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Artist, Heather Oliver             

For a Breath I Tarry

(Shropshire Lad XXXII, A. E. Houseman)

Kahlo Hummingbird

The readers of my blog may have noticed I’m posting far less frequently than I used to.

Some of it is watching the same old endlessly repeat. More discouraging shenanigans in [fill in country/community name]. More Republithug tantrums about “entitlements” except for those of millionaire donors. More breathless pseudoscience from futurists, transhumorists, spiritualists. More concessions demanded by/for fundamentalists of all stripes. More mediocre fiction touted as “fresh” and “groundbreaking” by people who haven’t read beyond Internet freebies.

Some of it is my transition into the infrastructure-free sphere of self-employment. This included taking leave of what was and taking stock of what might yet be. Prominent in the latter is a successor to The Other Half of the Sky, as well as writing and publishing more of my own fiction. Not that I foresee the latter becoming any easier: my fiction stubbornly remains middlebrow genre fusion with non-standard mythic/cultural references. The pile of unpublished work clogs the creative pipes, making it hard for me to write new stories.

Some of it is my fibromyalgia, acquired as the aftermath to the shock of a cancer operation that went awry. The surgeon hit an artery and I nearly died of blood loss. It’s also possible that I suffered a minor stroke, because I had a two-month period of profound loss of both memory and fine motor control. I, the bookworm with Velcro recall, couldn’t remember my parents’ phone number or the contents of a book page I had just struggled through. After a black hole of panic, my memory and coordination more or less returned carrying fibromyalgia along with them. That was a bit more than six years ago. I’ve dragged the relentless pain with me since, a jagged iron ball that slams into me with each step I take.

Fibromyalgia is a misnomer that attempts to describe the fact that FM sufferers feel like they’ve being hit non-stop all over with a meat tenderizing hammer. In fact the disarray is entirely in the head: something mis-sensitizes the sensory processing apparatus, so that normal input is interpreted as pain; for some reason this sets up a positive feedback loop that increases the amplitude of the incorrect response. People get FM after a car accident, after a difficult childbirth – generally after a shock. It’s the whole-body equivalent of phantom limb pain. But whereas the latter can be ameliorated by using a low-tech yet often effective technique called Ramachandran’s mirror, there’s no similar solution for FM.

As a result, FM sufferers hurt even when they don’t move, even when they sleep – which means they don’t get the length and quality of sleep needed for full restoration. They become stiff, clumsy, lethargic, forgetful, slow-witted; they often gain enormous amounts of weight because it’s hard to move, which brings its own raft of troubles: heart problems, diabetes, certain types of cancer. And since sensitized neurons are not visible, FM diagnosis is solely by exclusion after batteries upon batteries of metabolic and neurological tests. Most often and unless they persist, FM sufferers are dismissed as hysterical (sic) hypochondriacs, a conclusion made even more convenient and acceptable by the statistical fact that most are women.

The “treatments” for FM – if they can be called that – are drugs that tamp down the nervous system (anti-epileptics, benzodiazepines, SSRI/SNRI antidepressants) or that decrease pain perception; one of the latter is tetrahydrocannabinol, THC, the primary active component of marijuana. The casual off-label use of the first group at the drop of a hat has turned people into obese zombies, the placebo-vs-real-effect issues of the SSRIs have never been resolved (let alone the suicidal tendencies they facilitate) and long-term use of benzodiazepines is known to cause irreversible cognitive damage. THC appears to have far fewer and milder side effects, low addictiveness and no withdrawal issues. Unfortunately, it has run into the savage prudery of many societies, including the US.

Several US states have legalized medical marijuana but the federal government has zealously prosecuted any attempts to follow through (on the other hand, the NRA continues untrammeled and unopposed after each mass shooting). One recent state to legalize medical marijuana was Massachusetts – but the dogged refusal of the federal government to countenance legalization of a substance that causes zero violence means that the doctors in Massachusetts have no idea how to prescribe effective doses and are very resistant to the concept. Like abortion, this legalization will most likely remain just a gesture on paper.

I was given benzodiazepines and anti-epileptics briefly when I had an acute episode of neuralgia after a dental procedure. That eventually subsided. Their effects on me made me decide to never use them again – and my reading on the effects of SSRIs/SNRIs made me determined to never let them anywhere near my neurons. So I’m ignoring my FM as much as it will let me. However, if medical marijuana goes past the stage of in-name-only, I may well argue one of my doctors into letting me have a try. I have no illusions it will placate the shadow twin that has taken ownership of my neurons much, or for long. But it will be good to remember for fleeting moments what it’s like not to feel pain.

lewis-queenRelated Posts:

It’s All in Your Head

The Hunter

Of Federal Research Grants and Dancing Bears

On Being a Ghost

Images: Frida Kahlo (who knew pain intimately), Self-portrait with Thorn Necklace and Hummingbird; one of the Lewis chess set queens.

10 Responses to “For a Breath I Tarry”

  1. CWJ says:

    Although I know you are not looking for sympathy, our hearts go out to you. There are bits of the story here I didn’t know before.

    I’m looking forward to the next anthology (and I better get to work on my submission)!

  2. Athena says:

    Thank you, dear friend. As for telling this story… you know me. I’m not much for discussing this type of thing or “care and feeding” instructions. Boring to others, boring to me.

  3. intrigued_scribe says:

    Stirring as always.

    Greatly appropriate inclusion of one of Frida Kahlo’s paintings, and I very much hope there comes an effective solution that brings relief with it.

  4. Athena says:

    Thank you, my dear!

  5. Walden2 says:

    I am very sorry you have to deal with this Athena and it is difficult not to be able to really help you in some way. At least you are making others more generally aware of your condition, both those who suffer from it and the medical profession.

  6. Athena says:

    Thank you, Larry! It will take some time for the medical profession to come around — they have more inertia than an aircraft carrier.

  7. Christopher Phoenix says:

    I am very sorry that you must face this sort of chronic pain every day- being a relative newcomer to this blog I had not heard this story before. My heart goes out to you and I hope you find an acceptable means of relief soon!

    I second Walden2- raising awareness of FM can’t help but (eventually) push the medical profession to devote some more effort to seeking a real solution. I must admit that I had not even heard of FM before this post- it isn’t commonly discussed among the battery of diseases in the popular consciousness.

  8. Athena says:

    Thank you, Christopher! FM is one of those diseases that are hard to deal (by both sufferers and doctors) with because of their intrinsics.

  9. Asakiyume says:

    I appear to have missed many of your blog posts–I put it down to not being online quite as much. Your description of the constant pain is vivid and effective: i stand in awe of all you’re able to accomplish, living with that torment. I hope with all my heart that medical marijuana becomes a real possibility, and that it *does* reduce your pain.

  10. Athena says:

    Thank you very much for the wonderful words, Francesca! Bravado and cussedness aside, the bitter fact is that the non-stop pain has significantly curtailed my ability to function as efficiently and productively as I’d like.

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