FORTIFY

on top of gravity:
I asked one of my (male) friends to stop using the phrase “man up” and he has been using “fortify” for the past two weeks instead and it’s just a little thing but honestly it makes a difference
and tbh it’s also pretty funny when I start to deflate in the library and he leans over and goes “FORTIFY”

Seriously try that. J and I use it now and it’s awesome. Sometimes when I’m whining, even though he knows I have every right to (CENTER CIRCLE, BITCHES), he will just grin and shrug and say, “Fortify.” And I will flip him off the best I can, and we laugh and go about our lives.

There will be a real post soon – I know I keep telling you this. But Monday is Clinic Day so there will be lots to report on that front. Meantime I thought I’d check in with just a quick thing about the weekend.

It wasn’t particularly kind, if I’m being honest, but there were moments of goodness interspersed, for certain. I mean, it started with a road trip to Olympia to see a black metal show. How is that not awesome? I’m not generally in to black metal, but Wolves in the Throne Room are an exception. They’re not so much Black Metal as…Black Folk? It’s more melodic than the usual stuff, and they have been properly described as “atmospheric black metal”. None of the cheesy SATAN666OMG stuff. I like it. It was two and a half hours away, on a school night, and the venue was this ADORABLE little place that served surprisingly delicious food and had the cutest waitstaff OMG and delightful bathroom graffiti (next to the signs that declared said bathrooms to be transgender friendly, use whatever restroom coordinates with your identity, and if someone gives you a problem, please report their asses and they will fix it). The music of course, was WAY too loud for the small room, and the geniuses decided that a smoke machine was a good idea so I spent some time breathing through my shirt, and then some jackass decided that you know what this concert needs? For me to blaze up in this tiny room.

So yeah I had a headache.

The show was awesome though, a dear friend in Seattle had joined us, and the opening act was every cheesy stereotype I could hope it to be, including announcing themselves in a Cookie Monster voice “WE ARE BLACK! FUCKING! CANCERRRRRRRRRRRRRRRRR!” And yet, the whole time I was listening, I was so tired I felt like I could fall asleep any minute. Even with Cookie Monster screaming about forests or satan or whatever. I don’t know what the hell that band was about. We got home around 4, because the show was an hour late to open, and had 3 bands, and was two and a half hours from home. I had wisely taken the next day off. I slept until like..3, and then took a nap, and then went to bed early. Working all day and then car ride and then socials and everything was way too much and I was DONE for the whole day.

Saturday I FINALLY got my Fallout 4 install working. I’d had to reinstall my operating system, so everything is cattywampus still, and I hadn’t played in forever because getting everything how I like it was just too daunting most of the time. So I finally got all my add-ins working, got it set up for use in the bedroom so I can lounge and play, annnnnnnnnnnnnnnnnnd…..discovered my hands don’t work well enough to play on the wireless keyboard anymore. My left ring finger seriously droops, and that’s the finger that controls moving LEFT, soooo….unplayable. I tried for a little bit and gave up. I’m going to have to get a controller. Which SUCKS because I am totally a mouse/keyboard gamer.

Sunday I had a friend come over to help me around the apartment. AGAIN – people just…show up! And do cool things! And the hardest part is always just LETTING them help. I’m so grateful I can never even HOPE to say how much. While I was shifting some things around for her arrival, I had a fall. Not a bad one at all, just…wound up on my butt. I got up with little difficulty and went about my day. I continued to think about it, but it didn’t really upset me or hurt me. Just, whoops, on the floor. Get up, move on.

That evening we went to dinner with Gecko for his birthday, and we did Brazil Grill. If you’re not familiar with the place, you sit at a table, and they bring huge hunks of meat around on swords. And they carve you some, and you eat meat until you DIE. And then they bring you cinnamon sugar glazed pineapple and you know you’re in Heaven. I love this place. Only trouble is, when they carve off that beautiful slice of tri-tip, you have to grab it with your tongs and take it to your plate. I had to use my tongs with my whole fist, and still didn’t quite manage to grab it a couple of times. The delightful gaucho (dude with the meat sword) apologized every time, but it was clearly ME dropping it, not him cutting, and I wanted to tell him “It’s not you, my hands just don’t work” but I didn’t. I wound up putting my freakin’ boob in my plate once, reaching over to try and grab the slice properly. And then cutting up the meat was its own challenge, and trying to be discreet when my hands inevitably cramped up with the effort was useless because 1) I have to do a prayer gesture with my hands to get it to stop, and 2) my brother is observant AF. But it wasn’t a huge deal, just a quiet “hand cramping?” “Yah.” and that was the end. I realize next time, I’m going to have to ask someone to grab the slices for me. And probably cut my steak.

Four slaps in the face from ALS this weekend. The exhaustion, the loss of playing video games with mouse and keyboard, the fall, knowing I’m gonna have to have my steak cut for me like a toddler from now on….and yet.

And yet.

Not once did I lose my shit, or even feel like I was going to. Or needed to. Just a quiet acceptance. The exhaustion was to be expected, and things like this are just going to require a full day recovery anymore. That’s how it is. Gaming, well, I knew that it was coming, and I’ve been keenly aware that my ring finger in particular is very weak, so it makes sense that I can’t really do it anymore. The fall, well, they’re going to happen. Until I am no longer able to get up out of a chair, and even then, I’m going to get dropped. Being unable to cut my own food in the future, well, I’m honestly glad I’m still even able to EAT steak. And I have people willing to cut it for me. Gecko and his husband would have done it in a flash, had I asked. And next time, I will.

ALS still sucks. But I’m getting better at coping with the losses, to foresee them happening and bracing myself.

To fortify.

And that’s pretty awesome.

Not even going to mince words here.

Fuck everything about this image. Fuck the message it conveys, fuck the people who made it, fuck the president of the stupid fucking website it came from.

suffering is not beautiful
suffering is not beautiful

I’ve ranted about this before. And I will again. Because every time I hear something like this, every time I see something like this, I am filled with a rage indescribable in its intensity. I am sitting here, sobbing, because I’m angry. Because I’m afraid of someone thinking they have the power to make this decision on my behalf. And because I can’t make them understand. Short of committing an act of extreme violence or wishing something horrible to happen to a loved one to present them with the opportunity to reconsider their opinion, I am completely unable to make them understand how fucking HATEFUL this is. I want you to look at a dying woman with inoperable cancer and tell her how lucky she is to participate in the passion of Jesus Christ.

