 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!
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 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!  A surprising event highlighted our spring.
On college teams, athletes with any kind of disability were very rare. After her freshman year, Beth hoped to continue as manager of the swim team with the privilege of practicing with members twice a week. Instead, Coach Morawski asked her to be an official member on the roster of the Harvard Women’s Swimming and Diving team. The invitation was a gift she hadn’t expected, serendipity in its purest form. All the more treasured because she would be the first member of the team with a visible disability. The first quadriplegic. The first wheelchair user. “As a swimmer with a disability going into a Division 1 school,” Beth said, “I didn't know how I would be welcomed because I am not going to be able to score points.” “We were not sure how it was going to work.” Coach Morawski told a reporter from the NCAA Champions magazine. “Everyone is absolutely impressed by her.” Elated, Beth added, “I had no idea Harvard would accept someone with a fairly severe physical disability on the team.” Only Beth could refer to quadriplegia as fairly severe! As tulips bloomed randomly in Harvard Yard, I talked to Beth on the phone about every other day and we met each week for lunch. We’d split a turkey sandwich and two small chocolate desserts at our favorite spot, Finale. After, we stopped at the Brattle Square Florist where I bought a few sunflowers, her favorite flower. She kept them in a vase on her desk. Rakhi surprised Beth with a small birthday party at Finale with a beautiful chocolate cake. Soon after, Beth’s best friends from high school visited with one of their moms. Ellen and Lizzy camped out in Beth’s dorm room while the mom stayed with me in my apartment. We all watched Beth practice at Blodgett before exploring Boston. We walked the Freedom Trail to the Holocaust Memorial and headed to the Prudential Center. We rode the elevator past the expensive Skywalk viewing level and stopped at the Top of the Hub restaurant on the fifty-second floor, to admire the sunset. Glass walls offered a beautiful panoramic view. On a budget, we sat at a table in the bar instead of ordering pricey food at the restaurant. Underage, the three girls drank sodas and we shared a plate of cookies. Lizzy amazed us by pointing out landmarks and neighborhoods in every direction, even though it was her first time in Boston. Next: Swim Trips to Michigan and England!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s roommate returned to the dorm from India. Rakhi shared sad stories about her volunteer work with children who were orphaned in the late December earthquake and tsunami. The tragedy killed more than 230,000 people in fourteen countries. Living in Cambridge, a truly international city, I felt more connected to a big world than I had in Tiffin, Ohio. About three weeks after the blizzard, Beth’s car still sat encased in snow and ice up to the windows. Snowplows clearing the street piled up extra snow on one side. An announcement from the city of Cambridge incited panic. Officials would begin to ticket cars that had not been moved since the winter storm. The next morning, crowds of people attempted to free their cars all over town. I tried my best, but half an hour later with little progress, I paid two teenagers to help who had chipped ice away from the wheels of another car. Spring couldn’t arrive too soon. A new semester packed Beth’s days with classes, volunteering, swimming, ongoing assignments, and a heap of books. Her first semester grades, all B's and A's, calmed her fears of not belonging at Harvard. She didn’t stress about breaking her all-A streak from high school. College life challenged her with the daily basics, so she prioritized her time and avoided social activities. With early morning swim practices and late night studying, she took advantage of breaks between classes for power naps. Beth made an attempt to take care of herself through her toughest winter. The continuous scrapes on her legs and feet from the pool walls healed slowly. She put waterproof bandages on the worst ones. When a cold surfaced, she treated it seriously to avoid chest congestion and pneumonia. She followed her lung doctor’s advice with decongestants, extra water, and more sleep. Swimming maximized the impaired lung capacity caused by her injury, but when she caught a cold, she still had a small, weak cough. She discontinued the last of her asthma medicine, Advair, with no return of symptoms. Since her leg spasms lessened with frequent swimming, she stopped taking a muscle relaxant. Except for a round of antibiotics now and then, she appreciated being medication free. . . . A rare thing for someone with a spinal cord injury. The college swim team season ended in February with the Harvard Women’s Swimming team as the undefeated Ivy League Champions. When team practices stopped for the rest of the school year, Beth focused on her four-year swim plan and continued to practice religiously. She grounded herself at Blodgett pool. Next: An Astonishing Invitation!  My blogs about my family’s surprising story will continue next week!
