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Monthly Archives: March 2012

I sat in our apartment’s living room in a state of stupor. A woman had just left, and with her went all the air in the room. I felt asphyxiated and paralyzed, except for my hands and knees, which shook and had gone cold. What the woman had said to me was this : that she knew — categorically — the cause of my illness. Our bed, you see, was tucked under the rafters of a converted loft space upstairs and an exposed beam on the ceiling was inconveniently — and possibly fatally — positioned just above my abdomen, the location of my disease. And because we lived across the street from Père Lachaise cemetery, we could either permanently shutter the living room windows with red curtains or, preferably, we should move.

I didn’t react when she was still there. I had welcomed her into our home, I had invited her and I was incapable of processing the violence of what she had said. My psyche seemed to be trying to temper the message, to take it with a grain of salt. I think I may have even thanked her before she left.

But now I was being consumed by anger. And though I felt frozen in place, my thoughts chased after her. They tore down the stairs, pursued her on the street and shouted : How dare you?

The woman, I’m sure, would say that she was just doing her job. She is an expert in Feng Shui, the millennial Chinese art of balancing energies to harmonize the architecture and organization of a given space. The woman was a friend of a friend. She is apparently well known on the Paris design scene and when our friend suggested we contact her, I figured it couldn’t hurt.

I have always been receptive to alternative approaches to healing. I dillydallied around yoga for years before I fell ill. And when I was diagnosed in 2005 I embraced healing arts — yoga, meditation, qigong, homeopathy, acupuncture — with a dedication that I now recognize was close to desperation. It took me a long time to begin to accept the cliché — but ultimately true — wisdom that what matters most is the journey, not the destination. My destination was to be well again. I wanted to sign a deal with the Universe : if I meditated for X length of time, if I perfected such and such yoga technique, I would win my health back.

There are, of course, no deals to be made. And the teachers that I have had have never promised me anything. They have guided me to moments of stillness and quiet centeredness. Moments that — no matter how fleeting — have offered a temporary but startlingly clear intuition. The world is suddenly self-evident. And in that moment, everything is okay.

It is ironic, then, that the only person to paint things in black-and-white (life-and-death) came from Feng Shui, the tenets of which I respect but consider superficial to the work and transformative effort required of meditation. Feng Shui, for me, boils down to decorative common sense. What I wanted from this woman’s advice was a new direction to point our couch. Not the equivalent of a spiritual eviction notice from our home.

In illness, our apartment had become my sanctuary. I practiced yoga there, I healed there. I lay on the floor and cried there. And almost every day — and especially after every chemotherapy treatment — I crossed the street and walked in Père Lachaise. The traffic and crowds of the city suffocated my post-treatment brain, but in Père Lachaise — the largest green space in Paris — I found solitude, air and rejuvenation along its cobbled, tree-shaded paths. Yes, it is a cemetery, but as my homeopathic doctor says, Père Lachaise is a place of history. A place of poetry.

About a week after the woman’s visit, I went to a consultation with a nutritionist in the 14th arrondissement of Paris. He had been, in fact, recommended to me by the Feng Shui woman and I had made the appointment before she came to our apartment. I decided to keep the appointment because in the vulnerability of illness I didn’t have the strength to completely disregard what she had said.

What she had done was unconscionable and irresponsible. I wanted to dismiss it as inconsequential bull***. But what if what she said — even just a little bit of it — was true?

And so I went, wary but willingly to meet her nutritionist, a doctor she had longwindedly lauded as a sort of Messiah of cancer care.

He was an older man of Eastern European descent (Hungarian, I think, judging by his accent) and though he lived on the top floor of his building, his apartment felt like a cavern. It was dark and crammed with loose-leaf piles of paper. Bizarre pencil drawings of geometric shapes and elongated, skeletal forms hung on the walls. The apartment, and he himself, oozed a mustiness, as if he hadn’t been outside in a very long time.

I listened to him but I took no notes — I felt no confidence in or affinity for his theories. But I couldn’t help but smile and I was happy that I had come.

Because across the street from this man’s apartment building — this man that the Feng Shui woman so obviously admired — was the green canopy of trees and quiet solitude of Montparnasse Cemetery.

