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40 years!!

Posted Jan 11 2013 6:43am

A 40-year survivor

In honor of achieving 40 years survival after diagnosis of Osteosarcoma in January of 1973, I am herein going to publish chapter one of my book Who Says I Can’t in its (somewhat long) entirety. On this site, the book is for sale as it is on Amazon.com.

 

It didn’t seem like a life-changing event when it happened. It was October. I was sixteen, jumping rope in gym class at Groves High School in the Birmingham suburb of Detroit. While in midair, my right knee locked up as a searing pain shot up my leg, and I fell, writhing, to the cushioned mat. The class froze, sensing this was no minor injury. The pain was like nothing I had ever felt. It was blazing, sharp, and intense, focused in my knee, but with electric shock waves radiating up and down my entire leg if I moved it even a hair. After a while, I was able to get up with help, and the school called my parents to take me home.

Like always when we had medical issues, my father, a surgeon, was our primary physician. He examined me in our family room and saw no cause for alarm. “This is what happens to big, fast-growing boys who are very athletic,” he said. “Your knee hurts. You fall. You twist a joint. It needs to be iced and wrapped for support, and then you take it easy until it heals.” That was the diagnosis. He expertly wrapped my knee in an ace bandage, and just as he had said, it improved a little each day. 

Soon I was playing touch football, working in the yard, and running around our neighborhood. My strong, young body did a brilliant job of compensating for and adapting to what we did not know at the time: I had an extremely rare form of bone cancer that was destroying the healthy cells of the femur in my knee joint. The bone structure was disintegrating. 

A few weeks later in November, at home in the yard, I was heading to the barn and needed to get over the paddock fence in a hurry. At the top of the fence, my knee locked up again. I fell, and it was even more painful this time than the incident in gym class. I landed in a lump on the other side. It took a while before I could get up and limp back to the house. Dad wrapped it again and said I really had to take it easy this time to give it a chance to get better. I promised I would, and I meant it because this was getting to be a drag.

We had an amazing golden retriever named Lobo. He was officially my brother Michael’s dog, but since Mike was off at college, Lobo became my constant companion. He was smart and well trained. I became the one who took him to a field for a run after school every day. I loved those runs. I was so proud of him, and he was a great substitute for not having any close high school friends since I had recently moved to a new school. I talked to him constantly while we wandered together through our favorite hiking area. He was so smart that I could just gently speak simple directions and he knew what I meant.

Christmas vacation came, and on a wet, icy day, Lobo and I drove over to Franklin Village Green—a field about a mile from our house—for an afternoon walk. Although my knee was still wrapped, I was walking well, if a bit stiffly.

It was raining, and water was standing on the icy patches all over the Village Green, making it as slippery as a Teflon frying pan. Lobo blasted out of the car like a golden rocket. He was obedient to my voice commands, so I never leashed him. A proud, aggressive dog, he bounded through the field, sniffing and marking his territory. I opened my umbrella and followed him, gingerly traversing the slick ground. 

Two hundred yards into the field, I hit an ice patch and my feet slipped out from under me. I must have looked like the cartoon character that slips and hangs suspended horizontally in midair before crashing to the ground. The pain from my previous falls didn’t begin to compare to what I felt this time around. It was hard to breathe. I saw stars. It was raining and I had fallen into a puddle, which is probably all that kept me from going unconscious. 

Lobo came right over and stayed by my side as I crawled and dragged myself back to the car. My right leg was useless, in excruciating pain. I struggled to lift it into the car and stay conscious. The car had a standard transmission, so I used the umbrella to press the accelerator and my left foot to work the clutch and brake. When I pulled into our driveway, I blasted the horn and kept blasting. The look on my father’s face as he came running from the house took my breath away; it conveyed that he had—perhaps subconsciously—feared something like this might happen. 

“Same knee,” I managed to croak out when he asked me what had happened. “Hurts so bad. Can’t walk.”

No bothering with an ace bandage this time. My parents mobilized into a flurry of activity to get me into the hospital for a biopsy that night. I suspect they (my mom especially, being a pathologist) had a suspicion that it was bone cancer. Not wanting to worry me before they knew for sure, they didn’t tell me anything. Being a sixteen-year-old, I assumed immortality. I did not think horrible things could possibly happen to me. Parents always worried too much, so I discounted their grim faces.

