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.

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.










Tick Tock

One month as of tomorrow.

Four weeks and five days.

Twenty three working days.

If the cube move happens on schedule, which I doubt, ten more in-office days.

And then two weeks of paid vacation.

And then?

The rest of my abbreviated life, I suppose. The real work begins to find the home I’m going to die in, to make it a place I can live in until that happens, and then finally – FINALLY – my immediate life can be all about just dealing with my symptoms as they come. To deal with my abilities as they go. To actually live the rest of my life until I’ve had enough.

Some not-insignificant part of me is grateful to have an Out of the workforce. It’s a forced retirement, but it’s an escape from the 9-5 capitalist bullshit that has eaten the prime years of my life. The prime of yours, too. I’ve always been a damn Liberal, but more than ever, I am seeing the absolute stupidity of the 40 hour workweek. The need to work, to justify your living with a paycheck.

And it IS a justification.

I’ve seen sneers turn into surprised respect when I tell people what I do for a living. Yeah fucker, this weird-haired, pierced and tattooed bitch has a real life respectable job that requires actual smarts. I earn more money than you, asshole, surprise.

And with the surrender of my employment comes a surrender of that piece of me, that legitimacy in the eyes of strangers that should mean fuck all and yet…it does. It really does. I wish it didn’t. I know it doesn’t mean anything, not really, but our fucking capitalist society has keyed so much of our identities into our paychecks – and who provides that paycheck – that it is going to be really hard to let that go. From being respectable to being a goddamned leech on our social security system even though I HAVE PAID INTO IT MY WHOLE WORKING LIFE, YOU ASSHOLES, I DESERVE THIS BECAUSE I PAID FOR IT AND IT IS MINE. I paid to let your grandma afford her groceries, would have paid more, gladly, as I earned more, to share what I have. That’s what social security is FOR. That’s why we have it. And yet now that it’s time to cash in, even though it will be a very limited time, I feel less than deserving. Am made by much rhetoric and many conservative motherfuckers to feel like I deserve nothing.

Believe me, fuckers, I’d rather be working instead of dying.

One more month of being valid.

Four weeks plus five days plus two weeks vacation.

One more month of being a job instead of a person.

Six weeks of being justified in my existence.

This is such unbelievable bullshit.










Dream a Little Dream of What Now?

Now that ALS has started to incorporate itself into my subconscious, more and more of my symptoms and new realities have started showing up in my dreams. I can usually still walk. My hands usually still work. ALS isn’t tied into my subconscious self on a permanent basis, yet; it hasn’t become fundamentally part of who I am in my dreams. But occasionally ALS will tiptoe into my dreams and I’ll be in a wheelchair, or I’ll have that dream where you’re trying to run but can’t, but it’s not panic inducing because …of course I can’t.

My current reality with Radicava has apparently assimilated itself into my subconscious as well. In real life, I have a port which is attached to a tube that snakes its way into my arteries. Once a month a nurse comes, and stabs a bent needle through my skin into that port, from which an IV line can be run. We attach medication to that IV line, and thus my infusions are done. Gravity plays a hefty part in this role and the flow can go both ways; we found out the hard way that if there is not medication running into the line, then blood can run out. There has been a couple of times that we’ve been a little delayed in cutting off the flow at the end of the infusion while unhooking the bag, and dark arterial blood starts running up the line. Blood is *supposed* to be able to travel up the line, it’s one of the things they look for when they first access the ports, to know that there is good flow. That’s probably because the first couple of times I’ve accidentally bled into the line he freaked out a little bit. Now we are super casual about it, because it’s honestly no big deal. We just have to push a little saline down the line to get my blood back in my body, and throw that line into the biohazard ban instead of the trash. NBD.

…It is still a little unnerving to know that if I really wasn’t paying attention and things went wrong, when the port is accessed, I could just…bleed out.

I guess my subconscious thought so too. Last night I dreamed that J was helping me with the infusion while we were in some hotel, and somehow the IV bag came off and we didn’t notice. The end of the line just spilled out into nothingness, and I had bled out over a pint before either of us noticed. In my dream J instantly went into panic mode, and started furiously trying to clean up the blood once we clamped off the line, while I assured him that a pint of blood is practically nothing, and people donated this much all the time, and I was fine. I conceded that cleanup was definitely in order, the place looked like a murder scene a little, though. I was more worried about explaining blood stains in the carpet to the people that actually owned the place.

