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Archive for September, 2008

Fehmeen and I went out clubbing last night. On a school night, even. We were so exhausted after an evening of debauchery that they had to wheel me out of there. There was slightly inappropriate dancing and excessive drinking and thunderous live music pumping all night long. And if you think that we were a part of any of that then you definitely don’t know us very well.

We had tried to see Keith Anderson a few years ago and failed miserably. For all of you who just said, “Who?”, Keith Anderson is a country music singer/songwriter who used to write hit songs for other artists and now has a solo career. I know you probably stopped paying attention at the part where I wrote country music but if you are a fan of well-written, catchy, hooky, fun and creative music then do yourself a favor and check him out and maybe you’ll end of digging him as much as we do.

The last time we tried to catch him, we arrived at Club Rodeo, tickets in hand, to an utterly empty and deserted parking lot and nightclub. We were clued in by another pair of uninformed losers that Keith had canceled this date on his tour due to a sore throat. Apparently the promoters had inundated the airwaves of the local country radio station with this info but since we don’t have that particular station on our car presets, we were S.O.L.

So it was with mixed emotions that we arrived at a jam-packed, coned-off so as to restrict access to Club Rodeo parking lot last night. Happy because the show was obviously on this time around and annoyed because they were absolutely zero handicapped parking spaces in the near vicinity of the building. We ended up parking in front of a warehouse on a dark street a few blocks away. I utilized the off-road feature of my wheelchair and we made our bumpy and unevenly-surfaced way to the front door.

Once inside, we now had to jockey for a seat. (Not really for me because I provide my own accomodations but for Fehmeen). We found a spot at a table next to these radio exec type dudes who didn’t say word one to us all night. Perhaps it was because we just sat ourselves down at their empty table while they were trying their hand at line dancing and they didn’t feel like throwing down with a Blue Placard Warrior and his hottie. Or maybe they were just being nice.

As we settled in with our drinks for the evening, a glass of coke for me and a tiny little adult beverage made from grapes for my partner in crime, we couldn’t help but notice that the floor show had begun. Parading around before our eyes in a counter-clockwise circular-ish trajectory were approximately four dozen of the Silicon Valley’s most enthusiastic, and not to mention rather interestingly dressed, group of line dancers. To their credit, they did a better job with the dancing than with the dressing because most of the fashions on display were in vogue circa 1995, with the notable exception of a few misguided attempts at pulling off the skinny jean look. (Before you say, “Oh yeah, what were you wearing?”, I will admit right here and now that I wore the same outfit to the show that I wore to school that same day which consisted of a pair of jeans and a button down shirt purchased from…Costco. Deal with that, judgers of me judging you). 🙂

Around 930 pm, scheduled show time, a dj, I mean on-air personality, from the local country station graced the stage with his Cowboys-hatted presence. And when I say Cowboys hat, I’m not referring to a chapeau of the ten-gallon variety but rather of the Dallas/Tony Romo/Terrel Owens vintage. Front runner or fan from back in the day, I know not, but an interesting choice of dome cover in Niner country. Apparently, it was his designated duty to scream out the message, even though he had a microphone in his hand, to the increasingly socially lubricated masses that it was almost time to rock and that we should check out these upcoming Club Rodeo shows, of which he told us about for the next few moments.

Fifteen more minutes passed before the headliner and his band hit the stage. In addition to playing tunes from both of his albums, Keith also performed a couple of songs that he had written and had become hits for other artists. To me, the coolest part of the show happened when Keith introduced the band to the audience. As he mentioned each band members name, they played a verse and a chorus of a cover song that showcased each guy’s talent. I did not expect to hear Kiss’ Detroit Rock City, Don Henley’s Boys of Summer, or an unremembered titled (by me) tune by ZZ Top at a country bar.

In addition to the music being played, we were afforded the opportunity to bear witness to the drunken human drama unfolding on the dance floor in front of us. In addition to the usual sloppy and staggering slow-dance make out sessions, there was this white-haired older gentleman with a Moe from the Three Stooges haircut who was enthusiastically dancing with every pretty girl in the joint. At one point he even got so excited that he grabbed a bunch of balloons that were at the edge of the dance floor and headbutted them. Good times, good times.

