[Maybe you saw the above SCAR Project image when it went viral on FB in October of 2012. The post accompanying the picture asked: "How Many Likes? For this courageous breast cancer survivor?" Maybe you even liked it? Maybe you didn't know it was one of David Jay's SCAR Project Portraits? (The post didn't mention him, The SCAR Project, or the woman's name.) Maybe you wondered if the girl in that picture knew she got millions of Likes? (She did know, btw.) But maybe mostly, you wondered about the young woman in the photo—the 1000 words behind her picture. Today's special guest post is by the courageous breast cancer survivor in that picture, which has been Liked and Shared and Commented on, around the world and back. If you happen to be catch one of the upcoming SCAR Project Exhibitions in Toronto or Los Angeles, maybe you'll catch the girl in the picture, standing next to hers.]
Guest Post by SCAR girl Candice M.
Dog food, dog food… which should I get? Too many choices… Ring tone called Island Breeze sounds off in my pocket. I can’t even hear it, but because it’s called Island Breeze, I should have been transported to an Island. This is just my opinion; though my opinions never seems to take hold in ways I want them to. Technology. Hearing people always ask me if I set my phone on vibrate. I’m surprised they don’t know the answer to that so I say, “Yes of course then I put it right… down… “. At least I make them laugh. I see it’s a local number so I know it’s not a telemarketing call. Shoot, I hope it’s not the doctor. It’s too soon, he’s supposed to call, like… never. I fiddle with my hearing aid, am I gonna hear him? Oh I hear him alright. Well not the first time but I didn’t have to. He wasn’t going to call if there was nothing wrong. Silly me I thought he was going to make an appointment and meet me in the office like on T.V. Instead, he tells me over the phone, point-blank. Was that a 9 millimeter? Nope, AK-47. And there’s no dramatic fade in or fade out or music, not the whole town running in to see what was the matter, nothing just a big fat row of dog food at the pet store. Oh, Kirstie Alley if we could just go to a place where Nobody Knows My Name…
I scream. I can’t even remember what day that was. It was my daughter’s birthday, I think, or the day before. Oh fun. I also got pulled over, screaming all the way home, illegally calling my mother at the same time. Big black cop doesn’t know what to do with a screaming white girl in the middle of the ghetto but he does manage to let me know I ran a stop sign. I’m sure he loved my response, “I have CANCER what am I going to do??!?” Dumb look on his face…
“well… m’am you still can’t run a stop sign.”
He fiddles, he’s nervous, he doesn’t know what to do. Awkwardly, he slowly backs away from my crazy screaming and crying, and decided a ticket wasn’t what I needed at that time. Good for him, two people survived that day, not just one. I got what I call two chemo tickets in the following two months anyways. My head wasn’t on the road. How could I? My head was… am I going to be alive, will my child have a mother? Its amazing that I survived not just cancer but also my own driving. Yes, unfortunately for you, I still have my license. Yes it’s safe to get in the car with me, just not on days I’m diagnosed with cancer or in a chemo fog, ha!
I have angels watching over the car so don’t worry, come join me for a ride because this is one helluva rollercoaster ride. Stage III. Really?! Ok, I acted surprised, I tried not to be surprised, but I really was surprised anyways. Damned thing was supposed to be a CYST, not cancer!
The part of me that wasn’t suprised that it was so late-staged was because I had been trying to find out what was wrong with Ms. Leftyboobie since I was a kid.
Yes, I said that right, a kid… I told a doctor when I was 17 my breast didn’t feel right. Age 21, I told a different doctor that I was “leaking” fluids. Age 26, I went for a fibrocystic breast study, and no one saw a problem with Ms. Leftyboobie, really?! Then Ms. Lefty B decided to let herself loose at age 29, which led to a 6cm cancer retrieval at age 30 because I guess I was “old enough”. I don’t think I finished blowing out the candles.
