Tuesday, June 13, 2017

My Big Fat Greek Odyssey

Sometimes travelers have it a bit rough. Like that Odysseus dude, who took 10 years to return to Greece after the Trojan war, enduring cyclops attacks, deadly whirlpools, six-headed monsters, seductive sirens, blah, blah, blah. Okay, so he had it more than a little rough. But the one thing he didn’t have: multiple sclerosis. Now that would have really cemented his legacy.

Well, last month I found myself for the first time in Greece, often called the cradle of Western civilization. And, completely unintentionally, I also found myself trying to one-up Homer’s hero in terms of overcoming challenges. How do I always, always get myself into these situations?

When you are in Athens, it is pretty much a requirement to go to the Acropolis, the ancient citadel featuring the legendary Parthenon. And for 99.9% of the visitors, there is one way to the top of the 500-ft high rock outcropping: a steep, cobblestone path that is decidedly unfriendly to the disabled. But for those using a wheelchair or for those with official evidence of a disability (e.g., a handicap placard with your photo), there is another way to the top: An elevator, which was installed prior to the 2004 Olympic games.

But would Odysseus stoop to using an elevator? Oh hell no. I mean, seriously, elevators hadn’t been invented yet, so of course not. I, on the other hand, was more than happy to shed my superhero cape and take the easy way up. There was just one minor problem. Or two. Or three.

“How good are you at climbing stairs?” our guide asked, apparently confusing me and my wheelchair for a Greek god and a chariot. Sure I have muscles, but I’m not that ripped. And I’m not Greek. Gulp, she was being serious. The elevator up the precipitous cliff face to the Acropolis was fully operational. But the wheelchair lift to get to that elevator had just broken. Ahead I guessed were 847 steps (I’m bad at estimating—it technically was about 30) that had to be ascended if I was going to view the Parthenon up close.

Complicating matters: Athens was suffering an unusual early-May heat wave. Atop the rock outcrop it was over 90 degrees, humid, and shade free. And the Acropolis, I knew, wasn’t fully accessible. To get to the best views I’d have to walk a short distance over slick marble worn smooth since the 7th century BC. And, uh, I’m somewhat afraid of heights, problematic when the sole operational elevator clings to a cliff face like an elevator clinging to a cliff face. Jesus.

Oh, what would Odysseus do? Probably exactly what I then did—mutter some profanities and giddy up. When you have a disease that challenges you, often you have no choice but to meet those challenges with tenacious stubbornness. Tomorrow, next month, or next year my MS might not be so forgiving, so I was not going to miss this opportunity. No way. And yes, it was absolutely worth the effort. Indeed it was so breathtaking that it didn’t once cross my mind that I later would have to descend 847 (aka 30 or so) steps on jelly legs after spending an hour overheating in midday sun.

Even then I wasn’t too worried. As I boarded the elevator to head down, I had my own personal Athena with me to ensure my safety and watch over my every step. That goddess/caretaker also goes by the name of Laura. And she was not about to let me fall and crack my skull on our first full day of our Mediterranean vacation.

I survived. Day one was officially in the books. Ah, but my odyssey was just beginning.




Thursday, May 4, 2017

Collective Voices, Dropping the Mic

Invisible armor? Sure. And conveniently disposable.
MSers Laura, me, Yvonne, and Lisa.
Let’s not kid ourselves. I didn’t want to get diagnosed with multiple sclerosis. And I’m going to guess you didn’t either. You’ve probably heard, though, people talking about how it’s made them “a better person.” About how the disease has reframed and reshaped their lives … in a positive direction. Whaaa?

When I first heard this, I figured someone had clambered onto the medical marijuana express with no intentions of getting off (all aboard the Ghost Train Haze!). It made no sense. The only thing I was positive about when I was diagnosed: I did not want this shit. Not. At. All.

Which brings me to last week in Chicago for HealtheVoices 2017, a conference of some of the most influential online health advocates in the world sponsored by Janssen Pharmaceuticals (for the record, they paid all expenses related to my trip and everything you read about this adventure are my thoughts alone, not thoughts channeled to me by a toker on an MJ train).

