chronic illness whine

Having a chronic illness is really annoying in one respect that is hitting me right now: I can never just get a cold.

No. A cold is not just a cold for me.

It’s a cold plus an asthma flareup.

Or a cold plus a sinus infection.

Or a cold plus a chest infection.

Or a cold plus all of the above, with bilateral ear infections thrown in for funsies, like I have right now.

If you have no chronic illness, think of all the times you’ve caught a cold in the past year. Now imagine that because of complications related to your chronic illness, every cold took you between twice and four times as long to recover from.

Welcome to my life, and that’s why I wash my hands so damn much and bring lunch from home every day during cold/fu season.

Because when it fails, I feel like crap for weeks on end.  And because med side effects are a thing, I’m stuck in a holding pattern of bad enough I feel like crap, not quite bad enough to warrant taking the next level of treatment to it. I just love hanging out in the nowhere land of “too bad for sick plan, not bad enough for prednisone” when my symptoms are bad enough to suggest bacterial but not quite bad enough to try antibiotics for another few days unless things get worse.

Not in a good mood today – I hope I’ll be more like myself next time I post. About the only thing worse than feeling like crap is feeling like crap and being unable to do anything about it except wait and see. I hate waiting. Especially when I’m sick and what I’m waiting on is whether I get better on my own or have to take meds with side effects that make me more miserable so that I can force the issue and get better. Argh.

When I am lazy

Just because I feel like posting something light-hearted, I thought I’d make a post about what I do when I’m being lazy with my schoolwork. This is what laziness looks like in me (science and engineering types may relate – especially those from places with harsh winters):

• 9 pages of calculus to derive and equation I need from first principles because I don’t want to go to the library to get a copy of the course textbook because that means going outside when it’s -30C out.
• Using my scanner to photocopy the special report paper my assignments have to be completed on  because I don’t want to go back to campus to pick up the pad I forgot there.
• Two hours of calculus so I can avoid leaving the building to pick up my notebook to get an equation I need for an assignment
• One hour of Excel programming so I won’t have to solve an iterative problem by hand… which probably would’ve only taken 20 minutes or so to solve by hand but I refuse to be a human computer, damn it, that’s what computers are for.
• Two hours of programming to solve the general case of an assignment because I resent assignment that consist of forced practice… when just doing the assignment probably would’ve only taken a half hours.

And so on. In general “me being lazy” consists of me refusing to do things I find outrageously tedious (e.g. iterative problems by hand, forced practice of the same type of problem over and over), or avoiding going outside in cold weather. I can and will often go to great lengths to avoid doing those things.

What do you look like when you’re being lazy?

#HighFunctioningMeans

Intro: #HighFunctioningMeans – and its siblings, #LowFunctioningMeans and #FunctioningLabelsMean are trending on Twitter right now. For insight into what neurodiverse people really think of functioning labels, I suggest you check those tags out. I participated in the hashtag, and in my usual verbose way, I realized that I’d completely flood it if I posted all that’s in my brain, but I’m perseverating on it so I decided to turn it into a post. 

Content note: There are some offensive views I’ve written about in a first-person sense for reasons of satire. Content note for ableism and abuse. 

Perfect is the enemy of good enough

Like many autistic people I know, I’m prone to looking for the one right social solution.

But sometimes – many times, there is no perfect solution. Especially in tough situations, there’s often times when you can’t avoid pissing someone off – or hurting someone, for that matter. Unless you let yourself be hurt, and in some cases that’s not doable, either. Sometimes you’re stuck in a situation where you have no choice but to hurt someone and it’s up to you to find the least bad option. Good luck.

I’m in such a situation, in my meatspace life. And I can’t talk about it because it’s confidential. But, suffice to say, I’m pretty sure there is no “right solution” to this particular social problem, and that makes it difficult.

Social skills books and exercises and classes and what have you lie. They pretend as if all situations have a right answer and if you know the rules well enough, you can find it. But people aren’t like math. You cannot simply derive what you need from first principles.

You just muddle along as best you can and hope you don’t screw up anything irreparably.

And that’s where I’m at.

I am sad.

I had intended to write and post something yesterday. About yesterday. About Melissa and Isaac and Caitlin and Olivia, and Zheng and Faryaal and Zain and and and…

I can’t. My words aren’t working.

I am sad. Desperately sad.

Often I get angry. Anger is easy for me to write from. It clarifies, it makes my words come swift and hard and strong. Sadness weighs me down. I can’t write from sadness. Not well. Not in the way they deserve to be written for.

That is why I reblogged other posts. Because the names on this list weren’t just names. They were people. People who I wish so badly weren’t on a list I wish so badly didn’t have to exist. If they have to be on that terrible list, they deserve honor and remembrance and, yes, anger on their behalf. And I can’t do it. Not this year.

I have said in the past that I want a world where our murders are recognized as such. But that’s a lie. I don’t want a world where people condemn our murders. I want a world where the murders and abuses never happened.

I want a world where the Disability Day of Mourning doesn’t exist because it doesn’t have to. I want a world where Matthew McCabe plays happily with his little boy, where Isabelle Stapleton has a loving mother, where Alex Spourdalakis is sixteen this year, not forever fourteen.

And I didn’t post yesterday because that sentiment feels very selfish. It’s not about Ayahna or Vincent or Randall or Marian. It’s about me. And the Disability Day of Mourning isn’t about me. It’s about them.

But I am sad.

And I Am Telling You

I am unable to word an appropriate post for the Day of Mourning, but this one is worth reading and expresses my thoughts better than my sadness today is letting me.

Any death is one too many, and this past year there have been more than most.

the fool on the hill

I was going to try and be really highfalutin’ with this post. I was going to ask my roommate the English major about Lacanian theory and semiotics, and explain that. Then I’d make some allusion to the fact that we all perceive words differently, and it can sometimes mess up discourse on a fundamental level. Then I would tie it back to the fact that the word ‘disability’ is routinely interpreted as something hugely dire by the non-disabled, and explain that ‘disability’ is in fact a social construct. Then, to close, I’d make some quasi-profound point about how we could all do a bit better at understanding that we all have different perceptions.

But today is the Disability Day of Mourning, and I’m not going to do that.

I’m going to tell you that since the 2014 Disability Day of Mourning, at least 20 more autistic and neurodivergent…

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