The 5 Most Awesome Things About Being Diagnosed With ALS

Being informed that you’ve got a terminal illness is no doddle in the daisies. In fact, it pretty much sucks. First of all, you just can’t believe that it could happen to you — YOU of all people! Then there are the massive changes to your lifestyle that happen, all kinds of intense emotions, and so on. And, oh god — the relatives and friends’ reactions! Please just hand me a gun (or a mallet, for you non-US citizens), and let me end it now.

But believe it or not there are some real upsides. For example…

#5. You’re relieved of lots of little responsibilities and petty bullshit

Let’s face it: life is stressful. You have to pay the bills on time. You mustn’t forget your wife’s birthday. You have to wear pants. It’s a real drag sometimes. Wouldn’t it be great if you didn’t have so much on your plate? Well congratulations. Now you don’t! OK, well now you suddenly have some other stuff on your plate. Of course there may still be bills to pay and birthdays to remember.

image00Hey man, the doc gave me two weeks. Pants are optional!

But just think about your email account. You protect and maintain it pretty well, don’t you? You probably have an extra email address that you give out just to divert spam from your “real” account. But now you can hand that email address out to anybody that wants it like some skanky truckstop tramp at a Russian hackers’ convention. Let them have your identity — you’re not gonna be using it anymore!


No, it’s ‘felatia UNDERSCORE 69’, not hyphen! Idiots!

And what about those petty conflicts among friends and family? No more listening to long, tedious bitching sessions from your co-worker about how Chad is screwing up his life, and why can’t he just sell off the meth lab, marry the Filipina prostitute he knocked up, and get on with it like a normal person? You now have the ultimate Get-Out-of-Jail-Free card: “Sorry Sandy, I know this is important stuff, but I need to cut you off; the nurse is here to change my colostomy bag.”

You stop caring so much about what others think of you too. The office bully who’s always writing “Go DIE!!!” in the dust on your computer screen in the morning before you come in? “Thank you,” you can now write back. “That is the plan.” Whatever rivalries or other petty interpersonal bullshit you have going on are now laughably trivial.

And not only that…

#4. You no longer have regrets about the past

Why didn’t I study harder in college? If only I’d applied myself, instead of just chasing tail and trying to snort ALL the coke, I’d be a richer and happier man. I’m such a loser. Where did I go wrong?

image05Pachinko. I shoulda stuck with pachinko.

Funny thing is, all this self-absorbed moaning goes right out the window soon after that fateful conversation with the MD.

But wait–shouldn’t it get worse? I mean, now you have almost no time to better yourself, to reach those goals you never reached, to become the super-swell guy (or gal–death isn’t sexist) you always knew you could be if you weren’t always so tired from staying up all night eating Cheetos and watching Mr. Belvedere re-runs. On top of that, it might just be your unbelievably unwise life choices that brought on your current life-ending condition. Shouldn’t you sort of feel, you know, bad, or something?

Actually, your relationship to the past changes. Instead of your past being a humiliating archive of personal fuck-ups constantly reminding you of how you should really get up off the couch, brush off the Cheeto dust, put on some pants, and get cracking on that PhD, the past becomes just what it is. It’s the past. As in, it’s OVER. You can look at it and say, yup, that’s the stuff that happened, and it ain’t gonna unhappen. Even if the past fuck-ups are directly responsible for your current life-ending condition, what does regret or self pity do to improve your present or your future? Not a damn thing.

And speaking of the future…

#3. You no longer worry about the future

One of the hardest parts of living with a fatal condition is that you can’t talk much about the future. In the employee performance review, chatting around the dinner table about the next family trip, planning a tour with your band or a business venture with a colleague, all become awkward when you (or especially they) remember , Oh yeah… That.

