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.

16 comments:

Anonymous said...

(nodding the whole way through the read) Yes, yes... (then clicks on the link for the video) Aye Yai Yai! That'd do it. I'm nauseous now. Thanks for that. ;)

Anonymous said...

That's a good one. I have a teen who likes to video game and skype with several friends at the same time,while somehow asking me a question. I just want to run away from home! Sensory overload is a huge issue for me! Great post,very much appreciated -Susie

Milliepede Loftus said...

This is the best example of what it feels like. I'm sending your blog to my boss at work. Thank you for your humourous insights - while getting the point across.

Lyla said...

...... wow! Glad you're back safe and sound and can still put coherent sentiences together. :-)

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

Debbie E. said...

And here I thought I was the only one suffering from sensory overload sometimes.

Dave Bexfield said...

Sorry for making anyone too nauseous. The whole MS sensory overload experience is hard to explain (like fatigue) but that video really does the trick. Thanks for all the nice comments.

Anonymous said...

Yes! 'Hard to explain' that's exactly it! .. I have trouble explaining it to even the closest of my friends and family!
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

Dave Bexfield said...

Irene, be careful watching that video. :)

My MS Walk said...

I'm not even going to watch the video; I can't even make it through the store without my head spinning. I purposefully try to avoid situations where I know I will have issues, however it cannot always be avoided. In times like those, I really have to 'talk to myself in my head'. "It's ok. You'll make it through. Don't panic. It will be over soon." and so on.

I appreciate your humor and accuracy. Thanks for the post.

Dave Bexfield said...

Understood, My MS Walk. Appreciate the input and personal experience.

MrsBob08 said...

Hey Dave,

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 : )

Estizer Smith said...

Dave,things that I used to enjoy are now a nightmare. Check out my Blog Post on "The Farmers Market."
http://msopenmic.com/2013/09/02/the-farmers-market-2013/

Dave Bexfield said...

Thanks Estizer. I know just where you are coming from!

Dave Bexfield said...

And MrsBob08, thanks for the nice comments. Hope to see you on the road!

Anonymous said...

Read your travel tips.... any tips for those not in wheelchairs!!!!?!!? Have had MS since 1987.....a true blessing.. :).......on re bif and Ampyra........ Attitude is everything

Dave Bexfield said...

Anon, I'm not sure I understand. Most of my tips don't involve wheelchairs, in fact I had so few tips for those who roll had revised them recently to better accommodate more forms of disability.
http://www.activemsers.org/tipstricks/travelingwithms.html