Blog Section

Eternal on the Water by Joseph Monninger

51q4PJYobWL._SX331_BO1,204,203,200_ In Eternal on the Water Jonathan Cobb meets the love of his life, Mary, while kayaking in backcountry Maine. Their perfect love is shortened by Mary’s illness of Huntington’s disease (HD). Published in 2010, this book is a fictional account of Jonathan and Mary coming to terms with the consequences of HD and the difficult decisions they have to make.

Summary: (Spoiler Alert!)

The book is primarily told from Jonathan’s perspective as he relates his and Mary’s love story to a police officer after Mary’s dead body is found on the Allagash River. The story begins when the two unexpectedly meet while kayaking on the same river years earlier. Jonathan is taking a break from his teaching job to follow Thoreau’s path down the river and Mary is lecturing group of girls with special needs about ravens, her academic specialty.

The two are quickly united by their love for nature when Mary reveals that she has a family history of HD. She has never been tested but feels certain she carries the disease. It quickly becomes clear that Jonathan and Mary are soul mates. However, Mary is hesitant to get involved with Jonathan because she potentially has a debilitating and life-ending disease.

Although Mary does not want to know her genetic test results, she agrees to let her mother disclose her results to Jonathan. Confident that Mary is the love of his life, Jonathan does not let her positive HD status deter them from having a happy life together. The story follows the couple through their travels in Indonesia and home in New England.

As the years pass, Mary begins to develop symptoms of HD. After watching her father struggle to the end with the disease, she decided long ago that once her quality of life began to deteriorate, she would end her life. She asks Jonathan and her family to support her in this decision. The book ends with a celebration of Mary’s life, as she floats for her final time down the Allagash River.

Portrayal of Huntington’s disease:

Huntington’s disease and associated challenges figure prominently in this work of fiction. Mary informs Jonathan about the genetic disease beginning on page 97.

Public Perception
“I often tell people my father died of a heart attack in a Chinese restaurant, but that’s not true. He died of Huntington’s when he was forty-one” (97).

Mary accurately describes the symptoms, prognosis, and discovery of the gene for HD. Despite her candid acceptance of her fate, she keeps the disease a secret from most people. This decision reflects the history of stigma associated with Huntington’s and highlights the intensely personal nature of coming to terms with having HD in one’s family.

Genetic Testing
“What if the test comes out and I learn I won’t make it to forty? Or even thirty-five? How do you go on after that? I try to live my life fully right this instant. Every instant” (99).

The book addresses the difficulties of deciding whether or not one should be genetically tested. Mary eventually decides to be tested for the sake of her loved ones, but she doesn’t want to know her own results. For Mary, the downside of a positive test is too great. She copes with the possibility of having HD by living each day to the fullest. This contrasts with her brother’s decision to know his results. For Freddie, “knowledge is power” (272). Look here for more information on the genetic testing (http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/genetic-testing/), and specifically deciding not to be tested (http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/genetic-testing/#what-if-i-decide-not-to-be-tested).

Consent
“When she was about ten we – my husband and I- we asked the hospital to run the tests” (150).

An additional concern with genetic testing is consent. Mary’s mom reveals that although Mary doesn’t know her status, she and her husband secretly had her screened as a child. Her mom references the difficulties in getting the test by saying, “We had to move heaven and earth to get it done”(150). Genetic testing guidelines stress that the decision to undergo genetic testing should only be made if an individual can give informed consent. The HDSA Genetic Testing Guidelines stress that minors should not be tested unless there is a medically compelling reason to do so. The book deviates from what would be considered normal testing procedures. For further information on genetic testing, please read more here (http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/genetic-testing/).

Family Planning
“I have already arranged things so I can’t have children” (98).

The story mainly centers on the long-term consequences of having HD. For Mary, the long-term consequences motivate her hesitation to begin a serious relationship and her choice not to have children. If one parent has HD, there is a 50% chance of passing on the disease each time they conceive. The decision to have children is deeply personal for HD patients. However, Mary’s decision glosses over the fact that there are many methods available to help someone ensure their child does not inherit Huntington’s. In addition to adoption and sperm donation, pre-implantation genetic diagnosis also exists, for which a couple undergoes in-vitro fertilization for an embryo that has been screened for genetic diseases. A fetus can also be screened prenatally for HD and other genetic disorders. This is a morally complex decision that the book only briefly touches on. See this article for more information on family planning. (http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/family-planning/).

Suicide
I’m not going to run and jump off a bridge, but in time, when it’s right for both of us, I’ll leave” (240).

Suicide ideation is one of the most pressing and difficult issues facing the HD community. Mary decides to take her life in this novel. She is candid with Jonathan about her decision to commit suicide and expects his support. She says, “You will let me go and that’s what needs to happen now”(320). The book depicts a heartbreaking choice, made seemingly easy by the unwavering support of loved ones. The reality is likely far more complicated, but it is an important issue to address.

Conclusion:

Eternal on the Water is an idealistic portrayal of one couple’s struggle with HD. The touching story centers on their love for nature, always returning back to the Allagash, where Mary is ultimately ‘eternal on the water.’ Despite this romantic perspective, the book examines real challenges both HD patients and their loved ones face. While some of the details on the topic of consent required for genetic testing and on the seemingly inevitable decision not to have children are debatable, the book is a heartbreaking look at the impacts of HD. It is a celebration of love and life, no matter how fleeting.

Resources:

http://hdsa.org/wp-content/uploads/2015/03/GeneticTesting-for-HD.pdf

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.