When I was five, my mother raced me to the hospital in the middle of the night after a series of alarming gastrointestinal (GI) symptoms that left me keeled over and blacking out on the bathroom floor.
When I was nine, I chronically sprained my ankles when walking and had to wear lace-up ankle braces every time I played soccer. When I was thirteen, I swung a Wiffle ball bat in physical education and subluxed six of my ribs; every time a chiropractor popped them back in, they’d pop right back out.
On my competitive youth soccer team, I oscillated between playing as a central defender and sitting on the bench in pain. I traveled out of state with my team when I could play and when I could not. By age 12, I had disc herniations in my lumbar and cervical spine.
In my adolescence, I passed out in the mornings until my nutritionist increased my sodium intake to five grams per day.
Despite having lifelong pain that I thought was normal, unusual joint subluxations, and “mysterious” symptoms that confounded doctors, it wasn’t until 2019, after a rapid decline in my health, that I was finally diagnosed with classical-like Ehlers-Danlos syndrome (clEDS).
By age 23, I was forced out of the life I recognized and into one of chronic and severe pain, significant disability, and a new set of rules and regulations to live by. In addition to EDS-related joint subluxations and injuries, I also suffer from PoTS with syncope, low blood volume, dysautonomia, MCAS, IBS with vasovagal symptoms, Hashimotos, adrenal fatigue, generalized autoimmunity, frequent low-grade fevers, migraines, bouts of debilitating brain fog and inflammation, and a vulnerability to hypothermia and heat exhaustion.
As an artist, I process the world through creating and being able to use my body to do so. In 2019, I found myself in an acute state of impairment and pain: disabling lumbar and cervical disc herniations, radiating bilateral leg and arm pain and weakness, migraines, and ankle and knee pain. My usual ways of creating became untenable and without a way to express and make sense of experience, my quality of life was at one of its lowest. My wrists were limp from my neck injury coupled with Thoracic Outlet Syndrome, I cycled between icing either lying down or pacing, and I required extensive assistance to make it through the day.As my usual ways of creating became untenable, I experimented with different creative processes that were in line with my declining and changing function: drawing while lying down or walking, pacing with clay and imprinting it into trees outside, audio-transcribing prose, overlaying medical images on my phone from my bed, and working at odd hours, including the middle of the night.Eventually, I taped large pieces of paper to the floor so I could paint with my feet and use kinesthetic movements as a guide to mark-making. I remember feeling torn between the desperation to express myself and the cries from my body to focus on form—proper foot placement, soft knees, core drawn in, ribs anchored, neck in neutral—feeling plagued by the familiar conflicts and tradeoffs between physical self-maintenance and life experience and opportunity.Though it sometimes feels this way, I would be wrong to say that my body is destroying itself; it is preserving itself with everything it knows how and with the same fierceness that I work to preserve the parts of myself that allow me to love. A difficult but integral in-progress lesson for me is that my body and I are on the same team; the breaking days and painful movements, though dysfunctional, are still sincere attempts at movement and supporting my curious spirit.I have lost all sense of normalcy, and yet this abnormal medicalized life of mine has become my sense of normal. I have these sudden shocking grief-stricken moments when I observe something about my daily life from outside of my body and am gutted by the reflection back of how sick I am. I sometimes encounter this unbearable grief when I get ready for bed; the only way I can sleep is by getting fresh ice packs, putting a lidocaine patch on my back, turning on my electric stim tens unit, and wearing wrist, neck, and back braces.
There are so many private moments like this that people don’t bear witness to. And when people do see me, it’s not me at my baseline, but me having a better part of the day. When people don’t see me, I’m usually in bed with flu-like symptoms, doing physical therapy and other holistic or somatic treatments from home, or finding creative ways to safely do things that I love (i.e. cooking a meal, writing while my neck is in a traction device, painting with my ergonomic setup, or learning ASL from my bed).The invisible nature of having EDS is painful and isolating, and compounds the already painful physical symptoms. My appearance and how I am externally perceived do not reflect back the degree to which my life is disabled by EDS and its comorbidities. My art and writing give me a way to intentionally illustrate what my experience is like so it can be felt by others, and in turn, leaves me less alone by inviting others to bear witness to my degeneration and resilience.My disability is significant, but changing. I take my health extremely seriously. I eat an autoimmune protocol diet, choose supplements and holistic treatments over medications whenever I can, meditate, practice nervous system regulating exercises, and see an EDS-informed physical therapist twice per week in addition to my daily home routine of myofascial release, spine mobilizations, functional strengthening, ice, heat, electrical stim, Kinesio Taping joints, and cupping therapy. I also see a massage therapist and acupuncturist, in addition to my various doctors and specialists.
