Composing the letters

I spent a lot of time on the power chair users forum. I kept getting answers that told me to  find someone who could fix bicycles and that person could probably adjust my joystick. That sounded plausible but I was concerned that the vendor and manufacturer might feel that if I changed the chair, I voided their warranty. Even though the users said that was not the case, I just could not take the chance. Besides I did not know who could do such a thing for me. None of the staff of the nursing home were allowed to adjust anything on the chair. It was maddening.

I went back frequently to the manufacturer's consumer forum to see what was going on. As I said, it was difficult to post. Many times the power chair user (employee: whose website was set up by the manufacturer) who supposedly ran the forum, did not get back with me. I started to email him directly.

I was on those forums every day and sometimes many times a day. I really was looking for insight. And, yes, I was desperate.

I kept waiting for the vendor's tech to return to adapt the chair. But I heard nothing on that end.

In the meantime I was getting a little bit of occupational therapy on just my left hand. That's the hand I use to run the joystick. Any stretching and exercising would loosen it and make it easier for me. I just wondered about all this therapy all of a sudden. Getting a month of it to transition to a new power chair was one thing. But getting occupational therapy again after so many months, was quite another.

My birthday was in September. My friend Beth visited before my birthday. We did a little shopping and went to lunch. It was fun and uneventful, there were no crashes. But I was running the power chair in a lower speed to prevent them. My hand was still sitting on the joystick which to me was an unsafe way to operate it.

Then my sister visited around my birthday and we had a good time. We had no misadventures. Oh well, that is not exactly true, I had a little problem on the ramp going into my van. I ended up getting my hand stuck on the joystick and had to go down it backwards – too fast. I knew I scared my sister to death. I wasn't trying to. With my hand on the joystick, I was applying pressure when I did not realize it which caused the joystick to be jumpy. Luckily, neither of us got hurt.

By the end of September I checked online to see if Medicare was paying for my occupational therapy sessions. I noticed that the first two weeks had been denied. That did not make me happy. I did not want to see the nursing home get stuck with a therapy bill. I also knew I was already into my third week and it would be denied also..

I shared this news with the regional long-term care ombudsman. She, of course, told me not to worry about it. But I knew therapy would end. Any therapy is physical but it is also mental. You see that therapist and talk with him/her regularly. I didn't want to get dependent on another person to make me feel better about the power chair. But the OT assistant was not commiserating about the chair. He just told me he did not understand the whole process. I thought to myself maybe I should write a book about my experience so that other therapists could learn from it.

After the power chair users on the forum suggested I write to the "powers that be" that after four months my new power chair still needed further adaptations, I started to rough one out in my mind., Now I just wondered what I would write and if anyone would listen.

All I knew was time was passing.

Another trip to the beauty shop in late October to get my hair trimmed and get a perm reminded me how difficult it was to back that power chair up to a beauty salon shampoo bowl. For the second time, we bagged the controller on the back with plastic. But then, when we tried to take my backpack off of the chair. I actually have two on the back and we wanted to remove the lower one. It was held fast. When the older tech, John put the new joystick on – somehow he ran the wire right through the strap of the lower backpack. We could not get it off. It was so embarrassing!

I had to tell the nursing home and the vendor by email that I had another problem. I also told the power chair users. This whole thing with the power chair almost seemed funny – if you were an outsider. It certainly wasn't funny on the inside.

I started working on the letter. My goal was to make it one page and get most of the story in there. It was a job.