Features

 

One diagnosis doesn’t fit all

Thousands of parents grapple with their children’s ADHD. But as I sought help for my son, Grant, I sensed that the usual solutions — and the ADHD label — were inadequate.

Editor’s note: Last month InTheFray featured a visual essay entitled A good day for Grant,” which illuminated how seven-year-old Grant Lanham copes with Attention Deficit Hyperactivity Disorder (ADHD). Since Sun-A Kim photographed Lanham and interviewed his parents and teachers, another chapter has been added to his story. Recently diagnosed with Asperger’s Disorder (Educational Autism), Grant, his parents, teachers, and classmates can now better explain his behavior, which often couldn’t be easily explained in terms of ADHD symptoms or alleviated with ADHD medication.

For instance, one photo in Kim’s essay (above) shows Grant putting his fingers in his ears to block out noise in the classroom. Before, Grant’s sensitivity to noise seemed to be a byproduct of his ADHD. But now the people in his life know better: Loud noises, which so frequently set Grant off at school and home, frequently stir up or scare people with Asperger’s Disorder. Equipped with this knowledge — and Grant’s new medical label — Grant’s parents and teachers are learning how to better control his environment to minimize the discomfort Grant experiences.

Geoff Lanham, Grant’s father and the coordinator for Project LIFE, shares his story, which was originally published in The GUIDE newsletter (Project LIFE, Columbia, Missouri, Autumn 2004).

The diagnosis didn’t match the behavior.

For a long time, I knew in my head and in my heart that there was something different about my youngest son, Grant. While the symptoms of ADHD were present, there were other behaviors that often alarmed me.

Grant began reading at the age of three. He was fascinated with dinosaurs and could tell you all about the diplodocus and triceratops. Grant often asked me for definitions of words that I had to look up in the dictionary. He was able to compute math problems that most six-year-old children couldn’t touch. Grant’s teachers always complimented him on his intelligence.

His conduct at home wasn’t really worrisome. Grant never got into much trouble. Although he always needed prompting to eat or to bathe, or do common household chores, he wasn’t much different than my other children.

Then why was there a problem?

At first I thought it was the divorce and new home — changes that would account for any six-year-old child’s behavioral problems. We also changed Grant’s ADHD medication — that itself was a living hell. When the dust settled from the divorce and the move, however, he was still acting out at school. On occasion, Grant had trouble with adults, but most of the aggression was directed toward his classmates. This behavior was unacceptable — to me and to his teachers.

When Grant was suspended from school for a lunchroom incident, I had the opportunity to discuss his problems with the vice-principal. After a long talk, we agreed that he needed further psychological testing. She recommended referral to the public school autism specialist.

Once again, we faced the arduous task of filling out paperwork. Both his mother and I answered questionnaires. For over two hours, we were questioned by the autism specialist. His teachers were questioned. No stone was left unturned.

Finally the day arrived. We found out why Grant behaved the way he did: He was diagnosed with Asperger’s Disorder (Educational Autism).

Having read about this disorder when my nephew was diagnosed with autism, I recognized many of the characteristics in my son. Back then, I hated to put another label on Grant, and discarded the notion that he might have autism.

Now I know better.

New labels, new solutions

Although Grant has another label attached to his resume, this one has been a relief. With insight into Asperger’s Disorder, we can help my son by anticipating problematic situations. Grant’s troubles seemed to happen in very noisy circumstances — in the gym or during recess — places where the decibel level makes the hardest of hearing plug their ears. The lunchroom was always difficult. Not only was noise bothersome, but certain smells also set him off. Grant would push or shove or throw things at fellow students. When I asked him why he did these things, Grant just said, “I don’t know Dad; I really don’t know.”

Now I know, and it’s getting easier to adapt his environment or to anticipate a challenge. For instance, children with Asperger’s Disorder are very sensitive to sound. Grant will cover his ears and get in the fetal position if a fire engine is within a couple of blocks — even when I can barely hear the fire engine. I cannot run the vacuum cleaner when Grant is in the house because he acts as if someone is running fingers on a chalkboard, and he screams as if in pain.

Certain smells set Grant off as well. Garlic, for instance.

Grant eats only particular foods. Try as I might to introduce new food, he always prefers the same old standby — hot dogs, yogurt, and chocolate milk. For a while, all he would eat for breakfast was chocolate chipped muffins. So I made them every morning. I’ve learned to choose my battles, and as long as Grant is eating, it’s better than fixing a meal that will sit on the dinner table, get cold, and end up in the garbage.

My son has discovered the wonderful world of Nintendo Gameboy. While it provides countless hours of entertainment (and a respite for me), I am weaning him from the toy. Grant loves to read, and we try to read whenever possible.

I play a game with him called “Let’s see who can stare the other down the longest.”  Children with Asperger’s have a difficult time maintaining eye contact; their eyes wander back and forth. With a lot of effort — the “stare down” game — we are making progress.

Children with Asperger’s often take things literally. If you say it is “raining cats and dogs,” don’t be surprised if a child looks at you in a puzzled manner. To him, it is just raining; there are no cats and dogs falling from the sky!

At school, we’ve adapted Grant’s routine. For instance, he has lunch in the assistant principal’s office. He has one recess instead of two. He is given advance warning of a fire drill. These simple steps improve Grant’s ability to get along with his peers.

As parents, we need to follow our instincts. We know what makes our children tick. I know that my son will struggle in the classroom. I know that he will shine as well. Grant has been fortunate. His teachers perceived his strengths and always encouraged him to be the best student possible. They knew in their hearts and minds that something was different about him. Together, we finally figured it out.

To quote Brenda Smith Miles, “Life is my son’s classroom and there is no summer break.”

STORY INDEX>

TOPICS> ASPERGER’S DISORDER >

Learn more about Asperger’s Disorder
URL: http://www.aspergers.com

URL: http://www.baltimorepsych.com/aspergers.htm

 

Our sons

Contrary to what some critics are saying, boys raised by feminists are growing up just fine.

(Illustration by Joe Sun)

Obscenity alert! Somebody call the Family Research Council! Dial up the Eagle Forum. Somebody step up to the plate on the side of decency. I thought when Virgin Atlantic Airways introduced the company’s newest VIP perk, urinals shaped like women’s open mouths, great numbers of organizations would be offended. But only the National Organization for Women stepped up.

Offended doesn’t even come close to describing what I felt when presented with the idea of young boys following their fathers into the men’s room to take a leak in a woman’s mouth. And it started me thinking about how often I’ve heard the theory that women’s rights advocates are ruining the country’s boys: the Feminization of Freddy, that sort of thing. Yet it took a feminist organization, NOW, to keep our sons and grandsons from being subjected to participatory misogynistic perversion.

Both my son, Adam Cox, and my son-in-law, Jake Nath, were disgusted by the Virgin Atlantic urinal. Both young men were raised by feminists, and it got me thinking about feminists and their sons.

I am from a continuum of feminists, the fifth of five daughters raised by a Southwest Kansas farmer and a teacher who were both avid women’s rights advocates. My mother came by her feminism naturally, and it was in part her strong political views that so attracted my father. My maternal grandmother worked for suffrage as a young woman, after moving west by covered wagon in 1891.

In 1912, when my grandmother was a 33 year-old, the Kansas legislature made their state the eighth to approve full women’s suffrage. My mother was only six years old on that day, but she remembered it well. The feeling in her farm home was less celebratory than resolved when grandfather brought news of the way Kansas legislators voted. “Well, of course, they did,” my mother recalled her mother announcing.

Frontier theorists would no doubt say that the rural West pioneered in women’s rights as a practical matter, a natural distancing from English society and the beginnings of America defining herself. I, too, see feminism as a practical matter — a meat and potatoes issue. I fear we live in a time when some are putting great effort, time and money behind redefining this country and what made it great, strong women included.

My grandmother raised nine children: teachers, merchants, farmers and soldiers. One of her sons flew 85 missions over enemy territory during World War II. Another son, also a pilot, didn’t make it home. Oh that my God-fearing suffragette grandmother, Sylvia Cave Johnson, was still alive and available for cable television. Woe be unto the self-righteous, Stepford-shill, who accused her of being incapable of raising sons.

In the past several years we’ve seen a glut of magazine articles, talk shows and books like The War on Boys: How Misguided Feminism is Harming Our Boys  and The Decline of Males demonizing a simple term: feminism. How silly. Feminists are people who believe women deserve the same opportunities and compensation as men.

The anti-feminist deluge seemed to fall even harder in the wake of the Littleton High School tragedy, where on April 20, 1999, two teenagers committed the largest mass school killing in U.S. history. Everyone agreed that something was going wrong with today’s society, and many pundits placed blame squarely at feminists’ doors. Time after time I watched, listened or read that we activists were to blame for a breakdown in family values in general, and for the dehumanization of American boys in particular. Nevermind that none of the young men involved in school shootings, so-called “wildings” or other violent acts so widely publicized seemed to have been raised by feminists.

I contend it is just the opposite, that feminists gave their children strong values. My parents not only encouraged but also expected their daughters to see themselves as equal with men, to work to their potential and to facilitate others to do the same. And I believe the great majority of women’s rights activists of my generation, the meat and potatoes feminists, single or married, have done a spectacular job of raising their sons, sons who view the world far differently than those raised in strictly patriarchal households.  

There are lessons I believe we imparted both in word and action that will affect great change in society as our sons take their places in today’s workforce. We taught our daughters the same values, but we always knew that any significant change required males also working against prejudice and intolerance.

I believe feminists by their very nature imparted questioning minds to their sons, encouraging them to question stereotypes including those existing within our school system: jocks, nerds, freaks and snobs. They learned from us that name-calling is a critical part of alienation. We taught them to appreciate differences, not disdain them, to neither be nor seek victims.

We taught them to be discerning, to carefully evaluate influences, ranging from peer pressure to media input.

For feminists active in the business and political community, sons learned to interact with a myriad of individuals, from the powerful to the disenfranchised. They carried those experiences with them, and, I believe, profited as adults. I also think we imparted a sense of purpose in our sons, the knowledge that every life is part of something bigger and does make a difference.

Children of feminists know that every stand they take may not be popular. They may be subjected to ridicule or contempt as a result of their beliefs. But through the examples of their mothers, they know a worthy stand is worth the price.  

I can’t even imagine what my feminist grandmother would have thought had she lived to see a picture of a urinal shaped like a woman’s open mouth. But she wouldn’t have been surprised that it was feminists who got the project flushed.

STORY INDEX>

ORGANIZATIONS >

National Organization of Women
URL: http://www.now.org

Family Research Council
URL: http://www.frc.org

Eagle Forum
URL: http://www.eagleforum.org

 

Genocide’s deadly residue (part two)

2004 Best of Identify (runner-up)

The international community looked the other way while more than 800,000 people were murdered in Rwanda 10 years ago. Now, justice remains elusive and the harsh aftermath of orphans and HIV, psychological scars and physical scarcity threaten to prolong the killing.

Go to part one

Building solidarity among women

Women’s organizations may offer the best chance for Rwanda’s future. Avega Agahozo has a project in the southern city of Butare, involving orphans, and both genocide widows and the wives of genocidaires  who make traditional baskets to sell at craft shops. Countless other associations have similar projects targeting rural women.

I met Laurence Mbarishimana, a female farmer in her 30s, on a steep roadside in Ruhengeri. She said she has benefited from an association called Twisungane, which brings together Tutsi and Hutu widows and helps them with agriculture. “Before the genocide I must admit I was very ignorant,” she said quietly. “Before I used to harvest 30 kilos of beans, but now I harvest 50 kilos.” Mbarishimana also thought that the two groups could coexist: “There is no reason that people should not live together, especially if one group is willing to ask forgiveness.”

Rwanda’s violent history may even provide common ground for women. “Now Rwandan women know that all women can be raped,” said Marie Immaculee Ingabire of Pro Femmes. “We have to build solidarity between us because we are targets in the same way in a conflict situation.”

After the parliamentary elections last fall, Rwanda now boasts the highest percentage of women in parliament of any country in the world (48.4 percent). Some Rwandan women are still skeptical that this will make a difference in their own daily lives.

Agnes Musabyimana, 33, is another woman farmer in Ruhengeri. Clutching a leather-bound Bible as she left a prayer meeting, she told me that in her village, women have unhappy marriages and live hard lives. She said that there are an equal number of male and female leaders, but there hasn’t been any change. “They’re not working for our benefit,” she said flatly. “It’s for their own benefit.”

Nevertheless, Ingabire felt that the recently elected women in parliament would be subject to pressure from their constituents. “This is very important for us, because now even these women who are in parliament, if they are not able to make changes, we can change them,” she said.

Moreover, she said the fact that so many of those left to rebuild the country in the wake of the genocide were women has been important in changing traditional social attitudes.

“I don’t know that genocide can have a good side, but I think that because of the genocide, the mentality now has changed in this country. Because Rwandans saw that now women are able to do something, are able to build the country. So they have to give them the opportunity,” Ingabire said.

In the end, many survivors are not sure that the much-vaunted reconciliation is likely or even desirable right now, but they hold it out as a possibility for the future. Aurea Kayiganwa of Avega Agehozo said tolerance and justice must come first. “It’s very hard for us, to lose your family and be asked to make unity and reconciliation. We can’t imagine that, but we do it for our children.”

Lake Kivu, on Rwanda’s western border.

