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.

Dalton Chad Everett

I want to tell you about Chad. I wanted this to be a video update, but I don’t trust my face to stay screwed on properly and my mouth to make the right words, so I present him to you in written format. I hope that’s okay.

I began working at Stream in 1998. It was two months after I’d left my entire world and moved sight unseen to Portland. The prejudice against Californians turned out to be a real thing and not even Dairy Queen called me back, but a temp agency hired me at last, to work a call center doing tech support. It was $10.58 an hour, more than I’d ever earned before. I was excited. Excited to be employed, and to be among some of My People – Stream didn’t have a dress code, really, only that you hopefully didn’t wear offensive shirts and your clothes weren’t full of holes. Bathing seemed to be optional for some of them, but that is beside my point. Being allowed to wear what you wanted, to be who you were offline at work, too, provided you could pretend to be an adult on the phone? That attracts a lot of the Strange, and a lot of the Geeks. I met a lot of amazing people there, some very precious weirdos who I carried with me the rest of my life.

There was this one guy, though. I became peripherally aware of him at some point, always immaculately dressed in a crisply ironed button down shirt, hair perfectly slicked down in a ponytail, and thought to myself, ‘Wow, that dude is trying too hard. This is STREAM.’ I found out he was a manager. Figures.

And then he became MY manager, when I got sick of fixing paper jams and explaining to people why their laser printer was not printing the same color as what they had on their screens. I left laserjet land and moved to the BigTime Software contract where I supported a very popular photo editing program and ..spent my time explaining to people why the color on their prints was not the same as what the program showed on the screen. He was a pretty good manager, it turned out. I found out he was also fluent in Sarcasm, like me, and he had a sense of humor so dry that diaper companies used it to improve their product absorbency. He was that rare breed of manager that can pass down mandates from the Uppers and fully admit that it was complete horsecrap but we had to do it anyway so suck it up. Without pissing you off. He did what was in his limited power to make the job less miserable while still getting work done.

I learned to like him. I learned about his GINORMOUS cat, as he showed me a picture of the beast with his work badge alongside him for scale. I learned about his habit of ironing his shirts in the morning as a moment of peaceful zen before starting his day. I learned that the goofiest things would split his face into a ridiculous grin. And he smiled so easily. He gracefully accepted the teasing of his employees – seriously, when you get a bunch of creative misfits together, stick them on the phones repeating the same things over and over, and then give them all incredibly powerful photo and video editing tools, there is GOING to be mischief, and it is GOING to hit the management. He didn’t care. He thought it was funny. I learned he accepted his own mistakes with a grinning grace. He baffled and then charmed me with a habit of ending conversations with “…So there.” It’s a brilliant way to end conversations that don’t really have an end; you’re just sort of finished talking, and you don’t know quite how to end it so you can leave. Chad figured it out and taught me, and to this day I still end conversations that way, sometimes.

He wasn’t one of the people I took with me when I left Stream, and I couldn’t tell you why. I left him there and he became a memory of a manager. I am fortunate as hell that the Universe didn’t let that stay that way for long. It turned out that one of my dear friends, and someone I DID take with me, dated him on the sly, which I found out years later, and eventually they married. So I was going to keep him anyway, but the connection was made even more permanent as he moved on and became a manager at a company I later applied for (and didn’t get the job). A dear friend moved up here to Oregon and worked under him. The company was near my home, and when I got a job at Intel at last, I would occasionally see him getting dropped off for work, and I would stand around and chat with them for awhile. When he found out I worked for Intel, he was happy for me. “Well I could be working HERE,” I told him, “but you declined to hire me.”

He grinned and flipped me off and his wife laughed.

Every time I saw them, they were laughing and smiling. It automatically brightened my day when our commutes overlapped. Life continued, and I kept in touch through Facebook, and he wrote a book and I was impressed as hell, and vicariously enjoyed their company through their posts and their pictures, always smiling, always laughing. I made promises to myself over and over, I really MUST hang out with them some more, I adore these people.

When I was diagnosed with ALS, they both expressed words of support and offers of help, and I knew they were one of the small handful that actually MEANT it. Everyone meant well, but there were a select few that I knew I could actually rely on if required. Sure, you automatically say, “please call if you need anything”, but would you really be willing to come over twice a week and scoop my cat box when I can’t? They would. They totally would. If I needed to, I could have couch surfed until I was in hospice, they would have done anything to help me, and I was almost terrifyingly overwhelmed with it all. She always had words of empathy and support and love, and he always had a sarcastic joke to lift me up. And I adored them both and thought, we really ought to get together.

