When I was a small child, my grandmother took me to see The Elephant Man, a movie about Englishman Joseph Merrick. Joseph was born with severe facial deformities and was exhibited as a human curiosity in the late 1800’s. The depiction of Joseph Merrick shocked me, but not for the reasons it shocked others. For me, the shock was recognition. I knew Joseph Merrick. I was Joseph Merrick.
It was autumn 2013. I was having difficulty staying present with my clients. I felt exhausted all time, a bone tired kind of exhaustion that left me lying on my couch watching soap operas all day, too weak to open a book.
The time felt right to visit Dr. T, my general practitioner who was both kind and thorough. During my visit, I decided to come clean and address the elephant in the room, the elephant whose name was Joseph Merrick.
Ever since I could remember, my mother had told me that I was ‘bad’. What constituted as ‘bad’ was unclear to me, but I knew not looking like everyone else played a central part. It felt paramount for my mother to have a daughter who looked just right. Instead she had me, me with my crooked smile and my speech impediment.
The kids at school echoed the verbal abuse I was experiencing at home. They called me names and laughed at me. I had no friends and felt forced to eat my lunch alone in the girl's washroom. The torture caused me such psychic pain that for many years after I graduated, just walking down the street hearing someone laugh made me shrink inside myself because I felt instinctively they were laughing at me.
I hated going to school. I hated the way my classmates were treating me. I knew those girls and boys at school saw me as they saw Joseph Merrick. An oddity. A freak. Something less than human.
The realization was too much. Emotionally overwhelmed, I ran away. I ran from my feelings, right into the safe haven of oblivion through overeating and the obligatory deprivation. I told Dr. T of my anxiety and sadness, self-hatred and otherness that my looking different engendered in me. The exhaustion was new, the self-hatred as old as my beginning.
My doctor first sent me to a geneticist who wondered if I might have Down Syndrome. I told said geneticist I had a graduate degree in psychology. Her reply? “You would be surprised how intelligent people with Down Syndrome are!” Results? An unsurprising no to Down Syndrome.
Next I was shuffled off to a neurologist at Mt. Sinai Hospital who noticed unusual movement in my eyes. He then sent me to an opthoneurologist who got very excited as he told me I did not have peripheral vision. Exciting for the doctor perhaps, but traumatizing for me. Now I was not only exhausted but beginning to feel very scared. Was I losing my eye sight? As I left the hospital I thought back to when I was a three years old first learning to read, and remembered that I moved my head back and forth, not my eyes. Phew! I probably never had peripheral vision because why would I move my head back and forth if not for the reason that my eyes couldn’t? Terrific, I was probably not going to lose my eyesight, but what was happening to my body
Driving home from the hospital I grew more afraid and more triggered. As all those feelings of not being quite human rushed into my consciousness, I crashed my car into a streetlight. Luckily, I was not hurt but I felt a respite was needed before I continued on my journey. I needed to remind myself that I was not Exhibit A #7349. I was Katharine Love, a human being who deserved to be seen as such.
I was not a quitter, so a few months later, I once again went back to Dr. T. who referred me to a second geneticist who specialized in rare diseases. It was this geneticist who finally gave me the answer I was searching for.
What in fresh hell was Moebius?
The geneticist explained Moebius Syndrome is an extremely rare congenital disorder affecting primarily the sixth and seventh cranial nerves. Some people with Moebius Syndrome have autoimmune issues, as well deformities of the hands and feet. That explained why I could only smile with my lips closed, my inability to see peripherally, why I had flat feet with such skinny ankles, and most importantly, why I felt so perennially exhausted.
Dutifully I took the papers of information and looked through the photos of others with this disease. I was on overwhelm. This was my worst nightmare come to life. I could barely focus on the photos of men, women and children that my doctor insisted on showing me. She was so excited! “Finally!” she said. “Now you have people to whom you can relate! Here are people who look just like you!”
As I looked through the photos I was reminded of the Groucho Marx quote “I don’t want to belong to any club that will accept me as a member.” Was this really who I was? Was this really what I looked like? If so, I knew my haters were right to hate.
All I had ever wanted was to have a great big toothy grin so 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 at the same time.
It was a look I remembered well from my early university days, when I had to prove to my teachers and classmates alike that I was actually quite intelligent, even though I looked and spoke differently.
It occurred to me in my second semester of my first year that all my troubles might disappear if I could somehow become beautiful. People might stop hating me for being born different. Then, perhaps I would begin to be deserving of love.
That was certainly the message I received from my social climbing parents. 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 my parent’s sake and mine, I tried. I received a trifecta of plastic surgeries. Rhinoplasty, narrowing my weird wide bridge of a nose, a chin implant and a breast reduction. I poured toxic chemicals on my curly hair, straightening and colouring my naturally brown Jewfro locks into hair that even Farrah Fawcett would envy. Presto chango it worked!
Instead of being the focus of my classmate’s derision, I was now the focus of their admiration. Girls would tell me how much they loved my hair. Boys began to ask me out on dates. Bouquets arrived, champagne flowed, and my plan for the beautification of Katharine was complete. 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 thought I might be a lesbian, but what could I do with those feelings? I had finally found social acceptance and my family’s approval, and I wasn’t ready to give that all up just because I wanted to be with a woman.
I met Robert in February of 1989. It was certainly not love at first sight, but I had gone through most of Toronto’s eligible Jewish men and was beginning to feel a desperate need to have a child. I quickly became pregnant and walked down the aisle in 1991. I now had a child, a condo, and a husband. I should have been content, but I was feeling more and more disconnected from my husband and my supposed ‘happy’ life.
I met Cecilia through happenstance. She was recommended by a mutual friend who had used her services as a housepainter. I needed my kitchen and living room repainted, Cecilia came over to my condo for a consult, and literally the moment I saw her I fell instantly in love. I was finally in love!! But I was married… what was I to do? I made the difficult decision to start divorce proceedings.
By this time, Robert and I were living like roommates, still my asking for a divorce was a shock for him, and a sad but necessary next step for me. Once free, I began to date Cecilia. My daughter was accepting of my lesbian status and my relationship with CeCe. I opened up my own psychotherapy practice and CeCe and I had a few happy years together before we amicably parted in 2007. I dated a few woman in the years after Cecilia, but no one that captured my heart as hers did.
I was happy however, living with my dog and daughter in our light filled apartment, until the summer of 2013 when I started to experience my first symptoms of exhaustion, and my life as I knew it was over.
After years spent denying the obvious, last year on my birthday I had an epiphany. I could hate myself for the rest of my life, or I could accept my new normal, embrace my differences and come to peace with my flawed and fractured self. I choose the latter.
I realized that only through surrender and acceptance would I find the love I so craved, the love I had been searching for all my life, the love I needed to give to my battered and bruised inner child.
And so I accepted:
1. My craving to be unconditionally loved by my family would always be present in my consciousness.
2. My desire to look perfect was so ingrained into the fabric of my being that my feelings of inadequacy would never be eradicated. Softened yes, but never gone.
3. My burgeoning need to love myself was beginning to take precedence over my need to hate.
I made the decision to stop harming my body using food as my drug of choice, and began to feel my actual feelings that I had stuffed down for the last forty years.
As I enter the Spring of 2107, I continue my work of integration, and watch as something beautiful begins to bloom…
a friendship with my crooked little self.
- Katharine Love
Katharine Love is a retired psychotherapist who lives with beloved puppy Lucille in her adopted city of Toronto. You can read her blog at thefatjewess.wordpress.com