The Cantina

Foreword
To the best of my knowledge, there is no valid guidebook, handbook or roadmap for you when you are violently thrown into the new body and life of an amputee. Every case is different in some ways and every one is the same in others. The most ridiculous and horrendous part of the beginning of your dilemma is that you have a whole host of doctors, nurses, prosthetists, and other able-bodied people giving you their insight and advice on your new situation. They’ll tell you how life goes on and all these things that you’ll be able to do with your new artificial limbs and blah blah blah.

It’s like a virgin telling you everything you’ll need to know about sex, or your car mechanic describing the intricate details of performing brain surgery. They have no idea what’s in store for you because they simply haven’t been there.

Don’t tell me how my life is going to be, how I’m feeling or what I can expect until you’ve walked a mile in my shoes, or… shoe to be correct.

This writing is for recent amputees, accidental or otherwise, and those close to them to help them understand what they might be facing in the near and distant future. This is not a mystery or adventure novel so I’m not going to waste yours and my time trying to be colorful and entertaining with the writing style of this article. It is more of a contemporary thought type of work, and I’ll do my best to share my experiences and opinions that I have developed over the last decade or so in an interesting and efficient manner. I’m going to try and only write about the things that I feel are relevant and helpful in some way, so as not to bore anyone with mundane, unrelated circumstances.

I’m forty-two years old at the time of this writing and have lived this life for twelve years now. I volunteer myself as a sort of a councilor to the medical center that patched me up after my accident, where I lost my lower left leg. I talk to recent amputees who are having a rough time dealing with their new situation.

I recently got a call from them and they asked me if I would come in and meet a young lady named Beth who was in a motorcycle accident during bike week in Daytona Florida. I had met several of their patients in the past, and would talk to them and show them my prosthesis. We would talk about what to expect and what not to expect from their new bodies and limbs and government agencies and support groups and things that were soon to be in their everyday lives. None of these folks had affected me so deeply as Beth. The moment I looked in her eyes I was emotionally transported back in time those twelve long years I’d just lived, and it was almost as if it were me lying in that hospital bed again.

While I was there, several nurses and doctors stopped by and were pressuring her to get her to authorize the amputation of her left leg, above the knee. In fact, while I was out in the hall, one of them even pulled me aside and asked me if I knew why she was “procrastinating” on making the decision. She had been working there sixteen years and it was clear to me that during those sixteen years, she had become so desensitized to the patient’s feelings, that she honestly had no idea that this was likely the most important, terrifying, horrible decision that Beth would ever have to make in her life, past, present, or future. You see, Beth still had her leg, but the prognosis was grim on the expectation of her being able to keep it and having it be useful. So it was up to Beth to make the call to either try to save her leg and undergo numerous surgeries and years of painful rehabilitation, or amputate it, and when to do so.

When I met Beth in that position and looked in her eyes, all of those horrible memories of the fights I fought, the unknown fears, the unanswered questions and finally the glorious triumphs from my own experience rushed back into the fore front of my memory, and that is why I’m writing this. I’m hoping that my insight and experience can help take the sting and uncertainty out of someone else’s nightmare. Beth, this is dedicated to you. While it will contain many harsh realities and uncomfortable truths, I hope it will help you and others in our position.

