It has been over four months since I have written in this blog. So much has happened in that seemingly brief period. In May I underwent a serious surgery to remove a cancerous tumor. This operation removed part of my pancreas, stomach, and intestines, and all of my gall bladder. As much as I miss my little bits, I am happy to say that all of the cancer was removed and recent tests found no other cancers. What a joy and what a relief! I began chemotherapy a few weeks ago to address any little microscopic cancer cells that may be hiding out. My experiences with chemo are an entire other story and at some point in this blog I will share. For now, I just want to report that I am surviving pancreatic cancer and stand anchored in a place of deep gratitude and praise to God. I need, however, to also share the wonder of love that helped me reach this place and stand solidly rooted in a position of love and comfort, knowing that God is active and powerful and faithful. They say every test is an opportunity for a testimony. This health challenge has been an invaluable opportunity to journey deeper into my relationship with God and the power of love that upholds creation today.
When this whole cancer thing began, I was at once numb and terrified. In fact, I am still sometimes not sure what to feel from one day, one hour or one moment to the next. All I really know is that something happened to make my life take a radical turn onto a road I never dreamed would be part of my journey. With my head spinning and my soul melting, I did the only thing I knew to do. I reached out to friends and family and asked for their help in the form of positive energy, prayers, and presence whenever possible. It is to all of you – family and friends both close and distant – that today I extend my deepest and most heartfelt gratitude. Thanks you for loving me through this time in my life. With humility I say to each of you that I honestly don’t know what I would have done without you.
My greatest and most profound lesson and the core of my testimony today comes from the realization of how very big God is and of how love crosses all boundaries to manifest God’s presence and action in our lives and in our world. From the beginning of this saga in my life people have prayed for me. I’m not talking about your run-of-the-mill group of friends who get together for spiritual intercession when tragedy strikes. I’m talking about a diverse group of individuals who heard that I was facing a daunting challenge and stepped up and out to petition God in whatever manifestation they envisioned, asking that Being, that Presence to reach out and extend healing to my life. I call that prayer. Muslims and Buddhists and Christians and Jews and Hindus all prayed for me. People who believe God is female and people who believe the God is found in the sun or the moon or is represented in rats and snakes all prayed for me. Homophobic people who believe my sexuality is an abomination prayed for me because they realized love transcends whatever narrow teachings about sin and sexuality they had been taught. Baptists and Pentecostals and recovering and practicing Roman Catholics and Lutherans and Apostolic and Sanctified and New Age and Alternative folks all prayed for me. I even received a note from a friend telling me she was raised by atheists and still identifies as one telling me that she hoped there was a God so I could be healed. Now that’s some kind of love!! And there were more who prayed whom had no formal affiliation to any religious dogma but were deeply connected to a powerful spirituality grounded in love and respect for human life. Some prayers were momentary thoughts or simple one liners spoken from time to time whenever I crossed their minds. Heal her. Keep her safe. Protect her. Touch the doctors and people who work to keep her alive. Give her the strength to deal. Others were the complex and compound musings of those whose prayers continuously resound throughout the universe, petitioning God in any and all situations. Regardless of how or when or to Whom, all of those prayers found their way to one another and formed a mighty cloud of protection and healing around my life and for this I am so very grateful. Through it all I came to understand in a new way that God is bigger than the small categories we construct to contain and control how love shows up in the world. I am so humbled by it all.
This blog began as a way to communicate life’s experiences as a living testimony to the wonder of God in my life in the past, present, and future. It is my intention to return to these pages as frequently as my health and strength allow so that I can give voice to the beauty of life as it flutters around me. I have learned so much these past few months; my hope is that others will be encouraged to celebrate their lives as I share my experiences. For right now, however, I just want to once again say thank you to all of the many people who prayed for me however you prayed. Know that God continues to be faithful and your prayers were answered. I am back and getting better and stronger and more hopeful each day. Thanks you all so very much!
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!
For the past three decades, I have lived with a disease called Achalasia. Basically, this is a rare disorder that causes the muscles at the base of the esophagus to become spastic, resulting in difficulties getting food to pass through to my stomach. About 28 years ago I had surgery to address this problem and, as my increased girth over time has demonstrated, eating became less of a problem. As long as I remained calm and focused, I was able to eat whatever I wanted. The problem, however, is that Achalasia is a progressive disease and over time the operation grew less effective. About a year ago I began to have difficulties eating once again. I lost a bunch of weight, but I also began to look as cute as a newborn puppy.
A couple of months ago, my body began to itch. I'm not talking about that mosquito-bite or heat rash kind of itch. I'm talking about claw-at-your-skin-can't-sleep-at-night kind of itching. It felt like snakes were crawling beneath my skin and nothing I did brought relief. After trying everything I knew to do, I finally went to the doctor. It turned out that my liver enzymes had become extremely elevated and the itching was caused by excessive bile not being processed in the liver. Who knew the liver worked that way? I certainly didn't! So for the next 21 days I engaged in a series of tests to identify and remove the cause of my discomfort. Finally, it was determined that a gall stone had broken loose from a pile of others collecting in my gall bladder and was blocking my bile duct. What a relief to know the cause of that 21-day itch! The plan was to have a simple procedure to remove the stone and vacuum out all the bile that had accumulated due to the blockage. This would soon be followed by another simply operation to remove the gall bladder and its accumulation of stones. Easy-peezy! .
