Jumping with Abandon

My boys and I just returned from Purity Spring Resort, a tiny bit of heaven in the White Mountains of New Hampshire. We found this spot twenty years ago and we return every year, a modern day pilgrimage. No matter how difficult or complicated, we always return. Always. A lake so clear, it is called Purity. We paddle canoes and watch beavers slide under kayaks for all too brief a time, hug and kiss friends we see only once a year while in this healing place, and then scatter, with the hope we will all make it through another year to do it all again. This year, two good men will never return. We celebrate them with joy for this perfect place.

Here is my friend Jane, a child at heart, jumping with abandon. If you don't have a lake, find one. Make it your own.

Susan Whitman-Helfgot

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The Match – AOPO Excerpts Part 4

Excerpt from prepared remarks by Susan Whitman Helfgot at the 2010 National Association of Organ Procurement Organizations recently held in Baltimore, Maryland.

... From a purely medical perspective, we know that the gift of facial tissue upon transplant ceases to be part of the donor and becomes the servant of a new master, directed by the brain which orchestrates its movements, imbuing it with new expressions, a new joie de vivre. Virtually no trace of the donor is left. But to a grieving widow, or to a mother or father, it is almost impossible to explain. So, why then, do donor families step forward and say yes? ....

AOPO's Mission

AOPO represents and serves Organ Procurement Organizations through advocacy, support, and development of activities that will maximize the availability of organs and tissues and enhance the quality, effectiveness, and integrity of the donation process.

As of July 30, 2010, 107,913 people are on the waiting list to receive the Gift of Life.

By: Susan Whitman Helfgot, Author of The Match available in bookstores & online October 12

Susan Whitman-Helfgot
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Life is a ticket to the greatest show on earth.
Martin H. Fischer

Hospitals and Having the Conversation about Organ Donation

A young mother wrote me a note. She lost her one month old baby and is sad because no one asked her if her little son could be an organ donor.

This was my reply:

"I know very well how much healing comes with the knowledge that a part of your loved one can continue helping another life to go on. I have never lost a child so it is impossible for me to know the depth of your grief, but I am deeply saddened for you and wish you strength during what is still a very difficult time in your life.

A few comments might help you, though. First, doctors and nurses are not directly involved in conversations about organ donation. This is left to family counselors who are employees of organ banks around the country. Sometimes, due to distance, other ongoing cases in other hospitals and simply a lack of staff, these conversations just never happen as there is no one available to speak to a family.

Sometimes, hospitals do not have the resources to help with organ recovery. Not every hospital participates in organ recovery; this is particularly the case with small hospitals who do not have appropriate staff or resources.

It is also possible that your child's medical condition made it improbable or impossible for him to be a viable organ donor and, rather than start a discussion and "get your hopes up", it was determined not to broach the subject with you and he was disqualified at the outset.

But your letter raises a very important point. So little is known by the general public about the process of organ donation. Not only is it important for us to sign up as organ donors, it is imperative that we communicate this to our primary care physicians and to our families that we have done so. Then, they may advocate strongly for us if the situation ever arises. Their first call should be to the local organ bank, even before calling the rest of the family. Although the hospital should help facilitate this, sometimes they are unable to help. There is no advocate like a family advocate."

Susan Whitman-Helfgot
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Donate Life

“Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams.” Ashley Smith

The Match author Susan Whitman Helfgot – AOPO Excerpts Part 3

Excerpt from prepared remarks by Susan Whitman Helfgot at the 2010 National Association of Organ Procurement Organizations recently held in Baltimore, Maryland.

... When our ancestors were on the hunt, a quick glance between two humans often spelled the difference between survival and starvation. Our face is the most intimate and precious part of our body; it is the purveyor of the very air we breathe and the nutrients we ingest to survive. And, every face tells a running story to others every moment of every day beyond anything that can ever be achieved with mere words. It follows, then, that donating a loved one’s face is different and will always remain so.

AOPO's Mission

AOPO represents and serves Organ Procurement Organizations through advocacy, support, and development of activities that will maximize the availability of organs and tissues and enhance the quality, effectiveness, and integrity of the donation process.

As of July 30, 2010, 107,913 people are on the waiting list to receive the Gift of Life.

By: Susan Whitman Helfgot, Author of The Match available in bookstores & online October 12

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Modern Miracles & Making Fast Friends

I traveled back from Los Angeles last night with my boys. A flight attendant named Jennie recognized me from Boston Med. We talked and became fast friends. Face transplants are a wonder of modern medicine. My experience with Jennie is a modern miracle of another kind. From a cable channel in San Francisco, she watched a show. A week later, at 35,000 feet and 1500 miles away, somewhere over the Mississippi River, she met me on a plane. We are now fast friends. What a world we live in. Rejoice every day.

