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!
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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! 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. Next: Oregon! (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! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
My last weeks in Cambridge as a personal care assistant and Harvard Coop employee ended with easy goodbyes. I loaded the car—twice—with Beth’s backup wheelchair, single futon, lift chair, floor lamp, refrigerator and microwave unit, and more. I labeled everything and pushed my limits by moving the items by myself to the basement storage room at the upperclass house (dorm) where she would live in the fall. Everything hurt after. I scribed for the student with cerebral palsy for the last time as Beth finished her final exams and swam her last practice at Blodgett until September. We watched colorful dragon boats race on the Charles River before I packed the car for the long drive to Ohio. I couldn’t wait to be back home for the summer and planned to appreciate every minute. The upcoming school year, John and I would have an empty nest in Tiffin with Beth at Harvard, Ben in Columbus, and Maria graduating early in December to work in Boston near her sister. I wanted my kids to find their own way in life, but at the same time, I wished they could live with me forever. Feeling sorry for myself sparked a radical idea: moving to the Boston area if John retired in two years, after 30 years of teaching in Ohio. Maybe. Summer vacation officially started with an additional five-hour drive to Chicago for the wedding of Rakhi’s brother. The short drive seemed easy after the trek from Boston. I loved our road trips in Beth’s blue car with CDs and sing alongs. At one of the wedding events, I wore a long blue dress with a tunic top to a beautiful ceremony. At the evening garba, Beth danced in a short sequined top that bared her midriff above a matching ankle-length skirt, a gift made in India from Rakhi’s parents. We found out at the garba that a woman with a bare midriff meant she was looking for love. I never tired of adding to Beth’s contagious laughter. Back in Tiffin, Beth reunited with her best friends, Ellen and Lizzy, not knowing it would be one of their last summers together. Maria gave Beth a special gift, a beautiful sunflower quilted wall hanging that she sewed for a college class on women’s traditions. Last spring, John attended presentations at Heidelberg when the students spoke about their quilts. I wished I could have heard Maria talk about her sister’s favorite flower and the passion for life they shared. When I lived in Cambridge, I also missed hearing my oldest daughter sing at Heidelberg choir concerts. I wouldn’t miss any more of her solos. Seneca Aquatic Klub practices filled Beth’s calendar for her fourth swimming summer. Peggy showed us an underwater video from the previous summer with sloppy strokes. A recent one with smoother movements reinforced Beth’s belief that mastering the forward freestyle stroke was doable. Two teammates lifted her in and out of the pool as they had for high school practices. One morning, they carried her out to the diving board—under protest. Her attempt to enter the water gracefully ended in a belly flop, but she didn’t lose any sleep over her lack of diving skills. Next: Norway! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The spring sunshine brightened my view. I ran low on my anti-depressant with no refills, so I gradually discontinued the Zoloft and packed for a long weekend abroad. Beth headed back to Boston's Logan airport in May for her first overseas trip, a month after the Michigan meet. She accepted her invitation to the inaugural Paralympic World Cup in Manchester, England. British Paralympics paid the travel expenses for every athlete and coach attending from around the world, with funds from their national lottery. Peggy and I flew to Manchester on our own dimes, though she had started the process to become a U.S. Paralympics coach. I had been to England during my summer as an exchange student in Norway, but only in the London area. We explored Manchester’s stunning town square and massive historic buildings. The large pool complex held teams and spectators from every corner of the world. The World Cup was Beth’s first official meet as a member of Team USA. She didn’t request a personal care assistant for the trip because she didn’t require one, but I missed being with her in the hotel, the locker room, and on deck. Like others on the USA team, even those with better-working hands and arms, Beth squeezed in and out of a new tight leg suit with help from team coaches who called themselves “hiney hikers.” Beth’s hotel bed in Manchester was too high for her to get in it independently. She asked a teammate to remove her twin mattress and prop it along a wall. She slept on the hard box springs to avoid asking for help to get into bed. I didn’t find out until after the trip. It felt strange for Peggy and me to be spectators in the upper stands instead of in the middle of things on deck. She couldn’t sit still and often watched the meet standing up. Beth competed in the 100 freestyle in a mixed heat with swimmers in higher classifications. She reset her American Record in the event, swimming her fastest stroke, the back, during freestyle races. For Beth’s big race, the 50-meter backstroke, Peggy and I watched S3 swimmers wheel or walk to the starting blocks while the announcer introduced them to the overflowing crowd. A wide range of disability was apparent, including cerebral palsy, spinal cord injury, and limb differences. In a perfect world, they all had identical functional abilities. Beth held the world ranking of eighth in the 50 back. She took her place in a full heat of S3 female swimmers for the first time. A rare race with true competitors. After the buzzer sounded, she could see the swimmer in the next lane moving at a similar pace —also a first for Beth. I stood up and cheered as she picked up her pace, touching the wall in time to earn an unexpected third place bronze medal. After the race, officials “tagged” Beth for random drug testing. They followed her to the cool down pool and then to the staging area to be presented with her medal. Kiko, a friendly U.S. Paralympics coach, stayed with her and other teammates being tested, while the rest of the team returned to the hotel. Beth’s times moved her up in the IPC World Rankings to sixth in the 50 backstroke and seventh in both the 50 and 100 freestyle. The last evening at the first World Cup, Team USA celebrated the meet with a pub dinner of fish, chips, and mushy peas. Beth’s food tastes broadened, leaving behind her childhood staple of macaroni and cheese for late night pad Thai with tofu and veggies on Mass Ave, spinach salads in the freshman dining hall, and sushi in Harvard Square. Back home, Peggy shared her thoughts on the World Cup with a reporter. “It’s quite an accomplishment to see Beth take her swimming to such a high level in such a short period of time and know that she is still improving. This was the first international meet for Beth to swim in a whole heat of like disability classifications from all over the world. To place third and earn a Bronze medal is just incredible. There is a big horizon ahead for Beth.” Next: My Alarming New Low! