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.

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

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

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.