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!
Beth’s Harvard coach requested that she meet a little girl with a physical disability from a local club team. They swam together twice. Beth dabbled a little in coaching and talked to the girl and her mom over dinner. A Paralympic swimmer in Michigan also asked Beth to mentor a teenage girl with a new spinal cord injury. Ongoing friendships included her first mentee from Seattle who visited Harvard for a college visit almost four years after they began to exchange emails. They met face-to-face for the first time and caught up over lunch in Harvard Square.
Beth’s web of connections kept growing.
My new Massachusetts doctor sent me to chronic pain classes at the Benson-Henry Institute for Mind Body Medicine. The institute was founded by Dr. Herbert Benson, the cardiologist who wrote The Relaxation Response.
I drove east on Rt. 9 to Roxbury, a suburb of Boston. A nurse led the classes, teaching us about the science of meditation and how those who meditated regularly experienced significant health benefits. My diverse classmates experienced a wide range of medical problems. The nurse encouraged us to accept pain, the same concept that angered me when I first heard it in Ohio. Since then, I had found no cure for my headache.
I understood that resisting pain did nothing good.
Dr. Benson visited my class and spoke about pain as a benign thing, to separate it from our identities. To enable us to drain its power. To prevent pain from diminishing our experience of life. To make it an inescapable reality more than an obstacle. To make peace with multiple causes of pain, some clear and some not. I tried. I completed homework and daily meditation practice.
At our last class, we shared unanimous results. All of us improved, including me, though our actual pain levels stayed the same. What? Across the board, our minute by minute and hour by hour responses to pain improved, enabling us to cope better day to day. The class also helped me gain perspective as I met others with debilitating pain.
It could always be worse.
After Brazil, Beth flew into Boston, since our Ohio days were over. She helped me complete her new bedroom with a blue duvet cover and throw pillows. Before her senior year of college began, I often drove her to Harvard's Blodgett pool for workouts, about a half hour drive from our apartment in northwest Waltham. Maria joined Beth at the Bear Hill pool to sunbathe with books and to swim.
John’s change in jobs left us with a one-month gap in our health insurance. He bought coverage through his Ohio retirement at a reasonable cost. Against his advice, I decided to go without health insurance through August to save us several hundred dollars. As luck would have it, I couldn’t stop coughing with a persistent chest cold. I should’ve gone to the doctor. Instead, I waited another week until my new insurance started.
A bad idea.
I learned a new lesson. My lung capacity diminished with a full-blown, miserable, and intense pneumonia. For the first time, I experienced the anxiety triggered by not breathing easily. Antibiotics had no effect the first two weeks, so a lung doctor added steroids, inhalers, and a different antibiotic. I felt a little better by the end of September, in time for visitors.
Still coughing, I assumed that a month of antibiotics had eliminated the possibility of being contagious.
My parents arrived for a visit with my niece Meghan and her husband. We walked part of Boston’s Freedom Trail and rode a trolley. When others boarded a boat for a harbor cruise, I shared ice cream with my dad at Legal Seafood near a big aquarium.
Maria and Beth visited us at our Waltham apartment for fun family dinners. After the visit, my dad contracted pneumonia—probably from me. He spent a rough week in an Ohio hospital, and I felt awful about it.
My pneumonia completely cleared three months later and left me with elevated neck and head pain from the prolonged coughing.
Next: A New Treatment!
The aquatic center at the Parapan American Games, built to hold about 8,000 people, attracted capacity crowds. It was August of 2007, and Beth’s first competition in front of an enormous and enthusiastic audience. She chose the forward freestyle during free races instead of the backstroke of most of her competitors in the S3 classification.
In both the 100 and 200 free, she earned silver medals.
Beth swam the 50 free in prelims with a time five seconds slower than usual after a freak injury. She dislocated her big toe falling into the pool. She felt less discomfort than I would have in the same situation, but pain nonetheless. Beth’s body also quickly reacted with strong leg spasms that dragged her speed down during the race. Right after, the team doctor for the USA manipulated the toe back in place.
She returned to the pool that evening for finals to earn a bronze medal in the same event.
With the forward freestyle, Beth drew a breath on the right side on every other stroke, so she could see a swimmer only in the lane to her right—if they swam at a similar speed. Legs dragged behind her, as always, but after years of strengthening and positioning her trunk, her legs stayed close to the surface of the water instead of angling all the way down where they would slow her down more.
Another day, Beth’s 50 back ended unexpectedly.
