Record Scratch

The most intense, personal, physical feeling is not an orgasm.

It is someone scratching an itch you had for hours.

I knew this would be a problem – it’s actually one of the few things that I did realize was going to be a problem. The itching. It’s very frustrating to have a itch that you can’t scratch, and not even being able to wiggle to get some relief is torturous. I’ve actually gotten panic attacks from itching – being so helpless with such physical intensity, knowing you can do absolutely nothing about it.

This is where other people come in. I will regularly ask Jay for scritchies, and sometimes the relief is so intense my eyes roll in the back of my head. Now that it’s winter, of course my skin is drying out, so more scratchings. He’s a saint to put up with it, and to cater to me so well. It’s an intimacy, someone else scratching an itch. And I am here for it. Hallelujah.

Fuck you, it’s funny.

“Should I throw these out,” J asks me, indicating a pile of adult diapers beside the toilet. They have tabs to close them on the sides rather than being the step in brief kind I usually wear. I’m not able to stand and pull up briefs on my own anymore, so I bought these to try out, in a bid to hold on to my autonomy. It was a massive failure; I’m not able to get them under my ass properly, never mind operating the Velcro-like tabs with my failing hands.

“No, keep them,” I tell him. “Once I’m not able to get out of bed at all we’ll want them. You’ll need to undo the diaper, get me in the sling, lift me up, get the diaper off me, get me to the commode or whatever to do my biz and them lay out a fresh diaper. We’ll need the tabbed diapers.”

“I thought we said we didn’t want kids,” J tells me.

We laugh our asses off.

*************

The clip on my catheter bag has somehow come undone and there is a pool of pee next to the bed. I’m mortified, of course, and feel terribly about J having to clean it up.

“Someday I’ll be dead,” I tell him brightly, smiling like a television ad, “and you’ll never have to clean up my bodily fluids again!”

He eyes daggers at me while I laugh, like, “what the fuck is wrong with you.”

*************

Some days, the gallows are hilarious.

The Thing Is

The thing is.

The thing is after a year of suppressed grief, after a worldwide trauma, after trying so hard to keep your shit together and just survive a debilitating and humiliating disease, a fucking pandemic, buying a new house, moving into said house, isolating from all of your friends and family, from society, and being unable to celebrate milestones in a way that you deserve to…

The thing is, when you get that first injection. That first vaccine hit. The first hint of “maybe this is going to turn out okay”. That first glimmer of hope that maybe things can return just a little bit to normal. You find yourself letting out a breath you didnt even know you’ve been holding. Your brain shifts out of survival mode, and allows you to think and to feel a little bit of everything you’ve been holding in for the last year.

The thing is, maybe you fall apart.

Maybe fall apart and write a really angsty blog post about how it’s been seven years since you got diagnosed and you just kind of emotionally barf all over the Internet.

The thing is, I’m much better now.

The second shot was a fucking doozy, as advertised. But it came with a sense of peace. In two weeks after that, it came with the promise of normalcy. Not long after that, I had friends in my room, unmasked, chatting like nothing had ever happened. There was one quick moment of panic –OH MY GOD THERE IS SOMEONE SITTING ON MY BED WITH ME AND THERE ARE NO MASKS WHAT THE FUCK ARE WE DOING – and then it was over and then we were talking like old times. Natural. Normal.

This thing is, it was really really nice.

And then I got together with another group of friends last week. We had Moroccan food. We played games and bullshitted all night and again, it was nice. Normal. I had forgotten what conversation tasted like.

The thing is, there is definitely an end to all of the madness. I can see it from here. It’s lovely. Wait for it.

It looks pretty good from here.

The thing is, we’re going to be okay.

CBDon’t

Let’s talk about drugs, baby
Let’s talk about THC
Let’s talk about all the good thing and the bad
About C-B-D!

About five years ago, I documented my experience and thoughts about marijuana. They were… Not exactly complementary. More a diatribe, if I’m being honest.

My conclusion then, and remains today, that I fully support the use of cannabis for whatever purposes the user deems fit, and I fully support it being legal everywhere for all times.

I still don’t like being high, and THC does nothing to alleviate any of my symptoms. There was another experimentation with THC between then and now, and I found an edible that got me high without making me sick, and it just cemented the fact that I really don’t like being high. So I gave up on cannabis entirely for a very long time. It’s done some very amazing things for people I love, and I completely believe it has amazing medical benefit potential and wants more research, for sure. I’ll not disparage its use for anybody else, it’s just not for me.

