Friday, August 31, 2012

The way to Yosemite

Friday afternoon, Labor Day weekend. Heavy traffic on 101 southbound, just north of the exit to Highway 152. A few miles before the exit Jim moves left, into the fast lane. 'There's another road further south across the valley', he says. 'Partly dirt'. Dirt is fine in his Jeep.

Avoiding 152 and I-5.

Peanut butter and apple butter on homemade hippie bread.
3 hours later we are heading north through Fresno at rush hour, on Highway 41. Never did find that other road! We have learned that Highway 152 is popular because it is the only way. It's the only road east from Silicon Valley.

Another discovery - in California it turns out that something called a highway can also have traffic lights... Windows down, by now we are more or less used to the heat.

The actual route taken matters less and less as detouring around a casino, we enter the foothills of the Sierra Nevada. Rolling hills studded with oaks. Windy roads, not the flat dusty straightaways of the Central Valley. Tall ridges revealing themselves to our east through the haze. As daylight fades into dusk, we're just a few miles from the Wishon Point campground at Bass Lake.

We're here to ride the Sierra Vista Scenic Byway. Beautiful, uncrowded, no services. Three days, camping and carrying food.

Leaving the structure of SuperTour was hard. Didn't want to cook, didn't want to sleep indoors. Definitely didn't want to shop. Trapped in suburbia.

Truth be told, camping and biking together sounds like a bit much. But I'm up for a good escape. Ride new roads with new people. Try out my new backpacking stove. Sleep in a tent under the Summer Triangle.

Our campground comes with a view of the lake...and a blue moon, one night past full, shimmering on its dark surface.

Sunday, August 26, 2012

Light within me, light within you

Monday I went to yoga.

I went to yoga, the usual class and teacher. This took courage as I was carrying around a negative experience from several weeks before.

That day she had stood behind me and told me to pivot my quad muscle backward (how on earth?) and narrow my stance. To protect the knee. A pose I've done hundreds of times, she was saying I was making the most basic mistake. Trying too hard, like a child.

I said I haven't been to yoga for over a month and my hips are really tight. She didn't care.

A former dancer. Injured and deformed, slightly bitter. With her standing there I adjusted my foot and tucked my tailbone. My hip burned and under her critical eye I smouldered. A huge effort to get to your tiny, monotonous class. You don't even care.

Yoga really helps my shoulder and neck. It's reliable and does not cost $175, unlike a visit to Dr. F. After an hour that tightness and nerve pain on my right side is gone. I can breathe. So once a week I go for 1 hour and 10 minutes. The movements are repetitious and my mind hops all over the place, like a monkey. It's not easy.

A larger issue: boredom. Despite those pesky issues with executive function, I need to use my brain. Intellectual stimulation. Meaningful work. Human interaction.

What that looks like for me now, I don't know. Once in a while I spot myself in the mirror mid-pose, like side angle or side plank. I think going through the motions. Exaggeration, not nuance. A clown doing mock poses. All the stuff I'm going through, can't even hide it and be normal for one hour.

That encounter was more than two weeks ago. At the end of class the teacher announced there would be a substitute for the next 10 days. The sub was very calm and neutral and wore a pink top.

Then the regular teacher was back, brown from the sun and relaxed. She even cracked a few jokes. Despite my fears, class went smoothly. I made it through another hour and 10 minutes. She called us back from shavasana in the usual way. She asked us to sit quietly in a comfortable position and take a moment.

And then she said something completely new. Savor this moment. In this moment you have everything you need. For once you do not need to go anywhere, do anything, you have everything you need.

The monkeys stopped. I breathed and sat. I felt exactly what was there, nothing more and nothing less.

I will die some day, I am deformed (like her), I make mistakes and find my way.

The journey is enough.

Oh, that strange TBI planet

What if you could explore the direction your life would take before going there? Dip a toe in, figure out what you were in for...

After all, someone has to drive one of these...

Going into this, I wish it had been possible to orbit the mTBI planet for a few days before landing.
I would have assembled a team to explore the surface. Report on the landscape and its inhabitants. 

Today on the bridge at the kitchen table, lacking both a spacecraft and willing explorers, imagine my delight in finding that report on the Internet. A team from the NIH has already been down to the planet surface! They give an overview, rich with links to research articles. And I can buy the Starbase Fighter on Second Life for $4.13...

Hang onto something stationary, because the NIH report validates many of my observations and experiences. As revealed in the batter that will become Mary's birthday cake, something is a little haywire on the TBI planet...

