March 24, 2024
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Uncertain Tomorrows: Life In The Shadow Of Genetic Illness by Miriam Sachs

Losing a young child is a family tragedy. Losing three would seem unbearable. In Uncertain Tomorrows, author Miriam Sachs writes about how she lived through the death of three siblings from Fanconia Anemia (FA), a genetic disease; one died when the author was just 6 years old, the other two died months apart, when she was a high school student. Uncertain Tomorrows is both the author’s narrative of helplessly watching beloved siblings succumb to disease and her coming-of-age story in which she acknowledges self-involved hurts, angers and resentments, and then slowly transcends them.

The author returns to the events of her adolescence and meticulously recreates them. This is a true story, so it’s unclear if the dialogue is from diaries or memories, and it sometimes sounds stilted. But she brings the reader along on her journey in an engaging way that makes up for lapses in chronology or eloquence. I winced at her teen-age selfishness, while marveling at her honesty.

Early in the book, 10-year-old Mindy passes away, and Miriam volunteers to make phone calls to her parents’ friends. One woman responds to the call by saying, “No, no. Please don’t say it.” Miriam thinks to herself, “If you can’t handle Mindy dying, what am I supposed to do?” almost denying anyone else the right to be sad lest it worsen her grief. And she is appalled that her sick 7-year-old sister Rivky is going to start school in the self-contained special education class: “Yes, she needed help, but now everyone was going to know about it.” Oh the horror, for 17-year-old Miriam!

But I felt proud of her, when compassion for others began to share space with her teenage narcissism. Miriam visits Rivky in the hospital and tells her father to go home, that she will stay with her sister. Assuring him that she can handle it, she writes, “It was hard to look into my father’s eyes and think of how many days and nights he had spent in hospitals with his children.” And at another point she thinks, “I couldn’t tell my parents about how deeply miserable life felt now. How could I do it to them? They had enough to deal with.”

She seamlessly chronicles visits to Rivky in the hospital with tales of trying to live a normal teenage life. At school, Miriam tries to take responsibility for a bake sale, sometimes snapping under her competing pressures. I was distracted by the excessive detail in the scenes about this activity, although young adult readers might appreciate the description of high school life with its angst and struggles. An endearing subplot revolves around Miriam being thrown together with an unpopular girl whom she befriends and comes to value.

As Rivky’s condition deteriorates, Miriam begins to take more responsibility with increasing sensitivity towards friends and family. Heading home after school one day, realizing that her healthy, younger sister Avigail would be there with friends practicing for a chagigah, she laments that she would almost prefer not to be going home. But then she writes, “Here is my chance to be the nice person I really wanted to be.”

One night, she wanted to get some ices before going to bed and then suddenly thought about her mother, who would soon be coming home from a long day at the hospital and eating alone. She puts the ices back in the freezer and prepares a plate of food for her mother to be warmed in the microwave. “What did I do to deserve this special treatment?” her mother asks on her return, as she sees what her daughter has done. Miriam doesn’t answer. “I turned around slowly, but instead of blinking the tears away, I let my mother enfold me in her arms.” That is being a nice person.

Sachs wrote her story to thank her parents for giving her the most loving, stable childhood possible under the circumstances and for teaching her that you can move on despite tragedy. She also wanted to address what she calls the lack of literature in the frum world about genetic disease. Here’s where she opens Pandora’s Box a crack, and it deserves some attention. She says in the prologue that this dearth of information existed in the years before Dor Yeshorim, and writes in the afterward that “An FA carrier test was developed more than twenty years ago, and Dor Yeshorim has been testing for FA for many years.” She does not explicitly state what Dor Yeshorim is or what it does and why.

Dor Yeshorim was founded in 1983 by Rabbi Yosef Ekstein to conduct confidential genetic testing, mostly for Orthodox teenagers. Each individual tested receives a coded ID number. They can call with their number when considering a shidduch to prevent the possibility of being part of a couple in which both are carriers of the same genetic disease. With two carriers, the odds of giving birth to a baby with the disease rises, but it is not inevitable. In the author’s family, three children were sick and three were healthy. The heartbreak of genetics is that a baby born with one of these illnesses cannot be cured. The only course of action is preventing a pregnancy or doing whatever is necessary to raise sick children, as Miriam’s parents did. A recent article in Hamodia says Dor Yeshorim has “spared more than 3,600 families the agony of having children with genetically carried diseases.”

Sachs introduces her story by saying she prayed to Hashem before her eldest child’s birth, that the baby would be healthy. She does not say whether she or her chassan went to Dor Yeshorim before they were married.

Uncertain Tomorrows is a sad but engaging book which will appeal to young adults wanting to sympathize with the author’s pain, and readers of any age who want to be drawn into a story about getting to know yourself and rising to the occasion, even when you might prefer to escape. But since Sachs mentions Dor Yeshorim twice, I would have liked her to more openly discuss what genetic testing is and the consequences of having or not having it done.

Reviewed by Bracha Schwartz

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