My First Death Positivity Experience

When I was very young, barely old enough to even know what death was, I saw a show on PBS about the (still very new to the public at the time) AIDS epidemic. I don’t remember anything else about the show, but there was one segment that stuck with me for the rest of my life.

A man, in a hospital gown, sitting in a wheelchair. He was emaciated, very clearly capital-D-Dying. And he made eye contact with the camera, and then sang a very jaunty song about his own, very eminent demise from the disease. I remembered clearly three things: that it was basically about why you should be kind to him as he was going to die soon (particularly a phrase “forgive me when I’m mean”), a quirky little instrumental break during which he tap danced while sitting in his wheelchair, and the chorus phrase “cause I’ve got less time than you”.

And it stayed with me. I was…let’s see when this was released….ooh. I was 13. I remember clearly thinking that the song was funny, and not being sad for him at all, even though I knew he was going to die, and I knew that he knew it, too. The emergent Spooky Kid in me delighted in how morbid the whole thing was, and i loved the twisted sense of humor, but what resonated with me 30 years later was not the morbidity. I actually admired him for knowing that he was going to die, and having made peace with that, he was able to be so forthright with his needs. Since he knew there was literally nothing he could do about it, he decided to have such a wicked sense of humor about the whole thing. It was a quiet, desperate, dare you not to look away from it strength. LOOK AT ME, I AM DYING AND THERE IS NOTHING ANYONE CAN DO. NOW LAUGH WITH ME. He saw his own pending demise, and owned it. I wanted to be like that, too, if I could. Strong, unafraid, and funny.

The image of the tap-dancing dying man never left me, and indeed after my diagnosis, any time I prioritized my own needs over those of someone with a muddier, less terminal future, the chorus would pop into my head. I justified inconveniencing people (whether they actually felt inconvenienced or not was irrelevant to my broken brain) with a jaunty internal chorus of “cause I’ve got less time than you”.

I finally remembered to look for it online, not really expecting to find it. It was (exactly!) 30 years ago, pre-internet, and all I had to go on was “man in wheelchair AIDS song less time than you”. But I did find it. It took some doing to find an actual video (especially one that wasn’t an impossible-to-understand audience recorded live version), but my Google-fu is strong. His name was Rodney Price, and he died two weeks after filming this. He is my role model to aspire to while dying today, and he was my very first Death Positive Hero.

I give you Rodney Price, “Song From An Angel”.

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.

Seriously, why always 3AM?

I’m awake. Why the hell am I awake?
omigod so thirsty
Was dinner that salty, Body?
driiiiink sooooomethiiiiiing
I’m comfortable though, and the only thing I have in here is diet soda which has like, ALL the sodium in it. I’d have to get out of bed and get dressed to get a drink, and that’s not going to be easy to get a glass from the cabinet or anything.
HEY HEY HEY GUESS WHAT
Oh god. Yes, Brain, what.
SOON YOU WON’T BE ABLE TO DO IT AT ALL EVEN IF YOU HAVE WATER RIGHT IN YOUR FRIDGE YOU WON’T BE ABLE TO GET IT WITHOUT HELP.
Really? This is what we’re doing now?
yo i am still thirsty can you maybe angst later ok
I just want to go back to sleep. Can you just deal with being thirsty, body? It’s not like having to pee. We can wait. OK?
i am a parched desert but ok go off i guess
Just gonna lay here and pet my cats and sleep. OK?
DO YOU THINK WHEN WE DIE THE CATS WILL HANG OUT WITH US ONE LAST TIME OR DO YOU THINK THERE WILL BE OTHER PEOPLE IN THE ROOM AND THE CATS WILL RUN AWAY?
MotherFUCKER.
HEY DID YOU SEE THAT VIDEO OF THE CAT REACTING TO ITS DEAD OWNER’S VOICE? IT WAS ON FACEBOOK A LOT TODAY.
No, I did NOT because I knew it would make me cry a lot.
I BET IT WAS REALLY SAD, THOUGH.
I imagine so.
DO YOU THINK YOUR CATS WILL MISS YOU WHEN YOU ARE DEAD?
hey brain like shut up don’t make us cry
Seriously!
crying is really dehydrating
…Seriously??
loss of fluid is really important to me right now ok driiiiiiink soooooomethiiiiing
OK FINE, holy shit, I’m gonna get up and get a cup of water.
ok cool but now that we’re standing up, remember how I said we didn’t need to pee?
….Yes?
i lied and we are gonna
Don’t you DARE.
right now
NO.
we’re doing it
LET ME GET TO THE BATHROO….oh, GODDAMMIT.
YOU KNOW SOMEDAY SOON WE AREN’T GONNA BE ABLE TO CLEAN THAT UP ON OUR OWN AND WE ARE GOING TO HAVE TO MAKE SOMEONE ELSE DO IT.
…Fuck you both.
ACTUALLY WE WON’T EVEN MAKE IT TO STAND UP WE ARE JUST GONNA PEE ALLLLLLLL OVER THE BED AND THEN LIE IN IT.
maybe when they come clean up the pee they can bring some water cause we’re still thirsty
I hate you both so much right now.

