Five Days in Michigan

Hey everyone. Long time no post. Completely my bad. You see, after our five day vacay in Michigan, I took the next three days getting back into my old routines and appointments. I also spent some time acclimating myself to our new van, laptop, and weekly water therapy sessions. (More on that stuff in future posts, I promise). But now, before I forget, I present to you Five Days in Michigan through the eyes of ALS Boy.

• Congratulations to Amaan and Missy on your spectacular weddings. It was great to see you two again. Sasha, you look incredible and I draw inspiration from your upbeat spirit and exuberant attitude. Thank you, Shahida, for being an affable hostess.  And finally, Chuck, the garden looks great.
• Have you ever seen an airplane aisle wheelchair? After being strapped, belted, and shackled to one on at least three occasions, the only things missing from completing my transformation into Hannibal Lecter were a bottle of chianti, some fava beans, and one of those no-bite masks.
• Why did three women, a baby, and a man in a dying wheelchair cross a busy, eight-lane thoroughfare? To get to Little Daddy’s restaurant, of course. Opa!
• If I never eat at the Unique Deli again it will be much too soon. At least I found out that my mother-in-law is quite the generous tipper.
• I dare you to find a foreign car driving around the greater Detroit area. I couldn’t.
• As Emma sat on my lap in the airplane on our return flight, Fehmeen handed her the non-verbal, laminated flight safety pamphlet. Noticing that the manual was upside down, Emma flipped the card over so as to better read/see the pictures. I was blown away by her attention to detail. She starts War and Peace next week.

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Maybe It’s Just Me

Maybe it’s just me but why do I feel like the last person in the industrialized world to notice the arrow “hidden” in FedEx’s logo. If you don’t know what I’m talking about, look for it the next time you spot one of their trucks on the road. Once you find it, you won’t be able to NOT see it the next time.

Maybe it’s just me but I felt the slightest tinge of sadness this morning as I took one last ride in our Honda CRV. Next week, I will quite literally be rolling in and out of a fully converted Dodge Caravan.

Maybe it’s just me but I am still quite annoyed by a comment that was hurled at me and two others. After enjoying a Sunday afternoon movie in Fremont, my brother-in-law, Ameer, 21, his cousin, Safa, 19, and I, 40, were about to begin the process of transferring me from my wheelchair into the front passenger seat of my CRV. In the blue marked spot to our right, which was also separated by the now-familiar cross-hatched white lines, was a middle-aged woman exiting her vehicle. As she walked towards the theatre, she spun around and yelled at us, “Don’t scratch my car!” The three of us were rendered speechless (some more temporary than others). After we piled into our ride to depart, I made a promise to myself to grow claws like Wolverine so that in the event I ever encountered the same red Toyota Solara with license plates 6CLX445, I would know for certain that she was directing her unfounded paranoia at me.

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An Apt Analogy

How long does it take to watch yourself go bald? Is it something you notice over a period of either years or decades or do you all of a sudden look in the mirror one morning and say, “Oh crap, I’m bald?”

What about gaining weight? Is it possible to keep tabs on your ever expanding waistline or do you just one day notice that you have dick-du (a common condition that manifests in men when their gut sticks out more than their dick do).

I ponder these questions because every day I am forced to confront, step by step, what having ALS has done to my mobility. Two years ago this coming August, I was running the bases and roaming the outfield at a weekly softball game but as of this morning, it took me eight minutes to walk from my bedroom to the garage. In the short span of twenty-three months, I have gone from walking normally to carrying a cane to actually using the cane to holding someone’s hands as they walk backwards in front of me.

Twenty-three months.

If I had to speculate as to when I will no longer be able to walk any more, I couldn’t give you a satisfactory answer. I can tell you though, with a high degree of certainty, that I have a fairly thick head of hair.

And I was told by my doctor to gain weight.

