A New Conversation

Five years ago, we started the Of Scars project in order to start a conversation. There were injustices in the way that people were failing to respect the scars – emotional and physical – of surviving breast cancer. Women being banned from gyms for indecent exposure when their swimsuits wouldn’t fit comfortably over mastectomy scars and they chose unconventional options. Women feeling the need to hide away in closets to change their clothes where even their husbands couldn’t, and wouldn’t go. There were women being left by men who thought that cancer was “too hard” to deal with.

We didn’t know it at the time, but we were living in the time of Breast Cancer Awareness 1.0, where “awareness” simply meant that you understood that women were dying of this horrible disease and that something needed to be done. And at the time, it was critically important and the actions that were taken saved lives. What we also didn’t know was that by continuing from that point to push the conversation forward, we would be on the wave of Breast Cancer 2.0 – where we’re past knowing that the disease exists and that women are dying, and we find that women are surviving, and that it takes support for them to survive well.

Let me say that again.

It takes support for women surviving breast cancer to survive well.

We learned that survivors become survivors the minute they are diagnosed, and that it takes a team of supporters to love them and help them and to tell them the truth, in order for them to live well and to learn to accept their new reality.

Cancer changes you, forever. we’ve learned this. Over the last five years we have heard the stories, we have cried the tears. We have gotten right into the mix and helped to spread the conversation about it, we have helped people to embrace the fact that it’s okay to talk about it.

We’ve learned more than we could have ever dreamed of, when we first helped to start this conversation, and we didn’t start it alone. We started where we were standing, in our community, and other people have started where they are standing, in their communities. We’ve seen projects similar to ours crop up all over the globe.

The conversation is happening. The conversation is strong enough to continue.

We want to help feed new conversations in our community, and we know where to start. The next conversation is a really confusing issue that we encountered in our five years of working on Of Scars – an issue we want to explore and maybe even get to the bottom of. One that almost no one is immune to, whether they admit it or not.

It’s about self acceptance. It’s the root of what we have stood for in the Of Scars project. Women who felt imperfect or scarred or even just different stood in front of our cameras for five years and each and every one of them reached some new level of self acceptance. Even if it wasn’t a total transformation, some part of them became more comfortable and self-accepting.

Through the years I’ve wondered the same thing, over and over: would I do this project, if I were on the other side of the camera? I’ve never been able to give myself an honest answer – I don’t think it’s something I could possibly answer without having to truly decide that, and I sincerely hope I’m never in that position. I know that if I chose to do it, I would have the same issue many of the women we have worked with have had. I can’t tell you how many times I heard, “shoot whatever you want of my boobs but please, make me look thin.”

I struggle with this, every day. I put so much energy into actively not accepting my body that some days it just makes me exhausted and angry. I have absolutely no idea how to truly accept my body for what it is, and I know I’m not the only one.

Yet, in spite of this – or maybe because of it, we are living in the era of selfies. But not natural selfies – they are posed, styled, filtered and manipulated. What do we look like anymore? If we don’t take an honest look, will we just be getting farther from truly accepting ourselves, as-is?

We also want to discover some of the thought that leads to the ability to wholeheartedly accept one part of yourself, and so actively reject another part. If we can find some patterns, perhaps we can share some ideas to broaden our self acceptance.

Let us know if you want to be part of this new project – you can reach out through the ways you have contacted us on the Of Scars project. You know where to find us.

We are going to pause pursuing new work on the Scars project and take a time out on hosting the meetings and events we have been doing. This doesn’t mean the project disappears, only that it goes on holiday while we focus our efforts and time on a new conversation.

We are SO grateful for the opportunity we’ve had to help usher Breast Cancer Awareness 2.0 into the world, and our hearts turn to mush when we think of the generosity and openness of everyone who has participated in and supported the project these last 5 years. I know I echo Kate’s feelings as well when I say that this project has truly changed my life for the better, and I couldn’t be prouder of what we have all accomplished together.

judyblume

Breast Impressions of my Childhood Hero, and Wishes for a Swift Recovery

 

I was an unstoppable bookworm as a child, and at the core of my essential reading was anything by Judy Blume.  Blume came to popularity more than a decade before I was ready for her, but the occasional confusing pop-culture reference didn’t matter in the face of a greater truth: her work made me feel normal.