On March 5th, his wife Dawni posted: “To our friends and family, yesterday what we thought would be a routine doctor’s visit turned into a little more. … He will be fine, but he needs some extra love and care headed his way.” Those of us who knew Dawni knew damned well that if things truly would be fine, she would not be so vague and pointedly cheerful. “Don’t worry,” she wrote, and we knew to worry. A lot. And slowly the story came out. An emergency surgery had revealed Stage IV cancer. Inoperable. Weeks to live, maybe. And a fundraiser page was raised and everyone turned out in DROVES to help. All of us were stunned, shocked, helpless, angry that such an awful thing was happening to two amazing people. And I watched her, overwhelmed by the love and support, and I watched him smile and joke through it all, and I was granted perspective.

I saw my own situation from the outside. I saw what it was to have no idea what to do with terrible news and helplessly heap love instead. I saw someone ELSE completely overwhelmed with sudden love and support they didn’t know exist. I got to be a part of the uplift instead of the uplifted. I got to experience, too, the frustration of being willing and able to help someone who didn’t know how to ask for help. I came to know the singular frustration it is, to know someone needs things but is so fiercely unwilling to burden someone else with their troubles that they will never ask. And it taught me to let people help me, with better grace. I’m still not there. But I’m learning, and Chad and Dawni taught me.

Dawni threw him a Life Party, which I’ve posted about and STILL think is the best thing ever. Seriously. Do this. It was amazing to see them both, and be able to celebrate his life with him present, and see and hear all of these strangers telling stories about him in a way I never knew him. And because I DID know him a little, I gave him “I’m Dying” cards to play, and he loved them, even if others at the party thought them morbid. He and I thought them hilarious and that’s all that mattered. He and I spoke for awhile, but not long as he was the guest of honor, and he asked how I was doing, and I wanted to say, “Who cares? This is about YOU.” I offered what help I could, with some of the bureaucratic BS that comes with dying as I’d had a year’s head start on him, and we made plans to hang out. Soon. Chad and I vowed to outlive each other. And I left that party, enriched and uplifted and so grateful that both of these people had ever come into my reality and even more graced that they stayed.

When I saw him next, Danielle and I visited them at home. I was hoping to provide him with support as a fellow dying person even though our roads were vastly different. I was hoping Danielle could be support for Dawni as the practically-significant-other primary caretaker of a dying person. Nothing ever got that heavy, because it was Chad and Dawni. We ate dinner, we played card games, we talked about comics and cats, and we laughed a lot. Dawni apologized that the kitchen wasn’t clean, as I prepared us a dessert, and that frustration kinda reared up again – “woman, we are HERE, we are ABLE, LET US DO SOME DAMNED DISHES FOR YOU.” But I shut it down, for all of the hundred times someone has offered to help me and I wasn’t able to ask them, “Yes, can you take the garbage to the curb for me? It’s too heavy.” And I marveled at that mindset from the outside, and gained a new appreciation for how frustrating it can be for other people, and I became humble and shut my mouth. And made delicious syllabub. When we talked about the heavy things, it was with a defiant levity – gallows humor is strong in all four of us. I found that I didn’t have to explicitly offer support for him, and neither did he, for me. We both knew what the other faced, and in silence we shared it and in laughter we beat it down.

As Danielle and I left, Chad and I both promised each other another 30 birthdays. And we both knew we were lying.

Things progressed at a much faster pace for Chad than I, and in October, things became more urgent, and I made good on my promise to visit again. I was aware peripherally of the procedures and whatnot from Facebook, but I was able to get an unfettered view into things from the two of them in person. Call it the privilege of being in The Dying Club. I knew something about it all, so I was allowed to know more than others because I could understand it like no one else could. I use the word privilege sincerely here – I am truly glad I was trusted with information because I could handle it. Because I knew. It was a much quieter visit, with Chad drifting in and out of sleep, but the conversation was still full of laughter and comics and cats. He asked sincerely how I was doing, and again, I wanted to counter, “WHO CARES? THIS IS ABOUT YOU.” He never let it be about him. Even at his worst, he wanted to know how I was doing. And we talked frankly about timelines and outcomes, and when I left we bumped fists and swore another 30 birthdays. And we both knew we were lying.

