Wednesday, July 31, 2013

What it looks like

Been biting my fingernails a little...
This is a cyclist in the middle of a 1200K event. The 1200K is actually a 1400K, London-Edinburgh-London. The cyclist in question is Tim Houck, brave companion of the 400K and GRR support crew.

In both directions there was a long pause after Pocklington. Clicked Reload on the browser, no further information. You wonder if the rider is still in the game. Maybe he's sleeping. Maybe he crashed.

Normally I'm the one riding so this is an unfamiliar vantage point. And the spreadsheet makes it all look so straightforward and simple. It definitely is not!

It's an epic adventure...

Monday, July 29, 2013

One day

If you had one day, one single day on this beautiful planet what would you do? How would you spend those moments?

Would you dig into a slice of fresh apricot tart? Taste the care and love someone put into it? The blend of sweetness and acidity, an alternate form of sunshine?

Get outdoors for a walk, or maybe a bike ride? Look up at the blue sky and wonder that it's not a solid thing and not even blue yet without it, we would not be able to live here?

Reflect on contradictions, things that are messy and imperfect, such as friendships and chain rings? And the concept of good enough? So utterly functional and enabling you can't imagine life without them?

In the last four-and-a-half years, there have been plenty of losses. Since leaving work, way too much time to reflect on them.

People who help survivors of TBI use the metaphor of earthquake followed by tsunami. There is the physical event that causes the brain injury and often other physical injuries as well. Then the aftermath: social, economic, emotional, psychological. We use the word tsunami to represent an impact too large to quantify. Of scale and scope and duration that is unexpected, way larger than normal. Almost too large to comprehend.

The gains are much less obvious, more elusive. They must be hunted and stalked and lured out of hiding. Bella can demonstrate. Like this morning, at the window with a poor, unfortunate, former bird. We turned her away. No, you can't come in here with that!

Route 66, a journey definitely helps uncover the good stuff, the gifts of this process. It turns out there are so many of them. They're everywhere. One that keeps knocking on the window is, life is finite. Each day is important, a challenge. Pay attention, right here right now. There's nothing else.

Writing, so difficult and helpful. It demands that you organize your thoughts. Can't just zone out - may have to write about this later! No idea it would be so worthwhile. It's great to read and write and have discussions with people. Blog is my co-pilot!

I would spend a few minutes on sharing this:
  • At any point in time, the human beings in your life are worth more than their cognitive functioning. Think about that.
  • There's always potential to function better. Always. We are never done.
  • Each brain injury is individual and unique. Even if you fully recover, expect a tsunami of hardship and loss. Grab something and hang on. Never give up.
  • If you want to recover you have to push yourself. It doesn't just happen.
  • With a (safe) program of physical exercise, you become a powerhouse for your own recovery. This is the single most important thing, besides not having another brain injury. So, do it.
  • Educate yourself! All the latest information and research will help you survive the dismissals and condemnations from the medical establishment. Those folks can't help much. Prepare to ignore what you hear from them.
  • No relationship will be unaffected, not a single one. Surround yourself with people who are wholly, truly supportive. Such people are rare, which is actually OK.
Then I'd go for a ride, and maybe get some lunch ;-)

Thursday, July 25, 2013

The Brain That Changes Itself

One day I walked into a room at the Dojo and sat down. Someone was already at the table, on the opposite side, a guy who didn't appear totally thrilled at the prospect of sharing his space for the day. There was relief when I didn't need much real estate, and we left each other alone.

Over the next hour it dawned on me that the other three humans in the room might all be coworkers, working on the same project. Still, not leaving. Table space with quiet in a room, not easy to come by at the Dojo. Not easy at all.

Technically it's all public space. Yet lots of projects need to fly under the radar. There's some tension around those two things. And that's how I met Ahksar, who eventually asked what I was working on. Then he told me about this book.

After Mirroring People and the thrill of cutting-edge neuroscience research, I was a bit skeptical. Anecdotes are less powerful, less generalizable, less useful as hard science. Forget about the feel-good, just give me some functional progress! After a few chapters, my patience was rewarded. That's when I realized that anecdotes are the only way to tell this story. We have been engaged in a shockingly basic debate over the brain's ability to heal itself.

