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Archive for January, 2009

Last Friday, Fehmeen and I attended a speaking engagement at Foothill College. The event, hosted by the philanthropic group Trust in Education, featured Khaled Hosseini, author of The Kite Runner and A Thousand Splendid Suns, in a discussion with Trust in Education founder, Budd MacKenzie. Their conversation centered around MacKenzie’s groups mission of “Bringing Education and Economic Development to Afghan Villages.” For more information on this amazing group, please visit their website.

While the dialog between the two men on stage was compelling and informative, it didn’t measure up to the intensity of the scene that played out between a handful of individuals during the hour prior to the event. That’s when the real drama went down. The following is a list of keywords and phrases to be on the lookout for as you read this story: handicapped parking, stairs, emergency telephone, one-way street, and a ride in a cop car. Oh yeah, there is also a brief appearance by Fehmeen’s sister, Farah, towards the end, as well (so maybe she’ll stop meowing at me to include her in my blog).

Fehmeen and I arrived at the community college campus approximately fifteen minutes before the pre-event reception for which we purchased tickets was about to begin. Since this was our first time visiting Foothill, we had no idea where we were headed. All we had was a name, Smithwick Theatre, to guide us. As luck would have it, the very first sign we encountered informed us that the theatre was thataway. So thataway we went.

A mere hundred yards later, we arrived at the Smithwick parking lot. Great, that was easy, except for the fact that the actual theatre was about a thousand feet away at the top of an uphill pedestrian pathway. There was no way in hell, short of attaching a six cylinder engine to my back, that my wheelchair was going to make it up that steep of a grade. Time for plan B.

Since we were still early, we decided to try driving on the road directly to the right of the path to see if it led to the theatre. It did, sort of. We ended up parking in the only blue handicapped space in the small lot at the rear, backstage entrance of the Smithwick. Whew, what a relief. Fehmeen exited the Honda to find the path inside for me and my chair but returned minutes later finding none. The rear entrance was on an inaccessible three foot platform and the front entrance (we assumed) to our right was atop a steep flight of about thirty stairs. Enact Plan C.

Before Fehmeen ascended the cement stairway (presumably) to the theatre, she noticed one of those campus emergency phones on a pole near our car. She lifted the phone from it’s cradle with the intent of getting some guidance on our rapidly escalating accessibility issue but when no one picked up on the other end of the line, she hung up and made her way towards the stairs while I waited in the car.

She returned five minutes later with a student volunteer in tow. As he hopped into the backseat of our CRV, Fehmeen explained to me that this kid knew the way to the promised land, the fabled front entrance to the Smithwick Theatre. He guided us to the right of the staircase and onto a two lane road which apparently circled the campus. About thirty seconds down the road, we spotted the theatre, up a hill, to the left, just past a busses-only road.

Rules be damned, Fehmeen drove on the bus path, up the hill and parked on a flat driveway about three hundred (level) feet from the theatre. She unloaded me, my chair, and the student and drove off back to our blue parking spot backstage. My instructions were to wait for her to return from parking the car.

I waited for fifteen minutes with no sign of my wife. Dozens of well dressed guests strode past me on their way to the pre-event reception but no Fehmeen. Just as I was about to get worried about her, she showed up with a wild look in her eyes. Before I could ask her what happened, she told me.

After she dropped me off, she drove the car back down the hill. When she got back to the main two lane road, she made a right hand turn. Almost immediately, she heard the sound of car horns honking. It seemed as if every car that approached her blasted her with their horn except for one car. That one car was a cop car and it pulled her over.

When informed by the police officer that she was driving the wrong way down a one way street, all Fehmeen could tell the cop was how not handicap accessible the campus was. The cop asked her if she was the one who had made the emergency call and she responded with a yes which led to the cop asking her if she had a problem which elicited the now classic response of “I’ve got a lot of problems” from Fehmeen.

