Set Those DVRs

* * * PRESS RELEASE * * *

Jason Picetti, aka ALS Boy, will be making his live television debut this upcoming Labor Day Monday, September 7, 2009. He will be appearing on the annual Jerry Lewis MDA Telethon, which is broadcast on KTVU, Channel 2 in the greater San Francisco Bay Area. He is scheduled to be interviewed between 2:10 pm and 2:40 pm.

When asked about what this opportunity means to him personally, Jason said, “I am very excited to be a part of such a venerable tradition like the Jerry Lewis Telethon. It means a lot to me to be invited to participate in this worthwhile cause. And besides, maybe my Z List celebrity status will rise to the D (for disabled) List as a result of being on the show.”

Joining him on the segment will be his wife, Fehmeen, and their 17-month old daughter, Emma. On the subject of being interviewed, Fehmeen had this to say: “Only my husband Jason would agree to an interview when he knows that he is no longer capable of speaking himself. I’m the one who is going to get stuck doing all the talking while he just sits there grinning like a cheshire cat. I swear, things always seem to work out for that guy.”

When asked about what she is looking forward to, Emma hopes that the studio has good “snacks”. She is also excited about showing everyone her “shoes” and can’t wait to tell everybody that she is Mama and Dada’s “hope”.

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ALS Boy Needs Your Help

How would you like to help me write my memoir AND decorate my office at the same time?

If you answered yes to one or both of those questions then you may skip the next sentence and go directly to the next paragraph to find out what you can do to help. If your answer was a no then you should take a moment to reconsider your response and join the rest of us in the sentence below this one. (Try highlighting the invisi-text in order to read it).

Here’s my dilemma: I moved into a new room/office/workspace at school this past Monday and despite the fact that it’s the perfect place for me to get some serious writing done, I can’t get past the depressing reality that the blank Word doc that is the current state of my memoir is almost as exciting and inspiring as the blank 8 ft by 5 ft bulletin board that stares down at me every moment I’m in there. It’s enough to make a guy feel all alone in the universe.

But it doesn’t have to be that way.

You can help me fill the blank spaces in my memoir and on my wall by sending me a postcard in the mail. Every time I accomplish something for my book, I will add another postcard to my bulletin board. Inspiration from the page will put pictures on my wall and inspiration from the wall will put words on my page.

But I can’t do this without you. I need you to send me a postcard from your hometown, from your current vacation spot, from wherever you are now and from wherever you will be in the future. Just please send me a postcard.

And it doesn’t even matter if you’ve read every word I’ve ever written or if this is your first time here, I humbly ask you all to consider participating in this project. Besides just being flat-out cool, it would mean a lot to me.

Send your postcards to:

Jason Picetti

P.O.  Box 112

San Carlos CA 94070

*** I have also written this address above the archives section on the right side of my blog. JP

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First Day of School

Yesterday was the first day of school at La Entrada.

In purely stereotypical terms, the first day of school means different things to different people. Students, for example, may verbally lament the fact that the summer’s over as they cheerfully interact with their fellow students and teachers. On the other hand, teachers may verbally lament the fact that the summer’s over as they cheerfully interact with their fellow teachers and students. Stay-at-home parental units enjoy the all-too-brief respite from their summer vacation that the typical school day brings. Even senior citizens are feeling the back-to-school vibe: There are way fewer skinny jeans-wearing, message phone-obsessed teenagers roaming around the malls these days.

For me, though, the first day of school represents something else entirely. In a time characteristically marked by a sense of renewed hope, unbridled optimism, and a fresh start, I can’t help but see the dawning of a new school year in somewhat less enthusiastic terms. Through my eyes, the beginning of school is symbolic of a period in my life when I ruled my little number-filled corner of the universe and when my words held the power to help unlock the middle school mathematical mysteries of the day. It symbolizes an era of professional joy, satisfaction, and creativity. These days, the first day of school represents the years I spent as a teacher and how, current circumstances being what they are (you know, with the ALS and all), I can never return to the front of a classroom again.

It’s not like I don’t miss it. I miss everything about it. And more.

I miss talking about math all day, every day. I miss creating and writing lessons. I miss grading tests and seeing that most of my students (thankfully) picked up at least a little something I taught them. I miss hearing my kids say, “Good morning, Mr. Picetti,” each day. I miss the privilege of getting to know each one of my students. I miss seizing that moment during class when the rest of the class fades to black except for me and that student struggling with a problem and slowly but surely we kick that problem’s sorry ass. I miss helping kids realize that math class doesn’t have to be boring or suck.

As much as I miss teaching, though, looking back on the first 366 days of my no longer being a teacher and the things I’ve learned about my friends, my family, my wife, my daughter, and most of all, myself, I know that the decision I made to call it quits on my teaching career was the absolute right thing to do, even if the first day of school is a bit rough.

