trueFoolishness: The Handicapped Decal

April 11, 2011, Know Theatre:

Somebody stole my handipcapped parking decal this weekend.

This is what I’m hoping. I’m hoping you’re a little confused. I’m hoping, as you look at me, you’re thinking, why would she need a handicapped parking decal? She doesn’t look handicapped.

‘Cause that’s what I thought, too.

I was diagnosed with Multiple Sclerosis in 1994. It would take me over eight years of hemming and hawing and handwringing to finally get around to applying for a handicapped parking decal.

Me? Handicapped?

I wasn’t handicapped.

Yeah, I had MS. But I didn’t think that meant I was handicapped. The figure in handicapped icon is in a wheelchair. I wasn’t in a wheelchair. Not most of the time.

I have the Relapsing/Remitting form of MS. The most moderate form of multiple sclerosis there is. MS for wimps. In the early weeks, I attempted to educate myself about the disease by meeting other people with MS. Bad idea. Most of them had Primary Progressive Multiple Sclerosis, a way harsher form of the same disease. If Relapsing/Remitting MS is like MS for wimps, Primary/Progressive MS is MS for heroes. I wasn’ t a hero. And I was in no hurry to become one.

I’ve gotta admit, I was put off by the wheelchairs. And the walkers…and the speech impediments.  I was downright terrified by the cognitive losses. The loss…for…words.

The Primary Progressives, they tried their best to inspire me.

Instead, they scared the shit out of me. Let me make one thing perfectly clear. When I say the Primary Progressives scared the shit out of me, I am not speaking literally. An important distinction between me, and some brave souls with Primary Progressive MS.

Primary Progressives, they could keep their heroic positive outlook.  They could keep their handicapped parking spots. I didn’t want to go there.

But there was always the likelihood that I would end up there eventually.

Multiple Sclerosis is an insidious disease. It turns the T-cells of your own immune system against you. T-cells are designed to attack outside invaders. But once MS gets hold of them, they turn into zombies, and they mindlessly march forward and attack your own Central Nervous System instead.

What happens when your zombie T-cells rip open the myelin sheath protecting your nerve cells? That all depends on three important factors: location, location, location.

No two people with MS have the same symptoms, because no two people are struck with attacks in exactly the same locations. Over the years, I’ve taken a lot of comfort in that. But let’s face it, there is no good place in your Central Nervous System to suffer an attack. Let’s think about the role of the Central Nervous System— the brain and the spinal cord. Together, they coordinate just about every aspect of yourself, functions you think you control, like your speech, your range of motion, your ability to swallow, oh yeah, and your ability to void your bladder…your bowels. They also control all those functions you take for granted that go on without your conscious direction, functions like your heartbeat.

Scary, huh?

Many of my earliest MS attacks happened to have taken place on my spinal cord, and those attacks caused sensory symptoms; numbness and tingling in my legs; damage no one else could see.

Once, the tingling went all the way up my bra line. Only once. After a few hours, it went back down again.  That’s classic example of RRMS. The beauty of it is, some symptoms show up, and then they disappear for good.

Consequently, I never do get too attached to my MS symptoms. I expect them to leave me. Some symptoms, the oldest ones, seem to have more trouble letting go than others. Some keep coming back for more.

One symptom in particular just kept coming back. There were moments when my legs would dissolve from beneath me. Those moments would come with no notice while my husband and I would be out on the town. Maybe I’d be just fine walking to the car, but then I wouldn’t be able to walk back  out.  My husband would have to take on the dual role of valet-parking-attendant/living-human-crutch, and would be forced to juggle parking the wife with parking the car. A handicapped-parking permit would have made those moments a lot easier. For my husband.

But me?

I regarded those moments as flukes.  Was there some sort of Momentarily Handicapped Decal? A Relapsing/Remitting Decal? A handicapped icon without a wheelchair? I’d take one of those.

But they don’t make ‘em.

Over the years, those flukes piled up. Too many flukes, and you’ve got yourself a trend.

Most memorably, there was the Wisdom Tooth Fluke. We had planned for my husband to get IV valium that morning. We hadn’t planned for the ice storm. We hadn’t planned for my legs to give out the moment my husband draped his arm around me. The dentist had to request two wheelchairs, and two orderlies, to escort us both out. We were wheeled as far as the exit, where we sat side-by-side in our matching wheelchairs and stared across a glassy parking lot of solid ice. Our little green Ford Escort was parked somewhere out in the back. Yep.

The dentist had been generous with his valium. My husband was generous with his praise of the orderlies, even as they informed us we had reached the end of the line. “Thanks for the ride, guys, you’re the best. Fun!”

This, after they told us they weren’t authorized to take us any further.

So after the wisdom tooth fluke, you would think I would apply for a handicapped parking decal. No way. My husband couldn’t lose all his wisdom teeth twice, right?

Years went by. We moved to Connecticut, to be closer to my parents, to have more people to lean on during those little flukes. I ignored all the tactful suggestions that our life could be easier with a handicapped decal. I wasn’t focused on being handicapped. I was focused on having a baby, while I was still up and about. And then I was focused on raising our son.

But MS isn’t like a plant that dies if you ignore it. The MS was thriving, with or without my attention.

Remember those tingly sensations I was telling you about? That sensations only got worse when I tapped the gas and the brake.

I had a job teaching fiction writing workshops. I had to drive to get there, right? If there’s anything MS has taught me, it’s to be resourceful. I would count on using cruise control on the highways, instead of the gas and the brake. The only problem was the traffic jams.

After twenty minutes of so of a traffic jam, the tingling sensation would build to something excruciating. It was more than a little distracting.  I was a mother now. I couldn’t die on the highway. My little guy couldn’t die on the highway. Cruise control wasn’t adequate. I had to resort to a new Plan B. I graduated from cruise control to hand controls.

And that’s how I met Luigi, the man who would finally convince me to apply for a handicapped decal. Luigi was a professional. He was sent by the State of CT to train me how to use hand controls. I picked it up right away, faster, he said, than his usual MS clients. Luigi was obligated by the State of CT to stick around and watch me drive for three entire days. Near the end of our sessions, he asked why I didn’t have a handicapped decal. All his other drivers with MS had decals. Why didn’t I?

I was hurt. Didn’t he get it? Hadn’t he said I was different than his other MS clients?

I asked, in all seriousness, “You think the State would give me one?”

Luigi looked at me funny for a moment. I couldn’t figure out what his expression meant. I decided not to read anything into it. But something was up.

