Not Broken, Merely Bent

This is fucking upsetting – I was rambling about the blogosphere this morning, merrily tripping down a thoughtpath from writing to writers to other writers and ended up on a blog I’ve never seen before but really liked. Checking out the sidebars, I see that this blogger did a blogathon last August to benefit the National Fibromyalgia Research Association through her Zazzle store. This is a cool thing, I think, because I have fibro and am getting better and it’s amazing how much people don’t know about it so research and public education are all to the good, so I look at the Zazzle store and there are tee shirts and I feel like I’ve been slapped across the face.

The first 5 tee shirts I get – either Fibro Friend or Fibro Caretaker or Hug Gently (gods I know that one – I hate it when it hurts to be touched) or Friend in Pain are all messages that inspire questions and thus are opportunities to raise awareness. The last two I have a major issue with – they proclaim, respectively, that the wearer is Disabled or Broken. To which I can only reply, despite the no doubt best intentions of the person who created these shirts for sale and most certainly not directed at her specifically, but more at the universe and at the mindset that this sort of abject labeling is okay…

Fuck You.

I am not broken.

I have never been broken and I will never be broken. I’m not a clay doll or some other subhuman overobjectified girlthing that can be taken out of its shiny pink can and rattled around and banged on the floor then stuffed back inside when cracks start to show, when chunks split and flake off, when juice starts leaking out. I am a human being, and parts of me have been broken, yes – bones, specifically, and my internal thermostat in general after getting severe heat stroke, and on regular occasions a fingernail or two – but I as an entity, as a human being, am not broken with the implied semiotic associations of defective and disposable simply because I have chronic pain and fatigue and many of the other fun things that go with fibromyalgia so have to take vitamin and mineral supplements and get enough rest and eat right and pay attention to my body in a culture that asks me to deny it to the eradication of self if it’s not Barbie-perfect.

I have to wonder at the mindset of someone willing to assume the label of “broken.” Are they asking for a lifetime hall pass for whatever they don’t feel like dealing with? Are they genuinely convinced that it will never get any better and this is what their life is relegated to? Is it tongue-in-cheek, ironic or sarcastic? What the fuck?

When I was first diagnosed with fibro back in July I had a problem with the diagnosis – mind you, I’d gone to my doctor with the comment that all my stuff sure resembled fibro, but argued that it couldn’t be because of course I was in constant pain, I’d broken too many bones and had osteoarthritis in my neck and knees and and and… she gently pointed out to me that bodies heal and that it’s not normal to have constant pain at the site of an old break years later. Much less at the site of every break. And at other sites that were not directly associated with broken bones or soft tissue damage. Or to have to sleep 12 -15 hours a day to feel clearheaded and able to focus. She was right. It’s not normal. But it’s also not a permanent state of being, despite Western medicine’s lack of a cure. She offered me prescriptions for antidepressants and NSAIDs – an SSRI would help somewhat with the constant pain and the NSAID would help somewhat more. The thinking in Western med is that fibro is somehow triggered by a sleep disorder – they have no cure for the disorder, don’t fully understand its causes yet, but the bandaid logic is that if you lessen the pain you can relax enough to sleep, the body can heal and refresh, which lessens the pain some more, relieving some of the fatigue, and so on and so forth. It doesn’t work for many people, and I wasn’t willing to dope myself up on the off chance it wouldn’t totally fuck me up, so I refused the meds. Instead, I went on the internet, my source of all things wacky and informational.

First thing I found were support groups. I get that as they stand, they work for some people, but after skimming the posts for a few days on the couple of groups I joined, I was suicidal or homicidal, take your pick. I’ve rationalized that everybody there was using the forum to vent to others who got it, but what it felt like to me was a big whine-fest. Some of the most vocal were also some of the most helpless by choice. It’s a vicious cycle – in pain, nothing works to relieve the pain, feelings of hopelessness and depression set in, pain becomes the focus so feels worse, still nothing works, etc. That’s a cycle I can never let myself fall into. It’s a place I simply will not go. I bore the pain for years, back into my teens as long as I remember it was always there – between one injury and another sparking pain into a slow burn that accelerated into a conflagration I ignored because it was one more barrier between me and a life I wasn’t having any fun in. I like my life now and am no longer willing to live with the pain, to bear it like a dumb animal with no hope or realization that there can be another way. Those support groups don’t see that there can be another way, they accept what is as what must be. Fuck that too.

