![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) During a brief respite from antibiotics, Beth set in motion a far-reaching odyssey, one that would lead to unexpected adventures in and out of the water. I watched as two therapists held her up in the rehab pool, one on each side and both on the lookout for autonomic dysreflexia, which thankfully did not occur. After a few exercises, Beth asked to float, a complicated endeavor with no command of the lower body. Fully supported on her back, she asked them to let go. They resisted at first, but eventually agreed, with a swift rescue a moment later. “I immediately loved the water and the freedom I had in it.” She talked them into more floating attempts while the therapists tactfully suggested moving on to more exercises. When she was a toddler, Beth had perfected the art of pleasantly talking her way in or out of most anything with a dimpled smile. John called her our little lawyer. The second time at the pool, the therapists bent to Beth’s persuasion again, positioning her body horizontally and letting go, over and over. They also taught her how to roll over from a face-down position, but she couldn’t do that or anything else in the water. At the third session, one therapist assisted in the pool instead of two. Experimenting, Beth discovered that moving her arms underwater allowed her to float on her own for a few seconds, with a bonus: backwards movement. “No one expected me to ever move in the water without someone holding me up.”
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![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) School days blurred by. A few times I left my job early to take Beth home with a high fever. Loraine had introduced us to Dr. Julie Miller, a wonderful physical medicine and rehabilitation doctor. At our first appointment at her Toledo office, she handed Beth a gift: a prescription for physical therapy in the warm water rehab pool. We agreed to wait to schedule the sessions until another respiratory infection was resolved with another round of antibiotics. My new normal felt strange. Most school days, Beth and I shared our lunch breaks in her locker room. I transferred her out of the wheelchair and she melted into the cot—the one she thought she wouldn’t need. Both of us were stretched too thin. We shared peanut butter sandwiches and apples during the break. Then, after more classes, I met her at the car. On Tuesdays and Thursdays, she fell asleep at home by 2:30 pm. The other three weekdays we headed to outpatient rehab directly from school. Green Springs was named for one of the world’s largest natural sulphur springs that bubbled into a smelly greenish pond next to the rehab hospital. Once thought to possess healing powers, the warm water of the spring had a distinct smell, a little like spoiled eggs. Many had traveled there in times past to be cured. While Beth exercised in physical therapy, I often walked around the pond. I thought about the other moms who had taken this path before me, hoping for miracles. We left therapy for home after 5 pm. Essays, lab reports, and other assignments filled the time after a quick dinner. Initially, I typed while Beth dictated. After a few weeks, she insisted on typing herself, aiming for specific keys with her thumbs and the one finger she could move a little by itself, the left index. I bought forearm supports that attached to the computer table for her to use. She asked me to remove them. I interrupted homework for the time-consuming shower routine with the annoying metal chair and rails. I asked her again if we should consider a different house with better access. She insisted that we stay in the only home she had ever known. Beth was given extra time to complete schoolwork, but she refused to consider it. Each day had enough of a work load without adding more. Some nights I lay down after 10 pm with her working on homework in bed. She couldn’t turn off the lamp on her nightstand until I replaced the switch with a larger one. Beth fell asleep easily. I didn’t. I couldn’t stop worrying about tragedies that could happen anywhere, anytime, to anyone I loved. ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth’s days in the rehab hospital focused on long physical therapy sessions. It didn’t seem fair that it took so very long for her damaged muscles to respond in some slight way. At Beth’s follow-up with the surgeon, we viewed her latest x-ray, a side view of the neck that showed 6 screws instead of 12 holding the large titanium plate; the other set of 6 lined up perfectly behind. In spite of the doctor’s impressive surgical skills, Beth’s motor function remained absent below her level of injury, complete. The muscles in her hands and legs began to shrink, unattached to her spinal cord. No leg movement, besides spasms. No bearing weight on her legs. No standing. No walking. No request for mechanical braces or experimental treatments. No envy of those with expensive equipment, such as standers, or those who spent hours strapped to bicycles and other machines. And no waiting for a