Customer Reviews

The Test: Living in the Shadow of Huntington's Disease

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Couldn't wait to read this book, as my father is struggling with Huntington's Disease, which, of course, meant my own struggle with "to test or not to test." That said, I'm sorry to report that I was sorely disappointed. While I obviously empathize with the subject matter, the inaccuracies in this book drove me nuts and stained this author's credibility with me. Being the journalist that Mr. Barema is I would think an attention to details would be a top priority. Not so, as is evidenced by his bad habit of attributing songs to Woody Guthrie (the most notable public figure with Huntington's) that Woody didn't author. "Good Morning America, How Are Ya?" is one. First off, Barema mistitles the song. It's called "The City of New Orleans" and was written by Steve Goodman. It was sung by Arlo Guthrie, NOT Woody. "Starry, Starry Night" is another notch inexplicably placed on Woody's song belt. The song was written by Don Mclean. Listen, Mr. Barema, to an author who DID get her facts straight in a book on Bob Dylan, if you're going to make frequent references to a hero like Woody know your game. Also, while the back cover blurb "Huntington's causes death within five to ten years" is gripping and more than likely geared toward sucking in the bookstore browser, it's simply not true. According to every medical web site I've ever haunted since this insidious disease entered our lives (and believe me folks, I've dropped in on them all) death from HD comes within 10-20 years. This is nothing more than an unfortunate and unsettling marketing ploy in my opinion. Apart from facts that fly around like pollen in this memoir, I didn't care for the clipped writing style. Unlike "Publisher's Weekly" it didn't hit me as "moving" or "intense" so much as annoying. Anyway, a real letdown, this one. Save your money and purchase a Woody Guthrie biography instead.

My wife has Huntington's Disease and our two sons have this issue to face themselves (whether to take the test that will tell them if they have the rogue gene and will inherit Huntington's Disease, or whether to continue living with uncertainty; with the 50/50 risk of developing the symptoms in their late 30s or 40s). So, I bought The Test to see if there is any insightful thinking in it that could help them. There isn't.

Journalists assume they can write books (the author is a journalist). I know this because I am a journalist and too many of my colleagues assume book-writing is the same skill. It clearly isn't. Also, as no translator is credited at the beginning of the book, I assume Mr. Barema either wrote it in English himself or wrote two versions - one in English and the other in French - on the assumption that his English writing was good enough for the publisher not to get a translator in to do the English version for him (he is French, but spends a lot of time in the USA and studied in the US). Unfortunately, the English is not good enough. It lacks subtlety and, often, clarity. And, as another reviewer has mentioned, below, the facts are too often simply wrong, which is far too casual and thoughtless when the subject matter is so vital for the readers, many of whom will be at risk themselves and will have bought the book for help in dealing with that.

I don't think they will find it, as I don't think it was written to help anyone. It seems to be more of an attempt to turn a personal misfortune into a dramatic work. The material has to be researched and absolutely right so as not to mislead readers who are in the same situation as the author, for whom this is information literally about their own life or death. This book isn't well-researched. Nor is it well structured.

I helped my wife put together her just-published book Learning To Live With Huntington's Disease, and we know how people at risk of this illness need information that has been checked and double-checked to avoid misleading them.

Despite the author's obvious love for his sister and brother, and his horror that they have the disease, there is also a lack of empathy for people with Huntington's in this book that I found shallow. The other people around the author, who are supposed to be central characters to his story, are shadowy and insubstantial and you never get a proper sense of them. You get the feeling the author doesn't either. People with this illness do not have 'nothing in their heads', as Mr. Barema seems to assume sometimes. Nor are they all insane or monstrous, as he says on several occasions. He seems to be over-generalizing from the terrible stories and experiences he had as a child when his mother was dying with Huntington's Disease. Even in the last stages of the illness this is not necessarily always the case. It seems to me his own fear of the illness has led him to play up the cliches.

You can live positively with this illness, even to the last, with enough determination and love. I suspect I am being too harsh. I know my own older son went through several years where he was living a life off the rails, where he was focussed on himself and not on those around him properly. Who can blame him when he had to absorb the information that there was a 50% chance he would not have a future. He pulled through that stage after several years and got himself back together, after we almost lost him.

I feel someone at that stage of the grieving process (this is a process of grieving for your future) who has come through the 'why me?' self-obsessed phase should have written this book to encourage people at risk to realize that yes, it is common to fall apart as your world falls apart around you (which seems to be the stage Mr. Barema was at when writing this book), but that, with love from others AND yourself, you can come thru that stage and become strong again. As Hemingway wrote, the world breaks all of us. But some of us are strong at the broken places. Exactly the same applies to Huntington's Disease. I wish this had been a better book. As it is, I will not be recommending it to my sons as I think it would upset them more than help them.

Aside from the inaccurate statistics in this book, it does serve another purpose.

Barema focuses on the anxiety, emotional turmoil and obsessive behavior that can occur during the test decision making process, which includes mothers/fathers, sisters/brothers, wives/husbands, children, doctors, etc;

Barema also writes about the issues of Huntington's Disease and the overwhelming struggle to live rationally while feeling irrational.

It seems to be a good book for those considering testing for HD and a real effort to educate anyone who may think that taking "The Test" may be as simple as just getting a blood test.

The Test is a journalist's first-person account of what it means to live at risk for Huntington's Disease. The everyday experience of hundreds of thousands, it is difficult for most people to imagine, and Jean Berera has done well in humanizing what media usually sell as unimaginable. The difficulties that HD brings to relationships within a family are thoughtfully addressed. I didn't give this book a higher rating because I disapprove of the author's (or editor's) decision not to disclose his gene status until the end of the book, using it as a kind of nonfictional plot device. In my reading, the suspense that this decision inevitably promoted detracted from the author's thoughtful reflections.

When I read the book, yes I was frustrated with the inacurracies. But then I looked at it as the experience of 1 person. To me it is more frustrating that the publisher's review is so inaccurate. 5 to 10 years???. The last medical statistics I have read for adult onset showed that a person would expect to live 10 to 35 years depending on other health factors at onset, as well as health care, diet and excercise after onset.
We do not need more misinformation spread about this disease. But we do need to listen more to the people who experience it first hand. I have learned much from people with Huntington's who could express themselves as my husband is one who could not mentally evaluate his own Huntington's experience.

As the mother of three young adults at risk for Huntington's, I did not find the book helpful in discussing the choice they must make, to test or not to test.

I read this book in French, so I cannot comment on the translation, but I do disagree with the above comments regarding the content. Anyone who is considering the test for Huntington's Disease should read this book. I found it thought-provoking and worthwhile.