No Good Deed

When I’m driving out and about on my own, I’ll try my best to avoid using a handicapped parking space if there is another (non-handicapped) one reasonably close by. I figure it’s only a little farther to walk and there may be someone else who might need it more, either for its proximity or for its extra entry/egress space. (Admittedly that someone else also could be one who “borrowed” his grandmother’s placard to “just run to the store” and park in an accessible space “just for a sec” and seemingly inconvenience no one since the spot was “just sitting there empty,” but let’s not go there.)

Since I use forearm crutches or a cane for my multiple sclerosis, a little extra room to get in and out of the car is handy but certainly not required—nowhere near the space needed if I was using a wheelchair or walker. So when I went to the gym the other day, I did my civic duty and parked in a space used by the normals. I just forgot to count on one thing: that humankind cannot always be counted on, which I discovered the moment I walked out of the gym after my workout, getting ready to drive home.

Unbelievably, someone had parked their car thisclose to my car. It was amusingly close, almost as if it had to have been planned. Twiggy wouldn’t have fit into my driver’s side door much less a midday shadow. Naturally I looked around for the source of this most incredible parking job. Was I on an episode of Punked? “Ashton, come on out!” Nope. Perhaps someone was videotaping to make this into a YouTube meme complete with an autotuned song of me saying “You have GOT to be kidding me!” (“Kidding me” repeating in the background, with a fade, I can hear it now). But there was not one kid with a camera within shouting distance. Ah, bugger.

Deflated at my Internet fame that was not to be, I recruited a kind staffer to put out an announcement on the gym loudspeaker. Alas, it didn’t start the way I would have started it (“Would the a-hole with license plate…”) but it was apparently effective. Shortly thereafter an older woman sheepishly ran out and moved her car, half apologizing and half being clearly annoyed that I didn’t have the dexterity to climb into the passenger side and hop over the center console. Sigh, the nerve of me.

“At least you don’t have cancer”

People say lots of silly things when they hear you have multiple sclerosis. “It could be worse… you could have Lou Gehrig’s disease.” Um, okay, I suppose MS usually doesn’t quite rank up there with ALS in terms of nasty neurological diseases. Wow, I feel so lucky. Maybe today I should play the lottery, too. “I know someone who has MS and she just climbed the Seven Summits.” Her name is Wendy Booker, she’s not your normal MSer, and I’m pretty sure I’m not seeing the summit of Everest unless it’s in an IMAX theater. (Okay, technically I did see the summit… from an airplane flying from Bangladesh to Bhutan a few years ago, but seriously.) “I have a couple friends with MS, Stacey and Madison. And Madison is doing great!” I know this may come as a shock, but even with MS I still have the powers of deductive reasoning. What the hell happened to Stacey? Wait, don’t tell me. “My aunt had MS… she died.” Oh, my favorite. I know someone who had MS. Thanks for sharing.

People mean well, they do (and I’m sure most are clueless as to what to say), but there has always been one comment that, at least until recently, had grated on me more than most. “At least you don’t have cancer.” When I was diagnosed I would have disagreed with that statement, indeed argued. Unlike with MS, with cancer you have a chance to beat it. I have a few friends my age who have beaten it, even from the depths of Stage IV, and are living pretty darn normal lives. But I also know those who have lost that fight far too young. It’s devastating. Permanent. Those individuals almost certainly would have chosen our fate. Trust me, you don’t want cancer. At least with multiple sclerosis, there is ongoing cutting-edge research that could change the face of this disease. And unlike cancer sufferers, time is on our side. One day we’ll beat this. Yeah, I said it. We’ll beat this. Until then, when I tell people I have MS, I personally prefer hearing the simple “That sucks, sorry.” Yes, it does. For now, that is.

Originally posted November 30, 2010.

 

Rewriting Your MS History

If you could go back in time and change whether or not you got multiple sclerosis, would you? I imagine if I asked this to a crowd of those with this disease, a riot of “duhs” would rain down. Who in their right mind would want MS? That person must have a brain smaller than a walnut. Clearly a cashew-sized brain or one not quite the girth of a beer nut. (Incidentally, a beer nut technically is neither made of beer nor nuts—peanuts are legumes—and is an outrageous bit of misleading advertising, especially to a teenager looking to catch a legal and cheap protein-laden buzz.) But the answer, as you’ll read, isn’t so clear cut.

