(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Managing the group home escalated my headache with less sleep and a full dance card. The base level of pain had gradually increased over a dozen years. How bad would it get? Over-the-counter medications didn’t make a dent. When I tried an opiate after surgery, I felt worse, not better. A prescription anti-inflammatory muted the headache—and increased my stroke risk. I read a study about how the brain gets wired to frequent pain signals, making it difficult to break the cycle. Obviously. I made a concerted effort to stay positive and suppress my fears of higher pain. At home, I kept up with Beth and drove her to swim practices on my evenings off. She took on new roles, unafraid, including the top job of news editor of the school newspaper, The Tiffinian. A feature in the paper titled Senior Superlatives reported on a class election that voted her most likely to be President and most likely to be rich. “I didn't want both so I gave the rich title away,” Beth said, with a laugh. The votes of her classmates also put her on the Homecoming Court, surprising her. “I was shy in high school,” Beth said. “I had more fun than most, but I wasn't a cool kid.” The night of the Homecoming football game, the Court arrived at the stadium in convertibles before lining up on the track to be presented to the crowd. A problem we didn’t anticipate handed Beth a rare defeat. “I wheeled myself everywhere, but my escort wanted to push my chair across the field,” she said, while also admitting the bumpy turf was difficult. It was a standoff on the 50-yard line, her escort equally as stubborn as Beth. She reluctantly gave in. “But I kept my hands on the wheels and pushed myself at the same time!” When the pageantry ended, Beth sat with her best friends on the platform in the student section to watch the game. Ellen and Lizzy gave her a bouquet of flowers and an adorable present. They made a Build-A-Bear and dressed it up with a fancy dress, homecoming crown, magic wand, and queen banner. They had been sure Beth would win. She didn’t, and hadn’t expected to. But... The queen bear was a sweet reminder of friends always in your corner.
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) I stopped counseling since I was perfectly fine. After all, I finally made progress in the wake of three years of weekly sessions. Guilt and anxiety no longer dominated my days, which felt like a monumental gift. I scheduled dentist appointments to fix my second cracked molar, casualties of teeth clenching—despite the biteplate I wore each night. My doctor added a temporary muscle relaxant at bedtime to reduce the clenching. A high dose of Celebrex usually tempered the headache and kept me moving. I watched Beth hold a pen awkwardly in her right fist, not hesitating as she wrote her motto on a Challenged Athletes application. ANYTHING IS POSSIBLE. She wholeheartedly believed the motto was true. And it really was, though only for her and a small percentage of other people with her priceless perspective. Those with and without a disability. I filed away a note to myself that said, “Anything is possible, except when it’s not.” I intended to write about how she dismissed all she couldn’t do as irrelevant. “I think walking is over-rated,” Beth said, with a smile. Unable to stand and not focused on a far-off cure for quadriplegia, she continued to work hard to defy the usual limits of quad hands. Her spinal cord injury erased normal finger function. Even so, she wouldn’t write off any fine-motor tasks she really wanted to do. One example of many: putting her hair up in a ponytail after trying several times a day for two years. A tribute to unwavering belief and persistence. As Beth's last year of high school started, she quietly completed an early admission application to Harvard, convinced it was a long shot. “I didn’t tell anyone since I didn’t think I would get in,” she said. If someone asked about college plans, Beth mentioned the University of Michigan, one of the colleges she planned to apply to after she heard back from Harvard in December. NEXT: A new job! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The logistics of swimming with quadriplegia evolved. Beth wore her one-piece suit to the Toledo or YMCA pool, but partway, up to her waist, with loose sweatpants over the suit and a T-shirt on top. In the locker room, I took off the shirt and pulled up the suit to put the straps in place. After a practice, I helped with the sweatpants over the wet suit before we headed home to shower. With improved, but not normal, balance, she asked to try the white plastic bench again. It worked with my help and we happily gave away the cumbersome metal shower chair with the rails. Five months after our Seattle trip, Beth achieved what I thought would be impossible. I watched at the YMCA pool as she advanced forward on her stomach for the entire 25-yard length for the first time, her arms working wildly below the surface but advancing at a snail’s pace. Her legs dragged behind. She conquered the basic balance of forward motion—without approximating a swim stroke. I expected her to stop at the wall after the 25 yards. Instead, she took only a moment to take a bigger breath before pushing off with her arms and going a little farther. Back on the wall to rest, she flashed a happy smile my way. Priceless. I returned her smile. All of my worrying and waiting for her optimism to plunge into depression had been wasted. Thankfully. For Beth, the achievement was only a small step toward a bigger goal. At the swim practices that followed, she worked on increasing the forward distance. And tried to add the arm movements of the butterfly, which seemed more doable at first than the breaststroke and freestyle. Her attempts to circle her arms out of the water while moving forward resembled a clumsy, erratic butterfly. Her backstroke had started in a similar way before finding a regular rhythm. I admired her tenacity, but I wasn’t sold on her mission to get better and swim all the strokes. No one knew how far she could go. I expected an impassable physical barrier to abruptly halt her progress. Not Beth. Legs and hands that didn’t work were a given. She accepted that her damaged arm and trunk muscles would not strengthen nearly as easily or nearly as much as perfect ones. Willing to wait weeks and months for small bits of progress, Beth tapped into a well of stubborn teenage persistence. