Archive for April, 2009

Making the Movie Part 1

Sometime around the beginning of April, I received a message via Facebook from a Stanford film student named Alaa. In his email, Alaa explained that he had read the Almanac piece on me and was interested in making a documentary about my story. A few phone convos and face to face sit-downs later, my agent (Fehmeen “Ari Gold” Picetti) and I signed our names on the proverbial dotted line, thus handing over the keys to the gold-plated ALS-Calade that is my post-diagnosis life to the budding filmmaker.

The Fine Print

Because this is a student film, there are certain practical and logistical constraints at play in regards to production. First, shooting is limited to two days in order to allow equal access to the equipment for the other students in the program. Second, since they are working with real (non-digital) film, actual footage is limited to four rolls, or forty minutes, of film, which will eventually be pared down to a six to eight minute final product. And finally, because I am a true man of the people, I decided to waive nearly every single item on my rider except for two: an unlimited supply of Cokes with no ice and mandatory grape eating breaks for me and Emma.

Day One of Filming

12:15 PM, Office. I am walked into the room by my valet, seated at my desk behind a laptop and asked to type away on my blog site. I comply but am slightly distracted by the ‘spirited’ discussion between Alaa and David, the cameraman, about light reading conversions and f-stops. Anthony, the soundguy, maintains a low-profile under his headphones and boom mike.

2:30 PM, Entryway. Alaa has me walk across the hardwood floored entryway with my cane. Twice, because my foot was out of frame the first time. I’m exhausted already. Bring me my grapes. And my baby.

3:00 PM Lunch break for everyone.

4:15 PM, Kitchen Table. My mom and I are filmed playing a card game called Spite and Malice. It’s fun except for the fact that she plays a completely different version than I’m used to. I wonder if I’ll look confused on film.

Please join me for Part 2 of this post tomorrow. Gtg, Emma has a checkup now and is scheduled to get a shot. If you listen around 5 PDT, you may hear her wailing.


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When it comes to choosing my music for an acupuncture session, I take the job very seriously. The right choice can be positively inspirational (Steve Miller Band’s Greatest Hits or KFOG’s Live from the Archives) but the wrong CD selection spells absolute disaster (The Cult’s Electric). A good decision enhances a session whereas a bad call can outright doom it.

My choice of tuneage last night was a huge one. Not only was I playing a crucial role in the course of this particular treatment, I was also setting a certain precedent ambiance-wise in my new acupuncture venue. For weeks I had been struggling mightily to even enter the Hen’s house, which is perched atop a hill and up a long and winding staircase, for my treatment. As I emerged from the room following my latest session, Fehmeen broke the news to me: I would no longer be coming here for acupuncture. Instead, Jen, being the nurturing goddess and outstanding human being that she is, agreed to treat me in two different places. We would alternate our weekly sessions between her place of business in Santa Cruz and my home in San Carlos.

The thought of receiving treatment in the friendly environs of my own house, on my own bed, had a certain appeal to me. Once the needles were removed from my skin, I could very easily choose to continue my magical journey of floating around the cosmos, high on the energy of my own redistributed qi. Or not. I could just as simply crash out for the night.

All that was left to do was to choose the music. After hours of deliberation, I went with a new twist on an old classic: The Beatles Love. For those of you trying to figure out where Love belongs in their discography, I suppose you could say it’s the latest Beatles album. Love is the soundtrack to the spectacular Circe de Soleil Vegas show at the Mirage. Do yourself a favor and check it out (Fehmeen almost puked during the extremely psychedelic and nausea inducing performance during the early days of her pregnancy). The music is a remastered, remixed, and occasionally mashed-up collection of about thirty classic Beatles tunes subtly tinkered with and transformed into something brand new, yet immediately recognizable.

I knew right away as soon as Jen left me to stew in my own juices (needles in and qi flowing) that I had made the correct decision tunes-wise. As the tracks played on, I made the conscious decision to focus all of my attention and perception on what I was hearing, rather than on the random and meandering thoughts floating through my head. Within minutes, my mind and body became Love. I found myself ebbing and flowing with the rising tides and undulating waves of pure musical euphoria.

It was arguably one of the coolest and trippiest acupuncture sessions I had ever experienced and it was because of the music. When Jen removed my needles and left, I continued to listen and float away until I drifted off to sleep.

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The Mystery of Life

Yesterday marked my triumphant return to the city of Sunnyvale. It had been about six months since I had shown my face around town and although my visit there was brief, it was not necessarily without incident.

