As an oral historian, writer, artist, and acupuncturist there is no doubt that I believe in the transformative power of story, and yet, I often get concerned with who is doing the sharing and how such sharing is being interpreted. What is being heard from the experience of another being shared and, more importantly, what type of effect will this have on someone else’s understanding of another’s life? Who gets the right to tell one’s story and, equally, how is a story respectfully heard?
There is the work of both listening and hearing. I believe that hearing is the embodied form of listening. The affective labor and attunement to one’s story. Hearing is how we digest another’s narrative to a point of viewing the world a little differently, expanding our vision beyond the horizons that we might have once only known.
My concern is, however, that there are not enough disclaimers when it comes to one speaking about another, or even one speaking about themselves. In our culture of pigeonholing such things as gender, race, and disability into codified identities, I often hear of people speaking about a person’s story, or a prognosis, as if it will be the same for all. I come at this from a deeply personal place, one that I am hesitant to share publicly, while simultaneously feeling as though it would be a disservice not to share. A disservice because my experience with my own (dis)ability contradicts the literature that is published about the condition that I now embody. And like disability rights activist Mia Mingus states, if we don’t tell our stories, who will?
Am I disabled? At first glance no. In fact many days I would even say no myself. Therefore, I often think that perhaps this is not the identity I should claim but rather more appropriate could be along the lines of neurodiverse.
However, when looking at the labels that fall under this title, there is nothing there that I can claim either. So what am I?
Everyone deals with something, and my condition is no more or less unique than others. It is just the one I am most familiar with and, therefore, feel most comfortable speaking about, however, far less comfortable sharing with the general public. That is because it is an “invisible” bruise. I do not walk around with a cane, wheelchair, or breathing device and for this reason can pass as a neurotypical, able female. And for the most part I am. I have a Masters in Science and a career as an acupuncture clinician in Manhattan and working on my second career towards a Masters in Oral History at Columbia University. Capable, competent, and motivated. However, this outward performance does not represent the entirety.
~Please listen to the next portion found in parenthesis via the audio file below. Once done you may finish reading by scrolling down to the dividing line, to pick up where the reading left off~
[From 1998-2002 I experienced two significant bike accidents, leaving me with two concussions, two fake front teeth—one that I mistakenly swallowed during a high school biology class—along with a wonderful blotch of a scar on the upper left corner of my head. Some have called it my Harry Potter scar, as it has the offbeat little side effect of glowing in the dark. However, even with these outward blemishes, I didn’t realize how much of an impact these accidents would have on my internal state, until I experienced over a dozen more while working as a professional aerial artist in my mid-20s.
After the first two accidents—one in which I seriously blacked out after riding down a hill on a bike that had no brakes—life actually still went on seemingly normal. Although, knowing what I know now, my new normal had changed. This change was labeled as “rebellious teenage” years. However, after viewing my body and brain as a science experiment over the last seven years of my life, I can now attest that my teenage angst was likely more of a product of inflammation in my cognitive hardware. And again, if I had known then, what I know now, I believe my adolescent and early adult experience would have been very different, less irrational, promiscuous, dangerous, and impulsive. Would I take back any of it? Nothing.
It wasn’t until 27, after experiencing more than a series of 10+ concussions within a year and a half from one another—concussions that were compounded by the inappropriate choice to not rest after each one, opting instead to continue performing as an aerial artist in effort to pay my rent—that there eventually became a time that I was forced to look under the hood.
I wanted to deny what I was going through for so long, hide it, not talk about what I was experiencing, laugh it off and shield it from my family and partner. But when the new lens I had of the world each day was one as though I had taken a handful of psychedelic mushrooms, I knew the current career path I was on, of dropping from 20ft from the air day-in and day-out, was no longer sustainable. Or when my partner in California asked how the movie was the evening before, and after my long circuitous explanation he looked at me and said “babe, you are having a really hard time making sense and finding the words, aren’t you”. To this I would respond defensively, attempting to re-explain. Not admitting for so long what I was truly experiencing— what I was experiencing when I would wake up in the middle of the night to watch my hands shake as is it was the early onset of Parkinson’s, or the experience of being concussed each time I would hit a pothole either in the car or on my bike. Or how a hard embrace of a hug from a friend could throw me off-kilter for 72 hours, leaving me for three days of concussion symptoms until I rebounded.
