If you have ever lived with intense pain, then you know that being short and not having access to the drugs that you know can help you, is nothing short of terrifying. But that terror has a long history, and I will tell you about that later. If you have ever lived with chronic pain, then you know the fear of the next instance can be paralyzing.
All I know is my pharmacy has new ownership, and although I’ve gone there for years for the same medicines for cancer, for epilepsy, and more, that these new people – some of them – look at my valid scripts with a squint in their eye, wondering if they are real, and often, treating me like an addict, not a cancer patient, as one who is trying to “pull one over.”
They make me wait several days for the drugs because they don’t keep them in stock, and the fear or running out makes me feel unsafe and vulnerable, and I have spent too many nights in the emergency room, traveling fast in the back of screaming, whirling ambulance the long distance to the hospital from our house.
You could argue that I’m psychologically ‘addicted’ to narcotic pain killers. I say this with quotation marks because to me, addiction means out of control. Addiction means you need to take the drugs. It means unmanaged care, misuse, no legitimate use. I don’t yet know whether I’ll need to take them or not; I just know that the choice is available, should I need it – sort of like being pro-choice. I may never need that service, but in principle, I believe we should have options. To me, and from what I have read, addiction means needing more. Addiction is not a choice – it is physical dependency, but more, it is psychological and about getting high. It is not being monitored by doctors. It is taking narcotics to get high. But I don’t get high from these pills. I ask my doctor “Why Not?” as if I’m being ripped off. Hey, if you have cancer, the least you can get is some small pleasure. He says with that much pain, it works on the pain. If you have no pain, then you get high. This blows.
The stuff they put in my i.v. before surgery made me loopy and high, but then, it was supposed to. The user drug of choice these days -oxycontin – which I have taken but never liked, so switched, has never made me high. I wish I knew what it did to all those people who abuse it – who knows, maybe then I would become an addict. Anyone can. But what my doctors tell me and what I read, is that if you take drugs for pain, they kill the pain but do not make you high. Maybe they are too busy cleaning up the mess. I have had chronic pain for a long time now, that I wouldn’t mind being a little high – but it’s not going to happen.
I am a cancer patient. I am also a person with an auto-immune disease and epilepsy. When I took Demerol, which I did for a year or more, I never increased my dose. I took the prescribed amount and was pain free. But because it is not the usual drug for head pain, for what they say I have, which is complex hemipelegic migraine. Because narcotics are no longer the recognized treatment of choice for head pain, I have had to try over twenty-four medications over the past six years. I was everyone’s favorite guinea pig; a temporal lobe epileptic with a rare auto-immune disease, cancer, and a history of meningitis. My medical records are a tome of rare infections; impetigo, sjogrens syndrome, malignant melanoma (and I was never a sun worshiper). We tried drugs both narcotic and non-narcotic; some worked but with intolerable side effects, others didn’t work at all – didn’t even touch my pain, and some actually increased it, causing what they call ‘rebound pain.’
Now, we have settled on three drugs, some narcotic some non, and since it has taken us so long to get here, my doctors are happy to stick with this program. After all, they want to make me better – and, in as much as anyone can, they have.
It’s been four years since I had a large part of my shin removed along with six lymph nodes. I had discovered a black freckle on the spot, which was biopsied, and when it came back as an aggressive melanoma, I underwent a radioactive-dye scan that would highlight any potential problem spots. . They found cancer growing wide and long like a mold, burrowing into my skin, my muscle.
The black mole that served as the red flag was smaller than a penny, the size of a button on a Gap white oxford. I left the hospital that day with a date for surgery, and when I stepped out into the daylight to get my car, I realized I was no longer just me; I was a cancer patient. For a minute or two, I stood frozen. Then I called a friend from my cell phone and told him the news. It still didn’t seem real. None of it seemed real until two weeks later when, one hot day in July, I underwent a surgery what would both save my life and change it forever.
When I awoke from the surgery, I was not prepared for the pain. I had a machine that beeped and a black cord with a red button. Noah stood at the end of my hospital bed when I cried, screamed that it hurt so much. “Press that red button,” he said. I did. Then I did again. Relief washed over me in waves. Pain was erased. When the nurse came to check my wound and change the dressing, I saw my leg for the first time; it had the mark of an apple of which someone has taken a large bite. It was red and swollen and bloody. The stitches were thick, like Frankenstein’s neck. I was not prepared for this. I was deformed, a whole chunk of my body was gone. I wondered what they had done with that part of my leg that had been with me for my whole life; that had played hop-scotch, traveled the world, wrapped around a lover’s back. Part of my body was gone, and I felt like a friend had died; like I had died. .
