On one minute friends.
—
Oh how I love I just literally killed the first mosquito of 2017. In February.
But. To the point.
I want to formally apologize for the lack of posts lately. Who would know dying would be so exhausting. I crashed from maniacal episode (I'm a freshly diagnosed, still unmedicated, bipolar person) to depression and I just kinda…stare at the ceiling and wish I could cry.
But while I was hopelessly turning in my bed tonight, I remembered something that might have been a good idea for a blog post. Or bad. You decide.
I remembered when I was 18 I guess, I was writing a different blog, kind of my thoughts on different subjects. We need to estimate here that 18 y/o me was an undiagnosed, traumatized idiot, with the key word here being idiot. I was in pain everyone was saying was a psychological thing after rape, that was also in a huge part ignored by medical professionals around me. I suppose I wanted attention? Literally I have no idea why I did what I did. It's one of those things I can't remember actually doing, but I know I did. And maybe it was the attention thing, or the fact I was highly psychotic back then and couldn't differentiate between facts and reality if I tried, but the fact remains, I was a total disaster.
You see, I cannot lie. If I was a mythical being, I would be a faerie. It's not to say I don't lie, cause of course I do, don't we all? but I suck at it and it's super uncomfortable for me, i can't keep track and I just hate it. I'm this person who'll come out to you and tell you about all traumas 5 min after meeting you (ask Ki, I literally did that to her and we remain best friend). And when I lie, I almost always come clean, and usually try to escape the consequences if I'm to be honest, cause I'm a coward too.
Anyway, I have no idea why I lied on the blog then, or rather colored the reality as some will say. I'm highly suspicious it was the attention seeking thing, but I just…have no…idea?
I wrote a post about my ex high school, the one I was expelled from (or rather kindly asked to leave if I don't attend therapy, which for me is the same thing cause you cannot just blackmail someone with “stop being mentally ill or lose education” ya know?). I lied in the post about how I came out to my peers and that it was the reason I was expelled with a huge BOOM. Which didn't happen. I was asked to change schools cause yes, they minded me being an outed gay person very much (how I was outed is a whole another story, I didn't do it myself either) but they mostly minded my self destructive habits and was “worrying about me corrupting my classmates” I think was the quote? I have no idea why they'd think so, I was suicidal but not making some suicide pacts with friends! That came later? Anyway, I was half happy to leave and half mad they made me, my mum was pissed, and so I was taken from school and moved to another nearer my city, without a dorm so I lived at home, and put into a loving care of a psychiatrist who then sexually abused me, but hey you cannot have everything.
And so when I posted the Lie Post as I'll call it now, I got two comments - one from someone who recalled their days at boarding school, and one, anonymous, from who said was my former classmate.
And I remember two lines. One was “you're living in some kind of illusion” - which was true then just as is now so I cannot really say anything…
And the other “the saddest thing is, we liked you”.
You may think, as I did back then, and even couple of months ago still, that it's kinda cruel. To say thing thing to who turned out to be a terminally ill person. But the thing is, it was my fault, and they had right to be angry I suppose.
And I kept wondering who wrote it. Was it a girl I hated cause she was better than me at literally any conceivable thing? Something I would now admire as a person who is not disabled and has strength to do stuff, and is amazing at them. But that's post-dying-epiphany me. Cause one thing I learned this rainy cold November day was that life is unpredictable as fuck, and holding grudges will get you nowhere. But I think to forgive everyone and decide to learn to appreciate everyone you have to have this major life changing event happen to you. And it's not to say I'm in any way better, cause I'm not. In any way. I just had a fucked up thing happen to me and I see world differently after it.
Was it the perfect girl’s best friend who I always thought was looking down at me and was weirdly condescending- but she wasn't. It was my low self esteem and a victim complex speaking. She was kind. I wasn't.
Was it a girl who was perfect at English and we competed at it which was totally unfair cause as a bilingual person I shouldn't compete with someone still learning? And she was good. I was introduced to English at 4 y/o and listened to it a lot before that. She was just learning at school, and we were the same level. In which way that was fair? I didn't put effort into my English - she did.
