Brought to you by the students of the University of Cincinnati College of Medicine
Read this out loud. Words are meant to be heard.
3:13 AM. It’s a Friday night. Well, technically, I guess its Saturday morning. The bars were fun, but I’m tired now. Really tired, actually. Laying here in bed is dangerous… I feel I may drift off at any moment. But I’m fighting it. I don’t want to go to sleep. Not yet, at least. I want to type. There’s something I’m struggling with, something that needs to be written down. The ideas aren’t quite forming like I want them to, but the sentiment is in my head somewhere. I know it is. Because fragments come to me and I love the language. I’ll admit, I derive and almost perverse joy in playing with words. It’s the thrill of the chase. Beautiful, mellifluous phrases are cavorting at the edge of my mind. I may be too tired to catch them, but I’m going to try. It’s worth the effort when you corral them and they merge and mean so much more than the sum of their parts. That might be what I love about language. The word I’m chasing is pain.
It's a simple word. It’s easily caught. But its associations are more diffuse, I think. They run a little faster. They’re harder to catch. You see, words can mean so many different things to different people. I don’t know what “pain” conjures to your mind’s eye. Maybe thoughts of playground-wounds from childhood? Perhaps that first, maddening heart-break? I don’t know. I’m not sure. I guess I’m feeling this out. My thoughts are indistinct and I don’t know what I’m driving at. Not yet. But I think I do know this: whatever “pain” makes you think of was temporary. That’s what I would guess; that’s how it’s supposed to be. Pain is supposed to fade. I do know that. Even emotional pains, which I think hurt the most, eventually dull with time. They may never heal entirely, but the scars cease to hurt. They’re supposed to stop hurting. I know that. And I guess from this idea I should conclude that, for most people, pain is imagined as a transient state; a moment in time which is certain to cease. Pain is supposed to be a passing traveler in our lives, and while he is certainly no friend, neither is he a stranger. We’ve all played host to his company, his inopportune visits. He comes, signals something is amiss and, his purpose fulfilled, kindly takes his leave. But that’s not what I’m thinking of. Not even close. Because to some, pain is not always a gracious guest. He overstays his welcome. He becomes an unforgiving illness which permeates everything. I know.
Because from the moment my eyes open each morning to the moment sleep mercifully closes them, I hurt.
It is hard to describe how this physiologic process can have such a deep impact on a person, but I feel as though I must try. I’ll admit, I think I write this as much for my benefit as for yours. There is a catharsis in putting words to paper. Words somehow put my mind at ease. But as for your benefit, I think understanding is the best I can hope for. I don’t know if many people do understand. I don’t know if they teach us to. You see, I’m cognizant of my audience – we are medical students. I know what we’ve seen so far. I know what we haven’t seen. Our medical training has its strengths; it conditions us to treat what we can effectively and efficiently. But it leaves us woefully unprepared to deal with protracted and unrelenting conditions, chronic pain included. I think this is especially true for conditions we call idiopathic, literally, “one’s own suffering.” I remember looking that up one time. The root meanings of words are powerful. We often recognize etymology without realizing it – it’s that feeling a word gives. Just a sense of it. “One’s own suffering.” It is a terribly apt description for inexplicable, chronic pain. They are horrible afflictions. They defy the prognostications of physicians and slowly erode at the hopes of physician and patient alike. They scare us. They scare me. Patients with such ailments can become symbols of failure and it is only too easy to refer them away. Maybe that’s why I’m writing this – I want you to understand so that you don’t dismiss it, so you don’t refer them away. I want you to comprehend pain as I know it. I want you to understand.
But to make you understand is not easy. Not easy, but, I think, not impossible. As I lay here in bed, though, I don’t know how I can do it. It should be possible… I mean, I’m not trying to explain color to one who is blind or music to one who is deaf. You’ve all experienced physical discomfort and perhaps some of you know true, unbearable pain. But I guess it’s not the physical hurt I want you to comprehend. It’s the impact it can have on emotions and thoughts over the course of years. I feel my moods and attitudes have been altered. I have been altered. But it’s nebulous; the change is difficult to articulate. I wish I had another’s thoughts to relay, because mine seem suddenly confused and formless. But they’re all I can proffer… all I can relate is my experience and the few insights I think I’ve gleaned. Maybe that will help you to understand. As I reread what I’ve written, though, I’m not sure it will be enough. I don’t know if I can really convey what I want to. I’m quite tired and the words are fast. Even if I catch them, I don’t know if they’ll hold the secret to expression that I need. I hope what I have to say is as meaningful on this page as it feels in my mind. Maybe it will be. Words can surprise you sometimes. They can be so… moving… There is a beauty in language which I’ve never felt in any other form of expression. Even in music, I listen for the lyrics, the words. And at the risk of sounding like a cliché child of the 90’s, I’m going to quote Kurt Cobain who said, “Thank you for the tragedy. I need it for my art.” Well, you know my tragedy, so here comes the art. Lyrics are all I can offer.
