 Back home in Ohio, I returned to my job on the Alzheimers unit at the Shawhan.
I tried to engage the residents to brighten the moment, the hour, the day. In Lorain on a weekend, John and I sang happy birthday to his sister, Jean, one of the last songs she’d sing when her Alzheimers progressed. Another day, Maria called me on the way to the emergency room at Mt. Auburn Hospital in Cambridge, Massachusetts. Beth, suddenly sick with strong nausea, headache, and fever, had asked her sister to take her to the hospital. I worried about sepsis. The leading causes of death for people with quadriplegia were pneumonia, septicemia (blood poisoning caused by sepsis), and suicide. The emergency room staff identified an infection and waited for other test results. After a few miserable hours, Maria lost her patience with the staff. An ambulance carried Beth to a Boston hospital, while Maria followed in her car. An attentive doctor understood quadriplegia. He ran more tests. By morning, Beth’s fever dropped, and he ruled out peritonitis and sepsis. The doctor released her with strong antibiotics and instructions to return to the hospital if anything worsened. I was already on Rt. 90 in Pennsylvania en route to Cambridge. Beth’s severe symptoms lessened by the time I arrived. I brought her chicken soup from Au Bon Pain and helped as much as I could for a few days. I encouraged her to slow down, though she quickly returned to her full schedule. Big changes approached. At home in Tiffin, I divided a lifetime of photographs into four piles, one for each of our kids and one for John and me. I threw away old albums and put the photographs in labeled boxes of memories. Our ordinary lives had detoured to less traveled roads—with more on the horizon.
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 (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.)
Beth’s first semester of Harvard classes required more reading than was humanly possible for anyone needing sleep. She wanted to read every word, an insurmountable challenge. Like some of the other freshmen, she had doubts that she belonged at Harvard. College swamped her and she needed extra time to take care of herself. By herself. Swim training also required extended blocks of time. Beth called the shuttle operator to schedule rides to and from Blodgett pool, located south of the main campus over the Charles River. She wheeled a long stretch across Harvard Yard from her dorm to get to the shuttle, which dropped her off in the street above the pool. She learned to weave back and forth down the hill to the entrance to cut her speed and maintain control. Getting back up the hill? Always a slow challenge. On lucky days, another student going the same way would give her a boost. As fall began, Beth practiced once a week with the Harvard Women's Swimming and Diving team as team manager, plus a supervised practice another day with the assistant coach. With the addition of more pool time on her own with workouts from Peggy. At first, she compromised with three practices a week instead of her goal of five, to free time for homework. The swimmers on the team made Beth feel welcome. At one practice, the coach asked her strong college swimmers to complete laps without using their legs. Surprisingly difficult for even one lap. And harder still, using fists instead of open hands that could cup the water. With gradually increasing upper body strength, Beth swam hour and a half practices with modified drills and breaks at the walls. She thought of the frequent muscle soreness in her arms and shoulders as a reward for a good workout the day before. Next: What’s the main reason to swim on a college team? (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.)
Beth’s second year of high school would hold different challenges than the first. When she started her sophomore year, sixteen months after her injury, I could get through the days without crying in front of anyone, a victory of sorts. “My small group of really close friends in high school helped me in many ways,” Beth said, “including breaking my leg spasms and carrying my book bag. By the second year I had those things under control, but a friend continued to sit by me in class only because it was more fun that way.” I took a short cut through the school cafeteria on September 11th at lunchtime and paused by a strange crowd of silent students in front of the television screen. It took only a moment to get my first glimpse of unthinkable tragedy. I rushed to the locker room, relieved to find Beth and Maria waiting for me. Hugged close and safe, for the moment. I grieved with the nation, overwhelmed by the scale of the losses and the faces of children who would never grow up. My worst-case scenarios amplified after 9/11. Terrorism took on a life of its own in my mind, growing and mutating into an on-going and imminent threat. I tried to tap down the fear by storing bottled water in the basement and packing an emergency duffle bag. I wrote phone numbers and a meeting place on a small rectangle of paper, copied and laminated for each member of my immediate family to carry in their wallet. An article that I read caused me more worry, about the terrible knowledge that nuclear weapons had already been used in the past, and might be used again. My heightened fears grouped nuclear weapons with terrorism and a deadly virus. Toxic chemical spills were a high risk in Ohio with the heavy truck traffic. And a personal, selfish anxiety about any number of alarming events that could restrict prescription drugs; I was acutely aware of my addictions with antidepressants and pain medicine (not opiods, thankfully). Who would I be without the prescriptions? How would I help Beth? The very worst part of my anxiety was feeling helpless—powerless, useless—to protect my family. My counseling sessions after 9/11 were more emotional. My psychologist patiently explained to me that widespread catastrophe would be highly unlikely, as though that would comfort me. The tragedy of 9/11 had been unlikely. Our car accident and Beth's injury had been unlikely, too. I really (really) wanted to be optimistic, and picked up books at the library with positive messages. I wished that getting rid of anxiety could be as simple as just choosing not to worry. Just choosing to have hope. When Beth asked to go to the YMCA a few times a month, I read books on the pool deck while she moved on her back with her arms waving slowly underwater. I no longer needed to watch continually for her head dipping too long under the water. When I drove to Green Springs after school for physical therapy, Laraine encouraged her to keep swimming. Though technically, she was floating. I joined Beth in the water one Sunday at her request. She wanted to try the backstroke. The effort to rotate her arms out of the water caused her to sink. I splashed my face to hide my tears as I lifted her up. We had no way of knowing that the backstroke would be her fastest swim stroke.