I received a happy box in the mail yesterday! Something very cool was inside of it and I wanted to tell you about it.
Occasionally, I get random happy packages from certain friends. My friend Jim particularly, he sends me random boxes of completely bizarre things that he finds and thinks of me. Anything from Pez dispensers that have no head, to creepy little trinkets he finds in thrift stores, to snippets he cut out of a magazine. Lots of chicken related things. I adore getting random packages in the mail. I think everyone does, really. Something like 10 years ago, I did a happy box exchange in which I invited my friends to participate, and I sent out a box full of things that made me happy to each of them. I burned CDs of music that I like, made little packets of cake sprinkles and stickers, made happy little finger puppets from IKEA into refrigerator magnets. I included a note on everything to explain what it was and why it made me happy. Why it was important to me to include in that particular box. The idea was for it to be in exchange, and once they had received my package, they would send me a box of what made them happy back. Not everyone sent me a box back, but many did (with a couple notable people going way, way overboard above and beyond), and I adored every single one of them. Satou-chan was one of those who reciprocated (in spades).
I’ve known her for many, many years. She’s one of the very first people I ever met online and forged a real-life friendship with. We bonded over a common love of Japanese culture, writing, and a particular manga called Fushigi Yuugi. I flew all the way from Oregon to Atlanta, Georgia to attend my very first anime con with her and Holly, our other anime obsessed writer friend. It remains one of my happiest memories. I’m grateful every day that we kept in touch. She wound up moving to Arizona, and I was lucky enough to be sent there for work sometimes, and on one happy occasion we were able to sync our schedules and meet up in person again. That, also, is one of my happiest memories.
Satou-chan just sent me happy box.
She had texted me to let me know it was coming, and to confirm my address, and to apologize for the length of time it’d been since we last spoken. I truly wasn’t worried about that last thing, because communication works both ways and I’m just as guilty about not keeping in touch. I honestly don’t get offended when people go long periods of time without contacting me, because I am absolutely awful at it myself. My most cherished friendships are the ones in which I usually don’t speak to them for months, sometimes even years at a time, and when we do pick up it’s right back where we left off like no time at passed at all. My friendship with her is one of them.
Inside the box were many truly happy things. Including one of the most amazing cards I have ever seen in my entire life – it was a paper craft tray of sushi. Inside, she’d written all sorts of almost embarrassingly praising words, letting me know how much she cherished me and my friendship. The sushi card was because one of her favorite memories was of our Ariona hangouts and going to sushi together. I won’t lie; I totally cried. She also sent me stickers, because duh, and some happy fairy sparkly things, a glorious pair of socks, and probably the sweetest children’s book I have seen in forever. She said it was her favorite, and it reminded her of our friendship. (Yeah, I cried reading that, too.) Everything in the box was wrapped in tissue paper, separate little packages for me to unwrap and reveal surprises within. Every little packet had a note on it, explaining why she was giving me that particular thing, or what was on her mind when she bought it, or simply “This box contains tiny dinosaurs. I am sending them with love. <3 “
I loved every single gift, every single note, every single thought.
But the one that stood out the most, and the one that is probably my favorite thing in this whole entire box, was the note attached to a little bundle of things like lip balm, a keychain, and a little (freaking ADORABLE) notepad: “So… I realized early on that a lot of the stuff I bought for your happy box might be hard for you to use. (One reason I didn’t send.) Then I realized I had no business deciding that for you, and decided to send them anyway.”
And THAT, my friends, is how you be a fucking ALLY.
J likes rabbits. A very specific rabbit aesthetic, mind you. Get those Hallmark Easter bunnies out of here. Victorian rabbit dolls, like The Velveteen Rabbit, Albrecht Dürer’s Hare wood cut. When I see these kinds of rabbits, I think of him. If it’s something online, I share it with him through Facebook or text message. When I see these kinds of rabbits, I think of him and smile.
My brother Gecko likes birds. When I see something funny related to birds, I think of him. I forward bird jokes, and bird memes. When I see something funny about birds, I think of Gecko. Birds make me happy, because they make him happy.
Danielle liked manatees. I mean – I imagine she still does. She likes them because they were chubby and round and adorable. When I see something about manatees, I think about Danielle. I can’t share those things with her though; she’s no longer in my life. When I see things I know she would enjoy, I am reminded of her absence, and it hurts a little even though I like that thing. I enjoy manatees a little more than I might have otherwise, because they made her happy and I loved seeing her happy. But now they also make me a little sad because they remind me of her, and she’s no longer around and seeing manatees makes me miss her.
Sometimes I wonder what associations people have with me, and what sort of currently happy things will become bittersweet once I’m dead. Marshmallow Peeps, I’m pretty sure. Stickers and things with googly eyes maybe. Mister Rogers. Probably all of the things that people currently forward to me on Facebook and email, silly little jokes and references that make them think of me and smile; and knowing I would enjoy them also, send them along.
Sometimes I think about the time that will come, when there will be that thing that reminds someone of me, and I won’t be here to forward that thing to. Some cool fact, or happy little thing that someone will want to share with me, but they can’t. Because I will be dead. When some currently goofy thing becomes bittersweet.
What happy things I am going to taint with my absence?
It’s a pretty fucked up legacy, ruining something quintessentially silly. To be able to fuck up stickers for somebody. Stickers, for fuck’s sake. Happy little adhesive pictures. Someday, someone is going to be at a craft store minding their own business, and their eyes will wander to a happy display of delightful little sticky images, and they’re going to get really sad. Because they know how much I love them. Loved. It’s a completely ridiculous thought. An adhesive cartoon octopus is going to have the power to make someone cry.
We don’t truly possess the power to control how we are remembered. We can only try to steer the shape that our selves create in someone’s memory. A vague outline, to be filled in with the colors of experiences and emotions and perceptions beyond our control. I hope to be remembered first and foremost as kind. Death positive. My almost unhealthy obsession for cats, Mr. Rogers, stickers, googly eyes, nature documentaries, Halloween, spiders, cartoons, marshmallow Peeps, swearing, Bob Ross, Skyrim, Pokemon Go, etc etc etc etc notwithstanding, I really hope kindness and death positivity are the first things people think of when they think of me. I’m okay with those two things being a little bittersweet. I’m comfortable with someone coming across an article about green burials and thinking how much I would’ve approved and appreciated it and getting a little bit sad that they can’t hit that forward button.
Those other things, though, are all really happy things and I hope my death doesn’t ruin them too much. At least, not for very long. Marshmallow peeps have no business being maudlin. Sometimes I almost regret liking shit that is so silly, so fervently, because the thought of an adorable cartoon bat making someone tear up a little is really fucking depressing. It instead would make me very happy to think that someday one of my friends is going to slap a sticker on their laptop and think fondly of me without sadness coming in and fucking it up. Because stickers are awesome.
