[As The SCAR Project Exhibition is en route to Rio de Janeiro, Brazil, where it will premiere this Thursday, today’s special guest post by Aussie SCAR girl Heidi Walker, seems an apropos send-off from Sydney, where The SCAR Project just wrapped up its recent exhibit. Heidi attended the Australian premiere. It was a beautiful moment in SCAR history for the exhibit to come back to where it all began, when SCAR Photographer David Jay’s dear friend Paulina was diagnosed with breast cancer. As good friends, he had taken her picture hundreds of times, but the picture he took of her after she had her mastectomy and then showed up in yoga class in her leotard and her new reality of having only one breast, changed things. For David, for Paulina, for all the women who would than contact David to have their portraits taken…for Heidi.]
Guest Post by SCAR Girl Heidi Walker
I am a dreamer. I love to sit with my thoughts, and plan and play, and let my mind wander into nothingness. The future, I just love dreaming about the future. Don’t get me wrong I think I can live in the now and I understand the importance of that “power of now” mind control, but daydreaming is what I do best. I’m happy there. Tuesday 7th November 2006 dreaming ceased. My world stood still and everything kept spinning around me. Reality was my only mind wander. Dark, cruel, harsh, messy, day-by-day, chemo-to-chemo, reality.
I’d noticed a lump, like a pea under my right arm on my honeymoon in the April. I really didn’t think anything of it. A couple of months past until I made my 1st Doctors appointment. I mean I was only just 24, no family history, and healthy.
Cancer just doesn’t happen to this under-the-radar girl.
The doctor agreed, “Just a swollen lymph node,” she said. “Cancer feels grisly; yours doesn’t,” she said. “You’re too young,” she said. Hmmph. By October I started noticing my right arm felt strange, tingly, and the lump had increased. I also felt another lump within my breast. Lump at ten o’clock, lump at eleven o’clock; the clock was ticking on this killer boob.
Those words “your results have been remarkable” make me giggle now. I don’t know what I thought the doctor was going to announce *Cue trumpet “amazing, remarkable golden nugget found within”. Those words confused me. Huh? ”Cancer cells have been detected.” Hold on, a little clearer for the blonde in the room, so, what you are saying is I. Have. Cancer?? *Cue river of tears.
So began this rollercoaster of life with far more twists and turns than I had imagined it would. The previous month, I’d trekked 42kms with my husband and in-laws. I’d just received my wedding album. And I’d resigned one job, to start a new one that would allow me to begin my dream make-up artistry course: *dream-life. But the month in front of me, I’d be having my right breast cut from my body. I’d begin In Vitro Fertilization, in case I became infertile from the six courses of chemo I’d begin.
And I’d throw out all my low cut t-shirts *Booo, add wig shopping to the to-do list, and wonder if I will live, or die.
I was so scared for the girl who would wake up from the anaesthetic, my first anesthetic. Would she be mad at me for taking her breast? Would she forget and not know what I had done to her until she looked down and saw . . . well, nothing but a scar? It was like another person would be waking up. Would I loose myself, along with my breast? I wasn’t sure.
For a while I think I disappeared, became a shadow of myself. I had to control my mind. No future dreams or plans. It felt like a tease to dream of what I felt I wouldn’t reach. Day by day, I just got by, holding on to a glimmer of hope that that dark shadow lurking over my shoulder would dissipate and the sun would shine again.
I stumbled across The SCAR Project accidentally. I hadn’t seen the images, only a small piece from David Jay about his project online. Four years post cancer, I wanted to do something meaningful. Something that might give other young women some hope that cancer isn’t always the end. Sometimes it is.
But I knew that all I wanted when I was first diagnosed was to see other young women growing older . . . having families . . . living . . . thriving . . .
Even though that isn’t always the reality. I never imagined that as I left David’s Bondi studio, a huge wave of empowerment, freedom, and acceptance would come over me. I felt as though I was truly honest for the first time.
This is me. I’m imperfect, but I am alive. Immortalized in print, naked from the waist up.
These images I now know well, my friends, my SCAR sisters. They often stare back at me from my laptop; they give me strength and inspire me when I need it. They are raw and deep; transparent. They are take-your-breath-away-beautiful & shocking. Young women like me. Like you.
