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!
8 Comments
(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. (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.)
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! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s roommate returned to the dorm from India. Rakhi shared sad stories about her volunteer work with children who were orphaned in the late December earthquake and tsunami. The tragedy killed more than 230,000 people in fourteen countries. Living in Cambridge, a truly international city, I felt more connected to a big world than I had in Tiffin, Ohio. About three weeks after the blizzard, Beth’s car still sat encased in snow and ice up to the windows. Snowplows clearing the street piled up extra snow on one side. An announcement from the city of Cambridge incited panic. Officials would begin to ticket cars that had not been moved since the winter storm. The next morning, crowds of people attempted to free their cars all over town. I tried my best, but half an hour later with little progress, I paid two teenagers to help who had chipped ice away from the wheels of another car. Spring couldn’t arrive too soon. A new semester packed Beth’s days with classes, volunteering, swimming, ongoing assignments, and a heap of books. Her first semester grades, all B's and A's, calmed her fears of not belonging at Harvard. She didn’t stress about breaking her all-A streak from high school. College life challenged her with the daily basics, so she prioritized her time and avoided social activities. With early morning swim practices and late night studying, she took advantage of breaks between classes for power naps. Beth made an attempt to take care of herself through her toughest winter. The continuous scrapes on her legs and feet from the pool walls healed slowly. She put waterproof bandages on the worst ones. When a cold surfaced, she treated it seriously to avoid chest congestion and pneumonia. She followed her lung doctor’s advice with decongestants, extra water, and more sleep. Swimming maximized the impaired lung capacity caused by her injury, but when she caught a cold, she still had a small, weak cough. She discontinued the last of her asthma medicine, Advair, with no return of symptoms. Since her leg spasms lessened with frequent swimming, she stopped taking a muscle relaxant. Except for a round of antibiotics now and then, she appreciated being medication free. . . . A rare thing for someone with a spinal cord injury. The college swim team season ended in February with the Harvard Women’s Swimming team as the undefeated Ivy League Champions. When team practices stopped for the rest of the school year, Beth focused on her four-year swim plan and continued to practice religiously. She grounded herself at Blodgett pool. Next: An Astonishing Invitation! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Besides snow, Harvard presented other accessibility challenges. With massive historic buildings, wheelchair access often involved out-of-the-way back doors. Some required making prior arrangements for keys, key cards, or lifts. An unanticipated obstacle ruined a cold morning. While Beth’s roommate traveled, the only elevator in Thayer dorm broke down. She couldn’t find help to get down the steps in time for the shuttle to the pool. Frustrated, she called her coach for the first time about missing a team practice. When the elevator was fixed, it remained unreliable. Temporary fixes for the elevator varied in duration. Harvard’s maintenance director gave us his cell number and put a repair team on call. He explained that a new elevator required gutting the historical building—not an option. Unfortunately, replacement parts for the ancient elevator had to be specially made. Beth hated to ask for assistance. However, she loathed missing classes and practices more, so she placed the phone numbers for the maintenance director and floor proctor on speed dial. They usually responded quickly. Noah hadn’t gone to bed yet early one morning when he and the director carried Beth down two flights of dorm steps at 5:45 a.m. for swim practice. I helped with the stairs whenever I could. The day arrived when the elevator could no longer be fixed temporarily. The director offered to put Beth up in a nice hotel close to campus. She chose to stay put and arranged for help to get down and up the steps. The dorm elevator added ongoing stress. During that time, a relatively new elevator at the back of Annenberg came to a stop partway to the dining hall with only Beth inside. One of the servers heard her and stayed close by, talking to her for about 30 minutes until the elevator moved again. Over the weeklong semester break at the end of January, Beth and I boarded a crowded bus to visit New York City. A four-hour drive one way for a two-day visit. The Broadway musical Rent highlighted our trip. At the accessible entryway to the theatre, we waited to be seated near the actors' entrance. Recognizing one, Beth was star-struck when he greeted her with a smile and a hello. Drew Lachay, from the boy band 98 Degrees, played the role of Mark. The opening song introduced us to the beautiful concept of measuring our lives in love, through all 525,600 minutes in a year. We planned to taxi back to our hotel after the show. Beth wore unlined boots with no socks and a dress that bared her knees. Theater patrons quickly filled the taxis in the frigid night. Taxi drivers also tended to avoid people in wheelchairs, and Uber didn't exist yet. We ended up walking a mile to the hotel, stopping every few blocks at an open business to warm up. It was one of the rare times she let me push her wheelchair to protect her hands from the bitter cold. