Commentary

 

Cutting down to size

Me and my big, fat head.

It’s swimsuit season, which means it’s time to start obsessing over weight and body image. Of course, weight and body image are as American as deep-fried Twinkies and apple pie a la mode. Obsessed over by both the government and the news media, weight is not solely about obesity, but a continuum:

Dangerously Thin |———————| Normal Body Type |———————| Morbidly Obese

Nobody wants to be dangerously thin or morbidly obese. Most of us content ourselves with falling somewhere in between, and take comfort in being “normal body types.” But there are folks who are not “dangerously thin” or “morbidly obese” or anywhere near “normal.”

They’re larger than life.

The first time I recall meeting someone larger than life was at a social gathering, one of those things where friends of friends finally meet one another. My friend was the party’s host, and she sang at my very large church. I recognized at the party several of her singing friends. I knew these folks only from the JumboTron; I’d never encountered them up close and personal. A few of them brought my celluloid imaginations of them down to proper size, but one commanded the room with her presence as she did from the screen. I wasn’t attracted to her, but I was struck by her. She filled the room, yet remained unapproachable — to me at least.

She was larger than life.

I met another such person recently. I’ll call him Thor, the Lutheran pastor. Thor, of course, is the Norse god of thunder and a founding member of Earth’s mightiest heroes, the Avengers. And it was on a Thursday — “Thor’s Day” — that Thor the Lutheran pastor was in a church telling me how to take care of people. Funny, engaging, and nice, he held the attention of everyone in the room, whether he was saying something silly, offensive, or absurd.

He wasn’t dangerously thin or morbidly obese. He was large and in charge.

And to say I “met” him would be an overstatement. I didn’t introduce myself, because there was no point. He wouldn’t remember me and shouldn’t be bothered by me.

Do you know anyone like that? I can count one or two such larger-than-life types as close friends, but they’re always referred to by both their given names and their surnames, as though one name isn’t enough. They’re good people, doing their best in the world, not going out of their way to draw attention to themselves. But they don’t have to. They were made for the stage and the big screen. There’s a kind of unbridgeable gulf between them — and us.

We find ourselves in awe of such people, especially when they do merely human things. Us magazine has a regular section called “Stars: They’re Just Like Us!” with photographs of celebrities tapping melons and buying gum and scooping their dogs’ poop.

We are awestruck. There they are, living their larger-than-lives. Just like us.

I’ll admit there are days when I wish I were larger than life. I got my chance when I stopped attending a very large church in favor of a very small church. I was 25 years younger than the average congregant. I was well-skilled in the art of very large churching: I was gregarious and magnanimous. I was a handshaker and a backslapper. I was as large-as-life as I can get.

I joined the church’s drama troupe and got to wow the congregation with my grand theatrics. I joined committees and wrote for the church newsletter, which showcased my wit and vocabulary. I released my first book, made a community-outreach video, and became an elder, impressing everyone with my commitment and accomplishments.
And then the day came for the dress rehearsal for our large-scale Easter production. I was the star in two scenes, where I sang a solo and entertained the hoi polloi with my backstage antics. At one point, the pit musicians dropped a cue. Being the consummate acting professional, I waited briefly and then, with great irritation, began my solo. After the rehearsal, I boomed in my larger-than-life voice, in front of the whole cast and crew, “Am I going to get accompaniment for that song or what?”

The next day I magnanimously approached the piano player to make sure we were on the same page after the previous night’s fiasco. She had prepared a statement:

“You know the Bible a lot better than I do.” True, I affirmed, thinking, you hardly know the Holy Scriptures at all, while I know them backward and forward, thank you very much.

“But I’m pretty sure it says something in there about settling disputes privately — not in front of everybody.”

Okay, sure, it does say something like that.

There are times when I like to think that I’m larger than life, but I’m not. It’s all in my big, fat head. In reality, my frame can’t support such an oversized cranium, so sooner or later I’m going to collapse under the weight of my self-regard.

I'm reminded of King Saul, the unwilling first king of Israel, who stood taller than his peers and drew attention to himself without effort. Even when he hid during his coronation, the people sought him out. In making him king, the Israelites were sending a message to the surrounding communities: This is our king. He’s important, powerful, awe-inspiring, and larger than life — just like us.

Soon enough, Saul started playing the part and got himself in over his big, fat head. Meanwhile, his actions got smaller, pettier, and hurtful. Eventually, a larger-than-life Goliath would take his place, and an easily overlooked shepherd boy, David, would bring that giant down. David’s legacy in the Bible is not as a larger-than-life being, but as a down-to-earth, flawed human being — just like the rest of us.

So this summer, while I’m fretting over my figure and watching my weight, I’m going to keep one eye on my big, fat head. It’s the least I can do.

Of course, I’ll keep an eye on all the little people as well. I don’t want to step on their toes as I make my way.

 

My house is fat

200706_house.jpgAttack of the junk bulge.

 

My house is fat. I still love it as I did when my husband and I bought it with dreams of a future in which the house was to be slender and beautiful.

But I have to say, the physical attraction is waning.

Once upon a time we lived in a tiny 1930s house, the kind where you could grab the toothbrush off the sink and get your shower running while sitting on the toilet. Not that I’ve done that. Back then, Dave and I vowed not to let our house turn into the cluttered mess we knew most American houses become. No exploding closets, no cars in the driveway because the garage is filled with Christmas decorations, no favorite clothes kept around just in case they come back into style.

Use it or lose it was the motto. And for a while, it worked.

Then we moved into a bigger house. Not a McMansion by any stretch of the imagination — we live in the San Francisco Bay Area, where a cardboard box costs $400,000 — but a decent, three-bedroom home with closets, cupboards, and a two-car garage. We needed to buy a few things to fill it out. And then, in replacing some of the old drab stuff, we bought new items and put the old ones — an old couch, chair, and tables — in the garage. Temporarily, of course.