From the 1700's to about 25 years ago, the medical establishment viewed the human brain as a fascinating machine. They discovered that damage to specific brain areas caused loss of specific mental functions. This theory became known as "localizationism", tying mental functions to a dedicated physical neighborhood in the brain. It makes me think of the diagram of a steer you see at the meat counter, and the various cuts of beef labeled on parts of the animal. But the theory outran the data, morphing from
a series of intriguing correlations (observations that damage to specific brain areas led to the loss of specific mental functions) to a general theory that declared that every brain function had one hard-wired location-an idea summarized by the phrase "one function, one location," meaning that if a part was damaged, the brain could not reorganize itself or recover that lost function.
Until recently, localizationism was so entrenched in the medical community that research to disprove it was subject to hostility and ridicule. Discussing and researching a contrary position could be hazardous to your career. And of course, it painted a bleak picture for survivors of brain injuries. You start life as an infant with a certain number of neurons and it's a long slope downward from there. You might lose them to injuries or disease during the course of your life and then as you age function declines and then you die.

Yet examples kept surfacing of humans who recovered lost function after strokes, congenital abnormalities, and injury. And research kept happening. A couple of renegade scientists, Paul Bach-y-Rita and Edward Taub kept advancing the theory of neuroplasticity. They and others showed that
the damaged brain can often reorganize itself so that when one part fails, another part can often substitute; that if brain cells die they can often be replaced; that many "circuits" and even basic reflexes that we think are hardwired are not. One of these scientists even showed that thinking, learning, and acting can turn our genes on and off, thus shaping our brain anatomy and our behavior
While reading the examples in this book at some point I made the connection that most of the doctors I've interacted with were schooled according to the theory of localization. By virtue of when and how rigorously they were trained, they had to embrace it. When it was discovered to be wrong, that the brain is actually plastic and it changes according to its environment, they were already practicing medicine. When you really, really like the feeling of being an expert, it's tough to give that up. It's easier to tell wrong things to patients to get them to go away.

So, that was definitely a feel-good moment!

More excitement when I read about the implications for rebuilding brain function. Edward Taub, a neuroscientist who worked with monkeys, developed the technique of constraint-induced (CI) therapy. If your left arm is damaged from a stroke and needs to recover function, the right arm is constrained using a cast and a sling. The left arm is then forced to figure out how to execute instructions. It is a long, arduous process but it does work. The brain rebuilds and recruits neurons to recover use of the left arm.

The brain responds to the requirements of situations it finds itself in. To recover function, you have to plunge into uncomfortable situations that you have lost the ability to deal with. Avoidance only tells the brain that it doesn't need to do those things any more.

This, of course, is one premise behind Route 66, a journey. After the accident my comfort zone was surprisingly small, very basic. It's truly frightening and humiliating to step outside that comfort zone. But that's exactly what has to happen. When it comes to brain function, use it or lose it.

It also confirms that torturing myself for a month in language school was completely, exactly the right thing to do after a brain injury. Not to mention slogging around on a bike, relearning what navigation feels like.

There's a story behind how a brilliant maverick like Bach-y-Rita got into the backwater of rehabilitation medicine:



Paul Bach-y-Rita - Neuroplasticity from Dr Bob on Vimeo.

Something was still nagging at me. Why, only six months after the accident, did Dr. H. inform me "the time for physical healing is past. The time for emotional healing has begun"? There has been so much research that shows otherwise! He's a neurologist who specializes in strokes. He's a smart man. It's possible for stroke patients to make incredible recoveries years after their injuries. The ability to recover function does not go away.

I don't know for sure but Dr. H. probably did his residency in neurology 40 years ago. Dr. L., the rehabilitation doctor at Valley Medical, is probably from the same era. Localizationalism was the accepted, unquestioned truth at that time.

Can't help but notice it also fits a lot easier into 15 or 30 minutes, telling a TBI survivor that they're screwed. Rather than working with them for 3 years on a journey to rehab their brain.

