The last time I saw her, she was pedaling away from me on her way to her best friend's house. I watched her thin legs and frail knees and ankles propel her forward on her bicycle. The wind she created with her speed would have blown back her hair had it been long enough. She looked like she felt free.
Two years earlier, she had hair down to her waist. She shaved it to prepare for her first surgery. After six rounds of chemotherapy, she had another surgery. Then eight rounds of chemotherapy. Then another surgery. More treatment.
The last time I saw her, her hair was maybe two inches long. It wanted to make waves over her head and didn't quite have enough length. Instead it wiggled and stood awkwardly at attention. She was so happy to have it, and it was beautiful.
She was overjoyed to be home from the hospital. Six months prior, she and her family traveled to a cancer treatment facility 1,300 miles away for a three-month experimental treatment. It looked promising.
The cancer returned. For nearly three years she had lived the life of a cancer patient with its grueling schedule of injected poisons and evaluations. She found beauty and joy every day.
Her parents told me repeatedly that her refusal to live anything other than a full life was one of the most difficult aspects of her journey. They were heartbroken to know their daughter was living with immense pain - headaches, joint pain, jumbled thoughts, digestive distress. They were elated to see her embrace as much of the carefree life of a 10-year-old as was possible and simultaneously crushed to know that kind of freedom in childhood would not be hers.
She made it herself. She took it. She owned it.
The last time I saw her was her last day. She visited with her best friend for a few hours. She rode her bike home and enjoyed dinner with her family. She played her favorite board game, Monopoly, with her sisters and parents, while her cat sat on her lap.
She went to bed. Her parents kissed her goodnight.
More than 300 people attended her memorial. It was a moving service with stories from her teachers, friends, and family. They hugged and wiped away tears. They stared at their shoes. They talked about how much she would have enjoyed riding her bike on that day, which was unusually dry and warm for February. They looked at the pictures of her on display and replayed the moments in their lives they were fortunate enough to share with her.
I saw all these things, and photographed all these moments. I captured the confusing emotions people struggled to find ways to express. I made art of their love.
This family invited me to be a part of their journey shortly after her diagnosis. I was a part of their "after." I attended family events and celebrations. I was there for school plays. I came to doctor's appointments and visited during treatment. I saw her last bike ride. I photographed that, not knowing it was her last day.
It's been two months since her death. Her mother called me this week and asked me to visit. She and her husband were ready to look through her final photographs - from her last day, funeral, and cremation.
I wish I could find a way to describe how it feels to sit with parents in this way. I wish I could find a way to describe how much it means to be to be invited. I wish I could find a way to relieve the smallest bit of suffering. I wish I had a number to count the tears that fall.
I wish this place didn't exist, and yet I can't imagine myself anywhere else. I know from the backbreaking hugs I received that I am in the right place. I know from the clammy pressure on my hand that my view of their lives means something to them.
I wish I didn't know, and yet I am grateful I do.
This week the subject of work came up while I chatted with a friend. We traded a few stories about the things we loved about what we do and then she became uncharacteristically quiet.
"Your job must be really hard," she whispered. "Why? How can you do this?"
These questions happen in nearly every conversation about what I do. Death is culturally taboo for most Americans. It feels weird and perhaps naughty to talk about it.
It's difficult to explain without many long stories, so I'll give you the abridged version. Adversity calls me. Mortality practically has a finger in each of my nostrils and leads me around. I am compelled to do this. It's hard. Some days I feel like I just can't . . . it's too much.
Then I show up and see the people who are living with this new reality. It doesn't matter if it's illness, death, or a significant change in capability . . . it requires the creation of a new normal. For these families, life is forever changed.
Whatever I experience as the companion during these times I can manage. I know that because I need to do this for these families. This intimacy with mortality, whether it's sudden or gradual, is a state that leads to the need to reflect and connect. Through photography I can give these families a little of both.
Death comes for each of us. It comes to us all. In avoiding the topic or seeking endless euphemisms we cheat ourselves the opportunity to really get to know mortality. It doesn't make sense to deny it. How much better would the end of life be for someone who was not afraid? If we could learn to make peace with that sooner in our lives, I believe it would change not only how we prepare for the deaths of our loved ones and ourselves, but how we live.
Documenting someone's last breaths is an incredible honor (and a tremendous amount of pressure). Observing the customs and tradition of many cultures in caring for their sick, dying, and dead and in celebrating and mourning their losses is eye-opening. I've experienced so many amazing things of which I was previously ignorant.
With mortality a part of my daily life, I connect more closely with how I want to live my life. Being with death strengthens my resolve to live. When my body is no longer able to support my adventures here, I will go. Until then, I am living. I know death will come, and when it does I expect it will be much like old friends reuniting.
I see a lot of incredible moments of the human experience while being with families in love and grief. From each family I learn, and those lessons and points to ponder are what I wish to share with you here.