After a long pause, Luigi finally spoke. “You say you’re a writer. A fiction writer. Just write up a good case to your neurologist. If you make convincing, he’ll set you up with a handicapped parking decal.”

Well, since he put it that way, I could see the logic. Applying for the decal would be like applying for the hand controls. I approached the task as a way to milk another perk from the leaky system, to obtain another little trophy, like that nifty new turning knob on my steering wheel.

I wanted to write that letter as a fiction writer, but the truth kept getting  in the way. The thing turned into a long, tortured, multiparagraph treatise on how I would only use the decal for good, never for evil, how I would never park in a handicapped spot on my good days, just because the spot was there and I was already late for the movie and there were all those other handicapped spots open if any more-deserving handicapped-er driver happened to need one. Or something to that effect.

I posted the letter like I post submissions to the New Yorker. I had very little hope my neurologist would buy my story, and even less hope that the State of CT would ever be conned into sending a real honest to God handicapped parking permit to a healthy person like me.

Once I sent the letter, I forget all about it. One day insultingly soon thereafter, I got a package in the mail from the State of CT.

My six-year-old son watched me pull the handicapped decal out of the envelope. There it was, the icon in the wheelchair.  I very much aware I was being watched.

“Good news!” I cried. “I got a handicapped parking decal.”

My eyes went to the expiration date.

LIFETIME

That meant I would never have to apply for another handicapped decal.

LIFETIME

That meant I was officially handicapped for life.

My son’s eyes had gone wide. He stood transfixed on the staircase, studying me. “Are you sure that’s good news, Mommy?”

“Of course it’s good news.”

Already, I was thinking that LIFETIME bit would some day seem ironic. No way would I would I be handicapped for life. There would be something, some medication that would stop the T-cells from turning into zombies. Some medication to fix all the damage in my brain. I would take it, me and all the other brain damaged people, and everyone else would be jealous of us. We would turn into some superior race.

That very afternoon, I drove my son to his favorite place in the whole world, The Peabody Museum. We got to park directly in front, instead of having to park in the lot two city blocks behind the entrance. Which meant Mommy got to stand by his side a whole ten minutes longer in the Great Hall of Dinosaurs. It didn’t take me too long to figure out that we’d missed out on many many ten minute increments of our precious time together in all the years I’d been too proud, or worse, too vain, to apply for a handicapped permit.

It took me until tonight to figure out the real villain in the story of the wisdom tooth fluke. It wasn’t the orderlies who wanted to leave us in our wheelchairs at the edge of the icy parking lot—and by the way, I did not let them get away with that. No. I was angry at them, really angry, but maybe because, deep in my heart, I already knew the real villian in the Wisdom Tooth story was me. I’d been one to park the car at the back of the freaking icy lot. All because I’d been too proud…or worse, too vain, to break down and admit I was a handicapped person, who needed a handicapped parking space.

But I’m not going to get too harsh on myself.

The objective truth of the matter is, nobody wants a handicapped parking space.

Since our family moved to Cincinnati, our car has been broken into four times.  The first three times, the thieves took the GPS, and left the handicapped-parking permit untouched. It was almost insulting. I’ve gone through hell with Multiple Sclerosis, and all I’ve got to show for it is a lousy Handicapped Parking Permit.

It has to be worth something, right?

This weekend, a thief finally agreed with me. Whoever nabbed the thing validated my observation that a handicapped parking permit is actually worth quite a lot. This time around, I won’t be wasting eight years hemming and hawing and handwringing before I get around to applying for another handicapped parking decal. I’ve already downloaded, printed, and filled out the form.

As for a letter to my neurologist? I think this one will do.

author’s note: I tried to get away with using an earlier version of this story based on my blog post, “Expiration Date.” That version only runs about three minutes. The producers, Dave Levy and Jeff Groh, wanted something that ran at least ten. They very patiently endured my objections, as a writer, that I could tell only the essentials of my story, that an extra seven minutes would be just fluff. And then they helped me dig deeper, and mine the many comic possibilites I’d been too blind to see.
Jeff and Dave, this one’s for you.

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A Wheelchair in Paris

True confession: I hesitated about renting a wheelchair in Paris, because that would put me literally beneath Parisians, and yes—I’d been gullible enough to believe all the hype about Parisians being arrogant snobs. This misconception evaporated on the bus ride in from the Charles de Gaulle airport. I looked around, and saw people who reminded me of another slandered tribe, the New Yorkers. I was born a New Yorker. I’d always laughed at people who were too chicken to visit New York City. Oh, my. It was time to laugh at myself. I’d been as terrified of Paris as any Manhattan-fearing yokel from upstate.

My early years in the Bronx were replete with lectures about how to appear street-smart. I’d known since before I could walk by myself that you were never walk around a city street with an open map. Before we left for Paris, I read the warnings about gypsies attacking tourists near metro stops. When my more trusting, Midwestern-raised husband opened a map near the bus terminal at Charles de Gaulle, a woman with a head scarf approached us…and offered to help us find our way to the correct stop. My pocket was not picked. But my false pride was pricked.

I would put off renting a wheelchair until after a side trip to visit my friend Laura in the French Riviera. There I found I was able to walk most of a mild 2k loop through the glowing inner sanctum of gorgeous Nice.  My legs went all heavy and numb before we’d quite made it to the parking lot just past the gazzillion dollar yachts, which left Laura in the uncomfortable position of having to dash off for her car, and pull up for me in the middle of a very busy street. After that incident, my husband asked Laura for translations of a few handy phrases. How do you say “multiple sclerosis” in French? How do you say,”wheelchair”?

Once we rented the wheelchair, we were able to see much more of Paris than we would have if we’d constrained ourselves to my current level of mobility. One of the many charms of Paris is that it’s a walkable city. As it turned out, Paris is also fairly wheel-able. There are cut corners at nearly all the intersections in Paris, and not nearly as many cobblestones as I had feared.

The sidewalks weren’t much of a problem with a wheelchair. What about the Metro? That wasn’t too tough for us, either. If I’d been on my own, I would have taken advantage of the law that states that taxi drivers are required to assist the wheelchair-bound. But since I had my husband and son to carry the wheelchair up and down the Metro stairs, we went that route, instead. I decided not to worry about what Parisians thought of me getting in and out of the wheelchair at the staircases. As it turned out, Parisians did wave and shout at us—but only to gesture us toward the subway elevators. So as not to paint too rosy a picture, I admit those elevators smelled of piss. But they were there. Not on all lines. But on some.

