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this is … a brain tumor documentary unfolding in real time

Emory Josh and Jenna HR_-18

Jennifer Keenan Giliberto’s photography captures life’s moments in an emotionally resonant way that transports the viewers into the narrative of each photo. Her meticulous eye is able to find and record a scene in a way that loses none of its impact. She’s also a brain tumor survivor. But this isn’t her story (well, in a way it is), it’s about her documentary, this is, the journey of Josh and Jenna, a husband and wife. She is documenting their lives as they live through the treatments and surgeries to combat Josh’s Grade IV, glioblastoma.

After learning about the project, I asked Jennifer about how it began, what she hopes to portray, and how she hopes this project will motivate others to take action in the brain tumor community.

What inspired “this is?”

As a brain tumor patient myself, I have often felt that the experience has been an isolating and lonely journey. It is often difficult to articulate what the various elements of the journey look like and how emotional they are. I’m a storyteller at heart and was inspired to tell the visual journey of a patient with brain cancer. Words can tell a story and share a perspective, yet there is nothing more intimate than sharing real life through images.

Emory Josh and Jenna HR_-77

Jenna at the hospital. (credit: JKeenanPhotography)

This is was inspired in part by my own journey and a frustration that through others eyes my identity was being lost to my diagnosis. Life is messy, unfiltered and overflowing with highs and lows. I was inspired by the magnitude of what this diagnosis means to patients and their families and have felt a tremendous responsibility to photograph every aspect honestly and transparently. I set forth to share an uncensored photographic documentary that not only captured Josh’s journey with brain cancer, but as equally important would document Josh and Jenna experiencing life together.

As a brain tumor patient myself, I have often felt that the experience has been an isolating and lonely journey. It is often difficult to articulate what the various elements of the journey look like and how emotional they are.

How did you approach photographing Josh and Jenna?

It all started with a phone call. After the neurosurgeon presented the project to them and they were receptive to participating, I spent a significant amount of time on the phone with Josh and Jenna.

Emory Josh and Jenna HR_-7

Credit: JKeenanPhotography

It was critical that they trusted me and that they understood that I respected how vulnerable they were. We had less than 24 hours to get to know one another before we would meet in the pre-op waiting area and I would begin photographing them.

We spent a lot of time having open and honest conversations. No question from them was off limits for me, which was critically important I felt in developing a rapport and trust so quickly. I let them know I was willing to answer any questions they had at any point, but in order to not influence their behavior or the environment, I would observe and remain silent until they engaged with me. It was critical for me to blend into the background in order to observe and capture the nuances of what they were experiencing.

Emory Josh and Jenna HR_-66

In the OR (credit: JKeenanPhotography)

Words can tell a story and share a perspective, yet there is nothing more intimate than sharing real life through images.

I had previously been in the OR and was familiar with the layout which was a benefit in planning out my shots. I engaged the medical staff quietly and explained what my project was so that I would not serve as a distraction to them. I had to walk through public spaces where Josh would be to evaluate how I would shoot in order to avoid other patients and families whom I was not permitted to photograph. There was a tremendous amount of mental “If this, then that…” contingency planning. There were no do-overs so it was critical that I was always observing and my mental focus was tack sharp.

As you continue to follow the two of them, what aspects of their life impact you past the photographing of their moments?

Josh, Post Surgery. (credit: JKeenanPhotography)

I am not sure you can so intimately follow and document someone’s life and not in some form be affected. This is certainly a project I knew I had to be emotionally ready to tackle. As a patient myself, many of Josh’s experiences were once my own and remain raw in my own heart and soul. Yet, I knew that I had the emotionally capacity and endurance to take this documentary project on.

There are moments thus far that I know will be with me forever. Hearing the pathologist on speakerphone in the OR confirming the diagnosis of GBM was beyond heartbreaking. Hearing the audible gasps and grunts from behind surgical masks as the room fell into a brief moment of silence was so intimate and compassionate in the midst of an invasive surgery and devastating pathology news.

I struggled emotionally to walk out to the waiting area with the surgeon to deliver the news to Jenna. I had to emotionally detach and simply get behind the lens, observe and document what I already knew she was going to be told. There was a brief moment when her eyes, which had been locked onto the surgeon, met mine through the lens. I wanted so much to simply walk over and hug her, yet, I knew that was neither possible nor appropriate. It was painful. Later, Jenna would tell me that in that moment when we locked eyes, that she understood that aside from the surgeon, I was the only other person in that moment who understood the news she was receiving.

There have been light and humorous moments that I hold in my heart as well.

Ultimately, I hope this is moves people to make a difference in the brain tumor community.

I feel a profound sense of responsibility with the access Josh and Jenna have afforded me to tell their story. They are always a fixture in my thoughts and I have tremendous respect for them both. It is a privilege to be welcomed into people’s lives in the midst of a crisis and be trusted to honestly document it all. I am humbled that I am able to tell this story.

What are your takeaways from recording the lives of those touched by brain tumors?

JJ HR-7509

Josh, Jenna, and their dog doing some physical therapy. (credit: JKeenanPhotography)

Since this is an ongoing project, my answer today may vary from my answer a year from now. Life is fragile. I hope Josh and Jenna’s story inspires and motivates you to learn more, do more and give more. I hope this project and the images give people pause to think about the tremendous need for research funding, improved treatments and better outcomes. Ultimately, I hope this is moves people to make a difference in the brain tumor community.

You can see the entire project as it unfolds here.

  • Barb Sonnemann

    THANK YOU

  • Maurice White

    Thanks for sharing this as my wife had a the same issues several years ago.

  • 4oregonz

    Blessings to this family and may God’s Grace hold Jenna and their daughter close during this difficult time. I see my husband in Jenna…the caregiver. It has to be MUCH harder than being the patient…

  • Paulette King

    So many of these images stirred up so much emotion in me. I lost my husband to glioblastoma in 2012. What a beautiful documentary of the journey. Thank you for sharing to bring awareness to this terrible disease. God bless you

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