Celebration in Red: Celebrate Brenda

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We will celebrate Brenda.

You have to follow a series of bumpy, dusty trails to find Brenda’s home. Brenda, her two young daughters, and her teenaged, orphaned niece live together in a one-room home with mud walls and a corrugated tin roof. The furnishings in Brenda’s home are very simple — a twin-sized mattress on the mud floor, a wooden stool, and a small, square table. Brenda’s husband died several months ago, not long after the birth of their now-7-month-old baby, leaving this small home full of females.

Although this mother and her young family have very, very little by any standard of measurement, Brenda will dazzle you with her strength.

A mother and child in Mwea Village, Kenya.

For Celebration in Red, Brenda would be happy to tell you the story of what she calls her “secret strength”. For the first 3 years after she knew that she, her 5-year-old daughter and her husband were all infected with HIV, she kept this diagnosis a secret. She was afraid that, if she told anyone at all, she would be isolated and people would see her “as one who deserved to die.”

But Brenda somehow found the strength to share this big secret. First, she told her close friend, Grace. And Grace responded with grace. Then, Brenda told a few other close neighbors, and finally her husband’s family when he was so sick and dying.

She was shocked by their response; they were supportive and positive. They encouraged her to continue with the medicines for HIV, helping her to take care of herself and her children, They told her to be strong.  What a difference that makes! Brenda’s story is one of strength because the people around her came and stood with her in love.

Despite her widowhood, despite having to walk for 2 hours to get to the HIV clinic every month – a walk she makes with a 5-year-old and a baby, despite having very little to her name, Brenda takes her medicines faithfully, every day. She ensures her 5-year-old girl gets her medicines, and she made absolutely sure that her HIV was not passed to her baby. Brenda and I have happy tears in our eyes together each time our tests show that baby Susan does not have HIV.

Now, Brenda encourages other mothers to “be free.”

“Tell just one other friend about the HIV and come together to support one another,” she says.

Come to Celebration in Red for World AIDS Day and celebrate Brenda. This is your chance to stand with your brothers and sisters worldwide who are fighting this virus.

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Noelle

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She walked all this way to collapse in my exam room.

Noelle is thirteen, but she bears the weight of two adults. At home, it is only this teenaged girl and her mother. Her mother is bedridden, terribly sick with a combination of HIV, TB of the spine, and malnutrition. It is up to Noelle to take care of her.

Noelle needs to take care of herself too. She also has HIV, this virus that destroys the body’s defenses and leaves it weak and vulnerable. She tries to take her cocktail of medicines every day, but that can be very difficult when you are only 13 and you are the one worrying about food and shelter and care for yourself and for your mother.

Noelle has been sick since Saturday, with a high fever, headache, and vomiting. She has not been able to eat much. And today, she finally decided that she was sick enough that she needed to get herself to our clinic. The $1 that it would cost to get a ride on the bus to the clinic was far too much for the budget in this little household. This clinic is a one-hour walk from the girl’s house. Somehow, she managed to walk for that one hour.

I think that this brave and struggling girl used up all the energy she had left on her walk, just barely holding it together to get to the clinic. Here I find her, on the floor of the clinic exam room. The clinical officer calls me urgently and I come running from the midst of my meetings, from another side of the building.

Eventually, I piece together the sad story of what brought her here, to my floor.

It is clear to me that she should be admitted to the hospital, but the clinical officers tell me that I cannot admit a child to the hospital wards without a parent or guardian to stay with her. And yet, how could I possibly send this one back home? Is she sick enough for me to fight the legal battle to keep her here? And what happens to her mother at home?

What to do, what to do… No one to pay. No one to be the responsible adult. Only this sick girl with too much weight already weighing her down. No good options. I start estimating how much it would cost me to convince a member of my study staff to stay here in the hospital with this patient overnight.

So often, my challenges here are not just challenges with the medicines or with the infections or even with the decisions about how to best treat a child with a complicated disease using very limited resources (although those are definite challenges!)

Instead, these are the issues that twist me up and sometimes break my heart: What to do when there are no adults to care for a child? What to do when your community has fragmented? What to do when a family crumbles under stigma and discrimination? What to do when poverty’s vicious cocktail of malnutrition and violence and stolen opportunity renders my drug cocktail ineffective?

