If the cube move happens on schedule, which I doubt, ten more in-office days.
And then two weeks of paid vacation.
And then?
The rest of my abbreviated life, I suppose. The real work begins to find the home I’m going to die in, to make it a place I can live in until that happens, and then finally – FINALLY – my immediate life can be all about just dealing with my symptoms as they come. To deal with my abilities as they go. To actually live the rest of my life until I’ve had enough.
Some not-insignificant part of me is grateful to have an Out of the workforce. It’s a forced retirement, but it’s an escape from the 9-5 capitalist bullshit that has eaten the prime years of my life. The prime of yours, too. I’ve always been a damn Liberal, but more than ever, I am seeing the absolute stupidity of the 40 hour workweek. The need to work, to justify your living with a paycheck.
And it IS a justification.
I’ve seen sneers turn into surprised respect when I tell people what I do for a living. Yeah fucker, this weird-haired, pierced and tattooed bitch has a real life respectable job that requires actual smarts. I earn more money than you, asshole, surprise.
And with the surrender of my employment comes a surrender of that piece of me, that legitimacy in the eyes of strangers that should mean fuck all and yet…it does. It really does. I wish it didn’t. I know it doesn’t mean anything, not really, but our fucking capitalist society has keyed so much of our identities into our paychecks – and who provides that paycheck – that it is going to be really hard to let that go. From being respectable to being a goddamned leech on our social security system even though I HAVE PAID INTO IT MY WHOLE WORKING LIFE, YOU ASSHOLES, I DESERVE THIS BECAUSE I PAID FOR IT AND IT IS MINE. I paid to let your grandma afford her groceries, would have paid more, gladly, as I earned more, to share what I have. That’s what social security is FOR. That’s why we have it. And yet now that it’s time to cash in, even though it will be a very limited time, I feel less than deserving. Am made by much rhetoric and many conservative motherfuckers to feel like I deserve nothing.
Believe me, fuckers, I’d rather be working instead of dying.
One more month of being valid.
Four weeks plus five days plus two weeks vacation.
One more month of being a job instead of a person.
Now that ALS has started to incorporate itself into my subconscious, more and more of my symptoms and new realities have started showing up in my dreams. I can usually still walk. My hands usually still work. ALS isn’t tied into my subconscious self on a permanent basis, yet; it hasn’t become fundamentally part of who I am in my dreams. But occasionally ALS will tiptoe into my dreams and I’ll be in a wheelchair, or I’ll have that dream where you’re trying to run but can’t, but it’s not panic inducing because …of course I can’t.
My current reality with Radicava has apparently assimilated itself into my subconscious as well. In real life, I have a port which is attached to a tube that snakes its way into my arteries. Once a month a nurse comes, and stabs a bent needle through my skin into that port, from which an IV line can be run. We attach medication to that IV line, and thus my infusions are done. Gravity plays a hefty part in this role and the flow can go both ways; we found out the hard way that if there is not medication running into the line, then blood can run out. There has been a couple of times that we’ve been a little delayed in cutting off the flow at the end of the infusion while unhooking the bag, and dark arterial blood starts running up the line. Blood is *supposed* to be able to travel up the line, it’s one of the things they look for when they first access the ports, to know that there is good flow. That’s probably because the first couple of times I’ve accidentally bled into the line he freaked out a little bit. Now we are super casual about it, because it’s honestly no big deal. We just have to push a little saline down the line to get my blood back in my body, and throw that line into the biohazard ban instead of the trash. NBD.
…It is still a little unnerving to know that if I really wasn’t paying attention and things went wrong, when the port is accessed, I could just…bleed out.
I guess my subconscious thought so too. Last night I dreamed that J was helping me with the infusion while we were in some hotel, and somehow the IV bag came off and we didn’t notice. The end of the line just spilled out into nothingness, and I had bled out over a pint before either of us noticed. In my dream J instantly went into panic mode, and started furiously trying to clean up the blood once we clamped off the line, while I assured him that a pint of blood is practically nothing, and people donated this much all the time, and I was fine. I conceded that cleanup was definitely in order, the place looked like a murder scene a little, though. I was more worried about explaining blood stains in the carpet to the people that actually owned the place.
And then the cop showed up.
Suddenly in my dream I’m explaining to a very nervous and suspicious policeman about ALS, and what it is, and what the infusions are all about, and how this was a medical mishap and is not an attempted murder, actually, despite what it looks like, while J is furiously scrubbing blood out of the carpet. I think in the end I convinced the cop that everything was okay, but J was still panicking and worried that he was going to get arrested for trying to murder me.
