Without assembly me, it’s straightforward to make assumptions about my life.
Because I don’t seem like most individuals.
Over the years I’ve had many individuals come as much as my dad and mom, husband, and myself to ask questions or to move unkind judgment. Sometimes individuals are genuinely sort with their curiosity, however as a rule – there’s simply as a lot stated of their uncomfortable physique language and unsightly tone as there may be of their phrases.
Here are just some that I’ve heard:
“I thought you were the girl who had something ‘wrong’ with her face.”
“How’d you burn yourself?”
“You’re so brave for leaving your house. If I were you, I couldn’t do it.”
“Doctors can fix that. Have you tried plastic surgery?”
“Is your husband beating you?”
“You’re too ugly for love.”
“Of course you’re beautiful, but you’d be more beautiful if that thing weren’t so prominently placed.”
Yet, only a few (whereas making assumptions) get it proper.
And that’s the issue with making assumptions. That’s the issue with leaping to conclusions.
I used to be born with a port wine stain birthmark.
But being born with a port wine stain birthmark – particularly on my face – isn’t essentially what you assume it means, each medically and personally. And there are 10 issues I would like you to know earlier than the flawed assumptions are made about my life and situation, and presumably the lives of others.
1. Three in 1,000 infants are born with a port wine stain birthmark – and that doesn’t embody some other varieties of birthmarks.
2. I’m not courageous for leaving my home. I’m simply dwelling my finest life at Target, similar to you. I’m not courageous as a result of I look “different” or as a result of I’m somewhat extra medically complicated. This is my regular. It is probably not your regular, however it’s mine…Purple face and all. Stares, sort questions, harsh feedback and all. I don’t know life any in a different way. This isn’t what courageous appears to be like like.
3. A port wine stain isn’t “just a birthmark.” It’s a lot greater than a pores and skin pigmentation factor. Instead, it’s brought on by growth of blood vessels beneath the pores and skin. And in my case? These blood vessels go all the way in which to my mind, affecting my gums, enamel, nostril, ear and eyes alongside the way in which. (But we’ll come again to that in a bit.)
4. My birthmark always helps me shield my coronary heart. It’s a steal of a deal: “Get one birthmark, get a kindness detector free!” When folks have a look at me, I sometimes get their on the spot, intestine response to my face. Do they stare? Do they make a impolite remark? I get to see folks in a singular state of affairs that most individuals don’t. And let’s be actual – what lady doesn’t love a great deal? Especially when it advantages her coronary heart.
5. It’s a free accent I get to rock my complete life! I imply, I really like the colour purple – so what’s to not love?
6. Doctors can’t simply “fix this.” It’s not that easy.
I’m 27 years outdated and I’ve had 53 laser therapies on my birthmark. And whereas sure, with every remedy my birthmark will get somewhat lighter, that’s not my finish purpose of the therapies. In truth, I just like the purple.
My purpose is to verify the birthmark stays wholesome. Without the therapies, the birthmark can develop blebs, my pores and skin texture can change, I can have extra symmetry points than I have already got, and it might bleed at random. The purple? I actually don’t thoughts it. The different stuff? Yeah, let’s fear about that.
7. I’m positively not “too ugly for love.” And my husband? He all the time thinks I’m the most popular girl within the room.
8. Because my birthmark’s blood vessels have an effect on my mind and eye, I’ve a uncommon situation referred to as Sturge-Weber syndrome (SWS). That means I’ve had glaucoma in my left eye since I used to be 8 years outdated, understanding I can go blind if I don’t search out remedy, and I’ve had migraines since I used to be 6. Lots of kids with this situation even have seizures, and a few are instructed they’ll by no means stroll or discuss. My type of SWS is gentle, but it surely’s positively there. But even with out the SWS – my gums bleed, I get nostril bleeds, and all my higher enamel on the left aspect are root canalled due to problems with the port wine stain. It’s simply not a easy situation. It’s not only a birthmark.
9. I add a little bit of colour to folks’s lives round me! Not solely does the purple add a splash of colour to my pores and skin, but it surely additionally provides a splash of colour to my life. And with my humor and character? There is all the time a narrative to inform!
10. Nothing is flawed with how my face appears to be like. I don’t really feel the necessity to disguise my pure look. I’m assured in who I’m, as I’m. And I don’t simply really feel lovely – I’m lovely! I like what I carry to the desk, and I gained’t change who I’m to make others extra comfy. I’m superbly and splendidly made! Birthmark and all.
I perceive individuals are interested by how I look. After all, I don’t seem like the common girl. I imply, half of my face is purple.
Curiosity is regular. In truth, it’s wholesome! Curiosity helps us be taught and develop.
But right here’s the deal: Curiosity ought to by no means get in the way in which of our kindness.
Sadly, when folks meet me or see me out in public, staring is the norm – and so are awkward, unkind feedback with harsh tones. Why? Because folks typically see my birthmark first as an alternative of my humanity.
If you ever see me and need to ask me questions – I’m completely open to them! I’d love that will help you be taught and perceive what you’re seeing.
But as an alternative of leaping to assumptions or having a one-way staring contest at my face, right here’s how one can begin the dialog: “Hi. My name is _____. Do you mind if I ask what happened to your face?”
But after you ask me about my face, please don’t neglect to ask me what my identify is, or if I’m having a great day.
Because simply as a lot as I’d like that will help you be taught and perceive what you’re seeing – I’d additionally like to make a brand new buddy.