Les Toilettes: The French Folly

Traveling and multiple sclerosis go together like chocolate syrup and sardines. So those of us with this disease appreciate the little things that make globetrotting a little easier, like easy-to-access public toilets. Which, I discovered on a recent escape to France, virtually do not exist in a country that mandates diuretics—coffee, wine, champagne—at most meals. So I’ve come up with a handy set of rules to make it easier to navigate the bladder wars and dampen (no pun intended) your panic quotient when you’ve gotta go.

• That cute café? The bathroom is down that narrow spiral staircase. And it might be an Indian-style toilet. If you are lucky you’ll have a grab bar so you can pull yourself off the ground after you’ve peed on your pant leg. And now you need to consume a beverage (more liquids!) as a thank you for using their marvelous facilities. 
• Do not assume that the largest train station in Paris with dozens of tracks and thousands of visitors daily has a plethora of public bathrooms. They have three… toilets. There is always a long line and you get to pay for the privilege.
• The vineyard-rich countryside of France is blissfully free of commercialization and such pesky things as devices that flush. Fortunately, the French love to cycle. Cyclists have to pee. They usually pee on the side of the road. Voilà!
• Toilet seats are a luxury. Seek them out. Celebrate them.
• You found a gas station? Great! Use caution when getting out of that car as that may turn on your I-gotta-go-now switch. They probably won’t have a toilet. And they’ll point down the way to facilities you now are guaranteed not to reach in time.
• Notre Dame Cathedral.12 million annual visitors. 9^th most visited tourist attraction in the world. 0 toilets. I am serious.
• There are good odds you will not make it to a bathroom at least once. It’s in the MS rules. Pack accordingly and don’t beat yourself up when you have an oopsy. Heck, you are on vacation.

Now with all these issues, there are the odd restroom finds that make travel so special (in a good way). These gems make it feel as if you’ve found the lost Toilet of the Covenant. Like the hidden handicapped bathroom at Pier 2 on the Seine outside the Eiffel Tower (staff will guide you if you ask, and tuck a piece of paper in the door jamb so others will know it’s occupied—there is no lock). Or the line-free handicapped toilets tucked into corners at the Musée d’Orsay. Or the deluxe, sparkly clean bedroom-sized stalls at the Charles de Gaulle airport. No, you can’t live there, but you’ll want to.

No matter where you go in the world, you will have to, well, go. Just don’t fret about it. You are human. And with each adventure you’ll have more stories. I mean, how many people can say they’ve peed in a French mall parking lot on a sprig of a tree planted on a traffic island? Or on the banks of the Seine in the middle of Paris in broad daylight surrounded by pedestrian bridges? Or under the disapproving eyes of gargoyles at Notre Dame de Paris? Okay, that last one was a bit unfortunate. But I’m absolutely sure I’m not alone. And neither are you.

Imitating Humpty, Mr. Humpty Dumpty

In the fall of 2009 I had what I consider my first official MS fall—almost four years to the day of my first relapse. Now I’d had falls before, but they were “planned” falls, where I knew my hosed legs weren’t going to get me far enough—the resulting teetering crash and burns were wholly expected. And the “falls” were more collapses of exhaustion than true face plants. But this one fall, it was as if a gremlin reached out and grabbed my left leg.  I clunked down in such dramatic fashion that Humpty himself would have been proud. I surveyed my splayed-out body for damage—conveniently located on the living room floor instead of, say, the parking lot of Wal-Mart—and it appeared I had escaped unscathed. Not even a rug burn from the berber carpet.

But strange, my left toenail had a white stripe on it. Huh, I thought. I wiggled my toe, no problems there. I wiggled my toenail, and it LIFTED UP LIKE THE HATCHBACK ON A SUBARU OUTBACK. Okay, problems there. I promptly “closed” my toenail and secured it with a band aid. No major damage so no biggie, right? It would have been no biggie, only for the fact that I was leaving on a dream (and long-promised) escape to Italy with my lovely wife Laura… in three days. And I didn’t know it at the time, but I was entering into an MSer’s perfect storm of a vacation: a toe injury, an undetected urinary tract infection, and a surprise fresh relapse that was not yet in full force—to, of all places, a country with more steps, more cobblestones, and more toilets lacking toilet seats than I had ever experienced. But it’s all good. Because oh boy did it give me some exciting future blog fodder!

