Monday, January 23, 2012

Perpetual peril

kw: book reviews, nonfiction, memoirs, allergies

My first memory of my youngest cousin is of a toddler in a show suit, crying because of a bad coughing fit. Asthma. I soon learned she was living on Rice Krispies and goat milk. When we ate pizza she couldn't eat in the same room, because airborne flour dust might bring on an attack. This was in the days before the EpiPen. Her parents bought Benadryl by the quart jar. She had desensitizing shots three times a week for decades, and was able to eat her first half-slice of wheat bread at the age of twenty. That same year, she had her tubes tied, telling us all later, "I wouldn't wish my genes on another generation."

Sandra Beasley, author of Don't Kill the Birthday Girl: Tales From an Allergic Life, has a more hopeful take on her future. She does hope to have children, and in late chapters of the book, ruminates on the precautions she might have to take if the baby can tolerate foods that she can't abide, when a kiss by her infant might kill her.

Throughout the book, we learn that for the severely allergic, paranoia is a way of life. She and those like her literally walk a minefield all the time. Just how closely can you interview the waiter or the cook before ordering a meal, and hoping that the knife used to cut your vegetables was washed after being used to cut a forbidden tomato? The severely allergic, using their bodies as probes of their environment, learn to detect the slightest tingle after having a tiny taste of something new. The devil of it is, a new allergic manifestation only erupts after that first taste, once your body has had a day or two to process all the new proteins and decide it doesn't "like" one of them. You are fine until that second taste. Day in and day out, you are your own experimental animal, your own "taster" for whom every cup may bear deadly poison.

Now imagine being a spouse or lover of such a person. Are you callous enough to sneak a square of chocolate just before greeting your inamorata with a kiss, knowing that a trip to the ER is likely to follow? Are you willing to keep a peculiar kind of Kosher household, for which nothing that is risky for the other can be allowed in the door? Not only so, when you are out and have a bite at the corner café, are you as careful as you need to be? It does no good for an allergic person to marry a similarly afflicted person; they are very unlikely to have precisely the same sensitivities, so they need to exclude everything that might endanger either one of them.

In the face of all this, Ms Beasley writes with amazing good humor. It would certainly be tempting to grow up with a pretty sour attitude, but she has not. She is attacking the problem head-on. One chapter recounts her attendance at a clinicians' conference sponsored by AAAAI (American Academy of Allergy, Asthma, and Immunology). Amid reporters interviewing doctors and looking for any evidence of a "cure" for allergy, she was trying to learn what she could about any new understanding of these syndromes. So far, less is known than anyone would like, and the recent "worms can cure it" hypothesis is also wanting; it helps some folks, but far too few.

Over time, she has built up a network of others who know allergies from the inside. The allergic need such support networks. She also keeps close tabs on the latest from FAAN and FAI (those are the Food Allergy and Anaphylaxis Network and the Food Allergy Initiative). That, and constant vigilance, plus a supply of Benadryl and a fresh EpiPen, are what it takes to live in a minefield.

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