Manager: So Ms. Fupps, where do you see yourself in five years?
Ms. Fupps: Hmmm… Dead I guess.   [audience laughs]

But on the other hand, this can be a pretty nice thing too. You can forget about such stress-inducing ruminations as:

Am I gonna get the investment capital I need to build that epic cheese sculpture I’ve been designing? Where is my career headed? Will my plan to make partner by poisoning my nemesis Rob and shining the other partners’ shoes with my tongue pan out? How am I going to find time to do that thing that needs to be done that I’ve been putting off for so long?

image06Tomorrow. Definitely tomorrow.

All those formerly heavy concerns about the future evaporate, and finally…


#2. You realize what’s actually important

Oh man, can you believe that OBAMAAA!?! Did you hear about MONSANTOOO?!? Gay MARRIAGE!!! OMG!!! MOOOZLEMZ!!!


All very worthy topics, which you no longer have to give a flying fuck about. But it’s not just the big, earth-shatteringly important things that you can now serenely disregard. All the little recurring annoyances that you experience inside your own head every day lose a lot of their power too. A month ago you would have nearly clawed the ears off the sides of your head to hear that song come on the radio again today. And other people! How can they just stuff that carcinogenic fast food garbage in their stupid faces all day long? Really, I mean, look at them! AARRRGGGH!

image01Just…just revolting.

But now that song is just a song. A pointless, meaningless, harmless collection of sounds. And other people are like harmless sock puppets moving around doing whatever, and you now realize, perhaps for the first time, that it doesn’t really concern you.

Don’t get me wrong. It’s not that your impending demise makes you apathetic. It’s the opposite in fact. You just realize how you’ve mis-spent your energy on a lot of things, even some worthwhile things, that really don’t have that much to do with what really matters. And the list of things that really matter comes into sharp relief, and it is very short.

This means that rather than tattooing YOLO on your face, strapping on a dildo-nosed clown mask (and nothing else) and laughing maniacally as you hurl urine-filled balloons at the heads of business commuters streaming out of the morning subway, you recognize and focus more intently on taking care of those important things.

If you’re in a job or a relationship that you love, you’ll suddenly love it even more. Each moment of it will become like the treasure that it is. But if you feel even a little ambivalent about it, you’ll want to ditch it as soon as possible. And you should. Your time is now that much more precious. You don’t have time to dick around with anything that doesn’t improve the quality of your life.

But best of all…


#1. You get to know when it’s gonna happen (and maybe how)

Granted, when the doc tells you you’ve got two years, and you’ll most likely go out suffocating on your own saliva, it doesn’t exactly make you want to jump up and dance a little jig. But after it sinks in a little bit you actually feel a sense of relief.

See, basically we’ve all got a fatal condition. It’s called Life, and it ends the same for all of us, in that it…ends. For all of us. And that’s some scary fucked-up shit. But fear of death is not so much fear of the being-dead part, as it is fear of the how’s-it-gonna-happen (and the will-it-involve-fire-ants) part . When you know something terrible will happen, but you don’t know how it’ll play out, or where or when, it can be unbearable. It’s how any good horror or suspense movie earns its stars.

This basic question determines so much of the human condition and activity. It’s the lash that drives us to all manner of greatness: works of art, inventions, social change, finding true love. Also insecurity, nihilism, and horrendous atrocities.

image02Fear of death is the only reasonable explanation for this.

But when you know, you can get ready for it, even if it’s something unthinkably awful. And getting the answer to the question of all questions while you’re still somewhat able-bodied and coherent is like getting the ultimate movie spoiler. You get to know something most others don’t: how it ends. A part of you heaves a sigh of relief, sits back and calmly gets ready for it.

When you have fewer worldly responsibilities, less worry about the past or future, more of a sense of what’s important, and a sense of security because you know how it ends, you are free to notice how special your life is, even the negative parts, and you start to treat it with more care.

image08I’ve cut down some.

The moral of the story should be that all this stuff also applies to people who are NOT going to die soon. But who knows who those people even are? I mean, at least one of you reading this now is going to have your number come up very soon. Isn’t that incredible? I really hope you’re lucky enough to have a few weeks to get your ass in gear and appreciate how special your life is. And even if you’re not about to snuff it, you should totally still do that. You should. Do it now.

Next in Ruminations >

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