The Death of a Dancer – Who am I?

 

I was born a dancer. Well, I guess I was born a little girl who liked to move then I became a dancer. As a baby, music soothed me and I loved to wiggle and move. My mother remembers me spinning and twirling around the house to any music that was playing on the radio. When I didn’t have music, I would sing and hum to the rhythms in my head and the songs I would make up in my heart. I loved to move my body, dance in circles, and I felt like I was flying. Most of all, I liked making people smile and laugh and being the star, which seemed so easy to do. I didn’t just want to watch the ballet; I wanted to be the ballerina. I would put on a play in the living room or a dance recital in the backyard. My creativity and my imagination was the world I liked to live in.

I grew up dancing. I would leave my normal elementary school and go straight to ballet class or theater rehearsals. Other focused, passionate people surrounded me, and my energy seemed to flow and bounce off of them. I was always around adults who wished they began their passions younger. I was young and couldn’t wait to grow up.

It felt like I was most at home when my hair was tied up in a bun, and my body was in pale pink tights and a black leotard. My favorite part of any class was stretching at the barre. I liked to feel every part of my body, every muscle become warm and slowly awaken for the dance. Starting at my toes and carefully working up to my head and neck, until every part of my limber body was ready, I would take my time, like I was fine-tuning an instrument. Then, I would push myself further during every class, whether it was stretching my leg higher or bending my back further, I always wanted to be the best. I was thin and my body was toned, muscular and beautiful. I had the look of a typical ballerina that you might imagine petite, lean body, long hair and pink pointe shoes to complete the picture. I was most comfortable and at home when I was in movement, and I was happy when I made others happy.

I first knew in my gut that something was wrong when I was attending the Fiorello LaGuardia High School for Performing Arts in New York City.  I would find myself getting hurt so easily, or getting bruises from the simplest touch. I had sprained ankles, wrists, and sore joints. My peers weren’t getting hurt and didn’t complain of the same aches and pains and I felt “different”. I wasn’t just tired; I was exhausted and couldn’t regain energy.  I knew I couldn’t possibly be this clumsy when I was trained for grace and style. I soon required afternoon naps or at least, bed-rest everyday. I found myself requiring assistance with simple chores I had always done on my own. I couldn’t even walk far in between classes.  I used to be a ballerina, and soon I could barely walk and had to use a cane and joint braces to move around. I felt as though the body that used to work like a well-oiled machine was quickly deteriorating with creaks, and cracks with every step.

Deep in my soul, I knew something was seriously wrong, beyond normal “growing pains”. We went to any doctor or authority we could see and everyone had different diagnoses that involved different treatments, each one scarier then the next. Either I was “too young” for certain diseases or “too old” for others. I didn’t fit the mold, I broke it. We looked for divine guidance from doctors we put on pedestals like gods.  What happens when you put your lives in the hands of people who are just doing their best, and their best just isn’t good enough?

My most unpleasant experience was when I was told I was too pretty to be sick and maybe I was looking for attention. I never felt so hurt in my life; it cut at the core of who I was as a person. I am not perfect, but one of the characteristics I am proud of is being a brutally honest person and I was being truthful about my pain. The first man to break my young heart was a doctor, we were at the famed Mayo Clinic Hospital, and I will never forget him.  I wanted to scream and explain how I could get attention in a multitude of positive ways through my dancing and theatre, why would I want to make up something this painful for “negative” attention? Why would I want to stop everything I have known and enjoyed my entire life? I will never forget the power this doctor had over me to question myself, who I am and doubt what I knew to be true.

Eventually I received proper diagnoses, after many trying years of not knowing what was truly wrong with me. Although the last thing a person wants to hear is that they have an incurable chronic disease, I actually was oddly happy and relieved to finally have validation that it was not all in my head. I was glad to have a treatment path, and something to work on to try to get better and seek remission. Like everything else in my life, I needed a goal to achieve and I couldn’t attack this illness if I didn’t know what it was. I was told I needed to stop dancing professionally; it was causing too much harm by continuous pressure and stress on my joints, I was living in excessive pain. I understood why the doctor gave that medical recommendation, but I couldn’t help hating him for it. He was the unfortunate bearer of bad news, and I wanted to beat him up and hit him with everything I had in me.  I went from a cheerful ballerina to an angry young woman. I didn’t take the news lightly. I felt like everything I worked so hard for was ripped away from me and I was so lost. Instead of dancing physically, I was frozen, and emotionally I was dead.

