On the virtues of being a data point instead of a statistic.
Author: tragerstreit
This is my site, that you are looking at.
Advance Directives
A PSA:
There will be a video from me, also, probably tomorrow night. I have a followup neuro appointment tomorrow so I’ll have things to report maybe. Definitely have things to talk about.
While you wait, GO CREATE YOUR ADVANCE DIRECTIVE.
ALS:FTS Video Log Update Thingy Numba ONE
Starting a new thing, I hope. Here goes.
Attention Developers!
So, you can now totally play with Stephen Hawking’s voice software:
https://www.nbcnews.com/tech/innovation/you-can-now-use-stephen-hawkings-speech-software-n411706
I really, really hope the world takes this and does amazing things. The best and brightest technology always finds its best use in the hands of public developers, so many amazing things created that were not even THOUGHT of by the device creators. If you couldn’t tell, I’m a huge fan of open source, and I’m an ardent worshipper of public projects. Someone out there has something brilliant to make, someone can take this software and make it do something so far advanced we never even CONSIDERED that it was possible. Someone is going to take this tool kit and make ALS so much easier to deal with we’re going to wonder how we did without it in the first place, and I’m waiting.
Let’s make something cool.
Spoiler Alert: #everyonedies
Today’s post comes with story time!
Story one:
I’m walking with the cane into the cafe. There’s a girl who works there that I smile and say hello to practically every day. She notices the cane, today. I don’t always bring it down when I get a drink, but today I have. I’m a little wobbly, anymore.
“OH no, did you hurt yourself?”
“No,” I shrug, “I have Lou Gehrig’s. I’ve just gotten weak enough finally that I need this a lot.”
“Oh, god, I’m sorry, I’ve heard of that. Is it painful?”
“Oh no, nothing hurts, really, but it’s just a loss of strength over time. I guess that’s a good thing, nothing hurts even if you ARE dying slowly,” I half-joke.
“Well aren’t we all,” she smiles back.
“Truth,” I tell her, and we part ways.
Story Two:
We’re walking to a restaurant, my coworkers and I. We parked kind of far away, and I’m struggling a little with my cane, to keep up with the crowd.
“Keep up,” he jokes, falling behind to walk next to me.
“I’m trying,” I tell him, grinning. “Y’all bastards walk too fast.”
“Well maybe you’re not trying hard enough to keep up,” he teases.
“Yeah sorry, everything’s slow with me. Neurons burning out, walking, you name it. I’m *sorry* I am slowly dying,” I joke.
“Well, everyone’s dying,” he shrugs.
“Some of us just take the fast track,” I tell him.
The Rant
Please, please stop saying “well technically everyone is dying”.
Please.
It’s like when the cashier is ringing up your stuff and something doesn’t scan and you snort, “well I guess it’s free.” It’s a dumb joke, everyone’s made it, she’s heard it a thousand times. And it’s already old and it wasn’t funny in the first place and you’re not that clever, just pay for your shit and leave. And you know it’s a dumb thing to say, but you said it anyway, and will say it again, but everyone politely laughs even though no one thinks it’s clever.
Only, …no. Okay. It’s not really so much like that. It’s..
It’s dismissive as FUCK is what it is. Yeah, okay I get it, everyone is dying slowly. We are all biding time until our own demise. Everyone, eventually dies. MEMENTO MORI.
When you tell me, “yeah well we’re all dying, right?” I know you’re trying to soften the blow. You’re trying to comfort me in a way, to include me with the rest of the human race, telling me that death is normal and it’s okay. To make light of the situation. And I will always, always joke back.
But I don’t want to.
What I WANT to say is “fuck you”. You’re completely dismissing my death. You’re diminishing the sadness of my struggle. You’re telling me that I’m nothing special, that my disease is no big deal. Everyone dies. So what? My disease will kill me but hey, everyone eventually dies anyway so what does it matter? What do YOU matter? What are you whining about? Everyone dies, so what.
So what? Yes, everyone dies. But YOUR book has a billion potential endings. Boating accident! Heart attack! Cancer! Pneumonia! Peacefully in your sleep with your loved one by your side! Gun accident~! You could die of ANYTHING! You could die during sex! You could die from mountain climbing and being exposed to the elements! You could join an international drug cartel and be gunned down on the private air strip in Boca Raton when Louie rats you out! You NEVER should have trusted Louie! You could fall on the sidewalk and hit your head JUST SO and become brain dead until your tearful mother signs the paperwork and they pull your plug. Choose Your Own Adventure Death! If you would like to die of accidental CO2 poisoning, turn to page 56!
My Choose Your Own Adventure book has three possible endings. A long, lingering loss of ability and strength, humiliation, frustration, and fear that ends in…..
OPTION ONE! Sudden accident. I mean, anyone can get hit by a car, randomly, or some freak accident, lightning strike, store robbery gone wrong. Anything could unexpectedly kill me. We’re even on that front.
OPTION TWO! Suffocation! I choke on my own spit, unable to breathe because my muscles have all atrophied and I can’t swallow or take a breath and eventually I choke to death. Drowned in my own spit.
OPTION THREE! Suicide! I decide somewhere along the story that I’ve had JUST ABOUT ENOUGH, thank you, and take some pills if I can still swallow, or push the meds into my guts via feeding tube.
THAT’S IT. Those are my options. Your roadmap to life has a lot of lingering little trails and you never know where they’re going to take you. You might decide to become a mountain climber at 60, you might die tonight, you might waste your life away at some meaningless job until you have a heart attack at your desk. Your maps are open and wide and the ends aren’t known but the possibilities are endless. My map branches three ways, and there are many many stops along the way. Loss of walking. That cuts off a thousand roads. Loss of hand/arm movement. Well there’s a ton of other destinations crossed off my map. Unable to eat. Well that’s a lot of stuff closed off to me, what with the wheelchair and the feeding tube and hell, you need a special van to travel now, you can’t just pick up and go. So my destinations are the trauma ward, a palliative care hospital bed, or a dose of pentobarbital in a place of my choice.
We’re all dying. Some of us have our stories written, and the endings are not happy. There is no happy ending for ALS. And when you compare your unwritten book to my Cliff Notes, it’s insulting.
Your story probably does not have chapters in it about falling for absolutely no reason and getting a really horrible looking scratch out of it but not allowing yourself to show pain because the people you’re with are freaking out that you fell and you have to assure them you’re okay. It probably does not feature you cleaning out a cat box and breaking out in a sweat over that small, stupid effort. It probably does not feature a feeding tube or respirator as a given course. It likely does not have six introspective chapters, each titled some variation of HOLY SHIT I AM GOING TO DIE IN A REALLY FUCKED UP NIGHTMARE WAY AND I KNOW IT’S COMING. Your story might have a little chapter about being embarrassed in front of someone when screwing up something you were trying to say, but I doubt it has six paragraphs afterwards wondering if that was a one time fluke or is it a sign your tongue is starting to atrophy too? Did I enunciate when I was on the call with my manager earlier? Is this guy saying ‘what’ because he didn’t quite catch what I said or because I have lost the ability to speak and he literally has no idea what I just said? Your book has going to work and going shopping, but does it have a pre-chapter about managing a ride that isn’t going to be too hard for you, or not purchasing #thing because you’re not sure you can lift it up in the cupboard where you’d like it to go? Your story’s ending is unwritten. Mine is written in stone, carved by hands that no longer have the power to pick up a chisel.
