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.)
The autumn months turned into a strange and lonely time for me. Every morning, I woke up early in a cramped apartment and made oatmeal. I hiked the half hour to my personal care assistant job, rain or shine. I memorized the routine and my role in it. I tried to avoid impatient reminders from the upperclass student if I paused too long.
After my morning job, I had about four hours free.
Anything Beth needed as she started her freshman year of college was my priority. I helped her pick up medical supplies in the mailroom. I took her wheelchair to get the bearings replaced, while she used an old back-up chair. I bought snacks for her or groceries for me, or carried my dirty clothes to a laundromat. (She still wouldn't let me do her laundry.) I usually stayed in Harvard Square in-between my jobs. I drank tea, read, and wrote, alone with a constant tension headache. Nothing made it completely go away, but many things aggravated it. My goal was to keep it at a lower level and avoid pain spikes.
At 2 pm, I started second shift at the Harvard Coop. The crowds in the textbook department thinned out as the semester progressed, so my hours dropped to seven a day, five days a week. I stocked shelves and sent emails about ordered books. One evening, I recognized Wallace Shawn who played Vizzini in the classic, The Princess Bride. The movie had played more than a few times during popcorn parties at our home in Ohio. I also chatted with actress Sharon Stone.
Coop employees often talked about frequent celebrity sightings.
During my break, I sat outside in nice weather to eat my peanut butter sandwich, people watching and listening to talented street musicians. I eavesdropped on tourist conversations and made a game out of guessing the languages they spoke. This carried over to my work hours at the Coop, where I sometimes asked customers where they were from.
At 9 p.m., I joined the line waiting to punch out before I trekked past Beth’s dorm to my apartment, a half an hour walk. I called John, Ben, Maria, Beth, or my parents on my walk home. I carried pepper spray and a whistle.
Alone on dark Cambridge streets, I felt surprisingly safe with plenty of people all around.
Each night, I poured a bowl of cereal or heated up a can of soup before showering and sleeping, with the notable exception of Friday evenings. To usher in the weekend, I stopped at CVS after work to buy a pint of Ben and Jerry's frozen yogurt, either half-baked or cherry garcia. A difficult decision. I always had good intentions of not eating it all at once. ;-)
Next: A Big City Scam!
Our story continues from the moment in my first blog post when Beth tells me that everything will be okay. The Jaws of Life frees her from the car. She is rushed to a helicopter, blades spinning.
“I was, strangely, very calm,” Beth wrote in a school essay. “A nurse told me I was in shock. The doctors stuck many needles in me during the helicopter flight that seemed to last only a minute. I found out later that these were high doses of medicine that slows the chain reaction of nerve damage. I landed at St. Vincent hospital in Toledo."
"I was taken to an exam room and they cut off my clothes. They jokingly asked me if those were my favorite jeans, and of course, they were. When I was taken to a room in intensive care, my dad asked me if I wanted to know what the doctors had just told him minutes before: I was paralyzed from the chest down. I believed it, but it did not scare me.”
I was scared enough for both of us. The single tragedy of not walking spiraled out of control with shattered neck bones, surgeries, a cut spinal cord, paralyzed organs, and serious health risks of quadriplegia. I waited on edge for her optimism to crash. I felt like nothing would ever be okay again.
Beth's morphine haze faded as we prepared to leave intensive care for rehab, ten days after the accident. Her experience continued to be different from mine.
"Accepting my new disability never was a real issue for me. The issue was what needed to be done next."
My daughter's disability was entirely my fault.
All the things that a mom should do? I failed at the most important one, to keep my child safe. Beth was fourteen years old when I fell asleep at the wheel. She watched the car flip three times and land upside-down in a dark Ohio field.
Unable to move on a bed of glass, Beth reassured me, saying, "I'm okay. Everything will be okay."
And it was. Eventually. In time.
I wish I had known that at the beginning. Despite my life's work with disability, I could only see everything that she had lost. Because of me.
At first, I thought that Beth would be limited by her spinal cord injury. Today, I am happy to have been wrong.
This new blog will share the highlights of an amazing journey. I hope you will come along!
A mom with a story
to share about injuries that never heal and fortunate accidents. About guilt, disability, perspectives, and unexpected adventure.