Here’s Who We Are

When I answer the phone, a woman’s voice says, “How do you do it? I mean you’ve been doing it six years! I’m only a few months in and I’m going crazy, crazy!”

It’s Francie again, calling three thousand miles from Pasadena. On the day her older son flew east to college, her husband was diagnosed with kidney failure. 

Both journalists, Francie and I met years ago in Chicago while covering, ironically, a conference on stress. Podium talk about juggling the many hats of the working mother brought laughter and plenty of “Amens” from the audience. There was no mention of what I was going through, though – wearing all those hats, plus living with a chronically ill husband who needed to be assured about his manhood and his adulthood. I was alone and growing lonelier. I couldn’t speak to my husband the whole of my sadness at what was happening to him or much of my sorrow at the loss of a life’s companion, and nothing of my daily fear that I wouldn’t be able to keep the kids in jeans or myself from eventually becoming like an older woman I knew who, when she turned her disabled husband over in bed, would sometimes “accidentally” scratch him with her fingernails.

“Seven years,” I remind Francie. “And it was only this year I got my second wind. So tell me, what’s happening/”

  Some moths my phone bill to the coast hits fifty dollars. It’s worth it. What Francie is going through provides me with a backward glance at myself, lets me forgive myself for emotions that seem perfectly justified when they come from her, and shows me just how rocky our road is, and how far I’ve traveled. “God,” Francie says. “Just knowing you’re intact is what’s keeping me going.

“But I’m not in intact,” I tell her. “You never knew me before! I’m a shadow of my real self.” There was a time, for both of us, when the future held promises instead of threats.

We laugh.

Oh, it’s good to laugh.

We hang up because her younger son has come home from school and is lying on the floor again, sobbing. Francie must go now. She knows how to give strength to the child.

We all do.

We know how to support our husbands, too.

The problem is ourselves.

Who’s helping us?

We’re helping each other.

Mainstay isn’t about dying; it’s about living married to someone sick – not through a short fatal cancer or heart attack but through years and years of illness without cure. There may be seven million of us well spouses on this path, men as well as women. All we usually see of each other is a vanishing heel or an occasional, distant wave. In this book, we will finally get together. We’ll tell each other our stories and share our hard-won learning, along with practical, workable advice – some of it from professionals in various fields but most of it from the common personal experience of the real experts, those of us who live here.

Something is Wrong

“I’ll call as soon as I hear.” Ted spoke calmly so as not to alert the children. He pulled me close, smelling sweet at the neck. Then he took Seth’s hand and the two of them walked out the door toward the elevator. Everything looked okay: a tall, curly-haired man with his tall, curly-haired son. Nobody would have noticed that the man’s stride fell slightly off, that his right foot failed to swing forward as surely as his left. 

“Come on, keed!” I whispered to Debbie, whose tie-dyed shirt looked more dirty than dyed and whose gold-rimmed granny glasses sat funny on her nose. They were always getting twisted and after I’d straightened them out with the special pliers and stuck them into the straight black hair behind her ears, we grabbed hands and ran to the elevator. The whole family wore glasses. Whenever we boarded a bus together, people would stare us to our seats, figuring the genetic possibilities. “It’s okay,” I always wanted to call out, “we’re just readers….”

“Bye bye! I waved at her sweet face in the big yellow camp bus – windows open, kids’ arms on the sills, everything normal. Wasn’t it?

Hurry back. He could know already. He could be calling you. Let it be no. But if it’s yes, it would explain so much: I had begun to look back and pinpoint strange moments in our dozen years together.