I have a lot to say, but not a lot of it is good, so I tend to not want to talk about it. Some days just suck. I’ve been in a state of..depression is not quite right, more like barely contained terrified panic, since the election. It just keeps getting worse. Thank you, everyone who voted Republican, for voting to repeal the Affordable Care Act, so I’m not entirely certain I’m going to have medical coverage when I’m forced to leave my job, because I have one hell of a pre-existing condition.
I had clinic recently, not much to report. Same decline, my hands are getting worse, swallowing and breathing are still normal.
My 23 year old cat is dying, and I feel like I want to, too, when I think about it. I’ve known him for more than half my life.
Christmas was…good and bad. I’ve had more falls lately.
That’s the baby update. There will be more; I have a lot to say and I promise to say it soon.
It’s uh…been a month. Soz.
I have a lot to say, as usual, but typing is getting hard, and when I get home I usually don’t want to sit in front of the computer at all. I have a lot of things I wanna talk about but yeah, I have a thousand excuses why I haven’t. They all suck – the reasons, hopefully not the things I wanna talk about. In short, it’s like this:
There’s the general health update – the short version is that I have graduated to the walker full time, my hands are decidedly weaker, still no breathing or speaking problems. Headaches are still a thing; got a Cefaly device and it doesn’t seem to be helping. I wanna do a video about the device. It’s weird.
Housing, short version OH MY GOD WHY IS THIS SO HARD. I don’t wanna be adult and do this, I wish someone else was doing this for me, I wish there were even any places AVAILABLE to buy, I wish Portland wasn’t becoming the second Bay Area. It’s complicated and dumb.
I’ve decided to hold a Living Wake for myself in April next year, adjacent to my birthday. The announcement on Facebook concerned some people, because they thought I was throwing a Goodbye Party instead. Naw, dawgs, I just want to see you guys while I can still talk and hug you.
I’m sorting through a lot of emotional shit, as you can imagine, but mostly the idea of BIG CONCEPT vs little concept and how they can screw with you in their own ways. “I’m Going to Die” is a BIG CONCEPT but it isn’t nearly as disruptive day to day as the little concept of “I’m not going to be able to pack my own house when I find a place to move”. Both of them screw with me in their own ways, but the little ones are the ones that usually ruin my day.
I need to check in with y’all about having house cleaners coming over. That’s a bundle of something.
My 22 year old cat was dying, and then he wasn’t, and then he was, and now he can’t figure out what’s going on. It’s been incredibly hard dealing with his impending death, harder I think than dealing with my own in a lot of ways, and I want to talk that out.
Work has been chaotic, lots of organizational changes and looks toward the future. I’d originally thought I might be done working by the end of the year, but now I’m planning on things happening into next spring and beyond, so we’ll see.
I have a lot going on, as you can see, but mostly I just go home after work and watch TV I don’t care about and eat food that’s bad for me and sleep. My time is limited but I’m sleepwalking through it. And I’m…kind of okay with that.
Anyway, love you all, and I hope to post something real soon. <3
Having ALS means that life is uncertain. Nothing is guaranteed. Everything changes at a moments notice.
So when formerly stable influences such as friendships and employment are subject to change and you have no control over that, it can seem as though your already tremulous world may collapse at a moment’s notice. Life is already complicated and uncertain, I get that. But when you have ALS, it adds a whole new level of complication to every little thing. Things you never would have considered to be important are suddenly earth shattering and paramount. Temporary inconveniences become lifestyle choices instead. A simple choice becomes a moral dilemma. Every option carries momentous weight.
