I never published it.

At the time, I was one week away from another major surgery: a partial hysterectomy, pelvic floor reconstruction, and bladder and urethral suspension. Birthdays have a way of inviting reflection, and after several years of illness, surgeries, changing abilities, and an increasingly complicated relationship with my own body, I found myself thinking less about getting older and more about the people who had shaped the first forty-three years of my life.

I started writing about my students. My children. My family. The nurses who cared for me during years of severe depression. Patients I cared for after becoming a nurse myself. The friends who stayed. The people who drove me when I could not drive, brought meals when I could not cook, helped with my children, sat beside me in hospitals, sent texts or phone calls to check in, or simply continued showing up when there was nothing anyone could do to make the situation better.

A week later, I went into surgery expecting to come home that evening and begin recovering. I figured I would be healthy soon enough to finish the essay I had started about interdependence.

Instead, a bladder perforation led to emergency care, hospitalization, more procedures, an infection, another hospitalization, and more uncertainty. I was finally cleared to stop antibiotics five weeks after the initial surgery.

Somehow, the time both dragged and disappeared.

What I thought would be a relatively straightforward recovery became another stretch of life shaped less by my plans than by what my body could actually tolerate.

Once again, other people stepped in. And they continue to step in.

There is something humbling about repeatedly discovering the limits of your own self-sufficiency.

I don’t mean humiliating. I think I spent enough years confusing those two words.

In the truest sense, I mean humbling. Illness has repeatedly confronted me with the reality that determination cannot make a damaged body behave differently, that needing another person does not erase what I can still offer, and that almost everything I once considered evidence of my independence was supported by other people in ways I rarely stopped to notice.

This week offered a much smaller example.

After a busy end of the week last week, I have spent several days in a significant flare. The profound fatigue has been difficult to describe. It is not ordinary tiredness or something I can negotiate with by trying harder. There were a couple of mornings this week that dysautonomia, fatigue, and pain made getting out of bed difficult enough that driving was simply not going to happen.

Unfortunately, I had a Botox appointment for migraines scheduled 45 minutes away earlier this week but had to cancel at the last minute.

The week before, I had driven to an appointment successfully. I went to bed expecting that I would drive myself again. Instead, I woke up and realized I could not safely get myself there.

So I canceled. The irony of being too sick to get to the doctor.

For years, I have searched for transportation assistance and contacted services hoping to find a reliable option for the times when driving is not possible. Family and friends have stepped in countless times, and I remain deeply grateful for every ride. The difficulty is that chronic illness does not always announce itself far enough in advance to make arrangements.

Sometimes I can drive. Sometimes I need someone beside me. Sometimes I can sit upright. Sometimes I have to lie down in the back seat. Sometimes I need medication just to manage the nausea of getting there.

Sometimes I do not know which version of the day I am getting until I open my eyes that morning, and even then, morning is not necessarily an indication of what the rest of the day will hold. I may spend most of the morning unable to tolerate being upright and still find a couple of better hours that evening.

This is a dynamic disability.

My capacity changes, sometimes from one day to the next and sometimes within the same day. Being able to do something once does not mean I can reliably repeat it. Driving to an appointment last week did not mean I could drive to one yesterday. Being upright for a few hours in the evening does not erase the hours I spent lying down before them.

That variability can be difficult for other people to understand, but it has also taken me years to understand it within myself, and I still have a lot to learn. I spent so much of my life measuring capability as though it were fixed: I can do this; therefore I should be able to do this, etc.

A dynamic disability does not work that way, and perhaps neither does independence.

I used to experience those fluctuations almost entirely as losses.

Loss of independence.
Loss of productivity.
Loss of the person I believed I was supposed to be.

I am beginning to wonder whether illness has also been exposing something that was true long before I became sick. Perhaps I was never as independent as I thought I was…

…None of us truly are.

Lately, I have been exploring that idea through art.

One branch can be beautiful on its own…even if a tree is struggling…like in this painting below.

Maybe it all belongs to something larger.

Perhaps that is why, six weeks after beginning this essay, it is becoming clearer to me about what I was trying to reflect upon in my writing.

Not the loss of independence, per se, but more the illusion of self-sufficiency.

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My students taught me that people cannot be measured by a single standard.

For ten years I taught music in an inner-city Catholic school.

It was beautiful work. It was exhausting work. And, to be honest, it wasn’t work that supported a family particularly well. Yet those children quietly dismantled my assumptions about success long before I realized it.

Some struggled to read but could hear a harmony instantly. Some carried responsibilities at home that no child should have to carry. Some possessed a depth of compassion that no standardized test could ever measure. Others excelled academically while quietly surviving tremendous hardship.

Every student reminded me that human beings flourish differently. Success was never one-dimensional.

One of the greatest gifts of those years has come long after I left the classroom. Every so often, a former student reaches out with a message, a letter, or an update about their life. Those notes almost always bring me to tears. They remind me that, despite my imperfections, I truly tried to see each student as an individual with unique gifts worth nurturing.

One thing that made our program unusual was that every fifth through eighth grader took both band and choir, whether they wanted to or not. Some resisted at first. Some discovered they loved music. By the time we reached seventh- and eighth-grade competitions in both band and choir, which our students consistently did very well in, many had become lifelong musicians.

But even more meaningful than the awards is watching who they have become. A decade later, many of them are serving their communities, starting families, leading, creating, teaching, and quietly changing the world in ways that matter. Every message reminds me that education was never just about music. It was always about helping young people discover that they had something beautiful to offer the world.

My family taught me to question independence.

Years later, during a conversation about parenting, someone I loved remarked that the ultimate goal of raising children was independence. Without thinking, my mind went immediately to my niece, who was six at the time. She lives with a rare genetic condition and will require lifelong assistance and caretakers.

“If independence is the goal,” I wondered, “what does that mean for her?”

That question stayed with me.

At the same time, I was raising three very different children of my own. One family. Three unique personalities. Different strengths. Different struggles. Different ways of seeing and experiencing the world. Two of my children are neurodivergent, and all three have taught me that love cannot be measured by sameness or compared against someone else’s timeline.

How could I possibly believe there was one finish line that defined a successful life?

My children have also watched me endure years of pain, dismissal, uncertainty, and fear. Like many parents living with chronic illness, I have grieved the moments my health prevented me from being the mother I longed to be. But I could not help but marvel at what happened when I could not be there in all the ways I wanted to be.

Other people stepped in.

Family members. Friends. Teachers. Neighbors. Coaches.

A support system grew around my children and helped keep our family afloat during seasons when life became too much for one family to carry alone. No one replaced me, nor did anyone need to. Instead, more people became part of their lives, each offering something different when our family needed it.

For a long time, I saw those moments mostly through the lens of what illness had taken from me, but now I am beginning to see something else there, too. My children were surrounded by people who cared enough to show up for them.

Maybe that was never evidence of what I had failed to provide; maybe it was evidence of what community is for.

Depression taught me that achievement cannot save you.

After the birth of my youngest child, depression gradually became a daily fight for survival. Medication after medication failed, and eventually the diagnosis became treatment-resistant depression. For someone whose identity had always been built around achievement, education, teaching, and helping others, it felt as though the ground beneath me had disappeared.

Survival became my full-time job.

After requiring inpatient treatment, I ultimately left the teaching career I had loved for ten years. Beginning in 2017, I moved through numerous inpatient and outpatient psychiatric programs and, between 2017 and May 2019, underwent approximately ninety electroconvulsive therapy (ECT) treatments.

ECT would sometimes help for a while. Then the depression would return.

Some psychiatric nurses treated me with extraordinary compassion. Others did not. I still remember one nurse telling me how selfish I was for having suicidal thoughts when I had three children waiting for me at home. When my psychiatrist learned what had been said, he addressed it directly with the nurse. At a time when I had very little ability to advocate for myself, someone else stepped forward and protected my dignity.

I have never forgotten that.

Eventually, somewhat ironically, the treatment that helped me begin climbing out of the deepest depression was not another round of ECT. An off-label stimulant lifted the depression enough for hope to begin returning and for me to start rebuilding a life. DBT also gave me ways of understanding my own mind that traditional CBT never had. Slowly, with effective treatment, time, support, and a great deal of work, hope returned.

But rebuilding was more complicated than simply getting better.

ECT significantly affected both my short-term and long-term memory. Large portions of those years remain difficult or impossible for me to recall, along with pieces of my earlier life. By then, I had also lost the career around which I had built so much of my identity.

For a person who spent much of her life trusting her mind, her education, her memory, and her ability to accomplish things, that has required an entirely different understanding of worth that I still struggle to identify with quite often, if I were to be completely honest.

My children remained an enormous source of love and meaning throughout those years of treatment resistant depression. Their faces were among the ones I held onto when holding onto anything felt nearly impossible.

But I understand something now that I could not understand then: I did not need to earn the right to stay alive by being a good enough mother, teacher, nurse, wife, student, or anything else. Instead, my life had value even when survival was the only thing I could accomplish.

Nursing taught me to observe the whole person.

After everything I had experienced as a psychiatric patient, I wanted to become one of the good nurses. The kind a patient remembers because they felt seen. The kind they remember because, during a frightening or vulnerable moment, someone made them feel safe and respected.

Long before nursing school, I thought I would eventually work in psychiatry. Whenever we were asked which specialty interested us, psychiatric nursing was always my answer. I knew firsthand how profoundly one compassionate nurse could change someone’s darkest day.

I also knew how deeply careless words could wound.

I was accepted into a community college nursing program in March 2020, just as the world was shutting down.

There was something surreal about beginning nursing school during the first year of COVID. Every day brought new images of overwhelmed hospitals, exhausted healthcare workers, shortages of protective equipment, and a virus we still understood very little about. This was the era of healthcare workers stripping off their scrubs and showering before hugging their children because no one quite knew what they might be carrying home.

Suddenly, becoming a nurse did not feel like an abstract career decision. We were watching, in real time, what the profession could ask of a person.

Our cohort was given the opportunity to postpone enrollment for a semester without losing our places in the program. Of the 64 students originally scheduled to begin, 45 continued. Nearly a third chose to wait amid the uncertainty.

I understood why, but I continued.

Near the end of the program, during my psychiatric clinical rotation, I felt comfortable enough with my clinical instructor to tell her about my own psychiatric history. I asked whether she thought sharing some of my experience might help the other students better understand mental illness and treatment.

Honestly, I was terrified.

Very few people knew the extent of what I had lived through. Only a couple of my closest friends even knew I had been diagnosed with depression and anxiety disorders. Saying aloud that I had been hospitalized for severe treatment-resistant depression, that I had been under the care of the same psychiatrist for years, and that I had undergone approximately ninety ECT treatments felt extraordinarily vulnerable.

I also knew that disclosure could change the way people saw me. I had worked incredibly hard for my grades and regularly performed near the top of my classes. I worried that revealing this part of my life might somehow overshadow everything they already knew about me.

Nursing school has a way of forging relationships through long clinical days, exhaustion, grueling exams, bodily fluids, ridiculous amounts of information, and the shared experience of trying to become competent enough to care for another human being. By that point, these classmates had become people I trusted.

On the final day of our psychiatric clinical rotation, I looked at the six other nursing students in my group and told them my story.

I wanted them to remember that every person admitted to a psychiatric unit is, first and foremost, a human being. Nursing would teach us to recognize diagnoses, symptoms, behaviors, risks, and patterns, and that knowledge mattered, but none of those observations could tell us everything about the human being in front of us.

A psychiatric patient could be profoundly ill and still be intelligent. They could be suicidal and deeply love their children. They could need help and still have spent much of their lives helping others. They could be both patient and professional, vulnerable and capable, struggling and accomplished.

Mental illness is not a character flaw. Intelligence does not protect someone from depression. Education does not make someone immune to psychiatric illness nor does it erase trauma. Achievement cannot guarantee that a brain will remain healthy. No résumé, profession, family, degree, or amount of determination makes any of us invulnerable to suffering. Patients should be treated with compassion, including the ones behind locked doors, because none of us are as far removed from suffering as we sometimes like to believe.

I graduated as an RN in June 2022. After everything it had taken to get there, I thought I was beginning another chapter of my life.

I had no idea how brief that chapter would be.

My body taught me that perseverance has limits.

After graduating, I worked at the VA until a serious car accident in early 2023 changed the trajectory of my health.

Like so many people after an injury, I assumed I would heal. The initial diagnosis was severe whiplash, with an expected recovery of three to six months. Yet within weeks of returning to work Almost immediately, I developed bizarre neurological symptoms and severe, unexplained back pain and within weeks of returning to work the physical pain and neurological symptoms quickly became too much, and I resigned from the full-time nursing job I had only recently begun.

It was devastating. I had worked so hard to become a nurse, started a new career, and suddenly I could not even manage a full-time job. Depression spiraled, and suicidal thoughts returned, but I had survived extraordinarily difficult mental health seasons before, and I was not going to give up so easily.

So I did what I had spent most of my life doing when something was difficult.

I worked harder.

A neurologist diagnosed me with a traumatic brain injury. Testing began, specialist appointments multiplied, and I kept searching for answers. I tried medications. I went to physical therapy. I tried injections. I believed that if I remained determined enough, eventually I would find my way back to the life I had just begun building. Back to walking eight or ten miles without breaking a sweat. Back to playing infield in softball games and downhill skiing. Back to a body I still assumed was temporarily injured rather than fundamentally changed.

Six months came and went.

Then a year.

My body did not cooperate with the timeline.

I still was not ready to let go of nursing completely. In early 2024, I took a part-time home nursing position, trying to hold onto the profession I had worked so hard to enter while continuing to search for answers. Eventually, my neurological symptoms progressed to the point of right foot drop, and even part-time nursing became impossible.

For a long time, I believed perseverance meant continuing despite the pain. If I could physically accomplish something, surely I should. If I managed it yesterday, surely I should manage it today. If determination had carried me through four college degrees, severe depression, nursing school during a pandemic, and countless other difficult seasons, surely determination could carry me through this too.

Unfortunately, biology does not negotiate with a résumé.

What took much longer to understand was why determination was no longer enough. For years, I was receiving conflicting messages from my body, from the people around me, and from the medical system itself. My symptoms were severe, yet I was repeatedly reassured that nothing serious was wrong. I was encouraged to keep moving, keep trying, keep functioning, and trust that eventually I would get better.

So I kept pushing, sometimes because that was what I had always done, sometimes because I believed the medical reassurance I was given, and sometimes because life as a mom did not leave much room to simply stop.

Eventually, further testing and surgeries revealed physical explanations for symptoms I had spent years trying to overcome, including extensive symptomatic Tarlov cyst disease throughout my spine and a spinal cerebrospinal fluid (CSF) leak.

Illness taught me how easily suffering is misunderstood.

As my neurological conditions progressed, remaining upright became increasingly difficult. The longer I stayed on my feet, the more likely I was to experience severe head pain, nausea and vomiting, cognitive changes, and other neurological symptoms.

People sometimes assumed I stayed in bed because I was depressed. Others seemed to believe I simply was not determined enough, which would have been an unusual conclusion for anyone who knew me well.

The complicated truth was that I was depressed.

But which came first mattered.

Before the accident, after years under the care of the same psychiatrist and psychologist, my depression had reached what was considered partial remission. Within days of the accident and the onset of severe pain, suicidal thoughts returned, something I had not experienced with that intensity in years. As the pain continued without explanation, my mental health deteriorated with it.

None of that meant the physical symptoms were caused by depression.

Eventually, testing revealed neurological disease that helped explain why my body behaved the way it did, including a spinal CSF leak and extensive symptomatic Tarlov cyst disease. I could not positive-think my way into tolerating an upright position my body could not tolerate. I could not outwork damaged nerve roots or a CSF leak.

There is a profound difference between unwillingness and inability.

Perhaps that difference is particularly difficult to recognize because so many of us have absorbed some version of the same story:

No pain, no gain.

There’s no crying in baseball.

Everything happens for a reason.

God never gives you more than you can handle.

Stay positive.

Push through.

You’re stronger than you think.

Some of those words can be encouraging in the right circumstances. Perseverance has carried me through some extraordinarily difficult things. Faith and optimism can be meaningful sources of strength for many people.

But there is danger in turning perseverance into a moral expectation.

If effort is assumed to determine outcomes, what does that imply about the person who does not get better? Somewhere beneath all of the encouragement can hide a much harsher message: perhaps the person who remains sick simply has not fought hard enough.

My own experience taught me otherwise.

It also forced me to confront something I had never fully understood before: how powerful bias can become when a person’s physical illness is repeatedly interpreted through the lens of mental illness.

My psychiatric history was already documented. So were years of ECT. Those experiences were real and important parts of my medical history, but they also created a lens through which new symptoms could be interpreted. I sometimes found myself fighting not only to explain what my body was doing, but to convince people that my own observations of it were trustworthy.

Eventually, something even more unsettling happened.

I began questioning myself.

Was the pain really as severe as it felt? Was I somehow causing this? Was I failing to cope with sensations that other people would simply tolerate? Could everyone else see something about me that I could not?

Those questions followed me home from appointments.

For a long time, they became part of the illness itself.

Only now does some of that self-doubt feel as though it is beginning to lift. I wish I could say the same for all of the brain fog.

Further testing and surgery eventually provided physical explanations for symptoms I had spent years trying desperately to describe. Those answers brought validation, but they could not return the years spent doubting my own perceptions, repair every relationship strained beneath the weight of uncertainty, or immediately restore the trust in myself that had slowly eroded. Plus, the diagnosis did not provide a cure for the disease itself.

My friends and family taught me what community actually looks like.

Not everyone understood.

Some people distanced themselves. Some offered easy answers to complicated suffering. Others unintentionally revealed how uncomfortable vulnerability can make us.

But others...

Others quietly carried pieces of my life.

Meals. Phone calls. Texts. Rides.

My husband assumed responsibilities neither of us ever imagined. For much of this journey, I couldn’t drive, sometimes not even to my own medical appointments. He became the parent responsible for most of the driving, many of the meals, and countless ordinary tasks that keep a family moving forward. Like many marriages touched by chronic illness, ours has also carried seasons of grief, misunderstanding, and sheer exhaustion. Still, I remain grateful for the many ways he continues showing up when life looks nothing like either of us expected.

My children quietly stepped into responsibilities they were never supposed to have. They helped me after falls. They rotated ice packs when my sacral pain became unbearable. They learned to recognize the days when words came slowly because my neurological symptoms had worsened.

They developed a depth of empathy, patience, and awareness that no parent hopes their children will need to learn so young. Through surgeries, setbacks, and uncertain diagnoses, they became some of the greatest sources of hope in my life.

Friends and family filled in the spaces illness created. They sat beside me in waiting rooms, checked in after procedures, brought meals, offered rides, helped with the kids, and listened without always trying to fix what could not be fixed.

The professionals who had walked with me for years became part of that support as well. Because I had established relationships with my therapist and psychiatrist before becoming so physically limited, telehealth allowed those relationships to continue during seasons when traveling was extraordinarily difficult. It reminded me that accessibility is not a luxury. For many people living with disability or chronic illness, it is the difference between receiving care and going without it.

Looking back, I don’t remember only the surgeries, scans, or diagnoses…

I often remember the people who were there.

I remember friends and family checking in without expecting me to pretend I was okay. I remember a sister reminding me that suffering is never a competition. I remember a husband keeping track of bills and schedules when so much of our life had become unpredictable. I remember the people who quietly listened during some of the darkest moments of my life. I remember the physicians who listened to my concerns, offered treatment options, and continued advocating for me within a system that too often struggled to meet my needs.

Very few of those moments would look extraordinary from the outside, but together, they meant making it through another day.

Maybe that is what community actually looks like. It is not a ledger of who gave what, who needed more, or whether everyone contributed equally. There are seasons when one person carries more because another simply cannot. The roles change. Needs change. Capacity changes. We give when we can, receive when we need to, and sometimes simply remain beside one another when there is nothing left to offer except our presence.

There does not always have to be an exchange.

Perhaps some of the deepest forms of compassion begin when we stop measuring another person’s worth by what they can accomplish, contribute, or eventually give us in return.

Sometimes love is simply the quiet decision to keep showing up.

My daughter asked the question I didn’t know I needed.

Recently, before my latest surgery, I had one of those days when I did far too many chores around the house. I cleaned the bathroom, vacuumed several rooms, emptied garbage throughout the house, cleaned our chinchilla’s cage, watered the plants, made the bed, and cared for the dogs.

My daughter watched me for a while before finally asking,

“Mom...what are you trying to prove? You are in so much pain; your body needs to rest.”

I haven’t stopped thinking about that question because she wasn’t really asking about the bathroom or the vacuuming.

She was asking about a lifetime spent believing my worth needed to be demonstrated.

Chronic illness can make you feel like a really shitty parent. There are days when I am lying in bed staring at the ceiling while life continues elsewhere in the house, and no amount of intellectual understanding about disability completely silences the voice that tells me I should be doing more. So when my body gives me a little room, sometimes I still find myself trying to make up for everything I could not do before.

Perhaps that is what so many of us are doing.

Trying to prove we deserve to belong. Trying to prove we contribute enough. Trying to prove we have earned rest. Trying to prove we are not a burden.

And how much evidence is enough?

Was a decade of being a successful teacher enough? Four college degrees? Becoming a nurse? Earning Salutatorian? Raising children? Saving a life? Keeping a house clean while my body was screaming at me to stop? Volunteering time for a church or school event? Simply being human?

At what point have I contributed enough to be allowed to simply exist without producing evidence of my usefulness?

Maybe that is what my daughter could see more clearly than I could. She wasn’t asking me to prove less. Instead, she was questioning why I thought I needed to prove anything at all.

Perhaps none of us were meant to stand alone.

Everything survives through relationship.

Forests exchange resources through roots and fungal networks. Cells communicate. Nervous systems depend upon countless signals moving between one part of the body and another. Families become communities, knowledge passes between generations, and almost everything we accomplish rests upon work someone else did before us.

Why did we decide human beings were supposed to be different?

Maybe that is what I have been trying to understand through this artwork. Throughout this essay, I have shown you only pieces of it. Up close, each section has its own lines, patterns, boundaries, and identity. You can study one small area and almost forget that anything exists beyond it.

Step back, and the perspective changes.