Telling the world

On a hill above Kibuye, the church of Home St. Jean overlooks the luxuriant green shores of Lake Kivu. Its stonework and beautiful stained glass windows are unusual for a church in this part of the world. It is such an idyllic place that it is difficult to believe the horrors that happened here. But directly in front of the church is something it shares with so many other Rwandan churches: a genocide memorial. The memorial is simple, several concrete tombs with new wreaths on them, and a sign saying that several thousand people were killed here in 1994. I saw the church and memorial before I met Mbezuanda, so I had no idea of the life and death struggle that had gone on inside.

When I was done interviewing Mbezuanda, we stepped out of her house and took photos. As we posed I put my arm around her shoulder. I didn’t realize that such a simple gesture would mean so much to her. She grinned and clasped my hand. We walked down the steep, red dirt path to the car, with her holding my hand the entire way. I was used to seeing women hold hands with each other in Africa, so I didn’t feel strange. As we got to the bottom of the hill, Mbezuanda was still smiling and she remarked that holding hands with me reminded her of her husband, and how they used to hold hands.

I realized at that moment that Mbezuanda’s isolation was not merely social, but physical. The immense stigma of being HIV positive, added to the strange position of being a living reminder of events that many would rather not think of, meant that Mbezuanda probably had little physical contact with anyone but her orphans. It was a harsh and unexpected situation for a woman living in one of the world’s most densely populated countries.

On my way back to Kigali, I passed the church again. After hearing Mbezuanda’s harrowing account, it now looked sinister. Though Mbezuanda’s husband and children were in those tombs, she was not. Instead, she was telling the world about what had happened to her, and however difficult the task, it meant that the genocide did not succeed.

STORY INDEX

MARKETPLACE >
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The Graves Are Not Yet Full: Race, Tribe, and Power in the Heart of Africa
by Bill Berkeley.
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We Wish to Inform You that Tomorrow we will be Killed with Our Families
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When Victims Become Killers: Colonialism, Nativism, and the Genocide in Rwanda
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A People Betrayed: The Role of the West in Rwanda’s Genocide
by Linda Melvern.
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A Problem from Hell: America and the Age of Genocide
by Samantha Power.
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The Rwanda Crisis: History of a Genocide
by Gerard Prunier.
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Aiding Violence: The Development Enterprise in Rwanda
by Peter Uvin.
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ORGANIZATIONS >

Frontline: The Triumph of Evil
URL: http://www.pbs.org/wgbh/pages/frontline/shows/evil/

Human Rights Watch 1999 Report: Leave None to Tell the Story
URL: http://www.hrw.org/reports/1999/rwanda/

Rwanda 10
URL: http://www.rwanda10.org

The Rwanda Project: Through the Eyes of Children
URL: http://www.rwandaproject.org

The Survivors Fund
URL: http://www.survivors-fund.org

 

Genocide’s deadly residue

2004 Best of Identify (runner-up)

The international community looked the other way while more than 800,000 people were murdered in Rwanda 10 years ago. Now, justice remains elusive and the harsh aftermath of orphans and HIV, psychological scars and physical scarcity threaten to prolong the killing.

Skulls at Nyamata genocide memorial.

Mbezuanda (who only gave her first name) is a tall, frail woman who often holds her jaw because of a toothache. She is one of the few Tutsis in the small town of Kibuye, who survived the Rwandan genocide 10 years ago. But as with so many other survivors of the massacres, her story does not end happily.

Now, at age 47, she lives in a mud-and-wattle shack with a dirt floor, caring for seven orphans. She has HIV and is getting sicker by the day. Unable to work, she is often short of money to buy food, and the children pick wild guavas and passion fruits to sell in the market. Through an organization that helps genocide widows, she receives free medicines to treat her secondary infections, although they cannot yet afford to give her anti-retrovirals to treat her HIV.

In the end, Mbezuanda regrets having survived.

“When I sit down and think about what happened,” she says unhappily, “I think the best solution is suicide.”

A history of holocaust

Rwanda erupted onto the international scene in April 1994 with a lightning-quick genocide that observers estimate killed tens of thousands of people in the first five days. In the West, the conflict was initially thought to be a civil war, but it soon became clear that it was an attempt by the Hutu majority to eliminate the Tutsi minority. Though media outlets have often described the violence as tribal, scholars to this day disagree about the origins of the Tutsis and Hutus and whether or not they constitute different tribal or ethnic groups, especially since they share the same language, customs, and religion.

The two categories of people became solidified in the 1930s, when Rwanda was under Belgian control and the colonial government issued each Rwandan an identity card specifying his or her “ethnicity.” The Belgians also used Tutsis as overseers of exploited Hutu plantation workers, thereby fueling a lasting sense of resentment among Hutus, and a growing Hutu Power movement. When the country gained independence in 1962, it became a Hutu dictatorship. Every decade or so there were outbreaks of violence, mostly against Tutsis. These episodes were often driven by events in neighboring Burundi, which was dominated by a harsh Tutsi government.

By the late 1980s, there were over 1 million Rwandan Tutsis in exile, many of them in Zaire and Uganda. In late 1990, the Rwandan Patriotic Front (RPF) — an army of Rwandan exiles made up of mostly Tutsi, but including some Hutus who grew up in Uganda and opposed the Rwandan status quo — invaded Rwanda from Uganda.

A civil war ensued, and over the next few years, anti-Tutsi rhetoric escalated while killings of Tutsis became increasingly common. In August 1993, President Juvenal Habyarimana signed a peace agreement with the RPF, establishing a plan for a transitional government and eventual multiparty elections. A small U.N. peacekeeping force was deployed in the country.

But the wobbly peace did not hold. On the night of April 6, 1994, a plane carrying Habyarimana was shot down over Kigali, the Rwandan capital. It is still not known who shot down the plane, but many scholars believe the perpetrators were probably disgruntled extremist elements within the Habyarimana government. In any case, radio propaganda advocating extermination of Tutsis had intensified through the early days of April, with broadcasts warning of big events to happen on the 7th or 8th. Within an hour of the plane’s destruction, roadblocks were set up in and around Kigali, and Tutsis attempting to flee were slaughtered.

The genocide continued for three months. Many of the killings were carried out by the ruthless Hutu militias known as the Interahamwe. Armed with machetes, spears and occasionally guns, they went door to door, looking for Tutsis or Tutsi sympathizers. In some places, they were given lists of Tutsis by local mayors or politicians, and set out each day to make sure each and every one was exterminated.

The small and under-equipped U.N. peacekeeping force was unable to help, and Western governments were reluctant to intervene in what they insisted was a civil war. Finally, a French peacekeeping force arrived in late June. By then, most of the killings had already taken place. By early July, the RPF gained control of Kigali. The old regime fled, taking close to a million Hutu refugees with it into Zaire. A new government consisting of the RPF and some Hutu opposition figures was sworn in on July 19, 1994.

The generally accepted estimate of the death toll is 800,000 people, including Tutsis and moderate Hutus who opposed the genocide. This April, however, the Rwandan government said that 937,000 bodies have been identified, and more are expected to be found.

I went to Rwanda in April for the 10th anniversary of the genocide, looking for evidence of reconciliation. I had read some hopeful articles about development projects involving Hutu and Tutsi widows rebuilding their shattered communities, but I found much more rebuilding than actual reconciliation.

The government of Paul Kagame — first elected in 2000 and re-elected in September 2003 — has attempted to eliminate old divisions and create a new national identity, an idea many Rwandans have responded to positively. But national identity and national reconciliation are two different things. And many people question whether it is appropriate to talk of reconciliation when so many of the killers are unremorseful, and the survivors — particularly women — are languishing in poverty and hopelessness. The reality in Rwanda today is that people live together, mostly in peace, because there is simply no other choice.

Inside Nyamata church. The altar still bears a cloth with bloodstains from the killings. The bones behind the altar were to be reburied in a ceremony to mark the 10th anniversary of the genocide.

Haunting memories

I traveled to Kibuye, in western Rwanda, to find survivors and possibly perpetrators, because I had read that 90 percent of the Tutsis in this little town were killed. Mbezuanda was walking along the main road as I was negotiating with a local woman to rent a car and driver for the day. When she heard I was interested in speaking with survivors, the businesswoman brought Mbezuanda over.

Mbezuanda was known in the town, it seemed, for having given testimony to the International Criminal Tribunal for Rwanda. Because she did not want strangers to hear what happened to her, and said that she was terrified of crowds because of what they did in 1994, we drove around for nearly an hour looking for safe places, and finally, ended up at Mbezuanda’s house.

My translator and I sat on wooden benches in Mbezuanda’s hut. It was dark inside, lit only by the open doorway. Pages torn from newspapers, mostly ads for prayer ceremonies featuring born-again Christian preachers, adorned the earthen walls. She introduced her oldest orphan, a young woman who appeared to be in her late teens and was taking care of the other children. On Mbezuanda’s instructions, the young woman lifted up her batik skirt to show us a huge wound stretching the length of her thigh. The orphan was raped and attacked with a spear during the genocide, Mbezuanda said.

Mbezuanda said that she and her family had first sought refuge in the town stadium, where the local authorities told them to gather in the first few days after the plane crash. When the Interahamwe attacked the crowds in full view of those authorities, Mbezuanda and her husband ran to the church of Home St. Jean, a few kilometers up the hill from the stadium. But Home St. Jean was not safe either. The Interahamwe threw tear gas and grenades into the church, and Mbezuanda’s husband and twin children were killed. Hours later, she found herself lying under the bodies of others who, like them, had hoped for safety in the church.

As she tells it, Bible still in hand, Mbezuanda crawled out, accompanied by a young girl. But outside the church they ran into a group of armed men. They raped and brutally murdered the girl while Mbezuanda got away by paying them off. However, there was another group just behind them, and they tortured and gang-raped her too.

Left and then threatened by a new group of armed Hutu men, Mbezuanda was rescued by a neighbor, an old Hutu woman, who told the attackers that she was already dead. The woman hid Mbezuanda and several other Tutsis in a trench at the back of her banana plantation. When the Interahamwe came looking for Mbezuanda, following rumors she wasn’t dead, she and the others were forced to spend three days in the latrine pit. Finally, the RPF took control of the town and Mbezuanda emerged from her hiding place.

The interior of Ntarma church. This church, now a memorial, was left largely as it was found after the massacre.

The emptiness and the echo

The outlook for Mbezuanda and many others of the estimated 400,000 Tutsi survivors in Rwanda is bleak. Though the country of just over 8 million has been physically rebuilt, and more than 500,000 exiles have returned, survivors’ lives are fraught with difficulties. Not surprisingly, women — who make up a majority of the post-war population — have borne the heaviest burden. Many complain that they are not receiving any aid, even though foreign development organizations and donors are active in Rwanda.

Poverty especially afflicts women survivors. In a country where the average per capita annual income is just $252, survivors such as Mbezuanda struggle to care for orphaned children.

“A lot of them live in housing that is held together literally by a nail, so they don’t know what will happen to their children once they’re gone, and that’s the greatest worry,” said Elizabeth Onyango, program coordinator of African Rights, a human rights organization that has been collecting testimonies about the genocide and its aftermath.

Moreover, the thousands of children born of rape have grown and are making greater financial demands on the family, requiring school materials and clothing. Worse yet, Onyongo added, they are asking about their fathers. For those saved the burden of mouths to feed, loneliness and emotional distress are common.

“You have people who had eight children and they have nothing now,” said Onyango, “just the emptiness and the echo.”

Mamerthe Karuhimbi, another survivor, struggles with the void that the genocide left in her life. She was 19 in 1994, and lost all of her family except for her mother. She remains traumatized by her memories of horrible killings and of her own rape; like most survivors, she has not received psychological counseling. A decade later, she has a boyfriend, but has never married and has no children of her own — unusual for a Rwandan woman who is nearly 30.

When I asked her how she feels about her life now, she answered, “There is no life, because I don’t have a family or children.”

Karuhimbi has also never held a steady job, and has no hope of finding one in Nyamata, the small town where she lives. Though it is only one hour outside Kigali, its one dusty main street lined with decrepit concrete shop-fronts lends it the feel of a dying frontier town. As in most Rwandan towns, there is little commercial life: no supermarkets, no restaurants — just a gas station and a traditional market.

Karuhimbi at least lives in an area where there are other survivors, though she didn’t know of any local survivors’ organizations or support groups. In some places, the vast majority of Tutsis were killed, and the survivors have very little company. Human rights organizations have reported cases of intimidation and even a few murders of witnesses. But it seems likely that most intimidation is subtler, and goes unreported. Even here, like other survivors, Karuhimbi was afraid to speak in public about her experiences. Rwanda is a crowded place, and every time we stopped somewhere, people gathered and stared. Finally, we drove down the road to an empty lot past the gas station, and Moses, my taxi driver who doubled as a translator, periodically shooed away the groups of children that gathered around us.

Prolonged genocide

HIV is the most recent time bomb to hit women survivors such as Mbezuanda. In a recent report, Amnesty International stated that at least 250,000 women were raped during the genocide, and that 70 percent of the female survivors are estimated to have been infected with HIV

Some believe those numbers are an underestimate. “We are sure that 90 percent of Tutsi women were raped,” said Marie Immaculee Ingabire, a spokesperson for the women’s organization Pro Femmes Twese Hamwe. “We are sure that [the women] have not all told,” she noted, citing the immense stigma around rape in conservative Rwanda. But now, Ingabire added, testing positive for HIV is spurring some women to talk about their experiences.