In early November, Chad declined enough to need hospice visits at home, and on the 16th of November, they moved him into hospice care to wait the end. We all held our breaths, and shared stories on his facebook community page, and laughed and wept and waited. We talked fondly of him, continued to support his wife the best we could, and be grateful to the people who kept us informed, the outer circles to Chad’s center. We pushed support in, we encouraged dumping out, and we waited. We were told he had hours left. We offered love and support, and we waited.

He passed quietly the night of November 21st.

That night, the world lost a hell of a sense of humor, a wry wit, and an infectious grin. Dawni lost her best friend and her true love and her partner. Her parents lost a son. Many lost a friend. I lost a primal and important connection to my terminal disease. I lost another perspective from the other side, and a new perspective from the same side. I lost a touchstone, a sanity check, an explicit permission to think this is all as funny as I think it is, sometimes.

I lost a brother in darkness.

Chad’s struggle is done, now, and we’re all relieved. It was a hard fight, and impossible odds, and we miss him to pieces. We still rail against the universe for its unfairness – why him? Why her? Why wring the joy out of such an amazingly effervescent soul? Why make it so hard? There are no answers for him. There are none for me. It just is, and all I can do is be grateful I was allowed to know him for a while, and share his joy, and be contaminated by his refusal to stop smiling, ever. His big, dumb, goofy grin. Seriously, it was ridiculous.

He was amazing. And I thought you should know about him.

So there.

Lalochezia

There’s something magical about swearing.

Lalochezia means relieving stress or pain through swearing. La-Lo-KEE-Zee-Uh. It derives from the Greek words for ‘speech’ (lalia) and defecation (chezo). It is literally Greek for ‘talking shit’. That, too, is magical.

If you’ve been paying attention, you know it’s not just a word, it’s a way of life for me. There are times that swearing IS appropriate, thank you. I’ve always used it to promote catharsis and relief when angry, sad, or stressed out. I swear casually too, but I wish I didn’t. My casual swearing isn’t nearly as profane as my lalocheziac screeds, but I would prefer to keep the swearing to important times. Overuse of the words diminish their power – a mouthbreathing stoner kid using the word ‘fuck’ doesn’t have nearly the same punch as say, a priest using it.

I’m sure you’ve known the relief. That day everything went wrong, your alarm didn’t go off, you missed the bus, you were late to work, the coffee was cold, you realized halfway through the day your underwear was on backwards, the printer jammed, they were out of your favorite thing in the vending machines, your boss griped at you for something out of your control, it suddenly started raining when you left work and you weren’t dressed for it; just, a thousand and one small insults piled up on top of each other all day. And then you got home, kicked off your shoes, grateful to be home and safe, and banged your toe on the couch which made you drop your mail all over the floor. All of the microfrustrations of the day exploded out of you in one vocal outburst.

I bet you didn’t say “darn it”.

There are times when it just isn’t enough to say, “she wasn’t very nice”. “Mannnn, FUCK her.” It doesn’t convey enough of your frustration with the problem to tell someone, “I couldn’t get the door open to get the cat out of the room before he barfed on the carpet”, but it works perfectly when you tell them, “I couldn’t get the fucking door open in time so the cat puked on everyfuckingthing.” And many times I am betting a mental FUUUUUUUUUUUUUUUUUUUUUUUUUUUUCK!!!!!!!! brought you a little relief.

And it really did! Studies have proven that swearing brings pain relief. Here’s one, from Scientific American. Mythbusters proved it. And here’s an article in Time that explains why it works best if you don’t normally swear a lot.

SCIENCE IS ON MY SIDE, BITCHES.

I’ve loved that there is a word for it. It delights me when there actually is a word or a term for that thing, like ‘esprit de l’escalier’ for the devastating comeback you think of after the argument’s already over or “semantic satiation” for when you see/hear a word so often it ceases to mean anything. Language is amazing, even if it’s foul. Sometimes, ESPECIALLY when it’s foul. I found out about the Greek meaning a handful of days ago, and was delighted all over again.

I felt a connection to that word, and specifically to what this site is. ALS:FTS has brought me vast relief through swearing about the things that suck, and proclaiming the things that don’t. I get very articulate and sweary when I’m angry, and babbling incomprehensibly when I’m happy, and honestly kind of boring when I’m neither of these things. I like lalochezia as a word, as a concept, and as a therapy. On a whim yesterday, I checked to see if lalochezia.com was available. It was. I toyed briefly with the idea of moving this blog over there, but a bunch of logistical reasons made me leave this alone. Like, domain redirecting and I’ve got cards printed with this URL and all of my email addresses and then what the hell do I do with gifhy.com? I’ve already got two other domains that are just old sites parked somewhere because I can’t bear to bring them down.

