Hi everybody!
Today's video is gonna be a little more serious and educational, but try not to worry - I'm
not going to make you feel like the world is going to end or anything, it's gonna be
okay.
I've been reading your comments and things as you post them, and I really like to hear
from you, and hear what you like and what you don't like about ... pretty much everything.
I just wanted to touch base on a recurring theme that I'm seeing in a lot of comments.
There's quite a few comments about my appearance, which I don't mind, they're good and bad.
Either way, you know what?
I'm fine, I don't care.
Mostly good though, so thank you!
But the two things I hear most often are: Number one: "You look like a beautiful elven
prince!"
Number two: "You look like an alien... (tongue clicks)"
And whether you believe the first, the second, or both, which is also fine - I'm just here
to explain to you why my face looks so unique.
I know it does, I'm not stupid.
But unique is not synonymous with bad, and bad is not synonymous with unique, and oranges
and apples, and toast and butter and (moans).
Basically, I have a genetic mutation called Waardenburg Syndrome.
It sounds scary when you say mutation, it sounds scary when you say syndrome, but it
literally is extremely minor, I function normally...
"normally", I'm getting into these ableist terms now, like...
I'm part of the X-Men - that's all you need to know.
Essentially, it effects my facial structure, the pigmentation in my body and my hair and
my skin and everything, and also my hearing!
I inherited this from my mothers' side of the family, so a lot of us on her side look
very similar, we have extremely similar faces.
And that's just sort of common for people with Waardenburg Syndrome - to look similar.
There are people halfway across the planet with a very similar face to me and I think
that's really interesting, because I'll see them online or out and about, which is rare
- I've probably seen three or four people outside of my family with Waardenburg Syndrome
ever, so it's really interesting when I get to see somebody and I know their struggle,
I get them, you know?
With my face, what Waardenburgs has affected is basically the width of everything.
So, I'm sure you've noticed that my eyes are spaced considerably apart.
And honestly, the way I think of this now is it's like telling someone they have a big
nose - I know!
I think it looks great.
I don't care!
But I want to just make sure you know everything that's going on here, you know?
I just want to make sure you guys know what's going on.
To cover a lot of ground all at once, it's widened my eyes, my lips don't have any cupids
bow, I don't know if you can see that...
I'm looking at the screen, that's taboo - but like, yeah!
There's no cupids bow here, right?
So it's more flat, which means whenever I do big drag lips, I have a really nice 1940's
smear, which makes me very happy.
As far as the spacing of my eyes goes, because this is usually what people target and viciously
attack about me, it took me a long time when I was younger to learn to ignore people's
comments because the more I acted, you know, hurt, and the more I was visibly wounded by
these people, the more they would do it.
So my confidence was whittled down to almost nothing until I started working with make-up,
which is why I love make-up so much!
Because I can alter my face, but I've come to love my eye shape now.
It was something before that I felt you know, I can put make-up on and it's different!
but now I like my eyes regardless of whether I have make-up on or not.
I like them both ways.
My nose, too!
I don't know if you guys see this, this little cute little thing on my face here.
So there's no bump or bridge or ridge - it's just sort of a slope.
And that's from Waardenburgs Syndrome, it gives you this sloped sort of elven shaped
nose.
It's really convenient for me, seeing as I'm actually, you know, an elf.
So everything else with my face, besides the width of my eyes, my lip shape, and my nose,
is just normal genetic traits, just from my background.
Another thing that Waardenburg Syndrome does is drastically increases the rate at which
your hair grows.
That means this hair too, because when I moved to Toronto, everything was almost buzz cut,
except for this which was about here.
This happened in about a year, and I've had one haircut, so, that's like a foot, I think.
I'm not really positive, I don't measure, numbers are not my talent, okay? but I know
my hair grows very fast, I have to pluck my eyebrows every day, I have to shave every
day...
That's why in some videos, I look like Thor, and in the next video I look like a fairy
elf princess, like .... So moving on to the pigmentation in my body!
The number one thing a lot of people will notice immediately is the eye.
The eye colour.
