Meat Shells are Terribly Inconvenient.

There’s a quote floating around on the internet, that I can’t find a source for, and it makes me very happy.

“You’re a ghost driving a meat-coated skeleton made from stardust, riding a rock, hurtling through space.

Fear nothing.”

I’m not sure about the fear nothing part; there’s plenty in that idea to fear. But it is a pretty accurate description of the human condition. And I take a weird comfort in this idea. It’s the same solace I take in describing ALS’ ultimate result as ‘fully aware, trapped in a meat shell’. The body and mind are completely separate things, and it’s just my stupid body that’s failing.

My friend Sam posted this thing from tumblr on her facebook today (and here I am, blogging on a social media platform about a post on a social media platform that was originally posted on another social media platform OH MY GOD I WIN AT META) and it made me really happy. Both in the content, and the internet’s reply (sometimes I really really love the internet community), and the nerdy joy that it brings me that I UNDERSTAND THEM. And it gave me an opportunity to explain my disease in a new way.

So the original post, by user MIckeyrowan was this:

having a flesh vessel is so annoying?????? like they have to be constantly watered, they have to be in specific temperature range to be comfortable, i’ve had a headache for like seven hours and nothing i do will get rid of it,
physical forms are so inconvenient??????????????

And the internet responded:

derinthemadscientist:
I knocked mine over yesterday and scraped off some of the outer barrier and it keeps sending me really annoying warning messages about it

vincentvangozer:
blood.dll has caused an access violation exception

asksecularwitch:
I still can’t figure off how to turn off the monthly compile time. It goes for like 7 days wrecks all the system and takes so much CPU time.

tharook:
I got the wrong model, too, and there’s no returns or exchange policy. I’m trying to make do as best I can with aftermarket modifications, but even that’s a real bind. And then I have to deal with all the purists who try to tell me I should be happy with the model I was given.

There’s many more, I’ll post them after this. So now, I have geeky new language to describe ALS: “My CPU has decayed signal integrity from the core processor to motor servos; this is a known issue and there’s currently no patch.”

So, that brought me a little bit of joy. And now I present you with some other awesome ones:

theriversdaughter:
Mine has a short in the warning and alert sensors, and keeps tripping the alarm system for absolutely no reason. It’s been taken to the mechanic many times, but the best they can do is recommend daily chemical baths for the wiring to keep it from arc-faulting constantly.

fabulousworkinprogress:
My uterus keeps trying to install this shitty bloatware that comes with certain dll processes and I keep refusing the update, then it goes through the whole defrag process deleting all those files.

living400lbs:
My histamine system is faulty and triggers for no reason. I keep turning it down but I have to keep reapplying the patches daily.

and probably my favorite:

noirandchocolate:
My unit will often refuse to turn off when I’m finished using it at night. I’ll perform all the shutdown routines listed in the manual and put it in its recharge station, but it won’t power down completely and just turn off! And it’s so annoying because the darn thing supposedly “requires” at least six or seven hours off to recharge every 24-hour cycle, so I’m left with a barely-functioning meat husk during the day when I need to use it to perform my work tasks and interface with humans. Such a buggy model, this one.

and the followup gospel truth:

mega-mine-cake-kink:
Don’t even get me started!! So a whole sub routine for morning will be buggy as hell for goddamn hours if the file known as caffeine is not loaded. however you need to constant reload the file or the system slows down again. And of course if you load it to often it floods the system and you have to go through the goddamn purge process. On the subject of loading though. Beware of those files with extensions .curry and .street-kebab accidentally load those and you will be running a purge routine every goddamn 10mins.

Too private.

“I tend to be pretty private,” she told me, as we talked of grief.

“I keep that close to my chest, usually, too,” I agreed.

“But you’re pretty open, usually? You have that blog.”

“I post a lot of things people would consider private and personal, sure. But when I get really sad about my own situation, I tend to shut up and not post for awhile.”

++++++++++++++++++++++++++++++++++++++++++++++++++

So I haven’t posted for awhile. Not that things haven’t been happening. Things being thought, that I ought to write down. Feelings to document, frustrations to record. Things. But it’s hard to write, when you feel bad. There’s a bullshit self-imposed rule of “if you can’t say anything nice”, when the whole POINT of this was to record the good and bad. The funny among the fucked up, the grace between the grief, the other alliterative things that mean shit happens and sometimes it sucks and it’s all valid and okay.

There’s been a vast lack of energy, both physical and spiritual, lately. I spent the entire weekend in bed. Sleeping or playing video games. Safe to say I’m in a depressive streak, and things are hard right now, but good stuff still happens. I have a lot in my brain. Work is stressful as shit, and that’s its own post, one of many that I feel I owe you, this place, this blog, my future self. One of many. It’s harder to type and that makes me not want to do it. I am tired. I am lazy. I would rather be escaping into virtual realms, the Commonwealth, the biome I call my Minecraft home, Discworld, anywhere but here. I am squandering the time I have left and the ability I have to do things with it, and I can’t bring myself to care, most days.

But I have things to tell you. And I shall. I’m sorry to myself, and to whatever audience here, and to the universe in general for not being a diligent reporter, for not allowing myself permission to post even the bad days, when the bad days aren’t funny. It’s just easier to sleep, instead.

I have things to tell you. And I shall.

Inappropriate Friends are the Best Friends, Part 4

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

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

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

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

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

“…..What?”

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

“…And?”

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

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

He gets me.

LOLitics

A coworker is at the entrance of my cube, talking to me about politics. I hate politics, I don’t want to talk about it, I don’t want to think about it, and try to avoid them at all costs. I don’t watch the news, I don’t read news sites, I actively do not pay attention to any of that. I get more than enough from my facebook feed, thanks, and I have a policy even there of, “if your last five posts were all political, welcome to the Ignore List.”

Willful ignorance for the win, I guess? There’s that saying, “if you’re not outraged, you’re not paying attention” and it’s true, but some of us have better things to do than be outraged all the damn time. I certainly have OPINIONS about a lot of things, don’t get me wrong, but seriously shut up. You’re not saving the world with your opinions on gun control or abortion or whatever the flavor of the month at 31 Outrages is. Terrible Situation is Terrible, but sitting in your office writing vitriolic screeds and stressing about it without DOING anything about it solves NOTHING.

Ranting in your facebook does one of two things: Alienate People Who Don’t Agree With You, or Preach To The Choir. You’re not changing anyone’s minds or calling anyone to action. You’re just yelling about TERRIBLE THING with no specific call to action and no change as result, and it is actively depressing/infuriating/frustrating to read this over and over and over. I don’t give a SHIT about an article about a protest or a war or a new policy or whatever, facebook is where I go to find out how the fuck you are doing. Where you AT the protest where the cops tear-gassed the protesters? No? Then WHY ARE YOU POSTING THIS. Are you seriously expecting to sway someone’s vote with your clever little infographic about gun control? Seriously? HAHAHAHAHAHHAAHAHHAHAHAHA oh man. That’s a good one. Ok but really you know you’re not, right? And you DID run that article through Snopes or FactCheck or PolitiFact or Hoax-Slayer or something before posting it, right? And not just shared it because it agreed with you before making sure it was true? No? Sigh. Okay. Yeah. This is why we can’t have nice things, people. Check your facts or better yet, just don’t post that. Post pictures of your cats. That’s important. That actually tells me about your life. I want to know how your breakfast was, not about some philandering politician or your stance on abortion or some insipid inspirational wabbajabba picture of a sunset with a misattributed quote.

I don’t give a shit about your politics, I often like you in SPITE of them.

There was a point to this. …Where was I.

Oh right. Coworker. Cube. He’s talking about the Republican party and the possibility of Trump as president and blah blah blah, and I find myself cheerfully saying, “You know sometimes, I’m GRATEFUL that I’m checking out early so I don’t have to DEAL with this shit.”

And he gets quiet.

And that is the end of THAT conversation.

I win.

I’d name this post some kind of marijuana pun but I hate them.

Okay, peeps. Real talk. First? Any employer who may or may not be reading this should regard this post as a work of fiction or satire or something. I have never smoked pot*. I hate the smell of it, it causes migraines**. These are theoreticals and opinions and satire. As far as I care to say.

I know I’ve mentioned marijuana before, but I can’t seem to find it to link to, so I’m just going to pretend I’ve never said anything and start from the beginning. So here’s the beginning:

I have hated pot ever since I was a wee thing. (seriously, as a kid I once cried so hard I threw up and was angry at my mother for WEEKS because she smoked a joint with our neighbor) The smell of it is one of the small handful of things that will nearly ALWAYS trigger a migraine, which doesn’t help at all, but I mostly have always had an intense dislike for it because of the people I know who smoke. Who…’partake’. And they’ve ruined that word for me. I hate that the people most upfront about habitually using it are usually complete idiots. That stoner laugh, the drawn out “….whut?” Most of the people I knew while growing up who smoked pot were complete idiots, and it was not until much later in life that I learned the difference between “person who smokes pot” and “pothead”. My sole experience with the drug was a second hand high I got at a Depeche Mode concert, and that may VERY well have been endorphin and adrenaline that come naturally with a rock concert. I came home hyper and hungry. I came to know some people who could keep their act together but still smoked, but I always thought a little less of them, if I’m being perfectly honest. OK sure you can hold down a job, but how much more could you accomplish if you DIDN’T light up every night when you got home?

