I don’t orate very well. When I want to express something, I do it better writing than speaking. Writing became my profession, and yet, for the six-plus years that I have been sick, I’ve barely written a word about it.
“It” has been life-shattering and -changing, excruciating and enlightening. It should be good writing fodder, but I’ve chosen to deny it its rights to expression. Mine, I think, is just another cancer story — though I’m starting to change my mind. Maybe something I write could help somebody else. Maybe it could help me. I’ve tried very hard to occult my reality. I do the treatments and I accept the responsibilities of striving to get better. But when I am better — between treatments and on good days — I am fast and talented at pretending that all this isn’t happening. In those good moments, my life is back. I am back. Until, invariably, I am gone again.
I did write — just once — about my illness. The text, which dates to January, 2006, sets the context of my life as I now know it. I’ve decided to post it here, as the sendoff for this blog.
I’m looking at a monitor, scrutinizing a vacillating black-and-white image of our daughter as the doctor says “Everything looks fine” and squeezes more goo onto my wife’s abdomen. This is the second sonogram of my wife’s now 21-week-old pregnancy and I still can’t shake the feeling that this is PlayStation : the doctor with his roller-ball joystick; the targets he ticks off with quick precision (“That’s the umbilical cord. Here’s a foot.”), the whumpa-whumpa techno-paced soundtrack of the heartbeat.
“It looks like she’s sucking her thumb,” the doctor says. “Can you see that?”
“Yes,” I nod, lying. I’ve never been good at video games.
Our daughter’s name, we decided, would be Aleyna Narai Taber. Aleyna because we like it, Taber because that’s our name and Narai because it’s the very pretty name of a hotel we stayed at in Bangkok.
The Narai — a large, corporate-style hotel in the Silom district of the Thai capital — is not where Aleyna was conceived. The timeline of her life began a few weeks prior at our home in Paris, a lucky bulls-eye on an initial attempt at parenthood. The Narai was significant because it was a place of salvation, an oasis at the end of a very strange desert.
We had been on vacation in Vietnam for five days, and over those five days I felt as if I had aged 50 years.
I was wracked by phenomenal fatigue; the smallest staircase sent an ocean’s roar of blood to my ears. My sense of balance was failing and my eyes had pooled with a jaundice-yellow hue.
I thought it was the flu, but the diagnosis was “hemolytic anemia of an unknown cause.” My immune system had become a vampire, destroying its own red-blood-cell supply to the point of warranting an emergency blood transfusion — an unsanitary and unthinkable procedure in Vietnam.
After an interminable 17 hours of administrative and insurance haggling we left Hanoi aboard a private air ambulance bound for Bangkok. I was 17 hours weaker, 17 hours during which I didn’t dare close my eyes. Gurneyed and E.K.G’d on the plane, however, I felt the safety net of modern medicine. I slept, leaving my wife clutching my hand, wide-eyed and watching my stomach to make sure it still rose and fell with breath.
For the next two weeks, Bangkok General Hospital was home. I would eventually be alright, the doctors said, preparing me for what would be months of medication and a sluggish recuperation of my former self.
I slumbered in a hole of self-pity, ruminating a whole host of black thoughts until one day when my wife emerged from the hospital-room bathroom with a peed-on dipstick in her hand. “I’m pregnant,” she said.
The situation was surreal and almost ridiculous, worthy of the worst television daytime drama. My wife took the elevator to her first sonogram appointment. “Where are you staying in Bangkok?” the secretary asked her, taken aback by her reply : “Uh, the 14th floor.”
Eventually we were released to the Narai hotel. We taped the sonogram image to our hotel room’s window, thought up baby names and puttered around Bangkok. The Narai was our oasis, a four-star holding cell as we waited for my hemoglobin levels to climb to travel-safe levels.
When they did we went home to France. My wife’s stomach grew rounder and I went back to work. A few months later a painful mound began to push at the base of my neck. It was a blood clot that required a few days of hospitalization. A CT scan showed abnormalities and a biopsy considered and then confirmed the “C” word.
The Narai hotel was not an oasis. It was a mirage and the desert still stretches to the horizon.
Our daughter’s name, we decided, would not be Narai. She is Aleyna Sage Adeline Taber and she is almost two months old. A week ago, on the day before my latest chemotherapy treatment, I sat in bed with Aleyna propped on my knees. I gazed at her and she smiled. It was the unfettered, pure-eyed smile that only babies can do. I smiled back. And through my tears all I could see was her.