My father wrapped the knee tightly for the drive to the offices of Dr. Angelo Giambertoni, “Dr. G.” I called him, in downtown Detroit.

Dr. G., Detroit’s top orthopedist, quickly examined me. X-rays clearly showed the tumor and the irreparable damage the cancer had done to my knee. Still, my parents and Dr. G. needed to be certain. 

On the short drive to Grace Hospital, my mother, a pathologist who specialized in tumors, explained that I needed a biopsy of the femur. 

“During the biopsy,” she explained, “a long needle is inserted into your leg bone to take a very small sample of tissue from the femur side of the knee for analysis so we will know for sure what’s going on in there.” 

 “You won’t feel a thing,” my father added. “You’ll be under general anesthesia. It’s quick, so you’ll only be out for a short time.”

The hospital quickly admitted me, and the nurses whisked me into surgery. I awoke to find my parents and Dr. G. hovering over me. 

 “I’m afraid we have some very bad news,” said Dr. G. “The biopsy came back malignant, which means we have to amputate tomorrow at 7:00 a.m. Nurses will be here momentarily to begin prepping you for the surgery. Any questions?” 

Malignant. Cancer. Amputation. Any questions? Was he kidding? I looked at my silent parents, who wouldn’t make eye contact with me.

“It’s just a sore knee from being a big active kid,” I sputtered, throwing my dad’s original diagnosis back at them. “I promise to be more careful with it in the future.” 

I knew in my heart it was much more than that, but I wanted to buy time. 

“The biopsy is definitive,” Dr. G. continued. “It reveals the presence of a type of bone cancer called ‘osteogenic sarcoma’ in the femur side of your knee. We have to take your leg off above the knee to get the cancer out, and we have to move quickly so the cancer cells don’t enter your blood stream and spread.”

In my simplified view of the world, smoking caused cancer. It afflicted old people. How could it be inside me? Oh my god, Dr. G. wants to cut off my leg! I was beyond petrified. Dr. G. was waiting for my consent before he put the staff in motion to prep me for surgery.

“I’m not letting you take my leg unless my mom tells me there is no alternative,” I said. 

My mother would realize my condition was not all that serious when she looked at the biopsy, I was hoping. I had total faith in her. Over the years, I had heard her colleagues gush about what a rock star doc she was. 

It may seem cruel and self-centered to have involved my mother, but anyone going through the kind of mental anguish I was should be allowed to be selfish at times like these. The newly disabled, those diagnosed with life-threatening illnesses, and those who have suffered a tremendous loss need time within themselves to recover psychologically. That kind of self-centeredness is crucial to reclaim one’s life. If you don’t focus on yourself, you may not find the inner strength you need to fight back.

My mother obtained permission to look at my biopsy tissue, although I was not officially her case. I waited anxiously for her return, hoping she would spare me. 

Mom had a commanding presence, thin and standing six feet tall. She was stoic—a reserved New Englander who rarely showed emotion. I had never so much as seen her shed a tear, but when she returned to my room, she was pale and trembling. She stood next to my hospital bed, and I will never forget her words. 

“Jothy,” she said, “there is no choice but to amputate your leg.” 

My father, typically a pillar of strength, was also on the verge of tears. Seeing them struggle to keep their composure terrified me. I began to weep, and at that point, they couldn’t hold back their tears any longer either. 

I just barely regained enough composure to give Dr. G. my formal consent to amputate my leg. 

My mother reiterated that the cancer could get into the blood stream and latch on somewhere else, which is why the surgery had to happen immediately. I assumed the chance that the cancer had entered my bloodstream was remote and that they just liked covering their bases, no matter how unlikely the scenario. Little did I know.

I would later learn that my type of bone cancer, osteogenic sarcoma, now more commonly known as “osteosarcoma,” strikes only one thousand people in the United States each year, almost all of them teenagers. It is fifty percent more likely to occur in boys than girls, possibly because it may be related to rapid bone growth. It is deadly. If the cancer cells get into the blood stream, they like to metastasize to new sites. “Metastasize” means to spread from one part of the body to another. When cancer cells metastasize and form secondary tumors, the cells in the metastatic tumor (euphemistically called “mets”) are like those in the original (primary) tumor but are attacking different tissue. With many types of cancer, the most common site for mets is the lungs, which are the first place cells land after venous blood returns to the heart. 

