Protip: Maaaaaaybe don’t prey on dying friends?

((I suppose I should be grateful. Instead of spending all day freaking out about tomorrow being my last day of work ever, I spent all day in a blind seething rage. It was a nice distraction, I guess, from the depressing AF thoughts that would otherwise have occupied my thoughts today. I knew halfway through this whole thing that 1) I was definitely going to blog about this, and 2) it was going to contain ALL OF THE SWEARS. You are hereby warned about ALLLLLLLLL of the swearing and anger contained in the following post.))

Today I am going to tell you about Jillian Mai Thi Epperly.

Maybe you’ve heard of her. If you haven’t, well, you’re in for a video treat in a moment. If you have, then this is NOT going to be the rant you expect. Oh no, it’s so much worse.

I met Jillian in fifth grade, at Faria Elementary School in Cupertino, California. She is one of the few girls I remember, because she was one of the few kids who actually was my friend back then. I was very strange little kid, and thanks to my genetic mutation I looked strange as well, and kids are horrible little monsters, so I didn’t really have a lot of friends. She was one of the few who actually spoke to me on a regular basis. I think we bonded a little bit, back then, because she was a super Asian kid with a white girl name, and I was a white girl with the super Middle Eastern name, and we just didn’t match peoples’ expectations. So we kind of matched each other.

She found me on Facebook a few years back. It was ..really strange to hear from her. She asked if I remembered her? Of course I did. You don’t forget a Vietnamese girl with a name like Jillian, especially when she was one of the few people who was ever nice to you in grade school. She said she remembered me, because when we were kids I had told her that the strange weather we were having was a result of El Niño. She told me she always thought that was the funniest thing. I was a little confused at that remark, since um…yeah, El Niño totally WAS the cause of a lot of weird weather we’d had? Why was a huge storm affecting weather patterns so funny, I don’t get it? But okay. I accept your friend request. I quickly learned that Jillian had become a rabid anti-vaxxer, and quickly blocked her from appearing in my feed but remained friends with her and honestly…kind of forgot about her. This was a couple of years ago, and I was a lot more generous and patient towards anti-vaxxers and pseudo-scientists back then. (Not anymore. SERIOUSLY VACCINATE YOUR FUCKING CHILDREN YOU GODDAMNED MORONS. PEOPLE ARE DYING OF PREVENTABLE FUCKING DISEASES WE HAD ALL BUT ERADICATED. WHAT THE FUCK IS WRONG WITH YOU.)

In my personal Facebook, I chronicle bits and pieces of this ALS bullshit journey, and post a link anytime I update this blog. Overall though, I purposely try to keep my Facebook page very light because the world at large is a fucking depressing place and I will drive myself crazy if I talk about nothing but politics and everything that makes me angry. So instead, every month I choose a theme and post related pictures. Usually it involves some kind of pun like Janusweary, with pictures containing foul language, or Gaypril, pictures of LGBT+ positive images. This month’s theme is Awwwgust, and I’m posting lots of pictures of adorable things.

This morning I posted an adorable picture of a kitten that looks for all of the world like it is smiling. It had not been posted for five minutes when I got two comments from Jillian (after not interacting with her for months and months, mind you). The first was link to her website, with a…sort of unhinged screed containing a lot of marketing language along the lines of “Are you tired of the cycle of dependence on drugs, supplements, and herbs spending thousands and thousands of dollars and you are still not feeling better 100%? ” I sighed inwardly, it was a lot of marketing babble clearly trying to sell me on whatever snake oil she was passionately involved in and wanted to evangelize about. The second comment, though, was this: “Remember I told you I’d find something for you well I created a protocol that could give you the opportunity to reverse your condition and I hope you’re open enough to read my book or at least my website before you buy the book”

I just sort of…stared at the screen for a second. Did she just…?

Really? This is what’s happening?

I typed up a reply, deleted it, started to retype, and just…got…so ANGRY. I debated deleting her comments and blocking her for real and moving on with my life, but I am emotionally fried right now for obvious reasons and I was feeling petty as fuck and..kiiiinda wanted to see my friends happen at her. So I allowed her comments to stay, and let them let her have it. And they did, in spades, because I know some VERY SMART and VERY SNARKY people who, as it turns out, are very, very protective of me, and took great delight in dragging her ass, but that’s not what this post is about.

((I love my friends so much I can’t even tell you.))

I decided to respond before anyone else could, though, juuuuust in case I was misunderstanding. The comment I eventually settled on was, “…you’re seriously trying to *sell* me something you think might cure my terminal disease? What predatory fuckery is that??”

And then my friends were all up ons, having a fucking FIELD DAY with her, and that’s when I found out that she was actually a little bit of A Big Deal in the pseudo-science community with tens of thousands of followers in a self-described (!!) “poop cult” and had appeared on Dr. Phil to defend her aforementioned “protocol” cure. Now, I’m not here to talk about her miracle cure “protocol” of fermented salt water and cabbage. That’s not at all what this post is about, and a LOT of other people have already expounded on that subject. Each of those words is a different link that will open in a new window. Enjoy that light reading for later, if you feel like it. Though I WILL include this video link right here for you to watch:

((That man is very smart, and swears like a sailor, and is my new best friend. Because he is smart and swears, yes, and we have the same Bob Ross shirt.
His videos are Good Stuff, but his research on Jillian is amazing.))

Her response was, “Wow vashti wow all I’m trying to do is help you out because of your condition knowing what you’re dealing with but that’s fine if you don’t want to have an opportunity that’s fine you can stay sick and let your friends keep you sick good luck to you” and then, “Because you deserve better than what you have right now if you don’t think you deserve that then you deserve to have whatever you want”

An. Opportunity. To give her money? For information she thought might SAVE MY LIFE.

“….you’re asking me…as a FRIEND with a TERMINAL ILLNESS…to GIVE YOU MONEY to cure my disease. I DO deserve not to be sick. And I ALSO deserve to not be taken advantage of in a vulnerable state. Even if I believed for a SECOND that fermented cabbage water would cure me, it’s unbelievable that you are telling me to give you money in exchange for this information. I don’t give a shit if it works or not; if I honestly believed I could cure anyone’s death sentence, I would hand it over in all quickness. If I could cure a friend’s cancer I would carve out my own kidney for free before they even asked. You’re not trying to help me. You’re trying to make money off of me and that is fucking reprehensible.”

After sanctimoniously telling my friends, “I will let vashti block me I am not going to be bullied by any of you people because I’m trying to help and if you guys want to stay in your little environments with no hope and all sickness then fine”, she responded to me, “And I expect a lot more out of you vashti considering you and I went to school but it seems like your sickness really took you over and made you a very hateful person and I’m sad for you”

“And I expected you to be a decent human being,” I told her, “and not try to take advantage of dying people but WHOOPS guess we were both wrong today.”

And then she blocked me.

There..

There are not enough swears and throwing things and table flips IN THE WORLD to convey my anger. This woman is an absolute piece of shit. Again, NOTHING to do with whether or not her ‘cure’ works or just makes you shit forever until you literally die of dehydration. Just. As a human being. This woman looked at me, a woman she called a friend since fifth grade, saw my debilitating terminal disease, and thought to herself, “this is a perfect marketing opportunity.”

And then after blocking me, she crawled back to her facebook cave and wrote this, which a friend was kind enough to screenshot:

I…she… She felt it was acceptable to try to SELL a theoretical CURE to a DYING FRIEND, because…I am “still well enough to buy things on the internet”.

…..

AS LONG AS SHE’S STILL KICKIN’ WE CAN GIT SOME MONEY OUTTA HER YET, BOYS. YEEEHAWWWWW!!!!!!!!!!! SADDLE THE FUCK UP AND LET’S GIT ‘ER PAID!!!!

what the ACTUAL MOTHERFUCKING FUCK.

THIS WOMAN IS AN ABSOLUTE GARBAGE PERSON MADE OF DOG SHIT AND FIRE.