In my rage, I typed, “Let me stick a knife in your guts and then while your stomach acid digests you from the inside out, you can tell me how beautiful your suffering is.”

There is no grace, no beauty, and no “opportunity” inherent in terminal disease. There is nothing beautiful about starving to death because you’re unable to eat. There’s nothing graceful about shitting your bed every day. There’s no opportunity to be found while trapped in a shell of meat you’re unable to control, no opportunity when you’re in a hospital bed wracked with pain that the strongest drugs can’t touch, no opportunity while your memories and self slip away until you’re nothing but a meat robot that looks like someone your friends and relatives used to love.

We FIND grace, beauty, and opportunity in dying because we must. Because we have no choice but to laugh at pain, to smile at death, and to accept. Because we can not fathom a world in which suffering is for nothing and pain has no reason or purpose. And when all hope for life is lost, we find a new hope in allowing an end to the torment. In accepting our own death, at last, we find grace in deciding when your limit is reached, beauty in allowing the suffering to end, and opportunity to end things on your own terms, in your own way, in your own time.

Enjoy the life you live, that you are allowed to have such a hateful opinion because you have no idea what it’s like to be close to someone who wants nothing more than a quick end to their inevitable, pointless suffering. Praise Jesus that you don’t have the opportunity to make this decision for yourself because you’ve still got a life ahead of you. And enjoy that you have the opportunity to think you are entitled to make this decision for others.

Because you don’t.

You really fucking don’t.

Spoiler Alert: #everyonedies

Today’s post comes with story time!

Story one:

I’m walking with the cane into the cafe. There’s a girl who works there that I smile and say hello to practically every day. She notices the cane, today. I don’t always bring it down when I get a drink, but today I have. I’m a little wobbly, anymore.

“OH no, did you hurt yourself?”

“No,” I shrug, “I have Lou Gehrig’s. I’ve just gotten weak enough finally that I need this a lot.”

“Oh, god, I’m sorry, I’ve heard of that. Is it painful?”

“Oh no, nothing hurts, really, but it’s just a loss of strength over time. I guess that’s a good thing, nothing hurts even if you ARE dying slowly,” I half-joke.

“Well aren’t we all,” she smiles back.

“Truth,” I tell her, and we part ways.

Story Two:

We’re walking to a restaurant, my coworkers and I. We parked kind of far away, and I’m struggling a little with my cane, to keep up with the crowd.

“Keep up,” he jokes, falling behind to walk next to me.

“I’m trying,” I tell him, grinning. “Y’all bastards walk too fast.”

“Well maybe you’re not trying hard enough to keep up,” he teases.

“Yeah sorry, everything’s slow with me. Neurons burning out, walking, you name it. I’m *sorry* I am slowly dying,” I joke.

“Well, everyone’s dying,” he shrugs.

“Some of us just take the fast track,” I tell him.

The Rant

Please, please stop saying “well technically everyone is dying”.

Please.

It’s like when the cashier is ringing up your stuff and something doesn’t scan and you snort, “well I guess it’s free.” It’s a dumb joke, everyone’s made it, she’s heard it a thousand times. And it’s already old and it wasn’t funny in the first place and you’re not that clever, just pay for your shit and leave. And you know it’s a dumb thing to say, but you said it anyway, and will say it again, but everyone politely laughs even though no one thinks it’s clever.

Only, …no. Okay. It’s not really so much like that. It’s..

It’s dismissive as FUCK is what it is. Yeah, okay I get it, everyone is dying slowly. We are all biding time until our own demise. Everyone, eventually dies. MEMENTO MORI.

When you tell me, “yeah well we’re all dying, right?” I know you’re trying to soften the blow. You’re trying to comfort me in a way, to include me with the rest of the human race, telling me that death is normal and it’s okay. To make light of the situation. And I will always, always joke back.

But I don’t want to.

What I WANT to say is “fuck you”. You’re completely dismissing my death. You’re diminishing the sadness of my struggle. You’re telling me that I’m nothing special, that my disease is no big deal. Everyone dies. So what? My disease will kill me but hey, everyone eventually dies anyway so what does it matter? What do YOU matter? What are you whining about? Everyone dies, so what.

So what? Yes, everyone dies. But YOUR book has a billion potential endings. Boating accident! Heart attack! Cancer! Pneumonia! Peacefully in your sleep with your loved one by your side! Gun accident~! You could die of ANYTHING! You could die during sex! You could die from mountain climbing and being exposed to the elements! You could join an international drug cartel and be gunned down on the private air strip in Boca Raton when Louie rats you out! You NEVER should have trusted Louie! You could fall on the sidewalk and hit your head JUST SO and become brain dead until your tearful mother signs the paperwork and they pull your plug. Choose Your Own Adventure Death! If you would like to die of accidental CO2 poisoning, turn to page 56!

My Choose Your Own Adventure book has three possible endings. A long, lingering loss of ability and strength, humiliation, frustration, and fear that ends in…..

OPTION ONE! Sudden accident. I mean, anyone can get hit by a car, randomly, or some freak accident, lightning strike, store robbery gone wrong. Anything could unexpectedly kill me. We’re even on that front.

OPTION TWO! Suffocation! I choke on my own spit, unable to breathe because my muscles have all atrophied and I can’t swallow or take a breath and eventually I choke to death. Drowned in my own spit.

OPTION THREE! Suicide! I decide somewhere along the story that I’ve had JUST ABOUT ENOUGH, thank you, and take some pills if I can still swallow, or push the meds into my guts via feeding tube.

THAT’S IT. Those are my options. Your roadmap to life has a lot of lingering little trails and you never know where they’re going to take you. You might decide to become a mountain climber at 60, you might die tonight, you might waste your life away at some meaningless job until you have a heart attack at your desk. Your maps are open and wide and the ends aren’t known but the possibilities are endless. My map branches three ways, and there are many many stops along the way. Loss of walking. That cuts off a thousand roads. Loss of hand/arm movement. Well there’s a ton of other destinations crossed off my map. Unable to eat. Well that’s a lot of stuff closed off to me, what with the wheelchair and the feeding tube and hell, you need a special van to travel now, you can’t just pick up and go. So my destinations are the trauma ward, a palliative care hospital bed, or a dose of pentobarbital in a place of my choice.

