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 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!
ThAnK YoU FOR FOLLOWING MY BLOG! SOME OF YOU HAVE ASKED HOW TO GET A SIGNED BOOK: YOU ARE THE FIRST TO KNOW ABOUT EARLY ACCESS TO SIGNED COPIES OF MY NEW MEMOIR, STRUGGLING WITH SERENDIPITY! I am so grateful for your support and encouragement since I started sharing our story in this blog three years ago!
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!
Beth's right elbow swelled and hurt for the first time. Initially, her doctor and the team’s athletic trainers recommended compression wraps and anti-inflammatory meds.
She never stopped swimming, feeling healthy and stronger than ever, except for the elbow.
The college competition season approached. One of Beth’s friends on the U.S. Paralympics National Team also swam on the Yale team and successfully fought to compete at all meets, home and away. In contrast, Beth appreciated the time she gained by not traveling with the team.
“The trips sounded exciting but staying back gave me more time for school work and volunteer activities,” Beth said. She sent swim workouts to the U.S. Paralympic National Team manager and reported her whereabouts to the United States Anti-Doping Agency for random drug-testing.
Little to no social activities. Yet.
Often the last to leave the varsity locker room after a practice, with her hair wet, she wheeled up the hill at the entrance to the sidewalk on North Harvard Street. She wheeled toward the Square to her classes. On frigid days, the hair below her hat freeze-dried. The curb cuts on the bridge over the Charles River had steep inclines, impossible in any kind of wheelchair. Unwilling to ask for help from one of the endless pedestrians, Beth wheeled in the street alongside the curb instead, sharing a lane with nonstop cars while drivers turned aggressively in front or behind her.
Across the river, Beth often stopped at Dunkin’ Donuts for a soy latte and a whole grain bagel with blueberry cream cheese. Peet’s Coffee also was a favorite a little farther down the street.
One morning at the Kennedy School of Government, she rode the elevator with Madeleine Albright, the first woman Secretary of State.
Beth’s largest class, Justice, attracted hundreds of students to Sanders, my favorite theatre. Dr. Michael Sandel led lively discussions on all aspects of justice that kept students engaged—and the public as well. Harvard aired Justice online, for free.
Next: Sisters in Cambridge!
My oldest daughter Maria stuck to her plan to relocate to Boston when she graduated from Heidelberg. She hustled with a heavy class load to finish a double major in three and a half years. Before long, two of our three children would be in Massachusetts.
John agreed with me that we could live there, too.
He knew how much I wanted to be with our kids. He started his thirtieth year of teaching in Tiffin, his last before retiring in Ohio. We planned to sell our house in the spring and move that summer. John decided he’d teach for a few more years in the Boston area because of the much higher cost of living there.
At Harvard, Beth swam six times a week her junior year, and rode the bus at 6 a.m. with her teammates who lived in the Quad.
She often arrived at Blodgett in sweatpants, with a swimsuit underneath that she’d pulled on before getting out of bed. The team stretched together on deck before getting in the water. Skipping practice? Not an option. When the rest of the team swam doubles, a second practice on the same day, Beth stayed with one.
Coaches added a snorkel to the modified swim paddles and floats in Beth’s equipment bag. The snorkel eliminated the breathing challenges of her forward strokes. During hour and a half workouts, she typically swam about a hundred laps of 25 yards each.
During peak times in her training cycles, workouts hit two hours and 3,000 yards, almost two miles.
“My undergrad was devoted to swimming and health policy,” Beth wrote. “It was a struggle sometimes to be independent and keep up with the work, but I grew a lot during that time. I learned how to make new friends, to manage my disability, and to advocate for myself—not to mention becoming a much stronger swimmer. I like to joke that I spend more time in the pool than I do in class. I love this pool!”
The locker room had a new plastic shower chair Beth finally requested. From a sitting position in her wheelchair, taking off a wet swimsuit in the varsity locker room required patience. I suggested suits one size bigger, but she liked them tight.
Resolve and repetition gradually made dressing in her wheelchair easier, from button down sweaters to the zipper on her skinny jeans.
Next: My New Job!
Back at Harvard for the start of Beth’s junior year, I carried her chair and other items up from the basement storage room. I set up her dorm room before I drove back to Tiffin. She changed her concentration from biology to health care policy with the goal of attending law school. Beth told a reporter about her DC summer and why she changed her major.
“I really fell in love with the policy side of things. After the internship, there was an opening in Senator Kerry’s Boston office to work specifically on disability issues with one of his staffers. They invited me to do that. So, throughout my entire school year I worked in his Boston office. It’s completely different, because it’s much more focused on his constituents. But I really loved that, because you get to talk to people on an individual basis.”
