The Buzz of Hope

Sometimes you can feel the buzz of hope, that overwhelming sense that life is going to get better, that the future is brighter than the sun itself. I’ve felt it before, in 1993, when my wife and I visited South Africa and unknowingly witnessed the final breaths of Apartheid.

It would have been easy to cocoon in the picturesque harbor of Cape Town and watch the daily migration of clouds lift over Table Mountain. But our experience there unfolded in unexpected ways as travel often does. A visit to the vast Khayelitsha township—300,000 living in makeshift ramshackle homes—as part of Operation Hunger. A friendly chat with a black South African followed by an equally friendly handshake—it was his first conversation with a white person. Even a chance meeting with archbishop Desmond Tutu, recipient of the Nobel Peace Prize, on a day when sickness left little opportunity for exploration.
And through it all there was that buzzing. That buzzing. You would have felt it, too. It was inescapable. Barely a year after our visit, Nelson Mandela would be elected president, Apartheid would be over, and the country and its people would be changed forever for the better.
With the passing of Mr. Mandela, I am reminded of that overpowering feeling of hope. And lately I’ve been feeling that same buzzing. Now hold your horses, naysayers might say. It’s just the paresthesia from my multiple sclerosis or that L’Hermittes zap that comes from tilting your head down. Perhaps it’s a little cog fog delirium brought on by this disease. But they would be wrong. There is no doubt that the buzz is there. A buzz in the MS research community that a breakthrough is on the horizon. Maybe not this year or next. It hasn’t reached the crescendo I felt in Cape Town, but it’s building. It’s definitely building. Do you feel it?


Managing MS Endurance

This past weekend while hiking in Sedona, I walked more in a single day than I had since 2009—2.9 miles, over 6,200 gimpy steps. Of course I realize this might not sound like much, especially if you do the math. I mean, it would take me nine full record-setting days to accomplish a single marathon, which apparently any remotely athletic Kenyan can run in under three hours. But with multiple sclerosis doing a number on my legs, it’s cause for a minor celebration, like a Snoopy happy dance (sans dance).
Even though these days I'm able to walk for up to 75 minutes straight with my forearm crutches, my legs afterward turn into floppy rubber chickens—the kind you’d see in an old comedy skit. These two appendages that presumably make me a biped are beyond hosed for the rest of the day. The type of hosing that makes you debate whether or not you should have a beer post epic hike. Yes, a beer would be tasty. Yes, a beer would be frosty cold and a just reward. And yes, a beer would make you eventually have to pee, necessitating you to get off the darn couch and walk to the bathroom. On rubber chicken legs. Honestly, at those times dehydration never sounded so good.
After hiking to exhaustion a few times, I figured I had two options if I wanted to maintain healthy levels of hydration and still enjoy cerveza. One, relocate the hall bath so that it was within arm’s length of the couch or two, find a way to avoid rubber chicken legs. With my wife Laura nixing option one in the clearest of terms (or any variation of option one, aka empty Gatorade bottle), I was left with managing my endurance more strategically.
So to prevent blowing up my thighs just to prove, ostensibly to myself, that I can still motor for an hour at a time (Oh, Dave, you are so strong and manly even with your disease), I swallowed that ego deflation pill and figured out how to dole out my energy output: Force myself to take regular breaks.
Now when I hike, my wife/Sherpa unfolds a small camping stool every 15 minutes and I take a 3-5 minute break. Even if I’m feeling fresh. Even if there is a great vista point a few minutes up the trail. Even if there is a hiker doling out free microbrewed beer a switchback ahead. (Thankfully that particular dilemma has never materialized.) These regular, scheduled breaks help to keep the legs from bonking and to avoid the inevitable implosion at the end of a long (for me) hike.
So how did I manage the record 2.9 miles that day? Deliberately and patiently. I hiked a little over a mile in the morning (3300 steps), and then another mile in the late afternoon around sunset—both hikes in cooler weather as I avoided the midday heat. In between I managed to add nearly another mile strolling around seeking food, shelter, and toilets. Again, no marathon sessions, just steady plodding.
With this disease, we all desperately want to be the hare, to prove to ourselves we aren’t that disabled, we aren’t that restricted by our multiple sclerosis. But as Aesop’s fable dutifully preaches, it’s often the tortoise that enjoys the spoils … and gets to celebrate with a happy dance, albeit a slow one.


