The Picetti Family, May 2009

Here are a few photos that I would like to share with you of my girls and me. Thank you to Kim M for the school shots.

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Burning Questions #2

Hey everyone! Looks like it’s that time of the blog again where I roll out three questions for you, my esteemed and loquacious audience, to answer. As always, participation is voluntary but your comments are absolutely appreciated.

On to the questions.

1. Whenever I am in a restaurant and the waiter is reciting the day’s specials or when I am watching a weatherperson on the news talking about the weather, I completely zone out and hear nothing they say. Not a single word registers in my brain as something meaningful and understandable. Has this ever happened to you? If so, with whom, or am I just a freak?

2. Is anybody watching the train-wreck tv show that is the new season of Jon & Kate + 8 ? (I know for a fact that my Italian-American man-servant DVRs every single episode). Anyway, what is your take on the not-so-happy couple? Personally, I predict a knock-down drag-out brawl by episode six that forces production of the show into hiatus for several weeks only to return leaner and meaner as Kate, the 8, + Jon on Weekends & Holidays. You?

3. I was chatting with an acquaintance on Facebook the other day and he got to boasting about his autographed memorabilia collection. He went so far as to invite me to meet AC/DC when they come to town because he knew at which hotel they were staying and that they were cool with signing items. My question is this: Have you ever met a celebrity? Was it by chance or by design? The coolest story wins an ALS Boy autographed photo.

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My MacGyver Moment

I told myself this morning that I would be working by 9 AM. It didn’t happen. Here’s why:

By 8:45, things were ahead of schedule. I had finished my breakfast (a reduced fat turkey bacon and egg sandwich from Starbs), chugged my Ensure (yummy chocolate), read my comic (The Unwritten #1), and swallowed my pills (hooray for fish oil). All that was left to do was to plug in my (depleted of battery power) laptop and get to writing.

I connected the cord, opened the screen, pressed the power button and waited. I repeated the process and the result was the same. No power, no juice, no nothing.

For most people, trouble-shooting a computer plug problem is a complete no-brainer, a ten second inconvenience at most. For me, though, an issue like this can easily turn into an all-day affair. Seeing as how I am currently endowed with the strength of a 98-pound weakling and the speed of a 1968 VW Microbus travelling uphill through a patch of wet cement, the likelihood of a quick and easy fix wasn’t looking so good.

In my mind, there were three potential options for solving my little problem. One, I could do nothing and wait for someone to walk into my room. I decided against this option for several reasons: I had no idea if and/or when anybody would stop by and if they did, how the hell would I be able to ask them for help (my ALS accent is rather thick these days). And besides, I had no more comics to read, so, no on that one. Two, I could call for help. But since I am verbally, I mean, gruntally, unable to differentiate between a moan for ‘fix my computer’ help and ‘I’ve fallen and I can’t get up’ help, I decided that the last thing I needed to do was to cry wolf and get everyone in a panic. Been there, done that, AND bought the shirt. No thank you. My third option was to fix the problem myself. Wisely, I went with that one.

Assuming my lack of power issue most likely started and ended either in, on, or around the long white junction box on the floor to the right of my desk, I pressed the power button on my boom-box to the on position so that in the event my theory was correct, I would be able to hear the power being restored instead of having to walk all the way back to my laptop to verify that fact. It was a brilliant notion, if I do say so myself.

Next, I (literally) inched my way around my desk towards the power strip, maneuvering my not-so-flexible body onto the seat of my wheelchair. Spinning my chair around 180 degrees, I was able to visually confirm exactly what I had suspected all along: The red button on the white power box was switched off.

I bent down to flip it on but my fingers were a good six inches short of the mark. Not being the kind of person to give up at the first sign of adversity, I quickly scanned the room for some type of assistive device, like a ruler, to help me reach that oh-so-close-yet-so-far-away tiny red button. My first look-see yielded me absolutely nothing useful. I decided to go mobile with my search, canvassing every nook and cranny of my shared office from the safety and comfort of my electric wheelchair.

I happened upon a box of thick felt-tipped markers that were sitting on a shelf up against the far wall. With exacting precision and an inordinate amount of effort, I painstakingly connected four pens, cap to base, creating a sort-of Super Pen, whose only function in the world was to bridge the gap between my fingers and that damn red button. 

