 John and I traveled for a day trip to Newport, Rhode Island for the first time. The landscape from the cliff walk brought the fjords of Norway to mind, a fusion of rippling water and majestic rock, oblivious to the passage of time.
Ben applied to several graduate schools across the country for a master’s program in literature. He decided to attend wherever he received the most financial aid. With acceptances in hand, Brandeis University won in Waltham, Massachusetts—the same city where John and I lived. All three of my kids would live close to us for the next school year. My doctor referred me to a specialist when the headache spiked, and my left arm prickled and hurt. I made an appointment with a physiatrist, a specialist in muscles and rehabilitation. Dr. Ariana Vora at Wellesley’s Spaulding office diagnosed my headache as cervicogenic: pain referred to the head from the cervical spine or soft tissues (or both) within the neck. Complicated by displaced jaw joints, fibromyalgia, and advanced arthritis. A body scan revealed an my unusually high level of arthritis literally everywhere. My neck, left elbow, right knee, and hands bothered me most. I was forty-nine years old, going on ninety. Dr. Vora ordered physical and occupational therapy to focus on my neck muscles in constant spasm. At one session, a patient complained loudly about over-the-counter medicine that completely eliminated her wrist pain because she hated taking pills. Whining about the absence of pain? I’d be happy if mine dropped from constant to sporadic. My physical therapist with daily headaches rolled her eyes at me in solidarity. I tried acupuncture, facet joint injections, and later, botox shots. I also drove to a shop in Brookline where an elderly Chinese man listened to the heartbeat in my wrist and sold me bitter, exotic herbs. Once. Daily exercise, meditating, and holistic approaches tamped down the headache to a lower base level. I appreciated my evolution of sorts: to be able to make time for me and not feel guilty about it. I valued myself more. I no longer thought of myself as weak and flawed for not getting all my ducks in a row. We all lived in the same messy pond, without perfection. I tried not to anticipate or worry about the next headache flare. I finally absorbed the idea of taking care of myself first which allowed me to give to others in a better way. I made extra efforts to connect with friends and family and started a gratitude journal. I had so much to be thankful for. Next: Beth's mosaic of squares! (Would you like to know about my brand-new Struggling with Serendipity book? Please click the links at the top of this webpage. Thanks!)
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 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Approaching the 12-month anniversary of her spinal cord injury, Beth participated in her first seminar for Laraine’s physical therapy students in Toledo. “Beth’s insights and down to earth presentations enlighten students and motivate them to challenge the spinal cord injury patients in their care,” Laraine said. The patient panel included a young married quad who showed the students her intricate embroidery while her adorable toddler played nearby. Another quad, an older man, seemed annoyed when his leg straightened suddenly. He broke the spasm by leaning forward and patiently pressing a fisted hand at the back of the knee on the same leg, a process my daughter would practice and duplicate countless times. “I was one of a few panelists who shared our experiences and answered many questions,” Beth said. “I also participated in the ‘hands on’ part with Laraine showing specific techniques. Then the seminar participants tried the exercises with me while we talked. I hope it helped them understand a patient’s perspective a little better, and also to see that a quadriplegic can do more than is usually expected.” Laraine asked Beth to start the physical therapy routine, to transfer out of her wheelchair with help, to lift an inert leg onto the mat table with a now-stronger arm, and sit up slowly on her own. As she sat in the long-sitting position with her hands in her lap, Laraine gently pushed and prodded her trunk. Beth stayed upright most of the time, winning the battle. The students clapped. To finish the demonstration, Beth wobbled through the steps of the ending routine independently. She tied the laces of her shoes and used her teeth to do the final tightening. It would take more persistent trial and error to complete the task without using her teeth. Laraine asked her to share the progress with her ongoing ponytail quest. Beth scooted forward in her chair and then leaned back to anchor herself for better balance. Her right wrist lifted the hair up from the nape of her neck. She put a standard elastic band around her left index finger and left thumb. With effort, she used her head as an anchor for her hand to move the hair through the elastic band. Unfortunately, it wasn’t tight enough. She kept trying to loop the band around a second time to hold the ponytail in place, determined to do it on her own. Another year would pass before Beth achieved her goal of a perfect messy ponytail. Curious how she does it? Here are two of her videos: www.ablethrive.com/basics/putting-hair-up-in-a-ponytail ...And one that includes tying shoes: www.youtube.com/watch?v=6HT-yjaeCJU  (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.)
Mid-summer at the rehab hospital, Beth gradually felt small sensations in her trunk and legs. The therapists called it a “return” that sometimes occurred after the shock of the initial trauma abated. She could feel a firm touch on the skin, but not hot or cold or any degree of temperature. Beth’s spinal cord had been cut at C6-7, but the new sensations proved that a tiny strand remained connected, defining her injury as incomplete. When we sat outside between therapy sessions, she could not feel the warmth of the sun on her legs. “I have regained only partial feeling in my trunk and legs, but still no movement,” Beth said. “I can move one finger on my left hand and my handgrip is still weak.” Zero finger control in intensive care changed to one digit, the left index, which could move a little. Limited to a range of three inches, the finger could not straighten or touch her palm. Even so, it was a gift, one that would make her left hand the favored one for everything except her right-handed habit of writing. I hoped for more returns which never happened. Simple tasks remained complicated or unworkable. The inability to put her hair up in a ponytail bothered Beth. She couldn’t manipulate an elastic band, but there was a second big obstacle. If she raised her hands high as she sat in a chair, she tipped forward to the floor. Beth depended on the wheelchair armrests to balance. Laraine taught her how to push down with her palms on the locked big wheels to shift and move her bottom, little by little, to the front edge of the chair seat. Then, Beth leaned against the backrest for stability to prevent a tumble to the floor when she lifted her hands behind her head. Before she handed me the elastic band, she tried to put her hair up on her own, again and again, until her arms trembled. “Early on,” Beth said, “I decided that I was going to become completely independent no matter how long it took.”  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Occupational therapy at the hospital focused on Beth's hands. We learned about the tenodesis reflex which some quadriplegics used to grip items, though it required persistent practice to use it well. I tested the reflex. I set an elbow on a table with my forearm straight up and my hand falling forward. Keeping my fingers loose, I pulled my hand backwards at the wrist. As my hand tilted back, the tenodesis reflex automatically closed the space between my fingers and palm. Sitting in a wheelchair at a table, my youngest was determined to manipulate objects with her hands. To grip a pen with a fat handle, she held it between her index and middle fingers by tilting her right wrist forward and up, her hand entirely closed. At first, she couldn’t press the pen down enough for the ink to show. Beth also observed and listened. We heard about the 1995 accident that left actor Christopher Reeve immobile and dependent on a breathing tube. His spinal cord injury occurred one inch higher in the neck than Beth’s and required nursing care around the clock. I tried to be grateful for my daughter’s ability to breathe independently and move her arms, but I wanted so much more for her. We met others with spinal cord injuries at rehab. One had a brain injury in addition to a bruised cord. A middle-aged man with an injury like Beth’s had lived his life in a nursing home. A newly-injured young man with paraplegia (paralysis in two limbs, the legs) refused physical therapy and moved to a nursing home. He had full use of his hands and arms. When another boy was paralyzed during fusion surgery to correct his scoliosis, his mom told me that he would not get out of bed for weeks. Then, he would not go back to school. “I learned how some people given the same situations react in opposite ways. I have seen how people take so much for granted,” Beth said as a 14 year old. “Some people had a tendency to stop. They wouldn’t try to be independent. That’s always been a goal of mine—to be independent.” Beth’s outlook stayed hopeful, but in a vague, trusting way. She had no idea where our future adventures would take us. |
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