Melanie S. Smith struggles with the trauma and pragmatism of terminal illness after finding a midlife love that was all too short.
It was the third week in April, when warmed soil breathed like decanted wine. Color was returning to the land after a long winter, and the swelling and stiffness, where six months before a neurosurgeon had cut open the back of my skull, had mostly disappeared.
I should have been ecstatic. The 55-year-old boyfriend — John — who had tended me through convalescence from unexpected brain surgery had asked me to marry him, and I said yes. I felt a quiet joy at the soft landing that was midlife love.
And then, abruptly, I didn’t.
I was back in the hospital and so was he, diagnosed with a stealth yet galloping cancer that could not be cured, only slowed. Not yet married, I was contemplating certain widowhood. The earth seemed to have violently buckled.
A terrible, tragic story, no? Six months later, when I was a widow, sharing even a snippet of it — with the Whole Foods after-school cashier, the 20-something bank teller, the white-haired copy-guy at Staples — brought complete strangers to tears.
Only the copy-guy had what sounded like wisdom: “People say he’s in a better place, but that doesn’t help you, does it?”
The answer was no. I was in the ordinary insanity of early grief, continually expecting my husband to reappear. Almost daily I opened the front door to peer out in search of him. I floated in the bright white room of my mind, untethered from reality, lost in the wilderness of grief. Eventually, I found my way out. But six months more and I wondered how I had gotten through, not the madness of grief, but the giving of a gentle death all while under the greedy vigil of the cancer-goblin.
What I came to is simple. It is the living of life itself, the lengthening of our timelines, that rendered me a woman who could — still healing a four-inch incision in my own head — face death and walk toward it, unflinching.
As predicted, the pile of cards and letters collecting on John’s bedside table far surpassed the meager trickle I had received.
I waved the unopened envelopes. “People love you.”
But as I read him the cards aloud, a common message emerged. It was a Salvation-Army standard with a one-word difference. “Onward Cancer Soldiers, marching as to war,” the cards seemed to trumpet. “If anyone can beat cancer, you can.” Others delivered the hated “What doesn’t kill you makes you stronger.”
“You don’t need to be almost killed,” I groused, “to prove you’re strong.”
John was a scientist who — during my own harrowing health ordeal — had calmed my fear and doubt with the repeated refrain that I needed brain surgery: it was just that simple. We adopted a similar refrain now: stomach cancer was incurable.
It was just that simple.
We knew that our approach was unorthodox. It might not sit well with family members scattered across the country, now clamoring to visit. We had held them off for two weeks so we could adjust to the news, but now I could almost hear the approaching footfall.
Two days after his first treatment, I sat on the bed holding John’s hand. We looked wordlessly at each other for a long while. The streaming sunlight had warmed the room so much that he lay uncovered, his swollen feet stretched out on the bed. Sallow and thin from weeks without solid food, his handsome face still delivered the thrill of new love.
“We need to talk about how we’re going to talk about cancer,” I said finally. “This doesn’t have a happy ending — I don’t want to have to pretend.”
“Me neither!” John gave a genuine smile.
We agreed not to indulge battle-cries or “God only gives what you can handle” messages. We deliberated about who should visit, and when and for how long. We understood that insisting on time to grieve might make others uncomfortable — even angry — but we committed to an experience on our own terms — and that really meant on John’s terms … and John did not fear the truth.
I pressed his hand to my heart. “I call this story ‘No Room at the Inn,’” I said. “This is why I always cry when we sing ‘Silent Night.’” It was a reference to how, at a candlelight advent service, I had wept uncontrollably while kneeling in the pew.
Almost sixteen years before, I had been a new mother with a critically sick son, whisked away and diagnosed with a rare metabolic disorder minutes after a C-section. Five weeks into his life-threatening ordeal, we had been flown from Boston to Philadelphia, where a surgeon would remove part of Zack’s pancreas — in a newborn, an organ the size of a Brazil-nut.
“I didn’t have a post-delivery checkup,” I told John. “I was at a pediatric hospital.” I didn’t tell him what I had wondered: If the incision splits and my innards burst out, what do I do? Or that I had been haunted by the image of my insides on the floor.
After surgery, my son had been moved from a patient room to neonatal intensive care, which meant there was no more cot for a parent. His father had booked a nearby hotel, but even a few blocks seemed a universe away.
“I’ll sleep anywhere,” I begged a hospital administrator, standing at her desk in my nursing nightgown. “I can’t leave my baby — I recently had a C-section, and I’m pumping breastmilk.”
“We have a custodian’s closet,” she said looking over her glasses. “It’s not too far from the NICU.”
“I’ll take it!”
