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.
Resourceful. A leader. Pretty. Generous. Purposeful. Supportive. Tough. Upbeat. Organized. Self-Assured. Fair.
Our friend Ann passed away on January 22. Maybe she was your friend, too. She pretty much knew everyone.
Ann was one of the first women who volunteered to be photographed for Of Scars. Back then, we had no idea what we were doing, really. We did know it was important to learn a bit about people before asking them to take off their shirts, though, and so we designed this cutesy little questionnaire that we asked models to fill out and bring to their photo sessions. On the first page of our packet was a list of words, and instructions to “Circle the words that describe you.”
Ann was too big to fit in our little list of words, so she added a few of her own: Resourceful. A leader. Pretty. And on and on…
It was a huge turning point for us. It seems so obvious now, but we learned that day that people are beyond definition. Ann didn’t let our words define her, and she didn’t let cancer define her.
I knew her well enough to tell you just a tiny little bit about the things that did define her. See, her participation in Of Scars was a happy accident. We’d just posted the only open call for models we’ve ever posted, and somehow that resulted in a phone call from Ann to me, but I’d known her before. When I was a kid, I was in a choir, and Ann was our manager. She was an extraordinary leader, and a wonderful mom to her daughters, both of whom were also in the choir. As the years went on, she also became something of a mom to everyone else. If a kid needed someone to chat with, or a ride, or anything, really, Ann would reliably fill that gap. And as kids, we responded to her because she was a leader, and because of that big, pretty smile she so readily shared. Those things defined her.
Today, at her memorial service, hundreds and hundreds of people gathered to remember her. There were so many things to celebrate. Ann literally wrote the book on how to provide incredible customer service. She had an enviable career. She volunteered for every organization under the sun. She helped people when people needed help. In the wake of the tragedy at Columbine, she founded a program that works to make school a safe and welcoming place for students. She loved the hell out of her husband. She loved the hell out of lots of people, actually. She traveled. She made people laugh all the time. She raised successful and happy and compassionate daughters with smiles just like hers.
As the minister listed each of Ann’s accomplishments and affiliations, he’d ask for a show of hands from the people who knew her in that way. “Raise your hands if you knew her from high school,” he’d say, and a dozen or so hands would appear in the air. “Raise your hands if you know her from work.” Some hands raised again and again.
In closing, the minister said, “Ann lived her whole life drawing intersecting circles, and filling them with love.”
And there we were. In that room were hundreds of the friendships and projects and ideas she’d created, all intersecting at that very same point, in celebration of a woman who made our lives better.
Cancer might have taken her body, but it’s not quite accurate to say that Ann died from cancer. She lived through cancer, defining herself by the things that she wrote into her circles.
Thanks for showing us all how it’s done, Ann. This world is gonna miss you.
A few times per year, we are asked this question:
“Why do you do what you do?”
The truth is, this project was never meant to be a long-term deal. It began as a simple, photographic exploration born of conversations I’d had with my mother, as she went through her diagnosis and surgery. Those first few photographs were incredibly personal. And they were incredibly universal. So we took more. We talked to people who’d walked this road. We listened a lot. And we learned something very important.
Breast Cancer Awareness is not a month. In our culture, we like our messages easy. We compartmentalize. We watch as newscasters lead with ten-second summaries of major world events, and end with thirty-second feel-good pieces involving comical viral YouTube videos. We don’t want to be aware, really. It’s scary, and it hurts.
Real awareness means understanding, and understanding is a decision. If you really want to know what’s going on with anyone–or anything–you have to stop, and absorb, and listen (please listen), and respond. It seems so common sense, but those behaviors are in direct opposition to our quick-decision marketing culture.
I’ve said it before in interviews and on our podcast, but breast cancer amplifies the experience of being a person–and particularly of being a woman–in our culture. We are expected to be healthy, and perfectly sound of body and mind. We are expected to hold it together. We are expected to believe that our bodies define our femininity (or masculinity). We are medicalized and sexualized and idealized and minimized. We are not told that it’s okay to fall apart, sometimes. We are not told that we’re greater than the sum of our parts. We are not given the message that our bodies are only the tiniest part of our human experience, and the most fallible. We are not reminded that this is our greatest strength.
Real awareness is huge. Breast cancer awareness isn’t about pink stuff. We know people get cancer. But until it touches our lives personally, we don’t see the human part of that story. We need to ask ourselves what happens in the wake of that diagnosis: What happens to relationships? To mental health? To future plans? What does that all mean?
Real awareness is about people, and anytime we open ourselves to understanding the complexity and beauty of the people around us, we get to learn about ourselves.
This project teaches me so, so much. Somehow, we managed to stumble upon a project that asks people to take a minute to stop and think. And somehow, that’s healing to so many people.
See that woman in the photograph? She shared one of the scariest and most vulnerable times in her life with us. How gutsy is that? And then, nearly a year later, she came back for the “after” pic. You can see it tonight. She’s got a scar, it’s true, but she’s also got life in her eyes that will sparkle right into your heart. It’s beautiful.
And I hope that when you see it, you’ll find an awareness of your beautiful, strong self, with all of your sparkles and scars. That’s why we do what we do.
When Jill found us, she was a woman in the midst of transformation. A lifelong performer who felt as comfortable onstage as anywhere, cancer asked Jill to put her expressive side on hold for a bit, while she focused on her internal priorities. Jill carefully selected props and a location that reflected every side of herself. We got to see Jill as a bold presence, willing to share her journey with the world, and as a creative and contemplative woman who is finding out for herself what the next chapter of life holds. It was a graceful and personal session. I hope you’ll feel it, too, when you see the images on Saturday.
For the last three years, our Annual Celebration of Scars has been held at the Fox Egg Gallery in South Minneapolis. It’s a close-knit corner, and many of the business owners and neighborhood residents have grown quite close. Last year, the artists across the street at the 4 Points Body Gallery offered to help us out by tattooing the Of Scars logo onto anyone who wanted it the night of the show. Bunches of our attendees took them up on it.
This year, the offer got bigger. Several of the artists have developed flash specific to the event, drawings that symbolize to them the journey through and beyond cancer, in addition to our logo. They’re available for a small donation to the project. Above, you can see a couple of them, but we’ll have the drawings at Fox Egg Gallery on Saturday. If you’re into ink (or want to be), consider getting one of these small, original pieces. Document your celebration of scars, of survival, and benefit our project at the same time.
When we met Lisbeth, she shared the story of a winter of trials in a year when life got turned upside-down, for a bit. But she also shared a story of comfort: Of sitting in a picture window and watching the snow flakes dance around her in her own personal snow globe, sweater-cozy, somehow assured that things would eventually be alright. She shared the story of a loving partner, an exciting future, and a (mostly) graceful journey to healing.
The text conversation went like this.
Jessica: Do you think the theater would allow fire eating?
One of the other people organizing our shoot: [stuff about liability] but I’ll ask. It’s worth inquiring.
Jessica: Just for clarification, it’s just fire eating, not spitting fire plumes. I can’t do that.
It turns out, we weren’t allowed to bring fire into the gorgeous theater, although we definitely have plans to take a rain-check on the concept. (Come see those images next year!) It’s clear, though, that Jessica is a spitfire with loads of tenacity and a great sense of humor–elements that add up to a pretty freakin’ fun photo session.
Our big event is this Saturday. Remember? You’re coming, right?
The longer we work on this project, the more we figure out how to do it better. A couple of years ago, we realized that we needed to have meetings with our models well before we even schedule a photo session. It’s our way to make 100% sure that everyone involved wins, and no one loses. In those meetings, we talk about each person’s story–her diagnosis, her victories, her fears, her experience. We get an idea of what is motivating our model–the reasons for working with the project are as individual as the people who bring them. We brainstorm a conceptual plan.
And then we ask questions: “What is your goal for the photo session? What do you want to feel like when you’ve taken these photos?”
When we met Heather, she shared the story of a rather difficult diagnosis. The truth about survivors, you see, is that sometimes survival doesn’t mean freedom from this disease. Sometimes, you survive with the cancer, for the rest of your life. We talked for a long time about what that meant, and when we asked Heather how she wanted to feel after her photos, she said, “Honest.”
The day of the shoot, we showed up with paintbrushes and a roll of seamless paper, and Heather doodled the things that she carries with her as she navigates the Big Questions about life with cancer. It wasn’t always an easy list to read, but it was real and it was honest. And I guarantee that somewhere out there, someone will see it and feel a little bit less alone.
That’s why I love this project so very, very deeply. The courage of these women gets shared, and multiplied, and somehow turns into a community of support that amazes and humbles me. Surviving past–or with–cancer is heavy stuff. It’s honest, messy business and there’s not a road map or a flow chart that tells you what to do. But somehow, people come forward to remind us all that in the middle of the trickiest stuff, no one is alone. I’m so grateful to be a part of that message.
Stop by on Saturday. You’ll see what we mean.
