FORTIFY

on top of gravity:
I asked one of my (male) friends to stop using the phrase “man up” and he has been using “fortify” for the past two weeks instead and it’s just a little thing but honestly it makes a difference
and tbh it’s also pretty funny when I start to deflate in the library and he leans over and goes “FORTIFY”

Seriously try that. J and I use it now and it’s awesome. Sometimes when I’m whining, even though he knows I have every right to (CENTER CIRCLE, BITCHES), he will just grin and shrug and say, “Fortify.” And I will flip him off the best I can, and we laugh and go about our lives.

There will be a real post soon – I know I keep telling you this. But Monday is Clinic Day so there will be lots to report on that front. Meantime I thought I’d check in with just a quick thing about the weekend.

It wasn’t particularly kind, if I’m being honest, but there were moments of goodness interspersed, for certain. I mean, it started with a road trip to Olympia to see a black metal show. How is that not awesome? I’m not generally in to black metal, but Wolves in the Throne Room are an exception. They’re not so much Black Metal as…Black Folk? It’s more melodic than the usual stuff, and they have been properly described as “atmospheric black metal”. None of the cheesy SATAN666OMG stuff. I like it. It was two and a half hours away, on a school night, and the venue was this ADORABLE little place that served surprisingly delicious food and had the cutest waitstaff OMG and delightful bathroom graffiti (next to the signs that declared said bathrooms to be transgender friendly, use whatever restroom coordinates with your identity, and if someone gives you a problem, please report their asses and they will fix it). The music of course, was WAY too loud for the small room, and the geniuses decided that a smoke machine was a good idea so I spent some time breathing through my shirt, and then some jackass decided that you know what this concert needs? For me to blaze up in this tiny room.

So yeah I had a headache.

The show was awesome though, a dear friend in Seattle had joined us, and the opening act was every cheesy stereotype I could hope it to be, including announcing themselves in a Cookie Monster voice “WE ARE BLACK! FUCKING! CANCERRRRRRRRRRRRRRRRR!” And yet, the whole time I was listening, I was so tired I felt like I could fall asleep any minute. Even with Cookie Monster screaming about forests or satan or whatever. I don’t know what the hell that band was about. We got home around 4, because the show was an hour late to open, and had 3 bands, and was two and a half hours from home. I had wisely taken the next day off. I slept until like..3, and then took a nap, and then went to bed early. Working all day and then car ride and then socials and everything was way too much and I was DONE for the whole day.

Saturday I FINALLY got my Fallout 4 install working. I’d had to reinstall my operating system, so everything is cattywampus still, and I hadn’t played in forever because getting everything how I like it was just too daunting most of the time. So I finally got all my add-ins working, got it set up for use in the bedroom so I can lounge and play, annnnnnnnnnnnnnnnnnd…..discovered my hands don’t work well enough to play on the wireless keyboard anymore. My left ring finger seriously droops, and that’s the finger that controls moving LEFT, soooo….unplayable. I tried for a little bit and gave up. I’m going to have to get a controller. Which SUCKS because I am totally a mouse/keyboard gamer.

Sunday I had a friend come over to help me around the apartment. AGAIN – people just…show up! And do cool things! And the hardest part is always just LETTING them help. I’m so grateful I can never even HOPE to say how much. While I was shifting some things around for her arrival, I had a fall. Not a bad one at all, just…wound up on my butt. I got up with little difficulty and went about my day. I continued to think about it, but it didn’t really upset me or hurt me. Just, whoops, on the floor. Get up, move on.

That evening we went to dinner with Gecko for his birthday, and we did Brazil Grill. If you’re not familiar with the place, you sit at a table, and they bring huge hunks of meat around on swords. And they carve you some, and you eat meat until you DIE. And then they bring you cinnamon sugar glazed pineapple and you know you’re in Heaven. I love this place. Only trouble is, when they carve off that beautiful slice of tri-tip, you have to grab it with your tongs and take it to your plate. I had to use my tongs with my whole fist, and still didn’t quite manage to grab it a couple of times. The delightful gaucho (dude with the meat sword) apologized every time, but it was clearly ME dropping it, not him cutting, and I wanted to tell him “It’s not you, my hands just don’t work” but I didn’t. I wound up putting my freakin’ boob in my plate once, reaching over to try and grab the slice properly. And then cutting up the meat was its own challenge, and trying to be discreet when my hands inevitably cramped up with the effort was useless because 1) I have to do a prayer gesture with my hands to get it to stop, and 2) my brother is observant AF. But it wasn’t a huge deal, just a quiet “hand cramping?” “Yah.” and that was the end. I realize next time, I’m going to have to ask someone to grab the slices for me. And probably cut my steak.

