“I have a facial difference on the left side of my face.
I have a facial difference that I cover daily.
I have a facial difference that I have been trying to write about for MONTHS and have not had the courage to finish. I have not had the courage to show my facial difference. Why? Because the town I live in now, well, they have not known me since I was little so most of them have no idea it’s even there. Am I scared of rejection? No. Am I worried people will pity me? No. I’m worried that I will then be dubbed as ‘the girl with the birthmark,’ like I have been dubbed so many times before.
Today I found the courage to share this, maybe because it’s my birthday and I’m just in a better mood, I don’t really know, but here we go…
My facial difference is referred to as a ‘port wine stain birthmark.’ I will spare you the medical term for it because it’s spelled with way more letters than it should be. I think whoever named it just threw some letters together and went with it I will however provide you with the medical definition of it: Port-wine stains are a kind of vascular birthmark, meaning that they’re related to the skin’s blood vessels, about 3% of people who have a port wine stain on the face, this same mutation causes Sturge-Weber syndrome, a condition that affects the brain.
Yep you read that right, I am part of a community that makes up 3% of the world AND yes, I have a mutation. The first time I read that I literally laughed out loud. ‘Mutation.’ Really?
So no, I did not get brutally murdered in a past life, my mom did not spend too much time in the sun while pregnant, I did not get severely burned, I did not get my tail beat, I did not get into a car wreck, and yes, I am aware there is ‘something’ on my face and no, I cannot wipe it off.
I have been having laser surgeries since I was a few months old. They used to turn my birthmark this dark purple and I would have to stay out of school for two weeks. The older I got, the more comfortable I got with myself and the more frustrated I became with the laser procedures not working like I had hoped. Don’t get me wrong, they kept it light and that was just kind of it. Whenever I was younger, they would put me to sleep for the laser but the older you get… yeah, they don’t put you to sleep and THAT MESS HURTS! It feels like someone is snapping about 1000 rubber bands on your skin and then holding a lighter to it. I decided when I was around 12 or 13 to stop the laser. I didn’t want it. I was confident.
Y’all, I used to not really cover it. When I was in high-school, I wore powder but that was kind of it. I never felt the need to cover it. I did have the select few that used it as an easy target to make fun of me, but the circle I kept, they never made me feel any less. I had a boyfriend at the time who would literally slap the stupid off of any guy who made a disrespectful comment. I had some of the best friends who would have my back, no questions asked. I genuinely have to credit them for my ‘I don’t care’ attitude I so needed to have back then. I wish I still had it now, but we will get to that later.
I have been called so many names. Two face, Jupiter (big red spot, get it? ), red face, half face, ugly, scary, Halloween costume…the list goes on. I have had people tell me ‘I’m glad my face doesn’t look like that.’
There were some MEAN girls who told me the guy I dated in high school was only with my because he felt sorry for me, that I would never get married, have kids, or have a career. I look back and laugh now because of how WRONG they were!
I got used to the stares and always expected the questions. Y’all, MOST people with any sort of difference DO NOT MIND answering any RESPECTFUL question you may have. I know I would much rather someone ASK instead of staring a dang hole through me. I HATED being stared at and pointed at. It is rude. Also, a lot of you probably think people can’t hear your whispers? UHH WE CAN! You aren’t quiet! What’s so bad is…it’s 98% of the time…it’s ADULTS! Kids usually just ask; they have no filter. I used to love answering kids’ questions when they would ask. Their parents would look mortified, but I would do my best to assure them I was not offended and was happy to answer their questions. I wanted them to be aware of differences and be comfortable in the presence of someone with a difference.
Fast forward to a few years after high school… life starts to happen and my circle and I, we all went our separate ways. That is when I truly started to struggle. I didn’t have my comfort zone anymore. I didn’t have my friends in my corner at parties to help protect my feelings, I didn’t have the boyfriend to scare the mess out of people on my behalf…it was just me. It began to really take a toll on me. I began to cover my birthmark. I used the best of the best make up and if you didn’t know me before, then you would have no idea what was hiding underneath. I rarely mentioned it. I rarely shared my story. It was almost like it didn’t exist. I started to find my confidence again… or so I thought.
I was still ashamed, embarrassed, and unhappy with myself. I had a few years of some downright ROUGH STUFF happen and I felt myself starting to feel sorry for myself… I knew I had to do better. I owed it to myself to get back up and start building myself back up. I couldn’t rely on others to do it for me. I had a daughter who looked up to me and the things I would say to myself, I would NEVER say to her or want her to say to herself. I knew something had to give.
I met my now husband, moved to a new town where nobody knew who I was, I was able to give myself and my daughter a fresh start. I still covered my birthmark because nobody here KNEW I was hiding anything, except for Jacob of course. He knew it was there and what I had dealt with before. He does his best DAILY to remind me he loves me and thinks I am beautiful regardless; I am just stubborn. I still try to suppress my issues with how I view myself, but I am slowly getting better.
I’ve slowly started being active on the birthmark pages again, I’ve started sharing more of my friends stories in the birthmark community, I am proud to associate myself with these strong men and women. They all have such amazing stories and I am truly blessed to call them my friends!
I have started back regular laser appointments because some birthmarks are not just ‘cosmetic’ issues. They can cause a disease called Stuge-Weber Syndrome. Sturge-Weber syndrome (SWS) is a neurological disorder marked by a distinctive port-wine stain on the forehead, scalp, or around the eye. This stain is a birthmark caused by an overabundance of capillaries near the surface of the skin. Blood vessels on the same side of the brain as the stain may also be affected. The side effects of SWS can be very dangerous. I lost a good friend, Paul Siegel, to the disease due to the seizures it caused. I myself do not have SWS, however, I do have to go to the eye doctor to check the status of glaucoma in my left eye.’
I am writing this today as a turning point for myself, to start uncovering it again, slowly but surely. If you see me out and the majority of it is covered, just let me be. This is going to be a process. It is going to be very tough for me.
I know that my facial difference is minor next to other physical differences and disabilities out there, I know that it could be worse.
PARENTS- talk to your children about disabilities and differences. Let them know to BE KIND to those who may look a little different. Tell them a simple smile is worth 1000 words. PLEASE tell them not to laugh or point. I know sometimes it can be hard not to stare but tell them to try really hard not to. I know a lot of parents think their child ‘would never do that,’ but I see it every day, they do.
Working in a special education classroom has really opened my eyes and encouraged me to start finding my confidence again. I work with kids everyday who work so hard to make sure their ABILITIES AND DIFFERENCES are NOT what define them. How can I continue to teach them to see the best in themselves if I am not doing the same thing? I have to make a change.I owe it to my girls, husband, family, friends, and the kids in my classroom to start embracing the difference God gave me.”
This story was submitted to Love What Matters by Amanda Byram, 29, of Georgia. You can follow her journey on Instagram here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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