“All I want for Christmas…”

Jagatman’s amputation

“All I want for Christmas…” It isn’t two front teeth. (Did you know that Nat King Cole does a version of that song?) 

It’s a leg.

With all the shopping we do at Christmas, imagine wishing only for a leg. When I visited Nepal in September, I reported on one of our “boys,” Jagatman. He’s only 26, same age as my daughter Tara. Unlike her, his life is so uncertain and frail. He has hemophilia; he lives in a country that purchases no factor. 

Jagatman at work

And he lost his leg due to an untreated bleed. Through Project SHARE, we provided factor for the surgery to remove his leg, to save his life. And he’s so grateful to us. Sigh, the fates must be angry. The April 25 earthquake ripped apart his brick home. I stood before the rubble of what once was the home of the Rajbchak family. 

But he has a mobile phone repair shop (Save One Life helped get him started with funding) and I saw him eagerly at work. He’s good! Industrious, focused and determined to succeed. It must have taken a lot of courage to ask me to help him purchase a leg. He’s outgrown his current prosthetic; it hurts him. Given the high tolerance for pain these boys have, it must re

ally hurt him. He earns only about $500 a month from the shop, and must pay rent. The leg he showed me in a colorful brochure costs almost $4,000. A fortune. A king’s ransom.

With brother Monsoon,
who also has hemophilia

But I promised this handsome young man that by Christmas, we’d buy him that leg. What better gift?

And last week we made good. The money was wired and he will soon have his leg. Despite a chronic disorder, limited access to medicine and poverty, Jagatman is beating the odds. His attitude is astounding; his determination like Rocky’s. His focus like a laser beam. 

And he’ll never know that the gift he’s given me is so much more than anything I can ever give him. 

Merry Christmas to our friends in Nepal, and those with bleeding disorders everywhere!

Great Book I Just Read

Life [Kindle]
Keith Richards

Best rock bio I have ever read. Told by the iconic guitarist of the Rolling Stones, Richards almost seems as surprised by his life’s journey as you are bound to be after reading this. Meticoulously detailed, Richards shares his humble beginnings, his teen encounter with life long rock partner Mick Jagger, their rocky road to fame, the drugs, the alcohol… but what makes this bio so different is first, the Stones are one of the greatest rock bands in the world, from the early 60s and still playing! Second, Richards delves into the music: his love of American blues, what he wrote, why, how he got ideas, the chords, the notes, the guitars. This is what I have been wanting to know: how do these musicians create? He’s a voracious reader, loves his library, and lives in Connecticut, a few hours from me. He’s a survivor for sure, and what a story he has to tell. Five/five stars!

A Christmas Legacy

My brother Tim sent me this story of a fellow Massachusetts family, which may have otherwise gone unnoticed in our community. I’ve never heard of the Pastorellos; any of our readers heard of them? It’s a beautiful story just made for Christmas. 

Son Rekindles Family’s Holiday Tradition

SOUTH HADLEY, Mass. (WGGB) — John Pastorello made it his mission to rekindle his family’s beloved holiday tradition.
This year, Pastorello brought back his family’s Christmas light display — something they started together nearly 20 years ago.
“I always loved the tradition of always putting all the lights together with my family,” explains Pastorello. “And, I just felt like something I needed to do.”
More than 1,000 Christmas lights and 100 lawn ornaments now adorn Pastorello’s front-and-back yard. He told ABC40 why this event is so significant.
“My dad’s brother was a hemophiliac who got a bad blood transfusion,” explains Pastorello. “So, my dad put up a couple of Christmas lights [in 1989] and was thinking about his brother a lot because he spend a lot of time in hospitals. And as a child in hospitals, he really loved Christmas.”
The holiday season was his uncle’s favorite time of year, which made this Christmas an emotional one.
“It was nice to see them out again — it’s still a lot of work,” says Richard Pastorello, John’s father. “But to see them out, the lights on and everything — it brings back the memories and everything that we did. “We wish that — our kids were pretty young — could see their Uncle Roy because it kinda meant a lot.”
Many of the lawn ornaments are original. Some, came from Richard Pastorello’s home in Belmont — where he grew up.
The planning process started in October and then the Pastorello family worked hard until the last week of November to set up the display.
Not only did Pastorello take on the tradition, but also the hefty $500-a-month electricity bill.
“I actually delivered newspapers for almost a year — and I was trying to collect money, in order to update my electrical and all that,” says Pastorello.

The family will celebrate the end of the holiday season on New Year’s Eve, when the light display will go dim — until next Christmas.