Obligatory 2018 retrospective post coming right up!
This last year seemed particularly unkind. I honestly can’t recall another year in my life in which I was so tightly wound, all the time. My stupid disease actually seemed like the least of my worries. I distinctly recall thinking on many occasions, “please can this bullshit be over so that I can just focus on actually dying?” Our current political climate was a massive source of stress, every day, all the time. I had set up filters for my Facebook and other social media to automatically purge all mention of that asshole currently terrorizing us via the White House just to maintain some shred of sanity. Even still, it intruded too much of my reality, too often. I lost entirely too much sleep just panicking on behalf of those I love, and myself, and total strangers. Too many nights spent in abject fear as I watched my country descend into absolute fascism. In our last session together, my therapist actually told me that his wish for me in the coming year is to stop giving a shit. I can do literally nothing about any of this, and I would be so much happier if I could just let it go.
But then, he conceded, if I did somehow managed to pull it off he wouldn’t even know who the hell I was.
January I got my new wheels. She is named the SS Opportunity, because even before I get in that chair it weighs almost 400 pounds, and so if you do not get out of my way when I am in it you will have an opportunity to experience being in a wheelchair for yourself. I didn’t start using the chair right away, primarily because I had no real way to transport myself and the chair to places I needed to be. I needed a wheelchair van first. I also got a new boss at work, my sixth in 10 months. He came with a bold set of new ideas and new plans and promptly set about firing all of my techs and replacing them with new guys. It’s a given at that company that every time there is a new leader, they have to put their fingerprint on everything. It was a lot of shakeup and stress I really didn’t need.
February was particularly ugly. There was a very abrupt end to a very young life that fucked with me more than I can tell you. It’s not my business to tell you. I questioned a lot of things. My mom had a heart attack. Fuck February. The end.
March. I had my first clinic day of the year, my hands were officially decreed garbage as they registered nothing at all on the grip test. My estranged father, whom I had not spoken to or heard anything about in 20 years, died. I paid for his cremation. That’s all I have to say about that. Stephen Hawking died, and so ALS lost its one celebrity.
April was my fourth Sadiversary. I also had my 43rd birthday. We road tripped to Arizona to buy a wheelchair van, because they averaged five to $10,000 cheaper there. The road trip was entertaining, we learned a lot about how ADA regulations are apparently just a suggestion in Arizona, and no one who writes the rules actually has any fucking idea what it’s like to be in a wheelchair. Spoiler alert: a grip bar behind the toilet is absolutely useless and in it self does not make for an accessible bathroom. The van was at the mechanics within the month for a door closing issue. However, thanks to having the van I was able to start taking the SS Opportunity to work. She makes everything not only easier, but sometimes possible at all. I had gotten used to doing without a drink at work, or waiting until I was nearly peeing my pants to use the bathroom and planning what else I could do while I was up, because of the effort required to do those things with the walker. With the chair, I could just… Get up and go whenever I wanted. Wherever I wanted. It’s kind of nice to be able to put in a full day’s work and still have a little bit left of energy at the end of the day. I had forgotten what that was like.
May was blissfully uneventful.
In June, I put in notice at work. I lost a lot of sleep over that decision, and popped more Ativan than I’m probably comfortable admitting. My manager was kind of the opposite of devastated, which cemented in my brain it was absolutely the right decision to make. I gave him almost 3 months notice, and set to work making sure I did everything I could to keep the wheels at my job turning after I left. I was asked many many times why I bothered, and towards the end I started asking myself the same question. I freely admit though, to enjoying heaping spoonfuls of schadenfreude (I am fucking amazed that this program knows schadenfreude) when the CEO of that company was ousted for unethical behavior. I watched an amazing, very positive and life-affirming concert, and a burlesque show. June was pretty all right.
July saw me making official announcements to coworkers about leaving, and many many things happening at work that cemented it was a great idea to be leaving now. Which is not to say that I didn’t obsess and stress and freak out about it anyway. So much of your identity is tied into what you do for living, and I had – am having – a really hard time letting that go. The world at large collectively lost its shit over plastic straws. It had been quite a long time since I had seen so much ableist garbage on my newsfeed, so I guess we were overdue. I spent a good chunk of time educating idiots on exactly why plastic straws are a literal lifesaving device. I also got the bill for my wheelchair this month, and was eternally grateful yet again for the health insurance my job provides. I could have bought a very, very nice car for what this thing cost. I got angry again that the insurance company does not consider the lift feature to be necessary when they refused to pay for it. Still, I’m very glad I opted in for that anyway. I use it probably every time I sit in that chair, and it makes everything so much easier. It’s rather nice to be able to look people in the face when you’re talking to them; you really do become invisible when you sit in a chair. If you’re not eye-level, people forget about you.
August was when I stopped actually reporting to work. August 31 was my last official day, with three weeks of vacation to follow. So much angst. August was also when Jillian happened at me with her rotten cabbage juice bullshit. It takes a lot for me to get that angry. It was nothing however, compared to the anger of all y’all. That was a delicious thing to behold. I am grateful for you every day. I will never, ever doubt that you all have got my back.
September was the end of my working career for reels. It still doesn’t seem like a thing that genuinely happened. I had my last clinic day of the year, and my breathing was officially rated problematic. So that was fun. I had a team walk with me in the ALS Association’s walk to defeat ALS, and that was a very uplifting experience. As usual. And again, if I ever had any doubt that I have a tribe that supports me, that doubt is gone. I am loved and supported, and I will never forget that.
In October, I gave a death positive talk at an art show. It is probably one of my favorite things I’ve ever done. I’m genuinely proud of what I wrote for that show, and hopefully I convinced some people to fill out their advanced directive. Death positivity continues to become a mission in what’s left of my life. Halloween is my favorite season of the year, and we did a whole lot of celebrating and shopping and buying delightfully useless decor and stuffed animals. October is also Jay’s birthday, and I simply don’t have words to convey how important that man is in my life, and how grateful I am that he remains my best friend and my strongest ally and my chief supporter. I literally do not know what I would do without him.
November. Elections. Just… So much. I don’t think I really slept at all in November. It was the start of a pretty serious slide into depression that I am still fully immersed in. Hence my silence. Having nothing to do is waiting very heavily on me, but I also don’t really have the energy to do anything specifically. I’m not ready yet to look for volunteer work or anything. I bought a new laptop. That was pretty cool.
