New Book About TBI – Chapter 5 – The Black Box

My book How Can I Fix My Brain arrives on the virtual shelves on the first of May. It’s subtitled Advice for living with Traumatic Brain Injury From Someone Who Walks In Those Shoes…  And that’s it.

On the evening before a bicycle race, I hopped on my bike for an easy 25-mile ride. With only three miles left to get home and to see my wife and girls, I hit by a car. Machines kept me alive for a week and I was comatose for a month. Doctors told my wife I might walk in tto to three years and, well, lets talk about going back to work after he can walk. But I walked in a month, ran in six weeks, and went back to work in five months as a nuclear chemistry specialist.

If I’ve leaned anything from this ordeal -and I’ve learn a lot – it’s that your body, your brain, and your recovery are black box. No one would predict my outcome to my wife on the night of my accident because they cant’. Fixing cuts and bones is the easy stuff, and it’s easy to put a timeline on healing. But the brain?

The book publishes on May 1, 2010. You can reserve a Kindle copy from now until then here. Paperbacks are available as of May 1. G bless!

This is Chapter 5 from the book.

Chapter 5

The Black Box


For All That Follows: A Black Box

“I don’t get it,” I told my doctor, my legs cold and dangling over the examination table.

He slid forward in his chair and looked at me with an intensity telling me he was ready to pontificate medical wisdom. “Get what? You don’t get what?”

“Look. Let’s say I get up in the middle of the night and roam around the house. I walk through the dining room to the kitchen, and the cat is there.”

He nods, hanging on my words like something important is coming.

“I scare the cat and jump out of the way to avoid her.”

He stops me, holding up a hand. “You’re not doing any jumping, right? You’re not ready for that.”

“No jumping,” I say. “I’m just making it up. So, I move out of the way to miss the cat and bump into the dining room table, and I fall down. I already know what will happen.” I stare at him to make sure he follows. “I know that when I wake up the next day, I’m going to have a plate-sized bruise on my thigh, and it’s going to hurt like heck. Then, in about three days, it’s gone.”

“All good,” he says, still staring. “I’m with you.”

“That’s it. That’s the question. I know that if I fall and bruise myself, I’ll hurt for about three days. Then I heal up and I’m fine. Right?” I wait for a nod. “So…why don’t I feel better now? It’s been a year since my accident, and I still feel like I got beat up yesterday. Why don’t I heal up?”

“What do you mean?” he asks. “You are healing up. You’ve healed up better and quicker than just about anyone I’ve ever seen. Let me tell you, I visited you in the hospital. No one predicted that you would walk into my office a year later. No one was sure you’d even live.”

“I get that, but I mean, every morning I wake up at 4:30. I swing my feet off the bed. And every morning it’s the same thing.” I touch my head. “From my head to the literal bottom of my feet, I ache.” He’s lost in thought and I’m not explaining it correctly. “It’s not that I hurt, I’m not in pain, but it’s more like I carry this weight around. Like I’m stuck in a vice, and every movement is a gargantuan effort pushing against an immovable object.”

He gets serious. “Do you want to talk about pain medication? There are things I can give you that would help.”

I chuckle. “We’ve had this conversation before, you know. I’ve never been prescribed long-term medication, and I don’t want to start now. To tell you the truth, pain medication scares the daylights out of me.”

“What’s up then,” he asks? “What’s the question?”

“My question is why do I still feel this way? It’s been a year. It’s been more than a year.” I grab my legs. “With a bruise to the legs, it’s three days and gone. Maybe there’s a bit of deep pain left, but I have to poke for it. I don’t understand why I wake up every day feeling like I was hit yesterday?”

He leans back in his chair. If he were Sherlock Holmes, he’d pull a clay pipe from the desk and prepare it for a thoughtful conversation. Instead, he tilts back and clasps his hands behind his head.

“Here’s the thing, Dennis. You were hit by a four-thousand-pound chunk of steel moving 65 miles-per-hour. You were in the hospital for three months.” He stopped for emphasis. “You are going to hurt for a very long time.” He looks at me as if we finally got to where the conversation was going.

“I understand that,” I said, trying not to sound frustrated. “But why? I don’t understand the why. Why do I still hurt? Why is my brain still wonky and waterlogged? I get what brought it all on. What I don’t get is why I’m still feeling the effects.”

The Secret

He let his arms down, scooted closer, and rested his elbows on his knees. It was like I was ten again and dad would swear when we talked – dammit, Den – and I knew we were getting serious, talking like men. “I’m going to tell you a secret,” he said. “Something doctors don’t talk about much.” I think he took a quick glance to the right and left to see if anyone was there to catch him spilling secrets.

“Here’s the thing. If your daughter is washing dishes and cuts her finger on a knife, it’s easy. Bring her to any doc-in-the-box and they can stitch it up. We all know what to do.”

“Can you recommend a good counselor?” I asked. “If my daughter is doing dishes, there’s something seriously wrong in our family.”

“But here’s the thing,” he laughs. “Anyone knows how to do that. It’s med school 101, and we know it works. We sew the thing up and cells grow together again. Take the bandage off in a week, and she’s good as new, with maybe a scar and a little soreness.”

