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.
Friday, September 10, 2010
Thursday, September 9, 2010
New choreography video
This is the first of two videos I recorded last weekend during Hannan Sultan's performance DVD shoot. Hannan graciously let me use the stage while she was taking a break between performances.
This was my first time being filmed by a professional company. I think the final video turned out really well!
This was my first time being filmed by a professional company. I think the final video turned out really well!
Thursday, September 2, 2010
What the...
I just noticed that one of my videos, embedded below, has somehow amassed over 100,000 views on YouTube since I posted it in 2006.
I'm posting this not because I want to brag, but because I'm amazed and humbled and more than a little confused.
I performed this dance live in front of perhaps eighty people, ninety at most. I was unsure if anyone would like it-- I was worried it'd be too "over the top" for everyone's taste. I remember watching the video afterward and sort of hating it. All I could focus on were the rough edges around my technique.
I put it on YouTube just so I could post it on Tribe.net and get some feedback from other dancers. If I had imagined that one hundred thousand people would end up watching it-- some of them professional tango dancers, many of whom were offended by it!-- I very well might have left it offline.
Now I watch the video and I enjoy it in the same way I'd enjoy someone else's performance; I have enough distance on 2006 Sara that she's practically another dancer to me at this point. I'm proud of what I was able to accomplish at the time, given my limited skill set and lack of experience. Despite its technical problems, I think that the dance 'works' because I was committed to what I was doing, I prepared more than enough ahead of time, and I knew my music really well.
If nothing else, I think the fact that I love the song enough to marry it comes through loud and clear. I like that.
What I take from this experience is that it's not always all about skill when it comes to making art; sometimes passion is enough.
I'm posting this not because I want to brag, but because I'm amazed and humbled and more than a little confused.
I performed this dance live in front of perhaps eighty people, ninety at most. I was unsure if anyone would like it-- I was worried it'd be too "over the top" for everyone's taste. I remember watching the video afterward and sort of hating it. All I could focus on were the rough edges around my technique.
I put it on YouTube just so I could post it on Tribe.net and get some feedback from other dancers. If I had imagined that one hundred thousand people would end up watching it-- some of them professional tango dancers, many of whom were offended by it!-- I very well might have left it offline.
Now I watch the video and I enjoy it in the same way I'd enjoy someone else's performance; I have enough distance on 2006 Sara that she's practically another dancer to me at this point. I'm proud of what I was able to accomplish at the time, given my limited skill set and lack of experience. Despite its technical problems, I think that the dance 'works' because I was committed to what I was doing, I prepared more than enough ahead of time, and I knew my music really well.
If nothing else, I think the fact that I love the song enough to marry it comes through loud and clear. I like that.
What I take from this experience is that it's not always all about skill when it comes to making art; sometimes passion is enough.
Goals for September
It's September already. I'm so glad to be nearing the end of summer here in North Carolina and entering the season of the spooky. Autumn is my favorite! I need to start getting my Halloween costumes together...
Just as in August, I'm going to list my goals for September. I will try my best to actually stick to them this time. Only time will tell if I'll be successful!
Finish the second draft of the novel. I just finished my second draft of Chapter Nine, so I have six chapters left to edit. They get increasingly shorter as the end of the book approaches, so I don't think this will be too difficult.
Read a novel about vampires and a novel about something else. Next in my stack of vampire books is Let The Right One In by John Ajvide Lindqvist; it comes highly recommended and I'm excited about it. My husband also wants me to read The Bachman Books by Stephen King. So, that's currently my plan. Next in my tour of fine vampire literature I think I might try to read some Anne Rice, just because. We will cover that in October.
Get back in the habit of doing morning pages. Morning pages are a tool for developing creativity described in The Artist's Way by Julia Cameron. I was doing morning pages for bellydance for a while last year, but abandoned the practice due to lack of gumption and/or sticktuitiveness (a quality the Japanese refer to as ganbaru). I need to get my ganbaru back, and I hope this will help. I have found that training ganbaru is like training a muscle: it gets easier when you do it more and harder when you slack. Knowing this doesn't make it any easier to work at it, however, especially when I'm so out of practice.
Work hard on choreography at least 3x a week for at least 2 hours at a time. I have shows I need to prepare for and I am not a fan of sucking. That means choreography and choreo practice are necessary. I hate choreography; I love choreography practice. Whatever. I have to do both regardless of my feelings or preferences.
