New Super Powers

Since we are currently smack dab in the middle of superhero season in the movie theaters (X-Men: First Class, Green Lantern, and Thor) and in the news (Peter Parker was recently killed off in Marvel Comics’ Ultimate Spiderman latest issue), I thought that this would be the perfect opportunity to share with you some of my newly acquired super powers of the past three weeks.

• The (near) inability to balance myself while seated due to ever-weakening trunk muscles. This phenomenon is most noticeable while sitting on the toilet. Thank goodness there’s a wall on my left hand side in the bathroom.
• Off the charts levels of regularity. Existing on a liquid diet means increased movements of the bowels. I have most definitely shed the label of One Dump Chump as of late.
• A new and exciting way to save a little bit for later. Somehow, someway, I created a silver dollar pancake sized globule of phlegm and managed to get it stuck to the roof of my mouth. If you think that’s disgusting, you should have seen it when Fehmeen scraped that bad boy out.

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My B2B Story

When it comes to communicating with the people around me, I am fortunate to have a couple different options at our disposal.

There is the eye gaze for when I’m home and plugged in. I believe that we’re quite up to speed on that machine, so I’ll spare you the ins and outs of the Dynavox. Then there’s this device that we call Low Tech and it’s comprised of a giant board with letters and words on it and a laser pointer attached to a pair of lensless glasses. I use the laser to spell out words and sentences on the board and it does an excellent job at communicating my thoughts. We also have a small sized board that we take with us when we’re out and about.

But then there are times when it’s just not practical or even possible to employ any of the methods described above. That is when we go really old school:  I use my voice and everyone with whom I’m speaking gets to play 20 Questions in order to figure out what I am spelling.

This is challenging for all parties involved for several reasons. Since my tongue doesn’t work any more, a lot of my letters tend to sound the same. This makes guessing on the listeners end an exercise of extreme patience. But most of all, if you are acquainted with my personality in the slightest, you would know that I don’t think like a normal person. Sorry.  🙂

Now, a few weeks ago when I was being stretched by Robin and Lindsey at physical therapy, they were chatting about the upcoming Bay to Breakers foot race. They politely asked me if I’d ever run or walked in it and I grinned my best Yes-I-Have grin to indicate that why yes, I had walked in it one year.

I opened and closed my mouth to let the ladies know that I wanted to expand upon the subject further.

In order to keep the pace of this narrative flowing the way it is currently flowing, I will cut to the chase and eliminate the trial and error process that Robin, Lindsey, and I went through to spell those three little words that I chose to summarize and encapsulate my one and only B2B experience.

And they were (in order):

R-A-I-N

N-I-P-P-L-E-S

Owwww

(No need to spell that last one out. That word remains intact in the old verbal arsenal still).

Anyway, it didn’t take them long to figure out that it had rained on me during the course of the race and that as a result of the subsequently soaked t-shirt I was wearing, my nipples ended up getting majorly chafed and, in turn, caused me a moderate amount of pain.

And that is my Bay to Breakers story.

And that we joined the race while it was already in progress so we could watch the elite runners climb the Hayes Street hill.

We’d still be playing 20 Questions if I wanted to include that piece of information.

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Five Days in Exile

Day 1:  Never having heeded the sage advice of the axiom that says that one should pace oneself, I decide that the most prudent course of action during this unprecedented period of time without the Eye Gaze is to completely immerse myself into the world of streaming movies on our flatscreen courtesy of our Blu Ray player and Netflix. Bad idea (jeans)!! Not only does Netflix streaming have just a handful of imminently watchable films and shows available online but I believe that I’ve discovered that my absolute limit on consecutive movies watched in a single viewing tops out at a hair under two-and-a-half.

Day 2:  I realize that I am missing out on my daily crossword puzzle fix and I can almost feel the knowledge draining out of head with each passing minute of my internet exile. Gone are fun factoids like “nearly closed” (ajar), “source of poi” (taro), and “end of a shoelace” (aglet). Rushing in to fill the void is a heaping helping of nothing. Seriously.

Day 3:  Reflecting upon my current predicament, I find myself jones-ing for information. About anything at all. What I wouldn’t do to be able to click on a hyperlink and read up on whatever strikes my fancy at that particular moment in time. I’ve gotten so used to mining the web for interesting stories that to suddenly be deprived of the ability to do so is just plain wrong.