The individual pieces do not disappear. They remain distinct, but now we can see that they exist in relationship to everything surrounding them.

An Ecology of Us - MJ Felt
Work in progress

You have seen pieces of this artwork throughout this essay.

The view changes when we step back far enough to see what connects us.

As I am writing about my experiences with illness, disability, and healthcare, I find myself wanting to move beyond documenting my own experiences and begin exploring some ideas surrounding advocacy.

I have plenty of them, but I want to approach them slowly.

I am still figuring out what it means to find my place in a world that has become physically much smaller than the one I once knew. Healing remains complicated. Some days there is writing. Some days there is art. Some days there are conversations with family or friends, or messages exchanged with people across the country and around the world who happen to share one of the rare diseases that has changed my life. And some days, there simply is not much capacity for anything at all.

Yet my life continues to expand through relationships, creativity, curiosity, and the people I remain connected to, including many I would never have known had illness not brought our lives together. I want to protect those relationships. I want to keep making things when my body allows. I want to keep noticing beauty. And when I have something worth saying, I want to continue using my experiences to bring greater awareness to lives and illnesses that are too easily misunderstood.

That requires vulnerability, and this essay has asked for quite a lot of mine.

As I continue writing about healthcare and advocacy, I have plenty of ideas I want to explore slowly, with the care and thought they deserve. I suspect my thinking will continue to change as I listen, read, create, heal, and encounter perspectives beyond my own. I don’t need to know exactly where all of it is going yet.

I only know what I want to remain at the center of it.

People and dignity.

Including, perhaps finally, my own.

In a song of hope, MJ

Most of you know the broad outline by now. On July 15th, I underwent what I hoped would be one of those surgeries that quietly improves the background of your life. After years of neurological symptoms, pelvic organ prolapse, bladder dysfunction, bowel dysfunction, chronic pain, and slowly adjusting my expectations of what “normal” might look like, I wasn’t expecting perfection. I was simply hoping to reclaim a small piece of everyday life.

The severe rectocele, cystocele, bladder prolapse, extremely painful menstrual cycles, and years of sacral nerve root injuries had taken a tremendous toll on bladder, bowel, and sexual function. There is something profoundly isolating about having parts of your body malfunction that most people your age neither experience nor discuss. We are generally comfortable talking about knees, shoulders, and high blood pressure. Pelvic organs are another story entirely.

And, for the record, nobody tells you there is a significant difference between bladder protection pads and sanitary pads. Let me assure you...there is. Sometimes chronic illness introduces you to entire worlds you never wanted to know existed.

This is a picture of me after the surgery on July 16, 2026. As you can see, I bit my lip pretty hard during surgery, so my lip was pretty swollen. I also discovered that the suprapubic catheter that was placed for temporary use had perforated through the bladder wall.

I wasn't looking for perfection. I was hoping to reclaim a little dignity in some of the most private parts of being human—the ability to empty my bladder, have a bowel movement without planning my day around it, and live without every decision being filtered through the question of whether my body would cooperate.

Instead, I came home with an unrecognized bladder perforation.

Less than two days later, I was back in the emergency department. A CT scan revealed urine leaking into my pelvis, and what I imagined would be a brief evaluation slowly unfolded into nearly four days on an emergency room stretcher before an inpatient bed finally became available. I eventually returned home, believing perhaps the worst was behind me, only to be readmitted days later with a septic infection, another CT scan, another IV, more rounds of antibiotics, and a large pelvic fluid collection that we continue to watch carefully, hoping my body will absorb what remains without requiring another procedure.

I started referring to it as my “hysterectomy from hell.”

Some of the nurses laughed. Others raised their eyebrows before admitting that perhaps the description wasn’t entirely unfair. More surprising, though, was how often those words became an invitation rather than a punchline. Nearly everyone had a story. If it wasn’t their own, it belonged to a spouse, a sister, a mother, a neighbor. Complicated surgeries have a way of quietly connecting strangers, and it seemed like everyone could relate to it.

For years, I have lived with a rare spinal disease and later a spinal cerebrospinal fluid leak, conditions that often left me explaining anatomy most people had never heard of and experiences very few could relate to. This complication, although rare, belonged to a category people immediately understood.

Something went wrong in surgery. An unexpected complication. People have heard the stories. People have witnessed the aftermath of surgical complications. Others knew what that felt like.

What has surprised me, however, is that the surgery itself has occupied surprisingly little space in my thoughts these past few weeks. The timeline is dramatic enough on its own, but I don’t find myself replaying CT scans or catheter exchanges nearly as often as I find myself wondering about something much quieter.

I keep wondering what prolonged medical trauma does to a person’s inner world.

What happens when your nervous system spends years anticipating the next complication? When the line between vigilance and exhaustion becomes increasingly difficult to distinguish? When your body finally begins to heal, but your mind hasn’t yet received the message that the emergency has passed?

There have been moments over the last few weeks when I have caught myself feeling strangely detached, almost as though I were observing my own life from somewhere just outside of it. The world still looks the same, but it feels slightly different, as though my brain has stepped back a few feet in an effort to soften the intensity of what my body has been experiencing. There were moments in the emergency department when the pain became so overwhelming that I almost watched myself from above, sobbing, asking for relief from bladder spasms while the constant beeping of IV pumps, monitors, hallway conversations, overhead announcements, and fluorescent lights seemed to merge into one endless stream of noise. Medication was often delayed because the nurses were caring for far too many patients, and although I understood why, understanding did not make the pain any easier to bear.

Then there were the strange flashes of memory that arrived without invitation.

Bits of nursing school. Former patients with sepsis. Conversations I had once had as the nurse standing beside the bed instead of the patient lying in it.

It is a peculiar experience to know enough medicine to understand what might happen while simultaneously having absolutely no control over whether it will.

“God is the Ultimate Puppeteer” - pencil sketch MJ Felt (inspired by a Pinterest board)

Through all of this, while the surgeon was teaching me how to catheterize myself, I finally asked the surgeon the question that had been quietly sitting in the back of my mind over a week.

“So….What happened during surgery?”

This appointment took place nine days after surgery, before I had developed the infection that would ultimately land me back in the hospital for another four days. At that point, I was simply trying to learn how to empty my own bladder while hoping my body would continue to heal.

My aunt stood beside me while another clinician remained in the room. The surgeon didn’t hesitate.

“It was my fault, and I am so sorry.”

He went on to explain what he had experienced after seeing the CT scan, that this complication had not happened in more than four decades of operating, and how he had already been collaborating with colleagues to determine the best way to care for me moving forward.

I have thought about that conversation many times since.

Not because those words erased what had happened. They didn’t.

Not because they made learning to catheterize myself any less surreal. They couldn’t.

What has stayed with me is something much quieter.

For just a few moments, it no longer felt like there was a surgeon on one side of the room and a patient on the other. It felt like two human beings standing in the same difficult moment, each wishing with everything they had that the outcome had been different.

Medicine asks physicians to carry enormous responsibility, and patients to place extraordinary trust in people they have often only known for a matter of hours. Sometimes those relationships are marked by remarkable healing. Sometimes they are marked by profound disappointment. In my case, it was marked by something best described as a shared humanity in the middle of an outcome that neither person wanted.

Human beings inhabit remarkably resilient bodies…and unbelievably fragile ones.

digital art - MJ Felt

For much of the past three and a half years, I have lived in the uncomfortable space where patients often find themselves searching for someone to acknowledge what they already know in their own bodies. I have experienced dismissal, uncertainty, disagreement, and enough medical gaslighting that when I realized I hadn’t urinated for nearly thirty hours after surgery, a part of me still believed I should simply wait it out.

Deep down, I knew something was wrong the day of the surgery, but I did not say anything.

My husband took the dog and slept in another room that night so I could attempt to get some uninterrupted sleep. The kids were home. Life, somehow, continued around me while I kept repeating the same thought over and over: This must just be normal surgical pain.

Looking back, there is something almost heartbreaking about that. I realized that I have slowly learned to negotiate with my instincts. Instead of asking, What if something is wrong? I found myself asking, Am I overreacting? Am I expecting too much? Should I just give it more time?

By the time I finally returned to the emergency department, nearly thirty-six hours had passed. I felt terrible, and the pain and pressure was increasing by the hour. However, repeated experiences have quietly taught me to question my own instincts before questioning the situation itself.

One of the things that has surprised me most over these last several weeks is that I am not consumed by anger.

That doesn’t mean I wasn’t frightened. I was.

There was a moment during the ambulance ride back to the hospital when I looked out the window and genuinely wondered if I had already seen my house for the last time. I remember quietly shrugging my shoulders and thinking, Well...I tried my best.

I still don’t entirely understand that moment.

Perhaps it was exhaustion.

Perhaps it was surrender.

Perhaps it was simply what happens when a person has lived through enough unexpected medical crises that the illusion of control begins to loosen its grip.

I don’t know.

Instead, I find myself paying attention to my surroundings, and it honestly is so overwhelming.

This was another reminder of the way pain narrows the world until an hour feels impossibly long.

It was a reminder of the ticking of a hospital clock while another summer afternoon quietly disappears.

To the grief of realizing that my children are preparing to return to school and so much of their summer has been spent with a mother who was simply trying to survive another medical complication.

To the strange comfort of sitting quietly, holding a rock in one hand and a paintbrush in the other, adding another thin coat of paint after another night of restless sleep. There is something almost meditative about watching the paint slowly build, layer by layer, while my own body seems to be healing in much the same way. It is progress so small that you don’t see it until looking back.

Recovery has a rhythm of its own. I have found it to be pretty unpredictable, and one that I could never imagine.

Once you’re home from the hospital, people naturally assume healing moves forward in a steady, predictable way, as though every day simply carries you a little farther from the crisis. Mine hasn’t felt that way at all. There have been measurable milestones that I celebrate because, quite honestly, a few weeks ago I wasn’t sure they would come: the Foley catheter eventually coming out, blood work finally beginning to normalize, another CT scan showing improvement, my bladder slowly proving that it could still do what it was designed to do, the infection resolving, and—forgive me if this is more information than you ever wanted—but even being able to have a bowel movement without manually evacuating my rectocele for the first time in years.

I have even noticed, just within the past couple of days, small signs that my bladder seems to be regaining a little more control.

I catch myself smiling. This is why I had the surgery.

It is easy to lose sight of that when a complication takes center stage.

While the perforation, sepsis, and emergency room were being focused on, underneath all of that, almost quietly, the surgery may actually be accomplishing exactly what I had hoped it would.

Life has a funny way of allowing two seemingly contradictory stories to unfold at the same time.

The complication was real. The healing is real too.

What I do know is that I no longer spend as much energy trying to decide which truth is the real one.

I am deeply grateful that my bladder healed without another surgery. I still grieve that it was perforated in the first place.

Medicine has traumatized me. Medicine has also introduced me to physicians whose honesty, humility, and persistence have changed the trajectory of my life.

My body has disappointed me in more ways than I ever imagined possible. It has also survived every single thing I once feared it might not.

Lately, I have even found myself questioning beliefs that I once held with complete certainty while simultaneously experiencing moments of awe that feel deeper than certainty ever did.

Perhaps that is one of the quieter lessons these past three and a half years have been trying to teach me. It seems that life is almost always larger than the categories we create to understand it, and that opposing truths often ask not to be solved, but to be held with enough humility that neither diminishes the other.

When I began to write this, I thought I was finally going to tell the story of my “hysterectomy from hell.”

The surgery will eventually become another chapter in a much longer medical history.

However, this experience brings up a lot of deep and overwhelming emotions. I cannot help but think about the ways prolonged suffering changes a person’s relationship with uncertainty, with time, with trust, with their own body, with relationships, and perhaps even with the questions they ask about life itself.

I only know that somewhere between catheters and CT scans, IV pumps and painted rocks, grief and gratitude, I have begun to notice that healing has been asking something of me beyond what surgery alone could repair. My bladder needed time. My nervous system needed to relearn that it was safe. My heart continues to wrestle with experiences that no laboratory value can quantify.

As both a nurse and a patient, I find myself increasingly convinced that this is why whole-person care matters so deeply. Bodies cannot be separated from minds, nor minds from the deepest parts of who we are. We don’t experience illness that way, so I don’t believe we can truly experience healing that way either.

There are so many parts of recovery that no scan will ever be able to measure.

What you may not have seen were the thousands of hours that happened in between.

The hours spent lying flat because being upright made symptoms worse.

The hours spent searching for answers.

The hours spent grieving a life I never expected to lose.

This letter is not about seeking sympathy.

It is about sharing the parts of the story that are harder to see from the outside.

A few years ago, I thought I understood what strength looked like.

I thought strength meant independence.

I thought strength meant pushing through.

I thought strength meant handling my problems privately, helping others whenever I could, and continuing forward no matter how difficult things became.

Life has complicated those beliefs.

Over the past several years, I have spent more time in doctors’ offices, imaging centers, procedure rooms, hospital beds, waiting rooms, and recovery periods than I ever imagined possible. My world became smaller.

One of the things I did not expect was how lonely chronic illness can feel.

Not because people do not care, but because no one else can live inside your body.

No one else can feel your pain.

No one else can attend every appointment, hear every conversation, or carry every fear about the future.

Some experiences belong only to the person living them.

I have spent years trying to find words for experiences that often felt impossible to explain.

Sometimes I withdrew.

Sometimes I became overwhelmed.

Sometimes I shared too much.

Sometimes I shared too little.

If you have watched from the outside and wondered what happened to me, the simplest answer is that I was trying to adapt to a life I never expected to live.

I was grieving.

I still am sometimes.

Not only for the things I lost, but for the person I thought I would become.

If you have only seen pieces of my story from the outside, there are parts you may not know.

There were days I spent almost entirely flat because being upright made the pain worse.

Days turned into weeks.

Weeks turned into months.

There were stretches where getting from the bed to the bathroom felt like an accomplishment.

There were nights when my family heard me vomiting from pain.

Nights when they heard me crying because I did not know how much longer I could endure what was happening inside my body.

There were emergency room visits where I desperately hoped someone would help and left feeling more hopeless than when I arrived.

There were appointments where I was told nothing was wrong.

Appointments where I was told anxiety explained symptoms that later proved to have physical causes.

Appointments where I left feeling smaller than when I entered.

There were moments when I questioned my own reality because so many other people seemed to question it first.

One of the most difficult lessons was discovering how easily uncertainty can become dismissal.

When answers are not immediately obvious, patients are often asked to carry not only the burden of their symptoms, but the burden of proving those symptoms are real.

That experience changes a person.

It changes how they view medicine, suffering, and the responsibility we all have to listen carefully when someone tells us they are hurting.

For those unfamiliar with the medical side of my story, a brief explanation may help.

In January of 2023, I was involved in an accident with a semi-truck. What initially appeared to be orthopedic injuries gradually evolved into a far more complex neurological condition.

Over time, I developed severe headaches, chronic pain, mobility difficulties, foot drop, bladder and bowel dysfunction, visual disturbances, and an increasing inability to tolerate being upright.

Eventually, specialists identified multiple disorders involving my cerebrospinal fluid, including symptomatic Tarlov cyst disease and a spinal cerebrospinal fluid venous fistula. Together, these conditions helped explain years of symptoms that had previously been misunderstood, minimized, or dismissed.

Surgical treatment and subsequent procedures restored important function and reduced some symptoms. I regained strength. My foot drop improved. Continuous sciatic pain that had dominated my life finally eased.

But treatment did not erase the years that came before it.

The reality is that my body was dealing with neurological and structural problems that could not be solved through determination alone.

No change in mindset was going to repair damaged nerve roots.

No amount of positive thinking was going to close a spinal CSF leak.

No amount of trying harder was going to reverse conditions that had not yet been identified.

There is another misconception I carried for years: that if I found the right doctor, the right medication, the right diagnosis, the right specialist, the right treatment, or simply tried harder, I would eventually return to who I was before.

I believed that for a long time.

The truth is that I could not have searched any harder than I did.

I spent years moving between specialists, emergency rooms, imaging centers, procedures, therapies, medications, consultations, and second opinions.

I studied.

I researched.

I advocated.

I documented symptoms.

I attended appointments when I barely had the strength to be upright.

I continued searching long after many people would have understandably given up.

The problem was never a lack of effort.

The problem was that my body was fighting battles that had not yet been named.

Three and a half years ago, I was injured.

Two years ago in August, I worked my last day as a registered nurse.

I could no longer safely lift patients.

I could no longer trust my body to do what my profession required.

That loss still hurts.

After years of severe pain, prolonged sleep disruption, neurological symptoms, surgeries, medications, and recovery periods, my brain no longer functions exactly the way it once did.

I need more breaks.

I process information differently.

My memory is less reliable.

There are moments when words disappear unexpectedly.

There are conversations where I lose my train of thought halfway through a sentence.

Some of these changes may improve with time.

Some may not.

The truth is that I do not fully know yet.

What I do know is that grief accompanies them.

There is grief in forgetting things that once came easily.

There is grief in recognizing that your mind requires more rest than it once did.

There is grief in realizing that cognitive endurance, like physical endurance, can be altered by illness.

The same is true of my body.

Walking has been affected.

Balance has been affected.

Strength has been affected.

Mobility has been affected.

There were periods when stairs felt impossible.

Periods when standing felt impossible.

Periods when sitting felt impossible.

Periods when simply existing inside my body felt overwhelming.

And through all of it, the pain remained relentless.

Not discomfort.

Not inconvenience.

Pain.

The kind of pain that reorganizes your life around survival.

The kind of pain that dictates where you sit, how long you stand, where you travel, how you sleep, what you cancel, and how much energy remains for everything else.

I think it is important to say this clearly:

I am not weak because I did not get better faster.

I am not weak because some symptoms remain.

I am not weak because healing has taken longer than anyone hoped.

And I am certainly not weak because there were years when no one could fully explain what was happening.

If effort alone could have solved this, it would have been solved years ago.

I tried. Relentlessly.

There is something else I want to say.

Thank you.

Thank you to the people who checked in.

Thank you to the people who drove me to appointments.

Thank you to the people who listened.

Thank you to the people who helped my family.

Thank you to the people who believed me.

Thank you to the people who did not always understand but chose compassion anyway.

You mattered more than you know.

Because illness has taught me something I wish I had understood sooner.

Most people are far more vulnerable than they realize.

Health can disappear.

Roles can change.

Independence can shrink.

Life can become unrecognizable much faster than we expect.

I used to think the goal of life was independence.

Now I wonder if the goal is belonging.

Not because independence is bad.

But because none of us are truly independent for very long.

Sooner or later, every human being encounters something they cannot carry alone.

Age.

Grief.

Loss.

Illness.

Disability.

Heartbreak.

Parenthood.

Fear.

Love itself.

We need one another.

Maybe we always did.

If effort alone could have solved this, it would have been solved years ago.

If being right alone could have solved this, it would have been solved years ago.

Sometimes bodies break.

Sometimes nervous systems misfire.

Sometimes people spend years searching for answers before someone finally listens.

And sometimes survival becomes the accomplishment.

There is one more thing I would ask.

Please continue to have patience with me.

Healing has not been a straight line, and it is not over yet.

In July, I will undergo pelvic floor reconstruction surgery in hopes of improving some of the bowel and bladder symptoms that have become part of daily life. Perhaps it will help significantly. Perhaps it will only help somewhat. Perhaps I will feel more comfortable being out in public again.

Maybe I will.

Maybe I won’t.

The truth is that I am still learning what my future looks like.

I am only 42 years old, and many of the things I now navigate are subjects people rarely talk about openly. Bladder dysfunction. Bowel dysfunction. Pelvic organ prolapse. Chronic pain. Neurological symptoms. The realities of a body that no longer behaves the way it once did.

These are the kinds of struggles that often stay hidden behind closed doors, wrapped in embarrassment, silence, and stigma.

Yet they are real.

They affect how long I can be away from home, where I sit, how I travel, what I can commit to, and sometimes whether I can participate at all.

So if I seem distant at times, if I leave early, cancel plans, need accommodations, or move through the world differently than I once did, please know that I am doing the best I can with the body I have today.

I have not stopped caring.

I have not stopped trying.

I am simply learning how to live in a body that has asked me to rewrite nearly everything I thought I knew about strength.

If you have helped me during these years, please know that I remember.

I remember the rides.

I remember the meals.

I remember the messages.

I remember the groceries, the encouragement, the prayers, the conversations, the patience, and the understanding.

When pain narrows your world, small acts of kindness become much larger than they appear from the outside.

You may not remember some of the things you did for me.

I do.

Love, MJ

Mixed Media - watercolor/pen MJ Felt

All of this is frustrating in ways I am still learning how to explain.

Even after COVID, when working from home became more normalized, I used to rant about how I never wanted to spend eight or nine hours a day sitting in front of a computer screen at a desk. No way.

And now, I am coming to terms with the fact that I may never safely lift a patient again. The only realistic way I may ever be able to work in this body is probably from home, on a computer.

There is a strange kind of grief that comes when your body finally experiences relief after years of being told the pain could not possibly be what you thought it was. I do not think people talk enough about that part.

Not just the grief of chronic illness itself, but the grief of realizing that somewhere along the way, you began questioning your own intelligence, your own instincts, and even your own reality because so many people in positions of authority told you that what you were experiencing did not make sense.

Learning to Doubt Yourself

I have always been considered “smart.” That sentence feels uncomfortable to write because women are taught very early that acknowledging intelligence can sound arrogant, especially if we are also emotional, chronically ill, mentally ill, or vulnerable in any visible way.

But the truth matters here.

I was salutatorian of my high school class twenty-five years ago. I graduated with nothing lower than a 3.8 GPA across four different degrees. I have two bachelor’s degrees, a master’s degree, and later returned to school to become a registered nurse. I taught music and English fora decade before entering healthcare. I know how to research. I know how to observe patterns. And I genuinely love helping others.

And still, somewhere over these last several years, I slowly began questioning whether I could trust my own mind.

Because when enough doctors repeatedly tell you that something is “impossible,” eventually part of you starts wondering if maybe you are the problem, even when your body is screaming otherwise.

I remember bringing up the possibility of cerebrospinal fluid leaks. I remember mentioning Tarlov cyst disease. I remember handing over research papers and explaining symptom patterns I had noticed after recently completing nursing school.

