MS Family Dynamics

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?)

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How to Take a Fall

When I was a child, my parents would take us girls hiking in Sleeping Giant Mountain with the regularity of the devout. Weekend after weekend, without fail, we’d hike the same old wooded trails.
One afternoon, when I was maybe nine or ten, I scrambled off the trail and up a ruddy rock face. I craved a change of perspective. Why not go vertical? I liked the challenge of having to figure out where to place each hand and foot.
Did my mother call after me?
I’m certain she did.
I am just as certain I pretended I was too high up to hear her. I was higher than my Dad, and he was six foot four. That would put me pretty much on top of the world.
In my family, there was nothing more gratifying than eliciting my mother’s panicked call. The terror in her voice was always music to our ears. Typically the surest way to achieve this lofty goal was to scramble up all four levels of the “castle,” the stone tower at the summit of Sleeping Giant, and hang off the overlook as far as you dare, pretending to take in the view of far-off New Haven and maybe the distant sparkle of the Long Island Sound.
This particular rock face was at the base of the mountain, yet already I’d managed to stoke my mother’s fear of heights. Most excellent. I’d beaten my sisters to it. I half expected they’d be scrambling up after me, ostensibly to set things right.
Let them try.
It wasn’t all that easy, scaling a rock face. One false move, one careless grasp on a loose rock, and my little sibs would go tumbling down. Only I had the courage, only I had the brain power, only I had the grip…
Only…
I slipped.
Time slowed down for this humbling event, just as obstinately as Time speeds up for ice cream cones. Once I lost my grip, I didn’t bother to grab for an anchor to break my fall. I tucked in my chin, and curled up in a ball.
My highest priority was to protect my eyeglasses. By the tender age of nine or ten, my unassisted eyesight was already vague and amorphous, kind of Van Gogh Starry Nightish, but without all the detail. My eyeglasses meant everything to me. They were the essential component for both my physical survival and my complete social annihilation. This was the 1970’s. The fashion—I am using this term loosely—of the day embraced the notion of ‘bigger is better’ for eyeglass frames. This notion was wrong. Flat out wrong. But no matter how patiently the ophthalmologist explained that choosing bigger frames would result in thicker lenses, I adhered to this misguided trend. As a result, the lenses of my eyeglasses were easily half an inch thick along the edges, which meant my peripheral vision was absurdly distorted. Even with the distortion, seeing through glasses as better than seeing hardly anything at all. So no, I wasn’t about to lose those odious looking glasses. Not in this fall.
Down I tumbled, curled up tight, and tucked myself in with all of my might. I rolled over rocks, roots and mosses alike. What was a little bump…or a big bump…a little scrape…or a tear…just so long as my glasses were spared?
I was not the type of child to tumble down a rockface and let a pebble go unnoted. I must have registered every indignity allotted to me on my journey down. Imagine my surprise, then, when I finally found my feet after my fall…and discovered I had somehow lost my glasses in the process.
Now that made me sore.
My father was crowing, “Congratulations! That was perfect! You really know how to take a fall!”
My mother was cooing and pulling the leaves from my hair. I wasn’t looking for praise, or even consolation. I was looking for my glasses.
“Where are my glasses? Has anyone seen my glasses?”
My sisters sprang into action, vying for the chance to save the day. My mother plucked my glasses off a sprig of mountain laurel. I snatched them out of her hand, and immediately tried them on. There was a scratch on the right lens.
“There’s a scratch!” The lens would have to be replaced. I had failed.
My father said, “One lousy scratch. And only on your glasses.” I didn’t understand. Shouldn’t he be upset? He’d have to pay the optician. “You’re gonna do well, kid. You’ve got what it takes. The trick to getting through life is knowing how to take a fall.”
In the sixteen years since I was diagnosed with multiple sclerosis, my parents have since seen me face many a fall.
Scaring Mom just isn’t fun anymore.

I can offer my parents one consolation. They can think back to that afternoon on Sleeping Giant. Their oldest daughter knows the trick to getting through life. They can be certain I know how to take a fall.

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Princess

One of the least attractive aspects of having multiple sclerosis is that it has turned me into a bit of a princess.

When I was a little girl, I never wanted to be a princess. I didn’t think it was any luxury to be dressed by a flock of ladies-in-waiting. I haven’t reached that particular stage of princessness…yet. But it could happen. The other night when I was in pain, my husband got a bit over-solicitous, and pulled a sock over my decidedly un-Cinderella-sized foot. I said, “Let’s not make this a habit.” I thought that would stop him cold. His eyes widened in horror. Then he picked up the other sock.

Scary.

