Justine Bursoni is a freelance photographer based in the Midwest. She lives and works in Illinois. Her photography is based on her love for the human experience. Investigating and experiencing death through the lens is an ongoing project that she...
I learned that an "amicus mortis" — a death friend — is one who doesn't hide the bitter truth and stays by your side until the inescapable end. I consider this a way of finding control in one of life's uncontrollable transitions. A good death. It is what all of us should hope to encounter. I sought to bear witness to others who wanted the same for themselves.
Ray Spooner is a person I know. He was diagnosed with ALS in 2015. He also happened to be the midwife present at my son's birth. I inquired if he would be willing to let me capture moments of his everyday life as his journey unfolds through internment, and ultimately, allow me to document his remaining mortality and the final hours after his imminent passing.
After my inquiry, we met to discuss what this project might look like. When I entered his home, I quickly learned that Ray had been documenting his family's life through photography from the very beginning and now without use of his hands to do it himself, it became an interesting inquiry for him to consider.
I have found in Ray a friend, and through that, a personal photo project that has quickly developed into something further than I ever imagined: a relationship that will shape me for the rest of my life and one that will help to complete his own. Ray and his wife, who is also a doula, Rae, and their family fully embraced the intriguing proposition. This is how one lives intimately with active death. Ray was in hospice care for a limited time. He could no longer speak, and had even less mobility since when we first met. The good death carried on . . . until he decided himself to put an end to his impending end.