This is the time of year that we are usually emailing you all and asking for donations on Facebook and trying to scrape together enough cash to pay for our big show at the end of September. So far, we have pulled it off in the nick of time to order the prints and pull it all together.
This year, we didn’t have to do that. We worked with one extraordinary couple to shoot their wedding this last weekend, and they donated the payment to our project. We have always been so grateful for all of the donations that we receive – everyone pitching in is what keeps this project running, and gives us the ability to share these stories with you every year.
We are really, really excited to show you this year’s photos! We will be making our final photo selections on September 8th, and will start sending out some sneak peeks after that.
We are going to begin taking donations for next year, and ideally lining up another wedding shoot. If you’d like to help us out, we need three things:
- If you know anyone who might like to discuss a wedding shoot with us, please send them our way.
- If you could spread the word about the event on Sept. 28th, we’d be delighted!
- If you would like to make a donation for next year – we’d be so very grateful. You can do so by clicking here.
We hope to see you on Sept. 28th!
each year at this time, kate and i start mapping out what the year looks like. we will be scheduling out our events, podcasts, and as many photo shoots as possible. we will also plan our fundraising efforts so we can get it all paid for.
we just released an open call for models for this year, and i wanted to send a more in depth note about what that means.
women who participate in the project by coming in to be photographed are always featured in our annual fall exhibit, and sometimes in our promotional materials for the year and blog posts, with permission and approval. before photographing anyone, we always sit down for a while to talk through everything, discuss the project and our goals in detail, answer questions, and hear every woman’s story. from that, we determine what the photo shoot might entail, and when and where it should be.
our very first podcast is a great place to start if you are just digging in to what our project is about. it talks about the origins of the project and how we work. you can listen to it here.
please contact us via email if you are interested in coming in to talk with us – no need to know prior whether you have made a final decision about being photographed. we’d love to talk to you and give you whatever information you need to make that decision. our email is ofscarsproject [at] gmail [dot] com. looking forward to hearing from you!
we are also planning out our 2013 podcast / monthly discussion series, so if you are interested in coming in to talk or lead a discussion, please email us at the same address.
Our final sneak peek is Monica. When she came in to talk with us about doing a photo shoot, she wanted us to push her boundaries and get her out of her comfort zone. Obviously, we suggested doing a Bettie Page shoot. Before we were able to get her shoot planned, she was diagnosed – a new, different cancer was found in her breasts, which meant she was facing her third lifetime diagnosis of cancer.
She called us and the first thing she said was, “I won’t have enough hair to do a Bettie Page photo shoot.” To which we replied, “Bullshit. We will buy you a wig.”
We might do two sneak peeks today, because TODAY IS THE BIG DAY! We are so excited for this year’s event to unfold. One of my favorite things is seeing the women who did photo shoots from each year all meet each other and share their experiences.
This sneak peek is of Tiffany. We did her shoot outdoors on the farm her sweet little family bought to eventually move to. What surprised us all at her shoot was that she realized it was the first time since she had been diagnosed that she was taking a day to focus on herself, and her own healing. Her son was still breastfeeding when she was diagnosed, and the focus had always remained on him, and his health. It was an honor for us to be able to be there to support her as she turned her attention inward, and started the journey of reclaiming her body after surviving cancer.
Last year, at our exhibition, our friends from Minneapolis-based band Sleep Study composed an original soundtrack for the event. Songwriter Ryan Paul employed tremendous sensitivity as he mixed audio clips of poetry written by one of our models (and read by her family) over a score that completed the experience of the event in a moving and stunningly beautiful way.
It was an “A-ha” moment for us. We’ve always said that our project is about more than the photos, but adding the voices of those impacted by the cancer journey added depth to the project. Amidst the conversations and levity happening in the room, participants could take a moment and listen to insights into that incredibly complex journey through cancer, with all of its joy, fear, pride, sadness, and hope.
This year, Jon Herchert of Dark Pony scored the event for us. Instead of poetry, we used audio clips that our “podmin” Josh pulled from our podcast. Some of it is just us talking about the project and what it’s meant to us. Some of it is playful banter between the participants in our monthly discussion groups. And much of it is vulnerable and real discussion that our models have bravely allowed us to make public. All of it is part of the story of this year’s incredible group of survivors. These women have moved us, and taught us, and inspired us.
The musicians who’ve so kindly helped us are in their own rites positive, compassionate, and delightful people. I perused both Sleep Study’s and Dark Pony’s albums today, and discovered delightedly that both albums have themes that are very much in alignment with our project. From Jon Herchert’s unabashedly uplifting lyrics (“Try to be true/Try to be you./That’s the truth”) to the unfailing hope in Ryan Paul’s “Nothing Can Destroy”, it seems that amazing people and messages keep finding their way into our lives, and into this project.
Join us on Saturday to hear our newest soundtrack, as well as a set by the wonderfully talented Actual Wolf. It’s gonna be good, we promise.
Here, for your listening pleasure.
Meet Brigitte and Sid . . . Not gonna lie, Sid got almost as many photos as Brigitte! She brought him along because he has been such an amazing support for her since her diagnosis. We always encourage the women who participate in a photo shoot to bring a friend who played a big part in their recovery. For Brigitte, her person was Sid – and the bond between them is profound.
Today’s sneak peek is Patty. Patty delighted with stories about her prosthetic boob and how she responds to people staring at her in the grocery store when she chooses not to wear it. You just have to come to our event to chat with her about . . . well, anything at all. Her approach to life is filled with positivity and fun, and we just couldn’t get enough of her when she came in to meet with us.
Today’s sneak peek is of beautiful Robyn. We spent a rainy morning in the woods behind her house, her two little girls costumed (a witch and a princess) and running around, her husband and best friend there for support as well. She has a tree house in her back yard and we decided to do the shoot there to capture her where she is grounded and happy in nature. Her home is an amazing nest of love, support and compassion.
Interesting note: This is one of two shoots we did outdoors this year, and one of three shoots we did in the model’s home (or in one case, the site of a future home.)
Over the next couple of weeks we will be sharing some sneak peeks for this year’s celebration on Sept. 29th.
This one is an awesome story of three friends rallying in support of their friend Ang as she began chemo and started to lose her hair. We had been introduced to Ang via email but hadn’t had a chance to meet her in person yet when saw an awesome event unfold on twitter. All four of them had a head shaving party and streamed the entire thing on uStream to raise some extra money to help Ang cover medical and living expenses when she couldn’t go to work.
It was a powerful thing to watch, and the spirit of it is representative of everything we try to be in this project. It’s an honor to have gotten to know these women over the last year, and we can’t wait to share the photos from the shoot we did with them.
Kate and I have placed the order for all the photographs in the show. We spent all day yesterday deliberating over it – tough choices. I am grateful we get to spend all year shooting and spending time with these amazing women, and only one day a year deciding which photos are getting printed and which ones aren’t. This year we found a way to share more photos, but you have to come to the event to find out about it.
We want to say thank you to all the wonderful people who donated this year – we took in enough cash to pay for the canvas prints we intended to order. We still need to pay for several hundred dollars of event prep stuff out of pocket, but the fundraising made a HUGE difference in our ability to put the event together this year.
We took down the thank you gift offers, but please remember that you can contribute to our project year-round at this link.
One incentive that hasn’t gone away yet is the tattoo offer. The lovely artists at the place across the street from our HQ, Four Points Body Gallery, have most generously offered to provide tattoos of our project logo during the Sept. 29th event in exchange for a donation to the project of $30 or more. They tattooed Kate and I as part of the deal.
Please contact us to set up a time slot if you are interested in doing this: ofscarsproject [at] gmail [dot] com
Lastly, please save the date of the event – Sept 29th at 5pm – in your calendars. We need you there!
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.
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.
the third in our Seeing Scars talks is coming up on tuesday. it’s one that i am very passionate about, and one that i think many people will be able to get something valuable from. the discussion will be led by our dear friend, Sarah Brown.
i started thinking about this topic during the planning phases of our first annual show and celebration. i was sitting on the porch brainstorming with a good friend of mine. she said that her neighbor had been diagnosed with cancer, and suddenly she struggled with what to say to her. she wanted to find the balance between checking in about her friend’s health, and not checking in too much – she didn’t want it to be the only thing they talked about. in the past they had always talked about gardening. so should she keep it to that? and then would cancer be the elephant in the corner? how could she be respectful and not prying? supportive without dwelling on it?
while everyone we talk to in this project has had a unique experience, there are many common threads that we see emerge. one of the major things that people experience is the difference in how people look at them, or engage in conversation. even strangers in the grocery store, staring at their shaved heads. it’s one of the things that can impact your self esteem as a survivor very greatly, and that’s why we are set on exploring it in this project.
i hope you will join us and contribute your experiences to the discussion. we believe that by talking through some of these root causes of self esteem issues in cancer survival, we can all play a role in making the experience less difficult than it already is.
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.
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.
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.
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.
