Published with permission. . .http://everywomanhasaneatingdisorder.blogspot.com/   by drstaceyny

My Story – Why do You Still Want to Dance?

By all accounts, I have what it traditionally takes to become a talented, if not great dancer. I have what is considered the “Perfect Ballet Body” (the perpetrated Balanchine “look” with long limbs, short torso, small head, relatively long neck and generally a pre-pubescent ideal). I have great feet (strong with high arch). I am musically talented. I have a love for performing and an excellent stage presence. I have good height. I have had less than ideal training, but I made up for that by devouring volumes of literature about Classical Ballet and teaching Classical Ballet.

From the age of nine, dance was my boyfriend (let’s call him ‘D’). D was my savior, my White Knight. He rode along in shining amour, on a stunning stallion, and whisked me off to “Dancingland”. I was rescued from an abusive, traumatic, violent, and at times, neglected childhood.

D was whom I turned to in times of stress. I perfected my relationship with D, practicing at it six days a week, for up to four hours at a time. I went through the leaps and bounds, the twirls and turns.

Then, someone by the name of Ed almost stole D away from me. He had me shackled; bound, prevented me from connecting with D. Ed started flirting with me when I was fourteen. It was a period when I was doing extremely well in an all-girls school; the best I had ever done in my academic life, was on the class committee, and was one of the outstanding members in the school dance troupe. My teachers liked me, my friends adored me, and best of all, I was having a wonderful relationship with D.

Let me introduce you to Ed. Ed is in the life of countless women, and statistics vary. Ed kills. Ed ruins your life. Ed makes you doubt yourself. Ed makes you act in strange ways. Ed isolates you from your loved ones. Ed is very common in the form of anorexia nervosa (especially among dancers) and bulimia nervosa. But further than that, Ed appears in the form of other eating disorders such as Anorexia Athletica, Bigorexia and Orthorexia Nervosa. In children (and also sometimes adults), Ed manifests itself as Food Avoidance Emotional Disorder, Food Refusal, Restrictive Eating and Selective Eating Disorder.

The Ed in my life was initially mistaken as anorexia nervosa (AN) and diagnosed by a (rather clueless) nutritionist as such. I showed all the classic symptoms of AN. Yes, I am a dancer. Yes, I weigh less than I should. Yes, I am extremely sensitive. Yes, I had childhood trauma. Yes, I have eating issues. Yes, I cut up my food into tiny pieces. Yes, I am conscious of what I eat. Yes, I have control issues. Yes, I can be rather obsessive. Yes, I am not eating enough. Yes, I am not getting my periods regularly. Yes, I am quite a perfectionist. However, I was not convinced. I did not have what I consider the key issues of anorexia nervosa: I did not have an intense fear of gaining weight or becoming fat. I did not starve myself (and I am extremely against voluntarily choosing to starve). I did not have a distorted body image, and I had never, at any point in my life, thought that I was fat.

Today, I have what is recognized as Food Avoidance Emotional Disorder (FAED) with elements of Selective Eating Disorder (SED). FEAD is in no way less serious or life threatening than AN. I believe that people do, and have died, from FAED, although there is little research about and awareness of this disorder, especially among adults and adolescents. Health complications, just like in AN, arise from FAED due of the lack of calories and nutrients consumed. SED is usually common in people on the Autism Spectrum Disorder and I do show signs of Asperger’s Syndrome, but have never been diagnosed.

Personally, I stop eating when I feel unsafe. (Unsafe is an emotion I believe is commonly experienced by people suffering from EDs.) [Unsafe: Upset/ anxious/ nervous/ misunderstood/ threatened/ unloved/ lost/ left behind/ angry/ stressed/ any combination of the above] As I feel unsafe rather often, I avoid food habitually, or survive exclusively on yogurt, apples, coconuts, cashews, chocolate, coffee and honey. Other than avoiding food, I have a history of avoiding school and refusing to talk.

With the diagnosis and treatment attempts at AN, I began feeling increasingly misunderstood and mistrusted. I even picked up certain other disordered eating behavior from my new friends (from group therapy) who all had an eating disorder. Also, there was a family upheaval and my parents started working till late in the night. It was a period of neglect and I felt that I had nobody to turn to. My sister was constantly staying late in school and started exercising obsessively.

