2015 Was A Jerk.

Things I Lost in 2015:

My ability to snap my fingers

My hands started their decline, this year. And it freaks me out. I’m still eating and breathing fine, so that’s grand. But…my HANDS, goddammit.

The Zombie Tramp House

Pretty damned near my dream home, bought at a steal because I got in at the bottom of the market, it had everything I wanted. Huge kitchen, 2 car garage, an enormous backyard for gardening, and room to spare. Six months after purchasing my house, I had a diagnosis that meant I wouldn’t be able to climb stairs soon. And the floor plan is such that there was no way to convert it to be accessible. And so I had to sell my dream house and move back in to an apartment. I traded a 4 bedroom house with a 2 car garage and huge yard for a 2 bed, 1 bath apartment. For only slightly cheaper than my mortgage payments.

My Main Babe

I lost my bestie and my primary caregiver and I’m still not sure what happened. And perhaps one of the reasons I lost her was because I still don’t understand why. I haven’t talked about that at all because it’s confusing and hurtful and I don’t want to present the wrong story, so I keep my mouth shut. But she’s no longer a main piece of my life and it hurts that she’s gone.

My friend Chad

Fucking cancer. God damn it all.

One of my newts

I found the dessicated corpse of one of my fire belly newts in the livingroom yesterday. Pretty sure Molly pulled him out of his tank and played with him until he dehydrated and died. And now I have one lonely newt in a tank by himself. Waldorf no longer has Statler. And I can’t even be mad at Molly for it.

But hey, at least I still have my health…..OH WAIT.

Meh, feeling pretty bitter about a lot of things today, but I know there’s some good stuff in there too. I made a lot of new friends. I found some new music. I had a lot of support. I had good times and good memories and still have a job and people who love me a lot. I still have friends and cats and music and family and the ability to enjoy delicious food.

But still. Dang, man.

Merry Christmas and all that

Sorry again for radio silence. It’s not like things haven’t been happening in VashtiLand, it’s just nothing really to do with ALS so much. It’s been normal. The new normal, not normal. Notmal. Born of a typo, I am adopting that word forever.

Last week I went to California to visit my mom for Christmas (surprise, mom!) and reconnected with an old friend, and got some awesome presents and made a fruitcake. That’s the TL:DR version.

First off, I want it clearly on the record that my little brother is out of his mind. Those that know him will not meet that statement with surprise. Nor is it the first time I’ve ever said those words, in that order. We drove down to Cali in a rental car, because it is much easier and cheaper to haul five people in a car than on a plane, especially when one of them is an infant and one of them is five. My little brother drives a tow truck on the night shift, he loves to drive – seriously loves it – and loves to drive at night, sepecially; he adores the quiet when there’s no one on the road. That’s not why he’s crazy. No. He is crazy because he did a full shift of towing, got off work at midnight, and then decided that NOW IS THE TIME THAT WE DRIVE TEN HOURS TO CALIFORNIA.

Out of his tiny little brain.

So despite concerns about driving tired and insisting that he was fine and promising on the souls of his children that he would pull over if he got tired, we piled into the car (literally; my poor sister in law was coccooned in the back seat with a toddler in his car seat, a baby in her baby seat, and blankets and pillows) and started the drive. We got fast food for the road, talked a little, and he drove, until we needed to pee or feed the baby or change the baby. With him complaining the whole time about this is why he likes to drive at night, you don’t have to stop for pee breaks when everyone’s just sleeping. It’s weird for me to sleep in the car – for ten years I was with a dude who needed a copilot to keep him awake when he drove long distances, like a NORMAL person, so road trips have always equaled THERE WILL BE NO SLEEPING. On this trip I was expected, encouraged to, and that was weird. It was nice though, I will always prefer traveling by car because it’s just SO MUCH LESS HASSLE. No security checks and long lines and fussing about where is the disabled entrance, just the occasionally dodgy public bathroom. And little brother annoyed that we have to stop, AGAIN, because it didn’t occur to his wife to breastfeed when we stopped for potty breaks.