What are those strange structures?
The Introduction talks about blunders and cognition traps that previous explorers fell into:
The deficits produced by mild TBI are frequently more subtle, less often recognized, and more contentiously debated than are those resulting from severe TBI ([ref]. Given the large number of persons that experience mild TBI each year, it is indeed fortunate that the majority of these individuals recover fully within the first year following TBI. However, a nontrivial minority of persons with mild TBI, with estimates ranging between 1% and 20% [ref], will develop persistent cognitive, emotional, behavioral, and physical impairments that extend well into the late (> 1 year) period following TBI.
Functional MRI (fMRI) studies demonstrate that mild TBI produces abnormal allocation of memory processing resources in the acute post-injury period even among persons whose objective neuropsychological performance appears relatively normal [ref]. Such abnormalities may underlie the subjective experience of difficulty with memory even where neuropsychological performance is within the normal range.
The findings from neuropathological, neuro-physiological, neuroimaging, and electrophysiologic studies of persons with mild TBI suggest that the traditional view of these injuries as neurobiologically trivial requires serious reconsideration.
In plain language, mild TBI is a big deal for some people. Symptoms can linger for longer than a year. Memory changes not detected by neuropsych tests can be significant.

How many of us are living with these cognitive changes? Mild TBI is underreported, so statistics are hard to come by. For a low estimate, try 1.7 million traumatic brain injuries in the US every year. Three-quarters of those are mild TBI, which leaves 1.275 million. Of those mild TBI cases if 90% resolve on their own, that still leaves 127, 500 people per year with lingering symptoms.

They go on to cite a study that shows malingering is "relatively uncommon, if not frankly rare". "Malingering" is the medical establishment's word for faking symptoms to get disability and insurance money. After a few doctor visits you would have the opposite impression. In not so many words the last neurologist I saw accused me of it. In fact, every professional I've seen for help with TBI or whiplash suggested malingering at one point or another. I was either making it up or my symptoms were not caused by the accident. This guy was the sole exception.

The NIH expedition was 7 years ago. Since then nearly one million Americans have been told we're not credible. So, when do you think the neurologists and neuropsych folks will catch up with their reading...?

Friday, August 24, 2012

Gaming TBI

Two years after the accident, I got lucky. By chance I found a neuropsychologist who knew what I was going through.

Well, really, when we talk about chance we also have to talk about repeated phone calls to the head of the Neuropsychology department at Stanford (because she's a busy person). And her patience in finally giving me a few minutes of her time. One of the people she recommended was this guy.

There are two types of neuropsychologists, the ones who treat people and the ones who collect data and testify in court. He was the first kind. Or, he was some kind of hybrid of the two but with empathy. He was the first and only one who actually suggested things I could do for myself. To recover more fully. Self-help!

As you may already know there's no official treatment for TBI, once the acute phase has passed. Why medical professionals don't recommend self-help like exercise, diet, music, cognitive rehab, is one of the mysteries that can't be explained. But they don't. They don't even mention it.

This guy did. His main recommendation for me games. That's right, video games! Maybe  for these reasons:

  • increase cognitive processing speed 
  • help spatial ability
  • improve motor coordination and reaction time
without fear of failure. Because one thing we TBI survivors do a lot of, we mess up. In front of the rest of you.

It was a good news, bad news moment. On the one hand, great to find someone who actually got it. On the other, no freaking WAY was I going to turn into a gamer. I mean, anyone who knows me would know that. HATE staring at a screen and doing virtual things, like my nephews. Absolutely the opposite of being outside or interacting with real people.

He thought I should get a Wii Fit. A WII!!

So I ride my bike madly,  going down hills as fast as I can manage, dodging rocks and potholes and telling myself that survival is like a video game. Packing and organizing for these trips is like a video game. Push it. Push it.

I never doubted this guy, but here is some research that backs up what he's talking about.

If you're into video games, good for you. If not, find some other activity that helps with the above.

Monday, August 20, 2012

In slow we trust

It's the end of summer. Some schools started up last week, the rest start next week.

I'm adrift and lazy. Needing structure but not the formal, didactic structure of school. Feeling stifled in yoga class? Maybe not the time for a degree program at Stanford. Not even sure what I'm good at now.

So what about today? An Underachievers Anonymous meeting?

A dinner invite. Ride out to the coast and be in San Mateo at 6:30. Yeah.

Motivation may be a problem, but at least SuperTour gave me fitness. Old La Honda is painless in the middle ring. Not fast, but no problem. Only 3.3 miles, after all. Near the top a rider on his way down smiles at me and says 'almost there'.

Of course it's, like, my 378th climb up Old La Honda and I could pinpoint where I am on the hill with the precision of a satellite. I just smile back.