The folks who really moved me. I guess that's everybody. Yes, you too, Josh (far left).
None of us there, 105 advocates altogether, planned to be advocates. Many have serious conditions, some are parents or children or caretakers, and some found this path by happenstance. But all of us—you (yeah, you), me, my fellow advocates—have one thing in common: We didn’t choose to carry this torch.

(A few things about torches. They can light the way. They can warm you in the chill. And they can also set your hair on fire all Michael Jackson like. Use caution.)

Now that I’m carrying this torch—the one I definitely didn’t want to carry—I get it. I get the “I’m a better person part.” Still totally sucks, but I get it. And working with over 100 luminaries in health advocacy at HealtheVoices has only galvanized that feeling. I was going to list all of the advocates I met that moved me, the individuals that really moved me. What folly.

First, I met everyone. As an adviser and panelist for the conference, they asked me to say a few words the first morning to introduce myself and gave me the microphone. Big mistake. I proceeded to inform the attendees that the conference was going to be a complete and utter failure, a bust of epic proportions, if they didn’t go home with a very, very special, life-changing card. That card? My business card. So yeah, by Sunday only a few names were on the potentially bad karma list (I know who you are!).

Second, they all, each advocate, moved me. And no, it wasn’t because they took turns pushing me around in my wheelchair (only Laura can do that). Their stories and energy and spirit are humbling. By the end of the weekend, there were so many mic drops I lost count. They are all now my BFFs, they all understand, they all get it.

Now before you have a conniption fit, understand we are still best buds. Nothing has changed with our friendship. Like Tuco says from Breaking Bad, we are still tight tight. It’s just that instead of thinking only about my 2.4 million pals with MS worldwide, I’m also thinking about my friends with HIV. With IBD. With diabetes. With cancer. With schizophrenia. With psoriasis. With rheumatoid arthritis. With lupus. With you name it.

Me (surprised) and my BFF Ryan. Also shown (note arrows):
BFFs Nicole (left), Yvonne (middle) & Kelly (photobomber).
When you have an incurable disease, the weight of the world on your shoulders can feel pretty immense. But know that there are more than a billion Atlas’s out there, each one with his or her (or their) own personal earths settled on a pair of weary shoulders due to a myriad of health issues. And they all bear this weight just like you and I have to.

We still don’t have to like it. But I have to admit my life is, without question, richer because of MS. And part of the reason for that: all the BFFs I’ve made in the 11 years since my diagnosis. Not to say a cure wouldn’t be awesome, but I wouldn’t trade my friendships with all y’all for anything in the world.

p.s. Speaking of mic drops, even the sponsor got in the act. Janssen announced the HealtheVoice Impact Fund, a new $30,000 grant to fuel impactful projects created by online health advocates (501c3 not required). Anyone with an online presence can apply. That’s how the conference closed. Boom, thank you, and goodnight.

Tuesday, February 14, 2017

Eye Caramba!

Stuck on the bike path behind a logjam of cute kids on training wheels, I had to exercise patience and wait for Laura. Not because she was behind me, oh no, I was right on her tail. No, it was because I had to wait for her to do her spot-on impersonation of ER docs treating a heart attack victim with an AED. I geared down to prepare to pass as she charged up the virtual paddles.

“Clear!”