Intel made the decision to lay off 12,000 people. 11 percent of its entire workforce worldwide. You can get all of the sordid details online by searching for “Intel layoffs” at the Oregonian site, since they have known FAR MORE about all of this than they ought to, well before Intel’s own employees did. (Seriously, they have the details of the layoff packages and everything, when even I don’t have access to that at Intel’s internal sites). (Whoever’s leaking this info is SO FIRED when they’re caught.) Cullings like this have happened before, several times while I was employed there, and MANY times before. Someone higher up gets a Big Idea and all of the minions below pay the price either in blood sweat and tears or a trip to the unemployment line. Big ideas change the world, it’s true, but to the higher-ups it’s numbers in a spreadsheet, not the people I work with every day. Under this new Big Idea, 11% of Intel’s workforce will be “invited” to pursue other opportunities. Some of that came by way of ISP, which is Involuntary Separation Package, a very pretty phrase for getting fired.
They started Monday and continue the rest of this week. We are all nervous. One of us already got walked, a good friend and someone I would have considered crucial to the team. Because he fit into their formula, arbitrary numbers in the spreadsheet. Not real people. No thoughts to the actual contributions this person provides to the team, the company at large, and the projects we’re working on. Unusually for Intel, the people they are choosing to “let go” are being immediately escorted off the premises. They are not being given a chance to hand off their work or tie up loose ends and in most cases, not even allowed to say goodbye. If I am let go, I will at least take great satisfaction knowing that my sudden absence will cause absolute chaos because most of them don’t even know what I do. It’s like that joke, where the husband comes home and finds his house in complete disarray, the children in the backyard eating mud with no clothes on and crying, every light on, and every door open, food spilling out of the fridge; he finds his wife in their bedroom calmly reading a book. He asks in a panic “What happened?!” And she replies, “Well you know how you asked what it is I do all day? Well, today I didn’t do it.”
But if I am fired, let go, offered an ISP, invited to explore new opportunities, whatever flowery words you wish to put upon it, it’s a world of complication. First of all, I’ve never been fired before from anything ever. THAT would probably be devastating on completely new levels. But having ALS, it’s not as simple as I get fired I find a new job. I’m not ready to leave the workforce. I’m still capable of work. I am also not capable of living off of what disability would pay me. Some days I wake up tired, tired to my core, and I think it would be so nice to just stay in bed and not have to deal with work. Maybe ever again. It is getting harder. For instance, I’m actually dictating this post through speech to text, with a program called Dragon Naturally Speaking, because typing is getting hard. For today I am mostly just playing with the program, but I bought it against a future real need. Some days not having to work is a very attractive idea. But the reality is not so attractive; If I get fired I have to make a difficult decision to look for another job or just accept disability and be done with the workforce forever. Both are momentous decisions, both have incredible complications, and both are hard work in their own ways.
If I decide to be done, then I need to bust ass and move out of this apartment that I can’t afford on what disability pays out. I need to rearrange my entire life and put it somewhere else. I lose the daily routine that sometimes keeps me going when nothing else does, and I lose a sense of purpose. It’s really stupid that a huge chunk of your identity is tied up in what you do for a living. Completely stupid. But it happens to be true. Without a job, you get the unemployed stigma, as if somehow you are less of a person because you’re not earning a paycheck. Regardless of the reason you’re not working; you can be independently wealthy, and if you don’t report somewhere to trade your time for money, your thought of as lazy and somehow less. Worse if you’re claiming disability, because now you are burden on society, leeching money from the government, even though you’ve been paying into that account your entire working life. This is money you put aside against this need, but if you have the audacity to claim it, you’re a bum. I have to accept that identity for myself, while trying to figure out how to live on 60% of my former income. Of course I’ll find some volunteer opportunity to fill my time, I can’t go through the rest of my life just sleeping and playing video games, as attractive as that lifestyle seems. I acknowledge I would eventually go crazy with boredom, because how my brain works. Already I have a stupid sense of guilt when I do nothing but play video games and sleep, as if I’m somehow squandering the time I have left. Though, if I didn’t have ALS, I would still totally be sleeping and playing video games. I would lose touch with society, as twisted a version of society that work provides, it still provides interaction with other people. And as introverted as I am, I do need that occasional touch, the presence of other people even if they piss me off, because at our core, humans are social creatures after all. The workplace provides me a safe measured dose of Other People, and I would miss that if I had no work to report to. I once worked from home for three days and I got stupidly lonely. I can of course just… Go outside. Novel concepts. But ALS makes that this Whole Thing, a huge production, and I’m far less likely to do it if I don’t feel I have to. I would become far more withdrawn and reclusive because I have chance to. I would naturally revert to my withdrawn night owl self ends probably never see my friends. And I would sit in my apartments, or house, or whatever and feel completely useless. Because society has trained us to feel useless if we’re not earning a paycheck.