And then we had a baby. Suddenly, there was no time to sift through our belongings and take trips to Goodwill. As baby products consumed every room, we shoved mattresses, cookbooks, and our daughter’s impressive wardrobe into every nook and cranny. And that old couch in the garage? You never know if a sibling or friend might need furniture. At least that’s what we tell ourselves.
 
As the house’s waistline grows, I know we should watch our intake, but I can’t seem to help myself.

I like stuff. I want stuff. Stuff makes me feel good.

I rarely walk into a baby store without buying an outfit for Sarah, even though her grandparents do a marvelous job of keeping her in high style. She has 18,000 toys, all of which she eats. We, the adults, have a mammoth television, Christmas plates, and half a closet dedicated to gift wrap. Recently, while reorganizing, I came upon a forgotten heart-shaped casserole dish. And still, as I perused Crate and Barrel for a media stand to hold our new TV, I wanted more. It got me thinking: Could I ever expect to have one of the thin, beautiful homes we see in the catalogs that rain down on us every week? Or is that dream as unrealistic as waking up to find I look like a supermodel?

Pottery Barn is one of these beauty magazine offenders. About every four hours we get a new catalog from them, and each one shows myriad, perfect rooms with a throw blanket and a pair of slippers at the foot of the couch. There’s no pile of bills, no overflowing laundry basket, and you certainly don’t find last season’s Pottery Barn décor shoved under the stairs. It’s perfectly sparse. It’s the skinny model I always wanted my house to be.

Instead, I open my kitchen cabinets and Tupperware tumbles out like rolls of fat over too-tight jeans.

Rather than purge belongings, a lot of people become manic about organization. Places like The Container Store have been established to satisfy this need. There are nearly 40 across the United States, and like gyms we go to for a week each January, they pretty much exist to make us feel like we’re getting our acts together.

I am guilty of this. I buy color-coded boxes, plastic bins, and shelf dividers, and bring them home to clear out the garage with the aim of driving my car into it. Ultimately, I just have too much stuff in nice bins.

You’d think Americans would catch on. We buy things in an attempt to improve our lives. Next, we believe that if we could just get our stuff organized, everything would be okay. Unfortunately, The Container Store can’t match the army of Pottery Barn locations in the United States, so our consumption is likely to far outweigh our efforts to get in shape.

Our society definitely makes it hard to live a lean lifestyle, but outlets exist to get our homes in fighting condition. On Earth Day, we dumped a TV and yards of extra cords at an e-waste recycling center. There are numerous places to donate clothing, furniture, and appliances to the less fortunate. And if we are really determined, we could just say “no” to buying things.

For our house, that’s not going to happen — at least not for a while. I’m resigned to it being on the chubby side, junk and all.

 

Knocking the weight

200706_interact.jpgSudden weight loss doesn’t make life as a woman any less heavy.

Halfway through my senior year in college, I came down with the flu twice along with pneumonia. For several weeks, I swallowed only Thai chicken soup and soy smoothies that were brought to me while I lay on my dorm room bed, coughing my lungs out. When the illness left, it had done what no amount of dieting or exercising had ever accomplished. I had lost every pound I’d gained since high school — not just the fabled “freshman 15” (okay, more like seven), but also the “sophomore four,” the “study abroad six,” and the “new boyfriend three.”

My lack of waif-like features had been an anomaly at my perfectionist Ivy school, but I coped. A proud feminist, I made a point of carrying my extra weight confidently. I felt as though my dress size separated me from the girls who played into sexist ideals and mournfully poured vinegar over their dinner carrots. Of course, negative body image drove me to distraction in private, but I could never wholeheartedly tackle the gargantuan — and in my mind, hypocritical — task of getting more than a few pounds skinnier.
 
And now I was sure I’d never have to. Back home for the holidays, I tried on my old clothes. My red dress from “sweet 16” parties fit perfectly. My embroidered cowgirl jeans fit, with room to spare. It didn’t matter that I would never have occasion to wear these ridiculous things again.
   
I was infinitely relieved. A chapter of my life spent feeling fat — and then feeling guilty for caring about my jean size when there was so much else to worry about — had melted away.

But it was naïve to think that all the emotional weight had left with the pounds. In our society, particularly in hypercompetitive niches like my college, size is crucial to our identities, reaching nearly as important a status as race and gender.

You can’t just sneak from fat to thin, or thin to fat.

The first comment I got after my recovery was from a friend whom I bumped into at a late-night campus joint. I was wearing a bulky ski parka, but this girl, who was particularly diet-conscious, saw right through my winter layers. “Oh my god,” she said accusingly from across the restaurant. “You got so ridiculously skinny. You must have lost 10 pounds in a week. Or was it 15?”

I was shocked. When I had been on the chubbier side, people didn’t comment on my body in front of others like that. An unspoken rule says that small bodies of various degrees are okay to moan over (“I’m so fat!”) and compliment (“You’re so not!”). But people who aren’t diminutive face a damning public silence. I was flummoxed. To revel in my friend’s scrutiny would have been impossible: “Thanks, girlfriend. That mucus in my chest really helped create a new me!” But I had been psyched to fit back into that red dress. I felt unusually speechless.

The attention came in a steady parade — some positive, some envious, some suspicious. “You look emaciated,” a close friend told me at a party that spring with a disapproving tone that was sounding like a familiar refrain. Again, my body — not my improving health — was being parsed in a critical way.

While once I was concerned about girth, I was now paranoid about girlfriends. I feared that my new size had thrown some secret pecking order off balance — that my friends had counted on my fuller figure and my feigned comfort with it to make them feel better.  Despite my idealistic aspiration toward a “we are all sisters” kind of feminism, my inner voice warned that I might have to get more stupid now that I was thin, or at least act more self-deprecating. I felt like a walking, talking threat to all the women I knew.

