 Beth’s day on the Senate floor during the stem cell debate included conversations with Senator Ted Kennedy and others. She loved every minute.
“If you ever need to be reminded of why it's morally right to lift the ban on stem cell research, just listen to Beth,” Senator John Kerry said. “She's more eloquent on this subject than any lobbyist or member of Congress.” When Senator Kerry spoke at the podium on the Senate floor to his colleagues, he introduced Beth and shared her story. He said she served as a “silent, powerful reminder of what is at stake here.” He also signed the paper copy of his speech for her to keep. Newspapers covered Beth’s story in Boston, Toledo, Tiffin, and Washington, DC. John collected them all. “As her Dad, I’m just intensely proud of her,” John said. “She’s a courageous young lady. How many 20-year-olds spent the day on the floor of the U.S. Senate tracking an issue that’s so important to them?” The Boston Globe printed my quote: “She’s not someone who is focused on the cure. She’s very much living her life today. We’re all hoping that stem cell research will offer her more options in the future, but in the meantime, she’s making the most of everything she has.” The Senate passed the stem cell bill with the support of Nancy Reagan and other Republicans. Regardless, President George W. Bush vetoed it the next day, benching the issue for three years until the next president ended the federal limits on stem cell research. Research undoubtedly paved the way for significant improvements in treating many conditions. However, a complete cure for the unlucky quads (like Beth) with a cut spinal cord in the neck AND an old injury? Not likely in my lifetime. We followed Laraine’s advice to not be the first in line for a cure. We knew people who paid a fortune for stem cell treatments in other countries, with little or no results. I thought it best that Beth’s heart wasn’t set on walking again. Even so, I hoped stem cells would make her life easier one day. Next: San Antonio!
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 Washington, DC was unfamiliar to Beth during her first extended stay as a summer intern. One day, she wheeled through an unfamiliar part of the city to meet a friend for dinner. Approaching an overpass by herself, armed only with her gift for minimizing obstacles, Beth increased her speed. She made it halfway up the hill to an even steeper incline. With no tilt guards to prevent the wheelchair from tipping backward, she leaned forward, turned the big wheels toward the road at a 90º angle, and stopped. She wore wheelchair gloves with her fingers exposed for a better grip.
If she reversed her course to go back down the hill, she’d burn her fingers on the big wheels trying to slow her speed and might lose control of the wheelchair. Going up the hill the rest of the way wasn’t a good option, especially without a “running” start. The overpass had two lanes of traffic in each direction, with no parking lane, bike path, or extra space for a car to pull over. Beth decided to go back down the hill and find a subway stop, when a young man stopped his car right in the lane next to her. He put on his flashers, and quickly pushed her up the hill. She realized he was deaf when she thanked him. After dinner, she avoided the overpass by taking the Metro home. Over the July 4th weekend, I drove eight hours with John and Maria from Ohio to Washington, DC, to visit Beth. I bought tickets for a play at the Kennedy Center for the first time. My girls and I loved the musical, Little Women. For the July 4th parade, we congregated by a curb on Constitution Avenue in blistering heat. Beth and I took a break in air conditioning at the Smithsonian American History Museum nearby. Many ethnic groups danced in vibrant costumes. Notably missing? The county fair royalty, tractors, and other farm equipment in Tiffin parades. Senator Kerry’s office manager arranged for Beth to sit next to him at the intern luncheon. Meeting him for the first time, my daughter asked him about the upcoming Senate vote to allow federal funding for new stem cell lines. “I asked him if I could be on the (Senate) floor with him,” Beth told The Boston Globe. “I hope that as the senators are voting they can see a face that reminds them of what they’re actually voting for.” “As a person in the disability community,” Beth continued, “I’ve met so many people whose main goal is just to get better, and stem cell research is their one opportunity to find a cure.” When Beth told me on the phone about her big ask, I realized that the shy, quiet girl she’d been before her injury had been left behind, for good. Senator Kerry not only agreed to her request, he decided to include Beth in his stem cell speech. He requested and received special permission for “privileges of the floor” so she could join him in the Senate on July 18th. Next: An Amazing Day!  As Beth wheeled forward, she paid attention to opportunities, many of them fortunate accidents of one kind or another. Through NYLN, she applied for a Congressional Intern Grant through the American Association of People with Disabilities (AAPD) and the Mitsubishi Electric America Foundation. The grant covered summer housing in Washington, DC, avoiding a huge expense. Next, she submitted intern applications to congressional offices.
