I was born with Sturge-Weber Syndrome, with a large portwine stain birthmark covering the left side of my head and neck. Lots of extra blood vessels resulted in glaucoma and visible differences in my left eye. At 10 months, like many with SWS, I began to have uncontrollable seizures. With all other options tried and failed, at 18 months I was booked for major brain surgery. The surgeons planned on a hemispherectomy, or dislocating half of my brain; but luckily were able to locate the affected area and instead I had a piece of my opcipital lobe removed. Some vision was lost in the process but I’ve been medication and seizure-free since.
Growing up was a struggle, especially in a small town. My nickname from the bullies was “Two Face.”Wanting to fit in, I tried all the usual treatments and laser treatments but numbing creams made no difference. These laser treatments were too painful and thick makeup did nothing for my self esteem or my social acceptance. After moving to a small city I began undergoing laser treatments at a hospital that would do them with anaesthetic.
By age 21, I began to question what I was doing. Why did I need to go through the pain, the anaesthetic issues and the aftercare? Why go through all this to make ‘normal’ people like me and accept me? Why hide behind a mask of makeup? My boyfriend (now husband) adored me for me. He saw me for who I was on the inside.
I decided then and there not to seek further treatment nor to hide behind makeup and to this day I live by that. It’s not always easy; I know how I look has impacted my ability to get jobs, to find a close friend, to be accepted socially.
People are naturally curious about my condition, and I welcome the chance to answer their questions. I just ask to be treated with respect, like anyone else. My blessings are my husband, who is my best friend, and my two beautiful daughters who love me unconditionally. I remember taking my oldest to school and her classmates would whisper and point but she would answer their questions as diplomatically as I do.
Recently I’ve begun to connect with other adults with facial differences through instagram and other social media and it’s been incredible hearing their stories and knowing I’m part of a wider community. Now I say that my birthmark was really my first tattoo that fate designed for me.