Advantages of MS #832: Coyote Safety

As my wife and I were about to start a fall hike in the Rio Grande bosque, a beautiful forested ribbon of gold every October, we took pause at a posted sign at the trailhead. The warning was ominous. “Coyotes live here!” The exclamation points were numerous. “Be aware!” And the advice was a complete and total no-brainer for someone with walking issues due to multiple sclerosis. “Do not run from a coyote. Back away slowly.”

Because of my disease and my ability to run as fast as Usain Bolt can crawl with a bum knee, I have the unique opportunity to follow coyote safety guidelines others might ignore. Be a roadrunner and skedaddle at the site of Wile E.? Not me. I would back away slowly (emphasis on slowly), taking full advantage of underwear that absorbs moisture. And since I use forearm crutches, I have a built-in defense system. If a curious coyote dared to approach, I’d beat ‘em back. I’d protect all in my party. I’d be the hero.

“After that first panicked swing, you’d lose your balance, teeter over, and hurt yourself.” Laura had a good point. I had a much better chance of being an afternoon snack—albeit a disease-riddled snack—than being a savior. Admittedly I would have to rely on her to use one of my forearm crutches as a club to fend off that pack of ravenous, mangy coyotes. But it would be my crutch, because of my MS, that ultimately would save the day.

So see, once again MS comes to the rescue. It’s easy to forget all of the good things that can come with having this disease. (Literally, because of cognitive issues, many of us tend to forget things, but let’s not go there right now.) So get out and hike. And protect the normals from coyotes. Beep! Beep!

Gettin’ that Blue Placard

In the fall of 2009, it arrived in the mail. That unisex white dude in a wheelchair, laminated on blue, with a perfectly cut hook for your rearview mirror. When filling out the application for the handicapped placard I felt so guilty. Was I lying? New Mexico says to get such a placard, I had certify that I couldn’t walk 100 feet without stopping to rest. Well, I live on a postage stamp—not even 1/10 of an acre—and the distance from my driveway to my bedroom is farther. Technically I could make it 33 meters without stopping at the couch—using my walker I don’t need to pause. Or I had to certify that I couldn’t walk “without the use of a brace, cane or crutch or without assistance from another person, a prosthetic device, a wheelchair or other assistive device.” They didn’t specify “safely”—technically I could drunken sailor myself around without aids for short distances. And finally, that I was “so severely limited in the ability to walk due to an arthritic, neurologic or orthopedic condition that the person cannot ascend or descend more than 10 stair steps.” Given a railing and time, I could make it up a flight. Heck, I certainly could make it down (again, nothing in the language about “safely”).

So when I went to wield my new parking powers for the very first time, I did so sheepishly. Until I discovered all 48 of the handicapped spots at the mega-super-cina-plex were taken. And the entire time I was there, I saw not one person using a cane or wheelchair. Curious. The closest handicap parking spots were 500 feet from the entrance (not to mention, to get from the box office to your seat had to be another 500 feet). Which means a) the system is being grossly abused, b) there are a ton of people with cardiac and lung conditions (the only other medical conditions stated on the application), or c) the eligibility criteria is flawed. In truth, all three are probably correct. Many of my fellow MSers would not qualify under the above restrictions, but without handicap parking access, that extra 500 feet today might mean a day in bed tomorrow just to recover. So put aside that guilt, save your body, live your life, and get that placard. I did.
Originally published October 27th, 2010. Edited for clarity.


Coping with Stress, MS Style

"Honey, don’t panic, but at 50 mph I broadsided an SUV that illegally turned in front of me, the car is totaled, and although I think I’m okay, I might have to go to the hospital.” My wife Laura was blunt. “Do you think you can pick me up?” She was also, apparently, delusional.

See, I start having trouble walking just as soon as I start stressing about getting to a restroom on time. Stress, even the anxiety generated by watching a horror flick, amplifies symptoms of my multiple sclerosis. I’m always trapped in my seat until the last of the credits scroll to give the nerves time to chill out.