I’m saying, I have some prejudices.

How could I not, really? My direct experience has always been pot = migraine. Stoners = idiots.*** Oh sure, people swore up and down that pot cured cancer and AIDS and ADD and whatever other letters you wanted to throw at it. You can make hemp everything! The hemp people always struck me as trying to find a loophole to legitimize their habits, NO SERIOUSLY IT’S NOT FOR GETTING HIGH MAN IT’S FOR PAPER AND CLOTHES AND SHIT and okay also getting high because you don’t see us making the same arguments for using bamboo which ALSO does all these things plus FOOD, and collecting signatures for THAT, but hey, whatever man. I could never take any of it seriously because all information about the medicinal benefits were nothing more than anecdotal. ..Because hey, it’s pretty hard to do a legit medical study on an illegal substance, turns out.

…Okay side rant, people, because I HONESTLY, SERIOUSLY believe that a major reason why no one ever took marijuana seriously as medicine? IS BECAUSE YOU NAME YOUR STRAINS DUMB ASS THINGS LIKE CAT PISS AND PEPDAWG AND ALASKAN THUNDERFUCK. There was no medical journal out there willing to take seriously a chemical composition and therapeutic benefit breakdown comparison between Purple Urkel and Ninja Turtle. If you want to be seen as a legitimate, scientific cure, KNOCK IT OFF WITH THE SATURDAY MORNING CARTOON NAMES. No doctor is going to prescribe “2 tablets of Purple Monkey Balls”. There is probably a way to scientifically, accurately track the medicinal benefits of each strain, but you stoners made it REALLY REALLY HARD for us to see it as science with names like Romulan Cotton Candy and Skyhigh. OKAY? Ok. Also, I only made up ONE of those names****.

Anyway.

I’ve a lifelong dislike for pot, is what I’m saying. It was recently legalized for recreational use here in Oregon, and I actually think that’s marvelous for a lot of reasons. I strongly feel, that no matter what my own opinion on smoking pot might be, anyone should have a chance to use a medicine if they thought it might help. There’s been awesome articles about the benefits people have found through its use; epileptic little girls finding seizure relief, and cancer patients using it for pain management, and ADHD people using it for focus, and PTSD victims using it to quell anxiety attacks, and I think that’s awesome. I am ALL ABOUT letting people do what they feel is doing them some good, so long as it hurts no one else. People have been telling me for years and years that pot would help with my headaches, and while I declined to take up their advice, I encouraged others to do so if they thought it helped. Just don’t smoke it around me, please. I agree that it’s practically harmless, it fixes a lot of things either for real or through the placebo effect, legalizing it recovers a lot of police time pursuing people who are not actually a threat, and brings in some tax money. I don’t believe it’s truly harmless, because while doing nothing but smoking pot may not be dangerous to your health overall, it’s harmful like overindulging in ANY addictive pastime, like video games. You’re not hurting anyone, but how long has it been since you checked in on your friends? They miss you. And you are REALLY BORING to people who don’t do #hobby because that’s all you ever talk about, be it pot or Fallout 4. But I freely admit I’d MUCH rather be on the road with someone driving stoned than drunk. You don’t get stoned and go on a bender that ends with seven dead. You don’t clonk a granny over the head and steal her purse to get money for a joint, no matter what Reefer Madness told you. You don’t get stoned out of your mind and then call your ex sobbing that you two should get back together, because, like..the phone is way over there, and you’d have to get up to get it, and then press all those buttons.

So I was honestly kind of irritated when I read a lot of studies about medical marijuana doing great things for people with ALS.

I asked Dr. Goslin about it, if it would help with anxiety and the twitches and the cramping and everything, and she said, yes, it probably would, would I like a medical marijuana card? I told her I’d go do my own research and pursue it if I felt it would do me good. I did a LOT of research. I talked to a few people who used it, and tried to open my mind to the idea. While I fail to see how something known to trigger migraines could possibly help my headaches, I was at least passingly interested in the possibilities. A year passed, the data I found was inconclusive, so I let it lie.

Then I had a Really Bad Stretch. So bad I can’t even tell you about all of it; but my heart was broken by a lot of awful events conspiring to happen at once, so much drama and heartache and confusion and I really, really just wanted it to go away and let me think straight. I was back in the same dark headspace I used to get in when I self harmed; not a desire to die or disappear, just desperately needing an outlet and a calm space to sort things out. Some time to think without panicking. A friend strongly advocated for marijuana as a stress relief, and gave me strong enough testimonials that I caved and applied for the card. Because I strongly feel, that no matter what my own opinion on smoking pot might be, anyone should have a chance to use a medicine if they thought it might help.

Including me.

The card took FOREVER to get to me and cost $200. An initiative passed to legalize recreational pot here in Oregon, and it was actually in place and active only a week or so after I finally got the thing. It’s still necessary, though, because ‘recreational’ only includes the flower and seeds. No oils, tinctures, edibles, or anything, and like I said, the smell gives me migraines so I’m not smoking it ever. But I was interested in the alternatives and dipped my toe in. The first thing I bought were chocolates, I bought them from a legal dispensary in Washington that was INCREDIBLY crowded so I didn’t get a lot of time to ask the questions I had. A lot of questions. Dosage, strains, methods, I mean I knew that different strains did different things and that ‘medibles’ (seriously, stoners. “medical edibles LOL U GUIZE SO CLEVAR”) reacted differently in your body than smoking, but I needed details. I didn’t get them that day, just bought the very expensive white chocolates, and slunk away.

I made sure I had a babysitter when I tried a chocolate with 10mg in it. It tasted bad and did nothing, which wasn’t terribly surprising since I was later told that 10mg of THC is NOTHING. Another day, I tried a vaporizer with a friend who smokes but had never used a vaporizer before, and it did nothing for either of us. I tried two chocolates, another day. Felt nothing but calm, but I’d also slept all day and then soaked forever in a hot bath with a Lush bath bomb so I was pretty freakin’ relaxed already. I saved the last two and tried them another time, when work had sent me into a rage, so I knew it would be a good test. I felt nothing but calm, which could have been the chocolates, but could have also just been the time that passed once I was home from work. I was still angry as hell, but just not as energetic about it – which tends to happen with the passage of time on its own. I dwell, but I don’t tend to stew when I’m angry. So that wasn’t a particularly good test, either.

The same friend that originally testified so strongly (later jokingly called my Pusher) brought me a small assortment of ‘medibles’ (ffs) to try. These gummy robots, hard candies, a pink lemonade, and some CBD caps. CBD is the more medically useful compound in pot. I don’t want to get high, just want the medical benefits, so low THC and high CBD is what I was after. The gummy robots were super cute and there was a little diagram on the back showing which part of the robot had what kind of dosage. I tried a small piece of one of the gummy robots (his head) one night and…yeah, I got high, I guess. I was decidedly altered. I wasn’t giggly or paranoid or anything, but aware that my perceptions were altered. I opened a wordpad document and started typing something in it but stopped bothering after awhile, but the gist of it was basically “now I know why stoners talk like they do, because there’s literally no way to describe these sensations without sounding like you’re on drugs.” Even later, sober, while trying to explain the sensation to a friend, it was TOTALLY STONER SPEAK. “There was something like a core of energy in my gut, and it pulsed out in waves, and I could feel the tingling of the waves as they radiated out and off of my body like electricity.” (Um. Yeah. Shut up, stoner.) I was cognizant enough to know that social contact would probably be a bad idea, especially writing the emails I was working on to introduce myself to clinical trial coordinators, so I banned myself from social media and instead just watched television for the rest of the night, knowing that it was NOT in 3D even though it sort of looked like it. “This is probably WAY more surreal right now than the actual show is. I’ll have to rewatch this tomorrow and compare.” (it was still weird, for the record, but not nearly as bizarre as I remembered, predictably.) My body was tingly and heavy and I did not enjoy the feeling. I had to walk to the kitchen to get something and had to concentrate really hard on not falling, which might be fun for some people, but I already have real life troubles with such things so I did not need a chemical to enhance that. I wound up sort of falling at one point, very gently, and it was really hard to get back up; and even chemically altered, I had the presence of mind to realize that this would be really, horribly upsetting if I let it be, and turn into a Terrible Time, so I concentrated really hard on not thinking about it at all and just pet the cats until I felt like I could stand up again. I went straight to bed and was glad to wake up and have it gone.