December has been spent desperately attempting to make something of what my brain has fixated on as my last proper Christmas. Also be around for the next one, but my hands won’t be able to open presents, or wrap gifts, or bake a fruit cake. Leaving my bed much less my apartment has become an ordeal. I fully realize a lot of that is the depression talking. But most days, things seemed pretty dark. Because they are. I have a terminal disease, and sometimes I just can’t find that sense of humor about it. Most days I can. Some days, it’s even actively hilarious.
Today marks the new year. Even if I die in the next five minutes, there is one number higher on how long I’ve lived. I have no fucking idea what the coming year brings. All I know for sure is there are a couple of concerts I have tickets to. In September, my short-term disability runs out. I really, really, really hope I have a permanent place to live by then. At some point during the new year there will be a post all about that I’m sure. Meantime, I have some eggnog and some snacks and a warm bed and very cute cats and no plans to do anything tomorrow but sleep and play video games. Can’t complain. I will take 2019 as it comes, and simply pray that it is kinder to me than last year was. I hope that for all of us.
If I’d been told five years ago what ALS was, and been allowed to do as much research as I like, and then been asked to write down everything I thought might be a problem for someone with the disease, I’d still have gotten most of it wrong.
That’s part of why I made this blog, I guess. To track those things. Even things I probably would have mentioned, I would not have gotten completely right. I am very, very lucky that I am not the first person with this disease, and so every little one of these little problems that have come up almost always has a solution. And usually? Even a marketed product to fix it. A law to address it. Something.
For example! I have no strength in my feet. That’s a duh observation. But one of the unexpected consequences of that fact is that at night, the weight of the blankets simply resting on top of them becomes painful. The weight of the blankets push my feet down so my toes curl and my heels dig into the mattress. When you have strength in your toes you don’t even register the weight. When your feet are useless, you can actually get bedsores on your ankles and heels just from that little bit of weight. So now you know!
Luckily, folks have had this problem addressed before. One answer is a kind of cushiony boot that you wear to bed, to give your ankles extra cushion. But the BETTER solution is something called a bed cradle – a C shaped frame that slips under your mattress and keeps the covers up off your feet. It’s also awesome for cats to lean against, apparently.
(there will be a cute pic of my cats leaning against the bed cradle here as soon as my site stops being a shit head and lets me upload)
I love this thing.
One thing that ABSOLUTELY occurred to me as a need, however, was the need for a bathroom with bars and enough space to get a wheelchair in. It’s a no-brainer. And yet. AND YET. So many places get it wrong. I …hold on, before I get into this rant, I’ma look up what the legal requirements are. If i were a benevolent dictator, everyone who owns a public place would have to do a day in a wheelchair to get a feel for it and see what the hell people have to deal with, so they could visualize how best to build a proper fucking bathroom. And I know there are absolutely the kind of assholes who comply with the absolute letter of the ADA law but to the point of practical uselessness. I suspect that is the case for the Lake Oswego Stanford’s restaurant, which I’m about to rant about in a second. I am calling them out specifically here because we went there for Thanksgiving, and my experience with their toilet was so goddamned frustrating it verrrrrrrrrrrrry nearly ruined my day because I almost had to call J to come rescue me.
…hoooboy yah that stall was NOT compliant. OK so here is the photo I took of myself sitting on the toilet, in preparation for sending it to J by way of explanation why I needed him to come get me.
(there will be a pic of the bathroom stall here as soon as my site stops being a shit head and lets me upload)
My wheelchair is backed all the fuck back against the door. The foot rests on my wheelchair had to be folded up to get my chair in all the way so I could close the door. My knees are apart because there is literally three inches between the edge of my chair and the toilet bowl. On the one side of the stall is a very flimsy wooden partition and no grab bar. On the other wall? A grab bar AND THE FUCKING DIAPER CHANGE STATION MOUNTED ONE INCH ABOVE IT. The bar was rendered completely fucking useless because of that goddamned thing. There was another bar along the back wall, mounted one inch above the toilet tank.
RESTAURANTS AND OTHERS, Y U DO DIS
I should have not bothered, but I really had to go, so I managed to maneuver the chair in at an angle. I was able to get out of the chair thanks to its seat tilt function, but A GRAB BAR ON THAT WALL WOULD HAVE BEEN FUCKING NICE. Using the bar against the back wall I was able to pull myself forward to lean against the back wall to undress. Then carefully lower myself down, because I couldn’t even lean on that non-bar wall for support (see: flimsy-ass wooden partition). The toilet was lower than my chair, and the instant I sat down I knew I was not going to be able to get back up with any sort of ease.
I finished up and took a long time to figure out how the fuck I was going to get back up. Long enough that J was sending me a text to ask if I was okay, but I was already planning on what I was going to say to him to explain I was going to need his help to get out. Meanwhile the bathroom was suddenly full of women, there was a line for the two stalls, including one woman saying she couldn’t use the other stall because she needed the bars. I almost called out to her that the handicap stall wasn’t going to be of any use to her.
After some consideration, I wound up having to lift my leg to it sidesaddle on the toilet, swivel my bare ass on to my wheelchair from the toilet, then lift myself up from there to pull my underwear back up and my skirt down. When I sat back down, I was out of breath. Humiliated. And then had to open the stall door and do a six point turn in a crowded goddamned bathroom to get to the sink while being stared at by a line of ladies. The woman who needed the stall had to wait for me to wait for both sinks to be clear, because the handicap stall door opened almost against the sink and I had to be completely out of its way to let the door close. Which meant once she was in there and the door closed, I effectively trapped her in there with my chair while I went back up to the sink to wash my hands. I’d wanted to take a picture of the stall with the fucking diaper station obstructing the bar, but there was a very long line waiting for that toilet.
I’m simply saying that Stanford’s was really lucky their pumpkin cheesecake was delicious because I might have burned the fucking place down after that.
As it is, now that I’ve seen the legal requirements and know goddamned well they are not in compliance, I’m proooooooooolly gonna lodge a formal goddamned complaint. We like to go there for family gatherings, but I’d never had to use the bathroom before. I’ve sometimes thought about starting a sideblog for really terrible public toilets and why they are not useful for actual ADA people, but I think it would just be supremely rage inducing for me and no one would give a shit who had any power to change it.
So instead I rant here in slightly TMI tones for y’all folks to read about. You’re welcome.
I got a voice mail the day after that last post from my awesome nurse. “Hi, I read your blog, and I have some ideas about the AVAPS.”
Uhhhhh..hi there. I forget that people read this, sometimes. I have the best freaking care team ever, you guys. I got contacted from three different folks to ABSOLUTELY ASSURE ME that the machine would get paid for, the rules are more bendy for folks with ALS so please don’t stress about it. And then thanks to Nurse Awesome, I was contacted yesterday by Providence Respiratory to adjust my settings remotely to ramp that sucker down.
