Author: mslabrat

Still Standing

mslabrat's avatarMs Lab Rat

Sixteen years ago, I coerced my husband into doing something crazy. I had just come back from a doctor’s appointment that hadn’t gone at all well.
When I arrived at our shack, I was crying like a baby. I mean this quite literally. I was crying so hard, I could not form a word.
We both found my speechless sobs distressing. My sweet husband’s dark eyes were widening with horror.
Just a few months earlier, his mother had been diagnosed with terminal cancer. He’d already learned about the flipside of love.
My husband loved me. I now knew he was going to lose me, was losing me already, one little brain lesion, one little spinal cord lesion, at a time.
Until that day, I hadn’t heard of multiple sclerosis. I didn’t know for certain if an MS diagnosis was better than a terminal cancer diagnosis, or far, far worse.
I…

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Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

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Finally…FDA Approves Zinbryta

IMG_4206I just read that the experimental drug I’ve been taking for ten years has finally been approved by the FDA and will be available as Zinbryta. This must mean Ms. Lab Rat is officially retired. After many years of commuting to the National Institutes of Health (NIH) to take the only drug that’s stopped the progress of my multiple sclerosis (MS), I am now going to have to buy the drug like everybody else.

You know what? I’m thrilled. I’ve hated having to hear heartbreaking story after heartbreaking story of yet another person getting an MS diagnosis, getting an ineffectual, often expensive treatment, getting worse. They look at me, and I appear fine. I’m not, but I’m also not getting worse. My medication has worked. But for these past ten years, so many others with this disease have had no chance of seeing if this medication would work for them. My dear friend Debra died way too young still waiting for this day. As you can imagine, I’ve been on the phone a lot this afternoon, updating every person who has asked me about Zinbryta. This blog post is for those of you whose numbers aren’t in my contact list.

Until I let the world know the risk I took with this drug was worth it, I won’t feel that my tenure as a Lab Rat is well and truly over. But I guess an era has come to an end.

No more free flights to Washington DC for free MRI’s. No more free top level medical care. No more cognitive tests. (Hooray!) No more free monthly blood tests to check my liver function. (My liver is just fine, thank you.) No more nights on-site at the swank Safra Lodge. No more free stays at Bethesda Court Hotel. No more side trips to the awesome DC museums and zoo. No more viewings of indie films at Bethesda Row Cinema. No more delicious dinners at Bethesda’s many fine restaurants.

Do you get the idea that being in a clinical trial at the NIH has been a pretty sweet deal? It has been for me. But what I’ll miss the most will be the people: the brilliant doctors, nurses, and interns of the NIH. Why, even the taxi drivers usually had pretty fascinating back-stories to share, if given half a chance.

The one thing I regret about my participation in the trial is that I waited until the end to reach out to other guests at the NIH; like the older lady I met in the shuttle van who’d lost both breasts and lymph nodes to ineffectual and painful cancer treatments. The cancer had spread and spread for years until she was accepted for an NIH trial (“I couldn’t believe it, at my age.”) Now her NIH doctor extracts some of her immune cells, expands the cell population in the lab, and treats the cancer with it. Her cancer? Gone. The side effects? None. She’s one happy lady. The NIH complex is full of motivated people pursuing second chances, and I wish I hadn’t been too timid and/or respectful of their privacy to chat with them. (If anyone reading this is an NIH lab rat, consider this your invitation to introduce yourself.)

I’d meant for this blog post to be about Zinbryta, but I guess it’s just a big thank you note to the NIH.

Zinbryta has been safe and effective for me for years now, and I’m terribly eager to let people know that there is one more—I think far better—alternative out there to try. But if Zinbryta doesn’t work for you, do not despair. There are plenty of other MS drugs in the research pipeline. Maybe one day you’ll wind up as a Lab Rat, too. Clinical trials are not all MRI’s and blood work. They are also an investment for the future of others coping with disease. Who knows…maybe one of us will one day be a Lab Rat for the drug that winds up becoming the cure. I won’t stop hoping.

