Senses

The only thing better than having Emma sit next to me on my recliner when we watch Beauty and the Beast or Tangled or Up together while she makes short work of an ice-cold grape popsicle is when she eats fluffy microwave popcorn from an ornately decorative San Francisco Giants souvenir cup from Opening Day of the 2011 season. Even though the BiPap mask is covering my mouth and nose, I can smell the salty popped kernel scent as clearly as I can hear her teeth crunching down on each and every morsel of the lightly salted snack food. And from her perch atop the recliner’s armrest, I can feel every ounce of her thirty-five pounds leaning up against me and it’s the best feeling in the world.

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B & W

Many thanks to my cousin Nicole Hamilton for taking these amazing photographs. There are absolutely beautiful. Quit your day job now, kid*, because you’re going places.

*I am twenty days older than her.  🙂

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Writing on the Wall

Upon my confirmation of her as my Facebook friend about a week or so ago, I decided to take a look at her profile to see if her face was more recognizable to me than her name was.

After flipping through her photos for a few moments, I decided to check out her wall posts. I discovered that a mutual friend had written something referring to me and another classmate of ours.

To the best of my recollection, it said, “…you know about Tom A and Jason Picetti then…”

Her response was along the lines of, “I’m new to Facebook etc…”

She didn’t pick up on what our mutual friend was trying to communicate to her. And to be quite honest with you, I didn’t really understand what he was getting at, either.

I clicked on over to Tom A’s page to what was going on over there but after a few quick minutes of checking things out, I put my curiosity on hold and bailed for a different website.

Several days later, I noticed Tom’s name appearing on a different friend’s wall in my Top News feed on my homepage.

It was then that I discovered that Tom had spent the last five years with cancer and had only just a few days earlier passed away.

* * * * *

My condolences to Tom’s family for their loss.

* * * * *

Upon reading about his illness and passing, our sharing a place on someone’s wall post made complete sense to me now.

Of all the students in the Capuchino High School graduating Class of 1987, the two of us apparently had the most Wall-worthy backstories (courtesy of our diagnoses, I’m assuming).

It’s not the fact that I’m particularly private about having ALS — have you read the title of my blog? What it boils down to is that even though I’m extremely open about my life and what it has become these past three years, reading what it said on the wall that day was the first time (since the early days of my diagnosis) that I became acutely aware of my own mortality. Just to see with my own two eyes that classmates I haven’t thought about in over twenty years were aware of my circumstances just kind of freaked me out.

The feeling of dread I experienced that day subsided after several hours but the writing on the wall will linger with me for far longer.

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Spoke Too Soon

Once upon a lifetime ago, there was a man who could stave off a cold by sheer force of will. He had the ability to stop that little tickle from taking root in the base of his throat just by using his head to convince his body that it doesn’t have the time or the desire to deal with the inconvenience of being ill.

Well, apparently, that man has gone and lost his mojo.

These days, that very same man can’t even kick a simple cough and cold, even though he’s had it for almost a week and usually during that time frame it starts to subside just a little bit, but it wasn’t until four straight nights of little to no sleep that the tide began to turn in his favor because of the five superball sized globs of phlegm that Fehmeen had to fish out of the back of his throat using the suction machine when he lacked the ability to hock the snot out on his own.

And although each trip to the fishing hole causes him to drool incessantly and hack cacophonously for about five minutes following, it’s the only way for him to get any relief.

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3:20ish

It felt as if I was resting most comfortably atop an infinite amount of fluffy cotton puffs. No aches or pains were registering on the radar. My breathing was audibly soundless and completely in control, which was a departure from the newly established status quo these past few nights since I’ve acquired this cold.

The only issue I was having was that I was now completely awake and consciously counting the sheep as they gently leapt from atop the night nurse’s quiet snores and out the window and into the darkness of the evening.

I was at a crossroads in my head and a decision had to be made. Do I remain in this perceived place of relative comfort and do my best to fall asleep again or do I put my faith in the notion that getting repositioned to my side would do the trick like it always does?

The instant I saw the numbers on our digital clock with both of my eyes, I knew I had chosen poorly. It was 3:23 AM.

Phlegm thickened saliva accumulating in my left cheek, grunt for suction, Bzzzzzzzzzz (sound of suction machine suctioning), coughing coughing, eyes closed to sleep, hack hack hack, cough cough COUGH COUGH, dislodged phlegm ball now at the base of my tongue, grunt grunt GRUNT for suction, Bzzzzzzzzzz Bzzzzzzzzzz, slithering phlegm escapes back down my throat due to involuntary swallowing reflex.

Eyes closed to sleep.

Hack hack cough cough grunt for suction

Rather than repeat this drama for the remainder of the evening, I was relocated to the recliner. Reunited with my trusty Giants wearable blanket, I finally drifted off to sleep (for about an hour) dreaming about outside food.

It was 4:20ish, of course.

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If It’s Not One Thing, It’s Another

Just when all the technical difficulties got solved, leave it up to me catch a cold. Posts will have to wait until tomorrow to get written. Sorry. 😦

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Happy 400th

On the occasion of this being the 400th post to my blog, I spent some time wracking my brain to come up with a clever and creative way to celebrate the historic event.

When all was (figuratively) said and done, I decided to keep it simple and merely upload a picture.

I’m 95% certain that I haven’t posted it here before but if I did, oh well!?!

For the record, this photo was taken at Fehmeen’s birthday party. We are singing a second rendition of Happy Birthday, this time for Emma (and Daddy). And no, I haven’t switched allegiance away from the Giants. The only reason we have that shirt is because one Halloween our school staff decided that we should all dress up like pirates and swashbucklers. Not wanting to commit to the letter of the law, Fehmeen and I went online and purchased discounted Pittsburgh Pirates shirts.

Here’s to the next 400!! Thanks for reading.

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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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Reunited and It Feels So Good

At approximately 5:30 PM last Wednesday afternoon, my link to the outside world decided to up and quit on me.

After a year being joined at the iris and pupil, the eye tracker in my eye gaze machine died a warrior’s death while valiantly serving me in the writing of my book.

A list of contact names and numbers was quickly compiled and by Thursday evening, a course of action was decided and embarked upon.

We would be sending the broken piece of equipment back east to Dynavox for repair or replacement. Depending on how quickly my insurance company could process and authorize the transaction, I was given a two-week turnaround time frame.

Two weeks?

This is Kaiser we’re talking about.

Two months, minimum.

In the meantime, between now and the next time the benevolent gods of expedited paperwork feel like accepting my meager sacrificial offering of an entry level bureaucrat and an old-fashioned, hand-cranked ditto machine, I have been given a loaner eye tracker to use.

Jennifer from the UCSF ALS Center managed to not only find an unused device but she delivered and installed it as well. Thank you.

Major props to Fehmeen and my dad for hitting the phones hard on my behalf and for getting me back in the game sooner as opposed to later. As you are so fond of hearing the Dynavox saying:  Thanks thanks thanks thanks thanks thanks thanks thanks thanks thanks!!

Be sure to come back tomorrow to find out how I (barely) survived five days without the internet.

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All is Well

Just wanted to drop a quick note telling everyone that I am still here.

The reason for my recent lack of posts these past few days is due to a busted eye gaze.

I’ll elaborate more tomorrow.

Happy to be back.

Word

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