OMG SO MUCH BETTER GUYS.
It had previously been forcing air down my throat so hard my ears were popping. Seriously. I can handle it now. I might even get compliance on my own without my awesome peeps having to argue for leeway. It’s still not exactly comfortable, but it’s so much more manageable.
Thursday was noooooooot a good day, there were a million things going wrong, including hurting myself by trying to lean over in the chair to pull something out from under my wheels. I felt and heard something go POP, and owowowowowow. Not a crack, though, and breathing was still ok, so I just rode it out and after a few days’ soreness I’m alright. Then Thursday night someone said something a bit unkind and I kinda completely lost my shit for awhile. Occasionally there’s a trigger and I mourn the person I don’t get to become. Five years ago, I had my very own house, I had just lost a lot of weight and was fitting in all my cute clothes again, I was going to school to further my career, I had all my shit sorted out and my life was pretty fucking great, actually. Thursday night I let myself grieve for her, because that future is dead, and I let myself be angry at people who say really stupid shit.
Friday I had the distinct displeasure of taking the sodding van in for repair. It cost me $919. I’m extremely grateful to Intel for their short term disability benefit easing me out of the workforce, because fortunately I HAVE that money. For now. Although now the brake light’s coming on. So that’ll be fun.
Saturday I did nothing but sleep and fuck around on the internet.
Sunday I did something SUPER COOL but is not my story to tell, so just believe me when I say it was amazing.
This morning my cat woke me up because I could hear him chewing on plastic. When I located him, he had a huge long piece of cellophane coming out of his mouth, and was choking on it a little. I could not get him to come to me for ANYTHING, and when I stood up and tried to get to him, of course he backed away. I took another step towards him and fell right on my ass. It didn’t hurt, even though I’ve kinda got no muscle in my ass to cushion the fall anymore, but it knocked a bit of breath away.
And then since I was on the floor, my fucking cat decided to come check me out and I was able to get the plastic out of his mouth.
The fall didn’t hurt, but getting off the floor did. I wound up sitting on my foot rests and using that wheelchair lift feature to get myself up off the ground, but even with the grab bar on my bed, the chair to push off of, and my walker on standby, I wasn’t able to get over up on the bed. I had to lower myself back to the floor and let myself catch my breath before I tried again, and was very, very grateful to the Depends company for their fine product and my forethought to start wearing them to bed otherwise I’d have exacerbated my situation by having to catch my breath sitting in a puddle.
Welcome to the TMI Show.
Now, I have my awesome watch, so I was never stranded. I always had options. I’m just stubborn as fuck. I texted J but he was not immediately responding, so I tried the wheelchair lift again, and used it to ALSO steer myself right up against the bed this time, and was able to get in bed. And then after catching my breath, getting up to go to the bathroom to change my disposable shorts. I cried for like half a second, but realistically I know this is definitely going to happen again. Probably not the cat part, but there will definitely be another fall, and next time I very probably will not be able to get myself up. It’s twelve hours later and even though I’ve been in bed all day I’m still exhausted from the ordeal. So that sucks. If I hadn’t had such a huge meltdown Thursday, it would have happened today.
So that’s my life, this last week. Kinda a shit show, but there were definitely some good bits in there.
Also I wanna restate that my care team is amazing, especially my nurse. <3
Jeez, peeps, it’s been a month since I’ve posted. Good thing this blog isn’t monetized or anything. A kind commenter left me a little prod about being so quiet, and I realized I should get off my ass and say something. Or…get ON my ass, since writing involves that position. It’s been awhile that I’ve been in a place to be able to pace and dictate or whatever.
The first couple weeks of October, I don’t even have an excuse for not posting anything except perhaps laziness. Well, obviously laziness. No ‘perhaps’ about it. The last two weeks were kind of rough if I’m being honest. Politics caused me a lot of sleepless nights, and I wish I had it in me not to care about any of it, but I don’t. I often say the one silver lining to this disease is that I get to check out early, whereas the rest of you people have to stay and deal with this. I won’t be alive to see California slide into the ocean, or Handmaid’s Tale cease being fiction, or Auschwitz’s rebirth in my own goddamned country. There is a small grace in that. It still doesn’t prevent me having sleepless nights just absolutely freaking out over everything I cannot change and crying a lot. I wish the only thing I had to worry about was my actual disease.
The main thing going on in the last couple of weeks has been transportation problems, and breathing problems. I had an appointment to get my new AVAPS sleep machine, which I was very nervous about because it’s a whole new goddamned concession to this bitch of a disease, and I’d asked J to go along with me. Unfortunately, when we got there I was not able to get out of the fucking van because the automated door mechanism decided not to work. At all. We were used to it being a flaky bitch and sometimes not latching closed properly, but this was new. The door would not open all the way even with J pulling it open manually, so the ramp could not extend. And so I sat in the parking lot missing my fucking appointment while Jay feverishly tried to figure out how to free me. The door mechanism has been kind of flaky pretty much since I got it, and she’s been in for repairs twice already. J managed to get the door to open all the way, but he missed work the whole day instead of just a couple of hours while we took her in for an emergency appointment. The mechanics there were able to temporarily Band-Aid the problem.
By pretty much breaking my door.
Their fix to my door not automatically opening was to simply cut the cable that opened it and turn it into a manual door. Which is not, of course, a fucking fix. It was a preventative measure to keep the cable from snapping of its own accord and shearing apart the motor. We got a proper appointment later that afternoon to see what could actually be done, and after having my van for over an hour they explained that the entire mechanism would need to be replaced. Oh and now also the cable. Which, after the last time the van was in for service, we already knew replacing the assembly was going to be the next step which is why I had previously asked them to replace the entire assembly in the first place, and they never called me back. A month ago. So yes please can we actually REPAIR THE FUCKING VEHICLE.
This was all after getting pissed off that the mechanic would only talk to J and ignore me – because I’m just stupid dumb woman who doesn’t know anything about vans LOL. J very politely asserted that it was only MY name on the paperwork and registration and I would be the one paying for the repairs, so really he should be addressing me, not him (J is a champ). Thankfully, the mechanic did speak directly to me after that. But seriously. Dude wasn’t even old, he really ought to know better. They always do that; they will look at the paperwork read my name, and then turned to Jason and address him as Mr. Ross (THAT IS NOT HIS NAME EVEN) and explain what needs doing.
BITCH I AM SITTING RIGHT HERE AND WILL BE PAYING FOR THIS HI HELLO HOW ARE YOU. FUCKER.
