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.
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.