A is for ALS

A is for Almost.

Two more days. TWO MORE DAYS. And then I’m done with my working career. Three weeks of vacation as a formality. The rest of my life is a blank book, with ALS having already written in all the margins.

A is for Atrophy.

My muscles continue to waste away as ALS kills the neurons transmitting signals to them. My legs are meat stilts, capable of minor movement only; walking on them is a matter of mechanics and getting my knees to lock properly so I can balance ON them rather than WITH them. My hands are curling up into claws of uselessness. My mouth still works, to the detriment of some, and my brain always will. My body is wasting away into the meat shell it will eventually become.

A is for Avoidance.

Most days I don’t really think about it all, except as an abstract idea. Sure, I’m going to die. I have that roadmap. In my day-to-day life, though, the Big-M-Mortality idea makes way for the general practices of getting through life. ALS intrudes in all things, of course; drinking a soda is now a two-hand operation and I can never even pretend that my life is normal again. All of that, though, is background radiation anymore. It’s amazing what can become normal, given time.

A is for Abbreviated.

My life has a shortened length. For some ALS folks, this throws them into a fervor of living as much life as possible in the time they had left. I didn’t go that route. I’m far too pragmatic to have abandoned my job and traveled the world while I still could. I focused my efforts on making my future life more comfortable, and that meant working as long as I could. If we had universal healthcare I wouldn’t have had to worry about it so much.

A is for Adjustments.

The disease progresses, and whatever I could do a month ago, I can’t necessarily do today. Life is a constant series of micro-adjustments and new behaviors, new rules and limitations. I learn of these new limitations, often the hard way, and another compromise with life is created. The new normal evolves.

A is for Afraid.

Just cause I’ve accepted death, doesn’t mean I’m ready. I’m terrified of what this disease will continue to do to me, and what it’s going to cost my loved ones. What it’s already cost them. I hate that I’m so reliant on everyone around me, and it’s going to get so much worse.

A is for Advance Directive.

Seriously, you have to have one. Fill it out today. If I have one positive impact on your life, let it be that I inspired/coerced you to do this one thing. It’s a hard thing to think about, I know, but your family needs to know what you want. They can’t know unless you tell them.

A is for Assisted Suicide.

I don’t know for sure that I’m going to go out this way. But I’m grateful every fucking day that I have this option.

A is for Anger.

I don’t think I’ve ever questioned “why me” so much as outright stated, “It is pretty fucked up that this is happening to me.” No one deserves ALS. (There are a few people I would like to have it temporarily though. It’s a short, sharp lesson in humility and reliance on others.) I’m angry that this disease exists at all. That we know next to nothing about it. It’s brutal and unfair.

A is for Allies.

It’s absolutely true that you don’t know who your friends really are until disaster strikes. I’m grateful in a perverse way for this disease, for showing me what grace actually looks like. I knew my friends were awesome before. I didn’t quite understand the enormity of that power they have. I do now; I am witness to it every day.

A is for Alive.

