“Lies are what the world lives on, and those who can face the challenge of the truth and build their lives to accord are finally not many, but the very few.” -Joseph Campbell
When I first went on daclizumab, I was euphoric. After going through six neurologists, and three MS medications, I finally found a brilliant neurologist who had uncovered an off-label medication that appeared to actually work.
My husband remained unmoved. He girded himself for every outcome, including the possibility that the medication would fail.
I shared his neutrality. At first. But then daclizumab surpassed my expectations. I had wanted nothing more than a medication that would prevent further exacerbations. What I got was a medication that did all that and more. Suddenly, I felt…able. I was able to hike and swim and lift weights. So I did. I pushed my suddenly able body to astonishing new limits. I rode the wave. I soared. My husband stood steadfast, like a beacon on the shore. He appreciated my toned body, but he didn’t expect it to last.
Indeed, it didn’t last.
No body lasts.
Love lasts.
Years passed. My physical capabilities became less and less astonishing. I had very much enjoyed becoming super-fit. As my physical parameters kept shrinking, I kept pushing back. It was with great reluctance that I finally learned to stop wanting more of my body than it can deliver.
This week, my hard-won acceptance was put to the test. I would have to also learn to stop wanting more of my medication than it can deliver.
The moment of truth arrived on Tuesday. I finally received the news my husband has been girding against ever since I started taking daclizumab, shortly after Tysabri was pulled from the market in ‘05. In all that time, my MRI’s have always come back with no further lesions. I’ve been lucky.
I’ve kept up on the preliminary results of the daclizumab trials, and while they are impressive, I couldn’t help but notice there hasn’t been a 100% cessation of disease activity across the board. Something had to give.
Now finally, something has.
My latest MRI came back with one enhanced lesion.
Just one little lesion, located in the so-called “silent area.” My local neurologist doesn’t think one lesion would be worth attacking with steroids. (And I must say, I’m relieved.)
The news of the MRI didn’t shock me. It was almost a comfort. I already knew I wasn’t well. It actually felt good to have some confirmation that there was a reason, even if that reason was inconveniently screaming from the “silent area.”
Daclizumab has worked wonders for me. But it is what is. It’s a medication—the best I’ve ever taken. It is not a miracle. It is not a cure.
Daclizumab is fallible. Just like me. That doesn’t mean it’s a failure.
I’m glad I haven’t been afraid to hope. Hope did me no harm, after all. Yes, I was once euphoric, but with good reason. I’d been given a reprieve. When the facts changed, I didn’t break. I changed along with them.
It’s been a good ride.
Adventures
A simple dog walk exposes the fine line between faith and folly.
Made in the USA
Yesterday, I blogged about my discontent with the fact that over 80% of the active ingredients in the drugs we take are being made in far-off places with little or no federal inspection. Until more people know this fact, there is no incentive for change. So here’s my proposal: Every bottle of pills, every IV bag, should list the country of ingredient origin in at least 6 point type. When you buy a carton of orange juice, the carton has to list which country the oranges come from in at least six point type. Why aren’t drugs labeled like food? We ought to expect drug companies to list where their drugs come from. And I’d like those labels to say, in at least six point type: MADE IN THE U.S.A.
Author’s note: Little did I imagine as I was writing this that Merck is pulling up to 13,000 jobs out of the United States and other developed nations to employ workers in “emerging markets.”
I Want Safe Drugs
Yesterday, Big Pharma bankrolled my 7am flight to DC and my subsequent MRI at the NIH. I’ve been feeling wretched, despite the experimental drug I’ve been taking for multiple sclerosis, and I wanted to know why. My return flight arrived six hours late, at 1:30 this morning. A few hours later, I got a call from the NIH. The MRI report is not complete, but so far it shows that I have one new contrasting lesion.
Question: what should I do about this lesion?
It is very likely that a course of IV steroids would zap me back into health. My neurologist claims there’s no long term benefit, but I’ll take a short term benefit if it means I’ll no longer be dizzy and nauseous and fatigued and tingly and struggling with my gait. Besides, in my personal experience, the relapses that I haven’t treated with steroids were the ones that produced the symptoms that persist. I once skipped a round of steroids so I could take a vacation in Maine. The tingling in my fingertips with every tap of the keyboard serves as a suggestion that maybe I should have delayed the trip a couple days.
