 The following day, I picked up Beth and Peggy again in a taxi. We met Brittany at Wangfuying, Beijing’s most famous shopping area. We stopped first for Starbucks coffee and tea. In the open-air market, we dared each other to eat roasted scorpions and seahorses.
No one accepted that challenge. ;-) Next, we made our way to my favorite place in Beijing. Near a magnificent temple, Brittany filmed a video of Beth navigating a ridiculously steep ramp with help. Brittany also practiced her Mandarin with friendly locals at the Temple of Heaven and answered their questions about her friend’s injury and swimming. It made me happy that Beth loved the serene park as much as I did. Under the shade of gorgeous old trees, I drew Beth into a hug and smiled as she patted my back. A perfect moment. Finally free, guilt no longer clouded my view. With eyes wide open, a breathtakingly beautiful world surrounded me—not in spite of Beth’s injury but because of it. Life wasn’t just good, it was better than before the accident. Among the lucky ones, we gained a deeper appreciation of the connections that made our lives meaningful. I shared her smile as we left the canopy of ancient trees and moved into the sunshine. “I could have spent all day exploring there,” Beth wrote, “but we left for lunch at a Peking Duck restaurant where I was peer-pressured into eating duck brain. It tastes like chicken, but I almost gagged from the texture.” The most honored guests traditionally received the brain of the duck, a delicacy. When pickled sea cucumbers followed, marine animals known for their leathery skin, Beth declined. Brittany filmed another video at the restaurant of a quad learning to use chopsticks. With no storm and no taxi problems, the day passed too quickly. Time for the Paralympics Closing Ceremony . . .
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 My daughter Beth’s last race as a member of Team USA was at the Beijing Paralympics, in the same Water Cube where Michael Phelps earned eight gold medals. Beth dropped three seconds off her previous best time in the 50 free to set a new American Record at 1:10:55, even faster than I had hoped.
The top S3 women in the world clocked in at finals from 0:57 to 1:18. At this elite level of competition, the broad variation of 21 seconds starkly contrasted to other finals races at the Paralympics where times varied by seconds or fractions of seconds. The lower-numbered classifications, like Beth’s, tended to include a wide range of function, compared to higher-numbered classifications with specific criteria that more effectively leveled the playing field. I admired how Beth and Peggy graciously accepted the inequities and aimed for achieving her ultimate American Record. “I was so psyched to see Beth at this level of competition,” Brittany said. “I knew how seriously she took swimming, but I didn't have a sense of the enormity of her accomplishment until I was in the Water Cube, donning my handmade 'Go Beth' T-shirt, screaming as she tore down the lane. Watching her swim, I was so proud of her, thinking about how insane it was that one of my best friends is fifth in the world in swimming!” Beth celebrated the accomplishment, happy with her three-second drop and new American Record, as well as her jump in the world rankings from 10th to fifth. Peggy and Beth continued with their post-meet ice cream tradition, though their only choice was the soft serve at McDonalds in the Athlete Village. U.S. Paralympics Swimming won the official gold medal count, with lifetime bests in over 90 percent of their swims despite tough competition from China, Great Britain, and Australia. When the last finals race at the Water Cube ended, USA swimmers had two days for sightseeing in Beijing, a sprawling city of over 6,000 square miles. Next week: Look for my 3rd Serendipity Newsletter! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) My main reason to live off-campus in Cambridge? To be available for any kind of transition support. To make sure Beth was okay. We agreed I’d have a lot of free time, so I stressed about where to apply for a job. Beth asked me to go with her the first time she swam at Harvard's Blodgett pool. She didn't know what obstacles she might encounter. I saw many challenges. The walk over the Charles River on the Anderson Memorial bridge was impossible in any kind of wheelchair because of the very high and steep curb cuts. Beth pointed out that she could wheel in the street when she was by herself, even though aggressive drivers filled the narrow lanes and turned over crosswalks. She also could avoid the bridge by calling ahead for an accessible shuttle to drop her off at the sidewalk in front of the pool. From the sidewalk to the building entrance: a significant downward slope. Heavy doors to open. Crowded lanes during the open swim. A pool chair lift was temporarily out of service. In the locker room, Beth tried to put on a swim cap, as always. She could get it mostly on, but when it bunched at the top, she pulled it off and handed it to me. I lowered her from the wheelchair to the pool deck and set her mesh equipment bag next to her with her printed workout from Peggy and goggles. I retreated to the stands to watch her swim. She stopped at times to put on hand paddles or a