It’s not bad enough to sell false hope to dying people just to make a quick buck, and that is some REPREHENSIBLE SHIT, believe me, but – lady, YOU KNOW MY NAME. WE WERE FRIENDS IN GODDAMNED GRADE SCHOOL. YOU KNOW MY NAME AND MY STORY AND THE HORRORS OF MY FUCKING DISEASE AND YOU SAW THIS AS A MOTHERFUCKING SALES OPPORTUNITY. And then when that BACKFIRED in a frankly GLORIOUS WAY, thanks to my friends, you crawl back to your page and act like YOU ARE THE VICTIM??? YOU WERE ONLY TRYING TO HELP ME?? BY MAKING ME PAY TO BUY YOUR BOOK AND SUBSCRIBE TO YOUR WEBSITE?

You absolute PIECE OF SHIT.

I said just in my last post that I would never wish ALS on anyone, but holy FUCK is she coming close to a candidate. Cause not only allll of this, she is ALSO a goddamned hateful human being who thinks her bullshit will “cure” gays and trans and autistic people. BECAUSE SHE THINKS HOMOSEXUALITY IS SOMETHING THAT NEEDS TO BE CURED WITH SEWAGE. So. Yeah. In the name of science, I hope she DOES get ALS. It will be a scientific experiment. If it works and ALS goes away, we have a cure and she can have a goddamned Nobel prize. If it doesn’t, then the world is rid of a predatory batshit waste of human tissue who spent her final days shitting out her own stomach lining.

I’m good with those odds.

What’s Next

Three weeks, one day. And God knows how many times more I have to repeat this conversation:

“So what are your plans after you leave?”

“Well, for the first two weeks of vacation, I plan to sleep. I’m purposely planning to do absolutely nothing for those first two weeks. It’s going to be GLORIOUS. After that, I’m not really sure. I will probably volunteer somewhere. I will go absolutely crazy with nothing to do for too long. So I’m not sure. I’ll figure it out.”

“Well good luck to you.”

Cue uncomfortable undertones, awkward silence, shuffling to exit the conversation. In reality, here’s how I would like that conversation to go:

“So, what are you going to do after you leave?”

“Die.”

I mean, that is what is going to happen. That is why I’m leaving. I can no longer work because I’m going to die. But because we suck at conversations about dying and death, because our society is so uncomfortable with the mere mention of the D-WORD, in polite society I’m not allowed to say that. Even though we all know it’s true, and no shit, right? Medical retirement; I am leaving because I have a medical condition that is debilitating and ultimately, sooner than we want to admit, terminal. THIS DISEASE IS GOING TO KILL ME DEAD, IS ALREADY KILLING ME, I AM NOT LEAVING BECAUSE I WANT TO.

And so instead, I am forced to have the same inane conversation. And even though they know the real answer, the true answer, I go through the motions and come up with some stupid answer that denies my own impending mortality. I mean, what are they honestly expecting me to say? “Oh, you know, I figured I would take two weeks in the Hamptons. After that, perhaps pursue my scuba certification and do a week in the tropics. Learn a new language. Take up waterskiing maybe. Maybe learn a new vocation. Maybe finally get my baking business off the ground.”

For fucks’ sake. No. I’m going to continue to get my affairs in order, and eventually I am going to fucking die. I am going to keep losing abilities you take for granted, like feeding oneself and scratching your nose and breathing and not peeing your pants. In the meantime, I am going to continue to collect stickers, watch cartoons, and pet my cats until I can’t, and then? I am going to die.

Because ALS is a motherfucking terminal disease.

Three more weeks and one more day of this bullshit conversation replaying itself over and over. Three more weeks and one more day of pretending I’m leaving because I want to, and not because this disease is forcing me to. This has made me extra specially grateful for all of the people with whom I can actually have that frank conversation – the ones who don’t pretend not to notice that my hands are no longer working. The ones who, if they actually asked that question, I could out right tell them “die”. But they know better to ask. Because they already know. So instead they ask how my cats are doing (they’re good!), if I’ve found a house yet (not yet! The housing market in Portland sucks major ass), how well does SSI pay out (not well, but my job has awesome supplemental disability benefits)? Better, more important questions.

Death positivity kids. It’s sorely needed. I crave it like sugar and hugs. I want, I NEED to be able to have these conversations without feeling like I’m intruding on someone’s fragile psyche. Instead of what do I plan to do with my time, like it’s some summer vacation, I would rather people ask me if I have my affairs in order? (Almost!) Do I have a living will? (Yes! And a POLST form!) Do I had support I need the time I have left? (I think so!)

Three weeks and one more day. Before I can get on with the business of dying, instead of pretending like I have some plan for my future.

Because I don’t really have one, anymore.

And you know what? That’s okay. It’s normal. Not everyone gets to see 50. It sucks and it is sad, but it is normal.

Unlike this stilted-ass conversation I keep having with y’all.

Hypocrite

Me: “Some diseases are invisible. Just because you can’t physically SEE pain, doesn’t mean it’s not there. It’s not up to you to validate someone’s disability; no one should have to prove they’re ill. There are no ADA police to determine who qualifies as disabled or not.”

Also me: “Motherfuckers buying ADA seats at theater performances should have to fucking PROVE THEY NEED THAT SEAT. I am so sick of shit selling out because some bitches with no actual mobility problems bought out the only SIX goddamned wheelchair spots in the whole fucking theater! WHAT IS YOUR MOBILITY PROBLEM, MOTHERFUCKER, THAT YOU NEED TO SIT THERE.”

….This is why, anymore, I don’t ask friends to join me at events. I don’t wanna see five mobility spots taken up by four able-bodies schmoes and me.

Tick Tock

One month as of tomorrow.

Four weeks and five days.

Twenty three working days.

If the cube move happens on schedule, which I doubt, ten more in-office days.

And then two weeks of paid vacation.

And then?

The rest of my abbreviated life, I suppose. The real work begins to find the home I’m going to die in, to make it a place I can live in until that happens, and then finally – FINALLY – my immediate life can be all about just dealing with my symptoms as they come. To deal with my abilities as they go. To actually live the rest of my life until I’ve had enough.

Some not-insignificant part of me is grateful to have an Out of the workforce. It’s a forced retirement, but it’s an escape from the 9-5 capitalist bullshit that has eaten the prime years of my life. The prime of yours, too. I’ve always been a damn Liberal, but more than ever, I am seeing the absolute stupidity of the 40 hour workweek. The need to work, to justify your living with a paycheck.

And it IS a justification.

I’ve seen sneers turn into surprised respect when I tell people what I do for a living. Yeah fucker, this weird-haired, pierced and tattooed bitch has a real life respectable job that requires actual smarts. I earn more money than you, asshole, surprise.

And with the surrender of my employment comes a surrender of that piece of me, that legitimacy in the eyes of strangers that should mean fuck all and yet…it does. It really does. I wish it didn’t. I know it doesn’t mean anything, not really, but our fucking capitalist society has keyed so much of our identities into our paychecks – and who provides that paycheck – that it is going to be really hard to let that go. From being respectable to being a goddamned leech on our social security system even though I HAVE PAID INTO IT MY WHOLE WORKING LIFE, YOU ASSHOLES, I DESERVE THIS BECAUSE I PAID FOR IT AND IT IS MINE. I paid to let your grandma afford her groceries, would have paid more, gladly, as I earned more, to share what I have. That’s what social security is FOR. That’s why we have it. And yet now that it’s time to cash in, even though it will be a very limited time, I feel less than deserving. Am made by much rhetoric and many conservative motherfuckers to feel like I deserve nothing.

Believe me, fuckers, I’d rather be working instead of dying.

One more month of being valid.

Four weeks plus five days plus two weeks vacation.

One more month of being a job instead of a person.

Six weeks of being justified in my existence.

This is such unbelievable bullshit.

Bent Out of Shape

Holy SHIT people are angry about straws right now.

If you’re lucky enough to be completely ignorant of what I mean, now is a GREAT time to stop reading this entry and move on with other happier aspects of your life. No one would blame you. It would probably even save you some heartburn, because damn, there are a Lot of Opinions on the Internet right now.