As it turned out, a wheelchair in Paris became something of a perk. My husband and I were shown to the beginning of every line at every museum, and qualified for free admission, just like our 15 year old son.

My favorite wheelchair moment occurred on the Eiffel Tower. After we took in the views from the platform, my husband, son and I waited on line for the elevator back down. It looked from my humble, wheelchair bound vantage point that elevator was full by the time we got to the door. My husband waved the elevator on. Then the nicest thing happened. The people in the elevator shifted, and stepped back, forming semi circle just big enough to include the three of us. My husband went ahead, and wheeled me on. I wished, at that moment, I could be eye-level with all the grownups, to thank each and every one, but it was nice enough to just be eye level with the kids.

The city I’d always assumed would snub me was instead a place of welcome and accommodation. Yet another useless fear discarded.

(This replaces “Ms. Lab Rat Loves France.” Sorry, subscribers: I don’t know how the final draft emerged with a headline, and no text. One clumsy move on an unfamiliar cell phone?)

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How to Take a Fall

When I was a child, my parents would take us girls hiking in Sleeping Giant Mountain with the regularity of the devout. Weekend after weekend, without fail, we’d hike the same old wooded trails.
One afternoon, when I was maybe nine or ten, I scrambled off the trail and up a ruddy rock face. I craved a change of perspective. Why not go vertical? I liked the challenge of having to figure out where to place each hand and foot.
Did my mother call after me?
I’m certain she did.
I am just as certain I pretended I was too high up to hear her. I was higher than my Dad, and he was six foot four. That would put me pretty much on top of the world.
In my family, there was nothing more gratifying than eliciting my mother’s panicked call. The terror in her voice was always music to our ears. Typically the surest way to achieve this lofty goal was to scramble up all four levels of the “castle,” the stone tower at the summit of Sleeping Giant, and hang off the overlook as far as you dare, pretending to take in the view of far-off New Haven and maybe the distant sparkle of the Long Island Sound.
This particular rock face was at the base of the mountain, yet already I’d managed to stoke my mother’s fear of heights. Most excellent. I’d beaten my sisters to it. I half expected they’d be scrambling up after me, ostensibly to set things right.
Let them try.
It wasn’t all that easy, scaling a rock face. One false move, one careless grasp on a loose rock, and my little sibs would go tumbling down. Only I had the courage, only I had the brain power, only I had the grip…
Only…
I slipped.
Time slowed down for this humbling event, just as obstinately as Time speeds up for ice cream cones. Once I lost my grip, I didn’t bother to grab for an anchor to break my fall. I tucked in my chin, and curled up in a ball.
My highest priority was to protect my eyeglasses. By the tender age of nine or ten, my unassisted eyesight was already vague and amorphous, kind of Van Gogh Starry Nightish, but without all the detail. My eyeglasses meant everything to me. They were the essential component for both my physical survival and my complete social annihilation. This was the 1970’s. The fashion—I am using this term loosely—of the day embraced the notion of ‘bigger is better’ for eyeglass frames. This notion was wrong. Flat out wrong. But no matter how patiently the ophthalmologist explained that choosing bigger frames would result in thicker lenses, I adhered to this misguided trend. As a result, the lenses of my eyeglasses were easily half an inch thick along the edges, which meant my peripheral vision was absurdly distorted. Even with the distortion, seeing through glasses as better than seeing hardly anything at all. So no, I wasn’t about to lose those odious looking glasses. Not in this fall.
Down I tumbled, curled up tight, and tucked myself in with all of my might. I rolled over rocks, roots and mosses alike. What was a little bump…or a big bump…a little scrape…or a tear…just so long as my glasses were spared?
I was not the type of child to tumble down a rockface and let a pebble go unnoted. I must have registered every indignity allotted to me on my journey down. Imagine my surprise, then, when I finally found my feet after my fall…and discovered I had somehow lost my glasses in the process.
Now that made me sore.
My father was crowing, “Congratulations! That was perfect! You really know how to take a fall!”
My mother was cooing and pulling the leaves from my hair. I wasn’t looking for praise, or even consolation. I was looking for my glasses.
“Where are my glasses? Has anyone seen my glasses?”
My sisters sprang into action, vying for the chance to save the day. My mother plucked my glasses off a sprig of mountain laurel. I snatched them out of her hand, and immediately tried them on. There was a scratch on the right lens.
“There’s a scratch!” The lens would have to be replaced. I had failed.
My father said, “One lousy scratch. And only on your glasses.” I didn’t understand. Shouldn’t he be upset? He’d have to pay the optician. “You’re gonna do well, kid. You’ve got what it takes. The trick to getting through life is knowing how to take a fall.”
In the sixteen years since I was diagnosed with multiple sclerosis, my parents have since seen me face many a fall.
Scaring Mom just isn’t fun anymore.

I can offer my parents one consolation. They can think back to that afternoon on Sleeping Giant. Their oldest daughter knows the trick to getting through life. They can be certain I know how to take a fall.

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Ms. Lab Rat, Revealed!

Ms. Lab Rat had a blast reading Expiration Date at the Clifton Cultural Arts Center on Tuesday, March 11.

Ms. Lab Rat will next be performing at the Know Theatre on April 11. If you would like to join us for an evening of storytelling on the theme of trueFoolishness, you’d better act fast. The event should sell out by the end of the week. UPDATE 3.19: THIS EVENT HAS SOLD OUT! YOU READ IT HERE FIRST. (unless you didn’t)

http://www.knowtheatre.com/shows/truetheatre.html

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The Game of Life with Multiple Sclerosis

I woke up this morning with a great idea for new board game. I’ll call it: The Game of Life with Multiple Sclerosis.
The board game would be in the shape of a circle, the circle of life. There will be three concentric circles within it; three tracks connected by chutes. The outside circle is the longest. At about 45 degrees, the spaces within the circle change color, from Green to Red. Once you hit the Red spaces, you have entered the territory of Relapsing/Remitting Multiple Sclerosis. From now on, every time you roll an odd number in this territory, you have to draw a card from the Symptom Deck. This deck is quite thick. The Symptom Cards include:

