I like words just for the way they look or sound or the exact particular flavour of meaning they carry. I understand the appeal of echolalia, it’s like stimming, words are shiny and glitter and have a sound and flavour to them that can be almost addictive. Trust me to like words like snowclone, snu snu and snobolds. I understand that words are just words and I am not easily offended. Words have different meanings for different people and in a different context and I prefer focusing on the intent of the speaker rather than literal interpretation. I don’t mind being yelled at, I don’t mind the somewhat blunt tone of battleground chat and I tend to find stupid comments silly and possibly funny rather than offensive, as long as the speaker didn’t mean it in a mean way.
I’ve gone to great lengths to surround myself with people who understand that I have issues but also understand that I do not want special treatment. If I need a five minute break mid-raid to put my wrist back in, I will ask for it, but the amount of ‘brb’ moments that pop up in three hours, mine doesn’t exactly stand out. I’m no longer the type of person who will soldier on so as not to inconvenience anybody else, but I’m also not the type of person that will expect others to do things for me that I can do myself.
I plan, I prepare and I go about my day just like everybody else does and somewhere along the line without conscious awareness it dawns on me that I’ve found a place in the world where I fit in. Chris can carry on a conversation and without a pause pop my shoulder back in when he notices it pop out. I wake him up multiple times during the night and he’ll help put joints back and not even remember it in the morning. It’s just a different normal.
And so it hits me pretty hard when suddenly faced with people that do not share my world view and somehow feel that because I am not at work, spend most of my current time being sick and need help opening taps and tying my shoelaces that I should be pitied because I am less fortunate. I don’t do well with pity. It annoys and upsets me.
I used to get very anxious about playing wow. The first time Chris coaxed me into logging in a character, it took more than an hour of sitting there staring at the screen before I was willing to touch the mouse or keyboard. I was just so scared of messing up when other people were potentially watching. On Wednesday night I dislocated my wrist on the Twins in the coliseum in the last few seconds of the fight and as I was on auto run, died a senseless death by running into a bunch of light orbs. Raid leader went ‘note the damage the light orbs make if you’re dark before charging into them’ and I didn’t even try to begin to explain that that was pretty useless advice at the time.
I didn’t do it deliberately and I knew what was going to happen as I sat there watching her run thinking, can I respond quick enough to find an alternate way of moving her, but by then, it was too late already. But I didn’t feel the need for justification. I play my character and it’s not about having good excuses lined up for when I look like an idiot, it is what it is and I’m happy to accept it as such and so should and do other people.
Why then does a few off-hand comments from a stranger upset me so much? I wish I knew. I get that people often don’t get the issues I have and when they start to, there’s that moment of ‘omg, what would I do in your shoes?’ which tends to lead to panic and boat loads of unwanted sympathy. I don’t like it, but it’s usually easy to shrug off.
Chris comes home and I say “Why do you love me” and he says “What did the carer say?” and I answer “She implied that you had some pathological need to take care of someone to make you feel good about yourself and that’s why you married me”.
Chris rolls his eyes and sighs whilst I try to explain that it’s not that question that hit a nerve but the implication that there was nothing more to me than my health problems, as if it was the most important thing about me, as if it defined me. The thought really scared me.
I spend a lot of time being sick, I hit plenty of barriers every day and when I crawl, exhausted, into bed at night, I wonder if anything I did that day mattered. Would the world be just the same if I hadn’t been there? Would someone be happier or sadder if I wasn’t there? Does my life matter on some level? It’s been a very tough summer and doing much of nothing creates quite a few doubts underneath the surface and it takes an off-hand comment to hit a nerve for me to realize what really upset me.
I don’t care what a stranger may or may not think about me or my life, I don’t care about comments or assumptions that I don’t particularly care for, but mattering matters. And once I realized that the worry I had had nothing to do with being disabled and everything to do with being human, the comment didn’t really matter any more. And tomorrow is a new day with a new temp who will most likely make the same statements and ask the same questions and I will be nice and polite and I’m pretty sure, not upset. Lesson learned I hope.