Four slaps in the face from ALS this weekend. The exhaustion, the loss of playing video games with mouse and keyboard, the fall, knowing I’m gonna have to have my steak cut for me like a toddler from now on….and yet.

And yet.

Not once did I lose my shit, or even feel like I was going to. Or needed to. Just a quiet acceptance. The exhaustion was to be expected, and things like this are just going to require a full day recovery anymore. That’s how it is. Gaming, well, I knew that it was coming, and I’ve been keenly aware that my ring finger in particular is very weak, so it makes sense that I can’t really do it anymore. The fall, well, they’re going to happen. Until I am no longer able to get up out of a chair, and even then, I’m going to get dropped. Being unable to cut my own food in the future, well, I’m honestly glad I’m still even able to EAT steak. And I have people willing to cut it for me. Gecko and his husband would have done it in a flash, had I asked. And next time, I will.

ALS still sucks. But I’m getting better at coping with the losses, to foresee them happening and bracing myself.

To fortify.

And that’s pretty awesome.

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.

Fuck You and Your “It’s going to get worse”.

Okay so wow.

https://www.facebook.com/fox12oregon/posts/10152550068903701?comment_id=10152550463373701

I KNOW BETTER THAN TO READ COMMENTS ON THE INTERNET. I KNOW.

But this was important. This is something I care a lot about. If someone out there wants more information about this, I’d like to be able to step in and help out. And Jack asked if I’d seen them, and linked me, so I clicked.

Most of them? Lovely and supportive. Hooray for those people. I love them. And my friends who spoke up in support. I love you.

But a hearty FUCK YOU to the shitshark who felt compelled to comment “Pretty lady if she didn’t put all that metal in her face.” Yeah, I got enough of that oh, at EVERY FAMILY GATHERING GROWING UP EVER. And I didn’t give a shit about how my FAMILY felt about it, why the fuck would you think YOUR opinion matters to me? Get fucked SIDEWAYS. I didn’t have to weigh in though. My posse stepped up and put him straight before I got there. <3 These other ones, though. HOLY SHIT, people. "My father died because of ALS. He was one of four in one family. And I tell you to have the voice record is the smallest problem you will have when you have ALS!!!" "Mom passed from ALS in 93, not bn able to talk was the least of our worries. Absolutely horrible disease" …I've actually heard of people approaching someone with ALS and say, "It's going to get so much worse" ..AT A MOTHERFUCKING SUPPORT GROUP. GOD DAMN IT, PEOPLE. Here's a clue you are so DESPERATELY NEEDING: Telling someone with a terminal, degenerative disease "it's going to get worse" HAS NEVER BEEN USEFUL TO ANY ONE IN THE HISTORY OF FOR FUCKING EVER. The only one who get ANYTHING out of that is YOU because you get to feel OH SO FUCKING KNOWLEDGEABLE. Your dad has ALS so OBVIOUSLY YOU KNOW ALLLLL ABOUT IT and someone who actually HAS this disease HAS NO IDEA WHAT THEY ARE IN FOR so you had BETTER TELL THEM. Fuck you. Keep your fucking mouth shut. NEWSFLASH: You are NOT helping. You are NOT helping me prepare for the harsh realities of the disease. You are NOT educating me. You are not even freaking me out. You are JUST PISSING ME OFF. Let me educate YOU. When you are going through the medical rat maze of trials and tests, and ALS is among the possible exits, THEY TELL YOU ABOUT THE DISEASE. If you didn't know about it already, THEY TELL YOU WHAT IT IS. When you narrow it down, THEY TELL YOU A LOT MORE. If you don't do the sensible fucking thing and research it yourself, there are medically trained professionals who will talk to you about it. THE PROCESS OF DIAGNOSIS COMES WITH AN EDUCATION. And here's something I did NOT know. When you are diagnosed? THEY GIVE YOU BOOKS ABOUT IT. Seriously. Like, six of them. My diagnosis came with an appointment with a social worker, and she had books for me, a book for the people who would be my caregivers, and pamphlets about estate laws and wills and power of attorney. People bend over BACKWARDS to tell you anything you could possibly want to know. And by "people" I mean TRAINED AND LICENCED MEDICAL PROFESSIONALS and not "some stupid opinionated bitch on the internet." So let me be the first and hopefully last to let you know, you're not helping. You're not wise. You're obnoxious, detrimental to my emotional well being, and a waste of my time. It alllllllllllllll goes back to the Silk circle, and the magic phrase: "I'm sorry this is happening." Comfort in. Otherwise shut the fuck up. And if you make the mistake of telling me "it's going to get worse" to my face, I will obligingly tell you all of this in person. And just when you think I'm done yelling? It's going to get worse.

