Maria

I should be writing about the San Antonio Breast Cancer Symposium that I attended this week. I learned things, I hugged people, I made new friends, I saw old ones–and we made our voices heard. But that’s not what’s on my heart today. Today, Maria is all I can think about.

Maria Carballo and I met at the Living Beyond Breast Cancer conference last year. She was funny and beautiful and sassy, and I immediately liked her. She was part of a group of us that tried to sneak into the ballroom dancing competition that was happening at the same hotel as the conference (we failed, but we all complimented the dancers on their amazing asses). She sat at the dinner table where we decided to do the die-in at the conference. 

And today she died. She was just 41.

I’ve written before about how much living with metastatic breast cancer is like having AIDS in the early 80’s. But today I’m really feeling it, how the band is marching on, while there is a crisis of women dying and dying and dying. I’ve had three friends die in the last three weeks. I have two more friends in hospice right now. 

And I can’t tell you how many people have told me and my friends this week not to piss off the researchers, not to be too loud, that they’re trying plenty hard enough, that we don’t want to alienate them. That we should be grateful we’re not in the radical mastectomy era anymore, that things are so much better than they used to be, that 6 months of extra life is a major success, that we should be grateful for those 6 months on a toxic treatment that leaves us unable to parent our children, unable to bear children at all. That we aren’t arguing strongly enough and that’s why we’re dying. That we should just join a clinical trial, that if we don’t we can’t expect any breakthroughs, even though we don’t actually qualify for any trials because we have brain mets and we’re too heavily pretreated, and even if we did, we don’t live in New York or Houston or Boston where most of the trials are. 

That there’s exciting research happening on our corpses.

So many excuses for why Maria is dead. Why Michelle is dead. Why Seporah is dead. Why Lisa is dead. Dead. Dead. Dead. Dead. Dead. Dead.

How many more of us have to die before someone does something to stop this? How many more tears must we shed before someone listens? When will the excuses and the patient-blaming end? When will there be a sense of urgency? When will all this death stop?

I don’t know how much more of this my heart can take before it’s permanently broken. Before I can’t pick myself up and keep fighting and fighting and begging for help.

HELP US. PLEASE, PLEASE, PLEASE, SOMEONE HELP US.

October Is Coming…but also in a good way!

I fucking hate Pinktober. It’s everything that is wrong with breast cancer culture. You can put pink on literally anything in the name of “breast cancer awareness” as though that actually saves any lives, and suddenly you’re not a fracking company, you’re a “corporate citizen.” A huge number of the pink ribbon products that appear EVERYWHERE in October give literally zero dollars to breast cancer causes, even awareness ones, and even less give money to actual research or patient support. For me, it’s like the whole world is rubbing it in my face that I’m going to die and becausehalf the country thinks they’re helping by buying pink shit, when they’re actually not. During Pinktober, I feel frustrated, angry, impotent, and full to the brim with grief, for my life being cut short, for the friends I’ve lost, for the friends I will lose.

But this year, October won’t just be a shitshow of making the rest of the world less frightened of a genuinely deadly disease. No, this year, us metsters aren’t going to just sit by and wish it was different. This year, we’re taking it to DC, and I want you to come with us. Yes you, person who has never had breast cancer, and you, person who had early stage disease and will always have a fear of recurrence in the back of your mind. All. Of. You. 

MET UP, an organization dedicated to saving the lives of people with metastatic breast cancer, is hosting a die-in on the west lawn of the US Capitol building, at 11AM on Tuesday, October 13. We’re hoping to have 1430 people there, from all walks of life, to represent the 1430 people who die every day of metastatic breast cancer around the world. We’ll gather at 11, and at noon we’ll lay down, in honor of the 1430 who will die that die, and read a eulogy to them. 

And then the leaders of our movement will sit down with Congressional staffers and ask them for 3 things. The first thing we want is increased funding for cancer research. The percentage of research proposals that get funded by NIH and other federal agencies has decreased substantially. It’s not that all those ideas that aren’t getting funded are bad ideas. It’s that we don’t have the money to pay for them. Which is why we need more money.  And we don’t want to fight with other types of cancer for money–we want more money for everyone. Treatment for metastatic breast cancer is equally as horrific as it is for metastatic lung cancer, metastatic pancreatic cancer, or any other terminal cancer. We’re all in this shitty situation together and we all need more research to save more lives and to make our lives better.

The second thing we want is for 30% of the breast cancer research funds that Congress appropriates to go to metastatic disease. Currently that figure is 7%, despite metastatic breast cancer accounting for nearly all breast cancer deaths. If we have any chance of changing metastatic breast cancer from a death sentence to a life sentence, and from a life sentence to a curable disease, then we need research dollars to go towards saving the lives of the people who are dying.

The third thing we want is for the National Cancer Institute’s SEER database, which tracks the incidence of cancers, to begin tracking when a patient has a metastatic recurrence. There has been a lot of debate (especially lately) about what percentage of people with early stage breast cancer will develop metastatic disease, and the reason there’s been debate about it is because we literally don’t keep track of that. Adding that datapoint to SEER would give us a picture of just how effective or ineffective early detection is, and would help us to better understand which types of breast cancer are more likely to metastasize. All of this helps with ensuring that researchers can focus their efforts where they’ll save the most lives.