I tried a hard candy, another night, and it didn’t feel like it did anything except test my powers of endurance by forcing myself to suck on an awful hard candy for 20 minutes. I tried the other part of the robot another, different night, and got REALLY altered, and my twitches got so much worse it was like having a seizure. I found I could calm the jerking by thinking about it, practically mentally commanding myself to do so, but then they’d start right back up and there wasn’t anything for it but to sleep it off. Except I couldn’t sleep because I was spasming so hard I was kicking the cats off of me and reenacting the part of Ash from the Evil Dead. GIVE ME BACK MY HAAAAAAND. It wasn’t painful at all, just completely surreal to watch my limbs thrashing about of their own accord, and a little scary. I wound up taking a video of my hand twitching, mostly to see if that was really what was happening or I was maybe just imagining things. Turns out I wasn’t. I can’t move my hand that fast if I wanted to, anymore. Maybe not even before they started losing their strength; it was seriously bizarre. But, I had another bad day and another piece of robot, so I tried it one more time and got REALLY altered and REALLY REALLY sick. I wound up in bed, in the dark, trying to be quiet and calm. I wasn’t freaking out or anything at all, I was just seriously overstimulated, and every sharp noise was a weird synaesthetic flash of light in my brain, and eventually I just barfed it all up and felt a lot better and went to sleep.

So, fuck those little robots.

Also? Fuck the taste of pot. SO GROSS. There is no way to make anything with pot in it that doesn’t taste like pot, and pot tastes AWFUL. Bleah. The pink lemonade tastes like acid and death and pot. The hard candies taste like artificial raspberry and sweet and pot and death. -15/10 DID NOT ENJOY. WILL NEVER ENJOY. Shelf that with beer and wine as Things I Do Not Like and Don’t Understand Why People Do This To Themselves On Purpose.

Bad days continued, and while I was pretty sure I hated pot forever still, I hadn’t tried any concentrates and had no idea what strains I’d actually tried so far. I knew there were LOTS of options. I finally went to a recommended dispensary with a name that was ..tolerable.

…Okay side rant number two. Dispensaries: STOP WITH THE PUN NAMES. “CannaBliss”. “Grin Reefer.” “ReLeaf”. “Urban Farmacy”. OK YES WE GET IT YOU SELL POT. IT IS LEGAL. You’re NOT CLEVER. You are making it HARDER TO TAKE THIS SHIT SERIOUSLY. I feel dumber just walking in. Again, like with the strain names, if you want to be taken seriously as medicine, maybe calling your dispensary “Fifty Shades of Green” is not the road to credibility. It drives me NUTS because only stoners think this is funny – HURR HURR “420 Collective” IS REALLY CLEVER GUISE. Only SLIGHTLY less irritating are the ones that take some aspect of pot, open a thesaurus and choose a name. “Above”. “Ascend.” “Elevated”. “Lift”. GET IT CAUSE IT’S ANOTHER WORD FOR HIGH. LIKE HOW YOU GET HIGH WHEN YOU SMOKE POT. (I can’t stand it when beauty salons do it either, for the record. “Curl up and Dye” was funny the first time I saw it, but how many “A Cut Above”s do we need, or “Hairway to Heaven”. GET OUT.) Fine, name your store something that clues people in to the nature of your business. “Holistic Remedies”. “Green Gardens”. So far “Flora” and “Bloom” are the ones I’ve found the least irritating. But really, as long as you put “Dispensary” in there, people will get it. You don’t see proper doctor clinics with names like “A Cut Above Surgery” or “Meds4U”. There is a reason for this. You are the reason no one is taking marijuana seriously as medicine. Stop it.

okay.

So I got to this recommended place, was soothed by the totally actually clinical interior, like a doctor’s waiting room, and approached the reception counter. I explained what I was after and why. Something for anxiety, maybe, but primarily an anti-seizure/relaxant, I wasn’t looking to get high. He was extremely knowledgeable, and suggested several particular strains. I told him what I’d tried, and what they did, and that I couldn’t smoke and why. He said it was no problem, they have several vaporizers possible, but the higher heat, the better the effect, but the more smell. He explained how oils work and what the naming convention was for some of the things. The oils come in a syringe, “Which sounds scary,” he told me, “but the oils are so sticky it’s really the best delivery method.”

And the whole time he’s talking and writing things down for me on this post-it note, I’m thinking, “Great! Are you gonna maybe SELL me anything?”

I told him about my experiences with medibles (guhhhhhhh), explained I wasn’t looking to get high but I wasn’t adverse to feeling some effects if the thing did good. He used the word ‘intoxicated’ instead of ‘high’ which I liked. He explained, continuing to write on the Post-It, that I would want higher CBD and low THC to avoid the intoxicating effect. I asked questions about what the oils’ availability and such was, hint hint, do you have this in stock right now? And he was oblivious to the subtlety until I finally asked, “Do you have any of this that I can actually LOOK at?”

“..Oh! Do you have a card?”

…That maybe should have been a first question, boyo. Yes, I did! He took my patient ID number, matched my card with my ID, and buzzed me into the back. The back was actually just a storefront, and not little offices at all. I have no idea why there are three doors. He pointed out the syringes, and suggested that I pipe out little dots on a piece of parchment and freeze them, and when I need a dose, just peel one off and take it like a pill. But he put the syringe back in the case. He walked over to the tinctures and pulled one out, a bottle of a strain called Harlequin. It is a glycerin base, so it will be sweet, he said, and I said, “OK I will try that” before he could put it back. And then I kind of looked around, saw the display for the “sour bhotz” and said, “Them robots, man.” He nodded and showed that the display was almost empty. “Obviously they’re very popular,” confirming that people actually do enjoy that feeling. Mystifying. They had all kinds of other medibles (whhhhhyyy) that I wouldn’t have minded looking over, but he didn’t seem inclined to show or sell. So in the end all I bought was the tincture, which was super gross and did nothing. Pot tastes like barf, so let’s make that barf SUPER SWEET and then have you hold it under your tongue for a few seconds before swallowing it okay? To make sure it’s completely warmed up and the oil spreads alllll over your mouth and makes everything taste gross for the next ten minutes and assure that you hate your life if you burp.

I wound up going back and buying a vaporizer (it is a vaporizer. It is not a vape. OH MY GOD YOU SOUND SO STUPID WHEN YOU SAY THAT. ‘Vapin!’ ‘I’m VAPIN! LOOKIT ME WITH MY VAPE’ HURR DE DURR) pen and a small assortment of different strain concentrates from a MUCH more helpful and sales-savvy assistant. No less knowledgeable and willing to educate, but much more willing to actually, you know, let me BUY something. I explained up front that I was looking to get an assortment of things to try and would come back for more of the thing that worked. I got one for anxiety, one for focus, and one that was the highest CBD concentration. I tried them all, and they stink both figuratively and literally (“It’s harmless, it’s just water vapor.” “If it were just water vapor it would be odorless. It is not. IT STINKS LIKE POT AND THAT IS HARMING ME.”). They don’t alter me or affect me in the same way as the stupid robots, which is good. But they don’t actually do much at all. They just taste bad and make me cough and then dry out my mouth really bad.

And to top it off? It doesn’t help anything. I don’t get calm, I get incapable of thought, which is frustrating. I’d actually rather be sad than frustrated, any day, and I’ll take crying because I feel powerless over getting angry because I literally can not remember the thing I was just trying to do. I don’t enjoy getting ‘high’ and I don’t see any benefit for the physical effects I’m trying to combat, so there really isn’t a point to it for me. I gave it several good tries, but pot is definitely Not For Me. I don’t see the appeal in how it makes you feel. I like not thinking about stressful things, but I don’t like being unable to think about anything at all. I don’t like having a 5 second attention span. It didn’t calm, it didn’t quiet, it just made it really hard to concentrate and impossible to do more than one thing at a time, like walk, which I already have enough problems with. I don’t enjoy feeling like my reactions are on a time delay and my density has increased a hundredfold. The muscle twitching either stays the same or strangely got so much worse. The cramping and sleeplessness and headaches are all still there.

So medical marijuana gets a big ol’ F. More power to you if it works out for you and your symptoms, I completely support you. Even if you just want to get high and watch cartoons, I support that, too, and I’m really trying hard to work on that whole ‘pot smokers are losers’ mindset from my childhood, I promise. Just don’t smoke it around me, please, because it stinks.

*This is actually technically absolutely true and did not need a qualifying statement.

**This is actually also totally true. I guess I just feel like making asterisked statements for no reason today.

***Also not helping, the fact that people who smoke pot but still have their shit together DON’T TEND TO TALK ABOUT SMOKING POT ALL THE TIME. So you don’t know they smoke and the visible perception of pot smokers as a collective is just the stupid loud people. Just like with religion and politics, really.

***Skyhigh, the LEAST RIDICULOUS ONE. Think about that, stoners. A MADE UP NAME WAS LESS SILLY.

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.

