My Awkward In-Pain Self
If you want to understand a person with a chronic condition, you have to step outside the comfort zone of rapid small-talk and the preoccupations of a pain-free life.
“What is a reasonable amount of pain to be in?”
For the last year I’ve been in pain. A condition I had when I was younger and thought was gone returned. I find myself again hostage to the time and labor of pain management.
“What is a reasonable amount of pain to be in?” I’ve been asking myself this question constantly in the past year. I ask myself this question as I try to complete the task of writing this story – chronic pain means always multitasking. I split my attention between what I’m doing and the pain that demands it. I concentrate and try to allow for the slowness you must abide by when you are forced to do everything with an undesired companion. This slowness requires a vigilance to pain, a vigilance that, while well intentioned may actually increase pain. Noticing the shallowing of breath. The trying to let go, to allow things to rest, only to have spasms that bring me back to the beginning of the cycle of finding the appropriate level of holding, of tone, of letting go in the unstable fluctuating state of it. The question is asking: is there a new baseline, a level of pain I could accept if it just didn’t exceed what I’ve deemed “reasonable.”
Managing a chronic condition is a process of getting closely acquainted with failure. There’s no cure for what I have and the medical treatment that does exist is often not very effective, or has side effects that may alleviate some pain but are shitty in other ways. Sometimes I choose continued pain because at least pain is familiar.
I do everything I can. I try everything the internet tells me, but nothing helps consistently. I’ve been desperately trying to avoid taking a medication that might make my hair fall out. It’s crazy how many people say things like, “That’s not so bad” or “wouldn't it be better than being in pain?” As if somehow not wanting my hair to fall out is simply a vanity and not an attempt to stave off my total conversion to identifying with and being identified by illness. My diet is so restricted I often just fear mealtimes and sometimes it seems like the most sensible option is to not eat at all. The cost of trying to manage my condition “naturally” is several hundred dollars a month. At the moment I have no income.
This pill that I'm avoiding whose potential side effects are terrifying is free through Medicaid (which I have nightmares about losing). Having medicaid requires a careful balancing of necessary precarity. In order to qualify you can’t make more than $16,100 a year, so in addition to making enough money to live, I have to be careful not to go over this number. I manage the shit out of almost every aspect of my life. My fear of starting this medication is that, like the many psychiatric medications I take, once I start I’ll never get off it, that I’ll become dependent on it and the modicum of freedom it gives me via an increased normalcy. Possessing a body that responds slightly less to the world as if every second was a complete emergency.
Surface of skin feels exposed as if turned inside out, red, not meant to be touched, like the sensation of touching a weakened electric fence which covers the length of your skin. Clothing and nakedness become simultaneously impossible.
It came back shortly after I got sober (for the second time) as I was just beginning to feel sane again following the worst period of depression I’ve ever experienced. I’m incredibly (maybe idiotically) pragmatic, so during this period I made the decision to go as close to death as I could without actually killing myself, unless I could find an ethical form of suicide. Maybe I set up this impossible puzzle to keep myself alive, that even if I could not get behind life, I could still get behind a certain ethical integrity. It took a year, a shitload of therapy and meds, getting sober and the endless patience and care of a really close friend to come out of it.
I have this theory that when I started feeling sane again, my body, in its inability to orient itself to the absence of some kind of pain, the absence of something closer to death, started trying to right itself by creating something it could recognize. That in order to know that I exist, for my body to have substance, there necessarily has to be a condition of pain or misery to anchor it. So maybe chronic is not the condition of pain itself, but the orientation of my mind to a state of pain, where it can understand itself and the world. At some point in my development I made this commitment to “reality,” to seeing the world and how it operates, which created a suspicion or rejection of anything that is not also pain. I think it’s not incorrect, but in the complete bodily faith I put into it I have created so much work for myself.
When pain is close, lying in wait, prepared for weakness, it returns, floods. Maybe pain wants to be free to overtake its host, to extinguish her. Pain is confused about its own power or about how small, transparent, and absent it can make us without killing us.
What is a reasonable amount of pain to be in, if it is unremitting?
