Sunday, January 9, 2011

Part 35 of "Miracle Boy"

Thanks to all of you who responded to my request last week for examples of offensive, exploitative docudrama-slash-Reality TV portrayals of people with disabilities.

Here's the short list of what I've come up with:

1) "The Eight Limbed Boy," "Manar's Story: Born with Two Heads," and something called "My Shocking Story" that featured conjoined twins called "human spiders." (I kid you not!) All on FitTV.

2) "Born Without A Face: Five Years Later," about a child with a rare condition that causes bones not to develop. On FitTV.

3) "Mystery Diagnosis" has reappeared, from the late Discovery Health, on the new Oprah Winfrey Network. ... Recent episodes featured "the toddler that stopped walking," "the girl with no bowel," "the boy who only hopped," and "the toddler that went through puberty," to name a few.

4) FitTV also has several series about psychological disabilities ("Addicted to Food" & "Help! I'm A Hoarder)" and unusual pregnancies, which wouldn't be so bad except that "I'm Pregnant And…" frequently completes the sentence with "bipolar" or "may be having a dwarf" and similar disability-related terms.

5) The Learning Channel, another Discovery property, features "The Little Couple," which follows a couple of newlyweds for no obvious reason except they happen to be People of Short Stature a.k.a. Little People!

6) The problem is not unique to cable. A recent installment of ABC's 20/20 highlighted an amputee weightlifter … simply as an example of someone who defied expectations, I guess … which is another flavor of freak-show.

I welcome your reactions. For my take on these and other examples, you'll have to wait for my NPR commentary. No idea when that will be, though. My editor is working on getting clips from these programs to illustrate my points.

Meanwhile, here's the next installment of MIRACLE BOY

The Recovery Room.

A tube is inserted in my nose. Maybe it's been there all day but I'm just now feeling it. It makes it hard to swallow my own saliva.

The room is dark and crowded. Lots of people on lots of beds, countless machines beeping and humming.

No TVs.

I float in and out of sleep. Well, of consciousness. I'm not permitted to see my parents until morning. I'm not sure I'll make it till morning.

I hear someone in another bed—an old woman, it sounds like—discussing the difference between "mottled" and "modeled." She's trying to explain a mark or a feeling on her skin and the nurse isn't getting it. I want to help. I'm good at explaining. Mom always says words are my strongest tool, and I have learned time and again it is so.

Respect for the word ...

But I can't help this poor woman across the Recovery Room. I can't get up and I can't speak. This must be what it feels like to be buried alive, I think.

I try to memorize everything that's going on around me, so I can put it in words later, in my notebook, but without my glasses I can't see and without my brain fully switched on I have a hard time stringing together pairs of sentences in my head. Forget paragraphs. Later, I think. I will write all this later.

But first I have to stop feeling like I've been run over by a Mack truck. Whatever a Mack truck is exactly ...

Big Mac.  Mack the Knife. Maybe that's better. Stabbed by Mack the Knife.

When morning comes, I'm thrilled to see light. Whether it's the fluorescent bulbs outside the Recovery Room or the summer sun shining through the windows, I can't be certain. Either way it's bright and new and I'm rolled out of the recovery room and I'm okay. Mom and Dad are there—here, coming up to my rolling bed. I'm transferred to another bed, one in the I.C.U., which is a big room with five or six patients near the nurse's station. Each bed has its own little Sony Trinitron color TV. Feels almost like being home again.

Dr. Levine visits. He says he was able to do the two parts of the spinal fusion at once, in that one surgery. We're ahead of schedule. "But your bones are like eggshells," he cautions. "You need more milk.  More calcium."

Later I'm given a small plastic plug to close off the trach so I can talk. It doesn't come to me right away, and I struggle and gasp until at last I can speak in small increments.

Whenever I feel pain, which isn't often, I'm given a dose of Demerol in my I.V. It's the most wonderful sensation I've ever experienced—a luscious, tingly warmth that spreads within until I fall blissfully asleep. Soon I have to cut back on the doses; requests for more receive a "can you wait a bit longer?" or outright denial.


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