A Vigil for Jackson:

Jackson has lived his life in a crummy cinderblock house, two hours and several tap tap rides away from here. He is dying, or some days seems to be, in a one star hotel.

John met Jackson when the good doctor brought back Faustina, another child with a heart problem, from the U.S. When Faustina’s relatives came to pick her up, her aunt said, “We know of a boy who also has a very sick heart.” Bring him to me, John said, and the next day Jackson showed up, very sick as advertised.

I doubt he was as sick then as he is now. He is exhausted, catching only a few minutes of sleep here and there, when his body will allow him. He can’t get comfortable; he’s on his back, then his stomach, then his side, then sitting in a chair, holding his head in his hands. He reclines on the chaise lounge with his arms over his head. His abdomen pulsates quickly, like a time bomb; his huge liver vibrates with each beat of his heart. No position feels right when your heart isn’t working properly.

Here’s the physiological explanation for what’s going on: his mitral valve is too tight, a condition known as mitral stenosis. This causes blood to back up in his left ventricle, stretching it to a grotesque size. Blood and fluid also fills his abdomen, which is why his liver is enlarged.

Given the meds he is on, Jackson isn’t getting rid of fluid as well as he might. “It’s hard to pin everything on his mitral stenois,” said John. He thinks there is something else going on, most likely pericarditis. Pericarditis is a restriction of the pericardium, which is the lining around the heart. Jackson probably has scar tissue from his operations which has hardened into a fibrous rind around the heart. As with his valve problems, the only solution for pericarditis is the knife.

The end result of all this physiological malfunction is that Jackson is suffering. He has lived most of his years, only half of them healthy, in a shack on the side of a mountain. Now he is dying in a hotel room with its comparative luxuries of hot water, a flush toilet, and air conditioning. He’s 21; we should be watching him live, not die, especially with something that is curable only 600 miles away.

Still all is not hopeless. I mentioned false hope in a previous post, but I really don’t believe in the concept. It’s oxymoronic: hope, by definition, can’t be hopeless. And today, Jackson got up, wearing his multi-colored swim trunks. “How’d you sleep?” asked John and he nodded, meaning better. He turned on the television and started watching some pseudo-Tex-Mex western staring Martin Short, Chevy Chase, and Steve Martin, all wearing ridiculously oversized black sombreros. A shooting star in the middle of a dark night.