Where the Fuck’s My Trophy, Then?

A couple of weeks ago, I got a letter from the ALS Association: “The March of Faces Banner Campaign is a wonderful way to promote ALS awareness. A banner consists of a pictorial display of 20 courageous women and men, both past and present, who have been diagnosed with (ALS)… We are writing to invite you to become part of this important campaign by adding a picture of yourself to the banner.”

It’s an awesome idea, and I’ll participate, of course, if nothing else because I think it’d be awesome to have some girl with piercings and purple hair on their banner alongside all of the typical 50/60 something grandparent types. But there’s one thing about that letter that bothered the hell out of me. Something that’s ALWAYS bothered me when people talk about cancer, or ALS, or any other horrible disease.

There is nothing inherently courageous about being diagnosed with a terminal disease.

I’ve had a bone to pick with this thinking for a LONG time, and it’s especially near and dear to me now that it applies to me, too. ALS is not a qualifier for bravery, world. A kid with cancer is not automatically brave. Bravery and courage is a behavioral CHOICE. I did not have a choice in this. Because if I had? I would have said no. I AM A COWARD AND WOULD HAVE DECLINED, THANKS. BECAUSE I DO NOT WISH TO DIE.

Especially not of something like this.

Not everyone who has a terminal disease is courageous. Some of us spend the remainder of our lives whimpering in the corner. Or punching holes in walls. Not all of us just take it on the chin and carry on. We’re human. We’re weak.

And we’re scared.

Mostly though? Referring to someone as “courageous” just because they have a disease is completely unfair. It sets an expectation on them, that they may or may not feel up to living out. “The brave kids in the childrens’ cancer ward” are scared out of their minds. They shouldn’t have to BE brave, and you’re unjustly setting that burden on them.

It’s like saying SHUT UP AND BE BRAVE, QUIT YOUR WHINING, BE COURAGEOUS SO WE CAN LOOK UP TO YOU AND NOT JUST FEEL SORRY FOR YOU, YOU STUPID CRIPPLE. YOU WANT US TO FEEL BAD? THEN SHUT UP AND BE BRAVE.

The world seems to expect someone with a terminal/chronic illness to behave one of two ways. You can be bitter and weak, or you can be brave. You can never, never be both. You’re either angry and sick, and someone to pity, or you’re brave and courageous, and you’re someone to admire.

Guess what. We don’t need your pity OR your admiration.

The real harm in this thinking, besides the HOLY SHIT CRAZY AMOUNTS OF SELFISH, is that when you fail to be courageous all the time, they become bored with you and your story ceases to be compelling. How dare you be human. YOU ARE SUPPOSED TO BE AN INSPIRATION. YOU ARE BRINGING US DOWN WITH ALL THE CRYING. It’s not about how they appear to you, the reader; it’s a very personal and intense battle against their own bodies, their own hearts, their own faith. I do not have ALS to inspire you to believe in the triumph of the human spirit. The human spirit can go fuck itself. Sideways. And you’re just a casual observer in this fight. You don’t get to pick and choose the qualities that make for a better story. If you’re going to support someone with a chronic or terminal illness, you owe it to them to allow them to be weak, too. You don’t just cheer on a runner at the finish line. That’s not when you need the encouragement the most. You don’t need to be told you’re amazing when you’ve just won. You need to be told waaaaaaaay back at that third turn, there, when your lungs were on fire and your legs were jelly and your mind was a blur of I CAN’T. I CAN’T. I AM GOING TO DIE HERE. I CAN’T. I CAN’T.

I’m doing just fine. I will be brave in parts, and weak in parts, and strong in parts, and soft in parts. Sometimes I’ll scream rage into the void, sometimes I’ll melt quietly in the corner, sometimes I’ll be paralyzed with fear. You’re welcome to observe, but I don’t owe it to you to make myself a plucky heroine in a made-for-TV drama. I’m not in this to be a Reader’s Digest inspirational story. I’m not courageous. I’m just a sassy bitch. So many other people out there have it so much worse, there are so many other more interesting stories to be told. It’s just that I can only tell mine.

It’s the only one I know by heart.