One little thing

This is a bit of a sad story.


About a month ago, I was in Dr. Frank's office looking for some cable or another when he beckoned for me to come behind his desk and look at his computer screen. At first I couldn't tell what I was looking at. Then I realized it was a picture of a little girl curled up on a procedure table. Her skin looked like it was made out of dogwood bark. She hardly looked like a human being at all. Dr. Frank said this was a patient who had just come in. He had no idea what was wrong with her, and he was putting together a report to send off to his dermatology contacts for a consult. Dr. Frank was a cardiac anesthesiologist by training, and he readily admits that a lot of the things he sees in Tanzania, he doesn’t know much about. So he has cultivated an extensive network of clinicians around the globe who have agreed to provide pro bono consultations within their specialties. Anyway, I was a little shaken by the photograph, but it was my first week in Africa, and it was soon pushed from my mind by a torrent of other goings on.

After a few weeks, though, I started to notice a tiny figure being pushed around the clinic in a wheelchair. She was wrapped up in cloth so that you could hardly see the person inside.

Then one day, Nancy, one of our long-term volunteer nurses, told me the story of the little girl in the wheelchair. She had come to the clinic some years before with the same skin condition. Her skin just died and built up into a thick layer like a lizard continuously shedding its skin but never scratching it off. The first time she came she was, aside from her skin and some minor infections, a perfectly healthy little girl. Then she disappeared for two years, and we hadn’t heard of her until she came back last month. The details are vague, but as best I can tell, when she was five, her mother had another baby and she took the little girl with the skin disease and put her in a bed in the back room. She stayed in that bed for two years, curled in the fetal position, wasting away from a healthy girl with flaky skin to the skeletal figure I had seen in the photograph on Dr. Frank’s computer.

Eventually some of her aunts grew concerned, perhaps because of the smell, and convinced the mother to let them bring her to the clinic. When they brought her here, she could hardly speak, couldn’t control her bowels, couldn’t stand… She had been curled up for so long that her muscles had atrophied and her tendons had shrunk so that she couldn’t straighten her legs. Nancy said the biggest problem would be the psychological damage from being alone in that bed for so long. She needed as much stimulation as possible to help her come back from that.

It just so happened that earlier that day I had been cleaning and organizing the office when I found a giant, 64-color box of crayons tucked away in a corner. So I pulled out the best ones, stole a coloring book from the volunteer supplies and headed down to the ward.

The head ward nurse, Mama Mshana, was on duty, and she said I could go in an see the little girl. (She approved of the coloring book I guess.) When I went into her room, at first it looked like someone had just forgotten to make the bed. She was so small that her body hardly made a lump in the wrinkled sheets. Her skin looked better than before but still covered in a thick layer of dead, flaking tissue. Her hair had started growing back in in patches. Her eyes were closed, and she didn’t move at all when I came in.

“Is she asleep?” I asked.
“No. She just ate,” Mama Mshana told me.
“Can I touch her?” I said. Mama Mshana nodded. So I reached down and shook her little foot. At first no reaction. Then, without opening her eyes, she smiled.
“I knew she was faking,” Mama Mshana laughed. She helped the little girl sit up (she was so small) and showed her the crayons and coloring book I had brought. I was worried she wouldn’t know how to hold the crayon because she had never been to school. (My mother tells me this is an issue for some kids.) But she had no problem at all and immediately grabbed a crayon and started to carefully fill in, all inside the lines, a beautiful, blue cow.

It was a touching moment for me. If I had ever doubted that I was in the right place, doing the right thing, this was the sort of moment to put those doubts to rest.

I try to visit her every day if I can. I usually bring my guitar to play some songs (she says she likes the music) or a pad of stickers or some more colors of crayons. I talk to her in what little Kiswahili I have. I get Mary, the receptionist, to help me translate picture books so I can read to her. Some days she won’t give me the time of day. On a good day she’ll say a word or two. On a really good day she smiles.

The doctors are working on special leg braces to keep her legs straight at night. The nurses have a strict exercise schedule to help her relearn how to stand and, eventually, walk. It hurts a lot; you can hear her crying when they help her onto her special walker, but you’ve got to do what you’ve got to do.

I’m not sure what will happen to her or where she will go next. We finally got a diagnosis from a doctor in Germany. It's a genetic disorder that causes her to be unable to produce a certain enzyme. Her condition can't be cured, but it can be managed. I shudder to think of what would have happened if she hadn’t had this place to come to. For now its best to focus on helping her learn how to be a kid again: to walk, to smile, to draw, to laugh. The rest is just the rest, and happens after.