First Time For Everything: Dropping

Also this weekend! And something I wanted to mark down, and something I should be keeping track of, and so you get this little nubbin post.

Saturday was the first time I dropped something. I was washing a plate in the sink, and I dropped it, and it chipped against a stoneware bowl. I remarkably did NOT lose my shit! Just, “well fuck, I can’t replace this plate, they don’t make them anymore. I guess this goes with the chipped bowl from the same set, now.” Disappointed. Upset. But shit held together.

It’s not the last thing I will drop. It won’t be the last thing I break when my hands prove unable to handle the weight. Maybe if something shatters spectacularly, something I love, that will be the time I lose it. Instead, I turned the plate over, found the chip of crockery in the sink, and sighed. Time to get lighter plates.

Password what?

Yyyyyyyyeah so that last post is locked down because it’s not really appropriate for the public.

I was/am very, very angry about A Thing, and wrote about it. I am angry about Some Things in general, and I also wrote about those because they’re related.

Those will probably get their own post because they’re not specific. The Thing was very specific and angry and name-cally and not really something I should put up here. But I WANT it here, because writing it made me feel a lot better, and I want to remember every piece of this. It borders on libel so it’s private, but it’s a piece of the map. I poured my anger into a post that belongs here, but there are definitely some things I probably shouldn’t say out loud. Which SUCKS! I’m DYING! I should be allowed to say WHATEVER I WANT!

But I realize I can’t. So when I’m gone, that post will be unlocked. <3 Just wanted you to know whyfor that last thing.

Legal

Man, real life is just NOT going to give me a break lately! Sorry! But it’s also awesome that I’m still able to DO so much and keep up with what I’m being asked to do. So I will take this all optimistically.

Anyway. The lawyer.

First of all, we used the Crowdrise funds to pay for it, which I felt weird about, but that’s precisely what that fund is for. So it was $650 NOT out of my pocket. Yay! Thank you everyone who donated to that. I love you. For reals. I’ve put off this legal appointment for a long time because I simply couldn’t afford it.

We were recommended to use a particular elder care lawyer, who had a lot of dealings with ALS patients. For lack of knowing what the hell we were doing anyway, we went with him. He had the stereotypical swanky corner office with floor to ceiling windows, nice couches. I was completely intimidated, I won’t lie. Everything about the place said “You can’t afford this.”

We explained what my situation was. Dying of ALS, need to get my affairs in order. We explained what we wanted. Answers on particular laws and financial advice. I’d filled out a questionnaire (why does that word have two Ns? Millionaire doesn’t. Weird.) that detailed my pathetic assets. Which basically amounted to the life insurance policy through my employer and a little bit of 401k, and my house. Which I still owe almost everything on because I’ve only lived there a year.

(Goddammit. One fucking year. FUCK!)

I told him I was planning to sell the house and buy something single-story. He looked at me like I was on drugs and told me he would absolutely not advise buying another house. I’m not going to get any financial benefit out of it, he told me. It’s going to be nothing but a money sink. Consider renting. There are laws that say landlords HAVE to let you remodel to be ADA compliant. There’s subsidized disabled housing, too, but the wait list is like 2 years and I’m not even actually disabled yet so I can’t even START that process. So why he brought it up I don’t know.

Danielle (my bestie and primary caregiver to be) and Gecko (my brother and finance manager when I die) were with me, and both had a lot of very good questions. Danielle asked about Medicare and Medicaid, what they would cover, how would we/what will be appropriate procedures to move me to assisted care living, ten fifteen twenty years down the road when I need it?

He looked genuinely surprised. “Ten years? Did the doctor give you that long?”

Um. “I have an extremely slow progression,” I told him. “Two years since I noticed a problem and I’m still walking.”

“OH. Oh okay. Okay. Buying another house is NOT so far fetched,” he told me. “Usually when people come to me, they have a small handful of years left. Three maybe. Buying a house you’re only going to have for three years is not advised, but you’ll get benefit out of it if you live there for ten.”

We talked about in-home care vs assisted living. How much worth you have and how much you have to use up before Medicaid kicks in. Living on SSI and how much money you get to keep (hint: HARDLY ANYTHING). In assisted living? It was like $20. That’s all you get. They take care of your housing and food and medical care, sure, but entertainment? Clothes? Toiletries? if you have a cat? You’d better figure it out because $20 is all you get. If you live at home you get to keep more of it, but of course you have to deal with mortgage and bills and food on your own. It’s REALLY not a lot.