We were killing time before a 4:20 PM (he he) showing of The Soloist and we decided to stop by the world famous Daily Donut for an afternoon snack. Being a little less ambulatory than my partners in crime, I stayed back to guard the CRV while my entourage entered the store to stock up on supplies.

As I sat in the car waiting for them to return, I took advantage of the ample time afforded me to soak in the once familiar, now half forgotten sights and sounds of The ‘Vale circa the intersection of Fair Oaks and Caliente. There was mariachi music blaring from the car next to me as an endless stream of folks filed in and out of the 7-11 to my immediate left.

Once the Ford LTD, adorned with a wooden squirrel hood ornament, parked in front of the convenience store failed to command my full attention, I shifted my gaze to the plate glass window storefront of the donut shop. Of the multitude of signage that decorated the floor to ceiling entranceway of the store, one message in particular captured my fancy.

It read: “Fresh Donuts or find I’M HOT in the morning!”

Umm, what?

Try as we might, the assembled members of Team ALS Boy could not crack the code and decipher the mystery of the sign. So I ask you, oh loyal reader, what does it all mean?

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One of the so-called perks of accepting nature’s early-age retirement package (aka ALS) is that I have a whole lot more free time than most people I know. So what’s a guy to do with his copious amount of spare time? Well, when I’m not offering up solutions to our nation’s economic woes with the President via our top-secret Blackberry communiques or entertaining Emma with Wiggles videos on Youtube, I am most likely watching a movie somewhere. And once I’ve seen three or four flicks, I’ll give you my take on the films right here on this very website. My dream in doing this is to foster a discussion about the movies we love and the movies we hate, and also to give a non-committal head-nod to those movies we merely tolerate. I also feel like I owed Alia, Clarece, and Lurker something because I chose to shut down my movie review website. Enjoy the latest batch, everyone.

sunshine_cleaning_poster1Sunshine Cleaning. While it was great to see two of my favorite actresses (Amy Adams and Emily Blunt) score lead roles in a movie of this pedigree (a small budget “indie” picture), I couldn’t help but feel slightly underwhelmed by the end of the film. Sure, it was entertaining and all, but to me, the final fates of the characters seemed a bit too convenient for my liking. That being said, I would happily rent it at Blockbuster just to see if my opinion would change at all during a second viewing. Maybe my lukewarm feeling about this film is the by-product of the unwarranted stigma of being dubbed this year’s Little Miss Sunshine: I felt equally under-impressed by Juno, which was last year’s version of LMS. Grade: B-

enchantedposter Enchanted. I remember making the decision to go and see Enchanted the first time I saw an ad for it on tv. After waiting weeks for the film to hit the theaters, Fehmeen and I finally found some time to go to the movies during the Friday after Thanksgiving 2007. The only problem was that Fehmeen had absolutely zero interest in seeing “a cartoon”. So rather than getting into a fight about which movie to see, we decided to go our separate ways for two hours: I saw Enchanted and Fehmeen saw This Christmas. Sure, I eventually got over feeling self-conscious at being the only solo thirty-something male in an audience comprised of mothers and children, and by the time the film began, I found myself being whisked away to the animated land of Andalasia while humming the cheerful chorus of “True Love’s Kiss”. I loved the movie then and I’ve loved it every other time I’ve watched it (including the two times I saw it recently on HBO in less than a 24 hour period). And for the record, Fehmeen loves it now, too: We even own the DVD. Grade: A-

adventureland_poster1Adventureland. I went into the film expecting a broad, dumbed-down, lowest common denominator teen comedy but what I got instead was something infinitely more satisfying. Adventureland is a smart and funny late-eighties period piece that deftly encapsulates the look and more importantly, the attitude, of the era. The story is written such that the characters are given ample room to breathe and grow in a natural and believable way thus allowing the relationships forged between them to unspool at a slower than genre-typical fashion which, in turn, affords the audience the opportunity to savor the intricacies of the actors’ performances, which ultimately results in a truly enjoyable movie experience. Whew. The only bummer, for me, is the lack of a commercially available soundtrack CD. iTunes, here I come. Grade: A-

knowing-posterKnowing. The warnings signs were there. First, previews for Knowing began to appear in theaters a good six weeks before the release date. Then came the onslaught of television spots soon after. Third, when was the last time Nicolas Cage starred in a good movie? (By my calculations it’s been seven years since Adaptation came out in 2002. Perhaps your number is less than mine if you enjoyed such classics as The Weather Man, Ghost Rider, or Bangkok Dangerous). Anyway, regardless of the plethora of available information out there telling me that this movie would suck, I still went to see it with Ameer and J2. And guess what? It did suck. In fact, it sucked so much that my friend J2 was able to sum the Knowing experience up in one sentence: “We would have been better off not Knowing.” I agree. Grade: D

