My ambiguous Relationship with Breast Cancer Awareness Month

This is a post that has been on my mind for about two years now. In fact, it is because of the controversial nature of Breast Cancer Awareness Month that I even considered starting a blog in the first place. But even now, after finally deciding that it’s time to say something, I feel hesitant and unsure on how exactly to express what I have to say. Since beginning to write this post a few days ago, the conclusion I have come to about BCA month is a 180 from where I started, expecting to tear the entire campaign to pieces.

For the past three Octobers, I have (for the most part) silently seethed in anger at the inundation of pink that takes over American shelves in the name of raising awareness for breast cancer. The first October after my mom passed away, I swear it almost drove me crazy. It seemed like everywhere I turned, people were passing out pink ribbons and well-intentioned volunteers were asking me if I knew the importance of performing monthly self-breast exams. Me, who had just lost my mom to the disease five months before. All month long, I oscillated between being on the verge of tears and wanting to punch someone in the face. The color seemed to haunt me, following me everywhere I went. At a time in my life when I wanted to forget, I was forced to confront this monster that had shattered my world on commercial America’s terms, not on my own. In the depth of my grief, other people’s intentions of slapping on a pink ribbon at a football game deemed to be Breast Cancer Awareness Weekend seemed so insincere, so naive. All I could think was, “do you really think wearing that pink ribbon was ever going to save my mom?”

But it wasn’t always like that. There was a time when I was proud to wear pink in October, to show support to my mom as she trudged along her interminable battle with the disease. It was like a badge of honor that I felt my family and I had earned after months that turned into years of watching our most beloved endure chemotherapy, radiation, surgeries, and the plethora of lovely side effects that came along with all those treatments. At seven, eight, nine years old, it was important for me to be surrounded by messages like “Bald is Beautiful” and “One step closer to a cure” because it felt like my mom was so different from everyone else’s moms and my future with my mom depended on there being a cure within reach. More than that, it signified that in all the suffering, we were part of a community that understood what we were going through as a family. Growing up, I rarely talked about my mom having cancer. I wanted to be “normal,” so very few at my school ever really knew what was going on. BCA month made me feel like my family and I were fighting something bigger than just her own diagnosis.

Once my mom passed away, though, I felt like I had lost my place in the sea of pink. My mom was no longer considered a fighter or a survivor; she had now “lost” her battle. Grasping on to the hope that by supporting BCA and wearing a pink ribbon, somehow, someday we would have a cure just wasn’t enough anymore. It hadn’t been enough to save my mom. It became insulting instead of supportive to see others wearing BCA-related products. What could they possibly know about what breast cancer is really like? Because let me tell you, there isn’t anything pink about it.

It is well-known that BCA has come under attack in recent years for becoming over-commercialized and for companies misrepresenting how they use funds generated from products that are meant to raise awareness. It’s no secret anymore that the money you spend on that beer koozie, carton of eggs, or pair of socks with the pink ribbon on them isn’t necessarily going towards breast cancer research. I could regurgitate everything that has already been said about the negative impact of the pink ribbon but so much has already been written about it and I think most of you are already aware of them. If you do want to know more about the problems surrounding the pink ribbon and BCA, I would suggest you check out this article. It traces BCA from its beginning and thoroughly analyzes how this movement to support women fighting a terrible disease has been transformed into a billion dollar marketing scheme for various companies.

But as I started researching the history of BCA and reading other blogs in preparation for this post, I realized that the issue is not as straight forward as I thought and that I myself do not really fall in one camp or the other. Yes, I despise the fact that companies are making millions of dollars off of a disease that I watched destroy my mom and I personally do not purchase any BCA products. I also think that simply wearing a pink ribbon during the month of October no longer qualifies as “raising awareness” about a disease of which most people are very aware. There are plenty of cancers and causes that receive a lot less attention and funding, and curiously, companies seem a lot less interested in doing their part to raise awareness for these causes. September, for example, is supposed to be childhood cancer awareness month and all childhood cancers receive less than four percent of federal funding, but few people are “aware” of these facts.