So, hope you’re independently wealthy! Cause otherwise your life is going to be small and hollow. Sorry your disease sucks, but let’s make it worse by bogging you down with money woes and bureaucracy and complicated decisions! What can you afford? Nothing! A small bed in the corner of a nursing home somewhere where we’ll tuck you away there until you die.

We talked about executors of estate, who I want to have as my finance controller, who I want to be in charge of medical decisions. He gathered information and after the appointment he mailed me papers to certify all of that. He told me to get my living will in order and spread copies of that to everyone. He also said we need to draw up my will to state who gets what portion of what assets I’ll have, and I can attach a sheet later dividing up physical goods.

I kind of froze. Who gets what? I don’t fucking know. I threw out some percentiles, and Danielle insisted she did not need to be figured in there anywhere but if anyone deserves ANYTHING when I die then holy fucking SHIT is it Danielle. My brother Justin a close second. Gecko third, for being willing to deal with all my debts and shit when I’m dead.

Though I DID find out that when I die, Gecko will NOT be responsible for dealing with my debts. With very small exceptions (that I do not have), those debts get written off when I die. “I’m not suggesting you go run up your credit cards,” he cautioned with a shrug. “But.”

When we left, my brain was full of doom and money and gloom and responsibility and numbers, so many fucking numbers. What’s fair. What’s right. What’s necessary. Next steps. Long term, but not long long term because you never know. I was keenly aware of my situation. How little resources I have. How much money it’s going to take to keep me alive. How little time I have to save any of it.

I was completely overwhelmed, and really wishing I drank at all.

It’s a fucking complicated thing, dying. And it seriously is unfair that this diagnosis does not come with a lawyer, an administrative assistant, and a kitten.

Yep….

..Still liking the Ice Bucket Challenge videos, haters.

Suck it.

I’ve been SERIOUSLY overwhelmed at the amount of friends of mine who’ve done one and given me a shout-out. And most of them mention the Walk team.

OH MY GOD THE WALK TEAM.

SO GUYS. GUYS.

Okay. When I signed up for the Walk to Defeat ALS, I didn’t expect much, really. I thought a few friends of mine would join me, maybe kick in a few bucks. When you set up your account, they suggest you shoot for a target of $210. I knocked that down to $100, figuring it would be far more realistic. And instead of the automatic team goal of $2k, I knocked it down to 1. This was a lofty, pie-in-the-sky ideal though, I never expected to actually reach it. I’d have been happy with reaching $300 across my whole team of maybe 8 individuals.

I have 26 people in my posse. And we’ve raised $5 short of *three thousand freakin’ dollars*.

ZOMG.

As I said in the last post, there are dark days. But they are so few and far between, and a lot – A LOT – of that is because of these things. I am CONSTANTLY shown that there are people who love me, people who are willing to help, people who want to support me somehow. It’s amazing, and I am humbled, and so so fucking grateful. More than I could POSSIBLY hope to convey.

I have a posse. And they have my back.

And so I can live on.

Happy.

ICE BUKKIT LOLZ

I’ve been getting OH SO MANY links to videos of people doing the “ALS Ice Bucket Challenge”. And just as many questions about how do I feel about this?

…That’s complicated.

If you’re somehow unaware of this whole thing, the ORIGINAL idea was put forth by a guy – NOT PETE FRATES, he did NOT start this, okay? – who challenged a friend to *EITHER* donate $100 to ALS research *OR* dump a bucket of ice water on his head. Once you do it, you call out three friends to do the same.

And it’s the EITHER/OR part that gives me mixed feelings.

People have missed the original intent. It’s gone beyond – with people just…dumping a bucket of ice water on themselves. Proudly showing the world that they *won’t* donate to ALS research, I guess? In fact they would literally rather pour ice water over their heads than give money to a charity. According to the original rules.

The most amazing star power has taken this up, and I really really really hope they’ve missed the point and are doing BOTH ice dump AND donate, because if Martha fucking Stewart won’t even slide ALS research a Benjamin? Seriously fucked up. But for the most part, it’s just become this machismo WOOOO ICE BUCKET YAY LOOKIT ME egofest. I’m really happy that nearly all of the celebrities I’ve seen do this make a point of calling it the ALS Ice Bucket Challenge and asked people to donate money to the ALS Association.

