Sometimes our words just seem to not suffice to explain our pain. Sometimes the experience is too broad and too deep to describe adequately to others. And I think, in that way, language has its limits. There are some quotes I like that brush upon some aspects of pain and the nature of the pain experience.
I like this one because often we think about what we Gain from pain. What we learn. What character traits we develop. Our resilience and perseverance. And we do gain a lot of things as we cope with this chronic signal. Sometimes. Sometimes, though, it just hurts and we are just trying to ride the waves of that brutal storm and get through. That is all.
Now this one, to me, does speak of our endurance and our perseverance. That we may suffer, mentally, emotionally, and physically… but we are still upright and keeping on keeping on, man. We endure. We survive.
I have always loved this snippet. Hope is what drags us into the future… taking on new treatments and trying new medications and… just… trying. Maybe I am not Half hope… but I am Some hope. I have been hopeless before so I know how fundamental just a wee dose of hope is. But, yeah, the rest of me is just a big old ball of pain-ness.
This isn’t a quote so much as one of my favourite poems. Think of that line: There is a pain-so utter- It swallows substance up. I feel that line in my bones. I have felt that. I have been consumed by that.
This is a quote that reminds me while I am locked in this endless flux and twists of chronic pain… that is always new in location, sensation, and intensity… always shifting and changing… it is something that becomes mundane to those around us. Oh, yeah, you have chronic pain. Still have chronic pain? Weird. Not better yet? How odd. But you did a Thing yesterday. And you Look better. And it sort of just becomes this thing they know as background noise about you. Not this constant intense experience that needs to be endured and coped with.
Now this one is basically something fundamental to human nature. We are meaning making machines. And we want to understand what this Pain Means. And since there is no meaning, no one to blame… we can sometimes blame ourselves. Or sometimes we make meaning with a pain story… that can be skewed by the pain or it can be more realistic or even optimistic. All depending on how we shape the experience in our head. And it changes over time. Depending on how we are coping during that stage of our life. But we need that story… we can’t help but make it.
The thing we sometimes forget about pain is that it is an experience. It is not a thing in the body so much as an experience in the brain we react to emotionally and mentally. And like I said about, one we interpret and create meaning about. That means pain is far beyond the Pain Signal the brain sends out (a broken signal with chronic pain)… it is also Suffering… the emotional and mental reaction to pain. Which is completely normal but with chronic pain, is Also on repeat and that can cause a lot of problems and negative thoughts. From my life with pain I have learned I can do very little about the pain signal (medications do so very little as do treatments)… I have more control over my suffering level, as that seems to be an area I can tweak a bit myself with a lot of effort. But pain, not so much.
This one reminds me of certain types of pain, like fibromyalgia, that shifts around in different intensities… flares there, then over there, but is everywhere to a degree.
The thing people never seem to understand about pain is that pain itself comes with symptoms. If they had a broken leg and I gave them some calculus to solve… I think they might find it tricky. Just saying. Concentration and focus issues are some of those symptoms. Trying to cope with the pain takes up 80% of our brain, sometimes I think… which leaves little left for everything else really.
I know a lot of quotes are completely out of context and this one is (great book The Magicians– made the Magicians TV series from it). But I like this one. It makes me think of chronic pain. We have learned to break the world that has tried to break us. A world not too friendly to chronic pain either. That doesn’t want us to ‘fit into’ society well. And tries to break us when we try to force ourselves to fit into it. But we don’t break.
I could put a whole lot more on this list. But these ones all say a little something about pain. About the experience of chronic pain. And about enduring chronic pain. To me.
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Do you have pain? Have you had pain so long that you don’t even remember what not pain feels like? I mean is that even a thing? Not feeling pain? Pain level 0? We at the pain manual are not even sure anymore. And this is the Manual for you, my friend. We will go over such topics as how to know you are actually in pain to what not to do on Good Pain days.
The manual was lost to us for years but was recently recovered by me. Unfortunately, only pages of it were and can be released. This is a hypothetical quote from the potentially really real author of the really, real manual: “People like me with illness just need to know what to do. We flounder with random advice. I was told yesterday to drain the black bile from my body! Black bile! I need my black bile to live! Someone needs to write something to guide us in the right direction. So we had step by step instructions on how to do this coping business.” To which the reported response was, “Suck it up, buttercup.”The Chronic Pain Manual: The really, real manual on pain