You know those awkward icebreaker games, when everyone goes around and answers something like, "What's your favorite superpower?" When I was a kid, I loved those games. I believed I had the perfect answer. People would start sharing and I would wait, bouncing in my seat with excitement. And when it was my turn, I would proudly tell everyone, "The superpower I want most of all is to see people's emotions in color, hovering in the air around them." Wouldn't it be cool if you could see how happy a friend was to see you, like they'd walk in and it would just fill with the color yellow. Or you could tell when a stranger needed help. You'd pass them on the street and you'd see this long trail of blue behind them. This was usually the moment where I would look around at the many blank faces telling me yet again, my cool superpower, it hadn't landed well with my fellow fourth graders.
I was an awkward child. That hasn't really changed. And neither has my deep appreciation for the emotional world around me or my desire to both witness and capture the elusiveness of feelings. As I grew older, I started paying attention to the people and the stories I came across and I wrote down what I saw. When writing didn't feel like enough, I learned photography and I began documenting the moments that felt most precious to me. With a camera in hand, I learned the art of deciding what to include in the frame and what to let blur into the background. I graduated high school. I went to college. I studied a combination of psychology and art. No shortage of feelings there, I can assure you.
And then ... I got sick. Not in a dramatic way. I didn't start screaming in agony or wake up unable to move or suddenly forget how to speak. Eventually, all those things would happen to some degree, but my path from wellness to illness was a slow, persistent movement towards deep sickness. I spent three years trying to identify the cause. I met with numerous doctors and the answer was always the same. There was nothing wrong with me. Over and over. Despite my persistent low-grade fever and joint pain and muscle aches, I was told, "Go see a therapist, practice more self-care." I started to believe they were right. Maybe nothing was wrong. Every test that came back normal had me falling further into a hole of self-doubt.
I started grad school hoping that I would somehow get over this mysterious illness and I could return to life as it was before. Still there was a small, unwavering part of me that knew. Despite my symptoms not lining up with anything that made sense, I knew something was wrong. Eventually my cognitive symptoms worsened. Brain fog and memory loss and word-finding, and a doctor agreed to order an MRI. Assuring me they didn't think they'd find anything concerning. Instead ... they found a golf ball-sized mass in my right parietal lobe. And just like that, everything changed. I called my parents and I scheduled a date for brain surgery, and I dropped out of my grad program. They told me the tumor is probably benign and with its removal that I'd likely make a full recovery.
I wish with all of my heart I could tell you they were right. I wish the story ended here. Six days after surgery, the pathology report came back telling us the tumor was not benign. It was something called an anaplastic astrocytoma and while the surgery had been successful and the tumor was gone, the microscopic cancerous cells it left behind remained, impossible to remove. In other words, I was officially diagnosed with a rare, aggressive, incurable brain cancer. Not my best day.
My cancer is treatable, but it's highly recurrent. And when it does recur, it tends to return as terminal. The timeline of when, it's unpredictable. Some people get 15 years. Some people just get one. My doctors explained to me that while chemo and radiation would reduce the likelihood of recurrence, every three months for the rest of my life, I would need to return to the hospital to check for new tumor growth.
As I listened, I met real grief for the first time. I thought of that superpower I'd once wanted and I imagined a deep dark purple filling the room around us. A cloak of color that I knew was going to stay with me. I'm 27. I thought to myself, how can this be happening? I was as determined as I was devastated. I wanted to fight and recover and I wanted as many years of life as possible. As I once again began to regain my strength, I started to pay attention to the people and the stories around me. In the hospital, I would push my walker down the hallway and I would steal glances into the rooms I'd passed and I would see these tiny worlds contained within them. Sometimes I could feel joy so big, I just wanted to stop and stand in it. Other times, the despair and the sadness made me want to run.
About three months after I left the hospital I found out about an organization that offers free photo sessions to critically ill children and their families. Right away I called them. I set up a meeting and I signed up to volunteer. Despite my radiation-induced fatigue and my persistent grief, the idea of giving back in that way, it lit a spark within me that had been recently extinguished. For the first time in a while, I felt hope. It was as if a thin strand of gold had begun to weave its way through my coat of grief. And the color was blending slowly into something new.
This organization offers their services to children at any stage of serious illness. And often they are joy-filled and they're celebratory. Other times a family asks for a photographer to document a child at the end of their life. Sometimes these are the only professional photos a family will ever have of their child. Often they're the last ones ever taken.
The first call I got was for an end-of-life session for a three-year-old girl who'd been very sick for a long time. "She might pass while you're there," they warned me. "Are you sure you're up for it?" "Yes," I told them, completely unsure if I was. Now, I could tell you about this little girl's death, which happened a few days after I photographed her. I could, but I'm not going to. Instead, I want to show you the little girl's mother. How she kissed and stroked the hair of her daughter as she lay in that too big hospital bed. Even as the world as she knew it ended forever, she was there to give love to her daughter. I want you to see the dying girl's older brother. How he cried, but also how he took his yellow airplane and he flew it above her head. How I saw then a gesture of hope, colorful emotion, orange and gold. I want to bring you with me into the rooms where the mothers hold their babies and the families say goodbye. And I want to offer you the chance to see in frames, to choose the point of focus and blur the background, to see the details we so often miss, the moments of grace and beauty we assume don't exist in those desperate places. In the hardest moments imaginable, those families, they choose to love, despite and because of it all. I was not raised in religion and yet I can tell you, whatever you believe, those rooms are holy ground.
When I was first diagnosed, I was certain grief would swallow me whole and some days I still think it might. I will never be at peace with the fact I might not get to be a mother. That I might not see my brothers get married, that I probably won't become old, like really old, the kind of old everyone else dreads and tries to fight against. I would've made a great old person. My grief -- it's big. My fear of dying, of leaving behind the people I love. It's enormous. And my work photographing death has not erased that. Death itself is rarely beautiful and the images I capture reflect that too. The grief I have seen, the immensity of the loss -- it's brutal.
But when I walk into those rooms with that camera, my job is to do what I always wanted to do as a child. To capture the feeling and the connection and the emotion right there in front of me. And what I've learned from all these families and from my own wild terrain of grief is if I pay close enough attention, I don't need to see emotion in color after all. It's there and it's visible in the details. In the way our communities love each other through anything and everything. And with my camera, I can capture the evidence of that forever, and I can give it back to them to keep.
Right now, my cancer is stable. I am so glad that for now, I get to keep living. Because that's the other side. My fear of dying, the pain of loss, it's only as strong as how much I love this life and the people in it with me. None of us are ever ready to say goodbye to the ones we love. Loss is devastating and try as we might, we can't avoid that shattering grief that follows in its wake. My guess is no matter who you are or what you've experienced so far, you already knew this. You too have grieved and all of us will grieve again. And when that happens, we will have a right to be angry. We can mourn as loudly as we want, and we should.
But when the worst happens, we have a choice. You don't have to stay deep in the dark bitterness of loss and let that be the only thing that we see or feel. Because the one thing that's as strong and as powerful as our grief is our love for those who we have lost. And that love will remain like thousands of bright, colorful strands, woven forever through our cloak of grief, beautiful and awful, side by side, and ours to keep.
Thank you.
