So I’ve wanted to write a blog for a long time, the problem has been deciding what that blog should be about. A generic “lifestyle” blog just seemed so… bleh; no one wants to read about my 5th Nando’s of the month, or my latest amazon delivery (a clothes drying rack, I’m not sure how much material I would get from that). What I did know for sure was that I absolutely, unequivocally, did not want to write a blog about Multiple Sclerosis. Or, more specifically, about living with Multiple Sclerosis.
I didn’t think MS deserved that much of my time and energy, on top of the time and energy it already takes from me, but I also didn’t have the confidence to believe that my experience was worthy enough of being shared. Then, towards the end of 2018, a sequence of, I suppose you could call them ‘events’, began to unfold, leading me to where I am now; sitting in a packed coffee shop, writing the first post for my MS and Disability related blog. Oh, life.
Following a pesky infection in the winter of ’18, my body never quite made it back to base. I was left with a slightly less mobile body than I’d had pre-infection, and this progression continued throughout 2019 until I was sitting in a nurse’s office being presented with two of NHS’ finest walking sticks to “try”. It was a couple of months before my 27th birthday, and almost ten years to the day since I was diagnosed (I like to keep things neat). Five months on I now use a stick almost every time I leave the house (though I have upgraded from the hospital’s own utility design). It was this evolution from “invisible” disability, to “visible” disability that first sowed the MS-blogging seed.
How I interacted with the world around me had changed, but to my naïve surprise, it was how the world now interacted with me that had the greater impact.
From strangers in the street I am no longer afforded a casual indifference, or an equal courtesy.
I am no longer an equal.
I can feel that in their pitying glances, in their patronising smiles, in their unashamed stares, in their antagonizing comments, in their sudden sense of entitlement to know why. Pre-stick I was never asked by a stranger for intimate details of my medical history, but now those questions come as standard. It’s not just strangers either, I’ve had some bizarre reactions from friends and family as well.
I started writing privately about disability as a means of processing this new way in which I am now perceived by society, but also as a means of processing, and unpicking, how I feel myself about the ways in which my body is changing.
Around the ten year “anniversary” I found myself feeling reflective, and wrote the story of my diagnosis for the MS Trust. How easily the words flowed, how readily the memories came flooding back, and how cathartic I found the writing process all told me that having MS is something I need to write about, for my own sake if nothing else.
Multiple Sclerosis is a part of me, and not just in the literal sense. It was woven into my identity as I grew from uncertain 16 year old into the adult I am today. It was with me through my most formative years, and will be with me until the end (finding a cure aside, obviously). I owe much of my strength, my persistence, my empathy, my patience, and my courage, to a life lived with MS. If writing about that doesn’t deserve my time and energy then I don’t know what does.
So here we are, decision made. A cheery blog about progressive illness. About a happy little life with MS. About the trials and tribulations of chronic pain, chronic fatigue, chronic insomnia, and a chronic need to pee, then some more chronic pain thrown in for good measure. A blog about finding joy in the little things. A blog about taking control. About losing control. About my experience as a disabled young person navigating the world around her. About finding new ways to move, and keep moving. About where to find the best walking sticks and what to say to “curious” strangers. A blog that is absolutely, unequivocally, not about “overcoming”, but about learning to live with. A blog about happiness and heartbreak.
Welcome to Evie Writes.