Moral of the story is that we agreed the door assembly and cable need replacing. I kind of had to insist that we do that – the mechanic was seemingly trying to talk me out of it like, the door is working? (HI NO IT IS NOT BECAUSE IT IS A MECHANICAL DOOR THAT IS NOT FUNCTIONAL AT THIS TIME) The repairs will be expensive? (I HAVE A FUCKING WARRANTY) We got our van back, with the door still needing to be manually opened and closed before the rant will work, and the mechanic sets to ordering the parts that were needed and getting warranty authorization for repairs.
…A week later he calls to inform me that the warranty is declined for the repairs, because my contract does not cover those parts. He thought it sounded fishy and asked to see my actual contract. I have agreed the hell it doesn’t cover the freaking door, I paid $2000 for that fucking warranty it had better, and agreed to send him a copy. Turns out my fucking contract does not cover anything but the ramp itself, and the drive train. Literally nothing else. I paid $2k for them to not fix anything but a catastrophic failure THANK YOU ARIZONA MOBILITY FOR YOUR USELESS GODDAMNED SERVICE CONTRACT. So I am on the hook for $1000 repair. I have an appointment to go ahead with the repair on Friday, and then yesterday the ramp itself decided it doesn’t want to work either and refused to work for a moment. And then did work. Much like the door itself would sometimes decide to close and sometimes not. So I probably get to look forward to getting that repaired soon as well. Theoretically at least that will be covered. IN THEORY.
After missing the breathing appointment, I came to find out that the respiratory folks would actually have been able to come to my apartment in the first place to set up the machine. THIS IS USEFUL INFORMATION I WOULD HAVE LIKED TO HAVE. YOU KNOW, BEFORE. So we set up an appointment for them to come to me, and last Tuesday they delivered my new machine. It is, as promised, the most powerful noninvasive ventilator you can get. It costs $6400. If I can prove compliance – by which I have to use this machine at least four hours a day for 21 days out of 30 – then my insurance will pay for it outright. Otherwise I’m going to have to rent this thing for $700 a fucking months Covered by insurance, sure, but my co-pay is about to reset in January and I will be goddamned if I am paying for this fucking machine on top of everything else. I’ll save my precious out of pocket money for the $17,000 a month infusion meds that aren’t helping. I guess. So I just need to prove to Providence I am going to use it when I sleep. Pinky promise.
That’s turning out to be much easier said than done.
This machine is indeed much more powerful than my old CPAP was. Too powerful. It’s kind of like breathing from a turbine engine. It has a ramp function, where it will slowly turn the air up, but even that is not exactly comfortable. By which I mean it is genuinely hard to breathe with that machine on. I can’t take a little bit of air, it’s like drinking from a fire hose. If I try to breathe shallow to prevent the machine inflating my lungs like balloons, it freaks out and tries even harder. Eventually I have to pull in a huge lungful of air, which the machine helpfully cuts off the airflow after a second and I have to breathe through my mouth to catch my breath entirely. I have fallen into a routine of putting the mask over my face and then just checking out the Internet or watching TV or something for an hour or so before bed to try to get used to it before I am actually attempting to sleep. Like, distract myself and trick my body into being cool with my new overlord breathing on my behalf. It’s not really working. The only way I’ve really been able to sleep with it is if I medicate myself either with Ativan or Ambien first. Even then, I wake up fairly often. I find myself constantly checking the machine to see if I’ve hit four hours of use yet so I can pull the mask off and sleep comfortably.
This machine has taught me what my actual limit for life is.
As I lie in bed struggling to breathe, I know that when this becomes my existence, and not just an artificial effect produced by a machine, I am going to be done. I cannot live that way. It is abjectly miserable, and it is impossible to do anything else when you are struggling so hard just to get air into your body. That is not going to be a life worth living. When the machine is doing my breathing for me, and there is nothing in my brain except an animalistic fight for control over the oxygen coming in and out of my lungs, that will be the time to say goodbye. Because that is not a life.
For now though, I have the ability to pull the mask off. I counts down the time until four hours has passed, when I can pull the mask off and sleep properly. For now life is still great. I have ideas and plans. Including a very important plan to call the respiratory specialists and see if there is some adjustment that can be made to make me a little less abjectly miserable when I’m trying to sleep. To make sleep possible at all without taking potentially addictive medications. Friday I will take the van in and try to get it limping along for a little while. I literally just needed to last a couple of years. Sunday, I get to do something really really awesome I am super excited about. I have things to do. People to see. Life to live.
While in the company of a good friend, we talked about serious and silly things as I usually do, and found myself devolving into a rant against billionaires. Hoarding that much money should be illegal. No one should ever have a billion dollars in today’s economy, it’s unconscionable. How the hell do you have enough money to literally end world hunger and then just…not?
After awhile, my friend sighed angrily. “It just…makes me sick,” she fumed.
“It’s pretty bad when you’re talking to a terminally ill person and my disease isn’t the most depressing thing,” I agreed.
And then we both laughed and felt better, and THAT is why gallows humor rocks.
My friend and insanely talented artist and compassionate person Tamara owns a cute shop/art gallery called Redux here in Portland. She occasionally has art shows at Redux, and occasionally those gallery shows are to benefit a good cause, like for the Cat Adoption Team. She asked if I would be interested in in a show she was planning about Death Positivity. I said OH HELL YES PLEASE. She asked if I would mind it being a benefit for the ALS Association. I was all kinds of verklempt and said I thought that would be amazing. She asked if I would like to read something at the show. I said I would be honored, and I would try. This is what I wrote, and what I read tonight.
There’s a lot they don’t tell you about dying. I mean, it’s not as if terminal diagnoses come with any kind of handbook to begin with, but there are a few things one usually expects, typically to do with your specific disease. Spoiler alert: with ALS you stop being able to walk really well, or at all. You may also expect to lose the ability to speak and swallow. They tell you what kind of trajectory your disease is probably going to take, and they can usually give you some form of a timeline.
No one tells you though, how profoundly, emotionally tiring it is. I had to learn that on my own. There is a physical exhaustion that typically comes with whatever ails you, of course; hell, it’s usually one of the symptoms that told you something was wrong to begin with. But no one can properly prepare you for how soul crushingly exhausting the whole business of dying is. How the psychological process of navigating your own death saps what little energy you have to fight the physical troubles before you. How…lonely, this whole business is.
Here’s something else I had to learn for myself: it absolutely doesn’t have to be.
This is a hell of our own devising.
