In The Opposite of Certainty: Fear, Faith and Life in Between debut author Janine Urbaniak Reid shows how we can deal with the seemingly impossible.
This gripping memoir about what it means to face uncertainty details the plans Janine had for her family and her life that were gutted by her then 10-year-old son Mason’s diagnosis of a cancerous brain tumor, only to be followed by her own cancer diagnosis.
Truth comes from admitting this is a life I have and it’s right now. It’s so simple. So part of that uncertainty forces us to go deeper and look at what we really believe in. That’s how we grow in a crisis.
–Janine Urbaniak Reid
Struck by the honesty, humility and hopefulness of her memoir, I spoke with Janine about her unvarnished look at getting a handle on life’s uncertainties, something we can all relate to…
EYE: The Opposite of Certainty was one of the most personal books that I have read in a long time. Why was that your approach?
JANINE: I really did feel like the experience of dealing with what can be fatal diseases would speak to other people. The more I delved into my story, the more I realized this is the human experience.
This situation isn’t unique to people with brain tumors or the pediatric cancers that my son is confronting. And then I had my own breast cancer diagnosis. It was a low-grade cancer. Just when I thought I had my feet under me, it was like, what the heck?
How do I end up with more faith at the end of this journey when everything that I thought I knew about God and the universe has been tweaked and turned inside out. Now all platitudes are were gone.
EYE: It must have been difficult to relive these difficult medical situations while writing this book.
JANINE: Yes, it was absolutely, really difficult. Initially, I had an editor who gave me feedback by asking, ”How are you feeling? How were you feeling? What was going on in you?” It was like cutting into layers of the earth.
You know, here’s the tip of the grass and then let’s get down into the topsoil and then let’s get down into the deeper layers of rock. Then it was the stark realization that this just happened to me.
After I got that feedback, I thought, “Well, OK, what would a mother feel in this circumstance?” I realized, wait a minute. The point is not to guess. The point is what did I feel?
EYE: So out of that came the insights you knew you wanted to share?
JANINE: My traumatic childhood story came into it, too, because what I felt a lot of times was numb in the midst of trauma.
Every layer I came through, then the grief I felt and the sadness for my son missing the life that we all wanted for him, was very difficult. In a lot of ways it was very deep and rewarding. So grief had to come through.
I do want to mention that in delving into all of these things there was joy, which was like, whoa, wait. And how the heck does that happen? I got to see that for one thing, I’m not diminishing and neither is my son.
Life literally took body parts and chunks of his brain, not like big chunks, but little chunks. No chunks would be good. And yet we’re not diminished.
EYE: You describe your situation as one of extreme uncertainty. How do you grow from that?
JANINE: You have to let go of everything that’s not really true. During the beginning of Mason’s 13 years of hospitalizations, I decided I was going to gird myself so that I could get back to my former life, a life I recognized, when this crisis is over. That was not real.
We have to let go of the bull because it’s just too heavy. It’s a lot of grace, too. I also get to stop pretending to be anything other than me with my messy family room.
EYE: By your title The Opposite of Certainty, do you now consider certainty an obstacle in dealing with life’s ups and downs?
JANINE: Yes. I write a lot about being such a good girl; I was going to do everything right. There had been a lot of abuse in my childhood, not necessarily from my parents, but from an extended family member.
And my job was to not let my children hurt. I had really quested for spiritual comfort by praying every day as my world turned upside down with Mason’s situation. The uncertainty, fears and doubts that I even had faith were magnified.
I had to go deeper. I found the fears and doubts were part of my faith. My faith was in the muscle of the experience of getting up and sitting by that bedside in the ICU days on end with Mason, uncertain of what to expect next.
The title of my book does come from this wonderful Paul Tillich quote: “Doubt is not the opposite of faith. That is one element of faith.”
EYE: Has the acceptance of uncertainty made a difference for you?
JANINE: I still do it every day kicking and screaming to a certain extent, some days more than others. All three of my adult children are currently living with us. Mason has not been doing well. We’re in a tough time. So our focus has been on his pain, dealing with his doctors and we’re quarantined right at this moment.
Then, my husband got a positive COVID test and I was like, are you kidding me, universe? I love this line which I’ve been saying a lot lately. And still… the uncertainty is there.
So I can feel a lot better in those uncertain places if I’m not alone. But it takes courage. A lot of it, too, is telling the truth. And that is I’m really afraid sometimes. I don’t know how I’ll have the strength to deal with what’s next with Mason.
