 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 team 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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 My job as group home manager started with a bang. My new boss handed me keys and suggested I meet the residents over the weekend. If the woman on duty asked if she would be my assistant, I should tell her no.
Driving to the home, I passed the pay phone I didn’t use the night of the accident, as well as the field where my car flipped three times. I knocked on the front door and entered a dark, depressing living room. Four residents watched TV while a woman crocheted in a separate room in front of another TV. Most jobs didn’t allow time for staff hobbies, including ones at group homes. I kept quiet and observed. She asked about the assistant position and when I responded, she argued. Leaving shortly after with the residents for an outing, she hit my parked car with the company van. Presumably by accident. I worked three 24-hour shifts a week including weekdays while the residents usually attended a workshop. I drove them to numerous doctor visits. I also volunteered additional time when Beth was in school. A mess of paperwork needed to be cleaned up in short order for a state inspection and the house had been neglected to the point of being unhealthy. I bleached the mold on and in the refrigerator and cleared legions of powdery bugs from overhead lights. I scoured decades of yellow wax off the kitchen floor, cleaned mice droppings out of cupboards, and threw away infested food. My mom helped me replace the wallpaper to brighten the living room. My hectic paid hours focused on the residents and improving their quality of life. I gave a pep talk at a staff meeting to enlist help to raise the bar. Thankfully, the crocheting woman transferred to another home. I aimed for a level of care I would want for someone I loved. With few staff and fewer resources, I fell short. Though I took a small measure of pride in trying. I recognized the seriousness of my responsibilities, aware of my impact on the day-to-day mental and physical health of the residents. Group home managers doubled as underpaid psychologists, nurses, and nutritionists. I expected the job to be taxing, like my earlier Tiffin Center job, where most of the residents had grown up in an institution without a loving family. The difference at the group home? Working alone most of the time. I dispensed a complicated litany of pills, my least favorite part of the job—especially when a volatile resident refused to take his psychotropic medicine. Despite behavior plans I followed, I filled out scores of incident reports. I also slept poorly three nights a week on an uncomfortable day bed. But it wasn’t all bad. Three of the residents played on a basketball team and I cheered for them at games with the fourth. Other outings could be fun, too. Sometimes. In the middle of the night, a deaf resident occasionally switched on his TV and cranked up the sound. He giggled when a sleepy worker stumbled in and out to turn off the volume. I waited to smile until after I turned to walk out of his room. Next: Beth and Homecoming!  I had the rare gift of time as Beth started her senior year of high school. She didn’t need me at school midday. Never bored, I protected my free hours by not turning the TV on during the day. I personalized three mother’s journals, one for each of my kids, with childhood memories and family history. I picked up needlework and writing projects, humming along to classic tunes playing in the background.
I connected with Maria when she wasn’t at one of her jobs, college classes, or choir practices. Sometimes we met at Taco Bell to catch up over lunch. I called my parents on the phone and sent care packages to Ben at OSU. I walked for exercise. I met a friend for brunch most weeks at Bob Evans. When the waitress saw us approach from the parking lot, she had our iced teas ready. John never suggested I work outside the home in any way. We had enough, with his steady income and our frugal ways. But I convinced myself that I should return to a paid job for the school year until Beth started college. She gained more independence and encouraged me, assuming I wanted to work. Beth liked the idea of pushing the limits of her disability more often, and not relying on me when she was rushed or tired. I debated between a demanding job at better pay and a minimum wage job with less responsibility. With few choices in Tiffin, I decided to support adults with developmental disabilities. A job where I could make a small difference. A local agency offered me a group home manager position in a nearby town. A familiar job. Years earlier, a few weeks after my wedding and newly nineteen, I assumed the role of live-in manager at a different group home. John and I moved in before he started his first elementary teaching job. The year was 1977, during the first wave of the exodus from Ohio institutions. The best candidates for community living left first, including my four residents. Even so, the transition challenged everyone involved, every day. A few decades had passed since my first group home job, and some state institutions had closed. The exodus slowed to a trickle and included residents with multiple challenges. I accepted my new manager position on a Friday—without visiting the group home first. I hoped for the best. I could handle most anything for less than a year. Couldn’t I? Next: Overwhelming responsibilities!  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!  College applications covered our kitchen table before Beth’s senior year of high school began. She questioned the need for help at college her freshman year and wondered if I could live off-campus instead of in the dorm with her. Separate housing for me for any amount of time would add costs on top of her out-of-state tuition, room, and board. High college expenses seemed certain. John and I decided not to hold her back because of finances. We owned the Tiffin house and planned to borrow off it.
