I stopped actively writing and sharing about my cancer journey in 2018. My last entry was after my last appointment at MSKCC, when they told me I wasn’t a candidate for lymph transplant surgery. I figured people had heard plenty from me about how the “new normal” was not normal and no longer new. Progress plateaued. I learned that no one knew enough about lymphedema to be helpful, my immune system was on permanent hiatus, that I would probably never go back to education full time, and that life was going to be different. Very different.
From 2015 to 2018, I fought my reality, and honestly, I was so very angry. While my health was stable, I was far from fine. I just didn’t want to talk about it anymore. No one wants to read about anxiety attacks, depression, and midlife career stall. Cancer, radiation, and surgeries traumatized my body and the aftermath traumatized my brain.
In 2018, I began to accept it. I took on a new job. I tried to move on. And for the most part, I was successful. I found a new niche running a small
library. I found ways to contribute to the community. Eventually, I found my way back to the barn and riding. I wrote Mama, What Color is Your Love? a book that helped me process crippling anxiety. I found comfort singing and on stage.
Through it all, I have continued to struggle with my body. Outwardly, you would never know I had cancer or continue to struggle with the side effects of its aftermath. People routinely tell me I “look great!” which, while a lovely compliment, is incredibly far from my reality.
When you’re young and healthy, you simply assume that all of your limbs will work as they were designed to, that all of your systems will function according to biological plan. My body is like a lifelong friend that betrayed me, and we’re still working on rebuilding our relationship. My arm is not reliable, my hand damaged, but all still faithfully attached. My lungs like to play host to all kinds of infections and crunk, like those awful houseguests who show up and don’t know when to leave. And while I no longer have to stop on the side of the road to sob through an anxiety attack over my fear of dying, my brain frets and stews about what I am not doing, what I feel like I should be doing, or the dreams that I’ve had to put aside. My relationship with my body is complicated.
When I saw Alli Gaulin post about her Forty Over Forty project, I initially dismissed it as vain and superficial. I don’t particularly love pictures of myself, and I was told once that I was impossible to photograph. But then I really thought about it. I have always admired Alli’s gorgeous work. I needed a chance to see the art in my body, no matter how scarred and broken.
During our pre-photo meet and greet, I pitched her an idea. I had seen some beautiful examples of kintsugi portraiture. Kintsugi is the Japanese art of repairing what is broken with gold. The idea is that the fractures can make the piece even more beautiful. I asked if she would be willing to consider the project, maybe not during this session, but sometime.
I have a LOT of scars. Big scars. Scars that still hurt and burn with phantom impulses and the searing pain of skin over nerve over bone. Scars that I don’t like to touch myself or have touched by other people. Alli was not only on board, but she researched, practiced, and honed her technique to make this idea come to life during my session. With care and kindness, she painted my scars, illuminating both my physical and mental journey.
On this, the eighth anniversary of the surgery that saved my life, Alli shared with me the first image from that shoot today, just before I set off to yet another appointment at DHMC. I cried.
My body and my mind have been broken, healed, and mended. I am still a work in progress, a human becoming. The scars are still there, but the fact that I am here to possess, embody, and share them…that is pure gold.
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