The Adventures of ALS Boy

A middle-school math teacher documents his joyful life while battling the evil forces of ALS.

I've Got a Lot of Problems

Not necessarily handicap accessible

Last Friday (January 2009), Fehmeen and I attended a speaking engagement at Foothill College. The event, hosted by the philanthropic group Trust in Education, featured Khaled Hosseini, author of The Kite Runner and A Thousand Splendid Suns, in a discussion with Trust in Education founder, Budd MacKenzie. Their conversation centered around MacKenzie's groups mission of "Bringing Education and Economic Development to Afghan Villages." For more information on this amazing group, please visit their website.

While the dialog between the two men on stage was compelling and informative, it didn't measure up to the intensity of the scene that played out between a handful of individuals during the hour prior to the event. That's when the real drama went down. The following is a list of keywords and phrases to be on the lookout for as you read this story: handicapped parking, stairs, emergency telephone, one-way street, and a ride in a cop car. Oh yeah, there is also a brief appearance by Fehmeen's sister, Farah, towards the end, as well (so maybe she'll stop meowing at me to include her in my blog).

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Fehmeen and I arrived at the community college campus approximately fifteen minutes before the pre-event reception for which we purchased tickets was about to begin. Since this was our first time visiting Foothill, we had no idea where we were headed. All we had was a name, Smithwick Theatre, to guide us. As luck would have it, the very first sign we encountered informed us that the theatre was thataway. So thataway we went.

A mere hundred yards later, we arrived at the Smithwick parking lot. Great, that was easy, except for the fact that the actual theatre was about a thousand feet away at the top of an uphill pedestrian pathway. There was no way in hell, short of attaching a six cylinder engine to my back, that my wheelchair was going to make it up that steep of a grade. Time for plan B.

Since we were still early, we decided to try driving on the road directly to the right of the path to see if it led to the theatre. It did, sort of. We ended up parking in the only blue handicapped space in the small lot at the rear, backstage entrance of the Smithwick. Whew, what a relief. Fehmeen exited the Honda to find the path inside for me and my chair but returned minutes later finding none. The rear entrance was on an inaccessible three foot platform and the front entrance (we assumed) to our right was atop a steep flight of about thirty stairs. Enact Plan C.

Before Fehmeen ascended the cement stairway (presumably) to the theatre, she noticed one of those campus emergency phones on a pole near our car. She lifted the phone from it's cradle with the intent of getting some guidance on our rapidly escalating accessibility issue but when no one picked up on the other end of the line, she hung up and made her way towards the stairs while I waited in the car.

She returned five minutes later with a student volunteer in tow. As he hopped into the backseat of our CRV, Fehmeen explained to me that this kid knew the way to the promised land, the fabled front entrance to the Smithwick Theatre. He guided us to the right of the staircase and onto a two lane road which apparently circled the campus. About thirty seconds down the road, we spotted the theatre, up a hill, to the left, just past a busses-only road.

Rules be damned, Fehmeen drove on the bus path, up the hill and parked on a flat driveway about three hundred (level) feet from the theatre. She unloaded me, my chair, and the student and drove off back to our blue parking spot backstage. My instructions were to wait for her to return from parking the car.

I waited for fifteen minutes with no sign of my wife. Dozens of well dressed guests strode past me on their way to the pre-event reception but no Fehmeen. Just as I was about to get worried about her, she showed up with a wild look in her eyes. Before I could ask her what happened, she told me.

After she dropped me off, she drove the car back down the hill. When she got back to the main two lane road, she made a right hand turn. Almost immediately, she heard the sound of car horns honking. It seemed as if every car that approached her blasted her with their horn except for one car. That one car was a cop car and it pulled her over.

When informed by the police officer that she was driving the wrong way down a one way street, all Fehmeen could tell the cop was how not handicap accessible the campus was. The cop asked her if she was the one who had made the emergency call and she responded with a yes which led to the cop asking her if she had a problem which elicited the now classic response of "I've got a lot of problems" from Fehmeen.

Fehmeen then proceeded to tell the cop the story of me being diagnosed with ALS while she was pregnant with Emma and instead of getting a ticket, Fehmeen got to ride in the police car back to the theatre along with a flyer to park the car wherever she wanted without the risk of a parking ticket. I guess crime, at least a moving violation, does pay when you have an airtight alibi in the form of ALS Boy.

After the tear-free reunion, we managed to survive the reception without incident. It wasn't until we entered the actual theatre to find our seats that we encountered the final obstacle on our quest for total accessibility. Halfway down every aisle in the Smithwick were two stairs. An alternate route to our assigned seats in the sixth row was needed asap.

Fehmeen located another student volunteer who told us about a ramp located just outside the side of the theatre. Farah, who had arrived with several other members of the Khan clan during the reception, held the door as I rolled my way down the ramp towards the area where our seats were located. Once we were all seated, the lights dimmed and the event began.

 

Jason Picetti lived life with ALS by six simple words: Speech and movement compromised, spirit unaffected. He died on October 2011.

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