What Telling My Own Story Taught Me about Portraits that Move

Recently I shared special memory of mine on the Portraits that Move Facebook page, my interview on NPR's Only Human by host Mary Harris.  Reading the reactions of friends and clients prompted me to dig a little deeper into what the experience of being interviewed was like for me, a person who has spent her career on the other side, asking the questions that help others tell their stories.

What I discovered in my own experience confirmed the importance of telling and sharing our stories, and the very real ways in which that act can be healing for ourselves and for our relationships.

Parents and children

My father joined me for the interview to discuss his role both as a doctor and a father of a child with health challenges. Having my father in the room while I was being interviewed was very moving. On one hand, I felt protective of him and was aware of a desire not to say anything that would hurt him or my mother in any way. At the same time, it was an incredibly healing experience. We had the opportunity to talk about how my health affected both of us, which was something we had rarely done before.

It gave me an important window into how both parents and kids must feel during
the interview process when I create our Portraits that Heal films in particular. Parents feel a need to be involved, to listen, and to be part of the experience. For the children we work with, both for Portraits that Move films and Portraits that Heal films, sometimes having a parent present for the interview process may be comforting, but often they may feel more free without a parent in the room listening to them answer our questions.

I often wonder what I would have said if the interview was with just me. I would
have likely felt more vulnerable and would not have had the opportunity for
connection and healing that occurred. When I interview kids now with their
parents in the room, I look at it as an opportunity for connection, for what we are
doing to be a conversation starter. I hope that after I leave the shoot they keep
talking and never stop.

Switching roles

Having been through the experience of being interviewed about personal aspects of my own story, I think I am a more gentle interviewer now. I go into each shoot with fewer specific expectations. In the case of the Only Human interview, I think both the host and I had a specific plan for how the interview would go and the final story is different than what we both imagined. This was only possible because of the openness on her part and the level of honesty on mine. We were both willing to go where the morning took us. I think the best experiences and stories happen this way. Ultimately, it is important to me that our families enjoy the experience of creating a Portraits that Move film. When they do, that joy is apparent in their video.

Talking about health and healing

Since the Only Human interview two years ago, I am even more sensitive to creating space for children who are living with health challenges to tell me their stories in exactly the ways they want to. Every illness is different and every experience is different. Kids deal with their
health in all kinds of ways and however they want to talk about that is up to them.

I feel grateful - even more grateful now - to share in their stories. Telling mine was an incredible exercise in vulnerability, but it was something I felt called to do. The way in which I told my story was specific to me and to where I was at at that particular moment in time. I believe our Portraits that Move videos and Portraits that Heal videos reflect a similar intention to capture the present moment in the way feels right for the people we are documenting.

Love and Thanks for Sharing a Beautiful Year with Us

Dear Friends,

2016 has been such a wonderful year for us. We were thrilled to release new kinds of videos from Portraits that Move including our Generations Video, the Portraits that Move Baby Video and our brand new gift card (perfect for your last minute holiday gifts!).

We worked with several families for the third year in a row and wrote many blog posts - including some for A Child Grows in Brooklyn.

We were also lucky enough to be featured in Forbes, Working Mother Magazine, the Women Killing It podcast, and NPR's Only Human.

Most of all, though, we were so blessed to have spent time with you and your families. We love all of our time with you and can’t believe our good fortune of getting to do this work. It is deeply fulfilling to share a moment in time with you, to get to know your children and to share in their brilliance. Thank you so much for trusting us, for believing in what we do and for sharing our work with your friends and family.

I want to wish you and yours a happy and healthy holiday season. May it be one that is filled with magic, joy, shimmer and hope.

We look forward to sharing some new things with you in 2017.

Until then, thank you, thank you!

With deep love and gratitude,

Susannah and the Portraits That Move Team

Telling My Story

In 1971 I was born prematurely with an extremely rare esophageal birth defect. I had several surgeries as a baby and spent much of my early life in and out of the hospital. It was touch-and-go for a very long time. Most of my childhood after about age 3 was healthy and my health stabilized until I was about 21.

Since age 21, I have had 3 major surgeries to repair my esophagus, hundreds of tests and several long hospitalizations. My digestion will never be “normal,” and the struggle I deal with is constant and consistent. It is at times harrowing, often uncomfortable, and extremely confusing.

I have alluded to my health struggle before without ever telling my full story. I have always known that my experience is what allows me to tap into the richness of life and that I bring that to all of the conversations we have with kids, most especially to those with illness. I am deeply aware of how short life is, how fleeting and how meaningful.

So, why now? An opportunity came into my life to tell my story as part of a show ONLY HUMAN on NPR's WNYC.  I meditated on it and decided that sharing my experience could be helpful to others. When I looked deep down, I recognized that it was unfair to ask others to share their experiences if I was not willing to share my own. 

Listen to me tell my story:

http://www.wnyc.org/story/life-medical-experiment/

I hope it makes you laugh, brings you some insight into who I am and why documentation is so important to me. I hope it moves you, makes you think, and encourages you to share.

Thank you for listening, for reading this blog, for sharing your own stories and most of all for supporting me and our work. All stories are worth telling and I appreciate your support in our mission to do so.