(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!
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(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! (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! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
I transferred to the Coop clothing department from textbooks. Everyone I worked with was under-employed and many had more than one college degree. That set the stage for interesting philosophy and political debates while we folded and refolded endless Harvard sweatshirts for big displays. I had friends at the Coop, but no close friends. Everyone Beth and I met had a story. Harvard students stood out in one way or another in addition to strong academics. With the Massachusetts Institute of Technology (MIT) down the street, a freshman joke claimed that MIT students were smart but Harvard students were interesting. Cambridge was nothing if not interesting. I grew up near Cleveland in Lorain, Ohio, the International City. Many cultures had settled in Lorain, along with some of my ancestors, drawn by the jobs at the steel mill and shipyards. Cambridge beat Lorain in diversity hands down. My co-workers hailed from India, Germany, Iran, Russia, Kenya, Ireland, Puerto Rico, Jamaica, and more. For the first time in my life, I numbered among the distinct minority as a white American. One morning, I walked back to my apartment from my job in the Quad and drove the car to the grocery store and laundromat before my shift at the Coop. Running short on time, I parked on the outskirts of Harvard Square. When my shift ended at 9 p.m., the car wasn't there. I blamed the misleading parking signs and called the police to find out where it had been towed. Not recognizing the address, I walked to the taxi line on Mass Ave. My taxi driver weaved through many dark streets as the fare ticked up to over twenty-five dollars. At the lot, I also paid the towing charge and received a hefty parking ticket. Finally behind the wheel in Beth’s blue car, I looked at a city map to figure out how to get back. I found the lot within walking distance of the Square, only a short distance northeast. Or a brief drive. I knew parking tickets translated to big bucks for the city of Cambridge, but I hadn’t realized the boon for taxi drivers as well, when they drove the long, long way to the tow lot. In the news, Christopher Reeve’s death hit me unexpectedly hard. He had been quadriplegic, a diagnosis Beth shared. A pressure sore on his back became infected and strong antibiotics no longer worked for him after nine years of frequent health issues with a high spinal cord injury. John and I carried the Reeve Foundation's Superman tags and supported the nonprofit’s research and resources. The message of hope on the tags said, “Go Forward.” We mourned Reeve’s passing, a grim reminder of the risks of quadriplegia. . . . And I bought more antibiotic cream to treat the leg and foot abrasions Beth acquired from swimming. Next: A Boston Thanksgiving! (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. |
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