Thursday, May 10, 2012

DANCING THROUGH THE PAIN







All dancers are concerned with their overall technique and stage presence, and aside from that, many are also obsessed with their age, weight and looks. For professional dancers, this is normal. Older dancers are often worried about “aging out” of their youth-oriented profession, and physical appearance is an obsession with even young, slim and gorgeous dancers. But in the dance community as a whole, any sort of injury or physical limitation is really the big elephant in the room. Everyone knows it is there, but nobody really addresses it since dance is not just an art, but a physical activity.

Essentially, dancers are athletes… but unlike other professional athletes, most dancers do not have a large commercial enterprise behind them, and therefore, do not have the advantage of having a team of highly trained healthcare professionals at their disposal. keeping them healthy, functional and pain free.

Dancers in general have a higher than usual tolerance for pain- ask any dancer about this and they will tell you that repetitive stress injuries or routine complaints like strained muscles, sprains, tendonitis, shin splints and the like have not kept them sidelined. The show, after all, must go on!

Because this profession has such a short life span compared to other artistic disciplines, and because dancing professionally- in any genre- is so competitive, there are some pro dancers who work while seriously injured, rather than admitting their infirmity openly and facing the very real possibility that if their health issues became general knowledge, they might lose their livelihood. For other performers, the need to dance is so unbelievable strong that in spite of chronic pain or any sort of ailments, they need to dance to stay sane.

This article is the first in a series I’m doing on about dancers working through physical limitations. It is my hope that these articles will help other dancers -or civilians- that may be going through similar experiences.The focus of this article is on professional dancers with Fibromyalgia.

For those unfamiliar with this disease, Fibromyalgia affects millions of people, with the overwhelming majority being women. Doctors are still confounded by this complex and multi-symptomatic malady, and often it is extremely difficult to diagnose. It often manifests suddenly after a physical trauma such as a car accident, surgery, or major illness, but in other cases, the symptoms gradually accumulate over time with no single event triggering the onset.

The most obvious hallmarks of this “invisible” disease (sufferers often appear to be completely healthy) are chronic widespread musculo- skeletal pain and debilitating fatigue due to disordered sleep. Research suggests that Fibromyalgia causes this pervasive pain, hyper-sensitivity little or no sleep because the way that the neurotransmitters which processes pain signals in the brain has gone, for lack of a better word, haywire.

Many FM sufferers also have at least some of the following: tension headaches and migraines, TMJ (jaw and facial tenderness) sensitivity to sound and light, irritable bowel syndrome, sleep apnea, systemic candidaisis, cognitive and memory problems, numbness and tingling in extremities, digestive problems and nausea, endometriosis and painful periods. There’s also a whole boatload of other really fun symptoms, too.

Not surprisingly, anxiety and depression are common in Fibromyalgics… but who wouldn’t have either of those after suffering with the all the rest of those symptoms?

May 12, 2012 is Fibromyalgia Awareness Day…. and it also happens to be World Belly Dance Day. Because of this crazy coincidence, I decided it was time to come out of the closet: I have Fibromyalgia.

I was diagnosed in 2010, a year and change after I sustained a severe whiplash and multiple herniated discs in my spine from an auto accident. An SUV plowed into my car when I was at a full stop, and the impact on my vehicle was so intense that my glasses flew off my head and two cases of liter-sized water bottles literally jumped off the back seat. I actually thought there had been an explosion in the nearby high rise building!

Aside from being sore all over, my neck and back were way beyond being “ all jacked up” and I began having constant headaches that were so intense that they made me vomit. I began treatment immediately, from a conventional doctor and a chiropractor, went through MRI’s, X-Rays, two courses of physical therapy, and had regular massages and acupuncture. There was a bit of improvement initially, and then my recovery hit a plateau. Still in pain at a time when most people are judged to be recovered, I eventually got the go-ahead to get back to my dancing from both my doctors.