And then the cop showed up.

Suddenly in my dream I’m explaining to a very nervous and suspicious policeman about ALS, and what it is, and what the infusions are all about, and how this was a medical mishap and is not an attempted murder, actually, despite what it looks like, while J is furiously scrubbing blood out of the carpet. I think in the end I convinced the cop that everything was okay, but J was still panicking and worried that he was going to get arrested for trying to murder me.

So yeah, apparently Radicava is normal enough to me now that it’s showing up in my subconscious dreams. That’s a new one.










Biding Time

I have about 9 weeks of work left (7 weeks of actual work and then 2 weeks vacation). Until that time is over, I can’t exactly be as candid about work as I’d like in certain situations, and be public and honest about all the reasons I’m very, very, very glad to be leaving. Dumbass CEOs firing 10% of the global workforce to please the shareholders, lecturing his employees about business ethics and integrity after getting busted doing insider trading, and THEN getting caught having an affair with an underling aside. (Bye, Felicia)

I can tell you, though, that I’m really, really glad to be leaving my particular job. I’ll miss the idea of work, the regularity, the sense of being needed, and a lot of the coworkers that I’m leaving behind, but I’m very glad that an end is in sight to my working career. Frankly, the job’s become kind of a piece of shit lately and the universe is telling me it’s time to be gone.

Perfect case in point, my manager asked what I would like to do as a goodbye celebration. I told him I wasn’t sure I even wanted to HAVE one, since I’m not exactly leaving for very happy reasons, and I really don’t want to be around a bunch of people crying or looking at me with pity for a couple hours, or talking about literally anything else. Not my idea of a good time. I kind of just… want to sneak out the back. Coworkers that I had personal attachments to had their chance last year to say goodbye at my wake. He said that was fine, but I should know there were lots of people who wanted a chance to say goodbye after almost ten years of working with me, and if I did not want to a going away thing, then that was my choice, but I needed to let him know so that he could inform me coworkers in Arizona that if they want to say goodbye they would have to make their own arrangements.

I flat out told him that was emotional blackmail. But I conceded that a going away thing wasn’t about me at all and I would think about it. He told me to pick a time and a place and let him know when I’d made arrangements.

…The FUCK I am going to plan my own going away party.

It’s already shitty that for almost the last 10 years, I’ve been performing the team’s emotional labor on my own (practically. James was really good at picking up some of it and made a point of not treating me like a fucking admin, while he was on our team). I am not going to plan, organize, and make reservations for a party – for MYSELF – that I don’t even want. I’ve been sending flowers for every, birth, wedding, and death in my team. I got nothing when my father died. …because I wasn’t there to send *myself* flowers.

It’s definitely time to go. If I weren’t leaving the team, the company, the workforce as a whole, I’d sure as shit be leaving this particular team anyway. Probably the company. We ceased giving a shit about each other a long time ago. That really sucks, because I miss the team we used to be. The team that hung out after work together for Beer Tuesdays and invited me even though I think beer is gross. The team that genuinely gave a shit about each other and had fun even when the work itself sucked so much ass. I miss that camaraderie.

The old team sure as fuck would not have told me to throw my own goddamned retirement party.










The ALS Clinic

My ALS Clinic team is getting a new doctor. Dr. Goslin called me and said they were putting together a newsletter to welcome him, and asked if I would write something about my experiences with the clinic. “Hopefully positive,” she said, and she needn’t have worried. I told her I’d be delighted. This is what I wrote.

It is not hyperbolic to state that ALS is one of the worst things that can happen to someone. Second perhaps only to Alzheimer’s disease in the completely undignified and terrifying way it kills, a diagnosis of ALS is absolutely devastating. It is also not hyperbolic to state that one of the best weapons against the ravages of this disease is the multidisciplinary ALS clinic. I personally cannot imagine going through this disease without my care team. A dedicated team of experts coming together to get the big picture and provide not only treatment, but expectations and support, is a luxury very few people are ever gifted with.