I also remember the looks.

The raised eyebrows.

The skepticism.

The subtle shift in tone.

The implication that researching your own condition somehow made you less credible instead of more informed.

There is a particular kind of humiliation that happens when your intelligence suddenly becomes suspicious the moment it intersects with your own suffering.

Part of what made the experience so psychologically devastating was the disconnect between how severe my pain actually was and how difficult it felt to communicate that pain in a way others understood. When pain dominates your entire existence, it becomes all you can think about. But then you walk into an appointment already exhausted, overwhelmed, emotional, sleep deprived, and cognitively depleted, and suddenly it feels like you have to explain everything perfectly in order to be believed.

That expectation feels profoundly unfair.

I have spent years trying to figure out how to advocate for myself inside systems that often reward confidence, quick verbal communication, and emotional composure. I have never naturally been someone who speaks easily in high-pressure situations. I have always expressed myself better through writing than speaking, and I still get nervous speaking in groups or to people in positions of authority.

One-on-one conversations can already feel difficult for my exhausted neurological system, let alone trying to summarize years of symptoms, pain patterns, imaging findings, and fear inside a rushed medical appointment while trying not to sound “dramatic” or be “too emotional.” (I have always cried easily.)

At times, I have even used ChatGPT to help organize my thoughts before appointments or to better understand concepts like medical gaslighting because I genuinely struggle to communicate clearly under stress. That feels vulnerable to admit, but I know I am not alone in it.

And like so many other patients eventually learn, I started bringing notes to appointments. I learned not to go alone if I could help it. I learned to ask for documentation when doctors declined testing, referrals, or treatments. But all of that sounds much easier in theory than it feels in the moment, especially when you are physically suffering and already aware of the mental health bias sitting inside your chart before you even walk into the room.

Some people instinctively know how to advocate for themselves verbally. I never really did. I have always been more of a quiet, background, spring-into-action type of person. The nice one. The accommodating one. The person who tried not to make things harder for anyone else. I think that made it even easier to slowly start doubting myself.

When the System Cannot Hold the Whole Story

During the years I was deteriorating, two of the three major hospital systems near me were hit by cyberattacks that disrupted records, communication, scheduling, and continuity of care. At different points, there were strikes, staffing shortages, hospital sales and restructuring, insurance barriers, and endless delays trying to move records between specialists who rarely seemed connected to one another.

Sometimes it felt like every part of the system was breaking at the exact moment I most needed stability.

Meanwhile, I was trying to coordinate neurological care, pain management, imaging, physical therapy, injections, referrals, and surgical opinions while barely functioning physically or cognitively.

Insurance often required months of conservative treatment before approving additional testing or procedures, even while my symptoms continued progressing. Physical therapy. Injections before further evaluation. Waiting periods that stretched into six months, eight months, sometimes over a year simply to see the next specialist.

Providers changed systems. Records disappeared into administrative voids. Offices could not fax records to one another after cyberattacks. Appointments were canceled and rescheduled repeatedly while my condition worsened.

And through all of this, I kept encountering the same underlying assumption: if symptoms were unusual, intermittent, poorly understood, or difficult to immediately visualize, then they were probably not significant. Only since February of this year, did I discover that I have been actively leaking CSF fluid, for years. Last June, I had surgery that helped to free my sacral nerve roots that were entrapped in a large 3.4 cm complex perineural cyst. Those nerves were entrapped (and therefore damaged) for 2 1/2 years before surgery was performed.

When you are the patient living inside a rare or complex condition, that framework can become devastating.

“Most people with this imaging are asymptomatic.”

“That finding is usually incidental.”

Over and over, I heard variations of the same message while my body continued collapsing.

So I kept carrying the Trapper Keeper. Because somewhere along the way, I realized that if I did not track everything myself, no one else was going to hold the full picture together.

I became the keeper of timelines, symptom logs, imaging reports, specialist notes, research articles, and questions. I have joked before about carrying around my purple Trapper Keeper full of papers, but the truth is I became that organized out of desperation.

At times, I probably searched too hard for answers.

I remember getting my MRIs and slowly taking radiology courses online because I knew something was wrong. I could see numerous cysts throughout my spine. But I doubted my own eyes because up until February, not a single scan had mentioned any other perineural cysts besides the sacral ones.

That is honestly one of the reasons I am still so upset.

I asked so many doctors whether there were additional cysts, and I repeatedly received responses ranging from “there is nothing to worry about” to simply “no.” I kept thinking I must be misunderstanding what I was seeing because they were the experts.

The latest myelography now shows numerous cysts on both sides at essentially every level of my spine.

There were appointments where I was told providers did not want to review the research articles I had printed or the symptom lists I had carefully typed out. Sometimes I could barely get someone to glance at videos of muscle spasms or neurological symptoms I was trying to document.

Adaptation for Survival

I did not start approaching my healthcare this way immediately after the accident. For the first year, I kept assuming things would eventually make sense to someone else. I was under the care of a neurologist, and kept reporting pain, symptoms, and neurological worsening to providers, but I was considered to be anxious, and “needed to get out and exercise more.” At this point, I realized I had to start documenting everything myself because no one else seemed to be connecting the dots.

The system failures were making it nearly impossible for anyone to see the full picture unless I carried hard copies of those records myself. I learned the hardest part of chronic illness is not always the pain; sometimes it is watching your reality become negotiable to other people.

I remember one doctor telling me to my face that scoliosis does not worsen until you are sixty. Mine had progressed ten degrees in eight years.

I had another doctor tell me I was not having severe back pain because I could squat. What he did not understand was that squatting was one of the only ways I could relieve the pressure from the cysts in my sacrum. I figured that out later, but instinctively, long before diagnosis, my body had already learned to squat and lie down because those were the only positions that gave me any relief.

I had a neurosurgeon ask whether I still had an open car insurance claim after I explained how dramatically my health changed following the accident involving the semi truck. I had already closed the claim because I had been told I only suffered severe whiplash and contusions and had no evidence of anything structurally wrong at the time.

A neurosurgeon later told my husband that Tarlov cyst neurosurgeons were scams motivated by money.

Meanwhile, many doctors and nurses focused heavily on my mental health while rarely addressing the severity of the nerve pain I was experiencing. Ironically, my psychiatrist and therapist were among the professionals who took my physical suffering most seriously and advocated for me consistently.

At that point, I still did not have confirmation that my spine had formed numerous aneurysm-like cysts within the dura. I did not yet have confirmation of the spinal CSF leak. I had not yet undergone neurosurgery for severe sacral pathology.

Emergency room physicians would tell my family there was little they could do, even during periods where I required multiple bags of IV fluids from repeated vomiting and dehydration. The beginning of 2025 was the sickest I have ever been in my life. Most ER visits resulted in little more than Tylenol and Zofran.

During my worst emergency room experience, a physician interrupted pain management while they were speaking with me and asked them to leave. He also withheld several of my normal medications, including psychiatric medications, and requested a psychological evaluation to determine whether I was mentally stable. She handed me her card afterward.

More recently, I discovered that Somatic Symptom Disorder had been added to my chart during that hospitalization. That label still affects my care today, and I have discovered how difficult it is to try to have records amended or changed in an EMR. I still shudder when I think about that hospital visit.

And somewhere along the way, I began questioning my own sanity.

That may be one of the most devastating aspects of medical gaslighting. Over time, it slowly erodes confidence in your own perception. You replay conversations in your head. You overexplain. You apologize for asking questions. You wonder whether your symptoms are somehow your fault.

You stop trusting your own body. And eventually, if it continues long enough, you stop trusting your own mind.

Some of the moments that caused me to doubt myself most deeply happened almost exactly a year ago from the dates we recently passed. I still experience flashbacks, anger, dread, and grief surrounding that period of my life.

There is something uniquely terrifying about experiencing neurological symptoms, cognitive changes, memory problems, sensory disturbances, and severe pain while simultaneously being told that what you are experiencing is anxiety, stress, exaggeration, or psychosomatic illness.

And I think that is part of why being “right” matters so deeply to people who have lived through medical gaslighting. It is not about ego. It is not about wanting to win. It is about survival.

Now that I have finally experienced more adequate pain management over the past several weeks, I can honestly say I did not fully understand how extreme the suffering had become until the pain finally eased slightly.

For the first time in years, I am sleeping more consistently. My heart rate warnings have decreased. I can sometimes remain upright for several hours a day instead of immediately collapsing back into bed. My outlook on the future has changed dramatically simply from having a small amount of relief.

And that realization has been emotionally overwhelming.

Why is treating severe pain so stigmatized?

Why are chronic pain patients often made to feel morally suspect for needing relief?

Because for the first time in a very long time, I am more present with my family. My brain is not constantly consumed by pain. I can think more clearly. I can tolerate moments of stillness without immediately spiraling into physical survival mode.

It feels like a heavy weight has finally lifted just enough for me to breathe again, knowing that I now have a pain management team willing to help me carry some of this.

Human beings need some ability to trust their own perception of reality in order to feel psychologically safe. When that trust is repeatedly undermined, especially during illness and severe pain, something destabilizing happens internally.

At the same time, there is an important difference between genuinely recognizing patterns in your own body and becoming consumed by fear or misinformation. Being right is grounded in observation, evidence, curiosity, and openness to new information. Gaslighting, on the other hand, dismisses lived experience without meaningful investigation.

Fear alone can sometimes convince people of things that are not accurate, but so can systems that refuse to listen. The difference often comes down to whether someone is approaching the situation with humility, collaboration, and a willingness to keep asking questions rather than forcing certainty too early.

One of the hardest parts is trying to determine whether you are truly being reassured or quietly dismissed while actively suffering. Especially as a woman. Especially as a mother with documented mental health diagnoses. Especially as a woman living in severe chronic pain.

I am now convinced that combination changes the way many people see you before you even speak.

I have lived through moments where asking questions or advocating for myself was interpreted not as collaboration, but as defiance. There were times I felt emotionally cornered. Times when physical boundaries were ignored. Times when my reactions to severe pain or fear were later used to discredit me rather than understood within context.

When you are a chronic pain patient, there are moments where your humanity starts disappearing in the eyes of the system. Add mental health diagnoses to the chart, and suddenly some providers begin treating your reality as negotiable. That truth is uncomfortable, but many patients know exactly what I mean.

One of the hardest truths I have had to face is realizing how quickly legitimate physical suffering can become psychologically reframed once certain diagnoses exist inside a medical chart.

It should not matter whether someone has depression, anxiety, PTSD, bipolar disorder, or trauma history. Pain is still pain. Neurological dysfunction is still neurological dysfunction.

A leaking spinal fluid system does not suddenly become imaginary because the patient also sees a psychiatrist.

But too often, healthcare systems still behave as though mental health diagnoses reduce credibility instead of simply adding complexity to care.

That mindset is dangerous because it creates blind spots, delays treatment, and destroys trust. And sometimes it pushes people into despair. I came dangerously close to losing hope more than once.

Reflecting back on it now, I realize it was not because I was weak. Relentless pain combined with relentless invalidation can psychologically break almost anyone.

I understand now why so many chronic pain patients feel trapped somewhere between survival and invisibility, especially those of us whose imaging findings sound “rare,” “controversial,” “poorly understood,” or “too complex.”

Relief, Anger, and the Return of Hope

And now here I am, just over two months after a successful embolization procedure for a CSF venous fistula.

Successful. That word still feels surreal.

For the first time in years, there has been a shift in the crushing neurological pressure that dominated my life. At the same time, I am now on a true pain management regimen for the first sustained period of my life outside of surgical recovery windows.

I have never had ongoing pain control before this, and my spine has been on fire for years. Only short bursts after procedures. Only survival mode. For years, I white-knuckled my way through days and nights while trying to remain functional enough to be a mother, wife, nurse, advocate, and human being.

And now I am experiencing something I almost forgot existed. Sleep. Not miracle-cure sleep, but enough relief that my nervous system can occasionally unclench.

Enough relief that I was able to attend a production of Annie this past week, where both of my daughters performed. That meant more to me than I can fully explain as a mother who has missed too many events in recent years because of illness and pain.

People living with severe pain understand exactly what moments like that mean. I sat upright. I stayed. I was present. I was not dissociated from agony. I was not counting the seconds until I could lie down again. I was not fighting waves of neurological pain every moment. I was simply there.

And afterward, I cried because I realized how many moments pain had stolen from me.

Then came the anger, which has always been the most unsettling part of grief for me.

Because alongside the gratitude is an unbearable question:

What if someone had helped sooner?

What if adequate pain management had not been treated like a moral failure?

What if more doctors understood that untreated pain changes cognition, sleep, mood, memory, heart function, emotional regulation, relationships, identity, and the basic ability to participate in life?

What if chronic pain patients were treated like human beings instead of liabilities?

And maybe even more painfully, I cannot help but wonder what might have been different if meaningful intervention had happened earlier, before years of deterioration occurred.

Would I have attended more concerts, performances, and family events?

Would I have spent less time confined to bed?

Would there have been less neurological damage? Less psychological trauma? Less loss? Less pain?

I think often about how many patients might have different outcomes if they received meaningful support within the first few months instead of afteryears of decline.

Early help matters. Early listening matters. Early pain control, neurological evaluation, mental health support, physical accommodations, and compassionate investigation matter.

Once a nervous system spends years trapped in survival mode, the damage becomes layered physically, emotionally, socially, and financially.

I think many people fundamentally misunderstand what severe chronic pain does to a nervous system over time. Eventually, the body stops living in isolated “pain episodes” and starts living in survival physiology. Sleep becomes fragmented. Anxiety increases because the brain can no longer reliably predict safety. Muscles remain guarded. Thoughts become foggy. Hope narrows.

It feels as though the body’s internal alarm system never fully shuts off. Psychologically, that changes a person. A great deal happens when you no longer feel safe or in control inside your own body. And yet many patients are still expected to perform calmness, politeness, gratitude, and emotional composure while their lives quietly collapse beneath them. Then, if they finally break emotionally, the emotional response itself becomes evidence against them.

Living With Uncertainty

My spine remains incredibly fragile.

I have numerous Tarlov cysts throughout my spine, and I now live with the reality that lifting, bending, twisting, or physical strain could create additional problems or future CSF leaks. Multiple doctors have essentially admitted that they do not fully know what to do long term with a spine this delicate.

At this point, I am still too fragile for physical therapy.

Nerves take years to heal, and I have not even reached the one-year anniversary of surgery for the symptomatic sacral Tarlov cysts.

I know I still have a long way to go before I fully understand what my new normal might look like. At the same time, now that I am two months out from successful CSF embolization, I am already noticing subtle improvements in headaches and in my ability to remain upright for longer periods of time before neurological symptoms take over. That gives me hope for a future, especially if research and medical advancements continue evolving around diseases like these.

Still, that uncertainty is difficult to live with.

There is no triumphant movie ending here.

Last June, when I traveled to Sacramento for surgery, I truly believed there might be, if I were to be completely honest.

Tarlov Cyst Resection and Recovery Collage — Sacramento, California - June 5, 2025

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There is no dramatic return to my old life, and for some reason, I still struggle to fully accept that. The sacral cysts were worse than imaging had shown, and in many ways the improvements after surgery were remarkable. Most importantly, I kept function in my leg.

Even after the sacral surgery, I continued experiencing severe headaches and neurological symptoms that I now understand were likely connected to the spinal CSF leak. I still hope some of those things continue improving with time after the embolization.

For now, though, my goals look much smaller than they once did.

Sometimes, it is simply hoping for a good enough day to watercolor birthday cards because I fell behind on family birthdays during illness.

Oddly enough, that small act has become one of the only creative things my body can still consistently tolerate. And when I am able to create something for the people I love, especially with my own hands, it heals something inside me that I still cannot fully explain.

I am still taking things one day at a time, and realistically, I probably always will in one form or another.

I have learned to appreciate the time alone, the reflection, and the stillness.

But it has also been lonely, frustrating, and deeply frightening.

Over the past several months, now that I finally understand more of the clinical picture surrounding what happened after the accident, I have had to rely heavily on the mental health tools and support systems I spent years building long before this illness escalated.

There were moments when I genuinely wondered whether I was going to psychologically survive everything my body was experiencing.

At times, I thought to myself that if I did not already have those mental health resources in place, I am not sure this story would have been written.

I have to spend large portions of my life resting. I calculate movements carefully. Every time I sneeze, cough, trip, or move the wrong way, there is still a small moment of fear. A quiet prayer that I have not disrupted something fragile again.

It is a strange thing to fully understand how delicate the spine can be and how profoundly neurological suffering can alter a human life.

One leak. One shift. One worsening flare.

And suddenly life can narrow down to a dark room, a bed, and the exhausting task of enduring another hour.

Severe pain changes people psychologically. So does isolation.

When you repeatedly feel unseen while your body is failing in ways few people around you fully understand, it can feel very lonely.

I still live with fear sometimes. I still grieve the body and future I once imagined.

I also have a disability hearing approaching, which feels emotionally surreal after spending so many years trying to prove that I was not lazy, dramatic, or mentally unstable. There is something profoundly disorienting about fighting desperately to remain functional while simultaneously needing to prove disability in order to survive financially.

Here is my Truth

I do not know exactly what my future looks like, but I do know that I want to keep telling the truth.

I know that working on the computer, researching medical topics, or even looking through my chart can still be triggering for my mental health, and I am learning to process those things on my own time. I often write about the past, but I do not want to live there. I reflect on it because I know what it feels like to exist in that in-between stage where your body is unraveling, your life is changing, and nobody can fully explain why.

I know what it feels like to lie down in dark rooms questioning your own sanity.

I know what it feels like to slowly lose trust in your own perception because the people around you keep telling you that what you are experiencing does not make sense.

And I know what it feels like when answers finally come, even if they are terrifying, because there is still relief in finally understanding what has been happening to your body.

That is why I wish more doctors understood how important answers are. Because rare disease patients often spend years in the cracks before anyone fully sees them. Years of suffering. Years of gaslighting. Years of adapting to losses that have not even been medically acknowledged yet.

By the time many patients finally receive diagnoses, entire lives have already been reshaped around survival and that is what I keep thinking about lately.

How many people fall through the cracks simply because their disease is complicated, rare, poorly understood, or difficult to prove quickly enough?

How many people begin doubting themselves before someone finally listens?

How many patients are quietly disappearing beneath untreated pain while still trying to remain polite enough to deserve care?

Falling Through the Cracks

For a long time, I thought I was falling apart, but now I am convinced I was falling through the cracks.

The cracks in the healthcare system. The cracks between specialties. The cracks between mental health and physical health. The cracks between “unlikely” and “impossible.” The cracks between what patients live and what charts are able to capture.

And maybe that is why this matters so much to me now.

Because once you have lived there, once you have spent years inside those cracks, you begin recognizing other people trapped there too. You can recognize it in the woman apologizing while describing unbearable pain. Or the patient carrying folders and timelines because no one else is connecting the dots. The person who sounds emotional because their nervous system has not felt safe in years. The rare disease patient who no longer knows whether to trust their body, their mind, or the professionals around them.

I see them clearer now. I can empathize even more now. And what I am finding is that there are so many of us being harmed or ignored by the healthcare system the way that it is currently set up. Awareness, empathy, curiosity, and the willingness to acknowledge that these cracks exist are the only ways anything begins to change.

And I want people to know this: being dismissed does not mean you are wrong. Sometimes, like in my case, the body knows long before the system catches up.

Sometimes the truth exists long before someone is willing to look closely enough to see it.

Sometimes science itself has not fully caught up with the body standing in front of it. CSF venous fistulas, for example, have only been recognized in modern medicine for about a decade. (For example, my aunt had Lyme’s disease long before it even had a name.)

Sometimes the correct testing simply has not been completed yet, or the right specialist has not yet been consulted.

And sometimes healing begins not when suffering disappears completely, but when a person finally realizes they were never crazy for feeling the storm in the first place.

Pain took my old future; now I am building a new one from whatever remains.

Medical Ribbon design - MJ Felt sketchbook

This space reflects my personal experience as both a nurse and a patient, along with general medical information. It is not a substitute for professional medical advice, diagnosis, or treatment. Please speak with your own healthcare provider about your individual situation.

She built her nest directly above our back porch light, somehow choosing one of the busiest parts of our home to raise her babies. The dogs went in and out beneath her. The door constantly opened and closed. We talked to her quietly every morning and checked on her throughout the day like neighbors making sure someone was doing okay.

And slowly, she seemed to recognize us too. She stopped flying away every time the door opened. She would simply watch us, calm and observant, while guarding those unmistakable blue eggs tucked beneath her. It became part of our daily rhythm.

My husband and I found ourselves structuring parts of our day around checking on her. The kids would peek out the window. I started taking pictures from my zero gravity chair under the gazebo. Even when my body could not tolerate much movement, I could still observe her. Listen to the birdsong. To pay attention to the miracles of spring through the pain that I feel.

I heard it before I fully understood it. It was around 11:30 at night, and I heard a sharp, sudden disruption that didn’t belong to the quiet rhythm of our yard. I heard Robyn struggling and shrieking. Her nest was just below our bedroom window, which I had partially opened to let in the cool spring air. She had been attacked.

I quickly hobbled downstairs and told my husband I thought something had happened to her. He went outside and took a picture of the nest. There was one feather left behind with the four eggs. Robyn never returned that night.

Over the next day, we slowly pieced together what had likely happened. A screech owl. A nest left vulnerable in the way nature sometimes allows, even when we desperately wish it wouldn’t. And once daylight came and I really observed the surroundings, it became obvious the attack had been far worse than I initially understood. The struggle had been startling, but swift.

We gave her time to come back. Nearly ten hours. It was forty-one degrees outside. “Batman,” as we jokingly called her mate, returned once and removed the feather from the nest, but Robyn never came home. And when all of it finally hit me around 9:30 the next morning, I stood on the deck taking pictures of the obvious aftermath and just started sobbing.

Not a quiet tear. The kind that catches in your chest and doesn’t let go. I remember looking at what was left and feeling something deeper than sadness. It felt like grief that had already been sitting beneath the surface suddenly finding somewhere to go.

I later told my therapist the story and asked her why it affected me so deeply. She said something simple: when you have very little control over what is happening inside your own body and nervous system, witnessing fragility up close can break something open emotionally. That explanation felt painfully accurate.

