 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.
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 (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.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Back home after our Norway trip, Beth bought the new Harry Potter book, The Half-Blood Prince. I didn’t need to wait long to read her copy. During a family trip to Columbus to see Ben, we watched Murderball, a documentary about the remarkable U.S. Paralympics quad rugby team that competed in Athens, Greece. Rugby was an aggressive sport with frequent injuries, and caught Beth’s interest when a friend invited her to use his special rugby wheelchair at a Columbus practice. Ben volunteered to pick her up off the court floor when she got knocked out of the chair. I loved to hear them laugh. Coach Peggy vetoed Beth's plans to participate in a rugby practice, and also the sit skiing she wanted to try. Peggy reminded her that broken bones would derail her freestyle and Beijing goals. Beth technically could swim with a broken leg, with no cast, but the increased spasms would slow her down. “Peggy is immensely caring,” Beth said, “and she thrived on the challenge of coaching me in a new way.” In late July, I flew with Beth and Peggy to Portland, Oregon for a rare national meet at an outdoor pool. Swimming under the hot sun meant the few with quadriplegia contended with fevers, since their body temperatures couldn’t regulate normally. Despite a rising body temperature, Beth earned American Records in the 200 free and 50 back. She would’ve added another in the 150 Individual Medley (IM) except for an uneven touch at the ending wall. A disqualification. Beth’s right hand bent into a fist more than the left, so Peggy started the paperwork to apply for an IPC exception. In Portland, no other S3 women competed. This meant Beth couldn’t see swimmers on either side of her during races, since faster swimmers with higher-numbered classifications quickly moved out of her sight at the start. After a race, a reporter asked about her decision to give up the spot she earned for the Athens Paralympics. “I’m definitely not going to miss out on China,” Beth said, “and have put myself on a three-year training schedule to qualify.” Between swim sessions, we drove the Columbia River Scenic Highway to picturesque waterfalls, with Mount Hood in the distance. Beth and I recalled the view of Mount Rainier where her swimming journey started. We wondered where we would be if we hadn’t gone to Seattle—where Beth set big swimming goals, and where we saw the unusual billboard with the caption, “Quadriplegia at Harvard: A+.” Next: Back to Cambridge for Year 2!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
In Norway, we snapped pictures to add to our scrapbook at the Worlds End (Verdens Ende), a desolate spot on the water with many small, bare rock islands. The islands reminded me of stepping stones for a giant heading into the strait of Skaggerak and the North Sea. The Worlds End looked exactly the same twenty-nine years ago, when I was as an exchange student. In Denmark, we drove with Anne-Lisé past cows grazing on small strips of grass next to narrow rivers. We visited and stayed with Gretha and her daughter Belinda, who was an adorable little girl in blonde pigtails when I first met them in 1977. We saw the sights in beautiful Aalborg and spent lovely, relaxed evenings with friends before driving to Norre Vorupar on the coast. We carried Beth into small bathrooms where her wheelchair would not fit. One evening, Gretha treated us to dinner at a fancy restaurant on a North Sea beach. Our server and friends teased John and me about ordering only water—apparently a social sin! :-) Back in Oslo, an airline called with unwelcome news. Our flight was moved up a day, so we boarded a plane after a heartfelt thank you and sad goodbyes with my second mom, Anne-Lisé. Our layover in Paris turned into a fiasco. First, the staff acted like they had never had a passenger with a wheelchair before. After we landed and the other passengers left, we waited for a clunky airport wheelchair, then waited longer for a strange cubicle on wheels that raised in the air to meet the back door of the airplane. The four of us reluctantly entered the cubicle, which carried us a long way to a terminal. Second, we learned our flight to Detroit had been delayed to the next day and the airline would not pay for a hotel. Third, we picked up our luggage and waited for Beth’s manual wheelchair to be returned to us. And waited. At the customer service desk, rude airline staff nonchalantly told us they couldn't find her wheelchair. No big deal? How could a wheelchair be lost? We moved Beth to a regular molded plastic chair since her back hurt in the airline wheelchair, but she still wasn’t comfortable. We had to keep asking the desk staff to check again, until they finally made a phone call. Or pretended to. Tired and hungry, we were not happy campers. Beth’s wheelchair was lost for two hours. Fourth, we boarded a crowded airport shuttle to a hotel. On the way, the driver pulled over for an unscheduled stop just to smoke a cigarette, while all of us had to stay on the shuttle, packed in like sardines. The hotel charged outrageous prices. We overpaid for a tiny room with one bed and two of us slept on the floor. When we arrived in Detroit, we brought with us a new appreciation for U.S. airports. Next: Oregon!