Beth’s second trip to the Paralympic World Cup in England fell conveniently during reading period, Harvard’s open study time before finals. I stayed home. Peggy flew to Manchester as a Team USA coach. Aware of Beth’s earlier solution for the high bed at the same hotel, Peggy placed the box springs along the wall and left the mattress to sleep on. Beth brought home a bronze international medal.
In Ohio, the two-story Tiffin home we bought in 1984 for $39,000 appraised 23 years later at $105,000. In the midst of the housing crisis, home sales had slowed nationally and even more in Tiffin because of factory closings. We listed the house for $99,000. On a lucky day, a young couple requested a second showing of our home. We told them we would accept an offer of $90,000.
The home where we raised our children sold.
An early closing date forced us to rent a Tiffin apartment for two months. I turned in my notice at the nursing home and sold our second work car. We left our old house and garden walkways on an emotional day. So many memories. I wish I had kept the seeds of the flowers we called 4 o’clocks. They thrived in the dirt of a front window well. Over decades, the colors blended into one-of-a-kind blooms, each flower unique.
At a tiny apartment across town, John and I carried a double mattress to the bedroom floor and a single bed on a metal frame for Beth in the living room. The only other furnishings: a TV, card table, and two matching chairs. And important things, like my African violets.
Beth’s sixth swimming summer began with my drive east to pick her up at Harvard and bring her to Tiffin for the last time.
She swam with SAK and Peggy at the outdoor pool and on her own at the YMCA. She researched her senior thesis. Always reading, Beth checked off more books on her top one hundred classics list. We both read Jane Austen books and watched movie renditions, always rating the books higher. She completed her Harry Potter collection with the seventh and last, “The Deathly Hallows.” The first 24 hours of sales set a new record with 11 million copies sold. She waited in a long line with Ellen and Lizzy to see the fifth Harry Potter movie, “The Order of the Phoenix.” A dinner in Sandusky with Laraine ended in a teary farewell, probably for the last time.
Beth started graduate school applications and made notes for admission essays.
“I have met many people with disabilities who are limited by inadequate health services. This stark reality has shifted my focus from a childhood desire to be a doctor to fighting for disability rights.”
Next: More Travels!
My efforts to anticipate and avoid problems failed during a Paralympic swim meet in Canada. I met Beth at the Montreal airport. She wasn’t a fan of flying but that didn’t stop her from getting on planes. Beth surprised people by traveling alone with a duffel bag on her lap and a big Harvard Swimming pack on the back of her chair.
I had no rental car reservation. The subway had been recommended, and it worked—if you could climb flights of steps. We decided on taxis instead. On the last morning, we rode through a heavy March snowfall to the swim meet.
One of Beth’s big wheels flattened during prelims, a first in seven years of air-filled tires. After her injury, I worried about many things, but a flat tire had been completely off my radar. Overly optimistic, we hoped a new inner tube in an odd size could be easily found at a local bike shop.
On a Sunday. During a snowstorm.
I left to save the day while Beth rested in our hotel room. I planned to pick her up with an inflated wheel in my hand before the last finals session. I hailed a taxi carrying the flat wheel and a list of bike shops; thankfully, Montreal had several. A friendly driver headed for the nearest one while I called others. Phone recordings said some were open though no one answered.
Beth called me in a panic when I left the third bike shop with the flat tire. She learned it was a big deal to miss a finals race at a championship meet, with paperwork required in advance. Time ticked away, and drivers acted as though they’d never seen snow before. Plows blocked roads and piled snow on parked cars.
Miraculously, the fourth bike shop had the right size inner tube. By the time they fixed the wheel, and I arrived back to the hotel, finals had already begun. The taxi driver waited while I ran up to our room with the wheel and flew back down with Beth who wore her swimsuit under sweats. Peggy called us from the pool. We might make it in time for her first race. A traffic jam tested our patience and dampened the beauty of the white wonderland.
Finally, I paid the driver way too much, and we rushed to the pool deck where Peggy waved frantically. Right next to a starting block, Peggy and I stripped Beth’s coat and sweats off in seconds and literally dropped her in the lane. Another quick moment, and the race began. Her hastily donned goggles came off and floated in the water behind her.
We laughed about it later, but it wasn’t funny at the time. ;-)
In hindsight, we should’ve borrowed a wheelchair from another swimmer for Beth to get to finals with Peggy. Friends on the team with prosthetic legs sometimes traveled with wheelchairs. I bought a set of foam-filled tires the next day--the only kind she’s used since!
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!
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!
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!
(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!
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
In Norway, we snapped pictures to add to our scrapbook at the Worlds End (Verdens Ende), a desolate spot on the water with many small, bare rock islands. The islands reminded me of stepping stones for a giant heading into the strait of Skaggerak and the North Sea.
