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
  • Em

    Thank you for writing that. I’m so sorry for all that you have had to go through. But reading this has made me feel less alone, especially about the dancing. I was once a dancer as well and I started to get sick when I was 16. Unfortunately, 14 years later, I still don’t have a diagnosis and I continue to get sicker and sicker as the years go on. The one paragraph that I found really interesting was when you mentioned having to learn a new kind of dance. I’ve never looked at it that way but it is pretty accurate. Thank you again for writing that as well as everything else on this site. The spoon theory in particular has been a huge help.

  • Your story is eerily similar to mine. I’ve been sick for more then half my life now as well. I dealt with the doctors saying it was psychosomatic and all the other crud. I hope you find yourself, that’s something I continue to try and do.

  • Tink Janicaud

    me too <3 thankyou sweetie <3

  • Terri

    My 10 year old daughter(an amazing dancer and actress) has been very sick and recently had a positive ANA test. She has not been herself for weeks. Our ballet classes are being replaced by bed rest and T.V. and she could not make it through a voice lesson today. I am praying that maybe it’s mono….but my thoughts are headed down a different diagnosis… If it is LUPUS, your story maybe a sad glimpse into the future:(

  • erly

    You write so well. Beautifully done. I feel down at times down due to not being who I use to be, a busy active productive type a person> Now I keep busy at not…Still work full time, retire in about a year but I love my job, I will miss it some but now I come in only because I have too or I would have quit long ago due to the pain I feel off and on and on. I may be high, happy, working on an aweome project, then for a moment I lose all my energy from head to toe and wish I was in a very hot bathtub full of water, this always helps for a few minutes, just a few but I will take few minutes, not versus not. Fibromyalgia is no fun, thought it should be better by now, but it is now about four years and no better, perhaps worse. Have a life, I am a producer, it takes all I have at times to finish the television production, always a success but a draining experience as I am practically in bed for a couple of days after. Just when I feel good, it drops in like a univited gust at the wrong time.

    I dream of a day I will feel good for a whole day, not off and on…
    Too busy to let this get me down, I have a life but not the one I had and plan on having in between the time of pain…
    I want to dance it all away, the pain the anguish I feel sometimes and then I know the truth is, this is me now and me in between the feelings of the perhaps unexpected but reality as it is. Stay strong ballerina, stay strong. Erly

  • iris

    Reading this was like reading my own life, except I’m at the point now of attempting to find who I am after losing ballet. I danced 18 years and was diagnosed with EDS Jan 09′, Fybromialgia and POTS Aug 09′. I the mother of an amazing 3 year old daughter, Zoya. I cannot work and am applying for SSI, knowing that my chances of being approved the first time around is 30% or less and can take years. I’m a fan of the site on Facebook as well as one of your many friend’s on your personal page.
    I don’t know how you do it, you are amazingly strong.

  • Your story touches so many places in me. As a former dancer (ballet since 8, Modern dance major in college, African dance, performing, teaching) I have developed many problems which I assumed were dance and over-stress related issues, only to be diagnosed with FMS a few weeks ago. I mourn the fact that I no longer put on music and even move for my own pleasure and exercise. And I haven’t found the intensity of passion for anything else since the dance career ended. I have studied Qigong and Tai Chi for the last 10 years but recently even these have been too much for my joints and muscles. I do find joy in growing plants and gardening and nature but how is it that after all these years I still miss the me that was a dancer? My heart goes out to you…

  • Barbi Rakes

    I was never good at sports but loved to do them. From early age I would tired early and had pain as early as I can remember. I would get hurt in PT doing the norm of things which PE teachers did not understand. When I found out at 38 what I had, Fibromyalgia, it was a load off of me as I know knew it was not “all in my head”! There is a reason for every thing and I found out that I must of had it from a illness I had at 3. YES! I believe you can have it all my life.
    Barbi

  • This is so close to my own story, except I have fibromyalgia…

    I remember being 12 years old and being in my Pointe Classes feeling so tired and exhausted, not being able to jump as high as the other girls anymore……I hurt my Achilles Tendon around that time also playing street baseball of all things lol

    I eventually had to quit Ballet, and it broke my heart. Still to this day, when I feel I can, I use various things in my home as a barre, do the stretches, make pitiful attempts at pirouettes, etc.

