Tuesday, July 23, 2013

To Go, or Not to Go, That is the Question


Oh, my dear Hamlet, you never had to make the difficult decision of whether or not to go on holiday because your multiple sclerosis was acting up. When I was getting diagnosed in the fall of 2006, I promised my wife Laura that I would take her to the one country that we both had at the top of our wish lists, and a country that had so far eluded us on our world travels: Italy. But then other more intense adventures intervened because of my diagnosis: climbing Mayan ruins in Guatemala, snowboarding the Canadian Rockies, camping in the Sahara, glacier trekking in New Zealand, elephant riding in Thailand, and hiking in the Himalayas of Bhutan. Designs to go to Italy had quietly simmered in our imagination until the spring of 2009 when we began, finally, to plan in earnest.

Ah, but multiple sclerosis can be like a huge pimple--the one that magically appears on a forehead right before prom, screaming for attention at the most inopportune time. Days before our fall 2009 departure I had a good stumble and I could sense my legs were going to continue not cooperating. They’d been in a funk for months and it was only getting worse. The night before our transatlantic flight, our bags standing at attention by the front door, I wondered aloud to Laura if we should postpone our dream vacation. We had travel insurance; we could cancel for any reason. If we went, it would be hard. I’d need lots of help, and she’d need lots of patience. But if we did not go, it could be a decision that we’d regret for a lifetime. Amid salty tears, we decided that MS was just too unpredictable and that, yes, Italy couldn’t wait. No regrets. It was a smart decision. Click here to read how we seized the day.

Originally published December 22nd, 2009, edited for clarity.

Thursday, July 11, 2013

MS Torture Chambers


I don’t actively seek out MS torture chambers when I travel. Honest. They do, however, seem to find me. Like that sweltering hammam in Morocco that made me see cross-eyed and vanquished my legs. Or that cave in South Dakota where a misplaced fatigued step could have had me leading off the local newscast (“Stay tuned, as a stubborn gentlemen with multiple sclerosis attempts to win this years’ Darwin Award”). Or that misguided full-bladder tour of Notre Dame, apparently the most popular tourist site in the world without a bathroom closer than a half mile away. Oh yes, I’ve got a knack for putting myself into distressing situations that inevitably challenge me with this disease.
But strolling around an art museum?
No, I’m not talking about when I was literally stepped and tripped over by a mob of tourists trying to photograph of piece of art at Russia’s famed Hermitage museum. Granted it was a da Vinci. And when you are in a wheelchair it is disconcerting to have people straddle your legs, their rear ends inches from your face, in order to eke out a slightly better angle to take what will no doubt be a crummy photograph of a brilliant painting. But no, not that. It was in a single dark room in the basement of Hamburg’s Kunsthalle in the Gallery of Contemporary Art.

I’ve never been able to completely explain to others what it feels like to experience that sort of sensory overload that can come with having this disease. When loud get-togethers or overcrowded restaurants or rowdy sporting events cease to become enjoyable and just overwhelm to the point where all you want to do is escape. Until I saw Bruce Nauman's video installation Anthro/Socio (Rinde Spinning).
Three floor-to-ceiling projection screens and six monitors show close-up images of a bald man’s head dizzily spinning around—right-side up, upside down—as he loudly demands in an unbroken, relentless loop: “Feed me / Eat me / Anthropology”, “Help me / Hurt me / Sociology” and “Feed me / Help me / Eat me / Hurt me”. It’s assaulting, it’s disturbing, it’s never ending. Focusing in all the cacophony as the giant heads rotate all around you, one even projecting on your chest and shining into your eyes, is all but impossible. That is what it is like when your MS brain gets bombarded to the point of overload. It’s all those things that make you want to run out of the room, to escape. Anything to give your brain a moment of relief.
So the next time someone labels you as a party pooper or unsocial, try this little experiment. Round up a half-dozen laptops and place them inches from the accuser’s face. Then play them this video. On repeat. Loudly. For an hour. My guess is that you’ll get a sincere and sheepish (“I didn’t understand”) apology in short time.