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The Happiest AND Most Accessible Place on Earth

Emma’s First Visit to Disneyland

A Photoessay

Words: Jason Picetti   Pictures: Ameer Khan

Earlier this month, Fehmeen, her brother Ameer, Emma, and I piled into the proverbial Wally Wagon and made our way south down I-5 to Disneyland. And despite the fact that things got off to a less-than-ideal start (please refer to the stolen stroller incident), a magical time was had by all.

Much to our surprise, breakfast the first day included a photo op with several costumed characters. However, no one is as surprised, or as tense, as Emma.

At this point in time, we were all smiles. That changed upon receipt of our bill: $100, gratuity included, for breakfast for three. It wouldn't be the only crazy expenditure of the morning, either.

In an effort to lessen the tension with Emma, Minnie cozies up to her dad, the perma-grinning ALS Boy.

Taking her innocent flirtations to the next level, Minnie seems to have forgotten all about the camera. Luckily, Stitch rats her out.

Once inside the park, our first ride was on King Arthur's Carousel. Seemingly happy now, Emma's face told a vastly different story once the ride started.

There are about ten attractions at Disneyland that allow for a wheelchair-bound guest to literally roll across a ramp and onto the ride. This is one such example of me on the carousel.

Our next stop was the world famous Tiki Room. As Fehmeen likes to point out, despite the 39 year age difference between Emma and me, our reaction is exactly the same.

Hands down, Emma's favorite ride was It's a Small World. Watching her eyes bug out of her head with excitement as she floated through was the highlight of the trip for me.

Major props to whoever designed the sound for Small World. What a remarkable accomplishment to have one song playing over and over but depending upon where you are in the ride, you hear different things. For example, the music you hear in the middle of the ride is different from what you heard in the beginning yet the people in the beginning are hearing what you yourself had heard when you were there. By design, the song is no longer linear in nature but parallel. It boggles my mind.

Travelling by train to Adventureland minus our replacement stroller which Fehmeen left parked in front of Toon Town. Ameer picked it up later.

Cost of three ice cream cones at Gibson Girls: $12. Cost of the stylish hat atop my un-sunburned head: $85. Seeing Fehmeen's face unblemished by chocolate ice cream: Priceless.

"I had a great time at Disneyland. Thank you Mama, Dada, and Mamoo Ameer."

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Setting the Bar

On our first day at Disneyland, someone stole our brand new stroller.

Actually, that statement isn’t exactly accurate. Let me try again.

Before we even left the hotel for our first day at Disneyland, someone stole our brand new stroller.

Here’s how it all went down:

Because the four of us overslept a bit, we didn’t make it down to the breakfast buffet at the PCH Grill until after eleven AM. The restaurant, located in the lobby of the Disney-owned Paradise Pier Hotel, was remarkable only for the fact that the place was literally teeming with Disney characters such as Minnie Mouse, Goofy, and Lilo & Stitch. Once we were seated around the table, a waiter took Emma’s stroller and told us that we could retrieve it out front when we had finished our meal.

Well, we ate our Mickey Mouse-shaped pancakes, snapped a few somewhat inappropriate (on her part) photos of Minnie Mouse and me, paid an outrageously exorbitant amount for three adult breakfasts, and exited the eatery in order to make our way to the Magic Kingdom. Everything was as cool as the other side of the pillow until we came to the slow realization that our stroller was nowhere to be found, despite the fact that we were the last four turistas in the restaurant.

Fehmeen told the woeful tale of our absconded baby-transport to three different people: the breakfast supervisor, a uniformed security guard, and the restaurant manager. She spared no detail as she vividly described all the unique features of our $50 stroller that was purchased from Target exclusively for this trip. In the end, the best that Tracy, the manager, could do for us was to provide us with a voucher for a free stroller rental once we were inside Disneyland proper. We thanked her and headed off to the park.

During August, the Happiest Place on Earth is also the Hottest and Most Crowded Place on Earth as well. After about two hours of getting our Walt on, we were all ready to go back to the hotel. We returned the rented stroller and started the ten/fifteen minute walk through Downtown Disney to Paradise Pier.

Exhausted and overheated from carrying Emma, Fehmeen decided to vent her frustrations at hotel management. Just as she was about to get into it, the manager, Tracy, appeared and told her that she had a solution to our problem. She then presented Fehmeen with the exact same stroller that was stolen only hours earlier. Apparently, Tracy had her people go to Target and purchase our stroller and then, while we were gone, had them assemble it as well.

So, how cool is that? I’ll bet you didn’t see that end coming, didja?

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Watsu

I am floating.

Not in the sky on a fluffy white cloud. Not in the vast and empty blackness of space.

I am floating in water.

F   L   O   A   T   I   N   G

My heavy and uncooperative body made buoyant by a trio of devices attached to my legs and neck.

At first, I am a stiff and brittle branch, laying lifeless and rigid on the surface of a stagnant, neglected pond in some bland and dreary suburban cityscape.

As I struggle to stake my claim in this new universe, I recall my five word set of instructions for this exercise:

Just relax and let go.

Just relax.

And let go.

I close my eyes and give my body permission to disagree with my brain’s commands to remain active and alert.

