Monthly Archives: April 2011

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.