How to Help in Three Easy Steps!

Howdy folks! Brought on by a recent incident, which I will tell you about in another entry, the question was once again asked, both directly of me and in a general forum:


Maybe you just saw a blind person attempting to cross the street and having a hard time. Maybe it’s a person in a wheelchair having a rough time pulling something off a store shelf. Maybe you just witnessed me try to get up in to a tiny-ass unstable boat and fail miserably in front of Anne Wheaton in Loreto, Mexico. Whatever the incident, there is someone with some obvious difficulty in life trying to do A Thing and you’re not sure how to proceed. Well, as a public service announcement, I’m here to help.

There are three easy steps*.


Seriously, you’d think this was obvious, but the Bystander Effect is a real thing and you’d be appalled at how often no one says or does anything. Don’t be a grandiose dick about it, just approach the person and offer a specific way you can be of help, or ask if there is something you can do. “Hey, can I grab something off the shelf for you?” “Do you want a hand across the street?” “The boat crew clearly have no fucking idea how to get you off the ground, how can I help get you up?” DO NOT – UNDER ANY CIRCUMSTANCES – ENTER PERSONAL SPACE TO HELP WITHOUT ASKING. Hooooly HELL you would think this is common sense, but I wonder how many blind people have someone just fucking grab their arm and start pulling them across the street. Just ..don’t do this. Don’t start trying to haul me to my feet when I’ve had a fall. I need to muster strength for the attempt, for one, and it’s just incredibly invasive to have a stranger start grabbing at you when you’re already at a very vulnerable moment. Politely announce your presence and ask if you can help. And then…


Sometimes the answer will be “No, thanks.” Accept this and move on. This person’s difficulty is not your Heroic Moment; they are not here to provide you with your Good Deed For the Day. They’re just trying to get some shopping done/cross the street/get on the goddamned boat/live their life like a normal person, and are under no obligation whatsoever to accept your help, even if everyone in the world can see it would be so much easier if they’d just get over it and accept the help. Graciously allow them to decline and move on with your day.

Alternately, if they accept your help, Do the Thing. And give zero fucks about it. Don’t make a big show about helping; just grab the whatever for them, help them across the street like it ain’t no thang, whatever. They will say thanks. Tell them it’s no big deal and believe that it is not. I, for one, would be so much more willing to accept simple assistance from strangers if people were extra chill about it, but usually they act like a big damn hero about the whole thing and I’ve suddenly become someone’s Inspiration Porn and I can already HEAR them telling their spouse when they get home about how they helped a woman in a walker pick up her dropped purse. Just pick up the fucking purse and hand it over and go on with your life. You’re not curing cancer, here, you’re just holding a door for someone who can’t walk.

Whichever option was chosen, the next step is the same….


Most important. THE MOST. If it was a routine thing that you might have done for anyone, like opening a door or helping someone get something from a shelf, then it’s already no big deal and a part of life. Move on. If it’s something like a fall recovery or an unexpectedly needed assist (hello, hands suddenly not working so I can’t swipe my own fucking debit card!), then it’s almost certain that the person in need of help is embarrassed by the unwanted attention already. It’s humiliating to fall on your ass even if there isn’t a disability involved. Whether or not there was a celebrity watching. It’s ALWAYS my most fervent desire that the whole thing would be forgotten immediately. This also ties into the whole “I’m not your good deed” ideal, but primarily? I’m embarrassed to have been caught publicly in a weak moment, whether it can be forgiven due to disease or not. Act natural. Make sure they’re okay, and then forget the whole thing. Please. Don’t make some weak-ass joke, or reassure me that it’s okay and natural, just..pretend it never fucking happened in the first place. Whatever’s whatever, man, no big thing, not even worth mentioning. EVER. AGAIN.

That’s it!