African Rights recently published a report focusing on 201 women survivors in Rwanda and Bujumbura, Burundi. All had been raped, and many were HIV positive. Others did not want to get tested because they felt their situation was hopeless anyway. “A lot of them see themselves as dead already,” Onyango explained. “It’s sort of a prolonged genocide. I don’t know which is worse, dying immediately or dying over 10 years.”

Many Rwandan activists are furious that the genocide suspects awaiting trial at the International Criminal Tribunal for Rwanda (ICTR), in Arusha, Tanzania, are receiving anti-retrovirals (ARVs) and good medical treatment. Pro Femmes and the London-based Survivors Fund are currently trying to persuade the ICTR and the United Nations to provide ARVs to women survivors so that they can stay alive long enough to testify.

The genocide widows organization Avega Agahozo runs a small clinic in Kigali for 600 HIV positive women, but at the time of my visit, it was only able to provide ARVs to 22. Aurea Kayiganwa, an adovcacy, justice, and information officer, said that Avega Agahozo’s aid has dried up since 1999.

“During the genocide, we didn’t have international solidarity,” Kayiganwa maintained. “What we want now, 10 years after, we want people to help the victims of genocide.”

Since April, funding from the Bush administration and the Global AIDS Fund has made free or heavily subsidized ARVs more widely available in Rwanda and in much of sub-Saharan Africa. But they are still reaching only a minority of the infected, and for some, it is already too late.

Turning a blind eye

Benoit Kaboyi, executive secretary of the main survivors organization Ibuka — which means “remember” in kinyarwanda — is a busy and rather tense man in his 30s.

I arrived early one morning at Ibuka’s cramped offices on the third floor of a concrete building in the center of Kigali. After a long wait, I was ushered into a cluttered room, to the chagrin of a Japanese journalist who got there a few minutes after me. Kaboyi, himself a survivor, was tired of talking to foreign journalists, and a little macho when confronted with a female reporter. He answered my questions rapidly, but with strong, unfeigned emotion. We were constantly interrupted by phone calls and by people sticking their heads in the doorway. It was the day of a major international press conference about the genocide commemoration events, at which Ibuka was scheduled to appear.

Although the Rwandan government has set up a small fund that pays school fees for genocide orphans, they are still discussing how to fund a compensation package. Kaboyi thinks the world has a responsibility to help. “We have to honor the million who were killed while we were watching television,” he argued.

Kaboyi said that donors balk at giving aid to victims because under the rubric of unity and reconciliation, giving special consideration to genocide survivors would be divisive.

“The reality we are facing now is that they say if we support you there will be no unity and reconciliation,” he said. “Imagine unity and reconciliation! The killers have rights to return to their property. They don’t pay anything and they say I will not support you but I will support perpetrators who return home.”

Kaboyi was referring in part to the perceived bias of Western aid agencies toward Hutus in the aftermath of the genocide. Following the mass flight of Hutus to Zaire and Tanzania, hundreds of thousands landed in refugee camps that soon became squalid and disease-ridden. Aid agencies and journalists flocked to the camps, lamenting the dire refugee situation, and mostly ignoring the fact that the camps were controlled by the Interahamwe.

Meanwhile, Tutsi survivors in Rwanda were left to their own devices to reconstruct their lives. In the following years, there was also an emphasis on resettling Hutu returnees, though some critics of the government believe this was simply a way of keeping an eye on people. All the same, there was less concern about resettling survivors because many had never fled the country.

The stance of the United Nations and Western countries during the genocide remains a troublesome topic in Rwanda. In the weeks leading up to the anniversary of the April 6, 1994 plane crash that sparked the mass killings, Rwandan President Paul Kagame repeatedly blamed world powers for the way they ignored the genocide.

Kagame repeated this theme at a commemoration ceremony at Amahoro Stadium in Kigali on April 7. Lacking an official press pass, I slipped into the stadium just as the events began. The audience of about 10,000 was largely silent and somber. Then, when a group of female survivors came out to sing, women in the crowd started to cry noiselessly. As a male survivor took the microphone to give his testimony, the crying turned to sobbing, and shrieks and wails punctured the calm. Soon, several women were carried, limbs flailing, out of the stadium. Every few minutes for about half an hour, another woman erupted and was lifted up and then taken away. Their screams were still audible even when they were in the medical tents outside the stadium.

Toward the end of the ceremony, Kagame addressed the stadium and castigated the international community for disregarding the warning signals and allowing Rwandans to die.

“It is clear that the world had the capacity to stop the genocide but deliberately chose to turn a blind eye on Rwanda,” Kagame said.

While African heads of state including South Africa’s Thabo Mbeki, Uganda’s Yoweri Museveni, and Kenya’s Mwai Kibaki spoke at the ceremony, the Belgian prime minister was the only Western leader to attend.

Uncertain justice

Picturesque as it is, Rwanda also is a very closed place, where people are wary of others. Because it is such a tiny country, people have no choice but to live close together. Some survivors see people who killed friends and relatives walking around every day. It has been peaceful in the last few years, but that doesn’t mean the divisions are gone.

“There’s a lot of mistrust,” said Onyango of African Rights. “You have survivors suspicious of everybody they live around and you have the general population suspicious of survivors.”

The old labels of Hutu and Tutsi are now banned. They are no longer used on national identification cards. The official discrimination of the past regime is long gone, though the Kigali elite is definitely Tutsi-dominated. I was appalled to hear my young translator in Kibuye say that Hutus are “rude, not polite, so it is hard to talk to them.”

Clearly the old categories still resonate for some. “Whoever you are, you don’t want to go through that horror again, but definitely, you know who you are,” Onyango explained. “People are cautious anyway, but they are even more cautious now.”

Nevertheless, there is some evidence that this may be changing, albeit very slowly. For example, Moses, the taxi driver who drove me to Nyamata, was born and raised in Uganda as the child of exiles and moved to Kigali shortly after the genocide. Without being prompted, Moses said that he didn’t know about the distinction between Hutus and Tutsis until he saw the massacres on Ugandan television. And he said he didn’t think about himself or other people in those terms. Perhaps there are others in the younger generation of returnees who feel the same, or at least strive to think that way.

In many other ways, Rwanda is moving on from its past. The economy has rebounded in some parts of the country and Kigali is a rapidly expanding city. Tourism is back, with intrepid travelers once again making their way to see the mountain gorillas. In April, an attractive national museum and memorial center dedicated to the genocide opened in Kigali. But questions of justice and reconciliation always lurk in the background.

Although the ICTR is trying the leaders of the genocide, there are still close to 80,000 lower-level suspects in prison in Rwanda. Given the limited number of judges and lawyers, the government has launched an ambitious plan to try these suspects in local people’s courts known as gacaca (pronounced ga-CHA-cha). These courts, which finally started up this summer, are supposed to involve investigations of what happened in each community, as well as voluntary confessions and apologies from suspects. The panels of judges are all regular community members, and area residents are expected to provide testimony in support of or against suspects. Those who confess will be freed if they have already served jail terms or sentenced to community service.

Human rights organizations such as Amnesty International, however, have expressed reservations about gacaca. Richard Haavisto, Amnesty’s Central Africa researcher, said that communities are not fully participating in gacaca because they don’t have confidence in it. Those who might be willing to give evidence are afraid of retribution, and others are afraid to defend the unjustly accused for fear of being accused themselves.

“The Rwandan government must create a climate which convinces people that there is an equitable justice system at work,” Haavisto argued.

Many Rwandans, though, are willing to give gacaca a try. At the Nyamata church, not far from where Karuhimbi lives, 20,000 people are said to have been massacred. The site’s caretaker, Rwema Epimague, himself a survivor, told me that soldiers and the Interahamwe massacred 10,000 people in and around the church over a period of five days, and another 10,000 in the surrounding areas. The numbers may be exaggerated, as the church does not look big enough to hold more than 1,000 people, but there are undoubtedly a huge number of skeletons at the site.

Unlike some of the other memorials, which have been left largely as they were found, Nyamata was cleaned up and most of the bodies were placed in a huge white-tiled tomb behind the church. There is an opening on top, and a ladder descends into a long, dark hallway, lined by shelves of bones from floor to ceiling.

Inside the church, light pours in through the hundreds of bullet-holes in the tin roof and there are still bloodstains on the walls. As with many other churches around Rwanda, crowds of Tutsis crowded into the church and its grounds, thinking they would be safe. But the Interahamwe fought their way inside after throwing grenades and tear gas. They left piles of bodies behind.

One of the survivors of the massacre is now a teenage boy with a huge scar on his shaved head. Edmond Cassius Niyonsaba, a high school student, said that he stayed alive by hiding under the corpses of his mother and father inside the church. Edmond followed me around with a sweet smile, and his speech was somewhat slurred.

On the day I visited Nyamata, workers were busy digging up bodies from the grassy fields near the church. Inside, there were at least a dozen partially mummified corpses lying on a blue plastic tarp, ready for the anniversary reburial on the 7th. Bits of clothing were still visible on the bodies, as were the ropes that bound their wrists.

Epimague informed me that there were bodies like these still in the ground all around the church, and all over the country as well. He was less concerned about justice than with finding the bodies. Epimague hopes that gacaca confessions will reveal the locations of yet more mass graves. “It helps prove exactly how many people were killed,” he said.

On a visit to the former Hutu stronghold of Ruhengeri, a mountainous area where the Interahamwe militia once found a great deal of support, I spoke with several farmers about their lives. Most Rwandans were extremely careful about criticizing the government, especially in the current climate in which opponents can easily be accused of promoting genocidal ideology. But these farmers were quick to say that not much has changed for them economically. “I was poor before the genocide and I am poor now,” one woman told me.

Though the woman farmer used the genocide as a time marker, she, and others, evaded my questions about what happened here in 1994. Most Hutus are extremely loathe to discuss the genocide. The only answer I could extract was one older man’s very quiet admission that many people died in his community. Yet most of those I spoke with said they approved of gacaca and thought it was a good solution.

On the long drive back through the mountains back to Kigali, I wondered if it was easier to accept gacaca if you weren’t the one whose whole family was murdered.

’How Can You Get Them to Answer to Their Crimes?’

Despite the fact that there were so many killers during the genocide, it was hard to find anyone out of jail that admitted to having taken part. Most of the leaders and the hardcore extremists were either awaiting trial at the ICTR or have fled to the Democratic Republic of Congo. Though Rwandan survivors often claimed that the perpetrators were still living in their communities, they would not help me find them. The closest I got to a perpetrator was Musavimana.

A mechanic in Kibuye, Musavimana (the only name he gave me) was only willing to speak to me if we went to a little island nature reserve where there was no one else around. He was a nervous, hard-looking man who seemed much older than his 24 years. Musavimana, unlike some Hutus, did not deny that the genocide happened, or that it was a genocide committed by Hutus against Tutsis.

He described the events in the town from April 7 onward, insisting, “The people involved in the killing were Hutu, the Tutsi didn’t kill anyone.” He added that the massacres in Kibuye were well-organized, planned ahead of time, and carried out quickly.

Musavimana said that after the RPF took over in 1994, he was arrested for a crime he did not commit. He claimed that he buried a Tutsi boy who had been killed by some Hutu boys. He witnessed the murder because his family had provided shelter to the boy behind their house. He said that a Tutsi woman saw him with the body after the killers had fled, and later reported him to the police. Musavimana spent over eight years in jail. One day during a work release, he saw the killers, and convinced them to confess to the killing in the special prison gacaca. Those who confessed in prison were released, and so they took the opportunity to do so, taking the blame off of Musavimana, who was also released.

He praised gacaca, but cautioned, “Not all people will welcome gacaca, because some people who did bad things are still free, and they will do everything possible to fight it.”

As we clambered back from the island onto the shore and walked toward the road, we were met by several men who called out to Musavimana. Clearly they wanted to know what he was doing with foreigners and a Tutsi. My translator was nervous. I tried to give Musavimana some cash nonchalantly so it would look like he was just acting as a guide, and thanked him for showing us around. We drove off quickly, and I looked back before we rounded a corner to see Musavimana talking with the men. All I could do was hope that they were friends.

Was Musavimana’s story true? If so, it was both a sad story of the miscarriage of justice, which suggests that there are probably innocent people in jail, and a sign of hope, that there are ordinary Hutus who think that what happened in 1994 was wrong. It seems unlikely that he would have agreed to talk to a foreign journalist if he had something to hide. On the other hand, even the minority of prisoners who have confessed to committing crimes in 1994 have refused to take full responsibility. Most insist that they were forced to do what they did, or that they only acted as accomplices and didn’t carry out actual murders.

Some survivors such as Kaboyi and Mbezuanda doubt that there will ever be justice in Rwanda. Mbezuanda said that she may be dead before her time comes to testify in the gacaca court, and Kaboyi wasn’t sure justice could ever be possible.

“I don’t know,” he shrugged, toward the end of our conversation. “Imagine more than 1 million killed. Imagine more or less than 1 million participated. How can you get them to answer to their crimes? I don’t know.”

When I asked Onyango of African Rights about whether she thought gacaca was worthwhile, she answered that it was not ideal, but that it was the only viable solution out there.

But even with gacaca, she said, reconciliation takes time. “The whole idea of unity and reconciliation sometimes is touted too much,” she warned. “It’s not what’s really happening and it’s not going to happen that suddenly.”

Go to part two

 

A wild life

2004 Best of Through the Looking Glass

Leading simple but hard lives, Brazil’s cowboys are responsible for producing much of the beef that fills North American supermarkets.


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to enter the visual essay.