I really wish it were. I really wish it worked for me.

I’m currently on three different drugs for mental health. Two for depression, one for generalized anxiety. It’s difficult to say if they’re working or not really, because I have legitimate reasons to be depressed and anxious and so it’s hard to tell what’s genuinely a good day and what is the medication making things okay. They’re definitely helping; I have less sad brain days with the meds than without them, for certain. ALS just puts everything on hard mode, and this year has exacerbated all of that beyond belief. Of course I’m depressed and anxious, I have a terminal disease, but I suffered from those brain problems even before I was diagnosed. When those three drugs don’t quite cut it, and some nights they don’t, I have a scrip for Ativan to take the edge off. It definitely helps. It zones me out and usually negates any panic attack I may be having at the moment. Which is nice.

The problem is I don’t always want to zone out. If I’m having a full-blown panic attack, then certainly, yes, please God, zone me out, make it go away and let me breathe. Quickly. But in general, my level of anxiety is far less dramatic than the mind racing, can’t breathe, holy shit I think I’m actually going to die RIGHT NOW panic attacks. An ongoing low level panic attack perhaps, a buzzing in the back of my brain, 1,000,001 things clamoring for my attention and every single one of them stressful and sad.

There’s just so much to think about, things to do, things to plan for, everything coming at me at all times from all sides. It’s really easy to get overwhelmed. The tiniest little side thought can lead to a spiral of panic and fear. A television show that shows someone in a hospital, connected to machinery and unresponsive? My brain automatically thinks “that’s going to be me someday, and how I do not want that life for myself”. WHEE DOOM!! Wondering if my loved ones will have the strength to let me go when it comes to that. A character finding it hard to find the right words to say will lead me down the road of thinking about how I’m not going to be able to speak at all someday. Usually I can fight the downward spiral, but not always. Some days I lose.

I have so much to do. I have so many plans to make, things to document, wishes to make known and official, legal obligations to fulfill before I die. There is never a moment in which I could not be doing something to help my loved ones through my death. Items to be sorted. Organization to be done. If I don’t actively fight it, I fall into an anxious despair just thinking about everything that I have to do and being so overwhelmed I end up doing none of it and feeling trapped and never feeling like I can just… take a breath. I sit here and do nothing all day, knowing full well that my time is short. The weight of those obligations makes it impossible for me to relax sometimes and the crushing anxiety of all of these responsibilities stifles me constantly and I spiral.

Some days I just want to not think so hard. Turn my brain down a little, not off. Sometimes I just want to breathe a little bit. Not necessarily forget everything, but just an emotional step back and a breath of fresh air. Get a little space between me and my anxiety so it doesn’t seem so insurmountable.

So what’s a girl to do?

A month or two ago, I was out doing errands – properly social distanced and very careful of course, I’m not a covidiot. My friend and I were both pretty stressed out, in general because… gestures vaguely at everything… and because of the pressure of the errands and danger being out in the world. One of our stops was a store called New Seasons, which is like a small local Whole Foods but it doesn’t suck. While we were there, we noticed they had a special on CBD drinks and we had both been curious about it. Now, I had tried pure CBD before as a tincture and it did nothing for what I was trying to do with the time. It didn’t affect my headaches, my twitching, my panic attacks. But I know a lot of people that swear by CBD, and extol its virtues for everything – particularly stress. It’s becoming much more prevalent and accepted for its benefits. So that being said, and everything being what it is, my friend and I figured what the hell, and bought one each and drank it.

SELTZER WATER AND POT IS NOT A GOOD TASTE BY THE WAY. VERY BAD. EVEN IF YOU SAY IT IS BLACKBERRY FLAVOR IT IS POTBERRY.

And a little while later I felt… Okay. A little more relaxed, maybe. Feeling a little more capable of handling things at the moment. We were able to finish up our errands with a bit more calm.

Relaxed until the aftertaste hit of course. BLEAUGAHAUGHERGH. POT TASTES SO GROSS!!

Pot burps notwithstanding, it was much more in line with what I wanted. Not brain-dead, not staring at the walls, just a little more emotional wiggle room. And I fully concede that it may entirely be a placebo effect. But if it works, then fuck it. Even if I just believe that it works and is doing nothing. GOD BLESS THE PLACEBO EFFECT.