My second counselor moved away and the third nudged me forward. After nearly three years of weekly sessions, I had few tears left. I had been spinning in a rut, perseverating on my choices the night of Beth’s injury. As if I had a replay option. The new psychologist told me the accident could not have happened any other way. She framed it as less of a colossal failure and more of a perfect storm of events. I woke up very early that morning to set up a refreshment stand for the choir contest. John stayed home to study for his National Board test. The night of the accident, the OSU concert ran longer than expected. The psychologist’s next point hit home: I could not make a good decision (i.e., calling John on the pay phone), because exhaustion impaired my judgment. That fact somehow flipped a switch for me and allowed a measure of forgiveness. However, no amount of reasoning would be enough, if Beth had been unhappy. I gradually reduced my zoloft to a lower dose. As always, my headache tightrope remained, a precarious and somewhat mysterious balancing act to keep the level manageable. At home, Beth gathered summer mementos and made colorful collages with a small paper cutter. She used markers to add descriptions and funny comments on each page, approximating the calligraphy style she learned before her injury. She created a tribute to the magical summer in her first scrapbook. The last page listed 15 notable summer firsts, including her first US Paralympics American Record, her first passport stamp, her first tuna fish and cucumber sandwich, her first concert without a parent, and her first swim practice in the rain. Beth’s very best ‘first’ of the summer: wheeling around Harvard in Cambridge, Massachusetts.  Summer vacation wound down. At the YMCA, Coach Peggy tackled the difficult details of the freestyle. She moved in the water with the grace of a seasoned swimmer and often joined Beth in the pool to help with technique.
Learning how to swim mimicked the physical therapy process. Beth paid close attention to detailed instructions and understood the goal. Small gains and slow progress did not discourage her. She visualized the future goal and put the pieces together bit by bit. Peggy asked Beth to join the Columbian High School swim team for her senior year. I had reservations initially. I knew the team had a great coach. I wondered if Beth’s participation would be mutually beneficial or a token inclusion? A reluctant Athletic Director also needed to be convinced, especially since accessible school buses were rarely available. As a compromise, I agreed to drive with my daughter to away meets. Watching Peggy at more practices, I trusted her instincts on the merits of the high school team. “Coach Ewald was excited to work with me from the first time I met her,” Beth said, “and she’s helped me make all my strokes better.” Soon after the Alberta swim meet, Beth, 17, made the U.S. Paralympic National Swim Team, a milestone achieved much earlier than expected. We celebrated with Maria and John over frozen yogurt sundaes. Beth called Ben first with the news since he followed her progress and understood the complexities of her S3 classification. National Team status included team swimsuits and other gear, as well as stipends for training costs and specific meets. And a big stack of paperwork. Beth’s lung doctors signed a long form to allow her only asthma medication, a maintenance drug. She needed to submit training logs year round. Each practice became an official workout with a coach’s plan written in a swimming shorthand I never learned. Team status also required reports her daily whereabouts to facilitate random drug testing through USADA, the same agency that tested Olympic athletes. In August, I dropped off Beth and her friend at a John Mayer concert in Columbus. I easily imagined them singing loudly to the invincible lyrics of No Such Thing. The girls wore hipster hats bought for the occasion. Beth donned the same canvas hat with gray stripes during the 'Fishing Without Boundaries' weekend. John and I held hands and watched our talented daughters belt out a song in harmony on the karaoke stage at the hotel. On the boat the next day, Beth caught more Lake Erie perch than her dad for the second year in a row. NEXT! Wrapping up a non-stop summer: Fifteen Notable Firsts!  (This post continues my family's story. To see the earlier bits, click "BLOG" at the top of this webpage.)
At the Edmonton, Alberta swim meet, Beth met the other S3 women from Germany, Norway, Denmark, and Mexico. The women from Mexico and Germany held the top spots in the World Rankings; to race, they left their wheelchairs behind to stand and walk a step or two to the starting blocks. Their coaches helped them climb on and prepare to dive in. My daughter started the race in the water with an ineffectual push off the wall. With the tough competition, Beth didn’t expect to earn a medal for a top three finish. Also unexpected: the swimmer in the next lane stayed in her field of vision, sparking momentum. For the very first time in her life, she experienced how it felt to see and to race a true competitor, to beat her to the finish by less than a second, and to earn a third place international medal. Beth surprised us next with second place in the 100-meter freestyle race. Right after, officials tagged her for her first drug testing. They worked for the United States Anti-Doping Agency (USADA), the same agency that tested Olympic athletes. Officials stayed close by as a Team USA coach supervised her cool down laps in a separate small pool. From there, Beth participated in her first ceremony for an international medal. Next, the coach explained the test procedure and walked with her while USADA officials led the way off the deck. In the 100- and 200-meter events, Beth finished ahead of the S3 women from Germany and Mexico. She started to think of herself as a distance swimmer. The five S3 women in Alberta, Beth included, swam slower than their previous best times. Small health issues like spasms, skin scrapes, minor infections, and low-grade fevers had a bigger effect on those with severe disabilities compared to others who did not. Temperature changes impacted quads in a negative way, as well as not drinking enough water. The physical stress of traveling and time changes also factored in, one of the reasons that teams going to the Paralympics every four years arrived in the area weeks ahead of the actual event. Beth rested in between the sessions of the three-day meet. No sight-seeing in Edmonton, except for the hilly view from the airport. From the stands, I watched Beth on the deck. In between races, she laughed at the antics of the teenage boys on the team. They “borrowed” the Australian team's frog mascot and noisemakers, stoking a friendly rivalry. During her medal presentations, I used my deck pass to take pictures. Beth earned her first international medals, two silver and two bronze. Medals that mattered. We landed in Detroit to discover the airline had lost a sideguard, one of two small curved plastic shields to protect clothes from wheelchair wheels. A new shield cost $100. I bought one and started the long process to be reimbursed from the airline. After Alberta, she took the sideguards off before she boarded a plane. Next destination of a non-stop summer: John Mayer in Columbus!  (This post continues my family's story. To see the earlier bits, 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!  (This post continues my family's story. To see the earlier bits, click "BLOG" at the top of this webpage.)
