“The urgency to care and to share what resources I have, whether inner or outer resources is paramount to me”
“The most difficult part about being a survivor is the intersections of my survival. Not only am I surviving HL but I am also surviving as a Black man and a gay man. As an artist. As a poor person. It’s been so lonely trying to navigate the world with having so many strikes against me”
1. When were you diagnosed with HL? How old were you?
I was diagnosed in October 2004 when I was 18 years old.
2. What was the biggest challenge during your treatment?
Everything was the biggest challenge for me. I was 18 years old and fought tooth and nail to get to college. I was a freshman at Morehouse College in Atlanta, Georgia. It was 5 weeks into my freshman year and during midterms. I couldn’t wrap my head around the fact that I wouldn’t be returning to school AND I was no tasked with fighting for my life. I returned to my hometown, Kansas City, Missouri, to undergo all the blood tests and biopsies which ultimately led to me being diagnosed with and treated for Stage IV HL. Heartbreaking to say the least. So, everything from leaving my peer group to beginning chemotherapy in the winter left my deeply crestfallen.
3. When did you first meet another HL survivor?
I met Quiana Parks through her cousin, Adriane Brown, in 2016. She is the same age and went through treatment at the same time. It was an extremely emotionally expressive moment for me. I love her.
4. What has been the most difficult thing about being a survivor? The most rewarding?
The most difficult part about being a survivor is the intersections of my survival. Not only am I surviving HL but I am also surviving as a Black man and a gay man. As an artist. As a poor person. It’s been so lonely trying to navigate the world with having so many strikes against me. How the oppression of the world really crushes each one of these parts of me and collectively they are crushed. A beloved artist, thinker, feeler, activist and someone who faced breast cancer, Audre Lorde once said, “There’s always someone asking you to underline one piece of yourself. Whether it’s Black, woman, mother, dyke, teacher, etcetera… that’s the piece that they need to key in to. They want to dismiss everything else.” I wish the main part of my struggle was at least one of these things that I have been being penalized for embodying (as mentioned in the beginning of my response to this question) but the truth is that they all do and I am punished and denied systemically a chance to live decently. At 18 years old I never had a starting chance to be self-sufficient and independent. I have been tethered to a medical system that has never cared about me. I haven’t had consistent care and I struggle with even using the word “care” because it didn’t, hasn’t and doesn’t feel very caring. So, the compounded factors make survival a very very difficult thing. I am often afraid I won’t make it to 40 years old. I’ll be turning 35 on December 23rd. What a surprise. I feel like I am withering away.
The most rewarding has been my ability to understand the shadow side of life. To understand how “darkness” serves me. With such a young and pivotal diagnosis I was ushered into the realm of sickness, dying and death. I have deeply connected with many people who are sick and dying. I continue to honor my dear loved ones who have died. The urgency to care and share what resources I have – whether inner or outer resources – is paramount to me. Creating the world I need/ed for myself inspires me to listen deeply and serve others in whatever way/s that I can. I never personally feel limited but I do feel the limitations that are put on me because of anti-Black racism, homophobia, classism, elitism, ableism and the countless forms of oppression. The struggle has been very real and the truth is that even iron wears down. I can’t do it alone no matter how inspired I am or inspiring others find me. I need/ed critical help and support for a very long time. So, I guess the reward has yet to come. Coming?
5. Name the most interesting place you have ever visited or would like to visit after COVID?
I would say the most impactful place I’ve visited is Salvador, Bahia, Brasil. I don’t believe that there will be an “after COVID” just like there isn’t an after cancer/HL. However, I do look forward to when I will be able to properly visit Africa. I’ve spent some time in South Africa over the years. But I really see myself spending time in Burkina Faso and other African countries. Burkina Faso is the home of two very important Spiritual teachers that have been major healers and instrumental in fortifying my faith in my body and genetics as an African person. Malidoma Patrice Somé and Sobonfu Somé (may she rest in peace) have written books, journals and lead workshops that are rooted in their traditions of the Dagara Nation/People and they have made this living experience a bit more tolerable. They have reminded me through their words that the reliance on Spirit is essential to not only living but also dying. I have infinite reverence for their understanding and eons of practiced faith which is tremendously left out of the West and the belief systems and all systems that impact everyone. Sobonfu once said, “There is a deep longing among people in the West to connect with something bigger — with community and Spirit. People know there is something missing in their lives, and believe that the rituals and ancient ways of the village offer some answers.” I want to be in a place where this isn’t a concept or something you can buy but it is essential to the day to day experiences.
6. Who is the person you admire most?
I admire people who endure suffering and really try to make sense of what they have or don’t have. The ones that can’t help but express what happened to them and how it still impacts them. The ones that keep repeating how they feel because they haven’t and don’t feel heard. Because I know that this chips away at their Soul/s. That hurts me deeply. But I admire the tenacity and inability to give up in their eye/s and heart/s. The ones that go out with a fight. I never say people “lost their battle to cancer” or “cancer got the best of” because cancer died too when said person departs the physical plane.
7. What would you say to your pre-Hodgkins self? Words of wisdom, advice, “If I had only known…”
(Continue to) trust yourself and your heart, mind, Spirit and Soul. Be firm but lead with soft hands, a soft voice, soft heart, soft eyes and love. Always give thanks.
8. Where do you see yourself in five years?
Hopefully, still living if the world can give me that grace. I can’t be here if others don’t see me here and/or want me here. It’s not even that I refuse to have the onus on me. I just can’t simply do it alone. No one can. Especially not one who has already been fighting vigilantly just to be here on this earth physically.