Returning to a new life
by John Pixley
This will work. It has to. I know it will.
After all, it worked for Aurora. If it could work for Aurora, it could work for me.
Aurora was a disabled girl who I met with her mother in Grass Valley up north.
My friend Carl thought that Aurora and her mom should meet me. This was a year or two or perhaps three before my spinal surgery four years ago, back when I was able to be much more independent and went all over – often a few miles in a day - in my wheelchair.
Even though she was non-verbal, Aurora was clearly bright and full of life. She was fascinated by me, looking up when I spoke and reaching out for the joystick on my chair. What I found fascinating about her was that she drove with her head.
It was literally “Look Ma, no hands!” When we went on a wheelchair-accessible trail after having lunch, Aurora would laugh and speed off, leaving the rest of us, including Carl and me in our wheelchairs, in the dust. She was pressing her head against sensors in the headrest on her wheelchair, but it looked like she was being propelled by magic. Even more remarkable was that Aurora was able to control her wheelchair in this way even though she had a lot of involuntary movement in her body – more than I did then and even more than I do now. And she made it look so easy.
I had no idea that day that I would need to drive my wheelchair with something like this. Yet, here I am, back at Casa Colina Hospital, learning how to drive my wheelchair with my head. And finding out that it isn’t so easy.
I really didn’t expect to have to be doing this. Two years ago, I was thrilled to find that I had recovered enough from my surgery that I was able to go out in my wheelchair on my own. I couldn’t go nowhere as far as I used to, but I was able to go around the neighborhood and to the Village and Pomona College. I was able to go on my own to a movie or to s concert at Little Bridges, and I even made it to and from Memorial Park on the Fourth of July. It was tremendously liberating to be able to go out on my own, even when I was just tooling around my neighborhood.
But over the last year, even as my strolls around the neighborhood were more vital during the lock-downs, I had more and more difficulty on my outings, not being able to get far. Perhaps it was because I stopped going to therapy and got lazy during the pandemic, but, for whatever reason, I began having less strength, less flexibility, in my left arm, my only functioning limb now, and had a hard time driving my wheelchair. I eventually couldn’t get to the Village and then up to the railroad tracks, much less Memorial Park.
This was very upsetting, but I tried my best, until I went out on a warm day in February. I was going along fine, happy that it was finally warm enough for me to go out, when, several blocks away from my house, my arm froze up, gave out. I barely got back home, somehow, with people honking at me, asking if I was okay.
This left me very shaken, scared to go out on my own again. It was a lock-down in a lock-down.
I felt even more trapped and knew I had to do something.
This is how I ended up back at Casa Colina, where I got a lot of help in the year or two before the pandemic as I got back to life after my surgery, where I went in my wheelchair two times a week for years before my surgery to work out in the gym and to visit my friend Robyn when she got M.S and was staying there when it looked quite different, where I went to nursery school with Robyn when she was able to walk before her rheumatoid arthritis got very bad. I was back at Casa Colina to find a way that I can go back out on my own in my wheelchair.
Which is why I’m now learning to drive which my head, like I saw Aurora doing. It’s a challenge, frustrating, I have to say – not nearly as easy as Aurora made it look. But, then again, as Aurora showed me, it can be done, there’s a way for me to do it.
I keep thinking that doing this would be easier if I was not wearing a mask. Wearing a mask makes it a bit more difficult to see where I’m going, or it makes me have to think more about seeing where I’m going. Either way, it makes learning a new way to drive all the more of a challenge. It also reminds me that I’m doing this in a very momentous time, when we’re all learning, learning as we find our way out of this once-in-a-century (hopefully) pandemic, find out if our lives will be different or will go back to the way they were.
We are all learning. When will it be safe or feel safe not to wear masks, regardless of what the C.D.C says and the state opening up next month? When will we be able to go to outdoor concerts? Will we be able to go performances at the colleges when they open in the Fall – if they open in the Fall? So many questions we are trying to answer.
As I try to learn this new, strange way of driving my wheelchair, of going out and getting around on my own, I am aware that it’s strange that we’re having to find our way, to learn how to go, back to normal. Or a new normal.
It has felt strange to see television shows end their season, to see commercials for summer sales, complete with scenes of people traveling. It feels strange that summer is coming, that summer will feel something like a real summer, when we will hopefully have backyard parties and be able to go to the beach, whether or not there will be concerts and performances around town and as we wonder whether to go to see a movie at the cinema or stream it at home.
It feels strange and difficult, but I’m not alone, we’re not alone and it can be done.