We’re all dying. Some of us have our stories written, and the endings are not happy. There is no happy ending for ALS. And when you compare your unwritten book to my Cliff Notes, it’s insulting.

Your story probably does not have chapters in it about falling for absolutely no reason and getting a really horrible looking scratch out of it but not allowing yourself to show pain because the people you’re with are freaking out that you fell and you have to assure them you’re okay. It probably does not feature you cleaning out a cat box and breaking out in a sweat over that small, stupid effort. It probably does not feature a feeding tube or respirator as a given course. It likely does not have six introspective chapters, each titled some variation of HOLY SHIT I AM GOING TO DIE IN A REALLY FUCKED UP NIGHTMARE WAY AND I KNOW IT’S COMING. Your story might have a little chapter about being embarrassed in front of someone when screwing up something you were trying to say, but I doubt it has six paragraphs afterwards wondering if that was a one time fluke or is it a sign your tongue is starting to atrophy too? Did I enunciate when I was on the call with my manager earlier? Is this guy saying ‘what’ because he didn’t quite catch what I said or because I have lost the ability to speak and he literally has no idea what I just said? Your book has going to work and going shopping, but does it have a pre-chapter about managing a ride that isn’t going to be too hard for you, or not purchasing #thing because you’re not sure you can lift it up in the cupboard where you’d like it to go? Your story’s ending is unwritten. Mine is written in stone, carved by hands that no longer have the power to pick up a chisel.

Telling me “everyone dies” is the same as co-opting #blacklivesmatter into #alllivesematter. You’re technically correct AND YOU ARE COMPLETELY MISSING THE POINT. And diluting the original message with your vapid need to be included. Of COURSE everyone dies. Of COURSE all lives matter. BUT THAT IS NOT WHAT WE ARE TALKING ABOUT RIGHT NOW. You are dismissing the message and selfishly, HORRIBLY, turning the story about you. In telling you that I am dying, I am not saying no one else dies and no one else has to mourn. I am not dismissing the value of your mortality. I’m not denying your story has an end. I’m telling you mine is brief. As someone put it, by saying “save the rainforests” I am not saying “fuck all the other kinds of forests, they’re deserving of destruction”. By saying black lives matter, it’s not to say others DON’T. To say that I’m dying is not to say that you aren’t.

It’s the same, also, as when you tell a friend your woes and s/he says, “That’s okay, I lost my job today.” IT IS NOT OKAY. YOUR PAIN DOES NOT DIMINISH MINE. You have a right to your suffering, and it does not trump or cancel out anyone else’s. People will often try to one-up your sadness, and I’m guilty of doing this too, sometimes, and it’s a horrible, horrible thing to do. I don’t understand what the point of it is. I see your suffering and raise you “my keys got locked in my car”. Your pain doesn’t matter, because I have a completely unrelated circumstance that I somehow have determined is more impactful than yours and therefor I am suffering worse and I WIN at the FML game! And LOSE at Friendship and Human Interactions! And I leave with a parting gift of making your situation worse by dumping all over you when you wanted comfort from me! I’m going to put that statement again in its own line, because it’s important.

YOUR PAIN DOES NOT DIMINISH MINE.

We are all dying. Some of us just know the way. And if you don’t, then I’m happy for you. Seriously. I rejoice with you in not knowing your end. It’s an amazing, free world of possibilities and I’m delighted you get to dance in that sunshine. I will read my own story, and dance as long as I can, while the rain comes, before I’m washed away. Both of our stories are fantastic pieces of literature, but because I got a sneak peak into the last chapter, it doesn’t make my book any less worth reading. Your book’s unknown end chapter doesn’t make your book better than mine, or different. And when I tell you the plot, you don’t have to tell me that EVERYONE’S story finishes. Because of course it does. I was just trying to tell you about mine for a second.

And I joke about it, because it’s a sad thing and I try to keep things light; but I want you to know that it’s crushing when you dismiss me like that. Everyone dies. Yes. This is an unfortunate fact. A fact that does not change that I have a terrible disease and I’d like to be able to talk about it without it being diminished to a non-problem by the words “everyone dies”. You don’t need to one-up this. You don’t WANT to one-up this. It’s okay. Just say ‘sorry’ or shrug and agree, or laugh with me about it, or tell me to man the fuck up, tell me anything but that I am insignificant because of course everyone dies. And none of this matters. Because I fucking matter. If I didn’t, you wouldn’t be wasting your breath to piss me off with those words.

Everyone dies.

Some of us have a story they’d like to tell, before that happens. Not because they think it’s the best book. Not because they don’t think you have one, too. But because they think it’s worth reading. So, thank you for reading mine, so far. I hope it’s been worth it.

Everyone dies, but I guess not everyone gets to blog about it, yeah?

Complicated

“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

“Complicated.”

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.

…It’s complicated.

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.

It’s complicated.

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.

Vocabulary

In addition to changes to my lifestyle, I’ve made changes to my vocabulary. I thought maybe you would like to know these words, too, because they’re verbal shortcuts, easy ways to explain something, so long as the person you’re dealing with knows these words, too. So! Some of these are specific to me, and I realize that people reading this might not understand. Then there are some that are REALLY useful in dealing with terminal diseases, and the people who have them. It includes reading other pages. That’s right, I just gave you homework. Deal with it. *sunglasses descend*

MY WORDZ, LET ME SHOW YOU IT:

Godzilla Disorder/Disease
This is how my friends and I refer to ALS. It got that name before I knew what it was, it was just a better phrase than “whatever the hell is wrong with me”. My main babe Danielle came up with it, as I was trying to figure out what to tell people when they asked why I was limping. “Just tell them you got attacked by Godzilla. In the legs.”

Get-Ups
These are different than spoons (definition of that to come). There is a specific number of times I can get up, out of a chair, out of a car, off the floor. Once I’m upright, it’s fine, but the effort of getting up takes more out of me than a lot of other activities. It’s like…it takes more gas to stop and start a car at a stop light than to leave it idling. Same principle. Once I’m standing, it’s fine, but there are only so many times a day I can get my ass vertical.

General Vocabulary, reporting for duty, SIR!

Silk Circle
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
If you only read one thing from this list, it needs to be this. This is how to behave when someone is having a hard time. This is how trauma works. Comfort in, dump out. THIS IS IMPORTANT. There is no better way to put this, and no better way to behave.

