13 days ago, I was in a pretty significant car accident.

I was alone in my car.

There is one visual flashback my brain will give me.
It lasts maybe a second long. 

the hood crumpled 

the airbags deployed

smoke settled into my lungs

I can still smell it

I lost consciousness. 

Later, the ER doctor told me there were cracks in my sternum.

My ribs.

Bruising at the base of my skull
and the top of my spine
from my head ricocheting back and forth after impact.

Apparently, I hit the steering wheel.
Or the airbags.
Or both.

Not once.
Not twice.
At least a couple of times.

I don’t remember that part.

I don’t remember a lot of it.

They called it a moderate to severe concussion.

Now they’re labeling it a TBI.

I didn’t know those words could become interchangeable like that.

I didn’t know I could be wheeled into an ER after a car accident
and leave with a brain injury.

Did you know that?

And somehow, 13 days later,
the pain — everywhere —
continues to get worse
instead of better.

I haven’t told 
very many people 
anything about August 11th. 

Honestly, Ive avoided using the words 
crash and accident and 
paramedics, 
EMTs and ambulances and gurneys 
and firetrucks - but not because saying them  makes them any less true or critical 
or integrated into this experience… 

I just don’t can’t say them out loud.

Or maybe I just don’t have enough energy to assemble them into something that feels meaningful.

And this, for a verbal processor like yours truly, is its own kind of torture.

I have spent years learning how to put words around illness.

Acute illness.
Chronic illness.
Surgeries.
Emergencies.
Bacterial meningitis.
An abscess in my brain.
Years migraines nobody could explain.

I have almost always been able to find the words.

Right now, I can’t.

This season, well really, since the fall of last year, I’ve been sort of silent in a relatively new and somewhat surprising way for myself. 

I’ve kind of found tiny ways to crawl inside of myself as if to hide, to seek whatever safety may temporarily feel available to me at that very moment, and to attempt new ways of overwriting trauma both new and old - in ways i’ve never tried or had never been suggested to me before. 

I don’t entirely know why.

Maybe because I don’t know how to talk about something I still can’t completely remember. 

Something I’m ashamed of.

Something I’m embarrassed about. 

Something I never want to think about again, and… yet have no other choice. 

Maybe it’s because I’ve spent almost two weeks, alone, in dark rooms, without screens, trying to let my brain heal - which is hard and lonely and exhausting and counter productive to everything on my mental to do list. 

Or maybe because saying any of this out loud means admitting how scared I continue to be.

I just keep visualizing the moment of impact. 

It could’ve happened to anyone. 

I just keep visualizing the moment of the impact.

And insanely, trying to make sense of parts after the collision that I don’t remember, no natter matter how much I try. 

I keep wondering what happened during the time my brain just… wasn’t there.

There is something deeply terrifying about your own brain becoming an unreliable narrator.

About opening your eyes and realizing time has passed - without your knowledge. 

About your body hurting in places you didn’t know could hurt like this.

My brain doesn't entirely remember what happened. 
My body apparently does. 

I haven’t known how to say this.

Actually, I haven’t wanted to say it.

Because saying it makes it real.

There are cracks in my sternum. My ribs.

A moderate to severe TBI.

And pain that, instead of getting better as the days pass, has continued to get worse.

But it’s the fear I don’t know what to do with.

About getting into a car now and feeling my entire body light up with dread and fill with panic before my brain can even catch up.

I think I’ve spent the last 13 days trying to convince myself that if I stayed quiet enough, 

If I rested enough, 

If I kept the room dark enough, 

If I didn’t ask too many questions about the pieces I can’t remember…

eventually I’d wake up and feel like myself again.

I haven’t.

I don’t.

Right now I just feel scared and hurt and really fucking alone.

And I think maybe the loneliest part is realizing that I made it that way.

I didn’t tell people.

I didn’t know how to say “something really scary happened to me and I’m not okay.”

I still don’t really know how to say it.

So I guess this is me trying….

I’m scared.

I need help.

I fucking hate that I need help.

I don't even know what help means.

I just know I can't keep pretending I don't.

Those words felt impossible.

They still kind of do.

There isn’t a lesson here.

I don’t know how long my brain is going to take to heal.

I don’t know when my chest will stop hurting.

I don’t know when I’ll close my eyes without seeing pieces of it.

I don’t know when being in a car will stop terrifying me.

I don’t know when I’ll feel safe inside my body again.

It’s been 13 days.

I’m hurt.

I’m scared.

And right now, that’s the whole fucking story.

[Authors note: I wrote this 13 days after the accident, while still recovering from the TBI. I have intentionally left some of the places where my words tangled themselves together. This is… me. In real time.]

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Not in the inspirational way people sometimes ask, where they’re hoping you’ll hand them a quote about resilience or finding the silver lining.

They meant it literally.

Like, actually, how do you keep choosing tomorrow when your body hurts this much today?

The honest answer is that I don’t wake up every morning overflowing with courage. I don’t have some secret reserve of optimism tucked away that other people don’t.

What I have are ledges.

A friend asked me recently what helps me hold on when the pain becomes intolerable, when I need to crawl out of my skin, but I clearly cannot, and when there are no other options - in that moment - no treatments left to try, no medication that makes a meaningful dent, no procedure that promises relief instead of another recovery.

My answer surprised even me.

“I just think… if I can give more to motherhood when I can, there will be more of a ledge to hold onto.”

I didn’t realize how true it was until I heard myself say it.

Because here’s the thing about living with pain that isn’t expected to end.

People assume your life becomes smaller because your body becomes smaller.

Sometimes that’s true.

There are days my world shrinks to the size of my bed.

Days where brushing my daughter’s hair feels like an endurance event.

Days where I measure success by whether I made it downstairs before noon.

But motherhood has this remarkable way of refusing to stay small.

It’s seven-year-old questions about the stars.

It’s watching her learn to read words she couldn’t decipher yesterday.

It’s hearing a joke she’s told a hundred times, but somehow today she changes the ending.

It’s seeing the outline of the person she’s becoming appear almost overnight.

I don’t want to miss that. Not even one minutes worth.

Don’t get me wrong, it’s not because I think my pain will magically become meaningful.

And it’s not because motherhood erases suffering.

It doesn’t. Not even a little bit.

There are moments when the contrast is almost unbearable — watching the person you love most run toward a future while you’re negotiating whether your own body will let you stand long enough to make dinner.

But every memory I make with her becomes another handhold.

Another place to grip when the cliff feels too steep.

People often talk about “reasons to live” as though they’re singular. As though one grand purpose arrives and suddenly everything makes sense.

My experience has been quieter than that.

It’s accumulated.

One bedtime story.

One conversation in the car.

One drawing taped to the refrigerator.

One sleepy “Love you, Mama.”

Each one becomes another layer.

Another thread woven into a rope strong enough to bear more weight than I ever imagined it could.

I don’t know what tomorrow’s pain will ask of me.

I do know that tomorrow my daughter will beg me to get out of bed before 7am so we are ready to get to Target the moment it opens.

Tomorrow’s a big day.

Tomorrow we are going school supply shopping.

And although I’ll have to use a mobility aid, my sweet girl is too young or too naive or too cool to give a fuck about that. She’s out of her mind excited that her and mama get to go to the store together to pick out her supplies instead of doing it on the computer screen like we have the past two years.

And the added bonus? Tomorrow we’ll pick out Kindergarten supplies to donate to her school in honor of Noah and Victoria, who would’ve started Kindergarten this fall. I think she's most excited about that part, to be honest. And that tells you everything you need to know about my daughter as - as a big sister to siblings in heaven, as an emotionally mature adult, and as someone who cares softly, gently, and with her whole heart. More on this later.

I want to know who she becomes - not just as she transitions from first grade to second, and from age seven to age eight, but who she grows into. The child, the preteen, the teenager, the young woman she’ll become.

I want to witness the ordinary miracle of her growing up, for as long as this body will let me.

Sometimes people think survival has to come from hope that things will get better.

Sometimes it comes from love that’s already here.

Sometimes staying alive isn’t about escaping the pain.

Sometimes it’s about refusing to let the pain have the final word.

Listening to my body
is hearing the groans 
and the whispers,
begging me to crawl back 
beneath the covers.

A few stolen naps
cannot repay years of borrowed sleep.
Until the pain loosens its grip,
the exhaustion will always outrun me. 

Listening to my body
means surrendering 
the version of me
who believed 
she could outwork suffering.

It means abandoning the checklists,
the promises made to everyone else—
the ones whose bodies 
still wake each morning
as though they’ve been reset
to factory settings
and can simply begin again. 

It means grieving the woman
I once was -
the one who could 
push through anything,
who wore endurance 
like a badge of honor,
never realizing
she was spending a body
that could never earn itself back.

Because every time 
I ignore the whisper,
my body has learned 
it must scream.

And every scream
is another reminder
that survival and 
self-abandonment
were never meant 
to be synonyms.

Maybe listening isn’t giving up.

Maybe it’s believing 
my body, 
after a lifetime 
of asking it
to prove its pain.

Maybe healing begins 
the moment
I stop treating 
compassion
like something 
everyone deserves
except me.

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There was a time when “doing” saved my life.

I’m not saying that metaphorically.

When my body started falling apart, I learned to research. 

To ask better questions. 

To advocate louder. 

To find the best specialist, no matter how many tries, how many miles, how many times I had to repeat my story. 

To appeal the insurance denial. 

To read the journal article. 

To make the spreadsheet. 

To keep going.

When infertility stole the future I thought I’d have, I learned everything I could about IVF. Then I became an infertility doula so I could help other people survive it too.

When chronic illness rearranged my life, I adapted. I learned, I earned a Masters in Public Health and a Professional Certification of Achievement in Narrative Medicine, and I became a patient advocate professionally.

When grief cracked me open, I wrote. I drafted a manuscript in the process of becoming some sort of memoir. 

When trauma threatened to swallow me whole, I searched for the next treatment, the next therapist, the next thing that might help me stay alive.

Doing became my native language.

It wasn’t just who I was.

It was how I survived.

The problem with survival strategies is that we rarely notice when they stop serving us.

The very thing that once kept us alive can quietly become the thing keeping us from living.

For years, I believed that if I just worked hard enough, learned enough, advocated enough, processed enough, produced enough... I’d eventually arrive somewhere safe.

Some mythical place where my body would stop betraying me.

Where grief would finally loosen its grip.

Where healing would feel complete.

Except healing doesn’t seem to work that way.

This past year has demanded more of me than I knew a person could give.

Not just physically, although my body has certainly had plenty to say about that.

Mentally.

Emotionally.

Spiritually.

Recently, my heart silently shattered.

I didn’t tell anyone, but I noticed. 

I paid attention.

I noticed. 

And I listened for the very first time in my entire god damn life. 

I’d reached a point where there was nothing left to optimize.

Nothing left to fix.

Nothing left to accomplish.

My nervous system, my brain, and my body staged what felt like a coordinated mutiny.

Shutdown.

For the longest time, I viewed that shutdown as the greatest failure of my life. 

I was frustrated that I couldn’t push through it.

Ashamed that I couldn’t “get back to normal.”

Terrified that  I’d lost something essential about myself.

But I’m beginning to wonder if my body wasn’t failing me.

Maybe it was protecting me.

Maybe it knew before I did that the version of me who survived all those years couldn’t also be the version of me who healed.

Because healing, it turns out, asks something entirely different.

Not more effort.

More presence.

Not more answers.

More acceptance.

Not another thing to do.

Just...to be.

I wish I could tell you I’ve mastered this.

That I’ve suddenly become someone who sits quietly with herself, who doesn’t instinctively reach for the next project, the next article, the next way to make meaning out of suffering.

I haven’t.

Honestly, “being” feels wildly inefficient.

It feels uncomfortable.

It feels vulnerable.

Sometimes it even feels irresponsible.

Because somewhere along the way, I learned that my worth was measured by what I could carry, solve, create, or endure.

And now I’m being asked to believe something entirely different.

That I have value even on the days I produce nothing.

That rest is not something I earn.

That existing might actually be enough.

I’m not fully convinced yet.

But I’m willing to become the kind of person who tries.

After all these years of surviving by doing, perhaps this next season isn’t asking me to fight harder.

Perhaps it’s asking me to trust that I don’t have to earn my place in the world every single day. [Writing this sentence has me choking back tears and vomit both at the very same time. This one - it’s going to take tiiimmmmeeeeeeeeee and convincing and progress and patience and hand holding to believe.


Perhaps the bravest thing I’ll do isn’t accomplishing one more impossible thing.



Perhaps it’s allowing myself to simply exist.



To be.



And believing, however slowly, that who I am has always been more important than what I can do.

A Note to the Reader:

As I finished writing this piece, someone reflected something back to me that I hadn’t yet been able to articulate for myself.

This isn’t really a post about slowing down.

It’s about grieving the loss of an identity that literally kept me alive.

That stopped me in my tracks.

Because when I look back over the last decade of my life, I can see the pattern everywhere. Whenever something terrible happened, I responded. I researched. I advocated. I wrote. I found the specialist. I learned the science. I searched for answers. I tried to create meaning from suffering.

Doing wasn’t simply productivity.

It was protection.

It was the way I reclaimed agency in situations where my body repeatedly took it away. It was the survival playbook that carried me through infertility, chronic illness, unimaginable grief, depression, and trauma. It wasn’t just how I coped. It was who I became.

What feels different now is that my body seems to be whispering something I’ve resisted hearing:

That strategy worked... until it didn’t.

