Monday, May 11, 2015

What Not To Say: The Short List

This is one of those posts that should start with an apology. Or at the very least, a weighty disclaimer. Because the awkward--oh. The awkward is an Andy Samberg skit played by Michael Cera dry humping Kristen Stewart that you have to watch while sitting next to your parents on the couch. 
I know.

Last week a line of empathy cards (not sympathy cards) made the rounds on the www, and if you haven't seen them yet, they are genius. Created by Emily McDowell, a designer who battled Hodgkin's lymphoma, she says, "The most difficult part of my illness wasn't losing my hair, or being erroneously called 'sir' by Starbucks baristas, or sickness from the chemo. It was the loneliness and isolation I felt when many of my close friends and family members disappeared because they didn't know what to say, or said the absolute wrong thing without realizing it."

Now I am lucky enough that my community rallied around me with more support than I ever knew possible. There has only been one or two people who disappeared because of whatever reason; otherwise, people I didn't even know well are now lifelong friends. If anything, my illness and treatment has turned me into a people-person, and if you know me, then you know that before this I was more of a stay-at-home-eat-baked-goods-and-give-side-eye-person. So while I experienced little loneliness or isolation, I have been collecting my very favorite stories of "people who say the wrong things" because, let's face it--awkward turns positive the more you point at it and laugh.
This is where the disclaimer is crucial. I have been a sayer of wrong things myself. Exhibit A: when my good friend was in the middle of chemo for cancer I offered to get groceries for her. What do you need? I said, Paper towels? Bananas? Bread? Shampoo? The last word hung in the air like a slap. She was bald. And that's just the one I know about. I am sure I have said a thousand other things that meant well but came out crooked.

I also want to say that this post is not directed at you. Whoever you are. Because I guarantee that almost everyone who knows me has said at least one of these things at some point. And I still love you, or at least like you a lot. I can also guarantee that I would probably say one of these things if I were you. But I'm not. I'm me, and from over here these things sound wrong. Even though I know they are said with the best of intention.
So let's do this.

1. When will you know if the treatment worked?
Hm. Um. Let's see. There is a sliding scale of wrong to this question. That is, if you know me very well and we are having an intimate, real conversation in which it wouldn't be a non sequitur for me to ask you about your deepest fear and expect you to honestly answer, then yeah, valid question. But if you don't know me well and this question is posed during small talk, then no. Just no. So when will you know if it worked? Would you ask a cancer patient when she might know if her chemo worked? 

2. Tell me about your disease/treatment/what happened/prognosis/I've-read-your-blog-but-need-more-explanation/I-went-to-high-school-with-you-and-even-though-we-weren't-close-then-and-haven't-talked-in-20-years-I-want-to-hear-the-story-of-your-diagnosis-oh-yeah-say-it-real-slow-and-sexy-like...
I think that because I blog about so much people expect me to be an open book all the time. At dinner parties, on the street, in the parking lot while trying to find quarters in the bottom of my purse. While I know that most questions come from a good place, sometimes it feels as if people think I owe them something, to entertain them with my health. And I don't want to, or at least I only want to on my terms. However! And this is a big however. If people want more information because I can be of help to them or someone they know with MS and they are curious about HSCT, then yes. I am a dog-eared open book with a clear table of contents and a section thick with thank yous. Not only do I owe you something then, but I owe the world if my experience can help.

3. Every time I look at your face I want to cry.
Yes, someone seriously said this to me, and yes, I still laugh about it. The good news is she later apologized. The bad news is she is not the only one to say this. Just this weekend someone else asked me to tell her the story of my sickness and treatment (see above), and then said she didn't want to cry. (Tip: then don't.)

4. So this is why you sometimes walk funny.
Nothing like pointing out that I walk funny to make me feel good about myself, life and the general state of global environmental politics. Granted, this was said by my friend who I offered shampoo to when she was bald, so touché. The important thing is that she is still one of my very favorite people on earth, so please know that if you have ever said one of these things I probably still like you. Except if I didn't before. In which case. Awkward.
No harm, no foul. 
Happy to help.


Jen said...

I'm the queen of awkward, so all I'm going to say to you is


Anonymous said...

I guess we've all been there, someone I love has been going through a lot, too, and I always worry about making one for the bloopers. It didn't really help that I told the grody dude at the deli that I loved him by accident. Twice. Awk-weeerd. (weirded out emotiji)

Aaron Grover said...

Ha ha. That is great stuff. Having now been on "this" side, I think what I would say is "What do you want to do? Can I take you out somewhere?". Normalcy is something I yearned for at times the first few months after treatment, not HSCT discussions (unless it's with somebody who's considering getting it done).
Hope you are good.

Petunia Face said...

Aaron, you are spot on--all I want is normalcy.

Pretty sure people saying the wrong thing is normal, unfortunately. Although I would take that over not saying anything at all any day!

Thank you all.

e.gray said...

I am bookmarking this and these cards. Cards I wish I'd sent/made/received when going through the shit.
So often, people want to be sympathetic/empathetic but lack the lack the words. Our culture doesn't exactly make it easy when we treat anything other than perfectly healthy in all respects as abnormal. It's the especially sensitive and thoughtful and the folks who have dealt with it in some direct way who know.
But even then, it's hard sometimes to say the right (wrong by standards) thing.
But, with love, necessary.