“The only thing sadder than a cripple… Is a hobbled cripple!”

Some things are bound to happen. Even if you don’t want them to, you know they’re coming. And so it is with a sense of inevitability that I write this post about the time that I fell down and actually hurt myself. I was trying to pick up a pile of laundry off the floor to carry it to my bed – THREE FEET AWAY – and went down like a rock in a small space and sprained my stupid ankle.

After every fall, every misstep that almost results in a fall, there’s a period of reflection and reconstruction of the events that led up to it. How could I have prevented that? There was no period of reflection this time, there was me, writhing in pain in the hallway screaming FUCK FUCK FUCKING FUCK OW FUCK OW OW OW OW WHAT THE FUCKING FUCKHEADED FUCKING SHIT FUCK

See also: Lalochezia.

Right about when I ran out of swear words and began repeating myself, it occurred that I’d probably done something bad this time. The swearing went on longer than usual and the pain wasn’t going away. Now the swearing and OW OW OW was joined by YOU STUPID BITCH WHY DIDN’T YOU BE MORE CAREFUL TRYING TO LIFT THE FUCKING LAUNDRY WHAT IF WE BROKE SOMETHING FUCKING OW GODDAMMIT FUCK SHIT FUCKING STUPID BITCH IT WAS THREE FUCKING FEET AWAY YOU COULDA JUST PUSHED THE FUCKING CLOTHES ACROSS THE FLOOR WHY DID YOU TRY TO PICK THEM UP HOLY FUCKING GOD OW OW OW OW FUCK

Eventually, the pain let up enough that I could breathe, and I tried propping my foot up against the wall to elevate it as I lay on the floor, whining a monotone mantra of ow ow ow ow ow the whole time, but my leg didn’t even have the strength to keep my foot up. So I did the next best thing! I curled into fetal position and sobbed my eyes out! With a whole lot of feeling sorry for myself and fuck this disease and it’s not fair and ow ow ow and do I need to go to Urgent Care or not. I eventually got myself up, found that I could in fact put pressure on it but if I turned it any way from there it was suffering city. I fetched an ice pack from the freezer, a soda, and made a little nest out of my bed with my ankle elevated on ice and cried.

It sucked a lot, is what I’m saying. It has been a super shitty stressful week, and it was just the icing. And I lost my shit for awhile, took ativan, made contingency plans to work from home the next day if I needed to, and went to sleep. Eventually. Sort of. In pieces.

So today my ankle is twice its usual size and very tender, but still has full range of motion, even if some of those motions are owwie. So I don’t believe it to be broken, so I decided I didn’t need urgent care to tell me what to do, and took anti-inflammatories, iced my ankle and elevated it and stayed off my feet as much as possible. Cause that’s what they’d say and then charge me money after costing me hours of my life and having to put on real clothes.

And despite all of the crying and hurt and bullshit, I am grateful that I had an army at my disposal at all times. Even though I never reached out to them. If I’d decided to go to the ER last night, I’d have had a handful of available rides. If I’d needed anything today, I’d have had several people willing to bring it to me. Once I announced my stupidity to Facebook, I had many offers of help. At no point did I feel helpless and alone. I was very crisis-management mode once the writhing was over, and even in the writhing I was mentally giving myself a time limit before I called someone for help, and I knew it would be there. That’s awesome and can not be understated. GO GO GODZILLA SQUAD.

I’m giving it another night, and tomorrow I’ll see if I can hobble along with the walker or something. Cause I favor my right foot when walking with the cane, so of course I hurt the left one. And walking with the cane on my left hand feels weird as it’s not my dominant hand. So maybe the walker for a bit. We’ll see. But for now, I have a nest, an ice pack, chemicals for the pain, warm cats, Good Eats on TV, and a friend bringing me dinner later. I’m sitting pretty.

Even if my ankle ain’t so pretty.

You can blame Jack for the title. It’s how he reacted when I told him what happened.

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.

Further conversations with my stupid body, 3AM edition

A combination of Fall weather finally arriving and making things colder, depression, lethargy, vacation recovery, and a grab bag of other things have seen to it that I’ve been sleeping a lot lately. Saturday was for sleeping. I was in bed Friday at 6PM, screwing around on my laptop and doing my nails, asleep probably around 10, awake and panicky at midnight, medicated and back to sleep until around 11AM. I stayed in bed and played with my phone until about 1:30, took a nap until 6. I wore myself out cleaning the cat box area (THE LITTER ROBOT IS STILL SERIOUSLY THE MOST AMAZING THING YOU GUYS) and vacuuming; emptying the litter tray and refreshing the puppy pads, then running the vacuum cleaner in a couple of spaces was the most energy I was able to put forth, and even that had me dripping in sweat and tired, I’ve been feeling very…fally? lately. Like, any minute I’m going to crash to the ground, because I’m tired and my legs aren’t holding up and my knees keep buckling and there have been a few close calls, so I’ve been very cautious and conserving my energy as much as I can. There were a few times when running the vacuum that I was leaning on the machine for support and nearly dropped a couple of times.

Yesterday though, yesterday was a normal day for the first time in foreeeever. I woke up at 10, and was actually rested. This has not happened in recent memory. I still took a nap from like 2 – 5, but it was a leisure thing and not a necessity and Sunday was otherwise a really normal energy level, productive day. It felt AMAZING. Did loads of laundry, put said laundry away, organized some stuff, put things away, was treated to a short visit by dear friends with a Hello Kitty Cafe delivery (HELLO KITTY MACARONS!), more Skyrim, showered, played with my phone some more and chatted online with friends, and was trying to sleep by 10PM.

Which is when my brain and body decided hey, fuck you. Which was exacerbated by my cat Parmesan, who is old and skinny and the room was cold, and so he insists on sleeping on my face because that’s where the warm air comes out. Which is not conducive to breathing. AT ALL. I have a fuzzy blanket that I usually wrap over him, but it had just come out of the dryer and was still a little damp, turns out, so I shoved it aside and tried to just sleep with this cat on my face and my other cat Ianto trying to nuzzle me too and scratching at the covers to come under but he doesn’t really want to come under the blankets, he wants to stand there half covered while I skritch his head and the moment I stop he will go away. So while I have one cat pawing at me, another dancing on my face with his icy little paws, one blanket short in a cold room, the noise of my upstairs neighbors doing laundry, I somehow managed to fall asleep around 11.

At midnight, I woke suddenly out of a dead sleep. Which is a thing I’ve been doing lately, and it sucks a lot. Like, solid peaceful sleep and then an hour later OH HEY YOU ARE SUDDENLY AWAKE AND YOUR HEART RATE IS OUT OF CONTROL AND YOU DON’T KNOW WHY! WHEEEEE! WAS IT A DREAM? WAS THERE A NOISE? WE WILL NEVER KNOW! HAVE FUN CALMING DOWN AND GETTING BACK TO SLEEP!

My heart is pounding and I’m cold. I want another blanket.

good luck getting up loser

Getting out of bed is becoming a Herculean task, and not because I just don’t wanna. Physically pulling myself out of bed is an effort, which is made worse because I sleep with body pillows and cats. I mean, really, my bed is ridiculous. And comfortable as hell. There’s half of it covered with a ginormous stuffed squid and a cat bed with a heating pad under it, and then a body pillow dividing my side from the squid side, and then a reverse moat of pillows shoring up the other side, so I’m in a sort of delightful pillowy trench when I sleep, with a weighted blanket over my legs. So if I want to get up, not only do I have to dislodge a cat who WILL NOT GET OFF OF ME, I have to wiggle away from the weighted blanket, toss the covers off of me while Parmesan keeps trying to get back on me, and remove the barrier pillow like some velvet rope allowing me exclusive access to Out Of Bed, swinging my legs over the side and lifting my body up by gripping the side of the mattress and pulling. It’s ridiculous, and I’m getting a new bed in January that is awesome and adjustable. But yeah, it’s a Whole Thing, getting out of bed.

don’t fall down LOL

Well that’s kind of up to Body, now. It’s been a jerk lately what with the knee buckling and not being able to vacuum one stupid room without leaning on walls. OK. Mission accomplished, blanket retrieved (mmmm fuzzy) and OK GOD PARM GIVE ME A MINUTE TO SETTLE IN. Ok. Sleeps now.

1AM: twitch! twitch! your arm is twitchy! ha ha ha! and your hand! twitch! Twitch! Isn’t this fun! It’s like being poked with a stick from the inside!

2AM: hey. hey. hey.

What?

Your foot itches. Like, REALLY BAD.

Goddammit. Who cares. Sleep.

Itchy! We’re SUPER ITCHY! itchy itchy itchy itchy itchy!

OH MY GOD. FINE. *scratch*

Itchy! itchy itchy itchy itchy itchy!

*scratches forever*

OW OW OW OW OW YOU ARE BLEEDING WHAT THE HELL!! STOP! WHAT IS WRONG WITH YOU.