There’s something incredibly humbling about realizing that the thing that once saved your life may no longer be what helps you heal.

And perhaps the hardest part of all is this: I didn’t arrive at stillness through wisdom or enlightenment. I didn’t suddenly discover the beauty of mindfulness or decide to embrace a slower life.

I arrived here because there was literally nothing left to spend.

It quite literally took complete physical, emotional, and mental shutdown before I was willing to entertain the possibility that in a universe parallel to this one, one I haven’t yet been introduced to but I’ve heard others speak about, maybe my worth isn’t measured by what I can produce, solve, fix, or endure.

I’m still trying to embrace this. To recognize it. To take it. To learn that lesson.

Truthfully, I don’t know if I’ll ever fully stop reaching for “doing” when life becomes difficult. That instinct has served me for too long to disappear overnight.

But I know now for sure this season isn’t asking me to become someone different.

My intuition, the one guiding principle that has not failed me once - it’s simply asking me to believe that I was always worthy, even before I accomplished a single thing.

I remember the walk back to the parking garage more clearly than I remember leaving the hospital.

The appointment had become a kind of postmortem M&M conference.

Except, I was the one leading it.

I, the brand newly bereaved mother.

I, the patient, not the physician.

But none of that actually mattered.

That morning become a series of goodbyes.

The kind you never really come back from.

And then, somewhere between the Maternal Fetal Medicine office and our car, I looked at my husband and said,

“Well… I delivered not one, but two babies this morning, and nobody is ever going to ask to see them. Right now that feels like the most heinous part of this nightmare.”

At the time, I thought I was talking about other people.

Now I think I was trying to convince myself that what had just happened was even real in the first place.

Because when your baby dies in your hand, in front of your eyes, at home, in the middle of the night, the world doesn’t always know where to place your motherhood.

People know how to celebrate new babies.

They know to ask for pictures.

To ask how much they weighed.

Who they look like.

Whether they’re sleeping.

Whether you’re sleeping.

They don’t know how to ask about the babies who don’t come home.

Most don’t ask at all. It’s just too hard to find the words.

I’ve often thought about how remarkable it is that we expect first-time parents to know both so little and so much the moment their family expands from two to three.

There are childbirth classes.

Breastfeeding classes.

Books for every week of pregnancy and every stage of infancy.

But nowhere does anyone tell you that becoming a parent is less like learning a new skill than being dropped into a new planet while everyone assumes you’ll already know the language

Then, overnight, you’re responsible for keeping another human being alive. There are no days off. No PTO. No training period. You’re exhausted, overwhelmed, terrified, and convinced everyone else somehow knows what they’re doing better than you do.

New parents spend months asking questions.

Is this normal?

Who should I call?

Should I be worried?

And almost every question has somewhere to go.

What about when your baby dies? .

There are no instructions.

There’s not even anything that looks like it could potentially be an instruction.

No one tells you what it feels like to walk around in the world inside a body that still feels very much postpartum, that is profusely and hysterically bleeding, that often times already has had milk come in, feels swollen, traumatized, and exhausted.

They only see empty arms, and they cannot do the math between what was what is and what should’ve been

No one tells you how to answer when someone asks if you have children, or how many children you have now.

No one tells you whether it will always hurt this much.

That was the question I carried the longest.

The heaviest one.

It still finds me sometimes without warning.

Standing in the grocery store.
Driving home.
Folding laundry.

It arrives before I realize I’ve been thinking about Noah.

Not Why me?

Not How did this happen?

Just…

Is this ever going to hurt less?

For a long time, I mistook functioning for healing.

I answered emails.

Made dinners.

Packed backpacks.

Showed up to work.

Remembered birthdays.

Paid bills.

I smiled when I was supposed to smile. I laughed when something was funny. I tucked my daughter into bed each night and somehow kept moving through days that should have been impossible.

From the outside, it probably looked like I was surviving remarkably well.

From the inside, it felt like someone had quietly unplugged me from my own life.

I wasn’t forgetting Noah.

I was forgetting myself.

I couldn’t have told you then that I was dissociating. I didn’t have that language.

I only knew there was a strange spacer between what had happened and what I was able to feel. My mind seemed to ration grief into portions small enough that I could keep putting one foot in front of the other.

Looking back now, I think that distance saved my life.

It also delayed it.

For six months, I don’t think I actually fully wrapped the tragedy I’d been forced to survive.

Or maybe I couldn’t know.

Looking back now, I think my body just kept moving because it had to. My brain protected me from a grief too large to hold all at once. It also allowed me to continue parenting my then 2.5 year old living daughter while still presenting to her as “mommy.”

Then one day the protection wore off.

The unraveling began.

Ironically, I think that was the moment I actually started grieving.

Loss is complicated.

Our story began with Vanishing Twin Syndrome.

Victoria existed first as hope.

As possibility.

Her absence complicated everything that came after because I spent weeks believing the baby I’d continue carrying was my daughter.

By the time I learned the truth, I had already rearranged my heart around the baby I thought had survived.

Instead, it was Noah.

Noah wasn’t possibility.

He was here.

He was born alive.

He lived.

Only for a minute.

Sometimes people try to rank griefs, as though one somehow cancels another.

They don’t.

Victoria and Noah occupy different places inside me.

One was the loss of the future I imagined.

The other shattered the definition of motherhood I’d spent my entire life building.

Before Noah, I thought motherhood ended with bringing a baby home.

After Noah, I learned motherhood could exist without witnesses.

Without photographs on the mantel. Without school pictures. Without anyone outside your family ever knowing your child existed.

Without birthday parties.

Without first steps.

Without anyone asking to see your baby.

I still don’t know if grief hurts less.

I think it hurts differently.

I think I’ve simply become stronger at carrying it.

And if I could go back to the woman walking through that parking garage, still bleeding, still postpartum, still a mother despite feeling invisible and heartbroken, I don’t think could tell her it gets easier.

But I do think that I could, and then I would tell her the truth. I’d kneel beside her instead. I’d take her hand, look her in the eyes, and say the words I wish someone had said to me..

Because all of the versions of me were right. 🙈

I will never be the same.

But I will still be Noah’s mother.

One day I’ll realize that nobody asking to see him doesn’t mean he wasn’t here.

It only means the rest of us have to get better at asking.

Every baby deserves to be witnessed.

Even the ones whose entire lives fit inside a single minute.

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I keep trying.
I keep trying
to get into my own head.
But like staying at a hotel,
the key card I swipe
continues to say
Denied.

It is the oversized shawl 
in your grandmother's closet,
that absolutely 
had to have been 
a tablecloth 
in a past life 
but now carries
a different kind of heavy.

Loss makes archivists of us.
The edges of their fingernails.
The way they laced
their fingers together
when they were sad,
or mad,
or angry,
or afraid.

You can say those things out loud...
You can give them to the obituary writer
or the sermon giver 
or the person speaking 
on behalf of your beloved - 
but they will come out wrong 

They will sound sticky 
and mixed up,  
Like trying to remember
a language
you’ve forgotten
you know how 
to speak, 
while everyone watches
awkwardly,
sniffling 
and shifting their gaze. 

But it won’t matter. 
because no matter what words are said,
by whom
where
or 
when, 
it will not bring them back to you. 

It will not deflate your belly, 
still confused by the mixed signals 
it’s receiving.

There was life.

Honest life.

Living inside of you
one moment.

And then just...

Gone.

It will not teach your body 
that empty
and gone
are not the same thing.

Mostly, it’ll just feel like 
your skin continues to get scraped 
by a serrated blade - 
One you didn’t want.
Didn’t ask for.
Didn’t buy.

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“I’m sorry you didn’t like hot lunch. I don’t want you to be hungry this afternoon. Do you want some of what my mom packed for me?

“I’m sorry your grade wasn’t as high as you hoped. I’m happy to study with you next time. I know the next one will go better for you.”

“I’m sorry that you tripped over the bark chips at the park. That skid mark on your knee must hurt. Do you want me to take you to the nurses office?”

But then I started keeping a mental checkbox every time something came out of my mouth without my brains approval … and I quickly realized that almost every single time, that was some version of an apology.

As a kid, “I’m sorry” meant, “I hate that you’re hurting.” Somewhere along the way, it became, “I hate that I’m taking up space.”

Somewhere along the way, “I’m sorry” stopped meaning empathy and started meaning permission.

Permission to ask for help.

Permission to take up space.

Permission to need something.

“I’m sorry to bother you, but can you help me with something quickly? I can’t reach the papers our teacher put on top of my classroom mailbox.”

What I meant - Im simply too short to reach this. But asking you to do it for me made me feel like I was too much. Too needy. Too complicated.

“I’m sorry that I got upset earlier - I was feeling too much and I took it out on you by mistake. You didn’t do anything wrong. Please forgive me. I promise I won’t do it again.”

What I was feeling - was that I wasn’t regulating my emotions, or theirs either. I was trying to protect the relationship. I was working double or triple time under the premise that other people’s discomfort was my responsibility, and causing it felt like the worst crime in the world, along with an instant, devastating relationship ender.

“I’m so sorry I’ve asked too many questions.”

“I’m sorry I keep talking.”

“I’m sorry I’m in the way, I’ll move.”

Turns out in my brain, my “normal existence” included interpreting taking up space - mentally, physically, emotionally, financially - as a negative. As something I didn’t deserve, I wasn’t handed freely, as something I had to earn.

That’s when I became an environment reader.

Feeling responsible for all of the feelings happening in the room, on the phone, in the conversation, and adjusting my behaviors accordingly to be “easier,” “more tolerable,” “less noticeable.”

“Did I say something to upset you?”

This. If you’ve been my friend for more than a few weeks, you’ve likely heard dozens of versions of this over time.

It was only recently I learned it was relational hyper-viglance. That my safety came from how well I served as an emotional caregiver for others.

I wasn't scanning rooms because I was exceptionally kind. I was scanning them because my nervous system had learned that safety depended on anticipating everyone else's emotions before they became my responsibility.

If everyone around me was okay, maybe I'd be okay too. If I could anticipate disappointment before it arrived, maybe I could prevent abandonment before it happened.

Even this now, today, presently. This season, one in which so many of the skeletons in my closet have come out, surrounded me, and begun following me like a pack, I’ve become acutely aware of their existence.

About five months ago, when there was medical trauma memories followed by somatic trauma memories followed by loss memories followed by grief memories coupled with new grief and new fear and new challenges and new changes and new PTSD development - and outside of my husband, there’s only been two humans I’ve been brave enough or felt safe enough or seen enough to essentially say “can you please come sit with me and my scaries?” “They’re heavy and they might trigger feelings for you and I probably can’t mask my tears anymore but I don’t really want to feel all of this alone.”

Best. Decision.

Best. Gift. I’ve Given Myself in a Very Long Time.

It turns out the people who were meant to love me never asked me to apologize for needing them.

That’s a new rule I’m trying to make for myself.

It’s much harder than I thought it would be.

In recent seasons I’ve learned about other types of apologies I’ve spent my life offering…

Apologizing for not having the answer to a question I’ve never been asked for

Apologizing for not being able to fix a problem well out of my wheelhouse

Apologizing for not being able to take away someone else’s pain

Apologizing for not anticipating someone else’s needs as well as I “should” have been able to

“Should'ing” myself left and right

And then I gave myself permission, just for a moment, to wonder…

How long I’ve cared around that tendency. I have a deep and sincere inclination that it’s shaped a lot of my Enneagram type 2 personality or released a lot of my type 2 tendencies at the very least.

So now, at age 40, I’m trying to retire the reflex of sorry.

Sorry for taking up space.

Sorry for needing help.

Sorry for being late,

sick,

overwhelmed,

emotinoanl,

human.

I’ve said it so often it became punctuation — a softening device, a preemptive offering, a way to make sure everyone else was still comfortable with me.

And there's an almost unbearable ache in admitting that part of me still believes that's true.

I shouldn’t let myself dial your number because there’s so many other things you could or should or need to be doing rather than listen to me talk about the same things on repeat.

I shouldn’t try to make plans so you don’t have to figure out how to gently let me down when you tell me you don’t want to hang out.

I haven’t gotten to choose my traumas, but I did think I was choosing the people who were walking beside me in them.

Even when people leave, my first instinct isn't anger.

It's still an apology.

That tells me everything I need to know about what I believe love required.

So instead, I’m trying to practice a different language.

Instead of “sorry I’m late,” I’m trying “thank you for waiting.”

Instead of “sorry I’m a mess,” I’m trying “thank you for your patience.”

It’s a small shift, but it changes the center of my gravity.

It moves me from shame to gratitude.

From shrinking to relating.

From assuming I’ve done harm to recognizing that we are simply navigating life together.

I don’t want to keep living as though every need is an offense. If I do, I think it might actually cause me to curl up inside of myself and hide.

I want to live as though connection can hold them — and that gratitude, not apology, is the truer bridge between us.

But this season, I’ve lost the ability to mask.

I’ve lost the ability to censor.

It’s uncomfortable and embarrassing and also true.

Its who I am.

It’s where I’m standing.

It’s everything I’m holding in the interim - which is nearly heavy enough to push me down and keep me there - and that, friends, is probably the most important thing I’ve spent the last nine months avoiding with everything I’ve got.

Maybe that’s what the little girl in me needed all along.

Not to be told she was helpful.

Or thoughtful.

Or mature for her age.

Not to earn her place in the room by anticipating everyone else’s needs before they had the chance to voice them.

She needed someone to look at her when she asked for help and say,

“You don’t have to apologize for needing something.”