 

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Six Months

Note from the Rat: Reading over this 2012 blog post from my vantage point in 2016, I am so grateful to the NIH (National Institutes of Health), which has continued to supply me with the MS medication I have depended on to keep my Multiple Sclerosis in remission. This medication, which I refer to as  DAC HYP, will (hopefully) go to market with the name Zinbryta. In these intervening years since I wrote this post, all that was asked of me was that I have my liver functions checked locally every six months, and that I fly down to the NIH every six months to have more extensive testing; more bloodwork, a lumbar puncture, eye exams, typical neurologic exams, MRI’s. The length of time it is taking to get the drug approved has been very frustrating to me, as I know more and more people who have been diagnosed with MS who have no access to the medication that has worked so well for me (one brain lesion in ten years, vs many tens of lesions in the ten years previous.) My very dearest friend with MS, Debra C.,  died while waiting for access to this drug. The only comfort I can take from this long wait is that I, and the privileged few on the safety arm of this study, have accumulated more living proof that one can take this drug for years and years and years with no major side effects.  So here it is, my blog post from 2012:

 

I’ve got 6 months left on the NIH (National Institutes of Health) trial of DAC HYP. After that, I might not get further access to the drug that has kept the progress of my multiple sclerosis (MS) in check for the past 6 years.
I didn’t panic when I was told the money just wasn’t there to keep the trial participants on the drug. I probably should have. As my sister reminded me, “You think you’re doing OK, but that’s not you doing OK, that’s you on the drug.”
She’s right.
I know, because I get monthly reminders of me-off-the-drug. I can only inject DAC HYP once a month, but the effect usually seems to last only three weeks: the week preceding a fresh injection is a drag. Literally. I pretty much just drag my body around, propping it up until my next dose of DAC HYP, when the “real me” can take over again.
What will I do when there is no next injection?
I may be left dragging around a husk of myself until such time as the FDA approves the commercial release of DAC HYP. That process may take as long as two years.
How much damage can multiple sclerosis do in two years?
I can’t afford to find out. My central nervous system has undergone punishing damage already, from the many years I was on no drugs, followed by the many years I was on bad drugs.
Everyone I tell about the upcoming DAC HYP discontinuation has urged me to take another drug in its place. If I had thought there was a more effective drug out there, I wouldn’t be taking a trial drug, would I?
I’ve had plenty of disappointments with other MS drugs.
Some new ones have come out since I started my trial, and maybe those drugs will prove effective. Or maybe they’ll prove lethal. People have died on MS drugs. At times, my MS symptoms have been bad enough to make me indifferent to such a risk. The “real me”, the one on DAC HYP, doesn’t feel that desperate. We’ll see what happens when access to the “real me” runs out.
Somehow I’ve never envisioned a life after DAC HYP that would include sampling yet another MS medication. I’ve been hoping, I still hope, that I would live to switch out DAC HYP for the actual cure.
You see, I don’t want to medicate my MS. I want to vanquish it.
I’m not the only one. There is talk of an MS “cure.” It’s somewhat hyperbolic, but it’s also compelling. Dr. Wahls, a neurologist in Iowa City, used to suffer from a particularly aggressive form of MS that was rapidly debilitating and drove her into a reclining wheelchair. She fought back by eating every “brain food” she could think of, and by exercising as much as was physically possible. I wouldn’t say she is “cured” now, because I bet her lesions didn’t disappear, but she is certainly doing very well. She can stand for the duration of a TED talk. She is also biking to work, she is practicing medicine full-time, and she is starting a clinical trial to examine the effect of diet on MS. It could be, as she claims, that she has reversed a case of progressive multiple sclerosis. I hope so. Or it could be that she’s on the remitting cycle in a mislabeled case of relapsing remitting MS. I’ve ridden on the high of those cycles, myself, exercising like a fiend on my borrowed time. I’m sorry to say those times don’t last. I wish her the best. Especially since, in six months, the Wahls diet may turn out to be the best option I’ll have left.
But why wait six months?
I’ve been eating aggressively healthy brain food ever since I first heard of the Wahls diet, but now I will start eating healthier still. (This prospect terrifies my husband, who claims I already eat healthier than anyone he knows)
I am perfectly willing to trade DAC HYP for eight daily platefuls of kale, if that would help me. I am perfectly willing to lift weights, swim laps, and practice yoga with twice the intensity of my normal schedule. Indeed, how could it hurt? I can foresee only one downside to this course of action. I know I am perfectly capable of blaming myself for not trying hard enough if—or let’s face it, when—the disease strikes again.
Would blaming myself be so healthy? I don’t think so.
A number of good people have approached me to ask what I “do” to remain so healthy with MS. I say I exercise, I say I eat well, I say I do yoga. They tell me I have a “good attitude.” They tell me others, those sicker with MS, do not. That may just be oversimplifying things.
Here’s the deal: I’ve had access to a good drug. Others with MS have not. In six months, I will join their ranks. We’ll see if a mix of a “good attitude”, a good workout routine and good diet will be enough to see me through until DAC HYP goes on the market. I’m sure it’s all very necessary. I can only hope it will be sufficient.

