When I was diagnosed with Multiple Sclerosis (MS), and went through the process of getting connected with the various formal assistance organisations available, I thought about things. A lot. I had a new label, I was officially now ‘disabled’. Or was I?
Many people with MS will say, ‘I have MS, MS doesn’t have me!’
(photo by Martin Christmas 2013)
It’s a way of refusing to bend to this tricksy and nasty disease. Sometimes you can’t do things you want to, sure, but other times you can. And it’s those other times, that make it difficult, in a paradoxical way.
Those times when you may barely feel you have MS. The times when you are in remission, no signs of a relapse, the times when you feel you could run a marathon, or dance the night away! These are grand times, and you relish the feeling. But they are also the times others will remember, and throw at you as ammunition, during the other times, the times when you feel you can barely make it from one room to another and the thought of dancing makes you feel ill.
Yes, I have MS, I have a disability, but somehow, I feel it’s important to label myself as having a disability, rather than saying I am disabled … I have the ability to do so many things that other ‘normal’ people can’t or won’t do. I am a published author, I regularly perform my poetry to an audience, I happily stand up and give talks to groups of people about my writing, my MS, and other things. I’ve often been told I am ‘brave’ or ‘inspirational’.
I think those two last labels are fine ones, even though accepting them makes me blush a little! I certainly don’t feel brave, for doing the things I love doing, although, thinking further on that, I realise some people have long held ambitions that they may never see come to fruition, and so they may see me as being brave for having the courage to put aside the expectations of others, to do what they truly want to do.
This is the wonderful thing I felt my diagnosis with MS, my label of ‘Disabled’, gave to me – it gave me the permission to do what my heart and mind told me I truly wanted and needed to do. I now had the permission to give my all to the creative writing that fed my soul, my sense of worth, that made me the person I was always meant to be.
The label that feels truest to me isn’t the label of being ‘disabled’ or even ‘having a disability’. The best label for me, the one that sits best with the ‘me’ I believe myself to be, is the label of ‘Poet and Writer’. That is me, wife, mother, poet and writer, Carolyn Cordon.
So who are you, what are the labels you are willing to accept? Do you think society labels people too readily? I’d love to read your thoughts on this …