The brain is the last uncharted area of medicine. We know so much and yet so little. We prescribe medications that we don’t have the full story about how they work, or how they don’t as the case may be. Prescribing can sometimes be a shot in the dark. Other forms of treatment can be also, electroshock, tms, as can psychotherapy. Studies indicate mental illness may be related to the gut microbiome, inflammation, autoimmune disease, and other medical things we don’t yet quite understand. Often, medical evaluations aren’t completely undertaken before a label is permanently assigned to those experiencing symptoms. They get forgotten.

I’ve worked for over 28 years in the medical and behavioral health field doing assessments in hospitals, emergency rooms, homes, prisons, courts, nursing homes, hospice, assisted living, and now, private practice, and witnessed probably everything there is to see at this point. I’ve been involved in cases similar to Lindsay’s. I worked on board an ambulance for a few years, and as a lifeguard and as a nanny. I’ve done cpr on people, I rescued a drowning child, I’ve taken care of countless children, and I am a mother. I’ve been a mother who experienced severe post partum depression and borderline psychosis after my third child. The trauma of which trumps every crisis I ever was involved with as a provider.

I was very much alone after that birth. It was a hard birth, it was complicated by shoulder dystocia and it was when my physical health started to truly deteriorate. Ten years later I had to leave the field and go into private practice because I was so unwell. A few days after I gave birth my baby wasn’t feeding well, my breasts were swollen and bleeding, I was exhausted, and I had two young children at home in addition to my infant as a single parent. My village was incredibly small.

I cried for days. I couldn’t sleep. I couldn’t think straight. My thoughts started getting very, very dark. Thinking about it now brings tears to my eyes and a rock to my chest. It’s hard to think about. I wanted to live and care for my children, and, I also wanted to die. Those thoughts carried me right into the abyss of the question, “what if everyone came with me?” The suffering would be over. A permanent solution to a temporary problem. I remember rocking back and forth, sobbing while holding my infant to my breast, saying I’m sorry, I’m so so sorry.

Somehow I got out of that hole. I don’t really recall how. A lot of that period of time is a blur. I saw the pediatrician but I didn’t have many other doctor appointments. As I birthed at home, my exposure to mainstream medicine was sparse at that point. I saw my midwife and I saw a lactation consultant. Both were supportive but didn’t always see me in the throes of the darkness I was feeling and I was too afraid to be honest with anyone about how I felt. What if they took me away? What if they took my children? The shame of it was so acute I hid it.

What if it didn’t have to be this way? What if post partum doulas were provided? What if community was truly something that existed in the white community and people truly felt responsible for one another? What if the services that are available weren’t punitive but rather bolstered a mother or a family so they could be the best versions of themselves rather than having to hide their burdens so they don’t get in trouble.

What if someday we understood mental health as not separate from the medical system but as a symbiotic relationship that cannot be untwined? What if we researched it more with actual women, women of all races and ages and socioeconomic status, not just a certain tiny fraction of women or even worse, men?

Now that I think about it, it may be that going back to work and working with a wonderful hospice team may have pulled me out of that hole. The guilt and exhaustion of going back to work so soon after giving birth was horrific but it may be what saved our lives. I remember still having significant episodes from time to time, but being surrounded by a circle of strong caring women at work, even if I didn’t know them well, and even if they weren’t necessarily taking care of me, I think may have helped. I’m still friends with two of those women, women who continue to be sources of support even though I may not see them often in person anymore, their presence is felt.

Not every woman can return to work, not every woman wants to. Nor should they, really. I certainly did not want to. What I needed was a village, I needed daily, in person support and a system that wouldn’t punish me for not thriving.

I don’t know what Lindsay needed. I’m not sure what she had, or what was missing. All I know is she was, by all accounts, a loving caring mother who killed her children because her brain ceased to make sense. I was and am also a loving caring mother who had the darkest thoughts you could ever imagine, and was somehow able to overcome them, while she did not. Tragically.

If you see a struggling mother, actually if you see any mother, help them. Help them in any way you can. Without asking for anything in return. It doesn’t matter how. Being on the receiving end of literally any form of acknowledgement, care, or support means you matter, you are seen and that is life saving.

Mom can’t see, can no longer walk, no longer play the piano and you’d think that grief might swallow her whole. she’s struggled with sadness for much of her life. Yet, strangely, she has grown more dignified and seems to be able to take things in stride more than ever. I haven’t seen her in awhile now, which feels awful.

