I was determined to make it a year without a relapse of Neuromyelitis Optica. I’m not convinced at all that determination has anything to do with when my spinal cord will become inflamed, yet still, as we entered 2015 I kept checking the calendar and mentally noting the number of days I had left ‘to make it’. I attached a lot of significance to a twelve month period.
But that’s what we do isn’t it? We all dance and get drunk to welcome in the New Year, full of hope and expectation for the following 365 days. We stick candles in cakes and congratulate each other on being alive for another year. We celebrate another successful year with our spouse, in which we’ve managed not to cheat or kill eachother. We watch season change, buy chocolate eggs, bake ourselves in the 3 days of annual summer sun, count down to Christmas and bring the year to a nice neat close once we’ve got to the end of that twelve month calendar. And we mentally mark memorable dates – holidays, the day we met, the day they died, the day I was rushed into hospital because I was rapidly becoming paralysed.
I just wanted to sail past that day on the calendar, quietly raise a glass to making it through, leaving that event where it should be – 7th March 2014 – merely acknowledging it with a contented nod as it’s anniversary passed each year. But I relapsed in February.
NMO is predominantly a relapsing condition. There is a ‘monophasic’ type, meaning the affected person will only ever have one attack, even without treatment. I was told not to get my hopes up about this being the case for me as it is incredibly rare and by looking at test results and so forth I was a bad candidate for that prime position. When I found this out I googled, I found facebook groups, I tried to decipher scientific research, and I tried to pluck from the air of confusion a time period – how long I thought it would be until my first relapse. Why? Because I was trying to create some certainty for myself, to lull myself into a false sense of security at a time when I felt I had none. Because 5 years and 6 months (the time I chose for myself) didn’t seem too bad. My partner would have graduated, we’d be married, we’d have travelled. I could cope with that. Realistically there is no way of predicting when a relapse will happen – it could be months, weeks, years. I think the longest I’ve read about is eleven years between attacks, not bad going.
So when at 11 and a half months my leg started giving way every time I stood up from the sofa at my mum’s house, I chose to sit in the conservatory and smoke and laugh like an idiot. I do that when shit things happen. If I get bad news a maniacal grim will stretch across my face and as I stifle a laugh I can only think “Helen, why the fuck are you smiling?” which makes me smile even more. I did the same when my neurologist confirmed the relapse. Idiot grin. Inside I felt winded. Wounded. I couldn’t even make it a year.
Since then I’ve cycled through questions, such as
-Have I really had a relapse? It could all be in my head,
-Is my leg really that bad?
-What did I do wrong for this to happen? Too much? Too little?
-Why couldn’t I make it a year?
That magic twelve-month marker again, as though relapsing at a year and one day would feel infinitely better than doing so at eleven and a half months.
Add to this mix the medication used for relapses – high dose steroids – and my mood absolutely hit the pits. I already have a predisposition to being a miserable git, and steroids have a wonderful way of contorting my mind and pushing it into all of the darkest, dank corners of self-loathing, self-doubt, and deep unrelenting sadness. Just what you need when you should be putting your all into recovery. It’s as though someone came and draped a wet carpet over my head during the night and, weak legged and weak spirited, I had no choice but to drag the thing around. A heavy reminder of how shit I am – shit at not having relapses, shit at recovery, shit at being motivated, shit at life.
Last time, my first attack, I was high on shock. I was one of those ‘inspirational’ people, battling hard and never ceasing to smile. People told me I encouraged them, inspired them, gave them hope. If they could see me now, stuffing cake into my face to quash the steroid induced sweet cravings, all the while loathing myself for giving in, predicting my future with an uncontrollable gut and a limp, lackadaisically going through the motions of my physio exercises, staring at the beautiful snow outside wishing it would fuck off so I could go for a walk, laying on the sofa crying, refusing to take a much needed nap because ‘I will not sleep my life away – not so inspirational now, eh?
As I’ve reduced the steroids someone has kindly replaced the wet carpet with, say, a damp bath towel. And now I feel like an idiot for plummeting into the depths of depression for a week over a relatively minor relapse involving a slightly weakened leg, and for being so transfixed by ‘making it’ to a year. I’m still down. But I’m treading water (metaphorically of course).
Yesterday it was the 7th March 2015, one year on. I stuck two fingers up at the calendar, remembering that time, dates, calendars – they are all man made, socially constructed. They hold no significance, and even if they did my body couldn’t possibly understand. We live in a society obsessed with time measurement, but NMO really doesn’t give a shit about days, weeks, months. The sun will continue to rise and set as it always does, and after one of those sunrises NMO will decide to rear it’s ugly head again. I will relapse when I relapse. I will recover when I recover.