Once upon a time … a face … Eva Scher
Once upon a time, on December 18, 1957, a baby girl was born in Paris, France. Not quite a beautiful princess, I was born with a heart and soul, a wish to live and grow, a thirst for nourishment, light and love.
Those who looked at me could not quite tell what was wrong with me. My eyes were slanted, my ears tiny. My face seemed unfinished with no chin or bone structure. I was a very strange baby indeed, bringing tears of distress to my bewildered mother, a deep disappointment to my confused father, shame and anger to family and friends. I brought excitement to the hospital medical staff as they searched for a name to this rare disfigurement. The name is Franceschetti Syndrome – Treacher Collins Syndrome.
In the midst of the confusion, a kindly fairy bent over my crib and whispered in a silent language that only babies can understand. “You are a very special baby, a four leaf clover, a unique rarity. Your path will not be easy. Like all living creatures on this earth, you will struggle, suffer and at times wish to give up. To face this challenging journey of yours, I chose for you the most deserving parents in the world. They will be your ally and your strength. They will show you a pathway that shall become your very own. You will be gifted with a heart that captures all subtleties of human emotion. You will see through their soul. Many who cross your path will love you and want to be with you. You will learn faith and the ability to trust life, even in the hardest of times. You will desire to learn, grow and make the most out of your stay on Earth and beyond.”
So life began for me. In spite of my great difficulty eating and swallowing food (a part of the syndrome package) I grew. I learned to love music and the songs my dad sang to me in Yiddish. I did not want him to stop singing to me and cried as soon as he did.. I learned to trust and love animals. I had no fear of dogs twice my size.
I became aware of my difference at a very early age. I was raised by a nanny for the first four years of my life and spent a lot of time alone. I remember vaguely the unkindness of other children and the mean comments that I did not understand. Slowly, day after day I created my shell, a protection against the aggressive world. In silent dreams, I created a kinder, gentler world.
Silence became a refuge. When I started going to elementary school, boys were waiting for me with their taunting and teasing. Before facing my tormentors and passing the school gate, I looked at a very special statue of an angel with only one arm who put a finger to his mouth, inviting me to be silent, to endure with a smile. I could hear the kind angel’s silent language as he whispered to me “endure, smile and keep your head high”. Neither my parents nor my friends saw what I was going through. Like a beautiful princess, I passed by my tormentors; putting all my energy at pretending not to see, not to hear them. I discovered inner power to overcome the real world.
Life went on. A strange face; a growing child; the outside world; demands and expectations and silence. I had no words to express my feelings and my fears and my hopes. Of all the books, stories, and fairy tales I could read, none even closely matched my experience. Yet, I had a sense of curiosity, of wanting to discover the outcome and the meaning of this very special journey of life.
As I was hearing impaired, the sounds came to me from far away. I juggled with reality, feeling like a funambulist walking on a tight rope, taking one-step at a time and not looking down. My face was so strange to myself. I could understand why a little boy hid behind his mom as he saw me. I frightened him. We were both equally scared.
What was the meaning of this so strange way of going through life? I was curious and had faith in dreams. I visualized a better world. Somewhere, there was my twin soul, an older boy who looked just like me and lived far away, a fearless boy who would protect and console me.
School was a difficult time for me. Being hearing impaired, I had to make a huge effort to be an average student. I feared making mistakes, saying or writing something ridiculous. I was constantly on my guard for some incoming danger and never dared taking unnecessary risks that could put me in trouble. Slowly but surely, I was learning. I remember the day when we read aloud a story of a little girl whose mom and dad became sick and died. Each reading lesson was a torture for the empathetic child I was. I could not imagine how a little girl could suffer so much and have so many misfortunes befall her. I was in tears and when it came my turn to read aloud, I was unable to utter a word. The class laughed. The teacher and my classmates believed that I invented this stratagem to avoid reading aloud. Everyone waited for me to cry and I could not stop my tears. I also had a real difficulty with abstract learning, especially with math. None of what I was learning seemed to help me understand my world. It all seemed so meaningless, although I was trying very hard in order to please my mom and teachers. I was functioning on a survival plane. I was always looking ahead for a bunch of mean boys to tease me; finding all kinds of good reasons to cross the street to avoid them. This occupied a lot of my attention.
At age sixteen, after years of painful researches, my mom found the surgeon who could and would operate on me:- Doctor Tessier, the founder of reconstructive surgery. I then had the first of ten surgeries. It was so frightening inside; the sensation of totally entrusting someone with my face. The very first surgery was an intense moment for me and for my parents. It was a dream coming true. Something could be done and hopes were ahead for us.
