S-P/A Day

Unless you’re new to this blog, you know I’m an optimist. If you are new to this blog, welcome! Pull up a chair, have a look around. I hope you find something useful here. And oh, by the way, I’m an optimist. I can’t even tell you why that’s so, but I’ve always been. Even when things are absolutely shit, I still believe to the core of me in some way, somehow, things are going to be okay. Even if it’s a new definition of okay. I don’t think it really serves in purpose being pessimistic, because when you’re a pessimist and things go wrong, not only are things bad for you, but you’ve been miserable for a long time up to that point – because you’ve just been waiting for it turned to shit. “I told you so” is a cold comfort. Seeing it coming doesn’t necessarily make anything better. It makes you right, I guess, and if that makes you happy good on you. But the anticipation of misery just makes the lead-up miserable also. Besides, it really will be okay. I know it.

There are those of you out there who call yourself a realist. You’re not, really. You’re just a pessimist without imagination. If you are going to expect things to be bad, at least have some imagination on how you get there.

So, yeah, optimist. Even though the end of my path is set and dark, there’s still a lot of light here. More than I ever would’ve thought possible. I’ve waxed poetic elsewhere and I will again, and again, and again. Because it’s accurate. There is so much good in my life, more than ever thought I deserved, or possible, even. It’s here. I see it. It’sbright and glorious and why I continue to wake up every day.

But.

Sometimes.

Some days.

Some days it’s really fucking hard to see that light. Occasionally the darkness and the unfairness and the all-around bullshit and fuckery that is ALS creeps in the edges and obscures everything until it’s really hard to see anything good. Everything looks like a shit sammich and the world feels awful and hard. And when that happens, I take a spa day. Or rather, a S-P/A Day. A day to sit and think and allow myself to be sad. To dwell in self-pity and anger.

Because I mean, it’s really fucked up. I’m not such an optimist I can’t see how fucked my situation is. It sucks that this disease exists at all. It sucks that I have it. It sucks that I got it so young. I wasn’t even 40 years old yet. You’re not supposed to get this disease until your mid 60s. It sucks that it’s taking my hands, and my joys in life are all to do with using those hands to create. Create delicious things, create drawings, create these words that you’re reading right now. I’ll never make another wedding cake, or draw a pretty girl in a corset, or teach myself to knit, or pick back up calligraphy. No evenings whiled away on video games. No more dancing. I loved to dance. Eventually I won’t even have a voice with which to dictate these words. And alllllllll of that …sucks ass.

It sucks that I was diagnosed less than a year after I bought my house. My life was falling into place. I had a job I really loved, I was going back to school to further that career that I loved. I had signed up for driving lessons to easily get myself from my new house to the job that I loved. I had successfully dropped weight I didn’t want and was fitting in my cute clothes again. My plaid miniskirt was a wardrobe option again. I was wearing medium T-shirts and looking good in them. I was cooking healthy food for myself. I had my very own living room to dance in. I was dancing. I was mayyyyyyyyyyyyybe open for a new romantic possibility; my divorce was amicable and well in the rearview and there had been a few crushes. I was decorating my new home to be exactly the living space I had always wanted. I had a huge, gorgeous backyard just begging for a garden, and I had such plans for that garden.

It’s not. Fucking. Fair.

So yeah. Usually I can take it on the chin and keep smiling and find the good. Because there really is a lot of good. And it almost always outweighs the bad. But some days it doesn’t. It can’t. And on those days I sleep a lot, I take Ativan, I cry, and just generally wallow. I allow myself self-pity. I allow myself to get angry. And when the anger comes, I let it fill me and I feel it to the core and I rage. And I hate. And I keep crying. And then I sleep some more.

And then when it is over, when I’ve given it a whole day, I can put it aside again. I allow it one day of my life, and then the rage and sadness get shunted aside in favor of the day-to-day living that must happen. It gets overshadowed by the joy that still here. My anger serves its purpose and then it’s done. Until the next time. I try not to let mourning for who I could have been – and who I was becoming – overrule the happiness I could still grasp if only I allow myself to look for it. It’s not all doom and gloom, but sometimes it has to be. Just for a little while. So it can fill me, and pass through me, and keep me in touch with my own grief.

Every now and again it’s important to give those emotions their own time, so that I can put them away and get on with the day-to-day living that’s necessary, and to fully appreciate all of the fucking amazing things that are still very much a part of my life.

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.

Needing the Dark

Today started early. I had a 9:45 AM appointment in Portland, and if you don’t think that’s early clearly you are not familiar with my 3 AM standard bedtime these days. I tried going to sleep at a sane hour, but my overly active brain had other ideas. In fact, my 4 AM conversation with body and brain almost resulted in its own blog post; I just knew that if I got up to write it I wouldn’t get any sleep at all. And I need sleep. I like sleep. Even before all this nonsense, it was my favorite hobby. ALS just gave my lazy ass an air of legitimacy.

I have recently made a crucial step and actually have started asking my friends for help. I know, I know! I was just as impressed as you are with myself. It was not at all an easy thing, as you can well imagine – especially if you know me. But I have doctors appointments to get to, and J is amazing but cannot be my sole source of transportation – particularly when I own the van and it doesn’t actually need to be him driving it. So I had put out an all call on my friends list for someone to come drive, and my friend Matt stepped up for today. Matt is also the storyteller for my Wednesday games, and as mentioned before is an all around good guy and excellent person to have in your corner. As we were driving to my appointment this morning, talking about video games and commercials and marketing and the abyssmal real estate market, the van’s brake warning light came on. It had done before, and usually came on and went off seemingly randomly, and we had previously resolved the problem by simply topping up the brake fluid. It it started doing this again recently, and despite repeated mental notes to ourselves, we had just failed to get more fluid in it yet. I wasn’t terribly worried. It didn’t seem like that big a deal.

…You can probably see where this post entry is going, yes?

By the time we were done with my appointments, and filled the gas tank, and got home, I’d forgotten all about it. That afternoon was my biweekly therapy appointment, which J was available to drive me for. As we were driving the 20 some odd miles to my therapist, the warning light came on and stayed on. And then, halfway there as we stopped on the freeway for a traffic snarl, there was a God awful smell of burning rubber and when we looked behind us, a bit of smoke. We weren’t entirely sure it was my van? But the presence of the smell and the light made us resolved to put more fluid in the van as soon as humanly possible. For some stupid reason we had taken the brake fluid out of my van and brought it into my apartment, so simply pulling over and adding more fluid wasn’t an option at the moment. Traffic started moving again, then came to a crawl again, and as J put the brakes on, more smoke. Something was obviously not right in a big way.

Fun fact! I have a debilitating phobia of breaking down on the freeway. When I was really little, our car broke down at night on the freeway and I remember vividly my father moving around outside the car trying to figure out what was wrong, while traffic screamed by us in the dark and I just knew in my little kid brain that any second now some car was going to hit him and splatter him up all across our vcar. I shook in terror waiting for my father to die. He did not, of course, but ever since then, any time there is a slight possibility of something going wrong with the vehicle I am in, it creates an instant panic attack. That’s the problem with phobias. There’sno reasoning with them.

Jay was talking, making plans of dropping me off for my appointment and then going to some auto parts place to get more brake fluid and I would make an appointment the next day to take the van in for proper repairs. I didn’t really hear him over the blood pounding in my ears, and my brain was already busy trying to figure out what to do when I vomited any second now. And then we got off the freeway, and I felt safer for a split second until Jay told me that the brakes weren’t responding properly. I just needed to get the van safely somewhere, and then…

… And then, what exactly?

