Tag: sucks to be me

Oh yes.

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Since I’m keeping record. I had another sorta-fall yesterday. I was just having a weak day, the walk to the bus took me a half hour and I was DRENCHED in sweat by the time I got there. The bus came at 12:18 and I did not stop sweating until like….1:30. It was a bit muggy, raining on and off, but man. It took SO MUCH EFFORT.

The bus did the kneeling thing, lowering to what would be curb level – but it was still a high step because that stop is on the street. I pulled myself up on the handrails and I just didn’t have the strength to make it up and I wound up kneeling myself. It took me a second to haul myself to my feet, and while I was paying my fare and showing the Honored Citizen ID that proved I qualified for the low fare, I thought, “Well I just kinda negated the need to show him the ID, he just got a demonstration.”

Another slight bruise on my knee, another slight bruise on my ego.

Concessions

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I have an awesome bed. It’s a heavy black wooden frame, vaguely Asian looking, beautiful, and you could lose yourself in it. My boyfriend and I bought it together, had it custom made for us, and it was a California King sized futon mattress. You could sleep three in it; he was an active sleeper, so the expanse of it allowed for him to not bother me with activity when we slept. The two of us had our own universe sized bed to ourselves and three cats. We eventually got tired of the futon and got a pillowtop mattress instead. Being a pillowtop mattress on a futon frame made the thing come up to my waist, I had to hop up a bit to get in to it. The relationship ended, I kept the bed. It was the one thing I insisted on, though he gracefully capitulated without a fight over it.

I really fucking love this bed.

I had to make some small concessions for my elderly cat, when he became unable to climb in; I put a little set of stairs at the foot, up to some storage bins covered in a blanket. The bins became a bench for me to sit at and put my boots on in the morning. But lately it was becoming a bit of a chore for me to climb in, anymore. I found that I was bracing myself against the wall next to the bed and kind of pushing myself in, or vaulting up.

So today, I asked my handyman brother to cut the bed legs down. He took about seven inches off. It was a hell of an effort, because I had to break it all down and the headboard and footboard are each one solid wood piece, the headboard weighs a ton. I disassembled it, he took the pieces outside, and cut all but an inch off of the legs.

OH MY GOD so much easier to get in to bed now. I can just sit down on the bed and not have to climb up in to it. I’m so grateful to him for having done this for me today. The cats are a bit pissed off, because they can’t go under the bed anymore, there’s only an inch clearance. Which is AWESOME for me, because that means they can’t run under there to puke anymore. It was…pretty gross under there after I’d disassembled it. Took me the better part of an hour to clean my floor.

I’m feeling a little maudlin about the whole thing, if I’m being quite honest. This is the first concession I’ve had to make for myself. The first home arrangement, the first furniture change to allow for easier access with my diminished ability. And it sucks that it had to happen to my glorious bed. Someday I’ll need help getting in and out of this thing, when my arms no longer have the strength to lift me up. That day is far away, but the day I’ve first needed to make a change is today. The bins at the end of the bed, originally for convenience, will be mandatory someday too. This is the first in a long line of things I’ll have to change because I just don’t have the strength to do it another way anymore.

The sadness I feel about having to butcher a beautiful piece of furniture, though, is diminished by my joy at it being much easier for me to get IN to the fucking thing.

Home Owned

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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.

Breaking the News.

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There’s not a lot of good in a diagnosis of ALS.  Probably there’s NO good in it, except possibly finding out the real character of the people around you.  Which does not always amount to a good thing.  You learn things you didn’t want to know.  Sometimes people show unexpected grace, sometimes they display amazingly cold-hearted selfishness.  And sometimes you find out that someone you didn’t pay much attention to is actually an amazing person, and now you don’t really have a lot of time to get to know them properly.

I’m saying it sucks.

I’m facing a lot of challenges.  The worst  is yet to come, I’m certain; I still have most of my functionality, I have a good job, everyone’s being really supportive.  No matter what I may be dealing with right now, it will all pale in comparison to the day I’m finally confined for good in to a chair.  When I need help to get dressed.  When I can’t eat.  When I eventually stop breathing and die.

But for now?  The worst part, EASILY the worst part, is having to tell people what’s happening.