According to Marco Iacoboni, there's a saying among neuroscientists to the effect that progress is made one funeral at a time. In other words, for a rapidly-changing field like brain science to progress, the previous generation of neuroscientists has to die, taking their precious long-held outdated beliefs with them.

The author of The Brain That Changes Itself would say this is a downside of brain plasticity. Once we are taught something and we believe it's true our brains adapt, holding tightly onto that belief. Long after it has been disproved. Long after it's outgrown its usefulness.

For now I'll settle for the validation and hope of this book!

Friday, July 19, 2013

Red group, green group

We have now made the dividing into the 'red' and the 'green' group. You find it in this link:


Vi har nu opdelt deltagerne i den 'røde' og 'grønne' gruppe. Se dem her:



 
Med venlig hilsen / Best wishes
Karsten Christensen
Audax Randonneurs Danemark


Super Brevet Scandinavia happens every four years. For a long time it was 35 riders, then it was 50. Now it's 100. Randonneuring is the sport of the new millenium!

This time the hundred spots filled up right away in January. The window opened again in February (I missed it). Late cancellations in May gave me a place.

The reason I wanted to do this ride and the restrictions on how many cyclists can ride are in fact, connected. Unlike most 1200Ks, SBS offers formal support. They arrange everything; no need to scramble like on Paris-Brest-Paris.

Four nights in a row there will be a hostel bed with my name on it. A bed!! There will be a shower - a shower! - at the end of each day's ride. Like magic my drop bag will show up. And yes, there will be food! Breakfast and dinner for four days. The number of cyclists that Audax Randonneurs Danemark can support in this fashion is...100.

There's a catch. No place along the way in rural Scandinavia has 100 beds for cyclists. Starting with this edition, SBS has split itself into two groups. 70 cyclists do the standard thing (the green group). At the beginning or end of the day 30 cyclists do a slightly different thing (the red group). The differences are minor and the vast majority of kilometers are ridden together.

My name's in the red group! Cancel that reservation at the hostel in Frederikshavn. Hopefully they have places at the hostel in Saeby.

Time to start thinking red.

Thursday, July 18, 2013

Blue Shield takes one for the team

The phone rang, and it was not one of those robocalls pretending not to be a telemarketer. It was a real human being from Blue Shield.

In a nutshell, their bad. I can have the MRI.

A longer version:
After the appeal to the state Board of Managed Health Care, an independent radiologist actually looked at the medical records. The evidence of conservative therapy that Blue Shield outright refused to look at. He finds the MRI to be medically necessary. Yeah, this is good news!

If your insurance company ever denies care or coverage here is what I've learned:

  • The appeals process is a sham. Insurance companies never overturn their own decisions.
  • They are allowed to ignore evidence when denying claims.
  • The letters you'll receive will make erroneous claims based on incomplete data. This is known as "an opinion".
  • They have medical professionals on staff to write these "opinions". In my case it was a Registered Nurse Practitioner claiming no MRI was needed.
  • You have to appeal to the state to get results. The other steps are just a means to an end (and a waste of your time).

Mirror neurons, anyone?

Wednesday, July 17, 2013

Diablo caliente

For today's ride, something totally different - Mt. Diablo. A climb that Tanya does every week. Today we'll encounter a whole set of weekday regulars. Some of whom recognize each other. There is a relaxed summer vibe. They're generating their own happiness and calm.

I'm ready for some of that. Getting here involves waking up at 5, catching a train to Millbrae then two BART trains to Walnut Creek. Maybe this is the reason I've climbed Diablo exactly once.

That was fifteen years ago and from the other direction, from the south. The easy side. From descending the north side I remember long steep pitches. Definitely harder.

Climbing a mountain does something to your head. It changes what's in there. You start out thinking, wondering about a certain set of things. Whatever task you were engaged in before getting on the bike. Grim misery on the faces of early morning BART commuters. That annoying comment someone made that keeps coming back to you, days later. Overdue library books. Whether you'll ever catch up on blog entries. A friend or family member who's always doing the same damn thing without knowing it. Whatever it is that makes people drive the way they drive.

