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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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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Even Janet

When Janet starts talking, you know immediately why everyone loves her. She has this warm laugh that relaxes your heart. She is the kind of person about whom you wish that she lived next door so that she could daily infect you with her joy.

Janet works as an outreach counselor within one of our rural AMPATH clinics in Kenya. This means that she is responsible for following up with patients who have enrolled in our clinic, and has a particular responsibility to figure out what is happening when someone stops showing up for their appointments.

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At the clinic with Janet yesterday

Janet does much more than that though. When a person is newly diagnosed with HIV and at the clinic for the first time, Janet is the one to anchor them, to talk with them, to help them understand in the midst of the ringing word “HIV” in their ears and the overwhelming burden of this terrible diagnosis that they think will kill them that they can have hope, they can receive care, they can have a future.

Janet also provides counseling for patients about how to keep taking their medicines every single day for the rest of their lives. She is the one who answer the clinic 24-hour cell phone, where patients call when they are having problems.

Without Janet, this clinic would have a gaping hole.

Janet does such an amazing job at her work because of her embracing, joyful personality, but she also has another advantage – Janet is also infected with HIV. She shares this freely with everyone she works with, and Janet’s robust, warm presence gives you hope that the words we say are true. You CAN live a healthy, positive full life with HIV. You CAN have hope for a future.

Even though HIV care is what Janet lives and breaths, even though Janet convinces one hundred patients a day that sticking with the treatment for HIV will offer you a bright future, Janet herself has not yet overcome one of the major struggles that my team struggles with. Janet has not told her own daughter, a 13-year-old girl named Sarah, that she too is infected with HIV. Even Janet cannot do this.

Sarah takes medicines for HIV every day, just as her mother does. Sarah has taken medicines since she was diagnosed as a small baby. And Janet absolutely believes in these medicines. But the thought of telling her daughter that she has this disease that everyone fears and hates and speaks against – a disease that came from her own body? Janet cannot bring herself to do it.

She worries what her daughter will think and how it will affect her heart. She worries what will happen if anyone else finds out that her daughter has HIV. Will they hurt her? Will they isolate her? Will they make her feel LESS THAN? Janet, who talks about HIV every hour of the day, cannot bring herself to talk to her daughter about this.

My word, I think. If even Janet cannot bring herself to do this, which of our parents will do this? But the counselor needs a counselor for herself. Sometimes, to take the step we know is right can be so, so difficult. I know this myself. Sometimes, it takes us years. And the incredible burden of the stigma surrounding families here is made clear what again. The fear that makes us hide our burdens, hide our truths, hide our selves.

It is so clear to me that my team needs to press on. With Janet, with our hundreds of families for whom we are aggressively providing counseling and guiding them through the process of telling their children, with plans for bigger work in the future… we press on.

I read something recently that said everyone should figure out what she believes to be the most important work in the world and just go do it…. You HAVE to decide what you believe to be the most important work in the world and then you have to DO THAT WORK. Because THIS is what happens: God shows up.

Agreed. Intense and heart-breaking and tiring work this fighting of this damned virus in the places where it has taken root, but my heart is swelling and I know God is here.

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A Time for Weeping?

I hate to write one weeping post after another, mourning the loss of life over and over. But it seems to be a time for weeping. Students killed in Kenya. A Black man (another! over and over and over) killed in Baltimore by the system that is supposed to be there to serve and protect. And, oh Nepal, weeping over your thousands.

6842006839_2052613bef_oMy own global health journey began in Nepal. During my four years at Cornell, I worked in Public Relations for Educate the Children International, a non-profit that provided educational opportunities for children and their families. That experience taught me that a small, committed group of individuals working in partnership with the local community in one of the world’s poorest places could make a huge difference. I realized that this was what I wanted to do with my life — to bring about health (in the broadest sense) for the underserved.

As life would have it, my family of adopted siblings grew to include a brother and sister from Nepal who my parents have welcomed into our family for years. We love Nepal.

In this time of weeping, Nepal is suffering horribly. Close to 5,000 people estimated to be dead. Many, many more thousands injured or displaced. The parents of my “siblings” are among those who have lost their home.

Nepal reminds us what global health looks like. For many of us, it took a massive, horrific earthquake to remind us about Nepal. The earthquake wakes us up to what was or was not in place before this disaster hit.  The earthquake created something truly awful that we have to pay attention to, but it also makes us look at Nepal.

What do we see in Nepal? For a long time, most Nepalis have not had the most basic of human rights: clean water, decent shelter, and adequate nutrition. Without these basic necessities, Nepalis face chronic disasters of disease, the diseases of poverty and malnutrition – pneumonia, diarrhea, poor survival at birth. And in the face of this terrible shaking of the earth, the already limited infrastructure falls apart.

We cannot prevent earthquakes, but we can prevent the inequalities and injustice that put so many at risk when something goes wrong. This beautiful country, these beautiful people. So much loss.

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photo @pahartrust

Please think of Nepal. (And our Black American brothers and Sisters. And Kenya. Open your eyes, even if it makes you weep.) And if you are inclined to give, Educate the Children has started a relief fund.

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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

 

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