Young ladies, you can and you are old enough for breast cancer, no matter what anyone tells you. I found a doctor who saved my life. He said, “I know you aren’t due for a check-up but I’m gonna check ya anyways.” I roll my eyes, oh puhleeeeze. He gets to second base, faster than anyone I have ever met… well, mostly everyone. *wink* I let him find it, I think, go, have at it, thinking he won’t do anything anways, I don’t say a word… instead, he freaks out and says, “You gotta get that checked!” I just glance at him, and with an air of boredom, I drawl almost a whine and ask for the millionth time, “Please, I want a biopsyyyyy.” He says, “Ok.” I say, “Did you just say ok?!” Doth mine hearing aid and lip reading fail me?” (I didn’t actually say that last part). He hands me the slip, I run off to a whirlwind of appointments. It’s just in the nick of time…
Because, here I am five years later celebrating my life and watching my daughter blossom into this gorgeous young lady (and no I’m not one of those parents that just says my kid is the cutest because my kid actually IS the cutest. I have evidence to back that up AND testimonials*.) I have to say going through all that and losing my breasts was devastating. But it taught me how to love myself better, to see that I’m still beautiful. I can prove it via The Scar Project. The photo you see is the very first time I showed ANYONE my scars. I had a little birdie, my breastie bestie, Jolene, who whispered to me that I could do it, and she stood by my side.
I miss her, and losing her still hurts me something good, but I would never trade meeting, loving, and knowing my Pink sisters, for anything.
I prefer to think that Jolene was reborn into this really amazing place with tons of loving people, cheese and crackers galore. I’ve met some really incredible people on this journey. It made my little deaf-brokenboobie life fuller, and worth surviving for. It opened up my eyes to a whole world that many people don’t understand or choose to see. I actually had people say to me, “I wish I had cancer then everyone would pay attention to me” and equally as shocking comments/statments. Also, I didn’t really get attention, instead, I was told by people, to get over it. Regardless, I would never want to feel so sick or so scared again, for any kind of attention.
Breast cancer isn’t a pink ribbon. It’s losing yourself, becoming so sick that your family gets shattered to pieces with you, rediscovering yourself, finding your words, discovering that hair does grow back even if curly and unruly, it does grow back. I ask myself every day could I do that again? I watch my friends doing it. I don’t know. It’s really that hard, so while you are waving a pink ribbon, instead go and really get involved. I had little to no support. Real pink ribbon support should mean help with cleaning, making meals, taking the dogs out, or helping me get out of bed on the days I was too weak to pull myself up, not just a piece of fabric or a specific color or logo. Donating money is nice, make sure you know where it’s going and what they are doing with it. But know what’s really fantastic? Food for my kid, and clean clothes too. Even more wonderful?? Someone to sit next to me for a little while so I’m not so scared.
I look over at my daughter who is sitting and reading quietly, yeah I definitely could do it again. She’s my reason for everything. I shove soy and vegatables at her. Thankfully, she welcomes the healthy food jumble that I foist upon her. She’s a beautiful soul, and a fighter too, but this is one fight I do not want her to face, and through The Scar Project, I am hoping to make that difference for her, not just to be my own voice, but to be hers too. I’m not who I was before, but I am still me (just waaaay better and sexier), and this is my new normal. I am not breast cancer and breast cancer doesn’t define me. Oh and one more thing, reconstruction is a choice. This whole “I love boobies” campaign isn’t the right path. Can’t we all say, “I love women”? That’s what we are trying to save here, right? I will end this with one of my favorite quotes from one of my scar project sisters, Keiko:
“I used to be sad about the scars that run across my chest; now I feel they are a roadmap on my journey of survival.”
*For the record, Candice is in no way exaggerating the ridiculous cuteness of her daughter. I met Sky at a SCAR LA fundraiser and fell immediately head over heels over this enchanting child. Holy crap, we all did. It couldn’t. be helped. She’s that stinking cute.
THE SCAR PROJECT ANNOUNCES TORONTO PREMIERE OF THE INTERNATIONAL EXHIBITION—MARCH 28-APRIL 6, 2014
March 3, 2014—The SCAR Project, the groundbreaking photographic exhibition created by fashion photographer David Jay is set to premiere March 28 at Edward Day Gallery, 952 Queen St West, Toronto Ontario.
The SCAR Project is a series of large-scale portraits of young breast cancer survivors. On the surface an awareness raising campaign for young women, The SCAR Project’s deeper message is one of humanity. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images transcend the disease, illuminating the scars that unite us all.
Sponsored by Rethink Breast Cancer, the world-renowned exhibition will open this year’s Breast Fest on March 28, 2014. This marks the first time the exhibition will be shown to Canadian audiences. The gallery will be open for public viewing March 28-April 6 (closed Monday). Gallery hours are Tuesday-Saturday, 10:00 am – 6:00 pm, Sunday by appointment. Admission is free.
