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By March 29, 2012May 4th, 2014Blog

While living in Paris, I had the opportunity to meet a beautiful and intelligent woman, Daphne Kolader. Over wine and through tears, we shared our stories of magical struggles and over comings, we laughed fiercely at our awesomeness. And she showed me the makings of a great and touching film about her sister, Ida Kolader. 

When watching this short film, it almost immediately triggered memories.  Far too many hospital visits with my mother, late nights of endless tears, angered emotional outbursts and abuse, the sea of prescription pill bottles on the kitchen counter…There’s so much one goes through when you are suffering from illness and the aftermath of the medications you take. For the first time in my life, I was able to talk with another person who knew what it was like to love someone so severely affected by Lupus, to talk about all the things too complicated to ever discuss in a poem. All that sting and trauma.  I haven’t spoken a great deal about Lupus or its affects on my family, the tumultuous relationship with my mother, and my beliefs that the medical world is far behind on research involving this illness. Rather, I’ve spent recent years trying to heal from all the psychological and emotional trauma physical illnesses can cause families… Where do we even begin to talk about malpractice, misdiagnosis, wrong prescriptions etc? These are the causes we are too afraid to speak about. Or rather these are the discussions we rarely create spaces for. 

Ida and Daphne shared this incredible idea with me, for a foundation, to create awareness. It is something Ida has been investing lots of energy into with her sister.  At first, I was still grappling the emotions of watching this film. The audacity of our healthcare system, the lazy efforts we’ve made to fight for the right to survive and live healthy. All these stored up emotions sitting deep were surfacing and I wanted nothing more than to hold my mother, to understand and explain. And there is still the pain we experienced, we remember, we still live with. This is my first step in trying to help my mother by helping more women like her, spreading the story, sharing the intricacies of the illness… In being a part of this foundation and its efforts, I see it as a  moment of recognizing ourselves in the nameless numbers of women and men affected by Lupus. I ask that you share this with someone, at least one person. That you research the illness as it is almost always misdiagnosed at first and be moved, encouraged. Don’t wait until you are affected to care. Start caring because someone you know does. And don’t be afraid to empathize. Please support the foundation site: