Archive for June, 2009

Three Pics

I will spare you the excess verbiage and let the following three pictures speak for themselves.

Except when I include a caption but that’s it.

w mama

w dada

Rockin' a look created by her Auntie Alia, Emma combines a fashionista's style with frugality ($1.50 for the shirt).

Rockin' a look created by her Auntie Alia, Emma combines a fashionista's style with frugality ($1.50 for the shirt).


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Quick question for you:

Is there a word for not being able to find the right word to adequately describe an experience?

The only reason I ask is because as I struggle mightily to nail down that perfect word to explain what happened to me this past Saturday night, I find my mind meandering down etymological avenues in search of a word or even a phrase that encapsulates the narrow and hyper-specific phenomenon I most likely may have never even considered pondering in the first place had I not been so deeply engrossed in the not-so-leisurely activity of that which, as of the time of this posting, has no discernible name. 

But I digress.

And I apologize for that last sentence. 



As I was leaving my cousin’s wedding Saturday evening, I rolled my electric wheelchair onto a small platform lift adjacent to a small set of stairs. As the single-rider elevator slowly travelled vertically towards the cement pathway above, I couldn’t help but notice the complete lack of maneuverability my wheelchair was afforded due to the claustrophobic confines of the box-like enclosure I was sitting in.

Approximately halfway through my ascent, something akin to a switch flipped on in my mind and the world as I saw it, and as the world saw me, transformed. No longer was I some guy with a progressively debilitating terminal illness sitting on a wheelchair but rather I was a brashly arrogant, invulnerable young cowboy bull rider strapped by his wrist to a nine-hundred pound behemoth, who was not especially thrilled to be locked in this make-shift cage with a hundred sixty-five pound distraction on his back.

As the snorting and drooling beast began to grow impatient with his current state of captivity by attempting to kick and buck his way out of the metal box that held him, the front gate of the cage slammed open with a clang. But rather than roar and growl out of the bull chute atop a nearly half-ton widow maker, I was jolted back to reality by the whirring of the motor of my trusty wheelchair as I began the docile roll back to our hotel.

So, any thoughts on that word I was looking for?

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Boong Boong Yah

Wake up in the morning with my butt in the sky

What begins as a babble turns into a fake cry

Thank you for noticing that I’m not very dry

Boong Boong Yah

Walk down the hallway and what do I see

All my toys and animals staring back at me

Man, I am SO loving my infancy

Boong Boong Yah

Hanging with my friends is my favorite thing to do

Hi Dolly Hi Kitty and Hi Pengie too

I am so happy to be with all of you

Boong Boong Yah

Playing with my toys is fun and neat

But my rumbling tummy says it’s time to eat

What’s that What’s that Is that a treat

Boong Boong Yah Boong Boong Yah

After a long day of playing and lots of snacks

There is only one sound that has the power to distract

The garage door opening means that Mama and Dada are back

Boong Boong Yah Boong Boong Yah Boong Boong Yah

Note: Although it’s not one of the dozens of words and phrases that Emma has learned to say from one of us, the self-coined and oft-uttered phrase “Boong Boong Yah” means give that to me, please.

At least that’s what we think it means.

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Hello everyone and welcome to yet another edition of R & R-squared. I apologize for the online disappearing act these past seven days but I figured that you’d understand if I wanted to get all the keg stands, beer bongs, and games of naked Crisco Twister out of my system during the first week of summer vacation. Now that I’ve completely recovered from the mother of all fictitious hangovers, I am rejuvenated and revitalized and ready to write. And equally ready for you to read. Enjoy the post.

Holiday in the Hamptons. My favorite new tv show of the summer is Royal Pains. Part fish out of water drama (a black-listed NYC E.R. doc stumbles upon a new career as a concierge doctor to the fabulously wealthy!), and part MacGyver-MD thrill-ride (Get me a sharp knife, a ballpoint pen, and a bottle of vodka, Stat!), this socio-economically correct show (Dr Hank treats both the rich AND the poor!) has something for everyone. Program that DVR now.

Revoke My Man Card. Shhhhh, don’t tell anyone but I was really into the Real Housewives of New Jersey. Man, talk about drama for your mama. Personally, I’m glad that Teresa decided to get new “bubbies”. At least now she looks like the rest of the ‘wives.

Can’t Fight City Hall. While I’m not going to name names, someone that I know got pimp-slapped by the City of Good Living for trying to run an end around the normal building permit process. After being caught and shut down for a week, the proper paperwork was finally ratified and the project was able to continue unabated to it’s conclusion. Lesson learned, right, my IMS/TM?

An Offer You Can’t Refuse. In a possibly related development, thanks to an over-eager whistle-blower named A.N., several residents in our neighborhood, present company included, got their sidewalks painted orange by the City and tagged as dangerous. We also received notification to get it repaired. On our dime.