The Edge

I was in a motorcycle wreck in August of 1992 where I lost my left leg below the knee.  The details of the accident are of no use to this book so I’ll just be general. I was going about 3 or 4 miles an hour and just starting a left turn when I was rear ended by another motorcycle going about 50 mph. His bike impacted my left shock absorber and raked up the left side of my bike, breaking everything on the left side of my bike including my passenger’s leg, and amputating mine. My leg was between the two bikes and since my bike was relatively still and his was going fifty, my leg was twisted seven full revolutions and the only thing connecting it to my body in the aftermath was a small patch of skin. My knee cap was removed and the the four or five inches of fibula and tibia that were still attached to me were degloved, which means there was no muscle or skin covering them. I lost quite a bit of blood at the scene, and in the helicopter I had an amazing near death experience that I call the edge, and shortly after this happened and it was still very fresh in my mind, I wrote a few paragraphs about it.
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I’ve seen the edge. It’s powerful and weak, fierce and meek, highly emotional, and surprisingly apathetic. It seemed to be everything I know, all painted into one big picture, but the only color was white. The best way I can describe it is that it was like I was part of a vast ocean of warm milk. I was not a single drop in that ocean. There was no individuality. I was simply assimilated into that vast warm white ocean, and the ocean and I had become one. There were no senses as I know them. No sight, sound, smell, taste, or touch. All there was was a kind of consciousness, or state of being. All of my knowledge, and experiences were surrounding me at once. Every emotion I’d ever felt, in its highest intensity, was flooding my space. The only exception was hate. There was no hate. In fact, there was nothing foul or unpleasant about the entire experience. It was truly the most peaceful feeling I’ve ever felt, and although everything that I’ve ever known or felt in my entire existence was readily available and in plain view, nothing was cluttered or confused. It was not life or thought, as we know it. It was the edge.

I have not lived my life like a saint. In fact, my past is scarred and tattooed with many nefarious endeavors of which I am remorsefully ashamed of, and wish I could erase, but am helpless to do so. I wish I could find comfort in knowing that other people have done worse, but the blinding truth of the matter is that I cannot, and should not compare my own deviations with others, but measure them within myself, and I do. I don’t know for sure if what I experienced was a preview to death or eternity, but if it was, the lord truly does forgive, and a better existence awaits us all.
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I don’t remember a whole lot of the remainder of the accident scene but I’m told that there was a registered nurse who was one of the first people on the scene, and that she tied a tourniquet on my thigh and saved my life. The EMTs on site told me that I was very vocal while they untwisted my leg and laid it in an inflatable splint. Thank God for shock because I don’t remember any of that, and have no desire to.

I do remember them loading me into the helicopter to transport me to the hospital and I remember slipping into the “edge” several times. One of the helicopter personnel kept tapping my cheek and yelling my name to bring me back out of the edge, and I remember resenting her for that. I kept wanting to go back to that peaceful place and she was dragging me back out into that world of hurt. To this day the sound of a helicopter wells my eyes up with tears.

Waking up in the hospital

I really don’t remember much about the emergency room. I remember a cop standing over me and talking to me, but I have no idea if I was answering questions or what he was talking about. I have another memory of waking up on a table and people were working on me but I was paralyzed. My eyes were open but I couldn’t speak or move anything. They noticed that I was awake and quickly put me back out. I also remember waking up in critical care and I was on a respirator. That was awful. I was awake and wanted to gasp for air but that little machine would only let me breathe at it’s pace, and it felt like I was suffocating. Those are the only memories that I have from the time I reached the hospital Sunday afternoon until Wednesday when I woke up in a private room in my new body.

My Mom was sitting in the chair beside my bed. She was glad to see me awake but the look on her face told me immediately that things were not good. I looked at my hands and arms. I had about ten stitches in my left elbow and a few more on the same hand near the knuckles. For some reason I pretty much new that my leg was gone but I wasn’t really certain. I picked up the covers and looked underneath them.

I’ve always been a pretty strong person in the sense that I take the cards that are dealt me and I play them to the best of my ability. I seem to accept whatever happens in stride and try to find some humor in any given situation, and that is what helps me get through tough times. I knew I was going to have to be strong for my Mom because of the anguish and despair that I saw on her face, so I put the covers back down and looked up.

“Well, thank God my dick is still there!”

After some nervous laughter, Mom started crying and I told her not to worry. Everything was going to be all right. I don’t have any children but I think that the mental trauma that comes with an event like this must be far worse for parents to see their children in that condition than it is for the victims themselves.

I had never been in a serious accident, nor had I really known anyone who was at that time. I had no idea what was in store for me, but the next few weeks would prove to be the most difficult time in my life.