Tales of a Fourth Grade Nothing was my coping mechanism when I found myself a lonely fourth-grader after moving to a new school in a new town. Otherwise Known as Sheila the Great helped me to understand that I wasn’t the only kid who was afraid of stuff. Then there was Are You There, God? It’s Me, Margaret . 

It was hard for me to talk about my body growing up, and though I struggled with body image issues as I navigated through childhood and into puberty, I didn’t feel like there was anyone I could ask about things. Breasts, after all, were “private parts,” and modesty dictated that they should be discussed only with a physician, and even then probably only at gunpoint. Imagine my mortification with the other changes that were happening.

The fifth grade book fair was a game-changer. That’s when I took my own cash and ponied up for a paperback copy of Are You There, God? It’s Me, Margaret. Margaret was working through all kinds of issues, from her quest to find her spirituality to the mind-warp that is puberty. And she talked about it. She talked about periods, and about sanitary napkins, and about buying bras. Margaret even played spin-the-bottle, and did exercises in the effort to help her breasts grow. It was so scandalous. I wondered if my mother would let me finish the book, if she knew.

For the first time, I understood that growing up is an impossibly awkward business, and that the only way to survive it was simply to wake up every day and embrace it. I decided not to get swept up in the nonsense of it. I bought a plain white t-shirt that said “I am a nerd” in Courier font, and I wore it to my first day of middle school, confident that I was not alone.

Thank you Judy.

On her blog this morning, Judy Blume revealed a story that is perhaps far more personal to her than those I read as a child: her own breast cancer diagnosis. I am in awe of this childhood hero of mine for the honesty and clarity with which she writes of her own journey, even as she charts her course through these tender weeks post-diagnosis.

Blume wrote, “When it comes to breast cancer you’re not alone, and scary though it is, there’s a network of amazing women to help you through it.”

Keep talking, friends. Your honesty and compassion will help someone else to find his or her own way. You might be the reason someone else discovers that she is not alone.

And Judy? Thanks again.

save the date!

we have chosen a date for our 3rd annual event – please put it on your calendars!
saturday sept. 29th @ the fox egg gallery in south minneapolis.

 

New and Exciting!

As always, this project seems to move at its own pace, in fits and starts. We’ve learned to be okay with this, as both us of have these “job” things that keep us busy and we have to get stuff done when we can.

Even so, we’re gearing up to have a huge year. We’ve met with more prospective models for the 2012 collection than we’ve met with in all of our previous experience combined. We’ve been advised by women in active stages of treatment, women who’ve established new families in the wake of their struggle with cancer, or chosen prophylactic mastectomy to prevent cancer in the face of frightening family histories. We’ve held our breath at the news that newfound survivor friends were battling recurrences of their disease. We even heard from an upcoming model who was so moved by this project that she added an Of Scars tattoo to her tat collection. In every way, we are humbled and inspired. We’ve heard more perspectives than ever before, met our oldest and youngest survivors to date, and heard story after incredible story. Whether we’re learning what it means to live with cancer, or to rebuild with the new identity of Survivor, it’s been a powerful and emotional journey already, and we’re just getting started.

Beyond a deeper and more diverse group of models, our project is in the process of expanding our approach to artistic exploration of the Survival Experience. We’re calling our new series Seeing Scars, and with it, we’re deepening the art of conversation about cancer. In the coming months, we’ll bring in speakers, experts, and survivors with fascinating perspective on the third Tuesday of each month. Tonight, we’ll kick off it off simply with a refresher course on the Of Scars project for those who’ve followed it for awhile, and an introduction for anyone new to the project. If you’re in Minneapolis, and you’re free, come hang out with us at the Fox Egg Gallery from 7-8 tonight. (We feed people snacks. We’re cool like that.)

