Fuck you, it’s funny.

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

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

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

We laugh our asses off.

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

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

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

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

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

Some days, the gallows are hilarious.

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.”

Hilarious

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

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

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

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










Inappropriate Friends are the Best Friends – Part 6

My cats knocked my depression meds into their water dish and I was completely unable to do anything about it, because it’s a heavy ceramic fountain. So not ONLY did they ruin half my monthly supply, they poisoned their water. Assholes. Insult to injury, it was the day after my friend Lizzie had come over and thoroughly cleaned the fountain out while she was helping me with cleaning the apartment (we love Lizzie a lot). She expressed dismay that she’d JUST cleaned the damn thing out, and I told her that it was okay, I’d strongarm J into helping me.

She replied in an email, “If you had strong arms, you wouldn’t have to ask J!”

And I laughed a lot.

She had replied in email instead of comment, because she wasn’t sure it was too far. It wasn’t. Gallows humor keeps me able to deal with this, and I realize that sometimes even my own jokes are ‘too far’ for some people – like recently when someone asked me how my new tattoo’s white ink was going to fade, and I told them I’d be dead before I had to worry about it.

Some day, someone will say something that goes too far. probably. Maybe. I dunno. I’m pretty fucking dark. It’s beyond gallows humor…guillotine humor? Firing squad humor? Saying it out loud a lot of times as a joke makes it easier to take it seriously. The concept of your own mortality is a bitter pill to swallow, so I need to wash it down with humor.

At least for as long as I’m able to swallow.










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.










Inappropriate Friends are the Best Friends, Part 4

As I mentioned in the last video, I’ve developed a habit of cussing out my own body when it’s not responsive to my commands, which has vastly amused people. Here I am trying to get in to a car and my leg isn’t lifting quite high enough to clear the door, and I’m hissing “come onnnnnnnnnnn!!” Or pretty much every time I’m about to fall, I bark out “NO!” like…BAD DOG! NO FALLING! It’s like Jedi Mind tricking my hand into gaining the strength to turn the house key in the door by saying “doooo iiiiiiiiit”. It doesn’t work. But I swear it helps. Sort of.

J, ex-husband, power friend, and awesome dude came over last night to help me clean my kitchen a little. I assisted by staying out of his way, and cleaned up the foulness that my elderly cat had deposited NEXT to the litter box. J gracefully listened to me whining about how changing out pee pads and emptying the Litter Robot’s tray (SERIOUSLY THIS IS STILL THE BEST THING EVER, GUYS, GET A LITTER ROBOT) had me out of breath and sweating, gently reminding me that he TOTALLY could have done that for me, you know. He’s one of my best allies and I’m grateful we remained really good friends – I don’t get how someone can be in a relationship with someone else for ten years and then just never speak to them again because the romantic part didn’t work out. I’ve been close to him for a quarter of my life, we’ve been through some serious stuff, so yeah, I’m keeping him around. He’s important. Dude also gives me rides to work, so that’s a plus, and we provide each other with talk therapy all the time. I’m not exaggerating when I tell you that probably no one on this planet knows me better than he does.

He’s leaving from my place to go work out, and he’s burdened down with his gym bag, his street clothes, his keys, dude’s hands are completely full, and I exacerbate it by asking him to put the trash can outside the door for collection when he goes out cause now it’s full of litter and heavy. He complies without complaint, and rather than letting me get the door for him like a sane person, he struggles to open it with full hands AND step out of the way while opening it but there’s a stack of recycling in the way, and having a hell of a time. He hisses “OH COME ON” to himself to get the doorknob to turn.

“Careful,” I tell him, grinning, “you’re starting to sound like me.”

“I yell all the time,” he tells me dismissively as he walks outside, “only it’s usually at inanimate objects.” He pauses, and gets this really strange look on his face.

“…..What?”

He grins sheepishly and confesses, “I am a horrible person.”

“…And?”

“Well it occurred to me, you *could* say the same thing.”

We both bust up laughing. “Fuck you,” I tell him, and close the door.

He gets me.










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.










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.










Phrasing

We went to lunch today, my friend and I, and an elderly woman with a cane was leaving the restaurant as we were entering. She saw mine, and good-naturedly welcomed me to the Cane Club. Her companion, an elderly man also with a cane, came through the door as my friend held it for him. “He’s had his for 2 years, I’ve had mine for one.”