By around 1100 pm, Fehmeen and I were ready to get out of Dodge. We bid a fond adieu to Club Rodeo as we rolled out of there. We arrived home around 1115 pm, checked on the Bug, and promptly crashed for the night. As I drifted off to sleep, I thought about the good time I had tonight and how great it felt to be out in the world doing normal people things again. I definitely have to do this again.

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I had a pretty rough Sunday a few weeks ago. Think back a few weekends to Sunday, September 7, at approximately 1030 am. Now, imagine me sitting on the couch, in front of the tv, with a Dell laptop, well, on my lap. I toggled between the two open windows on my desktop screen, yahoo and cbssportsline, as I intently monitored my teams’ progress. It was then that I noticed that there was something wrong with my starting quarterback. The score of the game he was involved in was increasing but his stats remained at 76 yards passing. What the heck was going on?

Unless you are a sports fan like me, you are probably asking yourself the same question, what the heck is going on, but in your case, that question is most likely in regards to the setting and content of the previous paragraph. Not only am I ALS Boy, I am also a fantasy football fanatic from late August until late December every year. Yes, I buy the magazines prior to my league’s draft. Yes, I scour the web looking for information on potential free agents. Yes, and I even wake up early Sunday mornings to watch the pre-game shows and make any last minute changes to my starting lineups. Okay, I’ll admit it to the entire blogosphere: my name is Jason and I am a fantasy football geek. Now, back to the topic at hand.

Allow me to pose the question from earlier again: what the heck is going on? I’ll wait a second or two for you to reread that first paragraph. I’ll give you one guess as to who was the starting quarterback on my fantasy team this year? Yep, you figured it out; Tom Brady. In hindsight, I am so happy that I spent my first round draft pick, the fifth pick overall, on a guy that got hurt for the entire season in the first quarter of the first game. (Can’t you just taste the sarcasm?). For the fantasy football uninitiated, basically what happened to me was the equivalent of buying a really expensive car and having it break down about a mile into a cross country trip. And before you can suggest that I just return the car or call AAA or something like that, things don’t work that way on gameday in fantasy football. You pick ’em, you’re stuck with ’em. (At least until you can replace ’em on your roster as a midweek, free agent pickup).

Basically, the second Tom Brady got hurt, my season went up in flames. I was toast. Put a fork in me, I was done. The fat lady had begun to sing the first verse of Don McLean’s American Pie and we all know how long that song is. My fantasy life was over before it had begun. At least I had my health. (ha, ha; even more sarcasm)

Believe it or not, I managed to make it through the rest of the day; for me, ten solid hours professional football can help smooth out the roughest of roads. Everything was fine until around 900 pm that night when I was standing by the kitchen table and I attempted to turn 90 degrees to the right and I lost my balance and fell face first on the tile entryway. My ribcage and right arm took the physical brunt of the blow but it was my shattered confidence that took the biggest hit that evening. I had fallen a few times before but this one was a bit different because not only did I hurt myself (bruised ribs) , this spill came suddenly and without warning. Previous falls had happened in stages, several stumbles and missteps had preceded the inevitable boy meets ground, and I was at least able to mentally prepare myself for the pain. The difference this time was that it all happened so fast that before I could figure out what the hell was going on, I was desperately trying to pick myself up from the cold, hard ground.

Because it happened so quickly, I began to question and over-think every single move I now made. The physical pain I felt on the right side of my ribcage was a constant reminder of the mental trap I had set for myself; I was now in my head about everything. It seemed like my feet were dragging more, my arm strength was waning, and my balance was even more tenuous than I had previously experienced before. I even had a mental breakdown in the shower when my legs locked up and I couldn’t move. Even getting dressed became something I began to dread only for the length of time it took and the amount of energy it sapped from me.

The things that I had been able to do on a daily basis, items on my personal mental checklist, tasks that I clung on to like a life preserver, were quickly slipping away from me at seemingly lightning speed almost overnight. In my heart I knew that there was no way that the progression could move this fast but in my head I felt like I had begun the downward spiral to complete and total dependency; the absolute antithesis of how I had previously defined my life.