Quick backstory: a picture of a turtle which had ingested some plastic straws (do not Google it, it’s super sad) has gotten a lot of people up in arms and clamoring for a worldwide ban on plastic straws. Whole and complete, no exceptions. PLASTIC IS EVIL AND MUST BE ERADICATED. This is a great and noble idea, and I fully support nature conservancy and saving the planet and all of that other awesome stuff. Go Mother Earth.

The problem, of course, is that some people actually fucking NEED plastic straws.

I have read more disability erasure bullshit in the last couple of days than I have read probably in the last year. Actual sample quote: “Why is this even a question? You just pick up the glass and drink from it, how hard is it? No one actually needs a straw ever.”

…Well, Susan, you ableist piece of shit, it actually is NOT that fucking easy. Friends who have been out with me to restaurants recently can attest to this, as they have uncomfortably watched me attempt to drink from a water glass without one. With my current rate of disability, picking up a drinking vessel means clasping it between my two fists (because MY FINGERS ARE USELESS GARBAGE MEAT NOODLES) and taking a sip before placing it back on the table, hopefully without spilling or running into anything. If I can pull it off and get the glass back to the table with a simple clink of glass on ceramic plate, I’ve done well. But that’s becoming impossible. FUN SCIENCE FACT: WATER IS HEAVY.

…I need a goddamn straw.

I currently carry around paper straws, for these instances. They’re still pretty wasteful, but it’s a compromise. Carrying around a reusable one is not practical, because I can’t operate fiddly little brushes or squeegees to clean the thing when I’m done with it, necessitating me to carry a sticky dirty straw in my purse until I can get home and ask someone to run it through a dishwasher for me. In a life already fraught with humiliating reliance on other people’s kindness for the simplest dumb stuff, and existing as an increasing imposition on others, a reusable straw is just one more fucking thing to have to ask people to take care of on my behalf. Paper straws are a concession to my disability and a temporary compromise for conservation.

I actually use a lot of disposable things, and feel ashamed for every fucking one. My liberal snowflake heart cringes every time I do, but using paper plates means I can actually lift the thing without spilling food all over my lap because ceramic is too heavy. Using a paper cup means a condensation-slick glass is not going to fall out of my hands and soak my bed when I try to quench my thirst. My hands don’t work well enough to clean out the cat food tin, so it goes in the trash. Every item disposed of makes me feel incredibly guilty, but these are things I have to do now. I don’t have the privilege of washing dishes anymore, or making my life more difficult in the name of reduce, recycle, reuse. It is an inconvenience to you, and a Major Fucking Undertaking to me. And I know in my heart that this is completely understandable, these are sacrifices ALS has demanded of me, and in the grand scheme of things, the amount of trash I accumulate is really not that big a deal.

Not to hear Susan tell it though. I am single-handedly raping the planet because I need a plastic bendy straw.

There’s an awesome chart going around on the Internet right now, and I’ve had the occasion to share it many, many times over the last few days. I’ll share it here, too, because it’s goddamn useful and I am tired of explaining why Product X is not a universally viable alternative to a disposable bendy plastic drinking straw. Observe:

Useful Chart of Usefulness

Currently, I have the luxury of getting away with paper straws. Keyword here: LUXURY. Soon though, soon that will not be an option. The day is coming when I’m only able to slightly turn my head to the side to get a sip of water. Eventually, not even that. I will not be able to lift my body and position myself above a cup with a straw sticking straight up out of it in order to hydrate myself. I need that stupid little bendy thing, that corrugation that makes it almost impossible to make out of any material but plastic and makes cleaning a major undertaking instead of a quick rinse in soapy water. I need the straw to be positionable, and I don’t have a devoted full-time staff who are able to hold a cup to my lips in order to hydrate myself, or constantly wash my dishes, and all of the other things that you don’t even really think about. Because you’re not disabled and you don’t have to.

But I think about them. Because I have to.

I’m learning new things all the time, myself. Before the above chart, straws as a choking hazard didn’t really even occur to me, but now that I think about it, of course they are. Of course putting a rigid thing between your teeth is an injury hazard when your jaw suffers spasticity and clamps down for no reason. Of course temperature tolerance is going to be a concern, when you are relegated to an all liquid diet and not just sipping cool drinks or refreshments. These seemingly no-brainer ideas are new to me, even.

So I’m simply asking that maybe you pause and think about these things too, before you go off on me and people like me who actually need the fucking things. Understand that the ability to do without straws completely is a luxury. Understand there is no simple answer to the horrible problem of plastic waste. Understand that consumer waste is a tiny fucking fraction of this problem, and huge corporations need to be held much more accountable for their part. As the chart says, the burden of a solution should not rest upon this shoulders of the disabled. We are the victims of this problem, not the fucking perpetrators.

Someone who thought they were being clever asked what people did before the invention of straws then, if they are so necessary? Medical professionals answered bluntly: people aspirated liquids, got pneumonia, and died. Plastic straws are LITERAL FUCKING LIFESAVING MEDICAL DEVICES.

So Susan, I’m extremely happy for you that your reusable plastic cup and rigid ass plastic straw is a viable option. For you. Captain Planet would be really fucking proud of you. Go ahead and wear that gold star. Just please recognize that other people on this planet exist, and that your solutions are not perfect ones. Recognize them for what they are. A good idea. A place to start. The beginning of the necessary conversation.

And understand you’re not taking my plastic bendy straws away from me until I’m dead. You can quite literally have them over my dead body.

Biding Time

I have about 9 weeks of work left (7 weeks of actual work and then 2 weeks vacation). Until that time is over, I can’t exactly be as candid about work as I’d like in certain situations, and be public and honest about all the reasons I’m very, very, very glad to be leaving. Dumbass CEOs firing 10% of the global workforce to please the shareholders, lecturing his employees about business ethics and integrity after getting busted doing insider trading, and THEN getting caught having an affair with an underling aside. (Bye, Felicia)

I can tell you, though, that I’m really, really glad to be leaving my particular job. I’ll miss the idea of work, the regularity, the sense of being needed, and a lot of the coworkers that I’m leaving behind, but I’m very glad that an end is in sight to my working career. Frankly, the job’s become kind of a piece of shit lately and the universe is telling me it’s time to be gone.

Perfect case in point, my manager asked what I would like to do as a goodbye celebration. I told him I wasn’t sure I even wanted to HAVE one, since I’m not exactly leaving for very happy reasons, and I really don’t want to be around a bunch of people crying or looking at me with pity for a couple hours, or talking about literally anything else. Not my idea of a good time. I kind of just… want to sneak out the back. Coworkers that I had personal attachments to had their chance last year to say goodbye at my wake. He said that was fine, but I should know there were lots of people who wanted a chance to say goodbye after almost ten years of working with me, and if I did not want to a going away thing, then that was my choice, but I needed to let him know so that he could inform me coworkers in Arizona that if they want to say goodbye they would have to make their own arrangements.

I flat out told him that was emotional blackmail. But I conceded that a going away thing wasn’t about me at all and I would think about it. He told me to pick a time and a place and let him know when I’d made arrangements.

…The FUCK I am going to plan my own going away party.

It’s already shitty that for almost the last 10 years, I’ve been performing the team’s emotional labor on my own (practically. James was really good at picking up some of it and made a point of not treating me like a fucking admin, while he was on our team). I am not going to plan, organize, and make reservations for a party – for MYSELF – that I don’t even want. I’ve been sending flowers for every, birth, wedding, and death in my team. I got nothing when my father died. …because I wasn’t there to send *myself* flowers.

It’s definitely time to go. If I weren’t leaving the team, the company, the workforce as a whole, I’d sure as shit be leaving this particular team anyway. Probably the company. We ceased giving a shit about each other a long time ago. That really sucks, because I miss the team we used to be. The team that hung out after work together for Beer Tuesdays and invited me even though I think beer is gross. The team that genuinely gave a shit about each other and had fun even when the work itself sucked so much ass. I miss that camaraderie.