    I was diagnosed with FMS in 2007, now I wonder if the symptoms were there my entire life mistaken for other things.

  • I was 4 when I got juvenile rheumatoid arthritis, 9 when I was diagnosed (doctors said it was my mother’s attempt to get attention), 16 when I started using a powerchair. I, too, have parts of myself that have died, yet I still carry them with me. As you said, like ghosts. Except they weigh more.

    Beautiful writing, so evocative. I am sorry for the dancer within you. Thank you for sharing yourself.

  • Jess

    Wow, you just summed up my life as well. I had the same experience.

  • Sunni

    I’m reading this through the tears…It is amazing that you could so eloquently put this into words. I could almost anticipate the next sentence before I read it. I’ve been fighting this for only 7 years, but your descripton of the struggles with doctors, insurance, medications and so much more reminded me of my daily life. I get so frustrated not being able to be who I was. I don’t really know how to be who I am now and feel useful, helpful and productive. We do have to grieve our old life. I plan my day and then Fibro, CFS and PAIN take over and no matter what was in my blackberry, my sicknesses decide what I do and who I am for the day. I know people think there couldn’t be any thing wrong with me because I try to keep a smile on my face. My husband is asked quite often, “She must be feeling good lately because she looks great”. My husband responds, “You have no idea how much she is suffering, she is always in pain, but she hides it very well.”
    So what do we – do prove to everyone that we are in horrible pain by our appearance? Sometimes putting on a little lipstick, mascara and fixing my hair at least makes me feel a little better. It doesn’t last, but you gotta do what you can.
    Thanks for writing such a great article. I really appreciate knowing that I am not alone and I’m not crazy.

  • Whimbrel

    Thank you so much for writing this. You could be telling my own story. I am 19 years old and mourning the loss of my own ability to dance by lupus. It helps to see that I am not alone, even though some days it feels like it!

  • I miss ‘me’ too……

  • Lisa B

    Thank you for sharing your story. I am not a dancer, although dancing to life’s music is something I try to do in my heart. I too am trying to make sense of my invisible health issues. It is a journey, you described many of my feelings eloquently!

  • Jackie Caruso

    I feel your sadness & pain I too was a dancer & gymnast & slowly but surely I began to lose parts of my myself to what I later would learn was Fibromyalgia & Dysautonomia. I also was a cheerleader & a Mt Biker. I was active my who life & fought to be as long as aI was able to do anything but now I am lucky to have a good day where I go out & have lunch with friends & make it thru ok. Thanks for sharing You are not alone *hugs*

  • Rhian

    Hi Christine, that was beautiful and I can relate to that so much. Thank you for sharing. It’s funny, I also wrote about my dance career ending last week. I just went from ballerina to wheelchair in my living room.

  • Mandie

    I used to be a cheerleader and when i got sick i had to stop. thank you so much for sharing your story.

  • Becky

    Very well written. I was never a dancer, but I had to give up a lot of things when I got sick. I’m still undiagnosed, still get the occasional “it’s all in your head,” and I’m constantly on an emotional roller coaster between doctors who are confident they can cure me and doctors who tell me there’s no way someone my age can possibly have that many symptoms. I think in this article you show the danger of defining ourselves by what we do. We all do it, but with every hobby or profession there may come a time when it’s no longer possible–it just came a lot sooner for most of us. As difficult as it is, in a way it might be good for us, part of what makes us stronger. At an age where most of our peers are blindly making their way through life, defining themselves by what they do, we have had to take a step back and figure out who we really are. It may be painful to go through, but in the end I think most of us come out much more confident and comfortable with just being ourselves.

  • Jacqueline Radford

    Thank you so much for sharing, Christine. You are a constant reminder to me that I’m not alone in this lifetime battle. What a blessing you are to so many of us!!

  • sue

    Very well written. this message really stood out for me. Thankyou for sharing..

  • Emily

    This reminds me of myself at 11. I had to give up ballet because my body was too tired and sick and achy all the time. It was another 3yrs before I was diagnosed with ME. 14yrs later I still think of dancing and feel the sadness of having to give it up. I still have ME today, but it is never easy getting sick at young age and being different for everyone else, missing out on things that your friends take for granted.

