Father’s Day gave me time to reflect on the important role my family had played in my life. Dad had been ubiquitous in our lives as we boys grew up, and he was still a loving, supportive presence after we were adults. But after I had my stroke, it was as though he had to take care of me through a second phase of childhood. He had to help me with bathing, dressing, cooking, walking. It had to be a tiresome task, because it was exhausting for me.
Walking was exhausting. Standing to fasten my belt drained me as I struggled to maintain balance. Standing up in the tub seemed fraught with peril, as I constantly imagined all the ways I could fall and hit my head. Dad would stand at the sink and hand me my toothbrush because my wheelchair couldn’t fit through the bathroom door and I couldn’t stand at the sink. Then he would hand a variety of cups to me so I could rinse, spit, and use mouthwash. I’m overwhelmed when I think of all he did to care for me, and he is part of my inspiration. I want him to see me walk without a cane again.
We had a family get together in Mississippi scheduled for September. My plan was to be walking without the cane by the end of the year; I still had almost three months to strengthen my leg. Each time I had gotten together with my dad and brothers over the last three years, I had improved physically during my time away. I was now at the point where I could really build a lot of strength and endurance before I saw them again. So I continued to throw myself into my workout, excited to impress everyone.
I had been working left arm aggressively. Although I couldn’t straighten it fully, my triceps were getting a lot stronger. During the first year after the stroke, physical therapists had pushed me to try supporting my body weight with my arm. Each time I tried, my elbow would just skid along the table. Frustrated, I tried holding it in place with my right arm. The arm wouldn’t move, but it felt like I was cheating. Once I started going to the gym, I did exercises that built up the triceps. Then in 2019, I suddenly noticed that I could generate enough force in the arm to easily hold my body up.
My left leg was coming along even better. All the squats, presses, and lunges had not only improved my balance, but my reflexes seemed improved. Most of my falls had come while trying to spin around too quickly. Now I could turn almost as quickly as before I had the stroke. When I would go from sitting to standing, I would often lose balance. Now my hamstrings were so strong that I had no difficulty standing up from the lowest of seats. My leg was just more solid in every way I could think of.
Getting up and going to the gym had ceased to be a struggle. After two weeks of lunges and leg press, things that had once tired me out stopped seeming like big obstacles. One such thing was the hill in the backyard. For the first eleven months I had lived in my building, the hill had seemed foreboding. It had once been my goal just to get to the top of it by climbing up the steps.
Indoor steps alone had once been physically demanding. I would cling to the railing and lean on it, hoping not to fall backwards. The prospect of falling back and hitting my head was so frightening that I would lean forward. If I did lose my balance, I would fall on my stomach. This way, I could simply rise to my feet and keep climbing. Although this method felt safer, I would see pictures of myself afterwards and hate the way I was so stooped over. I looked like an elderly person with a severe hump in his back.
Then I managed to climb up the hill. Sure, someone had helped me, but I had climbed it the difficult way: across grass and uneven ground. Climbing up the steps would be easier, plus I would have the help of a sturdy hand rail. I didn’t even have to worry about the descent, even though there would be no handrail on my right side. I had turned and backed down before. This would be nothing new for my brain and body to figure out and coordinate.
I decided to attempt it one Saturday evening while I was out in the backyard with Mary and my friend Maggie. When I suggested I try it, Maggie offered to hold Mary for me. I told Maggie that I wanted to try holding her myself. Mary is my responsibility. One day I am going to have to learn how to walk up and down steps safely while holding onto her leash. Maggie handed the leash to me and I gripped it tightly in my left hand. I grabbed onto the handrail with my right hand. Then Mary and I began our ascent.
My pace was cautious but steady. Mary was always a few steps ahead of me. I’d worried that she might get excited and try to pull ahead, but she didn’t. It was as if she realized that she could scout ahead but didn’t want to risk injuring me by upsetting my balance. In the past I had used the rail to help pull myself up, but after working so hard on lunges, my left leg could carry my weight without assistance. I straightened my back because I no longer needed to lean on the handrail. I virtually glided to the top without breaking a sweat. Stairs were now off the shrinking list of things I couldn’t do without great effort.
