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.
Comments
I had an episode of MS brain overload this week, and I was merely standing in a hallway at work talking to someone! Amazing video! I will use it to explain how the sensory overload feels.
Lyla B
They think I'm not motivated/interested or trying hard enough! While sometimes it's true that everything feels better when I'm in a better mood.. it's not so easy and I have no control over what's coming next! (I haven't watched the video yet!)
Irene
I appreciate your humor and accuracy. Thanks for the post.
Like you, I love to travel, and I absolutely refuse to let MS stop me from seeing as much of the world as I can. But it is sometimes incredibly difficult for me to explain exactly how the fatigue of traveling affects me. From now on, I'm just going to carry a copy of your post with me and pull it out whenever I don't know how to get my point across! Thank you so much from a fellow MSer : )
http://msopenmic.com/2013/09/02/the-farmers-market-2013/
http://www.activemsers.org/tipstricks/travelingwithms.html