My van is not exactly easily interchangeable with another vehicle. It is a proper medical device. Ever since I got the fucking thing I have been paranoid about getting into an accident because it is not going to be simple and easy to replace it. And if something should happen while I am away from home, I am completely screwed. Stranded. If I were in a manual wheelchair I can get into normal car, but the SS Opportunity weighs 400 pounds without me in it and is a God damn behemoth in her own right. I can’t just get another vehicle. I can’t just call a taxi for a ride home, anymore.

That uneasy feeling turned into outright fear when we parked in the lot of my therapist and the smoke just kept coming. I couldn’t see anything on fire outright, but something was smoking in the rear passenger wheel well and I literally did not know what to do about it. I texted my little brother – because let’s face it – that’s what I always do when I have a car problem because what the fuck even are cars they are magical beasts whose language I do not speak. Not only does my little brother speak cars, he is a professional tow truck driver so even in the worst situation he can bail me out. And has, in fact – when Jay got sideswiped by a probable drunk driver on Christmas in 2017 and the driver took off, it was Justin who went out to get him and help him figure out the next steps. When my brake error light initially came on, it was Justin who told me what to do about it. So when he didn’t immediately respond, and some minutes passed and smoke was still rising from somewhere in my van’s guts, and I wasn’t sure what we would do if we started seeing flames, I called him. He had been taking a nap and listened very patiently while his sister panicked at him over the phone about cars and smoke and I don’t know what to do. He told me to hang tight and he was on his way because he is my hero.

He was some minutes away, and so I went ahead and went inside and had my session with my therapist which was now all about my current crisis. J stayed outside to wait for Justin, and would come interrupt the session when my little brother got there. I wasn’t sure what I was going to do. I wasn’t sure what I even could do. Even if he could tow it somewhere, what the fuck was I going to do in my wheelchair and 20 miles from home? Again. You can’t exactly call a taxi.

After my 45 minute session, we went outside to find my little brother arrived in his giant tow truck, lights flashing, working on my van. Because again, hero. J came over and explained what had gone down so far, which is that Justin had pried the tire off the side of my van and had a look inside and formulated some theories. Apparently the brake line was leaking somewhere, as the inside of the tire was coated with fluid, and the passenger side rear brake had had to do all the work by itself and so had heated up red-hot and started smoking and had finally in the 34° weather cooled down to an oxidized white. He was going to tow the van to Les Schwab, and drop off the keys for them to take a look at in the morning, as they were closed by now. He offered to load me up in the van and transport me in it as he transported the van, but that was of course in his own words “illegal as fuck”. And you know, dangerous.

So we had a plan for the van, but I was still effectively stranded in Lake Oswego. My local public transportation service Tri-Met has a wheelchair transport service, but it’s the sort of thing where you have to get a special ID to qualify for it, and you schedule your pickups in advance and allow for a two hour window. The Lyft app on my phone has a wheelchair accessibility feature I had discovered some time ago, but I had literally no idea how that even worked. It was apparently time to find out. I requested a wheelchair lift, and the app cheerfully told me my ride would arrive in 45 minutes. After a moment it updated to 15 minutes. My ride was going to be courtesy of a local ambulance company, please look out for a white medical transport vehicle, license plate blah blahb blah. And just over 15 minutes later, fuck me if a wheelchair transport van didn’t pull up. It had totally worked.

We finalize things with my little brother to drop off my van, and for me to expect a call from the mechanic in the morning with an estimate before any work would be done. The wheelchair transport vehicle was a fucking sweet ride, the driver was completely awesome, and I found out that wheelchair accessible Lyft requests get priority even over his company’s scheduled patients because they are fully aware anyone desperate enough to need a wheelchair ride without a plan beforehand is obviously going through hella circumstances. And so I got a ride quickly, and my ride ended up costing me 10. Fucking. Dollars.

TEN.

Not only that, but my driver was an hourly medical transport driver and so I didn’t even have to tip him. I asked if I could, and he refused.

SOOOOOOOOO in review, my peesashit van broke down today, after standard business hours, in a very dramatic way. And yet, I have an amazing brother who was able to rescue the van and provide me with the next steps, and then I was able to get safely home for a very little amount of money. And I learned that Lyft access is absolutely a viable transport option now. I am home safe and warm with useful information and a solid plan. I have another appointment tomorrow which I’m going to have to cancel, and when I contacted my friend who had offered to drive me for that appointment and told her I needed to cancel and why, she told me her brother is an actual mechanic and as is actually not very far for me. So even after I get the brakes repaired, I have a plan to contact him and get my van checked over thoroughly to make sure I am not going to have any more nasty surprises coming up. Tonight things completely went to shit, and then the universe conspired perfectly to make things as best and as smoothly as possible. Everything could have been so much worse. I could have been completely stranded in Lake Oswego waiting hours and hours in near freezing temperature for a wheelchair transport taxi service to find time to come get me. I have a AAA account so I would have gotten the car towed regardless, but I literally would not have known where to take it. And we could have been waiting for hours for them to have the time to show up also. Instead my brother was there in minutes. With a plan. And a free tow.

Repeating in my head tonight is my favorite quote from painter Bob Ross, who explained light and shadow theory in painting with a profound slice of life advice.

You need the dark, in order to show the light.

My life is as bright as the fucking sun, and it is only these moments of absolute panic and misery that prove it to me. I am fortunate beyond compare. Even when things are chaos around me, the universe conspires to take care of me in a perfect way because of the people I am fortunate enough to be surrounded by. In my most dire circumstances, I am never alone and never without hope.

I see the light, because of the dark.

Tainted

J likes rabbits. A very specific rabbit aesthetic, mind you. Get those Hallmark Easter bunnies out of here. Victorian rabbit dolls, like The Velveteen Rabbit, Albrecht Dürer’s Hare wood cut. When I see these kinds of rabbits, I think of him. If it’s something online, I share it with him through Facebook or text message. When I see these kinds of rabbits, I think of him and smile.

My brother Gecko likes birds. When I see something funny related to birds, I think of him. I forward bird jokes, and bird memes. When I see something funny about birds, I think of Gecko. Birds make me happy, because they make him happy.

Danielle liked manatees. I mean – I imagine she still does. She likes them because they were chubby and round and adorable. When I see something about manatees, I think about Danielle. I can’t share those things with her though; she’s no longer in my life. When I see things I know she would enjoy, I am reminded of her absence, and it hurts a little even though I like that thing. I enjoy manatees a little more than I might have otherwise, because they made her happy and I loved seeing her happy. But now they also make me a little sad because they remind me of her, and she’s no longer around and seeing manatees makes me miss her.

Sometimes I wonder what associations people have with me, and what sort of currently happy things will become bittersweet once I’m dead. Marshmallow Peeps, I’m pretty sure. Stickers and things with googly eyes maybe. Mister Rogers. Probably all of the things that people currently forward to me on Facebook and email, silly little jokes and references that make them think of me and smile; and knowing I would enjoy them also, send them along.

Sometimes I think about the time that will come, when there will be that thing that reminds someone of me, and I won’t be here to forward that thing to. Some cool fact, or happy little thing that someone will want to share with me, but they can’t. Because I will be dead. When some currently goofy thing becomes bittersweet.