Spoons

The Spoon Theory written by Christine Miserandino


This is basically the idea that a terminally ill, or chronically ill, person has a very specific allotment of daily energy units. Mana, if you like (you nerd). You spend these points throughout your day, and when they’re gone, that’s it. Game over. You think “Going to work” is one unit. But no. Every little thing that you don’t even think about (getting out of bed, brushing your teeth, put your clothes on) takes one point. It’s good language to check in. “How are your spoons?” “I’m kinda running on a spoon deficit today, sorry, I can’t go.” “Are you gonna have enough spoons to do all that?”

Also? she totally stole a spoon from that cafe.

Holding Space

What it means to “hold space” for people, plus eight tips on how to do it well


This is a relatively new one for me. I haven’t talked about it here before. This is the idea that sometimes, the absolute best thing you can do for someone, and usually the HARDEST thing to do, is hold space for someone. Just stand by, and be available if they need you. Don’t interfere or get involved if they don’t want you to. Just be on standby for when they do. It’s really hard to stand by and be non judgmental and simply offer support; but I want you to know that it’s the absolute best thing you can EVER do for anyone having a hard time. Just, say you’re there to help, and then back off. Hold space for me. And I’ll hold space for you. I can’t promise I’ll be perfect at it, I’m still learning. But I’ll do my level best.

There are certain to be words to come. There are always new things. New swear words, if nothing else.

Assistance

(Okay, sorry, it’s been a long time but I knew this post needed to be next and it was really hard to think clearly about. For reasons that will become very clear. This post won’t be a happy one, I wager.)

There’s a chair, a table. The table has three prescription bottles on it. The chair is draped with colorful striped fabric. She enters the screen, sits calmly, and smiles warmly at the camera. She picks up one of the bottles.

“I got my prescription today, to end my life when I see fit.”

She says it with a little difficulty, but it’s ALS, not emotion, that makes it hard to talk. She’s calm. Confident that she’s made the right choice. Beautiful. She explains she’s not going to take it, not today, because life is still too good. She thanks everyone for supporting her decision to choose. She has bulbar onset ALS and while she’s lost the ability to swallow anything, she can still speak; which is good, she says, because she has a lot to say. She puts the bottle on the table, and she tells her viewers how much she loves them all.

She glances at the prescription bottle on the table, almost lovingly, and faces the camera. Her warm smile brightens her face again, she is serene. “It’s a good life,” she says. “Live it.”

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Assisted suicide. Death with Dignity. Voluntary Euthanasia. It’s an extraordinarily controversial topic. It’s something I’ve had strong opinions on ever since I heard of Dr. Kevorkian. It’s something I’ve thought about a lot since ALS became a possibility for me, and it’s been on my mind almost every day lately thanks to Brittany Maynard.

If you’re not familiar, congratulations, you’re probably one of the five people who’ve escaped this story. You can read it here. The short version is, she was diagnosed at 29 with terminal brain cancer, was told she had months to live and an excruciating death waiting for her. So she chose to end her life under her own terms. She openly talked about how she would do it, and knew exactly when. November 1st, she took her medication and died.

It’s polarized the world it seems. Everyone has an opinion. She had the right, she did not. She was choosing to die with grace, she was a coward committing suicide. She was strong and brave, she was thwarting God’s plan for her. Opinions were very strong, debates were very heated, and theoretical relatives were killed daily in debate, by agonized suffering or suicide, and everyone thinks they know what is best. And everyone – EVERYONE – had something to say about it.

And maybe some day someone close to you will need to decide on this option. Maybe an aunt with cancer. A father who gets into a terrible accident with injuries incompatible with life. Or God help them, someone with ALS. If they live in a select handful of places, they will have this option to choose. They will have this conversation several times with a medical professional. And if they choose to die, they will pay an obscene amount of money for a prescription to die, because it is OH MY GOD EXPENSIVE and insurance will not cover it. (Which is stupid, really, you’d think the insurance company would pay YOU to stop costing them so much.) But they get the prescription, and maybe they take it, maybe they don’t. Whatever side of the fence you’re on, whatever opinion you have on the subject, allow me to make one thing abundantly clear for you.

YOU GET NO FUCKING SAY IN THIS DECISION.

Absolutely NONE.

There is no debate. You get to sit the fuck down and shut your face when that person makes that decision. If they ask you how you feel, fine, but know that you do not get ANY fucking say in what they decide. You can have all the arguments in your head that you want. But if someone makes the choice to die, and their doctor agrees? Then it’s done. You have no right to interfere with it. At all. Keep your opinions. Honor their decision. If you disagree, fine, but know that it makes LITERALLY NO DIFFERENCE.

Comfort them in their last hours, support them until their final days, and keep your goddamned opinions to yourself.

_______________________________________________________________________

I was 24 when Jack Kevorkian came into the public’s eye, when he was arrested and then later sentenced for murder because he’d helped terminally ill people to die. “Voluntary euthanasia” they called it then, in all of the court reports and news articles. Now it’s more bluntly called “assisted suicide”. They mean the same thing, but ‘assisted suicide’ has more of an accusatory feel to it and so that’s what people call it now – because Society Does Not Approve.

“It goes against God’s plan,” is the most used argument against it. “This happened for a reason and you are giving up.”

“It’s Death with Dignity,” is the most used argument for it. “It’s a humane close to an inevitable ending.”

And even then, as these two sides yelled at each other and called each other “murderer” and “sadist”, my 24 year old self thought about it with a calm heart and careful deliberation. “If I were ever in great pain and going to die eventually,” I decided, “I would want to kill myself. I think people should have the right to die on their own terms.”

And my 38 year old self thought about it with the same calm and deliberation. “If this turns out to be ALS,” I decided, “I want that option available to me.”

And my ten-days-away-from-being-39 year old self stared at the carpet for a moment, letting the diagnosis wash over me, and I thought about it with calm and deliberation. ” I’m really, really happy that I live in a state where it’s legal. I need to figure out what is my breaking point so that I can get the process started before it’s too late.”

________________________________________________________________________________________________________

Spoiler Alert: I’m going to get that prescription. I am very probably going to take it.

And you know what? There’s not a MOTHERFUCKING THING you get to say to me about it. This is MY choice. This is a step *I* will take if I want to. I know what’s best for me. I know how much I can handle. You don’t. And you don’t get to dictate to me when I can die.

