Download Advocacy Heals U Advocating 4 Advocates

In this…the only complete book that focuses on advocacy from the Event to
emotional healing…authors Joni Aldrich and Chris Jerry bring advocacy into the
much-needed spotlight through their combined twenty years of advocacy
experience, and the experience of guests on Advocacy Heals U, the radio program.
The Event can leave you devastated, but it also exposes the Need. The Call may lead
you to ask, “Who me?” Chris and Joni want you to get past the objections and
answer, “Why not me?” There has never been a better time to combine networking,
the ripple effect, and social media tactics to meet your advocacy objectives on a
local, national or international level. Even more important is the personal
fulfillment…Joni and Chris want you to realize that advocacy does heal U!
Endorsements
Advocacy Heals U helped me realize that I was a closet advocate. I lost my son
because he was born too soon. As a premature infant in 1977, his chances for a
full life were small compared to today. After his loss, many of my decisions and
actions were evidently due to my advocacy. It wasn’t until I read Advocacy
Heals U that I became aware of how much my own personal advocacy has
governed my life. Joni and Chris have given me a new and legitimized
understanding of my life. I see now that advocacy is a reaction to something,
and that advocacy is part of the healing process. It is the immune booster
against depression, despair and anger. I thank them for making me understand
the role that advocacy has played in my life.
~Chuck DiTrapano, RPh, President of RxTOOLKIT.com, Developer of Emily Jerry
eLearning
As a cancer survivor, I understand that the foundation of successful advocacy is
emotional health and wellbeing. As a national cancer advocacy program
director, I train and mentor advocates. This dual role gives me the unique
perspective of understanding that advocates require different guidelines for
different stages of their advocacy work. Advocacy Heals U acknowledges this
fact and creates the guidelines that balance the emotional needs of the
individual advocate with the practical guidelines that are valuable to all
advocates—from advocates that are just getting started to experienced
advocates. Whether an individual is seeking information on advocacy basics, or
seeking inspiration from other advocates, Advocacy Heals U will provide you
with answers. A common factor among survivors and caregivers is often feeling
alone. Through the personal stories shared in Advocacy Heals U, the reader will
understand that others have walked your path and are able to support you
through advocacy!
~Rose Gerber, Breast Cancer Survivor, Director of Communications and Patient
Advocacy, Community Oncology Alliance, Washington, D.C.
I started reading the chapters thinking I would finish the book the next day. I
was surprised to find myself at the last chapter! The words on each page spoke
to me loud and clear, as I reflected hearing similar stories in my healthcare
consulting travels across the country for over forty years deploying
performance improvement methods. I have heard these stories over and over,
but not so well articulated with passion from the advocate's perspective. I have
always heard from the healthcare prospective.
With the evolution of massive change in how we delivery healthcare and so
much more to learn, patient safety has to be a top priority. We never have the
time to practice for the potential medical errors and mistakes that could
happen. We seem to always be looking back and learning from mistakes that
have occurred. We have to be looking beyond the challenges of the present, and
envision what is possible in the future. Healthcare desperately needs to adopt
an innovative mindset to build systems of care that demand forcing functions
and electronic checklists to protect our healthcare workers in the care they
deliver to patients. Healthcare has a dominant design, the standard architecture
almost everyone follows, and it doesn’t always work. The time is now to adopt
designs that require radical change for safety. A "Spark of Possibility."
~Deborah Smith Ph.D., MBB, MCA, Jonah
Advocacy Heals U: 15 Keys to Fast Track Results and Emotional Fulfillment is
fundamentally different than any other advocacy book I’ve ever read in that it
puts the reader squarely into the middle of the storyline. So many times we see
caregivers—whether for wounded warriors, individuals with dementia, or any
other caregiving need—lose themselves completely in their grief over what has
happened to their loved one. By following the steps outlined in this book,
caregivers can lift themselves out of the “why me” mode that leaves them
depressed and weary, and become proactive and engaged advocates instead.
Understanding that your grief can be the fuel that will help others dealing with
similar situations can be tremendously empowering! Thank you for this very
important message!
~Laura J. Bauer, National Program Director, Operation Family Caregiver,
Rosalynn Carter Institute for Caregiving
Only decades ago, very few people survived cancer. Today, millions of men,
women and children triumph over the disease. However, while novel treatment
options have drastically changed the outcome and overall survival of patients, a
cancer diagnosis is still devastating. Research has shown that much-needed
mutual support not only improves a patient’s emotional and psychological
wellbeing, it also aids their overall recovery, and helps them gain confidence
and courage when they can speak openly about their feelings, fears, and wishes.
Advocacy Heals U is a deeply affecting and urgently needed book with an
excellent, thought-provoking, and highly readable message giving readers a
new perspective on the exciting and powerful gift of advocacy. It’s a
recommended read designed to help readers understand that a patient’s own
journey may directly lead to advocacy, in which their individual experience of
surviving cancer can help other patents confront the same challenge, so they
don’t have to face their disease alone.
~Peter Hofland, Ph.D., Publisher of ADC Review / Journal of Antibody-drug
Conjugates and co-host of The Onco’Zine Brief
Advocacy Heals U…how appropriate! One of the unique aspects of being a
caregiver is the innate ability to understand each other, even though every
caregiving journey is different. Yet the stark reality for every caregiver is that
each caregiving journey will end, and life is transformed in so many ways. What
will we do next?
Joni Aldrich and Chris Jerry (through their real-life caregiving journey’s and the
loss of their precious loved ones) learned that advocacy heals you, me, and
them. Through advocacy—where we share our innermost thoughts, feelings
and emotions—we spread light and hope to those who care for another, while
healing from our own journey through the role of advocate. Advocacy Heals U is
a must read for those who are a caregiver, who will be one in the future, or who
have been a caregiver in the past.
