Diagnosed at age twenty-two with lupus, an incurable scourge of a disease that causes chronic pain, Lillian China Smith decided to write about her experience—both to make sense of it and as a guidebook for other chronic pain sufferers. THE LUPUS DIARIES: My Life With Chronic Illness is the fascinating result. (She also writes frequently for The Mighty, a health website.) The book is organized topically, rather than chronologically. Some chapters have nuts-and-bolts titles such as “Mobility Aids,” “Managing Pharmacies,” and “How to Make Your Next Flare Easier on Yourself.” Others, like “Coming to Terms with Myself as Disabled,” are more existential. Smith was in pain long before her diagnosis, and as she narrates other life events—getting married, becoming a mother—the pain is her constant unwelcome companion, a Zelig she can’t shake.

Although the book is dedicated to “the proofreader Jo Barlow,” there are numerous errors throughout: misspellings, comma splices, punctuation snafus, shifting verb tenses, etc. For instance, “besides the spice rack” should have “beside” instead. Smith also describes using “a walker, a wheelchair, two canes, and a cane”—which might have been intended as “two crutches and a cane,” though the reader will never know for sure. These errors are distracting but not overwhelming. Tonally, Smith seems to aim for a mix of wry commentator and helpful cicerone. Sometimes she misses the mark, though, as when she writes, “Sex is a touchy subject. Sex with chronic illness is a touchy subject.” How much stronger this would be without the repetition of “touchy.”

Other times, she is clever and poetic, such as this gem of a sentence: “I smell like Band-Aids and Icy Hot, an NHL player and your grandmother, new skin and old skin.” And every now and then she writes something so beautiful and horrible and poignant that the reader stops and stares. In the following passage, she asks her doctor about physical intimacy: “I have this boyfriend, right… and um, we started dating when I was a bit better, and um… I mean I guess he expects me to do certain things that I can’t really do. I mean, I don’t know if he expects it, maybe he doesn’t, but I feel I should do them. I mean I’m a woman. And, well, I guess I’m not any more.”

THE LUPUS DIARIES will appeal not just to other pain sufferers but to any reader looking for a witty-yet-wistful tale of living with adversity.

Part memoir, part self-help, Lillian Smith’s extraordinary book THE LUPUS DIARIES: My Life With Chronic Illness is full of poignant moments and helpful advice.

~Anthony Aycock for IndieReader