Feeds:
Posts
Comments

Archive for March, 2009

With Humble Gratitude. I would like to extend an unbelievably huge and heartfelt thank you to Renee Batti and Michelle Le for their incredible article about me in The Almanac (a newspaper in Menlo Park). Renee, your story, and the way in which you chose to tell it, compelled me to not only read, but literally digest, every word on those three pages. Michelle, your photographs are amazing not only in the sense of their composition but also for your ability to capture the subject at precisely the right time (case in point: the cover pictured at right). 2009_04_01cover4Thank you both for joining me and my family on this journey as full-fledged members of Team ALS Boy. You guys can roll with me and my entourage anytime you want. Props to Robin for making it happen. Read the article online here or grab a copy for yourself.

My New Obsession. I am hopelessly and haplessly addicted to the website pandora.com . For the uninitiated, pandora is internet radio. All you do is click on the Create a New Station button and then type in the name of any band or artist that you want to hear. Within seconds, you will be hearing a song by that band, followed by songs from other groups or artists within that genre. Leave it there for hours or create new stations at will, it’s all good (and did I mention free?). I am so hooked, I feel an intervention coming on soon.

Fist Bump. A pair of double fist bumps go out to my brother in law, Ameer, and future brother in law, Jason (aka J2). Whenever I hang with you two munhooses, I act like I’m in my twenties again (and that’s a good thing). Thanks for taking such good/bad care of me and helping me feel normal.

For Those About to Rock. Plans are being hatched to get yours truly, ALS Boy, out to a few shows in the coming weeks and months. First up, Clem Snide is appearing at the Bottom of the Hill in SF next week followed by two mega-concerts at Shoreline featuring a Jane’s Addiction/Nine Inch Nails double bill in May and Cruefest II with Motley Crue in July. If you see me coming at you in a blue power wheelchair with a cane in my hand, you best move out the way!!!

Wake Me When It’s Over. Even though it was cool to get my fix of New Zealand’s fourth biggest folk music duo, I can’t help but feel a little let down with the second season of Flight of the Conchords on HBO. Sure, I still love ya, Bret and Jemaine, but I wanted more memorable songs per episode. At least the ones that appeared on the show are available on iTunes (my current faves are “Sugalumps” and “Fashion is Danger”).

Sssshhh. Don’t tell Fehmeen but baseball season is starting up again next week (let’s just say she’s not the biggest fan of the game). How much trouble do you think I’d be in if amongst Emma’s first words were the phrases “home run”, “play ball” and “lousy Dodgers”? I would guess a lot of trouble. And speaking of guesses, I predict that the Giants win 84 games this year. And yes, I will make it to a game this season, okay, Mom?

Advertisements

Read Full Post »

What Makes a Memory

When they called our name to seat us, Fehmeen and Emma were shopping for a headband in the store next to the California Pizza Kitchen restaurant at the Hillsdale Mall. We had decided to head to the mall to pick up birthday outfits for me and The Bug before going home after our weekend getaway in Monterey and we wanted to grab a quick bite to eat. We didn’t want the traditional food court fare and since the wait for a table wasn’t too long, we opted for CPK.

Accoutrement bag tucked neatly away in the underbelly of the baby’s stroller, my two beautiful ladies rejoined me as we entered the bustling eatery. We traversed the maze of stationary tables and scurrying wait staff in order to find our cozy table for three hidden behind a wall around a corner. It wasn’t too long after we were seated and had placed our order did our food arrive.

At some point between my first and second slice of garlic chicken pizza, Fehmeen removed Emma from the wooden baby seat and sat her on her lap. I absently watched the two of them as Fehmeen alternated between feeding Emma small bites of my pizza and eating her own Miso salad. There they were, not a concern in the world, save for the taste of the food in their mouths; they looked so peaceful, so serene, so contented. As I stared at my family, I felt my love for them welling up inside me, looking for a place to escape. I told them in my clearest possible voice, “You and Emma make me so happy.”

It was in that all too brief moment in time that I realized you don’t need to go on any elaborate vacations or do anything extreme and out of character to make an everlasting memory. All you have to do is give yourself permission to experience these fleeting moments as they happen. I can accumulate all the digital photographs on all the hard drives the world over, but they will never approach the lush beauty and vivid clarity of the memory of Fehmeen and Emma from that night in the restaurant.

