The story of Ron Hull, paralyzed in a surgical accident back in the dreaded polio epidemic days, was able to overcome most of the stigma and stereotypes and "pass for normal" for 30 years. As Ron's paralysis increased gradually through the next 20 years, Ron relied on "just in time" technology to enable him to continue to lead ann ever more dependent life independently on his own terms.
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A healthy young athlete and scholar, Ron Hull’s life changed drastically at 20 years of age. A myelogram showed that exploratory surgery was needed to correct a neurological problem in his neck. During the surgery on December 9, 1963, an accidental anesthetic overdose caused Ron's blood pressure to drop, with the emergency response and spinal hemorrhaging partially paralyzing his arms and hands.
After five weeks in the hospital, and nine months at home, contemplating his future, Ron received a stainless steel handsplint for his right hand so that he could write again and some federally funded rehabilitation money to return to college. Ron did not know at that time that his return to independence would only be the beginning of a lifelong struggle of 50 years where his paralysis would gradually become worse until he was forced to hire attendants and get into an electric wheelchair after 30 years of walking and passing for normal. Four diagnostic studies at top medical centers finally determined the cause of the deterioration to be neuron loss from aging of the remaining spinal cord Ron had left--there was no cure.
With every obstacle Ron faced, there seemed to be a new technology--he calls it, "just in time technology"--that Ron could use to overcome the problem, enabling him to work a normal career until he was 69 and stay healthy, much healthier than his contemporaries. This book is his story of overcoming and staying positive regardless of the odds against him. After writing this story for 21 years, Ron is finally revealing it.
Once, I visited my younger brother, Tim, while he was in college. He generously gave me his bed for the night. His idea of decoration was to hang the grille of his junked '69 Austin America from the ceiling by fishing line. The grille hung directly overhead, its sharp corner pointing at me like a Sword of Damocles. No matter how I changed my position, I couldn't seem to get safe from the thought of that line breaking and the grille spearing me in the face. I didn't sleep much that night.
Now, it is I hanging from the thread. And I don't sleep much thinking of it breaking and my body falling into that numb nothingness that comes with a lack of communication between the brain and the body, that point where I will still think, but be unable to act on the thoughts.
This is not a heroic story of overcoming great odds. Rather it is the story of one man's efforts to try to lead a normal life when an accident changed its course.
It may have begun before I was born. I was an identical twin. My brother Roger and I came from the same egg. We may have been joined at the spine as we developed, causing a deficiency in my neck structure as we separated some time before birth. Whatever it was, it was not obvious as I grew up. Our mother was only seventeen, so our birth that cold December day in 1942 was not easy. My brother was born with a concussion, and I suffered from scarlet fever and pneumonia before I was four. There was that time at two when Roger and I didn't know that tipping over beehives would be a problem. I don't remember, but my teenage mom and little friend, Rags, took the brunt of the bees' rage. Still, I grew and thrived, with a few childhood setbacks caused by several bouts with measles, influenza, and almost chronic winter colds. I managed to lead as normal a childhood as one can when you're a "cute" twin, considered to be a "brain" by your classmates. I did take books home for show but never did any homework. I’d just drop the books off, and then head out to play the faddish games our gang was constantly into.
I was the dominant one. To overcome the stigma of cuteness fostered by dressing alike and being the center of feminine attention, I was always exploring the limits of my physical ability and taking my brother into dangerous territory.
One time when we were seven, I watched Roger try to outrun a pickup while crossing Sixth Street. He lost the race and was knocked down and out. After an ambulance ride and stay in the hospital for his second concussion, Roger was okay. They said he darted out between parked cars, but I saw him run down the street when the truck didn't stop. But, just like the crowd around Roger as he lay unconscious on the lawn where the driver had carried him from the street, nobody believed his brother, a kid. It was only when I ran down the block to get our dad that I got anyone's attention. I had to stay home with my little sister while my dad rode with Roger in the ambulance to the hospital.
