(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.
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(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.) I carried my duffel bag up crumbling concrete steps to the dirty front door of a shabby apartment building in Cambridge, Massachusetts. My new roommate Janet greeted me with a residential parking permit for Beth’s car. Without it, parking cost a fortune. Janet led me through the entryway to a dilapidated apartment. The slanted wood floor creaked loudly as I crossed the tiny living room. Wall registers rattled and clanked. The kitchen consisted of a sliver of space with a metal shelving unit for food instead of cupboards. I placed my duffel on the worn wood floor of my small, empty, dark bedroom with no ceiling light. The cheap mattress and frame I ordered online would be delivered the next day, so Janet’s couch would be my bed the first night. A printed Google map led me to Target to buy food, bedding, and an inexpensive lamp. I missed a turn on the way back and inadvertently explored the curving streets of Somerville. My sense of direction failed me. In the dark, I searched for the few street names I recognized, or a public place to ask for directions that didn’t look too scary. When I finally arrived back at Janet’s, I put oatmeal, cereal, soup, peanut butter, whole wheat bread, bananas, and apples on the top metal shelf in the kitchen. The fridge door held my yogurt and milk. That night, I tossed and turned on Janet’s couch until the sun rose. The morning after move-in day, our second day in Cambridge, I carried Target bags with Cheez-its and laundry soap to Beth’s dorm. A brisk twelve-minute walk away. At Harvard’s computer center, she bought her first Apple computer with the student discount. On Massachusetts Avenue, called ‘Mass Ave’ by locals, she picked out a futon chair that converted into a single mattress for the suite’s common room. Beth decided on her own to test herself and handle all aspects of personal care by herself, even after Rakhi moved in that day. Consequently, Rakhi’s job description changed from personal care assistant (PCA) to simply a wonderful friend. Independence with a mostly complete C6-7 spinal cord injury required exceptional patience and significantly more time. “I tried to see how far I could go and I continually tried to do more on my own,” Beth said. “It took a little over four years (after my injury). The doctors told me they had never seen anyone with my type of injury become completely independent.” (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.)
It seemed like a good plan. While Beth started her freshman year at Harvard, I would live off-campus for transition support. The summer rushed by and I still needed to find a place to stay. Rundown studio apartments in Cambridge started at about $1,400 a month in 2004, so I decided to rent a room instead. I found a rare bargain several blocks from Harvard: one of two bedrooms in a tiny apartment for $600 a month. I’d share the space with a young woman, a church organist, from Ohio. Small world. Late in August, Beth and her close friends met for breakfast on the day Lizzy left for college. They each chose different schools in three states. Her friends wore rings engraved with the word HOPE, the same one they gave Beth after her injury. The same one she never took off. Ellen and Lizzy had the same week off for spring break and planned to fly to Boston for their first visit to Harvard. They hugged and said teary goodbyes in the Burger King parking lot. I’d miss her friends, too, and their gift of contagious laughter. Beth wasn’t the only one saying sad goodbyes to friends and family. We prepared the best we could for our separate adventures. I anticipated what she would need and made piles along the wall in our dining room. John doubted it would all fit in Beth’s car. He was right, but the items at the top of my list made the cut. I put an old backup wheelchair in the car topper and stuffed pliable bags of towels and sheets around it. I checked my list twice, three times. A reassuring task on the brink of a college experience out of my control. (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.)
Later in June, the Greece buzz abruptly fizzled. A phone call from the head of U.S. Paralympics overruled the earlier plans at Trials. He told Beth all swimmers must stay the entire month of September in Athens. No exceptions. She handed me the phone at my request and I attempted to reason with him. When I hung up the phone, we hugged and cried. If only I could make things better, a wish I had made many times. The phone call triggered a decision Beth had made months before. She would not wait a full school year to start college at Harvard, so she immediately gave up her slot on the Athens team to someone else. The fun preparations ended, replaced with the chore of telling family, friends, and reporters the bad news. We tried to focus on the silver lining. Now, she could start at Harvard on time and attend freshman orientation. Discouraged, Beth followed Peggy’s advice and set goals for the next four years. The plan included staying on the U.S. National Team, attending at least three Paralympic meets a year, and swimming on her own at Harvard, following Peggy’s workouts. Beth didn’t expect to practice with the college’s swim team. In four years, she did expect to master the forward freestyle and achieve an out of reach American Record in the 50 free, the hardest in the S3 women’s classification. Beth’s detailed plan led up to an ultimate goal: the 2008 Paralympics in China as a member of Team USA. The Beijing Paralympics would take place in September, a few months after her graduation from Harvard. She would attend graduate school for medical research or law. “I’ve already decided to postpone grad school for a year,” Beth told a reporter in 2004. “Nothing’s going to stop me this time. I want to medal in China.” (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.)
