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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The Immortal Life of Henrietta Lacks Asks the Wrong Questions

Rebecca Skloot’s painstakingly researched, thought provoking book, The Immortal Life of Henrietta Lacks, is the engaging story of a young white science writer who makes it her mission to humanize the patient behind the HeLa cells, a strain of apparently immortal cancer cells with a Zelig-like existence.

The HeLa cells have made and lost researchers millions of dollars. They’ve been instrumental in countless medical triumphs, and they’ve corrupted test results the world over. They’ve been shot into outer space, and into the arms of powerless prisoners. The HeLa cells originated in a woman who was never asked if she would agree to be a tissue donor, and who would never live to see any of the spectacular consequences of that surreptitious biopsy.

Henrietta Lacks was a young mother of five who felt a painful knot in her womb, and sought free medical care in the “colored” section of Johns Hopkins Hospital in 1951 Baltimore, Maryland. That knot was one of many fast growing tumors. The doctors at Johns Hopkins followed the treatment protocol of the day, and met with no success. The researchers at Johns Hopkins, however, met with great success. Their unpatented protocol for cell preservation would prove to create an ideal, indestructible new home for those aggressive tumor cells.

In the interest of promoting scientific progress, the Johns Hopkins researchers shared the HeLa cells, sending them out, without any motive of personal gain, to any scientist who requested them. As it happened, requests would flood in from all over the world.

Henrietta’s identity was, perhaps inevitably, certainly unforgivably, leaked. When news got back to the Lacks family, they were not as enthusiastic as the John Hopkins researchers about the notion of forfeiting personal gain for gains to society. They were all still smarting from their loss.

Rebecca Skloot chooses to open her book with a moving reflection by Henrietta’s daughter, Deborah, which reads, in part:
“But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors. Don’t make no sense. People got rich off my mother without us even knowin about then takin her cells, now we don’t get a dime…But I don’t got it in me to fight. I just want to know who my mother was. ”

Skloot does a fine job of telling us who Deborah’s mother was, and an even finer job of bringing Deborah Lacks to life on the page. But I think she does society a disservice by championing the Lacks children’s supposed right to profit from the cancer cells that killed their mother.

Why not  instead champion the right of every American to access to affordable medical care?

And why not acknowledge that the medical advances we’ve reached so far are due primarily to the innovations of brilliant doctors, scientists and researchers, and almost incidentally to the donors who provide the raw material?

As a donor myself, I am far more interested in promoting lasting scientific advances to the best of my limited abilities than I am in obtaining a quick buck. If every donor thought they were entitled to monetary gain, medical progress would freeze to a halt. As a person with multiple sclerosis, and moreover, as a person with a child in this world, I stand to lose a quite a lot if that were to happen.

Did an injustice take place at Johns Hopkins in 1951? You bet. The existence of separate sections for whites and colored was an injustice. I’m not sure I would go so far as to say that taking Henrietta’s cells without her permission was an injustice. I’d say it was a discourtesy. Those cells were doing their level best to kill her, after all. Henrietta Lacks was getting up-to-date medical care free of charge. If she had been asked for her cells as a form of payment, she could have had the opportunity to accept the treatment with a bit of dignity, knowing she was giving something of value in return. No one, in 1951, had any idea just how valuable those cells would turn out to be. Yet those cells would have had no value whatsoever if not for the innovations of Johns Hopkins researchers. Had they been turned over to the Lacks family, the HeLa cells would have been as valuable as nail clippings. Let’s not forget that.

The cover paragraph clearly intends to stoke outrage, and maybe not so incidentally, to sell a bunch of books:
“Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multi-million dollar industry. More than twenty years later, her children found out. Their lives would never be the same.

The Lacks children do bear considerable pain. Ms. Skloot’s own research points to the obvious party responsible for that pain, and it isn’t any researcher with deep pockets at Johns Hopkins.

If they want to locate a guilty party, they should look no further than their dad.

If anyone can claim credit for actively creating the HeLa cancer cells, it would have to be Henrietta’s first cousin and husband, David Lacks. David Lacks habitually cheated on Henrietta, infecting her with the multiple strains of syphilis that led to her cervical cancer and her untimely death.

David Lacks disregarded Henrietta’s dying plea that he care for their children. He left those children with a woman who beat them and starved them. This woman was particularly cruel to the youngest, Zakariyya. She would leave him bound in tight knots in their basement for hours at a time. Is it any wonder Zakariyya would later kill a man?

I don’t disagree that the Lacks children have suffered over the HeLa cells. But much of their suffering was caused by ignorance. They thought their actual mother has been cut up in pieces, squeezed out of syringes, blown up in nuclear tests, shot into space, and cloned into rat-women. Naturally, they got a bit upset. They figured somebody’s making big money on their eternally suffering mother, and that they deserve a cut.

For me, the most poignant scene of the book occurs when Ms. Skloot takes two of Henrietta’s children, Deborah and Zakariyya, to meet Christoph Lengauer, a researcher at Johns Hopkins. Lengauer shows them a freezer full of HeLa cells, and invites them to hold a HeLa vial, and then to inspect some HeLa cells under a microscope. Here we see how, even after extensive dealings with Ms. Skloot, there is still so little Deborah and Zakariyya actually understand. Christoph spends a half hour drawing diagrams and explaining basic cell biology. He explains DNA. Deborah is relieved. She thought she’d be cursed with immortality.  “So we don’t have the thing that made her cells grow forever? Now you tell me, after all those years!”

