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:

https://www.nbcnews.com/tech/innovation/you-can-now-use-stephen-hawkings-speech-software-n411706

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.

Final Days in the Zombie Tramp House

Things are coming together. I have a schedule. I should be able to put the house up on the market in about 2 weeks. I have nearly everything upstairs packed up that doesn’t need to go with me to the transition apartment. I have just the kitchen stuff to go through now, and squirrel away what I don’t need. From here, I’ll shift everything into the garage and eventually into storage, and then ‘stage’ my house as best as I can. Primarily this includes turning the ‘den’ back into a den and not an extension of my kitchen, the way it has been.

It’s been…an interesting exercise. To say the least. There’s the melancholy duty of going through my things with a very different moving mindset. You know, typically there’s the “have I used this in the last year? Do I really need this?” sorting, but mine’s had an additional “Am I ever going to use this again, and do I want to keep it anyway for sentimental purposes and have my family have to throw it away later?” There’s a fine walking line between “center circle, bitches! Keep ALL THE THINGS! It’s not my problem to deal with it later, I’ll be DEAD!” and “my death’s hard enough business for them, I should make it easier as much as I can”. I don’t want to sacrifice my current enjoyment of life in the interest of making things easier when I’m gone. But at the expense of a little time now, I can save grief later. It’s a hard business, going through someone’s things when they’re gone. So much crap, so many things important to me that are meaningless to anyone else. Do I let them go now? Or do I keep them, even though I know I’ll never look at them again and in all probability they’ll stay here in this box until someone throws them away.

There’s a sort of freedom that comes with this, too, a relief of obligation. I don’t have to hold on to this anymore. There’s no reason. I can give this up, it’s okay.

But the kitchen.

I had such plans, and dreams, and schemes. A professional workbench, a partitioned off section for chocolatiering, baker’s racks for projects..

and now I can’t. Because I know damned WELL I’m never going to be able to do that stuff. I can still bake, for now, and make candy, but nowhere near on the scale I wanted to. So in going through my kitchen gear, there’s the extra bitter edge to it. “Am I going to use this ever again?” “NO. Because I CAN’T. And that is SUPER SHITTY.” It’s the second major physical concession I’ve had to make, the first being the sale of the house in the first place. But I know there’s no point to outfitting my new kitchen like a professional workspace, because I’ll never be able to use it to its capacity. And that sucks.

BUT!

It also means I am no longer obligated to bring the cake.

“Oh we don’t need a Safeway cake or anything, Vashti can make one.”

“Um. I’m kinda busy that weekend, though. I’m not sure I’ll have the time.”

“Well, I guess we can just grab one from Costco.”

“FUCK THAT I WILL MAKE YOU A CAKE. Such a cake you will never have SEEN. Because FUCK Costco cake.”

It also means no more random experiments like the Meatcake, at least not as frequently as I did. That might be better for humanity. No one should wield that kind of power.

So this weekend I hope to finish packing up the kitchen unneededs. Over this coming week I’ll finish up my office and everything upstairs. Next weekend staging. And then…put the house on the market and see what happens. I don’t expect to have problems selling. Hopefully I won’t have problems finding a temporary apartment. Or a new home.

Right now, though, I’d like to find a nap.

Password what?

Yyyyyyyyeah so that last post is locked down because it’s not really appropriate for the public.

I was/am very, very angry about A Thing, and wrote about it. I am angry about Some Things in general, and I also wrote about those because they’re related.

Those will probably get their own post because they’re not specific. The Thing was very specific and angry and name-cally and not really something I should put up here. But I WANT it here, because writing it made me feel a lot better, and I want to remember every piece of this. It borders on libel so it’s private, but it’s a piece of the map. I poured my anger into a post that belongs here, but there are definitely some things I probably shouldn’t say out loud. Which SUCKS! I’m DYING! I should be allowed to say WHATEVER I WANT!

But I realize I can’t. So when I’m gone, that post will be unlocked. <3 Just wanted you to know whyfor that last thing.

“Privileges”

I joke a lot about “membership has its privileges” when I get some special attention over my disease. Closer parking spaces. People holding the door for you longer than they normally would. Things like that. I definitely notice I’m getting special treatment, the more debilitated I get, and “privileges” is becoming kind of a tired joke, but I’m learning daily how differently people get treated when they’re “less than perfect”.

I went through Security Theater this morning, to get on a plane to come to New Orleans for a vacation. (Hello from New Orleans!) Megan and Colin were my partners on this venture, and Colin did a fantastic job of running interference for me. We researched what was needed for someone to go through security with a cane and braces, and Colin was marvelous at stepping up and informing the various security peeps of what was expected.

Sidenote: Post 9/11, this was the most pleasant TSA experience I’ve had.

I didn’t have to remove my braces, they swapped my metal cane with a wooden one so I could walk through the metal detector, and then had me (try to) stand in the imaging machine – not backscatter, it turned out, some other technology. Megan’s going to research that. I wobbled. They patted me down a lot and swabbed my hands and shoes for explosives, and then a really nice TSA officer collected my things for me and led me to a chair to wait for the other two.

My cane and braces got us in the fast track through security. My cane and braces got us boarded first. Pre-boarding, bitches! My cane and braces get me more attention and consideration than I’ve ever had. It is just weird to me still, to be granted privilege and special status because my body is betraying me. “Here, you have less time, literally, than the rest of us. To the front of the line, please.” I’m grateful for the consideration, it sincerely does make my life easier. But it feels weird and alien still, because there’s that edge of “I don’t deserve special treatment” and “I don’t NEED special treatment” and on either side of that chasm is a yawning abyss of “Shut up, yes you do.”

I’m not sure what the point of this is. I guess part of me is a little appalled that it takes something like a terminal disease for people to notice and be nice to you. And I’m just as guilty of it. I’m far more likely to smile at a total stranger with some sort of affliction, like – hey, you’re okay, man, you’re cool. I’m on the other side of that now and… it’s not insulting at all, but it’s a little sad. Like, why wouldn’t you hold the doors for that dude but you’ll hold them for me?

And I joke about “membership has its privileges” but..really, it seems only fair that the universe dishes out SOME gentle allowances to soften the blows. Even if it’s only in letting me on the plane 20 minutes before everyone else. For every fall, there’s someone to help me back up. I’m happy to be in New Orleans on someone else’s dime, and I honestly couldn’t ask for two more considerate and compassionate travel companions who are on point and looking out for ways to make my life easier. (They were always there, though. ALS didn’t do SHIT for me on that front.) So I guess, if the universe is saying “Sorry bout your terminal disease, have everyone letting you on the plane first as a consolation” isn’t that bad. At least it comes with something. And I am grateful for those little mercies. They really do soften the blows, and make things just a bit easier.

I’m privileged to have those small mercies.

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.