Read Full Post »

Breathing by the Numbers

As odd as it may sound, I truly believe that I have been (relatively) fortunate with my ALS symptoms so far. Sure, walking and talking have become a whole lot more challenging and tenuous for me, and activities such as eating, shaving, showering, getting dressed, and stair climbing have become de facto group activities but at least my breathing hasn’t been compromised. Or so I thought.

Every three months or so, I take a trip up to the ALS Clinic at UCSF for a half day visit with nearly a dozen different clinicians and caregivers who specialize in varying aspects of the symptom management of the disease. One of those specialists, a respiratory therapist, administers a test that measures one’s FVC (Forced Vital Capacity) or lung strength. The test, in which I empty the air from my lungs (after a deep inhale) into a mouthpiece attached to a machine, yielded a somewhat less than desirable result: a 68%. Compared to the 90% I blew the last time I took the test, the 68% marked a precipitous decline (although I suspect Fehmeen was not-so-secretly disappointed that I went from an A- to a D+).

All in attendance, from me and my entourage to the various clinicians, were quite non-plussed about the numbers. In fact, we were so confused by the results that we decided to take the test again. And again. And again. And with each time I took the test, my numbers became more dismal than the one before. In fact, the only thing more dismaying than the numbers themselves was the accelerated future the results portended: a nearer now than ever future of Bi-Pap breathing devices and surgically implanted PEG feeding tubes.

Considering that I haven’t experienced any shortness of breath episodes nor have I noticed any appreciable difference in my ability to breathe, I decided to take the FVC values under advisement. Why should I allow a name, or in this case, a number, dictate how I’m supposed to feel on a day by day or minute by minute basis? Besides, I had a secret weapon hidden away in my arsenal: I was going to have the test readministered, along with several additional ones, at the pulmonary labs at my local Kaiser Permanente offices.

Yesterday’s appointment marked the fourth occasion in the past year-plus that I had occupied the wooden swivel chair inside the rectangular glass booth built for one. As Kim, the technician, led me through the battery of tests, she shared with me the results as quickly as the computer would allow her. My score on the FVC test was a 78%, a 4% improvement over the 74% I blew on my first test there over a year ago.

Now, I share with you this information not to show up the fine folks at UCSF in any conceivable way, shape, or form. In fact, quite the contrary is true. This Friday, I will be meeting with a doctor to discuss my Bi-Pap options. I am also giving more than cursory contemplation to the idea of a PEG; both ideas and measures that will most likely figure into my future.

The main reason I bring up my two competing FVC results is because I felt overwhelmingly compelled to share my “good” news. It has been my personal experience in living with ALS these past twenty months that 99.99% of the news I have received in regards to the disease and it’s effect on me has been categorized as bad news so you’ll have to excuse me as I take a quick celebratory victory lap (in my wheelchair, of course). I won’t go as far as ordering the bumper sticker that reads, “I have ALS and my FVC is 78%”, because 78% is only a C+. Maybe when I get back into the A range…

Read Full Post »

Burning Questions

Hello everyone and welcome to another Adventures of ALS Boy posting. I really appreciate your continued support and readership. Thank you for stopping by to check us out.

For today’s entry, I thought that I would bare my soul a bit and pose to you, my dear and loyal readers, a few questions that have been on my mind these past twenty-four hours. Once asked, the impetus is on you to answer the questions via the comment section below. To quote a popular eighties advertising slogan from wine cooler maker Bartles and James, “Thanks for your support.” Now on to the questions.

1. Last week, a friend of mine gave me a burned copy of the band Spoon’s cd “Ga Ga Ga Ga Ga”. At first listen, I thought it was kind of bland and boring but after I gave it a second and third spin, I cannot get the disc out of my boom box. I even went to iTunes yesterday to investigate their music a bit more (in thirty second sampler increments). I am so impressed and (frighteningly) obsessed with this band that I plan to have my valet take me to the store to score my own (legal ) copy of the cd and any others of theirs I can find. That brings me to my first question: How do you get your music these days? Are you a cd buyer, or do you download songs or albums from places like iTunes, or are you out of the music “purchasing” market altogether?

