Bill Powell —
My wife and I recently discussed Pearl Buck’s classic novel The Good Earth and tried to recollect whether, and when, we might have read it as children. We are both “bookish” people and have been so since childhood. We also discussed our early reading habits, subject preferences, and how they have evolved and continue to this day. I mentioned that during one particular spring and summer I spent many afternoons and evenings in bed reading by window light. Every day I would read one or two books. Probably, I said, I’d read it then. She asked why I’d read like that.
We don’t always anticipate what triggers the recall of events. I didn’t recall the exact year, but it was at the onset of puberty for me. I began, like all my age-mates, to grow taller, thinner, and my voice deepened. I became more impulsive and temperamental. Since starting first grade, I had been a regular visitor to the library in my small Indiana town and those visits continued unabated until I went off to college. During the second grade I began reading old classics of literature because I was told they were important books. But, in adolescence, the visits began to be spaced out more and I brought more and more varied books home at any one time. It was during this period of general growth that my back and neck began to hurt all the time and I could find no way to sit or sleep comfortably. People who knew me began making more comments about my bad posture; it also became more tiring to do things that required lifting and bending. At first there was a general sort of ache in my body’s upper trunk and then it also became more localized to neck and back in the space between my shoulder blades. My head and neck began to tilt forward and it was an effort to hold them upright. The upper curve of my back began to bulge out and tilt forward and down in the process of becoming a hump. Seemingly, my physical endurance began to wane—would be short of breath during any exertion and my chest would ache. I was more “ungainly” as they said back then.
On many levels, life at that time was otherwise normal, though we were rather poor and periodically went days without eating. School was just school—a thing all small town kids did. I roamed the countryside, went to church and Scouts and they became a source of social activity in the summer—hay rides, swimming trips, camp, reading, rock collecting, rocket building, and different activities. But, physical changes like the curvature of my back changing and pain and my neck curving forward and down began changing my social, behavioral, and emotional life. I became different than other boys.
At some point, my parents were so sufficiently worried by my physical change that they borrowed a car and drove me to a small nearby city with a medical clinic and a physician with some awareness of bone and back issues. He examined me and told them that I had something called Scheuermann’s Kyphosis, which is a condition where, in childhood and adolescence, the vertebrae of the lumbar and thoracic spine grow abnormally in a wedge shaped fashion. To a lesser extent I was also developing Lordosis and Scoliosis—an exaggerated inward sway of the lower back and a sideways twist common to Scoliosis. My neck was bending forward and down, the upper back outward into a hump and the lower spine (in my case) inward so that the sway is outward above and inward below and not in a line from top to bottom. As is not uncommon, my rib cage also became more rigid and would expand less when I needed to breathe more. In a normal situation I could breathe fairly adequately, but I could not respond to any demand for more or deeper breathing. My leg movements were affected by pressure on nerves in my back. I could walk, but walked more slowly and had an awkward gait that led to falls and general unsteadiness. Perhaps, fortunately, these changes happened over a period of several months and I had time to adapt, pace myself, change my gait, and otherwise disguise them.
After the initial examination another appointment was scheduled in a few days and when I returned I wasn’t prepared for what was to happen. I was expected to lower my pants and underwear in front of people and lay down and balance myself while straddling a wide strip of thick felt that was strung between two tables and then try to balance myself there. As I tried that, the physician tightly wrapped and taped more felt around me from crotch to arm pits. My embarrassment was profound because there were a number of women in the room. Next came the plaster soaked bandages which were wrapped tightly around me about ¾ to 1 inch thick. The plaster hardened fairly quickly and I was encased in a white shell, a cocoon. They stood me up. I could not button my pants because my girth had greatly increased so I wrapped my shirt around my waist before I left. It was difficult to bend or twist or stoop down. It was becoming ungodly hot most of the time because the felt retained heat and it was the beginning of a long hot and humid Indiana summer. At home, my clothes no longer fit and I could barely even put on my own socks and shoes. I was told that the cast would be on for several months until my muscles shrank and could be realigned to help arrest the progress of spinal curvature.
I avoided going out in public because of the plaster “tub” around me and because I had few acceptable clothes to wear. The cast soon began to stink from the perspiration and putting baby powder down it helped only a little. There were no showers or tub baths, only washing with water, rag, and soap. I was becoming noticeably irritable. Finally, mom suggested I get out of the house and go on a hay ride with other kids and so I agreed. It was windy on the hay wagon as it was towed by a pickup truck and the hay and chaff swirled and soon covered everyone including me. A bunch went down between the cast and me and filled the space. It was itchy and miserable and was to be a source of irritation all the remaining months I wore the cast. The summer became hotter and I was always sweating copiously; I also worked in the garden and dirt went down the cast. The felt retained it all; there was no way to wash my skin inside the cast and it became quite raw where it rubbed. Skin began to flake off. This went on for several months until the cast itself began to break down and crumble. It was finally cut off and when it was removed I flopped over because the muscles in my back and abdomen had become so weak; it took a few hours to stand erect again. I had grown taller and a little thinner and looked and felt like a gaunt, homely, mess.
