Thursday, November 14, 2013

What Do You Desire in Your Leaders?

I read an interview in the Reader's Digest with author Malcolm Gladwell, whose most recent book is called "David and Goliath: Underdogs, Misfits and the Art of Battling Giants." The accompanying image (a sculpture of David, preparing to do battle with Goliath, by Bernini)
 drew me in; several quotes from the interview have stayed with me, and are worth reflection - particularly in our current political and business climate.
Reader's Digest Interviewer: What's the one thing you'd like us to take away from your book?
Malcolm Gladwell: That the greatest things in the world come from suffering.* It ought to give us solace. A lot of what is most beautiful about the world arises from struggle.
RD: You once said that we are always drawn to charismatic leaders, even though things often wind up badly. Why do you think that happens?
MG: Mistake number one is that we're interested in charisma. We often simply go for the physically imposing or attractive. Or we choose narcissists of one variety or another...We are also overly in love with certainty as a trait in our leaders.
 After reading and reflecting on those words, the following popped into my "inbox:"
"In the second half of life, you have begun to live and experience the joy of your inner purpose...At one and the same time, you know what you do know (but now deeply and quietly), and you also know what you do not know...Many politicians and clergy know what they know, but they don’t know what they don’t know, and that’s what makes them dangerous...A creative tension in the second half of life, knowing what you know and knowing what you don’t know, is a necessary one." - Richard Rohr, adapted from Adult Christianity and How to Get There
In order to exercise leadership or employ our expertise, we must have courage. We must be willing to stand for what we know to be true. However, it takes great courage and humility - one might call it integrity - to admit to ourselves, and to others, what we do not know.

This integrity is essential in business, in public service, and in our personal lives, if relationships are to be healthy and sustainable. Great damage is done by individuals who - in pursuit of power, wealth, influence or "success" - do all that they can to appear to have great expertise and certainty, beyond the scope of their true ability. "I don't know...but I will find out" is a perfectly acceptable answer - and it can deepen trust in a relationship.

Further damage ensues when profit for our own entity is the only goal we seek. There is evidence of a "me first" standard in business today, witnessed by the conduct of executives and corporations in the news (for one awful example, see this article in Vanity Fair). "Me first" is a not a sustainable model in relationships; this lesson is taught in kindergarten.

Integrity should be our highest standard, far more than profit. Profits - and fortunes - will come and go, but character is lasting. We have the potential to create a world in which business, political and personal relationships function for mutual benefit and blessing. The way to begin is to practice integrity in each aspect of our own lives, in matters small and great, so that we are not divided, but whole and consistent human beings. We can make our choices, one at a time, with the intent to bless - and in doing so, we can transform the world, one decision, one transaction, one thought at a time.

*A word about suffering: although I take Gladwell's point about suffering bearing many fruits of benefit in the world, it is important to understand that many of these benefits are apparent only after the crisis of suffering has passed. It is difficult to see blessings in the midst of suffering, and one who attempts to comfort the sufferer by pointing to the blessings inherent in it, is likely to fail - and to alienate the sufferer.

Friday, October 11, 2013

Actions > Words

No matter what words we use, our actions speak a deep and lasting message to those we meet. Ralph Waldo Emerson put it simply and eloquently:  
"What you do speaks so loudly, that it does not let me hear what you say." 

If our words and our actions are at variance, which do you suppose people will believe - and remember?

Author and doctor Don Miguel Ruiz wrote The Four Agreements. His website explains, "After exploring the human mind from a Toltec as well as scientific perspective, Don Miguel has combined old wisdom with modern insights and created a new message for all mankind, based in truth and common sense." 

The Four Agreements according to Don Miguel Ruiz are:

"1. Be Impeccable With Your Word
Speak with integrity. Say only what you mean. Avoid using the word to speak against yourself or to gossip about others. Use the power of your word in the direction of truth and love.

2. Don't Take Anything Personally
Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won't be the victim of needless suffering.

3. Don't Make Assumptions

Find the courage to ask questions and to express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama. With just this one agreement, you can completely transform your life.

4. Always Do Your Best

Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse and regret."

The path may be stony and hard this day, or smooth and even; we may be surrounded by friends, or pierced with weapons wielded by adversaries. Whatever this day holds, may wisdom inform our words and actions, that they may be of one spirit - that we may be a blessing to those we meet.

Thursday, October 10, 2013

Inspired to Give

1100 people gathered for the Ben Towne Foundation's BENefit 2013 (Image: Bryce Covey Photography)
Around here, autumn is the time when many charities host fundraisers. Gregg and I are always pleased to attend the Ben Towne Foundation's annual BENefit. We've had the privilege of being an active part of this event from its inception, and watching it grow each year lifts my heart like no other "gala" can.