“I was accepted into Senator John Kerry’s office first, so I jumped on that,” Beth said. “I was so excited because I respect him.” As summer began, I shopped with her for dress clothes and a professional-looking bag for the back of her wheelchair. I helped Beth move into an accessible dorm at George Washington University. The AAPD interns shared dorm suites on the same floor. Beth toured museums and monuments with her two roommates. She connected with the other interns as well as the hustle of big city life. “It was a life-changing experience. The disability community is so active in DC.” The Metro subway, newer than Boston’s T, carried Beth to Capitol Hill every weekday. She reluctantly conceded to the occasional push from strangers as she wheeled up the hill from the subway to the Capitol, especially on wet sidewalks. She worked on disability and health care issues at a desk right next to the Senator’s friendly office manager Mary. "We had installed handicapped door openers and Beth never used them," Mary said. "She has an unbelievable attitude and is sweet as can be. Nothing will stop her.” It also was Beth’s fifth swimming summer: still training year round on the US Paralympic National Swim Team and with the Harvard Women’s Swimming and Diving team through the fall/winter seasons. Beth frequented a crowded YMCA pool in DC after work. One evening on the way back to the GW dorm in pouring rain, she bypassed the subway elevator she needed because of a too-friendly homeless man. Beth wheeled several more blocks in the storm to the next Metro stop. Next: A BIG Ask!  I have exciting news to share: I signed a publishing contract for my memoir, Struggling with Serendipity, with a traditional publisher (not self-publishing)! I wanted my awesome blog followers to be among the first to know, before I post the news on Facebook and Twitter. Thanks so much for your support! The next segment in my story follows.
During John’s spring break, we drove twelve hours from Tiffin, Ohio to Cambridge, Massachusetts, taking Route 90 most of the way. It was worth it to spend a few days with Beth. A decade earlier, the one-hour drive from Tiffin to Vermilion seemed long, but no more. I bought tickets for our first Red Sox game at Fenway Park with John and Beth. The huge crowd at the stadium an hour before the game surprised me. We lined up by the field to meet some of the players. Many lingered to talk to the smiling college student in a wheelchair with the navy blue Red Sox cap. The stadium had old-fashioned charm. The homerun fence was painted bright green: the green monster. With every seat in the stadium taken, many others paid to stand to watch the game. The enthusiastic, rowdy crowd reacted to every play, something I’d never seen before. My first experience with intense Boston sports fans, but not my last. Bostonians are known for taking their professional sports teams seriously, a fact supported by many winning teams. We weren’t prepared for the cool weather, so I signed up for a credit card to get a free Red Sox blanket. I wrapped it around my daughter’s shoulders (and later cancelled the card). It was parent’s week at Harvard, so John and I visited Beth’s class on Ethics, Biotechnology, and the Future of Human Nature. Dr. James Watson, the former head of the Human Genome Project who discovered the structure of DNA with Dr. Francis Crick, was the guest speaker that day. His controversial affinity for eugenics created a lively discussion with the class. eugenics |yo͞oˈjeniks| the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics. Developed largely by Francis Galton as a method of improving the human race, it fell into disfavor only after the perversion of its doctrines by the Nazis. Dr. Watson encouraged the Harvard students to have many children. Beth joined the class debate on the potential of stem cells and the controversy over discarded embryos for research. Though never focused on a cure for her disability, she supported medical research. An upcoming vote in Congress in the summer of 2006 heated up the debate across the country over federal funding for stem cell research. We didn't know that Beth would be in the middle of it. Next: A Life-Changing Experience! As a new year began, I said goodbye to everyone at the group home and gratefully turned in my keys. I gave myself the gift of time to live in the moment, connect with loved ones, and take better care of myself. I aimed for the lower headache level I had before the manager job. A few weeks later, I was invited to a birthday party at the group home. It was good to see the residents again, but it also was nice to leave, with no responsibility for their lives. Not long after, the resident at the group home with the feeding tube passed away and I attended his funeral. I cried during his sister’s eulogy as she described his joyful greeting when she visited him, something I had the privilege to witness. From our home in Ohio, I kept in touch with Beth while she finished her first official season with the Harvard Women’s Swimming and Diving (HWSD) team. Harvard was famous for extraordinary professional connections. Beth found that to be true, but she appreciated other associations as well. For her twentieth birthday in April, the college’s shuttle bus drivers pitched in to surprise her with a bouquet of flowers. Even at 