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Twenty-nine years had passed since my summer in Norway as an exchange student. My former host mom, Anne-Lisé, invited us to stay with her for two weeks in July. With a new job in Columbus, Ben missed our biggest family trip. The other four of us boarded a plane. The rugged beauty of Norway’s fjords had not diminished since my first trip. We stayed several days at Anne-Lisé’s rustic summer cottage in Tjome. There was no road that reached her land, so she drove the car on grass and a dirt path. Huge boulders dotted the view, the landscape untouched except for a small home now and then. The cottage had been built next to a massive rock that extended from the main entrance and served as a deck. For breakfast, Anne-Lisé served tubes of caviar and chunks of cheese with heavy thin bread and wide crackers. Delicious, except for the caviar. Maria and Beth decided to swim in the Oslo fjord, a short distance from the cottage through woods. It was a difficult trek with a wheelchair and one of the few times Beth didn’t complain about being pushed. Massive rocks met the water, with no beach. I positioned Beth’s chair the best I could and lowered her to the rocks. The cold water (64ºF, 18ºC) nixed her plans to swim. Instead, I shot a photo of the girls in shallow water and complied with Beth’s request to return to her wheelchair. I should say, I tried to comply. Maria and I slipped on the wet rocks. Beth laughed. Then all three of us couldn’t stop laughing. When we tried again, we fell again. And a third time. Laughing and lifting never worked. Finally, Maria and I accomplished the task after catching our breath and planting our feet in a less slippery spot. We teased Beth, blaming her for our new bruises. In Oslo, the new Nobel Peace Center made a lasting impression, as well as Vigelandsparken, a beautiful sculpture park built on a stunning scale and depicting every stage of life. In 1976 at the same park, I sat next to the U.S. Ambassador at a formal ceremony to celebrate the U.S. Bicentennial on July 4. After he spoke, it was my turn. I stood at the microphone in a stars and stripes top and skirt. I read my prepared speech, and Anne-Lisé gave me flowers. Twenty-nine years later, we toured the Edvard Munch art museum with my second mom, Anne-Lisé, and her lovely granddaughter, Christina. At an Oslo pub with fresh flowers on our table, my teenage daughters ordered long island iced teas, their first legal drinks. Next: The World’s End and Denmark!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
My last weeks in Cambridge as a personal care assistant and Harvard Coop employee ended with easy goodbyes. I loaded the car—twice—with Beth’s backup wheelchair, single futon, lift chair, floor lamp, refrigerator and microwave unit, and more. I labeled everything and pushed my limits by moving the items by myself to the basement storage room at the upperclass house (dorm) where she would live in the fall. Everything hurt after. I scribed for the student with cerebral palsy for the last time as Beth finished her final exams and swam her last practice at Blodgett until September. We watched colorful dragon boats race on the Charles River before I packed the car for the long drive to Ohio. I couldn’t wait to be back home for the summer and planned to appreciate every minute. The upcoming school year, John and I would have an empty nest in Tiffin with Beth at Harvard, Ben in Columbus, and Maria graduating early in December to work in Boston near her sister. I wanted my kids to find their own way in life, but at the same time, I wished they could live with me forever. Feeling sorry for myself sparked a radical idea: moving to the Boston area if John retired in two years, after 30 years of teaching in Ohio. Maybe. Summer vacation officially started with an additional five-hour drive to Chicago for the wedding of Rakhi’s brother. The short drive seemed easy after the trek from Boston. I loved our road trips in Beth’s blue car with CDs and sing alongs. At one of the wedding events, I wore a long blue dress with a tunic top to a beautiful ceremony. At the evening garba, Beth danced