Surreal

Man, what even IS my life anymore.

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.

Motherfucker.

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

Catching My Breath

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.

I digress.

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.

One breath at a time.

Clinical Anxiety

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.

Hang on.

“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.

60%.

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?

That’s okay.

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.

And that is fucking awesome.

Protip: Maaaaaaybe don’t prey on dying friends?

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

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

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

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

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

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

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

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

Really? This is what’s happening?

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

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

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

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

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

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

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

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

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

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

And then she blocked me.

There..

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

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

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

…..

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

what the ACTUAL MOTHERFUCKING FUCK.

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

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

You absolute PIECE OF SHIT.

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

I’m good with those odds.

What’s Next

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

“So what are your plans after you leave?”

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

“Well good luck to you.”

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

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

“Die.”

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

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

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

Because ALS is a motherfucking terminal disease.

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

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

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

Because I don’t really have one, anymore.

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

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

Hypocrite

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

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

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

Tick Tock

One month as of tomorrow.

Four weeks and five days.

Twenty three working days.

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

And then two weeks of paid vacation.

And then?

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

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

And it IS a justification.

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

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

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

One more month of being valid.

Four weeks plus five days plus two weeks vacation.

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

Six weeks of being justified in my existence.

This is such unbelievable bullshit.

Biding Time

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

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

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

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

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

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

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

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

Unkind

I was told twice yesterday that I had been unkind. Once about a caustic post I’d made that I didn’t realize had such a caustic tone, which I didn’t intend at all. Once about letting in-character anger spill over into an out-of character moment during a game.

It’s fucking with me more than I want to admit out loud.

I want to think I’m patient and a nice person. I want to BE a kind and soft person. With swearing as needed. I also want to think I can take constructive criticism. Both times, I tried to take the information in with a whole mind and open heart. I freely accepted valid points, admitted areas of ignorance – I genuinely did not realize my irritation with a sub-group of people spilled over into a perception of complete disdain and impatience for a related whole category of people. I vowed to be more aware, and work on it, and thanked them for bringing it to me. It’s a brave thing, to tell a friend they’re being a bit of a bitch.

But it’s fucking with me.

I don’t want to be unkind. It bothers me that someone would think I am. It bothers me that I speak without careful consideration, to have words and actions misconstrued.

So I lie awake until 3AM mulling over every interaction I had that day, wondering who else thought I was being a bitch, and what I can do to make amends. Usually these criticisms are self-inflicted, so coming from an external source, that knows me well, is especially jarring.

Before I moved away from Sacramento, several friends told me later, I became a bit of a bitch. My joking a little too caustic. I wondered if it were a subconscious self-defense mechanism, distancing myself from people I cared about in an effort to make it less shitty to leave.

I’m terrified of doing that same thing, knowing that I’m dying. From Diagnosis Day I have been fearful of being that embittered person in a wheelchair, lashing out at loved ones because I’m afraid to leave them. To be remembered as a total and complete bitch at the end of my days, in an effort to somehow distance myself from them so that the parting will be easier. Knowing it won’t help a goddamned bit. I do not wish to be a caustic person with nasty words where my love should be.

I’m glad my unkindness was called out. I’m glad I have time to work on it.

But until I am nothing but kind, it’s gonna fuck with me.

Saddiversary Part the Fourth

Four years ago, I was told I was going to die.

Everyone dies. To know the mechanism of your demise, though, is a terrible and powerful thing. Oh, certainly, something else might kill me before ALS squeezes the breath from my body, but there is now a subtitle to my timeline, a definite path. The future is a language tainted with exceptions and qualifications.

I took the news and buried it deep in my chest that day, taking the bus home alone. I don’t remember what I was thinking. I remember tripping over a curb walking home from the bus stop. I remember wincing internally, absolutely certain that was going to be the catalyst for the meltdown to come. It wasn’t. I picked myself up, and thought to myself, “There will surely be much more of that.” I got home, looked around the house I had just bought, the house I would no longer get to keep, and wondered how the ever loving fuck I was going to break it to everyone.

My life is a timeline of things lost, now, a perverse sort of baby book in reverse. Vashti’s last unaided steps. Vashti’s last time putting on makeup one-handed. Vashti’s last time dressing up all by herself. Vashti’s last time feeding herself. Vashti’s last words. Vashti’s last breath, someday.

For now, I can still speak, and breathe, and feed myself mostly. I need help cutting food these days, a job my friends do graciously. It’s very sweet, even. Walking with a walker is still possible, but exhausting, and it feels more precarious than ever. I stay in the wheelchair when I can. I have the motorized one now, but no way to transport it (but I’m working on that!). My hands are just about useless; I type with two fingers that have very little strength left in them. I need two hands to lift a soda can to my lips. I bought a hand strap yesterday to put eating utensils in because I’m almost unable to grip them. Bladder control is almost completely a thing of the past.

But you know what? Fuck this disease. It doesn’t own me. I have to make allowances for its dumb ass, but it’s not who I am. I am still going to eat at all the fancy places. I am still hanging out with my friends. I am still working. In one week, I will have another birthday. I am still planning for a future, even if that future has heavy caveats.

Because fuck that shit.

Even four years later. Even knowing what it’s going to take from me. Even though it would seriously be so much easier to end it now, before it gets REALLY hard. Fuck that shit.

My saddiversary has come around once again, and it’s one more year I can give this disease the middle finger. It doesn’t fucking own me. Even after I’m a non-speaking, drooly, pees-my-pants useless lump of meat, it won’t own me. Even if I decide to take my own life before it gets that far, it doesn’t win.

One more year down. One more point for me.

Fuck yeah.

Cyborg Status: Confirmed

So uhhh I have my port installed. It was …an adventure. Lemme tell you all about it!

When last we left our intrepid heroine, she had a really nasty reaction to the adhesives on her PICC line dressing. We moved to a different type of dressing that didn’t adhere for shit. The day I was done with the 14 day initial run, my awesome home infusion nurse came by to change the bandaging. She recommended we get the PICC pulled ASAP so I could get the dang adhesives off my skin.

It took a little convincing to get the nurse to refer me for a port; she was concerned that if I had a reaction to the adhesive as it was, having a port would be just as bad. I was concerned about not having tubes sticking out of me at all times; at least the port would give me a 2 week break every month. We eventually secured the referral, and my surgery was scheduled for 12:30 on December 27th, with a separate appointment that morning at 8:30 to get the PICC removed. When I told my home infusion nurse, she arranged to come by that evening (after her company holiday party, even!) to pull the PICC so we could get the wrappings off me and let my skin recover a bit. We love Deena, she’s rad. It was surreal to see her pull the line…it kind just kept coming out, like a magician’s scarf of surgery and horror. It was MUCH longer than I’d thought. And it was friggin’ DELIGHTFUL to have all that out/off. And the shower I was finally able to take was goddamned MAGICAL.

I received a call from St. Vincent’s hospital the next day – the surgeon I’d been scheduled with wasn’t actually going to work that week, could I go to Providence Portland instead? At 9:30am? Sure, no problem. The next day, they called again – sorry, could we make it same time, but back at St. Vincent’s after all? No problem. J worked that day, so I asked my sister-in-law-of awesomeness Jeanette to be my ride.

And then I made a terrible mistake.

OK so I’m a smart person, and with intelligence comes curiosity, and I wanted to know exactly what I was in for with this port. I watched a video of a woman demonstrrating how to access a port; no big deal, kind of persnickety with regards to keeping everything absolutely sterile, but whatevs. And thennnnnnnnnnn I watched a video of a port install surgery. OK, I am not really squicked out by surgery, and I found the whole thing fascinating until the phrase “BLUNT DISSECTION” came up, and the surgeon LITERALLY TORE A HOLE IN THE PERSON BY JAMMING HIS PINKY IN THE INCISION AND WIGGLING IT AROUND. HOLY FUCKBALLS. My brain went NOPE, FUCK THAT, FUCK THIS, AND FUCK YOU FOR SCHEDULING THIS MOTHEFUCKING MEDIEVAL-ASS SHIT. Intellectually I knew it was fine – MORE than fine, because I was gonna be hopped up on Versed and remember NONE of it and get some good drugs afterwards – but the actual crux of the mistake had been watching this video righe before bedtime, so my brain just did donuts in the parking lot for awhile.

