Bearing witness: A journey through life, death and birth

Words & Photography by Jennifer Keenan Giliberto

In March 2015 Jenna and Josh were two days into their honeymoon in Taiwan when Josh began experiencing neurological problems. Twenty-four hours later the newlyweds were on a flight back home to Atlanta, where Josh was diagnosed with grade IV, glioblastoma multiforme, an aggressive brain cancer few survive.

Jennifer’s sojourn with Josh and Jenna lasted 20 months. She photographed Josh’s brain surgery; the couple’s long days in the hospital; a pioneering therapy that gave them hope; follow-up testing; tasks of everyday life; doctor’s office visits; Jenna’s pregnancy; Josh’s decline; the birth of baby Reilly; Josh’s death soon after.  —Lorna Gentry

In my heart, I believed that a comprehensive, unfiltered, raw view into what brain cancer looks like would give a voice to a community of patients and their families who often are never heard. I knew these images would matter before the shutter closed on the first. My commitment to this project has deep roots, and while this is not about me, my own experience was the seed from which it grew. I knew these images would matter before the shutter closed on the first. My commitment to this project has deep roots, and while this is not about me, my own experience was the seed from which it grew.

I have brain cancer, too.

Just shy of my 33rd birthday, I had a craniotomy to remove a high-grade II infiltrating astrocytoma from my right temporal lobe. In the nearly 9 years since, we’ve welcomed our third child in the face of cancer. I’ve kept an ongoing blog about our experiences, and have worked as a patient advocate.

As I began photographing Josh and Jenna, it was critical for me to blend into the background to observe. This has been an emotionally charged journey to document from day one, and it has been deeply personal. Woven throughout the images are moments and memories that mirror some of my own experiences. It has been a challenge to maintain an emotional distance, yet I believe that my own experiences have afforded me a deeper understanding and greater perspective in capturing this story through my lens.

Inevitably, we became emotionally close. I am not sure you can so intimately follow and document someone’s life — and ultimately his death — and not be changed. I have grieved as deeply as I have grown.

I faced tremendous technical complexities in shooting this project. First of all, I had zero control over lighting, where people stood, how they interacted, or how much space I had to work in. In some rooms I was confined to a corner and had to shoot at ISO 16,000 because there was so little light. While looking through the lens trying to get an angle for a shot in the operating room, I had to constantly be aware of sterile fields around me and not touch the surgeons or cross invisible boundaries.

With few exceptions, I’d never before laid eyes on the location I was shooting in, and the situations were emotionally charged. Imagine this scenario: a small conference room with a lamp on a side table, harsh overhead lighting, and Josh and Jenna seated at a small round conference table with a radiation oncologist. My movements had to be intentional yet minimal — I could not be a distraction. I was constantly fixed on their faces, trying not to concentrate on the conversation, but taking in enough to anticipate reactions. Magnify this by the fact that Josh and Jenna were hearing devastating news about his life expectancy. There is no do over.

Throughout the project, there was a duality of emotions, and it’s there in the images. The joy of the birth of Reilly, for instance, is juxtaposed with the sadness of Josh in bed in the delivery room — simultaneous exhilaration and heartbreak. For me, there was another duality. As a photographer, the challenge of the environments and circumstances in which I was shooting was exciting. But as a cancer patient, I was struggling with reliving my own experiences. To this day they remain raw in my heart and soul.

I was often haunted by the thought that what I was documenting could be my journey as well. While the growth of my tumor has been stable, the possibility of its aggressive return ever looms on the horizon. It’s often been a lonely journey, and in the midst of life’s usual chaos, it has taken its toll. Normal life happens in the weeks between my 12-week MRI and oncologist appointments, and I maintain a humbling knowledge of how quickly my status could change. We’ve shuffled, adjusted, accommodated, taken risks, and faked it, and fearlessly lived our lives. YOLO — you only live once — is our mantra, and regret is rarely an acceptable as an option.

Photographing the day Josh passed away was the most difficult thing I have ever done. It was impossible to separate my emotions from my job. Tears streamed down my face as I worked. My hands shook and my nose ran, but my brain was laser-focused on capturing every movement and anticipating the next. I forced myself to push down the magnitude of my grief to a place where I could function as a photographer. I did not stop to process what I was feeling in the moment. Every image captured was painfully personal to Jenna and all those others who loved Josh. I knew they would resonate deeply with viewers and, one day, with Reilly. Documenting with dignity was foremost.

These images portray the reality of cancer. As difficult as it was to photograph, failing to would have been an injustice to the project. For 20 months I carried the immense responsibility of not only giving wings to Josh and Jenna’s story, but of doing so transparently, honestly and with respect. Now, 8 months after the shutter closed on the last image, I am still coming to terms with the emotions I had set aside for nearly 2 years, but my healing has begun.

Witnessing and documenting the human experience has been extraordinary and has shaped and changed me. I set out with a passion and a purpose to create a body of work that means something, one that would give the cancer community a voice, and impact and alter how brain cancer is viewed, funded and researched. I hope it begins a larger conversation.

This article first appeared in the May/June 2017 issue of Click Magazine. Order a digital copy from the Click & Company Store or a 1-year print subscription.