Punk Rock Mommy

I’ve been thinking about why I post to this site.

I don’t have cancer. I don’t live with Andrea and Kelly and the kids. And I’m not that different from many of Andrea’s other friends.

But, like Andrea, I really want to write about this experience. Kelly’s post made me realize this. He’s having a rough time, and I don’t really know how he does it. I’d be hard pressed if I had an eight month old. I’d be struggling if I were coparenting five kids that weren’t “mine”. I’d be out of my mind if someone I loved as much as Kelly loves Andrea were suffering and I couldn’t do anything about it. And he’s got all of this. I hope you know, Kelly, how much I love and respect you.

Andrea’s living with cancer, but we’re all having to make sense of what she’s going through and how it affects us.

Last week, when Jesse and Don and I were with Andrea at chemo, her “chemo buddy” Christine was there. There’s one thing that they were supporting each other with and it’s a story that I’ve been thinking about all week. It gets at the heart of why I feel the need to write.

They’ve both had the experience of people telling them things like, “I have a sister who had cancer and she beat it.” Or, “My neighbor’s wife had cancer real bad and these miracle drugs saved her.” Or, “My great uncle Joe’s testicles were the size of grapefruits from tumors. He’s all better now. He’s 105 and training for a triathalon.”

I said things like this to Andrea in the first few weeks. I was worried that she didn’t want to live and that it would impact her recovery. I was in denial and was trying to make things alright. But Andrea, like her buddy Christine, has the kind of cancer you don’t just recover from. Our best hope is that chemo and surgery and radiation and more chemo and more chemo and more chemo will help them to live the lives that they want to live for as long as possible. As Andrea has said, there’s no “remission” for this cancer, there’s only “no evidence of disease”. And it doesn’t help me live alongside Andrea if I’m not accepting this.

That’s a lot to deal with.

It’s made me think about survival versus living. We’ve focused so much – as a culture – on “cancer survivors” that maybe this is why we don’t see people going through chemo. Maybe this is why IBC isn’t discussed as often. We’re still forcing people who are living with cancer into closets. But Andrea has balls the size of Uncle Joe’s and won’t be pushed into a closet.

Like her, I don’t want to just survive this. Yeah, we’ll all get through it. But there’s so much more than that possible. We can live it. And, in the living, carve out some space for one another to figure this out. Carve out some space to support one another. Maybe even carve out some space to make the things that all of us real people go through normal.

This is why I write. It reminds me. And it empowers me. I hope it empowers you. Kurt Vonnegut once said that he wrote to let you know you’re not alone. Knowing his work, I think he also appreciated the company. I know I do, so, please, let’s not go through this alone.

I hope to see many of you this Sunday at the benefit. We need a celebration together. And what better thing to celebrate than Andrea living her life?

Es mejor vivir con miedo que no vivir por miedo

I listened to Voices in the Family today because Andrea was one of the guests, but the entire show spoke to me. Andrea was, of course, fabulous (you could hear her smile!), but the show was a perfect context for discussing this blog.

I’m lucky, in my daily life, to have the kind of communication that was the topic of today’s show. Therapy, my work, and being friends with Andrea (and so many people like her) have given me the willingness to work at the practice of trust and love. Practice and willingness are at the heart of hearing and telling our stories, of course, since, as “Dr. Dan” said, none of us knows what we’re doing.

Despite practice, I still sometimes fear and presume that “others” won’t understand. As one caller said, this kind of communication is not consistent with the society in which we live. We are afraid that others won’t be willing or able to hear what we have to say, so we don’t talk. What others have to say scares us, so we won’t listen. If we make jokes about death, people will freak. Our lived experience scares the bejeezus out of us, so we write “Ca” on medical charts.

Anthropologist Mary Douglass, though, reminds us to ask not only what kind of society we have, but what kind of society we want. We create the society we want when we practice living (despite our fears) with trust and love. We have the chance to create the kind of safety that is so important to communication. I am so grateful to Andrea and Jon for this blog, since it gives us such a chance.

When we are able to get past our fear and say what’s on our mind, we’re as blessed as the person who truly hears us. When we are able to let go of our ego and emotions long enough to hear what someone else is telling us, we bless one another in the same way. I am consistently “mutually blessed” by my experiences with others when I give them my trust and love. But this is so often one-on-one, and is rarely experienced in a larger setting. I get to do this in a classroom (and here). That Andrea and all of you are able and willing to do this here (and that Dr. Dan does this on the radio makes me very happy).

Don’t let fear and loathing get you down. And don’t go to Las Vegas and act a fool. Give people your trust and your love and some of them will come around. It’s better to live with fear than to not live because of fear.