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.
at our event tomorrow evening (sometime between 6 and 6:30) there will be a live performance of a song that diedrich weiss wrote when he was volunteering in the cancer unit & inpatient mental health unit. he has kindly offered to come perform his song Wounds to Scars, which you can listen to in the sidebar. look to your right.
and here is a sneak peek of us hanging the show. we are doing math!
if you have followed our project at all, you may recognize our dear Colleen. the first time we met her, we went up to her opera house in staples, mn and spent 15 life-changing hours with her. we learned about 975,000 things that day, but one of those things is that Colleen makes boxes.
she makes boxes for her son. there is one for him to open on his wedding day. graduation. the birth of his baby. the boxes contain all the things she wants to share with him on those milestones in his life. you know, in case she isn’t there to tell him herself.
this year we asked Colleen to do a presentation about legacy, and share her thoughts about these boxes that she makes. if you would like to take part in this discussion, please join us by 7 pm on saturday when she will get started.
When we began this project one year ago, I hoped with all my heart that we would be able to create a project with universal resonance. I knew it was a challenge.
Breast cancer is a disease that is both individual and universal. It hurts as as woman, and it hurts us as women. It changes the lives of men and children, mothers and sisters. It is everywhere. It is a secret.
My collaborator, the photographic genius that is Elli Rader, spent countless hours discussing with me what cancer means. We’ve talked about why it affects us all, and how it affects us each. We knew that exploring breast cancer was a task for which we were under-qualified. We decided to try it anyway. Because of our models and our readers, we learn more and more every day about survival. We strive to capture what that means in art. We hope we do it justice.
Yesterday, we got the news that a photograph born of this project has been selected for display in an incredible project. Woman as Photographer, as explored by the Minneapolis Photo Center in cooperation with some of the most amazing women in the Twin Cities’ art scene, has selected a photograph of Elli’s for display in an upcoming exhibit that seeks to explore the artistry of women who speak to women.
I am so proud of Elli for her fearlessness as she explores the artist within herself. I am even more proud of Elli for the artistry she unlocks in her subjects, and for the truths that she shares with those who see her work.
I’m proud to be her friend, to be her partner in this project, and to collaborate with her as we seek to share your stories. Thanks to all of you who have helped Of Scars to reach an ever-broader audience. We can’t thank you enough for helping us to find and to share the beauty of survival. Your stories are what makes this project resonate with survivors and those who love them.
I’m proud of you, too.
the other day someone contacted me to say that he has a friend recently diagnosed with breast cancer who would be interested in hearing more about our project, seeing some of the photographs and meeting us. and would it be okay if he gave her my email?
and this answer is the same, without pause, to *any* of you, whether i know you or not – YES.
right after the opening exhibit and panel discussion we held on october 1st, kate and i sat down with a branding expert, who asked us both difficult and easy questions about the direction of the project, our immediate plans, and our long term plans. when asked what our overarching, long term, biggest picture goal was – kate said:
“breast cancer runs in my family. if any of my three daughters are faced with the diagnosis, i want them to feel confident and comfortable making decisions about their treatment based on their survival and not their appearance. if i can help *anyone’s* daughter make a decision from that place, this will have all been worth it.”
i didn’t set out to write a what-we-are-thankful-as-an-organization blog post, but the timing of what i am thankful for in regard to this project is impossible to ignore. i am deeply, humbly thankful for the honor and the privilege of being sought out as a resource for a newly diagnosed woman. if there is anything at all i can do to help her in the struggles that she will inevitably face – by showing her photographs that we have taken in the project, or introducing her to the amazing women we have met and helping her build a network, or just having coffee with her and listening to her and being there – i will do it.
and i am SO thankful to be in the position of being able to do that for someone.
a good friend, survivor, of scars model sent us this wonderful video that she uses when she does speaking engagements to raise breast cancer awareness – we want to share it with you.
Through the magic of Twitter, I was directed to a link for the 007 Breasts Web Site, a fascinating little project that explores the American psyche in regard to breasts.
It’s a challenging look at the taboo of breasts in our daily lives, and its message works very well in partnership with our own. There are lots of issues that factor in to how our culture deals with breast cancer, but chief among them is the issue of body taboos: If unaltered, biological breasts are “sinful”, even when breast-feed a baby, how are we supposed to discuss and process what happens to them if cancer changes them? If “normal”, healthy breasts don’t look like a media ideal before a lumpectomy or mastectomy, how are we supposed to embrace their beauty in a new form?
It all boils down to the incredibly complex interaction between our media-saturated culture and our collective body image.
“Normal” breasts are as unique as the individual who “wears” them, and the 007 Breasts site contains page after page of non-sexual, galleries filled with images of normal, actual breasts–and a few images of breasts with unusual histories, as well. Check out the site, and ask yourself how these images differ from the breasts you see on billboards, in magazines, and on television. Would your body image be different if you’d been raised to think of breasts like these as normal, as opposed to those you see in advertising?
last month salon owner Jon Clifford of Accolades Salon/Spa invited the women who have participated in some of our shoots to come in for a day of pampering and dress ups. later that night they hit the stage at a hair show to represent his salon and our project, and to celebrate their beauty and strength.
the ladies got two standing ovations and absolutely lit up the stage. head over to our facebook page to see the photos, and while there please give us some Like.
in other news, we want to give you a head’s up that next week we will show you some exclusive photos and information from our Oct 1st exhibit for those of you who weren’t able to make it that night, or who were there but didn’t have access to it via QR readers, or who just want to see it again! we will take those pages live for a week, and then take them back down again, so watch for it.
thanks, as always, for your support!
In the piece, Lane points out that for her, the scars that nobody sees are the hardest ones to heal. I suspect that statement would be true for many of us.
In that spirit, I offer a challenge to all of us today. What can you do, right now, to honor and care for the most painful parts of yourself?
Be gentle with yourself today. Take a bit of extra care. And know that you’re not alone.
it really does seem that asking people to look at the beauty of physical scars helps them to see the value of, and bring to the surface, their emotional scars. i believe that when you bring them to the surface, they are easier to deal with–whether you “deal with” them by fixing them, understanding them better, or merely learning to accept them.
there are so many ways to heal.
just a couple of months after launching this website and beginning this project, a friend of ours was diagnosed with breast cancer. i told her about what we were doing and that we are here for her if she needed to talk. she responded that after reading the site, she felt so much less alone. in that moment i felt that we had achieved any goals we ever set out to accomplish. we had made at least *one* person feel less alone, and more understood.
in the short week since our opening exhibit and discussion that took place on oct. 1, we have been responding to a humbling amount of new messages, feedback, interest, and support for our project. as big as it felt to us in the moment, we know it was just the start of a long and wonderful journey.
we are so grateful for all those who came to the event with open hearts, compassion, honesty, and support. we have been watching as some of you have connected, and we couldn’t be happier about it. we wanted so much for the night to be not only powerful and emotional, but hopeful. not sad. honest. engaging. i feel it was all those things, and the feedback i’ve gotten since oct. 1st is that many of you feel the same. what made it so in my eyes was a convergence of intelligent and loving people who came together to create a safe space for healing to exist. people were honest with each other, open. giving. the response i’ve gotten over and over is: it was so HONEST.
i want to thank every single one of you who made it to our event, and to those who volunteered and sponsored the night – you made it what it was and we are grateful indeed.
we now have sheets and sheets of paper with new ideas for what is next, and we will keep you informed as we plan it out. for now, i just wanted to say thank you, with all my heart.
there will be so much more, and we hope you are all there with us.
From day one, the primary goal of this project has been to begin a new kind of conversation about cancer and survival. The discussions that have grown from Of Scars have led us to challenge our culture’s views on illness, recovery and beauty.
For the last two months, photographer Elizabeth Barnwell has generously donated her time and talent to Of Scars. Recently, I asked Elizabeth to send me a few thoughts on why she’d gotten involved in the project, and what she’d learned as a result. Below, you’ll find her very eloquent response.
My children have been bringing home scads of papers and forms from the first weeks of back to school, but one annual packet flat out disturbed me this year.
It’s the school picture order form.
Same fugly background colors and stiff poses as in years past, but in step 3 of the ordering process, this year I notice the form suggests that you “add retouching”.
The “Premium” package “whitens teeth, evens skin tone and removes blemishes, scars and fly-away hair”, but “does not remove braces, moles or glass glare” and costs a mere $12.
So I guess my 7-year-old might need retouching. What if he cuts his own hair on school picture day? I guess that could be fixed and nobody would ever know. Maybe we’d eventually forget that it ever happened.
Somehow this option, this “gift” of technology, makes me want to cry and scream and mourn for future generations that see only photo perfect versions of their parents and grandparents. Somehow, suddenly, photography isn’t about recording a moment or revealing a truth, but rather hiding our true nature and experiences…and why? Isn’t the implied message that we’re not good enough the way we are? Should we really aspire to the level of perfection worthy of a magazine?