I should have stopped the circus sooner. And it was only to my detriment that I didn’t. There is the ego that is a part of our armor in the world, allowing us to be robust and full, and then there is the egoic nature that if not disciplined, can really do some harm. After so many hours, days, and years training, my ego was unwilling to throw in the towel. Finally getting noticed and scouted by two Vegas shows, finally getting the invite only Cirque du Soleil audition, finally making it on their roster in 2014. However, the day I made it through that audition, I got off the stage and went into the Vegas streets, seeing the all-too-familiar halo effect over the stimulating lights of the city and knew it was over.
The grief of losing an identity and career that was not only loved, but one I had become known for, is hard in itself. Losing my bearings on the world as the symptoms became increasingly worse over time, left little opportunity for me to grieve the conventional identity loss of career.
From 2015-2018 there is nothing that can sum up the experiences that I went through in a truncated paragraph. And therefore these experiences, along with the time, energy, and resources I had to invest to remediate and heal my condition, deserves many chapters of a book. In short, for two years I either didn’t sleep or slept a total of one or, at most, two hours per night. Anyone who has gone a few nights of sleep deprivation knows how harmful this can be to one’s sanity. I would be on the floor in my room at 2am each night crying, praying to have my sleep return. Claiming to whatever higher entity I had chosen that day that I would give over my life to help others if I could just sleep. There was nothing pleasant or redeeming about the experience. My only anchor was my unwavering spiritual practice throughout my life. After a year of realizing that neurologists, MRIs, CAT scans, psychologists, psychiatrists, and conventional medical practitioners had very little solutions for me, only further wasting my time on travel and resources, as well as the constant rewiring my story of trauma with each visit, feeding me medications that my body only responded with a “hell no”, I decide to redirect focus.
I moved back into the realm of alternative modalities, spending many months visiting neurofeedback specialist, craniosacral practitioners, hyperbaric oxygen treatments, acupuncturists, reiki masters, shamanas who would have me cry into a toy doll—which I still can’t believe I paid money for—as well as working with various entheogens such ayahuasca, MDMA and psilocybin therapy to support neurogenesis and help with bringing back my full spectrum of emotionality. This was alongside taking more supplements on a daily basis than my credit cards, and digestive system, could handle. I became obsessed with getting back to “normal”, getting back to my “old self”.
While this all helped to a degree, as I even purchased my own Hyperbaric oxygen tank and planted it in my very tiny room in San Diego to slip in and out of daily—I found that I was continuing to depend on other practitioners, or modalities, to get well. I had begun to realize that instead, I might just have to accept a new version of normal. That there might not ever be a getting back to an “old self”. And In fact, after having gone through such a rollercoaster of personal insight, the “old self” was also not what I was interested in becoming any longer, as I was opening up to a world of beauty that lived beyond my previous myopic existence.
Nonetheless, I continued to explore how to make the best, or dare I say “optimize” my new normal, expanding my knowledge-base with dozens upon dozens of books to read and learn how others healed from what were initially considered terminal and unlikely conditions to rebound from. At the same time, I closed the chapter on taking in any more literature about my specific injury, as it was all far too depressing and decided to not identify with the label anymore, turning off the news each time I heard a report of another football player’s health.
From the hundreds of personal stories I read that were published by others who healed from previous inconsolable conditions, I found some core tenets that I needed to adopt: agency, willpower, self determination, discipline, and a practice of gratitude, along with very strict diet, sleep, energy, and exercise practices. In the last sleepless year of my condition, I would get up out of bed at 3AM each day to dedicate the first three hours to energy work including qi gong, meditation, and breathing practices. As I decided that if I am never going to sleep again I might as well make the best of it. Ironically, relinquishing the compulsion to get better actually became the very thing that allowed my nervous system to rest, and therefore heal. Returning my hours of sleep to me each day. Tears streamed out of my eyes on the days that I began to sleep through the night.
I remember the year that I started to heal, when I started to apply for work again, write in full coherent sentences, speak in a way that did not solicit inquisitive looks. Then there became full days, weeks, and even months that I no longer remembered what I had previously experienced. It became a distant memory. All of it.