That was my signal. We moved in tandem into the opposing bike lane and stomped on it, tucking back into our lane after we passed mom and dad. I’m sure they had no idea one of the cyclists who just rode by was legally blind at the time.
Oh, the joys of MS. People are always taken aback when I detail all the ways multiple sclerosis can F with your body. For someone living with the disease, none of it is truly a surprise. But I like to say that when optic neuritis strikes, you never see it coming (sorry, sorry, terrible pun).
Eyesight issues affect about half of those with MS at least once—blurry vision, blindness, double vision, uncontrolled eye movements, graying of vision, you name it—and visual problems are often the first symptom of the disease (I had lightning flashes in the corners of my eyes). Thankfully, symptoms often recede partly or fully over time, but sadly not always. Although my vision is mostly 20/20 these days, for the first several years of my MS journey that certainly wasn’t the case.
When my eyes first started giving me fits, it felt like someone had mucked with the contrast and color on the TV of life. Everything was muted, flat, off. I so wanted to whack the side of planet Earth to fix the picture. My eye doc was frustrated, too, as the best he could correct my eyesight was to 20/40, right on the cusp of hanging up the keys to the car. But it wasn’t just the blurriness. Colors were mostly gone. Reds and greens became grays, so I was never 100 percent sure whether to go or stop at streetlights. Um, kind of a problem.
At least I could still sorta see. That wasn’t true on the bike trail, though, as exercising on warm days overheated my body, thoroughly cooking my vision. How bad was it? I only became aware of oncoming cyclists at the precise moment they were passing me by. That meant devising creative strategies to keep riding, one of which was the utilization of a seeing-eye-wife, er Laura. After I warmed up, she was not much more than a blob on the trail (a cute blob, for the record), necessitating me following her verbal commands in an unlikely bike ballet. But it worked.

Now I’m not advocating hopping on your bicycle when you are imitating Ray Charles (or god forbid get behind the wheel of a car), but I am advocating that you don’t turn a blind eye (ahem) to living the best life possible when confronting vision issues brought on by MS. Goodness, if I had taken that approach I’d have spent months in bed with the sheets pulled over my head. And since I enjoy most types of beans—except for canned limas, of course—that may have been catastrophic. Egad, just the thought.
You might be reading this blog with type the size of skyscrapers. You may be listening to it as a computerized audio translation. Perhaps someone is reading this aloud to you wondering quietly to herself who the heck is this optimistic Dave guy who overindulges in beans. The point is, you care enough not to let uncooperative eyesight rule your life. You work around it. You deal with it. You go on. We all have to go on.
Multiple sclerosis will always challenge us in expected and unexpected ways. Rise to the occasion and meet those challenges with a ferocious determination, and tell our shared disease, in the words of Mr. Charles, to hit the road, Jack. (Clarification: don’t actually hit said road as asphalt will do a number on your kneecaps.)

Thursday, December 29, 2016

A Very Public Thank You

Bear with me, please. As the calendar flips to 2017, I need to publicly thank a few folks. Okay, more than few folks. Diagnosed with multiple sclerosis just over a decade ago, I’ve had help from hundreds, more like thousands of people. Every day I can point to individuals who have made my life just a little bit easier with this disease. Now I know where I am going to end my kudos—with my caregiver and life partner, Laura. But where the hell do I start? Why not at the beginning….

So on the night my right side went numb, thank you to the ER doc for not tip-toeing around the possibility that it might be MS. And to all the neurologists and specialists and doctors and EMTs and nurses and therapists and trial coordinators since then who have supported me figuratively and, that one time, literally, when I passed out taking my first shot

My family. Karen is at left, Kathryn at right.
Thank you to my sister Karen for all of her physical therapy work, my sister Kathryn for her unwavering support, and my sister-in-law Eve who is running half marathons in every state of the union including Washington D.C. (51 in all!) to raise money for MS. Unbelievable. And thank you to my parents who back me at every turn.

Thank you to all the people who have opened doors for me over the years. And to all the people who didn’t just grab the door I was already opening because they could see that I was using it for support and that if it were to swing wide open suddenly—picture a rodeo clown throwing open the gates of a pen holding an ornery bull—the gesture of kindness would have certainly pulled me along, flinging me asunder and resulting, undoubtedly, in more thanks to EMTs. I mean, I love those guys, but I’ve seen enough of those heroes.

Thank you to all of the kind and generous members of ActiveMSers who have written me over the years with notes of appreciation, some of which have been so over the top I had to forward them on to my parents to read. And to those members who are still waiting patiently for me to write back, thanks for understanding that I don’t always respond promptly (I will write, really!). And to those few who troll me because I need to be reminded that not everyone in the universe is a fan of beer and Cheetos and my humor (wait, whaaa?).