Fehmeen then proceeded to tell the cop the story of me being diagnosed with ALS while she was pregnant with Emma and instead of getting a ticket, Fehmeen got to ride in the police car back to the theatre along with a flyer to park the car wherever she wanted without the risk of a parking ticket. I guess crime, at least a moving violation, does pay when you have an airtight alibi in the form of ALS Boy.

After the tear-free reunion, we managed to survive the reception without incident. It wasn’t until we entered the actual theatre to find our seats that we encountered the final obstacle on our quest for total accessibility. Halfway down every aisle in the Smithwick were two stairs. An alternate route to our assigned seats in the sixth row was needed asap.

Fehmeen located another student volunteer who told us about a ramp located just outside the side of the theatre. Farah, who had arrived with several other members of the Khan clan during the reception, held the door as I rolled my way down the ramp towards the area where our seats were located. Once we were all seated, the lights dimmed and the event began.

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25 Random Things About Me

I read a note on facebook the other day which was posted by my friend Clarece. It was a list of 25 random things about her. After I finished reading her list, I decided to compose one of my own. I initially published it on facebook but then I figured, hey, why not post it here on my blog as well.

So here is my list of 25 Random Things About Me.

25. I was one of those kids who got their head stuck between two wrought iron bars at the mall.

24. A classmate of mine, named Craig Mah, was so intrigued by a class discussion in Mr Dakes freshman English class about the double standard that exists in our society of how women can wear pants but men cannot wear dresses that the very next day he arrived late to class…in a dress. Too bad Mr Dake was absent that day.

23. I have seen The Rocky Horror Picture Show in the theater at least 35 times. “Michael Rennie was ill The Day the Earth Stood Still, but he told us where we stand…”

22. I once told an intolerably annoying and haplessly gullible coworker that my great great grandfather invented the comma. I informed her that before his incredible contribution to society at large, people didn’t know where to pause when they read.

21. I entered my first comic book shop in 1992 to pick up Superman #75, the Death of Superman, which I had heard publicized on the radio. I must have enjoyed it because I have returned to one comic shop or another each and every week to pick up new issues.

20. I learned my numbers 1 through 80 by the tender age of 3 because my family spent so much time in Harvey’s Casino, Lake Tahoe at the Carriage House diner and all I had in terms of entertainment were the blank Keno tickets (numbered 1 to 80) and those long black crayons.

19. I married Fehmeen three times in 2006. The civil ceremony at the Rotunda in City Hall in San Francisco was on June 20, the Islamic Nikah occurred on July 1, and the American wedding went down July 8.

18. I played the xylophone in marching band in high school.

17. I once won a radio contest where the prize was the opportunity to play catch on the field at Candlestick Park with my Dad before a Giants game. It almost didn’t happen, though, because when the station called to tell me that I had won, I hung up on them because they had pronounced my last name incorrectly. Once I surmised who had been calling me, it took me several apologetic phone calls and one long ass ride down to the radio station to pick up my prize.

16. In the months prior to the manifestation of my initial ALS symptoms, I was playing the best softball of my life. I was hitting the ball harder and farther than Barry Bonds circa 2001 and I was running faster than a third grader’s nose in December.

15. One summer during college, I worked as a Census Enumerator.

14. One of my most vivid childhood memories is from the time that I threw up in the eye doctor’s office. I will never forget the sight of him wadding up his bagged lunch nor will I forget the sound of that lunch hitting the trash can.

13. I have always had this crazy theory that everyone knows someone who was born on April Fool’s Day. For as long as I can remember, whenever I told somebody that my birthday was on April 1st, they would proceed to tell me that their Uncle Bob or their neighbor’s son’s girlfriend’s mother was born on that day, too.

12. I still own Roberto Clemente’s last baseball card (1973 Topps). The card is worth over $70 in mint condition. Not the one in my collection, though. I colored on mine when I was four. Apparently, I thought the Pirates would look cooler in green and purple uniforms.

