(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
With growing confidence, Beth filled her time with the school newspaper, homework, volunteering, clubs, Raptors, and another high school musical. She also decided to get back in the pool as soon as the doctor’s ban ended. Towards the end of Beth’s sophomore year of high school, she was free to go to Green Springs for physical therapy once instead of twice after school. “Laraine said that when therapy gets in the way of life, then it is time to move on,” Beth explained. The last physical therapy session, almost two years post-injury, ended with the anticipated rite of passage. The final test: while Beth dramatically finished her last pushup, she pushed off her favorite therapist who was leaning on her back. Laraine dramatically stepped away. Everyone clapped. A sad and happy moment, the end of an era, though we would continue to meet Laraine and her students in Toledo every few months. “I continued physical therapy as an outpatient for two years,” Beth said. “Three times a week at first then going to twice and then once a week, we drove to St. Francis after school to workout for about two hours. Recently I ‘graduated’ from physical therapy since I get plenty of exercise on my own now and since I always am extremely busy.” At another seminar for physical therapy students, Beth enthusiastically shared a milestone. Leaning back in her wheelchair, she took an elastic band off her wrist and held it in her teeth. She used both hands and arms to scoot forward in the chair and then lean back. From that position, she reclaimed the elastic with the one finger she could move. Her smile wavered a moment as she concentrated on intricate degrees of progress. When the second loop secured a messy ponytail, she took a bow with a flourish and a ta-dah! Sweet 16 on her April birthday, Beth returned to the water. A physical therapy student, Colleen, offered to help at the University of Toledo pool on a Saturday. After observing the usual floating with arms waving underwater, Colleen, a college swimmer, provided advice and a hand of support under her back while Beth rotated her arms, one at a time. Next, they tried circling both arms together, causing her head to dip under water. None of it came naturally. Beth had water safety lessons as a toddler, but had never been a swimmer before the accident. With the first wheelchair games a week away, we met Colleen a second time. They focused on the traditional, alternating backstroke, taxing muscles and stamina. For the first time, she could swim the backstroke—awkward and faltering. Beth slept through the hour ride home, dreaming. Here’s Beth's video on how she puts her hair up: www.ablethrive.com/basics/putting-hair-up-in-a-ponytail
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![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) When snow started to fall in Ohio, I pulled my sewing bag out of the closet. I made my favorite peace doves out of felt with embroidered accents and lacy wings for Laraine, Jill, and the other therapists at Green Springs, part of our extended family. I loved how they loved Beth. I mailed Christmas cards decorated with doves, wishing for peace. For the world, for our country, and for me. John drove with Beth, Maria, and me to Toledo for the holiday party of the spinal cord injury group. Talking to other parents, I could answer the sad question of who was to blame for the car accident that injured Beth, and without crying. Progress of sorts after a year and a half. Though my guilt was still alive and well, and I quickly steered conversations away from the accident. I talked to other quads, some with serious health issues that increased my sense of foreboding. I wanted to be positive and optimistic, but I couldn’t find the way. John was in his element. He started conversations and listened to the journeys that others had traveled—and shared our family’s story. We teased him that everyone in Ohio knew about Beth’s injury. John often said that everyone has a story. Maria and Beth sat at the cool kids table with the teenagers while the younger children watched them. I heard part of a conversation about the first Harry Potter movie, The Philosopher’s Stone, in theaters since before Thanksgiving. Most of the teenagers had seen it more than once, including my girls. After our goodbyes at the party, I was relieved when Beth dosed off in the car, avoiding her anxiety about driving in the dark. Her worries were specific and situational, such as tornado warnings and the low gas indicator in the car. Maria already had a driver’s license, so one clear Saturday afternoon, my girls went shopping at the Findlay mall. On the way home, Beth noticed the low gas indicator turn on as they entered a fifteen-minute stretch with no gas stations. She wanted to turn around and go back to the closest station. Maria tried to reason with her, unsuccessfully, and they both arrived home frustrated. Thankfully, the conflict was soon forgotten. It was beginning to look a lot like Christmas—as it had been before the accident. It was easier to hold brief conversations with other parents after the holiday choir concert, always a lovely highlight of the season for me. When my kids were little, we read about Christmas traditions and their origins. Favorite songs, decorating the house and tree, making special food and cookies, playing card games, watching movies with popcorn, wrapping gifts, and making new memories to add to many lovely ones at my family's farmhouse. Sitting around the big dining room table at the farmhouse, I missed my grandma and grandpa, reminded how life can change in a moment. All the more reason to hug loved ones close. Merry Christmas and Happy Holidays to you and yours! ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) On the advice of the social worker at Green Springs, Beth and I met with a Rehabilitation Services counselor. He asked about a career. Fifteen years old, she responded that she might be a rehab doctor like Dr. Miller. Surprised, the counselor chose his words carefully and voiced objections. He doubted her physical abilities, but to be fair, he didn’t know how persistent she could be in finding ways to use her hands for fine motor tasks. Beth didn’t like being told she couldn’t do something. With the exception of standing and walking and jumping, she regarded most physical obstacles as surmountable in some way. She asked for my opinion. I shared my certainty that she could be a great doctor—after proving herself every step of the way in the face of resistance from those who would see the wheelchair first. A computer expert set Beth’s mouse to respond to the soft touch of her thumb and added DragonSpeak software. The early version required time to teach the program to recognize your individual voice. Getting comfortable with typing, she gave up on DragonSpeak. Learning how to drive peaked her interest much more. The rehab counselor guided us through the steps after Beth passed the written test for her learner’s permit. A specialized instructor from Toledo recommended specific car modifications. Driving would not be a problem. The biggest issues: getting in and out the car independently, plus storing the wheelchair. A van with a lift would easily solve those issues, but instead, Beth bought a little blue Ford Focus hatchback with insurance money from the accident. Toledo mechanics added all of the modifications. Sitting in the driver’s seat, Beth used her right hand to grip a large knob attached to an easy-to-turn steering wheel. Her other hand pushed or pulled a bar on the left side of the steering wheel to apply the brakes or to go faster. The gas and brake pedals on the floor also worked (after testing that her spasms would not be likely to hit the pedals), so I could drive it the usual way. To top it off, a big motorized box on the roof lifted and stored a folding wheelchair, the control box in the driver’s reach. “My newest challenges are learning how to drive a car with adapted hand controls,” she said, “and how to transfer in and out of the driver’s seat independently.” To go anywhere in the car by herself, Beth had to open the door to the driver’s seat, remove the foot rests, position the wheelchair, lock it, place the sliding board to bridge the gap to the car, slowly shift over, put away the sliding board, grab the remote control, release the hook from the top, take off the chair cushion, fold the wheelchair, catch the folded seat with the hook, and push the toggle to lift and store the chair. With anything less than perfection, the car would not start and Beth could not fix it. So...we rarely used the topper. I flattened one of the back seats so I could set the chair into the hatchback without folding it or taking the wheels off: one small simplification in days that felt complicated. We didn't know that Beth's little blue car would carry us far and wide, to adventures that were completely unexpected. ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The high school’s Individual Education Plan for Beth focused on access: special desks, leaving class early, the private locker room, and getting down the steps during fire drills. At an IEP meeting, the principal asked her what she needed. She surprised me by requesting a place for her wheelchair in the student section of the stadium for home football games. She also mentioned the problem of others being too helpful. When someone grabbed a push handle on the back of her wheelchair, she reached around and lightly smacked their hand with her fist. “I realized that my biggest challenge would be to insist on doing things myself and to become independent again,” Beth said. “At the risk of sounding corny, people are generally kind, so it was my responsibility to speak up for myself.” The first anniversary of the accident came and went without discussion. It didn’t seem to phase Beth, other than an appreciation of how far she had come since then. At counseling, I rehashed the night of her injury. My guilt and anxiety were far from rational and out of my control. Certain that I had ruined Beth’s life, I needed a way to erase the injury and her losses. I wanted nothing less than the world at her fingertips, with hands and legs she could feel and move. With a cut spinal cord, the only chance of recovery would be medical miracles of the future, but I still couldn’t accept her injury—or my role in causing it. The annual regional choir contest had been at Tiffin Columbian on the day Beth was injured on May 20. Early that morning, I had set up the concession stand in the cafeteria. After my girls sang, we left for Columbus. A year later, the choir contest would be out of town. The director, Curtis King, complained when a handicapped-accessible school bus would not be available, but Beth didn’t mind driving with me. I brought a book along and opened it to discourage other parents from talking to me. I also perfected the art of hovering at a distance to be available to Beth, but out of the way. She sang with her 9th grade choir and Maria had a solo in the Women’s Chorus, all earning high marks, as usual. Without being asked, Mr. King and his father had built a portable ramp for the risers so Beth wouldn’t be the only choir member on the stage floor. His unexpected kindness would be repeated by many in other times and places. ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The pneumonia winter gave way to spring before Beth felt well enough to request swimming at the YMCA. She attempted to put on a bathing suit by herself at home, much harder than other clothing, but accepted my help to finish. At the pool, I stayed with her in the water, watching as she floated on her back and waved her arms gently underwater. She stayed in the pool about twenty minutes with frequent breaks at the walls. I lifted her out of the water carefully to avoid scraping her back. Even so, the concrete walls left her lower extremities with abrasions that healed slowly. She wouldn’t consider any kind of protective coverings for her legs or feet, except for a few waterproof bandaids on the worst of the scrapes. Against my advice, Beth sang at tryouts for the high school musical Guys and Dolls. With the pneumonia week in the hospital fresh on my mind, I stressed about her taking on too much. With two of her best friends, Ellen and Jackie, she bypassed the stage steps and took the long way through the choir room to the stage. I drove Beth and Maria to and from rehearsals and we shopped for costumes at Goodwill. When a tornado watch started with a rehearsal underway, I returned to school early to pick them up and hurry to our basement. Ohio’s tornado season escalated in significance for my family. Previously, John would monitor the weather during watches and we very rarely camped out in our partially finished basement. No more. Beth felt compelled to heed every warning and watch at once, so we carried her down the steep basement steps. She couldn’t relax until everyone stayed in the basement, including Timber. The growing parrot sat heavily on her shoulder and played with her hair while she completed homework. When Timber hopped onto the papers in her lap, she prompted with his first words, up up, for him to jump on her hand. One stormy midnight, Beth insisted on a family trek to the basement during a long tornado warning, not a watch. Losing sleep, she admitted her anxiety, similar to her response to the low gasoline light in the car. I offered to find a good counselor for her, but she emphatically declined. A weekday afternoon when Beth stayed home with John, I sat in the bleachers at the softball field and watched Maria play on the high school team. A hard hit ball connected with the head of a girl from the other school. An ambulance drove right onto the outfield with lights blazing and sirens wailing. Maria didn’t hit the ball that hurt the girl, but the ambulance brought back unwelcome memories for both of us. We hugged behind the bleachers in tears. The year anniversary of Beth’s injury approached. ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) After two lost weeks, one in intensive care and one at home, I carried a nebulizer to the high school at lunchtime for Beth’s breathing treatment. Pneumonia had set back her stamina by months. A shortened day of school wiped her out, again. On edge and anticipating the next crisis, I felt an initial flash of fear when the phone rang, and relief when it wasn’t an emergency. For the first time in my life, I understood the compulsion to try to feel better through food. That didn’t work, but not for lack of trying. I joined the ranks of emotional eaters and had to buy bigger clothes. The completed elevator at school led to second floor classes for Beth, which created the need to carry her down the stairs during fire drills. I wrote a detailed procedure and helped a therapist from Green Springs lead the staff training. Several teachers volunteered to attend. The principal had bought a heavy vinyl sheet with four handles, two on each long side, like firemen used. Four teachers carried her on the sheet while a fifth moved her empty wheelchair. Concerned about hitting her head on a step, they lifted the sheet higher with extreme caution. “It took awhile for them to realize I don’t break,” Beth said. She also had a new favorite saying: “I’m not broken and I don’t need to be fixed.” During one drill, her Spanish teacher wore a football helmet to make her laugh. She put up with the drills, but disliked being carried outside on the vinyl sheet into a crowd of students. As more time passed, during a pre-planned drill, Beth talked them into breaking the rules with an unplanned stop inside the building at the bottom of the stairs, to lift her into the wheelchair. From there, she pushed herself outside. Riding the elevator every school day with a friend turned into entertainment. Sometimes they added their own elevator music. They flirted with boys on crutches, injured athletes who also used the elevator. When she accidentally bumped the alarm button and nothing happened, hitting the alarm on purpose became a joke. Beth loved to laugh and found humor in her situation that her close friends and family shared. Being a quad (quadriplegic) meant that you could not flip someone off with a middle finger, so raising a fist instead became a inside joke—though I knew that when she could do it the usual way, she wouldn't. At school, a friend scolded her for not standing up during the Pledge of Allegiance. They made summer plans to go to Cedar Point, famous for its roller coasters, to be first in line because of her wheelchair. At friends' houses or at ours, Beth liked to sit on the couch; when she was asked to get something in another room, she quipped about being tired from too much walking. “Everyone I know with an injury who is doing well has a sense of humor about it,” Beth said. “You need that.” ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) “My friends have been very positive, full of encouragement, and have accepted my disability, and treated me just like everyone else,” Beth said. At the high school, her friend Jackie bumped her manual wheelchair down two wide steps in the music room. One day, a small wheel turned sideways. After the girls tumbled to the floor, they burst out laughing. Beth, 14 years old, described the scene soon after it happened. “My choir teacher pretty much freaked out at first and he got me back into my chair really fast. It was funny!” The concerned choir director offered to change where Beth sat to avoid the steps, but she declined. Like Ben and Maria, she had inherited perfect pitch, probably from their grandmothers who had sung for weddings in times gone by. During my recent trips to volleyball tournaments, long drives, I loved how my girls had belted out their favorite songs with the radio. After the accident, Beth’s lung capacity limited the strength of her voice, but not her love of music and singing. I drove Beth to Green Springs three times a week after school. The physical therapists reminded my tired and pale daughter to take care of herself. She wasn’t getting enough sleep. By the time we arrived home on therapy days and ate a late dinner, the evenings barely allowed for the extra time needed for routine tasks like showering and too much homework. Marathon days for a newly injured teenager with quadriplegia. I struggled to keep up, too: bone-tired, hurting, and deeply sad. Laraine asked us to help with a teaching seminar for therapists, the first of many, on a Saturday. “I call on Beth to talk to newly-injured spinal cord patients,” Laraine said. “Her skills inspire them and her attitude is positive and motivating.” One of the therapists asked me what they could do to support parents. I responded that taking good care of our children was the best gift. I didn’t try to explain my tunnel vision, with no light at the end. At that point, I wanted to have hope, but I couldn’t see past my guilt. The therapists also had questions for Beth. “Most people dread hospitals and hate them. I don’t,” she said. “I have met many great people in hospitals. The St. Francis Rehab Hospital is my second home and my physical therapists are like family. Some may look back on my initial days at St. Vincents with depression and grief, but my experience was positive, except maybe the first day. To me, hospitals are not places of sadness.“ For the main part of the teaching seminar, Beth followed the initial steps of every workout and struggled to get on the mat table. Her favorite therapist assisted and described the muscle mechanics of the exercises. “Beth still faces many new challenges,” Laraine said. “I know she is up to the task.” ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth's young African Gray parrot screeched and squawked in an impressive range of piercing, demanding sounds. I tried to give Timber attention when he wasn’t yelling at me, but he didn’t like my attempt at a behavior plan. The parrot woke up early every day, an impatient alarm clock. On weekends, John and I took turns babysitting so the girls could sleep in. During my turn, Timber sat on my shoulder while I folded clothes or cleaned or cooked or rewrote my to-do list. I couldn’t sit still. Through Beth’s freshman year of high school, weekends focused on recovery. Maybe a movie with friends or an excursion to the YMCA pool. Our packed weekdays were overwhelming and exhausting between school, physical therapy, occupational therapy, extensive homework, and frequent medical appointments. Every small action of life was a challenge. The approaching holiday season lost its appeal for me. Timber shrieked when I pushed his cage in a corner to make room for our artificial green tree. With everyone busy, I decorated most of the tree, topping it with a red glass cardinal. The sweet ornaments my kids made when they were little did not evoke the usual nostalgia. I fought more tears, thinking about my babies growing up and the end of childhood. I avoided people and neglected friendships. I dreaded the social interactions required at holiday choir concerts and other events; “How are you?” echoed from well-intentioned acquaintances. How should I respond? I would not share my regret in the high school lobby. I refused to be a lightning rod for pity. When I was asked about Beth, deadly health risks of quadriplegia came to mind. Instead, I said something about her amazing attitude and found an excuse to retreat. My counseling sessions slammed me every week with sharp dichotomies. I had no disability and fought with pain every day. I appeared calm and anticipated crisis. I loved my family and my heart ached. My guilt spilled over in waves. How could I contain it? My psychologist didn't know. She reminded me about all the things out of my control—which might have been helpful for someone in a better frame of mind. ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The summer after the car accident, my doctor increased the dose on my anti-depressant and gave me two referrals, one to a psychologist for counseling and another to a surgeon for my dislocated thumb. Overwhelmed with our new normal, I put the referrals on hold, but I set aside my qualms about taking medication. I needed to stay afloat. Starting high school pushed both of us to our limits. For Beth, it was the physical demands, and for me, it was working as a tutor with too little sleep. She actually liked school, in spite of tiring so easily. “Most of my classmates only knew me as the shy volleyball player that I was before my car accident, but everyone was welcoming and supportive.” On a cold fall morning, Beth had a low fever with congestion. Her small shallow cough reminded me of the weakness of her lungs. When I asked her to stay home, we argued, even though I didn’t want to make the call about missing another day of work. She insisted on going to school. When I transferred Beth from the car to her chair, I hit an ice patch and we slipped to the pavement. Maria helped me lift her sister into the wheelchair, but my rocky composure had tipped over a sharp edge. Though I did my best to hide escaping tears, a few noticed. I said my head ached, no big deal. I didn’t lie. If pressed, I gave assurances that it would let up soon. After school, I moved a wheezing Beth into bed and rushed to give her medicine and water before she fell asleep. She made a request, a frequent one, to not let her sleep too long; a stack of homework waited. Beth needed the rest more, but that was a battle I never won. Alone in the quiet as she slept, I couldn’t fight the heavy sadness anymore. Then, it disturbed me that I couldn’t settle myself down for what felt like a long time—but I kept trying. When John arrived home from work, I shared the immediate problem: whether or not I could get through another school day without losing control. And worse, whether or not I could calm myself down when I did. More than anything else, I had to function day to day for Beth. She depended on me and I would not let anything get in the way. John knew about my chronic headache, but I had worked hard to minimize and mask the guilt and depression. I didn’t want to worry him. I love many things about my husband, including his ability to be a good listener. He hugged me and asked me to quit my job at the high school and start counseling. I agreed with relief. He suggested going out to a restaurant. No, thank you. He offered to schedule a massage for me. No, thanks. While I called to set up my first session with the psychologist, John made dinner. We thought that counseling would help. ![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The first weeks of school, I walked a tightrope, afraid of a long fall. Always a step behind, my goal was to function without crying in front of anyone. All the while, Beth set unnecessarily high standards for herself. Weak and exhausted, she didn't want anyone to push her wheelchair. She tried to get dressed and attempted zippers, buttons, and shoelaces with uncooperative hands. Her battles were physical. Mine were mental. Nothing was easy. Beth continued to surprise us, but not by wanting to go to her first football game in a wheelchair or her first high school dance. At the game, there was no way to access the student section, so she and her friends stayed on the track near the cheerleaders. She didn't ask to go to any more football games that season. For the Homecoming dance, John and I dropped Beth off at school with Maria and her friends already inside. Her shoes fell off during the transfer from the car to her chair. I put them back on and adjusted the sleeveless black dress several times, then again. An elastic strap under the dress held her knees together. She refused our help to wheel up the long sidewalk to the main entrance of the school, even though she couldn’t begin to open the heavy glass doors. From the car, John and I watched Beth’s slow, labored ascent up the long incline, another small action of life turned into a grueling challenge. John expressed amazement at her tenacity and how easily she took the leap of faith that someone would let her in. I worried more about social aspects than physical details. At home, waiting for her phone call, I braced for a negative outcome. How much vulnerability could she carry, as a new quad and as a new freshman at her first high school dance? Afterwards, my youngest wheeled to the car with barely-worn shoes on her lap and her three best friends alongside. Bursting with enthusiasm, the beaming girls talked over each other nonstop. They all wore the HOPE rings; Beth never took hers off. I drove her friends home, then I asked Beth if she had danced. Silly question. She loved the new experience of dancing in her wheelchair. I had stressed needlessly. With the crisis of the moment averted, I pushed my pessimism down the road. When Maria arrived home later that evening, she told me how her sister danced most of the night. Maria and I had shared tears over the shock of the accident, survivor’s guilt, and the cruel limits of a C6-7 injury. The night of the Homecoming dance, after Beth’s pure joy in life, we hugged and cried again. |
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