Changing a face every six month was no picnic. The unknown of what I will look like. The swelling of the first weeks and of course the pain. Grafts were taken from my ribs and hips to make the nose and chin. I could not walk for weeks. Breathing was also very painful. The results did not appear right away and for months after the surgery, I had all the mirrors hidden or covered up. I did not dare look at my face. By far, the most dramatic of all was the shaving of my entire forehead. Nevertheless, I found such an elegant way of covering it up. After I returned to school I found that many girls imitated my bandana style.
Dreams carried me through the life I would live; the traveling, the studying and making friends with people from all over the world, living a full and interesting international life. In those days, I was a passionate reader and was mainly interested in finding out how the great literary heroes lived their lives. They inspired me with new adventures.
The ten surgeries spread over my high school years were like parenthesis in my life. It was like swallowing a big bowl of sour medicine. I grasped the bowl, closed my eyes, stopped breathing and hoped it would be over quickly. Today all this is a vague remembrance. I never cried before surgery. I drew courage as I connected with my grandmother Chava who perished in Teblinka and imagined how stoic she must have been. I also thought of my dad and mom and how they survived the Holocaust. I clenched my teeth and relied on my faith that it was all for the better.
All throughout those years of metamorphosis, I kept doing the very same drawing in every paper and notebook of mine. With each drawing, I invented an ideal life, a very special destiny, adventure and romance.
Dreams, reading, visualization of a better time was what kept me going. A smile frombb my good fairy who assured me that I was doing okay; that in spite of hardship and a feeling of failure I was overcoming a great deal; doing great and walking toward a brighter pathway, creating my life with every passing year.
When I was seventeen, I changed my name from Evelyne to Eva and this was the beginning of a reconstruction. After I graduated from high school, I took my destiny into my own hands. I went to Israel, met and fell in love with my future husband, an American man who asked me to live in Los Angeles. It was the beginning of a new life. Changing country, speaking a foreign language, adjusting to a different culture were ways of healing my wounds and becoming a new person. I was leaving behind the past, the feeling of failure, the bad memories.
Just as my face seemed a separate part of myself, of my body, my reality of living with Franceschetti Syndrome was rejected and ignored. It was taboo to talk about it and I would not allow anyone to bring up the subject. It was as if I were living completely cut off from my past. I went as far as not telling my husband about my TCS. He accepted the version of my being in a car accident and I hid all pictures of myself as a child and teenager.
In the USA, I wanted to catch up with my difficult school years and take revenge. I enjoyed the American university system and I got a BA in Latin American Studies at UCLA. Then, I obtained a teaching credential and a Masters degree in Special Education while working full time as a teacher in inner city schools. I taught elementary school in English and Spanish and became a bilingual special education teacher, working in a day class with children with learning disabilities.
I went back to France at age thirty three to be closer to my aging parents. I continued teaching children and adults. However, in Paris, the past was catching up with me; the feeling of failure, of not being able to achieve as well as in the US.
Just as in the US, I was hungry for academic knowledge and ran after university diplomas to fill in the void and make me feel a respected, knowledgeable professional in France. I was frantically cumulating personal growth and communication workshops to better understand myself and develop self confidence.
I immersed in the search of my clown. As a theater clown., I sublimated my past. I was now the initiator of laughter and not the victim anymore.
It was in my beginning clown workshop that I first discovered the Feldenkrais Method. Heinke Asheman, my clown professor and dear friend was on her practical training program and I was enthusiastically eager to share all she was learning. I will never forget the first ATM she taught us. I couldn’t figure out how to raise the right arm and the left foot simultaneously. The simple movements were for me incredibly complicated. I was clearly facing a lack of coordination that had always made me awkward, breaking dishes and whatever else was in my way. The difficulty of doing the simplest movements did not discourage me. On the contrary, I immediately knew that I had something precious to discover. I volunteered as Heinke’s guinea pig throughout her training. The first incredible revelations came to me as miracles, something supernatural, a golden door opening to new possibilities for myself. I could now perceive how one can indeed change and overcome negative or limited feeling of oneself. When I first felt the connection between my head and my feet I remember bursting into laughter. I was also very surprised and delighted to feel sounds and vibrations through my feet, the incredible mobility of my ribs and shoulders. I enjoyed discovering new possibilities. Heinke was going back and forth to Germany so I looked for Feldenkrais teachers. I benefited a great deal from Francois Combeau, Jessie Lebovicy and Anne Marie Berger teaching.