In times of crisis, I tend to circle the proverbial wagons, buckle down and try harder to accomplish the goals that are thus eluding me. I attempted the old tried and true problem solving blueprint for a few days to disastrous results; not a single strategy I employed seemed to do the trick. Trying harder equated to failing harder. Getting pissed off and screaming didn’t help either. (My muscles are too spastic and my voice too non-functional to effectively throw a proper tantrum). I was turning into someone I didn’t recognize; a bitter and angry worry-wart who was annoyed at the world. To re-reiterate an already belabored point: what the heck was going on? And what the hell was I going to do about it?

I gave up. Actually, I gave in. To all the offers for help and assistance from my closest family members and friends. Rather than struggle mightily through some inconsequential and mundane task because of my ego and pride, I simply decided to take what had been offered to me for weeks and months now. Once I accepted help getting dressed and tying my shoes, once I allowed myself to use my motorized wheelchair to take me longer distances, once I stopped being so damn stubborn about the little things, I began to enjoy being me again. No longer was I exhausted after showering and getting dressed every day. My old sense of humor returned immediately as well. I had to give a little to get a little. And what I got, far outweighs what I gave up.

So, what did I give up after Tom Brady got hurt in order to improve my team? Well, after losing my first game, I dropped Brady from Tomato Face (my team is named after our infamous Emma picture) like a bad habit and picked up his replacement Matt Cassell who stunk up the joint in my week two loss. Rather than be stubborn and bull-headed about something that wasn’t working, I picked up and started Philip Rivers, who was instrumental in my week three victory. In fantasy (football) as in real life, I was feeling really good about my chances again because I took a chance and tried something different and that has made all the difference in my world.

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My Daughter Hates Me

My daughter hates me or so I thought for the first few months of her life. Whenever I would hold her in my arms or even look at her and catch her gaze, she would scream and cry with such voracity and fierceness that I wondered if my neighbors would call CPS on me. More than once I found myself on the verge of tears at my inability to form a bond with my baby. I took numerous solitary walks around my condo in order to calm my increasingly fraying nerves. I didn’t feel like a father at all; what was I doing wrong?

My ALS symptoms began manifesting themselves around September 2007 when Fehmeen was about three months pregnant. Initially, slowness of speech was the only outwardly visible sign of the disease but when the baby was born in April, I was fatiguing more easily, walking with more difficulty, having a harder time with my hands, and my speech was rapidly heading towards unintelligible. I remember bringing Emma home from the hospital and being ready, willing and able to assist Fehmeen in all the parenting duties except in my case, the ready and willing were ready and willing but the able portion of the saying was, unfortunately, not able. The progressive effects of ALS, along with about three sleepless days and nights in the hospital, had taken it’s toll on my body.

I vividly remember carrying Emma one day soon after, she was swaddled and wrapped like a burrito at the time, across the living room towards our couch and I accidentally tripped on something on the floor. Thankfully, I recovered my balance and I did not fall nor drop the baby but I was forever scarred and scared by that one event. I became nervous and skittish around Emma and I began to develop a reluctance to carry her or even hold her based upon my lack of confidence in my diminishing physical strength and loss of balance.

At the time, I was also logging some major hours both at work and at home doing classroom-related work such as creating algebra lessons, correcting homework, grading tests, and preparing myself to prepare my students for the much ballyhooed and anticipated Algebra 1 Star Test in mid-May. As the calendar changed from April to May, I found that my work rate began to slow down and my ability to write with a pencil or pen started to diminish as well. Basically, things I did in the past with relative ease now took me longer and were more difficult for me to do. And the longer I busied myself with work, the less time I spent with my new baby. I was no more than a clumsy and intimidated stranger to Emma, and based upon my actions and absent father status, who could blame her for her insightful perception of reality.

And then came summer vacation.