If I decide to search for another job, then I have to somehow convince someone that I am worthwhile, despite being on limited capacity and limited time. I come with MANY many caveats. Of course they are legally obligated to accommodate me, but if another equally qualified, able-bodied person applies for the job, the choice is an obvious one, discrimination laws be damned. “Hi, I’d like a job. I’m really good with organizing things, I have a wonderful ability to get along with anyone, and I have a sharp work ethic. However, I can’t do anything that requires a lot of walking, or carrying anything, or typing fast, or anything fiddly that requires dexterity and strength really. Oh, and I tire pretty easily, and I have no idea how much longer I’ll be able to work in general. That’s not a problem is it?” Yeah. Tough sell. And on top of that, I have to decide if that effort is even worth it. Knowing full well that my ability will decline and my time is limited, how much am I even going to be willing to pour myself into a new job? Things have been rough on my team for a while now, and I haven’t tried to transfer out anywhere even though I know I could, because it’s just too much effort. What is starting a completely new job even going to BE like? I know I am an awesome employee, and I am totally worthwhile, and I am a kick ass person to have in your corner in any circumstance (my LinkedIn profile even says so), but convincing a potential employer of those facts with all of those caveats seems an insurmountable challenge.
There was a third option that Intel provided, that I actually would’ve liked. Intel is also offering VSP, Voluntary Separation Package, which is where they lay you off if you want to be laid off. Supposedly there is no retribution if you decline the opportunity to be laid off, though I can’t say for certain. The offer you a pretty nice little financial package if you decide to move on, weeks or months of pay and a continuation of health care for a time. It would be the most elegant exit for me, with a chance to tie up everything before I go and be allowed that time to make sure everything is taken care of and none of my coworkers are getting screwed over by my absence. I had already scheduled my sabbatical, which is six weeks of paid break (a really awesome benefit Intel provides, actually), to happen in October. A VSP would allow me to wrap up my affairs, take my paid leave as money instead, and then skate on out with a very nice chunk of money while I figured out my disability and Medicare and all of that stuff. So of course, I was not offered one of those. The timing is wonky, I would have wanted a VSP AFTER my sabbatical. Ideally. But beggars as they say, cannot be choosers.
The firings continue all this week. I’m not safe. Being a woman when diversity is in high demand at Intel offers me some security. But no one is ever properly safe. And I am, after all, a lowly technician. On paper. In reality, I own operation of three labs, in Oregon, Chandler Arizona, and Guadalajara. I am the de facto secretary, purchasing, shipping and receiving, space coordinator, self-appointed Morale Officer, the woman who Gets Stuff Done. None of this is reflected in my title. My little spreadsheet cell just says technician. And despite’s reassurances that my yearly review result of “successful” means I’m doing good, the word successful on your focal is one of the criteria they’re using to let people go. So much for successful actually meaning successful. Barely anyone got a rating above successful because they make managers give “successful” to 80% of their people regardless of whether they deserve a promotion or not. 10% get better marks of Outstanding or Exceeds Requirements, with or without a promotion. Before I got my last manager, before the current one, I had NEVER gotten less than Exceeds. 10% get a “requires improvement”. It’s a stupid bell curve. And even though I took on ownership of two more labs, one of them in another country, and did my manager’s job for half of the year, I was not deemed anything more than “successful”. Even though it was roundly acknowledged that I deserve a promotion, but hey – Successful means you’re doing well, right? The man responsible for taking on our most important project, saw it through challenges and difficulties, sacrificed his personal life, and slogged through weeks of long hours in Mexico to make sure this thing even powered on, was deemed “successful”. It’s beyond ridiculous. This man does amazing work, and on paper, in his little excel spreadsheet cell, he is only successful. Which, Intel apparently translates to mean “meh.”