They Don’t Write ‘Em Like They Used To. During a 30-minute span on the radio recently, I heard the following three songs: Birthday Sex, Lonely Stoner, and Disco Stick. Remember when Sisqo’s Thong Song was pushing the limits of acceptable taste.

Those Crazy Khans. Congrats to Farah on her move to Los Angeles. Don’t forget about all of us little people in the Bay Area. And save me a seat at Les Deux. Props to Ameer on his graduation from SJ State. Thank you for including me in your speech and for calling me your brother. And to Alia, good luck on your billable hours, Pea Hag. I’m looking forward to Idol Live with you and the Shadow.

(Not My) Million Dollar Idea. Imagine how off the hook it would have been if George Michaels would have endorsed Rice Chex cereal during his heyday twenty years ago. I Want Your Chex would have been everywhere. Don’t you think it’s time you had Chex with me? Credit should go to my college roommate Sean B for the idea that never escaped the dark recesses of  my sub-conscious mind. Yes, have some.

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Monday, Briefly

Emma has this cute little toy rocking horse that, when functioning properly, not only whineys and makes a click-clack, click-clack galloping sound, but also wiggles its nose and mouth and shakes its tail. Completely adorable, I know. However, for the past month the diminutive pony has been rendered immobile and shamed into silence by a set of drained batteries. Emma was quite pleased when her nana replaced them and her beloved horsie roared back to life, neighing and click-clacking with the renewed verve that only a fresh pack of Duracells can provide. All was well in her world until she innocently pressed the on-button in its right ear and the pretty pony awoke quite loudly and boisterously from its night’s slumber. I swear, if they ever hold a baby olympics, Emma would be the prohibitive favorite in the five-foot dash based on how quickly she bolted from the horses side and into her grandmas arms. To her credit, she didn’t cry but she is giving the pony its space for the time being.

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Fehmeen bought an iPhone yesterday. She also switched cell service providers. Quite unexpectedly and most definitely not a part of the originally conceived plan, she was forced to abandon her old 805 area code number for a more local 650 one. Later that evening after we’d updated the phones software, Fehmeen decided to text her entire contact  list with the following message: “My new cell number is 650-xxx-xxxx.” As soon as she hit send she realized her somewhat important omission but it was too late. The deluge of texted replies of “Who is this?” had already begun to blow up her in-box. She quickly responded with a mass “This is Fehmeen, btw,” but the damage was done. Anyone who knows Fehmeen knows that there wasn’t a hole deep enough to crawl in as this episode played itself out. Luckily it ended quickly enough.

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There are days when my legs feel heavy. When I try to move it’s as if my legs are made of lead and I’m walking through quicksand. Real slow going. Yesterday was one of those days. And my balance was off more than it usually is, even with my Italian man-servant guiding me. Was this a portent of things to come or was it just a bad day?

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“Did you notice how the energy shifted inside your body?” asked Charles upon completing the Qi Gong session.

“Yeah, I think so,” the other man said. “I mean, visually speaking, the colors that I was seeing in my mind got a whole lot more vivid and vibrant around the middle of the treatment.”

“Hmmmm,” replied Charles. After a brief contemplative pause, he continued speaking. “A prayer being accepted caused the shift within you.”

As the man exited the building and approached his car, he brimmed with the excitement and anticipation of wanting to tell his wife of the breakthrough he’d apparently just experienced. The man reconsidered his plan when he noticed that his wife was upset and crying.

“After I dropped you off, I drove to Sunnyvale to buy some gas. Then I cut across town to get a car wash and I knew as soon as I grabbed my purse to pay for it that I had left my wallet on the top of the car at the gas station.”

Her voice wavered slightly as she wiped away the tears from her eyes.

“The whole way back to the gas station I prayed and prayed and prayed that someone would pick up that wallet and give it to the attendant. But when I got there, nothing. I even retraced my route back to the car wash. I can’t believe that nobody returned it. What the hell happened to the good people in this world?”

Five minutes away from their home in San Carlos, the woman checked her voicemail.

“Hello, I’m calling from SMERC and I just spoke to a woman named Nicole and she said that she just found your wallet. Her number is … ”

As his wife’s temperament shifted from glum to gleeful, the man immersed himself in thought about the events that had just transpired.

When he was first informed of the change in his energy, he envisioned a time in the immediate near-future where his precipitously declining body would methodically begin to regenerate itself.

His thought-process shifted away from himself when he realized the amount of tedious busywork that a lost wallet would put on his already overwhelmed wife.

He then connected the shared contents of the lost wallet with the shared burden of his disease and the man clearly saw the absolute interconnectivity between him and his wife.

It was only during the time she was on the phone with Nicole when he realized the true nature of the shift in his energy amidst his Qi Gong session. The prayer being answered was not only his wife’s, but his own, as well.