Bottom line: Falls are going to happen with multiple sclerosis. There’s no way around it. Some of us might fall once every blue moon, others as often as a full moon (and half moon, quarter moon, sliver of a moon, new moon, ha!). Don’t let it get you down. Dust off, get up, and move on!

Originally published October 31, 2009. Edited for clarity.

Grocery Shopping with MS Meets Murphy’s Law

I’ve never liked that guy, Murphy, always showin’ up at the most inopportune of times in multiple sclerosis. Like last week, when I ventured out to grocery shop for a 10-person dinner party (one that catered to a) vegetarians and b) people allergic to onions, but that’s for another story). All seemed pretty darn smooth when I arrived at the store. I even got the chance to park next to an empty handicapped spot, which I always try to do if one is available—someone may need that extra access far more than I do. And then that dude showed up. Murphy. There was just one available scooter… and the battery was just about dead.

When I grocery shop these days I usually use one of the store’s Hoverounds. It saves the MS legs for needed work later in the afternoon and it prevents me from having to ask the staff to hunt down a chair for me if I bonk an hour into my shop. And that conversation always goes like this: “Chair? Why? I don’t think we have one.” I nod. “That’s okay, I’ll sit on the lettuce. It’s softer than the apples or potatoes.” A chair usually shows up rather quickly.

Of all days I really needed to save the legs, today was that day. I couldn’t wait and come back later—the rest of the afternoon was slated for mandatory cooking and dinner prep for the weekend. Worse, I had a big haul to get and Laura had just run out of allergy medicine at the peak of allergy season. So I came up with a plan. Using the near-dead scooter, I’d hit the pharmacist (located at the opposite end of the store from the fresh fruit and veggies) and then switch to a push cart and hustle. No prob, right? Wrong.

“Your prescription isn’t ready.” Fudge. The scooter was wheezing and I was at the wrong end of the store. So I plugged the scooter in at the pharmacy and waited. “The doctor hasn’t called us back, so we’ll page you when it’s ready.” Holy bat guano, Batman. So off I go back to the front of the store to drop off the electric slug only to get paged midway. Mother Mary Joseph Stalin. Turning around, I crept back to the pharmacy, plugged ‘er back in, and picked up the allergy meds. Could I make it back with the extra few minutes of bonus juice? Would I stall out in the middle of store, stranded? Should I cut my losses and just hit the beer aisle?

I finally made it back to the cart corral averaging 0.2 mph; I could have crawled faster. But I saved my leg gas for the main shop and I was ready to motor. And motor I did. It didn’t even bother me that they were out of cans of chicken broth—how does that happen?—and the first 48-oz box I picked up leaked broth all over me. (And for those wondering, “Dave, chicken broth has both a) chicken and b) onions,” don’t ask. The vegetarian makes an exception for broth and for some reason processed broth does not trigger the other’s onion allergy.)

So I swept down the aisles in blazing time, tossing items in the basket like Jordan raining threes. I finished, forgetting not a single item, and my legs still had ample power. Screw Murphy, I thought. I didn’t even have to pee. Oh, wait—I shouldn’t have thought that. The bathroom is on the total other end of the store. By the pharmacy. Murphy is such the a-hole.

“What are you doing back here, Mr. Bexfield?” I shooed off the smiley pharmacy staff as I focused on my destination. AND THAT DUDE WHO WAS ABOUT TO TAKE THE ONLY BATHROOM. “Dude!” He let me go first. Murphy, finally, had officially left the building.