THE NERVE OF THAT WOMAN AMIRITE.

We got to the hotel around noon, napped, got some In N’ Out for dinner, went out to see some friends, looked at lights, came back to the hotel, and settled down for a proper sleep. Which of course meant things had to go wrong. And by wrong, I mean someone hitting a transformer at 3:30AM and knocking out the power grid which triggers the hotel’s fire alarm. And by wrong, I mean the hotel’s emergency lights also do not work for some reason. None of which I knew, of course, just OH MY GOD EMERGENCY NO LIGHTS GET OUT GET OUT GET OUT!!! Cue me, woken out of a dead sleep in a strange hotel room with no clothes on, in complete darkness except for a flashing strobe light and an alarm so loud it is literally impossible to think. They put me in an accessible room (yay awesome hotel manager!), close to the exit, but first I had to get some clothes on, which meant stumbling around in complete darkness punctuated by blinding flashes with the most piercing, annoying screaming in my ears the whole time. I wound up outside barefoot in 34 degrees, in jeans and a backwards tank top, sweatshirt and boots in hand, hobbling through gravel to find a place to sit and put my boots and braces on by a blissfully near-full moon. I found the rest of my family, in the car keeping warm, and we sat in the parking lot, watching the pattern of flashing lights in the three story hotel (which were kinda cool looking from a safe, sane distance), my five year old nephew freaking out because he’s scared as hell and hates loud noises, my brother telling me how he went to check for me and didn’t know if I was still in the room and had fallen down or something so he was relieved that I was okay, and he is MUCH cleverer than I am, because he flipped the safety lock on his door so it didn’t shut all the way. Which meant that, unlike me, he could get back in to his room when the power came back because I’d left my wallet and phone and everything in the world in my room except pants, shirt, sweatshirt, boots, and cane. The fire department came and checked everything out, the power came back on while they were inside, we were all let inside when the firemen gave the all-clear, I had the poor night manager (freaking out because everyone was freaking out at HIM like it was his fault personally that this happened, on the phone with the alarm company because why didn’t the emergency lights come on seriously what the hell) let me back in to my room at around 4:15 or so, and got back to sleep at about 4:30.

Which is when the alarm went off again.

Just once, probably because the manager had finally gotten hold of the alarm people and they reset the system. But still. The punch line to all of this is that I’m doing a sleep study program at the moment, and it records audio while I sleep to see if I talk in my sleep, or what kinds of interruptions happen to disturb me (looking at YOU, Parmesan), so I have a recording of myself when the alarm went off. Turns out, when startled out of a dead sleep by a panic inducing noise and light show, I make a startled little “Oh!” sound like a cartoon.

And with that, it was Christmas Eve!

When I woke up after all that, I messaged my Squirrel Buddy Jim. You know, that buddy you have that you can just get together and squirrel around with. Mine is named Jim. I confess I was nervous about the meeting – I hadn’t seen him in person in too many years and I was/am completely self conscious about what the disease has done to me, how that affects people that haven’t seen me in awhile. Hi, last time you saw me I was 50 pounds lighter and didn’t need a cane and could step up on a curb just fine, how you doin? I guess I’m allergic to people feeling sorry for me? More like, it hurts me a lot when my condition hurts someone else. I get sad when I have to tell someone about it, because they get sad. And Jim has been a happy distraction in my life for almost 25 years and the last thing I want is to make him sad because I love him a lot. And he was not disturbed at all, outwardly, and was the perfect mix of casual ‘let me help you with this’ and ‘this is totally normal no big deal’ about it all, and I could cry, I’m so grateful. I should have expected as such from him, but I was still nervous, and I’m so happy I had no reason to be. We hung out like old times, we showed each other awesome things, I met his kids again, since they were wee and just born the last time I saw them, and we ate cookies he’d decorated and ate miracle fruit and tasted sour things and had a marvelous time as always. We talked from our hearts on the 45 minute drive back to my hotel (he lives in the middle of nowhere), and reconnected as always, and everything was normal and good.