Write a damn pitch for the book. I could whine about how I don't want to, but instead I should channel all of that energy into making it happen. But... uuuughhhh I don't want to... --SARA! NO!
Keep blogging regularly. I get a pass for this last week and a half because I was busy preparing for and then hosting an AWESOME workshop weekend with Mira Betz, who is basically my bellydance spiritual guru at this point. Is that creepy? Perhaps. Do I care? Not even a little.
Those are good goals. If I can get that much done, I'll be happy with myself. I'm more employed now than I was this summer, so I don't have quite as much time to stare at my words in my glowing rectangles. Nothing a few responsible habits and time management strategies won't fix. Ah, semiadulthood.
Just as in August, I'm going to list my goals for September. I will try my best to actually stick to them this time. Only time will tell if I'll be successful!
Finish the second draft of the novel. I just finished my second draft of Chapter Nine, so I have six chapters left to edit. They get increasingly shorter as the end of the book approaches, so I don't think this will be too difficult.
Read a novel about vampires and a novel about something else. Next in my stack of vampire books is Let The Right One In by John Ajvide Lindqvist; it comes highly recommended and I'm excited about it. My husband also wants me to read The Bachman Books by Stephen King. So, that's currently my plan. Next in my tour of fine vampire literature I think I might try to read some Anne Rice, just because. We will cover that in October.
Get back in the habit of doing morning pages. Morning pages are a tool for developing creativity described in The Artist's Way by Julia Cameron. I was doing morning pages for bellydance for a while last year, but abandoned the practice due to lack of gumption and/or sticktuitiveness (a quality the Japanese refer to as ganbaru). I need to get my ganbaru back, and I hope this will help. I have found that training ganbaru is like training a muscle: it gets easier when you do it more and harder when you slack. Knowing this doesn't make it any easier to work at it, however, especially when I'm so out of practice.
Work hard on choreography at least 3x a week for at least 2 hours at a time. I have shows I need to prepare for and I am not a fan of sucking. That means choreography and choreo practice are necessary. I hate choreography; I love choreography practice. Whatever. I have to do both regardless of my feelings or preferences.
Write a damn pitch for the book. I could whine about how I don't want to, but instead I should channel all of that energy into making it happen. But... uuuughhhh I don't want to... --SARA! NO!
Keep blogging regularly. I get a pass for this last week and a half because I was busy preparing for and then hosting an AWESOME workshop weekend with Mira Betz, who is basically my bellydance spiritual guru at this point. Is that creepy? Perhaps. Do I care? Not even a little.
Those are good goals. If I can get that much done, I'll be happy with myself. I'm more employed now than I was this summer, so I don't have quite as much time to stare at my words in my glowing rectangles. Nothing a few responsible habits and time management strategies won't fix. Ah, semiadulthood.
Saturday, August 21, 2010
Book pitch haiku
I am trying to figure out how to distill the themes in my book down to a one-sentence pitch. This is the result.
I.
Amnesiac girl
Is taken on a road trip
By new undead friends.
II.
Her resemblance to
a strange man's blood relative
left her bleeding out.
III.
She doesn't complain
about her predicament;
her tongue has been tied.
IV.
Having ingested
the blood of a vampire,
she glimpses the past.
V.
Her dreams indicate
that her poor career choices
created this mess.
I.
Amnesiac girl
Is taken on a road trip
By new undead friends.
II.
Her resemblance to
a strange man's blood relative
left her bleeding out.
III.
She doesn't complain
about her predicament;
her tongue has been tied.
IV.
Having ingested
the blood of a vampire,
she glimpses the past.
V.
Her dreams indicate
that her poor career choices
created this mess.
Friday, August 20, 2010
Progress on August goals
Well, believe it or not, August will soon be over. It's time to check in with my goals for the month and see how I'm doing so far!
Goal One: Edit five chapters
I have edited SEVEN chapters! That's about half of the book. Gold star!!
Get the word count down by at least 5k.
I think I was insane when I made this my goal. I have only managed to cut out a little over 4k words. Still, that's almost enough to reach my goal. Silver star!!
Research how to write a good summary.
I haven't worked on this at all! No star!!
Write a pitch.
I've thought about this a few times and haven't written anything down. Demerit!!