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
In late April, Beth and I flew to Michigan for the Second Annual Disability Open. Her goal was to officially get back on the U.S. Paralympics Swimming National Team, since she had temporarily lost that status by declining her spot for the Greece Paralympics. “I heard stories from the other swimmers,” Beth said, “but I don’t have any regrets. I knew I’d have more chances.” She happily reunited with Coach Ewald and other friends on the pool deck. Her fan club watched. My parents, John, Ben, and his girlfriend traveled from Ohio to join me in the upper stands. (Maria had to work that weekend.) Everyone in our family showed an interest in Beth’s swimming, but Ben shared the understanding of intricate details of classification, competitors, rankings, and records with Beth and me. I fervently hoped Beth regained National Team status, but not to be pushy or to brag. I simply wanted what she wanted, whatever was important to her. Wearing a Harvard swim cap, Beth swam the 50 butterfly in record time, but was disqualified. International Paralympic rules required air space between the elbow and the water for the butterfly, which she could do, but not every stroke. After the 100 freestyle, she touched the wall just tenths of a second under the needed qualifying time for the National Team. And reset her American Record. Beth beamed when she saw the time on the scoreboard, then waved at us in the stands while we hooted and hollered. Despite the chilly spring day, the post-meet tradition of ice cream carried on at a Dairy Queen, ending with long goodbye hugs with Peggy and the rest of Beth’s fan club. I wished John could return to Massachusetts with me, but he had to teach until the end of the school year in our Ohio hometown. Back in Cambridge, Beth signed up for the housing lottery with two friends. No personal care assistant. All of the freshmen living in Harvard Yard moved the next school year to one of the upperclass houses. The lottery worked a little differently for Beth since the only accessible options were in the Quad, the housing farthest from the main part of the campus. She would live in a dorm with multiple elevators. Newer elevators. Her dorm suite would have an accessible bathroom. A dining hall in the dorm added another advantage. I would be no longer needed in Massachusetts when Beth started her second year of college. I was proud of her and I fully appreciated her rare accomplishment of independence as a quad—but not the 700-mile separation approaching in the fall. Next: Beth’s First Overseas Trip! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Besides snow, Harvard presented other accessibility challenges. With massive historic buildings, wheelchair access often involved out-of-the-way back doors. Some required making prior arrangements for keys, key cards, or lifts. An unanticipated obstacle ruined a cold morning. While Beth’s roommate traveled, the only elevator in Thayer dorm broke down. She couldn’t find help to get down the steps in time for the shuttle to the pool. Frustrated, she called her coach for the first time about missing a team practice. When the elevator was fixed, it remained unreliable. Temporary fixes for the elevator varied in duration. Harvard’s maintenance director gave us his cell number and put a repair team on call. He explained that a new elevator required gutting the historical building—not an option. Unfortunately, replacement parts for the ancient elevator had to be specially made. Beth hated to ask for assistance. However, she loathed missing classes and practices more, so she placed the phone numbers for the maintenance director and floor proctor on speed dial. They usually responded quickly. Noah hadn’t gone to bed yet early one morning when he and the director carried Beth down two flights of dorm steps at 5:45 a.m. for swim practice. I helped with the stairs whenever I could. The day arrived when the elevator could no longer be fixed temporarily. The director offered to put Beth up in a nice hotel close to campus. She chose to stay put and arranged for help to get down and up the steps. The dorm elevator added ongoing stress. During that time, a relatively new elevator at the back of Annenberg came to a stop partway to the dining hall with only Beth inside. One of the servers heard her and stayed close by, talking to her for about 30 minutes until the elevator moved again. Over the weeklong semester break at the end of January, Beth and I boarded a crowded bus to visit New York City. A four-hour drive one way for a two-day visit. The Broadway musical Rent highlighted our trip. At the accessible entryway to the theatre, we waited to be seated near the actors' entrance. Recognizing one, Beth was star-struck when he greeted her with a smile and a hello. Drew Lachay, from the boy band 98 Degrees, played the role of Mark. The opening song introduced us to the beautiful concept of measuring our lives in love, through all 525,600 minutes in a year. We planned to taxi back to our hotel after the show. Beth wore unlined boots with no socks and a dress that bared her knees. Theater patrons quickly filled the taxis in the frigid night. Taxi drivers also tended to avoid people in wheelchairs, and Uber didn't exist yet. We ended up walking a mile to the hotel, stopping every few blocks at an open business to warm up. It was one of the rare times she let me push her wheelchair to protect her hands from the bitter cold. |
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