The Big Move

I know just the moment I backed away from updating my blog; I’d gotten no further from the NIH than the Dulles Airport when an update on my blood work from the visit popped up on my phone. There were five categories where my numbers were off. This was a dramatic made-for-blogging opportunity. I could create a post wherein I could freak out. My readers could freak out. I could then contact my doctor and collect information to put the off numbers into context and — BOOM! — that could be the next blog post. Yawn.

I will—I promise—resume this blog at some point. I’ve missed some real opportunities for reflection during this current dry spell. But I’ve been distracted. By the vicissitudes of chronic illness, yes, but also by the demands of my increasingly enthralling writing workshops.

Loyal followers, here is a link to a story that was first presented to me seventeen years ago in my workshop in Connecticut, and which has now been published by Adelaide Magazine. The Big Move is a spellbinding work by Maria Frangakis about a young Mexican girl who has the audacity to be curious.  I know you will enjoy it.

Buses and Automobiles

Thirty years ago, I was introduced to a guy at a party who said he was a writer.  Reader, I married him. His non-fiction sketch, Bus Portraits, got published this morning by X-R-A-Y Literary Magazine. The physicality  of this piece knocks me out. And yes, it does belong on a blog about disability.

Tom Grogan, a writer in my Tuesday workshop, recently wrote an eloquent essay about the pain and loss he felt when he gave up driving. It was published by the Cincinnati Enquirer.

As far as I know, the two men have never shared a bus ride together.



30 Days Later

You would think , after twenty one years of being an MS patient, I would  have developed some cross-disciplinary skills, and also know how to be a decent opthamology patient. The most valuable lesson I have learned as a patient: Don’t Panic! The second-most-valuable lesson: Ask Questions. And if you don’t like the answer, get a second opinion.

I tried not to panic when I was told my retina was due to due to detach within 30 days. I duly got my second opinion. The second opinion guy flashed bright lights in my eye, then took a high tech picture, and told me my retina was due to detach within 30 days. This would appear to be confirmation of the first opinion…if not for the fact that the second appointment was five days later. Why didn’t Mr. Second Opinion say, 25 days? But did I ask this question? No way! I am not a smart ass…with my doctors. Meanwhile, I panicked. I ordered audiobooks.  I abanodoned a seven hour solo road trip, too afraid of what might happen if my retina chose that tiny window of time to detach, stranding me far from a specialist.

Well, it’s thirty days since the first appointment. My retina is still with me. My first opinion doctor tells me that the chances of my retina detaching have now fallen down to 10%, since it hasn’t detached already. This is brilliant news. I am going to celebrate by running out and buying a hard copy of Americanah by Chimamanda Ngozi Adichie, which sounds fantastic as an audiobook, don’t get me wrong, but I adore this novel enough to want to absorb it the old-fashioned way, mediated through my fickle eyes.



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In Favor of Anansi Tales

Works reviewed:
The Anansi Boys by Neil Gaiman
The Black Banners: The Inside Story of 9/11 and the War Against al-Qaeda by Ali Soufan
Mission Impossible 4 by Brad Bird