Scientists are not sure how multiple sclerosis manifests itself, but there are clues, like where you lived in your early to mid teens. Those residing in latitudes farther away from the equator are significantly more likely to get diagnosed with MS than those living closer. Is it because of less sun exposure, less Vitamin D? Perhaps. How would your life be different if your family was uprooted and forced to move to a sunnier, warmer location? For some of us, those were the years where our strongest lifelong friendships were forged. There would be no snow forts to defend, or cold Halloween nights to bemoan your licorice haul, or basement slumber parties in the dead of winter where the friend wearing footy PJs was the envy of all. Would you trade away all of those friendships and all of those memories? Maybe.

Researchers also speculate that the Epstein-Barr virus could be a contributing culprit. Like many others with MS, I got EBV/mono when I was in high school. (And from a girlfriend, no less, who I wasn’t that fond of to begin with, sigh.) So maybe my rewritten past would mean a mono-free senior year. Brilliant! I wouldn’t have missed a month of school, my grades wouldn’t have nose dived, and I wouldn’t have had to settle on my third-choice college. But I also wouldn’t have gotten that job at The Washington Times, I wouldn’t have had the afternoons off to wander into a random greeting card store… and I wouldn’t have met my wife. Give me MS a million times over; I wouldn’t want to revise those parts. Not to mention I obviously wouldn’t have started ActiveMSers … and then where would you go to find nonsensical rants about beer nuts?

It’s funny how life works out. And you know I don’t mean ha-ha-milk-out-the-nose funny (or for those of you on a dairy-free diet, soy-milk-out-the-nose funny). We can’t change our past, which is probably just as well. But our future? We can still mold that. I just wish I was a touch better with a potter’s wheel.

Oh, Snap! Broken Leg a “Patient” Reminder

The last week of May in 2010 was a popular seven days for breaking your leg. Professional race car driver Mike Conway broke his leg (and his back) in a spectacular crash at the Indy 500. Pro baseball player Kendry Morales of the Angels broke his leg after hitting a game-winning grand slam home run. Amidst the celebration at home plate, he jumped up and then stepped wrong and then, well, snap. So when I broke my leg in a kitchen fall nearly three years ago—in non-eye-popping, non-dramatic fashion—I knew I wasn’t alone. But I also knew… I was an idiot.

When multiple sclerosis tries to pry away some of our abilities, it’s only natural to hold on tighter. When the disease successfully robs us, even temporarily in a relapse, the push to regain what was lost can feel quest-like. The problem with quests? They take time. Heck, Odysseus, cursed by the gods, was gone for 10 years battling Cyclops and such before returning to Troy. For poor Frodo, it took three whole movies to get and then destroy that damn ring. Sir Lancelot and the Holy Grail he was looking for? Well, he’s still looking. Point is, you can’t really hurry a quest. Patience—methodical patience—needs to be embraced to get where you want to go. Don’t dwell on what you could do; focus on what you can do. And for the love of god, don’t try to do what you could do but currently can’t do (or shouldn’t do, at least safely). You might just break a leg.*

*Ah, it was only the fibula, the smallest bone in the leg. I didn’t even need a cast and it healed up completely in 6 weeks. I promptly got right back to questing!

Originally published June 4, 2010. Edited for clarity.

Life of Pee: Going to the Movies with MS

From the title alone you know where this is going and you think you know exactly what I am going to talk about. But you might not predict my latest adventure to the movie theater when I, like young Pi, was desperate for a lifeboat. And I mean this literally. Huh? Why the hell would anyone need a lifeboat in a movie theater? A real, honest-to-god lifeboat (sans tiger)? Allow me to explain.

Going to movies used to be so easy. Park a few football fields away, jog to the ticket line to make sure you beat the lollygaggers, pick up a soda so large you could swim laps in the carbonated sugar water, and then make a beeline to the perfect seat—eight rows up, dead center. Oh, life before multiple sclerosis.

