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I am fretting over forgotten words, fearful of lost meaning and dwindling vocabulary. Would I write at all without my online crutch – checking and re-checking the words that have flown from me? Am I cheating? Or perhaps my altered brain leaves room for creativity to flow. There is no shame in forgetting, especially when there is so much joy in seeking. I’ve heard that learning a new language can bolster the neuro-pathways; perhaps playing with (and expanding) my own might have the same effect. An aspiring writer with a dwindling vocabulary and declining cognitive function? That is not shameful, that is the greatest act of hope and courage I can make.
It is not so much the physical decline that I am afraid of, but the cognitive. I want to read all of the books before I can no longer focus at all. I want to write everything while I am able to express and articulate. Words, not walking, that is what I want to keep.
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Autumn hangs in the air, stealing minutes from summer’s shortening evenings.
I think that once you realise life isn’t supposed to be easy, it takes an element of the fear away.
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I am lying in bed, following the pain around my body as it slips and slides along my nerves; left arm, left hand, right hand. A pulsating here, a shooting there – and always leaving an echo of itself in its wake. I am not in pain, I am above it – watching, observing. I have learned how to ride the waves, rather than try to swim against the tide.
I have been foggy for days, trapped inside a thick cloud, unable to pierce through. It is a hellish, vegetative state that could be used as a form of torture if it could be sucked out and bottled.
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Que sera sera, and all that jazz. Good things: hot coffee and warm socks and blue skies outside.
The tree outside my window is almost bare now. The last leaves linger, limp, clinging to the tips of gnarled, naked limbs.
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Sometimes my life feels stagnant and fading, but other times feels full of possibility – hopeful and abundant; the future an exciting unknown waiting to be explored. I need to be more patient with myself, I know that. There is time, and there is hope, and there is growth.
It is below freezing and I am trying to sleep in pyjamas but it is irritating and uncomfortable on altered sensations – better than waking up with hypothermia at 5am though.
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I just watched the Selma Blair documentary and I’m so glad I did. I feel as though I have been given permission to be ill, to be slow, to use aids unashamedly, to spend time in bed.
It is a bright, blue skied winter’s morning and I find myself once again bearing witness to world outside from beneath my duvet.
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The surprise of snow on a bright blue morning, hot coffee under fluffy blankets, conversations with [my husband]; these are the things that matter.
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There is a lot more to Tai Chi than you would think, and my left leg fills with more and more wet sand the longer I bear weight upon it.
Some lessons I am learning: that with slowing down (physically) comes the need to allow more time. It seems so obvious, but my mind hasn’t quite grasped that. Everything takes longer now; getting out of bed, showering, dressing, making food, eating food, walking…
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I am watching someone scale the climbing wall at the gym, she makes movement look so easy. It kind of makes me want to cry a little – how effortless it seems to her to exist in a body. I notice it in other people too, sometimes – the weightless, unencumbered ease of movement. A spritely step, a hop off a chair – the confidence that comes with the ability to trust in everything you ask your body to do.
I feel almost as though I have “served my time” now. I am waiting for MS to fuck off, and for my real life to begin.
I think I am in semi-denial. A not quite fully accepted state of “this is not really happening to me”. And I think that by blogging and posting about MS publicly on Instagram I have only served to strengthen this disconnect – as if by creating a ‘public persona’ of ‘Evie with MS’, I have subconsciously been separating myself from it even more. It becomes a story of my own creation, that I can control and manipulate and end. MS becomes a narrative. And perhaps I have needed that for a while, as a way to cope – watching it as a writer, rather than living it as a person. As a person who is allowed to find this hard.
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A lot of learning to live with MS is learning to reject much of what we’ve been taught in this society – there is a rebellion in that I can get behind.
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I wish to dig inside myself and carve it out. I wish to plunge numb fingers into the soft, grey tissue of my brain and pluck out the poison, as if weeding a garden. I wish to slowly and carefully stitch up the holes with silver thread, wrap my brain in blankets, and rest until the damage heals. Recovery. I wish to be left with healed scars and memories. That time I had MS.
It is the middle of the night and I am tired, so naturally all of my anxieties are coming out to play. My brain hates me, of this much I am certain.
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I have never hated having multiple sclerosis quite so much as I do at this moment. It is mere days before my wedding, and the pain in the left side of my body has exploded. My leg sings with it, a tuning fork on exposed nerve endings.
No one tells you how to live with a chronic illness – it is a life of fumbling along in the dark, figuring things out as you go. It is not a lived experience ever reflected in mainstream media; there is no guidance or way of knowing that you’re doing okay. But many of us are learning some of the most valuable life lessons of all. Perhaps we are worth listening to, including.
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I cannot simply curate a brain-damage free life for myself no matter how much I keep trying.
The tree outside my bedroom window is laden with new leaves; dripping and heavy in their abundance. Small clusters of white flowers adorn the tips, as if pearls on an emerald cloak.
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It is the grey-area that I think I find the most difficult: am I making too many adjustments, too soon, or not enough? Would I be more or less anxious if I made more? Am I pushing myself too hard, physically, or not enough?
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Today has involved micro-napping on the toilet and the delicious scent of wet soil in plant pots as they’re being watered – so all in all a mixed day.
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I am clinging to life and dragging myself through it. I need to stop striving to live beyond my limits. There is control and courage is choosing to do less.
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Fuck me, when did I become so self-pitying? It is a strange thing, living in a body that is slowly losing function, though not necessarily an altogether sad thing. It just is what it is.
Today was a nothing day, but also a kind of everything day – one of those in-between moments in life that play their vital (if often unrecognised) part in moving forwards. In being able to keep going.
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I’m Evie; a city-dwelling, nature-loving writer based in Scotland. Tea drinking, book reading, nap taking extraordinaire. I write about a happy life with multiple sclerosis, and mental wellbeing on my blog: evie-writes.com. Find me on Instagram (@evie.orr) and let’s chat.
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