“You’re allowed to take up space here.”

“You don’t have to make yourself smaller so everyone else can be comfortable.”

“You don’t have to earn being loved.”

I don’t think she ever heard those words.

So she learned a different language instead.

She learned to soften every request with “I’m sorry.”

To cushion every feeling.

To apologize before anyone else had the chance to decide she was too much.

Forty years is a long time to speak a language fluently.

Which means this season isn’t really about stopping saying “sorry.”

It’s about learning my first language all over again.

The one where my needs don’t require permission.

Where my presence isn’t a burden.

Where love isn’t something I earn by carrying everyone else.

Maybe that’s what I really mean today when I say sorry.

Not forgive me.

But…

I’m still learning that I don’t have to become smaller to be loved.

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Today I had three appointments
For different parts of my body

And nobody could agree
Which forming crisis
Should take precedence.

The port that gives me access
Was in the way of the images
Required by the mammogram machine.

The vagueness of how much
My small intestine absorbs
Led us to decide
It was finally time
For IV iron.

But not the kind they prepped
And scheduled me for.

Because my insurance is
From out of state
And they demanded
A different formulary
Thirty minutes after 
I walked out of the office. 

The images from the CT scan
I had done in March
At one hospital
Were supposed to be available
For request
At another hospital
To transfer to yet a third hospital
For a fourth opinion.

But the secretary
Tore apart my release form
As I stood helplessly
In front of her
And without making eye contact, 
She muttered 
“Stupid, stupid, stupid” 

The questions about family history
Burned in a way
That will never fade.

It’s just me.

Nobody else knows this life.
This pain.
This agony.

They asked
How many times
I’d been pregnant.

Which meant explaining
Pregnancy does not equal
A living child.

They asked
About my last period.

Irrelevant.

I lost my uterus
To a hostile takeover
More than a year ago.

I don’t have
A physical therapist
Who can prepare my body
For the surgery required
To repair the tear
In my meniscus.

The one that catches
On the bone spurs
That have formed
Underneath.

Every time
I move
In the wrong direction.

I had to choose
To get dosed
With my new old biologic
Tomorrow.

Without the critical
Data.

Without the labs
Ordered to assess
Whether the first dose
Two weeks ago
Was safe.

Every department
Has a piece
Of my body.

No one
Has the whole thing.

Somehow,
I’m expected
To be the one
Who carries
The complete chart
Inside my head.

To remember
Every medication.
Every surgery.
Every failed treatment.
Every phone call.
Every fax
That never arrived.

As though
The sickest part of me
Should also be
The administrative assistant.

This isn’t exhausted.

This is impossible.

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A year ago, there was a clear narrative.

On June 19, 2025, I received a single 30-minute infusion. One dose. One medication.

I walked into the infusion center expecting a few miserable days.

I walked out without realizing I’d just crossed the dividing line between the life I’d known and the one I was about to inherit.

This wasn’t an unfamiliar medication.

I’d known other people who had received it before.

& they went on with their lives just fine.

Looking back, I’m struck by how little conversation there was about how this medication fit alongside everything else my body was already carrying.

It was flippantly prescribed, probably in about 30 seconds time, by a doctor who I had met with ONCE, a year prior to that even, and whose PA I had met with a handful of times virtually in the interim.

Neither of them could pick me out of a lineup. Or match my face with name, my diagnosis, my medication history, or any of the information in my patient chart.

Let’s backup for a minute.

This nephrologist - he “is” a metabolic bone disease specialist, and I’d been referred to him in the summer of 2024 for repeat breaks in the same bones, over and over again. This is a known concern with the conditions I live with, so I wasn’t overly surprised by the assessment, to be honest.

What I was {mildly to moderately} surprised by?

• I waited months for the appointment.

• We didn’t review prior imaging.

• We didn’t perform a physical examination.

• We ordered labs for later.

Although, the thing that surprised me the most, at that point having been a chronic illness patient for 15 years and counting, was that at the same appointment, the day I met the man, he did something I’d consider unconventional for a non-emergent state…

The same day he learned whatever bits and pieces of my medical history he chose to ask about or review, without conducting a true physical exam, without reviewing past imaging studies or reports, without taking biopsies, and without having any lab results in front of him…. just before he walked out of the room, he hastily handed me a prescription for Tymlos, a bone-building medication for osteoporosis and osteomalacia (weak bones, soft bones).

These diagnoses - again, not a surprise. They’d developed over quite some time, certainly not overnight - they just hadn’t been outwardly identified or labeled until that year. Between 2022 and 2024, I spent nearly 75% of the time walking with an Aircast as the bones in my left foot kept breaking, repeating the same fracture pattern I’d experienced a decade earlier. One of those times, I broke my foot in two places by walking barefoot across the hardwood floor in my living room.

WALKING. BAREFOOT. AT. HOME.

Tymlos was an injection I’d be required to give myself at home each morning in my thighs or my stomach or even in my upper arms if somehow that contortion felt best(?)

.The problem was that Tymlos was never meant to be forever - but clearly, I wasn’t ever told that.

I learned that on the internet.

Two years is the maximum course of treatment even for patients who respond well to Tymlos before they’re required to transition to another medication - usually one you’ve probably seen advertised, like Prolia, Reclast, Fosamax, or Boniva - one to preserve the new bone Tymlos builds.

But I never got two years.

I made it just shy of six months before developing hypercalciuria, spilling dangerous amounts of calcium into my urine. By the time the emergency room diagnosed kidney stones and kidney calcifications, they told me, in not so many polite words, that I should never have remained on Tymlos as long as I had.

This should’ve been a sign.

Not a symptom.

My message to the clinic the next day was brief. It was sent to the doctor and the nurse practitioner and outlined the night before, along with asking what comes next.

The bounce back email let me know they were both out of the office, and then I could call if I had an emergency.

Two months later, I got on a video call with the nurse practitioner who said the doctor looked at my chart and recommended I get one dose of Reclast to “seal in” the effects of bone growth that I hopefully had gotten from Tymlos. She said the infusion could make you me feel “hungover” or flulike, and recommended that I hydrate extra two days before and two days afterwards.

She told me side effects should last two to three days, maybe a week.

Ten days at most if I was unlucky.

Stories like that have endings...

We’d just moved into this gigantic house in the suburbs a few months months prior, coming out here with only one plan - to fill it with little kids running around, the pitter patter of little feet down the hallway, and the constant echoing of a chorus of “Mom, Mom, Dad, Dad, Dad”.

At 6:30am, the hallway on the 24th floor of Northwestern’s Fertility and Reproductive Medicine department was still quiet in that particular way hospitals are before the day officially begins. The hallways were bright but hushed. Like everyone was hiding under their own cloud of secrecy and shame and stigma and repeat mantras of “I shouldn’t be here. I shouldn’t need be here. This isn’t how it’s supposed to feel.”

The waiting rooms were filled with people carrying invisible cargo: hope, fear, superstition, exhaustion. We checked in. We signed forms. We answered the same questions we had answered a dozen times before.

And yet that morning felt different.

Not because we had any guarantees. We knew better than that by then.

But because this pregnancy felt like the one.

The one that would finally stay.

The one that would finally let us stop calculating probabilities and timelines and loss percentages. The one that would allow us to step out of the strange suspended space of infertility and into the ordinary future everyone else seemed to inhabit without thinking.

We already knew there were would be two.

One boy.

One girl.

I remember carrying that knowledge around like a secret jewel. A matched set. A completed family. The symmetry of it felt almost too perfect to say aloud.

These babies would be ours.

Not embryos. Not possibilities. Not statistics.

Our son.

Our daughter.

We talked about them as though they were already on their way.

And in so many ways, they were.

Even now, five years later, I still see flashes of that morning. The paper gown. The procedure room. The careful choreography of medicine and science and hope. The monitor displaying tiny images that somehow managed to contain entire futures in minute little glimpses.

The snapshot images I have from the moment the babies were put back into my body.

I knew in theory there was probably something I could do to make this go around more or less useful, to make the most out of this time and this space with my mind, my heart, my body, my soul, but part of me didn’t want to get off that table even once I had the go ahead - because part of me believed that if I didn’t move, they wouldn’t either.

They’d find their place to rest; they’d nestle in, they’d plant proverbial roots, and they’d begin to grow a home in my uterus.

They’d grow placentas, and they’d start taking what they needed from me to become themselves. Each one of them unique and different, each one of them one hundred percent mine.

The transfer itself was quick.

The meaning of it was enormous.

What I remember most is not fear. It never was.

It was relief.

Relief that we had made it this far.

Relief that the waiting was almost over.

Relief that after years of trying, years of appointments, medications, procedures, ultrasounds, blood draws, injections, overflowing sharps containers, disappointments, and losses, we could finally allow ourselves to share in the believing that maybe, maybe we had the power to bring Brooklyn home a sibling.

We left the clinic that day carrying instructions and photographs and dreams, just like just like the five times beforehand.

I remember the air was warm - not humid like it was going to rain, or like there were distinct signs of summer ahead, just a warning that the tides were about to change.

We had the windows cracked in the car and I remember my hair blowing into my eyes as it mixed with tears - not sad tears, tears of relief. Tears we’d made it to this moment. Teas of naively believing that maybe, maybe this was where this was where the heartbreak ended.

For that moment, I was PUPO (Pregnant Until Proven Otherwise).

I don’t remember what we ate after we left the hospital. I know we didn’t stop at the Stan’s Donuts on the first floor - that was for regular mornings, or the mornings where it took the phlebotomists five attempts to get an IV in each hand to draw blood before my ultrasound. If I had to guess, it was probably McDonald’s fries if we’re being an honest because I’m addict to traditions and superstitions. #IYKYK

I don’t remember exactly what music played in the car, or what song I interrupted a thousand times I had a “what if” moment I urgently needed to share with Rick… but if I had to guess, it would’ve been “Rewrite the Stars” or “A Million Dreams” from the Greatest Showman Soundtrack - anthems on repeat that season.

But I remember the certainty.

I remember looking ahead and seeing a life that felt tangible.

The five of us.

I remember getting home mid day and sitting on the bean bag chair on the floor of my office talking on the phone in hushed voices with my friend Kate, the angel of a doula that helped our fast and furious Brooklyn come roaring into the world 4.5 weeks early just a little more than two years prior. She’d already moved out east by then and I knew i had a nosy toddler listening in tight to ask any questions she could, but I aksed Kate if there was any way she could still coach and mentor me through this pregnancy and delivery.

We were still in the height of the pandemic and neither of us knew what that meant for air travel or for extra visitors in hospital birthing suits, but my husband and I had agreed - having Kate on standby virtually was more calming to us than not having her at all.

If we could try to time the hopping on a plane thing. I remember talking about how when the twins were born (not if, but when), our family would be complete, and my gratitude would be held so tenderly by so many women who came before me and who walked alongside of me.

Today those sweet babies would be closing in on four and a half years old.

They’d have spent last week picking out backpacks and water bottles and swimsuits for kinder camp, a favorite around here, and they’d be preparing for the leap from their preschool friends to the circles they’d move through in their elementary school years. I can hear myself now - “Just because their twins, doesn’t mean they have to share everything. Only what they want. They don’t need the same teacher or classroom or friend group or extracurricular activates” I’d whisper to my husband while trying hard not to interrupt a fierce game of hide and seek between the three older kids.

[By this point, if the world worked as it was supposed to, baby Rowan would be here too, having arrived sometime around Thanksgiving or early December 2024, and fully toddling the picked up choice language from their big siblings even though they were just approaching 18 months old.]

One day we’d find Noah and Victoria mischievously sitting on the floor in front of a full length mirror at Target besides big sister Brooklyn, attempting to pick out matching kindergarten clothes without getting caught. I’d sneak past them as if I didn’t even see them there, strewn about in the middle of the aisle, and I could hear the sound of their giggles from several rows away.

Is this was happiness feels like?
Is this what life could felt like, even some of the time?

We’d spend our afternoons and evenings with the big kids, listening as they’d benignly argue over whose turn it was to choose the bedtime story that night. And even though I might still be just as tired, even though my body might still be just as fragile or broken, everything would still be different.

One of the twins would probably be fearless - my money’s on sweet Noah. The one who wouldn’t stay without his sister, even though she was already gone. The one who it the water first, cold and shocking, but who’s heart kept beating as I held him in my hand, reminding me that I gave him that life and that he tried his hardest to hold onto it.

The other might need a little extra reassurance. Victoria, I suppose, would be her mothers daughter - waiting for permission, encouragement, validation. Victoria who couldn’t leave even though she was already gone - because she just wasn’t ready to say goodbye.

Of this, I couldn’t be any more sure.

Call it instinct, call it mother’s intuition, call it living in my daydreams or in a foreign life, but it’s like I can visualize a scene that never even really occurred.

It’s hazy, but I still make it out, like a partial memory that never fully formed - Noah and Victoria running around, yelling about breakfast and their favorite colors and which stuffed animals were still only allowed to sleep in each of their beds, not to be shared with their siblings, not to get stuck on the couch, and definitely not get trapped in mom and dad’s rooms. They’d be just as full of light and love and curiosity and intelligence as their big sister, and being their mother would also be the love of my life.

I have to admit, it’s confusing to be able to visualize any of this, let alone all this in the same breath where I tell you that in the four months that I was pregnant with them, and in the nearly five years since they died, I have thought of a million other things but I have never ever been able to stop thinking about this.