What about simply being perfect to the ones who love us, owning our life lessons and experiences, and leaving tangible evidence of ourselves for future reference and inspiration? My favorite photographs from my family history are those that inspire a story and include a lesson and help me remember where I came from. These photographs are dear and awkward and some of them are uncomfortable, but I wouldn’t change a thing. I don’t want my past perfected or erased. That would invalidate who I am today.
I am a photographer with all sorts of technology at my disposal. I tell stories with images. For me, the power of the images for the present and the future lies in the truthful nature of the process.
This notion is uber-important as it relates to my work photographing breast cancer survivors for Of Scars. I have been working with Kate and Elli for about 2 months, so my visual and conversational research is still new, but I am finding some common themes that feel like truth: cancer is scary, fighting and surviving a life threatening disease is beastly hard, and yet the women I have had the honor to meet have told me that fighting and surviving breast cancer has made their lives better and richer and more precious. These truths feel like hope anyone could benefit from. The images I am trying to make as an artist and a human must convey these profound truths and secrets to living well. Therefore, I am declaring this work certified organic, natural and free of retouching. The truth, beauty and love in the photographs is real and it is believable because it flies defiantly in the face of a commercial vision of beauty–we’re not trying to sell you anything.
It feels crucial to me that the awe-inspiring wisdom and human truth that survivors have earned and created and found in surprising ways be made available to the most important audience for this work; women and men diagnosed, fighting or surviving breast cancer and those close to them.
I’ve heard several times that being a breast cancer survivor is like belonging to a club that nobody wants to be a member of, but that once you’re a member you’ll find friends and inspirational people you might never have otherwise crossed paths with. For Julie, Lori and Bridget–the women I have photographed thus far–this work is for you, of you and inspired by you.
It is all you.
Your stories are already written on your bodies and in your eyes and they are powerful and divine.
This work is going to be your life-after-cancer yearbook, and your education and accomplishments are going to create a positive ripple effect beyond what any of us can imagine right now.
Everybody else: hold onto your desks, school is in session.
Elizabeth Barnwell is a Minneapolis-based photographer with a great big heart and a sense of adventure. See more of her work at www.ElizabethBarnwell.com.
NEWSFLASH: Four amazing Of Scars models stopped by for brunch, chatting and video-taking. We’ll have some really fun stuff to show you soon.
QUESTION: I’ll tell you what I think in an upcoming post, but I’m wondering what you think about this Men’s Health article. It says women “approve” of these “respectful and honest” secrets about breasts, but I have to wonder: What do stories like this tell us about our value as whole people? Do stories like this over-emphasize the importance of breasts? Or are breasts really that important to women and men?
REMINDER: Party’s almost here. October 1st. We’ll see you there, right?
hi! we’ve been handing out postcards about our celebration on october 1st and we hope you can make it – we’re organizing a great night of discussion, photography, food, drinks and music.
we are so excited to dig deeper into the stories and images of what we’ve been doing all these months, and we hope you have set aside the evening to join us.
the event will be held at 110 N. 3rd street in downtown minneapolis, next door to the 112 eatery. this is a private loft, the studio of Carter Averbeck and Trompe Decorative Finishes. you will need to check in with a door person to get in, but please know that it is open to the public with or without a paper invitation. We will be accepting donations at the door. We will accept checks, cash and credit cards (we will have a laptop and a helper to put credit card donations through online.)
The evening will start at 6 pm with viewing of the photographs, QR links to the stories and more images of the survivors we have photographed, and music by DJ Joseph Pettini. We will also be featuring a panel discussion hosted by Jeff Kamin, creator and moderator of Books and Bars. One of the panelists is Kevyn Burger, a wonderful woman who very publicly went through the discovery and treatment of breast cancer. Following the discussion there will be a brief Q & A session with Of Scars founders Kate Kunkel and elli rader, and a set of live music by Venus de Mars.
Please tell everyone you know about this event!
Occasionally, someone will approach us and say something like, “I like what you’re doing. But what about the women who don’t survive?”
Today we had a beautiful and profound photo shoot that left both elli and I slack-jawed and dumbstruck with its intensity. During the course of the shoot, I heard this striking quote:
After you’re diagnosed, you are a survivor. Every day that you are alive, you are a survivor. It’s that simple.”
As we reach deeper into our celebration of survival, I wanted to take a minute to honor the survivors who are no longer with us. Thanks for what you taught us, when you were here.
Despite the relatively quiet nature of our recent online presence, the growth of this project is breathtaking. In recent weeks, we’ve found support from Metro Magazine, begun the incredible process of planning our first gallery opening (it’s October 1st–save the date!), and received some tremendous kudos from some unbelievable sources. By and large, it’s been a period of overwhelming growth, and we’re as proud as ever to be working on this project.
We’ve also learned a thing or two about what we don’t know. For example, in a recent post elli wrote:
to whatever extent we do or don’t admit it, and forgive me for opening up an ages old and epic debate – men have an impact on how we feel about our own beauty and strength.”
And boy, did it ever open up an ages old and epic debate. One of the people who chimed in was a reader who wrote:
I sent my friend [name omitted] your web page before I even looked at it…. We’re both lesbians, and men don’t, in fact, have any impact on how we feel about our beauty and strength. Not our brothers or fathers, not the men who want to co-opt our sexuality for their pleasure, not the men who over and over say, “You’re not even a little attracted to me?” Your statement is true only for straight and some omnisexual women. Not us. We also both are a bit taken aback that the photos seem to be decapitated, without heads and faces. Are they all like that?”
It was a comment that caused both elli and I to pause for a bit. We’d certainly never meant to exclude anyone. It was simply that no lesbian women (or bisexual or transgendered, for that matter) had come forward to share their experiences with us. We cannot tell that story until someone helps us to do that. And though we assured our reader that the images on our site aren’t the final product (in fact, some of our models requested that we not share their faces online), she wasn’t able to find common ground with our project as a “lesbian living in a heteronormative patriarchal world”.
Our reader had a point. For all the common ground that survivors share, the healing process is as unique as the individual doing the healing. I began to wonder what we didn’t know about what it means to survive breast cancer, or any trauma for that matter. And to make sure we don’t limit the answers with our own filters, we’d like to open this forum up to you. In just one minute…
In my own life, nature has always directed me toward my most profound moments of healing. As a shutterbug, I tend to capture snapshots for future reference. Here are a few of my favorite lessons:
In a lush evergreen forest, a tiny shoot grew from a long-fallen log, and I learned that we all have the power to nourish the world that will live beyond us. At that moment, I promised I would live with this truth in mind.
On a rugged Pacific beach, I stumbled upon this informal work of art. On that gray day, I remembered how delicious it is to create; to harness one’s playfulness and use it to find magic. In my heart, I thanked the anonymous artist, and vowed to pass their gift on to others.
As the storm rolled in, my instinct was to look to the clouds, dark and churning. The man who I love gasped. “Look at the way the sunlight catches the waves.” I learned that day that even on life’s most turbulent waters, a light is always shining. But to see it, one must look.
It was just last year, staring in to the depths of the Royal Gardens at Keukenhof, that I realized I was different from most, but not alone. For the first time, I felt beautiful.
And now it’s your turn. What does healing look like to you? Who helps you to heal? Does it come from within, or do you find it around you? Post your comment, or shoot us an email. Send us photos, or drawings, or writing that illustrates your process. Who or what helps you to find who you are in your purest form?
What is your process? How have you healed?
two days ago, after many hours of shooting for this project, i took a few minutes to sit in my kitchen and just cry.
i cried for the women who didn’t win their battle with cancer. i cried for their families. i cried with fear of the odds that i would face this in my own body. i cried out of awe and pride at the women who fought the battle and came out stronger, still fighting – because beating cancer isn’t the only thing on the agenda. they have life altering decisions to make about how to rebuild their bodies, rebuild their lives, rebuild their relationships, and fit back into the puzzle. i cried out of gratitude and absolute admiration at the grace and courage it has taken for the women we have met to come and stand in front of our cameras and not only show us their scars, but be willing to show everyone their scars.
our single goal in starting this project was simple, and we achieved it the moment we started: to start a conversation about what the scars mean and why they are beautiful, and why we should embrace them rather than hide them, worry about them, or be embarrassed by them. we achieved the goal the first day, and we continue to set new goals and try to reach new audiences with every new reader and supporter that finds us.
somewhere along the way, a new perspective clicked into view for me about how important the role of men can be in the healing process. we have talked with many women and in almost every story, there has been a man somewhere in the picture to love, support, carry, soothe, and respect her – whether it was the boyfriend of a best friend, or a father, a son, a husband. to whatever extent we do or don’t admit it, and forgive me for opening up an ages old and epic debate – men have an impact on how we feel about our own beauty and strength.
we started collecting some of the stories as told by the men who have weighed in on our project and some of the men the survivors we have worked with have introduced us to, and we will be sharing many of them to feed the conversation we have started.