In 1973 and before, when this particular cancer metastasized to a lung, it was a death sentence. My physician parents both knew this, but I would remain oblivious to that frightening eventuality for three more years. As they looked down at their weeping son, I now understand that they saw not just the loss of a leg, but also the potential loss of their child. 

That night a busy dance of nurses, orderlies, aides, and doctors began to prep me for next morning’s surgery. I would have no food or drink. I was heavily sedated so I would sleep. Early the next morning, the dance started anew as final preparations for the frightening, life-changing event that was about to occur. My parents, who exuded an overwhelming sense of sadness, had to stay out of the way. I was on strong pain meds, sedated to blunt the inevitable terror of what was coming. They put me on a gurney and wheeled me to the operating room. Someone placed a mask over my mouth and told me to count backwards from ten. I never even got to five.

As I began to regain consciousness from the deep fog of anesthesia, I found myself in a dark, quiet recovery room. All I could see were curtains near my bed and some nurses studying monitors and papers on their desks just across from where I was laying. The only sounds I could hear were machines making quiet, high-tech whirring and beeping noises. I knew what was supposed to have happened, so I looked down. Indeed, it was gone. A large bandaged stump was all that was left of my right leg. The anesthesia numbed my shock and horror of that first sighting, but an overwhelming sense of loss and sadness settled over me. Although my brain was too foggy to crisply analyze the situation, the nurses focused me on practical matters right away. Unless I could pee on my own, they threatened, they would insert a catheter to drain my bladder. Two sets of strong arms stood me up on my one leg. I was weak and dizzy, but finally I was successful. 

From the first moment of consciousness I began to set goals. Peeing on my own was actually my very first one. At least, I thought, I have been able to accomplish that. It was something on which to build a return to a normal life. It was here that I first realized I needed to set many little goals that I could challenge myself and succeed at. Accomplishing many little things soon adds up to some pretty big things.

I desperately wanted to be normal. For the newly disabled, normalcy is an elusive dream. It is like grabbing for the Crisco-covered watermelon in the pool games I played at summer camp. You can see the watermelon. You can touch it. But, the moment you grab hold of it, it squirts away, and you have to chase after it all over again. 

The feeling of being normal is especially important to the child or teenage amputee. Being part of the group and able to do what the rest of the kids are doing is vital. But, sports, dancing, and dating seemed completely out of reach for someone looking down at a stump where his leg once had been. 

As I was grappling with my new body, trying to pee, and dealing with the horrible feeling in my gut that I would never again fit in, I also had to face the fact that the amputation had gone horribly wrong. 

As it turned out, Dr. G. usually did amputations on elderly patients with poor circulation and weak muscles. He was unfamiliar with strong, young legs with normal blood flow, and, because of that, he had almost lost me on the operating table. 

With elderly people who have poor circulation, a tourniquet placed above the cut line for the amputation is sufficient to stop any bleeding. For a leg with healthy musculature and vasculature, however, the accepted technique is to cut incrementally toward the bone, tie off all the major blood vessels, and then cut a little deeper. This procedure is much more time consuming than using a tourniquet, which may have been one of the reasons Dr. G. elected not to use it. 

As Dr. G. must have quickly discovered, however, it is difficult to secure the air-filled tourniquet around well-toned muscles. Worse, because one’s thigh narrows as it gets closer to the knee, the tourniquet has a tendency to slip downward. When that happens, the tourniquet loosens, taking pressure off the deeper arteries in the lower leg. It is still tight enough, however, to occlude the venous return vessels that are closer to the surface. That, in turn, raises the pressure in the arteries, causing them to bleed even more profusely. 

The old rule of thumb when doing an amputation for bone cancer was to make sure there was a joint between the amputation site and the cancerous bone. That would have meant cutting my leg off at the hip. Wearing a prosthesis with no stump at all is problematic, so Dr. G. elected to leave me with part of my thigh, but still cut high enough up the leg to put some distance between the cut point and the tumor. When the tourniquet slipped and the bleeding increased, I was continuously transfused as Dr. G. raced to finish the amputation. On the table, I bled out six of my sixteen units of blood and ended up with a five-inch stump, which is way too short to work well with a prosthesis. 