In late 2024, more than three years after their passing, under the guide of Ketamine Assisted Psychotherapy, I saw something I’d never been given or gifted before. I saw our family - as it was supposed to be. Brooklyn was four and a half and plying near the Christmas tree, Noah and Victoria were close to three years old and playing tug a way with one of the santa hats they’d pulled off the mantle, and Rowan, brand new, was asleep in a carrier strapped to my chest. I’d never felt more at least or at peace than I did in that moment, and when medicine was over for the first time ever I resisted returning to the ground. I quite simply didn’t want to let go.

That was the very first time I had seen the babies outside of their moment of trauma. Outside of the moment I delivered them around 3.5 months gestation. They’ve stayed that size and in that exact formation in my head - frozen in time like the photographs I have of them since the moment I handed the tupperwear container to the receptionist at the Maternal Fetal Medicine office, and there didn’t seem to be anything I could do to change that.

I think for a long time my brain felt that letting go of that image, walking away from that grief portal - it would somehow lose them, and the tiniest of memories I did have with them.

But in staying there, my brain never let them grow along with where life would have taken them had they lived and breathed and stayed on this earth with us together.

Brooklyn wouldn’t be an only child.

She would be the big sister she was always meant to be.

Not in theory.

Not in the quiet, invisible way loss makes someone a sibling.

In the loud way.

The everyday way.

The “stop touching me” and “come play with me” way.

The three-kids-in-the-backseat way.

The three Christmas stockings way.

The three lunchboxes lined up on the counter way.

And I would be different, too.

Not because motherhood would suddenly be easy.

Not because illness would have disappeared.

I know enough now to know that life would still have found its way to me.

The diagnoses would have arrived.

The surgeries.

The medications.

The pain.

The uncertainty.

But the shape of my life would be different.

The logistics would be different.

The noise level would be different.

The memories would be different.

There are entire versions of myself that only existed because they didn’t survive.

This honesty feels heartbreaking to admit.

My daughter and my son had entire futures that disappeared before they had the chance to become a series of perfectly ordinary moments.

Five years later, that is what I feel most strongly.

Not just the loss of two babies.

The loss of a thousand ordinary Mondays.

The loss of kindergarten registration forms and soccer cleats and ballet shoes and sibling arguments.

The loss of knowing exactly who they would have become.

The loss of finding out who I would have been, too.

Then, in just ten short weeks, they’d take those brand-new school supplies and brand-new backpacks into their brand-new kindergarten classrooms.

And just like just like big sister Brooklyn did two years ago, they’d start their academic journey in just a clock-ticks time.

Five years ago today, we walked into a fertility clinic carrying all of the hope in the world.

Today I carry love.

It has nowhere obvious to go except in the tears that slide out of the corners of my eyes and down my cheeks silently. Except in the way other loss moms hand out hugs - with wholeness and meaning and brute force and sincerity;

This year Noah and Victoria will not give Rick and I kindergarten camper hugs.

They will not need us to tuck them into bed at four and a half years - because in truth, we’ve never gotten once had the honor of tucking them into bed, of dressing them in snugly jammies, of snuggling after bath time, of “one more story”… we missed all of those moments.

God, what I’d give for even just one night with each of them, right now, tonight, right at this age and this stage.

But that doesn’t for a second change the how deeply and fiercely my love for them remains.

That love is still here.

That love is still theirs.

That love is still mine.

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there was a system

there was a system
there was a system

and I didn’t know
how much of me
was built inside it

until the first night
i volunteered to chaperone 
40 kids
ages 6-11 
in a backstage "greenroom" 
during dress rehearsals
for my daughters 
elementary school musical. 

that night,
I stood in a room
where there wasn’t a system. 

Instantly, 
I was ten again. 

rental skates
too big
laces never tight enough

fluorescent lights
birthday party noise

and a migraine
that had been living
behind my eyes
for days

until it wasn’t

just gone

like my body
finally exhaled

like something inside me said

here

they said
cold air
endorphins
movement

but it wasn’t that

it was

I fit

for the first time

I fit inside myself

and then

I stayed

5am ice

breath visible
hair freezing at the edges

hands wrapped around
paper cups

trying to wake up

trying to be ready

and then again

after school

2 to 7

sometimes later

sometimes all weekend

sometimes all summer

dropped off in the morning
picked up at night

we had nothing

no money
no real plan

just time

and blades

and each other. 

patch sessions
private lessons
off-ice jumps in hallways

the sound of bodies
hitting the floor
and getting back up

again

again

again

dance classes
conditioning
cardio that burned

pool breaks
sun on our faces
wet hair on concrete

concession stand tables

drawing
writing
laughing

being kids

and also

not

because we were building something

even when we didn’t know
what it was yet

and then

ice show season

January
once a week

February
twice

March
more

April

your whole life
is choreography

Northbrook on Ice

Mother’s Day

my birthday

flowers in the morning
performances at night
tears before you even understand why

and the finale

the finale
the finale

it always started the same

the smallest bodies

the youngest ones

they’d come out

to their music

thirty seconds

a bow

shift

reset

make space

again

again

again

until all of us

every single one

had been seen

had taken our place

had been woven into it

and him

Cal

standing there

that megaphone in his hand

saving his voice

and still

somehow

holding all of ours

he saw it

before it existed

hundreds of us

students
coaches
staff

moving

reconfiguring

on a rink that wasn’t even 
a full sized rink anymore

bleachers
on three sides

box lights
cutting the edges

a curtain
stealing the back
space

gone

and still

it worked

because he did

because he held it

six shows

two dress rehearsals

Friday
Saturday
Sunday

six hours

sweatpants
hoodies
hair in sloppy buns

toes numb

laughing

still laughing

no one complained

no one

because we knew

this mattered

because we were held

and then
that night
a few weeks back,
in early May

a band room
forty kids
six to eleven

no plan

no one said
this is yours

no one said
here’s what they do

no one said
don’t let them touch that
don’t let them run
don’t let them eat here

so I said it

again

again

again

my body
keeping score

stairs
standing
pain

the exact thing
I said I couldn’t do

and still

no one was holding it

no system
no rhythm
no Cal

just noise
just waiting
just kids
with nowhere to go

and I kept thinking

this would never happen at the rink

this would never happen at the rink
this would never happen at the rink

not because it was perfect

it wasn’t

we were exhausted
pushed
overworked

but we were held

there was always someone
at the center
seeing it
before it happened

and I didn’t realize
how much of me
still lives there

until I felt
this
absence

this loud

because it’s not about skating

it’s about
what it feels like
to belong to something
that knows
where to put you
when to move you
how to hold you

even in a space
that doesn’t make sense

the rink did
when my house didn’t
and that’s the part
that still catches in my throat

I wanted to call them
tonight

I wanted to say
do you remember? 

do you remember
do you remember

how it worked
how he held it
how I fit there

but they can’t meet me there
not really
not like I need

so I’m here
holding it
again
like choreography
my body still knows

start with the little ones
bring them out
thirty seconds
a bow
shift
reset
make space

again
again
again

until everyone
has somewhere
to stand

until everyone
is seen

until it works
until it feels
like home

and I think
maybe that’s it

not just that I lived it
but that I still know
exactly
what it feels like
when something
is built
with care

with intention
with someone
strong enough
steady enough
brave enough
awear enough 
to hold it
all together

and how
my whole body
breaks
just a little
when I am the 
only one
doing the 
holding. 

I hesitated before publishing this one.

Not because it isn’t true,

but because it is.

I want to reassure the people who love me that I am safe, supported, actively receiving care, and continuing to fight very hard for my health and my future — even on the days where the emotional reality of this season feels impossible to articulate.

This piece was not written from a place of giving up.

It was written from the exhaustion of trying to survive something ongoing while still remaining honest about what that survival costs.

The word acceptance 
feels bitter in my mouth 
It burns my throat 
as I try over and over 
to swallow it down. 
But like reflux, 
or Mariah Carey 
on December 1st,
there’s no hiding it. 

To be honest, 
there’s not really 
any more space to hide
well...

Anything. 

Not this season, anyway. 

I do not like using spoons. 
I have a small shaped mouth
and they always seem to demand 
more space 
than I can offer them.
I hate the way the metal clinks 
against the inside of my teeth
and the way the tool itself
somehow makes me feel like 
I’m either 3 or 93 years old. 

In the last 17 years, 
I have deliberately 
not once chosen
to call myself 
a
Spoonie. 

The original story 
was creative and clever 
and it worked, 
but it was never the fit right for me 

Truthfully, I believed
even when there were
“no spoons” left, 
I still contained 
the grit 
and determination 
and indomitable will 
to push through and
to keep going

No
 Matter
What.

Today during therapy 
my mouth formed words
that my brain
had not yet processed. 

When I heard them 
for the first time, 
I recoiled, 
as if I had 
touched the stove 
but forgotten  
to turn the burner off 
after I finished cooking dinner.

Since childhood
I have made sense
of the world
of my body
of my life
through words.

I have journaled,
I have published 
long running blog sites, 
I have written and contributed to
so many articles living across the ether 

And most of them 
come back 
to the 
exact
same  
places. 

Stigma. Shame. Self-doubt.
Challenges. Changes.
Grief. Loss. Rebuilding.
Searching for purpose.
Living the heavy and the light.
Believing in the both/and. 

I’ve written about my health, 
diagnostic odysseys 
with too many wrong turns, 
fighting to be heard 
inside systems that 
were never built to cater to patients, 
institutions that do not lean in 
when you need them to the most..
Being dismissed instead of re-examined,
Being talked about instead of talked to,
Always treated as an inconvenience 
rather than an opportunity. 

I’ve written about 
our struggles with infertility, 
What it’s like 
to have a very early miscarriage,
To undergo round after round after round
of in vitro fertilization,
To have embryo transfers fail,
To have a successful pregnancy, 
but live with hyperemesis 
for 35 weeks and 5 days. 

I’ve shared what it’s like 
to deliver twins 
at home
at the beginning 
of the second trimester, 
with one baby still alive
as you held him 
in the palm of your hand

And what it looks like to 
disassociate 
and then 
to fall completely apart 
afterwards.

I’ve written about 
my experience with 
ruptured ectopic pregnancy, 
emergency, life-saving surgery 
and the devastating, medically necessary hysterectomy that followed.

I’ve shared everything online 
that society has told me 
should remain a secret.

I do not believe in stigma.
I do not believe in silencing ourselves.
I do believe that 
every part of our story 
has the potential
to help someone else
survive the part of theirs
that right now,
at this very moment,
feels absolutely impossible.

Today I told my therapist
I feel like I have run out of words 
to describe the physical pain
I have been living in for 11 months now.

She asked what that meant to me. 

It means... 
that we are beyond a place 
where my brain knows how to process
or make sense of
what I am experiencing
in relation to the people surrounding me,
The moments I am living through, 
and the life I am trying, 
desperately trying, 
to save. 

It means 
being unable to 
quantify how this season, 
how CRPS specifically, 
and how CRPS
in combination with 
active Crohn’s disease 

along with a diagnostic list
that somehow now
takes up
an entire page

has made it impossible -
I no longer understand
how to rank pain.

How to classify it.
Explain it.
Contain it.

How to make sense
of multiple kinds of suffering
all screaming
for separate attention
inside the same body.

It makes me feel isolated
in a situation that 
has already become 
wildly unbearable.

It makes me wonder 
how to metabolize 
and how to release 
the trauma my body is holding 
when the molecules are so damn small
and they are already hiding behind 
the few cells in my body   
occasionally still functioning -

this is apparent
in every single location I 
go searching inside. 

I try to open up.
To breathe in light,
To breathe in peace.

And the only place
I have been able to attempt
to temporarily slip back
into 
my body
has been under the guise
of psychedelic medication 
used to treat PTSD. 

For 45 minutes
once every three weeks
I know there is 
a tiny exhale 
awaiting. 

I have learned set and setting
I have learned the medicine
I have learned my body
And most importantly, 
my brain has been willing
to show up and participate too. 

Some sessions
feel more chaotic than others
Some sessions
still feel like
they would move 
the proverbial needle
further and faster
if there was a guide walking beside me

But I can also tell you
that I am damn proud
of what I have become able to do
all on my own. 

In that letting go, 
in this one tiny space,
with appropriate guard rails secured, 
this treatment
has given me something 
that I have never felt before.

I didn’t know that it was possible
to cry in the middle 
of a ketamine session,
despite having headphones in, 
a playlist on, 
and eyeshades covering my face, 
leaving me alone in the total darkness...

But just like
the concept of float tanks,
the combination of sensory deprivation,
medication that offers psychological distance,
and the willingness 
to do the work -
both before and after each session, 
these appointments are just the beginning.

They are re-creating the foundation 
so that I can rebuild

given that 
all of the variables 
have changed

given that
all 
of the rules
have changed

given that
every day 
is a new type of 
unpredictable

And no version of 
unpredictable
in my experience
has been safe, 
or warm, 
or something 
to embrace.

When I returned to 
Ketamine therapy in April
after nearly 9 months
without it,
I wasn’t sure what I would find
I wasn’t sure if my intention was enough
I wasn’t sure if I could find 
safety inside of myself

What happened was bigger 
than I could’ve imagined. 
For the first time, maybe ever, 
I heard my body say
“come home, baby, it’s over...” 