And then with no warning after a few minutes those thoughts just go away. They evaporate into the dry air. What's left is a blank slate. You push and watch the landscape and from time to time a thought might form. Vaguely float around for a while. Then move on. It will not stay long and it will not cause trouble.

For contemplating topography there is no better place. Diablo is one of those mountains that stands alone, higher than anything else around. Even though it belongs to the Diablo Range, which includes Mt. Hamilton and stretches a hundred miles south. As far south as the road to Mercey Hot Springs. How can a solitary mountain be related to others far away, that's a mystery.

If there is one thing to learn in climbing hills and mountains, it might be that natural features are irregular. This climb is 3553 feet; the other side is just over 3100.

In this way (and only this way) Diablo is exactly like every other mountain. Just like Hamilton, a 22-mile gradual climb from the west, with two short downhills. From the east 6-plus relentless miles of granny-gear pushing.

As a new cyclist this surprised me and somehow it still does. The earth is not regular or symmetrical. In the Santa Cruz Mountains roads vary so greatly that there's no point in even talking about pattern or template. And no one does. We revel in the variations. We pick roads to match whatever we need that day.

When Tanya hears about the asymmetry thing she nods and says "Threes and fives. Nature works in threes and fives." Oaks cluster near the road; we both automatically look toward the branches and their leaves.

Forty miles east and south there's the smoky outline of Hamilton, two (irregular) peaks not just one. A huge gap of low country in between. Two (irregular) valleys, Amador and San Ramon. With their sprawl of communities barely visible. Over the hills, San Francisco, a white architect's model version. To the north, the dark hulk of Mount Tam. Fog pouring through the tiny mouth of the Golden Gate, sucked inland by the heat where we are.

Tanya usually gets an early start; today she waited for BART. Now the warmth is pushing us uphill, toward cooler air.
The last hairpin brings the sweeping views north to the Delta, east toward the Central Valley. A visitor's center sits at the summit, a graceful old stone building you might call an "observatory". Inside, there's a gift shop and a small interpretive exhibit. They've exposed the fragmented bedrock that is really the peak at 3864 feet. I rub it with my shoe.

Outside, swarms of dragonflies are hovering and gliding at the summit. There must be many hundreds. Their bodies are almost weightless, transparent, visible only as outlines moving against a huge scenic backdrop. The dancing is not random and not orderly either. I wonder if someone understands it. According to Tanya they ride the thermals to higher elevations on warm days. 

Maybe to help them stay cool. Or maybe just for the views.

Monday, July 15, 2013

Things could be worse...

SuperTour is going on right now in the Sierra Nevadas. According to the National Weather Service people the heat is not too bad. Feels kinda funny to not be there.

On the other hand...

Friday, July 12, 2013

A jump start


I...don't...want...to do...anything.

Coming up is the 2 Brevet Weekend with San Francisco Randonneurs. It's an organized, self-supported affair. They tell you when and where to show up; all good. Because when someone tells me when and where to show up, stuff actually tends to happen.

In March instead of showing up for a 300K I showed up for SBI. A 300K is still needed to qualify for SBS. This is the last local one. So it will be 300K Saturday and 200K Sunday. Assuming I get myself there, that is.

We're in that painful place of zero motivation when tasks have to get taken care of anyway. This process is like being woken up from the soundest sleep you've ever had.

Or pushing the car with a manual transmission and a dead battery. Coasting heavily down the street with no power. Putting the transmission in second gear, popping the clutch. Hoping the engine remembers what to do.

Not the same as being fully charged but short-term it does work.

Tuesday, July 9, 2013

Ticket Tuesday

For someone who is supposedly going to Denmark, there are no external signs. No packing list. No navigational setup. No airline ticket.

No physical readiness to speak of.

This has been nagging me since leaving home June 21st, maybe since officially getting into SBS June 9th, and heck maybe since fixing on Super Brevet Scandinavia before getting in. It's dread, and avoidance. Logistics are really hard and it takes relentless focus and luck for me not to screw up.

