Today I am living with cancer. Of all the labels I wear in the many dimensions to my personal identity, being a person living with cancer is one that I never dreamed I would wear. It is one that I am struggling to accept, struggling to find a way to claim and wear as one might slide into a new coat. I realize also that there are labels I wear that took a while to fit, a while before I could take them out of the closet and put them on with any sense of normalcy. For example, as proud as I am to be Black and to be woman, there have been days when I just needed a break from waking up and putting on a skin color and a gender identity, a break from all of the ambiguities and complexities of those two labels and the accompanying challenges that have been in place since the day of my birth. I am proud and happy to be the spouse of a wonderful, powerful, beautiful, and gifted woman. But there are days when “spouse” is a hard label to wear; days when marriage is a difficult composite of past and present vague occurrences that made sense yesterday and will make more sense tomorrow but are mysteries on that particular day.
I have enjoyed the wonder of being a social justice and HIV/AIDS activist for the past three or four decades, but there are days when I just have not wanted to stand for social justice issues like non-violence and free speech, days when I just wanted to tell the conservative right to get over themselves, days when I just wanted everyone to be like me and my friends, to be like everyone who thinks the right way. There have been days when I imagine it would be refreshing to be a bigot for just a little while because those were days when bigots seemed to be the only people having a good time.
Living with this cancer thing, however, has been a different experience for me. It challenges me to look at the world with as much truth as I can capture and accept more truth than I can understand at any given moment. Living with such a stigmatizing and unpopular disease (as if any illness can ever be popular, duh!!) forces me to look at truth through the eyes of people who live it, not through the cloudy, biased, and self-absorbed lenses that appear when I want the world to be comfortable. Living with cancer forces me to own all of the other labels and wear them in a different way even when it is hard to put them on, even when I am tired or angry or disappointed or discouraged or just plain weary from lifting up those signs to alert other people to my race or gender identity or political beliefs. Living with cancer takes me to a place of knowledge that braces and reinforces my arms as I struggle to hold up the banner of “human”.
Another label I wear is "anthropologist". As an anthropologist I have learned that culture is at once messy and difficult and changing and hard and conflicting and yet still the incredibly wonderful characteristic of the human condition. Being an anthropologist enables me to know without a doubt that survival is a basic human cultural axiom. Anthropology is about meaning and about truth-telling when we find that meaning. It is this component of the science that makes it both appealing and uncomfortable. Anthropology is not about keeping secrets. Rather, it is the job of the anthropologist to find the secrets, discern their meanings and broadcast that knowledge to the world. The Anthropologist’s mantra is “What does that mean?” I have had many difficult discussions with my spouse because I can never let that trait go. No matter what happens in our lives, my typical retort is “What does that mean?” You’re angry, what does that mean? You’re sad. What does that mean? You’re disappointed. What does that mean? Now I search for meaning for my own self. I have cancer. What does that mean? Perhaps, life is now about learning what that means.
When my mother would punish me or not give in to my every desire when I was a child, I could not wait until my dad got home to tell on her. I would meet him at the door and deliver a detailed treatise about how mean she was to me that day. It never worked, and after a while she would just tell me “Now run and tell that!” as if to say, “I will do what needs to be done even if it makes you unhappy or uncomfortable because it is the right thing to do.” My mother knew that she could not be bullied into doing what was not good for me because I might tell something about her that might make her seem harsh or unpopular.
Living with cancer is much the same experience. The anthropologist in me has learned how to look into culture and describe the human condition in rich ways that communicate deep and abiding meaning and indisputable truths; ways that prove and support the commonness – not the differences – of the human race. Like my mother, being a person living with cancer means I will not be bullied into backing away from meaning and truth, bullied into being silent and invisible. If we are to disarm cancer, we must all understand that omitting critical facts about the stigmatizing nature of this disease is just a different kind of lie, not an analytical omission. The most critical truth about cancer is that no one deserves to live with it , that everyone living with this disease deserves to survive and thrive in spite of it.
Many of us grew up in a culture that legislated keeping secrets under the guise of don’t-ask-don’t-tell. During the past few decades we saw a nation realize that the meanings of our secrets were in fact destroying individuals and distorting institutions like family and marriage, and homeland security. We are now at a point where we must come to understand the power of truth and know through sometimes painful analyses that secret cultures are dead cultures. We are at a point in life where survival demands that we run and tell the truths of health as a human right and celebrate cultural beauty and human possibilities. Our challenge is to run and tell that there is no such thing as deserved illness. We all are reflections of the great and mighty act of creation that is the human condition. We must run and tell that because we are all part of the human race we are all worthy of love and compassionate justice. We must run and tell that there is no such thing as a bad or ugly or worthless person living with any disease. All cultures, all persons, are great and mighty and beautiful and exotic and just plain delightful. We must run and tell that all resources are human resources and no person should live without care for any kind of illness. Run and tell that all of us reach for peace, not chaos; all of us celebrate relationships that produce life and bring joy; all of us yearn to rest in the fullness of lives lived long.
