I have always been fascinated by stories, and in particular the very personal stories that you get from people while you are sitting on the bus or waiting in a doctor’s office or attending a funeral, the kinds of places where there is just enough time to create a moment of trust and the promise of anonymity. We all have stories that we carry around with us, that we willingly share, sometimes need to share, when there is a welcoming ear. Such are the stories in The Story Within, slices of the deeply personal shared with anyone willing to listen.

As someone who helps others draw out the stories that shape their identities, I was at once captivated by this collection of essays. The focus is on the way in which our biology, our genetics, determines how we see ourselves and how others see us–and thus determine our individual identity.  These stories are written by men and women, young and old, from diverse backgrounds. What they share is a theme–how an incurable genetic disorder has influenced the life of each author.

The editor, Amy Boesky, a writer and professor of literature, has a keen sense of power of narrative. She has fashioned together a collection of stories that bring out the complexities of living with a genetic disorder. These stories bring out the humanity in the authors, and in turn the humanity in the readers. Each story is accessible and offers a unique insight into how the information contained in DNA can profoundly direct the lives of many while remaining invisible to most. These stories reinforce the knowledge that our sense of self is the result of many factors beyond our control.

The book is divided along three overarching themes. The first section of the book contains stories about identity and how it is shaped by knowledge of a genetic disease or the possibility of one. In the first story, “Undiagnosed,” Kelly Cupo tells of her mother’s battle with Huntington’s Disease and her own conflict over whether or not to be tested while facing a 50-50 chance of having it. Not knowing places her in a state of conflict, wanting to hope and dream and plan like many young people while at the same time worrying that the life she planned may never materialize.

Cupo’s chapter highlights the looming power of uncertainty over the major decisions in her life.  It also highlights the fear that knowing can bring. Cupo makes the reader feel what it is like having a 50-50 chance at being told (or not) how long you will live and how you will die, an equal pull to know and to not know, and an equal chance of feeling the relief of a negative test result or the despair of a positive one.

This first chapter also starts us off on strong footing for understanding the stories that follow. She writes,

Genetics isn’t about deserving. So those people can stop feeling like they are questioning “God” in the right way, saying, “He works in mysterious ways,” when in fact we’re staring at a way he works…And please, whatever you do, don’t give me the “sometimes bad things happen to good people” line. Because we’re not “good people.” We’re just people. (31)

Building on Cupo’s description of a life of uncertainty is Charlie Pierce’s chapter, “Driving North.” Pierce’s father died of Alzheimer’s, and the disease is prevalent in his family. Knowing that he has a chance of also developing it, with increasing age, Pierce begins to reflect on the power of memory in shaping personal identity. He also finds himself ever vigilant for signs that he, too, is developing Alzheimer’s. It has become a shadow in his life, with each small lapse in memory a cause for concern.

          Knowing that one has the risk of a life-changing illness, but not knowing the diagnosis with certainty means living a life always thinking about and preparing for the worst “what if” scenario. Whether or not that scenario materializes, its mere possibility changes the way a person thinks about life, interacts with others, and plans for a future. The second section of the book addresses what can happen when the diagnosis has been made, and in particular when the only interventions are those that can minimize suffering.

          This section emphasizes the role of greater education and information sharing to help make communities more understanding, and better able to deal with, the unique struggles presented by genetic disorders. In particular in this section, the story of Patrick Tracey tackles the mental health issues. Tracey’s family has a history of schizophrenia, and his research led him to his family’s roots in Ireland. There he discovered that hereditary schizophrenia was not a topic that could be talked about openly (pp. 141-142), even moreso than in the United States. Being excluded from access to information that could help him understand his identity, Tracey reminds us of the power of sharing a personal narrative–and the devastating effects of not being able to. Our need to connect to others, and in particular to connect to others like us, provides a sense of place.

          The final section of the book offers different perspectives on interventions, and it confronts the issue of having a genetic disorder, or being a “carrier”, and giving birth. Is it ethical to take such a risk with a life that is not your own? If genetic testing shows the fetus to have a genetic disorder, what is the ethical choice? Is any life worth living? And if we make it socially acceptable to have only healthy babies, do we risk losing the perspective of those who are different? “Lettuce and Shoes” (Christine Kehl O’Hagen) best exemplifies life under constant medical intervention. O’Hagen describes the life and death of her son Jamie from Duschenne muscular dystrophy, a disease that also claimed two of her uncles, her younger brother, and one of her nephews, and that is slowly claiming her second nephew. She candidly portrays the hardships–the constant monitoring of equipment, being awakened by alarms when a machine is malfunctioning, being afraid of blackouts, praying for one more breath, one more moment of life for her son. (225)

          All personal narratives serve as reminders that we are all individuals, the product of our genetics and the paths in life we have chosen. For those who have traveled a similar path and who have faced genetic illnesses, these stories can be a source of comfort. These stories can also help inform and educate and generate much needed dialogue about health and body norms. The narratives in The Story Within are a reminder that every life has value.

© 2014 Dena Hurst

Dena Hurst, Ph.D., Instructor/Researcher, Florida State University, Associate Editor of Journal of Philosophical Practice, Certified Philosophical Counselor