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The friendly lady who picked me up in the blizzard drove slowly up Mass Ave in Cambridge for over a mile. With barely one driving lane and no option to pull over, she stopped in the street and dropped me off two blocks from the Quad, saving the day for me. Surrounded by rolling hills of snow, I trudged down the middle of a closed side street the rest of the way, numb and battered by gale-force winds. Only one other pedestrian braved the blizzard on a street usually teeming with students and residents. Each of us could hardly even make eye contact, bundled to the max and looking down to cut the wind attacking our faces. I had never been so happy to reach and enter a building. In the warm room where I listened to the student and typed his words for his final exam, snow and ice melted in a puddle under my feet. After the final, I dreaded the walk ahead. On my way to Beth’s Harvard dorm, I stopped at the only business open, the Starbucks at the corner of Mass Ave and Shepard Street. A kind soul had shoveled a narrow trench from the door to the corner of the street. The snow on each side reached my chest. I sipped a hot chai tea and carried a latte for Beth for several blocks to her dorm. I climbed high snow hills on the ramp to the entrance. I called ahead and she met me at the door to let me in. Her latte was freezing by the time I arrived. I was glad to hear that her proctor had already offered to bring her meals from the dining hall. Drifting snow continued to block the dorm ramp after the blizzard winds died down, despite frequent clearing by college maintenance staff. No kind of wheelchair could get through, so I stopped to see Beth each day before or after my Coop shift. The sidewalks stayed impassable for a few days afterward, so I joined the many pedestrians walking in the streets close to cars. Compared to walking in the blizzard, trekking to the Quad and Beth’s dorm in bitter temperatures on icy roads and sidewalks felt like an improvement. When snow still blew, I pushed Beth’s wheelchair to and from the shuttle stop to resume swim practices. The shuttle drivers helped her up and down the icy hill at the entrance to the pool in the aftermath of the blizzard. Next: An Unanticipated Obstacle! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
January of 2005 started calm and cold. I bundled up to walk to my personal care assistant job six mornings a week along with second shift at the Harvard Coop bookstore five days a week, seven hours a day. During my evening shifts, I rode an ancient elevator to the cavernous basement storeroom when customers requested specific sizes not on display. Mice darted in and out of the shadows. It bothered me that the storeroom was always a mess — and it wasn’t my job to fix it. I obviously inherited my dad's precise organization. I sometimes had dreams of searching for something important among never-ending boxes in chaos. The day of Beth’s last final exam, a classmate pushed her through rising snow to and from the test. The snowfall shifted to a winter storm, burying sidewalks and cars. The worst of the blizzard hit on a Sunday. A snow emergency. Unearthing the car was not possible. Besides, there was nowhere to go. Ellsworth Avenue had endless drifts much too high to drive through. Everything closed, including the Coop, but I was scheduled to scribe for a final exam. The blizzard set records for New England, and not in a good way. When I couldn’t reach anyone by phone, I decided to walk to the Quad for the test, scheduled at the same dorm where the student with cerebral palsy lived. I also wanted to check on my snowbound daughter. I layered my clothes and added an extra pair of socks. The first person in my apartment building to try to leave, I worked for several minutes to free the frozen front door. Next, I fought with the icy snowdrift forming a barricade on the porch side. I could barely squeeze out. The porch floor, steps, and sidewalks disappeared in an ocean of white. Frigid blasts blew my breath away. I waded through thigh-high drifts on Ellsworth to Broadway. An attempt had been made to clear the bigger street, making my ankle boots briefly useful. I walked in the road around abandoned cars, even though I couldn’t begin to hear a vehicle approaching with the wind. The few cars on the ice-covered street drove slowly. I advanced half a block and turned back, ready to give up, when a lady in a van offered me a ride. She headed north on Mass Ave and told me she had never picked up anyone before. It was a first for me, too. Next: Blizzard, Part 2! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
After my morning job at the Quad, I headed to Harvard Square, a canvas bag always on my shoulder with a writing project and a book. Bright holiday music surrounded pedestrians and sometimes competed with a street performer braving the cold. Glitter and garlands hung over the streets, while store windows beckoned with cozy scenes of home and hearth. Christmas in the city. The Coop competed with the Square with lavish decorations and elaborate displays in every department. My second shift usually passed quickly between standing at a cash register and folding endless sweatshirts. I stood in a long line at the Coop time clock before walking home in the dark. The significant number of pedestrians on the sidewalks late at night continued to amaze me. In my sparse little bedroom, I opened my sewing bag and stitched lace on wings of felt peace doves to give to work friends. On my day off, Beth and I sang along with the performers at the annual Christmas Revels at Harvard’s Sanders Theatre, a beautiful rounded space with a dome ceiling made of natural wood. First semester classes finished for Beth, with finals to be held after a two-week reading period in January. She packed several textbooks and novels before we drove home to Ohio for the holiday break. John Mayer and others sang to us from the music mixes Beth made. Notably missing on the drive was her N’Sync Christmas CD. At home we played it on repeat. We watched favorite holiday movies with Maria. John suggested a dinner date. My best gift: Ben home from college and all of us together. I accepted an invitation to the Christmas party at the group home where I had worked. Not surprised that little had changed, I hugged the residents. And left later with relief and no regrets. At my mom and dad’s farmhouse in Vermilion, a tall live tree with handmade ornaments lit up the high ceilings and long windows of the parlor, as it had every December for well over a hundred years. Ben, Maria, and Beth gathered in front of the tree with their four cousins for the traditional holiday photo. I stood in the same spot many years earlier with my brother, sister, and cousins. At my in-laws in Lorain, John pretended to steal presents from his sister Jean to make her smile. She counted down the days until her January birthday. Beth rang in the New Year as she had for the last five years, with her best friends Ellen and Lizzy. They watched the Elf movie and shared college stories. Her friends also made plans to visit Beth at Harvard for the first time, over their spring break. I loved how the girls continued their New Year's Eve tradition of fondue, movies, and easy laughter. Next: First Harvard Swim Meet! |
Cindy KolbeSign up for my Just Keep Swimming Newsletter by typing your email address in the box. Thanks!Categories
All
Archives
November 2022
|