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.

Advertisements

Recovery update: Tired

Shade’s friend Cody came over yesterday to hang with him for a bit. They did the regular post-brain-surgery boy stuff. You know, noogies, wrestling, roundhouse kicks to the head. Okay, maybe they just sat in his room and talked. He enjoyed it, but it also wiped him out. By six p.m. he had passed out on the couch.

Today he’s been really feeling the effects of the Gamma Knife rabbit punch to the brain stem. He’s been lethargic and very sensitive to light and noise. He spent all day lying in his brother’s room with the curtains drawn. (Mayan’s room is darker.) He’s also been dealing with a nasty throbbing headache. This might be from the swelling in his brain, or it may be from the four clamps that were screwed into his skull to hold the Gamma Knife helmet in place. (Can’t have a wobbly helmet during brain surgery.) The skin around the clamp areas is very sensitive, and he doesn’t like even a soft pillow touching the areas. Aitza’s had to do some creative pillow arranging so he can rest.

We’re going to keep him out of school for a bit until he’s feeling a bit more energetic and clear headed. He was supposed to have midterms but his noggin couldn’t handle that right now. Just like a high-school boy. He’ll do anything to get out of a test.

 

Dramatic Plot Twist

Inside Fort Matanzas

Inside Fort Matanzas

In a movie, whenever the camera pans across a scene of natural splendor, you can expect something bad to happen. It’s a cinema trope. Make the protagonist comfortable, and then drop a boulder on him. Without conflict, story doesn’t exist. So if a director says, “Let’s capture this stunning snowcapped mountain range glistening in the sun,” you can guarantee an avalanche is coming.

Last week I took Shade camping with the YMCA Indian Guides at Princess Place Preserve in Bunnell, Florida, about 15 minutes from St. Augustine. It’s a 1500-acre parcel of bucolic Florida wilderness. I never liked that word bucolic. It sounds like a respiratory infection. However, I think it fits here as the park is home to historic buildings such as an old livery stable, equestrian trails, a huge salt marsh, massive live oak stands, and Florida’s first in-ground swimming pool, fed by an artesian spring. It’s the epitome of a Southern pastoral setting nestled on the shore of the Matanzas River.

Standing atop Fort Matanzas

Standing atop Fort Matanzas

During the campout, we visited Fort Matanzas National Monument, which guarded St. Augustine’s back door. It’s about 14 miles south on the Matanzas River. The approach is dramatic. We started on the nature path which passed the banks where Spanish soldiers slaughtered a few hundred lost French soldiers who had surrendered. That’s how the fort got its name, which loosely translates to “slaughter.” We took a pontoon ferry across the river toward the looming fortress, giving us a good look from an invader’s standpoint. Guards in traditional Spanish soldier uniforms walk about and explain elements of the three-story stone fort such as the big cannons pointing down river to stop those nasty Brits or Frenchies from sneaking up and causing havoc. Shade climbed up the stairs and ladders to the top, where a large flag flapped to Hurricane Jaoquin’s distant exhales while gray clouds boiled overhead. We got a pretty cool pic of our entire group on the roof.

Fishing in the Salt Marsh

Fishing in the Salt Marsh

Afterward we went fishing in the salt marshes. The sun was positioned perfectly to reflect in the mirror water the cloud-blotched blue sky. We caught no fish (I don’t think I’ve ever caught one), but the view was magnificent. As we finished fishing, Shade’s buddy Cody noticed hermit crabs on the stones by the bridge. I grabbed twenty hermit crabs to tote back to camp for crab racing. I had big plans for a betting ring. We learned that hermit crabs are extremely shy and horrible at racing and within the hour, I had returned them to the salt marsh. We spent the rest of the night enjoying bonfires and brisket.

A beautiful weekend. From a movie standpoint, you couldn’t get more ominous.

The plot conflict came on the Tuesday afterward when Aitza took Shade to see Dr. Trumble. A few months back they performed an angiogram on Shade and discovered that he still has a small nidus, that little tangle of arteries and veins that caused his bleed four years ago. The Gamma Knife treatment performed on him in December 2011 destroyed most but not all of the arterio-venous malformation.

Here’s the dilemma. With each year, his risk of a bleed increases by 1%. The doc said if you’re 70-years old, no big deal. You may get up to a 10% chance of a re-bleed. You’re nearing the end of your rental agreement anyway, so to speak, and making big renovations wouldn’t be worth the risk. But a 16-year-old boy still has a good 60-70 years, maybe more. So in your later years, your percentage of a re-bleed may be 60-70%. The procedure has an 80-90% chance of destroying the rest of the nidus completely. I hate math.

The procedure has its own risks. The location in the pons (the brain stem, which is a dense nerve bundle) leaves him open to some more damage to surrounding healthy nerves, especially a few cranial nerves. Shade’s already got facial palsy and can’t shut his eye, but we don’t know how much more damage to his face it may cause. His coordination might be more at risk, too. Plus, the brain swells a bit when you shoot it full of radiation. Go figure.