To make matters worse, Dr. G. bent my leg at the hip so it would be easier to work on. Imagine laying flat on your back with your legs straight out. If Dr. G. had amputated in that position, my stump would have lined up with my upper body and left leg. Instead, he bent my right leg, flexing the hip, and removed it midway between the hip and knee as he tied off all the muscles. This made the bend in my hip permanent, and it has been a nightmare for me ever since. In the language of amputees, this is called “flexion contracture.” The muscles in the front of my leg are tied off shorter than the muscles in back, and no amount of physical therapy or stretching can ever make my residual limb (or stump) stay straight, which makes fitting a prosthesis exceedingly difficult. 

Giambertoni’s mistake resulting in a cut so far up the leg had other bad long-term ramifications. Every millimeter of residual limb becomes vitally important for leverage inside the socket of an artificial leg. The more leverage, the more control. The more control, the less limping. My short, flexed stump has given me a pronounced, unavoidable, and permanent limp. But by far the most important issue to an amputee with a prosthesis is comfort. Unavoidably, skin has to ride against plastic and, because of the bend Dr. G. created in my stump, the load of all my weight sitting on the plastic socket could not be equally distributed around the entire circumference. Most of my weight went to the back, and the skin there took the brunt of abuse year after year.

I suppose I should still be really angry at Dr. G. I certainly was once I understand what was possible and how badly he messed things up. But after almost 40 years of not being able to change what he did, it has just been too long to hold this grudge. I do like to talk to young orthopedic surgeons and tell them about this to make sure they are not repeating his mistakes.

I wish I could tell you the mechanical challenges of the amputation were the extent of my challenges, but the extreme blood loss and excessive tourniquet tightness, as well as a fight against time to finish the amputation, caused an unusually high degree of tissue trauma, massive swelling, and bleeding—all of which contributed, post surgery, to horrific phantom pain. 

Calling pain “phantom” makes it sound unreal. Let me assure you, it is very real; it is a cruel joke at the expense of the amputee. Fifty to eighty percent of the almost two million amputees in the United States feel as though they have pain coming from a body part that no longer exists. 

American military surgeon Silas Weir Mitchell first coined the term “phantom limb” in 1871. However, it was much earlier, in 1551, that French military surgeon Ambroise Paré wrote, “For the patients, long after the amputation . . . say that they still feel pain in the amputated part.” Until the past forty years, many believed this post-amputation phenomenon was a psychological problem. Amputees were told that if they felt sensation (including pain) in a missing limb, they had mental problems and should see a psychiatrist. 

It was not until the early 1970s that researchers learned from brain mapping that the nerves firing in the residual limb after an amputation are transmitted to the somatosensory cortex, the part of the brain responsible for the movement and exchange of sensory and motor information, including pain. For the first time, the medical community was admitting what amputees always knew: the pain from these traumatized nerves is just as real as the pain you feel when you cut your finger with a knife.

The part of the somatosensory cortex responsible for phantom sensation is similar to a hard-wired telephone switchboard, with a plug for every nerve coming from the body’s surface. This area is not part of the conscious brain, and it does not know where its signals originate. A signal from a nerve on the stump that once extended all the way to the foot is routed through the somatosensory cortex, which tells the conscious brain there is a sensation in the foot. The conscious brain, which knows that the foot is gone, is powerless to override these signals. 

Phantom pain can feel like burning, stinging, or, worst of all, shooting electric shocks. It is worse in people who experience extreme pain before or right after their amputation. It is now recognized that pain management in both cases is critical. Jonathan Cole at The Wellcome Trust, who has studied phantom pain extensively, describes it in a blog post aptly named Phantom Limb Pain, as “often excruciating and almost impossible to treat,” adding that it can be “intractable and chronic.”

