Hilarious

While in the company of a good friend, we talked about serious and silly things as I usually do, and found myself devolving into a rant against billionaires. Hoarding that much money should be illegal. No one should ever have a billion dollars in today’s economy, it’s unconscionable. How the hell do you have enough money to literally end world hunger and then just…not?

After awhile, my friend sighed angrily. “It just…makes me sick,” she fumed.

“It’s pretty bad when you’re talking to a terminally ill person and my disease isn’t the most depressing thing,” I agreed.

And then we both laughed and felt better, and THAT is why gallows humor rocks.

My First Death Positivity Experience

When I was very young, barely old enough to even know what death was, I saw a show on PBS about the (still very new to the public at the time) AIDS epidemic. I don’t remember anything else about the show, but there was one segment that stuck with me for the rest of my life.

A man, in a hospital gown, sitting in a wheelchair. He was emaciated, very clearly capital-D-Dying. And he made eye contact with the camera, and then sang a very jaunty song about his own, very eminent demise from the disease. I remembered clearly three things: that it was basically about why you should be kind to him as he was going to die soon (particularly a phrase “forgive me when I’m mean”), a quirky little instrumental break during which he tap danced while sitting in his wheelchair, and the chorus phrase “cause I’ve got less time than you”.

And it stayed with me. I was…let’s see when this was released….ooh. I was 13. I remember clearly thinking that the song was funny, and not being sad for him at all, even though I knew he was going to die, and I knew that he knew it, too. The emergent Spooky Kid in me delighted in how morbid the whole thing was, and i loved the twisted sense of humor, but what resonated with me 30 years later was not the morbidity. I actually admired him for knowing that he was going to die, and having made peace with that, he was able to be so forthright with his needs. Since he knew there was literally nothing he could do about it, he decided to have such a wicked sense of humor about the whole thing. It was a quiet, desperate, dare you not to look away from it strength. LOOK AT ME, I AM DYING AND THERE IS NOTHING ANYONE CAN DO. NOW LAUGH WITH ME. He saw his own pending demise, and owned it. I wanted to be like that, too, if I could. Strong, unafraid, and funny.

The image of the tap-dancing dying man never left me, and indeed after my diagnosis, any time I prioritized my own needs over those of someone with a muddier, less terminal future, the chorus would pop into my head. I justified inconveniencing people (whether they actually felt inconvenienced or not was irrelevant to my broken brain) with a jaunty internal chorus of “cause I’ve got less time than you”.

I finally remembered to look for it online, not really expecting to find it. It was (exactly!) 30 years ago, pre-internet, and all I had to go on was “man in wheelchair AIDS song less time than you”. But I did find it. It took some doing to find an actual video (especially one that wasn’t an impossible-to-understand audience recorded live version), but my Google-fu is strong. His name was Rodney Price, and he died two weeks after filming this. He is my role model to aspire to while dying today, and he was my very first Death Positive Hero.

I give you Rodney Price, “Song From An Angel”.

Welcome New Readers!

O hai.

Today is my last day of work, before a three week vacation and then MLOA. I sent out an email to my coworkers with a link to this blog, in case they wanted to keep up with how I’m doing. I got a lot of questions asking how they can help, and so I was brave and gave out this link. You can help by listening to my story, by learning about ALS, by becoming part of the Death Positive community, maybe by sliding a few bucks to my crowdrise fundraiser on the left there.

Thing is, yesterday was a Very Not Good Day and it required a verrrrrrrry swear-laden rant, and I didn’t want that to be peoples’ introduction to this blog. So here instead are a few of my favorite positive entries to get you started.

My diagnosis story:

The Road to Diagnosis, Part One

Death Positivity:

Death Cafe

The Walk to Defeat ALS:

This is What A Lucky Girl Looks Like

How Intel can improve the lives of people with ALS:

Talking the Talk

What an ALS Clinic Day is like:

Let’s Get Clinical! Clinical!

So, if you’re new here, welcome. I hope you find this somewhat educational, maybe entertaining a little bit. There are a lot of useful resources on grief, death, and dying up there, too. I hope you like it here.

Here’s another excellent primer

Caitlin Doughty is a mortician. I can go on about this woman, about her job, the relationship we as a society have with her job, buuuuut I won’t. Not yet anyway. BUT I agree with her views, she’s entertaining, and I love her a lot.

She has a video about how to deal with grief. Specifically, how to talk to someone who is grieving. It’s good advice when dealing with people going through terrible times in general.

Madam, My Card.

OK kids, quick diversion. This is something I wanted to do for a little while now and I finally got my act together to make it happen.

*squee*

I have calling cards now! I’ve had a lot of occasions where I’m talking to someone about my blog, and it’s not QUITE got enough Google Juice to find by ALSFTS, so I wanted something proper to hand over. “Yeah, I actually wrote all about how I came to the diagnosis and what my symptoms are. It’s at my blog which is..oh hell. Here’s the info.” And then hand over the card like a pro.

Of course I wanted a cheap option, and there are all kinds of sites out there that do the “250 cards! Free!” and then charge you for everything. “Oh, did you want INK on those? Well that’s $5. Gloss? That’s $5. Shipping? Fifteen dollars.” Pffffft. I wound up at Printastic because I found they had the best templates and I’m NOT about to design my own shizz yet, I just wanted something quick. They had the usual free 250 cards thing, but only like two bucks for gloss and then I think 7 for shipping, so it’s not bad at all. I didn’t expect much, something better than a Post-It.

But they actually look really COOL (even if I do say so myself!) and are decent quality, not flimsy or anything. So hooray! Here’s what they look like!

Networking! With Swears!
Madam, my card.

Now if you will excuse me, I’m going to go hand these things out like a BOSS.