A course of IV steroids is nothing to take lightly. For one thing, it’s expensive. That’s no problem. We have insurance. We have money. We can afford it.
For another thing, a course of IV steroids is physically and psychologically grueling. I’m likely to get ornery. I’m likely to get hungry. I’m not all that likely to get any sleep. My family and I will have to endure a few days of my feeling like a big fat angry monster. No problem. We’ve survived rounds of steroids before.
We’ve been lucky to survive. Because here’s the real problem: It’s a social, economic, and political matter, and it concerns you, gentle reader, and every person you know who takes or will take a drug.
You may not be aware of this, but the ingredients in our drugs are increasingly manufactured in India and China. What with illness and travel, I’ve been behind the Times, so to speak, and only just now got around to reading Saturday’s front page article, “Deal in Place for Inspecting Foreign Drug Suppliers, A Glimpse at Suppliers in Shadows Abroad.”
Apparently, “More than 80 percent of the active ingredients for drugs sold in the United States are made abroad, mostly in a shadowy network of facilities in China and India that are rarely visited by government inspectors”
This is a problem.
I don’t know where the steroids are coming from. But I do know they are typically flushed with heparin. Does the name “heparin” sound vaguely familiar to you? You might recall the scandal a few years back, when “Chinese manufacturers deliberately substituted a cheap fake for the dried pig intestines used to make the blood-thinning drug heparin. The tainted drug was linked to 81 deaths and exposed tens of thousands of people to danger. The F.D.A. never inspected the plants making the crucial ingredients, a larger problem that only now, more than three years later, may be fixed.”
What if that heparin problem isn’t fixed? Do I unwitting submit to paying for “a cheap fake” coursing through my veins? Or do I not take the drug, and continue to suffer?
Now, the whole purpose of the Times article was to celebrate a “breakthrough” in foreign inspection. There is currently legislation on the table. “The proposed solution to this problem is for generic pharma companies to pay the FDA $299 million/year to send representatives from the FDA all around the world for bi-annual inspections.”
I don’t think too highly of this solution.
There’s one other issue that’s been in the papers lately. Way too many Americans are out of work.
Why not bring the drug manufacturing jobs back to the USA?
Drugs could be more easily inspected. Americans could get back to work again. Patients like me can feel confident that the drugs we are taking will help us, not harm us. Drug companies, generic and non-generic, can avoid further scandal, like the Tylenol debacle that broke out just today.
As a lab rat, I have some inkling of all the care and expense and governmental cooperation that goes into testing a new drug. Why let that work go to waste with a sloppy end product?
I may just use my steroid fueled ornery energy to see what a big fat angry monster can do to get some real change going in the way our drugs are manufactured and inspected. I believe there’s a real opportunity for the first major drug company to tout their drugs as being manufactured and monitored right here in the USA.
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.
“Aloha.”
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.
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.
“Aloha.”
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!
Aloha.
For more about the joy available to all, watch this talk by Srikumar Rao.
The Great Puppeteer
The Great Puppeteer let go of my strings for a few days, so I was unable to walk or even think, really. I am walking again today. When you see my next post, you will know I am all better.
Gratitude
This morning, my local neurologist sat me down after performing my annual exam. For the exam, she’d checked my reflexes, had me follow her fingers with my eyes, had me push against her (“you’re strong”), had me stand on one leg, then on the other, had me walk on tip-toe, walk on my heels, walk a (flawless) heel-to-toe.
She prefaced her conclusion by saying, “You might be unhappy to hear to this.” Naturally, I was all ears. “How long did you say you’ve been diagnosed with MS?”
“Sixteen years. I’ve had MS for over twenty years.”
“Over twenty years? And you can still swim laps for thirty minutes?”
“But not for thirty five.”
She nodded. “Not for thirty five. Swimming laps for thirty minutes is really good for someone who has had MS for over twenty years. Maybe you don’t want to hear this, maybe you want to do better, but you are doing very well.”
I corrected her assumption. “I do want to hear that. I’m so glad I’m doing well.”
I’d reported to her, earlier, that the parameters of my abilities are shrinking. I’d wondered aloud if I was transitioning into Secondary Progressive MS. “I can’t do as much as I used to. I can’t walk as long, or as fast. Every time I push myself, the MS pushes back.”
She’d agreed with my tentative assessment. “I often see this kind of gradual decline with people who have a mild form of MS.”