Phantom pain is quite resistant to standard types of pain medications. Yet the pain for some is quite intractable, so it would be ideal to find some effective treatment that has no side effects or risks. Some think that such a treatment may be found in mirrors. Mirror movement therapy consists of patients watching the reflected image of their intact limb in a mirror while they move both feet (including the one that doesn’t actually exist) simultaneously. The theory is that perhaps mirror movements simply convince the brain that all is exactly as it should be, which removes the brain’s need to evoke pain. As Lorimer Moseley wrote in 2008 in Scientific American, one theory is that, “Mirror therapy is a great distracter: distraction remains our most effective analgesic.” Alternatively, under normal (non-mirror) circumstances, he writes, “Feedback from the nerves that used to supply the missing limb tell the brain that the limb is still present; visual feedback tells the brain it is not. Thus mirror movements bring visual feedback into line with sensory feedback” and trick the brain. Such trickery can be made to become permanent, some have found. No such luck for me. 

In my case, the phantom phenomenon—sensation and pain—has turned out to be permanent and immune to the mirror therapy. Almost forty years after my amputation, I can still try to wiggle my nonexistent toes. My stump aches and tingles, sometimes severely, almost every night, which makes me a poor sleeper. Sometimes waves of what feel like high voltage electric shocks shoot through my body, reminding me (as if I needed reminding) of the trauma of my operation. Occasionally, these debilitating waves can last an entire day, completely taking me out of commission. There is no rhyme or reason to when a bad day is going to occur. Psychologically, phantom pain drains you; you feel like you already “paid the price,” and yet the pain never lets up. You keep paying and paying. Sometimes it makes you want to scream. Or cry. 

Once I came out of anesthesia from surgery, I needed the strongest (narcotic) painkiller possible, but I was given Demerol instead. In 1973, the medical world, fearing putting patients on narcotics would turn them into drug addicts, routinely prescribed the drastically inferior Demerol. I was sure glad when my father assessed the situation bedside, didn’t hesitate, took charge, and changed the orders on my chart to morphine, even though it clearly violated medical protocol. On Demerol, I had been sluggish, cloudy, dazed, and still in agonizing pain. On morphine, I was clear-headed, sharp-witted, and the pain was almost gone. It is now generally accepted that narcotics administered for pain, and only for a short time, especially when self-administered, do not cause addiction. 

The hospital staff stood me on one leg so I could start relearning balance and be able to pee without support, but, as hard as I tried, I could not remain upright without my crutches. My body and brain played tricks on each other. My brain remembered how balance felt before the amputation when I had stood on one leg while I still had the other leg to move around as a counterbalance. Same scenario but with no right leg, and it sent the same signals as it always had to the muscles in both my legs. The muscles on the left side did as they were told. On my right side, however, there were no muscles to receive my brain’s signals. As I tilted to one side, my inner ear became unbalanced and sent that signal to the brain, which would futilely try to get my missing right leg to do its part to regain my balance. Thankfully, the brain relearns quickly, and within weeks I was balancing unconsciously again.

I had the weird idea, when I began to think more clearly, that they should weigh the amputated leg. I wanted to be able to quote an extrapolated weight. Dutifully, they reported that my limb weighed twenty-five pounds. Today, when someone asks me how much I weigh, I have to figure from three different possible answers: my as-is, no-clothing, one-legged, six feet two inch weight is 185 pounds; my two-legged, extrapolated weight is 210 pounds, which more closely resembles what people think when they see me; and my weight wearing my prosthesis is 197 pounds. The one I usually quote to avoid confusion is the extrapolated, guesstimate weight.

As I began to recover, I started asking questions. When would I get a prosthesis? How long would it take to relearn how to walk? Would I be able to ski again? Ice skate? Sadly, no one could give me answers. 

When I told my first joke, which was silly and a little morbid, people acted as though it was a huge big deal. “You finally found a cure for the athlete’s foot problem I had on my right foot,” I quipped. It was a sign that I was rediscovering my personality and doing what I always did: try to make light of whatever it was that was stressing me. It meant I was emerging from the fog of self-pity and beginning to deal with what had happened. Self-pity, whose definition is “a self-indulgent dwelling on one’s own sorrows or misfortunes,” is a dangerous slippery slope emotion.

Stephen Hawking, the world famous physicist and bestselling author who, at age twenty, was diagnosed with Amyotrophic Lateral Sclerosis (“Lou Gehrig’s Disease”), has spent almost fifty years in a wheelchair. He spoke frequently about the attitude that has sustained him. “It is a waste of time to be angry about my disability,” Hawking said in a 2005 interview with The Guardian newspaper. “One has to get on with life, and I haven’t done badly. People won’t have time for you if you are always angry or complaining.”

