Review: the WHY café
Read this today and uff, no, I wrote a book on similar topics and my book is simply better. Don’t wanna brag, but it’s true.
The idea, that once you have found your reason for existence, the thing that you want to do every waking minute of your life, that after that you will have enough money to survive, a job, and oportunities will come to you like it’s universe working for you… it’s fun untill you ask yourself “and what’s about the ill?”
Why does nobody ever thinks about the ill? The Disabled? Those, who don’t have the same room full of “you can do whatever you want”s to choose from?
Made me very angry. So, if I knew what makes me the most fulfilled and happy, and I was knocking at all doors and I was talking to all people about it, learning, creating, trying, working my ass off for this… but then got chronically ill and hat to reconsider everything and give up on bunch of dreams… that means I what, did not want it hard enough? If knowing what you are here for and working towards the fulfilment gets help for universe to make the road easier, does it mean I got punishment? What about people who are d*omg in wars and from diseases? The children even, literal children, why does it happen? Why do most passionate dancers loose legs and writers get brain injuries? I don’t believe in a Christian god who is “testing is”, nor I believe in punishment from “something bigger than we are”. I don’t think people deserved to get ME/CFS and become unable to get up, have a chat, read a book or even deal with smells/light/sounds. I don’t think I was ment to not being able to dance, jump and run, to not be able to wake up and feel rested (ever), to not be able to remember words or what I was doing just in this moment. It’s silly, I need to look for clues when I do things and then forget what I am doing. It’s silly untill it happens to you and you understand, any day your intellectual abilities can just leave you and there is nothing anyone can do.
This book is for health people who are in denial about the fact, that over 80% of Disabilities are not born with. And that at some point in a certain age we all become Disabled and need help and will have access needs. And everyone, especially since 2020, can get things like ME/CFS even if you were healthy before. And then no dream, no fulfilling idea, nothing will help and most certainly not the people around you who so desperately try to forget the existence of chronically ill and Disabled people and about them being just one accident or one unfortunate infection away from becoming one themselves.
Health people are just ✨different✨ in my opinion. If your main problem is not the ultra low amount of spoons, chronic pains, brain fog and not being able to do things most people don’t even think about while doing them.. yeah maybe you can gain smth from this book. But me, haha, I am like that, I just get angry and want to shake folx by their shoulders HONEY DENIAL IS A RIVER IN EGYPT!!
Anyways…
While working on a telegram Chanel for the clothes and other items I make I tried to count every item (excluding pinns, patches, sticker, postcards, posters) I have made since starting the project in 2019 and even having quite abbreviated in between years… 93 items is what u could count. But I don’t remember all of them and definitely don’t have all of them photographs either •_• so there is actually more. Probably over 100.
Internship in the Theater turned out to be quite an underwhelming technically and overwhelming morally type of disaster… I have the hope, that it will get better, once people start trusting me being on fellow human being, but for now they just alienate me most of the time. Only the acting folx are truly nice and don’t care for my looks and the mask, they treat me kindly. Once again, Disabled people behave more humanly than non-Disabled folx while the whole world pretends like Disbaled people need to be dehumanised.
Sadly I don’t read atm, but started to play Sims Medieval (Pirates and Nobles) and it’s quite fun except of a racist name for Roma people. Treating roma and sinti like they are mythical creatures out of fables, putting them together with “the knight, the wizard, the elves, the princess..” like it’s a school play.. really not cool. Don’t understand why they still didn’t change it.
I was learning DaVinci Resolve today but ended up working on the next YouTube Video with CapCut, because it’s hard for me to learn new Programms without someone sitting next to me and answering all the questions. I am still very proud of me, because this is the first Study With Me video and it’s really nice ❤️🩹✨
While writing my last (jeppie!) Theater science essay decided to film some sort of “Study with me” but then my phone got a full storage :( so now I have 1h of footage instead of 2 as planned. But that’s ok. It was still fun.
🤎YouTube: Elfs_Tears_Society🤎
I hope to find more time to read soon, but I am so busy with doing things and having anxiety T.T I finally came around to film a YouTube video about the books I read in the last 11 months, but editing it will be so annoying because I don’t have money for a program that would put proper subtitles in..
Tiny book review. Shadow And Bone (Leigh Bardugo).