Day 4:  In order to satisfy my seemingly insatiable need to take in information through my eyes, I start watching tv shows in foreign languages that have English subtitles. Did you know that the mayor of Bogota, Colombia employed people dressed like mimes to help regulate the (bordering on chaos) traffic flow of the capital city? I didn’t either. And that wasn’t the only thing he did while in office.

In hindsight, I can see now that watching shows just to read the subtitles was me hitting rock bottom in terms of my being an information junkie. Even though I’m quite pleased with the knowledge gleaned from that program, the point being is that it shouldn’t have gotten so far.

Day 5:  Not much I recall from this day except for visions of Mozilla Firefox dancing through my head.

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Oh See Dee and Me

The moment the camera crapped out on the eye tracking unit on my eye gaze machine I immediately thought about my pants and the fact that I was wearing the wrong ones.

(Pause for dramatic effect).

Although my current ALS-inspired lifestyle has weaned me off most of my old OCD-type tendencies, some habits are very difficult to break. For example, on the morning of the big Eye Gaze Incident of 2011 — heretofore referred to as EGI11 — I could feel it in the pit of my stomach that I was making a huge mistake when I told the caregiver that I wanted to wear my Gap jeans instead of my Banana Republic jeans.

(Another dramatic pause, this one a little more uncomfortable than the first one).

Basically, I have five pairs of jeans hanging up in my closet and I’ve kinda sorta gotten into the routine of wearing each one of them on a specific day of the week. The Gap jeans are typically worn on a Monday and the Banana Republic jeans are usually reserved for Friday and/or special occasions.

So, I knew right away that there would be consequences for making the decision to wear my Monday pants on a Wednesday but I didn’t expect the punishment to be as harsh as the EGI11 that got meted out to me not ten hours later.

(Pause for the end of the post).

Thank goodness I wore the right underwear, socks, and polo shirt. Who knows what would have happened then?

I promise to get to five days without the internet tomorrow. I got a bit carried away today.

And all that stuff about the undies, socks, and shirts was just a joke;  a little creative license to wrap up the story.

My only clothes-related OCD is with my pants, I swear!

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Setting the Record Straight

It has come to my attention that one very special and important member of our Adventures of ALS Boy blog-reading family is wondering how fiscally feasible it is for me to continually provide such lavish and extravagant prize packages to the winners of the caption contest week after week.

Well, NNN*, while I’m (legally) unable to divulge and discuss that topic on the blog, I am, however, quite willing to disclose to you the unbelievable pile of complimentary swag that you’d be taking home with you should you ever enter and win that aforementioned caption contest.

Are you ready for it?

This is your prize package:

Not only do you get a three-week supply of environmentally friendly hyena repellent, you have also won a dozen fill-in-your-own-amount gift certificates to the world famous Wah Jee Wah mobile restaurant, as well as a coveted backstage pass to meet Ranjit and Chad the next time their Tech & Talk show comes to town.

* NNN is a nicknani used to disguise the identity of the person about whom this entry is written.

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Best Laid Plans

Some of my best ideas have come to me while shaving.

Standing in front of the sink with a towel around my waist and staring at my Edge gel covered face in the mirror, the creative thoughts seem to flow inside my mind like the warm water draining out of the faucet as it washes the stubble off the razor blade in my right hand.

It was at intermittent times during this daily morning ritual that I gave birth to ideas that shaped my life for years to come.

Like the time I envisioned performing an a cappella version of Stand by Your Man (a la The Blues Brothers at Bob’s Country Bunker) with two of my teacher friends at our middle school talent show one year.

And like the time I figured out how to pop the question to Fehmeen in such a way that wasn’t expressly forbidden by the power that be, like at a baseball game or at a family gathering, in a restaurant or in a classroom, or in any way deemed too cliché.

It involves eighty-eight keys, a nursery rhyme and is a story for another time.

Anyway, since I no longer have the ability to stand and/or shave, I’ve been forced to find my creative juju elsewhere than over the bathroom sink.

This morning, however, was just like old times.  Almost.

As I sat in my shower chair, slumped over the white porcelain sink, my mouth open so the saliva-toothpaste mixture occupying my oral cavity could exit and find its way down the drain, I felt an idea brewing.