The full effect of any damage is unknown until they do the procedure. Afterward, we’d have to wait three years to see if the procedure was totally successful. This would also be his last shot at destroying it because of the level of radiation Shade’s brain would absorb from this second Gamma Knife procedure.

Of course, damage from a bleed would be much more devastating. If it happened at all. Whatever decision we make, it’s going to affect the plot of this movie. I just wish Shade wasn’t the protagonist and that the dramatic plot twist didn’t involve his poor abused brain.

Fantastic Voyage

Shade prepping for angiogram

Shade prepping for angiogram

I’m old enough to remember The Fantastic Voyage. Not in the theater. (It’s possible I heard the audio track as a simmering fetus in the womb.) I saw it on TV sometime in the early 70s, and I was blown away by what the future held. Sexy secret agent Raquel Welch, with her retinue of doctors and assistants, would shrink to a millimeter and drive her submarine through the bloodstream of a sick man, right up to the brain to remove a blood clot. What a fantastically ridiculous piece of fiction!

So, last week Shade went to the hospital for an angiogram. This is a process in which a retinue of doctors and assistants drive what amounts to a submarine camera through his bloodstream, right up to the brain to check out where his AVM took place. This was a real process! It differed from the sci-fi in that none of the surgery participants looked like Raquel Welch. I’m pretty sure none of them were secret agents, either. Also, thank goodness, there were no saboteurs as in the original, so the procedure went smoothly.

What I want to know is how do they know when to turn left or right? Are they using Google maps? Are there landmarks? Is there a backseat driver saying, “Okay, like in thirty seconds you need to take the exit ramp off the femoral artery and then merge into hemo-traffic at the next … Watch out for that platelet!”

The purpose was to find out what was left of the AVM since the gamma knife surgery back in December 2011. (A gamma knife sounds like it could have been in The Fantastic Voyage.) Preliminary results are mixed. 95% of the AVM was destroyed by the gamma knife. That’s great. But there’s still 5% of the veiny knot that’s being fed blood. The doctor who performed the angiogram didn’t give any definite indication that this was dangerous or not. (Doctors seem to prefer vagaries when making predictions.) But he did say that there might possibly be, maybe, perhaps a slight danger because, well, it’s there.

We won’t know the full word until the results of the procedure are analyzed by the doctors. Then we will have to consult Dr. Trumble to see if he might need another gamma knife procedure. Maybe Dr. Trumble says there’s not enough risk to warrant it. Maybe he says that Shade has already received his full dosage of radiation from the last gamma knife and more would turn him into a raging green beast. (You know, the Hulk effect.) Or maybe they decide to perform this brand new procedure. It involves a sexy secret agent, with her retinue of doctors and assistants, who will shrink to a millimeter and drive her submarine through Shade’s bloodstream to destroy the 5% leftover.

I’m hoping for the third option.

Plastic brain

I didn’t mention that yesterday was the five-month anniversary of Shade’s traumatic brain injury. Wow! Time moves so quickly. Time moves so slowly. Everyday, Shade sees improvements. More new memories are sticking. His balance is getting a bit better. It’s not fast enough for me, but I’ve always had an impatient streak. I think microwaves cook too slowly.

What’s remarkable is the plasticity of the brain. Neural paths that are damaged do not regrow, but the brain has the ability to reroute the paths. It’s similar to taking an alternate route to work when the highway is closed down. It may require some extra time and they might lead to some dead ends, but eventually the brain can find a new path to its goal. It seems the rerouting is more efficient and effective when there is a true need, desire or impression. That’s why Shade can remember things about his cat or a toy he wants for Christmas or the reason behind the painful cuts in his head (Gamma Knife Halo) but he can’t recall what day it is. Info about the day has no real relevance in his life. It’s extraneous information. But pain, love and Christmas longing forge their way into the memory.

Talking about the ability of the brain, I don’t know if your remember back when Shade was first in the hospital and there was a young girl, Maggie, who was in a car accident and had severe head trauma. She was in a much worse state than Shade, and her mom, Angie, was told that Maggie had no brain activity and would probably never wake up, that she would be a vegetable for life. Well, she’s now talking. It’s only about 10 words, but she’s awake and aware. Maggie has a huge journey ahead of her, but she’s taken a few steps in the right direction. When we were in the hospital and Angie was relaying the desperate and tragic details of her daughter, Aitza kept repeating the same thing to her. “Never give up.” And Angie kept the faith and now her daughter is coming back to her.

We keep the faith that Shade will fully recover. He’s built up some great momentum. I’m excited for the day when he can take his first steps alone, or run again, or hop on a bike. It’s like being a new dad. I know it’s coming soon. Just not soon enough.