I was small, and slow to develop. But I compensated by taking almost any dare and priding myself in my speed, agility, and endurance. Until I was eighteen, I never got a stitch, or even a bad cut. Except in Cub Scouts, while Sumo (I didn’t know what it was—we just did it) wrestling squatting on a gym floor, I fell backward, stuck out my left arm and broke it above the elbow. I wore a metal splint that was easy to bend, and the break took a long time to heal. Later, in high school, I would break my left wrist. Both breaks healed quickly and I seemed indestructible. That would change, as all things eventually do.
Reach for the Stars
I wanted to be an astronaut. I don't know when I decided to seek that goal, but somewhere in the '50s I found out that I was smart, fearless, and resourceful––a natural leader who aspired to do something great with my life.
To me, riding rockets would be as easy as riding bikes, driving cars, and all the other things I'd learned to do on the first try. I knew I was different from the other kids, but I didn't possess any special talent for math, sports, music, or anything else that set me apart. Still, many times I pulled together my resources and excelled where I wasn't supposed to.
I remember learning to ride my bike without hands, like a unicycle. This is no great feat, but I made it more interesting. We lived in an urban neighborhood with sidewalks, driveways, alleys, and narrow yards. I worked out a path all around the neighborhood that I could ride without hands and avoid all the curbs, holes, bumps, and other obstacles that would force me to grab the handlebars. I worked in a spot where I would pull up to a stop sign, stop, look both ways, and then take a right turn. I could do this regardless of pedestrian or car traffic, never putting my foot down or touching the handlebars. No other kid could do it, but I could ride for hours on that course without stopping. At family outings, we all showed off feats of physical prowess. My father could hang from a bar by his toes. When my foot muscles proved too weak to do that, I learned that I could hang by my heels. No one else I knew could do that. The high point was when my uncle filmed me one time, hanging upside down from my heels, smiling and waving, ever ready to duck inward if I should fall to avoid breaking my neck. I never fell.
I loved to climb and climbed every tree in sight. I enjoyed challenges and learned to climb where there were no branches by hugging the trunk like a bear. I respected trees and didn't damage them like other kids did, carving and cutting on them. We never nailed steps on a tree or built a tree house.
Trees were living and growing and I just wanted to use them to get high for a moment. The trees must have respected me because I never fell from one. But then, I knew my body, and though I'd take a dare, I never tried anything that I couldn't do. By the time I was a teenager, I'd developed a technique that impressed the competition. I'd climb a young sapling twenty to thirty feet tall. By the time I'd get near the top, my weight would begin to get too heavy for the tree. By picking the side I was on and how high I climbed, the tree would bend to my will, usually to a clear spot without branches from other trees. The trunk would bend slowly at first, and then speed up as I headed toward the spot I'd picked. As the trunk bent horizontal I'd swing my legs free and hang from my hands until I gently reached the ground. Once there, I'd let go of the trunk and the tree would snap back into place, its top whipping back and forth, a little ruffled, a little over-stretched, but none the worse for wear. I especially liked this type of climb because the climb up was fast and easy and I didn't have to climb down. It sure beat sliding down a rough trunk, skinning up the insides of my arms and tearing up my jeans.
My first try at swimming was at the local YMCA in midwinter. I remember being very cold and unsuccessful on my first tries. I finally learned to swim when I was seven at the city pool in Wausau. I had almost no fat, so I couldn't float. Roger and I would go down to the pool, pay ten cents to enter, and spend the afternoon diving. I would dive into the two foot end of the pool, never touching the bottom except with my hands, and glide to where the water was about four feet deep. I would end up standing up to my chest in water. So, I learned to dive and swim under water first, and always found it more comfortable than trying to stay afloat. At nine, we took lessons, and I learned enough to swim twenty feet and pass the test. With enough ability to finally swim in the deep, ten foot, end of the pool, my first day out I headed for the high diving board. Since I didn't like the struggle to stay afloat, my time at pools was spent doing flips and other dives, and swimming great distances under water. I practiced holding my breath until I could stay under water for up to two minutes. Since I wouldn't float, even with air in my lungs, I enjoyed scaring people by swimming to the bottom and lying there, relaxed, until they became concerned that I was in trouble. Or I would enter the pool in a busy spot, swim under water to a distant side and sneak out, while observers couldn't see where I'd gone. It was fun to sneak back to where they were sitting and go to the pool's edge again where they'd seen me disappear into the water.
