Me Asking You Why

Every so often, when the mood strikes, I like to look within myself and ask aloud those questions that have found their way to the forefront of my mind.  Instead of being rhetorical in nature, I am soliciting your participation in the form of an actual answer to any or all of my current queries and navel-gazing observations.  Thanks in advance for your help in this matter.

Why does Volkswagen have such odd sounding names for their car models?  I realize that names like Barracuda and Mustang were already taken but Routan and Toaureg?  C’mon man!

Speaking of those cars, why do people play that Punch Dub game every time they see a VW on the road?  Better yet, is this a real game or is it a made-up one created as a television marketing tool?  My friends and I used to hit each other when we caught a glimpse of an out-of-state license plate but never for a particular vehicle.

Why did I wake-up with a hair-do similar to that of bowling champion Big Ern  McCracken from the movie Kingpin? 

Why would anybody choose to watch a full-length feature film on the screen of their smart phone? That’s not even considering how crappy the sound would be and all.

Why do I have that old Orleans song Still the One running through my head right now?  We’re still having fun and you’re still the one.

How fun has it been watching the San Francisco Giants this season? More specifically, how many shades of awesome has September baseball been?

Conversely, why have the 49ers started off the year so blankety blank blank blank?  At least my fantasy team, the SituJason, got off the snide this week with our first win.

Why are you singing Still the One right now? Could be worse, I could have said It’s a small world after all.

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Change of Address

For the duration of our residence in our home in the city of good living, my primary seat for just about anything you could imagine me doing has been on the padded bench at the kitchen table.  I ate there, drank there, feeding tubed there, read comics, magazines and Kindle books there, entertained visitors and held court there, and even watched tv there.  But hands down my favorite activity to do there was blogging on my Eye Gaze as pictured below.

Lately though, it has been getting increasingly more and more difficult to maintain my balance through the trunk of my torso when I try to stay seated for any length of time beyond the time it takes to finish a healthy and hearty breakfast of oatmeal and apple sauce.  It was taking a toll on my neck and back and worst of all I was beginning to dread my time spent writing on my computer.

So, at the gentle but rather insistent prodding and suggesting of my friend and physical therapist, I have decided to make the move to more comfortable pastures and found a better place to blog pictured below.

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Infamy Can Wait

Earlier this summer I had an interesting concept for a short film.  Unfortunately for viewers the world over, the window of time for this sure-fire viral video has slammed shut due to my inability to shower in the upright position.  I had emailed my shot by shot instructions to the Italian Man Servant/Flip Video Camera Operator but the actual filming never happened.

So instead of allowing another brilliant idea to disappear forevermore into the infinite vacuum of time and space otherwise known as my Eye Gaze hard drive, I figured why not publish it on my blog for all to see.  If any aspiring videomaker (with or without a terminal neuromuscular disease) wants to pick up where I left off and actually shoot the damn movie, you have my blessing and endorsement so long as you credit me in the closing titles with Original Concept by Jason Picetti then we are cool. Enjoy.

I Am Crocs

I would like to ask for your help to make a short movie about my crocs. You will be the camera man. I want to film the crocs as they go about their daily duties. Only the crocs will be on screen, not me, not Fehmeen, nothing but the crocs. Very important.

Shot 1: Fehmeen picking up crocs from shower and putting them on my feet as I lie in bed. Stay on the crocs as she sits me up and transfers me to the wheelchair. Follow the crocs as I am wheeled to the sink. Pause camera.

Shot 2: Follow crocs as she transfers me to the toilet. Only press pause after my boxers are resting on the crocs for a few seconds.

Shot 3: Once I am standing in the shower, begin filming the crocs from the ground of Fehmeen’s shampoo area as the water warms up. Continue shooting the crocs until after the shampoo is washed out of my hair.

Shot 4: Stay on crocs as Fehmeen seats me in the wheelchair on the towel. Follow the wet crocs as they are removed from my feet and tossed on the shower floor. Pause.

And that is it. Thanks for doing this for me. It will look so cool.