Beth rode the T by herself from Harvard Square to the Senator’s office near the Massachusetts State House. One day a week, sometimes two. She stayed on the subway and passed the T stop closest to the Senator’s office to avoid a steep hill. She planned for extra time to wheel the additional distance back to the office, avoiding the inaccessible T stops. She signed up for text alerts to get advance notice when elevators broke down.
“When I answered phone calls, I recognized a desperation in their voices as they reached out to their Senator, who was all too often their last hope in solving their issues,” Beth said. “It was rewarding to resolve specific disability-related complaints, but some we could not help.”
She stayed in touch with Mary in the DC office and joined the Senator and staff for events, including a campaign rally at Boston’s Faneuil Hall for Deval Patrick, soon-to-be Governor of Massachusetts.
Coffee, Beth’s new habit, stoked long days of classes and homework, swim practice and meets, plus volunteering for KSNAP and Senator Kerry.
Beth’s new major allowed her to create and follow an individualized program. She selected classes relating to health care, a wide field of study including economics, regulations, inequalities, public opinion, politics, quality control, and buzzwords like adverse selection and moral hazard. She looked forward to classes at two graduate schools.
“I explored health care policy and disability issues with courses at Harvard’s Kennedy School and Law School.” They were her favorite classes.
Next: A Big Decision!
I have exciting news to share: I signed a publishing contract for my memoir, Struggling with Serendipity, with a traditional publisher (not self-publishing)! I wanted my awesome blog followers to be among the first to know, before I post the news on Facebook and Twitter. Thanks so much for your support! The next segment in my story follows.
During John’s spring break, we drove twelve hours from Tiffin, Ohio to Cambridge, Massachusetts, taking Route 90 most of the way. It was worth it to spend a few days with Beth. A decade earlier, the one-hour drive from Tiffin to Vermilion seemed long, but no more.
I bought tickets for our first Red Sox game at Fenway Park with John and Beth.
The huge crowd at the stadium an hour before the game surprised me. We lined up by the field to meet some of the players. Many lingered to talk to the smiling college student in a wheelchair with the navy blue Red Sox cap.
The stadium had old-fashioned charm. The homerun fence was painted bright green: the green monster. With every seat in the stadium taken, many others paid to stand to watch the game. The enthusiastic, rowdy crowd reacted to every play, something I’d never seen before. My first experience with intense Boston sports fans, but not my last. Bostonians are known for taking their professional sports teams seriously, a fact supported by many winning teams.
We weren’t prepared for the cool weather, so I signed up for a credit card to get a free Red Sox blanket. I wrapped it around my daughter’s shoulders (and later cancelled the card).
It was parent’s week at Harvard, so John and I visited Beth’s class on Ethics, Biotechnology, and the Future of Human Nature. Dr. James Watson, the former head of the Human Genome Project who discovered the structure of DNA with Dr. Francis Crick, was the guest speaker that day. His controversial affinity for eugenics created a lively discussion with the class.
the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics. Developed largely by Francis Galton as a method of improving the human race, it fell into disfavor only after the perversion of its doctrines by the Nazis.
Dr. Watson encouraged the Harvard students to have many children.
Beth joined the class debate on the potential of stem cells and the controversy over discarded embryos for research. Though never focused on a cure for her disability, she supported medical research. An upcoming vote in Congress in the summer of 2006 heated up the debate across the country over federal funding for stem cell research. We didn't know that Beth would be in the middle of it.
Next: A Life-Changing Experience!
As a new year began, I said goodbye to everyone at the group home and gratefully turned in my keys. I gave myself the gift of time to live in the moment, connect with loved ones, and take better care of myself. I aimed for the lower headache level I had before the manager job.
A few weeks later, I was invited to a birthday party at the group home. It was good to see the residents again, but it also was nice to leave, with no responsibility for their lives. Not long after, the resident at the group home with the feeding tube passed away and I attended his funeral. I cried during his sister’s eulogy as she described his joyful greeting when she visited him, something I had the privilege to witness.
From our home in Ohio, I kept in touch with Beth while she finished her first official season with the Harvard Women’s Swimming and Diving (HWSD) team.
Harvard was famous for extraordinary professional connections. Beth found that to be true, but she appreciated other associations as well. For her twentieth birthday in April, the college’s shuttle bus drivers pitched in to surprise her with a bouquet of flowers. Even at 6 a.m. on the way to the pool, Beth conversed pleasantly with the drivers and always thanked them. She became friends with the bus dispatcher, Bonnie, who also used a wheelchair. At the dispatcher’s request, Beth spoke at two Boston schools. Bonnie attended HWSD home meets with her young daughters, and the girls asked Beth to autograph their meet programs.
In the spring, she missed college classes for a week to fly to Antwerp, Belgium with the U.S. Paralympics National Team. She earned four first-place finishes. Her hometown coach traveled with the team as a new U.S. Paralympics coach.
“Coach Peggy has helped me get better with almost every meet,” Beth said. ”She’s been with me every step of the way.”
