Wordless Wednesday: Headed to my Cousin

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Hope (again)

It turns out there are not the right words to describe heartbreak. Broken-hearted. Crushed. A hole in the heart. Shattered.

When it happens to you, you struggle for the words to describe, even just to yourself, this empty, hollow, wretched state. There are not words for how you mourn as you breathe in and out. There is no description for the way your mind twists around the losses now and the losses for the future.

Even as the sadness weighs on you, you squeeze what hope is left into putting one foot in front of the other, in getting through this day, and then the next.

Vivian’s heartbreak came with a small, pink slip of paper on which the words “PCR reactive” were written. She thought she could feel her pulpy, pumping heart slow and harden and stop beating as the words came out of the counselor’s mouth, telling her that she was infected with HIV and so were her two daughters. She thought of them, beautiful and bright, in between the slowed beats of her heart. Monica in a red dress chasing little Deborah outside of the house that morning, a 5-year-old mother trying to lift her baby sister in skinny arms.

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Vivian felt her hopes for herself and for her girls spilling out of her heart and onto the floor. She had hoped to live to see her grandbabies. She had hoped that her daughters might make it all the way through high school, and even through university. She had hoped that her small business along the roadside selling milk and eggs and fresh vegetables might do well enough that she could have a shop of her own and finance all of these dreams. Big to small, drip drip drip spilled the hopes.

The man she called her husband left several months ago. She had been hoping that he would return soon, that everything would be ok. And now, in between the  slow heartbeats, she started mourning the loss of him as well. This was why he was gone, she knew now. And her hope for him dripped to the floor as well.

Sometimes, our patients come in so sick that they need to be carried, with bodies as frail as the pages of an ancient book that crumble as you try to turn them. Sometimes, our patients come in so drained of hope that their hearts are even more feeble and frail than their bodies.

I have good doctor plans for restoring Vivian and her daughters, Monica and Deborah. Medicines, food, exercise, work, school – all the day-to-day menders of broken bodies and, sometimes, of broken hearts. You can have many years, I tell her. There is reason to hope again.

But how to ease the weight when your love has left you? When your life may, indeed, be cut short? When your dreams for your children seem so much more impossible? When you have struggled your whole life to carve out these dreams despite the grinding poverty of life on $1 a day?

I don’t seem to have much luck scooping hope up off of the floor, so this is my motto for the week. (Thanks, Momastery)

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What can I do in the this beautiful and terrible world? I can try to figure out how to help Vivian and her daughters navigate this world with more hope and less fear. I can try to figure that out for myself and for our families in Kenya who walk with this particularly terrible virus. And I know lots of families are trying to figure this out for their own battles against the parts of their worlds that they are finding terrible and frightening. How to cling to the beauty. How to find the hope.

How do we do it? How do we manifest hope, a little more each day? For my program in Kenya, I’m working on my toolkit: Shared stories. Counselors. Support groups. Tools to connect you to other families, other patients. Better medicines. Money to make our programs more effective, more accessible.

Hope takes many different forms. We walk together. And I still believe that love wins.

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Shining

For International Women’s Day…

If you want to stand for women and girls around the world, you have to think about HIV. You have to consider the ways that HIV tries to knock women down. HIV is the leading cause of death and disease in women ages 15 to 44 in low & middle-income countries. Many, many young women die from the complications of pregnancy and giving birth around the world, but HIV snatches the most lives. This damn virus.

On International Women’s Day, let me draw your attention to Lucy. I invite you to stand for Lucy.

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Two weeks ago, Lucy peeked into my office within the AMPATH pediatric HIV clinic with two pieces of paper in her hand and a special light in her eyes. She had just seen one of our Kenyan clinical officers, and the clinical officer had sent her my way.

It is very rare that a patient is sent to me because of good news. Usually, they get referred to me when there are complications.

There was a time about a year ago when I was seeing Lucy once a week because she was very sick with a complication of her HIV infection. We switched around her medicines, we gave her money for the bus ride to clinic once a week, we hoped… Thankfully, Lucy made it through those months of sickness. She is 14 now — healthy and happy and stable on her HIV medicines.

Lucy is not defined by her virus. The light in her eyes comes from her other achievements. She had brought with her to clinic a copy of her grades for the previous semester, and she had reason to be proud – a row of perfect As in every subject. A row of perfect As from a school where anything above a B is a major accomplishment. Lucy was shining.

Lucy’s other paper made me awfully happy too – a lab slip where the numbers indicated that there was no virus to be found in her bloodstream and that her immune system has the cells it needs to protect her from infections. My smile matched hers.

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There are plenty of lousy things we could think of on this International Women’s Day – so many women and girls dying, being infected, being abused, being deprived of opportunity — but let’s think about shining Lucy.

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I have an idea!

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The people who know me best know that I adore this t-shirt because there is nothing I love better than a new idea. (Thanks for the creation, People for Urban Progress! Of course I adore anything made locally in Fountain Square as well!)

I have spent the week in Boston, completely immersed in new ideas at the CROI meetings (Conference on Retroviruses and Opportunistic Infections – basically HIV!) Busy, exhausting, and completely inspiring. It has been a privilege to network and present and meet with colleagues from around the world to think together about new ideas for taking care of children with HIV.

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Some of my favorite new ideas for the week:

  • Efforts to develop new formulations of HIV medicines for children that meet my wishlist — the right doses of the right medicines for growing children, in versions that they can take (liquids, granules that can be sprinkled in food) and that do not taste terrible. (These should not be new ideas, but they are. No one thinks about kids’ medicines.)
  • A new project I am leading with sites in Southern Africa and Asia and East Africa to figure out the best way to measure children’s adherence to HIV medicines.
  • Monitoring medication adherence with all sorts of wild, convenient, innovative technologies that can tell me right away if a family is having problems with this challenge of having a child take medicines twice a day, every day.
  • A global cohort of children from sites all around the world that could be put together to answer big questions that we have about how to take the best care of children with HIV.
  • Actually figuring out whether our children’s HIV viruses are becoming resistant to the medicines we are using by doing brand-new tests to look at the genotyping of the virus.

I was given a brand-new opportunity at this meeting as well; I was elected as the new chair for the pediatric group of a global consortium of HIV care sites, the world’s biggest collaboration of HIV care programs. An exciting honor – and a great way to come up with new ideas for helping kids around the world.

And the pediatric HIV world was also abuzz with the possibility that we have officially identified another baby who is HIV-free after really aggressive early treatment of an HIV infection in the first hours after birth. I would actually bet that there are more of these HIV remissions in babies (we are reluctant to say “HIV cure”, but it just might be!), but only sites that can do lots and lots and lots of tests can prove that it’s actually happened. Sites like ours in Kenya can only wonder…

So, lots of new ideas here in Boston. A good week for me.

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Wordless Wednesday: Carnaval Indy Style

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(several photos via @IndyStar)

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