Friday, April 16, 2010

What is Disease? Letter to the IAFF through MDA

Firefighters of the Eastern Region!

It is a beautiful spring day! The sun is shining brightly and a cool breeze blows. In this moment, it is so easy to look at our lawns and forget that not so long ago they were buried in over four-feet of snow, and it is so easy to look up at the leaves budding from the shade trees and forget that in the not too distant future we will be cursing brutally at all of those bags of fallen leaves.

My son, Joby, has Duchenne Muscular Dystrophy (DMD) in much the same way that I have brown hair or you are a firefighter: My hair is not even a thought until I need a haircut, and you are a friend, a neighbor or a stranger I do not even see in passing until my house is ablaze and my children are trapped. But when the sun is beating down, all I can think about is that haircut, and when the flames rise, all I want to see is firemen scrambling to save us. Like this, Joby’s disease is not a disease until it is.

Last summer Joby could walk perhaps a half-mile with us at a very slow pace, and as a family we adjusted and enjoyed. Autumn came and winter left. Now it is spring, and the family itches to walk, but Joby tires after 100 yards. There it is: the disease appeared. Now we remember the past two-mile walks, the climbing on the playground, tossing the ball, swimming in the pool, …; now we see forward to rapid decline, the remodeling of the house, the power wheelchair, the handicap plates, the van with the lift…

But just last week, when we could not afford one of our own, the MDA through their “Equipment Loan Closet” program lent us a manual wheelchair to use for as long as we need it. This simple luxury for my son would cost, I estimate, between $300 and $500 that we simply did not have. One day we sat on the couch watching the sun set, wishing. When the sun rose, we “walked” three miles as a family again, grateful.

They say this disease has no cure, and today that is true—but it is not entirely true. On that one spring day, my hair was not brown, my house did not burn to the ground, and no one in my family suffered from this disease.

In the fall, we will sweat and suffer through days of bagging millions of little leaves, wondering how they can fill so many bags. We won’t likely remember that these were the leaves that were so beautiful today and gave us shade tomorrow. We won’t likely consider how the leaves will be transformed to new soil and new life later outside our sight. But last summer you and your men and women suffered under the brutal sun in your uniforms collecting pennies, nickels, and dimes like beggars from people who would look the other way. This year, though, out of your sight, our family walked around a lake— together—for the first time in two years! That was your autumn; this is Joby's spring. Now, this will be our summer: Joby will attend his first MDA Summer Camp program, likely with many of you present! Know that no child there or family here suffers from disease during that glorious week.

With warmest regards and sincere appreciation for all that you do, ...

Thursday, April 15, 2010

Fairfax Zen and The Monster's Shoes

"I'm scared..." I said.

"Of what?" she asked.

"I saw a monster in the hall."

"There's no monster out there!"

"I saw it! Right there! Behind you!"

She spun around 180-degrees, paused, and then again. "I didn't see a monster!"

"It's true! I saw it! It had brown hair, and it went that way!"

She jumped out of the room and ran down the hall in the direction I pointed, came back, and reported still not seeing the monster.

"I'm telling you, it's there right now! You really don't see it? Go take another look; I see it!"  And she did, and standing in the hall she turned to me, opened her mouth to speak, and...

I interrupted: "What color shoes is the monster wearing?!"

She paused.  She smiled.  The six- or seven-year-old brunette looked down toward her feet...


Not bad!  Not bad at all... But she might have seen my own sneakers were white, or even gone a step or two beyond...

No matter---right afterward she giggled, ran up and punched me in the nuts.

There's at least one Zen master in the making at the new Fairfax Zen Group. If you're in the area, you might be the next!

Wednesday, April 14, 2010

Dana: Generosity

When you inhale, does it serve only you, or does it serve all of the universe? When you exhale, does it serve only you, or does it serve all of the universe?

You exhale, you piss, you shit, you ejaculate---the universe consumes it and thrives. When a tree or the sky or the sea does the same, you consume it and thrive.

Everything is like this.

Would you consider not exhaling now for fear that someone, somewhere, who does not in your mind deserve it, might benefit from your breath? Would you consider not inhaling now because, in spite of air being made available to you, you are too proud to accept it from its source?

Everything is also like this.

The sun rises and sets for you alone, it is true, but do you know who you are?

Air, water, sunlight, blood, food, money, ... All of these things cycle and flow. And through our own will, some will hoard and refuse to give, some will share, some will suffer and refuse to accept. At some point though, your body and the bodies of the others will be reclaimed, because they are part of the cycle and flow, too. You will not inhale again. Your heart will not pump again. Your money will not stay in place indefinitely.

But still, you thrive.

The universe is perfect as it is. Every alternative universe is also perfect as it is. But what is the difference between them, between what you want, what you expect, and what you see, what you experience?

Who are you?