(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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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The autumn months turned into a strange and lonely time for me. Every morning, I woke up early in a cramped apartment and made oatmeal. I hiked the half hour to my personal care assistant job, rain or shine. I memorized the routine and my role in it. I tried to avoid impatient reminders from the upperclass student if I paused too long. After my morning job, I had about four hours free. Anything Beth needed as she started her freshman year of college was my priority. I helped her pick up medical supplies in the mailroom. I took her wheelchair to get the bearings replaced, while she used an old back-up chair. I bought snacks for her or groceries for me, or carried my dirty clothes to a laundromat. (She still wouldn't let me do her laundry.) I usually stayed in Harvard Square in-between my jobs. I drank tea, read, and wrote, alone with a constant tension headache. Nothing made it completely go away, but many things aggravated it. My goal was to keep it at a lower level and avoid pain spikes. At 2 pm, I started second shift at the Harvard Coop. The crowds in the textbook department thinned out as the semester progressed, so my hours dropped to seven a day, five days a week. I stocked shelves and sent emails about ordered books. One evening, I recognized Wallace Shawn who played Vizzini in the classic, The Princess Bride. The movie had played more than a few times during popcorn parties at our home in Ohio. I also chatted with actress Sharon Stone. Coop employees often talked about frequent celebrity sightings. During my break, I sat outside in nice weather to eat my peanut butter sandwich, people watching and listening to talented street musicians. I eavesdropped on tourist conversations and made a game out of guessing the languages they spoke. This carried over to my work hours at the Coop, where I sometimes asked customers where they were from. At 9 p.m., I joined the line waiting to punch out before I trekked past Beth’s dorm to my apartment, a half an hour walk. I called John, Ben, Maria, Beth, or my parents on my walk home. I carried pepper spray and a whistle. Alone on dark Cambridge streets, I felt surprisingly safe with plenty of people all around. Each night, I poured a bowl of cereal or heated up a can of soup before showering and sleeping, with the notable exception of Friday evenings. To usher in the weekend, I stopped at CVS after work to buy a pint of Ben and Jerry's frozen yogurt, either half-baked or cherry garcia. A difficult decision. I always had good intentions of not eating it all at once. ;-) Next: A Big City Scam! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
News quickly spread during freshmen orientation about Thefacebook, a website initiated only months before for Harvard students. Beth joined her peers to ride the first wave of social networking in 2004. Orientation wrapped up with tradition. Freshmen watched the last movie filmed on the Harvard campus in 1970, Love Story, with added audience participation. Freshmen dined together in a stunning wood cathedral with stained glass windows. The chamber resembled the dining hall in the Harry Potter movies. The main entrance had many steps, so Beth wheeled the extra distance to the back entrance of Annenberg Hall to the elevator. She set a tray on her lap and could reach most of what she wanted. The friendly ladies who worked there offered to assist. Beth rarely asked for or accepted help. The 1,500 freshmen met new friends at meals, though entering alone and deciding where to sit could be intimidating. Beth preferred to snack in her room until Rakhi encouraged her to go to Annenberg more often. When they dined there together, Rakhi made sure they sat with other students. She decided on her own to identify herself as a freshman. A first-year student, yes, but in graduate school. I assumed I would do--should do—Beth’s laundry, especially during the challenging transition. I also felt the need to help, to make one small aspect of her days easier. She categorically refused. At home, she couldn’t get close to the washer and dryer with her wheelchair. In the dorm, she could reach the side-by-side appliances. Still, I attempted to change her mind. I could do it faster. She’d have more free time. I even offered to take her clothes to a laundromat, in case she didn’t want me to use the dorm laundry room. That wasn’t it. Next, I offered to pay for the laundry service on campus. Never happened. Instead, I explained how to sort clothes. I don’t think she was listening. Beth drew a line in the sand with laundry. However, doing it herself was never a priority until she put on her last pair of clean underwear. She bought extra underwear at the Gap in the Square to put the task off longer. She very slowly dragged a big, overstuffed mesh bag full of dirty clothes across the floor, down the hall, and into the elevator. Laundry soap and a baggie of quarters sat on her lap. Like many other college students, she learned the hard way that whites don’t stay white if you wash them in hot water with dark colors. Clean laundry came back up to her room in the same mesh bag and on her lap. Most of it found a home on an extra chair in her bedroom. A small price to pay for independence. (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.)