A screening of the EMMY Award winning documentary about The SCAR Project: Baring It All will be shown at the Bloor Hotdocs Cinema at 3:30pm on Sunday, March 30. Tickets are $10. A Q&A session with David Jay will follow the screening. www.breastfest.ca.
For more information please contact :
Jennifer Rashwan, Touchwood PR 416.593.0777 x 205, firstname.lastname@example.org
Alma Parvizian, Touchwood PR 416.593.0777 x 202, email@example.com
For more information on Rethink Breast Cancer visit www.rethinkbreastcancer.com
[Today's guest post is written by Debi Memmolo, breast cancer survivor and friend of David Jay, in response to the most recent removal of SCAR images from Facebook.]
Just after my 38th birthday, I had the life-changing pleasure of attending an exhibit of The SCAR Project, a series of large-scale portraits of young women confronting breast cancer, shot by fashion photographer David Jay. I saw myself in each of these women. I saw, in real life, the ravages of this disease. I saw beauty. I walked away with an invaluable gift: I do not need breasts to be beautiful.
A few months later, I too had my breasts removed to fight the cancer that was growing inside me. Yes, I had them “reconstructed,” but what remains on my chest are two, uneven mounds covered in taut skin and some scars. As it turns out, this now gives me the legal right to walk down the streets of New York City bare chested. (Nudity, it turns out, is defined as exposure of a woman’s nipple.) Well, aren’t I lucky?
This week Facebook removed the SCAR Project’s photographs, posted to honor one of the SCAR girls in light of her recent passing, February 23. Hundreds of followers of The SCAR Project wrote beautiful messages upon seeing these photographs (while they were still up) and hearing the news of her death. And then, without warning (or apparently a deep thought), Facebook took them all down and locked David Jay out of his own page. Why? Because nipples are improper nudity on Facebook and a hint of one of Vanessa’s nipples was in one of the images.
With some protest, some (not all) of the images were replaced. David was still denied access. I may have left this alone, but then I learned this was not the first time Facebook acted this way. In fact, it has happened several times. In mid-2013, there was a media frenzy regarding Facebook’s policies and its impact on The SCAR Project and young women with breast cancer. Facebook reversed itself then too. Nothing really changed though.
It is, perhaps, not fair to hold Facebook accountable for this action. I do not think that its policies are aimed at maligning the goodwill served by such things as The SCAR Project. This is clearly a response to something larger in our society – the female nipple and its tie to sexuality.
Innumerable people have asked me why I have not decided to have nipple reconstruction. (The “reconstruction” is performed either by twisting and stitching skin or getting a tattoo of a nipple). I am truly dumbfounded by this question. My nipples served their purpose: I had the immense fortune of nursing two children with them. Now, this disease has taken my fertility and the utility of a nipple.
And I do not need nipples anymore. While nursing, my real nipples were exposed in some of the finest restaurants, from coast to coast. They also were out on airplanes, on the side of the road and, in moving vehicles. No one seemed aroused or stimulated by the sight of a woman using her breast for its intended purpose, feeding her young.
The right to breast feed in public has seen its day in the media, but those battles, too, did not really get to the point. Why are we so fixated on the female nipple? And why is it so different from that of the male?
We are living in modern times, with modern sensibilities. This is not the Victorian Era. Why are we still struggling to acknowledge that exposure of a female nipple can, perhaps, be no less pornographic than the exposure of a man’s? Why are we still objectifying body parts?
A prosthetic nipple will make me no more or less a woman than I already am. Despite my SCARs [Surviving Cancer.] [Absolute Reality.] I am, after all, still a woman.
[Debi Memmolo lives in NYC and spends her days raising her two young children. Prior to battling cancer and being a full-time mom, Debi was an elementary school teacher, technology marketer and certified public accountant. She thinks a lot about writing but rarely writes.]
[Today's guest post is from my beautiful friend/SCAR sister Jocelyn. I met Jocelyn while producing and promoting The SCAR Project Cincinnati Exhibition. Jocelyn's stunningly beautiful SCAR portrait, taken with her stunningly beautiful daughter, Nayilah. The cool thing about this portrait, is that it was actually taken during the Cincinnati exhibition, in one of the gallery, which we walled off and turned into a photo shoot area.]