More than anything, we are called to run and tell that we all have knowledge and truth and that our truth and our knowledge fill us with power no one can ever take. Today is the day for persons living with whatever disease to claim greatness! Because we are great and powerful and knowledgeable we can make the world a safer place, a more compassionate place, a fun place. Because we are smart and powerful people living with a dumb and weak disease we know how illness and challenge can mean opportunities to appreciate the beauty of life and its possibilities. I sincerely believe that together we can demonstrate the splendor that radiates through our very pores when we stand for truth and justice and the American way from a posture of peace and power and knowledge and love and health for all people just because we all deserve to be loved. I present a challenge to all of us today, especially those of us living with diseases, to disarm disease by living our greatness with power, truth, kindness, and passion. Celebrate the journey with me; welcome the challenge. Now run with me and tell that!
It occurred to me that cancer is quite stigmatizing! I was at once surprised and disappointed to find myself NOT wanting people to know that I am living with such a dreaded disease. I thought back to the moment my spouse, Patricia, told me the doctors had found a cancerous tumor on my bile duct. My initial response was "I am so sorry!" I mourned for the journey that had been thrust upon her, knowing that is a few hours her life had been forever changed. I felt sorrow also for her having to tell others that the woman she loves and has chosen to share her life with was walking around with some kind of thing growing and chasing her toward death. There I was, laying in a hospital bed, in pain and discomfort from an invasive procedure that had lasted several hours and my first reaction was guilt! What was THAT about!!!??? It made no sense to me, but was nevertheless real.
Since being diagnosed, I have frequently remembered hearing about cancer as a child. I recalled hearing my mother and her friends talking about others who had been diagnosed with cancer. As they talked their voices lowered to whispers and their faces seemed to melt into pools of sorrow. In my mind, during those days, cancer was absolutely the worse thing that could happen to someone. It was worse than diabetes or heart disease or even getting killed in an airplane crash. Nothing was bigger than cancer back then and everyone lived in fear of getting "IT". Oddly, nothing still seems bigger than cancer for many of us still today. When I consider my initial reaction to being told I was living with this thing, for some reason I immediately went back in time, back to that place where this illness represented brokenness. And, in that moment, in that place, I was ashamed of my brokenness. For me, this is unacceptable. For me, now is the time for us to disarm disease by drowning cancer and other stigmatizing illnesses in truth! The truth about cancer is that is is simply one of many illnesses some people encounter. It is not the result of anything someone did or did not do. There are, of course, behaviors that increase the possibilities of some individuals getting cancer, like smoking or being exposed to any number of cancer-causing substances, but there are also individuals with this disease who never engaged in those behaviors or were never exposed to those substances. Sometimes stuff just happens and guilt and shame must never be considered characteristics of any illness.
We have an opportunity to disarm disease by deciding to celebrate the lives of persons with stigmatizing illnesses such as cancer and HIV/AIDS. The challenge before us is whether we have the courage to accept this opportunity. Perhaps meeting this challenge requires that we encourage persons living with such diseases to "run and tell that", to openly share the truth of their health and enlist the support of others. Meeting this challenge also requires that those of us living with diseases take the time to learn everything we can about our illnesses and work to educate others about the possibilities for life rather than death.
Tomorrow I will present my body to be cut open so that a tumor that has invaded it can be removed. I look forward to a positive recovery process that will blossom into an aggressive and widespread effort to disarm disease. My prayer is that others will join me and work to change shame into pride for the may others who, like me, felt - if only for a moment - that they deserved misfortune of any kind. The greatest truth for me today is that all of us deserve to be healthy and to live filled with peace, pride, and passion for the unfolding of our tomorrows with all the mystery they hold!
Renee McCoy is a writer, anthropologist, preacher, and artist living in Seattle, Washington. Her life has been focused on bringing the good news of God's unconditional love to others and working to support and encourage others to celebrate the wonder of being created in God's image. At the core of her soul is the unwavering belief that we are all remarkable individuals who come together to support one another as we journey to wholeness and the fulfillment of our unique purposes in this life.