11. I have 7 tattoos. Five on my ankles and two on my arms.

10. My first album was The Eagles’ Hotel California, my first cd was the soundtrack to West Side Story, and my first (legally) downloaded mp3 was Britney Spears’ Toxic.

9. My grade point average in high school was 4.13, in college at UC Davis it was 2.63, and at teacher school at the College of Notre Dame it was 4.0. It’s all about how you start and finish, right?

8. My favorite attraction at Disneyland is the Tiki Room.

7. For years, I paid two tolls whenever I crossed the Bay Bridge; one for me and one for whomever was behind me.

6. When I took driver’s ed, the day before we took our permit test, we were given a practice test. The next day my test was exactly the same as the day before. Two words: aced it.

5. There is a 13 year age difference between Fehmeen and myself. When I was going off to college, she was entering kindergarten.

4. I have long aspired to marry the first woman president. It would so cool to be the first first man.

3. For three years I taught a class called math puzzles and games. Over the course of a semester, I taught seventh and eighth graders how to play such games as Hearts, Texas Hold ‘Em, Blackjack, Spoons, and a whole lot more. Needless to say, it was a very popular class.

2. One year, my grandpa and I were the same age (18). He was born on February 29. That’s leap year and he only had a birthday once every four years.

1. As Fehmeen and I debated what to name our soon to be born daughter, I awoke one morning at 3 AM from a dream I had just had. I woke Fehmeen up immediately and told her that we should name our baby Emma. I explained to her that in my dream the letters in the name Emma represented the words Every Moment Matters. The Always part came a few days later, courtesy of my Aunt Nancy.

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Anatomy of a Rejection

When I initially sat down to compose my “This I Believe” entry about a month and a half ago, I had no idea that it would turn out the way it did. I originally intended to include only the bit about how the removal of my two rotten teeth resulted in the eradication of a major source of poison from my body but by the time I had finished writing the piece a few hours later, it had morphed into what it ended up being.

Judging by the number of hits the page has received and also by the host of complimentary comments posted by readers, a lot of people not only read, but enjoyed, the article. Two people in particular, Dan and Julie, even suggested that I submit the essay to thisibelieve.org . After nosing around the site for a few minutes, I realized that, as a concept and as an entity, This I Believe was a pretty big deal. Here was a place where everyday people could write about what they believed in with the possibility that some of the better essays could be read over the airwaves on npr.

I allowed myself a moment or two (or ten) to immerse myself in the calm, cool waters of the outside chance that my piece could be featured on the radio across the United States and Canada. In my mind I had already convinced myself that I was a shoe in, given my personal back story with the terminal disease and the new baby and everything. I felt like my writing was strong enough and my recent history was compelling enough to at least warrant some serious consideration from the essay evaluators.

In addition to all that jazz, I had a secret weapon in my arsenal as well. You see, at the time I wrote my blog entry and titled it, “This I Believe”, I had absolutely no idea that the radio readings on npr or that the essay archive website even existed, I swear on my life. As far as I was concerned, the fact that I had created something on my own that had matched the exact template of a concept as cool as the This I Believe project, it was my destiny to be chosen.

So I filled out the online form, reformatted my essay as a .txt file (per their instructions), and confidently submitted my work. I was told via a follow up email that their decision would be forthcoming in the next six to eight weeks so I promptly forgot about the whole matter.

Exactly six weeks later I received the email equivalent of the small college application response envelope that you receive when you don’t get in. It read as such:

Dear Jason Picetti:

Thank you for submitting an essay to This I Believe. Your essay has now completed our review process. Though your essay was not chosen for broadcast on NPR, the larger goal of our project is to open a community conversation about belief–one essay at a time. To that end, we have placed your essay in the This I Believe online database.

If you go to our website at www.thisibelieve.org, then click on “Advanced Essay Search,” fill in only your last name in the “Last Name” field. You can also find your essay by searching all essays from your city or state. You will notice that only your first name will be seen on the web page with your essay. We do not publish last names or other personal information on our website.