These portraits recently graced the walls of the David Jones Elizabeth Street store, Sydney, my home soil. The space was beautiful Circa 1920’s, high ceilings and a soft golden glow pours through the tall arched windows. My breath was literally taken away. I stood staring into the eyes of Darling Jolene, with a lump in my throat and my eyes tingling. So beautiful, painful and honest. I saw Paulina the first of David’s portraits, starring down the camera fiercely; I saw her standing in front of her image, her past. She looks beautiful, fit, and healthy.
My husband and I attended the opening night, and I have been back a second time with my mum and sister. To share such a meaningful part of my life, my healing process with them was a feeling I can’t describe. As they walked around with me I shared these women’s stories, past and present, they were in awe of their courage. Some woman are smiling, even laughing, others are starring into your soul, another crying. Some are living on this earth, some have moved to the next world. I have seen these images before and been touched.
I look back on 2006 with mixed emotions. I was married, *smiley face. Breast Cancer happened, *sad-angry-confused face. But I feel lucky that I’m starring down the 8 year barrel looking back to what was, having faced the struggles that come with illness, disfigurement, life hurdles, and being a young woman. I never want to meet that C witch again, but l try to take away anything positive I can from this experience—or any tough experience—to learn what I can about myself, and about others. Breast cancer, well, it just was. I feel lucky that I can say that today. I hope I can continue to say that. It just was. It changed much in my life, altered a cruisey path. I am scarred, mostly scars that run flesh deep. But I am here now, living and dreaming.
[Today’s guest blogger is no stranger to The SCAR Blog. When Facebook removed some of the SCAR images this time last year, Sara wrote an open letter to Mark Zuckerberg on her BLOG which I cross-posted here, with her permission. When quite a few of the SCAR girls were making preparations to head south for The SCAR BAMA exhibition, Sara wrote about it on her blog and once again I snagged it for reprint HERE (again, with her permission) because the SCAR sisterhood, which her article provides a lovely glimpse into, is one of the many beautiful things that has evolved from David Jay’s The SCAR Project Exhibit that many might be unaware of. When Sara got back from The SCAR BAMA exhibition, she wrote a beautiful recap on her blog, which of course also landed HERE, because she’s a generous soul like that, not to mention a dear friend. At which point I played both those cards in the latter part of the previous sentence and told her I thought with 3 SCAR blogs under her belt it was probs time for her to share her story. Of course, she did. And here it is. Thank you, Sara, love!]
by Sara Bartosiewicz-Hamilton
12/12/12…I call it my lucky day…the day my life started over. I had no idea how true this would be. Leading up to the 12th day of the 12th month of the 12th year, I was filled with anxiety, ready to have it over…at the same time, I wondered if I was sure. I kept telling myself, if ever I think I’m not ready, I’ll pull the plug…I still showed up. I started tearing up as the nurse prepped me for the surgery. She asked if I was okay.Yeah. She asked if I was sure I wanted to do this. Yeah. She said, it doesn’t make it any easier, does it? And that’s exactly what it was…I knew in my heart and my head it needed to be done…but knowing it, believing it, didn’t make it easier. Much like the beginning of this journey.
I was tested for a gene mutation in the fall of 2006. I knew I had a 50/50 chance of having the mutation…my spirit was prepared to hear I was positive. And I was. I was told I had the BRCA2 mutation and, through tears, I responded by asking the genetic counselor to set me up with what came next. She was confused. I was only 29, surely I could wait, surely I didn’t need to do anything until I was 40. Genetic testing was not new but it was not common yet either…I was the youngest person she had tested. I knew what I needed to do. I wanted to have a mastectomy. Take out the tissue that had an 85% chance of turning on me. Get it out, let me live my life. Let me give up this fear.
