The Start of a New Phase

Friday, April 30

5:15 pm

It’s been a whirlwind since Tuesday, trying to adjust to being home and establish some sort of schedule or routine, and being responsible for my own time and my own exercises. Boredom has become an issue. Because it takes so much energy to do anything, I can only do one thing at a time and have trouble concentrating for an extended period. I have found that listening to audiobooks is something I can enjoy that doesn’t require too much mental energy.

It’s also for this reason that I have caught myself lately sitting in my wheelchair staring straight ahead, much like you might picture an old person in a wheelchair doing. I used to think that this indicated a lack of motivation or something of that nature, but I understand it better now. I don’t sit idly because I’m not motivated; it’s that the next step, in whatever I’m doing, is so hard that I have to take time contemplating doing it first. I have to mentally walk through the sequence of any physical task, however minor, before I start it. Often the order of sub-steps in a task is crucial in a way that it wouldn’t normally be, because if I get stuck somehow I have to start over.

For my own PT practice, I’ve been walking around the cul-de-sac for about 30 minutes every day with Linda. I wear a gait belt for security, but she hasn’t had to catch me yet. We walk up and down the block a couple of times, for eight or nine minutes, and then I take a break.

My angels at SAI came through and got me an OT assessment at UVA outpatient yesterday—weeks earlier than expected. So I went there and did many of the same assessments that I did at SAI: moving the little blocks over the divider, fitting the small pegs in the holes, and testing grip strength. On each one, I had improved about 20% since my last assessment at SAI on Monday. Now that I’ve done the initial valuation, I have my first official outpatient OT appointment scheduled for next week.

This morning was something of a low point: Linda went to take a shower, and the whole shower head (a handheld one newly installed for me) came out of the wall. She was very upset, understandably, and I felt completely and utterly useless. After she had showered in another bathroom upstairs and come back down, we both had a good cry.

I did some OT exercises at home this morning, playing with putty. Then around 11:30 we got an email saying that there was an open appointment for an outpatient PT assessment at 1:30 today. So I took that appointment and Linda drove me to UVA. Again, I think I did really well: I was able to stand up and sit down 5 times in 11 seconds. “Normal” is considered number 12 seconds—so I can stand up and sit down like a normal person. I already have two PT appointments scheduled for next week.

I’m looking forward to all the family and friends who are lined up to come visit and help now that I’m home. You are all my angels.