Though the thing that drew us together with the Townes is the worst thing that has ever happened to us, our friendship goes far beyond that loss. It includes our sense of humor, commitment to family, a lot of coincidences, shared tastes and sensibilities, fierceness, passion and joie de vivre. It is pure pleasure to be counted among their friends and supporters, and to do all that we can to share their message and raise awareness of it.
Jeff & Carin Towne with Dr. Michael Jensen (Image: Bryce Covey Photography)
Though there are always some moments during the program that make me cry, most of my emotions at the BENefit are joyful, because the Ben Towne Foundation is getting the job done - making my dreams of a cure for pediatric cancer come true, in this time and place. Through their efforts, the pace is accelerating here in Seattle under the leadership of Dr. Mike Jensen and Dr. Rebecca Gardner (two special favorites of mine), among others. The Katie Gerstenberger Endowment for cancer research supports their laboratory.
Reba & Mary-Jane with me
Joining us at our table were my parents, brother Jim and sister-in-law Caroline, and our friends Reba, Bill, Mary-Jane and Brian. Let me give you a few statistics about our table: 60% of us had our only daughter die from pediatric cancer. Every single person at our table (100%) had suffered the loss of someone close to them as a result of pediatric cancer. For 20% of our table, it was their ONLY child (100% of the children in that family). All of us want to see this disease wiped out, with as few side effects, as quickly as possible. And we were in the right place to help the researches accomplish that.

The news is good, my friends: the first patient in the clinical trial of T-Cell therapy continues to enjoy remission, gained after only 9 days of treatment, with side effects of flu-like symptoms during that time. The next patient is ready to enroll, and it looks as if the clinical trial will soon be expanded to include a much broader range of ages - open for more patients to be treated and cured in this new, non-toxic way!

Did you know that it can cost 10 times more to treat a child with traditional chemotherapy than with T-Cell therapy - and surgery costs even more? The bill for Katie's care was in the neighborhood of a million dollars, for which we were (thank God) covered by medical insurance - but there are many whose finances are completely wiped out by such treatment, and without the promise of a cure!

Think of it this way: you could spend $350,000 for a patient to endure chemo, which can cause secondary cancers, organ damage, susceptibility to infections and reproductive problems - or $30,000 for a patient to have T-Cell therapy, with no long-term damage whatsoever, and continuing immune-system support for remission. Which would you choose for your child - or for yourself? What would you like to see become the "norm?"

Last week, I had the privilege and pleasure of attending an elegant "thank you" party for Seattle Children's Hospital's Circle of Care as the guest of one of our dear friends. The Circle of Care was conceived and founded by Scott and Laurie Oki, at Seattle Children's through their challenge grant of $1,000,000 in 1993; since that time, it has spread across the nation and has inspired $4.7 BILLION of giving to 25 children's hospitals in North America! This group is deeply appreciated by the hospital community. We enjoyed an inspiring evening of intimate conversations with top doctors and supporters who are equally committed to improving the health and quality of children's lives. I hope someday to be able to join the Circle of Care!

On this day - the very one on which Katie was admitted into the hospital in 2006 - people such as Katie, Carin and Jeff Towne, Dr. Jensen, the Okis and all of the members of the Circle of Care inspire me. Who (or what) inspires you to give?

A Magic Wand

"The day I acquired the habit of consciously pronouncing the words 'thank you,' I felt I had gained possession of a magic wand capable of transforming everything."  -Omraam Mikhael Aivanhov

Monday, October 7, 2013

The Gold Standard

"We make a living by what we get. We make a life by what we give." - Winston Churchill
Should our living and our life be different? How can we integrate them?

I grew up in a household which was supported by a family business. My father founded his own manufacturer's representative agency (Philip J. Boren, Inc.) when he was 40 years old. It was a huge leap of faith, and an adventure for him and our family.

As the business grew, so did our involvement with it. My father always discussed the events of his day with us over dinner. When his territory expanded to five states, he had to spend time away from home. This was the worst aspect of the job, for him; when the highway speed limit was lowered due to a national energy crisis, Dad decided to earn a pilot's license. Traveling to serve his clients was no longer a long haul; it was an opportunity to enjoy his hobby, while taking care of business - and arrive home in time for dinner with the family.
Dad drafted us to work for him at wholesale and retail trade shows, as well as on the road. He trained each one of his children in the art of sales, which he perceived as knowing your product, understanding and caring about your client's needs, and doing your best to explain to the buyer how your product could benefit their business. He actually used to pray silently, before making a presentation, that his client would be led to make the right decision to bless their business. He trusted that what was right for the client would in the end benefit our family's business. He cared about doing right, not just doing well - and he did both.

I am certain that the buyers he served felt his genuine caring and integrity, and he was very successful in sales and income, as well as his standing in the field. He won many sales awards and helped his customers - and the factories he represented - to prosper. His example made a lifelong impression on me of the highest aim in business: to bless everyone involved - not just to "make a living."