So yeah, apparently Radicava is normal enough to me now that it’s showing up in my subconscious dreams. That’s a new one.
Holy SHIT people are angry about straws right now.
If you’re lucky enough to be completely ignorant of what I mean, now is a GREAT time to stop reading this entry and move on with other happier aspects of your life. No one would blame you. It would probably even save you some heartburn, because damn, there are a Lot of Opinions on the Internet right now.
Quick backstory: a picture of a turtle which had ingested some plastic straws (do not Google it, it’s super sad) has gotten a lot of people up in arms and clamoring for a worldwide ban on plastic straws. Whole and complete, no exceptions. PLASTIC IS EVIL AND MUST BE ERADICATED. This is a great and noble idea, and I fully support nature conservancy and saving the planet and all of that other awesome stuff. Go Mother Earth.
The problem, of course, is that some people actually fucking NEED plastic straws.
I have read more disability erasure bullshit in the last couple of days than I have read probably in the last year. Actual sample quote: “Why is this even a question? You just pick up the glass and drink from it, how hard is it? No one actually needs a straw ever.”
…Well, Susan, you ableist piece of shit, it actually is NOT that fucking easy. Friends who have been out with me to restaurants recently can attest to this, as they have uncomfortably watched me attempt to drink from a water glass without one. With my current rate of disability, picking up a drinking vessel means clasping it between my two fists (because MY FINGERS ARE USELESS GARBAGE MEAT NOODLES) and taking a sip before placing it back on the table, hopefully without spilling or running into anything. If I can pull it off and get the glass back to the table with a simple clink of glass on ceramic plate, I’ve done well. But that’s becoming impossible. FUN SCIENCE FACT: WATER IS HEAVY.
…I need a goddamn straw.
I currently carry around paper straws, for these instances. They’re still pretty wasteful, but it’s a compromise. Carrying around a reusable one is not practical, because I can’t operate fiddly little brushes or squeegees to clean the thing when I’m done with it, necessitating me to carry a sticky dirty straw in my purse until I can get home and ask someone to run it through a dishwasher for me. In a life already fraught with humiliating reliance on other people’s kindness for the simplest dumb stuff, and existing as an increasing imposition on others, a reusable straw is just one more fucking thing to have to ask people to take care of on my behalf. Paper straws are a concession to my disability and a temporary compromise for conservation.
I actually use a lot of disposable things, and feel ashamed for every fucking one. My liberal snowflake heart cringes every time I do, but using paper plates means I can actually lift the thing without spilling food all over my lap because ceramic is too heavy. Using a paper cup means a condensation-slick glass is not going to fall out of my hands and soak my bed when I try to quench my thirst. My hands don’t work well enough to clean out the cat food tin, so it goes in the trash. Every item disposed of makes me feel incredibly guilty, but these are things I have to do now. I don’t have the privilege of washing dishes anymore, or making my life more difficult in the name of reduce, recycle, reuse. It is an inconvenience to you, and a Major Fucking Undertaking to me. And I know in my heart that this is completely understandable, these are sacrifices ALS has demanded of me, and in the grand scheme of things, the amount of trash I accumulate is really not that big a deal.
Not to hear Susan tell it though. I am single-handedly raping the planet because I need a plastic bendy straw.
There’s an awesome chart going around on the Internet right now, and I’ve had the occasion to share it many, many times over the last few days. I’ll share it here, too, because it’s goddamn useful and I am tired of explaining why Product X is not a universally viable alternative to a disposable bendy plastic drinking straw. Observe:
Useful Chart of Usefulness
Currently, I have the luxury of getting away with paper straws. Keyword here: LUXURY. Soon though, soon that will not be an option. The day is coming when I’m only able to slightly turn my head to the side to get a sip of water. Eventually, not even that. I will not be able to lift my body and position myself above a cup with a straw sticking straight up out of it in order to hydrate myself. I need that stupid little bendy thing, that corrugation that makes it almost impossible to make out of any material but plastic and makes cleaning a major undertaking instead of a quick rinse in soapy water. I need the straw to be positionable, and I don’t have a devoted full-time staff who are able to hold a cup to my lips in order to hydrate myself, or constantly wash my dishes, and all of the other things that you don’t even really think about. Because you’re not disabled and you don’t have to.
But I think about them. Because I have to.