When I was fifteen, I was the appointed the chairperson of my class, the best class of the level. I became engaged to D and spent half my time at his house – the dance studio. My schedule consisted of school, dance, sleep, and that was it. I did not have the time nor the interest to study and my grades plummeted. I was losing weight because I never did feel like eating and there was nobody around to make sure that I ate. As is common within the dance community, my weight loss was praised. I was looking good, they said. I was pleased. I am noticed! I have their attention!, I thought to myself. At that time, I was not yet aware of the health complications resulting from maintaining a low weight (weight that is low even for a dancer) over an extended period of time and was not concerned about the weight lost.

Things however, began to change. I started tuning out in class a lot (due to the lack of calories consumed, I suppose) – at first in school, then even in ballet class. I was not able to fulfill my responsibilities as class chairperson and was stripped of my post. Rumors, many untrue and some with elements of truth, began spreading all over school. Ana/ mia/ mental retardation/ psychotic/ raped/ abused/ developmentally challenged/ whatever. Classmates and friends started avoiding me. Juniors and seniors saw me in a different light. Ex-classmates and close friends did not know what to believe and how to behave in front of me.

I could not deal with the stress of facing rumors flying about over my head constantly and reverted to refusing to attend school (which I had a history of back in elementary school). I would cry silent tears at night into my stuffed toy and wake up with puffy eyes and encrusted eyelids. I started bed-wetting again (how embarrassing).

D became my sole companion throughout this, and my dancing improved. I decided to apply to Summer Intensives in several well-known schools in America and Europe. Four applications were sent, and I was accepted at three. In preparation, I worked all the harder and placed further emphasis on dance – I took free classes outside of my studio, worked alone in my studio before class, immersed myself in classical music, perused any reading material about dance I could get my hands on, and attended the classes of the levels below me. The importance of D in my life dramatically amplified. It was all I had going in my life; it became my life.

During the Summer Intensives, I was invited to attend all three schools year-round, and I accepted at a school in London based on its prestige and reputation. The fact that it was attached to my Dream Company did it for me – that would be the school I would attend, I thought. Looking back now, I should have chosen the school that had a teaching style more suited to my personality, a more nurturing, accepting school.

Things went along swimmingly for the first few months; I was getting cast in many performances, getting praise and attention from my teachers, and was well liked by my peers. Soon, though, I began to feel the stress again, with four dance classes a day in addition to rehearsals which would go on late into the night. I started feeling homesick and depressed. I was constantly anxious and was diagnosed as having Generalized Anxiety Disorder (GAD). I turned to my very selected foods and subsisted on them alone, refusing all other foods. The foods I was eating were not giving me enough calories or nutrients, and the nutritionist raised concerns about my weight. The school director even had a talk to me about it. Basically, I could not lose any more weight or I would have to go home. My friends took it upon themselves to monitor my food intake and were constantly leaving food outside my dorm (which ended up in the trash bin). Some practically forced food down my throat (I threw up).

The response of my friends, school director and nutritionist only served to increase my anxiety, and I began eating less and less. I lied about what I had eaten. I started avoiding the cafeteria (I hid in the studio to dance some more). During the times when I ate with my friends, I would eat what was considered a “normal” amount to allay their concerns. However, due to the modest amount of food I was used to consuming, I would feel sick, just like how a binge eater might feel after a binge. Reflexively, I would throw up. I never did stick my finger down my throat, or purposely threw up, but I would not say that my throwing up was completely involuntary (as in someone with food poisoning) either. I wanted to and felt like throwing up, but I never did force myself to throw up.

Anyone who exercises more than 2 hours a day would know that when one is not consuming (or digesting) sufficient calories, one cannot perform at her peak. I started having difficulties concentrating in classes and rehearsals, and had problems remembering even the most basic of combinations. Gradually, my dancing ability dropped. I had absolutely no energy to complete the longer variations of 3-4 minutes. My allegro and ballon were severely affected; adage was not so bad. (I would cover this up by standing at the back of the class, at the edge, for allegro combinations and be front and center during adage.) However, it soon became apparent to all observing that I was not dancing at the level expected of a student in a top ballet school. Numerous warnings and countless trips to the nutritionist later, I finally got kicked out.

(The nutritionist did not work because it brought out the rebel in me. Stick to this meal plan – Eat this, eat that. Eat at this time, and then eat again at this time. I had always been stubborn. The more I am made to do something, the more I do not want to do it. When and if I decide to do something, it will be of my own free will, on my own time. Nobody is going to tell me what to eat, and when to eat, the rebel in me thought. Suppose I did not love dance enough at that point. Suppose my stubbornness pulled dance away from me.)

When I arrived back home, I became acutely depressed. It felt as though nothing mattered anymore, I felt like a failure. I decided that I hated D and did everything to avoid it. I stripped my life of my one coping strategy. Thoughts of suicide were not far from my mind.