Seldom do I have answers. But here we are, Noelle and me. Somehow, here we are. We are here in each other’s lives, and we need to be love to each other. This is what I struggle to do here — to be love for the children here with my brain and my hands and my resources and whatever else I can conjure. Today, love looks like a way for sick girl to stay in the hospital overnight.

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A Little Ranting About Injustice

Because I have to rant every so often to stay sane…

In 2004, when he was the Chancellor of the Exchequer in the UK, Gordon Brown gave a speech describing how the world was failing poor families – and poor babies in particular. One doesn’t often hear the person in charge of a powerful nation’s economy talk about such things. I am not sure who else carries these words inside of their head, but I think of them when I think about the terrible fact that thirty thousand infants still die every day in the poorest parts of the world.

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Gordon Brown* made the case that these thousands of babies die because of our moral apathy and lack of political will:

“And let us be clear: it is not that the knowledge to avoid these infant deaths does not exist; it is not that the drugs to avoid infant deaths do not exist; it is not that the expertise does not exist; it is not that the means to achieve our goals do not exist.  It is that the political will does not exist.  In the nineteenth century you could say that it was inadequate science, technology, and knowledge that prevented us saving lives.  Now, with the science, technology, and knowledge available, we must face the truth that the real barrier is indifference.”

We know what to do. The barrier is indifference.

This sentiment has shaped much of my journey in medicine and why I do the kind of work I do. We know how to prevent and treat most of the things that kill the children of the world. But we have not put the systems in place to ensure that children everywhere get what they need to have a chance at life.

This injustice is the inescapable lesson of a Kenyan hospital ward, as I stand over a peeling metal bed and watch a baby die. This is the lesson of a shanty clinic where a small team struggles to get people HIV medicines in a slum overflowing with garbage and one million people crammed together. This is the lesson revealed by every mother that brings in a baby — too sick, too late — that could have been saved by clean water or by a $10 antibiotic.

You can’t avoid thinking about suffering in Kenya, and you certainly can’t avoid thinking about HIV. Nor can you avoid the realization that things do not need to be this way. Lack of political will. Indifference. How can we let babies die because they live in a poor place?

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What do you tell the mother who knows that there is medication somewhere else in the world that can save her child — but she can’t get to that medicine because she is poor and lives in a poor country? What do you tell the father who is watching his son waste away because he lives in a place where the simple surgery that would fix his son’s heart is not available?

Literally, what should I tell them? That you are praying for them? That you know the next world will be a better? That they have never crossed your mind because you live in a place where very few babies die?

I have to ask because these children are my children. They are right here in front of me. I am diagnosing them with HIV. I am giving them medicines and food. I am watching them cry. I am carrying them in my arms, with their legs and arms wrapped around me. I am driving as fast as I can to the pharmacy in town to get the medicine that the referral hospital is somehow out of. I am wrapping little bodies in blankets when they die from diseases we could have treated, sicknesses we could have prevented. I am seeing their parents’ eyes grow dull with sad acceptance that, in this place, there is nothing more we can do.

I don’t know what to tell them. All I can do is show them that I am here and that we are fighting for them.

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Because I can’t forget, because these are my children, I keep coming back to work in a place where I have to squat in dirty latrines, where I can’t get a latte, where I empty my pockets daily to buy antibiotics and food for families, where forgotten children lie sleeping in the gutters along the street. I am meant to be here, in this fragile beauty and this great brokenness. I am meant to be fighting here.

Even if you have not had the opportunity to do these things with your own hands, even if you don’t have to see the suffering, you can see it. That’s what I am really asking for today. I don’t really need words. I want more eyes to see this.

You can open your eyes. You can see and read and hear. It is there for you to witness, all around the world and also right next door. And we each get to make our own decisions about how we will live in the face of this injustice.