The more it became a distant memory, the more I started to feel safe to reconnect to community, love, and friendships. It has been, and continues to be that, through reconnecting with community, pleasure, joy, and intimacy that my nervous system has been able to recalibrate. “Waking me up” to how healing can not be done in isolation. That “self-care” does not look like candles and essential oils. That self-care involves ample amounts of community care and support. As an inherently community oriented, people-centric person, it took me too long through too many misleading suggestions from the expertise of others for me to find my way back to this realization.
However, as anyone with a head injury knows, there is always the lingering danger of elbows, unforeseen “shake ups” , trigger foods, or too much computer time, that can put one back into the difficult abyss for a few days to a week. But over time it gets easier, and these episodes and re-triggers become less, especially when following specific protocols in diet and energy practices. Of course there are always those not-so-fun conversations that need to be had with sexual partners. It starts when they grab the head to go in for a kiss and I freeze up, rapidly explaining to them why they can’t do that, why they can’t touch my head. Attempting to hide my “disability” up until the point where, for self-preservation purposes, I no longer am able.]
I live a life of restriction, by way of both choice and necessity as the alternative, I have painfully discovered, would be of dire consequence. Leading to some pretty significant outcomes that could be very hard, and costly, to rebound from. Some of these restrictions entail no inflammatory triggers- no alcohol, no dairy, no wheat, no artificial anything, no pharmaceuticals, no sugar- not even honey, sugar alcohols or maple syrup. Caffeine should also be on this list but I’m still willing to pay the price for this remaining vice.
What these restrictions also entail is no jostling- no jumping, running, moving too quickly, or even hard forms of gyration (aka much of what sex requires).
There is fragility to my system that I need to pay the utmost care to. My body is the thing I am in the deepest relationship with, and while sometimes it can make me feel very at home and content, being that I know myself so painstakingly well, other times, after years of trying to biologically “hack” my system on my lonesome, it has also left me feeling incredibly isolated, as always attempting to prevent a potential flare up has led me to never getting too close to, well —anything. Leaving my dating life sparse, to say the least.
However, I have learned that the constraints I have made for myself have far less to do with preventing my own suffering than about the impact I have on those who I encounter. If I want to prevent the outcome of being irritable, rude, annoyed, depressed, and sad everyday, I stay regimented, because, for obvious reasons, the alternative would be even more lonely, as no one wants to be around a person with a bad attitude. Therefore, I need to make these choices not only because I care about my body and my health but because I care about how others feel when they are in my presence. And since we never know what another could possibly be battling at any moment, I believe it is our responsibility to one another to show up as caring and loving as possible, because if not, our effect on another could potentially have harmful outcomes on someone else’s life, work, or self approval. I say this coming from both personal and learned experiences.
I’ll never forget having read the Buddhist teacher, Jack Kornfield’s book “A Path with Heart” at the formative age of 19, after dealing with another condition that is not the premise of this specific story. In the book he shared vignettes of various stories illustrating lives of those who were changed by another. One in particular called out to me. It was the story of a high school boy who had been intentionally bumped into by a group of other high schoolers while he had a stack of books in his arms. As the books came tumbling, there was one boy from the crew that turned back around to help and they ended up becoming friends throughout the following years. Four years later at graduation that boy who had his books knocked from him became valedictorian. In his graduation speech he commented how in Freshman year, one afternoon he had decided to kill himself and was on his way home to do so. However, it was through the generosity of the boy who had helped him after he and a stack of books came tumbling down, that he considered otherwise. It was through the power of human connection and kindness that he was able to reconsider his plans.
Something similar has happened to me. After two years of only sleeping one hour a night due to more than a dozen head injuries, I was hanging on for dear life. Literally and figuratively. I was on the subway, holding the overhead bar, ready to nearly turn in the towel. Exhausted and beyond myself. There was a woman in the seat below where I was standing that must have seen, felt, my despair as she looked up, smiled and said “honey, we are all in this together.”
It is amazing what another person’s shared sentiments can do for the human spirit, stoking one another’s fire to presevere just a little bit more. It is for this reason that I echo Mia Mingus’s sentiment that disability justice is just another word for love. Because what more is there?