tempo trainer from the mesh bag, or to move for another swimmer in the lane. It wasn't easy sharing a lane with strangers, and she finished the workout early after a half hour. The corners of the pool included a much higher side, so she couldn't get herself out the usual way. Instead, she put her back to the side edge, put both hands up behind her, and lifted herself out of the pool after several tries to sit on the deck. I checked with Beth and she reluctantly agreed for me to ask one of the life guards to lift her knees while I lifted her upper body to her wheelchair. In the locker room, no shower bench meant showering in her chair (minus the cushion), not a good thing for wheel bearings. Changing clothes in her wheelchair created the biggest challenge. One task she had mastered in high school was sliding on sweatpants over a wet suit, but at college, she would have classes after swim practice some days. I sat nearby as she pulled off the wet suit inch by inch, dried off, and tackled underwear and jeans. She let me help when the jeans bunched up under her and she needed to give her arms a break. When we left the building, the slope back up to the sidewalk was not gradual. She could wheel it very slowly, but that day she let me help with my hand on one of the push handles. At Bertucci's in the square, Beth ordered a margherita pizza and talked about the pool, happy that swimming at Blodgett was doable on her own. I returned her smile, grateful for her extraordinary perspective.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The morning after Beth’s exciting Greece news, we arrived at the Minneapolis airport early. John couldn’t miss more school, so he flew home to Ohio. Beth and I landed in Boston for Harvard’s weekend for admitted students. We found our way to information sessions, welcoming with every detail. Enclosed within a tall wrought iron fence, Harvard Yard housed freshmen dorms, classroom buildings, libraries, grand offices, and the John Harvard statue, all brimming with historical significance. Under a canopy of ancient trees, tourists speaking many languages flocked to the statue, rubbing a buckled shoe for luck. Over in Harvard Square, to the south and east of the Yard, street musicians performed amid shops and restaurants. People had gathered there since 1630. We bought chocolate treats at Finale. We browsed at Mint Julep, a boutique destined to become Beth's favorite dress shop. The Square embodied interesting contrasts: a tattooed teenager with many piercings, a veiled tourist with only her eyes showing, an elderly Asian gentleman playing a simple string instrument, a man dressed for a yacht ride, a homeless woman with long dreadlocks, and a rich woman in diamonds and furs. Beth and I were a world away from our small Ohio town. We met with Harvard‘s director of disability services. She offered Beth accessible housing in a freshman dorm with a two-bedroom unit, the second one for a personal care assistant. Beth agreed to the plan for her first year and would return to Cambridge in the summer to interview prospects for the assistant position. Ohio Rehabilitation Services wouldn’t help with Beth’s tuition for an out-of-state college. However, Harvard unveiled a new financial aid initiative to cover all college costs for students from low-income families. John and I both worked full-time and he had additional income from summer school, all reported on our tax forms, so the fact that we qualified surprised us. Our combined salaries met their criteria for low-income families. As a result, our money worries about Beth’s college expenses ended unexpectedly. We felt incredibly thankful and fortunate—despite being poor by Harvard’s standards. Next: Overseas Travel Plans!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) I had stayed through my daughter Beth’s first high school swim team practice, in case she needed my help. She didn't. So for all the others, John or I dropped her off at the entrance of the YMCA, left, and returned later in the evening to wait for her after practice. Changing in her wheelchair on her own was time-consuming at first, even loose sweatpants over a wet swimsuit. She usually wheeled out the YMCA door into a nearly empty parking lot. Officials with the U.S. Anti-Doping Agency interrupted a high school practice for one of Beth’s random drug tests, her first outside of a national meet. Her teammates were impressed. We sent in another quarterly report for USADA with her location at all times, as she would for the next five years as a member of the U.S. Paralympics Swimming National Team. Letters arrived periodically to verify she passed the tests. I submitted the extra paperwork and doctor signatures to allow for her one prescription, advair, to keep her asthma symptoms in check. Routine tests in Toledo showed small, but steady gains in lung capacity. “It pushes her to train with us, and it pushes the other kids because it’s taught them that all things are possible,” Coach Peggy said. Peggy met Beth for an additional practice at the YMCA most weeks, so we rarely made it to the Toledo pool. I arranged my work hours at the group home to be available for swim meets. The once-a-year USA Swimming Disability Championships evolved into Can-Am Paralympic meets twice a