I strolled back to the front, checked out with a gazillion Monopoly pieces (part of the store’s promotion), certain that one held the $100,000 grand prize. “It’s a million dollars, actually,” the clerk said. Double cool. And then I saw a woman my age with a family member (brother, husband?) who was in wheelchair unable to control it himself. “Are you playing Monopoly?” I asked. She was. I gave her my stack of tickets and walked out to my car. She soon followed me out… to her accessible van in that last handicapped space. Thanks, Murph, sometimes you aren’t so bad after all.

If You Know More About MS than Your Neuro…

When you first get diagnosed with multiple sclerosis (or at least when the doc seriously suspects it), there are a number of different coping mechanisms. You might try to see just how many tears you can cry before your eyeballs dehydrate and start to deflate. You might watch a marathon of Happy Days episodes just because of the show’s ironic title, but when they sing the theme song at the beginning of every half hour, you substitute Crappy for Happy (sing along with me now, Sunday-Monday Crappy Days, Tuesday-Wednesday Crappy Days, blah, blah, jeeze that’s an annoying song). You might contemplate death by chocolate … or ice cream … or toffee squares, only to discover that you only get fat, an unpleasant bloated feeling, and a bit of gas. (BTW, overeating, especially if your comfort food of choice is Activia yogurt, is not recommended.)

But, since you found this post, odds are high that you have immersed yourself in Internet research on the disease, and you now probably know more about MS and its treatments than your run-of-the-mill neurologist. If that’s you, take a breath, back away from the computer slowly, and start getting back to living your life. Don’t worry; I’ll keep you updated on any excitement that comes along. You don’t need to spend 8 hours a day (or more) trying to predict your unpredictable future. Been there, done that. So get out and have some fun!

Originally published April 16, 2009.

Don’t Set the Puppy on Fire

We’ve all been there—getting off the couch to wander into the kitchen to grab that thing. Or do that thing. Or find that thing. Or put away that thing. Wait, now why the hell did I go into the kitchen again? Don’t worry, that’s probably not your MS talking, that’s just life. Now when you get back to the couch and suddenly remember why you went into the kitchen in the first place, then go back to the kitchen focused on completing your once wayward mission… and you forget again. That might be your multiple sclerosis.

Cognitive issues with MS are maddening. I know you’re smart. You know you’re smart. But this disease doesn’t care if you won the science fair in 6^th grade or aced your SATs or have a PhD in economics along with an MBA from Wharton. As many as two thirds of people with MS have some level of cognitive impairment and it often goes beyond forgetting a word or the title of a movie you saw last month. Attention spans can wane, concentrating can be challenging—even tiring. And multitasking may be virtually impossible, especially with even minor distractions. Worse, these issues tend to creep up in MS like receding hairlines, high school reunions, and sequels to Pirates of the Caribbean. It’s not your fault. It’s Johnny Depp’s fault and, well, it’s the progressive nature of this disease.

When your brain gets fuzzy, you can laugh. Or cry. Or heck, do both. You put the cereal in the fridge? Laugh. Milk in the pantry? Cry (it was a whole gallon!). Beer in the freezer? Laugh… then cry after it explodes. But better still, be more deliberate, write yourself reminders, set timers with Post-Its, and don’t beat yourself up when you do something silly. As a story I recently received from a fellow active MSer succinctly illustrates, sometimes you just have to go with the flow….

“Tonight I had such an adventure cooking a very simple meal of spaghetti—Ragu sauce and ground beef with pre-mixed spaghetti seasoning. First I set a paper towel on fire. Then I melted a spoon. Then I forgot to heat up the sauce (thought something was missing but didn't know what), so I tried to heat it fast on high without a lid and it splattered all over. Then I dropped part my meal (a small part) on the floor making a big spaghetti sauce stain on the carpet. But the paper towel part had to be the best part. Instead of trying to smother the flames with a pot or something (I couldn't think what I should do) I carried it over to the sink making the flames bigger. Fortunately I didn't burn my fingers (close), or set the puppy [at left] or the house on fire or anything else on fire.”