Today, it’s time to accept the Sunshine Blogger Award! The Sunshine Blogger Award is given BY bloggers TO bloggers who inspire positivity and creativity in the blogging community. Thank you Amber, for nominating me! Amber’s blog is The World Sees Normal. The Rules 1. Thank the blogger who nominated you and link back to their blog 2. Answer the 11 questions the blogger asked you 3. Nominate 11 bloggers to receive this award, and write 11 new questions 4. List the rules and display the Sunshine Blogger Award logo on your blog Amber’s Questions for Me: 1. If you could pick one person in your life to switch places with so they could feel how you feel for the day, who would it be and why!? That person would be the neurosurgeon who walked into an exam room, met me for the first time, and said, “Your pain needs to be much worse before I recommend surgery.” And I wasn’t asking for surgery! I wondered how he could assess someone’s pain level just by looking at them. 2. When you have people in your life that just can’t seem to understand you and your illness, what have you found to be the best way to explain it to them, so they understand? I rarely try to explain. It’s easier not to talk about chronic pain. 3. When you have some time just for you, do you enjoy the quiet of being alone or would you rather be with a close friend or family member? I love spending time with my best friend, John. We’ve been married for 40 years! 4. What is your all time favorite TV show? My new favorite TV show is Rise. 5. What is your guilty pleasure? Watching the Princess Bride movie, which reminds me of popcorn parties with classic movies when my children were growing up. 6. What is the most UNBELIEVABLE thing that someone in the medical profession has said to you? See my answer to #1! 7. What is the most annoying thing to you about living with a chronic illness? The fact that neuropathy, neuralgia, fibromyalgia, and advanced arthritis are forever. (My constant headache seems permanent, too.) Even so, I'm grateful for every day. 8. If you were able to have three wishes what would they be and why? Peace, health, and happiness—for all. 9. What is one activity in life that you loved doing, and have had to now give up due to your chronic illness? I refuse to give up anything, but some things like exercise and embroidery are more difficult. 10. What blog have you enjoyed writing the most and why? My blog about possibility and perspective, with or without a disability. It sums up what I learned over the decade after my daughter’s injury. 11. What is the most ridiculous comment that you have ever received on social media or as a comment on your blog? The only negative/ridiculous comment I received accused me of exploiting disability, yet the rest of that same comment showed he hadn’t read the post. I’m proud to be a lifelong disability advocate! My Nominations for the Sunshine Blogger Award: Kelly at Art & Words Amy at Amy Henry Books Maryanne at Pink Gazelle Kristen at New Dawn for Us Robin at Mentoring Matters Tsara at Autism Answers Andrea at Saving Joyfully Nancy at Exquisitely Me Enna at Cabin Twenty-Four Patricia at Free Oversea Joy at Sunkissed Scribbles My 11 Questions: What corner of the world are you from? How long have you been blogging? Why are you blogging? What do you like best about blogging? Where would you like to travel? What would you do if there was no chance of failing? Favorite season? Favorite food? Favorite music? Favorite book? Favorite quote? AND . . . NEXT WEEK ON MY BLOG: Surprises in Cambridge after NYC!  (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.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The friendly lady who picked me up in the blizzard drove slowly up Mass Ave in Cambridge for over a mile. With barely one driving lane and no option to pull over, she stopped in the street and dropped me off two blocks from the Quad, saving the day for me. Surrounded by rolling hills of snow, I trudged down the middle of a closed side street the rest of the way, numb and battered by gale-force winds. Only one other pedestrian braved the blizzard on a street usually teeming with students and residents. Each of us could hardly even make eye contact, bundled to the max and looking down to cut the wind attacking our faces. I had never been so happy to reach and enter a building. In the warm room where I listened to the student and typed his words for his final exam, snow and ice melted in a puddle under my feet. After the final, I dreaded the walk ahead. On my way to Beth’s Harvard dorm, I stopped at the only business open, the Starbucks at the corner of Mass Ave and Shepard Street. A