Lenny and Claudia, two of our many dear friends.
Thank you to my friends who invite me to dinner at their home without expecting a reverse invite. To my friends who pass up rocky single track to cycle on pavement with me. To my friends who travel many miles (current record, 8,284 miles) to see me just because. To my friends who continue inviting Laura to partake in those passions that I can no longer easily do (snowboarding, hiking, the works)To my friends who understand.

Thank you to the mailman who waits for me to answer the door instead of dropping the package at the stoop so I don’t have to bend down to pick it up. (And inevitably teeter over, hello EMTs!) To my bike tech who pushes me to the front of the line to keep me riding because he knows how important it is for me to stay fit. And to my neighbors who insist on looking after me even though I insist I am fine-ish. (Urban Dictionary has 73 and counting definitions for the word fine, most of which have little to do with actually feeling fine.)

Nicole Lemelle from My New Normals.
Thank you to all who have offered passionate and “insightful” advice about diets, Lyme disease, teeth fillings, turmeric, airport metal detectors, aspartame, and the cavalcade of all of the many cures (CCSVI!) that have been published on the internet and have mysteriously escaped my notice these past 10 years. Your advice keeps me on my toes when it comes to vetting the latest MS buzz. And thanks to the researchers who work tirelessly to separate fact from the poppycock.

Thank you to all the members of ActiveMSers who continue to inspire me far more than they could ever imagine. And to those members who contribute to the website, forums, and social media, further inspiring all of us with this disease. And to all the champions of our shared disease (as well as other conditions) who I have had the great fortune to cross paths with virtually and IRL.

And thank you to my wife Laura—for everything. I notice. Every moment of every day.

To all, have a fantastic 2017. And if I didn’t thank you here, crap… that was a colossal oversight. Sorry. I’ll make it up to you in my next thank you blog. Probably in ten years because I’m lame like that. Happy New Year!

Saturday, November 5, 2016

The Occasionally Merciful MS Gods

Demi Moore was just going to have to wait for me. In fact, I didn’t even know she was there, much less an arm’s length away, which was probably a very good thing. See, at the time, I was descending some extremely precarious steps at Machu Picchu… on my rear end, one slow butt scooch at a time. And Laura definitely did not want to hear my final words be a surprised celebrity-induced exclamation “HEY, AREN’T YOU THE ACTRESS DEMI MOOooooooooore” as I plunged off a precipice, fortunate to being wearing bright prisoner-orange pants so my body would be easier to recover.

Honestly, I never thought I’d get here, to see firsthand one of the wonders of the world. With my mobility restrictions due to multiple sclerosis, heck, it wasn’t practical for me to be anywhere near here. Especially on this day, of all days.

A steady rain had glazed our train car all morning, turning the scenic ride to Aguas Calientes—the launchpad for the Inca ruin—into a trip that forebode misfortune. The rocky steps and paths of Machu Picchu, already worn smooth over the centuries, were sure to be as slick as a throw rug on a freshly waxed floor. As we picked up rain ponchos in the market to go with our raincoats and umbrellas, my stomach churned.

Up until now, the MS gods had been incredibly merciful on this trip. Despite forecasts of rain, we had met only sun. Food and stomach issues were never a problem, illness had thankfully stayed away (when I hugged my mom goodbye for this vacation, she informed me she had just gotten a cold!), and even my bladder and bowel issues were cooperating as much as they can cooperate. That was a bit of a shocker, as staying well hydrated was critical to avoid altitude sickness, a common and debilitating threat in the Andes that was never realized in our case.

As our bus twisted up the mountainside to get to the 15th century Inca citadel, a 30-minute bumpy ride, I was resigned to spending the afternoon parked next to a covered gift shop touting Peruvian knickknacks, clothing made with faux alpaca, and pan-flute CDs (gah, playing on repeat!). And then the rain stopped, the mist lifted, the sun shone, the rocks dried. I was going to be able to visit Machu Picchu, a place I thought forever off limits. Thank you, MS gods! 

