Warning: The post that follows is 96% serious. Our usual irregular silliness will resume very shortly.
Things have been weird around here for the past long while, for which I apologize. I appreciate everyone’s support and patience as I’ve been trying to sift through this madness. Towards the end of last year, I got involved with finalizing a very large project which was finally released in January. Most recently, just as we were trying to get back underway, the back end of the site broke which required some updates and black magic to fix.
In between the two, I started a foundation to fight neurodegenerative diseases. And I did this because my mother died.
That’s her in the picture up there–a picture which proves two things. First, my mother is one of the few people who actually managed to make 70s fashion work for her while it was working against most of the rest of humanity. Second, at one point in the distant past, I may actually have been cute.
My mother was an awesome human being. I’m not just saying that because she was my mother. I’m also not just saying that because she had ample opportunity to drown me as a small child and did not follow through on it. (I mean: seriously, you guys, I was a little shit. If today I managed to travel back in time and had to put up with myself as a small child, I would have drowned me and to hell with the temporal consequences.) I’m saying she was awesome because she was kind, caring, selfless to a fault and hilarious. She’s where I get a lot of my sense of humor. Commonly, a conversation would start as follows:
MOM: How are you doing?
ME: I’m doing okay.
MOM. Oh? Since when?
In fact, if you had a chance to meet her, after a few moments of talking to her, I would turn to you and say, “You see? You see where I get it from now?”
Now. Eventually, we are going to conquer death. I firmly believe this. I know that many people say it’s death that gives life meaning. Much like the people who say money can’t buy you happiness, I question the results of their research and demand the opportunity to replicate their experiments myself. I’d like to point out that I am perfectly willing to become a cyborg in order to extend my life and I am also willing to lease happiness if a purchase plan cannot be agreed upon.
My mother, if she had to die, deserved to go out in a Big Way. Saving children from a burning orphanage. Flying a jet fighter into a giant alien spaceship. Staying behind to blow up Bruce Willis and save the world. Something along those lines.
But that’s 2016 for you. In late January, we were in the emergency room because we thought she had had a stroke. And on March 7th, she died.
She hadn’t had a stroke. And you know things are bad when you were wishing for a stroke. She had sporadic Creutzfeldt-Jakob Disease or sCJD. The best way to describe sCJD is that it’s like Mad Cow Disease, but without the cow and even more pissed off. I say specifically “without the cow” because most people who are even aware of it, think you have to eat a bad hamburger in order to get it. That’s the variant form. The sporadic form…anyone could get it. You could. Or I could. Pretty much anybody could.
Very simply put: it’s like a zombie movie in your head. A protein in your brain has a really, really bad day and decides to misfold. And that protein convinces other proteins to misfold. Short story even shorter: this increases until you’re dead. There are theories, but nobody knows why it happens. It affects one in a million people. 300 people in the USA each year get it.
It appears to be an equal opportunity killer…from what I’ve read it doesn’t care where you are or what color you are or what gender you are. There is no cure. There is no treatment. In fact, there’s no solid diagnosis without a brain biopsy. You are simply…fucked.
Three of my four grandparents died of Alzheimer’s, which includes both of my mother’s parents. So we’ve been bracing for that particular beast for a while now. We did not expect its pissed off bigger cousin to show up. In case that timeline got past you…once my mom’s symptoms were recognized, we had about six weeks. Six weeks. By the time they finally had it diagnosed as CJD and we knew for certain it was terminal, I think we had somewhere in the neighborhood of ten days.
We knew from jump that it had to be something in the brain, so I spent those six weeks giving myself a crash course in neurology, reading research studies, talking to people all over the country, talking to doctors, trying to see if there was anything that could be done. And in the end, there wasn’t.
Why am I telling you all of this? Well, it’s partly to explain what the hell happened around here. And it’s partly sort of the same reason I recorded a video about my false positive Hepatitis C tests. If I’ve just experienced something really shitty, I’d like to help someone avoid it. And not just someone else who’s losing someone to CJD. In the arena of “You Are About to Lose Someone Very Important to You,” there are things I wish someone had told me beforehand that I think would have helped. These are they. If you find them useful, then please adapt them for yourself as necessary. And I’m unfortunately sure other people have similar stories and tips, so feel free to share them in the comments.
1. Ask questions, even the ones you don’t know to ask. The first part is easy: if there’s anything you want to know from this person, ask them now. Ideally in this scenario, now = before anything bad happens, but I know we don’t always have that luxury. The second part is trickier: how do you ask a question when you don’t even know what the question is? If I had to do it over, I wish I had done this: six months earlier, gone to my mom and said, “Okay. I know that we’re going to make you a cyborg mom and you’re going to live forever. Granted. But let’s say, just for the sake of argument, that that’s not going to happen. Is there anything you can think of you would want to tell me or you would want me to ask about?” Is this a full proof solution? No. But it’s worth a shot. And it will certainly give you peace further down the line.
2. Get some audio. Download an app onto your phone. Start it recording and put it down somewhere where it will look innocuous. Ask to hear some classic stories. Get them recorded for posterity. If you’re already at the point where you know things are coming to an end, this is going to hurt like hell, but much farther down the line, you’ll be glad you have those things. Sure, they might exist on a cassette tape somewhere or on a VHS tape. Take it from me: you want to be certain you have those stories and her voice preserved and not simply be grateful for the two voicemails you neglected to delete.
3. Keep a journal. Write things down. Things are only going to get more intense and intensity does not equal high resolution memories. Things are going to be said. Things are going to happen. These are things you are going to wish you remembered later. You are not going to remember them if you don’t take note of them. Put a reminder on your phone that says JOURNAL. Then put a reminder two hours later that says I’M NOT KIDDING. JOURNAL. Snooze it, but don’t mark it complete until it is.
The journaling thing is extremely important, because here is something that bugs the living hell out of me: I don’t remember the last thing I said to my mother. Or the last thing she said to me. I was too busy trying to save her and save everybody around her to consider what my Now Self was going to be troubled by. I remember joking with her about my dad and us laughing about it, and that may have been the last time we actually spoke together. But I don’t remember any of the actual words. And later, closer to the end, things had progressed to the point she was non-verbal.
What I do remember is something I hold onto, though. Both her parents helped raise me. I do not remember a time when they were not around. But at the end, they didn’t know who I was. My grandfather kept thinking I was my dad or my uncle. My grandmother didn’t recognize me at all. That was hard enough to take happening with them. My mother, of course, is literally the first person I met in this world. Having her forget me was…an even more horrific idea.
On the occasion I’m recalling, Mom was having an okay day. She couldn’t really talk anymore. I was sitting beside her bed. The bed was tilted up so she was basically in a sitting position. And I wasn’t sure how much of Mom was left, if you know what I mean. So I asked her, “Do you know who I am?”
In response, she made a face, pulled her arm back and quickly smacked me in the forehead with the heel of her hand, as though she was trying to slay me in the spirit. I started laughing. I think I might have been crying a bit too. Because that was 100% my Mom answering my question, words or no words.
So. You see? You see where I get it from now?