And you best believe I wept -
but not out of sadness or devastation…
out of relief.
out of reunification.
out of allowing myself
to trust my own instincts
without outsourcing my decision
or my interpretation 
of my own thoughts

I reached that moment 
entirely on my own - 
Which meant 
it was real 
in every way

And it has become the mantra 
I have held tightest to
when it is 3 AM 
and I am staring at the ceiling
because I do not have the right meds 
to make me fall and stay asleep
because I do not have the right meds 
to reduce the pain that is ravaging my body
because I do not know how to stop 
thinking about fleeing my body entirely

That’s always been 
my textbook strategy.

Brace for impact,
Or bolt.

Staying has always been 
equivalent to pain. 

That external narrative was written
before I even became a teenager.

That my body was not safe,
That my body could not keep me safe,
That my body was holding a gun to me
At all times
Fully loaded

And I never had 
the opportunity 
to duck for cover
or the foresight to know
when it was going to go off.

I’ve spent my life
doing what has felt like damage control
as my body has hazed me
every single time I’ve tried 
to step back into my life

Another injury
Another illness
Another surgery
Another complication
Another diagnosis
Another medication
Another reaction
Another trauma
Another loss

And they’ve just kept stacking. 

So acceptance,
My first question.. 
Is why?

Why should I?

Because in the theory 
of psychosocial development, 
brain and body and soul 
must be on the same page 
and fully aligned to heal? 

Do you realize 
that my giving into acceptance 
feels synonymous with 
giving up everything I’ve fought for
my entire life?

Don’t get me wrong,
I think the idea is great.

I’d love to be all woo woo and shit

But can you really look at my life
At my body, 
At what I’ve endured, 
At what I’ve had to come to peace with, 
At what I’ve experienced, but will never come to peace with, 

I mean, even the sheer fact
That I’ve spent the last 11 months
In excruciating, incapacitating pain
But not bed bound, 
Not in the hospital,
Still desperately trying 
every
single
damn
day 
to actually live 
to work
to parent
to find laughter 
to believe in a reason...

And so no one is in any hurry 
to find me
temporary support 
or permanent relief?

My last good night of sleep
was more than a year ago

At least six months 
of the time since then
has been filled 
by all-nighters, 
or periods between dusk and dawn
where I’ve dozed for 2-3 hours at most? 
Nights where I wake 
every 30 minutes by terrors, 
or from pain so bad I physically 
try to crawl out of my own skin.

Some nights
the pain becomes 
so consuming
I understand
why people beg
to escape their own bodies.

Some nights,
if I am telling the truth,

I have legitimately contemplated
home amputation.

I have 31 unread text messages
waiting for me on my phone
and 78 emails
sitting in my personal inbox.
My to-do list is multiple columns long
and very few items have been crossed off 
in the last several weeks combined.

I’m mortified
I’m out of fucks
There’s just simply no energy left
At all
Not even an ounce 
To care

It’s not at all for lack of effort
Or lack of desire.

It’s simply because 
there is 
just 
no
remaining 
reserve. 

I hate spoons, 
but if we’re gonna talk about them
Let’s be real. 

At 18 years old, 
I probably had a 
full serving set for 12. 

At 24, I was likely down to 8
Although at the time, I have no doubt I would’ve told you it was closer to 4-6. 

By the time 
Crohn’s disease 
went into remission,
I delivered our baby girl, 
I turned 33, 
I probably had 11 spoons 
back in the silverware drawer
that year
and damn, I was grateful. 

At 36, 10 months after
Noah & Victoria died,
Four months after 
a diagnosis of adrenal insufficiency, 
we were probably hovering  
around 9 clean spoons
with maybe an extra lodged under 
the silverware rack 
at the bottom of the dishwasher.

In the fall of my 38th year, 
after experiencing 
FOUR emergency surgeries 
in just over two years, 
after a ruptured ectopic pregnancy
we were told wasn’t even feasible
after fighting for my life 
when postpartum depression 
came knocking at my door, 
there were like 
maayybbeee 6 spoons available - 
and this time 
I’ll agree with that number.

Then there was 
one more urgent surgery, 
shortly before I turned 39. 
There were relationships 
that ruptured, 
redefining my life, 
while there was also 
a beautiful 
reclamation 
of motherhood, 
which I will
choose to relive 
over and over again 
as some of my favorite memories,

And then there was the day
that changed all the rest.

The day I walked into
Niles Infusion Center
and signed a consent form
giving a nurse permission
to connect my port
to an IV pole
and administer what was
only ever going to be 
A ONE TIME DOSE 
of an osteoporosis medication 
called Reclast.

14 hours later
It was like a thief 
had ransacked my kitchen.
There were no spoons.
There were no forks. 
There weren’t even any knives. 

For three months
I begged, borrowed, and 
literally contemplated stealing (knowledge, resources, connections, medical licenses), 
praying that someone 
had an answer 
or a way to make the pain stop.

In the fall 
when the leaves 
fell off the trees, 
I thought about 
falling out of my body
But like, 
Permanently. 

Then there were the words 
Complex Regional Pain Syndrome (CRPS)

Followed days later by evidence of 
active Crohn’s disease
For the first time
In almost 9 years.

So, for the last eight months,
I’ve lived in a world 
that’s impossible to describe
and frankly, 
even if I could find the words,
I don’t think anybody 
would want to hear them
anymore.

Rightfully so, 
no one wants to know
when their friends are suffering
but they can’t do anything about it.

We as a society
have not reached a place
where we understand how to
simply sit beside each other
within pain
within grief
within loss
within challenge or change or hurt 
or helplessness or desperation or fear..
or even hope. 

So today
when I felt like I ran out of words
I felt like I took myself
out of the population at large. 

I felt like I increased
my own isolation. 

I felt a level of devastation
so much heavier
so much more intense
and so much harder to overcome
than maybe anything I’ve known before

And if you know me
or you’ve been reading for a while,
I think that gives you some context
on where I stand right now.

So here’s the blanket statement

I never imagined 
I would say out loud.

I am mortified 
to admit this -
But I’m fairly certain 
my backs against the wall 
and I’ve got no more plays 
to run. 

I cannot keep pretending
I can rearrange myself
into someone capable
of surviving this
the way I used to survive everything else.

Honestly, I thought I still had time 
to move things around 
in a way that could change this… 

But the longer I wait,
the more pressure I put on myself, 
the more unbearable it feels
to let others down
to let myself down
and to be anything other than 
the person I had grown into 
before Reclast happened
both feels like
an absolute and utter failure
and a truth 
I’ve spent 11 months
begging the universe 
to erase or
to undo or
to let me turn back time
just this once. 

I cannot be 
everything to everyone, 
despite the desperate 
desire that raised me 
from the time
I was a little girl. 

I have tried 
nearly all of my life
to be the person
who answers the phone
at 2 AM, 
to pick up friends
as a sober driver,
to sit with friends
who didn’t know
if they were safe enough
to make it through the night
to be present
when grief and loss
were large and heavy and hurtful.

But right now, today,
I can barely take care of myself.

Whatever strength and energy
I have beyond that
must go first and foremost 
to my daughter, 
because she deserves 100% of me 
and of the energy I AM able to give her.

To me, it will never feel 
like enough. 

It will never be enough.

It will always fall short of 
MY expectations.
MY dreams.
Everything I wanted for her 
before she was real
before I grew her 
before she was ours.

And all I can do is hope 
that she will string together 
the memories we are making 
right now 
and that those smiles 
will fill in the 
missing gaps of my absence
for her as she ages. 

Whatever is left after that,
no matter how you slice it, 
is far too small a piece to 
leave imprints across the world
on the hearts of my friends 
and the causes that matter to me 
and all of the things 
I used to dream about. 

That remaining slice -
It’s what my husband gets. 
It’s what my boss gets.
And that’s what my sanity gets…
in the event there’s even anything left for that. 

I want more than anything 
to invest in you -
in the friends that have lifted me up 
and cheered me on 
and supported me.

Friends who have sent me threads 
and cards and packages, 
who have held my hand
AND my heart
and my phone in the dark.

And this is the part
I need you to hear...

I am also giving you full permission 
to be disappointed 
and angry 
and sad 
and hurt 
that I am not the Amanda 
that you first met.
That I can’t keep up 
with her standards.
That I can’t show up for 
you the way she did.
That I can’t reply to your texts
or listen to your voice memos
the same hour 
or the same day 
or sometimes even the same week 
that you leave them. 

If it makes you feel any better
I am also heartbroken
that I can’t be that version
of Amanda either.

I have spent every minute 
of the last year 
waiting for her to return...
and this bullshit about acceptance
is realizing that 
there just are no more spoons. 

There’s no place 
to dig deeper 
to find 
“more grit”
Or 
“more willpower” 

There is no knight in shining armor
No doctor with a miracle
No straightforward answer
No cure
Right now, 
There’s not even 
a valid treatment plan
for today 
for this month 
for this season 

And in order for me 
to build a bridge 
to stay... 

I have to conserve
the minuscule amount
of energy
of stamina
of fight
that I still have
in order to
even try to 
believe there’s a chance
that I can get
to the other side

In whatever that looks like

That I have a chance
to watch my daughter
grow up
to watch her
fall in love
to watch her
graduate
to watch her
fulfill her dreams
to watch her
become 
everything I know 
she is capable 
of becoming. 

I am so so sorry
To all of you... 

And in honest truth, 
I am so sorry
for me, too. 

I kept believing
there was another drawer, 
somewhere.

Another reserve.
Another hidden version of myself
that could survive
through sheer force of will.

But acceptance,
I guess,
is trying to  
understand

the kitchen 
is 
actually
empty

And I have no other choice
than to stay here 
and try to learn
how to make existing
feel tolerable
anyway. 

Tonight at 6pm, while the curtain rises on your very first school musical performance, I know part of me will split cleanly in two.

One version will be sitting in a high school auditorium watching you walk onto a stage as an enchanted object — a magical little teacup, with bright eyes and a smile that melts my heart, and jazz hands bigger than your whole body.

And the other version of me?

She’ll be transported instantly back to another 6pm.
Another May 8th.
Another version of us.

The very last day you were still tucked safely inside of me.

Seven years ago tonight, I was laying on the gray couch in our brand new townhouse when, completely out of nowhere, my water spontaneously broke.

No dramatic movie scene.

No warning.

No panic.

Just this surreal moment where the entire trajectory of my life quietly shifted while Vanderpump Rules played in the background.

You were 35 weeks and 4 days gestation, already impatient, already unwilling to miss out on whatever was happening outside of me.

Honestly?

The most on-brand thing you’ve ever done.

We went to the hospital thinking we had time.

The doctors told they’d push medicine to advance labor in the morning. They recommended we eat and rest.

We called our parents with an update, to say goodnight, and to tell them we’d send an update in the morning.

Then we texted our friends the Spotify link to “No Sleep Till Brooklyn,” laughing through the disbelief that you were actually coming.

Early.

Unexpectedly.

Miraculously.

I remember thinking we’d settle in for a long night. Maybe try to sleep. Maybe things would really start moving by morning.

But you had other plans.

Of course you did.

Less than fourteen hours later, you arrived screaming and perfect and impossibly beautiful, and I swear the entire room changed shape the second I saw you. The air itself felt different. Like the world had cracked open to make space for you.

And now somehow — impossibly — that tiny premature baby who fit against my chest so perfectly is old enough to walk onto a stage beneath bright lights in costume and makeup and perform in a musical.

A musical.

You, who have spent your entire life enchanting every single person lucky enough to know you.

Truthfully, there could not be a more fitting role for you than a magical teacup. Something tiny and sparkling and impossible not to adore. Something warm. Something alive with wonder.

I keep thinking tonight about the strange brutality of time. How motherhood feels like simultaneously begging time to slow down while desperately wanting to witness every version of your child becoming who they are meant to be.

Because if I’m honest, I would give anything — absolutely anything — to return to that night.

To sit on that couch one more time.
To feel the shock rush through my body.
To realize you were coming.
To know I was only hours away from meeting you.

Not because I would change anything.

I wouldn’t, for the record.

Not one single thing.

But because there are certain moments in life so sacred, so transformative, that your body never stops aching for them once they’ve passed.

And meeting you was the holiest moment I have ever lived through.

Tonight, when the curtain rises and I see your face under those stage lights, I know I’ll cry.

Not just because you’re growing up. Not just because you’re brave and funny and radiant and so deeply yourself and I’m unbelievably proud of you.

But because somewhere inside of me, I am deeply wishing that I were still that woman on the couch - still waiting for your arrival, still on the verge of meeting the greatest love of my life.

So so very much has happened since then.

So much has threatened to tear us apart.

