Imaginative experience and rebuilding the brain

In 1986, the course of neurologic treatment changed forever when Mark Block, one severely spine-injured young man, chose “imp-possible” over “impossible” and, every day, spent hours imagining how it would be to walk again, imagining his “wires” getting hooked back up again, riding a wave of inner certainty that can only be called a gift.


He mentally rehearsed endlessly. Day after day after week after month.


And then, months into his care, he told the nurse, “Watch this,” and made his foot twitch. The first nurse dismissed it as a spasm. The second or third nurse got the doctor.


The doctor stood over the foot — really close — and said, “Do it again.” Twitch.


“Again.” Twitch.


“Again.” Kick.


One of the great moments in medicine.


Upon discharge, he walked out of the hospital.

Some of the meditations from my pain psychologist are visualizations. They’re made for a mass audience, not for people with chronic illness generally or CRPS specifically, so a certain amount of tolerance with the language is required. (At one point, the narrator says, after a pregnant pause, “Looking good.” Oh for heaven’s sake.)

Fortunately, she’s dropped pearls of wisdom about what’s important in these exercises, so I’m (naturally) mulling over a new set of scripts which attain those ends a wee bit more gracefully. (Of course, the files will be freely available to download.)

The key point is, it’s important to imagine what it feels/looks/smells/sounds like to be really well, really functional, really active, really smart again. Here’s the lowdown:

  • It’s not just a set of images, it’s a multisensory experience that I imagine as clearly as a good memory.
  • It’s important to do so vividly and frequently.
  • It’s important to think of imaginative experience as a good working hypothesis, rather than a hopeless quest or pointless daydreaming.

That’s key. Making it seem real, and not dismissing it afterwards. Over and over again.

That’s how the brain is persuaded — molecule by molecule, link by link, cell by cell — to give up its current structure, which pins so much of the neuro-anatomical, neuro-chemical and neuro-endocrine dysfunction in place.

Then, in many cases — and with suitable support from nutrition, psychological care and physical activity — it’s possible to reverse-engineer a healthier, more functional neuro-setup.

It takes time. It takes dogged persistence. It takes a vivid imagination — which can be developed, if it’s not already there. (Like getting to Carnegie Hall: practice, practice, practice.) Last but not least, it takes a smidgen of luck.

The imaginative experiences, if all goes well, help your neurological structure leap the chasm between what it is and what it should be. It’s an enormous leap of faith to get started, let alone keep going for as long as it takes to rewire such an astoundingly complex structure.

Of course, inner resistance and outer events are liable to leap out and knock us off track, because that’s what they do… and we have to find ways to pick ourselves up and dust ourselves off and get back on track as soon as possible.

It’s a huge job, inside and out — all that leaping.


But it’s not impossible.

I’ve been mulling experiences that I can imagine failing to do with my current body, but remember doing with my healthy one.  I think I’ll write them out (word-painting at its most precise) and build really great imaginative experiences to come back to, again and again.

Running; sailing; riding; studying; traveling; writing complex books; lecturing on neurology, pain, and healing — you know that’s what I’m thinking about.

What would your imaginative experiences be? What would you leap the chasm for? What could you immerse yourself in, week after week, month after month, maybe year after year, for the chance of pulling yourself up to it?

It’s an interesting question, isn’t it? I have a feeling my list will change with time. As I sit with these imaginative experiences, I’ll see which ones really keep on giving, and which ones were better in theory than practice — and, of course, I’ll find the one I haven’t thought of yet, which will turn out to be key.

At the moment, the hard part is coming back to reality afterwards. That can really suck. But there are ways to deal with that — instant distraction, for instance — and the more I think it over, the more I think it’s worth it.

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Slow reboot

Recovering from:
– the logistical hell of last week,
– seriously overdoing my training,
– and a phenomenally complicated iteration of the well-worn drive North…

Well, I arrived at my NoCal home at 9 Monday night, and am only just coherent enough to post.

I’m taking both the resting and activity seriously. This is the great juggling act of being a Type A (-ish) with CRPS: taking rest seriously without going too far into it, and taking activity seriously without getting too far into it.

“Pacing” is the term, but when it consists of sitting down for 20 minutes after a leisurely 15 minute walk, it’s hard to give it such a dense-sounding word.

But I am learning.