The ground is very unstable and yet I know that somehow I get the strength I need the moment I need it. I do believe that I don’t have it yet for tomorrow or even later this afternoon. But I do believe that it will be there, which is a lot. That’s the transformation that happened for me.
Janine’s Zoom chat with her friend Anne Lamott at Book Passage
EYE: What is the one take away you hope readers get?
JANINE: I hope they recognize that anyone can tap a source of strength inside themselves and it doesn’t matter what they call it, right? That it is possible to walk through the impossible.
I’m a very regular person. How do you walk through the impossible? Tell the truth so you don’t have to be a superhero.
Often my being really courageous in a situation is admitting I am terrified. I don’t know how I’m going to get through this day, but I’m going to show up and do the next right thing because you know what? I love this person.
EYE: With your situation being as intense and at points dire, what advice do you have for the “right thing to say”?
JANINE: It’s very tricky because there are times where you’re literally taking care of the person who’s offering support because they’re coming at you with their oh, I just need you to know how bad I feel. And I’ve been crying all the time.
Yet I can’t take their feelings on right then. I have gotten better at having boundaries saying, “You know what, it’s not helpful for me to talk about that right now.”
People can be helpful by being brave enough to sit with others in their scary, unknown space without trying to fix it. Send a supportive text. Maybe go for a walk with a friend. When it’s bad, it’s OK.
There are no right words that will fix it when there’s a real trauma or a real tragedy. But your love is enough.
EYE: How have you helped Mason deal with the uncertainty of what he’s going through?
JANINE: For all that I say about don’t try to cheer someone up, you’re not going to fix it, that has to be the hardest thing with your own child. I just want to say, “It’s OK. It’s going to be OK.”
So I try to sit with him in those unknown places. We watch a lot of funny TV. We’ve seen every Seinfeld about 100 times. I try to sit there, and it’s the hardest thing I do – to watch his pain.
EYE: What helps you deal with that unknown or the fear of it?
JANINE: The answer is right in this moment. So I’ve been forced kicking and screaming to learn how to do “this moment.”
Today I’m a little bit freaked out that I might have coronavirus, although I seem to be getting through it OK, and I’m not that sick. Somebody said to me at one point, “ Be where your feet are.”
Where are my feet and am I OK in this moment? Oftentimes the answer is yes. If I’m not OK, then there are steps I take. I can call a few really close friends and I have a therapist, too.
EYE: So staying focused on the moment can help us all with the current uncertainties facing us?
JANINE: There are so many big-ticket items we’re faced with now with global warming, political unrest and this pandemic. On top of that we all have other real life stuff to deal with.
So back to what’s really happening today, what’s really happening in this moment? It’s keeping life in small, manageable bits.
EYE: Switching gears, what challenges did you face with this first book?
JANINE: I remember the first agent that I spoke to who recoiled from me as if from a hot flame when he heard the word ‘brain tumor’ saying, “Oh, nobody wants to read about that.”
Yikes! It’s not a brain tumor book. It’s life on life’s terms. Getting someone to look at the story and the depth of where I wanted to go with it took some time.
I did find an agent, and I had a beautiful call with one of the big publishers, which was like an absolute love fest. And then they passed on it. I felt very rejected and sad. Others passed because “It’s too God,” “It’s just spiritual” and so on. And I finally surrendered.
Sometimes that’s when the best things happen. Maybe the point was for me to just write it. Maybe that was the whole point of the whole exercise until another publisher came up who loved all of it.
They turned out to be the right people. There was, of course, uncertainty. And I had to again take this professional opportunity in “bite size pieces.”
EYE: What would be your advice for a first-time author?
JANINE: First of all, don’t let anybody silence you. Our voices are so important and that’s why I love this genre of memoir. I have always gotten so much strength from other people’s stories. I need to hear that other people have done hard things.
Your story is important. Keep building your craft. Finally, I’m a much different writer than I was ten years ago, a much better writer than I was a year ago. So, just keep at it.
EYE: Do you have a final thought for dealing with uncertainty?
JANINE: You’re not alone. We are all in this. This is our duty as humans on this earth. It’s always been uncertain. We get through it together. Sometimes it’s really scary but remember we’re all scared. And yet there’s so much love. I’ve always found love big enough for any circumstance.
EYE: Thank you, Janine, for your precious time and wonderful insights. Certainly you are making a difference for many.
Photos: Alan Reid