And then Christmas was with my family so that was all just weird. Because family. I’m glad the aunts and uncle and cousins drove up to meet with us at my mom’s house, because I don’t know when I’ll get down there again. Traveling in general is getting harder, and soon I won’t be able to travel at all without special accommodations, which will make me less likely to travel at all. I told them all it’s their turn, now, to visit me.

And then we got up and out of the hotel on Saturday and my crazy brother drove us all home. And it was good to be home, and sleep all day Sunday except when blowing up Raiders in Fallout 4 or dodging Parmesan’s icicle feet because oh my GOD he would not leave me alone all day. And it snowed, just a little, and I slept through it, but that’s okay. It was a good Christmas.

I hope yours was grand.

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.

Engineers are mad scientists waiting to happen

The thing about being friends with engineers is that you can no longer off-handedly say things like, “Man, I totally want a little spring loaded boxing glove on my wheelchair so I can push a button and punch people in the crotch when they piss me off.”

Because they would TOTALLY BUILD YOU ONE.

To wit:

Vashti Ross
hahaha it was my plan to be that feisty old biddy who hits people and throws things and gets away with it cause she’s old.
Now I could get away with it because I’m dying but I won’t be able to throw things
sad

Jack Bradach
I’ll build you a cripapult!

Vashti Ross
yoou just made that word up and I can tell from here you are immensely pleased with yourself for it.
good job.

Jack Bradach
I am not surprised you can feel it, USGS is going to be reporting on a smug shit eating grin of unprecedented magnitude.

Vashti Ross
hahahahahaa

Jack Bradach
This will be a thing. Nerf balls that can be computer targeted.

And he could do it, too. I will have to be more careful about saying ridiculous shit to people who are actually capable of making them reality. Even though it would be hilarious.

Dalton Chad Everett

I want to tell you about Chad. I wanted this to be a video update, but I don’t trust my face to stay screwed on properly and my mouth to make the right words, so I present him to you in written format. I hope that’s okay.

I began working at Stream in 1998. It was two months after I’d left my entire world and moved sight unseen to Portland. The prejudice against Californians turned out to be a real thing and not even Dairy Queen called me back, but a temp agency hired me at last, to work a call center doing tech support. It was $10.58 an hour, more than I’d ever earned before. I was excited. Excited to be employed, and to be among some of My People – Stream didn’t have a dress code, really, only that you hopefully didn’t wear offensive shirts and your clothes weren’t full of holes. Bathing seemed to be optional for some of them, but that is beside my point. Being allowed to wear what you wanted, to be who you were offline at work, too, provided you could pretend to be an adult on the phone? That attracts a lot of the Strange, and a lot of the Geeks. I met a lot of amazing people there, some very precious weirdos who I carried with me the rest of my life.

There was this one guy, though. I became peripherally aware of him at some point, always immaculately dressed in a crisply ironed button down shirt, hair perfectly slicked down in a ponytail, and thought to myself, ‘Wow, that dude is trying too hard. This is STREAM.’ I found out he was a manager. Figures.

And then he became MY manager, when I got sick of fixing paper jams and explaining to people why their laser printer was not printing the same color as what they had on their screens. I left laserjet land and moved to the BigTime Software contract where I supported a very popular photo editing program and ..spent my time explaining to people why the color on their prints was not the same as what the program showed on the screen. He was a pretty good manager, it turned out. I found out he was also fluent in Sarcasm, like me, and he had a sense of humor so dry that diaper companies used it to improve their product absorbency. He was that rare breed of manager that can pass down mandates from the Uppers and fully admit that it was complete horsecrap but we had to do it anyway so suck it up. Without pissing you off. He did what was in his limited power to make the job less miserable while still getting work done.