Pardon the shouting up ahead. Sometimes it’s the most apt way to express a thought. And with that said, let me be perfectly clear:

NO MORE OVERDOING. This desperately slow recovery is NOT BLOODY NORMAL and I can’t afford many more like this. I’m NOT GOING TO LET CRPS OUTSMART ME.

Even though I can be reeeeeally thick at times.

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Now here’s an interesting point, mentioned in passing in my prior post: It’s not very useful to be nervous, but it’s generally perfectly rational.
There is a reason why people become nervous. It’s not to irritate those around them, regardless of others’ views.
It’s generally an appropriate response to some hideous experience, or, more likely, a consistent and extensive series of hideous experiences. After enough hideous experiences (or enough hideousness in one experience), it’s irrational not to be nervous.
It’s important to distinguish between what’s irrational and what’s not useful. Very little human behavior is truly irrational, but there’s a lot that’s not useful. (One popular term is “dysfunctional”, but that’s a cranky, judgmental-sounding word, so I won’t use it.)
CRPS, along with many central nervous system disorders, triggers more than its share of non-useful responses… However, I find that recognizing that the response has a cause, that it’s not crazy or irrational, that there is a reason for it, goes a long way towards making those twitchy responses more manageable.
You know me: it’s just a problem, and problems are meant to be solved. Therefore, how can I solve the problem of handling non-useful responses?
Here’s my strategy:
  1.  Identify the nonuseful response: when do people react badly to me? What was I doing at the time? How did I sound, how did I feel? I zero in on the non-useful response by exploring what was going on outwards and inwards when it happened.
  2.  Internal inquiry: I look at what’s going on inside me when those events occur, when similar events occur, and what I remember from before I started the inquiry. This gives me insight into what, in me, contributes to the negative reactions in others.
  3.  Get perspective: discuss it with friends, check my assumptions, try to find out if I’m overreacting (gee, that never happens!), look for an outside point of view on specific incidents. I do this after the internal inquiry, so I have time to brace myself for unpleasant truths. Sometimes it’s other people; sometimes it’s me. Quite often it’s both, but I only control one end of that.
  4.  Identify the underlying problem: this is when it starts getting easy. Having faced the unpleasant reality that the world can’t read my mind and might not think well of me when I behave less-than-brilliantly, now I just have to notice what the fear or the need was that triggered my unuseful reaction in the first place. There’s usually a fairly easy way to address that, sometimes simply by crediting it.
  5.  Monitor and reprogram myself: when similar situations arise, I pay attention to the present moment, and react appropriately to that, keeping half an eye on my old reactions so they stay out of the way. It doesn’t take long to reset to the usual defaults of consideration and common courtesy. I’m lucky that way.
With care under way, survival taken care of (more or less), and my relationships whittled down to the ones that work, I can further reduce the mess in my life by managing my own CRPS- and chronic stress-rattled reactions better. The time will pass anyway, so I might as well be better for it.
I’m not going to become something different just by changing a few responses (for the better, I hope.) I’m still me, and anything that changes is optional to that.
The past few years have been… How shall I put this… Rich with opportunities to relearn how to manage myself, as the storms of neurochemistry, medications, medical neglect, institutional harrowing in so very many ways, stripped relationships, the loss of everything (and I do mean every thing), have marched through and torn up all that I thought was my life.
I find great calm in one simple fact. When everything has been ripped away, when life and purpose and capacity and identity are nothing but rubble flung in shapeless heaps as far as the eye can see, when there is simply nothing left… As I stand there, too far gone for tears, too empty to complain, too lost to move… and wonder, “Who, or what, am I now?”
I’m the one standing there, doing the asking.
I love the unkillable certainty of that.
Have you noticed how freeing it is to let go of your ideas of who you are?
Among other things, it makes re-learning how to manage reactions a whole lot simpler.

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Only one thing at a time

Yesterday, I got rich red dust from lovely Mt. Konokti (pronounced kon-OCK-tye) all over my car, the last of my stuff out of storage, and a lovely home cooked dinner. (J is an excellent cook of wholesome homey fare.)

This morning, the dust was washed off, all fluid levels checked, dog kisses washed off the insides of the windows, and a cooler packed with ice and three days of food (the time it’ll be until I can use a kitchen.)

J’s invisible presence is with me in the carefully packed, wholesome food, the shiny purring car, and periodic calls where he reminds me to be alert at rest stops and be sure to call his brother as soon as I get moved in.

I’m in a stunning pain flare, with both CRPS and fibromyalgia getting well into gear, but I made it to the halfway mark and the motel’s spa is being warmed up — just for me.