He just didn’t know it at the time.

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As promised last week, here are more specific details about the premiere of Alaa’s film, The Adventures of ALS Boy.

Stanford University

School of Humanities & Sciences

Department of Art & Art History

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2009 Spring MFA Documentary Screening Number 3

Films by the First Year Students in the MFA program in Documentary Film & Video

–   –   –

8 documentaries in 16mm color film

Thursday, June 11, 2009, 7:30 pm

Annenberg Auditorium

–   –   –

Free and open to the public

Q & A with filmmakers and reception to follow

–   –   –

For directions and a brief synopsis of the 8 films being shown, click here.

If you have any questions or want to rsvp for the post-premiere after party at the world famous Carlos Club, email me at jasonp110@yahoo.com  .

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How long does it take my Nani and Nana to get an in-store approval for an Old Navy credit account?

Long enough for a fourteen month-old baby to do the following:

Play a quick pick-up game of toddler soccer with her mom and dad using one of the many garishly colored volleyballs being displayed for sale in a large, wire bin.

Assume complete and total control of her father’s electric wheelchair while sitting on his lap by not only grabbing the handheld, omni-directional, maneuverability device, also known as the joystick, but by learning the functionality and operation of the variable speed dial. (Basically, when I would lower the speed by spinning the dial to the left, the Bug would counter and increase the speed by dialing it back to the right).

Sit pretty in an Old Navy baby-friendly shopping cart, however, not in the  manufacturer’s intended infant seat area but rather in the mesh-lined garment storage area instead. For the record, she quite enjoyed her brief stay in there as evidenced by her beaming smile and frequent flurries of giggles.

Attempt to befriend any number of the Old Navy Supermodelquins on display in the front of the store by putting her fingers in the dog’s mouth and by holding hands with the shorter ones several times.


Emma's "fake" friends.


Replace the doggie with a baby and you'll see what we saw.

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Save the Date

Remember last month when I wrote about my experiences making a documentary with student filmmaker Alaa Al Dajani? Click here for a reminder.

Well, the film makes its big-screen debut next Thursday, June 11, 2009, on the Stanford University campus in Palo Alto at 7 PM.

More specific details to follow once they are made available to me.

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Last night around 9 PM, I was lying in bed, legs outstretched and crossed at the feet, right hand resting comfortably between the back of my head and the pillow, tiny white earbud headphones placed snugly in my ears as I listened to the sounds emanating from my metallic blue iPod Shuffle. As usual, my ears were being treated to an eclectic array of musicians and singers, artists as diverse in style and substance as Steve Miller, Fiona Apple, William Hung, Kings of Leon, and Britney Spears.

About half an hour into my listening session, a Trace Adkins song began to play. I discovered Trace about a year or so ago when he appeared on Celebrity Apprentice. He seemed like a decent, stand-up guy with a really deep voice so I took a chance and purchased his greatest hits CD. Well, that disc stayed in our car, and in heavy rotation, for well over a month.

During that period of time, one song in particular had me in an emotional stranglehold. Whenever I would hear “You’re Gonna Miss This”, no matter what kind of mood I was in, happy, sad, content, or utterly indifferent, I would break down and cry uncontrollably. The crying would turn into hysterical sobbing as the song played on. By the end, I could dial my emotions down enough so that all I was left with was the occasional leaky eye and a serious case of the post-bawling sniffles.

Why did this song affect me so much? First and foremost, it’s an extremely well-written and expertly crafted song that not only succeeds in telling it’s own specific story, but it is also able to branch out and transform and apply itself to the listener’s breadth of experience as well. Then, if you factor in that it had only been about a month into my being told by numerous experts that I did indeed have an incurable, terminal disease, and that being told you’re dying doesn’t make living in the here and now any easier because all I was doing was thinking about what I could potentially be missing out on, all the while knowing both in my head and heart that these were the easy days of my illness where I still had nearly all of my speech, movement, swallowing, and breathing abilities more or less intact.

So, yeah, that’s why I cried.

But an interesting thing occurred last night when that song came on my Shuffle: I didn’t cry. I mean, it wasn’t even close. No quivering lips, no squinting eyes, nothing. As the song played in my ears, I found myself being transported to the time and place over a year ago in our car when I was powerless to control the surge of emotions as they washed over me.

From above, I watched myself crying and I remembered how it felt to be living my life then. And then I thought about how it feels to be me now and that despite my setbacks, my life is pretty damn good these days. Enough time has elapsed between then and now to provide me with the proper perspective to realize that while my feelings of mood-altering panic and infinite sadness were completely valid in that space and time, it’s okay to have moved beyond that specific set of emotions.

In fact, it’s more than okay, it’s completely normal.

Grrrrr. Click here to connect to youtube to watch the video. Sorry about that.

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