Guest Post by Jocelyn Whitfield Banks
This blog is in tribute to The Scar Project and to that frightening, but awe-inspiring moment when I took off my clothes for fashion photographer David Jay, allowing him to photograph my scars from mulitple battles with breast cancer. In 2002 a diagnosis of an aggressive breast cancer prompted the decision for a bilateral mastectomy just 30 days after my 25th birthday had come and gone.
After a second diagnosis, seven reconstruction surgeries later, and hundreds of thousands of dollars in hospital stays I am in awe of the nearly 70 inches of scars running across my trunk, my abdomen, my hips, and my new breasts. The process at times has been exhausting, overwhelming and just plain tough. At other times it has been exhilarating, and encouraging to see the inner-strength that I have as I “dig deep” for the determination to beat cancer and not let it beat me.
Some would believe that all of those post-mastectomy scars might make me “damaged goods” but I’m a firm believer that those scars are an outward and physical sign from my body that says “I may be injured, but look at me. I am healing”… Where there are scars and cuts and stitching, there is inevitably healing going on in the body. The initial trauma is over, the wounds have scabbed over, and the production of collagen to repair all of these incisions is hard at work making the parts of the body that have been cut, moved, and stitched back together heal and find their new norm in both form and function. Yes, that dark railroad of lines running across me say to me that my body is healing and we’re going to be OK…
Baring my Scars for all of the world to see was the single greatest indicator for me that I was healing on the inside too. In the pictures of all of these beautiful women, their scars show the physical trauma they each have endured, but it is The Scar Project that captures and displays to the world, the emotional trauma inflicted by breast cancer. The courage, the strength and the determination required to fight this disease are one thing, but the courage to go forth and expose both your vulnerabilities and your triumphs to complete strangers are what makes The Scar Project images so moving, so riveting, and so awe-inspiring. That moment when I proudly shared my scars to show the world that “Breast Cancer is Not a Pink Ribbon”… Well that was the moment I realized that Where There Are Scars… There is also Incredible Healing happening not only on the outside, but all over the inside too.
Our children and our loved ones need an outlet for healing too. That’s why I’m so proud to be part of a nationwide effort to support families fighting breast cancer too. Visit Mommy Has Breast Cancer for more information regarding this great 501c3 charity and for ways that you can get involved in the fight too.
[With all systems GO for The SCAR Project Exhibition to premiere in Houston this week, I am happy, honored, humbled to hand over the SCAR blog mic to CEO and Creative Director of American Art Resources, Kathy Hathorn. An innovator and pioneer in developing patient-focused art programs for healthcare facilities, Hathorn is an authority in art and its impact on patients in healthcare settings. Other signature projects, besides her work with MD Anderson Cancer Center, includes: Celebration Health, Northwestern Memorial Hospital and Prentice Women's Hospital, Phoenix Children's Hospital, Duke University Cancer Center and the new Parkland Hospital. She sits on various boards and councils related to healthcare research and design, and lectures both in the US and abroad as an expert in evidence-based art programs. In 2001 Hathorn co-authored the Evidence-Based Guidelines for Selecting Healthcare Art with Roger Ulrich. She founded the RED Center whose original research has been published in peer-reviewed journals and in Joint Commission's Environment of Care. Hathorn has been featured in Business Week and The Coolest Entrepreneurs in America, and was named one of the 25 Most Influential People in Healthcare Design in 2009. She was the 2011 recipient of the Symposium Distinction Award. She was commissioned in 2012 by the National Academy of Sciences in Washington, DC. to write a white paper on the effects of art on the aging, due for publication in 2013. Besides all that, Kathy Hathorn was instrumental in bringing The SCAR Project to Houston.]
Guest Post by Kathy Hathorn
An authority on art and its impact on patients in healthcare settings, I am frequently asked by my healthcare clients, if a particular work of art is appropriate to display or include in a hospital’s art collection.
I had a unique experience a few months back, when MD Anderson Cancer Center’s Dr. Oliver Bogler asked me to review the work of New York photographer David Jay.
I replied that MD Anderson doesn’t have a rotating gallery space but that the work HAD to be brought to Houston. Hands down, The SCAR Project was the most incredible work I had ever seen!
I have always been drawn to figurative black and white photography—it draws me in in a way that no other genre ever does. David’s work has the raw brutality of Diane Arbus’ work but it envelops the viewer in a passion of love, respect, and admiration. Instead of detachment and alienation that viewers can feel about Arbus’ work, these pieces bring out every shred of humanity in the viewer who wants to reach out to each of the subjects and say, “You are beautiful….”
