Adventures

A simple dog walk exposes the fine line between faith and folly.

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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MS Mermaid

My son requested that I tell you the story of what happened the last time we were in Hanauma Bay:

Once upon a time, on an island not so very far from the equator, Mermaid opened her sea blue eyes and saw she was in trouble.

Earlier that morning, Mermaid had grown restless as her husband, Landman, and their son, Halfland, fumbled around the coral in their rented flippers. She shot off after a brilliant green parrotfish, leaving Landman and Halfland to doggie paddle in the shallows of the bay.

Hour after hour, Mermaid frolicked with bright and beautiful fish. She witnessed many wonders. But as time went on, more and more blubbery white Surface Creatures came crashing across the coral reef. As the bay grew crowded with  Surface Creatures, Mermaid grew restless yet again. She missed Landman and Halfland. She wanted to be with them, even if that meant climbing out onto the sand.

Mermaid was as clumsy on the silver sand as Landman and Halfland were clumsy in the water. Mermaid fumbled as far as a little palm tree, and then plopped down to shelter in its meager shade.

Mermaids never nap. But on this day, Mermaid’s frolicks must have worn her out. When Mermaid awoke, she was no longer lying beneath the slender shadow of the little palm tree. The shadow had shifted.

Mermaid was no longer sheltered from the Sun. And Mermaid was no longer alone.

A group of  Shade Seekers from the Far East were noisily unfolding their straw mats along the new angle of the palm tree’s slender shadow, chatting away as if Mermaid did not exist.

Mermaid did not understand the Shade Seekers’ culture, or the Shade Seekers’ language, but she had to be grateful for their bizzare proximity, and their incomprehensible chatter. Had they not been so close, had they had not been so loud, the Shade Seekers might have not have waked her. Had Mermaid remained asleep beneath the Sun, she may have napped her way smack into oblivion.

You see, all mermaids’ powers melt away in the heat.

Mermaid looked down at her lovely legs. She knew the heat of the Sun had rendered them as useless as a mannikin’s legs.

Mermaid gazed longingly at the sparkling sea; if she could only make it back, she would be safe from the heat of the Sun.

Mermaid turned to the Shade Seekers. The Shade Seekers did not meet her sea blue eyes. You see, Shade Seekers do not believe in mermaids. These simply pretended Mermaid did not exist. And even if Mermaid were to somehow convince the Shade Seekers that she did indeed exist, she still had no common language to explain her predicament.

All the while, the Sun beat down relentlessly. If Mermaid didn’t act soon, she’d lose control of more than just her legs; her sea blue eyes would cease to see.

Mermaid was feeling desperate. Her lovely legs couldn’t take her to the water. The Shade Seekers wouldn’t take her. Mermaid decided on a course of action. Since she could not walk to the water, she would have to roll there.

I will tell you a secret about mermaids. Mermaids are like you and me. They can not abide to lose their dignity.

Mermaid imagined that the Shade Seekers would start seeing mermaids as soon as they saw one rolling in the sand. That would give those Shade Seekers something to talk about.

Just then, Mermaid heard two beloved voices over the din of the Shade Seekers’ chatter.

“Mermaid!”

“Mommy!”

Landman and Halfland were running up the beach toward their lost Mermaid. They were so happy to see Mermaid, they forgot to be cross with her for swimming away. They understood immediately that Mermaid wouldn’t be going anywhere, not without their help.

Now, this was no ordinary bay, but rather, the crater of an eroded volcano, one that had sunk so low that the sea could sneak inside. Landman proposed he carry Mermaid to shelter on the crater’s rim.

The crater’s rim was a long way up. Mermaid wanted nothing more than to return to the water, and to her natural form.

Landman loved Mermaid. Landman wanted nothing more than for Mermaid to be whole again. Instead of carrying Mermaid to the crater’s rim, he carried her back into the water, and released her alongside the battered coral reef.

As the family expected, the ocean worked its magic on Mermaid. She was soon swimming as though she had never been pinned by the heat of the Sun. Landman and Halfland were happy to see their Mermaid restored, yet the entrance to the path to crater rim remained a great distance away. Mermaid refused to be carried there, and they all three doubted she could walk.

Halfland proposed they all swim toward the entrance. But Mermaid knew swimming would not be much fun for the boy. She urged Halfland and Landman to walk there, instead.

After all that had happened, Halfland and Landman were reluctant to leave Mermaid. But Mermaid had learned her lesson. From now on, Mermaid would not be distracted, no matter how colorful the fish. She would keep her sea blue eyes on Landman and Halfman, for those two were more precious to her than all the fish in the sea.

