Monday, 29 April 2013

How MS Fatigue Affects My Writing - A Short Essay


What Keeps Me From Writing?


My deficient brain is what most often keeps me from writing.

In the past, it was all of the usual excuses: I was studying, and then I was working, then I had a family and a child, then I was building a career, etc, etc, ad nauseam.

These days, my life is very different. I still have a family to care for, but I’m not working, nor building a career. Time is no longer an issue. I have plenty of time for anything I choose, so I indulge myself in something I always thought would come later in my life: writing.

However, the same reason that keeps me from working or from following my career will often keep me from writing too. There is something going on inside my brain that affects my thinking, and it’s a truism that if your thinking is affected, your writing is affected also.

Multiple sclerosis (the disease with which I have been diagnosed) is so called because, literally, multiple scleroses form in the brain and spinal column. Sclerotic, an adjective of the same root, means, among other things, hardened, stony in texture, unmoving, unchanging, rigid.

It is trying to think through my sclerotic synapses that most often prevents me from writing. My mind constantly has to take the long way round, pushing through foam and fog and dense clouds of doubt and uncertainty. Where once there was clarity and fluency, there is sluggishness and torpor; where once there were bright, vivid memories, there are black voids of nothingness, empty holes in my mind that frighten and disturb me.

It’s not constant. For some reason, sometimes my brain seems able to return to a semblance of its former self, and during these fleeting hours I dash out words with a juvenile enthusiasm, gaily plucking adjectives and adverbs and verbs and nouns from the darkest recesses of my memory and ramming them together in the most ludicrous and haphazard fashion.

But it always returns. It will again ache inside my head as I attempt to push through the morass. I press my brain and try to squeeze out words and meaning, but it dispirits and exhausts me. Struggling against it is in vain. With minimal exertion, my synapses seize and an impenetrable darkness descends, choking off thoughts and suffocating my words. I can do nothing but retreat to my bed for hours at a time, hopeful that when I wake the darkness will have cleared.

While it’s dispiriting to think about this (and even more so to verbalise it and put it to paper), it’s also encouraging. It’s a reminder that, even now that I have plenty of time, it’s still of utmost value, and must never be taken for granted. Minutes of clarity must not be squandered, nor hours or days of ability and energy. My time will be more focused – it has to be. That being so, I can resolve that my time will be more productive than it ever was, than it ever could have been, with my pre-sclerotic brain.



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I wrote this short essay recently after the subject of what keeps us from writing was proposed at a writing group I belong to. I intend to write a longer, more general piece too, as MS fatigue is something that's hit me hard; as one of the most common symptoms of MS, it's something that hits a lot of people hard. It's also one of the most misunderstood symptoms. The word fatigue completely fails to convey the reality, making it sound synonymous with being tired, or a bit low on energy, etc. This essay, however, was an opportunity for me to try and describe, during one of my more lucid periods, what the fatigue is actually like and how it impacts on something I love: writing. I hope you enjoyed it.

9 comments:

  1. I didn't really enjoy it, because enjoy is a weird word to use related to an essay on how things aren't as easy as they used to be. But it shed some light on things I never would've thought of, if it weren't for meeting you on the internet. I wish you a lot of fog-free moments, Ed. A lot of fog-free moments filled with writing and everything else you love doing.

    Can I ask you a personal question? How do you cope? I mean, not just at first, I've read your previous posts on researching and trying to find out how to help yourself feel better as much as possible. But today, now that you've been diagnosed for a while and had time to... I guess... adjust to the situation. From your writing you usually seem pretty calm, frustrated sometimes, though still in a calm manner.

    Maybe that's just the image I have of you. Ed sitting in front of his computer, thinking hard about words... Doesn't really go well with slamming doors or hitting walls.

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    1. Maybe that would be a good topic for a future post, Bibi. A big thing for me has been letting go of things that I can no longer do or will not be able to do - it was important for me to do that consciously as there was a grieving process to go through (there still is). Also, I often think about me being in just a new stage of my life now - just like leaving home, getting married or having children, each one brings about a different 'me', one with new challenges and opportunities, each requiring new skills and qualities. Granted, the 'MS stage' is something I would rather not have experienced at all, but now that it's here I need to learn to accept it and work with it.

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    2. I admire the fact that you have such a positive outlook, like when you said it's a new stage in your life (eventhough it's one you didn't pursue). Very inspiring! Especially since I'm not sure I would be strong enough to look at it that way. But then again, I'm only 24, and the biggest challenges I've had to face so far were exams and thesis-researches.

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  2. It sounds like a tremendously difficult thing, but you are soldiering through it with remarkable aplomb.

    The "black voids of nothingness, empty holes in my mind that frighten and disturb me" make me think of Johnny Smith's description of his condition from The Dead Zone. At least your MS is (as far are you're willing to tell us) unaccompanied by clairvoyant powers. Those tend to be more trouble than they're worth.

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    1. Nah (sighs). No supernatural powers here - that would be waaay too cool for MS : o )

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  3. Yes, I enjoyed every single word of your essay!
    I'm sure we will read plenty more like this one and we will enjoy them too!

    You're doing a great job battling fatigue, don't stop. :)

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    1. Thank you Evi. Things are improving all the time : o )

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    2. Ok, I'm waiting. (No pressure, though! ;) ) (Where's your gfc gadget? Blogger won't let me add blogs to my reading list manually anymore)

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  4. Essay writing can be a dance. You don t have to stay in one place and write from beginning to end. Give yourself the freedom to write as if you re circling around your topic rather than making a single, straightforward argument. Then, when you edit, you can make sure everything lines up correctly.

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