What I was really excited about was that I was about undergo another round of Botox injections. I received Botox injections in my left arm and left leg every three months. They act as muscle relaxant. They normally inject me in my biceps and calf to make it easier to walk by reducing the involuntary pointing of my toes and to help me to straighten my arm by allowing my triceps to overpower the involuntary constriction of my arm. These didn’t make me able to instantly walk normally or straighten my arm, but I was able to move with more fluidity over time.
When I first started working out again after two years of therapy and Botox, the amount of spasticity in my muscles severely limited how much weight I could lift. I concentrated on the low-intensity sessions. My range of motion was extremely limited, and most of the time was spent on set up or walking between workout stations. My energy was low in those days; I felt lucky if I could make two trips to the gym in a week. But over time, I was able to start doing a greater variety of exercises.
With increased strength and range of motion, I was able to access more muscle groups. Many of these supporting muscles still suffered from spasticity. So I asked my doctor to start injecting Botox in more sites. First we tried the scapular area. We saw results almost immediately. My shoulder loosened so much that I was able to get my arm around the bar to start doing squats the next week. After another year, I asked my doctor to inject me at my wrist. This didn’t grant me the freedom of movement I had anticipated, probably because every time I straightened my wrist, my fingers would contract. So to counteract this the next time I went in for Botox, the doctor also injected my hand.
The hand has many more nerves in it than the shoulder or leg, so I anticipated the injections to be much more painful. The doctor offered to use pain-numbing spray, to which I agreed all too quickly. I asked her to inject my shoulder and arm first, without using the spray. If I could endure the pain easily without using spray, the difference wouldn’t feel so jarring.
The injection in my scapula was almost like a pin prick. Next she moved down to my biceps and wrist. The pain here was a little more noticeable, but it was still only mild pain. Now it was time to do my fingers. The nurse couldn’t hold my hand open, so I did it for her as the doctor sprayed my hand where two off my fingers separated. This time it was painful. She injected me twice more; it hurt every single time. I can only imagine how much it would have hurt without the anesthetic.
It usually takes the Botox one or two weeks to fully penetrate the muscles. In the past, I would stay away from exercising for that time period because it was communicated to me that exercising could disrupt the muscle penetration of the Botox. But my physical therapist in Fall of 2018 told me that she felt exercising immediately would aid the Botox in penetrating the muscle. When we tried that, it seemed to work instantaneously. After that, I stopped taking breaks after Botox injections.
My ILS worker came over the day after my injections. We used the session to take me to the gym for a quick leg workout. I started out by doing some of my old exercises – leg curls and leg press. With leg curls, I noticed that I had much better endurance. I was able to lift my leg a little higher, but my strength quickly declined. But I could easily do 12 to 15 reps every set, and after I stood up from the leg curl machine, I noticed that my leg bent a little more as I walked.
Now I climbed into the leg press machine. My left leg easily found its position against the sled. As I pushed up, I could tell that my leg would endure a full set of15 reps. After I finished my first set, it felt like I was only warming up. So I added ten pounds and did two more sets of 15. I felt so pumped that I asked my ILS worker to add ten pounds to the other side. I finally slowed down to 12 reps, then fell back and rested.
Finally I needed to add some cardio. Normally I like to end workouts with time walking on the treadmill. But since I had recently begun using incumbent stationary bikes, I decided to try the upright one. Although I had expected this one to be a lot more difficult, I found it simple to slip my left foot onto the pedal. I tried a couple of revolutions, and they were so easy that I had to bring the resistance from level 0 to level 4. I pedaled comfortably for about a minute. My leg didn’t flare; my foot didn’t slip off the pedal. Now I wanted to grip the handlebars.
My left arm couldn’t reach the handlebar on its own, so I brought it over with my right hand. My hand gripped the handle bar and I rotated my elbow inward. Now I was riding with form as natural as any other patron. I rode for a full ten minutes, enjoying the feeling of my foot going around and around. I could have continued, but I knew we had a schedule to maintain.
As I climbed off the bike, I felt that a whole new world might be opening up. Even if I never drove again, with a lot of time and practice, this might be a way for me to start traveling short distances independently again.