Tag: there is no timeline for grief

S-P/A Day

tragerstreit2 Comments

Unless you’re new to this blog, you know I’m an optimist. If you are new to this blog, welcome! Pull up a chair, have a look around. I hope you find something useful here. And oh, by the way, I’m an optimist. I can’t even tell you why that’s so, but I’ve always been. Even when things are absolutely shit, I still believe to the core of me in some way, somehow, things are going to be okay. Even if it’s a new definition of okay. I don’t think it really serves in purpose being pessimistic, because when you’re a pessimist and things go wrong, not only are things bad for you, but you’ve been miserable for a long time up to that point – because you’ve just been waiting for it turned to shit. “I told you so” is a cold comfort. Seeing it coming doesn’t necessarily make anything better. It makes you right, I guess, and if that makes you happy good on you. But the anticipation of misery just makes the lead-up miserable also. Besides, it really will be okay. I know it.

There are those of you out there who call yourself a realist. You’re not, really. You’re just a pessimist without imagination. If you are going to expect things to be bad, at least have some imagination on how you get there.

So, yeah, optimist. Even though the end of my path is set and dark, there’s still a lot of light here. More than I ever would’ve thought possible. I’ve waxed poetic elsewhere and I will again, and again, and again. Because it’s accurate. There is so much good in my life, more than ever thought I deserved, or possible, even. It’s here. I see it. It’sbright and glorious and why I continue to wake up every day.

But.

Sometimes.

Some days.

Some days it’s really fucking hard to see that light. Occasionally the darkness and the unfairness and the all-around bullshit and fuckery that is ALS creeps in the edges and obscures everything until it’s really hard to see anything good. Everything looks like a shit sammich and the world feels awful and hard. And when that happens, I take a spa day. Or rather, a S-P/A Day. A day to sit and think and allow myself to be sad. To dwell in self-pity and anger.

Because I mean, it’s really fucked up. I’m not such an optimist I can’t see how fucked my situation is. It sucks that this disease exists at all. It sucks that I have it. It sucks that I got it so young. I wasn’t even 40 years old yet. You’re not supposed to get this disease until your mid 60s. It sucks that it’s taking my hands, and my joys in life are all to do with using those hands to create. Create delicious things, create drawings, create these words that you’re reading right now. I’ll never make another wedding cake, or draw a pretty girl in a corset, or teach myself to knit, or pick back up calligraphy. No evenings whiled away on video games. No more dancing. I loved to dance. Eventually I won’t even have a voice with which to dictate these words. And alllllllll of that …sucks ass.

It sucks that I was diagnosed less than a year after I bought my house. My life was falling into place. I had a job I really loved, I was going back to school to further that career that I loved. I had signed up for driving lessons to easily get myself from my new house to the job that I loved. I had successfully dropped weight I didn’t want and was fitting in my cute clothes again. My plaid miniskirt was a wardrobe option again. I was wearing medium T-shirts and looking good in them. I was cooking healthy food for myself. I had my very own living room to dance in. I was dancing. I was mayyyyyyyyyyyyybe open for a new romantic possibility; my divorce was amicable and well in the rearview and there had been a few crushes. I was decorating my new home to be exactly the living space I had always wanted. I had a huge, gorgeous backyard just begging for a garden, and I had such plans for that garden.

It’s not. Fucking. Fair.

So yeah. Usually I can take it on the chin and keep smiling and find the good. Because there really is a lot of good. And it almost always outweighs the bad. But some days it doesn’t. It can’t. And on those days I sleep a lot, I take Ativan, I cry, and just generally wallow. I allow myself self-pity. I allow myself to get angry. And when the anger comes, I let it fill me and I feel it to the core and I rage. And I hate. And I keep crying. And then I sleep some more.

And then when it is over, when I’ve given it a whole day, I can put it aside again. I allow it one day of my life, and then the rage and sadness get shunted aside in favor of the day-to-day living that must happen. It gets overshadowed by the joy that still here. My anger serves its purpose and then it’s done. Until the next time. I try not to let mourning for who I could have been – and who I was becoming – overrule the happiness I could still grasp if only I allow myself to look for it. It’s not all doom and gloom, but sometimes it has to be. Just for a little while. So it can fill me, and pass through me, and keep me in touch with my own grief.