Bringing the work to Houston became a personal mission. My first thought was that Gremillion Gallery had the perfect exhibition space for the large format works. I also knew that the gallery has been incredibly generous in lending its space to various charitable events over the years. It was a quick and emphatic yes when I asked Ron Gremillion and Chris Skidmore if they were interested.
It must have been serendipity but as soon as there was a fabulous exhibition space, there was also funding to bring the show to Houston! Pink Ribbons Project, a breast cancer survivor non-profit organization, generously agreed to underwrite the hard costs of the exhibit. The show premieres at a private gala event this Thursday, October 17, and runs through October 28th. There are numerous public-service events planned around the exhibit including lectures by both the artist and various breast health experts. Click HERE for the exhibit schedule and ticket information.
The message of the work is undeniable: David Jay has captured the harrowing beauty, dignity, courage and strength of young women dealing, living, and thriving after breast cancer surgery. Both his passion and compassion are piercingly apparent to the viewer.
Guest Post by Oliver Bogler
“When I grow up I’m going to be a photographer.” That’s what I used to tell my kids, when they were at the age when saying it seemed to be enough to get you there. Now I’d add: “… a photographer like David Jay.” And by that I mean successfull, visionary and socially engaged.
I’m not kidding anyone of course, least of all my children. First of all, I’m never growing up! And secondly, I’m in my late 40s, enjoy my career in cancer research enormously and frankly lack the talent required for art. But photography is a passion of mine, mostly as someone who loves the art form and a little as someone who takes pictures. When I go to art museums I head straight for the photography section, and when I travel the world I often seek out photography above all other sites to see.
So following my diagnosis with breast cancer in September of 2012 I began to become interested in the intersection between this disease and photography. To say that there are a lot of breast cancer images out there, is an understatement in the age of digital photography, and much of it is in the vein of pink. In this landscape the SCAR Project stands out as a beacon of frank art. The first time you see it, it hits you. And that is saying something in an age when visual impact has become significantly blunted by the sheer volume and ever increasing shock value of the media that saturates our culture.
The SCAR Project portraits have an honesty and simplicity that create a connection between the viewer and the subject. The images of young women, bearing scars, are compelling, and draw you in to try and understand their loss and what it means to them. They are also beautifully made photographs, by an artist with a sure eye. The Project has evident integrity. And its goal, to raise awareness that young women do get breast cancer, that the disease does not respect age, is important. Wherever the images appear they accomplish their goal.
In the Fall of 2012, from my freshly diagnosed perspective, the one thing I thought that was missing in the SCAR Project was men. Just as David says “breast cancer is not a pink ribbon”, I say “breast cancer is not a women’s cancer”.
One in every hundred people with breast cancer is a man. Sure that is a pretty small number, but it is not zero. And men are another segment of the breast cancer world where raising awareness is still urgently needed. Men routinely ignore their symptoms, and are diagnosed later with poorer outcomes because of denial and ignorance.
I am still a little stunned that David agreed to consider men as subjects for his work, and has started a connected body of work, the SCAR Project: male breast cancer. Stunned and deeply grateful. This new work focuses on men of all ages, and they are mostly older than the women in the SCAR Project. That’s because men with this disease are older, and because the goal is to raise awareness for all men. Amongst women, the focus is on younger women, where awareness also lags behind. This male breast cancer work is still in its early stages and I am excited about its future.
As a result of our discussions around men with breast cancer, I was lucky to become acquainted with David and the SCAR Project team, and the idea of bringing the work to Houston was born. Susan Rafte of the Pink Ribbons Project came aboard early, and her foundation which works at the interface of art and breast cancer is the sponsor that is making it happen. Gremillion & Co. Fine Arts generously offered their gallery space for the exhibit. And Kathy Hathorn and American Art Resources are supporting the project too, both by connecting us all and by providing resources to get the pieces hung in the gallery. Now a large team of volunteers is helping make 10 days of viewing and events a reality. In October the SCAR Project will be in Houston for 10 days of exhibits, expert talks from doctors and survivors, chances to meet some of the women photgraphed in the Project, and to hear David talk about the work. There is also a showing of the award winning documentary about the SCAR Project, called Baring it All, at the Museum of Fine Arts Houston.
Please join us. Details of the activities are HERE.