Telling me “everyone dies” is the same as co-opting #blacklivesmatter into #alllivesematter. You’re technically correct AND YOU ARE COMPLETELY MISSING THE POINT. And diluting the original message with your vapid need to be included. Of COURSE everyone dies. Of COURSE all lives matter. BUT THAT IS NOT WHAT WE ARE TALKING ABOUT RIGHT NOW. You are dismissing the message and selfishly, HORRIBLY, turning the story about you. In telling you that I am dying, I am not saying no one else dies and no one else has to mourn. I am not dismissing the value of your mortality. I’m not denying your story has an end. I’m telling you mine is brief. As someone put it, by saying “save the rainforests” I am not saying “fuck all the other kinds of forests, they’re deserving of destruction”. By saying black lives matter, it’s not to say others DON’T. To say that I’m dying is not to say that you aren’t.
It’s the same, also, as when you tell a friend your woes and s/he says, “That’s okay, I lost my job today.” IT IS NOT OKAY. YOUR PAIN DOES NOT DIMINISH MINE. You have a right to your suffering, and it does not trump or cancel out anyone else’s. People will often try to one-up your sadness, and I’m guilty of doing this too, sometimes, and it’s a horrible, horrible thing to do. I don’t understand what the point of it is. I see your suffering and raise you “my keys got locked in my car”. Your pain doesn’t matter, because I have a completely unrelated circumstance that I somehow have determined is more impactful than yours and therefor I am suffering worse and I WIN at the FML game! And LOSE at Friendship and Human Interactions! And I leave with a parting gift of making your situation worse by dumping all over you when you wanted comfort from me! I’m going to put that statement again in its own line, because it’s important.
YOUR PAIN DOES NOT DIMINISH MINE.
We are all dying. Some of us just know the way. And if you don’t, then I’m happy for you. Seriously. I rejoice with you in not knowing your end. It’s an amazing, free world of possibilities and I’m delighted you get to dance in that sunshine. I will read my own story, and dance as long as I can, while the rain comes, before I’m washed away. Both of our stories are fantastic pieces of literature, but because I got a sneak peak into the last chapter, it doesn’t make my book any less worth reading. Your book’s unknown end chapter doesn’t make your book better than mine, or different. And when I tell you the plot, you don’t have to tell me that EVERYONE’S story finishes. Because of course it does. I was just trying to tell you about mine for a second.
And I joke about it, because it’s a sad thing and I try to keep things light; but I want you to know that it’s crushing when you dismiss me like that. Everyone dies. Yes. This is an unfortunate fact. A fact that does not change that I have a terrible disease and I’d like to be able to talk about it without it being diminished to a non-problem by the words “everyone dies”. You don’t need to one-up this. You don’t WANT to one-up this. It’s okay. Just say ‘sorry’ or shrug and agree, or laugh with me about it, or tell me to man the fuck up, tell me anything but that I am insignificant because of course everyone dies. And none of this matters. Because I fucking matter. If I didn’t, you wouldn’t be wasting your breath to piss me off with those words.
Everyone dies.
Some of us have a story they’d like to tell, before that happens. Not because they think it’s the best book. Not because they don’t think you have one, too. But because they think it’s worth reading. So, thank you for reading mine, so far. I hope it’s been worth it.
Everyone dies, but I guess not everyone gets to blog about it, yeah?
Clinic Day
Sorry it’s been a bit of time; life has been…interesting. Last Monday I had a Clinic Day. My brother Gecko kept me company. It went like this!
Appointment 1 : Respiratory Therapy
I’m grateful that this was the first one. This one sucks the most. It involves inhaling as much as I can, and then blow out hard and fast into a plastic instrument, and then…keep exhaling. It’s like… I don’t even know what it’s like. It sucks. Try it. Inhale as much as you possibly can, plug your nose, and then blow out hard and fast and keep exhaling for like, a count to five. Feel light headed, don’t you? Now do that two more times. While someone is yelling at you to keep going. She gave me a little plastic clamp to go over my nose while I exhaled to make sure that no air escaped that way. “You are Master of the Nose Clip,” she pronounced. I’ll try very hard to live up to the title and not abuse my newly granted power. In the end, she pronounced my breathing was healthy and normal (yay!) and gently admonished me for not doing the breath-stacking every single night. She didn’t seem to care that I wasn’t using the CPAP after I’d moved, but I ought to.
My brother has video of me doing the breathing exercise. I have to be nice to him from now on or he’ll publish it.
Appointment 2 : Speech Therapy
This appointment was to make sure my swallowing and speech was still as normal as I felt it was. She watched me eat a shortbread cookie, and drink a swallow of soda. It’s weird to have someone watch you intently while you eat, and weirder to have them put their hand on your throat to feel you swallow. It’s like..you start to wonder how you normally do it. But I passed her tests and was pronounced normal. Hooray for me.
So the two things that will kill me have not started to happen yet. This is good.
Appointment 3 : Neurology
Dr. Goslin was out, so I saw her colleague instead. She was very nice and knowledgeable. We ran through the normal strength tests, which she pronounced good, but yes, there is weakness in my hands, but the PT person would know better about that. I’d started a conversation with Dr. Goslin to maybe FINALLY work out what’s been causing my daily headaches for the last oh, 25, 30 years and part of my time with Dr. Sax was spent continuing that talk. Dr. Goslin and I had concluded the next step was going to be to try amitryptaline, which is not only can prevent migraines (yay!), but might help with the daily headaches, and also was a mild antidepressant, and ALSO might help me sleep. (sidenote: holy crap has it ever, but that’s another post) We were taking me off of Wellbutrin last time, and we didn’t want to start a new one until I was off of that. So we put that scrip in. I was disappointed I didn’t get to see Dr. Goslin, but she’d been on call all weekend and I totally get the need for a freakin’ day off. She’s got a lot going on. I was also directed to get another blood check to make sure Rilutek isn’t eating my liver (it isn’t).
Appointment 4 : Social Work
Rachelle the Magnificent was my social worker for this appointment, and she had in tow the new director of Assistive Technologies. We had a talk about caretakers and resources, and a lot of other things that gave me much to think about. I fortunately have a lot of time for things, and can coordinate a lot of it myself, but I really do need to have things officially in place sooner than later. We talked about a follow up appointment so she can see my new apartment and see its accessibility. Gecko had some questions of his own answered. Yay!
Appointment 5 : Physical and Occupational Therapy
The two women I worked with in this session were familiar faces, one of them being the PT I was seeing while we were trying to figure out what Godzilla Disease really was. We measured my strength some more, which was predictable results: feet are nearly useless (I can only juuuuuuuuust wiggle my big toe now) and they tend to turn in at the ankles because my tendons are tightening up due to lack of stretching. There’s no muscle there to pull them to stretch. I have a manual stretching exercise that is supposed to help somewhat. Calf strength is going, thighs are still strong. 5s all around on the upper torso, except my left hand. She had me stretch my fingers out and resist while she tried to pinch them together, and they weren’t able to resist much. I still have full range of motion, but there is a measurable loss of strength there – 4 of 5. I am in an every day fight to not let this freak me out. She watched me walk down the hall with my braces on, and with the walker I was borrowing from the ALS loan closet. She agreed I am MUCH more stable with the walker which, on the one hand? No duh. But on the other hand, it’s nice to have it confirmed that I not only FEEL more stable, I AM more stable and less likely to fall.