Of the many fringe benefits of being a teacher, perhaps the greatest one is summer vacation. In my case, two months and change of getting paid to do, well, nothing, was the deciding factor for me in taking the plunge to earn my credential and become a teacher. And this summer break was not only essential for my health but it also was crucial for me to maintain my sanity and to strengthen my relationship with my baby.

Instead of leaving the house for upwards of ten hours each day to drive to work, teach, prepare for the next day, and drive home, I spent every second of the next two plus months by my daughter’s side. I was there when she awoke every morning (and after every one of her thrice daily naps). I was there during bath time every evening. I was there standing next to the changing table as Fehmeen changed her diaper (I tried a few times but my hands move to slowly and unsteadily for a kicking and wiggling infant). I was there for feedings and for playtime on the mat. When she was fussy, I would strum the guitar for her or even play the piano for her. When struggled to go to sleep, I would hold her in my arms as I sat on the rocking chair and we would listen to James Carrington, Amos Lee or early Tom Waits on cd as she drifted off to sleep. I finally felt like a father.

My daughter no longer hates me. Our relationship began to blossom about three days into summer vacation. Basically, all I had to do was to be there for her. Although physically I am unable to perform and participate in some parental duties, I have found alternative ways to both bond with and care for my beautiful child. Emma and I are now as thick as thieves. We watch football and baseball on tv together, we check out Abba videos on youtube, and we (quite literally) speak the same language to each other.

I love my daughter beyond where words can express. And I think she thinks I’m pretty cool now, too. Take a look at the She Loves Me and She Loves Me Not photos below.

She Loves Me and She Loves Me Not

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I’m not afraid to admit that:

I have thoroughly enjoyed watching a daily episode of Gilmore Girls on my dvr every day for months now.

I visit a comic shop every single Wednesday without fail (except those weeks that have a Monday holiday during which the Wednesday becomes Thursday) to pick up my latest assortment of comic books on my pull/subscription/must-have list.

I subscribe to the notion that every female on earth has been hardwired before birth to have the ability to sing the lyrics of every Abba song ever written. I am currently training my 5 month old daughter Emma by exposing her to Abba videos each weekend on youtube.

I prefer the taste of soda to beer.

I would be at a loss to name or even recognize a Coldplay or Radiohead song.

I used to watch the WWE religiously every Monday and Thursday night as recently as 2003.

I find farts funny. Come on, admit it, you do, too.

When Fehmeen and I went to the movies last December, we couldn’t decide on a movie to see together so we went our separate ways. She saw This Christmas while I opted for Enchanted. Needless to say, I was the only adult single male in attendance. I like those kinds of movies.

I discovered that the months of July through November are my months. Take the first letter of each month and tell me what that spells. I’ll wait.

Cool, huh?

I spent about six months of my life in my mid-twenties attending classes at the Berkeley Psychic Institute. And, no, I can’t read your mind.

And finally, I’m not afraid to admit that although I am supposed to be really sick right now, I have never felt better in my life. I am finally starting to figure things out; it sucks that it took a fatal disease to steer me in the right direction .

Thanks for reading and I hope you have a good weekend.

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I’m sure that if I wanted to I could stretch this list to, say, infinity, but that would take way too long for you to read and even longer for me to write so for the sake of all involved I will condense my vitriol to a relatively short list of ten things that really annoy me about having ALS. I also wish to issue the following disclaimer: the complaints I have about this disease and how it is currently affecting me are extremely time sensitive. Basically, the things that are bugging me right now most likely won’t bother me six months from now based on what I’ve read about and what I’ve personally experienced already with the progressive nature of Lou Gehrig’s disease.

A’ight. Drum roll, please.

I present to you the top ten annoying things about having ALS.

10) Stairs and curbs. Few things these days are as intimidating to me as a flight of stairs. All I can say is thank God for handrails. Going up stairs is not as problematic for me but going down, man, make sure to pass me by before I begin my descent unless you’ve got some time to kill. Even a curb presents a considerable challenge for my diminished sense of balance. I carry a cane with me everywhere I go so it can provide a tiny sense of stability when I encounter the inevitable curb.