Hawking and everyone else who has faced a limiting physical condition knows how easy it is to slip into self-pity. We are all prone to it, disabled or not. We must not slide down that slippery slope. We need to listen to people like Hawking, for whom self-pity is anathema.   

When we humans face a person crisis, I believe, we can only go one of two ways: rise up, adapt, fight back, and overcome or descend into the doom and gloom of self-pity. There is no middle ground.

In Lucky Man: A Memoir, Michael J. Fox writes about his reaction to his Parkinson’s diagnosis: “Nobody would ever choose to have this visited upon them. Still, this unexpected crisis forced a fundamental life decision: adopt a siege mentality—or embark upon a journey.”

A journey is a wonderful way to view life after a diagnosis like Fox’s or mine. At sixteen, however, there was no way I had that level of maturity. It was only years later, many years into adulthood, that I was able to see that my diagnosis was actually the beginning of a journey toward the meaning and purpose of my life. A journey we all have to take, disabled or not. 

Regaining confidence is where our personal fight begins. It’s rare to find a person—able-bodied or disabled, healthy or sick—who has not been knocked down by life at one time or another. Regaining confidence is particularly difficult when we face a debilitating physical challenge, but we need to transcend our human propensity for self-pity if we want to feel fully alive and live up to our potential. 

I’ve always found that my confidence is boosted when I push my body to the limit—skiing, riding my bike, swimming long distances—and deal with the physical pain. Win one victory; go on to the next battle; and win that too. Pretty soon, these little victories start to add up to confidence. At that point, self-pity becomes but a distant memory.

It was depressing to me then, but looking back now, it’s just plain shocking that one and only one high school friend had the guts to visit me in the hospital. Jane Pince was a friend from junior high who went to the high school across town. She visited me several times in the hospital and then at the house before I was able to go back to school. She was the only one to do so. It wasn’t that my old friends just wouldn’t visit me while I was laid up. They also ran for the hills, never to have anything to do with me ever again even once I got back to school. Teenagers are self-focused and afraid of illness in others, but Jane still recognized that when something this devastating happens, the victim needs support and friendship more than ever. When I talk to teenagers now about disability, I make a specific point to challenge them: What would you do if your friend got whacked like that and was in the hospital? I hope that times have changed and the teenagers of today would behave differently than the teenagers of 1973.

I have tried to find the positive side to having friends abandon me during these incredibly challenging times. It made me self-reliant to an extent I never had been before. As Ralph Waldo Emerson wrote in his seminal essay entitled “Self-reliance,” solitude being forced upon me would also build up in me a level of independence and drive that would be the most important weapons in my fight to regain my psychological and emotional equilibrium: 

What I must do is all that concerns me, not what the people think. This rule, equally arduous in actual and in intellectual life, may serve for the whole distinction between greatness and meanness. It is the harder, because you will always find those who think they know what is your duty better than you know it. It is easy in the world to live after the world’s opinion; it is easy in solitude to live after our own; but the great man is he who in the midst of the crowd keeps with perfect sweetness the independence of solitude.

Something that contributed to my being ostracized was the misconception in some people in the early ’70s that you could “catch” cancer. Cancer was a term that was not widely spoken in “polite company,” primarily because it was considered to be a death sentence. So either because some thought cancer was communicable, or because they thought I was a dead man walking, or just because getting sick and becoming disabled was scary and uncomfortable to them, my former high school friends were never friendly to me again.

As it turned out, I spent only five days in the hospital. During that time, I began to develop an attitude that has sustained me through my life. When the doctors said I would need to stay in the hospital for two weeks, I took it as a challenge to beat their estimate. Who says I can’t be ready in one? I asked myself. It was the first of many times I would sound my new rallying cry. 

Glad as I was to leave Grace Hospital behind, the real world felt like a strange and scary place in which I no longer belonged. I had absolutely no idea how I was going to cope as I looked, with tears in my eyes, out the window of our station wagon on the ride home, seeing a world that would be very different, and perhaps difficult, for me now. 

