I'm planning the next milestones, in terms of physical achievements. The next goal is going to PMD in January with Clémentine, and enjoying myself fully. Travel will be longer than what I've done for the past year, so that's what is stressing me out the most. If it goes well, the next step will be festivals. I'd love to either go to WGT with Clémentine or Maschinenfest with Math. I know I'll most likely never be able to enjoy festivals like an able-bodied person, since right now one concert is already a feat in itself. Standing still for more than an hour is very painful, still, and often I have to skip opening acts or leave early. PMD will already tests my limits quite a bit, actually. But I want to do it, and it'll be just like the usual, but bigger. If I have to go sit in a corner in the middle of a show, to let the pain rush over me, that's what I'll do. If I can't watch the show, I still get to hear it and I have to accept it's enough.
I'd love to figure out how starting to work again fits into all that. I miss working so much. Just doing something. Anything. I'd love to earn some money, of course. Money is tight right now, but I get what I need, I can manage with not much, and I don't get more than what feel I deserve (I'm so not done unpacking that). The primary reason I miss working is that I am deeply ashamed of not working. I feel like I can't rightfully justify my existence. I live a life of absolute luxury : I can do what I want of my time. But it feels so wrong. I feel like a fraud, that disability is too big a word for me. It most likely stems from the fact that my parents never supported or even acknowledged my illness, ever. I was told that it was all in my head by my mother, and when I mentioned any type of symptom, chronic pain, fatigue, she'd nod and say it was the same for her. Of course, everyone lives with tiredness and some kind of pain, so why am I the one to get special treatment. I can barely breathe typing this.
I've been thinking of what kind of job I could do. But I don't know how much I can do. I only started living again once I quit working (and after over a year of recovery). Pushing myself to work destroyed my health. I was in so much pain every day that I had to drink to make it go away. I was so tired we had to cancel our holiday trips more times than I can count because walking through an airport was not an option, when I couldn't even go down a flight of stairs. The last concert I went to before this year was 5 years ago. I had to sit, because standing was too difficult. I had to beg for a seat. I stopped giving all the energy I had to work, and I allowed myself to enjoy music again, to go out, to parties or just outside, and to have sex.
I still keep feeling fractured and incomplete, without work. It is a stupid standard I hold only myself to. People can work or not work, it is none of my business and I don't care. I firmly believe intellectually that we shouldn't define people through their economic value in a capitalist society. But I can't help feeling alienated and overcome with guilt. The alienation is also physical. I feel isolated from people, and it is quite natural when you consider I spent most of my life working in direct contact with the public.
My thoughts tend to go to freelance work first, trying to find new ideas. I did start two businesses successfully from the ground up before, so it makes sense. But wouldn't it be a smart idea to get myself back into the system at some point ? As an unemployed freelance, I am entitled to no benefits. I get dizzy when I think about retirement. And I know if I return to being self-employed, I could spiral into work addiction very fast again. I've been trying to think of places and jobs I could get hired for, a few days a week. But most jobs as a sales person would probably be way too physical, not to mention waitressing. It's a bit of a dead end for now. I'll keep looking. Typing all this was exhausting so it's just going to end a bit abruptly like that. If you read it, thank you.
Continuing in the path of self-discovery and understanding, I have come to realize very recently that music has just taken a very important place in my life because in addition to bringing me a lot of pleasure, it serves a practical purpose.
I am hyper-aware, hyper-anxious, unable to relax and for these reasons and more, I can't focus on many tasks without doing something else at the same time. When I used to work at the workshop on my own, I had to put some music on, or an episode of The Good Wife I'd seen already 20 times, to prevent my thoughts from spiraling into anxiety and even anger (since I'd remember always and only the negative stuff to berate myself about). Background noise keeps these thoughts at bay. My mind is still able to wander, but it feels reined, and in these moments I will often make plans for the future or come up with creative ideas.
Knitting used to serve that purpose when I was able to do it, and there's been a few months where I felt absolutely bereft and almost unable to function because knitting was taken from me. Watching movies became very difficult and frustrating, even having long discussions with people was becoming a hardship. I've attributed it to brain fog or diminished cognitive function due to my illness in the past, probably mistakenly, but it's hard for me not to zone out of a conversation (or a board game play) if I'm not doing something else at the same time.
I feel like I'm able to pay more attention to a single thing by dividing my attention between two things. Does it sound counter intuitive? It's like one thing happening is not enough. I get twitchy and sore on my chair at the restaurant, I have a very very hard time reading a book with no music on (I read a page and check my email, and I hate myself for doing so).
Does it sound like ADHD? Maybe, a little bit. I'm not qualified to make that diagnosis, a lot of the symptoms fit, some don't. It would be hilarious though, since my mother used that “diagnosis” to justify her abuse. Anyway, let's not go there and call it an overactive brain. That's been established without a doubt by all the people in the medical field I've seen.
All this train of thought came up when we decided to cut the music off for a little while with Math and I tried to think about how it felt (since I'm otherwise listening to music during probably every single of my waking hours but one, I'd say). And I realized : it feels bad. Not just because I miss it and I'm certainly addicted (you know, I'm really into it, like it's my current thing :-) ) but also, I start to focus on all the noise around. The street noises, the neighbours, the pipes, and it makes my anxiety spike up in no time. And I can't shut it down. If we're having a sustained conversation, or watching a really good series, I still hear the cars and the people downstairs in the hallway talking to the janitor. With an hyper-aware brain, it never stops. And the people around me told me they don't hear anything. It's exhausting not to be able to shut off the “extra information” (that's also why I need to sleep with a fan on, to make white noise, otherwise the street noise drives me insane).
I've been walking a lot for the past 6 months (with music in my ears, naturally), and even more so recently since I'm not allowed to work out anymore, and Math has joined in on a few occasions. I don't play music when he's with me (although I wear headphones to keep me warm!) and it feels odd to be music-less, and he's often commented on how distracted I seemed. So I suggested yesterday I try actually listening to music on a very low level with him as well (since I'm already wearing headphones anyway), to see if it would make a difference. And of course, it did. We'll have to see in the long run if it doesn't impede our communication or make him feel uncomfortable, but I felt more energetic, walked faster (usually I have to ask Math to walk slower), felt more in the moment, and well, felt less fragile (Math had a panic attack and I think I probably would have freaked out otherwise, since I was feeling myself rather terrible yesterday, but I didn't).
I wondered if I had always been like that and it dawned on me that I spent my childhood drawing. Literally, you could not peel that pencil away from me. I'd draw in class (while listening and taking condensed notes, already in primary school). None of my teachers said anything to me, because they realized quickly that I was paying a lot more attention that many of my little friends. And at home, I was drawing too, but then the TV was on. All the time. It drew my parents insane (but they didn't forbid or limit it). So, yeah. Not new, I guess?
That is also maybe why I stopped drawing all of a sudden when I was a teenager. Because drawing was as much of a tool as it was a creative endeavour, and I found another tool to focus on then: music. And I stopped creating then, for a little while, but that's another story.