Each night for four nights, I unlocked the closet, lit only by a crack beneath the door. On the floor, inches from wheeled buckets holding grimy mops, a blue-striped mattress had been outfitted with hospital-issue sheets. I lay down in semi-darkness, attached the pump, and filled two bottles. Afterward, I rolled to my side, my abdomen too weak and sore to pull me into a sitting position, and struggled to my feet. In the quiet hours between midnight and dawn, I trekked once or twice to the NICU to add my breastmilk to that of the other mothers, dishpan upon dishpan of miniature bottles stacked in an industrial-grade freezer. It was the work of intrepid women desperate — if they could not cure their infants — at least to nourish them.
But the mountains of breastmilk were not a panacea. Though he had undergone a successful surgery, Zack had to show the doctors he could eat, and for three days, he refused. More accurately, he refused a bottle, even one with breastmilk. The nurse tickled his chin to tempt him, but when she persistently popped the rubber nipple in his mouth, his pink tongue just as insistently ejected it.
“Can’t I just nurse him?” I had asked wearily. It was four o’clock in the morning. “I know that’s what he wants.”
The doctor was young, with a shaved head and a Russian accent. “Not possible,” he said without meeting my eyes. “We need to measure exactly his milk intake.”
I had gone into labor on July 31st, and it was now September 25th. I was desperate to go home. Conscious of my dirty hair, milk-stained shirt-front, and fingernails chewed to the quick, I pulled myself up with as much self-respect as I could muster and ignored the tightening rope of my scar.
“I know how much milk I get from each breast,” I said. “I’ve been pumping for eight weeks.”
The doctor continued to scribble.
“Four ounces from each side,” I added. “Every time, four ounces.”
“If it doesn’t work,” he grumbled, “it’s back to feeding tubes.”
I sat in a white rocking chair and cradled my son. He nursed until he was sated, his eyes glazed over, milk-drunk.
The doctor waited half an hour, then tested Zack’s blood sugar. It was normal.
Two days later, we were on a plane headed home. The frozen milk came, too, in Styrofoam boxes for transporting plasma.
I now smiled at John. “I went to the mat for Zack — and I’ll do the same for you.”
I was probably the only one who could. The cards and messages told of loved ones who needed to believe in a fight. But it was not a fight he could win. Getting through the ordeal with some dignity meant staying low to the ground, moving slowly, and telling the truth: John was going to die.
I looked at his trusting blue eyes and spoke a wisdom hardened in my bones.
“We’ve got this, John.”
We married a week later, minutes before a gurney wheeled him into a life-saving procedure. When the cancer took a hiatus, he was released from the hospital, and we spent the summer taking day trips to places with songbirds, waves, and wildflowers. In mid-August, over an elegant dinner in Portland, John complained of feeling sloshy, and by the next morning, he could barely breathe.
I sped from Maine to Boston, where doctors found cancerous fluid ballooning under his lungs. Two semi-permanent tubes were sewn into incisions between John’s ribs so we could drain the fluid and ease his breathing. He had taken on injecting himself daily with blood thinners, but he couldn’t drain the tubes because he couldn’t reach them.
I didn’t want to hurt him, but it would have to be my job. There was no one else to do it. Twice a day John would recline on the couch and bare his torso.
“Tear open the packaging,” I said, talking myself through the procedure. “Arrange the bottle, tubes, and alcohol wipes. Don the rubber gloves, and set the sterile field.” Then I would peel off the bandages and clean the blood-encrusted cuts. I wiped down the tubing and connected a vacuum-sealed bottle, and we watched it slowly fill with ale-colored fluid. Sometimes it drained too quickly, and he winced. Sometimes the liquid hung with red threads. But rarely did we speak. I felt his eyes fixed on me, knowing it calmed him.
Sometimes, without looking up, I said simply, “I know, John, I know.” What I knew was that he was entrusting himself to me. His cancer was my cancer, too.
One day he broke the silence suddenly. “I must look hideous to you.”
His words pained me, and my eyes filled up. I was cleaning a wound in creamy white skin with soft fine hair that I had many times covered with my lips. “You are never hideous to me,” I said. “I see the man I am in love with.”
I knew every inch of his body — his muscular chest and the buttery triangle below his navel; his sinewy thighs, bony kneecaps and big feet; the hairs inside his ears; the delicate crease of his eyelids. There was no part of him that my eyes landed on that I did not love or that failed to thrill me.
Cancer could not take that from me.
It took five months to deliver him to death, and not once did we turn away. Perhaps for this reason, my husband’s spirit was enlarged even as he lay dying. Cancer’s mess and disfigurement could extinguish neither courage nor love.
I would not have said, of those nights on a dirty closet floor and captive of anguish that my baby might die, that I was culturing the gritty heart of wisdom, only that I was trying to breathe through the suffocating corset of pain. But sixteen years later, the corset was finally loosened. The wretched darkness of that long-ago vigil now enabled me to face the unthinkable, and the walk toward death had valorized a broom closet. Its hard floor had given John his soft landing.
I will tell my grandchildren — if one day, I have grandchildren — that today’s sorrow may be the seed of a jewel. The same time that turns sand into pearls reveals the origin of wisdom.