(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Through the disability services office, I accepted a third part-time job as a scribe for a Harvard senior with cerebral palsy. I typed while he spoke for a practice session, then the real thing for his essay tests and final exams. My typed words appeared on a large wall screen for the student to read. The young man impressed me and I learned about different subjects as I typed. Unfortunately, it was only a few hours each semester. The job paid more per hour than my other two combined and I liked it the best. The frigid months brought unwelcome lessons for Beth and me. In Ohio, I very rarely bothered with a scarf, hat, or mittens, but then I never walked long distances in winter. In Massachusetts, I bundled in layers for my early morning walks to the Quad. When new snow fell overnight, it transformed Cambridge to something clean and bright—at least for a little while. I appreciated the beauty of Cambridge even with dirty piles the plows left behind. The towers and steeples of timeworn buildings shimmered with dustings of snow. After her injury in Ohio, Beth had limited her wheeling in the winter from buildings to or from a nearby car, with little exposure to the weather. However, Harvard required extensive wheeling outdoors where even a light snow made pushing her chair difficult. No vehicles were allowed in Harvard Yard where Beth lived in the freshman dorm farthest away from the closest shuttle stop in Harvard Square. Health insurance usually paid for a motorized wheelchair for quads and I encouraged her to order one to use only in bad weather. Or special wheels with motors to fit her manual chair. She refused. Rakhi and I offered to push her to class or to the shuttle stop. Stubborn, Beth told us she’d ask only if the snow rose too high to wheel through. We learned the hard way how even a small amount of snow and ice could be dangerous for a quad in a manual chair. One bitter day in early December, Beth rode the shuttle from the pool to the bus drop-off in Harvard Square. From there, she wheeled across the Yard to her dorm. The six-minute walk doubled to twelve with light snow on the ground. Despite wearing wheelchair gloves, she ended up with white, numb, and hurting fingers. Whenever Beth had pain in her trunk, arms, or hands—all areas with less than normal sensation—it signaled a serious problem. I pushed her to the student medical center, where a doctor treated mild frostbite in her fingers and suggested better gloves. Not an easy solution for a quad. Beth preferred gloves with open individual digits to get a better grip on the chair’s big wheels. They exposed her fingers to the cold and required a considerable amount of time to put on. Regular snow gloves or mittens soaked up moisture from the wheel rims. Bulky gloves that kept her hands completely warm and dry, interfered with wheeling. I purchased new pairs of each kind anyway. Next: Christmas in the City!
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Many community festivals in Harvard Square attracted overflowing crowds that spilled into and closed the streets. The HONK! Parade during Oktoberfest was unlike anything I had seen. Think Dr. Seuss with brass horns, stilts, unicycles, and bikes! The event attracted costumed brass bands from around the country and the world. Not long after, I worked at the Coop during the Head of the Charles Regatta, the world’s largest two-day rowing event. With too many bodies in Harvard Square on a normal day, the regatta tipped the crowd to a crazy level and swamped the stores. At the end of my work shift, exhausted, I gladly left the colossal mess of clothes behind. It required several days to restock and put the displays back in order. On October 27th, Boston’s Red Sox won the World Series for the first time in eighty-six years. Harvard students replaced the pumpkin on the head of the John Harvard statue with a Red Sox stocking cap and scarf. In Harvard Square, students and locals joined together for a party. Beth braved the crowd for a short while, as people danced on the roof of the Harvard T stop. She returned to her dorm to study while the loud celebration continued. John teased and called Beth a lucky charm, since she moved to the area right before the big win. Maria and Ben traveled to Boston for the first time with John to join Beth and me for Thanksgiving weekend and the holiday dinner at Legal Seafood. I bought tickets for The Lion King, on tour from Broadway. A work of genius in every way, from the set to the costumes. And, of course, we also had to see the fourth Harry Potter movie The Goblet of Fire, before we hugged goodbye too soon. Beth’s ventures continued to impact family and friends in unexpected ways. Soon after her Boston trip, Maria shared her big life-changing decision with us. A college sophomore, she planned to graduate with a double major from Heidelberg in Ohio—and when she did, she would move near Beth to teach. I supported her decision, though it made me sad to think of both of my girls in Massachusetts in the future, more than 700 miles away from John and me in our Tiffin hometown. I understood the draw of the Cambridge area. I had never been in another city as vibrant. A place that charmed with old-world history and diverse humanity, all the while assaulting the senses with too many emergency vehicles, taxis, cars, and bikes. A place that also isolated and challenged me every day for the nine months I lived there. Next: A Third Job! (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.)