What happy things I am going to taint with my absence?

It’s a pretty fucked up legacy, ruining something quintessentially silly. To be able to fuck up stickers for somebody. Stickers, for fuck’s sake. Happy little adhesive pictures. Someday, someone is going to be at a craft store minding their own business, and their eyes will wander to a happy display of delightful little sticky images, and they’re going to get really sad. Because they know how much I love them. Loved. It’s a completely ridiculous thought. An adhesive cartoon octopus is going to have the power to make someone cry.

We don’t truly possess the power to control how we are remembered. We can only try to steer the shape that our selves create in someone’s memory. A vague outline, to be filled in with the colors of experiences and emotions and perceptions beyond our control. I hope to be remembered first and foremost as kind. Death positive. My almost unhealthy obsession for cats, Mr. Rogers, stickers, googly eyes, nature documentaries, Halloween, spiders, cartoons, marshmallow Peeps, swearing, Bob Ross, Skyrim, Pokemon Go, etc etc etc etc notwithstanding, I really hope kindness and death positivity are the first things people think of when they think of me. I’m okay with those two things being a little bittersweet. I’m comfortable with someone coming across an article about green burials and thinking how much I would’ve approved and appreciated it and getting a little bit sad that they can’t hit that forward button.

Those other things, though, are all really happy things and I hope my death doesn’t ruin them too much. At least, not for very long. Marshmallow peeps have no business being maudlin. Sometimes I almost regret liking shit that is so silly, so fervently, because the thought of an adorable cartoon bat making someone tear up a little is really fucking depressing. It instead would make me very happy to think that someday one of my friends is going to slap a sticker on their laptop and think fondly of me without sadness coming in and fucking it up. Because stickers are awesome.

Bonus points for googly eyes.

Catching My Breath

Jeez, peeps, it’s been a month since I’ve posted. Good thing this blog isn’t monetized or anything. A kind commenter left me a little prod about being so quiet, and I realized I should get off my ass and say something. Or…get ON my ass, since writing involves that position. It’s been awhile that I’ve been in a place to be able to pace and dictate or whatever.

I digress.

The first couple weeks of October, I don’t even have an excuse for not posting anything except perhaps laziness. Well, obviously laziness. No ‘perhaps’ about it. The last two weeks were kind of rough if I’m being honest. Politics caused me a lot of sleepless nights, and I wish I had it in me not to care about any of it, but I don’t. I often say the one silver lining to this disease is that I get to check out early, whereas the rest of you people have to stay and deal with this. I won’t be alive to see California slide into the ocean, or Handmaid’s Tale cease being fiction, or Auschwitz’s rebirth in my own goddamned country. There is a small grace in that. It still doesn’t prevent me having sleepless nights just absolutely freaking out over everything I cannot change and crying a lot. I wish the only thing I had to worry about was my actual disease.

The main thing going on in the last couple of weeks has been transportation problems, and breathing problems. I had an appointment to get my new AVAPS sleep machine, which I was very nervous about because it’s a whole new goddamned concession to this bitch of a disease, and I’d asked J to go along with me. Unfortunately, when we got there I was not able to get out of the fucking van because the automated door mechanism decided not to work. At all. We were used to it being a flaky bitch and sometimes not latching closed properly, but this was new. The door would not open all the way even with J pulling it open manually, so the ramp could not extend. And so I sat in the parking lot missing my fucking appointment while Jay feverishly tried to figure out how to free me. The door mechanism has been kind of flaky pretty much since I got it, and she’s been in for repairs twice already. J managed to get the door to open all the way, but he missed work the whole day instead of just a couple of hours while we took her in for an emergency appointment. The mechanics there were able to temporarily Band-Aid the problem.

By pretty much breaking my door.

Their fix to my door not automatically opening was to simply cut the cable that opened it and turn it into a manual door. Which is not, of course, a fucking fix. It was a preventative measure to keep the cable from snapping of its own accord and shearing apart the motor. We got a proper appointment later that afternoon to see what could actually be done, and after having my van for over an hour they explained that the entire mechanism would need to be replaced. Oh and now also the cable. Which, after the last time the van was in for service, we already knew replacing the assembly was going to be the next step which is why I had previously asked them to replace the entire assembly in the first place, and they never called me back. A month ago. So yes please can we actually REPAIR THE FUCKING VEHICLE.

This was all after getting pissed off that the mechanic would only talk to J and ignore me – because I’m just stupid dumb woman who doesn’t know anything about vans LOL. J very politely asserted that it was only MY name on the paperwork and registration and I would be the one paying for the repairs, so really he should be addressing me, not him (J is a champ). Thankfully, the mechanic did speak directly to me after that. But seriously. Dude wasn’t even old, he really ought to know better. They always do that; they will look at the paperwork read my name, and then turned to Jason and address him as Mr. Ross (THAT IS NOT HIS NAME EVEN) and explain what needs doing.

BITCH I AM SITTING RIGHT HERE AND WILL BE PAYING FOR THIS HI HELLO HOW ARE YOU. FUCKER.

Moral of the story is that we agreed the door assembly and cable need replacing. I kind of had to insist that we do that – the mechanic was seemingly trying to talk me out of it like, the door is working? (HI NO IT IS NOT BECAUSE IT IS A MECHANICAL DOOR THAT IS NOT FUNCTIONAL AT THIS TIME) The repairs will be expensive? (I HAVE A FUCKING WARRANTY) We got our van back, with the door still needing to be manually opened and closed before the rant will work, and the mechanic sets to ordering the parts that were needed and getting warranty authorization for repairs.

…A week later he calls to inform me that the warranty is declined for the repairs, because my contract does not cover those parts. He thought it sounded fishy and asked to see my actual contract. I have agreed the hell it doesn’t cover the freaking door, I paid $2000 for that fucking warranty it had better, and agreed to send him a copy. Turns out my fucking contract does not cover anything but the ramp itself, and the drive train. Literally nothing else. I paid $2k for them to not fix anything but a catastrophic failure THANK YOU ARIZONA MOBILITY FOR YOUR USELESS GODDAMNED SERVICE CONTRACT. So I am on the hook for $1000 repair. I have an appointment to go ahead with the repair on Friday, and then yesterday the ramp itself decided it doesn’t want to work either and refused to work for a moment. And then did work. Much like the door itself would sometimes decide to close and sometimes not. So I probably get to look forward to getting that repaired soon as well. Theoretically at least that will be covered. IN THEORY.

After missing the breathing appointment, I came to find out that the respiratory folks would actually have been able to come to my apartment in the first place to set up the machine. THIS IS USEFUL INFORMATION I WOULD HAVE LIKED TO HAVE. YOU KNOW, BEFORE. So we set up an appointment for them to come to me, and last Tuesday they delivered my new machine. It is, as promised, the most powerful noninvasive ventilator you can get. It costs $6400. If I can prove compliance – by which I have to use this machine at least four hours a day for 21 days out of 30 – then my insurance will pay for it outright. Otherwise I’m going to have to rent this thing for $700 a fucking months Covered by insurance, sure, but my co-pay is about to reset in January and I will be goddamned if I am paying for this fucking machine on top of everything else. I’ll save my precious out of pocket money for the $17,000 a month infusion meds that aren’t helping. I guess. So I just need to prove to Providence I am going to use it when I sleep. Pinky promise.