The occupational therapist measured my grip strength (again, doing something hard while a woman yells at you HARDER! MORE! HARDER! is a surreal experience). She asked about my struggles with daily tasks I’d noticed popping up, and I was making a considered effort to be open and honest and accepting the help she offered. I admitted the toilet in my apartment is CRAZY low (seriously other people have told me so, too) so she offered a toilet frame with bars I can use to haul myself up. I said okay. She offered a shower chair. I said okay. The Zombie Tramp house had a seated shower, so I hadn’t needed such a thing before, but I accepted this for my new place. I don’t need it yet, I can still shower standing, but I lean against the wall when I do. A chair might be easier. She also gave me a couple of pieces of something called Dycem (registered trademark) which is a flexible grippy plastic sheeting that I can cut up and put where ever I need extra grip, like a piece across the back of my phone so I can hold it easier, use a piece to grip jars to twist them open, wrap a glass in it so I don’t drop it, etc. She said once I start using it, I’ll find a million uses for it. She’s probably right.
Appointment 6 : Nurse
The nurse on staff is a lovely woman, I like her a lot. She was basically just there to tell me that if I needed them, they were always around. She gave me the wrap-up paperwork, and said that after the next and last appointment, I was free to go.
Appointment 7 : Registered Dietician
You know how when the dentist asks how often you floss, and you lie, and you both know you’re lying? Yeah I was avoiding that with the dietician, so when she asked how much water I drink a day, I admitted that no, I don’t drink water. At all. I hate the way it tastes (water does TOO have a flavor). I also admitted that I eat like crap and don’t eat breakfast usually, unless you count an energy drink as breakfast, heh heh.
She does not.
There’s not a lot of dietary advice that comes with ALS, because you’re pretty much encouraged to eat whatever you feel like and don’t try to lose weight. She made me promise to swap out ONE soda a day with a glass of water instead. And for heavens’ sake, EAT SOMETHING FOR BREAKFAST. She gave me a cookbook of easy to chew, easy to swallow foods, which she said I do not need to take now, but it has really interesting information about what physically goes on when you swallow, and some other tips in general. So I went ahead and accepted it now, even though I absolutely do not need it yet because my swallowing is fine. It has a recipe for stroganoff in it though, and it made me really want a good beef stroganoff. mmmmm.
And then, after stopping in the lab for the blood test, I was free to go!
Wrap up
No surprises. I’m happy to have it medically documented that my breathing and swallowing are still fine. I’m discouraged about the hand strength loss of course. By ‘discouraged’ I mean ‘freaking out’ but I’m learning to cope. I have a lot of people around to help me out and so far my typing is still awesome. So as long as I can game, we’re good. I’ve since started the amitryptaline, and it is KICKING MY ASS. I have been sleeping SO HARD the last two days, and it’s near impossible to wake up. I hope that evens out. We’ll see. My blood test came back fine, my liver is not imploding. Yay. I have a followup with Dr. Goslin in August, and my next Clinic Day is in November.
So that’s the update!
I guess it does get easier.
Best, easiest breaking of the news so far; ran in to a guy in the cafe who used to be our network guru. He noted the cane I was leaning on.
“What happened, you hurt yourself?”
“Naw, man, Lou Gehrig’s.”
“Oh. …That sucks, I’m sorry.”
“Thanks. I’m alright. How’s the new job?”
“It’s going great! I’m really glad to not be in charge of things anymore.”
And then we dished about network infrastructures and technology and selling houses for ten minutes. And that was all. He asked as we parted if there was anything he could do, I told him I was okay, thanks, but I’d keep him posted. Sometimes the best reaction is just, “Well…shit. Sorry.” and then move on.
Betrayal
I’m not sure it’s possible to put into words how it feels when your own body betrays you. It’s like Lemony Snicket said about the loss of a loved one: “‘If you have ever lost a loved one, then you know exactly how it feels. And if you have not, then you cannot possibly imagine it.” If you’ve had your body just stop working the way it ought, you know how it feels. And if you haven’t? You can’t possibly imagine it. I can’t properly convey the complicated feelings it invokes. But it’s not gonna stop me from trying.
So.
Falling down.
I’m becoming good at it. By which I mean, I haven’t broken anything yet!
They come with no warning. There’s no preparing, there’s no prevention except possibly living in a bubble and/or strapping in to a wheelchair already/never doing anything ever. One leg or another just suddenly says NOPE and then I’m on the ground. It happened today while I was walking to the title office to sign over my house. I was walking slowly, I had my cane, I was watching for uneven sidewalks, but I was just …on the ground suddenly. There is a split second of OH SHIT I AM ABOUT TO FALL and then gravity. There’s nothing you can do about it. I scraped my knee a bit, wrenched my ankle a little because it’s a whiny bitch that can’t do its job right, and roughed up my palm, but it didn’t really hurt. I managed, in my wobbly goose ascent, to mostly land on my butt. There were no witnesses.
The WORST part was trying to get the hell back up. The cane was mostly useless, I need two hands to haul myself up anymore. I gave it a couple tries, like a newborn deer trying its legs out for the first time, but SCREW those little baby deer, man, they got FOUR legs and I only got two that don’t work. I sat/knelt on the sidewalk for a minute, surveying my surroundings, trying to figure out how I was gonna do this. To my left, shrubbery and then a little steel fence. The fence is perfect, but the shrubbery is an obstacle. To my right, freshly watered grass and a tree. I sacrificed my clean pants and opted for the slightly muddy track to the tree. Kneeling in the dirt, I planted my heels against the sidewalk and kinda pushed myself up against the tree. Once I got back to my feet, I was fine.
There wasn’t a lot of angst involved in the process. Just quick thinking and scheming and logistics. The thinking/feeling comes AFTER I’ve solved the immediate problem. And my thought process was almost entirely:
WHAT THE SHITTING FUCK, BODY?! I THOUGHT WE WERE A GODDAMNED TEAM. WHAT IS THIS RANDOMLY DROPPING MY ASS ON TO THE SIDEWALK BULLSHIT?! DO YOU WANT ICE CREAM? ARE YOU BLACKMAILING ME FOR ICE CREAM? WELL GUESS WHAT, SHITHEAD, WE GOTTA WALK TO THE STORE FOR THAT. AND THAT MEANS NOT DROPPING US ON THE SIDEWALK FOR NO FUCKING REASON.
I’m trying, I really am, my body says back. It’s just hard. Everything is so much harder than it used to be.
YEAH OKAY I GIVE YOU THAT I MEAN FUCK WE ARE SWEATING BUCKETS HERE FROM JUST WALKING TWO BLOCKS EVEN IF IT WASN’T ASININELY HOT OUT ALREADY. BUT FUCK, MAN, COULDN’T YOU HAVE DROPPED US SOMEWHERE I COULD GET UP WITHOUT GETTING OUR PANTS MUDDY?
You have as much warning as I do. I’m sorry. The last few weeks have been rough, maybe we could take it easier for a little bit?