So I guess I’ve made peace with cannabis. I found something that does something. It does not, however, do one major thing that I really wanted it to do – I really wanted something to stop my brain over thinking before I fall asleep. Because THAT’S when the anxiety and depression get me. I stare at the ceiling and my brain spins for over an hour before I’m able to fall asleep finally. I wanted CBD to take the edge off of that and let me just rest, maybe. Nope! Turns out CBD can cause nightmares, apparently? Anecdotally, mind, it’s not been properly studied (get on it, Science!), but it apparently does with me. I already dream weirder than most, my subconscious does NOT need any chemical assistance with coming up with unpleasant situations involving insect faced people in a gorefest speakeasy shootout or menacing floating toasters in my bed about to touch me. So apparently I can’t take it right before bed, which is too bad. I’ll be sticking with Ativan and Ambien for that when things get rough.

But for now, at least I found a little daytime breathing space. Which is amazing in itself.

I will fully accept that minor victory.

Washed Up

Yesterday began quite poorly. The tube going to my catheter’s drain bag popped out during the night, and apparently I slept hard enough I didn’t wake up until you could wring out my pajamas like a washrag. Thankfully I sleep with a mattress protector so it wasn’t a total disaster. Unfortunately my port is accessed right now, so I couldn’t take a shower and had to make do with washcloths and soapy hot water.

Fortunately I have a J. He’s more amazing than I could ever tell you and OH HOW I HAVE TRIED. He’s working from home, so he brought his work laptop over to monitor work requests and emails and changed out my bed. Best. Friend. Ever. While he was putting things through the wash, he asked me where a particular soap was.

“I don’t fucking know,” I told him, exasperated and in a bad mood. “Why would I know? I haven’t done laundry in TWO YEARS.”

The universe did a record scratch and the words turned to ash in my mouth.

“Thaaaaaaaaaaaat was not a happy thought,” I said quietly. A gross understatement. I haven’t done any real cleaning in my apartment in about two years. I can’t push a vacuum cleaner or wash a window. I can barely even wash my own hands. If I didn’t have my mother living with me to bring me food, I’d be screwed.

I know I am not just worth my productivity. I know I’m worth more than what job I can do, what tasks I can perform. But sometimes it’s so easy to forget. It’s easy to feel worthless when you have no tangible contribution to make. After a lifetime of hard-won self reliance, losing that control of my own destiny is a hard lesson I’m still learning.

And until I do learn – if I do learn – then every self-awareness moment like this is going to continue to punch me in the guts. All I can do is try not to let it under my skin so much when it does.

Meanwhile, I have a J to help me wash the sheets. Even if I don’t know where the soap is.

COVID Operations

So. 2020, huh?

HAHAHAHAHAHhahahahooooboy.

I came into the new year at a handicap – no pun intended. The holidays weren’t particularly kind, it feels a bit like I didn’t get a proper Christmas and with my Christmases so limited I really felt robbed. The new year was particularly rough. It was a prime chance to feel incredibly sorry for myself. Everyone was reflecting on the last decade, which forced me to do so as well, primarily reflecting on how much the last 10 years took from me. I lost my romantic partner. I lost my best friend. I lost my house. I lost my health. And then everyone started talking about the new decade, and all of the marvelous opportunities it was going to present, and I’m just sitting here thinking I don’t GET another 10 years. It is supremely unfair.

So yeah, not a great start. And then the world just conspired to keep everything as shitty as possible. The idiot in charge nearly started World War III with his playground bully behavior. Australia caught fire. And now this pandemic. Everything’s going wrong. It’s very easy to feel helpless and hopeless.

At the risk of sounding like a motivational poster though? I’m in a uniquely privileged position right now. Terminal diagnosis aside, I have a LOT to be grateful for. I’m very worried about COVID of course, but not in any immediate way. I know damn well with my already hindered breathing, catching it would basically be a death sentence. But I’m smart. I’m careful. Those people I physically interact with are also careful. I worry about it in a vague way, but all of the day-to-day concrete problems that are affecting most people aren’t touching me right now and I am incredibly grateful.

I don’t have to worry about losing my job, because I’m already medically retired. I don’t have to worry about keeping my job or finding a new one when this is all over. I don’t have a job to force me to interact with the public on the daily.

I don’t havr to worry about making my rent, because I’m on a fixed guaranteed income. Until they take away Social Security and disability benefits, I am secure financially. These stimulus checks everyone’s talking about would be nice if they happen? But I don’t NEED it in a strict sense. I have savings. Granted, they are earmarked to buy a house, but if things went seriously pear-shaped I can float us for six months. This pandemic has not been a financial hardship for me.