year, one in the U.S. and one in Canada. The United States also hosted a special Trials meet every four years before the Paralympics. At a Can-Am meet in Indianapolis in November, my daughter earned two American Records in the 100 and 200 freestyle. “Three years ago, the only way I could swim was with two physical therapists holding me in the water,” Beth said. “Since then, swimming has become a significant part of my life.” I made travel plans for the April Trials meet five months ahead, though we didn't know if Beth would qualify for the 2004 Paralympics. Or if September in Athens would be an option with whatever college she would attend. What we did know: women in the S3 classification would be cut to only three events in Greece, the 50 and 100 free, and the 50 back. The reason? The small number of S3 swimmers in the world. It made no sense to me to restrict exceptional athletes who dealt with enough limits from severe disabilities. Beth moved up the International Paralympic Committee World Rankings to tenth or better in several events, including the individual medley. Many S3 swimmers struggled with long races. She pushed herself farther at every swim practice. The greater the race distance, the higher her world ranking. However, the 100 free would be the longest event for S3 swimmers at the ultimate competition held every four years—the Paralympics. “My favorite event is the freestyle,” Beth said, “but fewer people who have (severe) disabilities can do the butterfly and breaststroke, so I’m grateful I can.” The strokes she was grateful for also would not be an option at the Paralympics for S3 swimmers. The unfair cuts frustrated me, while Beth resigned herself to more restrictions and carried on. Next: a monumental change of direction!   (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
On a free day, Beth suggested the Mohegan Sun casino to see the immense works of art. Wheeling through massive spaces, she realized at one point that we had accidentally entered a restricted area for adults eighteen and over. With slot machines nearby, Beth, seventeen, asked to try the poker slots. I put quarters in the machine and let her tell me which cards to keep. She never touched the slots and helped me lose $30. I took photographs at every destination while Beth collected menus and flyers and other small things for a scrapbook she planned to make. She found one she liked at a shop in the historic bridge district in Mystic, Connecticut. Equally exciting, we found the fifth Harry Potter book, The Order of the Phoenix, to add to her collection, one of the five million copies bought in the first 24 hours. Beth’s happiness was contagious. We ate lunch at Mystic Pizza, famous for the 1988 movie with the same name. I helped her scoot out of her chair to a seat in a booth. Memorabilia decorated every nook and cranny at the restaurant and Beth rated it the best pizza, ever. I bought her “A Slice of Heaven” T-shirt. We sat on the waterfront of Mystic’s picturesque harbor on a flawless afternoon. An easy travel buddy, Beth appreciated everything under the sun. She tilted her face upward, closed her eyes, and smiled. I wrapped her in a big bear hug. She patted my back with her right hand, a habit from her toddler days. Knowing how suddenly bad things could happen, I would never take joy for granted. I embraced the singular moment while a new realization dawned. My guilt for causing her injury was self-imposed and no one, least of all Beth, blamed me. Junior Nationals ended with a dinner and dance in a large packed ballroom. When loud music started, hundreds of kids with every kind of physical disability danced standing up, sitting in a wheelchair, or break dancing on the floor. With no one different and no one the same, they all shined in that snapshot of time. Beth danced carefree in the middle of it all. Next destination of a non-stop summer: Cambridge, Massachusetts!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
After my youngest daughter's spinal cord injury (C6-7), no one thought she could be in the water without someone holding her up — no one except Beth. “I really didn’t expect to ever be able to compete, so that surprised me,” Beth said. Seattle was a trip of firsts. At the Detroit airport, an agent asked about Beth’s wheelchair. No, she could not walk to her seat on the plane. No, she could not stand. What was an aisle chair? I moved Beth into one of the airport’s clunky wheelchairs. I folded her blue chair, duct taped it together, and watched it disappear on the conveyer belt with the luggage. Not my best idea. We should have kept her blue wheelchair until she boarded the plane, where it would be “gate-checked” with the baby strollers. The chair could still be damaged, but the odds were in our favor when it was on top of the pile as opposed to underneath. Less than a year after 9/11, heightened security reminded us of the threat of terrorism as we made our way to the gate. We found out that we would board first. Down the jet bridge, near the open door of the plane, I transferred Beth to an aisle chair, an odd seat with a width of about 15 inches that rolls on four tiny wheels. An employee fastened an abundance of straps before he pulled her backwards down the middle of the plane. We lifted her over the