Received Wisdom of Doctors

Don't believe it.

Some of the earliest advice given to me after the strokes* was to doubt received wisdom. I have found that advice to be good, for several reasons.

First, most people don't really get probability; that's why casinos work.  When something is classified as "very unlikely," it is important that the possibility still obtains: "very unlikely" is NOT "impossible." Recovery is possible.

Second, doctors don't know everything about the brain, although they are usually in authoritative positions. As much as we would like to get answers about our brain damage, and as much as we expect doctors to have those answers, they don't. I'm not saying that they're not experts, but research into the fundamentals of the brain is still happening. They don't have all the answers; nobody does.

Third, the physical brain and the insubstantial mind are related. They are not separate nor separable things. Some brain damage causes changes in personally, beyond the behavioral changes that are an inevitable consequence of having brain damage.

Fourth, recovery takes a long damn time. A lot happens that doctors never see, and rarely perceive. They often have too many patients, and are not geared to detect the slow, steady improvements that are a feature of brain recovery. By and large, our changes are not going to appear in blood, urine or even spinal fluid samples. A specialist might see you once in the first six months and never see the small daily improvements, or the hard work that goes with them.

Thus far, it is not possible to deny anything I've said. That truth should be enough for anyone. I'll speculate: The thought that recovery is possible is necessary, but not sufficient, for recovery to occur.

When we do not think recovery is possible, it is unlikely to occur. The brain evolved for efficiency: use as little energy as possible to perform tasks. Don't train both hands to be deft, stick with a dominant side, for example. This is antithetical to recovery** which requires that we do things poorly again, clumsily , slowly and awkwardly to learn how to do them competently and even well once more. When we don't think there's any point to doing things the hard way, then we don't and an opportunity for recovery, instead becomes further reinforcement for compensation. The thought that recovery is possible is necessary.

It is not enough, though, just to sit on your tush and think "I can recover!" to yourself. You have to do something about it. If you have brain damage, somebody, somewhere has said "use it or lose it" to you***. Recovery goes further than that, it requires that you force yourself to do things the difficult way, it is often tedious, and it mostly sucks. The alternative, inaction and stagnation, is worse. I'm lucky: the damage I have is not cognitive. I can fix physical things comparatively simply. I must do the work, though.  The thought that recovery is possible is not sufficient.

Medical professionals use phrases like 'very unlikely' with experience, compassion and precision. It was unlikely. Believe that very unlikely means impossible, and it will stay unlikely. I dare you, instead to give them the lie, be the exception, and change the statistics, because recovery is possible.

In an upcoming post, I'll give you more personal anecdotal evidence of recovery. It surprised me, three years on.

* By Nigel, who had had his stroke six years before. He'd left in-patient rehab (and been written off by insurance, therefore) able only to wriggle the toes of his afflicted side. He walked into my hospital room.

** Although it is consistent with compensation, the side of rehabilitation I largely reject.

*** If they haven't yet, they will.

Eidetic Memory?

Since having the strokes, I have enjoyed joking about some of the aspects of brain damage. It has been amusing (to me, at least) to jest that I don't remember names because of my brain damage, rather than the truth that I have simply forgotten. The ironic humor for me is that most listeners don't know if I am lying or not. I could be telling the truth, after all.

The month or so before I had the strokes is gone. I have no memory of it at all. In fact, I have repeated almost verbatim discussions of great urgency that came to the same conclusion, and were thereby resolved, in the weeks before the strokes. I know because I have the email chains. Conversely, if you are expecting me to respond to email you sent in September or October 2011, good luck with that; you are going to be waiting for a long time.

The joke is on me, though. Two and a half years on, and I suspect that my memory has taken damage. It may just be that the relative monotony of my life at the moment makes things harder to remember, or that I am simply getting older, but I don't think so.

In some circles of friends, my memory is notorious for being poor. That's always been amusing but slightly unfair: it is the indexing that has failed me; once triggered, the memory itself is clear and thorough. This experience is different, though.

I've found to my surprise that there are events, places and even people that I have no memory of at all. I was quite comfortable with the idea of a lost month or so: there is no way to magically encode the events that are gone into long-term memory. The prospect of not recalling things apparently at random is unsettling.

Memory is unreliable. That's why I chose to record how I felt on 9th September 2001 that day (TL;DR: I was there). I knew that my impressions of the day would change in the years since, but they're still there. That is the novel sense for me: memory that is not necessarily merely unreliable, but wholly absent.