The medicine made it easier. It helped me through. When I was in pain, it took it away, and with that button next to me, I felt safe, just as one seeks to be safe from a predator, and believe me, pain is like a predator. It stalks you, leans over your shoulder, waits until you are weakened, and then it sneaks up and strikes, hard and fast.
When I left the hospital, I was sent home with two bottles of pain medicine; Oxycontin to take ‘in-between’ for ‘breakthrough pain,’ and Demerol, to take for more immediate relief. The Oxycontin, they said, was longer acting. The Demerol was faster acting – a baseball bat for my predator, Oxycontin the jailer and guard to keep it at bay. And it worked. A nurse came every day to clean the wound and check for infection, and I did get infection. I developed cellulitis, which is another form of fascitis – that rare flesh-eating disease that we joke about with friends.
Redness crept up and around from where they had removed lymph nodes from my groin. It spread out like a sunburst and it hurt like hell. I was rushed back to the hospital, my surgeon paged. I was admitted again and when my surgeon arrived, he was furious that I had not been hooked up to a morphine drip. That I was in pain. A doctor who knows me well and has seen me for years, and who knows that while I’m no martyr, this shit, all of this illness is hard, once said to me, “There is no reason why someone like you should ever have to be in pain.” And I couldn’t agree more. With this doctor’s help, I had everything I needed and I felt safe.
But there was and there is still another kind of pain. One that is emotional. Cancer has taken away my sense of safety. I now know that I am not immune – we all think it will happen to someone else. None of us are prepared for this diagnosis; it sounds absurd the first time you hear it. It can’t be me, you think. Not me. Then and now, there are times when I am consumed with anxiety, with rage, with worry. When I wonder if I will ever again feel anything physical that is pleasurable.
When you become as ill as I became, no matter how hard you fight, you are redefined by those who love you; I am no longer me, just me. I am a Patient. Someone who needs care. A worry to others. I am a person with a prognosis, with certain surgery in my future, number on my head. It is difficult even for someone who truly loves you to perceive you as sexual under these circumstances. Cancer is not sexy. Gauze and tape and stitches and an i.v. drip next to the bed are not sexy.
I have seen my those I love turn away from me. Seen them hurt and afraid, wanting to save me, but not knowing how, knowing it’s not possible. With every surgery, I lose part of myself, part of my body, so that by now, I look like the turkey carcass after Thanksgiving dinner. It is insult to injury that I am losing my husband as well; that he wants to be Superman and save me but can’t, and the pain of that is too much for him. Maybe because my husband fears losing me, I begin to fear losing him too. He didn’t sign up for this.. He fears my death. I do too.
One day, I am home as I always am, writing, editing – or rather, I should be. But on this day I can’t because I can’t stop crying. My mind wanders. Then it occurs to me: take two Demerol. In half an hour, I feel strangely detached. With the Demerol, I am able to abstract the problem; Demerol has made me generous. I realize, or think I do anyway, that it is actually okay if this problem I have exists. If I have cancer and might die.. At least, that’s what I feel on this day. I am better because I am so understanding, so in touch with my feelings.
On this day, I begin a book. It is a philosophical exploration of the many forms of love, stories of childhood, brothers, first kisses, my beautiful mother. I work on this book every day for about ten hours a day, and without thinking about it anymore, I take two Demerol in measured doses. I never increase the dose; I stick to the prescribed amount, so I am not abusing the drug. At least, I don’t think so. I am using it for ‘off label’ use. I recognize that there are other benefits to narcotics besides pain relief. But let me clear, I am following the instructions on the label and I do not hide this from my doctor.
I think of Cary Grant’s experiments with LSD, which he used over sixty times. How doctors right here in America used to prescribe MDMA – Ecstasy – as a psychotherapeutic tool. I’ve never been a drug addict, and I like to be in control far too much to become one. And I’ve used LSD, years ago when I was young, and I don’t regret it. It opened up the world for me. It didn’t change me just for the period of time I was using it. It changed me forever. I saw the world in all its beauty when I was on acid, and I still see those things – when I look. I wouldn’t do it again; I wouldn’t do any illegal drug again. I have far too much respect for their power to do this, and besides, I’m too old to be so foolish.