So you can see why morale is incredibly low right now. And I don’t have particular reason to fight to stay.
Any kind of job change is a shift in lifestyle for anyone. With ALS, the complications are tenfold. I have to think and overthink every little possibility. Losing my job isn’t just a temporary inconvenience, it becomes a major life choice. And with each option comes momentous challenges and opportunities and downfalls. Sacrifices that I’m not sure I’m ready to make. I call myself disabled, usually as a joke, but I realize that’s when you can’t even step over a curb you are in fact, DISABLED. But applying for disability, to accept that label from the government, to permanently brand myself as a non-productive member of society, is a huge and heavy thing. Being disabled is one thing, but being Disabled is another altogether. It’s surrender. But I just don’t know if I have fight left in me to try anything else.
I really hope I don’t have to make that decision yet.
I really hate that any of my coworkers are being forced to face this change, even without all of the additional folderol that ALS brings with it. Losing your job really, really, really sucks. It’s hard, it’s demeaning, and it’s complicated. Especially when you didn’t deserve it, it’s just that some Higher Up made a Decision and you happens to fall within the wrong Excel spreadsheet cell.
And even though I am making contingency plans and backups, I hope I don’t have to make this decision. Not now. Hopefully not ever.
But my life depends on a pivot table somewhere. My livelihood rests on a formula I’ll never get to see.
Life is uncertain enough. With ALS even more so.
This sucks and it’s stupid.
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.
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.
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.
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.
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.
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.
“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
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.
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.
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.
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.
I’m having a bad day.
Some days are fine, some days are normal, and some days it all just fucking gets to me.
I found out today that a dear friend has stage 4 cancer and was given 4 – 8 weeks. Maybe 9 months with chemo. And he and his wife are wonderful, amazing people and they don’t deserve this at all and just, just..
And I offered what assistance I can offer, what I’ve learned about the bureaucracy of dying, and just..fuck, man. It’s been weird and wonderful to watch the sudden outpouring of love on them, see the support network spring up ‘out of nowhere’ that I knew was there all along because I’m on the outside of this. Aching because I know the inside and it’s super shitty and they don’t deserve this. Angry, so fucking ANGRY that this is happening and I am powerless to stop it. And I know that panic, and that scramble, and that wait wait wait while you know time is ticking. I didn’t deserve this. They definitely do not deserve this.
No one does. No one ever deserves to be told they’ll be dead in a year. Or soon. The roadmap to life is complicated and strange, and it’s unexpectedly horrifying to see the end of that journey, and count the mile markers on that road. And sometimes you ride in the car and the scenery is pretty and you space out and things are okay. And sometimes, like today, there are potholes and horrific accidents and you just want to pull the fuck over and breathe for a minute, but you can’t. The car keeps driving. Time keeps ticking.
And so sometimes, like today, you lock yourself in the bathroom at work and cry for a little bit. About your friends, but about you, too. About everything. And then on the way home, you buy all of the junk food and sit in front of your computer and eat everything bad for you and play Skyrim and try to tune it out for awhile. Tomorrow will be better. But today is a bad day.
I think bad days are an evil gift, because they give you permission to fall apart for a while. It’s like a valve release, or some days like a punctured balloon. Permission, a reason, an excuse to just completely lose your shit and release all of the FUCK THIS SHIT IT SUCKS SO BAD FUCK EVERYTHING WHY THE FUCK IS IT HAPPENING THIS IS SO FUCKING UNFAIR and embrace the grief and face it down and acknowledge it, and then put your big girl panties back on and live your life. Tomorrow. Until the next time. And the bad days are cathartic and good, and yeah. Necessary, maybe. But it sucks to be having one, feeling like you’re in a nightmare and it’s going to get so much worse. Knowing I’ll feel better tomorrow does not help me tonight, as I eat birthday cake Oreos and cry in my now-practically empty office in a house I don’t get to stay in while my digital persona steals from random barrels and kills skeevers and dragons. Pretending that the world can stop for a bit, committing yourself to losing a night to escapism because it was a bad day. As though it somehow makes up for it when all it does is cost me more precious time.