The ALS clinic makes the journey not only better, but perhaps even possible at all. Scheduling so many appointments with so many separate providers would become a job in itself; a Herculean task when one is already exhausted from just continuing to be alive. One day every three months for a four hour whirlwind tour of health is a tremendous relief of burden, even without considering the travel times. In addition to the vast benefit of freed time and effort, the end-of-day consultation when the whole team comes together to talk about me as a whole and complete person, instead of a series of interesting little snippets, provides for a much better plan of attack. A completely holistic and complete picture of me as a person with ALS, instead of a case file of how ALS is affecting Patient X with regards to diet/respiratory/insert-your-favorite-discipline-here. It is so much better for the patient when doctors talk to each other – who knew?

ALS affects each person differently, and we collectively know so little about it that research on one’s own is almost pointless. It’s only through the collective care and knowledge of the team at Providence that I’ve been able to get a grasp on my disease at all. Every question I ask is answered, every minor complaint met with compassion and understanding, and above it all, the concern I’m given is genuine. I’ve never had such a beautiful working relationship with medical professionals before. The care and compassion of this clinic’s providers are one of the greatest tools a person with ALS could ever hope to have; a wonderful consolation prize.

If ALS is a Pandora’s box of symptoms and troubles, then the ALS clinic is the remaining hope. I’m wholly grateful for this resource. I literally could not do this without it.










Brutal Honesty

Spoiler alert: I don’t really like children. I’ve never wanted them, I don’t generally like being around them, they are messy and loud and completely irrational and they trigger my social anxiety like woah.

Disclaimer aside: I fucking love how brutally honest and open children are.

They can, as Fred Rogers said, spot a phony a mile away, and they will call it exactly as they see it. And a quality I’ve come to adore: they will ask questions. Adults will stare and make a point of NOT staring, and talk about anything BUT what they want to ask, and dodge the subject so thoroughly you’d think it was a game everyone is playing but you. Don’t Mention the Wheelchair, the worst party game ever.

But kids? Kids will come out and ask and feel no shame, and it’s refreshing as hell.

We went to dinner tonight, at a place with a LOOOOOOT of stairs. There’s a secret elevator entrance way in the back, but you have to have a host/hostess escort you because it’s seriously a maze and you have to go through a business building’s security desk. So tonight, when J wheeled me to the front counter to await seating, it was understandably baffling to a little girl how someone in a wheelchair was going to get up all the stairs she’d had to navigate to get in.

She couldn’t have been older than four. Adorable little thing in sparkly shoes and pigtails, and she turned to her mother when she saw me rolling up. Asking in that louder-than-normal-voice-whisper that kids have, she asked, “How’s she gonna get up here?”

To her credit, her mom was unembarrassed and handled the question honestly. “She’s not.”

“There’s a back way,” I told her.

The girl asked her mom, “Why’s she in the chair?”

“I don’t know,” her mom answered. To my delight, she did NOT try to hush the child up or make a big deal about it. When parents try to silence their kids’ questions, it feels like I’m some sort of shameful thing that has to be swept under the carpet. And hey guess what, when you skirt the issue? You pique the kid’s interest. Oh I’m NOT supposed to talk about this? GUESS WHAT WILL BE OUR TOPIC OF CHOICE TONIGHT. I *can’t* say those words? Well then BUTTS BUTTS BUTTS FART DOODY oh hi Grandma! Today I learned FARTS!

The child then, sensibly, turned to me. “Why are you in that chair?”

“My legs don’t work,” I told her honestly.

“How come your legs don’t work?”

“I have a disease. It makes them very weak. I’m not very strong anymore.”

“Oh.” She considered this new information, and then very logically continued, “well *I* am.”

“I can see that! You look very, very strong.”

And she flexed her little arms for me, beyond proud.

And that was the end of that. We shifted the topic to her shoes, which were very sparkly and lit up when she stomped, and she danced her own little disco until our table was ready and I was wheeled away. Hopefully, she will retain that honesty and people in wheelchairs will remain something normal, to have frank discussions about, and hopefully her parents continue to raise her well and when the answer is “I don’t want to tell you why I’m in this chair” or “It’s private why I only have one eye”, both parties deal with it with grace.

