Inappropriate Friends are the Best Friends – Part 6

My cats knocked my depression meds into their water dish and I was completely unable to do anything about it, because it’s a heavy ceramic fountain. So not ONLY did they ruin half my monthly supply, they poisoned their water. Assholes. Insult to injury, it was the day after my friend Lizzie had come over and thoroughly cleaned the fountain out while she was helping me with cleaning the apartment (we love Lizzie a lot). She expressed dismay that she’d JUST cleaned the damn thing out, and I told her that it was okay, I’d strongarm J into helping me.

She replied in an email, “If you had strong arms, you wouldn’t have to ask J!”

And I laughed a lot.

She had replied in email instead of comment, because she wasn’t sure it was too far. It wasn’t. Gallows humor keeps me able to deal with this, and I realize that sometimes even my own jokes are ‘too far’ for some people – like recently when someone asked me how my new tattoo’s white ink was going to fade, and I told them I’d be dead before I had to worry about it.

Some day, someone will say something that goes too far. probably. Maybe. I dunno. I’m pretty fucking dark. It’s beyond gallows humor…guillotine humor? Firing squad humor? Saying it out loud a lot of times as a joke makes it easier to take it seriously. The concept of your own mortality is a bitter pill to swallow, so I need to wash it down with humor.

At least for as long as I’m able to swallow.

Pikachu used ABLEISM! It’s SUPER EFFECTIVE!

A conversation I’ve had a couple of times:

“Are you playing Pokemon Go?”

“No.”

“How you could you NOT!? It’s collecting cute things! That’s TOTALLY you.”

“Because it’s a WALKING game.”

“….Oh. Right.”

“Dick.”

I did eventually install it, and I’ve been able to play a little, because going slowly in a car still sorta works, but I am sad that there’s a huge social aspect to this game that I’m missing out on by virtue of mobility problems. I don’t hold that against anyone though; it just is what it is. Go catch them pokeymans!

Meat Shells are Terribly Inconvenient.

There’s a quote floating around on the internet, that I can’t find a source for, and it makes me very happy.

“You’re a ghost driving a meat-coated skeleton made from stardust, riding a rock, hurtling through space.

Fear nothing.”

I’m not sure about the fear nothing part; there’s plenty in that idea to fear. But it is a pretty accurate description of the human condition. And I take a weird comfort in this idea. It’s the same solace I take in describing ALS’ ultimate result as ‘fully aware, trapped in a meat shell’. The body and mind are completely separate things, and it’s just my stupid body that’s failing.

My friend Sam posted this thing from tumblr on her facebook today (and here I am, blogging on a social media platform about a post on a social media platform that was originally posted on another social media platform OH MY GOD I WIN AT META) and it made me really happy. Both in the content, and the internet’s reply (sometimes I really really love the internet community), and the nerdy joy that it brings me that I UNDERSTAND THEM. And it gave me an opportunity to explain my disease in a new way.

So the original post, by user MIckeyrowan was this:

having a flesh vessel is so annoying?????? like they have to be constantly watered, they have to be in specific temperature range to be comfortable, i’ve had a headache for like seven hours and nothing i do will get rid of it,
physical forms are so inconvenient??????????????

And the internet responded:

derinthemadscientist:
I knocked mine over yesterday and scraped off some of the outer barrier and it keeps sending me really annoying warning messages about it

vincentvangozer:
blood.dll has caused an access violation exception

asksecularwitch:
I still can’t figure off how to turn off the monthly compile time. It goes for like 7 days wrecks all the system and takes so much CPU time.

tharook:
I got the wrong model, too, and there’s no returns or exchange policy. I’m trying to make do as best I can with aftermarket modifications, but even that’s a real bind. And then I have to deal with all the purists who try to tell me I should be happy with the model I was given.

There’s many more, I’ll post them after this. So now, I have geeky new language to describe ALS: “My CPU has decayed signal integrity from the core processor to motor servos; this is a known issue and there’s currently no patch.”