Just..bad day. Tomorrow will resume my usual dealing-with-grace and optimism and humor. But tonight it all just sucks so much ass. And while it’s okay, normal, expected to have days like this, it feels unnatural and awful and I don’t like BEING sad and angry and pessimistic. It’s not me. I hate this. I hate being emo, I hate that people I love are going through trauma, I hate that I don’t always have the strength and grace to smile. I hate that I can’t always find humor in the dark. Especially when it’s darkness around people I love. I hate this.
I hate bad days.
Things are coming together. I have a schedule. I should be able to put the house up on the market in about 2 weeks. I have nearly everything upstairs packed up that doesn’t need to go with me to the transition apartment. I have just the kitchen stuff to go through now, and squirrel away what I don’t need. From here, I’ll shift everything into the garage and eventually into storage, and then ‘stage’ my house as best as I can. Primarily this includes turning the ‘den’ back into a den and not an extension of my kitchen, the way it has been.
It’s been…an interesting exercise. To say the least. There’s the melancholy duty of going through my things with a very different moving mindset. You know, typically there’s the “have I used this in the last year? Do I really need this?” sorting, but mine’s had an additional “Am I ever going to use this again, and do I want to keep it anyway for sentimental purposes and have my family have to throw it away later?” There’s a fine walking line between “center circle, bitches! Keep ALL THE THINGS! It’s not my problem to deal with it later, I’ll be DEAD!” and “my death’s hard enough business for them, I should make it easier as much as I can”. I don’t want to sacrifice my current enjoyment of life in the interest of making things easier when I’m gone. But at the expense of a little time now, I can save grief later. It’s a hard business, going through someone’s things when they’re gone. So much crap, so many things important to me that are meaningless to anyone else. Do I let them go now? Or do I keep them, even though I know I’ll never look at them again and in all probability they’ll stay here in this box until someone throws them away.
There’s a sort of freedom that comes with this, too, a relief of obligation. I don’t have to hold on to this anymore. There’s no reason. I can give this up, it’s okay.
But the kitchen.
I had such plans, and dreams, and schemes. A professional workbench, a partitioned off section for chocolatiering, baker’s racks for projects..
and now I can’t. Because I know damned WELL I’m never going to be able to do that stuff. I can still bake, for now, and make candy, but nowhere near on the scale I wanted to. So in going through my kitchen gear, there’s the extra bitter edge to it. “Am I going to use this ever again?” “NO. Because I CAN’T. And that is SUPER SHITTY.” It’s the second major physical concession I’ve had to make, the first being the sale of the house in the first place. But I know there’s no point to outfitting my new kitchen like a professional workspace, because I’ll never be able to use it to its capacity. And that sucks.
It also means I am no longer obligated to bring the cake.
“Oh we don’t need a Safeway cake or anything, Vashti can make one.”
“Um. I’m kinda busy that weekend, though. I’m not sure I’ll have the time.”
“Well, I guess we can just grab one from Costco.”
“FUCK THAT I WILL MAKE YOU A CAKE. Such a cake you will never have SEEN. Because FUCK Costco cake.”
It also means no more random experiments like the Meatcake, at least not as frequently as I did. That might be better for humanity. No one should wield that kind of power.
So this weekend I hope to finish packing up the kitchen unneededs. Over this coming week I’ll finish up my office and everything upstairs. Next weekend staging. And then…put the house on the market and see what happens. I don’t expect to have problems selling. Hopefully I won’t have problems finding a temporary apartment. Or a new home.
Right now, though, I’d like to find a nap.