The next health emergency gave us no warning. Thankfully, I wasn’t working at the group home on an early March morning when Beth woke up very ill. I drove her directly to the emergency room at St. Vincent in Toledo. I cut time off the hour drive, despite the morning rush hour. A doctor quickly admitted her to intensive care. After numerous tests, Beth acquired the diagnosis of peritonitis, a dangerous infection. The urologist who performed her bladder surgery told us they found extra fluid in the abdomen. The small bladder tear along a surgery seam would heal on its own if they kept the bladder empty. The nurses also monitored her closely for sepsis—an even more frightening and potentially fatal condition. With it, the immune system went awry, spreading inflammation that could lead to organ damage, septic shock, and death. I learned later that sepsis is one of the leading causes of death for quadriplegics. I stayed glued to Beth’s side in intensive care. I shared her alarm with the persistent high fever and strong abdominal pain, especially since she had limited sensation in her trunk. She never asked to look at her homework in the hospital and I never suggested it. I was polite but very involved with the medical staff. And I could be a little demanding at the nurse’s station when Beth needed something. With my sick daughter, I put on a brave face to reassure and comfort. Even though we both were frightened through the first days in intensive care with no improvement. To keep things running at the group home, I made quick phone calls in the hallway where I met a dad soothing a baby with a failing heart, a mom entertaining her toddler with a brain tumor, and a grandma weeping about a terminal diagnosis. I didn’t share the details of those encounters with Beth. She very gradually felt better and her vitals improved. When I drove her home after a scary week in the hospital, she didn’t feel invincible, so John Mayer sang her favorite song by himself from the CD player. We arrived in Tiffin bone-tired with strong antibiotics. And a new perspective. No longer a question, Beth and I wholeheartedly agreed that the seven hundred miles between Tiffin, Ohio and Harvard was definitely much too far for us to be separated in the fall. She made the decision to live in a dorm her freshman year while I stayed off-campus. We’d be in the same city, but I wouldn’t be her personal care assistant. I’d help set up her dorm room and be there for transition support. That was fine with me. There was no way I could drop her off at a dorm in Massachusetts and return to Ohio. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The annual New Year’s Eve bash with Ellen and Lizzy involved more fondue and more treats. How easily the seventeen-year-olds laughed while watching the Grinch movie. Listening to them, there was no way of knowing that one of them had a severe physical disability. John and I toasted the New Year with gratitude and discussed how Beth’s injury had never been a tragedy—for her. We believed she had a better than average chance to contribute and be happy. My disability-related worries looped through the days. They could be condensed down to health risks and one big question: What kind of welcome would a young quad receive from a superficial world? I bought Beth a Harvard sweatshirt online for a Christmas gift. When she wore it to school in January, her classmates and teachers found out about her college choice, if they asked. Beth asked to attend Harvard’s admitted students weekend, even though she had already accepted. I agreed and scheduled meetings at the Harvard disability services office to figure out exactly how it would work. I had already booked flights to Minneapolis for the US Paralympic Trials in April, so I changed our flights home from Trials to take us directly to Boston for the Harvard weekend. Beth’s senior spring filled up our calendar with exciting trips and important events. As the end of the high school swim season approached, Peggy adjusted the specifics of training over weeks to promote fast times at the final meets. (‘Tapering’ workouts.) The girls stopped shaving their legs. Some practices added ankle weights. One evening at the YMCA, Beth wore street clothes and shoes in the water along with the rest of the team. Then, the night before the Sectional Championship Meet, the girls shaved their legs. The boys on the team chose to shave their heads in solidarity. All of this was new to us, as well as the excitement to follow. Next: District Championships! |
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