I learned to like him. I learned about his GINORMOUS cat, as he showed me a picture of the beast with his work badge alongside him for scale. I learned about his habit of ironing his shirts in the morning as a moment of peaceful zen before starting his day. I learned that the goofiest things would split his face into a ridiculous grin. And he smiled so easily. He gracefully accepted the teasing of his employees – seriously, when you get a bunch of creative misfits together, stick them on the phones repeating the same things over and over, and then give them all incredibly powerful photo and video editing tools, there is GOING to be mischief, and it is GOING to hit the management. He didn’t care. He thought it was funny. I learned he accepted his own mistakes with a grinning grace. He baffled and then charmed me with a habit of ending conversations with “…So there.” It’s a brilliant way to end conversations that don’t really have an end; you’re just sort of finished talking, and you don’t know quite how to end it so you can leave. Chad figured it out and taught me, and to this day I still end conversations that way, sometimes.

He wasn’t one of the people I took with me when I left Stream, and I couldn’t tell you why. I left him there and he became a memory of a manager. I am fortunate as hell that the Universe didn’t let that stay that way for long. It turned out that one of my dear friends, and someone I DID take with me, dated him on the sly, which I found out years later, and eventually they married. So I was going to keep him anyway, but the connection was made even more permanent as he moved on and became a manager at a company I later applied for (and didn’t get the job). A dear friend moved up here to Oregon and worked under him. The company was near my home, and when I got a job at Intel at last, I would occasionally see him getting dropped off for work, and I would stand around and chat with them for awhile. When he found out I worked for Intel, he was happy for me. “Well I could be working HERE,” I told him, “but you declined to hire me.”

He grinned and flipped me off and his wife laughed.

Every time I saw them, they were laughing and smiling. It automatically brightened my day when our commutes overlapped. Life continued, and I kept in touch through Facebook, and he wrote a book and I was impressed as hell, and vicariously enjoyed their company through their posts and their pictures, always smiling, always laughing. I made promises to myself over and over, I really MUST hang out with them some more, I adore these people.

When I was diagnosed with ALS, they both expressed words of support and offers of help, and I knew they were one of the small handful that actually MEANT it. Everyone meant well, but there were a select few that I knew I could actually rely on if required. Sure, you automatically say, “please call if you need anything”, but would you really be willing to come over twice a week and scoop my cat box when I can’t? They would. They totally would. If I needed to, I could have couch surfed until I was in hospice, they would have done anything to help me, and I was almost terrifyingly overwhelmed with it all. She always had words of empathy and support and love, and he always had a sarcastic joke to lift me up. And I adored them both and thought, we really ought to get together.

On March 5th, his wife Dawni posted: “To our friends and family, yesterday what we thought would be a routine doctor’s visit turned into a little more. … He will be fine, but he needs some extra love and care headed his way.” Those of us who knew Dawni knew damned well that if things truly would be fine, she would not be so vague and pointedly cheerful. “Don’t worry,” she wrote, and we knew to worry. A lot. And slowly the story came out. An emergency surgery had revealed Stage IV cancer. Inoperable. Weeks to live, maybe. And a fundraiser page was raised and everyone turned out in DROVES to help. All of us were stunned, shocked, helpless, angry that such an awful thing was happening to two amazing people. And I watched her, overwhelmed by the love and support, and I watched him smile and joke through it all, and I was granted perspective.

I saw my own situation from the outside. I saw what it was to have no idea what to do with terrible news and helplessly heap love instead. I saw someone ELSE completely overwhelmed with sudden love and support they didn’t know exist. I got to be a part of the uplift instead of the uplifted. I got to experience, too, the frustration of being willing and able to help someone who didn’t know how to ask for help. I came to know the singular frustration it is, to know someone needs things but is so fiercely unwilling to burden someone else with their troubles that they will never ask. And it taught me to let people help me, with better grace. I’m still not there. But I’m learning, and Chad and Dawni taught me.

