Feeds:
Posts
Comments

Archive for May, 2011

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.

Advertisements

Read Full Post »

Emma has a serious case of Dance Fever!

Major props to Dan for converting my old tapes into mp3s.

Read Full Post »

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.

Read Full Post »

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!

Read Full Post »

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.

Read Full Post »

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

Read Full Post »

Back in Biznass

Hey there, everybody!

First of all, please allow me to apologize for the lack of new posts here but I had no idea that you guys would come up with such thought-provoking questions for me to mull over and answer. Thank you for participating.

And yes, Traci, I know I still owe you my favorite concert but I need a little time to access my hazy memory banks for my ultimate show. I promise a separate entry (a la The Concert Project blog) as soon as I think of it.

Now, truth be told, answering a couple handfuls of questions wasn’t really what prevented me from posting up any new content these past four days. The issue came in the form of a feeding tube malfunction.

Around Thursday of last week I began to notice an uncomfortable feeling on my stomach just below the incision on my skin where the feeding tube enters my body. It didn’t hurt at that time, it was just noticeable when usually it’s not. Over the next few days, that feeling began to spread out and become painful, particularly to the touch.

Two days later when the liquid, life-giving foodstuff known as Boost began to sit stagnant in my tube instead of draining into my belly, we knew that we were dealing with a (semi) clogged PEG tube.

We left messages with the doctors at interventional radiology begging for them to get us in there when they returned to work following the weekend to switch out the broken tube inside me for a brand new one.

In terms of feedings in the interim, we broke out the old syringe and plunger kit in order to help push the dinner into my gut when the gravity method stopped working. Not the most pleasant feeling in the world but it sure beats going hungry.

As of 10:30 this morning, I am rocking that new tube and I’m happy to report that it works like a charm so far. The wacky folks in radiology even put a reminder sticker on the side of my feeding apparatus to come in for a change in six months or after 900 feedings, whichever comes first.

Read Full Post »

Older Posts »