I was diagnosed with myelodsplastic syndrom (MDS) about five years ago. It is a blood cancer curable with a bone marrow transplant for which my oldest brother is a perfect match donor (and my only match currently in the database). I have been holding off treatment while I see how my body responds to a change in diet (paleo/ketogenic) and supplements before putting in the toxic chemotherapy required for transplant. While my doctors at Sloan Kettering are strongly recommending the transplant as soon as possible, which takes about a year from start to complete recovery (assuming all goes smoothly), they are respectful of my decision to postpone and continue to be monitored.
I’ll save you from the platitudes about how precious life is, but I really do try to live each day as if it’s my last. Nothing like years of excruciating daily pain, three surgeries, hospital infections, misdiagnoses, weekly blood tests, six bone marrow biopsies, and making it into the medical books for having illnesses that have never been documented fosters a kind of baseline deep gratitude for my life—especially now that I have been living pain-free for over two years.
Nobody wants to have cancer. It may be the only thing we can all agree on. (Not even Trump supporters want cancer!) But nobody wants to grow up gay in the ‘80s in a religious household like I did, either. I lived each day of my closeted adolescence thinking that who I was would disappoint, scare, and upset all the people I loved in my life. Who I was could have excommunicated me from my community and even my own family. But I vowed to devote my entire adult life to making sure kids (and adults) didn’t feel like I did growing up.
I was an out and proud gay pop music artist at a time when many feared that being open about their sexuality would ruin their careers. I made every attempt I could to wave the gay flag, from using male pronouns to men-on-men love scenes in my videos. I told stories from a pointedly gay perspective.
Ari Gold performing at the 10th Annual amfAR in 2009.
Yet, no matter how many gay prides I performed all over the world, I still carried a heavy bag of gay shame with me. An interview with Oprah and recording artist India Arie gave me my own a-ha moment. Oprah asked India how it was possible that she could be riddled with insecurity when she writes and sings such empowering black female self-esteem anthems. India responded with a quote from Oprah’s own mentor, Maya Angelou: “We often teach the lesson we need to learn most for ourselves.” In that moment, I understood that’s what I had been doing all those years. I was so proud because I had been so ashamed.
Soon after I was diagnosed with MDS, I realized my shame had returned with a vengeance, this time as cancer. The ultra-orthodox Jewish newspapers I grew up reading described AIDS as a punishment for homosexuality. My religious community thought that just by being gay one would have AIDS or would get AIDS—whether that person was having sex or not. (This presumption was similar to the time a straight doctor assumed I had butt cancer simply because I was gay without knowing anything about my personal sexual preferences or practices. He was wrong, I didn’t have anal cancer.)
Shame lived so deep within me that I felt like it was my fault I had cancerous cells in my marrow—not just because of something I may have done or had been exposed to, but because of something I was. Researcher and professor Dr. Brené Brown tells us that guilt is “I did bad,” but shame is “I am bad.” Now the shame monster was back, dressed in a new bloody outfit straight out of Carrie: The Musical.
You can imagine my assumption that people would treat me with greater kindness and gentleness when they heard I had the Big C, but it turned out to be exactly the opposite. Susan Sontag made sense of this experience in her 1978 book Illness as Metaphor.
“[Cancer] arouses thoroughly old-fashioned kinds of dread. Any disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious. Thus a surprisingly large number of people with cancer find themselves being shunned by relatives and friends and are the object of practices of decontamination by members of their household, as if cancer, like TB, were an infectious disease.”
Close family members have accused me of making it all up. I can’t tell you how many times I’ve been reprimanded by various friends and family for making public posts about my condition. I’ve been told to my face that I was not called for a job or even an audition because they assumed I was “sick.”
Then there was the time a married couple I’m close with sat me down and said: “We are upset with you that you told us you had cancer on Christmas Eve. It ruined our party.”
I swiftly apologized. Ruining a party goes against everything I believe in! Perhaps being Jewish I didn’t understand the rules of Christmas, but my non-Jewish friends certainly didn’t understand the rule of being Jewish: There’s never a bad time to talk about our ailments! (Just make sure you say the word “cancer” in a hushed, whispery tone. “Caaaaancer.”). It reminds me of all those times I was accused of “throwing being gay in peoples faces” simply because I mentioned it—or sang about it.
The healing work of art-making in addition to a multi-prong approach toward self-care that included years of therapy, recovery meetings, self-help books, meditation, and Oprah, helped me navigate, live with, and right size my shame monster. A low red blood cell count won’t stop me from putting on a kick-ass show, but it also means I reserve my energy for those who don’t hang their shit on me. I accept whatever way people are capable of loving a profoundly twisted artist like myself, give way less fucks about how my health is affecting them, and way more fucks about my own boundaries.
Self-care is a full-time job, especially knowing that I cannot ever again put my complete trust in the medical establishment. I listen to and respect my doctors knowledge and skills, but every decision I make about my body must be mine and only mine to make. The reality is that nearly 40% of Americans will be diagnosed with cancer at some point in their lifetime. There is much work to be done to change the way people think of illness and disability, and good health care is not a privilege but a human right.
If cancer is the card I’ve been dealt, I have no problem using it. A good cancer patient never uses his cancer card and everyone around them feels more comfortable with the disease. But I am a very bad patient, like spank-my-ass-when-I’m-bad bad. Did you know the cancer card is free and you don’t have to be pre-approved? I like to use my cancer card like new money uses their Black Amex. It’s the card I pull when asked to do things I don’t feel like doing. It’s the card I take out when I’m told I need to get a job if I am having trouble paying the bills; the card I use when I need to go away on a vacation from not working; the card I play so my friends with money can take their own credit card out and treat me to dinner—and a Broadway show! And most importantly, it’s the card I take out to remind myself: Easy does it, stop being so hard on yourself.
So I say, thank you, cancer. Thank you for being the greatest, gayest, sexiest thing to ever happen to me, for reminding me that I do know myself best, that I am worthy of living my best life—worthy of loving and being loved. Thank you cancer for showing me that my parents do love me unconditionally despite our past struggles. And thank you, shame. For teaching me that as old, insidious, and powerful you may be, I am still more powerful. And so is love. And the truth.
If you are a cancer warrior or a warrior of shame, don’t forget to treat yourself better than anyone else could ever treat you, tell your story proudly every day you walk this earth, and use that fucking cancer card, gay card, or any card that you’ve earned as if you have all the credit in the world.