That's my natural eye colour, it's been that way since I was born, it's just basically
it's the absence of colour in my eyes, it's blue, but it's very translucent, so that's
why with direct sunlight they look extremely bright and it's not that I've photoshopped
them, it's not that I am wearing a coloured contact lense, it's just the light is reflecting
a thousand different ways at once.
Another thing that's interesting is the white forelock of hair, so I'm looking in the camera
right now and I can't really ... ALB just bleached my hair last night, thank you lady,
I love you.
I have a natural white hair growth about right here, this all naturally grows in completely
white.
And it's been that way forever, the rest of it naturally grows in a dark brown.
But again, I just coloured my hair so, you can't really tell, but right here is all white
- like Rogue!
from X-Men, if you guys know Rogue, that's me, that's my sister, that's my mother, it's
me!
Now, lastly, and I feel pretty importantly, Waardenburgs Syndrome affects your hearing,
right?
So, it affects everybody differently.
For example, myself, I'm deaf only in my ... ( checks ears for hearing ) ... left ear!
My mother, for example, hears out of both ears, and she's got Waardenburgs Syndrome
as well, but my cousin is completely deaf, and he was born that way as well.
So everybody with Waardenburgs Syndrome, for everything - including facial structure, hearing,
pigmentation, it's always a degree.
There's a degree to everybody.
It doesn't affect my life too much, the only time when it really makes things difficult
is in large open classrooms, for example, during high school I had quite a bit of trouble
with that but I made it work.
Gymnasiums, there's too much echoing happening, in large crowded restaurants, or bars, or
clubs, I don't enjoy myself because I don't know what is happening at all.
There's so much background noise, and it's like, imagine if every sound you ever hear
is coming at you right here, and it's all right here, that's every day.
So, if I'm in a large crowded bar, I don't know who is saying what, where it's coming
from, I have no idea what's happening.
So those situations make me feel really anxious and panicky, because I feel like I have no
control over what's happening because I don't know what is happening.
So that's why I tend to prefer quieter, smaller activities, because I can understand what's
going on.
Similarly, if you're walking with me, for example, and you're on my deaf side, I will
run into you.
Many times.
It's like, I can see you, I know you're there, but my body isn't getting the right cues,
it's not understanding where you are, your footsteps are in a certain spot.
So I kind of swerve this way constantly, it's tricky but it doesn['t really ... I 've got
it under control, it's just if you walk right next to me, I'm gonna hit you.
I really just wanted to make this video because I felt like when I was eleven and twelve and
thirteen, and when I was really struggling with my confidence, with my appearance, there
was nobody that I could find anywhere online in the media, anywhere, that had a face like
mine.
So I just want you to know that we exist, we're out there, we have beautiful faces,
you have a beautiful face, I want you to know that you have a beautiful face!
And if you don't think you do, you will one day, and I can't wait for that moment to happen
for you.
Because, it can be very hard to get there.
But there's no feeling like it, really.
I mean, I'm sure there is, but, it's just, I feel achieved!
There's something really empowering about looking very different from everybody around
you.
And I don't know how to explain that to somebody that's self conscious about it, but you will
find it one day I think, and it's really exciting.
So, that's all I can really think of to explain right now.
But if you guys have questions, feel free to leave them in the comments, I'll get to
them, I promise.
I Love talking to you, if you're curious though you can always read online!
There's lots of information, there's many types of Waardenburgs, I went over very basic
kind of broad spectrum kind of thing, so definitely if you have questions or you're curious, there's
so much information out there!
I'm going to put some links in the info box below that you can check out if you really
are interested.
That being said, if I find any hateful comments below, I will be removing them because I expect
lots of young people with Waardenburg Syndrome to find this video, and I do not need your
hateful thoughts poisoning their mind and poisoning their thoughts on themselves.
That's just not ... it doesn't need to happen.
I would love to hear any questions you have, but just be respectful, because if you are
not, I will just remove it, and that will be the end of it.
I just don't have any patience for that anymore.
So, um...
I guess I'm finished.
Until next time, I will see you all later!
I hope you have a wonderful evening and everything...
bye!!
(grumbles) hair up, or hair down..?
This is the struggle.