the first of these is in interview form with josh “danger” berg, a friend and supporter of the project and grandson of norma hirte, a 20 year breast cancer survivor. josh was one of the men in her life who accepted and loved norma unconditionally, and found an opportunity to look her in the eye, express that acceptance and love, and put her at ease.
q: what is your grandmother’s name?
a: norma engen hirte, she had her maiden name changed to her middle name after marrying my grandfather. but everyone just called her grammy or sometimes i would indulge in calling her gram or gram cracker.
q: do you remember when your grandma was diagnosed with breast cancer? how old were you?
a: it was the summer of 1988 so i was 10 years old.
q: do you remember any specific details about that time in her life?
a: that year was her and my grandfathers’ ruby anniversary, we got a new dog named… ruby. my uncle pete, mom, brother ryan and i all lived with my grandparents at the time. she had her own very successful catering business on top of running a large household. she still always found time to help me with my english homework.
q: how close were you and your grandma? what parts of her are part of your daily life? what did you learn from her?
a: we were very close. my grandmother and i kept no secrets. having been raised in a traditional norwegian-american farmstead there were some things we didn’t talk about… but it was still known. i got my manners from my grandmother; along with wicked ballroom dancing and polka skills, a bunch of cooking techniques and her coolness under pressure.
q: was it discussed with the rest of the family, was it explained to you, or was it kept secret or quiet?
a: i don’t know if it was necessarily kept secret but it was one of those things we came to not talk about. i visited my grammy in the hospital and got to hold her hand shortly after surgery. i remember strongly the sight and smell of iodine and how it discolored her skin.
q: what kind of treatment did your grandma have, do you know, or do you remember?
a: she went through aggressive chemo treatment and a single mastectomy.
q: did your grandma survive breast cancer?
a: yes, she was a 20 year survivor when she passed away of a brain aneurism.
q: you were faced with an opportunity to express support – kind of a pivotal moment for Gram, even though you weren’t aware at the time what your reaction would mean for her – can you describe what happened?
a: my son and i had moved in with her after a life event and i had found her bra pad in with my laundry out of the dryer. i took it to her and she looked really embarrassed i had seen it. i looked her in the eye and told her she doesn’t have to be embarrassed around me about that. i got to tell her then how strong i felt she was for having survived such a difficult thing. the survival rate wasn’t very good back then and i remember how harsh her treatments were. i had always felt proud of how valiantly she fought that battle.
q: what did you think it was? did you understand what it was, or what it was for?
a: yep, i knew. i had seen it before and grammy had a catalogue of products like it i saw when getting the mail one time.
q: what do you think that moment meant to her, at the time? what was her reaction? how did it help you understand what she was going through? was she able to answer your questions openly?
a: i hope that she was able to know that i accepted what happened a long time ago and that i never thought it to be anything she should be ashamed of. it helped me understand that even though the event had happened nearly twenty years prior, her mastectomy still was a source of pain for her. we always talked openly when we discussed things like this and it was a learning and strengthening event for us. she was more comfortable speaking about her surgery around me.
q: what is your perception of how breast cancer affects women?
a: i think ultimately it comes down to who is affected. some of the survivors i know of weren’t prepared for the after effects of their surgery and it is something they feel the need to hide completely. others i know have taken ownership of what happened and they count themselves proud survivors of a battle that some aren’t able to win still.
q: what do you think about the scars of breast cancer survivors?
a: i think that everyone has scars, either internally or externally. i think that those scars help paint the portrait of your life. for instance, i have several scars from my more rough and tumble years and a few from my world famous cycling accident a few years back. when people ask me about my scars, memories come flooding back to life as though i had lived that experience yesterday. i think that there is a great power in the scars of the survivors of breast cancer. you have the ability to remember the strength you felt when you found that you defeated a very powerful opponent. i can only hope if i ever have a similar battle that i can do so with the courage and determination that my grandmother showed me.
q: how do you think your grandma would feel about the of scars project, if she were here to see it today?
a: haha, my grammy was very demure; i don’t know if she would have approved but i know she would have loved the spirit that you have. and until the day she was taken from us she supported every survivor or woman going through treatment like a rock. i think she would have secretly loved it though.
We need your help.
Our next photo subject, Shelley, is a fireball.
Breast cancer, to her, was a call to action. In the months and years after her diagnosis, Shelley decided that the key to healing was to help others to heal. “I believe I am a survivor for a reason,” Shelley says, “so being able to talk about my experience has really helped me to come full circle.”
To that end, Shelley has been involved in lunch-ins, cancer walks and the Pink Ribbon Mentoring Program at Mayo Clinic, where she was treated for her cancer.
One of her favorite causes is the 1 in 8 Foundation, an organization founded in honor of the late Linda Eastman McCartney, the wife of Paul McCartney and a tireless activist who succumbed to breast cancer in 1998. Committed to providing early detection for all women, the foundation inspired Shelley to embark upon a project called Bras Across Minnesota to raise money for the cause. Basically, the idea is to collect enough bras (and a small pledge with each) to stretch across the state. Similar projects have mobilized in other states, and if enough bras (and donations) are collected to stretch across the United States, enough money will have been raised to provide nearly half a million mammograms to women who could not have otherwise afforded them. It’s an amazingly ambitious project, and one that undoubtedly makes a difference.
When we began discussing the project artistically, we wanted to incorporate a visual representation of the work Shelley has done, and so we’ve decided to collect bras. Pink ones are best, but we’ll take whatever you’ve got. So, hit that lingerie drawer, and pull out the ones you no longer wear, and send them to us:
The Of Scars Project
PO Box 68172
Minneapolis, MN 55418
If you live in the Minneapolis/St. Paul area, and prefer for us to pick up your old bras, shoot us an email and we’ll arrange it with you.
Bras should be in clean condition, and you’ll get massive brownie points if you can find some cheesy pink ones for our li’l’ photographer selves. All collections must be made by Friday, July 16th, 2010. When we’re done with the photo shoot, we’ll donate the bras to Shelley.
Extra massive brownie points for making a donation to Bras Across Minnesota while you’re at it. Details for donations can be found on that Web site, or you can email us to find out more.
All emails should be sent to ofscarsproject (at) gmail (dot) com.
Just think about it. Your bra could be famous!
As we went into our shoot with Ann (see also the previous post about Ann and Frida the wig) we were reading through the notes in her file. We send each of the models some questions to help us understand how she feels about herself, her surgery, her process, her body. her image. One of the things we ask is for them to circle words from a list of adjectives that help describe the way they feel about themselves.
We read Ann’s list and were just beside ourselves when we found that she had done the exercise but then went one step further by writing in her own list of words.
We were reading the list in the car on the way to the shoot and as we began taking pictures, her words were echoing and inspiring us. We have a lot of pictures from that day, but one in particular grabbed my attention – even though i almost passed it over when pulling out the main images i wanted to work with. I set it aside for a few days until it occurred to me that it needed to be the backdrop for her list. Her wonderful, amazing, inspiring list.
I like the photo because you can’t tell if she is laughing or screaming – and paired with the list, it could be either. I know what she’s doing because i was there, but i’m not telling.
Recently, the Of Scars team did a photo shoot with Ann, a survivor with a fiery spirit and an obvious zest for life. Accompanying Ann on the shoot were two of her allies in the battle against cancer: her husband; and Frida, a flouncy bob-cut wig.
Named for renowned painter Frida Kahlo, Ann’s wig became a symbol of defiance throughout her cancer journey. “I was diagnosed at around the time that the movie Frida came out,” Ann explained. “I liked her strength as a woman.”
Frida’s appearance on the shoot leant a bit of levity, to be sure. But I was surprised and touched by her presence, as well. Rather than looking at breast cancer as a loss of identity, Ann chose to create for herself a new and deliberate persona. With Frida, Ann harnessed her own strength and passion, and wore it for all the world to see.
Again and again, this project makes me proud to call myself a woman.
The really moving thing about this project so far has been that it moves in its own direction, on its own accord. When I put out the all-call for Haiku, I anticipated that I’d be inundated with silliness, which was okay with me. I needed a pick-me-up, and I’d selfishly decided to use this blog to create one, just for me.
There wasn’t any silliness. In fact, there was only one submission, which was surprising to me, considering that the number of visitors to our page has soared recently. But that one entry was so unbelievably well-crafted that it took my breath away. Reader Katy actually emailed this disclaimer along with her work of art:
I am not a writer.”
Come again? Of course you are.
Here’s what Katy wrote:
My first mammogram
I avoid my reflection
Goodbye double D
I miss my nipples
Nursed my babies for six years
Changed me forever
A battle ground well traveled
Call me warrior
Day number 19
Had total body hair loss
Still have my feet warts
I, Wonder Woman
My comeback is slow but sure
I wear pink with pride
Hair on my head grows
The flowers bloom in the spring
Shave my legs again”
Wow, Katy. I will call you Warrior. And a writer. And just in case everyone isn’t convinced of the effect that women like Katy have on the world, let’s take a minute to see what her 7-year-old son wrote:
Mama lost her hair
Like dead autumn leaves it fell
Looks like a fighter”
There aren’t really words for that, except that it’s true. I hope today you recognize that, Survivors. You look like fighters, and it’s breathtaking. Wear it with pride.