Oh my god, body, shut up. Stop itching. Sleep!

maybe you should get that checked out by a doctor cause your foot’s been itchy a lot

It is WINTER. My skin is DRY. WHATEVER. SHUT UP. SLEEP.

2:45: dry skin doesn’t come with little bitty blisters, just sayin’

I do not want a doctor visit. I have had enough of the doctor visits for all time. Shut up.

itchy itchy

3:30AM: cramps! crampy crampy cramps! All down your arm! NO DON’T STRETCH YOUR HAND BACK LIKE THAT the OT said you’ll get claw hands if you overextend your hands like that, make a fist!

But that doesn’t stop the cramping at all and it just hurts more!

oh my god we’re going to have claw hands forever in no time you can’t even open a packet of chips anymore, you have to make a claw hand and tear it with your knuckles i wonder how long we have left of opening cat food cans our cats are gonna starve oh no

Fuck off, brain, it’s fine, they make automatic can openers you know. OK. Hands stopped cramping. *yaaaaawwwn*OWQOWOWOWOWOW WHAT THE ACTUAL FUCK WHY DO I GET CRAMPS IN MY SHOULDERS WHEN I YAWN WITH MY HEAD TURNED. WHAT THE FUCK IS UP WITH THAT. OW OW OW OW WHY IS THIS HAPPENING.

I dunno. Fucking ALS, man.

your muscles are dying and it hurts because you’re dying

SLEEP. OH MY GOD.

4AM: hey remember when we didn’t have to lean our head against the bathroom stall to pull our pants up that was pretty weird huh how you could just stand up without even thinking about it

Go to sleep, brain.

no but seriously we can’t even stand up in the braces anymore we have to balance on something that is some fucked up shit i wonder when the chair will happen

4:15AM: we are going to have to get some help cleaning the apartment because that is ridiculous and out of control i mean do we even need to live in a space bigger than this because we can’t even manage this space as it is

FUCKING SLEEP. JUST LET ME SLEEP.

Let’s take some Ambien!

One, that’s a stupid idea because it’s way too late. Two, we don’t have any more.

shit. ok. Well we can fall asleep without it. This bed is comfy, and Parm has stopped dancing around.

I can’t wait for the new bed.

we don’t need a king sized new bed because no one is going to sleep with us ever again

MOTHERFUCKER.

haha you should post about all of that and call it tmi train to traumatown or something

My love life or lack thereof is not something I want to talk about on the blog.

why not people want to know what kind of sex lives dying people have i’m sure

THERE IS NOTHING TO TALK ABOUT.

and that’s the title right there

4:45AM: hey the inside of your leg itches now. scratch it. A lot. HEY OW THAT IS TOO MUCH.

5AM: *Molly decides it’s Time For Love. She does this thing where she reaches out and just puts her paw on my mouth. And then ducks out of the way when I try to pet her. It’s cute as hell but I hate this game*

5:30AM: Hey guys would now be a bad time to have a really nasty headache?

YES.

yes

TOO BAD BECAUSE HERE WE GO!

we’ve been having a lot of these i wonder if it’s a tumor

NO IT IS JUST BECAUSE YOU WON’T SHUT THE FUCK UP AND LET ME SLEEP. SLEEP IS A THING WE SHOULD BE DOING.

6AM: *Parmesan decides to tell me he’s hungry, leaves to potty, and then comes back with more Dance of the Icy Toes on Your Face*

6:45: Well I am awake. And I do not want to be. I wonder if my alarm is going to go off soon. Let’s see…Yep. 5 minutes. FUCK.

*Ianto finds a plastic bag and starts playing with it*

I HATE EVERYTHING.

Grieving

It occurs to me, and was suggested by my shrink as well, that I’m in a slump because I’m grieving. Mourning the loss of my ability, grieving the life I don’t get to have. It’s not so much a depression as it is going through one of the stages of loss.

Today I came across this link:

What you say vs what grief-stricken people hear

And it’s all truth, all of it. And I’ve heard a lot of these, and God help me I’ve said some of them. I’ve filed it away in my ALS bookmark folder, but it occurs to me that I should probably have a link page on this blog, for articles that have explained things better than I could.

Anyway, there’s that.

Rainbows and Rememberances

It’s been an introspective week, monitoring my stress levels and emotional energy and seeing where I’m at, really. Looking at that last entry, I’m baffled at the strength of my rage over that image. It’s certainly infuriating, and something I feel very strongly about, but the instant passion of my anger isn’t something that’s happened before. Looking at it now, it angers me, but it’s nowhere near the level of pissing me off that it was before. I don’t fully understand why it affected me so strongly, so instantly, and so darkly.

Something for my therapist and I to work on.

Today I found a link on my Facebook feed to a blog post about my friend with ALS who chose to end her life. It is a photographer who connected with her and documented the end of her life, the days leading up to and the actual end. Llewellyn Gannon’s photographs are beautiful, personal, and intimate. Her story gave me closure I didn’t have before, to know exactly how things happened, something more than a final farewell post from my friend on Facebook.

She chose to die surrounded by her loved ones on a beautiful April afternoon. I can’t think of a better way to tell her story, and to show why Death with Dignity is so important, than Llewellyn already has with her pictures and her words. So I will simply link it here, and warn you that there is death, and beauty, and nakedness, and fragility, and love, and power in these images. Proceed with an open heart.

http://www.llewellyngannon.com/she-had-the-right-to-die-1/

Thank you, Sherrie, for showing me the way, and thank you, Llewellyn, for your art and your love and your generosity.

Not even going to mince words here.

Fuck everything about this image. Fuck the message it conveys, fuck the people who made it, fuck the president of the stupid fucking website it came from.

suffering is not beautiful
suffering is not beautiful

I’ve ranted about this before. And I will again. Because every time I hear something like this, every time I see something like this, I am filled with a rage indescribable in its intensity. I am sitting here, sobbing, because I’m angry. Because I’m afraid of someone thinking they have the power to make this decision on my behalf. And because I can’t make them understand. Short of committing an act of extreme violence or wishing something horrible to happen to a loved one to present them with the opportunity to reconsider their opinion, I am completely unable to make them understand how fucking HATEFUL this is. I want you to look at a dying woman with inoperable cancer and tell her how lucky she is to participate in the passion of Jesus Christ.

In my rage, I typed, “Let me stick a knife in your guts and then while your stomach acid digests you from the inside out, you can tell me how beautiful your suffering is.”

There is no grace, no beauty, and no “opportunity” inherent in terminal disease. There is nothing beautiful about starving to death because you’re unable to eat. There’s nothing graceful about shitting your bed every day. There’s no opportunity to be found while trapped in a shell of meat you’re unable to control, no opportunity when you’re in a hospital bed wracked with pain that the strongest drugs can’t touch, no opportunity while your memories and self slip away until you’re nothing but a meat robot that looks like someone your friends and relatives used to love.

We FIND grace, beauty, and opportunity in dying because we must. Because we have no choice but to laugh at pain, to smile at death, and to accept. Because we can not fathom a world in which suffering is for nothing and pain has no reason or purpose. And when all hope for life is lost, we find a new hope in allowing an end to the torment. In accepting our own death, at last, we find grace in deciding when your limit is reached, beauty in allowing the suffering to end, and opportunity to end things on your own terms, in your own way, in your own time.

Enjoy the life you live, that you are allowed to have such a hateful opinion because you have no idea what it’s like to be close to someone who wants nothing more than a quick end to their inevitable, pointless suffering. Praise Jesus that you don’t have the opportunity to make this decision for yourself because you’ve still got a life ahead of you. And enjoy that you have the opportunity to think you are entitled to make this decision for others.

Because you don’t.

You really fucking don’t.

Betrayal

I’m not sure it’s possible to put into words how it feels when your own body betrays you. It’s like Lemony Snicket said about the loss of a loved one: “‘If you have ever lost a loved one, then you know exactly how it feels. And if you have not, then you cannot possibly imagine it.” If you’ve had your body just stop working the way it ought, you know how it feels. And if you haven’t? You can’t possibly imagine it. I can’t properly convey the complicated feelings it invokes. But it’s not gonna stop me from trying.

So.

Falling down.

I’m becoming good at it. By which I mean, I haven’t broken anything yet!

They come with no warning. There’s no preparing, there’s no prevention except possibly living in a bubble and/or strapping in to a wheelchair already/never doing anything ever. One leg or another just suddenly says NOPE and then I’m on the ground. It happened today while I was walking to the title office to sign over my house. I was walking slowly, I had my cane, I was watching for uneven sidewalks, but I was just …on the ground suddenly. There is a split second of OH SHIT I AM ABOUT TO FALL and then gravity. There’s nothing you can do about it. I scraped my knee a bit, wrenched my ankle a little because it’s a whiny bitch that can’t do its job right, and roughed up my palm, but it didn’t really hurt. I managed, in my wobbly goose ascent, to mostly land on my butt. There were no witnesses.