  • Julie

    I also gave up ballet due to not being able to walk after I would practice. I still can’t watch a performance without crying. I stopped dancing 24 years ago. I now find myself having to give up my second career choice for similar reasons. I feel lost, but no longer alone. Thank you for sharing.

  • Allison

    Your story is my story. It is my sister’s story. My sister has SLE and I have Ankylosing Spondylitis and Fibromyalgia. I helped her when she was first diagnosed and now whe is there for me. I saw doctors for years and finally received the correct diagnosis. I used to ski, downhill, cross sountry and even water ski. That is now my past. As is my profession. I was a registered nurse. There is so much to deal with when you are struck with a chronic illness, in addition to the physical problems, there are the psychological issues, specifically depression. You have to plan your day around your illness and energy level. Pick what you are able to do that day without exhausting your energy stores.

  • Susan

    Christine, I read your “Spoon Theory” and now this. I too have been sick longer than I have been alive; since the age of 4. I am now 42 and your stories have really touched my heart. It isn’t easy living with a disease others don’t understand and sometimes they think you make it up. I work; I always have since I can remember and even when having my babies worked full time. It wasn’t always easy and my beautiful girls learned very young how to help me get dressed and brush my hair. I have Lupus, Sjogren’s Syndrome and now Pluerisy. I get up everyday because I have to; with pain, no energy and short of breathe. But I go on….we all do. We are strong and will continue to educate other’s on this “mostly silent” and “invisible” disease. Keep on writing; you may make me cry; for myseld and all the others, but you are right.

  • Crystal

    I too had a doctor who thought I was lying about the pain I was in. It is devastating to learn that someone you thought would help you will not and does not believe you. Thankfully I have not been sick longer than I have been well but I am starting to loose track of time. Luckily I have found a doctor who believes me and is working to find meds that work to keep everything at bay.

    My creative outlet is knitting, if it is simple it can be meditative, if complex it can be a distraction from the pain. I usually have 2 projects going at the same time so I can work on which ever I need to. Unfortunately if i don’t have a brain that day i can only work on a simple project even if I need distraction. Audio books are also good especially when I can’t handle light to read, or want background other than music.

  • LC

    Thanks so much for sharing! I feel your pain, everyday. I felt oddly, relieved and somehow, grateful, that they had finally put a name to my “symptoms”. I knew for years that it was Lupus, since it runs in my family, so why couldn’t I get a Dr. to even listen to me, without thinking, that all I was doing was Dr. hopping, just for pain meds? You get labeled by these Dr.s and when you finally do get one to lsten to you, it’s like being told you just won the Publishers Clearing House grand prize! Once I heard the word Lupus, I thought that half the battle was won and relieved that my disease wasn’t all in my head, but I couldn’t have been more wrong. It was easier for me to accept my disease and my limitations, much more so, than my own family and friends. Why do I have to constantly defend my health, and choices I HAVE to make, to the people I thought, cared the most? I always thought that “sharing” what I was feeling, both physically and mentally, was educating my friends and family and helping them to understand, just what I was going through. I was wrong, again. Instead it’s been said to me that all I ever do is complain, and that “no one’s health can change that fast, from day to day”, so therefore, it must all be in my head. All I was ever trying to do, is to take care of myself, know my limitations, and stay home, so as to not ruin anyone else’s fun, if I went out and didn’t feel good. Now, all they say is “she’s always so depressed-if she got out more, she’d probably feel better”. Don’t they realize, that I don’t go out much, because I don’t feel well? I always ask them, how often do they feel like going out and whooping it up, with the flu, joint pains and a fever? Do they really think I enjoy living like this? Fatigue? Exhaustion? Fevers? Do they ever stop to think that maybe just a little support, education and compassion, could go a long way to help me through the tough times, instead of just making me feel guilty an defensive? It’s not bad enough that I have to worry about my own health, but now throw a boat load of guilt and doubt into the mix, and well, you see where I’m going with this. If only, just one of them, bothered to even open a website to see what others go through with Lupus, just maybe they could start to understand me and why I have to make the choices I do. I’m not that same person I used to be.
    So, until they educate themselves, just sign me,

