A Debt Repaid

Note: I wrote this piece many years ago, and my thinking about limb differences, relationships between parents and children, and living with a disability has changed quite significantly during the intervening years. Read what children might like to hear from their parents about their difference here.

by Laura Faye Clubok, OTR/L
Chapter Twenty-Six
Ordinary Miracles

“Mommy, why are you crying?” asked 3-year-old Emily, as I sat with her and her mother in my occupational therapy clinic. Her mother was crying as she watched her only daughter pick up marbles for the first time ever with her left hand, her “little hand.” Emily knew that there was a difference between her right and left hands, that is, her “big hand” and her “little hand.” But she didn’t grasp how or why this difference could drive her mother to tears.

“Mommy’s happy to see you holding those marbles,” Emily’s mother replied carefully, dabbing her eyes with a tissue. But I knew that her explanation was incomplete. I understood why Emily’s mom would cry, both from pleasure at the success of the therapy and from regret that such therapy was needed. Today’s tears of thanks for Emily’s accomplishment were also a continuation of three years of sadness that her beautiful daughter, Emily, had been born with an unusual left hand.

How do you explain to a three year old that the shape of her hand has turned your life upside down? How do you explain this to your daughter without making her feel that it’s her fault? As I watched this interplay between mother and daughter, I found it increasingly difficult to maintain my professional composure because twenty-five years ago, I was the small girl who couldn’t understand why the absence of fingers on my own left hand had turned my family’s world upside down.

Like most small children, I learned by trial and error to use the tools that I was given at birth. Grasping, gripping, pinching, pulling, holding, releasing —these were the activities of an inquisitive little girl busily exploring her world. It just so happened that the tools on my left hand—a palm with a thumb and nubs of the other fingers—were packaged differently than those of my peers, and they came without a “use and care” guide.

As I was growing up, no one taught me preferred grip patterns. No one analyzed my use of thumb and partial index finger to grasp toys. No one worried that this unusual grip pattern might cause strain in overworked tendons. So when I began to experience pain in my left hand at age 8, my doctor explained to me and my parents something about “nerve injury” and referred me to an occupational therapist who crafted me a little girl-sized splint to rest the tendons. At that time, all I wanted from my first exposure to occupational therapy was to resume the life of a normal third grader, pain-free.

As I grew, I recoiled from drawing attention to my difference, preferring, as did my peers, independence in my activities. However, the adaptations that my youthful ingenuity had devised to perform everyday tasks independently—open a jar, tie my shoes, hold a necklace—began to cause me problems. It never occurred to me or to anyone else that the resting hand splints might temporarily diminish the pain, but that they would not eliminate the source of the pain completely. So I became a regular visitor to the occupational therapy treatment room at a local hospital, returning annually for a bigger resting splint for my left hand. At first glance, this room might have seemed like any other 1970s hospital room, impersonal and uninviting. To me, it seemed a magical place. Under my occupational therapist’s expert touch, once-inflexible plastic sheeting dipped in scalding water grew soft and supple, enveloped my hand, and then rehardened, forming a custom-protective cradle. Snug Velcro straps cut to size held the splint in place. I marveled at the splint fabrication process and imagined someday making my own splint, which I then would proudly wear to school, Girl Scouts, and soccer practice.

I visited that occupational therapy treatment room frequently for portions of my childhood. I vividly recall images of wooden peg boards; containers of blue, brown, and green putty; and hard plastic sheeting. The different materials in the room fascinated me; I longed to explore the cabinets and play with what I found. The occupational therapist showed me how the putty could help me strengthen my unaffected strong right hand. Indeed, during those years I learned many occupational therapy strategies that enabled me to rely on my strong right arm and hand to do activities, with my left hand assisting.

An automobile accident during my senior year of high school dealt my body a terrible reversal of fortune, as I received a fractured collarbone with whiplash injuries to my neck on my right side. When the injuries healed incompletely, my right hand was too weak and painful to do much of anything, including brushing my teeth, opening doors, and carrying textbooks. When I started college nine months later, my right hand and arm just couldn’t withstand the added strain of undergraduate life. Just six weeks into my first year of college, I began to awaken with pain surging throughout my right arm and hand. Getting through each day was an overwhelming challenge, as I struggled to perform formerly simple tasks like getting dressed and eating. Buttoning my shirt and zipping my jacket were painful. Cutting meat and peeling oranges were fatiguing. Within several months, one-handed typing and ultimately even writing were too strenuous. I initially assumed that the situation would be temporary, that my right hand would heal completely and that I would return to life as it had been before the automobile accident. But 8 weeks of immobilization failed to rest my right arm sufficiently to avoid pain.

