Moebius and Me
personal essay by Katharine Love
It was the fall of 2012. Fall was my favorite season, but this autumn felt different. I was having problems concentrating at work and my body ached all over. I dragged my exhausted body to my doctor who after much extensive testing diagnosed me with Chronic Fatigue Syndrome.
I felt relieved to have a diagnosis, even if there was no fast and sure cure. Due to my doctor’s diligence, he found out something else as well:
Moebius 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 lucky, I could smile (at least with my lips closed) and I had 20/20 vision, even if I could not see peripherally.
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 like everyone else.
That alone was enough to make me feel isolated. Andrew Solomon in his book ‘Far From The Tree’ spoke to wealthy families who had a child different from the norm. Andrew discovered their desire for perfection drove most of these parents to constantly criticize their children, trying to get these unusual children to look and behave exactly like them.
This was definitely what I had experienced in my family. Instead of being empathic and supportive, my mother blamed me for my differences. In addition, my love of books and music did not endear me to my extroverted and tone deaf mother.
I taught myself to read at three. Books were my best friend and my salvation. I tried my hardest to fit in and be normal, but normal wasn’t made for me.
When I was four years old, my mother yelled at me for some transgression of mine. I looked directly into her eyes and said, “Good mothers do not yell.” She replied, “What do you know? You are four years old!”
What I did know then was 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 bullying I was experiencing at home.
My classmates called me names and laughed at me. I had no friends and would eat my lunch in the girls bathroom. For years after, whenever I walked down the street and heard someone laugh I felt instinctively they were laughing at me. My survival now depended on my retreat to the safety of my mind. It was just too painful to be fully embodied and present in my world.
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 different.
As I entered high school the bullying began to intensify. Many painful years ensued. One day it occurred to me that my troubles would diminish if I could somehow manage to become beautiful. If I were beautiful everyone would have to stop hating me for having committed the cardinal sin of being born different. Perhaps then I would finally 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.
My deepest desire was to have a great big toothy grin. Then I wouldn’t have to witness that fleeting look that passed over most people’s eyes when they first meet 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 so different after all. Trying even harder left me feeling depleted and desperate, but for their sake as well as my own, I kept trying. I had rhinoplasty and a breast reduction. I poured toxic chemicals on my hair turning my naturally brown Jewfro locks into long straight blond hair that even Farrah Fawcett would have envied.
All of my hard work began to get results. Girls at my school now told me how much they loved my hair, boys at my school began asking me out on dates.
Bouquets appeared and Cristal champagne flowed, and my plan for the beautification of Katharine 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 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. I dated all the single Jewish boys in Toronto, each ensuing encounter leaving me feeling bored and disillusioned. Then karma called and his name was Bob, my future husband.
I became pregnant in July of ’91 and walked down the aisle in October of that same year praying God would forgive me for betraying my soul’s desire.
My daughter was born on April 11, 1992. I made the decision shortly after her birth to become healthy and claimed my attraction to women. I divorced my husband and began the coming out process.
Healthy attachments were now assuming paramount importance. I began practicing meditation, which in turn helped me to show up in my world ready to celebrate every special ordinary moment.
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.