ME/CFS: Writer’s personal and professional inextricably entangled

missing.millionsTODAY IS MAY 12TH, INTERNATIONAL ME/CFS AWARENESS DAY

I had hoped, by this year, to have made more of a splash with a novel which has a main character who deals with CFS – and some of the complications, from exhaustion, to limited exercise capability (and especially very limited ability to INCREASE exercise over time), to pain, to brain fog.

It is difficult to write a character who is sick without triggering the pity response in readers – and then immediately checking out with “Who wants to read about that?”

It is difficult to write a character without making her seem inspirational for dealing with a major illness – this is called Inspiration Porn by disabled people who rightly don’t appreciate being called inspirational because they can get out of bed in the morning and try to make the best life they can of what Life has handed them.

And yet saying that giving a character CFS (or the old standby from the Romantic days, tuberculosis – otherwise known as consumption) is the same as giving them green eyes, just another character feature, is completely wrong. Though green eyes may dictate a character’s choice of lipstick or jewelry or clothing color, a major CHRONIC disease is a huge commitment for a writer, since it affects everything in the story. EVERYTHING. From the subject choice to the characters to how the writer (me) has to set up scenes and plot.

I write between the Scylla of ‘ick’ and the Charybdis of ‘does she still have that?’ Going too far in either direction immediately loses a portion of the audience, prospective or actual.

Today is International ME/CFS Awareness Day

And this post is about that, and it’s about me, and it’s about the story I chose to write, TOO.

I can’t help that. I have always said that I write from the fullness or paucity of who I am.

I don’t know how other writers do otherwise; I’m sure they find ways to tuck part of themselves and their life’s experience even into Sauron.

What it’s like, for me

I try to ignore it as much as possible, and yet a lot of my time is spent making sure I don’t do any of the things I know will bring that day’s writing to a complete non-starter. Such as eating too many carbs, not getting enough sleep, ignoring the start time for the next nap.

I spend a lot of time staring at the wall, able to surf the web gently, but not even capable of writing a blog post (and you can tell from the results how little thought goes into some of them!).

You don’t even want to hear the scads of coping methods – what’s the point?

My one determination is to let CFS destroy as little of my remaining life as possible; I’m partially successful at that. The rest of the time I’m fooling myself.

And I am depending on the kindness of family – who ignore my inability to be a normal participant in family life, to pull my weight, to not need things more than my ‘fair share.’

Even with an absolute minimum of what we can reasonably hold me responsible for, I get further behind every day. And any day that has ‘special stuff,’ such as today (which ALSO has me having to deal with insurance by phone – or risk not having pain relief because the company switched to a generic WHICH DOESN’T WORK) takes what little good time I have and pours it out like water on hot sand.

I don’t say this for any other reason than to stand witness on this day.

May 12, 2016.

Another year gone by with no real progress.

My 27th.

Verisimilitude – the appearance of Life

Considering what many of us PWCs (People with CFS) go through, the fact that I can sometimes write, and have actually worked my way through publishing a novel, is just short of miraculous – and I’m rather proud of the results.

In case you were wondering, things WERE better when I was Kary’s age; the mobility problems which bedevil my life came later, and might have been avoided (I won’t go into surgeons and knives – what’s the point? Hehe) had I known a LOT more, and had I not been the beneficiary of ‘old lady medicine’ (the kind of treatment which assumes that after a certain age, you aren’t worth saving).

Kary is NOT me, except in the small details and the normal amount of characterization that writers use: details such as outlook on life, a background we either have or research, a house in a place I’ve visited, a life in a place I know well enough to portray realistically for the purposes of the story.

Kary’s story is not mine: other than sharing a disease and some vacation landscaping and a proximity to Princeton, my life is routine – I have been happily married for 41 years now (Happy Anniversary again, dear husband), have never lost what she loses, have not had the experience of having big publishing pick up a historical novel that happens to go best-seller, have a different professional and personal background, don’t have the capacity to get through Anatomy…

Maybe we share having been affected by a particular set of books – but we grew up in different countries, so there can’t be that much overlap.