We started picking beans when we were nine. In July and August, Roger and I would meet school buses and cars at the school playground, ride fifteen to thirty miles to green and yellow string bean fields, and then pick beans for the farmer all day. Depending on the quality of the beans, I could pick 70 to 90 pounds in a day. We got paid up to 3 cents a pound and were happy for it. Although I usually picked more than Roger, I was envious of the 15 and 16 year old girls who often picked over 100 pounds. Finally when I was 13, the beans were especially good one day and I picked 105 pounds, not enough to beat the big girls but more than ever before. Then, one day that summer, the farmer offered a 50-cent bonus for the most beans picked. I tried my best that day and picked 100 pounds, more than anyone else, and proudly took home $3.50 for my ten-hour workday. Mom had us put the money in the bank in our savings account. It helped buy school clothes in the fall.
Bandura proposed a theory of single trial learning. Through experiments with monkeys and babies, he observed that only humans and monkeys possess the ability to learn a set of complex psychomotor motions by observation and imitation, and then repeat them in one try. Without lessons, that's how I learned to ride a bike, dive, water ski, and many other things. I built up a repertorie of psychomotor skills by the time I was nine or ten so that I could just do things that others required lessons to learn. From an early age, I stood on the seat behind my father and watched him drive. So, at the age of nine, when he let me drive his '54 Ford out in the hay field, I already knew how to drive. As I "soloed" my first time out, I waved at my grandfather when I passed him on his tractor. I had no difficulty with the car, but when I returned from my tour, I overheard my dad being chastised for, "...Letting those kids drive!" I had to wait after that until I was sixteen and had completed Drivers' Training before I got behind the wheel of the family car again. I tried hard enough in Boy Scouts to earn merit badges in swimming and life saving, but it wasn't until I took a required swimming course my freshman year in college that I learned how to swim. The instructor, Mr. Johnson, a strict disciplinarian who was also the athletic director and a sports legend, told us that no one would pass the course without learning to float. I tried and tried, but never floated. But I learned to swim. I left the course with an "A" and a new found sense of security in the water.
I hadn't let that bother me though. My mind always seemed more mature than my body. By the time we were fourteen, Roger and I were Explorer Scouts and spent a week at the wilderness explorer base on the Flambeau River. Part of the week was canoe training and a two-day, sixty-five mile trip down the river. It had rained a lot and the river was nearly at flood stage. We had a wet, wild ride, and water flew high over the bow many times as we dove over five foot drops, but we never swamped. I learned to avoid rocks and dangerous spots that would swamp or wreck a canoe. It was cold and wet and hard work, but we weren't afraid of the river. Our worst problem was sunburn.
The next summer we joined an elite group going to the Quietico-Superior wilderness area, a region of thousands of glacier-created lakes and rivers as primitive as it was when the first French voyagers came there in the 1600s. Our group consisted of an adult leader and six scouts in three canoes. Roger and I were the smallest, weighing in about 80 pounds each. One scout who was a year older and more mature-looking was elected the group leader. The guys paired off. Since our canoe was the lightest in the water, we got a rider and the heavy food pack. A route was charted that would take us in a loop extending 97 miles over six days. The first portage was the toughest, because we had never carried a seventy pound canoe before, but the food pack was a ninety pound killer too. Somehow, I managed to prop the canoe up against a tree, get under it, lift it to an unsteady balance on my shoulders, and walk unsteadily the hundred yards of rocky, sometimes muddy, trail to the next lake. Roger complained of the agonizing weight of the food pack. By the end of the trip the food pack was light and Roger was able to carry the canoe, unassisted, over a five-mile portage. I was proud of him; I couldn't do that.
The adult leader insisted that we rise at 5 am each morning. Most of us were reluctant to get up because we had spent the night in scout issue tents without mosquito netting. It was August and quite warm, and the mosquitoes would come up in clouds and attack us most of the night and sometimes during the day. Crawling down into our sleeping bags worked for some, but it was too hot and exposing hands or faces resulted in numerous bites. So, I came up with a solution. I dispensed with the tent and placed four tall stakes in a square pattern at the head of my sleeping bag. I put my spare wool blanket over the stakes, making a small tent over my head. It was still too hot, and the sound of thousands of mosquitoes buzzing just overhead above the blanket was unnerving, but soon everyone was following my lead. The adult leader had a pup tent with netting, so he didn't have problems sleeping.