Dawni threw him a Life Party, which I’ve posted about and STILL think is the best thing ever. Seriously. Do this. It was amazing to see them both, and be able to celebrate his life with him present, and see and hear all of these strangers telling stories about him in a way I never knew him. And because I DID know him a little, I gave him “I’m Dying” cards to play, and he loved them, even if others at the party thought them morbid. He and I thought them hilarious and that’s all that mattered. He and I spoke for awhile, but not long as he was the guest of honor, and he asked how I was doing, and I wanted to say, “Who cares? This is about YOU.” I offered what help I could, with some of the bureaucratic BS that comes with dying as I’d had a year’s head start on him, and we made plans to hang out. Soon. Chad and I vowed to outlive each other. And I left that party, enriched and uplifted and so grateful that both of these people had ever come into my reality and even more graced that they stayed.

When I saw him next, Danielle and I visited them at home. I was hoping to provide him with support as a fellow dying person even though our roads were vastly different. I was hoping Danielle could be support for Dawni as the practically-significant-other primary caretaker of a dying person. Nothing ever got that heavy, because it was Chad and Dawni. We ate dinner, we played card games, we talked about comics and cats, and we laughed a lot. Dawni apologized that the kitchen wasn’t clean, as I prepared us a dessert, and that frustration kinda reared up again – “woman, we are HERE, we are ABLE, LET US DO SOME DAMNED DISHES FOR YOU.” But I shut it down, for all of the hundred times someone has offered to help me and I wasn’t able to ask them, “Yes, can you take the garbage to the curb for me? It’s too heavy.” And I marveled at that mindset from the outside, and gained a new appreciation for how frustrating it can be for other people, and I became humble and shut my mouth. And made delicious syllabub. When we talked about the heavy things, it was with a defiant levity – gallows humor is strong in all four of us. I found that I didn’t have to explicitly offer support for him, and neither did he, for me. We both knew what the other faced, and in silence we shared it and in laughter we beat it down.

As Danielle and I left, Chad and I both promised each other another 30 birthdays. And we both knew we were lying.

Things progressed at a much faster pace for Chad than I, and in October, things became more urgent, and I made good on my promise to visit again. I was aware peripherally of the procedures and whatnot from Facebook, but I was able to get an unfettered view into things from the two of them in person. Call it the privilege of being in The Dying Club. I knew something about it all, so I was allowed to know more than others because I could understand it like no one else could. I use the word privilege sincerely here – I am truly glad I was trusted with information because I could handle it. Because I knew. It was a much quieter visit, with Chad drifting in and out of sleep, but the conversation was still full of laughter and comics and cats. He asked sincerely how I was doing, and again, I wanted to counter, “WHO CARES? THIS IS ABOUT YOU.” He never let it be about him. Even at his worst, he wanted to know how I was doing. And we talked frankly about timelines and outcomes, and when I left we bumped fists and swore another 30 birthdays. And we both knew we were lying.

In early November, Chad declined enough to need hospice visits at home, and on the 16th of November, they moved him into hospice care to wait the end. We all held our breaths, and shared stories on his facebook community page, and laughed and wept and waited. We talked fondly of him, continued to support his wife the best we could, and be grateful to the people who kept us informed, the outer circles to Chad’s center. We pushed support in, we encouraged dumping out, and we waited. We were told he had hours left. We offered love and support, and we waited.

He passed quietly the night of November 21st.

That night, the world lost a hell of a sense of humor, a wry wit, and an infectious grin. Dawni lost her best friend and her true love and her partner. Her parents lost a son. Many lost a friend. I lost a primal and important connection to my terminal disease. I lost another perspective from the other side, and a new perspective from the same side. I lost a touchstone, a sanity check, an explicit permission to think this is all as funny as I think it is, sometimes.

I lost a brother in darkness.

Chad’s struggle is done, now, and we’re all relieved. It was a hard fight, and impossible odds, and we miss him to pieces. We still rail against the universe for its unfairness – why him? Why her? Why wring the joy out of such an amazingly effervescent soul? Why make it so hard? There are no answers for him. There are none for me. It just is, and all I can do is be grateful I was allowed to know him for a while, and share his joy, and be contaminated by his refusal to stop smiling, ever. His big, dumb, goofy grin. Seriously, it was ridiculous.