I’m learning new things all the time, myself. Before the above chart, straws as a choking hazard didn’t really even occur to me, but now that I think about it, of course they are. Of course putting a rigid thing between your teeth is an injury hazard when your jaw suffers spasticity and clamps down for no reason. Of course temperature tolerance is going to be a concern, when you are relegated to an all liquid diet and not just sipping cool drinks or refreshments. These seemingly no-brainer ideas are new to me, even.
So I’m simply asking that maybe you pause and think about these things too, before you go off on me and people like me who actually need the fucking things. Understand that the ability to do without straws completely is a luxury. Understand there is no simple answer to the horrible problem of plastic waste. Understand that consumer waste is a tiny fucking fraction of this problem, and huge corporations need to be held much more accountable for their part. As the chart says, the burden of a solution should not rest upon this shoulders of the disabled. We are the victims of this problem, not the fucking perpetrators.
Someone who thought they were being clever asked what people did before the invention of straws then, if they are so necessary? Medical professionals answered bluntly: people aspirated liquids, got pneumonia, and died. Plastic straws are LITERAL FUCKING LIFESAVING MEDICAL DEVICES.
So Susan, I’m extremely happy for you that your reusable plastic cup and rigid ass plastic straw is a viable option. For you. Captain Planet would be really fucking proud of you. Go ahead and wear that gold star. Just please recognize that other people on this planet exist, and that your solutions are not perfect ones. Recognize them for what they are. A good idea. A place to start. The beginning of the necessary conversation.
And understand you’re not taking my plastic bendy straws away from me until I’m dead. You can quite literally have them over my dead body.
Ohh MAN my friends had some salty words about my last post. I love you bitter people. Your Machiavellian minds delight me.
The best suggestion was to go ahead and make reservations somewhere and then just not show up. Instead? I have devised a better, a saltier plan. You guys want guilt? You want to play the emotional blackmail game? FINE.
Here’s the invite to my official retirement party:
I have about 9 weeks of work left (7 weeks of actual work and then 2 weeks vacation). Until that time is over, I can’t exactly be as candid about work as I’d like in certain situations, and be public and honest about all the reasons I’m very, very, very glad to be leaving. Dumbass CEOs firing 10% of the global workforce to please the shareholders, lecturing his employees about business ethics and integrity after getting busted doing insider trading, and THEN getting caught having an affair with an underling aside. (Bye, Felicia)
I can tell you, though, that I’m really, really glad to be leaving my particular job. I’ll miss the idea of work, the regularity, the sense of being needed, and a lot of the coworkers that I’m leaving behind, but I’m very glad that an end is in sight to my working career. Frankly, the job’s become kind of a piece of shit lately and the universe is telling me it’s time to be gone.
Perfect case in point, my manager asked what I would like to do as a goodbye celebration. I told him I wasn’t sure I even wanted to HAVE one, since I’m not exactly leaving for very happy reasons, and I really don’t want to be around a bunch of people crying or looking at me with pity for a couple hours, or talking about literally anything else. Not my idea of a good time. I kind of just… want to sneak out the back. Coworkers that I had personal attachments to had their chance last year to say goodbye at my wake. He said that was fine, but I should know there were lots of people who wanted a chance to say goodbye after almost ten years of working with me, and if I did not want to a going away thing, then that was my choice, but I needed to let him know so that he could inform me coworkers in Arizona that if they want to say goodbye they would have to make their own arrangements.
I flat out told him that was emotional blackmail. But I conceded that a going away thing wasn’t about me at all and I would think about it. He told me to pick a time and a place and let him know when I’d made arrangements.
…
…
…The FUCK I am going to plan my own going away party.
It’s already shitty that for almost the last 10 years, I’ve been performing the team’s emotional labor on my own (practically. James was really good at picking up some of it and made a point of not treating me like a fucking admin, while he was on our team). I am not going to plan, organize, and make reservations for a party – for MYSELF – that I don’t even want. I’ve been sending flowers for every, birth, wedding, and death in my team. I got nothing when my father died. …because I wasn’t there to send *myself* flowers.
It’s definitely time to go. If I weren’t leaving the team, the company, the workforce as a whole, I’d sure as shit be leaving this particular team anyway. Probably the company. We ceased giving a shit about each other a long time ago. That really sucks, because I miss the team we used to be. The team that hung out after work together for Beer Tuesdays and invited me even though I think beer is gross. The team that genuinely gave a shit about each other and had fun even when the work itself sucked so much ass. I miss that camaraderie.
The old team sure as fuck would not have told me to throw my own goddamned retirement party.