When a riot broke out in Antwerp, the coaches rushed to gather up the sightseeing swimmers. Everyone was fine. Some even found inexpensive treasures in the diamond capital of the world. My daughter’s only purchase was a gift for her sister Maria, a ring with a small diamond, similar to the HOPE ring.
Beth had worn hers every day since her injury.
Engraved with the word HOPE, Beth’s ring looked exactly like the ones her best friends owned. The rings were made after the car accident six years before, and continued to be a meaningful reminder of the love of good friends.
Next: First Time at Fenway!
I loved being home in Ohio, but the thought of Beth in Massachusetts made me sad, even though I knew she could handle living independently with her disability. I missed her.
We had been a team for four years.
I hit a snag with an incompetent clerk and a new prescription for her medical supplies. With a fast-dwindling supply, I called the company again. I made the effort to be nice—at least the first several calls. Then, I asked to speak to the clerk’s supervisor and she refused. I lost my temper and started over with another supply company, finally arranging an overnight delivery to Beth at our expense at the last minute.
My sadness amplified the normal day-to-day stress of my job. With elevated headache pain, I had trouble sleeping at the group home. I barreled through more weeks with unpaid overtime hours. Often on the verge of tears, I talked to John and let him convince me the stress of the manager job wasn't worth the money.
Looking back, I could have ridden it out.
Holidays were always the hardest time of the year to staff group homes. So instead of quitting my manager job in November, before Thanksgiving and Christmas, I decided to be considerate of the residents and other staff by leaving early in the New Year, almost three months away. I turned in my notice, relieved the end was in sight, and focused on setting things in order for the next manager.
I talked to Beth on the phone after she finished a 2,400-yard workout in one practice: 96 lengths in the 25-yard pool, almost a mile and a half.
Swimming that distance had not been possible a year before. As college competitions began, Beth would compete at all home meets at Blodgett pool as an official member of the Harvard Women’s Swimming and Diving (HWSD) team. Always too-busy, she appreciated the extra time she would gain by not traveling to away meets with the team.
I wished I could have been there for the first home meet of the season in mid-November. Beth dropped fifteen seconds in the 100 free compared to her first Harvard meet ten months before! And reset two of her short course American Records.
“She's probably one of the easiest people to coach in the sense that she always has a smile on her face, she's got a great positive attitude, and she's willing to try anything,” HWSD Coach Morawski said. “And she just kept getting faster and faster.”
“For her to make that commitment to coach me and, this year I’m on the roster, is really important,” Beth said. “It’s been great. I love it!”
Next: Together in Minneapolis!
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
As Beth’s sophomore year at Harvard began, we lived far apart for the first time. I bridged the 725 miles between Cambridge, Massachusetts and Tiffin, Ohio with phone calls, emails, and care packages.
I also tried to help from a distance, to free up at least a little of Beth’s time for more important things, even though we both knew she could do everything she needed to by herself.
I made travel plans for upcoming Paralympic swim meets. I responded to requests for details for newspaper articles and updated her resume for a reporter. I started a Challenged Athletes travel grant application for her and she finished it, adding her personal goals and the essay. I ordered medical supplies and wheel bearings, When she needed a new bag for the back of the wheelchair, I researched options, emailed her the best ones, and bought the one she selected.
Beth took over repairs for her wheelchair, scheduling a service to come to her dorm only after the intermittent catching of one wheel progressed to a consistent and frustrating obstacle. Her dirty laundry piled up until she couldn’t find clean clothes to wear.
Her priorities filled her days: swim training, classes, homework, volunteering, mentoring—and sleep.
Grateful to be home, I reconnected with the rest of my family. John and I visited Ben in Columbus. John taught 3rd graders while Maria attended Heidelberg College full-time, worked at a video store, and led college tours, in addition to babysitting. She sang in the college choir and show choir. Maria also solidified her plan to move to the Boston area after she graduated early, in December of the following year. She had a double major in elementary education and special ed. Always busy, she wasn’t home much except to sleep, but we found times to meet at Taco Bell to catch up over burritos and sodas.
I loved my suddenly wide-open life, but I also felt the need to get a job to help with finances, even though John never pushed me to work outside the home.
Without a college degree and with little opportunity in our small town, I had few options. Any minimum wage job would limit me to a very low income. I thought about working at the Tiffin Center again, a state job and my highest wage option. However, John might retire after the next school year, which meant we might relocate. It wasn’t fair to the residents to purposely work at the center for a short time. Plus, the thought of starting over again in direct care in the most difficult module was daunting.
Working at a group home could be difficult, too, but seemed a bit easier and more flexible than the Tiffin Center. I decided to bite the bullet and manage another group home for the same agency I worked for earlier. Before accepting, I toured the Tiffin home, a modern duplex in good condition. The physical environment was a big improvement over the dilapidated house I had managed before. I said yes.
I wish I had said no.
(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.
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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