Armed with my blue-blue-red-purple pen, I rolled back to the white junction box ready to do battle.

Did it work?

You’re reading this, aren’t you?

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We Are All Rock Stars

No matter who you are in the world, everybody has got a little rock star in them.

Think about it for a minute. Have you ever acted in such a way or said something to someone or even done something, either good or bad, that is above and beyond the realm of your everyday, normal behavior? Maybe you’ve comported yourself for an indeterminate amount of time in an atypically larger-than-life fashion. Or perhaps you’ve had occasion to, as they say, step up to the plate and pull off something so unexpected that no one sees it coming.

If you can visualize yourself in any of the aforementioned scenarios, then you, my friend, are a rock star. You are a rock star for as long or short as the momentum of your particular moment lasts. Some people choose to ride the wave of relative fame or infamy all the way to the proverbial shore while other folks elect to bail on the entire experience not soon after they catch their first breaker. Whatever the case may be, for that glorious moment in time, you are a rock star and everyone, be it friend, foe, family, or stranger, knows it.

The following examples of rock stardom occurred within a five hour window of time this past Friday. Either the planets were aligned in some crazy syzygy (it’s a real word, look it up) or there must have been something in the air over the Menlo Park / Redwood City area that night. Whatever the cause, the effect was quite clear: three special people transcended their usually hum-drum lives to become the stuff of legend. At least in my mind.

Here are their stories:

The Charismatically Intimidating Diva

While waiting in line at Whole Foods, thirteen month old Emma had taken notice of a seemingly similarly aged boy sitting in his mother’s arms. After several coy, flirtatious glances failed to elicit even the slightest of reactions in the boy, a bound and determined Emma pulled out all the stops. She launched headfirst into her A+ material, secure in the knowledge that she had some real crowd-pleasing bits in her repertoire with which to impress him. “Hi, hi, HI!” Wave, wave, wave. Fake cough, fake cough, fake sneeze, fake yawn. Real yawn. “Uh oh.” Purr, purr, quack, quack. “Ah waaaah!” She paused to gauge his reaction. The young gentleman initially responded with a befuddled stare, which in turn gave rise to a look of sheer and genuine terror, and inevitably concluded with him bawling his eyes out as he clutched his mother tightly. Not overly impressed with his propensity for the dramatic, Emma instead focused her attention on the elderly woman with the blue hair one aisle over, leaving the weeping boy’s mom to ascertain exactly what just transpired.

* * * * *

The Eleventh Hour Savior of La Entrada

In much the same way our students receive their class schedules in the mail by late August, so, too , do the teachers at our school receive their tentative teaching assignments, albeit in their boxes in the staff lounge and on May 15th. Usually, this pre-summer ritual is the very definition of anti-climactic with nearly every faculty member being assigned the exact same position as the previous year. Any deviation from the status quo is typically driven by teacher request or by student population shift. But this May 15th was different. This year, the ess aitch eye tea really hit the fan. In a major, major way. For reasons that are too complicated, too convoluted, too political, and, quite frankly, too sensitive to divulge here, let me just tell you that several staff members were being handed vastly different teaching assignments than they wanted, or expected, to see. And if you know anything about human nature, the fallout from that news was nothing short of nuclear: La Entrada was the new Three Mile Island. A complete meltdown was looming. And then Fehmeen made a momentous, game-changing decision. Regretfully, I can only provide you with scant details of that decision, only that she will be taking on a new teaching assignment next year. It’s a job that she has wanted to do for years and as a by-product of her accepting the position, the move allowed all but a few of our colleagues to return to their more desired assignments. As a fellow educator, I applaud her courage to step into the breach of a new subject and as a husband and friend, I am excited to see her so excited about this great opportunity. I’m so proud of you, babe.

