Thursday, September 1, 2016

PAINS Update

Myra Christopher

Raising Pain Awareness

Penney Cowan has lived with chronic pain for most of her life and is the Founder of the American Chronic Pain Association. Her advocacy work is peppered with the creation of innovative projects and programs. Perhaps, one of the most powerful of her ideas was establishing September as Pain Awareness Month in 2001.  This September will mark the fifteenth anniversary of Pain Awareness Month. That it has endured over time is remarkable given all the other causes that vie for public attention. However, in my opinion, it has never reached its potential. 
It was my privilege to be one of those involved in establishing a Kansas City Affiliate of the Susan G. Komen Race for the Cure®; yesterday marked the 20th anniversary of the Kansas City Race. Each year, thousands of breast cancer survivors, their friends, family and others walk and run to raise public awareness and resources to support multiple organizations in our community that advocate for those diagnosed with breast cancer. Yesterday nearly ten thousand people participated in the Race in Kansas City, and there are now Komen Races in more than 140 communities across the country. Chronic pain is worthy of at least as much public attention as is breast cancer, and I think I could make an argument that it is worthy of even more attention.

It is estimated that one in eight women in the U.S. will be diagnosed with breast cancer in their lifetime.  One in three Americans live with chronic pain. So, let’s learn from Race for the Cure and other successful public education campaigns and help Penney Cowan make her vision a reality. It may not happen this year, but we all need to do everything we can to leverage the groundwork that has been laid by ACPA and other pain advocacy organizations and make as much noise as possible in September about chronic pain as a disease, the need to fully implement the National Pain Strategy Report, and sharing stories of those who live with chronic pain and have persevered in spite of it.

Pain Awareness Month in Kansas City 

PAINS-KC is a group of about fifty “Citizen/Leaders” who have met with leaders of PAINS on a monthly basis for more than three years. This year, they have taken the lead in developing a plan for September as Pain Awareness Month in Kansas City. We want to share just a couple of things they are doing in hopes that you will consider doing something similar in September or whenever you can.
PAINS Update has mentioned Dr. David Nagel’s new book, Needless Suffering: How Society Fails Those with Chronic Pain. We are delighted that Dr. Nagel will be in Kansas City on September 15 to speak about his experience in caring for those who live with chronic pain and why he wrote Needless Suffering. With support from two local health systems, a local church, and a few individuals, all those who attend this event will receive a free copy of Dr. Nagel’s book. They will also have the opportunity to view the art installation pictured here which is the work of Jacquelyn Sullivan-Gould, Director of Galleries and Professor of Fine Art at Michigan State University. Mrs. Sullivan-Gould was injured in a car accident her freshman year of college and has lived with chronic pain since then.  The life-sized bronze sculpture shown here is a self-image. 
A breakfast will be held the following day for physicians who care for those with chronic pain to meet Dr. Nagel and to discuss the National Pain Strategy Report and the recently published CDC Guideline for Opioid Prescribing at the Kauffman Foundation. In addition, PAINS is hosting a luncheon with leaders of local foundations to learn more about local and national efforts to establish that chronic pain is a disease and to improve chronic pain care, including a shift from a biomedical, opioid-based approach to a comprehensive chronic pain care model. 
We are also delighted that the Kansas City Library System has agreed to participate in September as Pain Awareness Month. Various branches will have displays that provide educational materials and also a short recommended “reading list,” including: 
    The Pain Chronicles by Melanie Thernstrom
    A Nationin Pain by Judy Foreman
    ThePainful Truth by Lynn Webster
    NeedlessSuffering by David Nagel
    LifeDisrupted by Laurie Edwards
   InsideChronic Pain by Lous Heshusius

We are also in conversation with our local Sickle Cell Advocacy Group to talk about how they can get involved and what PAINS can do to support their efforts. 

Power of One

On my way in to work this morning, I thought about what I can do personally. (I’m a big believer in “the power of one.”)  I decided that throughout September, I will make noise. Periodically, I plan to send emails to my personal contact list with what I call chronic pain “factoids,” e.g.,:·  
  •  Chronic pain is a disease.
  • Acute pain that goes untreated over a period of time changes the nervous system and can become chronic pain.
  • At least 1:3 Americans live with chronic pain.
  • 17% of children between 4-18 experience frequent or severe headaches including migraine.
  • It is estimated that approximately 30 million Americans live with “high impact chronic pain.”
  • Chronic pain is a leading cause of disability in America.
  • Chronic pain costs the U.S. between $565-630 billion annually.
  • Chronic pain care does NOT equal opioid therapy.
  • Comprehensive pain care improves outcomes, allows people to reclaim their lives, and saves money.

I don’t do Facebook and I don’t know how to Tweet, but I bet you do. If so, join me in stirring it up, and let’s get started on planning for Pain Awareness Month in September 2017. 

Labels: , , ,

Tuesday, May 17, 2016

A Selfish Request for Honest Conversations

Rev. Shanna Steitz 
On Monday of this last week, I had to fill out a medical advance directive for my husband, Ryan. He was in the hospital at North Kansas City, and they needed a document on file. We have documents at home, but the form was easiest because it was in front of us and immediate. I had to smile when I read the form and saw the small print at the bottom: “This document is provided as a service by the Center for Practical Bioethics.“ I smiled because I was headed to the Center’s annual dinner the very next night.  

