Friday, October 24, 2008

If you're not subscribing to Poky's daily

you missed this a week or two ago. Hot damn my fella can write! In the paper, it ran with photos by award-winning photo journalist Smiley Pool.

(many thanks to Ian Fennell, managing editor at the Idaho State Journal for the opportunity)

The Baylor Children’s Center waiting room fills to capacity by 8 AM. Its vaulted ceiling and tasteful artwork do little to camouflage the overcrowding. So many of the children are stricken with diarrhea and vomiting that the room’s central feature is a large red plastic bucket continually refilled with oral rehydration solution. In fact it is not so much a waiting room as a bus terminal that happens to be the entry point to Malawi’s premier center of pediatric HIV care. First time visitors invariably stagger when they realize that almost every person on the benches is infected with HIV. And those who are not infected are the aunts and uncles, grandmothers and grandfathers now caring for a generation of orphaned children.

In a country where almost 15% of the population is positive and the average life expectancy has dropped to below 35 years, HIV has bullied Malawi into submission. Now a decade deep into the crisis, the nation is starting to fight back.

The two newest and nicest buildings in Malawi’s capital city, Lilongwe, are both dedicated to HIV. The National AIDS Commission occupies a brightly mirrored glass structure surrounded by manicured lawns. The other, the Baylor Children’s Center, sits kitty corner to Kamuzu Central Hospital, Lilongwe’s main referral center. The two’s juxtaposition illustrates where Malawi has been and where it could be going.

You could claim Kamuzu, a place where you are reminded that smell is the most powerful of senses and also the hardest to forget, sits at the front lines of Malawi’s HIV crisis. Fully 70% of the adult patients and almost one-third of all infants have HIV. But for too many patients Kamuzu is actually the end.

Two years old, Baylor retains the freshness of energy and big money. Exam rooms are indistinguishable from any pediatrician’s office in developed countries. The young, imported physicians Baylor employs decorate them with toys from their last trip home.

Shira is typical of many of Baylor’s patients. Until this year, she had never been sick, but by the time she arrived, she had been seen seven different times at the local health center for fever. Her decline was now accelerating despite a range of treatments.

Shira’s mother knew her own status, positive, and also her father’s who had died the year before. But denial is a basic instinct that is only strengthened in the face of repeated tragedy. Enabled by health care workers who had pushed--but not too hard--for the child to be tested, Shira’s mother had ignored the obvious. HIV comes to a boil slowly over years. Its gradual consequences are often missed or disregarded until it overwhelms the body’s immune system.

Like most parents, Shira’s mother stoically received the test result she already knew. Her eyes quickly darted to the ground. Complete silence followed. Outsiders explain this as cultural. I wonder if it is a protective response: quick acceptance of what must seem an inevitable part of life.

Shira will wait several more weeks to start her HIV treatment. Before her mother is allowed to give the medicines to her daughter, she will be required to attend classes, meet with counselors and physicians multiple times, and demonstrate an understanding of the treatment her daughter will take for the rest of her life.

At first, I thought it cruel to make patients like Shira wait for life sustaining medicines. The medicines, known as highly active antiretroviral therapy or HAART, will transform her HIV into a chronic but manageable illness. It is an understatement to claim HAART is life altering.

But taking HAART is also complex; even more complex are the politics surrounding it. So much so, Malawi has only been offering HAART to children for three years. Three years ago, Shira would have died within months.


When I started medical school in 1998, America was crippled by the AIDS epidemic. Parents were still boycotting schools if one of its students were infected with the virus. Medical professors filled their lectures with HIV, and AIDS patients packed the hospitals of major cities. We learned more about AIDS than any other disease.

Today medical students learn about HIV from a decidedly different perspective, and absent the urgency of crisis. Ignoring that we have yet to develop a vaccine which prevents transmission of HIV, treatment of the virus stands as a triumph of modern medicine. HAART can make HIV undetectable in the body, and patients can lead essentially normal lives. Infected American mothers have less than a 2% chance of transmitting the virus to their babies. This is the HIV of America. Sub-Saharan Africa tells a different story.

Drug companies and policy makers resisted sending HAART to countries like Malawi during the late 1990’s and early into this decade. Various excuses were offered, but most revolved around the thought that African patients could not be trusted to reliably take their medicines. Since even a few missed doses a month makes the virus resistant to medicines and much harder, if not impossible, to treat, executives convinced themselves that withholding treatment from a continent was paternalistic benevolence. In retrospect, most everyone recognizes such rationalizations as greed cloaked in the patronizing remnants of colonialism.

I recently met an orphaned 14-year-old who had been on HAART through the Baylor Children’s Center for two years. Now living with her uncle, Limbandi had just finished Malawi’s equivalent of junior high and was waiting on her final exam scores, which would determine the high school she attended. Industrious and resourceful in ways only survivors are, her future plans included studying to be an engineer at a foreign university.

Like most adolescents who were infected at birth, Limbandi wears her HIV status conspicuously. She is stunted, maybe the size of an American ten year old, and her face is covered with flat warts. Scars from a prolonged case of shingles cross the right side of her face and extend into her eye. But these are past problems. Instead of focusing on her illness, Limbandi is now able to concentrate on the universal theme of adolescence—fashion. She came to her appointment wearing a perfectly fitted leather jacket and brownish wig, both of which are currently the rage in Lilongwe.