Finished Shadow And Bone in one day. Ordered the rest of the trilogy + first Six Of Crows secondhand. Netflix defenetly spoiled me, but there was also a good thing about watching part of the story before reading it. I could imagine the characters more diverse than they were described in the book. I am a little confused about why there were almost no describtion about the way people looked. It would be such a cool thing to imagine the different cultural clothes, what the different ethnicities looked like ect.. I mean sure, I can imagine for myself how someone from the Shu Han place would look like (I personally think about the Tatar-Mongols because of their closeness to Zar Rus) but it would be great to see more details of their special things like acessories, ways to sit, gestures, foods, anything. In Shadow And Bone we know nothing about the Fjerdians Alina met except of all of them having beards xD and we know literally nothing about the third nation (there were Ravkans (Rus based), Fjerdians (Nordic folx), Shu Han (mongol based) and the other one which sounded German or Dutch but had no describtion whatsoever so I did not even remember their name)… that’s a shame. But I hope more will come in the next books. In addition to that it was a little confusing for me as someone who speaks Russian to see the choice of words for some things. And sure, they don’t SPEAK Russian, but it’s still strange to see an infinitive verb used as a subject, it just takes away something serious from the dialogue for me… but I guess it’s a me-thing, because folx who don’t speak Russian probably enjoyed every minutes of it (and I am very happy for them!)
I do admit, that the book inspired me to pick up the worldbuilding process after I am finished with my last theater science paper.
🐦⬛On chronic illness and existential dread (not edited)🪺
I hope this year I will do more things. Choose to do more things I want to do instead of being afraid. This year I might have the privilege of spending the small amount of energy I have towards things I wish I would have already experienced. But this fears, oh, this fears.. their claws hold me tightly. They whisper „it’s not the right thing, you only have so little, don’t give it away for the perfect or the most important thing“… and I end up not using the small amount of energy. Like a fool. Like a naive, hopeless fool.
I wish I could save energy in a way, that I can stay curled up for days be then have a big eventful trip or just a day where I don’t need to „look at the watch“ (the energy-meter, if you will). But every time I go to sleep, I wake up with a feeling of regret. Every time I go to sleep, I am afraid of the next day. And I long for it, desperately, because maybe, just maybe, it will be the day when I finally move the claws away and am allowed to live?
Scared to disappoint myself, scared of what I have already lost, of the time that already passed. And longing for a fresh day, a fresh start, a fresh chance, just one more chance, I will not fuck it up! And then I do. But I am so tired of myself… it’s not a choice I keep telling myself, because 99% isn’t a choice, but this 1% is so painful. To see my Trauma and fears guide me instead of my knowledge and my hope. Good thing, that hope is patient. But am I? I have to be.
I shall walk when I can, cook when I can and laugh when I can. I shall experience what’s there to experience, no matter how small it seems to be in comparison to others, to those, who don’t live my life. To those, who, (for now?) are healthy. Or can afford the Great Denial. I shall write, I shall paint, I shall sing, as long as it’s possible. I shall get up early when I can and go to sleep early, because my body needs it. I shall be kind to my body, because it’s suffering from the same illness I do. Because it feels, like we aren’t the same, like there is me and there is my body. And there is the tiny child who wants to play, and the most scared adult, who is afraid to move at all, because what if violence will return?
But it will not. I deserve to live what’s there. And next time maybe I will have more.
I deserve to experience the beautiful simple things, because they are what makes life worth living.
Review: L‘Étranger (Albert Camus)
Too bad I could not read it in French. I wish I could.
I really liked HOW it was written. The first half of the story is just cis men being cis men in a nutshell (ignoring, supporting each others in the violence they do, pretending like nothing happens, even helping each other while being like oh yeah he is a good guy you know). The other half is more philosophical. It hit differently also because I had an Ex who was pretty much like the main character: not interested in anything (except YouTube videos), not having opinions, not experiencing emotions very much (not expressing them is one thing but feeling bored by literally everything is different), not being able to have deep connections and be vulnerable with himself or others. On the other hand, the main character is wildly autistic coded for his inability to cope with physical stimuli (I feel that a lot) and remembering things others would not remember while reacting „inappropriately“ to stuff. So I don’t think I liked the story, but it’s on me. I liked how it is written though, Italien watching a film, so many details but it’s not too much. It’s like a strange diary of someone, who does not need people and actually doesn’t mind to die because people are too boring and everything is useles anyway. Something like that. But I would need to read some interpretations for sure, especially since I have bel reading in German.
Just mailed my new Newsletter (vol.2 jippie! What a time to be alive!) This time talking about ME/CFS, #stillcoviding, solidarity and anger because of the lack of it. I wish I could host my own magazine type of situation.. Maybe one day with a special person. I love writing, people seem to like reading my things as well or at least most of them. The only way how I can become self-sufficient in a financial way would be by becoming a "full time" educator and writer. (I say "full time", because in my condition the only full tim eactivity I take part in is taking care of my basic needs. Still now always succeeding..)
Other topic: I have ordered some secondhand books and plan to write some book reviews on things i read recently and really liked. There are not many, but i have not written a book review in a very very long time.
Normal blog of a regular snowflake🫧Chronically ill, Disabled writer🫧They/them🫧Artist🫧Finishing bsc. philosophy & Theater science🫧Published author🫧 speaks German, English, Russian
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