Soon, I learned a new kind of dance. The dance between doctors, medicine, and pain is a hard dance to learn. You are forced to learn to juggle appointments, dance around awkward stares and questions, and spin circles around insurance forms and medical jargon. I practically had to learn a new language between new medical terms, and technical names of medications. You have to grow up very quickly when you get sick young, take on responsibilities that you don’t want, and learn the ugly truth about things you would rather run from. Your parents can’t protect you anymore; you have to face the truth and reality of unpleasant situations. You are forced to say goodbye to your innocence and childhood very quickly. You don’t get a standing ovation for learning the dance or “bowing goodbye” to your childhood.

I also had to say goodbye to the dancer I once was. I had to mourn the loss as if it was a death. I cried enough tears for every dance step I learned to perform. I cried, I grieved and to this day I reminisce. I have memories of a time I cannot bring back. For years I tried to pour myself into different hobbies or interests. I didn’t know what to do next. If I couldn’t be what I wanted to be, then what did I want? Maybe I was in denial, hoping it would just go away. Maybe I was scared to try something new, thinking that once I loved it or became good at it, it could be taken away just as dancing had. Maybe I just didn’t know where to begin all over again. Is it a mid life crisis at when you are sixteen? How does one start all over when she doesn’t want to?

I was always in control of my own body. I watched as my body became something so far removed from what it was it seemed foreign. I went from having a body that moved in any beautiful position I desired with poise and agility, to having a body that was achy, stiff and weak. My joints slowly swelled up and didn’t want to move, and I went from having enough energy for dancing 8 to10 hours a day, to sleeping through those hours and wishing for more rest. The hair I loved started to fall out in chunks because of treatments for this new disease, and maybe even from the disease itself. I had to cut it short to help mask how sick I had become, and to always keep up the facade of “not looking sick”. I lost the muscle tone I once had, and I stared in the mirror in disbelief at the woman I had become. I had fevers, gained weight from medication, and occasionally even had the so-called typical Lupus rash on my cheeks. Friends and family would tell me how they barely noticed a change or some even said I looked better, how I went from looking anorexic and too thin to curvy. I guess there is never a “happy medium” when it comes to body image. This didn’t make my own body evolution any easier. I naturally felt as though they were lying to me. I was the only one who had to like what I saw in the mirror and I didn’t. I went from having the body of a child to having hips, breasts and curves. Understandably, most girls my age would be thrilled with these womanly changes, but since I was used to a lean dancer’s body, this was far from what I wanted. I didn’t know how to dress, how to walk, how to move. I hated my own skin. I had to find myself all over again. But who did I want to be?

After a recent birthday, I had the sad realization that I have now been sick longer then I have been healthy. Although I can remember dancing and living that lifestyle, I feel like I am talking about someone else. I look at pictures of myself and “she” looks so different than I do now. I can’t even remember the memories that caused the smile on the face of the girl in the pictures. There are times on my good days when I feel the spirit of the dancer inside me, but it is like a ghost of someone I once knew. Sometimes I try to laugh and say” that was my body before my body got old”, but I secretly cringe at the thought of the life I lost. I can’t even remember what it is like not to be sick; this is now all I know.

In my mind, I still dance. I can picture myself and the memories are like faded black and white photographs of someone I once knew. If my mindcould only force my body to do what it cannot, but it is living with a disconnected heart, body and soul. My heart wants one thing, my soul dreams of another, and my body is left helpless. The dancer has died.

I try to find a new life for my creativity. I find solace to think that I now dance with my words, and still effect people. I like to put a smile on people’s faces. I may not dance with my body, but I use my voice when I speak, my imagination and mind when I write, and my passion and soul when I advocate.

I am trying to find my new self. The dancer may have died, but I am still here.

Essay written by Christine Miserandino for butyoudontlooksick.com
*note: pictures in essay are not of me personally, those are in a box to save where memories go.
©2019butyoudontlooksick.com
  • Renee Turner

