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.

Two quick things…

Before we return to our regularly scheduled sweary shenanigans and inappropriate morbid humor, I want to say two further things about assisted suicide, and then we’ll move on.

1) This is not gonna happen for me for a long long time. So don’t go writing any eulogies or shit, cause I’m still here. I’ll give y’all lots of warning if/when that happens, but for now, you fuckers are stuck with me. Swearing ALL the swears.

2) It is BEYOND fucking RIDICULOUS that the criteria to qualify for DwD does NOT include dementia. FOR FUCKS SAKE. It is patently UNFAIR that these reasoning people can’t choose their end when they start to lose their reason. The body may not be in decline, but their LIFE certainly is. They are dying. Their bodies are just going to take a bit to catch up. Let them check out with class, for fucks sake.

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.

Answers!

So I opened the floor to questions, and I got a couple. I hope you guys know you can always ask me questions and I’ll try to answer them as honestly as I can. The usual disclaimers apply – I speak for myself, not for everyone with ALS, your mileage may vary. Hit me up in comments (anonymously if you like) if you can think of anything else you’d like answers to.

Q. How does progression work? Random parts or a clear path with variable timeframe?

Everyone’s experience with ALS is different. Though according to Dr. Goslin, the rate of progression tends to be steady. If it’s a fast progression now, you can expect a rapid decline until the end. If it’s slow and steady (as mine is) it will remain that way. ALS doesn’t go in fits and starts, apparently – it’s a constant rate. I’m losing the ability to walk, but it’s not as though one day I’m going to wake up and my legs just don’t work. They’re going to fizzle out slowly.

Some people start with the speaking/swallowing difficulties, some people’s starts in the hands, some peoples’ start in the hands and feet at the same time. Some people die within months of learning something’s wrong, some people go for years before being diagnosed because they just figure they’re clumsy or getting old. This is the main reason I can’t speak for everyone with ALS. Our feelings and how we deal with the disease are incredibly varied, but nothing so varied as how the disease manifests in the first place. It’s entirely unpredictable except in how the story ends.

Q. Does it hurt? Not trying to do things but just in general?

The disease itself doesn’t hurt at all. That’s one of the things I was actually lamenting during my diagnosis – nothing hurt, so I couldn’t point to any one thing as the problem. The only pain that ever came as a result of ALS were the occasional muscle cramps in my legs, but they’re rare now that I’m taking neurontin to calm the twitches. Kneeling now hurts because there’s no longer that cushion of muscle protecting me – so my bones are pretty much pinching my skin against the floor. ow. But no, nothing hurts as a direct result of the disease. I don’t feel the neurons burning out. My only clue that it’s happening are the random fasciculations and the progressing weakness.

Q. I know you’re Christian – how does that affect your thoughts? Does it give you something to hold onto or is your faith shaken?

H’oboy. Well. I’ve always considered myself Christian in that I believe in the teachings of Christ. It boils down to – Be Kind. Take care of those who can’t take care of themselves. Believe that you, too, will be cared for. Every major religion has some variant of the Golden Rule. I was raised hardcore Evangelical Christian, and I still hold a lot of the same faith, but I don’t believe in the Bible as a literal record of events, and ..yeah. It’s complicated, and changing. I believe in God, but I don’t believe He’s necessarily involved in the minutiae of our lives. I really don’t believe He cares who we’re having sex with. I believe it is in us to be kind and rise above our animal nature, and that brings us closer to Christ, closer to being like God.

My faith (or whatever it is you want to call this) is unshaken, because I don’t think God was necessarily involved any more than God is involved in the changing of the leaves in Fall. I don’t believe that God will fix this except through the minds of brilliant scientists who will figure out a cure. I think things happen for a reason, but sometimes that reason is that you’re stupid and have made terrible life choices. And sometimes that reason is that your DNA is twisted and you were doomed from the get-go. I have ALS for a reason, and that reason is ..whatever it is that causes ALS. I don’t think I was given this disease as a challenge of faith or a chance to show grace, I think it just happened because sometimes people get ALS. We’ll figure out why some day. I’m not going to wake up magically free of ALS, and that’s okay. It’s not God’s fault. It’s not anyone’s. It’s just how the universe manifests itself.

Though I admit, I WAS cursing the universe a bit when I got shingles on top of all of this. Just a little. Cause…dang, man. Really?

Q. Are there really neat treatments upcoming that hold out some hope?

Stem cell research is going to be the key. If we fix this at all, it’s going to be through stem cell research. It’s what shows the most promise. Recent tests have allowed some early-stage ALS patients to recover a little bit of strength. And while some of that is controversial (spoiler alert: not all stem cell research involves embryos), I also believe that if the naysayers were diagnosed with ALS tomorrow, they’d probably be willing to inject fetuses straight into their spinal column if they thought it would keep them alive.

I don’t think we’ll find a cure in my lifetime – no, that’s not entirely true. We might find a cure in my lifetime, but it will never get through the FDA rigmarole in time to reach me before I die. My only hope is through participating in clinical trials, which will carry some risk, but even if that kills me, it provides a data point. Which is precious. And I really do believe we’ll figure this out. Some day ALS won’t be a death sentence, but I don’t think there’s any chance of that happening with me. And that’s okay. We’re working on it, it’s getting attention.

Q. What are your happy thoughts?

I am loved. Seriously. I am so fucking loved. It’s amazing. I would NEVER have thought in my whole life that I had this many people who cared so deeply for me. Any time this stuff gets to me, I can make myself calm down with the knowledge that there are people who would do anything to help me.

It’s a powerful thing, to know you’re not alone. And I know there are going to be days when that knowledge saves my life.