The old team sure as fuck would not have told me to throw my own goddamned retirement party.

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.

Spoiler Alert: #everyonedies

Today’s post comes with story time!

Story one:

I’m walking with the cane into the cafe. There’s a girl who works there that I smile and say hello to practically every day. She notices the cane, today. I don’t always bring it down when I get a drink, but today I have. I’m a little wobbly, anymore.

“OH no, did you hurt yourself?”

“No,” I shrug, “I have Lou Gehrig’s. I’ve just gotten weak enough finally that I need this a lot.”

“Oh, god, I’m sorry, I’ve heard of that. Is it painful?”

“Oh no, nothing hurts, really, but it’s just a loss of strength over time. I guess that’s a good thing, nothing hurts even if you ARE dying slowly,” I half-joke.

“Well aren’t we all,” she smiles back.

“Truth,” I tell her, and we part ways.

Story Two:

We’re walking to a restaurant, my coworkers and I. We parked kind of far away, and I’m struggling a little with my cane, to keep up with the crowd.

“Keep up,” he jokes, falling behind to walk next to me.

“I’m trying,” I tell him, grinning. “Y’all bastards walk too fast.”

“Well maybe you’re not trying hard enough to keep up,” he teases.

“Yeah sorry, everything’s slow with me. Neurons burning out, walking, you name it. I’m *sorry* I am slowly dying,” I joke.

“Well, everyone’s dying,” he shrugs.

“Some of us just take the fast track,” I tell him.

The Rant

Please, please stop saying “well technically everyone is dying”.

Please.

It’s like when the cashier is ringing up your stuff and something doesn’t scan and you snort, “well I guess it’s free.” It’s a dumb joke, everyone’s made it, she’s heard it a thousand times. And it’s already old and it wasn’t funny in the first place and you’re not that clever, just pay for your shit and leave. And you know it’s a dumb thing to say, but you said it anyway, and will say it again, but everyone politely laughs even though no one thinks it’s clever.

Only, …no. Okay. It’s not really so much like that. It’s..

It’s dismissive as FUCK is what it is. Yeah, okay I get it, everyone is dying slowly. We are all biding time until our own demise. Everyone, eventually dies. MEMENTO MORI.

When you tell me, “yeah well we’re all dying, right?” I know you’re trying to soften the blow. You’re trying to comfort me in a way, to include me with the rest of the human race, telling me that death is normal and it’s okay. To make light of the situation. And I will always, always joke back.

But I don’t want to.

What I WANT to say is “fuck you”. You’re completely dismissing my death. You’re diminishing the sadness of my struggle. You’re telling me that I’m nothing special, that my disease is no big deal. Everyone dies. So what? My disease will kill me but hey, everyone eventually dies anyway so what does it matter? What do YOU matter? What are you whining about? Everyone dies, so what.

So what? Yes, everyone dies. But YOUR book has a billion potential endings. Boating accident! Heart attack! Cancer! Pneumonia! Peacefully in your sleep with your loved one by your side! Gun accident~! You could die of ANYTHING! You could die during sex! You could die from mountain climbing and being exposed to the elements! You could join an international drug cartel and be gunned down on the private air strip in Boca Raton when Louie rats you out! You NEVER should have trusted Louie! You could fall on the sidewalk and hit your head JUST SO and become brain dead until your tearful mother signs the paperwork and they pull your plug. Choose Your Own Adventure Death! If you would like to die of accidental CO2 poisoning, turn to page 56!

My Choose Your Own Adventure book has three possible endings. A long, lingering loss of ability and strength, humiliation, frustration, and fear that ends in…..

OPTION ONE! Sudden accident. I mean, anyone can get hit by a car, randomly, or some freak accident, lightning strike, store robbery gone wrong. Anything could unexpectedly kill me. We’re even on that front.

OPTION TWO! Suffocation! I choke on my own spit, unable to breathe because my muscles have all atrophied and I can’t swallow or take a breath and eventually I choke to death. Drowned in my own spit.

OPTION THREE! Suicide! I decide somewhere along the story that I’ve had JUST ABOUT ENOUGH, thank you, and take some pills if I can still swallow, or push the meds into my guts via feeding tube.

THAT’S IT. Those are my options. Your roadmap to life has a lot of lingering little trails and you never know where they’re going to take you. You might decide to become a mountain climber at 60, you might die tonight, you might waste your life away at some meaningless job until you have a heart attack at your desk. Your maps are open and wide and the ends aren’t known but the possibilities are endless. My map branches three ways, and there are many many stops along the way. Loss of walking. That cuts off a thousand roads. Loss of hand/arm movement. Well there’s a ton of other destinations crossed off my map. Unable to eat. Well that’s a lot of stuff closed off to me, what with the wheelchair and the feeding tube and hell, you need a special van to travel now, you can’t just pick up and go. So my destinations are the trauma ward, a palliative care hospital bed, or a dose of pentobarbital in a place of my choice.

We’re all dying. Some of us have our stories written, and the endings are not happy. There is no happy ending for ALS. And when you compare your unwritten book to my Cliff Notes, it’s insulting.

Your story probably does not have chapters in it about falling for absolutely no reason and getting a really horrible looking scratch out of it but not allowing yourself to show pain because the people you’re with are freaking out that you fell and you have to assure them you’re okay. It probably does not feature you cleaning out a cat box and breaking out in a sweat over that small, stupid effort. It probably does not feature a feeding tube or respirator as a given course. It likely does not have six introspective chapters, each titled some variation of HOLY SHIT I AM GOING TO DIE IN A REALLY FUCKED UP NIGHTMARE WAY AND I KNOW IT’S COMING. Your story might have a little chapter about being embarrassed in front of someone when screwing up something you were trying to say, but I doubt it has six paragraphs afterwards wondering if that was a one time fluke or is it a sign your tongue is starting to atrophy too? Did I enunciate when I was on the call with my manager earlier? Is this guy saying ‘what’ because he didn’t quite catch what I said or because I have lost the ability to speak and he literally has no idea what I just said? Your book has going to work and going shopping, but does it have a pre-chapter about managing a ride that isn’t going to be too hard for you, or not purchasing #thing because you’re not sure you can lift it up in the cupboard where you’d like it to go? Your story’s ending is unwritten. Mine is written in stone, carved by hands that no longer have the power to pick up a chisel.

Telling me “everyone dies” is the same as co-opting #blacklivesmatter into #alllivesematter. You’re technically correct AND YOU ARE COMPLETELY MISSING THE POINT. And diluting the original message with your vapid need to be included. Of COURSE everyone dies. Of COURSE all lives matter. BUT THAT IS NOT WHAT WE ARE TALKING ABOUT RIGHT NOW. You are dismissing the message and selfishly, HORRIBLY, turning the story about you. In telling you that I am dying, I am not saying no one else dies and no one else has to mourn. I am not dismissing the value of your mortality. I’m not denying your story has an end. I’m telling you mine is brief. As someone put it, by saying “save the rainforests” I am not saying “fuck all the other kinds of forests, they’re deserving of destruction”. By saying black lives matter, it’s not to say others DON’T. To say that I’m dying is not to say that you aren’t.

It’s the same, also, as when you tell a friend your woes and s/he says, “That’s okay, I lost my job today.” IT IS NOT OKAY. YOUR PAIN DOES NOT DIMINISH MINE. You have a right to your suffering, and it does not trump or cancel out anyone else’s. People will often try to one-up your sadness, and I’m guilty of doing this too, sometimes, and it’s a horrible, horrible thing to do. I don’t understand what the point of it is. I see your suffering and raise you “my keys got locked in my car”. Your pain doesn’t matter, because I have a completely unrelated circumstance that I somehow have determined is more impactful than yours and therefor I am suffering worse and I WIN at the FML game! And LOSE at Friendship and Human Interactions! And I leave with a parting gift of making your situation worse by dumping all over you when you wanted comfort from me! I’m going to put that statement again in its own line, because it’s important.