Great Book I Just Read
the Light We Cannot See [Kindle]
Anthony Doerr
This wonderful fictional story, set against the backdrop of World War II France and Germany, is about Marie-Laure, blind since age six, daughter of a locksmith for the Museum of Natural History in Paris. Parallel to her life story is that of Werner, a bright and curious orphan German boy with a knack for electronics, who happens to listen to radio science programs, told by coincidentally Marie’s great-uncle. The children grow, and as WWII engulfs their countries, each tries to survive–Marie by moving in with her great-uncle, and Werner in the German army– while all the time are on a path of destiny to meet one another. A subplot involves a rare and precious diamond, secreted away by Marie’s father. The conclusion brings all the intricate subplots together magnificently. A national book award finalist, the writing is superb and character development sublime. Sure to be a Hollywood movie someday. Four/five stars.

Hemophilia Leadership: Jesus’s Example

Christmas is celebrated this week, and has me thinking of leadership. I have worked with many emerging leaders in the international hemophilia community, who are volunteering to help their country’s people with hemophilia. It’s a daunting task: these volunteers are typically mothers or fathers who struggle daily to make ends meet, and raise with a child with hemophilia without factor. To take on the mantle of leadership, and the challenge of forming a nonprofit without experience, money, resources or even much time, is sheer bravery. We here in the US cannot even begin to imagine their daily lives. Every step is hardship.

Caravaggio’s Adoration of the Child,
in the Uffizi Gallery, Florence, Italy

I sometimes think of the example of Jesus when I approach new leaders, or try to inspire new leaders. Jesus was born into poverty too. He had no earthly resources. He wasn’t trained to be a leader–he was a carpenter. He saw the suffering around him; indeed, his very birth triggered the “Slaughter of the Innocents.” Imagine knowing that fact as you are growing up. He was gifted with the ability to heal. And he had to sacrifice much: leave his mother and father, travel far from home, find disciples, spread his message without any use of newspapers, radio or cell phone. No slogans, no banners, no World Jesus Day. It all came down to him.

Our leaders in Africa, South America and Asia also face much sacrifice and struggle; they need to find disciples; they need to educate the masses. On top of it they have a child with a painful and life-threatening disorder. But these Hemophilia Leaders follow the same style of leadership that Jesus exemplified. They are–or should be–servant leaders.

A servant leader puts the needs of his people over his own desire for control, power, acquisition, or ego. He is attuned to the needs of his people, and seeks to meet them. In hemophilia, this means helping find those who suffer, putting them in touch with a treatment center, educating them about their disorder, and above all, getting them factor. 

So in a way, Hemophilia Leaders can “heal”: they learn who to reach out to (doctors, WFH, Project SHARE) for help, for factor. I’ve witnessed so many amazing leaders, some young, some beyond retirement, dedicate every minute of their free time to helping the suffering in their countries. And this while they themselves often need help. Imagine a Hemophilia Leader contacting us at Project SHARE, while they themselves are in pain from a bleed, requesting help for one of their patients. That’s servant leadership. 

They are stoic, strong, driven with an inner passion, rise above their own pain and suffering, and above all things, have faith. Faith and trust that someone will help them, that they can change the situation in their countries to make it better for a new generation. Faith in themselves, because they often believe in a higher power helping them, whether a deity or an organization, or both! They have a vision that compels them. They are driven and dedicated. Meditating on this at Christmas, I am in awe of these Hemophilia Leaders–patients, parents, doctors–and I cannot wait to serve them in 2015. What a gift they are to us at Christmas time and throughout the year.

Book I Just Read
Jesus, CEO
Laurie Beth Jones 1995

What skills, attributes and style did Jesus possess that made him a success and a “fisher of men” that leaders today can emulate? That’s the goal of this book, broken down into easy-to-read chapters that pose personal questions to consider at the end of each. The book may be good for leadership novices, but lacks a sharp, in-depth comparison of Jesus’s life and skills compared to those of a modern-day business person (such as provided by Margaret Morrell in Shackleton’s Way). This is a superficial, often trite comparison of Jesus’s skills, mindset and style to modern day leaders. Some are stunningly obvious: He planned. He formed a team. He had a vision. He expressed himself. He forgave them. Simplistic, and questionable at times. (“He came from left field.” “God surprised people.” What? I thought his coming was prophesied, like for centuries?)
There are much better books on Jesus and leadership. Try John Maxwell’s books on leadership and skip this outdated one. It still sells for $10 on Amazon! One/five stars.

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