Learning to not walk funny is a process, and it is taking hours of focused training time. All of this is done in the home. I exercise on the treadmill, and I stand by a chair to do some of the work. I’m up to eight minutes on the treadmill, and it is still taking ten minutes per session for the rest of it. The goal is to get up to thirty minutes of walking time per day. At the ten-minute point I’ll try to leap to fifteen minutes twice per day, and then up to thirty minutes in one session per day.
The truth is that this is eating my day.
Ticktock, the clock goes round, and as it does, I still walk funny. I’ve asked the physical therapist if she sees it, and she says no. I know that when I get up from a chair, I walk goofy. So, I don’t want to sit that long. I think I’m becoming impatient with this process. When I think about it, I have to admit that it is better to be here at home than stuck in a rehab center. I can do this at home.
I’m caught up with some things, still catching up on taxes, and now I find myself attempting to figure out how to get my hair cut and my hearing aids checked. When I stop to think about things, sending me home was needed, and I need to have a driver on call until I can really walk again. Being mostly blind and not walking in a steady manner is not a good combination. Not walking well shows me how bad my vision is. It is scary to see it.
When I take notice of what it is I’m not able to see, and I allow myself to think about what fully sighted people see, I cringe. What I see when I look is the places I can’t walk safely. This last week, while heading home from the UMC in Utrecht, I was confronted with a construction mess. For sighted people who could see, the process was easy. I had to figure out that I couldn’t get to the tram and would have to take the bus down one stop, get off, and then walk to where the trams pulled in. I got lucky, and people were helpful. The shock of it all is never a good thing. Someone with Usher syndrome told me that for her, every time there was more vision loss, there was more trauma.
While I’m not affected by Usher, I do understand the risks involved in going out when you can’t see or hear as others do. It is important for me to be steady on my feet, and to get back into a safe walking mode.
As much as I post on this—and I may sound like a recording or a broken record—I have to say it again: being disabled is traumatizing.
Last week I had to call for help with something. The woman at the other end said, “Perhaps you can ask your neighbor for help.” I replied that I’d done that earlier in the week, and that while my neighbors are kind to me, I am asking you for help.
G: How would you feel if this was said to you constantly?
Rep: Oh, I understand.
G: No, you don’t.
She had nothing to say in response. She had not a clue about what I deal with daily in an abled world as a disabled woman. She never will, unless it happens to her or to someone she cares about. I hope that someday, when she’s still got all her marbles, she’s bugged by her neighbor.