in a short sequined top that bared her midriff above a matching ankle-length skirt, a gift made in India from Rakhi’s parents. We found out at the garba that a woman with a bare midriff meant she was looking for love. I never tired of adding to Beth’s contagious laughter. Back in Tiffin, Beth reunited with her best friends, Ellen and Lizzy, not knowing it would be one of their last summers together. Maria gave Beth a special gift, a beautiful sunflower quilted wall hanging that she sewed for a college class on women’s traditions. Last spring, John attended presentations at Heidelberg when the students spoke about their quilts. I wished I could have heard Maria talk about her sister’s favorite flower and the passion for life they shared. When I lived in Cambridge, I also missed hearing my oldest daughter sing at Heidelberg choir concerts. I wouldn’t miss any more of her solos. Seneca Aquatic Klub practices filled Beth’s calendar for her fourth swimming summer. Peggy showed us an underwater video from the previous summer with sloppy strokes. A recent one with smoother movements reinforced Beth’s belief that mastering the forward freestyle stroke was doable. Two teammates lifted her in and out of the pool as they had for high school practices. One morning, they carried her out to the diving board—under protest. Her attempt to enter the water gracefully ended in a belly flop, but she didn’t lose any sleep over her lack of diving skills. Next: Norway!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Dear Readers: This post is not typical. This is the second (and last) segment about my struggle with depression in Massachusetts. Thanks for following! -Cindy ❤ Five years had passed since Beth’s spinal cord injury and I had so much to be thankful for. I felt loved. I usually focused on gratitude and had no reason to feel despair. But when I gradually discontinued a medication, there it was, unbidden. With this sudden new depression, life became overwhelming. I thought about Beth not needing me in Cambridge for the next school year. The idea of her at Harvard and me in Ohio triggered old fears of health risks. How could I be in another state? What about pneumonia? What if a car hit her when she crossed the congested streets? What if she picked up a superbug virus from her chair wheels and antibiotics failed? With worst-case scenarios swarming in my head, I rode the T back to Harvard Square and hurried to Beth’s car, relieved not to see anyone I knew on the way. I drove to Fresh Pond in western Cambridge to one of the cheapest hotels in the area. Still expensive at eighty dollars a night. In my hotel room, sleep eluded me. With a searing headache, I thought about going to a hospital, but I wanted to hide this from my family. Beth was across town, but I refused to cry on her shoulder. I especially needed to call John. However, I was determined not to worry the people I loved the most. I dozed toward morning. It was my day off from the personal care assistant job, thankfully. In the light of day, it seemed obvious that body chemistry and chronic pain played big roles in my depression. Thoroughly humbled, I called my Ohio doctor’s office for a new Zoloft prescription. I braced myself for uncomfortable hours and days until the medicine helped again. I called off work at the Coop and stayed in the hotel room with the television and lights off until checkout time. I couldn’t justify another expensive hotel night, but after I checked out, I had nowhere to go. My friend Bonnie worked second shift and I couldn’t move in to her apartment until 9:30 p.m. Too restless and teary to sit or read or write, I wandered through the afternoon and evening. No longer in denial about depression, and stuck with a dependency to Zoloft. At the same time, I made peace with the fact that I needed medicine to function. I rewarded myself for not spending another night in a hotel by purchasing a new Life is Good shirt with a peace sign. The company’s philanthropy resonated with me, as well as their motto. “Life is not perfect. Life is not easy. Life is Good.” Amen. Next: Home Sweet Home!