WELL SURE I WOULD REALLY LIKE THAT, BUT WE HAVE TO DO THIS ONE THING TODAY. WE HAVE TO DO THIS AND THEN WE WILL BE DONE WITH THE HOUSE WITH THE STAIRS FOREVER.
…Ugh. Stairs. I’m so glad we’re done with those.
WORD. AND ANYWAY DIDN’T WE GET LIKE, ALLLLLL THE SLEEP ON MONDAY?
We did? But I don’t feel rested at all. You’ll have to take that up with Brain.
hey look dudes it’s been a rough coupla weeks a’ight i’m having a hard time dealing with all this at once so maybe just back off okay
WELL NO SHIT IT’S BEEN ROUGH, YOU WON’T SHUT UP. IF YOU’D JUST LET US GET THROUGH THIS STUFF MAYBE WE COULD NOT SUCK SO BAD AT LIFE AND FALL AND SHIT.
Yeah!
hey fuck you body you’re the problem in the first place you know if you weren’t killing us all by deciding to shut down then there would be no stress over house sales and we would not have fallen probably i’m just saying and we could stay in the zombie tramp house cause we like that place but no you can’t even get up the stairs without sweating like a little bitch
SHE HAS A POINT.
Fuck you both, alright? Can we just get to the signing so we can get on with the day?
WELL I DON’T KNOW, BODY. THAT IS KIND OF UP TO YOU.
Oh. Right.
hahah fuck you loser
OKAY LET’S DO THIS, OKAY. AND BODY, MAYBE YOU CAN STOP DUMPING US ON THE SIDEWALKS SO MUCH.
not to be a dick or anything but maybe we should get an actual walker so if this happens again we can get up off the ground easier and maybe it won’t happen so much cause we’ll be more stable and stuff
…YEAH. YOU’RE PROBABLY RIGHT. FUCK. WELL LET’S JUST GET THROUGH THIS SIGNING OKAY AND THEN WE CAN DEAL WITH THAT.
ok man whatever hey body you ready to do this shit
Yeah. Hey, sorry. I mean…I really am trying. But everything’s so much harder, you know? I’m sorry this sucks so bad. I’m trying.
YEAH. I KNOW. I’M SORRY FOR YELLING..I MEAN, I’m sorry for yelling. We’ve been dealt a shit hand and I need to be nicer to you. I’m sorry. We’ll get through this. I know you don’t mean to be unreliable. I mean, you’re what gets bruised and scraped up after all. I just get embarrassed.
and you know uh also reminded that we’re gonna die sooner than later in a pretty shitty way but maybe that’s just me cause i mean a fall is a pretty clear indicator of decline and stuff but hey
Okay yeah, that too, but that comes later. Usually. But of course now that you’ve brought it up. Fuck. Yeah. I guess I am falling more, lately. They’ve already asked if I want a chair but I ..I just don’t think I’m ready for it, I mean I thought I was getting around okay and so far nothing really bad has happened when we fell, besides freaking out bystanders.
…dick move, brain.
just saying
We hate that phrase, brain, and you know it. It makes us sound like a complete tool. You could replace ‘just saying’ with ‘I’m an asshole’ and still convey the exact same message.
Okay, you two. Fuck it. Let’s go sign away our dream house.
Ok. I’ll get us there. Just go slow.
hey though seriously you know we’re gonna be a’ight though, right cause i mean we’re doing good all things considered and we have peeps at our back and it’s gonna be okay
Yeah. I know. This sale happened quickly, for much more than we thought we’d get, we had so so many friends show up to help, and Justin did all the post work so we didn’t have to. Seriously we’re pretty goddamned lucky, all things considered. Let’s go sign some paperwork.
Can we get ice cream afterwards?
fuck yeah ice cream
Hell yes we can. Let’s do this shit.
Moved
Last Saturday, the hottest day of the year so far, I moved from the Zombie Tramp House to my 2 bedroom, 1 bath apartment. The Zombie Halfway House of Ill-Repute.*
I had a whole gaggle of people show up to help. I was as prepared (stuff-wise) as I could possibly be for the event, disease and time permitting. Though still not as prepared as I’d have liked, I’ll grant you. I have a personal pet peeve about showing up to help someone move and they’re not even ready to do this thing. Like…I’ve had to do dishes, then pack the dishes, then move the dishes. YOU KNOW THIS EVENT IS COMING UP. PUT YOUR SHIT IN BOXES. IT MAKES IT EASIER AND HELPS YOUR SHIT NOT TO GET BROKEN. Some last minute things and cleanup is inevitable, but OH MY GOD PEOPLE WHY IS YOUR CLOTHING NOT IN BOXES YET. I try really, really hard to not be that person. So not only was most of my stuff in boxes, it was pushed out in to the hallway when I could, to make maneuvering as quick as possible.
And it worked! The guys (and gal) had everything in the driveway and front room, ready to rock, by the time we got back with the truck. I had a lot of friends work hard in stupid heat, and I was done in record time. I got the truck at 10:30, it was back to the U-Haul before 3. One last round to get the cats and all my groceries, and then I was all moved! With an hour to spare to get ready to go see Eddie Izzard perform (PROTIP: GO SEE EDDIE IZZARD PERFORM. HE IS A MAGICAL HUMAN BEING MADE OF UNICORN RAINBOWS AND SARCASM).
And Sunday, I was alone in my new apartment.
…which was the problem.
I had been frantically preparing for this move for a few weeks. As much to not be that person, as to keep my brain busy. Don’t think about it. Don’t think about the house being sold. Don’t think of your dream home in someone else’s hands. Don’t think about this being the first major loss to ALS. Don’t think about the sheer magnitude of work that’s going to need doing to find the next place. Don’t think about THAT place as temporary, too. Don’t think about this being the last Saturday you will ever sleep in at the house you own. Don’t think about this being the last time you’ll have to clean your kitchen floor. Don’t think about this being the last shower in a house you own. Don’t think about it. Don’t think. Don’t.
Sunday, I crashed. Left to my own devices, and with sweltering heat besides, I slept a lot. I went out for brunch with a friend, with the intention of going out and running errands and buying things that I needed for the new space, but found myself falling asleep at the table when he went to the restroom. He brought me back to the apartment, and I slept some more. I moved some furniture around, hooked up my TV and made my bed, and slept.
I called off work Monday. “I wrecked myself,” I told my coworkers in an email, “clearly I should have chiggity-checked myself.” And then I slept. I woke around 11AM, answered an email from my realtor, rolled over, and slept. 4PM I woke, with the intention of putting my PC together, and stared at my desk for 10 minutes before just sort of…collapsing out of my chair in to a heap on the office floor and lying there for probably twenty minutes, just staring at the wall. I went back to bed. 7PM I woke up, used the bathroom, fed the cats, unpacked my socks and underwear, and went back to bed. I just had no power to do anything else.
I’m not stupid, I know what depression is. And this? This is it. After all of everything, and a REALLY shitty week last week, I finally crashed and depression grabbed me by the jugular and shook hard. And I bled out and slept.
