(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) An unexpected invitation led to an eight-hour flight. U.S. Paralympics Swimming invited Beth to attend the Canadian Open SWAD (Swimmers With A Disability) meet in August with the National Team. My daughter accepted before we looked up the location of Edmonton, Alberta. From Tiffin, the trip would cross almost 2,000 miles. We invited Peggy to join us. We packed Beth’s brand-new passport and her iPod, with a new playlist for meets. For her second flight since the accident, we kept her wheelchair until she boarded the plane. I helped her transfer to an aisle chair on the jet bridge, then grabbed her chair cushion and left the chair, tagged and gate-checked with strollers, to lower the probability of damage, at least a bit. I imagined the wheelchair on top of the luggage pile instead of under it. We traveled in style when an airline clerk upgraded our economy tickets to first class, our initiation to warm hand towels and extra soda. A welcome distraction for a long flight, with full meals instead of the snacks offered in the cheap seats. I helped Beth shift and raise her legs periodically through the eight hours in the air. When we landed in Alberta, Beth’s wheelchair had a bent wheel that made it harder to push. Traveling necessitated frequent repairs, especially replacing worn out wheel bearings. They wore out quickly after getting drenched often during locker room showers. The many countries at the meet created a festive atmosphere. Each team wore national colors and a country’s flag hung near the deck bleachers claimed by a specific country. The stars and stripes hung from the front of the high spectator seats where I watched with other U.S. fans. I understood that Beth didn’t want to be the only one sitting with her mom and wearing a Team USA shirt. Peggy assisted her on deck. I had a deck pass so I could help in the locker room. An unanticipated perk of the pass allowed me to take pictures on deck during medal presentations. Still somewhat shy, Beth made more of an effort to meet other teammates while I talked to other parents. They shared news of grants from the Challenged Athletes Foundation to help with the costs of competing. Also, three teenagers on the U.S. team had recently learned they shared the same birthplace in Russia. They had limb differences and had been adopted by U.S. families who lived in different parts of the country. I listened to stories, from cerebral palsy at birth to a young girl’s sudden-onset neuromuscular disorder. She walked home from school one day and collapsed on the floor. Life can change in a moment. Everyone has a story... Next: First International Medals!
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Hundreds of participants converged from all over the country for the Junior National Championships in Connecticut. Like Beth, many teenagers lived in places where they were the only ones with a visible disability in their class or school. At registration, we recognized a few teenagers from the Paralympic meet in Minneapolis two weeks before, and another from the Ohio Wheelchair Games. None of Beth’s friends from the Raptors had been able to join us. The first day, we found the large field house with many ping-pong tables set up and ready to go. Beth experimented and found a better way to use the tenodesis grip to angle the paddle by tilting her left wrist more. She decided to test how far she could lean to reach the ball without tumbling down, so at her request, I reluctantly removed the two armrests on her wheelchair. Beth surprised both of us by winning several games without falling to the floor. The armrests never went back on her chair. After the table tennis competition, caterers served a simple meal for the athletes and parents in attendance. Young servers stood behind the buffet table and wore clear plastic gloves to set out food. As we ate, a frustrated mom confronted the workers about the latex gloves they wore. Her son had a latex allergy, more common among kids with disabilities than the general population. (Thankfully, Beth never had a problem with latex.) I agreed with the mom about the need to use latex-free gloves at a disability event. Though I also felt sorry for the teenaged servers who were not personally responsible. At the swim competition, wheelchairs surrounded the pool. When Beth raced, I walked alongside on the deck. In her sights, I pretended to be a coach by waving my arms, the signal to kick harder. She set several new wheelchair sports records for her gender, classification, and age group. Not the coveted Paralympic American Records. Next destination of a non-stop summer: Mystic, Connecticut! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth’s second swimming summer began with a twelve hour drive from NW Ohio to Minneapolis for her second USA Swimming Disability Championships. Swimming remained complex and challenging, but she drove through Chicago on congested highways with ease. Our flight to Seattle a year earlier was the only time we had been west of Chicago. Our hotel sat across from the parking lot from the expansive pool complex at the University of Minnesota. The first morning of the meet, we met her coach and teammate at the pool. Beth, sixteen, asked me to stay nearby, since I understood her developing routine with goggles, swim caps, towels, bathroom breaks, positioning, and showering. For me, that meant hovering at a distance on the bleachers until she wanted my help. I didn’t mind. I supported her quest for independence, though none of us knew if more progress on that front was even possible. Waiting to swim, new records set in fast races intimidated her. Expectations soared along with nerves. As Beth predicted one year earlier, she qualified for finals. Her previous national meet remained the only one where she had not. Despite the achievement of finals cuts, her morning races were sluggish, followed by discouraging finals times. After another dawdling race on the second morning, Beth’s frustration grew. The only S3 woman at the meet, she would win each race, a fact she did