There was once a time when I would have bristled at that remark. I would have resented the suggestion that my nemesis, MS, could be described as “mild.” There was nothing mild about the pain I was experiencing right there in her office, which was why I had swung my aching leg up onto her examination table and used the table as a barre to stretch.
There was a time when I wasn’t willing to believe the MS could get any worse.
I know better, now.
My neurologist sees worse cases of MS every day. At least these days she can tell her patients that there are effective medications —medications like the one I’m on—in the research pipeline. There’s much more reason for hope than there was back when I was diagnosed.
And that is why today’s post is simply a post of gratitude.
I am very grateful.
Grateful for having a fine local neurologist.
Grateful for having insurance.
Grateful for having a $15 co-pay.
Grateful for being on an effective medication.
Grateful to be receiving that medication free of charge through an NIH study.
Grateful to have friends and family who support me. (It’s not too late, by the way, to support me in the MS Walk.)
Grateful to be able to swim 30 minutes of laps.
Grateful you visited this blog.
Grateful that yesterday, somebody searched Google for “Happiness with Multiple Sclerosis” and ended up on here on Ms. Lab Rat. What a hoot!
Am I happy with Multiple Sclerosis, the disease? Nope. I can’t say that I am. I hate this disease.
But am I happy, despite Multiple Sclerosis? You bet.
I welcome all seekers of happiness, with or without Multiple Sclerosis.
Thanks for visiting.
Miffed vs. Pissed
The other day, I got really miffed when someone stole my handicapped parking decal. I was so put out, I did something atypical. I posted my emotional state on Facebook.
My dear friend, the novelist Goldberry Long, posted a rapid-fire reply. “Miffed? Shoot, I’d be pissed.”
When I read her words, I felt…nostalgic.
Just then I realized I haven’t been properly pissed off in ages. Not recreationally so. There used to be a time when I would have a lot of fun raging, describing, in ebullient detail, the myriad of ways in which I was right and the opposing party was dead stinkin’ wrong.
A few things happened along the way. I had a baby. Babies aren’t particularly entertained by excoriating critiques of social norms. I quickly discovered I had to take it all down a notch. A baby is a powerful motivator. So is multiple sclerosis.
Multiple Sclerosis loves the rage state. Whenever I get pissed off, MS gets pissed off, too. It musters an army of zombie T-cells to attack…my own immune system. Who wins that battle? Take a look at any of my MRIs.
So yeah, if fear of rousing my own baby weren’t enough to keep me in check, fear of rousing another MS attack would eventually polish off my rougher edges.
Getting pissed off just wasn’t fun any more.
Now my kid is fifteen. My MS is in check. Fifteen year olds happen to find excoriating critiques of social norms f’n hilarious. Even so, I find I’m somewhat out of practice at getting recreationally pissed off.
Goldberry wrote, “I’m going all the way to rage for you, Lisa.” And that prompted a wistful smile.
Though I no longer can afford to get pissed off recreationally, perhaps I can become be a fan of those who do so on my behalf. A vicarious thrill never hurt anybody.
Go, Goldberry!
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! https://www.facebook.com/notes/rick-penders-theater-stages-scenes/true-theatre-truly-surprising/197718950266519
You won’t want to miss the next show, themed trueIndepence:
http://www.cinstages.com/Onstage/proddetail.asp?ProdID=130315.
trueFoolishness: The Handicapped Decal
April 11, 2011, Know Theatre:
Somebody stole my handipcapped parking decal this weekend.
This is what I’m hoping. I’m hoping you’re a little confused. I’m hoping, as you look at me, you’re thinking, why would she need a handicapped parking decal? She doesn’t look handicapped.
‘Cause that’s what I thought, too.
I was diagnosed with Multiple Sclerosis in 1994. It would take me over eight years of hemming and hawing and handwringing to finally get around to applying for a handicapped parking decal.
Me? Handicapped?
I wasn’t handicapped.
Yeah, I had MS. But I didn’t think that meant I was handicapped. The figure in handicapped icon is in a wheelchair. I wasn’t in a wheelchair. Not most of the time.
I have the Relapsing/Remitting form of MS. The most moderate form of multiple sclerosis there is. MS for wimps. In the early weeks, I attempted to educate myself about the disease by meeting other people with MS. Bad idea. Most of them had Primary Progressive Multiple Sclerosis, a way harsher form of the same disease. If Relapsing/Remitting MS is like MS for wimps, Primary/Progressive MS is MS for heroes. I wasn’ t a hero. And I was in no hurry to become one.
