Uncommon Pain

            I’ve spent the last two days trying NOT to think about it—the pain—but pain has its own way of deciding whether or not you think about it. When it becomes a fixture of everyday life, it makes sure you don’t forget it. So, I am a chronic pain patient. No, I am not a drug addict. That cliché has been done to death—the person in long term pain who becomes addicted to their pain meds then decides to take more and more to chase the ever elusive high. I don’t get high when I take my meds. The pain just recedes and I function more normally.

            But pain is a motherfucker. It doesn’t play by rules, it doesn't respect boundaries, it is unpredictable. Especially long term pain. Long term pain is a bugger, it’s the ass fuck you never asked for, the ultimate motherfucker.

            Ah, Selene, you may say. Now you have become coarse, you’ve become profane. What happened to all the poetic language in your little uncommon life?

            Chronic pain takes everything good away from the person it afflicts. Chronic pain takes the sufferer to two predictable places: suicide or apathy; if it isn't controlled. And controlling it is way more than just popping a pill four times a day.

            But I think I’m ahead of myself. Anybody who really gave a merry fuck about another person’s pain would have the good sense to ask a simple first question. How did you come to be this way? Where did the pain come from? And is it all physical or is some of it psychological? And how are you dealing with both things, if indeed both apply?

            Fair, fair, fair questions, all of them.

            It started when I was six years old. For a young old crone like me, that was a lifetime ago. I fell down a set of porch stairs and broke my arm. It was a bad break, right at the elbow joint. The local doctor could not get the bones to set properly. After trying for an hour while I screamed and my family restrained my father, they took me to Vanderbilt Hospital in Nashville, TN because we lived near there at the time. It was 1966.

            The doctors couldn’t find a pulse in my arm. They put me in traction for two weeks, then on the amputation list. The day before my arm was to be taken off, they found a weak pulse, put me in a cast and sent me home. Disaster, averted. Shriners paid off the monster hospital bill.

            But such injuries are rarely without complication. Neither was this one.

            When the ordinary circulatory system is interrupted, given enough time, the body develops coping mechanisms called collateral circulation. Basically, it grows new arteries and new pathways to carry blood and nourishment to the tissues. But these collateral systems are never as efficient or as complete as the original system. When nourishment to the tissues and other systems is less than sufficient, there are problems. In my case, I developed something called Complex Regional Pain Syndrome. It has waxed and waned for a decade or more now.

            It’s just pain, you might think. But it’s not. It is pain that’s fucked up. Pain is supposed to tell you that something is wrong with your body, fix it or knock off whatever you’re doing. But this pain is different. This pain is injurious in and of itself. It attacks the very nerve fibers that carry it, it interrupts circulation, at its most extreme, it begins to devour bone. The pain itself must be managed. And there lies the root of the problem. The very medications needed to interrupt this cycle are viewed by society at large with very suspicious eyes these days. They make doctors very nervous because the feds are standing at their backs like rabid dogs frothing at the mouth.

            The story of my arm doesn’t begin to address what I did to my back while nursing. Let’s just say those problems are not going to get well either. When you have chronic pain in more than one area of the body, it doesn’t take long for the whole system to fuck up and the person experiencing the pain, and there’s always a person behind the pain, has trouble distinguishing where it’s coming from, how bad it is, or what to do about it. That’s why chronic pain makes addicts of so many people. They begin as simply goddamned confused and scared, trying to cope, trying to keep on keeping on, then one day, pretty soon into the whole mess, they take too much of one thing or another and get high.

            Can I even tell you how good it feels just not to hurt? I don’t think I can if you’ve never really hurt.

            Then they confuse the high with being taken back to a state of simply having no pain and, slam, bam, thank-you ma’am, they’re addicted.

            It’s a slippery slope. One you don’t want to go down if you have any intelligence at all because I know people, very smart people, nurses, doctors, engineers, who’ve had pain, got addicted and ended up dead. Chasing the high. See, it takes more and more to get high. One day they snap, take too much, and wake up dead.

            The problem with chronic pain is that it’s a slippery slope, too. It takes a while to find the right dose to control. I don’t mean days, I mean weeks of suffering with a dose or a drug that’s insufficient to control the pain you have. Weeks and weeks. Then, when you find the right drugs in the right doses, this could be a year or more in, the pain changes, morphs, moves, gives you other symptoms to go with it, like sleeplessness, depression, difficulty concentrating, the tip of the iceberg. You see CRPS spreads like cancer. I now have involvement in my throat, my teeth, my gut and my blood pressure. All from CRPS. Who can work like that?