Pain is weight pressing against me. As I lay here, I can feel it throbbing into my mind, pushing against my thoughts and feelings. It’s gathering behind my eyes. My burning, blood-shot eyes. This computer screen is too damn bright and the light is compounding what I feel in my mind. The pain is feeding off the glare. It’s screaming to be recognized. It’s demanding acknowledgement. I try, but I cannot ignore it. Not for long. I’m fighting it, but I’m losing. Every day I lose. I am limited, impeded. I’m tired. Exhausted. I’m so weary of fighting. I’m so tired of hurting all the time. I want to run away, to do anything to escape this sense of anguish, but I can’t. There is no relief, no escape. I’m trapped here. I’m trapped here under this weight, inside this damaged body. I’m powerless. I hate that feeling, but I’m powerless. I think I’m pretty big and I think I’m pretty strong, but I am utterly helpless against this burden. I can’t lift it. I promise you I’m trying, but I can’t lift it. I feel nothing can. So I endure. I have no choice. I endure the pain and what it’s done to me and my life.
The pain brings with it a sense of loss. This isn’t how I hoped I would feel. This wasn’t the dream I had of my life. Pain wasn’t part of the plan. I had an image in which I was happy and content with a great career ahead of me and great friends and family behind me. I have the friends and family. They are great. I have the possibility of a meaningful career. I think it will be great. But I didn’t consider that chronic pain could rob me of the enjoyment. So the sadness has a sense of mourning. I’ve lost something. The tears I shed are for a dream deceased before it was even born. My ambitions for my life have been exchanged, against my will, for suffering. It feels unfair. Because regardless of what the objective goals for my life were, being happy was always an unspoken, subjective given. I assumed they were inseparable. I was wrong. And I know this may seem over-philosophical, but in my anonymity I feel myself growing bold. This is one of those insights I think I’ve gained: Hopes are omnipotent. Though merely conceptuses of the mind, they possess a powerful vitality. They are vibrant. They burn with a brilliance you may not even recognize. Plans and hopes are one in the same. So I implore you: treasure your imaginings of the life you someday hope to have. Please value them, protect them. For when that light is snuffed out, the darkness and cold are stifling. And while stifling, it’s not a quick violence of suffocation you feel, but rather a slow freeze. The warmth is gone. The light is gone. I’m groping to find meaning now, a handhold to rest on, but it’s so dark. A numb indifference is setting in. It’s hard to shake. I don’t think I’ll ever be free of it. Living feels like enduring and happiness is such an effort. The flame is extinguished and I have what remains. That’s how my pain makes me feel. Hopeless. Numb.
In a certain way, I know the physical pain isn’t the whole problem anymore. As I mentioned earlier, I feel as though I’ve been changed. This physical pain still bothers me, but its implications reach beyond the physical. I worry instead about how it has altered me and my thoughts. You see, pain is supposed to be temporary. I don’t know if the mind is really designed to deal with it over periods of years. I feel even if I miraculously awoke tomorrow pain free, I would not be whole. After so much time it leaves an imprint I think. Like an ancient glacier over the course of years, it has shaped the monoliths and contours of my world. Even if it was to melt from my life, the valleys would remain, carved from the substance of my mind. The patterns of thought and life would not necessarily change. My thoughts feel permanently altered; they are stuck in one of these dark, pain-carved valleys in my mind. I’ve been conditioned to feel bad, to hurt, to expect disappointment and pain. I hate it. I worry that I may never be better. And I know this may seem overly-dark, but I want you to understand what pain can do to someone at its worst – how it can alter them. I think if you can understand that, you can be a better physician. If you understand you can maybe help someone like me. If you understand you won’t refer people away to save yourself the fear of failure and frustration. I know it’s dark and unhappy, but it’s a reality. It’s my reality. And, I imagine, the reality of thousands of people like me, thousands of patients searching for relief. I can’t believe I’m the only one who feels like this. I can’t be the only one, sitting in the twilight hours of the morning, contemplating pain and its consequences. I can’t be.
