I See You, I See You, I See You.
these are the words of Carly Thompson-Campitor.
And this right here, is me, again, inevitably falling short of being able to prelude such a piece.
A story that is not mine, but I can find pieces of me in. A voice that has not been heard, but I can hear echoes of this community throughout. An experience that is forever-unfolding, not unlike yours and his, but to try and capture the whole of it. Of her, of our own selves that can’t help but slip through the cracks, is truly an impossible feat, but one that we will attempt again and again, because no longer can we afford to close the doors when the conversation gets uncomfortable.
To leave them open, even if just enough to let others know that they aren’t alone.
To turn a blind eye. To have something so exponentially impacting, something that has unwillingly pulled us this way and that, dissipate into nothingness. As if living is only measurable when we’ve made it from A to B without falling short, pausing, or breaking. As if our stories are only worthy when stamped with approval by others.
This right here, this is your right; to be heard and to feel heard.
To absorb the stories of others until you feel ready to share yours.
Thank you, Carly. Thank you for this unfolding of the seemingly unanswerable. For sharing before this language has been learned in full.
In the all the years I had been sick, it was the name, not the healing, that I learned to hope would bring me away from it. I sought labels to bring to me a vision of health where I didn't have it, a grand and glowing 'after' to long years of reaching for health where there had been none. To root me to a place in the world that was knowable, chartered. Relief for so many years I thought would hinge upon a diagnosis and my ache was always for this. With the finality and knowability of diagnosis comes a trajectory forth. I learned to live without labels, learned to live with the body's dual offerings of possibility and constraint, with the understanding that the body is the way and the very thing that blocks the way. When I finally got that name, nearly two decades after when I might have first needed it, it brought me no more sense of relief than I had had before it. Even with a name I thought might contain it, a name, Lyme disease, that so neatly held together all those years of suffering for me, there were no edges to the agony, no clear shaping to where it stopped and where I began. In all the years I didn't know what it was, I became it.
For those who had been tasked with coming up with answers, I was, for too many years, neither sick enough nor well enough to fit in any understanding. The doctor who finally gave me a Lyme diagnosis slapped her bony hand on her desk and told me how sick I was, how serious it was. The one after said he sat with his head in his hands when looking at my long history and asked himself how anyone could have missed it, in all its angry obviousness. These were welcome after years of being mis- seen, misheard. I had spent long years of my life looking for answers where there were none, pinning faith on a system that couldn't bear the weight, that would fail me over and over again. I was bound to the tight confines of a particular kind of medicine that would, yes, at long last give a diagnosis, but then deny the existence and narrative of that very diagnosis, turning it into a new node of suffering, part of the suffering itself.
For most of the life that I remember, I have straddled a line, passing at functionality, learning to live with the perplexing and haunting, normalizing a set of slow-moving and insidious symptoms because I had no language to articulate them. It happened in high school, or maybe before. In its chronic form, an illness like Lyme disease is perhaps most remarkable in its ability to exist wholly outside of the realm of before and after. It may well embed itself in histories and in futures before it is even fully recognized as a cruel marker of the present. I still cannot look back with clear eyes and discern when it happened, or how, but can recall a slow-motion undoing of everything I had been before. With a series of moves and losses that may well have left me deeply debilitated of their own accord, the tick bite happened somewhere in the dark, obscured by the painful life unfolding around it. Somehow, I got sick, sick in a different way, in a way that would evade proper diagnosis for nearly two decades. I remember a heaviness coming down, a new weight in my bones, something malevolent that shook me from the inside, a slow rattle no one else could hear or see. I remember not being able to lift my head off of my desk in class, a gradual cognitive slurring, tics and tremors, searing headaches, stabbing pains that ripped and vanished just as easily as they had come, flashes and shocks that sparked behind my eyes and in waves all over my body, an absurd weakness that left me feeling I was being pulled straight down into the center of the earth, the ache of being in a body increasingly not mine. I remember that things no longer made sense, words, ideas congealed into one indiscernible mass. I remember feeling I was somehow not in the world, that I was underwater, that I was not in any real way here. I remember the pure way I wished I would die.