The morning of the surgery, I got a call from the hospital – would I mind coming in early? It was 8:30 and I was scheduled to check-in at 9:30, so I was a bit confused, but I told them I’d be there as soon as I could. We parked too far away and I was a sweaty mess when we arrived at check-in, where I was told…I was scheduled at the OTHER hospital, still. I explained the conversations, they luckily sorted it out. I went upstairs, put the goofy little gown on, and waited. The nurses came in, partly to take vitals and start an IV and make sure I wasn’t pregnant, and partly to play peek-a-boo with my adorable niece. The doctor came in to introduce himself and ask if I had questions. he was delighted that I referred to the Huber needle I’d be using to access the port as “the crooked needle”. I was delighted by his use of the phrase “twilight sleep” to describe the conscious sedation I’d be under. They’d give me benadryl in my line along with the sedatives and a dose of antibiotic, he said, hopefully I’d just sleep through the whole thing.

I remember them wheeling me into the surgery, and seeing the GINORMOUS fucking monitor he’d be using to make sure he was placing the port properly, with x-ray. It was weird to see my name there. The several nurses had their A-Game banter going, and we were having a great time explaining names and tattoos to each other. One nurse thought I had an accent, and asked how long I’d been a Yankee. “My whole life?” A male nurse/technician/whathaveya scrubbed me down with a blue solution, making me the world’s least convincing Smurf. I was freaking cold, despite the warmed blanket they’d put over me. The IV nurse told me he was putting the antibiotics in my line now, and I felt the cold sting. he told me he was starting the sedative now, and then I…

I do not remember a thing after that.

I woke up with a very large image of my x-ray on the monitor, showing the line running into my artery. I was shivering. They wheeled me back to the recovery room, and I slept a bit. Jeanette had taken my niece Jewel to get some lunch or something. They brought me a turkey sandwich, which I devoured. They had put the dressing on a bit shitty; I couldn’t raise my head all the way, or turn my head much because of the way my skin was taped up. It itched a bit. I was given discharge instructions and no pain killers (“Just take some Tylenol”). My sister came back, I got dressed, she took me home, and I slept some more.

The next morning I was aware something was up. I was naughty and pulled the dressing off a bit to allow myself the ability to raise my fucking head, and where the dressing had been tugging was now an angry red wound. I was very itchy. All over my chest. Angry red hives, all over my chest, up my neck, and across my chin. Tylenol, it turned out, did not fucking suffice, so I took some of the hydrocodone I had leftover from breaking my ankle that the doctor hadn’t wanted to give me either because ibuprofin should be fine. YOU JUST TORE A HOLE IN ME BIG ENOUGH FOR A 1 INCH SQUARE MEDICAL DEVICE AND ALSO CUT MY NECK TO SHOVE WIRES INTO MY VEINS – NEWSFUCKINGFLASH TYLENOL AND IBUPROFIN ARE NOT SUFFICIENT FOR THIS. BLUNT. DISSECTION. BITCHES. I slept some more. I woke up to even angrier hives, annnnnnnnnd my eye was a swollen bag of fluid.

IS THIS NOT LOVELY?

So uh…yeah. I was having an allergic reaction to something. It couldn’t be the dressing itself, since the hives were everywhere. It got worse and itchier over the night. I had a different IV home nurse visit that day, to change the bandage since they’d thoughtfully left a needle in the port for me to start the infusions, but I’d bled a bit so there was gauze under the dressing which needed to go. She was very concerned about the reaction, namely that it might be a reaction to the port itself. My delightful friend Lizzie was coming over that day with delicious food for me, and she kindly picked up some Benadryl on her way in. Luckily I had a doctor’s appointment already scheduled for the next day, for an unrelated issue and holy FUCK will I rant about that in a bit. I took Benadryl, ate delicious home made food, and slept a lot.

My PCP is a cool guy, and didn’t mind dealing with the reaction as well as the initial problem we were scheduled to deal with. He suggested two more antihistamines in addition to the Benadryl, and to contact the hospital if it didn’t clear up by Tuesday (Monday was New Year’s). Luckily it did, mostly. I think the problem was the smurf shit they scrubbed me down with, since the hives pretty much appeared everywhere they used it. I have no explanation for my eye becoming a blister, tho.

We’ve now completed the second round of infusions, the port works beautifully, and we pulled the needle out last night. I am once again dressing-free for two weeks. The scar is already nearly healed up, and the itching has almost entirely subsided now that I’ve got no more adhesives on me. I can feel the port under my skin, and it’s weird.

Now I am become cyborg. beep bloop bleep.

Accommodation

Fun fact: I AM A GIANT NERD.

You already knew this. Probably. Almost definitely. If not, welcome to me; I’m a giant nerd.

Most every Wednesday, I play a table top role-playing game with a group of guys that have become good friends. We are virtual murder hobos, adventuring and killing monsters and arguing amongst ourselves about which monsters need killing, and it’s a lot of fun. I absolutely adore the group. The only hitch at all is that my stupid disease gets in the way a lot – I’ve had to miss a lot of games because of appointments, or a couple of times I’ve fallen and hurt myself, or sometimes my mana is just too damn low to deal, or once or twice Sadbrain said nope. Luckily, they’re very cool about me missing games; they understand. We had a talk once to just make sure that it wasn’t that I was not enjoying the game but was too polite to say so, so I was making excuses; once they were assured that I absolutely enjoyed the game but my disease is stupid, we were all good.

Part of that hitch is getting to the place we game. It used to be at the storyteller’s house, which had two steps and no rail. It was…not fun getting inside. Luckily before that became an impossibility, we switched to another player’s house, which has just one step. Much easier. Still an effort, and some days a Herculean one, but better. This last Wednesday, I had low energy, and I sarcastically complained to J as we were heading over, “Tim needs to get a fucking ramp.” If J didn’t drive a little car, I’d probably have bought one of those portable ramps to just carry around with us for these occasions. It would definitely make things easier. I’d never actually expect someone to modify their home for me, obviously. But some days it probably would be the final straw in deciding if I had the energy to go to to game or not. Stupid disease.

We pulled up to the house, and everyone was standing around outside, which was…odd, because it was cold as hell. We usually start game at 5:30, but we were told tonight was a late start, so maybe everyone had just gotten there. I got out of the car, and they all kind off…turned to face me. Matt, the storyteller, told me that they all understood that I had hella circumstances and that it made it really hard for me to get to game sometimes. For a moment, I thought, “OH shit, they’re kicking me out of game because I’m unreliable. Well, I can’t really blame them.” He continued to say that they really appreciated the effort I made to show up, and that they all wanted to make sure that I’m able to continue doing it for as long as I can, so…they all parted to show me something behind them.

Guys.

GUYS.

THEY BOUGHT ME A FUCKING RAMP.

To get in to the house. A ramp. For me. And they even put stickers all over it.

For me.

One of the worst things about acquiring a disability is feeling like you’re a burden. Your friends and family have to make plans around your diminished abilities, suddenly old traditions have to be abandoned. Even though everyone insists – INSISTS – that you’re fine, they want you there, they’re happy to make the changes, you can’t help feel guilty that they’re missing out on cool things because of you. A lifetime of Sadbrain convincing me that I’m not worth the effort in the first place does not help the matter, and I’ve worked my whole life to make that voice be silent, with very mixed results. In the meantime, events are missed, changes are made, things are rearranged, and my friends and family do their best to accommodate me and tell me it’s alright.

Funny word, accommodate.

It can mean providing sufficient living space, or making a compromise, or adjusting to something new. It means somehow going out of your way for someone. In my world it’s usually got a slightly cynical sister word attached, “reasonable”, when dealing with work and places of business. Reasonable accommodation. Legally doing the absolute bare minimum in order to convince ADA enforcement laws that you’ve done …something. (I’m a little bitter, yes)

When it’s your friends, though, and you know they sure as shit didn’t HAVE to do anything, that they made an effort because they legitimately want you around, and here is absolute proof? Yeah I totally teared up. It was an amazing thing. A selfless thing. An important thing.

It makes dealing with it easier. It makes being alive easier.

It makes it WORTH it.

Time to Take the TMI Train to Tinkle Town!

Ok seriously, this is a TMI warning. There be candid, unglam talk about pee and even some butt stuff. So uh. Yeah. Proceed with discretion.

