With the diamond ring just a few feet away, concealed only by the box, in which it came, it sounded as if my boyfriend at the time was discussing the plumbing of a house: “Ariella, I’ve been thinking. We can’t very well get engaged before I get tested for SMA (Spinal Muscular Atrophy), because if I’m positive, we obviously can’t get married, as I don’t want to conceive through IVF. And, if I’m negative, then I should have my parents get tested to ensure that it isn’t a false negative. And, even then, there’s a chance that there could be a genetic mutation, so I would want you to do pre-natal testing once you’re pregnant to confirm that the fetus does not have it. And, if, God forbid, it is positive, then we would have to discuss termination.”
The pain grew within me as I listened to his dissertation on my genetic defect, while ironically enough, ignoring any mention of the genetic disease, which ran in his family. As he spoke, I was struck by the contrast between his statements and the statement of Elkanah, the father of the Prophet Shmuel, in comforting his then barren wife, Hannah. “Why is your heart grieved? Am I not better to you than ten sons?” It seems to me that Elkanah and Hannah, Avraham and Sara, Ytzhack and Rivka, and Yakov and Rachel, placed marriage on a higher plane than we do today.
While my relationship with this man ended for reasons other than my genetic defectiveness, the conversation continued to burn in my mind, even after the fire of our romance extinguished. His words taught me more about marriage than about genetics. I refuse to believe that we, who suffered at the hands of those who wanted to create a master race, would view genetic testing as a means to keep less then perfect babies from being born. His opinion made it clear that he believed it would be better if people with disabilities, people such as Beethoven, FDR and Stephen Hawkins, did not come into the world and that parents of the genetically disabled should never be married, for fear of producing a defective child. When did marriage transform from the loving unity of two individuals, who wish to share their lives with each other, to an institution, established entirely to guarantee the birth of genetically pure offspring?
Before becoming religious, dating and relationships were about intimacy, companionship, romance and falling in love. While the ultimate goal of every relationship was marriage, the technicalities of conceiving were never topics of conversation. However, since becoming a resident member of “the swamp” of Katamon, Jerusalem, dating has become less about love, physical attraction, compatibility and chemistry and more about age, fertility, yichus and genetics.
Certainly, the battle between our hearts and our intellect, love and convenience, is one as old as the Jewish people. My favorite love story from the Tanakh is that of Ya’akov and Rachel. Ya’akov married Rachel 14 years after he fell in love with her, placing zero importance upon her age. Once they were married and Rachel proved to be barren, Ya’akov loved her no less. He didn’t leave her, reject her or spend less time with her. To be sure, Ya’akov loved Rachel the most. He favored her and spent more nights in her tent than in any other. Ya’akov chose his heart over his intellect and was rewarded with his true love and, ultimately, with the miracle of Yosef, his pride, his joy, his and Rachel’s son.
The topic of genetic testing arises with some frequency in my life, especially in the context of dating. However, I am not the exception. It is the concern of many Ashkenazi Jews, seeking to avoid the emotional pangs of bringing a child into the world with Tay Sachs, cystic fibrosis and the like. No one, including myself, wants his child to suffer a cruel and painful disease or debilitating impairment. Indeed, I do not want any of my future children to endure the hardships, discrimination, and heartache I have experienced as a result of my disability. Thus, if, G-d forbid, my mate, my beshert, fell within the two percent of the population, which carries SMA, I would choose to conceive through IVF. I would not, however, choose to toss him aside for the genetically pure.
My future husband is far better to me than ten sons. Indeed, a man’s genetic make-up would never be the deciding factor for me in choosing a husband. For I fear that, maybe, if it did, I would lose the opportunity to marry my Ya’akov, to have my own Yosef, or to mother the next Beethoven.