So, that brought me a little bit of joy. And now I present you with some other awesome ones:

theriversdaughter:
Mine has a short in the warning and alert sensors, and keeps tripping the alarm system for absolutely no reason. It’s been taken to the mechanic many times, but the best they can do is recommend daily chemical baths for the wiring to keep it from arc-faulting constantly.

fabulousworkinprogress:
My uterus keeps trying to install this shitty bloatware that comes with certain dll processes and I keep refusing the update, then it goes through the whole defrag process deleting all those files.

living400lbs:
My histamine system is faulty and triggers for no reason. I keep turning it down but I have to keep reapplying the patches daily.

and probably my favorite:

noirandchocolate:
My unit will often refuse to turn off when I’m finished using it at night. I’ll perform all the shutdown routines listed in the manual and put it in its recharge station, but it won’t power down completely and just turn off! And it’s so annoying because the darn thing supposedly “requires” at least six or seven hours off to recharge every 24-hour cycle, so I’m left with a barely-functioning meat husk during the day when I need to use it to perform my work tasks and interface with humans. Such a buggy model, this one.

and the followup gospel truth:

mega-mine-cake-kink:
Don’t even get me started!! So a whole sub routine for morning will be buggy as hell for goddamn hours if the file known as caffeine is not loaded. however you need to constant reload the file or the system slows down again. And of course if you load it to often it floods the system and you have to go through the goddamn purge process. On the subject of loading though. Beware of those files with extensions .curry and .street-kebab accidentally load those and you will be running a purge routine every goddamn 10mins.

Inappropriate Friends are the Best Friends, Part 4

As I mentioned in the last video, I’ve developed a habit of cussing out my own body when it’s not responsive to my commands, which has vastly amused people. Here I am trying to get in to a car and my leg isn’t lifting quite high enough to clear the door, and I’m hissing “come onnnnnnnnnnn!!” Or pretty much every time I’m about to fall, I bark out “NO!” like…BAD DOG! NO FALLING! It’s like Jedi Mind tricking my hand into gaining the strength to turn the house key in the door by saying “doooo iiiiiiiiit”. It doesn’t work. But I swear it helps. Sort of.

J, ex-husband, power friend, and awesome dude came over last night to help me clean my kitchen a little. I assisted by staying out of his way, and cleaned up the foulness that my elderly cat had deposited NEXT to the litter box. J gracefully listened to me whining about how changing out pee pads and emptying the Litter Robot’s tray (SERIOUSLY THIS IS STILL THE BEST THING EVER, GUYS, GET A LITTER ROBOT) had me out of breath and sweating, gently reminding me that he TOTALLY could have done that for me, you know. He’s one of my best allies and I’m grateful we remained really good friends – I don’t get how someone can be in a relationship with someone else for ten years and then just never speak to them again because the romantic part didn’t work out. I’ve been close to him for a quarter of my life, we’ve been through some serious stuff, so yeah, I’m keeping him around. He’s important. Dude also gives me rides to work, so that’s a plus, and we provide each other with talk therapy all the time. I’m not exaggerating when I tell you that probably no one on this planet knows me better than he does.

He’s leaving from my place to go work out, and he’s burdened down with his gym bag, his street clothes, his keys, dude’s hands are completely full, and I exacerbate it by asking him to put the trash can outside the door for collection when he goes out cause now it’s full of litter and heavy. He complies without complaint, and rather than letting me get the door for him like a sane person, he struggles to open it with full hands AND step out of the way while opening it but there’s a stack of recycling in the way, and having a hell of a time. He hisses “OH COME ON” to himself to get the doorknob to turn.

“Careful,” I tell him, grinning, “you’re starting to sound like me.”

“I yell all the time,” he tells me dismissively as he walks outside, “only it’s usually at inanimate objects.” He pauses, and gets this really strange look on his face.

“…..What?”

He grins sheepishly and confesses, “I am a horrible person.”

“…And?”

“Well it occurred to me, you *could* say the same thing.”

We both bust up laughing. “Fuck you,” I tell him, and close the door.

He gets me.

Inappropriate Friends are the Best Friends, Part 3

Danielle: I think you should be cremated with all of your stickers. Random thought of the day

me: that’s a LOT of cremation material

Danielle: ok, maybe just some…you can designate your fav binders. all the halloween ones

me: burn my cat stickers, my Lisa Franks, and the halloween ones hehehee

Danielle: hehehee there ya go

me: though that’s the majority of them, I think

Danielle: I was thinking that, yes

me: maybe just sticker my corpse and call it good

Danielle: Oooo it’ll be a wake game

me: hehe see?

Danielle: that was bad

me: Pin the sticker on the Vashti!

Danielle: hehee not entirely ashamed hahahaa

me: Give everybody penny stickers and if they can get them on my eyelids, they win!

…and then, because we’re not TOTALLY horrible people, we discussed her excellent idea of maybe donating my stickers to local teachers.

Thank God for Happy Planets in My Orbit.

Chat Log from today.