Soooooooooo the main reason I have not been posting is two-fold, with the reason being DEEEPRESSSSHUNS, stemming from 1) my stepfather dying and now my mom lives with me, and 2) a new symptom which is KICKING MY ASS in all kinds of fun physical, mental, and emotional ways. My surprise roommate situation – that will get its own blog, don’t you fret. Things are actually settled and pretty ok on that front now; that’s the GOOD part about avoiding blogging during a crisis – you get to walk in at the end of the story!

Ok so I just checked the archives for the first time I wrote about this thing and it was March of 2016. So I need to stop calling it a new symptom. Duly noted, self. Well. It was kinda a one-off thing, it happened a couple of times? But the last few months it’s been a serious deal and I am seriously not dealing well.

As you may have surmised, it’s about this:

And then I was just…peeing.

“Urge incontinence”. Only…there’s no “urge” part anymore. It’s closer to say that it will occur to me that I haven’t peed for awhile and should prolly do that, or I kind of have to go, and then before I can get to the toilet, I am just peeing. Everywhere. I’ve had to leave work early because I had to change my clothes, I’ve had to change clothes I literally just put on. And it’s not like I’m peeing in my chair, oh no, it fucking WAITS until I am alllllllllmost to the toilet and then just lets itself out all over me and the bathmat in front of my toilet before I have the chance to undress, much less sit the fuck down. Unless I physically cross my legs to contain it – and often, even then – there’s a mess.

I’m 42 and I wear incontinence pads every day now. As I posted previously, a lot of the articles about ALS say that usually bladder and bowel function aren’t affected. I took a lot more comfort in that than I realized. Like..sure I might be choking on my own spit someday, but at least I won’t be sitting in a puddle of my own urine. But no, I’ve not even begun to have speech or swallowing problems yet, but I have left trails of pee from my room to the toilet – while WEARING a fucking pad. They only hold so much, and I’ve peed through even the overnight Poise pads more times than I can count.

Fun fact – Poise pads are rated by flow, just like menstrual pads, onle they don’t use words like “light, medium, and heavy”. They use words like “drips, dribbles, spurts, and gushes”.

Additional fun fact: menstrual pads and incontinence pads are NOT THE SAME THING. Ask me how I found out! At work!

So, last clinic, I brought this up, and we started the road to Figure Things Out. It has NOT been a good road.

Like, at all.

We started the easy path, with a medication. That did nothing. We upped the dose. Nothing. I was referred to a urologist. He had me pee in a cup to make sure I didn’t have any weird infections – this is not easy any more. You kinda need functioning hands to maneuver this, and remember this point. It becomes VERY important later. He then did an ultrasound on my bladder to make sure I was emptying it completely when I peed. I do. He shrugged and gave me samples for a new med to try. I did. They did nothing. He gave me another months’ supply in samples, and said he was previously going to do a couple of tests that day, but given my whole situation, he instead referred me to his colleague, who could do an ENTIRE workup. He said they’d call to schedule that; it’s an hour and a half appointment that involved probes and a scope up my urethra, soooooo be prepared for that I guess.

A week later, I get a call to make the appointment, and they send me a pamphlet of what to expect, and a sheet of instructions on how to prepare. The word “enema” is involved. Two enemas, exactly. One the night before, and one the morning of. The informational pamphlet says they’ll be sticking a scope into my bladder, to take a look, they’ll also be doing a flow test which means I sit on a commode and pee to determine…something, I guess. How fast I pee? And then they’ll be filling my bladder with sterile saline and stick a probe in both ends, and then have me do some tests like bearing down, and standing up. I guessed there would be puppy pads all over the room for that part. I was not looking forward to this, like, at ALL.

And so, the weekend before the appointment, I had to muster the courage to ask J to take me to the store so I could buy a freakin’ enema. He’s actually been amazing about listening to the really awful details of this whole bullshit Godzilla Disease, and took it in stride, and sympathized about the scope part cause he’d had that done. We bought what I needed, and then the night before the appointment, I set forth to do the thing.

OK. Here is where it is important to remember the part about “you kinda need functioning hands”. If you’re not familiar with an enema, it is essentially a flexible little bottle of saline with a thoughtfully, pre-lubricated plastic tip. You insert the thoughtfully pre-lubricated tip into your butt, squeeze the contents of the bottle in, and then wait for nature to do its thing. The bottle, for reference, is smaller than a standard soda bottle by a lot. It’s also full of water, which is heavy. Sooooooo don’t actually picture this, because gross, but…entertain a brief thought about what kind of difficulties a person with ALS may have in this situation. Especially when she is also overweight, and seated on a narrow, raised toilet seat with bars that prevent her from say, separating the knees as far as one might wish to get access to that business.

If your imagined, hypothetical scenario included dropping the bottle in the toilet more than once, and then ultimately only managing to squeeze maybe a third of it in? Congratulations. Now do that again in the morning.

The night before the appointment, after dealing with the ahem..effects..of the ordeal, I have a worrying thought. The clinic has more than one urology office location. There’s the one at the hospital in NW Portland, where I’ve been seeing this dude, but they ALSO have a location in NE Portland, where Dr. Goslin is. The urologist just mentioned a colleague. Same office? I scoured the paperwork I had, nothing had an address on it. It was Monday night at 10. I couldn’t call anyone. I checked the web portal for the clinic, and they had NOTHING about upcoming appointments anywhere. I could check every fucking thing else in my medical files with them, but nothing about an upcoming appointment. They hadn’t called with an appointment reminder.

I took my chances and went to the same clinic. And…yeah, you already guessed it was the wrong fucking hospital. Amazingly, they had another opening at the right hospital the very next week, so I made that appointment. After the month I’d been having, and the whole enema ordeal and the humiliation of that and the frustration of my hands just not fucking cooperating enough to do this, and the nightmare scenarios of thinking I’d ever have to ask someone for help with that, and paying $30 on a Lyft to the hospital and knowing I was going to have to spend another $30 to go home….I went into the hospital bathroom and sobbed a lot. Then I went home and took a nap.

The next week, I had better ideas about how to do the prep work. It went better, but also involved having to do the thing twice, since I could still only get a half dose in. The morning of, I had a complete incontinence issue and peed alllllllllll the fuck over m,y bedroom carpet and the bathroom tile and the bath mat and the toilet seat and everyfuckingwhere. And then after I cleaned it all up, I had to deal with the second dose of enema funtimes, and then got dressed and called my Lyft. It is 20 miles from my apartment to the hospital, mayyyyyybe 45 minutes with traffic. I left around 7:30 for an 8:30 appointment. There was a 25 minute traffic delay. I got to the hospital at 9AM. When I realized I was going to be 10 minutes late, to a 90 minute appointment, I thought about calling them to apologize but didn’t think I’d missed the appointment It was an hour and a half, and they always keep you waiting 10 minutes in the lobby anyway. When Waze bumped the arrival estimate to 8:45, I contemplated having him just turn around and take me back home. When the arrival time hit 9AM, I just kinda…turned off and knew I was showing up just to reschedule with the receptionist. I got to the office, explained what happened to the Eastern European lady, told her I realized at this point I was probably going to have to just reschedule the whole thing, and she looked at me like I was stupid.

“You have to PLAN for these things,” she told me like I was a child. “You can’t think traffic isn’t going to happen.”

“I planned a 15 minute buffer,” I told her. “It took 45 minutes longer than it should have.”

“You have to think about traffic,” she shook her head at me, exasperated. I guess she realized I was very, very close to tears, because then she said “I’ll see if they can get you in. But I don’t think so.”

Cue about 8 minutes of me leaning against the counter while she talked to the other office folk about how I seriously expected to be able to show up 30 minutes late and then a muffled conversation around the corner with the nurses, and I was JUST about to tap on the glass and remind her snarky bitch ass that I had ACTUALLY apologized and asked to fucking reschedule in the first place when I GOT THERE when she came back and said they could do PART of the appointment today, and maybe if the next person doesn’t show up for their appointment, we could get it all done.

We did not, in fact, get it all done.