Was it a girl who was so ethereally beautiful I couldn't speak a word to her cause I'd stutter? Who I'm still a bit in love with just cause I was then?
Or her best friend who made me realize I was a lesbian, and skip the whole major crisis connected to it, cause she was so fearless in her love to girls, so open, so beautiful. I owe her so much, she made me stop being afraid.
Or was it a girl I was crushing so hard at my abuser was jealous of her and would beat me over her. I think I still love her somehow, that amazing she was.
And you know, my predicted lifespan is 40, and I'm 22 now, so I'm not going anywhere yet. But I want to, in some way, say goodbye to those girls. Thank them. Cause I have a fast paced life ahead me, full of trying to fit a whole life in couple of years. And I think it's time to say goodbye to the past.
And I doubt they'll read it, they'll find a way to this blog. But maybe they will.
So here you go.
Thank you B (what was your real name? We always called you that) for being someone I still can look up to. Thank you Z for laughing with me when I was sad and wanted to die - I'm not sure did you know? Or was it just that you're always so nice? Thank you M for being a fair rival, someone I admire and wish best. Thank you Be for allowing me to learn to love someone unconditionally from afar and showing me beauty. Thank you O for making me who I am now, for being unafraid and teaching me to be so as well. Thank you C for everything, every smile and small talk, oh gods how I loved you.
Thank you P for being the loveliest roommate and caring about me even after I left, you're an amazing person, you're gonna be famous one day, I know it. I hope to see it. Thank you E for being my best friend back then. You saved my life and I love you still, even though we lost touch.
And to the rest, thank you too. For being for me when I needed you and laughing at me when I was sad. For just being friends in a class, you know?
And you may think this post is weird, and excessive, and unnecessary cause who thinks about high school like that? But it's not why I write it, I don't even write it cause I'm ill.
The year I was at this school I was every weekend at home beaten, raped repeatedly and psychologically abused and tortured, and it's not a hyperbolic speech. And when I came back to school for a week days, it turned out my school psychologist I couldn't trust. But the girls were always there and had my back. Even though I was a terrible, terrible person. And this is about that, cause I'm making my peace with the past.
But it's not only that.
This post is about friendship. About people who are important in your life journey even if they're there only for 5 months, or 2, or a day. About kind people who make me want to fight my uneven fight still.
Maybe my point comes across, but if not, I'll make it clear.
When I found out I'm incurably ill, my world kinda shifted? And I'm in some weird change moment now. And I'm trying to learn to be kind and good. To be nice to everyone. I learn how to say thank you.
Learn with me.
Hey guys! I'm glad you stuck around.
I got a bit behind with posts cause my life went hectic lately.
I only have a short PSA before we get started
I have been told my family read this blog. And now it puts me in a peculiar situation where I am wondering about if what I'm saying is gonna anger someone. And that... that is not how I can be a good activist, when I keep wondering about hurting someone's feelings.
So, if you are reading my posts, and you're my family, and you have something to say: feel free. But in all honesty? I am not gonna care.
I had an unexpected death happen in my family last week. Which in itself is horrible. My mum is devastated, I am shocked, we're all just very very sad. I do not want to, or am allowed to, talk about it more, so just please believe me I am truly sad and mourning. But I also have things to say, and I realize I may seem cold or uncaring here - but that is not the case.
Because what the things happening recently also did, is silenced my narrative about death and dying.
Since I found out I'm ill and I have about 10 expected years of being abled enough to function actively as I do now, and about 20 to live in general, I became very loud and outspoken in the question of ableism narratives in how we treat dying people.
Because... I started to feel pretty alone. The only person I could tell about my fears and pain, and shock, about my time being so constricted and short, was my therapist. One short hour a week was not nearly enough, when I started to have trouble sleeping and felt so empty, so scared.
And what I want you to understand is I do not blame anyone here and I am sad about the dead person (I ask you to respect my mum’s privacy, as she asked me not to say anyone about what happened) but I also feel like I'm suffocating. Talking at home is not really an option - not only is my mum in mourning, so it would be unbelievably cruel of me to talk about my death to add to it all - but she is also in very active denial about what's happening. And everyone has coping methods, right? So I decided to accept hers.
