A New Awkward

This morning, while being wheeled into work (because J is a freaking rockstar of awesome), we met up with a former coworker of ours. This woman is French, and has a super thick accent, and is very sweet. She hadn’t seen me for quite a while, and the walker was new to her.

“Good morneeng, Vashtee, are you okay? Deed you hurt yourself?”

“Oh! Hi! How are you?”

“I am good, but zees walkair, are you okay?”

“Oh. Uh.” I looked at J, who was no help. He was busy trying to get my wheels over the building’s threshold, something we struggle with every morning. “Not…really? I..have ALS.”

Blank look.

“Lou Gehrig’s?”

“I have not haird of zees ALS, what ees eet? Are you going to be ok?”

“It’s…” Ugh. What do I tell her? I’m gonna die, sorry we haven’t seen each other in awhile?
She misinterprets my struggle as reluctance. “Eet’s okay, you don’t ‘ave to talk about eet, eef you don’t want to.”

“Oh, no, no.” I settle for, “It’s a degenerative disease, I’m losing my ability to walk.”

Even that slice of information makes her sad. And it’s awkward. A new kind of awkward, a language barrier, subtleties of tone and subtext kind of awkward. Usually if someone doesn’t recognize the names of my disease, I can say, ‘neurodegenerative’ and they infer the ‘terminal’ part by tone and expression. And then we move on. But she doesn’t understand, and I don’t want to be so crass as to just cheerfully say “I’m dying” as I do with folks I know better, but there aren’t better and simpler words that are gentle. So I leave it there.

Delivering news of a terminal diagnosis is hard. I have complete empathy for doctors, this has to be the shittiest part of their job. But when the diagnosis is yours, and that relative/friend of the patient is a dear friend/relative of yours, not just some professional duty, it’s harder. It’s a strange and terrible combination of delivering devastating news and divulging a horrible secret. And watching the parade of emotions cross your faces, the ‘holy shit this is awful but this is HER dying so I can’t be selfish and grieve on my own behalf I have to be strong for her and not let it phase me but holy GOD, man I can’t believe she is DYING but she’s standing there looking like she’s sorry for ME..’ That part doesn’t get less awkward.

The worst time was when I told Danielle. She started crying, and when I reached over to comfort her, she brushed me off, dismissing her tears with a headshake and “It’s not about you.” I still don’t know what the hell that was supposed to mean. But I never asked.

Delivering the news hasn’t gotten easier. I’ve gotten better vocabulary, gotten a smoother delivery, but telling someone who has English as a secondary language was an all new difficulty level for me. It was an interesting experience.

A new level of awkward.

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?

I guess it does get easier.

Best, easiest breaking of the news so far; ran in to a guy in the cafe who used to be our network guru. He noted the cane I was leaning on.

“What happened, you hurt yourself?”

“Naw, man, Lou Gehrig’s.”

“Oh. …That sucks, I’m sorry.”

“Thanks. I’m alright. How’s the new job?”

“It’s going great! I’m really glad to not be in charge of things anymore.”

And then we dished about network infrastructures and technology and selling houses for ten minutes. And that was all. He asked as we parted if there was anything he could do, I told him I was okay, thanks, but I’d keep him posted. Sometimes the best reaction is just, “Well…shit. Sorry.” and then move on.

The Best Idea for the Worst Times

I love Emily McDowell’s greeting cards. Snarky, realistic, cheesy, and off the wall without being the office lady who wears all purple and warns the new hires, “You’ll have to watch out for me, I’m a little CRAAAZY!” A birthday card that says “Time to put out this tiny fire while you sing a song!” gets points with me. And a very succinct “Aaaaaahhh! You’re Getting Married!” card. It’s like she’s in my brain creating the cards I would make. I’ve loved them since they came to my attention a year or so back.

They’ve launched a new line of empathy cards. They’re amazing.

Most of them are geared towards cancer, but there are a few that would be just fine for the person in your life with ALS. Put lots of money inside.

I just wanted to point out that these exist, and they make me happy, and that I am so glad to see that there are people out there who get it, making products for those who maybe don’t. Including the simple, “There is no good card for this. I’m so sorry.” It rocks that people in outer circles have options to say when they have no words.

Bad Days

I’m having a bad day.

Some days are fine, some days are normal, and some days it all just fucking gets to me.

I found out today that a dear friend has stage 4 cancer and was given 4 – 8 weeks. Maybe 9 months with chemo. And he and his wife are wonderful, amazing people and they don’t deserve this at all and just, just..