He faced industry-related problems, including disagreeable mandates from factories, demanding clients, service issues, rivalry, and even the occasional swindling by someone he had trusted. He held onto his integrity through it all, even if that integrity threatened to cut his income. He is still, at 86, the most honest person I have ever met.

Do we "make a living by what we get," or "by what we give?" What should our primary motivation be? What will lead to fulfillment and truly satisfying relationships over a lifetime? Will we be able to live with honor, according to the way we make our living? My father's example is the gold standard, for me - and I am thankful for it.

Monday, September 30, 2013

Inspired by Love and Service

"The beauty and charm of selfless love and service should not die away from the face of the earth. The world should know that a life of dedication is possible, that a life inspired by love and service to humanity is possible." - Sri Amritanandamayi Devi
This love and service are perfectly expressed in nursing care, whether it is a family member caring for a child who is sick with a virus, or a professional nurse with advanced training, serving in an intensive care unit. One of the most tender aspects of this love and service to humanity is seen in hospice nurses. 

I am privileged to know a hospice nurse who was trained in the ICU, and moved outward from there to care for people with life-limiting illness - those who choose to forego extraordinary means of prolonging their lives, preferring to focus on quality of life over quantity.

When we were faced with Katie's diagnosis of relapsed adrenocortical carcinoma (and with it, "terminal" cancer), Seattle Children's Hospital offered to call hospice and request care for Katie in our home. We accepted, in shock and gratitude. Amy came over a few days later with the hospice social worker, Dee; they explained everything and answered our questions.
In many parts of the country, hospice is not available for children. One of the reasons for this is the fact that - even among hospice professionals, where death is viewed as a natural part of life - the death of a child is a very hard thing to witness and accept. Fortunately for us, Amy knew that "The LORD cares deeply when his loved ones die" (Psalm 116: 15), and she came alongside to teach and help us, providing skilled hands to deliver that sacred care.

Over the next weeks, Katie's condition grew more life-limiting as the disease advanced in its unique and terrible way. During that time, Amy was always just a phone call - and a few minutes' drive - from us, all day and night, every day. She consulted by telephone, made home visits, provided comfort care and listened, in the most compassionate, understanding and devoted way. Katie was not happy to be in hospice care, and adopted what we call a "spicy" attitude to Amy (calling her "the quack" when she was out of earshot), but Amy understood this and loved her. 
We will be forever grateful to Amy for her support in some of the most tender and sacred moments of our daughter's life and death.
Amy writes a beautiful blog, and has just published an article in the American Journal of Nursing which I highly recommend; it can be found HERE. For more insight on this subject, check out this article in The Week magazine (an excerpt from Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. ©2013 by Katherine Anne Butler).
When one you love is sick or dying - whether you are a family member, friend or professional caregiver - your gifts of love and selfless service are essential. Your presence can bring peace and comfort - even if no cure is possible - and in so doing, you act as the very hands of the Holy One (Matt. 25: 36-40). It is a sacred vocation.

Thursday, September 26, 2013

The Sun Magazine | Dawn And Mary

My writing group gathered for dinner here the other night. The "Sh*tty First Draft Writing Group" has five members, each of whom has suffered the death of a child, each of whom has a strong character and a love for the written word. We meet to encourage one other to write - even what Ann Lamott calls "sh*tty first drafts" - or ideas that are still in our minds, or scrawls on scraps of paper...any writing, in any form, is welcome.
You might think this is a depressing group, but you would be mistaken in that assumption. Yes, someone occasionally cries, but there is far more laughter, lively discussion and deep listening. We share ideas, whatever we are working on and books we have read; we drink wine. We share our stories. We hold space for each other, talk about what it is really like to walk this earth without our child, in this new landscape which is continually surprising us. We remember our children, and we hold those memories together, with love.

One of our members, Robin (author of the blog Grief & Gratitude), is a wonderful resource - she has read all kinds of books and essays, and frequently shares them with us. I love that quality in her; she's a bit like a personal shopper for good writing on interesting topics. This week, she shared an essay by the writer Brian Doyle - an essay about two of the women who died in the shooting at Sandy Hook Elementary (there is a link to article in The Sun Magazine at the top of this post).

The entire essay is brief and beautiful, but the last paragraph in particular struck a chord in me:
"The next time someone says the word hero to you, you say this: There once were two women. One was named Dawn, and the other was named Mary. They both had two daughters. They both loved to kneel down to care for small beings. They leapt from their chairs and ran right at the boy with the rifle, and if we ever forget their names, if we ever forget the wind in that hallway, if we ever forget what they did, if we ever forget that there is something in us beyond sense and reason that snarls at death and runs roaring at it to defend children, if we ever forget that all children are our children, then we are fools who have allowed memory to be murdered too, and what good are we then? What good are we then?"
As I prepare to attend the Ben Towne Foundation's annual BENefit this weekend, I look forward to gathering with parents, researchers, oncologists, hospital staff who treated Katie, family and friends who know firsthand that "there is something in us beyond sense and reason that snarls at death and runs roaring at it to defend children..."

