And then I waited too long…

..and the backlog of words waiting to be written backed up and I EXPLODED!

Okay, not really, but I’ve worked myself into that awful spot where updates are long overdue, but I can’t tell you about THAT because first I have to tell you about THIS, but it’s dependent on this OTHER thing for context, and I wanna talk about THIS but it needs to be a video but I really need to vlog about the cruise first, and then the wake…

And so for weeks I’ve posted nothing at all. Which is DUMB. So let me sum up some things, and then when I feel like I wanna say something, I can do that, and then fill in the back story as I can. The Cliff Notes version:

Clinic Days: Progressing as normal. Last time my breathing capacity was down a little, but it was still a strong normal. My hands continue to degrade. I made an appointment with Deb the Wicked Awesome PT who made me a Wolverine glove to hold my fingers up. I now have a wheelchair at home to get pushed around in.

Home search: Nothing. Despair.

Support Network: Lizzie is amazing and helps clean my place and I am VERY much enjoying the strengthened friendship that’s resulted out of the hangouts. She’s keen. Puce has become a freakin’ CHAMP-EE-UNNN in my life, to the point where he pushes me in my walker from the car to my desk every day. He’s amazing. Every dang day I am grateful for the people in my life who just kinda stepped into the roles I need, and I’m not at all sure what I did to deserve any of it.

Cruise: So much fun. You should do a cruise if you can.

Awake Wake: I literally don’t have the words. So many people, and so much love, and so much good food, and creativity, and hardly ANY crying, and SO MANY PEEPS OH MY GOD. My favorite part was sitting in the corner, watching all of my friends greet other mutual friends they haven’t seen in too long. It was the most uplifting thing I’ve ever experienced, and I’m so freaking grateful to everyone who came.

Vitamin shots: Don’t seem to be doing anything except make me pee pink, but I’m continuing them until next clinic day anyway.

Radicava: cautiously optimistic, but holy HELL is that expensive and complicated and..yeah. Every time I hear about it I think of Rikki-tikki-tavi.

Politics: Don’t even get me started. He wants to completely defund the ALS registry, which is the single most important tool we have to finding a cause and therefore a cure. I get angrier and more depressed with all of it every day, so I spend my days actively avoiding all of the news. It seeps in through my friends feed anyway, and I try to not be hateful and bitter. The world seems like a very ugly place right now, and I actively work to remain ignorant so that I can remain sane and functional. Bleh.

ALS Sucks: Someone else I knew with ALS died recently. I know his wife better than I knew him, and she’s an amazing person (seriously, caregivers are the unsung, underappreciated heroes of all time), but it brings the total number of people I know with ALS to….one. This is why I avoid the hell out of ALS forums. They’re seemingly all “EVERYTHING SUCKS” or “RIP So-andSo, who lost the fight with ALS today…” Meh. There’s only one cure for this disease, and it sucks.

Settling Affairs: Yeah, speaking of which I still need to finish that all up. It’s hard. I’m glad I don’t actually own anything of value.

Voice banking: Done! I have my digital voice and it is some serious Uncanny Valley stuff and I can’t wait to show it to you.

Work: I still have a job, I’m working from home two days a week now because it’s hard to do much of anything, and even getting out of bed and putting civilian clothes on and wrestling with myself to get in to work is a freakin’ challenge. But I still have to keep doing this because see: Home search.

So, that’s the quick (!) update. A lot. Realllllly need to post more. Soz. Soon. <3 I hope you're doing excellent things today.

All of My Stuff is Shit Someone’s Going to Have to Deal With

I am a very ‘stuff’ intensive person.

It’s not hoarders level, no, not quite yet, everything has a place and a reason for the most part. Except the boxes of VHS tapes out in the garage I need to go through and convert some of it to digital. The rest of those are just random comedy and shit I’ve taped over the years because I have an insane need when I like something to obsessively collect ALL OF IT. But there’s some important stuff on some of them. My 6th grade school play, videos of cast performances of Rocky Horror Picture Show. You know. Blackmail material. Important stuff. Other than that, though, I’ve got like 7 boxes of VHS tapes to toss. When I get around to sorting through it all.

Tthere’s been a lot of sorting through stuff already, but it could easily be a full time job if I let it.