Am I a princess? I can not bear to stand in line. Now you’re going to hate me. Who doesn’t hate those princesses you see at the grocery store who hiss and flare their nostrils if the person in front of them pulls out food stamps, or, heaven forbid, roots around their pockets to furnish exact change? I promise, I’m not that kind of princess. The hissy type. The type who berates the slow moving cashier. But I tell you, a slow moving line sends me into a panic, a crisis I try my level best to keep to myself. Standing, simple standing, is an arduous task for me. The longer I stand, the more painful it gets. What starts off as a tingle in my legs swiftly escalates into something like a burn. If you’ve ever been tickled too long, you might begin to get the idea.

I know. I know. That seems kind of strange. Welcome to multiple sclerosis.

Am I a princess? I don’t clean my own house. Now you hate me. I do the light cleaning. I do the family wash. If my husband makes the dinner, as a rule I do the dishes. Unless, of course, my husband has made the dinner because I’ve had a rough day. On those rough days, I get out of the cooking and the dishwashing, while he is stuck with both. My husband picks up my slack. But he doesn’t pick up that much around the house. For that, and for the deep cleaning, we turn to M., our housekeeper. M. is extremely non-judgmental. I have never, ever, heard her trash-talk our family for our slovenly ways, like I do when I’m the one cleaning up. She would never say, as I said this morning, “A dirty thermos? In your sleeping bag? Really?” She just goes about her business of cleaning our house, and lets me go about my business of undoing her good work. M. does this work because I find it too fatiguing to drag a mop across the floors, yet in all the years she’s worked for us, she’s never once commented on how strange it is that I summon up enough energy to pop over to Y to lift weights.

What M. does is the real heavy lifting. On those weeks when M. can’t make it, and I’m the one to clean the house, I only last about 40 minutes before my legs start buckling beneath me. Add just about any commercial cleaning solvent to the equation, and I’m as dizzy and wrecked as a high altitude climber who forgot to tote the oxygen. When M. returns the following week, I’m as happy to see her as my salivating dog. I apologize for the mess I’m too gimpy to clean. Then I get in my car, and I drive off to the Y.

So, to recap: I don’t stand in lines. I don’t clean my own house. Now let’s add the most princessly feature of all…can you guess?

I don’t work.

Not to make money, anyway. Now you hate me. You work. And work is no fun. I know that. I worked once. I was working three jobs and going to grad school when I was diagnosed with multiple sclerosis. I never made very much money. I made so little, in fact, that I really resented that chunk that came out of my paycheck to go to Social Security.

These days, the only work I do is fun stuff; I write, and I help other writers write. I touch no filthy lucre. Like any princess, I have my favorite charity. All the proceeds go to the arts center down the block. If I’m too much pain, I cancel, or I postpone. No one is the wiser. No one is my boss.

I am a princess. I have to live by a separate set of rules. I don’t stand in lines, I don’t clean my own house, and I don’t work for money, just for fun. There is nothing about multiple sclerosis that is fair.

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Expiration Date

It took me years of hemming and hawing and handwringing to get around to applying for a handicapped parking decal.

Me? Handicapped? Nah.

I wasn’t handicapped. I just had… moments. Moments when my legs melted from beneath me. Moments when my husband took on the dual role of valet-parking-attendant/living-human-crutch, and had to juggle parking the wife and parking the car. A handicapped parking permit would have made those moments a lot easier. For him.

But for me? I wasn’t handicapped. Those moments were flukes. Was there some sort of Momentarily Handicapped Decal? I’d take one of them. I’d leave the real handicapped spots for those handicapped people.

Over the years, the flukes piled up. 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 and stared across a glassy parking lot of solid ice. Our car 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.

Fine.

That was a fluke. My husband couldn’t lose his wisdom teeth twice, right?

But fluke followed fluke. Too many flukes, and you’ve got yourself a trend. I applied for the decal. I wrote 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.

The day arrived when the decal arrived in the mail. My six year old son watched me pull the thing out of the envelope.

“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 really and truly 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?”

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MS Mermaid

My son requested that I tell you the story of what happened the last time we were in Hanauma Bay:

Once upon a time, on an island not so very far from the equator, Mermaid opened her sea blue eyes and saw she was in trouble.

Earlier that morning, Mermaid had grown restless as her husband, Landman, and their son, Halfland, fumbled around the coral in their rented flippers. She shot off after a brilliant green parrotfish, leaving Landman and Halfland to doggie paddle in the shallows of the bay.

Hour after hour, Mermaid frolicked with bright and beautiful fish. She witnessed many wonders. But as time went on, more and more blubbery white Surface Creatures came crashing across the coral reef. As the bay grew crowded with  Surface Creatures, Mermaid grew restless yet again. She missed Landman and Halfland. She wanted to be with them, even if that meant climbing out onto the sand.

Mermaid was as clumsy on the silver sand as Landman and Halfland were clumsy in the water. Mermaid fumbled as far as a little palm tree, and then plopped down to shelter in its meager shade.

Mermaids never nap. But on this day, Mermaid’s frolicks must have worn her out. When Mermaid awoke, she was no longer lying beneath the slender shadow of the little palm tree. The shadow had shifted.

Mermaid was no longer sheltered from the Sun. And Mermaid was no longer alone.

