(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
As Beth’s second year of college began, I helped her move into Pforzheimer House in the Quad where she’d live for the next three years. The irony of a quad (quadriplegic) living in the Quad did not escape us. My trek to the basement storage room to uncover her belongings proved dangerous. A few months before, I could reach everything in the room. Since then, students packed the entire room to the ceiling. I climbed shaky heaps and shifted furniture. A student helped me grab the heavy lift chair off the floor and over more piles. I was lucky to recover Beth’s things undamaged. In her second floor dorm room, I hung Maria’s sunflower quilt on the wall from an old-fashioned picture rail molding. I stocked Beth’s mini fridge and bought boxes of Cheez-its. She shared a three bedroom, one bath suite with two quiet friends, both future doctors with pre-med majors. They studied most of the time, like she did. I slept on her futon for two nights until a sad drive transported me away from Beth. I should have been grateful that she no longer needed me close by, but the separation hurt. If I lived alone near Harvard for another school year and worked three jobs, sharing a dingy apartment would not be fun. Even so, I wished I could be in two places at once. With no assistant or mom down the street, Beth selected biology as her major, a concentration in Harvard-speak, and spent part of her days in the science labs with ongoing physical challenges with the equipment. She usually chose to wheel the mile to and from her labs and classes. She led conference calls for the National Youth Leadership Network, in addition to mentoring. Every Friday, she rode the subway into Boston. “I directed a volunteer program that mentored students in special education classrooms in Boston Public,” Beth said. She also expanded the program to a second school. “We visited classrooms every Friday and took the students on field trips.” Beth depended on the early morning shuttle to get to swim practice, with over two miles between her dorm and the pool. She operated the pool’s chair lift independently to get in and out of the water. It was her first year on the roster of the Harvard Women's Swimming and Diving team. She entered the locked varsity locker room by pressing numbers on a keypad. Easy, compared to handling the heavy doors of the building. She found signs and little gifts at her assigned locker from her secret sis. One morning, she had a new adhesive hook near her locker for her towel, since she couldn’t reach the high hooks. She no longer had to leave her towel at the bottom of her locker. Strong team bonds formed a community that depended on each other. “I made amazing friendships,” Beth said. She joined the rest of the team for scheduled workouts in a weight room. She knew what to do. Coach Peggy had created a personalized workout for her on laminated flip cards. Beth figured out how to hold traditional weights with uncooperative hands, and used stretch cords with loops for handles and heavy medicine balls. The team often swam after the weight room. Nothing if not persistent, Beth put on and positioned her swim cap, by herself. . . . After three years of trying and failing to achieve the task.
10 Comments
8/9/2018 07:35:42 pm
We love disabled humor. People that take their disability too seriously get on our nerves.
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8/12/2018 04:30:26 pm
Yes, humor is so necessary in our time with a disability (and without a disability, too). I love your phrase, independent life is “a constant exercise of hellbent perseverance!”
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Jill Howard
8/10/2018 08:56:56 am
I only feel inspired and humbled right now. Beth is amazing!
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"Since then, students packed the entire room to the ceiling. I climbed shaky heaps and shifted furniture."
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8/12/2018 04:51:58 pm
Amy, I love your phrase about moms pulling out all the stops. And I would do it all over again! I’m so grateful to be a mom.
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It's always good to be paired with people with similar habits - like being studies! I'm glad that Beth made some amazing friendships. It's good to be surrounded by people who encourage you to be your best.
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8/12/2018 05:01:27 pm
I wholeheartedly agree, Nancy! A supportive community is valuable. Thanks for being part of mine!
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Esther Merves
8/11/2018 03:59:10 pm
Another amazing installment in this story.
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8/12/2018 05:22:07 pm
Thank you, Esther! So nice to catch up with you in DC last week!
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