Pubdate: Thu, 13 Nov 2003 Source: Nashville Scene (TN) Copyright: 2003 Nashville Scene. Page: Cover Story Contact: http://www.nashscene.com/ Details: http://www.mapinc.org/media/2409 Author: Gil Templeton Note: This article is drawn from the author's forthcoming book, The Pain Chronicles, which is to be published by Cold Tree Press and is available at www.coldtreepress.com Bookmark: http://www.mapinc.org/find?232 (Chronic Pain) THE PAIN CHRONICLES ONE MAN'S LIFE-CHANGING, BODY-ACHING, DRUG-ADDICTIVE STRUGGLES WITH A DEVASTATING INJURY What I am is a person in pain. Chronic pain. An ordinary guy who just hurts like heck. All the frigging time. Day in, day out, 24-7, 365 days a year. There's nothing funny about the predicament of chronic pain. It is truly an Equal Opportunity Affecter. It doesn't care how old you are, what color you are, what gender, what creed. It doesn't wait for convenient times or logical circumstances. It creeps in like a thief in the night and day, robs you of comfort, agility, dignity and energy. It hardly ever, ever takes a break. It is real. It is serious. And it hurts. I am a 45ish-year-old Caucasian male, about 6-foot-1, 185 pounds. In another life that seems so long ago, I was a fairly decent tennis player. I could run a six-minute mile. I enjoyed golfing with friends about three times a month. I could be up and out of the house with a quick shower in less than 15 minutes. I played drums for almost 25 years in various rock 'n' roll bands from Nashville to Chapel Hill. I could ride an exercise bike for 45 minutes. Not anymore. In my present and most probably permanent state, it takes me somewhere around three minutes just to get out of bed. My morning ritual involves waking up with what feels like a rusty dagger stuck in my cervical spinal cord. I then roll over on my side, letting my legs swing off the bed until they touch the floor. I use my stiff right arm to push my trunk up into a sitting position. I do a series of stiff head rolls to try and loosen up my shoulders and neck, my face contorting and wincing. I make Linda Blair look like a rookie. Having performed these movements and resigning myself once again to another day of chronic shoulder/neck/limb pain, I lie back down on my back and attempt right and left leg lifts. Then I pull them up toward my chest. The legs don't go very far, but the movement shakes up the muscles and the nerves a bit. I cannot do anything about the constant tingling numbness of my left and right arms, from my shoulders all the way through the tips of my fingers. The worst is my left arm. And, hey, wouldn't you just know it, I'm left-handed. The next morning step in my therapy involves the shower. I turn the water valve to a temperature as hot as I can bear it, placing my neck and shoulders under the stream. After five minutes or so, I reach down and, all at once, turn the water valve to where it is as cold as it can get. I shriek. I stand there screaming for as long as I can stand it--my record so far is about 40 seconds. I'm sure everyone in my condominium complex is convinced that every morning the shower scene from Psycho is being re-enacted. (Did you know that "hydrotherapy," or using hot, then cold, water as a device for relieving chronic pain and muscular problems, has been around since the mid-19th century?) So how did all this come about? How did I become another statistic among the number of chronic pain sufferers throughout the country? The truth is really unremarkable. I wish I could say that all this was the result of my performing some heroic deed. Like saving a busload of nuns from a biker gang, or lifting a ski boat off of an infant in front of thousands of witnesses. But my injury is the result of a head full of shampoo and a cough. I was in the shower one February morning in 1996, and I had my head all lathered up with shampoo. When I threw my head back after rinsing, I felt a small prick-like sensation in my neck, just to the left of the top of my spinal cord, at the base of my skull. I didn't really think much of it. As a tennis player, I had a history of minor back spasms and some stiffness, so I simply tossed it off as lingering from the previous day's exercise. I stepped out of the shower and felt a tickle in my throat. That subsequent simple, stupid cough changed my life forever. When I coughed, a stabbing, burning pain in my neck literally made me drop to my knees. I felt dizzy as my brain tried to register the force of it. I quickly got out of the shower so I wouldn't collapse onto the cold wet tile. I felt sort of off balance, and, when I coughed again, I thought I was going to lose consciousness. Immediately, my left arm and shoulder tingled with numbness all the way down to my fingertips. I was scared to move. I was scared to breathe. I was convinced I was having some kind of stroke. My left arm twitched involuntarily. I thought it had settled down some and, rising off the bathroom floor, I actually thought I could make it to work. By the time I got to the interstate, about three miles from my home, I was screaming in pain at the top of my lungs. After pulling into the office parking lot, I walked in, doubled over, and went straight to my office and slammed the door. Needless to say, several fellow workers rushed in to see what was the matter. They saw me slumped over my desk, rocking back and forth. My partner, Rick, asked what the hell was wrong, and I tried to speak