Wanna guess which part we did not get done? The part that required the enema prep? OH WELL DONE YOU GET A PRIZE. We DID get the part done where they put numbing gel in my ladybits and then jammed a camera scope in there. I got to see the inside of my apparently healthy bladder, and even watched my kidney spit a blurble of pee into it. I did the pee-over-a-cup-on-a-scale test, too, and then sat in the room alone with no underwear on while we waited to see if the next guy showed up. When he did, I was ushered out to the lobby to reschedule without being given a chance to put said underwear back on, and then stood at the counter with a breeze up my dress while I waited for Ms. Thing to get me another appointment. At least she was equal opportunity bitch, because another dude came out of the office and needed some followup something, and she barked at him to just sit down and she would get to him in a minute. And then told me that she just couldn’t STAND when people just HOVERED like that. And then she tried to be sweet and called me darling when she found an appointment a month away “so much quicker than I thought for you” and made a point of scheduling me for the LATER time, and wrote my appointment time as 15 minutes earlier for arrival on the reminder card. Like…yeah, I GOT it, bitch. I WAS LATE. And then I went outside and got a Lyft home that cost $40, like the ride in, and I guess the worst part is how everyone assumes I have a magical support network for free that can help with enemas and free rides where I need to go so it’s just an inconvenience to THEIR asses when I get caught in traffic or they send me to the wrong fucking hospital in the first place.

Oh, and this was on Halloween.

So now, I get to wait a month, do enemas again, and in the meantime just continue peeing myself all the time because it’s not at all disruptive to my life? And then pay another $80 in Lyft fare to have probes shoved in me? And in the meantime, the urologist’s advice was to do some Kegels. IF I COULD CLENCH THOSE MUSCLES IN THE FIRST PLACE, LADY, WE WOULD NOT BE TALKING TODAY. DO YOU KNOW WHAT THE FUCK ALS EVEN IS. It’s when you try to use a muscle and CAN’T. BECAUSE THE MUSCLE IS GONE.

So yep. I’ve not been living my best life lately. This has been really hard. And humiliating. And a big fucking mess. In every sense of the word.

Next time I’ll tell you about clinic day and all that. This was a difficult post to write. I’m going to go look at some cat pictures or watch some jellyfish for awhile.

Broken

As usual, I can’t tell you exactly why it happened, what was the mechanism, only how it happened. I was in the bathroom, turning left at the sink, and I went down. Despite having a death grip on my walker, I fell to my knees with my feet doubled up under me. I’m getting pretty good at falling, but I was immediately aware that Something Was Amiss.

What happened next was a full five minutes of writhing and howling on my bathroom floor while my two cats freaked the fuck out. Now, I have a pain tolerance that has impressed doctors. I developed dry socket after a tooth extraction and was so unreactive when the dentist was packing it, he had to check that I hadn’t passed out. But this? This fucking hurt. There’s a difference in your body, when you’ve hurt yourself versus really fucked something up. A primal signal somewhere in your animal brain of “oh shit we have done it now.” Outside of a few memorable migraines, I’ve never been in so much pain. My stomach was queasy and I was visibly trembling as I tried to sit up, tried to breathe. Shivering. Panicking. Every movement spurred a fresh tirade of wordless howling, one long string of OWWWWWWWWOWOWOWOWWWWWWWWW and I’m honestly surprised that the neighbors didn’t call the police.

…I’m kinda pissed off that they didn’t, if I’m being honest. I know they were home, and I know how well sound travels across our apartments, and the fact that I was yelling myself hoarse (literally) and no one came? Pretty pathetic.

I tried to text J with my SmartWatch O’ Doom, but it told me SMS was unavailable. The shit, watch?? WE WERE SUPPOSED TO BE A TEAM IN EXACTLY THESE SITUATIONS. THIS IS WHY I BOUGHT YOU. I knew I could call him, though, or even 911, with the thing, but I resolved to try to at least give myself a few minutes to breathe and calm down and hopefully the pain would subside enough where I could think straight. I’d call J if I couldn’t get myself off the floor, and text him if I could. OK. Think. Plan. Move. Slowly.

I still don’t know how the FUCK I managed to get myself on my bed. But I did. I messaged J that I’d hurt myself and thought I needed to go to urgent care. My ankle was already puffy, and my poor previously damaged knee was pissed off again. He offered to leave work immediately, but I told him I could wait the 90 minutes for his shift to end. I didn’t think I broke anything, but even if I had, 90 more minutes was not going to make it more broken.

PROTIP: BROKEN LIMBS ARE NOT ACTUALLY LIFE-THREATENING EMERGENCIES. THEY JUST SUCK.

I popped three Advil and waited. The trouble with ALS is that you can’t really inspect yourself for a break – I can’t wiggle my toes on a GOOD day. It felt like a sprain, but I had no real frame of reference as I’d never broken a bone before. Everything still moved, no grinding feeling, it just hurt like hell. I hoped it was just a sprain.

Basically, I was fucked if it was a break. I’m already reaching the end of my ability to get around with a walker. I can’t use crutches, so a cast – or God forbid SURGERY – would pretty much be the end of me walking, ever. It would mean a wheelchair during recovery, after weeks of which I likely wouldn’t be able to get back on my feet. I tried not to think about it too much, and waited. Whatever I did to myself, it was bad, but I optimistically didn’t think it was THAT bad.

J came and got me, he helped me put clothes on (it was a Work From Home day, I don’t put real people clothes on when I don’t have to) and on to the walker so he could push me out to the car. It was about 5:45 when we got to Urgent Care. He got me into one of their wheelchairs and inside, and we waited. They took us back to a tiny little room that wasn’t big enough to turn the wheelchair around in and we waited. They moved us to a bigger room that we COULD turn the wheelchair around in and we waited.

See also: Broken/Sprained Limb = not life threatening emergency.

The doctor finally came in and did the obligatory I AM GOING TO HURT YOU A LOT BY PRESSING AND PULLING ON YOUR HURTY BITS AND ASKING IF IT HURTS torture session. Palpitation damnation! He recommended an x-ray of my ankle, which was turning quite purple by then. He seemed unconcerned about my knee, even though I told him it also hurt a lot and had been previously injured. Luckily, there was an x-ray lab onsite so I was able to get that done right away.

…Well I SAY right away, but the x-rays took forever because I fucking have ALS. Why NO, Nurse, I can NOT stand up on one foot to get on to the x-ray table. And your little 5 foot nothing ass is not going to be much help. Also not helping? Being in so much pain I’ve got cold sweats so my palms are slippery, so it takes like 8 tries . Once we managed to get me on the table, it was still a conversation about no, I can NOT just lift my foot a little to the left. I HAVE ALS MY FEET DO NOT WORK LITERALLY AT ALL. I CAN NOT FLEX MY TOES. I CAN NOT TWIST MY BODY THAT WAY, I CAN NOT ROLL OVER ON MY SIDE WITHOUT A GRAB BAR. FOR MEDICAL PEOPLE YOU SURE AS SHIT ARE NOT CAPABLE OF HANDLING PEOPLE WITH MEDICAL PROBLEMS.

We finally got the images she wanted, and then I was wheeled back to the room to wait some more. The three little Advil I’d taken had worn off their little edge-blur loooong ago.

The doctor returned in a little bit with a printout of my x-ray. “Have you previously injured your ankle?”

Confused. “No?”

He gave me a sympathetic look and handed over the x-ray. “I’m afraid it’s a fracture.” He showed me the little chip of bone that had broken away.

My busted-ass ankle.

FFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCK.

FUCK FUCK FUCK

He started talking, about making an appointment with the orthopedic specialists, about how they would splint it for me tonight in the meantime, how I was to Stay The Hell Off Of It. I asked if I could have some pain killers, maybe? and he said he’d give me a couple of tablets, sure. He left to write it up, telling me that the nurses would be in momentarily.

When we were alone, J asked if I was okay. I’d voiced my concerns about never walking again, and I wasn’t sure. Mostly I just hurt. The supercool nurse assistants came in, splinted and bandaged me up, and brought me the scrip to hand-carry to the pharmacist. I was free to go. We got milkshakes on the way home. J was amazing as usual and got me settled in and medicated and hung out with me for a little while, and then I slept.

Turns out breaking a bone hurts a lot and sleeping doesn’t make that go away. Especially when you need to elevate a limb and oh, what do you know, you have cats that like to stand on high places! WHAT THE SHIT MOLLY. I worked from home a bit the next day, I had lunch with J and my friend Eric when they brought me food, but mostly I slept. I made an appointment with the orthopedic specialists for the next day, to determine the next steps.

That turned out to be a ridiculously short appointment, because there was precisely fuck all we could do about the break, turns out. I had essentially sprained my ankle SO BADLY it pulled a chip of bone away. The chip was too small to screw back in without it disintegrating, so no surgery needed, and the damage was in such a spot that a cast would be useless. I was given a brace that hurts like the devil to wear and told to elevate, ice, medicate, until I felt like I could put weight on it.