Please don’t consider this in any way a “rejection.” Our criteria for broadcast consider many factors beyond subjective notions of quality. We air only a fraction of one percent of those submitted, and we must balance our few selections across themes, perspectives, diversity of sources, and so on.

Though your essay has not been selected for NPR, we are working to find other venues to publish some of the many thousands of essays we have received, including newspapers, podcasts, and local public radio stations. Should we find a venue to print or broadcast your essay, one of our staff will be in touch with you.

We are honored by your having shared your most closely held convictions with us. Thank you, sincerely, for participating in our project.

— The staff of This I Believe

I share this information with you all not for the purpose of hoping to solicit a grassroots groundswell of support for my cause but rather to let you know that I value your readership and participation on my blogsite. I love reading your comments and perspectives whenever they come in. And although I may not have formally (or informally) responded to them in kind, I have carefully considered your words to me and I am flattered that you have chosen to take the time and effort to join in the discussion.

Thank you for your support.

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One of the cornerstones in my relationship with Fehmeen is our mutual love of eating in restaurants. To us, nothing is quite as satisfying as sitting down to a delectable meal prepared by and served by someone other than ourselves. Our near insatiable appetites for restaurant food reached an all-time high (or was it an all-time low) the times we would routinely follow up a grueling hour long abs class workout with an ordered meal from our favorite Mexican restaurant.

Needless to say, our gastronomically obsessive behavior has changed for the better in the past year; credit having a baby AND having a progressive disease that limits one’s mobility for that. While we eat at home with alarming (for us) frequency these days, we still enjoy grabbing the occasional bite to eat out somewhere.

In fact, such was the case a few weeks ago when Fehmeen and I went to dinner at three new (to us) restaurants over a four day span. It is my intention over the course of this posting to provide you with as much lowdown about these three culinary establishments as I can.

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Now, before I bid you bon appetit, it is essential at this juncture that I clue you in to the identity of the guy named Dave from the title. The mysterious Dave is none other than San Carlos real estate magnate and all around pinnacle of the community Dave Blewett. If you’re asking why you need to know that, it’ll come up later and you’ll be glad I told you, trust me. Bon apetit.

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Restaurant: The Van’s Restaurant on the Hill

Location: Belmont, CA on El Camino Real

Atmosphere: Judging by the style of dress and the median age of the customers on this particular evening, I had this joint pegged as an old school, high class restaurant with a spectacular view. The prices on the extensive menu further confirmed my assertions.

Who Was at Our Table: Rob, Melissa, Fehmeen, and me

What Was on my Plate for Dinner: Without hesitation, I ordered (and demolished) the three quarter pound prime rib dinner with mashed potatoes and a side of creamed corn. I even saved a little room for a scoop of vanilla ice cream for dessert. Apparently having ALS hasn’t affected my appetite.

Comfortable Spot for Emma to Sleep: Not applicable (Emma was home with Grandma)

Number of Coinci-Daves: Up to 200 big ones. As a reward for choosing him as our realtor, Dave Blewett graciously bestowed upon us a gift certificate to Van’s worth up to $200 (fresh squeezed orange juice not included). See, I told you he was a good guy.

Overall Dining Experience: a solid B

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Restaurant: Roti Indian Bistro

Location: San Francisco, CA on West Portal

Atmosphere: Even though it was an early Sunday evening, there was not an empty table to be found in the somewhat small but extremely hip/trendy place to be. Tastefully appointed and impeccably decorated, this happening West Portal hot spot is an establishment in which to see and be seen (at least in the Sunset).

Who Was at Our Table(s): Actually, it would be simpler to list who wasn’t at our two tables but here goes. Alia, Iqbal, Maheen, Papa, Brenda, Rustam, Fehmeen, Emma, and me.