    You’ve left me suddenly – – well — “leap-shocked!” I’m older, the causes of my physical limitation of a different origin — but … you are me! It’s horrifying to realize that thing in the mirror (on the days I can get to a full mirror) has to be me. It CANNOT be so. That fat-roll laden bag of skin with no musculature at all, that thing which can barely stand or hobble; it isn’t me. It’s never been me! I had NO MORE HOPE that anyone could feel as I do. Everyone telling me I must be lazy, I have to “use it or lose it” repeated over and over until I almost believed it. God, himself/herself, knows I wanted to. I KNOW HOW TO WORK MY WAY OUT OF THAT HORRID HOLE IN THE SOUL! Yet, all those people, the hundreds of voices; they were so wrong. In my saner moments I wanted to shout and scream that all of them together had spend more lazy weeks than I had spent lazy MINUTES! Most people have absolutely no notion of how to begin to comprehend how hard I’ve worked all my life at the Ballet Barre (my speller keeps turning it into my husband’s name), mid-floor, the insane things I’ve taught my body to do for choreographers, for teachers, later; for my own enjoyment and sanity in my home studio. LAZY? They’re too lazy to listen. Use it or lose it? They need 30 minutes on a treadmill. The real me gets so bored on treadmills I Dance on them as they whirr faster and faster beneath my feet — for HOURS! But that was the other me, the real me. Now I’m merely a casualty of failed bilateral Tibial Nerve Impingement release surgery. I’ve been bed-bound for months. Miserable. Spending a day’s energy trying to hide the fact that I no longer have a will to live. I can’t imagine how I’m of any use to anyone; this gimp, this fat weakly and sickly freak! Yet, my own Spiritual beliefs won’t allow me that easier way out. I’ve spent the equivalent of months, if not years, searching for any potential roadmap back to myself. It doesn’t exist. I, too, must find a new definition of “me.” But they all seem so trivial, so WEAK, so ugly. Dance is JOY, FREEDOM, PURE EXPRESSION OF LOVE, A FORM OF WORSHIP OF MY CREATOR, A SEDUCTION OF MY HUSBAND, SOMETHING TO TEACH CHILDREN AND GRANDCHILDREN. Nothing will replace it. If and when I find an answer, or at least a roadmap to an answer, I’ll post it: LOUDLY PROUDLY! And hope it helps someone. You’ve helped me to feel less the fool, less the freak, less alone, less lonely. Thank-you beyond words. (We both know how I wish to thank you, and if I ever can create a video of even the shortest piece of “Peace and Thanks” I will surely do my best to see that you get it. from Loud -and far less proud; Renee

  • westomoon

    Christine, what a moving piece! I gave up serious dance in my teens when I grew to be very tall and big-busted, but I kept up the exercises for most of my adult life — they invoked the old me and were my daily refuge.

    I’m amazed that so many of us have been dancers. I want to ask everyone — can you still do stretches? About 15 years ago, I suddenly couldn’t bear to — and I think it might be because I’ve become so afraid of the new kind of pain lupus has brought me. I mean, every dancer knows how to live with pain, but I’ve become terrified of it.

    Any suggestions? Has anyone managed to still maintain their dancer’s body, even just a little?

    P.S. I get neuromuscular therapy (highly recommended!) from a very wise practitioner. Every now and then, he’ll remark that he can tell I was a dancer, because my body (which now resembles a troll more than a ballerina) still retains the old grace of movement when he works on it. We take our comfort where we find it, I guess — those words have been a weird sort of lifeline for me. I sure don’t feel like a dancer any more, but it’s awfully nice to know there are still traces of it left.

  • Annie

    This brought me to tears because this is exactly what is happening to me right now. I’ve been dancing all my life but I just recently found my dance niche. I fell in love with hip hop and I’ve been taking as many classes as possible. I’ve been living with lupus for a couple years now but it never truly hit me on how much it affected me as to when I attended a workshop day where 3 different choreographers came to teach and after the first class, I felt completely drained and I was feeling searing muscle aches in legs and lower back. I tried to ignore it and push myself only to regret it the next day when I woke up dizzy and terribly frail and faint.
    I’ve always loved dance and it wasn’t until recently that I even dreamed of maybe going pro but that all came crashing down when I realized I’d never be able to keep up or go as full out as I should.
    I can’t help but wonder why we’re given a talent that we eventually can’t use? It’s hardly fair.

  • Ella

    I cried reading this. I will be turning 17 in a couple of weeks, and I’ve been sick now for almost three years. Up until then, I was a dancer too. I’ve gone through similar stages to what you did, trying to find different things to throw myself into and different hobbies to take up. Nothing is the same as dance. My body doesn’t feel the same way that it used to, not just because of the pain but because of the lack of dance. I miss it.

    But, like you, I have found one positive thing that helps: writing. There are days when I feel like I will be okay.