R     E     L     A     X

L

E

T

T

I

N

G

GOOOOOOOOOoooooooooooo……

It’s easy once you make the commitment. That pledge to the incomprehensible state of do-nothingness.

F L O A T I N G

I feel the soothing splash of water in my ears as the voices of those around me transform into near-inaudible murmurs. Somewhere, high above me, music is playing. Soft and sweet.

My body sways in perfect time with the gentle, undulating current as I begin to revolve around a not-so-imaginary axis. Spinning simply, spinning slowly. My arms and legs extend without the typical effort-full fanfare and bravado. Forgotten muscle memory suddenly remembers.

Without a hint of self-conscious realization, I have metamorphisized into a verdant strip of vegetation being whisked across the crystal clear surface of a lush, cascading river.

F   L   O   A   T   I   N   G

F L O A T I N G

floating

…

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Snapshot

On the personally momentous occasion of this being my ONE HUNDREDTH POST on this blog, I have decided to celebrate the event in a manner befitting the nature of the medium. Rather than having to rely on my vastly overworked and woefully underpaid memory for this information at a later date, I am going to provide you, dear reader, with a current snapshot of my baby girl, Emma, at age sixteen months. It is my intention in doing this, should Emma ever ask what she was like as a baby, that she can find her way here and read all about it.

Fave Foods: toast, rice, vegetables, pizza, cheerios, veggie dips, grapes, ice cream, popsicles

Fave Drinks: warm milk, apple juice, water

Fave Toys: comcast remote, Nani’s cell phone, Gama’s paperback, barking dog, purple Tinkerbell chair

Fave Animals: dogs, cats, birds, aflac duck

Can’t Live Without: her blanket, her Pengie

Constantly Says: mama, dada, papa, hi, snacks, blanket, high five, boong yah, fan, sit, uh oh, no, emma emma emma, more, thank you

Enunciates Well: hard consonant sounds at the end of words like hat and sit

Able to Identify Her: nose, cheeks, eyes, hair, head, ears, teeth, tongue, molars, tummy, toes, butt butt

Can Perform on Command: put such and such in the garbage, wipe dada’s mouth

Fave Band: The Wiggles

Fave Non-Wiggles Songs: Tequila, Meow Mix song, dogs barking Jingle Bells

Current BFFs: Auntie Sarah and Cody, the neighbor dog

Fills in the Blank: Emma is Mama and Dada’s hope.

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And Here’s Why

As we drove around in our new (Toot Toot Chugga Chugga) Big Red Car Van the other day, Fehmeen asked me the following question: If you had to assign a number to the life you are living right now, with 10 meaning absolute perfection and 1 representing overwhelming despair, what number is your life?

I mulled it over in my head for a few moments and when the noise of traffic had diminished enough for me to audibly speak over it, I announced to my wife of three years that my life was currently an 8.

She nearly drove off the side of the road when she heard my answer.

And since my verbal capabilities are being bested by my sixteen-month-old daughter these days, not even Fehmeen knows how I arrived at an 8 for my number.

First of all, my having a progressive and terminal (and as yet cure-free) disease like ALS immediately drops my number to a 2. I can’t lie to you; having to rely on everyone around  me for every single thing I need pretty much sucks.  Mix in extremely limited mobility and a near-complete loss of speech with a typical post-diagnosis lifespan measured in years not decades and I believe that I’ve justified that score of 2.

However, I added 1 to my total for the talented and loving team of specialists I see on a weekly basis. Kind and nurturing souls like Jen for acupuncture on Mondays, Dr Ken for chiropractic on Tuesdays, Robin for physical therapy on Wednesdays,  Morgan for hydro therapy on Thursdays, and Charles for medical qi-gong on Fridays help keep my rapidly deteriorating body humming along as smoothly as humanly possible.

Next, my number increased by another digit thanks to the generous outpouring of support of the La Entrada parent/student/colleague community (as well as my family and friends) which helped us convert our bathroom into a fully accessible work of art.

I added 1 to my number for all the selfless and supportive friends that have rallied around me and my four wheels. Friends like Dan (thanks for the awesome looking DVDs), Rob (I appreciate your stories and for the fact that you still treat me the same way you did before all of this), and the Hen (I enjoy our trips to the beach, the movies, the club, and the hospital) always succeed in brightening up my day.

Then, I bumped up my total by another 1 for my ever-present family, especially my Mom and Dad. Although I don’t excel at showing it as often as I should, I truly appreciate all the things you two do for me. I love you guys.

Next, I increased my number by an additional 1 for the force of nature that is Fehmeen. She holds my hand when it needs holding, encourages me when I need the encouragement, and kicks my ass when my ass needs kicking. I am the socially presentable person you see on a daily basis in no small part due to her diligent and tireless efforts.

And finally, I added a final 1 to my total for my beautiful baby girl Emma. It is her face and smile and voice and spirit that I wake up to experience every single day. Watching her grow up in these first sixteen months of her life has personally motivated me to be around for at least two-hundred forty more.

And that’s why I’m an 8.

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