I never knew her. I’m named after her–Deborah–but we never met; never shared in the bond of aunt and niece. We never could. She died before I was born of a disease called Cystic Fibrosis– a genetic disease which affects the lungs, pancreas, liver and kidneys, amongst other organs. It creates an excess amount of sputum in the lungs and makes it very difficult to breathe. People with CF (mostly of Northern European descent) take daily antibiotics to support their compromised immune systems, some receive lung transplants, but all live within limits. There is no cure for CF and the average life expectancy is between 35-40 years old.
Debbie, having suffered from CF left our family with quiet memories of a young adult that I would fictionalize into adulthood. She is the reason why I praise, avoid and fear genetic testing.
Debbie was 30-years-old when she died; engaged to her longtime boyfriend; awaiting the birth of my older sister. It was February of 1992. She was young.
My sister was born the following August, not knowing that she had been present for Debbie’s last moments, if only in-utero. I, however, never stepped so close as to feel her presence, although I carry it with me every day in my name.
This tiny memory that I keep of my deceased relative, my father’s sister, means something more. It means that I will never know a part of my father that existed before she died. It means that my grandmother has experienced loss that is unfathomable to many people. It means that I have the awareness that a deadly disease runs through my family’s genes. It means that I can envision losing a child when I don’t even have one yet.
My first year at Stern College, my roommate–planning to find a spouse through the shidduch (match-making) system–put her too-heavy winter coat on and asked me if I would be joining her in Koch Auditorium for a free genetic testing event. With an adamant “No,” she looked at me quizzically, a bit offended and left the room.
When she returned from having her blood drawn, our conversation recommenced and she asked me why I had protested to learning the possible fate of my children. I explained to her that although I will take advantage of this medical advancement later in life, as of now I have no desire to sit with the worry that I may carry a deadly gene.
Genetic testing, however accurate it may be, provides young adults with information that need not concern them prior to marriage and procreation. This is not to say that genetic testing should be made completely unavailable to unmarried adults, as I know that people such as my former roommate found this resource to be helpful in her search for a spouse. For people pursuing early marriage and early parenting, I encourage that this step be taken in preparation for beginning a family.
For myself, however, I intend to find the ‘right’ person before I concern myself with the potential diseases that could be produced. I have lived with the knowledge that I potentially carry the CF gene, but I do not want that to be my ice-breaking fact when I meet my future spouse. For me, the exploration I want to do is more about the partner than the negative potential we have together. Having lived with this fear, I have decided to numb myself of the uncertainty until it is absolutely relevant.
Then again, because of this knowledge I have long admired adoption as a method of parenthood and have researched it as a serious option. Perhaps it is dishonest to blind myself of my own reality rather than confronting it, however, I choose to approach this issue with caution and sensitivity. I do encourage genetic testing, but I also encourage taking the time one needs before even discussing the “best option.” If I do not carry the gene, then I will simply have more options for methods of parenthood. If I do carry the gene, I will face this challenge alongside the support of my partner.