Vision Loss (apply blindfold, included. Request assistance from Strong Alliance)
Weakness (roll your next turn with only 1 dice)
Sensory Symptoms (lose 2 Happiness Points)
Pain (lose 10 Happiness Points, lose a turn at forming Weak Alliances)
Bowel problems (lose 100 Pride Points, lose 60 Happiness Points, lose 1 Weak Alliance)
Bladder Problems (lose 10 Pride Points, lose 20 Happiness Points, lose weakest Weak Alliances)
Fatigue (miss a turn)
Loss of Balance (lose 50 Pride Points. One mis-step off the board. Request assistance from Strong Alliance)
Sexual Dysfunction (lose 100 Pride Points, lose the strongest of the Strong Alliance)
Mood Dysfunction (lose 100 Happiness Points, all Pride Points per turn, deduct 10 points from strength of all Alliances)
Cognitive impairment (regain all Pride Points, lose all Alliances)

Are we having fun yet?
As long as you are in the Relapsing/Remitting territory, you can discard each of these Symptom Cards after one turn. Phew. Unless you roll doubles on your next turn. Then you have to keep that Symptom Card until the end of the game.
There is one consolation. A Symptom Card loses half of its power over Happiness and Pride after the initial impact, because the novelty wears off, and the player adjusts.
If you collect too many Symptom Cards, you slide down a chute, and you spiral into the middle circle.
The middle circle is the Secondary Progressive section of the game. All these spaces are blue. As before, you have to collect a new Symptom Cards every time you roll an odd number. The difference is, you can’t discard it when your turn is over. Collect too many Symptom Cards, and you spiral into the inner circle.
The inner circle is the Primary Progressive loop. It’s the smallest circle, with the shortest life span. All these spaces are purple. In this section, we collect a new Symptom Card on every turn. If we roll doubles, the effect of the new Symptom Card doubles.
OK. Who wants to play?
Anyone?
Anyone?
The game I’ve just described is pretty much the landscape I was presented with at my initial diagnosis.
Did I want to play? No way.
To ease my mind, my neurologist presented me with the Drug Cards.
The Drug Cards were pitched as the ultimate accessories in the Game of Life with Multiple Sclerosis. If I rolled a high enough number while in possession of a Drug Card, I could take a pass on collecting a new Symptom card. With a Drug Card, I could potentially skate above the Secondary Progressive and Primary Progressive territories, and win the game.
There was a catch. Each Drug Card comes with Side Effects.
The Drug Cards I was presented with were as follows:

Avonex: 10 Happiness Points for taking control minus 1 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:
Headaches (deduct 50 Happiness)
Flu-like symptoms (deduct 100 Happiness)
Muscle pain (deduct 100 Happiness)
Weakness (deduct 50 Happiness)
Nausea (deduct 10 Happiness)
General body pain (deduct 100 Happiness)
Fever (deduct 10 Happiness)

Betaseron: 10 Happiness Points for taking control minus 1 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:

Skin reactions at the injection site (deduct 1 Happiness)
Flu-like symptoms (deduct 100 Happiness)
Weakness (deduct 50 Happiness)
Headaches (deduct 50 Happiness)
Pain (deduct 100 Happiness)
Muscle pain (deduct 100 Happiness)
Insomnia (deduct 50 Happiness)

Copaxone: 10 Happiness Points for taking control minus 2 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:
Pain (deduct 100 Happiness)
Redness (deduct 10 Pride)
Infection (deduct 10 Pride)
Inflammation (deduct 10 Pride)
Itching (deduct 10 Happiness)

Once you choose a drug, you gain 100 Pride Points. You also gain Side Effects. With each Side Effect, you lose 10 Happiness Points and 10 Pride Points. Once you’ve earned your Side Effects, you roll the dice to see how effective your Drug Card really is. The higher the Effectiveness roll, the higher the likelihood you won’t have to draw a Symptom Card, and the higher the Happiness Points will be. Unfortunately, after a few rolls, you find you can’t roll two dice anymore. You roll one. Soon you discover your Drug Card isn’t that effective. You find yourself drawing from the Symptom Card deck.

Spoiler Alert: I’ll tell what I’ve discovered about the Drug Cards I was dealt in the early years. They are all useless.

This is only one of the many startling revelations you will encounter in the Game of Life with MS.

You discover at some point in the game that the Pride Points are worse than useless. Pride Points detract from Happiness. You discover Weak Alliances are also potentially useless. You can convert Weak Alliances into Strong Alliances, but only if you play your cards right.

For every five cards you are dealt, good or bad, you gain access to one Wisdom Card. Those Wisdom Cards come in handy. Wisdom Cards become your currency. You’ll need some currency, because all your money cards fly out the window after the Drugs. If you accumulate a big pile of Wisdom cards, you can share them with other players when they hit rough spots, thereby creating more Alliances. There will be times when you will need Alliances; you never know when you might draw a Vision Loss Card, and have to wear the blindfold, or a Balance Loss Card, and need a nudge back on the board. Alliances give you Happiness Points. When your Alliances help you out, they get Happiness Points, too. The longer you are in the Game, the stronger your Alliances become. Turns out, you can keep on earning Alliances from any territory on the board, though the smaller the spiral, the harder it is to gain a Weak Alliance. But once you gain one, there is also more potential for it to form into a Strong Alliance. It all depends on how many Wisdom Cards you and the other player have accumulated between you.
Those Wisdom Cards, and those Strong Alliances, they give you Happiness Points. Oddly enough, I’m starting to learn you could potentially wind up with more Happiness Points in the purple section, Primary Progressive, than some players starting off in the green. But that’s only if you play your cards right.

What kind of game is Life with Multiple Sclerosis? At first glance, it’s a game of chance. But the longer you are in it, the more you learn it is also a game of endurance.

Would I play the game of Life with Multiple Sclerosis if I didn’t have to? Hell, no. But I’m not ready to fold.

