The Washington Post
A chronic life, or the delicate balance of love and fear
Iam sitting in my psychologist’s office. He specializes in behavioral therapy, which is wonderful, but I’m not sure how to behave anymore. Three summers ago, I wrote a memoir as a love letter to my family, a lasting gift to my young son after I was gone. I wanted to explain what it was like to try — and perhaps fail — to overcome my diagnosis of Stage 4 cancer in a culture that believes everything happens for a reason. I had spent my 20s becoming the leading expert in the American prosperity gospel, the message of health, wealth and happiness that populates megachurches with assurances that we can all “live our best lives now.” I wanted my son to know how hard I had tried to live, to stick around to be his mom, but I was realizing that my expectations for my own future were based on a lie. Facing death at 35, I could no longer believe that the universe doles out what you deserve.
To my surprise, immunotherapy drugs and surgeries have been wonderfully effective. Cancer used to be a daily crisis of soaring highs and lows, but in the intervening years (I’m now 38) it has become something different, something chronic. Some days, my doctors talk about my cancer like there is a narcoleptic murderer somewhere in my house who is not entirely sure whether to kill me or go back to sleep. Other days cancer seems like an annoying neighbor who makes a lot of noise
but who probably won’t come over again. Cancer could kill me or leave me alone, so how afraid should I be? I ask my therapist.
“It’s hard for me to know when to stop being afraid,” I tell him. “I have no idea what’s going to happen. Plus, being afraid helped keep me alive. I learned to read medical reports, doctor’s expressions, clinical trial notifications. I learned to be extremely responsive in a complicated medical system because I was so afraid.”
“It was wonderfully useful,” he agrees. “But you can’t stay in this state of extreme vigilance.”
“What would you do if I were afraid of heights?” I wonder.
“Well, we might take you up on a roof and sit there until you relax. It’s called exposure therapy.”
“What if you took me up on the roof and it caved in multiple times?” I say, too loudly.
“It would take a lot longer,” he laughs.
Life is full of surprises — both beautiful and tragic. But for those of us who have experienced the worst possible scenario, it feels like lunacy to forget the downside risks. Gone is the ease of answering questions such as “How are you?” or the comfort that used to come from the lovely assurance that “This too shall pass.” It probably won’t.
I crave language to account for life lived alongside the fear that persists. So I sat down to talk with writer Jayson Greene, whose 2-year-old daughter was killed in a tragic accident. He and his wife, Stacy, made the courageous decision to love again, to have a second child, after knowing what it was like to lose a first. I asked Jayson how he learned to take risks when he knew the cost. The decision to have another child was “not a hard one,” he said. “It felt soft. It was the realization that grief only proceeds out of love.”
Speaking with Jayson made me realize that the locus of my greatest fears — leaving behind my son and husband — could also be that daily nudge, asking me to stay as awake to my love as to my fear. To say, “I know the world is full of things to fear, but our love will make a path. We will learn to plod ahead even though love itself makes us terrified that we cannot be without each other.”
Our society finds it especially difficult to talk about anything chronic — meaning, any kind of pain, emotional or physical, that abides and lives with us constantly. The sustaining myth of the American Dream rests on a hearty can-do spirit, but not all problems can be overcome. So often, we are defined by the things we live with rather than the things we conquer. Any persistent suffering requires being afraid — but we hang our fears in the balance of our great loves and act, each day, as though love will outweigh them all.
Life is chronic. Fear will always be present. I can only make those brave, soft choices to find my way forward when there is no way back.
Kate Bowler, associate professor of history of Christianity at Duke Divinity School, is author of “Everything Happens for a Reason: And Other Lies I’ve Loved.”