Portraits of Huntington's

Portraits of Huntington's: Choosing Joy Through Life Lessons is a followup to Carmen Leal's previous work on Huntington Disease, Faces of Huntington's; some of its content is, as well, reprinted from an earlier inspirational book, Pinches of Salt, Prisms of Light. Fans of Leal's previous work will find much to appreciate here; newcomers will have to decide whether the particular strengths of this book meet their needs.

The book is intended as a collection of "uplifting" anecdotes and encouragement, drawn from Leal's personal experiences married to a man with Huntington Disease. It has a distinct but not pervasive Christian perspective; it is not an overtly religious book but the author's religious beliefs are brought out. It is not didactic and does not advise on the practical necessities of caring for a person with HD; in fact, though Leal's experiences, and her stories, are specific to life with a person with HD, most of her message is applicable to anyone.

The book is divided into sections representing different virtues or strengths ("Knowledge," "Laughter," "Patience," "Compassion," "Faith," "Love," "Hope," "Joy"); each contains a handful of anecdotes apparently intended to illustrate the theme of the section. (The link is tenuous in some cases; the various sections do not seem all that different from one another.) With no introductory or discursive sections, the book does not draw conclusions from its stories or attempt to synthesize them into broad principles; it is not a "self-help" book or a guide for caregivers of those with debilitative disease. It is simply a collection of "heartwarming stories"; the overall message, if there is one, is that an optimistic perspective and a great deal of tolerance are required to meet challenges.

The stories range in tone from rueful to humorous. The anecdotes tend not to be particularly dramatic (a mouse in the kitchen, packing the wrong things for a trip overseas). The closing messages with which Leal ends each story are equally banal. ("[R]emember this: your worst fears might never be realized." "[L]ook for the miracles." "[O]ur hopes have a better chance of being realized if we are the joyful generation.") The included poems and lyrics by her friends and relatives ("In a world often heartless and cruel / Where our children are grieving in school / I look to the sky / And ask God 'Why oh why?'"), and the just-slightly-awkward pencil sketches prefacing each section, drawn by another of Leal's friends, add to the painfully sincere tone of the entire work.

For all that, Leal's love for her husband, Dave, and the genuine conflict she feels, caught between her desire to assist him and the real difficulties of doing so, come through in an authentic way. In places, she manages to convey the pathos of what has been lost -- both for her and Dave -- to his disease: her contrast of her husband's pre-symptomatic period, as an intelligent, vigorous man with an MBA, with his childlike, almost incommunicative personality late in the disease progression (his single greatest joy was a day spent at Disneyworld, where he met a person dressed in a Goofy cartoon costume), is poignant. Her sense of humor about her challenges shapes each of the stories, and she brings it to her understanding of her husband's condition as well (she is particularly good-natured about one of the few distinctive personality traits that persists through his HD-related deterioration: his fondness for good-looking women, which leads him to wander into Sarah Michelle Gellar films at the local theater, and develop crushes on his nursing staff). His struggles, and hers, to maintain a familial relationship -- between themselves, and between Dave and her children -- as his condition worsens are especially moving, and the breakthrough moments when he blurts out "I love you," or responds when they say it to him, transcend any amount of clunky prose.

In the end, Portraits of Huntington's will appeal to those who seek brief, optimistic diversions as they struggle with their own burdens; it will especially hearten family members or caregivers of those with chronic and debilitating diseases, who will surely find Leal's stories familiar and her positive take on them inspiring. There is something to be learned from the book about dealing with long-term illness and caregiving, and especially about maintaining a sense of humor while doing so. The book is not a primer for caregivers, still less an educational tool regarding HD. (It does not even particularly "portray" those with the disease. Most of the stories would be equally effective if the subject had had some other disease, making the book less about people struggling with HD per se than it is about people facing any draining, demanding, chronic burden.) But as light reading with an optimistic tone and a useful message, the book fills a certain niche. Family members and caregivers of persons with HD and other debilitating diseases, and who appreciate "uplifting" literature, may find it reassuring and enjoyable.

© 2004 Kevin T. Keith

Link: Author website

Kevin T. Keith, M.A., City College, CUNY