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Mom's Boot Camp (May)
I endeavored to make our workouts, my version of an army boot camp, as all-encompassing as possible. It was more than foundational components of movement, exercises, and physical undertakings. Along with the whole family, I involved Matt in social and recreational activities, such as games, writing, speaking, and more.
Early on, I was struck by how intently he tackled using a marker and pencil—like a prisoner recently released after six weeks of solitary confinement might relish the opportunity to express himself—and by how he soon advanced to printing letters and inserting an occasional word such as this, he, and the, arbitrarily. It was fun to watch this transformation.
His ability to follow commands evolved, beginning with simple one-step instructions. Each request took time for him to process and enact. On one occasion, Matt reached across his body to touch my outstretched hand, touched his right elbow, tracked to the right with his eyes, and turned his head to the right. The last feat was monumental because, for so long time, his head had been cocked to the left and down, ignoring the right side and never looking at us when we entered his room from that side. Branching out, I tried unsuccessfully to get him to open his mouth, stick out his tongue, or smile. Frequently, we convened sessions outside on the patio and took advantage of the beautiful summer weather as we worked. We advanced to a sequence of movements, such as touching his nose, mouth, and chin. When I asked him to do the same to me, Matt touched my face repeatedly, and this gentle caress, a tender expression of love, brought tears to my eyes. It was easy to get caught up in the moment and believe that he was ready to come out of hibernation when he wasn’t, and as he went back into hiding, I sighed.
Rolling over in bed entailed a sequence of movements from bending his legs before rotating the hips over, followed by or in tandem with turning his head and reaching with the opposite arm. Since he couldn’t move his right arm, rolling to Matt’s left side was more difficult, so I guided the right arm across his body when we practiced in that direction. Once securely in side-lying, I scooped his legs off the bed edge and helped him push up onto the bottom elbow before we gave a final heave-ho to sit upright. If we failed to generate enough momentum to pass the midpoint, he would tumble down and have to start over. Once up, he practiced sitting at the edge of the bed, but without any support to prop him up, it was precarious; he easily toppled over on the soft mattress if he leaned slightly in any direction.
I began to help him stand up from the bed and pivot to his wheelchair (WC) with maximal assistance, and I mean maximal. His legs were like rubber, and he struggled to support his body weight because he had lost so much muscle mass. We practiced on the sly. We hid in a corner of the room, away from the room camera, which allowed staff to keep an eye on him—attempting to avoid staff telling me I shouldn’t be doing this. Although therapists had given Mike and me clearance, not all nursing staff knew this, and after the first few aides came running in asking me, “What do you think you’re doing?” it was simpler to stay clear of the camera angle.
Periodically, I dangled a carrot in front of Matt—an activity that might interest him —hoping to entice him to take the bait. Matt had played the piano since he was five, acquiring proficiency and confidence by playing at recitals, concerts, and community events. We tapped piano fingers on a table and replicated the playing motion, but it soon lost its appeal. Off we went in search of the real McCoy, the piano in the hospital dining room. Removing the legrests and armrests, I maneuvered his wheelchair close to the keyboard, yet Matt was downcast and reticent to try it. Patiently, I waited, giving him space, until he delicately compressed the keys. It was easy to see that this unusual setup took away from the ambiance and pretense of being a grand pianist, so as soon as I could, several weeks later, I transferred him onto the piano bench and held on tight. To my great surprise, he played chord sequences and scales and experimented with different note arrangements, concluding with arpeggios. Matt perked up with this success, and this became a weekly event. Each session, I’d place his right hand on the keyboard as a reminder, a placeholder, although he couldn’t move it yet. It apparently frustrated him enough that, on one occasion, he forcefully pushed it off.