I find it impossible to review Neil Gaiman’s The Anansi Boys without mentioning other books and stories I’ve read or heard lately. I blame Anansi, the god of stories, for my inability to examine this one story without seeing its connection to others. We are all bound up in the same great narrative web.
Anansi is the progenitor of the eponymous heroes of Gaiman’s gleeful tale. His two sons, The Anansi Boys, appear at first to be total opposites: Fat Charlie lives a humdrum life, whereas his brother Spider is the life of the party. Yet when Spider drops into town, he is able to effortlessly assume his staid and serious brother’s identity, exposing Fat Charlie’s corrupt boss and seducing Fat Charlie’s chaste fiancée in the process. Is Spider abusing some divine power to impersonate Fat Charlie? Or are Fat Charlie and Spider not as different as they’d like to think? Could it be that Fat Charlie has been squandering divine powers of his own?
For a while it looks like it’s going to take a miracle for Fat Charlie to forgive his brother for shaking up his life. Not to worry, these boys can work miracles. Don’t forget, their father is Anansi, the god of stories. A well-earned miracle arises in every Anansi story.
In the course of this engaging novel, Gaiman goes back—all the way back—to the dawn of stories. In the beginning, he tells us, Tiger owned the stories. Tiger stories reflected the lives of the earliest storytellers—they were nasty, brutish and short. All Tiger stories began in blood, and ended in tears. And then an insurrection took place. Anansi the Spider outwitted Tiger, and took ownership of all the stories. Stories no longer served as rote recitations of violent acts. Stories became as subversive as the clever god Anansi, reflecting a revolution against Tiger’s view of Might as Right. The world became a more nuanced, more civilized, and altogether more enjoyable place, a place where stories flourish.
I had the good luck to hear the delightful audio book version of The Anansi Boys on a recent family road trip. Once we reached our destination, I returned to reading Ali Soufan’s a gripping nonfiction work, The Black Banners: The Inside Story of 9/11 and the War Against al-Qaeda. Oddly enough, as I read this urgent firsthand account of high stakes interrogations, I couldn’t help but see the conflict between Anansi and Tiger playing out between two very different styles of intelligence gathering. Ali Soufan systematically displays his successes as the leading Arabic speaking FBI interrogator. He used Anansi-like tactics of outsmarting his interlocutors, who were invariably prepared for Tiger-like torture, and not theological debates on the finer points of interpretation of the Koran. Soufan drew the terror suspects out, discovering their hopes, and also their weaknesses, ultimately tricking them into thinking he already knews everything about them, so there was no point in lying. Defeated, they revealed all.
Sadly, after 9/11, American foreign policy grew more fearful, and less rational. Enter the Tiger. “Enhanced interrogation,” the fancy term for torture, became the order of the day. Sufan continued to elicit actionable intelligence over tiny gifts such as a phone call home, or a plate of diabetic cookies, while the CIA learned nothing whatsoever after hours of water boarding and humiliation. Worse, the CIA took credit for Soufan’s discoveries, using his intel as justification for the continuation of their futile, ultimately un-American, coercive interrogation policies. Sufan’s account stands as a much-needed corrective to well-publicized falsehoods he was powerless, for many years, to contradict. His manuscript preserves the CIA’s redactions, which do pathetically little to prevent the truth from shining through.
I wish I could definitively say that the Tiger techniques are a thing of the past, and that the Obama administration put a stop to enhanced interrogation. Unfortunately, this book remains necessary and relevant. The Black Banners is a must-read for every informed citizen. Not enough decision makers and culture shapers have a realistic understanding of effective intelligence gathering. Since finishing The Black Banners, I’ve seen multiple examples of our pop culture perpetuating misconceptions of torture as an effective means of eliciting accurate information, most recently in an unconvincing scene in Brad Bird’s megahit, Mission Impossible 4. I’d like to send Brad Bird a copy of the Black Banners. Ali Soufan is a true American hero, as overlooked and under-credited as Bird’s fictional heroes from his earlier masterpiece, The Incredibles. The fate of our world may indeed depend on how we tell our stories; a movie version of The Black Banners might be just the way to start.


Do you know where your medication has been?

Dangerous Doses
A True Story of Cops, Counterfeiters, and the Contamination of America’s Drug Supply

By Katherine Eban

1. True or False: “Pharmaceutical middlemen…buy, sell, sort, repackage and distribute 98% of the nation’s medicine.”

2. Which of the following characters have been granted a license to trade as a secondary pharmaceutical wholesaler:
A. “A convicted heroin seller who had spent years in the Florida prison system”
B. A woman who “pleaded guilty in 2000 to selling stolen medicine through her husband’s wholesale company (and) was still on probation.”
C. “A fellow on federal probation after serving time for marijuana smuggling.”
D. “The eighth grade dropout and heroin addict”
E. Small (big dollar) businessmen that feel threatened with extinction
F. All of the above