The highlight of Beth’s summer: the Youth Leadership Forum of the Ohio Governor's Council on People with Disabilities. Students with a disability in their junior year of high school had applied to attend as delegates. Five days without parents would be a first for Beth and others, with personal care assistants available for those who needed help. I dropped Beth off at a fancy hotel in Columbus. I kept my phone charged and the gas tank filled, available at a moments notice. I could hardly wait to pick her up, even though she called every day and sounded happy on the phone. I kept busy, painting a bedroom with John. Maria and I went shopping and to Taco Bell in between her jobs. I met an old friend for breakfast. John and I spent a leisurely day in Findlay. We shopped, held hands at a movie, and ordered ginger chicken at our favorite restaurant. Still, I thought about Beth often. I worried that she would be reluctant to request help and get frustrated. I was right about asking for help, but wrong about her response. Driving home with me to Tiffin, Beth said, “It was the best week of my life!” I smiled, glad to hear it but hoping many others would be even better. The first night of the forum, she asked for help to get up on the higher hotel mattress. The other days, she figured out how to do it herself. She set her alarm early and worked to shower and dress completely on her own, allowing for extra minutes to zip zippers and button buttons. Proud that she could. After difficult but independent transfers, she even un-bunched her jeans by herself. Introduced to disability issues past and present, large and small, Beth learned about the fight for the Americans with Disabilities Act. The speakers discussed stereotypes and why many people with a disability did not have a job. Advocates talked about limiting Ohio’s handicapped parking permits to those who needed them the most. One session explored ramifications of denied access and how to work for change. Information mixed with social events. “The staff was great and there were a number of outstanding speakers,” Beth said. “The event had a big impact on my life my first year as a delegate.” The forum anchored Beth to others with a disability. She met delegates, staff, and speakers with epilepsy, cerebral palsy, paraplegia, quadriplegia, dwarfism, learning issues, mental illness, and brain injuries. Some were blind or deaf. She accepted an invitation to report on the Youth Leadership Forum at the annual meeting of the Ohio Governor’s Council on People with Disabilities. “The Ohio forum proved to me that the disability community is widely diverse and vitally important.” Next destination of a non-stop summer: Edmonton, Alberta!  (This post continues my family's story. To see the earlier bits, click "BLOG" at the top of this webpage.)
Beth made a last-minute request to spend a day at Harvard in Cambridge before returning home. We drove through New Haven, Connecticut, on the way to Massachusetts. I pointed out a sign for another college. “Would you like to visit Yale?” I asked. Her answer? A definite, “No.” She had no interest in any Ivy League college, with one exception. Beth explained in a scholarship application: “Harvard first got my attention because of the national billboard campaign, which suggests an appreciation of the contributions that students with disabilities can make.” Harvard turned out to be more than we expected. A student guide led us through one of the ornate gates into Harvard Yard. The stately buildings, iconic statues, and courtyards with high canopies of ancient trees made a charming first impression. All around us, students and tourists spoke many different languages as the guide shared fascinating history. “I toured the Harvard campus,” Beth said, “and just fell in love with it.” We explored Harvard Square on our own after the tour and ate pizza at Bertucci’s for the first time. The brick sidewalks on some of the streets slowed Beth down, but she never complained. The essence of the Square assaulted the senses, a loud urban setting with too many people, bikes, cars, and taxis. Street performers held the attention of people from all over the world. The intense, diverse humanity of Harvard Square held a charm all its own. Back home in Ohio in early July, Beth worked part-time in the local Community Action Commission, photocopying, filing, and answering the phone. She invited Ellen, Jackie, and Lizzy to pose with her for senior pictures with a local photographer. She swam with GTAC about twice a week at an outdoor pool, even when it rained, and volunteered after practice on the neuroscience floor at St. Vincent. She restocked laundry, made beds, filled water pitchers, and brought snacks for patients. Beth fully utilized an undeniable perk of using a wheelchair: carrying items hands-free on her lap. She balanced heavier items on her lap by holding them in place with her chin as she wheeled forward. Next destination (and highlight!) of a non-stop summer: Columbus, Ohio! |
Cindy KolbeA mom with a story Follow my
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