Generally, my friends (and in general people I talked about it to) make it into two categories when I tell them about my prognosis:
One is pity. The “oh no you poor thing” kind. The “but I'm sure they'll come up with a way to treat you soon!” Kind. And I do understand it's hard for them, I do understand it's awkward and you don't really know what to say. I've been there and I am in no way perfect. But this is silencing me. The “it will be fine” thing is silencing.
The other is fake cheerful. The “it's a lot of time still!” one. And honestly, I like this one better. It's at least acknowledging it's actually happening.
Because I do not look for a perfect reaction here. I just look for someone to listen to me.
And I am scared. I am sad. I am so so angry! Why is it happening to me? What did I do? It's so not fair!
I wanted to have children. I can't, and with the disability I have I cannot even adopt if I don't have an abled partner. But I won't see my eventual kids grow up. I'll die when they're in their teens, and it'll traumatize them! There is not a good option here!
Please let me cry, please listen to me when I rant. I don't know what to say either, but I need you to try to understand.
My life kinda halted its course now. I'm not sure I want to do uni, what for exactly? I won't even use my degree. I'm not sure what I want to do with my time and I feel it running out.
Sometimes I wish I was dead already, or I want to commit suicide just to get it over with. Funny, no? I'm scared of death so much I wanna die.
And at the same time… I feel really empty. Like it's not actually happening. I'm pretty sure this is what shock looks like? And I am so very tired of it.
I'm actually starting to understand how serious my illness it, it hit me all at once when my parents (my dad is a cardiologist) started talking about possible heart surgeries for me. It's scary, and it's exhausting to be scared all the time.
This post is a plea.
Maybe there's someone in my position near you. Maybe it is you.
Listen. Listen to your dying friends and relatives about how they feel. Let them talk if they want to talk. Don't suffocate us in silence.
We are so very tired of being silenced.
I hope maybe I lit a light in someone, or in you, to help someone like me. Cause the truth is… we're all around you. Most of us just don't start talking anymore, we've been ignored so many times.
On the end of this post is an update: thank you all for prayers and thoughts for my gran, she is okay and surgery went well. I am so very grateful for your help.
I know most of people reading this blog are my friends, and so I wanted to thank you for being interested in what is in my head. For wanting to listen to me. For taking your time to actually think about me.
W., the meeting with you made me so endlessly happy and let me find optimism in me. Cause it you care about me, and cared all this time, and we didn't even talk for years, and we wasn't even close in high school, if you didn't forget me or think me as pathetic - maybe people are good. Maybe it was that I am surrounded by negativity, but there is light out there in people like you.
Usually after seeing someone I come home and cry, but after seeing you I was smiling. I need more people like you in my life and thank you for giving me hope.
***
A/N: to all
lovely girls who read my blog and found me on tinder: helloooo! Now you know
more than you bargained for about my sex life! I hope you still want to date me
cause damn, this is awkward.
***
I can’t
sleep lately, painsomnia being terrible cause I dislocated my knee (and arm and
wrist and some fingers…) and it’s BAD. Like level 9 bad.
But being
awake at 1am has good sides, like sudden strikes of productivity and creativity
that always hit me at night. So here I am, bringing you my middle of the night
thought. Tumblr would call it nightblogging I suppose? And blame Australians.
I was recently
driving with my uncle I didn’t see for 7 years. Part of my family, dad’s side,
is estranged, and he’s the part of that family, but situation being sudden, we
suddenly reunited. It turns out his wife, and my dad’s sister, works with blind
people. Now, let me just say that being a (hopefully) future interpreter, and
losing hearing myself, I know a lot about d/Deaf and Deaf culture – but I don’t
know hardly anything about blind. So sorry, and please call me out, if I say
something insensitive or offensive.
We started
talking about disability, and beside the fact apparently my uncle doesn’t
consider me a disabled person (hey, nice! Take my wheelchair and my pain too,
would you?) cause mobility issues doesn’t exist in his world, he turned out to
be extremely ableist. “Did you know? They can almost behave like NORMAL people”
level ableist. Yuck.