In coming months, we’ll turn this part of the discussion to matters both practical and profound. We’ll explore things as seemingly simple as talking to friends with cancer, and as challenging as feeling like your beautiful, sexy, and strong self during chemo.

We hope you’ll join us for a session or two (or hey, even all six!), but if you can’t, keep an eye on the site. We’ll be creating a podcast from each of the Seeing Scars discussion events, and posting it here for you to hear, or to share with friends.

 

october 1 soundtrack

we said at the event in october that we would share the music that was created for the evening, with the healing haikus that our friend Katy and her family recorded.

if you weren’t there, just a little background on that  – we wanted an ambient soundtrack to play during the event, one that wouldn’t be distracting or jarring, but would contribute in a meaningful way to the overall atmosphere.

if you go back and read this post about the haiku assignment, you will learn where these haikus came from. they were recorded for the event and our good friend, musician Ryan Paul got his band together and put music behind them.

 

 

 

process evolving . . .

in our first year of this project, kate and i were so grateful and eager to be meeting people that wanted to participate that we would schedule studio time and then jump in with cameras right away. it worked in the moment, but a more defined process began to emerge. we started to meet women who weren’t sure if they wanted to participate or not – so we started spending an hour or two just talking, hearing stories, and asking what motivated them to even be considering doing this. this seems so obvious now, and it has become an essential part of our process.

often in the course of that discussion, the photograph that i want to take of the person becomes very clear in my mind. sometimes i need more time to process before i talk about it, and sometimes i blurt out my idea in the meeting. when we met with our wonder woman, katy, she told us the story of having a double mastectomy on her 40th birthday. it occurred to me that we could help her reclaim her birthday – but that’s not how i said it. i get excited and all idea-bursty and just pounced on her with LET’S DO A BIRTHDAY PARTY!!  my words coming out hadn’t had time to align with where i was coming from in my mind, and it immediately didn’t feel right to her. we don’t ever want to push anyone to a place they don’t want to go, but i explained that depending on how we approached staging a birthday party it could be a chance for her to begin to replace a painful experience with a pleasant one. we did three photo shoots with katy, and we did end up doing the birthday party. she chose five of her dear friends to come participate and brought decorations and the actual birthday cards she had received. our mutual friend nicki baked a cake. people brought presents. we had the full spectrum of emotions. in the end, it wasn’t a staged birthday party, it was REAL. it was wonderful.

the photo that we chose for the october event was an interpretation of something that katy had told us in our first meeting: that she felt amazing support and friends and loved ones all around her, but still at times felt alone in her experience.

yesterday we met with an incredible woman named patty, and she went home and wrote about the meeting here. after the meeting my mind was racing with ideas that we want to try in the project. every single time we meet with a new person we learn something new, get inspired, and find our project growing wiser.

i wanted to write about our process because i want you all to know what we are doing behind the scenes, between events. i also want to let you know in case you are reading this and thinking of participating or meeting with us, so you start to get an idea of what to expect.

we are working on a plan to bring people together more often than in october. we are learning that though our project has a website, the real stuff doesn’t happen online. we want it to become more accessible, more often, and are moving slowly and surely toward that.

The Other Project

in the last week i’ve had so many people send me the link to this project that is similar to ours – The Scar Project and ask me how i feel about it. my first thought?

“OH MY GOD THOSE WOMEN AND THOSE PHOTOS ARE STUNNING.”

and my next thoughts, in no particular order, were:

  • does this decrease the impact of what i am doing?
  • what can i do to get that much attention directed toward our project?
  • would people more broadly understand what we are doing if we shared all our photos on the internet?

and then i started trying to answer myself.

