06 December 2018

Just Put It in a Box!


I drew a box on my iPad. Because it did not look like a box, I wrote its name next to it: “Box.” I created the box to open it when I want and close it when I want. This became a conceptual tool, although it is odd to say the box is a tool in my toolbox. This makes it a box in a box.

I woke up the next day and decided to use my box. I gently wrapped my sadness and left it at the bottom. Then I locked it. “This morning, I am a doctor! My focus is on taking care of my patients. I will take care of my sadness another time.” But then the first person who saw me asked, “How are you doing? Are you OK?”

I was disappointed.

My box was not locked enough to keep my feelings from others’ curiosity. Sometimes, we wish no one would ask us how we feel. We make a choice to hide our feelings, lock them in a safe place, and carry on. But people want to know. Some people are nosy. Many truly care. And others just think it’s what they should say. I wish I could tell them apart.

Cancer patients are sometimes expected to still be “regular” people. This means having boundaries for emotions and selecting what to show and what to hide—it means having and using that box.

I was never that good at hiding feelings or thoughts, but I have learned to refine the representation of myself by, when I can, choosing the feelings or thoughts I want to deal with or express at the moment. But the kinds of emotions I deal with as a person with cancer are not your daily emotions as described in the movie Inside Out: joy, sadness, fear, anger, and disgust.

With cancer, the emotional experience is qualitatively different. When I learned that I had a driver mutation, which means I had the possibility of going on living rather than potentially dying in 4 to 10 months, I felt something I had never experienced before. I cried because I was given life again. When my doctor had said, “It is cancer,” I’d had no emotions to experience, and I remember asking myself what I should be feeling. The default was to cry, so I did. The nights when loneliness takes over feel as if I am being swallowed by darkness. And the words we use to describe being tired do not begin to capture the overwhelmed feeling from these thoughts and feelings.

Cancer patients experience the dark, the ugly, death, fear, loneliness, exhaustion, dread, loss, anguish, and despair—a vast range of states of mind and emotions. They are the experiences of cancer—its pain, loneliness, and trauma to the soul. It is understanding that many of us strive for, to understand ourselves and to be understood, to simply hear someone say, I hear you, and I genuinely understand.

So shoving those emotions in that box has not worked for me. Understanding my experience, finding words to share with others, speaking and being heard and understood, on the other hand, have.

That is exactly why I am writing. I am writing to understand. I am writing to reflect and to have dialogues. It’s not an entirely selfish act. Others can find, in the world of the person with cancer, a space for dialogue and reflection. Dialogue and reflection are a way of being. People can find meaning in each other’s experiences.

The conversation with the person who has cancer can maybe open a space for understanding. It can be awkward at first, but it gets better, trust me.