I see it as a continuation of all the conversations I’ve had with children, “Why is there earrings in your nose” or “how come you got purple hair” or “why did you draw all over your skin forever”. I enjoy those conversations because of their complete lack of judgement, their total curiosity. Not, “ewww you are weird and that’s bad” just “why are you different?” It’s an honest, open conversation and the world needs more of that.

So that’s the story of a completely charming child I spoke to last Sunday.










Welllp

Good thing we’re gonna go ahead and do the port; when the dressing was swapped out Thursday, my skin was all KINDS of pissed off. I was pretty sure I was having at least a mild reaction to the adhesive, because surely it shouldn’t be THAT itchy? Apparently no. It should not.

Soo we are trying a different adhesive that doesn’t adhere as well, I’m finding, and we will hopefully get the port installed soon.










A Humble Request

I’d like to formally ask all of you guys to do something that you really ought to be doing anyway:

When you wash your hands, and splash water on the counter, wipe it up.

Again, you should be doing this anyway. But I ask this of you, because I can’t support my own weight on my own two feet anymore, so I have to lean against the counter to turn the faucet on to wash my hands, so I get a big wet line across my gut. And my hands don’t work very well, so I usually have to lean on my elbows to get them under the water and rub them together to soap up, so now I’m also wet to the elbows.

Just, dry your hands, then run that towel across the counter before you throw it away. I promise it’s not hard. I’ve always done it, when my body worked like yours does, so I know it’s possible.

Thanks, darlings.










Sometimes It Goes Right.

I want to tell you a happy story, but it involves a little bit of angst, but first there is a happy thing, and it has a happy ending, okay?

OK. I thiiiiiink I’ve told you about this before, but shortly after I was diagnosed, my friend Nate gifted me with a subscription to Loot Crate. It’s a monthly subscription box full of geeky fun things, and it’s a delight to receive every month. I ADORE surprises in the mail, and it’s been a bright spot once a month, and Nate is an amazing person for doing this for me. I always love seeing what awesome things they’ve come up with. Sometimes it comes with a shirt, I once got a glow in the dark Tron pencil case (cough cough makeup bag), a plushie facehugger from Alien, a kickass bank in the shape of Hellboy’s fist, the list goes on.

There’s a point to this beside Nathan is OSSEM and I love geek things, I swear.

I was so enamored of the stuff, that when Loot Crate upped their game and offered a wearables-only subscription, I was all over it. A shirt and TWO! TWO PAIRS! of socks every month (OH MY GOD I LOVE SOME SOCKS YOU GUYS) (no really you have no idea) (seriously two drawers overflowing) and it was a done freaking deal. This month I got a pair of Nightmare Before Christmas socks (squee!), a pair of Walkign Dead socks with weapons screenprinted all over them (hee hee hee) and a baseball jersey style shirt emblazoned with the logo for Weland Yutani, the company from the Alien movies. It’s RAD.

I went to see Dylan Moran on Sunday – he’s an Irish comedian who’s been in a lot of things I love (Shaun of the Dead, Black Books), and I decided to wear the jersey. And here is where things get sad. Apparently I was having a really low mana day, I don’t know why, but when I let go of the walker to climb in to the car, I fell. Not a dramatic OHMYGODWEAREGOINGDOWN but just a ‘welp, gravity is a true theory and we all must obey’ kind of slide to the ground. The corner of the car door caught me under my arm and I grasped at it to avoid going down hard, and I heard this awful rip. It was almost comical for a minute; I knew I had to let go of the door, because I couldn’t recover from the fall, but I could hear the ripping get worse and I was inwardly cringing.

Puce was a freaking champion of champions, he was by my side in a flash and had lifted me to my feet before I quite knew what was happening. He hugged me tight and said it was okay, we were still going to go out and have the BEST NIGHT EVER, and helped me back into my apartment so I could change my shirt. I hadn’t even had the effing thing on for an HOUR. I did a pretty good job of not losing my shit. He said maybe Loot Crate would replace it. I said I hoped, but didn’t think so, because it’s not like it’s Loot Crate’s fault I have ALS and fell and ripped my shirt.

