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!
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My first day as manager of a Tiffin, Ohio group home, I trained to administer meals to a resident with a feeding tube, followed by me training other staff. I liked the four men who lived at the home, and knew two of them from when I worked at the local institution. I worked 24-hour shifts, 3pm to 3pm, often three in a row. It simplified staffing the overnight hours, but challenged me, mentally and physically. Sleeping well at the group home rarely happened. I scrambled to get up to speed on preferences, goals, routines, behavior plans, staff scheduling, meal planning, grocery shopping, outings, medications, paperwork, and new state requirements. On my days off, I was on call.
The day-to-day responsibility for the health and welfare of four men was daunting. The men attended the county workshop for adults with developmental disabilities on weekdays. Ideally, that time would be used for administrative planning and paperwork. Instead, since the residents had multiple health issues, weekdays often included taking one of them to a doctor’s appointment. I learned complicated medication regimens, as well as scheduling regular appointments, ordering refills, and making sure all staff documented every small thing, every day, in the correct way. I often drove to the group home on my days off for at least a few hours, just to keep up. My agency's new quality control supervisor visited one weekday morning after the men boarded the workshop bus; she had been the manager before me of the same home. She pointed out missing papers in the resident binders, which I was aware of. I regret not being more assertive. I wish I’d spoken up and showed her my long to-do list that included the missing items. Papers she neglected to obtain as the previous manager. Instead, I stewed. Next, my agency’s director made a counterproductive decision about a resident’s behavior plan by caving in to pressure from a resident’s family. I typed up evidence to support a better approach, to avoid dependence on a walker he didn’t need. I met with the director to plead his case, to no avail. Later that day, the same resident threw a tantrum near midnight. Following the new behavior plan, I had to encourage him to use the walker by his bed on the way to the bathroom. He didn’t need one. The ill-advised plan guaranteed more acting out, increased dependency, and needless frustration all around. When his loud yelling finally ended, I poked my head into the other bedrooms to reassure and quietly tell the other residents everything was okay. Good intentions, bad outcome. The youngest resident thought my intrusion meant it was time to get up, so he jumped out of bed and started his morning routine. My attempts to explain and redirect irritated him. Nonverbal, he insisted on changing clothes and sat at the kitchen table in the dark. I tried to reason with him, saying it wasn’t time for breakfast. Agitated, he tried to tip over the table and would have succeeded, except the home had an unusually huge and heavy one. When he calmed down a bit, I brought him a bowl of his favorite cereal with milk. He finished and sat in his rocking chair in the living room, still angry. I kept him company while I wrote out the required incident reports. Next: A Difficult Decision! ![]() (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.)
Nothing in Tiffin, Ohio prepared us for the challenges of living in Cambridge, Massachusetts. On a sunny fall morning, I drove through the main gate of Harvard Yard and joined the line of vehicles waiting to unload in front of the freshman dorms. The one and only time we drove our car on the wide concrete walkways of the picturesque Yard. I parked by Thayer dorm and unearthed a wheelchair from the hatchback. Beth carried what she could on her lap, holding a pile in place with her chin as she wheeled into the building. In her second floor suite, a paper on a bookshelf listed previous occupants since 1886, including Brooke Ellison, the young woman pictured on the ‘Quadriplegia at Harvard: A+’ billboards. She graduated from Harvard in 2000, the same year as our car accident. Tall windows overlooked a wide courtyard with lovely old trees. I left Beth at the dorm while I moved the car. While she picked one of the two bedrooms and started to unpack, I eventually found a parking place several blocks away. Her roommate Rakhi would arrive the next day and they would share a common room and a bathroom. I offered to stay with Beth the first night, even though I knew her answer would be no. I supported her independence, but I also struggled with letting go. I accepted the uncertainty of whatever my new role would be with Beth, but the thought of living in a strange place on my own and finding new jobs overwhelmed me. That evening, it was time for me to move into my new living situation for the next eight months. My head pounded, beating in unison with my heart. What should I expect with the apartment and the person I’d share it with? I had never been on my own before, except for one year in a dorm at OSU. Cambridge looked like a foreign city compared to Tiffin. With no GPS, I followed a printed map. The unfamiliar surroundings stoked my anxiety. I missed a turn and circled back on unusually narrow one-way streets, former horse and buggy paths. I focused on avoiding poorly parked cars, heavy traffic, assertive walkers, and too many bikes. I wished for a fraction of Beth’s courage. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth added the song Jump by Van Halen to her music mix at Peggy’s suggestion. At local USA Swimming summer meets, many swimmers wore ear buds and held iPods as they waited to compete. Beth was the only one in a wheelchair—with the perk of a lap to carry the iPod on top of her towel and goggles—but not the only teenager with a disability. In my support role as the Adapted Chairperson of the Ohio Swimming Board of Directors, I talked to other swimmers with visual challenges and limb differences. The teenagers with a disability at those USA Swimming meets had no competition, with no one else in their classification in attendance. They swam in full heats with able-bodied peers who always touched the ending wall before them. Each of them, my daughter included, raced the clock. At a meet in Canton, Ohio, I cheered as Beth reset three American Records and added a brand-new one in the 200 Individual Medley. During a SAK practice at the outdoor pool, dark clouds brewed. I waited at the pool, knowing that the approaching storm would trigger Beth’s tornado anxiety. At the first distant rumblings, she asked to get out of the water. She couldn’t get out and into her wheelchair by herself. Peggy stuck to her club policy and kept the practice running until the siren blared, indicating lightning in the vicinity. That was the only time Beth was not happy with her coach. A time she remembered and teased Peggy about later. Beth wheeled through rain to the car as lightning streaked the sky. We couldn’t get home fast enough. Her trauma abated after she immediately checked the computer to confirm the absence of tornadoes in Tiffin. An Ohio girl, tornadoes didn’t trigger anxiety for me, but other things bothered me. I worried about my job, about the residents at the group home I managed and what might happen next. At home, Beth’s transition to college dominated my thoughts. And living in a strange city by myself in the fall. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The Paralympic Trials meet in Minneapolis created anxious uncertainty. Would Beth make the U.S. team going to Greece? If she did, could she leave Athens early to start her freshman year at Harvard? Additional stress: Beth would attend Trials as a member of the Toledo team, yet she had decided to switch to her hometown team. ...And continued to put off telling GTAC. Coaches from both teams would be at Trials. Previous times and records faded to irrelevancy. The only races that counted at Trials would take place in the three days of the meet. This fact put the few swimmers with quadriplegia at a disadvantage, since they had a higher likelihood of health issues that impacted performance. The first year Beth swam competitively, her times varied widely. Three years later, she was stronger with fewer health issues. As a result, her races usually fell into a more consistent range. I updated my list of Beth’s best times and official records. I hoped to add to my list at Trials. However, for an S3 swimmer, new American Records were no guarantee for a spot on the U.S. Paralympic team going to Greece. John, Beth, and I flew to Minneapolis with the help of a Challenged Athletes grant. Airport security glanced in our direction and waved Beth through. She put up with a cumbersome process to help her to an aisle seat in the plane. John and I climbed over her to get to the middle and window seats. At the hotel, Beth twisted nail polish bottles open with her teeth for her pre-meet ritual. Her fingernails shined in red, white, and blue, fitting choices for Trials. She didn’t care about her painted nails looking less than perfect. Beth trusted that more practice would yield better results—like so many other things. Next: A Teenager's First Trip Overseas? (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth decided to switch club teams from Toledo’s GTAC to the Seneca Aquatic Klub (SAK). Her friends from the high school team also swam for SAK. They practiced down the street from our home in Tiffin, compared to an hour drive to Toledo. The tough part would be telling Beth’s first swim coaches at GTAC. They supported her initial attempts to learn new strokes when it looked impossible to me. She planned to tell them about switching teams at her next practice. When we left intensive care, the doctor placed no restrictions on swimming. Still recovering, Beth insisted on driving to Toledo with me a week later for a swim practice. After a few laps, she felt nauseous, but only asked to get out of the pool to use the restroom. She did not elaborate, complain, or make an excuse. The coach teased and called her a wimp. He honestly didn’t know it was possibly the worst thing to say to a teenage quad, especially one like Beth who was sensitive to appearing weak. In the locker room, I handed her tissues to wipe her eyes. She asked me not to mention the insult or her nausea. I urged her to leave with me for home, but she returned to the workout and actually did wimp out on breaking the news about changing teams. At home, I encouraged Beth to make the phone call to GTAC. A talented procrastinator, she decided to put off telling them until after the Paralympic Trials meet in April. To give them the credit on the chance she made the Athens Paralympic team. Even if she earned a spot, not a sure thing, September in Greece would interfere with Harvard. Should I hope Beth would qualify for the '04 Paralympics? Perhaps not. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) I stopped counseling since I was perfectly fine. After all, I finally made progress in the wake of three years of weekly sessions. Guilt and anxiety no longer dominated my days, which felt like a monumental gift. I scheduled dentist appointments to fix my second cracked molar, casualties of teeth clenching—despite the biteplate I wore each night. My doctor added a temporary muscle relaxant at bedtime to reduce the clenching. A high dose of Celebrex usually tempered the headache and kept me moving. I watched Beth hold a pen awkwardly in her right fist, not hesitating as she wrote her motto on a Challenged Athletes application. ANYTHING IS POSSIBLE. She wholeheartedly believed the motto was true. And it really was, though only for her and a small percentage of other people with her priceless perspective. Those with and without a disability. I filed away a note to myself that said, “Anything is possible, except when it’s not.” I intended to write about how she dismissed all she couldn’t do as irrelevant. “I think walking is over-rated,” Beth said, with a smile. Unable to stand and not focused on a far-off cure for quadriplegia, she continued to work hard to defy the usual limits of quad hands. Her spinal cord injury erased normal finger function. Even so, she wouldn’t write off any fine-motor tasks she really wanted to do. One example of many: putting her hair up in a ponytail after trying several times a day for two years. A tribute to unwavering belief and persistence. As Beth's last year of high school started, she quietly completed an early admission application to Harvard, convinced it was a long shot. “I didn’t tell anyone since I didn’t think I would get in,” she said. If someone asked about college plans, Beth mentioned the University of Michigan, one of the colleges she planned to apply to after she heard back from Harvard in December. NEXT: A new job! ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The sunshine of a new spring, along with my once-a-week counseling sessions, kept my well of worry from overflowing. Nearly three years post-injury, Beth showed me that her life with quadriplegia could be so much more than I had imagined at first. My anxiety dropped from a scary level to something more manageable. Chronic head pain remained a challenge. My obsession with worst-case scenarios improved from hourly to only some days. Most teenagers felt invulnerable and didn't worry about risks. That group included my youngest, despite her disability. We lived a few blocks from the high school and Beth liked the idea of wheeling there instead of driving with me. My first thought: NO! How could it be safe for her to cross alleys and streets in a wheelchair? Beth wanted to try. On a weekend, I walked next to her on a trek to the high school. The first obstacle involved wheeling over driveway stones to get to the sidewalk in front of our house. Next, the old neighborhood had broken sidewalks and no curb cuts. We tried a narrow alley instead that had bumps and stones and potholes. And almost zero visibility for cars with bushes blocking the view. When we crossed Tiffin’s Washington Street in between parked cars, drivers approached fast. On the high school grounds, there was no way to avoid either a long incline at the front entrance or a harder slope into the parking lot towards the automatic doors. I continued to drive her to and from school. The Quiz Bowl team finished a winning season, undefeated in the league. Against my advice, again, Beth joined the high school spring musical, Hello Dolly. She wore a headset to manage the stage crew while Maria shined in the lead role. After a show, I conversed with friends in the lobby without making a quick excuse to leave. The girls stayed out late at cast parties that followed the show's success. John and I dropped our strict curfew rule after the car accident. A spinal cord injury had changed our perspective, with a new awareness of what really mattered. And what didn't. Beth wasn’t happy with her ACT score for college, so she studied practice books before taking the test again. Not my idea. The second ACT improved on her first composite score by a surprising four points; she credited her English teacher, Mrs. Kizer, for her high English score. Beth set goals on her own and I supported her unconditionally, but not for bragging rights. More than anything else, I needed her to be okay, to be really okay, as she claimed the night of the accident. Was it too much to wish the same for myself, for everyone I loved, and for the rest of the world? Flowers burst into bloom in John's big garden with the ramped walkways. I loved the sunshine. Keeping up with Beth kept me busy and distracted most days, especially when my headache settled at a lower baseline. Lots of comings and goings. School, after-school activities, volunteering, swim practices, and time with friends. Sometimes I drove while Beth, often tired, dozed in the passenger seat. Overbooking her time shifted from a frequent inclination to an ingrained habit. She didn’t want to miss out on anything. Next week: Beth’s first swim competition with the forward freestyle! |
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