For now. I continue to breathe, and so I will continue to write and think and feel and rant and swear. And as long as I am alive, I can bear witness to the ravages and the comedy and the love and the struggle and the disaster my life has become. Al of it, often at once. And so long as I have the best medical care team on my side (I do!), the support and love of friends (check!), and a sense of humor about it all (absofuckinglutely), I’ll be okay. Even when I’m really not okay. And when I die, you will know that it was all okay, too. Somehow. Someday. You’re going to be okay.

A is for Acceptance.

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.

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.

Keep Your Mouth Shut, Or Just Say You’re Sorry

We’ve forgotten how to die. We’ve forgotten how to be dying, and how to comfort. How to be okay when things are definitely Not OK.

We’ve lost the ability to not be absolute shitheads to each other by accident or ignorance when something terrible happens.

In my adventures with dying, I’ve accumulated quite a wealth of pretty words and useful words on the subject of death, dying, and grief. I’ve always meant to catalog and share them. When a friend who’d lost their mother was told today that she’s going to hell because she refuses to just leave her grief up to God and put on a happy face, I kiiiiiinda lost my shit. And knew the time to publish this is NOW.

So here it is, A Grief Primer.

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.

Inappropriate Friends are the Best Friends – Part 6

My cats knocked my depression meds into their water dish and I was completely unable to do anything about it, because it’s a heavy ceramic fountain. So not ONLY did they ruin half my monthly supply, they poisoned their water. Assholes. Insult to injury, it was the day after my friend Lizzie had come over and thoroughly cleaned the fountain out while she was helping me with cleaning the apartment (we love Lizzie a lot). She expressed dismay that she’d JUST cleaned the damn thing out, and I told her that it was okay, I’d strongarm J into helping me.

She replied in an email, “If you had strong arms, you wouldn’t have to ask J!”

And I laughed a lot.

She had replied in email instead of comment, because she wasn’t sure it was too far. It wasn’t. Gallows humor keeps me able to deal with this, and I realize that sometimes even my own jokes are ‘too far’ for some people – like recently when someone asked me how my new tattoo’s white ink was going to fade, and I told them I’d be dead before I had to worry about it.

Some day, someone will say something that goes too far. probably. Maybe. I dunno. I’m pretty fucking dark. It’s beyond gallows humor…guillotine humor? Firing squad humor? Saying it out loud a lot of times as a joke makes it easier to take it seriously. The concept of your own mortality is a bitter pill to swallow, so I need to wash it down with humor.

At least for as long as I’m able to swallow.

Can-tastic!

Ok, so this isn’t one of those “little things have big impacts” kind of stories, though it sort of is. It’s a “help from unexpected sources” story more than that. In a really stupid goofy way. Some background:

1) My friend Nathan bought me a subscription to LootCrate. I’ve raved about that before, but let me do it again. We weren’t ever really the best of friends or anything, just work friends, and we lost contact for a few years. Like ya do. When he found out about my diagnosis, he bought me this subscription so I could have something fun to look forward to every month. It was an unexpected surprise and I can’t even remotely convey how much joy this brings me, for a lot of reasons.

2) LootCrate is a collection of VERY geeky things, from all kinds of fandoms. I’ve gotten t-shirts from Teenage Mutant Ninja Turtles to Overwatch to James Bond and everything in between. It’s current pop culture and retro childhood stuff, and I’ve gotten a lot of really awesome swag, including stuff you literally can not get anywhere else. Tetris fridge magnets. A Tron pencil bag that glows in the dark. SO MANY TOYS. And awesome aforementioned t-shirts. Like, half of the t-shirts I wear are now LootCrate shirts.

So this month’s crate theme was “animation”. It included swag from a couple of things I’m not that into (it happens, but I ALWAYS find someone who really loves said fandom and is happy to take things off my hands), and drink koozies from the show Futurama. Full disclosure? I’ve always kinda hated drink koozies. They strike me as a bit white trashy and that’s not helped by them USUALLY being branded with some stupid or plain offensive not-really-a-joke. But I loved Futurama, and this was a fun thing, and I’m ALWAYS drinking soda (Sorry Kelly, I know I need to be drinking water but CHERRY COKE ZERO IS DELICIOUS), so I slid my can into one.

Oh my god guys.

THE CAN IS SO MUCH EASIER TO PICK UP.