On march 31 I appeared at Seattle's Swedish Hospital expecting to be vacuumed out and on track for clear eyes and itch-free living. I had really begun to look pretty rough at that point! My eyes were the color of a yellow highlighter and even with the medication the doctor prescribed to stop the itching I was scratching like a junkie who just discovered the best damn heroin on the planet!! To make matters worse, I learned that scratching, like yawning, was contagious. When you scratch people around you start to scratch as well. After a few minutes with me the whole room was scratching like a hoard of fleas had just been released!! I wanted, needed, expected relief when I went to the hospital that morning.
As sometimes happens in our lives, the universe shifts beyond our control in what feels like the blink of an eye. As I struggled to regain consciousness in the recovery room, I was informed that I would not be going home that day and was being transferred to another room. When I got settled in my new bed, my spouse came in and told me a cancerous tumor had been discovered on my bile duct during the procedure. There was going to be some organ cutting, chemotherapy, and radiation in my future. Things suddenly grew bigger than itchy skin and yellow eyes. Life got very real and precious all of a sudden and for the first time in my life I could not feel the ground beneath my soul. Nothing in any of my lives before or then had prepared me to connect the word "cancer" with any part of my self as I had imagined that self emerging.
Needless to say, the days since have been an adventure into emotions and processes for which I was not prepared. I went from wondering what to expect as I stepped into that pivotal age of 65 to wondering what mysteries waited around the upcoming corners of my life. At the same time, I can only give God thanks and praise for that 21-day itch and for the many challenges that have danced across my path this past year. Here's how good God has been: the esophageal thing made me lose weight, which improved the overall state of my health; the renegade gall stone blocked the bile duct and led to the discovery of the tumor, which is very small at this point; the chapters of entire event together made me realize how many friends I have around the country and brought to the surface how much I love my family, my spouse, and my friends. Through it all, I came to understand the love of God in new and exciting ways. For all of this I am deeply grateful.
God continues to be in charge of the things around us and constantly fills our lives with surprising tidbits of a reality that at once confounds and comforts us. After 65 years of life, I have finally learned to stop asking God for explanations and, rather, receive the blessings revealed in each and every experience with grace and humility. So often we search the crevasses of our past for reasons why bad things happen to good people. We assume the challenges and discomforts we encounter are the result of something we have or have not done, consequences of how or whom we are. We search for someone or something to blame. Well, if I have learned nothing else in all these years, I have learned that God simply does not work like that. Life happens to all of us and through it all God stands in the center cheering us on. Through it all, God is faithful. I am comforted to know that through it all I am ready and able to walk THROUGH whatever valleys I encounter; I am excited to feast at the table God is preparing in the presence of negativity and challenges, knowing without a doubt that surely goodness and mercy are following me like a loyal and devoted puppy! I am scheduled for an operation on May 3rd to remove that tumor. Recovery will continue for quite some time due to the complicated process of the surgery and treatment for the cancer. This is a journey and an adventure into a new dimension of living. Join me in praying that I have the grace and humility to receive God's healing love and peace. Stay tuned, stay hopeful, stay in faith, and stay with me!! I have always found strength in the beauty and wonder of others, so let me know how your lives are doing as well!
On April 4th I celebrated my 65th birthday. All my life, 65 represented a major milestone in living. The 65th birthday always meant transition into one's final chapter. You work all your adult life looking forward to retiring at 65. Job well-done. Rest is your reward. As I approached this birthday, I considered what to do to share this next leg of my journey with others. As an anthropologist, I naturally wanted to chronicle such a pivotal year and decided to start this blog. As a person of faith, I wanted to include a dimension of spirituality. As a Black Lesbian, it is also significant to write about this particular component of my life as it has emerged and continues to emerge.
As I considered all these things, the question of where to begin loomed large. What would make this "thing" I am so compelled to write interesting enough to engage others in connecting and joining me on this journey? How can sharing this journey serve to encourage and strengthen others? How can my journey help spread hope and encouragement in a world that seems to be sorely threatened by despair and hopelessness? At 65, I am more convinced than ever that life is meant to be full and rich and replete with joy and the confidence that God created all of us to be powerful and whole and healthy. At 65, I am more convinced than ever that God delights in who we are and is excited about the remarkable persons we become each day!
Four days before my birthday I was diagnosed with cancer of the bile duct and things became interesting for me real fast. Suddenly I find myself on a path I had not expected. So, as I take this journey @65, hang out with me and join me on a very real adventure. There are many things I have wanted to say after years as an activist , community organizer, preacher, and educator. Now seems to be the time to find those voices; here seems to be the place to share them.
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.