It would be much easier if only boring things were consigned to the mental black hole, but that doesn't seem to be the case. Interesting people, places or events are susceptible, too. It may be that I lose things when I'm tired, or when I'm paying particular attention to something else, I don't know.

The best I can manage is to be consistent in my behavior. Happily I am less fickle than ever, so when I think I wouldn't have done something that I don't recall, the chances are I didn't do it. Of course, those may be times that brain damage is making me behave erratically, but nobody has said anything yet, so I shall continue to assume that my mentality is essentially unaltered.

I'm still going to claim brain damage whenever I don't know your name, though.

Mind Matters

Brains are meat. Complex meat, but ultimately they are made of cells, fed by oxygenated, glucose-rich blood and as susceptible to damage or training as many other cell types. For example, when you train a muscle to stretch further, more than simply training the muscle fibers to extend further, you are training the stretch reflex in the brain to allow a deeper stretch. If the brain doesn't adapt at the same time as the muscle then you behave as though the muscle is shorter.

The mind is, according to many, harder to pin down, but I think it irrefutable that the brain is the substrate for the mind. It is easier, when practicing psychotherapy, for example, to consider the mind independently of the brain, but brain damage and psychopharmacology draw us back to the physicality of the brain, and the effect that changes to the brain have upon the mind. I think the converse is also true.*

The state of a mind affects the brain's behavior, that much is clear. When we're distracted, worried, or stressed, typically seen as conditions of the mind, we perform certain tasks less well; our brains work less well.  I contend that the mind affects brain (re)development in concrete biological ways. I think I'm living evidence that this is so, as is anyone who recovers from brain damage, whether from stroke, concussion, shrapnel, gunshot or any other cause.

There is a difficult line for neurologists to tread. On the one hand, recovery is possible in most cases if and only if a patient's mind believes that it is possible. On the other, even the most optimistic patient still has to put in a lot of effort over a long time to see results. I have tried to remain resolute, but I had little idea two years ago just how long it would take to recover. I think I have a better idea now, and it's a long time. 

Perhaps it is particular to stroke, or maybe it is just any brain damage that involves older people, but there is an infectious attitude of defeat to overcome. Add to that the depression that is a common result of brain damage and slow recovery, and it is difficult to break out of the pernicious state of mind that inhibits recovery.

The good news is that minds can, with difficulty, be controlled. We are conscious. We can make choices. We can recognize that the default despair is counter-productive. Above all, we can 'fake it, until we make it.' By doing so, we use our minds to control our actions until our brains encode that behavior as automatic. Anyone can do this. Those of us with brain damage must do this. 

* There is no inconsistency here with the belief of many that the mind has something like extra going on, call it a soul, divine spark, or what you will. I don't believe in anything supernatural, but my belief on the matter doesn't preclude that possibility.

Moving Pictures

Recently I've seen Hunger Games 2, Thor 2, Hobbit 2, Filth and last night, The Night of the Hunter. I'm lucky to live very close to the American Museum of the Moving Image, and a 10-screen cinema. The museum's website is shit for mobile and accessibility by the way, but the movies are good.

One of the features of my brain damage is that some level of critical faculty, or some intellectual processing is absent. So, I respond to things rapidly and honestly. This often means that I am easily manipulated by movies, but has another side effect: I can't rationalize a movie I'm finding dull with intellect.

As a case in point I was very engaged by Catching Fire, Thor and Filth least, perhaps the Thor movie, but Chris Hemsworth is yummy. I was so engaged by The Night of the Hunter, which has child actors who could be replaced by wooden blocks with little loss, that I am still thinking about it and its imagery today.

I thought the Hobbit was a bit dull. For all its flair, stellar effects and so on, I was bored. More Smaug, less New Zealand, and get a sodding move on.

Of them all, if you're looking for a good movie to take tweens and up to, then I would recommend The Hunger Games: Catching Fire. While you're there ask yourself who you are most like in real life. Snow's granddaughter? Effie? Senna? Be honest. I dare you.

The effect of the damage is interesting; it makes me a pretty cheap date: if a movie's well enough made, I will enjoy it regardless. It does have something of an emperor's new clothes effect though. You can't hide boring behind glitz. 

