Adventures with my Heroes

I always tell the older kids that I take care of here in Kenya that they are my heroes. And they are!

I shouldn't call them kids. They are young adults -- and they are strong and intelligent and shining. They share their stories about growing up in the face of the worst kinds of loss, living through the deaths of parents, the struggles of chronic disease, and a constant burden of stigma all around them. But despite the weight that they carry, they are triumphant.

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First of all, they are alive. Moreover, they are living with grace and hope. They support the younger kids who are learning for the first time what it means to have HIV and to meet the challenge of taking these medicines every single day. They are open about their status in the face of a society that would tell them that having this virus in their blood should make them ashamed and resigned to death. They work hard in school and jobs and in managing their infection.

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Best of all, they dream.

I have been able to share some really fun activities with my heroes over the past weeks in Kenya. Here are just a few highlights:

1. Story-telling with visitors. The actor Jesse Spencer (of House and Chicago Fire) and his girlfriend visited our program in Kenya, and several of my youth shared their stories with our visitors. My kids were excited for the opportunity to tell them what it means to learn that you have HIV and how that impacts your life when you are growing up in Kenya. They also were excited to tell him about The Pocket Square Project and how it provides the support services they find critical to adjusting to life with HIV. Happily, Jesse was a great listener and fabulous with our kids.

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2. Laughing, Laughing, Laughing. These youth crack me up. They have serious stories, and so they take their delight in life very seriously too. I am not sure I ever come away from a meeting with any of them without a number of silly pictures.

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3. Peer Support Groups. With funding from The Pocket Square Project, we were able to hold and plan several support group sessions for HIV-infected adolescents cared for in the AMPATH clinics across western Kenya. These groups provide the kids with a place where they can be open and honest, where they can be "normal" and learn how their peers are walking through the challenges of living with this virus. I cannot begin to tell you what it means for these youth to have these opportunities to come together.  As a fun bonus, we had a big donation of Under Armour gear and outfitted some kiddos thanks to #UAGiveBack.

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4. Planning for the future. Not only are my older youth these shining examples of what can happen when children have access to HIV treatment, they are constantly thinking about how to improve what we are doing throughout the AMPATH program for other youth growing up with HIV. The youth prepared a strategic plan for how to support and reach the adolescents engaged with our program. Truly, they are world-changers.

My dear foster daughter is on her pediatric ward rotation in nursing school!
My dear foster daughter is on her pediatric ward rotation in nursing school!

5. Publicity for The Pocket Square Project. We were all excited to see The Pocket Square Project featured in the Indy Star and then picked up for the Chicago Tribune. That's right -- fashion can change the lives of children living with HIV!

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5. Creating films. In yet more fun and excitement, our adolescents and other students from Moi University are collaborating with Thomas Lewis (my amazing film-making friend and fellow faculty member at IUPUI) to make short films about the stories of adolescents facing HIV-related stigma. We have been script-writing and casting and preparing for months -- and now the actors and crew are hard at work making our movies! The footage looks beautiful, and I cannot wait to see the final results. We plan to use them in our clinics, support groups, and a variety of community settings. More to come on this front...

Posted at 08:46

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.

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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.

Posted at 02:01

Stories

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.

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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.

Mercy found friends to walk with at a support group from The Pocket Square Project
Mercy found friends to walk with at a support group from The Pocket Square Project

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.

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Posted at 23:03

What you can do to support the students of Garissa

#147NotJustaNumber

 

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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.

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With some of my Moi University students in January

 

 

Posted at 20:47

April Amazingness

I love it when new possibilities open up to improve the health and well-being of our children living with HIV!

Here are 3 new and exciting things that just developed in my world to begin April (not fooling!):

1. More film-making! My team is partnering with our talented friend, Thomas Lewis, to make more films in Kenya to benefit our youth and families living with HIV. Our goal with this new project is to produce a series of short, dramatic films that target the issue of living in a place where those with HIV are stigmatized and discriminated against. Through the efforts of our multidisciplinary team, we now have 2 grants to make this film project possible. We have been working on scripts based on the stories of our youth and families, and we plan to start filming in June. I can't wait to have these films as a tool to use with our kids, families, schools, and elsewhere in the community. Hooray!

Thomas and I after a day of film-making on our first project in 2013
Thomas and I after a day of film-making on our first project in 2013

2. Under Armour amazingness! I got a rather urgent call from my administrative assistant today about 2 pallets of boxes arriving at my office. (For those of you who have never been to my office, it already resembles a storage unit as it is inevitably packed with supplies to bring to Kenya.) Through the great work of The Pocket Square Project, Under Armour sent us a ton of brand-new sneakers for our kids in Kenya! They are amazing, and I know that our adolescents are going to love them. Somewhere in the piles of boxes, there is also some other athletic gear too. I can't wait to share these things for our healthy living - youth activity days this summer. Now, we just need to carry them over to Kenya...

Oh my word! Look at all this stuff! The kids are going to be thrilled.
Oh my word! Look at all this stuff! The kids are going to be thrilled.

3. Working on improving children's adherence to HIV medicines around the globe! The last few months have been a whirlwind of travel with launching the new projects on children's adherence in South Africa and Thailand, and then participating in global meetings on adolescents with HIV in Italy. I also am writing a new grant proposal to expand this work. Plus, there's something much bigger in the works that I cannot announce yet, but am very excited about.  AMFAR and TreatASIA featured our Thailand launch on their website and in their newsletter.

With our team at the Thai Red Cross HIV Research Centre
With our team at the Thai Red Cross HIV Research Centre
Posted at 15:18

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