Laughter is eternity
If joy is real
I was pretty worried that Micah was not going to make it. When I first saw him in the AMPATH HIV clinic, he was one of those children who made me angry about the injustice of one little body bearing so many burdens. Cerebral palsy and HIV and a reactivation of chicken pox infection that was crippling one of his eyes. To make matters worse (if you can imagine worse), his father had died a few months before and his mother was having a terrible time scraping together enough food for her family of three to eat. Micah’s already-burdened body was frail and weak because he was lucky to get one meal a day.
Micah’s little body exposed the limits of what we can do. We cannot take away his HIV or his cerebral palsy. We cannot restore his sight in that eye. And, of course, we cannot bring back his father. I hate all of that.
But we fight within our limits: Medicines to make his virus sleep. Therapy to help him get closer and closer to walking. Food rations to let him and his family grow strong enough that his mother could return to work and he could sleep without an aching belly.
Even when we bang against our limits with angry fists, there is beauty if you look for it.
When I dropped by Micah’s house this weekend for a visit, my eyes filled with tears as he hugged me with a big smile and managed to say, “Daktari Rachel!” A neighbor in their shanty compound was playing loud lingala music, and Micah laughed and laughed and laughed as I danced him around the yard.
Me, looking skeptically at my roasting vegetables: I don’t know about this.
Housemate, from other room: That is not what you want to hear from the kitchen.
Me: That is what I always say in the kitchen!
….. a few minutes later….
Me, looking with concern at the stove top and my eggs: Wow, that is a lot of flames!
Housemate: That is REALLY what you do not want to hear from the kitchen.
Me: That is what I always say in the kitchen!
Most of the children who I saw in the pediatric HIV clinic today came with their parents or with the adults who have stepped into the hole left by the death of the children’s parents. Two came all by themselves.
Two solo adolescents, a 13-year-old and a 14-year-old, navigating the trip to clinic — the waiting to see the doctor, the questions and exam, the trip for a chest x-ray, the waiting for prescriptions — all by themselves. In many ways, they were quite similar to each other. Both have been infected with HIV since birth. Both have lost their mothers in the last year to this same virus. Both have been taking the medicines to keep HIV at bay in their bodies for about 5 years.
And yet, they were so different.
Simon has not been told that he has HIV. Although he is entrusted with the responsibility of walking for almost an hour to get to the clinic all by himself, he is not entrusted with this secret. And Simon is full of worry. When I ask him how he is, the first time he says he is fine except for his cough. But when I ask him a second time, after we have talked about the challenge of remembering to take his medicines every day, he tells me that his “mind is sometimes full of worries.”
“What are you worried about?” I ask softly. And he replies that he is worried that something is wrong with him and that he worries about the death of his mother. Without his father or another guardian to give me permission to talk with him freely about HIV, I cannot do what he wants, what he needs. I cannot tell him what it is that is wrong. I cannot talk about his absent mother, palpably missing from the chair next to him.
I try to reassure him that the medicines are keeping his body strong, that he is healthy and that he can continue to be healthy and strong if he takes the medicines. I tell him that his body is catching up after a spell last fall where he was quite sick. I tell him how sorry I am that his mother is not here. I tell him that I am planning to see him graduate from high school in four years and that he will need to make good plans for what he wants to do next. I tell him as much as I can without what he really needs – disclosure that he has HIV and frank discussion about what that means.
Simon leaves the clinic with his worries.
Sylvia knows that she has HIV. She was told last year by her mother, with the help of one of the nurses in the clinic. When I ask her more about it, she confesses that she suspected for some time that she had the virus, and that it was a relief to finally hear the words from her mother.
Her mother told her only a week before she died from this same virus. Naturally, Sylvia worried that she would die too. She has a grandmother, though, who gathered up Sylvia in the midst of her grief and whispered to her the words that she needed.
“You will live. You must have hope. You are strong.” Whispers of love. Whispers that healed a broken heart. Sylvia realized that, with the medicines, she is indeed strong. “With these medicines, I will live.” She said.
Sylvia is in Form One, the equivalent of being a freshman in high school. When I asked her what she wanted to do after high school, she answered confidently, “I will go to university.” Not, I want to go, but I WILL go.
“You will,” I told her with a smile. “We will keep you healthy.”
Sylvia walks to the lab to get her blood drawn with her head held high and a smile still on her face.
My team and I are putting in many, many hours to train disclosure counselors for the clinics, to develop useful materials for counseling, and to follow and support families through this process of disclosure to their children. Simon and Sylvia remind me exactly why we need to do this. Worry vs. Confidence.