My name means ‘resurrection’. Whenever I stop and think about it, it makes me chuckle. My Bompie (my Dad’s Mom) must have known I needed a little extra umph in my engine to navigate living life with Epilepsy.
There is no piece of paper that shows how many times that I have resurrected myself… I don't have a degree that says I am ‘resiliency expert’, but I think I should.
I have lived with 20 or more seizures a day. I have listened to experts tell me that there was nothing I could do to change that reality. I have looked into the eyes of doctors telling me ‘You've done everything, and there is nothing left to do; you might want to start really accepting that you may be living with 20 seizures a day for the rest of your life.” A truly horrible thing to hear…hearing it from multiple experts was hard, really hard.
So I crawled my way onto a yoga mat and became the worlds’ worst yogi - a meat eating, recovering perfectionist. I practiced being IN my body instead of dragging it around like inconvenient luggage. I took all the discomfort and wrote – free flow, journal style. Somewhere in that blend of yoga and writing I learned how to be comfortable with uncomfortable….not graceful, not at peace, just comfortable. I’ve always written, though I have spent many years trying not to be the writer and poet that I am. I had a very vivid image that somehow, writing would result in being poor and alone…seizures had already resulted in a lot of isolation in my early childhood and it was something I tried hard to avoid.
Over time, a certain kind of magic emerged out of hanging out in the middle of myself and my journey of medical messiness. Not the least of which was overhauling the number of seizure’s I was having. I still have seizures, but now I have cluster’s seizures about twice a month, instead of 20 a day.
It was this process of overhauling my seizures that led to me being asked to speak at a conference at Berkley in California. Once I knew that was what the organizers wanted me to speak about, I really didn't want to. I was tired of talking about my life with seizures. I didn't want that to be the narrative of my life.
So instead I took a handful of poems I'd written over the years and I mashed them all into one poem, and used that as the opening of my talk. I let the poem tell my story, and then dove into what was required of me to transform my health: having faith in myself, leaning into the idea that I was entitled to explore alternative options and believing in the idea of the impossible being possible.
This poem, this talk, cracked open a field of possibility that I am excited to continue digging into. I have connected with people in film, dance and other performance arts which has allowed me to share my words and photography alongside them. The poem turned into a solo project, which has morphed into a community creation. I am excited to use “20 Seconds of Courage” to deep dive into a bigger, shared conversation with other people about ‘how’ they rise with resiliency to the challenges of living with a chronic health condition. I know in my bones that there are more pieces, poems and images to be written, created and explored for this project. I also know I can’t do it alone.
I am excited and nervous to be reaching out and asking people - are you willing to share how you rise again, and again? What makes you find a way to laugh? Or if you are in a moment where you don't know how to do that, what makes you choose to take one more step forward? What helps you What do you need laugh, cry and create again? *
To share your story of resurrection with Anastasia for her ongoing multi-media art project, please send her an email at: firstname.lastname@example.org
* stories have been condensed and edited