9) Pants pockets. If I am ever in a situation, God forbid, where someone says, “Empty your pockets and do it quickly,” well then, I sincerely hope that that someone has read this list and is able to recall this item because if there was an Olympic event in pocket emptying then I would finish dead last. It has become so difficult to fish my keys out of my right front pocket (due to right hand weakness) that I occasionally have to ask Fehmeen (my wife) to get them for me, after which she threatens to buy me a pink fanny pack. On a more positive and fashion forward note, I now proudly rock a wallet on a chain; function over form for sure.

8) Having to plan for everything. No exaggeration here; when I say everything, I do mean everything. From having my wallet out when I am in line in the store to meticulously contemplating each and every step I take, I feel like an ALS boy scout living by the motto, “be prepared.”

7) Multitasking. Three words apply to this entry: forget about it. And when I say multitasking, I don’t mean driving in a car drinking a latte while illegally violating California’s new hands free law. No, the kind of multitasking I am referring to is of the more basic variety such as walking and talking, moving across a room with a glass of juice in my hand, lifting a car key to the ignition and twisting it, and on and on. I guess what I am trying to get at is that it’s literally one thing at a time for me from now on.

6) Ordering a sandwich at a deli. Take a moment to visualize from beginning to end what you do when you walk into your favorite deli to order your go to sandwich. I used to do that too. Here’s what I do now. This little system was devised after about a half dozen frustrating attempts to get a turkey on sliced sourdough bread with mustard, mayo, lettuce and pickles by speaking it to the sandwich maker. Because my speech is largely inaudible and very un-understandable, I now choose to type in my order into my Palm PDA and hand it over to the person when they say, “May I help you?” As they make my sandwich I have to do item number nine on my list and remove my wallet from my pocket first, remove my debit card from my wallet next, and then prepare myself to sign the slip. After the transaction is done, I do the whole thing in reverse and grab the bag and make my way out the door. Trust me, you do not want to know about the getting the sandwich home and preparing to eat it process. That’s another item on a list for another time.

5) Inappropriate laughing and crying. Believe it or not, this is actually an honest to goodness symptom for those of us lucky enough to have bulbar onset ALS, so much so that I am currently participating in a clinical drug trial at UCSF. The long and short of this particular symptom is that there are times when I have absolutely no control over my ability to stop laughing and/or crying. For example, a few months ago when Emma was a newborn, I was trying to make myself useful by attempting to help Fehmeen to calm Emma down and I could not stop giggling. That did not help the situation at all and I was promptly asked to leave. (I am lucky that both of my ladies are so forgiving and understanding). The crying is just as annoying as well especially when I find myself tearing up and sobbing during a Lifetime movie. Please don’t judge me too harshly, okay?

4) Out of control sneezing. If it is possible to hate and detest a bodily function any more than I despise sneezing these days, I would gladly empty my nearly impossible to get to wallet for you. I have always been a multiple sneezer (not just one sneeze at a time, no, no, at least three to five) but now that I have meager control of my mouth and tongue sneezing has become extremely painful and majorly messy. My sneezes have become so fierce and violent I now have to anchor myself to a solid object and grab as many tissues and napkins as I can. The sheer volume of snot (sorry) that comes out of my nose during these episodes is downright faucet-like. I’m not even going to mention the snot bubbles (can you say golf ball?). If I plan ahead and set up my video camera, I guarantee you I would be the next youtube viral video star.

3) Buttons. Buttons are the bane of my existence. They have been created and given a place on this planet to mock me. No lie but I could probably spend a good ten minutes trying to button up my shirt each day. It has gotten so ridiculous that I now leave my shirts pre-buttoned so all I have to do is slip the shirt over my head and have Fehmeen button the top one for me. Needless to say I have gotten rid of my button fly 501 jeans.

2) Tying my shoes. Another exercise in patience, I could literally spend ten minutes per day per shoe. When we are running short of time I actively seek help with this activity but when I have the quality time to spend doing it, nothing beats the fun of trying to tie your shoes over and over and over again.