in gasping syllables as I reached for the phone book. I screamed that I needed an ambulance. Rick dialed 911. Within minutes, a paramedic was shooting morphine in my neck, and in a few seconds the pain had vanished. In the emergency room, a neurosurgeon was called and immediately ordered an MRI and a myelogram. They kept me doped on the morphine so I could get through the procedures. Over the course of the next few days, I learned that of the seven cervical discs in my neck, three had exploded, sending bone fragments--or bone spurs--into my spinal cord and making it ripe with "foraminal stenosis." What this meant was that the cord had closed around a bunch of nerves, crushing some beyond repair, which caused all the pain and numbness. I was given an epidural block, a procedure that required doctors to shoot a numbing, Novocain-like "block" into my neck that would hold me until the major surgery portion of my program. The interesting thing was that my two doctors--the neurosurgeon (nerves) and the orthopedic surgeon (bone)--considered my condition congenital, meaning that I had suffered this plight in an unrealized form since birth. No trauma had made this occur. It just finally happened from years of left-handed, right-brained abuse to that part of my system...playing drums, tennis, bad golf and, of course, a weird alien abduction incident. But I digress. Early one morning in mid-February, the doctors prepared to filet open the back of my neck in what was being routinely referred to as a "radical procedure." While one doctor reamed out my spinal cord to relieve the nerves, the other would use a bone graft from my left hip to fill in the cracks left by my discs that had gone bye-bye. Theoretically, the bone graft would form a "bridge" from unexploded cervical disc to unexploded cervical disc. I was in surgery for over five-and-a-half hours. The first two things I noticed when I woke up in recovery were a sharp pain in my left hip and a throbbing headache. It didn't take long to explain both. There was a scar about 4 inches long in my hip where a chunk of bone had been whacked off to put in my neck. Also, I was wearing what they casually call a "halo." Folks, words don't do justice to the name of this device. It is a metal cage attached to your head by four heavy metal screws driven into your skull--two in your forehead, two in the back. The cage itself sits about a foot over your head, and it is harnessed by a large plastic shawl--like a shoulder pad with thick cotton fleece, as a cushion between the cage and your bare shoulders. The thing weighs somewhere in the neighborhood of 15 pounds. The purpose is obvious. You are completely unable to move your head or neck in any sort of swivel whatsoever so the spine and graft will have time to attach and heal. Besides freaking out big-time with the claustrophobic effect of the halo, I was totally unprepared for what came next. I assumed that this type of treatment was only for the first few days, maybe a week, to let everything get on a healing track. I asked how long I would have to wear it, since I'm a manic claustrophobic. I had to wear it, the doctor told me, until the end of September, maybe October. It was Feb. 16. I banged the device onto the bowl of the toilet as I tried to throw up. In between whining about the halo and screaming for medication, I noticed that the numbness and tingling were still very present in my left arm and right leg. They became really prevalent when I would get up and walk around--I needed a cane to steady myself. The doctors explained that when they got into my spinal cord and neck, they found much more than they had anticipated. I had a strong case of arthritis around my cervical discs, and some of the nerves were unavoidably damaged in the surgery itself. Some of those nerves were the ones reaching to my leg. The ones to my arms had been damaged virtually beyond repair, and the doctors' only hope was that they had stopped any further deterioration and prevented any reoccurrence. This is when I first heard the term "degenerative nerve disease." It meant that the arthritis was steadily creeping around my nerves and remaining discs and would most probably render me unambulatory as time wore on. I spent five days in the hospital. They hooked me up to a self-pump device that would inject morphine into my IV every time I pushed a button. It would ring like a hotel desk bell when punched. For two and a half days, my hospital room sounded like the lobby of the New York Hyatt on New Year's Eve. At one point the nurses came in to tell me that I had injected five or six days' worth of morphine in half that time. I left the hospital with a sheath of prescription sheets--everything from Medrol dose packs to Neuratin nerve stimulators to Carisprodol muscle relaxers to Lortab painkillers. I was headed home. Well, not home, really. My parent's house. Let parental bonding begin. I lived on my parents' den sofa, in the halo and on medication, for almost nine months. This alone should make me (and my parents, I must concede) a shoe-in for the Congressional Medal of Honor. Since both of my parents work, I needed someone to tend to me like I was some old Mr. Potter wheeling around an old mansion with a shawl wrapped gently over my lap. We hired an elderly lady for three days a week to come over and "nursemaid" me in every sense of the word: make my lunch and dinner, change the bed sheets, do light