Last night I saw an ad for this new dish at Olive Garden called Pastachetti and I got to thinking that this was not the first time I remembered that one of their entrees had a ridiculous sounding and obviously made up name.

Pastachetti?  Are you kidding me?  How much of a bonus did they have to give to the MBA-degreed veep over at the OG corporate offices who stumbled onto that one?  It sounds to me like a hybrid of my college nickname (Pasta) and my last name (Picetti).

Come to think of it, that’s why I’m so annoyed by this latest turn of events.  And they didn’t even think to get my permission to use my good names.

So, my plan was to go online to do some research on all the other silly names for food at this particular restaurant chain and make fun of them in this posting.

Well, as the title states, the best laid plans yadda yadda yadda.

When I accessed their menu with my eye gaze, I quickly came to the realization that pastachetti was all that I had to go with.  (For awhile, the appetizer known as Fonduta was a candidate but sadly, it didn’t pass through the Google search filters for having a made up name).

Even though I didn’t have enough to go on, I couldn’t just let this delectable morsel of a topic be brushed off the table like so many crumbs.

I open the floor up to you, my wise and knowledgeable reader community, to access your memory banks and come up with names of dishes and meals from (any) restaurant that fit the criteria listed above.

Thank you.

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(Neverending Quest for Proverbially) Shiny Objects

I’ve got no problem admitting out loud that I have this tendency to get really into something at the expense of something else.  For seemingly days on end, this thing that I’m into becomes something akin to an obsession to me.  It’s the only thing that I want to spend my time doing, regardless of anything else I have on my to-do list to accomplish.

For examples:

When I first got Spotify, nothing else in the (online) world mattered to me except finding as many songs as I could to occupy my ever-expanding playlists.  Even though the initial fervor to which I initially hunted down those tunes has subsided to a large degree, the potential to catch the “finding more music” bug can strike at any moment.

Then there was the time where I rekindled my mania with searching for and finding FAIL pictures.  If you haven’t yet been acquainted with photos of the FAIL variety, allow me to introduce you to some.

From there, it was only a quick hop, skip, and jump until I discovered the subtle and subversive art of photo-bombing.  To photobomb is to hop into someone else’s picture at the last second.  Even though my dad and my Uncle Mike pulled one off at Benihana’s several decades ago, I had no idea that there were entire websites dedicated to chronicling the exploits of these picture spoilers.  And yes, that’s Michael Cera behind the parrots.

But recently I discovered my latest and quite easily most addicting — and not to mention most time consuming diversion of all:  The online Crossword Puzzle.  So far, I only allow myself to solve less than one per day (basically every other day).  I imagine that there are many more sites to discover, but right now I’m content with this one on sfgate.com.

So now you know what’s up when I’m not working diligently on my blog like I should be.

BTW, what’s a four letter word for long-tailed monkey?

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Bow Chicka Wow Wow

Working as a caregiver for ALS Boy Enterprises, LLC has quite a bit of down time.  Sure, mornings are seriously high volume — getting me out of bed, putting me on the toilet, transferring me to the shower chair, brushing my teeth, bringing me into the shower dirty and rolling me out clean, drying me off, dressing me (in socks and sandals, still), wheeling me out to the living room and plopping me in the recliner — but it’s usually over by 8:30 AM.

Once that first Boost gets funneled into my stomach and I get hooked up to the Eye Gaze, then begins the down time.  I still require suctioning (for excess saliva) every fifteen minutes or so and the occasional trip to the bathroom but for the most part, it’s fairly smooth sledding by and large.

Most of this non-focused-on-the-health-and-well-being-of-their-patient down time is spent watching sports or movies on television but it is not an uncommon thing to overhear the tell-tale sounds of fingers on smartphone.  Then there is a brief pause in activity, which is followed by an incoming message sound, which is then followed by another round of typing, more pausing, more typing and so on and so on.

Sometimes the texting gets so consuming and involving that the texter disappears from the living room and into the kitchen for upwards of thirty minutes at a time.

On one such occasion when the texter was busily texting away in the privacy of the kitchen for over an hour, I decided to help set the mood of their conversation by providing background music from my Eye Gaze machine.