That’s turning out to be much easier said than done.

This machine is indeed much more powerful than my old CPAP was. Too powerful. It’s kind of like breathing from a turbine engine. It has a ramp function, where it will slowly turn the air up, but even that is not exactly comfortable. By which I mean it is genuinely hard to breathe with that machine on. I can’t take a little bit of air, it’s like drinking from a fire hose. If I try to breathe shallow to prevent the machine inflating my lungs like balloons, it freaks out and tries even harder. Eventually I have to pull in a huge lungful of air, which the machine helpfully cuts off the airflow after a second and I have to breathe through my mouth to catch my breath entirely. I have fallen into a routine of putting the mask over my face and then just checking out the Internet or watching TV or something for an hour or so before bed to try to get used to it before I am actually attempting to sleep. Like, distract myself and trick my body into being cool with my new overlord breathing on my behalf. It’s not really working. The only way I’ve really been able to sleep with it is if I medicate myself either with Ativan or Ambien first. Even then, I wake up fairly often. I find myself constantly checking the machine to see if I’ve hit four hours of use yet so I can pull the mask off and sleep comfortably.

This machine has taught me what my actual limit for life is.

As I lie in bed struggling to breathe, I know that when this becomes my existence, and not just an artificial effect produced by a machine, I am going to be done. I cannot live that way. It is abjectly miserable, and it is impossible to do anything else when you are struggling so hard just to get air into your body. That is not going to be a life worth living. When the machine is doing my breathing for me, and there is nothing in my brain except an animalistic fight for control over the oxygen coming in and out of my lungs, that will be the time to say goodbye. Because that is not a life.

For now though, I have the ability to pull the mask off. I counts down the time until four hours has passed, when I can pull the mask off and sleep properly. For now life is still great. I have ideas and plans. Including a very important plan to call the respiratory specialists and see if there is some adjustment that can be made to make me a little less abjectly miserable when I’m trying to sleep. To make sleep possible at all without taking potentially addictive medications. Friday I will take the van in and try to get it limping along for a little while. I literally just needed to last a couple of years. Sunday, I get to do something really really awesome I am super excited about. I have things to do. People to see. Life to live.

One breath at a time.










Hilarious

While in the company of a good friend, we talked about serious and silly things as I usually do, and found myself devolving into a rant against billionaires. Hoarding that much money should be illegal. No one should ever have a billion dollars in today’s economy, it’s unconscionable. How the hell do you have enough money to literally end world hunger and then just…not?

After awhile, my friend sighed angrily. “It just…makes me sick,” she fumed.

“It’s pretty bad when you’re talking to a terminally ill person and my disease isn’t the most depressing thing,” I agreed.

And then we both laughed and felt better, and THAT is why gallows humor rocks.










My First Death Positivity Experience

When I was very young, barely old enough to even know what death was, I saw a show on PBS about the (still very new to the public at the time) AIDS epidemic. I don’t remember anything else about the show, but there was one segment that stuck with me for the rest of my life.

A man, in a hospital gown, sitting in a wheelchair. He was emaciated, very clearly capital-D-Dying. And he made eye contact with the camera, and then sang a very jaunty song about his own, very eminent demise from the disease. I remembered clearly three things: that it was basically about why you should be kind to him as he was going to die soon (particularly a phrase “forgive me when I’m mean”), a quirky little instrumental break during which he tap danced while sitting in his wheelchair, and the chorus phrase “cause I’ve got less time than you”.

And it stayed with me. I was…let’s see when this was released….ooh. I was 13. I remember clearly thinking that the song was funny, and not being sad for him at all, even though I knew he was going to die, and I knew that he knew it, too. The emergent Spooky Kid in me delighted in how morbid the whole thing was, and i loved the twisted sense of humor, but what resonated with me 30 years later was not the morbidity. I actually admired him for knowing that he was going to die, and having made peace with that, he was able to be so forthright with his needs. Since he knew there was literally nothing he could do about it, he decided to have such a wicked sense of humor about the whole thing. It was a quiet, desperate, dare you not to look away from it strength. LOOK AT ME, I AM DYING AND THERE IS NOTHING ANYONE CAN DO. NOW LAUGH WITH ME. He saw his own pending demise, and owned it. I wanted to be like that, too, if I could. Strong, unafraid, and funny.

The image of the tap-dancing dying man never left me, and indeed after my diagnosis, any time I prioritized my own needs over those of someone with a muddier, less terminal future, the chorus would pop into my head. I justified inconveniencing people (whether they actually felt inconvenienced or not was irrelevant to my broken brain) with a jaunty internal chorus of “cause I’ve got less time than you”.

I finally remembered to look for it online, not really expecting to find it. It was (exactly!) 30 years ago, pre-internet, and all I had to go on was “man in wheelchair AIDS song less time than you”. But I did find it. It took some doing to find an actual video (especially one that wasn’t an impossible-to-understand audience recorded live version), but my Google-fu is strong. His name was Rodney Price, and he died two weeks after filming this. He is my role model to aspire to while dying today, and he was my very first Death Positive Hero.

I give you Rodney Price, “Song From An Angel”.










Clinical Anxiety

Clinic was Monday! Let’s break down how it went, shall we?

PT/OT: My hands now no longer register ANYTHING on the strength test. Fuck. My arms are still plenty strong, though. My biceps are a force to be reckoned with from essentially doing push-ups on my walker every day. I have an appointment to follow-up with Deb the Awesome to reimagine my spider hand braces, since my wrists droop badly enough now they’re not helping much. It doesn’t do a lot of good to keep my fingers propped up if my hands as a whole are curling under. My finger joints are doing great though, still a lot of flexibility in them so I’m not going to be clawhands any time soon. Yay!

Dietician: (Hi, Kelly!) My weight remains stable, so I’m to keep doing what I am doing. I need to keep mindful of feeding myself while I’m at home, now, since I don’t have the routine of work to set that schedule for me. My mom doesn’t know to bring me food unless I ask her because she’s old as hell and eats like, a tic-tac a day and calls it a meal. (Hi, Mom, love you!)

Nurse: I forgot to ask her what my chair weighs. Dangit. It’s written down somewhere in my chart and I’m curious what that thing weighs without me in it. Combined, we are 627 pounds of geddafuggoutmaway. She arranged my appointment with Deb, and I didn’t otherwise have much for her. I rarely do. That’s a good thing.

Social Worker: Have I waxed poetic lately about how amazing the ALS Association is? Because damn. Single-handedly saving my sanity more than once, and saving my ass multiple times. We arranged for them to pick up equipment that I’ve borrowed (FOR FREE) that I no longer need because my disease has progressed beyond their use. We then spoke about some other situations that are stressing me out, like the lack of social services for my elderly disabled mother, and she promised to dig up what resources she could for my mom in our area. She sent me an email not even a day later with a bunch of places to check out. THAT is how amazing ALSA is. My mom’s not even on their roster, but because helping her would help ME, they were totally on it. I LOVE THE ALS ASSOCIATION.

Neurologist: Usually I’d be seeing Dr. Goslin, but today I met with her new partner. I’d seen him talk at the ALS Research Symposium, and I’d been given his bio before when I was asked to write something up for him explaining why the ALS Multidisciplinary Clinic was such an awesome thing. It was nice to meet him, and the dude has one of those old-school doctor bags that J wanted to steal. Plus for geek. It was a general get-to-know-you kinda appointment.

