Monday, March 19, 2012

Arguing with Audre: On My Impending Mastectomy and Reconstruction


As a strident feminist of color, of course, I would read Audre Lorde's The Cancer Journals now that I myself was diagnosed with breast cancer. In addition to reading practical books with strategies for beating the illness, I also wanted food for the soul that would enable me as a spiritual being and political animal to draw meaning from the experience. What better to read than the memoirs of radical cultural activists such as Fred Ho and Audre Lorde?



I had long been an admirer of Mother Lorde's work, but I had never had the courage to read the work she produced during her battle with first breast and then later liver cancer. That's how much fear the mere word instilled in me. I was oblivious to just how prevalent this illness is even when my best friend was diagnosed with and survived ovarian cancer in 2003 and my own grandmother succumbed to colon cancer in 2005.



Fear is hereditary it seems. My own mother is a 12-year breast cancer survivor and did not even know she had it. Neither did my father. I remember back in 1993 when they found a lump in her right breast. My only image is of my mother crying quietly as they wheeled her into surgery. Having never been in the hospital her entire life except to birth her three children, Ma was frightened. I remember several hours later the doctor telling us, “It was nothing.”



Once the shock of my own diagnosis had passed and I entered warrior mode, my mother and I shared scars. I showed her the fine needle marks of the two spots where my left breast had been biopsied, and she showed me where she received radiation. “Radiation?” My reaction surprised her. She reminded me of the time that I accompanied her and my father to the hospital for her daily radiation treatment. But they don’t give radiation to people who don’t have cancer, do they? After all, radiation can cause cancer.



She told me she still had her records, and I asked her to find them. Sure enough, in 2000 my mother had been diagnosed with ductal carcinoma in situ, underwent a lumpectomy and had twenty rounds of radiation. It never registered to either of my parents that she was being treated for breast cancer. They just did as the doctors told them and then moved on with their lives.



This discovery left me with a variety of thoughts and emotions. First was the angry thought. What the fuck kind of medical care do we have in this country that a 69-year old woman can be treated for breast cancer and never know it? Then I imagined all the times I sat in waiting rooms over the years, completing family histories across a wooden clipboard with a chained pen and checking No in the box next to cancer. Had I known that my mother had breast cancer, I certainly would have been more vigilant in minding the health of my breasts. I finally settled on the positive. Given her personality, it’s probably best that Ma did not know she had breast cancer, and all that matters now is that she blazed the survivor trail, and I could follow in her footsteps.



Of course, being my own woman, I have to pack different tools for my journey to survivorship. My mother, for example, would rather I not read so much. I had been reading Straight from the Hope: Letters of Hope and Inspiration from Survivors of Breast Cancer and that, coupled with the counseling I had been undergoing (which I began several months before I was diagnosed), helped spurred a healing crisis. As much as the letters delivered on the promise of hope and inspiration, they also triggered long-denied and deeply suppressed loneliness over my challenge in finding a life partner. So many of the women wrote about the men who loved them and stood by them as they faced breast cancer despite all the prices it exacts, from the lost of breasts to the threat of death. I call this a healing crisis because this despair needed to be excavated, felt and cleared if I was going to not only defeat cancer but truly become holistically well. Perhaps it’s because it is difficult for them to watch me sob over things that seem unrelated to my immediate circumstances, but my parents wish I would just focus on getting well. My father in particular understands why a cancer diagnosis would compel me to evaluate my life, but if he had his way, I’d cut it all this painful introspection. I have to remind my parents that my tears are a sign that I am getting well because I am going to the root of my dis-ease.



And I do moderate my cancer-related reading. I read enough to satisfy whatever desire I have in the moment for information or inspiration, and just when I brush against the edge of overwhelm, I stop. This is not typical for me who loves to read and can research incessantly once I become taken with a subject. I recognize that each person who embarks on the cancer journey must do whatever she feels is right for her, and I respect my own choices. Some people like my mother want to entrust themselves to their doctors and, to the best of their ability, focus on other aspects of their lives. Others choose to make confronting the illness their full-time job.



