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Rewired

Remember how early on in the book I talked about the “creeping paralysis” that had taken place that fateful day?  Strangely, a year later I have noticed an odd physical event: sometimes I’ll have a persistent itch either at the joint when my right leg joins the abdomen or actually up on the right side of my abdomen and when I scratch it my right leg and foot twitch and jump.  It is as though they have some bizarre new connection.

Years ago an employee of the phone company came to our neighborhood to do some work on the phone lines.  About an hour after he left, my phone rang.  The caller had the wrong number but what was weird was that she was attempting to reach one of my neighbors!  Odd coincidence I thought.  A while later the phone rang again.  Another wrong number.  Another caller looking for the same neighbor!  And then it happened again!  “A coincidence?” I thought.  I think not!  Turns out that in fact while disconnecting and reconnecting our phone lines the phone company lineman had plugged them in backwards!  I wonder if that can happen in the brain.

And why is it that it can work around some damage (I can use my hand and arm normally again) but not other damage (i.e. this darned leg!).  I made an appointment to see my stroke neurologist. 

At the doctor’s office, after catching up, we pulled out the old photo albums and reminisced about my stroke.  I wondered aloud why I had managed to regain use of my upper extremities and looking at my “pictures” he noted a plausible explanation: my brain had apparently reached the limits of its capabilities.  (Not the first time, mind you.  I’ve had that experience frequently over the years.  Especially when it came to algebra.)

It seems that my cavernous malformation[1]  is located along the left frontal lobe’s “motor speedway” (or for those of you brainiacs, the corpus callosum).  According to the Oregon Health and Science University Brain Institute (my italicized comments added), “The corpus callosum (Latin for “tough body”—ironic, isn’t it? Not so tough as you thought you were, huh mister?) is a broad, thick bundle of nerve fibers in the entire nervous system, running from side to side and consisting of millions and millions of nerve fibers. (not just millions, but millions and millions!) If we cut a brain in half down the middle, (Why would ANYONE do that??!!) we would also cut through the fibers of the corpus callosum.” (Duh!)  I prefer the motor speedway image. 

The corpus callosum is in the middle of the brain just above the brain stem running, basically, front to back.  Just a smidge above that is one end of the primary motor cortex which runs side to side perpendicular to the corpus callosum up over the cortex.  Are you with me here?  This primary motor cortex is otherwise known as the “homunculus” or Latin for “little man.”  The homunculus is called that because it—sort of—resembles a little man lying on his stomach with his head twisted around facing outward, as if over a large round rock, only this guy is draped over the motor cortex of the brain. [2]  It actually doesn’t seem very comfortable, at that.

Anyway, this homunculus is thought of as the “body within the body.”  As the blog site io9.com puts it, “We all know what bodies look like from the outside. This cortical homunculus is how your brain sees your body from the inside.”  There are actually two of them, one over each motor cortex.  “Every part of the body is represented in the primary motor cortex, and these representations are arranged somatotopically[3]— the foot is next to the leg which is next to the trunk which is next to the arm and the hand. The amount of brain matter devoted to any particular body part represents the amount of control that the primary motor cortex has over that body part. For example, a lot of cortical space is required to control the complex movements of the hand and fingers, and these body parts have larger representations in M1 (the homunculus)[4]than the trunk or legs, whose muscle patterns are relatively simple.”[5]  

In lay person’s terms, this little dude is pretty strange looking!  His head and hands are much larger than—and out of proportion with—his legs and feet and correspondingly the sections of the brain that control those motor functions are also out of proportion.  That’s because your hands are much more intricate machines than your dumb old legs and feet!  To put it in perspective, the sections of the motor cortex that correspond to the feet and toes (each with only one section) are only about a third as big as those which correspond to the hand, fingers and thumb (each with its own section).

(Can I just say that in researching for this book I have encountered some pretty weird stuff out there on the Internet?  For instance, there seems to be a whole community of homunculus followers out there—like some strange cult—who have written about this weird little man, created at least one Facebook page for him, even created animated videos about him!  Some people just have way too much time on their hands!)

Anyhoo…all this is to say that upon closer examination of my MRI it seems that the cavernous malformation lays alongside this homunculus on the left motor cortex of my brain. (Remember…the left side of your brain controls the right side of your body.  Confusing to say the least!).  The bleed must have begun at Homunculus’ feet (hence that’s where I felt it first) and spread “eastward” past the legs, trunk, shoulder, arm, hand, and fingers stopping just short of my middle and forefinger and thumb.  Which explains why those were the only appendages I could move by the time I reached the hospital.  Another way to look at this is to imagine a paint can spilling: the paint might pool right at the point of the tip over and then depending on the terrain might spread out from there, getting thinner as it spreads until it finally stops.