kind soul had shoveled a narrow trench from the door to the corner of the street. The snow on each side reached my chest. I sipped a hot chai tea and carried a latte for Beth for several blocks to her dorm. I climbed high snow hills on the ramp to the entrance. I called ahead and she met me at the door to let me in. Her latte was freezing by the time I arrived. I was glad to hear that her proctor had already offered to bring her meals from the dining hall. Drifting snow continued to block the dorm ramp after the blizzard winds died down, despite frequent clearing by college maintenance staff. No kind of wheelchair could get through, so I stopped to see Beth each day before or after my Coop shift. The sidewalks stayed impassable for a few days afterward, so I joined the many pedestrians walking in the streets close to cars. Compared to walking in the blizzard, trekking to the Quad and Beth’s dorm in bitter temperatures on icy roads and sidewalks felt like an improvement. When snow still blew, I pushed Beth’s wheelchair to and from the shuttle stop to resume swim practices. The shuttle drivers helped her up and down the icy hill at the entrance to the pool in the aftermath of the blizzard. Next: An Unanticipated Obstacle!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
January of 2005 started calm and cold. I bundled up to walk to my personal care assistant job six mornings a week along with second shift at the Harvard Coop bookstore five days a week, seven hours a day. During my evening shifts, I rode an ancient elevator to the cavernous basement storeroom when customers requested specific sizes not on display. Mice darted in and out of the shadows. It bothered me that the storeroom was always a mess — and it wasn’t my job to fix it. I obviously inherited my dad's precise organization. I sometimes had dreams of searching for something important among never-ending boxes in chaos. The day of Beth’s last final exam, a classmate pushed her through rising snow to and from the test. The snowfall shifted to a winter storm, burying sidewalks and cars. The worst of the blizzard hit on a Sunday. A snow emergency. Unearthing the car was not possible. Besides, there was nowhere to go. Ellsworth Avenue had endless drifts much too high to drive through. Everything closed, including the Coop, but I was scheduled to scribe for a final exam. The blizzard set records for New England, and not in a good way. When I couldn’t reach anyone by phone, I decided to walk to the Quad for the test, scheduled at the same dorm where the student with cerebral palsy lived. I also wanted to check on my snowbound daughter. I layered my clothes and added an extra pair of socks. The first person in my apartment building to try to leave, I worked for several minutes to free the frozen front door. Next, I fought with the icy snowdrift forming a barricade on the porch side. I could barely squeeze out. The porch floor, steps, and sidewalks disappeared in an ocean of white. Frigid blasts blew my breath away. I waded through thigh-high drifts on Ellsworth to Broadway. An attempt had been made to clear the bigger street, making my ankle boots briefly useful. I walked in the road around abandoned cars, even though I couldn’t begin to hear a vehicle approaching with the wind. The few cars on the ice-covered street drove slowly. I advanced half a block and turned back, ready to give up, when a lady in a van offered me a ride. She headed north on Mass Ave and told me she had never picked up anyone before. It was a first for me, too. Next: Blizzard, Part 2!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
As 2005 began, Beth and I started the drive back to Massachusetts. John stressed over the snowstorm in our path. I didn’t worry about weather, but I respected it, even more so after I hit an ice patch on the highway through Buffalo and spun full circle across three lanes. I shrieked and steered out of it, suddenly winded. With no cars near us, I stopped for a moment and breathed deeply to counter the tidal wave of feelings that took me back to the earlier accident that injured Beth. Lucky for us, few cars braved the weather. Beth studied for finals and swam with the team for three practices a week at Blodgett, her new favorite pool, with two more practices each week with the assistant coach. Beth called me one morning, exhilarated. Coach Morawski asked her to race at a Harvard home meet for the first time. We ordered the team T-shirt for parents for me, with Beth’s name on the back, and celebrated with Finale desserts in the Square. At her dorm, she showed me a new gift with a big smile: the HWSD team’s warm up jacket and