3. What methods have been recorded as having been used by secondary wholesalers to buy low and sell high:
A. Parking lot resale. Cancer and AIDS drugs purchased directly from professional patients who sold, rather than took, their medicine.
B. Theft from competitor’s warehouses
C. Theft from hospitals
D. Drug dilution and repackaging
E. The “Puerto Rican” turn, a.k.a. the U-boat diversion, in which wholesalers take advantage of large discounts to overseas buyers, including those in Puerto Rico, by establishing companies in Puerto Rico to buy drugs at a discount. Cargo planes turn around mid-flight and resell drugs to states for a far higher price.
F. All of the above

4. True or False: Kevin Fagan, the father of a teenager poisoned by a counterfeit medication, touched the heart of Laura Bush with this personal letter:
“Today, society is suffering from a moral breakdown where huge companies look only to the bottom line and not to what is the right thing to do…I ask that you, a parent as I, do whatever you can to bring forward legislation to require drug companies to document the shipping locations of prescription drugs from the point of origin to the end user…the general public.”

5. True or False: When Governor Jeb Bush was apprised of the situation, he signed the 1993 Prescription Drug Act. He told investigators (and heroes of this book), “You guys scared the hell out of me.”

6. To research this book, Katherine Eban
a. Conducted over 160 significant interviews with people involved in the problem of contaminated medicine in America.
b. Submitted sixteen Freedom of Information Requests to the Food and Drug Administration, the Florida health department, the Florida Department of Law Enforcement, and other state pharmacy boards
c. Obtained over 13,000 pages of documents
d. All of the above

7. Dangerous Doses
a. Is a fast paced account of the slow pace of the law
b. Is more rigorously documented than the trail of a prescription drug
c. Is the scariest book I’ve ever read
d. All of the above

Answers: 1. True (89) 2. F (72, 140, 82, 340, 183) 3. F. (95,99) 4. False (160) 5. True (266) 6. D 7. D

The Illumination

The Illumination
By Kevin Brockmeier

Every day, I am in pain. Every day, I read. Coincidence? Maybe not. I have multiple sclerosis to blame for my quotidian pain. But today I suffer from a form of pain that can’t be attributed to chronic illness, but rather, to chronic habit. I’ve got a crick in my neck. I blame the brilliant author Kevin Brockmeier. His novel, The Illumination, near immobilized me. It’s not the kind of book you walk away from (assuming you can walk.)
The premise of the novel is deceptively simple. One afternoon, there is a random change in the universe. Pain takes on a new property. Pain emits light.
To give an example: if I were a character in the world of The Illumination, there would be a white light emanating out the back of my neck, shimmering from the cervical through the thoracic regions of my spine. My tingly calves would glow with neurologic noise. It is entirely possible that my hair would be adorned with bright pinpricks, like the ones I see on MRIs of my lesion riddled brain. As my pain increases with the passing hours, so would the wattage. By nightfall, I’d be a beacon. It would be impossible to fall asleep or stay asleep beside me, as I am also an insomniac. No doubt I would be confined to a rocky outcrop on the coast of Maine, where I would be propped up facing the ocean. I would accept my fate as a living lighthouse, and wear a long white t-shirt dress with one thick red horizontal stripe.
Or maybe not. The actual characters in the Illumination are more interesting than that. They don’t come off as metaphors, but as ordinary people, doing the extraordinary job of expanding the narrative while simultaneously moving it closer to the goal. The personal, the religious, the literary, and the cosmic ramifications of The Illumination are explored from multiple points of view, all equally compelling. That’s quite a trick.
This playful narrative opens with a character that blames her pain on her ex-husband, in much the same way as I blame the crick in my neck on Kevin Brockmeier. It’s not Kevin Brockmeier’s fault that I got a crick in my neck trying to unwrap the many layers of meaning in his book, any more than it’s the ex-husband’s fault that his wife nipped off the tip of her thumb while trying to cut through a package he’d wrapped in “a thick layer of transparent tape, the kind fretted with hundreds of white threads, the latest in his long campaign of bring needless difficulty to her life.”
Brockmeier’s novel is fretted with perhaps hundreds of narrative threads, none of them needless, each a delight. I would love to dissect every chapter in this post; but I will leave the pleasure of discovery to you. It’s the first novel I’ve read that managed to coerce me into literally reading through another point of view. Get ready for the shock of recognition once you realize that this is not an ordinary novel, but an elaborate game. Move over, Nabokov.

