Katharine Love

It was autumn of 2012. I was having problems concentrating, and my body felt enervated and exhausted both at the same time. It felt like a good time to visit my very thorough doctor, who 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, that elephant. "Yoohoo! Kate," she called to me. "It’s time to tell the good doctor what you are finally brave enough to explore, your facial differences."

So with great trepidation, I began to share my story. I look slightly different from most people, just a few minor facial anomalies, but enough to warrant some major shame, which was why it was so difficult for me to bring this up with my doctor. 

My doctor sent me to a neurologist, who sent me to an opthoneurologist, who then sent me to a geneticist. The decisive conclusion? Moebius Syndrome.

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 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 additional research I found that Moebius Syndrome is thought to be an immune system disorder , hence my Chronic Fatigue 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 very 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 from the norm. 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 weird. What constituted my weirdness was unclear to me, but not looking perfect played a big factor. As well, a predilection for reading and music did not endear me to my extremely 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!"

What I did know instinctively was that nurturing was not part of my 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 often eat my lunch in the girls bathroom stall.

For years after I graduated from high school whenever I walked 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 just too painful to be fully embodied and present in my world.

I had taught myself to read at a very young age. 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 many painful years ensued.

The summer before I began university it occurred to me that my troubles might diminish if I could somehow become beautiful. Then people would stop hating me for having committed the cardinal sin of being born differently. 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 nor a lawyer, but to become someone’s wife, and to get that title of Mrs. and that final rose, I had to become beautiful.

For their sake as well as mine, I tried. My mother encouraged me to have 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 magically, 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 Kate 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. And 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 never used birth control because I had thought of myself as some type of sub human, someone that couldn’t do what other ‘normal’ women could do. Then, miraculously I became pregnant.  

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 seeing a psychotherapist.  

After much hard work, I found that being in relationship where I was not respected no longer felt sexy. Healthy attachments were assuming paramount importance. I now required my partner to show up, be responsive and attuned. Oh yes, and one more thing: to really really want to be with me – so that we can both present and vulnerable to and for each other.

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, all I had ever dreamed of, 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 but just like them. 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 and acceptance would I find the love I so craved, the love I had been searching for all my life. And so I accepted -

1: My craving to be loved by my mother would always be present, as long as she was alive and perhaps even after her death.

2: My desire to look like everyone else, especially to have that big toothy grin.

As I worked very hard to integrate these painful emotions, an amazing thing happened. I began slowly to relax into my body and made friends with my crooked little self.

I’m ending this chapter of my story, I am reminded of the words of my favourite poet and author Raymond Carver that in closing, I would like to share here.

Late Fragments 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.