“I’m coming on I think nine months,” I told her, smiling.

“I see so many young people with them lately,” she lamented, kindly. “It’s a terrible shame. I really hope you’re done with yours soon.”

“I will be,” I nodded and assured her, “eventually.”

And I walked in to the restaurant, my friend was slightly flummoxed. “That’s uh…a different way to look at it.”

“Was I wrong?” I demanded, laughing. “I didn’t LIE.”

“….No. No you did not,” he conceded.

Sometimes it’s just in how you phrase things.










Taking a Joke

As I wall-surfed* down the hall today, a coworker from another team greeted me, “Howdy, Hopalong, how you doin?”

I laughed and told him I was good, him?

And that was pretty much the end of it, until he came over to my cube, later, bearing chocolate and very contrite. “In retrospect,” he said, “that was an incredibly insensitive thing to say.”

“It was funny, you’re good,” I told him. “But thanks for realizing it COULD have been a dick move.”

There’s a certain comfort in someone casually poking fun of this, I think. It was not disrespectful at all. He and I tease all the time, it was natural and casual and not insulting at all. Taking this stupid disease so seriously gives it more power than it deserves, so it’s nice occasionally to have someone talk like it’s no big deal. There’s a careful line to walk, of course, you don’t want to be all HURR HURR DISABLED PEOPLE AMIRITE!? LOLZ but you also don’t need to tiptoe around it like it’s a demon that will be summoned if you speak its name.

Joking makes it feel normal. And that’s okay.

*I owe this phrase to Rachelle from ALSA, who used it to describe how I walk down the halls with one hand on the wall to steady myself when I don’t have the cane. Wall-surfing. It brought me joy.










Thank the Good LORD for great friends.

Not even an hour after I posted that last entry, and sat here, feeling very small and afraid and helpless, my little brother Eric sent me this:

bahahaha

And I went from crying with grief to crying in laughter.

And that’s how I know I have the best planets in my orbit.










Inappropriate Friends are the Best Friends, Part 3

Danielle: I think you should be cremated with all of your stickers. Random thought of the day

me: that’s a LOT of cremation material

Danielle: ok, maybe just some…you can designate your fav binders. all the halloween ones

me: burn my cat stickers, my Lisa Franks, and the halloween ones hehehee

Danielle: hehehee there ya go

me: though that’s the majority of them, I think

Danielle: I was thinking that, yes

me: maybe just sticker my corpse and call it good

Danielle: Oooo it’ll be a wake game

me: hehe see?

Danielle: that was bad

me: Pin the sticker on the Vashti!

Danielle: hehee not entirely ashamed hahahaa

me: Give everybody penny stickers and if they can get them on my eyelids, they win!

…and then, because we’re not TOTALLY horrible people, we discussed her excellent idea of maybe donating my stickers to local teachers.










Thank God for Happy Planets in My Orbit.

Chat Log from today.

Eric: you write to much
going to need you to cut that down to like 2 paragraphs
thx

me: TL:DR – GONNA KILL MYSELF SOMEDAY AND YOU CAN’T DO NOTHIN ABOUT IT

Eric: yeah add a tl;dr on that shit
process improving
😀
but do tell me before it happens

me: I will. fo sho

Eric: i need to know so i can come steal that zombie tramp poster before anyone else
you know how it goes

me: hahaha I will make sure you get it.

Eric: and your baking stuff then we’ll call it square for all my years of service

me: hmmmm baking stuff might be a hard sell
I can add you to the pool of people to divvy that shit up

Eric: i dont want the divy
i want it all
im more qualified than anyone else

me: ….besides Eryn who went to culinary school with me

Eric: with my deep german baking heritage

me: hehehe

Eric: do i hear bake off?

me: XD

Eric: ok ok
if i make you the most amazing black forest cake
you put my name in the hat twice
deal?
k deal
and now i take my leave
to go sit in a class with people who dont even take notes

me: ok bye

Eric: DEAL
poof

me: (you forget I don’t like chocolate cake)

Eric: no i dont
but you’d eat it because it was the most amazing of all cakes
then you’d be like, shit my als is gone
too amazing
too
amazing

me: hahahahh I <3 you And I really do. Eric’s a good kid. The little brother I never had, even though I have a little brother. He is my spark of mischief, I am his Jimmy the Cricket.










Calling Cards of AWESOME.

