Friday, September 10, 2010

Body of work

I have had Fibromyalgia syndrome (FMS) for over a decade. I was diagnosed with the condition when I was thirteen.

I'd love to be able to write an inspiring little story about how I've overcome my symptoms through hard work and determination. Unfortunately, at the risk of sounding morose, the truth of the matter is that the syndrome has altered much of the course of my life and continues to dictate the vast majority of my creative and career decisions. For someone who hates being told what to do, and doubly hates being defined by such mediocre parameters, mine is a frustrating predicament indeed.

There are upsides and downsides to the restrictions the FMS imposes on my existence-- but mostly there are downsides. This being the case, I alternate between feeling sorry for myself and feeling a zen sort of detachment from my predicament, a fatalistic acceptance of all the things I've learned I'll probably never be able to change (otherwise known as 'whatevs who cares anyway').

Everyone with FMS has a slightly different profile of symptoms; mine include severe cognitive impairment (otherwise known as "brain fog"), fatigue, sleep disturbances, fatigue, muscle and joint pain, hypersensitivity to everything (exercise, pressure, kinesthetic sensations in general, temperature, barometric pressure, the way my meals are timed, the angle of the sun, noise, and, you know, existing in the world), fatigue, brain fog, and memory nonexistence.

Fibromyalgia is a disease with no cure. There are drugs for FMS-related pain, but many of them cause additional fatigue as a side effect. Convenient! To mitigate FMS symptoms, patients such as myself do all kinds of things, including being super vigilant about sleep habits, eating only the healthiest of foods, and keeping a regular exercise schedule-- of course, too much sleep is bad, and too much exercise is also bad for people with FMS. Too much food is probably bad as well, although I haven't come to accept that reality quite yet.

People with FMS appear to the outside world like normal humans who just can't seem to cope with modern life for some elusive reason. (fun fact.) Also, despite the fact that we have all kinds of fascinating MRI images to show that FMS' sufferers' brains function differently than those of normal humans-- especially in response to pain-- as an FMS patient I have suffered under the misconception that the syndrome is primarily psychological in origin-- i.e. that I am a hypochondriac. I'm sure other FMS patients get this as well. This misguided idea creates all kinds of exciting opportunities for me to educate my peers, employers and healthcare providers about the fascinating world of an FMS sufferer. I'm always totally excited to talk about my condition with people that think I'm crazy! Who wouldn't be?!

Not wanting to seem demented or high-maintenance or to get too many questions about my condition, I spend a lot of energy trying to hide my symptoms from the world. In the past, I've also tried to hide my symptoms from myself, in the hopes that ignoring them would make them disappear. Despite several attempts, this strategy has always proven futile-- but I'm sure that as soon as I start feeling semi-normal again, I will be tempted to pretend that I was never sick and that I can totally do whatever I want with my life.

Case in point: in the summer of 2009 I quit my full-time job, a clerical position at a nice university with nice people that was stable and responsible and mindcrushingly boring. I had two goals in mind:
1. to get my health under control;
2. to spend more time on bellydance.

What ended up happening is that I did absolutely nothing towards goal #1 because I was too busy scrambling to make ends meet and, even with health insurance, DOCTORS ARE SO EXPENSIVE OMG. Especially specialists. I'm not saying anything anyone isn't already aware of here, so I won't go into details, except OMFG WHY DOES IT HAVE TO BE THAT WAY.

I spent a lot of time on goal #2 in some really inefficient ways. Between classes, private lessons, and troupe practice, I was dancing at least 10 hours every week, usually more; not a day went by that I didn't dance. These 10 hours do not count all of the other administrative stuff related to a career in bellydance that all bellydancers must do-- maintaining a website, promoting yourself even though you'd rather die than promote yourself, sewing costumes (only for other people, though, because you need money, and maybe if you keep cycling through different combinations of the costume pieces you own no one will notice you haven't worn a new costume in a year and a half).

Of course, I also had a side job. Everyone has a side job, unless their significant other makes a ton of money or they're international superstars of bellydance.

Due to my ridiculous lack of stamina (which no amount of exercise has ever proven able to alleviate), I was usually so exhausted that I never had any energy to practice on my own. In other words, was spending all of my ATP doing stuff for other people (or simply making money so I could pay rent) and saving virtually none towards making myself a better dancer or working on my own choreographies.