I typically have to use two hands to pick up a full can of soda, and as I drink it, I press a dent into the can to help me grip it. Hang on..lemme take a picture.

Every can I drink from has that little divot for my thumb. heh. But with the drink koozie, I don’t need it! It’s squishy so I can get a good grip on the thing without leaving a little dent in. I bet Nathan never knew he was signing me on for handicap aids. But that’s what I got this month, and I never would have figured this out on my own.

So that’s a happy thing that happened.

A New Awkward

This morning, while being wheeled into work (because J is a freaking rockstar of awesome), we met up with a former coworker of ours. This woman is French, and has a super thick accent, and is very sweet. She hadn’t seen me for quite a while, and the walker was new to her.

“Good morneeng, Vashtee, are you okay? Deed you hurt yourself?”

“Oh! Hi! How are you?”

“I am good, but zees walkair, are you okay?”

“Oh. Uh.” I looked at J, who was no help. He was busy trying to get my wheels over the building’s threshold, something we struggle with every morning. “Not…really? I..have ALS.”

Blank look.

“Lou Gehrig’s?”

“I have not haird of zees ALS, what ees eet? Are you going to be ok?”

“It’s…” Ugh. What do I tell her? I’m gonna die, sorry we haven’t seen each other in awhile?
She misinterprets my struggle as reluctance. “Eet’s okay, you don’t ‘ave to talk about eet, eef you don’t want to.”

“Oh, no, no.” I settle for, “It’s a degenerative disease, I’m losing my ability to walk.”

Even that slice of information makes her sad. And it’s awkward. A new kind of awkward, a language barrier, subtleties of tone and subtext kind of awkward. Usually if someone doesn’t recognize the names of my disease, I can say, ‘neurodegenerative’ and they infer the ‘terminal’ part by tone and expression. And then we move on. But she doesn’t understand, and I don’t want to be so crass as to just cheerfully say “I’m dying” as I do with folks I know better, but there aren’t better and simpler words that are gentle. So I leave it there.

Delivering news of a terminal diagnosis is hard. I have complete empathy for doctors, this has to be the shittiest part of their job. But when the diagnosis is yours, and that relative/friend of the patient is a dear friend/relative of yours, not just some professional duty, it’s harder. It’s a strange and terrible combination of delivering devastating news and divulging a horrible secret. And watching the parade of emotions cross your faces, the ‘holy shit this is awful but this is HER dying so I can’t be selfish and grieve on my own behalf I have to be strong for her and not let it phase me but holy GOD, man I can’t believe she is DYING but she’s standing there looking like she’s sorry for ME..’ That part doesn’t get less awkward.

The worst time was when I told Danielle. She started crying, and when I reached over to comfort her, she brushed me off, dismissing her tears with a headshake and “It’s not about you.” I still don’t know what the hell that was supposed to mean. But I never asked.

Delivering the news hasn’t gotten easier. I’ve gotten better vocabulary, gotten a smoother delivery, but telling someone who has English as a secondary language was an all new difficulty level for me. It was an interesting experience.

A new level of awkward.

Celebratory

In two days, I will be completely surrounded by my loved ones.

In what my favorite (non-related to me, ahem) child Emi has dubbed my “Awake Wake”, people from literally across the United States are gathering for a celebration. For me. I am throwing what I hope to be a grand party, to see all of my oldest and dearest friends and my newer beloveds, before this disease takes my ability to speak, to embrace them. To throw one grand shindig and see everyone I love. A funeral in which the deceased has not quite shuffled off this mortal coil.

I blatantly stole the idea from my friends Chad and Dawni. You should blatantly steal this idea too.

In four days, I turn 42.

Each birthday is precious, regardless of your circumstances. Each of mine is especially dear to me, because I don’t know how many more I’m going to be able to celebrate by eating delicious food with friends. Sushi becomes less special when the only way you can ingest it is through a tube, you know? Each day matters. I’ve been laid up with a mild to moderate ligament tear/sprain, and I feel the loss of each mobility day more keenly than I otherwise would. My days on my feet are already limited, and I feel them slipping away. Worst timing ever; my friends are already arriving, and I want to see them as much as possible, I want to show them around this amazing city I live in, want to tell them absolutely everything I never had the nerve to, before. I’ll be celebrating my birthday by going to Clinic, but hopefully that evening we’ll do something fun and delicious.