Knowing myself fairly well, I knew from the start that the best thing for me fell somewhere between the two extremes. The kind of person that I am, I cannot beat cancer by becoming a full-time patient. For someone like me, that’s giving the disease too much power. (That is the same reason why, when I begin chemotherapy, I will cut and donate my hair, shave my head and use it as an excuse to stock up on the hats, scarves and earrings I love so much.) By the same token, I cannot wait for my doctors to treat me but rather proactively take actions – change my diet, return to my meditation practice, become a client of You Can Thrive where I receive complementary treatments such as Reiki and acupuncture etc. – to heal myself. (It also means excising things from life – habits, beliefs and people – that do not serve me.) I continue to finish working toward my MFA in writing and producing for television, pursue my interest in burlesque with Pink Light Burlesque, and otherwise live my life – the life I find worth fighting for – on my terms.



Perhaps this is why I find myself becoming angry with Mother Lorde when I read the following passage in her cancer journals:



I would lie if I did not also speak of loss. Any amputation is a physical and psychic reality that must be integrated in a new sense of self. The absence of my breast is a recurrent sadness, but certainly not one that dominates my life. I miss it, sometimes piercingly. When other one-breasted women hide behind the mask of prosthesis or the dangerous fantasy of reconstruction, I find little support in the broader female environment for my rejection of what I feel is cosmetic sham. But I believe that socially sanctioned prosthesis is merely another way of keeping women with breast cancer silent and separate from each other. For instance, what would happen if an army of one-breasted women descended on Congress and demanded that the use of carcinogenic fat-stored hormones in beef-feed be outlawed?



I don’t know if this is a quirk all my own, but it’s not easy for me to fight with an ideological titan such as Audre Lorde even in my head, but fight with her I did. It’s not lost on me that she lost her breast at a time when breast cancer treatment was far more limited and reconstruction was only available to the economically privileged. (It is now federal law that for women whose health insurance covers mastectomies, the company must also cover reconstruction. This right includes women covered by Medicaid. In fact, I am insured under a special Medicaid program created specifically for people diagnosed with certain cancers.) I recognize that there is much greater awareness and less stigma of breast cancer in the twenty-two years since she first wrote that passage. I have no doubt that if Mother Lorde were alive today she would have radical critique of pink ribbon culture as well as a thorough analysis of the discrepancies in the prevention and treatment of women of color, queer women and poor and working-class women, and that she would experience and acknowledge a wider acceptance of her desire not to hide her mastectomy if she stuck with that decision.



Still I was angry at Audre. I stewed over that passage and wrote furiously in my journal. I understood and respected her point on an intellectual level. She meant that being able to undergo reconstruction can allow someone to become politically complacent about the institutionalized oppression that perpetuates breast cancer. When Audre wrote about what might happen if an army of single-breasted women descended on the capitol demanding change, I saw it. The image compelled me as an activist and an artist. If I did not have the option of reconstruction, I would step without hesitation into that vision and be part of it.



But as a socially conscious woman, I would be a part of such an action whether or not I underwent reconstruction, and I would like to think that I and my saline implants would not have my integrity questioned. I haven’t finished The Cancer Journals, and so perhaps she undergoes a shift of which I’m not yet aware, but thus far Audre talks about reconstruction without considering the blessings she had that made it easier to forgo one. She had a partner. She had children. She had recognition for the work she did. For what of someone like me who is young, single and hopeful that such love and appreciation is still possible for me, especially if I can transform myself through my journey back to wellness?