* * * * *

To Boldly Go … in the Back of an Ambulance … Again

When I went to see the new Star Trek movie with a friend on Friday, I’ll admit to you, my loyal and secret-keeping readers, that I did a bad, bad thing. Even though I knew it was wrong, I did it anyway. I flaunted one of the most hallowed and long-standing rules of the cinema and I did it with glee: I brought in AND consumed “Outside Food”. Earlier that afternoon when I purchased it, the “Outside Food” was almost an afterthought but as soon as the lights dimmed and the previews began to roll, the forbidden alure of the “Outside Food” was just too much for me to handle. I tore into the plastic packaging and ate my share of the “Outside Food” and settled in to enjoy the ride. When the movie (which was excellent, btw) ended and we left to meet Fehmeen downtown for dinner, I had all but forgotten that I had eaten any “Outside Food” at all. Unfortunately for all involved, I suddenly remembered about the “Outside Food” when my head came crashing down on the table of the sushi restaurant during our conversation about Fehmeen’s new job. Several attempts to revive me went unheeded when, at last, the paramedics arrived. They were operating under the assumption that I was having a seizure since I was unable to tell anyone about my experience with the “Outside Food”, which was, completely obvious to me, finally starting to kick in. Once I was in a good space in the hospital, I told the doctor about the “Outside Food” and an hour and a turkey sandwich later, I was home. Embarrassed, but home.

* * * * *

So, now I ask you, when have you, or someone you know, been a rock star?

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Somebody Call a Toe Truck

Life around my house can never be described as dull. Even the most mundane and personal daily routines have the potential to become full-on familial gatherings. Such was the case yesterday afternoon when a perspiration-drenched tennis player, a bathrobe and slipper wearing MD, a now-crying and no-longer-napping toddler, a freaked out, frazzled, and frustrated wife, and a bewildered ALS patient sitting naked (sorry) on a walker convened for an impromptu meeting to discuss, amongst other things, the big toe on my right foot.

Wow! How’s that for an attention getter? Are you in any way curious as to the sequence of events that led up to and culminated with the hasty assemblage of all local members of the SSSPNP (The Super Secret Society of People Named Picetti, of course). If you are, read on. If you’re not, read on anyway. It’s a funny story.

Laying in bed for up to twelve hours on the weekends is both a good thing and a bad thing for me. It’s good because my broken-ass body needs the rest but bad because with all that loafing around, I wake up hungry and depleted of energy. If my calculations are correct, asleep by midnight and awake by noon is twelve hours, plus another four hours since I last had something to eat and that gives me a grand total of sixteen hours without food.

That was the exact scenario when Fehmeen came to roust me from my slumber this past Sunday morning, err, afternoon: I was well rested but hungry. Recognizing the situation, Fehmeen spoonfed (aww) me applesauce before attempting to move me to the bathroom for a shower.

The journey to the bathroom and the actual shower itself proceeded without incident. However, it was my countless attempts to exit the tub/shower that caused a problem. One of the so called “perks” of my particular form of ALS is that my muscles tend to lock up when I am stressed, fatigued, hungry, cold, or nervous. Once those muscles are tight, it is very difficult for me to loosen them. It becomes an energy sapping mind game to try to get out of my head about the situation.

So, there I was, standing naked (sorry again) in the shower, legs locked, unable to move myself to get out of the tub. The detail oriented amongst you may be wondering why I’m not using a walk-in shower and to you, I respond with a “in five weeks when my handicap accessible bathroom remodel is completed” statement.

One call to John (my dad, who was now home from tennis and putzing around the attic), several confidence-building pep talks, and approximately ten minutes later and I was finally out of the shower.

From there, Fehmeen brushed my teeth and cleaned my eyes, ears, and nose. Once she applied some moisterizing lotion to my face, we were ready to head back down the hall to get me dressed.

We exited the bathroom easily enough, Fehmeen leading the way, walking backwards and holding my hands, as I lumbered forward. About three steps into it, my right leg didn’t lift as high I thought it did and my big toe got stuck on the carpet while my foot continued to move forward. Before we knew what was happening, my entire body weight was pressing down on my now unseen (because it was under my foot) big toe.

We crumpled to the ground in a heap as Fehmeen yelled, “FUDGE!!!”

But she didn’t say fudge.

My dad came running from the attic again, this time to help Fehmeen lift me and wheel me and my toe into the bedroom. My mom flew by us to console an hysterical and no longer napping Emma.

So, there we all were, just as I described in my first paragraph. There was some talk of taking me to Kaiser but that got shut down once my mom, Judy MD, determined that my toe wasn’t broken. In fact, it was feeling quite normal.