The WORST part was trying to get the hell back up. The cane was mostly useless, I need two hands to haul myself up anymore. I gave it a couple tries, like a newborn deer trying its legs out for the first time, but SCREW those little baby deer, man, they got FOUR legs and I only got two that don’t work. I sat/knelt on the sidewalk for a minute, surveying my surroundings, trying to figure out how I was gonna do this. To my left, shrubbery and then a little steel fence. The fence is perfect, but the shrubbery is an obstacle. To my right, freshly watered grass and a tree. I sacrificed my clean pants and opted for the slightly muddy track to the tree. Kneeling in the dirt, I planted my heels against the sidewalk and kinda pushed myself up against the tree. Once I got back to my feet, I was fine.

There wasn’t a lot of angst involved in the process. Just quick thinking and scheming and logistics. The thinking/feeling comes AFTER I’ve solved the immediate problem. And my thought process was almost entirely:

WHAT THE SHITTING FUCK, BODY?! I THOUGHT WE WERE A GODDAMNED TEAM. WHAT IS THIS RANDOMLY DROPPING MY ASS ON TO THE SIDEWALK BULLSHIT?! DO YOU WANT ICE CREAM? ARE YOU BLACKMAILING ME FOR ICE CREAM? WELL GUESS WHAT, SHITHEAD, WE GOTTA WALK TO THE STORE FOR THAT. AND THAT MEANS NOT DROPPING US ON THE SIDEWALK FOR NO FUCKING REASON.

I’m trying, I really am, my body says back. It’s just hard. Everything is so much harder than it used to be.

YEAH OKAY I GIVE YOU THAT I MEAN FUCK WE ARE SWEATING BUCKETS HERE FROM JUST WALKING TWO BLOCKS EVEN IF IT WASN’T ASININELY HOT OUT ALREADY. BUT FUCK, MAN, COULDN’T YOU HAVE DROPPED US SOMEWHERE I COULD GET UP WITHOUT GETTING OUR PANTS MUDDY?

You have as much warning as I do. I’m sorry. The last few weeks have been rough, maybe we could take it easier for a little bit?

WELL SURE I WOULD REALLY LIKE THAT, BUT WE HAVE TO DO THIS ONE THING TODAY. WE HAVE TO DO THIS AND THEN WE WILL BE DONE WITH THE HOUSE WITH THE STAIRS FOREVER.

…Ugh. Stairs. I’m so glad we’re done with those.

WORD. AND ANYWAY DIDN’T WE GET LIKE, ALLLLLL THE SLEEP ON MONDAY?

We did? But I don’t feel rested at all. You’ll have to take that up with Brain.

hey look dudes it’s been a rough coupla weeks a’ight i’m having a hard time dealing with all this at once so maybe just back off okay

WELL NO SHIT IT’S BEEN ROUGH, YOU WON’T SHUT UP. IF YOU’D JUST LET US GET THROUGH THIS STUFF MAYBE WE COULD NOT SUCK SO BAD AT LIFE AND FALL AND SHIT.

Yeah!

hey fuck you body you’re the problem in the first place you know if you weren’t killing us all by deciding to shut down then there would be no stress over house sales and we would not have fallen probably i’m just saying and we could stay in the zombie tramp house cause we like that place but no you can’t even get up the stairs without sweating like a little bitch

SHE HAS A POINT.

Fuck you both, alright? Can we just get to the signing so we can get on with the day?

WELL I DON’T KNOW, BODY. THAT IS KIND OF UP TO YOU.

Oh. Right.

hahah fuck you loser

OKAY LET’S DO THIS, OKAY. AND BODY, MAYBE YOU CAN STOP DUMPING US ON THE SIDEWALKS SO MUCH.

not to be a dick or anything but maybe we should get an actual walker so if this happens again we can get up off the ground easier and maybe it won’t happen so much cause we’ll be more stable and stuff

…YEAH. YOU’RE PROBABLY RIGHT. FUCK. WELL LET’S JUST GET THROUGH THIS SIGNING OKAY AND THEN WE CAN DEAL WITH THAT.

ok man whatever hey body you ready to do this shit

Yeah. Hey, sorry. I mean…I really am trying. But everything’s so much harder, you know? I’m sorry this sucks so bad. I’m trying.

YEAH. I KNOW. I’M SORRY FOR YELLING..I MEAN, I’m sorry for yelling. We’ve been dealt a shit hand and I need to be nicer to you. I’m sorry. We’ll get through this. I know you don’t mean to be unreliable. I mean, you’re what gets bruised and scraped up after all. I just get embarrassed.

and you know uh also reminded that we’re gonna die sooner than later in a pretty shitty way but maybe that’s just me cause i mean a fall is a pretty clear indicator of decline and stuff but hey

Okay yeah, that too, but that comes later. Usually. But of course now that you’ve brought it up. Fuck. Yeah. I guess I am falling more, lately. They’ve already asked if I want a chair but I ..I just don’t think I’m ready for it, I mean I thought I was getting around okay and so far nothing really bad has happened when we fell, besides freaking out bystanders.

…dick move, brain.

just saying

We hate that phrase, brain, and you know it. It makes us sound like a complete tool. You could replace ‘just saying’ with ‘I’m an asshole’ and still convey the exact same message.

Okay, you two. Fuck it. Let’s go sign away our dream house.

Ok. I’ll get us there. Just go slow.

hey though seriously you know we’re gonna be a’ight though, right cause i mean we’re doing good all things considered and we have peeps at our back and it’s gonna be okay

Yeah. I know. This sale happened quickly, for much more than we thought we’d get, we had so so many friends show up to help, and Justin did all the post work so we didn’t have to. Seriously we’re pretty goddamned lucky, all things considered. Let’s go sign some paperwork.

Can we get ice cream afterwards?

fuck yeah ice cream

Hell yes we can. Let’s do this shit.

Moved

Last Saturday, the hottest day of the year so far, I moved from the Zombie Tramp House to my 2 bedroom, 1 bath apartment. The Zombie Halfway House of Ill-Repute.*

I had a whole gaggle of people show up to help. I was as prepared (stuff-wise) as I could possibly be for the event, disease and time permitting. Though still not as prepared as I’d have liked, I’ll grant you. I have a personal pet peeve about showing up to help someone move and they’re not even ready to do this thing. Like…I’ve had to do dishes, then pack the dishes, then move the dishes. YOU KNOW THIS EVENT IS COMING UP. PUT YOUR SHIT IN BOXES. IT MAKES IT EASIER AND HELPS YOUR SHIT NOT TO GET BROKEN. Some last minute things and cleanup is inevitable, but OH MY GOD PEOPLE WHY IS YOUR CLOTHING NOT IN BOXES YET. I try really, really hard to not be that person. So not only was most of my stuff in boxes, it was pushed out in to the hallway when I could, to make maneuvering as quick as possible.

And it worked! The guys (and gal) had everything in the driveway and front room, ready to rock, by the time we got back with the truck. I had a lot of friends work hard in stupid heat, and I was done in record time. I got the truck at 10:30, it was back to the U-Haul before 3. One last round to get the cats and all my groceries, and then I was all moved! With an hour to spare to get ready to go see Eddie Izzard perform (PROTIP: GO SEE EDDIE IZZARD PERFORM. HE IS A MAGICAL HUMAN BEING MADE OF UNICORN RAINBOWS AND SARCASM).

And Sunday, I was alone in my new apartment.

…which was the problem.

I had been frantically preparing for this move for a few weeks. As much to not be that person, as to keep my brain busy. Don’t think about it. Don’t think about the house being sold. Don’t think of your dream home in someone else’s hands. Don’t think about this being the first major loss to ALS. Don’t think about the sheer magnitude of work that’s going to need doing to find the next place. Don’t think about THAT place as temporary, too. Don’t think about this being the last Saturday you will ever sleep in at the house you own. Don’t think about this being the last time you’ll have to clean your kitchen floor. Don’t think about this being the last shower in a house you own. Don’t think about it. Don’t think. Don’t.

Sunday, I crashed. Left to my own devices, and with sweltering heat besides, I slept a lot. I went out for brunch with a friend, with the intention of going out and running errands and buying things that I needed for the new space, but found myself falling asleep at the table when he went to the restroom. He brought me back to the apartment, and I slept some more. I moved some furniture around, hooked up my TV and made my bed, and slept.

I called off work Monday. “I wrecked myself,” I told my coworkers in an email, “clearly I should have chiggity-checked myself.” And then I slept. I woke around 11AM, answered an email from my realtor, rolled over, and slept. 4PM I woke, with the intention of putting my PC together, and stared at my desk for 10 minutes before just sort of…collapsing out of my chair in to a heap on the office floor and lying there for probably twenty minutes, just staring at the wall. I went back to bed. 7PM I woke up, used the bathroom, fed the cats, unpacked my socks and underwear, and went back to bed. I just had no power to do anything else.