For over 100 years, Brazil’s cowboys have earned a living and shaped a culture with their bare hands and sweat. The life of a cowboy in Brazil is not for the timid. It is an intense existence filled with hard work on long, hot days. To herd cattle in the midwest of Brazil is to live.  

Brazilian cowboys  lead simple lives. Most had a father or relative who was one. They do not regret passing by other opportunities, because their life is handed to them at a young age. Cowboys, or peoes as they are known in Portuguese, begin training very young. They accompany their elders until the day comes when  they start the ride to herd beef cattle with other peoes.

Most cowboys live their entire lives on the same ranch. As part of their pay, housing on the grounds is provided at least that’s how it works on the many ranches of renowned Porto Murtinho Fazendeiro, Nelson Cintra.

On Nelson’s ranches, cowboys like Rivalino receive a monthly salary based on skill and performance. They also receive housing in general living quarters, or in a small two-room house if they have a family. When they need medical care, all they need to do is ask, and the boss will normally pay.

This is not a bad life, considering the economic situation in Brazil. A small and wealthy elite still controls most of the land and resources, and much of the population continues to live in poverty. In rural areas there is no middle class. Most of the simple shacks of rural laborers lack water supply, sewerage, and electricity, unless they are lucky enough to live on a ranch.

Brazilian society displays vast inequities between rich and poor, leaving a huge economic barrier. Despite economic progress, the situation in Brazil is that of a profound schism between the haves and the have-nots. Those who become cowboys in Brazil live a simple existence but are grateful for whatever little they have. They work hard during the day and play hard at rodeos at night, an occasional respite. However, much of the rural population — especially cowboys and their families living on ranches — lack access to educational, social, and financial resources which could dramatically improve their position in life.

Being a Brazilian cowboy is not a revered profession. It’s not envied or sought after by many. There is even a stigma attached to it by some  who see cowboys as uneducated, illiterate, and socially inept. It may be true that most don’t receive an education past elementary school, if at all. And they rarely leave the ranch for excursions to the city. You can almost count on never seeing a cowboy visiting a museum.

But when we look at the beef surrounding us in supermarkets and restaurants, we can begin to appreciate these cowboys for dedicating themselves to their profession, day in and day out.

 

A good day for Grant

For another child it would be a typical day at school. But for Grant, a seven-year-old coping with attention deficity hyperactivity disorder, it's a day of frustration and loneliness.

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Today was a very good day for Grant,” Kay McNeil, a teacher at Mary Paxton Keeley Elementary School, said on Wednesday, May 5, 2004. “We’ve been working on his not hitting other kids. For a week and a half, he hasn’t hit anyone.”

Seven-year-old Grant Lanham was diagnosed with attention-deficit hyperactivity disorder (ADHD) when he was three. He has been taking medication for it ever since.

Nowadays so many children have been diagnosed with ADHD that there is public concern about potential widespread over-diagnosis. However, Grant’s parents think he cannot function in school without taking his medicine.

When Grant was first diagnosed with ADHD, the Lanhams already knew what to do. Jordan, Grant’s older brother, was given the same diagnosis eight years ago after a teacher told the Lanhams that their son could not sit still in his seat at school. At that time, the boys’ father, Geoff, realized he had suffered the same difficulties during his own childhood. Four years ago, Geoff Lanham was also diagnosed with ADHD, a hereditary disease.

“When Grant was about three years old, he was twice as bad as Jordan and he would run into the street after you said to him to stop and wait for an adult. He was constantly moving and on the go,” said Grant’s mother, Pam Lanham.

Grant visits his doctor every three months to make sure his medication is working the way it should, and to make sure he is gaining weight properly, because his medication suppresses his appetite. The Lanhams say medication helps Grant keep himself more in control.

Although children with ADHD have problems concentrating on tasks at school because of their hyperactivity, many are smart and surprisingly creative. Sometimes Grant spends hours reading books or building Legos at home. He likes science and math, and surprised his teacher and parents with verbiage unusual for seven-year-olds.

“His mind is always looking at things in different ways,” Pam Lanham said. “I wish we could channel all of Grant’s energy into something constructive.”

One problem for children with ADHD seems almost counterintuitive: an excess of attention, or hyper-focusing. It is hard for Grant to shift his attention from one thing to another. He is a happy boy at home because he is usually free to indulge in whatever he is interested in whenever he feels the interest. However, if Grant is interrupted, he gets frustrated and yells.

Grant also has some problems with group socializing. At school, Grant not only lacks concentration in class and excessive focusing, he also shows aggressive behavior on account of his impulsivity.

“Children with ADHD cannot function with other children sociably,” McNeil said.

Grant sometimes gets frustrated and pushes other children when they do something he doesn’t like.

“ADHD children have a very short fuse and get angry very quickly and they don’t realize they are angry,” Geoff Lanham said.

One day, Grant kicked the father of one of his classmates at school. After Grant threw a fork at a girl in lunchtime, he had his lunch at the principal’s office — alone.

“He doesn’t have any friends,” Pam Lanham said. “That’s probably the hardest part of the whole thing.”

STORY INDEX

ORGANIZATIONS >

Children & Adults with Attention Deficit/Hyperactivity Disorder
URL: www.chadd.org

Federation of Families for Children’s Mental Health
URL: www.ffcmh.org  

American Academy of Child & Adolescent Psychiatry
URL: www.aacap.org

Fight for Kids
URL: www.fightforkids.org

 

The specter

2004 Best of Interact

She could never really appreciate her father’s 30-year struggle with multiple sclerosis. Until her own fingertips went numb.

My social worker tells me that it is hard to grow up with a chronically ill parent. She says it’s okay to feel neglected. Angry, frustrated, robbed, dysfunctional. She’s talking about my childhood. But as I put a hand on my burgeoning belly to quell the kicking, tears come to my eyes.

Before I was even born, my father felt numbness in his hands. It was right before he got engaged to my mother. The doctors called it stress. And whenever it occurred, my father would laugh and say, “I must be under a lot of stress.”

When I was in fourth grade, we went to get glasses together. I was becoming nearsighted; he was having trouble focusing. The doctor gave him exercises instead of glasses. It wasn’t until eight years later that the doctors began to mumble, “M.S.” — Multiple Sclerosis.

At my college graduation, my father was walking with two metal, arm-brace style crutches. He wore polished dress shoes and a lime green leisure suit, which he was proud to announce had cost him only $16 due to a computer error. Other fathers wore khakis, colorful polo shirts, and well-worn boat shoes.  I have a picture of him smiling a toothy grin. To me, he was a burden and I wished he would walk faster — without falling.

M.S. winds its spectral ways through my life, and in and out of my heart and my brain. But before you have an image of me in a wheelchair, let me say, aside from residual tingling in my hands and legs that ever so rarely abates totally, I am currently symptom free.

Though I was haunted before I was even cognizant of it, my first memory is of early elementary school, first or second grade. The M.S. Society was sponsoring a read-a-thon and sent an accompanying film. I watched the film. In fact, I can still see the images when I close my eyes; it terrified me so completely. In the film, a man is getting married and while leaving the church he’s pelted by rice and experiences a moment of double vision. He rubs his eyes. Later, we see the same man on the beach throwing a ball. The ball rolls off his fingertips and he has to scramble to pick it up. He laughs. The next scene shows the same man, now with a beard, in a wheelchair looking out at the world with a vacant stare.

I took the read-a-thon to heart — I read many books — maybe 100 — and signed up many neighbors as sponsors. I felt that anyone could drop a ball or get rice in their eyes and see double images for a few seconds. Perhaps if I read enough books, raised enough money, I would be immune.

M.S. was all around me in so many ways. Right after college, my roommate went through the same thing with her father, diagnosed with strokes that no one noticed, then M.S.

A friend who always came for Thanksgiving was diagnosed. She faded quickly.

In the early 1990s, I belonged to a women’s salon. We were 20-somethings who got together once a month to drink red wine and discuss Anita Hill, Susan Faludi, and Camille Paglia. There was a member whose mother had M,S. My new friend drove a station wagon for the express purpose of taking her mother to the mall with her scooter. In contrast, my own mother didn’t even want handicapped plates.

My new friend was terrified of getting M.S. I became petrified. M.S. is not hereditary, we learned, but it does cluster in families. At that time, the statistics said that she had a 3 percent chance of getting it as the daughter of an afflicted mother. I had a 1 percent chance of a father/daughter connection. A 99 percent chance of escaping the apparition’s clutches, crutches. The statistics gave me false hope.

While I was working at an association and writing the company newsletter, the husband of a co-worker became very sick with M.S. He could still draw cartoons, which I published. He died when his lungs gave up.

My mother put my father in a home because she became afraid that he would burn the house down.

When I married, we had a separate ceremony in my mother’s living room for my father. I didn’t want to get married in a nursing home with the prevailing odor of urine in the air. Also, my father couldn’t handle crowds. So we paid for a van and a nurse to bring him to my mother’s home in Philadelphia. My mother bought him a silk, midnight blue paisley
robe to wear over his hospital pajamas. He was happy; I have pictures of him grinning toothlessly, but I don’t think he had a clue who I was or what was going on. I wore my mother’s wedding dress, which he didn’t recognize. I exhaled when they took him back.

We held a second ceremony in Washington two days later with lots of guests in a beautiful place, so that I could still have my dream wedding.

In May 1997, I had been married for almost a year. One morning after painting a door in my basement, I woke up with slight numbness in my fingertips, like I had been in the bath too long. I thought it was from being careless cleaning up the paint, messing with the paint thinner, but deep down I had a feeling.

In August, I was teaching a fiction workshop in rural Garrett County, Maryland when I woke up with hands and feet that felt like they were asleep. I panicked.

I knew. I was stuck in the woods, but I knew. I tried to think of something else.

When I returned home, I saw five doctors. They diagnosed me with carpal tunnel, Reynaud’s phenomenon, hyperventilating, water retention, and depression. But I knew. When I went to visit my father, I struggled not to say, “It’s starting.”

In the fall, my father’s nursing home doctor called me. I was working at a university and there was a line of advisees standing at my door. The doctor told me that my father had septicemia, a blood infection, from a rash they couldn’t control and asked my permission to let him go. I couldn’t decide what to do. My father was 64, could not walk and was incontinent. He couldn’t read or understand television. He used to believe that my mother made him sick, had poisoned him. Now he believed that it was the work of the nursing home. He didn’t know who my mother was and briefly had a relationship of sorts with another woman who would harass us when we came for visits. He was very unhappy. He hated the psychiatric ward in the Veterans Hospital, but it was the only place that would take him once he started biting. And when he bit, he drew blood, from nurses who tried to help.

He was more like an advanced Alzheimer’s patient than what most people envision M.S. patients to be like. He didn’t recognize me. He had no quality of life. So I asked what measures they wanted me to withhold. When I found out that the medication I would be withholding was intravenous antibiotics, I told the doctors to go ahead, move him to the hospital wing. Hook up the I.V. Save him. Antibiotics didn’t sound so heroic to me. That was early September. The doctors grudgingly complied.

About a month later, on October 25, with no warning at all, I woke up numb from the waist down. I had gone to sleep fine, and woke up without feeling. I could walk, simply because I could remember how, not because I felt my legs or the floor under my feet. I took a hot bath and massaged my legs. I tried to tell my husband. I went to the mall and bought a pair of comfortable, supportive shoes. And a colorful chenille scarf. And Polartec gloves. And new makeup, lipstick and mascara. Two large shopping bags of stuff. On Sunday, in the frigid, pouring rain, I went to the Major League Soccer championship game and my team won. I sat there wondering if I would ever be able to dance again. Feel sex again.

Monday, I called my doctor. We tried to get me in to see a neurologist. We failed. No one had openings for weeks. He sent me to the emergency room, and said he would have a neurologist meet me there. No one met me there. I received a basic neurological exam from an intern.

“Press down on my hands,” she said.

I pressed.

“Walk in a straight line,” she said.

I walked: heel, toe, heel, toe. I looked at her blunt page-boy hair style and wondered where she went to medical school.

“Close your eyes and touch your nose.”

She seemed nervous and unsure of herself. I snooped into my chart after she left. Positive for Bambino’s Reflex. Everything else was normal. When they tried to send me home after half a day of waiting, I screamed at the attending physician. His name was Dr. Love.

I saw a neurologist the next day. I had claustrophobia-inducing M.R.I.s, painful evoked responses and blood work. Nothing was conclusive, no tests showed any abnormality that added up to any diagnosis. My brain M.R.I. was clean. They had no answers. The feeling started coming back. I went back to work. Then I went to Jamaica.

In early December, I got another call from my father’s doctor. The infection was back. He had never recovered the first time. This time they strongly recommended against heroics. And this time, I took a deep breath and agreed to not medicate, nervously tapping a numb foot against the underside of my desk. My nails dug in to the bottom of my desk. His life as my father flashed across my brain — singing songs, cracking
jokes, tickling me until I screamed.

Now he was mostly a vegetable, his only reaction to stimuli was to bite. Whose fate had I sealed? I went to see him and said goodbye. He was no longer conscious. He was frail, bald, toothless, and sunken, and covered in oozing sores. He was wrapped tightly in a white sheet, as if it were all ready over. The fact that the nurse put on latex gloves made me afraid to touch him.

My mother handed me gloves from the box on the cart. I stroked his arm, his forehead. His only response when we were there was to try to bite the nurse when she adjusted his oxygen. He was dead from kidney failure a few days later.

