Beth's right elbow swelled and hurt for the first time. Initially, her doctor and the team’s athletic trainers recommended compression wraps and anti-inflammatory meds.
She never stopped swimming, feeling healthy and stronger than ever, except for the elbow.
The college competition season approached. One of Beth’s friends on the U.S. Paralympics National Team also swam on the Yale team and successfully fought to compete at all meets, home and away. In contrast, Beth appreciated the time she gained by not traveling with the team.
“The trips sounded exciting but staying back gave me more time for school work and volunteer activities,” Beth said. She sent swim workouts to the U.S. Paralympic National Team manager and reported her whereabouts to the United States Anti-Doping Agency for random drug-testing.
Little to no social activities. Yet.
Often the last to leave the varsity locker room after a practice, with her hair wet, she wheeled up the hill at the entrance to the sidewalk on North Harvard Street. She wheeled toward the Square to her classes. On frigid days, the hair below her hat freeze-dried. The curb cuts on the bridge over the Charles River had steep inclines, impossible in any kind of wheelchair. Unwilling to ask for help from one of the endless pedestrians, Beth wheeled in the street alongside the curb instead, sharing a lane with nonstop cars while drivers turned aggressively in front or behind her.
Across the river, Beth often stopped at Dunkin’ Donuts for a soy latte and a whole grain bagel with blueberry cream cheese. Peet’s Coffee also was a favorite a little farther down the street.
One morning at the Kennedy School of Government, she rode the elevator with Madeleine Albright, the first woman Secretary of State.
Beth’s largest class, Justice, attracted hundreds of students to Sanders, my favorite theatre. Dr. Michael Sandel led lively discussions on all aspects of justice that kept students engaged—and the public as well. Harvard aired Justice online, for free.
Next: Sisters in Cambridge!
Back home in Tiffin, Ohio, I accepted an activities job at the upscale Elmwood nursing home. Almost 30 years earlier, 19 and newly married, I worked as the first manager of Elmwood’s first group home in the nearby town of Clyde.
I worked five days a week on the Alzheimer’s unit, learning more than I wanted to know about the disease.
On the best days, we sang songs, told stories, made crafts, played games, walked together, and laughed. On the worst days, a sweet woman died in her bed or alarms blared when residents unable to walk thought they could. Or someone fell. Or a medical emergency required an ambulance.
Sirens always reminded me of the night of my car accident.
One November morning, Beth stopped at the dining hall for coffee on the way to a Harvard Women’s Swimming and Diving home meet. The cup slipped and scalding liquid spilled on her left thigh. She felt discomfort, but when she removed her leggings at Blodgett, she didn’t expect to see the small red hole in her thigh. Her coaches discussed the emergency room and asked a dermatologist friend in the stands to look at it. The doctor, a former college swimmer, cleaned and covered the third-degree burn, emphasizing the need to prevent infection. Wide scarring when it healed would be unavoidable. It surprised me that the dermatologist gave her permission for Beth to compete at the meet.
I heard about the burn the same day, but not the severity.
She neglected to disclose all the details. She left out the part about the burn exposing the bone. I assumed it wasn’t serious since the doctor and coaches allowed her to swim. She didn’t want me to worry. Nevertheless, I was alarmed when I saw the burn a few weeks later.
Skin problems healed slowly for quads, and infections? Dangerous.
We re-visited the issue of drink holders for her wheelchair, rejected in the past. Thankfully, Beth gave in this time.
Next: Elbow Woes!
My oldest daughter Maria stuck to her plan to relocate to Boston when she graduated from Heidelberg. She hustled with a heavy class load to finish a double major in three and a half years. Before long, two of our three children would be in Massachusetts.
John agreed with me that we could live there, too.
He knew how much I wanted to be with our kids. He started his thirtieth year of teaching in Tiffin, his last before retiring in Ohio. We planned to sell our house in the spring and move that summer. John decided he’d teach for a few more years in the Boston area because of the much higher cost of living there.
At Harvard, Beth swam six times a week her junior year, and rode the bus at 6 a.m. with her teammates who lived in the Quad.
She often arrived at Blodgett in sweatpants, with a swimsuit underneath that she’d pulled on before getting out of bed. The team stretched together on deck before getting in the water. Skipping practice? Not an option. When the rest of the team swam doubles, a second practice on the same day, Beth stayed with one.
Coaches added a snorkel to the modified swim paddles and floats in Beth’s equipment bag. The snorkel eliminated the breathing challenges of her forward strokes. During hour and a half workouts, she typically swam about a hundred laps of 25 yards each.
During peak times in her training cycles, workouts hit two hours and 3,000 yards, almost two miles.