  • Brian Jones

    I feel your pain in very real ways. I was hit by a car on my motorcycle. I was not at fault, I was wearing full proper protective gear. In fact I was “held together by soft tissue and leather” post accident. I suffered spinal injuries including a root avulsion of the left sciatic nerve bundle, and a “Closed head injury”. The injuries and chronic pain are bad, but my worst issues are with my head. My short term memory is full of holes and I can no longer access my math skills beyond simple addition, subtraction, multiplication and division. That wouldn’t be that big of a deal if my entire life pre-accident wasn’t spent training myself to be a mechanical engineer.

    It is hard for people to understand just how much your self-image is wrapped up in what you do. To have that ripped away when it is all you ever wanted to do and have spent (in my case) 30 years honing the skill set a person is left drifting without an anchor. Ten years later and I’m still struggling with who I am. I can do NOTHING that used to give me pleasure. I was a competitive shooter, nope…chronic pain means that’s out. No pain spasms allowed with live weapons fire. Machine shop work, nope. I can’t lift the pieces of stock, have no balance, and cannot stand long enough to do the work. Welding, nope. No more contortions for me and the strobing arc can cause me seizures. Shooting pool? nope. Darts? nope.

    I tried going back to college in the futile hope that I could get an art degree or something (anything!) but my memory issues make comprehensive tests difficult or impossible. In many cases I could remember concepts, but not the term for it etc. That experiment was a failure. The most bizarre part of all of this, to me, is all of the doctors and professionals I’ve seen over the years and how many of them have told me in various ways that it’s okay to give up. How could I ever look my kids (16, 18, and 20) in the eye and tell them to push their limits if I gave up just because thing got difficult for me?

    I have a hard time getting out to do anything. A fixed income from SSDI and A supplement from the VA don’t go far when you have 2 teens in the house. Even if I had the money my mental self-image and reality still don’t match up. I don’t want to go out and make a spectacle of myself, and I have no idea what to do. I have absolutely zero interest in the things that are possible for me to get out and do on my own.

    I also don’t want to be dependent on someone else to “get” to do anything for the same reason I live with more pain than I have to because to completely erase the pain is also to erase my consciousness. I’ve been the over-medicated vegetable drooling in the corner. Never again. To that end they have installed a morphine pump in my stomach that pumps directly into my spinal column. No feeling drugged, just a reduction in pain. An oldest child that was stealing my meds means no oral (break-through) medication for me. I had to be honest with my pain specialist when that was discovered because you have to have that kind of relationship with them. So for 5 years there has been no way for me to break the downward spiral when the pains start in earnest. The pains cause me to tense up which causes more pain…you get the drill. This cycle begins and can last 96 hours or more before my body finally shuts down and I pass out. Can you imagine trying to maintain employment anywhere when you have no idea when or even if you’ll be able to work on a given week? I would not have dealt with that as an employer.

    So, 10 years later I’m still trying to figure out who is this new guy living in my body? I’ve been told since the day I regained consciousness that I’m “different”. Different sense of humor, different reactions etc. I say “have you looked at my medical record?” of course I’m different. The brain is very fragile and mine was horribly abused in my accident. Even with the worlds best super glue you cannot put that porcelain vase back together good as new. I know it’s hard, but you’ve got to soldier on. If for no other reason to show those who said it’s okay to quit that you are still a person, not a piece of furniture.

