 (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.”
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(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.) 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!  |
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