YOUR PAIN DOES NOT DIMINISH MINE.

We are all dying. Some of us just know the way. And if you don’t, then I’m happy for you. Seriously. I rejoice with you in not knowing your end. It’s an amazing, free world of possibilities and I’m delighted you get to dance in that sunshine. I will read my own story, and dance as long as I can, while the rain comes, before I’m washed away. Both of our stories are fantastic pieces of literature, but because I got a sneak peak into the last chapter, it doesn’t make my book any less worth reading. Your book’s unknown end chapter doesn’t make your book better than mine, or different. And when I tell you the plot, you don’t have to tell me that EVERYONE’S story finishes. Because of course it does. I was just trying to tell you about mine for a second.

And I joke about it, because it’s a sad thing and I try to keep things light; but I want you to know that it’s crushing when you dismiss me like that. Everyone dies. Yes. This is an unfortunate fact. A fact that does not change that I have a terrible disease and I’d like to be able to talk about it without it being diminished to a non-problem by the words “everyone dies”. You don’t need to one-up this. You don’t WANT to one-up this. It’s okay. Just say ‘sorry’ or shrug and agree, or laugh with me about it, or tell me to man the fuck up, tell me anything but that I am insignificant because of course everyone dies. And none of this matters. Because I fucking matter. If I didn’t, you wouldn’t be wasting your breath to piss me off with those words.

Everyone dies.

Some of us have a story they’d like to tell, before that happens. Not because they think it’s the best book. Not because they don’t think you have one, too. But because they think it’s worth reading. So, thank you for reading mine, so far. I hope it’s been worth it.

Everyone dies, but I guess not everyone gets to blog about it, yeah?

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.

Password what?

Yyyyyyyyeah so that last post is locked down because it’s not really appropriate for the public.

I was/am very, very angry about A Thing, and wrote about it. I am angry about Some Things in general, and I also wrote about those because they’re related.

Those will probably get their own post because they’re not specific. The Thing was very specific and angry and name-cally and not really something I should put up here. But I WANT it here, because writing it made me feel a lot better, and I want to remember every piece of this. It borders on libel so it’s private, but it’s a piece of the map. I poured my anger into a post that belongs here, but there are definitely some things I probably shouldn’t say out loud. Which SUCKS! I’m DYING! I should be allowed to say WHATEVER I WANT!

But I realize I can’t. So when I’m gone, that post will be unlocked. <3 Just wanted you to know whyfor that last thing.

Bathroom Bitching

I promise this isn’t really TMI, but I’m gonna talk about the politics of bathroom stalls. And a personality defect of mine, it turns out.

I’m getting weaker; even if DocGos says she doesn’t notice any difference. When we first met, I used to be able to walk up the stairs with two hands full. Now I can’t; I have to have one hand free for the rail, and on no-spoon days I need both. When we first met, I could stand up on my own from sitting in a chair. I really can’t anymore.

Which means I need the handicapped stall now – I need the bars. Well, it’s like the cane – I could probably manage without? For awhile longer? But it’s so much easier with, and why make my life harder just to prove to myself that I can, that I’m still an independent woman who don’t need no man. erm. Bars. Yes. Bars. That’s what I was talking about.

And because I need the bars, I am trying really really hard to not be bitchy about it when someone who clearly does NOT need that stall is in it.

Okay – confession. I have *always* gotten a bit internally bitchy about people using the stalls when they don’t need to. It’s a serious character flaw of mine – I get bent out of shape when people don’t follow The Rules. I get irritated when someone cuts someone else off in traffic. Even if the person cut-off doesn’t even notice. I get irritated when people cut in line, even if I’m not in that line. I get mad when people at work leave their dishes in the bathroom when the stinkin’ break room is LITERALLY ten feet away. I get SO MAD when people don’t break down their fucking cardboard boxes and just leave them in the hallway. It’s because I tend to get really mad on behalf of other people, whether they even realize they’ve been wronged or not. By cutting that guy off, by sneaking in line, by not taking your dishes in, by not breaking down your cardboard and putting it in the recycle area, you are making someone else’s life more difficult because you are a selfish ASSHOLE. Even if it’s just a minor inconvenience, there was still no need for that inconvenience to exist, you just created it because you are a LAZY SELFISH DICK. And so I get mad. Because you are not following The Rules.

…Bitch.

ANYWAY. At work, we have a huge wheelchair stall, and the normal sized one next to it has bars, so it’s awesome and I use that one, because I don’t need the space, just the help up. But consistently – CONSISTENTLY – the wheelchair stall is taken up. By tiny, tiny women. Like, a regular stall would feel large to them, WHY do they need the extra extra space? It’s always been a phenomenon that made me scratch my head, but there’s actually been a couple of times that it’s made me wait. And I try not to get irritated, but seriously.

YOU ARE FIVE FEET TALL AND 80 POUNDS SOAKING WET WHY DO YOU NEED A TEN SQUARE FOOT BATHROOM STALL.

Answer: YOU DON’T.

So when I go in there, and both stalls are taken, I have a choice between using one of the other ones, and then using the freakin’ toilet paper dispenser to pull myself up and hope to GOD it doesn’t come off the wall, or wait. And if I don’t have my cane with me at the moment, then they look at me weird for waiting. But if I DO have my cane, sometimes they have the good grace to look abashed. Usually not – they’re oblivious, because people at my work are very self-involved. See: previous posts about trying to not get knocked the fuck over in the cafe and halls because they’re not paying attention.

I wonder if, when I’m in a chair, I’ll be any more irritated. Maybe I’ll do the passive aggressive thing and put a note on the door: “THERE IS SOMEONE IN THIS BUILDING WHO ACTUALLY NEEDS THIS STALL – DO YOU?!”

In Comic Sans, natch.

Realistically, I probably won’t. I’m really good at ignoring those breaking The Rules when it’s me getting shafted. Though, I did get really irritated this weekend about it – I went to Bingo at an American Legion lodge (looong story) and wound up waiting for ten minutes for the one handicapped stall. The other two were simply too wide, I wouldn’t have been able to brace myself on the walls to stand, they were just too far apart. There was a line, and I as time went by I started to say kinda loudly every time someone asked if I was in line, “Go ahead, I have to wait for the handicapped stall, I need the bars.”

Man, I dunno WHAT she was doing in there. She took her shoes off at one point. I thought she was changing her clothes, but she came out with nothing but herself. And flushed a HOJILLION times and used up most of the toilet paper. I just…man. Yeah. She was old, there’s all kinds of stuff happening there that I don’t even know. Probably best that I don’t know. I just know I had to wait ten minutes to pee and she totally could have used the other stalls.

This is all the beginning of the inconvenience, the social stage of decline, and it will be really interesting to see how I adapt to it when it gets worse. Maybe I really WILL become the Bathroom Stall Avenger. Maybe I’ll just pull an Elsa and let it go. It will be telling, either way. Just as I’m discovering the true character of those around me, I’m discovering what I’m made of, too. I have kindness and patience I didn’t know I possessed, and intolerances I didn’t know I had in me.

I’m building my character even as my body unbuilds itself.

Assistance

(Okay, sorry, it’s been a long time but I knew this post needed to be next and it was really hard to think clearly about. For reasons that will become very clear. This post won’t be a happy one, I wager.)

There’s a chair, a table. The table has three prescription bottles on it. The chair is draped with colorful striped fabric. She enters the screen, sits calmly, and smiles warmly at the camera. She picks up one of the bottles.

“I got my prescription today, to end my life when I see fit.”

She says it with a little difficulty, but it’s ALS, not emotion, that makes it hard to talk. She’s calm. Confident that she’s made the right choice. Beautiful. She explains she’s not going to take it, not today, because life is still too good. She thanks everyone for supporting her decision to choose. She has bulbar onset ALS and while she’s lost the ability to swallow anything, she can still speak; which is good, she says, because she has a lot to say. She puts the bottle on the table, and she tells her viewers how much she loves them all.