I brought the nest inside temporarily while I tried to contact wildlife rescues and nature centers.

And when I say “tried,” I mean I spent nearly three hours making phone calls, leaving messages, researching rescues, contacting nature preserves, and trying to figure out if anyone nearby could take over.

At one point, my brother-in-law jokingly gave me the number to a local KFC, which, admittedly, was darkly funny in the middle of all of it. My father-in-law sang, “Let it Go.” Not everyone thought I was doing the humane thing by continuing to try. Part of me understood what they meant. I’ve also always been this way with animals, which is why my family just accepts that now. I have even been known to take moths and spiders that are inside of the house and place them back outside to “rescue” them.

Some of my favorite memories are from when I was younger. My sister and I setting alarms every two to three hours to feed baby rabbits. Sometimes they were our pet rabbits, sometimes they weren’t. I remember one feisty group of wild rabbits my dad accidentally hit with the lawnmower. We didn’t hesitate. We just tried. And that group survived.

The oldest example of that instinct is still alive: my mom’s cat, Cinder (20 years old), pictured below.

She came from a litter of kittens that had been dropped off at Petsmart while I was working there during college while pursuing music and English education. Of course, I immediately volunteered to help, setting alarms through the night again just like my sister and I had done throughout childhood with baby rabbits and other tiny creatures that unexpectedly found their way into our care.

That litter was incredibly young, fragile, and exhausting to care for, but they survived and eventually went on to have wonderful lives with loving families. At the time, my husband and I were only dating. We were not even engaged yet. Looking back now, I think he probably learned very early on exactly who he was signing up for.

Needless to say, when I saw the nest, the eggs, the absence of the mother…this wasn’t new behavior. I felt like I needed to step up and take care of the situation and honestly, I realized it wasn’t safe anyway with that screech owl around and the cold temperatures.

It was just me, in a situation I couldn’t ignore. I took the nest down and kept it warm with heating pads. I was exhausted, physically limited, and trying to care for something incredibly fragile while also navigating my own body and responsibilities at home. But another part of me simply was not ready to stop trying while there was still warmth and movement left.

And then something unexpected happened while I was still clinging onto hope for a wildlife rescue. Two of the eggs hatched. I had genuinely believed they were no longer viable after the cold exposure. I was completely unprepared.

I have also realized something harder about myself through this rare disease/chronic pain story. I have been realizing that for most of my life, part of my sense of worth came from being needed. From helping others. Caring for people, animals, students, patients, anyone who needed something from me. I do not think that instinct is bad, but illness has forced me to confront how deeply tied my value became to usefulness. And maybe that was part of why I kept trying with the hatchlings, even when the odds were realistically very low.

There was never truly a rescue story waiting at the end of this one. Deep down, I think I knew that.

But unlike so many other times in my life, I am trying to measure the experience differently. This time I did not measure my success by the outcome. I don’t think it should be measured by whether I successfully saved something or whether the immense effort I gave produced the ending I wanted.

This time, I treated this as a once in a lifetime experience. I am also trying to accept that this experience should be measured more on whether I showed care while staying present in the moment. And I did to my fullest capacity. All of the spoons, if you know what I mean.

I gave what I could physically and emotionally give within the limits of my own body, and I am trying to let that be enough. And I learned a lot about birds, about robins, and it was a reminder of how delicate and magical new life is - whether it be a newborn baby, a newborn robin, or a freshly blooming plant, it matters.

I think that may be one of the hardest lessons chronic illness teaches:
that worth cannot only exist in what we successfully fix or save. It teaches us limits, boundaries, and opens our eyes up to the systemic difficulties that come along with rare disease and chronic pain.

And maybe that is also why I keep returning to nature lately in general.

When you become partially bedbound or chronically ill, wellness begins to look very different than the versions most people imagine. It is no longer productivity, intense exercise, or some perfectly curated morning routine. Sometimes wellness becomes much smaller and far more primal than that.

A window open on a tolerable day.
Birdsong interrupting pain long enough for your nervous system to unclench.
A zero gravity chair under a gazebo.
Filtered light instead of harsh light.
A moment where your body softens instead of braces. Heated blankets. Ice packs. And tons of pillows.

Living this way has forced me to pay attention to regulation in a way I never had to before. I notice sound differently. Temperature differently. Overstimulation differently. Even rest itself feels less optional and more like survival.

And while nature does not cure what is happening inside my body, it does something else that feels equally important: it reminds me that I am still part of a living world even when illness makes my own world feel very small.

Maybe that is why Robyn mattered so much. She gave me something outside of pain to care about for a little while. Something living. Something fragile. Something rhythmic and real.

And in the middle of all the uncertainty surrounding my own body, I think I needed that more than I realized. I painted the eggs in watercolor and soft pastels because something about them felt impossibly delicate and hopeful at the same time.

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Maybe that is why what happened in our backyard affected me so deeply. One of the hardest parts of chronic illness is realizing that you are not only grieving your health.

You are grieving versions of yourself.

The version that could move freely without calculating pain afterward.
The version that could make plans without hesitation.
The version that felt dependable, productive, capable, energetic, spontaneous.
The version that did not have to think about nervous system regulation, positioning, lighting, medications, appointments, recovery time, or whether your body would cooperate that day.

And somewhere in the middle of all of that grief, many of us are quietly trying to figure out who we are now. Not just physically, either. It’s more that that. Who am I now? Personally. Emotionally. Socially. Spiritually.

Illness changes relationships. Routines. Careers. Creativity. Confidence. Sleep. Independence. Sometimes even the way we experience the world itself through sound, light, touch, and overstimulation.

It can become very easy to feel isolated inside that experience, especially when the outside world continues moving at full speed. But if there is one thing this life has taught me, it is this: none of us are grieving alone.

There are thousands of people quietly rebuilding themselves in hospital rooms, in physical therapy appointments, in dark bedrooms with heating pads and ice packs, in waiting rooms, in online support groups, and in moments where they wonder whether anyone truly understands how much their life has changed.

Maybe healing is not always about “returning” to who we once were. Maybe healing is learning how to meet the new version of ourselves with compassion instead of shame.

I do not have all the answers yet. Honestly, most days I am still figuring it out in real time. But I hope people who find this space know they are not alone in the grief, identity shifts, fear, anger, adaptation, or exhaustion that chronic illness can bring.

There are still meaningful lives waiting for us inside all of this. Even if they look different than we originally imagined.

— MJ Felt

Your heart leaps with joy

at the first toothless smile

Or the first grasp of a toy

That is filled by memories

Of their first walk

Or the mamas and dadas

The first time they talked

Accompanied with mesmerization

We watch them continue to grow

The first day at school

And our pride overflows

And that is all spectacular

And should be celebrated

And the magic of those firsts

Make us extremely dedicated

To memories that have been impacted

By all of those first triumphs

While the lasts hide in the shadows

And happen in silence

The last time they called me mommy

I never even noticed it

And I could never predict

The last time they needed their special blanket

The last time that they would want me to sing

As I stroke their hair and tuck them in

Or the last time they would let me pick out their clothes

Or they wanted that doll lying by them

And as they get older

I realize that each season must begin

And with that comes always

A season that must end

But interestingly enough we celebrate

The first day of summer

But the last day of spring

Is not recognized or muttered

So I challenge you to celebrate the lasts

Even though they are harder to identify

To cherish each day and know this could be the last of lasts

and that we must recognize

And when the last of lasts comes

To those that we love dearly

Let us recall all of the memories

So that we can remember clearly

That life is more than beginnings and endings

In fact, what counts is the middle

So often I sit and ponder what truly matters

And I constantly come across this riddle

We celebrate the firsts and cherish the lasts-

Like a new baby, graduation, or promotion

But often forget that the greatest lessons are learned

In all of life’s chaos and commotion

That who we once were and what we become

Is a gradual change in motion

That is greatly influenced by those we are around

And their genuine care and devotion

And through all of this a reminder that often life’s focus

Is actually quite a contradiction

Because it is not the firsts or lasts that are the most important

But the journey fits more of this description

-Melinda Jean (MJ) Felt (2024)

Digital media art-MJ Felt (April 2026)

Thanks, as always, for reading and supporting my creative outlets through this chronic pain/disease journey. And thanks to a special Substack friend for reminding me about the power of poetry and writing during this difficult journey.

In a song of hope,

MJ

I had two neurology appointments yesterday, and my health, treatment, movement, and needs are all moving at a faster rate than I can physically tolerate.

They mattered. Of course they did. They always do. The preparation, the mental cataloging of symptoms, the translation of something deeply lived into something clinically acceptable. I feel an intense pressure to explain myself in a way that is both precise and believable at the same time. I am working on writing about them, but I am so tired of focusing on my health and pain.

I have had the chance to be outside more. It’s definitely not in the way I used to be. I am unable to move freely. There is still calculation involved. No bending, lifting, or twisting. Even positioning matters. I find pain relief in lying flat. And then, layered on top of that, there is the careful negotiation between light, pain, and what my body will allow.

The solution I have found, for now, is being able to lie down in a zero gravity chair under the gazebo. The light, when unfiltered, can feel like something sharp. Something invasive. So I soften it. I create a version of outside that my body can tolerate.

And when I have gotten myself as comfortable as possible, I just breathe in the scent of nature. It always comes with a strong mixture of grief and longing. But this spring in particular, I found myself doing something different. I listened.

I have always loved music. Structured music. Intentional music. The kind that is composed, practiced, refined. I was a K–8 music teacher for ten years, teaching both beginning and middle school bands and choirs. I wholeheartedly believe in the power of music.

But what I experienced here was something else entirely. It was an unscored symphony of nature, layered without permission. The beauty of those chirps and bird songs brings a sense of peace to me every day. Alongside that, I get to watch and observe our latest miracle of nature.

I named her Robyn. (A wonderful aunt of mine also spells her name with a “y” instead of an “i,” so there is my reasoning behind her name.)

Her name is Robyn. And her mate, who we also watch, doesn’t have a name yet, although I have considered calling him Batman.

She built her nest on our back porch light. Not hidden in a tree or tucked away somewhere quiet, but right there in the middle of our everyday life. Where the door opens. Where our two dogs go out. Where movement happens whether it’s convenient or not.

And still, she chose it. She laid a total of those unmistakable blue and for weeks now, we have been watching and taking snapshots of our backyard momma. And I find myself just returning to her. I watch the my family members quietly checking in when they let the dogs out. We even talk to her quietly.

She knows us now. She seems comfortable enough with the dog routine. We can open the door, step onto the porch, and she will often just look at us. There is a kind of understanding there. We do not touch the nest. We do not interfere. And she, in turn, does not abandon it. It has become a quiet rhythm in our home.

My husband has been just as drawn to it. We have always loved being outside, but this feels different. Slower. More intentional. As if something small has gently gathered all of us into the same place.

We even bought a camera, trying to set it up without disturbing her in time to watch the eggs hatch. It feels as if we are being invited into something we don’t want to miss.

I started using the Merlin Bird ID app at the recommendation of a friend. I have found it to be a valuable tool to combat long stretches of time being nearly bedbound. With this app, you can record the environment and it will identify birds based on their specific sounds and songs.

There have been so many moments where I’ve opened the window because I cannot physically make it outside. Michigan doesn’t always cooperate with temperature, and my body definitely doesn’t tolerate cold weather. But on the days I can tolerate it, I open the windows and let the sound come in.

I really began paying attention to their sounds when all I could do was tolerate silence. For some reason, the bird sounds have always been soothing, but in the darkest of nights with sleep nowhere to be found due to unimaginable pain it began to represent more. The robin’s call…one of the first to sing in the morning…meant I had survived another night.

Lately I go outside almost intentionally, like I am trying to learn the chorus of bit by ear. So over the past year and a half, I have very slowly learned the birdsongs not as chaotic, but something to learn from. In fact, just this past weekend, I was able to solve a mystery that I have had from my bedroom. The culprit behind one of the more raucous, insistent calls was a third woodpecker in our woods, a northern flicker. I haven’t actually seen it yet, but the song registered. I now know which direction to look in, because the squawk sounded more like a beginning reed instrument player. This ongoing mystery woodpecker makes it more intriguing, like I am more present in sound than in sight.

Up until now, I had only noticed the pileated woodpecker and our red-bellied woodpeckers, who move through the trees more quietly but just as steadily. The pileated, especially, has a kind of local fame in our subdivision. A few years back, we genuinely thought someone was vandalizing car mirrors, only to discover that it was him, or her, repeatedly pecking at its own reflection. It has also occurred to me once on my driver’s side mirror, and let me tell you something….I was more scared than that bird was. What our neighborhood has come to realize is that what we had assumed was destruction was simply a creature responding to something it didn’t quite understand.

I painted our neighborhood celebrity in my watercolor journal several months ago.

Original mixed media—watercolor and pen, MJ Felt.

P.S. If anyone is curious, MJ comes from Melinda Jean. But for me, it carries something more sentimental. Some of the most supportive people in my life have called me MJ since my earliest memories.

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There is a quiet shift that happens when your world becomes smaller, physically. When your range of motion narrows, your field of view changes with it. Not because the world changed, but because you did. And I am not saying this is the change I wanted, but it is the reality I am living in right now.

And I think that is where I find myself. I am still in pain. I am still navigating a body that does not move the way it once did and learning the limits of what I can and cannot do. I am spending the majority of my days in bed, or recovering from the effort it takes to leave it.

But I am trying to notice, because I love and miss nature. And I find myself paying attention in a way I never had to before. Because when your world becomes this small, you begin to understand that attention itself becomes a kind of resource. What you focus on matters. What you let in matters. And when your body cannot move freely through the world, you begin to look for ways the world can still reach you.

Sometimes that looks like opening a window. Sometimes it looks like lying under a gazebo, carefully managing light and position just to tolerate being outside Sometimes it looks like learning birdsong by ear, following sound the way you would follow a melody, letting it occupy space that pain would otherwise take up completely. Sometimes it means trying to capture the beauty of nature in creative outlets.

It does not fix the pain. It does not change the diagnosis. But it changes what else my mind is able to hold. And for someone who is bedbound, who is navigating long hours where the body demands stillness whether you want it or not, that shift matters more than I would have ever understood before living it.

I often wonder why nature, why sound, why something as simple as birdsong can steady something so complex inside of me…so I am beginning to explore it more intentionally. Not just as a moment of relief, but as something worth studying. Something worth understanding. Because if there are ways that the brain and body respond to nature, to sound, to attention, in ways that soften even a small part of this experience… then that matters.

And I want to learn more. Because of where I am now. Because of what my body has required of me. And because there is a memory my sister loves to tell that she remembers about me in childhood…

She asked me to come outside and play, and I refused because I wasn’t finished reading the dictionary. Not part of it. The entire thing. She asked me what letter I had made it to, and when I answered “F,” she rolled her eyes, sighed loudly, and went on her way.

I think about that version of me sometimes. The one who needed to understand things fully. The one who stayed curious, even when no one else quite understood why it mattered. And I have realized that part of me is still here. And now, that same curiosity has somewhere new to go. Toward understanding why nature helps. Why sound steadies. Why something as simple as birdsong can reach into a body in pain and soften even a small part of it. Because if I am going to live this way, I want to understand it.

In a song of hope, MJ

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I would genuinely love to know… has nature helped you cope during difficult times? If so, what does that look like for you?

There is a moment in medicine that rarely gets named, and it is not the moment something is discovered, but the moment something is seen and quietly set aside because it does not fit the expected story. Not because it is invisible or insignificant, but because it does not align with what has already been decided.

This is the space where patients begin to disappear inside their own records, where documentation continues to grow while understanding quietly falls behind. It is a space that does not feel dramatic from the outside, but from within, it feels like watching your own story unfold in real time while realizing that no one is holding all of the pages together long enough to understand what they are reading.

Condensed Clinical Narrative

By early 2024, one year after a traumatic motor vehicle accident, my daily life had already shifted in ways that were impossible to ignore, even if they were not yet fully understood.

I found myself spending more and more time lying flat simply to function, as pain worsened with standing, sitting, lifting, or even basic movement. Each attempt at treatment seemed to move me further from stability rather than closer to it. Physical therapy made it worse. Chiropractic care made it worse. Inversion therapy made it worse.

Everything pointed in one direction, and that direction was progression.

By late spring, I had documented three full pages of neurological decline in a structured timeline, not because I was searching for answers in a theoretical way, but because I was watching my own function change in real time and needed a way to hold onto what was happening before it was minimized or forgotten.

This was not vague. This was measurable. And here is a rough clinical summary of those documented pages.

Neurological Changes

The neurological symptoms were not subtle, and they did not behave like something transient or easily explained away.

My symptoms followed a clear progression over time. I initially experienced muscle spasms and tremors, along with intermittent but increasingly severe neurological pain. These symptoms expanded beyond a single limb and were followed by progressive right sided weakness. Sensory changes developed, including loss of sensation in my fingers and an increasing inability to perform fine motor tasks. Balance instability led to falls, and symptoms became more persistent rather than episodic. This progression ultimately culminated in right foot drop and persistent right sided sciatica.

This was not anxiety presenting as physical symptoms. This was physical function changing over time, and it was happening in a pattern.

Multisystem Involvement

As time went on, the pattern expanded beyond the neurological system and began to involve other areas of my body in ways that made it clear this was not a single isolated issue.

Bladder dysfunction and retention developed alongside bowel dysfunction that required manual intervention. Orthostatic symptoms made being upright difficult, and sleep became fragmented and unreliable. I experienced weight loss and gastrointestinal changes that did not align with stress or lifestyle, but instead pointed toward systemic involvement.

These were not separate complaints. They were threads of the same story.

Vision and Sensory Changes

My vision began to shift as well, not in a way that could be corrected with a simple prescription, but in a way that felt unstable and inconsistent with what I had known before.

Blurred vision, floaters, flashes, and transient vision loss became part of my daily experience, accompanied by photophobia and difficulty adjusting to light. Tinnitus and sound sensitivity layered into that experience, along with vertigo and pressure based headaches that did not behave like typical migraines.

These symptoms were reported, repeatedly, and often with careful description, but they were not consistently tracked or integrated into a larger clinical picture.

One of the First Imaging Findings

At the beginning of this process, there was already a clue that carried more weight than it was given at the time. A 3.4 centimeter Tarlov cyst at S2 to S3. It was documented. It was measurable. It was present in the exact region where many of my symptoms were emerging. And yet, it was treated as incidental.

When I asked about it, I was often met with uncertainty or dismissal. Some physicians shared that they had been taught these cysts are always incidental. Others acknowledged that they were not familiar with them at all. Even trainees, who were still forming their clinical frameworks, reflected the same assumptions.

The finding was not invisible. It was simply not interpreted.

The System Response

The system response was never allowed to fully form, not because the information was absent, but because the initial finding itself was dismissed. From the beginning, the possibility that this could represent a meaningful diagnosis was minimized, and that shaped every step that followed. As I continued to advocate for recognition and ask whether this finding could explain my symptoms, the response did not become more investigative. It became more resistant. The more clearly I described the pattern, the more my experience was questioned, and over time, that resistance began to feel less subtle and more like a form of systemic invalidation.

I was told for a long time that Tarlov cysts were “incidental.” Benign. Nothing to worry about. Actually, that was pretty much the consensus until neurosurgical findings proved otherwise. But when something lives in your spine, wraps into your nerves, and changes the way you move, sit, and exist, it stops being incidental.

This is how it feels in my body. Rooted. Pressurized. Alive. Last year, this artwork became one of the first places where I felt safe enough to begin processing the pain I had endured over three years…pushing my body through symptoms so severe that parts of my life began to disappear. Not all at once. But slowly. Quietly. Persistently. Almost insidiously.

Art gave me a way to see what I was carrying when the language around it kept failing me. Sometimes the body tells the truth long before the system is ready to hear it.

— MJ

Two Major Turning Points within the Past Year

The first major turning point in my care occurred in June of 2025, when I underwent sacral surgery that confirmed extensive structural pathology. The operative findings included a large caudal Tarlov cyst involving the S4 and S5 nerve roots bilaterally, additional cysts at S2 and S3, dorsal dural ectasia, and nerve root involvement requiring microsurgical repair. .What had once been labeled incidental was revealed to be anatomically significant and directly aligned with the symptoms I had been describing. This was not a theoretical explanation. It was structural confirmation that the early finding had meaning.

The second turning point came more recently, with the identification of a thoracic CSF venous fistula at T7 to T8. This finding provided a unifying explanation for years of positional headaches, neurological progression, and multi system involvement that had previously been fragmented across different diagnoses. It did not replace the earlier findings, but rather added another layer to a pattern that had been present all along. Together, these two moments reflect what is increasingly being supported in emerging research and in the lived experiences of patients with CSF pressure disorders, CSF leaks, and Tarlov cyst disease.

Layered Evidence

What these turning points also reveal is the cost of not being believed early. These conditions are not minor, and the pain associated with them is often severe, persistent, and life altering. When symptoms are minimized or dismissed, patients are left to navigate progressive neurological decline without appropriate recognition or support. Lives are disrupted, independence is lost, and the burden extends far beyond the physical body into every aspect of daily living.

My health, my capabilities, and my life have been permanently changed by this process, and I am speaking about it because this is not an isolated experience. When patterns are ignored and patients are not believed, the consequences are not abstract. They are lived, daily, and often devastating. Looking back, the evidence had been present in layers.

An early brain MRI that appeared normal from a radiologic standpoint, but did not reflect how my body felt or functioned. A concurrent spine MRI that documented a large Tarlov cyst, which was acknowledged but not considered significant.

A surgical report that later confirmed extensive structural pathology involving multiple nerve roots, including large cysts, dural changes, and abnormalities that required repair.

Each layer added information. But without integration, information alone was not enough.

A Stark Contrast: Where the Gaslighting Lives

Structural pathology existed within my body, but my symptoms were often described through a different lens: psychosomatic, anxiety related, depression related, emotional. Requests for further evaluation were sometimes documented as demands, and in certain settings, pain management was limited or denied, even when the clinical picture suggested something more complex.

At the same time, even brief emergency encounters reflected the pattern clearly, noting neurological decline, weakness, and multi system symptoms that had been present for years. The pattern was visible. It just was not followed.