miracle. Beth was eager to start her freshman year of high school on time with her friends. On discharge day in early August, she hugged the nurses and aides goodbye, but not her therapist friends. She would continue to work with them three times a week in outpatient therapy. Beth could sit in her new blue wheelchair without feeling dizzy and pushed the big wheel rims to slowly move forward. With taxing exertion, she rolled her body on a flat bed to get more comfortable or to attempt getting dressed. Weak and wobbly, she sat up by herself and put her shoes on and off, though she couldn’t tie the laces. With effort, Beth could shift her bottom on the wheelchair cushion to prevent pressure sores. She ate and drank mostly on her own and kept trying to use her hands. She moved from the wheelchair to the bed more easily—with total help and a wood sliding board, newly made by my dad. “I was in another world at St. Francis," Beth said."Wheelchairs were the most common sights, everyone was completely accepting, and nothing about my injury seemed out of the ordinary. High school was different.” When we left the hospital room behind on a sunny August day, it felt like a fresh start. I returned Beth’s smile, hiding my apprehension over what the future might bring. The titanium plates had fused to fragments of bone, so she no longer needed the neck brace. She tilted her head a little towards the open car window, happy, as we turned up the radio and drove away on the country road towards home. A co-dependent team, we plunged into uncharted waters together. ![]() (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.” ![]() (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.” ![]() (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. ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) When we arrived in Green Springs, Beth had a sunny hospital room to herself. We met the physical therapist who was an expert on spinal cord injury. With a big heart and bigger personality, Laraine would not disappoint. Laraine emphasized the strenuous work required over months and years for a C6-7 quadriplegic to be less dependent. Beth had zero strength—even in her arms and trunk where some of the muscles and nerves still connected to her spinal cord. I couldn’t imagine my youngest doing anything on her own, but she believed. The first time in physical therapy, Beth lay face down on her stomach, unable to lift her shoulders. At all. Sitting with her legs straight out in front, she could not keep her balance. Laraine supported her every step of the way, along with Jill or Amy. There was little progress in the first weeks. “At the rehab hospital,” Beth said, “the simplest tasks of putting my shoes on or sitting up by myself were the hardest challenges of the day. Transferring from place to place was impossible for me to do on my own. Wheeling myself any distance was difficult. My life consisted of two long physical therapy sessions a day where my therapists had no concept of being tired. They pushed me to exhaustion, but I knew how much they were helping and I appreciated it.” Beth looked forward to mail deliveries, surprised at all of the well wishes. We were overwhelmed by the generosity of our hometown of Tiffin, Ohio. My co-workers at the Tiffin Developmental Center donated weeks of sick leave time to me. The maintenance workers at the Center also built a long wheelchair ramp that connected our back door to the detached garage. John, Maria, and Ben brought more get-well notes and gift cards for gasoline and restaurants from friends and family. And news of an unusual gift. In elementary school, Beth had told her principal about the African Gray parrot she wanted to own someday. The principal collected donations from staff and students in the Tiffin City Schools to buy a young parrot and a large cage. Flowers arrived from the coaches of high school volleyball, the team she would have played on, and also from her club volleyball team, whose season ended weeks before. In the evenings, Beth and I took turns reading aloud from the brand-new Harry Potter book, Goblet of Fire, another gift from my co-workers. She could barely 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 to use the eraser end to turn a page. That worked until weeks later when she patiently figured out how to use her hands to accomplish the job. “Rehab was a great experience,” Beth said. “I was too busy to think about what had happened to me or to become depressed. Every new thing that I accomplished became a celebration. I was in another world. My family was always there. My best friends visited me often and even moved a birthday party to the rehab center so I could be there. The therapists became a second family to me.” Five baby African Gray parrots visited Beth in Green Springs. Propped up on the hospital bed, she cradled the noisy babies on her lap and picked the one that would be hers when she moved back home. The kindness of family, friends, and strangers would be repeated by many in other times and places. |
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