My routine was becoming monotonous. I would wake up every morning; have something to eat (I was only allowed to have liquids and foods that did not require a lot of chewing); go to therapy, where I would watch e-stim move my arm and leg and get very excited; come home at night, trying to move the same muscles without the e-stim machines; go to sleep heartbroken and bored.
After about a month of being conscious, one day I was performing an exercise that had become routine: Andrew, my physical therapist would have me lie down on my back. Next, he would place a bolster – a soft pad about a foot or so high – beneath my left leg. My foot would fall limply. He would then attach electrodes to my quadriceps. When he switched on the e-stim unit, my leg would shoot upward. My job was to try to straighten my leg as the machine performed the same task, and hold it for a few seconds after the e-stim switched off. The motion would be repeated for several intervals over a ten-minute session. The idea was that my mind would eventually be able to control the leg muscles by itself.
For weeks, I had tried to hold my led up after the e-stim switched off, only to have my leg drop weakly as soon as the machine stopped assisting. But finally one afternoon, I was able to keep my leg elevated after the assistance had stopped. Then I was able to keep it up again. After I was able to maintain leg elevation several times, I tried lifting my leg without stimulation. I was able to move it upward ever so slightly, but I knew what that meant: Even if I only had a slight amount of strength in it, I would eventually be able to walk again. I could not wait to tell people.
I don’t remember which of my brothers I called first, but I yelled the same message, “I … MOVED … MY … LEFT … LEG!” The conversations I had with each were rather short. They each expressed pride in the accomplishment. But it wasn’t what I’d hoped for. When you are the one who has been lying in hospital beds for four weeks, dreaming of the day when you might be able to use your leg again, very few people can adequately mirror the joy you experience when you are finally able to move it on your own for the first time.
I was delighted that I could move my leg again. Although I was still in a wheelchair, I would practice using the leg as often as possible. Whenever it was time to transfer between the wheelchair and a mat or bed, I would try to use the opportunity to stand on my left leg as long as possible. When I was in bed at night, I would kick my leg as high as I could several times. I reasoned that, as weak as my leg was, even tiny amounts of movement would be the same as strenuous exercise. It would increase my strength by the same percentage as weightlifting would a strong leg.
Betsy assured me that my arm would soon come around. She explained that the leg is the first thing to start working. Then the arm follows. With either joint, the pattern you recover movement in is proximal to distal. In other words, your shoulder and thigh are the first parts to begin functioning at your command; the fingers and toes are last. (I have since learned that it takes more brain cells to operate an arm than it does a leg, and the same is true for fine versus gross movements. So the brain normally begins by controlling the muscles that are easiest to control.) I saw still impatient for when my arm would start responding to my command. Knowing the scientific reason behind why things would take a bit longer to function was only a small consolation. A concrete timetable would have made it easier to sleep at night.
Then one Friday night, while I was watching television with a friend, she noticed my left thumb had begun moving.
“You’re moving your thumb!”
“I am!” I couldn’t believe it was happening. All those weeks trying to move my fingers to no avail. Now my thumb was moving without my deliberate action.
“Try to do it again.”
For the next hour, I just tried wiggling it. Sometimes it wouldn’t respond. Other times it would. Before long, my forefinger was also moving. I tried opening my entire hand, But the rest of the fingers were not ready to cooperate. So, by the time I was ready to fall asleep, I could basically perform an acute angle pincer motion very slowly.
I proudly showed this to Betsy. She was happy for me, and she began doing other things for my arm. One technique was fastening a long, foam-rubber pad to my left arm rest. Then she would place my forearm in a splint. Then it would be strapped down to the pad for one or two hours at a time. In this way, my hand would be stretched and my arm would be held away from my body. Otherwise, my
handwas clenched in a permanent fist and my elbow was drawn close to my body.
My arm was also involuntarily bent at a permanent 90 degree angle. Betsy explained that this was called “tone.” It is caused by the biceps constantly firing. As a result, the triceps cannot overpower it and extend the arm. Thus, she would have to stretch my arm every day. Some days, she would do it by stretching it manually. Other times she would do it by attaching the e-stim electrodes to my triceps.
Then one day Betsy told me that she was going to have me go upstairs with another occupational therapist named Josh. The next day, he would put me on a device known as the e-stim bike. She told me that I was a good candidate for this apparatus because I liked to work hard. At this point, I had heard this line so many times that it was becoming a cliché. Nonetheless, I was in the right mental state that it was just the motivation I needed. I suspect that Betsy knew that my mind was as malleable as a child’s. Flattery was the best encouragement.