I’m not stupid, I know what depression is. And this? This is it. After all of everything, and a REALLY shitty week last week, I finally crashed and depression grabbed me by the jugular and shook hard. And I bled out and slept.

It’s still there, very much, but I managed to get to work today and do some things. My body is so fucking TIRED but my mind is going a million miles a minute. The sale is not quite final, there’s last-minute fuckery going on. I’m not quite out of the house yet, there was still some storage stuff and a couple of fans and cleaning materials, and then I have to clean everything up to make it presentable to its new owners, just as I’d wanted it presented to me but got a filthy house full of broken and useless shit instead. So much unpacking to do before this apartment is even navigable, much less livable. And so much to do after that before it’s mine. I have medical forms to fill out and new bills to pay and addresses to change. This afternoon, sitting at my desk at work, I cried, overwhelmed at how much was left, how much I had to do, and wishing someone would just fucking DO it for me.

I got a voice mail from some inspection company to reschedule an inspection I didn’t even know was happening at my house. That I still own. They’re doing work on the Zombie House to prep it for the final sale, now, and apparently the buying broker doesn’t think it’s necessary to actually let the owner of the house know that strangers are going to be there, working. I chatted up Justin, the Wunderbruder, and asked him when he was free to help me clear out the rest of the stuff at my house, to make the last storage run. He said he’d already moved all the straggler stuff into the garage, and just needed to sweep it out.

I said he was amazing, and he said Nope. Just a crazy white guy.

I told him it sounded like he had it mostly sorted out, and asked if he needed me; he said, “My thought was to bring to your place what goes there, get the storage key and code, stop back by the old house and get the remaining stuff out of the garage.”

And just like that, my brother had already sorted my shit and had a plan and I didn’t have to do ANYTHING.

“That way,” he said, “you can focus your energy on your new place.”

And I fucking cried. Totally lost my shit at my desk in front of my Sea-Monkeys and everything. Because he was an answer to my desperate prayer. I didn’t have to do anything. I didn’t have to ask. And I can’t even tell you how much that allowed me to just…fucking…BREATHE. For a minute. For a couple of minutes.

He has my back. I never doubted this. All of my friends have my back. I have never doubted this either, though this weekend was serious and hardcore proof. But to have him here, to have him step up and just…fuck. Just. Fuck. Without even….fuck. I can’t even tell you. Grateful. SO fucking grateful. He quiets my brain and I know I’m taken care of. And every time I tell him he’s amazing, he says, “Nope.” But he lies. In my darkest moments, I know I can pull through this because of the love of the people surrounding me. I don’t know what I did to deserve this much light, and this much love, and just..fuck. Yeah. So much love. And gratitude. And just…fuck. All of it. Everything.

Sometimes angels are real. Even if they used to punch you in the head when you were kids.

*That’s from a Dresden Dolls lyric. I’m not that clever.

Phrasing

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

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

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

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

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

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

“….No. No you did not,” he conceded.

Sometimes it’s just in how you phrase things.

Taking a Joke

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

I laughed and told him I was good, him?

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

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

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

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

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

Complicated

“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s, and the other was knowing I had Alzheimer’s.” -Terry Pratchett

“Complicated.”

It’s become my go-to phrase when people ask how I’m doing. “Life is complicated.” Check off that box on Facebook, I am officially in a relationship with ALS and It’s Complicated.

Nothing is simple. Everything is terrible, and everything is wonderful. I am cursed and blessed. And everything is complicated. I have, as the late and very great Sir Terry Pratchett said, two diseases. Two minds. The ALS mind and the Knowing I Have ALS Mind. I call them Future and Fatality. They argue constantly over everything I do, every plan I make is scrutinized by both sides, every human interaction is watched with both minds. Future is all about the practicality of the day to day, maintaining a sense of normal through all of this chaos. Fatality is about the hard reality that my time is very much abbreviated and some allowances must be made. Future is the one saying I have to work until I can’t, so as to prolong the quality of my life and finances for as long as possible. Fatality is the one saying FUCK THIS, we are DYING, who the fuck wants to work until all quality of life is gone?! Let’s spend our money making the last days AWESOME. Future says, yeah, but we still have to go to fucking work tomorrow, you moron. Disney World souvenirs don’t buy themselves.

They’re both right.

…It’s complicated.

There is definitely some sense of maintenance of the status quo that’s necessary. Continuing to work not only provides a stronger income than I’ll get on disability, but it’s feeding me a sense of normality, and there’s a great comfort in the routine. I can handle this. Yes. I’m dying. But there’s still work to be done. The floors still need swept, the cats need feeding, and while I’d like to do nothing but sleep, that’s not going to help anything. I can continue because I must, life is moving and so I, too, have to continue to move. Acknowledge that I am not dead yet.

There are definitely concessions that need to be made. Considerations to signing a 30 year mortgage that I know goddamned well I’m not going to see the end of. Allowances to make life fun while I still have the ability to participate. Plans to make so that memories are made and things don’t get left undone. Write your fucking will. Go ahead and spend some money on stupid things because I know in my heart that it doesn’t even matter. Make myself as happy as I can, while I can. Acknowledge that I am not dead yet, but WILL be.

Their key arguing lately has been about living situations. It’s amazing what will trigger me and what won’t, and unfortunately I never know until it happens. I can brace myself for things I think will be problematic, but sometimes they aren’t. Sometimes it’s the stupidest shit that trips me up. And it changes from day to day. Some days I think living with Danielle will be just fine, and some days I think I will do anything within my power to live alone until I absolutely can’t. It’s not about living with her, it’s about living with ANYONE. Some days I accept financial advice with grace, and some days it’s FUCK YOU I KNOW HOW TO SPEND MY FUCKING MONEY LIKE A MOTHERFUCKING ADULT. I HAVE GOTTEN THIS FAR, YOU KNOW. I AM NOT STUPID. Anger comes up unexpectedly, avoidance gets triggered, there are hurt feelings and tears and anger and misunderstandings, and later you sort through it all and you don’t know what happened, even after.

My main babe and I had a huge thing last week. I wouldn’t call it a fight. It was a..surprise boundary test that went very poorly. Plans kind of got put on hold, and I wound up making a rash concession that I had to withdraw and I feel fucking awful about it. Lines were drawn. Many many tears were shed and for a few days there, ativan was popped like candy to try to stave off the panic attacks that just kept coming. It cemented our need for couples counseling. It brought up a lot of good questions. It hurt a lot of feelings. I really, really can’t accept help gracefully and need to work on that. I need to draw lines and feel comfortable, as the center circle, maintaining them. Even if I’m wrong, I’m in charge of my own care. And even if I’m right, other peoples’ opinions are valid. Even if I choose to ignore them in favor of what I want. And a lot of times, I don’t know what the fuck I want.

It was complicated.

We’re still okay, of course, we love each other to pieces and that’s never going to change. It was a surprisingly brutal and hurtful exploration of caregiver/cared-for relationships and I did not like it one bit. And it’s going to continue to happen, and we’re both going to get stronger for it, and it’s going to fucking SUCK while it happens. I hate making her life hard. But I can’t help but do so. Fucking ALS.

I wound up looking for, and finding, an apartment of my own in the interim. My house closes on the 6th of July, but the housing market is extraordinarily chaotic right now, so finding another place to buy is impossible. Especially when I don’t even know what the fuck I’m LOOKING for, and things I am okay with on paper suddenly turn in to panic-inducing dealbreakers. So I am going to live in an apartment, and continue to be alone while I can, and get through life with my best babe and my awesome planets in orbit as best as we can manage. Looking for an apartment is always shitty, and right now rents are INSANE – I wound up accepting an apartment that is 2 bedroom and less than half the size of my house with 6 square feet of patio and a tiny kitchen for $50 less than my goddamned mortgage. And I’m having a really hard time with it. I sit here, typing this, looking out at my amazing back yard that will be someone else’s in a month’s time. I walk the floors I installed myself, I sleep in the room I had not even finished carving out for myself, I sign a lease with all of these rules and regulations that being a homeowner just didn’t have. And it’s hard. I’m glad I found a place and have a place to land, but losing this dream of mine is hard. I’m grateful the work is lessened, happy to have less space to maintain in my lesser state, but goddammit this was MY HOUSE. Future is happy that I’m being so practical about it and is planning the move, and Fatality is punching holes in things when she’s not crying her eyes out.

It’s complicated.

