Meet Alex.
14:50
I was
hesitating a lot before I got to writing this. I tried blogging so many times
and besides Tumblr it never lasted more than couple of posts. I’m not the most
reliable person out there you see. And I thought that I have nothing to say.
But that’s
not true. I have lots to say. And I am very angry. Maybe it’s true the tiniest
people are most angry ones.
I am gonna
talk about life with a chronic illness and disability, just that, just my
struggles and thoughts, as I have a lot of both. I talked about it a lot on
both Tumblr and Vent app, but I decided no, I need more, I need more people to
see what I have to say, cause world needs a massive change. And we’re not gonna
be that change if we keep silent.
I am 21
years old from Poland, diagnosed with EDS (Ehlers-Danlos Syndrome) or similar
collagen deficiency syndrome a week ago. I went through 7 years of living in
terrible pain and being undiagnosed cause world kept telling me my pain is not
real. But it is real, and now I have a proof for that, and with that proof I
can be even more vicious when fighting for myself and all spoonies here.
I have
minimal hypermobility in my joints – I keep twisting my ankles and wrists but
nothing besides that. My joints and back hurt a lot, my skin is paper thin, my
wounds won’t heal and my scars get keloid. And lots more, but I’m not here to
tell you about my symptoms, let’s save it for the doctor’s office.
What is
important: my name is Alex, I am a tiny genderfluid girl with blue hair and
blue wheelchair.
I jumped from having invisible disability since I was born to
very visible one when walking got too hard. Sometimes I use crutches and you’re
probably gonna catch me clicking my wrists and fingers a lot. I know, the sound
is terrible.
I am an art student who had to go on a leave due to inaccessibility
and bad attitude towards disabled people at my uni. I am a writer, I complain a
lot, I whine a lot, I am mad a lot. I have psychotic Borderline Personality
Disorder, depression and Generalized Anxiety Disorder. I’m a mess, but I am an
outspoken mess.
What being
on a wheelchair taught me – people will be mean. From ones telling me that I
should walk since I am not paralyzed, ones who would ask me about my sex life
as I was obligated to tell them every detail, to ones who will out loud say they
don’t like disabled people and would like me to stop. Stop being disabled.
Seriously. I heard that.
Hence the
name of this blog, as a tribute to all ableists who asked me my favorite
question: “but if you’re on a wheelchair then how are you gonna have sex?”.
Thank you. Honest thanks for inspiring me to starting talking more, not just talking back.
I hope this
posts, this blog, will at least open some people’s eyes, and this blog to be a
place where my fellow spoonies can feel safe.
Enjoy.
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