The Worlds End looked exactly the same twenty-nine years ago, when I was as an exchange student.
In Denmark, we drove with Anne-Lisé past cows grazing on small strips of grass next to narrow rivers. We visited and stayed with Gretha and her daughter Belinda, who was an adorable little girl in blonde pigtails when I first met them in 1977. We saw the sights in beautiful Aalborg and spent lovely, relaxed evenings with friends before driving to Norre Vorupar on the coast. We carried Beth into small bathrooms where her wheelchair would not fit. One evening, Gretha treated us to dinner at a fancy restaurant on a North Sea beach. Our server and friends teased John and me about ordering only water—apparently a social sin! :-)
Back in Oslo, an airline called with unwelcome news. Our flight was moved up a day, so we boarded a plane after a heartfelt thank you and sad goodbyes with my second mom, Anne-Lisé.
Our layover in Paris turned into a fiasco.
First, the staff acted like they had never had a passenger with a wheelchair before. After we landed and the other passengers left, we waited for a clunky airport wheelchair, then waited longer for a strange cubicle on wheels that raised in the air to meet the back door of the airplane. The four of us reluctantly entered the cubicle, which carried us a long way to a terminal.
Second, we learned our flight to Detroit had been delayed to the next day and the airline would not pay for a hotel.
Third, we picked up our luggage and waited for Beth’s manual wheelchair to be returned to us. And waited. At the customer service desk, rude airline staff nonchalantly told us they couldn't find her wheelchair. No big deal? How could a wheelchair be lost? We moved Beth to a regular molded plastic chair since her back hurt in the airline wheelchair, but she still wasn’t comfortable. We had to keep asking the desk staff to check again, until they finally made a phone call. Or pretended to. Tired and hungry, we were not happy campers. Beth’s wheelchair was lost for two hours.
Fourth, we boarded a crowded airport shuttle to a hotel. On the way, the driver pulled over for an unscheduled stop just to smoke a cigarette, while all of us had to stay on the shuttle, packed in like sardines. The hotel charged outrageous prices. We overpaid for a tiny room with one bed and two of us slept on the floor.
When we arrived in Detroit, we brought with us a new appreciation for U.S. airports.
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Twenty-nine years had passed since my summer in Norway as an exchange student. My former host mom, Anne-Lisé, invited us to stay with her for two weeks in July. With a new job in Columbus, Ben missed our biggest family trip. The other four of us boarded a plane.
The rugged beauty of Norway’s fjords had not diminished since my first trip.
We stayed several days at Anne-Lisé’s rustic summer cottage in Tjome. There was no road that reached her land, so she drove the car on grass and a dirt path. Huge boulders dotted the view, the landscape untouched except for a small home now and then. The cottage had been built next to a massive rock that extended from the main entrance and served as a deck. For breakfast, Anne-Lisé served tubes of caviar and chunks of cheese with heavy thin bread and wide crackers. Delicious, except for the caviar.
Maria and Beth decided to swim in the Oslo fjord, a short distance from the cottage through woods.
It was a difficult trek with a wheelchair and one of the few times Beth didn’t complain about being pushed. Massive rocks met the water, with no beach. I positioned Beth’s chair the best I could and lowered her to the rocks. The cold water (64ºF, 18ºC) nixed her plans to swim. Instead, I shot a photo of the girls in shallow water and complied with Beth’s request to return to her wheelchair. I should say, I tried to comply.
Maria and I slipped on the wet rocks. Beth laughed. Then all three of us couldn’t stop laughing. When we tried again, we fell again. And a third time. Laughing and lifting never worked. Finally, Maria and I accomplished the task after catching our breath and planting our feet in a less slippery spot.
We teased Beth, blaming her for our new bruises.
In Oslo, the new Nobel Peace Center made a lasting impression, as well as Vigelandsparken, a beautiful sculpture park built on a stunning scale and depicting every stage of life. In 1976 at the same park, I sat next to the U.S. Ambassador at a formal ceremony to celebrate the U.S. Bicentennial on July 4. After he spoke, it was my turn. I stood at the microphone in a stars and stripes top and skirt. I read my prepared speech, and Anne-Lisé gave me flowers.
Twenty-nine years later, we toured the Edvard Munch art museum with my second mom, Anne-Lisé, and her lovely granddaughter, Christina. At an Oslo pub with fresh flowers on our table, my teenage daughters ordered long island iced teas, their first legal drinks.
Next: The World’s End and Denmark!
I'm a mom on a mission to share hope for those in crisis. My new memoir launches on April 9, 2019!
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