She glances at the prescription bottle on the table, almost lovingly, and faces the camera. Her warm smile brightens her face again, she is serene. “It’s a good life,” she says. “Live it.”

______________________________________________________________________

Assisted suicide. Death with Dignity. Voluntary Euthanasia. It’s an extraordinarily controversial topic. It’s something I’ve had strong opinions on ever since I heard of Dr. Kevorkian. It’s something I’ve thought about a lot since ALS became a possibility for me, and it’s been on my mind almost every day lately thanks to Brittany Maynard.

If you’re not familiar, congratulations, you’re probably one of the five people who’ve escaped this story. You can read it here. The short version is, she was diagnosed at 29 with terminal brain cancer, was told she had months to live and an excruciating death waiting for her. So she chose to end her life under her own terms. She openly talked about how she would do it, and knew exactly when. November 1st, she took her medication and died.

It’s polarized the world it seems. Everyone has an opinion. She had the right, she did not. She was choosing to die with grace, she was a coward committing suicide. She was strong and brave, she was thwarting God’s plan for her. Opinions were very strong, debates were very heated, and theoretical relatives were killed daily in debate, by agonized suffering or suicide, and everyone thinks they know what is best. And everyone – EVERYONE – had something to say about it.

And maybe some day someone close to you will need to decide on this option. Maybe an aunt with cancer. A father who gets into a terrible accident with injuries incompatible with life. Or God help them, someone with ALS. If they live in a select handful of places, they will have this option to choose. They will have this conversation several times with a medical professional. And if they choose to die, they will pay an obscene amount of money for a prescription to die, because it is OH MY GOD EXPENSIVE and insurance will not cover it. (Which is stupid, really, you’d think the insurance company would pay YOU to stop costing them so much.) But they get the prescription, and maybe they take it, maybe they don’t. Whatever side of the fence you’re on, whatever opinion you have on the subject, allow me to make one thing abundantly clear for you.

YOU GET NO FUCKING SAY IN THIS DECISION.

Absolutely NONE.

There is no debate. You get to sit the fuck down and shut your face when that person makes that decision. If they ask you how you feel, fine, but know that you do not get ANY fucking say in what they decide. You can have all the arguments in your head that you want. But if someone makes the choice to die, and their doctor agrees? Then it’s done. You have no right to interfere with it. At all. Keep your opinions. Honor their decision. If you disagree, fine, but know that it makes LITERALLY NO DIFFERENCE.

Comfort them in their last hours, support them until their final days, and keep your goddamned opinions to yourself.

_______________________________________________________________________

I was 24 when Jack Kevorkian came into the public’s eye, when he was arrested and then later sentenced for murder because he’d helped terminally ill people to die. “Voluntary euthanasia” they called it then, in all of the court reports and news articles. Now it’s more bluntly called “assisted suicide”. They mean the same thing, but ‘assisted suicide’ has more of an accusatory feel to it and so that’s what people call it now – because Society Does Not Approve.

“It goes against God’s plan,” is the most used argument against it. “This happened for a reason and you are giving up.”

“It’s Death with Dignity,” is the most used argument for it. “It’s a humane close to an inevitable ending.”

And even then, as these two sides yelled at each other and called each other “murderer” and “sadist”, my 24 year old self thought about it with a calm heart and careful deliberation. “If I were ever in great pain and going to die eventually,” I decided, “I would want to kill myself. I think people should have the right to die on their own terms.”

And my 38 year old self thought about it with the same calm and deliberation. “If this turns out to be ALS,” I decided, “I want that option available to me.”

And my ten-days-away-from-being-39 year old self stared at the carpet for a moment, letting the diagnosis wash over me, and I thought about it with calm and deliberation. ” I’m really, really happy that I live in a state where it’s legal. I need to figure out what is my breaking point so that I can get the process started before it’s too late.”

________________________________________________________________________________________________________

Spoiler Alert: I’m going to get that prescription. I am very probably going to take it.

And you know what? There’s not a MOTHERFUCKING THING you get to say to me about it. This is MY choice. This is a step *I* will take if I want to. I know what’s best for me. I know how much I can handle. You don’t. And you don’t get to dictate to me when I can die.

I already know how my story ends. I’ve seen the last chapter, and it’s terrible. I want to be able to close the book before it gets that far. It’s a shitty close to a pretty good story, otherwise. “Died happily, surrounded by loved ones” is a much more kickass end chapter than “died slowly, suffocating and starving, languishing in agony at not being able to interact with those she loves while watching them steadily stop coming by and trying to talk to her because it was sad and awkward”.

You DO have the right to think and feel anything that comes your way. Even if it’s the bullshit idea that “this is God’s plan” which I will NEVER, EVER ACCEPT. If it’s in God’s plan that I should die like this, then God is a jerk. I don’t believe God hates me this much; I just believe that shit happens. And this sucks. And it’s no one’s fault. And that’s okay. There doesn’t need to be a plan or a reason for this. But if you feel there’s some proper reason for this, that’s fine.

I would never dictate to you how you should feel. It’s not my right, and not my place. Your opinions and your feelings are as important to you as mine are to me. Even if you disagree with me, it is entirely your right. I might debate you on logic, but I can’t and I won’t debate you on feelings. I respect your right to disagree with my choice, but that does not give you the right to interfere with it.

I would never presume to tell you how to feel, because I can’t know. But I will tell you not to presume to know, because you can’t feel.

You’re even welcome to share your thoughts and feelings with me. Just know that it’s going to make absolutely NO fucking impact on my choice.

I don’t know what my breaking point will be. It sort of shifts around, some days I think I can live with things that I can’t fathom, other days. And it may well turn out that I don’t think it’s really all that bad, even at the end. It’s amazing what you can get used to, if the change is gradual. I may think that spending my entire life having ten minute conversations that consist of three words is okay, that being an active brain in a meat shell completely at the mercy of everyone around me is a perfectly decent way to live.

I currently think I probably want to die before it gets that far. The last thing I want to leave is an impression of being a burden. Even if it’s not true, I know that I will start to feel like people are resenting me for being useless, that they’re tired of me taking so fucking long to get anything across with my stupid little eyegaze tablet. Even if I know it’s not true – and I do, I know that I’m loved and people would happily shoulder me for as long as I need them to – I know I will feel that way. Because I know me better than anyone. And that might be harder to bear than the humiliation of having my diapers changed. That WILL be harder to bear.

Some days I think that my mind is active enough, I’m solitary enough, that I’d probably be okay to be so isolated, as long as I have a sliver of communication.

Some days I think, when I’m no longer able to eat.

Some days I think, when I can no longer breathe on my own.

Some days I don’t think about it at all.

I just know that I need to do it, if I’m going to, before I’m no longer able to do it on my own. You have to do it yourself. And even if it’s someone putting the meds in a feeding tube and putting your hand over the syringe so the weight of your hand pushes the meds into your stomach, it has to be you. Which is right and proper, because I could never ever ask someone, “Will you help kill me?” Even if I have people who love me enough to be willing to go that far to help, I would never ever ask someone to carry that burden. It has to be under my own power.

And it could very well be that I’ll get that prescription and never use it. I’ve been told that many more people get it than use it. And that’s okay. But I want the choice to be mine. And I want that option. I want that right, and that power. That decision belongs to me.

And when I die, be it by time or by chemical, you guys can do whatever you want to celebrate or mourn me; throw a party, get drunk, burn my sticker collection. My funeral will be for you – but my death is all about ME. You can decide to celebrate or curse me however you like when I’m gone, it makes no difference because I’ll be absent. And you can celebrate or curse my choice, and it makes no difference, because you’ll be absent. It’s the last and most intimate experience anyone ever has on this earth, and it’s personal and private. Sacred. No one can encroach on that space. No one should ever think they somehow get the right to think they can tell me how to die.

You only get to decide for yourself whether you take my decision on death with dignity.

INTERNET uses ICE BUCKET CHALLENGE! It’s SUPER EFFECTIVE!