But today, sweet girl, I know there’s something here that wasn't here before. 💕

before she was anything 
you could hold

she was wishes 
made on 
every star
every candle
every birthday cake
every penny thrown into a fountain

she was numbers

decisions
made in quiet rooms
with fluorescent lights
and careful voices

she was questions 

begging for reassurance
answers 
advice
how
just tell us 
why
when
what else we could do? 

she was once 
measured by 
the number of 
injections 
rammed into my behind 

morning
night
again
and again

counted in bruises
in breath held
in don’t flinch

she was once
measured in cells

the days of growth
and division

counted, 
whispered about, 
handled in gloves and hope

the silent prayers 
that science 
could give us
what biology 
refused.

she was once
small enough
to live inside a lab
inside a line of possibility
inside a catheter
threaded into me
like a question

I carried her
before I carried her

in numbers
in timelines
in cycles

Cycle 2

Transfer Day

9-20-2018

before she had weight
before she had form

she had a date

and I held it
like everything

one day
shortly after 
her surprise 
early arrival, 
it was impossible 
not to notice 
that somehow 
all of her 
fit
inside 
the crook 
of my arm

elbow
to wrist

that was it
that was all of her

a brand new life
contained

in a space
I never noticed
before

overnight

everything changed

preemie diapers
folded over themselves

smaller than a soda can
like something you’d laugh at
if it wasn’t
your baby

if it wasn’t
your whole heart
wrapped in plastic tabs

and now

in nine days

…just nine days

she will turn seven

still a peanut
still mine

but she stands
almost to my chest now

like she’s been quietly growing
while I was busy
remembering
how small she used to be

she reads me
like a book I didn’t finish writing

asks questions
that land too deep
for someone so little

feels everything,
everyone.

a tiny empath
with no off switch

a giant heart
in a still-growing body

i have never had
the honor,
the pleasure,
the awareness
of bearing witness
to someone
becoming.

starting as

a dream
an idea
a hope
a prayer

a clump of cells
a tiny dot
on an ultrasound screen

the faint
thump thump
of a heart
beating
inside of me

then

an infant

pressed against my chest
100% reliant

on my body
to feed her
to clothe her
to soothe her
to regulate her

now

nearing seven

an adult
in a child’s body

hysterical
funny as hell
funnier than me

and also

too hard on herself

and I see it.

recognize it.

i know exactly
where it came from.

even if she hasn’t
watched it happen
in real time

she is
in every way
her mother’s daughter.

we talk about
real things

always have

bite-sized truths
not watered down
just - 
made to fit.

she knows
about her siblings - 

three,
in heaven.

she loves them,
like they were here.

she knows
I am overprotective,

that I get scared
too fast
too often

that keeping her 
safe
is my
number
one
job

first, 
because I'm
her mother. 

but also,
because I couldn’t
keep them alive.

we talk about

big feelings
feelings doctors
feelings work

she understands

run
hide
fight

at school
and outside of it

why we don’t buy
light up shoes

why we listen
when adults say

move
stay still
be quiet

because sometimes
that’s the difference
between safe and unsafe

[which is to say
life 
and
death...
but 
to
someone
who is
just finishing
year six]

the world is scary
and it would break me
if anything
ever
happened
to her

but please,
don't
assume
I've
let her
understand
that. 

she can tell you
about the port
in my chest

or the disease,
by name,
that changed my life
before I met
her father,
when she was 
just 
a 
dream. 

and she knows 
intimately
about the
medication,
by name,
that broke me 
last summer,

the reason
everything hurts,
I move slower,

I can’t do
what I used to

sometimes

anything at all

she knows
because
it helps her
understand

i don’t hold back
from lack
of desire

but because
in this house
honesty
is the only
trump card

because
we believe
empathy
can’t be taught

only lived

and because
we know
she will be
better for it
in the long run

when she cries
sometimes,
I cry too

and we let that be.

we are tied
in a way
no one else is

because she is
the only person
still here
who has heard
my heart
from the inside
and out

at night
while she falls asleep,
I place my hand
over her heart

the same way
I held her
against me

when she was brand new.

I can still
regulate her

the difference is

now

she regulates me

too - 

she just

doesn’t know it. 

when I tell her

"you are the light
and the love
of my life"

I mean it
in a way that has weight

in a way that has history

in a way that remembers
test tubes
and timelines
and almosts

and honestly, 

I have never

been more serious

about anything,

ever. 

[April 2026

To my tiny bestie.

I waited my whole life to know you.

Everyday I strive to give you all I’ve got - even when that’s so much less than I’d like it to be. I am unbelievably, embarrassingly proud of every single part of who you are becoming - from your big blue eyes all the way down to those wriggly toes. You are smart and creative and a barrel of laughs, you are kind and compassionate and empathetic, nurturing and supportive and a “bucket filler,” you are brave and courageous and strong, you are passionate and artistic and soulful and investigative and persistent and you love with your whole heart.

You deserve the world, B. Every moment that you reach for I’ll be cheering you on, no matter where I am - never forget, I’ve got you.

I carry your heart, I carry it in my heart.

Love

Mom]

Twenty years.
Twenty million moments.

Some of them soft. 
Some of them sharp.

Moments that should have broken me.
Some of them did.
Some of them are still horrifying. 
Some still knock the wind out of me. 
Some I still can't fully remember. 
Just the feeling of 
being
unsafe. 

Moments that split my life into before and after—
before I understood 
what it meant 
to fight for my life,
and after I realized 
I didn’t get to 
opt out.

The best days.
The unbearable ones.
The ones where breathing 
felt 
like a decision, 
not 
a reflex.

And somehow—
I am still here to count them.

Not by chance.
& certiantly not because 
it was easy. 

Because of To Write Love on Her Arms.
Because one person told the truth
when it would have been 
so 
much 
easier 
to disappear.

Because of Renee.

Let me be clear - 
I would not have a story without hers.

There is no version of me
who made it through
without the blueprint 
she laid down
in the middle 
of her own 
unraveling.

Renee didn't just stay.

She chose to stay 
out loud, 
publicly, 
amongst others
instead of alone,
behind closed doors,
even though 
everything in her life 
gave her permission not to.

She stayed 
when it hurt like hell.
When it was terrifying.
When it was messy. 
When it was uncertain 
and unfinished 
and far from 
inspiring.

She stayed when staying didn't look brave - 
it looked desperate.
it looked exhausting.
it looked like one more breath
she wasn't sure she had in her.

And still - 
She took it. 

And then she didn't just choose 
to let her story be told -
she released it.
She let it become 
something bigger than her.
Something that could hold the rest of us 
when we didn't know how to hold ourselves.

That kind of bravery?

It's not curated.
It's not convenient. 
It's not something 
you can rehearse your way into.

It's earned
in the dark. 

It's the kind 
you only recognize 
after you've survived 
something
you weren't sure 
you would.

It's choosing - 
in the most private, 
unglamorous, 
invisible moments - 
not to disappear.

And because she made that choice,
because she let the truth get set on fire, 
let it spread 
like flickering flames of fear and dreams, 
of despair and hope, 
she let the world see 
what it actually looks like,
in real time,
to be on the edge
and 
not
jump.

I met this story early. 
Two years after it went live on Myspace. 
It was 2008,
and I had just witnessed 
the unthinkable.

My friend, 
wheeled out of our house, 
in a body bag. 

Police, 
searching our rooms
for a weapon, 
because there was 
no 
note. 

Our house mom, 
trying desperately 
to reach her parents, 
because 
legally, 
ethically, 
family
had to be alerted 
first, 
before her name
could leave our mouths 
outside 
of 
the 
house.

107 other college aged women
sat clustered at round tables 
scattered in our dining hall 
for hours - 
silent, 
crying, 
terrified, 
devastated, 
shocked, 
frozen. 

It was 5 weeks 
before graduation.

None of us knew 
how to stand up
and 
walk 
out of that room. 

How the hell
were we supposed to 
move 
forward? 

How the hell
were we supposed to
move 
at all? 

I met TWLOHA 
at a moment where it became 
part of the foundation 
of who I was becoming - 
not just as a person, 
but as a partner as well. 

From then on,
I carried TWLOHA's message 
and their mission 
into every room I entered, 
I shared it
with every friend 
that struggled, 
I clung to the words 
of each new Myspace post
as I kept trying
to find my footing
on a ground
that refused to lay
flat. 

In 2016, TWLOHA celebrated 
10 years in Orlando, FL
at their flagship event, Heavy and Light. 

Rick and I -
two people
who only knew one another
because of TWLOHA, 
because of Renee, 
walked into the House of Blues
together, 
hand in hand. 

We were still early in "us" - 
new love, 
new promises
no idea what 
"for better or worse" 
would actually demand, 
but knowing
what we felt
was worth risking
everything
for. 

We thought we were showing up that night for a story.

We didn't know
we were stepping into 
a survival guide. 

Because everything that came after -
every. single. thing. 
that we've been asked to carry
in the 10 years 
since that night
would ask us 
the same question
on repeat: 

Are you going to stay? 

We buried people we love.

We've lived in the hospital for weeks at a time 
on so many separate occasions. 

We started focusing
on collecting hearts 
that beat like ours, 
creating community, 
remembering that
family
doesn't 
require
a shared
bloodline. 

We fought like hell 
for babies 
we both so desperately wanted. 

We stumbled through  
infertility 
as it stripped us down 
to 
literally 
nothing. 

We redefined intimacy
with no roadmap
too much input 
a list of rules
and a lot of precaution -
and being together
started to feel
like 
something
different
all-together. 

We had to fight for that,
you know? 
We had to decide
to choose us, 
our connection,
our emotional ties, 
our fears and our dreams
and build something 
that couldn't interrupt 
"the process" we were 
painstakingly
walking
through.

In that season,
we announced
to our doctors, 
to our friends,
and to the world,
that we 
flat 
out
refused
to
ignore 
or abandon
the tethers 
that made us  
who we had chosen
to become,
together. 

Despite following
every step,
every rule,
every timeline, 
we found ourselves 
on quite the difficult pathway. 

Both before 
and 
after
my pregnancy
with our 
living daughter, 
we experienced 
miscarriages - 
moments that taught us 
how quickly 
something can be both
real
and 
gone.

But in 2018,
during my 
32nd year around the sun,  
my body
and the universe
conspired, together, 
for the first time in my life,
to gift me 
the thing
I have wanted most
since the day 
I learned how to wish. 

We got our miracle - 
our daughter Brooklyn, 
now in the first grade, 
who has been, 
since the moment 
she was conceived 
via IVF,
a"Living, Breathing, Screaming Invitation 
to Believe in Better Things." 

She is the greatest reminder
that joy can still exist -
even after you stop believing in it. 

And still... 

On the worst day, 
Noah and Victoria 
were born
too early 
to 
survive.

I left my body 
sitting on our bathroom floor
for nearly six months
as I walked around
without it, 
present, 
but empty, 
pretending
that I could parent 
the living 
and the dead
at the same time. 

Nobody warns you
what it feels like
to hold 
the smallest urn 
you've ever seen
and know 
that it holds the bodies 
of your children. 

Of the son 
and the daughter 
that you will never 
get to rock to sleep,
the twins that 
will never 
be dressed 
in matching outfits, 
the babies
that will never 
come up with
hopes and dreams 
of their own. 

And then, 
without warning,
we learned about 
and lost Rowan
in the span of hours.

A baby that we were told 
was impossible 
to conceive. 

A baby who implanted
just two inches 
too high. 
And tried to grow
in a place 
too small,
a place
meant only as a passageway, 
where organ walls stretched and thinned 
trying so hard
to accommodate them,
until there was 
nothing left. 

When my fallopian tube ruptured, 
it released the mounting pressure, 
it displaced the baby,
and it triggered enough blood loss
to nearly drown me. 

Although Rowan's heart 
was still beating
at the start
of the emergency surgery
I had at 2am,  
mine came
dangerously
close
to 
stopping. 

& Most recently, 
there was the moment
that changed
all the rest of the moments. 

The one 
I just don't yet have
the words 
to share. 

Since then, 
since that moment, 
since that memory that only I hold, 
the darkness hasn't been poetic - 
it's been paralyzing. 

The body remembers
too damn well. 

The flashbacks 
seem to stay on a loop
reminding me
that even the most 
basic of functions
my body
is supposed to perform
aren't guaranteed - 
today, 
or any day, 
really. 

There have been
days where my body 
has been
in 
so 
much 
pain 
I haven't recognized it 
as 
mine. 

Seasons where 
I wasn't living - 
just existing 
long enough
to see 
if I could make it
to the next hour. 

Where breathing 
felt optional. 

Pain - physical, 
emotional, 
all consuming pain
continues to make me question
how much longer
a body,
a mind,
a person
can actually
endure. 

I have lived inside the question: 
How much longer can I do this? 

... for far longer than I'd like to admit... 

But if admitting it
means
I'm giving someone else
the gift
Renee
gave 
all 
of 
us... 

I'll never
stop 
talking 
about 
it.

Renee didn't give us a perfect story.

She gave us a real one. 

The kind where staying
doesn't look triumphant - 
it looks like 
shaking hands,
silent prayers
one more breath
you're not sure you have. 

Sometimes, 
it's invisible.
But it's there. 

Renee taught us it is always going to be there. 

The kind where 
the strength
required 
isn't loud - 
it's 
relentless. 

Where you learn 
that you can hold 
unbearable grief
and 
unimaginable love
in the exact same body
at the exact same time. 

I learned that from her.

She stayed
when she didn't have to.

And because she did - 

I stayed. 

Through the whispers,
the ghosts,
the nights that felt endless,
and the mornings
that felt undeserved. 

I stayed to see what would happen. 

I stayed long enough 
to fall in love
deeper
than I knew I could. 

I stayed long enough
to become a mother. 

I stayed long enough 
to grieve the children 
I'll never raise, 
to say their names 
and honor their stories,
and to show up,
with my whole heart, 
for the one I get to watch grow up. 

& Wow 
does that 
happen
fast. 

This season alone, 
I have continued to stay - 
honestly some days
having to choose
it on repeat. 

Sometimes it's had to be 
a conscious choice.

Sometimes it's needed
to come with
a written list
of 
pros 
and 
cons.

And the choice?
It always seems to detail
pain that doesn't make sense,
nights that don't seem to end
and the agony
of living inside a body
that keeps asking 
more of me
than I am capable 
of giving.

I have stayed, 
even when I didn't know if I wanted to. 

Because Renee showed me 
that wanting to leave
and choosing to stay
can exist
in
the 
same 
breath.