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Eight Names on a Sh!t of Paper

Tilted back in my wheelchair under the blinding warmth of the adjustable lamp in the hygienist’s workspace, I stare thoughtfully at the typewritten names that comprise the list that is carefully thumbtacked to the wall and wonder what, if anything, it is that the eight of us have in common other than the fact that we are all patients of Ross O Williams, DDS.  My mind swims through the ocean of possibility and incalculable probability that has brought us together to share the same uncomfortable vinyl chair on this particular day between the hours of 8:15 and 3:45 and when, if ever, we will have occasion to be bonded together again in each of our lifetimes.

I’m just happy that it wasn’t a longer appointment. Or a longer list of names.

And as far as the rest of the title is concerned, that is all about our little girl.  You see, Emma doesn’t like it when people say bad words.  To quote the pre-school aged genius, “Mama, another word for shit is poo.”  And when Fehmeen casually mentioned to the two-and-a-half year old that she was writing on a sheet of paper, Emma chimed in with the following: “Don’t say shit of paper Mommy. Shit is a bad word.”  That conversation was followed by a lengthy discussion between mother and daughter on the etymology of -it and -eet words and how different the two similar sounding words really are.

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Neurological Jiffy Lube

Had my three month (or 3000 miles) appointment at the ALS Clinic at UCSF yesterday.  While the one-stop shop model is super convenient for seeing the entire team of doctor and specialists, it does make for an extremely long day being cooped up in a relatively tiny examination room for three-and-a-half hours.

They came in one by one, ready willing and able to answer all of our questions.  In order, we saw the respiratory therapist, the MDA representative, the social worker, the speech therapist, the nutritionist, the physical therapist, and the neurologist.  The nurse and the occupational therapist were not in-clinic.

Usually we have at least one question of immensely monumental significance — as well as a series of follow-ups — to ask the team and yesterday was no exception.  When should I think about getting a tracheotomy?  Is it a common procedure amongst ALSers?  Is this even something that I would want to get done?

Our queries were answered with the clarity of years upon years of experience and expertise.  I was forced to confront my fear of using the Bi-Pap machine by my own neurologist who, along with Fehmeen, was able to spell out in terms that were abundantly clear to even a dense and stubborn emmeffer such as me that I either learn to love it or die not trying.  (At least that was the message I took home).

As I headed out the door and down the freeway towards our weekend in the city of St Chuck, I am filled with a thousand thoughts of decisions that need to be made before my next 3000 mile neurological oil change.

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If I Show You Mine, Will You Show Me Yours?

Now that the new Fall television season is upon us, our DVR is preparing for an onslaught of series recordings to begin occupying space on its hard drive.  Here is the comprehensive list of shows that we love to watch at our convenience without commercial interruption:

The Office – This show really fires on all cylinders when the producers involve the entire cast and not just the principal players.  A perennial go-to favorite regardless.

Weeds – We’ve been absolutely loving this new season.  But that’s what we say every year.

Parenthood – This one is more in Fehmeen’s wheelhouse than it is in mine.  I pay attention occasionally when it gets good.  Keyword occasionally.

Eastbound & Down – Only four more days until the premiere on Sunday! Kenny Powers rules!

Real Housewives of DC – Technically this is a holdover from the summer but I can never get enough Bravo-style reality show drama.

Boardwalk Empire – I’m not quite sold on this one yet.  I still remember all the hype about John from Cincinnati.

Bored to Death – This little gem also returns for a second season on HBO this Sunday as well.  Best show on television imho.

Now that I’ve shown you mine, I would love to see yours — DVR record list, that is.

Seriously, post your list.  Please.

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Positively Mental Octopus

Yogi Berra said that ninety percent of the game of baseball is half mental.  Always having been a fan of many of Mr Berra’s nuggets of wisdom, I now believe this quote is more applicable to living with ALS instead .  At least that’s how it has been in my experience.  But then again, I have always done a lot of my el eye vee eye en between my ears.

(Go back and pretend that you are spelling out the word livin’ in the preceding sentence and it will make a little more sense.  Bonus points for th first person to name the movie and character that reference came from).