What does all this mean?  Well, the paint spill started at my foot.  That means the greatest part of the spill was there and caused the most damage to my foot and leg. And quite possibly, this damage is just too great[6]for the super muscle known as the brain to fix.  In other words, the circuitry there is fried.  Specifically, the nerves controlling my peroneus longus and my flexor digitorum are toast! This renders those muscles weakened and unable to win the tug-o-war with the opposing muscles.  Consequently, the outside muscle of my calf that pulls against the inside muscle of my calf allowing me to keep my leg straight when I walk and the bottom muscle of my foot that pulls against the top muscle of my foot allowing me to flex and extend my toes (and wiggle them in the sand) can’t pull their weight any more.  Of course, there are probably other muscles—and tendons—affected which all-in-all makes “walking” impossible and “getting around” a chore.



[1] Did I mention before that months down the road from my stroke, when we had learned of this little appendage in my brain, my darling husband still thought it was a large hole?

[2]Turns out those brainy folks who studied and named all the parts of the brain that we know something about can be somewhat imaginative as well.  It’s a little like ancient people seeing a face in the moon.

[3]Organized in a point-to-point representation of the surface of the body.

[4]My insertion

[5]www.brainconnection.positscience.com

[6]Or perhaps, not important enough to bother with, as far as my brain is concerned.

 

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Driving Miss Crazy
We make a lot of assumptions—and assume that we must find solutions—based on personal experience and cultural norms.  For instance, we might assume that a single person is not single by choice so we’ll encourage them by trying to play matchmaker.  Or we might assume that a childless woman is just that because she can’t have children, not because she chooses not to.  Or that something must be done to get that reclusive widow back out into the world because, well, she just couldn’t be happy being on her own all the time.
One of my favorite stories that demonstrates this tendency is when my second son was four.  My mother had recently died—much too young—and our family had all attended her memorial service.  Back at home a few weeks later I was working in the kitchen and Kyle was playing quietly alone not far away.  Then suddenly he approached me.  “Mama,” he began his query, “Nana was your mama, right?”  “Yes,” I replied.  “And Nana died.”  “Yes,” again.  I could almost “see” the wheels of his little brain working on this human algebraic equation.  So next, logically, “So that means you don’t have a mama.”  “No, not anymore.”
The sheer emotional weight of that conclusion must have been sinking in as he remained silent for a while.  Then, suddenly and brightly he bounced back.  “I know!” he exclaimed, as though he had been called upon to find a solution.  And he had.  He had ticked off in his mind all the potential “mama” figures that were left to us: his GeeGee (his father’s grandmother) and his Gramma (his father’s mother) were still alive and available for the job.  “GeeGee can be daddy’s mama and Gramma can be yourmama!”  And with that he mentally rubbed his hands together as if to announce that the problem was solved, the problem that only a four-year-old could truly appreciate: no one should be without a mama.
I think this phenomenon is responsible for the numbers of people who feel the need to suggest solutions to my not driving.  The assumption is that from their perspectives not being able to drive would be a fate worse than death and therefore I must have the same outlook.  They also assume, presumably!—that I’m not driving because I just hadn’t thought about the solution that they are about to put forth.
I am reminded of the day that I announced to a dear friend (a woman who is 10 years my senior and whose children were entering college when mine were just entering school) that I was pregnant with a little surprise—our fourth child.  I was shocked by the intensity of her irate response and the venomous attack on the supposed irresponsibility of my husband!  In a word, she was furious at him for doing that to me!  Later she revealed the cause of her anger—she had responded not as she would as my friend but as if it were she who was again pregnant.  Projecting herself into my situation, ten years older and thoroughly done with raising children, she naturally had severe anxiety which manifested itself in rage.
So it seems to be with my friends who would empathize with my predicament.  Now I know you all mean well.  And I know you might just find this hard to believe.  But I just don’t miss driving!!  Really I don’t!  I’m not just saying that because I can’t and I don’t see any solution to the problem.  I really don’t mind it.  I know!  I’m surprised to hear it coming from my own lips but it appears to be true for me.  It is rare that I feel trapped by not being able to hop into my car and drive any where I wish.  I feel quite content to be driven where I need to go, perhaps in part because I don’t feel a need to go too many places.  I especially don’t feel a need to go where your kind advice is driving me!
Recently I’ve begun to have dreams about driving—or contemplating driving—and then remembering that I can’t.