Nine months later, I was exhausted all the time, and still in constant pain, but it had somehow morphed into worse pain than I had ever experienced from any previous injury, or from the car accident itself. At first I attributed this malaise to my hectic performing and teaching schedule and jet lag. I thought I was being a baby and I reminded myself regretfully that I was no longer twenty…. or even thirty five!

Pretty soon it became clear that something was definitely wrong with me, but I couldn’t figure out what. Every day I felt like I was ninety years old, stiff and sore; I had pain when I hadn't even worked or exerted myself, and sometimes I actually couldn’t access my usually very extensive vocabulary! Though it had always been extremely easy to convince myself that I actually needed another costume, I was having a really hard time convincing myself that “old age” had seemed to come on so alarmingly quickly and thoroughly. When my hair started coming out in clumps, I began to get really freaked out. So on a mid-summer break in my schedule, I went to my general practitioner to see what the hell was up.

“ I feel like total crap all the time…. I can’t sleep, everything hurts. and now my hair is shedding … Test it all!” I barked to the doctor,

“Is it my thyroid, am I anemic, is it lupus, adrenal burnout, hypoglycemia, mononucleosis, diabetes, tuberculosis , a vitamin deficiency, am I in menopause? ”

Nothing is wrong with you, the doc said. Apparently, I was as healthy as the proverbial horse, and he added that I was not only absolutely fine, but also in great shape! How can you dispute a barrage of medical tests that prove you're "normal"? I decided to tough it out, suck it up and manage as best as I could.

Six months later, on a holiday break from dancing, I was still feeling like ten pounds of shit in a five pound sack, and in order to avoid getting addicted to painkillers, had been taking so much aspirin and ibuprophen- just to function- that my mouth now had an odd, toxic, metallic taste. I stopped the drugs immediately, and then actually went through withdrawal symptoms! The last straw was the day I woke up feeling like someone had clubbed my elbows with a baseball bat, they were swollen and hot, and hurt like hell. My hands were numb, I could barely move my arms, and it was difficult picking up my purse, let alone driving to the doctor’s office.

This time, after more blood tests, examining my arms, and poking me in my chest, back, and legs, the doctor told me he believed I had Fibromyalgia, and sent me directly to a rheumatologist.

Bingo!

I began doing research to find out as much as I could. Everything I read on the subject described exactly what I was going through. Some people close to me mentioned that maybe I should start considering a different career, that maybe this was a sign I should quit dancing. I was really scared, but vowed that this disease wouldn’t get the best of me. There was no way in hell I was going to stop dancing!

The standard advice for Fibro patients seemed to be eat healthy, and try getting a lot of sleep and even a just a little exercise. Since I was already eating clean, taking supplements, resting as much as I could and dancing for hours a day, I was kind of disgusted, and deciding I needed some firsthand advice, I joined some online support groups to see what other people with FM had to say.

While I was relieved to know I wasn’t aging prematurely, and that there was actually a valid reason for my body aches and exhaustion, I was absolutely horrified at what I saw in the chat rooms! The people in the forums were in such severe pain that they couldn’t get out of bed in the morning; some had lost their jobs, some were having a hard time taking care of their kids or even doing every day tasks like laundry or shopping…many seemed to have simply given up hope. I got scared.

Knowing that everyone has different experiences of pain and that no two bodies are the same, with some trepidation, I posted on the forums asking if anyone there was a professional dancer or athlete. Crickets. I posted again, and again, and still nothing. It was unbelievable. I got even more scared at that point. Was this what I had to look forward to?

I didn’t want to become a hopeless case like many of the support group people, and I certainly wasn’t going to let on to anyone in the dance community that I was not “just” injured, but diagnosed with an incurable disease!

Isolated and alone, I was definitely starting to see really quickly how depression could play into all of this…until I found Jolie Roberson, Saahira Ruhi and Kamala Almanzar. These strong, talented and amazing women are all professional belly dancers, and have all had Fibromyalgia for years. They all teach multiple classes, and/or are dance studio owners, and they travel for workshops. Uniformly, they’re a perfect example of the old adage “Where there’s a will there’s a way” and they all prove without a doubt that anything is possible.

