I don’t care who knows I have ALS.
Just putting that out there.
I’ve had more than one person, upon learning about my diagnosis, “Don’t worry, I won’t tell anyone.” …Why the fuck should I worry about you telling someone? Tell everyone, I don’t give a shit. It’s not a dirty secret, it’s nothing bad that I did. I’m not ashamed of this. ALS does not diminish me in any way, it just means there’s some shit I can’t do so easily anymore, and someday I won’t be able to do it at all. So what.
And in some cases, it’s easier for me if you DO know. It’s better that my coworkers know what the hell is going on, so that they don’t think I’m snubbing them when I’m invited along for the 3PM team walk for beverages and exercise. I adore being included in this kind of stuff, and I worry about being seen as aloof when I repeatedly decline. If they know that I have ALS, then they realize that no, going on a walk isn’t going to happen, but hey, invites after work for beer and hangouts is lovely (even though beer is gross and tastes like gasoline and rotten wheat). Knowing that I’ve got this stupid thing going on means that when planning team building events, mayyyyybe make sure there’s something for me to do while waiting for you guys when you’re ziplining. That’s all.
Nearly everyone I’ve told about this has behaved like I’ve entrusted them with a secret. It’s not a secret, it’s as much a part of me now as the color of my skin or my favorite flavor of ice cream or my height. For most everything, the fact that I have ALS doesn’t mean a goddamned thing. But it’s not going to make a difference to me if you’re aware of it. It’s a part of who I am, and some circumstances need to take it into consideration, but it’s only as big a deal as you choose to make it. Not everyone cares about my favorite kind of cake, but some people might. Not everyone needs to know my sexuality, but it’s a part of me and I’m not ashamed of it. I’m not going to apologize or make excuses for having ALS any more than I’m going to make excuses or apologize for having some of the music on my iPod that I do. (Screw you, guilty pleasure music is still pleasure. I like Michael Jackson as much as Tool. O-Zone gets as much play as Bastille. My-ya-HIIII!) I have tattoos, I have ALS. I chose the former, the latter chose me. But they’re still very much a part of me now and nothing I need to keep secret.
I guess they’re worried on my behalf that people will treat me differently. This is something of a concern, because I’ve already had people deciding for themselves what I am and am not capable of – another post for another time – but I’m more than happy to show people for myself what I can do. This shit is not going to break me, and y’all fuckers need to recognize that. I’m not afraid of people seeing me as suddenly handicapped, I’m afraid of people misinterpreting my physical limitations for disinterest. I’m afraid of not being able to speak freely and openly about what’s happening to me because people feel like this is something that should be buried. I feel like I should be able to ask to be dropped off at the door rather than walking a quarter mile across the very full parking lot without it becoming this huge THING. I want to be able to tell my coworkers WHY I have had a million instances of being late or leaving early from work. I’m not skiving off work, I promise, I’ve just got a bazillion medical appointments.
So, so many medical appointments.
It’s not a secret. I don’t care who knows. It’s nothing I did, nothing I can control, nothing I’m ashamed of, nothing I’m worried about people changing their perception of me. I WANT people to have a different perception of me. The perception of some girl who’s not gonna let this shit beat her. Take a seat, darlings, and watch me work. Feel free to talk amongst yourselves.
And when the new guy shows up late to the party, feel free to tell him what’s going on.