The only miiiiiiiinor correction to this may be to ignore that I said no thanks and it turns out I DO need some help. Then you may add RESIST, as in RESIST the temptation to say “I told you so” when I accept that I do need assistance after all. I’m still learning my own limitations, and they change every day. be patient with me in this, and I will be patient with you as you learn The Steps. We’ll help each other out, okay?

*Your mileage may vary. Some disabled people are total assholes about this sort of thing. This is just what I think is most useful, for most people.

Not even going to mince words here.

Fuck everything about this image. Fuck the message it conveys, fuck the people who made it, fuck the president of the stupid fucking website it came from.

suffering is not beautiful
suffering is not beautiful

I’ve ranted about this before. And I will again. Because every time I hear something like this, every time I see something like this, I am filled with a rage indescribable in its intensity. I am sitting here, sobbing, because I’m angry. Because I’m afraid of someone thinking they have the power to make this decision on my behalf. And because I can’t make them understand. Short of committing an act of extreme violence or wishing something horrible to happen to a loved one to present them with the opportunity to reconsider their opinion, I am completely unable to make them understand how fucking HATEFUL this is. I want you to look at a dying woman with inoperable cancer and tell her how lucky she is to participate in the passion of Jesus Christ.

In my rage, I typed, “Let me stick a knife in your guts and then while your stomach acid digests you from the inside out, you can tell me how beautiful your suffering is.”

There is no grace, no beauty, and no “opportunity” inherent in terminal disease. There is nothing beautiful about starving to death because you’re unable to eat. There’s nothing graceful about shitting your bed every day. There’s no opportunity to be found while trapped in a shell of meat you’re unable to control, no opportunity when you’re in a hospital bed wracked with pain that the strongest drugs can’t touch, no opportunity while your memories and self slip away until you’re nothing but a meat robot that looks like someone your friends and relatives used to love.

We FIND grace, beauty, and opportunity in dying because we must. Because we have no choice but to laugh at pain, to smile at death, and to accept. Because we can not fathom a world in which suffering is for nothing and pain has no reason or purpose. And when all hope for life is lost, we find a new hope in allowing an end to the torment. In accepting our own death, at last, we find grace in deciding when your limit is reached, beauty in allowing the suffering to end, and opportunity to end things on your own terms, in your own way, in your own time.

Enjoy the life you live, that you are allowed to have such a hateful opinion because you have no idea what it’s like to be close to someone who wants nothing more than a quick end to their inevitable, pointless suffering. Praise Jesus that you don’t have the opportunity to make this decision for yourself because you’ve still got a life ahead of you. And enjoy that you have the opportunity to think you are entitled to make this decision for others.

Because you don’t.

You really fucking don’t.

“It’s a beastly, undignified business.”

Terry Pratchett died yesterday. He was 66 and suffering from early onset Alzheimer’s disease. He was a brilliant mind, and the world is so much poorer for his absence.

In 2011, three years after his diagnosis, he made a film called Choosing to Die. He met with an extremely British man, Peter Smedley, who had motor neurone disease – known here in the States as ALS. Peter was about the same stage as I am when he chose to die, weakness in his legs that made it difficult to walk and get up out of chairs. He had a very bright mind, and saw clearly the end of his path. He didn’t want his story to end that way, so he went to Switzerland and wrote his own exit. His wife was immaculate and also extremely British and very “keep calm and carry on”. They both kept a very strong face through it all.

I did not expect to actually see the man die.

I am glad they filmed it. It was a very good and honest look at the mechanics of the assisted death. And even though it was hard to watch, I am grateful that he shared his story. It was surreal to see someone at the same stage as I, with the same mindset, take the steps. Earlier than I would ever have. So much earlier. But he knew where he was going and did not want that undignified end, and so he took the poison and his wife stroked his hand and he fell asleep and died.

And he had to go to Switzerland to do it.

I am so, so grateful, again, to live in a state where it’s legal. How anyone can deny someone the right to die comfortably in their own homes on their own terms is quite beyond me.

It is, indeed, a beastly, undignified business.

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.


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.