I’m excited to see everyone. Nervous, because for some of them it’s been just about 20 years. I’m the fattest I’ve ever been; under doctor’s orders, but still my vanity aches a little that after all this time, they’re seeing me like THIS. But it’s important to me that they see me like THIS, and not an emaciated meatbot, unable to do anything but meet their eyes and drool as they talk to me. For now, I can still exchange horrible jokes, still hug like a bear, still tell my friends how much I love them, how each of them shaped who I am. How I am so much better for knowing every single one of them.

Because I am, without doubt, better for knowing every. Single. One.

My life has been stupid charmed by the amount of amazing people in it. And I am grateful than when I said, I’m throwing a party – please come? They are coming. From far and wide. To say hello and goodbye and I love you and maybe play with some stickers and eat some cupcakes. Crying will come later, but for now there are memories to exchange and stories to tell and so much laughter.

I can’t wait.

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.

Sometimes It Goes Right.

I want to tell you a happy story, but it involves a little bit of angst, but first there is a happy thing, and it has a happy ending, okay?

OK. I thiiiiiink I’ve told you about this before, but shortly after I was diagnosed, my friend Nate gifted me with a subscription to Loot Crate. It’s a monthly subscription box full of geeky fun things, and it’s a delight to receive every month. I ADORE surprises in the mail, and it’s been a bright spot once a month, and Nate is an amazing person for doing this for me. I always love seeing what awesome things they’ve come up with. Sometimes it comes with a shirt, I once got a glow in the dark Tron pencil case (cough cough makeup bag), a plushie facehugger from Alien, a kickass bank in the shape of Hellboy’s fist, the list goes on.

There’s a point to this beside Nathan is OSSEM and I love geek things, I swear.

I was so enamored of the stuff, that when Loot Crate upped their game and offered a wearables-only subscription, I was all over it. A shirt and TWO! TWO PAIRS! of socks every month (OH MY GOD I LOVE SOME SOCKS YOU GUYS) (no really you have no idea) (seriously two drawers overflowing) and it was a done freaking deal. This month I got a pair of Nightmare Before Christmas socks (squee!), a pair of Walkign Dead socks with weapons screenprinted all over them (hee hee hee) and a baseball jersey style shirt emblazoned with the logo for Weland Yutani, the company from the Alien movies. It’s RAD.

I went to see Dylan Moran on Sunday – he’s an Irish comedian who’s been in a lot of things I love (Shaun of the Dead, Black Books), and I decided to wear the jersey. And here is where things get sad. Apparently I was having a really low mana day, I don’t know why, but when I let go of the walker to climb in to the car, I fell. Not a dramatic OHMYGODWEAREGOINGDOWN but just a ‘welp, gravity is a true theory and we all must obey’ kind of slide to the ground. The corner of the car door caught me under my arm and I grasped at it to avoid going down hard, and I heard this awful rip. It was almost comical for a minute; I knew I had to let go of the door, because I couldn’t recover from the fall, but I could hear the ripping get worse and I was inwardly cringing.

Puce was a freaking champion of champions, he was by my side in a flash and had lifted me to my feet before I quite knew what was happening. He hugged me tight and said it was okay, we were still going to go out and have the BEST NIGHT EVER, and helped me back into my apartment so I could change my shirt. I hadn’t even had the effing thing on for an HOUR. I did a pretty good job of not losing my shit. He said maybe Loot Crate would replace it. I said I hoped, but didn’t think so, because it’s not like it’s Loot Crate’s fault I have ALS and fell and ripped my shirt.

