How to freeze time

All you would-be wizards, mad scientists and time lords, get your notebooks out. I’ve discovered the secret to freezing time. First, get a hotel on the outskirts of Durham near nothing worth visiting. Second, make sure you do not have a car so that any journey away from said hotel is a bit of a hassle, thus inducing you to stay put. Third, in your room, draw those thick curtains that block out all sunlight. Fourth, have plenty of snacks and drinks stockpiled in your mini-fridge. Fifth, make sure you share the room with someone that needs a lot of bed rest. If you manage to maintain these five steps for an extended period, time itself will grind to a halt. Night and day will cease to exist. Presumably, if you can keep this going, you will not age though you may feel like you’re a thousand years old. Side effects may include a trance-like state involving sitting on the edge of your bed and watching 1990s reruns with repetitive insurance commercials and/or a desire to smother yourself to death with hotel pillows.

Of course, for Shade, the hotel stay was a welcome respite from the noisy, smelly, glaring confines of the hospital ward. He basically hibernated for three days while his face healed. His cheek has swollen up a bit, which was expected. Mr. Chipmunk hasn’t quite released his grip. But Shade has experienced little to no pain. He doesn’t even take pain pills. IMG_5333Meanwhile, I’m popping Ibuprofens like candy because I was foolish enough to break my hand a week back while in Denver. (Long story short: Some malevolent no-good-nik attacked my fist with his nose.) I’ve been hunched over the keyboard two-finger typing these updates like a stereotypical beat cop writing up the day’s arrest reports. Please forgive any typos.

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Shade’s first meal out

The day Shade was released from the hospital, Dr. Phillips referred us to Kathryn Walker, a smile therapist. (Just when you thought there were no new job titles left!) She works with patients who have facial procedures or suffer setbacks in facial operation to help them get back their smile. We weren’t there long as Shade couldn’t perform the therapy yet. He needs a couple months of healing first. But Kathryn did give us a list of smile-building exercises, which I have deemed “yummy therapy.” To strengthen the right side of his face, she suggested chewing Bubbalicous bubble gum on that side. Aitza recommended watermelon flavor though I’m a traditionalist and believe he’d get better results with bubble-gum flavored bubble gum. (Perhaps I’m just boring. The other evening, I walked down to Cookout, a local burger joint that offers 40 flavors of shake. I panicked at the overwhelming selection and just got vanilla.) Another therapy involves moving a lollipop from one side of his mouth to the other, starting with a big BlowPop and working his way down to a tiny Dum-Dum. To me, however, that sounds counterintuitive. No one wants to graduate from BlowPops to Dum-Dums. You learn that during your very first Halloween candy-trading session.

IMG_5284After an eternity at the Hilton, we’re finally heading home. (I’m writing this on the plane.) We stopped by Dr. Phillips’ office first and he gave Shade a quick examination and took photos for before/after comparisons. The swelling is causing a bit of eye droop, but the doc says after the swelling subsides, he expects Shade’s face to be almost symmetrical. Next, step: Getting a symmetrical smile. Bring on the lollipops!

 

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The Lost Island of Atlantis

“And in a single day and night … the island of Atlantis in like manner disappeared in the depths of the sea.” That was the ancient philosopher Plato’s description of Shade’s recent facial reanimation procedure, during which Dr. Marcus and Dr. Phillips removed excess fat and skin from the right side of Shade’s face. Skin Island has vanished, much to the chagrin of the tiny monkey’s living in the curly coconut trees thereabouts. Its whereabouts have become the grist of speculation, superstition and legend.

58309199613__69741F8A-42AF-4DFA-8F3F-3510EE4CA848In other words, Shade’s surgery was a complete success. Dr. Phillips explained that they did not have to touch any muscle in the process; the excess skin from the graft was completely removed; his natural cheek skin was stretched over the muscle and glued down with a biological glue; and Shade was left with a single thin scar along his jawline. Presumably, once the swelling reduces (Mr. Chipmunk still has a bit of a grip), his scar will be barely noticeable.