A terminal diagnosis gives you a different perspective on a lot of things, it goes without saying. But one of the perspective changes that’s hit me hardest, one of the most concrete OH HEY YOU ARE REALLY GOING TO BE DEAD slaps to the face is the knowledge that someday, someone is going to have to go through all of my shit and decide what’s worth keeping.

…Not a lot.

I’ve been casting a more critical eye on my belongings lately. WHY do I have that thing. WHY do I keep those papers. What is someone going to think of when they have to sort through this box of random crafty shit. Are they even going to bother? Am I REALLY going to use this notebook of blank paper with water damage on the edges? Is anyone else going to want to? Am I going to actually make something out of these little bottles or is it taking up space? Having a suddenly finite time to get shit done forces you to narrow your perspective and see your belongings with an outsider’s eye.

So I’ve been getting rid of a lot of things, but I have to be careful that it doesn’t turn into a fatalistic FUCK IT THROW EVERYTHING AWAY IT’S ALL MEANINGLESS. Just…”This is a drawing I did in 6th grade. No one is going to care about this but me. Hell, *I* barely care about this, I haven’t even looked at it in like 20 years.” So I scan it and toss it, or just toss it. “This is a skirt I’ve meant to mend, but I know damn well I’m never gonna.” Toss. “This is a stack of books I’ll never read again.” Sell. “This is a dirty plushie that has some small significance to me but has been languishing in this box for sentimental reasons for like, ten years.” Toss.

This is all stuff I should have been thinking about, all along. A critical eye that everyone should ALWAYS have when keeping things around. I’ve collected a lot of random things with no lasting importance in the grand scheme of things, and I’ve carried them around with me for a lot of years, without ever looking at them. It’s been pretty interesting, viewing my stuff as an outside observer. “Why the FUCK did she have, like, a MILLION blank notebooks?!” “What the hell is with this little jar of cat whiskers.” “Forget the cat whiskers, why does she have a glass baby bottle full of burnt out matches?!”


I have a lot of stuff I’ve been collecting for creepy décor. Probably won’t make it to BE décor now, but maybe I can find someone who would appreciate it. I’ve been making an effort to go through all of this stuff as time permits NOW . Not only so that when I die, someone else doesn’t have to, but so that when I inevitably have to sell this house and move someplace wheelchair accessible, I don’t have to deal with it THEN either. Thinking of likely adoptees for some of this stuff, and realizing with more than a bit of sadness that some of my most awesome things mean absolutely nothing to anyone else, and will be trash.

And then there’s the dozen photo albums full of stickers. It’s an awesome and an embarrassing burden.

At what point do I stop collecting things? My collection still makes me happy, and so I still want to add to it, but there’s a gut-wrenching feeling, knowing that it’s…kinda pointless and is just going to be something someone has to deal with when I am dead. Realistically? That’s true of everything, and always HAS been. Everything you own, unless you deal with it, someone else is going to have to, when you’re dead. It puts a very somber note to material possessions.

Which does not mean I’m going to throw or give everything away while I am still alive. I like my stuff. It’s just that I’m developing a keener eye towards what is actually useless, even from an entertainment perspective. I have birthday cards from when I was a kid. Am I ever going to look at them again? No. But it feels so awful to just chuck them in the recycling bin. Those are my memories. But they’re just mine, and no one else cares, and they’re taking up space and eventually they will take up someone else’s time, needlessly.

Some days I care more about that than others.

Some days I feel like giving away everything that I can while I’m alive, to know that it was accepted and appreciated by the people I wanted to have it the most. Regardless, I want to ask people to be honest with me when I ask them, “would you like this?”. I feel obligated to do my level best to sort out these things while I’m still able to, so that no one has to deal with it when I’m gone. No fights over anything, no arguing over who has to deal with it, no resentment that X person got Y thing and you only got Z. Which is a real thing that has happened in my life before with Christmas presents and it devastated me. I’ve also had to stand by and watch relatives argue over my dead grandfather’s things. It’s a really shitty situation.

And you know, there is really no delicate way to ask someone, “when I die, is there something I own that you want?”

Who gets my drawings?

Whoever gets my computer gets it sans hard drive and that’s all there is to it, sorry. My best friend has strict orders to destroy that.

Don’t think that’s not going in my advance directive.