I don’t have to worry about cabin fever, because I’m an introvert by nature. I’ve always been self entertaining. Being pretty much bedbound for the last year or so has honed my skills to a sharp point. I have a lot of things to entertain myself with. Though of course now that I’m told I can’t socialize, I’ve been wanting to. I’m not an introvert or an extrovert apparently, I’m a jerkivert. I’m more like a cat than I thought; I do crave interaction but only on my own terms. And if you tell me I must remain away that’s when I want to be around. Meow.

I don’t have to worry about supplies, because I’m naturally the sort of person who buys groceries for 12 people even though there’s only two of us. Right before all this went down, I had bought a case of toilet paper and paper towels. There is food literally overflowing my pantry, I have a freezer outside in my storage unit chock-full of food. We are well stocked for a couple of months of absolute isolation if we had to be.

I don’t have to worry about emergency supplies either, because I have so many incredible people in my life who have made a point of asking me if I need anything. I’m already well acquainted with mail order, so that’s also been a blessing, but if I needed anything in emergency I can think of six people off the top of my head who would go get it for me. I am safe and secure and well positioned for whatever needs arise.

I don’t have to worry about a support network, because I already have the best one. We keep each other safe and protected and loved and secure. We do kind things for one another whenever we can, and I quite literally do not know how I would survive any of this without them. This includes you also, dear reader. I’m reminded time and time again that the kindness of strangers is a very real thing. You keep my faith in humanity alive. You give my optimism a serious reason to exist. There’s definitely precedent.

And so until – or IF it even happens – until myself or my loved ones contract the virus, this whole pandemic thing hasn’t fazed me, really. I’m in a good position to deal with this. I’m actually in a pretty good position to support others who are going through it, and that’s a massive blessing. Or stroke of luck. Or happy circumstance. However you want to view it. Things aren’t that bleak right now. It could have been so much worse for me. I’ve said it before, I will say it again, probably 100 or more times on this blog even – I am a very lucky woman.

I’m so fortunate to have what I have.

So how are you folks holding up? Anything I can do to help you?

Not Safe for Television

Generally speaking, there are two reactions to a terminal diagnosis. The first is to try and cram as much life as possible into the time remaining – you become obsessed with completing bucket list items, reaching out to estranged loved ones, and generally doing all of the things that you swore you’d get around to but never did. Your remaining life becomes a frantic race against time. The second reaction is to go about life as usual; either through pragmatism or complete denial, nothing really changes about your day-to-day.

I’m absolutely in the second camp. I’m a complete pragmatist. And honestly, I just don’t have the energy to be at first kind. There are a lot of things to do that I would have liked to complete, but I’m not going to devote my life to checking off boxes. I will go out of my way to see more shows and hang out with those I love more, but really that’s about the only concession I’ve made. I’d have loved to go to Japan, and I could probably still make that happen if I REALLY wanted to, but now it’s just too much of a pain in the ass.

To a lot of people this probably seems like I’m wasting what little time I have left. I spend the vast majority of my time at home, in bed, screwing around on the Internet, and hanging out with my cats and my best friends. This is exactly what I would be doing if I did not have a terminal disease. It suits me just fine.

While I’m screwing around on the Internet though, I usually have something playing on the television. There are a set list of things that are probably on my television at any given time, even when I’m sleeping. Nature shows, Mr. Rogers, Bob Ross, science programs like Cosmos or anything by Brian Cox, Invaders Zim, Monty Python. Those are the main ones. There are also movies that I will watch over and over like Clue, The Last Unicorn, Nightmare Before Christmas etc. Even if I’m not really paying attention, it’s on-screen. I don’t tend to watch new programs very often, even though I have a lot of time in which to consume new media. I’m literally in bed all day, with nothing better to do. I could be watching all kinds of new things. But no. It’s David Attenborough.

My friends expressed concern over this habit, not as a criticism of my lifestyle so much as concerned that one day I will feel like I’ve wasted what time I had. Sometimes I think about that, but overall I’m really not worried about it. I’m doing exactly what I feel like doing. I did, however, talk to my therapist about it, about how I kind of feel like at least I should be watching something different. But the usual shows are just so comfortable. He told me it’s because they’re safe; I know what’s going to happen, there are no nasty surprises waiting for me in it. My real life is complicated enough and I just want to give my brain a break.

My therapist is an extremely clever man.