I sent them an email that night anyway. Maybe I could buy a new one? They sometimes sell their crates, later, but even though I didn’t need a whole new set, maybe they had a spare shirt I could pay for. It was worth a shot. I sent them this email and photo:

SUBJECT: A Tale of Woe-land Yutani

TL:DR at the bottom. <3 Ok so I had tickets tonight to see Dylan Moran (he's awesome, go see his show if you can), and busted out my brand new Weyland Yutani shirt for its inaugural outing. I headed out to the car, and..well ok, I have ALS (Lou Gehrig's Disease) and my legs don't work well anymore, and as I was getting in to the vehicle they said EFF YOU and I fell. I flailed around for something to catch myself on, and instead the car door caught the shirt as I went down and it ripped. Really badly. Luckily it kiiiinda slowed my fall so I wasn't hurt, yay~! But my brand new jersey I hadn't even had on for an HOUR is now ruined. TL:DR; is there a way I can buy a replacement JUST for the shirt and not have to hope you guys sell this crate later? Even if you can't, thanks for being awesome. -Vashti

let 'er rrrrrrrrrrrrrrrrrrrrrrrrrrrip

The next day I got a reply:

Hi Vashti!

I’m sorry to hear of your woes! As a one-time courtesy for being a loyal Looter and providing a photo of not only the torn shirt but including your kitty as well, I will get a replacement out to you. Due to inventory changes at our warehouse, we ask that you allow up to 10 days for your replacement to ship. Once it has been processed, you will receive an email with new tracking information.

We would like to apologize again for the late delivery of this item. Thank you for your patience and understanding!
Thanks!

Keith ^_^ – Team Marvel
Loot Crate Help Center – https://lootcrate.zendesk.com/hc/en-us

LOOT CRATE IS AMAZING. Keith is amazing. I am not sure what Team Marvel is, but it would not surprise me if the Loot Crate offices are divided West-Side-Story-Style into Team Marvel and Team DC and instead of fighting in alleys they play with action figures and make “pchew pchew pchew” noises at each other over their cube walls (“Cyclops got you with his eye beam!” “NUH-UH, Wonder Woman deflects it with her bracers!” “Her bracers would not be able to deflect his eye beams unless they were made of ruby quartz!” “SHUT UP NO ONE EVEN LIKES CYCLOPS HE IS LAME.” “YOUR MOM is lame!” “Craig do we have to go to HR again?” “….No. But Batman would kick Cyclops’ ass any day. He is like the Aquaman of the X-Men.” “GODDAMMIT CRAIG THAT IS IT.”), and have heated arguments in IRC over who is better, Deadpool or Lobo.

……I digress. But! Thanks to Keith, and apparently to Parmesan being a butt and refusing to let me take a picture without him walking all over everything IN THE WORLD, I have a new shirt coming. SO that is excellent. ALS can’t ruin everything when there are awesome people in the world like Nathan and Keith. My world is an awesome place with fabulous people in it.

…Deadpool would totally kick Lobo’s ass, btw. This is a fact.










Pikachu used ABLEISM! It’s SUPER EFFECTIVE!

A conversation I’ve had a couple of times:

“Are you playing Pokemon Go?”

“No.”

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

“Because it’s a WALKING game.”

“….Oh. Right.”

“Dick.”

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










Meat Shells are Terribly Inconvenient.

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

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

Fear nothing.”

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

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

So the original post, by user MIckeyrowan was this:

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

And the internet responded:

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

vincentvangozer:
blood.dll has caused an access violation exception

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

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

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

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

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

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

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

and probably my favorite:

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

and the followup gospel truth:

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










Oh also!

So when I walked in to pay for the bed yesterday, I felt a little bad for the saleskid, cause he saw a potential commission, and I was there to pay for something already sold. Sad trombone.

“Hi there,” he said.

“Good morning,” my brother Justin said. It was about 6PM.

The kid was a bit flustered but recovered quickly. “How can I help?”

I pointed at the sales counter. “I’m actually just here to..”