I went to three high schools and learned to stop talking. I learned to shroud the growing shame I felt at the feeling I was not able to keep up with the world with a silent defiance. My withdrawal, and the sleep I couldn't escape, looked, to those doing the looking, like depression and for the next 9 years was treated as such. I was put on the first of 26 antidepressants at 15. And while the physical manifestations continued to spiral through and out of me, I never learned the right way to speak of them, and I dragged slowly through my adolescence, carted through the mental health system only to come up again and again against a diagnosis of depression without any language to counter it. Every antidepressant, old and new, failed. And all the while, the stammering of my immune system kept me bound to a doctor's office, to some new antibiotic for some new infection. Still, no one ever looked beyond the boundaries of a perhaps all-too-hasty mental health diagnosis. Endless rounds of new doctors, from neurologists to endocrinologists, and a growing horde of mental health professionals revealed little else than more unmatched pieces to a puzzle. I was sick, but no one could see how. I had no way to tell them because I had no way to understand it myself. It was the body I had, it was all I came to know.
Learning to live without answers meant, in time, that I came to invalidate, minimize, normalize all parts of myself until all anomaly became all that I was, part and whole, and I could no longer divorce myself from it and could no longer articulate to even myself what was wrong other than to know that something was, deeply, gravely. Improbably, and against my own wishes, I kept surfacing at just the right moments, somehow making it through each new turn of my life. I graduated from high school, I graduated from college, I worked, I returned to school, I worked. I functioned, I passed. I kept up in all the ways I could when I was not sleeping. I learned the craft of masking my whole self in front of others so that they might never question. So that I might pretend I was like them, functioning, not thinking of how quickly I might be able to lie down, stay still while the tiny agonies of some other body within mine rolled through me. I learned to negotiate the leaden responsibility of being alive while sick. All along I remained sick, big sicks and small sicks, tethered to a doctor, asking for help, believing I was not as I should be, that there was something wrong. All along, though I never stopped seeking help to find an end to it, I hoped with the same breath that whatever it was would take me down with it. I hoped for rest so that I might live, I hoped for endings.
Misdiagnosis, and the time it takes away, is only one affront to the chronically ill. Bad medicine is an inability to see gray, to see the inflection points of suffering within an illness, those swollen points that come to give the sick their very shape. Mapping individuals onto ingrained mechanistic paradigms, the purview of most of western medicine, is, in cases like mine, a failure to all. And yet, I looked for these very borders of knowledge to understand what was happening to my body, and to seek a final end to it. I sought my salvation in an answer from someone who knew where I did not. While the desire to be treated as individuals, as complex and uniquely whole beings runs deep, those with mis- or undiagnosed chronic illness ache for an altogether paradoxical need: to be understood as knowable, definable, treatable in a systematic and repeatable way. To be told there is an answer, there is an end. To have very unique kind of suffering heard and, ultimately, answered. Often with no obvious markers of illness that situate them in a definable locus of allopathic understanding, Lyme sufferers inhabit a particularly sinister and unknowable realm where suffering can't be neatly embodied or defined, where what's wrong often parades as something else altogether. Denied their rightful place in the annals of the unwell, chronic Lyme sufferers are left adrift, unfathomably alone on a cursed trajectory, unseen, unheard, out of the world.
It was not until I was 31 that one doctor first ordered a Lyme test, a casual afterthought to years of futile probing. But a positive result only opened new doors of non-answers, questions, blank looks. I entered into a landscape where the complexity, political underpinnings, and brazen medical denial of the chronic form of the disease itself made diagnosis just one piece to a moving maelstrom of loss and disorientation. Years of depression diagnoses bore their mark on me, followed me across the country, found their way into every doctor's lexicon even after I learned to lie, learned to say that I had once been depressed, but was no longer, learned that the only way I could find an answer was to get out from under the mantle of the depression I had had to bear for so long. A depression that somehow precluded all other modes of thought. As if, in being depressed, I could be nothing else, there could be no other out-of-sight malady at hand. Even after a reasonable diagnosis, even after proof, even after years of infections and illness that had kept me only half-alive, I was no closer to an end to suffering than I had been before it started.