Last week I awoke in the middle of the night to the soft sound of wheezing. I was jostled from a dream where I was very far away. I don’t remember the details, but it was one of those dreams where coming back to consciousness is momentarily disorienting. I sat blinking in the darkness. My hands touched my throat. Was this my breath? And then I remembered : the wheezing sound was, in fact, my dinner.

For the past 10 days I’d been eating primarily in my sleep. The evolution of my disease has been a creeping constriction of my digestive track. And considering that the average length of the small intestine is already a labyrinthine 22 feet, you can imagine the discomfort if a knot were to get tied somewhere in the middle.

And so, to give my whole eating apparatus a rest, a small pump machine doles out — with a rhythmic, soft push and wheeze — drop after drop of a white nutrient-rich liquid meal through a big-vein catheter implanted in my chest. This means of nourishment is hopefully temporary, and I am grateful that it exists. I am particularly grateful that it can be administered at home. I feel like a hybrid experiment : plugged in at night; unplugged and ready to roll with a full tank 12 hours later.

The frustration, of course, is that eating this way is a tether. I’m literally tethered to tubes and an I.V. pole. But I’m also tethered to a schedule. I have to be home when the nurse comes at seven in the evening. I am confined to home until she returns in the morning.

I am not yet debilitated by my illness. And when I can — no matter how short the stretch of good days I have before me — I like to get away. In France this is relatively easy. Drive an hour-and-a-half from Paris and your new surroundings are the iodine air and D-Day beaches of the Normandy coast or, if you go south, a chateau in the Loire. When we lived in New York City, the same time investment in driving put us in… New Jersey.

I was very pleased, therefore, to learn that there is a way to spend a leisurely day in Normandy, the chateaux of the Loire and 150 other historical French sites — and still be home in plenty of time for an evening I.V. feed.

FRANCE MINIATURE

Less than an hour from Paris in a suburb close to Versailles is France Miniature, an odd but ingenious theme park cut in the shape of France and presenting some 150 1/30 scale models of almost every notable historical site and monument in the country.

A well-marked path guides visitors through the park and starts with a little Savoyard village that, while intricate in detail, veers a little too far toward kitsch. When I visited, someone had tipped the little cow figurines and a sort of Sound of Musak played over speakers ad nauseam.

But as the visit continues, you quickly come to appreciate the effort — and wonder at the obsessive compulsiveness — necessary to build these miniature re-creations. The bay of Saint Tropez is splayed out in faithful realism. Every door, roof tile and window seems to have been studied and reproduced with exact precision. The same can be said for the Roman arena in Arles, the Sanctuary of Lourdes, the chateaux of the Loire and, of course, the main monuments of Paris. Even more remarkable is the fact that the park’s five hectares of land is mapped in the exact shape of France and includes nearly every aspect of everyday life. Over 60,000 figurines populate the scenes. There are 20,000 miniature trees; a car-packed autoroute in the direction of Marseille, and three miles of railway tracks traveled by 19 model trains.

At 1/30 scale, the size of some of the exhibits remains daunting. The Eiffel Tower, for example, is still 33 feet tall and the Chateau de Versailles and its gardens are a masterpiece as impressive — in their own way — as the original.

Most memorable, at least for me, is the model of the 81,000-seat Stade de France (France Stadium), the real one having been completed in 1998 to host the World Cup of soccer, won by France that same year.

The model stadium is not just a reproduction of its architecture. It is filled, to the rafters, with thousands of figurine fans. There is a rapt energy. All these hopeful people, focused on the playing field and the goal, expectant, waiting for something to happen.

PRACTICAL INFORMATION

France Miniature
Open daily from mid-April through August. Consult web site for off-season hours and ticket prices.

http://www.franceminiature.fr/en

The writing of the last post to this blog was a race between myself and the hospital. I knew they were going to call, but I was anxious to finish writing — to accomplish something — before the phone rang. I won the race, but just barely. The hospital called and announced what I already felt : bad blood. My latest blood test was, as usual, anemic, but this time really low, the worst since this all began in 2005. I had felt the bottom-feeding fatigue settling in over the past few days and I was, in truth, relieved to check into the hospital for a night of re-hydration and transfusion.

It was important to me to finish writing because I find it a little incredulous that I still can. For a long time I have been afraid to write. I was sure that the chemotherapy had scrambled my brain. I assumed that the chronic fatigue, the confusion and general fogginess of illness had stripped me of any ability I may have once had.