1) People that treat me like I am retarded. This one seriously bugs the crap out of me. I realize that I don’t get around that quickly anymore and that I sound different than anyone most people have ever heard in their day to day lives but that doesn’t mean you can bust out your Jump to Conclusions mat and play the let’s talk to this guy really, really slowly so he can understand what I am saying card. This has happened to me several times in the very recent past. The first time was at Safeway when I asked a worker there where the Kool Whip was and he told me aisle five and then offered to show me where that was. I declined his kind offer. By far the worst and most offensive episode happened when I went to a doctor’s office for a laryngoscopy, which is a cool procedure where they stick a camera through your nose and down your throat to check out your vocal cords. There were three doctors in the room with me that day and after the test was done, one of the doctors explained to me in a very, very slow and condescending fashion that even though I may get a device (a palatal lift) that may make my speech more understandable, he felt that I should be aware that due to the progressive nature of ALS that the solution is only temporary. Thanks for the four one one, jackass.

Before I sign off, I do want to say one more thing. Even though I may be complaining about the things that are currently annoying me, I want to make it abundantly clear that I want to continue to do all of these things for as long as possible because that means that I am maintaining some modified degree of independence. I have this mental checklist of tasks I can still do and I fully intend to keep that list at it’s current length.

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I have a cousin named Matt P^&*%. Well, technically, he’s not really my cousin, we were close family friends growing up, and throughout the years we just got into the habit of calling each other cousin. Our families would eat Mexican food at La Pinata in Burlingame and vacation together every summer in Lake Tahoe. Matt and I were witness to the Billy Mitchell Clown Alley Ketchup Incident in San Francisco and I was there when Matt inserted himself onto the San Bruno High School Social Scene’s A List by hosting the infamous Toga Party of 1986 at his parents’ house (which caused tens of thousands of dollars in property and structural damage).

For as long as I’ve known Matt, he has had the singular dream of someday owning his own casino. Since the day we met, the idea of being the next Bill Harrah, Steve Winn, or Donald Trump has always appealed to him. Along the still-continuing voyage to eventual gaming establishment proprietorship, he has worked at the Pacific Stock Exchange in San Francisco, he’s been an apartment manager in Las Vegas, and he has worked in the real estate business.

Although we haven’t kept in close, personal contact in recent years, my wife and I do receive a monthly newsletter from Matt. The interesting thing about this newsletter is that every month the items being sold or the services being promoted are completely different and absolutely unrelated and totally random. One month, it’s feng shui that’s being hocked and the next month, it’s all about refinancing your home loan. Despite being unique month after month, there is one phrase that appears on every single piece of correspondence and it is this: “We’re never too busy for your referral.” I realize that this quote is a company slogan much like, “I’m lovin’ it” or “Don’t let the smooth taste fool ya”, but it’s inclusion on the bottom of the twelve times per year missive never fails to elicit from me a chuckle. Every month I would look forward to receiving and reading the letter that concluded with the line, “We’re never too busy for your referral.” Ha, ha, ha. Giggle, giggle, snort. Hee, hee.

So, you can imagine my disappointment this month when his newsletter did not contain the words, “We’re never too busy for your referral.” I was so broken up about the situation that I initially refused to read the letter. That is until my wife excitedly brought the letter to me one and exclaimed, “You HAVE to read this!”

I responded with, “Why bother? There’s no referral line, what’s the point?”

And she said, “Just read it, okay?”

And so I did. And now you can, as well.

August 1, 2008

Dear Friend,

I hope this letter finds you and your loved ones in good spirits.

During my business day, I often have requests from my clients for referrals to professional trades and services – everything from painters to attorneys.

As part of my ongoing Client Appreciation Program, I will sometimes send you a letter endorsing a particularly good trade or service provider my clients and I have found to be of tremendous value.

One such referral is Matt P^&*% of M______ 2 L______. He has been my Loan Officer for the past 20 years and he is superb at what he does! That’s right, I do home loans as well as real estate. FHA, VA and conventional home loans.

If you, a friend, or family member need the help of a good loan officer, Matt P^&*% can be reached at:

Sincerely,

Matt P^&*%

Apparently, Matt’s not too busy for his own referral, either.

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