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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When it is Too Much

I ran yesterday, for the first time since I had surgery on my leg four weeks ago. My usual slow-but-steady 5 kilometers. I did it again this morning. It has been years now since I have gone for so many weeks without running. (How did I become one of these strange people who runs so frequently? Bizarre.) It felt great (except for a bit of leg pain)! I finished my run feeling deeply grateful.

I had forgotten how much I need to run – how those minutes of turning off my brain and making my body work are precious and healing. I did not realize how much I had missed it. It made me think of the other things that I know are healing and important for me and for which I should carve out time more regularly. Talking to the people I love, playing the piano, and writing top the list.

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Still my favorite running picture ever: running in the Kass Marathon just like I run here everyday — me working hard and surrounded by barefooted children easily keeping pace.

In the past 3 weeks at home in the US, I have been able to spend some time talking with the people I love (although never enough!), but the others have been neglected. I especially have a hard time writing for myself, for this blog, for my heart when I am writing writing WRITING for work. (‘Tis the season of one grant application after another.) So, I choose to carve out a few of my precious minutes to write today.

I feel like I could write about a hundred sadnesses and frustrations from this past week while I have been in Kenya. The shooting in Charleston has my heart breaking over the systemic brokenness and injustice of racism and gun violence in my home country. The poverty and pain in which children here live everyday overwhelms me. The endless problems of this global health research program for which I am now responsible seem beyond my ability to solve.

It feels like TOO MUCH.

And yet, as Anne Lamott says, life is such a mixed grille – “hard, magical, brutal, gorgeous, unfair, hilarious, sweet, wild and mysterious, all at once.” I cannot deny the magic, the gorgeousness, the sweetness.

I am grateful for my multinational team every single day. They are so smart and capable and hard-working. They love our children here every day through their work. I don’t know what I would do without them. I trust them to carry out my ideas and a hundred other things besides.

I am grateful for my friends from near and far who cheer me on. You send me messages and pictures and words of encouragement when I need them most. You may not realize it, but sometimes, my ability to lean back into the enormity of the challenges here sometimes depends critically on those moments of connection and encouragement. For all the flaws of social media, your “likes” and comments sometimes help me to know that I am not alone and to press on.

I am grateful for the beauty of this country. Even if I am mostly confined to the hospital and the poorest parts, it is rich in the beauty of its skies and savannah and animals and people. The flat, majestic presence of the acacia trees light up my heart.

I am grateful for the opportunity to work to bring about health for the children and families of this country and countries like Kenya. Your children are so beautiful. It is my deep privilege to fight against the daily deaths of 17,000 children under the age of five. Even when it seems impossible, I would rather be in the fight any day.

 

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Yesterday, Monicah, age 10, looked me in the eye and told me that her dream for the future is to become a teacher. “I wanted to one who can change the future for children,” she said. Her eyes sparkled and shone with the power of her dreams. Let it be so.

So, here I am. Fighting, working, running, writing, practicing gratitude. Let it be so.

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The Limits

My medical student called me over to look at a little girl named Jacqueline, just like my mother. She was resting in her grandmother’s arms on the bench outside of my clinic room, one of the many children waiting to see the doctor at the HIV clinic.

This Jacqueline looked like a tiny baby in her grandmother’s arms, but when I unwrapped the layers of blankets and clothes around her, I could see that she was much older. Although her frame was no bigger than an infant’s, this sick little girl is three years old. She is so horribly malnourished that she only weighs 11 pounds.

This Jacqueline’s body has almost stopped growing because she receives so little nutrition and care. (I think to myself, “I can’t tell my mother, who feeds and cares for everyone, this sad story.” How she would cry over a toddler with not enough to eat.)

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This Jacqueline’s parents both died from HIV, the virus that is also stealing away Jacqueline’s life. Her grandmother cares for her now, but this elderly woman is overwhelmed by trying to care for her 4 grandchildren on less than $1 per day. Her grandmother is trapped in the kind of desperation created by grinding poverty, one sorrow after another, and the helpless injustice of watching your children slowly die.

Her grandmother looks right into my eyes and asks me, “Is there a place that takes orphans?”

Then, she reaches out and grasps my wrist and asks if I would take this little girl. And then she pleads.

“Please,” she says. “Please take her.” She looks right at me.

What does it take to offer up your child to a stranger?

Of course, I cannot take this child, as much as my heart breaks over her. Honestly, I would take her if I could, with my longing-mother’s heart, but her country wouldn’t let me. Instead, I admit her to the wards of the hospital, with promises to the ward that I would pay the bill since this family obviously has nothing. I try to make arrangements for my friend Juli’s wonderful hospice to take her and continue to feed her and restore her when she is stable enough to be discharged from the hospital.

And I bump up, yet again, against my limits. My work is deeply meaningful, but I know that I cannot complete this, I cannot solve this, I cannot save each of these children.

I am privileged to work to fight this giant challenge of millions of children in the world’s poorest places struggling against a virus that will take their lives without access to the right medicines and nutrition. And I am privileged that my particular set of talents and skills can find a place in this work. But I know that this challenge will take so much more than I have, more than I am.

Here is this baby, can’t you save her? Can’t you take her?

Here is this teenager you followed every month for two years – how could she die?

Here are these thousands in your clinics, Rachel. Here are these millions in your world.

Here is this work – this giant problem that I love trying to solve – and yet I know that my piece is such a small one. So, how do I do this? How can I let me heart break yet again? How do I find the courage, hope, and energy to still walk into this? I am pushed up against the limits of being human.

And yet, there is only the one thing to say:

Here I am.

I will give myself.

I will do it as me.

And the God I believe in says back:

Here am I.

Here I am.

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