I’ve recently begun re-reading some of my old writing clips from before my illness, and I have been taken aback by a lot of them. There’s a lot of hyperbole, a lot of flowery phrases and un-tempered enthusiasm. I was trying really hard, and unfortunately you can tell. Still, some of it I think is endearing, and I miss that person. I realized that I wrote as I was : young, a little naïve, eager to succeed.

I suppose I still write as I am, but that person is of course very different : slower, more measured, consciously economic of breath and space. Sadder but wiser.

Through the endeavor of this blog I’ve had the happy realization that my voice is still there. And regardless of illness — and in many ways because of it — I still have something to say.

Which brings me to what I want to say in this brief, blanket post : thank you. I have been very touched by the comments left on this blog. And more so, I have been amazed that the insights offered have echoed so exactly my intentions for this project. It is gratifying to see that people seem to “get it.” It helps me to put a frame around my illness, to believe in my suspicion that I can make some sense out of — and find some calm in — the chaos.

In the summer of 2004, and for the next six years, we lived in a loft apartment in the 20th arrondissement of Paris. It was our first purchase of property anywhere and we were very proud. Not that there was anything particularly extravagant about the building itself. It was book-ended on both sides by apartment buildings sculpted in pierre de taille — elegant facades made from large blocks of homogenous stone, tailored, perfected and then etched above the doorway with the year of construction and the name of the architect. Our building was more modest : a five-floor facade covered in simple white plaster and built, most-likely, around the beginning of the 20th century (the only name or date I ever saw on the entranceway was in graffiti).

But the real-estate agent used the magic word in his description of the apartment : atypique. Unlike a cosy apartment — which can only mean “shoebox” — an atypical apartment can mean many things. In Parisian house-hunting lingo, the word often hints at originality. Something worth a visit. And indeed it was. One of three apartments on the fifth and top floor, ours pushed into the rafters, creating an angled, under-the-eaves second floor well suited for a master bedroom and office. Downstairs was a second bedroom and a large, sunny living room that looked onto a canopy of tall trees bordering the western edge of Père Lachaise cemetery.

After renovations and moving in, I became obsessed with the history of our apartment. Now that I was a homeowner, I wanted to know the genealogy of our home — who had come before, how long had they stayed, and whether, perhaps, they had been happy here.

I didn’t really know where to begin my research. The answers, however — all of them — came to me in the person of Edith Amiot, via the elevator from the first floor.

Madame Amiot was the first to respond to the house-warming invitations we had left in the mailboxes of our new neighbors. She was 84-years-old, very spry, and very determined to see our downstairs bedroom. She stood in the bedroom’s doorway and wrung her hands. “This used to be my room,” she said.

Mme. Amiot didn’t stay long that night. But I barely remember the other guests. All I remember is sitting with her and listening as she told me the outline of her life. She was born in 1920 in the industrial Norman port city of Le Havre. Her parents moved to Paris when she was just 11 months old and rented an apartment — this one — in the 20th arrondissement. She lived here for the next 71 years, through different iterations of family composition (first with her mother, father and brother; then with her husband and her own son, Claude, born in 1952 and who attended the same maternelle school as our daughter, some 50 years prior).

We became friends. And when I learned I was sick I cherished even more my time with Mme. Amiot. I understood that as a homeowner I didn’t really own anything. And in the vulnerability of illness, I realized that my time living in this apartment might be short — just a fraction of the seven-plus decades Mme. Amiot had lived here.

Over the next few years, I occasionally took Mme. Amiot to lunch. And when our daughter was born, she and I were often invited to Mme. Amiot’s apartment for an after-school snack. We talked most often about the weather and neighborhood life. But we also talked about her. I loved hearing what the arc of a full life sounded like. And I wondered if I would be granted the time to have the same.

She told me of the Occupation; how the building shook when a squadron of German tanks rumbled past. She spoke of the paranoia of rationing during the War and remembered desperate lines at the butcher when someone spread the false rumor that a side of beef had arrived in the neighborhood. She reminded me that her family bathed using the kitchen sink. There was no in-house plumbing, and any coal for heating — or food for eating — had to be hefted up the five flights of stairs. But she also spoke of beautiful sunsets behind the Sacré Coeur church, visible from the window of the apartment’s downstairs bedroom. She smiled while telling me about trying on the dresses made by her mother, a seamstress, and the content, 53-year marriage to her husband, a stoic, kind man who had been a prisoner of war for five years.