Christoph suggests that Henrietta’s heirs should get the money from the research. He points out that ‘when oil is found on a person’s property, it doesn’t automatically belong to them, but they do get a portion of the profits.’

I don’t think the two situations compare. When oil is extracted from a person’s property, the extraction harms the property value.  Without some compensation, the owner suffers a loss. Whereas when cancer cells are extracted from a person’s body, the loss of those cells is ultimately the patient’s gain.

Though I differ from  Christoph’s point of view, I very much admire his actions. As I see it, the Lacks children deserved…exactly what he gave them. They deserve to live in a world where they are treated with respect. They deserve as much information about their mother’s cells as they can possibly understand. But do they deserve a percentage of the profits from every HeLa experiment that went right? If so, should they reach into their pockets for the hundreds of experiments contaminated with HeLa cells that went wrong? I don’t think so.

While the book itself charmed me, the afterword scared me. Apparently, “there are a growing number of activists—ethicists, lawyers, doctors and patients—arguing cases and pushing for new regulations that would grant people the right to control their own tissues.”

Here’s my problem with that: after living over twenty years with multiple sclerosis, I can tell you that as much as I would like the right to control my own tissues, I have made the painful discovery that my tissues have a mind of their own. Without medical intervention, my T-cells would continue to attack the cells in my central nervous system, and I’d be out of luck.

Maybe these people complaining about their rights are still healthy. I have news for them. “Their own tissues” are going to betray them some day. And where’s the first place they will turn? They won’t turn to their lawyer. They will turn to their doctor.

That Which Doesn’t Kill You

December 29, 2010
Every day with relapsing/remitting MS contains a bit of suspense. I never know for sure what I’ll be up against.
Take this morning’s dog walk, for instance. For the past two weeks, my husband has been doing most of the dog walking. I’ve been fatigued; I imagine it’s because of holiday travel.

Today is my husband’s first day back at work, so this morning I decided to resume dog-walking duty. Problem was, my legs didn’t feel all that reliable. They were just a tad bit more tingly, a tad bit more wobbly, than usual. I wasn’t 100% certain they would hold up for the duration of the walk. But then again, I wasn’t 100% certain they would fail me, either. I hate to lose the opportunity to breathe fresh air and get some exercise. I hedged my bet by inviting our 14-year-old son Henry along as back up. He agreed to take the leash. This was brave. How brave? Read on.
There are a few extenuating factors I have to watch out for on winter walks. If I get too cold, my muscles tend to seize up and spasm. But here’s the rub: if I get too hot, my MS symptoms go into overdrive.
I found myself lagging behind the dog and the boy right from the start. My legs felt heavy, as if the heel of each boot contained a five pound weight. The dog had a good deal of business to attend to. I was able to stay within half a block due to their frequent stops. Both the boy and the dog kept looking back. I tried to hustle. The fastest tempo I could muster was a shuffle. Within a few blocks, my boots started to feel heavier, like they weighed twenty pounds each. I knew better than to take off my boots. I took off my hat.

I can’t afford to get a hot head. Multiple Sclerosis is an autoimmune disease in which renegade T-cells from my own immune system have attacked the insulating layer (myelin) around the nerves in my brain and spinal cord. When I overheat, my poorly insulated neural signals tend to misfire. This can lead to any number of complications.

I once lost most of the vision in my left eye during a dog walk. My vision gradually returned, but only after I’d completely freaked out…and completely cooled down. At the time, I hadn’t had an explanation for the world going grey. I thought this was the beginning of the rest of my life as a semi-blind person.

Today I know what to expect when I overheat…sort of. I can expect to get symptomatic. And I can expect the symptoms to be transient. I don’t get to pick which symptoms will arise.

My legs were getting more tingly, and more wobbly, block by block. Shortly after I decided we should turn around, my hips began to swivel madly. Then my knees began to buckle. My agency over my body was slipping away. I grabbed hold of my boy’s extended arm. Henry handed me the leash, in hopes our hundred pound lab mix would pull me forward.

No such luck. In wintry weather, the dog has learned to walk slowly, to match my pace along the slipperier sidewalks.
I pitched forward. Pitched backward. Getting home was going to be tricky.

My son said, “You shouldn’t have walked.”

“I need the exercise.”

“This isn’t exercise.” He had a point. We were inching along. “You’re only hurting yourself.”

At least I knew for sure I was reaching my full potential for the day. Which is kind of athletic, in a sick kind of way.
I thanked my son for assisting me in this adventure. But he didn’t see it as an adventure; to him it’s an ordeal. He doesn’t care if his mom has reached her full potential for the day. He just wants his mom to be safe and intact.

I try to assure him that what he’s witnessing isn’t a progression of my MS; it’s just a flare-up of symptoms from damage done long ago. There’s no way to prove that to him, though. Not until the next MRI.

I have faith my medication will prevent another full-blown relapse. Faith my family will stick by me even when I’m wobbly. And so I venture out, and trust that somehow there will always be a way for me to make it back home.

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