It’s a hell born of ignorance, paranoia, and good intention. It’s a hell that comes in slices, tiny slices of death denial force fed to us from a young age. When adults use phrases like “gone to sleep” or “gone to Heaven” to explain why Grandma isn’t going to be coming over for Christmas this year. When our beloved old pet goes to some imaginary farm to live out their twilight years. When we get older, and we learn what death is, hell is fed to us in new rules: you’re not allowed to say DEAD. Ever. They have gone to the Lord, or passed away. It’s not a dead body laid out in a coffin, their earthly remains lie…in repose. In an obscenely expensive burial chamber. Undertakers become funeral directors, graves become memorial sites, corpses become our dearly departed. A whole lexicon of mortality is denied to us, with harsh social consequence if we ever dare say BURIED instead of “laid to rest”. We cheerfully eat this poison, we send ourselves into fits of delusional paranoia as though merely mentioning someone is dead is some sort of invitation for disaster, to brush death under the carpet and never talk about it in polite company. As a society we have decided that this is healthy behavior.
But it isn’t.
Because let me tell you, this culture of death denial makes it REALLY, REALLY HARD to *be* dying. It is impossible to deal with the practicalities of the matter when no one will say it out loud. Any time you mention the D Word, you get uncomfortable silence and furtive glances and abrupt subject changes, or you get laughter and even more obvious subject changes. People are so worried about offending my delicate feelings that I am not allowed to express those feelings at all. Some have swallowed the belief that if you don’t talk about it, it magically can’t happen, or the other inane idea that thinking positive will fix everything! OH SHUSH DON’T TALK LIKE THAT THEY ARE GOING TO CURE THIS YOU WILL SEE – THE ICE BUCKETS WERE MAGIC. THOUGHTS AND PRAYERS ARE PANACEA. SHUT UP WITH YOUR DEPRESSING DEATH TALK. It is profoundly frustrating. It makes it difficult to plan what’s to become of my cats, or ask what earthly possessions would someone like to have, if they just hand wave and assure you that you have plenty of time to think about it. Later. Much later. Or never. That works too. Let’s deny that any of this is happening and just spend time together ok? Without talking about ..you know. It’s just so…morbid.
Instead, you’re expected to shut up about it, and bottle it up, and in the end you’ve spent your last days spiritually exhausted from having to pretend you’re not dying all while secretly dealing with all the emotional, physical, and bureaucratic nightmare of actually dying. And then of course it’s too late for those conversations, you’re capital D-Dead and all of your favorite things go to some charity or yard sale instead of the people who might cherish them for their history and their sentiment. Your stuff in the garbage, instead of a friend’s home, your social media accounts deleted instead of put in memorium, memories gone forever and your favorite dishes gone to your greedy aunt who will be selling them off for profit instead of your collector friend who’d actually appreciate and use them for what they are, and love them for whose they were. The letters you carefully wrote as goodbyes tossed into the recycling instead of delivered because you couldn’t tell anyone where they were. Who you are, your legacy, written over without your control or input simply because no one could look you in the eye and say “You are dying and that sucks, and since neither of us can do jack about that, I would really enjoy your cook books when you are gone.”
Death positivity is the cure for that hell. We’re going to die. That is okay. It is normal, and proper, and natural. Death positivity means understanding that, and even though it ABSOLUTELY SUCKS, not letting that get in the way of your daily business. Hell, it can do nothing but improve your daily business. Ever have a brush with death? Then you know this already in your bones. Mornings seem so much brighter when you almost didn’t have another one. Flowers smell so much sweeter when you know someday you will have smelled your last. Time becomes so much more precious when you understand there is a finite quantity. Marketers understand this and bank on it, or else “limited edition” would mean nothing.
Death positivity means understanding that YOU are limited edition.
“Repose” has another meaning. A lack of activity, a calm and composed manner. At rest, but alive. At peace with what’s to come, without need for euphemisms and coverup language. Call Death what it is, and fear it less. Talk about it openly, and remove some of its bite. Let me tell you what I need in order to die at peace without dancing around the reasons why. Ask me the questions you need answered, without fear of awkward silences or recrimination. Death is weird, be curious about it. Enjoy the time we have, because it’s limited. Make plans and understand why those plans are necessary. WRITE YOUR ADVANCE DIRECTIVE. Make sure your loved ones know where it is and what’s in it. Make peace with the idea of your own death, because it is going to happen and it doesn’t have to be a nasty shock when it does. We’re all going to die. It doesn’t have to kill you before you get a chance to stop breathing.
Build a better relationship with your own pending demise. Use the words DEATH and DYING, normalize it, and maybe, just maybe, we can all have some repose before we are In Repose.
When I was very young, barely old enough to even know what death was, I saw a show on PBS about the (still very new to the public at the time) AIDS epidemic. I don’t remember anything else about the show, but there was one segment that stuck with me for the rest of my life.
A man, in a hospital gown, sitting in a wheelchair. He was emaciated, very clearly capital-D-Dying. And he made eye contact with the camera, and then sang a very jaunty song about his own, very eminent demise from the disease. I remembered clearly three things: that it was basically about why you should be kind to him as he was going to die soon (particularly a phrase “forgive me when I’m mean”), a quirky little instrumental break during which he tap danced while sitting in his wheelchair, and the chorus phrase “cause I’ve got less time than you”.
And it stayed with me. I was…let’s see when this was released….ooh. I was 13. I remember clearly thinking that the song was funny, and not being sad for him at all, even though I knew he was going to die, and I knew that he knew it, too. The emergent Spooky Kid in me delighted in how morbid the whole thing was, and i loved the twisted sense of humor, but what resonated with me 30 years later was not the morbidity. I actually admired him for knowing that he was going to die, and having made peace with that, he was able to be so forthright with his needs. Since he knew there was literally nothing he could do about it, he decided to have such a wicked sense of humor about the whole thing. It was a quiet, desperate, dare you not to look away from it strength. LOOK AT ME, I AM DYING AND THERE IS NOTHING ANYONE CAN DO. NOW LAUGH WITH ME. He saw his own pending demise, and owned it. I wanted to be like that, too, if I could. Strong, unafraid, and funny.
The image of the tap-dancing dying man never left me, and indeed after my diagnosis, any time I prioritized my own needs over those of someone with a muddier, less terminal future, the chorus would pop into my head. I justified inconveniencing people (whether they actually felt inconvenienced or not was irrelevant to my broken brain) with a jaunty internal chorus of “cause I’ve got less time than you”.
I finally remembered to look for it online, not really expecting to find it. It was (exactly!) 30 years ago, pre-internet, and all I had to go on was “man in wheelchair AIDS song less time than you”. But I did find it. It took some doing to find an actual video (especially one that wasn’t an impossible-to-understand audience recorded live version), but my Google-fu is strong. His name was Rodney Price, and he died two weeks after filming this. He is my role model to aspire to while dying today, and he was my very first Death Positive Hero.
Clinic was Monday! Let’s break down how it went, shall we?
