This Path

Back in my college days, I read a book by Richard Bach entitled “One,” in which the main character encounters alternate paths of his life, all of which were happening simultaneously. To boil it down, it’s Fate meets Chance: the particular life you are living is one of endless lives that have happened and could happen and yet this particular life couldn’t be any different. A choice, a happenstance, a situation is merely a turn down a path that was already there and could be no different because it’s that path. And yet another quite different path could be chosen — or stumbled into or thrust upon — because that path is there, too. Infinite options all laid out.

Alright, maybe that’s a bunch of hippy shit, but it helps me cope with Shade’s recent stroke Saturday, May 28, his second in five years. Aitza, Shade’s blessed mother, the rock of our family, was called from slumber by Shade’s distressed calls last Saturday. He couldn’t move his left side. She dialed 911 and he was rushed to Florida Hospital.

I recieved the call from the other side of the damned continent, The Gorge in Washington, where I was working the Sasquatch Festival. I was shooting a Chet Faker concert for Yahoo, my first time behind the camera at a live music venue, so I was pretty stoked. As I focused in on the singer, I felt my phone vibrating in my pocket. It stopped, and then went off again. And again. And again. I knew something was wrong before I ever pulled the phone from my pocket.

Many already know the circumstances through Aitza’s Facebook posts. (Those posts were all her, by the way. And I think she’s a damned great writer.) For those unaware, the gamma knife surgery he had back in December caused a blister in the pons (brainstem) which burst. It wasn’t a huge bleed like his first stroke, but it did release blood, which caused swelling in the brain and the paralysis on his left side.

Aitza and I discussed what I should do. Despite his injury, Shade’s life wasn’t in immediate danger. And obviously we were going to need the paycheck from this job to pay the ominous mountain of hospital debt now looming once again on the horizon. So we both decided I should stay. It killed me, but it was the best thing. God bless Facetime. I at least got to see and talk to my boy.

Florida Hospital for Children ran tests and monitored him. The bleed area is contained so now it’s a waiting game. Yesterday he arrived at Brooks Rehabilitation in Jacksonville, which is considered one of the top rehab centers in the country. We’ll update you more on that. (To join Shade’s Facebook page click on the column to the right.)

When I finally made it back to Orlando at 6:00 a.m. Wednesday, I drove straight to the hospital to find Shade and Aitza asleep. It was a weird deja vu moment recounting 2011, my family hunkered down once again in the PICU. But this time, I wasn’t afraid. We’d already battled the beast once and crushed it. This pathetic attempt to strike again will face up to the same strength that destroyed it before.

I only had to spend one day in that hospital to know this. Because Shade was cracking jokes and wooing the nurses and trying his damnedest to move those limbs. And yeah, he cried a few times, because there’s genuine loss, near half his body. But he didn’t drown in sorrow. It was more like a quick rain gust that washed over him before the sun poked out. That boy is the strongest person I know. (Mom’s a close second.)

There’s a path in which our family falls apart. There’s a path in which Shade never had a stroke. There’s a path where Shade died. We’re not on any of those paths. We’re on this one, the one where Shade’s healing, and our family is going to love each other and laugh with each other no matter where the path takes us.

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Finding Focus

The explosion that erupted in Shade’s skull over three years ago knocked out his focusing ability. Shade has the attention span of a pyromaniac in a candle shop. Ooh, all the pretty lights.

Though his intelligence centers were not damaged by his stroke, short-term memory and focus did not fare so well. The MRI looks like someone tap-danced in those areas with golf spikes.

Thus, Shade’s school work suffers. He lags in class because he’s incapable of trudging up Homework Mountain without a study Sherpa to carry him. For example, he’s way behind in American Government class. Getting him to read the Articles of Confederation is like getting a Chihuahua to, well, read the Articles of Confederation. They’re both preoccupied with yapping at cats. (Shade’s cat fetish has not waned.)

So for every single homework assignment, someone has to sit and read with him, and explain with him, and write a little. Then read again, and

Shade getting study help from big brother, Edwin, and little brother, Mayan.

Shade getting study help from big brother, Edwin, and little brother, Mayan.

explain with him again, and write a little. Often it’s Mami. Sometimes Dad. This week it was big sister, Arianny, who’s in town for a week. It’s exhausting for Shade and for the Study Sherpa. It takes ages.

Shade’s not dumb. He gets the ideas. But then forgets them. And then gets them again. And forgets them again. Partly because he suffers short-term memory loss. Partly because he can’t pay attention long enough to transfer info to his long-term memory.

School demands focus if he’s going to acquire enough knowledge to have a career. A career demands focus if he’s going to keep his job.

How is Shade going to perform brain surgery if he can’t focus on the brainy bits? That’s a career tragedy waiting to happen: “Now, we just need a micro-incision right here in the meninges and … Hey, look at that beepy machine over there. Oops.”

So we’re trying something new. Shade’s neurologist, Dr. Kojic, has prescribed him Vyvanse, a drug often used to treat ADHD. (Back in my day, they didn’t have ADHD. They just called it fidgeting.)

This is a new edition of Shade’s Progress. The Focused Shade edition. Tomorrow morning (Thursday, October 2), Shade will take his first Vyvanse and we’ll see if he can switch from Dog Chasing Squirrel mode to Laser Beam Focus mode. We invite you to join the journey.