I sent them an email that night anyway. Maybe I could buy a new one? They sometimes sell their crates, later, but even though I didn’t need a whole new set, maybe they had a spare shirt I could pay for. It was worth a shot. I sent them this email and photo:

SUBJECT: A Tale of Woe-land Yutani

TL:DR at the bottom. <3 Ok so I had tickets tonight to see Dylan Moran (he's awesome, go see his show if you can), and busted out my brand new Weyland Yutani shirt for its inaugural outing. I headed out to the car, and..well ok, I have ALS (Lou Gehrig's Disease) and my legs don't work well anymore, and as I was getting in to the vehicle they said EFF YOU and I fell. I flailed around for something to catch myself on, and instead the car door caught the shirt as I went down and it ripped. Really badly. Luckily it kiiiinda slowed my fall so I wasn't hurt, yay~! But my brand new jersey I hadn't even had on for an HOUR is now ruined. TL:DR; is there a way I can buy a replacement JUST for the shirt and not have to hope you guys sell this crate later? Even if you can't, thanks for being awesome. -Vashti

let 'er rrrrrrrrrrrrrrrrrrrrrrrrrrrip

The next day I got a reply:

Hi Vashti!

I’m sorry to hear of your woes! As a one-time courtesy for being a loyal Looter and providing a photo of not only the torn shirt but including your kitty as well, I will get a replacement out to you. Due to inventory changes at our warehouse, we ask that you allow up to 10 days for your replacement to ship. Once it has been processed, you will receive an email with new tracking information.

We would like to apologize again for the late delivery of this item. Thank you for your patience and understanding!
Thanks!

Keith ^_^ – Team Marvel
Loot Crate Help Center – https://lootcrate.zendesk.com/hc/en-us

LOOT CRATE IS AMAZING. Keith is amazing. I am not sure what Team Marvel is, but it would not surprise me if the Loot Crate offices are divided West-Side-Story-Style into Team Marvel and Team DC and instead of fighting in alleys they play with action figures and make “pchew pchew pchew” noises at each other over their cube walls (“Cyclops got you with his eye beam!” “NUH-UH, Wonder Woman deflects it with her bracers!” “Her bracers would not be able to deflect his eye beams unless they were made of ruby quartz!” “SHUT UP NO ONE EVEN LIKES CYCLOPS HE IS LAME.” “YOUR MOM is lame!” “Craig do we have to go to HR again?” “….No. But Batman would kick Cyclops’ ass any day. He is like the Aquaman of the X-Men.” “GODDAMMIT CRAIG THAT IS IT.”), and have heated arguments in IRC over who is better, Deadpool or Lobo.

……I digress. But! Thanks to Keith, and apparently to Parmesan being a butt and refusing to let me take a picture without him walking all over everything IN THE WORLD, I have a new shirt coming. SO that is excellent. ALS can’t ruin everything when there are awesome people in the world like Nathan and Keith. My world is an awesome place with fabulous people in it.

…Deadpool would totally kick Lobo’s ass, btw. This is a fact.

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.

FORTIFY

on top of gravity:
I asked one of my (male) friends to stop using the phrase “man up” and he has been using “fortify” for the past two weeks instead and it’s just a little thing but honestly it makes a difference
and tbh it’s also pretty funny when I start to deflate in the library and he leans over and goes “FORTIFY”

Seriously try that. J and I use it now and it’s awesome. Sometimes when I’m whining, even though he knows I have every right to (CENTER CIRCLE, BITCHES), he will just grin and shrug and say, “Fortify.” And I will flip him off the best I can, and we laugh and go about our lives.

There will be a real post soon – I know I keep telling you this. But Monday is Clinic Day so there will be lots to report on that front. Meantime I thought I’d check in with just a quick thing about the weekend.

It wasn’t particularly kind, if I’m being honest, but there were moments of goodness interspersed, for certain. I mean, it started with a road trip to Olympia to see a black metal show. How is that not awesome? I’m not generally in to black metal, but Wolves in the Throne Room are an exception. They’re not so much Black Metal as…Black Folk? It’s more melodic than the usual stuff, and they have been properly described as “atmospheric black metal”. None of the cheesy SATAN666OMG stuff. I like it. It was two and a half hours away, on a school night, and the venue was this ADORABLE little place that served surprisingly delicious food and had the cutest waitstaff OMG and delightful bathroom graffiti (next to the signs that declared said bathrooms to be transgender friendly, use whatever restroom coordinates with your identity, and if someone gives you a problem, please report their asses and they will fix it). The music of course, was WAY too loud for the small room, and the geniuses decided that a smoke machine was a good idea so I spent some time breathing through my shirt, and then some jackass decided that you know what this concert needs? For me to blaze up in this tiny room.