My parents blame dance. To this day, my mother thinks that it was a mistake sending me to ballet class in the first place, despite all the accomplishments I had made in dance. Despite the lessons I have learnt from it. Despite the discipline, diligence and patience I had developed because of dance. My father never did say a word, but in his eyes, I can feel a deep sense of loss, regret and disappointment. Disappointment for me, or in me, I could not tell.

Gradually, I became better and regained my health (both mental and physical), weight and sanity with the assistance of an extremely understanding and insightful psychiatrist (I still see him regularly – I find it perfectly normal). I began menstruating regularly again. I got on with my life, and did my high school exams. I applied for college, a communications course.

During my communications course, I started missing D acutely. I ached for it; pined for it like a lovesick teen. I decided that I no longer hated D so much. I was born to be with D!, I thought. After a year in the communications course (which I did not enjoy much), I made a transfer to performing arts, with a concentration in dance.

However, three months into my dance course, I had several epileptic attacks. This was not attributed to an electrolyte imbalance or low blood sugar, but to the neurological condition epilepsy itself. However, there have been reports that constant throwing up may lead to seizures. Certain music phrases, loud noises, bright lights, and extremes of emotions often set off my epileptic attacks, and I am currently taking benzodiazepines.

Sometimes, my mother yells at me to stop when I start seizing up, which serves to worsen the condition. But I know that it is only a manifestation of her frustration at seeing her beloved child in this state. I have put my mother through a lot – the school avoidance, the weight lost, the malnutrition, now the epilepsy. It is not because she does not love me, but because she loves me so, so much. All mothers love their children, and so do fathers. Parents, to me, are incapable of not loving their children, no matter what they may say, or do, or not do. Most of the time, they do not mean to hurt their children. They are just “acting out” to deal with stress and displeasure, like how I avoid food when I feel unsafe. Or they do not know what to say or how in behave in a certain situation, and avoid the issue altogether.

Right now, I am taking a break from school and am a teaching aide at a school for children with special needs (especially autism). I also baby-sit about twice a week, and am spending a lot of time with my mother. In my free time, I read the encyclopedia, books about children with special needs, and storybooks for pre-schoolers. I like looking at the pictures in them, and find the stories endearing. I am trying to learn French by reading the dictionary. I also listen to music, dance, stretch everyday, do yoga, draw, paint, write poems and short stories (inevitably, angels – with three pairs of wings – pop up in my creative pursuits), play with my cat at the park (I love the swing), watch movies and sometimes just chill. Next I would like to learn to ride a horse, take pottery classes and definitely have six kids!

In six months, I am going back to college, to give dance another shot. My godmother is against me going back to dance. She says that there is only so far I can go in dance because of my uncommon reaction to musical phrases, but I think it might turn into an advantage if I manage to keep my epilepsy under control. Even if there is only so far I can go in dance, I do not mind – I just want dance to be part of my life, as big a part as it can be.

If dance does not work out, and my epileptic attacks become severe again, my Plan B is to go into Child Psychology and Early Education. Ultimately, I would like to be an owner of my own business, but I am not sure which sector I would go into yet. I would also definitely want to get married and have children of my own. I would unquestionably send them to ballet class if they express an interest or show the aptitude. I think dance is an excellent outlet for children (and also for adults). I would also like to take a degree in law. And an MBA as well… There are still so many things I want to accomplish in life!

I cannot say that I never avoid food anymore. I am still learning to cope with Ed in my life. I do not think that Ed will be completely out of my life forever. Sometimes, I still do avoid food, especially as a way of acting out my displeasure. Sometimes, I avoid food to irk my parents. Sometimes, it is my way of maintaining some control in life. Other times, I simply do not feel like eating. Anything. At all.

Nonetheless, there is a minimum weight that I will not allow myself to fall below. I try to eat as wide a variety of food as possible (which is hard). Sometimes, when I simply do not feel like eating, I make myself at least drink something (small in portion, but calorie dense). About a third of the calories I consume come in liquid form, such as coffee with lots of full cream milk and two sugars, Greek-style yogurt with honey and coconut oil, soups, congee and diluted juice. There are repercussions to my Ed. I imagine all forms of Eds have their repercussions. I cannot stomach a “normal” portion of food (I will feel sick and throw up after eating that). I have horrid teeth. At nineteen, I have a pre-pubescent body and petite bone structure. People often think I am fourteen/fifteen. I always get carded and constantly laugh about it. I have not exactly lead a “normal” life since the age of fifteen, and I find myself wondering why I cannot be like other kids, other girls my age. I find myself wishing I had a bigger bone structure so I do not look so tiny all the time. I wish I had a boyfriend like girls my age.