            Not a young crone, I’ll tell you that.

            Then what?

            Then you gotta get drugs for the other motherfucking symptoms. Pretty soon you’re a walking, talking, fucking pill factory and your mother is looking at you like you’re an addict, talking to you like one, too. So do the people at some pharmacies. And you, yeah, you with the problems and the pain, you have to figure out how to pay for it all because let me tell you, my friend, pain doctors do not take referrals to treat Medicaid patients and if you have chronic pain but no pain doctor, all you’re left with is chronic pain.

            Yeah, that’s my rant.

            So, it’s been like waking up and realizing you’ve had the sword of Damocles hanging over your head for practically your whole life and wondering how much of it had to do with the fall and how much of it had to do with the five trillion times I heard after that, “Don’t do that, you’ll  break your arm again.” As if I planned it. As if, somehow, it was my fault. People cast spells every day; most of them just don’t realize they do it.

            It’s all over now though, all but the living with the pain. I mean, once you’re fucked, you’re fucked, doesn’t much matter if you figure out why—the fall or the constant negativity about it. And, truth to tell, I don’t think about that aspect of it much. Good for me.

            And how long have I been treated for this uncommon pain? About ten years, off and on. But here’s a secret about living with chronic pain. Knowing you’re never going to be well, that it’s never going to be over, well, that does a number on your head. Yeah, you saw the psychology going in, didn’t you?

            If you’re not hurting, you’re thinking about hurting. And, in the end, isn’t this pretty much just hurting all the fucking time? Yeah, yeah it is. The thing is, chronic pain doesn’t feel like acute pain. Not at all. Acute pain is sharp, cutting, right now. Chronic pain is deep and intense and the kind of sensation your body avoids acknowledging until you find yourself rocking on the bed wondering what the hell is wrong with you. Then after about 10 minutes or 10 hours depending on your experience with it, you sit up and say, “Well, shit. I’m hurting and I forgot to take my meds.” And it’s soooo much worse at that moment. So much worse. Because you know you’re now going to have to wait for the meds to catch up with the pain again. To chase it down and knock it in the head.

            If there is anything good in all this, and that’s a big if, it’s that pain is also an intense focuser. It forces you to focus. Now, not smart people will focus on the pain itself. And that’s not a judgment; it’s just a fact and it’s an easy thing to do. After all, pain is right there, in your face every moment of every day.

            A smarter thing to do with the focus is to turn it inwards—to shine a light on who you really are, what you really believe and think and feel. And to be honest with yourself if with no one else about what you find down there, past the pain, in the cellar of your soul where you live. Pain can create situations in your life where you make decisions and they will not be decisions to be taken lightly because pain will take you to the place where you really live.

            Are you really a nurse, even though you were one for almost 20 years? Or are you a writer with minimal chances that anybody will read or care about what you wrote? Pain will take you to the place where the honest answer lies. And like it or not, you’ll know what you have to do. Are you a lemming or a troublemaker who isn't interested in being told what to think but only interested in having your own questions about God/dess, yourself, the nature of the universal, existential shit like that, answered?

            I have truly known only a couple people besides me who are in chronic pain. By truly known, I mean they were intimately connected with my life. Everyone, everyone, everyone I’ve ever known who has chronic pain sooner or later comes to the place of focus. Most of us come out the other side and can never be the people we were before we went in. The rest of us don’t come out. They cannot take the truth of what they find. They end their lives, either slowly or fast. Or they simply lose their minds. Stephen King said no one could chart what goes on in that lonely blue hell. We simply come out the other side, profoundly changed, or we don’t come out at all.

            I don’t know what I will do with this uncommon post. It seems too intimate, too intense, and yes, probably too vulgar to share…..that’s a lie. It’s my truth and if it can help anybody I will share it.

            If you or someone you love is in chronic pain but you don’t know what to do or where to turn, please google “chronic pain help.” It should take you to a list that includes legitimate organizations that can help people in pain. Look for the .org at the end to make sure you’re not being directed to someone selling something. These organizations are supposed to be uniquely qualified to help those suffering, both patient and family. I wanted to list them but when I called to ask was told to send a copy of this post so the PR person could decide if the organization wanted to be associated with it. Really? Really? Well, I don’t want to endorse on my blog any organization that needs to edit me before they’ll help anyone who reads this!

            Never forget my brothers and sisters who suffer you are not alone and your pain is uncommon because it belongs to you. And you also live an uncommon life.

BB-Selene