PREVIVE: The Movement

Storytelling has always been my passion.  Not just any storytelling, but stories that make a difference and compel people to action.  For a long time I thought journalism would be my calling.  But I never enjoyed writing in school, so I picked up my camera instead.  A picture says a thousand words, they say.  And I dreamed that I could capture the world and tell its stories in such a way that would evoke enough empathy and urgency to change our lives for the better.  I would fight injustice with my camera as my weapon.

Never in a million years would I have turned the camera on myself.  What story did I have to share?  Until two years ago, there was nothing unusual about me, as far as I knew.  I was your normal, wigged-out college student, juggling a million commitments and working like a dog to make the grades that would justify all the school loans.  Having grown up in Tennessee and California, I’ve always struggled with an identity crisis that one day epitomized in fat-free grits.  My grits, of course, fell apart.  And my mother even threatened to disown me as a Southern.  After all, what Southerner in their right mind would make cheese grits with non-fat sharp cheddar cheese?  Only one who had been displaced in fat-free Southern California for too long.

So when I learned about my BRCA1 genetic mutation and later decided to have a mastectomy, my first reaction was to write about it.  I wanted to help other young women making difficult decisions about their health, and I felt that I could do so by sharing the intimacies of my own story.  But I also wanted to find a meaningful way to process this life-changing experience for myself.  My grandmother always kept a journal, so maybe I could keep a blog.  What a great way to honor my grandmother, I thought, and to offer my support to other young women taking charge of their health.

A few weeks after I launched my blog, I got an email from an old college friend.  Maureen and I had studied together in a documentary filmmaking class in undergrad. Well, Maureen kept with the trade after college and went on to work with National Geographic and the Discovery Channel.  As it turns out, her father is a distinguished breast surgeon in Texas, so she felt immediately drawn to my story about “previving” breast cancer.  The more she read, the more she thought about my journey from a filmmaker’s perspective.  Maureen eventually wrote me a second time, this time with a proposition: wanna get the cameras rolling?

At first I was hesitant.  I’m infamous for biting off more than I can chew and over-committing myself.  I could already hear my mom in the back of my head, pleading with me to take care of myself and slow down a little bit.  Even if I did create a documentary, where would I begin?  How would I get equipment and find the time to edit?  Nice idea, but there’s no way I could pull it off.  Then I kept reading her email.  Not to worry, Maureen said, she had plenty of friends in the business who would capture my story and capture it well.  Okay then, I thought.  Maybe with her help we could actually do this.  Then I felt the butterflies start to flutter, and I was sold.

We started filming with my medical consultations in early June at Georgetown University Hospital.  I was really nervous for that first shoot.  James, our editor, and his friend Pablo, the camera man, accompanied me and my mom to the doctor appointments with the breast and plastic surgeons.  Before this day, the only men to see my breasts were either doctors or the occasional man I was dating.  But with Pablo behind a high-definition camera, this was very different, and I was nervous.  Plus, Pablo hooked me up with the same microphone that Obama wore the week before for an interview.  So I had Obama on my boob and Pablo capturing everything on camera, including my bare breasts.  Yikes!

But the shoot went smoothly, even better than planned.  At first, I felt really nervous and even a little vulnerable when I unrobed in front of the rolling camera to prepare for my manual breast exam.  After a few minutes, I relaxed and reminded myself that this footage was meant to help other women as they prepare to make difficult decisions about their health.  After all, we decided beforehand to crop the footage to not include my breasts, at least not before surgery.  You can see some of our footage from this day in the trailer for our film, PREVIVE.

I’m still trying to decide whether or not feature my reconstructed breasts in the film.  I don’t want the webisodes or documentary to be pornographic, by any means.  But I want to discard the misnomers surrounding what a mastectomy and reconstruction look like today.  Some women have looked at me with grave suspicion or horror when I tell them about my plans, to have my breasts removed to prevent disease.  Before I tested for my genetic mutation, I also thought that this surgery meant simply chopping off everything, leaving behind ghastly scars that stood as a sore reminder of the disease that robbed women of so much.  This is not the case today, not even close.  In fact, there’s a really neat photography project called The Scar Project where young survivors and previvors of breast cancer bear all.  I’ve felt nothing but empowered since I learned about breast reconstruction, because it was the first time I felt that I could actually defy my destiny and still look the same.  I guess I have a few more months to decide what to do.

In the meantime, we’ve continued filming!  My team accompanied me in July to my medical screenings, where they captured my breast MRI and mammogram on film.  Since we filmed the entire process for both screenings, hopefully this footage will help other women know what to expect.  This weekend, the film crew is coming with me to Los Angeles to document my first meeting with Rebecca, my PinkPal through Bright Pink, and also capture my topless photo shoot with Jen O’Sullivan, my high school photography teacher, mentor and dear friend.  I wanted to photograph my present form before it changes in January, and Jen was excited to help me with this very intimate, emotional project.  It’s going to be a special weekend, and I couldn’t be happier to have the crew with me, capturing every moment along the way.

I’m trying to be as honest with myself as possible, especially now that we’re filming and I’m sharing this experience so publicly, not just in writing.  I try to pep talk myself all the time, but the closer the surgery date gets the more scared I become.  What if I panic and want to back out at the last minute?  Am I really prepared for this big operation and the change that my body will undergo?  I’m starting to get nervous.  But I’ve heard that being scared is synonymous with being brave.  I guess you wouldn’t be scared if you weren’t taking a chance on something, especially something with unknown involved.  I’m not sure how the surgery will turn out, how my scarring will look, and how my body will feel and respond.  So here goes nothing!

I hope that PREVIVE will help other young women and men cope with not only health challenges but with change of any sort.  Knowledge is empowering, though it may not always be easy to swallow and digest.  But I’m eager to offer a very public glimpse into the lives of young “previvor” women as living testimony to the fact that knowledge is forever power.  And that’s just what PREVIVE will do, as the film crew traces each personal step of my journey and that of other young women in the high-risk community as we take advantage of our youth and health to overcome the greatest odds, to beat cancer before it ever gets a chance to beat us.

I’m not the only young woman to tackle a genetic mutation or defy destiny.  There are so many others who have held my hand and continue to support me as I prepare to defeat my risk of breast cancer.  I want to capture their stories, too, because these every-day, courageous women have shown me what loving and choosing life really means.  If you have a story to share about overcoming the odds, not just those of hereditary cancer, please share them with myself and my team and we’ll post your story on our site!  We are each other’s inspiration, and together we can previve.