danielle and bianca natoni

It Doesn’t Help

A poem about Tourette Syndrome by ninth-grade student Bianca Natoni.

“I wish I had Tourette’s so I could say whatever I want
Whenever I want.
You’re acting like you have Tourette’s.
Look at her tweaking out right now,
She looks like she’s on drugs.”

It hurts.
A lot.
When you say something,
It hurts.
When you mimic our movements,
Of which we can’t control,
It hurts.
When you wish you had something
That any of us would gladly give to you in a heartbeat
It hurts.
Not because you wished you had it,
But because you’re not thinking of what the people who do have it go through.

Do you think we like it?
Do you think it’s convenient?
It’s not.
We know it’s annoying.
We know it’s irksome.
We know it makes you uncomfortable,
But do you think it’s any easier for us?
We have to live with it.

And I know, I know.
You wanna “help,”
But you can’t and you don’t.
It doesn’t help.
Nothing helps.
When you think you’re being helpful
Is when you’re actually being the most offensive.
When you tell us to
“Shake it off”
Or
“Stop”
Do you think that helps?
Do you think we want to?
That we’re doing it because we
Enjoy it?
Telling us to “stop ticcing” is just as effective as telling a
person with no legs to
Stand up.
It doesn’t help.
The amount of people who are uneducated
about Tourettes is
Unbelievable.
Society says:
“Never make fun of something that someone
Can’t control”,
But then turns around and makes jokes about Tourettes.
Why don’t we count?
Because we “really can control it”
Or “We’re just doing it for attention”?
It’s shocking how many times
I’ve been accused of
Ticcing for attention.

 

If people educated themselves about the disorder,
I wouldn’t have to be frozen in disbelief.
If people educated themselves about the disorder,
I wouldn’t have to be afraid of being stared at in public.
If people educated themselves about the disorder,
I could avoid getting the golden question of
“Was that a tic”
That is thrown at me 9/10 times.

Yes.
It was.
Assume it always is instead of asking every time.
That exact question is why people are
Scared to say they have Tourettes.
Because from then on you walk around with a huge sign on your forehead that says
Tourettes.
And any little movement you do that could be considered
Atypical
Reduces you back to it.
And that same question is what renews the
Embarrassment that comes with the disorder.

Because it is embarrassing.
Frantically shaking my head in public like there’s a bug in my hair
Is embarrassing.
Having crescent moons on my palms from where I
Dig my fingernails into my hands
Is embarrassing.
Not being able to turn my neck to the side because I jerk it around every 30 minutes
Is embarrassing.
Slapping my face as hard as I can whenever I feel anxious or stressed
Is embarrassing.

I get it, though.
It’s weird.
It doesn’t look right.
Watching people tic might tickle your funny bone,
But is it funny?
Absolutely not.
Can I blame you for wanting to laugh?
Absolutely not.
Can you educate yourself, so that you know why it’s not funny?
Absolutely.

It’s not funny
And
The giggling and gawking doesn’t help.
Educate yourself.