Patient’s Perspective
The Patient’s Perspective section is authored by Elizabeth Jameson, an artist, a writer, and a former public interest lawyer; she has written about illness and disability in publications such as the New York Times, British Medical Journal, and WIRED magazine. In 2016, she delivered a TedX talk, “Learning to Celebrate and Embrace Our Imperfect Bodies.” Her artwork creates interest and curiosity about the imperfect body, and serves as an invitation to open up conversations about what it means to have an illness or disability as part of the universal human experience. Her work is part of permanent collections including major universities and medical schools throughout the nation. Her website is www.jamesonfineart.com
Before my journey with chronic illness (MS), I was an avid member of my gym and even referred to myself as an athlete. Once the initial shock of my diagnosis of MS wore off, I went back to life as usual. I still continued to work out. The same gym. The same exercises. The same routine. I was not going to let my diagnosis stop me. Luckily, my disease cooperated for a while, and I didn’t need to change my ways. But over time and as my disease progressed, I realized that I could no longer consider myself an athlete, let alone an “exercise enthusiast.”
As I went from walking with a walker to then using a scooter, and then to an electric wheelchair, the ability to use my body became more limited and I could not keep my gym membership. Now I am a quadriplegic with no ability to use my arms, hands or legs. I live my life in a wheelchair. I cannot flick an ant off of my knee or scratch my nose. Long story short, living in my body is an endless, dizzying rollercoaster ride.
Believe it or not, I have a wonderful quality of life. I’m currently healthy and I can embrace my life as well as my body. I continue to be ambitious in my work life and creative pursuits. There are several reasons for this, but I attribute rehabilitative professionals as one of the keys to my happiness.
Shortly after I was diagnosed with MS, I was forced to make a shift from being a public interest lawyer to becoming an artist and writer. I now write about the experience of chronic disease, and my art explores the narrative of illness. This interdisciplinary creativity is a daily process that has served to motivate me to continue my pursuits despite the progression of my disease. Because I have a progressive illness, I am not going to improve by the usual standards. I have the great fortune of working with rehabilitative professionals who also utilize interdisciplinary approaches in addressing my spinal cord injury. They are adaptive and fearless. They also actively encourage my input as they design new approaches for rehabilitative medicine.
For those who see rehabilitation as a linear progression of “getting better,” I’m a nightmare case because I will never get better. But I found professionals that approach rehabilitation in non-linear terms: they embrace the idea that rehabilitation must involve creating a supportive culture, and they are committed to researching new treatments that improve patients’ lives. They define success as my ability to work and improve my quality of life. They think outside the box.
Some of the most creative people I’ve ever met are not professional artists or designers; they are physical therapists, movement specialists, and pilates instructors. For me, effective rehabilitation relies on their openness to imagination and innovation.
I work out five days a week with these specialists. This is not true for so many people who live with spinal cord injury, and I don’t take it for granted. On the contrary, it’s something I am thankful for every day of my life. My insurance does not cover many of the services because they are not deemed “medically necessary” or because of licensure issues. But these services are essential in their ability to keep me functional and ambitious. When I have the ability to move my body and work closely with professionals who care about my well-being, I have the opportunity to enjoy life to the fullest even as I become more disabled due to progressive illness.
According to the World Health Organization, the definition of health is, “…a state of complete physical, mental, and social well-being, not merely the absence of disease or infirmity.” Rehabilitation, physical therapy and other forms of adaptive movement have been instrumental in transforming my life in achieving that definition. The work of rehabilitation specialists is invaluable–it has allowed me the opportunity to be a fully functioning individual while still acknowledging my limitations. While my health certainly does not look like others who run marathons or enter swim meets, I experience wellness and joy in my life, in large part due to the creativity of rehabilitative specialists.
