Hero’s Journey

Shade is home after five weeks in multiple hospitals. After a second stroke, and then a third stroke. After multiple sessions of MRIs and MRAs and angiograms. After weeks of intensive therapy at the best damn therapy hospital I’ve witnessed. (We’ve seen a few, and no disrespect to the other fine establishments, but Brooks was extra superduper special with ice cream.)

Shade had gotten in the rhythm of six sessions of therapy daily with an army of occupational, physical, speach, music, and recreational therapists, and their assistants, interns and volunteers helping him through the tough job of getting his left side to wake back up. Not to mention the fantastic doctors, nurses and techs checking up on him and the meal staff taking his order and delivering his three hot meals to his bedside. Shade became a veritable celebrity patient amongst the staff. On his graduation day, when he gave his speech, it was accompanied by laughter and tears from the gathered crowd. Employees kept popping into the room the last day to say goodbye.

And then he was released. Everyone take a deep breath and sigh. It’s all over.

Except for the part where Shade has to get used to living in his house, which he used to be able to navigate easily by scooting, crawling and, most recently, walking. Except now he can’t use his left arm. Despite the great strides he’s made on that side, it’s not enough to help him get down the stairs, even scooting on his bottom. He can’t raise his arm above his shoulder or support himself on a handrail. He can very slowly close his hand, but he cannot maintain even the slightest grip and opening  his hand is extremely difficult. Thus, no picking up anything, even a sock. Forget tying a shoe. His left leg is a bit better than the arm, though it’s still much weaker than it should be. It tends to drag when we assist him with walking and he often rolls the ankle or step on his other foot. He doesn’t have the strength or balance to stand. We’re planning lots of therapies to work on this, but it’s a road that disappears into fog. We don’t know how it will end.

After the first stroke, and the recent second and third strokes, he never complained or questioned the reasons. But the day after Shade and Mami got back home from Brooks, Shade came to the realization of what he’d lost after putting in so much time and effort to recover. For the first time ever, he turned to Mami and said, “Why did this have to happen again?” He didn’t dwell on it, but the thought is now lingering there.

I wonder the same thing. My big brain tells me that this happened by chance. Random mutations in some tucked away DNA strand in the embryo that became Shade. The small flaw in the architecture that blew it up. Like the exhaust port on the Death Star. (The incompetent space engineer that designed that beauty got fired. Literally.)

The part of my brain that believes in the force and elves and the Greek gods and awesome (Adj. inspiring awe) stories wants to blame some invisible sky man or some virulent spirit or a glitch in the Matrix for the barrage of shitty luck that’s plagued Shade. After all, a story is always better with an antagonist. But blame wouldn’t help the situation at hand.

Shade’s at that point in the hero’s journey where he faces the abyss. He’s overcome great odds only to be thrown down hard, his lowest point, where it would be easiest to give up. Like when Luke got his arm lopped off by his daddy (Noooo! That’s not true. That’s impossible!) and then fell into the shaft and hung on with one arm for dear life on the ass end of Cloud City, questioning everything he ever knew and waiting for the worst. Sure, his arm was gone, but it was the damage to his psyche that threatened to make him quit.

Guess who got Luke out of his predicament. His friends. After sending out some force instant messages (Come get me), he got picked up by Leia and Chewie (and Lando, too), and they got him back to working order (with some robotic assistance.) And then he saved the galaxy … for a while.

That’s what Shade needs now. He needs good friends who are willing to spend time with him, exercise with him, play games, or just chill. We’ve got the therapy lined up and the doctor’s appointments scheduled. If you can help with the friendship part, that would help immensely.

(By the way, thanks Cody for coming over today and hanging out and all his friends that Facetimed him in the hospital.)

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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.

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.

Rainy Day

Zipping across Lake Down

Zipping across Lake Down

There’s an old Taoist tale about a farmer talking to his friend about how he got a new horse, to which the friend said, that’s good, to which the farmer said, it kicked my son in the leg, to which the friend said, that’s bad, to which the farmer said, then the army came conscripting boys but they wouldn’t take my son off to war because of his broken leg, to which the friend said, that’s good, and so on, ad infinitum. The basic idea is everything just happens. It’s a great philosophy for taking the power out of bad news and making everything all right.
Shade, Mayan and I were invited out on a boat with friend Todd Howell and his son Braden. To IMG_8239prep, I showed the boys “I’m on a Boat” by Lonely Island. Definitely not appropriate for children. The boat was a family heirloom. Had some years on it, but was well maintained. We headed to Todd’s at 10 a.m. and the rain had already started. We hung out for an hour and it poured harder. We hopped in the van and headed out around 11 a.m.

By the time we pulled up to the boat ramp on Conroy-Windermere IMG_8183Road, the rain was in auto-pour mode. By the emptiness of the parking area, it was apparent many boaters had given up. We checked the sky and there were some questions of whether we should go out. But we said, “Shoot, we’re already here. What’s a little rain? Let’s do it.”

