Other people’s words about … chronic pain

I told [my parents] how that afternoon I had actually gone and seen another psychologist [for help with my chronic migraine]. I was just feeling so low and so down, and a friend had recommended her, and she could squeeze me in. I told her the pain would come and the pain would go, and that I couldn’t control it, that some days I would be fine, more than fine, ecstatic, but that other days the pain would return and I would slide into a depression so deep I could not see my way out. I told her I felt like a rat in an experiment, a rat made to drink water — sometimes the water was normal but other times the water shocked with an electricity so violent that I would swear never to drink it again, but then I would see everyone else drinks water and I would wonder why I couldn’t do that too. I told her I just wanted to drink the water. Sometimes I could, but mostly I couldn’t and I never knew when. I told her I just wanted to know why. It had been years since I’d had the initial migraine, but even now, right then, the pain had returned and I couldn’t read or write or — I told her I was sick of being an experiment, that I just wanted answers, someone to help. Then I asked her if she could help. I asked if she’d ever heard of anything like this before and then I told her please. I said, Please, I would just really appreciate it if you could help, and she just smiled and told me she’d seen it all before. Then she got out a piece of paper and a pen and told me to rewrite negative self-thoughts as positive self-thoughts. I asked her what she meant. She said, Well, you could rewrite ‘I am worthless’ as ‘I am special’; ‘I am alone’ as ‘I am loved’; ‘I am useless’ as ‘I am capable’. And then she sat back and pushed the pen and paper towards me and told me to try. I told Mum and Dad I just got up and left, then — because I knew she was just the same as everyone else — full of bullshit just like the whole world was full of bullshit. I told them it was like I was eight years old, and everyone was playing pretend.

from ‘Train Lord‘
by Oliver Mol

There was a period in my life some years ago when a headache settled over me which, despite all the cures and treatments I tried in response to it (both conventional and alternative) would not fade away. Unlike the chronic headache that Oliver Mol describes seeking treatment for in the passage above, my headache wasn’t a migraine: the pain I experienced was of a milder kind, what doctors call a tension headache. This meant that, unlike Mol, I could still function. That is to say, I could still present to the world an image of myself functioning. Unlike him, I could still read and write; I could still watch television and use computers; I could still get myself to work.

Still, the pain during that period was omnipresent. It varied in intensity: sometimes it was faint, just a light tingling sensation at the edge of my eyelids or (oddly) inside my nose; sometimes it was strong and persistent, as though someone had lodged a heavy, blunt object (a hammer? a mallet?) into the top of my head and was pressing this object — pressing and pressing it — down into my skull. Sometimes the headache made me feel dizzy and sick, and this, because of my phobia about vomiting, triggered bouts of anxiety that weakened my ability to cope with the pain. On days like that, I felt desperate. I made a mask of my face in social contexts; I disappeared from my desk at work to cry behind the closed door of a toilet cubicle; I made excuses and went home early from gatherings (or didn’t go to them at all). I felt myself, or the person I thought of as myself, slowly disintegrating.

I hadn’t known until then how much my sense of myself as a social creature, and as a socially worthy creature, was predicated on an assumption of my good health. I’ve since learned that this is an experience common to people experiencing chronic pain or illness, but I didn’t know that then.

Aldinga Scrub, summer flooding, January 2023.

Mol’s migraine lasted ten months initially (although later it returned for another few months). My headache faded away around the two-year mark. I still don’t know why, really — whether the cure was due to something I did, or to one of the treatments I tried, or simply to plain luck. Sometimes it returns, settling over me for a day, or a few days, or a week, or a few weeks — but eventually it leaves again. And because of this, because the pattern has changed, because I know now, or at least allow myself to assume, that the pain is only temporary, I have learned simply to wait it out when it visits. To let it run its course.

And yet. That word: temporary. And then I told her please, Mol writes, and that’s what it feels like, even now, when I’m in the midst of a long headache: a prayer to someone, anyone, to make sure that the pain is only temporary, that it won’t take over again the way it did for those two years. Because once you’ve felt it, you never forget it: the way pain changes you, the way it writes itself on you, the way it renders you powerless. The way it robs you of yourself.

This, I think, is what Mol’s psychologist failed to see. Perhaps the worst thing, when you are experiencing chronic pain or illness, is the sense of betrayal that accompanies your pain. You feel, first, as though your body has betrayed you, this body you have been lucky enough never really to have thought about before, which until now has performed for you mostly without pain or grievance; and then, second, as though the people around you — the ‘experts’ you have consulted — have betrayed you, too, with their so-called treatments and cures, with the promises they make you, with the money they take from you, all to no end; and then, third, as though the world itself has betrayed you, in its refusal to operate in a way that is manageable or meaningful for you in your pain.

If, in the end, you are lucky enough to get relief from your pain, what you never quite forget is that when you were in pain, you changed. You no longer knew yourself. You became a person who said, Please.

Lately I’ve been reading …

• • The truth is that writing a novel is often a long, crude, insecure business with a dubious outcome. You can spend years and years not sure of what you’re doing, writing something that in the end may not be great, and that perhaps no one will read. No one may read it even if it is great: Suzanne Berne, in a wonderful piece on why novelists write novels and why readers read them. As both a writer and a reader, I find what she has to say here illuminating and encouraging.

   

  • None of the trappings of literary success — which can be quick, and flashy, and very exciting — can substitute for the (singular, difficult, slow, and at times unbearable) work of writing: On a related theme, Carmen Maria Machado on writing for the sake of writing, rather than for the sake of success.

   

  • Bio-based plastics are problematic for a variety of reasons: Matt Simon on the problem of replacing the fossil fuel industry with the bioplastics industry — and why, in the end, instead of replacing one product with another, we need to stop producing altogether.

   

  • I felt stuck and couldn’t shake off the black, crushing feeling: Eric Kim on depression, solitude, beautiful boys and lobster tails.