But when Cary Grant said LSD helped him get through some serious psychological issues, I believe him. He said it make him a better person. I believe that too. I’m not condoning the use of these drugs, primarily because they are not sanctioned by the federal government and you could easily get bad shit and die. But under the care of a physician would they be useful? I think so. I have several friends who were prescribed MDMA back when it was legal. Who went through psychotherapy with this drug and found out things about themselves – who got better.
This isn’t about getting high. That is something I don’t understand – maybe because drugs don’t make me high. And that floaty feeling before surgery? Well, if that is what all the fuss is about, why bother. What they did do for me was make me more emotionally stable, more able to express and access how I felt, and let’s be clear, they took away extreme pain. I found I could function better. I was more productive. I didn’t sit in front of the television and vegetate as I had been – which is what I think of when I think of drug abuse. The opposite happened. I was back in the world again. And more, I was able to express my feelings more easily because Demerol had knocked down those social inhibitions.
No, I did not run into the street naked. when I say this I mean that I was able to talk to my husband and tell him how I feel, that when I needed to cry, Demerol unlocked me and I cried because I needed to and it make it okay. Demerol, though I know I’m not supposed to say this, made it easier to be me. Not me high – not me out of control – I was, if anything, more in control than I had been in months. I was kinder, more understanding, more thoughtful, my writing was improved, my agent was thrilled. My mother was “glad things were getting better.” I looked better – I actually felt like brushing my teeth and showering and maybe even putting on a little make-up and getting dressed. I had energy, initiative, focus.
Without my prescriptions I am less able to function. Part of it is fear – that fear of pain I mentioned earlier. To be clear, I’m not going through withdrawal … no D.T.s, no stomach upset, no flu symptoms. I am, quite simply, less focused, and maybe a doctor would argue that this in itself is ‘evidence’ of addiction, but I’ve been unfocused my whole life, long before I ever knew narcotics. In fact, it was only through narcotics that I found the focus I had been missing. Figure that one out. So, in short, I am who I used to be – which isn’t bad, but is problematic. I’m more rigid, less able to access my feelings, struck with the anxiety of my work, worry about everything, unable to see my situation – or any situation for that matter – philosophically or to abstract it.
Doctors prescribe Prozac and Paxil, MAOIs, NSAIDs, synthetic opiates like Ultram, pain-relieving and mood-altering drugs, and all without reservation. They say these drugs do not have the same high abuse potential, which is no doubt true, but we take them, and whether we realize it or not, we become physically dependent on these drugs just as we do with narcotics. Induce a foreign substance into your body for long enough and chemical dependence is inevitable. This is why doses are titrated up as we begin a new drug, and titrated down as we stop. We are advised not to stop taking any drug “suddenly.”
Take Prozac, as I have, and you change. I did, and for a while, I changed for the better. I never had to increase my dose once we had reached the ‘desired’ level, I managed it carefully, I was more able to function, more philosophical, more able to abstract my problems, more generous. In fact, I was a lot like I was on Demerol, only less so. In terms of taking away my chronic anxiety and worry and depression, the truth is Demerol worked better than Prozac, and hey, it also got rid of the intense pain I get. One drug for two problems; it seems ideal … dare I say, a good thing. With Prozac, I never had trouble getting a script, it came with refills, the pharmacist never gave me that “look,” which you know if you’ve ever had to regularly fill a script for narcotics.
I understand the lovely Julianne Moore in Magnolia, who, when the pharmacist looks at her askance as she tries to fill her dying husband’s script for Morphine, begins screaming, “You don’t know my fucking life!” The pharmacist who, just the other day, so judiciously told me it was ‘two days early’ to fill my script for a narcotic and refused to fill it until that exact date, has no idea of what it means to spend months of your life hooked up to an i.v. in your own home. To lose part of your body to an ugly, ugly disease. To have to learn how to walk again. To move your toes in physical therapy and feel a jolt of pain so intense that you would rather die than continue … but I did. I did and then I hiked cliffs in my native England, I rode a scooter in Greece, I learned how to tango. I overcame.
To me, Demerol is a drug that kills two birds with one stone: it both gets rid of my pain and gives me the sense of safety that I won’t have to face pain alone. It is my hired thug. My protector and guard. That while it kills pain it also gives me a sense of well-being and peace seems to me, a good thing, not a bad thing.