That sometimes staying
is the bravest,
most violent,
most sacred choice
you will ever make,
and sometimes,
you have to make that choice
over and over and over again. 

But that choice - 
that brutal
sacred
defiant 
choice - 

Is what gives you a life. 
Is what gives you love. 

Is what gives you a story at all.

February 24, 2026
marked 20 years of TWLOHA.

Of the 5 days
Renee spent
caught
between hurricane
and harbor,

both claiming
they could save her.

Ironically,
February 24th
is the day
Noah and Victoria
were due.

This year,
they would have turned four.

Just like every year before,
we bought them cupcakes. 

each filled 
with four lit candles, 

and sang
happy birthday.

The three of us,
staring at each other,
lost
in the quiet ache
of what life
would have been like
had it unfolded
the way we thought
it would.

On a day
my heart
ached
in a way
I still don’t have language for,

Renee reunited
with Jamie. 

and together,
they showed up.

They created community.

Again. 

They choose to invite people in, 
eight to ten at a time - 
into online zoom rooms,
small circles,
small, honest conversations
in a series 
called
BYGONES.

Had Jamie never
published Renee’s story,

they likely would have
still been friends - 
for some unknown length,
some unknown depth.

But there would be
no TWLOHA.

And without it, 

if I’m honest, 

I don’t know
if I would have chosen to stay
every single time
I was overcome 
with the urge 
to leave. 

I'm not sure,
if I would have made it
to the moment
Rick and I met - 

a moment
that only existed
because of TWLOHA.

Without TWLOHA,
there would be
no Brooklyn.
& no babies in heaven.

Our entire family
would have such 
different 
stories,
it would be 
unrecognizable. 

Without TWLOHA,
there would almost certainly be nothing
that even resembled
Heart Camp,

or the Framily
that has moved
in and out of our lives
over the last eight years.

Without TWLOHA, 
there would be
no threads to hold,
no flashlights 
in the dark,
and no tears shared across FaceTime. 

There likely wouldn't be friends
holding their phone
in the palm of their hand, 
in the middle of the night, 
dark screen, no sound,  
just waiting,
just in case 
a message came through. 

Just in case
somebody 
needed 
them. 

There would be no one choosing
to drive six hours
with a potty-training toddler
just to show up, 
to be present

to remind each other

that love
is more than four letters.

That love
is the movement
that saves
us
all.

So here’s
to the next twenty. 

of TWLOHA
for Renee, and Jamie, 
for Rick and Brooklyn and I, 
and for all of you. 

May we continue
to have time
to be surprised,
to hold onto
the ones
who feel like magic,

to learn
everything
about ourselves

while we are
still
becoming.

May we be lucky enough 
to watch
our babies
grow - 
into teenagers,
into young adults,
into people
with stories
of their own.

May we remind them
to look for the stars - 
the ones
that are always there,
even
when you cannot
see them.

And may we hold
each other
for as long
as we possibly can, 
because this life
was never meant
to be done
alone.

I am writing this from a hotel room
with an IV pole dripping quietly beside me
like this is normal.

Like this is a life someone would choose.

My daughter is asleep beside me. 
Her body knows how to rest.
Mine doesn’t remember how.

Those things are true.
But they don’t feel connected
to the part of me that is trying to form sentences.

There are 46 days
between me 
and my fortieth birthday. 

I keep returning to that number,
like it means something. 
Like it's a measurement I can understand. 

But it doesn't translate. 

It doesn't tell me 
how I am supposed to get there
from here.

There is no map
for this version of a body. 

No instructions 
for what to do
when survival doesn't feel like returning - 

it feels like being abstractly placed 
somewhere adjacent to yourself
In both time and space, 
trying to gather
feelings and fears 
and flickers of faith,
faking the fluency 
of who you used to be.

Two months ago
my body stopped completely. 

And I keep trying to write about that
like it was an event. 

Like it has edges. 

But it doesn't 

That's a lie. 

It's still happening. 

Not in the same way
But in the way 
my body exists 
now. 
as if 
that moment 
never 
fully 
ended.

Like something is still paused,
mid-collapse. 

Like my system is still waiting 
for the rest of it to finish. 
To be completed. 
To come home. 

I don't know how to explain this
without it sounding abstract
but it isn’t abstract when you're inside it.

It's physical. 
Somatic. 

The feeling of not fully landing
in your own body. 

Your breath not quite reaching
the bottom of your lungs. 

Your limbs, belonging to you, 
in theory,
but not in certainty. 

There are moments 
where I try to come back. 

Where I set everything else aside, 
and intentionally drop my awarness
into my body,
the way people tell you to. 

But it doesn't work.
 Or maybe it works for a single second - 
and then something in me recoils. 

Like touching a surface that looks solid but isn't. 

And I don't know 
what to do with that. 

I don't know how to re-build trust
with something 
that disappeared on me
WHILE I was still inside of it - 
conscious, awake, aware. 

I don't know how to move forward
not even just one step
when forward doesn't feel like a direction
my body recognizes anymore. 

Everything feels - 
paused isn't the right word... 
stalled isn't the right word... 

Suspended. 

Like I am still mid-air
waiting to find out
at the last second
if the director will yell "cut" 
and I will find out
finally,
if I land.

Or if this is just where I live now. 

There are 46 days 
between me 
and forty.

And I don't know 
what version of me 
is supposed to show up on that date. 

I don't know 
if she exists yet. 

Or if she's something 
I'm supposed to build 
from this moment forward. 

Or if - 
maybe - 
this -
me -
is her. 

This version. 

The one who doesn't know
how to move forward. 

Who can't yet move forward. 

The one who is writing 
from a body 
that hasn't decided yet
if it's safe to be 
inhabited again. 

The body that just recently reconciled 
while this specific moment 
pulled me 
far, far away. 
This body 
that also finally recognized
that I haven't actually 
shown up
to feel 
or sit inside 
within myself
for what I consider way, way too long. 

Honestly? 

I don't know if that's fixable. 

If that's a solid enough ground to start building on. 

If I have the strength 
or the energy 
or the resources 
to gather the materials 
and create something new. 

Something that says 
I survived - 
even when you didn't expect it. 
Even when you didn't particularly want it. 
Even when we were down to the last chips on the table. 

There is a particular kind of fear 
in that.
In those really deep feelings. 

Not loud. 
Not urgent. 
Just - 
constant. 

Like a low frequency
running underneath everything. 

And I think that's the part 
no one prepares you for. 

Not the moment your body stops. 

The after.

The not knowing
how to come back. 

The not knowing
if coming back
is something you can choose
or something 
your body
has to invite you 
into. 

And mine hasn't, 
at least not yet. 
Not fully. 

There are moments - 
small ones - 
where something shifts. 

My daughter moves in her sleep 
unexpectedly. 
Her hand reaches for mine
without looking,
without opening her eyes, 
operating on the principle 
that she innately knows 
inside of her
that I put her to bed
and that I am still there,
still present, 
still laying beside her. 

And my body responds
automatically
as if on cue
before I even understand why. 

My hand finds hers
and for a second -
 there is contact. 
Life-sustaining contact,
to be honest. 

There is something real. 
Something anchored. 
Something I've spent 2,516 days building. 

But even that - 
it doesn't solve anything for me. 

It doesn't fix the distance 
between my brain 
and my body. 

It just interrupts the feedback loop - 
for a second, 
a minute at most. 

It offers an exhale, 
and a tiny reminder - 
that we can do hard things. 

But that wasn't the question. 

I could tell you that I could do hard things 
when I was just 4 years old.
I could tell you 
different versions of the same story 
from when I was 8
or ten
or twelve
or fifteen
or seventeen 
or twenty two. 

My daughter inhabits 
every cell in my body
as a reminder that without me, 
without my body, 
she wouldn't be. 
We wouldn't be. 

In that moment, 
I can agree,
that I am not 
completely gone. 

I am just standing 
in a place
that feels 
foreign. 

There are no lights
no exit signs
no cues
no guides
no instructions
there is just me
and this body
although appearing attached, 
we are in fact 
operating 
as completely separate entitites 
with almost no communication
between us. 

And underneath all of this -
That voice 
It’s still there… 

Unchanged. 

It still sounds like 
the line written by 
Sierra DeMulder 

“Come home, baby. It’s over.”

I keep hearing it
And failing to understand 
What exactly 
It is asking of me. 

Because it doesn’t feel over 
It feels like I am still somewhere inside of it -
The stopping, 
The coming back.
The not knowing how to live here, 
Especially not now. 
Not right now.
Not tonight. 

But, here’s the thing 
Tonight, 
I didn’t leave.
Not all the way. 
Not even 
When I knew 
It would feel 
So much easier 
To disappear 
Than to continue 
Feeling the weight 
Of this life.

The decompensation
Of this body.

The pain 
That makes me dream 
Of spending my time 
Unconscious.
Unaware. 
Removed completely 
From what once felt like home -

Maybe. 

Maybe it never did. 
Maybe I’ve created that memory 
as one I’ve drafted in the background 

A different version
Of a story I did not choose. 

A story I cannot escape.

A story that continues to evolve.

A story 
Where the writer 
Is trying 
Desperately
To fit 
Too many plot lines 
In one body
In one season
In one lifetime. 

Last night 
I stayed close enough 
To feel her hand in mine. 

Close enough
To hear my own breath 
Even when 
It didn’t feel like 
It was coming 
Out of my body.
How’s that for disassociation? 

Maybe that’s all “home” can be
Right now
In this season.

Not safety. 

Not certainty. 

Not a body I trust. 

Tonight it feels like enough 
Just to say 
I’m not leaving -

Even though 
I don’t yet know
How 
To
Stay. 

And then there are losses that don’t feel like loss at first.

They feel like your body getting louder.
More reactive.
Less like a place you recognize.

It took me months to understand that I hadn’t just lost a medication.

I had lost a kind of quiet I didn’t know my body was depending on.

For years, I was on a medication that was supposed to do one thing: control my Crohn’s disease.

That’s how it was framed. That’s how I understood it. That’s how I explained it to other people.

It worked [like fucking magic] —until it didn’t.

And when it stopped working, we did what medicine teaches you to do.

We replaced it.

We adjusted.

We moved forward.

On paper, I am improving.

The numbers look better.
The inflammation is coming down.
The story, clinically, is one of progress.

But my body is telling a different story.

Pain that once lived in specific places has started to move.

What used to be contained in my legs now climbs—into my knees, my spine, my shoulders. My hands, which were never part of this before, now like my toes often turn white, lose feeling, and disappear from me in small, terrifying ways.

My heart races when I stand up.
When I walk into a store.
Sometimes when I am doing nothing at all.

My gut—despite “improvement”—has become more reactive, more sensitive, more unpredictable. It no longer feels like a system I understand.

And underneath all of that—

there is a deeper disorientation.

Because this isn’t the first time my body has become a place I don’t recognize.

There was a moment—not that long ago—when my body stopped feeling like mine at all.

When it crossed a threshold I still don’t fully have language for.

When I coded.
When I came back.
When something in me didn’t come back the same way.

Since then, I have been living in a kind of split.

A brain that knows how to keep going.
And a body that isn’t sure it’s safe to be here.

For a while, I thought I was finding my way back.

There were moments—small, fragile, real—where I could feel myself inside my body again.

When my daughter held my hand.
When my husband placed his hand over my heart.
When I was writing something true enough to anchor me.

There were glimpses of integration.

And now, something about this shift—

this loss I didn’t know to name—

has made that distance wider again.

Because what I am starting to understand is this:

The medication I lost wasn’t just treating inflammation.

It was helping my body feel quieter.

Safer.

Less reactive to everything happening inside and around me.

It was, in ways no one explained to me, buffering the intensity of being in this body.

And without it—

everything is louder.

Pain travels further.
Signals escalate faster.
My nervous system reacts before I can understand what it’s reacting to.

My body feels like it is bracing for something, all the time.

And that feeling—

that constant, low-level sense of threat—

it doesn’t stay contained to the physical.

It reaches into everything.

There is a particular kind of sadness in this.

Not just because of the pain.

But because of what it does to your relationship with yourself.

I don’t just miss feeling better.

I miss feeling at home.

I miss the version of my body that didn’t require this much negotiation.
This much monitoring.
This much effort to simply exist inside of it.

There are moments now where the fear isn’t about what’s happening.

It’s about what it means.

What it means that my body keeps becoming more reactive.
More sensitive.
More… difficult to come back to.

There are moments where I realize—

I am more afraid of living inside this level of pain than I am of almost anything else.

And that is a terrifying thing to admit out loud.

Because I don’t want to leave.

I just don’t always know how to stay.

So now the work is different.

It’s not just about controlling inflammation.
Or managing symptoms.
Or finding the next right medication.

It’s about learning how to re-enter a body that feels unpredictable.
How to build safety in a system that keeps signaling danger.
How to close the distance between my brain and my body without overwhelming either one.

It’s about grief, too.

Grief for the version of me that used to be able to hold all of this more easily.
Grief for the layer of quiet I didn’t know I had.
Grief for the illusion that progress would feel straightforward.

And also—

a quieter, more fragile kind of fight inside of me.

That maybe this isn’t just loss.

Maybe it’s information.

About what my body needs.
About how deeply everything is connected.
About the kind of care that has to exist beyond a single diagnosis, or a single treatment.

I don’t have a resolution for this.

I am still inside it.

Still learning how to come back.

Still figuring out what it means to live in a body that is both surviving something—and asking, very clearly, for something more.

For now, the only thing I know how to do is this:

To keep telling the truth about what it feels like.