So the other day, when seeing appropriately Life of Pi, I decided to start tabulating just how trying it can be to watch a movie these days at a large Cineplex, starting with the parking lot. I first calculated that the handicapped parking spaces were nearly a quarter mile from our actual movie theater, conveniently located on the far, far end of the 24-theater complex. Automatically I was guaranteed to trudge a half mile with my forearm crutches to see a flick.

Next, I skipped the soda—extra liquid and movies without a pause button are a poor combination if you have MS. As for grabbing a seat, these days I avoid too many stairs (trying to navigate lots of stairs in the dark is a major MS violation) and if the theater is crowded, that seat is usually on the edge since crawling over folks can be a challenge. But today I went up a few stairs and staked out the middle. I mean, how busy could a movie get that had been out for months? I am such the gambler. And a few minutes later I followed the cardinal rule of having this disease: pee before the movie starts.

All was going swimmingly (pun intended) until I entered the men’s restroom. These days I’m a sit-down kind of guy and two of the three stalls were occupied, including the handicapped one. No biggie, except that the one unoccupied toilet hadn’t been flushed in the last century. It was a swirl of faded fall colors—yellows like the fallen leaves of aspens and browns like the muddy trail after a fresh, chilly rain. Uh, you get the picture. I took it upon myself to be the hero that day. To do what few clearly had had the courage to do before. I flushed that toilet. (Granted, from a good distance using a forearm crutch—I mean it was pretty nasty.)

For reasons unknown, there is exactly one men’s bathroom on this wing. The nearest other bathroom is a quarter mile away roundtrip, something I wanted to avoid since the movie was going to start in 10 minutes. But I realized pretty quickly that such a trip was going to be unavoidable as the murky festival of fall lurking in the toilet bowl started cascading over the rim. And kept cascading. Holy crap, literally. The bathroom was flooding! The two poor souls in the neighboring stalls immediately propped up their legs, struggling to keep their feet aloft. They were trapped without a lifeboat. I apologized (“really sorry guys”) and ran, as fast as one can with forearm crutches, for help—and the other bathroom (after all I did still have to pee).

When I finally made it back to the theater, the previews had started. And the movie theater was packed, my wife bravely fending off potential seat suitors for the last 20 minutes. Now my path was as murky as that toilet water—up stairs and past the legs of a half dozen strangers who were most definitely not prepared for a Dave lap dance. I figured they would probably be poor tippers anyway, so I delicately gimped my way to my seat, sat down, and thought, Oh no-no-no-no, do I have to pee again? Thank goodness it was a false alarm. Ah, my Life of Pee, it’s a guaranteed Oscar contender every time I go to the movies.

The BEST Place to Live (If You Have MS)

I got a question the other day about where would be the best place to relocate to if you have multiple sclerosis. So I put on my thinkin’ cap—and contrary to what my sisters say, it is not tall and pointy—and started narrowing down options. First, obviously, you’ll want to nix anywhere that’s both hot and humid, the MS double sledgehammer (or in WWE parlance, the flying forearm smash combined with the spinning headlock elbow drop), so let’s avoid that. Actually, let’s also include on the no-go list areas that just get plain hot. I mean, hot is still hot. (Sorry Qatar.) So how about the mountains? Um, too snowy and icy. Seriously, if you have any walking issues, snow on the ground will make going anywhere outside a bit like prepping to tackle K2. And let’s not even talk about all the hot tub parties you’d likely have to take a pass on, as hot tubs are the testicular claw of illegal wrestling moves for many of us. Now I guess that means we’ll have to lop off any place in the world where it snows. Ah then, what about an area that is cool but not snowy, like the Pacific Northwest or Scotland? No, no, that won’t work. I probably don’t have to remind you that MSers need more Vitamin D. Plus depression is a big problem with MS and days of rain can enhance those bummed out feelings. Think getting pinned by a split-legged corkscrew moonsault. Yeah, I know, ugh. I hate when I get moonsaulted. Hmm.