I had an epidural, which is basically a nerve block installed in the spine to prevent the pain sensations from reaching the brain, so that first day, I was virtually pain free. It wasn’t long till my room was filled with friends and family. There were balloons and flowers and cards and letters and a steady parade of people in and out of my room. Almost all of them had the look on their face like a car just hit their puppy, and that got real old real fast. My knee and my stump were all wrapped up in gauze and it looked like the shape of a dog’s head, so I cut little circles out of dark paper and taped them onto my stump as eyes and a nose and when I’d see the shadow of someone coming, I’d get a lung full of helium and hold my new puppet up in the air and start barking. It was a good icebreaker and usually worked in warding off the sympathy part of the visits, but it wasn’t long till the nurses ordered a visit from social services to see if I needed a psych evaluation.

Soon, I’m being wheeled all over the hospital. Up to one floor for physical therapy, off to another floor for brace fitting, over to another wing for a stump shrinker fitting and all kinds of other stuff that I never knew existed. One thing was certain. Soon, I was going to smoke a cigarette or someone was going to die. During one of these trips to another department, my visit was over and I was just sitting there in a wheel chair waiting for a nurse’s aide to come and push me back to my room. I decided that this was my chance, so I wheeled myself back to my room and borrowed some smokes and a lighter and wheeled myself down to the elevator. I made it all the way outside and finally satisfied the craving that I’d had for so many days. I wheeled myself back up to my room and folded the wheelchair up and hid it under my bed. Now I had wheels.

Reality sets in…and it’s a good thing

It’s pretty easy to get caught up in feeling sorry for yourself when something devastating like this happens to you. You have a lot of time to lie around and speculate on life, God, and your unknown future. Why did this happen to me? What did I do to deserve this? Why did I survive it? What will I do for a living? Will I ever get a date looking like this? How am I ever going to pay these bills? The answerless questions just keep coming and coming. You push them out while you have company so you can appear strong, but when you’re alone, there’s no closing them out and they are emotionally devastating, but completely normal. You are now in the world of the unknown and that can be awfully frightening when you are feeling injured and vulnerable.

During one of my smoking trips I had a really sad experience that wound up being sort of a silver lining in my black cloud. It was awful in a way and extremely helpful in another.

It was a beautiful August day. It was warm and the sun was shining. I had time in between doctor visits so I pulled out my boosted wheelchair and headed outside. While I was sitting there smoking and swimming in all these unanswered questions, I saw the doors open and a few people wheeled out a gurney with a young man on board. Their mood was extremely somber and permanent. The young man’s mother lit a cigarette and would hold it for him while he would take a drag. They were talking but it was all serious conversation. Nothing light hearted or jovial over there. There was just sobering reality. I would later find out that this young man was five years younger than me and at the time I was thirty and feeling young. He was a linesman for the power company and fallen from a pole. The prognosis was that he would be a quadriplegic for the rest of his life, and at that moment I realized that in the grand scheme of things, my situation wasn’t so bad. I cried for him as I thought about what he must be going through and what he would go through for the rest of his life and I never again had the audacity to ask myself “why me?”

A few days later I got a visit from a man I never met. He was a tall, biker type guy with a pleasant, permanent smile and medium length sandy blond hair, and he introduced himself as Snake.

Then he looked at my mom and said, “Well, my name is Albert, but no self-respecting biker calls himself Albert.” He smiled and said he said he was there to welcome me to the club.

“What club is that?” I asked.

He reached down and knocked on the side of his knee and it sounded like he was knocking on a pine board.

“The one legged biker club, you’re our newest member.”

It turns out that he was friends with many of my friends, but for some reason, our paths had never crossed until then. They’d called him and asked him to come and see me and answer some of my unanswered questions. I guess I wasn’t hiding those feelings as well as I thought I was. He was a below knee amputee just like me but I would have never guessed it the way he walked right into my room, grabbed a chair and dragged it off to the side and sat down.

Meeting Snake was the best thing that happened to me since the accident. He took his prosthesis off and showed it to me. He showed me how it was made, how it stayed on his body, how to put it on and take it off and described the differences of the use and functionality between the artificial leg against the old flesh and blood leg.

It had been twenty years since he lost his leg. He had great insight and experience where I had none and he shared it with me freely. Most of what he showed me though, was that my life would go on with some type of normalcy, and that I wasn’t alone in this predicament. Yep, meeting Snake was the best thing that happened to me since the accident, hands down.