Nothing in Tiffin, Ohio prepared us for the challenges of living in Cambridge, Massachusetts. On a sunny fall morning, I drove through the main gate of Harvard Yard and joined the line of vehicles waiting to unload in front of the freshman dorms. The one and only time we drove our car on the wide concrete walkways of the picturesque Yard. I parked by Thayer dorm and unearthed a wheelchair from the hatchback. Beth carried what she could on her lap, holding a pile in place with her chin as she wheeled into the building. In her second floor suite, a paper on a bookshelf listed previous occupants since 1886, including Brooke Ellison, the young woman pictured on the ‘Quadriplegia at Harvard: A+’ billboards. She graduated from Harvard in 2000, the same year as our car accident. Tall windows overlooked a wide courtyard with lovely old trees. I left Beth at the dorm while I moved the car. While she picked one of the two bedrooms and started to unpack, I eventually found a parking place several blocks away. Her roommate Rakhi would arrive the next day and they would share a common room and a bathroom. I offered to stay with Beth the first night, even though I knew her answer would be no. I supported her independence, but I also struggled with letting go. I accepted the uncertainty of whatever my new role would be with Beth, but the thought of living in a strange place on my own and finding new jobs overwhelmed me. That evening, it was time for me to move into my new living situation for the next eight months. My head pounded, beating in unison with my heart. What should I expect with the apartment and the person I’d share it with? I had never been on my own before, except for one year in a dorm at OSU. Cambridge looked like a foreign city compared to Tiffin. With no GPS, I followed a printed map. The unfamiliar surroundings stoked my anxiety. I missed a turn and circled back on unusually narrow one-way streets, former horse and buggy paths. I focused on avoiding poorly parked cars, heavy traffic, assertive walkers, and too many bikes. I wished for a fraction of Beth’s courage. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
My last day as manager of a local group home, I finished painting a small room and hugged the residents goodbye, with a promise to visit. What a relief to pass on the responsibility and to know I left everything in good order. As I packed for our girls’ trip to New York City, I couldn’t stop smiling. We crowded into Beth’s car for the eight-hour drive, singing along with popular songs on the radio. After a harrowing drive in Manhattan to the hotel, we left the car in a parking garage and explored on foot and by taxi. By our small town standards, every ride in a yellow taxi was wild, an accident waiting to happen. I secretly bought NYC taxi ornaments for the girls for Christmas gifts. In Central Park, Maria and Ellen lifted Beth into a covered carriage pulled by horses for a ride in the rain. I worried about leaving her wheelchair behind, but it was there when we returned. We enjoyed a ritzy restaurant afterward, the four of us sharing two meals to make it affordable. For dessert, we walked/wheeled to Serendipity, a cafe popularized by a movie of the same name. The steps at the entrance were surmountable, but sadly, we didn’t have enough time to wait for a table before our show. Our first Broadway play, Wicked, with the original cast, drew us in with exquisite detail in the songs, sets, costumes, and story. Unlike anything we had ever seen before. Wowed, we left the theatre with a ‘Popular’ shirt for Maria and one for Beth with her new motto, ‘Defying Gravity.’ On the drive home to Ohio, we sang Wicked songs along with a CD of Indina Menzel and Kristin Chenoweth, belting out my favorite lyric. “Everyone deserves a chance to fly!” (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
In July, Maria prepared for the lead role in Kiss Me Kate! at Tiffin's Ritz Theatre. Opening weekend, we hosted a cookout in our jungle of a backyard. The dramatic transformation from grass to garden featured fast growing poplars, butterfly bushes, a small pond, and colorful blooms of flowers I couldn’t begin to identify. The beautiful variety of hostas had been gifts from my grandma’s farm and my brother’s garden. John called the garden his therapy. I acquired poison ivy easily, a fact that provided me with a convenient excuse to avoid weeding. Even without an excuse, the group home demanded my time as I trained a new manager and prepared to leave everything in good order. The same day as our cookout, we filled up the front row of the theater with our extended family to see Kiss Me Kate! When the play ended we jumped up, the first to our feet for the standing ovation. My talented Maria had another weekend of performances and an additional new job as an admission tour guide for Heidelberg College. She stayed home while John drove with Beth and me from Ohio to Massachusetts for his first Harvard visit. At Peggy’s suggestion, we met with the head coach of the Harvard Women’s Swimming and Diving team. We had heard about Caroline Miller, a deaf swimmer on the Harvard team who graduated in 1996, but we understood a quad had no hope of finishing a college race in the top three at any meet. “I needed a pool to swim,” Beth said. Coach Morawski congratulated her on National Team status and mentioned limited lane space during team practices and how their workouts could overtax the upper body of a paralyzed swimmer. All valid concerns. At that point, we thought the meeting was over. An unexpected invitation followed when the coach offered the position of team manager to Beth. As manager, she could practice once a week with the team and swim a second time each week with the team's assistant coach. More than anticipated, Beth happily agreed and planned to swim additional days each week on her own. Our next stop: the disability services office, Beth and I interviewed prospects for an assistant. A friendly graduate student named Rakhi would share Beth’s dorm room in September. In Harvard Square, talented street performers entertained us. We listened to an older gentleman play an unusual string instrument. I added coins to the Kleenex box he set out for tips. We bought a few books at the Harvard Coop and ended the trip with our first meal at Legal Seafood in Kendall Square. We shared a Boston cream pie for dessert and posed for pictures by the fish sculpture near the entrance. On the way back to our hotel, Beth showed John how to start the unique chimes in the Kendall Square T station. We left metal tubes singing between the trains. Next: NYC! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
