I will be happy to see the tail end of March, as this month has brought one death after another within the six degrees of separation that delineate my world. Just in the past ten days, the grim reaper has claimed my father's cousin (leukemia), a colleague's brother (tragic accident), a friend's mother (MS), and my grandfather's sister (age, a broken hip, and assorted other ailments). Enough already.
Although my great aunt was old and her death expected, perhaps even merciful, her absence raises a serious question: What will her son do now? Or, more accurately, what will her son do after his father (who must be close to 90 years old now) also dies? Because my great aunt's son (my mother's cousin, and my first cousin once removed) has Usher Syndrome.
In fact, he's the only other relative whom we know has Usher. Through a research study in which my family participated, the gene that causes Usher in Ashkenazi Jewish families has been identified, and we know it must come from both parents to produce a child with the disease. But we know of no forbear on my father's side who landed this lucky genetic prize, and only this cousin, G., on my mother's.
I hardly know G., but from the time I was diagnosed with Usher over 20 years ago, he's served as a gut check for me -- sort of an anti-lodestar -- whenever I've slipped into self-pity. G. is older than my parents, perhaps in his mid-60s, but still lives in his parents' apartment. To my knowledge, he doesn't work, and I don't even know whether he went to college. At family events he keeps to himself or clings to his parents' side, and he appears to have no ability to function in a social setting.
My mother thinks his hearing is better than mine, though his vision may be worse. But whether he can see or hear more or less than I, he is far more disabled. G. was brought up to be handicapped. Perhaps his parents needed him to depend upon them, in that clinging, desperate way that parents of only children sometimes do. Maybe they were too afraid of what evils the world might inflict upon a young man with clouded vision and muffled hearing. G., after all, grew up before technology opened myriad new doors for people with all sorts of impairments. Or maybe the fear was his, and his parents were unwilling or unable to push him out of the nest so he could learn to fly on his own.
The family grapevine suggests that G.'s parents have made some "arrangement" for his care after his father's death, whenever that may be. I suppose he will live the remainder of his days in some type of institutional or group home. There's a part of me that hopes these new surroundings will force (or at least encourage) him to discover his abilities and to achieve some semblance of an independent life, though I have no reason to believe he desires such an existence.
But whenever I think about G., I feel an incredible rush of gratitude towards my parents, who raised me to know that neither hearing impairment nor vision loss could prevent me from making my own way in the world. I wonder, sometimes, who and what and how and where I would be, had I not hit the jackpot in the parental lottery. While I might not have wound up with the same genetic hand, I would surely have been dealt some kind of bupkes, as we all are. But with another set of parents, I might have grown up to see my limitations as brick walls in my path, instead of rickety hurdles that I can leap over with a little training and perseverance (or at least knock down trying).