Although, I don’t think I am quite ready to speak at length about my injuries, as I have seen the reactions on people’s faces when they respond with an “oh my god” or “that’s not good” after my sharing. Therefore, I have decided that until I am truly ready to bear the burden of those reactions, I can instead speak about my experience less overtly. Because I know what I deal with and hearing or seeing the fear, or sometimes even the care, in other people’s eyes, doesn’t always support my healing.
But here I am, and now it is about what I do with this life, this body, these choices, right? Life is all about choices and I can either have a pity party or move forward in big and beautiful, resilient ways, even when it’s tough. Even when I can’t bear another day. Because, quite honestly, what other choice do I have? To wake in misery every day at the discomfort of the body I live in, no longer capable of functioning at the normative level that society requests us to persist?
No, I will not linger in misery, as that is far too easy, and I know how fast that ripples into the world, rippling the very energy that I live my life in resistance to. Instead, I opt for the opportunistic inspiration in all of life’s trials and tribulations. As I truly see all experiences, however unwanted they initially might be, as a chance to deepen a relationship with self, to shed a skin that was no longer quite fitting. Like a pair of jeans a decade past their prime, high-time to discard.
Some days, as I am sure is the case for many people who might not have such a wonderful health prognosis, it feels as though I am attempting to do everything in my power to outrace the clock, hoping to outwit my body with all my little health hacks and optimism. Other days I’m defeated and ready to throw in the towel. However, like my father said to me, from years of experience dealing with his own trials and tribulations “it’s too easy to give up”. And since I am someone who is unwilling to take the easy route, I will keep smiling, keep working with the life that I have been granted. Because again, what alternative do I have?
I believe we are dealt various experiences in our lives that can either make or break us, as at every juncture, twist, and turn life is about choices and the way we respond to our cracks, our breaks. As I honestly believe that is up to no one but ourselves to direct the course of each of our journeys. Just like any muscle, I have come to see that our ability to thrive in the face of all odds requires everyday mental conditioning and training and perhaps a faith or trust in something bigger, as well as not falling victim to the mentality of hopelessness.
Perhaps I also come from resilient genes, genes that believe nothing is impossible. From people that told me, it would be “ok” whether it was a gash in the head or something worse. Genes from a mother who lost her parents at four in a vehicle that she was also in, to later end up in various family member’s homes that led to a wide spectrum of sexual abuse, causing her to run away and start over, somehow still trusting in human goodness. Or the genes of a father, whose childhood home was gambled away by his father, followed by losing his mother compounded by a jealous boyfriend taking the life of his sister, left caretaker-less and homeless, only to add insult to injury with a severe car accident and prognosis that he would never walk again. A prognosis, much like my own, that he also chose to not put much stock in it, leading him to a 40-year career that never had him working inside at a desk a day in his life. A father who’s words of advice were “just make sure you laugh with those that you surround yourself with every day”.
I come from a gene pool—my parents specifically—that, with all their adversity, persevered against all odds, never falling prey to the bottle, as I know can be so easy to do without the familial support in such devastating scenarios. Therefore, maybe my leaning toward a sense of hopefulness for my own repair descends from them. Maybe? I can not tell. Nor is their story mine to tell much further. That is for another time and place. But it is my belief that we are what we believe we are and, for this reason, telling the abridged version of my story in this way is an attempt to push back on any prognosis. Believing that every choice that is made can be another choice in one’s favor, if truly believed.
Disability activist Gracen Brilmyer states that they “didn’t need to be whole” as so often “wholeness” doubles as “perfection” falling into our culture’s false ideal of normality, having many people chasing something that has no factual existence. When we let go of that chase, we give ourselves the permission to live the very lives we have been granted, discovering ease, grace, and a sense of home in the body we have been afforded. I can not help to sigh with relief at this, coinciding with turning off the podcasts and closing the “how to” books of what I need to do to “fix” myself and instead take immense comfort in knowing that what I have become, is still just as workable, just as good. Because it has to be. And isn’t that the life we want to be living? Actually allowing us to do this version of life as we are, omitting the anxiety of chasing after a version that was a past or even worse, a prefigured, fully imaginary version of a future self that one could never live to see? This seems to be the definition of insanity— “Insanity: the acting extremely foolish or irrational”. And what is more foolish than exhausting the life we have by hoping for a life we have yet to acquire?