[About Oliver: Dr. Bogler studied Natural Sciences at Cambridge University graduating in 1988, and then completed his PhD at the Ludwig Institute for Cancer Research, University College Branch in London, in 1991. Following a post-doc at the Salk Institute in Developmental Neurobiology, he rejoined the Ludwig Institute, at its San Diego Branch. His first faculty appointment in 1997 was in the Departments of Anatomy and Neurosurgery at Virginia Commonwealth University in Richmond. In 2000 he moved to the Hermelin Brain Tumor Center, Henry Ford Hospital, Detroit and was promoted to Associate Professor in 2002. In 2005 Dr. Bogler joined the Department of Neurosurgery and the Brain Tumor Center at the UT MD Anderson Cancer Center as Director of Basic Research, and was promoted to Professor in 2009. His research was focused on EGFR signaling in glioma and novel platinum compounds. In July 2010 Dr. Bogler accepted the position of Vice President for Global Academic Programs where he manages academic relationships spanning over 30 Sister Institutions in 20 countries on behalf of MD Anderson. In September 2011 he was also appointed Senior Vice President for Academic Affairs, and now focuses on overseeing the 300 people organized into 16 departments in this division, who deliver support for the more than 5,000 academic personnel at MD Anderson and are the stewards of our education mission. He is married to Irene Newsham, PhD, a cancer biologist also working at MD Anderson, and they have two children, aged 10 and 11.]
Follow Oliver’s blog HERE.
THE SCAR PROJECT: BREAST CANCER IS NOT A PINK RIBBON
TO PREMIERE IN HOUSTON, TEXAS OCTOBER 17-28, 2013
Houston, Texas—September 23, 2013—The groundbreaking photographic exhibition shot by fashion photographer David Jay is set to premiere at Gremillion & Co. Fine Arts Gallery, 2501 Sunset Blvd., Houston, TX 77005: The SCAR Project: Breast Cancer Is Not A Pink Ribbon.
The SCAR Project is a series of large scale portraits of young breast cancer survivors shot by fashion photographer David Jay. The SCAR Project is an exercise in awareness, hope, reflection and healing. Presented primarily as an awareness raising campaign for young women, The SCAR Project’s deeper message is one of humanity. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images transcending the disease, illuminating the scars that unite us all.
The exhibition opens October 17, 2013 with a special evening reception hosted by The University of Texas MD Anderson Cancer Center. Invitation required. For information, please contact: firstname.lastname@example.org. The gallery will be open for public viewing of the exhibition October 18-28 (closed Sunday and Monday). Gallery hours are 10:00 am – 5:00 pm. Admission is free. Scheduled events: TBA. A screening of the EMMY Award winning documentary about The SCAR Project: Baring It All will be shown at the Museum of Fine Arts on Monday, October 21. A detailed listing of the Houston exhibition schedule of events, with links to R.S.V.P. is available via The SCAR Project’s Exhibition Page.
Sponsored by: The Pink Ribbons Project (www.pinkrobbons.org).
Special thanks to Gremillion Gallery for donating the space and a special thanks to Kathy Hathorn.
[When I stood before my guest blogger ‘s SCAR portrait at the first SCAR Project Exhibition in NYC in 2010, it was the first time I really faced another woman whose [Surviving Cancer.] [Absolute Reality.] looked like mine. I knew so little about breast cancer when I was diagnosed in 2008, that I didn’t know that no reconstruction was even an option any woman ever opted for. The one woman I knew who’d had a double mastectomy, did it prophylactically with immediate reconstruction. In my case there weren’t really options. The best course of action was to wait until after surgery and chemo, to evaluate the reconstruction question: 2B or not 2B? When I met Toni at the Cincinnati Exhibition I produced in 2011, she was still the only other woman I knew who had been there, done that, had to buy a flat new t-shirt like me. I was eager to learn her story, and to share it here. Now, especially in light of the recent Facebook controversy over SCAR images, and of upcoming exhibition news, I’ve asked my flat and fabulous SCAR sister Toni G. to share her SCAR story. As The SCAR Project exhibition will be premiering in Texas this fall, it seemed fitting to lead up to that with the story of the Lone Star SCAR girl. As she is a science teacher, Part I dealt with the Gravity of cancer. Part II is likewise aptly titled Force.]
Guest Post by SCAR girl Toni G.