The Keys to Heaven and Hell

The mind is its own place,
and in itself
Can make a Heaven of Hell
a Hell of Heaven
-John Milton

Nearly two years ago to this day, I met two unforgettable working women on the Big Island of Hawaii.
Readers, tuck away your image of nubile brown women gyrating in grass skirts. The two women I’m about to describe were both, by my estimation, well over fifty—although there is a strong possibility that one of these women was much older than she looked, and the other, much younger. In any case, it is highly unlikely either woman would remember Ms. Lab Rat, or would have found our quotidian interactions at all remarkable. Yet in that day, just by going about their usual business in their usual ways, these two women inadvertently handed me nothing less than the Key to Heaven and the Key to Hell.
I met the woman with the Key to Heaven in a place you don’t find listed in any glossy Big Island travel guide. A place that has never been rated by Zagat. A place undocumented by Lonely Planet. My husband is in-the-know about quite a few noteworthy spots on the Big Island of Hawaii, as this island is his mother’s birthplace. He listed this particular location above all the other hot spots we planned to visit that day: above Onekahakaha Beach, which is totally a beach for locals, above Volcano National Park, which is totally a top-ten contender for any sane person’s bucket list. Be that as it may, this list I’m referring to was not my husband’s bucket list. It was his to-do list. You see, we happened to be staying in a plantation cottage so rural, so isolated, that there was no municipal garage pickup.
Yes, we found the woman with the Key to Heaven working at the local garbage transfer station.
I was as mystified as you are.
At first glance, the woman working at the transfer station looked completely ordinary. It wasn’t as if she wore a fragrant lei and a grass skirt. No, her outfit was more along the lines of a drab polo shirt tucked into pressed khakis. Yet this woman was utterly dazzling. She radiated well-being as she stepped out to greet us with what felt like the warmest word on the planet.
As she greeted us with Aloha, she was smiling uncontrollably, just beaming with joy, as though she had been waiting to meet our little family her entire life, and she could imagine no better place on the entire planet for this transformative event to take place than on this very spot. The garbage transfer station.
Her joy was utterly contagious. I couldn’t believe how happy I was to meet her. How happy I was to be there, at the transfer station, with my husband and son, where we could complete our meaningful task of getting rid of garbage. And to think we’d assumed this task was merely something we had to perform to go on to our real destinations.
“Aloha,” we responded. And it felt like we were returning, not so much a greeting, as a blessing.
Raise your hand if you think you know the meaning of the word, Aloha. I would have raised my hand, too, even back in the day when I thought all Hawaiian women traipsed around in grass skirts. Like most Mainlanders of my generation, I considered myself an expert on Hawaiian culture after I’d watched a portion of the three-part Brady Bunch Hawaiian Adventure. Ah, well. I didn’t know what I didn’t know. I’ll say this much—don’t look to little old freckled me, a haole, a white person, to define Aloha.
Instead, allow me to consult a genuine expert, good old Aunty D.
Aunty D’s Hawaiian Language Workshop cites the dictionary definition of Aloha as follows:

Greetings! Hello! Good-by! 

That dictionary definition is probably not too far off from my old Brady Bunch-inspired definition.
But buckle up. Aunty D and I are going to get all mystical on you. Aunty D digs a little deeper into the etymology of the word Aloha, to reveal that “alo” means presence, and “ha” means “Divine Breath.”
Now, what does the phrase, “Divine Breath” evoke for you? If you are of European origin, like me, that phrase may seem bizarre at first hearing. We white people do not, as a rule, associate the breath with the Divine. Breath can be bad. Breath can be good. (And then only when camouflaged by mouthwash and/or toothpaste.) But Divine? Get out of town.