6 a.m. on the way to the pool, Beth conversed pleasantly with the drivers and always thanked them. She became friends with the bus dispatcher, Bonnie, who also used a wheelchair. At the dispatcher’s request, Beth spoke at two Boston schools. Bonnie attended HWSD home meets with her young daughters, and the girls asked Beth to autograph their meet programs. In the spring, she missed college classes for a week to fly to Antwerp, Belgium with the U.S. Paralympics National Team. She earned four first-place finishes. Her hometown coach traveled with the team as a new U.S. Paralympics coach. “Coach Peggy has helped me get better with almost every meet,” Beth said. ”She’s been with me every step of the way.” When a riot broke out in Antwerp, the coaches rushed to gather up the sightseeing swimmers. Everyone was fine. Some even found inexpensive treasures in the diamond capital of the world. My daughter’s only purchase was a gift for her sister Maria, a ring with a small diamond, similar to the HOPE ring. Beth had worn hers every day since her injury. Engraved with the word HOPE, Beth’s ring looked exactly like the ones her best friends owned. The rings were made after the car accident six years before, and continued to be a meaningful reminder of the love of good friends. Next: First Time at Fenway!   One of the few perks of being a group home manager was making the work schedule. I set up everything at work so I could be off for a long weekend in early December. Beth made her way to Boston’s Logan airport on her own. She traveled with a duffel on her lap and a full backpack on her wheelchair handles, and rode in an accessible taxi to the big airport. She stayed in her manual wheelchair until the plane boarded, when she moved to a small aisle chair to access her seat on the plane. Her wheelchair was tagged and put underneath with the luggage. She kept her duffel and backpack with her on the plane to avoid baggage claim later. After the landing, she was always the last passenger to deboard.
Beth was stuck on the plane until someone brought an aisle chair to carry her back to her own wheelchair. I flew out of Detroit and met Beth at the Minneapolis/St. Paul International Airport. It was wonderful to reconnect with Beth since we had been separated for months, for the first time. I drove a rental car to our familiar hotel across from the university pool complex. I had a cell phone, but no smart phone or GPS, so I had a routine for swim trips. I printed Google maps to navigate around a new city. By the time the two or three day swim meet in a strange city ended, I had just started to gain my bearings. In Minneapolis, I could relax, since I knew where to go from previous swim meets there. I had a good sense of direction. Ever since I grew up a few blocks from Lake Erie in Lorain, Ohio, I could usually find north, to the water, from different places around the state. My lake sense, my true north, didn’t work in other regions, unfortunately. However, my real true north was my family. The beautiful pool at the University of Minnesota bumped down to second on Beth’s list of favorite pools after Harvard’s Blodgett. She achieved an unexpected milestone at the winter meet: a PanAmerican Record in the 100-meter backstroke. She also added a brand new American Record in the 150 IM (backstroke, breast, and free), and reached an amazing fourth place in the IPC World Rankings in the 200 freestyle! If only the 200 free was an official event for her S3 disability classification. With an eye on the 2008 Beijing Paralympics, we hoped it would include at least one longer S3 event. Beth set and reset American Records on the Harvard Women’s Swim Team and the U.S. Paralympics National Team, working toward the perfect freestyle, the ultimate 50-meter freestyle record, and Beijing. Next: Moving On! I loved being home in Ohio, but the thought of Beth in Massachusetts made me sad, even though I knew she could handle living independently with her disability. I missed her. We had been a team for four years. I hit a snag with an incompetent clerk and a new prescription for her medical supplies. With a fast-dwindling supply, I called the company again. I made the effort to be nice—at least the first several calls. Then, I asked to speak to the clerk’s supervisor and she refused. I lost my temper and started over with another supply company, finally arranging an overnight delivery to Beth at our expense at the last minute. My sadness amplified the normal day-to-day stress of my job. With elevated headache pain, I had trouble sleeping at the group home. I barreled through more weeks with unpaid overtime hours. Often on the verge of tears, I talked to John and let him convince me the stress of the manager job wasn't worth the money. Looking back, I could have ridden it out. Holidays were always the hardest time of the year to staff group homes. So instead of quitting my manager job in November, before Thanksgiving and Christmas, I decided to be considerate of the residents and other staff by leaving early in the New Year, almost three months away. I turned in my notice, relieved the end was in sight, and focused on setting things in order for the next manager. I talked to Beth on the phone after she finished a 2,400-yard workout in one practice: 96 lengths in the 25-yard pool, almost a mile and a half. Swimming