(Enjoy your coffee, Katy!)
Let’s talk about Spring. It’s a pretty celebrated season, really. Frank Sinatra sang about it. It’s got fluffy bunnies and chicks working for it. Snow melts. It starts to get warm. Pretty solid reputation for a season, if you ask me.
But today, at the Of Scars headquarters in Minneapolis, Minnesota, spring looks like this:
I’ve spent my morning slowly checking tasks off of an endless to-do list, and when I got to “Write a Blog Post”, I was keenly aware of the fact that we’re often sorta serious here at Of Scars. And, well, it’s a gray day, and doing serious things on a gray day can feel very, very heavy.
I’d prepared a stirring, sweet and certainly life-changing post about the value of artistic expression in the healing process. The post would likely have won us a Webbie, catapulting our cause into the center of global consciousness and raising enough money to not only cure breast cancer, but to eradicate hunger and end all wars. It was a good concept, but as I sat down to write I realized that on such a gray day, my topic was a serious thing and therefore very, very heavy.
And so writer’s block took over, and though I forced myself to type through it, all that came out was this Haiku:
I WRITE ABOUT BREASTS
MORE THAN ROMANCE NOVELISTS
OR HUGH HEFNER’S STAFF.
Hm. Not exactly what I’d intended. But silly writing exercises sometimes open enormous floodgates, and so I sat down to try my touching, evocative piece once more.
No dice. At this point, I’d flipped on the Haiku centers of my brain, which is a dangerous thing. See, before I went freelance, my last 9 to 5 gig involved working for a man named Tom Petters, who was basically a small-scale Bernie Madoff. After the FBI raided our office, my coworkers and I coped with the stress of an imminent layoff by writing deplorable quantities of Haiku. It seems that by writing Haiku today, I’d somehow sent myself into a sort of frenetic flashback that enabled me to do nothing of productive value. At this point, I could only write Haiku. And so, instead of my earth-altering blog post, I wrote:
I HOPE THAT YOU KNOW
THAT YOU’RE WORTH MORE THAN YOUR BREASTS.
THAT’S WHY WE DO THIS.
Eh. Well-intentioned and true, but boring. Besides, the bizarre Haiku Flashback Effect had also made me feel a bit irreverent. So I kept going:
IF I LOST MY BREASTS
I WOULD USE MY PROSTHESES
TO THROW AT SALESMEN.
I have no idea where that one came from, but it certainly made the idea of future car purchases a bit more entertaining.
So it’s come to my attention that my brain has refused to write a very, very heavy post on such a dreary day, and any attempts I make to go against my brain’s intention will result in a barrage of horrible, horrible poetry. I will save the heavy post for a lighter day.
Instead, I’ll offer you the opportunity to stoop to my level, and together, we will put this arts in healing concept into practice. We will fight breast cancer with Haiku. Plus, I’ll offer you a shot at a prize for participating. Compose a Haiku about how breast cancer has touched your life or the lives of those you love. You can be funny, serious, or sweet. The point is just to express yourself.
Email your Haiku to ofscarsproject(at)gmail(dot)com, and we’ll send a $10 gift card to Caribou Coffee (a tremendous supporter of the fight against breast cancer) to one randomly selected entrant. Poems must be submitted by 10 P.M. on Thursday, May 13th, and must include the entrant’s first name and contact information (we’ll keep it private–it’s just so we can send you your treat if you win). We’ll post some of our favorites, along with the winning entry, on Friday, May 14th.
By no means do we mean to trivialize or make light of the experience of fighting breast cancer. However, study after study shows that laughter can improve quality of life as well as outcomes when it comes to cancer. Plus, a 2006 study published in the Journal of Pain and Symptom Management indicates that artistic expression through art therapy can reduce cancer patients’ pain and anxiety levels. Cool stuff, huh?
So in honor of defying breast cancer (and gray days), let’s have some fun and express ourselves.
My 10-year-old daughter was given a fun assignment in school today: write a “Six-Word Memoir”.
The urban legend goes that Ernest Hemmingway was challenged to write his life story in six words, and he responded with “For Sale: Baby Shoes, never worn.” Hm.
Apparently, this Six-Word Memoir thing is kind of a big deal. Four years ago, SMITH Magazine Online began collecting Six-Word Memoirs, and has published several books of responses to the challenge.
Everything about it amazes me. The idea of simplifying all the complexities of human existence at any given moment down to six little words? Woah. The copywriter in me becomes breathless at the conciseness of it all.
So I put a challenge out on Facebook, as any geek would do. And people responded!
My favorite was this one, by the amazingly talented Jon Herchert: “Miracles happen everyday. You are happening.”
Just think about it for a minute. Right now, at this moment, you are happening. You are occurring, and unfolding, and being. Beginning and ending and existing and expanding. You are a verb. You are.
And isn’t it good?
“GIMME YOUR LUNCH MONEY!” it says, pinning us up against a wall.
“Uh, Cancer,” we say. “We’re not in elementary school anymore. We put our lunches on our cards.”
“Ah,” Cancer answers. “Then GIMME YOUR BOOBS!”
We’re tired of this bullying behavior. It’s time for retribution, Revenge of the Nerds style. Because seriously, Cancer, you can take our boobs. But that doesn’t mean we don’t get the last laugh.
Take Sara Jane Adair, for example. Sara lived with cancer for 13 years, and by all accounts she really lived through the experience. Those who knew her described her as vivacious, feisty, strong–and always funny.
While Sara was undergoing chemotherapy, Michael Johnson, her brother and a journalist in London, began drawing funny cartoons and sending them to her. On his Web site, Johnson says, “When I realized how much my efforts lifted her spirits I found myself digging deeper into a strange world of roundish shapes.”
The resulting book, 101 Uses for an Empty Bra, is a hilarious tribute to the experience that so many women go through after their mastectomies. It’s available online at emptybra.com, along with sneak-peek images of cartoons contained within the book, and a few minutes on the site will have you laughing until you cry. The images are hysterical. Bras are converted into “Ken and Barbie Bumbershoots”, “Surgeon Stranglers”, and, my favorite, a “Cantilevered Dental Prosthesis for Extreme Underbite”. The book makes a perfect gift for anyone with a slightly devilish sense of humor and deep sensitivity to the experience of women living with cancer.
On the site, Johnson remembers his sister as a wife, mother, sister, calligrapher, and flautist. He notes that nearly 700 people attended her funeral in Denver in 2007, drawn to her by her “irrepressible” sense of humor.
Up yours, Cancer. You never stole her smile.
Thanks to Molly Johnson for submitting the story of her Auntie Sara. You can share the stories of the amazing women you know who’ve defied breast cancer by sending us their stories at ofscarsproject (at) gmail (dot) com.
Sounds like a serious subject, right? Nah.
See, Iranian cleric Hojjat ol-eslam Kazem Sediq isn’t just notable for his highly un-pronounceable name. He’s also an expert on God, breasts and geology. And he’s fairly convinced that our breasts, ladies, are the cause of the earthquakes that have killed tens of thousands of people in Iran in this decade alone. I’ll allow Hojjat ol-eslam Kazem Sediqi (how on earth do you say that?) to elaborate in his own words:
“Many women who do not dress modestly lead young men astray and spread adultery in society which increases earthquakes.”
Hmm. So…our breasts are so powerful that not only do they render men completely faultless for cheating on their wives, but they can also cause earthquakes? Sweet. I wanna know what else they can do!
I mean, is it possible that my breasts are responsible for the eruption of the Eyjafjallajökull volcano in Iceland? And what’s with the correlation between breasts and things that are really, really hard to say?
But seriously. Imagine the possibilities! We could use the combined power of our boobs to accomplish all sorts of dastardly things. For example, the exposed breasts of this project’s models theoretically will cause a massive spike in males who sin, angering the Almighty and almost certainly producing a large hurricane in our home city of Minneapolis. Having leveled a sizeable city with our audacious bazoombahs, we’ll return home to buy flooded real estate at tremendous discounts. It’s just one city, but it’s a huge step on the Feminist Agenda’s Step-by-Step World Takeover Manual.
Noting that Hojjat ol-eslam Kazem Sediq–who I’m henceforth just gonna call “Ho” for short–didn’t seem to provide much scientific data for his claims, Facebook member Jennifer McCreight is organizing a massive experiment. It’s called “Boobquake“, and the plan is for female Facebook members to cause an earthquake by simultaneously wearing cleavage-revealing shirts on April 26th. Looks like your jumblies will be causing the rumblies, ladies! Way to lead those poor, sweet, helpless guys astray. The only thing that could protect the earth from untold tremors and terrors would be for those fellas to not commit adultery in response to our shirts? Will Iranian men be able to take responsibility for themselves and save the world? Tune in Monday to find out!
