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

Categories: Memoirs, Genetics