Who am I? That’s a question I find myself asking more often these days. As a teenager, I dreamed of becoming a filmmaker. I devoured film books and made short super-8 films, and when it came time to apply to colleges, I applied to two. My only real choice was New York University’s Film School. As a safety, I selected the local University of Miami. Sure, they had a film program, but I knew I’d never go there.
When I graduated from NYU, I had a film degree, but I wasn’t automatically a filmmaker. That vision morphed over the years. As I took jobs and continued my education, I used film—and video, CD-ROMs, and the internet—in my professional pursuits, but I never became a bona fide filmmaker.
I wouldn’t say my dreams were shattered but they were re-sculpted to suit my skills, economic needs, and energy better. I always did have a difficult time with the physicality of filmmaking—coiling cables, carrying cameras, hoisting a shotgun microphone above a crowd. Back then I didn’t understand my physical weakness was due to progressive muscular dystrophy.
By the time I was 40 I had a great job as an educational multimedia producer for a college textbook publisher. I traveled, made a good salary plus an annual bonus, and felt intellectually and creatively challenged. Yet I got sick a lot. After a full day of work, I would come home and crash on my couch. Once I was diagnosed, I realized the stress exacerbated my health. I decided to quit full-time work to gain more control of my life.
Not an easy feat. But I soldiered on promoting my work and landing part-time gigs for nearly 10 years. Over that decade my body weakened. Then I saw an able-bodied friend, who had sprained her ankle, use a handicapped car placard, and I had an epiphany. What chutzpah! Or…was I selling myself short? Not only could I benefit from a car placard, but I probably was eligible for social security benefits.
Writing the essays for the Social Security Disability Insurance documents proved difficult. How could I explain that on some days I feel normal while other days I’m a complete mess? I knew my body was changing but I didn’t consider myself disabled. What became my mantra was the U.S. government’s description of disabled: the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.
I knew there was no treatment for my condition. My skeletal and smooth muscle would continue to diminish as well as my ability to maintain the active life I’d become accustomed to. I was approved for benefits in a brief amount of time thus solidifying the reality of my disabled identity.
I didn’t accept this new identity overnight. It was a slow, gradual acquiescence, punctuated by periods of situational depression when I struggled emotionally. At one point I attended a weekend retreat to help cope with loss and transition. I continue to have periods of questioning. Who am I now? Am I retired? Am I unemployed? Am I disabled?
Thankfully I have not allowed the disabled identity to permeate. Over the years I have started blogging, launched a podcast, and even make short videos for my YouTube channel. I continue to re-sculpt and adjust for changes. But deep inside I am still that creative person eager to communicate via written word and crafted imagery.
Leslie Krongold, EdD, lives in Alameda, CA, where she leads support group meetings for the Myotonic Dystrophy Foundation. She also writes a blog and produces a podcast series called Glass Half Full.