Yesterday we moved all of the extraneous stuff that had been taken down for staging, all of my books and DVDs and winter clothes and decorations and baking gear. We put it in storage. It was a really hot day and we all sweated a lot. The heat kept my mind from wondering if I’ll ever unpack some of these boxes. My ability is waning every day, and the longer I wait to find my proper space, the less power I will have to make it my own. I sacrifice my future nesting to further my independence today. And the weekend was a constant reminder of my lessening ability. My handwriting, as I filled out the lease paperwork, was atrocious. My hands are suffering and I am trying desperately not to just freak the fuck out all day, every day. My stupid feet grew wrong and I’ve got nasty bunions on both my feet, and because of the muscle loss, the bone is barely covered with a little bit of skin and it rubs and pinches and is excruciating no matter what shoes I wear – but the only real fix is surgery, and do I seriously want to give up even MORE mobility to get it corrected? Every movement costs more energy than ever before, and even though I wasn’t allowed to move boxes, I am physically DONE from this weekend. DONE DONE DONE. I am tired and sad and grateful – so fucking grateful – to my friends and brother for coming to my rescue on a miserable day. I put them all through a rough day, and they loved me enough to stay. And though I was grieving, I was grateful.

Future is kind of pissed off that I spent so much money for the lease and renting storage space, because that’s money we could be putting away, and it’s really impractical when I know I’m just going to have to give in eventually anyway. Fatality is flipping her the bird and patting my head and telling me it’s going to be alright even though we both know she’s lying. Usually I side with Future, but right now she can fuck off. I have to leave this house that I love, and it’s cruel that it’s so much work to make that happen. Fatality knows we have people who will help and just chill the fuck out and maybe play some video games tonight instead of worrying about it.

I guess this post kind of wandered all over the place. Sorry. My brain is full, I am mourning my loss of independence even as I struggle stupidly to hang on to a shred of it at great expense, I am obsessing over every detail even as I am actively avoiding thinking about any of it. And hopefully figure out the fine line between standing up for what I want and deciding my own fate, and being a goddamned idiot who needs to admit that she’s not as strong as she wants to be. To learn to accept help gratefully while still asserting control over what help I accept. Stubbornness versus weakness, and strength perceived as stubbornness versus self delusion perceived as assertion. And I usually can’t even tell which is which.

All my life, and now so more than ever, I am very, very complicated.

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.

Controversy and Community

I attended a symposium on ALS research today. As a result, my brain’s kinda full. Full of information, full of renewed energy to be a part of the solution, full of the obligatory introspection.

Oh, introspection. The knee-jerk “how does this all affect me” reaction to Serious Things.

So I apologize if this point is disjointed. My brain is random today and I’d really like to write up a full thing about the symposium and everything involved with it, I know that I probably won’t be arsed to do it. So instead, I’ma just barftype what’s on my mind. You’re warned. Two things come to mind, though, two main ideas that went through my brain repeatedly as I listened to three very, very smart people talk about advocacy, research, and a promising drug therapy, in their turns.

One? Thank god for science. Jeebus Christmastime flapjacks. The third speaker, specially, spoke about laboratory mice and their contributions, and the second spoke about stem cell therapy involving foetal spinal stem cells. Both highly controversial. Live animals, dead babies. Dead *potential* babies, I suppose, depending on your beliefs and politics. I don’t care to get into that. What I DO care about is how fucking USEFUL these research methods are, how sometimes really horrible things produce really amazing and life changing things, and how every day those decisions must be reevaluated. “Sacrifices must be made” is such simplistic bullshit, but I can not fathom how we’d get on without some of the amazing research and therapies and information that comes out of doing things not everyone agrees with.

I firmly believe that even the most staunch OMG DED BABIZ U MURDRER SINETISTS BASTURDS protester, if diagnosed with fast progressing ALS and told “there is promising research that may lead to a halt or reversal in your symptoms” will probably suddenly think that well, okay, maybe just ONE dead baby. That would be okay. One dozen babies in my spine to keep me walking and alive suddenly doesn’t seem so bad, I mean…Just as “NO YOU MUST LIVE WITH WHAT GOD GAVE TO YOU” might think differently about assisted dying. Until you are personally affected, until the decision could conceivably have some import to you personally, your opinion doesn’t carry much weight. You really, really don’t know, CAN’T know, what you really believe until it’s challenged and you face some really fucked up choices. While you’re safe from the consequences of that decision, you probably shouldn’t be allowed to make decisions for people who ARE affected. I’m looking at you, old white guys making reproductive rights decisions for women. And you, PETA person. If your kid had cancer, and I told you that 2000 mice have to die in order to give your kid a chance to live? I bet you’d be suddenly less enamored of mousey rights. Maybe skip the hypotheticals and ask people who actually DEAL with the consequence.

*stepping off the soap box*

Oh, idea one point five – saint preserve us from everyone who has “read an article”. Especially off of the internet. You guys pipe down, too. The three panelists do this for a living. They’ve probably read that article. There’s a reason it’s not called out in the slides.

Point two, and the main one, is amazement at the sense of community with ALS peeps. I have met, and kept in touch with, and care about, people I’d never in my life have met otherwise. I’m antisocial (despite what Danielle says (or at least highly socially avoidant)) and it was a bit weird to come to the symposium today and know some of the people there. Simply because we’ve been similarly touched by a disease. Nothing else in common. Just..yeah, I have this disease too, ain’t it shit? Diagnosis comes with an education, and ALS particularly comes with a community. People I see so infrequently, and yet we have something that connects us on a level that no one else could possibly share.

I learned today that a disease is considered “rare” if less than 200,000 Americans have it. The number thrown around for ALS is usually 30,000, but I also learned today that the ALS registry puts it at more like 12,000. That’s really not many. My employer has 17,000 employees in my area, for example. All Americans with ALS are outnumbered by people working in one metro area for one company. So when you find someone else in your area that even remotely understands, you take note of that person and make an effort to keep them around. There’s nothing like being able to share on a deep and intuitive level what you’re going through. Because even though other people might understand on a theoretical level, it’s a completely different thing to find someone that you can just make eye contact with and say, “Fucking ALS.” and they say “yeah.” and …yeah, to their very SOUL they know exactly what you mean. Because fucking ALS. And because you know how shitty it is, you feel similarly compelled to help someone else in the same position to make their situation suck less. So you stick together, and exchange ideas, and cry for each other, and celebrate the triumphs of perfect strangers with whom you only share one horrible, horrible affliction.

So I guess I have a better understanding of why Harry Potter/Supernatural crossover porn forums exist.

Assisting the Assistance

One of the most common questions I get asked is some variant of “what can I do for you?” or “how can I help?” or “what do you need?” It’s a common response to finding out someone is in distress, when the situation is too large to process at once. It’s a natural instinct, to want to exert some kind of control over a situation that makes you powerless. Okay, it sucks that you have a terminal disease, what tiny little piece can I work at to make it suck a little less? There must be SOMETHING. Anything.

You know the absolute best thing you can do, for anyone going through A Big Deal?

Take care of their caregiver.

The Big Deal sucks for the person who is center circle, no question. But it ALSO sucks for the people around them – as Dr. Doug McClure told me, “You’ll find it’s not that YOU have been diagnosed, WE have been diagnosed.” The caregiver is responsible for keeping everything together when the diagnosed no longer can. They do everything from making/getting to doctor visits to cleaning house to coordinating visits to making sure they’re wearing clean socks. Lifting spirits and lifting patients. Finding hope and finding the damn car keys.

Dying sucks, and there’s a lot of planning and work and Massive Introspective Soul Searching ™ involved, but comparatively? My job is easy. I just gotta die. Whether I work at it or not, the end for me is the same. I just have to let it happen. Danielle, though, she has to plan and prep and care and organize and clean and all the things I can’t, from here on out. It’s a really big deal in its own right. Later on in our joyful journey of doom, if I just let things happen without working at it, I’m pretty much where I was either way. If she lets things happen without working at it? I won’t eat. She worries about keeping my house clean, making sure I’m not expending too much energy, researches places to live, and is pretty much an unpaid personal assistant.

…The woman cleaned up cat poop this weekend to spare me having to spend a spoon to do so. CAT POOP. THAT IS LOVE, PEOPLE. She’s signed on to scoop cat boxes for NOT EVEN HER CAT.

It’s a tough job but it doesn’t have to be thankless. I’ve done thankless jobs, and they’re soul-draining. I’ve done really shitty jobs happily, because I was appreciated for it. It’s amazing how far a thank you goes. An honest, sincere word of thanks. A “hey, I know this thing took up all your weekends for a month and I’m sorry I can’t pay you for it, but let me take you to lunch at least”. Taking a second out of your life to say “I appreciate the hell out of what you’re doing.”

I’ve said it before: it is fucking AMAZING how helpful it is, to simply have someone just acknowledge what you’re doing is hard.

So if you want to do something for me? Do something for Danielle. Buy her a freakin’ Jamba Juice or something. Ask her how you can help share her burden. She needs people to care for her. Someone to give her a break sometimes. And mostly? People to recognize that what she is doing is HARD. She is shifting her entire life to be there for me. People need to appreciate and acknowledge that sacrifice. I appreciate the ever loving SHIT out of her, and it will be extremely helpful to me if others do, too.