I already know how my story ends. I’ve seen the last chapter, and it’s terrible. I want to be able to close the book before it gets that far. It’s a shitty close to a pretty good story, otherwise. “Died happily, surrounded by loved ones” is a much more kickass end chapter than “died slowly, suffocating and starving, languishing in agony at not being able to interact with those she loves while watching them steadily stop coming by and trying to talk to her because it was sad and awkward”.

You DO have the right to think and feel anything that comes your way. Even if it’s the bullshit idea that “this is God’s plan” which I will NEVER, EVER ACCEPT. If it’s in God’s plan that I should die like this, then God is a jerk. I don’t believe God hates me this much; I just believe that shit happens. And this sucks. And it’s no one’s fault. And that’s okay. There doesn’t need to be a plan or a reason for this. But if you feel there’s some proper reason for this, that’s fine.

I would never dictate to you how you should feel. It’s not my right, and not my place. Your opinions and your feelings are as important to you as mine are to me. Even if you disagree with me, it is entirely your right. I might debate you on logic, but I can’t and I won’t debate you on feelings. I respect your right to disagree with my choice, but that does not give you the right to interfere with it.

I would never presume to tell you how to feel, because I can’t know. But I will tell you not to presume to know, because you can’t feel.

You’re even welcome to share your thoughts and feelings with me. Just know that it’s going to make absolutely NO fucking impact on my choice.

I don’t know what my breaking point will be. It sort of shifts around, some days I think I can live with things that I can’t fathom, other days. And it may well turn out that I don’t think it’s really all that bad, even at the end. It’s amazing what you can get used to, if the change is gradual. I may think that spending my entire life having ten minute conversations that consist of three words is okay, that being an active brain in a meat shell completely at the mercy of everyone around me is a perfectly decent way to live.

I currently think I probably want to die before it gets that far. The last thing I want to leave is an impression of being a burden. Even if it’s not true, I know that I will start to feel like people are resenting me for being useless, that they’re tired of me taking so fucking long to get anything across with my stupid little eyegaze tablet. Even if I know it’s not true – and I do, I know that I’m loved and people would happily shoulder me for as long as I need them to – I know I will feel that way. Because I know me better than anyone. And that might be harder to bear than the humiliation of having my diapers changed. That WILL be harder to bear.

Some days I think that my mind is active enough, I’m solitary enough, that I’d probably be okay to be so isolated, as long as I have a sliver of communication.

Some days I think, when I’m no longer able to eat.

Some days I think, when I can no longer breathe on my own.

Some days I don’t think about it at all.

I just know that I need to do it, if I’m going to, before I’m no longer able to do it on my own. You have to do it yourself. And even if it’s someone putting the meds in a feeding tube and putting your hand over the syringe so the weight of your hand pushes the meds into your stomach, it has to be you. Which is right and proper, because I could never ever ask someone, “Will you help kill me?” Even if I have people who love me enough to be willing to go that far to help, I would never ever ask someone to carry that burden. It has to be under my own power.

And it could very well be that I’ll get that prescription and never use it. I’ve been told that many more people get it than use it. And that’s okay. But I want the choice to be mine. And I want that option. I want that right, and that power. That decision belongs to me.

And when I die, be it by time or by chemical, you guys can do whatever you want to celebrate or mourn me; throw a party, get drunk, burn my sticker collection. My funeral will be for you – but my death is all about ME. You can decide to celebrate or curse me however you like when I’m gone, it makes no difference because I’ll be absent. And you can celebrate or curse my choice, and it makes no difference, because you’ll be absent. It’s the last and most intimate experience anyone ever has on this earth, and it’s personal and private. Sacred. No one can encroach on that space. No one should ever think they somehow get the right to think they can tell me how to die.

You only get to decide for yourself whether you take my decision on death with dignity.

“Put a Smile on It!”

“…Put a sock in it!”

I’ve been pretty damned whiny the last couple of days because I’ve developed shingles. Which, if you’ve never heard of it, is FUCKING AWFUL. It sounds all happy! SHINGLES! YAY! There’s probably confetti involved! But it’s basically a really horrible version of chicken pox, which can happen to anyone who’s had it; the virus lives on in your body and randomly it may decide to reactivate. Only instead of the red itchy bumps all over, it’s a really angry, blistery rash and searing pain in half my body, fever, nausea, and muscle aches. It’s like the worst sunburn you’ve ever had and the flu at the same time. I am the queen of high pain tolerance – I’ve had dry socket and never even winced when the dentist packed it with that nasty gasoline and cloves shit – and this has had me whimpering and writhing. I had oxycodone left over from the muscle biopsy; I took one last night just so I could get some fucking sleep.

It really fucking sucks. And I’ve NOT been shy about saying so. Because I am goddamned miserable. And while it happens completely at random, one of the things that MAY trigger it, is stress.

Okay, so ALS causes stress. But the actual disease has been the LEAST of my worries the last couple of weeks. I had to put down my cat, Midori, after living with him for 19 years. HALF OF MY LIFE. It was emotionally devastating. I adopted a new kitten, which is a happy stress, but a stress nonetheless. I gave a talk in public which triggered all KINDS of nervous stress. I attended a party full of strangers. There WAS my first Clinic session, too, and the resulting “…goddamnit” of beign assigned a cane and a breathing exercise, but seriously? ALS is the least of my concerns right now. Real life is happening.

And so today, when I posted a tongue-in-cheek: “I’ve figured it out. I have shingles because I’ve been telling people how lucky I am that ALS doesn’t hurt! hahahahhahaawww sad trombone” I didn’t really think a whole lot about it. I had just been enthusing Tuesday afternoon after the ALS talk I gave that it was AMAZING that nothing hurts and how lucky I am. The timing struck me as funny, was all.

But then I was told that I need to cheer up. If I just keep a good mental attitude, I might be able to beat ALS. Just..buck up! ALS won’t kill me if I just think happy thoughts and don’t let it!

Okay. this is important, so I’m putting it on its own line. In bold.

Positive thinking has never accomplished a documented medical result.

NEVER NEVER NEVER. It is not going to cure depression, it is not going to cure a broken leg, it is not going to fucking cure ALS. And I DO have a positive outlook, and I really DO believe things are good and somehow everything is going to be okay, somehow. ALS is not my life. I am not All Disease, All the Time. That’s just not how I work. But having a sunny disposition is NOT going to cure me. I am dying because my motor neurons are burning out. No amount of laughing is going to keep me breathing. No amount of happy thoughts are going to allow me to continue to put my face in a smile shape when my facial muscles stop working.

