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 person who runs so frequently? Bizarre.) It felt so good (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.

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.

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.

Posted at 02:01


Anyone who knows me well will tell you that I am a storyteller. My usual response to any disaster or adventure that comes my way is to turn it into the best story I can, ideally one that will make you laugh. My secret dream is to tell a story on The Moth. (I think it would be the story of how I almost died on Mount Kenya from high altitude cerebral edema.)

One of the great privileges of my work taking care of children with HIV in the world's poorest places is that I get to share their stories. I consider it both a privilege and a sacred responsibility to share the stories of the children and families with whom I get to interact every day in places like Kenya. I want you to know them. I want you to hear the stories of these women and children who sit in my cramped exam room, whose hands I hold, in whose eyes I see hope and despair and determination.

girl with a secret

I want to tell you Mercy's story. Mercy sits quietly in the chair next to my desk at our main HIV clinic in Kenya. She is 12 years-old, but much shorter and thinner than a 12-year-old should be. Her hair is cut very short in a fuzz of soft curls over her head, but she has curling eyelashes and dimples so deep that they distract you from the rash speckling her face and neck and arms.

Mercy's mother has not yet told her daughter that she is infected with HIV, but Mercy tells me that the other kids at school tease her about being sick and ask if she is "going to die tomorrow."  When you are short and skinny and have rashes all over your skin, the other kids in Kenya assume that you have HIV (and they are usually right).  And so they call you names and tease you and make you think you are going to die.

This teasing makes Mercy feel like she wants to die. It makes her curl up inside of herself and think that there must be something terribly wrong with her and with her family. She doesn't want to take her medicines any more. She doesn't want to be different. She is not smiling her beautiful smile when she tells me about school. Mercy thinks that this is her story: that she is sick and shamed and that there is no tomorrow for her.

Even better than the story-telling part of my job is the fact that I get to be a story-changer.

I have the unbelievable privilege of trying to make the story different for the millions of children growing up with HIV in their bodies. I get to work every day to make their stories have a different ending - an ending that does not finish with sickness and despair, with stigma and death. With medicines and changes to the healthcare system and putting in place supports like counselors and creating ways to engage the community, we are working all the time to change the story for families with HIV. I love this.

My main set of research projects in Kenya are called HADITHI, which means "story" in Swahili. We want children growing up with HIV to know that HIV is just one part of the beautiful story of who they are and who they will become.

We see children's stories change.

I changed Mercy's story when I helped her mother tell the 12-year-old that she has HIV. In some ways, this was a devastating milestone in her story - the day when she heard those terrible words confirmed, that she has this deadly virus in her blood. But we also changed Mercy's story by telling her what it REALLY means to have this virus. This is a virus that she can live with. And we changed Mercy's story by giving her access to the medicines that will keep this virus sleeping and allow her immune system to remain strong.

If she takes her medicines every day, if she eats and exercises and sleeps and does all the usual things to keep her body strong, Mercy can look forward to a long life full of all the bright and sparkling things she wants to do. She can go to high school, she can go to college, she can get married, she can have a child who is not infected with this virus. Mercy can fulfill her dream of becoming a nurse. Mercy can smile again and show her beautiful dimples and know that, deep-down, she is clean, she is whole, she is enough.

Mercy still has to fight through the name-calling, the million ways that you can be made to feel ashamed and isolated because of this virus in your blood. But we are doing our best to support her through that. Through the funds we are raising with The Pocket Square Project, we are putting in place counseling services and a support group for youth just like Mercy. A place where she can belong and be open and know that she is not alone. Through The Pocket Square Project, we are changing Mercy's story.

If you want to change the stories of children living with HIV, I would invite you to come to a party! Come to #Fashion4Philanthropy! Come celebrate The Pocket Square Project with us and our launch of our new special edition line of handmade, kitenge bow ties made by Louis Lien. We are getting together on Friday evening in Indianapolis. I would love to tell you stories there, but even more, I want you to be part of how we are changing the stories for children growing up with this virus.

Join our story. Change our children's stories. I can't wait to share them with you.


Posted at 23:03

What you can do to support the students of Garissa




Many of you have asked me how you can show your love and support for the students of Garissa, Kenya. I have an answer.

All of the approximately 650 surviving students from the Garissa University campus are being moved to the Moi University main campus, just outside of Eldoret, Kenya where I work. Apparently, many of the traumatized students expressed the desire to stay together (at least in the short term) rather than being dispersed to campuses across the country.  The faculty and staff from Garissa will also be moving to Eldoret and will be working out of a building on our medical school campus in Eldoret.  So, we are taking them in.

Many of these students, who were already among the poorest in Kenya, were forced to abandon everything they owned when they fled Garissa. They woke up to this crazy shooting in their dormitories and they fled with only their lives. For my friends in Kenya, the University is looking for donations of clothes, basic necessities, and funds to support these students and staff in their difficult transition.  The IU House is happy to coordinate donations in person. The staff in the psychiatry department will be trying to address the mental health needs of the students and staff who are suffering from their recent trauma. I am so glad that they are in this place.We want to show them welcome and love and support.

