Over. Next. And Best of All: Now.

A few weeks ago I heard some sage advice in a podcast by the indefatigably creative Norman Lear. He said that two words have served him well in his long life: “over” and “next.”

I’ve been trying those words out lately, and they really do add a lot of clarity.

As of yesterday afternoon, my surgery is over. What a relief that is. The surgeon scooped out those weird cells she was worried about, and now those cells are hers and not mine. Phew. She left her initials on my chest, above a pretty half moon scar.

My husband spent the whole day in the hospital with me, and drove me home to my first meal in twenty hours, which probably wouldn’t have had to be exquisite for me to appreciate it. But his meal was exquisite. He played us Miles Davis all night. Bliss.

exquisite

Today has wound up being one of the best days of my life. My student Barb showed up this morning with Italian wedding soup, which was utterly delicious.

barbsoup

I’ve been inundated with phone calls and texts from friends checking up on me, delaying my progress in updating this blog.

What comes next? The results come next. I don’t expect they will find any cancer, but if they do, that would handy to know, because the next MS drug I want to take seems to be associated with a slight uptick in breast cancer. I’ve chosen to switch from Zinbryta to Ocrevus. Dr. Z., my local MS doctor, has worked with Ocrevus since 2012 and has seen good results; in some cases, Ocrevus has not merely slowed disability—it has ushered in improvement. It’s been a long time since I’ve been able to say I’ve seen improvement on Zinbryta. I am ready for this change.

Zinbryta is over. Ocrevus is next.

I’d like to add one word to the Norman Lear mantra of “over” and “next.” And that’s the Ms. Lab Rat mantra of “now.” I think now has been exactly the right time for me to have had this surgery. Zinbryta may have been great for tamping down the overactive immune response of my MS, but it’s been lousy at permitting me to heal. On Zinbryta, I’d had one skinned knee that took five months to close up.  I am glad I’m going to get a few weeks of reprieve between drugs that rely on super strong monoclonal antibody action. My half-moon scar will need this time to heal.

Thank you for reading!

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MS Blog with Boob Pic

Ms. Lab Rat is supposed to be a blog about an intrepid gal who joins clinical trial after clinical trial, surfing on the cutting edge of multiple sclerosis research.
Ms. Lab Rat is not supposed to be a blog about an anxious gal whose left breast is on the cutting edge of a surgical scalpel. But that’s where this MS blogger will be, while The Art Academy is closed for Spring Break.
Sorry.
(I know, I know, I shouldn’t be the one saying sorry. But have you have ever met a person who did not apologize for a physical misfortune beyond their control, be it mild hearing loss, Sorry, could you repeat that?—to terminal cancer, I’m so sorry I won’t live to see my baby graduate high school. You want to say: I’m the one who’s sorry.)
In this case, Gentle Reader, you needn’t be sorry for Ms. Lab Rat—yet. I have health insurance. (Thanks, husband.) I have a support system in place. (Thanks husband/family/friends.) And I don’t have cancer. (As far as the pathologists can tell.)
What I do have are a few cells that kind of look like they could turn into cancer…or look like the type of cells that tend to hang out with cancer cells. The pathologists couldn’t really agree on what to make of these suspicious cells. Which was why it took them a week, and not the promised one to three days, to call me.
As it happened, I got this call just two hours after I’d learned I have severe osteoporosis, and just a half an hour before I was scheduled to teach Artist as Reader. I was in the middle of an enormous copy job, which involved making 17 two-sided copies of the 92 page screenplay of Get Out. The call made me laugh. Two bad health updates in two hours? Who gets that? It seemed too bad to be true. My biggest fear remained the complicated copy job. I really really hate copier jams, especially so close to class time. Trivial frustrations like that are somehow harder for me to take then even super grim news. The printer didn’t jam. I was genuinely relieved, and genuinely curious to see what my students would think of the manuscript. I couldn’t be bothered to update my blog post about my osteoporosis diagnosis with a dramatic PS. I had a class to teach. Besides, my mom reads my blog. (Hi, Mom!) I didn’t want to worry her.
I am now scheduled for a third biopsy, a surgical excision that will scoop out the entire perplexing nodule and resolve any unanswered question. I’ll be glad to be rid of the uncertainty. I’m not yet skilled at living with anxiety. Last night, I had a hard time getting back to sleep after my 4th or 5th fourth trip to the bathroom (thank you, MS bladder.) I tried meditation after meditation, but stayed awake from 2am to almost 4. (I fell asleep just fine after trips seven and six.) OK, maybe it’s time to botox the old bladder again. Do you see how living with MS is in itself a full time job?
I was grateful to have yoga today, to help me unwind and expand, physically and mentally. As I had hoped, I was not the only student at this week’s class for yoga with MS and Parkinson’s. I met two intelligent, ambitious women there, an accomplished artist and an accomplished writer, and best of all, I got to catch up with my buddy Monica. We lingered over our Wahls-compliant lunches to chat about breast biopsies, and so much more. In a few short weeks, we’ll have matching scars.
It seems no MS story is as simple as just one diagnosis. At least, not for those of us lucky enough to be living decades with MS—long enough to encounter the usual trials of mere aging. Maybe Ms. Lab Rat is a typical MS blog, after all.