Back when other women had championed the South Beach Diet last year, I had scorned their agonizingly achieved slimness. Now their pissy attitudes about my change in size were forcing me to see that our bodies are always battlegrounds.

So I celebrated the “new me” by joining in a chorus of self-effacing comments. I would never have called attention to myself by stuffing a doughnut in my mouth and saying, “I suck,” when I was 15 pounds heavier. Now I could do exactly that, and I felt like I was joining a heretofore members-only club. And yes, I felt guilty about it.

But whether my self-criticism was silent or tellingly open, it was still there. Unlike the success stories trumped by women’s magazines, we women on all parts of the body-size spectrum still don’t think we’re good enough. And instead of turning against the society that makes us feel this way, we often turn against the woman who eats an extra slice of pizza or refuses dessert, shops one size up, or is a slave to the treadmill.

Engaging in this perverse group exercise of wailing about our waist sizes doesn’t do us any favors. Until we women stop being complicit in our obsession with weight, our relationships will be strained by the relentless need to measure ourselves, literally, against each other.

 

The labeling of a genocide

Who “wins”?

The definition of genocide — “the systematic and planned extermination of an entire national, racial, political, or ethnic group,” according to The American Heritage Dictionary — little informs us how to distinguish between a violent conflict and one that crosses into genocide.

Recognizing genocide is as much a political contest as it is a moral imperative. And in the court of international opinion, victims — and perpetrators — fiercely contest the labeling of a conflict as genocidal.

What was the first genocide of the 20th century?

If you said the Nazi Holocaust, you would be only semantically correct. The word “genocide” was not coined until 1943 when Raphael Lemkin, a Polish Jewish legal scholar, combined the Greek prefix for family, tribe or race (genos) and the Latin suffix for massacre (cideo) to describe what was happening in Germany at the time. If you answered the 1915 Armenian genocide at the hands of the waning Ottoman Empire, from which Lemkin first developed his ideas on the genocide, you would be closer, but still not correct.

The first genocide of the 20th century took place in Africa. But unlike the genocides in Rwanda and Darfur, where the victims and perpetrators are Africans, it was a German colonial occupying force that exterminated the Herero people in South West Africa (present day Namibia) between 1904 and 1907. The Germans laid siege to the Herero community, massacring close to 80 percent of the population and forcibly moving the rest to concentration camps.

Germany came late to the scramble for Africa and intended on making huge strides to transform their territories by relying on their significant industrial prowess to subdue both man and nature. Initially, Germany tried to legitimate their presence in the Herero homeland through legal means, but when a group of Herero rose up against what they perceived as an unfair German occupation, the response was swift and dramatic. After a crushing defeat in the Battle of Waterberg, the Herero were forced to leave their land and tens of thousands were slaughtered by the German army. “I believe that the nation as such should be annihilated, or, if this was not possible by tactical measures, have to be expelled from the country,” said General Lars Von Trotha, Kaiser Wilhelm II’s choice to lead the campaign.

It was in Africa that the Germans first began their use of concentration camps, a harbinger of what was to come within Germany 40 years later against undesirables like Jews, Gypsies (Roma) and homosexuals. Herero inmates were used as slave labor and experimented upon by German imperial scientists. In fact, Eugene Fischer, a young German geneticist who began his work on race-mixing in the Herero concentration camps, was a seminal influence on Adolf Hitler. Hitler eventually elevated Fischer to the top position at the University of Berlin where his star pupil was Josef Mengele, a leading architect of the German Holocaust.

In terms of the percentage of the population killed, the Herero genocide was more successful than the Holocaust, the Rwandan genocide and the killings in Darfur. Less than 20 percent of the Herero population — or fewer than 20,000 — survived. There are a little more than100,000 Herero living primarily in Namibia today and in smaller communities in Angola and Botswana. That a vibrant and diverse Herero community exists at all represents a tremendous recovery.

Given the historical significance, why don’t people know about the Herero? The answer is related to several factors that tell us much about the politicized nature of labeling a conflict as genocidal. Lacking a significant diaspora in the West, the Herero have never been able to demand recognition from the international community in the way Armenians and Jews have attempted to ensure their history is never forgotten. In 2001, a private foundation representing the Hereros did sue the German government and corporations in American courts. However, the German government successfully argued that the1948 Genocide Convention could not be applied retroactively. A century after the genocide took place, Herero groups did receive an apology from the German government in 2004, but no direct compensation was ever provided to the community.

Somewhat perversely, the term genocide has become so politically loaded that it has little meaning as a descriptor of contemporary ethnic and racial conflicts. Instead, it more accurately reflects the political standing of the targeted group in the West. As such, the application of the term has become more akin to a linguistic sweepstakes whereby persecuted minorities are awarded with recognition if and only if they can “win” the term’s application to their situation.  The downside of all this is the term inhibits us from recognizing the relative frequency with which minority groups are persecuted. We have become primed to care only when a conflict emerges in the international consciousness as genocidal — rendering others just forgettable.

 

Alone in the forest

Discovering the kindness of strangers in Cuba.

A truck had dropped me off at a crossroads. But instead of driving away, the well-meaning driver was still trying to tell me something. Probably, “No cars are coming. You’re in the middle of nowhere. Are you crazy? What are you doing, little lady?”

I got the gist, even though I didn’t speak Spanish. I started walking, and as the distance between us grew, I could hear him yelling that maybe this was a bad idea, and he motioned for me to get back into the truck. He honked again.

But I kept on walking. No time for debate.

I passed a man wearing a suit and a felt hat, who was also headed for San Diego de los Banos, a town known for its thermal baths. He was just standing there, waiting in the middle of nowhere, as if it were a bus stop. But there was no bus stop. No car or another person in sight.