If you want to provide a donation to support these students - many of whom are impoverished, traumatized, and now facing a major transition in their lives - we have now set up an account for donations through the IU Center for Global Health office in Indiana. These donations will go directly to the support the students needs, managed through our team at the university on the ground.

The easiest way to make a donation is to go to www.ampathkenya.org, click on the "donate" page at the top, this will take you to a donation page where there are two options.

  • The first option is Indiana Institute for Global Health, Inc (IIGH, Inc). If one clicks on the IIGH, Inc link, it will bring one to a donation page. That donation page has a comments section at the bottom, and one must write "Garissa students" there in order to ensure the donation gets directed appropriately.
  • The second option is the IU Foundation. If one clicks on the IUF link on our web page, it will bring you to the IUF page with IU-Kenya operating fund as the only option in the drop down menu. One would then have to put "Garissa students" in the section labeled "in honor of", and that way we will know the donation is specifically for them.

This may seem like a far-away tragedy, but these are students just like mine -- and just like yours. They are eager to learn, smart, talented, and ready to grow into Kenya's future. For students who evacuated with very, very little in the midst of trauma they had never imagined, even a small gift will mean a lot. We will make sure it gets there directly.

Show the youth of Kenya that 147 is not just a number.

With some of my Moi University students in January



Posted at 20:47

Bangkok: Launching our project with the Thai Red Cross HIV Center



My latest research adventures brought me to Bangkok, where we launched and trained another site for our project to figure out the best way to monitor children's adherence to HIV therapy across sites around the world. I really love seeing this work expand across the global sites providing HIV care.

The Thai Red Cross has been caring for patients with HIV in Bangkok since 1985. They are true pioneers in what it means to provide HIV care for patients in poor places. In the Thai Red Cross HIV Research Center, they provide care for a large number of children, adolescents and adults who are also enrolled in key AIDS research studies. Most of their children are on the older end because they have been providing HIV care for so many more years. This makes them a great site with which to work to figure out the challenges of transitioning children with HIV into adolescence and adulthood.


Not only was this site well-equipped to launch our new research project, but they enthusiastically welcomed me to do teaching for two of the medical schools in Bangkok about pediatric adherence to HIV therapy. Moreover, the Thai Red Cross team hosted us with great enthusiasm, making sure my program manager and I saw the highlights of the city and ate, ate, ate our way across Bangkok. Such fun.


The Thai Red Cross team with me at the Grand Palace

Posted at 08:56

Research Fun in Johannesburg!

For me, the whole reason to do health research is to figure out how to make healthcare work better. I wanted to know what would work. I ended up in global health research (As an English major! Who hates statistics and math!) because the issue of how to save the lives of children in the poorest parts of the world was critically important to me. I wanted to tackle big, giant problems killing children and I wanted to know what solutions would really make a difference.

I wanted to figure out how to best care for children with a really complicated disease who are growing up the poorest parts of the world. If you can create a healthcare system that can do that, you can do anything. That's why I do research.

small boy_waiting mothers

This week has been a really exciting step in seeing those dreams come into fruition. For years, I have been struggling with the challenge of how to know which families in Kenya are having the most problems with maintaining HIV therapy for their children. We know it's a major challenge to have a child taking 3-4 different medicines two days a week for the rest of their life, and we need to know how we can help families with that challenge. We have studied this like crazy in Kenya. Now, we are starting to look at the rest of the world's HIV programs.

I chair the global consortium of programs providing HIV care for children (called IeDEA), and we want to figure out a consistent way to measure children's adherence to HIV medicines for HIV care programs around the world. This week's exciting step for that has been to test out the procedures we have been developing in Kenya, and to see how they do when you use them at other sites in East Africa, South Africa, and Asia.

rahima moosa_johannesburg

Launching this new project at the Rahima Moosa Children's Hospital in Johannesburg, South Africa has been ridiculously fun. All week, my program manager and I have been doing training sessions here in Johannesburg and learning about this clinical system -- all to get ready to launch an HIV medication monitoring project here.

They have a lot more resources than our clinics in Kenya, but they also serve a very poor population of children and their caregivers. Spending time in the largest child HIV clinic here in Johannesburg feels like home; bring me to the children and families struggling with HIV in the poorest parts of the world, and I am among my people. (And I can speak to these families in English! Such a delight for explaining things!) The South African clinicians and I have bonded over our shared challenges.

Johannesburg has more resources than Kenya (And roads! And wine! And shopping!), but they also still have a major HIV problem here. Among the pregnant women coming to the largest mother-baby hospital to have their babies, 1 in 3 has HIV. ONE in THREE pregnant mothers. HIV is still everywhere. Passing this terrible virus into the bodies of beautiful babies and children.


I love new ideas, and of course, new ideas are born daily when I am among my kindred hearts. We keep dreaming up more and more ways to collaborate across Eastern and Southern Africa to help our families. We struggle with so many of the same challenges. And we want to answer questions about what will work and about how to provide better care for families with children with HIV.

Long days, but fun, fun, fun.

Posted at 05:14


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