Saleskid dropped the mask. “Your hair is really cool.”

“Thanks!”

He noticed my Deadpool teeshirt. “Your SHIRT is cool!”

“Thanks again!”

“Sorry, were you headed to the bathroom?” It was the same direction as the counter.

“No, I’m here to pay for a bed. My friend Jen set it up for me.”

Of course he knew her. She’s awesome. I told him my name. “Even your NAME is really cool.”

“I’m not sure if you noticed, but um, I’m pretty cool all around,” I grinned. We joked about the little plushy dust mite on the counter, he rang me up, Justin and I got donuts on the way home. And today I figured out that Jen had saved me $2400.

TWO THOUSAND FOUR HUNDRED DOLLARS.

Jen is cool. You guys are cool.

The end.










My subconscious is a bitch.

I think I’ve said it here before, but my dreams are weird. Not like normal people weird, and I realize that everyone thinks their dreams are weird. I’m talking very strange but vivid dreams that I remember perfectly; I can draw you maps of places I’ve been only once in a dream, and they are chock full of what the actual HELL. My dream life is very active and usually awesome.

And my dream self is a snarky bitch, sometimes.

In my dream last night, my attempts to take a nap were repeatedly thwarted, by random children deciding they wanted to cuddle with me (what the hell, dream children, I do not like you), or trying to figure out where all the kittens were, or a jerk guy coming in to play Super Mario Brothers on the television next to my bed. I gave up and went to the other room to sleep, my grandfather’s room in a house that no longer exists, and my older brother Gecko followed me in there to tuck me in. He asked me a question, and when I replied I kind of stumbled over the words, like a stutter.

Gecko being Gecko, he immediately made fun of me and repeated my babble.

“What are you going to do if it turns out that’s the first time ALS has affected my speech,” I asked him. “You’re gonna feel like such an asshole.”

And he looked aghast for a second, and then realized I was just being a bitch and flipped me off. I woke myself up laughing.










LOLitics

A coworker is at the entrance of my cube, talking to me about politics. I hate politics, I don’t want to talk about it, I don’t want to think about it, and try to avoid them at all costs. I don’t watch the news, I don’t read news sites, I actively do not pay attention to any of that. I get more than enough from my facebook feed, thanks, and I have a policy even there of, “if your last five posts were all political, welcome to the Ignore List.”

Willful ignorance for the win, I guess? There’s that saying, “if you’re not outraged, you’re not paying attention” and it’s true, but some of us have better things to do than be outraged all the damn time. I certainly have OPINIONS about a lot of things, don’t get me wrong, but seriously shut up. You’re not saving the world with your opinions on gun control or abortion or whatever the flavor of the month at 31 Outrages is. Terrible Situation is Terrible, but sitting in your office writing vitriolic screeds and stressing about it without DOING anything about it solves NOTHING.

Ranting in your facebook does one of two things: Alienate People Who Don’t Agree With You, or Preach To The Choir. You’re not changing anyone’s minds or calling anyone to action. You’re just yelling about TERRIBLE THING with no specific call to action and no change as result, and it is actively depressing/infuriating/frustrating to read this over and over and over. I don’t give a SHIT about an article about a protest or a war or a new policy or whatever, facebook is where I go to find out how the fuck you are doing. Where you AT the protest where the cops tear-gassed the protesters? No? Then WHY ARE YOU POSTING THIS. Are you seriously expecting to sway someone’s vote with your clever little infographic about gun control? Seriously? HAHAHAHAHAHHAAHAHHAHAHAHA oh man. That’s a good one. Ok but really you know you’re not, right? And you DID run that article through Snopes or FactCheck or PolitiFact or Hoax-Slayer or something before posting it, right? And not just shared it because it agreed with you before making sure it was true? No? Sigh. Okay. Yeah. This is why we can’t have nice things, people. Check your facts or better yet, just don’t post that. Post pictures of your cats. That’s important. That actually tells me about your life. I want to know how your breakfast was, not about some philandering politician or your stance on abortion or some insipid inspirational wabbajabba picture of a sunset with a misattributed quote.

I don’t give a shit about your politics, I often like you in SPITE of them.

