Beth’s senior year at Harvard created a mosaic of color squares on her computer’s calendar. Orange for classes, red for assignment deadlines, yellow for disability work, blue for swim workouts, purple for fun, and green for everything else, including volunteering and swim meets.
Beth made a concerted effort to increase the purple blocks on her calendar.
She participated in more college activities, most for the first time, including the annual ‘80s Dance, ‘90s Dance, A Cappella Concert, and Comedy Show. She also cheered for her friend Brittany during a rugby game.
“Brittany got me out of my shell during my senior year,” Beth said. “Before then, I hardly ever went out socially.”
Early one weekend morning after the T stopped running, Beth, Brittany, and three friends hailed a taxi in Boston. The driver said only four of them could ride at one time. Brittany creatively insisted Beth needed to sit on someone’s lap because of her disability.
The driver kept his thoughts to himself as all five girls rode in the taxi to Harvard.
With a full load of classes, Beth prioritized her homework, kept up on writing assignments, and saved books to read later. She no longer tried to read every word. Graduate school applications also required chunks of time. She applied to four law schools and a doctorate program at Harvard’s School of Public Health.
❤ Fun fact: Years later, Beth was a bridesmaid in Brittany’s wedding. This May (2019), Brittany will be a bridesmaid in Beth’s wedding!
Exciting book news: my Washington DC, Ohio, and Boston events are set! bit.ly/mybooktour Signed copies are available at bit.ly/memoiroffer. Amazon has the paperback and kindle e-book for pre-order, with both coming very soon!
John and I traveled for a day trip to Newport, Rhode Island for the first time. The landscape from the cliff walk brought the fjords of Norway to mind, a fusion of rippling water and majestic rock, oblivious to the passage of time.
Ben applied to several graduate schools across the country for a master’s program in literature. He decided to attend wherever he received the most financial aid. With acceptances in hand, Brandeis University won in Waltham, Massachusetts—the same city where John and I lived.
All three of my kids would live close to us for the next school year.
My doctor referred me to a specialist when the headache spiked, and my left arm prickled and hurt. I made an appointment with a physiatrist, a specialist in muscles and rehabilitation. Dr. Ariana Vora at Wellesley’s Spaulding office diagnosed my headache as cervicogenic: pain referred to the head from the cervical spine or soft tissues (or both) within the neck. Complicated by displaced jaw joints, fibromyalgia, and advanced arthritis. A body scan revealed an my unusually high level of arthritis literally everywhere. My neck, left elbow, right knee, and hands bothered me most. I was forty-nine years old, going on ninety.
Dr. Vora ordered physical and occupational therapy to focus on my neck muscles in constant spasm. At one session, a patient complained loudly about over-the-counter medicine that completely eliminated her wrist pain because she hated taking pills. Whining about the absence of pain? I’d be happy if mine dropped from constant to sporadic. My physical therapist with daily headaches rolled her eyes at me in solidarity. I tried acupuncture, facet joint injections, and later, botox shots.
I also drove to a shop in Brookline where an elderly Chinese man listened to the heartbeat in my wrist and sold me bitter, exotic herbs. Once.
Daily exercise, meditating, and holistic approaches tamped down the headache to a lower base level. I appreciated my evolution of sorts: to be able to make time for me and not feel guilty about it. I valued myself more. I no longer thought of myself as weak and flawed for not getting all my ducks in a row.
We all lived in the same messy pond, without perfection.
I tried not to anticipate or worry about the next headache flare. I finally absorbed the idea of taking care of myself first which allowed me to give to others in a better way. I made extra efforts to connect with friends and family and started a gratitude journal. I had so much to be thankful for.
Next: Beth's mosaic of squares!
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One fall morning, Beth wheeled across the pool deck at Blodgett, and the Harvard men’s coach led his team in applause for her Rio medals. She swam six days a week in and out of the HWSD season during her senior year.
Coaches planned her training cycles to build up to her most important swim meet to date, the Paralympic Trials in April.
Occasionally, I met Beth in the Blodgett lobby, helped her over the alarmingly-inaccessible bridge to Harvard Square, and bought us brunch, our favorite meal of the day. I encouraged her to use the bus after practice more often, but she didn’t.
Maria taught five preschoolers with multiple disabilities in the Cambridge Public Schools.
She started the classroom with two full-time teacher’s aides, including one with a master’s degree. In the Boston area, many adults with college degrees settled for underemployment to obtain health insurance.
One of Maria’s students with complex medical needs moved away from Cambridge, a sanctuary city, to Boston with her mom, an illegal immigrant. I worried with Maria about their deportation to a country with subpar children’s services. I volunteered in her classroom a few times and helped with field trips.
Maria's enthusiasm and compassion created a safe space for the children, who progressed at a surprising pace.
Maria created and followed an intense schedule in 15-minute increments to allow her and her teacher aides to maximize instructional time. She had high expectations and energy. I remember thinking that the residents at my old jobs would benefit from Maria’s level of passion. Sadly, staff tended to have low expectations at too many institutions and group homes.
I watched Maria work enthusiastically with a boy speaking his first words. Later, she sat quietly on the floor, blocking the only exit out of a padded play space where a little girl threw a major tantrum. The child tried to get Maria’s attention in negative ways. My daughter ignored the screaming. I thought, “She’ll be a great mom someday.”
During a musical performance for parents, all the children, nonverbal and otherwise, played a role. I sat on the stage next to a girl’s tiny wheelchair and held a toggle switch for her to push. The switch played a recorded phrase. The boy learning to speak wore a butterfly costume. He flapped his wings and bounced to the microphone at regular intervals to cheerfully yell, “Chomp!” It was a word he couldn’t say a few months before.
The audience loved it. I did, too.
Next: Another spike!
I'm a mom on a mission to share a message of hope for those in crisis! For signed copies of my new memoir, click BOOK, and find it on Amazon HERE. It also will be available everywhere books are sold starting April 9, 2019. Thanks! ❤ Cindy
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