..except Steve Gleason. Fuck that guy. His “No White Flags” charity is a good one, but in his challenge video he’s co-opted it for his own fucking charity instead of the actual ALS Association, WHICH IS WHERE THE MONEY BELONGS. NO WHITE FLAGS, NO THUNDER STEALING, ASSHOLES.

The Ice Bucket Challenge has gathered a LOT of hate, too. “This is so fucking stupid. How does dumping ice on your head cure ALS? ”

Uh. It doesn’t. Which, No shit? No one really thinks brainfreeze will magically fix a terminal disease.

Is this promoting awareness that ALS even exists?

YES.

Holy SHIT yes. It’s completely unlike all of those stupid goddamned breast cancer awareness games on Facebook (“post the size of your shoe with a frowny face! teehee! Don’t tell anyone what it means!” HOW THE ACTUAL FUCK IS IT PROMOTING AWARENESS IF YOU ARE ACTIVELY REFUSING TO EXPLAIN WHAT YOU ARE DOING, YOU DUMB BITCHES) – promoting ‘awareness’ to something I’m pretty goddamned sure people are already aware of. Seriously. WHO HAS NOT SEEN THE MOTHERFUCKING PINK RIBBONS BEFORE. YES WE KNOW ABOUT BREAST CANCER K THX. (BTW SUSAN G. KOMEN IS A COMPLETE BULLSHIT CHARITY PLEASE STOP GIVING THEM MONEY, YOUR PRECIOUS PINK RIBBONS AREN’T HELPING DO SHIT. (Seriously Google that shit. They are terrible and have terrible policies. Don’t give your money to a ‘nonprofit’ that pays its CEO more than the motherfucking President of the United States.) )

Unlike breast cancer, ALS NEEDS an awareness campaign. I’ve often bemoaned the fact that NO ONE KNOWS WHAT THE FUCK ALS EVEN IS. Including ME before I was diagnosed. This is how it went when I told people before:

“I have ALS.”

*blank look*

*sigh* “…Lou Gehrig’s Disease?”

(half the time another blank look, but sometimes:) “I’ve…heard of that? I think? Is that bad?”

“It’s going to kill me slowly by turning me into a meat shell and then suffocating me, so yeah, it’s pretty bad.”

And now thanks to this whole ridiculous thing, I’m finding the conversation going like this:

“I have ALS.”

“Oh, shit, I’ve heard of that, that ice bucket challenge is going around. That’s pretty fucking serious, isn’t it? I’m sorry!”

It’s still not common to find someone who knows exactly what it is, but it’s a pretty good goddamned start. ALS doesn’t have a sexy celebrity spokesperson or a beloved childhood actor suffering from it, there’s no “star power” to my disease. The best we have is Stephen Hawking, and half the time people don’t even know who HE is, even after you say, “The scientist guy? In a wheelchair and talks with a robot voice? *sigh* He was on an episode of South Park?” And because human beings are FUCKING TERRIBLE ANIMALS, without ‘star power’, no one gives a shit.

Even though people have completely missed the point (except for example Jimmy Fallon, I fucking love his challenge video), it’s still getting word out that ALS is a thing. A thing that deserves attention and money and time. And thanks to this stupid meme, the ALS Association has seen a DRAMATIC upswing in donations. There’s been SUCH an upswing in donations lately, SO many people hitting the ALS wiki, that it’s goddamned inspiring.

And I just can’t hate that.

Phlebotomy, Phleboteyou

I just got this delightful spammy comment!

Don’t skip courses ith attendance policies hich are not necssary.

My treatments started immediately with phlebotomies on a weekly basis
for about 6 months then became bi-weekly for a few months
then monthly for awhile. If you are studying for your national certification examination,
there are many resources readily available that are designed to much
better get ready you for the substance on the examination.