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Dear Readers: This post is not typical. This is about my struggle with depression in Massachusetts. Thanks for following! -Cindy ❤ I usually was not an excessive worrier. The crippling anxiety I experienced earlier, after Beth’s spinal cord injury, had been triggered by guilt and deadly health risks. When I lived near Harvard, I worried only a bit about all my children, and general things like them finding meaningful work and a loving partner. Maria and Ben had significant others; however, my youngest felt no rush to date. She had a very full plate. Both of my girls thought it appalling that I had married one week before my nineteenth birthday, much too young in their minds. We had no way of knowing that Beth’s first steady boyfriend lived across Harvard Yard in another freshman dorm, or that they would not meet until graduate school in another state. At the end of the school year, my mood plummeted quickly after I gradually discontinued Zoloft. I banked on my body adjusting over time, and it did, but not in the direction I hoped. At the same time, my roommate Janet left for Ohio to be married, which meant I needed to move out of the apartment before her honeymoon ended. For the month until the school year finished, when I would drive home to Ohio with Beth, I arranged to sleep on a sofa bed in a Coop friend’s apartment north of campus. On my moving day, I woke up to an alarming new low, exacerbated by a piercing, throbbing headache and a flare of intense fibromyalgia. I relied daily on Celebrex, an anti-inflammatory medicine, to reduce the headache. Unfortunately, the maximum dose couldn’t reach this higher level. Over-the-counter pain drugs didn’t work for me, and I had a bad reaction to opiates, so there were no good pain options. Deep sadness stung, mentally and physically. Every small thing seemed much too difficult. I forced myself to go through the motions for my morning personal care assistant job, barely saying a word and wiping tears away discreetly. After, I trudged through the thirty-minute walk from the Quad to my apartment on auto drive. I passed through the tiny apartment for the last time to take the garbage out, my steps creaking on the uneven floor. Janet bought my bed, and I left her my lamp and the bedding. When I pushed my key under Janet’s door, I carried my duffel, the same one I moved in with eight months earlier. I left the duffel in the trunk of the car. I had the day off from the Coop and planned to move into my temporary housing that evening. I stood at a corner, overwhelmed by sadness and the simple choice of which street to cross. And the idea of moving to a friend’s apartment where I’d never been before. The sunny day colored in despair, carrying me back to my old guilt and regret. I couldn’t stop crying. I felt weak and worthless. Frustrated and embarrassed, I decided not to reach out to John, or anyone. I didn’t have anywhere to go, no bed to curl up on, so I rode the T into Boston with the plan of hiding in a movie theater while I regained control. Instead, I paced in the expanse of the Boston Common, trying to calm down enough to call my friend Bonnie. I told her I’d move in the next day instead of that evening. I walked aimlessly, not caring how I looked. Far from home, I didn't know anyone in Boston. Even in tears, I certainly wasn’t the strangest sight in the Common on that or any other day. Next: Depression and Hope!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The spring sunshine brightened my view. I ran low on my anti-depressant with no refills, so I gradually discontinued the Zoloft and packed for a long weekend abroad. Beth headed back to Boston's Logan airport in May for her first overseas trip, a month after the Michigan meet. She accepted her invitation to the inaugural Paralympic World Cup in Manchester, England. British Paralympics paid the travel expenses for every athlete and coach attending from around the world, with funds from their national lottery. Peggy and I flew to Manchester on our own dimes, though she had started the process to become a U.S. Paralympics coach. I had been to England during my summer as an exchange student in Norway, but only in the London area. We explored Manchester’s stunning town square and massive historic buildings. The large pool complex held teams and spectators from every corner of the world. The World Cup was Beth’s first official meet as a member of Team USA. She didn’t request a personal care assistant for the trip because she didn’t require one, but I missed being with her in the hotel, the locker room, and on deck. Like others on the USA team, even those with better-working hands and arms, Beth squeezed in and out of a new tight leg suit with help from team coaches who called themselves “hiney hikers.” Beth’s hotel bed in Manchester was too high for her to get in it independently. She asked a teammate to remove her twin mattress and prop it along a wall. She slept on the hard box springs to avoid asking for help to get into bed. I didn’t find out until after the trip. It felt strange for Peggy and me to be spectators in the upper stands instead of in the middle of things on deck. She couldn’t sit still and often watched the meet standing up. Beth competed in the 100 freestyle in a mixed heat with swimmers in higher classifications. She reset her American Record in the event, swimming her fastest stroke, the back, during freestyle races. For Beth’s big race, the 