I…guess that is the best outcome. I won’t be disabled by surgery or medical equipment, only by my tolerance for pain. For now, I’m mostly kicking it in bed with my foot propped up, mostly weaned off of the Norco, traveling by wheelchair as needed.

Oh. yah. Wheelchair. BECAUSE MY FUCKING WALKER BROKE ON SUNDAY. AAAAAAARRRRRRRRRGH.

The Universe has apparently had it with my shit.

J went out and bought my new one today. I will sticker that bitch up, too. And hopefully, soon, be using it to walk with for a little while longer.

Bruising for a Cruising

Okay, I have to tell you about this stupid thing that happened, because then I can focus on the good parts, and also tell you something good that came of it all.

TL;DR: ALS RUINS EVERYTHING EXCEPT MAYBE DRAMATIC ENTRANCES.

So, I went on a cruise. I’d arbitrarily decided I wanted to do that, last year, as a bucket list thing. Cruises seemed cool, and at the time I was envisioning myself spending a week on the ocean, cruising to Alaska, taking the time to mentally collect myself and write all of my goodbye letters and look at the water. My friend Beth has been trying to get me to go on this one geeky cruise, but it was in Mexico and I’m not a tropical person. At all. And then, well, my hands stopped working so well, so it was less important that I have all the alone time, and then the geek cruise announced that Zoe Keating was going to be one of the performers and suddenly I am going on that fucking cruise, you’d better believe it.

It’s this one: https://jococruise.com/

One week of music and comedy and geekery. Puce, Lance, and Tam came with me, and we were gonna have a hell of a time and I was going to work up the nerve to say hello and thank you to Zoe Keating, and I was going to look at the water for hours and maybe have a cocktail and perhaps see a whale. And I did all those things and so so so many more. It was incredible.

…Except for this one thing.

From the start, I had concerns about accessibility. I can’t do without the walker, these days. I use a cane to get from the car to the grocery store where I can use a cart to lean on, or I’m using my walker. I wasn’t terribly concerned about the ship itself, though, I mean, these things are practically built for old people, right? I had a quick look at the cabin floor plan and realized with one week to go until the cruise that the bathroom was not even a little bit accessible. I sent a very apologetic and frantic email to the amazing planner people, who totally came through and switched me to an accessible cabin with grab bars and everything and it was all saved and glorious! (HOORAY FOR THO) ..Except for the shore excursions, I was still wary of them. Now, I realize fully well that the A in ADA is for Americans, and the rest of the world is not exactly accessible, which is why I’ve become reluctant to do a lot of traveling. But I completely intended to make do, so long as they could get me to shore, which they promised they could. And I tentatively believed them and didn’t worry about it at all until the day before the first one.

We were going to stop for the most of a day in Cabo. Unfortunately, there was a thing on the ship I wanted to do, right in the middle of the day, so we stopped by the front desk to ask how the disembarking would go down, to see if the hassle was going to be worth it for just a couple of hours. The town was too small to dock in, so they were offloading people by tender, which is a small boat, the woman with a delightful German accent explained. There wasn’t a rail, and there was a small gap between the ship and the tender that would wobble with the waves. Due to liability issues, they could not carry me in, but there were people on both sides to give me a hand. She assured me it would probably be fine. I had my doubts.

We skipped Cabo, and the event I wanted to go to was postponed til Friday, so I wound up spending the whole day on the ship, drinking fake mojitos and staring at the water and having a nap. SO HORRIBLE, YOU GUYS, SUCH MISERY WOW. CRUISES ARE THE WORST. The next day was Loreto, though, and not only a local food festival but an all night concert (Ted Leo will indeed rock your face off, so there was no way I was missing that). I vowed to get my ass ashore and do some sightseeing come Hell or high water – and yes the irony of that is not at all lost on me. The morning came, and so did my apprehension. Again, too small to dock so we were using tenders to get ashore. Lance went to the launch site to see how hard it would be to get me on the boat, and he assured me that it was a little gap, the water was calm, easy-peasy. They’d be there the whole time to help, and I knew they absolutely would. It wound up truly not being that difficult, even though I can’t step up a curb anymore, just a little gap and a lot of helping hands. HOORAY FOR THAT.

The ride to the port was nausea inducing, and the dock we wound up in was basically a narrow-ass pier maybe five feet wide, and then a steep as shit ramp to get up to the port. We had to step down from the tender using two wooden boxes made into stairs and yeah, you THINK you already know where this is going, but NO. I made it down the steps just fine with a lot of help from the crew and my friends, and walked across the narrow pier with no problems, and up the steep ramp without falling. You doubters. We made it to the city and looked around; it took forever for me because hey! No proper sidewalks and steep hills and cobblestone streets! Lance and Tam split off from Puce and I to do some shopping, while we looked at an ancient mission church and its museum of artifacts.

And then shit went sideways…literally. Without going into detail, I fell out of the walker and skinned the bejeesus out of my knees. As usual, the worst part was the strangers. It was right in the middle of the road, in front of a restaurant, so everybody and their mother pretended not to be watching but still managed to stare as we tried to get me up. A well meaning couple helped Puce out, and then overstayed their thanks by over-analyzing why I fell and how to prevent it from ever happening again while Puce and I both repeated YES THANK YOU and tried to move the fuck on with our lives. We limped to an ice cream shop, where I ate delicious ice cream from my childhood while trying to forget that it happened. Remarkably, my tights weren’t ruined, it turned out. Hooray! The day was not completely obliterated, but we agreed it should probably be a short day.

We did the food festival, delicious! and then stayed for the first act when the concert started. We decided to head back to the ship while there was still light to see. I was pretty wiped out by this point, but luckily there were taxis provided by the cruise organizers to get me back to the pier. And….again, I know what ADA stands for, but the van that showed up had a wheelchair symbol on it and yet was the most un-accessible van ever. He helpfully provided a little stepstool for me to get up into the seat with…which was a complete waste of effort because I don’t have the strength to lift my foot up that high to get ON the stool, much less step up with it into the the van. I managed, but it was not pretty and my tights were falling off by the time I was onboard. I discreetly hitched them back up when we got to the dock, I walked so, so carefully down that steep-ass ramp, navigated the narrow pier to the boat…

..and swore a lot because I’d completely forgotten about the fucking steps up to the boat.

Now, I can do a couple of steps if there is a sold handrail, because it’s basically using my arms to haul myself up. Without a hand rail, though, it’s fucking impossible. I quailed, but Puce assured me we would get this done. The diminutive crew took my walker on board, and then I slung my arm over Puce’s shoulder to try the steps. It failed instantly, and completely. I couldn’t help him get me up at all; I couldn’t lift my foot even, on to the first step. The crew tried to help, but they were small Asiatic men trying to assist a fat American giantess, and they were completely ineffective beside grabbing me under my arms and trying to put my feet on the stairs as though the only problem was getting my foot to touch the step. I asked to be allowed to sit for a moment, to catch my breath and rethink the problem. It took them all too much time to understand, this isn’t working, let me go.

I looked around, trying to think of a plan, and not allow myself to become a quivering, humiliated mass of tears. I noticed a line of people behind us and tried not to look at their faces. I noticed a cute girl with pink hair watching, similarly trying to think how to help. And then I noticed Anne Wheaton, one of the cruise’s celebrity guests. You probably would know her best as Wil Wheaton(the kid from Star Trek)’s wife, but she’s a geek in her own right and a fellow believer in the amazing power of googly eyes (for real though, google VandalEyes; the woman is one of my heroes) and was on the cruise doing a reading from her upcoming book. And she was watching me struggle with these ghetto-ass stairs on this unstable-ass boat and these little dudes hurting me while trying to help and I really, truly, just wanted to slip into the water and never come up. But that wasn’t an option.

I had just decided that the easiest thing would be to haul myself on to the boat and crawl over to the bench on my skinned knees like a fucking animal because surely my dignity could only suffer more if I managed to piss myself as well. That’s when the pink haired woman stood up and offered to help, assuring me that she was quite strong. I waved her off once, announcing that it was probably easier if I just crawled, but she repeated her claim of strength and voluntold another man to help her and Puce pick me up. I accepted with as much grace as I could pretend to have. Carrying 230 pounds of dead weight up what are effectively rickety fruit crates and on to a narrow moving boat is not an easy task. I think 8 people at one time were helping me, swiveling me successfully into a bench, and I tried to crawl inside my own skin as everyone else filed on board. Puce was amazingly supportive as always, and silently offered support while we rode back to the ship as I silently prayed for everyone to please forget this whole thing, and did my best to not completely lose my shit until I was alone. The pink haired cutie stayed behind to make sure I was able to get off the tender okay, and of course I could as there were no stairs involved. I thanked her a dozen times, we got back to our cabin, and I cried a lot.