not appreciate. She wanted to achieve swim times close to her best ones—or faster. Immediately after the second morning’s races, time trials allowed swimmers to clock official times in events of his or her choosing. I made a rare request to her coach. I asked him to sign her up for a time trial in the 200 back. Three years after her injury, Beth earned her first official Paralympic American Record in the S3 classification for the 200-meter backstroke. We both knew it was the easiest record to beat, but I reminded her that just a year earlier, she wasn’t strong enough to swim nonstop for 200 meters. As I anticipated, the success tempered her disappointment with other races. We tumbled into the predictable schedule of a three day meet for swimmers who qualified for finals: wake up, warm up, race, cool down, eat, recover, rest, and repeat. And phone calls to John, Ben, Maria, and Peggy. The last day of the meet, after prelims, we strayed from the routine to visit the Mall of America. Beth let me push her wheelchair, a rare occurrence, to preserve her strength for finals. That evening, we laughed with her coach after she swam her fastest race of the meet after shopping. Even so, her resolve to work harder magnified. “Once I realized I was good in the water,” she said, “I trained really hard and put a lot of focus and effort into it, because it was this new avenue for me. I hadn’t thought I could be an athlete anymore.” After Minneapolis, Beth set ambitious new goals. In addition to mastering the forward freestyle, far from being attained, she aimed higher for the ultimate American Record in the 50 meter freestyle, by far the most difficult S3 record to beat. The second destination of a non-stop summer: Maryland! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
A busy summer stretched out before us. Beth signed up to volunteer at St. Vincent again. She accepted a part-time job in an office and bought tickets for a John Mayer concert. She registered for Ohio’s Youth Leadership Forum, a five-day event for teenagers with a disability. I scheduled college visits around her first and only National Junior Disability Championships in Connecticut. Plus swim practices a few times a week and competing at her second USA Swimming Disability Championships. One thing we didn’t anticipate: a mid-summer invitation that would require an eight hour flight one way. Before summer school started for John, he drove Beth and I to the Chicago Shriners Hospital instead of traveling in the Shriners van. (We had a side trip planned after.) The occupational therapist gave Beth adapted tools to try, including a rocker knife with a knob handle to cut food. The progression of her kyphosis and scoliosis had significantly slowed. A doctor told us that swimming strengthened back muscles, and if the trend continued, she would not need surgery. No fusing the spine with a metal rod that would limit her flexibility and movement even more, in addition to risking more spinal cord damage. One of the teenagers we met at Green Springs could walk before fusion surgery left him with paraplegia. A hand surgeon recommended muscle transfer surgery to give Beth working thumbs. She politely told the doctor that she could use them without surgery, thank you very much. Even though her tenodesis grip was a feeble skill compared to controlling each thumb individually. She refused to consider muscle transfers since the procedure required several weeks of complete dependence afterwards. She wouldn’t give up any of her hard won independence. The Shriner’s social worker asked about college. Before the accident, we assumed Beth’s college would be in Ohio. She decided to major in biology and made a short list of possible colleges with top biology programs. All out of state. “The travel I did with swimming opened up the world to me,” Beth said. After more doctor appointments, we drove across town for a brief look at the University of Chicago. The next day, at the University of Illinois, we met with wheelchair sports staff. The University of Michigan impressed us. She also had toured other colleges with her brother and sister in the past, including Case Western in Cleveland. Beth considered Duke in North Carolina and Johns Hopkins in Maryland, but there wasn’t enough open time to visit both before her senior year of high school started. The first destination of a non-stop summer: Minneapolis! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
“I often swim with non-disabled swimmers at ‘regular’ swim meets,” Beth said. “Many people are surprised that I compete in swimming since I use a wheelchair, and it has been fun for me to show how people with disabilities can be competitive in sports just as much as others.” Coach Peggy had a passion for swimming that I had not seen before. She enthusiastically approached every practice with new ideas, willing to try until something clicked. She did not rely on standard drills and techniques for able-bodied swimmers. The shared excitement of small successes propelled Beth forward. “It was a new adventure for me,” Peggy explained. “I was in the water with anatomy books on the deck and I would ask her to move certain parts of her body, and then I’d try to trace where the nerve ending connected to the muscle. The light bulb went off then because I understood that she didn’t have the necessary nerves firing to do a particular movement. So we’d try a different movement to attempt the same goal. It took a lot of trial and error, but she was very willing.” So was her new coach. Peggy’s focus gradually changed, “from what she (Beth) didn't have to what she did have access to.” Beth registered for her second USA Swimming Disability Championships, to be held in early June in Minneapolis. Her times at recent meets qualified her to attend the meet as an S3, as she had predicted at the last one in Seattle. At the YMCA about twice a week through the spring, I walked the nearby track instead of staying poolside to read. I didn't need to watch for her head dipping too long underwater anymore. She had learned how to adjust and continue with muscle spasms. She stayed in the pool 30-40 minutes with breaks when she was on her own. Practices with coaches always ran longer. We drove to Toledo at least once a week. Beth combined a practice with a new favorite: volunteering at GTAC’s WaterWorks to teach safety skills and basic swimming to young children with a disability. One Saturday, she spoke to the kids about her spinal cord injury before getting in the water with them. The first thing Beth taught them was how to roll on their backs to breathe. Just like she had been taught at her first water therapy session after her injury. Beth loved WaterWorks Saturdays, the highlight of her spring. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
