MS Musings

I work very hard at making sure multiple sclerosis doesn’t rule my life. But sometimes it does make the rules–rules I don’t agree with, but begrudgingly follow. Case in point: my recent adventure to the Kingdom of Bhutan, an unspoiled country in the Himalayas, rich with culture, scenery, and dramatic monasteries. One of the country’s holiest sites is Taktshang Goemba (Tiger’s Nest Monastery). Perched 3,000 feet above the valley floor of Paro, Taktshang hangs on a cliff face, accessible only by a twisty mess of hundreds of stairs. Rocky, uneven stairs without railings, and precipitous drops guaranteed to take your life with a misstep. With trekking poles I’m a mountain goat, but stairs without railings are admittedly a nemesis, requiring much more concentration and careful foot placement. Was it worth risking plunging to my demise to visit Tiger’s Nest? Odds were good I’d make it without incident, but I recall odds were also good I wouldn’t end up with a crappy disease. I made the difficult decision to pass, and watched with binoculars as my wife and good friend Andy visited the holy monastery. Dozens of people passed me from my safe perch. When a man from Holland turned back due to fear of heights, I was patting myself on the back for making such a wise decision…. But then an 85-year-old great grandmother went by me, barely able to walk, on her quest to Taktshang. Hmm, I thought. And then not five minutes later, a blind dude, grabbing onto his friend’s backpack and using his white cane to identify each step, happily hiked past. Okay, that one stung a bit. But he was Bhutanese (probably a confident climber) and he wouldn’t get vertigo looking down a cliff face (one of the rare benefits of being blind). It’s absolutely inspiring to see others make the best of their disabilities. Sure, having MS means saying no to some challenges that an earlier you could have taken on with gusto. And that’s okay. I’d rather decline a challenge than to be faced with no challenges at all.

I got a call the other day from a woman who appeared to headed to a diagnosis of multiple sclerosis. Her doctor had said it was a possibility, and just hearing those two words–multiple sclerosis–sent her down the path that many of us have trodden: Multiple Sclerosis Worst Case Scenario (MSWCS). Yeah, you know what I’m talking about. MSWCS is a common affliction of those newly diagnosed or in limbo. Your brain immediately fires up the WCS lobe and now the worst things that MS can do to you are not only a possibility, but practically a given. In a wheelchair. With no bowel or bladder control. Blind. Deaf. Can’t swallow. Can’t talk. An absent brain. And you are so numb you can only feel your nose, which itches all the time. But you can’t scratch it because you can’t move your arms. Oh yeah, and your health insurance got cancelled, your family put you in a budget nursing home, and your dog was adopted by a Mr. Vick. When these thoughts weave their way into your mind, you have to tell your brain to SHUT THE HELL UP. Sure, MS can do all of the above. But why dwell on it? MSWCS is quite unlikely. Stats show that many people with MS can and do leave relatively normal lives. Yes, you’ll have to make changes. No, it won’t be easy. Focus on what can you do today and worry about tomorrow, well, tomorrow. And with the advances in MS research, odds are good that there will be some powerful treatments (potentially even fixes) coming in the not-too-distant future. So banish all MSWCS thoughts … use your brain for more important matters, like a good sudoku puzzle.

My sister, Kathryn, was worried about her bro’s recent attack. So one of her friends had a great idea to cheer me up (apparently I was a bit pissed off): a genuine pimp cane, complete with a regulation 8-ball for the handle. It is, in Snoop speak, the fashizzle my dizzle hizzle. For younger MSers, I can only imagine how much pride one would feel walking into high school or a college class with a new pimp cane  Heck, I’m going to take mine to parties as a conversation starter. It would go something like this. “Yeah, having MS isn’t great, but you can legitimately use a pimp cane even if you are not a pimp. How great is that?” “Wow, that’s awesome, dude. I wish I had a pimp cane, but I don’t have MS … or ho’s. You are one lucky dude.” Yes I am. For those unclear on what a pimp cane is, allow me to borrow from the Urban Dictionary (www.urbandictionary.com):

I guess I was due. It had been two and half years since my first attack, which numbed the entire right side of my body. Odd, I didn’t see it coming last month. I snowboarded a full day in Telluride. I went shoeshoeing for two hours the following day. I was guessing I just overdid it. Okay, so my right leg was A LOT weaker. Going from the couch to the fridge to get a beer was an ordeal. And lifting said beer with my right arm actually required serious effort. It felt so stinkin’ heavy! And then there was that burning sensation all over my body. As the wave of new symptoms slowed rolled in, each swell eroded my confidence. I wasn’t prepared mentally. One night when my wonderful wife Laura was away, my leg screaming at me, I realized I didn’t have the strength to stand and do dishes. So I just sat down in the middle of the kitchen floor. And cried for five solid minutes. I hadn’t cried about my MS like that since I was first diagnosed, but I needed that release. The next day, I caved and called the neuro to give them an update. Come in the next day, they said. Two days later I was getting my first of three 1,000 mg steroid infusions in the hospital, all the while stubbornly still going to the gym despite barely being able to walk. A week later, I’m now back to my relative “normal” self–the burning is gone and most of my strength has returned. Even though I put on airs of nothing-gets-me-down super ActiveMSer guy, my kryptonite experience in the kitchen–which my wife will hear about for the first time reading this blog (sorry honey)–serves as a reminder that this disease can, at times, be impossibly hard to cope with. (And I fully realize I had it relatively easy!) But cope we must. Tomorrow always dawns another day… and renewed hope.

