I have a very hard time expressing the things that go on in my mind when i’m feeling sick. there are battles and struggles and baggage that i cary with me everywhere i go that nobody will ever fully understand. I can’t escape my own illness no matter how hard me and my support team work to minimize the amount of work it takes to get up out of bed everyday and make my time here on the planet worth something. I’m always afraid of the trail i leave behind myself, and i worry about hurting people (emotionally) who get close to me. I’ve never been physically violent with anyone despite numerous attempts by people who’ve assaulted me and yet i sense a fear from my family that something could go horribly wrong. I don’t know why, other than the idea that they’ve been to information meetings by nurses in the area that may have influenced their decisions to keep me separated from the rest of the family.
It’s so hard letting people in, but i’ve been finding more and more people who seem to empathize with my struggles. I know i can’t do this on my own which is why i turn to the internet, hoping even just one person might resonate with what i have to say on any given topic. I don’t hold any disillusions that all my followers are all gonna like the same type of content, but they haven’t unfollowed yet, so maybe i’m doing something well enough to keep them around. I just don’t think we’ve decided collectively if we’re laughing with me or at me. at this point i think the world just needs to be able to laugh instead of all this fear of the next morning being the last day of peace. I’m weeping daily for the love of the current. If things could stay like this for a few more years I might just be able to deal with my personal issues at a point where i could be holding down a job and being passionate about my artistic pursuits at the same time. Dad says its all worthless if it makes no money, but I know its one of the only things i can do that actually brings me consistent enjoyment. I used to lie awake every night in fear that when i woke up my work would be a viral sensation and reporters would be nocking down my door inquiring on my success (or lack there of) and i wouldn’t know what to tell them. Its not really up to me how people react to what i have to express. Its either good or bad or not worth anything or somewhere in-between to most people. I’m okay with where i’m at right now. I used to get a lot more attention in my interactions online and these days I’ve weened myself off posting as often and people seem to be less enthusiastic about my tweets. I really want to be at a point where book and merch sales are enough for me to rent in the city and live comfortably while still getting help from a doctor and support staff, but again, I can’t influence how other people choose to spend their money and time. I’m just getting by on the skin of my teeth as it is currently, relying on the help from friends and family to survive, but I want so much more for my life. I’ve always been a dreamer, and the dream hasn’t changed much ever since I saw what could be possible with twitter and how relaxed the publication cycle is. I was so excited to be on a platform where i could get recognition from esteemed writers i looked up to and my peers who would occasionally show their support for what i had to say on the platform.
Lately i’ve been imagining disaster everywhere i go. A fear that someone out there is going to be fed up with all of it and care enough to want to put a stop to it. I don’t know what i would do in that situation, but at this point it hasnt come to that. I’ve been reassured many times that nothing of that sort would happen to me, but my brain still perceives the possibility of it happening on a regular basis. I still have so much i want to do and see, but at the current state I’m happy if i can get through the day. It’s been really hard to feel so lonely in such a big city. I don’t know what it is, maybe i’m just not acclimated to the pulse of the city but I feel like a sore thumb. I’m much more comfortable in bed talking to whoever will listen while they’re killing time in their day thats much busier than mine.
I’ve been keeping a journal with me lately that i draw and write in. its been helping to get back into writing with more than keystrokes. I’m reminded of the woman who wrote the code for the Lunar landing by hand and the stack of paper stood taller than she did. It’s amazing what we can accomplish when we have no choice but to do or do not. Somehow I feel like people have little pity for my situation. I feel a general sense of “You did this to yourself” type thinking when I’m not so sure i haven’t had it all my life and they’re just spectating specific moments of time and judging based off what little evidence they have.
This has been really helpful for me, even if there’s not much said.
thanks for reading