MS Musings

The other day I was reading about a fellow MSers dilemma. Recently diagnosed, he wondered if he should go with his son on a long-planned camping trip—in the heat, no refrigeration for his meds, and an uncertainty about how he would fare in the back country. There should have been no dilemma. If you think you can do it, do it. Don’t wait. Don’t delay. Don’t ever look back and say, “I should have.” Multiple sclerosis is an unpredictable beast that can be as mild as a bell pepper or as nasty as India’s Naga Jolokia, the world’s hottest chile pepper. So last month when Wolf Creek ski area decided to open just for the weekend (in mid April, mind you), there wasn’t a moment of hesitation. I had to go. And I’m glad I did. My last day of the ski season was one of those blissful powder days when my disease all but vanished. But it didn’t start that way.

For my first run, my legs barked at my brain in frustration as I clunked down one of the easiest trails on the mountain. I sat down before the last headwall, wondering if I should take the easier cat-track around or tackle the steeper pitch, which can get a little bumped up.  “You can do it, dude,” said a snowboarder eager to help me overcome my fear of a green run suited for beginners. “What level are you?” he asked. “Expert,” I said. “Former expert.” To say that was sobering. “No problem, man. You got this. Coming back from an injury or whatever, you can do this.” My new snowboard friend was determined to get me off my ass and down the mountain. It worked. The rest of the day, my wife at my side, I went down black diamond runs I hadn’t been able to board for the last two seasons. Everything, inexplicably, clicked. We pounded all day, the legs never tiring. Even when a whiteout hit and the lodge was packed with not a chair available, a woman—who saw me squatting to save leg strength—offered up her seat. She would eat her lunch standing up. I told her karma has a funny way of working out.

The storm easing, my last few runs were perfection—floating arced turns on virgin, untracked powder. I don’t know what next season will bring. But I do know that I won’t have to say “I should have.” Because I did.

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!

I debated writing this blog. And from the title, you can probably see where this is going and why I’d be apprehensive to chat about it. And why there is a Too Much Information (TMI) warning. If you are newly diagnosed or freak out about the possibility of a “personal accident,” don’t read beyond this sentence. But the bottom (pun intended) line is that if you have multiple sclerosis, bowel and bladder accidents can and do happen more than you probably realize. If it hasn’t happened to you (at least not yet), then reading this might help soften the shock of that first unintended mud bunny. And if it has happened to you, know that you are not alone by a long shot. I can now proudly raise my hand and say, No, I didn’t have time to drop the kids off at the pool. No, I didn’t make that deposit at the porcelain bank. And no, I was not able to help the Browns land in the Super Bowl.

See, driving up to the ski area the other weekend to do a bit of snowboarding, my stomach was gurgling a touch. No biggie, I thought. We parked and I started getting my boots on, jazzed to hit the slopes. The stomach gurgled again. Oh, a bit of gas, I thought. And then that sickening, that-wasn’t-gas feeling hit. The restrooms were at least a two minute walk—no time to stock that pond with brown trout. I had 30 seconds, give or take, to make a decision. I could 1) make some trouser chili in my one and only pair of ski pants or 2) make like a guy from Comcast and lay some outdoor cable. Like hell I was going to let multiple sclerosis ruin a good day on the slopes! I chose number two (sorry, another bad pun) and unloaded, conveniently, in the ski area’s loading zone. (If anyone asked, I was prepared to say, Hey, just following the rules.) Everything went as well as could be expected and for the most part my pavement squat went unnoticed. Until, that is, the parking lot shuttle, packed with eager skiers, pulled up. Oh jeeze. “Umbrella!” I yelled to Laura, who quickly shielded me from curious eyeballs. My day of boarding was saved … and I got some great blog fodder. Hey, it’s just life with MS. Sh*t happens, and then you move on.

