The Backlit Menace

I am without suspicion when it comes to modern western medicine. This is, of course, ridiculous, given how fallible medicine is and how generally skeptical I am.  I grew up in not one but two families of doctors and was indoctrinated among the faithful at a young age. And yet, I’m not above inventing my own, completely unscientific yet highly medical sounding theories about health and wellness.

For example, my father spent almost a decade slowly dying from what his doctors called, “unspecified dementia.” It was likely Alzheimer’s Disease but it began in his 40s, which made him unusual and,  the only absolute sign of Alzheimer’s is a lesion on the brain that you can’t see until an autopsy, so they were mostly making an educated guess.

While my dad was suffering I explained the situation to myself this way: my father had been a uniquely dexterous man. He was not ambidextrous. But differently able with each hand. He ate and wrote with his left hand, played competitive squash and tennis with his right hand, and, as an eye surgeon, operated on the right eye with the right hand and the left eye with the left hand. Clearly, his wiring was not only an aberration but so improbable as to be dangerous. His brain was a ticking time bomb. Since my brother, sister and I are right handed, our brains must not resemble his and thus, when he dies, they will cut open his head and see something they never saw before, name this disease after him, and claim every subsequent case as rare.

When my father died at 58 his autopsy revealed the Alzheimer’s lesion. And because he was so young when his symptoms first set in, they called his condition “early Onset Alzheimer’s Disease.” This was over 20 years ago. And while the facts should convince me to give up both my blind faith in medicine and my unfounded, cockamamie theories, I just can’t. Why? Milo.

I’m a writer. If an engaging narrative doesn’t present itself for each situation in my life I will gladly invent one. This isn’t conscious, it’s just what happens. So my Bipolar son is ironically a most excellent muse. Nearly every conversation with Milo requires the imposition of an external narrative in order for it to make sense. I have a story for everything he does and says. I have been known to force these stories on unwitting teachers and school administrators. And on you dear readers.

So, on New Year’s Day we had two other families over for brunch. They were meeting each other for the first time. They are friends we don’t get to see often but truly admire and enjoy spending time with. The kids were off doing whatever kids do, probably playing a video game, and one of the moms, the one who just transferred her late elementary school kids to a Waldorf School asked, “What’s your rule for screens?” The other mom, a law professor married to a law professor answered, “No screens at all during the week. . .no more than X amount of time on screens on the weekends.”

The first mom thought about it and said she had gotten rid of screens altogether and that it was the best thing she had ever done. There was a pause and my husband said, “Our rule for Milo is no more than 3 screens at a time.”  Everyone laughed. But, um, that IS the rule.

Milo can sit in front of the computer with an iPhone and a tablet on his lap, he’ll be playing a different game on each and he’ll be winning all three. My theory is that special needs kids have special relationships to everything, including screens. Milo has no limits on screens. Somedays he watches forEVER and some days he never turns them on and gets wrapped up in legos or making a comic book or reading through the Harry Potter series without stopping.

The days that he watches a lot, are days, I think, that require some amount of isolation from his speedy, speeding brain and oppressive, constant assessment of himself. It’s a way of getting lost. It  looks like mediation. When Milo is focused on a screen his whole body relaxes, his face loses its defensive expression, he stops his incessant chewing and his infernal prattle. He appears to be in a zone.

Science tells me that the rays might be scrambling his brain, but hell, his brain could use a good scrambling. I know how cavalier I sound, but I believe that Milo’s brain is also singular, that whatever happens at any given moment is unlike what’s happening in any other brain at any time ever. His wiring, like my father’s wiring, is singular and all his own.

I would prefer to live without the flickering light of TV, or the ringing bells and whistles of video games. I would prefer that Milo romp through the woods, build forts and Lego creations and draw pictures and read books and bake cookies with me all of the time. But that’s my story, not his. Milo’s story is backlit and blue.


One thought on “The Backlit Menace

  1. I’ve never had any restrictions for my boys, and they don’t appear fixated on their “screens.” If they are, I make them stop, but I’m convinced that’s more about me than them. The self-consciousness of limiting things sort of irritates me — it’s what “normal” families (say, upper middle class) have to agonize over. Perhaps if my oldest daughter wasn’t severely disabled, I’d have a different perspective with my younger “typical” ones. But for me, the loss of control, the realization that we never REALLY have control — well, things like screen time just don’t concern me.

    All my meandering aside, though, and the bottom line is that I love the way YOUR brain works and how you are able to articulate this stuff and shed light even when my experiences are distinctly different.

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