And so began a long trek through an underworld which offered no guides. I sat before an infectious disease doctor who quietly tucked away my positive Lyme results saying there was no way I could have it, and, wishing me luck, handed me a referral for Electroconvulsive therapy in their stead, and a doctor who told me I wore too much black, who suggested I read smut novels to take my mind off things, and a doctor who said there would be no pill that could ever help me, that the problem was, maybe, in my soul. I sat before doctors who continued to order every test available, who solemnly listened as I offered my own agonized Lyme assessments, who passed me through long, tired lines of referrals, who spoke to me as if I were the only one who could not see that this really was "just depression." Who urged me to try just one more kind of antidepressant because 26 different attempts with no results seemed like not enough. Who, somehow, could not see the manifold shock of symptoms nestled in the very depression itself, who somehow could not hear when I gave them enough context to allay any and all doubts, did not hear me say that I grew up in the Hudson Valley in New York where Lyme is endemic, that I grew up with two parents who also had Lyme, that I grew up playing outside day and night, that I grew up with my horses in the barn, that I grew up building palaces in the woods, that I grew up galloping on my hands and knees through fields, that I grew up covered in ticks. That I grew up covered in ticks.
Though I still consider it a great fortune to have had access to so much care at all, the burden of denial, of being explained by others, became its own pang of suffering. I was seen by doctors, but only in part, a silhouette. I came in and out of focus at the wrong moments. And with each misguided encounter came a new small erasure of my worn self. I had to be wrong. It had to be something only they could see but that I could not, not the self, or the sickness I thought that I was. Somehow, I lived as someone entirely other from the one being examined, explained. My certainty of what was inside of me, my deep knowing, could never counter the denial of so many in the medical world. I will always be wrong to someone, my body always ready to be explained away from my experience of it.
As a chronic patient, I became bound to words, their words, to all the ways others said I was well enough when they could find no other answer to give. Every word mattered, every one seared, but so few realized the weight of them, or how, in time, they came down to me like curses. The doctor who brushed aside my Lyme diagnosis and insisted instead that I get Electroconvulsive therapy will never know I walked out of his office thinking of how I might leave this world because how could I have lived another day unseen, and he will never know this, never know the force of such simple words, or how easy it is for those who throw their words to push the desperate right over the edge of the world. All the words that damn, and all the words never said that do the same. All the ways I kept mining through the dark to find words that might give solace where they could give no answers.
And so it started with a tick bite. Or a family fracturing. Or some lingering ancestral smog, a curse for a long-ago-lived transgression. Or it started in a diagnosis I finally wore with its long, thorny treatment tail. Lyme and all that it meant, a whole world within it. Or maybe it started in the ways that I tried to say that I was sick in ways that didn't matter, to those who couldn't hear, or in ways that were only unrecognizable to those I was trying to tell. Perhaps the real loss in chronic and misheard illness, the ruinous, anchoring loss beneath all the varied ones that accrue across all spheres of life, is the erasure of self that happens over time, the sense that you no longer recognize yourself as you may have been before it started. Through all of it, in my own way, I was only asking to be seen and maybe that is where long illness takes us, to places removed from view where we are no longer what we were and not yet what we might be after it. I became the sickness in all its permutations, I was nothing else outside of it. I became the line between each medical record with each new provider, the written history itself, the assessments and judgements that mapped to others that came before me, that would bind me to all of those who came after.
Outside of the denial, the erasure, I lived it, alone, every day. Chronic illness, like shame, is a stripping, a slow dissolution of threads that helped guard you against all that you hoped you would not be. It is a grand blurring between knowing and not knowing. It is the intimacy of loss. Long illness is a slow weaning off of life, the hands that take yours away from whatever you were holding, the letting go of all of the trappings that once had made you understand yourself as an entity, understood, separate and whole from all of the things that weren't you. It is the lurking that moves out of sight within you and makes you see so acutely all that might have been and all that is not. A gnarled underside to dreams, the realization that hoping for life is only bringing you further from it. In time, everything you give up is a war no one can see.