housework like dusting or vacuuming, and, yes, my friends, bathe me. Now, had this been Morgan Fairchild or Elle Macpherson or Nicole Kidman or even Marlo Thomas, I'd have looked forward to it. But I got Olga, the Viking Goddess of Agony and Torture. Every day found me getting up and beginning my daily ritual of memorizing the scripts of The Dick Van Dyke Show, Matlock and McGyver. I would then get my medication from Beatrice (a.k.a. "Olga"). Then it was Law & Order and Mad About You. And then I'd sneak some more medication halfway through NYPD Blue while Beatrice was doing laundry or making lunch. My worst fear became that the batteries in the TV remote control would go dead. Meanwhile, the screws in my head felt like bullet holes. The stabbing pain along my shoulders felt like the bass drum in a marching band. As the pain not only continued, but also increased, I went to see the doctors for routine post-surgical follow-ups. Tests revealed that the bone graft had not adhered to the bone spurs in my neck and that the subsequent arthritis and stenosis had become worse. Another surgery became the best solution. During this surgery, doctors would insert three titanium plates and 12 hardware screws. The plates would be screwed directly into the bone of my spinal cord. The titanium plates and screws were to be permanent, and I was informed that I would always be in pain, sometimes very aggravated pain, for the rest of my life. I was back on my parents' couch for five months. This time around, friends and family were bringing food and sympathy cards and flowers to my parents, not me. By now, Mom and Dad were asking to share my medications. Late summer was hot and the brace I wore made it even hotter. It acted like a heat-seeking missile, a sun magnet when I'd sit out on our terrace to get some fresh air. Of course, Beatrice and the quilt she was making would join me. About every 15 minutes, she'd come over with a cotton ball drenched in cold rubbing alcohol and swab the points on my head where the screws had been and which were now oozing pinpoints of pain. When I went to "go to the bathroom" and sneak a couple of more hydrocodones or Somas, that was really nice, too. October came around and I was feeling like I could make it on my own. The parents helped me pack. They took me home, helped me inside and got me settled. My mother, with eyes only a mother could have, looked at me and told me that they would always be there for me, would always be nearby to help in any way they possibly could. They turned one last time at the door, waved a silent goodbye and left me alone. I immediately heard a rousing chorus resounding from the parking lot. Of course, I jest. Without them, I couldn't have survived the turmoil and frustration, or, truthfully, the day-to-day operations of living. Chronic pain sufferers (CPSers, for short) tend to look for anything, absolutely anything, that will alleviate the pain. Oh, sure, aspirin relieves fevers, Ibuprofen relieves aching joints and arthritis, Tylenol helps us get through the cold and flu season. These don't do squat for the CPSer. I'm talking about "prescription drugs," the good stuff, the stuff that invariably costs more than $4 apiece. We CPSers know that the degree of relief is directly proportional to the amount of money it costs to get it. If it costs $114.84 for a dozen after the insurance co-payment, we get very excited. It's really easy for someone who's not in the throes of chronic pain to turn his nose up at those of us who rely on prescription medication. "Oh, you're an addict," they say, or "You can't quit taking those, can you?" Screw all that. They have no idea in hell what it's like. I've been there when these things turned on me--Benedict Arnold in a small blue tablet, Judas in a capsule form. If someone had told me way back when that I would end up a slave to a pill that would allow me to go get the mail, write a check, get out of bed, I would have laughed at them. Painkillers took over my life for almost three years--especially Soma muscle relaxers. But don't get me wrong. I literally could not have gotten through the post-surgical acute pain without those damn drugs. I was so hurting and so begging for relief (especially with that "halo" on) that I truly needed them, no question about it. And there's no shame whatsoever in alleviating pain with painkillers when you are really hurting. It's when you start taking the pills for "fun" that the problems start. One day, I found myself "flopping" the dosages. (If the prescription reads one every four hours, and instead you take four every hour, that's "flopping" and that's a problem. To wit: One night, I invited a couple of friends of mine, Sarah and Carl, over for dinner. I was in the kitchen cooking up a storm, and the time rolled around for me to take another pain pill. I popped two and went back to my stove. I was stirring and checking baking times and chopping lettuce and gulping down a few beers. The next thing I knew, I was waking up on a hospital bed. There was a doctor leaning over me and my friend was at the end of my bed. My head hurt. "Do you know what happened?" Carl asked me. "Uh, no." Then the doctor leaned back over me and said, "You've received quite a trauma to your head. I had to give you eight stitches." Turns out, when Carl walked into my condo, he found me lying on the kitchen floor with a big pool of blood around the top of my head. He got