This weekend I threw on my comfiest sequin travel wear and flew down to Orlando to the Young Survival Coalition’s Annual Summit where I was to be not only a participant, but a speaker.
Fun side note about air travel in sequins– you will basically make the body scanner machine implode upon itself with alerts and require a thorough, full body pat down. God forbid my sequins take to the skies when my 9 year old is mere years away from being legally allowed to buy an assault rifle on his lunch break from school. But I digress.
Taking to the skies as a woman with lymphedema means that I get to deck my arm out in its very best compression garments so as to not allow fluid that my body no longer has the capability to filter to settle in my left arm.
I traveled with Rachel Pikelny, the Director of GRACE the Documentary. We may or may not have had a cocktail before noon, but at altitude time is but a construct. She chose me as a film subject. We could have ended up as collegial colleagues or even people who tolerate each other for the sake of a greater project. Either of those would have been normal outcomes. But by the Grace of GRACE, we have become lifelong friends, which is a gift.
Now, if you have read #grancer from the top, you may think I have garnered some level of acclaim, especially within the breast cancer community, but let me assure you, no one gives two lymph nodes about the Granc which was awesome because I was just like everyone else at the conference, a young woman with breast cancer.
The night we arrived was the evening that we debuted the documentary to the conference. The YSC did an awesome job publicizing the event and setting up the space. There were refreshments and cute little bags of popcorn. There were even chilled water glasses for each of us on the panel waiting at our seats.
The film was to start at 8:30 and at 8:20 the room was empty. Ruh Roh. By 8:32, it was standing room only.
Now, I am moved every time I watch the film, but something different happened while watching it in a room filled with contemporaries, women who have walked the walk. The air felt heavier, the laughs louder, the tears more easily shed. The audience reacted in different places than at the other screenings. These women knew. They were all Grace.
A lively panel discussion followed. Women who had the same disease I had were asking me questions as if I was some kind of authority when really, I was just like them except with a camera crew following me. It made me feel somewhat disingenuous.
There was a line of people wanting to take a photo with me afterwards. I was at my pinnacle of awkwardness throughout these interactions because as each woman handed her phone to someone to take a photo I am thinking, ‘You need to be the only woman in this photo. You are me and I am you. My face is interchangeable with yours, my suffering is your suffering. How can I graciously accept this praise when we fought the same monster?’
This is going to take some time to come to terms with. My disease and treatment were really no different from everyone else’s, but I suppose I get a little credit for allowing it to be captured on film?
To me that was easy. I just lived my life and they filmed. The hard part is knowing that my story now lives outside of my body. It will be shown for(ever?) to people who will inhabit my story and make it their own. Inevitably I will be judged for my decisions, judged for allowing my children to be filmed, judged for getting a tattoo. But that is what I signed up for and I need to just come to terms with the fact that the good this film will do will FAR outweigh any negatives.
Below I will share with you some of my photos from the conference so you can see how wonderful it was. Thank you YSC for setting up this opportunity for us to gather, share, support and love one another.