I’m doing better now, taking one day at a time and experimenting with some new boundaries around what I am and am not willing to tolerate for myself. Sleep, enough sleep as represented by enough time to lie down and rest because I am not cramming my day full of busywork or running so fast I can’t feel anything but pain nipping at my heels or clawing into my spine, has become my lodestone. With enough sleep, anything is possible. Without it, I’m a bombed-out shell of myself. Cutting down on sugar and caffeine has been amazing – when I go for the fudge or the double latte at 4:0 p.m. I pay a price within 48 hours – not instant feedback but pretty damned close. I cried when I first came home with the eight bottles of vitamins and minerals and supplements that, by group and preliminary scientific consensus, seem to be effective in treating fibro. Never mind that most of them – the multivitamin, the mineral supplement, the glucosamine/chondroitin horsepills – are things I feel better taking anyway. The others are optional, and a few I’ve stopped as they seem to have no real benefit, but that first day that I stood at my dining room table and took the wrapper off each bottle felt like I was capitulating to something insidious.

I’ve come to realize that it’s just maintenance, like sleep and exercise and real food – taking care of myself. I’ve been getting regular acupuncture treatments at the doctoral pain clinic at my school and have had entire days with no pain for the first time in years. My energy is returning as well… maybe I’m not quite at my Type-AAA personality zoom levels, then again, maybe I should never go back there whether I am able to or not. Maybe it’s not the best way to go through life – running as fast as I can to avoid being present. I’ve been down the last week with the flu from hell that’s going around, but if I hadn’t been laid up, I would have been going for walks. That’s how healing works for me. One foot in front of the other and keep moving. When it gets overwhelming, which it sometimes does, I remind myself that the only way to eat an elephant is one bite at a time, and since it’s a big fucking elephant, I’ll eat while I walk. I have been folded, spindled, mutilated and bent, but I am not broken.


6 Responses to “Not Broken, Merely Bent”

  • Autumn Says:

    Those words weren’t meant only for those us with Fibro. They are meant for others as well.

    “broken, but still good.” is from Lilo & Stitch. It’s a joke my husband and I share when I’m in flare. Disabled is the legal term, and yes, I think it’s important to address it. Because only through explaining to people that disabled doesn’t not mean truely broken or useless, can we begin to see it too.

    Did you check out my Fibro page, or some of my recent posts on pain and flaring? I agree with you that it’s about maintence. 100%. I don’t go to or particpate in the pity parties so many people with Fibro do. I like you have multiple diagnosis. Like you I work hard to maintain my health, and unlike so many I am doing well, in my opinion.

    Months ago, I posted this. Maybe that will make it clearer on how I see my illness. I find that accepting labels and making them my own gives me power when others try to label me. That’s where I’m coming from.

    I’m glad you have support and goals. I do too. I’m glad you’re improving and accepting your limitations while continuing to push them. There seem to be, openly, so few who do.

    Please, stop back by, and search my site for info on Fibro and pain, and my struggle with this illness. You’ll see there’s a lot of humor and light heartedness along side the self contemplation and struggle.

  • Gillie Says:

    I understand your attitude to the pity party aspect, and I like your anger and the way you write, but just because they sound whiny doesn’t mean the pain isn’t real, and just because you can control and handle your pain, doesn’t mean everyone can. And you have to understand, some people’s pain is worse than yours and needs more medication.

    There’s no way to prove pain, and some days you have to whine. Even if it’s quietly under your breath as you climb that damn mountain one more time.

    What gets to me more than the whiny is the sickly-sweet. I’m pissed off, don’t try and hug me, especially if it’s a *hug*.

  • inkgrrl Says:

    Autumn, if reclaiming the labels works for you, more power to you – I get the approach, but I’m just not there yet. I think fibro definitely hits you harder than it has me, and you’re a lot more graceful in dealing with it than I’ve so far managed to be. Channeling the energy from my anger about it into a positive direction is what’s kept me going and what’s helping me heal. The enlightened approach would be acceptance with no anger, but darlin’, I ain’t that enlightened. I’m pissed off, no two ways about it. I hope that some day I will find the grace and humor you have.

    Ghillie, I don’t judge people for being in pain and needing what they need to get through the day. (Believe me, if I could control and handle my pain I wouldn’t have gone to the doctor about it in the first place.) It’s those folks who ceaselessly complain but are willing to do nothing to better their situation because it’s become comfortable, who fall back to the word “can’t” instead of owning their choices, who I don’t want to be around. We all have moments of feeling sorry for ourselves – that’s only human, and frankly I wonder if my anger about fibro is just me feeling sorry for myself with lots of sparks on top – but it’s not cool to wallow. There’s the statement, “this is pissing me off,” and there’s the follow-up question, “what can I do about it?” I’d rather keep asking the question than stay stuck in the statement.

  • inkgrrl Says:

    By the way, to me whining while climbing the mountain is just making noise to catch your breath – it’s a qualitative difference in the positive direction. Bitching, if you will. Semantics… the important thing is that you’re climbing.

  • Autumn Says:

    I’m still get angry too. Don’t think otherwise. šŸ™‚

    Thank you though, I try grace, even though I often feel like I’m always tripiing over my own two feet.

  • Nora Says:

    You go babe…

    Excellent blog.

    I’m sending you tons of love and hugs of the not-painful variety. šŸ˜‰

    Smooches…

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