It’s funny! It’s hilarious, and out there, and crazy, and we’ve never heard anything like it! Except…we have.
It’s easy for women in our culture, and in many others, to develop something of a love/hate relationship with our bodies in general and with our breasts in particular. What my buddy “Ho” was saying is just a more obvious and radical version of a sentiment that women hear all of our lives.
We’re told that our breasts have power. I’m okay with it so far, I guess, but that’s not all. We’re told that our breasts have power because they’re beautiful. Alright. I’m still in, I suppose.
Here’s where it all falls apart for me: We’re told that our breasts have power because they’re beautiful, and that this is somehow wrong. Don’t believe me? I’ve got examples.
- Last December, police were called on a woman who was breast feeding her four-month-old infant in a Michigan Target store. Because, let’s be honest: Mary Martinez’s all-powerful, life-sustaining breasts were clearly presenting a huge moral threat to the Target security guard who called the authorities, claiming that it was illegal for her to breast feed in public. In fact, it is perfectly legal, and Target corporate policy allows for breast feeding in stores.
- More recently, in Oxford, Alabama, Erica DeRamus had to choose between being paddled (wtf???!!!!!) or suspended when she showed up her senior prom wearing a dress that was determined to be too revealing. Because her cleavage was so powerfully beautiful that it forced an administration to condone physical punishment of children on an institutional level, right? How’s that for logic? And how many boys were punished for dress code violations?
- Though the policy changes faster than we can keep track of it, social-networking mega-site Facebook has at times published policies prohibiting photographs of bare breasts in any context, including photographs of breast feeding and relating to breast cancer.
The list goes on and on, ranging from thought-provoking to patently ridiculous, but one central theme remains. In our culture, it’s okay for multinational corporations and advertising agencies to sexualize our breasts to sell products. It’s okay for religious leaders in our culture to demand that we hide them–it’s not limited to Iran, and it’s not just our friend “Ho” who thinks this way. It’s acceptable in our culture for men to blame our breasts for causing them to “stray”. But it’s not okay for me to celebrate their femininity in my formalwear choices, or feed my baby with them, or show them in an honest and realistic and educational manner?
It’s really, really hard to know what to think of our breasts. If we’re careless with them, after all, it’s “slutty”. If we’re proud of them, we’re accused of immodesty from one side, while the other side says we’re more than the measure of our breasts and we shouldn’t care. If we’re shy about them, we’re “prude”. And that’s assuming that our breasts behave in a “normal” way.
So what happens when we add breast cancer to the mix?
Let’s imagine for a moment that your slutty/prude/immodest/unenlightened/all-powerful/beautiful/ugly/sinful/proud/shameless/lucrative/hidden breast finds itself affected by a disease that might kill the rest of your body. You didn’t know how to feel about it before your diagnosis. So how in the world can you be expected to make the decision that’s best for you in regard to your treatment?
And–please tell me–how on earth can a woman know how to feel about her body when those ever-confusing breasts are altered, or gone? When her “beauty” and her “power” are gone, and all that’s left is scars?
Can someone call me when it’s okay for us to regard our breasts as beautiful, without buying in to the idea that our breasts are our beauty? Will you wake me when women and our bodies are no longer held responsible for the decisions that anyone else might make? And please–please–let me know when it’s okay to embrace a woman whose views on sexuality/modesty/breast feeding/bottle feeding/working moms/stay-at-home moms/mastectomy/lumpectomy/ reconstruction/not reconstructing/minivans/SUVs/SmartCars/gas guzzlers/ men/women/weather/pop culture differ radically from my own?
When can women just live, without it offending someone? Will you let me know when that happens? Because I promised to keep this light, and it appears that I’m failing, and so I have to stop writing now.
I hope that this project helps us all to understand the beauty of our unique experiences, whatever they may be. I hope when you stop by our site now, or when you see our prints later, you recognize a part of yourself. I hope that it makes you proud. I hope you can see that your real beauty and your real power are in the real you, whatever form that takes.
Until then, let me know if things change. You’ll find me in my closet, trying to make a tornado with my nipple.
i met this boy in the early 90s, a friend of a friend. he came into the bookstore where i worked because his friend told him he “met this weird girl with a cat necklace.” he came in to sort of, i don’t know? make fun of me? or see the freakshow. but what happened was, we became the best of friends. we hung out all the time – mostly listening to music, going to shows, eating cheetos. he was funny, with a dry self-deprecating humor. he was moody. he hung out in coffee shops to read, or to write sad poems. we were exactly the same.
at the time, email wasn’t something everyone had, and i moved away to the west coast. we kept in touch for a while via (*gasp*) letters written on paper. put into envelopes – with stamps. remember? but that faded away and we lost contact. it wasn’t until a few years after i had moved back to minnesota that he randomly found me (through music, of course) on myspace. (which actually seems even weirder than writing letters.) one of the first things i discovered as we got reacquainted was that he had a cancerous tumor in his brain. he apologized to me for bringing himself and his tumor back into my life. i’m not sure exactly what my response to that was, but i’m sure it was the equivalent of shut the hell up / give me a break / we’ll get through this.
i tried to be a good friend. in fact, i had to re-commit myself to the task several times because i work more than full time and i have two kids. it’s not easy to sneak in time in person with friends, and todd wasn’t able to drive anywhere on his own to meet me. there were things that i would be doing that he couldn’t do, like being at live music (the lights, the fast bright lights) or being in noisy, crowded places. i would go pick him up sometimes and take him to ice cream or coffee, or we would take my kids to the playground. even in the midst of intense chemo and with anti-seizure medication weighing him down, he would climb around like a little monkey with those kids on the playground. it means the world to me that they got to know him, and that he got to know them, and it breaks my heart to think he ever felt he was a burden on me. but, it was hard to find things to say to him and there was a wall of awkwardness between us. last year i tried to convince him to let me take pictures of him. not an elaborate photo shoot or anything, just a few photos. his response was, “so you can have something to remember me by?” or, “what, for my memorial service?” i mean, what do you say to that? i’d say no, i just . . . want a few pictures of your face. your face, right now. i take pictures of things that i like, it’s what i do. but he wouldn’t let me. i used my phone and snapped a shot of him looking down, on a park bench one day as we sat in silence staring at the lake.
three days ago, as i was walking down the very, very long hospital hallways after having gone to see him – i took this picture. he went into a coma last weekend. the tumor was growing and causing his brain to move around, and as things expanded, it sent him into a coma. they said it would keep expanding until it broke his spinal cord, and he would die. there wasn’t anything they could do, it was just his time. i stood by his hospital bed and held his hand, and told him how much i cared. i tried to say goodbye to him but i couldn’t say the word. i didn’t want him to hear me say that, i know he could hear me. he squeezed my finger, i know he did. he did it twice. i knew all of this was coming but you just never know how hard something is going to be until you are standing in the middle of it. i took this picture as i was leaving the hospital, knowing it was probably the last time i would ever see him. i saw this painting of a beautiful tree, it made me stop and stare. it was hard to focus on through tears but it helped me to feel more calm, and to start to feel the peace of saying goodbye. i took a picture of it to remember that feeling, and hopefully to feel that peace as i go through this.
taking pictures of things brings a calmness to my mind, a sense that i am doing something right with my time. this experience with todd has suddenly come crashing into this project about scars in a profound way and i know that as i spend the day shooting for the project on sunday, the day after he is laid to rest, it will be with different eyes. i hope that what i capture will help ease someone else’s pain, as i will lean on it to help me with mine.
Of Scars would like to take a moment to congratulate our first model, Bonnie, on three years cancer-free. Here’s a picture of her doing the first Race for the Cure after her surgery. What you can’t see is that at the time of the race, she still had drainage tubes from her mastectomy. Kick-ass woman, no?
Which brings me to a fascinating discussion I had the other night at the 318 Cafe in Excelsior, Minnesota. I was introduced to an awesome woman named Jessica, whose mother is also a survivor. Jessica told me stories about how tough her mom was during her treatments. I responded with, “Sweet. My mama went to a garage sale on the way home from her mastectomy.”
It was a funny, tender and perfect example of a sisterhood that embraces every woman on the planet: We were bonded by the strength of the women around us. It rocked.
Of Scars would love to honor the women in your life, too. We want to know about the beautiful, strong, kick-ass survivors in your world. Send pictures, stories–whatever you got–to ofscarsproject(at)gmail(dot)com. We want them all to have a moment to shine, and we want to remind ourselves that our experiences, while unique, are universal, too. And frankly, that’s magic.
we recently bumped into an old friend, pilates teacher Peggie Zoerhof. her company is called The Intelligent Body and she has a pilates program for breast cancer survivors called the Pink Ribbon Program – the focus of it is to “offer strength, self-esteem and quality of life to breast cancer survivors.”
physical fitness is a tremendous part of daily overall well-being, and regaining the strength and flexibility after any surgery is a challenge. but do you just hop back over to the gym after a mastectomy? what about how you feel in the locker room? or the pool? i imagine for everyone, getting back into a fitness routine will take different forms and everyone will have different comfort levels – just as they would without the burden of cancer. this program is noteworthy because it is a safe and positive place to get back into a routine, and to have some targeted help with your body post-surgery. Peggie is a kind and gentle woman and thoughtful teacher.