A few days later a young lady from the prosthetics department showed up in my room carrying an artificial leg and some of the accessories that go along with it and gave me a presentation on prosthetics. It paled in comparison to the one I got from Snake. This girl knew how to build them and adjust them and such, but she had no idea how to actually walk on one or how to live with it. She was a nice girl and was really trying to do her job, but she really didn’t have much to offer after my visit from Snake. She was just another hospital employee with limited knowledge and no “real” experience on the subject of being an amputee.

The staff’s excellence and ignorance

The epidural did a wonderful job of blocking the pain that first day, but I was about to be introduced to Mr. Pain in a serious way. It was removed the next day and I was put on a time release morphine pump, which means, the morphine is there in the IV container, but there is a machine attached to it that will only let you dispense a dose every couple of hours. I knew that and I remembered a story I’d heard about a famous country singer that was in the hospital once with a painful injury and he put duct tape on the button as a joke to his friends. The pain was intense but it was manageable with that pump. As my friends were visiting and concerned about the condition I was in, I assured them that I was okay and that the anti-pain juice was only a button away and I’d hit the morphine button a few times, knowing full well that it wasn’t dispensing any. I was about to find out something truly outrages.

The medical staff is trained to visually assess and stereotype incoming patients as to whether or not they think the patient is a drug user. Little did I know that they indeed observed my long hair and tattoos and put me in that category, which wasn’t true, but now they had “supporting information” from all these dosage “attempts” that the machine counted, and they quickly removed me from the pump. So the timeline goes like this. I woke up Wednesday with the epidural. They removed it Thursday and installed the morphine pump. Friday at about 5 PM, they removed the morphine pump and gave me two Tylenol 3 tablets. That Friday would soon turn out to be the worst day of my life.

I never knew pain could be so intense. I never knew that pain could make you hallucinate. I rang the nurse bell but they wouldn’t give me anything. They said that my doctor had gone home for the day and that he was the only one who could prescribe me medication. The pain got worse. I kept pushing the nurse button and soon they started ignoring it. By now, I was in complete and total agony. My vision was failing me and everything turned white. I could hear voices in the hallway but instead of my brain processing it as sound, it was like a big whiteboard with huge black letters thumping away at my soul. My stump felt like it was in a tight vise and someone was continually bashing it with a sledgehammer. It seemed to last forever. All I could do at that point was scream and moan, and I did, and I did it loud. After a few verbal attempts from the nurse to shut me up, finally about 9 PM, she had the emergency room doctor authorize pain medication for me and they gave me a shot of Demerol, which not only managed the pain, but put me to sleep as well. The next day I was on regular doses of synthetic morphine in pill form, and while I was still in excessive pain, it was at least manageable.

Since then I thought a lot about how terrible it must have been in the early days of medicine when doctors performed surgery with little more than a cross cut saw and a leather strap for the patient to bite on. With today’s technology and the ability to suppress such agonizing pain, I can’t for the life of me understand what good purpose it serves by putting anyone, drug user or not, in that awful state, but it’s done everyday in hospitals across America.

At first, I had no idea who was who from the hospital staff. People would stop in and unwrap my bandages once or twice a day and re-apply them. They’d write something on a clipboard and off they’d go. Sometimes there was a whole team of them that would stop in and look at my stump. Sometimes, it was just one person. Sometimes it was doctors, sometimes it was nurses, and sometimes it was the dreaded interns. I don’t know at what point in medical school they start calling themselves doctors, but I can assure you that it is well before they are qualified to be addressed or titled with such respect. Basically, unless you ask, you don’t know if the person stopping in to administer your post operative care is an experienced doctor with genuine bedside experience or a rookie college student that spends his weekends getting trashed at local raves. I was in a university hospital so I think there were more students and interns there than you would find in most hospitals.

