Saint Vitus' Dance

By Jill Rubalcaba
New York : Clarion Books, 1996
ISBN: 0-395-72768-5

Reviewed by Renette Davis

This is a wonderful book for young people about a 13-year-old girl, Melanie, whose mother has Huntington's Disease. It deals with Melanie's embarrassment, fear, and anger as her mother's symptoms develop, as well as her concern that she may someday be like her mother.

The first time Melanie realizes something is not quite right with her mother is when they are at the grocery store and her mother pitches a fit because the store is out of fresh dill. Then later she hears several women talking about her mother - how she was in church with no undergarments on and how she tried to send the electric bill without a stamp.

Melanie starts avoiding her friends, believing that everybody is talking about her mother. She even avoids her best friend, Marcy, until Marcy comes up to her in church and asks her how her mother is. She considers answering, "Just fine, thank you," but instead says, "Not too good. She's looking like a robot that's got a short in her wiring." Marcy takes her hand and squeezes it, and Melanie is glad for her friendship.

Melanie's mother continues to get worse, and her father seems not to notice that anything is wrong. However, one night Melanie hears a strange sound from the living room. She sneaks to the landing and sees her father bent over a photo album weeping. When her father finally goes to sleep, Melanie looks at the album and sees the pictures which had been taken the previous summer when her mother was healthy and happy.

Shortly after that, Melanie hears her father asking her mother where she is hiding the bottle. He tells Melanie's mother that her father was an alcoholic and he believes that she needs help. He decides to take her to a sanitorium for treatment. After three weeks, the people from the sanitorium call and say they want to run some tests, but they don't say what the tests are for.

Melanie's mother returns home from the sanitorium, and when Melanie gets home from school, she is shocked to see her mother in a wheelchair, her face contorting and her hands and feet jerking. Melanie overhears women talking about her, saying the words "Huntington's chorea", "dementia", "hereditary." The next day Melanie goes to the library and looks up the words. Now Melanie is worried not only about her mother, but also about herself.

When Melanie's father decides he has to put her mother in a nursing home, Melanie is angry and frightened. She thinks it's an insane asylum and refuses to go visit her mother. Finally, after Melanie gets in a fight at school, she and her father are able to talk about her feelings, and she eventually decides to go visit her mother.

Melanie is surprised to find that her mother is in a pleasant home, with staff who are kind and other patients who are friendly. Her mother looks much older and they have given her medication to control her movements, but Melanie's father says that he believes she knows what is going on. When Melanie reads to her mother, she knows that her mother is enjoying it. As Melanie leaves, she kisses her mother good-bye, holding her hands. She feels her mother squeeze her fingers when she whispers, "I love you."

After her mother dies, Melanie and her father work together in the garden that her mother loved. Melanie realizes that as time goes by, she doesn't think about Huntington's all the time. She believes that one day she will be able to "drop a spoon and just pick it up without thinking a thing of it, the way normal folks do."

I could not put this book down. Although it is written for young people, it will appeal to all ages. It deals with Melanie's feelings in a warm and sensitive manner, without being maudlin. It even has some humorous spots. It may be a little frightening for a young adult who knows Huntington's is in the family but has not yet become familiar with the symptoms. However, the author very skillfully helps Melanie come to grips with her feelings, and in doing so, I believe, also helps the reader.

I have just two objections to the author's portrayal of Huntington's Disease. One is that the symptoms progressed very quickly. One summer Melanie's mother is healthy and happy and the next summer she is dead. I think HD generally progresses much slower than that. The other objection is a statement which says that with Huntington's you always go crazy. While victims of Huntington's Disease often have psychological problems, I think there are many cases where they do not.

There is an author's note at the end which gives some good up-to-date information about Huntington's Disease, and the book closes with a positive note that one day HD will be a disease of our past. I highly recommend this book. Even if it were not about Huntington's Disease, I would do so because it is so well written.

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Last updated: Dec. 5, 2010