As I become more and more severely ill with ME, it’s getting more difficult to write. I can’t write that much anymore because it worsens my symptoms too much. Unfortunately, it means that I’m detaching myself from the world more and more, because my only connection with the world is my writing.
I’m thinking about this today, because I want to interact with my friends. I want to but I can’t grasp my thoughts, meaning I can’t say (write) anything analytical or smart. I want to tell people that I care about them, that I miss them, that I value them, but I’m so sad, so ill, so scared and so tired that I don’t know what to do with myself. So much of my social life is built on me saying smart things, and I have nothing insightful to say about anything today. It hit me so hard last night, that I’ve ended up in a situation where I think that I don’t have a right to talk about how hard my life is, and how sad and scared I am, if I don’t do it in an intellectual kind of political or philosophical frame. I’m trying to break free from this idea (that’s why I have this blog, I guess), but honestly, every attempt is making me so ashamed.
It’s not exactly helping that certain people are obviously terrified when I try to allow myself to be vulnerable. Not the people that I consider my friends, but some other people. Even though these are a minority, it affects me really hard. I caught myself daydreaming about being allowed to be sad and scared. It’s… I don’t know what. I’m sad and scared all the time, I’ve been terrified all of my life, and I still haven’t learned to allow myself to be sad and scared without feeling intense shame about it.
I want to write reflecting things about this. I want to write about how ever since I became ill, since it became more obvious to people that I’m disabled, it’s like people are blaming me like hell every time I’m open about how political decisions are making y life hell and how bad I feel because of that. But I don’t have the energy to follow my own thoughts. My head is a mess.
And I can’t even cry.
Here we go again
the memories are back. The memories of… it. The sense
the sense of not grasping, not understanding, but desperately wanting
the memories of falling
“Come on now try and understand
the way I feel under your command”
You probably didn’t know how much I was under your spell
you were the music
I should have been the lyrics
but my words were lost, evaporated, or maybe I never had them
You were everything that I didn’t dare wanting
I wanted you anyway
if the night belong to lovers, why did we never get one whole night together?
why didn’t I take it?
We had desire and hunger, but there was no disguise
I knew that my lust was love
but loving you meant facing my autistic self
the self without words
Quoting a song is silly
but my memories of you are music, rhythm, heartbeats, breathing
I had no words for what was happening then
I still don’t
“Take my hand as the sun descends
They can’t touch you now”
I had already taken the step out in the middle of nowhere
I was already falling
if we had held hands and fallen together
maybe we could also had landed together
I never found my words, but my demons got me
when the disease hit me
I thought it was a punishment for what I had wanted and almost asked for
for you, for authenticity, for being autistic
For a life without disguise
TW: Suicide, death, ableism, school
I’m thinking a lot about death these days. One moment I’m scared that my heart and the rest of my body is failing me, then suddenly I fee like this life can’t be ended fast enough and maybe I’ll have to end it myself.
I can’t end my life, because I have to save my kid. But I can’t do much for my kid, I’m trying but it’s not enough.
I feel like I’m a burden to my partner, because my partner needs to focus on finding a school that won’t harm my autistic kid.
Sorry, this isn’t much of a post. This is just a bunch of desperate thoughts, because I can’t take this hell for much longer and no matter how hard we try, it’s not enough. Being an autistic kid who learns easily but are harmed from an allistic culture means there are no accessible schools.
As usual, I really don’t want any advice. If you comment or email me telling me what to do I’ll block you. I’m not writing this because I think anybody can solve anything for me, I’m writing this because my thoughts are too heavy to stay in my head.
I want to write about forced intimacy. About the so-called intimacy that I might say yes to, because I don’t really have that much of a choice. About situations where the level of intimacy isn’t matched with the same level of trust. Is it really intimacy? Or is it just somebody in a position of power disrespecting boundaries?
I suddenly got a new person performing the disability services I’m granted. One day last week the manager texted me saying that the former person is ill, could she start the introduction with a new person tomorrow?
I wasn’t ready for a new person with such short notice. I was in a really bad shape and that makes me very vulnerable, a single little misstake can make my symptoms worse. But I said yes, because what would have happened if I said no? I would be a burden. A difficult person causing the manager problems. How would that affect the help I receive?
The new person, V, has had two days of introduction. Today she came on her own, even though I had no idea that her introduction was over. I don’t know her. I didn’t even had a phone number to her so I couldn’t text her, which meant I could hardly communicate at all with her since I have a hard time talking most mornings. I don’t want a stranger coming into my bedroom, but I have accepted that I need somebody to bring me breakfast in the morning. But when the manager just sends someone that has been here twice when I’ve been in a really bad condition, that means that I don’t even get a fair chance to get to know her. The intimacy is forced upon me. I didn’t get a chance to say that I’m not ready to have her in my bedroom yet.
Later this week, she’s supposed to assist me before and after my shower. She hasn’t even been here during a shower day yet. There are written instructions for her but how am I supposed to trust that she has understood them? That she will respect that she’s not allowed in my bedroom for 15 minutes after my shower, because I’m half naked putting tape on my hypermobile joints?
There’s something weird about disability services being organized in a way that requires me to comply with an intimacy level without being able to demand a matching level of trust. I guess it’s called ableism.