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s first health crisis arrived suddenly on a brittle January morning, about eight months after her injury. The nurse at our pediatrician’s office took one look at her and led the way to the doctor. After chest x-rays at the hospital, we waited while they called our pediatrician. He told me on the phone that Beth had pneumonia and I interrupted his plan to admit her to the Tiffin hospital. With his consent, I immediately called Dr. Miller, who sent us to Toledo. I focused on the icy roads to keep my breathing steady. Admitted to intensive care at the Toledo Hospital, Beth had never been so sick before. Her childhood asthma returned stronger than it had ever been. Extreme, relentless, uncomfortable symptoms alarmed us. Every labored breath ended in a wheeze. Her weak cough could not clear her partially paralyzed lungs. Her fever spiked too high repeatedly despite strong IV medicine. Her blood pressure, consistently low since the injury, fluctuated. With breathing treatments around the clock, a team of lung doctors for children closely supervised Beth’s care during the days. At night, a nurse checked on her frequently and called a doctor more than once to increase medication or add another. Four bad days and nights melted together with no improvement and little rest. I fixed pillows, offered fluids, and held Beth’s hand, unnerved at how little I could do to help. A nurse carried a few get-well flower bouquets out of the room to remove possible allergens. A doctor talked about surgery to dislodge the mass in a lower lung. He also showed me how to do physiotherapy by pounding her chest and back with a cupped hand. On the fifth day, Beth could breathe a bit easier, and asked to look at her pile of schoolwork for the first time that week. The sixth day, a technician in a gown and mask wheeled in a portable x-ray machine, which showed a smaller pocket of pneumonia. A PICC line for IV antibiotics was scheduled before discharge on the seventh day. An intern started to thread a tiny tube through a vein in my daughter’s right arm to her heart—with no pain medication first. Beth’s left hand suddenly touched mine, her eyes wide. With limited sensation in her arm, the pain had to be significant. When I questioned the intern, she said the procedure was almost over. I hugged half of Beth through TEN more minutes while she wiped away silent tears with her left hand. Our first evening back home, a nurse arrived to connect the IV antibiotics to the PICC line, and left before it finished draining. Beth’s upper right arm swelled, hot and red. I called Dr. Miller in a panic and couldn’t stop myself from crying on the phone. She told me to disconnect the IV. If the swelling went down, we should drive to the hospital in the morning to have the PICC line taken out. If it didn’t, Beth would need an emergency room that night. I turned on the nebulizer for another breathing treatment, and lay down on the hospital bed beside Beth, hugging the arm with the PICC line. I checked her arm through the night. Would she be admitted to the hospital again? Would the leaking vein cause other problems? Would her lungs clear without IV antibiotics? Dr. Miller met us in Toledo on a Saturday morning to take out the line and prescribe strong oral antibiotics. I apologized for my emotional phone call the night before. I asked her how to avoid respiratory problems in the future, a futile attempt to ease my relentless anxiety. I scheduled a follow-up appointment with the lung doctors, the first of many. Beth found an upside to the scary week in intensive care. “I tired easily and fought infections and a bout of pneumonia the first year after my injury, but through it I learned how to take care of myself and reduce health risks.”  Our story continues from the moment in my first blog post when Beth tells me that everything will be okay. The Jaws of Life frees her from the car. She is rushed to a helicopter, blades spinning.
“I was, strangely, very calm,” Beth wrote in a school essay. “A nurse told me I was in shock. The doctors stuck many needles in me during the helicopter flight that seemed to last only a minute. I found out later that these were high doses of medicine that slows the chain reaction of nerve damage. I landed at St. Vincent hospital in Toledo." "I was taken to an exam room and they cut off my clothes. They jokingly asked me if those were my favorite jeans, and of course, they were. When I was taken to a room in intensive care, my dad asked me if I wanted to know what the doctors had just told him minutes before: I was paralyzed from the chest down. I believed it, but it did not scare me.” I was scared enough for both of us. The single tragedy of not walking spiraled out of control with shattered neck bones, surgeries, a cut spinal cord, paralyzed organs, and serious health risks of quadriplegia. I waited on edge for her optimism to crash. I felt like nothing would ever be okay again. Beth's morphine haze faded as we prepared to leave intensive care for rehab, ten days after the accident. Her experience continued to be different from mine. "Accepting my new disability never was a real issue for me. The issue was what needed to be done next." |
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