The Tao doesn’t take sides;
it gives birth to both good and evil.
The Master doesn’t take sides;
she welcomes both saints and sinners.
…
Hold on to the center.

It takes a lot of faith to be an atheist.

Really.

I mean, there’s all this stuff that happens around you that makes you go, “Man, that’s really coincidental.” Or there’s stuff that’s so completely irreconcilable — like the fact that Andrea is really funny when she talks about her cancer and that something so dreadfully frightening brings us together — that one cannot make sense of it “rationally”.

Like, when I first got clean 15 years ago, I heard people saying “Dude, I’m so glad I’m an addict.” My reaction, so like so many others, was “Whatever, man. This sucks. Can’t get high. Got no excuse for my bull. And I have to hang out with you people all the time.” That didn’t make any sense.

Until I found that my life was much more managable when I stopped trying to be in control of it. I was an addict and, oh, happy coincidence, there were all these other addicts that I could count on.

When I started working with people who were living with HIV/AIDS, I heard the same thing. Having had several years to learn that I was lucky to be an addict, you’d think I would immediately understand it when people told me that, while it sucked to live with HIV/AIDS, it made them stop and appreciate their lives in a way that they couldn’t before.

I knew this. Or I knew something of it. But, since one, coincidentally, only seems to get as much as one can handle at any particular point, I got it piecemeal. I learned first that I wasn’t in control. I learned second that sometimes we can only appreciate light because of darkness and ugliness because of beauty.

When Andrea (who, coincidentally, ended up at the same high school as me, was living next door to me when I moved back to Coral Springs, and moved to back Philly just before me — and less than two miles away) was diagnosed, I was struck again by coincidence and irreconcilable contradiction. The universe was affirming that it was time for me to slow done a bit more and to take more care of the most precious thing I have — the people in my life.

I was godsmacked.

I learned years ago that we don’t get to pick whether our days are filled with light or ugliness, so we need each other. But I only let so many folks in at one time. First addicts. Then people living with HIV/AIDS. Now I get to work daily on remembering how much of a privilege it is to share my life with people like Andrea, Kelly, Alec, Jesse, Tucker, Asa (yeah, even Tucker and Asa), Bailey, Clay, Alys, Orion, Tony, and all of those of you who have known and helped her be the amazing person she is.

You make it hard on an atheist though.

There’s no “Rob Blog-Post” category. So, since I’m not nearly as cute as Bailey, I’ll just identify myself upfront.

When I was seven I asked my mom about death. While my grandparents were Catholic, we didn’t really practice any religion, so I didn’t have the visions of heaven my grandmother did. Worse still, I was severly asthmatic, had been hospitalized several times, and was afraid of what might happen when I died.

My mom, probably after taking a drag off of an ever-present cigarette, told me to “shut up and not ask such silly questions”.

Now, mom was probably drunk and/or high. And I’m thirty-nine and make my own life. I forgave her long ago. But I cannot forget that she was only capable of doing a shitty job of parenting. There are so many examples — going to Disney with her second husband when I was in an oxygen tent at the hospital, nearly putting my six-year-old brother through a plate glass window, leaving my brother and sister and I in a car as she went to get too drunk to drive, or taking my brother and I to St. Vincent’s Home for Boys as a threat whenever we were being boys.

When I met Andrea at fifteen, I immediately had a relationship with her that I couldn’t have with my own siblings. Andrea and I shared the same pain, but hadn’t gone through it together. My siblings and I lived with secrets that we weren’t supposed to talk about, not even with one another. But I could share all of those with Andrea. And she could share hers with me. We talked about our fucked up parents (and surrogate parents) often.

Perhaps this is why, when I watch Andrea — and now Kelly and Tony — with Alec, Jesse, Tucker, Asa, Bailey, and Clay, their punk rock parenting is so healing to me. Andrea gives the parenting that she and I never got. As she says, she’s a steward and her job is to prepare her kids for life as adults. They’re not hers, which makes them that much more precious, because they belong to themselves and to God. Although I don’t have children of my own, every time I’m with a child and I don’t know what to do, I ask myself what Andrea would do. And it always works out.

Someone said to me yesterday that, because I’m a professor and she’s a “single mom with only two years of college”, I must think that she’s “incredibly vapid”. What she didn’t know is that I am in awe of her — the same way I am with Andrea, Kelly, and Tony. I know that I am a great teacher. And I can do a lot to change people’s lives as a professor. But I think most of what I can do is just a pale reflection of what my friends the punk rock parents do every day, all day long. Showing themselves. their children, and those of us lucky enough to know them how to navigate through the world, they change it for the better.