Gaslighting in medicine is often not intentional, and it does not always present as overt dismissal. It exists in the quieter spaces where symptoms are documented but not integrated, where worsening is reported but not investigated, and where objective findings are reframed to fit a simpler narrative.

It sounds like reassurance on the surface, but underneath, it creates a gap between what is experienced and what is believed. Over time, that gap grows, and a patient’s condition and the perception of their overall condition can be mixed into a confusing and traumatizing narrative…my symptoms aren’t real…I must power through them…I must be losing my mind…

References and Emerging Research

Recent advances in spinal CSF leak research are beginning to re-evaluate long standing assumptions about so-called incidental findings, particularly at the level of the nerve root sleeves where Tarlov cysts form.

A multicenter study recently published in the American Journal of Neuroradiology (2026) examined sacral dural tears in patients with spontaneous intracranial hypotension and identified the sacral spine as an under-recognized source of cerebrospinal fluid leakage. These findings highlight that sacral pathology may not be absent, but rather under-evaluated, particularly when standard imaging does not capture low flow or intermittent leaks.

Research from leading CSF leak specialists, including Dr. Wouter Schievink, has demonstrated that many cerebrospinal fluid leaks and CSF venous fistulas arise from abnormalities of the nerve root sleeves. These are the same anatomical structures involved in the formation of perineural or Tarlov cysts, reinforcing the importance of evaluating these regions within the broader context of CSF dynamics.

Advanced imaging techniques such as digital subtraction myelography have shown that a significant number of leaks are missed on standard MRI and CT myelography, particularly when they are low flow, intermittent, or position dependent. This has important implications for patients whose symptoms persist despite “normal” imaging findings.

Educational and clinical resources from the Spinal CSF Leak Foundation continue to expand awareness of the complexity of spinal CSF leaks, including the role of connective tissue disorders, structural vulnerabilities of the dura, and the evolving understanding of how Tarlov cysts and CSF pressure disorders may coexist or interact. Their work has been instrumental in bridging gaps between patient experience, clinical recognition, and emerging research.

Foundations instrumental to providing education and research like the Spinal CSF Leak Foundation or Tarlov Cyst Disease Foundation are great places to start researching. Also, NORD, or the National Organization for Rare Disorders list information about rare diseases. Both Tarlov Cyst Disease and SIH (spontaneous intracranial hypotension) are listed here.

The growing body of research does not suggest that every structural finding is clinically significant, but it does challenge the assumption that these findings are insignificant by default.

Callen, A. L., et al. (2026).
Sacral dural tears in spontaneous intracranial hypotension: Imaging phenotype and treatment outcomes in a multicenter cohort. American Journal of Neuroradiology.

Kranz, P. G., Gray, L., & Malinzak, M. D. (2016).
Spinal CSF leak imaging and treatment. Neuroimaging Clinics of North America, 26(2), 343–361.
https://doi.org/10.1016/j.nic.2015.11.010

Luetmer, P. H., et al. (2012).
Dynamic CT myelography for the identification of CSF leaks. American Journal of Neuroradiology, 33(4), 690–694.
https://doi.org/10.3174/ajnr.A2847

The Reality

My neurological symptoms did not begin with a mystery. It began with a high speed collision with a semi truck. There is nothing unclear about the force that the body absorbs in that kind of impact. The initial imaging showed that my bones were in place, and I was sent home with diagnoses of whiplash and contusions, along with the sense that I was lucky to have survived. And in many ways, I was. But survival is not the same as being uninjured, and it is not the same as being understood.

The reality now is that I am still largely confined to bed, often for most of the day, because I cannot tolerate sitting on my sacral spine due to the severity of pain following myelography and ongoing neurological symptoms. Daily life has narrowed in ways that are difficult to fully explain, especially when the desire to be outside, to move, to create, and to participate in the world is still very much there. At the same time, there are growing concerns within my family related to serious health conditions, including cardiac issues, which adds another layer of uncertainty and weight to an already complex situation. There is a genetic component being considered, and with that comes the quiet fear of what this could mean for my children, even if I am not yet ready to fully explore that in words.

Simple things now require significant effort. Upcoming medical appointments often involve traveling long distances, navigating pain just to get there, and preparing mentally for the possibility of being heard or dismissed again. There are moments where all I want is to be able to exist, to create, or even to have a conversation without the constant presence of pain shaping every thought and movement.

Isolation has taken a toll on my mental health in ways that feel both expected and difficult to accept. Being in a bedroom when I want to be outside, when I want to be present with my family and the life we built together, creates a kind of grief that is ongoing rather than resolved. And yet, within that reality, I am learning to take things one moment at a time. I keep reminding myself that most days, I am not in the same level of pain I was in before sacral surgery, and there are small but meaningful signs of neurological function returning. And whenever I run into doubt if the sacral spine surgery was worth it, I move my right toes. There were roughly two years of my life where prompting them to move didn’t lead to normal movement responses. Having the ability to move my leg matters more than most people realize.

There is also a part of this experience that is harder to describe, which is what it does to a person to lose control of their body while being told, repeatedly, that it is their fault or that nothing is wrong. When that message comes from one provider, it is disorienting. When it comes from many, it becomes something else entirely. It begins to shape how you see yourself, how you interpret your own symptoms, and whether you believe you deserve care at all. Over time, that kind of experience can become as damaging as the physical condition itself.

In the middle of all of this, I am also learning something I did not expect, which is how to ask for help and how to let go of the belief that independence is the most important measure of strength. My support system has carried me in ways I could not have imagined. My therapist and psychiatrist continue to provide steady, consistent care and understanding. My sister has been a constant presence. And my three children give me a reason to keep moving forward, even on the days when everything feels heavy.

I also recognize the ways in which we are supported that not everyone has access to. We have financial stability and health insurance, and I have never had to choose between medical care and basic needs like food or housing in the way that many people I know have had to. That awareness does not erase what is difficult, but it does shape how we hold it. As a family of five, we try to count our blessings in small, intentional ways. I started a gratitude jar at the beginning of 2026, filling it with small notes as a reminder of what is still present, even in the middle of uncertainty.

A Final Note

If this piece meets you somewhere in your own story, you’re welcome to respond. This space holds more than one voice. You’re welcome to share your experience or reach out. I may not always have the capacity to respond right away, but I do see you.

- MJ

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This piece is not meant to offer medical advice or replace the guidance of a provider. It is a reflection of my lived experience as both a patient and a nurse, and an attempt to put language to something that too often goes unspoken. My hope in sharing this is not to generalize every case, but to bring acknowledgment to a pattern that continues to affect those living with chronic illness, rare disease, complex pain, and conditions that do not fit neatly into existing frameworks. There are many who are navigating similar paths, including those who are disabled, elderly, or without the resources to advocate for themselves, and their stories deserve to be seen with the same care as their clinical data. If this piece does anything, I hope it encourages a more thoughtful approach to listening, to pattern recognition, and to the understanding that what is written in a chart is only part of the story.

I love spring so much. Just a couple of weeks ago, I was telling my husband how much I missed a good Midwestern thunderstorm, the kind you can sit and watch as it slowly builds and rolls in. Around here, we are taught from a young age to respect storms, to watch them closely, not necessarily to fear them.

Twister (1996) has always been one of my favorite movies. I was 13. And I had already seen a tornado with my own eyes.

Sigh… that dream of being a tornado chaser is officially over in this body. But that does not mean I do not still watch.

I still stand outside or at the window, taking videos of lightning when I can, studying the way the sky shifts and the energy builds. My husband and I bonded early on over our shared love of meteorology, the curiosity of it, the beauty of it, the unpredictability.

Severe thunderstorm warnings have already been issued about 45 miles from us. The sky is changing. The air feels different. I can feel that familiar electricity building. And somewhere along the way, the storm stopped being something outside of me.

This past weekend, I tried something different. I slowed down.

Cold has been brutal on my body this year, and we had an extremely cold winter this year. It is not just uncomfortable. It hurts deep in my nerves and muscles, the kind of pain that makes even small movements feel like too much. But the weather shifted, and with it, something in me softened too.

I noticed the first bloom of a flower I planted by my mailbox. I watched birds I do not usually see, passing through on their way somewhere else. I have been trying to learn their sounds while lying down, letting their patterns become part of my days.

Most of my time with nature now is spent either standing or lying down, because sitting is often even more painful. So I adjust. I stand when I can. I rest when I have to. And I look outward. At the feeder. At the trees. At the sky.

Lightning cracked across the sky, unpredictable and alive, and something in me recognized it. I started sketching it, trying to understand it, trying to hold onto it. I think I want to explore lightning more in my art. There is something honest about it. It does not apologize for being powerful. It does not ask permission. It just is.

And I cannot help but notice the parallel. The way lightning branches. The way it pulses. The way it carries energy through invisible pathways. It reminds me of the nervous system. Of signals firing. Of systems that are meant to work seamlessly until they don’t.

When those systems fail, the power does not disappear. It just becomes unpredictable.

Just an experiment for myself.

Recording the lightning. Slowing it down. Watching the way the energy moves, trying to understand it through an artistic lens.

My youngest daughter helped me with the technology. At one point, she pointed to one of the images and said it looked like a country that is currently in deep trouble. Even in that moment, I was reminded how we both see the world in patterns, in shapes, in meaning.

In the lightning, I saw the shape of a tree, a quiet reminder that some bonds run deep in deeply powerful ways, rooted in love and acceptance.

My youngest daughter sat with me and showed me how to crop images out of the video footage I was taking of the storm. It was a simple moment, but it meant everything. Me learning. Her teaching. Sacred time together. The two of us turning something fleeting into something we could keep.

There has also been a harder truth settling in…

I think part of me was still hoping for a full miracle. A return to who I was before. The girl who climbed every tree. The infielder who always dove, always slid, always went all in.

There has always been something in me that says give everything you have. Every play, every moment. Just try your hardest. I believed I could push through anything. Even physical pain, at least for a little while.

That part of me is still here. But she is learning something new now. I am learning not everything can be powered through. That some things are not meant to be pushed past. A body has limits, even when the spirit does not. And that realization comes with grief.

Deep grief. And anger.

I have always loved thunderstorms. Even their destruction never scared me the way it did others. My family still tells the story of me as a child standing outside as a tornado touched down less than a mile away, while everyone else ran for shelter. I was not reckless. I was mesmerized.

That same intensity lives in me still. But now the storm is not outside. It is inside my body. And I am learning what it means to live with that.

There is anger at how long it took to be heard. Anger at a system that did not listen. Anger at the reality that if someone had seen this sooner, believed it sooner, acted sooner, maybe I would not be here. But the truth is, I will never know. And that is its own kind of grief.

So I am learning that is so hard to learn…how to accept what I cannot change, while still allowing myself to grieve what was lost.

Give me time for that. Give me time to heal in body and mind. Give me time to learn this new version of myself.

I pushed too long, too hard, too far. Now I have to learn how to live differently.

Because both things are true. I am moving forward. And I am still mourning.

Due to my current restrictions and pain levels, I have created an art “standing desk” at my dresser. Right now, my life is a balance of resting and walking as much as I can, while doing my best not to bend, lift, or twist. I am also dealing with a severe sacral nerve flare, which immediately spikes with sitting. There is so much electricity from the waist down.

This is the first time I have been able to watercolor in over a month. Sometimes I just sit and stare at my brushes, and cry. Creating anything at all now comes at a cost I never could have imagined.

And right now, I am in the waiting.

Within the next two weeks, I will be seeing a neurologist, a neuro ophthalmologist, and a PM & R doctor. Things are moving with my health. I am beginning to build a team, and that brings me hope. But those appointments also mean work. A lot of advocacy. A lot of explaining. A lot of research to help others understand what has been happening in my body, because the findings are so rare. Even within rare disease, this feels rare.

I do not fully know what the future holds. But I do know my spine is forever changed. This is something I have to learn to live with. That part is exhausting.

I have been asking doctors to consider these possibilities for years. And now there is even more evidence that what I have been experiencing is real. I am hopeful I will be taken seriously. But there is something heavy about having to fight this hard just to be seen clearly, only to find out it is worse than you imagined.

This is where my story shifts into something bigger than just me.

Because this is not just about one patient. This is about what happens when rare disease, chronic pain, and neurological symptoms do not fit neatly into a system that depends on quick answers.

It is about how many people are told to push through, to try harder, to stay positive, when their body is already doing everything it can.

It is about how often strength gets mistaken for exaggeration, and persistence gets mistaken for anxiety.

And it is about how much damage can be done in the time it takes to finally be believed.

Advocacy, for me, is no longer optional. It is survival.

Not just mine, but for the people who are still where I was. Still trying to prove something that should have been seen all along.

I am hopeful. And I am tired. I am also restless.

Warm weather makes me restless in a way that is hard to explain. My body wants to move, to walk, to go, to be part of the world again. And I cannot, not in the way I want to. So I try to be thankful for what I do have.

The deck. The view of the woods. The birds. The storms. The stillness.

It is beautiful. It always has been. I just never saw it quite like this before.

And somehow, even while the storm within rages on, I am still here. Still noticing. Still learning. Still grieving. Still hoping.

In a song of hope,

MJ

On March 23rd, I underwent an embolization procedure for a suspected CSF venous fistula in the thoracic spine. The procedure itself was considered successful, and for that I am deeply grateful. However, in the days following, my pain escalated beyond what I could manage at home, ultimately leading to an emergency room visit. That decision was not made lightly. In fact, it was the last place I wanted to be.

Over the past three months, I had reached out to multiple providers trying to communicate increasing levels of chronic neurological pain from a rare spinal condition affecting my nerve roots—pain that was different, worsening, and specific. I was trying to avoid exactly what happened: needing emergency care. But when imaging returned “normal,” it brought an immediate and familiar wave of fear. Not relief. Because in my experience, “normal” does not always mean okay.

It often means unseen.  I have learned something in the emergency room that had nothing to do with medicine.  That truth can be present and still be treated like a rumor.

My body does not speak in lab values. It speaks in tides.
In pressure that rises behind my eyes.  In pain levels most people cannot comprehend.  In genuine fears of an unsure future.  

Do NOT Translate Me in Fluorescent Light

There is a language my body has been speaking for years,
not always in words
but in pressure,
in patterns,
in something that returns again and again.

And still, I find myself translating what should not require translation,
trying to explain what I already know in a system that often….waits……for proof before it listens.

Time itself moves differently there in the ER.
Not forward (9 1 1 )
but suspended.
Time measured not in minutes but in acknowledgment
in how long it takes to be seen…or not seen…

I was told my imaging was normal as if that should quiet everything.
It’s as if absence of visible cause could erase lived experience.
But my body does not speak in images alone.
It speaks in sensation. In specificity. In something I have learned to recognize.

And I remember thinking, not for the first time
What about the ones who don’t have what I have had?
Not the language. Not the support. Not the diagnosis yet.
Not the capability to keep asking, to keep returning, to keep being told to wait.

Because I have watched. In quiet spaces.
In support groups. People reach their limit.
NOT from lack of strength, but from the WEIGHT.

Of pain, procedures, and uncertain outcomes,
that does not resolve but compounds.

And somewhere in all of this, I have begun to feel
less like a person.
And more like a case.  
A question????
Something being studied.  Something being tried.  Something not fully understood.

(Surface work if you ask me 
because the depth required  to survive this  
does not show up, in charts, or summaries, or quick conclusions .)

And yet my body has been consistent
The entire time. Steady in its message.
Even when everything around it questions it.
Even when I am told to reconsider, to wait, to reframe...
(When so many speak to me as if I'm to blame or with shame.
)I did not want to go to the ER.  I "did my best" to avoid it.
I asked. I documented.
I reached out because I knew. I knew what that environment means.
For pain like mine.  For conditions like this.
For things that do not fit cleanly into expected patterns.
And still...I am here..
Learning... slowly...
PAINfully.
To accept what my body has been saying the entire time.

I sketched this piece during an emergency room visit while waiting for pain treatment.       What may have looked like stillness, or even calm, was actually survival.  Art has always been one of the ways I process and endure what my body cannot yet put into linear language.  This is not an original inspiration or idea.  (Even my pre-teen daughter joked about reviewing basic rules of sketching human anatomy when she saw it up on my drawing tablet.  How can you not help but love that?)

Personal Thoughts and Reflections

This reflection is not about any one person or moment, but about a broader experience many patients quietly carry. It lives in the space between what is felt and what is acknowledged. My hope is not to assign blame, but to invite awareness. Because there are forms of pain that do not translate easily into tests, timelines, or expectations, and yet they remain real, present, and deeply impactful.

There are experiences that exist outside the language we are most comfortable trusting. They do not always show up clearly in data or follow predictable patterns, but they are still lived in real time, in real bodies. And when those experiences are overlooked or minimized, the distance between patient and provider, between suffering and support, quietly widens.

And still, these experiences deserve to be taken seriously. Not only when they are measurable, but when they are expressed. Not only when they are understood, but when they are felt. Because listening, truly listening, has the power to close that space, and to remind people that they are still seen, still human, and still worthy of care.

(I also learned that I now understand why poets feel frustrated with the poetry option here. I debated on sharing something so personal, and this really took away from the experience.)

For years, my body was telling a story that I did not yet have the language to explain. What I was experiencing did not fit neatly into what I had been taught, even as a nurse. The structures I once memorized in school, like the meninges and spinal cord, became something entirely different when I had to live inside a system that was malfunctioning.

This piece is both an exploration and a translation. It is my attempt to understand what my body has been trying to say all along, and to share that understanding in a way that others can feel, not just study. When most people think about the brain, they imagine neurons, thoughts, memories, and emotions. But the brain does not sit alone inside the skull. It floats.

Inside your head and spine is a clear liquid called cerebrospinal fluid, or CSF. This fluid surrounds the brain and spinal cord and protects them from injury. It acts like a cushion, a temperature regulator, and even a delivery system for nutrients and waste removal.

Think of the brain as a delicate moon floating in a small ocean. Now imagine something else: the container that holds that ocean. That container is called the dura mater.

The dura mater is the tough outer membrane that surrounds the brain and spinal cord. The name comes from Latin and literally means “tough mother.” It is made of dense connective tissue and acts as the protective outer layer of the central nervous system.

For most people, the dura quietly does its job for an entire lifetime. But sometimes, the story becomes more complicated.

The Three Layers Protecting the Brain

If you peeled back the skull and looked at the coverings of the brain, you would find three protective types called the meninges.

From outside to inside they are: the dura mater (the tough outer layer), the arachnoid mater (the delicate middle layer), and the pia mater (the thin layer that hugs the brain itself).

Between these layers is the cerebrospinal fluid. That fluid flows from the brain down through the spinal canal and back again in a continuous loop. It pulses slightly with every heartbeat and every breath.

In other words, the nervous system is not a dry structure. It is a living hydraulic system.

The Spine is a Long Fluid Column

The brain and spinal cord share one long column of cerebrospinal fluid.

Imagine a clear tube filled with water that runs from your head all the way down your back. Inside that tube sits the spinal cord. Around it flows the CSF. And surrounding everything is the dura.

The system works beautifully when everything is balanced. But like any system that relies on pressure and fluid flow, problems can occur if the container changes shape.

Sometimes the dura stretches. Sometimes it forms small outpouchings. Sometimes fluid finds unexpected pathways.

The Weak Points of the System

Along the spine, nerves exit at every level. These nerves leave the spinal cord through small openings in the vertebrae.

Each nerve root is wrapped in a sleeve of dura. For most people these sleeves remain small and stable. But occasionally they stretch and form structures called perineural cysts. These cysts are sometimes called Tarlov cysts, named after the doctor who first described them.

They form when cerebrospinal fluid pushes outward into the nerve root sleeve, creating a fluid-filled sac. Many cysts never cause symptoms. But sometimes they grow large enough to affect nearby nerves.

And sometimes they appear in multiple places along the spine.

When the System Changes Shape

Doctors have several names for changes in the dura. You may hear terms like: perineural cysts, meningeal diverticula, or dural ectasia. At first glance those sound like completely different conditions. But structurally they often represent the same basic idea. The dura has stretched or expanded in certain places.

If you imagine the spinal fluid system like a long water balloon, these structures are like small bulges forming along the sides. Each bulge changes how fluid pressure moves through the system.

The Ocean of the Mind

Here is something many people never learn. Your brain does not sit heavily inside your skull.

It actually floats in cerebrospinal fluid (CSF). Without that fluid, the brain would compress its own blood supply under its weight.

The CSF acts like a buoyancy system. It lifts the brain and allows it to move safely with normal motion.

That is why some doctors describe the CSF system as an internal ocean protecting the nervous system.

Which leads back to the dura.

The dura is the structure holds that ocean in place. Without it, the fluid would not remain contained. Without the fluid, the brain would not float.

This is the system I’ve been learning to live within. What once felt invisible now has shape, movement, and meaning.

When Fluid Finds a New Path

Sometimes cerebrospinal fluid escapes the system. This can happen through small tears in the dura.

But there is another type of leak that doctors only began recognizing widely in the past decade. It is called a CSF venous fistula. A fistula is an abnormal connection between two structures. In this case, it means the cerebrospinal fluid space has connected directly to a vein. Instead of the fluid staying in the spinal system, some of it drains into the bloodstream.

This is very difficult to detect on routine scans. Why? Because the fluid does not pool outside the spine. It disappears into the veins.

To find these connections, doctors sometimes have to perform specialized imaging tests called myelograms, where contrast dye is injected into the spinal fluid and tracked in real time.

The Spine as a System

One important thing to understand is that the brain and spine function as one continuous system. Changes in one area can influence another.

For example:

• cysts may form in one part of the spine
• pressure may shift elsewhere
• fluid may redistribute over time

The system adapts. Sometimes it adapts well. Other times it finds unusual pathways to relieve pressure. That is why doctors sometimes see patterns of cysts, diverticula, and fistulas appearing in the same spine. They are different expressions of the same fluid system responding to stress.

When the Body Often Knows First

One of the most remarkable things about chronic neurological conditions is how often the body figures things out before imaging does.

Patients notice patterns. Certain positions may relieve pressure. Other positions may worsen symptoms.

For some people, lying flat helps. For others, turning to one side provides relief. The nervous system quietly learns what protects the spine. Years later, when imaging reveals the structural explanation, those patterns suddenly make sense.

