End-of-Life Photography // Fly On The Wall

End-of-life photography became interesting to me early on. Death is a part of life, yet it remains one of the most taboo topics in our society. I’ve always been intrigued by death, and through the art of photojournalism, I’ve explored and understood the many aspects of death: from the grieving process to the cultural traditions and rituals surrounding death to various forms of interment.

When I learned that our midwife, Ray Spooner, who helped me birth my firstborn child, Ellis, was diagnosed with ALS, I started following his story via social media. 

He led with: “I ain’t fucking dead yet.” 

Ray’s post about his diagnosis spoke volumes to me: about how I envisioned approaching my death, and the idea of my own mortality. I would be frank with myself and others; I’d get honest with those I love about what’s coming. Then, inside this death-phobic culture, I’d gather the mental strength with an eye on my inescapable outcome and hope for as good an ending as humanly possible. 

Indeed, death comes for us all. I want to embrace it before it arrives.

I firmly believe that one shouldn’t ignore their impending future while being aware that all we have is the present. I learned of an amicus mortis, better known now as a death friend. It is someone who shares with you the bitter truth and stays by your side to the end and beyond.

Immediately, I knew I wanted to be in that role for somebody through the way I best know how: through the lens of my camera. 

The big question was, who? 

Of course, there are potential ethical concerns surrounding death photography, such as respecting the privacy and dignity of the deceased and their loved ones. I spoke with a handful of funeral home directors and hospice nurses, and everyone was weary about how a family might be reluctant to sign off on such an endeavor. 

With the right approach and sensitivity, however, photojournalism can be a powerful and meaningful way to explore and understand the many facets of death.

I made a generic inquiry online about how I wanted to find someone who would sign off on post-mortem documentation. Where does one find someone who wants to participate in end-of-life photojournalism? Silence and tilted heads. I called funeral homes. Mostly words of encouragement, but the process is highly illegal on their end and difficult for families to swallow, even with a contract from the dying.

Ray Spooner’s impending death existed in a different arena for me. Men who’ve delivered thousands of children literally deserve some kind of acknowledgment, a different sort of praise. 

So, on February 7, 2016, Ray’s openness to this circle of life came to mind, and I quickly sat down to write him the following:

FEB 7TH, 1:56PM 

Hi Ray, Hope your Sunday is treating you well … as well as can be. I have quite an intimate request to present to you. For some reason, even though we’ve only met a few couple times, and you helped bring my son into this world, and we’ve watched your current journey unfold from afar, I feel as though I can ask you this without being judged or feeling like I am imposing on something quite personal. Even if you don’t consent to do this with me, I hope you understand where I’m coming from and how I’m looking to document something more intimate than I can ever know.

With all that said, and without maybe being able to find the most appropriate words for what I’m about to ask, I was wondering if you would be willing, along with your family, to let me photographically document one moment of your every day through the very end. We don’t hold our bodies as sacred as our family does. But ultimately, I am looking for someone to embark on the photographic process of one’s mortality. Now I know “he ain’t fucking dead yet,” which compels me to present this to you. I’ve also been looking for someone to sign off on post-mortem photos … but ultimately, it’s a strange and seemingly unattainable thing to ask of many people I know.

So here I am, boldly taking a risk and asking how you would feel about such a project. And I would love to talk to you more if you are interested. I hope you know I fully respect your life, journey, and ability to persevere through all the bullshit. Perhaps this is why I can be frank and even put this on your proverbial table. I am not quite sure how to end such a message as this. I felt it should have happened in person, but I just needed to get this out there before I chickened out of mentioning any of this to you. With all that said, thank you for everything you have done and continue to do and for showing me that life doesn’t stop until you let it.

Ray’s response was fast.

FEB 7TH, 3:04PM 

If you knew me and my infatuation with pictures you’d know i don’t find this an odd request in the slightest. It was amusing that you danced around it in your message. Tell me more about yourself and your work. That you’re a bleeding heart liberal, that you even know who the Cocteau Twins are, and that Bowie’s Life On Mars? is my second fave song of all time are so far in your favor.

…and so it began.

end of life photography

I met with the family shortly after that to explain what this process might look like and what my intentions were. They gave me a brief history: in December 2014, he was diagnosed, and they weren’t sure exactly how much time he had left. One year and eight months later, he would be gone.

I proposed what I wanted to do, and they accepted. I had six months with him.

At its core, photojournalism is about capturing the truth of a moment and telling a story through images. In the case of death photography, this means capturing the emotions, traditions, and rituals surrounding death in a respectful and informative way. 

Ray’s profession as a midwife and extraordinary care ability elevated him. His awareness. It was his tone—the timbre in his voice. Many women who had Ray by their side to deliver their children described his tone similarly. His voice. It was… soothing. 

That he lost that ability to work, in and of itself, was tragic. That he could no longer communicate was even more painful altogether. But, he wrote in his blog often and shared my images as he saw fit.

One of the benefits of photojournalism in death photography is how it can help us visually understand and process our own emotions around death and mortality. Seeing images of others grieving can help us feel less alone and more connected to the more significant human experience.

Photojournalism can also help preserve cultural traditions and rituals surrounding death, which can be especially important in a society where many traditions have disappeared. We can help keep these traditions alive for future generations by documenting them through images.

Furthermore, end-of-life photography can be a powerful tool for raising awareness and creating change around issues related to death and dying. By shining a light on topics such as end-of-life care, hospice, and grief support, photojournalism can help create a more informed and compassionate society. 

In Ray’s case, it was exposing the painful truth about living with ALS. But in some ways, it made his death all the more beautiful. 

The images here are both painful and beautiful. They are not easy. Rather, they are complex. They define the inexplicable. 

I did not feel like an intruder during this process. I became an essential part of Ray’s life by sharing the photos I took daily. From helping us process our emotions around death to preserving cultural traditions and raising awareness around important issues, photojournalism can be a powerful tool for creating understanding and compassion around our universal human experience. My experience in this realm was life-changing.

These photographs are published with his family’s permission. They are theirs. These were his. They are now all of ours.

Chicago candid wedding and lifestyle photographer

Chicago Illinois based + Brooklyn NY bound