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Shortest Way Home by Juliette Fay

The Shortest Way Home is a novel that follows 44-year-old Sean as he returns to the United States after 20 years of serving as a nurse in war-torn and underdeveloped regions within South America and Africa. Upon his return, he discovers the extent to which his family has become dysfunctional. Sean’s family has never been normal, though. When he was young, Sean’s mother passed away from head trauma related to her Huntington’s disease, causing a chain reaction of disastrous events in his childhood. Now, back in Belham, Massachusetts, Sean finds his aging Aunt Vivian trying to take care of his orphaned nephew Kevin while his sister Deirdre itches to leave Belham to pursue her acting career in New York City.

Sean has no intention of staying permanently in Belham when he arrives. He desires to recuperate from his stressful job and then make his way down to Haiti to help with the lingering health repercussions caused by the 2010 earthquake. However, a series of events makes Sean realize that he needs to stay in Massachusetts.

When Sean was a child, his mother was diagnosed with Huntington’s disease at Tufts University’s Medical Center. Her sister, Aunt Vivian, never showed signs of the disease. The three children, Sean, Deirdre, and Hugh, moved in with Aunt Vivian along with their father when 15-year-old Sean’s mother died. However, unable to handle his loss and care for his three children, Sean’s father disappeared for over 30 years, leaving the children under the care of the harsh, unsympathetic Aunt Vivian.

While working at a medical clinic in Kenya, Sean discussed his mother’s disease with a doctor on staff. She has a difficult time understanding why Sean, who is 44 years old, has never been tested for the disease. None of the three children made the decision to test and Sean has difficulties explaining why he didn’t want to know. He told her to “Put yourself in my shoes. If I were to tell you that I could say for certain when and how’d you die, and that you could linger for years, becoming an enormous burden to your family…would you still jump at the chance?” (p. 16)

Sean takes every measure he can to prevent his DNA from passing on to the next generation, in case he does exhibit signs of the disease. He has a vasectomy and is still careful about using protection during intercourse.

Sean has never escaped the at-risk cloud hovering over his head. He never travelled for leisure, but he does have a plan in place if he ever becomes symptomatic. He intends to travel to Tierra del Fuego and commit suicide there as an exit route from the disease

As Sean settles in to his old hometown, he continues to run into his high school friends and acquaintances. Some of them are surprised to see him in such good shape, as they had assumed he would have the disease by now. One of his friends, Rebecca, becomes irritated by his presence at first because he told her in high school that he would be dead and gone by the time he reached this age. Other friends notice certain ailments of his, such as extreme back pain, and often attribute it to the beginning signs of the disease. However, Sean tells them that he believes he got lucky and did not inherit the mutant gene.

At this point, his Aunt Vivian, who is also at-risk for Huntington’s disease and never tested, is in her early 80’s. She is experiencing signs of dementia. His friends are concerned that it is late-onset HD, but Sean and his sister believe it is a form of Alzheimer’s. Aunt Vivian has no intention of visiting a doctor to determine the cause of her bouts of forgetfulness.

Kevin, Sean’s nephew, is at-risk for the disease as well. His father, Sean’s brother Hugh, passed away a few years prior from pneumonia and had never tested nor showed signs of the disease. However, Kevin deals with a sensitivity disorder and Sean doesn’t know the right time to discuss Kevin’s at-risk status with him. To further complicate matters, Kevin’s mother ran away before Hugh’s death, putting him under the care of Aunt Vivian. Sean realizes that he will probably be Kevin’s next caregiver.

Sean also decides to stay in order to commit to his new relationship with high school friend Rebecca. One of their arguments centers on the fact that Sean might need to become Kevin’s legal guardian, but has not found out if he will develop the disease. Sean accuses Rebecca of urging him to test because it is in her best interest for the relationship. Rebecca disagrees that this is not her intention. A diagnosis of the disease will devastate her as well and she is very scared and uncertain of his situation.

In the end, Sean decides to stay in Belham and mentions to Rebecca that he has started the process of genetic testing. He is ready to know.

The Shortest Way Home is a great read from Juliette Fay. Fay’s inspiration for the book came from a friend whose mother had Huntington’s disease. The friend had decided never to get tested and, in middle age, had not yet shown signs of the disease. Fay thought about what it must be like to be HD-negative yet grow up assuming you’ll develop the symptoms.

Fay does an excellent job of describing the hardships that Huntington’s disease families face, without misleading readers regarding scientific facts. The characters are very relatable, especially as they struggle to cope with Sean’s at-risk status as a middle-aged man. As the reader watches Sean struggle with his personal desires and the needs of his family, the storyline provides an excellent glimpse into the sacrifices, joys, and pains of living in a family affected by this disease.

This book is appropriate for young adults and older.

KP 2014