  • Alyssa Lloyd

    OMG ;( ;( ;( Christine! Cried and cried and cried reading this. My name is Alyssa, I’m 41 and live in Sydney, Australia. It is my story. Except I was 34 when diagnosed with Complex Regional Pain Syndrome from a crush injury to my right foot. I started dancing professionally at 15 and after pushing through 16 knee operations, had my final severe dislocation onstage in the musical ‘Fame’ at 27. I started teaching at 18 and loved it. I taught ballet ( as I trained right through doing RAD, my mum is also a ballet teacher), jazz ( which is what I did professionally..commercial, musical theatre stream) , contemporary, conditioning/anatomy and was VERY passionate and committed as a teacher. There are way too many people out there teaching dance who shouldn’t be, don’t have the proper training, experience, knowledge of kids bodies..etc that’s a whole other chapter! ‘Fame’ ended my dance career and I was devastated to say the least. All I could do to accept it was to be grateful I had the amazing career I had, the best opportunities and best jobs out there at the time, and the honour of being in the ‘top group’ of female commercial dancers in the country at the time. But,I still had my beloved teaching, which I thought I’d do for the rest of my life, like my mum, who is still teaching a lot at 72. Then the blow, my life pulled from under me so swiftly I didn’t see it coming. All you said about the dance with the medical industry…me too. From the beginning of your paragraph ” I also had to say goodbye to the dancer I once was…” Was SO identical, I felt it as if I had written it. ALL OF IT! 7 1/2 yrs later, having tried multiple things, nothing holds my interest remotely. I am a single mum to a gorgeous half Kenyan 11yr old son who, without a single push, is following in my footsteps. He played the role of ‘Jerome’ in the Australian Opera’s ‘South Pacific’ at the Opera House in Sydney for 2 months in 2012, again in 2013, and went straight into the role of ‘Young Simba’ in The ‘Lion King’ which he’s been doing for the past 6 months, finishing in August this year. I see him on stage and weep. He loves it so much and, as objectively as I can be, is very good. He has an amazing voice! I’m so glad we share it as he understands now, what I lost. I’m soooo happy for him, to know that feeling that only a performer/dancer/singer/actor knows, how it starts to define who you are, how it owns your soul, spirit, and how it colours and shapes the world outside it. CRPS took everything from me…everything, except him. I’ve been on disability for years as I had to stop teaching 4 yrs ago as the pain cost me too much. Like you, I grieved for my life. I was now nothing but a shell. I have things to take up my day, want to do more in advocacy for CRPS and other chronic pain diseases, possibly in the counselling area as I studied it for a while, however, had to stop as it affects my short term memory, concentration, and the ability to always absorb everything I’m learning when the pain is off the Richter scale…which is most of the time, as CRPS is the most painful disease known to medical science. I have it in my right foot, ankle and lower leg. Which somehow feels like a betrayal, as my feet were my livelihood! Thank you so much, from the bottom of my heart, to know I’m not alone in my story. I’m so sorry this happened to you, I can honestly say ” I really DO know mostly how you feel!” You’re doing a brilliant job Christine, keep at it.if you ever want to contact me I’m on Facebook. Take care beautiful soul. Thank you for sharing. Xxxxxxxxxx 😉

  • suej

    Beautiful, powerful and so very, true, We will always be dancers, in our hearts and our hearts and the thoughts that pour from them,make us strong enough to change our choreography..we learn to accept the changes, which in turn, give us the courage to move on and remember our past dances with a smile..not missing who we were, or what we could do. We are also blessed with the knowledge thar time really is precious, not a cliche to 6s..but a truth. ITS NOT EASY TO ACCEPT CHANGE, NOR IS IT EASY TO BE UPBEAT ALL THE TIME…but it is very easy to smile and once you learn to hold tha5 smile, not only on your face but in your heart…life will become beautiful again. Trust me..I hear you all. Thanks Christine! Suejxxxxx

  • Nancy

    OMG, I can’t believe this! I am also a dancer and in my mind I still am! I will watch dancing with the stars or any show with dancing and I get up to dance for a few seconds… its very frustrating because I cant do it but I still try… its strange to think you can do something but you can’t… I have a hyper dog that keeps me from getting depressed in these times. I wish us all a complete healing in the coming year,,, HUGS

  • Mrsleigh

    Reading this the sense of being alone in this world faded away.
    I grew up dancing, it’s the only thing I ever knew or wanted. I danced professionally for a very short while as my health spiraled until I could no longer handle long rehearsals and hours on stage. I then transitioned into a successful teaching and directing career. I have Lupus among about a dozen other chronic illnesses effecting literally every function of my body which have made dancing physically impossible in recent years. I slowly gave up teaching until I could no longer work even directing or in our offices and I’m now wheelchair bound. The cruelest thing my illness has taken from me is dance. It has been my support through every difficult time in life, it’s been a friend, an outlet, a passion. I’ve grieved the loss of this ability as I would a tragic death. It’s so hard to have people look at you in a wheelchair while still feeling very much a Dancer at heart. Thank you for sharing your story.
    One of life’s greatest adventures is learning to adapt to whatever circumstances roll your way. With chronic illness we get extra practice “adapting” haha!

  • Beth Rosenthal

    Hi Christine. I can completely relate. I was 11 when I became very ill, although I didn’t feel “right” by the time I was 8. I loved ballet, jazz, and gymnastics. My pink tutu was my prized possession and I did cartwheels and practiced handsprings all the time. I miss that life, that person, and just the dream of practicing and becoming better and the best. Now I don’t ever think I’ll be the best at anything. I have too many physical limitations. Also, I can relate to living as a sick person more than living as a healthy person.

    I try to remind myself there’s worse out there. That I’m still fortunate. But sometimes it’s difficult to remember that.

    Anyway, just wanted to say thank you for writing this article. It’s comforting to know other people are dealing with similar thoughts.