Phlebotomies on a weekly basis sounds rough! Though, for awhile it felt like I was doing that. I was a reverse vampire! An amazing amount of people have taken blood from me. I think they’re storing it for future armies of Vashti clones; we will fight them with sarcasm and stickers! BEHOLD MY LOVE OF CATS, IT IS OVERWHELMING AND POWERFUL. PEW PEW PEW!! NOW FALL DOWN. No, over there. Further. I’ll bring you guys cookies later. Stay down. Chocolate chip? no? Macaroons! Good choice, Future Enemies. They are a favorite of mine, too.

Uh…what was my point. I don’t think I actually had one. The spammer’s username linked to a hair loss clinic in the UK. I’ve actually got very little natural hair on my head, it’s mostly extensions; they might be on to something. I..should probably post about that some time. I’ve had it in the back of my head to vlog eventually, and I thought that’d be the first topic, vanity. But I’m far too self-conscious to record myself while there are other people in the house. How vain of me, right? (BWHA-HA! See, how I am the master of the callback. COMEDY.) But there are several things on my mind regarding that topic, and I should probably get them out here.

Maybe after I’m done playing whack-a-mole with the spammy comments. They seem to be active today!

Cosmically Unfair

Terminal diagnoses should come with a complimentary administrative assistant and a lawyer.

It’s not fair that you have to suddenly deal with the whole “you’re going to die, and here’s how” idea, but there’s SO MUCH PAPERWORK. Bills to pay. Forms to file. People to inform. Insurance to adjust. Huge, heavy decisions to make and then notifying all the people involved. There’s so much BUSINESS to dying, or preparing to. Shit that really, everyone should be cognizant of anyway, but you never really bother to think about it properly until it’s too late, and then your relatives have to deal with it when you’re dead. But because I have warning, and because I want to make this as easy as possible for those I love, I’m trying to take care of as much of this as I can. And quickly, so I can put it aside and not have to think about the end of my life every minute of every day anymore and just get back to living while I can.

..And a kitten. Terminal diagnoses should come with a free kitten. Yeah.

Home Owned

For the longest time, I never thought I’d want to own a house. It seemed like a lot of work, and a lot of money, for little reward. I got married, and the idea of owning a house didn’t seem so bad, but still way more work and money than I ever wanted to put in to it. The marriage ended, and I had a three bedroom rental house to myself, and..I liked it. I could put whatever I wanted, wherever I wanted. I could cut out the place and make it my own.

Almost.

I could paint, sure, but..it still belonged to someone else, and the yard was the size of a postage stamp. I wanted a garden. Fruit trees. A yard I could sit in the shade in, and read books. Build a catio, hang out with my cats while I tended the garden. Suddenly I could see myself owning my own house. So I did some math, and some future projecting, and I applied for preapproval, and got accepted. So suddenly I was house hunting. That took FOREVER. And when I finally found the house I wanted, the house I could see myself living in for the foreseeable future, it turned into a short-sale fiasco that took six months of babysitting for signatures and phone calls and a lot of work from the most excellent real estate broker in Portland. (Seriously, if you live here and are in the market, hit me up for her contact info. I love her. She’ll do amazing things for you.)

But finally, finally finally the house was mine. I took possession of it in June of last year. It is, of course, a traditional two story house. Because I don’t like ranch style houses.

I’d only been noticing a problem for about 7 months by then, and they were so, so minor. A little hitch in my walk by the time I got the keys. Certainly nothing to freak out about. I’d started the gamut of doctor appointments maybe two weeks before I got the keys, and over the course of the initial appointments, when I found out that it might be a hip problem needing surgery, I made mental plans of setting up a futon downstairs while I recovered from surgery, but went ahead with all of the flooring and painting that needed doing. And time went by, and I worked on the house, and the limp got a bit worse, and it went from me not having a problem at all with stairs to me using the hand rail more often than not to now, where I need the hand rail to go up and can not carry anything down the stairs requiring two hands.

So now, here I am, in a house I fought for, that I can’t stay in. The layout of it is such that it is ENTIRELY unpractical to think I can still live here when it becomes necessary to use a wheelchair. Even with a stair lift, the doorways are too narrow and everything – my office, the library, my bedroom – is upstairs and there’s no practical place to have a bedroom downstairs. And no way at all to modify the half-bath into a full with a roll-in shower, certainly.

I’m going to have to sell this house. There’s absolutely no question.

