1977, three bright students who graduated from Stanford University had an idea. Using a mimeograph machine as a printing press, they self-published a book. They set up on street corners and distributed the work by bicycle and backpacks.
She posted an incredibly moving post in September of this year about a letter it took her ten years to write.The Letter that took me ten years to write… In January 15, 2001 eleven-year-old Justin underwent a simple surgery to drain an ankle infection. He never awoke again and died the next day. Dale Ann and her family began asking questions immediately but they did not get answers. Instead they were treated to a wall of silence and began a lawsuit against the provider. Dale Ann endured the utter hell of a lawsuit just trying to find answers. And she did not stop there. She spent the next ten years doing advocacy work to help other families to prevent the kind abuse she and her family suffered.
So in Dale Ann’s painting she has two sons named Justin. To the left a young Justin sits. He holds a book open. It is the book of Justin, the book of his life. He is a happy child and frozen forever in his youth. In the center in front of Justin’s garden, Dale Ann sits. She holds a letter of apology that explains the events that led to Justin’s death.
To the far right is another Justin. This is the Justin of uncertainty; this is the Justin of what-ifs. Justin would be young man today. He may have looked something like this young man. This Justin holds a closed book and represents 10 years of advocacy and searching for a resolution.
The name of the book was Juggling for the Complete Klutz.
The book launched a publishing company named Klutz Press. I am sure you have seen Klutz Press books. They are very distinctive because the book is usually packaged with all the materials needed to complete an art project, science experiment or some type of athletic endeavor. Klutz Press has literally become a fixture in the world of book and toy stores selling millions of books since it was first created by three young people who thought anyone could be taught how to juggle.
They did that by embracing failure as a core design feature. If you have read the Klutz juggling book you know it is full of uplifting cartoons and funny comments about the challenges inherent in juggling. It tells you the many tricks of the trade and explains technique. Most importantly, the book is sold with three square soft juggling balls.
It comes with these three practice balls, because you will drop the ball.
You will drop the ball again and again as you learn to juggle. The balls are square so they will not roll. They are soft so they will not bounce. This book is a best seller because it embraced the lessons that failure taught.
I wish there was a klutz press book called “Juggling Sorrow: Medical Error, Harm and the Patient/Family Apology.” I know exactly which supplies I would package with that book. I would package envelopes, pens and stationary. And just like any other Klutz press title I would even pre-print the first few lines to make it easier. Each piece of paper would say
Dear _______,
I am so sorry. This is what happened:
________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Now, was that so hard? Was that something a grieving mother should wait 10 years for?
Do you know Dale Ann Micalizzi? She is an amazing woman and patient advocate. And this is her painting for The Walking Gallery: “The Tale of Two Justin’s”
She posted an incredibly moving post in September of this year about a letter it took her ten years to write.The Letter that took me ten years to write… In January 15, 2001 eleven-year-old Justin underwent a simple surgery to drain an ankle infection. He never awoke again and died the next day. Dale Ann and her family began asking questions immediately but they did not get answers. Instead they were treated to a wall of silence and began a lawsuit against the provider. Dale Ann endured the utter hell of a lawsuit just trying to find answers. And she did not stop there. She spent the next ten years doing advocacy work to help other families to prevent the kind abuse she and her family suffered.
Almost ten years after the fatal event that led to Justin’s death, someone reached out to share the true sequence events with Dale Ann. He said he could no longer live with himself knowing that she was still searching for answers. Justin had been overdosed with the wrong medication: Phenylephrine.
So in Dale Ann’s painting she has two sons named Justin. To the left a young Justin sits. He holds a book open. It is the book of Justin, the book of his life. He is a happy child and frozen forever in his youth. In the center in front of Justin’s garden, Dale Ann sits. She holds a letter of apology that explains the events that led to Justin’s death.
To the far right is another Justin. This is the Justin of uncertainty; this is the Justin of what-ifs. Justin would be young man today. He may have looked something like this young man. This Justin holds a closed book and represents 10 years of advocacy and searching for a resolution.
Here we reach the balance point of Dale Ann’s life with Justin.
She held him close and loved him dearly as a living child for a little over a decade. And for a decade more she held him close as a memory engulfed in a roaring chasm of questions.
Now the book is closed and there can be one Justin. And that is just and fair and right as Justin’s name itself.
But Dale Ann will continue her journey so others shall not suffer. She will work with providers to help them embrace the lessons of failure and share the healing power of knowledge with others.
What a concept Regina! The Klutz Press kit of medical error disclosure. Imagine if we could get The Joint Commission or IHI to endorse it and distribute it to every hospital CEO and Board with a pledge to use it every time a patient his harmed in their facility.
ReplyDeleteVery moving entry.