We held a memorial service a week later on the winter solstice, the longest night. The rabbi who performed the service kept talking about how lucky my father was to get out of Germany in 1938. The crowd at the funeral home remembered my father best as the life of the party, a champion downhill skier, and an energetic businessman — not as the animal caught in a trap that he was at the end. So they were was aghast at the notion of my father being “lucky.”

After the service, I struggled with telling my mother that she wasn’t done with M.S. yet. Her only child was doing better, but I still couldn’t walk more than a block. My father had his first symptom at 30. I was 31. He was dead at 64, after a long struggle.

I thought of a friend from graduate school who had broken up with a long-time musician girlfriend. During a weeklong flicker of a dying flame, her hearing problems were diagnosed as M.S. He worried that leaving her now was evil. He didn’t want to pull a “Newt Gingrich.”

In June, I had a miscarriage. I was pregnant, just barely, and I knew something was wrong because my period was eight days late, but the home tests were still negative. I was very tired. I felt dizzy. When I finally got a very faint positive, I ran to the doctor. She called me with blood results the next day.

“You are what we call ‘a little pregnant,’ she said.” “You will miscarry any time now.”

As I put the phone down, the right side of my whole body started to go numb. From my ears and scalp to my breasts and stomach on down to my toes.

My neurologist implied that this was it. This would mean definite diagnosis. Multiple incidents, separated in time and space. I sat in the car for 45 minutes and cried.

The next day I woke up with double vision. It lasted four days. I couldn’t drive, watch television, read, use the computer. Well, I could, but only if I shut one eye. So after a day, I drove to work and just kept one eye shut. And on the fifth day, I woke up and I could see normally. I never thought about the future. I couldn’t.

After the pregnancy loss and a short cruise, I had another set of M.R.I.s that showed the bright spots of brain activity. The only hopeful thing the doctor could say was that the severity of my father’s illness didn’t have a bearing on the progression of my situation. Not very reassuring. He wanted to start drugs, but I wanted a baby, so it was put off. He
told me that he didn’t recommend breast-feeding, so that I could start medication right away after the birth.

I clung to a memory from a seventh grade slumber party. Six girls draped in flannel nightgowns were lounging around on the shag family room carpet chomping ruffled potato chips with French onion dip while Space Invaders cast an eerie green shadow around the room. Someone turned off the volume. The mother of the party-thrower told us about her diagnosis with M.S. when she was in her 20s. She was working a job that she hated. She went blind, completely sightless, for six months. She quit her job and never had another exacerbation.

I decided to look for a new job.

Another adviser at my school was diagnosed with M.S. She had two preschoolers, one who was fed through a shunt in his stomach. The wife of a man in the college’s marketing department was diagnosed. They had four children. After I left, the woman who got my old office started having M.R.I.s.

I got pregnant again in November. In January, I had another exacerbation. I couldn’t use my hands. I couldn’t type; I couldn’t write. I couldn’t dial the phone or chop dinner. I cried that I wouldn’t be able to hold my baby or change her diaper. I stayed in bed for a day with the blankets over my head. What had I done? I had a fearless friend who let me practice holding her bouncing six month-old boy during the meditative silence of a Quaker meeting. I was surrounded by people who were holding me in the light. I cried. I almost dropped him. But I didn’t.

I got a new neurologist. He was very reassuring. He knew I’d be okay in week or two because in the second trimester of pregnancy, hormonal changes would kick in and reduce my symptoms. And I was okay. I got my hands back and that was the end of that.

I breast fed my daughter for over a year. I’ve changed more diapers than I’d like to think about. Now I hope the odds favor my daughter not getting M.S. She has a 97 percent chance of not experiencing the phantasm of feeling first hand.

And while questions about the future flash across my mind from time to time like subliminal advertising, the apparition has been at bay for over six years.

Except six months after my daughter was born, I was back teaching just a course or two and very sleep deprived. I teach a course about violence and I chose a combination of essays from the textbook to teach the concept of “analysis.” The first essay in the text was a newspaper report of a man who took a hostage and then committed suicide.

During class, I was horrified to realize that the man took the hostage because he was despondent about having been diagnosed with M.S. And even worse, the psychology text explained “learned helplessness.” The students were to draw the conclusion that the man took the hostage, had the stand off with police and committed suicide because of the unpredictability of M.S. I couldn’t believe that I had assigned this reading. I couldn’t believe that in my brief perusal, I hadn’t realized that M.S. had followed me into my textbook and set up housekeeping.

Some nights, I have trouble falling asleep, because of what I might be robbed of by morning. Will I be able to see when I wake, will I be lame, or worse, stupid? Some nights I get up and watch television, just because I can. The images that dance across the screen make sense to me, for now. And maybe forever. Maybe.

My students are now haunted. I remember their faces that fall 1997 morning when I showed up for class tripping over my own numb feet and using a cane. All of a sudden. One day. And while my students were analyzing learned helplessness, did I learn anything? Yes.

After I lost the use of my hands, I had a new respect for Bob Dole. As a straight party Democrat, this is saying something. But Dole’s war injury left him so he can’t use his hand. He most likely can’t buckle his jeans, tie his tie, or cut his food without assistance. His courage, I think, goes largely unrecognized.

I learned about ramps and what it’s like to be left-handed in a right-handed world.  I learned that men use only one hand to just dump shampoo directly onto their head and women need two to pour it into their hand first. I learned that if you send checks that look like a five-year-old wrote them and then sign them with your other hand, they don’t come back.

It’s fascinating to lose the use of something and get it back. It’s such a gift. I danced all over the house on the first day I could again. Like a wild woman. With abandon.

I never take holding my daughter or feeling the softness of her hair for granted. I cherish it. I cherish so much.

So while my mind does get perturbed by the phantom from time to time and my husband insists we live in a house that has only one floor, the apparition is keeping its distance right now. The specter of M.S. visits my family, my friends, my students, and my classmates in our imaginations — but not in my myelin.

M.S. scares us, makes us appreciate, and takes away and, sometimes, gives back.

STORY INDEX

ORGANIZATIONS >

Evoked responses
URL: http://www.nationalmssociety.org/sourcebook-evoked.asp

Exacerbation
URL: http://www.nationalmssociety.org/Sourcebook-Exacerbation.asp

Myelin
URL: http://www.nationalmssociety.org/sourcebook-myelin.asp

 

The wars history left behind

Even in an era of 24-hour news coverage, not all atrocities make the cut, including recent horrors in Sudan. Philosopher/essayist Bernard-Henri Levy spent a year of his life trying to find out what happened to the wars that time forgot, but was there anything left to find?

(Courtesy of Melville House Publishing)

There is, today, only one serious political problem:  the tragedy of the disappearance of the other.

—Bernard-Henri Levy

Top billing in the competition for media attention has been a veritable blood bath for the past few months. A summer of election politics, Olympic scandal, and the potential loss of overtime pay for six million Americans have dominated “above-the-fold” coverage of most major American newspapers.

What is remarkable about this summer’s press coverage is how unremarkable the stories have been. The old journalistic adage “If it bleeds, it leads” found little place in the editorial decisions of mainstream newspapers. Or else the crisis in Sudan has been deemed unimpressive by media standards for death and destruction. Although most major newspapers offer regular updates about the situation unfolding in Sudan, these stories hardly reach the fever pitch of Paul Hamm’s “mistaken” gold medal or the veracity of the attacks on John Kerry’s war record.

Acts of naming

After the unforgivable inaction in Rwanda in 1994, both the media and U.S. government have been quick to utter the ‘G’ word — genocide — but even such a declaration has not compelled us to act in any significant way. The political malfeasance of the Clinton administration should not be forgotten. After the decision was made to classify the brutal slaying of Tutsi Rwandans as acts of genocide rather than genocide — a critical semantic distinction since use of the latter term obliges international intervention under the 1951 United Nations Convention on the Prevention and Punishment of the Crime of Genocide,  the Clinton administration actively blocked international action both through the United States’ privileged position in the United Nations via the Security Council and through less formal diplomatic channels.

After the deaths of 800,000 Tutsis, the United Nations was left to apply ad–hoc peacekeeping efforts in the form of refugee assistance and humanitarian aid. Where this was possible, many of those helped were members of the Hutu power militias that orchestrated and carried out the genocide. Regrouping in the camps in Goma, Hutu power militias led killings and attacks using the camps and assistance in the aid of such atrocities. The horrors that continue in Burundi and the Congo today cannot be disentangled from the sordid past of purposeful ignorance that characterized the Clinton administration’s lackadaisical response.

The first time as tragedy, the second as farce

The Bush administration’s version of willful ignorance in the case of Sudan has been to substitute directionless condemnation for action. An administration too committed to “global democracy” to wait for the United Nations to enter Iraq is now content to obey and wait for direction from those same painfully slow U.N. channels. The diplomatic sclerosis of the U.N. Security Council has yet to be condemned by the short-tempered Bush foreign affairs team — in this case. Even the decision to omit the explicit threat of sanctions from a Security Council resolution directed at Khartoum’s involvement in the Darfur region of Sudan was met with little more than disappointment.

Unfortunately, given the rhetorical power behind the Left’s critique of the Iraqi intervention, it is difficult to muster the intellectual consistency to decry this wait-and-see approach. The Democratic and moderate Left demand for a measured multilateral response in Iraq is being heeded in the case of Darfur. What we find at the heart of this deadlock is a strange double bind that has plagued Leftist politics at least since Vietnam: the opposition to empire lacks an alternative strategy and language for intervention.

Years of developing an anti-colonial critique of economic and military intervention have left most of the nations under the siege of violence without the basic resources necessary for defense or survival. Countries ravaged by both structural and military violence face a world of decreasing aid and attention. Some have accused the West of using half-hearted attempts at peacekeeping as an alibi for insufficient financial and infrastructure assistance.

Supporting minimal peacekeeping efforts to contain the fires started by post-colonial economic exploitation, Western nations are willing to commit just enough resources to create a kind of negative peace. That is, just enough stability to extract necessary resources, such as oil or cheap, expendable labor, but not a peace that allows for basic inequities — including organized sexual violence, debilitating diseases, or illiteracy — to be addressed in a comprehensive manner. It is this increasingly common vulnerability for which the anti-globalization, anti-empire Left has no answer.

Those who doubt this dark thesis should only ask why the invasion of Iraq inspired massive popular protest against the Bush administration for taking out a dictator while the daily murder, rape, dislocation, and terrorizing of as many as two million in Darfur has not inspired so much as a witty ad campaign from MoveOn.org (save the courageous acts by Danny Glover and a few others arrested outside the Sudanese embassy).

There is a selective silence, in that there is reporting on Darfur but inadequate political response regarding violence in southern Sudan — demonstrating a kind of bizarre narcissism in which only atrocities committed by the United States or other western nations matter. The failure of this fascination with our own destructive capability is that it obscures often more devastating and systemic levels of violence in what Bernard-Henri Levy calls the “forgotten wars” of planet Earth.

Even as the Bush administration and CNN grouse over the word genocide, vital elements of the conflict are omitted from the explanation of conflict in Darfur. The description of bloodthirsty Arabs on horseback now ubiquitously known as the Janjaweed in news cycles fits nicely into the current lexicon of Arab stereotypes. The blaming of internal ethnic divisions belies the fact that Western and Chinese oil development has played a fatally significant part in the massacres beyond the Darfur region, such as the Nuba mountains, Dinka villages, and Nuer populations throughout southern Sudan. Although described as a recent flare-up in ethnic tensions between Arab Muslims and Christian and Animist black Africans, the organized displacement and outright slaughter of villages in southern Sudan predates the narrow timeline cited in CNN’s coverage of the Darfur crisis.

Part memoir, part philosophical reflection on ethnic conflict, Bernard-Henri Levy’s recently published War, Evil, and the End of History relays accounts of southern Sudan identical to  “recent” events dating as far back as 1985, when, as a recent Human Rights Watch report argues, the Chevron Corporation began negotiating with Khartoum to gain rights to oil rich areas in southern Sudan. In a chapter dramatically entitled “The Pharaoh and the Nuba,” Levy recounts the aerial views of southern Sudan in 2001:

We have actually come upon the oil complex, in principle a no-fly zone, of the Greater Nile Petroleum Operating Company, the consortium that includes the Canadian firm Talisman Energy, Chinese and Malaysian interests, and the Sudanese national company Sudapet. And now we’ve had confirmed what the NGO’s, Amnesty International, [and] the Canadian government itself, have suspected for years but which the oil companies and the state fiercely deny: namely that the government is systematically “cleaning” the land, in a perimeter of 30, 50, sometimes 100 kilometers, around oil wells; that the least oil concession means villagers harassed, bombed, razed, and columns of poor people chased away from their homes; in short, that wherever oil is gushing, wherever black gold is supposed to bring happiness and prosperity, the desert increases.

Levy goes on to chastise Carl Bildt, former U.N. emissary in the Balkans, for championing the oil companies’ building of roads and air-strips, which says Levy, are now used for bombing runs.

A 2003 Human Rights Watch report entitled “Sudan, Oil, and Human Rights” confirms the consensus cited by Levy with eyewitness testimony. According to a 1990 account of one Nuer villager, the army drove his family out of their town.

“What happened is the jallaba [Arab, but also the word used for slave trader] just walked into the village and opened fire so everybody just ran … The jallaba are wanting the oil,” he said.

When asked in an interview why he joined the rebellion, another young Nuer responded that Arabs had displaced his family. In return he asked, “Why do people disturb those who do not have guns?”  He answered his own question with one word: “Oil.”