Being in
pain literally all the time lately, no matter the amount of painkillers, my
usual fierceness got a bit dulled, and instead of huge rant I just sat there
trying to keep my face straight and nodded. People like to take my trained
resting bitch face as an encouragement instead of sign of impeding killing
spree, so he kept talking. And he said a thing that resonated with me so much,
so awfully.
He told me
about a girl who, being almost completely blind, did two PhDs and some
additional studies while “abled people like us” (again, thanks for completely
ignoring the fact I have severe mobility issues and use wheelchair daily??) are
lazy fucks who wouldn’t do it.
And I just
broke. Let me tell you why.
Being
disabled, you suddenly, as we previously stated so many times, become public
property. People feel entitled to tell you what you should do, how you should be, how you should look, behave, BREATHE.
Let’s say
we have two typical girls, average size, white, all in all “normal”, but one of
them is on a wheelchair.
Abled girl
with unshaved legs is a revolutionary feminist. Disabled girl? Doesn’t take
care of herself, dirty, probably smells, disgusting, hit rock bottom.
Abled girl
rocking a messy look with no makeup? Cute. Disabled girl? See above.
Abled girl
dropping out of uni? Probably needed to go find a job, take care of family,
just wasn’t for her. Disabled? FAILURE. WON’T EVER ACHIEVE ANYTHING.
Of course
there are race, being fat, gender and sexuality adding additional layers here,
but in general you see what I mean?
Being
spoonies, we walk everyday having to prove our worth. We HAVE TO study, have to
be successful, be pretty, pampered, in full makeup and pretty clothes. We can’t
cut ourselves some slack. Cause we’re being constantly judged. We’re either too
much or not enough. Too visible – too invisible. Too loud, outspoken, or too
quiet. I’m being hated for being “too much” (advocate, colorful hair, LOUD,
open about my sexuality, my autism, my mental illnesses, yelling at ableists,
colorful wheelchair, you name it I have it) while simultaneously I hear I should
try harder, be more, come back to school, fight through debilitating pain,
PROVE MYSELF.
The issue
here is, for a healthy person that would be too much to stand already, right?
But add constant pain, fatigue, so many really scary health issues,
disabilities being doubled (mobility + hearing loss, blind AND mentally ill
etc.), constant struggle with lack of accessibility… I used to wonder why more
disabled people don’t go outside. Now I know. We’re, as my best friend nicely
put it, forced introverts. Cause society, let’s be honest, doesn’t like us.
I went to
my university yesterday to talk about my return after the leave I took. Let’s
ignore lack of support here, and total lack of accessibility (no disabled
toilet?? Really??). I was told school can consider my request for accessible classes
if they find me WORTHY ENOUGH. I have to prove my worth, prove I won’t drop
out, they won’t lose their money.
See a
problem here?
Being a
spoonie, we have to prove our worth all the time. Or we’re using the air and
shouldn’t exist at all. But what if I don’t want to be a famous spoonie? If I
don’t want to be a wheelchair bound surgeon or lawyer? What if I want to be,
say, a sex worker. I want to be a camgirl. Well, then, first, I’m a taboo (disabled
cam girl??? Unheard of!), I’m problematic, I’m too open about my sexuality
nobody wants to know about (but THEY ASK. See previous post.), and I am not
worthy enough. Same if I want to be something less shocking, and “less
glamorous” than a lawyer, like librarian, truck driver, or a barista (shoutout
to my lovely spoonies in these jobs, you rock!). I either have to convince
people I have a right to live, or I am not given this right.
And this is
what we desperately need to change. Cause there ARE wheelie camstars, just as
there are disabled prostitutes, like there are disabled librarians and truck
drivers, like there are wheelies working in grocery stores or being cashiers at
Tesco. And we’re all worthy. Hell, we could lift Thor’s hammer!
