(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!
4/12/2018 10:35:09 am
I'm trying to come up with the words to express how your posts affect me when I read them, Cindy. All I know is that I take a deep breath every time I start reading. And I end up with a bit of a sour stomach when I'm done. I love your writing and I love how you tell the story and THAT you're telling the story. But being a mom that never stops worrying about her single daughter and all the terrible things that could happen to her, I come away feeling sick, hopeful and inspired all at the same time. Thank you, Cindy, for sharing your amazing story of parenthood and humanity. Now excuse me while I go and get a tissue.
4/12/2018 09:01:16 pm
Wow. Thank you, Paula! Though maybe I should apologize, too, for the negative emotions the story evokes. I’m touched and humbled that it resonates so deeply with you—hope and inspiration, too. It means a great deal to me that you are following with interest and that you’re sharing with me your connection to the story. I hope our paths cross in the future! <3
Clearly, Harvard should have been located in some place like California. I sympathize with Beth's struggles in the snow and ice. I find them hard enough to take even without a wheelchair to contend with. I also completely get her insistence on self-reliance. Hard-headed is hard, but good.
4/12/2018 09:07:51 pm
Thanks for the laugh, Amy! Yes, the early settlers of our country should have landed in California first. ;-) Though Harvard would look different with palm trees. And yes, stubborn self-reliance is a very good thing!
4/13/2018 04:25:01 pm
Wow what a story. People always seem to forget about how the snow can affect someone in a wheelchair. I can understand your daughter's need to feel independent and not be helped with everything. Not exactly the same, but my mum is disabled and uses a wheelchair when she goes out but she needs to be pushed. But at home, she is very stubborn and insists on doing everything herself. I think it's actually a very good thing, unless they are trying to do too much to prove a point.
4/15/2018 12:59:31 pm
Thank you! So many of us take independence for granted, when it really is a gift!
4/15/2018 12:53:02 pm
4/15/2018 01:05:15 pm
Thanks, Nancy! I moved recently from the south and need to deal with winter weather again. Snow and ice are the worst!
4/14/2018 07:14:23 am
I struggle walking on snow so I really so admire anyone in a wheelchair who has to navigate difficult weather conditions. The snow puts a stop to almost everything here in the UK, even when there's not much of it.
4/15/2018 01:08:00 pm
Hi Jenny! I tend to hibernate in the winter and avoid the snow. Thanks for commenting!
I am always impressed by Beth's independence and inner strength. When I read about her frostbitten hands, my first thought was I never considered that. I understood too much snow would be difficult to navigate, but I never thought how it might affect her health. She is a trooper and I bet she gets it from you. I know how hard it is to write a novel (or memoir) and you persevere. Your writing is descriptive and lovely.
4/25/2018 10:32:43 am
Thank you, Val! We learned that with a spinal cord injury, it's an ongoing learning curve. I'm very grateful that Beth sees positive challenges, not negative ones!
Leave a Reply.
Sign up for my Just Keep Swimming Newsletter by typing your email address in the box. Thanks!