  • Shelby Valint

    This story is AMAZING. I’m writing a book about disabilitys. Please email me at [email protected] please so we can discuse putting your story in my book!
    I’m 13 and I actually have a disability too.

  • Jillian-Elaine Lindley

    I read this and cried because you spoke what was in my heart. I used to be a ballet dancer too and Chronic illness has stolen ballet from me, I can’t even teach anymore.
    I haven’t learnt the ‘new dance’ yet and I am fighting with the need to accept it. You have given a little hope.

  • margie

    I too danced as a child, but I knew that I was not going to be a dancer. I wanted to be the best nurse I could be. I did become a Registered Nurse, whose specialty was intensive care. It made me very happy to be able to be what I truly wanted to be. A wife, a mother, and a nurse, they filled my days with a very happy life. Then, 16years ago, it all came tumbling down. Lupus came into my life and that started the downward spiral. I do feel that I had symptoms for years, but the big flare was then. I had to leave ICU and work in a nursing home-although I did like it. Over the years,I unfortunately have developed many,many side effects from all the medicine, I have been unable to work for 9 years. The fatigue and the pain is unbearable some days, but I keep on plugging. I love my family so much and want to be with them, so I do rest when they are not home. Then I can have energy for them. It is not easy. Life does not always go the way we want, but we have to make the best of it.

  • Bedouin

    I grew up as a musical theater performer. I danced multiple modalities since childhood, sang and acted. I moved on to bellydancing as an adult and fell in love with it. Unfortunately after 10 years of that I was diagnosed with MS and the daily pain and fatigue have put a stop to all that. I can barely move most days, I can’t even clean my house. I’ve spent my entire life onstage, in movement, singing, dancing, performing, even teaching dance. I have no idea what to do with myself now. I so understand mourning my lost self. Many days I’m even too tired to sing. I never thought it was possible to BE that tired. This article really spoke to me on so many levels. I remember when I went to college and left the theater, I tried so hard to find an outlet. I did radio, TV, writing, nothing compared, then I found bellydance and found myself reinvented. Now I don’t even have that anymore. I’ve lost so much since my diagnosis, but dance is certainly what I miss the most.

  • jan shadowolf williams

    did firget to ad i aslo get boutd if tidenesd which maked me wnat to sleepa lot then i get hig h ines of power whenre i just wnat to go and tajkr on the world my mood are some what unpreacle abd the mied im make me wnat to sleep most of them time but osne times i have to forece myslef to do things even f i dint wnat toas siad keep fighuntg xx

  • jan shadowolf williams

    i love this s dancer myslef i aslo have diaties the hiden tyoe ie bi polar and copd asham half of my lungs are dead the other half are sort of fucntion have u looked into doing other forms of dance i ad peted form doing so called disco dancing invloing into belly dance croos street dance sitting down youp i cna walk but my balence is shot and i have vertigo so standing round for to long as makes me uncodeated sory bout my spelling in dyaleixc aslothou im proud to say i do have phd in history my second love now u cna stildance evn if it is only to dance for short periods like i do dont give up your dream to cointue to dance adapt it find a way even if it only ion your well daysi wish u luck joy and may god smile down and help you you are brave to write bout this

  • Anne Helen Beery

    Also, I wish you clarity in finding yourself. In finding the way you can honor your dancer self.

  • Anne Helen Beery

    Clearly so much of your story is so much of our stories.

    One part (of several) in your story that resonates with my own is the “you’re doing this to get attention” piece. In my case it was fainting and seizures but because I “was so normal” and “so smart” they “must have been faked” by me. As though getting concussions and being unconscious was fun. The worst was when I brought in the medical tests to school officials that proved I wasn’t faking and I was still dismissed. Like you, that experience still stings.

    Anyway, thanks for sharing, and a virtual *great big hug* to you.

  • frances

    What I miss most is my horse and riding and the community of friends at the barn. I never had a horse until i was 50 – it was the fulfillment of a lifelong dream. My daughter and I shared the love of horses. For a long time I thought about how great it would be when I could ride again and now I don’t think that way. I am undiagnosed. this has been going on for 4 years -or more? It is hard to pinpoint when it started. I did therapeutic riding but then that became impossible. I tried to block out the anguish I feel or felt over losing my most favorite thing and yet, when I think about it now, I have to say that it is fading on its own. I haven’t found a new interest or joy in my life. Yes, why get out of bed? I do…and then what? Days are very long and i only look forward to bedtime so I can be unconscious of my life. I try and will keep trying to find a new way of living but I have a lot of anger and fear to deal with. As the article says, I am trying to find my new self.

