It was autumn of 2012. I was having problems concentrating at work (I was a psychotherapist) and my body ached all the time. My very thorough doctor put me through a series of extensive tests. He thought I might have Chronic Fatigue Syndrome. However, all tests came back negative. It was then I decided to speak about the elephant in the room, the one waving at me in her pink tulle tutu. Yes ,her. “Yoohoo , Katharine” she called to me ” time to tell the good doctor what you are finally brave enough to explore, your facial differences.” So I went for it. I look slightly different from most people, nothing major , just a few minor facial anomalies , but enough to warrant some investigation. My doctor then sent me to a neurologist, who then sent me to a geneticist. The decisive conclusion? I was diagnosed with Mobius Syndrome. Mobius Syndrome is an extremely rare congenital neurological disorder characterized by facial paralysis and the inability to move the eyes from side to side. I was considered one of the “lucky” ones. I could smile (at least with my lips closed) and I had 20/20 vision, even if I could not see peripherally. After I did some personal research I found that Moebius is thought to be an immune system disorder , hence my Chronic Fatigue like symptoms.
While I did not know I had Moebius Syndrome growing up among the beautiful and the privileged in my wealthy Montreal enclave, I did know that I did not look “normal” by their high standards. That alone was enough to make me feel different. The writer Andrew Solomon in his book “Far From The Tree” writes about wealthy families who have a child who is different. Andrew originally thought that money would help these children have an easier life, and in many ways it did (better doctors, private schools) but what Andrew found after interviewing these affluent parents and their children, was the pressure to be and look perfect made life very painful for these “different” children in their ” strive for excellence at all cost” families. This described my experience in my family of origin perfectly. Instead of being empathic or at least honest to describe my differences, my mother just told me that I was “bad”. What constituted the “bad” was unclear, but not looking perfect played a big factor. As well, a predilection for reading and music did not endear me to my extroverted tone deaf mother.
Add to that mix a slight speech impediment and a tendency, despite the impediment to always speak my version of the truth did not help matters. I remember one occasion when once again my mother was yelling at me for some real or imagined transgression I looked directly into her eyes and said “Good mothers do not yell” and she replied “What do you know? You are four years old! “
I knew instinctively that nurturing was not part of mother’s equation. I had hopes that school would be better, but the children at my school just continued the verbal abuse I was experiencing at home. My classmates called me names and laughed at me in front of my face. I had no friends and would eat my lunch in the girls bathroom stall. For years after whenever I was walking down the street and heard someone laugh I felt instinctively they were laughing at me. My survival now depended on my retreating to the safety of my mind as it was too painful to be fully embodied and present in my world.
I taught myself to read at three. Books became my best friends and my salvation. I tried my hardest to fit in and be “normal” but “normal“ wasn’t made for me. As I entered high school the bullying began to intensify. Many painful years ensued.
The summer before I began university it occurred to me that my troubles would diminish if I could somehow become beautiful. Then people might stop hating me for having committed the cardinal sin of being born different. Then perhaps I would begin to be deserving of love.
That was certainly the message I had received from my social climbing parents. Fitting in and conforming were my parent’s way of life, something they both tried desperately to impose on their misfit daughter. I was raised not to become a Doctor or a Lawyer, but to become someone’s wife. To get that title of Mrs. and that final rose, I had to become beautiful.
For their sake as well as mine, I tried. I had rhinoplasty and a breast reduction. I poured toxic chemicals on my hair turning my naturally brown jewfro locks into long blond hair that even Farrah Fawcett would envy. And it worked. Instead of being an object of their derision, I was now an object of their admiration. Women would tell me how much they loved my hair . Men began to ask me out on dates. The bouquets appeared and the Cristal champagne flowed, and my plan for the beautification of Katharine Angelina was complete. The ugly duckling was transformed into a swan. My work was done.
Except that it wasn’t. I was hiding another secret, one that made me feel on the inside as different as I had looked before on the outside. I liked women. I did. But what could I do with those feelings? All I wanted was to be accepted. Just once. So I dated all the single Jewish boys in Toronto (having moved to Toronto for graduate school) and was left each time feeling bored and disillusioned. Then karma called and his name was Bob, my future husband.
I had stopped using birth control when the idea of a child began to take hold. My child. Someone to call my own. Someone to frolic in the fields with, a little helper for choreographing Mother / Daughter Bob Fosse dance numbers. I became pregnant in July of ’91 and walked down the aisle in October of that same year praying, as I walked down that long red carpeted aisle that God would forgive me for betraying my soul’s desire.
Listed below my takeaway from those golden years:
1.It is much better to be feted than hated.
2.No matter how beautiful I was presenting on the outside, I still felt disfigured on the inside.
3.My blood sport was choosing partners (husband included) who would reflect my self-hatred back to me.
My daughter was born on April 11, 1992. I made the decision shortly after her birth to become healthy and own my attraction to women. I divorced my husband and began dating again. Suddenly, being in relationship where I was not respected no longer felt sexy. Healthy attachments were assuming paramount importance. I now required my “person” to show up, be responsive and attuned. Oh yes, and one more thing: to really really want to be present – here and now to help me celebrate this very special ordinary moment.
A few months ago I watched the news show 20/20. This particular episode featured young adults with facial anomalies who had the opportunity to have a renowned plastic surgeon repair their flaws pro bono. I was particularly taken with one young woman whose eyes and nose were unusually formed. I thought she looked lovely and compelling – much more interesting to look at than the classic cookie cutter version of beauty. Those feelings of appreciation of her unique beauty were for her though, and her alone. All I had ever wanted, was to have a great big toothy grin so I wouldn’t have had to witness that fleeting look that passed over most people’s eyes when they first met me. I abhorred that look. It singled me out and dismissed me, both. That look made me try even harder to charm and be witty so that everyone could see that I was not “special”. But trying even harder left me feeling depleted and desperate. I needed to accept my differences and come to peace with my flawed and fractured self.
I came to realize that only through surrender would I find the love I so craved, the love I had been searching for all my life. And so I surrendered –
My craving to be loved by my mother
My desire to be saved.
My wish to be beautiful.
And slowly I relaxed into my body and finally made peace with my crooked little self.
As I end this chapter of my story, I am reminded of the words of the late poet and author Raymond Carver that in closing, I would like to share here.
And did you get what you wanted from this life even so?
I did. And what did you want?
To call myself beloved.
To feel myself beloved on the earth.