Beauty, Actually

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.

the male role & perspective in the battle: interview #1

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.

josh berg as a teenager w/grammy (jurassic park tie)

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.