FUCK.

And I offered what assistance I can offer, what I’ve learned about the bureaucracy of dying, and just..fuck, man. It’s been weird and wonderful to watch the sudden outpouring of love on them, see the support network spring up ‘out of nowhere’ that I knew was there all along because I’m on the outside of this. Aching because I know the inside and it’s super shitty and they don’t deserve this. Angry, so fucking ANGRY that this is happening and I am powerless to stop it. And I know that panic, and that scramble, and that wait wait wait while you know time is ticking. I didn’t deserve this. They definitely do not deserve this.

No one does. No one ever deserves to be told they’ll be dead in a year. Or soon. The roadmap to life is complicated and strange, and it’s unexpectedly horrifying to see the end of that journey, and count the mile markers on that road. And sometimes you ride in the car and the scenery is pretty and you space out and things are okay. And sometimes, like today, there are potholes and horrific accidents and you just want to pull the fuck over and breathe for a minute, but you can’t. The car keeps driving. Time keeps ticking.

And so sometimes, like today, you lock yourself in the bathroom at work and cry for a little bit. About your friends, but about you, too. About everything. And then on the way home, you buy all of the junk food and sit in front of your computer and eat everything bad for you and play Skyrim and try to tune it out for awhile. Tomorrow will be better. But today is a bad day.

I think bad days are an evil gift, because they give you permission to fall apart for a while. It’s like a valve release, or some days like a punctured balloon. Permission, a reason, an excuse to just completely lose your shit and release all of the FUCK THIS SHIT IT SUCKS SO BAD FUCK EVERYTHING WHY THE FUCK IS IT HAPPENING THIS IS SO FUCKING UNFAIR and embrace the grief and face it down and acknowledge it, and then put your big girl panties back on and live your life. Tomorrow. Until the next time. And the bad days are cathartic and good, and yeah. Necessary, maybe. But it sucks to be having one, feeling like you’re in a nightmare and it’s going to get so much worse. Knowing I’ll feel better tomorrow does not help me tonight, as I eat birthday cake Oreos and cry in my now-practically empty office in a house I don’t get to stay in while my digital persona steals from random barrels and kills skeevers and dragons. Pretending that the world can stop for a bit, committing yourself to losing a night to escapism because it was a bad day. As though it somehow makes up for it when all it does is cost me more precious time.

Just..bad day. Tomorrow will resume my usual dealing-with-grace and optimism and humor. But tonight it all just sucks so much ass. And while it’s okay, normal, expected to have days like this, it feels unnatural and awful and I don’t like BEING sad and angry and pessimistic. It’s not me. I hate this. I hate being emo, I hate that people I love are going through trauma, I hate that I don’t always have the strength and grace to smile. I hate that I can’t always find humor in the dark. Especially when it’s darkness around people I love. I hate this.

I hate bad days.

No Comment.

My local news did a story on a theoretical link between my employer and ALS. I declined to be a part of the story.

After seeing the report, I am certain I made the right decision to refuse to be a part of it.

They used my photo without permission, which is really annoying.

That’s all I have to say publicly about it.

Talking to Strangers

I was on vacation in Leavenworth this weekend. It was partly to celebrate Danielle’s birthday (which is tomorrow, November 4th) and partly because we’ve been itching for a road trip awhile and a birthday was a good excuse. My weakness reined us in, for sure, but it’s a small town so we didn’t have to compromise much. There were three instances in which I told a total stranger about having ALS, the first being the woman who checked us in to the hotel apologetic as hell because our room was on the third floor when she saw I was using a cane. She asked what happened, had I broken my leg? She was very sympathetic when I told her of my diagnosis, and a little bit baffled because I was so young. She knew about ALS because of the Ice Bucket Challenge (I FUCKING LOVE THE ICE BUCKET CHALLENGE); she was very willing to be as accommodating as she could to help my stay be as easy as possible.

And the other two were on opposite sides of the spectrum.

++++++

One:

Danielle’s dropped me off at a shop to wait for her to park, because she has to park kind of far. (She wound up actually just parking at our hotel and walking the four blocks) I sat on a bench in front of the spice and tea shop we’re going to check out, and after a little while, an older woman with a walker approached. I asked if she’d like to sit, and scootched over to make room for her. I had been in the middle of adjusting my braces, because I’d left some velcro exposed (still haven’t made my straps, dammit) and it was catching on my socks. She asked what they were for, did I hurt myself? I told her that I had ALS, clarifying Lou Gehrig’s when her face was blanked.