The body was responding to real physics all along.

What the Dura Teaches Us

The dura mater is not something most people think about.

Yet it performs one of the most important jobs in the human body. It protects the brain. It contains the ocean of cerebrospinal fluid. It stabilizes the spinal cord.

And when it changes shape, the entire nervous system feels it. Learning about the dura reveals something profound about human biology.

Our bodies are not just structures. They are systems of balance. Fluid pressure. Gravity. Tissue strength. Motion. Adaptation.

When one part of the system shifts, the rest responds. Sometimes quietly. Sometimes dramatically. But always intelligently. Inside each of us is a protective sea. And surrounding that sea is a remarkable membrane that holds everything in place. The dura. The “tough mother”. The quiet protector of the brain’s floating world.

The Physics of Movement

When the spinal fluid system is stable, most people never think about gravity or pressure inside their spine.

They simply move. They run. They jump. They twist and turn without hesitation. But when the dura has been weakened or altered, those same movements begin to carry a different meaning. Sudden changes in pressure can matter. Sharp twists of the spine can matter. Even something as simple as rapid acceleration or impact can feel risky. Activities that once felt joyful can start to feel uncertain.

When the system changes, life changes with it. Learning about the dura and the cerebrospinal fluid system is fascinating from a scientific perspective. But science only tells part of the story.

When doctors describe findings like perineural cysts, dural ectasia, or CSF venous fistula, the words can sound small and technical. They appear as brief notes on imaging reports or in clinical summaries.

But those words describe something very real. They describe a system that no longer behaves the way it once did. For many people, the first thing that changes is to trust in their own body.

Living With the Memory of a Leak

One of the hardest parts of recovering from a CSF leak or fistula is the awareness that the system has already shown it can fail.

Even after treatment, there is often a lingering sense of caution. The nervous system remembers what happened.

There can be a quiet fear that the “dam” holding the fluid system together could leak again. Sudden movements may feel more intimidating. Certain activities may always carry a question mark.

Not because the body is incapable of healing, but because the memory of instability changes how a person approaches movement.

There are some activities that many people with spinal fluid disorders eventually learn to avoid. High-impact sports like softball, where quick twisting and sudden movement are constant. Fast downhill motion like skiing, where falls or abrupt stops can place intense forces on the spine. Even the sudden acceleration and drops of rollercoasters, which once felt exhilarating, can become something to think twice about.

None of those changes appear on a radiology report. But they become part of daily life. Those are the favorites of some of my times before the accident. And now, they are permanently gone.

Every diagnosis carries a quiet list of adjustments that patients begin to make.

Grief Is Part of Learning a New Body

This is the part that medicine rarely talks about. There is grief in realizing that some things may never feel the same again. Grief for the body that once moved freely without calculation. Grief for activities that once felt effortless. Grief for the version of yourself that did not have to think about spinal fluid dynamics.

But grief is not the same thing as defeat. It is simply the process of acknowledging that something meaningful has changed.

A Different Kind of Strength

The body adapts. The nervous system learns new limits and new rhythms.

Strength begins to look different. Instead of pushing through pain or ignoring warning signs, strength becomes the ability to listen carefully to what the body is saying.

To move thoughtfully. To protect a system that has already endured more stress than most people ever realize.

In that sense, understanding the dura mater and the fluid system of the spine is not only a lesson in anatomy. It is a lesson in humility.

The body is complex.
The systems that protect the brain are delicate.
And learning how to live within those realities requires a different kind of courage.

The Body Was Right Before the Tests Were

One of the strangest parts of living with a complex neurological condition is realizing that the body often knows something is wrong long before the medical system can prove it.

For years I described symptoms that did not behave the way doctors expected.

Pain that changed with gravity. Pressure that eased only when lying flat. A nervous system that felt unstable in ways that were difficult to explain.

Those experiences lived in the body long before they appeared on scans or imaging reports.

Symptoms are often treated as subjective. They belong to the person experiencing them. They require interpretation. But sometimes the body is simply reporting physics that medicine has not yet learned to measure clearly.

Eventually, the tests caught up.

The imaging finally showed what my body had been trying to explain all along. And when those moments have come recently, it brings both relief and reflection.

Relief that the system can finally see what was happening. Reflection on how long the body carried that truth alone.

Moving Forward With a Different Kind of Purpose

Living with changes to the spinal fluid system forces a person to rethink many things about the future.

The question is no longer simply, What can I push through? Instead it becomes something more thoughtful:

How can I protect the system that protects my brain?

Some activities may never feel the same again. Sudden movements, high-impact sports, or extreme acceleration may always carry a level of risk that did not exist before.

That reality brings grief. But it also brings clarity.

Because once the body has shown you its limits, you begin to understand how precious stability really is.

A Mother’s Perspective

As a mother, the future now looks different than I once imagined.

My goal is no longer to prove how much I can push through physically. My goal is to protect the health I still have so I can be present for the people who matter most.

Every day I am determined to strive for the best health possible. not only for myself, but for the family who walks through this journey beside me.

Strength now means pacing. Strength means listening. Strength means building a life that respects the limits of the nervous system instead of ignoring them.

The Meaning of Quality of Life

Medicine often focuses on diagnoses and procedures. But patients live inside something much larger than that. They live inside the question of quality of life.

Quality of life means more than simply surviving a condition. It means finding ways to continue participating in the world.

It means protecting moments of joy. It means building routines, relationships, and purpose around the realities of the body rather than constantly fighting against them.

Quality of life asks a different kind of question: How do we live well within the body we have now?

As a person who has to lie flat 20-23 hours per day currently, I am trying to figure out a better quality of life.

The Ocean is Still There

Learning about the dura mater and the cerebrospinal fluid system changed the way I see the human body. Inside each of us is a delicate ocean protecting the brain and spinal cord. The dura holds that ocean in place.

Sometimes the system becomes fragile. Sometimes it requires repair. Sometimes it forces us to rethink how we move through the world. But the system is still remarkable. The nervous system is still capable of adaptation.

Even when the body changes, purpose and meaning can continue to grow in new directions. And every day forward is an opportunity to learn how to live more gently within that ocean.

I used to think of anatomy as something fixed. It was something you learn, label, and move on from. Now I understand it differently.

The dura is not just a structure. The cerebrospinal fluid is not just a concept. These are systems I have had to live within, navigate, and learn from in ways I never expected. What once felt invisible now has form, and what once felt confusing now carries meaning.

This piece is not just about anatomy.
It is about learning to trust the body again — even after everything.

Researching and Further Reading

Much of our current understanding of the dura mater and cerebrospinal fluid system comes from foundational neuroanatomy texts and evolving research in spinal CSF dynamics. For readers interested in learning more, helpful resources include Gray’s Anatomy, Netter’s Atlas of Human Anatomy, and clinical reviews on cerebrospinal fluid physiology and spinal meningeal disorders. Research into CSF venous fistulas, perineural (Tarlov) cysts, and connective tissue-related dural changes continues to grow as these conditions become better recognized.

Health Disclaimer

This space reflects my personal experience as both a nurse and a patient, along with general medical information. It is not a substitute for professional medical advice, diagnosis, or treatment. Please speak with your own healthcare provider about your individual situation.

In the sky
our family becomes letters
watching from a distance.
Below
the world burns red
loud and chaotic
like a battlefield.
Good and evil
do not look the way we expect.
Sometimes they look like noise,
pain,
and survival.
And somewhere in the middle
a stubborn light
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Four letters hidden in the sky for the people who hold my world together.

Below them, a landscape that feels almost hellish.

A reminder that even when life feels like a battlefield, love still watches from above.

In a song of hope,

MJ

About a year into trying to understand the pain in my spine after I was in a serious motor vehicle accident, I was seeing both a neurosurgeon and a pain management doctor. At that point I had already begun researching Tarlov cyst disease and cerebrospinal fluid leaks. I knew enough to understand that certain procedures commonly used for back pain can be risky for patients with fragile dura or perineural cysts.

Because of that, I had been clear from the beginning that I did not want injections into my spine.

The neurosurgeon in the office suggested something that sounded more reasonable. An SI joint injection on the right side. The purpose was simply diagnostic. If the sacroiliac joint responded to the injection, it might explain the pain. If it did not, we could continue investigating other causes before moving forward with more invasive testing like a myelogram.

That seemed fair.

So I drove myself to the appointment.

I remember signing the consent form quickly. I was nervous, but I believed we were doing the procedure we had discussed. I planned to go through it without sedation or pain medication, just breathing and getting through it.

When I walked into the procedure room, the music was blaring. Loud music filled with explicit lyrics. I was trying to calm myself and focus on breathing, but it was impossible to concentrate. Eventually I asked the nurse to turn it off.

Then the procedure began.

It was image guided. As the needle was placed, I felt something I had never felt before. A sharp electrical sensation shot down my leg. A sudden zing through the sciatic nerve that made my whole body tense.

Then my right leg became weak.

Not numb exactly. Just weak. As if the strength had drained out of it.

I had driven myself there, so I had to drive home. But I remember sitting in the parking lot for a long time first because my leg did not feel stable enough to leave right away.

Over the next several hours the pain began to escalate.

And it kept escalating.

Within days the pain had become so intense that I would go on the back deck at all times of the night, stare off into the woods in the back of our house in the middle of the night, screaming in my head from the pain, but crying quietly outside. I kept replaying the procedure in my mind and asking myself the same question.

What just happened? How could I feel this terrible after an SI joint injection?

When I contacted the office about the worsening pain, they told me to go to the emergency room. That something else must be wrong. That a procedure like this would not cause that much pain.

Sketchbook Reflection

I created this page during a time when I was trying to make sense of what my body was going through. The quote by Carl Jung stopped me when I first read it: “There is no coming to consciousness without pain.”

At the time, I did not yet have answers for what was happening in my spine. I only knew that something was wrong, and that becoming aware of it meant confronting a reality that others were not yet seeing.

Looking back now, this page feels like a quiet marker in the middle of that journey. Awareness can be painful, but it is also the beginning of understanding, and sometimes the beginning of reclaiming your voice. This sketch was drawn during this time.

When Pain Is Dismissed

The days after that injection were some of the most frightening of my medical journey. The pain was escalating rapidly, and I could feel that something in my body was not reacting normally.

Eventually I went to the emergency room, hoping someone would at least evaluate whether the injection had caused damage.

By that point I had discovered that the only position that brought temporary relief was squatting. It sounds strange, but it allowed a small release of pressure in my back. I could briefly reduce the pain that way.

The physician assistant who evaluated me focused on that moment.

Because I was able to squat down and lift my backpack, he questioned whether I could really be experiencing severe back pain. I tried to explain that the pain had dramatically worsened immediately after the injection and that something felt very wrong.

Instead of focusing on the new symptoms, the conversation shifted in another direction.

He told me he had “looked me up” and asked why I had been “upstairs” before. When he gestured toward the upper floors of the hospital and asked what he meant, he repeated himself slowly and gestured something strange with his hands and eyebrows. I realized he was implying psychiatric treatment that I had.

The problem was that I had never been admitted to that hospital.

The only time I had ever been in that building was as a nursing student completing clinical rotations during COVID.

In that moment it became clear that my concerns were being filtered through a different lens. Not a neurological one. A psychological one.

I had come seeking evaluation after a spinal procedure that had caused sudden and escalating pain. What I encountered instead was suspicion.

When I asked if imaging could be done to make sure nothing had gone wrong with my spine, the request was brushed aside. Instead, I was offered another injection.

After what had just happened to my body, I declined.

And then I walked out.

Later I reported the interaction through the hospital’s patient advocacy channels because the bias was so clear. I explained exactly what had happened and how my concerns had been dismissed. I was told it would be reviewed.

Nothing ever came of it.

There was no follow up. No explanation. No acknowledgement. I called three separate times. I wrote a letter. And still, there was never any follow up of any kind.

Looking back now, the pattern is painfully obvious.

First there was the physical violation of consent with the unexpected spinal injection.

Then there was the medical dismissal that followed, where escalating pain was interpreted through the lens of mental health history rather than investigated as a possible complication.

When patients carry psychiatric diagnoses in their charts, it can quietly change how their physical symptoms are interpreted. Even when those symptoms are new, sudden, and medically significant.

For me, that moment became one of the clearest examples of how easily real neurological suffering can be minimized when bias enters the room.

Ten days later I returned to the pain management office for a follow up.

The medical assistant looked at my chart and asked if I was there regarding my L4 L5 transforaminal steroid injection.

I told her no. I had come in for an SI joint injection.

She looked back at the chart again.

“No,” she said. “It says you had an L4 L5 transforaminal injection.”

When the physician came into the room, I asked him about it directly.

He confirmed that he had changed the procedure.

He said he did not believe the SI joint was the source of the pain, so he had performed the spinal injection instead.

I remember sitting there stunned.

That was the procedure I had specifically said I did not want.

At that point I did not yet have confirmation of the extent of the perineural cysts throughout my spine. I also did not yet know about the CSF venous fistula that would eventually be discovered at T7 and T8.

But I already knew that injections into the spine were something I had tried to avoid.

When I asked if the injection could have irritated a nerve root or a cyst, the concern was brushed aside.

“It’s not that big of a deal.”

But my body was telling a very different story.

I went home that day and sobbed to my husband.

“They injected my spine,” I told him. “I told them not to.”

That moment marked the beginning of a dramatic escalation in my neurological pain. Everything became worse. The sacral pain intensified. The nerve pain became more volatile. My sense of safety within medical procedures disappeared.

To make matters even more difficult, when I returned to the neurosurgeon who had originally suggested the SI joint test, he told me he could not move forward with treatment until an SI joint injection had been attempted.

The same injection I had originally agreed to.

But by that point I could not continue care within that system. I no longer trusted that the procedure discussed with me would be the procedure performed.

So I left and started over somewhere else.

Years later I now have confirmation of a CSF venous fistula and perineural cysts throughout my spine. I have undergone myelograms and continue navigating the long recovery from procedures that most people will never need to think about.

People sometimes wonder why patients with complex spinal conditions approach procedures with caution, fear, or hesitation.

This is why.

Sometimes the moment that changes everything begins with what was supposed to be a simple test.

When Consent Is Broken

There is another layer to experiences like this that is rarely discussed in medical spaces.

When a procedure is performed that a patient did not believe they had agreed to, the physical pain is only part of the impact. What lingers much longer is the psychological rupture that occurs when trust is broken in a vulnerable moment.

Medical procedures require surrender. A patient lies still while someone else approaches the most fragile parts of their body. They trust that the plan discussed beforehand is the plan that will be followed. That trust is not a small thing. It is the foundation that makes medical care possible.

When that boundary is crossed, something deeper than the body is affected.

For many patients, medical trauma does not begin in the hospital. It intersects with earlier experiences of powerlessness that shaped how safety and control were learned in the first place. When a person has already lived through moments in life where control was taken away from them, even subtle violations of consent in medical settings can reopen that psychological wound.

The body remembers what it feels like to lose control.

That moment in the procedure room did not just create pain in my spine. It created a feeling that the rules of safety had quietly changed without my knowledge. The plan had shifted while I was lying on the table, trusting that the conversation we had beforehand still mattered.

For someone who has spent years learning how to rebuild a sense of autonomy and personal boundaries, that experience can be deeply destabilizing.

Medical trauma is more common than most people realize. Research increasingly shows that patients who experience unexpected procedures, dismissive responses to pain, or violations of consent often carry long lasting psychological effects. Anxiety around future care. Hypervigilance during procedures. Difficulty trusting physicians even when they are trying to help.

What happened that day changed how I approach medicine.

But it also forced something important to grow.

For most of my life I tried to be the cooperative patient. The agreeable one. The person who trusted that the professionals knew best and that my role was simply to endure whatever was necessary to find answers.

That approach no longer works for me.

Living through experiences like this has required me to develop something stronger than cooperation. It has required boundaries.

Clear questions. Written documentation. Slower consent. The willingness to stop care when trust is broken. The courage to leave institutions where my voice is not respected.

Those boundaries were not something I naturally carried before this journey. They are something that had to be built through painful experience.

And in time, the medical picture around my spine became clearer.

Years later imaging would confirm what my body had been trying to communicate all along. A cerebrospinal fluid venous fistula in my thoracic spine. Perineural cysts throughout my spine. Fragile nerve root structures that can react intensely to procedures that are routine for most patients.

Knowing that now reframes that moment in the procedure room.

The concerns I had about spinal injections were not irrational fears. They were early instincts about a structural problem that had not yet been fully discovered.

Ironically, the same experience that created one of the most violating chapters of my medical journey also became a turning point in how I advocate for myself.

I still believe deeply in medicine. I have met extraordinary physicians who listen, who collaborate, and who treat patients as partners in the process of healing.

But trust must be mutual.

Consent must be real.

And when patients say that certain procedures feel unsafe for their bodies, that concern deserves to be taken seriously.

Especially when the patient has already lived through enough moments of powerlessness to know exactly what that feeling means.

Sketchbook Reflection

This drawing was inspired by an image I originally saw on Pinterest. The concept is not my own, but the interpretation and meaning behind it became personal as I sketched it. It lives in my sketchbook among many quiet drawings from a time when I was trying to understand what was happening inside my body.

During that period of my medical journey, my mind and heart often felt like they were being pulled in different directions. I was searching for answers while also trying to emotionally survive the uncertainty, the pain, and the medical experiences that often left me feeling powerless. Drawing became one way to process those feelings.

At the time I created this sketch, I did not yet have confirmation of the structural problems in my spine that would eventually be discovered. Later imaging would reveal a cerebrospinal fluid venous fistula and perineural cysts throughout my spine, helping explain why my brain, body, and emotions had felt so unsettled for so long.

Looking back at this piece now, I see it as a snapshot of that moment in time. A reminder of how deeply the experience of illness can affect both the brain that tries to make sense of it and the heart that carries its emotional weight.

Over time, my understanding shifted. What once felt like invisible strings of control began to look more like the quiet presence of something steady guiding me through the chaos. I titled it, “God is the Ultimate Puppeteer.”

Moving Forward

Even now, I am still processing the psychological impact of those experiences.

Medical trauma does not disappear the moment a diagnosis is finally found. The body remembers what it felt like to be dismissed, misunderstood, or treated as though its pain was imaginary. When those experiences intersect with mental health history, the effect can be even more destabilizing. The very support systems meant to help a person heal can sometimes become the lens through which their physical suffering is minimized.

In the years since these events, I have often revisited the evidence I kept during that time. Videos recorded in the middle of the night when the pain was escalating. Photos documenting changes in my body that I did not yet have words for. Notes, timelines, and medical records that helped me track what was happening when no one else seemed to see the pattern.

At the time, those recordings were simply acts of survival. I needed proof that what I was experiencing was real.

Looking back now, they have become something else. Documentation. A record of a body trying to communicate what medicine had not yet understood.

Those files tell the story of a patient navigating pain, fear, and uncertainty while trying to advocate for herself in systems that were not always prepared to listen.

And this story is only one chapter.

It represents just a few moments within a three-year journey of searching for answers, enduring procedures, confronting bias, and slowly learning how to rebuild trust in my own voice.

My hope in sharing it is not to assign blame. It is to invite reflection.

Patients with complex or rare conditions often arrive in medical spaces carrying layers of history. Physical pain. Emotional exhaustion. Sometimes psychiatric care that was meant to support them but instead becomes a label that shapes how their bodies are interpreted.

What we need from medicine is not perfection. We need curiosity. Careful listening. And a willingness to investigate when a patient says something has changed in their body.

Because sometimes the story a patient is telling is not a psychological one.

Sometimes it is a neurological one that simply has not been discovered yet.

And sometimes the difference between dismissal and discovery begins with the decision to take that story seriously.

Where Things Stand Now

Today, the picture of my spine looks very different than it did during those early years when I was searching for answers.

Imaging has now confirmed that I have diffuse perineural cysts throughout my spine, along with dural ectasia affecting the sacral region of the spinal cord. I underwent Tarlov cyst surgery to address cysts at S2, S3, S4, and S5, and during that procedure the sacral dural ectasia was also treated as part of the repair.

There is also a longstanding injury in my cervical spine that continues to be evaluated.

More recently, physicians identified a cerebrospinal fluid venous fistula, a rare type of spinal CSF leak that can cause profound neurological symptoms when spinal fluid drains where it should not. That discovery has helped explain many of the symptoms that once seemed disconnected and mysterious.

For the first time in this journey, the pieces of the puzzle are beginning to align.

I now have an upcoming procedure intended to seal that leak. My hope is simple. If the procedure is successful, it may allow my brain and spine to stabilize enough that I can remain upright longer, regain some strength, and slowly return to the creative work and advocacy that have carried me through this experience.

I do not expect everything to return to the way it was before. But I do hope for more time in the world outside of bed. More time with my family. More time creating. More time helping others navigate the kinds of medical systems that so many patients struggle to be heard within.

Because if this journey has taught me anything, it is that stories like mine are not rare.

And the future of patient care will depend on how willing we are to listen to them.

I am hopeful that this next procedure will allow my body a little more stability and a little more time upright in the world. Enough time to create, to advocate, and to help make sure that patients who come after me are listened to sooner than I was.

A Kinder Rewrite for the Doctors Who Care for Patients Like Me

I know that medicine is not easy.

Emergency rooms are busy. Pain is difficult to measure. And when a patient arrives with complex symptoms, incomplete answers, and a long history of medical notes, it can be hard to know where to begin.

I also understand that mental health histories appear in charts for good reasons. Many patients need that care and deserve it.

But I hope my story offers a gentle reminder of something important.

When a patient says that something has suddenly changed in their body, especially after a procedure, that moment deserves curiosity.

Not every unusual symptom is psychological.
Not every anxious patient is exaggerating.
And not every complex story is a sign of instability.

Sometimes it is simply a person whose body is trying to explain something that medicine has not yet discovered.

In my case, years later, imaging would show diffuse perineural cysts throughout my spine, sacral disease that required surgery, dural ectasia that had to be repaired, and a cerebrospinal fluid venous fistula that had been quietly altering my neurological function.

The story my body was telling was real. It just took time for the evidence to catch up.

Patients do not expect physicians to have every answer immediately. What we hope for is something simpler.