that distance had not been possible a year before. As college competitions began, Beth would compete at all home meets at Blodgett pool as an official member of the Harvard Women’s Swimming and Diving (HWSD) team. Always too-busy, she appreciated the extra time she would gain by not traveling to away meets with the team. I wished I could have been there for the first home meet of the season in mid-November. Beth dropped fifteen seconds in the 100 free compared to her first Harvard meet ten months before! And reset two of her short course American Records. “She's probably one of the easiest people to coach in the sense that she always has a smile on her face, she's got a great positive attitude, and she's willing to try anything,” HWSD Coach Morawski said. “And she just kept getting faster and faster.” “For her to make that commitment to coach me and, this year I’m on the roster, is really important,” Beth said. “It’s been great. I love it!” Next: Together in Minneapolis!   My first day as manager of a Tiffin, Ohio group home, I trained to administer meals to a resident with a feeding tube, followed by me training other staff. I liked the four men who lived at the home, and knew two of them from when I worked at the local institution. I worked 24-hour shifts, 3pm to 3pm, often three in a row. It simplified staffing the overnight hours, but challenged me, mentally and physically. Sleeping well at the group home rarely happened. I scrambled to get up to speed on preferences, goals, routines, behavior plans, staff scheduling, meal planning, grocery shopping, outings, medications, paperwork, and new state requirements. On my days off, I was on call.
The day-to-day responsibility for the health and welfare of four men was daunting. The men attended the county workshop for adults with developmental disabilities on weekdays. Ideally, that time would be used for administrative planning and paperwork. Instead, since the residents had multiple health issues, weekdays often included taking one of them to a doctor’s appointment. I learned complicated medication regimens, as well as scheduling regular appointments, ordering refills, and making sure all staff documented every small thing, every day, in the correct way. I often drove to the group home on my days off for at least a few hours, just to keep up. My agency's new quality control supervisor visited one weekday morning after the men boarded the workshop bus; she had been the manager before me of the same home. She pointed out missing papers in the resident binders, which I was aware of. I regret not being more assertive. I wish I’d spoken up and showed her my long to-do list that included the missing items. Papers she neglected to obtain as the previous manager. Instead, I stewed. Next, my agency’s director made a counterproductive decision about a resident’s behavior plan by caving in to pressure from a resident’s family. I typed up evidence to support a better approach, to avoid dependence on a walker he didn’t need. I met with the director to plead his case, to no avail. Later that day, the same resident threw a tantrum near midnight. Following the new behavior plan, I had to encourage him to use the walker by his bed on the way to the bathroom. He didn’t need one. The ill-advised plan guaranteed more acting out, increased dependency, and needless frustration all around. When his loud yelling finally ended, I poked my head into the other bedrooms to reassure and quietly tell the other residents everything was okay. Good intentions, bad outcome. The youngest resident thought my intrusion meant it was time to get up, so he jumped out of bed and started his morning routine. My attempts to explain and redirect irritated him. Nonverbal, he insisted on changing clothes and sat at the kitchen table in the dark. I tried to reason with him, saying it wasn’t time for breakfast. Agitated, he tried to tip over the table and would have succeeded, except the home had an unusually huge and heavy one. When he calmed down a bit, I brought him a bowl of his favorite cereal with milk. He finished and sat in his rocking chair in the living room, still angry. I kept him company while I wrote out the required incident reports. Next: A Difficult Decision!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
As Beth’s sophomore year at Harvard began, we lived far apart for the first time. I bridged the 725 miles between Cambridge, Massachusetts and Tiffin, Ohio with phone calls, emails, and care packages. I also tried to help from a distance, to free up at least a little of Beth’s time for more important things, even though we both knew she could do everything she needed to by herself. I made travel plans for upcoming Paralympic swim meets. I responded to requests for details for newspaper articles and updated her resume for a reporter. I started a Challenged Athletes travel grant application for her and she finished it, adding her personal goals and the essay. I ordered medical supplies and wheel bearings, When she needed a new bag for the back of the wheelchair, I researched options, emailed her the best ones, and bought the one she selected. Beth took over repairs for her wheelchair, scheduling a service to come to her dorm only after the intermittent catching of one wheel progressed to a consistent and frustrating obstacle. Her dirty