And we’re
glamorous. We’re glamorous when we can’t shave our legs because joint pain,
when we have face hair or boob hair, or when we’re trans or intersex, Black,
latinx (should I spell it with a capital letter? I’m sorry if it’s wrong!),
Asian, ANYTHING AT ALL. We’re all worthy, having a college degree or being high
school dropouts. Being independent or needing constant assistance. We’re all
awesome.
And ableists miss so much by not wanting to know us. And I feel sorry
for them. Cause the most lovely people I met in my life were spoonies. Not
abled, stuck up entitled assholes.
See, my
fierceness is back, cause tramadol is gold. To sum it up: we need societal
change, we need visibility projects and more education at schools and
workplaces. We need to make abled people see more, see further, take their head
from their asses.
But all in
all, we need to stay awesome, and unlearn the compulsive need to prove
ourselves. I am trying all the time. Cause maybe I am a failure, but I am an
A++ awesome failure, having best friends in the world and badass hair. And,
what’s most important – I have time, and I have nothing to prove to anyone,
cause I am my own person.
(note:
sorry for any mistakes, see: pain + tramadol)
Living your
life you for sure see relationships come and go, and for sure I’ve seen my part
of that. One thing, that was always the hardest for me, was letting it go.
I would
stay in abusive relationships, burnt out friendships, places I didn’t want to
be, just because I am oh so afraid of being on my own, and, let’s be honest, my
own person.
Being
disabled, independency is scary, cause you see so many things you just CAN’T do
on your own – so how are you gonna survive? But here’s what I learned. We’re
gonna talk friendships, cause my relationships were all too messy and way too
abusive to be a good example on that topic, and they’re a thing for a
completely separate post. Which will probably come soon, trust my exhibitionist
tendencies.
No matter
if you’re abled or not, staying in a friendship where something feels off is a
bad idea. No matter if it’s them not respecting your pronouns, being lowkey
racist or highkey homophobic, or if you just don’t click as you did before, you
should do your both a favor and leave. Being disabled, and I’m speaking both
physical disability and mental illness to just name few, you definitely shouldn’t
stay in a friendship that burnt out. It’s exhausting, trying to save something
beyond saving, and being low on spoons you want to avoid exhausting situations.
When I was
18, back in high school, my graduating year, I met a wonderful girl. If It ever
came to her reading this post I want her to know she was completely, absolutely
lovely, I loved her and I still do. We became best friends, and we would be inseparable.
We could laugh and cry together and I knew she would hold me did I fall. We
stayed this way three great years, along which I found my gender and sexuality
to be completely different from where I started. She got better mental illness
wise, I got worse physical health wise. She went to uni, I took a year off. She
met new friends, I found whole online community which became like my second
family. We started missing out on each other, not having time to meet, her
being too busy, me being too tired. I could feel she didn’t understand me now,
with my disability, with me wanting to only talk about how gay I was (you know
this feeling just after you come out, don’t you?), and I didn’t understand her
uni struggles at all.
We tried to
save it for almost a year, before we finally decided to let go on amicable
terms.
Do I miss
her? Like hell. Does she miss me? I am pretty sure she does. But are we better
off? Definitely.
Thanks to
us letting go I was free to meet new people. I met my two new wonderful best
friends who are my family. I got back in touch with my childhood friend. I am
lighter now. Happier.
Though at
2am a little bit drunk she’s the one I want to text.
My point
here is: being a spoonie, focus on your happiness and your strength. Don’t let
burn out friendship hold you back. Let yourself be happy on your own. You
deserve that and you don’t deserve to be exhausted trying to save friendship
cause world throws slogans about how second chance is important at you. Sure,
sometimes it is. But sometimes it’s not worth it.
Mourn them.
Cry. Be sad. Sleep too much. Eat comfort food. Cuddle with pets, cuddle with
family. Cry some more. Give yourself time. You’ll be so much happier.
And the
most important thing: don’t let people tell you mourning friendship is less
important than mourning a relationship. Your heart is still broken.
Trust
someone, who thought is not gonna make it if she breaks off a friendship. You’ll
be okay. You’ll feel so much better.
And there’s always someone more worth your
heart.