In addition to changes to my lifestyle, I’ve made changes to my vocabulary. I thought maybe you would like to know these words, too, because they’re verbal shortcuts, easy ways to explain something, so long as the person you’re dealing with knows these words, too. So! Some of these are specific to me, and I realize that people reading this might not understand. Then there are some that are REALLY useful in dealing with terminal diseases, and the people who have them. It includes reading other pages. That’s right, I just gave you homework. Deal with it. *sunglasses descend*
MY WORDZ, LET ME SHOW YOU IT:
This is how my friends and I refer to ALS. It got that name before I knew what it was, it was just a better phrase than “whatever the hell is wrong with me”. My main babe Danielle came up with it, as I was trying to figure out what to tell people when they asked why I was limping. “Just tell them you got attacked by Godzilla. In the legs.”
These are different than spoons (definition of that to come). There is a specific number of times I can get up, out of a chair, out of a car, off the floor. Once I’m upright, it’s fine, but the effort of getting up takes more out of me than a lot of other activities. It’s like…it takes more gas to stop and start a car at a stop light than to leave it idling. Same principle. Once I’m standing, it’s fine, but there are only so many times a day I can get my ass vertical.
General Vocabulary, reporting for duty, SIR!
If you only read one thing from this list, it needs to be this. This is how to behave when someone is having a hard time. This is how trauma works. Comfort in, dump out. THIS IS IMPORTANT. There is no better way to put this, and no better way to behave.
This is basically the idea that a terminally ill, or chronically ill, person has a very specific allotment of daily energy units. Mana, if you like (you nerd). You spend these points throughout your day, and when they’re gone, that’s it. Game over. You think “Going to work” is one unit. But no. Every little thing that you don’t even think about (getting out of bed, brushing your teeth, put your clothes on) takes one point. It’s good language to check in. “How are your spoons?” “I’m kinda running on a spoon deficit today, sorry, I can’t go.” “Are you gonna have enough spoons to do all that?”
Also? she totally stole a spoon from that cafe.
This is a relatively new one for me. I haven’t talked about it here before. This is the idea that sometimes, the absolute best thing you can do for someone, and usually the HARDEST thing to do, is hold space for someone. Just stand by, and be available if they need you. Don’t interfere or get involved if they don’t want you to. Just be on standby for when they do. It’s really hard to stand by and be non judgmental and simply offer support; but I want you to know that it’s the absolute best thing you can EVER do for anyone having a hard time. Just, say you’re there to help, and then back off. Hold space for me. And I’ll hold space for you. I can’t promise I’ll be perfect at it, I’m still learning. But I’ll do my level best.
There are certain to be words to come. There are always new things. New swear words, if nothing else.