Speaking of cards!! You may remember a conversation I had with my dear friend Megan about playing the “I’m dying” card, and she decided to needed to make me actual cards with various demands.

GUESS WHAT.

SHE MADE ME THE CARDS.

I can play this card whenever I want!
I can play this card whenever I want!

She and her fantastic husband Colin actually made me the cards. They are a physical thing. They are sparkly embossed and amazing. They ALSO gave me the Jack Skellington and Oogie Boogie figurines you see (and I heart them SO HARD) and the black heart decoration which does not at ALL show up in this picture. But it is soft and awesome.

Megan is one of the most thoughtful people I know. She once made me a little box of lip cutouts that she’d kissed with lipstick on, for when I need smooches and she is not there to give them. I can’t tell you how amazing she is. Her husband Colin, who I’ve known just as long, is also amazing and full of love. He is the perfect partner in crime for her and I love them more than I can ever possibly tell you.

And THIS, THIS is how I survive with a smile. I am orbited by planets of awesome, and the pull of their gravity keeps me from collapsing in on myself.

I love these cards and I am looking forward to the looks on people’s faces when I actually use them. I love the people who made them. I love the people who gave suggestions for them. I love that I have such amazing people in my life. I love that my diagnosis has shown me exactly how loved I am, and how completely I am surrounded by the brightest and best people in the universe.

I love my life, ALS and all.










Kiss Me, I’m Dying

One of my very favorite, most used bits of gallows humor is the idea that the world somehow owes me something because of my disease. I call this the “Fuck It, I’m Dying” defense.

…Of course I don’t actually BELIEVE that, that would be stupid. Even though I know there are some terminal patients who do think that way, it makes absolutely no sense and that’s a ridiculous way to think. I present you my very very favorite poem ever:

A Man Said to the Universe
BY STEPHEN CRANE

A man said to the universe:
“Sir, I exist!”
“However,” replied the universe,
“The fact has not created in me
A sense of obligation.”

POW. The world don’t owe you JACK SHIT, my friend, if you’re dying today or tomorrow or a hundred years from now. But it’s funny to think so.

Any time I think I might get in a little trouble at work, like I forgot to submit my monthly status report (OH MY GOD I TOTALLY FORGOT TO SUBMIT MY MONTHLY STATUS REPORT! SHIT!) my friend and coworker asks, “What are they going to do, fire a dying woman?” When we don’t choose where I wanted to go to eat, “Demand it anyway. You’re dying. OVERRULED. We’re gonna go get Mexican, bitches.”

I was talking tonight with my dearest Megan (who is awesome and you should BE so lucky to know her) about traveling for business, and sourpuss coworkers who just want to go to the hotel after work and not explore the city. Especially if you’re in another country! COME ON MAN, LET’S GO HAVE AN ADVENTURE. Megan agreed, “Yay, adventure! Demand adventure. Play the I’M DYING YOU HAVE TO TAKE ME ON AN ADVENTURE card.” I told her, “I LOVE that card!”

And then she said, “Okay, now I want to make you cards. Two-sided, business card, or maybe a little bigger, like an old fashioned calling card…One side: I’M DYING. Other side: miscellaneous demands.”

I’M DYING…

I DEMAND CAKE.
I DEMAND SEX.
I DEMAND KITTENS.
I DEMAND ADVENTURE.
I DEMAND FREE STUFF
YOU HAVE TO FORFEIT THIS ARGUMENT
TELL ME I’M PRETTY
BUY ME SOMETHING
CARRY MY SHIT
CARRY ME

I’m sure you all can help me think of other good ones. Let’s hear them.










Inappropriate Friends are the Best Friends

AKA: Things I Say That Apparently Only I Find Funny, Part Two

At my job, we go through a yearly review process called Focal. As a part of that, mid-year we do a baby Focal with our managers as a way to touch base with where we are, where we’re going, and how to get there.

I had the following conversation over work chat with my friend Jack:

Me: Can I list “was diagnosed with a terminal disease and successfully did NOT lose her shit” as a focal point?
*Organized
*Team-centric
*Dying

Jack: “Dying but upbeat! Until she dies.”
“Then no beat.”

Me: Areas for Improvement: Dancing.

Jack: Notable accomplishments: Swagger.

Me: Strengths: Pretending that any of your shit even matters, in the grand scheme.

Jack is one of my favorites because he goes with it and is even more horrible than I am.