I Have A Facial Difference Called Sturge Weber Syndrome, And No I’m Not A Scary Monster Or Villain

“‘Hey look it’s Two-Face from Batman!’ I can still remember the kids at school yelling that at me as I ran up to the school that morning.

I was born with a rare neurological condition called Sturge Weber Syndrome. I have a large port-wine stain birthmark on the left side of my head. What many people don’t realize, though, is it’s not just a birthmark. With the syndrome, there can be many complex conditions associated with it depending on where it is located on the head or body.

The true struggle for my parents was learning to deal with the staring and the questions. My mother recalls people asking if I had been burned. She also recalls a gentleman coming up at the grocery store and asking if she needed help escaping an abusive relationship, due to her baby’s ‘bad bruise.’ I learned my patience and kindness to others from her, as she was always stoic and would explain my condition. Soon, everyone in our surrounding area knew of Chelsey and her birthmark.

The complications of this syndrome became more apparent as the seizures began for me around a year of age, from a simple jerk to seizures to full grande mal where I would be lurched backward banging my head and flailing on the floor. Every medication was trialed, even ones not yet available, some shipped from the states. My health suddenly began to decline quickly as the calcification of my brain continued with the multiple daily occurrences of the seizures. The doctors were at a loss and began to prepare my parents to say goodbye as I lay lethargic in bed, fevers, and infections pushing my body to the brink.

Thankfully, though, I would be flown to the sick children’s hospital in Toronto and have life-saving brain surgery at 18 months old. During the last few tests and imaging, they were able to determine the exact area of the brain and I was scheduled for a procedure only done once before there. After a 6-hour long surgery, they removed the piece of brain that was malfunctioning. My parents always have to tell me they walked right past my bed in recovery, as I was unrecognizable with all the blood loss, my birthmark completely gone as I lay there amongst many tubes and bandages.

I had to learn everything again, from walking to talking but after a couple of days, I was already singing and clapping along with any song. I was seizure and medication-free and count my blessing daily for that. Statistically, I wasn’t supposed to live through it. If I did, I wouldn’t have the cognitive capacity of my peers.

School was just as expected: my fellow classmates were initially scared of me. I was scared at first to go but thankfully, I had such incredibly caring teachers. I was never left out or made to feel like I wasn’t part of the class. As the years went on, I would make friends, and people were comfortable with me. I learned at a young age to educate and advocate, stopping to answer questions and smile at the stares and ogles.

Then a moment in my life I know I will always remember happened. The release of a certain superhero movie. As I watched the villain step out into the light and show his acid-burned face that looked exactly like mine, I knew my life would change forever. The very next day, I walked into school and the bullies sought me out, proud of themselves, and they began the chants and name-calling. I would be known as Two Face.

It didn’t help then I was also receiving laser treatment for my birthmark. I would come to school with pencil eraser sized purple burn dots all over my birthmark. I was about 4 when I started, and to say they were traumatizing is an understatement. They could only do small patches at a time as I cried and screamed in pain. With each snap, a dot was burned onto the skin as the laser went deep into the skin to break up the blood vessels of the birthmark. The numbing creams did nothing as all the extra blood flow made my left side very sensitive. I had to wear silly eye coverings and couldn’t see anything as I waited for the first snap. The dermatologist that did them in his private clinic would tell my mother I was causing a scene, as you could hear me screaming all the way out into the waiting room. I was even held down by his assistants to the point I couldn’t breathe as I screamed for them to stop. Thankfully after that, my mother said it would be my decision to seek treatment, as this wasn’t worth it for the emotional toll it took on me.

I would go back and do laser as I got older, as I just wanted to fit in, some treatments at private clinics that offered anesthetic, and then I was flown to Boston to their Shriner’s Hospital and had them until I was 21. The entire time I did them though I felt like was going through the pain for others. This wasn’t who I was or what I wanted. It was then I walked away from the world of lasers, covering up, and wanting to look like everyone else.

I struggled in my early twenties as I fought a lot with depression, self-acceptance, and self-love. Everywhere I turned, anyone who was different was portrayed as the bad guy or they should be cast away. They didn’t deserve a role or even love, as they were just the doomed monster. I didn’t really have any friends and felt like an outsider with anyone my age. I couldn’t connect with peers as all they wanted to talk about was their hair, and their makeup, and dating.

Luckily, I found my husband through a mutual friend, and as our relationship grew, I began to do more self-discovery than ever before. The real struggle I found in those early days was allowing myself to be called beautiful when I myself didn’t believe it. Pushing down the boundaries of the regular beauty standards, I slowly got comfortable dealing with the questions, talking to people about my condition, and advocating for my rare syndrome.

Now as a mother of two, I strive to show the world what it’s like from someone with a facial difference’s point of view. We aren’t the scary monsters or villains a lot of media and social situations have led us to believe. It brings me such excitement when I see someone who looks different accepting that and rocking it for the world to accept and love!

For a couple of years now, I have been an ambassador for a couple of organizations for individuals with birthmarks and facial differences. It is a goal of mine to be there for others when they are struggling along their journey as I was. Though many of us have battle scars either physical or emotional, we are the true warriors. I believe half of the battle is learning to see yourself in the uniqueness your difference brings you. We are all such incredible beings, and we all need to world to see we don’t all have to look the same to conquer or to succeed.”

This story was submitted to Love What Matters by Chelsey Peat from Alberta, Canada. You can follow their journey on Instagram and YouTube. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here.