What to do, what?

Okay, so I’m a little lost in my own thoughts; I am not completely sure what I have said to people, and what I have merely pondered. So I write it down here both for my own reference and to stop me sliding back and denying this. If you think this is oversharing, I can only say welcome to 2017. It is quite esoteric and personal, so you can stop reading here if that turns you off.

It is becoming futile to try and do what I really love (fiction and non-fiction writing)*, and to develop at all artistically while also holding down my current job. The latter is completely beyond my ability now, I haven’t managed to hold it down properly for months, and I don’t have the energy to keep going. No-one should be in the position of being hopelessly ill-equipped to perform the basic tasks of a job and feel totally trapped by it. That is not what the opportunity to get work was supposed to achieve.

I was so fortunate, and I jumped at the chance to work full-time, knowing that it was unlikely I would be able to do work like that for very much longer. Well, it is now twenty months since I started a twenty-four month contract, and sure enough my capacity has decreased. That is not a complaint by the way, just a statement of fact. I am not as I was. I am sure you aren’t either, though I hope the difference is not so stark in your case.

As an example of how things have progressed, I can’t hear 80% of what people say to me because:

  1. there is either background noise (any noise now) they are speaking too quietly,
  2. they are too far away (more than two metres)
  3. turn their head away mid-sentence
  4. or all of the above.

So I am terrified of my work phone (an infuriating little headset) because it takes to much effort to listen, no blood flow is left to go to my memory!

Also, twenty months of predominant wheelchair use and a not-quite-healed fracture in the upper arm do not bode well for the course of a progressive neurological condition. Things get worser faster! Not that there is no hope of wheeling things back. Exercise and self-care just has to take precedence, for some time it is necessary to devote all available time and energy into it. Yes, that does not exactly fill me with excitement, and no, it isn’t as simple as trotting off to the gym a few times a week after work.

Heavy on my mind is the guilt that accompanies the realisation that there are plenty of people worse off than me. Wonderful people who haven’t had such a treasure-trove of opportunities as I have, and who have been stricken with such serious misfortune that I want to punch** those who claim that people just need to work harder.

I don’t want to feel guilty, and please don’t you feel guilty because of me. Let’s be collectively guilt-free, since none of us actually chose our lot. I didn’t choose to have Friedreich’s Ataxia, neither did you. But hopefully we do get to choose what we do with our time this side of the grave. An opportunity is something voluntary, something you can back out of. Otherwise it is a compulsion.

I am being purposefully non-specific about what my job actually is because it is not fair on my employer if I start detailing it. I care about the people I work for, and I believe in the institution. Anyway, those that know me already know what I do. The point is that I don’t believe in my own place within it. My purpose. This is a cry for understanding, because I am someone who relies very dearly on others for validation. It is distressing to think that I am letting people down. But I need to back out.

I need the freedom to do what I came out of this planet to do and write out the stories in my head. Twenty months of concepts and ideas need to be re-examined and developed (where they are actually good — most of them aren’t and I am not being modest), as well as a back-log of drafts for this website. Interviews with people, attempts at poetry. I have plans to transform this website and launch a patreon page which would allow people to support me by pledging a small amount of money (like $3) on an ongoing basis in return for which those patrons would get access to content etc. It is a way to make creative endeavours actually sustainable long term. I’ll write more about this later.

Full-time work in the public sector is not my dream, and it shouldn’t be a hell. Carefully, and honestly I want to make my real dream actually happen. I just need some time, space, and understanding.

*Despite what some people have assumed, I don’t want to write for the Listener magazine. Or any media outlet for that matter. Not that I think I am better than that, but because when I am at my worst I find solace in fiction/poetry. At my best I can write fiction/poetry. I interview people because I enjoy good conversation. Whether the product of my endeavors is worth examining, well, that is really up to you.

**Punch with words of course…

3 thoughts on “What to do, what?

  1. brionyjae

    Yes to all of this!! Everyone’s time is precious on this earth, there’s literally no point in sticking with things you hate, long term, where you don’t have any goals that you feel motivated to meet. A Patreon page sounds like an excellent idea! Good luck with the gym, ughhh I totally feel you on that one xD (p.s. why do people assume that writers want to work in journalism?? UM I’ve lost count of the amount of people who’ve said to me, after I’ve told them I like writing and am doing my Masters in Creative Writing, “Oh so you think you’ll go into Journalism once you’ve finished your degree?” …like it’s the only type of writing???? GRRRRR. hahaa.)

    Liked by 1 person

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