I hope their stories are as inspiring to you as they are to me!

Jolie was my sole lifeline at first- the only other dancer I’d heard of who had FM. A mutual friend told me to call her, and when I did, out of the blue, she graciously stayed on the phone with me for over an hour, patiently answering all my questions, listening to me venting my frustrations and fears, and helping me become acclimated as a terrified FM newbie. Since then, we have become friends.

A lifelong, classically trained dancer, Jolie Roberson is absolutely gorgeous- lithe and supple, with huge aquamarine eyes. Eight years ago she began performing Tribal Fusion, which she teaches in Tucson, Arizona, where The Skirt Full Of Fire dance studio she owns –and her dance company of the same name- are based. Aside from all this, she also does graphics and is professional make up artist and hair stylist, working at weddings, parties and photo shoots.

Jolie’s belly dancing is lyrical, athletic and precise, infused with everything from ballet to hip hop, and done with impeccable execution… to look at her on stage, you would never imagine that she was hurting. See her in action at Levant Al Sonora’s big belly dance event Desert Shakedown, November 10, 2012, in Tucson.

Twelve years ago, as a teenager, Jolie was in a car accident. Shortly after, she was diagnosed with FM, and her life was irrevocably changed.

“I felt hopeless,” she says, “ As a dancer, you are accustomed to all sorts of physical issues, but the pain I felt with the Fibro was so intense and constant, it was hard to hear that there was nothing I could do to fix it. For the first year of my Fibromyalgia, I was, essentially, bed-ridden. I was on muscle relaxers, pain meds, anti-anxiety meds, and was treated with local anesthetics and electroshock therapy as well as physical therapy.”

Tongue in cheek, she confesses to having an imaginary dance teacher in the back of her mind, someone who is waiting to smack her with a yard stick if she doesn’t do everything to the best of her ability.

“It got to a point where the treatment was worse than just accepting the illness”, she says,

“ So I removed myself from all of it and started dancing and doing yoga again. I would say that my pain is at the same level as when I first was diagnosed, but that my capacity to understand, accept, and move with it has grown enormously.”

Jolie describes her pain as feeling as though she’s constantly recovering from a vigorous workout, with extremely sore muscles in the back, hips and legs. She likens some of the sensations to arthritis, with joints that are inflamed and stiff. And when her symptoms flare, she experiences what is known as “Fibro fog”:

“When my pain levels are really bad, I have a hard time recalling words and keeping up with conversation.”

A self-described Type A personality, and, as she puts it “stubborn as hell” Jolie is also a fighter:

“I’m not all about letting something beat me and that’s what is keeping me motivated past my pain. Find what makes you happy, find what gives you fire and energy and do it. That’s what will keep you moving. I create each and every day, take classes, exercise, and do things that make me happy. Even if you only have an hour to give yourself, do something that makes you happy and do away with unnecessary things that cause you stress. Remember that your stress levels affect your symptoms."

She continues,

Just don’t stop. Ever. Don’t let it win. We all have obstacles in this life, but it’s how you choose to face them that will determine where you go. Find your passion and follow it, no matter what. Remember that you aren’t alone in this and reach out for support when you need it. “

Jolie’s website: http://skirtfulloffire.com/

Kamala Almanzar from Alta Dena, California is a performer, choreographer and teacher, with many weekly classes in the Los Angeles area. A devoted wife and mom, she often accompanies her daughter to gymnastic meets, as well as traveling to teach belly dance workshops, most recently, last week at Floralia in New Mexico.

An exquisite Egyptian style dancer, her elegant dancing shows the influence of Mahmoud Reda, but her sassy personality, unique fusion movements and quirky sense of humor show through as well. Many of her students have become champions, and she has also mentored many professional dancers, including me- I consider Kamala one of my “dance moms”.