What Was on My Plate for Dinner: Being the sole white boy in an ethnic family, Indian food is a relatively new experience for me so if I skimp on the details or outright forget things, I apologize in advance. I recall eating naan bread with goat cheese, spicy ass chicken, beef and lamb kabobs, rice, and some of the most delicious Mitchell’s ice cream I’ve ever had.

Comfortable Spot for Emma to Sleep: Despite the loud and crowded nature of the restaurant, Emma was so exhausted and tired that Fehmeen and Maheen placed The Bug right on the cushioned bench between them and let her sleep for about forty minutes.

Number of Coinci-Daves: None but we did have to explain Dave’s Van’s payment situation more than once to Alia. In her defense, it was noisy in there and Alia’s ankle was a bit sore. Haaaaaaaaaaaa!

Overall Dining Experience: A——

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Restaurant: Town

Location: San Carlos, CA on Laurel Ave

Atmosphere: Absolutely jam-packed on a Monday night at 8 pm, Town is the epitome of nouveau swanky steak/chop houses. Classy to the nth degree, this place is the shit. Pardon my French.

Who Was at Our Table: Adam (birthday boy), Sarah, Fehmeen, and me

What Was on My Plate for Dinner: New York steak, garlic mashed potatoes, creamed corn, and a few spoonfuls of a hot fudge sundae. What can I say, I like what I like.

Comfortable Spot for Emma to Sleep: At home with Grandma, again.

Number of Coinci-Daves: As we were being seated in our booth, I happened to glance at two small plaques located at the base of the table. They read something to the effect of: Dave Blewett donated some cash for some cause and here’s the plaque stating such. Again, I told you he was a good guy.

Overall Dining Experience: A-

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Hello everyone and welcome to a long overdue installment of R and R Revisited. The past few weeks have been a bit more mentally and physically challenging for me than they have been in the recent past and one of the unfortunate by-products of rougher than expected times is a drop in the timeliness and productivity of my writing. The good news is that I have been feeling a whole lot better (because I’ve resumed seeing most of my people since the shitstorm hit) and the end result of that is more writing. Speaking of which…enjoy.

I Swear It’s Not Nepotism. Remember how in my last post entitled “Nine Thousand”, I offered a prize to whoever could figure out the meaning behind the title? Well, we have a winner! Fehmeen explained her prize-winning idea in the comments section as such: “I figured it out……There are nine pictures, which explains the nine part. Then, the thousand refers to the common saying, “A picture is worth a thousand words.” Hence, nine thousand! What do I get?????????????????????” Since my response of, ‘You get me,’ was met with an icy glare and her reaction to my offer of breakfast at the restaurant called Stacks’ was the monotone answer, ‘Alone?’, it is safe to assume that we are still in negotiations on the mutually agreed upon prize. Thank you to everyone who participated and congratulations to my wife (who was obviously joking, right, babe?)

The Second Smartest Guy in the Family. Congratulations to my cousin (and ALS Boy blog commenter) Bryan on his successful and lucrative appearance on the television gameshow Who Wants to be a Millionaire. I guess all those times he and I took on the rest of the family in Trivial Pursuit really paid off.

Oh We Get Letters. The following email is from the still-anonymous, microphone wearing, flatulent subject of the Telling Tales Out of School story: “OMG, did that happen to you too? Or is that my story come back to me?” Classic in every sense of the word.

Ya Win Some and Ya Lose Some. My fantasy football seasons are over and the results couldn’t be any more mixed. In my free Yahoo league, I was crowned the champion. Yay for me. Unfortunately, I didn’t even make the playoffs in my $200 per person entry fee CBS Sportsline league. Boo for me. Will my not so silent partner let me forget this fact? Most likely not. Oh well, there’s always next year.

