3rd of November 2019
disconnected. From everything that matters. I barely talk to friends, I am not
going to work, I have no creative projects going, I am not contributing or
making a difference. I am just stuck. Nothing happens and I am not able to do
anything. It feels like I am stuck in a waiting position, but it’s an endless
one this time. I am not waiting for anything. Because nothing will come along
and stop this. I am just here in this empty lonely place, where nothing makes
sense, nothing gives life meaning and I have no purpose. And I feel utterly
incapable. I am not able to do anything. Not go to work, not read a book, not
care about things.
I want a life that has meaning. I want to have purpose and make a difference. And right now I am cut off from those things. And I feel cut off from friends. That includes you.
I know you
are fighting for your very survival. I hope you are winning. I know you don’t have
energy to talk or meet up or anything. But I miss talking to you. I miss you
input on my situation, I miss hearing about your situation.
So many people around me have a lot right now. And I want to be supportive and a good friend. Something I think I fail at when everything is this hard for me. I need too much. Or at least I need more than anyone can reasonably give.
I feel disconnected. From communities and people. From what matters. The only people who really reach out and are there are my parents. They are so nice right now. And I should be grateful. But mostly I fear the second I turns. The moment they stop being nice and understanding. And I fear that moment is the moment they realise I haven’t changed my mind about medication. I think they are going to be so mad at me. And I a both sad and scared and so so angry at the idea that they get to be mad at me for choosing what is right for me.
As much as I hate it I have realised I need people in my life. Life was so much easier when I believed being alone was the only way I could possibly live. Now there are complications. Being alone is so much easier to plan for and make happen. I think it took me this long to realise because it took me this long to meet people I like being around. I need intelligent and stimulating conversations. I need to feel connected and needed. I need to feel cared about and understood. And for so many years I just couldn’t feel that way with the people I met. My parents often makes me feel the opposite of connected and understood. So spending this much time with them and almost only them is not good for me. It doesn’t fulfil the needs I have in human interactions, it deprives me of them. And it’s not because they don’t try. We are just so different. And if I try to express these needs, they tell me that is why others find a boyfriend. And at the moment I am out of ways to tell them I am aromantic and asexual and that those things aren’t a choice. Sometimes I feel like it would be easier to explain to them if I had been attracted to women. At least then they would have something tangible to try to relate to. Now it’s just me and me telling them I am not incomplete, that I am a whole person and not someone else’s half, and them not knowing what to do with the empty space next to me that in their mind should be occupied by a person.
For some reason I am thinking about my grandmother. In a few weeks it’ll be a year since she died. And I am still grieving. I read recently that grief is all the love we want to give but can’t. And I am so full of love for her. So full of love it hurts. And even now a year in I am still not even close to knowing how to live without her. But that might be a longer piece of writing, or maybe that is too private to share online. Some things are just mine. And I think my memories and love for her is one of them. But the grief is still here, and I think it’ll bleed into these letters, and that might be okay.
The lost letter. The one I wrote, but couldn’t edit, was about her and my grandfather. About visiting the empty house and all the things I thought I would feel and all the things I did feel. It was a good letter, but I don’t regret not sharing it with the internet. Pieces of it might find their way to other letters, but that one letter is not going to be shared. And that is a good decision. I am allowed to keep a few things to myself.
My mind is stuck on the medication problem. The psychiatrist I had agreed to call wasn’t open for new patients and I am being pressured to find another. But the idea of finding me a psychiatrist is first of all not mine, and second because most people around me right now wants me say yes to medication. And I want to never have the medication conversation again. Ever. Even the thought that I will have to have it again is making me furious. I don’t have the patience to have it again.
I believe the world is big enough to contain many solutions to problems. My problem shouldn’t be any different. And that my parents and every therapist and medical professional I meet only have medication to offer, isn’t the same as this is the only option.
Because you cannot medicate hope back into my life. You heal my soul by medication my brain. You cannot medicate purpose and meaning into me. These are not brain chemistry problems, these are… I keep thinking spiritual problems, but I am not sure I use the word spiritual right. I hope the point stands. Medication is not a solution to anything, it’s trying to fix a symptom and ignoring all the things that are really wrong. And as I wrote previously, I truly believe that the people offering me medication care more about me being quiet and complacent than… than anything meaningful. I don’t think I could write anything at the end of that sentence that wouldn’t hurt too much.
I have been trying to find an analogy to describe what I feel is going on. And this is the best I could do. If I went to the doctor with a broken leg and the doctor wouldn’t look at the leg or the doctor kept asking me for what treatment I needed, that would be wrong. It would be absolutely reasonable for me to expect the doctor to know what treatment is required and to be able to carry it out. But because I have an illness that isn’t like a broken leg no one knows what to do, no one will look at the problem, and everyone is blaming me for not knowing exactly what treatment I need, even the people who took long educations trying to learn about illnesses like mine. And instead of even looking at the bloody broken leg, everyone is telling me to just take some painkillers. And when I as what else they will do to help heal my leg they avoid the question or tell me nothing can be done or that we’ll look at that once I am no longer in pain. And I already know that after this many years of not getting treated I will likely limp and be in pain for the rest of my life. The lack of treatment have left me with a handicap. But I still want to make that handicap as small as possible, I still want treatment, I still want someone to acknowledge that something can be done and that just giving me pain medication isn’t going to fix the leg. The pain medication is only a way to make me shut up about the pain. And I will not shut up. I refuse to be compliant and helpful and quiet. I refuse to cooperate with people who do not see me as a person who has a life to live and things to do and…
I am just so angry. I am angry at everyone who has ever asked me about medication. I am angry at my parents and at the healthcare system that failed me. I am angry that I didn’t get diagnosed with autism till I was 30 years old. I am angry that I am the only one who is willing to even consider alternative solutions. I am angry that I feel so expendable to society and the world. I am angry that I must look so worthless to the world. I am angry that I know I am not alone in being failed by society and its systems. I am just so angry.
And that anger is part of my current problem. I keep staying in bed, doing nothing, trying desperately to find energy to do the smallest things. And the second I feel a tiny spark of energy I burn it up immediately. I have no sense of saving the energy I do find. I jump right to using it and then I collapse again, and have to wait days till my mind and body can find just another spark. And the anger does burn the energy quickly. I tear myself a part in this rage. And I always arrive back here. Because every spark of energy has me looking for solutions, and I am told there are no more solutions, except medication. I want to work on solutions. I want to throw all the energy I have (and all the energy I used to have an hope to get back soon) into getting better. And I don’t want a little better with compromises. I want to dig deep and find the place deep down where the pain is coming from. And then I want to tear it out by the root, leaving nothing of it inside me. I want to do the hard work. I am okay with that hurting. I am (almost) ready to just throw myself into that work. But I cannot do it alone and I cannot do it with my current skill set. But that doesn’t mean I don’t think it can be done. I just need some help with it, so I can find or build the right tools for it. And I need a lot of support and care, so I can get through the pain and remain grounded in the fact that there is good things waiting for me on the other side of this. And I am so tired of being alone in this. So tired of being the only one who believes in a way that allows me to live and be me and not have all this pain inside me. I am tired of looking for it on my own. I am tired of feeling like the people who were supposed to help me keep trying to force me to do something that isn’t right for me.
And that is all the writing I can do today. I would love to write something nice for you today A. But honestly… I am too tired and angry to find the words right now. And I hope that’s okay. I am sending you good thoughts.
Looking forward to hearing from you