Careful listening.
Clear communication and documentation.
And the reassurance that when we say something feels wrong, that concern will be taken seriously.

Those small moments of curiosity can change the entire trajectory of a patient’s journey.

Because sometimes the difference between dismissal and discovery begins with a doctor who pauses long enough to ask one more question.

If sharing this story helps even one patient be heard a little sooner, or one physician pause long enough to listen more closely, then the pain that shaped it will not have been carried in vain.

It is a colored pencil piece, which means nothing about it happened accidentally. Colored pencil does not run unless you press it to. The blue and purple were layered deliberately, built slowly, pressed downward until they felt heavy enough to carry something real. I drew the melt before I redrew the structure.

At the time I shaded those colors, I believed I was illustrating the only language people around me seemed willing to hold. Blue and purple meant mental health awareness. Suicide prevention. Depression. Anxiety. Those were the conversations that surfaced most easily in rooms where I was trying to explain neurological instability I did not yet have proof for. Those were the explanations people understood.

I thought the drips represented what others were seeing.

I did not realize that blue is also the color used for cerebrospinal fluid leak awareness. I did not realize that purple is widely associated with rare disease advocacy. I was shading what felt visible, and unknowingly shading what was structurally true.

There is something almost funny about that now. The colors knew before I did.

For more than three years after a major highway collision, my symptoms escalated in ways that did not fit neatly into one category. Eventually I was diagnosed with symptomatic Tarlov cyst disease. Perineural cysts were documented along my spine. The severity of sacral involvement was confirmed during surgery in June 2025. Later imaging identified a thoracic cerebrospinal fluid venous fistula. There is now a plan to address it.

These are not common diagnoses. Most neurosurgeons do not operate on symptomatic Tarlov cysts. Expertise is concentrated in limited centers. Many patients travel across state lines seeking evaluation. I traveled almost 3000 miles away for the surgery I had to address the sacral region in June 2025. Rare disease does not mean nonexistent. It means uncommon enough that confirmation often takes time.

Before the structure was acknowledged, the narrative frequently defaulted to psychology. I could feel the subtle shift when I entered appointments. My psychiatric history arrived before I did. Depression. Anxiety. Longstanding therapy. Medication management. None of those things were untrue. But they were not the whole truth.

Living in that space, where intact bones are interpreted as intact systems, creates a peculiar dissonance. Herniated discs can be present without urgency. Nerve instability can exist without dramatic imaging. Cerebrospinal fluid dynamics can be abnormal without visible fracture. Rare disease often lives between visible catastrophe and invisible dysfunction.

When structural illness coexists with documented mental health history, nuance is required. Sometimes nuance is slow.

I am not interested in accusation. I am interested in integration.

Chronic neurological instability affects sleep. Sleep disruption affects mood regulation. Persistent uncertainty taxes the nervous system. Research consistently shows that individuals living with complex or rare medical conditions experience higher rates of anxiety and depressive symptoms. That is not weakness. It is physiology. It is adaptation to prolonged stress.

At the same time, it is possible for psychiatric framing to shape interpretation. That does not mean mental health care is invalid. It means human cognition is influenced by context. Once a narrative forms, it carries forward.

There were moments when I began to question myself. Not because I lacked insight, but because humans are relational. When authority speaks with certainty, it reverberates. When your lived experience feels outpaced by documentation, you start to wonder where the fault line truly is.

Art became the place where I did not have to negotiate that tension.

There was a season when I could not sit upright for long without symptoms escalating. My bed became my studio. Sketchbooks rested on blankets. Colored pencils stayed within reach. I learned how to shade at angles that did not aggravate my spine. I learned patience in smaller increments.

Art did not repair my nervous system. It did not close a CSF leak. It did not remove perineural cysts. But it regulated me. Repetitive hand movement calms the limbic system. Pattern building engages cortical focus. Layering pigment requires intention. You cannot rush colored pencil. It resists urgency.

In a body that felt unstable, art gave me rhythm.

When I left the center of the ribbon blank in 2024, I told myself I would eventually fill it in correctly. I did not know what correctly meant yet. I only knew the story felt incomplete.

This week I drew a zebra.

Rare disease communities use the zebra as a symbol because medical training encourages providers to think horses before zebras. That principle protects patients most of the time. But sometimes the hoofbeats really are a zebra. Sometimes uncommon is simply uncommon.

Drawing the zebra did not feel like vindication. It felt like recognition. A quiet acknowledgment that structural confirmation changes the tone of the conversation inside your own body.

Finishing the ribbon now does not feel explosive. It feels settled.

There was anger in the earlier layers. I would be dishonest if I denied that. The anger came from years of trying to translate myself, trying to explain why positional headaches were not simply anxiety, why neurological instability did not resolve with reassurance, why something felt mechanically wrong.

I do not feel that same urgency anymore.

Not because everything is perfect. Not because every system flaw has been corrected. But because there is structure now. There are images. There are surgical notes. There is a plan. There is a zebra.

The blue and purple drips remain. Mental health awareness remains. Suicide prevention remains urgent in rare disease communities. Living with prolonged uncertainty takes a psychological toll. That is real and deserves attention without stigma.

But the blank space is no longer blank.

It has context. It has architecture. It has integration.

On the back of the sketchbook page I wrote that the truth is found under the stigma. I wrote that I always knew something structural was causing my symptoms. I wrote in honor of CSF leak warriors, Tarlov cyst warriors, EDS warriors, and others navigating rare disease. I wrote about the need for systems that understand whole bodies rather than fragmented parts.

Finishing the ribbon feels less like proving something and more like closing a loop.

Rare disease is not rare to the families living it. Mental health is not separate from structural illness. When awareness is paired with research, humility, and compassion, it becomes more than a symbol. It becomes coherence.

The colors were there before I understood them.

Now they make sense.

For a long time, I was describing what I felt. A pressure in my head that did not behave like a migraine. A cognitive slowing that felt foreign to me. Words that would stall halfway through a sentence. Vision that kept changing even when I updated my prescription. A sense that something inside my skull was not stable, not anchored the way it used to be.

I was talking about symptoms.

Visions of Tomorrow-MJ Felt February 2026

This painting holds the feeling of hope returning slowly after a long medical storm. The soft blues and rising light represent the moment when clarity begins to replace confusion, and warmth pushes back against fear. It is not loud optimism — it is gradual sunrise. This is what it feels like to believe in a future again, even while still healing.

Symptoms are subjective. They live in the body of the person describing them. They require interpretation. They are easy to question. There is a particular kind of loneliness that comes from describing something that cannot yet be seen.

What changed the tone of my care was not my description. It was my imaging.

Before Tarlov Cyst surgery, my MRI carried a Bern score of 5. The Bern score is a radiologic system used to quantify imaging features associated with spontaneous intracranial hypotension, or chronically low cerebrospinal fluid volume. After surgery, that score dropped to 2. That shift was measurable.

At one point there was a subdural hematoma. That is documented. Over time, my pituitary measurements changed. That is documented. My vision shifted from minus 5 to minus 7. I now wear plus 2.5 progressive lenses. I have cataracts. That is documented.

What is not documented is a definitive statement that ties all of those changes together.

No one has said, this happened because of your CSF leak.

And I am not claiming that.

What I can say is that these changes were not present immediately after my accident. They appeared over time. They overlap with a prolonged period of low CSF physiology. I live in that overlap.

That space is complicated. It is emotional without being dramatic. It is uncertain without being imaginary.

When I started reading the medical literature, I was not trying to prove anything. I was trying to understand whether what I was living was even possible.

What I found was not certainty. It was plausibility.

Review articles on spontaneous intracranial hypotension describe how chronic low CSF volume can alter brain mechanics. They use the phrase brain sagging. They describe venous engorgement, subdural fluid collections, traction on pain-sensitive structures, and sometimes pituitary enlargement due to pressure shifts. They describe cognitive slowing and behavioral changes that can mimic psychiatric or degenerative disease. In rare but documented cases, patients were initially thought to have frontotemporal dementia before a spinal leak was identified and treated.

Those papers do not say this is exactly what happened to me. I understand that. But they do say that chronic low CSF can change how the brain sits and functions.

They say that subdural hematomas can occur in prolonged intracranial hypotension because stretched veins are more vulnerable.

They say that early recognition matters because chronic leaks are harder to manage.

That last sentence was echoed by my neurosurgeon. Chronic leaks are more complex than early ones. Not because anyone failed. Not because anyone was negligent. Because biology accumulates time.

The procedure I am preparing for is a transvenous embolization for a suspected CSF venous fistula. A CSF venous fistula is an abnormal connection where spinal fluid drains directly into a vein. These fistulas can be difficult to detect because they often do not produce obvious epidural fluid collections. They may require specialized imaging techniques that have only become widely recognized in the last several years.

At this major academic medical center, formal recognition and treatment of CSF venous fistulas has existed for approximately five years. My surgeon has performed this procedure around thirty times. That number reflects how new this field is. It does not frighten me. It tells me that medicine is still learning to see something that has likely been present for a long time.

When you bring up something that lives in emerging literature, you may be met with skepticism. Sometimes a smile. Sometimes a soft laugh. Sometimes the word rare.

Rare does not mean unreal.

Rarity Does Not Mean Unreal-MJ Felt. February 2026

This piece is my reminder that uncommon does not mean imaginary. For years, my symptoms were minimized because they were rare, complex, and hard to categorize. The gray tones represent that fog of dismissal, while the scattered light and color marks show truth breaking through anyway. This is what it feels like to reclaim reality after being told your experience is too unusual to be real.

One of the most destabilizing realizations for me was that it was not my symptoms that shifted the system. It was the imaging. It was the Bern score. It was the structural findings.

That is emotionally complex. Because the symptoms came first.

The reading I have done has not made me certain. It has made me careful. It has taught me that structural physiology can sometimes look psychiatric. That cognitive symptoms can be secondary to mechanical changes. That some of those symptoms improve when the underlying leak is treated. That vision changes, pituitary changes, and subdural findings live within the same intracranial ecosystem, even if causation is not always neatly assigned.

I do not know exactly which of my changes are directly attributable to a CSF leak. I do know that my brain imaging evolved over time. I know that my vision changed permanently. I know that my symptoms were present before the imaging made them visible.

And I know what it feels like to live in the gap between lived experience and radiologic proof.

A Kinder Rewrite to Myself

Original thought:
If my imaging had changed earlier, maybe I would have been taken seriously sooner.

Kinder rewrite:
Medicine often needs visible evidence before it shifts direction. That does not mean my early symptoms were invalid. It means physiology sometimes reveals itself slowly.

Original thought:
They should have known.

Kinder rewrite:
CSF venous fistulas have only been widely recognized in the last several years. The field is still evolving. I was living in that evolution.

Original thought:
I was dismissed.

Kinder rewrite:
My symptoms required time, imaging, and persistence to be fully understood. That journey was painful, but it does not erase the reality of what my body was doing.

If You Are Reading This Because You Are Struggling

If you have never heard of a CSF leak and are just beginning to suspect something is not right, you are not alone. If your imaging is normal but your symptoms are not, you are not foolish for asking questions. If you have been told it is stress and you are still searching, you are not dramatic for reading.

Chronic low CSF is not just a headache in some patients. It can affect brain mechanics. It can affect veins. It can affect cognition. It can create subdural collections. It can coexist with other conditions and complicate the picture.

Not every symptom is a leak. Not every leak causes every complication. But the literature makes clear that prolonged low CSF physiology is not benign.

If you want to read what I read, start here:

• Multidisciplinary consensus guidelines on spontaneous intracranial hypotension
• Review articles on brain sagging dementia and reversible cognitive syndromes related to CSF leaks
• Outcome studies on transvenous embolization for CSF venous fistulas
• Literature on superficial siderosis in persistent spinal leaks
• Imaging criteria and Bern scoring systems for intracranial hypotension

This is not an academic argument. It is a lived one.

My story is still unfolding. My procedure is still ahead of me. My vision changes are permanent. Some brain findings improved. Some questions remain unanswered.

What I know for certain is this: I was not imagining the shift. Even when the imaging had not yet caught up.

And sometimes, that is where advocacy begins. When people say “CSF leak effects on the brain,” the research is mostly talking about chronic low CSF volume or pressure (often discussed under spontaneous intracranial hypotension, SIH). Over time, that can change brain position, venous blood volume, and the layers around the brain. Here are the best-supported long-term brain effects that show up in the medical literature.

The Big Research Themes

What the literature consistently supports:

• Chronic low CSF volume alters brain mechanics
• Cognitive and behavioral symptoms can be secondary to structural change
• Some “psychiatric-appearing” symptoms are physiologic
• Many changes improve with appropriate treatment
• Persistent untreated leaks can carry progressive neurologic risk

What long-term CSF leaks can do to the brain

Chronic cerebrospinal fluid leaks do more than cause headaches. When CSF volume stays low over time, the brain’s mechanics and blood flow dynamics shift. Research over the last decade has clarified several important long-term effects. When people talk about “CSF leak effects on the brain,” the research is usually referring to chronic low cerebrospinal fluid volume, most often discussed under spontaneous intracranial hypotension. Over time, low CSF can alter how the brain sits in the skull, how blood volume compensates, and how surrounding structures respond.

The literature describes several long-term patterns.

First, brain sagging and traction on pain-sensitive structures. When CSF volume remains low, the brain can sit slightly lower than normal. This may stretch pain-sensitive tissues and cranial nerves. Imaging reviews consistently describe patterns of brain sagging along with compensatory venous changes.

Second, subdural fluid collections and hematomas. Prolonged intracranial hypotension can stretch bridging veins, making subdural collections more likely. This is a recognized complication in spontaneous intracranial hypotension discussions and one reason worsening symptoms are taken seriously.

Third, cognitive and behavioral changes that can look psychiatric. Chronic low CSF physiology can produce brain fog, attention and memory problems, and in rare cases behavioral syndromes that resemble primary neurodegenerative disease. Some recent studies describe mild cognitive impairment in patients prior to leak repair, with improvement afterward. The term brain sagging dementia has even been used in review literature to describe a potentially reversible dementia-like presentation linked to intracranial hypotension.

Fourth, venous congestion patterns. Because the skull is a fixed space, when CSF volume drops the body may compensate by increasing blood volume in the head. Imaging may show venous engorgement. Clinically, this can contribute to pressure sensations and complex symptom patterns.

Fifth, long-term complications in persistent spinal leaks. A subset of patients with chronic ventral leaks can develop superficial siderosis, a progressive neurologic condition caused by iron deposition from chronic bleeding into CSF spaces. Case literature emphasizes early treatment to reduce the risk of long-term neurologic decline.

Finally, course variability matters. Even after treatment, some patients experience relapse years later, while others may develop rebound intracranial hypertension after leak closure. These are part of the long-term landscape specialists monitor.

The larger themes across the literature are consistent:

Chronic low CSF alters brain mechanics.
Cognitive and mood symptoms can be secondary to structural physiology.
Some frightening cognitive presentations are reversible when the leak is treated.
Persistent untreated leaks may carry preventable long-term neurologic risks.

This is not abstract to me.

My procedure, which is less than a month away, is a transvenous embolization for a suspected CSF venous fistula, and it sits inside that evolving research. Larger outcome studies in recent years have shown significant improvement in imaging and quality of life after embolization in appropriately selected patients. These procedures were not widely recognized even a decade ago. They are part of medicine learning to see more clearly.

That does not mean every symptom is explained. It does not mean every outcome is guaranteed.

It means the gray space is not imaginary.

It is where lived experience and emerging science overlap.

And that is where many of us are still advocating.

If you’ve never heard of one, here’s the simplest explanation.

A spinal CSF leak happens when the protective fluid that cushions the brain and spinal cord escapes through a tear or weakness in the dura. When that fluid drops, the brain can literally sag downward. The hallmark symptom? Severe positional head pain; worse upright, better lying flat. Nausea. Neck pain. Cognitive changes. Weakness. Autonomic chaos.

It is not subtle.

And yet for three years, I was told:

• It’s psychological.

• It’s stress.

• It’s trauma.

• It’s somatic.

• You’re focusing on it too much.

• Your imaging is “fine.”

• Tarlov cysts don’t cause symptoms.

• Perineural cysts are incidental.

• There’s no evidence of a leak.

Except there was.

A Tarlov cyst neurosurgeon documented concern in my medical charts over a year ago.

I had textbook positional symptoms.

I had a significant neck injury after a highway collision with a semi; never documented.

I even had surgery on the sacral Tarlov (perineural) cysts in June 2025. Surgical findings during the operation were much worse than radiological imaging had identified. Recent imaging showed perineural cysts throughout my spine. Every level - both sides.

But once something enters your chart as psychological, it stains everything.

Every complaint is filtered through it. Every tear confirms it.

Every plea for pain relief, symptom management, and even neurological decline, was blamed on it.

I was eventually admitted to a psychiatric unit after 2 years of being denied adequate care and medical gaslighting, because unmanaged pain, severe lack of sleep, plus medical dismissal will break anyone.

Anyway, that part is harder to talk about.

There is something uniquely destabilizing about being in real physical pain while authority figures laugh, minimize, or suggest it is fabricated. It forces you to question your own reality. It fractures your internal compass.

That is not therapy. That is not healing. That is psychological torture.

And here’s the complicated part:

Now that the leak is being taken seriously, I am not relieved. I have an upcoming surgical procedure, and I am in writhing pain.

I had two invasive spinal procedures last week. My sacrum feels like it is on fire. My head pain rarely drops below an eight. I still cannot stay upright long. But even if relief ever comes, it doesn’t change the medical story.

• Relief does not erase three years of erosion.

• Relief does not restore lost trust.

• Relief does not give back the identity that was dismantled.

And yes — I am angry.

Angry that documented structural disease was dismissed. Angry that the reality of my symptoms were brushed off as inconvenient or too complex to be “real.”

Angry that dozens of medications were layered on instead of asking better questions, and that my kidney levels are functioning at an all time low. (And I won’t even discuss the impact it has had on my cardiac health, which is now being closely monitored.)

Angry that pain was treated as pathology of character instead of pathology of dura.

Anger, in this case, is not bitterness.

It is clarity.

There is a difference between mental health conditions and structural neurological disease. And conflating the two does real harm — especially to women, especially to patients with prior psychiatric history, especially to those who are articulate and emotional.

• We deserve differential diagnosis, not default psych referral.

• We deserve imaging review, not eye rolls.

• We deserve collaboration, not condescension.

• And most of all — we deserve to not have our reality rewritten in our own charts.

If you are in the middle of this — doubting yourself, being told it’s “just stress,” watching your symptoms worsen when upright — I want you to know:

• Your body is not hysterical.

• Your pain is not a personality flaw.

• Your persistence is not pathology.

• Sometimes anger is the nervous system reclaiming truth.

The Part No One Talks About

There’s another layer to this.

In order for the system to change, I still have to function inside it.

I still have to be the “good patient.”

Calm.
Reasonable.
Measured.
Not too emotional.
Not too desperate.
Not too informed.
Not too quiet.

Somewhere in the narrow lane between “hysterical” and “drug-seeking.”

And here’s the truth: I am in writhing pain right now.

The kind of pain that makes you nauseated.
The kind that steals sleep.
The kind that makes your body tremble when you try to stand.

But I hesitate to ask for more relief. And honestly, the neurologic flare in the post surgical area of my sacrum is the worst pain I have encountered in that area since surgery.

Because once your chart carries certain words — psychological, somatic, prior psychiatric admission — you are no longer just a patient in pain. You are a risk profile. You are scrutinized.

You measure your words.
You lower your voice.
You pre-explain that you don’t want narcotics, you just want to function.
You promise you won’t overuse.
You over-clarify.

You try to prove you are “safe.” It is exhausting to hurt and simultaneously manage how your pain is perceived.

And I hate that this experience taught me that.

I hate that I have learned how to soften my suffering so it won’t alarm anyone.
I hate that I’ve rehearsed how to ask for help without sounding like I need it too much.
I hate that I know exactly how addiction suspicion enters a room.

Kinder Rewrite: Structural vs Psychological

What I was told:
“It’s probably stress.”
“Your imaging looks fine.”
“You may be focusing on this too much.”
“With your psychiatric history, this could be somatic.”

What that sounds like underneath:
Your pain is not trustworthy.
Your body is exaggerating.
Your history makes you unreliable.

A Kinder Rewrite:
“It’s possible to have a psychiatric history and a structural neurological injury at the same time. One does not cancel the other. Let’s carefully rule out mechanical causes before we attribute this to stress.”

Why this matters:
Mental health conditions deserve thoughtful care.
Structural neurological disease deserves rigorous investigation.

When we confuse the two, patients don’t just suffer physically.
They begin to doubt themselves.

And self-doubt in the middle of neurological pain is destabilizing.

The goal isn’t to reject mental health.
The goal is diagnostic integrity.

Throughout the gaslighting and blatant documentation that revolves around mental health and women’s health bias and stigma, I have had to dig down deep and learn something even deeper than rewriting what I wish the medical professionals would have asked rather than assumed.

I’ve had to learn something else…

I have learned that being a decent patient does not mean erasing yourself.

It means staying steady even when you are shaking.
It means documenting carefully.
It means asking clearly.
It means advocating without burning everything down.

Right now, I am in the severe waiting period.

Waiting for procedures.
Waiting for healing.
Waiting to see what damage is reversible and what is not.
Waiting to learn what my new normal will be.

And that is the hardest part — the uncertainty.

Because I don’t know how much of this will resolve.

I don’t know how much permanent change my body will carry.

I don’t know what strength will look like six months from now.

But I do know this -having answers matters for sanity.

Even if being right didn’t protect me.
Even if it didn’t prevent damage.
Even if it didn’t spare my family the strain.

This has impacted them more than I can put into clean sentences.

My children have watched their mother lie flat in dark rooms.
They have learned the difference between “Mom’s headache” and “Mom can’t stand up.”
They have adjusted. Quietly. Bravely.

My husband has carried things I used to carry.
Schedules.
Noise.
Logistics.
The invisible labor of daily life.

Chronic illness does not just injure one body.
It reorganizes a household.

It changes tone.
It changes patience levels.
It changes finances.
It changes plans.

And I grieve that.

I grieve the years they had to watch me doubt myself.
I grieve the tension that dismissal created in our home.
I grieve the identity I lost in the middle of fighting to be believed.

