Get ‘Em While They’re Hot

But then again, judging by the photos I’ve seen, they don’t come any other way.

The Always Looking Sexy 2010 Calendars are available now.

Click here to purchase copies for you and yours.

A Weighty Matter

One of the first things they tell you (over and over again) when you catch ALS is not to lose any weight. They want you to maintain as much of your poundage as possible because once it’s gone, it’s hard to get back. I must have royally pissed them off when I dropped a quick fifteen right out of the gate in the three months between my first and second clinic visits thanks to a no dairy, no wheat, no fruit, no sugar, no carbs, organic meat and vegetable only diet that I was on at the time. Truth be told, I was tippin’ the toledos at about a buck-ninety in those days so the el bees that were lost as a result of spending so much time and money shopping at Whole Paycheck were worth every dire warning and stern reprimand I received.

Once I came to my senses and began eating food for the taste again, my weight plateaued at one seventy-five for the next six month interval. While that was good news in and of itself, it was becoming readily apparent to those around me that I was struggling mightily with feeding myself. Despite my family’s valiant effort to stuff my pie-hole with yummy and carby foodstuffs, I still managed to lose ten pounds by my next clinic visit. This time, in addition to the usual choral arrangement of “Don’t Lose Weight” (sung to the tune of “Three Blind Mice”), they added an extra verse of “Feed Ing Tube” to the already catchy song. We vowed to redouble our efforts at feeding my face and we got the hell outta Dodge for the next four and a half months.

By my next appointment, we at Team ALS Boy felt quite confident that I had not only maintained but actually gained weight. Our optimism eroded the instant we saw the readout on the scale: 152.3. I was down another ten pounds. Despite my protests, there was no recount, no reweigh. I made my concession speech and agreed to get a feeding tube installed at my earliest convenience. They were happy with my decision to go through with the procedure, of course, but I knew in my rather protruding gut that theirs was an ill-gotten victory.

Fast forward five days later to my thrice yearly breathing test at Kaiser. As per usual, protocol dictated a trip to the scale prior to the scheduled examination. Because I was having an impossible time climbing up on the scale under my own power, an alternative method of weight measurement was decided upon. Here are the results:

ALS Boy + power chair ………. 535 lbs

—— MINUS ——

power chair by itself ………….. 372 lbs

—— EQUALS ——

ALS Boy & gut by themselves .. 163 lbs

Either I gained ten pounds in 120 hours or I should have pushed harder for a recount in the clinic that day. Now that I have a modicum of vindication weight-wise, I still want to get the feeding tube. I have big plans for that thing; just don’t tell Fehmeen.

Baby Elephant Walk

Emma @ 19 months, Halloween 2009

.

In Words:

Transcript of an actual conversation between mother and daughter.

Fehmeen: What do we say when we go up to someone’s door on Halloween?

Emma: Knock, knock.

Fehmeen: That’s right, but what do we say when they answer the door?

Emma: Hi!

Fehmeen: Ha, ha, good. What do you say after that?

Emma: Trick or treat!

.

In Pictures:

Living at the Movies Volume 2 Issue 3

Before I dive in to my latest batch of movie reviews, I would like to ask for some help from you, my esteemed readership. With the sudden closure of our local video library, I am planning to reactivate my old Netflix account. I want your help in setting up my queue. Recommend movies that are:

• your current favorites
• your all-time favorites
• your least favorite
• truly awful
• completely out of left field (in a good way)

Please don’t feel obligated to complete the entire bulleted list. Just give me whatever comes to mind. I thank you in advance for your thoughtful selections. Now, on to the reviews.

Zombieland - What do you get when you combine a pitch-perfect cast with a visually stunning opening credits sequence with an unexpected cameo by actor B.M. and more creative zombie kills than should be legal?  You get the feel-good film of the Fall movie season. Grade: A-

My Life in Ruins – Since Fehmeen wears the remote in our family (and subsequently chose this movie for us to watch), maybe she could review it and grade it in the comments section. Thanks, Babe.

The Jerk – Do yourself a favor and watch this movie again for the first time. It’s worth it for the phone book scene alone. Grade: B+

Educating Emma

Early on during dinner at the Cantina restaurant last night, I asked Fehmeen to teach Emma how to say “trick or treat” in preparation for Halloween this coming Saturday. Last year, due to both her age (7 months) and her lack of walking skills (again, 7 months), Emma was relegated to the role of Halloween spectator. But this year, we have BIG plans to roam around the neighborhood begging for candy from strangers.

Now, the Bug is an extremely quick study. When she wants to, she can repeat almost any word or short phrase she hears. However, last night the little Miss had a major distraction in the form of an overflowing bowl of tortilla chips in front of her face. Boong-yah, anyone?

In order to get Emma to say the phrase that pays, Fehmeen had to bribe her with chips. Once she had a fistful of chips, the trick or treats flowed like candy corn flavored wine. Until the ride home when Fehmeen asked her to say to trick or treat again.

Emma’s one word response: “Chips.”