Her double-arm backstroke technique continued to be faster than alternating arms. In a close race, she touched the wall before all of the rest, including the swimmer from Mexico who held the IPC World Record for the event. I wish I had been there.
During the medal ceremony, Beth wheeled on a ramp to the tallest stand. Wearing gold around her neck and holding beautiful flowers, she rode a wave of emotion and patriotism as the USA national anthem played loudly—for her. Spectators treated the swimmers like celebrities, cheering loudly when Beth gave her flower bouquet to a local girl in the stands.
“Hearing our national anthem while on the podium is something I will never forget,” Beth said. “Rio was an absolutely amazing experience.”
Next: Back to the real world!
The Parapan American Games are held once every four years. In August of 2007, the games took place in Rio de Janeiro.
That year, Brazil hosted 1,150 athletes from 25 countries.
When the team landed in Rio, security hurried them from the plane to the terminal because of gang shootings across the runways. They arrived early for swim training and to get over jet lag.
Beth’s coach, Peggy, led the U.S. Paralympics Swimming Team as Head Coach for the first time. The team of 14 swimmers voted Beth Co-Captain. Julie O’Neill, promoted to the top spot in U.S. Paralympics, told an Ohio reporter, “Beth just has a great personality. She’s dedicated, intelligent. She’s got all these pieces, and she’s one of the athletes we look to for leadership.”
“She’s an incredibly positive person,” Peggy added, “and it rubs off on people she comes in contact with.”
Peggy led team-building activities, a few repeated from Beth’s high school and SAK teams. Out of the pool, one involved dividing into groups and picking one in each to chew the most gum as quickly as possible. In the pool, Beth grabbed the ankles of a swimmer ahead of her as they raced a lap. The team played water polo in the deep end while Beth bobbed and treaded water. They also raced with funny strokes. I followed the trip in email newsletters from U.S. Paralympics. They included quotes from the athletes, including Beth.
“I am really excited about being here, and I am very honored to serve as the captain for the women’s team. It is a great learning experience for all of us.”
John and I searched for simple, sparse furnishings for our new Massachusetts apartment in many stores. I shopped with Maria, too, and we checked sales and clearance racks for good deals as always. John teased about metal shelving units in all the rooms, and made do with just one in the garage.
We displayed family pictures everywhere.
Our furniture matched for the first time, and I got a kick out of shopping for kitchen towels with a red theme. I found some with brightly-colored poppies, complimenting a set of red bowls with white polka dots.
Medication kept the lid on my depression, but failed to stop the headache. The pain level cycled, as always. with my heartbeat throbbing in my head during peak times. The base level had continued to increase very gradually since the onset. Even so, I appreciated the fact that the base level of the headache was manageable.
I walked up and down Bear Hill for exercise and helped John get his classroom ready. He had extra work to prepare to teach in a new school system in a new state. He reviewed the curriculum, all new to him. He also had to schedule and study for the teaching tests Massachusetts required, despite his National Board Certification and 30 years of experience. I debated about when to apply for a job. John suggested I postpone job applications until after the Beijing Paralympics, a year away. That was an event I wouldn’t miss, and I planned to stay in China for an extended time.
We talked to Beth on the phone from her team camp at the Olympic Training Center in Colorado as they prepared for another adventure in another country.
I shared our new Massachusetts address with family and friends. It turned out to be the wrong address. In mid-July, our new apartment waiting, John and I drove to Massachusetts from Ohio. Beth chose to stay in the Tiffin apartment by herself for less than a week, to continue swim training. I would return to Ohio in five days later. She spent time with Ellen and Lizzy. Peggy drove her to and from swim practices.
When John and I arrived at Watertown Square in a heavy car, the wrong apartment waited for us. The leasing staff apologized for their mistake and significantly dropped the rent at another, nicer complex owned by the same company. Instead of unloading the car in Watertown Square, we drove a little farther to the next suburb, Waltham. We chose an apartment with big windows at the top of Bear Hill where chipmunks played on the balcony. The downside? It extended John’s commute to work a little, and our rent would jump to the usual higher rate, over $2,000 a month, after a year. In the meantime, we could live in an upscale, fancy, sunny, spacious apartment. We called Macy’s to change the delivery address for our new mattresses and unloaded the car.
We made several phone calls to family with our correct address.
John picked out our first flat screen TV, and we set out on a mission to find the perfect sofa. We also stocked up on groceries for our empty kitchen. The second day, we perused more sofas from Dedham to Natick to Burlington. The third day, we bought the first sofa we had liked on the first day, a wine-colored reclining sectional. It would move with us three times.