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Dump Him

Mother’s Day, 2012

“If you want to know how a guy is going to treat you down the road, take a look at how he treats his mother. If he’s respectful of his mother, he’ll be respectful toward you. If he’s a jerk to his mother…you’d better dump him. Fast.”

My mother’s guidelines were intended to direct me to a suitable marriage partner. I applied them accordingly, and married a guy who adored his mother. That was twenty years ago. My mother’s advice proved so effective, I thought I’d never have the need for it again.

This summer, I was given a rare opportunity to apply Mom’s precepts to a relationship in an entirely different sphere. The man in question had done some business with my lady-parts, but that did not make him a potential romantic partner. The man in question was my urologist.

When I’d met the urologist in his clinic, I’d been dressed in a johnny coat. He’d been dressed in a suit and tie. His old-world formality, his swarthy complexion and his slicked-back, jet-black hair reminded me of my dear departed Grandpa Blanco. But despite the family resemblance, deep in my heart I didn’t trust the guy. I thought he was a show-off. He seemed more interested in impressing me with the latest gee-whiz treatment than in treating me appropriately.

A relationship with a doctor ought to be strictly professional, not personal, so I put whatever personal reservations I might have about him to the side. Yet a nagging voice inside me wondered if perhaps this man’s showmanship might lead to a less than desireable outcome. I was on the fence about seeing him again, or pursuing his “cutting edge” treatment, in part because I didn’t want to go through the trouble of shopping for a new urologist, and in part because mere intuition didn’t seem like a reliable measurement of a doctor’s professional aptitude.

As fate would have it, my intuition would be proven correct, luckily without the messy consequence of an undesired clinical outcome.

In what would be my last encounter this urologist, I was dressed in street clothes, and he was dressed, as always, in his suit and tie. I was carrying a parcel, a bright silk dress I’d purchased off the $50 rack in the back of the shop, which was nestled in the heart of the self-proclaimed “largest bridal district in North America.”
We both did a bit of a double-take, as sometimes happens when you run across a familiar person in an unfamiliar context. My husband and son arrived at the shop, having finshed their task of getting measured for tuxedos across the street. I introduced them to my “doctor” without spelling out his specialty for all the assembled would-be brides and bridesmaids to hear. And then the explanation for the urologist’s presence in a bridal shop became clear. A little old lady hobbled over to us on the arm of a lovely young college girl. The urologist introduced us to his daughter and his mother, who had just flown in that morning from Iran for a family wedding.
I couldn’t help it—I shared my delight at the bargains on the fifty dollar rack. “You couldn’t buy this much silk for fifty bucks! It’s Dupioni.”
As it turned out, the urologist knew all about the $50 rack. They were only there for the bargains. As nothing on the rack “carryies her size,” the urologist was planning on driving his mom to Goodwill to peruse the dresses there.
Goodwill? I wondered if his shopping plans weren’t a bit labor intensive. Why not pay full price at one of the 250 bridal shops within these scant two blocks? Hadn’t the urologist’s mother already had quite a day, flying all the way out to our fair midwestern city from Iran?
“She’s made of iron. Look at her.”
At this point, our party of two families had moved onto the street. My husband was halfway down the block, in a hurry to get to the car so he could deliver me from this unpleasant awkward encounter here in bridal shop purgatory. My son was halfway between his dad and his mom, tarrying in case I needed an arm. The urologist was keeping up with me, while the urologist’s mother, that stalwart traveler, was shuffling slowly but determinedly past the fifties-era storefronts, unaided by her granddaughter or her son.
At that moment, I made my decision. Dump him. The urologist wouldn’t wait up for his ancient mother, no matter how I tried to slow our pace. The man was too cheap to buy his mother a new dress for a wedding she’d traveled a long way to attend. If he could afford a plane ticket from Iran, he could afford a full priced dress.
My husband pulled up alongside us. My son opened the car door for his mother.
That is how it’s done.
When I waved goodbye to the urologist, I knew it was forever. The next specialist to weigh on the situation was a urogynecologist recommended by my local MS doc. She told me that if I were to continue to follow the advice of that urologist, I would end up in bad shape. Not that I needed a professional opinion to confirm …Mother knows best.

