Friday Night Panic

(It’s Friday night. J is over, we’re playing Horizon Zero Dawn. It’s late. We’ve been playing for hours and my back is a little cramped from sitting weird on the bed. Things quickly went sideways.)

we need to move

Ok, Body, we’ll shift a bit.

no, like, we need to move right now. right now. move. need.

Move where?

the chair i don’t give a fuck need to move now it’s kinda hard to breathe

Ok, I’ve asked J to let us out. We’ll sit in the wheelchair for a little bit. He’s gotten up to go to the bathroom. Let’s take our time.

HEY WHY CAN’T WE BREATHE RIGHT NOW

We can, Brain, but it’s always a little hard to catch our breath when trying to scoot across the bed. It’s an awesome bed, holy crap so comfortable, but damn is it hard to move around in. We’re just short of breath from trying to haul ourselves to the edge. It’s ok.

it’s absolutely not ok

OK YAH SERIOUSLY? WE CAN’T GET AIR IN. LIKE AT ALL.

I can reach the breath stack exerciser. Let’s use that to get a proper breath and then we’ll move some more.

it’s not working can’t breathe

WHY IS IT NOT WORKING WHAT’S GOING ON WHY CAN’T WE BREATHE HOLY SHIT

Calm. We’re just tired, let’s get to the edge of the bed and sit up straight. Expand the lungs.

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

Ok, how about the AVAPS machine? It’ll help. It’s designed to breathe when we can’t.

IT WON’T POWER ON WHY WON’T IT POWER ON??? HOLY FUCK!! ARE WE GOING TO DIE RIGHT NOW?! WHY WON’T IT POWER ON? WE ARE DYING!!

No, just..

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

J IS GOING TO COME BACK AND FIND US DEAD ON THE FLOOR IF WE DON’T START BREATHING!! RIGHT NOW!!

Maybe we can call him for help.

not enough breath to yell can’t breathe can’t breathe can’t breathe

WE ARE GOING TO DIE RIGHT NOW

Oh god. We really can’t breathe. What do I do?

You Calm Down. You’re Not Dying.

Um…you’re new. Hello? You are?

Hello. I Am Your Higher Brain.

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

YOU KNOW WHAT IF WE DIE RIGHT NOW IT WOULD TOTALLY BE OKAY IF THIS IS WHAT IT’S GOING TO BE LIKE ALL THE TIME BECAUSE WE CAN’T BREATHE

I have a Higher Brain?

Sure. You Know How When You’re In A Crisis, You Get Really Pragmatic And Don’t Panic But Just Do What Needs Doing? That’s Me. I’m The Opposite of Lizard Brain, Your Primal Instincts.

sssssUP, hOW’SSSS iT gOING?

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

HEY WE SHOULD TOTALLY CALL 911 RIGHT NOW. TRY TO STAND UP, GET SOME AIR IN HERE?? WE ARE GOING TO DIE. LITERALLY DIE.

I’m standing but it isn’t helping!

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

Listen. Calm The Fuck Down. If You Can’t Breathe, You’ll Pass Out. That’s Not Dying. You’ll Have More Than Enough Time For An Ambulance To Arrive. This Is OK.

BUT EVEN IF THEY COME IN TIME THIS IS JUST GOING TO HAPPEN AGAIN AND AGAIN. MAYBE WE SHOULD DIE AND BE DONE WITH IT. THIS IS THE WORST THING THAT’S EVER HAPPENED.

J is here, let’s have him call an ambulance. I’m standing here gasping like a fish and I can’t tell him what’s wrong. Oh no, he’s ..kinda panicking.

Then Don’t You Think We Should Stop?

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

STOP WHAT? DYING?

Panicking. If We Calm Down, We Will Be Able To Breathe.

Wait, is that what’s going on? …Is that why we can’t breathe?

ALS Isn’t A Switch. It’s Gradual. You Don’t Suddenly Lose Use Of Your Hands, Why Would You Suddenly Stop Being Able To Breathe?

Oh. Ohhhhhhhhhhh. Shit. OK. Yeah. J even just asked us if that’s what this is. That’s exactly what’s happening. This is a panic attack. This is the worst panic attack I’ve ever had in my entire life, but it is just a panic attack.

can’t breathe can’t breathe can’t oh…ok..i think i remember how to. ok. gonna try to pull in breaths nice and slow. ok. i think we are ok.

NOT DYING! WOOOOOO!! HEY, OUR BAG JUST CAME UNDONE AND WE ARE SECONDHAND PEEING ALLLLLLLL OVER THE CARPET!

My Job Is Done. Later, Guys.

Cool, only now what do I do about calming J down and dealing with the pee going everywhere?

Not My Department.