It’s still there, very much, but I managed to get to work today and do some things. My body is so fucking TIRED but my mind is going a million miles a minute. The sale is not quite final, there’s last-minute fuckery going on. I’m not quite out of the house yet, there was still some storage stuff and a couple of fans and cleaning materials, and then I have to clean everything up to make it presentable to its new owners, just as I’d wanted it presented to me but got a filthy house full of broken and useless shit instead. So much unpacking to do before this apartment is even navigable, much less livable. And so much to do after that before it’s mine. I have medical forms to fill out and new bills to pay and addresses to change. This afternoon, sitting at my desk at work, I cried, overwhelmed at how much was left, how much I had to do, and wishing someone would just fucking DO it for me.
I got a voice mail from some inspection company to reschedule an inspection I didn’t even know was happening at my house. That I still own. They’re doing work on the Zombie House to prep it for the final sale, now, and apparently the buying broker doesn’t think it’s necessary to actually let the owner of the house know that strangers are going to be there, working. I chatted up Justin, the Wunderbruder, and asked him when he was free to help me clear out the rest of the stuff at my house, to make the last storage run. He said he’d already moved all the straggler stuff into the garage, and just needed to sweep it out.
I said he was amazing, and he said Nope. Just a crazy white guy.
I told him it sounded like he had it mostly sorted out, and asked if he needed me; he said, “My thought was to bring to your place what goes there, get the storage key and code, stop back by the old house and get the remaining stuff out of the garage.”
And just like that, my brother had already sorted my shit and had a plan and I didn’t have to do ANYTHING.
“That way,” he said, “you can focus your energy on your new place.”
And I fucking cried. Totally lost my shit at my desk in front of my Sea-Monkeys and everything. Because he was an answer to my desperate prayer. I didn’t have to do anything. I didn’t have to ask. And I can’t even tell you how much that allowed me to just…fucking…BREATHE. For a minute. For a couple of minutes.
He has my back. I never doubted this. All of my friends have my back. I have never doubted this either, though this weekend was serious and hardcore proof. But to have him here, to have him step up and just…fuck. Just. Fuck. Without even….fuck. I can’t even tell you. Grateful. SO fucking grateful. He quiets my brain and I know I’m taken care of. And every time I tell him he’s amazing, he says, “Nope.” But he lies. In my darkest moments, I know I can pull through this because of the love of the people surrounding me. I don’t know what I did to deserve this much light, and this much love, and just..fuck. Yeah. So much love. And gratitude. And just…fuck. All of it. Everything.
Sometimes angels are real. Even if they used to punch you in the head when you were kids.
*That’s from a Dresden Dolls lyric. I’m not that clever.
Phrasing
We went to lunch today, my friend and I, and an elderly woman with a cane was leaving the restaurant as we were entering. She saw mine, and good-naturedly welcomed me to the Cane Club. Her companion, an elderly man also with a cane, came through the door as my friend held it for him. “He’s had his for 2 years, I’ve had mine for one.”
“I’m coming on I think nine months,” I told her, smiling.
“I see so many young people with them lately,” she lamented, kindly. “It’s a terrible shame. I really hope you’re done with yours soon.”
“I will be,” I nodded and assured her, “eventually.”
And I walked in to the restaurant, my friend was slightly flummoxed. “That’s uh…a different way to look at it.”
“Was I wrong?” I demanded, laughing. “I didn’t LIE.”
“….No. No you did not,” he conceded.
Sometimes it’s just in how you phrase things.
Taking a Joke
As I wall-surfed* down the hall today, a coworker from another team greeted me, “Howdy, Hopalong, how you doin?”
I laughed and told him I was good, him?
And that was pretty much the end of it, until he came over to my cube, later, bearing chocolate and very contrite. “In retrospect,” he said, “that was an incredibly insensitive thing to say.”
“It was funny, you’re good,” I told him. “But thanks for realizing it COULD have been a dick move.”
There’s a certain comfort in someone casually poking fun of this, I think. It was not disrespectful at all. He and I tease all the time, it was natural and casual and not insulting at all. Taking this stupid disease so seriously gives it more power than it deserves, so it’s nice occasionally to have someone talk like it’s no big deal. There’s a careful line to walk, of course, you don’t want to be all HURR HURR DISABLED PEOPLE AMIRITE!? LOLZ but you also don’t need to tiptoe around it like it’s a demon that will be summoned if you speak its name.
Joking makes it feel normal. And that’s okay.
*I owe this phrase to Rachelle from ALSA, who used it to describe how I walk down the halls with one hand on the wall to steady myself when I don’t have the cane. Wall-surfing. It brought me joy.
Complicated
“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s, and the other was knowing I had Alzheimer’s.” -Terry Pratchett
“Complicated.”
It’s become my go-to phrase when people ask how I’m doing. “Life is complicated.” Check off that box on Facebook, I am officially in a relationship with ALS and It’s Complicated.
Nothing is simple. Everything is terrible, and everything is wonderful. I am cursed and blessed. And everything is complicated. I have, as the late and very great Sir Terry Pratchett said, two diseases. Two minds. The ALS mind and the Knowing I Have ALS Mind. I call them Future and Fatality. They argue constantly over everything I do, every plan I make is scrutinized by both sides, every human interaction is watched with both minds. Future is all about the practicality of the day to day, maintaining a sense of normal through all of this chaos. Fatality is about the hard reality that my time is very much abbreviated and some allowances must be made. Future is the one saying I have to work until I can’t, so as to prolong the quality of my life and finances for as long as possible. Fatality is the one saying FUCK THIS, we are DYING, who the fuck wants to work until all quality of life is gone?! Let’s spend our money making the last days AWESOME. Future says, yeah, but we still have to go to fucking work tomorrow, you moron. Disney World souvenirs don’t buy themselves.
They’re both right.
…It’s complicated.
There is definitely some sense of maintenance of the status quo that’s necessary. Continuing to work not only provides a stronger income than I’ll get on disability, but it’s feeding me a sense of normality, and there’s a great comfort in the routine. I can handle this. Yes. I’m dying. But there’s still work to be done. The floors still need swept, the cats need feeding, and while I’d like to do nothing but sleep, that’s not going to help anything. I can continue because I must, life is moving and so I, too, have to continue to move. Acknowledge that I am not dead yet.
There are definitely concessions that need to be made. Considerations to signing a 30 year mortgage that I know goddamned well I’m not going to see the end of. Allowances to make life fun while I still have the ability to participate. Plans to make so that memories are made and things don’t get left undone. Write your fucking will. Go ahead and spend some money on stupid things because I know in my heart that it doesn’t even matter. Make myself as happy as I can, while I can. Acknowledge that I am not dead yet, but WILL be.
Their key arguing lately has been about living situations. It’s amazing what will trigger me and what won’t, and unfortunately I never know until it happens. I can brace myself for things I think will be problematic, but sometimes they aren’t. Sometimes it’s the stupidest shit that trips me up. And it changes from day to day. Some days I think living with Danielle will be just fine, and some days I think I will do anything within my power to live alone until I absolutely can’t. It’s not about living with her, it’s about living with ANYONE. Some days I accept financial advice with grace, and some days it’s FUCK YOU I KNOW HOW TO SPEND MY FUCKING MONEY LIKE A MOTHERFUCKING ADULT. I HAVE GOTTEN THIS FAR, YOU KNOW. I AM NOT STUPID. Anger comes up unexpectedly, avoidance gets triggered, there are hurt feelings and tears and anger and misunderstandings, and later you sort through it all and you don’t know what happened, even after.