When you have a chronic condition, simple things take twice as long. All the ways you’ve been conditioned to understand time no longer apply. Time is for healthy people. Your labor is put in the service of managing this internal thing that has nothing to do with self-improvement or even being healthy, but has to do with fear for the next hour, day, week. Your job becomes to appease this thing whose vigilance to your misery is unrelenting, a vigilance you try to match with an offensive kind of care. But you fail all the time. Nothing seems more pointless than this labor.
Color is muted, scope of vision becomes small. Unable to discern the periphery, the air seems foggy, sounds louder and more jarring, distances are longer. Carrying your body from one place to another feels unimaginable.
I’m not great at small talk or the social more generally, which maybe has more to do with the other chronic shit I deal with – depression, social anxiety, addiction loop. But when people ask what I’ve been up to or something to the effect of “what do you do with yourself,” I can’t help but hear the question as, How do you make money, how do you generate social capital, and is there anything I can access through you? More abstractly, the urgency people have to know something about you quickly feels like an urgency to quickly assess the amount of time they want to devote to your presence. But I find myself saying, “I honestly have no idea,” which is true, because I have no answer that is appropriate to these questions. You’re supposed to say, “I’ve been working like crazy,” or, “I’ve been working on this painting/piece of writing/organizing thing,” or whatever clarifies an identity the other can orient themselves to. But when what you do with most of your time is to manage, sublimate, or attempt to “treat” a chronic condition, you are not producing a legible product, except maybe your unremarkable but unshattered self, and so it is difficult to make yourself legible to others.
When I am working, I do a kind of pain management that is about surviving the day, consenting to more pain while urgently trying to minimize it. And alongside pain, I experience weird, carefully excised small pleasures that come with the masochism of being stuck in this monster, “work,” where pain makes sense. At work I have to ignore my body and what it’s asking of me, I have to accept the pain being worse for the duration of the job. My work comes at temporary intervals, so it’s always “just one more week” before I can stop and do damage control for what I’ve done to my body. The formula seems to be, I can have less pain and no money, but eventually I will run out and have pain and no money, or I can have more extreme, but urgently managed and sublimated pain and make enough money to scrape by during the sometimes long breaks between jobs when I can try to recuperate the progress I lost by working.
Lately my pain has been really bad at night. I’ve been having panic attacks, I cry until I’m exhausted. I’m lucky to have a partner who refuses to leave me alone at these times. Maybe the body economizes, giving the exact amount of misery one can take without breaking, because I couldn’t do this alone right now. It’s like the condition waited until it knew I could be held. It waited until I was in a place with people who seem impossibly decent, who understand that a break from this burning ship of a world requires that we know how to care for each other. Here I can be my awkward in-pain self and, while I may feel like my organs don’t fit inside my body, I no longer experience pain as requiring my isolation.
Pain brings us to an awareness of being bodied, irreducibly, of being brought inextricably into contact with our finiteness. The awareness of mortality does not have to do with death. Rather, unabated pain with no known end brings us to an awareness of time, of the breaking point of an individual physicality. And so, the mortality in question is the unknown of an ultimate duration. Considering this pain is to question our agency with regard to our own death or end of pain. Of what comes from being irreversibly changed by pain.
I want to say something about the bodies of people who live with chronic conditions, how tough they are, because they’re always already fighting, constantly doing more than feels possible, they are doing whatever while also handling the additional task of being in pain. I want to say something about how this has been done to us, that maybe we’ve been poisoned, but that our illness doesn’t come from weakness. That the world needs us for what's to come, because we know something about being destroyed by the world. But by the time I get to this part, where we are triumphant, I am exhausted again and trying to remember the level of pain I decided was ok with me today. So, I’ll just say that when you are speaking to a person with a chronic condition, know that their slowness, their evasiveness, their anxiety exist because they live in a body that feels incommensurable, and if you want to know about the deep strength of that you have to have the courage to be in that slowness, that anxiety, that temporality that doesn’t run smoothly alongside all the things we think are supposed to happen in life. A temporality that doesn't make sense in world we have, but might be necessary in the one we want.