MS Musings

As I sat in a tippy wooden dory deep in the Amazon rainforest—dripping wet with sweat, DEET, and the remnants of a sudden afternoon shower—I couldn’t help but wonder about the wisdom of my decision to spend an afternoon fishing. Specifically, fishing for piranha.

In theory, catching these little terrors of fresh water doesn’t take a lot of skill. It’s pretty basic: raw beef and a hook. To get their attention, you flail your pole around on the surface of the water and then let the bait sink, as if some living thing had just croaked. While piranha have the capacity to tag team a live cow and munch it to the bone in a matter of minutes much like a teenage boy who skipped lunch, they’ll only go there if they are trapped and really, really hungry. They prefer snacking on dead stuff that won’t fight back. So that’s where cubes of Brazilian steak come in handy. Lots and lots of cubes. See, I quickly discovered these little buggers are both sneaky and fast. Pretty much as soon as I’d feel a tug and yank up the line, I was left with a freshly de-meated hook and no fish.

About a dozen steaks later, I came to the realization that all I was doing was feeding the piranha like one would feed a pet dog. (“Does little piranha want a treat? … Ohhh, yes you do, yyyes you do.”) Plus, I was pretty certain that giving away all this meat was ensuring a vegetarian conclusion to our Amazon adventure. And then I got another nibble and wrenched up my pole. OH MY GOD I HAD HOOKED A REAL LIVE PIRANHA … IN GENUINE 3D! Here’s where things got interesting. Apparently there are a lot of nine-toed fishermen in the Amazon. I had never considered the possibility of what would happen if I actually caught a toe-eating fish. Getting it off the hook before it ate said hook—then the line, the pole, and then my arm—was now job number one. So I did what any brave angler would do: I threw the pole to our guide in sheer terror.

That afternoon I had wanted nothing more than to catch a piranha. Until I caught one. And perhaps that’s the teachable MS lesson in all of this. Be careful what you wish for—it might not be everything you want. I know many of us with multiple sclerosis have been clamoring for years for an oral drug instead of medications that require a stick. And now an oral disease-modifying medication is available with more in the pipeline. But new drugs come with their own list of side effects (some potentially serious) and a treatment history that is shorter than a Mike Tyson fight circa the late 1980s. If injections or infusions are working for you, perhaps the best course of action is the status quo. For now, at least. After all, you never know when you’ll end up with a piranha at the end of your line.

For most people, New Year’s resolutions go the way of fleeting fame, re: the Man with the Golden Voice—they start out with the best of intentions and then after a few weeks (which as the formerly homeless radio announcer discovered may or may not include a visit to Dr. Phil and a trip to rehab) they crumble into fine dust and skitter away in chilly late January winds. There has to be a better way. It turns out there may be: announce your intentions, say researchers. In particular, tell strangers, like those on an internet forum, about your designs for a better you. Studies have found that the more folks who know about your resolutions, the more folks you’ll have in your corner to root you on to accomplish your goals… and the more pressure you’ll put on yourself to make good on your commitments. And why strangers? Unlike a skinny family member who might relish being “the thin one,” compatriots like those on the message board of ActiveMSers (http://activemsers.wssnoc.net/index.php) don’t have hidden agendas. Better yet, you share that common bond of having multiple sclerosis and understanding the daily challenges involved in fighting a chronic disease. So you might not know me, and your resolution might have already moved back to a shelter in Ohio by the time you read this, but know this: I believe in you. After all, you’re here, right? Sometimes that first step in turning a new leaf is more of a shove from behind. So get your a$$ in gear! You can do this. Absolutely you can. Just let me and your virtual friends help you out.

Oh, and how do I guarantee my resolutions stay intact every year? Easy. I always make a resolution not to make any more resolutions other than the one resolution not to make any more resolutions. Works like a charm every January 1st.

On July 7—an auspicious day in many cultures—I went drug free in preparation of going on a new treatment within the next couple of months. To commemorate this next stage of my battle with this disease, I thought about getting a tattoo or piercing. And then I thought about how much needles and pain freak me out. A HELLA LOT. (Heck, I gave up watching medical shows years ago for the sole reason of seeing too many needles stuck in too many arms.) I considered the henna thing, which I did in Morocco, but that seemed too transient and too, well, girly. Skydiving entered my mind and then promptly left at approximately 32 ft per second. What to do? So today, my full head of hair went Army of One (but I left the beard). I told my adoring wife that I would look just like soccer superstar David Beckham … only without the six-pack abs, the shocking-handsomeness of a male model, the perfectly chiseled body, and the $45 million annual salary. Or I’d look like a cancer patient who was having difficulty walking. Bemused, my wife nodded and told me my stubby hair would eventually grow out. At which point she would allow me to, once again, share her bed. After the initial shock (thankfully, she never saw the Mohawk, but you sure can in the ActiveMSers website forum, http://activemsers.wssnoc.net/forumdisplay.php?f=2) she has accepted the lack of locs and has affectionately nicknamed me BP, short for Brillo Pad!

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.

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.

When I have to motor over varied terrain I often use my trekking poles. I’ve come to expect the occasional quizzical look or two. But I’ll admit the snarky, “I don’t see any snow” comments sort of piss me off. Not enough to make me want to clunk the jerk in the head with my Lekis, but enough for me to stew about it. So when some dude (presumably British, not that there is anything wrong with being British) recently said to me, “Chap, it’s not snowing,” which I responded to at the time with only a smile, I decided to prepare a list of comebacks to make these idiots question their idiotic statements. Option a) full frontal assault:”In my world where my body is being ravaged by multiple sclerosis, it’s a blizzard every single day.” Bam! Okay, that might be harsh. Option b) is a bit more subtle: “I’m training to be the first person with MS to climb Mount Everest.” When they say, “Really?” you can say, “No, I just have MS.” Option c) is more antagonistic. They don’t see any snow? Well… “I don’t see any assholes. Oh, wait. Yes I do.” Alas, I’ll probably still just smile, but it is cathartic coming up with snappy returns that will probably forever stay in my back pocket. Probably.

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.

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.

Kinda freaky, I’m always catching myself looking at people in wheelchairs—and, my God, there are a lot of folks in wheelchairs—and wondering if they have multiple sclerosis. I create entire lives in my head, about how they got there and what they had to go through. It’s sobering and I want to help. But sometimes I feel the only thing I can do is open a door and hope that if I’m in that situation someday, others will hold that door for me, too.

We all know about Montel Williams and Teri Garr and Michael J. Fox. Of course scratch Fox, he has Parkinson’s like Ali, but most folks (including many of my friends) don’t know the difference—they just know these celebrities all have some strange degenerative disease. With multiple sclerosis sneaking up on 1 in 1,000 people, odds of other famous people having MS are a certainty (in fact I know one myself who is staying quiet for now). But after what happened to Garr—she was darn near blacklisted—celebs aren’t going to come out into the open until they absolutely have to. While it would be great for us MSers, I can’t say I blame them.