  • Jay Chong

    No doctor should treat a patient the way that doctor treated you. Granted, they should give their expert opinion, but learning how to interact with people who are distressed should be a priority. http://www.legalmatch.com/law-library/article/failure-to-diagnose-lawyers.html

  • Loopielupie

    On my down days, I tell my husband “You don’t understand, I used to be able to literally FLY and now I can’t even walk!” I was a dancer as well. Unless you have flown across a stage you can’t know just how much has been stolen from us I suppose.

  • Alexis

    Christine, I felt like I was reading my own story throughout so many of your words. I grew up as a dancer as well and it is something that always defined who I was. Once I was diagnosed with Fibromyalgia, after years of searching for an answer to what was wrong, I felt as if my world crashed down around me. I felt I was about to lose all that I had always been. Like I’m sure you will always do, I still see myself as that dancer I once was deep down inside. I don’t think your inner dancer can ever really fully die once it has had the chance to soar as it does as you move across a stage. Thank you for now sharing your creativity through your words.

  • waynette

    I too have been a dancer, Love ballet! I even miss waitressing my butt off. I now am doing good to pick up a plate.

  • Esther Newhook

    Someone actually got our disease put into words so well that i am speechless!!!! Well done my new friend….well done!!!

  • Christine, I don’t think I knew you were a ballerina, or my brain fog hid the memory. But my story is so similar to yours. I was well on my way to becoming professional, having taken all the preliminary exams with top results and planning my future in ballet. And then my knees, at the age of 15, swelled beyond recognition or my ability to move. The doctors had no real idea what was up, (SLE) but told me, after a while, if I continued to TRY to dance they would cast my knees to stop me. I finally quit and used my youthful optimism and my Christian faith to pursue other things. Nothing was like dance. Which was my freedom in life. Losing dance was my first experience actually with grief, but I doubt anyone really knew that. All these years later, I still miss ballet and go there in my mind whenever I can…see ballet whenever available, etc. And it is strange to think I once found my freedom in movement. Movement is pain now. I continue to try, of course and look for ways to fit the tumblers of the lock together that will allow me to open the door to more movement, where I may enjoy movement again. Maybe. Meanwhile, no one really knows except maybe my husband what goes on with me. I get the “but you look so good” all the time. It is lonely, but I always try to remember they mean well and usually just say, thanks. And I became a licensed professional counselor and have devoted my career to trying to counsel others. Now I am embarking in a new direction toward working with people with pain issues and chronic illness. Waiting to see where that goes. Thanks for what you do!

  • Callyberri

    Thank you for this article. I was also born to dance, sing and act. In my teens I was usually the lead in any musical and I have never felt as alive as I did on that stage. One of the most memorable moments of my life was when I was playing Mary Magdalene in Jesus Christ Superstar. I had just finished sing “I Don’t Know How to Love Him” and the theatre went completely quiet. Then, in the middle of the play, they gave me a standing ovation. My heart and soul have never been that full.
    The end for me started just as your’s did. I kept tearing ligaments, spraining ankles and got more and more clumsy. When the doctor told me I couldn’t dance anymore I thought that at least I could carry on singing and acting. Soon I discovered that I just didn’t have the energy to perform night after night. I knew that I could not go on. It was not fair to the rest of the cast and I felt retched knowing I was not doing my best.
    The last time I performed was in “Anything Goes” and I was 27 years old. I am now 53 and I have not found anything to fill that gap in my life. I am glad you are coping so well and I wish you the ability to keep flying across the stage in your mind.

  • Debra

    I still climb mountains in my dreams. What saddens me most is that my dreams of taking my grandchildren up a mountain trail for a better view are now gone . . .

    You are not alone. And you are still beautiful. Your words are powerful. Thank you.

  • Tami Lucas

    Fibro & Fluoroquinolone Antibiotic Toxicity . Please read pages 27-29
    the National Fibromyalgia & Chronic Pain Association
    http://www.joomag.com/magazine/fibromyalgia-chronic-pain-lifejun-2012/0648498001339623432

  • Tami Lucas

    Michael Kaferty 02/09/13 Glutathone IV

    Then Came Michael
    http://andthencamemichael.blogspot.com/

  • Tami Lucas

    The Fluoroquinolone Wall of Pain Cipro, Levaquin, Avelox
    https://www.facebook.com/pages/The-Fluoroquinolone-Wall-of-Pain/209182505773463?ref=hl

  • Tami Lucas

    Saving one life at a time…www.saferpills.org

  • Tami Lucas
  • Pat

    Christine, I sobbed – for you, for me, for everyone reading this. Attention? He thought you were doing this for attention! This is the most humiliating thing I’ve had to deal with in my life – 20 years of my kids having to see me suffer, cancelling things with family and friends, never being able to plan anything. I’ve never said “I’m sorry” so much in my life. I’m lucky I have family and friends who understand. And I’m lucky I live in Canada because I have healthcare and medication at a reasonable price.