Susan Whitman Helfgot

It could be the most important talk of your life for a stranger on a waiting list. http://bit.ly/bwX56y

The Match author Susan Whitman Helfgot – AOPO Excerpts Part 2

Excerpt from prepared remarks by Susan Whitman Helfgot at the 2010 National Association of Organ Procurement Organizations recently held in Baltimore, Maryland.

... My husband, Joseph was colorful and brilliant, possessed of a keen wit and was ruthlessly loyal to his friends and his family. He had fought so hard to live, for so long, that his death was almost a surprise to our family and to his caregivers. Being here with you today reminds me of that enormous loss. But look at what been gained. When Drs. Dubernard and Devauchelle performed the first face transplant in Amiens, France five years ago, it electrified the world. And, as we know, this achievement, although a medical success, was greeted with great skepticism and even, ridicule. We have traveled far from that day with several face transplants performed worldwide.

AOPO's Mission

AOPO represents and serves Organ Procurement Organizations through advocacy, support, and development of activities that will maximize the availability of organs and tissues and enhance the quality, effectiveness, and integrity of the donation process.

As of July 30, 2010, 107,913 people are on the waiting list to receive the Gift of Life.

By: Susan Whitman Helfgot, Author of The Match available in bookstores & online October 12

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Bowled over by Helfgot Boys, Ben and Jacob.

Jim Maki and I sat on a stone wall in the back of Brigham and Women's Hospital yesterday. A newswoman was interviewing us about ABC's upcoming Boston Med show this Thursday night. She asked how we felt about the show. Bittersweet came to my mind as one of its main characters isn't here to enjoy all the limelight -- and anyone who knew Joseph knew how much he loved the limelight! But happy, too. The show is great, Jim is doing great, and my family vacation looms in 3 days! And my son actually put his folded clothes in his drawer... I was "bowled over".

Thank you all

I've received so many notes today from those of you who saw last night's final episode of Boston Med. Thanks for your love and support. A young woman wrote to me with the following. It captures everything.

I have a mission to find you to tell you what I think. Thank you for what you did, I'm still crying. You and your husband are the most unselfish persons and such words cannot describe what I feel about what you did to help out another human.

A warm tear roll down my face

a warm face that can be touched

a face that can be felt

a life that will live on

Such a soul that will live on.

To you, your family, thank you, thank you for making a gift of giving.

I'm am sorry for your loss. I will make give the gift of life, donating my blood to Kaiser in your name. That is something that I can do.

I thank you, bless you and your family. You know that he will live on helping another family. The ultimate gift of love.

Thank you, thank you....

Soraya Nakamura

Thank you Soraya!

Sue

"The Match moves, shakes and clings" as quoted by Hsiu-Lan Chang.

I begged Susan Whitman Helfgot for the advance copy of The Match and promised to return it to her in 2 days. The reverence I developed for the story made it hard to let the book go. The narrative is fast-paced and packed with facts, tid-bits and anecdotes, but every few chapters or so, I needed to stop reading and cradle the book with respect, mull the extraordinary progression of events and contemplate the courage of the characters with awe and affection. It could have been tempting but Susan never resorts to sentimentality. Her armor is pragmatism, humor, strength and an absolute conviction in what her husband and life partner believed in and wanted. What Joseph, Susan and their family went through is beyond my imagination. The gift of Joseph's face gives James Maki the hope of a normal life. In turn, through The Match, Susan offers a powerful new life to Joseph. You won't be able to "shake off" the clinging effect of The Match. It proposes to us that our FINAL moment can also become our most brilliant.

By: Hsiu-Lan Chang

Anything you can do to help suggest and share The Match with friends and family to help would be appreciated! Thank you! Susan

We are miracles, made from stardust - Thoughts on Life, Perseid Meteor Shower & Boston Med Finale

Those of you who know me well, know that I am a sucker for things that twinkle in the sky. I am still awed, even after years of studying science, when I pause to consider that my bones, spun into being by chemically rich RNA, are made from calcium and other elements created during supernova explosions that occurred many hundreds of millions of years ago. Somehow, these chemicals magically found their way here, to our tiny planet and into our complex biological bodies carrying forth the torch of creation. We are miracles -- made from stardust.

It is fitting that, as the final episode of Boston Med airs tonight, the Perseid Meteor Shower of 2010 will perform overhead. As we pass through Swift-Tuttle's shattered comet tail, stardust rich meteors will rain down upon us. Tonight, as a historic face transplant unfolds on television, the sky will deliver its bounty outside, unaware of our small medical triumph. I encourage you to watch both of these amazing shows.