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Wahls Elimination Diet vs Swank Diet: Which Is the More Effective Treatment for MS Related Fatigue? Ms. Lab Rat jumps into the maze.

Some Background (faithful readers can skip to paragraph 5):

As my faithful readers know, I am a machine with faulty wiring. Multiple Sclerosis has somehow managed to convince my T-cells to attack the insulation that surrounds the nerves conducting all the information my body needs to function optimally. This insulation is called myelin, and my myelin is ratty with scars. (Multiple sclerosis=many scars.)

When I got the diagnosis, I refused to accept my fate. I tried the first medication I was offered. And when that didn’t work, I tried a second. And when that didn’t work, I entered a clinical study of a new medication, one, I was told, that really made a difference. But as will happen 50% of the time with clinical studies, it turned out I was assigned to the control group. I didn’t get the new medication. I got a placebo. And I got more scars.

I not only tried new medications, I tried new doctors. (I moved around a lot, at first, so that part could not be helped.) When my fourth neurologist gave me the dour news that I was doing very badly, and could expect to do worse, and then much worse until I died, well, I switched to a cheerier doctor. Who gave me the same dire news, but with a big smile. I dumped her, too. Instead I found a brilliant researcher, Bibiana Bielekova. Researchers are always looking for better ways to do things. So am I.

Long story short, I talked Dr. Bielekova into letting me try an off-label drug that worked with the immune system, rather than fight it. Daclizumab works by boosting the population of Natural Killer Cells, which function like the good cops in the Wild West of my immune system; the Natural Killer Cells keep the rouge T-Cells, or bad cops, at bay. Daclizumab worked. The T-Cells stopped attacking my myelin. Eventually, the National Institutes of Health (NIH) funded a study of Daclizumab. I was lucky enough to join the safety arm of the study, so I was assured a constant supply of Daclizumab. In the last ten years, this medication has been so effective, the T-cells have only once managed to create a new scar. Earlier this year, the FDA apporved Daclizumab under the name Zinbryta. On the day I injected my last dose of free study medication, I was accepted into a new clinical trial.

Faithful readers, jump in here:

Finding a drug that stabilized my MS only solved half of my problem. While my T-cells have stopped chewing on the fatty myelin that insulates my nerves, the many scars created by years of insatiable gobbling still interrupt the signals of my central nervous system. I have to cope with fatigue, pain, lack of coordination and balance, and a digestive system that’s out to lunch. Oh yes, and a brain that continues to shrink. You would think, then, that a person as proactive as I am would have immediately acted when I saw a very convincing TED Talk by a smart researcher who overcame an even worse case of MS than mine. Like me, Dr. Terry Wahls took the latest greatest MS medication. And like me, her MS only got worse. Dr. Wahls soon found herself confined to a tilt-recline wheelchair. Unlike me, Dr. Wahls is a physician. She read the latest medical research about diseases in which brains shrink. She read studies in which animal brains had been protected from shrinkage using fish oil, creatine, and co-enzyme Q-10. She started taking human proportioned dosages of these substances, and started getting better. This was her first round of self-experimentation. Slowly but surely, she tweaked her diet to include and exclude certain nutrients and ultimately found herself out of the wheelchair, biking to a full day of work as a doctor, and, of course, promoting the diet that saved her. She managed to get the Multiple Sclerosis Society to chip in 1 million dollars to fund a scientific study to compare her diet with the Swank Diet, one that has been  found to help people with MS for decades. I, who was somehow too intimidated years ago to follow the Wahls Protocol, have now agreed to be part of this study, which is going to be a much more onerous and complicated option than simply buying her book and following along. How much more onerous and complicated? I’ll share the details in my next post. But strange as it is, a Lab Rat is a Lab Rat. I would rather experiment on my diet in a study as a contribution to the greater public knowledge than to simply tinker with the diet on my own.

How about you? Have you ever participated in a clincial trial? Would you?

 

 

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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Does it stop?

