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!
Back at Harvard for the start of Beth’s junior year, I carried her chair and other items up from the basement storage room. I set up her dorm room before I drove back to Tiffin. She changed her concentration from biology to health care policy with the goal of attending law school. Beth told a reporter about her DC summer and why she changed her major.
“I really fell in love with the policy side of things. After the internship, there was an opening in Senator Kerry’s Boston office to work specifically on disability issues with one of his staffers. They invited me to do that. So, throughout my entire school year I worked in his Boston office. It’s completely different, because it’s much more focused on his constituents. But I really loved that, because you get to talk to people on an individual basis.”
Beth rode the T by herself from Harvard Square to the Senator’s office near the Massachusetts State House. One day a week, sometimes two. She stayed on the subway and passed the T stop closest to the Senator’s office to avoid a steep hill. She planned for extra time to wheel the additional distance back to the office, avoiding the inaccessible T stops. She signed up for text alerts to get advance notice when elevators broke down.
“When I answered phone calls, I recognized a desperation in their voices as they reached out to their Senator, who was all too often their last hope in solving their issues,” Beth said. “It was rewarding to resolve specific disability-related complaints, but some we could not help.”
She stayed in touch with Mary in the DC office and joined the Senator and staff for events, including a campaign rally at Boston’s Faneuil Hall for Deval Patrick, soon-to-be Governor of Massachusetts.
Coffee, Beth’s new habit, stoked long days of classes and homework, swim practice and meets, plus volunteering for KSNAP and Senator Kerry.
Beth’s new major allowed her to create and follow an individualized program. She selected classes relating to health care, a wide field of study including economics, regulations, inequalities, public opinion, politics, quality control, and buzzwords like adverse selection and moral hazard. She looked forward to classes at two graduate schools.
“I explored health care policy and disability issues with courses at Harvard’s Kennedy School and Law School.” They were her favorite classes.
Next: A Big Decision!
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!
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!
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.
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'm a mom on a mission to share hope for those in crisis. My new memoir launches on April 9, 2019!
Follow my once-