Final Episode of Boston Med. Tonight on ABC. 10 p.m. EST.

Perseid Meteor Shower. Tonight on Planet Earth. Northern Hemisphere. Any darkened sky channel near you.

"May you live in interesting times."

Chinese Proverb.

Susan Whitman Helfgot

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AOPO Excerpts Part 1

Excerpt from prepared remarks by Susan Whitman Helfgot at the 2010 National Association of Organ Procurement Organizations recently held in Baltimore, Maryland.

... finally removing your wedding ring from your finger after a period of time signifies acceptance of a loss. So, too, is saying, “yes” when asked to make the gift of a loved one’s organs. It is powerfully difficult, requiring an immediate acceptance of the fact someone we love dearly has just died, our yes signifying the staggering truth, “Yes, I realize he is gone and is never coming back." But the donation of a face is a very different kind of organ donation, tapping into a different kind of acceptance, probing the very deepest emotional spaces we inhabit as human beings.

AOPO's Mission

AOPO represents and serves Organ Procurement Organizations through advocacy, support, and development of activities that will maximize the availability of organs and tissues and enhance the quality, effectiveness, and integrity of the donation process.

As of July 30, 2010, 107,913 people are on the waiting list to receive the Gift of Life.

By: Susan Whitman Helfgot, Author of The Match available in bookstores & online October 12

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"I loved the way the book moved around, loved learning about your beloved husband and all the other characters." Lee Woodruff The Match

Susan Whitman Helfgot asks readers and fans to write to the United Nations

Reading an article in Time Magazine about a young woman who was disfigured in the mid-east. I feel like the little boy in Holland who plugged a dyke for which there was no repair. http://www.time.com/time/covers/0,16641,20100809,00.html

My call to action. Write to the United Nations: http://www.un.org/womenwatch/daw/vaw/index.htm

Sadly yours,

Susan Whitman Helfgot
Author, The Match
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Don't ever run in heeled sandals

I ran down Ave. Louis Pasteur yesterday in ridiculous humidity, late to a lunch with my advisor from Simmons College. As I sped across the street in my once pressed, now shriveled, white linen suit slipping in barely-there sandals, I realized why they invented New Balance and Puma. Moral: don't ever run in heeled sandals. Especially in an old city like Boston with cobblestone sidewalks. What on earth was I thinking? I sprinted past Harvard Medical School trying to think of a creative way to ask for another extension. She's heard it before, the "things don't seem to be slowing down anytime soon" speech. As I burst through the door out of breath, she gave me a "I know, you're flat out and you'll be needing another extension" look. Which brings me to faces. Sometimes you just don't need words. But you always need a face. I'm glad Jim Maki has been given a chance to live life as a man with a face.

Susan Whitman Helfgot

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Caregivers of Team Heart Rwanda and The Match

I sat in an office building this week in Boston's South End meeting with members of Brigham and Women's Hospital. We had gathered to discuss plans for an upcoming fall event honoring one of my favorite groups, Team Heart Rwanda. Each year, Boston cardiac surgeons, nurses and technicians travel to tiny Rwanda and perform life saving surgery for the nation's young people. They do this on their own dime and time. Sadly, in a county of 10 million, there is not one trained open-heart cardiac surgeon. They were either killed or fled during the genocide. As the infrastructure to support their work is slowly rebuilt, children have been dying without simple penicillin to treat strep infection. Many who survive childhood with untreated strep are left with rheumatic heart disease and will soon die without open-heart surgery.

Team Heart includes many wonderful caregivers who kept my husband alive for a long time, and The Match will toast them at a gala on November 10th at Harvard Medical School presenting a share of proceeds from book sales. But, as our discussion turned to corporate sponsors for the party, I was far away, looking out the window at the Prudential Center across the street. It seemed impossible to believe that just a few years ago, Joseph and I bought our first house right around the corner; a bombed out brownstone in what was then a rough and tumble not even ready to be gentrified kind of frontier-land. My old neighborhood was almost unrecognizable to me now. Boston Duck Boats filled up with chattering tourists in front of a Cheesecake Factory. Tall buildings loomed over what was once cracked sidewalk.

So much has been created and much also lost in the intervening years since those early days when colored sheets tacked up on windows served as early my first curtains. While Rwanda was losing a generation, Joseph and I were busy creating two members of a new one. Team Heart Rwanda is a reminder that nothing is ever completely lost.

Visit Team Heart Rawanda. http://www.teamheart.org/tag/susan-whitman-helfgot/)

Susan Whitman Helfgot
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