After the first weeks of practices, the head coach asked Beth to swim with the college team twice a week (up from once a week), plus two practices one-on-one with the assistant coach. With lane space an issue during team practices, Beth learned to stay to one side in the lane, shared with a teammate who passed her often. In Blodgett's public locker room, Beth removed her seat cushion and backpack before showering in her wheelchair (and soaking the wheel bearings) after every practice. I offered to buy a plastic shower chair for the locker room. Instead, she decided to ask the coach for one, but put it off. Always reluctant to ask for anything special. When the wheel bearings needed to be replaced, the wheels stopped moving freely, catching and sticking. I drove her wheelchair regularly to a repair shop in the next town to the west, Belmont, where they replaced the expensive bearings. The challenges for Beth of removing a wet swimsuit, showering, and dressing in her chair very slowly became slightly easier. At first, when she had class soon after practice, she wore sweatpants instead of her usual jeans. One weekday evening, Beth joined the Harvard team on an excursion to a Boston club to support two teammates in a burrito-eating contest. She heard a joke with an element of truth: The main reason to swim on a college team? To eat anything they wanted! ;-) The T stop closest to the club had no elevator, meaning Beth stayed on the subway and rode past it to the next stop, then backtracked several blocks. Two swimmers walked the extra distance with her. At the club, Harvard football players carried her up a flight of steps. The two girls in the contest ended up in second place at the end of a late evening. On the way back, Beth joined the group at the closest, inaccessible T stop and the football players carried her on the steps. Stretched thin, Beth joined the other swimmers only hours later for an early morning practice, commiserating over their exhaustion and sharing plans for naps. Next: My strange new Cambridge life . . . (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s first semester of Harvard classes required more reading than was humanly possible for anyone needing sleep. She wanted to read every word, an insurmountable challenge. Like some of the other freshmen, she had doubts that she belonged at Harvard. College swamped her and she needed extra time to take care of herself. By herself. Swim training also required extended blocks of time. Beth called the shuttle operator to schedule rides to and from Blodgett pool, located south of the main campus over the Charles River. She wheeled a long stretch across Harvard Yard from her dorm to get to the shuttle, which dropped her off in the street above the pool. She learned to weave back and forth down the hill to the entrance to cut her speed and maintain control. Getting back up the hill? Always a slow challenge. On lucky days, another student going the same way would give her a boost. As fall began, Beth practiced once a week with the Harvard Women's Swimming and Diving team as team manager, plus a supervised practice another day with the assistant coach. With the addition of more pool time on her own with workouts from Peggy. At first, she compromised with three practices a week instead of her goal of five, to free time for homework. The swimmers on the team made Beth feel welcome. At one practice, the coach asked her strong college swimmers to complete laps without using their legs. Surprisingly difficult for even one lap. And harder still, using fists instead of open hands that could cup the water. With gradually increasing upper body strength, Beth swam hour and a half practices with modified drills and breaks at the walls. She thought of the frequent muscle soreness in her arms and shoulders as a reward for a good workout the day before. Next: What’s the main reason to swim on a college team? (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Before freshman orientation ended, Beth wheeled over to Harvard’s Phillips Brooks House Volunteer Fair. She chose the Kids with Special Needs Achievement Program (KSNAP), to help students with disabilities at an inner city Boston school. She didn’t think twice about getting to the big city once a week. She volunteered in a special education classroom every Friday afternoon and took turns with other students to plan and purchase materials for activities. Beth soon discovered the unpredictability of old elevators on the MBTA subway, called the ‘T’ for short. Other KSNAP volunteers, including her friend Brittany, moved her (in her manual wheelchair) up and down steps and escalators. Thank goodness John and I weren’t there to watch! We were grateful our youngest didn’t let obstacles get in her way, but we also worried about her safety. As Beth started classes, a swimmer from Michigan asked her to mentor a girl with a new spinal cord injury. When I heard about the emails they exchanged, Beth said, “I love mentoring!” At the Coop, I stood at a cash register in textbooks as students lined up to the back wall. While veteran staff supervised, eight of us, all new employees, rang up large bills at eight cash registers. We commiserated about our sore backs after the long shift. One evening, I worked at a cash register while Beth and Rakhi stood in a long line. On my day off, I returned to textbooks with Beth and carried a heavy stack. Her books included several thick novels for a Charles Dickens freshman seminar, her favorite class. Beth and seven other students accompanied their professor, a Dickens expert, to the catacombs of the rare book library to look at signed first editions of Dickens' books. The depths of the Widener library had not been exaggerated. When the money had been donated to build the impressive library (with over 50 miles of shelves), there were conditions. None of the original bricks could be removed on the façade. The second stipulation: all Harvard students were required to pass a swim test. Harry Widener drowned on the Titanic and his mother thought he would have survived if he had known how to swim. Hence her condition with the donation for the memorial library. The irony of it all? The swimming requirement ended because of the Americans with Disabilities Act, passed in 1990. My daughter Beth, a Harvard student with a severe disability, could easily pass a swim test. My limbs worked fine, but I probably couldn’t. Next: First laps with HWSD! (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.)
On my second day in Cambridge, I answered an ad from an upperclass student who needed a part-time personal care assistant (PCA). I decided my main job would have less responsibility than my earlier group home jobs, so I dropped off my resume at the Harvard Coop bookstore. Out of my comfort zone, I also didn’t have internet access, with no laptop or smart phone. I dropped by the Harvard Information Center in the Holyoke Center Arcade to check my email on one of their free computers. My third day, a young woman in a motorized scooter interviewed me briefly. First thing on the fourth day, I started the PCA job. I drove to a dorm at the Quadrangle (called the ‘Quad’) north of the main campus. Driving instead of walking turned out to be a terrible idea. Parking required circling streets around my destination for a long time to find an open spot. My new job involved a long, complicated morning routine. The fifth day in Cambridge, I left the car parked by my apartment. During inclement weather, the parking situation turned from stressful to impossible. For that reason, I walked almost everywhere regardless of the forecast, including the half hour each way to and from the Quad in the morning. I stopped back at the Coop employment office to remind the director about my application and management experience. The sixth day, the Harvard bookstore called for an interview, and on the seventh, I filled out employment papers. The bookstore was an historic co-op that paid rebates to students, which evolved into the official common name, The Coop. I worked full-time from 2 to 10 p.m. in textbooks. With the addition of my morning PCA job, I rarely saw my roommate and spent little time at the apartment during the day. When I did, I usually stayed in my bedroom with the door closed, reading books from the public library. I felt out of place in the dingy apartment. I saw Beth often during the first orientation week, shopping with her in the Square or dropping off things she needed. She met me at the main entrance of the dorm to let me in. From there, we took the elevator to her second floor suite. She thanked me for setting up her dorm room, but didn’t give me a dorm key. And I didn’t ask for one. (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. |
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