Speech: These appointments always go fast because I’ve got no symptoms at all yet. Puff up cheeks, move your tongue, eat this dry-ass graham cracker so I can watch you swallow. NBD, nothing to report.

Respiratory: Yeeeeeah this is always my absolute least favorite, not least of all is because it’s actually HARD. I’ve actually been noticing decline here, and since this is the part of ALS that actually IS going to kill me, I don’t like having a concrete measurement of how shitty my disease is. And yet. I want that measurement, so that I know, so that I can plan, and manage expectations. I came to this appointment knowing my breathing has gotten a bit worse lately; it’s taking a bit longer to recover when I exert myself, and there’s been a few times I wake up in the night because my breath is a little short. I also had to report that my CPAP machine (which I am now supposed to use every night) is busted, doesn’t power on at ALL. We are going to get me a new machine, called an AVAPS and I have no idea what the difference is because I keep forgetting to look it up.

Hang on.

“Noninvasive mechanical ventilation with average volume assured pressure support”

That tells me nothing. 2 secs.

…Oh. It’s…basically a non-invasive respirator. So it’s hardcore. OK then. That’s…intimidating. But I had the choice between getting my CPAP replaced or getting this new hotness, and since I still have Cadillac Intel Insurance for another year, I really want to get the expensive stuff now.

With that out of the way, we did all the usual tests. First they stick a rigid plastic thing in my mouth and I exhale as hard as I can to make these little indicators move; it measures cough strength. Cough strength is still normal; it was down ten points from last visit but she wasn’t worried about that at all. The next test involves a soft plastic mask over my nose and mouth and inhaling sharply; I always ace that one by going beyond what it measures; I guess I’m really good at..sucking…? Monday was no exception. The last test is the worst. Both in what it portends, and the work it takes to perform. My dudes, it is HARD. It blew goats even when my lungs were as strong as ten oxen. It involves inhaling deeply, plugging your nose, and then blowing out as hard as you can, for as long as you can, while getting encouragement shouted at you to GO GO GO MORE MORE MORE MORE and then when you can’t possibly exhale anything else and you feel like you’re going to pass out, another sharp, fast inhale.

Do that three times.

It actually makes J a little uncomfortable to watch, because it’s so obviously hard. It’s intense, it feels like hell, and at the end you have a number that represents your average lung capacity. When I started going to clinic, my scores were over a hundred percent – a very strong set of lungs. Over the last year, I’ve watched that number go down. She wasn’t concerned, really, even 80% was still really good! and she had no recommendations for me except to continue with the breath stacking exercises, which is where you inhale as much as you can and then use a balloon and tube to squuuuueeeeeeeeeeeeeze more air in. and hold. and release. And when you’re no longer light-headed, do it again. And again. I often describe it as reverse drowning, because that’s what it feels like. I do that, but not as often as I should. Six months ago at Clinic I hit 70% and she was a little less cavalier about me not doing them every day. 3 months ago on Clinic day, the machine was busted so I was spared. She wasn’t worried about it though, as my other tests were about the same as last time and she expected the same for this test, too.

I knew it wasn’t going to be the same. I feel a difference. When I eat too much food, I can feel that it’s harder to breathe – not that I’m short of breath, exactly, but I feel that when my lungs don’t have proper room to expand, there’s less strength in my diaphragm to bully the rest of my guts out of the way, maybe. It’s not harder to breathe, exactly, but I notice that I am breathing. And I was keenly aware that the breathing test this time was the hardest it’s ever been. I could feel veins on my forehead. She told me the result.

60%.

I’ve gone down 10% in six months.

I am now to do breath stacking twice a day, and sleep with the AVAPS every night, once it arrives. Next Clinic maybe we’ll do the respiratory early; having it be the very last thing in the day might have fudged my numbers a bit since I’d be tired. But somehow, I didn’t think that will matter. I didn’t take it well at all, and was in a shitty mood the rest of the night, and spent pretty much all day Tuesday crying or sleeping. I feel better now, hence why I have it in me to post tonight, but it kiiiiinda cemented something I’ve been thinking the last few months, something that I haven’t said out loud or posted or anything because I don’t want panic, either from myself or from any of you.

I am pretty goddamned sure I don’t have another 4 years.

I mean, it would be nice? But I’m not going to live to 50. I know that. I’ve been really fucking lucky to make it 4 years, and still be able to be on my feet awhile and wipe my own ass and everything. Some people with ALS don’t make it through ONE, and I’ve already had four, officially diagnosed, and probably closer to six since symptoms first appeared. I’m so, so fucking lucky. I get to see my death coming and plan for it. It was just rude as fuck to see that imaginary timeline become somewhat ..truncated, from what I was telling myself. But now, the part of ALS that will kill me has officially begun to kill me and I don’t have as much time as I thought.

You know what though?

That’s okay.

It really is. This is how ALS goes. This is normal. It’s okay. I’m alright.

Tonight, I am sanguine. There will be more freaking out; count on it. (See you at 3am, stupid brain) At this exact moment though? I have a clarity most people will never, ever experience. I see a world in 5 years without me in it, and it’s a good world and those I love are doing fine, in that long-term place. There’s a delicious release that comes with knowing so far in the future is officially Not My Fucking Problem. Today though, I am making many short-term plans. Hangouts with friends. An art show opening. The Walk to Defeat ALS on Sunday. A zoo trip with family. Neil DeGrasse Tyson – TWICE – in November. I still have a future to plan. It may be abbreviated, but goddammit I have SOME time. I get to make plans. It’s a fucking privilege to tell someone I’ll come to an event in April and know I can. After that. Who knows. My timeline is finite, truncated, and not guaranteed, but I have one. I can see what’s coming and make peace with it before it happens. I get the rare and amazing privilege to become friends with my own death.

And that is fucking awesome.










Seriously, why always 3AM?

I’m awake. Why the hell am I awake?
omigod so thirsty
Was dinner that salty, Body?
driiiiink sooooomethiiiiiing
I’m comfortable though, and the only thing I have in here is diet soda which has like, ALL the sodium in it. I’d have to get out of bed and get dressed to get a drink, and that’s not going to be easy to get a glass from the cabinet or anything.
HEY HEY HEY GUESS WHAT
Oh god. Yes, Brain, what.
SOON YOU WON’T BE ABLE TO DO IT AT ALL EVEN IF YOU HAVE WATER RIGHT IN YOUR FRIDGE YOU WON’T BE ABLE TO GET IT WITHOUT HELP.
Really? This is what we’re doing now?
yo i am still thirsty can you maybe angst later ok
I just want to go back to sleep. Can you just deal with being thirsty, body? It’s not like having to pee. We can wait. OK?
i am a parched desert but ok go off i guess
Just gonna lay here and pet my cats and sleep. OK?
DO YOU THINK WHEN WE DIE THE CATS WILL HANG OUT WITH US ONE LAST TIME OR DO YOU THINK THERE WILL BE OTHER PEOPLE IN THE ROOM AND THE CATS WILL RUN AWAY?
MotherFUCKER.
HEY DID YOU SEE THAT VIDEO OF THE CAT REACTING TO ITS DEAD OWNER’S VOICE? IT WAS ON FACEBOOK A LOT TODAY.
No, I did NOT because I knew it would make me cry a lot.
I BET IT WAS REALLY SAD, THOUGH.
I imagine so.
DO YOU THINK YOUR CATS WILL MISS YOU WHEN YOU ARE DEAD?
hey brain like shut up don’t make us cry
Seriously!
crying is really dehydrating
…Seriously??
loss of fluid is really important to me right now ok driiiiiiink soooooomethiiiiing
OK FINE, holy shit, I’m gonna get up and get a cup of water.
ok cool but now that we’re standing up, remember how I said we didn’t need to pee?
….Yes?
i lied and we are gonna
Don’t you DARE.
right now
NO.
we’re doing it
LET ME GET TO THE BATHROO….oh, GODDAMMIT.
YOU KNOW SOMEDAY SOON WE AREN’T GONNA BE ABLE TO CLEAN THAT UP ON OUR OWN AND WE ARE GOING TO HAVE TO MAKE SOMEONE ELSE DO IT.
…Fuck you both.
ACTUALLY WE WON’T EVEN MAKE IT TO STAND UP WE ARE JUST GONNA PEE ALLLLLLLL OVER THE BED AND THEN LIE IN IT.
maybe when they come clean up the pee they can bring some water cause we’re still thirsty
I hate you both so much right now.