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Labels

One summer night, my husband and I were sitting on a picnic bench outside an ice cream shop in one of the more precious neighborhoods in Cincinnati, as our son and his buddies from Shakespeare Camp clowned around and blew off some post-performance steam. The flavor of the outing was pure vanilla. Let’s just say none of the boys would be a shoe-in for the role of Othello.
My husband said, “I don’t feel white here.”
My husband is white. Half white. He is also half Chinese.
He spent most of his childhood in North Dakota, except for a year in Pakistan. There were no Chinese kids, or other half Chinese kids, in Grand Forks, North Dakota. There were no Chinese kids, or other half Chinese kids, in Lahore, Pakistan. Of the two cities, Lahore was by far the more racially diverse.
In North Dakota, my husband-to-be was regarded as an alien. In Pakistan, he was regarded as an American. It’s hard to guess which must have felt more uncomfortable. Even back in the ‘70’s, Americans were not exactly beloved in Pakistan.
In any case, his identity as an American pretty much evaporated as soon as he returned to the good old US of A.
Chinese Americans can tell at a glance that he’s not Chinese. Just like white Americans can tell at a glance that he’s not white.
There is one state in the union where my husband blends right in. While vacationing in Hawaii, he may be offered a local discount via a top-secret hand gesture and a knowing smile. For an hour or two, he’ll be all puffed up. And then he’ll be offered a fork at a Chinese restaurant. Deflated, he’ll be forced to ask for chopsticks.
When we moved to Cincinnati, I think things got a little easier for him. (I could be dead wrong.) Race in Cincinnati is black and white. Black Cincinnatians and white Cincinnatians can all agree on one thing. My husband isn’t black. Which means, for all intents and purposes, he’s white.
That standard generally holds, unless my husband happens to be surrounded by unfamiliar white people. Then he’s not-white. And the question hovers, usually unspoken, unexpressed, except through second glances.
“What is he?”
On this vanilla flavored outing, my husband and I talked to the other Shakespeare parents about volunteer opportunities at the arts school, about an upcoming pool party at the swim and tennis club. We did not openly mock the affluent white street guitarist playing Bob Marley. Instead, we exchanged whispers and surreptitious snickers.
After our breathless son rejoined us, my husband went off to get the car. He wasn’t just being a gentleman. That particular evening, it wasn’t physically possible for me to get up and join him for the three block walk on a mild summer night.
Once my husband pulled up in front of the ice cream shop in our Element, the gig was up. It was my turn to be the outsider. I stood. My knees buckled. Our son took my arm. My knees buckled again. Once, twice, three times more before fair Hamlet got me to the car.
I, too, have a shifting identity. For me, relapsing/remitting multiple sclerosis (MS) means sometimes I can walk, and sometimes I can’t.
What am I?
I am disabled. I have a placard to prove it.
What am I?
I am healthy. I can swim a lot of laps.
Once—only once—a man yelled at me as I walked or ran, I suppose with undue vigor, away from my placarded car.
“You’re not disabled.”
What does he know?
Usually, when I run from my car, I am running to the bathroom, ‘cause I have an MS bladder, and I’ve really got to pee.
Sometimes, when I see an available handicapped spot, I don’t have to pee. My legs feel just a wee bit tingly. I entertain the notion of parking further back. If there is only one empty handicapped parking space, I may just keep the placard in the glove compartment, and park somewhere less accessible. Which doesn’t always turn out to be such a smart decision. I can’t tell you how many times I have parked politely, and then felt not-so-good on my return. I have had to lean on a full shopping cart as if for dear life, my legs in excruciating pain, as I’ve pushed the cart past two, maybe three, perfectly empty handicapped parking spaces.
So much for that.
My husband doesn’t get to choose when he is perceived as white. I don’t get to choose when I am perceived as disabled.
I look disabled when I’m in my wheelchair.
I look fit when I swim my laps.
If I didn’t swim, if I didn’t persistently lift very minimal weights, I would not be at all toned. I would not be able to blend right in with all those other white parents from Shakespeare Camp, if only for a while.
Oddly enough, my husband still hasn’t gotten over caring what other people think about our parking our car in a handicapped spot. He will often run around the car, and give an ostentatious show of offering me his arm, whether I need it or not. It’s like he’s broadcasting, “See, people, my poor wife is handicapped. That’s the reason why we’re using this spot.”
He clearly feels the pressure of the unasked question.
“What is she? Is she really handicapped?”
Screw that. I’m not dead yet. Don’t put me in box.
And while you’re at, screw, “What is he?”
Race is a construction.
So is disability. All of us have an uneven distribution of abilities. These attributes will wax and wane over time. We might as well relax about affixing any labels. They all peel off eventually.
What am I?
I am.
Who are you to ask?