Taking Advantage of the Stupid Brain–an Exercise Hack

A lot of recovery focuses on how amazing the brain is, how it is astoundingly good at picking up the slack left by damage, and how resilient it is. To be this way, the brain itself has to be stupid and lazy, at least when it comes to self-aware animals like us. If we're cunning, though we can use some of that stupidity and laziness to our advantage.

The brain is evolutionarily geared to prefer activity that takes least effort for greatest reward. Throughout our lives, it tries to make our actions, in particular, as efficient as possible. Not only do we use less energy that way, but we end up using fewer neurons for things that we do repeatedly, and have more brain left over for complex, abstract thought. If you have ever got to work but don't remember the coffee you drank on the way, you've felt this.

This process can be seen in children when they go through adolescence and prune an amazing number of neural pathways to leave optimal paths, and the clumsy duckling becomes an elegant swan. It's what is really going on when we talk about "muscle memory"—when a complex sequence of physical actions is neurally optimized as an atomic unit that, once initiated, completes without conscious intervention.

It's impossible to decide consciously which path is going to be optimized, and which is going to be discarded; repetition tends to be the key, at least for physical activity. How do we determine, though, what habits of mind we can form?

Although the impetus to exercise was clear to me, a year ago, it's not so clear now, not so immediate. Put another way, the small incremental gains I get in function are proportionately less significant, so I appear to be getting less reward for more effort. Put yet another way, it's gotten harder to go to the gym and pool.

So I tried a hack on my brain, to see if I could make going to the gym (and pool) easier. I've already made the going as efficient (and energetically cheap) as possible, so the idea was to front-load the reward. Typically the benefits of exercise that we can sense, and the brain can operate on, come too late for us to associate the action of going to exercise with the reward of having exercised. The hack was simple: any time I thought about the action of going to exercise, I would then say to myself, with a mental tone of glee, "ooh, goodie! I'm going swimming tomorrow!"

That was it. I didn't have to mean it, and I frequently didn't, I just had to think (or say) it, no matter how artificial. That was the totality of my experiment.

It worked.

I was far more likely to actually go to the pool or gym, after I had thought "yippee! gym tomorrow! and legs, I love legs!" (I don't), the night before. I'm hoping that in two or three years' time, I won't have to say my silly fake mantra, because my brain will have associated the benefits of the exercise with the (short and painless) drudgery of getting to the exercise. Until then, "Yay! Skeevy pool tomorrow!"

Stroke Survivor? Victim? Sufferer? None of the above.

Within a week of having the first stroke, the nomenclature around it vexed me. "Stroke patient" worked while I was in hospital, but that was it, and the terms that replace it are rubbish.

I can't abide "stroke victim." The brain event I had didn't select me for victimisation, and I'm not now, nor have I ever been, a victim of any singularly malign force. I had the stroke because I was fat, lazy and have a genetic predisposition to high blood pressure that, coupled with my obesity and sedentary indolence made my head explode. No victimisation there.

Whenever I hear "stroke victim" I am reminded of a scene in the movie Addams Family Values, where Wednesday is trapped at summer camp and is enduring a swimming rescue lesson. She's shown on the end of a pier in a black Victorian bathing costume, next to her tween nemesis, the preppy, peppy, pretty bland and blond girl. The instructor asks for a volunteer to be the victim. The blond girl's hand shoots up and she squeals "me, me, me." The camera cuts to a close-up of Christina Ricci deadpanning "all your life."

The popular alternative is "stroke survivor." I reject this because it's tautological. I'm either a stroke survivor, or I'm dead, and if I were a corpse, you wouldn't be reading my writing. "Survivor" is way better than "victim" but it's  still rubbish, because it adds nothing to the conversation.

Until recently, I had settled on "stroke sufferer." There's certainly been some suffering involved; recovery isn't really that fun. The term is at least accurate, but a problem still obtains: the word "stroke." Having a stroke is significant, and it matters a lot when the underlying cause is strange and unusual. But seventeen months later, I find 'stroke' as a magic word troublesome. Sure, I will use it to my advantage whenever I can, because frankly, I need the help and consideration, but it implies that there is something particular and unusual about my condition, and I see that as more of a problem than a perquisite.

I'm not recovering from strokes, you see. They were what caused it, but what vexes me now is simply brain damage. Differentiating stroke from being shot in the head or getting your brain damage some other way serves only to make excuses for not recovering, and sod that.

So, I'm left without a snappy term, and default to "stroke sufferer" for the time being, until I  can think of a good way to encapsulate "ordinary guy recovering from brain damage."