If you aren’t familiar with the Center, it is a nonprofit, free-standing and independent organization nationally recognized for its work in practicalbioethics. For more than 30 years, the Center has helped patients and their families, healthcare professionals, policymakers, and corporate leaders grapple with difficult issues in healthcare and research involving patients. I am so proud that several members of our congregation are involved with this important organization:  Myra Christopher is the former President and CEO and still on the staff, Dr. Sandra Stites serves on the Board of Directors, and Rev. George Flanagan is a Center Fellow and formerly on the staff. I saw several other members and friends of our congregation in attendance.  

When I got home from the dinner, my 12-year old son Jacob was up waiting for me. He wanted to know about the evening. We discussed the Center and what our friends there did. It was an interesting we’ve had many times before, but it was especially unique given that his dad was spending a third night in the hospital. Ryan wasn’t dying, but Jake knows his parents’ wishes if we should. He has for years. I say this not to use our family as an example, but to remind you that it is my prayer that we will continue to be a congregation where we can be our most real selves. Where we can be truly authentic and have honest conversations. And where we can help one another to do and be that - Authentic. Real.

It is important that you have these honest conversations with your family members about what is important to you.  They can be hard talks, I know.  But it’s important for you and your family and it’s also important to me.  Because if you don’t have those exchanges now...I end up in the middle of those discussions with families later - during stress and crisis moments.  So, this is a selfish request (wink, smile).  It’s easier on me later if you do it now.  The Center has great resources to help begin those talks, and obviously we at Community have people who can help.

This is a first conversation for us around this... you and me.  I look forward to more of them.

May it be so. May it be so for us.

-- Rev. Shanna

P.S. My Ryan is fine. As I finish this on Friday, we are hopeful to go home tomorrow! 

Blog Editor’s Note

Rev. Shanna Steitz is the senior minister at Community Christian Church in Kansas City, Missouri. We welcome her contribution to our blog, which was originally published in the church’s May 8, 2016, newsletter under the title, “What I really want to say…”

Labels: , ,

Friday, May 6, 2016

Mothers’ Luscious Webs of Love - in Life and Death

John Carney
A Message for James IV

A 14-year old young man received the best Mother’s Day gift anyone could imagine this week. In the precious entanglements of family, this bright and budding gentleman heard his father pay tribute to a visionary woman, the boy’s grandmother, in a deeply touching display of affection before a crowded room. And how did that happen? All because the boy’s mother read a book about another son who shared stories with his mother in the final days of her life. Those conversations became the substance of a book, and the web of mothers’ love for their sons and sons for mothers took over.

The End of Your Life Book Club

Let me explain. On Tuesday, May 3, the Center for Practical Bioethics held its annual dinner.  Will Schwalbe, an author and editor, was invited to speak about his book, The End of Your Life Book Club. That’s the story about the son who shared intimate reflections with his mom during the final months of her life, inspired by the books they read together. They were both book lovers and their conversations about the meaning of those books deepened their love for each other and his depth of appreciation of her life. As they explored life in discussing the books, Will’s understanding of his mom’s courage and conviction about all sorts of things grew, expanding his appreciation for the causes she held dear and the virtues that guided her life. 

But the Mother’s Day gift that I’m focusing on is not the one Will exchanged with his mom in live conversation, but the one he gave all of us in writing the book. Here’s why.  At that same event, a young mother was seated near her son. He was attending only because his mother had read Will’s book. While reading it, she became convinced that her child needed to accompany her and her husband to the event because his father was going to be paying tribute to his grandmother during the evening. The mother of this young lad, in the reading of Will’s book, knew the importance of conversations that discussions about virtuous things and tributes can generate. And even if they don’t foment lots of talk from shy but handsome young men with braces, they can certainly imbue lasting memories for them.

You Listen!

When a tall, middle-aged man who happens to be your dad stands on a dais in front of 600 people saying tender things about his mother, midst tears and halting reflections interspersed with thoughtful composure mustering pauses, you listen! As a young man, you listen so you can ingest, long after the Andre’s chocolates dessert, the meaning of conviction, the importance of virtue, the purpose of family and the beliefs that drive hard work, unselfish philanthropy, thrift and generosity of spirit. You listen to your dad because your mom says it’s important, and you know that hearing him talk in front of a mass of people about his mom is important stuff, and because he is really talking to you as if there were no one else in the room. It’s that important.

I doubt seriously that Will Schwalbe ever imagined that his book about writings and conversations with his mother would create such a luscious web of Mother’s Day entanglement, but I’m glad it did. And I would venture to guess that his deceased mother’s spirit revels in it. Being part of it on Tuesday night gave tender affirmation to the work the Center -- our work in promoting intimate conversations about love and life and dying and saying “goodbye” and “I love you” and “remember this.”

Tell Them You Love Them

So this Mother’s Day, James, IV, tell your mother you love her and tell her thank you. And remember what your dad said about his mother and what courage and character it took to say it; not in front of 600 people, but in front of you. And tell him that you are proud of him. That’s another important lesson from Will’s book. Telling someone you are proud of him is as important as telling that person you love him  

I’ll be doing the same to my mom. I may get choked up, but hey, I saw a guy do that on Tuesday and he lived to tell about. Remember matter how tongue tied you get, your mom will still love you, and she’s just as likely to tell you that she’s proud of you too.

Thank you, Will, and thank you, Mary Anne, for the book. Thank you, Michele, for sharing it with your family in a way that its reach spreads the luscious web of Mother’s Day gifts to all of us. And thank you, James IV and Virginia, for the reminder that people who are often larger than life are still sons and mothers in the intricate and intimate expressions of family life.

John G. Carney is the president and CEO of the Center for Practical Bioethics.

Labels: , ,