The question I’m dealing with now, though, is this: Do I sell and just rent a place for as long as I can live alone? Or do I sell it and buy a single story, smaller house? And if I buy a single story, when? Should I wait for the last minute, until I just can’t even do the stairs anymore? I mean I haven’t even owned this house for a YEAR yet. Or do I start working on that NOW, so that I can buy a house and make it my own while I am still physically able? I was advised to make the necessary renovations as soon as possible.

Just, FUCK.

Fuck fuck fuck.

I don’t want to leave this house. I love it. It’s got its problems, but I’ve got plans. I JUST got my office done where I like it – and since ‘where I like it’ involves…lemme count here…26 wall shelves full of toys, 3 bookcases full of binders and books and toys, and a zillion plastic drawers with all of my computer parts and crafty shit..that was a HELL of a lot of doing. And the ceiling slopes from 11 feet on one end to 7 on the other, and the 11 foot wall is FULL of shelves with toys/models/ stuff. It took me a lot of hours on a 7 foot ladder to get all that up there. And I don’t think I could do that again. I have a ceiling fan that needs an extension put on so the blades can turn without hitting the slope of the ceiling, and I’m not allowed, says my brother, to climb up there myself and do it. The thought of having to pull all of that down again, when I only just fucking got it UP, actually sends me into a precursor of a panic attack. IT TOOK HOURS. It FINALLY feels like I live in here. And to have to pull it all apart and move it again.

FUCK.

But the alternative is to wait too long. And then someone else will have to pull it down for me. And then put it back up in a new house. Or I move in to an apartment, and it probably does not get put back up at all. And I spend the rest of my shortened life living somewhere that doesn’t feel like it’s mine.

So what do I do?

Do I abandon the house I wanted, and finish what I absolutely must in order to sell the place? And sooner than later? Leaving the vision I had of this place unfinished?

Do I go through the whole rigmarole of home searching again? It was SO MUCH FUCKING WORK. SO. SO. MUCH.

And then holy FUCK the whole MOVING thing. I HATE packing. At least this time, hiring movers isn’t even a question, but it cost me a thousand goddamned dollars to do it. I don’t have a thousand dollars to move. I don’t feel like I have the energy to pack my shit.

And then if I buy a new house, then I have to renovate the fucking place, sooner than later.

I just wanted a place of my own that looked how I wanted it to look, with honeycrisp apple trees in the back yard, a nice big kitchen where I could turn those apples in to pies in, and a quiet space to live alone. And now I can’t have that. But do I give it up now or later? Do I wait for it to become an issue? Or do I preemptively resolve long term issues now while I have the strength and the ability? How long do I let life happen to me before I do something about this?

Why couldn’t I have been diagnosed BEFORE I bought the place, dammit?!

Just..FUCK!

I have a lot of hard choices to make, and there’s a lot of work ahead of me regardless. I suppose to real question, is do I want to have a hand in that work and a choice in how things turn out, or do I wait too long to be able to do this myself and have those choices made FOR me. I’m not too hot on other people deciding my future for me. It’s bad enough this goddamned disease is telling me what’s going to be allowed (not that I’m listening), but to leave everything I DO have a choice about, up to loved ones when it’s too late for me to have a say is pretty much bullshit.

I’ve never just allowed life to happen to me, I’m not about to start now.

But this is a really huge, expensive, work-intensive decision. I have some time, but not a lot, to think about it. At least I’ve already made a profit on the house – it was appraised at more than I locked the offer in. So hooray for that. I guess my first step is to call my realtor and ask for her advice.

But first, apparently, I’m going to whine on the internet about it.

All of My Stuff is Shit Someone’s Going to Have to Deal With

I am a very ‘stuff’ intensive person.

It’s not hoarders level, no, not quite yet, everything has a place and a reason for the most part. Except the boxes of VHS tapes out in the garage I need to go through and convert some of it to digital. The rest of those are just random comedy and shit I’ve taped over the years because I have an insane need when I like something to obsessively collect ALL OF IT. But there’s some important stuff on some of them. My 6th grade school play, videos of cast performances of Rocky Horror Picture Show. You know. Blackmail material. Important stuff. Other than that, though, I’ve got like 7 boxes of VHS tapes to toss. When I get around to sorting through it all.

Tthere’s been a lot of sorting through stuff already, but it could easily be a full time job if I let it.