As the 2008 ski and snowboard season ramps up, my skills* are on the downslope. Now I could sit around and cry in my beer, but what would that accomplish, other than watering down perfectly good beer? I got in my first runs of the season in September on the other side of the world in gorgeous New Zealand. It started out a disaster, as I was able to barely clunk down the hill. (Picture a drunken sailor … who walks the plank, plank breaks, he washes ashore on some remote island in the Pacific–saved by said plank–and then shockingly ends up at the top of the Remarkables ski area on a snow-slicked blue run. Truly a bender of benders. Still drunk, he straps the plank to his feet and tries to board. That’s about what it was like.) But my wife said to keep going and to stop my blubbering about looking like a drunken sailor. After all, I hadn’t been on a board all summer. Eventually my legs cooperated, my brain remembered, and soon I was sailing again. Well, sort of. Getting to the lift was the hardest part. On one lift that served blue and black terrain only, I asked the lifties to slow ‘er down so I could skate out. Concerned they were dealing with a clueless beginner from the US who was about to get in waaay over his head, they shouted to me, “Why?” “Because I have a bloody disease,” I yelled back. The lift slowed down.

*I cannot help but think of Napolean Dynamite whenever I use the word “skills.” And actually, yes, I do have some rudimentary numchuck skills. Not very practical, unfortunately. 

Today, a thirty-something year old man tried to commit suicide by leaping from behind a bush into my truck, which was traveling 40-45 mph. I had essentially zero time to react, but perhaps just enough to turn the vehicle a shade to the left to avoid a head-on collision, which would have certainly killed him. Instead he bounced off the side of the vehicle, destroying the side-view mirror, and collapsed onto the street in front of three lanes of traffic. Thankfully all three lanes stopped and miraculously the man got up, brushed himself off, and started to walk away. He said he was unhurt … and then fled the scene. Fortunately the police caught up with him (he had been arrested earlier that day, I don’t know what for), and said that he had some mental issues. The stress of hitting someone ramped up my numbness for a bit, and just writing this down has given me the tingles. But as bad as MS can be, I’m thankful I don’t have his issues. Suicide is rarely a good solution and I’ve seen the devastation it causes first hand. A year ago I couldn’t stop one of my best friends from committing suicide. Today, though, I may have helped spare a life. I hope the man finds his way. Life is worth living.

So there I was, on my back, slinking feet first through a hole just 10 inches high. I call ahead to the guide. “There isn’t some crazy abyss on the other side, is there?” After all, I could only see rock inches away from my face, as I had to tilt my helmeted head to the side to make the tight squeeze. His response was not comforting. “Actually there is, so you’ll want to place your feet exactly where I tell you, then mantle across to the rock saddle the bisects the drop-off, and carefully scootch across on your rear.” Perfect. 100 feet underground in South Dakota’s Wind Cave on the park’s ”wild cave tour” with eight other gullible souls, none of whom had multiple sclerosis like me. Despite the 53 degree temps, the four-hour tour had fired up my vision issues and my right leg was getting sketchy. AND I HAD TO SLINK ACROSS A NARROW SLIVER OF ROCK OVER AN ABYSS? I could already see the headline. “Founder of MS Nonprofit Dies in Cave Accident; Guy had it Coming.” I debated my options. Try. Or die trying. While most of the cave was relatively easy to navigate, with lots of handholds and crawling, this was the final of three challenging sections. So I turned off my brain, tried not to stress, and focused on the task at hand: not dying. As you can tell since you are reading this, I was successful. The rest of tour was cake, except that the fright of the abyss and frequent stooping knocked my legs out. I could crawl, but walking was a major chore for the last hour and I eagerly looked forward to every little break. Would I do it again? Maaaybe. Would I recommend it to other MSers? You better be in great shape. And not have a fear of heights. And enjoy getting into literally tight situations!  

Picture yourself on a long road trip with friends. It’s dark. The roads are mostly empty. And since your iPod ran out of juice (and you forgot the car charger), you’re forced to tune into the radio, which in this remote area of the country, only gets elevator music. Mellow elevator music. But before heads can nod off to sleep, your bladder, with its incredible sensitivity due to MS, comes to the rescue: ”gotta pee!” You pull over at the next rest stop, everyone stumbles out of the car into the fresh air. There will be no snoozing at the wheel with an MSer riding shotgun.

My dear, dear mother-in-law passed away from breast cancer the other day. She was a friend, indeed a kindred spirit, for the nearly 20 years that I’d known her. When I saw Pat the night before she died, I told my wife Laura that I’d be strong for her. That she needed to worry solely about her mother. But my stiff, robotic walk–brought on no doubt by stress–betrayed me. No matter. I proudly delivered her eulogy the following week, legs (relatively) limber, eyesight barely askew. I miss her.

Regardless of your political affiliation or leanings, you might be surprised to hear that I discovered the other day that war is, in a roundabout way, helping us MSers.  How? Well, it’s hot in the desert, and our soldiers need to stay cool. So the military has been investing in advanced cooling technologies–yup, the kind of cooling technologies that could help you and me. I recently spent time at the University of New Mexico meeting with researchers who are experts in the field, and the advances hold lots of potential. Stay tuned. It looks likely that over the coming months, ActiveMSers will be working with these researchers and looking closely at cooling gear solutions for people with multiple sclerosis.