Blog regularly.
I've blogged more than I've ever blogged before in my life-- at least once a week. Unicorn sticker!!
Read a book about vampires.
I read one book (Dracula) and started on another (Lost Souls by Poppy Z. Brite). A+!
I still have a few days left to attempt to do something about the summary and the pitch. Notice how I have a mental block about the stuff related to submitting this book for publication? Hmm.
I have a feeling that both the summary and the pitch are going to be difficult.I think condensing the plot to a summary will make it sound like all my characters are on speed or PCP. It is not a dreamy, atmospheric book. It is a book in which many things go down, and often.
The pitch is even scarier. For one thing, the book has two non-concurrent storylines and two(ish) protagonists. Do I just pitch the "main" storyline and have the other one be a secret? Even if I do this, the concept of the main storyline is sort of odd. The idea of condensing it to a sentence or two makes me apprehensive.
I didn't set out to write something so complicated, but I've come to find I am like the King Midas of complication-- everything I touch gets ambiguous and intricate and obtuse.
Oh well. I'm certainly overthinking this.
Are any of you lovely readers out there good at writing snappy copy? Any advice?
Goal One: Edit five chapters
I have edited SEVEN chapters! That's about half of the book. Gold star!!
Get the word count down by at least 5k.
I think I was insane when I made this my goal. I have only managed to cut out a little over 4k words. Still, that's almost enough to reach my goal. Silver star!!
Research how to write a good summary.
I haven't worked on this at all! No star!!
Write a pitch.
I've thought about this a few times and haven't written anything down. Demerit!!
Blog regularly.
I've blogged more than I've ever blogged before in my life-- at least once a week. Unicorn sticker!!
Read a book about vampires.
I read one book (Dracula) and started on another (Lost Souls by Poppy Z. Brite). A+!
I still have a few days left to attempt to do something about the summary and the pitch. Notice how I have a mental block about the stuff related to submitting this book for publication? Hmm.
I have a feeling that both the summary and the pitch are going to be difficult.I think condensing the plot to a summary will make it sound like all my characters are on speed or PCP. It is not a dreamy, atmospheric book. It is a book in which many things go down, and often.
The pitch is even scarier. For one thing, the book has two non-concurrent storylines and two(ish) protagonists. Do I just pitch the "main" storyline and have the other one be a secret? Even if I do this, the concept of the main storyline is sort of odd. The idea of condensing it to a sentence or two makes me apprehensive.
I didn't set out to write something so complicated, but I've come to find I am like the King Midas of complication-- everything I touch gets ambiguous and intricate and obtuse.
Oh well. I'm certainly overthinking this.
Are any of you lovely readers out there good at writing snappy copy? Any advice?
Friday, August 13, 2010
Mini progress report
The second draft of Chapter 4 is done. Yay! Now I get to work on Chapter 5, which, in my opinion, was one of the best chapters to begin with-- it has two of my favorite scenes in the book. I am excited about getting to work through it again.
So far I have managed to cut 3033 words from the manuscript and I don't miss any of them. I've only been cutting things I'm 100% convinced are extraneous; I could probably cut more in the long run, but I'd have to really start thinking about what I was doing. I don't want to cut too much and leave the text feeling dry and anemic.
I have been getting some great feedback from my test readers. It's so helpful to have more eyes on the manuscript. They tend to catch things that have blended into the scenery for me because I have read this stuff so many times by now.
It is, of course, never too late to become a test reader!
I am considering putting some excerpts up on the blog, but I'm not sure how that works vis a vis the submission process-- I don't know if it would affect my chances of getting published. I will have to look into it. Dear readers, do any of you know?
So far I have managed to cut 3033 words from the manuscript and I don't miss any of them. I've only been cutting things I'm 100% convinced are extraneous; I could probably cut more in the long run, but I'd have to really start thinking about what I was doing. I don't want to cut too much and leave the text feeling dry and anemic.
I have been getting some great feedback from my test readers. It's so helpful to have more eyes on the manuscript. They tend to catch things that have blended into the scenery for me because I have read this stuff so many times by now.
It is, of course, never too late to become a test reader!
I am considering putting some excerpts up on the blog, but I'm not sure how that works vis a vis the submission process-- I don't know if it would affect my chances of getting published. I will have to look into it. Dear readers, do any of you know?
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