But here’s the part I’m trying to hold onto, even while I’m angry:

This is still better than not knowing.

Truth, even painful truth, is stabilizing.

If there is long-term damage, I will face it honestly.
If there is healing ahead, I will meet it gratefully.
If my baseline changes, we will adapt as a family.

Anger is loud right now.

But underneath it, there is something quieter:

Relief that I was not imagining it.
Relief that my body was telling the truth.
Relief that my children will see that persistence matters.

In the long run, this path — the difficult, documented, evidence-based one — is better for my health and for my family.

Even if it took too long.

Even if it cost too much.

Right now I am still in excruciating pain.

But I am no longer in doubt.

And that, for today, is enough.

If you’re unfamiliar with spinal CSF leaks or Tarlov cyst disease, I encourage you to read before forming opinions. These are documented neurological conditions with established diagnostic criteria and treatment pathways.

For readers who want to understand the medical conditions I’ve discussed — including spinal CSF leaks, Tarlov cysts, and related structural neurological issues — here are reputable resources with clear explanations, clinical context, and diagnostic information:

If You Want to Learn More about Tarlov Cyst Disease

• National Institute of Neurological Disorders and Stroke – Tarlov Cysts
A reliable overview from a major U.S. neurological institute, explaining what Tarlov cysts are, how they form, and common symptoms.
https://www.ninds.nih.gov/health-information/disorders/tarlov-cysts?utm_source=chatgpt.com

• Cleveland Clinic – Tarlov Cyst: What It Is, Causes, Symptoms & Treatment
Patient-friendly medical information about Tarlov cysts, how they impact the spine and nervous system, and treatment considerations.
https://my.clevelandclinic.org/health/diseases/tarlov-cyst?utm_source=chatgpt.com

• American Association of Neurological Surgeons – Tarlov Cyst
Neurosurgical perspective on Tarlov cysts, including symptoms, diagnosis, and when surgical evaluation may be appropriate.
https://www.aans.org/patients/conditions-treatments/tarlov-cyst/?utm_source=chatgpt.com

• Tarlov Cyst Disease Foundation – Information & Resources
Patient-oriented explanations about perineural cysts, causes, symptoms, and support for those navigating diagnosis and care.
https://www.tarlovcystfoundation.org/info/?utm_source=chatgpt.com

• NCBI / StatPearls – Tarlov Cysts: Symptoms, Diagnosis & Management
Medical text summary covering clinical features, work-up and management strategies for Tarlov cysts.
https://www.ncbi.nlm.nih.gov/books/NBK582154/?utm_source=chatgpt.com

If You Want to Learn More About Spinal CSF Leaks

For clear, reputable medical information on spinal cerebrospinal fluid (CSF) leaks — how they happen, symptoms, diagnosis, and treatment — here are trusted resources:

• Mayo Clinic – CSF Leak (Overview & Symptoms)
A medical overview from a major clinical institution explaining what a CSF leak is, how it occurs, and the symptoms, including the characteristic positional headaches of spinal leaks.
https://www.mayoclinic.org/diseases-conditions/csf-leak/symptoms-causes/syc-20522246?utm_source=chatgpt.com

• Spinal CSF Leak Foundation – About Spinal CSF Leaks
A nonprofit resource devoted to spinal fluid leaks, including explanations of intracranial hypotension and how spinal CSF leaks affect brain and nervous system function. https://spinalcsfleak.org/?utm_source=chatgpt.com

• Cleveland Clinic – Cerebrospinal Fluid (CSF) Leak
Patient-focused overview from a major medical center on the causes and symptoms of CSF leaks, including spinal types.
https://my.clevelandclinic.org/health/diseases/16854-cerebrospinal-fluid-csf-leak?utm_source=chatgpt.com

• NCBI / StatPearls – CSF Leak Medical Summary
A clinical summary on CSF leaks, including how cerebrospinal fluid escapes through dural tears and why that causes symptoms such as headache and neurological changes.
https://www.ncbi.nlm.nih.gov/books/NBK538157/?utm_source=chatgpt.com

• Cedars-Sinai Health Library – CSF Leak Diagnosis & Treatment
Detailed explanation of how CSF leaks are diagnosed (including imaging tests) and treated, including conservative measures and procedures such as epidural blood patches.
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https://spinalcsfleak.org/2024-leavitt-physical-emotional-wellbeing/

Not right away.
Not rudely.
Often with genuine hope in their voice.

“When do you think you’ll be able to get back to softball?”

At first, I answered politely.
Then vaguely.
Then I stopped answering at all.

Because the truth was complicated.
And exhausting.

Because the question was never really just about softball.

It was about returning to form.
Returning to usefulness.
Returning to a version of me that didn’t require accommodation.

Softball was just the socially acceptable way to ask.

The truth was that I had hit a semi at highway speed.
That my head was turned when the airbag deployed.
That my neck didn’t just get “sore,” it was injured permanently.
That my body didn’t bounce back. It restructured itself around survival.

But there was another truth I didn’t know how to say out loud yet.

I already suspected softball wasn’t coming back and not because I hadn’t tried.

Two years ago, I picked up a bat. Carefully. Stubbornly. Hopefully. I did what I had always done before—trusted muscle memory, ignored fear, believed grit would carry me through.

I swung.

And I went straight to the ground.

Jolting pain shot down my entire spine, electric and unmistakable. Not soreness. Not strain. A full-body warning. The kind that doesn’t argue—it ends the conversation.

In that moment, my body told me something my mind didn’t want to hear.

Twisting wasn’t safe.
Lifting wasn’t safe.
Bending wasn’t safe.

Not now.
Maybe not ever.

Years later, imaging finally gave language to what my body had already been grieving.

Perineural cysts—also called Tarlov cysts—were found running along the entire right side of my spine. These are fluid-filled sacs that form along the nerve roots, often after trauma, when spinal fluid is forced into the nerve sheath itself. In some people, they remain quiet. In others, they multiply, press on nerves, and make ordinary movement dangerous.

They are poorly understood.
Often dismissed.
And rarely treated with urgency.

Now I am waiting for a myelogram of the left side of my spine. Waiting to see what else has been there all along. Waiting to learn how much of my body has been compensating without my consent.

That knowledge did not just interrupt a hobby.

It rearranged my sense of safety.

And it made the question “When will you be back?” feel almost surreal—because the ground beneath that question no longer existed.

What people could not see was that I had played through pain before.

Stress fractures.
Shattered fingertips.
A concussion so hard the laces were imprinted into the bruise.

Pain had never been the deciding factor.

This was different.

This was structural.
Neurological.
A nervous system saying if you keep going like this, you will lose more than a game.

So when people asked “When will you be able to play again?” my body heard something else.

So this is temporary, right?
There is a timeline, right?
You will push through like you always do, right?

I was not grieving softball.

I was grieving certainty.

I was grieving the version of my body that did not need to justify rest.
The version of me that could plan instead of calculate.
The version of my life that did not revolve around appointments, symptoms, and recovery windows that kept moving.

Somewhere along the way, the question picked up an undertone.

At least you survived.
At least it was not worse.
At least you will play again someday.

And while I am grateful to be alive—truly—that gratitude started to feel like a gag.

Because being grateful for survival does not mean I am not allowed to be angry about what it cost.

I did not lose softball because I gave it up.
I lost it because my body absorbed a force it should not have had to.

That distinction matters.

What I wish people had asked instead was not really about sports.

What does your body need right now?
What changed that you are still carrying?
Do you want to talk about what you had to let go of?

Not because I always wanted to answer—but because those questions do not rush healing. They do not ask me to skip ahead to a version of myself that has not arrived yet.

A Kinder Rewrite

Because language matters—and because most people were not trying to hurt me—here is the rewrite I wish we had shared.

Instead of
“When are you going to be able to play softball again?”

Try:

“I know your recovery has been complex. How are you doing lately?”
“I imagine some things had to change. What has that been like?”
“You do not have to have a timeline. I just wanted to check in.”

These questions do not assume a finish line.
They do not treat healing like a detour.
They leave room for answers that change.

Where I Am Now

I am learning that acceptance does not come from forcing gratitude.

It comes from letting anger and grief sit at the table without being scolded.

Because the question was never really just about softball.

It was also:

When will you work again?
When will you drive again?
When will you walk without thinking about it?

When will your life look useful again?

We rarely ask those questions out loud. But they hover. And they carry the same expectation—that endurance is virtue, that sacrifice is love, that a good woman will keep giving until there is nothing left to give.

Especially when she is capable.
Especially when she has always been strong.
Especially when she has played through pain before.

I was taught—implicitly and relentlessly—that rest needs justification. That limits are negotiable. That if I can still show up, I should. That my worth is measured by how much I can carry without complaint.

But my body has been teaching me something truer.

That care is not selfish.
That listening is not weakness.
That honoring limits is not failure. It is wisdom.

I can be thankful I survived and still be devastated by what I lost.

I can accept what is without surrendering my right to grieve what is not.

And if I ever play softball again—or work the way I used to, or drive freely, or move without calculating risk—it will not be because I sacrificed myself back into shape. It will be because my body decided it was safe. Or because I learned how to live well inside a different kind of strength.

Either way, I do not owe anyone a timeline.

And neither does anyone else whose body has asked them to stop.

When pain is constant and neurological symptoms stack on top of each other, the first thing to erode isn’t happiness or optimism, it’s cognition. Your thinking narrows. Your tolerance shrinks. Your world becomes very small and very loud inside your head.

I want my mind back because I can feel what chronic pain and neurological strain are doing to it.

A little history, because it didn’t start yesterday

Three years ago, I was in a high-speed collision with a semi. It wasn’t subtle. It wasn’t minor. And while I walked away upright after being medically evaluated, my nervous system clearly didn’t.

At the time, I did what a lot of people do. I adapted. I pushed through. I trusted that things would settle. I had spent a decade of my life as a teacher, was used to managing chaos, pain, noise, and long days. Endurance was familiar territory.

When I eventually changed careers and went back to school for nursing, I thought I was starting a new chapter. I graduated at 38 — fresh out of college again, with my fourth degree — which still makes me laugh in a darkly practical way. Apparently I enjoy reinvention.

That nursing career was barely underway before my body intervened. In fact, I was on my way to my full-time RN gig, only a couple of months in, when the crash happened.

What accumulated quietly

Over the years following the accident, symptoms stacked in ways that didn’t fit tidy explanations.

Positional headaches.
Neuropathic pain.
Pelvic and leg symptoms.
Pressure. Fatigue. Cognitive strain.

Imaging eventually revealed perineural cysts along nerve roots — often called incidental, even when symptoms line up uncomfortably well. For a long time, mine were watched, minimized, or framed as unlikely to be causing real problems.

Until surgery proved otherwise.

Surgical findings confirmed that these cysts were not passive. They were interacting with nerves and surrounding structures in ways that explained years of symptoms. The surgery helped — enough to give me a window of relief, function, and mental clarity. Enough to remember what it feels like to think without pain constantly crowding the edges.

That window mattered.

Where things stand now

Symptoms have returned, though not identically. I’m now awaiting further neurological testing to investigate possible cerebrospinal fluid abnormalities and pressure-related issues.

These tests require endurance — long drives, prolonged positioning, and physical tolerance — at a time when being upright or lying flat for extended periods can trigger severe symptoms. The irony is not lost on me.

Between appointments, I manage pain at home with medication, heat, ice, pacing, nerve stimulation, and rest. Emergency care has not historically helped, and experience has taught me that showing up visibly unwell does not always lead to being believed.

So I wait. And I cope. And I try to protect my mind.

The medication and mental health piece I’m not hiding

Chronic pain doesn’t exist in isolation, and neither do the medications used to treat it.

Some medications help one symptom while worsening another — cognitive dulling, emotional flattening, agitation, or intrusive thoughts. Others interact with anxiety, depression, or trauma histories in ways that are rarely acknowledged out loud.

I’ve navigated prescribed medication that helped pain but destabilized my mental health, and others that preserved my mind while leaving my body struggling. That balancing act requires constant self-monitoring and adjustment. It is work. And it is exhausting.

Naming mental health impact does not mean the pain is psychological. It means the brain and nervous system are involved, as they always are.

The language that makes waiting heavier

One phrase I’ve heard often is:

“These cysts are usually incidental.”

Why it sounds reassuring:
It suggests most people are fine and that concern may be unnecessary.

Where it becomes gaslighting:
It disconnects imaging from symptoms without curiosity. It implies that common findings cannot cause uncommon suffering. It quietly shifts the burden of proof back onto the patient, who is already managing pain, side effects, and uncertainty.

A kinder rewrite:
“Perineural cysts affect people differently. Given your symptoms and surgical findings, it makes sense to take this seriously and continue investigating how they may be contributing.”

Another phrase that has followed me for years:

“Let’s just watch and wait.”

Why it sounds reasonable:
It implies caution, patience, and careful monitoring.

Where it becomes gaslighting:
Waiting is not neutral when symptoms are progressing. Watching and waiting for three years after a high-speed accident, through career disruption, escalating pain, and now surgical confirmation, stops being conservative care and starts becoming neglect.

A kinder rewrite:
“We’ve been observing this for a long time, and I recognize that waiting has had real consequences. Let’s talk honestly about what continued waiting costs — and what options exist when observation is no longer serving your quality of life.”

Why I’m writing this now

I’m writing because pain narrows the internal world, and I don’t want that narrowing to define me.

I’m writing because language shapes care, and careless phrasing can undermine trust faster than most people realize.

And I’m writing because today is a bad pain day, and I feel unheard. Naming that doesn’t weaken this piece — it explains why it exists.

I want my mind back.
Not as a metaphor.
Not as a punchline.

I want it protected, respected, and believed — even while my body remains complicated.

If you’re reading this while waiting, adapting, or quietly enduring, the time counts. The losses count. The clarity you’re fighting to preserve still matters.

I’m still here.
Thinking when I can.
Writing when it helps.
Holding onto my mind as carefully as I know how.

Today, a long-standing concern I’ve been raising for years was finally confirmed. I was diagnosed with a moderate to advanced bladder prolapse, a condition where the bladder loses structural support and shifts downward, often causing pressure, leakage, and symptoms that worsen with standing or movement. It’s a physical, mechanical issue . Over the past couple of years of telling primarily male doctors about my concerns to no avail. Just this week I found out they were not imagined, and not caused by anxiety, motherhood, or not doing enough Kegels. I mean I knew the truth. I can feel the changes. My pelvic floor physical therapist confirmed it first. And it’s not just my bladder either, so it didn’t happen overnight. Rectocele and cystocele as well. Gravity has been beating up my (suspected) connective tissue disorder for years.

What stayed with me wasn’t just the diagnosis, but the quiet grief of realizing how long it took to reach it. For years, I adjusted my life around symptoms that were minimized or normalized. When concerns like this are brushed aside, it slowly teaches people to doubt their own bodies. Validation brings relief, but it also brings mourning for the time spent unheard. And to top it off, it’s not just my bladder. It’s the other pelvic organ systems as well, which require other specialists. It is going to require further specialists, further treatments, another surgery. I’m 42, and dealing with the incontinence and lack of control of these organs over the past couple of years is a really tough pill to swallow. There is something about losing control of the way “normal” bodies function-especially when we are talking about the functioning of our “private areas.” It’s such a taboo topic for so many people.

If you’ve ever felt dismissed while your body kept asking for care, you’re not alone. Sometimes being believed arrives gently, and still can change everything.

— MJ Felt

This is a Kinder Rewrite series about medical language. This series is for anyone who was told to wait, minimize, normalize, or endure—when what they needed was curiosity, listening, and care. This is a Kinder Rewrite series about medical language.
I am beginning with phrases patients often hear when their symptoms do not fit neatly into time limits, checkboxes, or expectations.

This series is for anyone who was told to wait, minimize, normalize, or endure, when what they needed was curiosity, listening, and care.

These rewrites are not about blaming individual doctors.
They are about examining how certain words, said casually and repeatedly, can create shame, delay care, and teach people to doubt their own bodies.

If you have ever heard this from a doctor, you may also recognize the quiet feeling that follows, you have probably also felt the twinge of feeling unheard or dismissed.

• “Well… you’ve had three kids.”

• “That’s just (peri-)menopause.”

Why It Sounds Dismissive (Even If Unintentional)

These phrases are often said casually, as if they explain everything. They rely on common experiences like childbirth and aging to shortcut deeper investigation.

Where Shame Creeps In

This language quietly teaches patients to expect loss of function as the cost of living in their bodies. It implies that symptoms are normal, inevitable, or not worth pursuing. Overtime, this kind of dismissal trains women to stop trusting their own bodies and to stop speaking up.

The Kinder Rewrite

“Your history of childbirth and hormonal changes gives us important context, but it doesn’t automatically explain your symptoms.”

Why This Matters

Being told “this is normal” should never mean “this is acceptable.” Let’s be honest…normalization without evaluation isn’t reassurance. It is erasure.

And ‘normal for women’ should never mean ‘not worth treating.’

I have spoken to so many of my friends and relatives, and have witnessed and am currently experiencing significant health problems due to these very comments and dismissals. I am still working through finding the best ways to respond to dismissive comments from medical professionals. I am trying to personally explore my boundaries and want to give future patients the opportunity to respond in ways that counteract the dismissive tone and biases of medical professionals. So, here are some responses that can be used to advocate for yourself and your health in this situation.

Kinder, Clear Responses (Low Energy)

Use these when you’re exhausted but need the record corrected.

• “I understand that can be a factor. What I’m describing is a change from my baseline.”

• “I’m not asking whether this is common; I’m asking whether it’s been fully evaluated.”

• “This is affecting my daily function. What are the next steps to assess it?”

Kinder but Firmer (Redirecting the Conversation)

These gently move the doctor out of dismissal and into responsibility.

• “I’ve been reporting these symptoms for years. What might explain the progression?”

• “Can you help me understand why this wouldn’t warrant further evaluation?”

• “What would be different if I hadn’t had children?” (It exposes bias without accusation.)

Boundary Statements (For the Medical Record)

Short, neutral sentences that matter because they get charted.

• “I’d like it noted that I’ve raised these concerns multiple times prior to today.”

• “I don’t feel reassured by this explanation alone.”

• “I’m requesting further evaluation or a referral.”

• “I want to be sure we’re not attributing everything to gender or age without ruling out structural causes.”

Normal life stages shouldn’t automatically exclude pathology. And this happens a lot in health care. And it is costing individuals their health.

What I Wish Providers Understood

Most patients are not looking to be dramatic, difficult, or reassured. They are trying to translate bodily signals into language quickly, under stress, often while in pain or fear. When familiar phrases are used to move things along, even kindly, they can unintentionally close the door to curiosity.

Shame-based language does not usually sound harsh. It sounds efficient. It sounds like normalization, reassurance, or experience talking. But when symptoms persist, worsen, or do not fit expectations, those words often teach patients to doubt themselves and delay care. What helps instead is slowing the exchange just enough to ask better questions, to name uncertainty honestly, and to treat a patient’s concern as data rather than exaggeration.

What Helps Instead

(Especially for Patients With Trauma Histories)

Trauma changes how the nervous system processes language, authority, and uncertainty. Many patients are not reacting to the present moment alone, but to a history of not being believed, being rushed, or having their boundaries crossed. What helps is not perfection, but predictability, transparency, and choice.

Simple shifts in language can lower threat responses. Naming what you are doing before you do it. Asking permission even when consent seems implied. Explaining uncertainty instead of masking it with reassurance. Phrases that acknowledge effort, signal curiosity, and keep the patient oriented in time help rebuild trust and reduce dissociation.

Most importantly, trauma-informed care slows the moment just enough for the patient to stay present. When language invites partnership rather than compliance, patients are more able to share accurately, tolerate exams, and remain engaged in care.

What De-escalates

De-escalation often comes from orientation and choice. Naming what is happening, explaining transitions, and acknowledging uncertainty help patients stay grounded. Small permissions matter. Asking before touch, checking readiness, and allowing the pace to slow can reduce threat more effectively than reassurance.

When language reflects curiosity rather than conclusion, patients feel partnered instead of managed. Consistent, predictable communication builds trust over time and often leads to calmer bodies, clearer histories, and more effective care.

Conclusion

Patients and medical professionals are not opposing sides. Most harm happens in the space between them, inside a system that prioritizes speed, documentation, and risk management over communication and understanding. When language breaks down, trust erodes, symptoms escalate, and everyone loses time and clarity.

Better care is not about perfection or blame. It is about learning how words land in bodies under stress and how small shifts in communication can change outcomes. When patients are treated as partners and providers are supported in practicing curiosity rather than efficiency alone, care becomes safer, more accurate, and more humane. The system may be deeply flawed, but clear, respectful communication is one place where real repair can begin.

“You just have to push through.”

Why It Sounds Encouraging

This phrase is usually meant to express confidence in someone’s strength and to offer motivation during a hard moment. Many people learned it as a survival skill, and they share it because it once helped them keep going.

Where Shame Creeps In

When “push through” is used in situations involving chronic illness, trauma, or ongoing stress, it can quietly place responsibility on the person who is already struggling. If pushing doesn’t lead to improvement, or makes things worse, the message can start to feel like a personal failure rather than a physical or situational reality. Over time, this language can blur boundaries and teach people to override pain, exhaustion, or limits in order to stay connected or appear capable.

A Kinder Rewrite

“You don’t have to push past your limits to prove strength. It’s okay to listen to what your body and mind can realistically handle, and we can take this one step at a time.”

Why This Matters

Language that frames endurance as the solution can undermine boundaries and teach people to ignore their own limits to maintain connection.

Clear boundaries help people stay connected without causing harm.

If someone says “You just have to push through,” here are responses that protect connection and limits:

• “I know you mean well. Pushing through actually makes this worse for me, so I’m choosing a different approach.”

• “That works for some things, but right now listening to my limits is what helps.”

• “I’m not giving up — I’m pacing myself.”

• “Rest and adjustment are part of how I get through this.”

• “I don’t need motivation right now. I need support that respects my limits.”

Sometimes, when language starts to feel strained or incomplete, it helps to pause and ask: Is there a kinder way to say this? Not a better argument. Not a louder opinion. Just words that leave more room for everyone.