A is for ALS

A is for Almost.

Two more days. TWO MORE DAYS. And then I’m done with my working career. Three weeks of vacation as a formality. The rest of my life is a blank book, with ALS having already written in all the margins.

A is for Atrophy.

My muscles continue to waste away as ALS kills the neurons transmitting signals to them. My legs are meat stilts, capable of minor movement only; walking on them is a matter of mechanics and getting my knees to lock properly so I can balance ON them rather than WITH them. My hands are curling up into claws of uselessness. My mouth still works, to the detriment of some, and my brain always will. My body is wasting away into the meat shell it will eventually become.

A is for Avoidance.

Most days I don’t really think about it all, except as an abstract idea. Sure, I’m going to die. I have that roadmap. In my day-to-day life, though, the Big-M-Mortality idea makes way for the general practices of getting through life. ALS intrudes in all things, of course; drinking a soda is now a two-hand operation and I can never even pretend that my life is normal again. All of that, though, is background radiation anymore. It’s amazing what can become normal, given time.

A is for Abbreviated.

My life has a shortened length. For some ALS folks, this throws them into a fervor of living as much life as possible in the time they had left. I didn’t go that route. I’m far too pragmatic to have abandoned my job and traveled the world while I still could. I focused my efforts on making my future life more comfortable, and that meant working as long as I could. If we had universal healthcare I wouldn’t have had to worry about it so much.

A is for Adjustments.

The disease progresses, and whatever I could do a month ago, I can’t necessarily do today. Life is a constant series of micro-adjustments and new behaviors, new rules and limitations. I learn of these new limitations, often the hard way, and another compromise with life is created. The new normal evolves.

A is for Afraid.

Just cause I’ve accepted death, doesn’t mean I’m ready. I’m terrified of what this disease will continue to do to me, and what it’s going to cost my loved ones. What it’s already cost them. I hate that I’m so reliant on everyone around me, and it’s going to get so much worse.

A is for Advance Directive.

Seriously, you have to have one. Fill it out today. If I have one positive impact on your life, let it be that I inspired/coerced you to do this one thing. It’s a hard thing to think about, I know, but your family needs to know what you want. They can’t know unless you tell them.

A is for Assisted Suicide.

I don’t know for sure that I’m going to go out this way. But I’m grateful every fucking day that I have this option.

A is for Anger.

I don’t think I’ve ever questioned “why me” so much as outright stated, “It is pretty fucked up that this is happening to me.” No one deserves ALS. (There are a few people I would like to have it temporarily though. It’s a short, sharp lesson in humility and reliance on others.) I’m angry that this disease exists at all. That we know next to nothing about it. It’s brutal and unfair.

A is for Allies.

It’s absolutely true that you don’t know who your friends really are until disaster strikes. I’m grateful in a perverse way for this disease, for showing me what grace actually looks like. I knew my friends were awesome before. I didn’t quite understand the enormity of that power they have. I do now; I am witness to it every day.

A is for Alive.

For now. I continue to breathe, and so I will continue to write and think and feel and rant and swear. And as long as I am alive, I can bear witness to the ravages and the comedy and the love and the struggle and the disaster my life has become. Al of it, often at once. And so long as I have the best medical care team on my side (I do!), the support and love of friends (check!), and a sense of humor about it all (absofuckinglutely), I’ll be okay. Even when I’m really not okay. And when I die, you will know that it was all okay, too. Somehow. Someday. You’re going to be okay.

A is for Acceptance.










What’s Next

Three weeks, one day. And God knows how many times more I have to repeat this conversation:

“So what are your plans after you leave?”

“Well, for the first two weeks of vacation, I plan to sleep. I’m purposely planning to do absolutely nothing for those first two weeks. It’s going to be GLORIOUS. After that, I’m not really sure. I will probably volunteer somewhere. I will go absolutely crazy with nothing to do for too long. So I’m not sure. I’ll figure it out.”

“Well good luck to you.”

Cue uncomfortable undertones, awkward silence, shuffling to exit the conversation. In reality, here’s how I would like that conversation to go:

“So, what are you going to do after you leave?”

“Die.”

I mean, that is what is going to happen. That is why I’m leaving. I can no longer work because I’m going to die. But because we suck at conversations about dying and death, because our society is so uncomfortable with the mere mention of the D-WORD, in polite society I’m not allowed to say that. Even though we all know it’s true, and no shit, right? Medical retirement; I am leaving because I have a medical condition that is debilitating and ultimately, sooner than we want to admit, terminal. THIS DISEASE IS GOING TO KILL ME DEAD, IS ALREADY KILLING ME, I AM NOT LEAVING BECAUSE I WANT TO.

And so instead, I am forced to have the same inane conversation. And even though they know the real answer, the true answer, I go through the motions and come up with some stupid answer that denies my own impending mortality. I mean, what are they honestly expecting me to say? “Oh, you know, I figured I would take two weeks in the Hamptons. After that, perhaps pursue my scuba certification and do a week in the tropics. Learn a new language. Take up waterskiing maybe. Maybe learn a new vocation. Maybe finally get my baking business off the ground.”

For fucks’ sake. No. I’m going to continue to get my affairs in order, and eventually I am going to fucking die. I am going to keep losing abilities you take for granted, like feeding oneself and scratching your nose and breathing and not peeing your pants. In the meantime, I am going to continue to collect stickers, watch cartoons, and pet my cats until I can’t, and then? I am going to die.

Because ALS is a motherfucking terminal disease.

Three more weeks and one more day of this bullshit conversation replaying itself over and over. Three more weeks and one more day of pretending I’m leaving because I want to, and not because this disease is forcing me to. This has made me extra specially grateful for all of the people with whom I can actually have that frank conversation – the ones who don’t pretend not to notice that my hands are no longer working. The ones who, if they actually asked that question, I could out right tell them “die”. But they know better to ask. Because they already know. So instead they ask how my cats are doing (they’re good!), if I’ve found a house yet (not yet! The housing market in Portland sucks major ass), how well does SSI pay out (not well, but my job has awesome supplemental disability benefits)? Better, more important questions.