HEY IT PROBABLY CAME UNSCREWED A BIT WHILE WE WERE SCOOCHING ACROSS THE BED, YEAH? THAT WAS LUCKY.

Wait, what?

yeah what, how is this helpful?

WE’RE NOT PANICKING ANYMORE. NOW WE’RE WORRIED ABOUT THIS. THAT WAS A USEFUL DISTRACTION. J’S WORRY AND THIS MINOR CRISIS HELPED PULL US OUT OF THE WORST PANIC ATTACK OF OUR LIVES. OH ANDI GUESS HIGHER BRAIN HELPED A BIT. BUT NOW WE CAN BREATHE. HOLY SHIT THAT WAS SCARY.

You make several fair points.

COURSE. THAT’S WHY I’M THE SMART ONE.

…Whatever You Say.

Body, Mind, Self

So as usual, it’s 3 AM and instead of sleep I am staring at the ceiling. It’s been kind of a rough day. I took a shower, which anymore is a Herculean task and wears me out pretty well. J came over and shaved my head for me, and the shower afterwards was both marvelous relief from all the little itchy bits and frustration at my newfound inability to scrub my skin properly. I am out of breath, tired, and not completely clean when I get out. I feel a little defeated, if I’m being honest. I’m still doing infusions, and so there is two weeks out of the month when I cannot take a shower. I scrub the best as I can with washcloth and baby wipes, and after the last infusion of the cycle is done I take a very long warm soak in the shower. It feels like a second skin sloughs off and it feels wonderful. Anymore though, my attempts to scrub are coming up short.

After J goes home, I’m sitting in bed and screwing around on the Internet as always and someone posts a meme on Facebook gets under my skin. It wasn’t directed at me personally, but it was something I am six shades of defensive about and it bothers me a lot. I left a sarcastic comment reply, closed my laptop, and declare that’s enough Internet for one day. As usual it takes me a very long time to fall asleep. As usual it’s because of unwanted conversation.

I feel a little queasy.

hey uh sorry about that i think it’s the new meds

Oh, hey, Body. How’s it going.

not so great today. i couldn’t get hands to work proper, so now i’m not actually as clean as i want to be, but i really don’t think there’s anything i can do about that? i mean i’m trying really hard?

Yeah, that sucks. It’s almost time to admit defeat,huh?

HEY LOSERS WHAT’S HAPPENING

What’s up, Brain. Kind of expected you earlier to be honest. Body and I were just talking and it’s probably time to start thinking about getting some help for real.

YEAH THAT SUCKS AND I DON’T WANT TO THINK ABOUT THAT.

Well, we’re going to have to. Eventually. And you know this.

WELL LIZ IS COMING OVER TUESDAY TO START TALKING ABOUT SHARE THE CARE NONSENSE. LET’S DEAL WITH THAT THEN.

We kind of need to think about that beforehand, though. And Liz can’t really help us come to terms with needing bathing assistance. She didn’t sign on for that. That’s something we have to do.

HEY REMEMBER THE SONGS WE USED TO SING IN SUNDAY SCHOOL?

… are you serious right now

For real though, Brain. I need you to focus for a second.

FAAAAAAAAAAAAATHEEEEEERRRRRRRR ABRAHAM! HAD MANY SONS!

Are you fucking kidding me right now. Brain.

MANY SONS HAD FAAAAAAAAAAAATHER ABRAHAM!

Dude. Get your shit together. This is serious. Body is not really able to help us as well as she used to. I’m not asking you to pick up the slack or anything, we all know that you can’t. You know Body is going to fail us completely, and you and I need a plan for when that happens.

i don’t want to let you down

I AM ONE OF THEM

I know that. It’s not your fault.

whose fault is it then

I really wish I knew. I’d kick their teeth in.

well we couldn’t really. not anymore

AND SO ARE YOU

Yeah I know that too . But we have an entire posse full of people willing to do it for us.

we are really lucky aren’t we. all things considered

HEY HEY HEY

YES, Brain, what.

REMEMBER IN SUNDAY SCHOOL? THE SONG WITH THE STOP AND GO SIGNS? AND HOW IT WOULD COMPLETELY MAKE OUR WEEK IF WE WERE THE ONES PICKED ON TO HOLD UP THE SIGNS DURING THE SONGS? WITH THE LYRICS ON THE BACK? “STOP!! AND LET ME TELL YOU”? REMEMBER HOW PROUD WE WERE WHEN SISTER MENG CALLED ON US TO LEAD THE SONGS?

….Yeah. What about it?

I MISS THAT. LIFE WAS SO MUCH SIMPLER.

i could do anything

Yeah. I miss that too.

DEEP! AND WIDE! DEEP! AND WIDE!

Yep. So much simpler. Go to sleep, asshole.