So yeah I had a headache.

The show was awesome though, a dear friend in Seattle had joined us, and the opening act was every cheesy stereotype I could hope it to be, including announcing themselves in a Cookie Monster voice “WE ARE BLACK! FUCKING! CANCERRRRRRRRRRRRRRRRR!” And yet, the whole time I was listening, I was so tired I felt like I could fall asleep any minute. Even with Cookie Monster screaming about forests or satan or whatever. I don’t know what the hell that band was about. We got home around 4, because the show was an hour late to open, and had 3 bands, and was two and a half hours from home. I had wisely taken the next day off. I slept until like..3, and then took a nap, and then went to bed early. Working all day and then car ride and then socials and everything was way too much and I was DONE for the whole day.

Saturday I FINALLY got my Fallout 4 install working. I’d had to reinstall my operating system, so everything is cattywampus still, and I hadn’t played in forever because getting everything how I like it was just too daunting most of the time. So I finally got all my add-ins working, got it set up for use in the bedroom so I can lounge and play, annnnnnnnnnnnnnnnnnd…..discovered my hands don’t work well enough to play on the wireless keyboard anymore. My left ring finger seriously droops, and that’s the finger that controls moving LEFT, soooo….unplayable. I tried for a little bit and gave up. I’m going to have to get a controller. Which SUCKS because I am totally a mouse/keyboard gamer.

Sunday I had a friend come over to help me around the apartment. AGAIN – people just…show up! And do cool things! And the hardest part is always just LETTING them help. I’m so grateful I can never even HOPE to say how much. While I was shifting some things around for her arrival, I had a fall. Not a bad one at all, just…wound up on my butt. I got up with little difficulty and went about my day. I continued to think about it, but it didn’t really upset me or hurt me. Just, whoops, on the floor. Get up, move on.

That evening we went to dinner with Gecko for his birthday, and we did Brazil Grill. If you’re not familiar with the place, you sit at a table, and they bring huge hunks of meat around on swords. And they carve you some, and you eat meat until you DIE. And then they bring you cinnamon sugar glazed pineapple and you know you’re in Heaven. I love this place. Only trouble is, when they carve off that beautiful slice of tri-tip, you have to grab it with your tongs and take it to your plate. I had to use my tongs with my whole fist, and still didn’t quite manage to grab it a couple of times. The delightful gaucho (dude with the meat sword) apologized every time, but it was clearly ME dropping it, not him cutting, and I wanted to tell him “It’s not you, my hands just don’t work” but I didn’t. I wound up putting my freakin’ boob in my plate once, reaching over to try and grab the slice properly. And then cutting up the meat was its own challenge, and trying to be discreet when my hands inevitably cramped up with the effort was useless because 1) I have to do a prayer gesture with my hands to get it to stop, and 2) my brother is observant AF. But it wasn’t a huge deal, just a quiet “hand cramping?” “Yah.” and that was the end. I realize next time, I’m going to have to ask someone to grab the slices for me. And probably cut my steak.

Four slaps in the face from ALS this weekend. The exhaustion, the loss of playing video games with mouse and keyboard, the fall, knowing I’m gonna have to have my steak cut for me like a toddler from now on….and yet.

And yet.

Not once did I lose my shit, or even feel like I was going to. Or needed to. Just a quiet acceptance. The exhaustion was to be expected, and things like this are just going to require a full day recovery anymore. That’s how it is. Gaming, well, I knew that it was coming, and I’ve been keenly aware that my ring finger in particular is very weak, so it makes sense that I can’t really do it anymore. The fall, well, they’re going to happen. Until I am no longer able to get up out of a chair, and even then, I’m going to get dropped. Being unable to cut my own food in the future, well, I’m honestly glad I’m still even able to EAT steak. And I have people willing to cut it for me. Gecko and his husband would have done it in a flash, had I asked. And next time, I will.

ALS still sucks. But I’m getting better at coping with the losses, to foresee them happening and bracing myself.

To fortify.

And that’s pretty awesome.