Psychological and creative burnout was starting to set in at the time that my entire body basically threw a blue screen of death. It turns out that my schedule was simply not sustainable for my physical system-- nor for my financial, psychological, or creative existence. I got sick over and over again, I injured myself at least once a week, and I had chronic insomnia due to the stress. I was running around exhausting myself and still losing money every month. I was teaching myself to hate teaching, troupe practice, and dancing in general over what it was doing to my life.

I slowly came to realize that I will never be a professional bellydancer. Barring a miracle cure, there is no way my body will ever be able support my dance goals.
Financially speaking, it doesn't matter how technically proficient I become. Even if somehow I trained a million hours a week, promoted myself out the ass and became hyperpopular (assuming I could ever work up the confidence necessary to do that!) I know I would never be able to tour; I can't sleep in hotels, and any alterations to my schedule make my body shut down. Moreover, when I have to teach workshops all day and then perform in the evening, my performances suck. It's not rocket science, but it took me a while to figure out I can't not suck when I'm totally exhausted. And I hate sucking. Hate.

I can and will keep teaching classes locally, but I can't teach enough to live by. Besides, adding classes to your schedule causes diminishing returns-- the more classes you teach, the fewer people show up to each class-- especially when, like me, you teach Weird Fusion Bellydance and are already catering to a very specific, very limited market.

Once I came to accept this reality, I felt really awful about it for about a week. Now I feel okay with it. I will need to limit my involvement with bellydance in the future so that I don't run myself ragged again-- but that means I will be forced to evaluate everything I am doing and only do the things I am driven to do from a deep sense of creative need. Perhaps that isn't a bad thing. Now that I am pursuing other ways to support myself financially, I don't need to do everything I can pack into my schedule in order to survive. I respect anyone who can create art under those conditions, because I've come to realize that I can't. Art doesn't grow well in an environment of frenzied desperation, or at least it doesn't for me; if I can relax and let my dancing be what it is, rather than stressing endlessly over how to market myself and be constantly awesome so I won't starve, I'm sure I'll be a better dancer for it.

I'm 'downgrading' (not really) to hobbyist status in order to save my sanity and my creativity. There is no reason to keep chasing a goal that will leave my entire being drained and listless. I'm hoping to eventually create a life for myself where I have enough time to do whatever Weird Fusion thing I'm into, take classes, and keep growing as a dancer.

It's going to be awesome. Thanks FMS!!!*

*partial sarcasm implied.


  1. Sara,

    I know only too well of what you speak. This syndrome has changed my life in so many sad, frustrating ways since I was about 12. Uncle Michael used to say "if you work too hard, you will get sick" and I do. I've lost friends, a career, opportunities to take better care of my children, the ability to exercise and dance (ask your Mom how much I loved to dance), draw and every other thing creatively that I like. I've spent most of my life's savings to get better, with no results. I've just learned to accept it. Not that I don't get sad, or depressed, or even envious of people who can dance or work or make plans. I have a good day if I shower and wash my hair. My big accomplishment every week is to do the wash :(

    I'm sorry that you happen to take after me. I've often thought of writing an article or book where I tell the truth... not all things have a happy ending. I believed if I just tried hard enough.

    I am here to talk to anytime you want to talk to someone who understands and whose life has been drastically altered because of this syndrome. And, if you'd like to collaborate on a book, I'd like that too. I have a lot of anger and sadness, but have learned to cope and deal.

    I am wishing you relief, acceptance and a cure in your young lifetime. I have my eye on the new theory that it's a retrovirus and they'll find a cure. Btw.... did you think about going for disability?? You would get healthcare and a monthly stipend (if you paid into SS).

    I love you,think you are beautiful and kind.

    Aunt Debbie

  2. I can relate to the uphill battle of having an evasive, long-term illness.

  3. But you know what? Few people actually know their limits. I'm not talking about all the tons and tons of people who just assume they couldn't do something; I'm talking about the few who truly KNOW, who have felt, who have gone to their extreme and tried to push past their own limits. I have been there myself, for very different reasons, and it sucks ass to find out that something you wanted so bad is just out of reach for reasons that are out of your control. It's small comfort, I know, but at least we TRIED, which is more than most people can say of their dreams. And now, on to other dreams. I guess. Right?

  4. Thank you, everyone...
    Alyssum, I am in many ways relieved to give up a goal which was stressful and in many senses kind of oppressive for me to uphold. I'm actually happier thinking that I will be able to find a happy medium, rather than killing myself to reach an unrealistic goal.
    The process of realizing that the goal was unrealistic was not fun, but I'm coming to terms with it.