My best advice to sick and disabled kids, as someone whose been sick to the point of disabilty since I was four, is to pick up a creative hobby. Learn to draw, take up knitting, learn the guitar if you're strong enough to hold one and take up ukulele if you're not. Do something that will stimulate your brain and give you the satisfaction of creation, as well as distraction.
My parents' idea of occupying my time thru appointments and infusions and hospitalizations and sick days was just piling me with books and video games. Which is fine! Great escapism, fun to do, saves you from boredom. But sometimes you don't need to escape, sometimes you need to create, and not knowing how or where to start fills you with a feeling of frustration and helplessness. Reading gave me a fantastic imagination and I created worlds in my head that I had no way of getting out to share or saving for posterity.
My parents had hobbies of their own. Mom's a fiber artist and dad's a musician, and I asked them repeatedly over my childhood to teach me what they were doing but they always waffled on it and never did. Hell I didn't even learn how to cook until I was eighteen. So I was left with books and video games and no sense of satisfaction in my ability to do anything.
I took up art in my mid twenties, mostly by watching YouTube tutorials or checking out how to draw books from the library. They say the best time to start is yesterday, but the second best time is to start is today. I don't create art every day. I have more pain and exhaustion days than I do creative days. But when I can create it feels empowering, and power is something I don't have as a disabled person.
And I'm not saying take up a creative hobby so you have something to sell to fall back financially when you're too sick to work (obvs if you want to you can, but that's not the point of this advice). Paint pictures just to hang up in your bedroom. Crochet clothes for your dog. Write songs with lyrics that only make sense to you. And if no one is willing to teach you these skills, seek out resources and basically teach yourself.
I don't know how to end this post, but I am begging every sick kid (and sick adults too, for that matter) to not just wait for your life to end, distracting yourself solely with passive hobbies like books and games that have been scripted out to have pre-determined endings decided for you. Find an outlet you can do to create, for your own sense of satisfaction if nothing else.
at some point it's just like. do they even fucking like the thing they're asking AI to make? "oh we'll just use AI for all the scripts" "we'll just use AI for art" "no worries AI can write this book" "oh, AI could easily design this"
like... it's so clear they've never stood in the middle of an art museum and felt like crying, looking at a piece that somehow cuts into your marrow even though the artist and you are separated by space and time. they've never looked at a poem - once, twice, three times - just because the words feel like a fired gun, something too-close, clanging behind your eyes. they've never gotten to the end of the movie and had to arrive, blinking, back into their body, laughing a little because they were holding their breath without realizing.
"oh AI can mimic style" "AI can mimic emotion" "AI can mimic you and your job is almost gone, kid."
... how do i explain to you - you can make AI that does a perfect job of imitating me. you could disseminate it through the entire world and make so much money, using my works and my ideas and my everything.
and i'd still keep writing.
i don't know there's a word for it. in high school, we become aware that the way we feel about our artform is a cliche - it's like breathing. over and over, artists all feel the same thing. "i write because i need to" and "my music is how i speak" and "i make art because it's either that or i stop existing." it is such a common experience, the violence and immediacy we mean behind it is like breathing to me - comes out like a useless understatement. it's a cliche because we all feel it, not because the experience isn't actually persistent. so many of us have this ... fluttering urgency behind our ribs.
i'm not doing it for the money. for a star on the ground in some city i've never visited. i am doing it because when i was seven i started taking notebooks with me on walks. i am doing it because in second grade i wrote a poem and stood up in front of my whole class to read it out while i shook with nerves. i am doing it because i spent high school scribbling all my feelings down. i am doing it for the 16 year old me and the 18 year old me and the today-me, how we can never put the pen down. you can take me down to a subatomic layer, eviscerate me - and never find the source of it; it is of me. when i was 19 i named this blog inkskinned because i was dramatic and lonely and it felt like the only thing that was actually permanently-true about me was that this is what is inside of me, that the words come up over everything, coat everything, bloom their little twilight arias into every nook and corner and alley
"we're gonna replace you". that is okay. you think that i am writing to fill a space. that someone said JOB OPENING: Writer Needed, and i wrote to answer. you think one raindrop replaces another, and i think they're both just falling. you think art has a place, that is simply arrives on walls when it is needed, that is only ever on demand, perfect, easily requested. you see "audience spending" and "marketability" and "multi-line merch opportunity"
and i see a kid drowning. i am writing to make her a boat. i am writing because what used to be a river raft has long become a fully-rigged ship. i am writing because you can fucking rip this out of my cold dead clammy hands and i will still come back as a ghost and i will still be penning poems about it.
it isn't even love. the word we use the most i think is "passion". devotion, obsession, necessity. my favorite little fact about the magic of artists - "abracadabra" means i create as i speak. we make because it sluices out of us. because we look down and our hands are somehow already busy. because it was the first thing we knew and it is our backbone and heartbreak and everything. because we have given up well-paying jobs and a "real life" and the approval of our parents. we create because - the cliche again. it's like breathing. we create because we must.
i made a digital vw zine, there's a bunch of stuff on here that hasn't been shared elsewhere! if you're looking for a barrage of vw being really clingy and all, look no further :]
Hiiii I'm here with a slightly different style and trying some perspective to bring you Gem's lighthouse because I adore what she's doing already this season