Perhaps Laura had forgotten about last year when I needed to drive her to the ER. When it comes to pressure situations, I’ll try to do whatever it takes. But I was so freaked out, I couldn’t walk, much less drive. So she drove herself with me in gimpy tow. When we got to the hospital, the attendants rushed right for the person most in need of aid: yours truly. It was embarrassing to explain that I was totally fine and it was my caregiver who needed treatment. Heck, Laura could’ve lost an arm and had a roofing nail sticking out of her forehead and they still would have thought I was more injured. Sheesh.

As for the car accident, the car was indeed totaled—it gave up its life to save Laura’s. And to the surprise of EMTs on the scene (look at that photo!), Laura walked away with just a few bruises and a seatbelt rash. And how did she get home that night? She quickly realized I was essentially useless after inadvertently giving me a brand new temporary pair of rubber legs, and she asked me to call her dad for a pick-up. Now that was right up my alley… dialing a phone from a seated position.


To Go, or Not to Go, That is the Question

Oh, my dear Hamlet, you never had to make the difficult decision of whether or not to go on holiday because your multiple sclerosis was acting up. When I was getting diagnosed in the fall of 2006, I promised my wife Laura that I would take her to the one country that we both had at the top of our wish lists, and a country that had so far eluded us on our world travels: Italy. But then other more intense adventures intervened because of my diagnosis: climbing Mayan ruins in Guatemala, snowboarding the Canadian Rockies, camping in the Sahara, glacier trekking in New Zealand, elephant riding in Thailand, and hiking in the Himalayas of Bhutan. Designs to go to Italy had quietly simmered in our imagination until the spring of 2009 when we began, finally, to plan in earnest.

Ah, but multiple sclerosis can be like a huge pimple--the one that magically appears on a forehead right before prom, screaming for attention at the most inopportune time. Days before our fall 2009 departure I had a good stumble and I could sense my legs were going to continue not cooperating. They’d been in a funk for months and it was only getting worse. The night before our transatlantic flight, our bags standing at attention by the front door, I wondered aloud to Laura if we should postpone our dream vacation. We had travel insurance; we could cancel for any reason. If we went, it would be hard. I’d need lots of help, and she’d need lots of patience. But if we did not go, it could be a decision that we’d regret for a lifetime. Amid salty tears, we decided that MS was just too unpredictable and that, yes, Italy couldn’t wait. No regrets. It was a smart decision. Click here to read how we seized the day.

Originally published December 22nd, 2009, edited for clarity.

MS Torture Chambers

I don’t actively seek out MS torture chambers when I travel. Honest. They do, however, seem to find me. Like that sweltering hammam in Morocco that made me see cross-eyed and vanquished my legs. Or that cave in South Dakota where a misplaced fatigued step could have had me leading off the local newscast (“Stay tuned, as a stubborn gentlemen with multiple sclerosis attempts to win this years’ Darwin Award”). Or that misguided full-bladder tour of Notre Dame, apparently the most popular tourist site in the world without a bathroom closer than a half mile away. Oh yes, I’ve got a knack for putting myself into distressing situations that inevitably challenge me with this disease.
But strolling around an art museum?
No, I’m not talking about when I was literally stepped and tripped over by a mob of tourists trying to photograph of piece of art at Russia’s famed Hermitage museum. Granted it was a da Vinci. And when you are in a wheelchair it is disconcerting to have people straddle your legs, their rear ends inches from your face, in order to eke out a slightly better angle to take what will no doubt be a crummy photograph of a brilliant painting. But no, not that. It was in a single dark room in the basement of Hamburg’s Kunsthalle in the Gallery of Contemporary Art.

