Sunday, March 30, 2008

My Brother’s Keeper

(Adapted from the Stamford Advocate, June 28, 1991)

My brother Mark, who is mentally retarded, is sixteen months my junior. We shared the same room while growing up. People often mistook us for twins, though I never could see such a resemblance, though I was proud to be identified with him. Our family albums are filled with photos of me holding his hand on roller coasters and kissing him at birthday parties. As a teenager, while most of my friends spent their Friday nights hanging out in someone's basement or at the movies, I often gave Mark a bath.

Life in my home consisted of a bizarre series of recurring vignettes -- bizarre to most, normal for me. While my mother bemoaned the fact that we could entertain so rarely, I naively clung to the presumption that our guests would not be fazed by Mark's spontaneous calls of "kan--meetchee-molin!!" and "A-weekee-wee!!" the occasional flailing of his arms in an unfathomable rage, and his insatiable appetite. Perhaps they would think it cute.

He wasn't toilet trained until late adolescence. Until then my parents, sister and I took turns wiping him; not a pleasant task, but one that older siblings of toddlers face every day, I figured. A minor inconvenience. For my parents, Mark's condition was a tragedy; for me, a given.

I believed the old saw that having a retarded sibling was really a blessing in disguise, a gift that would make me a better person. Therefore Mark's purpose on earth was to provide me with cheap sensitivity training.

Until several years ago, we never knew whether his disability resulted from human error or divine decree. The endless search for a definitive cause was for my parents an obsession, for me a curiosity. But in the mid ‘80s we finally got the conclusive answer, one that transformed me from observer to survivor.

My brother has Fragile X syndrome, a genetic disorder first discovered in 1970 and now recognized as the second leading cause of mental retardation among newborns. Fragile X results from a weakness in the genetic structure of the X chromosome. Females, who are born with two Xs, one from each parent, are often less affected by the syndrome, because their normal X shields them from the fragile one. Most males born with the defective X are not so lucky.

Genetic screening now can detect Fragile X with astounding accuracy. I was tested before I was married. I'm clean. Completely, utterly clean. Not even my great grandchild could inherit the defect from me. It was a fifty-fifty shot, a flip of the coin. I won.

Of my mother's two X chromosomes, I got the good one.

Mark got the bad one.

If my mother had known then what we know now, she would likely not have had Mark.

Or me.

Mark spends his days folding bags in a sheltered workshop, eagerly awaiting his reward for a job well done: a can of Coke at 1:30. I earn more in a week then he'll earn all year. I vacation in Paris and eat at all the best restaurants. He chows down at the local Burger King. I graduated from an Ivy League college and earned three advanced degrees. With gentle encouragement, Mark can count to 20. I got married. I drive a car, I have children. I chart my future. He's happy -- unbelievably content -- with a candy bar and a few old '45s to play on his run-down record player.

In nature's demonic process of selection, Mark was the victim, while I was condemned, in my good fortune, to live out my life knowing it.

Mark has become my mirror image, the X-factor defining who I am and what I could easily have become. We are two sides of the same coin. We share the accident of birth.

Mark's rage and frustration live within me. Whenever I forget a meeting or misplace my keys, I grumble heavenward for being hampered with such mundane limitations, sometimes voicing sentiments strikingly similar to the ones Mark used to mutter at the dinner table. And when I see Mark beaming proudly, after asking Mom, in a complete and utterly civilized sentence, to pass the chicken, "pleeze," my frustration quickly melts into his exultation.

We sleep in separate bedrooms now, 180 miles apart. I wander the face of civilization seeking meaning and imparting my uncertainty to others. Although he wipes himself now, Mark stayed in his Garden, shielded from the terrible knowledge I now possess, about me, about him, about us all. As my children grow, their fragility exposed, no matter how far I stray, my brother's DNA screams at me from the bowels of the earth.

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