The ironic thing about my anger at Mother Lorde is that my own mother wants me to conserve my breast. She would rather I have chemotherapy before surgery in an effort to shrink the tumor with the hope that a lumpectomy will suffice. My breast surgeon would comply with my wishes if this was something I chose to do, but I am following my instinct which is to heed his recommendation: give up my breast. While I don't fool myself that I will sail through this without great emotional pain, I am at peace with my choice. Truth be told, reconstruction makes it much easier even though the method I have chosen means that I will not wake up from surgery with an already reconstructed breast to ease the pain of the natural one I lost.



The fantasy Mother Lorde dismisses is about having a certain quality of life and making a decision to not acquiesce everything the disease attempts to demand. I wrote in my journal:



Must I take on every battle? Is this one not enough? Can I sit out the body image struggle, too? The truth is I can’t. Not for a minute. No amount of reconstruction – no matter how aesthetically pleasing to the Western standard of beauty it may be to the immediate eye – is going to make me forget that my God-given breast is gone, a casualty to this disease.

How does the fantasy of reconstruction favor me, if I am lucky enough to meet a man with whom I want to be intimate with in all ways, when I have to reveal and explain to him all the complexities – physical, emotional, spiritual -- of being a breast cancer survivor? There is nothing about replacing my natural breast with an implant that is going to permit me to lie to myself ever about what I am going through right now. On the contrary, it will be a constant reminder. While my feelings, thoughts and beliefs towards the experience may change and even improve over time, I will never be done with it. I can never forget.

How is that a fantasy when there’s no escape but only reminders?



And as I process my anger at Mother Lorde, I find myself wishing that she was alive so I can argue with her. The existence of my anger reminds me that I am very much alive and well, and had she herself survived cancer, Audre probably would have welcomed a loving yet vigorous debate with a younger feminist of color and fellow cancer warrioress. She remains an inspiration to me, and I embrace her challenge to remain politically vigilant in the ongoing war against cancer. I first must win the personal battle, however, and that means making the unapologetic choices that enable me to keep faith that more joy awaits me no matter what challenges oppression might dish.



7 comments:

Jomo said...

Sofia,

You have invoked the name of a powerful spirit. No doubt, Audre Lorde is sharpening her pencils and putting on her shoes to argue and walk with you through this healing crisis. Warrioresses take care of their own!

Much Love!

Elisha Miranda said...

Sofia,

I read your response to Audre who has been such a warrioress for so many of us. By challenging her, you do right by the ferociousness of her spirit. You invoke her memory and then provide a more contemporary spin on her analysis of that time period. It's important those of us in our generation read the her story the that has passed, and then use it to build. You're an architect my sister in so many ways. And you continue that survivor spirit that Audre Lorde invoked in so many. Just when I thought I couldn't love you, my sister any more...well you get up and surprise me. Peace and Love.

CT said...

You have a courage that leaves me speechless in a search to describe it! I can only imagine that your journey of survival becomes such that no reconstructed breast can erase it. I support you and send you much light as you continue on in your conversation with Mama Lorde!

Love you!
Candy

Tania said...

Hi Sofia,
I'm so moved by your strength and clarity. You have the eloquence and depth of thought to process your emotions and deliver them in a truly touching way. I'm sorry that you have to go through this although I am happy that you have the support of your parents, friends and the therapuetic release of writing about your experience in your blog. If you would like reiki treatments I would be honored to give you one. Sincerely... your neighbor from Fteley... Tania.

Anonymous said...

Thanks for sharing your spirit and path with us, Sofia. What really resonated with me from your post is the addressing of dis-ease and pushing ahead through the disappointment and grief that has come up for you. The holistic healing that you are proceeding through is inspirational and enlightening... Like Audre, you are a beacon of fierce power, love and both forms of light that are Resistance and Yielding/Letting Go.

Axé, Amor y Fé! Vero

© Marinieves Alba, 2011 said...

This piece is a fitting tribute to survival and an elder sister-survivor. Sending you healing light and and prayers for peace and strength. Paz, marinieves

Unknown said...

You are so beautiful and inspiring. This is so moving and speaks to so many women. Thank you.