Look here. I finished another blog entry. I earned another Happiness Point. I hope you did, too. This game’s not over yet.

http://multiple-sclerosis.emedtv.com/avonex/avonex-side-effects.html

http://multiple-sclerosis.emedtv.com/betaseron/betaseron-side-effects.html

http://multiple-sclerosis.emedtv.com/copaxone/copaxone-side-effects.html

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Visualization 3.0

My third draft of the Visualization essay, with thanks to Jeff Groh for coaxing out another thread:

For all my adult life, I’ve done my best not to be defined by multiple sclerosis (MS). It’s easiest to escape other people’s pity, and other people’s judgments, if they don’t know I’m disabled in the first place. Because I have relapsing/remitting MS, most of the time I can still get away with passing for a Normal. But only to the untrained eye.
No matter how gracefully I walk into a neurologist’s office for my annual evaluation, the dreaded heel-to-toe test invariably punctures my façade.
As soon as I place one heel directly in front of the other foot, I start to sway. My arms float up, like a gymnast…a gymnast on the Titanic. I tilt toward the left. I regain my balance…for one brief hopeful moment. I tilt toward the right. My legs start to buckle. Then twist.
It’s all very suspenseful.
Inside my atrophied little brain, I’m reminding myself of all these tricks I’ve been taught at yoga. I press into all four corners of my front foot. I root down into my tail-bone. I lengthen my spine. Oh yes. I breathe.
I lift my back foot. Gently swing it around my front foot. Start to set it down…
Oops.
Not again.
I tilt toward the right. A little too far. I break my fall…by breaking out of heel-to-toe.
Inside my atrophied little brain, I’m thinking that losing my balance is all my fault. I wasn’t…yogic enough. I didn’t make the right mind-body connection. Of course! Mind-body connection! Why didn’t I think of it sooner? What I should have done was visualize myself walking down the hallway.
Visualization. That’s the ticket.
I request another try.
This request typically inspires a panic.
“Oh, no, no, no. That’s fine. You don’t have to do that one over. I’ve seen enough.” And I wind up feeling like an out-of-work actor who has just asked for a re-try on a crappy audition.
The first time I took the heel-to-toe test, I made a lame joke. “I guess my tightrope walking days are done.” The joke fell flat. My stand-up comedian days were dead-on-arrival. Fine. I don’t want to play the role of the wisecracking patient with multiple sclerosis. I don’t want to be in that sitcom. Or even on that channel. I’d rather be on the yoga channel, floating two feet above the gleaming wooden floor without even noticing, a tiny, enigmatic smile on my placid face.
Yeah, right.
As soon as I got diagnosed with multiple sclerosis, I got it into my head that I could fight off the disease by learning yoga. My first yoga instructor told me I was being unrealistic. That was sixteen years ago. A lot of people with MS don’t last this long without ending up in the wheelchair. Maybe I’m still walking because I have a more mild form of the disease. Or maybe I’m still walking because of yoga.
I wish I knew. I just can’t say. I don’t have a control group; a clone or a twin sister with multiple sclerosis who thinks yoga is a complete waste of time.
What I can say is that my expectations for my balance are consistently higher than my performance in the heel-to-toe test.
My performance in my normal daily routine can be fairly convincing. I pass for a relatively fit healthy woman at least 90% of the time. In public. Before 8 pm. But still. I’ve got a good façade going. I’m fond of it. I don’t want that façade punctured. Which is why I don’t like the heel-to-toe test. Not one bit.
I never thought I could ever meet a person who could make my objections to the dreaded heel-to-toe test seem petty. That was before I met Dr. X.
I wasn’t supposed to be meeting Dr. X in the first place. My appointment was with Dr. Y. It so happened that Dr. Y was running behind, so she sent in a resident. Into the examination room wheeled…a black man…in a wheelchair. To see me: a white woman who felt irked every time she was asked to take the dreaded…never mind.
The instant I saw him, I realized I was operating on a cruel assumption…the assumption that losing my balance was a failure of my willpower, rather than just a manifestation of a cruel disease. I would never assume that this neurologist was a failure for being in a wheelchair. Why then, did I consider myself a failure for flunking heel-to-toe?
When Dr. X had me take the heel-to-toe test, I failed it, as usual.
But this time, failing the heel-to-toe test felt fairly privileged. At least I wasn’t stuck in a wheelchair. Dr. X would trade places with me in a flash.
Or would he?
Was Dr. X’s life really all that bad? Is mobility, or lack thereof, the decisive factor in anyone’s quality of life?
As we chatted afterward, I came to see that Dr. X’s life was actually pretty good. He was nearly done with medical school. He was on the verge of a lucrative career. He had a job lined up for him in his home state, where he could live near his beloved family of origin. His upcoming move wasn’t all he was looking forward to; he was getting married in a few weeks. His honeymoon plans included snorkeling in the Caribbean.
My atrophied little brain thought it appropriate to mention a book I’d just read, The Body Has a Mind of Its Own. I enthused about the data showing that visualization could improve sports performance, and shared my plans to visualize walking down my staircase without using the banister.
Dr. X’s response? “Use the banister.”
I take it Dr. X doesn’t visualize leaping out of his wheelchair. Or passing heel-to-toe tests. Dr. X is more focused on what his brain and his body can actually do. I’ll be the first to concede, his brain and his body can do quite a lot. So much for visualization. Maybe there’s something to be said for looking around, and seeing the world clearly. The world is a beautiful place, from any perspective. I bet the world looks spectacularly beautiful while snorkeling in the Caribbean.
Altogether, I left my examination with Dr. X a little less fearful, and a lot less judgmental, about the likelihood of my ending up in a wheelchair. I figured I was done freaking out about flunking heel-to-toe.
The funny thing is, the next time I took the heel-to-toe test, I did pretty well. When it was time to begin, I looked down the hallway, and thought, screw visualization. But some habits die hard.

I automatically deployed those tricks I’ve learned at yoga. I rooted down into my tailbone. I lengthened my spine. I breathed.
I pressed into all four corners of my front foot. I lifted my back foot. Gently swung it around my front foot. Set it down…
I didn’t tip.
I just kept on going.
One step. Two steps. Three. Four.
One foot in front of the other. Like any Normal would do it. Five steps. Six. Like any Normal moron. Seven.
My legs buckled. I swayed.
Eight.
I had to break out of it, or fall.
Old habits die hard. I called to my neurologist, “Sorry!”
And felt instant self-loathing.
My neurologist tilted her head. She looked puzzled. “What do you have to apologize for?”
Exactly.
Would Dr. X apologize?
I don’t think so.
“You’re right.” I agreed. “I have nothing to apologize for. So I flunked the heel-to-toe test. I have MS.”
She was still looking at me funny. “Actually, you didn’t flunk it this time. Your score was perfectly normal.”
Normal! Precious Normal!
That was just what I wanted, right?
Instead of feeling satisfied, I felt chagrined. I will only truly pass the heel-to-toe test when I don’t define myself by the results.