What so many thought would be too complex for the average African patient to understand, Limbandi finds absolutely simple. She knows that by taking a single pill twice a day and never missing a dose she is no longer sick.


Yet HIV treatment in Malawi is complex. Not because the patients are too uneducated or simple to understand, but because HIV is not simply another epidemic.

HIV amplifies all of the other diseases of poverty. Combating malnutrition, which in the past consisted largely of providing food, now is also a fight to rebuild the body’s immune system. Tuberculosis rates skyrocket as HIV spreads. At a minimum, one-third of those with HIV also have TB in sub-Saharan Africa, and recent reports put that number much higher.

Hospitals, already overcrowded, are now flooded with patients. At one regional hospital, a single pediatrician oversees the care of 200 patients per day. She describes stumbling over children who sleep on the floor during malaria season when the children’s ward census often doubles. HIV is not the only culprit but it is clearly the major contributing factor.

HIV also accelerates poverty among the already impoverished by disproportionately attacking young adults. In fact, 1 in 4 working adults in Malawi are infected with HIV. As the workforce dwindles so does Malawi’s tax base. In a country that already struggles to feed itself annually, HIV treatment must compete with every other crisis for attention and resources.

The issues surrounding breastfeeding in positive mothers illuminates both the effect poverty has on HIV and the effect HIV has on poverty. HIV is transmitted through breast milk, and breastfeeding essentially doubles the risk of an infant acquiring HIV. Because of this, in developed countries, positive mothers are counseled not to breastfeed. However, in developing countries, formula fed babies are actually more likely to die. Sadly, the best way to prevent transmission of HIV actually increases an infant’s chances of dying from other diseases.

Breastfeeding is but one of the many compromises made in combating HIV under the stresses of poverty. If only treating HIV in Malawi were as simple for the nation as it is for its individual citizens. Limbandi takes one pill twice a day and her life is now transformed. Every morning, the waiting room fills with similar patients seeking such hope. They know that treatment is available and wonder why it has yet to reach them. If we don’t offer it to them now, we will lose an entire generation waiting for an answer.

Thursday, October 23, 2008

Sleep is for the birds

At some hour last night, I heard a little cry from the next room over, then the quiet slap of Scout’s small feet as she came into our room. It’s a testament to just how tired he is that Andy is not enforcing the “sleep in your own room” rule. He pulled her up and she climbed over him so that the lineup in our double bed was now: daddy, Scout, Finn, mama. Once situated, tucked under Andy’s arm, she reached out take hold of Finn’s hand, stilled, and fell back asleep.

We’ve been playing the bed shuffle game every night since we got here, since that first night when I was so freaked out by the darkness of unfamiliar night and I wanted all my chicks nowhere else but under my wings.

That night every sound was sinister, and all the warnings and suspicions and fears I’d absorbed and recycled in our planning and preparation to come here, clotted and lay thickened on my sleepless chest. What might just be the quiet scrape of dry avocado leaves on pavement was more likely the rasp of huge insect legs, or the scuff of an intruder’s heel. Every creak and groan of our house contracting in the cooling air made my heart freeze momentarily. I heard a bruised, tapering canine whimper somewhere nearby and knew someone ruthless had just picked off one of the neighbour’s dogs so he could come in and…

I forced myself to follow every morbid line of thought to its bloody conclusion so I’d be prepared to protect the kids.

The only way I can describe my sate of frozen alertness that night is to compare it to the way I used to lie awake in bed after I woke up from a nightmare as a child. Any movement would resurrect whatever evil had woken me up in the first place; there was nothing to do but lie there and listen in stiff terror, trying to keep my chest from moving as I breathed.

Then I heard a twitter, and all at once a rush of calls and chirps; and hopefulness arrived with feathers. It was impossible to stay afraid during the dawn bird chorus. Soon the sky was getting lighter, and then suddenly the sun was streaking orange light through our curtainless windows.

The bed shuffle now is more about nighttime nursing and teaching Scout to sleep through the night again. It doesn’t take a parent to tell you (though every parent can attest) that lack of sleep can really discolor reality. The basics of happy family living, let alone doing something Good for Humanity can seem unfindable in the dark of exhaustion.

Last night, peeking out from sandpaper eyelids, I looked down at my family before I relinquished our unintended family bed to go sleep in Scout’s now vacant one with Finn for the last few hours of night. Like some “armpit snuggle” variation on nesting dolls, they were tucked one into the other in descending order; Scout’s head snuggled in Andy’s, Finn’s head in Scout’s. Keeping each other close under tight, sleeping wings. Feathered things after all.

Sunday, October 12, 2008

This is like summer camp

-Wood smoke hangs in the damp night air.
-Showers are a luxury even if you never feel completely clean.
-Clothes dried in the sun are either crusty dry or slightly mildewed.
-Bedtime is often by candlelight.
-Exhaustion hits in the midday heat.
-Every moment feels like the makings of a memory.
-And there's horseback riding.