There was a point to this. …Where was I.

Oh right. Coworker. Cube. He’s talking about the Republican party and the possibility of Trump as president and blah blah blah, and I find myself cheerfully saying, “You know sometimes, I’m GRATEFUL that I’m checking out early so I don’t have to DEAL with this shit.”

And he gets quiet.

And that is the end of THAT conversation.

I win.










Merry Christmas and all that

Sorry again for radio silence. It’s not like things haven’t been happening in VashtiLand, it’s just nothing really to do with ALS so much. It’s been normal. The new normal, not normal. Notmal. Born of a typo, I am adopting that word forever.

Last week I went to California to visit my mom for Christmas (surprise, mom!) and reconnected with an old friend, and got some awesome presents and made a fruitcake. That’s the TL:DR version.

First off, I want it clearly on the record that my little brother is out of his mind. Those that know him will not meet that statement with surprise. Nor is it the first time I’ve ever said those words, in that order. We drove down to Cali in a rental car, because it is much easier and cheaper to haul five people in a car than on a plane, especially when one of them is an infant and one of them is five. My little brother drives a tow truck on the night shift, he loves to drive – seriously loves it – and loves to drive at night, sepecially; he adores the quiet when there’s no one on the road. That’s not why he’s crazy. No. He is crazy because he did a full shift of towing, got off work at midnight, and then decided that NOW IS THE TIME THAT WE DRIVE TEN HOURS TO CALIFORNIA.

Out of his tiny little brain.

So despite concerns about driving tired and insisting that he was fine and promising on the souls of his children that he would pull over if he got tired, we piled into the car (literally; my poor sister in law was coccooned in the back seat with a toddler in his car seat, a baby in her baby seat, and blankets and pillows) and started the drive. We got fast food for the road, talked a little, and he drove, until we needed to pee or feed the baby or change the baby. With him complaining the whole time about this is why he likes to drive at night, you don’t have to stop for pee breaks when everyone’s just sleeping. It’s weird for me to sleep in the car – for ten years I was with a dude who needed a copilot to keep him awake when he drove long distances, like a NORMAL person, so road trips have always equaled THERE WILL BE NO SLEEPING. On this trip I was expected, encouraged to, and that was weird. It was nice though, I will always prefer traveling by car because it’s just SO MUCH LESS HASSLE. No security checks and long lines and fussing about where is the disabled entrance, just the occasionally dodgy public bathroom. And little brother annoyed that we have to stop, AGAIN, because it didn’t occur to his wife to breastfeed when we stopped for potty breaks.

THE NERVE OF THAT WOMAN AMIRITE.

We got to the hotel around noon, napped, got some In N’ Out for dinner, went out to see some friends, looked at lights, came back to the hotel, and settled down for a proper sleep. Which of course meant things had to go wrong. And by wrong, I mean someone hitting a transformer at 3:30AM and knocking out the power grid which triggers the hotel’s fire alarm. And by wrong, I mean the hotel’s emergency lights also do not work for some reason. None of which I knew, of course, just OH MY GOD EMERGENCY NO LIGHTS GET OUT GET OUT GET OUT!!! Cue me, woken out of a dead sleep in a strange hotel room with no clothes on, in complete darkness except for a flashing strobe light and an alarm so loud it is literally impossible to think. They put me in an accessible room (yay awesome hotel manager!), close to the exit, but first I had to get some clothes on, which meant stumbling around in complete darkness punctuated by blinding flashes with the most piercing, annoying screaming in my ears the whole time. I wound up outside barefoot in 34 degrees, in jeans and a backwards tank top, sweatshirt and boots in hand, hobbling through gravel to find a place to sit and put my boots and braces on by a blissfully near-full moon. I found the rest of my family, in the car keeping warm, and we sat in the parking lot, watching the pattern of flashing lights in the three story hotel (which were kinda cool looking from a safe, sane distance), my five year old nephew freaking out because he’s scared as hell and hates loud noises, my brother telling me how he went to check for me and didn’t know if I was still in the room and had fallen down or something so he was relieved that I was okay, and he is MUCH cleverer than I am, because he flipped the safety lock on his door so it didn’t shut all the way. Which meant that, unlike me, he could get back in to his room when the power came back because I’d left my wallet and phone and everything in the world in my room except pants, shirt, sweatshirt, boots, and cane. The fire department came and checked everything out, the power came back on while they were inside, we were all let inside when the firemen gave the all-clear, I had the poor night manager (freaking out because everyone was freaking out at HIM like it was his fault personally that this happened, on the phone with the alarm company because why didn’t the emergency lights come on seriously what the hell) let me back in to my room at around 4:15 or so, and got back to sleep at about 4:30.