But I don’t know if I’m conveying the sentiment correctly. I’m not sure a description of feelings is the vehicle to achieve understanding. But the feelings impact my actions and the sum of our actions is who we are. I love words, but talk is cheap. Actions mean something, and the pain has had its impact on my actions, particularly my social interactions. I am certain of that. I feel hesitant to engage in relationships, friendly and especially romantic, because I fear people will discover what ails me. I fear discovery will lead to rejection, because they will realize my life carries with it the stigma of suffering and the accompanying lie. Because, in a way, what I present to the world is a farce. I fear that they will discover, that you will discover my untruth. Because I’m lying to you, all of you, every time we interact. I’m lying to you when I tell you a joke and make you laugh. I’m lying to you when you ask how I’m doing and I say, “Fine” or “Great.” I’m lying to you when we go to bars or parties and I look like I’m having fun. I’m lying to you when we pass in the halls and I smile. I’m lying to you, and friends aren’t supposed to lie to each other. But I do it because I know rejection is the other option. It would not be an outright rejection, but I know in time it would come, because I have little to offer. I have nothing to give a friend if my behavior reflected my emotions. If every time I responded honestly to your inquiry of “How’re you doing?,” you would soon stop asking the question because the response would be saddening. You prefer the lie, and I don’t blame you. I do my best, but the pain does seep through. My moods can swing wildly and I know I’m unpleasant company when I’m hurting. I’m apprehensive to make plans or promises because I might have to retract if my pain worsens. I worry I exude suffering in my face and my speech and that I will be found out. I am at the mercy of my pain, and he knows little compassion. These are my actions. This is how pain affects me. I don’t want to be rejected. I don’t want people to know. I guess it’s the fear that paralyzes me, but I know it’s the pain that causes it. The pain forces my isolation.
But the thought process doesn’t end there. There are people in my life who know what I suffer with… mostly family, some close friends. They have discovered what ails me and have stuck with me, broken as I am. But I don’t often go to them for help or council because I don’t want to burden those I love and care about. It’s my cross to bear, not theirs. I don’t feel I deserve this and they certainly don’t. I don’t want them to worry about me, because there is nothing they can do. I’m not sure there is anything to be gained by going to them. When I tell someone, they can do nothing to alleviate the suffering. If my physicians can’t help me, what hope is there that a friend can? All they can do is listen and be there. Their frustration becomes as tangible as my hurt. I can feel their sense of helplessness, my sense of isolation and the futility of all of it. I hate it. It makes me feel vulnerable and weak and angry and I fucking hate it. But it’s a part of me now. After so many years it ingrains itself. It’s in my thoughts, my feelings, my actions. I don’t want it to be, but it is a part of me. It’s a part of me which I hate with every fiber of the rest of me. So if I can avoid it, I don’t share. I can’t tell someone what my life is like, how I hurt and what I feel and then let it go. It’s not over. It’s never over. It’s chronic. It hurts. It hurts and I feel alone with my hurt.
I’m not sure if this is working. I don’t know if I’m getting my point across. Experience and feelings can be hard to put into words, especially when they are as amorphous as these. It wasn’t one event that made me feel this; it’s been years of it. It seems longer still. But my experience and feelings are all I can offer you. I hope it’s enough. I wonder if these pages contain something significant. It feels so meaningful to me, but I don’t know if the text conveys that. I know I lack objectivity here, so it’s hard to judge. And even worse, I can feel my focus slipping now. The words aren’t coming to me when I call. They are either being coy or I’m losing my touch. I think I’m an okay writer, not great, but sufficient. I write because it helps me sort my thoughts… it slows my mind and forces me to organize them. Words are so powerful like that. I remember reading something a few weeks ago. It was a journal article. The author was detailing the complications of a treatment for some disease and he mentioned chronic pain as a possible adverse outcome. He threw it into the conclusion; it wasn’t even mentioned in the body of the article. It was an offhand comment, as if it slipped out of his mind and onto the page by accident. He said the chronic pain was “not of any serious consequence.” I remember those words. I remember how they made me feel. He dismissed it. I felt angry. Literally, tears were in my eyes because I felt so angry. His words made me feel enraged. They can be so powerful. But as I think about it now, I don’t know if I had the right to be. He doesn’t know, he doesn’t understand. Maybe he can’t understand. Maybe you can’t. I don’t know, but that must be why I wrote this. I at least wanted to give you the chance. I hope it’s working. But then again, even if it is, I don’t know what you can do with the information I’ve given you.
I can see the sun coming up now. It’s not quite there, but the sky is starting to change. It’s sort of beautiful. The black is becoming bluer and the moon suddenly looks out of place against this new hue. I don’t really care to watch it rise. I know it will whether I watch it or not. Maybe I’ll go to sleep now. I like going to sleep. It’s the one time the pain always stops. That’s a good thought: the pain stops. It may be the most beautiful idea I can imagine right now. But then again, my imagination is quite tired as well. I’m growing weary of chasing words – I think I caught a few good ones. You’ll have to judge that for me. But don’t worry, I’ll judge it too. I wrote this for the both of us, remember. I’ll read this tomorrow or rather, today, and make some edits I’m sure. I think I’ll go to sleep now. I’m not sure if this has helped you to understand. But, I hope it has. Because I want you to. I want you to understand.
Copyright © 2012 Mentis
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