Every now and again it’s important to give those emotions their own time, so that I can put them away and get on with the day-to-day living that’s necessary, and to fully appreciate all of the fucking amazing things that are still very much a part of my life.

Tainted

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J likes rabbits. A very specific rabbit aesthetic, mind you. Get those Hallmark Easter bunnies out of here. Victorian rabbit dolls, like The Velveteen Rabbit, Albrecht Dürer’s Hare wood cut. When I see these kinds of rabbits, I think of him. If it’s something online, I share it with him through Facebook or text message. When I see these kinds of rabbits, I think of him and smile.

My brother Gecko likes birds. When I see something funny related to birds, I think of him. I forward bird jokes, and bird memes. When I see something funny about birds, I think of Gecko. Birds make me happy, because they make him happy.

Danielle liked manatees. I mean – I imagine she still does. She likes them because they were chubby and round and adorable. When I see something about manatees, I think about Danielle. I can’t share those things with her though; she’s no longer in my life. When I see things I know she would enjoy, I am reminded of her absence, and it hurts a little even though I like that thing. I enjoy manatees a little more than I might have otherwise, because they made her happy and I loved seeing her happy. But now they also make me a little sad because they remind me of her, and she’s no longer around and seeing manatees makes me miss her.

Sometimes I wonder what associations people have with me, and what sort of currently happy things will become bittersweet once I’m dead. Marshmallow Peeps, I’m pretty sure. Stickers and things with googly eyes maybe. Mister Rogers. Probably all of the things that people currently forward to me on Facebook and email, silly little jokes and references that make them think of me and smile; and knowing I would enjoy them also, send them along.

Sometimes I think about the time that will come, when there will be that thing that reminds someone of me, and I won’t be here to forward that thing to. Some cool fact, or happy little thing that someone will want to share with me, but they can’t. Because I will be dead. When some currently goofy thing becomes bittersweet.

What happy things I am going to taint with my absence?

It’s a pretty fucked up legacy, ruining something quintessentially silly. To be able to fuck up stickers for somebody. Stickers, for fuck’s sake. Happy little adhesive pictures. Someday, someone is going to be at a craft store minding their own business, and their eyes will wander to a happy display of delightful little sticky images, and they’re going to get really sad. Because they know how much I love them. Loved. It’s a completely ridiculous thought. An adhesive cartoon octopus is going to have the power to make someone cry.

We don’t truly possess the power to control how we are remembered. We can only try to steer the shape that our selves create in someone’s memory. A vague outline, to be filled in with the colors of experiences and emotions and perceptions beyond our control. I hope to be remembered first and foremost as kind. Death positive. My almost unhealthy obsession for cats, Mr. Rogers, stickers, googly eyes, nature documentaries, Halloween, spiders, cartoons, marshmallow Peeps, swearing, Bob Ross, Skyrim, Pokemon Go, etc etc etc etc notwithstanding, I really hope kindness and death positivity are the first things people think of when they think of me. I’m okay with those two things being a little bittersweet. I’m comfortable with someone coming across an article about green burials and thinking how much I would’ve approved and appreciated it and getting a little bit sad that they can’t hit that forward button.

Those other things, though, are all really happy things and I hope my death doesn’t ruin them too much. At least, not for very long. Marshmallow peeps have no business being maudlin. Sometimes I almost regret liking shit that is so silly, so fervently, because the thought of an adorable cartoon bat making someone tear up a little is really fucking depressing. It instead would make me very happy to think that someday one of my friends is going to slap a sticker on their laptop and think fondly of me without sadness coming in and fucking it up. Because stickers are awesome.

Bonus points for googly eyes.

Surreal

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Man, what even IS my life anymore.

I got a voice mail the day after that last post from my awesome nurse. “Hi, I read your blog, and I have some ideas about the AVAPS.”

Uhhhhh..hi there. I forget that people read this, sometimes. I have the best freaking care team ever, you guys. I got contacted from three different folks to ABSOLUTELY ASSURE ME that the machine would get paid for, the rules are more bendy for folks with ALS so please don’t stress about it. And then thanks to Nurse Awesome, I was contacted yesterday by Providence Respiratory to adjust my settings remotely to ramp that sucker down.