Here’s something disturbing that I put some thought into during this whole ordeal. Doctors are simply people too. They all don’t graduate at the top of their class and instantly achieve greatness. Some will, but then again, some won’t. Some will have graduated at the bottom of their class, but will still work as doctors. Some may be forgetful, insensitive, uncaring, greedy, self-serving, unqualified or incompetent. Some may have drinking problems, drug habits, gambling addictions, mental illnesses or any number of other normal human conditions that may affect their judgment or performance in their profession. So just because the man who is stretching on the rubber gloves and telling you to bend over is wearing a nametag with the title “Doctor” on it, doesn’t mean that your going to get the professional and competent treatment that you deserve. You have every right to know your doctor’s and facility’s history, accreditations, experience, specialties, suspensions, exclusions and a whole host of other important information.

Ask for information on patient’s rights at the information or administration desk at your medical facility.

There was one young guy there that I developed a genuine hatred for. He was a foreign exchange student from Germany that was an intern, with absolutely no compassion or bedside manner whatsoever. In order for you to understand my feelings for him, and how they came to be that way, I have to describe the condition of my stump for you.

From what I understand, the doctors saved my knee with experimental surgery. Since my leg was degloved from the knee down, and the kneecap was removed, they had to patch bruised muscle from what was left of my lower extremity onto the stripped bones for padding, or filler, for lack of a better term. They then grafted skin onto it from the removed part of my lower leg, and harvested another patch of skin from my thigh to complete the skin coverage. This whole process left me with hundreds of metal staples holding all of these skin grafts in place. It was really bad looking and extremely painful but they put a lot of effort into saving my knee, and for that I am eternally grateful.

Anyway, this intern used to come in and loosen the end of the fifteen feet of gauze that was wrapped around my stump and swirl it round and round in a rapid fashion, like he was wheeling toilet paper from a roll. He didn’t care that the wound had seeped into the gauze and pasted the layers together and he didn’t care that strands from the gauze would catch in the staples and pull as he was unwinding my bandage, both of which were extremely painful. Even though I expressed my pain and discomfort to him about his technique, nothing changed and everyday, that is what I had to look forward to. When it came time to start removing the staples, twenty or thirty per day, he used the same non-caring production line techniques. One day I finally told him to get out of my room and never come back. I told him that if he came within reach that I would punch him in the eye. I told all of the staff that I never wanted him in my room again and it worked. I’d still see him around from time to time but he never came near me again. I had their schedule pretty well memorized by now so about fifteen minutes before I expected them, I’d carefully unwrap it myself. They weren’t real wild about this, but they let me get away with it.

The orthopedic reconstructive surgeon and the reconstructive plastic surgeon were the two best doctors in my case. They were the team that ultimately saved my knee, but the orthopedic doctor was also the one that was denying me pain medication. So he was brilliant in the sense of looking forward, and going the extra mile to help a patient achieve the best possible long-term outcome on the operating table, but was a complete failure in postoperative care in my opinion.

Important post-op information

There are several things you should be aware of shortly after your amputation that are going to be very important in your physical recovery. If you are a below knee or below elbow or wrist amputee, it’s likely that you will be fitted with a removable cast that is designed to keep your residual limb straight. The reason for this is so that the tendons don’t contract and shrink, which would for a below knee amputee, or BKA as they call it, leave the knee in a bent position. If they contract and get used to being that way, you’ll have much more difficulty down the road when being fitted and ultimately using a prosthesis. So wear that cast tightly and wear it often. It gets uncomfortable after continued use, but it’s going to be well worth it later on.

Another thing you’ll probably be fitted with is a stump shrinker. This is usually a custom made application that is designed to keep the stump from swelling, or to speed the process to shrink the stump to what will ultimately be it’s permanent size. Mine was made from a heavy duty material like women’s nylons, but much heavier. You’ll want to follow your doctors orders on how much to wear these pieces because the faster you heal and get that stump stable, the faster you can get a prosthesis and get on with your life.

You are going to want to keep your wound clean. Change your dressing often and stay on any anti-biotic or infection fighting meds that your doctor puts you on. Infections and dirty wounds run the risk of taking longer to heal or even another amputation higher on the limb. Keep it clean.

Physical therapy is going to start right away. You’ll be given exercises to do with your residual limb. You are going to experience a certain amount of atrophy in that limb anyway, but the more strength and muscle tone that you can keep, the better off you’ll be when you are fitted with a prosthesis and the easier it will be use your prosthesis when you finally get it.