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The Best of Intentions

I apologize to you, loyal readers, for not posting any new material here these past few days. When I mentioned in a recent entry that I would be upping my output quota, I failed to take into consideration the effect that a common cold could have on said output. To borrow a phrase from the Khan family vernacular, I woke up Sunday morning with a “pokey” throat. By Monday, the cold had migrated north to my nose, and by the time the alarm clock buzzed me awake Tuesday morning, I was treated to the ‘feeling crappy all over’ feeling that I miraculously had been able to avoid all winter long. I stayed in bed until 1:30 PM, had a chiropractic adjustment at 3, fed my face at 7, and crashed for the night at 8:30.

It should be noted that in my pre-ALS days, I was fairly impervious to colds. Prior to my diagnosis last year, I never used a sick day for an illness (unless you count my yearly bout of Giants Opening Day Fever). I guess what I’m trying to say is that now that I’m sick, getting sick sucks.

I feel a whole lot better today. I’m back to work today and blogging like a madman. I should conserve my strength for the big show that I’m attending at Oracle in Oakland tonight. Here’s a sample of the pre-recorded lyrics I’ll be hearing this evening: “All eyes on me in the center of the ring just like a circus.”

And yes, I promise a full review of my Britney experience very soon.

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Long Story Short

The First Day of Spring Break 2009

I find myself perpetually fascinated by the decisions we make on a minute by minute basis and the ways in which those choices affect the outcome of our lives, at least in the short term. A vast majority of those decisions yield the desired, non-adverse result but every so often, even the most innocent and innocuous choices have immediate and severe consequences.

Such was the case last Monday when I stubbornly insisted on eating lunch at the Chili’s restaurant in Menlo Park. Because we were running late and were pressed for time, Fehmeen gave me several reasonable dining alternatives, all of which were summarily dismissed by me.

I should have recognized the early warning signs of my impending personal apocalypse when our lunch was interrupted by the creamed corn colored vomit being spewed from the mouth of the four year old boy in the booth directly across from us. Fehmeen and I exited the restaurant leaving more food on our plates than we had eaten, already running late for our acupuncture appointments.

Once my session had ended, I began the lengthy process of swallowing my pills and supplements as I waited for Fehmeen to complete her treatment. I probably took about three dozen pills during that half hour before we hit the road to make my 4 PM appointment at Kaiser in Santa Clara.

Fehmeen pulled the car over into a non-descript parking lot when it became readily apparent that my nausea was escalating quickly to the point of something much more dire. The decision to call 911 was made all that much easier when I began to sweat profusely, double over in pain, and nearly lose consciousness.

By the time the paramedics arrived, the worst of it had already passed. We opted to drive ourselves to the Kaiser ER to get me checked out, and five short hours later, were back home eating grilled cheese sandwiches for dinner at 10 PM.

Long story short: I am fine except for the ALS . And always listen to your wife (she told me say that).

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Ch, Ch, Ch, Changes. If all goes according to Hoyle, you, loyal reader, will get at least four ALS Boy blog entries per week. Yes, you read that correctly: four new postings each week. In order to accomplish this goal, I am ceasing publication of my other two blogs (a big thank you to all five of you who visited regularly) in order to focus my attention on this one. I will also spend some time each day writing my memoirs, so I’ll apologize in advance for the short(er) length of some postings.

Undiscovered Country. Fehmeen has Bravo, Aria has VH1, the P-Hag has HGTV, and now, at long last, I have a cable channel of my own. I discovered the Sundance Channel equally by accident and by a hot tip. Things I’ve enjoyed so far: The Elvis Costello interview show, a short doc about the recording of the Travelling Wilbury’s record, a British show about three single women called Pulling, and part 2 of some epic multi-generational Italian miniseries. Anything else I should try?

Once a Geek, Always a Geek. I had a very vivid dream the other morning about how to figure out sales tax if/when pennies disappear from circulation. I woke up sweating and reaching for my TI-83 Plus.