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The Michigan Wheelchair Games took place in May at an old high school complex with several dozen participants, plus family members. Since Beth was a first-timer, officials measured her muscle strength, tested her in the water, and assigned her the S2 classification on a scale of S1 to S14. Those labeled S1 and S2 had the most severe disabilities and the least physical function. The track events were first. Beth didn't have a racing chair and her friends' chairs didn't fit, so she stayed in her own wheelchair and pushed herself around the track. I joined a small group of enthusiastic, cheering spectators. The atmosphere at the pool could barely be called competitive. Races included both sexes with any classification. Beth's times would be compared with other S2 female teenagers. Since there weren’t any others at the meet, she would automatically take first place in her races. That was our first hint that few quads could move independently in the water. I lowered Beth to the deck first, and then into the water at the side of the pool where a gym mat had been placed. Minutes before, we had to ask how the lane numbers corresponded to the lanes. For the first time, she treaded water longer than usual to dunk under lane dividers with effort to get to her assigned lane. For the first race of her first meet, Beth swam a very slow, sloppy backstroke for 50 yards, two lengths of the pool, not knowing how to push off at the start, how to turn at the wall, or how to approach the finish. It also was the first race for another teenager who had never been alone in the water before and could not swim any strokes. It was painful to watch her unhappy struggle. She zigzagged in her lane before gently bumping her head on the ending wall, panicking, and going under. Her father immediately jumped in with his clothes on, when he could have reached her easily from the deck. I wondered if parents of a child born with a disability tended to be overprotective? Though I had no right to judge after failing to protect Beth the night of her spinal cord injury. “At my first swim meet, I met Cheryl, a Paralympic swimmer, and her husband Shawn, a Paralympic coach,” Beth said. “They encouraged me to compete nationally.” We learned from Shawn and Cheryl that just five weeks ahead, the annual USA Swimming Disability Championships would be held in Seattle. When another swimmer, a para, asked if she should go, too, Shawn hedged a bit. I jumped to the conclusion that Beth possessed some kind of exceptional swimming skill that wasn’t apparent to me. (She didn't.) Shawn told her to go to Seattle and “see the possibilities,” a clear invitation to adventure. Our world shifted, again, as it had the night of the car accident. During the two and a half hour drive home from the Michigan games, Beth played John Mayer’s new CD, and sang along with her new favorite tune, No Such Thing. It became her buoyant anthem to the future, replayed again and again, the lyrics etched in our memories — infused with the essence of vague but powerful anticipation. “I just found out there’s no such thing as the real world,” Beth sang. “Just a lie you got to rise above. ...I am invincible, as long as I’m alive!” I wished that were true. (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 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.” Our story continues from the moment in my first blog post when Beth tells me that everything will be okay. The Jaws of Life frees her from the car. She is rushed to a helicopter, blades spinning. “I was, strangely, very calm,” Beth wrote in a school essay. “A nurse told me I was in shock. The doctors stuck many needles in me during the helicopter flight that seemed to last only a minute. I found out later that these were high doses of medicine that slows the chain reaction of nerve damage. I landed at St. Vincent hospital in Toledo." "I was taken to an exam room and they cut off my clothes. They jokingly asked me if those were my favorite jeans, and of course, they were. When I was taken to a room in intensive care, my dad asked me if I wanted to know what the doctors had just told him minutes before: I was paralyzed from the chest down. I believed it, but it did not scare me.” I was scared enough for both of us. The single tragedy of not walking spiraled out of control with shattered neck bones, surgeries, a cut spinal cord, paralyzed organs, and serious health risks of quadriplegia. I waited on edge for her optimism to crash. I felt like nothing would ever be okay again. Beth's morphine haze faded as we prepared to leave intensive care for rehab, ten days after the accident. Her experience continued to be different from mine. "Accepting my new disability never was a real issue for me. The issue was what needed to be done next." My daughter's disability was entirely my fault. All the things that a mom should do? I failed at the most important one, to keep my child safe. Beth was fourteen years old when I fell asleep at the wheel. She watched the car flip three times and land upside-down in a dark Ohio field. Unable to move on a bed of glass, Beth reassured me, saying, "I'm okay. Everything will be okay." And it was. Eventually. In time. I wish I had known that at the beginning. Despite my life's work with disability, I could only see everything that she had lost. Because of me. At first, I thought that Beth would be limited by her spinal cord injury. Today, I am happy to have been wrong. This new blog will share the highlights of an amazing journey. I hope you will come along! |
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