Which is when the alarm went off again.

Just once, probably because the manager had finally gotten hold of the alarm people and they reset the system. But still. The punch line to all of this is that I’m doing a sleep study program at the moment, and it records audio while I sleep to see if I talk in my sleep, or what kinds of interruptions happen to disturb me (looking at YOU, Parmesan), so I have a recording of myself when the alarm went off. Turns out, when startled out of a dead sleep by a panic inducing noise and light show, I make a startled little “Oh!” sound like a cartoon.

And with that, it was Christmas Eve!

When I woke up after all that, I messaged my Squirrel Buddy Jim. You know, that buddy you have that you can just get together and squirrel around with. Mine is named Jim. I confess I was nervous about the meeting – I hadn’t seen him in person in too many years and I was/am completely self conscious about what the disease has done to me, how that affects people that haven’t seen me in awhile. Hi, last time you saw me I was 50 pounds lighter and didn’t need a cane and could step up on a curb just fine, how you doin? I guess I’m allergic to people feeling sorry for me? More like, it hurts me a lot when my condition hurts someone else. I get sad when I have to tell someone about it, because they get sad. And Jim has been a happy distraction in my life for almost 25 years and the last thing I want is to make him sad because I love him a lot. And he was not disturbed at all, outwardly, and was the perfect mix of casual ‘let me help you with this’ and ‘this is totally normal no big deal’ about it all, and I could cry, I’m so grateful. I should have expected as such from him, but I was still nervous, and I’m so happy I had no reason to be. We hung out like old times, we showed each other awesome things, I met his kids again, since they were wee and just born the last time I saw them, and we ate cookies he’d decorated and ate miracle fruit and tasted sour things and had a marvelous time as always. We talked from our hearts on the 45 minute drive back to my hotel (he lives in the middle of nowhere), and reconnected as always, and everything was normal and good.

And then Christmas was with my family so that was all just weird. Because family. I’m glad the aunts and uncle and cousins drove up to meet with us at my mom’s house, because I don’t know when I’ll get down there again. Traveling in general is getting harder, and soon I won’t be able to travel at all without special accommodations, which will make me less likely to travel at all. I told them all it’s their turn, now, to visit me.

And then we got up and out of the hotel on Saturday and my crazy brother drove us all home. And it was good to be home, and sleep all day Sunday except when blowing up Raiders in Fallout 4 or dodging Parmesan’s icicle feet because oh my GOD he would not leave me alone all day. And it snowed, just a little, and I slept through it, but that’s okay. It was a good Christmas.

I hope yours was grand.










Engineers are mad scientists waiting to happen

The thing about being friends with engineers is that you can no longer off-handedly say things like, “Man, I totally want a little spring loaded boxing glove on my wheelchair so I can push a button and punch people in the crotch when they piss me off.”

Because they would TOTALLY BUILD YOU ONE.

To wit:

Vashti Ross
hahaha it was my plan to be that feisty old biddy who hits people and throws things and gets away with it cause she’s old.
Now I could get away with it because I’m dying but I won’t be able to throw things
sad

Jack Bradach
I’ll build you a cripapult!

Vashti Ross
yoou just made that word up and I can tell from here you are immensely pleased with yourself for it.
good job.

Jack Bradach
I am not surprised you can feel it, USGS is going to be reporting on a smug shit eating grin of unprecedented magnitude.

Vashti Ross
hahahahahaa

Jack Bradach
This will be a thing. Nerf balls that can be computer targeted.

And he could do it, too. I will have to be more careful about saying ridiculous shit to people who are actually capable of making them reality. Even though it would be hilarious.