    Isolated in NY

  • Emily

    I cried when I read this article, because I felt like it was my own story. I wasn’t a dancer though. I am 24 years old. I have been sick ever since I was about ten years old. First it was a few severe mental illnesses. Now I have both mental illnesses (although they are under control and I work really hard to maintain and improve my mental health) and a severe case of interstitial cystitis that took a long time to get properly diagnosed. I mourn the life that I wanted to have at this age. I mourn the fact that the electric shock treatments done to my brain gave me permanent brain damage and I can’t pass the advanced math classes I need to do if I pursue my dream of being a vet. At this point in my life I am forcibly unemployed, not in school, and on disability– all due to my chronic illnesses. This is not the life I dreamed of, and it hurts. Some people tell me that it’s ridiculous for me to be sad about the things I have lost, all of which I worked my ass off to get. I am working hard to be able to go back to work, go back to school, and get my degree in early childhood development with a focus on special education. If I can’t be a vet then I want to work with younger children who have special needs. I would also like to get off disability and be able to support myself. This life is my reality now, but it was certainly not what I dreamed of or what I thought it’d be like. Right now, I’m just trying to regain the ability to function better so I can build a new life for myself… a life that isn’t what I dreamed of when I was a little girl, but simply one that helps me be self-sufficient. When I start thinking that I should be able to have the life I dreamed of, I remind myself that “should” is not helpful here and that I have to make a new life, a new game plan, given the challenges I have in my daily life. Thanks for helping me feel less alone!

  • Christine, I am so grateful for your website and your shared experiences. I am now on my third Rheumologist and diagnosed with Lupus, Fibro, and Sjogren’s Syndrome. I often look for the old me, thinking I had a bad dream. I am not able to work, raising my daughter is hard on “bad days”., and I miss feeling confident, productive, and fullfilled. I don’t think that people understand that you are not just fighting a disease within, but that you also fight the inability to work and to be fully independent, misunderstandings from docs, family and friends, and your own thoughts and feelings on coping with Lupus. I wish that one day a treatment will come along to help those living with Lupus live a better, higher quality of life. Any suggestions to do this?? Feel like I have been on a rollercoaster for the past five years. Jennifer Taber, Rotterdam, NY

  • linda

    Christine, i knew that you were a dancer, i knew that lupus stole your life, but i did not know the whole story. Thanks for opening your heart and your soul and for sharing your story.
    You have courage beyond imagination.
    Love you much, wish you spoons.
    linda

  • linda

    Christine, I knew you were a dancer, I knew that lupus stole your life, but i did not know the whole story.
    Thanks for your courage and opening your heart enough to share it.
    Love you much, wish you spoons. Linda

  • Carol

    Thank you for this wonderful story. It brought back a memory from last year. I went to my parents’ 60 wedding anniversary in March and after eating a wonderful lunch my parents were placed on chairs and everyone was dancing around them in a circle. I love to dance, give me a chance to Israeli folkdance and I’m on the floor.

    No more. My hand was grabbed, I danced a few circles but had to give up. Afterwards I was in such pain that I had never had before in my legs. Damn diabetes neurophy and arthritis. Thankfully my sister had painkillers with her or I don’t know what I would have done. Not living in the states if I had to go to a hospital it would have cost me dear.

    So while my head says dance or walk my body just sniggers.

    Carol in England

  • Barb

    As per your usual style this is so well written and says so many of the things I and I am sure so many have felt at the betrayal of their bodies, on anger at the lose of who we are and what we enjoyed. Thank you Christine for giving me a voice. Barb

  • Unicorn

    I posted a fuller response to the artical on Christine’s Facebook so I will just say here… dancers are always dancers and always benefit and I wish all folk with broken bodies could enjoy dance training to understand that their bodies are still beautiful and can be graceful. Christine hasn’t stopped being a dancer or stopped benefiting from a dancer’s training and outlook (note her therapists comment oin her great ass : ) Take care

  • FitITGirl

    Thank you! Soothing to know that I am not the only one mourning about the past past. Thanks for sharing!

  • S

    U R my hero ……. i hear dancing in your voice and feel it from your heart ….. xoxoxoxo S

  • clare

    Oh Christine, you are singing my song!! I also have those great memories of ballet class and feeling the sheer joy of movement.
    It almost seems like that young dancer I remember is not me…but thats not true. She is still inside me urging me to stretch and do a plie or two. These days I lean on her to keep me moving and motivated to not give up. She reminds me a little work everyday can go such a long way.