And then I had a thought. (It’s rare, but it occurs.) One minor complaint I’ve had about this site is that someone couldn’t freely share it because of the swearing. And I often get people self-editing themselves when they tell me about a bad day, “I feel stupid ranting about this to you when you’ve got real problems”. And that? That is a rant on its own. Which you’ll see. Because it occurs to me that there are a million and one little complaints that we have, all the time, and we don’t feel like we’re allowed to express it properly. We have to be calm and collected instead of just screaming FUCK FUCKFUCKING FUCKER FUCKHEADS!!! at the top of our voice. This site isn’t meant to be nothing but sweary rants, but being allowed to DO that here has brought me peace and catharsis. And I think more people could use that.

I don’t know if it will be a thing people use, but I’ve registered lalochezia.com and I’ve created a safe space for us to vent. Create an account. Prove to me you’re human. And then write about what makes you angry. Use as many swears as you like. The more the better. Complain about everything. Your shitty boss. The barista that shortchanged you. Your vague sense of discomfort and displacement in a dispassionate universe. Or just write the word FUCK 270 times if that makes you feel better.

Let’s fuck shit up.

Attention Developers!

So, you can now totally play with Stephen Hawking’s voice software:

You Can Now Use Stephen Hawking’s Speech Software for Free

I really, really hope the world takes this and does amazing things. The best and brightest technology always finds its best use in the hands of public developers, so many amazing things created that were not even THOUGHT of by the device creators. If you couldn’t tell, I’m a huge fan of open source, and I’m an ardent worshipper of public projects. Someone out there has something brilliant to make, someone can take this software and make it do something so far advanced we never even CONSIDERED that it was possible. Someone is going to take this tool kit and make ALS so much easier to deal with we’re going to wonder how we did without it in the first place, and I’m waiting.

Let’s make something cool.

Tom Waits for No One

A vast number of things have prevented me from completing my voice banking. Changing acoustics in my office due to the move being the primary, but various other things have factored in, like the time my hard drive died and I lost the existing in progress file. I finally had it occur to me that work has phone booths, private little sound-muffled rooms. So I have brought my headset in to work, and finally – FINALLY! – started the process over.

And then this.

tom waits for no one 1

IT EXISTS.

Maybe you don’t know Tom Waits, and don’t care. That’s okay! You should go YouTube something of his and then imagine a digital voice like that. I said that I should make a tumblr for Tom Waits poetry inspired by the ModelTalker software prompts. It would be awesome. And then read that poetry with the Tom Waits digital voice, and the world would cease to be, because it’s just too cool for words. And voices.

I might continue to bug you guys with examples of the ModelTalker reading prompts though. They’re delightfully bizarre.

“The wolves surged to meet him.”

“He had rides in the wheelbarrow.”

“The grizzled old fellow could only see on one side.”

Oh, and the original line was “There’s another way you can get a tooth out.”

Wakey Wakey

A friend of mine, the one recently diagnosed stage 4, had a Celebration of Life party a couple of weeks ago. It was like a wake, only he was there.

I think that’s the coolest thing ever.

Wakes are always awesome in theory, you don’t mope and mourn, you throw a party! And talk about the good times! Yay! But there’s always a little regret; “Why didn’t I tell them this while they were alive”. And the cheer is forced, a bit. WE ARE TOTALLY HAVING A GOOD TIME BECAUSE THAT IS WHAT HE WANTED EVEN THOUGH I AM LEGIT SAD AND THIS IS SHITTY AND LOOKING AT ALL OF YOU TRYING TO KEEP YOUR SHIT TOGETHER IS MAKING IT WORSE. Or the “HOW CAN YOU BE HAPPY WHEN OUR LOVED ONE IS DEAD” crowd that just sit in the corner and sigh. They’re miserable at other parties, too. But the idea of a wake is excellent. Yes. Talk about the good times. Talk about how this person changed your life. Talk about the stupid way they used to sit in a chair and lean allllll the way back until you swore they would fall but they never did. Until that one time. And remember that laugh? Oh god. We got in SO MUCH TROUBLE that night. And allow yourself to miss them, and be sad, and be okay with it, but celebrate who they were, and be thankful that your paths crossed for awhile.