A positive attitude dictates HOW I have the disease. It does not dictate IF I have the disease.

A cheerful disposition means I don’t lose friends by bringing up ALS and how I’m going to DIE in every conversation and make myself miserable to be around. It means I continue going to work and don’t wallow in self pity while I cease to be able to afford my mortgage because disability is a fraction of my usual pay. It means I keep going as usual. I continue to live my life, as normal, and don’t become a burden to be around, even to myself. It means not every waking moment is filled with terror and “JFC I AM GOING TO DIE WHAT IS THE POINT OF ANY OF THIS SHIT”. It means when someone invites me to visit them in a years’ time, I say “that sounds lovely!” instead of “I don’t think I can, I’ll probably be in a wheelchair by then.” It means “I’ll try” instead of “I can’t.”

And the occasional whining is to be expected. There are aspects of ALS that fucking SUCK. That whole…”you’re gonna die sooner than you thought” is pretty shitty. No longer being able to dance, sucks. Having to take five minutes to haul your laundry up the stairs sucks. Realizing that you forgot something downstairs and having to think long and hard about whether it’s worth the effort to go back, sucks. A stress-induced searingly painful fevery rash of DOOM sucks ass.

And I am fucking allowed to complain about these things. CENTER CIRCLE, BITCHES.

It does not mean that there’s nothing more to my life. The new kitten does NOT suck (except when she jumps up on the bathroom counter and knocks over a glass that shatters allllll the fuck over my bathroom floor). The fact that I am still able to work does not suck. Birthday cake Oreo cookies do not suck. Friends who are willing to help me get wherever I need to go do not suck. The good far, far, far, FAR outweighs the bad. All the time. And always will.

But knowing this, and having a fantastic attitude towards life, the universe, and everything, is not going to save me from an early death. And that’s OKAY. I’m alright with that. It doesn’t mean there’s no point to having a good mentality, it just means it’s not a cure. You *can’t* cure this disease. All you can do is treat the symptoms. And a good goddamned attitude is an amazing restorative.

In the meantime, you’re essentially telling me to just put a superficial happy face on a horrible and serious fucking situation, and that’s selfish. All you’re really telling me is that I can’t turn to you when I’m in a low spot. You’re making me resent you because you’re negating my frustration. You’re telling me I’m not allowed to be unhappy.

You’re telling me that it’s *my own fault* I’m dying because I’m just not happy enough.

And that is COMPLETE FUCKING BULLSHIT.

Fuck You and Your “It’s going to get worse”.

Okay so wow.

https://www.facebook.com/fox12oregon/posts/10152550068903701?comment_id=10152550463373701

I KNOW BETTER THAN TO READ COMMENTS ON THE INTERNET. I KNOW.

But this was important. This is something I care a lot about. If someone out there wants more information about this, I’d like to be able to step in and help out. And Jack asked if I’d seen them, and linked me, so I clicked.

Most of them? Lovely and supportive. Hooray for those people. I love them. And my friends who spoke up in support. I love you.

But a hearty FUCK YOU to the shitshark who felt compelled to comment “Pretty lady if she didn’t put all that metal in her face.” Yeah, I got enough of that oh, at EVERY FAMILY GATHERING GROWING UP EVER. And I didn’t give a shit about how my FAMILY felt about it, why the fuck would you think YOUR opinion matters to me? Get fucked SIDEWAYS. I didn’t have to weigh in though. My posse stepped up and put him straight before I got there. <3 These other ones, though. HOLY SHIT, people. "My father died because of ALS. He was one of four in one family. And I tell you to have the voice record is the smallest problem you will have when you have ALS!!!" "Mom passed from ALS in 93, not bn able to talk was the least of our worries. Absolutely horrible disease" …I've actually heard of people approaching someone with ALS and say, "It's going to get so much worse" ..AT A MOTHERFUCKING SUPPORT GROUP. GOD DAMN IT, PEOPLE. Here's a clue you are so DESPERATELY NEEDING: Telling someone with a terminal, degenerative disease "it's going to get worse" HAS NEVER BEEN USEFUL TO ANY ONE IN THE HISTORY OF FOR FUCKING EVER. The only one who get ANYTHING out of that is YOU because you get to feel OH SO FUCKING KNOWLEDGEABLE. Your dad has ALS so OBVIOUSLY YOU KNOW ALLLLL ABOUT IT and someone who actually HAS this disease HAS NO IDEA WHAT THEY ARE IN FOR so you had BETTER TELL THEM. Fuck you. Keep your fucking mouth shut. NEWSFLASH: You are NOT helping. You are NOT helping me prepare for the harsh realities of the disease. You are NOT educating me. You are not even freaking me out. You are JUST PISSING ME OFF. Let me educate YOU. When you are going through the medical rat maze of trials and tests, and ALS is among the possible exits, THEY TELL YOU ABOUT THE DISEASE. If you didn't know about it already, THEY TELL YOU WHAT IT IS. When you narrow it down, THEY TELL YOU A LOT MORE. If you don't do the sensible fucking thing and research it yourself, there are medically trained professionals who will talk to you about it. THE PROCESS OF DIAGNOSIS COMES WITH AN EDUCATION. And here's something I did NOT know. When you are diagnosed? THEY GIVE YOU BOOKS ABOUT IT. Seriously. Like, six of them. My diagnosis came with an appointment with a social worker, and she had books for me, a book for the people who would be my caregivers, and pamphlets about estate laws and wills and power of attorney. People bend over BACKWARDS to tell you anything you could possibly want to know. And by "people" I mean TRAINED AND LICENCED MEDICAL PROFESSIONALS and not "some stupid opinionated bitch on the internet." So let me be the first and hopefully last to let you know, you're not helping. You're not wise. You're obnoxious, detrimental to my emotional well being, and a waste of my time. It alllllllllllllll goes back to the Silk circle, and the magic phrase: "I'm sorry this is happening." Comfort in. Otherwise shut the fuck up. And if you make the mistake of telling me "it's going to get worse" to my face, I will obligingly tell you all of this in person. And just when you think I'm done yelling? It's going to get worse.

