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Mom's Boot Camp (July)
As the director and choreographer of our private sessions, or drill sergeant—if I’m honest—I put Matt through his paces, weekdays, weekends, and especially on his day of rest. We lacked a screenplay and cue cards stage left or right or a tried-and-true prescribed regiment, but in equal parts, I barked out orders, cheered, coddled, beseeched, and egged Matt on, and we steadily marched ahead. I had no doubts that whatever we did contributed to his growing achievements.
For several weeks now, Matt had been intermittently moving his right thumb and a few fingers. Suddenly and quite dramatically, like a switch was flicked on, he could open and close his right hand almost normally. It was unfathomable, mind-boggling even. The opposite of a typical recovery pattern, this spontaneous miracle started at his hand and, over time, headed north toward the shoulder. The timing and synchronization of combined movements were disjointed. Nonetheless, it was the most miraculous thing!
Sitting unaided on the piano bench, he could lightly depress a few keys with his right thumb and index finger. When he seemed annoyed that he couldn’t do more, I showed him a video of his weak first attempts with his other hand, which lifted his spirit. His hope was short-lived. Spasticity and stiffness sought to restrict his fingers and his ability to move them freely, and there was no easy fix. It was a letdown, for sure.
Matt could also sit freely on the edge of the bed and was learning to resist my endeavors to push him off balance in different directions, with varying amounts of force and sometimes without warning. He could rise from a chair with minimal assistance, and for the first time, and to my amazement, he stood with the bedrail as his only support. Neither leg wobbled or gave way, and his head was held high. With each new accomplishment, I stopped to contemplate the next move. It was critical to carefully assess if his mobility and balance, paired with my skill, were adequate to advance to the next stage—we were alone, without a safety net. Carefully, we progressed to taking a step forward and backward with his left leg. It was a big ask for the right leg to support his weight, so I offered counterpressure, and to advance his right leg required a nudge from me to clear the toes to take a full stride.
These few steps opened up new possibilities for our sessions and enabled us to transfer without risk to a combination arm and leg bike; ten minutes exercised all four extremities and offered cardiovascular benefits. Being able to vacate the wheelchair briefly and utilize gym equipment like a regular guy was a nice change of pace.
The piano wasn’t Matt’s only hobby or past interest. Matt had joined the competitive ballroom dance team in grad school and has been smitten ever since. He rose to the pre-champ level in standard waltz and foxtrots—handsome in his coattails. I thought this would be a good hook; indeed, it inspired both of us. With his newly acquired ability to stand at the bed rail, I challenged him to stand in a dance pose—erect posture, chest up, left hand clasping mine out to the side, the right arm bent, underpinned by mine (since he couldn’t hold it up himself) and his hand on my back. His standing balance was not rock solid without the bed rail, which challenged his core strength and stability. To complicate matters more, my balance was tenuous as well. I had to stand with a small base of support to block his right knee with mine and had both arms up in the air—with no support or the ability to reach out. A stiff wind or an incorrect weight shift might have toppled us, but it didn’t. He perked up whenever I mentioned dance pose, even if only for a few minutes. I imagined it resonated with fond memories of gliding elegantly across the floor, outstanding achievements, applause, and recognition. It caused me to pause and lament that this might be an unattainable dream.
Our reward after most sessions was a nice walk through the surrounding neighborhood. He took it easy while I got a workout, leaning hard into his wheelchair up inclines and backward on the down-slope to counterbalance the increasing momentum, speed, and worse, careening out of control. I would stop to draw his attention to the warm sun, houses, flowers, people, cars, colors, oddities, or changes from day to day. I offered variety to expand his horizon, from passively looking straight ahead without focus to seeing and interacting with the world around him. Earnestly, I sought to pierce the impasse blocking brain activity—to dispel the all-encompassing grip of his disability—to allow the outside to seep in and the inside out.