Facing terminal illness head-on, beloved teacher offers lessons in courage and hope
Is it possible to sum up a life in six words? Jason Picetti, a man who embraces challenge, recently decided to try.
Inspired by SMITH magazine's "Six Word Memoir" project, the La Entrada Middle School math teacher wrote and rejected several mini-memoirs before settling on the half-dozen words he believes best describe who he is, at present, in the roiling, rapidly changing world he has come to inhabit: "Speech and movement compromised; spirit unaffected."
Those who know and love "Mr. P" have over the last year witnessed the process that has irreversibly compromised his speech and movement, reducing his spoken words to what he calls "mumblese" and confining him most of the time to a wheelchair.
But they also have marveled over the courage and tenacity shown by the young husband and father who, in February 2008, was diagnosed with a terminal illness: amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, a neurodegenerative disease affecting the nerves cells that control muscle movement.
The diagnosis sent the school community, as well as his close-knit circle of family and friends, into a tumult of disbelief and sorrow. Married less than two years to fellow La Entrada teacher Fehmeen Khan, and with their first child on the way, the man who had never taken a sick day off from the classroom seemed the most unlikely candidate for a fatal illness.
"... Mr. P could not have this, they must be mistaken, this cannot happen," student Diane Masket said in a graduation speech that June, recalling her first reaction to the news.
Diane was among the eighth-graders in Mr. Picetti's algebra class during what turned out to be his last year of teaching. Once the students finally accepted the truth, their learning experience went far beyond algebra. They were given a powerful lesson in courage, which, Mr. Picetti taught them by example, means "facing your largest fears and tackling them until they are not a fear anymore," Diane said in the speech.
"The class turned out to be as much of a class on life as it was on math," Ms. Khan said in a recent interview. Mr. Picetti added: "I never once thought about quitting. I wanted to finish the year, no matter what."
Although he struggled with the decision about whether to return to the classroom last August, with special equipment to help him communicate, he eventually decided against it. "It came down to wanting to spend more time with Emma," their new baby, he said. "It was an important lesson for me — learning priorities."
This school year, he has accompanied his wife, a sixth-grade teacher, to school most days, spending much of his time in Room 25, where teachers come by to visit and play card games on their breaks, and former students drop by to talk.
Here, he also immerses himself in another pursuit: Since late last August, Mr. Picetti has blogged to the world The Adventures of ALS Boy — a name he chose in reference to "my love of the geeky world of comics," he says.
Why would a blog about a fatal disease have more than a hint of fun and joviality imbedded in the title? Well, to answer that question as succinctly as possible, I guess that I am tired of feeling sorry for myself. I am tired of crying about it and I refuse to let this disease rule my life and control my spirit. ... I plan to enjoy every second I have with my wonderful family and incredible friends. I plan to do things and go places and experience life with a (relatively) reckless abandon. — The Adventures of ALS Boy, Aug. 22, 2008
Jason and Fehmeen, who married in June 2006, did their share of crying after hearing the ALS diagnosis. Since the previous fall, he had noticed a change in his ability to talk, and to sing — a skill of great importance to the ardent musician who played keyboard and sang in a band for 15 years.
At the time the symptoms began, Ms. Khan was three months pregnant.
As other symptoms began to appear, Mr. Picetti went to his doctors for help. He was at first mistakenly diagnosed with, among other things, Bell's palsy.
Physical therapist Robin Tobias, whose daughter, Leah Worthington, had been Mr. Picetti's student, began working with him in December, and had "a sinking feeling" that he had been misdiagnosed and that he was suffering from ALS, Ms. Tobias says in an e-mail. She urged him to go back to Kaiser to be re-evaluated, and the subsequent testing confirmed her fears after "a grueling couple of months" of uncertainty, she recalls.
"When I found out I was pregnant and I told (Jason), it was probably the happiest moment of both of our lives," Ms. Khan says. "Who would've thought that only a few months later, we would experience the worst moment of both our lives together?"
This was February, and their baby was due the next month.
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. — The Adventures of ALS Boy, March 12, 2009
But Emma had other plans — she was 10 days late arriving in the world. "And I'm always very punctual," Ms. Khan notes with a shrug.
Emma's tardiness may have made her mother's life a bit more difficult for a time, but it gave her father tremendous joy: Her delay means father and daughter share a birthday. On April 1, Mr. Picetti turns 40, and Emma logs in Year No. 1.
"People say there's a reason for everything," Ms. Khan says, but "I don't know what the reason is for what has happened in our lives." She notes that she and Jason discussed whether they should start a family so early in the marriage, but the 13-year age difference ultimately made it seem like a good idea.
"If he was sick, and we knew it, would we have ever had a baby? Probably not," she says.