According to Aunty D., Aloha is

…the spirit of God in Man. As life’s essence, Aloha is everywhere. It is the magnificence in every person, as well as in the `âina, i.e., the environs which is the air, the land, the sky, and the sea…

Does this deeper meaning of Aloha remind you of any single word in English?
Me neither.
Where I was growing up, The Divine was never mentioned in the same breath as breath. The official word was that God resided in churches, in flat tasteless communion wafers, (and then only through the specialized mediation of a priest.) God was not in Man (or woman), and was certainly not in the air, the land, the sky, or the sea.
Then again, I didn’t grow up in Hawaii.
Luckily for me, I was raised by parents who hauled us kids off to the woods to check in with God at least as often as they hauled us off to church. My mother would remind my sisters and I, “Your body is the temple of the Lord.”
Aloha, Mom.
I would not encounter a word even remotely similar to Aloha until I was an adult confronted with a diagnosis of multiple sclerosis, and I thought maybe the lifestyle I’d been living wasn’t working too well for me. I got myself to a yoga studio. The first word I learned there was a greeting in Sanskrit.
Namaste means, roughly, the divine in me recognizes the divine in you. That’s not so different from Aloha. I must say, either greeting is far superior to, “May I take your order?”
When the lady at the dump greeted us with, “Aloha” that morning, I not only heard the word, I felt it, too. I felt the spirit of the Divine in this magnificent woman. I immediately understood her source of contentment. It was within us, and all around us, right there in the transfer station. I saw that she wanted for nothing; she had a job, a useful job, in a beautiful place. Her status in life was irrelevant. Her job description might not impress anyone, but that was irrelevant, also, because she was clearly in no need of external validation.
In retrospect, I don’t think I was viewing the transfer station agent’s situation through a vacationer’s rose-colored glasses. I think she was simply so magnificently present that she blew away all the labels and judgments that habitually taint my perceptions. I tell you, it was a relief to take a moment to lay down this burden. I could clearly see the Divine in this woman, the Divine in her workplace. Sure, it didn’t hurt that the sun was shining, and that the sky was blue, but I might not have noticed the warmth of the sun, or the color of the sky, had I been wearing my habitual blinders.
I thought a lot about that moment when I started reading a book by Eckhart Tolle. What a Hawaiian might call the power of Aloha is what Tolle calls “The Power of Now.” He observes, “identification with your mind creates an opaque screen of concepts, labels, images, words, judgments, and definitions that blocks all true relationship. It comes between you and yourself, between you and your fellow man and woman, between you and nature, between you and God. It is this screen of thought that creates the illusion of separateness, the illusion that there is you and a totally separate “other.” You then forget the essential fact that, underneath the level of physical appearances and separate forms, you are one with all that is.”
In The Power of Now, Tolle implores us to, “Break the old pattern of preset-moment denial and present-moment resistance. Make it your practice to withdraw attention from past and future whenever they are not needed.”
I found myself in no rush to leave the transfer station, in no hurry to reach the many distant points on our list. That shift in consciousness proved useful. As it happened, the next destination on my husband’s list was clear across the Island, on the rainy side, and the speed limits on the one road available varied from 45 mph to 25mph. The posted changes were frequent, and seemingly random. A recipe for aggravation? Only if you weren’t driving in the Now. The view out the window was lush and verdant; life in spectacular display. That road dared you to care to be anywhere but where you were. It was a darn uppity road.
As there is no photograph of the Transfer Station, the place where we found the woman with the key to Heaven, I will supply no photograph of the restaurant where we encountered the woman with the Key to Hell.
The woman with the Key to Hell may have dressed better the woman with the Key to Heaven. But my heart didn’t leap at the sight of her. Surely, she held a more prestigious position, at a far more prestigious place. Or so you would think, if you were unaware that every place is sacred.
The hostess took her time acknowledging our presence. She fluffed a few papers on the lectern before her. Looked to the right of us, and to the left of us, without appearing to have spotted us, although we were the only people standing in the entrance.
When she ran out of ways to avoid looking at us,
it was clear that she saw three dirty people who had sloshed through ocean water, and over lava rocks. She surely didn’t see three expressions of the Divine. It is true we three were not at all attired for dinner at, say, The Four Seasons. But this restaurant was not The Four Seasons. This restaurant was located at the top of a volcano on an island where acceptable nightlife footwear is a pair of zoris, or flip-flops. Not that you’d ever see a local eating there. No, this restaurant’s clientele consisted entirely of the marooned—those of us dressing out of suitcases and backpacks. Our little family had eaten there many a time in the past, dressed as casually, or worse.
Having run out of alternatives, the restaurant hostess finally deigned to greet us. She did so mechanically, using the same word as the transfer station agent, but without so much as a fake smile on her face.
Here’s what Hawaii’s last ruler, Queen Lili’uokalani, had to say on the subject of Aloha:

