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.

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.


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.