I was then given a stout corset to wear for two years—it was a tight canvas affair with metal rods in the back and laces to tighten and snaps to snap tightly. It was, in effect, like the plaster cast but could be removed at night and washed. In gym class it was an embarrassment and I was royally teased. Once, while wearing it, I decided to participate in a pick-up game of football with a few other teens. I intercepted a pass and was tackled by another kid who landed on top of me. I fell on a large rock below the metal rods but just above my tail bone. I immediately lost feeling and movement in my legs; a couple of disks in my back were apparently herniated. Slowly, after laying there a few minutes, feeling and movement began to return. The feeling that returned was mostly extreme pain and there began much noticeable swelling and bruising that persisted for about 2 to 3 months. My classmates picked me up and supported me until I could move again, albeit unsteadily. I often lost feeling and movement from the waist down for years whenever I sat wrong or fell. I never told my parents the details; I didn’t want to worry them and wanted to seem “normal”. But, following some of those minutes of paralysis, movement always returned. Over a period of years, my walking began deteriorating. The occasional sudden loss of feeling still happens to this day, but less frequently. The cast and corset didn’t cure my spinal curvature, but they might have kept it from getting worse. Over that summer I’d become a little like Quasimodo, the hunchback.
I tried out for the track team several times, wanting to be and be seen as “normal” but could never run more than 100 to 200 yards. My chest wall was fairly rigid by then and could not expand when I needed more lung capacity. I simply ran out of air. That problem with endurance has persisted to this day, but what I learned was to be determined and to just pace myself. Pace myself! Keep going, but just do so more slowly. Be persistent. My grandfather called that “cussedness”—the darn need to just keep at something until it was finally done or to ‘just put one foot in front of the other and keep going. That stayed with me and I generally need to walk slowly and deliberately; it’s hard to walk with others because I usually can’t keep up. But slow walking allowed me time to notice the detail in things. I was also a smart kid and, mostly, I developed quirky humor—angry humor, deadpan humor, strange offbeat humor but humor nonetheless. It was “dry” humor from my mom, off-color humor from my dad, and a wry but florid metaphoric humor of my own invention. I was funny but irritated and angry a lot. I also developed a straight face—not to laugh, be openly angry, or show any emotion; it was a way of hiding. I’m told that my stoic, unsmiling, face has stayed with me. I like to think that I smile on the inside.
I also learned to disguise my condition—being crooked. I sit down and slide my butt forward on my seat and lean back so my neck then points straight up and my face looks directly ahead. I buy large shirts. I make eye contact and few people notice the slant of my body or my odd sitting style. I adopted a left arm across my abdomen style of sitting wherein my right arm and elbow rest on my left arm and my right palm cradles my chin and holds my head up. If I don’t hold my head up that way the pain in my neck is soon intense. People say I never smile and look “closed off”, but it’s better than a grimace. When I drive I lean the seat back so my neck and head are straight up. When others drive my car they always have to bring the seat back upright again. Life goes on. With my inward struggle with anger and sense of foreignness and awkwardness and pain I’ve become crabby and shy about my looks. My voice lacks volume and the sound doesn’t carry. Nonetheless, I managed to lecture as a professor for 25 years and hide my pain and tiredness. I have a lot of interests and do a lot of things, have always had ADD, and am impulsive; I’m usually tired by day’s end. It’s hard work compensating for something others rarely even notice. The few other people I’ve met who have Scheuermann’s Disease all complain of the same things-acute and chronic pain, endurance, walking irregularities, and worries about body image. Most of them get a bit testy once in a while.
There are a heck of a lot of more difficult things for people to deal with, it’s just one of the many vicissitudes of life that we all have to cope with. We all carry burdens. It’s no one’s fault and for folks like me there’s no free ride in life but there’s a lot of beauty and mystery in people. I’ve learned to love and laugh and do creative things, make friends in spite of it all. I hide it in plain sight except when I stumble—that’s hard to hide. That said, I’ve learned to notice details in places and things others don’t. I’ve learned that the world is woven together by metaphors and analogies and cognitive duct tape, and that others have their own dragons to slay and their own hidden jewels to search out. I’ve grown old with a secret most people can’t see. One long summer in my youth, my life changed and my narrative thread curved. I held my head up and moved on. I feel blessed, in spite of it all.
William (Bill) Powell (Author) – PhD, MSW, and Professor Emeritus of Social Work, University of Wisconsin-Whitewater. He is Editor Emeritus of the journal Families in Society, with many publications and presentations at international and national conferences, and awards for teaching, contributions to Urban Education, and professional presentations on phronesis or practical/practice wisdom and artistry in practice.