I’m a stupidly empathetic person.  I don’t know how to simply be sympathetic.  “This must suck for you” may come out of my mouth, but my heart is breaking for you.  I don’t know how to not do that.  I don’t know how to just observe someone’s pain or anger or fear.  I’ve never, ever been good at this.  I have always reacted more viscerally to other people’s drama than my own.  I will let myself be stepped all over, but God help you if you fuck with a friend of mine.  There is no such thing as casual observation in my world.  All of the stupid sappy videos on the internet – ALL OF THEM – hit me square in the feels.  I can’t watch movies that contain a lot of suffering, they freak me out.

I don’t know how to tell someone I’m going to die without it destroying me on their behalf.

It’s really fucking stupid.  I mean – it’s happening to ME.  This is MY life cut short, but I find myself apologizing profusely when people find out, and I’m very quick to reassure them that I’m okay.  Even  though I’m not.

I told a coworker today.

He got on the elevator with me this morning, just the two of us, up three floors.  This guy and I are not close coworkers, he’s a total asshole, but I kind of respect him for that.  He’s blunt.  Very straight forward.  When I had a problem with another coworker, he was one of my staunchest allies because he calls bullshit when he sees it.  I admire his ability to stand up for himself like that.

He wished me a good morning, and asked if I’d ever found a solution to the back/hip/knee thing that has been plaguing me.

“Uh.  Yes, actually,” I told him.  “It’s uh…ALS. Lou Gehrig’s.”

And I watched the reality hit him and take the light out of his eyes for a split second.  He’s probably the first person I’ve told that immediately understood exactly what this meant.  “Oh my god, I’m so sorry.”

I smiled at him, “Thank you.  I’m doing okay, though.  I’m going to keep working as long as I can.  I’ve got lots of time.”

He asked what the prognosis was.

“Typically three to five years,” I said, “but my progression is really, really slow.  I’ve got time.”

It felt like I was stabbing him.  “I’m so sorry.”

And because he was shaken, and because this was terrible news to him, I felt like I had to cheer him up.  “I’m doing okay though!  I’m happy to have an answer!  I’m doing fine!”

He put his mouth in a smile shape.

“…I’m sorry for bumming you out,” I told him quietly.

“NO,” he said quickly, “no no no.  You didn’t.  I’m sorry this happened.”  His mind was elsewhere.

He and I didn’t say much else as we got off the elevators and walked to our cubes.  I sat here at my desk awhile, my brain going a million miles an hour, wondering how the hell I could have said that different, how do I frame that so that it’s not ….

…so that it’s not exactly what it is, which is a coworker/friend/family member/acquaintance telling you “I have a terminal disease”.

It is likely only so touchy and raw right now because the diagnosis is still so new to me.  I can’t expect someone to blithely accept something like this when *I* haven’t even dealt with it yet.  And there’s no real comfort I can supply.  “It’s okay” is a lie.  It isn’t.  And I’m not yet okay with it not being okay.

I’m saying it sucks.

I don’t have the tools in my Cabinet of Social Awkwardness to deal with this properly.  If I’m going to be so goddamned empathetic, I feel like I should at least ALSO be intuitive enough to know how to tell people something like this in a way that’s not going to be shitty.

“Do you like baseball?”

“Hey, heard of Stephen Hawking?  Turns out we have a lot in common!”

“Good news!  It’s NOT cancer!”

A friend with a sense of humor just as fucked up as mine suggested, “Oh, it’s not cancer!  And it’s not heavy metal poisoning!  They said that I don’t have to worry about either of those; because those take YEARS to kill you!”

…yeah I don’t think that’d go over so well.

For me?  I prefer to be told straight up, with a matter of fact idea of what to expect.  It’s how I was told of my diagnosis to begin with, and I couldn’t have asked for better.  But not everyone can deal with that.  This is why I tried to tell people all along that something like this was a possibility – I’d rather have that be mulling around in the back of their head for awhile, and then confirm their worst fear, than tell them “I have ALS, I’ve got a handful of years to live” and have them freak the fuck out all over me.  Because THAT is what makes me freak out.  Not my own diagnosis, but the way people react to it.

THAT, so far, has been the hardest part.

I’m sure in a year’s time I’ll look back on this and laugh myself sick that THIS is what I was agonizing over.

But for now, I am hurting those I love and I’m powerless to stop it.

And I hate it.

I’m saying it sucks.