It is I that feels consumed by grief instead. I wonder when I am her age, will it still be there? Or will I also come to some acceptance, as she has, that the aide in her room will fail to change the channel from golf to something else, and learn to listen to the plays? I supposed there’s not much to see with golf anyway, and each play is narrated, which actually is interestingly helpful to the blind.

We spoke earlier this week and her dinner was brought to her during our conversation and she sighed and said, “oh, carrots”…….and we laughed. She said, it’s always carrots, made all different ways, but they still taste like carrots. We laughed again. She’s never been a fan of vegetables.

She talks about going home, and isn’t sure how it would work out, but she seems to enjoy sitting out on the front porch of the nursing center, somewhat similar to her home growing up, that had a huge wraparound front porch. I can imagine the frustration, the feeling of aloneness, despite being surrounded by people, but not her people, not anyone she truly knows or loves. I’m not sure if she’s actually accepted her situation and I do know there is a fair amount of sadness, maybe even anger, but there is a peace i’ve noticed about her more recently, a sense that things are what they are, and perhaps, there might be something new to learn or appreciate. I could be wrong of course, she’d have to say.

I’ve found aging can be a tamer, it certainly is a thought machine, as one looks over their life from ever thicker lenses, possibly cloudier, also possibly clearer, when one finds and is willing to use a cleaner.

The personal interview itself was interesting, discussing others impressions of me, some of which were surprising. I’ve often felt that I’ve lived my life in survival, never really having much time to think about how others perceived me, as most of the time, I felt I had to proceed with whatever I had to do, regardless of what others thought.

I found myself filled with shame during that interview, knowing that my family thinks of me as somewhat reactive, rigid, blunt and annoying. They said I was also resilient, but that didn’t feel like it made up for what sounded as though I was a monster. We also talked about what my biggest challenges were right now and how I could address them. Being in midlife, my roles are changing, I often feel a bit out to sea, isolated, alone, adrift, so to speak, unsure about how the next fifty years could pan out given the extent of my physical conditions and inability to get out and about easily.

I received the report not long after the interview, a 22 page essay detailing all the information discussed and their conclusions, that yes I have ptsd, and a fairly severe combined type of ADHD, which hadn’t really been outlined like that before. It also said I am a level one autistic. That feels a bit relieving but also, while it explains a lot, since I am now 53, I have spent most of my life pretending I am “normal”. My social skills are enough to get by, and most people I know are surprised to learn that I fit the profile of autism. Most don’t really believe me. Also, I scored in in the highest percentile for masking behaviors. Which makes sense. I was never allowed to be different. I was, and always got in trouble for it, but it was never “allowed.”

So I feel a fair amount of grief at the moment, knowing that life has always felt like a huge struggle. Knowing that I felt like how so many of my clients have felt, “like an alien” but being born in an era where autism was characterised as Rain Man, or non verbal, hand flapping young white, mid to upper class boys. Not as a very sad little girl who hid stimming behaviors, had very few friends and felt very misunderstood. Not as a woman and a mother with a lot of life experience that suggests she hasn’t struggled. It’s validating to know now, but it’s also a bit sad and irritating that a large group of people like me have spent the majority of their lives wondering what was wrong with them, when all they had was a different sort of brain.

We walked on and behind that building and down a short overgrown path we came upon a large yellow colonial swallowed by wisteria vines that curled and invaded every crevice, forming curtains over the many broken windows and doors. The architectural detail was beautiful, small square and rectangular multipaned windows adorning the spaces above the exterior doors and gables on the second floor, slate shingles again, though damaged, making up the roof.

We walked into the doorless yet screened in porch, noting that the house had been a massive acorn storage facility for an army of squirrels along with a safe and very roomy birdhouse for a variety of songbirds. Again the detailing throughout the house suggested a much older construction than early twentieth century. A lovely baby grand piano graced the great room, still functional, if not out of tune, still with the original ivory keys. A birds nest sat to the side of the music stand as if waiting for it’s occupant to return and sing along.

There wasn’t much left in the house save a few kitchen utensils, a couple scary porcelain dolls, mouse eaten clothing, scattered photographs and other odds and ends that seem to be part of abandoned properties, empty bottles, papers, forgotten pieces of lives that once lived in this well loved home. As an abandoned house enthusiast, especially those that might be haunted, we had hoped that a spirit might be present but we detected no such thing, but rather a warm, pollen and sun laden breeze coming off the sparkling water just steps from the back door.