Now, I said before that I want you to come to our event, AND I MEAN IT YOU BETTER BE THERE OR I’LL CRY AND CRY. But if you’re in treatment or otherwise can’t make the trip, then I’m going to suggest that you write to your member of Congress and ask them to support these three legislative goals. If you need a model letter that you can personalize, drop me an email at cultofperfectmotherhood@gmail.com and I’ll send you one. I don’t often ask all of you for help, but I do often hear from you guys asking how you can. This is a way you can make a HUGE difference.

We’re asking everyone who’s planning to attend (my plane tickets are bought SQUEEEEEEEEE!!!) to let us know you’re coming at the link below. Or, if you’re not on Facebook, just shoot me an email or tweet at me or something.

https://www.facebook.com/events/912441292131635/

Special bonus to anyone who’s stalking me: I promise to hug each and every one of you who comes to the event. (Unless you’re like my friend Jo, who isn’t a hugger.)

I don’t know if you can tell, but I’m super excited about this event, so spread the word that we’re taking October back and it’s gonna be AWESOME. I’ll see you all on October 13!

Feminist Warrior Fridays: Frida Kahlo

When I was in New York, I spent some time at the Museum of Modern Art, which is an incredible place. I knew that Starry Night was there, but beyond that I didn’t really know what was in their collection–I just knew it was good and I wanted to go see it. So, I walked into a gallery on the 5th floor and I stopped dead in my tracks in front of this painting.

I have loved Friday Kahlo’s art for a long time. She’s like the Betty Friedan of the art world. What do I mean by that? Well, what was radical about Betty was that she spoke the truth of her experience, instead of putting on the happy face that women often feel compelled to show. It’s a radical thing, to speak your truth. And I can’t think of an artist who spoke her truth more than Frida. Which makes her one of us, and worth getting to know.

Frida grew up in Mexico, and when she was a teenager, she was in a horrific accident. She was riding in a bus that slammed into a trolley, and a pole punctured her lower abdomen, and she broke more bones than I can count, including her spine. And she spent the rest of her life enduring surgeries and struggling through pain and surviving with her disability. Surviving, until she couldn’t anymore, and then leaving her art behind her.

And oh, her art! It’s so incredibly raw and beautiful and powerful. She didn’t shy away from her pain, the pain that was always with her, both physical and emotional–she painted it instead. The art world tries to call her art surrealist, but she didn’t like that label and neither do I, because, in her words, “I never painted dreams. I painted my own reality.” This is what feminist art does at its best: it expresses the artist’s reality.

Frida painted things that one simply did not discuss in her day, like her miscarriage, and the suicide of a friend. Her works ripped out her soul from her chest, and showed it to us, and said, “Here I am, beautiful, ugly, and perfect.” I can’t even begin to express how much power is in that, in letting the world see you, YOU, not the make-up version of you, not the job-interview-suit version of you, but YOU. Because you’re fucking gorgeous. We all are.

Frida knew that, and she lived it, and that’s what makes her a feminist warrior.

Feminist Warrior Fridays: Ava Gardner

OK, look, you guys. I know I was all “I’m gonna write about some women who may not seem to fit the definition of a feminist by today’s standards” and y’all were probably thinking, “Neat, it’s gonna be someone who is a little bit conservative but still clearly an advocate for women’s rights.” But when I said “not a feminist by today’s standards,” I actually meant it. And thus I give you one of my favorite women of all time, Ava Gardner.

I became fascinated with Ava when my grandfather told me about meeting her. My grandfather was a chiropractor and early on in his medical career, he worked for a casino hotel in Reno, in the early 1950’s. Frank Sinatra was staying at the hotel, and he had a headache, so they sent my grandfather up to Sinatra’s suite to give him an adjustment, and Ava Gardner was there with Sinatra. My grandfather described Ava thusly: “She was the most beautiful woman I ever saw in person, but she had a mouth on her like a sailor.”

Holy shit, you guys, she’s one of us!

Ava grew up poor in the rural south before being discovered in New York and coming to Hollywood, where she worked very hard to become a famous star. She herself would have readily acknowledged that she was no great actress–she wasn’t a Katherine Hepburn or a Bette Davis or even a Lana Turner. Instead, she was just plain sexy.

And here’s where the pearl clutchers will say “Sexy and untalented? That’s not a feminist!” And that’s where I say FUCK YOU. Ava was a woman trapped in an era where women had almost zero power, particularly in Hollywood. Her first husband, Mickey Rooney, cheated on her almost immediately after they got married, including while she was in the hospital having her appendix out, but she had to get permission from the damn studio to divorce his cheating ass, or risk ruining her career. That’s the world Ava lived in, a world where powerful men could tell her she had to stay married if she wanted to keep her job. Are we going to say “you’re not feminist enough” because she used the one tool she had to gain power–her sex appeal? Are we? Because if we are, we’re assholes.