Simple Gestures

Very little makes me quite as happy as random happy surprises in the mail. For this reason, I was an avid participant at http://redditgifts.com/ , where you sign up to send a random stranger a gift, and another random stranger sends YOU something. I got burned a couple of times, but overall, it was a lovely experience. I’m actually waiting on my Arbitrary Day exchange now! I was matched with someone in the Netherlands, I hope she likes what I gave her.

Awhile back, I set something up with my friends called Happy Boxes. The idea was similar, only you knew who your match was: me. I sent anyone who asked a box full of things that made me happy – things like cake sprinkles, finger puppets made into fridge magnets, candy, stickers, scented candles. In return, they’d send me something. I sent out ten boxes, and I think I got four back? But the ones I got back were awesome. My dear friend Marina went COMPLETELY overboard and sent me a huge box of baking supplies from King Arthur Flour. Another friend sent me a box chock full of awesome things she’d been collecting for me for some time.

It is a guarantee of happy. A complete cure for a wretched day.

I sent a message to my friends on facebook awhile ago, offering to do this again. I had some people tell me they were interested. But thennnnnnnn I bought the house, and then this whole Godzilla Disorder thing happened. So I lost track of the Happy Boxes, and they were relegated to the back burner. Maybe forever.

One of my friends, though, didn’t forget, and a three weeks ago, he sent me a message:

Hey Vash, check this out and gimme a yea or nay: http://www.lootcrate.com/

I thought he was asking for opinions before he got himself a subscription, so I told him I knew a couple of people who subscribed, and I’d heard that they were awesome!

And he told me he “would be honored to buy me a sub”.

And I blinked a few times. And had the most intense mental battle with myself. Because I have a really hard time accepting acts of kindness, as I’ve said before, but I’m ALSO trying to be more gracious about it when people offer to do awesome things for me. So I said okay.

It arrived yesterday, and it was FULL OF AMAZING THINGS including one of the best teeshirts ever. I raved about it to my facebook friends, and posted lots of pictures, and thanked him a lot. Because it was an incredibly sweet thing he did, and the timing was perfect as I’d had a REALLY rough week at work. And among the comments on my pictures, he posted this:

“I want to take a moment and explain my motivation, since this post may reach eyes that don’t know the whole story. For the record, I got permission from my wife before I offered to set this up. 

I met Vashti Ross about 12 years ago. We worked together at Stream in a call center, and became friends (as much as two co-workers can become friends, anyway). Years later, we reconnected over Facebook, and I’ve watched the story of the ALS diagnosis.

When the ALS was confirmed, it broke my heart and I wanted to do something to help, but being a work buddy is pretty low on the relationship priority chain. Then, last month another friend Cameron at my current job posted about LootCrate, and I basically had a big House-style epiphany.

“kindness in.” There’s nothing I can do about the disease, and there’s probably a few dozen closer friends/relatives that can help with daily needs, but I sure as hell can add to the “happy moment” pile.

To quote The Doctor: “The way I see it, every life is a pile of good things and… bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t necessarily spoil the good things or make them unimportant.”

Vashti, I am thrilled that I’ve added to your pile of good things.”

Nathan is an amazingly sweet person. I also adore that he quoted the Silk Circle *AND* Doctor Who.

That whole “I don’t deserve this” definitely kicked in. MORE so, when he posted a referral link to that site, where every five people who subscribe through it gets me another month, and then my dearest friend Megan posted that link to her wall: “One of my dearest friends, Vashti, was recently diagnosed with ALS (http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis), and though there is nothing we can do about the stupid disease, there is plenty we can do to shower her with love while we can.”

Annnnnd my heart burst out of my chest and I felt so. Amazingly. Loved. And then another friend shared that link. And then another. I am completely overwhelmed by love. THERE IS GOOD IN THE WORLD AND I AM ITS UNWORTHY RECIPIENT. And while it’s LOVELY to get a box of awesome little nerdy geeky fun things, it’s the fact that someone out there, that I’ve not even SEEN for ten years, cared enough about me and wanted to lighten my load just a little bit….that..I’m not gonna lie, I totally teared up. Am doing so.

I am so so so grateful for the people in my life. In a comment thread on one of those posts, I told a friend-of-a-friend that I was lucky to have such an amazing support network. I didn’t have to ask for anything. When I looked up, everyone had their bags packed for this journey and were coming with me, whether I asked them to or not. “You ARE going to get over yourself and ask for help, and we WILL provide it. Now. What can we do for now?” I don’t know what I’ve done to deserve them all. You all. Every planet in my orbit.