Perhaps he is still waiting there.

The man said that San Diego de los Banos was a long way off — 15 kilometers at least. But rather than join him, standing in the countryside, with the chance that a car may never show up, I decided that if I walked fast enough, perhaps I could still reach the town by nightfall.

It was now 3:30 p.m. The sky was overcast. About three more hours of sunlight left. Remembering the distance of bygone high school cross-country races, I calculated that 3.1 miles equaled five kilometers. If I can walk three miles per hour, surely I can reach town by dark, I thought. It is doable.

So I began walking. And I walked and walked.

And not a single car came by.

The road through the countryside rose and fell, and soon, the flatness of the land gave way to a forest of pines and cedars. Not far from here, Che Guevara had moved his headquarters into a cave during the Cuban Missile Crisis. It was just me and this forest, and if I shouted, I’d spook myself.

Suddenly, two men emerged from nowhere, walking next to their bikes. Perhaps there was a house tucked away in the forest that I couldn’t see. I began to walk a little faster, but the two men were gaining on me.

Why are they walking next to their bikes? I asked myself.

My duffel was heavy, and I tried to pick up the pace, but they were getting closer.

I could totally be raped and robbed right now, I thought, clenching my teeth.

I stopped and let them overtake me. A teenager with his father on a bicycle ride, it appeared. They happened to be walking next to their bikes because the hill was on an incline.

“Hola,” they said, after I gamely raised my hand and said, “hi.” I knew I was safe after I asked them how far San Diego de los Banos was, and the man replied with a wave of his hand into the distance, “twelve kilometers. It’s far away.” I reassured him that I was hoping to flag a car that came this way. He nodded, and they soon passed me.

I walked a few more kilometers when I saw two other men approaching from behind — again walking with their bikes.

There is nobody around, so I am really at their mercy here, I began to think. Suppose I get killed in this forest. The Cuban police might take a week to identify my rotting body from my passport photo. My imagination was getting the better of me again; I began to wonder how much media coverage the story would get at home.

And then, the men were next to me. One of them offered to put my bag on his bike. I said no, that I can carry it myself. Now there is a ploy, I thought. Put the tourist’s bag on the bike and ride off.

It was not until the younger of the two men smiled sympathetically and said something about confianza that I softened. I said “si,” and put my duffel on his bike. I recognized the word from the French confiance, which means “trust.”

And so began our 12-kilometer ride to San Diego de los Banos, where the two men lived. The sun emerged, and the skies then revealed the depth of their blue heights, with wispy clouds soaring high above. When we would reach the summit of a hill, I would sit atop the horizontal bar of the bike, “sidesaddle,” in front of the younger man, and hold onto the inner handle bar while he, wearing my backpack, would steer us both downhill, with the older man following close behind.

We’d breeze past palm trees and lush vegetation, the young man applying the brakes generously and carefully avoiding the road’s potholes, until the hill petered out. Then the three of us would hop off the bikes and walk them up to the next summit, get back on, and ride downhill again.

A strange grunting noise seemed to follow us each time we stopped. And then came a long squeal.

Poking out of the slits of two sacks tied onto each bike were two snouts, each sniffing the air as if to figure out what was going on. We were biking with a couple of hogs.

Musica,” joked the younger man as we navigated down yet another hill.

As we approached town, we passed people who looked up and stared. Sometimes, I heard laughs and “Chiiiiina.”

I am American, but I let people think I was from China during this trip to see Cuba on my own. “Chairman Mao!” some would offer generously in a eureka moment of finding common ground. “Lejos,” or “far,” people would say, in remarking how long my plane trip must have been from Asia.

I often got those comments while walking — or waiting for transport.

This is a country where you often have to stick your thumb out to get somewhere, especially when off the beaten track, because of a shortage of buses. No hitch aboard a tractor, truck, or even motorcycle sidecar prepared me, however, for the possibility of catching a ride aboard somebody’s bicycle.

When the younger man had first motioned for me to jump on his bike, I balked. How did he want me to sit, I wondered. Did he want me to straddle it?

“You’re from China,” he said, laughing. “You don’t know how?” He then stuck out his butt to demonstrate that the best way was to sit sideways.

I do know this. I would probably still be walking in the dark in that uninhabited forest, were it not for those two men. Not once did a car pass along the road that entire time.

We made it to town just before nightfall.

A man brings a spare bike home from the repair shop in Candelaria, a town on the road from San Diego de los Baños. October 1999. (Alastair Smith)

Alone in the Forest

Discovering the kindness of strangers in Cuba.

A man brings a spare bike home from the repair shop in Candelaria, a town on the road to San Diego de los Baños. October 1999. Alastair Smith

First in a two-part series. Click here for the second part.

A truck had dropped me off at a crossroads. But instead of driving away, the well-meaning driver was still trying to tell me something. Probably, “No cars are coming. You’re in the middle of nowhere. Are you crazy? What are you doing, little lady?”

I got the gist, even though I didn’t speak Spanish. I started walking, and as the distance between us grew, I could hear him yelling that maybe this was a bad idea, and he motioned for me to get back into the truck. He honked again.

But I kept on walking. No time for debate.

I passed a man wearing a suit and a felt hat, who was also headed for San Diego de los Baños, a town known for its thermal baths. He was just standing there, waiting in the middle of nowhere, as if it were a bus stop. But there was no bus stop. No car or another person in sight.

Perhaps he is still waiting there.

The man said that San Diego de los Baños was a long way off — fifteen kilometers at least. But rather than join him, standing in the countryside, with the chance that a car may never show up, I decided that if I walked fast enough, perhaps I could still reach the town by nightfall.