However, this weekend I was reminded that when it comes to dealing with the aftermath of breast cancer, everyone’s just trying to honor their loved ones in the best way they can and it’s really not up to me or anyone else to judge how someone chooses to handle their grief. My social media newsfeeds were flooded with pictures of Avon’s Walk for Breast Cancer in which many people I know participated this past weekend. All weekend long, these people shared their progress along this 39-mile walk and the bitterness towards BCA month that I was about to put down on paper started to change. These young women were walking to honor their mothers who they have watched struggle with the same disease my own mom fought, some in honor of their mother’s memory. In many ways, these women and I have walked in the same shoes; we know the fear, the pain, the anger and the agony of watching our mothers fight this disease, and some of us have both held our mothers’ hands as they took their last breaths.

Who am I to tell them that what they do in honor of their mothers and in order to keep going themselves is not “the right way?” For those of us whose lives have been changed as a result of breast cancer, we must all find a way to live with the scars that it has left on our lives and of those around us. I write; from a very young age, that was my escape, the way that I dealt with all the things I was too afraid to say out loud. I’m sure there are people out there who don’t agree with my choice to share these experiences with others or with how I express my grief, but they do not carry the same burden as I do in this life in the same way that I do; that is true of everyone’s struggle. Some have chosen to wear a pink ribbon, a reminder of who they have lost or the pain they have endured, a symbol that they are a part of a community of people dedicated to combating this disease. It is not how I express my grief or solidarity to the cause, but I can say that on this fourth October of Breast Cancer Awareness spent without my mom, I have learned to respect that others may.

That is not to say that my opinion has changed of how companies take advantage of the cause’s popularity for their own profit. It is problematic and ineffective in making progress in breast cancer research. If we could find a way to combine the disgust that some of us feel about the misleading marketing campaigns surrounding BCA and the good intentions of those trying to honor their loved ones affected by this disease, maybe we could move beyond the pink ribbon altogether. It’s time for something more, something that unites all camps dedicated to ending breast cancer without changing the reality of the disease. I don’t have the answer to what that might be but this is meant to start a dialogue that can be turned into action. But judging the way others deal with their grief in relation to this disease is no more likely to bring about change than is buying cartons of eggs with pink ribbons on them. In the past three and a half years, I’ve learned that living in anger does not change the past and only perpetuates misery, and that includes walking around every October fuming about other’s honoring their loved ones with pink ribbons. Please don’t hand me a pink ribbon but I understand if you want to wear yours.

Scan-111030-0004
Me and Mom, spring 2000

Dreams

During a recent trip to the Louvre, I saw a painting depicting the mythological story of Endymion and Diana in the French neoclassical collection. Hanging above another painting way above eye level and therefore easy to miss, its pink and blue hues, along with the drama it portrays, caught my attention. For those not familiar with the work, it depicts a man sleeping on a bed of clouds while a woman appears to be casting a spell over him as an angel looks on. The painting had no marker describing its story and although at the time I presumed it to be part of the French painter, Jacques-Louis David’s, collection, I have since been unable to find any information about this particular painting online. Further along in the gallery, however, while examining Anne-Louis Girodet’s painting called The Sleep of Endymion, which depicts a similar scene, my cousin and I began talking with a young woman who was able to explain the story behind the painting. The man, Endymion, is a shepherd who falls in love with the goddess Diana, who can only visit him in his dreams. Because the difference in their status as human and goddess makes the fulfillment of their love impossible, Endymion begs Zeus to suspend him in an eternal slumber, permitting the two lovers to meet and live out their love in their dreams. After clarifying the painting’s meaning, she pointed to the first work that had caught my eye, saying that it too represents Endymion’s story. She explained that this story is also depicted by the first painting that had first caught my eye.