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.

Saving Face

“God has given you one face, and you make yourselves another.”
William Shakespeare
Act 3, Scene 1 of Hamlet

I knew I was in trouble before I opened up my eyes this morning. I could feel that my eyelids were swollen before I attempted to wrench them apart. A trip to the mirror confirmed what my senses implied. My upper eyelids were elephantine. Worse, there were tender red patches beneath each eye. Worse still, tonight I’m scheduled to sit in front of a hundred or so paying audience members with a spotlight shining on this problematic face. Worst of all…it’s kind of my fault.
I write, “kind of,” because last night, when I applied my makeup, I hadn’t realized the potential for this consequence. I write, “my fault” because my neurologist had given me the opportunity to take an all-expense paid trip to the National Institutes of Health, (NIH) in Bethesda, Maryland, and get my rash seen by a dermatologist there. At the last minute, I’d chickened out, and had the NIH cancel my flight, because on that particular morning, my skin didn’t look so bad, nothing a little concealer couldn’t fix. I couldn’t stand the thought of flying all the way to Bethesda over a couple of little scaly patches that could be covered up with concealer. Believe it or not, I thought I was saving face. I couldn’t stand the possibility of being regarded as a hypochondriac.
Yeah, right. That hypochondriac option has been out for decades. Who did I think I was fooling?
I’m going to have to back up a bit. I’m going to have to be straight with you about a thing or two.
Starting with this: I set up this blog to share my experiences on an experimental medication for multiple sclerosis, DAC HYP. It’s only now that I notice that I’ve underplayed…as in, possibly haven’t mentioned…that I’ve experienced a side effect. That side effect is rash.
You might well ask, why not?
Here’s why not. I’ve got multiple sclerosis (MS) a horrible, and so far, incurable, degenerative neurological disease, and DAC HYP is the only medication I’ve taken—and I’ve taken plenty—that has actually served to stop the disease progression.
That’s pretty significant.
Rash? As side effects go, rash just hasn’t seemed that significant.
To put it into context, a potential side effect for a competing drug, Tysabri, is sudden death. So, yeah—rash. What of it?
I’d rather have a rash I can see than a brain lesion I can’t see. The choice to take the medication, and bear with the side effect, has been a no-brainer, at least for me. For a while there, I thought that anyone who saw things differently must just be more brain damaged than I am.
Two things have happened since I’ve started this blog that have changed the way I view the risk/benefit analysis of taking a drug that stops MS, yet causes rash.
Thing One: after years and years and years on this drug, I finally did get one—and only one—new brain lesion. And still, as far as I can tell, that’s a phenomenally good result if you compare the efficacy of this drug to that of any other MS drug out there. I’ve been told this one lesion had the good grace to show up in a “silent area.” I don’t agree that the damage was silent—I felt pretty horrible for a while there—but in truth, I’m feeling all right now.
Except for—
Thing Two: the rash has gotten worse.
Way worse.
When the rash first showed up—I believe that happened around the time the medication changed its formulation—it appeared on the inside of my hand; a nice, innocuous spot. No one was too likely to see it. And that was important to me. Some people call MS an invisible disease. I like it’s invisibility, thank you very much. MS only stays invisible if it isn’t allowed to progress.
The rash itched. I applied hydrocortisone. It went away. And then the rash reappeared, on my face of all places. A place everyone was likely to see. And that made the rash something I had to…um…face.
I managed to not face it.
I had a solution. I used a cosmetic. A simple concealer. Perhaps if I were a man, and not in the habit of putting on makeup, that move would have felt like a big deal. But I am a woman. Most of us women are all too familiar with, shall we say, putting our best face forward. (See: Hamlet.)
So yes. I wore concealer over my rash every day. Even on those days the NIH flew me out to examine me, to, you know, see if I was experiencing any side effects on DAC HYP.
Maybe we’ve been at cross-purposes. Whenever I visit the NIH, I always strive to be mistaken for a doctor instead of taken for a patient. My most treasured moments in Bethesda are the times I (almost) get away with this, like when a driver for the NIH picked me up from the hotel and asked, “Are you a patient, or…”