laundry piled up until she couldn’t find clean clothes to wear. Her priorities filled her days: swim training, classes, homework, volunteering, mentoring—and sleep. Grateful to be home, I reconnected with the rest of my family. John and I visited Ben in Columbus. John taught 3rd graders while Maria attended Heidelberg College full-time, worked at a video store, and led college tours, in addition to babysitting. She sang in the college choir and show choir. Maria also solidified her plan to move to the Boston area after she graduated early, in December of the following year. She had a double major in elementary education and special ed. Always busy, she wasn’t home much except to sleep, but we found times to meet at Taco Bell to catch up over burritos and sodas. I loved my suddenly wide-open life, but I also felt the need to get a job to help with finances, even though John never pushed me to work outside the home. Without a college degree and with little opportunity in our small town, I had few options. Any minimum wage job would limit me to a very low income. I thought about working at the Tiffin Center again, a state job and my highest wage option. However, John might retire after the next school year, which meant we might relocate. It wasn’t fair to the residents to purposely work at the center for a short time. Plus, the thought of starting over again in direct care in the most difficult module was daunting. Working at a group home could be difficult, too, but seemed a bit easier and more flexible than the Tiffin Center. I decided to bite the bullet and manage another group home for the same agency I worked for earlier. Before accepting, I toured the Tiffin home, a modern duplex in good condition. The physical environment was a big improvement over the dilapidated house I had managed before. I said yes. I wish I had said no.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
As Beth’s second year of college began, I helped her move into Pforzheimer House in the Quad where she’d live for the next three years. The irony of a quad (quadriplegic) living in the Quad did not escape us. My trek to the basement storage room to uncover her belongings proved dangerous. A few months before, I could reach everything in the room. Since then, students packed the entire room to the ceiling. I climbed shaky heaps and shifted furniture. A student helped me grab the heavy lift chair off the floor and over more piles. I was lucky to recover Beth’s things undamaged. In her second floor dorm room, I hung Maria’s sunflower quilt on the wall from an old-fashioned picture rail molding. I stocked Beth’s mini fridge and bought boxes of Cheez-its. She shared a three bedroom, one bath suite with two quiet friends, both future doctors with pre-med majors. They studied most of the time, like she did. I slept on her futon for two nights until a sad drive transported me away from Beth. I should have been grateful that she no longer needed me close by, but the separation hurt. If I lived alone near Harvard for another school year and worked three jobs, sharing a dingy apartment would not be fun. Even so, I wished I could be in two places at once. With no assistant or mom down the street, Beth selected biology as her major, a concentration in Harvard-speak, and spent part of her days in the science labs with ongoing physical challenges with the equipment. She usually chose to wheel the mile to and from her labs and classes. She led conference calls for the National Youth Leadership Network, in addition to mentoring. Every Friday, she rode the subway into Boston. “I directed a volunteer program that mentored students in special education classrooms in Boston Public,” Beth said. She also expanded the program to a second school. “We visited classrooms every Friday and took the students on field trips.” Beth depended on the early morning shuttle to get to swim practice, with over two miles between her dorm and the pool. She operated the pool’s chair lift independently to get in and out of the water. It was her first year on the roster of the Harvard Women's Swimming and Diving team. She entered the locked varsity locker room by pressing numbers on a keypad. Easy, compared to handling the heavy doors of the building. She found signs and little gifts at her assigned locker from her secret sis. One morning, she had a new adhesive hook near her locker for her towel, since she couldn’t reach the high hooks. She no longer had to leave her towel at the bottom of her locker. Strong team bonds formed a community that depended on each other. “I made amazing friendships,” Beth said. She joined the rest of the team for scheduled workouts in a weight room. She knew what to do. Coach Peggy had created a personalized workout for her on laminated flip cards. Beth figured out how to hold traditional weights with uncooperative hands, and used stretch cords with loops for handles and heavy medicine balls. The team often swam after the weight room. Nothing if not persistent, Beth put on and positioned her swim cap, by herself. . . . After three years of trying and failing to achieve the task. |
Cindy KolbeA mom with a story
to share about injuries that never heal and fortunate accidents. About guilt, disability, perspectives, and unexpected adventure. Follow my
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