Who can explain cancer? Certainly not me. Still, once my breast cancer diagnosis was confirmed and a treatment plan in place, it fell to me to explain it all to our dependent young-adult kids, Dara and Tony. In some ways their limited cognitive abilities and Tony's meager social interaction skills made it easier: breast cancer simplified.
I picked my moments carefully and delivered bits of treatment trivia with a deliberate air of nonchalance. "This is good medicine," I told them regarding the 12 weeks of chemotherapy facing us. We had finished dinner and were all sitting around the kitchen table, a setting I hoped would evoke a cozy ambiance. "It's fighter medicine. It works very hard to make me better, but while it's working I'll be weak and sick. I'll need lots of sleep and some special foods to make me strong again." They took this in, nodding, looking only slightly puzzled. "I might throw up a lot, but then I'll take some special pills to make my tummy feel better."
I could see Tony's concern growing, and it surprised me. Being autistic he rarely expressed much understanding of the abstraction we call the future. Now was more his milieu, and at the present moment I was looking and feeling just fine.
"And you know how grumpy you feel when you're stuck in bed with a cold or the flu?" I continued. "Well, I just bet I'll be grumpy too."
I paused, and Tony jumped to his feet, his eyes fastened on mine. He bent over me and wrapped me in his big, warm man-arms. I was thunderstruck: this was Tony, normally unmoved and unmovable, suddenly offering a hug. Tony, up close and holding me tight, his face buried in my neck. I barely breathed, memorizing the unprecedented sensation of intimacy with my son. For a long moment he clung to me before he spoke, his mouth just beside my ear. "Oh, Mom," he breathed. "I'm so glad it's not me!"
How free! And how freeing! For days I'd been receiving the condolences of friends and family, expressions of sympathy, offers of help. They were, each in its own way, reassuring, and I valued them all. But beneath the shock and grief there is always that other feeling, too, the one we don't express: the relief that it is someone else who is ill and not ourselves. I know it. I recognize it, because I have felt it myself.
I continued to deal out cancer information incrementally, hoping to avoid overload -- theirs and mine both. Dara always listened stoically, her brows knitting in empathy. Resilient and practical, she responded by ticking off the chores she would take over for me: laundry, cooking, dusting, grocery shopping with Dad. Tony sailed unruffled through my accounts of up-coming surgery, daily radiation, and the weeks of gradual weakening from the cumulative effects of treatment. But his serenity was shattered when I told them I would lose my hair.
Fair enough -- it shattered my serenity too. As a history buff I was familiar with the opinions of William Prynne, a 17th century British Puritan pamphleteer. "A woman with cut hair is a filthy spectacle," he wrote, "and much like a monster." I wanted to think that characterization died out along with the rest of the Puritan strictures, but I recalled haunting photos in my history books from the close of World War II, when French women who had cohabited with the occupying Germans suffered a shameful public shearing at the hands of angry patriots. Closer to home were the skinheads of the previous decade, declaring their racist convictions with their lack of hair. I had to conclude that, like it or not, hairlessness still had a meaning. "Much like a monster."
In Tony's mind, though, hairlessness had nothing to do with shame. For two days he was agitated and cranky, glancing my way with a look not so much of sadness as distrust. Eventually he found the words to express his distress. We were all in the kitchen, getting ready to sit down for supper. He had been chattering to himself in his usual self-entertaining way -- something about rogue pick-up trucks being swept away in the summer monsoons -- when I detected a change of tone, from exuberant to introspective. "If you lose all your hair," he said, without looking up at me, "how will I know it's you?"
My own question exactly. But Dara, ever cheerful, had an answer: "We'll know her by her laugh!"
In that case, I figured, we were all in trouble.
* * *
Throughout the centuries, people who fall ill have been treated with potions and procedures from crude to cruel. Judging by the faces of patients in ancient etchings and paintings, the common denominator of old-style medical treatment was prolonged pain and anguish. Our current disease philosophy, though, focuses on aiding the body's own defenses with sophisticated combinations of drugs, surgery and various forms of advanced technology. So it is always disturbing, when I push open the door into the oncology waiting room, to discover living faces that match the old pictures, grimace for agonized grimace.
It is close to noon when the four of us seat ourselves in the waiting room for my third chemotherapy treatment. My surgery scars are healing, my hair has long since vanished, and Tony is no longer the only one in the family who fails to recognize my former self in my present incarnation. The room is full of other ancient sufferers, some of them barely out of their teens, but all of them wearing masks of misery. I slouch in my chair and gaze at Bob and the kids across from me. They all look exactly as they did the day of my cancer diagnosis. Only I have aged. When we're done assaulting my body with toxic chemicals and my hair grows back, will it be white? Even if I laugh, will Tony know me then?
As I contemplate the weird disorientation of it all, Dara suddenly lurches to one side, slides off her chair and lands, half-conscious, in the oversized potted ficus beside her. Diabetes is like that, though it has been a long time since we've dealt with a serious emergency. I'm on my feet at once, shouting for Bob to hand me the emergency supply kit we carry with us everywhere. Or, to be exact, I carry it with us everywhere. Me, the mother. As I stand there enfeebled, my motherly roles stripped from me by my fiendish diagnosis, I assume someone else has picked up on this most fundamental of duties. But no one has. "It's in the car," Bob says, managing to look panicked and sheepish at the same time.
"What!" I say. Mothers who have the responsibility for their adult children with disabilities should not be expected to deal in both their own decrepitude and someone else's crisis. "What do I have to do, tape the supply kit to your noses?" I never make sense in an emergency.
With effort I right Dara in her chair while Bob dashes to the car and the forgotten supplies. He returns at a run, the mini-bottle of orange juice already open in his hand, and together we steady Dara while she drinks it. Within minutes she is herself again. She attempts a smile. "Noses!" she says, appreciating the absurdity.
She surveys the room, and I follow her gaze. The attention of every patient there is riveted on our little drama, their faces open, drained of their familiar anguish. Dara, usually shy, warms to the transformation. "There, see?" she says, and gifts her audience with a broad smile. "Now you all have something else to think about besides cancer."
So do I. All around me relieved laughter fills the room. I laugh too. We all do: all the other patients, Bob, Dara. Even Tony, maybe because in all that joyful noise he finally recognizes me again.
A woman's work, they say, is never done. Especially not this work, or this woman whose kids need her still and will need her always. Hopefully one day the cancer treatment will end, and my body will be on track to heal itself. I will regain at least a semblance of strength and balance. Maybe even poise.
What I've lost forever is that brash assurance all mothers feel deep down, that as long as our kids need us we're exempt from aging and imminent demise. But for now I'm still here, completely recognizable. With the help of my kids -- who can cheer the mood of a roomful of despondent strangers in a moment's time -- I've been handed back my identity. I'm the keeper of the emergency supplies. The one who plucks her daughter out of the potted ficus. The privileged mom whose children are right there to rescue her from her bog of self-absorption and replant her on the firm ground of a treasured shared reality.