I hopped on to Spotify — it’s just like Pandora but with the ability to search for and play specific songs and albums — and typed into the search engine a four letter word that starts with the first consonant after the fourth vowel in the alphabet and rhymes with peppercorn.

(The letter precedes Q, by the way.  But you knew that already).

To my absolute and uninhibited delight, up popped a seventy-five track compilation of two minute songs that easily could have been taken directly from those adult-oriented features alluded to in the paragraph above.

As ALS Boy transformed into DJ iGaze for the afternoon by playing tunes with titles like Make You Sweat and Mo Booty for the sole purpose of providing (in)appropriate music to text to, I can only speculate on whether or not my efforts were successful.  Or even noticed at all.

Bow chicka wow wow!!

FYI – I still have the entire playlist saved to a folder aptly entitled p***gruves2text2.  If you want to hear it, just come over and start texting in the kitchen.

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A Clarification and A Decision

The Clarification

I have come to realize that the opening paragraph of yesterday’s post might be misleading to most of my readers.

“Other than the most basic of necessities … I really don’t ask for a lot of things.”

I can see now how that statement paints me in an extremely angelic light but that was not my intended purpose.  In fact, I can be quite challenging to work with at times like when I’m stiff or tired or sick with a cold or practically any other time of the day.

I was only looking for an interesting and creative way to transition into asking my readers for something.  I did not intend to imply that being a part of my posse is a day at the beach or a walk in the park or in any way at all like living in a van down by the river with motivational speaking legend Matt Foley (as pictured at right). 

I apologize for any confusion my words may have caused.

*

**

The Decision

Thank you to all of you who either voted in the poll or took the time to post a comment (or did both) in my Conundrum entry from last week.

While your words of wisdom were encouraging and the votes were overwhelmingly — to the tune of 4 to 1 — in favor of rocking the socks sandals shorts look , I have made the decision to go against the popular sentiment.

I cannot, in reasonable, fashionable, good conscience, continue to wear the aforementioned Triple S combination.  I just can’t do it!  There was a time in my pre-Fehmeen life where I wore tapered jeans and bowling shirts every day but she broke me of that habit so much so that for a little while I almost considered myself a budding metrosexual.  Almost.

The only time anyone will see me wearing those Triple S’s is when I go to physical therapy each Wednesday.  I will continue to commit the crime of fashion solely out of respect for Robin and Lindsey, who dedicate an hour of their week to making sure my body gets stretched out.

It’s the least I can do if I want to continue receiving treatment from them.

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Conundrum

As the weather turns warmer and cargo shorts replace blue jeans as the official lower body wardrobe choice of ALS Boy, I suddenly find myself with an interesting dilemma.

Do I continue to do what I have done all winter long and by doing so risk drawing scorn and critical glances from friends and strangers alike or do I go back to the way it used to be last summer and offend the senses and sensibilities of those around me?

I suppose before I formally ask for your help with this decision I probably should clarify things for you a little bit.

I don’t wear shoes any more.  It’s been over a year since I’ve worn anything but sandals and I don’t plan on changing back to those curly laced torture devices during this lifetime.  That is not the topic of my moral quandary.

The issue at hand is that I’ve gotten really used to wearing socks with my sandals.  It’s been borderline acceptable to do this during the fall and winter months because I had pants on and the fashion miscue wasn’t eminently noticeable.  But now that it’s springtime, I’m fairly certain that the shorts-socks-sandals look just ain’t gonna fly with the people that have to be seen in public with me.

So what’s the big hangup then?  Why don’t I just go commando — sandals sans socks — like any other reasonably minded, semi-fashionable person would do and be done with it?

The answer to that million dollar question is that without socks providing a much needed buffer between the synthetic material of the sandals and my feet there exists an otherworldly funky stench so olfactorily offensive that you wouldn’t unleash it on your worst enemy.

Okay, I may be guilty of hyperbole here but I’m told it’s a little stinky.

So now that you are up to speed on the two sides of the debate, I feel that now’s the time to solicit your opinion about my next course of action.

Do I flaunt the rules of decent society and roll around town in a perpetual state of fashion faux pas or do I embrace my inner Pigpen and let the bodies hit the floor?

Your anonymous vote determines the fate of those around me.

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