A Pea-in-a-Pod, Halloween 08

What will she be this year?

B.Y.O.D.C.

I recently paid a visit to Ross O, my dentist, for my quarterly teeth cleaning and gum bleeding. As I maneuvered my new powerchair down the office hallway, Martha, the hygienist, suggested that rather than struggle with a transfer into the dentist’s chair, I could simply back my chair into her room and press the recline button so she could get to work on reinvigorating my million dollar smile.

Once the appointment was done, it was a breeze rolling out of there (no need to reverse). Unfortunately for his next patient, Ross O joined us outside to watch me drop the hammer in my chair on the open road and to behold the spectacle of the Big Red Van.

ALS Boy 101

Whether you are a new arrival to my little online soiree or you’ve been here so long you have your own guestroom, I invite you to enjoy a few of my favorite posts from the past twelve months.

1 illegally parked car + 1 dirty diaper = Another Reason Why I Love My Wife

Incontinence at home and abroad: The Statue of Molly Malone

I knew nothing of the NPR show prior to writing This I Believe

Read the piece that inspired the ALS Boy documentary: Oh, The Places I Go

We’re Bringing Sexy Back

I have always considered myself to be more than a little bit nerdy when it comes to the things in life that I enjoy. For example, I like to read comic books, watch science fiction movies, and listen to Barry Manilow. I love solving math problems, analyzing sports statistics, and making inferences about data when it’s displayed as a line or a bar graph.

Believe it or not, life can get pretty lonely down here on Geek Street.

But then, every so often, somebody like Carla Zilbersmith will come along and invite me to be a part of something so mind-blowingly cool and artistically momentous that I am able to temporarily loosen the shackles of my outward nerdiness in order to unleash the sexy beast buried deep within my rapidly deteriorating body on an unsuspecting world.

Wait a second. He plans to unleash what? Where? Is that legal?

Like me, Carla has ALS. She also steadfastly refuses to fade away. Just like me. When she has something to say, disease be damned, she is going to say it. Loudly. And with feeling.

Which is exactly why I agreed to participate in her latest creative endeavor.

Here’s the dealio: Photograph a dozen ALS patients with their durable medical equipment — wheelchairs, canes, ventilators — in sexy and provocative poses, add 365 days subdivided into sections no longer than 31 days each (once a geek, always a geek), and call it a calendar. Mix in a ready-for-sale date of Thanksgiving and you have the makings of the can’t-miss gift of this holiday season. Details to follow as the date approaches.

For those of you who can’t wait, the Italian-American Man-Servant (dear ol’ Dad) snapped a few behind the scenes pictures of my involvement in the project.

I'm ready for my close-up, Ms Zilbersmith.

Carla directs the action from her powerchair.

Not having any fun.

Bored to death.

Okay, okay. This ain't so bad.

To read more about Carla, click on her kick-ass blog, Carlamuses .

Three Cheers for Team Steamy

I will take with me the following memories of the 2009 East Bay Walk to Defeat ALS at the Berkeley Marina this past Sunday:

• The frigid wind-chilled air blowing off of the bay wasn’t nearly enough of a deterrent to prevent us from completing our appointed rounds once around the track.
• Too bad the course was supposed to be twice around the track.
• In our defense, we did have two babies and a shivering cripple to look after.
• Oh yeah, we almost got lapped, too.
• Did I mention the babies? And me, the shiv crip?
• Speaking of the baby, Emma saw her first seagull. So what if it happened to be feasting on the innards of a gutted fish in the parking lot. “Birda, birda.”
• And speaking of me, I was recognized by a regional director of the ALSA organization. It was my first ever ALS Boy shout out. Awesome.
• Even though our time together at the walk was short, it was definitely sweet. Thank you to Captain Steamy, Donna, Connor, Beusch, and the absent Hairy Matt Berry from Fehmeen, Emma, and me.
• And Andy, sorry about that fantasy football beatdown.

Calling All Fashionistas

Hello everyone! I am handing over the reins to today’s post to my sister-in-law Farah. She is in the process of launching an exciting business venture and she asked me to ask you for help. If you or anyone you know would like to get involved, please contact Farah directly at 619-890-6662 or farahk83@gmail.com.

My name is ALS Boy and I approve this message.

***********************************************

MY CHIC CLOSET – Online Consignment

New, Used and Always Chic…

My Request:

I am starting an online consignment business.  I want to re-sell new and gently used chic clothing, shoes, handbags and accessories — high-end/designer/fashionable/trendy labels and items are the focus!  Since I am just getting this off the ground, I will need a beginning inventory.  This will be pure donation, as I have not generated a profit yet and will not be able to pay anyone on consignment.  My hope is that my plea for fabulous clothing will tug at your heart strings!   There’s also a twist– any items I do not re-sell online or have not been sold after 90 days will be donated to a different women’s charity every month!  Charitable & Chic is my motto …

Please contact me at 619-890-6662 or farahk83@gmail.com for more information.

Thank you for your help!

Farah Khan

*******************************************