This is the first time that I have gone onto a forum to say such things, but I feel so terribly isolated and alone right now. I have had MS diagnosed since 2011 and it has been a disease that has been pretty constant in my life ever since.
I have tried and tried to get on with my life since diagnosis - I have even written two books and run a company - but the creeping nature of this illness, the tiny things it takes away, has begun to wear into me, as if I was an ancient river bank whose sides are slowly collapsing under the never-ending flow of the stream.
What is our best response to this deeply personal and private tragedy that has entered our lives? We sit there and, perhaps for many, the best option has been that of silence - not to worry our families or our loved ones. Not, in the end, wanting to be seen as different or disabled. So we suck in our breath and get on with it, and no one out there but us knows how hard it is to get up in the morning, to walk to the shops, to answer nagging emails, to socialise. And then the memory lapses, the sudden tremors, the hidden humiliations in the bathroom… they mount and they mount until they break the will.
I was in the kitchen the other day and I found myself clutching the side of my face, my mouth open, screaming silently and wordlessly. Like the Munch painting. And I realised that this was my life now - a private hell and a painfully lonely one.
My MS is unusual. I have no brain lesions. Just one on my spine. My OCBs disappeared between my first lumbar puncture and the second. I have normal neurofilament levels. I can still walk 20,000 steps in a day, when the black dog isn’t there. But I feel that things are sliding and ending, and I don’t know who to turn to. I fear that if my illness is too spoken of, I will lose the love of those closest to me.
So I decided to come onto this forum to speak of the solitude of our condition. The terror of forgetting things. The endless pins and needles. The pain that creeps alongside us like a sinister shadow. The slow erosions of our identity, our sense of freedom. The foreshortenings that occur everywhere, at every turn.
So, please, scream with me in our silence. Tell me I am not alone in this moment of sadness. For I don’t need the advice of optimism - I don’t need to be told that everything will be alright (because how do you know). I need to be told that you are out there too, silent and sad, frightened and fragile. And perhaps there will be comfort in the knowing… knowing that we are walking our paths together alone, but joined in the deepest of human emotions: that of fear, of pain, of the slow sickness unto death.
This is my grief. Please do not diminish it, for it is your grief too.