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My Gut Feeling About MS

Security is mostly a superstition. It does not exist in nature,
nor do the children of men
as a whole experience it.
Avoiding danger is no safer
in the long run than outright exposure.
Life is either a daring adventure, or nothing.
–Helen Keller

Once upon a time, I was a wholesome, healthy, teenage girl. There was nothing I would rather do than backpack with my family in the forest, and nothing I would rather drink than pure, rushing river water.
Little did I know that nothing in nature is pure.
I discovered early on in our family’s backpacking adventures that the appearance of water is deceptive. I had only to fill my canteen to learn that water, while as clear as air, is nowhere near as light as air.
I should have figured right then that there is more to water than meets the eye. But I didn’t. I didn’t understand that water, essential water, delicious water, could kill me. The water from the streams tasted so much better than the water from the tap. How could it not be better? Purer? Safer?
Instead of following that old backpacking mantra, Take nothing but photographs, leave nothing but footprints, I took home a bellyful of worms I’d sucked down with that pure, rushing river water I’d found so delicious. Once those worms found their way into my digestive track, they began to wreck havoc.
Those little squatters would devour over three month’s worth of progressively blander breakfasts, lunches and dinners. Every one of “my” meals would be followed by violent, punishing diarrhea.
Life with these new parasites was ugly. Really ugly. In the course of three months, I was reduced to a (barely) living skeleton. I had to drop out of school, and rely on visiting tutors. As I became progressively weaker, I would have to send my tutors home early; sitting up for more than fifteen minutes at a time became too strenuous a challenge.
At one point during the parasitic occupation, I had a nasty reaction to an antibiotic. My esophagus contracted. I did not like that sensation. I thought I was having a heart attack. I remember my dad driving me to the hospital, reaching 50 miles an hour in a 35 mph zone. I was touched by his efforts, but I found them unnecessary. I’d had a nice life, if a short one; a loving family, gorgeous scenery, delicious water. I was ready to die.
In a less developed part of the world, I probably would have died, if not that day, then soon after. I certainly would not have reached adulthood. But as it happened, my dad was speeding me toward the teaching hospital at Yale University. The hospital would eventually connect me to an IV to boost my nutrition. They would treat me with an all-purpose parasite-killer. I would survive. The worms would die.
It was a real Ivy-league outcome. A victory.
The odd thing was, even after the parasites were killed, I never felt fully recovered.
I would live to adulthood, but it would be an adulthood with multiple sclerosis, a degenerative, debilitating autoimmune disease. Was that better than the alternative?
You bet.
Back when I was ready to die, I’d had no idea of all I would have missed. Instead of feeling serene, I would have felt really sorry for myself. Life is good. Even life with MS.
If you’ve been paying attention, by now you’ve probably reached the following conclusion: worms are bad. That was my assumption, too.
Imagine my surprise, then, when my friend Martin, a neuroscientist, sent me an article from The Annuals of Neurology, Association Between Parasite Infection and Immune Responses in Multiple Sclerosis (1), which observes that in the battle against multiple sclerosis, worms are…good.
The study compared multiple sclerosis patients who had naturally occurring parasitic infections to multiple sclerosis patients without parasites. The patients with parasites showed significantly less neurological damage over the course of four and a half years than the patients without parasites. Apparently worms are good for something. They keep autoimmune malfunctions in check.
At first, I resisted this data. I’d hosted more than my fair share of parasites. Those nasty little worms hadn’t kept me from contracting multiple sclerosis. But on second thought, I realized I hadn’t been a very nice hostess; I’d served up some heavy-duty all-purpose parasite killer. All the creatures living in my gut, good worms or bad worms, had been effectively wiped out.
Until I read the article, I never thought that was a problem. But now I do. This is why. Human beings have been co-evolving with parasites for millennia. It’s only recently that we’ve acquired the ability to produce heavy-duty all-purpose parasite killers like the one that saved my life. And it’s only very recently that we are beginning to realize there could be a trade-off. Tiny studies of disparate autoimmune diseases are all reaching the same conclusion; the immune system is regulated by the worms in our gut. (2)
Epidemiological data supports these findings. There is almost no incidence of autoimmune diseases like multiple sclerosis in the developing world, where modern standards of hygiene have not yet impeded on the dark, fragile ecosystem we prefer not to discuss in polite company. (3)
Biodiversity may be endangered in an ecosystem we rarely stop to think about. (4) This may have far reaching consequences for our health.
As I learn more about the immune protective function of microscopic intestinal life forms, I have come to regard that heavy-duty all-purpose parasite killer I took so many years ago as a blunt weapon; a weapon of mass destruction. It may have spared my life, but by wiping out the diverse life forms in my gut, it may also have incidentally left me vulnerable to developing multiple sclerosis.
I am grateful that I didn’t die that long ago day when my father rushed me to the hospital. Dying very young and very thin is still the only option for far too many children in undeveloped nations. This remains unacceptable. But can we offer a better alternative than a longer lifetime with a debilitating disease?
I think those of us in developed nations should pause to investigate whether we have been trading one set of diseases for another. I expect we can find a third way; a way to preserve and/or reintroduce those worms that have co-evolved to boost our immunity.
A few bold researchers are investigating this option. The National Multiple Sclerosis Society is funding a study in Wisconsin to measure the safety and effectiveness of helminth (worm) therapy. http://clinicaltrials.gov/ct2/show/NCT00645749

This research gives me a lot of hope. We still know so little about Multiple Sclerosis; it’s encouraging to see work being done that has potential to address a cause. I have a gut feeling that they are on the right track.

Sources:

1. http://www.direct-ms.org/pdf/HygieneMS/Parasite%20infection%20MS%20Annals%20Neur%2007.pdf
2. http://www.the-scientist.com/article/display/57941/#ixzz1EWTokRoL
3. http://en.wikipedia.org/wiki/Hygiene_hypothesis
4.http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2474
Further reading:
http://evmedreview.com/?p=92
Do worms protect us against autoimmune diseases? The epidemiological evidence is strongly suggestive.

http://en.wikipedia.org/wiki/Helminthic_therapy
Helminthic therapy, a type of immunotherapy, is the treatment of autoimmune diseases and immune disorders by means of deliberate infestation with a helminth or with the ova of a helminth. Helminths are parasitic worms such as hookworms and whipworms.

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Fiction: Flatten the Hills, Inflate the Valleys

This short story of mine was published in River Styx. It has nothing to do with multiple sclerosis. I wrote it back when my fingertips tingled painfully every time I used a keyboard. ‘nuf said.