2. Speaking of music, I (guiltily) have to admit that I am really digging this season’s American Idol. Highlights from last night’s show, for me, were Adam’s awesome version of “Ring of Fire” (which I am planning on dling from iTunes later today, btw), Kris’ cover of “Make You Feel My Love”, and Anoop’s rendition of “Always on My Mind”. Unfortunately, I think that either Scott or Alexis is going home tonight, based on their performances last evening. The question to you: Who did you enjoy singing on Idol last night and who’s going home tonight?

3.  I have always prided myself on being a fairly informed guy when it comes to local, national, and global news and current events. Right now, I am using SF Gate (the online edition of the SF Chronicle), Yahoo!, and KTVU.com for my information about the world and it’s going ons. The question: Where do you go online for news and information?

Read Full Post »

With our two roommates attending SF Giants Spring Training games in the Valley of the Sun, the three youngest Picetti’s had the crib to themselves for four days. What follows is a brief synopsis of the extended weekend that was.

Thursday, March 12

Fehmeen and I left school to pick up The Bug from Aunt Danelle’s and Uncle Wonka’s house. She had just woken up from her afternoon nap and her eyes were still puffy. It was so friggin’ cute.

We drove the family CRV to the East Bay and grabbed some dinner at Chevy’s. We all had (yummy) tacos and the manager even hooked Emma up with a big piece of dough from El Machina. She didn’t want anything to do with it at first but once Fehmeen showed her that she could tear little pieces off it again and again and again, she warmed up to the dough.

We dropped the baby off at Grandma Maureen’s and Grandpa Hyena’s house for a sleepover. Nothing is cooler than a baby taking a bath in the kitchen sink.

Temporarily infant-free, the two of us arrived home just in time to catch The Office on tv. Upon it’s completion a half an hour later, I promptly fell asleep.

Friday, March 13

Usually I stay home on Fridays but because the cats were away, this mouse had to go to school with the lady mouse in order to get picked up by their friend, The Hen.

Tanya dropped by ALS Boy HQ on campus delivering a gift created by our friend and coworker, Heather. It was a painted ceramic wizard gnome guy for our garden. Thanks again, H.O.

Mary Lou, aka The Hen, swooped in to pick me up for the day’s activities. Before we departed, we interrupted Fehmeen’s class to present her with our new Gnome for the Home. Seeing that look of utter disgust and annoyance on her face was worth every iota of crap I’m going to have to endure because of that damn wizard. (Just in case you were unaware of this fun fact, Fehmeen is not a big fan of “stuff” that tends to make a place appear cluttery, hence the hate/hate relationship with the gnome).

I worked with Charles on QiGong for our alloted hour and the results were simply amazing. He knew without me telling him that something had happened to me (I fell five days earlier) by noticing that my Qi resembled the broken pieces of a puzzle. After smoothing it out for me, Charles asked me to allow myself time to fully awaken before going about my business of each new day. Message received.

Somehow, I managed to convince The Hen into accompanying me to see the new The Last House on the Left movie. I am totally going to hell for dragging a bridge playing, dish walking, sweet, retirement aged woman to a disgusting and vile horror movie.

We had a post-show slice of (mushroom) pizza and cup of (chocolate) ice cream before heading back to school to rendezvous with my baby mama (and yes, I will get a beat down for that little crack, but again, so worth it).

Fehmeen and I headed over to the East Bay to be reunited with our sweet little Emmabug. We ate chicken and rice and yogurt and returned to our home on a really steep hill. The gnome was placed on the kitchen table to be duly admired by all.

Saturday, March 14

I got out of bed at 1130 am. Apparently, I really took Charles’ advice to heart.

The family unit had a late lunch at Chili’s, followed by several non-productive retail stops. Does anyone sell satin sheets? WTF.

I took a little heat for the “downer” nature of a few of my recent postings. All I can say is that I never know the tone or feel of a piece until I’m well on my way to completing it. I don’t begin the process thinking sad or happy or funny or whatever. It just sort of happens organically as the post takes shape.

We hosted a small pizza and wine party in celebration of Pi Day (3.14). Good times, good times. After our guests left, Fehmeen and I S a B in B and then W EB & D on T until M. (That one’s for you, Rob).

Sunday, March 15

Another weekend morning climbing out of bed at 1130 am. Ahh, it’s good to be me (sometimes).