When I returned for my second year of college, a pervasive, chronic muscle pain syndrome further limited me from normal college activities like attending lectures and turning pages in my texts. It became clear that because of my earlier over-dependence on my injured but healing right arm and hand, I had not been able to give that side the rest it needed to recuperate fully. Over the next two years, pain from muscles that were wasting away, muscles that were overused, and pressure on multiple nerves became a permanent facet of my increasingly difficult daily life. Gradually, I began to lose hope of ever climbing out of the morass in which I found myself.

This meant that I needed a lot of help. During the long and difficult phase of my recovery, miraculously, family, roommates, friends, peers, and even strangers showered assistance upon me. My mother bathed me, roommates did my laundry, peers shared their lecture notes and typed my term papers, and dining hall staff and friends carried my tray in the cafeteria. (I had no clue at the time, but I was destined to marry one of those helpers many years later.) Although these acts helped me physically, they made me despair of ever being more than a burden to those around me. With each gesture of kindness, I felt an ever-expanding emptiness inside, as I ached to repay the “debt” I was rapidly accumulating.

As I consulted physician after physician during the two years in which my condition worsened, occupational therapy once again was my one mainstay of support. The therapists guided me throughout my difficulties. They fashioned several hand splints that I wore constantly to relieve the burning sensation in my right hand. In fact, the splints were so integral to my daily attire that I replaced the muted, boring, tan industrial Velcro straps with ones that matched my clothes each day.

Suddenly, I was forced to rely upon my left hand for daily tasks, which had never before served as more than a “helper” to my right hand. To break out of the cycle of right hand overuse and weakness, I needed nothing short of a complete lifestyle overhaul. I urgently needed to acquire new skills, so I could depend on my fingerless left hand while restricting my formerly strong right hand to the unaccustomed helper role. Only when my right hand was fully rested would it be ready for restorative strengthening exercises. The recovery process would be long and difficult; I needed information and strategies, and most importantly, someone to guide me. Again I turned to occupational therapy. This time my experiences were much more diverse. In addition to splints, my occupational therapists introduced me to strengthening activities, gadgets that made life easier, and principles of building a balanced body.

The occupational therapists problem-solved with me, helping me to figure out how to pursue the activities that were important to me. They introduced me to catalogs filled with products that could facilitate activities that I could no longer perform. Between OT appointments, I spent hours poring over these catalogs, fascinated by the gadgets that simplified cutting vegetables, opening twist-off jars, stabilizing a dinner plate, and tying shoelaces. When I returned for my next visit, they would discuss the pros and cons of the various items on my list, allowing me to experiment with the ones they kept in the clinic as demonstration aids. They taught me how to incorporate these new tools into my daily routine; simultaneously, they taught me exercises to strengthen my now rested but very weak right side.

As I began to see signs of real improvement, occupational therapy gave me an even greater gift: a potential outlet for repaying my debt of gratitude. My early experiences with occupational therapy, reinforced by my more recent ones, had shown me how one caring therapist could ease another’s suffering, transforming another’s life. Now my fascination with the gadgetry of OT could be put to practical use. When I casually told friends that I was considering a career in occupational therapy, they cheered that I had found a calling that would allow me to channel my life experiences.

Since earning a master’s of science degree from the Boston School of Occupational Therapy at Tufts University, I have been treating children with developmental disabilities in Ohio. This work gives me ample opportunity to make my contribution to society. From my perspective, as I help a child with autism to use the toilet independently, as I assist a schoolteacher to accommodate a child with Down syndrome in her regular third grade class, or as I help a teenage girl with limited hand dexterity to manipulate a hairbrush, I’m whittling away at that debt amassed so many years ago. Sometimes the work is difficult. Sometimes my clients don’t want to do the therapy activities. Sometimes I emerge from a treatment session frustrated by our lack of progress.

All of my work, everything I went through, is made worthwhile when I see the smile of success on a little girl’s face as she picks up marbles for the first time ever with her “little” hand, and we both see her mother’s bittersweet tears of joy.

“A Debt Repaid” was published in the inspirational book, Ordinary Miracles: True Stories About Overcoming Obstacles & Surviving Catastrophes, edited by Deborah R. Labovitz PhD, OTR/L, FAOTA, 2003. Reprinted with permission from the book’s publisher. .

Posted in Essays, Writings