For the uninitiated amongst you regarding the physical aspects of a neuromuscular illness like ALS, I can tell you that three years ago I could walk.  These days I have a difficult time holding up my upper body while seated in my manual transfer wheelchair.   My muscles no longer are able to do the job they had previously done for the first three point seven decades of my life.  The physical deterioration of my body is undeniable.

But that is only a small part of the battle.  The real fight occurs in my mind.

I wage a daily war beneath my skull in an attempt to make real the old cliché mind over matter.   There are moments each day when one of my legs is stiff with spasticity and no amount of familial or caregiver TLC and bending is going to do the trick.  I am forced to tune out the outside world and focus inward on relaxing the area of my body that is acting in an uncooperative manner.  Winning strategies and techniques vary greatly but eventually, the muscles calm down to such a degree that I am able to get done whatever it was that needed doing in the first place.

But that is not the aspect of my mental octopus that I wanted to talk about in this post.

For my money, the most intense and difficult piece of the mental puzzle is coming to grips with letting go of something that I had been doing for as long as I can remember.  The best way that I know how to describe this thought process is to walk you through my ALS-induced shower routine.

At first, nothing was discernibly different except for the fact that I had to be careful not to lose my balance.  One year later I required assistance stepping over the side of the tub and into the shower.  Then came the portable plastic grab bars (that you may have seen advertised on television).  The next stop was the shower remodel and the installation of a set of permanent metal grab bars.  I held on to that bar both literally and figuratively for over a year.  I was so proud of the fact that I could still stand and be given a shower that it almost felt as if I still had the upper hand on the disease.

But that all began to change a few months ago.  The lengths of the showers were decreasing as my ability to stand and hold the bar began to diminish.  I spent my mental capital trying to hang on to the remaining vestiges of what I believed to be the Last Stand of ALS Boy.

As I struggled to remain upright and erect (he he) in the shower, an interesting thing happened between Emma, Fehmeen and a box of cookies.  Emma had earned the privilege of gnawing on the enormous cookie because she had eaten all of her dinner but things were not going the way that she had envisioned them going.  She wanted to hold on to two cookies and when Fehmeen told her that that was not going to be a possibility, Emma said that she didn’t want any cookie at all.  When Fehmeen explained to our two and a half year old that that line of thinking would only end up hurting herself, it was almost as if my wife was speaking directly to me and my issue with the shower.  Why should I have to suffer through a potentially  dangerous and ultimately unsatisfying shower standing up when a more viable and beneficial alternative existed.

A few days after that discussion about the cookies I began to feel the effects of a lingering cold and not enough sleep.  There was absolutely no way in hell that I could man up enough to stand in the shower.  When it was suggested that I stay seated in my transfer chair for the duration of my shower, I literally sat at the opportunity.  Why should I waste my energy wrestling with the concept of a paradigm that had worked splendidly for me for a long time and whose effectiveness has clearly had its day in the sun?

The answer to that question became abundantly clear as the warm water washed over my smiling and relaxed face and I was able to truly enjoy and savor the shower experience more than I had in months.

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Loogeyman

After being unceremoniously evicted from the Cap house in San Francisco by an unscrupulous landlord who wanted to move back in to her home during the early days of spring 1994, I made the decision to strike out on my own and rent a one bedroom apartment on the corner of Taraval and 42nd Ave in the Ocean Beach neighborhood of the  City’s Sunset District.

My bedroom was situated on the relatively busy Taraval Street right next to a Muni streetcar stop.  In addition to the (again) relatively cacophonous drone and clank of the L-train rolling down the rusty rails either towards the end of the line a few blocks away or towards the heart of the City in the opposite direction, there was always one thing that I could count on to greet me day in and day out.  It was the presence of the person I called the Loogeyman.

Every morning about six a.m. I would hear the sound of someone attempting to summon up from his lungs through his throat a phlegmy ball of snot in order to send it on a one-way trip from his tongue to the cold concrete of the sidewalk.  In other words, this dude stood outside my window day after day after day trying to hock a loogey until his train could arrive to take him away to parts unknown.