It’s what will make the difference between simply surviving with this disease or living with it.

The Silk Circle Theory vs Sympathy Points

Okay, the first thing I need you to do is go read this:

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

It’s important enough that it lives in my sidebar forever and for all time. I wish this was mandatory training in school when we are children. It would have saved me from accidentally being an asshole and inadvertently causing grief for those I love when they’re having a hard time. The center circle is the Sun, the outer rings are the planets; the closer they are to you, the tighter they’re pulled in to your drama orbit. You radiate pain and complaint, and they absorb it in the name of love and comfort. The Silk Circle theory takes the phrase “it’s not about you” and expands it to include a very simple two-rule set of mandatory behavior. Comfort in, dump out. The end.

I have taken “CENTER CIRCLE, BITCHES” to be kind of a mantra. It’s as much a reminder to the people around me that I need support, not drama, as it is a reminder to myself that it’s okay to be selfish about some things. I do not *have* to consider the feelings of other people when writing up my advance directive. I do not HAVE to be shy about what I honestly want on my bucket list. I do not have to apologize for being the bearer of bad news when people ask me if I’ve figured out what the limping is about yet.

I do not have to participate in my caregivers conversations involving delegating responsibilities. My social worker actually said that it’s best if I’m NOT involved. Just…work that shit out behind the scenes, and I will rely on you as a whole that it is getting done. Because I appointed you as caregiver. Because I trust you.

As center circle, though, I need to be cautious that I don’t burn out the bigger rings. The diagnosis is new. I have some leeway. But I am absolutely NOT allowed to make them miserable by complaining non-stop and insisting that life is All Vashti, All the Time. There are other channels besides ALS SUCKS ASS. The channels that made people tune in to me in the first place.

In addition to the Silk Circle, there are Sympathy Points. I’ve had this belief for more years than I know, it’s something that’s always been true and eventually I figured it out in words. Sympathy Points are a crucial part of any crisis, too. They work like this:

You get ten.

Each instance is one event. One illness, one accident, one breakup, one lost job, one stupid mistake, one whatever it is that puts you in center circle. One instance of you totally losing your shit and you need me to help put you back together. And for each of these ten instances, you have everything that I am capable of giving to you for help. Ten instances where I will give you my absolute sympathy. I will do my UTMOST to help you and fix your problem. Ten instances of me taking the bus to the hospital to sleep in a really uncomfortable plastic chair in your room with a watch timer set to go off so that I wake up to press your morphine button for you so that you can sleep without pain. Ten instances of 2AM phone calls in tears because you can’t believe he left you and I will listen to you even though I have to be up at 5 for a very important presentation at work the next day. Ten emergency showings-up to your house this weekend because you suddenly got evicted and you need to move your shit, like, NOW. Ten instances of me loaning you the content of my savings account because you can’t make your rent because you were sick too often this paycheck.

Sympathy points regenerate, over time. Slowly. You might spend more than ten over our relationship. But if you use them all too fast? Then they’re gone forever. Once they run out, you never get another one. That means I don’t loan you money. I don’t show up at your house with cupcakes and cartoons because she just left you. I don’t take the bus two hours out to your place after work to watch your kid because your babysitter bailed on you. I won’t go out of my way for you at all. Instead, I will pat your back sympathetically and tell you I’m sorry that this is happening to you.

The end.

Because running out of sympathy points means you’re a fucking trauma queen.

Ten is a LOT. And to have ten crises in a short time is very, very hard to do; it’s more likely that you’re not having ten legitimate crises; you’re probably overreacting, or creating the drama for the sake of the drama. Or you just have a really, really shitty outlook on life and take everything as the worst case scenario. Either way, that means you’re toxic. And that means I do not need you in my life.

As center circle, it is my duty to not burn through my sympathy points. This is, as a matter of fact, all about me, but I must be careful to not burn out my support structure. I have an advantage of being automatically inclined to optimism, and I have a buoyant personality by nature. I can’t NOT pay attention to how my actions are affecting other people. On your fifth or sixth time around being Center Circle, you ought to look around and make sure your circles aren’t drawn around yourself for no reason. Make sure you’re not the boy who cried Wolf, make sure you actually need some help instead of just wanting attention, or eventually you’ll discover you’re out of sympathy points and find that there’s no one who gives a shit. Alone in your center circle.

I need to be careful to not kick my planets out of orbit. I need those guys. They’ll forgive the first couple of solar flares, but after awhile, I’ll find only cosmic dust.