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.)