 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s physical therapist, Laraine, showed her how to shift her body to trigger a leg spasm that bent her knees, an invaluable skill for changing clothes in bed. Lying on her back with knees bent, Beth hugged her thighs up and over her body. Feet in the air, she put a pant leg over one foot to begin, the opposite of what most do (putting a foot into a pant). After the pants bunched at her knees, she pushed down on her thighs to straighten her legs. Then, rolling from side to side with effort, she pulled up the fabric a little at a time by hooking her left index finger (the one finger she could partly command) in a belt loop. The first year after her injury, Beth let me take over for the final stretch, though she always tried (and failed) to budge the zipper and hook the button. She refused to consider clothing with alterations, with the exception of flip-flops, her preferred footwear. I added a piece of thin elastic around the back heel and sewed it to each of the side straps so they would stay on. Getting in and out of cars sometimes scraped and smudged her unprotected feet, a consequence she judged to be acceptable. When her legs swelled, Beth used her new skill to deliberately trigger a leg spasm to stretch the muscles, move the blood, and reduce the risk of blood clots. She stayed active, and threw away the white compression stockings. Therapy continued three times a week after school. We met a woman with the same level of injury who proudly showed us her straight fingers on the padded armrests of a power chair, the result of a long concerted effort with hand splints and stretching exercises. Beth asked her favorite therapist for advice about the splints for quads that were generally recommended. As always, Laraine presented both sides of the issue. The rigid splints extended from the fingers to the elbow and could interfere with sleep. Others slept fine with the splints and wore them religiously. Laraine explained that for quads, straight fingers could hinder the ability to grasp items well with the tenodesis reflex. That made it an easy decision for Beth. She discarded the splints and chose more function over form. She owned wheelchair gloves but rarely used them, since she liked the ones with individual fingers that took a long time to put on. When meeting new people, she never hesitated to extend her calloused fist for a handshake, not worried about how her hands looked. Beth’s confidence was growing; she had more at 14 than I had at 42, though I worried about doors being closed to her because of her disability. The first year after her injury, I thought it was inevitable that her attitude would crash and burn at some point. I’m glad that I was wrong. More years would pass before I realized that she had the world at her fingertips, even after her injury. From Beth’s point of view, every door was open.
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 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Eager to get back in the water, Beth asked for a schedule of open swim times at the Green Springs rehab center. I never—ever—suggested going to a pool. Life was too overwhelming. However, I rarely questioned or discouraged her ideas. Plagued by guilt, I felt like the last person who should say no. In the warm water pool with me instead of a therapist, Beth moved to a floating position by herself after hanging on at the wall. After a few laps, she asked about something new. In the middle of the lane, after sinking, she tried to get on her back to float (and breathe), but without a wall to grab onto, she couldn't keep her head above water long enough to get on her back. Yet. Afterwards, the rehab locker room overflowed with elderly ladies getting ready for a class in various states of undress. On the way home, Beth asked to pick up a pool schedule at our local YMCA. I talked to Laraine to find out if a typical pool with a cooler temperature might trigger autonomic dysreflexia, and she said yes. I needed to be alert for flushing of the skin, a pounding headache, sudden changes in heart rate, and dizziness. And high blood pressure that could trigger a stroke. I put a blood pressure monitor in her swim bag. “I taught myself how to swim on my back independently,” Beth said. “I slowly progressed to swimming laps at the YMCA.” At Tiffin’s one indoor pool, I lowered her from her wheelchair to the deck and then again into the cool water. No scary symptoms surfaced. The pounding headache belonged to me. I stayed close in the water and followed her leisurely floating back and forth, arms waving under the surface. It appeared to be smooth sailing, but I knew better. Turning around at the wall alone required strenuous exertion. Ten minutes with frequent long breaks made her arms tremble. The lifeguard didn’t know how to operate the sling lift, so I squatted at the edge of the deck. With Beth in the water with her back to the wall, I reached under both of her arms and pulled up, thoroughly scraping her back in the process. I felt like an awful mom. I couldn’t lift her from the deck to the wheelchair by myself, so I asked the lifeguard to grab her knees while I lifted under her shoulders. Others stared as both of her legs extended in bouncing spasms. I bent her knees and put her feet back on the