What it's like to live with a progressive neuromuscular disease

Wednesday, September 6, 2017

My Podcast interview for “Last Cut Conversations” with Samantha Paige

Two weeks ago I attended the Neuromuscular Disease Foundation’s 4th annual patient symposium. Though I thought I’d be ready to blog about it by now, it turns out my mind is still busy unpacking all of my thoughts and feelings around it. There was the collective grieving of the failed clinical trial, the experience of meeting patients I had only ever corresponded with on Facebook, the painful realization that I am by far no longer the least progressed patient in the room and finally, the sobering news that the most promising treatment-gene therapy-will require a staggering 3.5 million dollars in funding.

In the meantime, I want to invite you to listen to an interview I recently did with Samantha Paige for her podcast, “Last Cut Conversations.” Last Cut is a multi-media documentary project that Samantha is working on about “those big life decisions (last cuts) made to bring us closer to living a life that feels like our own.” You may have seen Sam proudly and boldly baring her mastectomy scars in Equinox’s “Commit to Something” ad campaign or more recently, featured in Allure magazine’s video series,  “Dispelling Beauty Myths.” Sam has made it her mission to live life with honesty and authenticity and she is inspiring others to do the same.

I was honored to spend time with Samantha and her incredibly talented collaborator, photographer Lisa Field.  I talked about what it’s like to live with a debilitating disease, what I believe is crucial to emotional survival (love), how I think we can do better in our conversations around disability and loss, and what true freedom looks and feels like for me. I also touched upon the cultural stigma of disease in my Persian community and offered some suggestions on how to truly show up for someone who is suffering. Oh, and I also somehow managed to share the fact that people called me “Slash” from Guns and Roses in 8th grade because of my big hair. (Photo provided upon request.)

Just when I thought I couldn’t feel any more vulnerable, I learned that speaking spontaneously into a live microphone about deeply personal experiences feels a whole lot more exposed than sitting in the comfort of my own home, editing carefully chosen typed words in a blog post.  But particularly since we are living in such difficult times in which we all need more kindness and humanity, I feel it is important to put my voice out there, even when it’s a bit uncomfortable.  Thank you for listening.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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