It was now 3:30 p.m. The sky was overcast. About three more hours of sunlight left. Remembering the distance of bygone high school cross-country races, I calculated that 3.1 miles equaled five kilometers. If I can walk three miles per hour, surely I can reach town by dark, I thought. It is doable.

So I began walking. And I walked and walked.

And not a single car came by.

The road through the countryside rose and fell, and soon, the flatness of the land gave way to a forest of pines and cedars. Not far from here, Che Guevara had moved his headquarters into a cave during the Cuban Missile Crisis. It was just me and this forest, and if I shouted, I’d spook myself.

Suddenly, two men emerged from nowhere, walking next to their bikes. Perhaps there was a house tucked away in the forest that I couldn’t see. I began to walk a little faster, but the two men were gaining on me.

Why are they walking next to their bikes? I asked myself.

My duffel was heavy, and I tried to pick up the pace, but they were getting closer.

I could totally be raped and robbed right now, I thought, clenching my teeth.

I stopped and let them overtake me. A teenager with his father on a bicycle ride, it appeared. They happened to be walking next to their bikes because the hill was on an incline.

“Hola,” they said, after I gamely raised my hand and said, “Hi.” I knew I was safe after I asked them how far San Diego de los Baños was, and the man replied with a wave of his hand into the distance, “Twelve kilometers. It’s far away.” I reassured him that I was hoping to flag a car that came this way. He nodded, and they soon passed me.

I walked a few more kilometers when I saw two other men approaching from behind — again walking with their bikes.

There is nobody around, so I am really at their mercy here, I began to think. Suppose I get killed in this forest. The Cuban police might take a week to identify my rotting body from my passport photo. My imagination was getting the better of me again; I began to wonder how much media coverage the story would get at home.

And then, the men were next to me. One of them offered to put my bag on his bike. I said no, that I can carry it myself. Now there is a ploy, I thought. Put the tourist’s bag on the bike and ride off.

It was not until the younger of the two men smiled sympathetically and said something about confianza that I softened. I said “,” and put my duffel on his bike. I recognized the word from the French confiance, which means “trust.”

And so began our twelve-kilometer ride to San Diego de los Baños, where the two men lived. The sun emerged, and the skies then revealed the depth of their blue heights, with wispy clouds soaring high above. When we would reach the summit of a hill, I would sit atop the horizontal bar of the bike, “sidesaddle,” in front of the younger man, and hold onto the inner handle bar while he, wearing my backpack, would steer us both downhill, with the older man following close behind.

We’d breeze past palm trees and lush vegetation, the young man applying the brakes generously and carefully avoiding the road’s potholes, until the hill petered out. Then the three of us would hop off the bikes and walk them up to the next summit, get back on, and ride downhill again.

A strange grunting noise seemed to follow us each time we stopped. And then came a long squeal.

Poking out of the slits of two sacks tied onto each bike were two snouts, each sniffing the air as if to figure out what was going on. We were biking with a couple of hogs.

Música,” joked the younger man as we navigated down yet another hill.

As we approached town, we passed people who looked up and stared. Sometimes, I heard laughs and “Chiiiiina.”

I am American, but I let people think I was from China during this trip to see Cuba on my own. “Chairman Mao!” some would offer generously in a eureka moment of finding common ground. “Lejos,” or “far,” people would say, in remarking how long my plane trip must have been from Asia.

I often got those comments while walking — or waiting for transport.

This is a country where you often have to stick your thumb out to get somewhere, especially when off the beaten track, because of a shortage of buses. No hitch aboard a tractor, truck, or even motorcycle sidecar prepared me, however, for the possibility of catching a ride aboard somebody’s bicycle.

When the younger man had first motioned for me to jump on his bike, I balked. How did he want me to sit, I wondered. Did he want me to straddle it?

“You’re from China,” he said, laughing. “You don’t know how?” He then stuck out his butt to demonstrate that the best way was to sit sideways.

I do know this. I would probably still be walking in the dark in that uninhabited forest, were it not for those two men. Not once did a car pass along the road that entire time.

We made it to town just before nightfall.

November 2, 1999

First in a two-part series. Click here for the second part.

 

Finding solace in cyberspace

savage.jpg

Stricken with the loneliest of illnesses, people with rare forms of cancer have built their own online communities.

Savage, a Boston Globe correspondent and ITF contributor, was awarded the Pulitzer Prize for national reporting. This story was originally published June 4, 2001.

 

“No man is an island,” the poet John Donne assures us. But on October 5, 1998, I had a hard time sharing his optimism. That was the day I found out I had LMS — leiomyosarcoma, a rare cancer of soft muscle tissue that strikes fewer than four people out of a million.

But despite those numbers, I never really felt alone. Today, people with extremely rare medical conditions around the world are banding together via email groups. It is, in every sense, a revolution in terms of patient empowerment, one that has quickly spread in the past couple of years.

Cancers like LMS are among the loneliest of illnesses. While those with more common cancers can usually find a network of others in the same city who have the same condition and who are going through the same thing, my chances of ever meeting another LMS patient seemed slim.

Only a few years ago, that isolation would have been my new reality. It certainly was for Orland Hetherington, a native of Ontario, Canada, who had LMS diagnosed in 1994. “I spent two years trying desperately to find another living soul with LMS,” Hetherington said. “I was alone with this and scared. I became somewhat obsessed with finding someone else on the planet with LMS and searching harder for more and more information.”

In March 1997, LaDonna Backmeyer, an LMS patient in Rock Island, Illinois, found Hetherington on a cancer online support list. She asked him to help her start an online discussion group specifically for LMS patients and their families and friends. From just four members then, that email group has grown to more than 560 subscribers.

For a while, I was one of them. The group instantly welcomed me to its ranks with both personal notes of understanding and a barrage of advice on treatment options and research information that helped me know more about what lay ahead during my recovery.

The group “has given information to several hundred patients since its founding,” Backmeyer said. “Some of the patients check in for a small amount of time in order to get the information they need; others find a group of welcoming friends, and they stay.”

All this from a machine

In my case, the group helped me learn about a then-experimental surgical technique developed by Dr. Steven Curley at the M.D. Anderson Cancer Center in Houston. I flew to Houston and underwent Curley's surgery, which removed all traces of tumor from my liver in December 1998. As of my last trimonthly check up, I remain cancer-free without having had to undergo chemotherapy.

In October 2000, Curley was quoted in a U.S. News & World Report article about a successful new generation of cancer-fighting techniques; because of the help of the LMS group, I found him two years before the general public learned of his existence.

There are similar email lists for about sixty other cancers. All are the offspring of a single group list started three years ago by the not-for-profit Association of Cancer Online Resources, founded by Gilles Frydman, a New York City computer entrepreneur. Frydman's wife was stricken with breast cancer and found information through an email list that helped her avoid a mastectomy.

"I started to look at how cancer patients use the Internet," Frydman said. He found that people with a variety of cancers all seemed to end up on a single, general-cancer email list. "I thought it was outrageous that only people suffering from very common forms, like breast and prostate cancer, got their own specific mailing list. So it seemed to me that what we should do was create a mailing list for every known type of cancer." Today, there are more than 125 email groups, with a total enrollment in the tens of thousands.

"Everyone comes to this support group with no idea of the vast information that is going to be shared with them," said one LMS group member, Cynthia Whitson of LaGrange, Georgia. "We all just come to selfishly help ourselves find the way through the maze of doctors, facilities, treatments, and side effects. We find that we become a part of an emotional movement to collectively find the answer to each one's question."

For many, helping others on the list find answers becomes a way to cope themselves. "I had every intention of getting off the group during this three-month break between treatments while I waited for the next scan date," Whitson said. "But you can't leave it. It becomes a part of your life, just as cancer will forever be a part of your everyday life."

Many members of these rare-cancer communities attest to this sense of involvement–becoming, in the words of Donne’s poem, not an island but a “part of the main … involved in Mankind.”

“The list, for me, has meant longer time here on Earth and incredible satisfaction in trying to help others with LMS,”

 

A bad day in Cambodia

200703_ttlg2.jpgHow traveling puts turning 30 into perspective.

I had come to Cambodia to turn 30. My twenties were not nearly as fabulous as I had planned, and I needed a dose of perspective to shake the decade off. Nowhere is perspective so easily gained as in Cambodia, and nowhere is the Cambodian trifecta of poverty, corruption, and genocide more apparent than in the capital city of Phnom Penh.

After days of trekking around the exquisite temples of Angkor Wat in the northern countryside, Phnom Penh is a shock to my system. My husband and I see kids sniffing glue on the street, white men parading around with prostitutes, and legions of homeless people sleeping and bathing on the banks of the Ton Le Sap. Phnom Penh is a city of non-governmental organization workers, not tourists, and after two days, we are quickly running out of attractions to visit. Only two essential stops are left on our trip: S-21, the prison camp where many suspected spies were tortured by the Khmer Rouge, and the killing fields, where those same prisoners were executed and buried.

When the Khmer Rouge seized power, Phnom Penh was evacuated within two days. Khmer Rouge soldiers, some as young as 11, had the French colonial city at their disposal. They turned mansions into barracks, hospitals into weapon storehouses, and schools into torture centers. One such torture center was Toul Sleng prison, also known as S-21, a former primary school in what had been a quiet, tree-lined, upper middle-class suburb. Today, the S-21 complex is a museum. The surrounding neighborhood is full of barbed wire, stray dogs, and trash-littered gravel roads. It seems sketchy even for a city as lawless as Phnom Penh.

Our guide at S-21 is a quiet woman in her late thirties who lost most of her family during the reign of the Khmer Rouge. “First they killed my father,” she says, echoing the title of Luang Ung’s haunting memoir of growing up under the regime. The rest of her family was split up and sent to camps in rural areas at opposite ends of the country, she tells us. The guide and her mother were transferred to a camp near the Vietnamese border; they survived by walking to Vietnam in the middle of the night. The guide was nine at the time. She never saw her siblings again.

S-21 is a series of four four-story buildings, which, though worn and weather-stained, give no outward clues to the torture endured by 20,000 prisoners inside. One step into the first building, however, and we are immediately confronted with its grim history. The former classrooms have been divided up into cells, each with a rusty, sagging bed frame. Next to each bed lie cattle prods and other rusty instruments of torture. Fuzzy, blown-up black-and-white photographs reveal how each room looked when the Vietnamese army arrived to overthrow the Khmer Rouge: torched corpses chained to the bed frames, bodies unrecognizable. Wild pigs and rats had already eaten many of the bodies.

Our guide is surrounded by an aura of profound sorrow. She walks into each room, delivers a sentence or two about what happened there, and immediately turns and walks out into the open-air corridor to wait for us. It is as if she cannot handle an extra second inside the walls.

In one cell, the biggest moth I have ever seen flutters about. Its wingspan must be 12 inches, and its brown markings match the dust and rust inside S-21. The moth is eerily beautiful, the product of a warped ecosystem in which pigs scavenge for human flesh and children tote machine guns. I imagine the impossible: that this moth has been around for decades, flitting about this room, quietly watching the transformation from school to torture cell to tourist attraction. The moth reminds me that life goes on, even in the face of insanity.

Our guide leads us to the next building, where hundreds more black-and-white photos of prisoners are displayed. Like the Nazis, the Khmer Rouge kept meticulous records, photographing each prisoner with a numbered plaque upon arrival at S-21. Looking at these photos feels like staring into the eyes of ghosts, each staring back, aware of his or her rapidly approaching death. Out of the 20,000 people housed at S-21, only seven survived.