Knowing what it was only made looking for mediators to come between me and it a more desperate act. I only sought the right way to reach a place of reconciliation with it, to cleave a space between affliction and self where there had been none before. And once I finally found the Lyme doctors who could not understand how I had gone on as long as I had, I tried everything that was presented me. I offered no honed skepticism, no challenges, only an unabashed need for someone else's answers. Chasing recovery was only moving forward without looking to either side, without thinking beyond simple facts and clean orders. But it played out in a shuffling, an idiotic wrong-footed fumble towards something others spoke for me, but which I could not see. I followed directions, I cut out and added, I tuned in and out, I gave up, hurled all of my efforts against the wall and then, because there was nothing else I could do, I started again. And on and on it went with no tracks behind me to chart any progress made. There were treatments and failed treatments over too-long years and the looks from my family when I told them of something new I was to try, something new my doctor had offered, something, somewhere that had worked for someone. The looks I am still unable to articulate, the sadness we all shared, the defeat. The looks I came to understand that told of the limits to holding another's pain.
Healing can be amorphous, recovery a marker on a trail you missed. Its origins may forever elude and its seismic shifts may manifest as hiccups forgotten as mere passing irritation. I've learned to find places of health where I hadn't been looking, tiny pools of neutrality between health and pain waiting silently between each toe, around the slope of my hip bone, tucked in the corners of my eyes. They are simple offerings. Un-pained places I meet when I walk the other way, landscapes, great vales for where health might be if I stop and look. Slowly, I find myself learning how to be on the losing side of health without longing. There are moments I am able to see outside of the singular thing I have been striving for- -a return to health--where in washing my dishes, or sweeping away flecks of cat litter I understand that I am there, right there in the very life I have. My health, and all the ways I don't have it, swallowed by the mundane. There are moments I see that it is not only the time of being unwell, but the rhythm and pace itself. That I can exist within and outside of the contours of what has made me less than well. That sleeping all my life away, that showing up over and over again after the lights have gone out is still, after all, an act of the living. That I am all the labels, all the final words on bloodwork, all the reassuring touches from practitioners in raw moments of exposed suffering, and that I am, deeply, none of these things.
I had a dream in my early 20s that I will never forget. In it, I found myself wandering a vast and barren wasteland. My slow ambling grew to a ragged panic as I realized the devil was behind me in chase. I ran and ran with every part of me and yet it only grew closer. I approached a crossroads, and there it got me, and we wrestled to the ground, dirt and airless-ness and terror. I tried to choke it, to so desperately grab its neck, but it pinned me with some otherworldly ease and then lifted me, doll-like, to face it. It slowly wrapped my legs around its waist and then, as if we had always been so, we were one and I became a part of it, face to face with it, my own legs dissolved right into it as we walked down the road with my back to the horizon. We learn, and hope, that in sickness there is a beginning and an end, a shift, once and for all, to all that was. But in this memory, I find myself today and yesterday and tomorrow.
I am sharing this dress with the devil and half of my body is its. Here within the drawn-out time of this pernicious sickness, whose vicissitudes I have never fully learned to negotiate, whose deepest wells I hope I have long since plunged, I am still sharing life with what has taken mine. My body, still the way, and still the thing blocking the way.
Now I think of all the bodies I've had and all the ways they've lived. I think of luck and the people I know who wear it like fur. I think of all the new ways I might someday learn to live with something that has taken so much of my life. I think of mercy and how I might not kneel so heavily before it, grasping for its endings. How I might someday learn mercy on my own, as my own offering. There must be words for this, a language I don't yet know. In simple ways, I am talking about being seen when you can't see. About the depth of the need to be held both outside of and within the bounds of knowability. I am talking about the ways we move through places hard and damning alone. I look now for a litany of all of the ways I have survived, and for all of the ways I have not. I look for ways I was there through it all, riding right alongside of my sleeping sick self on a tall horse, through the dark. I have been asleep, I have been between worlds, I have been out of time. And all along I have been there in the night saying to myself with all the words I know, I see you, I see you, I see you.
A little bit about Carly.
Carly is a design researcher who works at the intersection of health and design and lives in the PNW. This is her first debut into the writing world, and my gosh am I impressed!