Although the arrival of a baby amidst such tumult was difficult, they are convinced they made the right decision. "When you meet Emma, you'll know why," Mr. Picetti says, beaming.
"Emma has really been our hope," he says, writing later in an e-mail: "In the months prior to her birth, when we were anxious about having a baby, and the shocking newness and sadness about my diagnosis, Emma was an oasis that the two of us could go to in order to escape the seeming nightmare of our current reality.
"Once Emma arrived, she became more like an angel sent to our little family to provide us with more joy and light and love than we ever imagined. And especially now, when I see and interact with my beautiful baby, I forget all about things like my life expectancy with ALS in lieu of visions of our shared future together."
The baby's name was his idea. The couple debated the name for some time before she was born, but at 3 o'clock one morning, Mr. Picetti had a dream, he says in his blog. "I woke Fehmeen up immediately and told her 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."
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. — The Adventures of ALS Boy, March 12, 2009
After the birth of Emma, and with the start of the school year last August, the couple found the burdens of life increasingly difficult. They were living in a Sunnyvale condo, with Fehmeen's parents, Iqbal and Maheen Khan, in the East Bay and Jason's parents in San Bruno.
With Jason's symptoms becoming progressively worse, they started looking for a home closer to his parents. But early on in the search, John and Judy Picetti, Jason's parents, said they were willing to sell their home of 40 years, where their only child grew up, and buy a home where they could all live together. Judy Picetti was devoting much of her time to being one of Emma's daytime "nannies" while Jason and Fehmeen were at La Entrada (Fehmeen's mother shared the duties). The older couple would help with the care of both their son and their granddaughter while sharing the home, they proposed.
"I knew there wouldn't be anyone else in this world, other than his own parents, who would love Jason and care for him as much as I do," Ms. Khan says, explaining her willingness to make the move.
The extended family now lives in San Carlos, near several of Jason's aunts and uncles.
I think about that rainy day ... when I was told that I was dying and how it feels to be me right now, how it feels to be living my life right now, doing the things I am doing right now, and (it) doesn't really feel like I'm dying. I'm certainly not living my life the way I imagined it but who really does, anyway. Who really does? — The Adventures of ALS Boy, Feb. 11, 2009
There is no known cause for ALS. It strikes unexpectedly, and initially affects the afflicted in various ways, although the symptoms and degeneration become more common to all as the disease progresses.
While Mr. Picetti isn't able to live as he imagined he would live at the age of 40, there are certain things he's been able to count on, most of all, the support of the school community and others who love him.
Last October, a party — "Mr. P, You Rock" — was held at an Atherton home. More than 500 people, including many of his former students, attended.
The event was a fundraiser to help with Mr. Picetti's medical costs, which are significant: The alternative treatments he seeks for the incurable disease are not covered by insurance. Each week he attempts to relieve pain and symptoms through physical therapy, acupuncture, qigong and other therapies. (Ms. Tobias provides her services at a Menlo Park medical clinic free of charge.)
Teachers from both La Entrada and Las Lomitas have donated unused sick time that, along with Mr. Picetti's unused hours, allowed him to stay on the payroll through the end of April. That development was the result of a new catastrophic leave program put in place by the Las Lomitas school district after it was suggested by teachers Su Logie and Diane Goldman.
Ms. Logie said many school districts have such programs, and she and her colleagues wanted to create a support system quickly "because it was clear Jason was deteriorating quite rapidly."
In addition to financial support, Mr. Picetti has been showered with cards, letters and other good will gifts from students and their parents. "Throughout this year, you have struggled with many things, but you never turned your back on us," student Kathryn J. Coyne wrote last year. "You woke up every morning and came to school, which made all the difference in the world to us. ... You showed each and every one of us the true definition of courage, strength and perseverance."
Leah Worthington and Julia Sommer, now sophomores at Menlo-Atherton High, took math classes from Mr. Picetti before he became ill, and said he was teaching them "life lessons" even then.
"He 'cultured' our class," Leah says. He taught us about math, but taught us about music, movies, writing ... how to score baseball. I felt like I knew more when I was with him."
Julia adds: "He made me more open ... always wanting to learn more, willing to learn about new things."
The best friends used to have lunch with Mr. Picetti and Ms. Khan almost every day. Now, they still show up in Room 25 to visit their former teacher. And they continue to learn from him — lessons about how having the right attitude, and "how you approach an illness or any other challenge really makes a difference," Julia says.
When he first started carrying a cane, she recalls, he didn't really use it. "It showed us who he was. It showed his independence and his strength," she says.
Leah adds: "He wasn't going to let the disease take over his life."
Adventures of ALS Boy
Jason Picetti's blog, The Adventures of ALS Boy, is at alsboy.wordpress.com