He was amazing. And I thought you should know about him.

So there.

“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.

First Time For Everything: Dropping

Also this weekend! And something I wanted to mark down, and something I should be keeping track of, and so you get this little nubbin post.

Saturday was the first time I dropped something. I was washing a plate in the sink, and I dropped it, and it chipped against a stoneware bowl. I remarkably did NOT lose my shit! Just, “well fuck, I can’t replace this plate, they don’t make them anymore. I guess this goes with the chipped bowl from the same set, now.” Disappointed. Upset. But shit held together.

It’s not the last thing I will drop. It won’t be the last thing I break when my hands prove unable to handle the weight. Maybe if something shatters spectacularly, something I love, that will be the time I lose it. Instead, I turned the plate over, found the chip of crockery in the sink, and sighed. Time to get lighter plates.

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.

So much to say oh my gosh

I’m sorry! I’ve been quiet! But for a good reason! I’ve been on a vacation. It was a complicated vacation and I’ll tell you all about it. I’ve got a couple other half-written entries in the backlog, too, and I need to get to those as well. And there’s the weekly video I haven’t done in 2 months.

Tomorrow is Clinic, which I had COMPLETELY FORGOTTEN ABOUT. oooops. I will tell you about all of these things, how that goes, how I creeped out a lot of kids in a theme park, how I took another step along the ALS life route and how I feel about that, all of it. And how I almost got into a fight. For now, though, I’ve been back from vacation since Thursday and I’ve been sleeping 12 hours a day to recover. Totally not kidding.

But hey, I’m alive still, and life is pretty good until I have to go back to work, and I’ve missed you and you look amazing, have you been working out?

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.

Sometimes silence seems safer.

Hey guys.

I’m doing that thing I do, which is to just not say anything if I’m having a bad time, but the point of this space is to document all of it. All of the awesome, all of the real life boring stuff, all of the hard parts, all of the ugly bits. And while I hate burdening people with my woes, it feels disingenuous to not talk about them. Here, of all places. Where I’ve purposely carved a space.

So here goes.

I had a bad weekend. It kicked off Friday, when about an hour before I was supposed to leave, I was asked to provide information in the aid of making people unhappy, basically a sort of “we have to take some toys away from our kids, which ones?” and I know that it’s just going to make things harder and everyone’s already stressed out. There is literally nothing I can do about this, and while realistically I know it’s not up to me to be the Morale Champ of our group, most of the time I feel like it is. So when things are stressful and I can’t fix it, I get unhappy. I have a very limited power, and I use that power beyond what I probably should to keep things together, but it’s worth it to me if I can help my coworkers feel less shitty about their jobs, because I like them.

I’ve been watching my job take things away and make things worse, and it’s the nature of business, I totally get that, but it is supremely frustrating to see things happen and know that it didn’t used to be like this. And so I fell in to a sort of employment despair, because I can’t see things getting any better at all. And in that dark space, I reverted back to the thought that I STILL don’t know the origin of, “one more year. You just have to put up with this for one more year.” And my brain seized on that and began planning my exit and I completely freaked out, both because massive life change and holy shit could I afford this, but also a sort of egotistical WHAT THE FUCK ARE THESE GUYS GOING TO DO WITHOUT ME. If I leave, the smallest, stupidest things will cease to be, things that don’t mean much but make their lives easier. Like a goddamned supply cabinet. We’re supposed to fill out a form on a web tool when we need office supplies, but I deemed that Way Too Fucking Stupid and spent a couple hundred bucks outfitting us with a goddamned supply cabinet so that you can get a fucking PEN when you need one instead of filling out a form and waiting for an intern to bring you one. If I leave, no one is going to maintain that cabinet.

