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