One way we can express feminism is by crossing the boundaries of what it means to be feminine, because one of the ways patriarchy controls us is by requiring women to adhere to arbitrary, unrealistic standards of femininity. Ava was a boundary-crosser. She fucked who she felt like in an era when women weren’t allowed sexual freedom. And she swore like a sailor, which is still seen as unfeminine in many circles. On top of that, she took the patriarchy’s obsession with women as sex objects and used it for her own personal gain. That’s a pretty dangerous game to play in 1950, and pretty damn subversive.

Was she a perfect person? Hell no! I’m pretty sure if you look up “alcoholic” in the dictionary, there’s a picture of Ava there. But she was a strong woman with a drive to succeed, and I really wish I could have met her. Like Julia, I think we probably would have been good friends.

As always, if there’s a feminist warrior you’d like to see me profile, leave her name in the comments!

Feminist Warrior Fridays: Lucy Burns

You guys, it’s been a long time since I wrote about my pal Julia Ward Howe, whose picture is the one here on this page. I love reading and writing about women from the past, especially if they are people I had not learned about before. Because, first, I love a good story with an interesting heroine, don’t you? And second, I find inspiration when I read about women who did cool stuff. It makes me want to do cool stuff too. So, I am going to do a series of posts on feminist warriors, and I’m going to try to make their stories as interesting as possible for you without just totally making shit up, because truth is usually more interesting than fantasy anyway.

Now, for some of these women, you may say “What the fuck, she is not even remotely a feminist warrior.” That is because my definition of feminist may be different from yours. Let me give you an example. Julia, my pal in the picture, was really into motherhood and family. Some might say that for a large part of her life, she was just a housewife who wrote. If she lived today, people would say, “Wow, she is really into traditional female roles.” But for the era she lived in, she was a badass feminist warrior. Call me crazy, but I think we understand the people of the past best when we understand the context they lived in, instead of based on today’s values. I hope the feminists of the future will look at my life and say “she was ahead of her time” instead of “she was behind our time.”

First up today is the AMAZING Lucy Burns, who nobody would say wasn’t a feminist warrior.

Holy shit, you guys, Lucy was a badass. I don’t even know where to begin with Lucy. I mean, check out this list of colleges she attended. (And no, she didn’t get expelled from them—she went to so many because she wanted to learn ALL THE THINGS.)

Yale University

Columbia University

Oxford University

University of Berlin

University of Bonn

Vassar College

Then she took all that education and said, “Dude, why the fuck don’t women have the vote? This shit is messed up, I’m clearly as smart as these dudes in class with me, and they can vote and I can’t? What in the actual fuck?” So, she joined the women’s suffrage movement, starting in England. Now, if you don’t know much about the suffrage movement, then let me explain about English suffragists. They were hardcore. Like, seriously, those women weren’t fucking around. Lots of them got arrested during the time Lucy was with them, including Lucy herself. Later on, the suffragists in the UK turned seriously violent–they burnt down rich people’s houses, they smashed in shop windows, they sent letter bombs. Lucy had left for America by then, but the idea that you need to show the world you’re serious about your rights was definitely part of Lucy’s belief structure.

Speaking of getting arrested, Lucy met Alice Paul (who was also a badass) when both of them got arrested and were hanging out at the police station, and Lucy was all, “Hey, you’ve got an American flag pin, I’m a yank too!” And then they became BFFs. They went back to America and joined the American suffrage movement, but had trouble convincing the old-timers who were running it, like Carrie Chapman Catt, that they should get hardcore like the British suffragists. So, Lucy and Alice were all “Fuck it, we’ll do it ourselves” and formed their own suffrage organization, eventually called the National Woman’s Party.

And that’s when shit got real. Like, they protested in front of the White House every day, with snarky banners that said stuff like “Kaiser Wilson, take the beam out of your own eye” and threw President Wilson’s own words back at him, like “We shall fight for the things which we have always carried nearest our hearts–for democracy, for the right of those who submit to authority to have a voice in their own governments.” That would be the early 20th century equivalent of throwing down. It pissed the president and his people off enough that they ordered the protesters to be arrested for “obstructing traffic” (which they weren’t, they were on the sidewalk and not even blocking pedestrian traffic).

Lucy got arrested along with lots of other suffragists from the NWP, and organized hunger strikes and protests among the prisoners. The prison officials force-fed her, and handcuffed her with her arms up in the air and left her there overnight, and did all kinds of bad shit to her. Funny, none of that convinced her to change her mind, so when they’d let her out of prison, she’d go right back out and protest again. I think if she was alive today, she’d say “Because fuck you, that’s why.”

Honestly, I don’t think the 19th Amendment would have gotten passed without her. Seriously. And when it passed and she was like “My work here is done” and she withdrew from public life and went to church and hung out with her niece instead. Because I’m pretty sure she’d earned a fucking break, amiright?

Lucy was most famously portrayed by Frances O’Conner in the amazing HBO biopic Iron Jawed Angels. Which was really more about Alice Paul than about Lucy, but was still awesome. Especially the cinematography.

If you’ve got a Feminist Warrior you’d like me to feature on Feminist Warrior Fridays, drop her name in the comments!