As a journalist, when I write about health — mine or others’ — I normally take the long view, looking into the past with vision sharpened by hindsight. Not this time. It’s been three months since Julie’s diagnosis, and already it’s our family’s new divide: The day before, we were planning a festive family Christmas in New England; the day after, there was a new plan in the offing. Julie would spend the holidays recovering from her first round of chemotherapy, which was to follow what’s called “debulking” surgery, an all-day procedure to remove all visible cancer.
This is what I call the shock of the new. A scary diagnosis is one manifestation. So, too, is losing a job suddenly, watching your house go up in flames or becoming the victim of a violent crime. My shock at her diagnosis felt like a blizzard sweeping through my brain. “Whiteout!” shouted a voice somewhere inside me. Information overload. Emotional pandemonium.
This kind of shock, unfortunately, is familiar to me. One morning, when I was 26, I was teaching a class at the University of California at Berkeley. Two days later, I was being prepped for surgery at the University of California at San Francisco. In between, I’d been diagnosed with testicular cancer. Back then, I learned that the whiteout eventually dissipates in the first several weeks or months, morphing into what I came to understand as the “new normal” — life with cancer.
Unlike when I was younger, I now have some excellent tools at hand to steady me through transition: a regular meditation practice, supportive friends, a loving family, a good therapist, a pretty healthy diet and a commitment to exercise. Still, when friends ask if I’m okay, my answer these days is “Not really.”
I found myself needing more advice about navigating this new landscape. I turned to my Facebook community and posted: “Living with uncertainty: How have you managed through this?” I wasn’t coy: I added that I was asking for myself.
The volume of responses astounded me, more than 100 in two days. But more than the sheer number, I was — as I wrote on my wall — “truly in awe of the collective wisdom” and emotional support my friends provided. I was also reminded of the profound heartaches many of my friends had suffered.
Some of their advice proved extremely practical. “Don’t try to escape through sleep,” wrote one friend. I read that after an afternoon nap, where I had indeed, tried to escape, only to awake groggy and still anxious.
“Distract yourself with something fun or binge-watch a worthy series on Netflix,” suggested another friend. Tell me, please: Why have I chosen this month to catch up on “This Is Us,” the NBC tear-jerker that emphasizes the ups and downs of three siblings. (Julie and I have a brother, which makes us a matched set to the fictional Pearsons.) I switched to the new “Will and Grace,” which is a guaranteed laugh-a-thon. Yes, laughter is potent medicine.
A colleague explained on my wall, “keeping control over the more simple things — a clean house, a gym routine, frequent social engagements — helps to keep some balance amid the upheaval.” That very afternoon I vacuumed the house like a person possessed and then decided to make a challenging Mark Bittman recipe for dinner. Success! I posted: “Cleaning and cooking really helped me feel like I accomplished something positive.”
Another friend suggests “starting and ending with a disciplined mental inventory of those things to be grateful for.” I’ve been doing this for nearly a year, and he’s right: There’s nothing like falling asleep with gratitude on your mind.
My friend Mark, a longtime survivor of AIDS, wrote: “Look at your feet. When I do, it reminds me that I’m right here in this place and everything is fine.” I have not done that — yet. Robin wants me to “connect with others who are navigating similar waters.” I join a support group for ovarian cancer caregivers. Again, I turn to Facebook and ask: “Do I know any women who have ovarian cancer?” My wall lights up with yes after yes after yes. Robin’s suggestion opens the door in unexpected ways, as I learn I am not alone in this snowstorm. Nor is Julie.
“I do it by compartmentalizing,” Beau writes, which means he puts troubling emotions in a mental lockbox. Out of sight, out of mind. I’ve found this to be a boon to day-to-day functioning, but I know it’s not the long-term solution. Lockboxes cannot be hermetically sealed, and eventually they leak, overflow or erode. Then comes the flood. I’d prefer not to get soaked.
Others waxed more philosophical. Susan, a widow and mother of two who has endured nearly two decades with non-Hodgkin’s lymphoma, posts: “Surviving — and even thriving — in the face of intense challenge and anxiety-producing adversity has been about trying to step lightly and gratefully from one stone to the next in the swirling waters of change, uncertainty and concern. Locating these stones, the centered pieces of existence, has been an ongoing endeavor.”
But it’s my grad-school friend Julia whose words really changed my perspective. More than 20 years ago, her husband, Greg, suffered what she calls “a catastrophic illness” and died, leaving her with two young daughters.
“When things are overwhelmingly hard and scary, and the prognosis is generally not good, sometimes hope lies in the unknown. Uncertainty is hope.”
I had never imagined uncertainty in that way. When there’s no hope, I realized, the future is certain, dead certain.
To my morning meditations I added a new mantra: “Uncertainty is hope.”
With that vision, the snowstorm began to clear a little and I felt I could see a path ahead. Right ahead of me was the sign pointing to the “new normal.” For now, that’s good enough.