Wandering minds and brain fog

I’ll stop here, and list a few links to places doing a far better job of staying focused on real-life ME/CFS.

Me, I keep shying away from letting it have any more of me than I absolutely have to cede.

Links for ME/CFS International Awareness Day and CFS in general

  1. ME/CFS Action is doing a protest in Washington on May 25th (the day they could get a permit?). I have sent a pair of shoes which will represent me – if it isn’t obvious by now that there’s no way I could go there, park, walk, protest, …, you haven’t been reading this post or the blog.
  2. Some background on Jennie Spotila’s blog about the highly controversial PACE trials in Britain which in 2011 claimed to prove that all we need is behavior therapy to stop seeing ourselves as sick, and exercise therapy to get better. The British health system would love nothing better than to state there is already a ‘proven’ therapy which costs them very little, and that patients with ME/CFS are lazy – and sweep the whole thing under the proverbial carpet. BTW, when you want one-payer health systems, one of the things you get is a single-therapy for everything approach – and entrenched cost-cutting measures because of rationing.’ Look well, oh wolves,’ before you sign on. Budgets are ALWAYS getting cut.
  3. If you want to find out how many ‘solutions’ have been proposed, spend some time at Cort Johnson’s Health Rising blog – and you will be immediately depressed at the enormous number of unproven methods and supplements and ideas that have been put forth over the years, none of which have fixed much.
  4. Last one for today is also Jennie Spotila’s: she keeps track of one of the indicators of how our National Institutes for Health spend research money. When researchers, and administrators at government agencies, don’t believe something is real, they have no guilt about diverting money to their pet projects (some diseases have WONDERFUL PR – PR agencies and lobbyists riding the gravy train completely out of proportion to the number of people affected and the severity of the illness). And every week she points to one of the indicators of research money AGAIN being zero for a major disease.

I don’t mean to disparage all the researchers who ARE doing good things – without them we wouldn’t have ANY awareness to celebrate/memorialize/trumpet today. Some of them have been downright heroic.

I do mean to warn about the abundant quackery that rises up when the diagnosis isn’t known and there is no treatment that works for a ‘condition.’ People need hope, even when it dumps them with nothing, and money, time, and effort spent.

Depress you enough yet?

Not my intent. ‘Awareness’ is all we’re going for here today – readers here are no more responsible for fixing things than I am; if anything I am more (except that I can’t – but for the fiction).

I believe mightily in the power of fiction to change hearts and minds.

And a final plea: if you haven’t, consider reading Pride’s Children. And giving it to people or recommending if you like it. And writing a review.


MY GRATITUDE TO STENCIL for the ability to make images with quotes. If you use a lot, try them out.

 

 

 

 

 

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10 thoughts on “ME/CFS: Writer’s personal and professional inextricably entangled

  1. Jennifer

    Awareness raising is important: thanks for sharing. It’s easy for me, and presumably for others, to assume that the pace at which we live life is accessible to almost everyone. I am thankful I do not have CFS. I have learned to live with a number of medical conditions, but not one which would place such restrictions on me. I think of you, Alicia, as I stride through my walk most mornings: pleased to know you (online, at least) and delighted to have read your book.

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    1. Alicia Butcher Ehrhardt Post author

      And I love going along on your walks – it has been a real pleasure to see some of Tasmania!

      Those are gorgeous photos, and I know you’ve been there.

      I don’t do this often, awareness – it isn’t my charism, and others do it much better. When I write, I am focused on whatever I can do to make that happen. Except for the few who find new-age ways of running while dictating, we writers all have to spend long periods of time butt-in-chair, and there I am still exactly the same as anyone – when my brain is on, I write.

      I hoped I’d be doing some of that anyway. It is a privilege to be able to do it at all.

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      1. Jennifer

        You’ve seen some of Tasmania, some of New South Wales (Adaminaby is in the Snowy Mountains region of New South Wales) and a little bit of the Belconnen area of Canberra where I (mostly) live. All places in which I spend time 🙂

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