Mystery painting at the Louvre.
Mystery painting at the Louvre.

Almost immediately, I felt like I understood the emotion behind this myth, like I understood why someone would sacrifice living on this earth in order to be with someone they deeply love. When I dream about my mom, it’s like being trapped in a parallel universe where we are able to meet each other and be together. I sense that we meet in my present but I never seem surprised to see her, as if I come here often and as if she has never been gone. We go about our dream-world life as if nothing has ever separated us. Sometimes, leaving this world is violent. It involves watching her die again, trying in vain to save her, and reliving the pure agony of those first moments without her. I awake from these dreams in a panic, disoriented, and astonished that my screams from my dream don’t wake anyone else. These dreams stick with me and are hard to shake; they stay on my mind for the days that follow. Other times, the separation is peaceful, as normal as the good old days of leaving for school in the morning and coming home to find her. I wake up from these dreams smiling, feeling like she’s sent me back into this world with a goodbye kiss and a hug. These encounters revive me after prolonged absences, like a wilted flower that receives the water that restores it to life. On these mornings, I feel her here with me. These dreams act as a portal that take me to her, my own trance that Zeus has cast over me, allowing me to breach the barrier between the living and the dead so that we can meet in this dream world.

Perhaps these dreams are simply the product of my overactive imagination and the fact that I have always been a vivid dreamer. Maybe it’s just a coping mechanism that allows me to escape from reality for a couple of hours. But I can’t help but think that there might be a connection between her strong presence in my dreams and a conversation between me and Mom that I hold very close to my heart, for many reasons. During the last few weeks of her life, when it became apparent that we were losing the battle, my mom spoke with me and my brother individually to tell us that she was probably going to die. Our conversation is obviously engraved in my memory and there are many things that she said to me from which I often draw strength and encouragement. At one point during the conversation, as we were lamenting over all the things that we would miss out on together, she said something to the effect of “I hope I can come down from wherever I am and watch you sleep; maybe I’ll be able to tickle your toes. That’s how you’ll know I’m there, you’ll wake up toes first.” I remember we both mustered a giggle at the thought of this despite the somber circumstance. As silly as it sounded, I held on to this image of my mom’s spirit lingering at the end of my bed simply as a way of being a little more positive about the situation and I still use it today as a comforting thought. Sometimes, on the mornings when I wake up from dreaming of her and I’m in that state in between sleep and wakefulness, I still try to wake myself up starting with my toes, letting the alertness of being awake move up my body from there until I open my eyes.

In talking to other people who have lost parents or other loved ones, I know that I am lucky to experience these encounters with Mom. An older relative of mine who lost her mom when she was young has told me that in the fifty years since, she has never once dreamed of her. No matter how hard she would try to fall asleep while thinking of her mother, she never appeared in her dreams. While it’s not always easy to wake up with your head in another world, usually a more ideal one, I can’t imagine not being able to live out these imaginary scenes with Mom at all. There have been times when she has come in my dreams right when I needed a calming presence in the midst of life’s stresses. Her first appearance occurred about five months after she had passed away. For whatever reason, I was having a particularly bad night and I cried for four hours straight. When I finally fell asleep around five in the morning, I dreamed that someone was repeatedly braiding and unbraiding my hair. All I could see in the dream was the top of my head and the hands that were working through my hair, but I knew they were Mom’s. She just kept braiding my hair, like she did when I was a kid, and then taking it apart and starting over. I never saw her face but I knew it was her, and I woke up feeling eerily calm after a horrible night. After that night, my grief seemed to change into a river that ebbs and flows instead of a storm that never lets up. Another time she visited me in my dreams every night during my final exams one semester; I woke up every morning feeling at peace from the self-doubt and pressure that exams often trigger. I never know when she’s going to visit but I hope I’ll keep meeting her in this dream world for the rest of my life.

Already watching over me, November 1992.
November 1992, 10 days old. Already watching over me.