Death positivity kids. It’s sorely needed. I crave it like sugar and hugs. I want, I NEED to be able to have these conversations without feeling like I’m intruding on someone’s fragile psyche. Instead of what do I plan to do with my time, like it’s some summer vacation, I would rather people ask me if I have my affairs in order? (Almost!) Do I have a living will? (Yes! And a POLST form!) Do I had support I need the time I have left? (I think so!)

Three weeks and one more day. Before I can get on with the business of dying, instead of pretending like I have some plan for my future.

Because I don’t really have one, anymore.

And you know what? That’s okay. It’s normal. Not everyone gets to see 50. It sucks and it is sad, but it is normal.

Unlike this stilted-ass conversation I keep having with y’all.










Hypocrite

Me: “Some diseases are invisible. Just because you can’t physically SEE pain, doesn’t mean it’s not there. It’s not up to you to validate someone’s disability; no one should have to prove they’re ill. There are no ADA police to determine who qualifies as disabled or not.”

Also me: “Motherfuckers buying ADA seats at theater performances should have to fucking PROVE THEY NEED THAT SEAT. I am so sick of shit selling out because some bitches with no actual mobility problems bought out the only SIX goddamned wheelchair spots in the whole fucking theater! WHAT IS YOUR MOBILITY PROBLEM, MOTHERFUCKER, THAT YOU NEED TO SIT THERE.”

….This is why, anymore, I don’t ask friends to join me at events. I don’t wanna see five mobility spots taken up by four able-bodies schmoes and me.










Unkind

I was told twice yesterday that I had been unkind. Once about a caustic post I’d made that I didn’t realize had such a caustic tone, which I didn’t intend at all. Once about letting in-character anger spill over into an out-of character moment during a game.

It’s fucking with me more than I want to admit out loud.

I want to think I’m patient and a nice person. I want to BE a kind and soft person. With swearing as needed. I also want to think I can take constructive criticism. Both times, I tried to take the information in with a whole mind and open heart. I freely accepted valid points, admitted areas of ignorance – I genuinely did not realize my irritation with a sub-group of people spilled over into a perception of complete disdain and impatience for a related whole category of people. I vowed to be more aware, and work on it, and thanked them for bringing it to me. It’s a brave thing, to tell a friend they’re being a bit of a bitch.

But it’s fucking with me.

I don’t want to be unkind. It bothers me that someone would think I am. It bothers me that I speak without careful consideration, to have words and actions misconstrued.

So I lie awake until 3AM mulling over every interaction I had that day, wondering who else thought I was being a bitch, and what I can do to make amends. Usually these criticisms are self-inflicted, so coming from an external source, that knows me well, is especially jarring.

Before I moved away from Sacramento, several friends told me later, I became a bit of a bitch. My joking a little too caustic. I wondered if it were a subconscious self-defense mechanism, distancing myself from people I cared about in an effort to make it less shitty to leave.

I’m terrified of doing that same thing, knowing that I’m dying. From Diagnosis Day I have been fearful of being that embittered person in a wheelchair, lashing out at loved ones because I’m afraid to leave them. To be remembered as a total and complete bitch at the end of my days, in an effort to somehow distance myself from them so that the parting will be easier. Knowing it won’t help a goddamned bit. I do not wish to be a caustic person with nasty words where my love should be.

I’m glad my unkindness was called out. I’m glad I have time to work on it.

But until I am nothing but kind, it’s gonna fuck with me.










Saddiversary Part the Fourth

Four years ago, I was told I was going to die.

Everyone dies. To know the mechanism of your demise, though, is a terrible and powerful thing. Oh, certainly, something else might kill me before ALS squeezes the breath from my body, but there is now a subtitle to my timeline, a definite path. The future is a language tainted with exceptions and qualifications.

I took the news and buried it deep in my chest that day, taking the bus home alone. I don’t remember what I was thinking. I remember tripping over a curb walking home from the bus stop. I remember wincing internally, absolutely certain that was going to be the catalyst for the meltdown to come. It wasn’t. I picked myself up, and thought to myself, “There will surely be much more of that.” I got home, looked around the house I had just bought, the house I would no longer get to keep, and wondered how the ever loving fuck I was going to break it to everyone.

My life is a timeline of things lost, now, a perverse sort of baby book in reverse. Vashti’s last unaided steps. Vashti’s last time putting on makeup one-handed. Vashti’s last time dressing up all by herself. Vashti’s last time feeding herself. Vashti’s last words. Vashti’s last breath, someday.

For now, I can still speak, and breathe, and feed myself mostly. I need help cutting food these days, a job my friends do graciously. It’s very sweet, even. Walking with a walker is still possible, but exhausting, and it feels more precarious than ever. I stay in the wheelchair when I can. I have the motorized one now, but no way to transport it (but I’m working on that!). My hands are just about useless; I type with two fingers that have very little strength left in them. I need two hands to lift a soda can to my lips. I bought a hand strap yesterday to put eating utensils in because I’m almost unable to grip them. Bladder control is almost completely a thing of the past.

But you know what? Fuck this disease. It doesn’t own me. I have to make allowances for its dumb ass, but it’s not who I am. I am still going to eat at all the fancy places. I am still hanging out with my friends. I am still working. In one week, I will have another birthday. I am still planning for a future, even if that future has heavy caveats.

Because fuck that shit.

Even four years later. Even knowing what it’s going to take from me. Even though it would seriously be so much easier to end it now, before it gets REALLY hard. Fuck that shit.

My saddiversary has come around once again, and it’s one more year I can give this disease the middle finger. It doesn’t fucking own me. Even after I’m a non-speaking, drooly, pees-my-pants useless lump of meat, it won’t own me. Even if I decide to take my own life before it gets that far, it doesn’t win.

One more year down. One more point for me.

Fuck yeah.










Keep Your Mouth Shut, Or Just Say You’re Sorry

We’ve forgotten how to die. We’ve forgotten how to be dying, and how to comfort. How to be okay when things are definitely Not OK.

We’ve lost the ability to not be absolute shitheads to each other by accident or ignorance when something terrible happens.

In my adventures with dying, I’ve accumulated quite a wealth of pretty words and useful words on the subject of death, dying, and grief. I’ve always meant to catalog and share them. When a friend who’d lost their mother was told today that she’s going to hell because she refuses to just leave her grief up to God and put on a happy face, I kiiiiiinda lost my shit. And knew the time to publish this is NOW.

So here it is, A Grief Primer.










Accommodation

Fun fact: I AM A GIANT NERD.

You already knew this. Probably. Almost definitely. If not, welcome to me; I’m a giant nerd.

Most every Wednesday, I play a table top role-playing game with a group of guys that have become good friends. We are virtual murder hobos, adventuring and killing monsters and arguing amongst ourselves about which monsters need killing, and it’s a lot of fun. I absolutely adore the group. The only hitch at all is that my stupid disease gets in the way a lot – I’ve had to miss a lot of games because of appointments, or a couple of times I’ve fallen and hurt myself, or sometimes my mana is just too damn low to deal, or once or twice Sadbrain said nope. Luckily, they’re very cool about me missing games; they understand. We had a talk once to just make sure that it wasn’t that I was not enjoying the game but was too polite to say so, so I was making excuses; once they were assured that I absolutely enjoyed the game but my disease is stupid, we were all good.