PT/OT: My hands now no longer register ANYTHING on the strength test. Fuck. My arms are still plenty strong, though. My biceps are a force to be reckoned with from essentially doing push-ups on my walker every day. I have an appointment to follow-up with Deb the Awesome to reimagine my spider hand braces, since my wrists droop badly enough now they’re not helping much. It doesn’t do a lot of good to keep my fingers propped up if my hands as a whole are curling under. My finger joints are doing great though, still a lot of flexibility in them so I’m not going to be clawhands any time soon. Yay!
Dietician: (Hi, Kelly!) My weight remains stable, so I’m to keep doing what I am doing. I need to keep mindful of feeding myself while I’m at home, now, since I don’t have the routine of work to set that schedule for me. My mom doesn’t know to bring me food unless I ask her because she’s old as hell and eats like, a tic-tac a day and calls it a meal. (Hi, Mom, love you!)
Nurse: I forgot to ask her what my chair weighs. Dangit. It’s written down somewhere in my chart and I’m curious what that thing weighs without me in it. Combined, we are 627 pounds of geddafuggoutmaway. She arranged my appointment with Deb, and I didn’t otherwise have much for her. I rarely do. That’s a good thing.
Social Worker: Have I waxed poetic lately about how amazing the ALS Association is? Because damn. Single-handedly saving my sanity more than once, and saving my ass multiple times. We arranged for them to pick up equipment that I’ve borrowed (FOR FREE) that I no longer need because my disease has progressed beyond their use. We then spoke about some other situations that are stressing me out, like the lack of social services for my elderly disabled mother, and she promised to dig up what resources she could for my mom in our area. She sent me an email not even a day later with a bunch of places to check out. THAT is how amazing ALSA is. My mom’s not even on their roster, but because helping her would help ME, they were totally on it. I LOVE THE ALS ASSOCIATION.
Neurologist: Usually I’d be seeing Dr. Goslin, but today I met with her new partner. I’d seen him talk at the ALS Research Symposium, and I’d been given his bio before when I was asked to write something up for him explaining why the ALS Multidisciplinary Clinic was such an awesome thing. It was nice to meet him, and the dude has one of those old-school doctor bags that J wanted to steal. Plus for geek. It was a general get-to-know-you kinda appointment.
Speech: These appointments always go fast because I’ve got no symptoms at all yet. Puff up cheeks, move your tongue, eat this dry-ass graham cracker so I can watch you swallow. NBD, nothing to report.
Respiratory: Yeeeeeah this is always my absolute least favorite, not least of all is because it’s actually HARD. I’ve actually been noticing decline here, and since this is the part of ALS that actually IS going to kill me, I don’t like having a concrete measurement of how shitty my disease is. And yet. I want that measurement, so that I know, so that I can plan, and manage expectations. I came to this appointment knowing my breathing has gotten a bit worse lately; it’s taking a bit longer to recover when I exert myself, and there’s been a few times I wake up in the night because my breath is a little short. I also had to report that my CPAP machine (which I am now supposed to use every night) is busted, doesn’t power on at ALL. We are going to get me a new machine, called an AVAPS and I have no idea what the difference is because I keep forgetting to look it up.
“Noninvasive mechanical ventilation with average volume assured pressure support”
That tells me nothing. 2 secs.
…Oh. It’s…basically a non-invasive respirator. So it’s hardcore. OK then. That’s…intimidating. But I had the choice between getting my CPAP replaced or getting this new hotness, and since I still have Cadillac Intel Insurance for another year, I really want to get the expensive stuff now.
With that out of the way, we did all the usual tests. First they stick a rigid plastic thing in my mouth and I exhale as hard as I can to make these little indicators move; it measures cough strength. Cough strength is still normal; it was down ten points from last visit but she wasn’t worried about that at all. The next test involves a soft plastic mask over my nose and mouth and inhaling sharply; I always ace that one by going beyond what it measures; I guess I’m really good at..sucking…? Monday was no exception. The last test is the worst. Both in what it portends, and the work it takes to perform. My dudes, it is HARD. It blew goats even when my lungs were as strong as ten oxen. It involves inhaling deeply, plugging your nose, and then blowing out as hard as you can, for as long as you can, while getting encouragement shouted at you to GO GO GO MORE MORE MORE MORE and then when you can’t possibly exhale anything else and you feel like you’re going to pass out, another sharp, fast inhale.
Do that three times.
It actually makes J a little uncomfortable to watch, because it’s so obviously hard. It’s intense, it feels like hell, and at the end you have a number that represents your average lung capacity. When I started going to clinic, my scores were over a hundred percent – a very strong set of lungs. Over the last year, I’ve watched that number go down. She wasn’t concerned, really, even 80% was still really good! and she had no recommendations for me except to continue with the breath stacking exercises, which is where you inhale as much as you can and then use a balloon and tube to squuuuueeeeeeeeeeeeeze more air in. and hold. and release. And when you’re no longer light-headed, do it again. And again. I often describe it as reverse drowning, because that’s what it feels like. I do that, but not as often as I should. Six months ago at Clinic I hit 70% and she was a little less cavalier about me not doing them every day. 3 months ago on Clinic day, the machine was busted so I was spared. She wasn’t worried about it though, as my other tests were about the same as last time and she expected the same for this test, too.
I knew it wasn’t going to be the same. I feel a difference. When I eat too much food, I can feel that it’s harder to breathe – not that I’m short of breath, exactly, but I feel that when my lungs don’t have proper room to expand, there’s less strength in my diaphragm to bully the rest of my guts out of the way, maybe. It’s not harder to breathe, exactly, but I notice that I am breathing. And I was keenly aware that the breathing test this time was the hardest it’s ever been. I could feel veins on my forehead. She told me the result.
I’ve gone down 10% in six months.
I am now to do breath stacking twice a day, and sleep with the AVAPS every night, once it arrives. Next Clinic maybe we’ll do the respiratory early; having it be the very last thing in the day might have fudged my numbers a bit since I’d be tired. But somehow, I didn’t think that will matter. I didn’t take it well at all, and was in a shitty mood the rest of the night, and spent pretty much all day Tuesday crying or sleeping. I feel better now, hence why I have it in me to post tonight, but it kiiiiinda cemented something I’ve been thinking the last few months, something that I haven’t said out loud or posted or anything because I don’t want panic, either from myself or from any of you.
I am pretty goddamned sure I don’t have another 4 years.
