One Year Later . . .

A year ago, I could still cycle for an hour at the gym. Dressing myself wasn’t an issue. I was making more of an effort to get out socially. Basic movement certainly wasn’t something that I was concerned about.

Stretching my hamstrings has always been
important for me as someone who has
cerebral palsy and spends most of his day
in a seated position -- in other words, legs
bent. Now, it's easier (and much more
comfortable) to stretch in my easy chair.

There were some signs that I was starting to struggle. I was doing less miles on the bike. There were days that putting on socks was a major project. Stretching was becoming difficult. But I wasn’t in a great place mentally and I had let some things slip. And I was approaching 50, as some friends enjoyed reminding me. I figured some physical regression was normal, I’d get past my mild doldrums, and that I just needed to get myself in gear.

Then the world stopped.

I still don’t think I can wrap my mind around how quickly everything changed. I remember joking with a buddy at the Y about how empty it was in the gym as fear of the coronavirus started to build, then watching news reports late that night—Friday, the 13th, which still blows my mind—as one thing after the other shutdown. I had a mental image of doors slamming shut all around me.

At first, I thought I was doing OK staying in shape during the pandemic. I had been doing my upper body workout at home before the shutdown, and the weather soon warmed up enough for me to ride my three-wheel recumbent cycle outdoors. I knew that riding the recumbent in my neighborhood wasn’t as good of a workout as riding the exercise bike, and I didn’t feel comfortable going to the bike trails—or know if they were even open. But I hoped I could maintain some level of fitness until things opened up.

I was fortunate to have a couple of vacations at the beach in the summer, and they were great. They were also the first flashing red lights that I couldn’t move as well as I used to. I had difficulty cycling on the streets down the shore and simply moving my wheelchair over the plush rugs in the rented house was hard. It was as if the new environment highlighted the gradual erosion of my abilities that was already taking place.

Faster than I ever imagined possible, my ability to move deteriorated. I began struggling to move my wheelchair as I typically do with my legs even at home. Going back to the Y in July didn’t seem to help much. I was having so much trouble, not only on the bike but with everything that it took to get to and from the gym, I stopped going a couple months before the second shutdown in December.

After I recently fell getting out of the shower, my mom was able to get physical and occupational therapy prescribed for me. Luckily, I got to work with a great physical therapist. In some ways, I’m re-learning how to use a body with cerebral palsy. I learned new positions that allow me to stretch more effectively. For example, stretching my hamstrings, which I had done on the floor for almost 20 years, had become almost impossible to do for any length of time because I had to constantly adjust my legs to stay stable. Now, doing the exercise on my easy chair actually lets my body sink into the cushions, keeping me in position.

Having returned to the Y when it re-opened in January, I’m already seeing an improvement in the amount of miles and length of time that I can ride the bike. I can’t do anywhere near the miles I used to do. In fact, I started out doing just 1.87 miles on the lowest levels in 30 minutes on the bike my first day back. (That “1.87 miles” included a few expletives when I first said it.) But I was happy just to be moving my legs, and I’m making progress. As a friend of mine texted—and I talk about this concept in Reach Past Your Limits—we have to reset the bar of expectations as we get older. 

My new sock donner not only saves me a
lot of time getting dressed, it relieves
plenty of stress because I know I can
get me socks on.

Physical therapy also introduced me to using a sock donner. The little piece of plastic with a rope has made my life significantly easier. Putting on socks had become a physical and mental strain to the point that I was strategizing how to limit the need to put them on—a bit difficult in a northeastern winter! Now, it’s easier to put socks on than it’s been in years.

From what the PT told me, she and her colleagues are seeing a lot of people losing some of their mobility since the pandemic started. In a way, it was comforting to hear that. Not because misery loves company, but because it helped me make sense of what was happening to me. The problem became more real, instead of me wondering, “What’s wrong with me?”

It also reminded me of a buddy of mine telling me years ago that he felt like his cerebral palsy was getting worse. He was probably going through much of the same things many others, including myself, are now dealing with. Disabled or not, this pandemic has cost much more than I think we realize.

All of these things, including the experience of working with an occupational therapist more interested in checking his watch than anything else, has ultimately reinforced much of what I say in the e-book. Exercising is only becoming more important in my life. Finding social outlets is more difficult, yet more necessary, than ever.

The last year has also made chasing my dream of building a rec center focused on the needs of people with disabilities something that pushes me even harder. Just remembering my buddy wondering why his cerebral palsy was getting worse makes me think of it. A place to go where other people might have been experiencing the same things could have only helped. Having a place to go might be helpful, too, for a lot of people.

One year from now, I’ll already be 50. By then, I hope the pandemic is behind us and we are all still pursuing our goals.