I spent the rest of the cruise fervently pretending that the whole thing hadn’t happened. I had bruises under both my arms, my ego was shattered, but goddammit I had a good time for the rest of the trip pretending I hadn’t made a complete spectacle of myself in front of a boat full of strangers and Anne Wheaton. I mentally chalked it up as a lame-ass claim to fame and joked internally that she’d probably never forget the trip, for damn sure. And managed to forget it, mostly, specially when I got home. I knew I’d probably blog about it, but hopefully in a not-depressing way and try to find some positive angle on the whole ordeal, cause that’s how I fucking roll.

I’m off work for sabbatical now, so I slept late Monday. When I woke up, Puce asked me if I’d been on Facebook yet. That’s…never a good sign. I told him no, mentally wondering who died. He said I should check, and I got nervous and asked what was up. He asked if I wanted to find out myself, or should he tell me, and I didn’t feel like sorting through a time bomb of a timeline, and maybe Facebook’s stupid algorithms wouldn’t even decide to show me what he was talking about at all, anyway. I told him to tell me.

“So…………Will Wheaton’s wife posted to the JoCo Sea Monkey 2017 group about your…incident. It’s very nice, and sweet, and depressing…but she still posted about it, basically to give you support.”

FFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCCCCK.

“Then Beth went and tagged you in comments.”

FFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU

OK. Breathe. It’s cool. No big deal. It’s cool. Public humiliation part two. OH MY GOD THIS IS NEVER GOING TO GO AWAY IS IT. I braced myself for the worst and checked the group. And the post was obvious.

“To the young Sea Monkey who was using a walker on the cruise-”

Wincing, I read her account of the incident, mortified that my emotions were so transparent and I was completely casting a shadow on what should have been an awesome night. I hate that my disease is depressing as hell to everyone around me. I try to keep my shit in check for this reason alone. “What I wanted to do was get up and come over to you to tell you not to feel stupid for your body failing you, but it’s not my place to tell you how to feel,” she wrote.

..Holy fuck, this woman gets it, I thought in surprise. Being told not to feel dumb or weak or sad is never helpful. It makes me angry, if anything. And she understood, and elected not to intrude on my struggle like some Feel Good Fairy Godmother with useless words of non-comfort. I wanted to hug her for that. She continued to tell me that she noticed that not one person behind us waiting to get on the boat was irritated or impatient, just standing by not knowing how to help. And..I was relieved. And instantly didn’t mind at all that she posted this story semi-publicly. Was grateful, even. Because of course my brain told me that everyone was watching, feeling sorry or being mad that I was Officially Ruining Everything. She understood how I felt enough to make a point to tell me this. Which was amazing. She gracefully relieved me of any obligation to respond or identify myself, and concluded:

“Just remember, you are not your body. You are an incredible human being facing a really shitty situation who chose to go on a cruise and live life to the fullest. You are an example of perseverance we should all be so lucky to witness.”

I’m…not entirely sure that’s so, of course. I’m just some dumb girl with a fucking ridiculous disease that ruins everything. I didn’t really decide to go despite my disease. Zoe was gonna be there and thus, so was I. The end. But Anne’s words were amazing and timely as shit and I felt immediately better about the whole thing, and I replied with a simple thanks on the post but sent her a more detailed reply in a Facebook message, including a request to pass my thanks to her pink-haired rescue goddess friend who was indeed super strong. She told me why it hit her so hard, and hoped I’d be back next year. I told her I’d like that, but maybe I’d skip the port of call next time (heh), and asked if I could use her words when I inevitably posted about this whole thing. She said okay and she’d be sure to pass on my regards.

And now I have. So, a super shitty thing happened, but as usual, there was a moment of grace in it that gives the incident some worth. I’m only sorry I didn’t get to hear this from her in person so I could hug her. And then show her the googly eyes on my JoCo badge.

How to Help in Three Easy Steps!

Howdy folks! Brought on by a recent incident, which I will tell you about in another entry, the question was once again asked, both directly of me and in a general forum:

WHAT DO I DO WHEN I SEE A PERSON STRUGGLING WITH THEIR HANDICAP?

Maybe you just saw a blind person attempting to cross the street and having a hard time. Maybe it’s a person in a wheelchair having a rough time pulling something off a store shelf. Maybe you just witnessed me try to get up in to a tiny-ass unstable boat and fail miserably in front of Anne Wheaton in Loreto, Mexico. Whatever the incident, there is someone with some obvious difficulty in life trying to do A Thing and you’re not sure how to proceed. Well, as a public service announcement, I’m here to help.

There are three easy steps*.

1) OFFER YOUR HELP.

Seriously, you’d think this was obvious, but the Bystander Effect is a real thing and you’d be appalled at how often no one says or does anything. Don’t be a grandiose dick about it, just approach the person and offer a specific way you can be of help, or ask if there is something you can do. “Hey, can I grab something off the shelf for you?” “Do you want a hand across the street?” “The boat crew clearly have no fucking idea how to get you off the ground, how can I help get you up?” DO NOT – UNDER ANY CIRCUMSTANCES – ENTER PERSONAL SPACE TO HELP WITHOUT ASKING. Hooooly HELL you would think this is common sense, but I wonder how many blind people have someone just fucking grab their arm and start pulling them across the street. Just ..don’t do this. Don’t start trying to haul me to my feet when I’ve had a fall. I need to muster strength for the attempt, for one, and it’s just incredibly invasive to have a stranger start grabbing at you when you’re already at a very vulnerable moment. Politely announce your presence and ask if you can help. And then…

2) ACCEPT NO FOR AN ANSWER / ASSIST WITHOUT MAKING A BIG FUCKING DEAL ABOUT IT

Sometimes the answer will be “No, thanks.” Accept this and move on. This person’s difficulty is not your Heroic Moment; they are not here to provide you with your Good Deed For the Day. They’re just trying to get some shopping done/cross the street/get on the goddamned boat/live their life like a normal person, and are under no obligation whatsoever to accept your help, even if everyone in the world can see it would be so much easier if they’d just get over it and accept the help. Graciously allow them to decline and move on with your day.

Alternately, if they accept your help, Do the Thing. And give zero fucks about it. Don’t make a big show about helping; just grab the whatever for them, help them across the street like it ain’t no thang, whatever. They will say thanks. Tell them it’s no big deal and believe that it is not. I, for one, would be so much more willing to accept simple assistance from strangers if people were extra chill about it, but usually they act like a big damn hero about the whole thing and I’ve suddenly become someone’s Inspiration Porn and I can already HEAR them telling their spouse when they get home about how they helped a woman in a walker pick up her dropped purse. Just pick up the fucking purse and hand it over and go on with your life. You’re not curing cancer, here, you’re just holding a door for someone who can’t walk.

Whichever option was chosen, the next step is the same….

3) PRETEND THE WHOLE THING NEVER HAPPENED

Most important. THE MOST. If it was a routine thing that you might have done for anyone, like opening a door or helping someone get something from a shelf, then it’s already no big deal and a part of life. Move on. If it’s something like a fall recovery or an unexpectedly needed assist (hello, hands suddenly not working so I can’t swipe my own fucking debit card!), then it’s almost certain that the person in need of help is embarrassed by the unwanted attention already. It’s humiliating to fall on your ass even if there isn’t a disability involved. Whether or not there was a celebrity watching. It’s ALWAYS my most fervent desire that the whole thing would be forgotten immediately. This also ties into the whole “I’m not your good deed” ideal, but primarily? I’m embarrassed to have been caught publicly in a weak moment, whether it can be forgiven due to disease or not. Act natural. Make sure they’re okay, and then forget the whole thing. Please. Don’t make some weak-ass joke, or reassure me that it’s okay and natural, just..pretend it never fucking happened in the first place. Whatever’s whatever, man, no big thing, not even worth mentioning. EVER. AGAIN.

That’s it!

OFFER, ACCEPT/ASSIST, IGNORE.