(*A random and humorous side note about Gordon Brown, which also gives me a degree of fondness for the man: I actually met Gordon Brown a few years ago when he was still the prime minister of Britain. After one of our medical myths books was published in the UK, I got to go to London for a bunch of book promotional stuff. Anyway, I ended up on this popular British morning TV show, and the other guest of the day was the prime minister, Gordon Brown. As they were changing the microphone from him to me, I was struggling for something to say to him. So, I told him how I have appreciated his comments on global poverty and how I sometimes use this quote of his when I teach students and talk about my work with HIV in Kenya.  His response was that this was evidence that I was “as intelligent as I was beautiful.”  He is a politician, I know, but it’s not every day that the sitting prime minister tells you that you are intelligent and beautiful! Certainly my best compliment from a world leader.)

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Too Many Times

“I have heard this story too many times,” I think, as I listen to the grandmother in front of me. The stories all start with years of sickness and suffering.

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Rotich is 3 years old. His father died just months after he was born. His mother spent most of his first two years of life in and out of the hospital herself. She was sick over and over. No one knew exactly what was wrong with her, but when she died a year ago, the doctors told her own mother that it was HIV.

Rotich went to live with his grandmother after his mother had died. His grandmother barely scrapes together enough for the two of them to eat one meal a day, but she loves this little boy and so she keeps trying. She asks her neighbors for help, and she does her best to provide for him.

A few months ago, Rotich got sick with a bad, bad cough. He kept coughing and coughing. Not only was he struggling to breathe, but he was too weak to eat even that one meal a day. Finally, his grandmother got him to the hospital. At the hospital, they learned that Rotich has this HIV virus in his blood too.

Those were the bad times. Rotich’s grandmother thought she would lose this little boy as well.

“He was all that remained of my daughter,” she said. “And I did not want to lose him. But I knew he would die. Those who have HIV, they just die.”

Thankfully, Rotich’s grandmother was wrong. She kept trying, despite her fears. She managed to get him enrolled in an AMPATH clinic in a town within an hour’s trip of where they live. At the AMPATH clinic, Rotich was started on a combination of medicines that could fight back against this virus in his blood. I was out to prove Rotich’s grandmother wrong, too. I didn’t want to hear the sad ending to this story again. With these medicines, Rotich’s story transforms from death to life.

My study team started evaluating Rotich and his grandmother every month, going to their house and seeing them in clinic. During these evaluations, they make sure that he gets all four of his medicines, twice a day, every day. They helped arrange for him and his grandmother to get a small monthly supplement of food to help them get a second meal each day.

And now, we all get to bear witness to a miracle: this last remaining member of his family is thriving. He makes us laugh with how he clowns around in clinic.

This is the real story that I get to hear many times, for many children. From death to life. And even though it is a story we hear over and over, it is not really too many times. You can’t grow tired of the miracle.

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All Who Wander

Oh Venice. In the blur of too many projects and deadlines and barely making it on the plane, I suddenly opened my eyes in this labyrinth of stone and pink and glimmering light, all floating/sinking in the Adriatic Sea. I had not expected to be so captivated by this floating, slowly sinking city. I am a bit delayed in my posting, but I cannot resist sharing more of Venice…

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Venice was sitting down at a café and looking up from your coffee to realize that, across from you, sits the most enchanting girl in a pink dress. Then, she smiles directly into your eyes and you fall into a conversation that you do not want to end. As you talk, you realize that this girl is, in fact, nearly 100 years old, but the beauty of her spirit radiates so strongly that you didn’t notice her wrinkles and age and saw only this shimmering pink core of her. Venice is an ever-changing magic of light and beauty and decay and art.

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Wandering through the maze of Venice’s narrow corridors, with a constant crossing of canals, I could not keep my usually strong sense of direction. Instead, I happily turned myself over to this labyrinth. They say that the reason to wind through a labyrinth is to walk yourself into alignment. You take each twisting step in order to be present right where you are. All who wander are not lost. This was Venice for me.

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“The quality of Venice that accomplishes what religion so often cannot is that Venice has made peace with the waters. It is not merely pleasant that the sea flows through, grasping the city like tendrils of vine, and, depending upon the light, making alleys and avenues of emerald and sapphire, it is a brave acceptance of dissolution and an unflinching settlement with death. Though in Venice you may sit in courtyards of stone, and your heels may click up marble stairs, you cannot move without riding upon or crossing the waters that someday will carry you in dissolution to the sea.”
Mark Helprin, The Pacific and Other Stories

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