(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth’s first day of high school passed smoothly—with support systems in place. Her favorite plan allowed her to sit next to a friend in each class. They photocopied their class notes, handled her bookbag, and left class early with her. With heavy books still a challenge for Beth to manipulate, we kept a set of textbooks at home. She also had a small plain table to use as a desk in each classroom. Involuntary muscle spasms made her legs bounce straight out, rigid. Her good friends could safely bend her knee to “break” the spasm and put her foot back on the wheelchair footrest. “I had a small group of very close friends who helped me in many ways,” Beth said. The second day of school, I followed my daughters down the hall from a distance, purposely looking down on the way to my new job. Thankfully, no one talked to me. Perhaps they didn’t know what to say, or maybe they respected my obvious desire to be left alone. As instructed, I followed my supervisor’s lead with my job. I mainly tutored at-risk 10th graders in math. Grateful to not have more responsibility, I genuinely liked the students, curious about their stories. Under other circumstances, I would have tried to earn their trust. I would have been concerned about their choices and advocated for their future. Instead, I kept my distance; my well of worry already overflowed. I also had no way of knowing how long I could keep the job. After school and physical therapy, a crabby parrot greeted us when we returned. Timber didn’t like being left alone through the school day. The moody parrot baby had a tougher time adjusting to change than Beth. I did, too.
6 Comments
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth arrived home to the realities of an inaccessible world. She wasn’t strong enough to wheel herself up the low incline of our new ramp and expended colossal effort to open the refrigerator. Her livable space shrunk without the second floor and basement. I hated our small bathroom and our new shower chair. Nothing was easy. I desperately wanted to make things better and suggested moving to a more accessible home. She insisted that we stay put, and I resolved to try harder. Three days later, Beth’s African Gray baby arrived to stay. The parrot stood nearly a foot high with striking gray and white shading. She named him Timber since he could not perch well, sometimes falling from a hand to a lap (tim-berrrr!), and because she had a crush on Justin Timberlake from N’Sync. A typical fourteen year old in many ways, my youngest wanted to look her best for the start of school. A dentist put a cap on her chipped front tooth from the accident. Beth asked for a haircut and her first highlights. When we went shopping with Maria, a lady asked about her sister’s wheelchair. “Some people assume I’m not intelligent because I am in a wheelchair,” Beth said. “They talk loud and slow when they first see me. When I do normal things such as moving around or crossing a threshold, some people will tell me ‘good job!’ like it is the most amazing thing.” Beth's friend Elizabeth (and Elizabeth’s mom) surprised her with an extraordinary gift, an elegant silver and gold ring with a small diamond, engraved with the word HOPE. Her five closest friends wore identical rings. The friends planned to pay for the rings until the Osterman Jewelers in our small Ohio town, Tiffin, donated them instead. When I dropped off a paper to the high school principal that explained quadriplegia, he offered me a part-time position in a program for at risk students. There wasn’t any other job I could do and be available to Beth, so I accepted. I hurried away, suddenly winded with a tightening chest, thudding heart, throbbing head, and dizzying view. Why did I say yes? I had none of Beth’s courage. How much would she need me? How many school days would she miss? My responsibility had doubled, tripled, without the safety net of rehab nurses. Anything could happen and I worried about everything. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth believed that everything would be okay. I had no injury and felt sure that nothing would ever be okay again. I blindly followed her lead and pretended there was hope when I saw none. I watched as experts measured Beth for her own chair. Quadriplegics primarily used heavy power wheelchairs, and then for back up, a smaller, lighter push version. Big motorized chairs required a van with a lift, while manual chairs fit in most cars. Beth had one question: “Will I get stronger faster using only a manual chair?” Our favorite physical therapist, Laraine, paused and smiled before answering with a simple yes, clinching the verdict. No motorized chair. We replaced the car in the accident with a hatchback station wagon instead of an accessible van. I let Beth make all the decisions about her care since between the two of us, she was the emotionally stable one. I also thought that she should feel in charge of her life, especially with most of her body out of her control. I did raise questions, though, when she ordered a manual chair when she could barely push one. I wasted my breath. Beth weighed every decision on the metric of possibility, on whether or not it might advance her goal to be less dependent. My goal was to get through the days without crying in front of anyone. “You don't really have time to cope with things,” Beth said. “You just kind of get thrown back into the world.” (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) When we arrived in Green Springs, Beth had a sunny hospital room to herself. We met the physical therapist who was an expert on spinal cord injury. With a big heart and bigger personality, Laraine would not disappoint. Laraine emphasized the strenuous work required over months and years for a C6-7 quadriplegic to be less dependent. Beth had zero strength—even in her arms and trunk where some of the muscles and nerves still connected to her spinal cord. I couldn’t imagine my youngest doing anything on her own, but she believed. The first time in physical therapy, Beth lay face down on her stomach, unable to lift her shoulders. At all. Sitting with her legs straight out in front, she could not keep her balance. Laraine supported her every step of the way, along with Jill or Amy. There was little progress in the first weeks. “At the rehab hospital,” Beth said, “the simplest tasks of putting my shoes on or sitting up by myself were the hardest challenges of the day. Transferring from place to place was impossible for me to do on my own. Wheeling myself any distance was difficult. My life consisted of two long physical therapy sessions a day where my therapists had no concept of being tired. They pushed me to exhaustion, but I knew how much they were helping and I appreciated it.” Beth looked forward to mail deliveries, surprised at all of the well wishes. We were overwhelmed by the generosity of our hometown of Tiffin, Ohio. My co-workers at the Tiffin Developmental Center donated weeks of sick leave time to me. The maintenance workers at the Center also built a long wheelchair ramp that connected our back door to the detached garage. John, Maria, and Ben brought more get-well notes and gift cards for gasoline and restaurants from friends and family. And news of an unusual gift. In elementary school, Beth had told her principal about the African Gray parrot she wanted to own someday. The principal collected donations from staff and students in the Tiffin City Schools to buy a young parrot and a large cage. Flowers arrived from the coaches of high school volleyball, the team she would have played on, and also from her club volleyball team, whose season ended weeks before. In the evenings, Beth and I took turns reading aloud from the brand-new Harry Potter book, Goblet of Fire, another gift from my co-workers. She could barely hold the book, even though it rested on a small table over the bed. At first, turning pages was impossible and we used clothespins to keep the pages open. We put a fat tube around a pencil to use the eraser end to turn a page. That worked until weeks later when she patiently figured out how to use her hands to accomplish the job. “Rehab was a great experience,” Beth said. “I was too busy to think about what had happened to me or to become depressed. Every new thing that I accomplished became a celebration. I was in another world. My family was always there. My best friends visited me often and even moved a birthday party to the rehab center so I could be there. The therapists became a second family to me.” Five baby African Gray parrots visited Beth in Green Springs. Propped up on the hospital bed, she cradled the noisy babies on her lap and picked the one that would be hers when she moved back home. The kindness of family, friends, and strangers would be repeated by many in other times and places. |
Cindy KolbeSign up for my Just Keep Swimming Newsletter by typing your email address in the box. Thanks!Categories
All
Archives
November 2022
|