Grandma and Grandpa Khan came over to babysit Emma and me while Fehmeen got caught up grading some papers. When Fehmeen finished, we were joined by her brother Ameer and we all had dinner at a Persian restaurant in Belmont called Shalizar.

The sun-baked roomies arrived home and after an exchange of pleasantries, Fehmeen and I retired to the office to continue grading papers and writing blogs.

And that was the weekend that was.

Read Full Post »

Oh, The Places I Go

With all due respect to Theodore ‘Dr Seuss’ Geisel, thank you for the divine inspiration. And for the paraphrased title of this entry.

Oh, The Places I Go.

I go to a place of envy when I see people running. How I long to propel myself forward at such a swift pace, feeling as if the earth is a giant treadmill humming along under my ever moving feet.

I go to a place of judgment when I watch people park in blue handicapped spots. I sit in silence while they exit their vehicles and I size them up to determine their worthiness of the spot. I feel terribly guilty when thinking these uncontrollable thoughts, as if my disability being worse than theirs makes me any more deserving than them of a primo parking space.

I go to a place of frustration when I am unable to verbally communicate even the most basic of ideas to people. Most of the time I am game for finding alternate ways to express my thoughts but sometimes I prefer the solace of silence.

I go to a place of despair when I allow myself to ponder a future without me in it.

I go to a place of relief when I am under the loving and expert care of my health care providers and practitioners. My world gets a little easier to live in because of what you do for me.

I go to a place of happiness when my friends come around for a visit. Whether you’re someone I’ve known only briefly or someone I’ve known my whole life, I savor every second of our time spent together. Besides, we’ve got good snacks at our house, too. Hint, hint.

I go to a place of gratitude when I think of the sacrifices my family has made on my behalf. Your unwavering commitment to my health and well being is inspiring beyond my meager ability to adequately describe how much you all mean to me.

I go to a place of comfort every night when the lights go out and Fehmeen lies in bed next to me. As we snuggle together under the sheets and all the world ceases to exist, save for you and I, a safer and more beautiful place would be impossible to find. In the brief time before we drift off to sleep, I am well again.

I go to a place of hope when I look into my beautiful Emma’s eyes. When I gaze into those limpid pools of blue gray tranquility, I catch a glimpse of her future, both near and distant. Walking, talking, singing, and dancing. Reading books, riding a bike, going to school, and making friends. Driving a car, graduating from school, getting married, and becoming a mother. As I watch these events unfold in my mind, I am able to see something else, as well. A future unclouded by uncertainty. A future shared by a father and a daughter. A future of unlimited possibility and love.

Oh, The Places I Go.

Read Full Post »

Get My Cape, Mr Danny Ray

When I reflect back on the past eighteen months of my life, I can’t help but notice how much things have changed for me. From a purely physical perspective, those changes are visually and readily apparent. My walking is an exercise in cautious calculation and my talking is a study of economy of word choice. I need assistance doing the things that everyone around me does without a premeditated, conscious thought. And despite everything that is stacked up against me, I consider myself both lucky and blessed.

One reason why I feel so fortunate has a lot to do with being told roughly when I am supposed to die. One of my neurologists informed me that the average length of time a patient lives with ALS is between two and four years. Another one characterized my time remaining in terms of years, not decades. Given the grim and dire prognosis of my remaining time on earth, what do I have to feel so lucky about?

Well, living with this disease for the past year and a half has taught me a much needed lesson in prioritizing my life. Gone are the days of work first and all else second. I know for a fact that if I wasn’t sick, I would still be a workaholic. So I’ve got that going for me. Also gone is the time that I spend mad or hold a grudge with someone after an argument or disagreement. Four simple words of explanation are necessary here: Just not worth it. So I’ve got that going for me, too.

It’s incredible to think about how the elimination of those two negative activities has impacted my life for the better. By not allowing myself to lug around all that wasteful and damaging psychological debris on my physical and spiritual person, I can truthfully say that I feel better now than I have felt my whole life, despite the morbid label of a death sentence bestowed upon me. Sure, it’s painfully obvious to see the precipitous decline in the form and function of my body but I decided long ago that some ominous and impending expiration date would have absolutely no impact on the way I am feeling right now.

To quote James Brown, the Godfather of Soul, the following words more than adequately sum up my state of being these days: “I feel good!”

Read Full Post »

Older Posts »