Forgetting politics, forgetting genocide

What we find just behind the quick accusation of genocide by the Bush administration and others repeating shortsighted explanations in the popular media is the pursuit of another strategy of willful ignorance no less reprehensible than the Clinton administration’s denial of the Rwandan genocide. The overly simplistic, but seemingly progressive (at least compared to denial), decision to label the Darfur crisis genocide is hiding the disquieting details of its cause.

Is it possible in an age of almost total worldwide security surveillance that the Bush administration could have overlooked the direct correlation between the building of oil wells and the destruction of villages?

One could simply claim that this is an area outside the United States’ strategic (satellite and human intelligence) purview. But is that really possible given Sudan was one of the first sites of conflict with Al Qaeda?  Would the United States really ignore an Islamic government thought to have ties to the bombings of American embassies?

This seems unlikely. What is more likely is that U.S. involvement in the Sudanese peace process and the heavy investments of BP/Amoco in the Chinese oil companies that are dependent on Sudanese oil has created an incentive for stability at the price of genocide.

In an attempt to give voice to these forgotten or ignored histories, Levy’s book diagnoses the Sudanese conflict as an event outside of history. He refers to the people of southern Sudan as “the Damned.” That is not to say in his critique of Hegel’s and more recently Francis Fukuyama’s grand optimism for the “end of history” that Levy repeats the racist claim that Africa lacks the Anglo-European aptitude to experience and drive history’s dialectical progression. Rather, he suggests the United States and European states and businesses are stripping African events of their historic significance, leaving the living remainder of these “directionless” genocidal equations little more than their suffering to provide content to their existence. And even this we steal and sell to the merchants of 24-hour news feed.

Levy says our language euphemizes this process of dehistoricization and depoliticization as “humanitarianism.” In a brutal description of aid and the purely biological or health approach of current relief efforts as the “forgetting of politics,” Levy writes:

The confusion of humanitarianism with the politics whose place it is taking more and more … How can you avoid the political and make it seem you’re not avoiding it?  How can you abandon the disinherited populations of the Third World to their fate and prevent public opinion, whose emotionalism is familiar to us, from having a sudden awakening of conscience and reproaching their governments? By humanitarianism. A strong presence of humanitarian aid. The transformation of the government itself into a giant humanitarian aid agency. And a media/humanitarian frenzy that will at least have the effect of masking the absence of vision, of aim, of will. Sometimes, though, it’s not so bad; sometimes the humanitarians are the last ones, as I said, to carry the colors of Europe, to defend a certain idea of humanity and human honor and to remember, consequently, the time when it was through politics that one resisted oppression; I have known these kinds of humanitarians; I have seen their work, here, in the Sudan … But sometimes aid is catastrophic; and, without giving in to the temptation of pessimism, it is difficult not to reflect that the whole of the humanitarian apparatus serves to anaesthetize public opinion, to disarm its protests, and above all to discourage the initiatives of those who could be tempted to do more … That is the case here in the Sudan, where the humanitarian machinery has as its prime effect the prolonging of a war that the West has, if it wanted, the financial, hence political, means to stop.

It is this “humanitarian machinery,” as Levy calls it, on which the Bush administration is focusing its efforts. For whatever reason, the resolve to cross the line into the realm of political choices and military options is not present. The decision to do little more than think about the threatening of sanctions or offer to outsource our responsibility to intervene to groups such as the African Union maintains what Levy refers to in a June 24, 2004, interview with Charlie Rose as “a Western belief in two humanities.” One of dignity and one of sub-human suffering.

When Rose asked Levy why he wrote this book, Levy responded, ”No one else did it.” Levy went on to explain that he believes, “It may be because we believe in two Mankinds that Abu Ghraib happens.”  

Engaged journalism, or politics as usual?

Despite, at times, a very Eurocentric account of universal human value, what Levy contributes to the complexity of formulating a new Left response to genocide is a model of engaged journalism. In a moving description of French philosopher Michel Foucault’s brief stint as a journalist covering the Iranian revolutions, Levy describes a form of intellectual intervention in hopes of militating against the voyeurism of modern media atrocity coverage while also fulfilling what he calls the “responsibility of a writer traveling through the black holes.” This act of professional witnessing is for Levy what is truly to be done as an act of conscience.

Although Levy’s attempt to “be there” for the damned of Sudan and other forgotten wars should not be scoffed at, it is not entirely consistent with his nostalgia for the anti-fascist fighters of Andre Malraux and George Orwell, whom Levy would like to in some sense join. Not unlike the troubled — and at times confused — ethical inquiry of Christopher Hedges’ War is the Force that Gives Us Meaning, Levy declares that he is “sick of hearing talk of courage and heroism” in relation to the wars of which up-close seem to lose all meaning. He lambastes the “non-interventionists” of Bosnia and the opponents to the war on terrorism, going so far as to say, “There is one single objective: to stop burying our heads in the sand, to take responsibility of naming the adversary, and provide ourselves with the means to conquer him.” Levy is much more careful than the Bush administration in providing a precise definition of democracy’s enemy so as to distance himself from the Samuel Huntington-inspired Clash of Civilizations theory. But for those who wholesale dismiss the war on terrorism, there is a faint but discernable echo of great ideological — if not religious — war in Levy’s thesis. At his best, Levy contextualizes his definition of militant Islam in terms of a certain connection to a morbid desire for death over social change. In the introduction to War, Evil, and the End of History, Levy writes:

I knew enough about Islam, in other words, to suspect that, at the very least, two Islams exist. The new war, if there had to be a war, would be waged between these two Islams as well as between Islam and the West; and that to accept [Huntington’s] idea of an Islam entirely set against a Satanized West was truly too handsome a gift to give bin Laden and those who resemble him, and for whom he was perhaps only the front man.

Levy goes on to describe the role of an ahistorical interpretation of Jihad that has been politically hijacked by leaders such as Osama bin Laden. It is along these lines Levy is willing to locate his call to action.

However, it is such a call to action that creates Levy’s diametrically opposed theoretical positions: Heroic anti-fascist war and the anti-polemical commitment to witness, which are an aporia that not even Levy’s powers of literary flare and imagination can hide and at times clearly he does not want to hide. What is important about this book and its relationship to the current genocide in Sudan is the very schizophrenic impulse toward these two impossible goals that so aptly demonstrates the current ambivalence of the Left (particularly the anti-empire Left). Those of us who are troubled by the forgotten wars of Darfur and elsewhere are being torn in two by the increasing inconsistency and inadequacy of our anti-imperialist protest against intervention and the visceral call to respond to the Others who must not remain faceless and nameless.

While the Right’s ability to distract us from the greater global atrocities or “international escapades” under the preemptive doctrine can be addressed, what do we do once we possess the knowledge of who must be opposed and who must be joined in opposition? It is the transition away from the naïve politics of global retreat and non-intervention that poses one of the greatest challenges to the possibility of a global struggle for social justice. After all, the removal of the Bushes of the world without the removal of the bin Ladens from the helm of global agenda setting would simply shift the balance from one fatal ideology to another. Given the history of inaction on the part of the Democrats, including Kerry and John Edwards, even the hope of a new administration in the White House will do little to alter the trajectory of the conflict in Sudan and elsewhere. Change must happen domestically, but it must be real change, backed by a committed strategy to oppose the leaders that drive the other side of the conflict.

While Levy does an impressive job of describing the failures of current thinking on global conflict at the level of resolving the Left’s ambivalence, he offers very little. What seems overstated in his account of Sudan is the degree to which the “damned” are cut off from the knowledge of their own circumstances. Levy’s diagnosis of a loss of history may go too far, stripping those whom suffer of the human agency to resist and organize politically. This not only runs contrary to what Levy most admires about Foucault’s dictum, “Where there is power, there is resistance.” It also diminishes the capacity for cooperation between those in the West and the forgotten wars to work together against oppressive governments.

Another kind of European exceptionalism seeps in whereby only those in history can have the means to revolt. I do not believe this is what Levy intends, but intellectually, this is what the reader is left with. Contrary to Levy’s descriptions of hapless suffering, the Human Rights Watch report that seems to confirm many of Levy’s accounts of Sudan displays a slightly different picture of those who are the objects of genocide. In a pointedly self- and globally aware statement, one of the Nuer chiefs, Isaac Magok, responded caustically to a Human Rights Watch researcher in August 1999:

You are from America. We want you to see the location [in the fishing camp where we live]. I have seen on TV a village bombed in Kosovo … The U.N. brought camps and cooked food and then in little time everyone was laughing. Why do they not do the same to us?  Because we are black?  What is wrong with them?  You will see our conditions and then we will talk to you.

If our task, according to Levy, is to return to politics and escape the husbandry of humanitarian assistance, we must listen to the voices of those who suffer and insist on their rebellion. What is lost at times in the narratives contained by War, Evil, and the End of History is an attempt to find such political forces to align with seeing all acts of rebellions within the “black holes” of the planet as historically doomed. This seems to repeat the very forgetting of politics that Levy condemns. It forgets the politics outside the European tradition with which Levy so strongly identifies.

As this article goes to press, the Bush administration is supporting a U.N. envoy to Sudan. This envoy is predominantly an observation group. The question remains: How much more do we need to know? This is, of course, the paradox of Levy’s will to observe. To give names and faces to the Other is of little consequence to any except those who watch and survive at a safe distance. The near-heroic chances being taken by Levy and other journalists willing to break through what New York Times journalist Nicholas Kristof calls the “information quarantine” of Darfur must be reinforced by more than food and clean water. Otherwise, those in the profession of watching will bear a special kind of damnation.

Like the angels of Wim Wenders’ classic 1987 film Wings of Desire, we will suffer a fate “to watch, record, and testify,” never knowing life or those that lived. To know and not respond with the full capacity of what we are capable as people is to sacrifice the very significance of our unique existence. The tempering of our commitment on the basis of national interest and pragmatic economic calculations reduces us to national packs of clever animals. The name of humanity and what it represents must carry a much greater weight than that of a charitable pastime.

STORY INDEX

ARTICLES >

“Sudan: Janjaweed Camps Still Active”
URL:  http://hrw.org/english/docs/2004/08/27/darfur9268.htm

“Crisis in Darfur”
URL:  http://www.hrw.org/doc?t=africa&c=darfur

BOOKS >
Purchase these books through Powells.com and a portion of the proceeds benefit InTheFray

War, Evil, and the End of History by Bernard-Henri Levy
URL: http://www.powells.com/cgi-bin/partner?partner_id=28164&cgi=product&isbn=0971865957

A Problem from Hell: America and the Age of Genocide by Samantha Power
URL: http://www.powells.com/cgi-bin/partner?partner_id=28164&cgi=product&isbn=0060541644

 

Mad dog and glory

A season in the French Football Leagues.

The Corsaires’ defense tightens up against the Meteores and wins the game by two touchdowns. The author is in the center, wearing #50.

I’d only been in Paris for a couple of weeks last September when I started feeling the lonely sting of an expat with no connections to the local culture and a tenuous grasp of the language. By then, I’d seen the Louvre, strolled through the Luxembourg Gardens and sat in cafés eating steak frites and drinking carafes of wine.

The weak dollar threatened to put a premature end to my bohemian lifestyle. I canvassed the Left Bank on foot, gazing into the Café Select (where a destitute Hemingway still found enough money to drink every night of the week in the 1920s), and marveling at Les Deux Magots (where an anguished Sartre spent the German Occupation hashing out existentialism). Both places were now overpriced tourist traps patrolled by surly waiters. Running out of money and feeling slightly disillusioned with life in Paris, I resolved to make a change.

I wanted to meet actual Parisians and practice my French. So, when one day, while sitting on a park bench eating an overly salty egg and cheese crêpe, I came across an ad in an English-language magazine that read: “You wanna play some ball? Contact Cyril of the Corsaires,” I acted.

I wasn’t sure what kind of “ball” was being advertised, and just hoped it wasn’t soccer, since I was slow, uncoordinated, and past my athletic prime.

“We play American football,” Cyril told me in English, with a heavy French accent. “With helmets and pads and tackling, you know?”

Cyril, a brawny 30-something with a receding hairline, was the president of the Évry Corsaires, a semi-professional football team in Paris. He picked me up at a Métro stop on the Périphérique, where Paris officially ends and the dreary suburbs begin. We drove out to Évry, one of the grittier outlying suburbs populated mostly by North African immigrants, to play flag football on a Friday evening. Flag was just for fun, Cyril said. The Corsaires’ real game was full-speed, bone-crunching football américain.

“Oh, that’s serious,” I said.

“Where are you from?” he asked.

“I grew up in Oklahoma,” I replied. “The heart of football country, in other words.”

“Sure, yes, but my favorite team is zee Packers, from Green Bay. I’m sure you can play with us. Offense and defense, maybe.”

Cyril went on to explain that France supports a fledging network of approximately 16 semi-pro teams that compete each year for the “Casque d’Or,” or Golden Helmet. The Corsaires played in the second division of the Fédération Française de Football Américain (F.F.F.A.), but could move up to the first division if they won the title that year. If this happened, teams from N.F.L. Europe would start offering Corsaire players professional contracts. To this end, the team had recruited Xavier, a back-up quarterback from the French national team, and Cyril was scouting American talent.