It’s all stupid shit, but it was my first moment of “holy shit my absence is going to cause problems for someone when this disease takes over”. There’s an intellectual exercise in “what would happen if I leave” that I think everyone indulges in, and to a revengey sort of degree when it’s to do with stressful relationships or jobs and we imagine how screwed they’d be if we just walked out; but this was a for-real, scary, “I am going to be gone and my void is going to cause someone genuine discomfort.” And it hit me kind of hard. And my brain, of course, spun in to the nightmare world of trying to plan financial escapes and mentally going over all of the homework I still have to do and…..

My brain still in this space, I went to game night with some coworkers, and that was awesome! Except when filling out a character sheet, and my hands just..wouldn’t work. I have very good penmanship when I take the care to do so. I have been complimented on my ability to write legibly on white boards. I’ve noticed some decline there, but that night I could barely read my own writing. And it sat in my gut and festered, and when I got home that night, I probably should have allowed myself to cry it out, but I tried to medicate it away instead. And that led to a whole weekend of moping and sadness instead of one night of crying jag catharsis.

I laid in bed and my cats sat on me and it was hard to move them off of me, and that made me sad.

I thought about the special pen and ink I got in New Orleans to write my goodbye letters and now I’ve waited too long to do that, and that made me sad.

I looked around my kitchen and the drawers of baking things and knew I’d never bake to the level of professionalism I wanted, and that made me sad.

I read Facebook and found out that my friend with cancer is taking a downturn, and I was sad.

I watched a new series that people were excited about and I just couldn’t get into it, and that made me sad.

Fun plans were canceled for Sunday morning and I just didn’t have the energy to do something else instead, and that made me sad.

A friend with MS reached out to be in a bad space, and I provided what comfort I could, and her pain and anger made me sad.

My cat barfed in the hallway, and I just…couldn’t get up to deal with it that moment, and that inertia made me sad.

It’s lifting now, it’s still there around the edges, but it will fade, it always does. But I need to be honest with myself when I get sad, and I need to give myself permission to mourn, and I should probably find a space to talk about this with someone who gets it but isn’t my therapist, but all of the ALS forums are just so AWFUL, one part “MY LIFE IS THE TERRIBLEST AND YOU DON’T UNDERSTAND AND HERE IS MY LITANY OF WOES” competition and one part “We sadly announce that our member Whassisface died this morning.” Neither is helpful. Cause sometimes it ISN’T terriblest, and I’m going to die, but not today. And sometimes you just need to say “This sucks” and have someone say, “Yeah I know” who really DOES. And then lie and say it’s going to be okay, even though it isn’t.

I’m learning a lot of things. I’m learning to let myself be helped. I am training myself out of assuming that when I accept that help, it is a burden to someone else. I’m learning to let myself be weak. I’m learning to give myself permission to breathe in the in-between times without becoming a lazy depressed lump. And I’m learning to let myself grieve for myself. They’re all hard lessons, things I’ve trained myself out of over a lifetime of only ever being able to count on myself. It’s hard to be vulnerable. And it’s hard to put these things here, it’s so much easier when it’s energetic anger or joy.

But for now, I’m a bit depressed. It’s okay. It’s understandable. And allowed. But it’s hard to be. I want to be my usual bouncy optimistic self, and she’s still around here somewhere, but she’s taking her sweet time coming back around.

So, sorry it’s been so long. I’ve been quiet and I shouldn’t be.

I think of you a lot, though. And I miss you.

Quick Check In

Hey! I’m in Guadalajara, Mexico for the week on business. It’s been an unproductively busy week so far and every minute’s been planned out so I haven’t had time to check in.

In Mexico, I find, disability ramps are only ramps by technicality. They’re barely wide enough for a wheelchair, and usually a really steep incline. The ramp to the hotel lobby is about three feet long and a 45 degree incline. The porters have to get a running start to push the luggage trolleys up. NOT easy for a chick with a cane.