Cutting the Mustard. Last week I managed to sneak in the new Kings of Leon cd into the nearly impenetrable music queue of the family Honda CRV six cd player. (It was no easy task usurping such current faves as Britney, Akon, and Jason Mraz). I knew the disc was good but when Fehmeen expressed an active interest in it, I knew it was money. Check it out yourself, you won’t be disappointed.

Statute of Limitations. Is there a statute of limitations on sporting an Obama bumper sticker on your car nearly two months after the election? I mean, I voted for him, too, but there’s no need to remind everyone on the road that you did as well. It smacks of poor sportsmanship to me.

Just Let It Go. At what age do earrings on men become a fashion faux pas? When do they go from cool to tool? I’m thinking earlier than later.

Check It Out. On the days I’m not working on ALS Boy material, I am hard at work on my other blog called The Concert Project. Every show I’ve been to has a story and I intend to tell them all. Stop by if you can, I’ll leave your name on the guest list at the door.

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Nine Thousand

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* A mutually agreed upon prize will be awarded to the first person to correctly explain the meaning behind the title of today’s post.

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I have always been a guy who appreciates routine. I’m not as OCD as I used to be like the years when I parked my truck in the same space at work every day. Or when I took a picture down the same hallway every school day at the exact same time over a three year period. And let’s pretend that I didn’t buy a turkey sandwich on wheat bread every work day for at least five years from a place called the Sandwich Shop on Mission Street when I worked in San Francisco, okay? To say that I am intimately acquainted with the concept of routine would be an understatement of truly epic proportions.

Over the past year, however, my relationship with routine has changed somewhat considering the post-ALS diagnosis world in which I now reside. As I grow ever more dependent upon the assistance of others for my day to day needs, I have discovered the practicality in letting go of the more, say, idiosyncratic routines that I have long held onto.

In their stead, I have replaced them with more practical, treatment related routines. For example, I see Jen for acupuncture on Mondays, Christina for Qigong on Tuesdays and Fridays, Robin for PT on Wednesdays, and Sarah for nutrition and chiropractic on Saturdays. I even take my clinical trial drug twice a day, every day. It’s a routine that has worked for months on end and it afforded me the sense of an overall feeling of calm during these personally tumultuous times.

Everything was cool until the last two weeks when the metaphorical shit hit the fan.

My acupuncturist took a three week trip to Mexico. I haven’t had a chiro adjustment in two weeks because Sarah spent the holidays with her family in the midwest. I haven’t had PT in a fortnight either because Robin has been out of the office herself, and even if I went there to see someone else, the elevator was being repaired and that would’ve meant climbing the stairs (and I would still be there as I type). Christina suddenly moved back east to be with family. And I ran out of my clinical trial pills so not only have I noticed an up-tick in laughing and crying episodes but I am drooling more than a teething infant.

To make matters worse, over the past few weeks, I have noticed more difficulty in regards to walking, grabbing things with my fingers, and even getting a comfortable night’s sleep. In my head, I have assigned the blame of my diminishing capacities on these various interruptions in services and treatments. To top it off, I’ve been moodier and quicker to anger with family and friends and to be quite honest, I’ve been acting like a whiny little bitch. Oh woe is me.

Well, amidst my little pity party of the past two weeks, a wise and beautiful person (who also happens to be my wife) offered me up two simple words of advice: Buck up. At first I didn’t hear her; I believe that I mumbled something that could have been construed as ‘okay’ and went right about feeling sorry for myself.

It wasn’t until she took it upon herself to send out the necessary emails and make the requisite phone calls to get my spiraling out of control life back on track for me. Her unsolicited actions on my behalf spoke louder and more clearly about bucking up than any inspirational speech or motivational book ever could have.

I realize that there will be days ahead that are more difficult for me than others on this journey through life with ALS. I am so fortunate to have Fehmeen around to help me realize that it’s not the drugs and the treatments that are going to sustain me through the years and, hopefully, decades, but rather my spirit and conviction to fight through any adversity I encounter. Consider this realization my first blush at bucking up.

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