  • Kathryn

    I read this through my tears. It is almost like I wrote it word for word. When I lost dance I lost everything I knew. I still day dream of dancing. Thank you for writing this for those of us who have lost our selfs, and still trying to find our selfs!

  • Peg

    Thank you for writing and sharing what I have lived and felt and yet have not been able to express. You have said this honestly and yet so eloquently! Continue dancing, even if in your mind/dreams…good for the soul!

  • NCL

    It sounded like you were telling MY story. I was a professional musician all my life. Then it seemed as though Fibro fell on me like a house. Of course, I was able to look back and see decline before the day came that I just couldn’t fake it anymore. I got to live a whole lot more life than you, but I am dead inside without playing and singing onstage, or even at home! At this moment, I am FROZEN with depression and anxiety. I can’t do the simplest things either. I’ve layed in bed SO many days now I don’t even want to go into my bedroom. My sleeping stays CMPLETELY off kilter, up all night, sleep all day. Just when I think it’s turned around, here we go again an w’re up all night. I say we’re because I’m looking at this thing as if it should have a personal name I choose to give it. After all, it controls me, why shouldn’t it have it’s own little personal name! Anyway, I’m glad I read your story, oh GOSH do I know how you feel! I pray we find something to help us!

  • Beautifully written, eloquently told and heart brokenly understood. Thank you for sharing.

  • Debbie Rinaldo

    sounds so much like myself, thinking of who I used to be, what I used to do, wishing I’d wake up one day without pain. I’m envious of people who can plan vacations or do any activity on a moment’s notice. I, too, was a dancer, on my toes by 4th grade, a cheerleader, hiker, even learned to tandem hang glide & was ready to try it on my own. I was a teacher, an animal rescuer & then the pain hit. It was as you say, a dailly grind, running to different doctors, clinics, undergoing painful tests, getting different treatments. I’ve lived half my life in pain, & I also grieve for the old me, my old life, while trying to cope, find a new purpose in life & a reason to get out of bed each day. I’m looking older, so I don’t hear those hurtful words as often now, “but you don’t look sick”, but sadly, even close friends or family, say different things that still hurt & still show that they really don’t know how badly I feel & how much I hide the pain. Thanks for sharing your story.

  • Ferotal

    This could be painful while we couldn’t do what we want. That same like a singer that losing his voice. http://zenerexdrug.com/

  • The Retired Bridgeburner

    What a beautiful post Christine. I myself write a blog about my experiences with chronic illness and your wonderful posts give me a level to aspire to with my own work. I think it’s incredibly brave to share theses experiences and I hope you find the new self to be happy with soon 🙂 wishing you many spoons xx

  • Cath Avalon Gypsy Rhodes

    I was crying so hard as I read this…tho I was never a professional dancer I have danced all my life and even performed on stage..I used to belly dance and did karate for a few years also but now I have osteo-arthritis in my knees I can barely walk let alone dance. I miss it so..and when I see people dancing and the joy in their faces I cry..I am so lost now I cant dance. I also have it in my hands and cannot do the craft/sewing I used to do..so I sit on facebook, in front of the tv or read a book…its all I can do now and I miss the old me. My doctor also thinks I have an auto-immune disease as my whole body hurts for no reason and I have sunk so low into depression that I have to see a psychiatrist for medication…I just don’t know what to do with my life anymore 🙁

  • brooke

    thank you for this. i wasn’t a dance but i was a runner, and now i am an overweight middle aged person who fights (and often loses) to just do the everyday things with my family.

  • glenda sabo

    I feel every pain you have gone thru……and see it in the eyes of my dancing daughter. She had the same life as you did. From early after school rehearsals and practicing dance classes to every year being in a professional Nutcracker. But , I her mom, was the one who got Lupus and I use to get so tired taking her too and from and back and forth to keep up with her, costumes, etc. Sweetie you will dance again in heaven when we all have new bodies again!