On the afternoon of my sister Kathryn’s wedding, I could tell my body was not happy. My vision was getting screwy–a digital alarm clock three feet in front of me was just a blur of red. Walking, and I use that term loosely, felt as if I were on the last push to the summit of Everest–every step a thoughtful and energy-draining endeavor. But it was her day and I wasn’t about to miss it. Dad helped my tie my tie and button my shirt. My wife Laura, who was feeling as miserable as I was (only without the vision loss and walking probs), made sure my hair was in place and that I had matching socks on. Somehow we made it to Kathryn’s wedding on time … and I listened to the whole thing. Until I saw pictures later, I could only presume she looked beautiful. An open bar and delicious appetizers awaited downstairs and in my state none of it sounded appealing. But I said I’d take the elevator down and hang in there for a bit longer. What, the elevator is broken and has a tendency to trap people inside? Yikes. I took the stairs, using railings and shoulders. A half hour later my goose was cooked, as was Laura’s, so we departed without the multi-course dinner. Upon arriving home, my temperature revealed the source of my agony: 102 degrees, high for an adult, excruciating for someone with multiple sclerosis.  But I was still upbeat. My sis had a wonderful wedding … and her new husband had packed us up a doggie bag complete with every item on their extravagant meal, which we were able to finally enjoy a few days later.  

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. Most recently 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 can these days … and I’ve got a memory that will be with me until my last breath.

People always give me a strange look when I tell this story. Maybe it’s hoo-haw or total coincidence. See, I think I remember the day and the hour I gave myself MS. When I went in for my Hepatitis B shot (I travel a lot internationally), my doc warned that there had been cases potentially linking the Hep B vaccine and multiple sclerosis. He asked if I had any family history of MS? Nope, I said. Did he have any patients who got MS as a result of the shot, I asked. Maybe one, he said, but it couldn’t be directly linked. I asked him what he would do and he said, “The odds of you getting Hep B on your travels are a lot greater than you getting MS from this shot.” I travel extensively, and planned to do so until I was six feet under. So I said, and this is where it gets a little freaky, “If I’m meant to get MS, I’ll get MS,” and then tapped my shoulder for the injection. A week later my symptoms started: flashes in the eyes. I’m pretty anal about my health—heck, even before MS I always made a mental note of the little things, and often wrote them down in my journal. So when I had my first severe attack eight months later, after multiple visits to the eye doc and to my PCP about other strange symptoms, I looked back for a trigger. When did all this weirdness start? Go figure. Now, do I think the Hep B shot causes MS? Not in most people. Indeed, study after study says no, and I believe them. But with me, it appears it woke up something that had been sleeping. Another vaccination or a cold (or any myriad of triggers) could have woken the MS in me a week, a month, a year later. Or perhaps it would have stayed in its slumber. I’ll never know. For a few weeks I was bummed that I could have given myself MS. But thinking back to that doc visit and weighing all the facts, I would have gotten that vaccine 100 out of 100 times. Destiny? Perhaps, and that’s okay. With all the new friends I’ve made in the MS community and with all the people I’ve helped battle this disease, I wouldn’t have it any other way.

I can be a stubborn son-of-a-bitch when it comes to staying active. Tennis is a perfect example. If you looked at my physical ability to play a racquet sport, you would probably say the closest I should be to a tennis court is a Wii and wide-screen TV. I can’t run—or even jog for that matter, my legs are just too sloppy—and when my body warms up from activity, my eyesight vanishes like a hot dog in front of Kobayashi. Picture it. Within five minutes of getting on the court, there’s an immobile blind guy holding what might as well be a flattened pasta strainer in his right hand. And yet I can still compete, even take the occasional set, from my wife, a capable tennis player. How? By rewriting the rules, MS style. First, she has to make an honest attempt to hit the ball at or near me. Second, she has to play double lines. Third, I get as many bounces as I need to give my eyes a chance to pick up the ball.  Now you might wonder if this is fun. Absolutely! I still have a solid forehand and respectable backhand to keep her running from side to side. Even though I only pick up the ball in splotches, I rarely miss completely, watching Laura swing and using muscle memory to gauge when and where to swing the racquet. Although I serve flat-footed—jumping is like running, it ain’t happening—my first serve is better than my pre-MS second serve ever was. I even score a couple aces a set. So I guess my point of this story is that even though I have a mountain to climb, by using enough ropes, a little ingenuity, and, well, bending the rules, I’ll still get there dagnammit.