armrest to her seat. Things that don’t matter until they do: worrying about autonomic dysreflexia triggered by cabin pressure, bruising her lower leg from spasms hitting the bottom of the seat in front of her, apologizing to the passenger who had to crawl over Beth to get to their window seat, and staying seated for five hours. She held my hand while the plane took off. Neither one of us thought to lift and move her legs to reduce the threat of blood clots on that first long flight. Deboarding in Seattle, the procedure reversed. We waited for an aisle chair after the other passengers left. On the jet bridge, we borrowed another airline wheelchair to get to baggage claim. I grabbed Beth’s blue wheelchair off the conveyor, the chair that had traveled cross-country with luggage piled on top of it. The travel gods smiled on us: no major damage, just one bent brake lever. And no blood clots. The shuttle to get to our cheap rental car was not accessible. Instead of being lifted into the shuttle or taking a taxi with me to the rental car, Beth chose to stay in the airport while I left with the luggage and rushed back to pick her up. I took off the big wheels of her chair and put them in the backseat. The rest barely fit in the trunk of the economy car. With no GPS, I handed Beth printed Google map directions to help me navigate, nervous about my first rental car. She pointed out a striking sign. “I saw a billboard with a girl in a power chair and a Harvard graduation cap on,” Beth said. The caption simply said, “Quadriplegia at Harvard: A+.” We arrived at the pool in the afternoon for her classification appointment that attempted to even the playing field. Theoretically, competition would approach fairness by grouping those with similar physical function. The devil was in the details.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
During Beth’s first summer vacation at home with a spinal cord injury, she focused on time with friends. We rode with another mom in her van full of excited teenagers to an N’Sync concert in Michigan, with the words “PopOdyssey N’Sync” in bright paint on the back window. Near Detroit, a traffic jam on I-75 turned into a party. Girls blared music, waved signs, and shouted to each other across the highway lanes. That might have been fun except for temperatures in the 90’s with high humidity. The van had no air conditioning and there was no breeze as we inched along. Beth flushed with fever, her body unable to sweat to cool down. I carried Tylenol, but nothing to drink it down with since we didn’t anticipate the traffic jam. I encouraged her to take it without water, but she wanted to wait. Approaching the stadium, I frantically waved the handicapped-parking placard out the window at the traffic cop to avoid another jam of cars. Finally parked, I hurried Beth out of the van to the first drink stand for cold bottled water. She took the Tylenol and drank extra water before we found our seats. In shade, Beth felt better before long and danced with her friends. They watched Justin Timberlake, the 20-year-old who stole the show in the pulsing lights on the stage. Our summer comings and goings confused Beth’s high-strung African Gray parrot. He plucked out feathers and injured his skin. A vet put a plastic cone around his neck, making him more miserable. We wondered if Timber had been taken from his parents too soon, and a friend recommended a bird sanctuary in Cleveland. Whether it was my fault or not, the parrot toddler needed more help than we could give. I drove him to the sanctuary, which included an extensive outdoor aviary with dozens of birds. Beth and I cried when we said goodbye to Timber, but we were glad to hear that he recovered quickly, delighted in his new home. Early on an August Saturday, firemen lifted Beth in her wheelchair onto a boat at a Sandusky pier on the Lake Erie shore. I skipped the fishing part of the Fishing Without Boundaries event. When the boats returned, I heard about how Beth caught more perch and walleye than her dad. The boat’s young first mate watched three fishing poles and handed one to her whenever he had a nibble. She reeled in about two dozen fish and let someone else take the fish off the hook. A friendly crowd gathered for a picnic near the docks. A mom told me how children at school made fun of her daughter, who grew up feeling like a victim. A dad shared his ongoing battle with pressure sores, reminding me of an article I read about a woman who had both legs and part of her trunk amputated because of pressure sore infections. Surrounded by the perspective of significant disability, I understood the mental argument that I should be happy and grateful. I was grateful. I could get through most days without crying, and yet... ...part of me sludged through guilt that felt like grief. ...through depression and anxiety that made me afraid of the future. Catastrophes seemed to be waiting in the wings, for Beth, for me, for the rest of our family, for our friends, and for the world. I listened to Beth laugh with the other teenagers and wondered if she could avoid depression entirely. |
Cindy KolbeSign up for my Just Keep Swimming Newsletter by typing your email address in the box. Thanks!Categories
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