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So symmetrical!

The surgery was quite short – two and a half hours total – a breeze compared to his last procedure, which was ten hours. Upon his waking, I took a picture of him from the front and his face is nearly symmetrical. I showed the pic to Shade, who in his post-anesthetic delirium, slurred, “I look like a fucking super-model.” Yes, you do, Shade. Yes, you do.

 

Unfortunately, the hospital was packed so there were no private rooms available and Shade and Aitza had to spend the night in a post-op ward with only one of those thin shower-curtain dealies to block out light and noise. Little use with those glaring florescent hospital bulbs and the grown man next door sobbing uncontrollably. (Not sure why, but he did all night.) Double the problem that the cubicle was right next to the nurse’s station and the bathroom, so they had the pleasure of listening to the night shift cackling, giggling and flushing overflowing urine jugs all through the wee hours. As if to taunt Shade and Aitza, the computer monitor in the room kept flashing a screensaver with a kid doing the international “Shh” sign with his finger and a message saying: “Please keep it quiet while healing is happening.” Yeah, right.

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Oreos make it all worth it.

When I returned to the hospital this morning, Shade and Aitza had the bloodshot thousand-yard stares of combat survivors. But they’re war veterans by now and shook it off quickly, especially after I brought Shade some Oreos. After all, it was time to leave the battlefield and return to the soft, quiet beds of the Hilton, where Shade is now snuffling gently amongst a pile of fluffy pillows. The next few days will be devoted to rest and recovery until his final appointment on Friday and then home.

 

 

Goodbye Mr. Chipmunk

IMG_0023Shade, Aitza and I are back in the lovely township of Durham, NC, for Shade’s final (hopefully) procedure at Duke University Hospital. We flew up yesterday (My third day in a row in an airport. Oh, the glorious world of travel.) and got upgraded to Comfort, which means our legs were not folded up under our chins for the 1.5-hour flight. This is the Shade advantage. People like to give him stuff. He said he wants to monetize this situation by selling wheelchairs outside the airport but I explained that then the pre-boarding line for people with disabilities would have 200 people in it, so it would backfire on him. I like his entrepreneurial spirit though, however misplaced.

For those new to Shade’s medical journey, a recap: After 12-year-old Shade suffered a debilitating stroke on July 14, 2011, he had right-side facial paralysis (among many other traumatic issues), leaving him with half a smile, an eye that wouldn’t fully close, and some serious lip and cheek chewing. Imagine the feeling when a dentist has numbed your face for dental surgery, but it lasts for the rest of your life.  With no movement, his IMG_6447muscle deteriorated to the point that his cheek was flat. After much research, I found Dr. Marcus, the nerve/muscle graft guru known here as the Smile Doctor, whose specialty is facial reanimation, bringing back life to paralyzed faces. So last year he took a nerve from Shade’s leg and grafted it from his left cheek across his upper lip to his right cheek like an extension cord. He let that get cozy for 6 months and then last December grafted muscle from his thigh into his cheek. Because the skin on his cheek had tightened so much, Dr. Phillips, his plastic surgeon, had to add skin from his thigh as well to cover the extra muscle and fat added underneath. I just found out the graft area is known as the skin island, well named as the pale thigh skin seems to float in a sea of his ruddy facial skin.  I guess that makes the weird thigh hairs growing on this island the coconut trees. He ended up with what Shade deemed “a chipmunk cheek.” Between that and the scars and the skin island, he got his share of stares, but Shade is impervious to stares. It’s one of his super powers.

We checked in this morning to the hospital, and both Dr. Marcus and Dr. Phillips visited. They were all grins at Shade’s grin, which is getting more symmetrical as the right side of his face wakes up. Dr. Marcus was happy when Shade said he gets pins a needles in his face, another great sign of the new nerve and muscle coming to life, and he was pleased with Shade’s nasolabial fold, your vocabulary term of the day. That’s the groove on each side of your nose that go to the corners of your lip, which deepen as you smile. Shade hasn’t had one on his right side for years.

