Baby Steps

Saturday, April 10

9:50 am

Yesterday I got my usual medications in the morning and chatted with my buddy Dr. Matt Evers, the psychologist. He’s very good at just being a friend, even when I know he’s observing me. After I chatted with Matt for a while, and the doctors who interrupted us, OT came in. Lori wheeled me downstairs to the CORE gym and sat me at a table. I put my left arm on top of a towel on the surface, and she instructed me to clean the table. I had to straighten the arm, slide it to the left, straighten it again, pull it back to the right across me, and repeat. I did that with each arm about 20 times.

Then she tortured me. Before me on the table there were six cones, each about three inches wide at the base and six, or maybe eight, inches tall. The exercise was to reach over, grab the cone, lift it up, and stack it on top of another cone. She also put electrical cuffs on my forearms and top of my hands that sent electrical currents through my hands. I was able to reach out to the cone but wasn’t able to get my fingers wide enough to go around the cone; as the electrical stimulation went through my hand, it opened it, so I had to time the grabbing of a cone with the stimulation. This was frustrating, because I’d get my hand to a cone and then it would contract. Ultimately I required some help from Lori to grab the cone. Stacking the cones was also difficult, because when I lifted my arm with a cone in hand, my arm would twist to the right, so the cone wasn’t straight enough to put on top of another cone. It involved more fine motor movements to achieve than one might expect. I.e., it was damn hard.

At the end of the session, Lori said she’s very pleased with what I was doing and that every time she’s given me an exercise she thinks will be hard, she decides she has to give me something harder.

I continue to enjoy connecting with the staff here, and many of them continue to go above and beyond to help me. I had some particularly interesting conversations today with one of the techs, Lily. I was reminded how much I may have in common with people I initially judge for superficial reasons. After feeding me and get me situated today, Lily stayed with me an extra half-hour to select and replace some of the family pictures hanging on clothespins on my door. I thought that was just exceptional.

During my afternoon PT yesterday, Brian fitted my legs with remote-activated electrical cuffs and put me in the harness in the CORE gym. I walked about 30 feet, turned around, walked back to the chair, turned, and sat down. I did that three times, with electrical stimulation the whole time. I improved every time: the first time, I was dragging or catching my toes on the ground on every step; by the third time, I caught my toes only two or three times. Brian was pleased by this clear improvement.

I went straight from PT to the education room, where four other patients (all also in wheelchairs and neck braces) and I were educated about taking care of our shoulders. Because the shoulders are held in place only by muscle, rather than bone, they are particularly susceptible to injury.

6:30 pm

I told my nurse Jacquelyn today that I had planned on biking the Natchez Trace with my daughters in 2022, and now we are hoping to do it in 2024. She immediately asked, “Why are you putting it off?” I explained that I was not going to be in shape for it next year, and Lauren and Christine won’t be able to do it the following year, so we had settled on 2024. If I can do it then. She responded, in all seriousness, “You’re going to be back 100%.” It was really nice to hear someone say not only that 100% is possible but that she thinks I’ll get there. The doctors are reluctant to say anything like that, because for spinal cord injury patients, there is always a chance that the recovery could plateau suddenly and unexpectedly at any point. But based on my progress so far, chances are that Jacquelyn is closer to right than the doctors who warn me of worst-case scenarios.

Because today is Saturday, there was nothing on my schedule as of this morning. I spent the morning in bed catching up on emails and calls, and I performed my own OT by doing exercises on every muscle I could think of from my shoulders down to my hands. The baclofen is still making me sleepy, so I fell asleep. The PT tech Kiara came up at 11 o’clock for an impromptu PT session, but she was utterly unable to wake me up: she shook me, clapped her hands, and called my name, but I did not budge. After making sure I was still breathing, she left.

I was eventually woken up by my nurse, who helped me move to my wheelchair and settled me before a table by the window with my phone in front of me. I was listening to an audiobook when Linda called me, and I had to raise my hand and use my thumb to pause the audiobook—a real-life OT exercise. Linda was calling with the exciting news that our fourth grandchild had been born—and, even more exciting, it was our first granddaughter! Lauren had given birth to a healthy baby girl.

Kiara came back in around two o’clock and told me we were going to do PT, which was a very nice surprise. She took me downstairs to the stim bike and hooked up my legs to the electrodes. Stim bike sessions usually only last 20 minutes, but Kiara had extra time in her schedule and was kind enough to sit with me while the bike went rolling along for 50 minutes. Kiara was a delight to talk with while I was pedaling; she’s a wonderful young lady who reminds me of my daughters. When we were done with the bike, I wheeled back to the elevator with her. I told her about the blog, and she said I should write a blog on parenting. While I was flattered, I’m not going to pretend that I can tell others how to parent. I’m very fortunate to have such wonderful children, and—most important—I married the right person.