When I heard last year that she had Fibromyalgia, I was shocked. Having known her since I was a baby dancer, I never would have guessed that someone who was as vital and on the go as she was had anything even remotely like that going on. A popular club dancer since the American Golden Age of cabaret dancing in the 1970’s and 1980’s, she also appeared on many television shows during that time, and frequently writes about that time period for online belly dance magazine www.thegildedserpent.com. During the ‘90’s, Kamala appeared regularly at restaurants and was co-director of Flowers Of The Desert Arabian dance Company, who gigged relentlessly.

Today, Kamala shows absolutely no signs of slowing down. In addition to her teaching, she sponsors several well-known dancers in workshops (upcoming events feature Aleya of Cairo and Sahra Saeeda) and she is furiously at work on the second show in her “Choreographers Collective “ series, which will take place August 11 & 12, 2012.

Kamala was diagnosed with Fibromyalgia in the late 1980’s, so she has had it most of her career.

“At the time I was diagnosed, there was really not much information about it, so I was just happy there was a name for all the aches & pains!” Kamala says,

“I didn’t realize it could be very debilitating for many people. I have been pretty fortunate, because for a long time I have had minimal pain… I’m knocking on wood…One issue I have often, though, is costochondritis, which is an inflammation in the rib cage area. I now avoid stressful upper body movements…. So rib cage circles and pop locks have gotten cut- but I’ve never had it stop me from dancing!”

Like Jolie, Kamala is also quite driven, and believes that dancing has not only helped her deal with the disease, but is her raison d’etre.

“ I actually think it’s a mind thing - because I have no choice - I have to dance! And nothing will stop me, so it’s not an option I will consider. And I find I do feel better after dancing. I hear of people who can barely function… and here I am dancing all the time. Now, when I’m teaching I stress using the abdominal muscles & glutes to generate the movement and strengthen the core.”

Her advice to anyone- but especially dancers- with chronic pain:

“ As the mother of a gymnast, I can be a real tiger mom when it comes to getting the most out of doctors - so I say be aggressive getting the appointments and answers you need from doctors. You can still dance and have a full life and have manageable pain. Don’t let anything stop you!”

Kamala’s Website: http://www.kamaladance.com

Saahira Ruhi and I first met at a belly dance workshop I was teaching a couple of years ago. It was, as they say in the movies a “cute meet”… at least when you put Fibromyalgia into the mix. She nonchalantly pulled out some hot pink athletic tape out of her dance bag, and it caught my eye immediately! At the time, I had no idea that I had Fibromyalgia, and of course, it didn’t come up in our conversation that she had it, either… but it figures that a belly dancer who was in chronic pain would find the coolest athletic injury “accessory” around, right?

Her graceful, traditional belly dancing and her ironic sense of humor initially struck me. I later found out that we shared a passion for rock ‘n’roll, and also that she was a single mom for years… and that twenty years after she gave birth to her first daughter… she had her second! And of course, when I found out that she had Fibromyalgia, we bonded heavily over that.

Saahira’s eyes are kind and welcoming and she most definitely has a Goddess vibe around her- she is one of the most spiritual, gracious individuals I have ever met. She is the creator of the collective Women Creating Peace, and she recently opened her own studio, Body Temple-Life Arts Center in Riverside, California. Along with belly dance classes, the Body Temple features other forms of movement and spirituality, including Tai Chi, workshops in psychic development, drumming classes for adults and kids, henna, Reiki and much more.

Though Saahira studied ballet as a child, she never dreamed she’d have a career in dance that spanned over two decades. Twenty-three years ago, at the age of twenty-six, she was diagnosed with Fibromyalgia.

“I felt emotionally crushed and hopeless,” she says,

“ I just worked, parented, and sat in my recliner waiting for bedtime. I had stopped doing everything that gave me pleasure because it all hurt too much. It was a pretty sad time for me. I thought about dying a lot. I wanted to know what I was being punished for.”

Saahira’s pain was always relentless. She says that she has maybe three days a year when she wakes up feeling refreshed and pain-free, and considers those days to be holy. Her body constantly has an achy flu-like feeling, her joints become inflamed after any sort of physical activity, and she has a lot of trouble falling-and staying-asleep. She struggled with depression. Irritable bowel syndrome, and an inflamed chest wall that lead to pneumonia.