It took me forty five years to simply accept my past, my difference. My life was a series of juggling and adaptation to camouflage my hearing disability, to create a wall between me and people; to make sure no one would ever cross it and dare ask me about my scars, my face.
A severe hearing loss of my only good ear forced me to face my hearing impairment My work as an English and a Foreign language trainer and coordinator was becoming impossible as I could hardly hear my students. I would go back home exhausted from all the strenuous effort of lip reading. It was now clear that I could not go on. I needed to find a solution.
I started looking for hearing aids and BAHA ( bone anchored hearing aids). As the product was still quite new in France and I was lacking information, it occurred to me to search TCS on the internet and this was the beginning of a wonderful adventure. I first found Amie Osborn’s beautiful website and she referred me to the TCS forum group. I was very efficiently coached by the TCS members list who almost all had the surgery and were very pleased with their BAHA. From there I went to Columbia, Maryland and attended the yearly TCS gathering. It was one of the most significant moments of my life when I entered the room filled with adults, children and babies who all looked like me. I had found a family, roots and a sense to my life. For the first time, I dared improvising in public as a clown and it was an unforgettable feeling to have all the little children of the gathering joyfully following my clown Zazimut on an imaginary trip to Paris.
At the gathering, I met Jim Hill, my soul mate, the imaginary elderly boy of my childhood. We immediately recognized each other and since that day have been corresponding. I wrote the Preface for his book Walls Of Stone – Living With TCS. I coached and translated into French The Open Pathway, his autobiography as a photo album for children. Today he is proofreading and encouraging me through the writing of this article.
I have also connected with a TCS group in Ales, France and have been active and participating as a guest speaker in medical panels of this very active Association Coline.
My four ears allowed for a complete career change. I could now diversify in a way I would have never dreamed of before. I designed and taught creative writing and cross cultural awareness workshops as well as English training courses for elementary school teachers. I trained teachers how to teach dynamic English to children. I also have been an interpreter for conference of the American and theatrical geriatrist Neomi Feil.
Enrolling in Myriam Pfeiffer’s Feldenkrais practicable program has been the most significant learning experience in my life. I went way beyond my limits and boundaries over the last three years and overcame many deeply rooted fears. Myriam made me aware of how I was constantly in a state of emergency while learning and she patiently taught me how to feel, to slow down, to be gentler and more accepting of myself. Every smile, word she said to me sank very deeply in me as many seeds that I preciously cultivate and that are still growing day after day. I also want to pay tribute to Carl, Jerry, and Richard for the generosity of their teaching and for having encouraged me.
I have been living in Israel since 2006. I turned fifty last December and feel I have reached a new era of my life. I have reconciled myself with my past. I am now teaching ATM in Netanya and learning Hebrew. In August, if God’s willing, I will be graduating as a Feldenkrais practitioner.
Guided by my intuition and the feeling that our paths were to meet, I searched Chava Shelhav on the internet and I called her for an FI. I went to her with a definite quest: I wanted to feel my face and its connection to the rest of my body. I took one look at Chava and I knew she was on for the adventure and that she was as eager as I was to search and discover new things with me. After the first FI, I wrote Chava an e mail to thank her and to express how I felt and what I learned. She then invited me to continue writing after each lesson. It was a wonderful feeling to sit down and actually put words to the sensory and highly emotional experiences and to know that I would be read; that I was an active partner in this search.
Last fall, Chava asked me if I would be interested in co-writing an article for the Feldenkrais journal/guild. I would write my story as a person with TCS and she would explain how she intervened in the FI to improve my self-image. The desire to read her was a great motivation to finish this article quickly, although she refused to give me any deadline. As a future Feldenkrais Practitioner, it is a royal way to learn how I can transmit my new knowledge to people with TCS and their family and make their path easier. Another dream of mine is coming through. Who will pretend my life isn’t a fairy tale?
In 2006, I was invited to participate in a TCS panel for families and people concerned with this rare genetic disease. A genetician from Necker Hospital in Paris explained in allegoric terms the genetic origins of TCS. He compared the gene causing TCS to a spelling mistake in a single word from a book of the DNA library. I was the final speaker. I placed my notes on the table, took a big breath and spoke in a strong clear voice.
The spelling mistake wishes to speak and to be heard. A spelling mistake cannot be erased and corrected without leaving a smudge or a scar. A child that is born with TCS carries the scars that cannot be erased. The scars leave a smudge that will never entirely disappear. I am asking all participants in this conference to become aware of the words they use to talk about us; because words will determine how we accept and perceive our self, our difference. Words can sooth and help us grow and overcome our difficulties but words can also harm, cause everlasting scars, and destroy our self-esteem. A single copy of a unique book with a ‘default’ is called a rare book and is worth a fortune. In a green meadow a four-leaf clover is considered as a lucky talisman. I therefore invite all of you to perceive us with TCS as invaluable rare books, as unique four leaf clover in a green meadow. You will see that it brings new perspectives and possibilities to our lives.