The only miiiiiiiinor correction to this may be to ignore that I said no thanks and it turns out I DO need some help. Then you may add RESIST, as in RESIST the temptation to say “I told you so” when I accept that I do need assistance after all. I’m still learning my own limitations, and they change every day. be patient with me in this, and I will be patient with you as you learn The Steps. We’ll help each other out, okay?

*Your mileage may vary. Some disabled people are total assholes about this sort of thing. This is just what I think is most useful, for most people.

Dealing with (cat) Shit

I suck at asking for help.

I know, you all are alerting the media right now. OH MY GOD REALLY!? DID YOU ALSO KNOW THAT WATER IS WET? IT IS TRUE!!

I’m getting better at it I swear. I will give the soda bottle one good try and then hand it over to someone for opening. I allowed friends to help with cleaning my apartment. I’ve brought jewelry out to the car on our way somewhere, for J to help me put it on rather than just not wearing it. I trust folks to help me up a curb without feeling like I’m going to pull us both down to the ground. It’s hard, and it’s definitely going to be a continuous work in progress until I no longer have the OPTION but to let people help, but there are definitely areas that I have a harder time with than others.

Like the cat box.

I don’t know why that’s such a trigger. Because it’s gross? Because my cats are not technically part of ME and so admitting I need help caring for them when they are not a medical necessity seems …frivolous? Even though I would literally rather die in a house full of shit than live without them? Because my cat Parmesan is 22 years old and shits wherever he wants and right now my front room is so absolutely goddamned GROSS that I am mortified at the thought of someone else having to deal with it?

But I have to.

I got a notice of inspection when I came home Tuesday; they’re coming in to check the fire alarms. No big deal. But yesterday I had to clean the cat box area, because that’s the first thing you see (and smell) when you come in to my apartment, and it needed doing. I’ve got puppy pads spread out all over my dining area, because Parmesan does what he wants and I can’t stop him and I love him enough that it’s a price I will pay for his company. The carpet is …unhappy with its lot in life, at this point. And that’s a fair part of why I had laminate floors in my house, because once a cat pees on something it is RUINED FOREVER. AND EVER. Cat owners know this. No amount of Nature’s Miracle will ever completely get rid of the smell. And so I just lay out the puppy pads so that hopefully Parm pees on them and then Ianto will NOT try to bury it and drag them all over the place trying to scratch over it, exposing the carpet where Parm will inevitably pee again. J steam cleaned the carpet not long ago, but it needs doing again. Until then, the spotbot and puppy pads will have to do. It’s not easy for me to do this, because I can’t just bend down to pick up the soiled pads, and crouch down to scoop the box. I have to get on the floor, which is less like “getting down on the floor” and more like “a controlled fall”. Then, pulling out the tray from the litter robot (SERIOUSLY BEST THING EVER), replacing the bag, collect all the pads, put out new ones, scoop out the other box, somehow get up off the floor, heft the heavy bag of used litter into the trash can, and then put it outside.

It didn’t used to be a huge production. Twenty minutes, tops.

Last night demonstrated that I can’t do this anymore. I couldn’t carry the water tanks for the spotbot without dropping them. I couldn’t effectively scoop out the boxes. I had the worst time opening and levering a box of cat litter to refresh the boxes. My hands wouldn’t uncurl after grasping the puppy pads. I had to use two hands to spread them out instead of the casual flick it used to take. I almost was unable to get off the floor when I was done, and I was out of breath and dripping sweat.

I can’t do this anymore.

I had a really, really hard time telling myself this last night, as I cleaned myself up and waited to stop sweating. And I don’t know why I’m so stubborn about this, but it seemed like it was the end of all things. I know it’s not. I’ve had friends volunteer, cheerfully, to come over and help with the cat boxes. It just seems like a special brand of failure, to no longer be able to do this. When I adopted my cats, I promised to love them for all time, and to be responsible for their care. I feel like I’m failing them at it. I am losing the ability to give them head skritches, to play with them, and to give them a sanitary place to do their thing. And it’s the worst. I am failing at Cat Mom, and it bothers the fuck out of me.

I’m not dealing gracefully with this at all.

Death Cafe

I have always been a spooky kid. From a young age, I have been fascinated by the aesthetic of death, the graves and skeletons and ghosts, and later Victorian memorial photography and mourning jewelry. I was peripherally aware of death, of course, my whole life. We all are. It wasn’t until Jack Kevorkian came into the American consciousness that I learned that I had Definite Opinions about capital D DEATH as an absolute, as well as an aesthetic. I found that I strongly believe we all ought to have control over our own mortality, and had my first real experience with how afraid society is to discuss the subject at all. Later, when going through the Diagnosis Cha Cha, I experienced my first profound frustration with peoples’ willingness – and even their ABILITY – to discuss it at all.

Today I attended my first Death Cafe.

You can learn about them here: http://deathcafe.com/ It’s essentially a safe space to talk freely and openly about death, and it’s meant to be a really positive experience. I first found out about them through the Order of the Good Death; I’ve fangirled about Caitlyn Doughty and her Ask a Mortician video series before. I finally worked up the nerve to sign up and attend one; my hesitation was not at all about the subject matter, but about, you know…that whole show up and talk to total strangers. This is what I do here, of course, but in a more one-sided capacity. It was a space to get to know other death-curious people, exchange ideas, and finally -FINALLY – be allowed to talk freely about this whole ‘death’ thing.

We had a wonderful facilitator at the table, who was warm, inclusive, and knowledgeable. There was a young woman who had older parents and didn’t know how to talk to them about death, a wonderful older woman who had the same frustrations with being unable to talk to her loved ones about death, and an artist who works with the dying to design their own crematory urns.

FUCKING AWESOME, RIGHT!?!

…Damn right I got her contact info.

We all spoke for about two hours, about everything from death acceptance to memorial services and keepsakes to death-positive media. I learned about POST/POLST forms (a beefed up Advance Directive that is hot pink and you put it on your fridge so the ambulance folk know what you want). I got a very warm and supportive hug. I taught a delightfully sweary old woman the phrase “lalochezia”. I learned about support groups that aren’t support groups at all for the recently bereaved. We talked about how America doesn’t really have its own death rituals as a culture, and so when it comes to death, we are all at a loss as to what to do. I mean, wen someone dies, you show up with a casserole, but then what? We don’t have societal rules and custom for how to treat the dead, besides paying total strangers to come deal with it and sweep the whole thing under a clinical rug. We’ve become divorced from Death, and it is a damn shame.

I will definitely be attending more of these. It was a pleasant afternoon of drinking tea, eating cookies, and having a chat about things you don’t normally get to talk freely about. I highly recommend you seek one out in your neighborhood. The more we talk about this, the more normal it becomes, and the more healthy our attitude towards death as a culture becomes. And this is a good thing. It helps the dying to not feel so alienated. It helps the grieving to not feel so alone. It helps us all to know what to do, how to have these conversations while we still can.

Knowledge is power, indeed, and by talking about death, we destroy some of its mystique and its terror. We make it normal, and we help each other through impending loss – be it even our own departure. I want to be able to have these conversations with my loved ones, but until that becomes normal and okay, I can have these conversations with strangers.

It’s almost as good.

sadbrain

I’ve had depression most of my life. I’m really, really lucky in that it’s a super high functioning depression; most of the time I can still convince myself to Get Shit Done. I know many, many people who aren’t that lucky. Most days, I can get out of bed even though I don’t want to and my brain asks what is the point, even, and my anxiety tells me a million lies a day that I can usually push aside and do things anyway. A lot of folks with depression are like this; we’re not all like the commercials show you.

Some days though.

Some days it really IS like that. The days you call in sick because you literally just….can’t. The days you cry, the whole day, for little or no reason at all. When you spoon food in your mouth and it sits there, unchewed, for like five minutes. The days when your cat looking up at you and meowing (as he has a million times) is suddenly the worst thing ever and you just shake in frustration because you don’t know what to do. About the meowing, about standing in your kitchen, about being alive at all. And then you go to bed and the next day it’s fine, and it’s like you were possessed. If you’re lucky and female, sometimes you realize that the depression is PMS in disguise and somehow just knowing that takes the sting out. It’s temporary. It’s going to be okay, even if you don’t feel like it right now. Which of course is the same thing you tell yourself the OTHER days, too, but with nothing concrete to point at, you never believe yourself.