But three years after her diagnosis, Saahira’s life turned around.

“ I saw this older, heavier woman belly dancing at an event and fell in love with the dance. I saw her take the stage and then transform thru the dance. I began studying with her and drove into Orange County every Thursday night for class for years. At first it hurt so much...but then the pleasure to pain ratio went in my favor. I lived for those Thursday night classes. I began performing and my self-image changed form being ‘handicapped’ to being a beautiful, exotic dancers. I started sleeping better and felt better in general. My dark mood lifted and I’ve been dancing every since.”

Though dancing may not have healed her pain, it has healed her emotionally, and she often ruminates on dancing with deep gratitude.

“ I’ve had Fibro for over half of my life now, arthritis of my neck and spine, and several injuries… and all I can say is never give up on your dreams! When it hurts too much to dance in my body, I dance in my heart. Do what you can. Even if it means sitting in your recliner for the day and doing wrist circles. Notice how graceful your hands appear. Look at all you can communicate thru those hands of yours. Remember and connect with all the wonderful things our women ancestors hands have done throughout the ages. You have this power. Create your own reality and dance!”

Saahira Ruhi’s website: www.bodytempleriverside.com

Saahira’s blog: SaahiraRuhiDancingtheDivine@blogspot.com/

***

If you have Fibromyalgia, suspect you may have it, or have a loved one who does, here are some resources:

WEBSITES:

http://www.fmaware.org

http://www.afsafund.org/resource.htm

http://www.webmd.com/fibromyalgia/guide/fibromyalgia-resources-index

BOOKS:




***
Photos, clockwise; Kamala Almanzar, Jolie Roberson, Saahira Ruhi

15 comments:

  1. Thank you SO MUCH for this! I was diagnosed in 2002 after surgery. At first I gave up everything, but like you, soon the treatment was worse than the illness, so I also stopped. I figured my dance life was over, so I opened a studio. It closed after a year, but I made some wonderful friends, and decided to start taking classes again just for fun. I told the teachers I might have to sit down during the class, and they were wonderful about it. After the first couple, I never had to sit down again! Doing yoga in the morning has been a lifesaver. I can't really fully get into most positions, but I go as far as I can and hold it. It's very nearly a miracle!

    I'm from Phoenix and saw you perform at the Levant al Sonora show, and was already looking forward to seeing Jolie - now I'll definitely have to try to talk to her!

    Thank you so very much. Every time I hear from someone else, it inspires me that much more. I'm going through sort of a rough patch right now, and you're lovely words were just what I need.

    Shirley Runyon

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    1. Hi Shirley!!
      So glad you haven't given up! YOU are inspirational! Share your stories with others, because there are so many people --dancers too-- in chronic pain, we will never know unless we open up about it!!
      This needs to be on the table in general for those with temporary injuries... but definately because there are so many dealing w/ chronic pain and feeling hopeless about it! Thanks for writing back, and keep on RAQIN'!!!!

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  2. Thank you soo much for this article! I'm a migraine sufferer and if it's not a migraine I'm always hurting from my back, neck, ect. Something is always hurting. My friend emailed me last year some information about FM, saying that I should look into it cause I had a lot of the symptoms. I still haven't gone to the doctor because I was afraid of being diagnose with this. Weather its FM or something else I have, this article has given me hope! I'm a newbie dancer and it gets to me when there's so many things I can't do (like back bends and hair toss) due to the pain I'm always in. But I'm so glad I read this, and I know that I can't give up and I just need to keep learning and dancing! :)

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  3. Hi Jacki,
    So glad that this article has inspired you!

    It does sound like you may have Fibro.... try to find out if you do! It's not the end of the world, even if you don't have it, being proactive about your health will help you to live better & manage your symptoms! DONT STOP DANCING! If you have any questions, please feel free to email me: princessraqs (AT) gmail (DOT) com I'd be glad to talk or type w. you!