Occupational therapy starts right away too. Basically, they show you how to use a wheelchair, or crutches and other tools for helping you get along once you leave the hospital and go home. You’ll do exercises like getting close to kitchen cabinets and retrieving things from them, how to use any aids you may need to use the toilet or shower chair, and how to get yourself on and off of them. You’ll become pretty resourceful once you actually get home and start moving around. You’ll find valuable uses for things like fanny packs and travel mugs with the lids, because simple things such as carrying cup of coffee or some granola bars from one room to another can be a real challenge.

Going Home

Hospital stays used to be much longer than they are today. Anymore, they don’t want you there any longer than you want to be there. There has also been an explosion in home health care where a nurse, nurse’s aide or physical therapist can visit your home, do what they have to do and report back to your doctor much cheaper than if you are occupying hospital space.

I couldn’t wait to get home. While I was in the hospital, my mom took the liberty of giving my house a real good once over and bought me a nice comfortable couch. I spent a lot of time on that couch in the coming months. She also had small ramps installed by some family and friends so I could wheel around to the kitchen and bathroom fairly easily. They let me take that wheel chair home and charged a weekly rental fee to my bill. The hospital should be able to provide you with temporary mobility solutions and crutches to help you get around. A good office chair with wheels can work pretty well too for some things.

To sit on that couch and watch my own TV, read my own books, pet my dog, and just see my familiar views from the safety and comfort of my own home was a god-send. I could smoke when I wanted. I could get a sandwich even if it wasn’t lunchtime. I could have a bowl of cereal at nighttime and I could crank my stereo. This was much better than being in the hospital, mostly because now there was a glint of hope that my life would continue somewhere outside of their walls and back inside mine. I was back, a little worse for the wear, but I was back.

Before the accident, I had a pretty footloose and fancy-free lifestyle. For day jobs, I’d run heavy equipment, landscape, or work as a welder. At night I’d play music. I had a pretty good band together back then. We were very well known in the area and used to get all the good gigs playing and opening for people like Bo Diddley, Jonny Winter, Marshall Tucker and other national acts. I had a solo gig booked to open for Joan Osborne and I was bound and determined to play that gig. The show must go on and all that. I was so determined to get on with my life, that I hooked up with a friend of mine and did that gig as a duo from a wheelchair with pain in my heart, blood and plasma oozing from my stump, and morphine in my veins. My mom was hell bent against it but I had to do this for me. I had to prove to myself that I was still the same person I used to be and that I could still be somebody.

I got to meet Joan and her band afterwards in the dressing room and they all autographed a t-shirt for me. They made comments on how they were impressed at my dedication towards music but that was really only part of it. Most of why I did that gig was just to prove to myself that my life could and would go on to some acceptable standard. It was a huge step towards my mental recovery.

I didn’t have nearly the volume of visitors once I got home. It pretty much dwindled down to the home health care people, my family and my closest friends. My mom dropped her life and stayed with me 24/7. That was a good thing. She waited on me hand and foot and helped keep me from having too much self-absorption time. It’s important to be doing something or to be talking to someone. Having too much time on my hands would have been a bad thing at this point in time.

One day my friend Gary picked me up to go see a lawyer about the accident and how to proceed on the legal aspect of it. Gary was a lawyer too, but he is a criminal lawyer, so he drove me down to introduce me to the attorney that would handle my case. I got on my crutches and made my way to his car and we were driving into the city. It’s a three lane, one way, 35 mph street, and Gary was going about 70, and weaving in and out of traffic. I was white knuckled in the passenger seat and Gary couldn’t figure out what was wrong with me. I finally looked at him and said.

“Gary, come on man, I just lost one leg in a traffic accident. Do you think you could slow it down a few notches so I can keep the other?”

Some folks don’t understand how delicate your psyche is at this point in the game. Don’t be afraid to tell them. For me, I seemed to be adjusting to my injury better than most but there were a few things that would really hit home with me, like fast or unsafe driving, the sound of a helicopter and not knowing what was in store for me in the future.