Landman and Halfland sloshed back to the shore, and Mermaid swam along in the sea. But they were still together, all three. They proceeded in parallel toward the path to the crater rim; Landman and Halfland walking on the beach, and Mermaid swimming in the bay. Mermaid’s gaze did indeed remain fixed upon Landman and Halfland. Those two were the most soothing sight her sea blue eyes could ever see.

Not even the Shade Seekers can tell you how Landman and Halfland managed to get their Mermaid to shelter on the crater’s rim, or how Landman, Mermaid, and Halfland have managed to stay together, happily ever after. There is much about a mermaid that must remain a mystery.

Commuter Drag

IMG_4232I am commuting today to the NIH for my monthly dose of MS medication. Look around the airport. You won’t pick me out. I am streamlined, like every serious commuter. I know which security line is actually the shorter one. I know the latest TSA regulations. I don’t flinch at the full body scanner. My boots are easily unzipped.
My red Chrome messenger bag is a red herring. I haven’t straddled a bicycle in over a year. Not since I kept falling off. But I can look like I still ride a bike. I can pass, at least for the outgoing flight.
I am not the one fumbling with her shoelaces, or the one in the wheelchair. I am not the one in that golfcart-like vehicle. I am not the one boarding the tram.
I am the one strutting to the gate.
I am not the one on the people mover. I am not the one on the elevator.
Whenever possible, I am not the one on the escalator. Whenever possible, I am the one on the stairs.
I am not the one sitting in the handicapped row.
I am not the one being offered the opportunity to pre-board.
I am the one who doesn’t look up as boarding is announced, who continues writing her notes by hand. No one needs to know I am a creature with brain shrinkage. That I’ve left my computer behind in too many taxis, too many times.
No one needs to know that on the way back, I may just be the one in the wheelchair, or the one in the golf-cart like vehicle. I may just give in and take the tram. I might take the elevator. I might accept an offer to preboard.
I am one of you. Until I’m not. Then I am of one them.
I am one of all of us. We each carry baggage. We each carry pain. Sometimes it’s visible. Sometimes it’s not.

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An Objective Answer

The first time a perfect stranger assumed my husband John was my son, I asked, “Do I look that old?”
In the awkward moment that followed, I realized I would never get an objective answer.
The second time a perfect stranger asked me if John’s was my son, I dismissed her “innocent” question as a perfect mind game.
Unless…
Do I look that old?
If John’s mother were alive right now, she’d be eighty three.
I am forty-three. I am older than my husband John, but not significantly older; I’m older by a year and a half. I ought to look like I could have been in diapers on the day he was born; not like I could have spent that day stretched out on a delivery table.
How painful.
It has been suggested that maybe the issue is not that I look old, but that John looks young. John still gets carded when he buys alcohol. If I can be comfortable with looking like the mother of our fourteen-year old son, why can’t I be comfortable with looking like the mother of man who is (mis)taken for under-twenty-one?
It doesn’t bother me that John looks young. It doesn’t even bother me that I look old…as long as we’re talking forty-three years old. It does kind of bother me that Multiple Sclerosis could make me look older than I really am; it just adds insult to injury. And it really bothers me is that there is no way to objectively determine if I look my age, or if I look older than my age.
Or so I thought.
Today I sought a piece of personal property every patient is entitled to; I requested my medical record. I had recently taken a trip to a specialist, and I needed to share his discovery with the doctors at the NIH, who must keep track of every event that occurs in my body while I am on their experimental drug.
I am always eager to read the notes my doctors take. I’ve learned a lot that way. One of my past doctors was either a poor listener or a poor note taker. He’d had me down for two to three alcoholic drinks a day, whereas I’d said I might sip from two or three alcoholic drinks a month. I had the office correct my record. I am a borderline social drinker, not a borderline alcoholic, and I didn’t want to be treated as though I had the additional illness of alcoholism.
When I got the notes from last week’s visit to the specialist, I slid them in a manilla envelope, but pulled them out again before pressing the button on the elevator. By the time the elevator reached my floor, I’d read that I’d moved to this city from New Hampshire. I kind of liked the image of myself as a lady from New Hampshire. I’d be more rugged, maybe, than a lady from Connecticut. Certainly less Italian.
On the elevator, I read:
General appearance: healthy, alert, no distress, cooperative, smiling, in no acute distress, appears stated age, alert and oriented x 3
Appears stated age.
Finally. The objective answer I’d been looking for. From a professional. And not a professional bartender either. A medical professional. Medical professionals, I well know, can be trusted to get the story straight.
I stepped out of that elevator smiling, in no acute distress, brandishing my precious envelope, the objective proof that I don’t look that old. I appear to be my stated age. I feel alert and oriented x 3.