footrests as quickly as possible. I had more lessons to learn. The second time at the YMCA pool, Beth’s foot twisted in the metal of the wheelchair when I lowered her to the deck. My fault. I had focused on a smooth transfer, not on her feet. She felt no pain, but spasms intensified in her legs, her body’s indicator of a problem. She tried floating, but too many spasms made her uncomfortable. I managed to lift her out of the pool without scraping the slow-healing scabs on her back. The next day, Dr. Miller examined the swollen foot and an x-ray, too early for the stress fracture to show. She prescribed a muscle relaxant to tone down the spasms. The foot would heal on its own without any weight on it. I was grateful that Beth couldn't feel the pain of the injury, but it felt like an odd kind of gratitude. I couldn't refrain from wishing that she could stand and walk—and yes, feel pain in her legs and feet, too.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
After I quit my job at the high school, our new normal changed for me from an onslaught to simply overwhelming. Beth attended school most days and I met her there over her lunch period. Life continued to be exhausting. Even so, Beth looked forward to physical therapy. I watched her complete the beginning steps of a therapy session in November, six months after her injury. Progress was obvious. She no longer needed complete assistance with hand-over-hand guidance, but she also could not move out of her chair independently. Laraine caught Beth when she tipped too far forward to pull a wheelchair brake, helped her scoot over on a sliding board, and steadied her as she sat up on the mat table. At a time when every movement on land required focused exertion, Beth found unexpected freedom in the water. Not a swimmer before the injury, she needed more trials with more sinking before she could stay afloat on her back for more than a few moments. Waving her arms underwater moved her backwards. When she lost her balance and tipped over, she couldn’t get back in a floating position or get to the edge of the pool by herself—or get her head up to breathe. At the pool wall, she held herself up with both hands, then tried and failed, over and over, to get on her back without help. Weeks later, Beth invited Laraine and Jill to her last therapy session in the rehab pool. In the water with another therapist, my youngest attempted to float on her own, unsuccessfully. Sinking, she worked her arms in a burst of effort, raised her head, reached up to the wall with both hands, and caught her breath. After another try, she positioned herself on her back and waved her arms underwater to stay afloat, to breathe, and to move very slowly across the small pool. Eventually reaching the opposite wall, she grabbed the ledge with effort, using both hands. In an impressive feat of balance, Beth achieved a floating position independently again and dragged along a sinking trunk and legs through another lap. “Once she entered the water, wow,” Jill said. “It was awesome!” Seven years later, after setting 14 Paralympic American Records, Beth told a Harvard reporter, “I discovered I had good water technique and was able to keep myself afloat pretty well. Not at the beginning—it obviously took me awhile to learn how to swim.”  (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.”  (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’s decision to leave the rehab hospital early ramped up preparations for her return to home and school. At a July meeting with staff at the high school, she expressed no concerns about her first year in the sprawling building or her inability to do almost everything. I obsessed over every detail, trivial or not. I planned to meet Beth at school over her lunch break, so I requested a cot. A storage closet with an attached bathroom was converted into her private locker room. It included a small vinyl mat table. I also would be on call before and after lunch, so I signed our first contract for cell phones, ready with speed dials. We dropped physical education and band (trumpet) from Beth’s schedule and added two study halls, including one at the end of the day that she could skip to leave early. Three afternoons a week, we would drive straight from school to physical therapy in Green Springs with Laraine. Beth would not need to stay late at school for volleyball team practices and games, as we had planned before her injury. Her last weeks in the rehab hospital, John and I converted our living room into a first-floor bedroom. He removed the carpet and put down linoleum so the floor would be easy to wheel on. I bought a hospital bed and a cumbersome shower chair with rails for our one small bathroom. There wasn't enough time to build a bigger one. I tried to focus on anticipating what Beth would need, but my guilt over causing her disability would not be ignored. Averse to pity, I avoided everyone except my family. Even with my husband and children, the last thing I wanted was to cause them more worry. I made a heroic, but ultimately futile, attempt to bottle up my emotions. Planning for school turned out to be easier than going to school.   (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.)
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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