Saturday, October 11, 2008

She's something else

Scout may be the most independent two year old in Lilongwe.

Yesterday at the pool, she walked across the deck to the bar and must have asked for a soda pop. By the time I caught up to her, the bartender had leaned across his bar and handed her a Fanta. The waitress then popped off the top, and Scout was off again.

Just slightly more dangerous: We have a fifty foot metal tower in our yard that allows us to connect to the world wide web. It's big and green and dangerous. Today, I found Scout about 10 feet up it without a care in the world.

Wednesday, October 8, 2008

Last Patient of the Day

About 30 minutes before we closed, I grabbed what I hoped would be the last patient for the day. I groaned when I realized it was a family of three, and they were all new to the clinic.

At best a visit like this takes an entire hour. But if any of the children are sick, it takes much longer. Reality check: everyone who is new to the clinic is sick; otherwise they would be at home or at school or playing soccer.

The family consisted of four children and a mother; I was only seeing three. The three-year-old won the lottery today. He was the only one of his brothers and sisters who tested negative for HIV.

It's easy to assume that this family would collapse with the news. But I've now seen their stoic response many times. Parents accept the diagnosis of HIV like any other--an ear infection, pneumonia, appendicitis. This mother can't collapse because she still needs to figure out how to feed her children tonight.

And what about the staff? They can't collapse either despite doling out tragedy on repeat. So of course, they'll rush me to finish. Tomorrow we'll do the same thing again and again. The bus leaves at 4:30.

I've found myself moving on as well. My baseline is slowly shifting to a new reality.

familyhood: Part I

Scout: "When Daddy's not around, I like to know where he is."

Sunday, October 5, 2008

Welcome to Malawi

Hello, I'm your tour guide, Scout. Welcome to Malawi.

My family moved here in August. We brought my baby brother Finn. My mama calls him a stick of butter.

I hope this blog lets our family and friends back home know that I'm having lots of fun in my new house . . . when I'm not in my new time out chair.

Breastmilk to peanut butter

My last patient of the day was weaned from breastmilk to Sobo at six months. Sobo is Malawi's Sunny Delight on steroids. So packed with sugar and artifical flavoring, it's only palatable diluted 1 to 5. Except in cases of severe hypoglycemia, Sobo is absent any nutritional value. But the children love it, just look at their teeth.

When Blessings tested negative for the virus one month ago, his mother faced the devil's bargain: Wean too early and children die of malnutrition and diarrhea. Wean too late and the baby is more likely to become infected with the virus.

His twin sister lost that bet just last week when she died from diarrhea.

His full 7 pounds was hyperalert for any food with eyes wide and darting. And then we gave him some.

Malawi provides vitamin fortified peanut butter to the most malnourished. Everyone wants chiponde because it tastes just like Reese Peanut Butter Cups. Though the aftertaste has the grit of a Jamba Juice with the vitamins. Blessings ate his chiponde like a rock star.

He'll go home today with 4 jars of peanut butter and hopefully make it back next week.

Saturday, October 4, 2008

Two reasons to celebrate:

1: the postal system works here! My editor tested it out by mailing me my author copy of

2: The Mother in Me, a beautiful book of essays about the gritty, lovely, rich and affirming role of everyday motherhood.

We celebrated by feasting on Indian food, and later on I sat quietly weeping as I feasted on the poetry. I just love these women.

Home is where the Hilux is

Truly, Lilongwe took a step closer to becoming our home when we finally found a car to buy. Bravo to Andy who also learned to drive stick, driving on the left, in Africa traffic!

We live in a large compound surrounded by brick walls and razor wire. The yard is green (because we water like crazy) and filled with fruit trees--mango, papaya, avocado, lemon, orange.

Scout has turned some developmental corner and is now a kid who likes to play with other kids. She spends every moment he's willing with Precious, who lives on our compound too.

We sleep under bed nets so we don't get malaria while we sleep.

Michael, one of our guards, told me tonight that one of the best things about going to church is speaking in tongues. Here he is at our gate.

We live in one of the nicest neighbourhoods in Lilongwe, just down the street from the vice president's compound. When the rains start in a few weeks, there will be leaves on these trees.

Our dining room

and the compound within our compound, where Precious lives with his parents, Mohammad and Matilda (known as Potato for pronounciation reasons in our houshold). Mohammad is our housekeeper, and Potato watches Scout a couple hours a week.

Because they cook on an open fire (and for lots of other reasons I'll tell you about at length in future posts) we've made the rule that Scout can't just go and hang out at Precious' house. But if we can't find her, that's where we first look.

Leaving, Going, Landing, Adjusting

It's true that the pace of life is slower here (un-automated everything will do that to you). But time doesn’t seem to pass any slower in Malawi, much to our surprise. Hard to believe it's been close to two months since we moved to Lilongwe, Malawi, and almost three since we left Idaho (our home there has ripened in our memory to near-perfect). So to catch you up, here’s where we’ve been and where we’ve landed as we moved through western America's summer to south east Africa's winter.

We left here,

passed through here,

and here,

reunited with Andy here,

then did a lot of this (and this),

and finally landed here.