This book is an eye-opener, not only because of how it treats a devastating disease, but because of how it treats the way it is possible to handle end of life decisions when we know our own expiration dates, complete with all of the details, reactions, and stages that we will endure. Boston policeman, Joe O’Brien, whose beat is in Charlestown, loves his life, his family and his work. Growing up, he lost his mom at a young age and was always told her death was caused by her alcohol addiction. When Joe discovers the truth about her death, he is forced to face a new reality of his own. The book gives the reader an in-depth, inside view of the world from the eye of a victim of Huntington’s disease. The knowledge that there is no way to dodge that bullet and no cure or possibility of remission can be devastating. How each person handles that knowledge is illuminating.
Joe O’Brien considers himself a family man and a good cop. The father of four healthy teenagers, he is still young, 36 years old, and in very good shape. He and his wife Rosie were married young, and both are in the prime of life, but occasionally, Joe has begun to notice that he is more forgetful than usual. However, when things are misplaced, he blames those around him, even losing his temper which is very unusual for him. When he falls he attributes it to an old knee injury. His odd behavior is rare enough that the family dismisses it and considers it an anomaly. Fast forward 7 years later, Joe is 43, and the problem has grown worse. When Joe can’t find his gun, he is furious because he thinks someone has moved it without permission. As a police officer, he has been trained to maintain control in the worst of situations, but his temper flares out of control. He dismisses his short temper, forgetfulness and recent tripping to exhaustion.
Others begin to notice that his behavior is growing stranger. When a really good friend calls Rosie to tell her that he is acting oddly out of character, she realizes that things may be getting out of control, and she insists that he see a doctor. Joe doesn’t do doctors, but he agrees to her wishes, to make her feel better. With that appointment, their nightmare begins. Upon reflection, Joe soon realizes that all these years he had been under the misconception that his mother was a drunk. In fact, his mother had been very ill. The family had chosen to hide her disease because her outbursts and odd body movements embarrassed them. Sadly, her mind had been completely intact, and she had not been inebriated. She had been aware of everything around her, but her body had been slowly failing her. His mom had Huntington’s disease.
All of the children are now at risk for this genetic disease that their father has discovered he carries and which is a death sentence. There is a gene test to discover if they will eventually come down with it, and each child has to decide for themselves if they can handle either living with or living without the knowledge. If someone has the gene, they will definitely come down with the disease at some point in their lives. The prognosis is of a horrible death which will follow 10-20 years from the onset. Usually it hits those in their 30’s and 40’s, but occasionally, science has discovered that when it is passed down through the father, it can have an even earlier onset.
All of the children are involved in strenuous work which requires a healthy body. JJ is a firefighter. Katie is a yoga instructor. Megan is a dancer with the Boston Ballet. Only Patrick, a bartender, seems to still be adrift with no purpose in life. The odds are that 50% of the children will be affected, but it could touch all or even none, as well. JJ is married to Colleen. She is a physical therapist, and she is completely aware of what the disease portends for all of them. She has also just discovered that after a long time trying, she is finally pregnant. This news will have a profound effect on them as they go forward. Is JJ carrying the gene? If he is, the child will possibly carry the gene. If she had known earlier, she could have had an in vitro procedure with gene therapy to prevent passing on the illness. Now it is too late to do anything but pray that JJ is not carrying the gene, and if he is, that the child does not get it.
As Joe begins to exhibit more and more symptoms, his job is in jeopardy as well as his insurance coverage and his pension. Dealing with the bureaucracy becomes another hurdle to overcome as well as dealing with this failure of his body. His fears, coupled with the fears and reactions of Rosie and his kids, often overwhelm him. Even as he is overcome, he must comfort them and control himself. With his daughter Katie’s help, he wants to set a good example for all of them to follow if they have to face his prognosis at some future date.
His symptoms are varied. He experiences temper tantrums, forgetfulness, uncontrolled movement of body parts and depression. They are all going to have to make sacrifices and adjustments to their lives in order to accommodate their father and their own futures. The dialogue, expressing their fears, dashed dreams and even their hopes, in the face of the disease that may be bearing down upon them, is authentic and often heartbreaking. The reader will suffer along with them as they agonize about their future and their choices.
In some ways, as we witness the slow demise of the O”Brien dog, Yaz, from the debilitating effects of old age, and as we witness society’s handling of suffering animals as opposed to the way tormented humans are treated, we will be forced to wonder who is treated more humanely, animals or humans. Yet, this novel is not really depressing. It extols and highlights the courage of the O’Briens as they faced their prospects. They were all forced to make different decisions based on their own individual needs. This novel was more inspiring and hopeful than I would have expected, and the author’s insight was illuminating and encouraging.
What I found to be negative was the contrived racial and religious component. I could understand the religious quandary from Rosie’s point of view, but I wasn’t sure it was truly pertinent to any other character’s experience. What I found particularly positive was the way each of them actually approached life after finding out that their life might end prematurely and unpleasantly. The book revealed many facts. 90% of potential victims of the disease choose not to find out if they are gene positive. Many choose to end their lives. Some cannot deal with the fact that they will slowly lose the ability to function while their minds remain totally aware of their body’s inability to communicate or live independently of others. Speech, swallowing and eventually even their breathing fails, along with all other bodily functions, as they near death.
While the description I am putting on paper may sound too depressing, the book is not. The family handles their plight with such dignity as they make their choices and their decisions, that the reader will feel hopeful, not hopeless. The humane treatment of animals contrasts with the way we treat humans, and that was a point of contention for me, since, in the book, I wasn’t sure which philosophy was the one being posited by the author, euthanasia or palliative care.
The fact that major decisions like divorce and retirement had to be considered by victims was particularly troubling to me, as well, and it seemed to indicate a failure of society to meet the needs of its citizens as it only considered appearances and its bottom line. Also, I thought that if someone’s behavior was odd because of an illness, but it didn’t jeopardize his ability to perform, the job should not be in jeopardy and early retirement with the loss of benefits should not be forced upon the victim. Why take away a person’s only means of survival when he already is being threatened with something far worse?
The book concentrated on the reactions of two characters, Joe and his youngest daughter Katie. When the book ends, Katie utters the worlds “I am” in the doctor’s office while waiting for the results of her testing. What do those words mean? Does she mean that she knows who she is and is still the same person regardless of the news she receives? The only thing that will have changed, regardless of her prognosis, is that she has more information than she had before. Because she now knows that she will still be the same person she was the moment before she got the news, are the words “I am”, all she has to think about? Those two words will form the basis of a very interesting book group discussion. Are we not all able to say “I am”, at some point and wouldn’t that be a great philosophy of life, making a conscious decision to simply be? The reader will be forced to consider and create their own philosophy of life. “I think, therefore I am”, in the words of Rene Descartes.
If someone knowingly became pregnant or impregnated someone without telling them of the risk, after finding out they had that gene, should they be held responsible in some way? Is it acceptable behavior? How will the victims feel if not all the children are gene positive? Will they resent the healthy one? Will the healthy one feel guilty because they do not have the potential for the disease? If you were the victim, would you want to find out if you had the gene? If you did, would you then hide in a closet, live life in the present moment and worry about the disease when it manifested itself more fully, or would you contemplate suicide rather than die in that horribly debilitated state? Should insurance and benefits be cut because of an illness beyond one’s control? Should someone who may carry the gene for a devastating illness be held responsible and have to bear the burden alone? There are so many questions and so few answers. Many of these questions will come to the reader, but they will not be resolved by the novel, rather they will be points of controversial discussion in a group.