His incessant hock hock hocking used to drive me bat-shit crazy.  I suppose it’s more than a little ironic that I have been thinking about the mysterious Loogeyman every single time my overworked lungs and throat struggled to expel the demon phlegm from the depths of my being these past two weeks.  I reflected back on his unflappable form to deliver the mucousy goods rain or shine and how I wished that some of that magical hockaloogey mojo could temporarily inhabit my body so that a brother in the neurologically challenged fraternity could get a little relief.

And then we discovered the trick.

If you take the wand end of the suction machine and place it firmly on the rear of my tongue, you can extract quite a bit of the gooey green stuff.  The only problem with this scenario is that the so-called mystery spot happens to be my extremely sensitive gag reflex.  With every drop of phlegm that gets pulled from my throat brings me perilously close to tossing my cookies on whoever happens to be in the immediate vicinity.

Fehmeen loses heart after just one successful pass.  And I can’t say that I blame her.  I couldn’t do it either.  My caregiver Lhito, however, is always up for the challenge.  He stands over me, wand in hand, ready to vacuum up the phlegm from my throat like so much dirt on a carpet.  The absolute relief I feel once the offending phlegm has been removed is worth every second of uncomfortability that I had to endure on its way out.

In fact, I would go out on a limb and say it feels a tiny bit better than if I had to have hocked it out the old-fashioned way.  No salty aftertaste on the tongue and no unsanitary spitting.

Somewhere in San Francisco, the Loogeyman is envious of my power.

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Only Emma

Only Emma could pull off wearing a watch despite having no idea of how to tell time.

Only Emma could tell Papa when he came in to wake her up from her nap the other day that she needed “ten minutes more.”  Funny thing was, she didn’t even have the watch yet.

Only Emma could meet a boy named Magnus at pre-school and walk hand in hand with him to go look at some butterfly.  That’s my daughter, young man.

Only Emma could stand next to Fehmeen and ask, “Mommy, am I wearing a diaper?”  The response of  ‘No Emma’ was followed by another “Mommy, am I wearing a diaper?” Again, ‘No Emma’ was Fehmeen’s answer.  A third and frantic “Mommy, am I wearing a diaper?”  was accompanied by tiny rivers of pee streaming down her legs.

Only Emma would purposely hide her lunch last Friday at school so she could indulge in the pizza that was purchased for the class.

And finally, only Emma could be this beautiful.  Daddy loves you more than he could ever say.

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Breaking Bad(ly)

There’s not much in this whole wide world that makes me happier than when I convince Fehmeen to break bad.  Now I’m not talking about felony, misdemeanor, or even your typical run-of-the-mill citation kind of breaking bad in this case.  No, I’m referring to the kind of bad that goes and gets you tossed out of the “I’ve never broken a single solitary rule in my entire lifetime except for this one” club.  Oh yeah, that kind of trouble.

I’ll never forget the time that we were living in Sunnyvale and she had decided (and I had of course enthusiastically acquiesced) that we were going to check out the latest Jennifer Aniston star vehicle that had invaded the local multiplex.  Just as we were about to enter the theater, Fehmeen noticed that she still had over three-quarters of her steaming hot grande latte from Starbs in her hand.  She immediately ambled towards the rubbish bin to dump the contraband cappuccino before we had to face the eagle-eyed gaze of the teenaged ticket taker.  I stopped her before she did something she would undoubtedly regret.  When I suggested that she sneak the coffee in under her coat, Fehmeen began to peer nervously over her shoulder for the outside food police to haul her off to movie theater jail just for even considering the subterfuge as an option. It took several minutes of cajoling on my part but in the end, she did it.   She was so pleased with her illicit activity, she didn’t seem to mind so much that the movie (predictably) sucked.

Now that brings us to the present.  I have been struggling mightily with this persistent and hacking cough for so long now that swallowing my pills and even the required amount of Nyquil had become more of a belabored chore than usual.  My heart almost stopped beating when my usually darpook wife offered to not only pour the cough syrup down my feeding tube but to crush the pills and jam them down there as well — both of which we were advised against doing by the tube people.

And you know what, she didn’t even look the slightest bit nervous as she was breaking bad.

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