The following day, Josh took me to a gym on a different floor. He explained that this was the brain injury ward. The stroke ward didn’t have its own e-stim bike. The machine didn’t look anything like I had expected. I had imagined something akin to a recumbent bike. This device didn’t resemble a bike at all. It was more of an upright terminal that had pedals, hand pedals, and a monitor.
Josh strapped my chair to the bike, then he placed my left hand on the hand pedal. He ask me to hold the other with my right hand, and try to pedal. My left hand slipped off. So we tried it again. It fell off a second time. After that, Josh decided to strap it to the pedal. After that was done, he attached electrodes in pairs along my forearm, my biceps, my triceps, my shoulder, my rhomboid, and deltoid.
When the electrodes were in place, he turned on the monitor and began manipulating the bars on the screen. Each bar was a setting that corresponded to a muscle group.
“Tell me when you can feel each one. Then let me know when it starts to hurt.”
A jolt shot through my forearm. “I can feel it now.”
“Let me know when it gets to be too much.” He pressed the up arrow until I told him to stop.
We repeated this process with each muscle group in question, until each setting was entered into the computer. Then he saved my profile into the computer. After that, he unstrapped me. We weren’t going to actually exercise today. It took half an hour just to set me up.
The following day, we got on the bike. An image of a bicycle rider appeared on the screen. I felt the e-stim began to fire. Then the machine started pedaling in reverse. Again with e-stim, my instruction was to assist the device in moving my muscles. I felt my shoulder, arm, and back begin to jump. My grip began to tighten around the pedal.
At the bottom of the screen, I saw percentages show up on either side. Josh told me that I needed to pedal with each hand evenly. My goal should be to keep the indicator on each side at 50$%. Then the percentages – which always totaled 100% – would even out. That is how I would know that my left arm was working. This was difficult, and I could only keep the left side firing at 20 – 35%. Nonetheless, my arm was working as hard as it had in two months. My shoulder hurt every time it extended. But I fought through the pain. I was happy to be using my left arm.
After twenty minutes, the machine slowed and cycled through a cool down. My shoulder hurt less, and after about five more minutes, Josh unstrapped me from the machine. My shoulder stopped hurting immediately, because while it was no longer being stretched, the endorphins were still present. My hand and forearm tingled. My entire arm felt alive. I felt accomplished. Josh wheeled me back down to my room. I passed out from exhaustion, though it was only 2:30.
I was satisfied that my arm and leg were going to get stronger. The only thing that was still bothering me was incontinence. From the time I had awakened, I could not control my urination. At Select, I had frequently just urinated while lying in bed. However, my physical therapist there had given me a urinal. He didn’t really know how to use it, so it was trial and error for me. It didn’t make sense at first, because I couldn’t understand how it could be angled and not have one in end pointing against the gravitational flow of liquid and urinate. Invariably, the urine would wash out and spill on me. However, I soon reasoned that, if I rolled over on my side, I could pee downward into the urinal. Also, with it flat against the sheets, urine would not flow back through the neck and out onto the bed.
So I now had my method of urinal use down. The next issue was actual controlling my urine stream. Because of the problem with incontinence, even though I knew how to use the urinal, it was a major challenge to get into position in time. So I would feel the signal and start rolling over. With my weakened abdominal muscles, it would generally take about four tries before I could twist onto and stay on my side. During this time, my need to urinate would quickly accelerate to emergency. I would grab the urinal and try to stuff it over my penis. As I did this, it was always with a sense of panic and discomfort. Half of the time, I would hear the urine patter on the inside of the plastic receptacle, and a I would relax, exhaling with delight. The other half of the time, I would misfire or I could not get the urinal in place at all. I would feel bitterly disappointed as I felt the sheets slowly fill with warm liquid.
By the time I arrived at Methodist, I confident that I had the proper technique once I could insert my penis into the urinal, but I still couldn’t control my urine stream. Often I would try to piss, and nothing would come out, no matter how long I lay there, try to force myself. Then, less than hour later, I would have little warning before my shorts would end up covered in urine. It was so uncontrollable that I finally began having people wheel me to my room between therapy sessions. I didn’t trust myself to use regular restrooms yet, and I never wanted to be far from my urinal for long periods. The muscles it took to regulate voiding were the last ones I would have to start developing the ability to control.