The idea is rad. So why don’t we do this while people are still alive? Someone is diagnosed with something awful, someone is going through a really shitty experience, something happens that is changing their life forever in a bad way, then help it all by throwing a party for the people that love them, invite them all to come and drink and talk about how amazing this person is.

Chad’s party was a little weird at first, like you’d expect. It’s a wake? But he’s here? Um. Wow. Okay. So we just…um. Wow, I don’t know a lot of these people. But we played a game, and they did a really awesome thing with the game to remember us all by, and it was fun. We got to talk, we got to eat, and it was a really, really fantastic excuse to get people to go out of their way for an evening to come and say hello. And for Chad it was probably awesome to have all the visits done in one shot – I know for me, anyway, coordinating visits with people is tiring, and the visits are exhausting, but you really, really love them so it’s worth it. But it would be fantastic to just show up somewhere for a couple hours and have people able to come over to you instead of scheduling ten million things and cancel some of them at the last minute because there’s no spoons or shit happened, or whatever.

So yes. Do that for your people. Divorce, diagnosis, moving far away, whatever. Uplift and encourage. WHILE THEY ARE AROUND TO APPRECIATE IT. It’s better to say this stuff to them while they’re still alive, still present, still able to have their entire day made by a kind word.

When I was diagnosed, and this amazing community sprang up around me, I listened and read while my friends told each other about how they came to meet me, how important I was, how awesome I am. As expected? Total ego boost. But I learned a lot of things I don’t think I’d ever have known. A friend of mine credited me with getting her into our social scene, because I was the only one of the CreepyKids who came over to say hello, so she was encouraged that we all didn’t hate her and it was okay for her to be among us. Which is weird to me, because I didn’t consider myself really IN that crowd, and it would never have occurred to me that I might ever be a gatekeeper to such a thing. But she said I was, and I did, and she never forgot. And I would never have known that.

I don’t know that I’ll ever have such a party, but of course there will be a wake sort of thing. And while talking to Danielle this morning, we determined there’s going to be party favor bags. With a pair of my socks, some stickers, a tiny Japanese thing, and a container of sprinkles. All things I have too many of. All things I adore. All little pieces of me, who I am, and what I like. I think that’s an awesome idea. Once upon a time I made a Happy Box Exchange, and I made little boxes full of things that made me happy. Music, stickers, little toys, sprinkles, candy, delicious scents. Things like that. I didn’t get all of the participants to respond back in kind, but the ones that did, came in FORCE. A baking care package. Another box in kind of all kinds of music and stickers and things. It was a really uplifting experience. Happy surprises.

So imagine that, only instead of stickers and candy, it’s memories and feelings. That would be the best thing ever.

You should do it.

The Best Idea for the Worst Times

I love Emily McDowell’s greeting cards. Snarky, realistic, cheesy, and off the wall without being the office lady who wears all purple and warns the new hires, “You’ll have to watch out for me, I’m a little CRAAAZY!” A birthday card that says “Time to put out this tiny fire while you sing a song!” gets points with me. And a very succinct “Aaaaaahhh! You’re Getting Married!” card. It’s like she’s in my brain creating the cards I would make. I’ve loved them since they came to my attention a year or so back.

They’ve launched a new line of empathy cards. They’re amazing.

Most of them are geared towards cancer, but there are a few that would be just fine for the person in your life with ALS. Put lots of money inside.

I just wanted to point out that these exist, and they make me happy, and that I am so glad to see that there are people out there who get it, making products for those who maybe don’t. Including the simple, “There is no good card for this. I’m so sorry.” It rocks that people in outer circles have options to say when they have no words.

Strong enough for a man

Things that should be gender-specific:

Medical Care
Supportive Undergarments

Things that should not be gender-specific:

Hammers
Water bottles
Pocky
Writing utensils

….actually come to think of it, those first two things are probably an all-inclusive list. All else is unisex. Unigender. Pangender? Social awareness is hard.

PSA, MARKETING IDIOTS: WOMEN DO NOT NEED SPECIAL PINK TOOLBOXES FOR OUR DAINTY WOMEN HANDS. I have ALS but I can punch you in the jimmies just as well as a man can. For now. And when I can’t? I’ll have Danielle do it. And she can hit like a truck, man. You do not want this.