Flatten the Hills, Inflate the Valleys
BEING LOST gives Tanya a real thrill. She’s told me that, and I’ve heard her say the same to others. I’ve heard her tell the truckers she gets herself deliberately lost, that when she finds a street she realizes she’s never been down before, and she suspects she doesn’t know where it ends, certain fluids are secreted by certain glands, and she’s off, cutting through four lanes of traffic if she has to, so she can take that mysterious left. And if that street leads to another unknown street, her tires will squeal with delight.
The truckers tell her how they like their eggs: sunny side up, scrambled, over easy, over hard. She tells them how she likes her streets: curvy, diagonal, irrational, inexplicable, illogical. She says that she despises the dead end, the parallel, the numerical. And how there’s nothing more disappointing than a hint; the east, north, south, and west streets, roads, concourses and boulevards.
Some of them ask her, you from around these parts?
These parts are upstate New York.
Hell no, she says. And I’m cutting out of here just as soon as I can’t get myself lost no more.
Tanya puts a little Dixie lilt into her voice when she’s really going for a tip. Those times her voice gets sexier than any wag of the fanny. It drives Rhonda, the other waitress, crazy, and not with desire. Tanya might’ve gotten lost in a lot of places, but by her own admission, she has never wound up in the South.
I’m the busboy at the Big Eats. Invisibility is my job and my vocation. When Rhonda gets too irate from hearing Tanya’s manufactured accent, I duck under the counter and collect another plastic tub of filmy dishes so I can dodge Rhonda’s eyes, indignant irises purpling with rage, pupils pursuing confirmation from mine that indeed, this time my beloved Tanya has gone too far.
What Rhonda would’ve known, if she really listened to Tanya’s stories, is that Tanya can never go too far. This is Tanya’s nightly lament. There is no moment more dreaded than the inevitable recognition of a flagpole, the sudden emergence of a tattletale water tower, or the blunt intrusion of an interstate highway on some windy, dusty, no name road. Her mind immediately constructs a line between two points: the offending flagpole, water tower, interstate, or what have you, and her own driveway. This line, however crooked it may be, has a beginning and an end. Her brakes squeak with humble acquiescence, her turn signal clinks with disappointment, and she’s on her way home again.
Sometimes Tanya visits me while I load the dishes. Other waitresses have tried that in the past, and I’ve scared them off by singing portions of the Faust opera in my most strident baritone. Tanya doesn’t scare as easy, so I let her stay. We’ll share the serenity of the steam until Rhonda hollers that Three is up, or Danny, that’s the owner, walks by one too many times, saying nothing. Tanya likes the dishroom, likes to hum along with the deep, solemn lullaby of the dishwasher. She even likes to peer through the greasy diamond shaped window to the front room. I think she understands how this dishroom shelters, even nourishes me.
I asked her once, why not just ignore the landmarks, drive on, and get lost again?
She shook her head, and said nothing. I could have told her the answer. For Tanya, to be lost is to be under the delicious spell of the unknown. With the invasion of the known, the spell is broken.
Tanya has lived here for almost three months. I don’t know how long it will take her before she’s exhausted her possibilities, before each mark will become a landmark, and it will be time for her to move on again. I want to smear paint over every street sign. I want to bend the rivers for her, flatten the hills, inflate the valleys.
When I first moved to this village, two years before Tanya’s arrival, I fell hard for Rhonda. I’d picked the location at random, and brought nothing with me but my weights, ten crates of books, my VCR, and 300 or so videos. No family photographs, no letters, no address book. The first place I went was the Big Eats, and Rhonda was the first woman I saw. I was after her body, I admit, those hard, bulging calves, that powerful ass of hers, those upright breasts causing such delightful tension in her stiff uniform. I filled out my application, all three lines – name, phone number, and felonies – while fantasizing about loosening Rhonda’s lustrous black hair from her rigid bun. I wasn’t after her to marry her, or even to talk to her. I just wanted to be able to watch her walking around in that tight, starched uniform of hers. Honest.
Tanya, on the other hand, isn’t much of a looker. She’s kind of dumpy, her butt sags, and she’s got a gap between her two front teeth, upper row. She doesn’t wash her hair too regularly, and it separates and dulls after a time.
There couldn’t be two waitresses more different than Rhonda and Tanya. They’re both top–rate; it’s a difference of style. Rhonda’s down to business. The regulars prefer her, because she always knows exactly what they want, will get it to them nice and hot and with no fuss, will ask them about their families if she likes them, will let them be if she doesn’t. She’ll reject a plate at a glance if she can tell that the yolk won’t break when they expect it to, and inform the cook how many seconds the eggs have left on the griddle. No one ever has to send back a plate, if Rhonda’s got them. People like that. And of course, she’s got a waitress’s best asset, as I’ve mentioned before. The rule with Rhonda is, look but don’t touch. People like that, too. Contemplating trouble is an end in itself.
Tanya works the other side of the spectrum: the clientele who come, not for the perfect, predictable egg, but for nourishment of the soul. An order will sit cooling on the hot plate in the time it takes to see all 14 wallet photographs of an out-of-towner’s grandchildren, as Tanya croons, why he’s got your eyes, doesn’t he, or, look at that wide forehead, it’s a sign of sensitivity, I hear. But no one in the restaurant will care, because pretty soon they’ll be gathering around to see those pictures, too, and to pull out their own. And if there’s some person left untouched, unconcerned about Bernie’s mother-in-law’s mastectomy, or whatever the topic of conversation may be, Rhonda will detect their dissatisfaction, even if she’s facing the opposite direction, like she’s got eyes staring out of her fastidious bun, and she’ll pick up their neglected plate, throw some extra slabs of bacon on it, and bring it right over. And while it’s true that, in tangible ways, Tanya leaves a lot of slack for Rhonda to pick up, it is beautiful slack, because it is slack created by something no less than love itself.
I ask Tanya, so what does it feel like for you, when you’re lost?
Her dimples enfold her face with bliss. It feels…her eyes squeeze close as the sensation overcomes her. It feels…her face flushes. Oh gosh, I can’t even tell ya, she says, though again she tries. It feels like…instead of words, a tiny little squeal emerges from her throat, or somewhere even deeper. She turns her head away, embarrassed. It just feels good, all right?