After being diagnosed with stage 4 breast cancer at 28 years old, I found my life moving down a new path, even as the geography of my body was being redefined. My dream of being a scientist and having my own lab was no longer a priority like it was in my before cancer days. Being alive, and enjoying life, was. Being a positive force despite the cancer, was too.
In the days and weeks that followed my diagnosis I felt lost. There was an abundance of breast cancer information out there but only a fraction of it was relevant to my situation. I tried to find information from other twenty-somethings fighting cancer while still finishing their degrees. And still dating. And without children. Cancer was forcing me to make some of the most difficult decisions of my life. Sifting through the mountains of information to find the right answers for me felt isolating, was time consuming and emotionally exhausting: Erosion.
One decision was what to do with the breasts that were trying to kill me. I knew without a doubt they had to go, but what would I put in their place? After meeting with a plastic surgeon I knew my reconstruction options on paper, but one size doesnʼt fit all. At the time, I knew I wanted breasts, but I couldnʼt picture what my new breasts would, or could, look like. Expanders? Implants? With or without transplanted belly/back/butt tissue? Another twelve inches of scars on my body? Tattooed nipples? I tried to find pictures online to help make this decision, but there were surprisingly few resources available showing real post-mastectomy pictures. Especially in younger women.
One day on the Komen message board a photographer named David Jay posted that he was looking for young breast cancer survivors to participate in “The S.C.A.R. Project: Surviving Cancer, Absolute Reality”. After an inquiry he told me he wanted to portray through photography the cancer experience by showing the visible scars that are symbolic for so many women. He wanted to show the world exactly what I had been looking for. I immediately knew I had to be a part of this unique awareness project. To help other young women who are feeling lost, facing the same reality. To be a positive force.
David and I decided to do a series of portraits….before and after my bilateral mastectomy as well as after reconstruction. In 2007 I flew to New York City with my sister just months before my surgery to do the “before” shot. A year later, after my double mastectomy I flew back to NYC with my father and took the “after surgery” shot. This picture shows my reality: burned from radiation, scars where my breasts used to be and those million dollar chemo curls. These are a few of the symbols in my SCAR portrait. And my sheer determination.
Part of my cancer battle plan involved a clinical trial where I had high dose chemotherapy and a stem cell transplant. With my immune system wiped out I was told reconstruction was going to have to wait a year due to a high risk of infection. A year of contemplating (and stressing over) reconstruction options passed. Then, in the short window of opportunity I had to have the reconstruction surgery, I was offered a chance to visit Peace Corps friends in Mozambique. Reconstruction was going to have to wait some more; I chose Mozambique.
Another year went by and I was still breastless. But by then I knew of other survivors, struggling with pain, necrosis, rejection, infection and many other complications that go along with trying to rebuild a part of your body from unnatural parts. The idea that reconstruction was the only way to go was starting to fade.
The SCAR Project evolved and in October 2010 I returned to NYC with all four of my siblings to attend the SCAR Project exhibition.
I remember walking up to the gallery and seeing the portraits that had become so familiar to me; I’d only looked at them a million times before that night. I felt an instant bond with my SCAR sisters. We shared our stories. We all had similar questions about life after cancer and it was comforting to put bits and pieces of the puzzle together. Especially since we were assembling it without knowing what the final picture looked like.
I didn’t know at the time the impact The SCAR Project would have on me, let alone the cancer community and beyond. I hoped it would change the way people viewed the reality of breast cancer. I hoped it would give women strength to know there is life after cancer, even if it is filled with jagged scars and a valley of doubt. I wanted to be one of those pictures that women could look at and relate. I wanted to be an answer that someone else was looking for.
My hopes for the SCAR Project continue to come true as the exhibit travels, and more and more people find out about it and are inspired by it. It is the powerful force I hoped it would be. And I am so proud to be a part of it.
In addition to NYC I’ve also attended the Cincinnati and Birmingham exhibitions. I’m thrilled it’s coming to Houston this October. Even more thrilled that MD Anderson, the place that played an instrumental role in saving my life, is hosting the opening night.
As far as that “after reconstruction” shot David and I were going to do? Well, I canʼt pinpoint the moment I made the decision not to have reconstruction, but it happened sometime in those years of waiting to have it. It’s such a paradigm shift to have been so gradual. I don’t think I ever really thought of no reconstruction as an option. Our society is infatuated with breasts. “Every man’s a breast man” and 1 woman = 2 breasts…not one or none.