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    1. Thanks so much for writing this. I am an a level dance teacher (head of subject in a single person department.) my drive to and from work is around 2 hours per day and I was finally diagnosed with FM as a single parent in 2010 after years of suffering. I now am married and have a baby and the stress of work, the drive, the FM, the lack of sleep, my decreasing weight etc are resulting in me really struggling lately. Feel like I'm very much on a downward spiral and no one seems to understand the full impact of FM. Hoping my marriage can survive. I can't afford to quit my job m. Feels like there's no way out sometimes. You're inspirational x

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  4. Oh My God. You may have been talking directly to me in this post. I was diagnosed about 18 months ago, after repeatedly being told "you're fine" or "it's all in your head". I had been belly dancing for about 10 years at the time (but never professionally) and was in so much pain I just completely stopped. I am a mother and work more than full time on top of everything else, so....what do you do when you're exhausted and hurt like hell and starting to get pissed off at everyone and everything for not understanding?
    I just took myself off of the "last hope" for pain treatment....my doctor's solution was a series of "long acting" morphine-based drugs. Coming off of those was HELL! I'm kind of stuck now....

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    1. Hey there Ash,

      I'm so sorry it took me this long to get back to you! : ( I think that for dealing with the way others perceive you, you just have to "rise above" whatever their thoughts or comments are and do whatever you need to do to take care of yourself... without feeling guilt for babying or pampering yourself- even if it's just for a few minutes! If you would like to continue this conversation, please email me: princessraqs ( at) gmail (dot) come.
      Lots of love to you!

      Delete
  5. Thank you so much!!! I have avascular necrosis of the femoral head and there are days I can barely walk--but it is because of my need to dance that I take those painful steps anyway!

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    1. Hey Kali,

      You are so welcome!

      It sounds like your love of dance is winning out... you can do whatever you need to do to keep yourself dancing, and I admire that so much. Remember to take care of yourself and your body though.... because we only get one! Best of luck to you and virtual hugs!

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  6. I also have had similar experiences to those above. Years of headaches, chronic fatigue, muscle and joint pain and various other random symptoms. Eventually, mainly through my own investigation, I was diagnosed with M.E. and/or fibromyalgia (they weren't sure). I was told that I should "budget" my energy and not do too much. I even gave up work at one point. After a while I began thinking that inactivity was just making me feel worse so I decided to try belly dancing. I'd seen a demo in my local shopping centre and thought it looked fun. My doctors were not keen and told me I should just do 10 minutes to begin with. I thought "nuts to that, I'll listen to my body and do as much as I can!" At my first class I told my teacher Charlotte (Desorgher) about my condition and I did have to sit down a couple of times but I made it through the whole hour. I kept at it and have gradually seen great improvement in my strength and energy. 3 years on I'm obsessed and train around 7+ hours a week. I work full time (almost) and feel great. I still have fatigue and pain but I don't let it beat me. I have found life again. 


    I wish I had known about your own situation when you came to the UK a couple of years ago and I attended your workshop. It would have been great to talk to someone who was going through a similar experience. At least now we both know there is hope and doing something you love can be its own therapy.
































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    1. Hiya,

      Sorry it took me a while to see this comment!!!! I will be in UK in 2013 for Majma, march 1-3.... if you are coming to that festival, WE NEED TO HANG OUT && COMPARE NOTES!!!

      Let me know, email me through princessfarhana.com, or on my facebook page. Even if you aren't going to Majma, maybe we can meet up!!!!

      Sending hugs!

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  7. Thank you for this. I am only sorry I didn't read it sooner. You are brave, awesome and inspiring! It's wonderful to read that you've already helped some women connect, express and keep moving!! xoxoxoxo

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  8. Thank you SO SO much for this! I'm used to being a very hyperactive and physically active woman-on-the-go so my recent diagnosis of FMS is a very difficult pill to swallow and sad to say, thus far many of the support groups have actually intensified my fears and increased my despair. This has been one of the very few inspiring "life with fibro" pieces that I've read. Thank you so much for putting it together and sharing your inspirational story and the stories of these phenomenal women.

    ReplyDelete
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