In Hoc Signo Vinces. I received a package in the mail last week from the Brothers of the Sigma Chi fraternity at UC Davis. Enclosed in the envelope was a letter and three t-shirts, one of which was signed by all the active members. Even though it’s been 17 years since my own days as an active Sig, it was great to feel the bonds of brotherhood. And thank you to Kaitlyn Sitts for her part in making it happen.

Usher, Please. Over break, I went to see I Love You, Man with my friend Janet. We arrived about five minutes into the movie only to find that all of the handicapped seats were occupied by blue hairs with walkers and wheelchairs. I had to improvise and grab an aisle seat in the front. I have to wonder if the octo/nonegenarians dug the movie. Or even got it.

Loves It or Hates It. My sister-in-law, Farah, recently got bangs and we here at ALS Boy want to know what you think of her new hairstyle. Vote here:

As The Bug Turns. Lock up your valuables. Emma is walking. Gulp, double gulp.

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Hi Mama and Daddy-

Just in case you couldn’t tell who is typing this, it’s your daughter, Emma. If Daddy was careless enough to leave his laptop open on the table near my highchair, why shouldn’t I take advantage of the opportunity to set the record straight? As far as I’m concerned, the world needs to hear my story: It’s a story of a baby wronged, and after exactly 365 days, a baby avenged.

I would be willing to bet dollars to diapers that the two of you don’t even remember what went down the evening of April 2, 2008, but I do. How could I forget? After all, it was only my second night ever in this cold, cruel world, having just been born and all, and I was trying my hardest to acclimate to my new and foreign surroundings. Sure, I understand that you guys were adjusting too, but that doesn’t excuse you for what happened, now does it? I mean, you are both highly educated adults, a bit sleep-deprived, granted, but still. But still.

Anyway, you two rookies had been doing a pretty good job of feeding me and changing my wet diapers, I’ll give you that much. It wasn’t until Mama discovered the secret drawer in the bottom of my clear plastic bassinet that the trouble really started. I will never forget the absolutely clueless tone in your voice when you asked Daddy, “Why do we have so many of these?”, in reference to the half-dozen high stack of newborn-sized white shirts folded neatly in that drawer. “I dunno,” was his equally eloquent, yet strangely mumbled reply.

It was right then and there that I recall the two of you staring at each other and coming to the same realization that I had arrived at a whole lot sooner than either of you noobs: Thirty-six freaking hours in the same stinky, crusty, and drooled-on tiny white t-shirt does not a happy baby make. And then you have to make a call to the on-duty nurse for assistance with the changing of the offending and offensive garment: Are you kidding me?

I decided that the best course of action was to play it cool… for the time being. Sure, I had been force-fed my first spoonful of betrayal, and in swallowing it down I had acquired the bittersweet taste of vengeance, but the here and the now was neither the time nor the place to get even.

I would wait for the perfect opportunity to hatch my nefarious and dastardly scheme. Then, I would lull you in with my cutest baby in the whole wide world act and let the hammer fall when you were most vulnerable. My plan would work, it had to work: Vengeance would be mine.

All I had to do was wait for my opening.

And wait I did. Hours became days, weeks turned into months, and before I knew it, I turned one. I awoke the morning of April 2, 2009, the day after my birthday, with a singular thought and a laser-like focus. Today was the day: The day of reckoning.

From the moment you guys arrived home from school, I gave you exactly what you wanted: A heaping helping of unadulterated cuteness, a side of my patented toothy smile, and to top the whole thing off, a dash of 100% pure, adorable, Emmabug charm. As the afternoon turned into evening, I continued the illusion by keeping the usual whining to a bare minimum. Even my post final bottle of the night sleepy baby act was sublime, a truly Oscar-worthy performance, if I can say so myself.

All modesty aside, the real acting had yet to begin. After allowing the two of you about an hour of uninterupted sleep time, I made my move around 11:00 pm when I turned on the tears and did my best impression of the siren on a fire engine. Because I had greased the wheels so well earlier in the day, I knew I had built up enough political capital with Mama to earn a coveted “get into bed with Mom and Dad” ticket, effectively bypassing the usual “pick me up, change me, and put me back in the crib” routine I was used to.

Once I was placed in bed between you guys, it was like taking candy from a baby, or better yet, like taking sleep from an adult. Hee, hee, hee. Every thirty to forty-five minutes from that point forward, I woke up with a few minutes of wimpering sobs or a well-placed scissor-kick to the back or even a full-on wail of an hysterical cry. I kept this up until about 4:00 am when I finally passed out from pure exhaustion and exhilaration.