pants. At the early January home meet, I sat in one of the red seats in the section for parents, right above where the team congregated on deck. I proudly wore my shirt, but it wasn’t about me. I was thrilled for Beth. I also met friendly parents, understandably surprised to see me in their section and a girl in a wheelchair warming up on deck with the team. They no doubt would question their daughters after the meet. A full crowd gathered in the upper stands. Beth joined a procession led by the Harvard team captains, chanting in unison all the way. The young women gathered in a circle to wrap up the cheers before warming up on deck. I never thought I would see my daughter with a college swim team. Wearing a coveted Harvard swim cap, Beth wheeled by herself to the far corner of the huge pool and used the chair lift independently to get into the water. She swam under the plastic lane lines easily, no longer a challenge as it was at her first wheelchair games. To begin the 200 free, Beth pushed off the wall with her hands while others dove off the starting blocks. I watched the clock and jotted down the numbers every time she touched the wall. I sat forward in my seat, my excitement growing with each lap. The other girls finished the race and I held my breath as she swam the last lap by herself. I wished John, Maria, and Ben could have been there. Beth’s first race at Blodgett pool set a new short course S3 Paralympic American Record in the 200 free—and in every official distance along the way, the 50 and 100. Three new records in one race! The announcer shared the news with the crowd, and the young women on the Harvard team cheered the loudest. And not for the last time. Next: Blizzard! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) After my morning job at the Quad, I headed to Harvard Square, a canvas bag always on my shoulder with a writing project and a book. Bright holiday music surrounded pedestrians and sometimes competed with a street performer braving the cold. Glitter and garlands hung over the streets, while store windows beckoned with cozy scenes of home and hearth. Christmas in the city. The Coop competed with the Square with lavish decorations and elaborate displays in every department. My second shift usually passed quickly between standing at a cash register and folding endless sweatshirts. I stood in a long line at the Coop time clock before walking home in the dark. The significant number of pedestrians on the sidewalks late at night continued to amaze me. In my sparse little bedroom, I opened my sewing bag and stitched lace on wings of felt peace doves to give to work friends. On my day off, Beth and I sang along with the performers at the annual Christmas Revels at Harvard’s Sanders Theatre, a beautiful rounded space with a dome ceiling made of natural wood. First semester classes finished for Beth, with finals to be held after a two-week reading period in January. She packed several textbooks and novels before we drove home to Ohio for the holiday break. John Mayer and others sang to us from the music mixes Beth made. Notably missing on the drive was her N’Sync Christmas CD. At home we played it on repeat. We watched favorite holiday movies with Maria. John suggested a dinner date. My best gift: Ben home from college and all of us together. I accepted an invitation to the Christmas party at the group home where I had worked. Not surprised that little had changed, I hugged the residents. And left later with relief and no regrets. At my mom and dad’s farmhouse in Vermilion, a tall live tree with handmade ornaments lit up the high ceilings and long windows of the parlor, as it had every December for well over a hundred years. Ben, Maria, and Beth gathered in front of the tree with their four cousins for the traditional holiday photo. I stood in the same spot many years earlier with my brother, sister, and cousins. At my in-laws in Lorain, John pretended to steal presents from his sister Jean to make her smile. She counted down the days until her January birthday. Beth rang in the New Year as she had for the last five years, with her best friends Ellen and Lizzy. They watched the Elf movie and shared college stories. Her friends also made plans to visit Beth at Harvard for the first time, over their spring break. I loved how the girls continued their New Year's Eve tradition of fondue, movies, and easy laughter. Next: First Harvard Swim Meet!  |
Cindy KolbeA mom with a story
to share about injuries that never heal and fortunate accidents. About guilt, disability, perspectives, and unexpected adventure. Follow my
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