I treasured that “or.” I gave that driver a big tip.
The NIH culture supports these seemingly innocuous mistakes of identity. A nurse once berated herself after she’d asked me a question about my condition in an elevator. “I shouldn’t have done that. I’m not supposed to address you as a patient in front of other people.”
I’m not to be treated like a patient. I’m to be treated like a peer. One never gets too personal with one’s peers. I’ve had one neurologist actually apologize several times during an examination, for having to touch me, for asking me to disrobe. I understood she was expressing her respect for me. But that sentiment can go too far, and actually disrupt the messy process of getting down to the ugly truth.
And it’s hard to get there. For instance, you’ve been reading paragraph after paragraph about my rash, and I still haven’t mentioned I also have scaly dry patches on the inner folds of my arms and my legs. These patches itch. But I tend to forget to mention them, not only to you, but to my neurologist. Why? Because these itchy patches are not visible to others, at least not in the winter months. I can bear almost any amount of discomfort. I just can’t bear exposure.
Which brings me to the prospect of going onstage with a rash in front of about 100 people.
I’d had other plans for this evening’s appearance. I’d planned to get a professional make-up job. I’d planned to get an elaborate up-do. I’d planned to look fabulous, like I did on opening night, just a few hours after I made that cancellation.
Life doesn’t always go as planned
When I’d cancelled my flight to the NIH and my appointment with the NIH dermatologist, my neurologist had suggested I quit wearing make-up. After opening night, I complied. As of last night, my face was repaired, just in time, I thought, for me to take the stage again. Thinking the problem was over, I’d applied a little makeup before going to a concert. We know how that turned out.
This morning, I cancelled my make-up session. I didn’t want to make my elephant face any worse. I did not cancel my up-do.
And then I went to yoga. I’m so glad that I did.
Our teacher, Sharon, shared a passage from a book in which yoga instructor Sianna Sherman answers the question, What’s the best advice you’ve ever gotten?
Sianna answers, “Inner body bright,” a phrase she’d picked up from her teacher, John Friend. Sianna explains that this phrase is “his way of saying ‘It doesn’t matter what’s happening on the outside. No matter how fierce and intense and up against ourselves we feel, if we tap into that place—the place that yoga guides and invites each one of us to—we’ll find that our essence is bright and that our inner freedom is fully present.’ Often, it’s our outer freedom that’s compromised by own mind. We say: ‘Oh I’m not free’ or “I’m a victim, I’m not empowered. Or, ‘This happened to me…’ And then we start to close down. And that’s easy to do, but if we go inside and wait a minute, there’s this inner freedom that’s never compromised; there’s this inner light that’s always true. So you say to yourself, ‘Inner body bright, let me melt the outer body, melt all the crazy stuff that’s happening into the fire of my heart, into that inner light, and then I’m going to stand tall in this light and keep going, no matter what.”
As it happened, that message was exactly what I needed to hear to muster the courage to get onstage with a rash, and without the makeup. When I sit in the spotlight, I somehow doubt I’ll be whispering to myself, “inner body bright.” But I did get the message there’s more to me than meets the eye.
I have lived a long time. I have sported many appearances. I have been a cute little girl, a wince worthy adolescent. I’ve been a woman in a wheelchair. Last week, just before my opening night performance, when I was the lady with the fabulous updo, the owner of an upscale restaurant rushed up to my beautiful family, and asked, “Where do you come from?” in awestruck tones, as though he expected us to answer, “We have descended from Mount Olympus.” That night, it didn’t feel like a challenge to take the stage.
Tonight I’ll have to give the audience some credit. I’ve cancelled my up-do. I won’t apply concealer. I’ll see if I can summon up enough inner beauty to outshine the rash. (The swollen eyelids had calmed back down.) I am, after all, performing for trueTheatre. The audience expects me to be vulnerable. What better occassion to take that risk?