My SCAR sisters have shown me, both directly and indirectly, that I donʼt have to have reconstruction. They encourage me to embrace the new me and to live flat and fabulous like countless other women. And two of my lovely SCAR sisters, Sara and Barbie, have started a Flat & Fabulous Facebook support group for women who’ve chosen against having reconstruction. I continue to find comfort in communicating with women who have walked in my shoes. That finding other women who have walked in similar shoes was so very difficult is the very reason the world needs The SCAR Project. I needed the SCAR Project. And I know I’m not alone.
Guest Post by Lauren Culpepper
[Lauren is the production manager for The SCAR Project, David Jay's right hand, my SCAR Project sidekick, not to mention, the most lovely soul to work with.]
Since The SCAR Project began six years ago, David Jay created a Facebook page for the project. What began as a small page of a few supporters has now become a thriving group supported by over 33,000. David has used Facebook as an immediate way of communicating directly and effectively as he continues his work with The SCAR Project. For years Facebook has randomly and periodically taken down images and banned David’s personal account which prevents him from posting.
It has been an unbelievably frustrating challenge. Every time this has occurred, there is no one at Facebook to contact in order to gain clarity on the image removal or ban. This has turned Facebook into a looming “big brother” for The SCAR Project, not knowing when it will strike again.
This time, however, a woman reached out via Twitter. Scorchy Barrington, currently stage IV and undergoing treatment, created a petition at Change.org on behalf of David and The SCAR Project that created a massive ripple effect with over 20,000 signatures. Two days after the petition was posted, Change.org got behind the petition, Facebook’s VP of global policy requested to speak to Susan and David, and a conference call was set up with Susan, David, Facebook, and Change.org. It was an extremely beneficial opportunity to listen to one another and have a chance to communicate directly. The following week, Change.org, Susan, Facebook and David exchanged emails editing what would become the new policy that you now
see on Facebook’s policy page.
While in many ways the new policy is a huge victory for breast cancer survivors, whether or not Facebook will continue to allow certain images to be posted on The SCAR Project’s page remains to be seen. The new policy is certainly improved, but also leaves plenty of room for Facebook to decide what images are allowed and what images are considered a violation. And, according to the new policy, The SCAR Project images previously taken down remain to be a violation. We continue to await the decision by Facebook as to whether or not they will re-post the images (including the hundreds of comments that accompany them) that were previously removed. It has now been over a month and we have yet to see those images restored to the Facebook page.
But the truth is that nothing has really changed at Facebook. In fact, the issue has nothing to do with breast cancer at all. Facebook never had any issues with mastectomies from the beginning. Mastectomies are not the problem. Nipples are. But not men’s nipples. Only women’s. Somewhere buried within the history of America’s societal evolution (or lack thereof), the female nipple became a body part to be hidden and ashamed of. The female nipple has and continues to violate every media policy in our country, but no one will admit to that fact. David Jay brought up the issue repeatedly while in discussions with Facebook, asking them to at least clarify that it was the female nipple that was in violation. Silence. No one wants to talk about it, yet everyone wants to abide by the unspoken “rule”: The female nipple is illegal in America.
And now, as we enter the world of breast cancer treatment (where we have everything from no breasts, breasts but no nipples, one breast with one nipple, breasts with reconstructed or tattooed nipples) we enter into a gray area that perpetuates the nipple conundrum. And the recent issue with Facebook’s policies has once again shined the limelight on the elephant in the room, only for the issue to be skirted around and avoided. How many more generations will continue to accept this view of the female body? With everyone’s recent finger-pointing at Facebook’s lack of clear policies regarding discriminatory, hateful, sexist, bigoted and misogynistic posts, the problem lies much deeper. And it is buried underneath decades of a misconstrued view of what a woman and her body represents.
You can read more of the press coverage at the following links:
ABCnews.com: Facebook Launches New Policy to Allow Mastectomy Photos
(Also posted on GMA/Yahoo)
ABC News Radio: Facebook Launches Policy to Allow Mastectomy Photos
NY Daily News: After backlash, Facebook says mastectomy photos are OK
Chicago Tribune: Facebook says yes to post-mastectomy photos
Huffington Post: Facebook Revises Wording of Policy on Post-MastectomyPhotos
Boston Globe: Facebook changes policy to allow post-mastectomy photos
Shape Magazine: Facebook Allows Post-Mastectomy Photos
The Inquisitr: Mastectomy Photos Allowed By New Facebook Policy