Neurology, again
I wrote this about 11am, an hour into an attack of whatever condition I am living with, after having one all day, every day, since Tuesday. It is now 4pm and I am still having that attack. I managed to see two friends today, but the attack has not stopped. I was hoping I’d get home and decide not to post it. Fuck it, I’m posting it anyway. This is one of the worst in many weeks. I don’t want to go to hospital. I might have to.
We’re halfway through 2026 and I’m cancelling every plan I have, because of a neurological condition the doctors won’t help me with. I’ve lived with this for six years without any help. The trip I’d been looking forward to in May — a long-awaited actual holiday, to Toronto — cancelled. A possible week in Bucharest, cancelled. A poetry reading I was due to do in Manchester in a fortnight, cancelled. I poetry reading I wanted to attend, yesterday, only 15 mins walk away: I couldn’t make it.
It’s hard to get across the nature and depth of the hell these attacks put me into. They are like a combination of a panic attack, low blood sugar, and Tourette’s syndrome, all firing off each other. The motor tics are consistent; the verbal tics tend to happen only when they’re really bad. This last week, they have been really, really bad. I quite like the heat, if I’m honest, but my nervous system does not, and it has been torturing me. I don’t use words like torture casually. Late morning til evening, every day. This is not life.
They haven’t crushed my spirit, these things. You do not wrench yourself sober after years of alcoholism and then hit 620 days of sobriety (yesterday) without a powerful resolve to enjoy life, and to enjoy it well. But they’re doing their fucking best. In the last few days I have hit such levels of despair that I have been trying to bargain with the suffering; I’ve found myself committing to ripping up the very few remaining hopes I have left. I’m giving up on ever moving to Brighton, I said to myself, and to several friends. Why? Because the only livable summers for me, unless I get help, are going to be far, far north. I sincerely believe that unless I get adequate help for this condition, to deliberately move somewhere even hotter in the summer would be to put my life at risk.
It occurred to me yesterday that one reason I’m so happy when I’m back in Brighton — which I never wanted to leave — is that as soon as I set foot there, I emerge from survival mode. I can go for long walks by the sea, up Whitehawk Hill, onto the Downs; I can wander round town, which means wandering round memories. Every few yards in Brighton is a memory, a social memory. In Nottingham, the only memories I have as I walk around are memories of thoughts I had in a particular place. This is the stark and simple difference between having a life somewhere and being isolated for half a decade: all my memories in Brighton have people in them. I was in Brighton a fortnight ago and for whatever reason, that trip unlocked the grief more than it ever has before. I cried so much.
In Nottingham, I’m in survival mode. Still. Always. Five and a half years now. This is a combination of my situation and my health. These attacks keep me locked into survival mode because for hours and hours every single day all I am doing is trying to exist. Nothing else can happen. Cruelly enough, if I weren’t already getting it, they wouldn’t make me eligible for PIP: I can do the laundry, the dishes, hell I can even play piano. Something about focus stops the tics, there’s no loss of dexterity. (I’m having one now.) But it’s still hell. It doesn’t “take my mind off it”, because it’s not just my mind, it’s my entire body.
Emotionally life stops. You cannot rest. All you can do is concentrate on something physical, for a few moments, and suffer through it, or shake and tic uncontrollably, pacing the flat endlessly, and/or try things to stop the suffering. You try anything. It does not work, by the way. Nothing ever helps. At best I can slightly dampen the intensity if I’m lucky.
But I cannot give up on Brighton. The rent is fucking insane, but I only had one other life goal — and moving to the USA now, even if I weren’t a chronically ill poor person, is a dead dream. About once a week I search online about the paths for immigrating to Canada, in the hope I will read something, just something, which makes it sound like one day it might work for me. It won’t. So none of the very few things — really the only thing — I’ve wanted for my entire life is a possibility. I’ve got nothing on the horizon. Nothing. And that’s a bleak place to be when you’re about to hit forty, especially when you are wracked by neurological attacks so bad you wonder, almost every day, whether you will end up counted among the suicides.
So the only sub-goal I’ve been clinging to is: get back to Brighton, somehow. That hope, I won’t call it a life goal, just a concessionary hope, was all I had left. There is no point in contriving new goals while I am so incapacitated by an illness the doctor has no interest in helping me with.
(“No, there’s no medication for this. On you go. Here’s a printed sheet about Chronic Fatigue Syndrome, which you MIGHT have.” That was it, after hundreds on private neurologists and hammering on the NHS’s door over and over and over again. You have FND, you might have CFS, you probably have ADHD. Any help for the FND? No.)
I didn’t want to type it “out loud” but I will: “… while I am so incapacitated by an illness which may affect me for the rest of my life.” Some fucking life that will be. The fact that I’m doing well outside of the attacks has no relevance when sometimes the attacks get so bad that I’ve taken myself to A&E because I feel I am not safe. This has happened three or four times, and the only reason I didn’t do it this week is because I know the hospital is even hotter.
On the one hand, I know Brighton can work for me because it worked for me before, and because when I go back there now, it’s like coming alive again. Those last five words don’t come close to articulating how total the transformation is. In the last 3 days of my last visit (I’d stopped crying at that point) I walked 48,000 steps. On the other hand, I know Brighton can’t work for me because realistically (and not just because of my neurological condition) I have to live alone, and there is absolutely no way — I mean that, there is absolutely no way — to get from where I am now to an income which opens the possibility of living alone in Brighton. So I have nothing left. There is nowhere for me to go, nothing for me to do. I’m stuck. I have been stuck since I was forced to leave Brighton. I am stuck. Because of how being stuck works, the only possible future tense to follow is: I will stay stuck.
People try to be kind about this, the way people try to be kind about living with a chronic illness, but the attempt to be kind too often involves a refusal to hear the truth, an insistence that you are being defeatist — or the suggestion of lines of attack so basic and obvious that you begin to wonder whether they somehow think you have only been living with this condition, this circumstance, for twenty minutes. As if the million traps I’m in and the relentless suffering of the post-COVID years of my life are something I only just found out about.
This isn’t what anyone signed up to this Substack for. But sometimes this is what chronic illness does to you. My spirit isn’t crushed, and most of the time I still somehow manage to be happy and silly. But not always, not today. This is a bulletin from suffering, nothing more. I honestly feel, right now, that I am nailed to this spot for the rest of my life. Given how powerfully these attacks are triggered by fear — among many, many other things; they’re a mystery — you can imagine the spiralling.
However I describe the place I’m in now, whatever I call it or name it: if there is no help, I’m never getting out. That’s an accurate description of so many of the traps I (and you, if you’re poor) are in. But the final and most intimate and most inescapable trap is a condition affecting your body, and that’s where I’m writing from now. It is a living hell. I need help. I NEED HELP. This is hell. I don’t know how to my my doctor hear that. This is hell. I NEED HELP. There isn’t any.