At some point on the descent, only hills and sky and not a single man-made thing in sight, troubling thoughts start losing track of me. I'll just keep turning the pedals until everything gets clean.

The plan was ambitious but after a late start we are heading straight toward a thick marine layer. There's still heat inland, pulling a layer of moisture and coolness right to the coast. At San Gregorio it's blowing and almost cold. It's 3:12pm. Half Moon Bay is not looking likely.

The Bike Hut on Tunitas is a good place to make the call. The folks at Potrero Nuevo Farm built a small shed for cyclists, with water and coffee and snacks. It opened 3 years ago just in time for the Tour of California to roll through. The hut is becoming a sort of an informal shrine.
Bike love at the Bike Hut

Tunitas, 2 hours including descent. Plus at least 45 minutes from Robert's Store in Woodside to Mike's house. It's sunny but the cloud line is right here at Tunitas Creek. Doing the math....and heading back up the hill.

Someone calls this part of the world Slowcoast. It's true that time feels different here. At least for me; who knows about the frantic drivers on Highway 1 with the luggage and bikes strapped to their cars. Today the past feels unreal, like a dream. Riding these roads so many times, familiar terrain gets worn away and becomes unfamiliar again.

Edge of clouds, Tunitas Creek Road.
Tunitas is an opportunity to do more mental cleaning and ponder what new experiences might be in store. The afternoon light is diffuse and yet strong too, permeating everywhere, even the forest. Only this time of year and this time of day can the light reach deep inside the redwoods lining the creek.

The steep section is 2 miles long, like it always is. Being fit and at peace I don't even wonder where the top might be until the last 100 yards. The oak tree marking the end of the big effort is unmistakeable, limbs split in a wide Y.  

The Y tree at the top.
For now, it does just fine as a goal.

Friday, August 17, 2012

2 weeks of not losing anything

Simple cures for memory issues...
Today something new, a TRX class. There were only 2 of us so it was almost a personal training session. You go from one exercise to another with no break in between. It was a good workout, one with sweat.

It's easy to tell I haven't been blog posts! No motivation to ride. No structure = nothing happens. Still getting the body clock back on track. The amount of light at this latitude in mid-August makes it hard.

Also, it's been kinda hot and lazy.

How did the brain like SuperTour? For 2 weeks afterward, it was great. Climbing those 15-mile hills pushes the blood into the head nicely. Success! Now it's just good, and fading.

Honestly it's a little tough to tell. You can sympathize with the medical establishment a little. A brain injury doesn't really feel or look like anything, not in my case anyway. What's telling are the little slips. Those little lapses I run around and fix.

This morning when I got my workout bag for the TRX class, something was missing. The combo lock, normally on a shoulder strap. No clue the last time I touched it. Had to leave without it. But it's really hard to stop wondering, where could it be?

I asked at the gym desk. The guy held it up. My lock!

Thursday, August 16, 2012

Imagination of the heart

If you or someone you love has a traumatic brain injury, you're going to need help. That's the unfortunate truth.

The bad news is you can't just go to the doctor and get treated. Some homework required. The good news is these folks seem to know what they're talking about. Need a primer on TBI? You could start here.

The folks at SBI seem to get it, too. Despair not. In my experience, the people who work every day to rehabilitate TBI survivors, and the lawyers (yes, the lawyers). They seem in touch with reality. They can help. They have empathy.

On the other hand, the medical profession! A cognition trap is a rigid mental framework that impairs perception. A barrier.
  • Exposure Anxiety: The Fear of Being Seen as Weak
  • Causefusion: Confusing the Causes of Complex Events
  • Flatview: Seeing the World in One Dimension
  • Cure-allism: Believing that One Size Really Fits All
  • Informania: The Obsessive Relationship to Information
  • Mirror Imaging: Thinking the Other Side Thinks Like Us
  • Static Cling: Refusal to Accept a Changing World
Take your pick! Pretty much all of these could apply to a recent visit of mine to a prestigious medical institution.

Blunder is about cognition traps, and how to avoid them. It's a little too think-y for me but if you want to know why your TBI treatment plan feels a lot like the Iraq war, definitely read this book.

Especially like how a scholar focuses on an unscholarly cause of massive errors:
Cognition traps occur for many reasons but two frequent and interconnected causes are a lack of empathy and a limited imagination. Imagination permits us to perceive the world in multiple dimensions. It lets us speculate how life could be different for ourselves and for others. It enables us to consider values and behaviors at variance with our own without rejecting them out of hand. If imagination resides in the mind, empathy is imagination of the heart. 
-Zachary Shore

Tuesday, August 14, 2012

40 minutes with your prefrontal cortex

Reading How We Decide. The chapter "The Uses of Reason" tells the story of United flight 232. It's a famous story in aviation circles.