In the next building, we view an exhibit of present-day photographs of and interviews with former Khmer Rouge soldiers, most of whom are now middle-aged farmers, eking out an existence in the countryside. None of them express regret about their involvement with the Khmer Rouge. Many feel like victims themselves, having been recruited as child soldiers. No one, including these former soldiers, has ever been tried for the atrocities that took place under the regime.

When I ask my guide how she feels about the movement to bring former Khmer Rouge officers to justice, she looks at me with sad, scared eyes and says, “It’s very difficult to talk about politics in my country.” Apparently, more than two decades after the Khmer Rouge, the walls at S-21 still have ears.

Leaving S-21, we negotiate with a tuk-tuk driver to take us to one of the killing fields — former rice paddies where political prisoners were executed and buried in shallow mass graves. The killing fields are now a memorial, but active farms surround them on three sides. Barbed wire demarcates the farmland from the graves. Young boys stand behind the barbed wire, offering to pose as prisoners for the equivalent of $1. In Cambodia, where the average monthly salary is about $17, that is a tremendous sum of money. These kids — some as young as seven — are already master capitalists. Some tourists take them up on the offer, getting the perfect shot of Cambodian boys standing behind barbed wire.

 

Hair to dye for

200703_grayhair.jpg A quirky look at the first gray hair.

She was a wise woman.

Heads turned as she pushed her metal shopping cart down supermarket aisles. Strangers at stop lights turned to see if she was wearing a fake attachable halo like the ones children might don with their Halloween angel costumes. Even the kindergarteners she taught noticed — and gave her silent reverent bows as she walked by.

The wise woman’s mane of pure, majestic white hair was unsettling.

People rarely dared to speak openly about it.

Women over 30 were the only ones who blurted out their fears in little bursts of self-conscious comments.

“I wish my hair were striking white. Not this awful, lifeless ash,” they said mournfully, always lifting a portion of their own hair and letting it fall back to their scalps like washed-out pieces of dead seaweed.

“You’re so lucky. Once you dye your hair, you can’t stop. But I guess with hair like yours, you’ve never had to dye it, have you?”

The wise woman would shake her head silently. Never.

“I can’t believe that. I remember when I got my first gray hair, I was devastated.”

She knew that even if she tried to say something to help them acknowledge their inner light, they would not hear it.

So she stayed quiet, as the women, wrapped up in the tragedy of aging, prattled on about their fear of becoming obsolete, of losing their husbands to younger women with thick, vibrant, undyed hair that tumbled down their backs.

“Just like the ones in the Pantene Pro-V commercials — you know which ones I mean?”

They sputtered about feeling threatened by airbrushed TV goddesses, whose sexiness and confidence seemed to flow into their bouncy hair.

The women would eventually finish their monologues and drift away, muttering about models and the latest haircuts on “Grey’s Anatomy.”

Never once really seeing the woman of wisdom’s luminous white hair.

If they had looked a little longer, they might have glimpsed the icy tips of the highest mountains piercing crystal blue skies.

If they had stilled their minds for a moment, they’d catch a soft aura and glimpse Buddha sitting under the Bodhi tree and awakening.

They might feel the gentle warmth of a church candle between their palms. Or a pool of tranquility deep inside their bellies, like an untouched lake in a forgotten grove.

Instead, the women walked on without looking back.

Without even a silent kindergarten bow.

 

On vintage handkerchiefs

Impressions of a grandmother.

Toward the end of her life, my grandmother went shopping for birthday and holiday gifts in her own apartment. Some years I received pantyhose; others, a milk glass vase or a brass alligator nutcracker.

Although I never used the last present I received from her, I kept them: three pristine, precisely creased, embroidered muslin handkerchiefs. They have survived college in one state, graduate school in another, and the arrival of my own family in a third. Aside from the figurative ties they give me to my grandmother, whose nose I have inherited, I have always considered them valuable.

But value has a different meaning when it comes to eBay.

One day I was browsing its “clothing, shoes and accessories: vintage” category when I found a listing for an inordinate amount of women’s handkerchiefs. In fact, 238 lots were for sale that very week. The cheapest, a set of four holly-embroidered Christmas hankies, was going for 99 cents. The most expensive, an assortment of 154 floral “everyday ladies” hankies, was on sale for under $60. At 38 cents a pop each, these weren’t exactly Caspian caviar.

On a visceral level, I was a bit disappointed in these anonymous sellers. I know that many dealers bought these products from estate sales and have no attachment to them other than the scant money they paid. But other sellers are daughters and granddaughters who may have cleaned out closets after the owner’s final stroke or battle with cancer. Isn’t the hawking of these long-held possessions akin to the selling of memories?

And at rock-bottom prices, no less.

Sentiment aside, I have no practical use for these tiny patches of gauze, trimmed with faded cross-stitch and permanently scarred with folds. What does one do with such items? Turn them into appliqué lampshades? They’re more suitable for polishing the furniture than they are for clearing the sinuses.

But thanks to my robust love for fiction and a vivid imagination — something else I inherited from Grandma — I can visualize one of these lace-and-linen confections tucked up her three-quarter sleeve.

Each brings back a piece of her. The off-white one with the scalloped edges reminds me that Grandma Min pickled the neighborhood’s best herring in sour cream sauce, heavy on the onions the way my dad and I like it. The eggshell one, with the crocheted border, takes me back to her fragmented square of a linoleum kitchen table, where I sat in my nightgown, watching as she cooked breakfast. She always salted the eggs before scrambling them rather than after, making them taste so much better. The handkerchief that was imported from Europe — and still in its original packaging — takes me to my grandmother's girlhood during World War I. She escaped in a covered wagon driven by her mother across the continent to a ship that would take them to America.

