Tuesday, October 11, 2016

Day 2,220: Don't Die in Fear or Ignorance

Apparently, if one fails to pay attention to one's blog for enough time...such as almost two months...trolls find said blog and begin peppering old posts with comments, mostly of the snake-oil variety in this case. There has to be a special place in hell for people who seek out cancer blogs only to try to sell some "I WAS ALWAYS AFRAID OF BREAST CANCER BUT I GOT IT ANYWAY AND DOCTORS PRESCRIBED CHEMOTHERAPY BUT IT WASN'T UNTIL I CALLED DR HILLARY AND TOOK THESE NATURAL PILLS THAT I WAS CURED 4 LYFE" story. I just deleted about 15 of these comments that have crept into old posts since I last wrote, on my 41st birthday. One of them was even about "weak erections," which I find oddly comforting. I picture this man, with his poorly spelled words and inappropriately excited punctuation, "failing to satisfy his wife" and somehow landing in the annals of the breast cancer blogosphere and feeling at home. We've all had our moments of weakness. It's nice to be needed.

But I digress.

I'm here today, when I haven't been here in such a long time, because someone included the following line in a two paragraph post, complete with email address and phone number, for an herbal supplement GUARANTEED to cure triple negative breast cancer. I was furiously deleting when I saw it:

"Don't Die in Fear or Ignorance."

Ah, yes. Of course. It's really a question of philosophy, isn't it? Is it better to know, or not to know? Is it better to fear things and do them anyway, or never fear and not understand the consequences? Since we all know that death is coming, is it better to think of it often, or not at all?

I'm sure that's what she was getting at, this woman who didn't want me to die in fear.

But because we are who we are, this is the kind of thought that permeates our little household. I wrote last time about how my kids were going away to camp for the first time, to Camp Kesem, which provides a free opportunity to the children of parents who have/had cancer to bond and experience adventure. They dreaded going, and of course, they dreaded leaving.

I saw a change in them both, but my daughter especially, when they came home. She spoke differently, almost like a teenager, she clearly had a crush on one of the college boys who served as a counselor, and all she could talk about for days was camp, and going back, and when she could be a counselor herself. My son clearly loved it, but maybe for different reasons. He didn't seem to find himself so much as he had an opportunity to just play and be crazy without us around for a week. The things he remembered the most were the things they did when they were supposed to be doing something else, like sleeping. I could relate. I always wanted to go to camp, for the freedom from adults more than anything.

But while this was camp, it was no ordinary camp. Every kid there had a life touched, or forever marred, by cancer. I thought briefly about that before sending them, but mostly I was excited about a free week without my children. Gabe and I were like teenagers, going out every night to different bars or restaurants, having sex in the middle of the day, eating pie for breakfast. I'll admit that I didn't really miss them, because I knew I would be seeing them soon, and that they were having an incredible time--as were we.

I did notice something when we arrived at camp to drop them off, however. I stood in this big chaotic room full of people and realized that every adult there either had had cancer or was the spouse or partner of someone who had cancer. I realized that everyone knew this, and no one looked askance at me. The 19 or 20 year old kids--all of whom, I'm sure, have a close connection to cancer themselves, or they would not volunteer their time to this cause--looked at Gabe and I knowing one of us was a cancer survivor, and they didn't even blink.

We were in the place where cancer was normal.

I felt that, and realized I had rarely felt it before. There was no reason to hide nor declare anything about my cancer. It was a fact like the color of my shoes.

Other than that, however, my kids' stories of camp seemed typical of any camp--until my daughter told me about "empowerment." During empowerment, everyone had the opportunity to stand up in front of everyone and tell them why they were at Camp Kesem. I could not believe that my kids actually did this, but apparently, they did. They told me they went up together, but Augie didn't say anything. He let Lenny do the talking--but she wouldn't tell us what she said. She did, however, tell us this:

"Mom, Empowerment was really...sad. A lot of kids there had parents who are dead. One of the boys who was there had his dad die just this summer. He said that he felt lucky, because he had 10 years with his dad, while his one brother only had 8 years and his youngest brother only had 5. Isn't that sad?"

Pause. Such a long pause.

"Well, yes, of course it's sad. I'm sure someone talked to him about it like that, to help him find something positive in it. And it's true. You can think about things in that context. I mean, you're 10. You've already had 10 years with me and I'm not dead yet. I don't appear to be dying anytime soon, though you never know. But it is always sadder for someone else. You can think about luck like that. Sometimes you or your family are the lucky ones and sometimes you aren't."

Gabe looked at me like I was the person who always said the thing that no one should necessarily say, but he loved me anyway. I wondered if I had botched that one, but I don't know how to be a different person than the one I am, so I didn't try to fix it. Then Augie piped in:

"Yeah mom, you could still die. YOU COULD STILL DIE."

He was angry, like I had been holding out on him. I thought he knew that, that he thought about it all the time, but I think being confronted by dozens of kids in real life who had that exact experience made it real for him in a way that made him, well...mad at me. And he's been mad at me in some way ever since. He's been a little bit more incorrigible since camp, and I wasn't sure that was possible. I suppose there could be 100 other reasons, but that seems as likely as one as any. He knew I had cancer. He knew it was bad. He knew it could kill me, even. But I don't think he really knew that meant I wouldn't be there at all, that I would disappear, that he would be a kid with a memory of a parent instead of a parent. And it pissed him off something fierce.

And so there's the question. We all know, but maybe we wish we didn't. There's always a balance of fear and ignorance and stoicism and knowing. There's always someone else who had to learn a harder lesson than you, and not for any reason at all. There's always someone who will know what they know and become introspective, and there's someone else who will know the same thing and become incredibly angry. I don't know what any of that says about any of us--I'm not sure what any of it means.

But I do know one thing. We can all find a way to remain ourselves. And so I answered Augie:

"You're right. I could die. I will die. We all will. But not today. Not yet. So lower your voice. Get out of my kitchen. I have to make dinner."

And instead of scowling, he laughed, and ran off, recognizing me in that moment as the woman who is his mother, not the woman who was.


  1. The perfect thing to say to him. And your writing continues to heal... all of us.

  2. What matters is that Augie knows you; and he knows you so well that he will be able to say 2 things from direct personal experience, even after you're gone (which hopefully won't be for many, many decades):

    1. My mother loved me, and

    2. She was bad-ass.

    And he will beam with pride.

  3. What matters is that Augie knows you; and he knows you so well that he will be able to say 2 things from direct personal experience, even after you're gone (which hopefully won't be for many, many decades):

    1. My mother loved me, and

    2. She was bad-ass.

    And he will beam with pride.