A DC-10 airplane loses the engine in its tail, then loses all hydraulics. Hydraulics enable control of the plane. Almost no control in the cockpit can be operated without hydraulics. The right wing keeps tilting down. The crippled plane follows a sine wave trajectory toward earth.

For about 40 minutes four pilots struggle to descend and maneuver the airplane so it can land. This situation is completely outside their experience and training. It is not supposed to happen, literally a one-in-a-billion situation.

They work together to come up with ideas and scenarios. A type of processing that happens in a specific area of the brain, the prefrontal cortex. The pilots know the odds of surviving this situation are not good. In fact, no one has ever survived a loss of flight controls. 296 people are heading toward a cornfield in Iowa at 250 miles per hour. They can only use engine power to maneuver the plane, which also means they can't slow down. They go against their instincts to apply thrust. By keeping cool and letting reason guide their choices, together they reach the best possible outcome.

A few thoughts:
  • On a much smaller scale the accident I was in demanded the same kind of processing. None of us had experienced a dust storm like the one that day. The driver had no prior experience of the situation. When did it become riskier to keep moving forward than to stop on the freeway?
  • When we did stop, the prefrontal cortex was where my head hit the seat.
  • Listening to Denny Fitch, how can you fail to be impressed by the amount and quality of training pilots receive? That's how they problem-solve. They practice what to do when things fail. In contrast, very little training is required to drive freeways at high speeds. 
  • A new collaborative model for decision making was used. It's been rolled out widely since then. The guiding principle is, it takes every bit of human capital to manage a crisis. Previously, the captain made all decisions.
  • Insurance companies, doctors, colleagues, lawyers, friends, family. There are lots of ways we humans fail each other. It's helpful to watch Denny Fitch: humble, intelligent, professional.
  • The four pilots survived. They all suffer from survivor's guilt. Even though they did their best, they felt responsible. Guilt probably lives nearby, in the orbitofrontal cortex.
After the fact, the flight data went into a simulator and 2 expert pilots tried for a better outcome. Each  pilot took 29 attempts to even get to the runway without crashing. The flight crew of United 232 had only one attempt.

A new favorite topic

Reading How We Decide by Jonah Lehrer. It was hard to get started at first, now I can't put it down.

The book basically presents the latest neuroscience research in story form. What we have found out in the last few decades about how the brain works.

Is this to gain insight into my own brain and my own recovery? Not really.

Every so often someone points out in no uncertain terms that cycling is a dangerous activity. The general idea is no one should ride a bike and expect a good outcome. It's irresponsible to recommend it to others.

Sometimes a finger wag comes along for the ride. I'm a child whose logic needs supervision. Who has colored outside the lines or left toys outside. In these cases the speaker implies that they only do (and recommend) safe activities. The superior path.

During a recent TBI presentation I was questioned on bicycling as therapeutic activity. I said the physics of car accidents is much riskier, due to greater mass and higher speeds. Relatively speaking, cycling is as safe as riding in a car. The moderator gave me a long, thoughtful look then moved to a new topic.

The facts are that my TBI came as the result of being in a car, and fully half of TBI cases are caused by car accidents. Whenever I get into a car now there's a heightened awareness that this could end badly. Why do I see that risk so clearly while others drive right on by?

Wanting to know more I plugged "risk perception" into Google. There's a new book, How Risky is it Really? Why Our Fears Don't Always Match the Facts. Here's a blog entry on the topic. It's due back next Saturday at the library but in the meantime, I'll start with How We Decide. Its neighbor on the shelf was Blunder (Why Smart People Make Bad Decisions) which also came home in my bag.

Maybe becoming an armchair neurologist is the answer. Maybe it means I'll never have to see a neurologist again...

Sunday, August 12, 2012

Flavonoid of the month

Flavonoids, substances found in some plants, probably help memory function. The flavonoids shown above came from our year-round farmer's market.

Dark chocolate and cocoa also contain flavonoids, unless they've been removed.  There's no dark chocolate in the photo because it's all gone. None in the house.

Don't know what could have happened to it!

Friday, August 10, 2012

An arm or a leg

It took 3 years for the military and Ben Richards to agree he had a brain injury. At first he soldiered on and did not seek help. Then the VA fumbled the ball for years, behavior that would never be tolerated in a soldier. Major Richards says it would be easier if he had lost a leg.

