Today is my last day of work, before a three week vacation and then MLOA. I sent out an email to my coworkers with a link to this blog, in case they wanted to keep up with how I’m doing. I got a lot of questions asking how they can help, and so I was brave and gave out this link. You can help by listening to my story, by learning about ALS, by becoming part of the Death Positive community, maybe by sliding a few bucks to my crowdrise fundraiser on the left there.
Thing is, yesterday was a Very Not Good Day and it required a verrrrrrrry swear-laden rant, and I didn’t want that to be peoples’ introduction to this blog. So here instead are a few of my favorite positive entries to get you started.
So, if you’re new here, welcome. I hope you find this somewhat educational, maybe entertaining a little bit. There are a lot of useful resources on grief, death, and dying up there, too. I hope you like it here.
((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 aLOTofotherpeoplehavealreadyexpoundedonthatsubject. 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 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.
Two more days. TWO MORE DAYS. And then I’m done with my working career. Three weeks of vacation as a formality. The rest of my life is a blank book, with ALS having already written in all the margins.
A is for Atrophy.
My muscles continue to waste away as ALS kills the neurons transmitting signals to them. My legs are meat stilts, capable of minor movement only; walking on them is a matter of mechanics and getting my knees to lock properly so I can balance ON them rather than WITH them. My hands are curling up into claws of uselessness. My mouth still works, to the detriment of some, and my brain always will. My body is wasting away into the meat shell it will eventually become.
A is for Avoidance.
Most days I don’t really think about it all, except as an abstract idea. Sure, I’m going to die. I have that roadmap. In my day-to-day life, though, the Big-M-Mortality idea makes way for the general practices of getting through life. ALS intrudes in all things, of course; drinking a soda is now a two-hand operation and I can never even pretend that my life is normal again. All of that, though, is background radiation anymore. It’s amazing what can become normal, given time.
A is for Abbreviated.
My life has a shortened length. For some ALS folks, this throws them into a fervor of living as much life as possible in the time they had left. I didn’t go that route. I’m far too pragmatic to have abandoned my job and traveled the world while I still could. I focused my efforts on making my future life more comfortable, and that meant working as long as I could. If we had universal healthcare I wouldn’t have had to worry about it so much.
A is for Adjustments.
The disease progresses, and whatever I could do a month ago, I can’t necessarily do today. Life is a constant series of micro-adjustments and new behaviors, new rules and limitations. I learn of these new limitations, often the hard way, and another compromise with life is created. The new normal evolves.
A is for Afraid.
Just cause I’ve accepted death, doesn’t mean I’m ready. I’m terrified of what this disease will continue to do to me, and what it’s going to cost my loved ones. What it’s already cost them. I hate that I’m so reliant on everyone around me, and it’s going to get so much worse.
A is for Advance Directive.
Seriously, you have to have one. Fill it out today. If I have one positive impact on your life, let it be that I inspired/coerced you to do this one thing. It’s a hard thing to think about, I know, but your family needs to know what you want. They can’t know unless you tell them.
A is for Assisted Suicide.
I don’t know for sure that I’m going to go out this way. But I’m grateful every fucking day that I have this option.
A is for Anger.
I don’t think I’ve ever questioned “why me” so much as outright stated, “It is pretty fucked up that this is happening to me.” No one deserves ALS. (There are a few people I would like to have it temporarily though. It’s a short, sharp lesson in humility and reliance on others.) I’m angry that this disease exists at all. That we know next to nothing about it. It’s brutal and unfair.
A is for Allies.
It’s absolutely true that you don’t know who your friends really are until disaster strikes. I’m grateful in a perverse way for this disease, for showing me what grace actually looks like. I knew my friends were awesome before. I didn’t quite understand the enormity of that power they have. I do now; I am witness to it every day.
A is for Alive.
For now. I continue to breathe, and so I will continue to write and think and feel and rant and swear. And as long as I am alive, I can bear witness to the ravages and the comedy and the love and the struggle and the disaster my life has become. Al of it, often at once. And so long as I have the best medical care team on my side (I do!), the support and love of friends (check!), and a sense of humor about it all (absofuckinglutely), I’ll be okay. Even when I’m really not okay. And when I die, you will know that it was all okay, too. Somehow. Someday. You’re going to be okay.
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?”
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.
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.