OMG SO MUCH BETTER GUYS.

It had previously been forcing air down my throat so hard my ears were popping. Seriously. I can handle it now. I might even get compliance on my own without my awesome peeps having to argue for leeway. It’s still not exactly comfortable, but it’s so much more manageable.

Thursday was noooooooot a good day, there were a million things going wrong, including hurting myself by trying to lean over in the chair to pull something out from under my wheels. I felt and heard something go POP, and owowowowowow. Not a crack, though, and breathing was still ok, so I just rode it out and after a few days’ soreness I’m alright. Then Thursday night someone said something a bit unkind and I kinda completely lost my shit for awhile. Occasionally there’s a trigger and I mourn the person I don’t get to become. Five years ago, I had my very own house, I had just lost a lot of weight and was fitting in all my cute clothes again, I was going to school to further my career, I had all my shit sorted out and my life was pretty fucking great, actually. Thursday night I let myself grieve for her, because that future is dead, and I let myself be angry at people who say really stupid shit.

Friday I had the distinct displeasure of taking the sodding van in for repair. It cost me $919. I’m extremely grateful to Intel for their short term disability benefit easing me out of the workforce, because fortunately I HAVE that money. For now. Although now the brake light’s coming on. So that’ll be fun.

Saturday I did nothing but sleep and fuck around on the internet.

Sunday I did something SUPER COOL but is not my story to tell, so just believe me when I say it was amazing.

This morning my cat woke me up because I could hear him chewing on plastic. When I located him, he had a huge long piece of cellophane coming out of his mouth, and was choking on it a little. I could not get him to come to me for ANYTHING, and when I stood up and tried to get to him, of course he backed away. I took another step towards him and fell right on my ass. It didn’t hurt, even though I’ve kinda got no muscle in my ass to cushion the fall anymore, but it knocked a bit of breath away.

And then since I was on the floor, my fucking cat decided to come check me out and I was able to get the plastic out of his mouth.

Motherfucker.

The fall didn’t hurt, but getting off the floor did. I wound up sitting on my foot rests and using that wheelchair lift feature to get myself up off the ground, but even with the grab bar on my bed, the chair to push off of, and my walker on standby, I wasn’t able to get over up on the bed. I had to lower myself back to the floor and let myself catch my breath before I tried again, and was very, very grateful to the Depends company for their fine product and my forethought to start wearing them to bed otherwise I’d have exacerbated my situation by having to catch my breath sitting in a puddle.

Welcome to the TMI Show.

Now, I have my awesome watch, so I was never stranded. I always had options. I’m just stubborn as fuck. I texted J but he was not immediately responding, so I tried the wheelchair lift again, and used it to ALSO steer myself right up against the bed this time, and was able to get in bed. And then after catching my breath, getting up to go to the bathroom to change my disposable shorts. I cried for like half a second, but realistically I know this is definitely going to happen again. Probably not the cat part, but there will definitely be another fall, and next time I very probably will not be able to get myself up. It’s twelve hours later and even though I’ve been in bed all day I’m still exhausted from the ordeal. So that sucks. If I hadn’t had such a huge meltdown Thursday, it would have happened today.

So that’s my life, this last week. Kinda a shit show, but there were definitely some good bits in there.

Also I wanna restate that my care team is amazing, especially my nurse. <3










Keep Your Mouth Shut, Or Just Say You’re Sorry

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We’ve forgotten how to die. We’ve forgotten how to be dying, and how to comfort. How to be okay when things are definitely Not OK.

We’ve lost the ability to not be absolute shitheads to each other by accident or ignorance when something terrible happens.

In my adventures with dying, I’ve accumulated quite a wealth of pretty words and useful words on the subject of death, dying, and grief. I’ve always meant to catalog and share them. When a friend who’d lost their mother was told today that she’s going to hell because she refuses to just leave her grief up to God and put on a happy face, I kiiiiiinda lost my shit. And knew the time to publish this is NOW.

So here it is, A Grief Primer.