Besides, I didn’t feel like another trip to the ER. Like on Friday.

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Taking Candy from a Baby

Emma and I enjoy eating snacks. From puffs and veggie straws to Cheerios and animal crackers, we truly love our between meal pick-me-ups.

In fact, we dig snacks so much, we would be extremely hard-pressed to limit our consumption to just one type. Well, on second thought, that’s not quite true. Actually, it’s pretty much a no-brainer. We could. And easily.

You see, the Bug and I are hopelessly addicted to and certifiably insane for grapes. Green ones or red ones, as long as they’re round, we’re into them.

Some of us more than others, it would appear.

Yesterday afternoon around 5 PM, Emma, doing her best imitation of a pinball, bounced and careened between a pair of human bumpers: Fehmeen on the couch with a box of salty, Annie’s bunny crackers and me on the recliner with a bowl of grapes. Back and forth she went, from Mama to Daddy, her little legs propelling her at a dizzying rate of speed (for a baby) as she deftly and expertly alternated between bites of grapes from her left hand to bunny crackers in her right.

Initially, she was quite content to accept my meager and labored offering of a single, lovingly, hand-picked grape from my fingers to hers. (And when I say labored, tearing a grape from the stem, to me, feels a lot like I would imagine pulling rebar from concrete would feel like, thanks to a lack of adequate finger and hand strength brought about by non-functioning motor neurons. Thank you ALS).

After two go-rounds of me handing her a grape, the limit to her patience was quickly exhausted and she began to reach into my bowl herself, easily extracting a grape of her own from the stem. She and I were both happy with this arrangement until the time she grabbed for a grape and ended up taking about fifteen grapes, which were attached to a long stem, leaving me with a big bowl of nothing.

It was like taking candy from a baby.

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Britney Spears Versus Clem Snide

The World’s First Compare and Contrast Concert Review of

Britney Spears and Clem Snide

Versus   

During a whirlwind two-week period in the month of April, I had the rather unique privilege of attending live performances by two distinctly different recording artists on the road in America in support of their latest musical releases. Clem Snide, led by the enigmatic and prolific singer songwriter Eef Barzelay, is a three-piece indie rock group known for their catchy tunes and thought-provoking lyrics. As for Britney Spears, I’m sure you’ve heard enough about her. Who hasn’t, right?

Now, before I launch into a point by point exercise in compare and contrast, I would like to share with you the two most frequently asked questions about my attending these two shows. Inevitably and without fail, when I would tell someone of my concert plans, they would ask me “Who?” in regards to Clem and “Why?” about going to see Britney. I would mumble something along the lines of, “If you have to ask…”, for the first one and then I’d steer them to the band’s wikipedia page. As for the other question, the only thing I felt comfortable saying was that I was merely accompanying Fehmeen but I had a sneaking suspicion that they would break out my iPod and bust me for my five song Britney playlist. (Just an fyi here, but I easily have three times as many Clem tunes on the very same player, thank you very much).

Anyway, thanks for reading and enjoy the reviews.

Ticket Price and Availability: Tickets for the sold out Britney show were not only expensive, they were fairly difficult to come by as well. We had to take out a second mortgage on the house in addition to raiding Emma’s college fund (think scholarship, my little Bug). Fehmeen was also verbally brow-beaten by a Ticketmaster agent on the phone about my “handicap” and the potential ramifications if we were lying about my “disability” in order to score our seats. As far as acquiring tickets for the Clem show, all it took was one email to Bruce at the band’s record label (remember my review of the new album a few months ago) and I was on the guest list. That was it. Edge: Clem

Venue Cache: While it’s fun to witness the spectacle of a ginormous arena show at a venue like Oracle, there is nothing cooler than catching a band in a small club like The Bottom of the Hill. Edge: Clem

Parking: Arriving early landed us a primo spot on the street about a hundred feet from the front door of the club and that was a good thing. Parking behind a currently occupied RV and stepping in dried up dog crap as I exited the vehicle, not so good. On the other hand, was it worth the twenty-five sheckels it cost to park in the handicap/luxury box lot at the arena? Hell yeah, considering it took us all of ten seconds to leave the lot when the show ended. Edge: Britney