Fear. Our family tree of cancer explains my fear. In my mind, it was a matter of when, never a matter of if. I was surprised by some of the backlash I received from my choice to have a prophylactic mastectomy. I was naive. I was young. I didn’t realize there was a lot of fear behind that anger…sometimes, guilt. I couldn’t handle it so I shut myself away. I tried to find someone, anyone on the internet. My oncological surgeon told me she knew there were other young women choosing to have PBMs…I just couldn’t find any. I was isolated. Friends closest to me told me I shouldn’t do it if I couldn’t be happy. Happy? Was that what I was supposed to feel? I wasn’t sure what I was supposed to be happy about. This wasn’t a boob job. This was the removal of my body parts…my tissue ripped out of my body. And replaced…a plastic mound shoved under my muscle. A plastic mound that would grow over time as I was injected with more fluid, that would continue shoving my muscle around. And all of this to evade cancer…that may eventually come for me anyways.
A girl found me on MySpace. She was the one who told me about the SCAR Project and she asked if I wanted to meet her and a couple other girls in NYC to be photographed. I looked up the website and was speechless. I was looking at young women…I was looking at me. I immediately reached out to David Jay:
David~ I would like to be involved…I have never had breast cancer but have the BRCA2 gene (mutation). I had a prophylactic mastectomy at 29 because the gene (mutation) gave me an 85% chance of getting breast cancer. I understand your project is for women who have fought breast cancer but I thought I would volunteer in case you could use me as well. Regardless, I look forward to seeing the finished project. When I was getting ready for my surgery, I was desperately searching for what I would look like afterwords. I couldn’t find pictures of young women…this is powerful. Thank you.”
I was so excited (and terrified at the same time) when David wrote back and asked me to come. I wanted to participate because I wanted there to be a photo. I wanted the next 29 year old to be able to find my photo and be able to find the courage to have a PBM…to know she was going to be okay. I was terrified because I was going to be photographed. Because there would be a photo of me…there was going to be a photograph of my scars. There was going to be a photograph documenting myimperfection…
It didn’t help when I received an email that it may be best to wait. When I asked why, I was told he was receiving emails and he wasn’t sure what to think. I was devastated. And then I was enraged. I received a copy of the email because my sister went to bat for me and was sent a copy of the email:
Please re consider the shooting of Sara… She is Not appropriate for this project. she NEVER Had cancer. She only took off her breasts as prevention!!! Everyone in her friend circle and family knows that she is not stable to do this!!!! She does things like this for attention. Who??? Has a DOUBLE MASTECTOMY at age 30 when NO cancer is present??? Someone who is not STABLE. Her mother has NEVER had cancer. Her GRANDMOTHER has NEVER had cancer. This is not the same as your other candidates. PLEASE DO NOT encourage her behavior… Now. I say this with love but as you can understand MANY of us are tired of her charades. And having her half naked in a magazine for us all to explain to people who are AWARE that she NEVER had cancer in the first place. It makes a mockery of those women who have actually almost lost their lives.”
It was obvious to me this was not someone closest to me – my grandma did, in fact, have cancer, she had died of cancer. On the flip side, to be honest, I think it hurt so much because I wondered myself. Am I the only one who goes through a double mastectomy at 29 (ahem, NOT 30) without there being cancer present? As I tried to explain the untruth throughout the email, I expressed that I had been wrestling with guilt. Guilt that my choice was done out of fear…guilt that I was a sissy because I was too afraid to get cancer.
When I finally made it out to NYC, I had a lot on my mind. I had also received emails from this same person spewing ugly things. At that time in my life, I was unable to recognize that sometimes people are ugly because of what is inside of them…and it has nothing to do with me. I was unable to detach from their words, unable not to internalize them. While it didn’t stop me from going, it made me pause. Was I doing the right thing? I was the last girl to be shot that day. I arrived after everyone was done being photographed (read: dressed). I sat down and had my make-up and hair done and then it was time. The point at which I was taking off my shirt, it seemed like a really crazy idea. Other than my doctors, my hubby was the only one who had seen the scars and he saw them with the security of a dark room and, even then, I did what I could to hide them. I was asked beforehand to bring something that had meaning or relevance to my shoot. I brought a charm with a picture of my littles on it and I also brought a photo of my mom and two of her sisters. I had something which explained without words the reason for my prophylactic bilateral mastectomy and I had something to explain why I would choose this. David went with the photo of my mom and two of her sisters. I’m so thankful he did – for all of time, my photo explains the family ties and the multiple generations our mutation has affected.