Aha! Maybe a sunny area along the coast that is dry. It can’t get too hot by the ocean, can it? Like 113 degrees in Los Angeles last year or 115 degrees in Melbourne, Australia, the year before. Oy vey. And besides, you need to have a fat wallet to get a pad in those locations, something most of us don’t have. Oh, oh, I think I’ve got it. A deserted island with the ideal temperature year round and cool ocean breezes and the perfect amount of sun! Yes! Wait, no. You’d have no access to medical care or Cheetos, two non-starters in my book. So does that mean there is not an MS utopia we should all move to? Honestly, you are probably already there.

The best area to live—by far—is where you have the strongest social network of family and friends. Having folks you can count on to lend a hand when you hit a rough patch—physically or mentally—will help you get up faster from the mat, even after an El Kabong. (Note: according to Wikipedia, El Kabong, although it sounds a lot like a nasty relapse, “simply involves breaking a guitar over an opponent’s head. The name is a reference to Quick Draw McGraw who would say this phrase prior to hitting someone with a guitar.” Come to think of it, that sounds exactly like a relapse, so it turns out I’ve been El Kabonged more than a few times!)

Originally published April 29th, 2011.

Conquering MS’s Mountains and Molehills

“Let’s go the top.” I was feeling confident. “The top top.” After all, I had snowboarded on my own two feet just last weekend. No sit-ski. No tethering with worried instructors trying to keep me from hitting a tree. Just me and my snowboard and a pair of outriggers. And I totally ripped up the slopes. Well, technically “slope” (singular), and more specifically, the bottom third of the bunny hill, which is noted for having a pitch imperceptible to the naked eye. But still. I mean, the last time I had snowboarded was in the spring of 2009 on champagne snow, carving effortless turns on black diamond steeps. I was sure after last weekend that it was all coming back to me. I just needed a little vertical.

“Dave, do you mean the top of the bunny slope?” My adaptive snowboard instructor, Nick, wasn’t so confident. His skeptical radar went off and an eyebrow raised. So I pleaded. He listened patiently. I pleaded some more. And then a wee bit more. He finally relented. In minutes I was riding the lift again with my wife, the only thing keeping me from smothering her with excited kisses was a terrified Nick sitting between us. Still, all was right in the world. And then we reached the top.

I could remember the meandering blue diamond run with my eyes closed. Start left, drop down, hit the cat with some speed, scream under the lift popping turns left and right. There was just one problem—I opened my eyes. And before me was a run so steep that I might as well have just been dropped off onto the summit of an Alaskan mountain with a Warren Miller film crew about to document my epic descent. Four years can do a hell of a lot to your memory.

The run started as I feared. Plunk. And the plunks kept on coming. Start, plunk. Turn, plunk. Hey, check out that other skier, plunk. Don’t film me honey, plunk. My lesson was scheduled to be two hours long. At this rate, we’d be lucky to be down before sunset. Nick informed me it was time for Plan B. Brilliant! I would feign injury (flash migraine, unrelenting Charlie horse, I could come up with a bunch) and I’d get ferried down in the bucket by ski patrol in time for dinner.

“Um, no,” said Nick. “I am going to hold onto you and we are going to dance together on our snowboards all the way down.”

Jesus. But Nick wasn’t going to let me down, nor let me continue to punish myself on slopes I clearly wasn’t yet ready for. When we got down to the bunny hill, with minutes to spare in my lesson, he let me go off again on my own, and I pulled a few turns before one more gnarly fall. As I stared into the sky, cataloguing my limbs (still there), I thought about the incredible day I just had. I was snowboarding, dammit!

Now one could chalk this little victory up to my dogged determination or overwhelming willpower (or, let’s be honest, to Nick). But you’d be giving me far too much credit. Honestly, I believe we all have the power to conjure those resources when we really want to (well, except for the power of summoning Nick … and I imagine he’s now screening his calls). Heck, I found an MS snowboarding video on YouTube that features a woman who also had been off her board for four years—and she was killing it with far more panache than I.

There will always be mountains with multiple sclerosis. And, fortunately, molehills. You might not conquer them all, but you’ll never ever reach a summit if you never ever try.