One of My Teachers

Five years ago, when I was first trying to figure out the best ways to help families in places like Kenya give their children medicines every single day, I interviewed Mary. For months, I interviewed mothers and fathers and grandmothers and aunties about what it meant to care for a child with HIV and to try to give them all of these medicines. As I prepare to present the results of five years of work at the International AIDS Society meetings in Malaysia next week, I am thinking about what I learned from Mary.

DSC_3835

Mary, the mother of three children, is infected with HIV herself. When she comes to the HIV clinic every month, she walks for almost two hours, a journey made much more slow by walking with a seven-year-old over this rough distance. Mary cannot afford even the 10 cents for the public bus. I still remember my first trip to her house.

To get to there, we drove along rutted dirt paths, weaving around holes and the deeper trenches and swamps of mud. The thing I remember about her house was that I did not realize it was a house. She lives in a small structure made of that same mud and topped with a tin roof.  The whole thing measured about 6 feet by 10 feet.  From the outside, you might think (like I did) that it was a shelter for a cow or a goat; you would not guess that a seven-year-old, a nine-year-old, a mentally challenged thirteen-year-old and their mother all lived inside. I could not figure out where they all slept, even lying on the floor side-by-side on a sleeping mat.

Mary has a sweet, ready smile. As she welcomed us in, she insisted on pouring me tea. (Such selfless hospitality for a guest, always. I eat and drink whatever I am given in these homes, no matter how likely to make me sick. Sausage of questionable origin and age? Sure. Thank you very much.)

Mary's husband died from HIV several years ago.  When Mary and her youngest had wasted down to skin and bones ("I looked like I was already dead," she said in Swahili), they tried the herbs from the local healer.  Finally, when they both had a cough that would not go away, they went to the hospital where both Mary and her seven-year-old were diagnosed with HIV.  They were enrolled in our AMPATH HIV clinics and started on antiretroviral therapy, the medicine for HIV.

"I am alive again," she said. "I am alive because of these medicines."

The mud house and the bit of land are not hers.  After she was diagnosed with HIV, Mary was forced to leave her village and her extended family. She was shunned for "bringing this disease to the family." She stays on this property at the mercy of her son's teacher, who wanted someone to live there to make sure that the "neighborhood drunkards" did not get into the maize crop.

Mary taught me things that I have now heard over and over again. Mary talked about how she feels that she has to hide the medicines, the diagnosis, their trips to clinic -- how she has to hide everything. She is ashamed and feels guilty, and her pastor tells her that this is exactly how she should feel. All of this makes it hard to take the medicines. She talked about the challenges with giving her child the HIV medicines when Mary arrives home after her daughter has fallen asleep. Mary says that when there is no food to eat, the medicines make her daughter feel nauseous and so sometimes she does not give her the medicines when there is no food.

Mary taught me some of the questions that we ask all families now: Who knows that your child takes these medicines? Do you have anyone to help you? Is food a problem for you? Mary taught me some of the questions that we will be recommending next week for clinics across the world that care for HIV-infected children. Mary's daughter is 12 now, and last month I had to tell her that she had HIV. She was refusing to take her medicines because she did not know why she was taking them. Our next challenge, the next thing that Mary and her daughter are teaching me has to do with how to best walk families through that big challenge too. That's the next thing we want to start sharing around the world.

Posted at 15:46

0 Comments:

Post a comment

Tags

Latest comments

Archive