I’ve never been able to completely explain to others what it feels like to experience that sort of sensory overload that can come with having this disease. When loud get-togethers or overcrowded restaurants or rowdy sporting events cease to become enjoyable and just overwhelm to the point where all you want to do is escape. Until I saw Bruce Nauman's video installation Anthro/Socio (Rinde Spinning).
Three floor-to-ceiling projection screens and six monitors show close-up images of a bald man’s head dizzily spinning around—right-side up, upside down—as he loudly demands in an unbroken, relentless loop: “Feed me / Eat me / Anthropology”, “Help me / Hurt me / Sociology” and “Feed me / Help me / Eat me / Hurt me”. It’s assaulting, it’s disturbing, it’s never ending. Focusing in all the cacophony as the giant heads rotate all around you, one even projecting on your chest and shining into your eyes, is all but impossible. That is what it is like when your MS brain gets bombarded to the point of overload. It’s all those things that make you want to run out of the room, to escape. Anything to give your brain a moment of relief.
So the next time someone labels you as a party pooper or unsocial, try this little experiment. Round up a half-dozen laptops and place them inches from the accuser’s face. Then play them this video. On repeat. Loudly. For an hour. My guess is that you’ll get a sincere and sheepish (“I didn’t understand”) apology in short time.


MRI, MRI, How Many Brain Lesions Have I in All?

When it comes to magnetic resonance imaging (MRI), I have far more experience than a geezing quarterback or aging pitcher. I’ve been in open MRIs, closed MRIs, even portable MRIs on trailers. I’ve had short MRIs (20 minutes), long MRIs (50 minutes), and hella-long MRIs (100+ minutes). I’ve enjoyed in my Tubes O’ Fun silence, music, and even movies (it’s hard not to laugh during Napoleon Dynamite when he talks of nunchuck skills). All so docs can get a better idea of disease activity. But do you want to see the results?

On the surface this may seem like a silly question. Why of course you’d like to know how many multiple sclerosis lesions you have in your noggin’. You want to be on top of your disease, don’t you? Maybe. But maybe not. Since my first positive brain MRI, which showed two small lesions, I made the decision to remain in the dark (pardon the MRIesque pun). I’d argue—and so would my neurologist, a ridiculously bright man who actually wrote the book on MRIs (well, one of them, anyways)—that your best course of action might be to NOT know. Here’s why.

If your neuro is an MS expert—and you trust your doctor to do what’s best for your health—you personally knowing the number of lesions, in particular if it is increasing, could make a bad situation worse. Say your MRI is lit up like an arena of cell phones during a love song at a Justin Bieber concert. Option A) Doc: “We can’t count the number of lesions there are so many. Holy cow, I’ve never seen so many. Think a firefly convention in midsummer, ha ha.” Result: You stress out, you get depressed (or both) and people who love you cry and worry. Stress brings on a relapse and you get worse. Option B) Doc: “We’re seeing some activity, maybe we should look at other treatment options.” Result: You look at other treatment options… without stressing the hell out and freaking the crap out of your mom who still worries about you just crossing a street. I personally prefer Option B.

Originally published July 29th, 2010


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 Lori Schneider (correction: I previously mentioned Wendy Booker, another climber who climbed but didn't summit Everest), 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. Updated April 3, 2018.


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.


Your Odds? MS Treatments and Weighing Risk

Every single day we take life-and-death risks. We just don’t always think about it. So when people on multiple sclerosis websites furiously comment (inevitably in all caps) that I WOULD NEVER PUT THAT POISON CALLED TYSABRI IN MY BODY it gives me pause. When Tysabri launched, the drug posted a “black box” FDA warning of a 1 in 1000 risk of developing PML, a viral disease that is often debilitating and can be fatal. But how risky is that? I mean, if you were in a football stadium that seats 60,000 Tysabri users, an average of 60 of you would get the disease. That sounds scary. Yet those are about the same odds of you drowning (1 in 1073) in your lifetime, according to the National Safety Council. Now I know what All Caps Guy is thinking—I WILL NEVER TAKE A BATH OR SWIM IN A POOL OR GO TO THE BEACH OR WALK NEAR A RIVER OR CROSS A BRIDGE OVER WATER OR PEE STANDING UP IN THE EVENT I LOSE MY BALANCE, HIT MY HEAD ON THE BACK OF THE TOILET, KNOCK MYSELF UNCONSCIOUS AND DROWN FACE-FIRST IN MY OWN URINE. Hey, it could happen. But there far higher odds your life will end in other ways. Crossing the street: 1 in 623. Getting shot: 1 in 300. Falling down: 1 in 184. Accidentally getting poisoned: 1 in 139. Suicide: 1 in 115. And leading the way (other than heart disease, cancer and stroke), dying in a car accident: 1 in 85. That means 706 people in that imaginary stadium ultimately will die behind the wheel.