However, Ed has taught me many things. We, as a society, place an overemphasis on appearance and size. It is no wonder that many women develop different forms of Eds. Ed has taught me to be accepting and embracing not only of my body, but also of my whole being – my emotions, my intelligence, my interaction with others, my coping skills, my thighs, my bones, my teeth, my hair, my acne, my beautiful eyes, my long fingers, my big and strong feet, my hypersensitivity, my ability to connect with animals and kids with severe speech problems, my stubbornness, my perfectionism, my anxiety issues, my moods, my childhood trauma, my lack of a boyfriend, my non-“normal” life, my epilepsy, my everything! It has taught me not to be too quick to judge others and tolerance and embracement of all shapes, sizes, states of being, races, cultures, disabilities and behaviors. Our imperfections are what make each of us special, our quirks are what make us unique, and the challenges we put behind us are what make us stronger.

I can honestly say that I am a stronger and better person because of Ed. I have done many things I am ashamed of doing, and Ed made me do all those things. Ed contributed to my depression. Ed made me lie. Ed made me hide. (Or maybe Ed did not make me do all those things; I chose to do those things of my own free will. I do not know.) I do not hate Ed. Ed made me look at life in a different way, made me treasure the straightforward moments in life that bit more. Ed made me embrace life, and best of all, Ed is like a brief flirtation with a lover who makes you realize just how much you should treasure your relationship with your husband. I love D all the more because of Ed. Ed is also like a special needs child who comes into your life when you were expecting a typical kid. He teaches you about yourself, about your limitations and stretches your patience. He puts you through intense highs and tremendous lows you thought you would never experience. He turns a caterpillar into a butterfly.

Ed has taught me a series of things to be ok, and not ok with, and you may or may not agree with it. Here it goes:
It is ok to gain a few pounds.
It is ok to lose a few pounds.
It is ok to feel anger, or fear, or resentment, or sadness, or remorse, or regret, or any other emotion we will all encounter at some point in life. What matters is that we deal with it in healthful and effective ways.
It is ok to relapse.
It is ok to cry.
It is ok to be weak at times.
It is most definitely ok to seek help. It is important that help is sought.

It is not ok to allow Ed to spiral out of control.
It is not ok when Ed starts controlling your life.
It is not ok to hurt yourself by cutting.
It is not ok to starve yourself.
It is not ok to go for two days without food.
It is not ok to commit a long, slow, suicide by entertaining Ed and not seek help.
It is not ok to put your loved ones through the torture of witnessing your suicide and not letting them help.

Falling out with your loved ones over Ed is a sign that things are not ok.
Internalizing and suppressing our thoughts and emotions are sometimes not ok.

ED has also taught me that sometimes, there is no cause. There is no reason. No one is at fault; no one is to blame. Things just are – just like how the clouds roll by, just like how life goes on. Everything that I had experienced in life, including my childhood abuse, trauma, violence, neglect, teasing, being punished without a sufficient reason, Ed, epilepsy… They all contribute to who I am today and I love who I am today. I am funny, compassionate, sensitive, smart, beautiful, flexible, sexy, caring, nurturing, kind, gentle, and I love life! Life is good – it should be embraced, every single minute, every single second.

So why do I still want to dance? Because I have come to realize that dancing is what I am happiest doing. I excel in it. Dance is something that I have profound love for. I am not going to allow Ed to steal dancing away from me. Ed is not going to rob dance from my life. My story is not over yet, and I still have a chance to be a dancer, or to work within the dance scene. (Secretly, I would like to be the artistic director of either a dance company or a dance school.) When I decide that dance will play less of a role in my life, it will be because I decide so, not because Ed, or epilepsy, or anyone else says so. Above all, I need to dance – just like we all need to breathe, and eat.

When you think that no one cares
Remember
I do.

When you feel unloved
Look up at the stars
Twinkling and smiling
at you.

When all hope is lost
There is always tomorrow
To regain hope again.

God is there
The six-winged angels are there
All showing concern
for you.

Do not let Ed ruin your life. The road to recovery is long, fraught and slow, you may never recover completely, but certainly, to be in recovery would be better than to have Ed rule and control your life. You do not want your life to revolve around Ed. You do not want Ed to give you lifelong repercussions. You do not want to die from Ed. You have so many great accomplishments ahead of you, so many more hearts to touch. Make the decision to want to get better, seek help. Ed cannot control your life, nor can anyone else. Only you can. And I believe in you. And so do God, and the six-winged angels.