An End to Religion


The following first appeared in “Reflections” in the St. Andrew’s Lutheran-Bellevue WA newsletter, “The Voice.”
 
“By contrast, the fruit of the Spirit is love, joy, peace, patience, kindness, generosity, faithfulness, gentleness, and self-control.” Galatians 5:22-23a, NRSV
I know.  I’m taking a big risk by titling an article for a Lutheran church’s newsletter in such a manner but please hear me out.  In the wake of the recent tragedy at Sandy Hook (and the many that came before and have followed) I was browsing through the notes app on my smart phone where I jot down ideas for, among other things, this column and came across this one from last March:  “Seen on a bumper sticker: ‘Clinging to my gun and my religion.’”  It troubled me greatly when first I saw it and it continues to make me ill.  Now lest you think that this article is now going to expound on gun control, rest assured, it’s not.  But the more I think about it, even though I was fairly confident that the owner of that vehicle and that bumper sticker was one of a garden variety of conservative Christians he might just as well been sporting that same slogan in other parts of the world.  Every major religion seems to have—and use—its guns. Much evil has been perpetrated using guns in the name of religion.  Since doing away with guns worldwide seems like a dream reserved for Coke commercials I started wondering if the answer might be to do away with religion.  If the two are dependent on each other as in any symbiotic relationship then stamping out one might result in the demise of the other.
Heresy you say?  Not so!  Nowhere in the Bible (and I can’t be sure but I’m pretty confident the same holds true for the Koran and the Torah) is there any mention of the word or the concept of “religion.”  Religion is a man-made principle and like all things man-made it has flaws—sometimes serious ones.  And religion does not prescribe a path to God. Mind you, I’m not talking about the end of faith or the end of belief.  What I’m talking about is putting spiritualityback in its rightful place as the way to be in relationship with God—the God that every religion claims as its own.  Religion and guns.  A way to God?  I think not!
On the other hand, can you imagine anyone spewing venom such as, “Clinging to my gun and the spirit”?  Doubtful!  First of all, notice that religion seems to be something we have possession of, whereas, spirituality possesses us. Religion gives us rules, responsibilities and a strange sense of superiority.  Spirituality gives us gifts.  How freeing!  And we don’t need violent means to defend those gifts.  We don’t need laws to control them. They are just there, for the taking: love, joy, peace, patience, kindness, generosity, faithfulness, gentleness and self-control. The gifts of the spirit need no defense; no one will or can take them away. We need only to embrace them, to “cling” to them.  Praise be to God!

I never said I was a poet

My darling son asked me a few months ago if I would consider singing a song on his upcoming electronic music album.  I felt honored and flattered…until I found out that I had to write the song!  I mean lyrics and melody line!  Eek!  I am not a poet.  Lyrics are basically poetry.  I can–sort of–sing but writing the words?  That’s not my line.  But now I was committed; how could I turn him down?

Okay, think logically:  first, what was his inspiration for the piece, the working title of which was “god particle”?  That seems like a good place to start–until he began rattling off the following: “…the god particle aka Higgs boson as well as science, dark energy/matter, voyager 1 and 2, origins, humanity, progress…basically recent innovations and discoveries of science/technology coupled with humanity evolving…Also creation, mother/god=goddess/giver of life, what make us human, where we come from”

Phew!  What?!  Okay, that plan didn’t help much.  Now I was stumped and confused.  What the heck is “Higgs boson”?  I didn’t know I was going to have to study for this.  So I started doing research online, beginning with “Higgs boson” which led me to the book, “The God Particle,” by Leon Lederman which led me to studying writings of Anaximander and Democritus which led me to Gregorian chants and the Taize community which ultimately led to this (with my thanks to all of them):

god-particle

Sine tuo numine
Nihil est in homine
Nihil est innoxium

 Without your spirit
Nothing is in man
Nothing that is harmless

Giver of life...who are you?
      What are you?   Where are you?
Giver of life
      You are so close, everywhere and yet so hard to find.

Sine tuo numine
Nihil est in homine
Nihil est innoxium

Without your spirit
Nothing is in man
Nothing that is harmless

Are you particle or God?
Substance or spirit?
      The earth was a formless void
       And darkness covered the face of the deep
      While a wind from God swept over the face of the waters.
Here we stand at the edge of a precipice
Looking down into eternity.
Are we indeed looking at the face of God?
Or is that our face staring back at us?

Immortal and indestructible
Surrounds all and directs all
Immortal and indestructible
Surrounds all and directs all

There is some comfort in this, some peace
God or particle, substance or spirit
There is some comfort in this, some peace
God or particle, substance or spirit

Dona nobis pacem
Grant us peace    

 

Exclusive! Book Excerpt!