When I decided to go for SBS the goal was to escape everything going wrong and sideways. Do a lot of exercise and blast on through. Not bring it all down on my head!

Since the accident I've learned it's important to be selective about airlines. They need to be the most functional, least sadistic ones. Yes to SAS, Air France, Air Canada, Virgin Atlantic. Maybe to Lufthansa and KLM (they fly to the wrong cities). No to United, American, Delta, US Airways, and many more.

The original check of flights and fares showed prices were high. Availability seemed low (1 seat(s) left at this price!) No seats on the nonstop to Copenhagen. It was bouncy-bouncy through O'Hare and JFK. Places that tend to have thunderstorms in August.

Dealing with airlines and airport security, this should be one of the diagnostic tests for mild brain injury. Airlines are completely unforgiving. You can't be unsure of one single thing or make one single mistake. Also, with tickets and baggage there are those sadistic games to extract the maximum amount of money out of you. And there's that stuff I always forget to put in the plastic bin on the conveyor belt. TSA likes to call me "Ma'am".

To minimize all this and increase my chances of a decent experience, I actually bought a Business Class ticket for $2800. Then got cold feet and canceled it the next day. People without income don't fly Business Class.

OK. Fares are lowest and seat blocks go on sale late Monday night - Tuesday morning. By virtue of nothing but being in the right place at the right time somehow I got this:


Yep, still wondering where the 1147 Euros are coming from. Yep, not quite sure how my bike box will be my only piece of checked baggage.

But I'm going!

Wednesday, July 3, 2013

Dog days

It's so hot that no one is doing anything. Including me.

The last 2 weeks I might have overdosed on adventure. And exercise, like two unsupported 300Ks. Feel like a slug. But I drag over to the Dojo for the air conditioning. Tuesday yoga, Wednesday Spinning at the gym. Trying to get back in the swing.

Then there's the book Mirroring People by a neuroscientist at UCLA. Madly reading because a Dojo buddy needs a book report for a Meetup on Wednesday evening. Ten minutes. Took the book along to Ashland but for some reason made very little progress!

Now I'm madly reading, trying to reach the halfway point. And rehearse the talk. This process really seems to wake up my brain. Taking in information, digesting it, then having to perform it for others. It makes me pay attention. It makes me care. And then I remember the material so much better.

Interesting the people you run into. This guy has a reading list of all the recent books on developments in neuroscience. There has been a lot of upheaval in brain science over the past 30 years. The discovery of mirror neurons is just one thread.

We have these special kinds of neurons in areas of our brain related to motor activity (movement) and planning and language. Mirror neurons fire not only when we act directly, but when we observe an action, or notice the potential for that action to happen. They used to think that perception, cognition, and action were separate processes in the brain. It turns out they're not separate at all; perception and action are coded in exactly the same way. Our brains are constantly modeling what we do and observe.

They're busy researching the implications of this discovery. Mirroring People does a really good job explaining the research that has happened, in a way that makes you think about what it could all mean. For instance they're pretty sure mirror neurons are how we develop empathy for other human beings. In observing people around us experiencing emotions, we model those emotions in our own brain and it's as if they're happening directly to us. Mirror neurons connect us to other people.

They're also pretty sure that mirror neurons are how we learn, by copying what we observe. Especially language.

This is fascinating stuff in the abstract. It also resonates with many of my experiences in recovering from brain injury.

  • Obviously, the endless stream of dysfunctional interactions with the medical establishment. How the people who are most on the hook to help are the least qualified to help. Partly because of a lack of empathy. Partly because this research happened after they left medical school. Partly because their egos think they know it all when in fact we have known very little. We're just starting to learn how wrong we've been about how the brain works. 
  • From the very beginning it felt like if I could just get out in the world and start forcing myself to do the things I used to do (like riding brevets), I would be able slip back into my old skin. You could call it (re) learn by doing. The research on mirror neurons seems to support this process. 
  • Learning and practicing language is like taking your brain to the gym.

We are just starting to know more. The book is very readable; highly recommend. It should come with a label though: Warning May Rock Your World.