Kevin Patterson – on leprosy.
Saipan, Northern Marianas
December 4, 2000
Dear Paul:
Since I wrote you last I’ve come to Saipan, in the Northern Mariana Islands in the Western Pacific. This part of the world seems to draw me. When I was in Halifax, I found myself counting the months until I could get back into my boat and get to sea again. I accomplished a version of that, I guess, by coming here. I still have my residency to finish – but part of that includes this elective I’ve set up, a three-month stint of community internal medicine here on Saipan. Working here reminds me a little of working as a G.P. in the Canadian Arctic – with the TB and parasitic diseases – but then I hear the surf exploding against the reef and the resemblance seems not so great, after all.
I’ve been spending some time at the leprosy clinic. The patients come in – the sweatshop workers from the Philippines, the indigenous Chamoros, and, very occasionally, a North American – and they show us their pale numb spot(s) and we nod and try to decide if it is getting better or not. We encourage them to keep taking their pills. They say they will. They make their appointment to come back in a month. The encounters are quick and uneventful. The whole time, I’m just staring.
Leprosy is a fascinating disease, and when I’m with these people I have to consciously restrain myself. Being very interested can look a lot like delight. You wouldn’t want anyone thinking you were delighted that they have leprosy. You wouldn’t want to be delighted to see someone with leprosy. Even if you were.
Leprosy is fascinating because it is a scourge in the old-fashioned sense. It blinds, disfigures, and maims, and it is infectious and inspires strong responses in everyone. The organism that causes it, Mycobacterium leprae, prefers to grow in relatively cool areas of the body: in the skin and the peripheral nerves, especially in places like the tip of the nose, the eyes, the arms and legs. Much of the damage it causes is indirect, a result of deadened nerves: numb fingers are forever being scalded, pinched and burned without being noticed by their owner. Infections and recurrent trauma erode the affected tissue and where the infection is in the skin itself it looks a lot like eczema, except it never waxes and wanes, it just slowly expands and worsens.
M. leprae is a lot like the tuberculosis bacterium, and both critters have similarly storied pasts. The Pacific Islands once had a great many leper colonies, and it has only been in the last forty years that effective antibiotics have been available to treat leprosy, also known as “Hansen’s Disease,” after Hansen, the fellow who found the bug that causes it. I prefer “leprosy.” That’s what the Bible and the Koran call it. That’s what they called it in Papillon. “Hansen’s Disease” is misleadingly aseptic sounding. Leprosy is a septic situation.
The thing is that there is no shortage of diseases that blind and maim – diabetes leaps to mind immediately, especially among Pacific Islanders, where relative inactivity and North American diets are killing a generation of young people. The traditional elderly, who still eat taro root and rice mostly, are fine, growing old and appalled as their Spam-eating children and grandchildren develop kidney failure and lose limbs. The hospital here is full of wheelchairs creaking along, laden with legless Micronesians. It is the same situation, for comparable genetic reasons, in the Canadian sub-Arctic, among the Cree and Chipewyan, and in New Mexico with the Pima Indians, who have the world’s highest prevalence of diabetes. All these peoples are genetically adapted to recurrent famine and when they eat too rich a diet, they develop a peculiarly aggressive type of diabetes: their kidneys fail decades earlier than one would normally anticipate, gangrene develops in the feet and twenty-eight-year-olds have heart attacks. “Adult onset diabetes” is diagnosed in nine-year-olds.
Diabetes is as dull as dishwater. The only definitive treatment for the obesity-related version is weight loss, exercise and dietary modification, but here, as in North America, no one seems to succeed in doing any of that for a sustained period. And so treating it feels like swimming in Jello. It is tragic and important, but there isn’t an internist on this island – or many, anywhere else – who doesn’t groan about the problem. The other day one said to me, shrugging, “they all say they only eat salad, and every month they’re five kilos heavier and their glycosylated hemoglobin is two percent higher. You just have to make sure there’s room in the dialysis clinic, because you know that’s where things are headed.” That’s what I mean: it feels like you’re trying to forestall winter.
Diabetes is a disease of affluence – sort of. Here in the Pacific, the western diet is comparatively new and accompanied the increased standard of living that followed the post-war development. In the more traditional and much poorer islands of Yap and Truk just to the south, there is less obesity and far less diabetes. On the other hand the infant mortality rate is higher. In North America, although the obesity rate among adults is historically unprecedented, and is still climbing rapidly, obesity and diabetes both affect the poor disproportionately. So it’s a complicated thing, a consequence of being rich enough to have way more than enough to eat but not rich enough to be so consumed by bourgeois vanity to the point that you buy yourself an Abdo-Cizer.
Leprosy, on the other hand, is one cool disease; it contains no such connotations of self-made difficulty. It is unpredictable and when it occurs it is dreadful, but there is nothing inevitable and expected about it.
Even saying this aloud feels like a sort of betrayal to the diabetics and to everyone else with lifestyle-associated sickness. It isn’t that losing a leg is ever anything but a moving and dreadful event. It’s just that it’s also predictable and familiar. I suppose tertiary syphilis was like this fifty years ago, and tuberculosis too, for that matter. What do you suppose the dying consumptive George Orwell would have had to say if he knew how dull his doctor found all that coughing?
The whole profession celebrates illnesses that are unusual and therefore interesting. Weekly rounds in North American hospitals are typically devoted to rare departures from the steady stream of degenerative and lifestyle-related diseases. Every doctor’s ears perk up at the news of a lung mass that turned out to be fungus rather than the expected cancer, or of someone with chest pain that seemed like a routine heart attack but whose aorta, in fact, was ripping apart. These are called zebras, as in, “when you hear hoof beats, think horses, not zebras,” a reminder that “common things occur commonly.” And boy, do they ever. If you took away heart attacks, strokes, and the top four cancers – lung, breast, colon and prostate – Christ, no one in the developed world would ever die of anything. There are a million ways people can get seriously sick and there are basically six ways that North Americans ever do. It’s as plain in medicine as it is in art: wealth makes us boring.
On Saipan right now there is an outbreak of leptospirosis, a disease I have never even seen in Canada. It’s caused by a family of bacteria that live in various animals, but the most dangerous one, Leptospira icterohemorrhagia, is most commonly associated with rats. The disease is generally contracted from exposure to rat urine. When the infection is severe it causes kidney failure and severe inflammation in the lungs. There has been a death already, of a young man whose stoic mother wept disconsolately as she snipped hair from his head and put it into a little bag, breaking the heart of everyone here. But with treatment – simple penicillin, usually – it generally gets better. And when it does, people get up and go home and that scene with the scissors is what has been prevented, with a drug that costs pennies.
Two days ago I saw a Filipina contract worker who has Pott’s Disease, tuberculosis of the spine. She works as a janitor during the day and drives a cab at night. When her vertebra collapsed from the eroding infection in her bone she was in so much pain she bought a back brace that cost her a month’s salary so that she could continue to work both jobs. She’s forty and supports her family without assistance. Her infection is clearing quickly now and she no longer needs the brace. She wanted to know if there was anyone we could give it to.
Kevin
