An Oracle Amongst Us

Legend has it that Babe Ruth called his shot.  He stepped out of the batters box, pointed to an area beyond the centerfield wall and promptly hit the ball over the wall right into the pages of baseball history and lore.

Fast forward to the 21st century and you would be hard-pressed to produce written documentation by any professional pre-season prognosticator who predicted that the San Francisco Giants would win the 2010 World Series.

However, that is not necessarily true here at The Adventures of ALS Boy blog.  In my April 5, 2010 post, I said that the team would make the playoffs and lose in the first round.  Two days later my friend and longtime reader Suzanne commented that the Giants would win it all.

Check it out here for yourself.

Wow!  Awesome called shot, Suzanne!

What an excellent day for a parade.

Advertisement

Read Full Post »

Gamer

I have been a slave to slang for as long as I can recall.   A lot of it comes from movies,  television,  and music but the terms that have the most staying power for me typically come from our national pastime.  Phrases like a cup of coffee,  rounding third and heading home,  and even a couple of Beat L.A.’s have become Picetti family vernacular — albeit on a far-less-than-you-might-think-from-this-sentence basis.

The reason that I am bringing up the whole sports vocab thing from my intro is that there is one word that I would use to describe my mom these past six or seven months and that word is gamer.

In the sporting sense,  a gamer is a person who puts it all out there day in and day out regardless of whether or not she is tearing the cover off of the ball or is mired in a 0 for 20 slump.  A gamer plays her ass off even when the game is out of reach.  A gamer steps up to the plate as if it were bases loaded with two outs in the bottom of the ninth inning of game seven of the World Series and her team was down by three runs.

My mom was such a gamer that she made the decision to keep the seriousness of her illness between her and her oncologist from December until this past Tuesday morning in order to not have anybody worry about her so she could continue taking care of her family as if nothing was wrong with her.

Even this past week, in the bottom of the ninth of her life, my mom dug in deep in the batter’s box, ready to take her final swings.   She hit the ball hard, put her head down and hustled towards first base.  In true gamer fashion, she continued her stride even after the ball had cleared the fence.   And as my mom was rounding third and heading home in the early hours of Saturday morning, every other departed member of our family’s starting lineup was waiting around home plate for the latest sure-fire first ballot Hall of Famer to score the go-ahead run.

Read Full Post »

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

Read Full Post »

Shift

“Did you notice how the energy shifted inside your body?” asked Charles upon completing the Qi Gong session.

“Yeah, I think so,” the other man said. “I mean, visually speaking, the colors that I was seeing in my mind got a whole lot more vivid and vibrant around the middle of the treatment.”

“Hmmmm,” replied Charles. After a brief contemplative pause, he continued speaking. “A prayer being accepted caused the shift within you.”

As the man exited the building and approached his car, he brimmed with the excitement and anticipation of wanting to tell his wife of the breakthrough he’d apparently just experienced. The man reconsidered his plan when he noticed that his wife was upset and crying.

“After I dropped you off, I drove to Sunnyvale to buy some gas. Then I cut across town to get a car wash and I knew as soon as I grabbed my purse to pay for it that I had left my wallet on the top of the car at the gas station.”

Her voice wavered slightly as she wiped away the tears from her eyes.

“The whole way back to the gas station I prayed and prayed and prayed that someone would pick up that wallet and give it to the attendant. But when I got there, nothing. I even retraced my route back to the car wash. I can’t believe that nobody returned it. What the hell happened to the good people in this world?”

Five minutes away from their home in San Carlos, the woman checked her voicemail.

“Hello, I’m calling from SMERC and I just spoke to a woman named Nicole and she said that she just found your wallet. Her number is … ”

As his wife’s temperament shifted from glum to gleeful, the man immersed himself in thought about the events that had just transpired.

When he was first informed of the change in his energy, he envisioned a time in the immediate near-future where his precipitously declining body would methodically begin to regenerate itself.

His thought-process shifted away from himself when he realized the amount of tedious busywork that a lost wallet would put on his already overwhelmed wife.

He then connected the shared contents of the lost wallet with the shared burden of his disease and the man clearly saw the absolute interconnectivity between him and his wife.