He’s absolutely right – that’s exactly what it is. I have a real hard time reading any new books or watching any new television because I don’t know what’s going happen. I’m nervous that this new media is somehow going to somehow betray me. It might seem a little bit ridiculous, but due to the way that my brain is wired, new media is very much like meeting someone new. Wholly unpredictable and it feels unsafe. If someone introduces me, I have some kind of endorsements and some kind of assurance that things aren’t going to go sideways, but usually I hang out with the ones I already know because I can relax.

The other day I got brave and binged the entirety of Fleabag.

This was a very bold decision on my part, a little reckless. I’d seen some clips though, and a lot of people told me it’s hilarious, and it’s won a lot of awards. So I watched all of it.

I genuinely regret watching the show.

It’s a black comedy. It is brilliant, the writing is amazing, the actors are wonderful and it absolutely deserves all the praise and awards. And it is ABSOLUTELY not for me. There are genuinely hilarious moments in it, but for the most part it’s just watching this woman’s life become a complete train wreck. Every time she gets a little bit of a break something knocks her three steps back. She’s kind of a toxic person so she digs her own holes, but most of the people in her life are also just genuinely horrible people who say and do terrible things to her. Because I’m an optimist, I kept watching and expecting things to turn around for her. But no. The show ends in a complete heartbreak. And it completely destroyed me.

I was up watching until 5:30am and I was up until 9am crying like the heartbreak was my own. And for the entire next day I was in a really deep melancholy. Because of all of this I have a renewed dedication to watching the same shows over and over and over. I’m safe there. That sucked. My life is indeed entirely too dramatic already. The only drama I need to add to it is whether or not that cheetah catches up to the zebra.

I may be wasting my life away, but I’m comfortable. And I’m perfectly okay with that. Boring is sometimes the best thing in the world. Some people need to spend the rest of their time climbing mountains and composing operas, and I’m just not like that. I chose to work for as long as I could, and I will happily spend the rest of my time playing video games and eating junk food and petting my cats and learning about cool creatures.

Programs about arthropods are my favorite.

Inappropriate Friends are the Best Friends – Part 7

…Why is it most of these stories are about Jack?

Anyway, we’re chatting about VR rigs, like ya do, and I mention my mom can’t use them because she’s legally blind. He asked how that happened, like, did she stare at the sun or something (because Jack is Like That).

“It’s age related,” I told him. “Hehe it’s literally called Age Related Macular Degeneration.”

“Ugh I hope I don’t get that. I get feebles floating in my eye and that’s bad enough.”

“Yeah. It’s genetic, too, so I’m dodging THAT bullet! Hooray!”

“Though points in your mom’s favor, she’s not likely to see Death coming unless he’s trying to do a sneaky and flank her.”

Grief is an Animal

It’s a panther that pounces from the dark places, claws raking across your body, physical pain created from shadow. You’re suddenly on the ground, mind screaming, emotional wounds fresh and bloody. It feels like it came out of nowhere.

It’s a python, winding around you and taking your breath away. You feel like you’ll never breathe again. How did you manage to do it, before?

It’s a chameleon that changes its color, surprising you by seemingly showing up out of the blue. It’s always been there, just blended in. You only just realized it’s been there all day.

It’s a peacock, demanding attention with large displays and raucous calling. Notice me. You can’t help it. There is nothing in your life so important as this feeling.

It’s a spider on the wall, offering you a choice. Do you get up and kill it? Do you pretend it’s not there? Or do you gently scoop it up, carry it a moment, and set it down somewhere safer?

It’s a parasite, eating you from the inside, until you’re a malnourished shadow of your former self. You don’t notice its gradual effects, but your friends notice. To them it’s obvious.

It’s a mosquito, annoying and just out of swatting distance. It leaves a hundred tiny wounds, and they all itch. Sometimes, it’s satisfying to just scratch and scratch and scratch.

It’s a seeing eye dog, guiding you through your transition into a new life and showing you how important small moments are. A small bump to remind you not to go to the restaurant you had your first date in, don’t drive through the intersection where the accident happened, don’t listen to That Song. Not yet.

It’s a pigeon, showing up absolutely everywhere, making a total mess, and discouraged from existing at every turn. But sometimes. Sometimes? It’s nice to sit in the park and feed it for a little while anyway.

Eventually, it’s a fish in a tank – familiar and part of the background of your life, but occasionally you’ll notice a movement and turn your attention there. It’s no longer a panther, just a little colorful part of you, beautiful in its own way.

And always. Always. It’s the elephant in the room no one talks about.

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.