To keep looking for the places—however small—where I can feel even a little bit at home again.

And to believe, even if only some days,

that my body is not broken—

just trying, in every way it knows how,

to be heard.

When I woke up, the very first thought in my head was an image of an instagram photo with the header “Why Nancy Guthrie’s kidnapping was predictable” and I thought wow, even here, now, still, we’re victim shaming? My second thought was that I have watched 25 years of Law and Order SVU and 12 years of Chicago PD religiously - and I have never once, not even one time, dreamt about or thought about anything content related from those shows into or out of or during my sleep - which, to be honest is a little impressive.And my third thought? Ironically, I didn’t even scroll before bed time last night. I was too tired physically and mentally.

I got up and remembered in a stupid haze that I’d left my cough medicine downstairs. So, I mustered up the energy to venture into the unknown, and that, friends, is how I ended up in my kitchen in the middle of the night.

While I was eating my crackers and scanning the pile of mail on the counter, I remembered an unread text reply from a friend. I’d messaged her while I was waiting for my daughter to fall asleep, and I asked her this really unfair question - the same way I do every handful of months or so. And even though it breaks my heart, not only can she do, but she. is always willing to do it. For me, and for our Manda.

At least a couple of times a year in the nearly 3 years Manda’s been gone, I’ve reached out to J, a mutual friend who loved Manda deeply and fiercely as well, and I’d say “I need you to Manda for me. Just today. Just right now. What would she say if…”

And every single time, without fail, J would put together the right combination of words in the right way and I’d read her message in a way where I could almost hear Manda’s voice on the other end of the phone.

This is and has been one of the most generous and consistently kind acts of friendship, love and service that J has done for me since the day we became friends a little over 8 years ago.

I have one other friend, one who sat beside me at Manda’s celebration of life, who will offer the same thing sometimes. She’ll text and said “I can be your Manda. What do you need to hear?”

The last time I saw Amanda was just over three years ago. Thursday, March 9th, 2023.

17 days before the last text she sent me.

25 days before she took her final breaths.

Minus this photo and one really long, full body sobbing hug - the last hug, we sat far apart from each other in her living room, masked, tears streaming down our faces as we talked about what was going to come next. What it might look like. What it felt like for her. What it felt like for me. I mean - come on, how unselfish is to be literally dying and to care about how the people you love are going to feel when they hear the news that you’re gone, when they try to begin adjusting their lives around the hole where you used to live, and when time starts passing, what it is they are afraid of, alongside what it is they know will be easiest or most important for them to hold onto.

Manda talked about her boys, their plans, the things she never got to do or say or finish, how she wasn’t ready, how her mind wanted to fight harder but her body wasn’t giving her that chance. She talked about how she was so tired all the time, and in so much pain, and how maybe the relief from those things would make the transition easier. But it didn’t mean she wanted to go It didn’t mean she was ready.

I talked about my fears and vulnerabilities. Anticipatory grief, she called it. The moments she held in her heart that only she knew, only she had been present for. The roles she’d played in my life, the holes she’d filled in my heart, the ways she fixed things I didn’t know was broken. The way she saw me. The way she showed up for me. The way she spoke the language of grief and empathy and love. The promise she made me make about relentlessly chasing and asking for what I needed, what I wanted, what would help me heal.

When I couldn’t get pregnant, Manda and I sat at an Olive Garden in Orlando, Florida, two months after we met, and she looked into my eyes and said “Manda, you will be a mom. I just know it.”

When I sent her the first photo of our living daughter, she cried the happiest tears I’d ever heard.

Four months later, when she held my baby girl I didn’t know she’d still have a little more than two years left here with us. For all I knew, we could lose her that same day. I took a thousand photos because I knew there’d never be another one to re-create.

In the first few months of motherhood, when Manda called, she would always start the conversation with “Hows Your Heart?” - not how’s B, is she eating, sleeping, growing, turning over. Of course she cared deeply about all of those things, but she made sure I knew I was the priority. She was my mama mentor that whole first year - and I can’t imagine having it be any other way.

Manda was also ironically with me during the start of the worst days of my life. I was in her home when I went into labor with the twins at 12 weeks gestation approximately 1,200 miles away from the hospital I was supposed to deliver them at, without my husband, without knowing how to keep breathing or moving or walking or even thinking.

When we were approaching what should have been the twins first birthday in February 2022, Manda sent me this message.

These words have been tattooed across my heart ever since.

“Grief lasts longer than sympathy or empathy.”

“Your grief will always be seen by me, Manda. Even the when the world moves on.”

Are you getting a sense of just how special her soul was?

On that last day on the couch, we each made a promise to each other.

Hers - that as soon as she got to heaven she would find the babies, and that she would love them and watch them until I could get back to them. She told me it would be the honor of her life.

Mine - that I would never stop looking for signs that she was there - in the room, in the car, on the street, outside the window; that her presence still existed even across realms.

Last night, at 2:10 in the morning, she was sitting on the chair next to me. She was watching me, holding my pain along with her hope. she wasn’t with me long, or maybe I was too tired to recognize when the atmosphere shifted, but I know I felt her. And that’s directly because J knew how to bring me back to her.

To J, and K - thank you for holding Manda and I in the same place, refusing to leave either of us alone. You are both a gift.

And finally,

For those of you who knew & loved Manda, I’ll share this - something I didn’t know about until I found it online after Manda passed in 2023. For Heart Camp friends - trigger warning of happy, healthy beautiful Manda - in body, mind, heart and voice.

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Forward. Predictable. Measured in neat little boxes on a calendar.

But trauma doesn’t respect calendars.

Somewhere inside my brain, time is still suspended between two days: December 16th, when I admitted I couldn’t keep running the pace my life required… and January 17th, when my body nearly stopped running altogether.

The world says it’s March now.

But parts of me are still waiting in those rooms.

But the truth is, the story didn’t start in December.
It started months earlier.

The real story started June 19th, 2025, just about nine months ago, when I received a single dose of a medication my body was never meant to tolerate.

I was told there might be discomfort for seven to ten days. Instead, the pain stretched on for weeks, then months—bone-deep, relentless, and immune to everything we tried.

I hydrated obsessively. I forced myself to move. I followed every instruction given to me. But after the supposed recovery window passed, I found myself crying through most days, desperate for relief that never came.

I saw my primary care doctor.
I contacted the nephrologist repeatedly.
I met with endocrinologists, orthopedists, pain specialists.

Eighty-four days of trial and error followed. Eighty-four days of medications that came with side effects, but no relief.

By the end of that stretch, I was dangerously close to walking out of my life altogether.

This is something writers don’t often say out loud, because we fear stigma. We fear being misunderstood. But the truth is simple:

Constant pain with no exhale changes the brain.

It changes how you think.
It changes what you believe is possible.

It distorts your thinking. It erodes your hope. And eventually, you hear the same devastating sentence from the very people meant to help you:

“We don’t have any other ideas.”

Chronic illness patients hear this sentence far more often than most people realize.

In September, I was admitted to a major academic medical center for extensive testing and evaluation. There were moments—brief, fragile ones—when the pain seemed to soften.

But it always came back.

Fiercer. Louder. More consuming than before.

By the time I was discharged, I felt completely hollowed out. I wasn’t sure I had any fight left in me.

Two days later, I sat across from a pain management specialist in a different hospital system. He listened quietly while I recounted thirty minutes of medical history—appointments, tests, medications, failed treatments.

When I finished, he looked at me and said something no one else had.

“This isn’t in your head at all. Your nervous system is incredibly noisy.”

He explained that what I was experiencing was likely a combination of autonomic coupling and Complex Regional Pain Syndrome—CRPS, Type II.

Being heard like that—being believed, validated, understood—caused me to break down sobbing right there on the exam table.

Unfortunately, recognition didn’t immediately bring relief. The treatments we’ve tried so far have helped very little.

And meanwhile, my body was (and is) still unraveling.

The medication that started all of this had triggered what doctors later described as a cytokine storm. For eight years, my TNF-alpha pathway had been suppressed by Remicade, the biologic that controlled my Crohn’s disease and Rheumatoid Arthritis. But by late September, it became clear the medication was no longer working the way my body needed it to. Reclast triggered additional inflammatory pathways — including IL-17 and IL-23 — which meant my Crohn’s disease suddenly required a completely different class of medication for the first time after 8.5 years of remission.

My final infusion was the week of Thanksgiving.

To bridge the gap before starting a new biologic—Rinvoq—I spent seven weeks on high-dose steroids.

What I didn’t know at the time was that Remicade had quietly been helping control parts of my CRPS and other inflammatory pathways too. Losing it destabilized far more than we expected.

Looking back now, I can’t help but see the pattern.

The endless list of moments where I wonder if I should have researched more. Asked harder questions. Pushed the system further.

How many different places in this story could I have changed the outcome?

By the week before Christmas, I finally had to make a call I’d been avoiding.

I told my boss the truth.

“The version of me you’ve seen on video calls these last few months—she’s barely surviving. I’m eating maybe three hundred calories a day. I’m sleeping one or two hours a night. I’m in constant pain, bouncing between doctors and tests and treatments, and nothing is making it better.”

Her response was calm and full of grace.

“Turn off your computer today. Take the entire winter break. Come back January 5th and we’ll regroup.”

I was grateful.

But my body had other plans.

I started Rinvoq on December 19th.
Three days later, I was diagnosed with pneumonia and had to stop it immediately.

I returned to work virtually on January 5th, even though I was supposed to be in Cambridge meeting with my team and planning for the year. I restarted Rinvoq on January 7th. I joined the meetings virtually and tried to contribute as best I could, even though I wasn’t physically in the room.

But by January 8th, my body was screaming.

I couldn’t hide it anymore.

So I made another call.

This time my boss didn’t hesitate.

“Take a leave of absence,” she said. “Face this head-on. Heal. Come back when you’re ready to run again.”

The next day—January 9th—I was admitted to the hospital.

I stayed there for eleven days.

And somewhere between those walls and the days that followed… time stopped making sense.

The eleven days in the hospital were supposed to stabilize me. That was the goal, at least. Hydration. Pain management. More testing. More specialists cycling through the room, each one trying to understand how a body that had been relatively stable for years had suddenly unraveled so completely.

The goal was simple on paper: stabilize my symptoms until Rinvoq could fully take over, and identify the hidden challenges that Remicade had quietly been managing for years.

But stability never quite arrived.

Instead, my body kept sending signals no one could fully explain yet. My nervous system was loud. My pain levels were unpredictable. My heart rate and blood pressure refused to behave normally. My digestive system, which had been relatively controlled for years, seemed to be operating under an entirely new set of rules.

I remember one doctor saying gently, “Your body has been through a lot in a very short amount of time.”

It was the most accurate sentence anyone had said.

When I was planning to get discharged, the outline was simple on paper: continue Rinvoq, follow up with specialists, slowly regain strength.

But one day before I was supposed to be sent home, on January 16th, something was clearly wrong. My body felt unstable in a way I couldn’t quite describe — dizzy, weak, disoriented, like the internal systems that usually operate quietly in the background had all started arguing with one another.

That morning, my body nearly stopped running altogether.

I knew what was happening inside my body.
I just couldn’t tell anyone.

I was terrified.

I knew that moment would end one of two ways.

Either the pain would finally stop forever.

Or I would claw my way back to the people I loved.

I regained consciousness in the hospital hours later, surrounded by monitors, IV lines, and the unmistakable look on the faces of people who knew something had come very close to ending differently.

It is strange how a single moment can redraw the entire map of your life.

Before that day, I was someone who pushed through pain. Someone who kept working, kept showing up, kept believing that if I tried hard enough, researched enough, advocated loudly enough, things would eventually stabilize.

After that day, survival itself became the work.

In the weeks that followed, some things did begin to clarify medically. The Rinvoq appears to be managing my Crohn’s disease — at least according to labs and imaging. On paper, that part of my autoimmune disease looks controlled.

But other pieces of the puzzle surfaced.

We discovered what appears to be an underlying motility disorder that Remicade had quietly been managing for years without anyone realizing it. Once that medication left my system, my digestive tract began behaving very differently. The discomfort, pain, urgency and unpredictability wasn’t something I honestly ever expected to live through again, and it gutted me in new ways.

And the CRPS — the nervous system condition that had originally affected both of my limbs — didn’t stay contained there.

Instead, it has began to spread inward, evolving into what doctors call central sensitization. The pain signals are no longer just traveling through injured nerves in my arms and legs; they are being amplified by my central nervous system itself.

In other words, the volume knob had moved from the periphery… to the control center.

All of this has changed me more dramatically than I could have imagined nine months ago.

I move differently through the world now.

Slower.

More carefully.

More aware of the fragile negotiations happening inside my body every moment of the day.

There are still more questions than answers.

There are still days where the pain is louder than anything else.

But there is also something else now — something I didn’t have during those early months of chaos.

I know what happened.

I know my body wasn’t imagining it.

And I know that survival, even when it looks messy and incomplete, is still movement forward.

Or at least, that’s what the calendar insists.

Because according to the world outside my window, it’s March.

Time has continued its steady march forward. The weeks have stacked themselves neatly into new months. Life around me keeps unfolding exactly the way it always has.

But inside my mind, time still bends around two days.

December 16th — when I finally admitted I couldn’t keep running the pace my life demanded.

And January 17th — when my body proved that truth in the most terrifying way possible.

The calendar moved forward.

I did not.

Not entirely.

Some part of me is still standing in those rooms, learning how to breathe again.

Because surviving something and moving past it are not the same thing.