It was only during the time she was on the phone with Nicole when he realized the true nature of the shift in his energy amidst his Qi Gong session. The prayer being answered was not only his wife’s, but his own, as well.

He just didn’t know it at the time.

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 »

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.

Read Full Post »

This I Believe

I believe in the power of positive thinking. I always have and I always will. It’s more than a mindset and less than a worldview (if that makes sense). I don’t swim in a sea of blind optimism nor do I think that the sky is falling. I suppose it boils down to this: when you think bad things are going to happen to you, they probably will.

I believe that things happen for a reason. I like to look at my life as a (somewhat) linear series of events where one thing leads to the next thing. Why else would I have begun privately tutoring students while working for Continental Glass and then quit that job in order to attend the College of Notre Dame to get my teaching credential and then to get a phone call at the school from one Diane Campbell, a teacher at La Entrada, pleading with the program director to send a credential candidate to her asap to take ten students from an overcrowded math class off of her hands only to become a staff member there the next year and to then meet Fehmeen by the copy machine in the staff lounge which led to our marriage and of course, The Bug. Yeah, you could say that I believe that things happen for a reason and sure, I’ve got ALS now, but at this particular point in time, the reason why hasn’t been completely revealed (although I have a fairly strong inkling why).

I believe in the people that have rallied around me. From Fehmeen, who has demonstrated superhuman strength and unconditional love for me throughout this nightmare called motor neuron disease to my parents, John and Judy, who essentially gave up their post-retirement lives to help take care of me and help us raise Emma to the ever-resilient Khan family who are there for us for whatever we need, day or night to our families, friends, co-workers, doctors, care providers, former students, current students, their parents, and even strangers. Every single one of you have gone above and beyond the call of duty to be there for me. I don’t say it nearly enough, but thank you.

I believe in the power of Emma. I knew she was special even before she was born when she delayed her own birth by ten days past her due date so that she and I could share the same birthday of April first. I believe that on some deep, subconscious level she knows, and has always known, that her Daddy has something going on healthwise and she behaves accordingly. She responds to my questions in our unique shared language, she sits patiently on my lap whenever we hang out together, and she always has to be touching my hand, arm, or leg whenever she is sitting or laying near me. The crazy thing is, and I’ve noticed this since she started doing more than eating, sleeping, peeing and pooping, that whatever skills and abilities (talking, grabbing, lifting, crawling, and rolling over) I slowly start to lose, she slowly starts to gain them. I know it may sound a bit odd, but think about it; she is developing the muscles to do these things at the same as mine begin to die off. It’s like a weird transfer of superpowers or something (so says this comic reading geek). Anyhow, regardless of all of that, the feeling I get inside when I look at her or even think about her, I forget completely about what’s wrong with me and I submerge myself into the miracle that is my daughter, Emma.

I believe that when I replaced my five metal fillings with non-toxic amalgam ones in June and when I had two dead, infected, metal post-filled root canaled bottom molars yanked out in July that I pro-actively removed a major source of toxic poison from my body and nervous system. (The way I look at it is like this: What area of my body is most affected by ALS? My tongue (speech and swallowing). And where was there a major source of poison near those areas of affect? The teeth in my mouth. Coincidence? I think not). Once I took care of eliminating some obvious areas of toxicity, the rate of my ALS progression has appreciably slowed down in comparison to the rate earlier on with the metal in my mouth.

I believe that God gives you exactly what you can handle.

I believe in my ability to outlive the average time that a typical person survives with ALS. The first neurologist to diagnose me characterized the amount of time someone lives with ALS is more along the lines of years and not decades. I decided right then and there that I was going to be an exception to that somewhat discouraging rule of thumb.

I believe that I am the luckiest man on the face of the earth. I know that these words have been uttered before by other men and women who have faced a similar fight during their lives. While I cannot speak for them and their reasons for saying it, I know in my case that I didn’t really start to appreciate the life I was living until I was told by various doctors that I was dying. I began to see what the truly important things in my life were. Although my appreciation of all the gifts in my life is still a work in progress, and I am sure that I will continue to make plenty of mistakes, rest assured, I am an apt pupil who still has a lifetime worth of lessons to learn.

Read Full Post »