Each morning was a race to see who would lead and the others would paddle way ahead. But both the adult and chosen leaders, capable of carrying their canoes and packs quickly over portages and paddling to the lead, got us lost the first couple of days. After that, they gave me the map, and I navigated from the physical characteristics of the landscape for the rest of the trip. We never got lost again and made good time with my estimates.
Starting so early and pushing so hard resulted in everyone stopping to rest about 2 pm. They literally fell out and went to sleep when we arrived at the chosen campsite. No one wanted to cook supper, so I took it upon myself to cook the meals. After I gathered wood, built a fire, and cooked a meal, they would get up one by one, and eat. We saw much evidence of bears, especially among wild blueberry patches. But we were spared a confrontation, perhaps because food was so plentiful for them that time of year.
The way we were traveling put us behind schedule. One day the wind was to our backs and we were on a thirty-mile long lake. I lashed a mast in camp. Everyone laughed at my crude attempt at sailing as they took off, way ahead of us. I rigged a sail made from a tarp. By holding the mast up with my feet in the front of the canoe, and holding ropes tied to the bottom of the tarp, I sat back and caught the wind while Roger ruddered with a canoe paddle in the rear. Soon, we overtook the others. The adult leader called us over, had us lash the three canoes together, put up another mast and a poncho for a second sail. We were off for a wild ride as the wind and waves increased. We had to lash canoe paddles together to keep them from bending to the breaking point as our tri-hulled sailing machine raced the shoreline. It was exhilarating and tiring, and when the cool wind blew away the mosquitoes, we slept well that night, dreaming of the thirty miles we'd made without paddling.
About the half way point of our trip, we camped with another group on a rocky island. We caught some fish and our leader cooked them. There was a cliff on the island and we started to use it to dive the thirty feet or so to the deep water below. I remember having to dive way out from the slightly sloping outcropping to avoid hitting rocks below, punching the water with a tremendous blow to my hands and head, coasting deep into the cool, clear water, swimming down twenty feet or so until it was dark, and then, without reaching bottom, swimming upward to the light of the surface. At one point I was standing on the edge watching someone below when one of the guys, I don't remember who, jokingly gave me a push. I couldn't dive from that place so I turned toward him. My feet slipped off the edge and I fell. I caught the ledge with my chest and outstretched arms and a chill ran up my spine. I remember yelling at the guy about how dangerous it was and pictured myself mangled on the sharp rocks below. We had no radio, and it was three days hard paddling to the nearest road. It was no place to be hurt. I didn't tell the leaders what happened, just told the guys not to horse around on those dangerous rocks. Except for sunburn, numerous mosquito bites, paddling blisters, overstrained young muscles, and an insatiable desire for hamburgers, we returned uninjured and better men. I knew I that I thrived on the opportunity and adversity the wilderness presented, and that I could lead, even though I had to accommodate those who were more experienced, older, or physically stronger.
In the beginning, I'd also wanted to be an architect. There was no conflict in my mind that I could be an astronaut and an architect, too. From an early age, many of us in Wisconsin had heard of Frank Lloyd Wright and we wanted to create a new modern world where vehicles and homes would burst the bounds of tradition and emerge into an image created by Buckminster Fuller, Walt Disney, and Werner von Braun. From grade school through high school, I expressed my desire to become an architect. It was safe and respectable. No one in our immediate family had gone to college, so architecture as a profession seemed to be more like a far off dream, unattainable without a special talent, or the backing necessary to enter a school like Wright's. I was good at drafting and, more important, I did well in all my studies: English, math, physics, and chemistry. Still, I possessed no special talent or accomplishment that would catch the eye of a good school or sponsor. Instead, by the end of high school, I was eleventh in a class of 129. I won a small two-year Kiwanis Club scholarship. I was advised to attend a small technical college where I was assured a good education and a good job after four years. College also provided a draft deferment most young men my age were seeking from the Vietnam War.