After Beth’s high school graduation, a nonstop summer swept us away. Swim training fit in-between time with friends. She wore new contact lenses, pleased when she practiced and figured out how to put them in and out on her own with uncooperative hands. In Columbus, Beth helped Coach Peggy with an adapted demonstration for Ohio Swimming coaches. From there, we drove across town to her second Youth Leadership Forum (YLF) for students with a disability. As a staff assistant instead of a delegate, Beth made it her first completely independent trip of five consecutive days. No small feat with a C6-7 spinal cord injury, even with an accessible hotel room. The day after YLF ended, she had one night at home before her flight from Cleveland to Washington, DC, for her first National Youth Leadership Network conference for youth with a disability. “It was my first independent flight,” Beth said. “I’m not sure why, probably just something new and being nervous, but I got teary when Mom left me at security.” On the jetbridge, Beth instructed staff on how to lift her to the narrow aisle chair. They waited while she broke her leg spasms on her own. She helped with the seatbelts and held her arms tucked in as they pushed her down the aisle of the plane to her seat. They stowed her wheelchair underneath with the luggage, minus the cushion and sideguards. When the plane landed, she waited until the rest of the passengers left, reclaimed her wheelchair, and met her contact in baggage claim. A van with a lift waited to take her to the conference. I breathed easier after her phone call from a nice hotel. I had stressed needlessly. Her experience in DC made the stress of the solo flight worthwhile. “When I represented Ohio at the national conference,” Beth said. “I came to understand that the Americans with Disabilities Act and the work of the early pioneers in disability rights was far from over.” “My generation has grown up since the ADA so it’s easy to take it for granted, because we didn’t have to fight for it. Learning from the people who did have to fight and listening to their stories was empowering.” Next: An unexpected new role on a college team! (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.) At the Edmonton, Alberta swim meet, Beth met the other S3 women from Germany, Norway, Denmark, and Mexico. The women from Mexico and Germany held the top spots in the World Rankings; to race, they left their wheelchairs behind to stand and walk a step or two to the starting blocks. Their coaches helped them climb on and prepare to dive in. My daughter started the race in the water with an ineffectual push off the wall. With the tough competition, Beth didn’t expect to earn a medal for a top three finish. Also unexpected: the swimmer in the next lane stayed in her field of vision, sparking momentum. For the very first time in her life, she experienced how it felt to see and to race a true competitor, to beat her to the finish by less than a second, and to earn a third place international medal. Beth surprised us next with second place in the 100-meter freestyle race. Right after, officials tagged her for her first drug testing. They worked for the United States Anti-Doping Agency (USADA), the same agency that tested Olympic athletes. Officials stayed close by as a Team USA coach supervised her cool down laps in a separate small pool. From there, Beth participated in her first ceremony for an international medal. Next, the coach explained the test procedure and walked with her while USADA officials led the way off the deck. In the 100- and 200-meter events, Beth finished ahead of the S3 women from Germany and Mexico. She started to think of herself as a distance swimmer. The five S3 women in Alberta, Beth included, swam slower than their previous best times. Small health issues like spasms, skin scrapes, minor infections, and low-grade fevers had a bigger effect on those with severe disabilities compared to others who did not. Temperature changes impacted quads in a negative way, as well as not drinking enough water. The physical stress of traveling and time changes also factored in, one of the reasons that teams going to the Paralympics every four years arrived in the area weeks ahead of the actual event. Beth rested in between the sessions of the three-day meet. No sight-seeing in Edmonton, except for the hilly view from the airport. From the stands, I watched Beth on the deck. In between races, she laughed at the antics of the teenage boys on the team. They “borrowed” the Australian team's frog mascot and noisemakers, stoking a friendly rivalry. During her medal presentations, I used my deck pass to take pictures. Beth earned her first international medals, two silver and two bronze. Medals that mattered. We landed in Detroit to discover the airline had lost a sideguard, one of two small curved plastic shields to protect clothes from wheelchair wheels. A new shield cost $100. I bought one and started the long process to be reimbursed from the airline. After Alberta, she took the sideguards off before she boarded a plane. Next destination of a non-stop summer: John Mayer in Columbus! |
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