me to the hospital. There were a number of other incidents. Waking up and finding out it was Thursday instead of Tuesday. Hearing from my friends that I fell down a flight of stairs at a Super Bowl party and having no recollection of it. Walking into my kitchen in the morning and wondering why the stove was still on. Dead-bolt locking my door and hiding the key before I took the next dose, hoping I wouldn't be able to leave home during some somnambulistic tirade. I had become addicted to pain-killing drugs. They had become not simply a relief for the pain, but a steady diet, as much a part of my daily routine as brushing my teeth. And I have to admit, there was a long stretch that they made me feel good. Real good. It got to the point where I would relish my pain because it gave me a viable excuse to pop more pills. Does this sound insane? Neurotic? Obsessive? Pathetic? To a normal person, it must. But chronic pain suffers aren't normal. Normalcy doesn't include being in pain all the time. And pain-killing drugs are our saviors. Yet, we need to keep a clear head, as much as we can, when it comes to medications. The easiest thing in the world for us to do is administer scripts to ourselves and hope that the false relief they bring will take us through. To the next meal. To the next friend's visit. To the next time that I can go back to sleep in some sloppy dream-state and hope I don't wake up in the middle of the night when nothing good is on cable. The pain of addiction is a pain of the soul; it can be as traumatic, disheartening and deadly as any chronic physical pain we endure. As it turned out, I needed help. If you think I was depressed because of chronic pain, you should have seen me going down that driveway to the Pain Management Center, one of seven such facilities in the nation, where I would spend the next seven weeks. My father had driven me. About a half mile before the entrance, we passed a little roadside beer joint. I couldn't help but wonder how much they made off addicts either stopping in for one last shot before being committed, or as the first oasis they could reach after they'd been through the program. I had an appointment to be admitted at 1 p.m. and that morning, before I left, I sat around my apartment scared to death. What really scared me was that the place might deprive me of my medications. But the first thing they did upon my admission was give me a Valium or a phenobarbital. Maybe it wouldn't be so bad after all, I thought. But then I found out those pills would only be offered to me twice a day. I freaked. Completely. TWO Valium, TWICE a day.... That wouldn't get me through 10 a.m. But then I learned that I would receive a thorough examination, and a doctor would prescribe a "treatment program" that would include narcotics. The narcotics would be dispensed only at certain times, and I would gradually wean off them to a safe level. I breathed an audible sigh of relief. The nurse just looked at me and smiled. She'd seen 1,000 others like me. As the drugs kicked in, this orderly ransacked my luggage. He asked me to remove my belt and shoelaces, took away the only necktie I'd brought with me, and also confiscated my cash, so I couldn't call a cab or pay a sneak to kidnap me. When I hobbled out into the barracks-like unit, I noticed locks on the outside of my bedroom door. Seeing the patients wandering around the "lounge" area, I thanked whoever developed Valium many times over. But some of the other boys and girls needed nothing less than a Zulu blowgun tranquilizer dart to the neck. One fellow patient, right before dinner, began throwing his body, full force, against the glass partition that separated the room from the nurse's station. He was screaming in pain and anger, throwing up quite a bit, and I learned later that this was the result of a fairly routine Dilaudid withdrawal, characterized by uncontrollable muscle cramps, major nausea and frantic paranoid hallucinations. Around 6 o'clock that evening, the head nurse gathered us together to walk to the dining hall. I told her I wasn't hungry. She didn't give a flying flip. That first night, I lay on my bed, trying to read from a magazine left in the lounge. I couldn't help thinking about how, if I had been at home, I'd probably have just popped about five amitriptyline, a few Valium, a Soma and a Percocet or two just for good measure. It was then a nurse came around and gave me a phenobarbital and a Valium to help me sleep. I wanted to nominate her for sainthood. I was awakened the next morning at 7 a.m. A young woman who had been admitted earlier that morning had already been caught shooting a Dilaudid in the bathroom. She was now restrained by small leather wrist straps and was sleeping. "Your 'buddy' will be here in a minute to help you get to the cafeteria," a nurse told me. My "Buddy"? Oh Jesus, what the hell was this, Camp Chickamuaka swimming class? I wondered why I needed a buddy to get about 70 yards to the cafeteria. I quickly found out why. When you walked to the cafeteria, the driveway out of the place was right there, beckoning you to head down the pavement toward that little beer joint. Or, you could slip behind the building and shoot up a Dilaudid you sneaked in under your sock when no one was looking. My buddy's name was Mike, and he would escort me for my first three days there. "I want you to try and walk with me to the dining hall without using your cane," he