I take over 20 medications and supplements that are strategically spaced out and taken at six different intervals throughout the day. In the summer and winter, I have to limit time outdoors and use ice and heat, respectively, to externally manage temperature regulation. I stay up to date by reading current research pertaining to EDS and its comorbidities.
On my worst days, I cannot get out of bed without passing out and I do not have the cognitive clarity to read or write from bed. By prioritizing my health and listening to the various bodily systems that are compromised, I aim to have 2-4 functional hours per day.
On my best days, I work on my strength, cook all my meals, do the dishes, paint, write, read, and chat on the phone with a loved one.Had I been diagnosed and treated as a child, I could have learned how to better protect myself and prevent the severity to which I am injured now. My cervical and lumbar disc herniations started when I was a pre-teen, but I wasn’t officially diagnosed with them until I was in my early twenties and they had progressed to the point of not fully responding to treatment; my daily treatments and complete avoidance of sitting and bending over (I recline the passenger chair all the way back when traveling by car to my appointments) helps keep me at a baseline of just barely keeping my disc in place enough.
Through various treatments—daily physical therapy, strict rules about posture, using picker-uppers at home so I don’t have to bend over, daily ice and heat, medications and supplements for pain, electric stim, and meditative and somatic exercises—I am able to keep my pain at a level where I can sleep and think, even though it’s never absent.I am particularly interested in the process of grief as it relates to significant chronic illness. While it serves me to center my entire life around my health, my neurotic pursuit of wellness is also a defense against feeling the immense grief, sadness, and despair relating to my physical limits and how they impact my quality of life.
The last time I saw my EDS specialist in Cambridge, he told me that I was one of his few patients that does everything he recommends; he told me there was nothing more I could be doing and to keep making art, meditating, and going to psychotherapy to help me cope. While this wasn’t what I was hoping to hear from my doctor, it was also a nudge toward working with my grief as a pillar of treatment.I work with grief through my creative process of painting abstractly, writing, and studying the dialogue between the two. An excerpt from a recent art exhibition about my experience living with EDS (called To Be Broken In) states, “It’s been three years since I was diagnosed and in many ways, I still do not know how to live like this. I have tools now—awareness about my condition, the ability to educate others, and a long list of daily treatments—but they are not enough. Every day is a practice in finding reasons to love and in not giving up on giving my grief the chance to transform. There is no cure, and despite my laundry list of daily treatments, the closest thing I’ve found to a remedy is the courage to keep documenting my degeneration as it happens in real time and the strength to keep telling the story of what it feels like to be broken in.”A central theme in my life living with EDS is compromise. Every choice has a trade-off; by eating an autoimmune protocol diet, I can better manage pain, fatigue, and fevers, but I don’t get to enjoy food like I used to or connect with family and friends over meals. So, very occasionally I eat more flexibly to allow myself to participate in a meaningful social event. By maintaining a strict schedule relating to sleep, energy expenditure, and my fluid and electrolyte intake, I have some capacity for my creative projects, but I have very little capacity to socialize and almost all “normal young adult activities” (like going to restaurants or events, hiking, and traveling) cannot be a part of my regular life.
While my treatments keep me as well as I am, my fierce friendships are just as important to my health. Having people who listen to me, trust and validate my experience, keep me laughing, remind me of my strengths, and bear witness to my fight for my health provide me with the strength to keep finding joy and humor despite the pain, suffering, and fear.