It has taken me a while to get here. For so long, during my health hacks, healing journey, and constant pursuit toward a version of perfection—specifically a disordered obsession with physical perfection as this was a form of performative mask I could use to hide—every moment of my day was curated toward becoming a better version of myself. As the current iteration of self, in my “lack” or “deficiency” mentality, was “never enough”. Never healed enough, well enough, thin enough, skinny enough, kind enough, smart enough, motivated enough.
For too many years I would write down the evening before what my day would look like, from the specific food I would eat, to the timing I would eat it, alongside of my workouts, bedtimes, and waking hours. I can’t judge this version of myself as it was a part of my process to learn what worked for my new body. However, what I ended up becoming much more aware of is that my constant desire to become better was also a product of the high anxiety induced by a nation’s productivity culture. This heightened sense of always needing to “do and look” better, was in fact removing me from the day-to-day oscillations of what my body was really calling for and needed at any given moment. More so, it was removing me from the most important part of getting well: human connection, love, enjoyment, and honesty—with self and others.
Back in 2018 I read an article aloud to a yoga class I was teaching. The article was a discussion on Centenarian culture and what a “long life” actually entails—what one needs to thrive. There have been ambitious scientific studies attempting to rigorously distill what it was that kept people in Japan and Greece upright until well past their 100th year. Within such studies scientists looked at diet and water, and everything in between, to find there to be no magic elixir.
I remember smiling as I read on, a smile that came from a place of internal knowing that we had been getting it all wrong for sometime. The article concluded that not only were there no specific diets these older communities were following, but that they partook in so many of the activities we, in the U.S. see leading to our demise- they smoked and drank nightly. One woman laughed as she shared how she ate a pound of chocolate daily, accompanied by a photo capturing her toothless grin. The men in the article spoke how they had sex often and danced and sang nightly. In short, they enjoyed being together, not in the constant pursuit to excel or to produce more, be more, or achieve more, but rather, their biggest resource was one another. They baked bread when others had little resources to do so, and they lent a hand to one another on a daily basis. They not only made love daily but exhibited it through their every day acts of generosity and recognition for the other.
What the researchers, and myself through my own journey, have begun to realize is that there is no superfood, health, or life hack that can out-way the fortification that another human provides. With this, I am once again reminded of my own responsibility to smile, pause, and take time for shared moments with others, as this just might be the anti-aging elixir we have all been searching for.
Although I find myself to be doe-eyed and bushy-tailed about a lot of things, when it comes to the power of the story and its ability to translate a truth about the human experience that our minds often overlook, I do not think this is overly optimistic. I believe this is the way forward. And it is this type of way forward that demands the continual returning to listening, hearing, and bearing witness to one another from a place of not knowing.
This is the nurturance that I healed, and continue to heal from. As it’s from this place that lives the potential to inspire a healthier self love and community care, one that includes interdependence and stewardship of body, mind, and spirit.
I have to believe that we are each other’s life rafts. Experiencing and sharing in order to breathe life back into one another when the air has nearly deflated from all the trials and tribulations that is a part of this human existence.
And as the woman on the subway who resuscitated my one spirit and will through sharing her own candid sentiments with me: “honey, we are all in this together”.
Brilmyer, Gracen Mikus. “‘I’m Also Prepared to Not Find Me. It’s Great When I Do, but It Doesn’t Hurt If I Don’t’: Crip Time and Anticipatory Erasure for Disabled Archival Users.” Archival Science, October 18, 2021. https://doi.org/10.1007/s10502-021-09372-1.
Kornfield, Jack. A Path with Heart: A Guide Through the Perils and Promises of Spiritual Life. New York, N.Y: Bantam Books, 1993.
Mingus, Mia. ““Disability Justice” is Simply Another Term for Love”. opening keynote speech at the 2018 Disability Intersectionality Summit, in Cambridge, Massachusetts on Oct 13, 2018. The official video recording of this keynote can be found here. https://leavingevidence.wordpress.com/page/2/
Montepaone, Raffaele. “A Long Life” The Sun Magazine. August 2018. https://thesunmagazine.org/issues/512/a-long-life