said. "There's no way I can do that," I told him. "We're going to see what we can do about that when we go see Dr. Bradley. But I want you to try and walk just from here to that building over there without using it, OK?" I handed him the cane the way a 5-year-old would try and wean himself from his blankie. Sure enough, when I tried to stand up from the bed, down I would go. But just as sure, Mike was there to catch me and hold me upright. "You're doin' good, doin' good," he said. I got about a third of the way with the support of Mike's arm. Entering the cafeteria, I stood in line quietly, leaning on the cane that Mike had been nice enough to return. The chow line gossip was at a frenzy. Through eavesdropping, I learned that someone had successfully committed suicide last night in the detox wing, two doors down from my room. It was the young gentleman I'd seen flailing himself against the nurse's station window. He'd used the spring hooks from his bed frame to slash his wrists. I moved on down the line. The place was alive with noise, laughter and conversation. I got enough on my plate to feed, possibly, a small earthworm and I slouched to an empty table. My buddy Mike came up and sat down beside me. He asked me questions as he shoveled from the pile of food on his plate: where I was hurt, how it had happened, how long I had been on meds, which was my favorite one. He told me that I had 20 minutes before roll call. Roll call was a trip, literally breathtaking. There were Dilaudid junkies, spina bifida patients, people both knotted and deformed, Demerol and Seconal downer babies, folks in wheelchairs and walkers, wanton and wasted wackos, tranq freaks, boys, girls, blacks, whites, Indians, women, men, Polo shirts and tank tops, all slowly limping or rolling into the roll call room and taking their seats. No one went by anything more than a first name and a last initial, all part of the anonymity thing. Soon I had been assigned staff people to handle my program. I had a case manager, a process therapist, a spiritual guidance counselor, a medical physician and a psychiatrist. And I quickly learned that I was the envy of almost everyone there. My condition allowed me to take lots of medication: three Actiq lollipops a day (a sucker-like thing that is actually a combination of fentanyl and opiates), four baclofens, then a Valium and two amitriptylines at bedtime. I had people bidding everything they owned for just a bit of what I was getting. As time went on, you grew to know people who were beyond belief, beyond your wildest imagination, and unfortunately in some cases, beyond help. Yet, through the six hours a day in different therapy and community groups, you began to feel a weird, platonic, even cosmic bond with your classmates. Take Monty. Monty was a pediatrician from Pittsburgh, and he was here because the Drug Enforcement Administration had raided his practice and found a bag of 1,000 Valium under his desk in his gym bag. They concluded that Monty didn't require Valium--certainly not that quantity--to practice his field of medicine, and the subsequent plea bargain in court had landed him at The Center. There was the ob-gyn who used the bathroom of his patient's delivery room to swallow three or four hydrocodones for his back between her contractions. I met a sweet and beautiful nurse, an RN no less, with horrible leg cramps, who divulged she would replace her terminal cancer patients' morphine with a saline solution and use it herself. I spent a whole lot of time in groups and doctors' offices. There were group therapies and spirituality sermons that cascaded me further and further away from the outside world and deeper and deeper into some parallel universe where everyone and everything was going to be just fine. I finally felt a refreshing order in body, mind and spirit that I truly had never even thought possible. Sure, my pain was still there, still reminding me with each step. But I felt revitalized, rejuvenated. Part of me had never felt as safe and lucid as I felt in these confines. But the other part of me was so excited about getting out, getting on with the rest of my life. A life free from the bondage and the hassles and the nightmares involved with using the pain pills that I had constantly craved. I can honestly say I've been sticking with an aftercare plan that includes pain medication on a very strict regimen that I hope will last me the rest of my life. I'm proud of the fact that I'm sticking to it. Believe me, there are times when I'm hurting like hell and there's pain relief less than a foot-and-a-half away. But I won't take it until it's time, and that makes me feel as good and as proud as almost anything I do. I thank God every day that I have a bevy of friends who take sympathy to a very high degree with me. They are there for me, in every way. They drive me, they constantly offer to help in any way they can: getting groceries, picking up my dry cleaning or stopping by the drugstore if I need toilet paper or dishwasher soap or whatever, helping me up and down stairs and roadside curbs, offering to get my plate at a buffet supper--all the things that CPSers sometimes find virtually impossible to do. That's all we really ask of people. Not that they empathize with what we're going through, because we'd never wish our condition on anyone. But we do ask that they understand that chronic pain is exactly that, with us all the time.