Rhonda called in sick one night, a slow night, the night of the big thunder storm. I’m shy around Rhonda, always have been. The sight of that fine behind of hers just silences me. With Rhonda out of the way for once, I could finally approach my beloved one, without fear of attracting any ridicule.
Tanya smelled wonderfully musty that night, like rain and dirt and leaves and grass, as if she’d been permeated by the storm. The travelers lingered, waiting for the rain to let up, and they shared anecdotes and revelations as Tanya poured them third and fourth cups of coffee. I hung back in the dishroom, like I always do, even though we had yet to accumulate a full load of dishes. I’m afraid of the front; I am looked upon with suspicion there. The truckers know I’m not their kind, and are unsure of whose kind I am. I kept the radio off and hovered by the doorway, listening, waiting for a chance to be alone with her, to make my proposal. Finally, she came out back to restock the sugar and the Sweet’N’Low.
I asked her, and even though it came out sort of hoarse and wobbly, she understood right away.
Why of course, I’d love to come to your place for dinner sometime, honey. Just name a date.
Sunday was the only night we both had off. I spent the rest of my shift constructing directions for her. I live off a ways from the Big Eats, out on an unpaved mountain road. It’s easy for folks to get lost, trying to find me. That’s what I would guess, anyway.
The next couple nights were torture. I kept trying to read Rhonda’s face, to see if Tanya had told her anything, but Rhonda’s face was as fixed and hard as stone. This was her usual demeanor, but I wondered if now it meant something. I didn’t dare search Tanya’s face. I didn’t even make eye contact. I held my breath every time I passed her, and concentrated on keeping my hands nice and steady, so I wouldn’t break any dishes. She asked me once, something wrong, honey? I said, no, nothing, and slipped away to the men’s room to get sick.
Sunday night has now arrived, and Tanya is two hours late. It’s working out just as I planned. I am standing by the window, savoring the moment. In my mind, I see the nearby roads that wind and twist and, thankfully, circumvent the road to my house, and I see them as she must see them, as mysterious, devious, terrifying, ecstatic. I turn each corner with acute anticipation, switch on my brights for the deserted stretches, search for the fictional signposts, driveways, dead ends, deaf child signs I have myself invented, for Tanya, for my love. I feel myself jolt on the potholes, feel my eyes strain with effort, and feel, yes I think I’m really feeling it now, that sensation Tanya had no words to describe. It is building up in me, overtaking me. I am lost in bliss.

It’s All in My Head (or maybe my spinal cord)

My neurogenic pain has always been a mystery to me.

I first felt a tingly sensation in my right foot during stop-and-go traffic in rush hour. I attributed the unpleasant feeling to an ill-fitting shoe. Except… my shoe fit fine. And why was I tingly only in my right foot? Why not my left? Who ever heard of going all tingly from pumping the gas and the brake?

I asked these questions of my boss, because my boss used to be a nurse. I figured she’d know what it meant. In retrospect, she probably did know what it meant. That must have been why she fired me.

The next time I asked about a tingly sensation, the story was even weirder. My fiancée had been reading me poetry in the bath, when suddenly that tingly sensation shot right up to my bra line. When I tried to get out of the bath, I dropped like a rag doll. For no apparent reason, I couldn’t walk. My guy had to help me to bed. In the morning, I was just fine. Why had I been tingly in the bathtub? Why was there that scary moment when I couldn’t walk?

The community health center doctor countered with questions of his own. Was the bath warm?

Of course the bath was warm.

Do you have insurance?

Was I in a community health center? Of course I didn’t have insurance. I’d just been fired.

The doctor wrote me a prescription for B vitamins. “I’m going to be very careful with how I write this up. I’m going to say you have a vitamin deficiency. You don’t want a pre-existing condition. When you do get a job with insurance, you’ll want to go to a neurologist.”

Did I want to go to a neurologist?

I guess I didn’t. That discussion took place in 1990. Even with health insurance, I didn’t make it to a neurologist until 1995. In the intervening years the funky experiences with pins-and-needles sensations kept piling up. There was no apparent explanation for my pain. All I knew for sure was that it wasn’t caused by a vitamin deficiency. Taking B vitamins hadn’t done a thing.

What drove me to finally see a neurologist? Sheer curiosity. It was weird, just plain downright weird, to experience pain without any apparent cause.

Once again, I told my story. This time, I would get an explanation in return. There were measurements I’d never dreamed of that revealed symptoms I thought could never be quantified. The pain I experienced in my legs did have a source. Multiple sources. My MRI showed lesions in my brain. My lumbar puncture showed lesions in my spinal chord. Oddly enough, the doctors could tell I felt tingling in my legs because of what I couldn’t feel; vibrations from a tuning fork.

It was all very validating, these proofs my pain was real. Not so long ago, a person like me would have been labeled a hysteric. Instead of being labeled a hysteric, I was diagnosed with multiple sclerosis. That’s progress. But at the end of the day, and more often than not, at the beginning and middle of the day as well, I am in just as much pain as my predecessors, the hysterics.

I’ve had enough. I am ready for more progress. Science has determined that my pain is real… by now science ought to find a way to get rid of it.

A few weeks ago, I happened to click my way to a four minute TED talk in which a researcher proposed to do exactly that. http://blog.ted.com/2008/03/25/christopher_dec/

Christopher de Charms uses the MRI to do more than document the existence of pain; he has his clients climb in the scanner with virtual reality goggles, and interact with their pain in real time. They can select the portion of their brain lighting up with chronic pain; and apparently they can be trained to release their own opiates to counteract it. By controlling their brain, they control their pain. DeCharms reports a 44-64% decrease in chronic pain patients. I want in, unless that means I will be decreased by 44-64%.

There were many issues a four minute TED talk can’t cover. I wondered if seeing a portion of my brain light up with pain would in fact make my pain more pronounced. And once I did see which part of my brain was active when I was in pain, how, exactly, would I release my opiates to sooth things over?

To pursue the matter further, I ordered and read DeCharms1998 book, Two Views of Mind: Abhidharma and Brain Science. In each chapter, DeCharms chats with Tibetan Buddhist teachers to deepen his understanding of the mind in Buddhist philosophy. I can see how his research of their study of mind led him to attempt to transform the Western study of the brain. Buddhism is based on systematic observation of the subjective; for generations, Buddhists have been observing the mind from the inside. As a practitioner of western science, DeCharms has access to the technology to visually access the inside of the brain; he recognizes that the Buddhists have the skills to know what to do once you’re there. From what I’ve learned in DeCharms’ TED talk, this appears to have been a fruitful collaboration.

I will be the first to admit that the pain I experience is not at all useful. It’s a misfire. My brain (or my spinal chord) is screeching PAIN PAIN PAIN. I’d love to teach it to sing a different tune. If crawling inside an MRI machine while wearing a pair of virtual reality glasses can do that, I want to give it a try. I value western medicine for proving my pain is real. I’m more than willing to value eastern medicine if it can help me make that pain go away.

 

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