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.
***
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.