(edit: Oh my dear, precious, sweet sensitive children. How ANGRY you all are. I didn’t write this in perfect seriousness, which I would HOPE was obvious (hyperbole is fun and mental! It’s fundamental!) but I also don’t expect to actually convert anyone to the cause with it. I don’t use gentle, persuasive tones in this piece because I’m not trying to be gentle or persuasive. It’s not a rally, it’s a rant.)

Seriously, world, why all the hate?

I realize that humans are hateful, spiteful creatures and will find a reason to hate on even the most innocuous things.

Awww a sweet boy-meets-girl love story! WHERE IS THE REPRESENTATION FOR THE GAY COMMUNITY!? Uh. Okay. Here’s a sweet boy-meets-boy love story then! WHY ARE YOU SO GENDER BINARIST? HUH? Okay…here’s a ..person meets person love story? WHERE ARE THE PEOPLE OF COLOR AND THE DIFFERENTLY ABLED CHARACTERS? Well I only wrote this with two people total… OH SO YOU ARE BIASED AGAINST POLYAMORY HUH? AND WHAT ABOUT THE ASEXUALS? THIS IS VERY OFFENSIVE.

Seriously, people, calm yo tits.

YOU ARE ASSUMING I AM FEMALE. I AM OFFENDED.

No I’m assuming you’re a bitch.

THAT IS INCREDIBLY SEXIST AND YOUR BLOG IS PROBLEMATIC.

Well my LIFE is problematic, fucker, so what. But while you’re here and angry, my little social justice warrior, let me explain the difference between ACTIVISM and SLACKTIVISM. And why the Ice Bucket Challenge is both, and why that’s okay. (tl;dr – IT IS OKAY BECAUSE IT IS FUCKING EFFECTIVE)

I have a deep-seated hatred for a lot of ‘awareness’ campaigns. I feel you. I cringe when I see pink ribbon bullshit on everything (SERIOUSLY SUSAN G. KOMEN IS AWFUL AND YOU SHOULD NOT GIVE THEM YOUR MONEY). I am actually ANGRY when those stupid games inevitably make their way around on Facebook again, where some girl sends a facebook message to all the other girls on her friends list asking them to post their bra color, or their handbag color, or shoe size, and not explain what that is or why. Let me run this by you:

22!

18!

10!

7!

293495!

…Are you now aware of breast cancer being a problem?

Well, yes, because EVERYONE IS AWARE OF BREAST CANCER. EVERYONE ON FACEBOOK KNOWS WHAT IT IS AND THAT IT IS TERRIBLE. But seeing a string of numbers on your friends feed does NOTHING. Except piss me off, because you’re wasting my time AND feeling smug about it.

This is slacktivism. “Post this status in honor of everyone you know who has died of cancer!” Okay, that does NOTHING. “Sign this online petition!” That does NOTHING. “Retweet this!” NOTHING. Nothing has changed because of you. When you post pictures of abused animals, you are actually HURTING your cause, because I do not like to see that and I will defriend your ass so fast you’ll see smoke.

Protip: If you are friends with the sort of people who need to be told that animal abuse is bad, YOU NEED NEW FRIENDS.

I can see why you might be tempted into Ice Bucket Challenge hate. But let’s see if I can’t calm yo tits FOR you. Hakuna your tatas, as it were:

1. “How does dumping water on your head cure a disease?” It doesn’t. Shut up. No one thinks it does.

2. “This is wasting perfectly good water.” Uh..we can’t send this one bucket of ice water to Africa. Just like the crusts from your sandwiches when you were a kid, this particular act of waste is not taking food/water directly out of the mouth of a person who needs it. If you want to be outraged about water shortages, go write a letter to Nestle and tell them to stop bottling water from drought regions and selling it.

3. “You bought that ice instead of just making some, you could have given that $2 to charity.” True. I also bought this soda, and this shirt, and my bus ticket to get to work. I have a LOT of money I could have given to charity. I didn’t. I’m just not that much of a saint. And neither are you. Until I see you selling your shoes to give the proceeds to charity, until I NEVER see you with a Starbucks in your hand or a store-bought lunch, you can shut it.

4. Most of the videos don’t explain what ALS is. No. Most of them are 7 seconds long, and it takes that fucking long to SAY Amyotrophic Lateral Sclerosis, never mind saying what the fuck it IS.

5. “You’re dumping water on your head rather than donating money”. That’s not necessarily true. In the original bet, it was an either/or. It’s evolved into an AND situation. You don’t get visibility into the bank accounts of the people involved, so you don’t get to see that part and don’t know for a fact that they aren’t. But a lot of people ARE. See #6. Also? There are some little kids doing this. Last I checked, 6 year olds don’t have $100.

6. “This is not doing anything to raise awareness.” You, sir, are a liar. And you should feel bad. Or maybe you’re so wrapped up in your cocoon of IBC hatred that you’ve not seen anything about the RESULTS. So let me educate you:

Today, the ALS Association reported that they have received donations totaling over 22.9 million dollars.

Last year by this time, they’d received 1.9.

Let me do the math for you.

In the last two weeks, the ALS Association has received ONE THOUSAND TWO HUNDRED PERCENT OF ITS USUAL DONATIONS.

ONE.

THOUSAND.

TWO HUNDRED.

PERCENT.

I have no statistic on how much of an increase OTHER ALS charities have seen. Oh wait, let me google that shit for you. Project ALS has raised $96,000 in a single weekend. Team Gleason isn’t reporting, but I know damned well they’ve seen a spike from co-opting this meme (bastards). The MND Association has certainly seen an upswing in donations.

The OTHER thing you don’t see?

Millions of people watching these videos, wondering what the hell ALS is, and then googling it. And learning.

THERE is your awareness, bitches. In these last two weeks, if even a THOUSAND people became aware of ALS without having been directly affected by it (because that’s cheating), then I’d consider it safe to say awareness has been raised. But tens of thousands of people now know what ALS is, when a month ago they were ignorant. And MILLIONS have heard the name.

How the fuck can you hate that?

You can’t.

Sit down. Shut up. Watch the fucking videos. Laugh. Donate some goddamn money. Lighten the fuck up.

ICE BUKKIT LOLZ

I’ve been getting OH SO MANY links to videos of people doing the “ALS Ice Bucket Challenge”. And just as many questions about how do I feel about this?

…That’s complicated.

If you’re somehow unaware of this whole thing, the ORIGINAL idea was put forth by a guy – NOT PETE FRATES, he did NOT start this, okay? – who challenged a friend to *EITHER* donate $100 to ALS research *OR* dump a bucket of ice water on his head. Once you do it, you call out three friends to do the same.

And it’s the EITHER/OR part that gives me mixed feelings.

People have missed the original intent. It’s gone beyond – with people just…dumping a bucket of ice water on themselves. Proudly showing the world that they *won’t* donate to ALS research, I guess? In fact they would literally rather pour ice water over their heads than give money to a charity. According to the original rules.

The most amazing star power has taken this up, and I really really really hope they’ve missed the point and are doing BOTH ice dump AND donate, because if Martha fucking Stewart won’t even slide ALS research a Benjamin? Seriously fucked up. But for the most part, it’s just become this machismo WOOOO ICE BUCKET YAY LOOKIT ME egofest. I’m really happy that nearly all of the celebrities I’ve seen do this make a point of calling it the ALS Ice Bucket Challenge and asked people to donate money to the ALS Association.

..except Steve Gleason. Fuck that guy. His “No White Flags” charity is a good one, but in his challenge video he’s co-opted it for his own fucking charity instead of the actual ALS Association, WHICH IS WHERE THE MONEY BELONGS. NO WHITE FLAGS, NO THUNDER STEALING, ASSHOLES.

The Ice Bucket Challenge has gathered a LOT of hate, too. “This is so fucking stupid. How does dumping ice on your head cure ALS? ”

Uh. It doesn’t. Which, No shit? No one really thinks brainfreeze will magically fix a terminal disease.

Is this promoting awareness that ALS even exists?

