when uniform & rhythmic is wrong...

most of us are raised to believe in a natural order of things. we believe there is a rhythm and a back-beat that everything is pulsing in concordance to. phi, the divine number. the golden ratio. the divine proportion. mathematics teaches us that certain uniform standards repeat over and over again. we can witness this in nature. in religion. in the arts.

but what about when chaos is the norm?

i, along with approximately 3 million other americans, have epilepsy. a part of my brain kind of goes into spasm, and creates wave after wave of neurological connections. the problem is that the brain is meant to behave randomly. the sharp, jagged, messy lines of an EEG are the norm, as we are messy and complex beings. the sharp, rhythmic, syncopated spikes on an EEG are evidence of a disorder.


but when you tell people that you have epilepsy, the first thing they offer to do is to shove a checkbook in your mouth if you go into convulsions. um, folks? this is very VERY wrong. stay away from my mouth. i have a form of epilepsy that never has a single convulsion. so back off! and even if i did have convulsions, the well meaning folks who want to pry your mouth open and shove stuff in it under the misguided belief that they are keeping you from swallowing or biting off your tongue -- they tend to do more damage than good. by and large, your frenulum (how's that for a college word!) is the membrane that keeps your tongue from falling down the back of your throat. okay, technically when you are unconscious your tongue can fall to the back of your throat and block your airway. but i'll risk it.

if i ever do have a convulsive seizure, i have more faith in my frenulum than in your checkbook.

having epilepsy doesn't have much of an impact on me. i stay away from strobe lights, and thus will never see the Blue Man Group perform, and i can't go see the Big Apple Circus. i can't donate blood in most states, even though epilepsy is not a blood born disease. i need to have a note from my doctor that states i am safe to drive. and if i don't take my medicine i can see and hear things that aren't there, and everything starts to taste like sterno.

i have taken drugs for this condition for the past 13 years.

the meds make me groggy. make me gain weight. damage my skin. make me terribly likely to develop a sunburn. make me heat and cold intolerant, like a little lizard. they can mess with my sleep and my alertness and can make me feel a little muddle-headed. if i didn't have health insurance my epilepsy medications would be costing me $480 a month. for one prescription. that doesn't even have a street value. no inner-city kids are popping handfuls of neurontin for fun.

but i take them like clockwork.

i take them to keep my brain messy and complicated, like nature truly intended.


behind the scenes at Extreme Makeover: Home Edition

(WARNING: for those of you who really really care about the show and cry every week, you should probably stop reading now!)

for the last week or so, my work has been overrun with do-gooders in blue shirts and hardhats. in their quest to build a house for somebody in every state, Extreme Makeover: Home Edition just finished up a house in Maynard, MA. Paul Giunta was severely injured in a car accident when he was driving home from the hospital where his wife had just given birth. he was paralyzed and has been living in a house that can not accommodate a wheelchair. Paul Giunta was forced to live with his parents since getting out of the hospital, while his wife raised their three kids in their non-accessible house.

the Giunta's live just down the road from the lab, and the empty lots around us were used as staging areas for the over 500 volunteers and contractors who came to tear down the old house and build the new.

i learned a lot about the show just by sitting on the sidelines, chatting with the security guards, and secretly letting some of the crew use our bathroom.

having EM:HE come to town is a bit like having the circus come to town. everybody dresses up in their finery (matching t-shirts and hardhats) and their is an infectious aura of good will. huge trucks roll in non-stop. many are delivering, or removing, building supplies. but some bring soda to the volunteers (pepsi and coke both came), some bring things the family will need (an entire truckload of lands-end clothing), many bring the media, both local and national, and tour-buses and a fleet of golf carts drive the spectators and VIP's to and from the build site.

needless to say -- it's chaos.

some of my staff were devastated to get a behind the scenes look at the show. it had never occurred to them that they would do the "surprise early morning door knock" more than once. i think they did it five times, over two different days. ditto with the trademark "MOVE THAT BUS". they often bring in a fake family in a limo to get the shot just right. and they move the bus a few times.

to me, this was as expected. this is, after all, pageantry. but to my staff, it was a little like learning that there is no santa claus.

what did surprise me, however, was the length EM:HE went to include the entire community. the goodwill is genuine. and in a country where people are jaded and sarcastic, everybody was genuinely happy for the Giunta's. So they did the bus trick a few too many times. at the end of the day, a family that has seen hard times got a new handicap accessible house. the neighbors who put up with the mess and the noise and the chaos? they all got presents. every neighbor was given either new appliances from Sears, or cold hard cash. it's hard to begrudge those around you when you hear the hum of the ice-maker in your new stainless steel fridge. the show planted one of their security guards at the entrance to *our* parking lot, just to make sure that our meager parking wasn't poached by onlookers. and over 50 different local tradespeople were given a part of the project, so at the end of the day, even though workers and security and staff were bussed in by the truckload, we could all feel like we were part of a little Home Makeover magic.

many congrats to the Giunta's. we wish you all the best.