The Dark Terror

I’m sat playing d&d with dear, dear, friends. It’s a rough symptom day. I spent yesterday with other wonderful friends having dinner and talking late into the night, got to bed around 2am, and I knew that I’d made a purchase I didn’t have the spoons to afford.

And when we’re overspent on spoons, the bill always comes due.

There are a few main symptoms that let me know I’m paying down the debt. The first is numbness in my left hand, bad enough to mess with my ability to open crisp packets, to tie shoe laces, but not bad enough to substantially impede my typing. Just as well really, I have a blog. The second is fatigue, a wall of water that strikes from behind, oppressive and suffocating. The third is easily the worst of them…

The third is my vision.

I had optic neuritis during one of the big relapses I’ve experienced. Suddenly I noticed that looking down and to the left caused a bright flash in the eye and pain, like being hit with a really small bolt of lightning. My immune system had targeted the myelin surrounding my optic nerve, often a favoured target of MS relapses. The attack was damaging the nerve, causing inflammation, and that was causing additional damage to the surrounding tissues including my retina, which was thinning from the attack.

My particular iteration of MS is pretty good by all accounts. I mean comparatively speaking. I recover well from relapses, and seemingly I can even get long-term recovery from symptoms that would otherwise be intractable.

But my vision is the exception.

For most people with MS their vision recovers mostly or fully following optic neuritis. Mine does not. My own reading of the literature finds that in only 1% of attacks does someone lose their vision permanently in the affected eye. I lost a good deal of vision in that eye, losing most of the vision in a crescent that covers most of the central vision and the whole of the periphery above and to the right of that field. I lost the ability to process red, such that reds look a burnt yellow, and my central vision detail became poor enough that I could no longer read through that eye. People said that this was rare, that it would likely only ever affect one eye…

…then it happened in my other eye.

I really can’t describe the experience of the start of that attack, noticing on my walk just before my mobility was impeded that something wasn’t right with the vision in my good eye. I couldn’t put my finger on it but something was off. When I first noticed it my viscera turned to coal, hard and cold. My every reassurance became a sisyphean attempt to lift my spirits, with optimism and hope becoming sudden strangers.

I pleaded with the fates. I’ll be honest when my vision is affected there are tears, quite a lot of tears. My ears fill with the sound of scattered dice as fate once again turns to me to find themselves tempted.

And mercifully this time the dice turned up in my favour.

The damage to the optic nerve was minimal and while he retina had thinned significantly my vision was mostly unaffected.

There is now a small patch of vision that is a little unclear, a smudge in the upper right of my central vision, only revealed by heat and fatigue and when I’m paying a spoon debt and most of the time I don’t notice it. Today I can see it clearly.

When that little smudge presents itself I feel immediately threatened, as though it heralds the onset of a new attack.

I know that this isn’t an attack. I know this. A new attack would affect one eye and not the other, it would be a dramatic experience and one eye would suddenly get worse, not both eyes temporarily worsening just a little. It doesn't matter, I can’t convince that vigilant part of me to see this as anything other than an existential threat.

To everyone else I’m doing fine, laughing, chatting away. To me there’s a sudden internal panic that’s hard to contain.

So I wait, I hope, and I watch the skies for signs of weal and woe. Then at some point I’m there having fun and I realise that some time has passed without me noticing the signs of danger because they are no longer apparent.

I wish I knew how to refrain from panicking, to stay calm even when something like this happens. I guess I’m just somewhat traumatised by what has come before, the monster that finds me strikes with no warning and my only knowledge that it is here comes from the injuries I suddenly endure.

And when it is my eyes it strikes at, truly two of my most precious things, it is hard not to be frightened.

Maybe it just is that scary.

But we can't really discover who we are, what we're capable of, until the chips are down and the dice are rolling. Sure, I'm betting everything but I don't get to choose the stakes. Pour me a martini, ok maybe a lemonade, but make it dry, and hold the olive…

… I have a game to play.

‘I’m sorry madam this isn’t a bar, it’s a fire station, and you’ve been talking to a statue of the former fire chief for 20 minutes now’