YES.

Holy SHIT yes. It’s completely unlike all of those stupid goddamned breast cancer awareness games on Facebook (“post the size of your shoe with a frowny face! teehee! Don’t tell anyone what it means!” HOW THE ACTUAL FUCK IS IT PROMOTING AWARENESS IF YOU ARE ACTIVELY REFUSING TO EXPLAIN WHAT YOU ARE DOING, YOU DUMB BITCHES) – promoting ‘awareness’ to something I’m pretty goddamned sure people are already aware of. Seriously. WHO HAS NOT SEEN THE MOTHERFUCKING PINK RIBBONS BEFORE. YES WE KNOW ABOUT BREAST CANCER K THX. (BTW SUSAN G. KOMEN IS A COMPLETE BULLSHIT CHARITY PLEASE STOP GIVING THEM MONEY, YOUR PRECIOUS PINK RIBBONS AREN’T HELPING DO SHIT. (Seriously Google that shit. They are terrible and have terrible policies. Don’t give your money to a ‘nonprofit’ that pays its CEO more than the motherfucking President of the United States.) )

Unlike breast cancer, ALS NEEDS an awareness campaign. I’ve often bemoaned the fact that NO ONE KNOWS WHAT THE FUCK ALS EVEN IS. Including ME before I was diagnosed. This is how it went when I told people before:

“I have ALS.”

*blank look*

*sigh* “…Lou Gehrig’s Disease?”

(half the time another blank look, but sometimes:) “I’ve…heard of that? I think? Is that bad?”

“It’s going to kill me slowly by turning me into a meat shell and then suffocating me, so yeah, it’s pretty bad.”

And now thanks to this whole ridiculous thing, I’m finding the conversation going like this:

“I have ALS.”

“Oh, shit, I’ve heard of that, that ice bucket challenge is going around. That’s pretty fucking serious, isn’t it? I’m sorry!”

It’s still not common to find someone who knows exactly what it is, but it’s a pretty good goddamned start. ALS doesn’t have a sexy celebrity spokesperson or a beloved childhood actor suffering from it, there’s no “star power” to my disease. The best we have is Stephen Hawking, and half the time people don’t even know who HE is, even after you say, “The scientist guy? In a wheelchair and talks with a robot voice? *sigh* He was on an episode of South Park?” And because human beings are FUCKING TERRIBLE ANIMALS, without ‘star power’, no one gives a shit.

Even though people have completely missed the point (except for example Jimmy Fallon, I fucking love his challenge video), it’s still getting word out that ALS is a thing. A thing that deserves attention and money and time. And thanks to this stupid meme, the ALS Association has seen a DRAMATIC upswing in donations. There’s been SUCH an upswing in donations lately, SO many people hitting the ALS wiki, that it’s goddamned inspiring.

And I just can’t hate that.

“Put a Smile on It!”

“…Put a sock in it!”

I’ve been pretty damned whiny the last couple of days because I’ve developed shingles. Which, if you’ve never heard of it, is FUCKING AWFUL. It sounds all happy! SHINGLES! YAY! There’s probably confetti involved! But it’s basically a really horrible version of chicken pox, which can happen to anyone who’s had it; the virus lives on in your body and randomly it may decide to reactivate. Only instead of the red itchy bumps all over, it’s a really angry, blistery rash and searing pain in half my body, fever, nausea, and muscle aches. It’s like the worst sunburn you’ve ever had and the flu at the same time. I am the queen of high pain tolerance – I’ve had dry socket and never even winced when the dentist packed it with that nasty gasoline and cloves shit – and this has had me whimpering and writhing. I had oxycodone left over from the muscle biopsy; I took one last night just so I could get some fucking sleep.

It really fucking sucks. And I’ve NOT been shy about saying so. Because I am goddamned miserable. And while it happens completely at random, one of the things that MAY trigger it, is stress.

Okay, so ALS causes stress. But the actual disease has been the LEAST of my worries the last couple of weeks. I had to put down my cat, Midori, after living with him for 19 years. HALF OF MY LIFE. It was emotionally devastating. I adopted a new kitten, which is a happy stress, but a stress nonetheless. I gave a talk in public which triggered all KINDS of nervous stress. I attended a party full of strangers. There WAS my first Clinic session, too, and the resulting “…goddamnit” of beign assigned a cane and a breathing exercise, but seriously? ALS is the least of my concerns right now. Real life is happening.

And so today, when I posted a tongue-in-cheek: “I’ve figured it out. I have shingles because I’ve been telling people how lucky I am that ALS doesn’t hurt! hahahahhahaawww sad trombone” I didn’t really think a whole lot about it. I had just been enthusing Tuesday afternoon after the ALS talk I gave that it was AMAZING that nothing hurts and how lucky I am. The timing struck me as funny, was all.

But then I was told that I need to cheer up. If I just keep a good mental attitude, I might be able to beat ALS. Just..buck up! ALS won’t kill me if I just think happy thoughts and don’t let it!

Okay. this is important, so I’m putting it on its own line. In bold.

Positive thinking has never accomplished a documented medical result.

NEVER NEVER NEVER. It is not going to cure depression, it is not going to cure a broken leg, it is not going to fucking cure ALS. And I DO have a positive outlook, and I really DO believe things are good and somehow everything is going to be okay, somehow. ALS is not my life. I am not All Disease, All the Time. That’s just not how I work. But having a sunny disposition is NOT going to cure me. I am dying because my motor neurons are burning out. No amount of laughing is going to keep me breathing. No amount of happy thoughts are going to allow me to continue to put my face in a smile shape when my facial muscles stop working.

A positive attitude dictates HOW I have the disease. It does not dictate IF I have the disease.

A cheerful disposition means I don’t lose friends by bringing up ALS and how I’m going to DIE in every conversation and make myself miserable to be around. It means I continue going to work and don’t wallow in self pity while I cease to be able to afford my mortgage because disability is a fraction of my usual pay. It means I keep going as usual. I continue to live my life, as normal, and don’t become a burden to be around, even to myself. It means not every waking moment is filled with terror and “JFC I AM GOING TO DIE WHAT IS THE POINT OF ANY OF THIS SHIT”. It means when someone invites me to visit them in a years’ time, I say “that sounds lovely!” instead of “I don’t think I can, I’ll probably be in a wheelchair by then.” It means “I’ll try” instead of “I can’t.”

And the occasional whining is to be expected. There are aspects of ALS that fucking SUCK. That whole…”you’re gonna die sooner than you thought” is pretty shitty. No longer being able to dance, sucks. Having to take five minutes to haul your laundry up the stairs sucks. Realizing that you forgot something downstairs and having to think long and hard about whether it’s worth the effort to go back, sucks. A stress-induced searingly painful fevery rash of DOOM sucks ass.

And I am fucking allowed to complain about these things. CENTER CIRCLE, BITCHES.

It does not mean that there’s nothing more to my life. The new kitten does NOT suck (except when she jumps up on the bathroom counter and knocks over a glass that shatters allllll the fuck over my bathroom floor). The fact that I am still able to work does not suck. Birthday cake Oreo cookies do not suck. Friends who are willing to help me get wherever I need to go do not suck. The good far, far, far, FAR outweighs the bad. All the time. And always will.

But knowing this, and having a fantastic attitude towards life, the universe, and everything, is not going to save me from an early death. And that’s OKAY. I’m alright with that. It doesn’t mean there’s no point to having a good mentality, it just means it’s not a cure. You *can’t* cure this disease. All you can do is treat the symptoms. And a good goddamned attitude is an amazing restorative.

In the meantime, you’re essentially telling me to just put a superficial happy face on a horrible and serious fucking situation, and that’s selfish. All you’re really telling me is that I can’t turn to you when I’m in a low spot. You’re making me resent you because you’re negating my frustration. You’re telling me I’m not allowed to be unhappy.

You’re telling me that it’s *my own fault* I’m dying because I’m just not happy enough.

And that is COMPLETE FUCKING BULLSHIT.