50-meter backstroke, Peggy and I watched S3 swimmers wheel or walk to the starting blocks while the announcer introduced them to the overflowing crowd. A wide range of disability was apparent, including cerebral palsy, spinal cord injury, and limb differences. In a perfect world, they all had identical functional abilities. Beth held the world ranking of eighth in the 50 back. She took her place in a full heat of S3 female swimmers for the first time. A rare race with true competitors. After the buzzer sounded, she could see the swimmer in the next lane moving at a similar pace —also a first for Beth. I stood up and cheered as she picked up her pace, touching the wall in time to earn an unexpected third place bronze medal. After the race, officials “tagged” Beth for random drug testing. They followed her to the cool down pool and then to the staging area to be presented with her medal. Kiko, a friendly U.S. Paralympics coach, stayed with her and other teammates being tested, while the rest of the team returned to the hotel. Beth’s times moved her up in the IPC World Rankings to sixth in the 50 backstroke and seventh in both the 50 and 100 freestyle. The last evening at the first World Cup, Team USA celebrated the meet with a pub dinner of fish, chips, and mushy peas. Beth’s food tastes broadened, leaving behind her childhood staple of macaroni and cheese for late night pad Thai with tofu and veggies on Mass Ave, spinach salads in the freshman dining hall, and sushi in Harvard Square. Back home, Peggy shared her thoughts on the World Cup with a reporter. “It’s quite an accomplishment to see Beth take her swimming to such a high level in such a short period of time and know that she is still improving. This was the first international meet for Beth to swim in a whole heat of like disability classifications from all over the world. To place third and earn a Bronze medal is just incredible. There is a big horizon ahead for Beth.” Next: My Alarming New Low!  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
In late April, Beth and I flew to Michigan for the Second Annual Disability Open. Her goal was to officially get back on the U.S. Paralympics Swimming National Team, since she had temporarily lost that status by declining her spot for the Greece Paralympics. “I heard stories from the other swimmers,” Beth said, “but I don’t have any regrets. I knew I’d have more chances.” She happily reunited with Coach Ewald and other friends on the pool deck. Her fan club watched. My parents, John, Ben, and his girlfriend traveled from Ohio to join me in the upper stands. (Maria had to work that weekend.) Everyone in our family showed an interest in Beth’s swimming, but Ben shared the understanding of intricate details of classification, competitors, rankings, and records with Beth and me. I fervently hoped Beth regained National Team status, but not to be pushy or to brag. I simply wanted what she wanted, whatever was important to her. Wearing a Harvard swim cap, Beth swam the 50 butterfly in record time, but was disqualified. International Paralympic rules required air space between the elbow and the water for the butterfly, which she could do, but not every stroke. After the 100 freestyle, she touched the wall just tenths of a second under the needed qualifying time for the National Team. And reset her American Record. Beth beamed when she saw the time on the scoreboard, then waved at us in the stands while we hooted and hollered. Despite the chilly spring day, the post-meet tradition of ice cream carried on at a Dairy Queen, ending with long goodbye hugs with Peggy and the rest of Beth’s fan club. I wished John could return to Massachusetts with me, but he had to teach until the end of the school year in our Ohio hometown. Back in Cambridge, Beth signed up for the housing lottery with two friends. No personal care assistant. All of the freshmen living in Harvard Yard moved the next school year to one of the upperclass houses. The lottery worked a little differently for Beth since the only accessible options were in the Quad, the housing farthest from the main part of the campus. She would live in a dorm with multiple elevators. Newer elevators. Her dorm suite would have an accessible bathroom. A dining hall in the dorm added another advantage. I would be no longer needed in Massachusetts when Beth started her second year of college. I was proud of her and I fully appreciated her rare accomplishment of independence as a quad—but not the 700-mile separation approaching in the fall. Next: Beth’s First Overseas Trip! |
Cindy KolbeA mom with a story
to share about injuries that never heal and fortunate accidents. About guilt, disability, perspectives, and unexpected adventure. Follow my
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