Three weeks, one day. And God knows how many times more I have to repeat this conversation:
“So what are your plans after you leave?”
“Well, for the first two weeks of vacation, I plan to sleep. I’m purposely planning to do absolutely nothing for those first two weeks. It’s going to be GLORIOUS. After that, I’m not really sure. I will probably volunteer somewhere. I will go absolutely crazy with nothing to do for too long. So I’m not sure. I’ll figure it out.”
“Well good luck to you.”
Cue uncomfortable undertones, awkward silence, shuffling to exit the conversation. In reality, here’s how I would like that conversation to go:
“So, what are you going to do after you leave?”
“Die.”
I mean, that is what is going to happen. That is why I’m leaving. I can no longer work because I’m going to die. But because we suck at conversations about dying and death, because our society is so uncomfortable with the mere mention of the D-WORD, in polite society I’m not allowed to say that. Even though we all know it’s true, and no shit, right? Medical retirement; I am leaving because I have a medical condition that is debilitating and ultimately, sooner than we want to admit, terminal. THIS DISEASE IS GOING TO KILL ME DEAD, IS ALREADY KILLING ME, I AM NOT LEAVING BECAUSE I WANT TO.
And so instead, I am forced to have the same inane conversation. And even though they know the real answer, the true answer, I go through the motions and come up with some stupid answer that denies my own impending mortality. I mean, what are they honestly expecting me to say? “Oh, you know, I figured I would take two weeks in the Hamptons. After that, perhaps pursue my scuba certification and do a week in the tropics. Learn a new language. Take up waterskiing maybe. Maybe learn a new vocation. Maybe finally get my baking business off the ground.”
For fucks’ sake. No. I’m going to continue to get my affairs in order, and eventually I am going to fucking die. I am going to keep losing abilities you take for granted, like feeding oneself and scratching your nose and breathing and not peeing your pants. In the meantime, I am going to continue to collect stickers, watch cartoons, and pet my cats until I can’t, and then? I am going to die.
Because ALS is a motherfucking terminal disease.
Three more weeks and one more day of this bullshit conversation replaying itself over and over. Three more weeks and one more day of pretending I’m leaving because I want to, and not because this disease is forcing me to. This has made me extra specially grateful for all of the people with whom I can actually have that frank conversation – the ones who don’t pretend not to notice that my hands are no longer working. The ones who, if they actually asked that question, I could out right tell them “die”. But they know better to ask. Because they already know. So instead they ask how my cats are doing (they’re good!), if I’ve found a house yet (not yet! The housing market in Portland sucks major ass), how well does SSI pay out (not well, but my job has awesome supplemental disability benefits)? Better, more important questions.
Death positivity kids. It’s sorely needed. I crave it like sugar and hugs. I want, I NEED to be able to have these conversations without feeling like I’m intruding on someone’s fragile psyche. Instead of what do I plan to do with my time, like it’s some summer vacation, I would rather people ask me if I have my affairs in order? (Almost!) Do I have a living will? (Yes! And a POLST form!) Do I had support I need the time I have left? (I think so!)
Three weeks and one more day. Before I can get on with the business of dying, instead of pretending like I have some plan for my future.
Because I don’t really have one, anymore.
And you know what? That’s okay. It’s normal. Not everyone gets to see 50. It sucks and it is sad, but it is normal.
Unlike this stilted-ass conversation I keep having with y’all.
Hey WC,
There was an acronym I did not know next to the living will. Can I bravely ask what that is for?
Iwould like to send you some baked stuff if you would like… Let me know.
What are your cat’s names and is a homestead ready for them when you die. There I said it. I’m dying too. It is hard in a society where people don’t want to talk about the obvious.
I’ve learned a lot from you though talking about it. Doing surrogacy helped. I too have a living will. It’s kind of an oxy moron like living but your croaking.
I’m sorry the housing thing sucks. I wish I could live like you everyday it would zap away any complaints.
I am curious because I might need the answer and of course your under no obligation to answer but is it easier for a doctor to say you have X amount of days or not knowing?
I pray for you as I check your blog; wondering if typing is okay for you.
When I was throwing up and peeing I got mad at myself for getting upset knowing what you are going through.
Whoever, is taking care of you closer to the end should put them on you for extra comfort.
I often pray for those closest to you to be brave it’s not easy to witness. Harder to go through.
I think a lot about you not in a creepy stalkerish way but I’ve started writing letters to Brandon my husband. I plan on stashing then when I’m dead so he has something to remember me by.
In a day I often think did I do enough to let the world know someone cares if I died.
I think you are amazingly brave to write out your journey with this monster lingering over you that you either hate or have to make friends with it’s probably both, because it’s your body fighting itself.
I don’t know what to pray for. So I just say your name. I can’t come up with words. I think that’s okay the Big Guy understands.
I’m a little angry with your co-workers they should be bringing meals helping not out of pity but to help just to get to see you.
I guess I’m just that way, in Brandon’s work a girl is having a kidney transplant and I immediately asked if 1. She needed a donor.
2. Can I bake.
It’s not out of pity but it’s not easy cooking when your sick. It’s Im human too.
Well I’m sticking my tongue out at them. Manners are okay but a death party would have been way cooler and more memorable. Life is too dang serious and maybe an ice breaker for them to raise money for you. If they are jerks that’s okay jerks don’t win they die too:)
Hope your cats are good. Do something daring. Like love life in a quiet cafe lol. I dance sometimes on the sidewalks now because life is too short. Yeah people stare, but it’s okay.
It’s your blatant talk about death I have my funeral planned out.
Your Friend,
Elizabeth
<3 o hai!
POLST stands for Physician Orders for Life Sustaining Treatment. Different states have different names for it, but that's what they're called here in Oregon. It is basically an official, doctor-signed Advance Directive. It's legal instruction for doctors on what to do if I have a problem (mine is basically a DNR - Do Not Resuscitate).
My cats are great! I definitely have a plan for them. That was priority One. J, my best friend, will take care of them. He's been threatening to steal my cat Ianto forever; I told J he can literally have him over my dead body. :D
I do love me some baked goods. Yesss.
I'm glad I've inspired you to be death positive! Mission complete. ;) To answer your question..yeah, I'd like to know exactly when/how long I ave. I am a planner AND a procrastinator, so if I knew how long I had to get my shit together, I'd find it useful. As scary as the ALS diagnosis is, I'm grateful to have a set of expectations.