And then we got to the entrance… with steps everywhere. And I was informed that if I had to use the bathroom, now would be a mighty good time—I'd have to hold it for the next five hours—as there were no facilities in the ruins. And, warning, there were many more steps to come before we could reach any vista, only without those pesky, helpful railings found at the entry. And because the Inca were such anal-retentive master builders, deep handholds in the wall were virtually nonexistent since virtually every rock was a perfect, snug fit. Curse you, MS gods! 

But then, serendipitously, it all happened. I managed the myriad steps (slowly). I managed the narrow passages (slowly). I rolled on the packed dirt paths clinging to the hillsides (slowly). And when we reached the Temple of the Sun, the most important building in all of Machu Picchu, the decision to climb to the base was nonnegotiable. The brilliant Torreon was as advertised. 

We discovered Demi later in a photo (bottom left in purple).
Taking in what I had just accomplished, I realized just how fortunate I had been. Multiple sclerosis tried its best to stop me, and it failed today. I also realized that it was wise not to push my luck. I know too well the fickleness of those MS gods. It was time to find a safe zone and park it so Laura could fully explore Machu Picchu. That meant instead of picking my way down the OMG steep steps of Temple of the Sun on forearm crutches (no doubt risking a trip-ending fall), I opted for the far safer technique of dropping down one step at a time on my duff: Move one leg, move the other, drop a step, repeat. 

Thanks for understanding, Demi.

*For those wondering, and I know many of you are, unbelievably I did not have to pee for the full five hours we were away from the bathroom. My extra layer of protection was never needed. The MS gods may never be so kind again, but I’ll take it. Also, my guides at Aracari (www.aracari.com) probably had a hand in my success as well.

Tuesday, September 27, 2016

No Regrets, Disability Be Damned

One of my life’s mantras is No Regrets. Sure, it’s cliché, but I never wanted to look back on missed opportunities and wonder What If. But when I was diagnosed with multiple sclerosis, that mantra collided with an incurable disease and it made me pause. Maybe I should take a pass more often for my health. Maybe I should live more conservatively. Maybe I should take fewer risks. So in that first year, when the enormity of coping with MS mentally was at its crescendo, I did. And I passed up a once-in-a-lifetime experience that haunts me to this day.

Now I could point to the missed opportunity to ride horses with Laura on a Mexican beach that year … when I was certain the headline in the following day’s paper was going to read Founder of ActiveMSers Dies in Freak Horse Accident. Or I could point to the missed opportunity that year to try surfing for the first time (similarly, Founder of ActiveMSers Perishes in Freak Surfing Accident). At the time, freak accidents seemed almost a given if I strayed from the safety of curling into a ball feeling sorry for myself. But no, these regrets pale to what happened in Las Vegas on November 1, 2006.

The location: SEMA, the invitation-only, over-the-top aftermarket car show that the Fast and the Furious movie franchise was essentially built around. The scene: the high-performance drifting track hazy with tire smoke and an unfortunate engine fire. The situation: As editor-in-chief of a Nissan magazine, I was being introduced to owners of souped up sports cars. But one owner had his own personal tractor beam and fan base: supermodel Tyson Beckford, at the time Ralph Lauren’s leading man.

I’ll admit my man crush was instantaneous. I remember the moment—the clothes, the handshake, the frighteningly good looks, piercing eyes, and epic jaw—as though it had happened yesterday. We talked cars. We talked drifting. I admired his modified 350Z. Tyson then handed me a small leather box (and I can say Tyson because by then we were basically on a first-name basis, at least in my head). Inside, on a bed of felt, was a gold access card. He had just invited me to his exclusive private party that he was hosting that night. Me.

How could I possibly go to a party that started well after my bedtime? How could I possibly go to such a party when I exuded about as much coolness as a pair of used lime-green Crocs. How? But there was a bigger problem, or so I thought: I had multiple sclerosis. I was disabled. I should play it safe, get my eight hours of sleep, and floss to prevent tooth decay.