I will be grateful to be in such company. We will hear stories of the progress made this year, progress in research and the treatment of cancer through T-Cell therapy at Seattle Children's Research Institute's Jensen Lab (the first patient is in remission!). I will join hands with others who are snarling at death - at cancer - and together, we will run roaring at it to defend our children - all children - because, in fact, they are all our children. 

If you'd like to learn more or find a way to get involved, follow the links to the Ben Towne Foundation and Jensen Lab.

Monday, September 23, 2013

September (GOLD) News

NEW YORK TIMES BESTSELLER!!One of my favorite bloggers, Stephanie Nielson of "The NieNie Dialogues" and author of "Heaven is Here" has posted about Childhood Cancer. In that same posting, she has generously endorsed my book, "Because of Katie." Thank you, Stephanie!

Stephanie (also known by her readers as NieNie) survived an airplane crash which caused burns over more than 80% of her body. She writes a joyful, funny, sweet and real blog about her life as the mother of five children, spanning the years before and after the accident. The crash happened on the one-year anniversary of Katie's passing, so the date was very significant to me. Stephanie's journey - physical, emotional and spiritual - back from death continues to inspire me and thousands of others.

In case you didn't know, September is Pediatric Cancer Awareness Month (think "gold ribbon" when you see the pink one for breast cancer awareness). Many of our friends and acquaintances know about childhood cancer, and are committed to supporting research for better cures and treatments plans. They have started foundations, non-profit organizations, organized fundraisers, written articles, lobbied Congress, volunteered at camps and spoken freely about what they know - and what they wish they didn't know.

Clearly, it is neither wise nor acceptable to poison people - particularly sick people, especially growing children - in an attempt to cure them. But traditional chemotherapy and radiation are poison, and often lead to physical impairments like hearing loss, heart trouble and - if you can imagine the horror - secondary cancers. So a child who is cured in his youth may be diagnosed with a new cancer (not a relapse of the original disease, but an entirely new cancer) when he is older. After enduring the worst kind of sickness, this is cruel and unusual punishment.

We founded the Katie Gerstenberger Endowment for Cancer Research when Katie was in hospice care. She wanted us to direct the funds to cure cancers like the one she had (adrenocortical carcinoma). While childhood cancer is rare, adrenocortical carcinoma is extremely uncommon among that rarity, so we expanded the purpose of her endowment beyond that one form of the disease. To date, Katie's endowment is funded with nearly $193,000, and contributed $6,963 in this past year to the Ben Towne Center for Childhood Cancer Research at Seattle Children's Hospital. We are grateful to our family and friends who have helped to build this fund, as well as moved and relieved to see progress in the treatment and cure of cancer in these six short years since Katie passed away. With awareness, inspiration and financial support, it will come even faster - to children and adults who suffer from the many forms of cancer, and to those who suffer from the horrific, medieval torture-chamber-variety of treatments that have been all that is available to offer them, up until now.

To see the killer of my daughter (cancer) being brought to justice (wiped out) is profoundly gratifying to me mentally, emotionally and viscerally. If you are interested in joining this effort, please follow the links in the text in this posting to find out more.

To Dr. Michael Jensen and his colleagues at the Ben Towne Center for Childhood Cancer Research, to Carin and Jeff Towne (and everyone at the Ben Towne Foundation), to all who work tirelessly to make a better world for the sick, and for those who love them: you have my heartfelt thanks. And to Stephanie Nielson: thank you for caring about all of us who are touched by childhood cancer, and for using your blog to bless your readers!

Sunday, September 22, 2013

When One Door Closes

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." - Helen Keller

Saturday, September 14, 2013

Compassionate Action Starts with Seeing

"Compassionate action starts with seeing yourself 
when you start to make yourself right and 
when you start to make yourself wrong. 
At that point 
you could just contemplate the fact 
that there is a larger alternative 
to either of those, 
a more tender, 
shaky kind of place 
where you could live." - Pema Chödrön

Monday, September 9, 2013

Gratitude First

 "Happiness is not what makes us grateful. 
It is gratefulness that makes us happy."
- David Steindl-Rast, A Listening Heart

Friday, September 6, 2013

Light, Peace, Presence

"Enveloped in Your Light, may I be a beacon to those in search of Light. 
Sheltered in Your Peace, may I offer shelter to those in need of peace. 
Embraced by Your Presence, so may I be present to others." - Rabbi Rami Shapiro