 Here’s an excerpt from my upcoming book to tantalize you and convince you to buy it!
 It’s Not Walking. Walking is a whole other thing.
I’ve probably said this before (and most likely will say it again) but if one more person says, “Look at you! You’re walking!” I’m gonna scream!  This, this thing that I do to ambulate from one place to another, this is not walking!  Not in any sense of the word.  This is getting around.  (as my friend/Operations Manager is fond of saying, “it’s a workaround; we’re really good at workarounds!”).  Walking is a whole other thing. 
Walking, in case you were unaware, is a complex exercise in which brain, muscle, tendon, nerve, bone, cartilage, and blood dance together, perfectly choreographed. Human walking is frequently described as “controlled falling.”  According to the American Physiology Society”…walking does not involve a simple sequence of alternating contractions in pairs of antagonistic muscles but involves complex and variable patterns of activity.”
Still not convinced?  Take a few steps and carefully observe. As you move forward you bend your knee slightly, pull up your foot starting with the heel rolling up to your toes and then using your hip propel yourself forward, generally with a great deal of grace and balance.  Take any of those myriad muscles, joints, etc. out of the equation and regular walking as we have evolved to do no longer exists.  It now becomes “getting around.”  In truth, I do walk with my left foot but I manage to drag my right foot along for the ride.  When I try to gently bend my right foot forward (which it doesn’t want to do) the action causes the right lower leg to jerk up marching style and the foot to curl inward resulting in putting the foot back down mostly on its side.  If I try to force the natural movements of a step I end up dragging my toes along the floor and if I’m walking on carpet that’s a recipe for tripping and/or stumbling.
I have a new appreciation for such a lowly activity as walking.  It is really poetry in motion compared to what I do.  And walking is only part of it.  I also can’t kneel, can’t squat down very well, have trouble rolling over in bed or on an exam table, crawling, and crouching under, and forget about getting down on the floor—at least on purpose!  Not only are these activities nearly impossible but painful as well.  So what you say?  Try picking something up that has fallen and rolled under a piece of furniture without squatting or kneeling.
Stepping over even a bump in the sidewalk or down from a curb can be treacherous. I do not have good leverage with my right leg so getting into and out of a restaurant booth or theater seat is tough. I lack the finesse to stand and just place my right foot into a shoe or even put on pants.  I get tangled up in cords, table and chair legs, and other would-be obstacles. We can’t park too close to another car as I can no longer squeeze out through a narrow passage, not being able to bend my knee sufficiently or slide my foot and let out smoothly. There’s definitely no scrambling up on a step stool or ladder to reach something above my head.  And of course, driving—at least using my feet—is out of the question. As my last PT put it: “You should not be driving; I’m glad you’re not driving!”
Perhaps the worst injustice: I am consigned to wearing only very flat, flexible shoes or “sturdy” ones which are large enough to accommodate my charming AFO.  No heels, slip-ons, boots or skimpy sandals for me.  And I have a pretty respectable collection of those! Every day I walk into my closet and am confronted by the Ferragamo’s, Eagles, Clarks, Italian Shoe Companies, and others that reside there.  It is as if their collectives eyes are gazing up at me; as if their collective voices are calling “remember”?  They are decidedly from before and as time goes on and more than one expert tells me that this is probably the best it is going to get I wonder if it isn’t the prudent thing to do to find a new home for them. But then I would walk into my closet and be confronted by sadly empty shoe shelves, looking as pathetic as when they were once filled with unused shoes.
At a friend’s birthday party I mentioned this in conversation with another friend.  Her advice (because it seems that everyone has some for me these days!) was that I start by giving up just my least favorite shoes and as I buy new ones that work I gradually give up the rest, eliminating the dreaded empty-shelf syndrome.  Sound advice except…I’m also “paralyzed” by something similar to what families of coma victims must experience: when do you pull the plug?  What if you pull it and then they come up with a cure?  What if you pull it and then spend the rest of your life wondering if it was the right thing to do?

It is fall…

although the weather belies this fact.
    the calendar says so.  And the activity in Port Susan does as well.
The boats, summer’s banner here, are gone, pulled from the waters before the winter storms come
    and bundled off to dry, safe storage until next summer.
In their place is a new armada of water craft.  Now that the water sports for humans are ended
the flocks of fall/winter fowl have arrived to moor here for a time: widgeons, loons, mallards
    geese, golden eyes.
Just as the neighborhood boaters know just the right time to “put in” for the season, so too the
    migrating floaters.