Rerun: The Cold Keeps the Riff Raff Out

I probably should not admit this; under certain circumstances, I do give up. I give up on big things. Things I love. Things that define me to myself. A few months ago, I gave up on swimming at the YMCA.

Swimming is one of the few cardio-vascular exercises still open to me; as I explained in an earlier entry, I have to avoid raising my body temperature. Any time I get too hot, my multiple sclerosis symptoms rear their ugly heads. It gets kind of tricky to keep fit while also keeping cool. Exercise isn’t about keeping cool; exercise is about burning calories. “Feel the burn;” that’s the mantra. Problem is, when I feel the burn, it means I’m about to go down.

I’ve found all sorts of ways to work around this hitch. I can use the weight machines at the gym; I simply lift the lightest increments. I walk over to the water fountain after each machine, and take a drink to avoid overheating. Then I go on to the next machine; perform my repetitions. Rinse. Repeat. My system works. I do get toned. I don’t get overheated. There is just one flaw. I do get bored.

I am not about getting bored. I am all about joy. Did I say exercise is about burning calories? That’s a boring way to look at it. Exercise, at its best, is about celebrating the body, at its best. Exercise is an act of joy.

For me, the most joyous form of exercise is swimming. My husband calls me a mermaid, because even on those days when I cannot walk, when I cannot put one foot in front of the other, I can still swim. Being in the water levels the playing field. The water exempts me from negotiating my balance. It exempts me from gravity. I know why the dolphin grins.

After all this waxing rhapsodic over swimming, you would think that nothing would stand in the way of me and a swimming pool. Let me introduce you to the women of the YMCA locker room. Gentlemen, avert your eyes.

My first impediment was an aging Southern Belle, who introduced herself by stating, “You’re not from around here, are you.” She asked me for my name, and my birthplace. I told her I was born in the Bronx.

The Southern Belle stiffened. I added, I thought helpfully, “Bronx, New York.”

“Oh, I guess that’s all right.”

A few visits later, The Southern Belle grilled me again about my birthplace. The first time she’d asked, she’d been poolside, looming over me as I backstroked. The second time, I had just stepped out of the shower in the locker room. The Southern Belle apparently felt very comfortable in the locker room. As she was asking me about my birthplace, she was languidly applying her hairdryer to her billowy private parts. Startled, I averted my eyes. I towel dried and dressed as quickly as possible. The hairdryer droned on. I could not help but notice as I passed The Southern Belle on my way out that she was still aiming her hairdryer where the wind should not blow. I checked the clock on the wall. Eleven thirty.

Let me tell you something about the daytime YMCA regulars. They are creatures of habit. I am not, and can never be, a creature of habit. I am not, and can never be, a “regular.” I am a creature with brain shrinkage. I could not be tethered to a schedule, even if I wanted one. When I plan, MS laughs.

This YMCA regular was getting in my way. I figured she couldn’t possibly linger at the YMCA all day. The Southern Belle had to eat. By the looks of her, The Southern Belle had to eat quite a lot. She would likely take a break for lunch. I would no longer go to the Y in the morning. I would go instead at noon.

This plan was brilliant. I encountered The Southern Belle on her way out. We were both fully dressed. She may not have recognized me; she didn’t ask me where I was born. I changed and showered unmolested by her questions; and arrived at the pool—with all the other lunchtime swimmers.

I waited for a free lane. One swimmer was gracious enough to offer to share his lane. I accepted.

I like to lose myself when I swim; I’m pretty sure I’m not unique in that regard. I knew what he was giving up. I tried my best to be a good neighbor; to keep to one side, to keep a pool length between us. All that neighborliness was exhausting. The man was a shark. He never stopped moving. I often outlast fast swimmers. I figured, if I just held out, I’d eventually have the lane to myself. Then I noticed the waiting swimmers still poolside. Not a chance.

Maybe going to the YMCA at noon was not such a brilliant idea, after all. I remained undeterred. I could always go in the early afternoons.

Little did I know I would encounter an even more terrifying locker room adversary; an adversary who could get into my head. I feel almost guilty introducing her to you, because she’ll get into your head, too.

But maybe she needs no introduction; chances are, you already know a version of her. Perhaps you are a version of her. She is The Suburban Soccer Mom. All she does is judge. And judge. And judge.

Oh yes, and one other thing; The Suburban Soccer Mom never shuts up.

My first early afternoon swim went…swimmingly. I’d had a lane to myself. I could shut out awareness of all the other swimmers, but better still, I could shut out all my own thoughts. Swimming is my moving meditation. My mantra is simple…I count as I stroke. One. Two. Three. Breathe.

I headed to the locker room showers, dripping and peaceful. And then I heard a strident female voice.

“He’s says the kids should be there to have fun. I’m sorry, but if my daughter were winning a game every once in a while she’d have a lot more fun. Correct me if I’m wrong. Is there something not-fun about winning? Isn’t winning the point? Am I wrong, here? Am I wrong?”

A second, softer voice responded eagerly; a voice so soft I couldn’t hear a pandering word.

I stepped in a shower and turned on the water, hoping to drown The Suburban Soccer Mom out. I tried to regain the calm I’d felt after forty-five minutes of laps, of forming no words in my head besides “one, two, three.” I lingered in the shower a bit longer than usual, giving the Suburban Soccer Mom ample opportunity to exhaust her case against her daughter’s fun-loving/fun-destroying soccer coach.