Socializing just looks a little different for me; texting and phone calls make socializing more accessible and my friends come to me while I can simultaneously do treatments or lie down. One of my friends brings her dog over for “tummy time” or “potato time” (aka lying on the floor and chilling). Sometimes in social settings, there’s an explicit or implicit inquiry to justify my disability. I find the call to prove my disability to someone who has a limited idea of what a disability looks like—particularly when this relates to how my ability and energy levels fluctuate—invalidating and exhausting.
I stand because sitting poses a significant problem to my lower back, but if my POTS is flaring up, I have to lie down to avoid passing out. I take the stairs up to my apartment, but more than four trips up and down in one day increase my joint pain and destabilize my pelvis. I can walk but am limited to less than an hour per day or else my auto-immune symptoms of fatigue, weakness, and fevers get worse. I can carry a very light bag, but carrying a large package or a full bag of groceries can make my ribs sublux. My capacities and limits are fluid, and constantly changing. And my life becomes an intricate game of attunement and compromise. One that I have influence over, but can never fully control. I don’t need others to understand this necessarily, but I do need them to believe me and respect my changing assessment of my capacity.I wish people understood that disability looks different for everyone. It can be hard for people to understand the nature of my disability because I have severe versions of fairly “normal” human experiences. For example, everyone has their own experience of pain, tiredness, and falling sick with the flu. But when these same symptoms—full body joint pain, daily bouts of debilitating fatigue and weakness, and frequent “flu-like” symptoms with low-grade fevers—are pervasive and persistent, it’s really hard for people to truly imagine a life where these uncomfortable experiences become tortuous and oppressive. Especially when the degree of fatigue and weakness, for example, becomes so severe that it is not a type of tiredness one can push through (trust me, I’ve tried).
These symptoms can prevent individuals from being able to predictable show up for work or follow through with social plans. It’s also hard for people to imagine that these chronic conditions aren’t always 100% curable. It’s interesting to me how various illnesses and symptoms are received differently by society as a whole. There is a way in which a cancer diagnosis is received with such seriousness, compassion, and support. Whereas, more chronic conditions like Lyme or EDS-related illnesses are understood and received. I was first introduced to this idea by Andrea Gibson, an American poet who has struggled with Lyme, depression, and more recently, cancer. They spoke to the isolation of suffering from Lyme and depression juxtaposing the ways in which they were fiercely held by their community when they received their cancer diagnosis.Because disability looks different for everyone, so does accessibility. Most places that are accessible are geared toward people with wheelchairs or walking aids, and even then, many places aren’t. And while it’s very important to make places wheelchair accessible, accessibility looks different for everyone and so do the accommodations necessary for disabled individuals to live their lives (complete school, work a job they want, travel, try new things). Being disabled in the way that I am poses unusual obstacles regarding accessibility. I cannot bend over or sit for more than a couple minutes, so accessibility for me looks a little different than what is typically offered and doesn’t align with the invariable and simplistic vision of disability that our society has. It also doesn’t take into account other slightly more obscure factors of disability, like temperature dysregulation issues that can result in losing consciousness.I am deeply grateful that I have found a way to be a part of the world as a self-employed artist and writer. While what I do for a living brings me great meaning, there is also a deep sadness that I cannot pursue other interests or professions that would require me to have a healthy body and the ability to show up and perform predictably and reliably. In another life, I would be a physical therapist, psychoanalyst, chef, journalist, veterinarian, functional medicine practitioner, cyclist, and ceramicist, and I would travel and hike around the world.Although there is no cure for EDS, there is something just as important to my physical and mental health as my laundry list of daily treatments: I have people in my life who support me by listening, believing me, advocating for me, normalizing the ways in which I have to take care of myself, and helping make the world more accessible to me and other disabled people by having complex conversations about disability and ableism. I hope people with loved ones with EDS will take the time to read about EDS experiences and try to open their minds to the unique lifestyle and obstacles people with EDS face so that they can better understand and support their loved ones.Last summer, I wrote “Disability, Shame, and Cultural Perception.”To view my work, go to http://www.nweinart.com and http://www.berkshireresinart.com and follow me on Instagram at @nweinart and @berkshire_resin_art