The pain continues and the nightmares begin

The plastic surgeon I had was by far the best person on the medical staff that I had to deal with. He was gentle when treating me, and sensitive to my situation. He understood much better than the rest, the severity of my injury and the time it would take to heal, but he would be the one to instill the most fear in me that I ever experienced.

As weeks went by the pain did not subside. It was a monster. Weeks and then months rolled by and I was still in a great deal of pain. My stump was still severely bruised and it still had open sores on it where the skin grafts had either failed or were still healing.

I was still pulling staples. The home nurse would come by a few times a week and determine which ones were ready to be removed. By now, some of them were growing pretty deep into the skin and she’d have to dig for them. I finally sweet-talked her into giving me a staple remover and she’d point out the ones that needed removing and would let me do it myself. It still hurt but it was better that way.

I’d say it was about halfway through October that the doctor told me that he was getting worried about me getting addicted to the pain medication, and that if I was still in that much pain that maybe the answer was to perform a amputation on me above the knee, in an area where there was no trauma, and he’d always wave his hand in a cutting motion just above my knee.

Every time he did that, I’d get a terrific rush of fear and tell him that that was not an option. I’d lost as much of my leg as I was going to and that was that. It all came to a head one day when, at an appointment, I told him I was almost out of pain pills and he refused to refill my prescription. He told me that this was the day when I’d either have to deal with the pain or make the decision to go above the knee, and he made that little cutting motion above my stump. I sat there in tears, trembling in fear. I’d never been so scared in all my life. In my mind, at the time, it was either, once again go through every thing that I’d already gone through for the last two and a half months, mentally and physically, or a take a one-way trip to the pain cave and fight it out. I started to learn a little more about prosthetics in the past few months and I knew that most of the time, the more working joints you got to keep on your stump, that by and large the better off you’d be in the end, and chose to keep what I had and take the awful trip into the cave.

The decision I made was the right one for me, but may not be the right one for everyone. I’ve since talked with people who took the extra time and pain trying to save a limb or part of a limb and then years later, succumbed to the constant pain and medical procedures and finally gave the way for amputation, and then wished they wouldn’t have wasted those years trying. Every situation is different. I’d recommend that you get the best advice you can get from second opinion doctors in another facility and advice from as many people you can think of that might have fought a similar fight.

I started having nightmares a few weeks after the accident. I’d had nightmares before like everyone else, but never to this extreme and with such frequency. All of them would have a common theme, and that theme would be the loss of a limb or limbs. They were all also very short and fierce. I would have them every time I reached REM sleep, and for a few weeks, or maybe a month or so, I was down to sleeping about an hour a night.

It started with the bear. I’d dream that it was springtime and I was near a rustic cabin in the woods, and of course, I was in my new one-legged body in this dream. I’d always be just out of the reach of safety, whether it be the cabin, or a nearby vehicle, but ultimately, every time, this bear would materialize out of nowhere and start chasing me. I’d try with every ounce of strength and adrenalin I could muster to try to crutch my way to safety, but that bear would get me every time. As soon as he would make his final ferocious approach in the attack, I’d wake suddenly in a cold sweat, out of breath and in sheer terror.

The next set of nightmares would be even worse for me. While the characters would change, the result was always the same. I’d dream of any one or anything that I truly and deeply loved, whether it was my mother, father, grandmother, my late grandfather, my trusty and loyal Siberian husky, or my best friends. In this dream, one of them would be bloody and battered and obviously in enormous pain. Their limbs had been torn from their bodies somehow and they would be crawling towards me, sobbing painfully and vulnerably, leaving a trail of blood, muscle and tears. I’d wake up in shaking, in tears, too fearful to go back to sleep to face them again.

Between the pain and lack of pain medicine, nightmares and lack of sleep, I was really starting to go downhill. I had absolutely no appetite, and even though my mom would prepare meals for me and beg me to eat, I just couldn’t do it. I’d gone from 175 pounds to 125 pounds from August till October and I needed serious help. A friend of mine told me about something called a pain clinic at a different hospital so I looked them up and made an appointment.

The doctor at the pain clinic examined me and listened intently as I explained to her what I had gone through for the past two months and what I was going through now. She made calls to the medical center where I had been treated and upon her return to the examination room, seemed agitated and angry. Pain management and pain relief was her specialty and she was obviously distraught over how she felt that part of my treatment was handled.