What does this have to do with ALS? Not much. I was looking at knee braces just now and they have ones “for women” that look exactly like the ones that are just “knee braces”. And they’re the same. Only pink. Sometimes? Yes, medical gear needs to be gender specific. But my knee is built like any dude’s knee. Well, originally, anyway, or I wouldn’t need a knee brace I suppose. And so this turned in to this post, which you have just wasted precious minutes of your life reading.

You’re welcome.

Vocabulary

In addition to changes to my lifestyle, I’ve made changes to my vocabulary. I thought maybe you would like to know these words, too, because they’re verbal shortcuts, easy ways to explain something, so long as the person you’re dealing with knows these words, too. So! Some of these are specific to me, and I realize that people reading this might not understand. Then there are some that are REALLY useful in dealing with terminal diseases, and the people who have them. It includes reading other pages. That’s right, I just gave you homework. Deal with it. *sunglasses descend*

MY WORDZ, LET ME SHOW YOU IT:

Godzilla Disorder/Disease
This is how my friends and I refer to ALS. It got that name before I knew what it was, it was just a better phrase than “whatever the hell is wrong with me”. My main babe Danielle came up with it, as I was trying to figure out what to tell people when they asked why I was limping. “Just tell them you got attacked by Godzilla. In the legs.”

Get-Ups
These are different than spoons (definition of that to come). There is a specific number of times I can get up, out of a chair, out of a car, off the floor. Once I’m upright, it’s fine, but the effort of getting up takes more out of me than a lot of other activities. It’s like…it takes more gas to stop and start a car at a stop light than to leave it idling. Same principle. Once I’m standing, it’s fine, but there are only so many times a day I can get my ass vertical.

General Vocabulary, reporting for duty, SIR!

Silk Circle
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
If you only read one thing from this list, it needs to be this. This is how to behave when someone is having a hard time. This is how trauma works. Comfort in, dump out. THIS IS IMPORTANT. There is no better way to put this, and no better way to behave.

Spoons

The Spoon Theory written by Christine Miserandino


This is basically the idea that a terminally ill, or chronically ill, person has a very specific allotment of daily energy units. Mana, if you like (you nerd). You spend these points throughout your day, and when they’re gone, that’s it. Game over. You think “Going to work” is one unit. But no. Every little thing that you don’t even think about (getting out of bed, brushing your teeth, put your clothes on) takes one point. It’s good language to check in. “How are your spoons?” “I’m kinda running on a spoon deficit today, sorry, I can’t go.” “Are you gonna have enough spoons to do all that?”

Also? she totally stole a spoon from that cafe.

Holding Space

What it means to “hold space” for people, plus eight tips on how to do it well


This is a relatively new one for me. I haven’t talked about it here before. This is the idea that sometimes, the absolute best thing you can do for someone, and usually the HARDEST thing to do, is hold space for someone. Just stand by, and be available if they need you. Don’t interfere or get involved if they don’t want you to. Just be on standby for when they do. It’s really hard to stand by and be non judgmental and simply offer support; but I want you to know that it’s the absolute best thing you can EVER do for anyone having a hard time. Just, say you’re there to help, and then back off. Hold space for me. And I’ll hold space for you. I can’t promise I’ll be perfect at it, I’m still learning. But I’ll do my level best.

There are certain to be words to come. There are always new things. New swear words, if nothing else.

And we’re back.

Yesterday was a bit of a tail-end meehhhhh day but today we are back to our regularly scheduled optimism. Things seem a lot more manageable today. I also have an appointment with my shrinkologist, and I intend to ask him about coping methods. Bad days don’t happen often, but when they do, I’d like more in my toolbox than “take an ativan and go to bed”. Sleep is indeed a panacea in my world, but it’s an inconvenient cure when there’s work to be done.

My main babe Danielle and I have plans to meet with the aforementioned friends for a night of talks and Cards Against Humanity. I intend to show off my “I’m Dying” cards. I have a coupon for 250 free business cards, I think I’ll print some up, wallet sized. And I can carry them around easier (though I LOVE LOVE LOVE the ones Megan sent me and have those in my purse at all times) and divvy them up to my similarly dying friend. I think he’d appreciate them.

What else. I got an awesome new cane! It’s clear plastic and hollow so you can put things inside! But it’s heavier than I thought it’d be, so filling it with things like candy or gaming dice might not be viable. Boo. And a little short. I will have to figure out how to fix that. And then I will have the nerdiest cane EVER.

OH! And I have to tell you about the pulmonologist. That’s it’s own post.

So there.