Part of that hitch is getting to the place we game. It used to be at the storyteller’s house, which had two steps and no rail. It was…not fun getting inside. Luckily before that became an impossibility, we switched to another player’s house, which has just one step. Much easier. Still an effort, and some days a Herculean one, but better. This last Wednesday, I had low energy, and I sarcastically complained to J as we were heading over, “Tim needs to get a fucking ramp.” If J didn’t drive a little car, I’d probably have bought one of those portable ramps to just carry around with us for these occasions. It would definitely make things easier. I’d never actually expect someone to modify their home for me, obviously. But some days it probably would be the final straw in deciding if I had the energy to go to to game or not. Stupid disease.

We pulled up to the house, and everyone was standing around outside, which was…odd, because it was cold as hell. We usually start game at 5:30, but we were told tonight was a late start, so maybe everyone had just gotten there. I got out of the car, and they all kind off…turned to face me. Matt, the storyteller, told me that they all understood that I had hella circumstances and that it made it really hard for me to get to game sometimes. For a moment, I thought, “OH shit, they’re kicking me out of game because I’m unreliable. Well, I can’t really blame them.” He continued to say that they really appreciated the effort I made to show up, and that they all wanted to make sure that I’m able to continue doing it for as long as I can, so…they all parted to show me something behind them.

Guys.

GUYS.

THEY BOUGHT ME A FUCKING RAMP.

To get in to the house. A ramp. For me. And they even put stickers all over it.

For me.

One of the worst things about acquiring a disability is feeling like you’re a burden. Your friends and family have to make plans around your diminished abilities, suddenly old traditions have to be abandoned. Even though everyone insists – INSISTS – that you’re fine, they want you there, they’re happy to make the changes, you can’t help feel guilty that they’re missing out on cool things because of you. A lifetime of Sadbrain convincing me that I’m not worth the effort in the first place does not help the matter, and I’ve worked my whole life to make that voice be silent, with very mixed results. In the meantime, events are missed, changes are made, things are rearranged, and my friends and family do their best to accommodate me and tell me it’s alright.

Funny word, accommodate.

It can mean providing sufficient living space, or making a compromise, or adjusting to something new. It means somehow going out of your way for someone. In my world it’s usually got a slightly cynical sister word attached, “reasonable”, when dealing with work and places of business. Reasonable accommodation. Legally doing the absolute bare minimum in order to convince ADA enforcement laws that you’ve done …something. (I’m a little bitter, yes)

When it’s your friends, though, and you know they sure as shit didn’t HAVE to do anything, that they made an effort because they legitimately want you around, and here is absolute proof? Yeah I totally teared up. It was an amazing thing. A selfless thing. An important thing.

It makes dealing with it easier. It makes being alive easier.

It makes it WORTH it.










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.










Can-tastic!

Ok, so this isn’t one of those “little things have big impacts” kind of stories, though it sort of is. It’s a “help from unexpected sources” story more than that. In a really stupid goofy way. Some background:

1) My friend Nathan bought me a subscription to LootCrate. I’ve raved about that before, but let me do it again. We weren’t ever really the best of friends or anything, just work friends, and we lost contact for a few years. Like ya do. When he found out about my diagnosis, he bought me this subscription so I could have something fun to look forward to every month. It was an unexpected surprise and I can’t even remotely convey how much joy this brings me, for a lot of reasons.

2) LootCrate is a collection of VERY geeky things, from all kinds of fandoms. I’ve gotten t-shirts from Teenage Mutant Ninja Turtles to Overwatch to James Bond and everything in between. It’s current pop culture and retro childhood stuff, and I’ve gotten a lot of really awesome swag, including stuff you literally can not get anywhere else. Tetris fridge magnets. A Tron pencil bag that glows in the dark. SO MANY TOYS. And awesome aforementioned t-shirts. Like, half of the t-shirts I wear are now LootCrate shirts.

So this month’s crate theme was “animation”. It included swag from a couple of things I’m not that into (it happens, but I ALWAYS find someone who really loves said fandom and is happy to take things off my hands), and drink koozies from the show Futurama. Full disclosure? I’ve always kinda hated drink koozies. They strike me as a bit white trashy and that’s not helped by them USUALLY being branded with some stupid or plain offensive not-really-a-joke. But I loved Futurama, and this was a fun thing, and I’m ALWAYS drinking soda (Sorry Kelly, I know I need to be drinking water but CHERRY COKE ZERO IS DELICIOUS), so I slid my can into one.

Oh my god guys.

THE CAN IS SO MUCH EASIER TO PICK UP.

I typically have to use two hands to pick up a full can of soda, and as I drink it, I press a dent into the can to help me grip it. Hang on..lemme take a picture.

Every can I drink from has that little divot for my thumb. heh. But with the drink koozie, I don’t need it! It’s squishy so I can get a good grip on the thing without leaving a little dent in. I bet Nathan never knew he was signing me on for handicap aids. But that’s what I got this month, and I never would have figured this out on my own.

So that’s a happy thing that happened.










A New Awkward

This morning, while being wheeled into work (because J is a freaking rockstar of awesome), we met up with a former coworker of ours. This woman is French, and has a super thick accent, and is very sweet. She hadn’t seen me for quite a while, and the walker was new to her.

“Good morneeng, Vashtee, are you okay? Deed you hurt yourself?”

“Oh! Hi! How are you?”

“I am good, but zees walkair, are you okay?”

“Oh. Uh.” I looked at J, who was no help. He was busy trying to get my wheels over the building’s threshold, something we struggle with every morning. “Not…really? I..have ALS.”

Blank look.

“Lou Gehrig’s?”

“I have not haird of zees ALS, what ees eet? Are you going to be ok?”

“It’s…” Ugh. What do I tell her? I’m gonna die, sorry we haven’t seen each other in awhile?
She misinterprets my struggle as reluctance. “Eet’s okay, you don’t ‘ave to talk about eet, eef you don’t want to.”

“Oh, no, no.” I settle for, “It’s a degenerative disease, I’m losing my ability to walk.”

Even that slice of information makes her sad. And it’s awkward. A new kind of awkward, a language barrier, subtleties of tone and subtext kind of awkward. Usually if someone doesn’t recognize the names of my disease, I can say, ‘neurodegenerative’ and they infer the ‘terminal’ part by tone and expression. And then we move on. But she doesn’t understand, and I don’t want to be so crass as to just cheerfully say “I’m dying” as I do with folks I know better, but there aren’t better and simpler words that are gentle. So I leave it there.

Delivering news of a terminal diagnosis is hard. I have complete empathy for doctors, this has to be the shittiest part of their job. But when the diagnosis is yours, and that relative/friend of the patient is a dear friend/relative of yours, not just some professional duty, it’s harder. It’s a strange and terrible combination of delivering devastating news and divulging a horrible secret. And watching the parade of emotions cross your faces, the ‘holy shit this is awful but this is HER dying so I can’t be selfish and grieve on my own behalf I have to be strong for her and not let it phase me but holy GOD, man I can’t believe she is DYING but she’s standing there looking like she’s sorry for ME..’ That part doesn’t get less awkward.

The worst time was when I told Danielle. She started crying, and when I reached over to comfort her, she brushed me off, dismissing her tears with a headshake and “It’s not about you.” I still don’t know what the hell that was supposed to mean. But I never asked.

Delivering the news hasn’t gotten easier. I’ve gotten better vocabulary, gotten a smoother delivery, but telling someone who has English as a secondary language was an all new difficulty level for me. It was an interesting experience.

A new level of awkward.