When I received Masha Gessen's
Blood Matters, I was prepared not to like it because of the subject - genetics, hereditary and disease. After all, you expect books about these subjects to be filled with medical jargon and seemingly void of any warmth. I was wrong. Although Gessen occasionally wanders off topic into areas that seemed out of context with the book, (passages I quickly skipped) this book is fascinating reading that starts out with Gessen's narrative of her
mother dying of breast/liver cancer, getting tested 11 years later and discovering that she had inherited a mutated gene --BRCA1 - that gives her a higher risk of breast and ovarian cancer and other diseases.
(read My Mother's Fatal Flaw to understand more).
The gene can come from one or both parents, who may not even develop any cancers. A child whose parent has the mutation has a 50% chance of inheriting the gene. Gessen goes further than her own type of mutated gene that affects Ashkenazi Jews, and talks about other defective genes that could result in colon, stomach and other cancers. There is a section about a family affected with the Huntington gene.
With her positve test, she became part of an un-recognized group, not quite a secret society...but one who lived by a different set of rules from the rest of the world. People were aware of information contained in their genetics "and reshaped their bodies - and their fates - accordingly."
After a positive BRCA1 mutation result, facing their own mortality head-on, most women wrangle with the possibility of having their breast and ovaries removed (some would say they are the lucky ones, at least they have options, unlike with Huntington's Disease, once you test positive, there is no way of preventing it...)
Gessen was left with the decision to live her life and hope not to get cancer or to reshape her body and try to take some control over her life. She wrestled with sacrificing the breasts that her daughter found comfort in or leaving her life to fate. At one point in the book, she says that she could deal with a 40% chance of ovarian cancer but couldn't deal with a 87% chance of breast cancer.
There's a poignant moment in which Gessen's cousin Natasha, who also tested positive and faced the same decision, says, "If I cut of part of me that may develop cancer; the cancer may come through in a different organ. I have to confront it with my own spiritual force."
Gessen could understand that but says, "My body had turned against me. All I could do was declare war on it."
Although not diagnosed with any cancer, seven months after learning of her defective gene, Gessen had an oophorectomy (surgical removal of one or both ovaries), hysterectomy and a mastectomy in order to prevent cancer. I couldn't imagine being broadsided with that sort of life and death situation. I am not sure what I would do. That brings up an unsettling question, what if you could learn of your genotype (Gessen sought out to be tested), would you want to know, and if faced with Gessen's decision for pre-emptive surgery, what would you do? Or is ignorance bliss?
After her own experience, she delved into the world of genetics, doctors, biochemists, medical studies and clinical trials to find out what she could about genetics and disease, and what she learns is fascinating and sometimes scary reading. Although gentics can be the key to discovering our history, our ancestors and our blood line, genetics can be the looking glass into the future where we learn how we may die...
She captures stories from people with this knowledge - families who lose three, four, and even five siblings/family members to cancer. One man Larry, who lost 3 of his 4 siblings to stomach cancer, feared stomach cancer and had his stomach, an inch of his intestine, and an inch of his colon removed. He and his mother carried the gene. A woman named Mary Lou was part of a generation of 5 sisters, four of whom were dead of cancers. She developed ovarian cancer and became the key to discovering the cause of the families cancer. It's stories like these that gives
Blood Matters it's humanity and prevents it from being too clinical. Gessen tells her own story without saccharin sentiment but with a matter-of-factness that's real and in places even humorous.
Gessen is a journalist who has written for Slate, Seed, the New Republic and the New York Times. She says she wrote
Blood Matters, not only because of her own experience, but for "the frontier women cutting off their breasts to spite their genes." Her writing is that eloquent.
Whatever her reasons for writing, we've been given a gift as she's presented us with a glimpe of what can go wrong with our very complex genetic makeup of codes and wires and how we deal with our own mortality, but's she also given us a deeper understanding of ourselves and what connects us to one another.
Related Articles:
Our Canoe Trip
Reflection of a Woman
Blood Matters: My Mother's Fatal Flaw
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