I first met Elizabeth Silver through her incredible novel The Execution of Noa. P. Singleton. I sought her out and we became friends, and she sent me her new memoir and I was both exhilarated and on edge and terrified whether medicine would figure out what was wrong with her new baby and enthralled and fascinated reading it. The memoir is astonishing, about life and uncertainty and waiting and it is profound and out today. Go get it.
And thank you Elizabeth for being here, for your amazing work, and for being my friend.
Was it terrifying or cathartic to relive what you went through?
Writing this book was at once painful and cathartic, but by pulling the curtain back on the general concept of uncertainty in medicine, it helped me contextualize what was happening by extending the narrative far beyond my story to those of countless others.
I interviewed dozens of experts and individuals experiencing medical uncertainty, and though only a handful of their stories made it into the book, our discussions will stay with me forever. Many faced long-term, ongoing uncertainty, which invariably turned their chronic uncertainty into the only known variable, while others shifted my perspective on what uncertainty is, what a medical crisis is, and helped me understand where I fall in the spectrum.
While conducting interviews, I realized that uncertainty in medicine is, in many ways, a litmus test for how people view the world. I ended each interview with a fast association test for the gut reaction to the phrase, “medical uncertainty.” The most frequent response was “fear,” with “powerlessness” and “frustration” a close second, all words sharing a particular connotation. Sure, there were a handful of responses in the positive realm, such as “challenge” and “discovery,” but broadly speaking, it was a concept that left people needing something; something comforting, something healing, something…more.
How difficult was this to write? Did you have moments when you just had to stop writing, or you ached to fictionalize things?
Though I loved and hated writing this book, I never wanted to fictionalize things. I would have taken what I was learning and perhaps made meaning of it through fiction if that was the case. I had an intense need to capture my life and a particular truth about it at that time that I definitely did not want to fictionalize. Of course, all of writing is perspective, but I needed to write this book in order to live past the times in it. I needed to write this book in order to get back to fiction, which is what I’m writing again now.
There's a great deal of fascinating medical research in the book which reminds us that we--and doctors--don't know everything. Maybe we don't know anything. How best can we live with this idea?
In many ways, I think medicine is like travel. The more you travel, the more you realize you haven’t traveled enough. The same is true with medicine. The more we know, the more we realize we don’t know. We can live with this idea by accepting that if even the scientists – the people who are trained to view the world with a clear and often provable hypothesis – must accept uncertainty as part of life, then we also must accept it. There are elements of our life we can control – so let’s focus on those in whatever way we can find it. Maybe you focus on the moving variable through religion, through creativity, through another form of control, while you somehow allow the constant variable – the unknown in medicine – to be present. It will always be there.
There's so much about time here, too, that it can soothe, release stress, show us the truth. But time can also really wear you down, make it impossible to believe that there will ever be a happy ending. How did you deal with time while you were struggling to understand what had happened to your baby?
In many ways, time stopped for me. I was a brand new mother still recovering from a Cesarean, trying to learn how to breastfeed, while navigating doctors, scans, physical therapists and the projections of others. But this wasn’t anything exceptional or new. This happens every day for women and is all the more pronounced in NICUs, where the stakes are higher. I think time stops, soothes, and evolves during these heightened moments of anticipation – be it the joy of new parenthood or the fear of losing that new identity.
During the endless waiting, I consumed memoirs and french fries on an almost daily basis. I ate and I read, I read and I ate. I pumped breast milk round the clock because it was really my only semblance of control, the only thing I felt I could do to help.
This exquisite memoir is both terrifying and fascinating and in a way, exhilarating, because it gets at the beating heart of life. The way we cannot know what is going to happen in the next second. The way we must wait to see what can be revealed, or if it will be revealed. Can you talk about this please?
Thank you. I hope it is a representation of life – only under this particular set of circumstances. The book is divided into three parts: Acute Uncertainty, Sub-acute Uncertainty, and Chronic Uncertainty, taken from the three stages of illness in medicine. I found that if you apply your own uncertain medical crises to this rubric, in many ways it helps in this process of waiting to see what will be revealed. There will always be the initial moment of discovery, the rush to the hospital, the acute pain, followed by a waiting point or learning period as doctors and patients work together to find a diagnosis, prognosis, or treatment plan. Ultimately, there will be the chronic uncertainty that is simply life. If you never find answers, then the certain, ongoing variable is uncertainty and there is some comfort in that.
What question didn’t I ask that I should have?
These questions were amazing! Thank you so much for having me on your blog.
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