My main babe and I had a huge thing last week. I wouldn’t call it a fight. It was a..surprise boundary test that went very poorly. Plans kind of got put on hold, and I wound up making a rash concession that I had to withdraw and I feel fucking awful about it. Lines were drawn. Many many tears were shed and for a few days there, ativan was popped like candy to try to stave off the panic attacks that just kept coming. It cemented our need for couples counseling. It brought up a lot of good questions. It hurt a lot of feelings. I really, really can’t accept help gracefully and need to work on that. I need to draw lines and feel comfortable, as the center circle, maintaining them. Even if I’m wrong, I’m in charge of my own care. And even if I’m right, other peoples’ opinions are valid. Even if I choose to ignore them in favor of what I want. And a lot of times, I don’t know what the fuck I want.
It was complicated.
We’re still okay, of course, we love each other to pieces and that’s never going to change. It was a surprisingly brutal and hurtful exploration of caregiver/cared-for relationships and I did not like it one bit. And it’s going to continue to happen, and we’re both going to get stronger for it, and it’s going to fucking SUCK while it happens. I hate making her life hard. But I can’t help but do so. Fucking ALS.
I wound up looking for, and finding, an apartment of my own in the interim. My house closes on the 6th of July, but the housing market is extraordinarily chaotic right now, so finding another place to buy is impossible. Especially when I don’t even know what the fuck I’m LOOKING for, and things I am okay with on paper suddenly turn in to panic-inducing dealbreakers. So I am going to live in an apartment, and continue to be alone while I can, and get through life with my best babe and my awesome planets in orbit as best as we can manage. Looking for an apartment is always shitty, and right now rents are INSANE – I wound up accepting an apartment that is 2 bedroom and less than half the size of my house with 6 square feet of patio and a tiny kitchen for $50 less than my goddamned mortgage. And I’m having a really hard time with it. I sit here, typing this, looking out at my amazing back yard that will be someone else’s in a month’s time. I walk the floors I installed myself, I sleep in the room I had not even finished carving out for myself, I sign a lease with all of these rules and regulations that being a homeowner just didn’t have. And it’s hard. I’m glad I found a place and have a place to land, but losing this dream of mine is hard. I’m grateful the work is lessened, happy to have less space to maintain in my lesser state, but goddammit this was MY HOUSE. Future is happy that I’m being so practical about it and is planning the move, and Fatality is punching holes in things when she’s not crying her eyes out.
It’s complicated.
Yesterday we moved all of the extraneous stuff that had been taken down for staging, all of my books and DVDs and winter clothes and decorations and baking gear. We put it in storage. It was a really hot day and we all sweated a lot. The heat kept my mind from wondering if I’ll ever unpack some of these boxes. My ability is waning every day, and the longer I wait to find my proper space, the less power I will have to make it my own. I sacrifice my future nesting to further my independence today. And the weekend was a constant reminder of my lessening ability. My handwriting, as I filled out the lease paperwork, was atrocious. My hands are suffering and I am trying desperately not to just freak the fuck out all day, every day. My stupid feet grew wrong and I’ve got nasty bunions on both my feet, and because of the muscle loss, the bone is barely covered with a little bit of skin and it rubs and pinches and is excruciating no matter what shoes I wear – but the only real fix is surgery, and do I seriously want to give up even MORE mobility to get it corrected? Every movement costs more energy than ever before, and even though I wasn’t allowed to move boxes, I am physically DONE from this weekend. DONE DONE DONE. I am tired and sad and grateful – so fucking grateful – to my friends and brother for coming to my rescue on a miserable day. I put them all through a rough day, and they loved me enough to stay. And though I was grieving, I was grateful.
Future is kind of pissed off that I spent so much money for the lease and renting storage space, because that’s money we could be putting away, and it’s really impractical when I know I’m just going to have to give in eventually anyway. Fatality is flipping her the bird and patting my head and telling me it’s going to be alright even though we both know she’s lying. Usually I side with Future, but right now she can fuck off. I have to leave this house that I love, and it’s cruel that it’s so much work to make that happen. Fatality knows we have people who will help and just chill the fuck out and maybe play some video games tonight instead of worrying about it.
I guess this post kind of wandered all over the place. Sorry. My brain is full, I am mourning my loss of independence even as I struggle stupidly to hang on to a shred of it at great expense, I am obsessing over every detail even as I am actively avoiding thinking about any of it. And hopefully figure out the fine line between standing up for what I want and deciding my own fate, and being a goddamned idiot who needs to admit that she’s not as strong as she wants to be. To learn to accept help gratefully while still asserting control over what help I accept. Stubbornness versus weakness, and strength perceived as stubbornness versus self delusion perceived as assertion. And I usually can’t even tell which is which.
All my life, and now so more than ever, I am very, very complicated.
All is Well
I have things to report and ruminate on and whatnot, but it’s a lot, and I’m still processing. It was a very complicated weekend after a very emotional week (by which I mean panic attacks and crying and fighting and more ativan taken in three days than in the last three months). Things are okay. But they’re hitting hard and fast and yeah. I’ll tell you all about it, in a bit.
But for now? One of my fellow ALS peeps posted this to her Facebook page today and I love it, so I’m sharing it with you.
All is well.
Noise
When I was younger and cooler and far more existentially miserable, I wore soft leather boots and flowing skirts and metal belts with chains and coins and bells that made a lot of noise. Not so many as my friend Bascha – you could hear her coming a mile away. But the chains around my waist and the handcuffs through the epaulets on my jacket and the many metal bracelets around my wrists and the key earring clanging against the rest of the rings told you I was around. I loved the weight around my hips like a hug, the bright glint of the lights catching everywhere. And when I danced, I’m sure they all made a wonderful clatter. I delighted in jogging down the stairs, listening to the pinging and the rattling sounds that I made.
Hi, I’m Strange, listen to my wonderful assortment of spanglery. I don’t actually want to be noticed, so much, I don’t want to have to interact with you, but I want you to be aware that I’m here, with my jangling cacophony of industrial noise. I had my own joyous soundtrack of chains and bits and keys and bells, shaking rhythmically to my own walk. I don’t march to a different beat, I am the drummer*.
I have a new soundtrack now, a more subtle one. I have new shoes and they make a lot of noise, because they’re not broken in yet. Creak-creak-creak of the fake leather. It goes with the skrtch skrtch scrtch of the Velcro on my braces. And the soft click, click, click of the cane. And the near constant ‘ahrm’ clearing of my throat due to whatever medication is causing that. It’s not such a joyful soundtrack, but it is my noise nonetheless. A song of medicine instead of industry.
Necessity drives this noise instead of a penchant for collecting shining metal bits, and the undertone is the same. I don’t want to be gawked at but I want you to be aware that I’m here, please don’t back in to me. This isn’t music I chose, but it’s not a bad one. I’m glad it’s not accentuated by the rustling of adult diapers or the scree scree scree of dragging an IV stand around. And not the vshhh vshhh vshh of assisted breathing. Not yet.
I am not so young. Not so cool. Not nearly so miserable, despite it all, and I wonder what my younger, noisier self would have thought about that. She’d be crushed we can’t dance anymore. She’d be confused why I’m so much more content than she is, all things considered. And I’d show her the support these medical noises bring, and the emotional support the medical need has brought, and I think she’d agree I have it better of the two of us.