The coming week is booked with appointments for 3 different types of therapy and 3 different specialist physicians, for a total of 5 initial assessments and tests in 4 days. “Gruelling” doesn’t come close.

Somewhere among those appointments, I’m moving to the place nearest to the doctors that I could possibly afford and probably survive. Unfortunately, it’s right up the mountains — all covered in snow.


I can’t say any more about that.

It would be all too easy to get wound up about this… let’s call it, madcap adventure of a week. But I’ve had enough of “wound up,” I really have. (There’s a post cooking in my head about what it’s like to live with a fight-or-flight system that’s physically hardwired into gear, and a heart that isn’t interested in that much strain. I don’t recommend it.)

I’m thinking of this as simply a series of tasks. One thing happens after another, and only one thing can happen at a time.

J says that often: “One thing at a time.” He’s a bit hyper too, and these are words he has had to learn to live by.

This way, I don’t have to think of the whole fraught mass of deadlines and how many times I have to drag my wretched carcass down into town regardless of what it could do to me. I just think of the next task.

Pretty soon, that’s going to be a hot-tub in the middle of a green field next to a state park.

Lets face it, there are worse things.

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It’s my last evening in what has begun to feel like home. You should see the prep on the garden. Some fabulous food will come out of there. Pretty much all J’s work of course, but I cheered.

Long drive for two days, then ill be in (gulp) the snow. Considering the latitude it shouldn’t last long.

What really unnerves me is four solid days of physical and mental assessments. It’ll be an interesting week. I’m pretty sure I’ll make it to the weekend….

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Made it!

Sacramento. In exactly the same number of pieces as we started out in.

I’ve learned a lot on this trip about travelling with CRPS. I have a lot to digest — and a great deal of paperwork to complete for the larger project. 

The next few days, we’re going to spend taking care of JC’s concerns for a change.

Then there’s a historically corrupt holiday which is widely celebrated (including by me) as an excuse to spend quality time with family of the heart.

Then we shall see what my brain makes of all this, after a chance to mull and recuperate.

Meanwhile, I’ve gotten used to blogging more often. There’s something to be said for it.

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False economy

I grew up in the desert… but I didn’t do much driving at the time. If I have an excuse (doubtful) then that’s it.

We were about to blow out of Laughlin, Nevada and passed a Chevron charging $3.75/gal. After a week of gas costing less than $3.50, and knowing for a fact that it was $3.25 across the river, I vetoed JC’s suggestion to tank up before leaving town.

He was thinking about the desert ahead of us; I was thinking about the gas prices behind us.

Our hope of finding gas on the way out of town didn’t pan out. We weren’t worried.

50 miles later, we realized we should have been, and wondered if we might be SOL. I swear I felt my late Dad’s gaze on me with that unmistakeable look telling me I reallly do know better.

JC called out, “Come on, Raven, help us out, brother!”

A mile or two later, an arrangement of plywood (which I’d mistaken for another ruin) caught his eye. He spotted it as a gas station. At that point I was glad to pay $4.98/gal.

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At first, it’s fun, getting bonked gently about… until I get seasick. Then I have to put my feet up on the settee, turning myself sideways to the motion; doesn’t make me sick that way. (For some boaters, it’s the forward-back motion that’s better.) I put my feet up and read. Lovely.

Then the seesawing motion gets a bit much — just about the time stuff gets knocked around on deck. Oops.

Five or ten minutes of concerted outdoor work, moving things, tying things down, tossing things out of the cockpit and into the cabin, adding a springline (which reduces the hobby-horsey swiveling motion), and fielding bags and cushions as they try to grow wings.

Remembering why, when I had competent arms, I also had short hair; it utterly sucks to be constantly blinded when you’re looking at your work. Maddening. Good thing scissors are unthinkable in this wind, or I’d have a bugly (butt-ugly) do by now.

Climbing back inside, I brace myself on the steps, and work from behind to snap the cloth in place over the hatchcover, then slide the boards in. I won’t try to explain what that means because it looks (and sounds) technically impossible, but I did it.

Batten down the forehatch (yes, I really do have a hatch with closures that are called battens) and shut the forepeak to keep things in storage from sliding into the sanitary facilities.

My last task is to light a sweet-smelling beeswax candle and snuggle into this slightly untidy, but safe and warm, rocking cradle for the night.

Hard times, in some ways. But boy, things sure could be worse.

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