A Paucity of Predictions

Wednesday, April 14

8:35 pm

Today was a full day. It started with OT at eight o’clock in the morning, when Lori directed me to put on my underwear and a pair of shorts. I was fairly successful—only needed a little help on the underwear—but my shorts had a zipper and button, so they were easy to pull on but she had to fasten the button and zip.

I transferred from my bed to my wheelchair and wheeled to the bathroom, where Lori put toothpaste on my toothbrush and told me to do it myself. I actually managed to brush the outside of my teeth fairly well on my own, and Lori was nice enough to help me with the inside. She then had me wash my face. That went okay—at least, my whole face got wet. She next told me to brush my hair, so the left side of my hair got brushed straight down and the right side of my hair got beat up a bit by a brush. Finally, I ate breakfast with the adaptive silverware again. Turns out, it’s really hard to eat bacon with a fork. But I managed the eggs and the potatoes pretty well.

Lori started talking about the adaptive equipment I’ll need when I go home. She spoke as if, by the time I go home, I will have gained no more fine motor skills and will need just as much help as I do today. It was a little depressing, and it left me down for much of the morning. But I don’t think she intended the advice to be personal in that way. Because spinal cord injuries are so unpredictable, my doctors and therapists are unwilling to make any predictions about recovery. So, at any given point, they seem to operate on an assumption that the patient won’t get any better. In my case, based on the trajectory of my healing and what I’ve done so far, I know there’s a very slight possibility that I won’t get any better. But I also know that if I keep working at it I’ll have a better chance of progressing.

The conversation with Lori did, however, make me a little more realistic about the recovery timeline and what I’ll need when I go home. I sure as hell better be better than I am now, since I’ve only spent 10 days here and still have 14 to go. But, even if I progress beautifully, I will still need some adaptive equipment and assistance two weeks from now. It’s just hard to mentally adjust to that reality when I am so focused on maximum recovery.

After OT, I had “arm and hand recovery,” which is similar to OT in that it focuses on my fine motor skills but does so through puzzles and games (like the child toy–like exercise I described yesterday). Today she put a computer board in front of me, very similar to yesterday’s game, except all the holes were circles, slightly smaller in diameter, forming 10 rows and 10 columns on the board. The accompanying cylindrical blocks were about four inches tall. Again similar to yesterday’s game, the computer would light up a blank hole and time me as I used one hand to pick up a cylinder and place it in the hole. This time, the cylinders were in a plastic bin over my left shoulder, so I had to reach over to grab one before putting it in the hole. And, of course, there had to be a sadistic element to this: it would light up five holes in a row on a single row, and the next five would be on the other side of the previous ones, so that the cylinders I’d just placed were in the way of the holes I was then aiming for. I did a round with each of my hands; not surprisingly, my left hand was faster than my right.

I also played with Georgie again—or, rather, Georgie played with me. (“I’m a real boy!”) Also, it turns out Georgie is actually called Diego. (No wonder Christine’s internet search for Georgie yielded no results the other day. Much more success with Diego—here’s a video of what it looks like.) My arms were again attached at the wrists and forearms to cables reminiscent of puppet strings. Today, instead of the river scene, I had a forest scene. There were archery targets moving left to right across the screen, some larger than others. The exercise required me to thrust my arms out in front of me, thumbs facing up, to load the crossbow and then to bring my elbows far back and tightly to my side to fire at the target moving across the screen.

Linda and I then received my entire medical and therapy team (at least eight people total) in my room for the weekly “family conference,” which our three daughters joined by phone. Each of the team members talked about the work they’re doing with me and how I’m progressing, and my family had a chance to ask questions. Most of the discussion was very clinical—neither heartening nor discouraging. In fairness, because this was the first such conference and I have more than two weeks left in my stay here, I think it was intended to be clinical in that way. My team probably won’t give my family or me a clearer picture of what the near future will look like until closer to my discharge date, which is projected to be April 30. As that date nears, they will have a better idea of what equipment will be needed and will be able to tell us what to order.

Later, during my afternoon PT, I went back to the wheelchair specialist and was fitted for a new chair, which I am much happier with. My PT Brian was surprised that I was able to use my arms and hands to wheel myself. Happily, the armrests are of equal height and both lower than before, which fits me well. I can still propel the chair with my legs if I want, but that’s annoyingly slow compared with my arms—except when going backwards, which is fun. I found out pretty quickly why people in wheelchairs wear gloves.

After that, I pedaled with the hand bike for a long time today. It was hard: my heart rate went up, and I was very tired at the end. Evidently the research indicates that for maximum effectiveness with the bike stimulation exercises you should get the heart rate up to a certain extent. So they intentionally fatigue me, and it’s hard work.

In my last hour of PT, while in the harness, I walked some distance, went up a ramp, across a platform, down a ramp, around a curving line, and went back to repeat. After I did that a few times, Brian changed the ramp to a few half-height stairs on one side, and I repeated the course a few times. My gait still feels so awkward and weird and difficult, and I’m still dragging that right toe out. They are trying to get me to remember to flex and kick out my right leg and to keep swinging my arms like someone naturally would (it’s easier to let them just hang there when I’m focusing on my legs), and it all takes enormous concentration. One day, I presume, this will all become second-nature once again. But right now it feels like that’s never going to happen.

Linda had come while I was in PT, and she was able to peek through the windows and watch me while I was doing the walking course. (Linda mentioned to Christine that she was amazed how hard PT was working him—nonstop walking, steps, and ramps for 30 minutes. She was very impressed by how hard he was working.) Linda stayed to feed me dinner and then we had a wonderful Zoom call with her side of the family. Visiting hours ended way too soon, as always, and she left me to my evening TV show and phone calls with my supporters.

This is my jam-packed schedule for tomorrow:

• 7:30–9: Occupational therapy

• 10–10:30: Physical therapy

• 11–12: “Extra practice” (on the bike with electrical stimulation, arms or legs)

• 12:30–1: Lunch

• 1–2: Physical therapy

• 2–2:30: Recreational therapy—bocce? Something new?

• 2:30–3: Arm and hand recovery

• 3–3:30: Education

• 5:30–6: Dinner

Don’t know when I’m going to fit in that nap….