Something happened at my photo shoot. Something I was not even aware of yet. I found a place where I belonged. A place of acceptance. A place of understanding. A place of love. I am forever thankful for my first SCAR sisters. They helped me embrace that my story was valid…they helped me see I was accepted into their “club” without having cancer. They helped pull me back on my feet when I didn’t even realize I was floundering. And they helped me grow taller that day. They were impressed by my courage and strength. I didn’t believe them quite yet but I held onto them, hoping they were right.
Fast forward a few years. It seemed surreal as I sat across from someone I called my best friend and heard similar words of ugliness being flung at me. Ironically, it was my five year “boobiversary” – five years after my mastectomy and I was being assaulted with words. Self-mutilator. In need of a therapist, not a surgeon. I had just disclosed I was planning on removing my implants. It was something I had been quietly considering for a while. I had not talked about it with many people: hubby, my plastic surgeon and with one of my SCAR sisters at the Cincinnati exhibit. I was having daily discomfort and pain and was hopeful that having my implants extracted would help relieve this. I was at the point of being ready to schedule the surgery and wanted the moral support of my friend…my “best” friend. I was caught off guard. The me who showed up for my PBM would have allowed this assault to continue until completion…the me who spent the past couple years embracing my new reality was strong enough to say stop…strong enough to walk away. Unfortunately, not before internalizing some of the accusations. I delayed my extraction for another year. I lived with the discomfort and pain as I searched my soul. I couldn’t deny what I was feeling but was I sure having my implants removed was the right choice?
I was back in Cincinnati when I had the courage to say it was time. I came home and the first conversation hubby and I had was that I wanted to schedule the extraction. It seemed like more than coincidence, perhaps a sign from the universe, when I was opening the mail immediately after our conversation and I opened lab results from my doctor confirming an autoimmune disease. When I had my pre-surgery appointment with my plastic surgeon, it was both amusing and sad to hear my plastic surgeon ask me what had taken so long. He told me he could tell this was the right choice for me…over a year before.
Fast forward to 12/12/12. My life truly did start over. When I woke up from surgery, the discomfort was gone. As my body healed, so did my spirit. I noticed I started looking at myself in the mirror without the little black box to censor what I was seeing. I realized I was the most comfortable I had been in my own body since my mastectomy. I found myself forgetting about the extraction and am no longer reminded daily of my surgeries, my BRCA mutation, or my lingering fear cancer will find me. Life started over, no longer hindered by the past.
I have been incredibly blessed – I always had someone in my corner. And, as my journey progressed, that corner became fuller and fuller. I choose to include the pain and judgment of the past because it is, unfortunately, what many women in my shoes continue to hear. However, while those hurtful words have no power over me, they give me the ability to reach out to someone else and say, I understand. I heard that too. I am hopeful that sharing will also help those who would place judgment to step back and recognize, it’s okay if you would never make the choices I made but it doesn’t give you the right to try to say you could live my life better than me. When I look back, I remember vividly the isolation I felt before my prophylactic mastectomy and again, feeling in the extreme minority as I was considering my extraction. I don’t ever want any woman to be completely alone. I recently started a Facebook group with my fellow SCAR sister Barbie – it’s called Flat & Fabulous. We are actively on the hunt for our fellow sisters who have had a mastectomy and, for one reason or another, do not have reconstruction. It has been both validating and heart breaking as I get emails from a stranger telling me she never knew there was someone else like her. Our page offers support, encouragement, and LOTS of laugh as we all go forward with living our new reality.
I recently wrote about The SCAR Project Exhibition in Birmingham and Joules texted me to ask if I would share my article here on The SCAR Project blog. About five minutes after she told me it was up and asked me to proof it, I received another text that said now that I’d written for the blog THREE times, but had yet to share my own SCAR story… “it’s time.”
So, this is my story. It spans over my lifetime. It starts at my mastectomy. And again at my extraction. I am incredibly thankful for the lessons I’ve learned along the way about love, friendships, life, and what is truly important. Trying my best to Live Sincerely.every.single.day.