(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) At the rehab hospital, Beth and I took turns reading aloud in the evenings from the new Harry Potter book, Goblet of Fire. She could hardly hold the book, even though it rested on a small table over the bed. At first, turning pages was impossible and we used clothespins to keep the pages open. We put a fat tube around a pencil so she could use the eraser end to turn a page. That worked until she eventually figured out how to accomplish the job with just her hands. She somehow sustained an easygoing attitude about almost everything. It suddenly became imperative that the bottom of her jeans covered her ankles when she sat in a wheelchair. Immediately after a transfer, I grabbed the extra fabric at her knees and pulled it down so the bottom hem touched her shoe. Then, at her request, I adjusted it again. Fourteen years old, she also added these steps to the ending routine in physical therapy. “Beth worked long hours in rehab,” Laraine said, “learning to move about in her wheelchair and moving from place to place from her chair. To do these tasks, innervated muscles need to be very strong and much of her day was spent weightlifting and exercising.” The physical therapists and aides became trusted friends. However, the hospital director was an expert on strokes, not spinal cord injury. “The director told me that I should never get in a pool,” Beth said, “because my body would go into autonomic dysreflexia—my blood pressure would shoot up, my temperature would rise, and I could have a stroke. Luckily, my physical therapists disagreed with the doctor, but I had to wait until I was an outpatient to try their heated therapy pool.” The hospital director also insisted that everyone with a spinal cord injury should need help for depression, so Beth agreed to meet with a psychiatrist. After two sessions, she asked if she had to keep talking to him. He told her she was in denial about her disability! ...which didn’t make any sense to me, since she talked openly about her injury and asked about details. It amazed me how easily she dismissed the psychiatrist’s judgment as a minor nuisance, with no need to argue or to change his mind. He seemed a little distressed because she didn’t experience set stages. Looking back, it's clear to me that everyone in my family struggled to accept her injury—all of us, that is, except for Beth. A newspaper reporter wrote: Pressed if she has ever asked, “Why me?” Kolbe said, “No, I never did. I never did the whole grieving process thing. I was too busy during rehab. I had great physical therapists.”
4 Comments
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth decided to cut her stay short at the rehab hospital to start her first year of high school on time. The inpatient stay for those with new spinal cord injuries in the neck often exceeded three months. She would leave her hospital room after two months, giving her two weeks at home to adjust before school started. She refused to weigh the merits of the easier option: tutoring. No matter that she was pale, tired, weak, and susceptible to infection. No matter that she could wheel herself a short distance before her arms trembled and exhaustion set in. "Life is about making choices," Beth said. “At this point, some people may have taken a year off of school to rest and build their strength at home. I wanted to start at Tiffin Columbian High School with the rest of my freshman class.” I was faced with a choice as well. I officially quit my job at the institution for what I thought would be a long-term role as my daughter's personal care assistant. One afternoon in early July, John stayed with Beth while I turned in my keys and set up the literacy program for whoever would replace me. At the center, I ducked into a little-used hallway and closed myself in my office, avoiding the dozens of residents I had worked with. Most had looked forward to our sessions, usually a pleasant reprieve from monotonous days. I justified walking away, since my other option, talking individually with many residents in different locations, would be disruptive and frustrating all around. And with staff quitting regularly for easier jobs, residents lived with a revolving door of workers who cared about them. However, there was no comfort in the fact that I would not be the last to leave. As I left behind a good job where I could make a small difference, I wiped away more tears. Beth's shortened hospital stay added a sense of urgency to the rest of the summer. Extensive preparations had to be finished quickly at home–and at school. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Occupational therapy at the hospital focused on Beth's hands. We learned about the tenodesis reflex which some quadriplegics used to grip items, though it required persistent practice to use it well. I tested the reflex. I set an elbow on a table with my forearm straight up and my hand falling forward. Keeping my fingers loose, I pulled my hand backwards at the wrist. As my hand tilted back, the tenodesis reflex automatically closed the space between my fingers and palm. Sitting in a wheelchair at a table, my youngest was determined to manipulate objects with her hands. To grip a pen with a fat handle, she held it between her index and middle fingers by tilting her right wrist forward and up, her hand entirely closed. At first, she couldn’t press the pen down enough for the ink to show. Beth also observed and listened. We heard about the 1995 accident that left actor Christopher Reeve immobile and dependent on a breathing tube. His spinal cord injury occurred one inch higher in the neck than Beth’s and required nursing care around the clock. I tried to be grateful for my daughter’s ability to breathe independently and move her arms, but I wanted so much more for her. We met others with spinal cord injuries at rehab. One had a brain injury in addition to a bruised cord. A middle-aged man with an injury like Beth’s had lived his life in a nursing home. A newly-injured young man with paraplegia (paralysis in two limbs, the legs) refused physical therapy and moved to a nursing home. He had full use of his hands and arms. When another boy was paralyzed during fusion surgery to correct his scoliosis, his mom told me that he would not get out of bed for weeks. Then, he would not go back to school. “I learned how some people given the same situations react in opposite ways. I have seen how people take so much for granted,” Beth said as a 14 year old. “Some people had a tendency to stop. They wouldn’t try to be independent. That’s always been a goal of mine—to be independent.” Beth’s outlook stayed hopeful, but in a vague, trusting way. She had no idea where our future adventures would take us. |
Cindy KolbeSign up for my Just Keep Swimming Newsletter by typing your email address in the box. Thanks!Categories
All
Archives
November 2022
|