We later learned that the park has been fraught with controversy since the state bought it from the former owner, Mary Forster, the widow of architect Frank Forster who had died many years prior. The state bought it from Mary for only $125,000 in 1963 with the caveat that she could remain there until she died and pay only state property tax. Her grandson became caretaker and reported Mary had many regrets for having sold the property to the state for such a small sum when it became clear that they didn’t have the funds to keep up the property or the buildings, an issue that remains to this day, keeping this huge pristine park from being enjoyed by state and local residents.

Properties such as this seem to have this fate as costs well exceed state budgets and personnel, leaving historic or otherwise amazing buildings with the surrounding acreage covered in “do not” signs, away from nature lovers who might otherwise benefit from the unique topography and history of these areas. Except for intrepid explorers such as myself, who take the “do not” signs as engraved invitations for entry.

I’ve thought about this experience all evening, this sudden and deep emotion of longing while holding this bear. It has been an emotional last couple weeks for a lot of reasons, certainly a difficult start to the year not only for me but for almost everyone I know as we watch the world around us lack sense and order. For me there’s been a sense of deep grief for the person I once was, for my abilities, my strength, my resilience, the sense that I had some sort of rough draft cut out for this phase of life that has been ripped away. Feeling in so many ways completely unequipped to parent my adult children in the way that they need, years long past where a breast, or a lap, a story or song could soothe the hurts of life and be a shelter for a time.

That is what brought me to tears I think, the sense that the mothering that was cozy and comforting is mostly gone. Replaced by hard conversations, special times, but often at arms length and carefully, mothering replaced with parenting from afar, more thinking before doing or saying, more planning than spontaneity. This from a mother who struggled with touch, with proximity, with the intense physicality of parenting, specifically mothering, the intentional closeness I fostered through home birth, cosleeping, baby wearing, and extended breastfeeding; that became harder and harder as I got older as I recognized my sensory overwhelm and possibility of being on the spectrum and as each of my three children got diagnosed themselves.

So here I sit tonight, a lump in my throat because my eyes are so dry from autoimmune disease that they only produce tiny amounts of tears that pool but don’t fall. Wishing and willing myself to have a good cry, to flush out the grief, the loss of the small, plump, warm child in my arms that I could easily comfort, easily help, when problems were smaller, although my emotional intelligence and ability to regulate was less developed. Wanting to weep through the grief of my old self that feels unrecognizable, as much as it has healed. While I can name and sit with my feelings now, knowing they are not bad or good, they can still take me by surprise, elicited by things like a large brown stuffed bear from Ikea on a random Monday night.

They meet together and the tears flow, "I just found out this morning" or "I knew she was sick but....." or " I didn't know she was sick at all....its such a shock." They huddle together and the voice is the same, "it isn't fair". Which of course, it's not. Not at all.

Its never fair when it's someone so young, when it's someone so beautiful, someone with a young child, someone so capable, so caring, so, so many things. Its not fair even when someone isn't any of those things, because death doesn't discriminate, it scoops up each person when the time is right, or when it doesn't seem right, or when it seems so very wrong.

Someone died today, someone young and vibrant, caring about her family and friends until her last breath, Not wanting to trouble them with the pain of her disease. She died, and she is no longer suffering, which is fair, which is right, because there is no more pain. She has left a hole but a hole that is being filled with memories, stories, pictures, and tears as each hour passes, a hole that will overflow with a celebration of her life.

I hold her hand and we sit together and reminisce, talk about her sister who I had also met with, with whom I learned the history of the area, to whom I taught about dementia, why not to argue with her sister when she forgot where she was, or thought she was still young, or so many things that happen when one starts down the sad road of dementia. "I was the oldest and now they are all gone" she says and we talk about that, how strange it is to be the last one left of her family of siblings even though she was the big sister, to have her parents gone, and to feel like an orphan, an orphan, at the age of 90.

Yet it's true. Old enough to remember life when there were no telephones in every house, when they walked to school, when her mother knitted woolen stockings for school. Old enough yet feeling young and vulnerable without her mother, without the company of her sister with whom she shared a room for years at the nursing home.

And it's strange, that this woman, usually so confused, anxious, who has difficulty knowing where she is, what year it is, or what she had for breakfast, is, in this moment, so lucid, and able to grieve. And I am thankful for this, as so many people must be retold again and again, and must grieve a thousand times the death of their loved one because they cannot remember they have gone.

This terrible disease of dementia, this robber of history, this strange affliction that has loosed it's grasp today so she might find peace. We have tears in our eyes together, we clasp hands, we grieve this loss, we will continue to remember until she is able to join her family, no longer an orphan, in places beyond.