I’ve gotta admit, I was put off by the wheelchairs. And the walkers…and the speech impediments. I was downright terrified by the cognitive losses. The loss…for…words.
The Primary Progressives, they tried their best to inspire me.
Instead, they scared the shit out of me. Let me make one thing perfectly clear. When I say the Primary Progressives scared the shit out of me, I am not speaking literally. An important distinction between me, and some brave souls with Primary Progressive MS.
Primary Progressives, they could keep their heroic positive outlook. They could keep their handicapped parking spots. I didn’t want to go there.
But there was always the likelihood that I would end up there eventually.
Multiple Sclerosis is an insidious disease. It turns the T-cells of your own immune system against you. T-cells are designed to attack outside invaders. But once MS gets hold of them, they turn into zombies, and they mindlessly march forward and attack your own Central Nervous System instead.
What happens when your zombie T-cells rip open the myelin sheath protecting your nerve cells? That all depends on three important factors: location, location, location.
No two people with MS have the same symptoms, because no two people are struck with attacks in exactly the same locations. Over the years, I’ve taken a lot of comfort in that. But let’s face it, there is no good place in your Central Nervous System to suffer an attack. Let’s think about the role of the Central Nervous System— the brain and the spinal cord. Together, they coordinate just about every aspect of yourself, functions you think you control, like your speech, your range of motion, your ability to swallow, oh yeah, and your ability to void your bladder…your bowels. They also control all those functions you take for granted that go on without your conscious direction, functions like your heartbeat.
Scary, huh?
Many of my earliest MS attacks happened to have taken place on my spinal cord, and those attacks caused sensory symptoms; numbness and tingling in my legs; damage no one else could see.
Once, the tingling went all the way up my bra line. Only once. After a few hours, it went back down again. That’s classic example of RRMS. The beauty of it is, some symptoms show up, and then they disappear for good.
Consequently, I never do get too attached to my MS symptoms. I expect them to leave me. Some symptoms, the oldest ones, seem to have more trouble letting go than others. Some keep coming back for more.
One symptom in particular just kept coming back. There were moments when my legs would dissolve from beneath me. Those moments would come with no notice while my husband and I would be out on the town. Maybe I’d be just fine walking to the car, but then I wouldn’t be able to walk back out. My husband would have to take on the dual role of valet-parking-attendant/living-human-crutch, and would be forced to juggle parking the wife with parking the car. A handicapped-parking permit would have made those moments a lot easier. For my husband.
But me?
I regarded those moments as flukes. Was there some sort of Momentarily Handicapped Decal? A Relapsing/Remitting Decal? A handicapped icon without a wheelchair? I’d take one of those.
But they don’t make ‘em.
Over the years, those flukes piled up. Too many flukes, and you’ve got yourself a trend.
Most memorably, there was the Wisdom Tooth Fluke. We had planned for my husband to get IV valium that morning. We hadn’t planned for the ice storm. We hadn’t planned for my legs to give out the moment my husband draped his arm around me. The dentist had to request two wheelchairs, and two orderlies, to escort us both out. We were wheeled as far as the exit, where we sat side-by-side in our matching wheelchairs and stared across a glassy parking lot of solid ice. Our little green Ford Escort was parked somewhere out in the back. Yep.
The dentist had been generous with his valium. My husband was generous with his praise of the orderlies, even as they informed us we had reached the end of the line. “Thanks for the ride, guys, you’re the best. Fun!”
This, after they told us they weren’t authorized to take us any further.
So after the wisdom tooth fluke, you would think I would apply for a handicapped parking decal. No way. My husband couldn’t lose all his wisdom teeth twice, right?
Years went by. We moved to Connecticut, to be closer to my parents, to have more people to lean on during those little flukes. I ignored all the tactful suggestions that our life could be easier with a handicapped decal. I wasn’t focused on being handicapped. I was focused on having a baby, while I was still up and about. And then I was focused on raising our son.
But MS isn’t like a plant that dies if you ignore it. The MS was thriving, with or without my attention.
Remember those tingly sensations I was telling you about? That sensations only got worse when I tapped the gas and the brake.