It isn’t stopping me from thinking about buying a chain belt, though.
*All credit for that line goes to my dear friend Linnea, who uttered that bit of brilliance as we sat in my room as malcontented freaklet teens. I don’t think she ever knew how much that phrase inspired me and cemented my complete adoration of her.
Tom Waits for No One
A vast number of things have prevented me from completing my voice banking. Changing acoustics in my office due to the move being the primary, but various other things have factored in, like the time my hard drive died and I lost the existing in progress file. I finally had it occur to me that work has phone booths, private little sound-muffled rooms. So I have brought my headset in to work, and finally – FINALLY! – started the process over.
And then this.
Maybe you don’t know Tom Waits, and don’t care. That’s okay! You should go YouTube something of his and then imagine a digital voice like that. I said that I should make a tumblr for Tom Waits poetry inspired by the ModelTalker software prompts. It would be awesome. And then read that poetry with the Tom Waits digital voice, and the world would cease to be, because it’s just too cool for words. And voices.
I might continue to bug you guys with examples of the ModelTalker reading prompts though. They’re delightfully bizarre.
“The wolves surged to meet him.”
“He had rides in the wheelbarrow.”
“The grizzled old fellow could only see on one side.”
Oh, and the original line was “There’s another way you can get a tooth out.”
Genetic Go Ahead
As you may or may not remember, I was formerly denied genetic testing that would show if I had the genetic markers that would show if I’m a good candidate for trials. Since I’m on a different insurance plan, I asked if we could try and get approval again. Cigna said no, maybe Providence would say yes, since their own doctor fought so hard for it last year.
They said yes!
I’m not sure how much my portion of it will cost. I don’t really care, to be honest. I’ll afford it. There is a lot of exciting research being done right now, some promising results, and I’d love to be a data point among them.
I’m looking forward to having more information. To BEING information. I hope the tests allow me to participate. I hope I can be useful.
I hope this diagnosis is good for SOMETHING.
Wakey Wakey
A friend of mine, the one recently diagnosed stage 4, had a Celebration of Life party a couple of weeks ago. It was like a wake, only he was there.
I think that’s the coolest thing ever.
Wakes are always awesome in theory, you don’t mope and mourn, you throw a party! And talk about the good times! Yay! But there’s always a little regret; “Why didn’t I tell them this while they were alive”. And the cheer is forced, a bit. WE ARE TOTALLY HAVING A GOOD TIME BECAUSE THAT IS WHAT HE WANTED EVEN THOUGH I AM LEGIT SAD AND THIS IS SHITTY AND LOOKING AT ALL OF YOU TRYING TO KEEP YOUR SHIT TOGETHER IS MAKING IT WORSE. Or the “HOW CAN YOU BE HAPPY WHEN OUR LOVED ONE IS DEAD” crowd that just sit in the corner and sigh. They’re miserable at other parties, too. But the idea of a wake is excellent. Yes. Talk about the good times. Talk about how this person changed your life. Talk about the stupid way they used to sit in a chair and lean allllll the way back until you swore they would fall but they never did. Until that one time. And remember that laugh? Oh god. We got in SO MUCH TROUBLE that night. And allow yourself to miss them, and be sad, and be okay with it, but celebrate who they were, and be thankful that your paths crossed for awhile.
The idea is rad. So why don’t we do this while people are still alive? Someone is diagnosed with something awful, someone is going through a really shitty experience, something happens that is changing their life forever in a bad way, then help it all by throwing a party for the people that love them, invite them all to come and drink and talk about how amazing this person is.
Chad’s party was a little weird at first, like you’d expect. It’s a wake? But he’s here? Um. Wow. Okay. So we just…um. Wow, I don’t know a lot of these people. But we played a game, and they did a really awesome thing with the game to remember us all by, and it was fun. We got to talk, we got to eat, and it was a really, really fantastic excuse to get people to go out of their way for an evening to come and say hello. And for Chad it was probably awesome to have all the visits done in one shot – I know for me, anyway, coordinating visits with people is tiring, and the visits are exhausting, but you really, really love them so it’s worth it. But it would be fantastic to just show up somewhere for a couple hours and have people able to come over to you instead of scheduling ten million things and cancel some of them at the last minute because there’s no spoons or shit happened, or whatever.
So yes. Do that for your people. Divorce, diagnosis, moving far away, whatever. Uplift and encourage. WHILE THEY ARE AROUND TO APPRECIATE IT. It’s better to say this stuff to them while they’re still alive, still present, still able to have their entire day made by a kind word.
When I was diagnosed, and this amazing community sprang up around me, I listened and read while my friends told each other about how they came to meet me, how important I was, how awesome I am. As expected? Total ego boost. But I learned a lot of things I don’t think I’d ever have known. A friend of mine credited me with getting her into our social scene, because I was the only one of the CreepyKids who came over to say hello, so she was encouraged that we all didn’t hate her and it was okay for her to be among us. Which is weird to me, because I didn’t consider myself really IN that crowd, and it would never have occurred to me that I might ever be a gatekeeper to such a thing. But she said I was, and I did, and she never forgot. And I would never have known that.
I don’t know that I’ll ever have such a party, but of course there will be a wake sort of thing. And while talking to Danielle this morning, we determined there’s going to be party favor bags. With a pair of my socks, some stickers, a tiny Japanese thing, and a container of sprinkles. All things I have too many of. All things I adore. All little pieces of me, who I am, and what I like. I think that’s an awesome idea. Once upon a time I made a Happy Box Exchange, and I made little boxes full of things that made me happy. Music, stickers, little toys, sprinkles, candy, delicious scents. Things like that. I didn’t get all of the participants to respond back in kind, but the ones that did, came in FORCE. A baking care package. Another box in kind of all kinds of music and stickers and things. It was a really uplifting experience. Happy surprises.
So imagine that, only instead of stickers and candy, it’s memories and feelings. That would be the best thing ever.
You should do it.
Controversy and Community
I attended a symposium on ALS research today. As a result, my brain’s kinda full. Full of information, full of renewed energy to be a part of the solution, full of the obligatory introspection.
Oh, introspection. The knee-jerk “how does this all affect me” reaction to Serious Things.
So I apologize if this point is disjointed. My brain is random today and I’d really like to write up a full thing about the symposium and everything involved with it, I know that I probably won’t be arsed to do it. So instead, I’ma just barftype what’s on my mind. You’re warned. Two things come to mind, though, two main ideas that went through my brain repeatedly as I listened to three very, very smart people talk about advocacy, research, and a promising drug therapy, in their turns.
One? Thank god for science. Jeebus Christmastime flapjacks. The third speaker, specially, spoke about laboratory mice and their contributions, and the second spoke about stem cell therapy involving foetal spinal stem cells. Both highly controversial. Live animals, dead babies. Dead *potential* babies, I suppose, depending on your beliefs and politics. I don’t care to get into that. What I DO care about is how fucking USEFUL these research methods are, how sometimes really horrible things produce really amazing and life changing things, and how every day those decisions must be reevaluated. “Sacrifices must be made” is such simplistic bullshit, but I can not fathom how we’d get on without some of the amazing research and therapies and information that comes out of doing things not everyone agrees with.