“Nothing to it,” I say. “Easy.”

“About you, though. You didn’t cut your finger. A car hit you. Your brain was bleeding and your body quit breathing.” He scooted in again. “Here’s the thing, Dennis. When it comes to the brain?” he says, quiet. “It’s magic. It’s a black box. No one knows. It’s all stats.”

It was my turn to do the Sherlock Holmes scowl. “A doctor at Shepherd told me the same thing.”

“I’m not saying it’s a blank page,” he said. “And those folks at Shepherd are probably the smartest in the world about the brain. I’m a family doctor so any special training I have is in another area. They’ve got years of neuro training, but they’re in the same boat: when we talk about the brain, it’s a crapshoot at best.” He settled in his chair. “You already said they expected you to walk in two or three years, right?”

I shrugged.

“And you walked in a month?”

“And ran in two,” I said.

“Okay. The Miracle Man. Here’s the secret: no one knows why your body works like this. I don’t know. How is it that you are hit by a car and you stand up in a month, and someone else slips at Walmart and is wheelchair-bound for the rest of her life? No one knows. The secret is that it’s all a black box, and it has as more to do with you than it does with me.”

Sisyphus and the Rock

I will say it here as clear as I can: this is the take-home message. As you read through the book and read about my story, and think about my advice, don’t be too quick to compare it to yourself. I label myself a neurological agnostic and it helps me make sense of my situation. It seems – when talking about the brain – that it’s almost impossible to say what is absolutely true and what is absolutely false. If something works for me, I keep doing it but hold it loosely in an open hand. When you read through the book, my book, you’re reading my story and my understanding of what works for me and what has worked for others. Consider and try what I recommend. If it works, keep doing it until it doesn’t or until it plateaus. If something doesn’t work for you, quit but don’t completely discard it as it might be useful later. Put it on the shelf for the next time you’re looking for something new. Think of the book as a toolbox filled with lots of stuff you can use in different situations at different times.

My experience is that I heal and improve in short bursts, separated by plateaus that get longer with time and improvement. Healing explosions, if you will. For example, I play brain games and track my scores religiously. Over time, I notice that, for maybe a month, my scores improve every day. I get used to it. “Finally,” I think. “Finally, I’m on the road to recovery.” Then, after a month of steady, measurable improvements, the curve flattens. Maybe dips. I get despondent here, but keep at it, reminded of the Greek myth of Sisyphus who the gods set to push the same rock, up the same hill, forever. My friend? That is frustration. There’s no standing still. You push and sweat and swear for just an inch of ground, but – I guarantee it – the downhill roll comes easy. Sometimes, it feels like time to take a break, to rest, to set yourself with your back against the rock, and just relax. To dream a little and hug your child. Your brain and your entire body are still recovering. Forget your focus, though, and you lose ground. You’ve been handed something that requires your full attention. You’ll have to decide if you want it.

My Advice

It’s why you bought the book. Here’s my advice to carry through the book and through life. It comes from an old man who has recovered, and is still recovering, from a nasty brain injury:

Love yourself and everyone around you. Everyone wants you to get better.

Everyone is tired. Maybe it’s of our own making and maybe it’s part of the world we live in, but my wife has a twenty-point checklist to get through before she takes the girls to school. When she gets home from work, and when I get home from work, it’s all we can do to grunt a greeting at each other. We go to bed early and fall asleep as soon as our heads are parallel to the bed. So, love and forgive much, for others, for yourself, and especially to the people closest to you.

Love God. Admit that you don’t understand. If you think you’re starting to get it, stop. You don’t. You can’t. Thank God that you’re are alive, and that you get to hug your daughter again, and watch your dog’s crazy love for you when you feed him. In spare moments, wonder about what is next for you.

Eat well. Exercise. Get a pet. Read a book. Read a hundred books. Heck, write a book.

Learn to know yourself. My neuropsychologist told me that a hard whack to the forebrain like mine tends to move emotions to the front of your thoughts. It’s not completely understood, but what is? I know this about myself now. I know that a girl at the mall, walking and holding hands with her mom, will remind me of my daughter. I think about how brave my daughter was for me at the hospital, and right there, walking down the Mall, eating a pretzel, I can tear up. I know this about myself. But it’s un-American for a grown man to tear up, so I divert my attention. “What’s thirteen squared?” I wonder and work it out in my head. My wife says that, before my accident, she never saw me cry. I took it as a compliment, a reason people called me Mr. Spock. Now? Tears are waiting on the side stage all the time. But it’s funny: I’ve learned to want them there. I want to fully embrace my daughters’ crazy love for their dad. I want emotion to well up when I think about my mom, cooking sausage and cabbage for the family on Sunday.

In a few words? In the modern parlance? Love love, and feel the feels.

Get used to the weirdness. It’s a black box. Hold on loosely to what you know. Love yourself. Love everyone. Love hugely. Work on getting better. Treat yourself well. Thank God. Love God.

Thank God.

For a light overview of the book, go here.

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