I left John in Waltham without a car, but with Maria not far away. I drove back to Ohio by myself, singing with CDs most of the way. In Tiffin, Beth and I folded clothes at a laundromat and packed for her training camp in Colorado and the Brazil games after. Sad to end their long Tiffin history, Beth said goodbye to Ellen and Lizzy. I’d miss her friends, too.
I dropped Beth and Peggy off at the Detroit airport. Then I sold the beds, emptied the apartment, loaded the car, and gave away the rest. I headed east, excited for the new beginning. I replayed my favorite Joshua Radin song, “Everything’ll Be Alright.”
Wherever we lived, John made it my home.
When I arrived back in Waltham, our apartment only had a sofa, a TV on the floor, and two mattresses. I unpacked my grandma’s etched crystal bowl for the kitchen counter and added fresh fruit.
My African violets survived the car ride and found new sunny windows to love at the top of Bear Hill.
At the Paralympic Championships in Vancouver, Canada, Beth excelled in the 200 free. Distance events tapped into her ever-increasing stamina and allowed her to find the best rhythm. They also translated to her top spots in the World Rankings and high odds of earning medals. However, the 100 free event for S3 women at the Beijing Paralympics would be dropped, leaving only two events, the 50 free and 50 back. One length of a long course pool, both sprints.
Not one distance event.
Eliminating all except two shortest S3 events for Beijing would carry forward, by precedent, to the next Paralympics, where they might be cut again. At least 90 percent of all Paralympic swimmers carried classifications with higher numbers than Beth. They had opportunities to qualify in many events in a wide range of distances and strokes.
Firmly closing the door on distance events, Peggy and the Harvard coaches shifted the focus of Beth’s workouts.
They eliminated circle turn practice and added more sprint sets. She wouldn’t race again in the butterfly, breaststroke, individual medley, or 200-meter events. I suggested she reset her first slow American Records, including the 200 back. She also could easily claim more records in other strokes and distances. Beth chose not to reset slow records, or swim other events just to get her name in the records more often.
Beth’s forward freestyle progressed to surpass the speed of her double-arm backstroke, making the 50 free her best chance for a medal in Beijing.
The freestyle also placed her higher in the World Rankings. She aimed for the 50-meter freestyle American Record, the most difficult in her classification. Beth also shared her newest goal: a small tattoo on her leg when she made the Beijing team.
Next: Wrong Moving Address!
Beth’s second trip to the Paralympic World Cup in England fell conveniently during reading period, Harvard’s open study time before finals. I stayed home. Peggy flew to Manchester as a Team USA coach. Aware of Beth’s earlier solution for the high bed at the same hotel, Peggy placed the box springs along the wall and left the mattress to sleep on. Beth brought home a bronze international medal.
In Ohio, the two-story Tiffin home we bought in 1984 for $39,000 appraised 23 years later at $105,000. In the midst of the housing crisis, home sales had slowed nationally and even more in Tiffin because of factory closings. We listed the house for $99,000. On a lucky day, a young couple requested a second showing of our home. We told them we would accept an offer of $90,000.
The home where we raised our children sold.
An early closing date forced us to rent a Tiffin apartment for two months. I turned in my notice at the nursing home and sold our second work car. We left our old house and garden walkways on an emotional day. So many memories. I wish I had kept the seeds of the flowers we called 4 o’clocks. They thrived in the dirt of a front window well. Over decades, the colors blended into one-of-a-kind blooms, each flower unique.
At a tiny apartment across town, John and I carried a double mattress to the bedroom floor and a single bed on a metal frame for Beth in the living room. The only other furnishings: a TV, card table, and two matching chairs. And important things, like my African violets.
Beth’s sixth swimming summer began with my drive east to pick her up at Harvard and bring her to Tiffin for the last time.
She swam with SAK and Peggy at the outdoor pool and on her own at the YMCA. She researched her senior thesis. Always reading, Beth checked off more books on her top one hundred classics list. We both read Jane Austen books and watched movie renditions, always rating the books higher. She completed her Harry Potter collection with the seventh and last, “The Deathly Hallows.” The first 24 hours of sales set a new record with 11 million copies sold. She waited in a long line with Ellen and Lizzy to see the fifth Harry Potter movie, “The Order of the Phoenix.” A dinner in Sandusky with Laraine ended in a teary farewell, probably for the last time.
Beth started graduate school applications and made notes for admission essays.
“I have met many people with disabilities who are limited by inadequate health services. This stark reality has shifted my focus from a childhood desire to be a doctor to fighting for disability rights.”
Next: More Travels!
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