I worked at not being a pushy parent and continued to follow my 16-year-old daughter’s lead. If Beth asked to go to the YMCA pool to practice on her own, we went, but I never suggested it. I worried about her getting run down from pushing herself too hard. Everything took more time and effort with a spinal cord injury. After Beth figured out the balance needed to move on her stomach in the water, the butterfly seemed to be the most doable forward stroke. She took a breath after two arm strokes of the butterfly, as she did with the backstroke. Breathing was more of a challenge with her initial freestyle attempts, but the breaststroke was the hardest. “When I first swam the breaststroke, I went backwards,” Beth said. Once a week in Toledo, she tried to learn the butterfly, freestyle, and breaststroke. A coach sometimes worked with her in the water before her backstroke laps. At her practices without a coach at our local YMCA, she experimented with the forward strokes, despite impaired arms and no use of her legs. Beth competed with the butterfly for the first time at the Turkey Meet in Toledo on Thanksgiving weekend. She loved how it felt to fly (slowly) through the water. She also selected her events for the Ohio Senior Meet in March. With typical courage, she signed up for the 150 Individual Medley (IM) that included strokes she could hardly swim. A week before the March meet, a Toledo coach suggested dropping the IM. Beth talked him into keeping it. It wasn’t smooth or pretty, but she swam the butterfly and breaststroke (and backstroke) nine months after Seattle at the Senior Meet in Erlanger, Kentucky. I lifted her out of the pool while the packed crowd applauded. Beth and I hadn't known that our hometown had a swim club — until they attended the same Senior Meet with their coach, Peggy Ewald. We had only known about the high school's team. Peggy talked to Beth’s Toledo coaches and volunteered to help with some of her solo practices in Tiffin. We met Peggy at the YMCA pool about once a week as Beth pursued her quest to master all of the strokes. They took on the intricate details of moving and breathing in the water. “Coach Ewald was excited to work with me from the first time I met her,” Beth said. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) After every swim practice, Beth leaned into a corner, put her hands up on the ledge, and raised her body up as far as she could — before being lifted out of the pool. A familiar dynamic: complete assistance very (very) slowly becoming partial assistance, with her clear expectation that it would be no assistance in the future. As a junior in high school, Beth managed to keep up with a full school day, swim practices, volunteering, and extensive homework. She typed lab reports and essays on a standard computer keyboard. The early version of DragonSpeak, voice recognition software, never was used. She didn’t use the typing aid I bought that strapped on her hand or the supports to rest her forearms on. Beth used three fingers to type. She always relied the most on her left index, the only finger she could move a few inches, to press down on the keyboard. The useful left index also worked her laptop’s built-in mouse, set to respond to a soft touch. The same finger also hit letter keys on the left side and center. The index and pointer on her right hand contracted in an arc and focused on the right side of the keyboard. To type with those two fingers, she had to move her right hand to place a fingertip on a specific key, since she couldn’t move those fingers. When a finger or hand spasmed, she used another and kept going. Her accuracy was amazing, but in high school, her typing (and handwriting) was significantly slower than her peers. Against my advice, she took the American College Test (ACT) with no accommodations. Beth stubbornly refused extra time for assignments and tests. Her application for a lift chair to use at the pool was approved. We met with senior students at the University of Toledo who took Beth’s measurements and discussed the design. The chair would have a standard seat with back support and a toggle switch powered by a motor with a rechargeable battery. Sitting on the seat, she would push or pull a toggle switch to lower or raise the seat. The finished project impressively accomplished the task. At the YMCA, Beth stayed in her manual chair while I pulled the lift chair to a spot on the deck close to the water. She adjusted the seat bottom of the lift to a position slightly lower than the seat of her manual chair before moving onto the lift by herself. She used the toggle switch to move the seat down to almost floor level. From there, she used her arms to scoot to the deck and into the water without assistance. Unfortunately, we could not store the chair at either pool. I could barely lift the heavy device to put it in and out of the car, so it found a home in our living room. Beth used the lift chair to get on and off the floor independently, sometimes stretching out to do her homework while a familiar movie played in the background. Austin Powers movies were comedy favorites. John made the girls laugh with lines from silly movies. Beth found humor in her disability that her friends and family shared. At school, a friend scolded her for not standing up during the Pledge of Allegiance. When Beth’s friends gathered at our house, I loved to listen to their easy laughter.