More than a greeting, it is a blessing. To be ONLY used with sincerity: “‘Aloha’ could not be thoughtlessly or indiscriminately spoken, for it carried its own power. No Hawaiian could greet another with ‘Aloha’ unless he felt it in his own heart. If he felt anger or hate in his heart, he had to cleanse himself before he said ‘Aloha’.”
Did our hostess have anger or hate in her heart? I doubt her feeling was as vehement as that. She went to extreme pains to continue to treat us as if we were invisible by asking, “How many of you are there?” As though it wasn’t plain to see.
My husband helpfully suggested, “Three.”
She pursed her lips. “I’ll check and see if there’s room.” Without another word, she turned her back on us and disappeared inside the restaurant. She was gone long enough for us to start discussing a Plan B. As our hostess was insinuating, this was indeed the best restaurant for miles. But that was only because it was the only restaurant for miles.
My husband and I had just agreed to start back for the cottage when our hostess returned. She sighed, exasperated. “I can squeeze you in.”
We followed our hostess inside the serving area, a vast room with all but two tables empty. Just as our hostess had found us invisible, we found her crowd of patrons invisible. Clearly, she’d manufactured the seating problem.
Tolle asks, “Why make anything into a problem? Isn’t life challenging enough as it is? The mind unconsciously loves problems because they give you an identity of sorts. This is normal, and it is insane.”
Later, he reflects, “The pain that you create now is always some form of nonacceptance, some form of unconscious resistance to what is. On the level of thought, the resistance is some form of judgment.”
Indeed, I feel a little guilty singling out this one hostess. She is not the exception. Her behavior is almost the rule. Some people, some very insecure people, actually prefer to eat out in an establishment that snubs them. Think of the Groucho Marx joke, “I don’t want to belong to any club that will accept me as a member.”
I’d like to think there was more going in that restaurant than I was aware of. Perhaps the hostess was doing a remarkable job remaining calm, as the cook had just keeled over and died in the kitchen. Indeed, that explanation would also explain the quality of the food we would be served.
Oh, gentle reader, in my judgments, I carry the Key to the Hell, and in my observations, the Key to Heaven. I can almost hear those keys jingling, day in and day out, with every sentence that I write. I didn’t need to travel to find two women to illustrate the options. I can look no further than myself.
Similarly, I can assure you, Gentle Reader, that you don’t need to go to Hawaii to experience Aloha, or to India to encounter Namaste. Eckhart Tolle would advise you to tear up your bucket list, and stay right where you are. And while you are there, you could do worse than reading his simple book, The Power of Now. It won’t change your life. It will change how you live it.
Thanks for reading!
For more about the joy available to all, watch this talk by Srikumar Rao.

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Ms. Lab Rat in trueFoolishness

I have been aided in the transition from writing to live storytelling by true professionals. I am thankful to Jeff Groh and Dave Levy for pushing me to succeed, and to my fellow performers, for demonstrating how to rock the house. We laughed, we cried, we clapped, we SANG.

There was an accordionist! A jug band! Yep. Good times.

Don’t take my word for it. Read this review!

You won’t want to miss the next show, themed trueIndepence:



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