I had a job teaching fiction writing workshops. I had to drive to get there, right? If there’s anything MS has taught me, it’s to be resourceful. I would count on using cruise control on the highways, instead of the gas and the brake. The only problem was the traffic jams.
After twenty minutes of so of a traffic jam, the tingling sensation would build to something excruciating. It was more than a little distracting. I was a mother now. I couldn’t die on the highway. My little guy couldn’t die on the highway. Cruise control wasn’t adequate. I had to resort to a new Plan B. I graduated from cruise control to hand controls.
And that’s how I met Luigi, the man who would finally convince me to apply for a handicapped decal. Luigi was a professional. He was sent by the State of CT to train me how to use hand controls. I picked it up right away, faster, he said, than his usual MS clients. Luigi was obligated by the State of CT to stick around and watch me drive for three entire days. Near the end of our sessions, he asked why I didn’t have a handicapped decal. All his other drivers with MS had decals. Why didn’t I?
I was hurt. Didn’t he get it? Hadn’t he said I was different than his other MS clients?
I asked, in all seriousness, “You think the State would give me one?”
Luigi looked at me funny for a moment. I couldn’t figure out what his expression meant. I decided not to read anything into it. But something was up.
After a long pause, Luigi finally spoke. “You say you’re a writer. A fiction writer. Just write up a good case to your neurologist. If you make convincing, he’ll set you up with a handicapped parking decal.”
Well, since he put it that way, I could see the logic. Applying for the decal would be like applying for the hand controls. I approached the task as a way to milk another perk from the leaky system, to obtain another little trophy, like that nifty new turning knob on my steering wheel.
I wanted to write that letter as a fiction writer, but the truth kept getting in the way. The thing turned into a long, tortured, multiparagraph treatise on how I would only use the decal for good, never for evil, how I would never park in a handicapped spot on my good days, just because the spot was there and I was already late for the movie and there were all those other handicapped spots open if any more-deserving handicapped-er driver happened to need one. Or something to that effect.
I posted the letter like I post submissions to the New Yorker. I had very little hope my neurologist would buy my story, and even less hope that the State of CT would ever be conned into sending a real honest to God handicapped parking permit to a healthy person like me.
Once I sent the letter, I forget all about it. One day insultingly soon thereafter, I got a package in the mail from the State of CT.
My six-year-old son watched me pull the handicapped decal out of the envelope. There it was, the icon in the wheelchair. I very much aware I was being watched.
“Good news!” I cried. “I got a handicapped parking decal.”
My eyes went to the expiration date.
LIFETIME
That meant I would never have to apply for another handicapped decal.
LIFETIME
That meant I was officially handicapped for life.
My son’s eyes had gone wide. He stood transfixed on the staircase, studying me. “Are you sure that’s good news, Mommy?”
“Of course it’s good news.”
Already, I was thinking that LIFETIME bit would some day seem ironic. No way would I would I be handicapped for life. There would be something, some medication that would stop the T-cells from turning into zombies. Some medication to fix all the damage in my brain. I would take it, me and all the other brain damaged people, and everyone else would be jealous of us. We would turn into some superior race.
That very afternoon, I drove my son to his favorite place in the whole world, The Peabody Museum. We got to park directly in front, instead of having to park in the lot two city blocks behind the entrance. Which meant Mommy got to stand by his side a whole ten minutes longer in the Great Hall of Dinosaurs. It didn’t take me too long to figure out that we’d missed out on many many ten minute increments of our precious time together in all the years I’d been too proud, or worse, too vain, to apply for a handicapped permit.
It took me until tonight to figure out the real villain in the story of the wisdom tooth fluke. It wasn’t the orderlies who wanted to leave us in our wheelchairs at the edge of the icy parking lot—and by the way, I did not let them get away with that. No. I was angry at them, really angry, but maybe because, deep in my heart, I already knew the real villian in the Wisdom Tooth story was me. I’d been one to park the car at the back of the freaking icy lot. All because I’d been too proud…or worse, too vain, to break down and admit I was a handicapped person, who needed a handicapped parking space.
But I’m not going to get too harsh on myself.
The objective truth of the matter is, nobody wants a handicapped parking space.
Since our family moved to Cincinnati, our car has been broken into four times. The first three times, the thieves took the GPS, and left the handicapped-parking permit untouched. It was almost insulting. I’ve gone through hell with Multiple Sclerosis, and all I’ve got to show for it is a lousy Handicapped Parking Permit.