I firmly believe that even the most staunch OMG DED BABIZ U MURDRER SINETISTS BASTURDS protester, if diagnosed with fast progressing ALS and told “there is promising research that may lead to a halt or reversal in your symptoms” will probably suddenly think that well, okay, maybe just ONE dead baby. That would be okay. One dozen babies in my spine to keep me walking and alive suddenly doesn’t seem so bad, I mean…Just as “NO YOU MUST LIVE WITH WHAT GOD GAVE TO YOU” might think differently about assisted dying. Until you are personally affected, until the decision could conceivably have some import to you personally, your opinion doesn’t carry much weight. You really, really don’t know, CAN’T know, what you really believe until it’s challenged and you face some really fucked up choices. While you’re safe from the consequences of that decision, you probably shouldn’t be allowed to make decisions for people who ARE affected. I’m looking at you, old white guys making reproductive rights decisions for women. And you, PETA person. If your kid had cancer, and I told you that 2000 mice have to die in order to give your kid a chance to live? I bet you’d be suddenly less enamored of mousey rights. Maybe skip the hypotheticals and ask people who actually DEAL with the consequence.
*stepping off the soap box*
Oh, idea one point five – saint preserve us from everyone who has “read an article”. Especially off of the internet. You guys pipe down, too. The three panelists do this for a living. They’ve probably read that article. There’s a reason it’s not called out in the slides.
Point two, and the main one, is amazement at the sense of community with ALS peeps. I have met, and kept in touch with, and care about, people I’d never in my life have met otherwise. I’m antisocial (despite what Danielle says (or at least highly socially avoidant)) and it was a bit weird to come to the symposium today and know some of the people there. Simply because we’ve been similarly touched by a disease. Nothing else in common. Just..yeah, I have this disease too, ain’t it shit? Diagnosis comes with an education, and ALS particularly comes with a community. People I see so infrequently, and yet we have something that connects us on a level that no one else could possibly share.
I learned today that a disease is considered “rare” if less than 200,000 Americans have it. The number thrown around for ALS is usually 30,000, but I also learned today that the ALS registry puts it at more like 12,000. That’s really not many. My employer has 17,000 employees in my area, for example. All Americans with ALS are outnumbered by people working in one metro area for one company. So when you find someone else in your area that even remotely understands, you take note of that person and make an effort to keep them around. There’s nothing like being able to share on a deep and intuitive level what you’re going through. Because even though other people might understand on a theoretical level, it’s a completely different thing to find someone that you can just make eye contact with and say, “Fucking ALS.” and they say “yeah.” and …yeah, to their very SOUL they know exactly what you mean. Because fucking ALS. And because you know how shitty it is, you feel similarly compelled to help someone else in the same position to make their situation suck less. So you stick together, and exchange ideas, and cry for each other, and celebrate the triumphs of perfect strangers with whom you only share one horrible, horrible affliction.
So I guess I have a better understanding of why Harry Potter/Supernatural crossover porn forums exist.
The Best Idea for the Worst Times
I love Emily McDowell’s greeting cards. Snarky, realistic, cheesy, and off the wall without being the office lady who wears all purple and warns the new hires, “You’ll have to watch out for me, I’m a little CRAAAZY!” A birthday card that says “Time to put out this tiny fire while you sing a song!” gets points with me. And a very succinct “Aaaaaahhh! You’re Getting Married!” card. It’s like she’s in my brain creating the cards I would make. I’ve loved them since they came to my attention a year or so back.
They’ve launched a new line of empathy cards. They’re amazing.
Most of them are geared towards cancer, but there are a few that would be just fine for the person in your life with ALS. Put lots of money inside.
I just wanted to point out that these exist, and they make me happy, and that I am so glad to see that there are people out there who get it, making products for those who maybe don’t. Including the simple, “There is no good card for this. I’m so sorry.” It rocks that people in outer circles have options to say when they have no words.
A is for Awareness
May is ALS Awareness Month.
Last year? Boooyyyyy HOWDY was I aware of it. It struck me as poetic timing, the month after my diagnosis was Awareness Month. That’s when I really began to tell people about my own diagnosis, that’s when I made my universe aware that this was happening. I became an expert in describing what it was and why it was bad and why it was going to be okay, really.
It was a harried, confusing time for everyone, and a month of big decisions. I still hadn’t decided to sell my house yet, or wait until my symptoms made it necessary. I decided ultimately to move on the sale, thinking I’d rather have the ability to make the new house mine than stick it out. Which is good, because already it’s impossible to carry things up the stairs with both hands. I ask people to carry things for me, when they can. Even emptying the litter box and taking it downstairs is a trial. So I’m very glad I started when I did.
This May, I’m aware of ALS. I’m aware of the changes it’s made, both in my physical ability, the outlook on certain things, and the way people interact with me. I’m aware of the strength I’ve lost. I’m aware of the independence it’s taking away from me. I’m aware of the sudden burden of time, watching it slip away, wanting to do as much as I can with it while at the same time wanting to do nothing at all and just rest. I’m aware of my friends coming to terms with the disease for themselves, and either stepping up or stepping down. Both are fine. Everyone carries this weight separately, and I’m proud of people for realizing early that this is too much to carry – I’d very much rather them know this now, than force themselves to hold up until they break. And suddenly the support beam below me is gone. It’s better for both of us to realize this now. I’m aware of the amount of freakin’ PAPERWORK involved with dying. The diagnosis should really come with an administrative assistant. Danielle is helping and doing a fantastic job, but it’s not fair for her to have to deal with the bureaucracy AND the emotions.
I’m aware of changes. I’m aware that I don’t have as much time as I’d like to think. 10% of people with ALS live longer than 10 years, and I firmly believe that I will be among them, but I’m no longer so certain that I WANT to be around that long, depending on the decline.
I’m aware, and in awe, of the love and the support that came seemingly out of nowhere. I’ve never in my life been so inspired by the people around me, overwhelmed by the willingness to sacrifice for me, so many questioning voices: “How can I help?”. I’m aware of the amazing group of individuals surrounding me, each with their own talents and lives to live, but somehow willing to reach out and be part of my problem. Willingly burdening themselves with a battle they know is already lost, but wanting to make the loss a little easier.
I’m aware of how amazing my life really is. And I guess, in a fucked up way, I’m thankful for ALS showing me all of this. I’m aware of how bizarre that seems. I mean, I’d still be very very happy if it fucked off forever, but I guess if it’s gonna kill me, the least it could do was show me a little mercy and awesomeness. Most people don’t get to know how much people actually care for them, and what impact people have felt from their existence. I’ve been shown that, and told that. I’ve heard many of the lovely things people say at your funeral, while I’m still alive. And because of that, I’m very aware of the need to show people appreciation and love while you’re still around. How important it is to tell someone without prompt that you adore them and you’re glad they’re a part of your life.
I’m aware of how cheesy that sounds.
Don’t care.
Today, I’m aware that I am a different person than I was a year ago, and will continue to change, but I will cling desperately to my optimism and humor and spit in Death’s face. Well, more of a girlyfight slappy flailing, spitting is gross. Eventually I’ll welcome her, but for now, I’m aware of so much more life that needs to be lived and so many more words to write. I’m aware of how much left there is to live.
Thank you all for being a part of it. I love you. I hope you’re aware of that.