Depression and terminal diseases are tricky. Because you have a PERFECTLY legitimate reason to be sad, but you know in those slumps that it’s not why you’re crying. When they talk about your meds, and ask how you’re doing, of COURSE you’re low; you have a terminal fucking disease. Separating the mind disease from the physical disease becomes a very demanding and complicated thing, and of course you won’t get it right all the time. You don’t want to bump up the meds and become a zombie if your uptick is just cause you’re quite reasonably sad; it’s only for the sadness you can’t help, the depression that is there for no other reason than your chemistry is off and your brain hates you. The I-have-hella-circumstances depression can be medicated too, but I don’t like the idea of taking something all the time for something that’s legitimately situational and not just chemical. I like having an as-needed med for those times.

Wednesday was one of those times.

I think it was triggered Tuesday night; I found my newt dead in his tank. Now, the newts were always just above furniture, the same as a fishtank; they hated to be looked at, much less TOUCHED. They were low maintenance, you top off the water when it evaporates and toss in a couple of frozen bloodworm cubes once in awhile. I wasn’t particularly emotionally attached to these animals. The cats found them enchanting, I called it Newt TV and it was Molly’s favorite show. I always felt a little guilty for not getting more enjoyment out of them, surely there was some kid out there who would love these neat little pets more than I, but they were perfectly happy being completely ignored. They looked like pissed-off old men, and I named them after the old heckling muppets, and we coexisted. I was upset when Molly somehow pulled the screen off the tank and she either killed one of them outright or put it on the floor and it dried up and died outside of its tank; it seemed like it was an easily preventable death and I should have noticed he was missing from his tank before he had a chance to mummify in my living room. The last newt, I’m pretty sure died of natural causes – there was water in his tank and he’d CERTAINLY gone longer without being fed before – but I failed to notice until he’d had time to partially decompose in there. It was a warm week, probably didn’t take long for that to happen but I was still horrified with myself. Not guilty, he didn’t die because of neglect, just…I should have noticed that a living thing in my care was no longer living before then. I felt shaky and weird, horrified at his little corpse that I just couldn’t bring myself to fish out of the tank just yet, and went to bed after taking an Ativan.

Wednesday was work from home day. My stomach felt…off..so I called off the housecleaner. And then at some point during the day, sadbrain kicked me in the head. Everything was wrong. Work was frustrating and seemed hopeless. I checked Facebook to distract myself, but that turned out to be the absolute WORST thing, because not only were several friends having terrible things happening to them, but the world was full of screenshots of a dead black man bleeding in the street next to his car. And then I lost my shit. And cried and cried. And then went to sleep for a bit, and woke up crying, and everything was the worst. For the rest of the day, I couldn’t stop crying. The slightest thing set it off, and when you have ALS and the slightest things are stupidly difficult already, the world just seemed …too much. I had social obligations that night, and begged off instead, because I didn’t know if I’d ever stop crying. And then I watched television to distract myself, and HOLY SHIT WAS THAT A DUMB THING I DID.

OK. So. Something about me and my broken brain. This sounds stupid, but, welcome to how my personality disorder works. Look up Avoidant Personality DIsorder, and read all about my dumb brain. I have a really hard time watching new shows, because they’re an emotional risk. I just don’t know how they’re going to make me feel, so I have to be REALLY REALLY brave to try something new. I usually have some kind of an “in” – it’s recommended to me by a friend who knows about my broken brain, it’s by a writer whose work I trust, it’s so dang silly it couldn’t possibly be harmful. Otherwise I stick to ‘safe’ shows, like nature specials (Sir David Attenborough is legit one of my favorite people on the planet), cooking shows, How It’s Made.

So I picked this show that had just been added to Netflix:

Dream Knight (드림 나이트)
Alternate titles: 玩偶骑士
Starring Song Ha Yoon and Im Jae Bum (JB)
Though she’s constantly bullied, orphaned high schooler Joo In Hyeong (Song Ha Yoon) refuses to let life get her down and fills her little home with positive vibes from her favorite boy band. But fandom hits the next level when she discovers the ability to call upon four mysterious hotties (played by GOT7), who turn her world topsy-turvy with magical and hilarious antics, including JYP artist cameos. No matter how tough life gets, she’ll get by with a little help from her friends, especially with dreamy knights!

HOW COULD THAT HAVE GONE WRONG. I mean, it even had wacky sound effects and live-action cartoon antics. Only…she lives in a trailer because her mom died suddenly. Ok, I’ve seen anime like that before, that doesn’t HAVE to be depressing; it can lead to wacky misunderstandings involving four boys unsupervised in a single woman’s home. Classic harem anime formula. Four gorgeous guys show up, but they’re really magical dolls born from her tears of despair, here to make everything better! And what she wants most in life right now is to win a dance competition so she can dance with her favorite idol! Only she can’t really dance because she’s clumsy! THIS IS A COOKIE CUTTER FORMULA. Throw in the “oh noes, when her wish comes true the magical dolls will disappear!’ trope that ALWAYS FINDS A SOLUTION (hint: she falls in love and true love’s kiss saves him!) for good measure. Why not. Oh hey, loophole that if they kill her, they can remain human! O NOES (whatever, they totally won’t betray her).

Only..

Only she lives in the trailer because her aunt fucked her out of her mom’s fortune. Only she’s clumsy because she actually has myasthenia gravis! What’s that? OH ONLY A MOTHERFUCKING PARALLEL DISEASE TO ALS THAT CAUSES MUSCLE WEAKNESS AND EVENTUALLY PARALYSIS. No big deal, not fatal, right? Nothing to be upset about as a viewer? Oh, what’s that? Her disease is progressing quickly and she’ll be paralyzed within a year? Is that her and her knight finally falling in love even though the other knights have decided to betray her after all and she doesn’t know about any of this, including the fact that they’re not human? Is that her praying to her dead mother to give her the strength to dance really well, this one last time, with the man she loves? And then afterwards, she is going to break up with him to spare him a lifetime of taking care of a cripple? Oh, is this her winning the competition, everything is happy, wait a minute ARE YOU FUCKING KIDDING ME THEY ACTUALLY DO DISAPPEAR FOREVER AND THAT IS THE END OF YOUR SHOW YOU ASSHOLES.

After triggering a lot of ALS/terminal disease buttons, you’re not even going to give me a happy ending to your stupid boy band television live action cartoon?

ARE YOU FUCKING KIDDING ME.

….so yeah I cried until I nearly threw up, cried until I gave myself a migraine, called in sick the next day and cried that whole day too. Zootopia was released on Netflix, but I knew it was a not-even-bothering-to-veil-this analogy for race, and after sobbing in despair for a couple of hours about race relations ALREADY the previous day, I avoided that trigger. And just avoided the internet best as I could. And slept. And I don’t menstruate anymore so I couldn’t even lie to myself that it was temporary, and I thought about just not showing up to life ever again, and slept some more, and took more ativan in three days than I’ve taken in the last six months. And slept. And Friday came, and I was no longer crying, but so bone-tired that all I could do was sleep some more.

And the tricky part is looking back at that and trying to figure out what was Depression, and what was Disease. My feelings had a reason; their intensity did not, necessarily. Because I need to decipher what the situation really was, what were the triggers, in order that I might avoid them in the future and not lose three days of my life to crying and sleeping the next time. The dead man on my feed, that was obviously a real trigger, and there is most decidedly some very real buildup to that breaking point – you’ve read the news or failed to avoid it as much as I have. I had reason to cry over that. Maybe not so long. Friends’ issues that came up, I don’t know that there would have been tears to go with the empathy otherwise. Not sure. The frustration that my hands cramped up when I tried to eat something, real. Intensity, probably uncalled for. Etcetera. I have to unpack all of these things, examine them carefully, and put up traffic cones around the ones likely to make me slip again. There is certainly an element of the single straw that broke the camel’s back, here; a lot of kinda shitty things have been going on lately, a lot of micro-stresses, and the weight of the major ones combined, and the dam broke. I was way overdue for a cathartic cry. But not so hard, not so long.

ALS has added a layer of difficulty to this process. I can’t just shrug it off and say fuck it, I had a breakdown, maybe it’s time to try a new med. I’m paying much closer attention to all of this, for as much as I could easily play the “I’m Dying” card when I freak out and withdraw, I don’t WANT to unless it’s true. I don’t WANT to give myself permission to ignore causes and allow myself to drown in slumps like this without trying to figure out how to never do that again. My life is too short to allow whole days and weeks to be wasted if I can do something to avoid that. I quite literally…do not have time for this.

And if I’m being honest? Neither do you. Please look after your mental health, babies.