 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth believed that everything would be okay. I had no injury and felt sure that nothing would ever be okay again. I blindly followed her lead and pretended there was hope when I saw none. I watched as experts measured Beth for her own chair. Quadriplegics primarily used heavy power wheelchairs, and then for back up, a smaller, lighter push version. Big motorized chairs required a van with a lift, while manual chairs fit in most cars. Beth had one question: “Will I get stronger faster using only a manual chair?” Our favorite physical therapist, Laraine, paused and smiled before answering with a simple yes, clinching the verdict. No motorized chair. We replaced the car in the accident with a hatchback station wagon instead of an accessible van. I let Beth make all the decisions about her care since between the two of us, she was the emotionally stable one. I also thought that she should feel in charge of her life, especially with most of her body out of her control. I did raise questions, though, when she ordered a manual chair when she could barely push one. I wasted my breath. Beth weighed every decision on the metric of possibility, on whether or not it might advance her goal to be less dependent. My goal was to get through the days without crying in front of anyone. “You don't really have time to cope with things,” Beth said. “You just kind of get thrown back into the world.”
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 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Mid-summer at the rehab hospital, Beth gradually felt small sensations in her trunk and legs. The therapists called it a “return” that sometimes occurred after the shock of the initial trauma abated. She could feel a firm touch on the skin, but not hot or cold or any degree of temperature. Beth’s spinal cord had been cut at C6-7, but the new sensations proved that a tiny strand remained connected, defining her injury as incomplete. When we sat outside between therapy sessions, she could not feel the warmth of the sun on her legs. “I have regained only partial feeling in my trunk and legs, but still no movement,” Beth said. “I can move one finger on my left hand and my handgrip is still weak.” Zero finger control in intensive care changed to one digit, the left index, which could move a little. Limited to a range of three inches, the finger could not straighten or touch her palm. Even so, it was a gift, one that would make her left hand the favored one for everything except her right-handed habit of writing. I hoped for more returns which never happened. Simple tasks remained complicated or unworkable. The inability to put her hair up in a ponytail bothered Beth. She couldn’t manipulate an elastic band, but there was a second big obstacle. If she raised her hands high as she sat in a chair, she tipped forward to the floor. Beth depended on the wheelchair armrests to balance. Laraine taught her how to push down with her palms on the locked big wheels to shift and move her bottom, little by little, to the front edge of the chair seat. Then, Beth leaned against the backrest for stability to prevent a tumble to the floor when she lifted her hands behind her head. Before she handed me the elastic band, she tried to put her hair up on her own, again and again, until her arms trembled. “Early on,” Beth said, “I decided that I was going to become completely independent no matter how long it took.”  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
I was not a stranger to disability before my youngest daughter’s injury. I had managed group homes and worked at a state institution. I thought I understood challenges. I was wrong. Through my jobs, the clients I had worked with seemed to have quantifiable disabilities, ones with a range of realistic goals. At the rehab hospital, I could not see an array of potentials for quadriplegics. Love and support could not alter brutal physical realities. My guilt over causing the accident grew into a horribly unspeakable thing. Beth never forgave me because she never blamed me, though there were times when I wish she had. I didn’t deserve a free pass for such a devastating injury. Years would slip by before I could forgive myself. In physical therapy, she learned the steps to sit up by lying on her back, throwing one arm over the other to roll on one side, then pushing down on the mat with both hands to lift her body up. However, knowing the process and having the strength to do it were two different things. The first weeks in rehab, continuous exertion with no progress exposed the extent of her hope. Eventually, from a position on her stomach, she could lift her trunk a few inches off the mat with her arms. Even Beth seemed surprised by, and glad for, every little thing. “I had to relearn how to do everything,” she said. About six weeks after the accident, a small group of us watched Beth attempt to sit up by herself for the first time. Starting on her back, she concentrated on rolling over to one side, making it after several tries. Next, she slowly—slowly—rose to a shaky sitting position. After picking up a shoe, she swayed through several clumsy minutes of strenuous effort to put on each shoe with uncooperative hands. I applauded with John, Maria, Beth’s grandparents, and the therapists. John’s dad had to walk away so she wouldn’t see her strong grandpa cry, the long struggle eclipsing the small success. Since Beth felt comfortable with the night nurses and aides, I left the hospital at bedtime to drive home, happy to see Maria and Ben. I slept the best I could and returned to rehab early each morning. I depended on regular visits from John and my parents during the days. Together we stayed on the sidelines and cheered for Beth, roles we would repeat often in other environments. |
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