this is… not the end. A brain tumor documentary concludes, celebrating life

“Life is fragile,” Jennifer Keenan Giliberto said. The Georgia photographer’s work shows the complex fragility and strength of the human spirit. She’s also a brain tumor survivor. In May of 2015, I covered her largest project to date, this is … documentary.

The photographic documentary followed the lives of a married couple, Josh and Jenna, as they contended with Josh’s diagnosis, treatment, and surgeries after being diagnosed with Stage IV glioblastoma (GBM).

Sadly, the project was completed in late 2016, when Josh passed. What follows is a Q&A with Jennifer about the attention this is received, being a fixture in her subject’s lives, and what the largest takeaway from this project was for her, as an artist and brain tumor survivor.

What has the response been to the project?
The project has been overwhelmingly well received. I knew the work was powerful and would be impactful; however reading the outpouring of comments and thanks from around the world thanking me for transparently showing what this journey looks like was often overwhelming. The project has been viewed worldwide and has touched far more than those in the brain tumor community. The global visibility has given a voice to not only those in the brain tumor community but to all those who share in the power of the human experience.

Josh and Jenna became pregnant and then had a baby. What was it like to be a part of that process while documenting a life that was, in some ways, uncertain?
There was certainly a duality of emotions while documenting Jenna’s pregnancy and the birth of Reilly. Pregnancy and the birth of a child is a tremendously exciting, exhausting, exhilarating, challenging, joyful, and hopeful event under the best circumstances. Their journey into parenthood was unique and I think it is important to acknowledge that in-fact; everyone’s journey into parenthood is unique and no family or experience is the same.

My role was to document and capture the essence of their experience during that time and weave it into the larger context of their life journey together. It was terribly emotional in the delivery room and impossible to not recognize the symbolism of the beginning and the end. This has been an emotionally charged journey to document from day one and it has been deeply personal.

Never has the yin and yang of life been more apparent than during the 16 hours I spent documenting Reilly’s birth. Perspective was my number one priority. I had to put the events unfolding in context and convey the emotions surrounding how this delivery and was so unique and un-paralleled.

There are images where you can literally fold in half and find two different story lines that still blend together into one. I chose to approach documenting the birth from a raw emotional perspective; wanting the viewer to feel the immense emotions that filled that delivery room, feel deeply the strength, bravery, love, commitment and compassion. I was less focused on documenting the entire birth, and instead deeply focused into the moments that spoke to who Josh and Jenna were in the moment. Less was more.

In the 20 months you spent with Josh and Jenna, was the line between documentarian and friend blurred? Were some things too emotional to capture?
We met as strangers and developed a relationship based on trust and open communication. I am blessed and privileged to have developed a deep friendship with Jenna and look forward to seeing Reilly grow up. As I began photographing them, it was critical to blend into the background in order to observe and capture the nuances of what they were experiencing and not get personal. Yet, it was inevitable that we became emotionally connected. I don’t believe you can intimately document life and death and not, in some form, be affected and changed. I felt a profound sense of responsibility with the access Josh and Jenna afforded me to tell their story and while we did develop a personal relationship over time, that connection did not blur how I documented their lives.

The last three months documenting Josh, Jenna and eventually Reilly were the most difficult on every level. Documenting the day that Josh passed away was hands down the most difficult thing I have done. After 20 months, I had become emotionally connected to Josh, to Jenna and to their entire journey. It was profoundly difficult to separate your emotions and photograph however, the reality is that those emotions bring forth stronger images and more focused work.

I knew with every shutter release, a painfully personal image was being captured and that these would be the most difficult images to witness, take and eventually images that would resonate deeply with those who viewed them. I carried for 20 months an immense amount of responsibility on my shoulders to not only give Josh and Jenna’s story wings, but to do so transparently, honestly and with dignity.

These would be a collection of images Reilly would one day view and would forever memorialize a period of time in her parent’s lives and be a looking glass into the love and commitment they had for one another and for her. For patients and families who have walked this path, I knew these images would be powerful portrayal of the raw impact brain cancer has.

As profoundly difficult as it was to bear witness and capture these images, failing to do so and not including the most emotional would be an injustice to the project and the entirety of Josh and Jenna’s life journey with brain cancer.

What was the largest takeaway from the project for you?
Life is fragile.

I know this as a brain cancer patient myself and while I do my best to live life to the fullest, I cannot help but feel a deeper sense of perspective now that the project has ended.

Witnessing and documenting the human experience has been an extraordinary experience that has shaped, changed and influenced me. I have grieved as deeply as I have grown. From the outset, I had a passion and purpose to put forth a body of work that meant something. I am deeply proud to present, after 20 months, a body of work that gives a cancer community a voice, has an impact and hopefully alters how brain cancer is viewed, funded and researched. Ultimately, I am grateful that this project and the images therein will begin a larger conversation that may alter the path for future patients.

TAGGED WITH: brain cancer, brain tumor, Cancer, GBM, glioblastoma, brain tumor community, Treatment, Patient life

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