So I never showed up.

Tyson Beckford. Photo by Jesse Gross.
More than two thirds of those diagnosed with MS are women, and I would hope right now that all of you are yelling at your computer screen calling me an idiot. For that matter, the guys, too. You all would be right. That party, I imagine, would have been epic, like the Hangover without the drunk wedding, naked Chinese dude, and Mike Tyson. Check that, Mike might have been there. And there might have been a tiger in the bathroom. The point is, I’ll never know.

There’s a valuable lesson here. No matter what your disability, don’t let it rule your life. Don’t let it dictate your every move. Don’t just play it safe. If you do, some of life’s most priceless moments will pass by like the sun fading into the horizon. Or a Tyson Beckford rager. From that day on I resurrected my mantra—No Regrets, MS be damned. And I haven’t regretted it since.

Tuesday, August 30, 2016

Failure is an Option

I stared at the kayak. “Oh, hell no,” my brain was telling me. I wasn’t worried about the paddling part—my arms can crank. But the getting in part, the staying upright part, the getting out part, and the whole not drowning part were an issue. Laura wanted to go, and suggested a tandem kayak would alleviate many of my concerns. My brain was skeptical. My brain, wisely, wanted to bail. And then, on the edge of a tiny lake in Colorado Springs six hours from home, my celebrity doomed me.

“Hey, don’t you do a blog?!”

Egad. Mr. ActiveMSer has been spotted contemplating waffling on well, being active.

“I love ActiveMSers, it’s so inspiring to see you getting out and doing what you can. It helped motivate me to climb a fourteener. You are awesome! I’m Meg, a longtime member with multiple sclerosis. It’s so great to meet you in person.”

Gulp. Totally busted. There was no way I could let Meg down now.

Okay, I reasoned with my brain, if Meg can do a fourteener (she even got a tattoo to commemorate the experience), I can attempt to kayak for a measly 15 minutes. So I went through my basic pre-kayak checklist: life jacket—check, paddle—check, behaving bladder—check (as much as one can check such things).

As I expected, getting into the kayak was challenging. But with a little help, I was off and paddling! That is, until I wasn’t. While my arms are great, my core (despite lots of training) puts the eh in meh. With my legs in front of me and no back support in this particular kayak, after a half dozen strokes I was admiring the puffy clouds directly above me in the sky. I discovered kayaking while lying on one’s back is rather impossible.

For the rest of our excursion, which was nearly a half hour, Laura did 98 percent of the work while I grabbed my legs to stay upright. If we got near shore, I’d paddle for a few strokes in the event a swarm of paparazzi (or just Meg) was going to capture my lameness for the tabloids. Oh, I didn’t actually care. Why?

See, earlier that day I played wheelchair tennis, a sport I feared would depress me, and just remind me of how I used to love to play the game and how I now had no business setting foot (or wheels as the case may be) on the court. Sure, I was terrible, but it was fantastic fun. Laura had to drag me off the court after nearly two hours. We even played doubles!

The point is, there likely will be times with multiple sclerosis that you fail trying to do something that the old you could do effortlessly. It’s important to realize that that’s okay. Heck, when you have MS, failure absolutely is an option, and an important one. Because if you never try, if you never experiment, if you never leave your comfort zone, then this disease wins. Screw* that.

While I enjoyed getting out on the lake on a beautiful day, I’ll try to kayak again with proper back support (and ideally an adaptive instructor). And I’ll get back out on the tennis court with a proper wheelchair designed for swinging the racquet and chasing balls. As for when motivation wanes and doubt creeps in, I discovered that you need to find inspiration wherever and however you can. This day it was a touch of serendipity, and her name was Meg.

*Note: my editor, aka wife, used this word to replace the more descriptive and vulgar word that I had originally chosen. Children, she reasoned, might read this. Meanwhile, I’m thinking kids have better things to do than to read blogs that contain words that rhyme with duck. While I always defer to her (always) better judgement, feel free to replace said word in your head for dramatic effect.