Eric: you write to much
going to need you to cut that down to like 2 paragraphs
thx

me: TL:DR – GONNA KILL MYSELF SOMEDAY AND YOU CAN’T DO NOTHIN ABOUT IT

Eric: yeah add a tl;dr on that shit
process improving
😀
but do tell me before it happens

me: I will. fo sho

Eric: i need to know so i can come steal that zombie tramp poster before anyone else
you know how it goes

me: hahaha I will make sure you get it.

Eric: and your baking stuff then we’ll call it square for all my years of service

me: hmmmm baking stuff might be a hard sell
I can add you to the pool of people to divvy that shit up

Eric: i dont want the divy
i want it all
im more qualified than anyone else

me: ….besides Eryn who went to culinary school with me

Eric: with my deep german baking heritage

me: hehehe

Eric: do i hear bake off?

me: XD

Eric: ok ok
if i make you the most amazing black forest cake
you put my name in the hat twice
deal?
k deal
and now i take my leave
to go sit in a class with people who dont even take notes

me: ok bye

Eric: DEAL
poof

me: (you forget I don’t like chocolate cake)

Eric: no i dont
but you’d eat it because it was the most amazing of all cakes
then you’d be like, shit my als is gone
too amazing
too
amazing

me: hahahahh I <3 you And I really do. Eric’s a good kid. The little brother I never had, even though I have a little brother. He is my spark of mischief, I am his Jimmy the Cricket.

Calling Cards of AWESOME.

Speaking of cards!! You may remember a conversation I had with my dear friend Megan about playing the “I’m dying” card, and she decided to needed to make me actual cards with various demands.

GUESS WHAT.

SHE MADE ME THE CARDS.

I can play this card whenever I want!
I can play this card whenever I want!

She and her fantastic husband Colin actually made me the cards. They are a physical thing. They are sparkly embossed and amazing. They ALSO gave me the Jack Skellington and Oogie Boogie figurines you see (and I heart them SO HARD) and the black heart decoration which does not at ALL show up in this picture. But it is soft and awesome.

Megan is one of the most thoughtful people I know. She once made me a little box of lip cutouts that she’d kissed with lipstick on, for when I need smooches and she is not there to give them. I can’t tell you how amazing she is. Her husband Colin, who I’ve known just as long, is also amazing and full of love. He is the perfect partner in crime for her and I love them more than I can ever possibly tell you.

And THIS, THIS is how I survive with a smile. I am orbited by planets of awesome, and the pull of their gravity keeps me from collapsing in on myself.

I love these cards and I am looking forward to the looks on people’s faces when I actually use them. I love the people who made them. I love the people who gave suggestions for them. I love that I have such amazing people in my life. I love that my diagnosis has shown me exactly how loved I am, and how completely I am surrounded by the brightest and best people in the universe.

I love my life, ALS and all.

Inappropriate Friends Are the Best Friends, Part 2

We went out early so that we could have brunch before the clinic appointment; Danielle, Gecko, and I. We went to a favorite cafe in Portland, around 10:30 AM. While waiting for our order to be taken, Danielle looked around at the cafe’s other patrons.

“Wow, there’s a lot of retirees here. This is the life. Just…come on down here, and read the paper and have breakfast.” She looked over my shoulder, gesturing with her chin. “They brought crosswords. That’s adorable.”

I could easily come to love that lifestyle. Wake up later in the morning, meander down to a delicious breakfast, and enjoy a slow morning with a book. Trouble is, when I don’t have to worry about work, I won’t be able to ‘meander’ anywhere. I’ll stop working because it is impossible for me to operate a computer in order to do my job. That means I can’t feed myself either.

“When I’m retired,” she said wistfully.

I pictured Danielle and myself at the tables, me in a power chair, shooting daggers at her with my eyes while she pointedly ignored me in favor of her book. She’s threatened to do terrible things while I’m helpless. Like dress me in pink. I was going to tell her my inappropriate joke, so I started, “I’ll be disabled.”

She cut me off matter-of-factly. “You’ll be DEAD.”

…and then we disturbed all of the retirees with our howls of laughter.

Things I Say that I Apparently Only I Think Are Funny, Part One

“You are getting on what might actually be my last nerve.”

“I quite LITERALLY do not have time for this.”

“*insert thing I don’t wanna do* is not on my bucket list, thanks.”

“At least come a zombie apocalypse, I’ll be safe to be around. Even if I turn, what the fuck am I gonna do? Gimp after you? NEERRRRRRRRRRVES…”

I don’t care what you fuckers think. I AM HILARIOUS.