A chronic life, or the delicate bal­ance of love and fear

The Washington Post - - TUESDAY OPINION - BY KATE BOWLER

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.”

KEVIN WHIP­PLE FOR THE WASH­ING­TON POST

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