I learned that he died in 2001 and that Mme. Amiot was convinced that the decline in his health was precipitated by what was essentially a forced eviction from their — now our — apartment. In 1992 a developer bought the building, renovated the whole lot of 15 apartments and parceled them out to new buyers. Priced out of the top floor, Mr. and Mme. Amiot begrudgingly scaled down, buying on the first floor.

It was just a four-floor shift, but the differences were colossal. Instead of an airy view onto Père Lachaise, they now had a traffic-stained street and hot-yeast blasts from the kitchen of the street-level Pizza Hut franchise. But Mme. Amiot always seemed — and I think she was — happy.

Her apartment had a treasure trove of framed pictures. She loaned some to me, so I could study the past-to-present evolution of our apartment. I returned them all and — I don’t know why — I never in those years thought to take her picture. I recently sent her son an e-mail, hoping to fill a long gap in communication. I asked about his mother, but I haven’t heard back from him yet. I fear that she may be gone. And if that’s the case, I regret that I missed her end. That I didn’t say goodbye.

The last time I was in Mme. Amiot’s apartment, I saw a calendar tacked to the kitchen wall. Marked in shaky writing on the box for November 11 was “anniversaire de la petite Taber.”

I was already fascinated by, and a little envious of, Mme. Amiot’s story. And I was very proud to see our daughter’s birthday written into her calendar — proud that I had become a part of this long and very full life.

The Hôpital Européen Georges Pompidou, in Paris’ 15th arrondissement, is the flagship of France’s public healthcare system. It opened its doors to “malades” — the French language’s unfortunate choice of word for “patients” — in 2000. This is where I ended up in late 2005, when my health went downhill. I didn’t know anything about the hospital at the time. I just needed an emergency room, and Pompidou had the closest one to my office.

I’ve always been well treated there, and Georges Pompidou has the psychological advantage of a modern and well-considered architecture. Regardless of their quality, many Parisian hospitals have an air of dilapidated austerity. You get the feeling of going back in time — too far, you think, for adequate care. Pompidou, on the other hand, is contemporary and appeasing in its design. It has an open-space, airy lobby, capped by a sloping glass roof that charges the space with an optimism of natural light.

My favorite thing about the hospital, however, is the hot-air-balloon ride.

The hot-air-balloon attraction (officially titled “Ballon Air de Paris”) technically isn’t part of the hospital. It is anchored at the adjacent Parc André Citroën, 14 hectares (35 acres) of green space resurrected on the former grounds of a Citroën car factory in 1992. The park is modern, angular and manicured. But, unlike many of the more-famous Paris gardens, you can set foot on the grass here without a man in uniform hustling over like an angry squirrel, making a “nut, nut, nut!” sound and pointing at a stay-off-the-grass sign.

And, of course, no other park in Paris has a hot-air balloon. You don’t get as high as the 276 meters (905 feet) of the third observation deck of the Eiffel Tower. But the balloon’s 150 meters (492 feet) of altitude — and the sometimes precarious sensation of free-floating — are more than adequate for a bird’s-eye perspective of the city.

I remember being at the hospital at the beginning of my treatments. It was a marathon day, calling for both a transfusion and chemotherapy. I watched the drip-drip of the i.v. with detached resentment. Out of the corner of my eye, I saw a white shape rising like the moon to the level of my window. It was the balloon and I watched it, transfixed. Over the years, on numerous occasions I’ve been lucky enough during a consultation or during a treatment to be in a room with a view of the balloon.

But I didn’t take a ride in it myself until just a week ago. As we lifted off the ground, the handful of passengers crowded on the side of the balloon with a sweeping view onto the Eiffel Tower and central Paris. I lingered, alone, on the other side, watching the hospital right below me grow smaller and smaller. I liked what I felt. The feeling of rising above it all.

PRACTICAL INFORMATION

Ballon Air de Paris
Open daily from 9 a.m., but flights could be suspended due to unfavorable weather. Call ahead.
Telephone : 01 44 26 20 00
www.ballondeparis.com

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.