Teams in the French leagues are organized as private clubs that function as community centers, like the Rotary Club or Lions’ Club. The players, ranging in age from 18 to 45, do charity work and put on local exhibitions demonstrating the complex rules of the game to skeptical onlookers, often immigrants from Algeria or Senegal. Some clubs even pay players and coaches, and have cheerleaders and private sponsors. Still, the whole thing seemed quaint and innocent, like a 1950’s-Beaver Cleaver version of football, light years away from the sex, drugs and sleaze of the sport’s current U.S. incarnation. Players in France wear letterman jackets emblazoned with their positions and nicknames — “Warrior” or “Screwdriver” or “The Cramp.”

The first time I suited up for a Corsaires practice last September, I was overcome with emotion. Jogging around the field in full pads was, for me, the equivalent of Proust’s madeleine: suppressed memories from my Oklahoma youth came rushing over me. The smell of freshly cut grass, musty shoulder pads, and the first hints of autumn weather sent me into a reverie.

“Knock that man’s dick in the dirt!”

Until I was 14, my only goal in life was to play football for as long as it was physically possible. For me — as for most of my friends — this meant (ideally) high school and college ball in Oklahoma and pro ball with the Dallas Cowboys or Houston Oilers. I matured early and by eighth grade was a relatively bulky six-foot-tall starting middle linebacker. (I haven’t grown since.) By age 13, I was being recruited to play for a small Catholic high school and was told that I might even have a shot at a Division I scholarship for college. All of this, of course, depended on my dedication to football.

At this young age, football was life — not only for me, but for most of the adults in the community. The Oklahoma oil patch had gone bust in 1986, the local economy was in tatters, but these were the glory years of Barry Switzer, the legendary coach of the Oklahoma Sooners. In a dead-end town on the Bible Belt at the end of the Cold War, high school football provided a reason for hope, and everyone wanted to be a part of it.

My junior high team, the Edison Eagles, for example, supported a phalanx of unpaid assistant coaches who ran us into the ground twice a day during August: one practice at 7:30 a.m., followed by another after school. The coaches pushed us until someone vomited or suffered heat exhaustion. Water and bathroom breaks occurred rarely — usually only once a practice. If someone didn’t sacrifice his barely pubescent body on a tackle, one of the coaches would be in his face immediately.

“Knock that man’s dick in the dirt!” Coach Carl liked to scream, making the adolescent boys blush.

Kids — even academically successful ones — were encouraged to repeat eighth grade to gain an extra year of “maturity” before moving on to high school ball, where the stakes were even higher. Despite it all, I loved the game.

It was only at the Catholic high school’s varsity level that things went too far. Priests visited the locker room to bless our team before games, and to assure us that we were morally — and physically — superior to our opponents. At the same time, the starting linebacker and fullback terrorized the younger players with frat-like pranks usually involving threats of anal penetration. All of this was tolerated, and even encouraged by school authorities, as a rite of passage. The hypocrisy, the stupidity, the homophobia — it was all too much for me and I quit halfway through my sophomore year.

I put all this history aside for my season in the French leagues. At that first practice in Évry, Cyril put me in the end zone to return a kickoff. I felt a surge of adrenaline as I waited near the goal line for the whistle. Suddenly, I saw the pigskin hanging in the air above my head, secured it in my hands and sprinted up-field, breaking arm tackles and jogging triumphantly the last 20 yards into the opposite end zone. And this was just the first practice!  

As I trotted those last few yards, I imagined my redemption as a football player in this foreign land. “You will be a good linebacker,” Cyril had said prophetically. “And you will be called ‘Mad Dog.’”

Who needed a state championship in Oklahoma when I could have a Golden Helmet in France? I thought about the letterman’s jacket I never had in high school, with the words “chien fou” stitched across the breast.

The author with a broken left finger after a game in Chateauroux, France.

For the team

Practices started in early autumn — a glorious time in Paris — and we were expected to report every Tuesday and Thursday from 8:00 p.m. to 10:30 p.m. for the next five months. My initial feelings of imminent redemption gave way to confusion as the defensive coordinator, Jean-Pierre, gave me a weighty playbook to memorize. It had blitz packages and coverage schemes, audibles, zone and man defenses.

“You will play my way, or you won’t play at all,” he told me. “And you must learn it in French.”

The physical training proved difficult as well. There was no weight room, so we used random objects — and each other — to increase strength. My legs buckled as I tried to squat Arnaud, a 200-pound running back, on my shoulders. We had orange cones for agility drills, but I tripped over them. We had sleds for blocking and tackling practice, but I couldn’t move them. My helmet never fit properly and gave me headaches. I had to relearn how to tackle with my head up, lest I spear someone and break my neck. When I tried to cover wide receivers in man-to-man defense, another linebacker joked that I ran like a crab. The name stuck, and for a while I wasn’t “chien fou” but “le crabe.”

The weather turned cold and rainy around the end of October and I routinely left the practice field feeling cold, sore and exhausted. On these evenings, I usually headed to the team bar next to the practice field where the team ate olives and cheese, accompanied by wine and beer. When our de facto cheerleaders — the wives, sisters and girlfriends of my teammates — showed up, someone would put on Barry White’s greatest hits, and the bar would go crazy as people danced around our dirty clubhouse. Sometimes a player would bring a videotape of a recent N.F.L. game, and it always seemed so foreign, like watching a game of cricket in Texas.

I told some of the players that this whole routine was unique, very French.

“In the States, football is a spectator sport, a passive leisure activity, or an excuse for beer and BBQ,” I explained.

“You mean you would not put on the pads and play in your own leagues?” a linebacker called Dub asked me.

“Of course not,” I said. There would be fights, injuries, lawsuits, hurt feelings. It would be anarchy and bloodshed. We leave the game to the professionals.

“In France, we are the professionals,” someone else chimed in.

Each football team in the F.F.F.A. is allowed only three American players, and taxes of about $300 per player are levied on teams that employ American ringers. Many of these are former college players not skilled enough to make it professionally in the States or N.F.L. Europe, but still starved for the game they grew up on. Some are paid, but most do it for the love of football. Some come from major university programs, where the game is big business; others have never even played before.

The only other American on my team had never played a down of football in the United States but was now the star receiver on the Corsaires. In fact, Daniel didn’t even follow the game back home. One day, on the commuter train out to practice, I tried to engage him in a discussion about the N.F.L., but he only shrugged his shoulders.

“I follow soccer here,” he said. “I didn’t even watch the Super Bowl this year.”

I asked him why he played such a dangerous sport that he didn’t even follow. “You can be a star in France,” he replied. “In the States, you’d be nobody. So why not?”

The rest of the players came from every imaginable socio-economic and ethnic background. There were immigrants from West Africa, Vietnam, and Algeria. There were poor guys from the neighborhood who’d started playing out of curiosity. There were well-to-do French white guys who had studied at elite universities in the States and had picked up a passion for football there.

Then there were guys like Buko, who looked imposing and burly, like an American football player should look. He stood about 6’3’’, ran like a gazelle, and wore shiny blue leggings in lieu of socks. Buko spoke perfect black English without ever having set foot in an English-speaking country.

One day I asked him how he spoke English so well.

“I watch a lot of movies and shit,” he said. One of his favorites was the feel-good Disney picture, Remember the Titans.

In the film, Denzel Washington plays an African American coach for a football team in the South. The team has just been integrated and the racial strife that plagues the region is magnified among the individual players. Eventually, Coach Denzel brings everyone together and the integrated team wins a state championship. It is a happy ending that stresses team solidarity above individual difference, equality of opportunity above birthright. These are the values, incidentally, of the French Republic: Liberté, Egalité, and Fraternité.

French football, much more than its American counterpart, seemed to embody these Enlightenment values. Despite the ethnic and class differences on the team, everyone seemed to get along.

Buko was the spiritual leader, and I couldn’t help but get emotional when he led a team chant that he had lifted from Remember the Titans:  “Everywhere we go/ People want to know/ Who we are/ So well tell them …We are the Corsaires/ The mighty mighty Corsaires!”

We chanted this as we jogged around the field before our first game, intimidating our opponent, Les Templiers, from another Paris suburb.

It worked — we won the game by two touchdowns. Our quarterback, Xavier, threw pinpoint strikes to Buko, the tight end, and Daniel, the wide receiver. They ran over the diminutive cornerbacks and safeties, guys who had plenty of speed but no knowledge of tackling. Our running back, a 34-year-old bald guy with no neck, and thighs like tree trunks, dragged their linebackers 10, 15 yards a carry and steamrolled their defensive backs.

Our defense wasn’t such an unstoppable force. The defensive backs didn’t seem to understand the concept of pass interference, and allowed the other team to move up and down the field on penalties. As a linebacker, my first assignment was to stop the run game, and this proved frustrating. I could see plays develop in the backfield, but just as I was about to tackle the running back, I found myself knocked backward by an offensive lineman. My highlight came when, dropping back into zone coverage on a pass, I deflected a pass to the tight end. Jean-Pierre, the defensive coordinator was livid and pulled me out of the game.

“On 53 punch, you are supposed to blitz the QB. Like I said — if you don’t respect my play-calling, you don’t play at all!”

A crowd of about 100 spectators braved the miserable rain to watch the Corsaires destroy the Templeriers on their home turf. For the most part, the spectators looked confused or disinterested, and even some of our own players had trouble deciphering the penalties. I explained to a second-string tackle that the team kicking the ball off can recover it only after it travels 10 yards. I watched the line judges consistently forget to change the down marker and move the chains. No one seemed too excited about anything. As a football fan, the experience was maddening.

When too much Fraternité is a bad thing

As autumn gave way to winter and our gridiron turned into a mud pit, the practices became miserable, boot-camp-like affairs. The dreary month of December brought a cold, steady rain to Paris and I began to realize that I was hopelessly undersized to play defense. The low point came shortly before Christmas, when an offensive tackle named Bob knocked me to the ground and then sat on me in the chilly mud.

In addition to my on-the-field frustrations, off-the-field festivities became increasingly ugly. The problem on the Corsaires, as it turned out, was not Liberty or Equality, but Fraternity.

Quite literally, this was fraternity of the Animal House variety, even though most of the players were well into their 30s, many players supporting families. They were grown men with responsibilities and serious jobs, not the kind of people you would imagine behaving like frat boys at a keg party. Some of them were intellectuals, capable of passing time on long bus rides by discussing world affairs; perhaps that’s why their dissolution into American-style meatheads surprised me.

Things came to a head the day that the starting quarterback, Xavier, lectured me about the fragility of the world’s oil supply.

“I don’t understand how you Americans can drive these huge cars, these SUV things,” he said. “Do you know that if you continue to consume oil at the current rate, the world’s supply will run out in twenty years? How can you, in good conscience, drive a car like that?”

I was stumped. This was not the kind of post-game talk I expected to hear.

“You know, it’s not that the French hate Americans,” he continued. “It’s this Manichean, dualistic view of the world your president has.”

By this time, Xavier was turned around and addressing the whole bus. A journalist from a Parisian daily was riding with us, and watched the Americans’ response closely.

I tried to be conscientious, I said. I rode my bike whenever possible. I recycled (sort of).
I recognized that the world wasn’t divided into good and evil, or black and white. I felt I had to say something conciliatory, something diplomatic to make up for all the bad blood caused by the Bush administration.  

Just then, a chant came up from the back of the bus. “Xavier! Xavier!” the crowd intoned.
The unsuspecting quarterback was being dragged to the back of the bus where a group of the largest Frenchmen I have ever seen waited for him. Whatever was happening didn’t look like the logical continuation of our discussion of American foreign policy.

A veteran lineman explained: “It is the bizoutage that all new players — including yourself — get when you join the Corsaires.”

Daniel translated for me: bizoutage meant hazing.

The back of the bus erupted in laughter as Xavier screamed, “No! Not the tape!” The ritual involved a lot of Ben Gay in the groin area and athletic tape below the belt. A hirsute man, the quarterback cried out in pain. So much for the pacifistic French you hear about on The O’Reilly Factor: these guys were sadists!

But the mob couldn’t be quelled by just one hazing. “The American! The American!” the crowd began to chant. I recalled my final decision to quit high school football after a frighteningly similar scene.

“Uh, I’m injured,” I said. “I can’t because of my finger. You see, it’s broken. I need ice and rest. Please. I’ll let you guys do the bizoutage next week.”

Part of my plea was true. I had actually broken my finger in the game, despite my limited playing time. At the middle joint, the finger bent into a bizarre 45-degree angle. It was red and purple and swollen. The next part, however, was a lie:  there would be no next week for me. My football career was over, again.

I found myself in the Luxembourg Gardens a few weeks later, noticing the meticulous attention that the groundskeepers paid to every sculpture, every plant, every tree, even in the dead of winter. No one dared to step on the grass that the gardeners in their lime-green suits had dutifully maintained. This part of Paris felt a world away from Évry and the Corsaires. It was quiet and civilized.

Some things, I decided, were best left to the professionals.

STORY INDEX

BOOKS >
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TOPICS > CLASSIC FOOTBALL LITERATURE

Friday Night Lights
by H.G. Bissinger
URL: http://www.powells.com/cgi-bin/partner?partner_id=28164&cgi=product&isbn=0306809907

Paper Lion
by George Plimpton
URL: http://www.powells.com/cgi-bin/partner?partner_id=28164&cgi=product&isbn=1592280153

North Dallas Forty
by Peter Gent
URL: http://www.powells.com/cgi-bin/partner?partner_id=28164&cgi=product&isbn=1894963024

TOPICS> AMERICANS IN PARIS

Paris to the Moon
by Adam Gopnik
URL: http://www.powells.com/cgi-bin/partner?partner_id=28164&cgi=product&isbn=0375758232

A Moveable Feast
by Ernest Hemingway
URL: http://www.powells.com/cgi-bin/partner?partner_id=28164&cgi=product&isbn=068482499x

Tropic of Cancer
by Henry Miller
URL: http://www.powells.com/cgi-bin/partner?partner_id=28164&cgi=product&isbn=0802131786

 

Stealing his veins

As a college student, Jason tried to keep cool as he battled Hodgkin’s disease. But on the occasional bad day, his mask slipped and his friends realized just how much he was suffering.