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You’re Welcome

Since my arms lack the strength to lift her and my legs are no longer strong enough to chase after her, I have to be creative in the ways that I can play and bond with my baby girl Emma.

One of our most favorite activities is to watch Youtube videos together. She sits calmly on my lap for upwards of 45 minutes as we watch Wiggles videos until our eyes bleed.

The always musically adventurous Emma has even allowed me to pepper her personal playlist with artists as diverse as Leo Sayer, the Champs, and War.

However, the song that sits atop her current hit parade is an underappreciated little gem of a ditty that everyone knows. Click here to watch the video.

And yes, you’re welcome.

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Shhh, Don’t Tell Lou

My family and I attended the July 4th Giants/Astros game at AT & T Park this past Saturday. It was a momentous occasion for several reasons: Emma’s first game, my first game on four wheels, and Fehmeen actually said that Tim Lincecum was a great pitcher (which was unexpected because she would rather stick needles in her eyes than pay attention to baseball).  But the main reason we went to the game was to be a part of MLB’s celebration of the 70 year anniversary of Lou Gehrig’s farewell speech in 1939. For the record, the Giants organization did an excellent job at raising public awareness about ALS with a tasteful pre-game ceremony.

Later that evening as I was watching Baseball Tonight on ESPN, they took a break from the day’s highlights to turn the spotlight on Lou Gehrig and his two year fight with the disease that would one day bear his name. Apparently, Gehrig’s wife and doctor decided to keep his diagnosis a secret from him opting instead to allow him typewritten correspondence with the doctor discussing the chances of his getting better. They reasoned that the terminal nature of ALS would be way too demoralizing for him to handle.

Personally, I am glad that I have been afforded the courtesy of full disclosure of the disease that I am fighting. That simple knowledge has allowed me to properly prioritize the way I now live my life. I wonder if Lou would have done things differently had he known.

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A Dollar’s Worth of Memories

Back in the day, after we completed his afternoon paper route, my friend Sean M and I would pedal our bikes up to the neighborhood 7-11 on San Bruno Avenue. We would park our Mongooses (or is the correct term Mongeese) and head into the convenience store. Dollar bill in hand, I would belly up to the counter and order my usual Dr Pepper Big Gulp. The thirty-two ounces of sugary caffeinated goodness would set me back 59 cents plus 4 cents tax for a grand total of 63 cents. Twelve of my 37 cents change would find a new home in the linty depths of my front pants pocket while the quarter would be inserted into the coin slot of the Galaga or Gyruss video game near the double glass doors. We would sip our drinks and shoot at wave after endless wave of insect-like alien invaders until it was time to ride home for dinner. Tomorrow would come and we would do it all over again. Maybe this time, one of us would get a high score.

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On This Date

The following events have occured on this date:

July 1, 1963   ZIP codes are introduced in the United States. This development frees up a lot of time for Cliff Claven and Newman.

July 1, 1967   Pamela Anderson is born. Teenage boys the world over rejoice.

July 1, 1979   Sony unleashes the Walkman on consumers. Remember how cool and high tech those were at the time?

July 1, 1995   Wolfman Jack dies. His trademark voice lives on in the film American Graffiti.

July 1, 1999   Marvin Benard goes 2 for 5 with a double and Shawn Estes pitches 8 innings as the Giants beat the Rockies 7 to 1. Somewhere, Mike Beusch is muttering to himself and rolling his eyes.

July 1, 2006   Jason Picetti and Fehmeen Khan are married in a traditional Nikkah ceremony. The non-traditional dowry of Starbucks gift cards are exchanged.

July 1, 2009   Emma Picetti celebrates her fifteen month birthday. Happy 1.25, Bug!

July 1, 2010   Jason “ALS Boy” Picetti’s critically acclaimed memoir maintains its perch atop the New York Times’ bestseller list. The author credits his decision to publish shorter blog entries and to spend a few hours per day on fleshing out his nearly completed outline of the life-spanning project for his success.

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