A group of  Shade Seekers from the Far East were noisily unfolding their straw mats along the new angle of the palm tree’s slender shadow, chatting away as if Mermaid did not exist.

Mermaid did not understand the Shade Seekers’ culture, or the Shade Seekers’ language, but she had to be grateful for their bizzare proximity, and their incomprehensible chatter. Had they not been so close, had they had not been so loud, the Shade Seekers might have not have waked her. Had Mermaid remained asleep beneath the Sun, she may have napped her way smack into oblivion.

You see, all mermaids’ powers melt away in the heat.

Mermaid looked down at her lovely legs. She knew the heat of the Sun had rendered them as useless as a mannikin’s legs.

Mermaid gazed longingly at the sparkling sea; if she could only make it back, she would be safe from the heat of the Sun.

Mermaid turned to the Shade Seekers. The Shade Seekers did not meet her sea blue eyes. You see, Shade Seekers do not believe in mermaids. These simply pretended Mermaid did not exist. And even if Mermaid were to somehow convince the Shade Seekers that she did indeed exist, she still had no common language to explain her predicament.

All the while, the Sun beat down relentlessly. If Mermaid didn’t act soon, she’d lose control of more than just her legs; her sea blue eyes would cease to see.

Mermaid was feeling desperate. Her lovely legs couldn’t take her to the water. The Shade Seekers wouldn’t take her. Mermaid decided on a course of action. Since she could not walk to the water, she would have to roll there.

I will tell you a secret about mermaids. Mermaids are like you and me. They can not abide to lose their dignity.

Mermaid imagined that the Shade Seekers would start seeing mermaids as soon as they saw one rolling in the sand. That would give those Shade Seekers something to talk about.

Just then, Mermaid heard two beloved voices over the din of the Shade Seekers’ chatter.

“Mermaid!”

“Mommy!”

Landman and Halfland were running up the beach toward their lost Mermaid. They were so happy to see Mermaid, they forgot to be cross with her for swimming away. They understood immediately that Mermaid wouldn’t be going anywhere, not without their help.

Now, this was no ordinary bay, but rather, the crater of an eroded volcano, one that had sunk so low that the sea could sneak inside. Landman proposed he carry Mermaid to shelter on the crater’s rim.

The crater’s rim was a long way up. Mermaid wanted nothing more than to return to the water, and to her natural form.

Landman loved Mermaid. Landman wanted nothing more than for Mermaid to be whole again. Instead of carrying Mermaid to the crater’s rim, he carried her back into the water, and released her alongside the battered coral reef.

As the family expected, the ocean worked its magic on Mermaid. She was soon swimming as though she had never been pinned by the heat of the Sun. Landman and Halfland were happy to see their Mermaid restored, yet the entrance to the path to crater rim remained a great distance away. Mermaid refused to be carried there, and they all three doubted she could walk.

Halfland proposed they all swim toward the entrance. But Mermaid knew swimming would not be much fun for the boy. She urged Halfland and Landman to walk there, instead.

After all that had happened, Halfland and Landman were reluctant to leave Mermaid. But Mermaid had learned her lesson. From now on, Mermaid would not be distracted, no matter how colorful the fish. She would keep her sea blue eyes on Landman and Halfman, for those two were more precious to her than all the fish in the sea.

Landman and Halfland sloshed back to the shore, and Mermaid swam along in the sea. But they were still together, all three. They proceeded in parallel toward the path to the crater rim; Landman and Halfland walking on the beach, and Mermaid swimming in the bay. Mermaid’s gaze did indeed remain fixed upon Landman and Halfland. Those two were the most soothing sight her sea blue eyes could ever see.

Not even the Shade Seekers can tell you how Landman and Halfland managed to get their Mermaid to shelter on the crater’s rim, or how Landman, Mermaid, and Halfland have managed to stay together, happily ever after. There is much about a mermaid that must remain a mystery.

Bad Brain Day

My son loped downstairs looking all mopey. “I just took a bunch of IQ tests. They all had different scores.”

I was feeling a little mopey, myself.

As it happened, I’d just run across a bunch of my MRI reports. The reports all had the same results, which meant the MS has stayed in remission.

Stable multiple sclerosis with moderate lesion load and moderate brain atrophy.

Yep. Most days, that’s my idea of good news. But maybe I was a little tired from a morning of yoga. Or maybe I was just hungry. Whatever the reason, as I sprinkled garam masala over paneer cubes, I found myself asking the forbidden question, “What would I be like without moderate brain atrophy?”

My son suggested I write this blog post. “You should fill it with misspellings and everyone will get all worried.”

Nd thn whe kraked up laffin.

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MS Family Etiquette

My son says, “Mom, you look sick.”
My husband steps in. “That’s not what you say. You say, ‘How are you feeling?'”

Note to self: “How are you feeling” means; change out of pale green bathrobe, apply concealer and lipstick.

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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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