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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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…

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Still shot from one of the films… follow along with film creation at untitledevent.wordpress.com

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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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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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