Next week: more swimming serendipity... (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.) Two and a half years after Beth’s spinal cord injury, I expected a gradual catharsis with my weekly counseling. But sessions still only stirred up tearful regrets for causing the accident. I thought that I must be doing something wrong, that I failed at therapy. After, I sat in the car, breathing deeply, until I carried no visible baggage home. I scheduled more appointments, hoping to find the person I had been before the accident. I was determined to redeem myself with Beth, though others needed me, too. And I needed them. I was intensely grateful for the people in my life. I wished gratitude could cure anxiety. Trying to look normal was a challenge on days when worst case scenarios dominated my thoughts. I had to concentrate to pay attention, even with my immediate family, though there was no lack of love or genuine interest. Unlike Beth, I had no grand goals. What I basically wanted — after magically erasing Beth’s injury — was the absence of pain. No headache that ebbed and flowed. No guilt and depression. No anxiety that also ebbed and flowed. Some days, Beth emanated vulnerability, a lifelong quad perpetually haunted by scary health risks: autonomic dysreflexia, serious infections, bladder stones, blood clots, and pressure sores. On other days, she looked to me like the happy and healthy teenager that she actually was. As a high school junior, Beth never saw the need to say no to extra activities. On top of AP classes and too much homework, she volunteered for fundraisers with the Raptors and for community events with the National Honor Society. She wrote for the school newspaper and worked on the yearbook. She followed her brother’s lead and earned a spot on the Quiz Bowl team. Her specialty: literature. A doctor also asked her to exchange emails with another teenager with a new spinal cord injury. Beth needed me less often, but I was there when she did. At the YMCA pool, on her forward motion quest, she progressed to spending more time with her head above water than under it. I read a book again while I sat on the bleachers, instead of watching every minute. One evening, she finished a backstroke lap as her high school’s swim team arrived to practice. As a few friends stopped to say hello to her, their head coach, Peggy Ewald, introduced herself to Beth... A fortunate accident. Serendipity. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) “For the first time, I began training with swim coaches,” Beth said at 16. “I am one of two swimmers with a disability on GTAC (Greater Toledo Aquatic Club).” Beth drove us in her little blue car to swim practice once a week; the GTAC pool was an hour’s drive away. She was a good driver, and sometimes joked with a quote from Rain Man: “I am an excellent driver.” Even so, when another driver cut her off on the highway, I couldn’t stop myself from crying out. I was instantly transported to the anguish and fear of the accident. I quickly apologized for my reaction and praised her for handling the close call well. During a long morning practice, a coach sometimes jumped in the lane with her to better direct and experiment, since no instructions existed for teaching a quad to swim. They worked on her backstroke. The afternoon of the same day, we drove across town to St. Vincent, the hospital where she had stayed in intensive care. Her idea, not mine. “I volunteered in the outpatient physical therapy department for one afternoon a week,” Beth said. “This was a particularly interesting assignment for me since I was still going to outpatient physical therapy as a patient at a different hospital closer to my home. I liked being busy with bed-making and clerical work, and it was easy to relate to the staff and patients.” Beth initiated visits to the Tiffin YMCA pool with me where she approached every practice on her own with a singular focus: swimming forward, not back. With hands that could not cup the water and useless legs that dragged behind, she tried to propel her arms underwater in front of her body. Not attempting a swim stroke, she concentrated on just forward motion several seconds/inches at a time, undeterred by the sheer difficulty of what looked impossible. When her arms faltered and she couldn’t keep her head above water, she rolled on her back to breathe and to get to the wall where she took a break before trying again...and failing again. And again. After only a handful of GTAC practices, we drove to her first competition as a member of the club. The Ohio Senior Meet in Athens took place one month after Seattle. Still shy, Beth rarely practiced with swimmers her own age, so she stayed close to me at the meet instead of hanging out with the other GTAC teenagers in a designated corner. Swimmers amassed everywhere. Beth took the lead when we had to pass through the crowd. She repeated “excuse me” until she said it loudly enough to pass by. Sometimes she reached up and tapped someone lightly with her fist to get their attention. In the packed bleachers, some of the moms were perfectly coiffed and dressed to a T. Never fancy, I was easily intimidated. I was learning that club membership involved expensive dues, swim gear, meet fees, and a wide range of travel-related costs. The backstroke was Beth’s only option at the Ohio Senior Meet. During a race, she swam the final leg by herself. She didn’t swerve in the lane as she had in Seattle four weeks before. The crowd on the deck and in the bleachers applauded as she finished. |
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