Walking to Wheelchair – My Story of Transitioning

In honor of today being International Day of Acceptance, I thought I’d talk about how I transitioned from walking full time to being completely wheelchair bound. This is my personal story of how my mobility has been affected by the progression of Limb Girdle Muscular Dystrophy type 2A

Having a parent and an older sibling with the same disease, I understood from a pretty young age that I would eventually be in a wheelchair. Our family first noticed signs that the disease had passed to my older brother while my mom was still pregnant with me. So for me, at least, it’s always just been an accepted fact of life.

My early memories of being different from the other kids are muddled. In elementary school, I knew I couldn’t run around as fast as the others at recess and gym class.

I do remember going to middle school and having to deal with a two-story school for the first time. We lived in a one-floor home (where I actually still live today!) to accommodate for my dad’s wheelchair, and my elementary school was also a single-story facility. I remember the struggle of taking one step at a time. Right foot up first, then the left. Both hands pulling on the railing as best I could, looking more like a mountain climber clinging to a rope than a preteen trying to make it to Home Ec.

Part of my particular condition is the weakening of muscles in the hips, which meant balance has always been a struggle. My life could be described as a series of bumps, bruises, and falls. When I was around 13-years-old, it became more difficult to pick myself back up off the floor. I began needing to use other items, like a chair or a desk, to stand back up. By the time I started high school, it became a two-part, slow moving process: floor to chair, chair to standing.

I remember taking the staircase on the first day of freshman year. At some point I ran into my brother, who was a senior, and he asked my “why the hell I wasn’t using the elevator”. For the next four years, I had my own elevator key and a constant gaggle of classmates trying to catch a ride with me. It was a minor perk.

It was during my high school years when I developed the worst symptom of having muscular dystrophy.

Fear.

Living in my world meant being hyper-aware of how close every other body and object was, out of fear that even the slightest, sudden change would make me fall. And it wasn’t an irrational fear really; we often joked that if you looked at me the wrong way, I’d fall over. Crowds were terrifying without a safety net of other people. I needed them to help me physically, sure. But I needed the strength in numbers to protect my emotions from the embarrassment I felt from falling, or someone staring at the funny way I walked, etc. Concerts, amusement parks, shopping malls, and any other place that promised a big group of people gave me heart palpitations.

But I had some of the greatest people as friends, who were my saviors. Who never treated me differently. Who loved me, unconditionally, even if I was an overgrown weeble wobble.

After high school, I commuted to college instead of moving away. Part of that was out of the fear of needing a wheelchair to get around (I was SO stubbornly opposed to it at that point). The other part of my decision was because of a boy, my first “real” relationship. Both reasons for my decision were pretty dumb, in hindsight. But I digress . . .

Despite my fears of doing anything alone, college was amazing. But, without a wheelchair, it was also exhausting. I drove my car from building to building so that I was always in the closest parking lot for class. Climbing in and out of desks, climbing in and out of my car, and walking back and forth was too much for my body. Eventually, it caught up to me in October of my junior year, in one of the most mortifying ways.

Stay tuned for the second part of my story! 

What is International Day of Acceptance?

I decided to share my story, as a wheelchair mom, in celebration of disability acceptance. January 20th is a day dedicated to the social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance. Learn more on the ADA Legacy site.