As we pulled into the driveway, there was a brand new shiny green Ford Maverick with a ribbon around it. I immediately knew it had to be for me. What sixteen-year-old boy, even if he had lost his leg only five days before, wouldn’t jump (dare I say hop) for joy at the sight? Tears welled up in my parent’s eyes as they acknowledged my excitement and appreciation. It was the first of many examples of how they intuited just the right amount of help to provide, balanced with an equal amount of challenge, to make me stretch and grow. 

Even the Maverick couldn’t take away the pain, however, once I was back home, off morphine, and relying solely on codeine. The pain was constant, intense, sharp, and throbbing. There was no relief. I couldn’t sleep, watch television, read, or even carry on a conversation.

I tried not to look at the stump when my dad changed my dressings once a day. I did see, however, that there was a giant angry incision across the end of what was left of my leg. It was red, bruised, swollen to twice its normal size, and crisscrossed with stitches. It frightened and appalled me, and I couldn’t accept that it was part of me and would be for the rest of my life.  

Looking down at myself, I was still shocked to see my right leg missing. I hated looking at myself in the mirror; reflected back at me, the difference in my body was extreme. I felt like a freak. 

I would sleep fitfully only for short durations. The pain always seemed worse at night. I would lie in bed, scared, unbearably lonely, abandoned by friends, crushed by the searing waves of pain, acutely aware of my deformed body, cursing my fate, and asking myself over and over, Why me?

Music was a partial escape from the pain and the nightmare of my new body. My method of escapism could have been much more extreme. Believe me, I know how strong the temptation is to use drugs to blunt the pain and anxiety of a life that has been severely traumatized. I was lucky to be able to lose myself instead in “Locomotive Breath” by Jethro Tull, “Riders on the Storm” by The Doors, “Stairway to Heaven” and “Kashmir” by Led Zeppelin, and “In the Court of the Crimson King” by King Crimson. I listened to the albums with those songs over and over. Perhaps surprisingly, when I hear that music today, it evokes powerful feelings of healing and recovery, not the negative associations one might expect. 

Chronic pain is much better understood now than it was then. But even in the early 1970s, it was known that a “cognitive busy signal” could be created in the brain to block or suppress the sensation of pain. Intense focus on a task can create this kind of busy signal. Solitaire, puzzles, models, and building a stereo from a kit kept me focused and created the busy signals I needed to somewhat manage my pain.

Initially, from a desire to please and impress others that came from having a demanding father who challenged and pushed us hard and was hard to please, I pushed and pushed at parents and doctors. They finally relented and let me go back to school after just three weeks at home—five weeks less than the eight they had told me I would have to endure. I wanted to go back to school not only to begin leading a normal life again, but also to smash through the limits being placed on me and to exceed everyone’s expectations. When they said, “You can’t,” I was determined to show them I could. I would beat their predictions and please and impress them if it killed me.

I went back to school on crutches. In those days, they waited six months between amputation and fitting an artificial leg to allow complete muscle atrophy and de-swelling of all the soft tissues in the stump. Today it’s different. A new amputee is immediately fitted with a prosthesis because placing the stump snugly inside a hard plastic socket has been found to help decrease the swelling. This also gives the amputee a head start on the challenge of relearning to walk as well as helping avoid the unwanted waves of social sympathy that constantly wash over the newly disabled. 

Groves High was an E-shaped building with 2,100 students in three grades. The spine of the E was the main hall from which feeder halls branched. Between classes, the main hall was packed with kids at their lockers, talking in groups, and coupling up. It was a loud, busy place; but, not on my first day back. As I came swinging through on my wooden crutches, suddenly it would grow silent as each and every student stopped and turned to take notice, and then it would seem like the parting of the Red Sea as a path down the middle of the sea of students would be created by students jumping to either side of the hallway. 

While I had been in the hospital, there had been a detailed public address announcement about my plight. All 2,100 Groves students—most of whom had no idea who I was—now knew the tragic story of the one-legged guy in their midst. No one talked to me. No one even made eye contact.

I felt their pity and discomfort—it was sickeningly thick in the air—as I focused with all my might on trying not to stumble. Their pity infuriated me. It forced me away from them, away from their healthy, two-legged, mobile, athletic lives. I felt isolated, freakish, and singled out. I was still me, but I felt utterly and completely defined by my missing leg.