A terminal diagnosis gives you a different perspective on a lot of things, it goes without saying. But one of the perspective changes that’s hit me hardest, one of the most concrete OH HEY YOU ARE REALLY GOING TO BE DEAD slaps to the face is the knowledge that someday, someone is going to have to go through all of my shit and decide what’s worth keeping.

…Not a lot.

I’ve been casting a more critical eye on my belongings lately. WHY do I have that thing. WHY do I keep those papers. What is someone going to think of when they have to sort through this box of random crafty shit. Are they even going to bother? Am I REALLY going to use this notebook of blank paper with water damage on the edges? Is anyone else going to want to? Am I going to actually make something out of these little bottles or is it taking up space? Having a suddenly finite time to get shit done forces you to narrow your perspective and see your belongings with an outsider’s eye.

So I’ve been getting rid of a lot of things, but I have to be careful that it doesn’t turn into a fatalistic FUCK IT THROW EVERYTHING AWAY IT’S ALL MEANINGLESS. Just…”This is a drawing I did in 6th grade. No one is going to care about this but me. Hell, *I* barely care about this, I haven’t even looked at it in like 20 years.” So I scan it and toss it, or just toss it. “This is a skirt I’ve meant to mend, but I know damn well I’m never gonna.” Toss. “This is a stack of books I’ll never read again.” Sell. “This is a dirty plushie that has some small significance to me but has been languishing in this box for sentimental reasons for like, ten years.” Toss.

This is all stuff I should have been thinking about, all along. A critical eye that everyone should ALWAYS have when keeping things around. I’ve collected a lot of random things with no lasting importance in the grand scheme of things, and I’ve carried them around with me for a lot of years, without ever looking at them. It’s been pretty interesting, viewing my stuff as an outside observer. “Why the FUCK did she have, like, a MILLION blank notebooks?!” “What the hell is with this little jar of cat whiskers.” “Forget the cat whiskers, why does she have a glass baby bottle full of burnt out matches?!”

BECAUSE IT LOOKS AWESOME.

I have a lot of stuff I’ve been collecting for creepy décor. Probably won’t make it to BE décor now, but maybe I can find someone who would appreciate it. I’ve been making an effort to go through all of this stuff as time permits NOW . Not only so that when I die, someone else doesn’t have to, but so that when I inevitably have to sell this house and move someplace wheelchair accessible, I don’t have to deal with it THEN either. Thinking of likely adoptees for some of this stuff, and realizing with more than a bit of sadness that some of my most awesome things mean absolutely nothing to anyone else, and will be trash.

And then there’s the dozen photo albums full of stickers. It’s an awesome and an embarrassing burden.

At what point do I stop collecting things? My collection still makes me happy, and so I still want to add to it, but there’s a gut-wrenching feeling, knowing that it’s…kinda pointless and is just going to be something someone has to deal with when I am dead. Realistically? That’s true of everything, and always HAS been. Everything you own, unless you deal with it, someone else is going to have to, when you’re dead. It puts a very somber note to material possessions.

Which does not mean I’m going to throw or give everything away while I am still alive. I like my stuff. It’s just that I’m developing a keener eye towards what is actually useless, even from an entertainment perspective. I have birthday cards from when I was a kid. Am I ever going to look at them again? No. But it feels so awful to just chuck them in the recycling bin. Those are my memories. But they’re just mine, and no one else cares, and they’re taking up space and eventually they will take up someone else’s time, needlessly.

Some days I care more about that than others.

Some days I feel like giving away everything that I can while I’m alive, to know that it was accepted and appreciated by the people I wanted to have it the most. Regardless, I want to ask people to be honest with me when I ask them, “would you like this?”. I feel obligated to do my level best to sort out these things while I’m still able to, so that no one has to deal with it when I’m gone. No fights over anything, no arguing over who has to deal with it, no resentment that X person got Y thing and you only got Z. Which is a real thing that has happened in my life before with Christmas presents and it devastated me. I’ve also had to stand by and watch relatives argue over my dead grandfather’s things. It’s a really shitty situation.

And you know, there is really no delicate way to ask someone, “when I die, is there something I own that you want?”

Who gets my drawings?

Whoever gets my computer gets it sans hard drive and that’s all there is to it, sorry. My best friend has strict orders to destroy that.

Don’t think that’s not going in my advance directive.