On hapiness.
20:50
I was to my
new therapy, only a second meeting, when it was said.
“Well, you
have to let yourself feel grief. Be scared. Be afraid.”
And it got
me thinking, cause it’s not the first time I was told this when I confess I do
not cry. Like, at all. Like people think I need to be scared, like it’s taken
for granted I MUST be scared.
The thing
is. I am *not* afraid. I worry. A lot. I overthink. I can't sleep. But I am not
scared.
It's sad,
when you look at it - someone so used to pain they are not scared of their
whole future life being pain, worse pain. But it is what it is.
I am okay
with my chair. I am happy I'm on my chair.
And that's
what people can't seem to understand.
I have a
stalker. My relationship, one where I ended up raped, abused, severely beaten
up, was as you can imagine a rather dramatic thing, with a rather dramatic
ending. I cut all the ties connecting me with my ex – except my facebook
account. How do you ever chance your facebook account after something like
that? I blocked her, that was all I could do.
But I
forgot she had friends, simply cause for three years she didn’t let me have
any. And one of her friends (at least I think it’s her friend) is actively
stalking me. And by stalking I mean obsessive checking my account, liking
posts, always lurking – and messaging me. I also met her couple of times
outside, but she was never trying to approach me, so I let it be.
Today my
stalker found out I am on a wheelchair, and started to write a huge soliloquy
about how sorry she is. And me, being my borderline self, and having no self
control whatsoever, flipped my lid. Cause it’s my big pet peeve – people saying
how sorry they are I am disabled. I wrote her a message, as nice and proper as
I could be (which is not much usually, let’s be honest) telling that there’s no
need to be sorry because I am happy, and I refuse to be treated as worse.
And she was
SOOOOOO SHOCKED. She couldn’t comprehend I could be a wheelchair user – and
happy. Happy??? I should be weeping, mourning my lost legs, I should be
suicidal and seeking active help.
We all
should, shouldn’t we? How many times had you someone expect you to be sad
because you are disabled.
Surprise! I
am not sad. I am happy. I live a full life, with wonderful friends, great
family, travelling, hobbies, nice clothes and pretty makeup and fucking awesome
wheelchair gear. I am perfectly okay with being an EDS baby. Sure, there are
bad side, a shitload of them. But I am not gonna be stopped by that.
I live with
chronic depression, caused by EDS. And I am not gonna be stopped by that
either.
We are
normal people. We live normal lives. We are happy, we are sad, we are mad, but
we’re not mourning the fact we’re spoonies like society expects us to. WE ARE
NOT WORSE. We are just as worthy as an abled person. It’s that simple.
I refuse to
be told I am supposed to be mourning. Yesterday I got officially diagnosed with
EDS hypermobile type 1 or 2. An I am celebrating, cause official diagnosis
equals a whole lot of benefits. And yes, I am gonna have heart issues, I am not
gonna walk again, I am gonna be in pain my whole life and I am not gonna be able
to be who I wanted to be AKA teacher and interpreter cause I’m losing hearing
and my hands are in very bad state already. AND I AM HAPPY. It’s May. There are
flowers, I have lilacs in my room and I can feed my bunny fresh grass. I am
going back to Uni in September and I have a date next week. My hair is long
enough for updos and I bought killer pink-ish nail polish. I live. I am gonna
live. I am gonna live till my illness kills me, but I am not gonna be sad. I am
a person who happened to be born with a bad gene. So is my sister, and so is
lots of my friends. And this is not who we are.
I refuse
for it to define me. I do define myself as a wheelchair user or EDS baby on
social sites, I do, just as I did with BPD and autism before my official
diagnosis. It’s simple – easier to find people like me this way, easier to
connect. That’s why I have EDS in my tinder profile – as it made me meet a
great girl who also has EDS and we probably would never meet irl among
thousands of people on streets of the city. But I refuse for my illnesses to
decide what I can or cannot do or who I’m gonna be. You can bet your ass I am
gonna try that art school before my hurting hands stop me, and I’m gonna try
interpreting before I go deaf. And I’m gonna wear short sleeve even though I
have huge scars and I’m gonna go out and laugh and smile even though – and BECAUSE
– I am on a wheelchair.
And I am
not gonna cry cause this is who I am. But there are going to be spoonies who
cry. Who mourn. Who are sad and depressed BECAUSE they’re ill. But then they’re
gonna go out and be happy. And that’s what I want all you abled folks there to
understand. That is what you cannot fathom. We are just as whole as you, and we
are just as able to have a range of emotions not connected to our disability as
you do.
Cause guess
what? We’re people too.
*mic drop*
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