It seems to me to be an issue of control. Addicts and recreational users – do anything to get high. I don’t take anything to get high; like my epilepsy medicine, I take it to stay stable and to control seizures. I take the same daily dose of Klonopin every day that I have taken since I was seventeen years old. And though I shouldn’t, some days I don’t take it. I also take Ritalin for narcolepsy, and on days when I am sick, I don’t take the full dose because it’s okay to sleep. In fact, I have often taken less than my full dose of every drug I have taken, but I have never exceed the prescribed amount – not of any drug, including narcotics.
And for the record, I’ve gone without those for weeks at a time as well. At one point not too long ago, I was not having much pain so I did not take my narcotic scripts, but I filled them every month nonetheless to keep myself current. I had, in my bedside drawer, four hundred narcotic pain relieving pills. I never felt the sudden urge to swallow six or more at a time or take them for ‘shits and giggles.’ I had no fantasy of grinding them up and inhaling them in long, fine lines. No.
Instead, I knew they were there and I knew that if I got one of those three-day-non-stop-vomiting-meningitis headaches, my henchmen would keep me safe. They would beat pain to a bloody pulp, kick it out of the neighborhood, and if it came back again, they would take care of it again. Narcotics are the Mafia overlords of the drug world. They don’t take any shit, and they deliver what they promise. So we should fear them, for they are strong. And as a person who has come to rely on them to keep me safe from various pain from epilepsy to cancer, I respect them. I can’t imagine abusing them, because I know that, at that point, it is my ass they would be kicking, and they would take me out. Of this I am sure.
What if you take a drug for legitimate use but notice too an improved mood. Not the “Warm Fuzzies” but to be bold enough to say, You know what … I also feel better on this drug! I know plenty of other cancer patients with chronic pain or fellow severe headache sufferers who have noticed the ‘off label’ and additional benefit of their painkillers. God help us if we admit to our doctors that narcotics not only relieve our pain, but also give us a sense of well-being. Isn’t that the goal of Prozac and Paxil? Freedom from pain, worry about pain, anxiety, inability to focus, worry. Why should it be so verboten to say that narcotics and/or opiates, may bring the additional benefit of well-being and stability of character?
Why can we not discuss ‘off label’ use of narcotics? Every year, we find out more about certain drugs. That they work for something other than what they were developed, or initially thought to relieve. Like dandelions in springtime, articles about these additional benefits crop up everywhere – appearing in journals like Lancet and JAMA and all over the Web.
Doctors are thrilled to discover these new uses. In hospitals all over the country, pens are poised over prescription pads with doctors eager to try out these new benefits on any patient who is willing, or any patient who doesn’t know the difference and just takes what s/he is given. That narcotics and opiates have effects other than as analgesic is no secret. Doctors have known this for years. So have writers, artists, actors, housewives and executives, competent parents. I have, among my friends, at least two who take narcotic agents every day for ‘legitimate’ use but have also admitted to me, but never to their doctor, that they have noticed other benefits as well.
None have ever said, “Hey wow, let’s drop some Percocet and get high,” because it doesn’t work like that. As I’ve said, they all report what I myself have experienced: a sense of well-being and an anti-anxiety as well as anti-depressant quality. They tell me in hushed tones about these things, as if they were shameful secrets, and at various points, each of them has questioned their use of these drugs and wondered or worried whether or not they were losing it. None of them have ‘lost it.’
To hell with the stigma and the the dirty little secret, that we all know anyway, which is that there are other benefits to painkillers – side effects that are desirable. I stand by my henchmen as they stand me; like the guys in the old neighborhood where I lived for years, they look out for me. They’re discreet, hang-back, no need to advertise. But mess with me and they’ll be there. They’ve helped me take back the neighborhood of my body, keep me safe from pain thugs, and just knowing that these hit men are around makes me feel safe. Screw with them and they’ll screw with you – every idiot knows that, or should. A lesson those who abuse these drugs should, or will, learn. In the meanwhile, treat them with respect and you’ll get that back. Their loyalty, their always-on-the-job-take-no-prisoners attitude to any pain that screws with me. That I like them for this – even love them – this is my dirty little secret. One for which I should be ashamed … but I’m too tired for that now, too experienced. Dare to be unpopular, dare to utter the truth and you will be judged. I will be judged. But, honestly, at this point, what judgment hasn’t been passed.
Julianne Moore was right, “You don’t know my fucking life…” And if you do, then perhaps you understand. Perhaps together, we can admit that of which we are supposed to be ashamed, like red-faced children – that we feel safer with these drugs, and if we’re really honest, that they make us feel emotionally just that little bit better when It All Comes Down.