Handicap Accessibility: I’ve got three words for you: Red Carpet Treatment. The second we had our tickets scanned at Oracle, we were partnered up with an employee who not only escorted us to our seats but verbally swept the path clear for me and my wheelchair. At the Bottom of the Hill, it was more along the lines of, “Have fun, dude.” Edge: Britney

Quality of Seats: While it was amazing to be on the floor of the club, approximately thirty feet from the stage, it quickly turned annoying as row after row of upright adults stood in front of me. As for the Britney show, our visually unobstructed seats were located on the lip of the luxury box level. Edge: Britney

Souvenirs and Swag: Where else could you purchase four CDs and a tour shirt for fifty bucks AND get to laugh at your friend named Parker as he actually wears the shirt during the show? Not at the Britney concert, that’s for sure. The closest I got to a merch booth at Oracle was the guys selling bootleg Britney t-shirts on Heggenberger Rd as we drove in. Edge: Clem

Hanging with the Peeps: Either I am out of the loop fashion-wise or someone dosed my coke with no ice but apparently in order to be an in-style urban hipster at the Clem show, you had to be a dude wearing skinny jeans, sporting a fully cultivated and impeccably manicured beard. As for the Britney show, you were ‘in’ if you were a twenty-something woman or a gay man who liked to dance. Edge: N/A

Inappropriate Behavior: If you are in a non-crowded club and you have full use of your legs, please do not stand directly in front of the guy sitting in the wheelchair. It’s effin’ rude. If you have tickets in the luxury box section for a concert at Oracle and you yourself are not or you are not with someone who is handicapped in any way, do not move yourself into the row reserved for people with special needs. It’s disrespectful and distasteful. Edge: Neither

This Concert is Brought to You by: Practically everywhere you looked before the show on stage and between acts on screen at Britney, there were ads for Virgin Mobile. Even if I could talk or text, I would boycott their services on principle. As for Clem, it was as pure as the driven snow, baby. No ads. Edge: Clem

Opening Act: As far as openers go, Pepi Ginsburg (attired in her satin blue jacket with the embroidered butterfly on the back) was a little rough around the edges but the Heligoats were hella cool (I bought their CD) at the Clem show. At the Britney show, there were four too many Pussycat Dolls prowling around the stage. Who would’ve thought that I could ever be bored watching five ‘hot’ women in knee-high boots shaking their moneymakers? Edge: Clem

Headliner: Here’s the dilemma: How do I choose between a pop singer with an ultra-elaborate stage show who lip-synched the entire concert or a musical genius who sleepwalked his way through his show?

The Final Analysis: In the end, I suppose it all boils down to how much fun I had and how I felt as I exited each show. Based on the numbers, Clem won more categories but Britney won my heart. Winner: Britney

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Tonight

Happiness is spending the evening with my two best girls at the mall.

Usually, an outing like that transforms itself into a chapperoning for two event for my wife.

But tonight was different.

Tonight, I held my baby in my lap, both of us savoring the feel of the wind blowing in our faces, as we crossed Hillsdale Blvd in my wheelchair.

Tonight, I showed Emma how to hold her bottle upright so she could feed herself while Fehmeen paid for an item at the counter of a store.

Tonight, as Fehmeen stood in line at another store, I shared a cookie with the Bug. The two of us dropped more crumbs on the floor than we actually ate but who cares.

Tonight, I grinned from ear to ear while we drove home listening to the beautiful sounds of my two best girls singing and squealing to the happy tones of the Wiggles CD I burned for them yesterday.

Tonight, I really felt like I really contributed.

Tonight, I felt like a parent.

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I Love the Smell of Napalm in the Morning

For those of you who know my wife, either in real life or from these postings, the following list of words and phrases should come as no surprise to you when describing Fehmeen: Incredible mother, devoted sister, loving and compassionate wife, and talented educator. One could easily use the term grace under pressure to describe the strength of her character. (Some people have even called her a ‘modern woman’, for what that’s worth).

But despite all those accolades and platitudes, there is one phrase in particular that seems to adequately encapsulate the essence of Fehmeen (at least on the two occasions that I have been witness to) and that phrase is ‘Deathly afraid of insects’.

Allow me to explain with this (hopefully) amusing anecdote.

