I recently have gotten closer to a performance artist who also went through treatment, but years before me. Being able to bounce ideas around with him has really affected my perception. When I first met him he was obviously magnetic and warm, and it fascinated me how easily he used words like survivor and cancer and fighting... words that I think I fear(ed) giving power to. I grew up being taught and believing that words have significant power, and once a thing is named it has a form... not to fear but to be strategic and care-ful with the way I speak for my own sake. I grew up believing that the mind had power enough to truly heal. And to not say I was worried about something in my life, but maybe flip it and say I was feeling challenged. It may seem silly, but especially when I am verbalizing stuff, it still helps my constitution to not reinforce negativity through wording. I spent the last two years carving out a language to talk about what I was going through that felt right to me... if you noticed, I never said "I have cancer," or "I am fighting cancer," because I didn't believe it was something worth "having" and I saying I was fighting it inferred that it was something of a threat to me... I did not want it associated with my identity so I was careful to say something like, "I am going through cancer treatment (maybe leaving out the "cancer" even, so as to not name it)." So this is what confused me... I met this amazing person who I saw myself in... like a mirror... and he was comfortably using these words that I didn't use. I never called myself a "survivor." Besides evoking Gloria Gaynor or Destiny's Child it felt like that would be boxing me into a group of people who might not have survived. Maybe that was it... the stigma that our society has around cancer is epic and I didn't want that to become my identity. When I was first diagnosed I remember being really dismissive of the cancer culture... very old women or very young children, pink clothing, shaving heads, emotional "walking," wearing fancy Hasidic wigs, and "fighting" more often than a Korean soap opera. That was not me. But then again, I remember vividly the moment I was diagnosed, and I saved the email I sent to my family later that day- I had no idea what I was about to go through. No idea.
I told them my diagnosis was stage 1- no chemo... and remember carefully framing my communication as to not evoke pity or fear... for them... and probably myself too. I didn't think I'd have to tell anyone who wasn't family... I was pretty dismissive. As my treatment progressed and they found the cancer had metastistized to lymph nodes and upgraded the staging along with an agressive oncotype test result (geez, i'm impressed i still have this language in my head), I felt more and more that the western system (or any of them) was not meant for me. The doctors said I was so young, so healthy, not genetically at risk etc etc etc. And I couldn't relate to any of the support systems they had set up. The group therapy was mostly old women who I felt were whiney, the free makeover classes provided by my hospital gave away bags of makeup for white people, and I made too much money to qualify for assistance and too little money to actually pay my co-insurance. Even my doctors were taking educated guesses on a treatment strategy because the Western way of validating testing hadn't been studied for my "demographic." Like I was saying- none of it was for me. I didn't fear it thought, I felt the eastern care I had access to would help me deal with whatever the western care threw my way, so I would go ahead and do it all, because I was a strong and stubborn Taurus who had too many good things going on to sweat whatever I was going through. Most of that I'm sure was survival instinct. I am grateful for that kind of biology.
Anyways, so, my person uses the word "survivor" to describe us. And at first that bristled me. Then I stopped and was floored that I was so sensitive. That's it... it is in the intention in the words that give them energy, and his intention is good... more than that, because of his way of approaching post-treatment life, I was able to connect emotionally with him and with myself more accurately than I have ever. Admitting (3 years later) that this was kind of a goddamn big deal. And words are complicated. "Survivor" and "cancer" and "fighting" should all be thought about on a deeper level... maybe not thrown around like the corporate fundraising organizations do... Surviving should be more than escaping death, as our society has conditioned it. Surviving can be emotional and career success and vision and faith and confidence and happiness. These are what surviving is. Anyone who has felt adversity or challenge in their life is surviving it, no? "Cancer" might have a stigma in my world, but I can help re-identify that word... every human has cancer cells in their body... health or luck or unexplained forces cause these cells to "over-heal" and get stuck and that becomes a problem sometimes. It is just a label. It doesn't mean what it used to mean. And "fighting" I still haven't gotten my head around yet, but I have accepted (adopted, reclaimed?) that word with a giggle since I am addicted to the aforementioned Korean tween tv. But really, the fact is above any crazy physical science that was going on with me the past three years, it has been a goddamn emotional roller coaster that in retrospect I'm pretty gd proud I went through. Beyond what one would immediately imagine was emotionally difficult, some things I didn't anticipate at all were really the biggest challenges.
I learned how important boundaries, letting go and optimism are to my health. How important having my art career taking off during treatment was to my recovery- not only to be distracted and to have a plan for my future but to also pour all of the energy into this thing. To find a way to give back that made sense to me. I watched people fall away who (fairly enough) could not handle themselves around me while I was in treatment... it is a lot to witness and no prescription on how to help. I watched people step up for treatment and disappear when my appearance healed. Again, fair, the urgency of my illness was gone and the more subtle, complicated healing began. And I have grown closer to a bunch of people through this process- people who stepped up and just stayed. I trust in the flow of energy in and out of my life and trust that even if I miss someone, they are not around for good reason. And I grow.
I have the appearance of health now but I have three more years of oral medication to reduce hormones and prevent recurrence... and there are side effects that I feel and see every day (these have been the more complex healing to witness). I am still grateful. I know these are little things, and they are oppressive sometimes... I'm tired of being tired and gaining weight despite my work outs or diet and tired of the roller coaster emotions... these get tiring... but I even still have an army of therapists around me helping me figure it out.
I am tired of watching myself write now, but again want to express my deep and daily gratitude to every single person who has touched my life in the last three years. I hope to pay it forward.
<3
remember?...
my roomie washing my hair when i had no use of my arm...
me loving scarves
