Our Lives

My sister is happy to share her wisdom

January 19, 2013 

Todd Jones.


You should get to know Janet.

My sister, youngest of six children, is one of a kind. Through the merciless twists of genetic fate, she was endowed with an extra chromosome and the accumulating challenges that accompany it. Despite the fact that I’ve known her very well for 46 years, she continues to amaze me as well as others she encounters.

Her mind is fascinating, not in its intellectual limits, but in what she understands and how she articulates it. To wit, once, in a period of unbridled creativity, one of her many self-assigned long treatises (for lack of a better term) was titled “The New Technique of Ways of Challenging Greater than Great Changes.” From there, the piece swerved through provocative culture references spanning Jesus, Walt Disney and Adolph Hitler. While she probably never understood all the nuances of her writing, she sure knows how to push buttons.

She has developed certain phrases and gestures that I find inspired. Once, when told something she didn’t want to hear, she cupped two fingers into an ear and scooped out the offending words, shaking her hand off to let the noxious notions fall to the floor, as though it were some disgusting foreign ooze. And she has a unique way of excitedly rubbing her hands together while chuckling in moments of self-congratulation. My brother and I have incorporated these and other gestures into our family lexicon.

She helps out occasionally on my music, where I put together a backing instrumental track and let her extemporaneously freestyle. Her stream of consciousness meets her complete lack of inhibition for an alluring mix of references, word play and universal observations that amaze and provoke. “And I’m just going to get you like this, and don’t you see it like this? And seal it like this, through the lips like this. Under the glove, I mean just the real stuff!” I’ve spent hours pondering lines like this, wondering about their potential meaning.

For years, she stubbornly believed she had a connection with Christopher Burke, the actor with Down Syndrome who starred in the ’80s sitcom “Life Goes On.” Through some four degrees of separation arrangements, she’d managed to acquire a signed photo of Burke, furthering her insistence of their inevitable, intertwined destiny. A few years ago, I learned that Burke was to give a performance at my youngest daughter’s school. The fortunes were aligning. I was granted permission to have Janet attend with me (armed with a metaphoric tranquilizer dart in case she over-stepped her bounds). At the end of the show, the parent who’d organized it asked Janet if she’d like to have lunch with Christopher. “Of course,” she said, giving me a dagger glance for ever doubting this would occur. After lunch, the two posed for some pictures together, memories of their date and Janet’s triumph over the doubts of her family.

The future for Janet is uncertain. The state of North Carolina, like many others, is constantly tweaking mental health policies, under lofty euphemisms, but ultimately in search of money savings and some presumed vestiges of accountability.

Our mom, 87, is tirelessly vigilant in poring over her Social Security funds, prescription meds and the relentlessly shifting policies of the state’s mental health care to ensure she gets the best care possible.

Yet Janet is one of the lucky ones. She has a large family with means, a trust for her care, and should the institutions designed to support her crumble entirely, Janet has options her peers don’t have. I’m working on a crowd-sourced CD and video project featuring Janet, the proceeds of which will go to charitable organizations for special needs adults and perhaps to the trust fund we hope will help us provide for her after our mom is gone.

Until then, we will all use the genius ear-wipe move and wait for her new gem of wisdom at the next family gathering.

And do yourself a favor, if you get the chance, introduce yourself to her. You’ll be glad you did.

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