I’m not promoting or advocating Tysabri or, for that matter, any other treatment. And I don’t mean to trivialize risk—it’s real and not to be taken lightly. (In fact the risk for PML increases the longer you take the drug. After two years the risk doubles, although even then that still means you have a 99.5% chance of not developing the disease.) I’m just trying to put it into perspective. Multiple sclerosis can be a challenging disease and taming it effectively, for better or for worse, often means taking calculated risks. Many current and upcoming MS treatments, not to mention clinical trials, certainly carry a level of danger—some more than others. But that needs to be weighed carefully against the potential upside, which can be significant. Also when it comes to risk, consider how your disease may progress if you don’t take that medication or don’t do that treatment. There’s risk there, too. Of course, heck, tomorrow you could always get hit by a bus DRIVEN BY A GUY WHO TYPES IN ALL CAPS and then you’ll never have to worry about making an informed decision again. But what are the odds?

Originally posted March 10, 2011.

Paying Serendipity Forward

In 1860 Ralph Waldo Emerson wrote in The Conduct of Life that “Shallow men believe in luck or in circumstance. Strong men believe in cause and effect.” So last winter when serendipity curled around me and my wife like the warm midday sun after a cloudy morning, it would have been easy to simply enjoy the glare of good fortune. After all, we had been through a lot recently with my multiple sclerosis; we deserved a little providence.

We were checking into a cozy bed and breakfast in southern New Mexico when we noticed a couple enjoying wine at the inn’s small bar in the kitchen. (It’s always a nice touch when B&Bs have a complimentary wine hour in the evenings.) But after some small talk with the other guests, we realized a) the inn didn’t offer a complimentary wine hour and b) the wine we were drinking was in fact that of the nice couple we had recently befriended. Admittedly, I am talented in the art of the faux pas and have expert skills in the plying of alcohol, but I don’t usually display them with such gusto around strangers.

The evening tumbled forward in the most unpredictable of ways. We shared our life’s successes, its hurdles, and our quirky passions. We even discussed the artistry and anguish of the television show Breaking Bad for what had to be a full hour. Eventually we were toasting glasses of Stag’s Leap cab sav over an opulent steak dinner at one of the state’s priciest restaurants with these people we had just met. And my wife and I were not able to pay for any of it. Andy wouldn’t let us contribute a cent. Really. It was that kind of night.

It’s easy to forget when you have a disease like multiple sclerosis that your life isn’t the only one that is difficult or challenging or painful. Our new friend Andy tragically had lost a son some years earlier in a dorm room fire—a fire set by an arsonist. He was helpless to prevent his son’s murder. Then he lost his wife; couples often divorce after the death of a child. I am sure that he continues to grapple with his life’s daggers and there is no way I would trade my MS for his heartbreaks. And there is no way I will ever forget his generosity.

“I learned from my son’s death not to wait for tomorrow,” Andy wrote on a memorial website for his son. “To be a little more patient with others. I also learned the importance of being true to one’s self and I also learned how to be more forgiving.”

A couple weeks after meeting Andy and his new wife, we were at dinner sitting next to a pair of innocent high school students clearly on a date and lost in themselves. She spilled a glass of water in her lap, giggling through her braces; her young boyfriend quickly volunteered his sympathy and then his napkin. We couldn’t possibly guess what their future holds—what life hurdles they’ll ultimately be faced with—but for that night we made their today a little more memorable. We paid Andy’s generosity forward and covered their dinner tab in full. (Granted, they drank water and ordered no appetizers or desserts, so we can’t take that much credit for being altruistic.) When the young man found out at the end of their meal what we had done, we got the most heartwarming of compliments: “Whoa, that’s sick, dude.”

I remember being that boy. Dating a cute girl in high school. And I married her. (The photo I've posted is shortly after we started dating—I had just turned 20 and Laura 17.) This week we celebrate our 20th wedding anniversary. Now that is sick. Thanks, Andy, for the reminder not to wait until tomorrow and for demonstrating the power of paying it forward.