I mean, it would be nice? But I’m not going to live to 50. I know that. I’ve been really fucking lucky to make it 4 years, and still be able to be on my feet awhile and wipe my own ass and everything. Some people with ALS don’t make it through ONE, and I’ve already had four, officially diagnosed, and probably closer to six since symptoms first appeared. I’m so, so fucking lucky. I get to see my death coming and plan for it. It was just rude as fuck to see that imaginary timeline become somewhat ..truncated, from what I was telling myself. But now, the part of ALS that will kill me has officially begun to kill me and I don’t have as much time as I thought.
You know what though?
It really is. This is how ALS goes. This is normal. It’s okay. I’m alright.
Tonight, I am sanguine. There will be more freaking out; count on it. (See you at 3am, stupid brain) At this exact moment though? I have a clarity most people will never, ever experience. I see a world in 5 years without me in it, and it’s a good world and those I love are doing fine, in that long-term place. There’s a delicious release that comes with knowing so far in the future is officially Not My Fucking Problem. Today though, I am making many short-term plans. Hangouts with friends. An art show opening. The Walk to Defeat ALS on Sunday. A zoo trip with family. Neil DeGrasse Tyson – TWICE – in November. I still have a future to plan. It may be abbreviated, but goddammit I have SOME time. I get to make plans. It’s a fucking privilege to tell someone I’ll come to an event in April and know I can. After that. Who knows. My timeline is finite, truncated, and not guaranteed, but I have one. I can see what’s coming and make peace with it before it happens. I get the rare and amazing privilege to become friends with my own death.
I’m awake. Why the hell am I awake? omigod so thirsty
Was dinner that salty, Body? driiiiink sooooomethiiiiiing
I’m comfortable though, and the only thing I have in here is diet soda which has like, ALL the sodium in it. I’d have to get out of bed and get dressed to get a drink, and that’s not going to be easy to get a glass from the cabinet or anything. HEY HEY HEY GUESS WHAT
Oh god. Yes, Brain, what. SOON YOU WON’T BE ABLE TO DO IT AT ALL EVEN IF YOU HAVE WATER RIGHT IN YOUR FRIDGE YOU WON’T BE ABLE TO GET IT WITHOUT HELP.
Really? This is what we’re doing now? yo i am still thirsty can you maybe angst later ok
I just want to go back to sleep. Can you just deal with being thirsty, body? It’s not like having to pee. We can wait. OK? i am a parched desert but ok go off i guess
Just gonna lay here and pet my cats and sleep. OK? DO YOU THINK WHEN WE DIE THE CATS WILL HANG OUT WITH US ONE LAST TIME OR DO YOU THINK THERE WILL BE OTHER PEOPLE IN THE ROOM AND THE CATS WILL RUN AWAY?
MotherFUCKER. HEY DID YOU SEE THAT VIDEO OF THE CAT REACTING TO ITS DEAD OWNER’S VOICE? IT WAS ON FACEBOOK A LOT TODAY.
No, I did NOT because I knew it would make me cry a lot. I BET IT WAS REALLY SAD, THOUGH.
I imagine so. DO YOU THINK YOUR CATS WILL MISS YOU WHEN YOU ARE DEAD? hey brain like shut up don’t make us cry
Seriously! crying is really dehydrating
…Seriously?? loss of fluid is really important to me right now ok driiiiiiink soooooomethiiiiing
OK FINE, holy shit, I’m gonna get up and get a cup of water. ok cool but now that we’re standing up, remember how I said we didn’t need to pee?
….Yes? i lied and we are gonna
Don’t you DARE. right now
NO. we’re doing it
LET ME GET TO THE BATHROO….oh, GODDAMMIT. YOU KNOW SOMEDAY SOON WE AREN’T GONNA BE ABLE TO CLEAN THAT UP ON OUR OWN AND WE ARE GOING TO HAVE TO MAKE SOMEONE ELSE DO IT.
…Fuck you both. ACTUALLY WE WON’T EVEN MAKE IT TO STAND UP WE ARE JUST GONNA PEE ALLLLLLLL OVER THE BED AND THEN LIE IN IT. maybe when they come clean up the pee they can bring some water cause we’re still thirsty
I hate you both so much right now.
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.
If the cube move happens on schedule, which I doubt, ten more in-office days.
And then two weeks of paid vacation.
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.
Now that ALS has started to incorporate itself into my subconscious, more and more of my symptoms and new realities have started showing up in my dreams. I can usually still walk. My hands usually still work. ALS isn’t tied into my subconscious self on a permanent basis, yet; it hasn’t become fundamentally part of who I am in my dreams. But occasionally ALS will tiptoe into my dreams and I’ll be in a wheelchair, or I’ll have that dream where you’re trying to run but can’t, but it’s not panic inducing because …of course I can’t.
My current reality with Radicava has apparently assimilated itself into my subconscious as well. In real life, I have a port which is attached to a tube that snakes its way into my arteries. Once a month a nurse comes, and stabs a bent needle through my skin into that port, from which an IV line can be run. We attach medication to that IV line, and thus my infusions are done. Gravity plays a hefty part in this role and the flow can go both ways; we found out the hard way that if there is not medication running into the line, then blood can run out. There has been a couple of times that we’ve been a little delayed in cutting off the flow at the end of the infusion while unhooking the bag, and dark arterial blood starts running up the line. Blood is *supposed* to be able to travel up the line, it’s one of the things they look for when they first access the ports, to know that there is good flow. That’s probably because the first couple of times I’ve accidentally bled into the line he freaked out a little bit. Now we are super casual about it, because it’s honestly no big deal. We just have to push a little saline down the line to get my blood back in my body, and throw that line into the biohazard ban instead of the trash. NBD.
…It is still a little unnerving to know that if I really wasn’t paying attention and things went wrong, when the port is accessed, I could just…bleed out.
I guess my subconscious thought so too. Last night I dreamed that J was helping me with the infusion while we were in some hotel, and somehow the IV bag came off and we didn’t notice. The end of the line just spilled out into nothingness, and I had bled out over a pint before either of us noticed. In my dream J instantly went into panic mode, and started furiously trying to clean up the blood once we clamped off the line, while I assured him that a pint of blood is practically nothing, and people donated this much all the time, and I was fine. I conceded that cleanup was definitely in order, the place looked like a murder scene a little, though. I was more worried about explaining blood stains in the carpet to the people that actually owned the place.
And then the cop showed up.
Suddenly in my dream I’m explaining to a very nervous and suspicious policeman about ALS, and what it is, and what the infusions are all about, and how this was a medical mishap and is not an attempted murder, actually, despite what it looks like, while J is furiously scrubbing blood out of the carpet. I think in the end I convinced the cop that everything was okay, but J was still panicking and worried that he was going to get arrested for trying to murder me.
So yeah, apparently Radicava is normal enough to me now that it’s showing up in my subconscious dreams. That’s a new one.