How My Disability Helped Me Through The Pandemic

The only way I knew it was early morning was because there were fewer nurses checking on me. I couldn’t speak. There was a breathing tube going into my mouth and another going into my nose, among dozens of other tubes, wires, and sensors attached to my body. All of them reminded me that my pool diving accident on 1st June 2002, was not a nightmare I could shrug off. My left lung had collapsed while I was drowning. My right vocal cord was now paralysed; the nurse who tried to suction my lungs got the tube stuck before turning the suction on. As I lay there, all I could think was, I have to live, and I have to leave.

I did live, after two weeks on life support in the ICU. My body, paralysed from the shoulders down, felt like absolute nothingness. It was as if it belonged to someone else, and I was looking down on it from the eyes of a stranger. I had survived both the accident and the surgery the doctors had said I might not live through; to have defied those odds gave me hope. But I also realized the enormity of what it meant to survive — it was daunting, to say the least, and I had to force myself to stay calm and focus on what I needed to do to stay alive. Life felt too ragged in this reality, too unreal, like a slap in the face that I never saw coming. I was 24 years old, and my days as I knew them were done. I’d have to start over, and create a new version of myself. It was terrifying, but I gripped on to that sliver of hope. I was determined to live a full life, knowing that imagination and creativity would be essential to finding happiness again. 

I watched the Manhattan skyline through the windows of the ambulance on my way to my two-month stay at Mount Sinai Hospital, thinking I had the right to dream of what greatness was to come. New York, my home, is the embodiment of resilience.

Adjusting, redefining, adapting — whatever word you want to use to describe surviving a traumatic event takes time. I couldn’t move or feel 99 percent of my body after having shattered two vertebrae in my neck. Rather than sleep at Mount Sinai, I’d stare at my hands. Telling my fingers to move was like trying to open a door using my eyesight. Everything I knew about what it meant to wake up, go for a run, and take a shower before walking to work, felt like a different lifetime. I often grappled with picturing that past, seeing the present I had, and wondering if it was too much to dream of more. Resilience is a muscle that grows slowly. 

The next three years were intense. I moved back into my childhood home in Bronxville, New York, focusing my energy on the only thing I could at the time: hours of daily physical and occupational therapies. Maybe I worked so hard at rehabilitation because I felt a deep sense of guilt. When you survive a near-death experience, you are left with near-death emotions. All I could think about was doing whatever I could to get better, trying to live up to all of the effort it took the surgeons and doctors to send me home so that my mother, grandmother, father, sister, and brother could take turns sitting and sleeping by my side. How could I ever be good enough to show them what their caring meant to me? What could I do to make them un-feel the trauma of hearing what could have happened to me? 

But it got better. 

After my accident, I didn’t leave my house for three years, except to go to the hospital for therapy. The world was inaccessible as I knew it then, so I stayed home in my own personal quarantine. In those endless hours of daily exercise, I set small goals to feel a sense of accomplishment. Though my situation was frustrating, the days steadily grew more interesting and I became more patient. Instead of focusing on what I couldn’t do, I moved my attention to what I could do. 

I began keeping a journal and corresponding with friends through emails that would update them on my life. Little did I know, my emails would be forwarded to people I had never met, and when I skipped sending them for a week, strangers would write to me asking why. It felt good to stay connected to my group and to meet new people, even if it wasn’t as it had been before. I was learning that I was still the same person, albeit in a different body, and that was okay. In fact, my thought processes were probably better than before: I felt more in tune with my mind, and more inclusive about what it means to have a life. It also made me realise that I was worthy of speaking up for myself and of wanting to be seen. 

My spinal cord injury had a profound effect not only on my mobility, but on my skin. My body lost the ability to sweat, to regulate itself with changes in temperature. I looked 10 years older. My skin was red and had patches that were either too oily or too dry. Finding natural solutions to this issue became another step forward. While working from a hospital bed, I started my skincare line, Clark’s Botanicals, in 2010. The daily ritual of skincare allowed me to regain some power over what I could do without needing assistance. I had a new sense of self with CB, and even bigger goals.

Eventually, my new business and my long-term correspondence became a book proposal that turned into a memoir, Walking Papers: The Accident That Changed My Life and the Business That Got me Back on My Feet. Some of my mobility returned, like the rotation of my right wrist, and I was able to use a fork on my own. My arms and core grew stronger, which made it easier to sit more comfortably in my wheelchair. It took a lot of work to start my life over again, but my personal and professional routines became more about experiencing “and” rather than “or.”

COVID-19, and the quarantine that has come with it, has had me revisiting these defining moments again. The images of people on ventilators in the hospital have made my mind jump back to my experience and the fear of being tied to various tubes. Staying home has rekindled old ways of keeping myself busy so that I don’t feel too overwhelmed. Researching and reading about vaccines has brought the same excitement and exhaustion that stem cell headlines once did when I thought about re-growing the nerves in my spine. But the big difference is this pandemic is happening to all of us, all at once. I look at that in a positive way. Our feelings of loneliness, anxiety, and despair are not a singular weight as they were for me following my accident. Knowing that helps to create a sense of normalcy in an abnormal time. We understand, more than ever, that we’re not alone.

The first few months of quarantine were not easier for me, as might be assumed, though. In fact, hearing the news announce mortality rates and how quickly the virus was spreading made me feel fragile and hyper-cautious. But work was less of a shock. The new inconveniences that many people were feeling is what living with a disability is like all the time. Whereas the disabled community has always pivoted to the fluidity of different situations, now everyone had to learn to adjust to Zoom calls, masks, and all the different ways we were making our social circles and surroundings flexible. This shift actually benefited my business, because we were accustomed to the mindset that things constantly change. Working from home was our status quo, and not only did we grow, but the number of teammates grew too. Respecting that life is imbalanced allows for a more balanced workplace: It gives everyone the grace and community needed to find solutions. No one is ever an island, even at home. 

As we look forward, it’s wonderful to see us come to a place where we can think about life after lockdown — where we can think about life, period. I’ve come a long way since my own near-death experience and quarantine, and I see how it’s possible to survive this moment, too. Inconveniences are a part of my everyday life as a wheelchair user, but so is adapting. I am not going to stop myself from doing what I want to get done. The future isn’t lonely anymore; no longer tied to a sense of longing for the past, my partner and I pass fulfilling, happy days with our families. And maybe there won’t be a general need for hyper-flexibility once this pandemic is over, but that doesn’t mean that the lessons we learned about making society more accessible should fall away. If anything, it should inspire a conversation about how to make accommodations permanent for those who need it. 

There is power in adapting, however difficult it may be. There’s also life after tragedy and a future that comes after grieving what was lost. That future is ours to build together, and it requires empathy, strength, and compassion. I still look over the New York City skyline and see its resilience. Only now, the chance to begin again is everyone’s to grasp.