He left Iraq with arms and legs still attached. No visible injury. So his story is the virtual record, the only way to know something is missing. It's humiliating to tell it. He sees telling the story as an act of service, to bring awareness and better treatment for vets with TBI.

Fly your saucer

Got a big kick out of this guy in Puerto Rico, and the dream home he designed and built. Especially the light fixtures made of old car parts...

On Route 66 the theme of reuse kept popping up. Folk art by the side of the road, bits of this and that forming something new. Graffiti on an old concrete shell, now an art installation. A ruined house in a ghost town, inhabited by someone.
Boxcar to house to ruin, to makeshift shelter
Route 66 as a route to travel, not to get to LA but to have an experience. The road itself reused as a stored cultural memory, referenced again and again.

Neurologists say all kinds of things to people with TBI. Most of dubious scientific value. Some downright harmful, aimed at supporting them not you. When one said to me "Time to retool", it had the ring of truth. 

As survivors of brain injury we have no choice. We need to figure out how to reuse what we have, make that into something useful. It may be a temporary thing until the brain heals itself. It may be a lifelong thing to compensate for what's different now. It might be both.
Raw material for your next project!
Whether to keep my job or to function independently and have some quality of life, a reuse project is a struggle. In our consumer culture we expect new goods shipped from China (to the Port of Los Angeles or Long Beach, moved across the country in metal Maersk containers on the Burlington Northern & Santa Fe Railroad). The old stuff, we throw away.

 I am 47 years old. Even with my old brain layout, who is going to hire or value me?

Old and new, where they intersect.
On the other hand, all those challenged towns on Route 66. A dollar store in almost every one...

Monday, August 6, 2012

I-5 with a madman in a death machine

Unlike Jerry Seinfeld, Jim is basically the World's Best Driver. I'll give him that.

That thought was completely absent from my mind as we hurtled down I-5 at 75 mph. It was more like 'how do I get this madman to stop pressing buttons'?

Driving this wonder of German engineering and electronics was not enough. No, Jim's fingers just couldn't stay away from the buttons. For hours it went like this:
Jim: What's this one do?
Me: No clue, lemme look it up (gets out manual).
Jim: (presses button) Doesn't do anything!
Me: Jim! Quit pressing the buttons! They do stuff!
Jim: Well, how ELSE are we going to know what they do?

What Jim wanted more than anything in the world was a real-time display of gas mileage on the console. The default is a running average. Jim wanted, no, absolutely needed us to rejig the display to show miles-per-gallon, this very moment. The closest he could get without help was resetting the trip computer. Over and over.

Of course, I had the manual. But after a few rounds of this game I wasn't telling. The procedure was too complicated and further distractions seemed unwise.

Somewhere around Williams a loud beeping noise interrupts the blasting music. Jim looks at me, startled. I turn the music all the way down and glance at the console.

In a button-pushing frenzy, Jim set an alarm for when the car exceeded a certain speed. The alarm had just gone off.

I held off for a second (or two) before telling him.

Late to the party

At home I found the SuperTour 2012 overview map up on the computer. Danny was following along...

A little late, but here's some context on last month's ride, SuperTour.
  • Usually 30-50 riders
  • 12 consecutive riding days
  • Different route each year, mountainous terrain
  • Camping, with a cook and great food
  • Breakfast and dinner provided, riders can make and carry lunch
  • Gear carried in a rental truck
  • Only emergency mechanical and medical support en route
The emphasis (according to me) is on fitness and self-sufficiency. To ride SuperTour you need to be able to ride back-to-back very hilly 100-mile days, sometimes in heat. Carry food and water, fix your own flat tire. Improvise in remote territory. Put up your tent every afternoon and take it down every morning. Stuff the sleeping bag in its stuff sack at 5:30am, while still warm. So there's no temptation to get back in after breakfast...

Before you try to sign up, know that SuperTour doesn't really work that way. Who you know and the rides you've done open the door.

SuperTour is led by a group of volunteers, most of whom also ride. This is the main difference vs. PACTour. Volunteer does not mean unprofessional or disorganized however. As a project, SuperTour is complicated and hard work. See what a group of underemployed engineers can accomplish!

You'd be impressed too by their resumes. The maps and GPS files come from someone with an MSEE from Stanford, for example. There's a joke in there somewhere... More coffee from the Javenator, please, to properly suss it out!

Sunday, August 5, 2012

Things that are round

Bike sculpture, Sisters OR.

Farm sculpture, Glen Ellen CA.

Cake sculpture, home.

My sister made a birthday cake from scratch! Chocolate (made with buttermilk) with pink cream cheese icing. Mmmm, moist and delicious!