The weight of knowing
Multiple Sclerosis targets the optic nerve with frustrating frequency. MS’s cousins Neuromyelitis Optica and Myelin Oligodendrocyte Glycoprotein Optic Neuritis, which are names only useful in answering the most esoteric pub quiz questions, also feature this same challenge, a favouring of the optic nerve as a target for attacks.
Attacking the optic nerves is a challenge because like the spinal cord you’ve only got one set and there’s no alternative route if the information superhighway they represent is damaged. The optic nerve is a particular challenge because while you have one for each eye, they converge into a single cluster of nerves at a junction known as the optic chiasm, which sounds like the site of a climactic battle in d&d. Damage before the chiasm affects just the one eye, damage after it can affect both.
I have had attacks three times before the optic chiasm, affecting both eyes separately. The worst of these was one of my most severe relapses, which we’ll call ‘the big one’. Honestly as I read my symptom diary they were all pretty big ones. My right eye was one of the first effects of this relapse. The vision became wholly unclear, with massive areas that suddenly looked like I was peering through frosted glass, with little areas of clarity about half the size of an outstretched thumbnail. This was paired with pain and flashing lights in the eye on movement, a telltale sign of inflammation in the optic nerve.
The eye never improved and I now can see clearly out of only my left eye.
Less than a year later I had a relapse, with pain in my left eye and a new patch of missing vision just above and to the right of my central vision. That little patch is still a little blurry.
It’s fair then to say that I am pretty terrified of relapses affecting my vision. Perfectly normal visual disturbances can fill me with a certain immediate dread, as though slenderman has jumped into the backseat of my car and asked me for a lift to the woods.
Then something happened which has only happened once before. A visual disturbance so dramatic that it broke my emotional state entirely, snapping it like a breadstick between the firm fingers of an impatient diner.
It happened while I was watching Traitors. Ironic, really, that the real traitor…
…
Was my brain.
I suddenly realised that I could not see people’s chins to look at them. The brain filled in the gap with whatever was around, often bare wall or a loosely skin-coloured surface, with the lower portion of the face gone entirely. I played around with my one good eye, realising quickly that a huge portion of the field of my vision below and to the left of centre was entirely missing. I had a hole in my vision where information should be.
Panic.
This is exactly how a relapse starts. No dramatic arrival, just the passive noticing that a skill you had but a moment prior suddenly isn’t there any more. Like when your car is stolen, you go to use it only to suddenly find it isn’t where you parked it. And you slowly realise it isn’t anywhere you look.
I go to the toilet. This is to where I retreat when things get scary. It’s not exactly comforting, but there’s a mirror, I can talk to myself, and I can slip into catastrophisation in some peace.
Gradually I realise that this patch is actually enormous and that if this is a relapse I won’t be able to drive, I’ll find it hard to read, to see people I’m talking to. No one has chins any more!! How will I know if someone is sporting a beard?! I love beards!!!
As I’m mourning the wrong thing in the bathroom I try to calm myself down. It’s far too early to panic. We don’t need to worry until this is the case for 24 hours, and even then short-term severity isn’t always indicative of long-term disability.
I return to the lounge to attempt, in total vein, to enjoy the Traitors while experiencing a panic attack. Then I notice the patch of missing vision is larger than before, much larger. It has started to affect my central vision. I lose the ability to see in detail entirely.
At this point the panic ends abruptly. The part of me that manages difficult situations draws her sword, snuffs the emotion like a candle, and we get to work. I run through the diagnostic possibilities, opening countless tabs in my mental browser and searching my brain for possible explanations. The worsening is relevant. It gives rise to some possibilities and makes others impossible. Importantly I realise that this is unlikely to be a relapse. Relapses tend to start really really bad and get slowly better; they can get worse but it tends to be over days and weeks, not minutes.
While I’m thinking, the vision loss expands further and takes on the shape of a crescent moon of missing and distorted vision.
I stop on one mental tab. I know what this is. The crescent moon shape thwarts most other possibilities. It’s indicative of only one diagnosis. This is a visual migraine. It is scary, and frustrating, and basically harmless. It should pass on its own within the hour.
I return to the bathroom to break down more fully. The relief that this isn’t a relapse rolls through me like morning rain, and with it goes the last of my resolve.
I begin to cry in earnest.
My vision returns slowly over the coming hour and I regain the ability to see clearly, at least through my one good eye. And I take some time to marvel at the psychological torture I just went through. That someone with MS, and vision loss, should experience a temporary and ultimately harmless effect that, to begin with, looks exactly like a relapse that could leave her blind, is a kind of personalised torment that makes me wonder which deity I must have royally pissed off. I really hope the fates got a kick out of this one. I hope it was worth it.
And I take some time to be grateful for that part of me who snuffs out the feeling when it isn’t useful, who draws her sword, who gets us to work when things are looking dicey.
And I am so thankful that this wasn’t a relapse, so relieved, that I feel the weight I carry, that all disabled folk, especially those with degenerative diseases carry. The weight of knowing that moment is coming one day, when what is happening really is the next relapse, the next milestone of progression on this journey to… a nameless dread. The weight of knowing that destination even if we don’t have words for it.
But I remind myself it is not today, not yet. And so I plan to go out with friends, to laugh and dance, and find intimacy and flirtation and life and remind myself that everything is going to be alright…
…even if just for a moment…