Column: I dream of genomes with the light brown hair
When I was about 12, I found out that my parents were denied any kind of insurance for me because I am blind in one eye. I was born with a congenital cataract in my right eye and, apparently, the insurance company deemed me too great a risk.
I can see the headlines now: “TYKE TERRORIZES TOWN!!!! One-eyed baby overpowers parents, nabs Dad’s car keys and joyrides through streets of central Ohio. Parents shocked, toothless suspect has ‘no comment.'”
It’s this early brush with discrimination which has piqued my interest in genomes and genes – the things inside us which look like curly fries and are defined as “the chemical code needed to build a human being.”
The recent release of the Human Genome Project has whipped up an ethical debate about what to do with all this information. Some see it as the literal cure to all our ills. Others believe if the technology falls into the wrong hands – and it will – medicine, health care and insurance coverage will enter a new realm that is hard to imagine.
I can argue both sides of the question. Had some scientific soothsayer been able to predict that I would be born with this birth defect, perhaps it could have been cured “in utero.” On the flip side, if science were as advanced as it is today, perhaps someone might have talked or regulated my parents out of having me and I wouldn’t be sitting here at 7:41 a.m. in my pajamas at my home computer.
I don’t spend too much time thinking about what it would be like to see out of both eyes. Instinctively, I have done what members of my species do to survive, I adapted.
I learned to carry the baby on the left hip so I could see her. If you and I are going to walk and talk at the same time, I am on your right or I will bump right into you. I’m a terrible bowler and I have no depth perception, whatever that is. If you take me to a 3-D movie, you are wasting your money. If you want to sneak up on me, come at me from my right.
For me, having vision in only one eye is no big deal. Had I been sighted in both eyes, and suddenly lost the vision in my right eye, it would be a different story. But I don’t know what I am missing.
The dilemma, of course, is what happens to me if my left eye starts to deteriorate. If I’d had my genes “done,” perhaps I would know that now and could prepare. For the time being, I avoid bar fights and duck when flying objects head my direction.
All this talk of genes and “what ifs” comes too late for my friend, Carolyn. The so-called scientific breakthrough comes about on the first anniversary of her death. She was just a year older than I and suffered from cancer for 20 years, a legacy she inherited from her mother. I can only speak to her pain as a friend and tell you how much I learned about living from witnessing her valiant battle. I am a better person for having known her.
Carolyn never gave up. For two, long decades she allowed herself to be subjected to every treatment, test and medication available on the East Coast and in England.
Should she have not been born to spare the pain and suffering she experienced before she finally died? I am not qualified to answer that question, and frankly, it scares me to think there are people out there who believe they are.
n Sheila Gardner is editor of The Record-Courier.