“Oh. I’m so, so sorry,” she told me, with genuine sympathy.

“Thank you,” I told her sincerely. “I’m doing very well, though. It’s going to be okay.”

She was silent for awhile. “To tell you the truth,” she says quietly, “I wish to God it was me instead of you. You’re too young.”

I looked over at her and realized then that she was very near to crying. Her eyes were brimming with tears and she had a faraway look. “Oh, sweetie, I’m okay, I PROMISE,” I told her quickly. “My progression is so slow. Nothing hurts. I’m okay, it’s alright.”

She asked how old I was, and repeated “too young” when I told her. We introduced ourselves to each other, her name was Sheila. She asked a little bit about my progression, my symptoms, what my support structure was like. She agreed in the end that I was in the best possible situation and seemed mollified, but still upset. Danielle showed up then, and we said goodbye.

Once we were in the store, I said quietly, sheepishly, “I just made a total stranger cry.”

Two:

We stopped on the way home, randomly, in Goldendale, Washington. Because we needed a pee break and we’d never been there before. We discovered an honest to god observatory, saw some deer in a graveyard, and then Danielle saw a bookshop and wanted to go in. The book store turned out to be an Everything Store – the guy had literally everything. Books, jewelry, games, toys, fishing gear, light bulbs, office supplies, plumbing gaskets, literally everything. The shopkeep was named Dan, and came out when he heard us come in.

“Good morning,” he said cheerfully. “How are you today?”

“Fantastic,” I told him, “you?”

“Wellllll I was GONNA say ‘hobbling along’, but saw your cane and thought better not.”

I laughed and told him it would have been alright. He told me to have a look around and tell him if I needed help finding anything, he probably has it. After looking around a bit, I conceded, “You really DO have a little bit of everything.”

I stood at the counter while Danielle looked around. He looked over to me. “If you don’t mind me asking, what happened? Is it an injury? Something you were born with?”

“ALS,” I told him, “Lou Gehrig’s – recently diagnosed.”

“Oh, I’m sorry,” he said.

I gave him what is now my standard, “Thank you. I’m doing really well, though.”

And after awhile he smiled and said, “You know, I can tell. You’re going to be okay, you’re handling this great. You have a very bright spirit. You’re handling this with the right attitude; you’re gonna be fine. Nothing’s gonna get you down.”

I grinned and told him he was absolutely right. I have the slowest progression, the best support network, and the most amazing friend in Danielle. “That’s the right way to be about it,” he said.

We introduced ourselves, and had a little chat about the origin of my name, he told Danielle and I about the apartment he had in the basement of the store for his kid (“I didn’t want him living at home”) that his son never moved in to, his other property in a town of 93 people, the work he does on it. We chatted about a whole lot of little things while Danielle figured out what she wanted to buy. I bought some Topps stickers – because I’d been on vacation 3 days and hadn’t bought ANY – and instead of selling me five packs for $10, he asked if I’d like to buy the whole box for $15. I said heck yes. We said our goodbyes with a promise to stop in again if we were in the neighborhood. He repeated his complete confidence that I was going to handle this just fine.

We left the shop, and I was in a great mood.

++++++

Both reactions were sincere, neither was an incorrect way to behave. Your reactions are entirely your own. The only ways you could possibly screw it up when I tell you about my disease is to a) gasp and tell me it’s SUCH an awful disease and it’s going to get so much worse, or b) tell me it’s my own fault somehow for a life of sin or something. Or laugh. That would be pretty bizarre and awful of you.

Both reactions sincerely touched me. One left me troubled, one left me buoyant. Neither of my reactions are the responsibility of the person invoking them. I have a hard time accepting the inverse, though. When I tell someone about the diagnosis, and it predictably troubles them, I feel guilty and responsible for bringing them down. It’s not my fault. And it’s not her fault that her deep sadness troubled me so much. It was not his job to cheer me up. And it’s not my responsibility to sugar coat or put a smiley face on a terrible situation.

It is not my responsibility, but it is my nature. And I could tell it was his, too. He and I are of the same “Fuck it, it’s gonna be alright” mentality.

And sometimes, I’m of her mindset, too. This is terrible, I feel helpless, I wish I could change it.

Both reactions are correct and useful, in their own turn. And I’m happy to have met both of them, this weekend. It’s put words to perspective, and both of them were very sweet people and I’m glad they spoke the words they did. It means the world to me, to know I’m not alone when I’m sad, and to know there are cheerleaders who have got my back when things look awesome.

Even when – especially when – that support is from complete strangers.

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.