The Not Knowing

Not knowing when the dawn will come I open every door. Emily Dickinson

You might think that the worst moments during Jimmy’s eight-year brain cancer journey came when the doctor had to deliver bad news. “Your son has a tumor the size of a golf ball in the back of his head.” “There something new on the scan.” “It’s metastasized into his spine.” “The cancer is everywhere.” These moments were devastating. They confirmed our worst fears, destroying our hopes that the headaches were just headaches, that the treatment was working, that Jimmy was cancer free.

But the nadir came later, in the middle of the night, when I was the only one still awake. I’d absorbed the initial blow. I’d done my best to reassure Jimmy and Dan that we would find a path, a different treatment, something else to try. I’d worked hard to convince myself. But there in the quiet, hours from dawn, all I could think about was everything I didn’t know – how to evaluate potential clinical trials, where to get more second opinions, how to help Jimmy stay at Stanford if the side effects became too challenging for him handle on his own.

Not once during those sleepless nights did it occur to me that I wasn’t supposed to know. But how could I? I was a political science major who’d avoided taking anything more than the mandated basic science classes. I wasn’t a pediatric neuro-oncologist. Until Jimmy, I’d never cared for someone with cancer or any other life-threatening illness. Yet these thoughts never even occurred to me. I assumed that other mothers in my situation would know, and that the failure was all mine.

There is so much we don’t know, yet we are so hard on ourselves for not knowing, even in situations we couldn’t possibly fully understand until we are in them. A new marriage, a first child, a big promotion at work. We dive in, expecting to be competent from the outset, only to discover just how challenging and complicated partnering, parenting and leading can be.

I’ve never been good about asking for help or advice. I’d much rather figure it out on my own than admit to a gap in my knowledge or experience. I’m rarely good at something the first time I try it, despite my high expectations. I know intellectually that we learn best by failing or making mistakes, but I still hate the feeling when I do. I beat myself up when I fall short, even as I stand outside of myself watching my own insecurity ruin the opportunity to learn something new or enjoy the process of becoming more proficient.

We begin this life full of wonder. We ask questions to understand what we haven’t yet experienced and worry not at all about our struggles to learn how to crawl, to walk, to speak, to attempt something new. But at some point, most of us get the message, either from our parents or the world at large, that we should know more than we do. That a lack of knowledge is unacceptable and no excuse for failing, and the goal shifts from learning to finding an answer and fast.

We learn so much from curiosity. With every one of those scary times with Jimmy, we found the path by asking questions. What treatments are available? Why does it have to be recurrence on the scan? Couldn’t it be something else? Who else should we talk to? Each question didn’t just lead to more information. Some exposed the assumptions and gaps in logic that even the best doctors were guilty of. The bright white tissue on the scan that turned out to be treatment-related (temporary) damage, not fast growing tumor. The second opinion doctor with the low dose chemo option that held Jimmy’s cancer at bay for years. It wasn’t certainty that led me or Jimmy’s medical team to the answers, it was admitting all that we didn’t yet know.

“I don’t know” is an invitation to learn. An opportunity to find out instead of make assumptions. A hall pass to make mistakes. A chance for other people to lean in and help. When we act as if we already know, we miss the magic and beauty of figuring it out as we go and learning something that wouldn’t be possible if we had all of the answers from the start.

On those grim days when Jimmy’s cancer returned or spread, the news was always a bitter blow, and the hours that followed were terrible and terrifying. I beat myself up every time for not knowing what to do. But as the days went on, I could see the fuzzy outline of the answer on the horizon, even if I couldn’t yet make out the details. Each time, the path was there, waiting patiently for me to sit in the not knowing long enough to find it.

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