Throughout this panel I heard a lot about fixing, repairing and operating as early as possible. I have benefited greatly from science but I believe there are more simple and efficient ways in making meaningful improvement in your child life. It is called enhancing self esteem and self-image.
Self-image will endure in spite all the surgeries in the world. How many gorgeous people feel so ugly and unworthy of love; while the not so pretty women will feel so confident. I am sure that some famous movie stars have never been loved the way women with TCS are cherished.
Here is some advice and thoughts based on my experience and my training as a special education teacher. To meditate on and to apply without any moderation I promise won’t cost you a dime and will foster growth and joy in the whole family.
Parents:- accept your child as she is. If it is difficult to do, then work on your self. Seek professional help to overcome the feeling of guilt and a sense that you must repair your mistakes.
You may be concerned that your child will suffer and it enhances the guilt and uneasiness with your child’s difference. Think of it in this way. Who doesn’t suffer on this earth. Don’t we all learn from our sufferings and hardships. Think of all the children on earth who suffer from poverty, racial discrimination and wars. The idea of happiness is a modern concept. In former centuries children were forced to work under horrible conditions. We today should therefore rejoice at the freedom and happiness of our daily lives.
A child with a difference will learn to adapt to a handicap; compensating for the difficulty, while observing and talking to children, teens and young adults who have the symptom. I could see that we developed better social skills; finding a way to compensate for our facial difference. I saw little kids developing this at a very young age. It is called survival skills.
The more you will overprotect your child; the less he/she will be able to develop their own survival device. This is a much more severe handicap. Yes, it will be harder to integrate a group, change school, meet new people. Trust your child‘s ability to find their place.
Make your child an actor of the surgical process. Explain to him/her what will be done. Don’t do anything against their will. After all it is you child’s body you are talking about. Your child must feel they are the owner their body. Even in deciding on the day of the surgery is important. I suffered a lot from being deprived of that decision power:- of feeling that my body was in a doctor’s hands and not in mine.
Your child’s sense of time is not the same as parents. As parents you are projecting years ahead; how your child will be able to work, study, marry, have normal children. All of these are very pertinent questions and valid worries but your child’s preoccupation lies in the present. In facing a group of tough kids who will certainly laugh, or tease at the beginning of a new school year with a new teacher and new classmates. Wondering how painful the session will be; frightened; worrying about not being able to hear the teacher and understand the assignment.
Parents should be attentive to what the child is facing in everyday life. It is not easy to develop a happy balance between overprotecting your child and letting the child fight their battles without your emotional support.
Communication is a key factor in accompanying your child in a helpful way. Listen to what the child is saying; their body language; their expression of stress and fear.
Bare in mind that your child is doing the best they can, given the circumstances. Do not ask the child to compete with kids their age, to obtain the same school results. Your child with TCS will need twice as much effort to obtain the same results of average kids. They will need to face hearing impairment; a higher level of stress when the relation with the classmate or the teacher is difficult. The psychologist Maslow demonstrated that in order to learn and reach a higher level of thinking and development one must have the basic needs fulfilled:- food, a dwelling and basic security. When suffering from a facial difference one often feels in a state of imminent danger, which slows the learning process.
Another factor that parents tend to forget in their rush to fix things is how much the child is helping you. My parents had no idea how much I kept to myself so not to worry them, nor to burden them further. If you accept the child as a participant of the process, it will become a lot easier to find solutions. If the child is a thing that is manipulated: the child will feel like a victim instead of a participant.
Yes, I am a spelling mistake in a single letter from a book in a large library. I wish to speak, to be heard, to be listened to. A spelling mistake cannot be erased and corrected without leaving a smudge, a scar.
A child born with TCS carries the scars that cannot be erased. The scars leave a smudge that will never entirely disappear.
A smudge need not be seen as a flaw. A smudge can be seen as a droplet of water sparkling in the morning sun. A smudge can be seen as a four leaf clover in a green meadow. A smudge can be seen in the night sky as a bright star.
I am not just a spelling mistake in a letter of a word from a book. I am not just a spelling mistake that has been erased, corrected and smudged.
I am a droplet of water that sparkles in the morning sun. I am a four leaf clover in a green meadow. I am a bright star.
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