To counter cognitive issues, it helps to realize that overdoing it (walking the dog before dinner) or getting overheated (cooking in a warm kitchen) or being over stimulated (doing several tasks quickly) can amp up your cog fog. The more you understand your triggers, the better you can cope with brain farts. And if you still have a mental poofer, do what I do: blame it on the dog! Just don’t set the puppy aflame or you’ll totally blow your alibi.

Pushing the MS limits in Morocco

Traveling with multiple sclerosis can often be tricky. Traveling overseas, even trickier. But because I love to travel so much, I usually say pshaw to my disease and dive into the experience with reckless abandon. In late 2008 I voyaged to Morocco, an enchanting and diverse country in northern Africa. I had to worry about my meds freezing while camping the Sahara desert (Christmas night got down to 36 degrees!), getting run over by donkeys along the impossibly narrow stone paths that weave through the ancient medina of Fez, and fending off with my cane snake charmers and monkey wranglers in the plaza of Marrakesh. Nothing though, challenged my MS quite like a traditional Moroccan hammam.

A hammam is a public bath with steaming hot rooms, slick tile floors, and little else. No benches, no railings, no chairs—absolutely nothing to grab onto. It was just me, my bare feet, wet tile, near sauna-like temperatures, and one very important new friend. Fortunately my guide knew about my issues and I was assigned a strapping and impressively chiseled young Moroccan man to lead me through the hammam. Lowering me to the ground carefully in the hottest room, my new companion proceeded to scrub me down from toes to ears while I lay on the warm tile floor, protected only by a bathing suit. And when he scrubbed, I mean scrubbed, using everything from coarse soap to full-on loofahing (is that a word?). I was so clean when I stood up (okay, technically I was lifted up with one swift tug) that it didn’t bother me that afterward I couldn’t see too well and that my balance was even sketchier.

Now I’m not encouraging everyone to rush out and do something that amps up your MS symptoms. I’m just saying, don’t necessarily avoid those experiences, either. In minutes my vision came back and I was walking as normally as I could those days … and I got a memory that will be with me until my last breath.

Originally published January 30, 2009. Edited for clarity. 

Yo, Pal, Gotta Permit???

On a recent late fall trip to Wisconsin, my wife and I had grand plans to go out to dinner to a nice restaurant near the Madison state capitol. As we were circling the capitol—parking is notoriously challenging near the statehouse—a handicapped parking space opened up just steps away from the restaurant’s front door (and a scarce few minutes away from our reservation time). What a perfect start to what was surely going to be a memorable evening.

That is, until the car in front of us suddenly veered over into the precious spot. And a college-aged driver bounded out of the car with nothing hung on his rearview mirror. Really? It all happened so fast I didn’t even realize that I had rolled down my window to holler at the guy. 

“Yo, pal, you gotta permit?” I yelled out of the car window into the frosty night, clearly interrupting his Chariots of Fire reenactment. He stopped mid sprint, already 20 yards from his vehicle.

“Uh, no, but I was only running in for a just sec…” His voice trailed off as if waiting for approval. Waiting for me to say, “No problem dude, we’ll idle next to your car for 10 minutes and keep an eye out for any cops. If it looks like you are going to get busted, I’ll throw my placard on your windshield and mingle around your car until you return. Take your time!”

And then my brain said something else. “I would love to run anywhere for ‘just a second.’ Think about that. You don’t ever want my disease. You don’t ever want to need that handicapped placard. You don’t ever want to be the guy who misses an important appointment (or a fun date) because a total inconsiderate lazy bastard like you took the parking spot he needed. Karma is a bitch, my friend. Move your vehicle or I’ll get it moved for you. Trust me—don’t make my gimpy ass get out of my car to beat you silly with my forearm crutches.”

Fortunately my vocal cords didn’t listen to my brain. They just said, “Sorry.” I shrugged my shoulders and held up my blue placard. He moved. We parked. And my wife and I had a magical evening, complete with the best mac-n-cheese imaginable … without me even having to open up a big ole can of whup-ass.