The anger I felt at people’s pity and my determination to defy expectations spurred me to become a wiz on crutches. I refused to let people hold doors for me. Instead, I figured out how to smash those school-building horizontal bar door openers with my foot. I would come at a door full speed, and pivot back and balance on my crutches so that my one coiled up leg was almost horizontal with my hips and would fire my foot into the bar. The door would fly open, and I would swing on through. Luckily, no one was ever opening the door from the other side at the same time. But I was not really thinking too much about other people. It was all about me and about counteracting the horrible feelings of pity I felt from all sides. I was angry and scared, and I had a big chip on my shoulder.

My body began to adapt to its new form. My balance improved. Walking on crutches is essentially walking on your arms, and my arms and remaining leg naturally grew stronger.

I could cruise along at a good clip. Stairs slowed me down, so I invented special stair adaptations. Going up, I took stairs two at a time, leading with my foot and following with the crutches. I went down even faster. After taking two steps down, leading with the crutches, I landed on the same step as the crutches with my foot; a little hop and a slide off the edge of that step got me down one extra step, while the crutches moved down two more steps. So it was two steps plus one extra each cycle—a very fast stair descent indeed. Incredible as it may seem, in thirty-eight years of doing this, I have never fallen.

The doctors were probably right: it turned out it was a bit early for me to be back in school. I was anemic from blood loss, tired, and unable to concentrate in class. On top of that, the phantom pain was severe. Fortunately, the school let me come and go as I pleased. My shiny new green Maverick made that easy. What mattered to me was that I was back much earlier than anyone had thought possible. Who said I couldn’t? Just winning that battle alone gave me pride.

A non-practicing Jew and a non-practicing Protestant raised me to be a fully practicing agnostic. They had all of us go to a Unitarian Church just to expand our horizons beyond what we covered in school. I wasn’t sure about a deity so I always tried to cover my bases and would occasionally talk to him and think of him watching me and I worried if my behavior was acceptable (which made me be better and maybe that is the whole point of a God in the first place). But sixteen and in dire straits with no sign of any help from a deity made me fully and consciously self-reliant. And this pushed me along on my way to becoming a full-fledged atheist. I became, like recently deceased author Christopher Hitchens described himself, “half-Christian, half-Jewish, fully non-believing.” 

I had lost a leg during my Christmas vacation, but that winter I began to find ways to fight back from what felt like a complete and crushing defeat. I had no idea what was in front of me, and I often fell back into feelings of self-pity and despair. I was angry much of the time, and I felt utterly and completely on my own. Any inkling I might have had about an all-powerful being on whom I could depend did a one-eighty: I believed nothing outside myself would help me. Instead of this making me sad, worried, or depressed, it energized me. It was up to me, and so it had to be me that figured this all out and, I believed, I was up to it. I began to set goals and work hard at them. 

The first big one focused on skiing. The surgery had been in January 1973, and that March, before I was even healed up, I insisted my parents take me to our little local ski club, called Kandahar. The hill might have had a vertical drop of 120 feet and was served just by a rope tow. It was enough for me to try my hand at this sport I loved more than any other. Outriggers—forearm crutches fitted with a mini ski instead of a crutch tip—still had not been invented, so it was regular sharp pointy poles for this first experiment. The problem with pointed poles is that if you are moving and you put one in the snow you cannot actually lean on it to regain your equilibrium because, if you do, you are passing by it and before you know it the pole is way behind you. That skiing outing from the perspective of the watching parents—who knew very well that the stump was far from being fully healed—looked like turn-fall-get-up-turn-fall-get-up over and over. They were certain this was a disaster and had to be worried about how badly and permanently this was going to crush my spirit, not to mention bruise and damage my healing stump. From my perspective it was a completely different story. Sure it was hard and I sucked at it, but I could see the one thing I needed to see to extract hope from my situation: I was certain if I worked really hard I could get it and even become good at it. I was happy for the first time since the disaster of disability had befallen me.

I was celebrating even the smallest victories. Balancing on one leg. Foot-smashing doors open. Going up and down stairs. Relearning to drive. Taking Lobo for a hike on crutches. My first (sort of) turns on a ski. Each one of those little things felt like a fight to me because I was being constantly tested, knocked down, and pushed up against my limitations. I was in constant pain and struggling to learn how to live with that pain and accept my new body. I was beginning to find a new way to move through the world—the way of the amputee, the disabled, the cancer survivor.

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