Todd gunned it and we were whipping across the water, needles of
rain piercing our clothes. Shade took off his shirt to let the drops IMG_8224sting him. I gave him glasses to keep it out of his eyes. We had the lake practically to ourselves. At one point, in the middle of Lake Down, Todd stopped the boat and the boys jumped into the water with life jackets on. I think the distance from shore made them nervous because they swim great without them. It was still drizzling, but the air was warm and the lake was like bath water.

We got the boys back in. The rain let up. We headed down the canal that connects Lake Down to IMG_8233Wauseon Bay. It felt a bit like a scene from Apocalypse Now as we puttered under the canopy of cypress, the boys standing on the bow, checking out the weeds flowing underneath. Halfway down on the left was a side canal. Todd steered down here. Back in sixth grade I used to live on this canal. We pulled up to the back of my old house. I showed my boys where I fished for brim. A gar stole my rod off that bank once. Shade and Mayan got to connect a little with my history, just like I did back in England earlier this year with my dad and brother.

IMG_8248Eventually we got out to Lake Butler and pulled up to Bird Island, a bird sanctuary out in the middle. Boaters anchored in the shallows of this cypress stand to chill or barbecue or jam out to Led Zeppelin. We anchored and jumped in. I gave the boys goggles and they swam after bass back and forth under the boat. Shade was in his element. He can hold his breath twice as long as me. The water got smooth. No wind, no wakes. A boat pulled out from between the half submerged trees, towing two lumberjack-looking dudes. They went zipping back and forth across the lake.

By this time, the sun was pushing some light through the gray clouds, just enough to warm the air and cast a glow over the forest. I got a picture with my boys. I’m lucky to have them and I told them so.

IMG_8253That was a perfect day. And it wouldn’t have been if we hadn’t just gone with it. The rain isn’t good or bad. The rain just is. I’m trying to live by this philosophy though I fall short a lot of times. Impatience is my biggest hurdle. But hey, it’s the journey not the destination, right? I think that since Shade’s stroke, our journey has been more adventurous. We’ve had a fantastic journey so far. And as long as I can collect some great times like this along the way, the rain is all right with me.

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.

Taking things for granted

Shade’s had a good summer

As of late, I’ve been thinking about how much I take for granted. Or as I’ve read in many a student essay: taking things for granite. What a lovely concept. I have a great family, nice house, meals on the table, but I often mistake them for a granular igneous rock out of which I might just make a kitchen counter. So goeth the English language, a living organism that metamorphoses daily through the goofs of the users.

I take for granted that my son survived a deadly stroke. I take for granted that he’s able to go to school and participate in classes. I want to stop taking everything for granted. I want to write about the greatness that happens daily but has been invisible because I’ve been living in my own microcosm. It’s a selfishness that has become my norm. My life is easier when I refuse to look outside the safety boundaries I’ve created for myself, when I keep my thoughts to myself.

See that. I managed to redirect that last paragraph to me (selfish) when my real focus should be Shade. He started eleventh grade this Monday at Central Florida Prep, two weeks before public school. He was ready. He had been volunteering as a Junior Counselor at St. Paul’s Presbyterian Blast Camp, the summer camp he was going to when he had the stroke. He worked with the young’uns, keeping them in line, helping them with activities, etc. He liked it, but I think he was ready to hang out with kids his own age again.

Of course, with school comes another year of struggling with homework. Yet somehow he manages to clear a bit of space in his injured brain to pack in advanced learning. He’s taking Geometry and U.S. History and Business. I hope his brain allows him to utilize these ideas in his future. He still has problems with long-term memory. The ideas flit around the surface but don’t like to bury deep in his mind.

That’s another thing I take for granted: my brain. It’s a lovely brain, but it could go at any moment. So could yours. Don’t freak out about that. Just appreciate it while you have it.

Shade is in mid-teen mutation as well. He’s sprouting up like the unkempt bougainvillea in my backyard. (I’m a lazy gardener.) He’s dealing with acne, which drives him nuts. It angers me a bit that he has to have acne, as if being angry helps. It’s as if Loki the trickster god thought, Here’s an easy target. Let’s give him one more issue to deal with. Hey, Loki, you deadened half his face already. He can’t shut his right eye. Quit torturing the kid.

He’s still rolling around in a wheelchair, but he goes to therapy every week to practice his walking. If only he could get his balance back. He’s got plenty of strength, but he still topples like a hewn pine when he takes a step. He can stand and crouch. He stands for long periods of time without assistance, but as soon as he takes a step, he falls. Is there another part of the brain that balance shifts to when the foot is put in motion? Must be.

There are new technologies that might help. WeHab uses a Wii Balance Board to help stroke victims regain balance through feedback. KIINCE is a company that developed a rehab machine that helps rebuild neuro-pathways that control balance. And Aitza’s got a friend who had a stroke that is undergoing an experimental stem cell procedure that may help him walk again. We’re looking into some of these. But as of now, he’s going to be in a long-term relationship with his roller.

Anyway, I thought some of you might want an update on Shade’s Progress. Aitza constantly tells me: There are people out there that need to know about him, people that have had strokes or traumatic brain injuries and want to see what others have been through. Shade can still inspire. He’s got that power. I guess that’s part of the “not taking it for granted” thing.

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