Jason enjoys a light moment after finishing chemo on January 22, 2004. (Photo by Marley Seaman)

Jason kept quiet when he learned he had cancer.

He told his roommate and a few close friends, but didn’t want everyone to know yet. He didn’t want the good wishes and the condolences and pats on the back and the awkwardness that came with the attention. Steeling himself for a long battle and getting well were enough to worry about. But when the school year resumed, Jason wasn’t there. The news spread quickly.

It was late October when we saw Jason next. He was gaunt and practically bald, but smiling and, like a good theatre major, he held dozens of us captive with his story: the shock of finding out, his fear of dying, and his ultimate optimism. Jason called himself “lucky” to have Hodgkin’s disease because it was so treatable. His visit felt celebratory.

In January, he returned to school, taking classes and trying to live a normal life between chemotherapy treatments. A few weeks into the semester, I accompanied him to his chemo session to take pictures. I learned that the struggle was far from over. Jason was going to live, but the cancer would fight him every step of the way.

It began as a routine visit. I met Jason and a family friend named Susie at the medical center. His health was good, and his sense of humor intact. He kidded that only he could gain weight while battling cancer.

Jason and the nurse, a pretty Asian woman named Tess, narrated for our benefit as they prepared Jason’s arm for the array of chemicals. Tess slathered his arm in iodine and began a saline drip.

Then the tube in Jason’s arm started bubbling. It was a bad sign. They tried two more veins, but neither was useable. Months of powerful chemicals flowing through his veins had caused them to collapse. There would be no treatment today.

Jason was stunned. It was so difficult for him to gear himself up for these grueling treatments. Each one sapped him of energy for four days. The only relief was that with each completed treatment, he came a step closer to finishing. He knew he would not take that step today, and he began to cry. His dark brown eyes full of pain, he blocked his face with his hand as he sniffled. In a few minutes, he’d pulled himself back together, ready to struggle on.

Tess explained that he needed to go to a hospital in Chicago to get a catheter inserted into his arm, bypassing his fragile veins. Jason didn’t seem to care about the details — none of it mattered as along as he could get another session behind him immediately. As we left the medical center, Jason called his mother and relayed the news. He stayed calm, focusing on the procedure and tomorrow’s treatment.

Back in his dorm room, Jason’s fury burst out. He kicked the walls and complained to his roommate about “My fucking veins,” and how they were damaged like those of a heroin addict.

The anger revealed his feelings before he’d gathered his optimism. He couldn’t hide it now. Most dominant was the frustration: In his voice were hundreds of hours spent wondering why this had to happen to him.

The five-year survival rate for Hodgkin’s patients was 95 percent. At age 20, he’d had to contemplate being in that other 5 percent. What he had told us about luck was true, and he meant it. But he cannot have felt lucky back then, hearing about the cancer spreading through his lymphatic system and about the side effects of chemotherapy.

By winter, his eyebrows, mustache and goatee, like the hair on his head, had turned to wisps. As the treatments progressed, he felt worse. The recovery periods following the chemo got longer and longer. Weekends were a distant memory; it took nearly a week to fully bounce back from treatments, which left him seven days until the next treatment. The chemicals began to make him throw up one week, and that pattern would continue.

Jason’s buoyant nature made us overlook the difficulties he faced. He did not deceive us, but we saw mainly the optimism — not the arduous process by which he had reached it. We took it for granted.

The day after the failed chemotherapy attempt, Jason and Susan were late for his next treatment session. When he got there, he had a bandage on his left arm. A wire now ran from just above his elbow into his heart. The catheter extruding from his sore arm was a mix of clear tubing and blue and white plastic, a small monstrosity he would cover with a slice of a cotton sock. The cancer within his body now had an obvious external marker. He said he would have it removed the day after his last session, but it stayed in his arm for weeks after that.

Jason apologized again and again that the treatment was boring. Compared to the ordeal the previous day, this session was a gift. The doctor and nurses came back on schedule to make conversation and change the I.V. medication drips. Jason complained bitterly about Adriamycin, the powerful chemical that made him vomit the previous week.

Adriamycin was a radioactive, candy red color. It looked strange vanishing into the veins of a human being — it would have been more in place attached to a car in a body shop. Its taste permeated Jason’s mouth from when the second the drip started until it was unhooked. He screwed up his face and sipped on a soda to counteract it. The treatment passed comfortably.

We walked home, and he collapsed for the weekend.

Jason allowed me to tag along for his chemo session two weeks later. It, too, was uneventful, and he slept for its last hour. Two weeks later, parents, stepparents, and friends flew into town for his last treatment. His girlfriend decorated his doorway and hall with banners.

“Last treatment ever!”  

“NO more weeks!”  

There was even a cake that read “Fuck Cancer.”

The story isn’t over, but the news is all good. The radiation therapy, sunburns aside, did not cause Jason much trouble. In the spring, he continued taking classes and directed a production of Taming of the Shrew.

He will need regular checkups for the next few years, and though he cannot overlook it, the chances of his cancer recurring are very low.

He is 21 and healthy, and much the same person he was before, though having his life so far out of his hands has made him a little more patient with situations he can’t control.

Even if he doesn’t know it, through his illness he has found a real strength — the kind found by plumbing the depths of one’s own weakness — that will never leave him.

STORY INDEX

TOPICS > HODGKIN’S DISEASE

How Hodgkin’s disease is diagnosed
URL: http://www.cancer.org/docroot/cri/content/cri_2_2_3x_how_is_hodgkins_disease_found_20.asp

Information on Hodgkin’s disease
URL: http://www.cancer.gov/cancerinfo/wyntk/hodgkins

Treatment of Hodgkin’s disease in adults
URL: http://www.cancer.gov/cancerinfo/pdq/treatment/adulthodgkins/patient/

 

Destroyer of myths

Diagnosed with leprosy, a young woman fights back in The Pearl Diver, a debut novel which plumbs the depths of the human spirit.

(Courtesy of Random House)

Unless I illuminate myself
Like a deep sea fish
Nowhere would I find even a glimmer of light.

  —  Akashi Kaijin, from the tanka collection Haku Byo, 1939

In Jeff Talarigo’s affecting debut novel, The Pearl Diver, a 19-year-old pearl diver faces a diagnosis of leprosy that threatens to obliterate her life. When the authorities learn of her diagnosis, the pearl diver is promptly arrested, then forced into exile and intimate contemplation of the devastation her body must soon endure. Shipped off to the island leprosarium of Nagashima, the pearl diver loses everything  —  home, family, career  —  even her name. The name she chooses, Miss Fuji, evokes a treasured memory of climbing the mountain with her beloved uncle, the one relative who stands by her and will ultimately give her one of the greatest gifts of her life.

As a writer, Talarigo is above all a destroyer of myths. Glamorous images summoned up by the mention of pearl diving  —  slim, beautiful young women silently plunging into the deep sea  —  quickly dissolve. The work, as Talarigo describes it, makes “scarred, thick-bodied women.”

No amount of fresh water can wash the smell of the sea from the divers’ skins and even hot summer days will find their limbs half-frozen for hours. A descent of 60 feet under water contrasts strikingly with its corresponding ascent:  “Going down is like autumn into winter. Winter into autumn back up, but the thaw is very slow.”

Yet, the protagonist of the The Pearl Diver finds a deep satisfaction in her work that Talarigo captures in an early description of the act of diving:

“Her arms tight against her sides, her feet swept in slow, steady strokes; waves tossed and jolted her body, the water dimmer, duller, murkier with each foot she went. Sixty feet down, the light was that of an autumn’s half-moon. And down there, for the first time, she moved her arms from her side, doing handstands under water, feeling for the familiar.”

The shape of Talarigo’s story follows that of the dive itself. Miss Fuji’s new life will take her deep into darkness and find her fumbling blindly for strength, hope, and wisdom. She is on the verge of drowning before, at the last possible moment, she sweeps up into the light.

In Miss Fuji, Talarigo has created a character readers will be drawn to as moths to the flame. Never more than an ordinary Japanese woman, Miss Fuji’s fortitude and spirit enable her to endure almost unimaginable suffering and loneliness. She is luckier than many of her fellow lepers, for a new drug halts the disease’s progress through her limbs. But her luck will isolate her. Young and relatively vital, she spends her days caring for those whose bodies the disease has already ravaged. She has become both “parent and newborn,” “patient and staff.” A dual identity quickly begins to seem like no identity at all. She cannot fully share in the ordinary lives around her. The fisherman who first rows Miss Fuji to the leprosarium throws away the rice balls she gave him while she looks on. She is also alienated from the older lepers, who depend on her capable patience. And the sea, the love of her past life and a constant presence in her new life, at first seems lost to her.

From the other patients  —  Mr. Shikagawa, a tanka poet; Miss Minn, a storyteller; Mr. Yamai, the leader of a reading group; and others  —  Miss Fuji learns how to endure, but the relationships are always more complicated than that of mere teacher and student. This novel is no Karate Kid. Its pearls cannot be summed up with anything as simple as: “Wash on. Wash off.”

Relying upon only small words and simple gestures, Talarigo manages to suggest for each of his characters a rich inner life and a sense of life in its fullness. These are people who have lived, loved and suffered but continue to hope and desire.  

Talarigo doesn’t have quite the same success with the leprosarium staff, but nor does he seek it. They are faceless monsters stricken with leprosy of the soul. Their unyielding dominance will brook no resistance and their cruelty betrays no ambivalence. Simple scenes convey the consequences of association with leprosy to far greater effect — a mother, terrified to lose her children, tears them away from the sea shore where they have been doing little more than waving to the pearl diver; a noodle shop goes out of business merely because customers will not frequent a space that has been contaminated by a leper’s visit.

The stigma of leprosy is so great that even as the medical community’s knowledge becomes more sophisticated and new drugs are developed, the Japanese practice of isolation and sterilization (though doctors had known since the early 20th century that leprosy was not an inherited disease) continued and would not be formally discontinued until 1996. The stigma of the disease remains potent in present-day Japan.

Talarigo has chosen to structure the story around a collection of artifacts — money, a rusty farm sickle, maps, a tube of burn cream — each of which evokes specific episodes in Miss Fuji’s life, themselves evoking the stages of the leper’s life in 20th century Japan. Only at the end of the novel does the rationale behind the structure become clear, as the tale’s fictional narrator (and in this instance, archivist) reveals herself. The choice of structure enables the author to insert into the text general information about lepers, leprosy, and evolving treatment policies that place the lives of Miss Fuji and her fellows in historical and ethical context. However, frequent breaks in the text interrupt the narrative flow and create distance between the reader and the protagonist. The lives of the lepers take on a sense of inevitability and futility that somewhat muffles the story’s emotional immediacy, if not resonance. The story of the characters’ lives never erases, even for a moment, the fact of their imminent deaths.

Still, Talarigo’s prodigious accomplishment may be subversion of the convention of the sufferer’s tale, successfully uniting the truths of life and literature in a way that is not often possible. Talarigo does not reduce suffering to a mere external obstacle to be pushed aside or stepped over; it is, in life, the stake that directs the vine’s growth for better or worse. Miss Fuji’s suffering is part of her and it irrevocably transforms her.

Miss Fuji does find a life beyond suffering, but she can never fully overcome the effect of that suffering. The human spirit is no sword forged of adamantine steel, invulnerable to the elements, but a blade of grass, an autumn leaf or a cherry blossom, all easily crushed. Miss Fuji’s poignant victory at the end of the novel is very much her own, though she will never fully recover from the battle.

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The Pearl Diver

Excerpt from the book

Interview with the author and brief excerpt read by the author

 

Portrait of a child soldier

2004 Best of Image (tie)

An interview with artist Josh Arseneau, who painted portraits of Liberian youth for his Pacific Northwest College of Art senior thesis, one of which was exhibited at InTheFray’s recent benefit in Manhattan.

Click here to enter the visual essay.

According to Human Rights Watch, the largest human-rights organization based in the United States, there are as many as 300,000 children participating in armed conflicts in more than 30 countries worldwide. While many are forcibly recruited, others are pushed into conflict by economic or social reasons. Deadly weapons, such as AK-47s, are placed in the hands of children only eight years old. Last summer, news of Liberia’s civil war made American papers, bringing with it photographs of children who had become involved in the conflict. Inspired by those images, artist Josh Arseneau immersed himself in the subject of child soldiers, which became the focus of his senior thesis. The result is an engaging portfolio of artwork that portrays the plight of these children in West Africa through various media. In the process of exploring cultural connections with his subjects, Josh revisited his own childhood to compare and contrast it with the lives of the child soldiers. In doing so, he discovered points of commonality through human emotions and symbols of childhood, which he shares with viewers through his work. Josh recently graduated from Pacific Northwest College of Art, where he received the C.S. Price award for best painter.

The interviewer: Kenji Mizumori, InTheFray Campus Liaison
The interviewee: Josh Arseneau, artist