  • Fiona

    Thank you for sharing this moving account… it brought tears to my eyes. I was diagnosed with ME 6 months ago and feel as if I’m just an empty shell walking (well, not really walking) around now. I can’t believe the things I used to be able to do and to put my body through – things which are now impossible. I miss the old me and I’d do anything to have her back, but I guess the next step will be trying to accept that she isn’t coming back.

  • Susan

    I, too, gave up my dream if being a doctor because I knew that I didn’t have the stamina to be on call for 36 hours. I just didn’t know why. I ended up teaching for 25 years. I absolutely loved it, but had to give that up before I was ready because of my Lupus. I’m sorry you had to give up dancing. There’s always something else for us, though. I think you’ve found that for yourself. Wishing you pain-free days.

  • Julie Culp

    Christine,
    Thank you for helping us realize that we are not alone in our daily life with Lupus. Your stories are an inspiration to all of us, thank you.

  • Lori

    After almost dying from cancer which was discovered late, and now having Fibro, CFS, and ICB, It’s been a long road. Christine, thanks for writing your story. All of you give me hope because I am not alone. The one thing that has helped me the most was finding the Warm Pool in Berkeley Ca. I don’t know if any of you have tried warm water therapy ( pool has to be 91-95). I know chlorine can be an issue. Thanks again for your story.

  • kyle

    I too was told I was obviously gaining too much attention from being sick and must like it… honestly where do these Drs get off? haha…. what young girl EVER *wants* to be sick when they have the world at their feet and a promising career?? I soo related to that and I am still young in this illness journey… thank you for sharing though… it really spoke to me and its nice to know I am not the only one who has been told such horrible nasty vile things…. thank you once again for sharing!! BLESS YOU! Kylee xxx

  • Thank you so much, Christine. I was a dancer, too, before I got sick. I was really touched by the way you were able to put into words so many things I have felt and thought over the years. I, too, get scared when trying to learn a new hobby or art, afraid that my joints & fatigue will find a new way to take it from me as well.

    I have a faulty collagen gene which has screwed up my circulation and joints, but I recently rediscovered my love of music through singing & songwriting, which so far is working for me. I can’t play any instruments b/c of my joints, but my vocal cords seem able to handle the pressure. The process of finding new ways of expression is a tough one, but I’m sure you have the strength to keep exploring new parts of yourself. I wish you all the luck in the world!

  • Claribel

    Thanks for sharing. I cannot remember life without pain. It is so sad but taught me to enjoy the “good” days and cherish the simple things in life.

  • Stephanie

    Wow, so beautifully written. Thank you for showing me it is not a bad thing to mourn who you used to be. I am about to hit my one year since diagnosis of ACM. I was an EMT and a Search and Rescue Tech. My life, My soul was saving others. Being there to pick up the pieces for people in distress and do all I could to make it better.
    Now…. I’m in constant need of someone to make it better for me. Thank you, thank you for making it okay for me to feel the death of my past self and for reminding me that I also am still here.

    Stephanie

  • Jen

    I was a 12-year competitive martial artist. I was diagnosed with Fibromyalgia and Chronic fatigue symdrom after 8 years of horrid experiences with doctors and aweful pain and exhaustion. I now struggle just to hold down a job… and it is hard to adapt to being a slow-moving, tired, overweight person who feels so old, yet looks so young.

  • This is beautiful, Christine. Thank you for writing it and posting it. I know what it is to love something that much, when it’s who you are and not just what you do.

    You reminded me of someone I knew in San Francisco, a dance teacher who was too old to perform. All of the ballerinas and ballet masters go to a certain peak when they’re young, and time takes it from them. You hit that wall younger than most, but it is the same. He turned to choreography, you turned to writing, there is more to you than this tragedy.

    Yet it still is one.

    Robert

  • W.S.

    This article hit home. I also had to give up dancing ballet because of a chronic disease, lupus. Thank you so much for a wonderful read.

  • Ann

    Thank you so much for sharing your story Christine. It can be a very difficult and painful re-living of our pain and the loss of a beloved career.

    You are a brave Female Soldier

  • I too love to dance. This really touched my heart Christine. It sucks to have an incurable chronic illness and not be able to go back to your dreams. Thanks for sharing.