As it happened, by the time I was done with my shower, The Suburban Soccer Mom was done lambasting her daughter’s soccer coach. She’d moved on to lambasting her father-in-law.

“He expects me to feel sorry for him because he just had back surgery. Why should I? It’s his own damn fault he needed the surgery. He’s too damn fat. His spine couldn’t take it. No surprise there. He should have gone on a diet. He should have gotten off his fat ass and exercised. Instead he runs to a doctor. You want to know the real problem with health care costs in this country? People are too damn lazy. They’re too damn lazy and they’re too damn fat. They overeat, and then they transfer the burden to the rest of us.”

I had to pass The Suburban Soccer Mom on my way to my locker. I didn’t give her glance. I try to avoid looking directly at the other naked women, with the presumption they might extend the same courtesy to me. Even though I didn’t look at The Suburban Soccer Mom directly, there are things I can tell you for certain about her appearance. The Suburban Soccer Mom is blonde and trim, though perhaps no more trim than I am. I can also assure you she must appear perfectly, unassailably normal. She couldn’t possibly tolerate herself otherwise.

I could not help but look directly at The Suburban Soccer Mom soft-voiced companion; she was cowering in front of my locker. The soft-voiced companion was soft-bodied. Her eyes bulged out in terror at the sound of the word, fat.

Once again, I found myself changing into dry clothes as quickly as possible to make a speedy exit from the YMCA locker room. I pitied the The Suburban Soccer Mom for her malady; an unrelenting/unremitting chronic illness that was causing her to assume she is surrounded by inferiors. If only she’d leave off judging everyone, she could be a happier person. If only she was more like…me.

On subsequent visits I heard subsequent rants. When The Suburban Soccer Mom was in a good mood, she’d alternate her judgments of other people’s failings with reports of her own successes; the laps she’d swum, the triathlons she’d won. According to The Suburban Soccer Mom, the world would be a much better place if we would all be more…like her.

And that’s how I ran afoul of The Suburban Soccer Mom. One afternoon she happened to notice that I am not at all like her.

That particular afternoon, I was fighting against fatigue. Fatigue is one of the toughest elements to deal with in MS. It feels like a personal failure. The Suburban Soccer Mom in me told me to drive to the YMCA and do my laps, though The Henry’s Mom in me thought I should save my energy so I’d still have enough vigor to pick my son up from school, to snack with him, to talk with him, to walk the dog with him, and after all that, to make the family dinner. I compromised. I decided to still swim laps, but only for fifteen minutes.

As I stashed my street clothes in the locker room, I heard The Suburban Soccer Mom announcing to the assembled that she and her daughter would be going out for a jog. I happened to return from my fifteen-minute lap swim just as The Suburban Soccer Mom was announcing to those assembled that her daughter had just texted to cancel their jog. Oh, Sububran Soccer Mom’s daughter, wherever you are, I took the bullet for you that time. Your mother looked up from her cell phone, and found a target in me .

“Well, that was the shortest swim I’ve ever heard of.”

That was it. That’s all The Suburban Soccer Mom said. Yet I didn’t go back to the YMCA for two months. The next time I felt fatigue, I stayed home. And so on, for almost three months.

I shouldn’t bother to spend any more energy dissecting what is wrong with The Suburban Soccer Mom. I ought to figure out what the heck is wrong with me. I gave up something I loved to avoid someone I hated. Maybe I ought to do a little less hating. Maybe the prescription I’ve been writing for The Suburban Soccer Mom is prescription I ought be writing for myself.

I’ll have you know that on Friday I did return to the YMCA. There was a notice posted on the front door, regretfully announcing that though the lifeguard was on duty, the pool heater was broken.

Perfect. I learned a folk saying back in the days when I lived with the good, decent people of Minnesota. The cold keeps the riff-raff out. Sure enough, the pool was empty. I could swim in any lane that I pleased, for as long or as short a time as I pleased. Better yet, the locker room was empty, too.

I’ve got to go. The pool is only open another hour. I’ve got to get in my fifteen minutes of laps.

author’s note: On the drive home from a cold, solitary swim, I heard this thoughtful discussion about judging the judger on NPR. Listen and learn: http://www.npr.org/2011/01/10/132809627/concrete-ways-to-live-a-compassionate-life

For my review of “12 Steps to a Compassionate Life,” the book under discussion on NPR that day, connect to Goodreads http://www.goodreads.com/review/show/144053847

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Pretest

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