IMG_3913The doctors consulted with us about this procedure, which thankfully will be much less invasive. (The last one took months of healing including multiple stays in the hospital over Christmas.)  Dr. Marcus’s plan is to debulk the area under the skin. I guess the last procedure was the bulking part. They put extra fatty tissue under the cheek to ensure he’d have enough matter underneath, after the swelling subsided, to make the sides symmetrical. Had I known this term, his cheek would have been nicknamed the Incredible Bulk. Oh well, missed opportunities.

Dr. Phillips will next remove the skin island, or at least as much as possible. The grafted skin over the site is quite loose, and he said he’ll trim it little by little until the area is covered properly. At worst, Shade may have a small strip of grafted skin along his jaw line. We’re hoping for full removal because that patch is hell to shave.

Shade went into surgery at 11:08 a.m. I’ll update you, post-chipmunk removal.

 

 

 

Past Progress and Next News

It’s been since last  April that I last posted in Shade’s Progress, when he had his nerve graft surgery at Duke University Hospital. Just a reminder, they yanked a wire out of his calf and threaded it from his left ear to his right so that his cheek could get some spark back. The following up surgery is coming up. I’ll tell you about it down there.

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Florida ID

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Registering to vote

First, let’s update. Shade got a Florida ID (not for driving. Trust me, you don’t want him behind the wheel. He drives his electric wheelchair like Mad Max.) and then he got his voter registration card. Civic duty awaited and our son got to experience for the first time that dirty feeling you get for voting for the least despicable candidates. Shade’s still serving up good will at The Simpsons Restaurant, meeting folks from all over the globe and local friends, like our Indian Guides buddies Chad Adams and Bill Ellenback, who work out there. If you go out there, stop by.

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Shade also traveled with his two brothers, Mayan and Edwin, his Tio Loco and Tia Gigi and Mami to England, where Shade got to enjoy a legal pint of beer. Shade’s a world traveler. Shade’s also been fully immersed in the Pokemon universe as is Mami and they’re constantly grabbing mythical creatures out of the neighborhood. It’s not rare to be caught in a car conversation that involves a Squirtle, Snorlax and Lickitung. If you have a Charmander prowling your neighborhood, call Shade. He’ll take care of it.

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Finally, Shade has grown out his hair for a couple years and he recently got it trimmed off so he could donate it to cancer patients who need wigs with real hair. He’s sending silky locks to Locks of Love. Now if I can only get Aitza to get the decapitated pony tail out of the napkin holder on the dinner table and into a postal envelope… (I’m going to get hell for this crack.)

So now to next news. Shade healed up nicely after the last surgery, and has been feeling a lot of twitching in his face. Now comes Step 2. We’re heading back to DukeU Hospital for Facial Reanimation. Sounds like a movie. “Shadenator is back and he’s mad as hell!” What this boils down to is Shade’s muscle graft surgery. They’re going to take a muscle out of his thigh (not a whole muscle but a strand so it shouldn’t affect his leg strength. Then they’re going to go in under the skin of his right cheek and graft in the muscle where the nerves have already spread out they’re electric tendrils. Over time and with physical therapy, the nerves will splice with the muscle and soon he should be moving his cheek and mouth where previously it’s been paralyzed. Basically Shade will get his smile back. At least on one side. His other side already had a beautiful crooked smile which he uses constantly. (DukeU Hospital’s site will show you more details if you’re interested.) Oh, and during the surgery, they plan to put a stitch on the corner of his eye to lift the lower lid. That way he can close his eye a little more and the tears won’t be so ready to run out and dry out his eye.

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Shade taking the Lynx Access shuttle to work.

The surgery is scheduled for December 10. Aitza will fly up to Raleigh on the 7th and I’ll join them on the 9th, flying from New York, where I’m working the Two Dope Queens show at Kings Theater in Flatbush. Flatbush is a trendy spot in Brooklyn, for all you folk that haven’t explored the area. Brooklyn is a place in New York, for all you Florida folk who never left the state, or at least the South. I’ll keep you posted as details emerge.