“My undergrad was devoted to swimming and health policy,” Beth wrote. “It was a struggle sometimes to be independent and keep up with the work, but I grew a lot during that time. I learned how to make new friends, to manage my disability, and to advocate for myself—not to mention becoming a much stronger swimmer. I like to joke that I spend more time in the pool than I do in class. I love this pool!”
The locker room had a new plastic shower chair Beth finally requested. From a sitting position in her wheelchair, taking off a wet swimsuit in the varsity locker room required patience. I suggested suits one size bigger, but she liked them tight.
Resolve and repetition gradually made dressing in her wheelchair easier, from button down sweaters to the zipper on her skinny jeans.
Next: My New Job!
Over a long August weekend, John and I met Beth at the San Antonio airport for our first trip to Texas. Oppressive heat welcomed us. I bothered Beth with temperature checks and wondered who had the idea for a swim meet in Texas in August. Between prelims and finals of the U.S. Paralympics meet, I left a trail of sweat through the River Walk and the Alamo, monitoring Beth’s temperature often. John’s camera captured butterflies on bright flowers, thriving in the stifling heat.
Beth and the other National Team swimmers learned about lactate testing, an important element of competitive swimming.
Lactate increased in arm and leg muscles during races, a potential problem if the athlete had another event in the same session. A quick poke for a drop of blood right after her first race revealed Beth's lactate level. After she warmed down with leisurely laps, a coach tested her blood again. If her lactate level was not low enough, she swam slowly for a longer time. Through this process, repeated after other races, they determined the optimum warm down for each swimmer, so muscles would be at peak performance for the next race.
Beth’s swim times in San Antonio earned her a place on the World Championship team going to South Africa.
Unwilling to miss a month of college, she gave up her slot immediately to allow someone else to go in her place. However, the Beijing Paralympics would not be declined.
Her IPC World Rankings rose to fourth and fifth with the 100 and 200 freestyle.
As she finished her internship on Capitol Hill, Beth decided Washington, DC was her favorite big city. Losing the last remnants of her shyness, Beth accepted her first dates. She didn’t see her disability or her wheelchair as impediments to dating.
She thought about how her next years would revolve around finishing at Harvard and starting graduate school, so at her request, we sold her car to a Toledo friend who needed the hand controls.
I would always cherish our fun road trip memories in her little blue car.
Next: Career Change!
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!
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!
(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.
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Back home after our Norway trip, Beth bought the new Harry Potter book, The Half-Blood Prince. I didn’t need to wait long to read her copy. During a family trip to Columbus to see Ben, we watched Murderball, a documentary about the remarkable U.S. Paralympics quad rugby team that competed in Athens, Greece. Rugby was an aggressive sport with frequent injuries, and caught Beth’s interest when a friend invited her to use his special rugby wheelchair at a Columbus practice. Ben volunteered to pick her up off the court floor when she got knocked out of the chair. I loved to hear them laugh.
Coach Peggy vetoed Beth's plans to participate in a rugby practice, and also the sit skiing she wanted to try. Peggy reminded her that broken bones would derail her freestyle and Beijing goals. Beth technically could swim with a broken leg, with no cast, but the increased spasms would slow her down.
“Peggy is immensely caring,” Beth said, “and she thrived on the challenge of coaching me in a new way.”
In late July, I flew with Beth and Peggy to Portland, Oregon for a rare national meet at an outdoor pool. Swimming under the hot sun meant the few with quadriplegia contended with fevers, since their body temperatures couldn’t regulate normally.
Despite a rising body temperature, Beth earned American Records in the 200 free and 50 back. She would’ve added another in the 150 Individual Medley (IM) except for an uneven touch at the ending wall. A disqualification. Beth’s right hand bent into a fist more than the left, so Peggy started the paperwork to apply for an IPC exception.
In Portland, no other S3 women competed. This meant Beth couldn’t see swimmers on either side of her during races, since faster swimmers with higher-numbered classifications quickly moved out of her sight at the start. After a race, a reporter asked about her decision to give up the spot she earned for the Athens Paralympics.
“I’m definitely not going to miss out on China,” Beth said, “and have put myself on a three-year training schedule to qualify.”
Between swim sessions, we drove the Columbia River Scenic Highway to picturesque waterfalls, with Mount Hood in the distance. Beth and I recalled the view of Mount Rainier where her swimming journey started. We wondered where we would be if we hadn’t gone to Seattle—where Beth set big swimming goals, and where we saw the unusual billboard with the caption, “Quadriplegia at Harvard: A+.”
Next: Back to Cambridge for Year 2!
A mom with a story
to share about injuries that never heal and fortunate accidents. About guilt, disability, perspectives, and unexpected adventure.