Care and Feeding of Your Center Circle

This one’s important. It was hard for me to originally write this up. You can skip everything else if you want, I’m pretty boring, but if you feel like you want to support me through this shit, then this is what I need you to know.  The tl;dr is at the end in bold, you can skip to there if you want to.

I’m a big fan of optimism. I am a very (obnoxiously) optimistic person. There is, however, a thin line between optimism and denial, and I skirt that line every day. In order to do a proper advance directive, I need to dip my toes in the other pool. The one that says I am going to end up in a wheelchair and then hospice and then I’m going to die. I need to think about how I want to handle all of those things from a practical standpoint, and at what point do I really think I want to be done with it? What is my timeline? And when things get bad, who can I rely on? Who am I going to burden with taking care of what? And in order to do all of this, I need to be allowed to be sad. I need to be allowed to really, truly feel the panic of knowing I’m going to die. To know that I’m going to be trapped in a meat shell with a clear mind. And that fucking SUCKS. I need to deal with that grief and mourn who I will never be allowed to be, in order to get past that and make rational decisions.

There’s gonna be a lot of crying. And anger. And despair. And I need to be allowed to do that, on my own, without interference. I know that you want – NEED – to be here for me. But I hate being a burden and I’m really bad about reaching out for help when I need it. I don’t like seeing people I care about in distress, especially when I’m the cause of it – whether or not I can help being the cause. Believe me, I’d love to not have anyone have to worry about this. I really, really would.  And part of my inability/unwillingness to reach out for help is my stupid avoidant bullshit. Because I don’t want to cause drama, I am allergic to awkward situations, and even worse is when I reach out for help and don’t get what I need.

So let me help you out, and help myself by doing so, and maybe help some other people going through serious shit and need support. I’m going to give you a phrase. Use it liberally.

“I’m really sorry that this is happening. It must be really difficult.”

That’s it. Or some close variant. Acknowledge my suffering, and empathize. I don’t need “everything’s going to be okay!” or “it could be worse!” or “hopefully it won’t actually come to that!” Sometimes, often times , I don’t need an uplift. I just need someone to know that it hurts, and it’s hard. That’s all. I don’t need you to solve the problem for me. I don’t need to be rescued. I don’t need to be cheered up or distracted. When I want those things, I will ask for that specifically. If I reach out, if I say, “I’m having a really hard time right now and I need support for a bit,” I just want you to listen to me for a little bit and then say “I’m really sorry that this is happening. It must be really difficult.” If I say, “I’m having a really shitty time, I need a happy distraction,” THAT is the time to pull out the anime and kittens or whatever. If I trust you enough to tell you I need you there for me, I just need you to hear me, and agree that it is shitty. 

Also? KNOW that I am shit at reaching out. Maybe check up on me once in awhile. Just “hey, how are you holding up?” once in awhile. I’ll tell you what I feel like telling you. And this is important, so I’m putting it in a line all to itself:

Don’t fucking ride my case if I tell you after the fact that I had a hard time because I didn’t call you. 

This is a very important one. Because it will sincerely piss me off. Chiding me for failing to call you feels like you’re vilifying me for my own suffering. Don’t do this to me ever. Just tell me that option is available. “If it happens again and you need someone, I’m available.” not “You should have called me.” I mention this specifically because I kind of got in a fight with a friend over this, and it caused me to be pretty unkind to him. Disclaimer: I GET it, that’s how he is, he is like me and uses goofy kid words, and jokes to make a serious thing lighter. It’s why we’re the best of friends and I love him a lot. (I do love you. But holy shit this was the exact wrong thing to say at that precise moment.) But when your best friend – who is dealing with some serious, maybe life-threatening shit – tells you that she had a really rough week last week and she’s kind of in a weird headspace, this is NOT how to respond:

“Erg. No good! Why didn’t you call me! I mean, I know I can’t help balance the chemicals in your body out, but I could have given you a shoulder and some distraction! You were a naughty sad-face!”

Naughty. Motherfucking. Sad-face.

I didn’t ASK for a shoulder because I didn’t WANT one. I KNEW that it was chemical depression, that week, because I was on a new medication and it was seriously fucking with me. And when the real crying happens, it needs to be PRIVATE and PERSONAL so that I allow myself to just BE without worrying about how I’m distressing someone else. I did not WANT a distraction. I would have asked for one. And unfortunately, I’m probably going to be LESS likely to call on him, because he treated me like a fucking three year old when I said I was sad. Like I’m not able enough to handle my own shit, I have to have adult supervision. An adult that chides me with toddler words.  He also threatened to start randomly coming over to check on me if I didn’t reach out more.

…Don’t ever do that to me. Even when things are going great. I fucking HATE surprise social situations. Being an introvert AND an avoidant personality makes me allergic to surprise social situations. I will be gracious to your face when you show up, and hate you a little bit while you’re here, and be very, very resentful when you leave. Also so much less likely to call on you when I do need to reach out to someone. I promise you that it would NOT go over well. Because it never has.

I have been told that I should reach out and call because the thought of me crying my face off by myself is a depressing thought. Which is a really sweet sentiment, I get that you are concerned about me , but that statement makes the whole thing about YOU, and reaching out when I’m like that may be impossible and probably counterproductive. I can not be honest and open with my own feelings when I know I have a witness. I just can’t. I can sort out for myself what the fuck I’m feeling and then express that to you later, but when I am experiencing them for the first time, I need to do it privately. Maybe it hurts you to think that I was suffering alone (again, this isn’t really about me, it’s about you – and it feels like you’re using it against me as emotional blackmail). And when I apologize for making you really sad and uncomfortable with my conversation, don’t tell me “not hanging out with you and feeling like you are having to deal with everything on your own makes me even more sad and uncomfortable”.

Because sometimes it’s not about you.

In fact, this is NOT about you. At all. This is about me. Center motherfucking circle.

I need to be free to not give a shit that you’re unhappy that I don’t reach out when I’m unhappy. Because if I feel like I need to be alone in my unhappy, then I will BE alone. If I feel like I need a voice, I will call you. And if I don’t want to talk, I won’t. Because it is all. About. Me. Don’t make me feel like I have to alter MY behavior when I’m sad in order to make YOU feel better. I really fucking DON’T. I am allowed to be sad, and cry until I throw up, alone in my room. In the dark. And not call you. I probably wouldn’t be able to make myself understood through the crying, for one. And then on some level, I’m going to feel obligated to pull myself together a little bit because there’s someone else around, which interrupts my grief and makes it less effective catharsis. I need to be allowed to have my mourning alone. When I want to NOT be grieving, when I want to be happier or comforted or distracted, THEN I will call you. But sometimes? A bitch has just got to get her sobs on. It’s part of the whole thing. And the spectacular way that I am psychologically broken means that I need you to back the fuck off and let me do it privately.