NO. this does not decrease the impact of what we are doing, in fact, i think it makes it stronger. we are doing our part, in our community, to make a difference in people’s lives. i am glad we aren’t the only ones doing this! we can’t do it alone!

i don’t know what i can do to increase the attention we are getting, that’s not my field. but i will say that so far it has seemed that every time it starts to speed ahead of us, it’s not as genuine. the project has its own life, and its own mind, and it has bestowed upon Kate and i the honor of hosting it, holding its hand, being its guide as it puts itself into the world. it tells us what to do, and it tells us we don’t need to hurry to have an impact. we don’t need to hurry to be doing the right thing.

people may more immediately understand what we are doing if we posted all our photographs on the internet, yes. but . . . that’s not what we want. we started this project with the intention of starting a conversation, and to make people think. we had fears in the first year of how it would be received, and we were cautious in our approach. Kate and i personally both prefer to make people happy, not to chafe or shock. above all else we did not want to shock. we wanted to provide a kind and meaningful glimpse of real women doing real things and really surviving. and being beautiful because they ARE.

here’s the thing, and i find myself saying it over and over:

THIS IS NOT A PHOTOGRAPHY EXHIBIT.

we happen to take photographs of women and use it as a way to express this conversation. we use it as a way to introduce you to women who have a story to tell. we use them as a way to get people talking about what the journey is after a breast cancer diagnosis, so that more people can participate and lend a helping hand on that journey. or to at least have a glimpse of understanding and let down their barriers.

every october (and now that we have our space, probably more often) we celebrate the women we have worked with by hanging up their photographs and throwing a party. this is not a photo exhibit because a photo exhibit can stand alone. it will still be an exhibit when no one is standing in the room. this is different – it doesn’t exist without the amazing people that come together. you look at the photograph, and the woman in it is standing there, in person. and you talk to her. and you hear her story, in her own words. and you cry a little bit, or a lot, and you are overwhelmed with the power she has claimed by doing this and you are bursting with gratitude that she has stepped forward and done this and helped to unlock the start of the universal acceptance that HAS to come.

she is a pioneer, and you are there with her and you become a pioneer too. and that is why we are here. that is what our project means. we welcome other voices, other projects. we can’t do it alone.

It’s Here!

There’s no going back now! The Fox Egg Gallery is now filled with the images of incredible women. Amazing sights and sounds are cued up. And the day of a brand new conversation has arrived. Here’s a picture of the controlled chaos leading up to the event.

 

It’s Breast Cancer Awareness Month, and that’s important. But it doesn’t mean much if we don’t have, well…awareness. Pink is pretty, but wearing a ribbon doesn’t save lives. Early detection does.

Wearing ribbons in solidarity is a great gesture, but it doesn’t mean much if we’re not aggressively supportive of the women and men in our lives who are struggling with an illness that is at best frightening, and at worst life-threatening.

We need to be taking care of ourselves, our mothers, our sisters, our friends. We need to be reminding the men in our lives that they, too, can get breast cancer–they should be doing exams, as well. We need to stop being afraid of saying the wrong thing, and start simply reaching out with kindness. We hope that tonight, the courage and openness of our amazing models and friends will help us all to better understand this cancer that affects us all.

Here’s our schedule:

5:00-We begin! Hang out, see some art, have a snack. You know. You’ll hear a soundtrack. Listen carefully: it’s an original score by Ryan Paul and Corey Eischen of Sleep Study, written in honor of this year’s amazing survivors. In the background, you’ll hear the verses of a family deeply affected by breast cancer and incredibly proud of their survivor mom/wife. While you’re listening, please don’t look at me. It makes me weep, without fail.

6:30-Diedrich Weiss plays a gorgeous song he wrote, called “Wounds to Scars.” Pretty much, it’s perfect.

7:00-The incomparable Colleen, one of last year’s models, gives a presentation about how she works to preserve her legacy, and offers insight into how you can share your own.

8:00-Brianna Lane will play a set to wrap up the evening. If you’ve never heard her play, it’s worth coming just to see her. Of course, it’s worth coming just to see the art. Or just to hear Diedrich. Or just to hear the poetry and musical soundtrack.

Or just…come on in. We’ll bear hug your face.