A few weeks ago, when the Bay Area was in the midst of that late April heatwave, Fehmeen accidentally left our sliding glass bedroom door wide open overnight. We discovered the indiscretion only after I emerged from my 6:00 AM shower to find the ceiling and walls of our room redecorated with all manner of native San Carlos mosquitos and other assorted winged insects. Fehmeen claimed the number of bugs to be “at least ten dozen” but an independent audit found the total to be closer to fifteen.

Rendered immobile by fear and refusing to set foot in the bedroom, Fehmeen turned to me for guidance. Forsaking the opportunity to offer up the suggestion that she ”Call Jim”, I instead told her to get my dad. Judging by how quickly she bolted out of the room and into the hallway, I think she liked my advice.

What unfolded next was positively surreal. It was 6:30 in the morning and I was sitting in the corner in a chair in my boxers watching my dad climb up and down a ladder, dustbuster in hand, as he hoovered the invading insect horde from the far corners of the cathedral-ceilinged bedroom. Fehmeen was directing traffic from afar, keeping everyone up-to-date as to the locations of any as-yet-uncaptured renegade bugs. Even my mom was there in her robe telling us stories about her own fear of insects. The only thing missing was Emma stumbling around in her sleeper screaming “Mama” and “Dada”.

When Fehmeen gave the all clear sign, my parents took the ladder and dustbuster and exited the room. Fehmeen finished dressing me and we left for school. As we drove southbound on 280, I felt compelled to tell her, “Hey, at least they weren’t cockroaches. Like last time.” She agreed and laughed.

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Making the Movie Part 2

Important Note: Please read yesterday’s entry, entitled “Making the Movie Part 1“, before delving into this one. It should go a long way in explaining what’s been happening with the ALS Boy crew lately.

All caught up? Cool. Read on.

Day One of Filming (continued)

5:00 PM, Backyard. Fehmeen arrives home from school just in time for her close-up. Alaa directs us to walk hand in hand around our backyard. We comply with his request in our new tandem walking technique: A face to face and arms distance apart method we refer to as ‘The Seventh Grade Dance’. Fehmeen and I even manage to steal an eskimo kiss on film while the director is inside the house. Sorry, Alaa.

6:15 PM, Dining Room. The crew captures the family sitting around the table enjoying a delicious penne pasta and salad dinner. Emma ends up wearing half as much red sauce on her face as she actually gets in her mouth.

7:00 PM, Living Room. Alaa decides that he wants to film Fehmeen and I playing with Emma. Unfortunately for everyone involved, Emma’s cuteness and subsequent filmability peaks sometime in the middle of the guys’ heated conversation about f-stops and light meter readings. The Bug does her best to cowgirl up but it is hard to be adorable when you’re wearing a pair of cranky pants.

Day 2 of Filming

9:00 AM, Stanford University, Computer Lab. My valet and I meet the fellas in a dimly lit sub-basement room on campus in order to film me typing on a keyboard while sitting in front of an enormous wall-sized projection of my blog. It was beyond cool looking. At one point during the morning when they were filming something on the screen and I noticed that the silhouette of my head was in the frame, I discovered that I could make my ears move up and down. Look for that little easter egg in the finished product.

11:45 AM, Chili’s Restaurant. Lunch Break. I am pleased to report that my Italian man-servant and I did not witness any vomiting children during the course of our meal.

2:00 PM, Parking Lot, Menlo Park. Alaa, David, and Anthony attach the camera to a four three-wheeled aparatus to better film me as I wheel around the surprisingly busy parking lot. Much love to the Menlo Park PD for cordoning off the fans and the paparazzi while we finish our work.

3:30 PM, Tobias Physical Therapy. The entire shoot wraps on a somewhat physical note as Alaa captures me getting my sweat on. A big thank you goes out to Robin for allowing us into her workplace.

Final Thoughts

While the experience as a whole was well worth the time and energy I personally invested in it, I had no idea how intrusive and contrived the whole process was. I incorrectly assumed a certain level of spontaneity.

Would I do it again? In a heartbeat.

Alaa tells me that the film will screen around June 10 on the Stanford campus. I promise to post details when I confirm them.

Oh yeah, btw, Emma survived her shots. She was originally scheduled to receive a whopping seven of them but we were able to delay four of them for next time.

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