I’m not the resolution sort and yet January seems to have brought with it a desire to drink more water and less wine; to get down to the part of my DFA (Doctor of Fine Arts) project that frightens me most and to be more faithful to this place (it being over four years since my last post). I don’t really want to be held to any of these – except perhaps the one about getting down to the scary bit of the doctorate – but I plan to have a go at each.
My first reflection of 2019 is that I think I should perhaps question the name of this virtual writing place/space: sunshinescot.com. It may have been apt when I was a Scottish person living in Florida but only the Scot part holds true on a snowy afternoon in Wisconsin. It has to be said, however, that one person’s minus-six-celsius-icebox is a non-human animal’s sunny-sunny-day; a large flat coated retriever called Hamish is currently slapping his paw on the kitchen door in the hope that I’ll let him out to play, again. I have tried to remind him that the white, fluffy stuff he loves so much will likely continue to thickly carpet the garden until at least the end of April. He is, however, unappeased. His whimpering has now grown to a bark, which is my cue to stop typing and don hat, scarf, gloves and boots. Again.
When I was first diagnosed, I found that writing poetry (in the loosest sense of the word) was a useful way to process some of the strange stuff that happens when you have a disease munching on your brain and spine. After a couple of years I stopped as the stories I wanted to tell began forming themselves in prose instead.
National Poetry Day got me thinking though and I returned to a poem that wrestles with a thought I continue to wrestle with: what happens in that infinitesimal moment when relapse turns to remission?
For those of us with Relapsing Remitting MS, there must be a split second – a moment in time – when a shift happens, a switch activates, and our bodies begin, slowly, to repair; that moment when our former ‘healthy self’ begins to return, to reassert.
A while back, when I was tussling with this thought, the following words started tumbling around in my head.
This is day 32 of ‘A Letter A Day’. The last day. It therefore seems fitting that I end on the first letter I received (although, when I chose to post the letters alphabetically I hadn’t joined those dots, so it’s merely serendipity). This letter is anonymous and if you click on the link below, I hope you’ll agree that it tells an important story, beautifully.
Since her diagnosis with MS sixteen years ago, Sue has become actively involved with the MS Society’s Research Network, working with the media and representing patients’ views on progress in MS research. Please click on the link below to read her powerful diagnosis story.
With only three days left of ‘A Letter A Day’, it’s my privilege to post Steve’s letter. He was diagnosed with MS nine years after his wife, Caroline, had received the same diagnosis. Please click on the link below to read his diagnosis story.
It’s the end of week four and today I’m posting a letter from Sandy. In it, he writes, ‘I was 32 and thought my world was over. It wasn’t; it was simply a new beginning.’ Please click on the link below to read the rest of his diagnosis story.
Today I’m posting a letter from Ruth. In it, she writes, ‘I had my first episode aged 21, during my third year at University – a period of double vision which was terrifying and for a long time no one could tell me what had caused it.’ Please click on the link below to read the rest of her diagnosis story.
Today I have the privilege of posting Rebecca’s letter. Her powerful letter ends with the following thought: ‘It isn’t a life I would have chosen for myself or for anyone else, but now I’m on this journey, I’ll do all I can to embrace it.’ Please click on the link below to read her story.