Peggie expressed to us an interest in forming a pilot group for survivors, to build interest in the Pink Ribbon Program locally. Here’s what she is offering:
“If you know as many as four survivors who could agree on a time, I would like to put together a pilot group. Tuition would be free for this first group with just the cost of the exercise manual (pictures and directions for them to take with them) which is about $25. The six week session would be proceeded by a 45 min. private consult to allow me to fully understand their history. The six classes would be held in my home studio with the hope that participants are then able to graduate to a beginning Pilates class. Each session will last about 30 minutes. The 45 min. assessment for each participant will be scheduled at their convenience sometime before the start of the first class. If the first class could start around April 26, the session would be done in time for the start of the summer sessions.At first blush, a 30 min. session does not sound like much unless we consider that the program was designed for those who are about 6 weeks post op. That said, anyone who struggles with lack of range of motion in the shoulder (due to breast cancer procedures) would be a good candidate. Any candidate should be sure to have clearance from their doctor before starting.”
We’ve been busy.
Personally, we’ve been busy. In the past three months, two out of the three of us have moved. There have been vacations, school changes for kids, and the annual Minnesota round of Sick Kid Month.
What’s amazing about this project is that, despite our tendency to step back every now and again, Of Scars moves forward on its own momentum.
We’ve received offers of legal help and fiscal sponsorship. We’ve met astounding people who are currently holding our hands as we embark on this adventure. We’re learning so. much.
Enter Kate-Madonna Hindes, a nationally sought-after speaker and writer who is, incidentally, a cervical cancer survivor and a spokesperson for the National Cervical Cancer Coalition. The existence of ladies like her makes me proud to call myself a woman, and she’s graciously offered us a number of opportunities. Among them, a guest spot on her blog–check it out!
We’re so very grateful to the women, men and organizations that have approached us with their support, so we wanted to take this opportunity to say a heartfelt THANK YOU!
And, in that spirit, we’d like to invite you to notice the people who’ve held your hand along a journey, in whatever form that may take. Find ’em today, and thank them. Guarantee you it’ll brighten your day!
A few years ago, when my mother was about to have her mastectomy, I stumbled upon an article about a woman who’d been arrested for swimming topless at her health club pool. The woman in the story had recently had a bilateral mastectomy without reconstruction, and discovered that in the absence of breasts, bathing suits irritated the skin on her chest. She found suits that were made to hold prosthetic breasts, but suits made for women with no breasts whatsoever didn’t exist. And so, in the interest of comfort and with the absence of breasts, the woman decided to buy a pair of swim trunks and skip the pointless suit altogether.
Another woman at her health club called the police, and the swimmer was arrested for indecent exposure.
I remember being floored. What could possibly have been indecent about that? She didn’t even have breasts!
I think that was the first time that I connected breast cancer awareness with feminism. That woman wasn’t arrested because she was exposing anything indecent. There was nothing to expose!
She was arrested because she refused to follow the unspoken rules: as a woman, it is your job to make the people around you comfortable with who you are. And her scars made someone uncomfortable.
We are conditioned to believe that our beauty lies in our ability to bring aesthetic pleasure to others. We’re taught never to leave the house without makeup, just in case we run in to Mr. Right. We spend childhood daydreams imagining our wedding dresses. Come middle age, we spend our hard-earned money on wrinkle creams and Botox. We’re taught to look beautiful. And we’re taught that beauty is in the eye of the beholder.
But what if that’s not true? What if the things that make me beautiful are things with which you’re uncomfortable? What if the beholder doesn’t matter, because the things that make me beautiful are an intrinsic part of who I am?
I suspect that it was fear that caused the swimmer’s arrest. Her scars reminded people that they, too, were vulnerable. Their discomfort caused them to miss the most beautiful thing of all: that she had survived a life-threatening illness, and was able to find joy in her new body!
Tonight, I poured myself into the search for that article and came up empty-handed, but I was delighted to stumble on this message board. In it, survivors debate the merits of mowing the lawn topless or sunbathing topless in the yard. It’s funny, and tender, and sweet, and a lovely contrast to the story for which I was looking. As I read, I found myself so proud of women who are able to show themselves as they really are, and not how others think they should be.
I wondered, What if we all lived our lives like that? What if we focused less on what looks beautiful, and more on what is beautiful? How would we be different?
oh, wait! we have a blog?
we just came up for air and remembered, it probably doesn’t really look like we’ve been doing much. actually, we’ve been doing so much that we haven’t had time to tell you about it – so here is a quick update.
- we are shooting all day this sunday! we are so excited. two amazing survivors that were among the first to respond to our ad on craigslist for willing models.
- we have a meeting in the next couple of weeks with springboard for the arts, to discuss some non profit options and get some advice.
- we are working on some interviews with people that have inspiring perspectives about breast cancer survival, and we are excited to share that with you.
- we have at least 6 other people on board to do photo shoots, and have been brainstorming ideas for upcoming shoots. we are closer to nailing down details for where our first show will take place – more on that as it unfolds.
keep your feedback coming, and please see our FAQ page if you are interested in participating in what we are doing!
I guess my mother was lucky. Cancer never endangered her life. Not in the traditional sense, anyway. For her, recovery was never a question. A few months scattered with some slightly unpleasant procedures (biopsies, surgeries, tubes, needles), a new prescription or two and a couple of gut-wrenching decisions (mastectomy or lumpectomy? reconstruction? when?), and they told us she’d be fine. It was never an easy journey, to be certain, but Mama never had to fight for survival. We all had the blessing of knowing she’d be with us tomorrow.
No, cancer never endangered her life in the traditional sense, but it robbed her of the years when many of us take life for granted in our innocence. Even in the best of circumstances, cancer turns your world upside down. It changes every relationship in your life. You learn to trust strangers in scrubs. You learn to question conventional wisdom. You find out how to tune out the voices of those who think they know best, and to listen to yourself when you do know best. You wrestle with the idea that your body has betrayed you, and struggle to learn to trust it again. You learn to live with the idea that in one unexpected moment, the world as you know it can change completely.
This April, Mom will celebrate three years of cancer-free living. She’s always been a strong lady, but this season of her life has revealed courage and a depth of character I’d never witnessed in a woman before. These days, it’s no big deal for her to undertake adventures of which most people will only dream. She’s climbed Kilimanjaro. She’s made public appearances, sharing her cancer story with various women’s groups. And last Sunday, she became the first model for the Of Scars project.
Mom, known as Bonnie to the rest of the world, has spoken publically and somewhat extensively on the importance of her support network throughout an experience that made her feel very isolated. So it was touching that she brought her support network with her to the photo shoot. Dad hung out and chatted with her throughout the afternoon, offering comic relief and a ride home for my mother, who brought a bottle of wine to take the edge off of posing topless in a public forum. Wise woman. I nabbed a glass to take the edge off of photographing my mother topless in my living room.
Pamela Cariveau has graciously offered to do hair and makeup for our photo shoots, and did a magnificent job of making Mom look like a stone-cold fox. Later, Mom commented that Pam’s nurturing spirit made her feel more secure, which is relatively important when you’re about to pose topless.
Meanwhile, elli and I were converting my living room into a photo studio. There’s something magical about building a set in a space that you love. A white backdrop and a few lights, and you know magic is about to happen in your place. It’s kind of indescribable. Compounded with the fact that I was shooting pictures of my mother, with my very dear friend elli, it was a pretty emotional afternoon.
We took a few test shots, and then went to work doing our best marker graffiti on my mother. See, the morning of her mastectomy, she asked me to write a phrase across her chest: Breasts Are Not For Saving. Women Are.
For Mom, those were the words that served as her mantra during her recovery. It was a reminder that her breasts were not her essence. Surgery might remove tissue, but it could never take her femininity, her beauty or her spirit. “That’s what I think I learned from cancer,” Mom would say later. “My flesh was separate from my spirit. I had to remove the flesh to save the spirit, and that’s a sacrifice worth making.”
And so our project began. It is our goal to ask ourselves and our culture to re-evaluate our opinion of scars, and I think this photo shoot was a tremendous start. My mother was asked to choose between spirit and flesh, and she chose spirit. The body left behind by that decision is among the most powerful artistic statements I’ve ever seen.
Next time, we shoot photos of a stranger. I’m a little nervous about keeping our next model as candid and comfortable as my mom, but I’m also very excited to discover the wisdom of another beautiful body and the soul that drives it.
If you know any breast cancer survivors who’d like to challenge the way society sees their scars, have them contact us via email at OfScarsProject (at) gmail (dot) com.