With a blanket that is tucked around you like a cocoon so that the space doesn’t feel so cavernous....

Thoughts run around to failures, and wanting, and falling into chasms of loneliness.

And then, sometimes too soon, slivers of sun peek in between the openings of the window shade and a decision must be made,

To get out of the too big bed, emerge from the safety of the blanket cocoon and wipe away the tears and know that life doesn’t make much sense, that there are lessons, not failures, that there is only what is needed for the soul now and wanting only creates more wanting.

So the most brilliant shirt is selected to stave off the desire to dress in mourning, and a bit of sparkle is added, and the foot goes out the door.

The empty space will be filled gratitude for what is, and the knowledge that though some things have changed, there is still love and connection, different but steady.

There is darkness and the soul, yet the midnight sky can’t overtake the heart because that would be giving in, that would be accepting staying in the past and not creating a future. That would be a soul darker than night, and giving in to that which is not light.

I look at my client with his dark sunken eyes and wild hair and can't even imagine what it must be like to be him.
"I'm a survivor" he says, and he certainly is, spending most of his life on the street with little social contact.

What must it be like to count on a dumpster for food, or a soup kitchen if you haven't been banned from one...
How must it feel to spend the night curled up in the corner of an abandoned building or to live with dozens of other people in one room for months....

My "guy" is resolute in his unwillingness to sign a piece of paper that might make it possible for me to speak with his family, to be able to determine what sort of help he could get, aged and impaired as he is, yet able to speak for himself, not quite impaired enough....

He is polite yet gruff, "not right" but just "right" enough for court.

He is likable and we joke a little and I try to cajole him..."hey, I could help you at least have three hots and a cot..."

"nah" he says, smiling...."I'm a survivor" he says again and I smile too..."yup, you sure are."

My "survivor" goes back to jail and I go back to my desk, and my phone, and occasionally, hope......

Another week of bravery, another week of soldiering on, until it rains, until the snow falls, until the gnawing hunger and instability causes him to lose heart and go to the ED again, or not, and he is found on the ground, under the tree, behind the hedge, beside the million dollar building in the heart of a multibillion dollar university that studies such things..........

Tissues, for some the whole box is gone by the end of the session; for here is the place where we talk about their loved ones who have died, or will die, or are dying, and what, what in God’s name do they do now?

Caregivers suddenly finding themselves with none to care for, thrust into a world of being suddenly free and suddenly encumbered by their own needs.

And the connection happens, and my own eyes well with tears, and we remember together, because so often I have met their loved one, and sometimes I have not but feel as if I have, the stories and the heartache, the exhaustion, and the energy needed to continue to care.

In this space I am not the expert but the witness to the story, the one whose privilege it is to hear it, to sit and know with every fiber of my being that this is sacred space and sacred words, words that envelop the room and take on a energy of their own, wrapping us both in wonderment, in sadness, in so many emotions without drowning.

To think that this was not a path I wished for, that the busyness and task laden work I did for years was preferable, but killing my soul, and my body. To find this calling of listening and helping others tell their stories happened out of necessity but has become the greatest joy.

Connection across a room, across ages, and colors, and creeds, and beliefs. Finding my own soul soothed by this mutual understanding and thread of human-ness held by two people in an interchange of thoughtful words.

It is in touching us that we begin the search for the meaning of that which was taken, to start answering the questions we never thought to ask, to explore the topics never put into words. Death touches the face and reshapes it, each person a different mask, a mask that in time reshapes or remains contorted in pain.

I see your sparkling blue eyes, though red, are beautiful. That even though sometimes you make no sense, I can tell you are smart, your vocabulary gives you away.
I see that you have a sense of humor, that somehow through homelessness and chronic addiction you have survived, that you are more resourceful than I am, can live on two dollars when I have difficulty living on much much more.

I see the person that you are underneath your illness, that your petty crimes are how you survive, how you make it through another day with no money, how you feed yourself, or your habit, or your children, and that is all you know how to do......

I wish you had been given a chance, but you didn't have one, even in the womb, as drugs crossed into your body through the umbilical cord, as endorphins coursed permeated your environment as your mother was punched by your father.

I do what I can, and I hope it helps, I don't know if it will and I know that it might only help for a little while but at least it might help you find something that for some people is forever elusive, hope.

With that shred of hope, my wish for you is that it will grow, and lift you, and bring you to a place where you can see yourself as I see you, a precious human being, worthy of love.