First, let’s get this straight: I am not a fan of Sarah Palin. In fact, I disagree with pretty much everything that comes out of her mouth. And I scorn her garbled syntax! But on Thursday, as I escorted a tired Clio from the Jimmy Fund Clinic out through the halls of Dana-Farber and down to our car, the “mama grizzly” phrase she coined kept coming to mind.
Partly because we happen to call Clio “bear” and partly because Clio was, in fact, wearing a bear hat. But mostly because I felt fiercely protective of her. And yet — unlike an actual grizzly bear, or perhaps Sarah Palin herself, had she been in my shoes — somewhat impotent to help her.
Here’s the thing: Whenever we go to the clinic, Clio (along with lots of other young, cute patients, I assume) gets lots of looks and smiles and attempts at chit-chat from people we see while we’re waiting for / in the elevators, waiting in line at the in-house pharmacy, etc. She gets even more attention when she’s wearing her adorable bear hat. If we had a buck for every person who comments on that hat we could handily cover our $12 a pop parking in the Dana-Farber garage.
And she gets even more attention if — as was the case yesterday — she’s wearing a bear hat *and* I’m pushing her in a wheelchair.
Less than an hour earlier, she’d been perky and happy and full of energy. But post-chemo she felt suddenly very tired. And now she was slumped over, pouting, drowsy and bear-hatted in a wheelchair. As we rolled along, people were smiling at us sort of sadly, or telling Clio they liked her hat, or telling me how cute she was and asking how old she was.
While we were waiting at the pharmacy to pick up Clio’s meds there was one family in particular — an elderly Chinese man and woman and their middle-aged daughter — who stared and grinned at her, making funny bear (I think?) gestures, and saying what have been must be the Mandarin equivalent of “who’s a cute little bearsy-wearsy?” The man at one point even came up and pantomimed snapping a picture of her. (?)
I didn’t mind the attention so much, mind you. (Well, OK, those guys were pretty annoying.) I appreciated the kindness, the concern, the sympathy, and in most cases when I explained that she wasn’t feeling well they backed off. But I also sort of wished I could zip Clio away down a freight elevator and out the back door like a movie star.
As I wrote last time, I’ve learned to be a stronger advocate for Clio’s needs and preferences when it comes to her care. Starting with the over-eager med student who came to examine her way back in June, on her second day in the hospital, just before she was officially diagnosed. He got all kootchy-kootchy in her face and kept touching her, ignoring the fact that she was physically cringing. It wasn’t easy for me — because I’m not the most confrontational person, and I don’t like to risk hurting people’s feelings – but I firmly told him to please not touch her or crowd her; it was making her more uncomfortable, not less.
But there are some things that I simply can’t protect Clio from, even though my inner Mama Grizzly wishes I could. Among them, needles, chemo, side effects, and well-meaning strangers.
When we finally made it downstairs to the valet parking waiting area on Thursday, I wheeled Clio to a quiet nook, and pointed her chair away from the other people waiting for their cars. (Who had, of course, smiled kindly and eagerly at us as we approached.) “It gets really annoying having everyone talk about your hat, huh?” I said.
She was clearly upset, and pissed off.
I told her I was sorry, but that there wasn’t a whole lot I could do about it. I told her that the reason people made comments was that they knew she was sick, and wanted to make her feel better. They didn’t know that talking to her, and talking about her hat all the time didn’t make her feel better.
And later, in the car, I told her something that I realized maybe she didn’t realize: that most of the people who said something to her had cancer, too. Or their husbands or wives or parents did. They felt sad or sick or were here to get chemo and blood draws and all the same stuff she did. And the chemo made them feel even worse than it made her feel. And that cancer was harder to cure for many of them. So it probably cheered them up to see a cute kid in a cute hat.
Then I said that although it was a bummer, maybe next time, if she didn’t want quite so much attention, she should pick a different hat to wear.
She considered this. “Maybe I’ll just wear it when I’m with the nurses and the people who know me, and then I’ll take it off.”
I told her that sounded like a pretty good plan. And maybe I’ll see about that freight elevator. Because even without the bear hat, she’s still pretty darned cute.
Meanwhile: so far, this bout of chemo and steroids is proving to be a little bit easier on Clio than last time. She’s got a bit more energy — although more energy to throw little tantrums, too. But we’ll take what we can get.