gkingsley (gkingsley) wrote in fmspagan,

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At Least You Have Your Health

Every year I try to write something for fibromyalgia awareness day, but this year I was just too fatigued. So here it is, a week and a half late.

X-posted all over the damn place.

My teacher posed a question to me a few months ago: how have I taken my worst fear and turned it into my greatest triumph? I gave her an example culled from the beginning of my relationship with my husband, about 7 years ago, and it was a perfectly valid response. However, the question has been preying upon me. Sure, Gayle, 7 years ago you took your worst fear and turned it into your greatest triumph, but what have you done for me lately? When I woke up this morning, the answer was there.

Three years ago, I got sick. I got really sick, I couldn't sleep for more than an hour at a time, my body hurt all over, I was completely fatigued and I couldn't concentrate on anything. Doctor after doctor checked me out, did batteries of tests, took oceans of blood and urine, and came up with … nothing. There was nothing wrong with me; that is, nothing that their tests could discover. After months of trying and failing to come up with a reason for my sickness, the rheumatologist told me the news: he was giving me a diagnosis of fibromyalgia.

"The good news, Mrs. C, is that we know what is wrong with you. The bad news is, there isn't fuck all we can do about it. Sure, we can try drugs that have worked for other people, but they may or may not work for you, and you may have the most miserable side effects you can possibly imagine. We can give you pain medication, but never enough, because we wouldn't want you to become dependent, would we? It looks bad on our malpractice insurance if you become an addict. There are doctors who will tell you it's all in your head; hell, there are members of your family who will tell you it's all in your head. Well-meaning people will tell you that this or that alternative treatment worked for them, someone they know or read about in Reader's Digest, and you should try exercise, yoga, acupuncture, enzyme therapy, bioelectric manipulation, drinking yak's piss on the first night of every full moon, et cetera, et cetera, and will get irritated with you if you don't try their idea, because clearly, you're not really trying to get better.

Welcome to hell, Mrs. C. Now try this pill."

I'm paraphrasing, of course.

Now, it's been three years since my diagnosis. My body still hurts, sometimes all over, sometimes in random spots, like my wrists, my back or radiating down my legs. If I don't take sleeping pills every single night, I can't sleep for more than an hour at a time. Lately, I've been so tired and fatigued I can't make the most simple connections of logic. My boss says something to me and I have to have him repeat himself multiple times because my neurons just aren't firing. There are times that I can't do anything. I have to lay still, trying not to flex anything, because every movement sets off a chain reaction of agony that won't stop until I subdue it with narcotics. Right now I am able to work, but it wasn't always so; I spent a year unemployed, spending $1,000.00/month on medications so powerful that they're worth easily twice that on the street. Not that I could sell any; I was too busy taking them to try and stave off the pain.

Right now, I am not on any narcotic painkillers at all, but I am acutely aware that I will not be able to sustain this drug-free existence. I'm waiting with baited breath for my health insurance to kick in, and hoping against hope that I've been off the radar for long enough for this to not be considered a preexisting condition. It's a futile hope - I got a dunning letter from my new insurance company saying that they will not cover any preexisting conditions for a year starting in June, but they failed to specify exactly what preexisting conditions they were refusing to cover. Everything I've ever had, I suppose. Bloodsuckers.

When I was younger I used to say, "If nothing else, at least I have my health." Well, now I don't have my health anymore. My health, like Elvis, has left the building.

I also used to say when I was younger, "get up and live or lay down and die. There is no third option."

My greatest fear, going back to the original reason for this piece, is that I will never get better, that indeed, I will keep degenerating until I am a useless, nonproductive member of society, a drain on the resources of my husband, family and friends. I fear that there is a third option: an inability to get up and live, but a stubborn refusal of my body to go that extra step and die already and let me start all over again. It is the fear that wakes me up in the middle of the night and echoes through my body when the pain wracks my limbs and keeps me from getting up off the couch. And I know that this is a realistic fear, because I have been already experienced a time where I had to take 60 mgs. of morphine to get from my bed to the couch. I had to sell my home because I couldn't bring in the second paycheck that we needed in order to pay the mortgage and the bills. We moved from the house to a camper in the Renaissance Faire lot in the hopes that shedding some of our materialistic weight would help shed some stress; then when winter came and I couldn't find an apartment that would take my dogs, I had to depend on the kindness of my parents to put us up in one of their apartments, a hole in the wall in Naugatuck, CT, which is possibly the most horrible city in the entire state.

Things have started looking up. I'm working again, and we've moved out of Naugatuck into a sunny, 2-bedroom apartment in Norwalk, which is where my husband and I both grew up. We're slowly building our lives back up to a place of hope and not of desperate sliding toward the void of "how are we going to eat?" But it's so tenuous. I could worsen at any time. Right around the corner is the possibility that I will have more pain, more sleeplessness, until I can't work or indeed do any of the things that make my life worth living.

So how does one take that soul crushing fear and turn it into anything hopeful, much less one's greatest triumph?

Well, I'll tell you - it isn't easy. It is possibly the hardest thing I've ever had to do, but for the sake of my sanity and my marriage, it has been absolutely necessary to take this black hole of terror and re-forge it into the sword of my victory. This is the climactic battle; this is the penultimate scene in my personal movie. There is no room for error here.

The most important thing is that I cannot concentrate on my fear. If I focus on the fear, it eats at me like a cancer and before I know it, I am consumed; but if I don't let it in at all, it waits until there's a chink in my armor and at the first sign of weakness, it swarms in, again consuming me.

So the first rule is, don't let it in or keep it out. Instead, when the fear comes, I have to experience it. Feel it, but not experience it to the exclusion of all else. I am reminded of the Bene Gesserit Litany against Fear on page 19 of Frank Herbert's classic, Dune:

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

Now, once I've felt the fear and let it pass through me and over me, I have to take the fear and use it to create something positive - my greatest triumph. For me, my greatest triumph, the thing about myself that makes me feel proud of myself, is strength. Obviously, I am not a physically strong person; I can't throw a Volkswagen. But when things are as bad as they can be, my emotional strength rises to the top and I muscle through the challenges placed before me. I am a very strong person. For someone with a self-image as bad as mine, the fact that I can make that statement is a miracle in itself.

So I take my fear of pain-wracked uselessness and I say, "it might happen. It could happen. If it does happen, I will rise. I will wear a strong face and not cave into the void of hopelessness. I will continue to aspire to better things, to take chances and work for well-being. I will not torture myself with pipe-dreams of complete health, because that sets me up for failure and more fear. And if the worst happens and I am bedridden, I will work toward productivity in new and creative ways. I will not give up. I will never give up."

It's a constant battle, one that I haven't won by any long stretch of the imagination. Sometimes I give in to the fear just because I'm too tired to fight. But mostly, I fight, because I have no choice. I must get up, and live.
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