Although in the final decade of her life, Grandma Min blew into disposable tissues like the rest of us, and these vintage handkerchiefs are no longer intended for use, their personal history will always be nose-worthy.

Chances are, my own grandkids are going to receive them, and while they may be initially puzzled, perhaps in the end, they will discern the handkerchiefs’ true value.

 

One Piece at a Time

Stitching the past together.

QuiltFor Hanukkah this year I may have received the most meaningful gift I’ve ever been given. My family isn’t all that big on the gift-giving associated with that time of year. Like many people, it’s more about the time we spend together as a family than the price tags or the presents. We get simple things, like Dutch chocolate letters, an old tradition from my dad; or useful things, like teacups or socks or warm sweaters. And to be honest, this year I didn’t even want a gift. Everyone was happy and healthy, and that’s all that mattered.

However, my mom surprised me this year. When I was in high school she taught me how to knit, and I had spent many years slowly knitting colored squares with the intention of one day creating a quilt. She started making squares as well, and when I went away to university we stored the squares and the yarn in our guest room. Unbeknownst to me, my mom had taken on the task of sewing together not only squares that both she and I had made but added those to squares my dad’s mother had made as well: a three-generation quilt.

I was completely stunned. I knew that my mom must have spent countless hours painstakingly arranging all the squares and sewing them together. Her inclusion of pieces from my oma (“grandmother” in Dutch) gives the quilt an added meaning. My oma passed away when I was fourteen, just as I was beginning to know her. She and her husband, who died when I was three, were both Holocaust survivors. I feel as if I’ve spent the rest of my life searching for pieces of them, tying stories, pictures, and memories together in an attempt to hold on to her.

I know a few people who have their grandparent’s pocket watch or a piece of jewelry belonging to a great-great relative. Or maybe it’s an old photograph that they carry in their wallet. These objects remain almost invincible to time, preserving the memories of their past owners and keeping them alive.

Aside from objects, stories that are passed from generation to generation also keep memories from dying. Also, sometimes people name their children after those who have passed on as a way to give honor to their memory.

As for my grandmother, I try to weave the stories my family has told me about her with my own memories as well as physical objects. Before she died, a Holocaust museum in Florida interviewed my grandmother. I listened to the tapes, searching for answers into who she was. She described her experiences about being in a line that separated the people who will live from the people who will die, and about where they slept, ate, and cried. Her spirit and determination comes through on those tapes so vividly, it’s almost as if she’s next to me and we’re having this intimate conversation. I want and need to keep her memory alive for my children and their children too.

In the meantime, the quilt lays on my bed, protecting me from the unknown secrets in the night and keeping me warm. My squares, which are sometimes slightly misshapen or hampered by mistakes, intertwine with those of my mom, pieces that are uniform, brightly colored, and cheerful. My eyes follow the stitches to my oma’s squares, neat, tightly bound, and of deep, rich shades of brown and orange that were popular in the seventies. And maybe it sounds silly, but I know she’s there with me. It’s as if her soul shines through the yarn. Perhaps physical objects are our most powerful relics after all. Either way, they certainly keep our bodies and our hearts warm.

 

One piece at a time

Stitching the past together.

For Chanukkah this year I may have received the most meaningful gift I’ve ever been given. My family isn’t all that big on the gift-giving associated with that time of year. Like many people, it’s more about the time we spend together as a family than the price tags or the presents. We get simple things, like Dutch chocolate letters, an old tradition from my dad; or useful things, like teacups or socks or warm sweaters. And to be honest, this year I didn’t even want a gift. Everyone was happy and healthy, and that’s all that mattered.

However, my mom surprised me this year. When I was in high school she taught me how to knit, and I had spent many years slowly knitting colored squares with the intention of one day creating a quilt. She started making squares as well, and when I went away to university we stored the squares and the yarn in our guest room. Unbeknownst to me, my mom had taken on the task of sewing together not only squares that both she and I had made but added those to squares my dad’s mother had made as well: a three-generation quilt.

I was completely stunned. I knew that my mom must have spent countless hours painstakingly arranging all the squares and sewing them together. Her inclusion of pieces from my oma (“grandmother” in Dutch) gives the quilt an added meaning. My oma passed away when I was 14, just as I was beginning to know her. She and her husband, who died when I was 3, were both Holocaust survivors. I feel as if I’ve spent the rest of my life searching for pieces of them, tying stories, pictures, and memories together in an attempt to hold onto her.

I know a few people who have their grandparent’s pocket watch or a piece of jewelry belonging to a great-great relative. Or maybe it’s an old photograph that they carry in their wallet. These objects remain almost invincible to time, preserving the memories of their past owners and keeping them alive.

Aside from objects, stories that are passed from generation to generation also keep memories from dying. Also, sometimes people name their children after those who have passed on as a way to give honor to their memory.

As for my grandmother, I try to weave the stories my family has told me about her with my own memories as well as physical objects. Before she died, a Holocaust museum in Florida interviewed my grandmother. I listened to the tapes, searching for answers into who she was. She described her experiences about being in a line that separated the people who will live from the people who will die, and about where they slept, ate, and cried. Her spirit and determination comes through on those tapes so vividly, it’s almost as if she’s next to me and we’re having this intimate conversation. I want and need to keep her memory alive for my children and their children too.

In the meantime, the quilt lays on my bed, protecting me from the unknown secrets in the night and keeping me warm. My squares, which are sometimes slightly misshapen or hampered by mistakes, intertwine with those of my mom, pieces that are uniform, brightly colored, and cheerful. My eyes follow the stitches to my oma’s squares, neat, tightly bound, and of deep, rich shades of brown and orange that were popular in the ’70s. And maybe it sounds silly, but I know she’s there with me. It’s as if her soul shines through the yarn. Perhaps physical objects are our most powerful relics after all. Either way, they certainly keep our bodies and our hearts warm.