She taught me that pain should be treated before the pain becomes excruciating, or if the pain starts at such a severe level, that it must be managed to a level of acceptable tolerance, and continued from there. Appropriate pain management helps the patient avoid periods of excruciating pain as much as possible and establishes a treatment plan for such episodes of acute pain if and when they occur.

According to the board of Registered Nursing, there is a difference between tolerance and physical dependence (normal physiological response to opioids given for relief of pain) and addiction (active drug-seeking behavior for the purpose of an altered level of consciousness).
Pseudoaddiction is the appearance of drug-seeking behavior among pain patients who, because of inadequate pain management treatment, end up acting like “addicts” by exhibiting drug-seeking behavior. These patients actually are being forced into such behavior due to denial of care or inadequate management of their pain problem.

I’m sure that the hospital had me classified as an addict, and that the doctor at the pain clinic correctly diagnosed me as a Pseudoaddict. She put me back on opioid pain pills, and prescribed Amitriptyline, which is an antidepressant, to help me sleep.

I was happy that my pain was being treated again, and even happier at the prospect of getting some sleep, without the nightmares. I was supposed to take one of the sleeping pills before bedtime, which I did for the first two nights, but they had no effect. There was no noticeable change in the amount of sleep or the severity of the nightmares, so I called her on the phone and she said, “Tonight, take two.”

I took two sleeping pills that night and zonked for about twelve hours, nightmare free. It was the first peaceful night of sleep that I’d had in quite some time, but it would take me about an hour in the morning to clear the cobwebs. It didn’t like the way the sleeping pills made feel drugged and disoriented in the morning but was a small price to pay for peaceful slumber and ending the torment of those vicious night visions. Eventually, as the pain subsided, so did the nightmares and by December or January, I was completely drug free. I still had a bit of pain, but it was nothing I couldn’t manage with over the counter Tylenol or aspirin.

Accepting your new body and living with it

I had a little trouble at first with looking at my stump. It seemed so unnatural. It was ugly and sore. It was deformed and disfigured and it looked like a ham that someone had dragged behind a car for several miles of bad road. But it was mine and I had to live with it. It was like “the face that only a mother could love”.

As time wore on, I got used to looking at it but was still very self-conscience of it. I didn’t seem to mind so much as long as it was wrapped up or covered, or if it was medical personnel looking at it, but I’d never leave it naked or exposed in company. I’d seen the people before that would leave the legs on their pants and just pin up the leg that was missing, and I hated that. I picked a couple pair of pants, jeans and jammy pants (or sweat pants), and cut the left leg off about three inches below my stump. I thought I’d wear these pants, or wear shorts until I got my prosthesis and then I’d go back to dressing like I always had. I found out as time went on that it was real handy to keep these pants and wear them around the house because it’s easy to put my prosthesis on and off with those pants. When I’m are hanging around the house, it’s much more comfortable not wearing my prosthesis, but when I want to go to the bathroom, or go to the kitchen to get something to drink, I have to put it on to walk, so I wind up putting it on and taking it off several times during the course of an evening.

The death smile

I think I know what lies in the mind of some senior citizens when they are lying on their deathbed and they are happy to be there. You see a certain calm in their eyes and a hint of a crooked smile on their faces. Often times the family members and loved ones take the upcoming death event much worse that the subject themselves and I think it’s because, to many, it is a relief to die. They are about to leave their ongoing painful struggle. Whether or not they’ve won or lost is really not an issue. What is important is that it is soon to be over. The pain will disappear. All the things that once were easy and now are unbearably difficult will soon be easy again. They can leave this worn and tattered body and transform into the next existence and even though the next step is unknown, they optimistically think or hope that it has to be better that this.

After twelve years of living as an amputee, and the arthritis and obstacles that naturally occur with the process of living in a wrecked body, I feel just like that from time to time. Especially in the morning when the arthritis is raging and it takes thirty minutes of shear agony just to make it twenty feet to the bathroom to piss. I think I truly understand the death smile.