I know this is hard for people that care about me. And you have every right to your reactions and your suffering. And I want you to be able to tell me about them without feeling like you’re burdening me about something that’s happening to ME in the first place. I care about you very much and I want to be able to tell you it’s going to be alright, one way or another, because it really is. I promise it’s going to be okay.

But, see, if you are center circle – REGARDLESS of the severity of the problem – and you tell me you just need to talk, I will listen. And I will not make any kind of demands for your time and attention, even if I think – even if I KNOW – you’d be better off for it. I will remind you that I am available if you need me, and say “I’m sorry that this sucks for you too. It must be really frustrating.”

Because that’s what you’re supposed to do.

tl;dr:

It doesn’t hurt to check up on me once in awhile. I have a hard time reaching out.

Don’t chastise me if I don’t reach out when I have a bad night. I don’t necessarily want or even need someone every time.

I know you’re there if I need you. If you feel I need the reminder when I tell you I’m having a hard time, remind me. Don’t fucking mandate it.

DO NOT threaten to just dropping by to check on me unannounced if I don’t start reaching out. I don’t need a goddamned babysitter and I WILL resent you for it.

I will ask for distraction if I need it. Encouragement, if I need it.

Otherwise, “I’m sorry this is happening” is all you need to say.

I can’t control this situation. I can’t control what is happening to me. I can’t control your reactions and your feelings. I can only own how I react and deal with all of these things, and I’m trying to figure all of that out. I’m looking for a therapist for some professional help with this, too, because I don’t have those coping tools. I can’t predict how I’ll react to any given thing. This shit didn’t come with a manual. 

And neither did I, which is why I am telling you all of this.

The Silk Circle Theory vs Sympathy Points

Okay, the first thing I need you to do is go read this:

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

It’s important enough that it lives in my sidebar forever and for all time. I wish this was mandatory training in school when we are children. It would have saved me from accidentally being an asshole and inadvertently causing grief for those I love when they’re having a hard time. The center circle is the Sun, the outer rings are the planets; the closer they are to you, the tighter they’re pulled in to your drama orbit. You radiate pain and complaint, and they absorb it in the name of love and comfort. The Silk Circle theory takes the phrase “it’s not about you” and expands it to include a very simple two-rule set of mandatory behavior. Comfort in, dump out. The end.

I have taken “CENTER CIRCLE, BITCHES” to be kind of a mantra. It’s as much a reminder to the people around me that I need support, not drama, as it is a reminder to myself that it’s okay to be selfish about some things. I do not *have* to consider the feelings of other people when writing up my advance directive. I do not HAVE to be shy about what I honestly want on my bucket list. I do not have to apologize for being the bearer of bad news when people ask me if I’ve figured out what the limping is about yet.

I do not have to participate in my caregivers conversations involving delegating responsibilities. My social worker actually said that it’s best if I’m NOT involved. Just…work that shit out behind the scenes, and I will rely on you as a whole that it is getting done. Because I appointed you as caregiver. Because I trust you.

As center circle, though, I need to be cautious that I don’t burn out the bigger rings. The diagnosis is new. I have some leeway. But I am absolutely NOT allowed to make them miserable by complaining non-stop and insisting that life is All Vashti, All the Time. There are other channels besides ALS SUCKS ASS. The channels that made people tune in to me in the first place.

In addition to the Silk Circle, there are Sympathy Points. I’ve had this belief for more years than I know, it’s something that’s always been true and eventually I figured it out in words. Sympathy Points are a crucial part of any crisis, too. They work like this:

You get ten.

Each instance is one event. One illness, one accident, one breakup, one lost job, one stupid mistake, one whatever it is that puts you in center circle. One instance of you totally losing your shit and you need me to help put you back together. And for each of these ten instances, you have everything that I am capable of giving to you for help. Ten instances where I will give you my absolute sympathy. I will do my UTMOST to help you and fix your problem. Ten instances of me taking the bus to the hospital to sleep in a really uncomfortable plastic chair in your room with a watch timer set to go off so that I wake up to press your morphine button for you so that you can sleep without pain. Ten instances of 2AM phone calls in tears because you can’t believe he left you and I will listen to you even though I have to be up at 5 for a very important presentation at work the next day. Ten emergency showings-up to your house this weekend because you suddenly got evicted and you need to move your shit, like, NOW. Ten instances of me loaning you the content of my savings account because you can’t make your rent because you were sick too often this paycheck.

Sympathy points regenerate, over time. Slowly. You might spend more than ten over our relationship. But if you use them all too fast? Then they’re gone forever. Once they run out, you never get another one. That means I don’t loan you money. I don’t show up at your house with cupcakes and cartoons because she just left you. I don’t take the bus two hours out to your place after work to watch your kid because your babysitter bailed on you. I won’t go out of my way for you at all. Instead, I will pat your back sympathetically and tell you I’m sorry that this is happening to you.

The end.

Because running out of sympathy points means you’re a fucking trauma queen.

Ten is a LOT. And to have ten crises in a short time is very, very hard to do; it’s more likely that you’re not having ten legitimate crises; you’re probably overreacting, or creating the drama for the sake of the drama. Or you just have a really, really shitty outlook on life and take everything as the worst case scenario. Either way, that means you’re toxic. And that means I do not need you in my life.

As center circle, it is my duty to not burn through my sympathy points. This is, as a matter of fact, all about me, but I must be careful to not burn out my support structure. I have an advantage of being automatically inclined to optimism, and I have a buoyant personality by nature. I can’t NOT pay attention to how my actions are affecting other people. On your fifth or sixth time around being Center Circle, you ought to look around and make sure your circles aren’t drawn around yourself for no reason. Make sure you’re not the boy who cried Wolf, make sure you actually need some help instead of just wanting attention, or eventually you’ll discover you’re out of sympathy points and find that there’s no one who gives a shit. Alone in your center circle.

I need to be careful to not kick my planets out of orbit. I need those guys. They’ll forgive the first couple of solar flares, but after awhile, I’ll find only cosmic dust.