As I reflect back on it now, the hour and a half between when I fell asleep to when your alarm went off was the best ninety minutes of sleep in my life. In that short amount of time, I dreamed of spotless and pristine white baby shirts and my parents walking around the next day in a zombie-like trance. I also dreamed of a place and a time where all scores were settled and all debts were paid.

When we awoke as a family the next morning and I stared into your exhausted eyes, I knew that vengeance was mine. But it wasn’t as sweet tasting as I hoped it would have been. I knew then, exactly one year later, that we were finally even and I’m okay with that. Cool? Cool.

Now, let’s have a conversation about that horrible dress you put me in last week, shall we?



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In Good Hands

You could say that I’ve had a pretty good week. It started with an off the hook party hosted by my family on Saturday afternoon. It continued with the publication of the awesome article in The Almanac on Tuesday. Wednesday was spent in celebration of the Birthday Twins’ big day: Number four oh for me and number one for The Bug.

As amazing as those events were, and they were truly epic on the emotional scale, it was something else entirely that gave me cause for reflection.

I spent my birthday writing in my room at school. On two occasions, the door of the adjoining classroom swung open and I was treated to a pair of the most joyous renditions of  Happy Birthday I have ever heard. But what blew me away the most were the cards and letters I received. Kids that I have never taught, most of whom I hardly know (if at all), created and hand delivered the most beautiful and thoughtful cards to me throughout the course of the day.

Thank you to Cami, Natalie, Katie, Melissa, Jennie, Stephanie, Ellie, and Conner for making my incredible day just a little more incredible.

It is because of kids like you that I know that there will always be love and compassion in the world.

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Let Me Count the Ways

Dear Emma,

Today is a very special day for you, my little Emmabug. Exactly one year ago today, you were born. Everyone was so happy that you were finally here, but I know for certain that I was the happiest of them all. You see, Emma, I was born on the same day as you were, exactly forty years ago. Not only are you my Daughter and I am your Daddy, but we share the same birthday as well, and that’s a very special thing.

Since you came into my life, I have felt love in ways that I never imagined possible. You have brought new meaning to my life and for your birthday, I wanted to tell you how much I love you. And I know you can’t really read yet, so maybe Mama can read this out loud to you.

  • I love that you are almost always happy. Even when you are feeling fussy or sad, it doesn’t take long for Mama to make you smile that big, toothy smile.
  • I love sitting next to you at the dinner table. Watching you take such joy in eating, it makes my food taste better.
  • I love watching you play on the family room floor. It doesn’t matter if it’s your toys, stuffed animals, and instruments, or if it’s a wooden cookie (coaster), a plastic water bottle, and a bowl of Cheerios, you always seem to be having fun.
  • I love it when you use my legs to pull yourself up off the ground. You then flash me that cute, crinkly-nose smile before going on your merry way.
  • I love riding in my wheelchair with you in my lap. You know, for a baby, you are an excellent driver.
  • I love that you love books. Whether it’s sitting with Mama reading “I Love You Through and Through” together or sitting by yourself on the floor flipping through the pages of “Peek-a-Baby”, it’s obvious that you’re going to be a reader soon.
  • I love that you have music in your blood. Sure, you dance a little whenever you hear any song but you really cut loose when there’s a rock song (like Billy Squier’s “Everybody Wants You” or Lynyrd Skynyrd’s “Gimme Three Steps”) on the computer. You are such a Daddy’s Girl.
  • I love that your favorite things are the cordless house phone (“Hi!”) and the Comcast remote control. I love even more that you are allowed to play with them.
  • I love it when you hear my footsteps and cane taps on the hardwood floor from your play area in the family room and you scream “Dada” as loud as you can and crawl to meet me in the hallway.
  • I love seeing you cruise around the wooden coffee table. Judging by how well you are starting to stand on your own, you are going to be walking very soon.
  • I (secretly) love hearing you cry out from your crib on weekend mornings because Mama usually brings you into bed with us so we can sleep for a few hours more as a family.
  • I love your curiosity about everything. That which you don’t know, you figure out, and then, you don’t forget.
  • I love your spirit. From that twinkle in your eyes to your easy going nature, you are indeed blessed with a kind and beautiful soul.

Happy First Birthday, Emma!



April 1, 2009


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