The other day, my husband found a cryptic message scrawled on a Post-it note by his computer: “Does it stop?”
He looked severe as he passed the note to me—so severe, I just had to laugh.
The content of the note was ominous. The form was ominous, too—the writing barely legible. Why, then, was I laughing?
Our son came rushing over to inspect the note. “That’s Mom’s handwriting.” I couldn’t argue with him. “But worse.”
Those two seemed so serious. Too serious. I tried to remember why I’d written, “Does it stop,” but nothing was coming to mind.
Two matching sets of brown eyes were fixed on me intently.
No pressure.
Does it stop? Does it stop?
Surely, I could not have been writing about multiple sclerosis. It’s been sixteen years since my diagnosis. C’mon, people. Give me some credit. I wouldn’t scribble an angst-ridden message about that.
Does it stop? I’d recently been on hold with the phone company. Had I written the note then?
Being on hold could feel interminable. But no. That wasn’t “it.” I didn’t write the Post-it while I was on hold.
Then, when?
What was, “it?”
It.
I quit laughing long enough to confess, “I don’t remember writing that.” Which merely served to ratchet up the tension. Apparently, I was not merely angst-ridden. I was amnesiac. And to top it off, I wasn’t even disturbed about being an angst-ridden amnesiac. There was the question of my laughter. Was my laughter not disturbing?
Sorry.
My son hypothesized, “Maybe you wrote it in your sleep.”
The note was indeed sloppy enough to have been sleep-written. But c’mon. I can—and do—write sloppily enough while fully conscious, as all who know me can attest.
I just didn’t buy the sleep hypothesis. But try as I might, I couldn’t disprove it. I could not recall the exact circumstances surrounding the Post-it note, which in my mind was an argument against its emotional significance. Surely, if I had crawled out of bed to scrawl a message from the depths of deep despair, wouldn’t seeing the note trigger some dark association? I was certain the Post-it had a trivial origin. Yet clearly, I was the only person in the room with that certainty.
For years, my husband has carried around this hip little black book—a Miquelrius—designated for jotting down his observations of my MS symptoms. I’ve never been tempted to peek inside. I find it all a bit… humiliating. When I’d first fantasized about becoming this man’s muse, I was thinking he might fill the pages of a very different little black book.
There is nothing remotely sexy about a long slow decline.
I could tell by the mood in the room that my husband was way past considering whether to include the Post-it note in his little black book. He was considering whether he should categorize the note as a symptom of depression, or as a symptom of cognitive loss. Both depression and cognitive loss crop up fairly often in the MS population.
I am no stranger to depression. Which is why I was pretty certain that, had I been struggling with depression, I would have been the very first to know.
Whereas, if I were struggling with cognitive loss—I would be the very last to know. Which made remembering the origin of the note all the more important. And all the more inaccessible.
The answer came to me a few hours later, while I was brushing my teeth. With my new electric toothbrush. The old electric toothbrush had made a buzzing sound every 30 seconds. It had put me in the habit of polishing every surface of each successive tooth, slowly and deliberately, so that each time the buzzer buzzed, I was exactly another quarter of the way through brushing. Four beeps equaled two minutes of another round of pristine dental hygiene. I would be just finishing the final wisdom tooth when the old electric toothbrush would emit a final, conclusive sounding buzz, and would turn off. The synchronicity had been very satisfying.
Over the years, however, brushing my teeth with the old electric toothbrush had become less than satisfying. The vibrations would cause the toothbrush head to shimmy up and off the communal toothbrush post. I quit using our old electric toothbrush months ago, preferring an old style manual toothbrush that didn’t suck up electricity or spit itself out. By the time my husband came around and bought us a new electric toothbrush set, I was thoroughly out of the habit of the two-minute brush.
Even so, I felt like the new electric toothbrush was working overtime. The new electric toothbrush beeped…and beeped…and beeped…and beeped, but I wasn’t in synch with it, like I’d been in synch with the old one. It seemed to me like this session was dragging on to be an awfully long two minutes. And then the answer to that nagging question finally came to me.
When I had written the Post-it note, I’d had a vibrating toothbrush in my mouth for what I could swear had been more than two minutes. The darn thing would just not shut off. I’d tried pressing the off button with my feeble finger. It only buzzed the louder. And vibrated more. So I’d sidled up to my strong-fingered husband as he tapped away on his computer. I couldn’t very well pull a vibrating toothbrush out of my mouth to ask him if this new fangled electric toothbrush was on a two-minute timer, like the last one. I reached for a pen. And a Post-it note.
And wrote…

author’s note: As it turns out, my husband had not posted the note in his little black book. He hadn’t been as concerned as I’d thought. When I went hunting for the visual aid, he recovered the crumpled Post-it from the trash.

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Ms. Lab Rat in trueFoolishness

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

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

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

 



 

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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.

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