I’ve always assumed a fall could be in my future. I’ve had myotonic dystrophy—a genetic disorder that leads to progressive muscle wasting and weakness, among other problems—for 24 years and in that time, I’ve heard plenty of stories from people who have fallen. Initially, I didn’t give the possibility much thought. In the first home I bought in the early 2000s, my bedroom and office were on the second floor of an old Tudor style home. I thought climbing stairs was good exercise and I paid close attention to my movements when going up or down, a process that worked for many years.
And then, I fell. Luckily, I was going upstairs. It was most likely because of my foot drop. Still, it gave me pause. During the pandemic my partner and I decided to move to a universally designed home, which has an open layout and no stairs. Perfect, right? I thought so until the day I found myself horizontal on the concrete sidewalk outside our home looking at the sky. I was walking with a cane. I’m positive I did not trip; my leg muscles just gave out and my knees buckled as I fell backwards.
Thankfully, I didn’t cut myself or cause permanent damage, and the drama of an ambulance ride to the country hospital and a CT scan made for a good story. But I realized I couldn’t rely on luck to save me from the next inevitable fall. It was time for a more serious plan.
The next day, my partner and I found the walker we purchased years ago through a flexible spending account. It seemed like a good idea until I realized I couldn’t operate the hand brakes with my limited hand dexterity. The next option was a manual wheelchair a friend had given us just before we moved. I never suspected I’d need it so soon.
At home, I use a cane and walk carefully. When we leave the house, we bring the manual wheelchair. But I need more options. Now I understand why friends accumulate a wide array of devices. I’ve scheduled a mobility evaluation with my healthcare provider and am starting to look for a lightweight electric wheelchair.
I’ve tried to remain pragmatic during this lightning-fast transition. My partner asks if I’m depressed or scared or angry.
Right now, I’m grateful. My last fall could have had severe repercussions. I can sink into despair about that, or I can deepen my understanding of my disability. Already, I’m wondering which assistive devices will work for me. I’m also eyeing every building, restaurant, and hiking trail to see how accessible they are. Sure, I’d prefer to walk upright and not worry about balance, but this is my new reality. Once I identify the best wheelchair for me, I’ll partake in some type of ritualized demarcation to mark this rite of passage.
Leslie Krongold, EdD, lives in Mendocino, CA, where she leads virtual support group meetings for the Myotonic Dystrophy Foundation. She also writes a blog and produces a podcast series called Glass Half Full.