Except in extremely rare cases, multiple sclerosis ain’t going to kill you. Most people who have MS know this already. But since I just wrote a column in Nissan Sport (the magazine I co-own) about my personal battle with MS, I realized I neglected to specifically say that one of the side effects of the disease is NOT death. In fact, these days most MSers live a full life. Now that being said, there are days when we feel so crappy, so depressed, that we wish we were dead. Fortunately for me, those days are few and far between. I’m hopeful about the future, and I do believe a cure will come in my lifetime. Will it be soon enough to do any good? Maybe, maybe not. I can’t dwell on that uncertainty. But with the continued funding of research all over the world, advances are being made daily … and with those advances, my odds, your odds, and those who will be diagnosed, all improve. I hesitate to ask friends and colleagues to donate money to MS research. After all, there are gobs of great causes that desperately need funding. So instead of asking, I set an example. If those of you reading this believe in what I am doing with ActiveMSers, understand a little bit better the struggles people are going through every day with this disease, then perhaps that will help stimulate that generosity gene we all have. And when it does—and it will—I and 2.7 million people living with MS humbly thank you.

Over the weekend I participated in a 5K Fit Walk to help raise money for MS. I got to wear a number, start off with a massive crowd, the whole bit where it seems you are taking part in the Boston Marathon. Only it was Albuquerque. And it wasn’t a marathon or even a race, it was a walk. A noncompetitive walk. And yet a walk that saw me cross the finishing line after an hour and 20 minutes to cheering crowds chanting my name. “Go Dave!” “Woo-hoo Dave, you rock!” ”Dave! Dave! Dave!” All for finishing DFL. Dead F#cking Last. How did they know my name? Probably because the volunteer course sweepers had to radio in to the finish about some guy and his wife still on the course. And people were probably cheering because they could finally go home now that the final two stragglers had finished, but I digress. Every volunteer I passed, I thanked. And told them I wanted to make sure they earned their volunteer dollars–no getting out of their posts early. When I went past water stations, I requested they hand me the water as if I was screaming by. I’d grab the Pixie cup, take a swig, toss the rest on my face, and huck the cup to the side just like the pros! Only every time I tried to drink, it went down the wrong pipe, and I’d start hacking and gacking. Walking and drinking is not in my repertoire. How the hell do you drink out of a cup when you are running? Now I do have to admit my performance wasn’t truly DFL worthy. Because the event was so popular, we had to park 1K away (so I ultimately did a 7K walk). I was getting over a miserable cold that had left me blind and stiff as a board just a couple days earlier. And stopping to talk to a number of friends along the way let the pack get away from me. I thought I could make up the ground, but my legs decided to stop participating at about the the 2K mark! Still, with the immense help of trekking poles, I managed to drag my stupid body the full 5K so I could bask in all that is DFL glory. Also know that I DFLed for MSers worldwide. Because the next time you participate in any sport, in any event, you can rest assured that you can do no worse than yours truly. Woo-hoo, go Dave!

I’ve always told my wife Laura that I’ll be her rock, no matter what happens with this disease. No, no, I’m not talking pumice or some tiny pet rock you find in a box. I’m talking serious rock. Hard stuff, like granite. Or the abs of Olympian swimmers. Which brings me to a couple nights ago. My sister called, asking me if we had seen Michelle Obama’s speech. I’m Tivoing all the headline speeches from the DNC and the RNC and we hadn’t yet watched it. “Watch it now,” she said. So we listened together to Michelle Obama discuss her father, who had been diagnosed with multiple sclerosis in his 30s, just like me. And he, too, was the family’s rock, a job I’ll never relinquish. Regardless of your political convictions, it was a compelling message of hope and courage. It touched home and made both of us cry. Laura knows I’d go to the ends of the earth to give her a kiss … or use two canes to get across the room to meet her lips. This disease can require incredible mental fortitude. At times, thoughts of staying positive can sound as hollow as a canyon echo. But it is doable. You can be the rock.