It has to be worth something, right?
This weekend, a thief finally agreed with me. Whoever nabbed the thing validated my observation that a handicapped parking permit is actually worth quite a lot. This time around, I won’t be wasting eight years hemming and hawing and handwringing before I get around to applying for another handicapped parking decal. I’ve already downloaded, printed, and filled out the form.
As for a letter to my neurologist? I think this one will do.
author’s note: I tried to get away with using an earlier version of this story based on my blog post, “Expiration Date.” That version only runs about three minutes. The producers, Dave Levy and Jeff Groh, wanted something that ran at least ten. They very patiently endured my objections, as a writer, that I could tell only the essentials of my story, that an extra seven minutes would be just fluff. And then they helped me dig deeper, and mine the many comic possibilites I’d been too blind to see.
Jeff and Dave, this one’s for you.
A Wheelchair in Paris
True confession: I hesitated about renting a wheelchair in Paris, because that would put me literally beneath Parisians, and yes—I’d been gullible enough to believe all the hype about Parisians being arrogant snobs. This misconception evaporated on the bus ride in from the Charles de Gaulle airport. I looked around, and saw people who reminded me of another slandered tribe, the New Yorkers. I was born a New Yorker. I’d always laughed at people who were too chicken to visit New York City. Oh, my. It was time to laugh at myself. I’d been as terrified of Paris as any Manhattan-fearing yokel from upstate.
My early years in the Bronx were replete with lectures about how to appear street-smart. I’d known since before I could walk by myself that you were never walk around a city street with an open map. Before we left for Paris, I read the warnings about gypsies attacking tourists near metro stops. When my more trusting, Midwestern-raised husband opened a map near the bus terminal at Charles de Gaulle, a woman with a head scarf approached us…and offered to help us find our way to the correct stop. My pocket was not picked. But my false pride was pricked.
I would put off renting a wheelchair until after a side trip to visit my friend Laura in the French Riviera. There I found I was able to walk most of a mild 2k loop through the glowing inner sanctum of gorgeous Nice. My legs went all heavy and numb before we’d quite made it to the parking lot just past the gazzillion dollar yachts, which left Laura in the uncomfortable position of having to dash off for her car, and pull up for me in the middle of a very busy street. After that incident, my husband asked Laura for translations of a few handy phrases. How do you say “multiple sclerosis” in French? How do you say,”wheelchair”?
Once we rented the wheelchair, we were able to see much more of Paris than we would have if we’d constrained ourselves to my current level of mobility. One of the many charms of Paris is that it’s a walkable city. As it turned out, Paris is also fairly wheel-able. There are cut corners at nearly all the intersections in Paris, and not nearly as many cobblestones as I had feared.
The sidewalks weren’t much of a problem with a wheelchair. What about the Metro? That wasn’t too tough for us, either. If I’d been on my own, I would have taken advantage of the law that states that taxi drivers are required to assist the wheelchair-bound. But since I had my husband and son to carry the wheelchair up and down the Metro stairs, we went that route, instead. I decided not to worry about what Parisians thought of me getting in and out of the wheelchair at the staircases. As it turned out, Parisians did wave and shout at us—but only to gesture us toward the subway elevators. So as not to paint too rosy a picture, I admit those elevators smelled of piss. But they were there. Not on all lines. But on some.
As it turned out, a wheelchair in Paris became something of a perk. My husband and I were shown to the beginning of every line at every museum, and qualified for free admission, just like our 15 year old son.
My favorite wheelchair moment occurred on the Eiffel Tower. After we took in the views from the platform, my husband, son and I waited on line for the elevator back down. It looked from my humble, wheelchair bound vantage point that elevator was full by the time we got to the door. My husband waved the elevator on. Then the nicest thing happened. The people in the elevator shifted, and stepped back, forming semi circle just big enough to include the three of us. My husband went ahead, and wheeled me on. I wished, at that moment, I could be eye-level with all the grownups, to thank each and every one, but it was nice enough to just be eye level with the kids.
The city I’d always assumed would snub me was instead a place of welcome and accommodation. Yet another useless fear discarded.
(This replaces “Ms. Lab Rat Loves France.” Sorry, subscribers: I don’t know how the final draft emerged with a headline, and no text. One clumsy move on an unfamiliar cell phone?)
Ms Lab Rat 