I’m feeling particularly FAT while here, it’s muggy and walking is hard, so I’m constantly a sweaty gross mess. There’s a LOT of overweight people here so it’s not like I am out of place, but the sweating is really stressing me out. I wish I were able to be in Mexico and be cute and walk around. I haven’t been able to see any of the city, really, except as we drive from the hotel to work to the restaurant we’re all eating at back to the hotel. I’m trying to scheme a way to go out tonight and play. If I were healthy, I’d just go for a walk and see where it takes me, but walking is slow, and a huge effort, and I don’t want to be looking at a store while sweating buckets on the merch, you know? HI DON’T MIND ME I’M JUST SWEATING AND SHAKING LIKE A TWEAKER.

It certainly made going through security very interesting. I SWEAR TO GOD I AM JUST A FAT SWEATY PIG I AM NOT NERVOUS OR ANYTHING.

Being here has hastened my want to travel while I can. It’s been difficult, already, and I need to see what I can while I am still somewhat able. But planning that has to wait; I have to get back to work.

I hope you’re all having a terrific time.

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.

Dreaming of a Different Me

Dreams are such fickle things.

I’ve always dreamt strangely. I mean, really strangely. Everyone’s dreams are weird, but I’ve had several people tell me with impressed shakes of their heads that mine are especially so. “Dreams are weird, but YOU, man. YOU dream in another category.”

I learned how to fly by throwing myself at the ground and missing (ala Douglas Adams) but I was really crap at it and could only hover a foot or so off the ground, and it pissed me off that everyone I taught the trick to was so much better at it than I, and then was desperately trying to fly better when Lucille Ball was trying to kill me for some reason, and she was chasing me across the rooftops as I tried so hard to get it right…

It doesn’t help that I dream very vividly, I can draw you maps of places I’ve been, I can remember the tiniest details. And some of them seem…Significant, somehow. Some more important than others. They stay with me for days. I write those ones down, and I try to figure out what they mean, if anything. Sometimes dreams are just dreams. They’re nothing more than your brain’s way of sorting out events and memories and people, in the background, when you don’t have to try so hard. Your brain takes ideas out of the toybox and sees how they work together. Usually it’s a jumbled mess, mine usually have a storyline. ‘m usually a far more powerful person in my dreams, someone with psychic ability or superpower or something outstanding. Someone who can fix things. My brain takes important ideas out of the toybox gently, trying them out for size, seeing how they fit, and usually putting them away before they get dirty. If I dream about work, I know I’m under way too much stress. If I dream about past jobs, I know there’s still some resentments there that I probably ought to work out. Sometimes my dreams show me things that need to be addressed, things that I haven’t admitted to myself, things I haven’t allowed myself to think about.

…And sometimes my subconscious is just an asshole. “Hey, I know you haven’t thought about your dad in awhile, so here’s a dream where he shows up at work and you have to be polite to him because you’re at work and in public and he makes small talk with you and you really want to like him but you just can’t, and now he’s introducing himself to your boss who is saying maybe they can find something for him in your department, yay, father/daughter work day every day isn’t that great!” “oooh, hey remember that girl you crushed on, like, 20 years ago? Here’s a fun little what if scenario where she confesses it’s TOTALLY mutual and right in the middle of happy makeouts your ex husband shows up and sits down even though you are hinting STRONGLY that he should go away and he tells her terrible lies about you, so she leaves, crying. Wasn’t that fun?” “Storytime! Everyone you love is dead and everything is ashes and darkness and you’re all alone and you hear a cat crying in distress somewhere but you can’t find it! YAY!”

I’m usually not disabled, in my dreams. Not yet. It takes a bit of time for something to seep into my identity to the point that it’s who I am when I am dreaming. My tattoos took ages to show up. I There have been maybe a small handful of dreams so far that have ALS in them. Usually it’s a sideline thing. One time I almost got into a fight because they kicked my cane or something, one time I wanted to do something but I couldn’t, because I didn’t have the ability. It’s usually a minor thing, nothing existential or terrible, just…this shows up as a piece of me, subconsciously from time to time.

But last night, in my dream, I sat and watched my four year old nephew happily playing with toy cars on the floor of my apartment, and was suddenly overcome with a terrible grief, that this kid would never know me as anything but disabled. And I woke up crying.

My brain is a DICK.