~Chris MacLellan, the Bow-Tie-Guy, Author, Caregiver Advocate, Blogger, Show
Host of Healing Ties
In our lives (often several times), we find ourselves confronting anxiety, fear,
pain, helplessness, and hopelessness. Experiencing these personally or on
behalf of someone we care about, education and life have not prepared us to
respond appropriately. Instead, we are encouraged to submit, withdraw, and
succumb. (Be strong. Keep your chin up.) Or we just simply shut down.
My brother was a nationally renowned legal scholar and long-time advocate for
human rights and social justice, but he became mute and passive after a Stage IV
cancer diagnosis. Internally, he was angry and frustrated, yet he was unable to
assume an advocacy role on his own behalf.
Recognizing the need to educate, mobilize, and help us overcome the silence,
Joni Aldrich and Chris Jerry provide us with the gift of an incredible guidebook
that helps us develop and utilize the necessary skills to advocate for ourselves, a
family member or loved one, a friend, or a cause. Advocacy Heals U provides the
inspiration to achieve personal fulfillment by making a difference. If you don't,
who will?
~Walter L. Shepherd, Retired Executive Director of North Carolina Advisory
Committee on Cancer Coordination & Control and Lifelong Advocate
Advocacy calls you! The journey is seldom easier than the actual Event.
Thankfully, Joni Aldrich and Chris Jerry heard our shouting! The need to heal
and help—brought forth through their experiences (and that of thousands of
others)—have compounded and formed Advocacy Heals U. As an international
advocate and cancer survivor, I personally feel the world has to read this
inspiring and informational book!
Joni, your relentless commitment and expertise, is only equaled by your
integrity! Thank you for this book.
~Johann Ilgenfritz, Cancer Survivor, Healthcare Advocate, Founder & CEO of UK
Health Radio and Health Triangle Magazine
As a Rabbi for many years, I have seen from my own experience and learning
how great a concept it is that Advocacy Heals U!
None of us can remain passive about what happens to our loved ones or
ourselves. I have known many cases when a doctor’s glum prognosis became a
death sentence. I am heartened by examples of friends who faced illness as a
challenge. My dear friend Isaac was determined to live each day to the fullest. At
the age of seventy, he climbed Mt. Kilimanjaro and ran a Marathon at the base of
Mt. Everest. When he did finally passed on, he had accomplished his dreams.
What seems to be a disaster at first glance may actually be a new open door.
There is an old tale of a Sage called Nahum. During his travel, it is said that he
was locked out of the town’s gates and had to sleep in the forest. The wind blew
out his campfire and a lion made off with his donkey. “This too is for good,” he
said. Upon awakening, he saw that thugs had overrun the town. He realized that
the locked gate had kept him away from disaster, and that the light from the
lamp and the donkey’s braying would have given him away to the brigands. He
would have been their victim, too. “This too is for good,” he said again. What
may seem like a disaster may be a step towards keeping us from a greater harm,
or may lead us forward to something amazing!
I believe that many will find their lives elevated and made so much better on
many levels because Joni Aldrich and Chris Jerry have chosen to expose the
healing in advocacy!
~Rabbi Dr. Norbert Weinberg, Advocate for the Survivors of the Holocaust in
Austria and Germany, Educator, and Author of Courage of the Spirit, an account
of his father’s struggle to survive Nazism and Communism
With compassion, honesty and courage, Joni Aldrich and Christopher Jerry tell
their tragic stories of loss, and how those experiences catapulted them into a
life of reaching out and serving others. Going from raw grief to finding the right
avenue to help others is not an easy process, but it is this journey that will bring
you inner healing. Yes, advocacy will help others and heal you. Helping frail
seniors and their caregivers has helped me heal from the saddest events in my
life—the suicides of both my husband and son. Read this book, and you will be
motivated to find your own path through advocacy to healing!
~Toula Wootan, Advocate, Author of Conversations on Caregiving; Love Stories
and Timeless Tips, Radio Host of Toula’s Tips for Caregivers
Life is difficult. Having an “interesting life” (a famous Chinese curse) requires a
willingness to risk—a marriage, children, job, relationships, etc. In a world of
inevitable change, what was once fulfilling often changes to grief when what
gave us joy is lost. It’s rarely a matter of IF we will suffer a loss, but rather
WHEN.
The question people face is what will they do when the theoretical becomes the
actual. For Joni and Chris, the answer is one that is healing and gives back
something positive to a world that gave them joy and meaning: Personal
Advocacy.
This book begins with the active participation of both authors in the type of
tragic events we all face. To their credit, they dealt with their grief by offering a
strategy for people experiencing significant losses. It’s an approach enabling the
re-entry into meaningful living while contributing to society. Bravo!
~Stan Goldberg, Ph.D., Writer, Speaker, Survivor, End-of-Life Expert, Author of I
Have Cancer; 48 Things to Do When You Hear Those Words
Joni Aldrich and Chris Jerry have produced a very well written book. It has an
easy-to-read format with content that is extremely important given today's
rapidly changing healthcare and medical landscape. The timing is perfect!
Advocacy Heals U is very informative, highly educational, and it is a must read
for everyone who participates in health care delivery. And especially consumers
who must become more self-responsible and advocates for their health on a
"care continuum" from birth to the last act in life.
~James (Jim) Wilds, MHA, Former, CEO HealthCare/Medical, Military Veteran,
Founder of the Nationally Recognized ProActive HealthCare USA Centers of
Excellence
As a two-time cancer survivor…once given fourteen days to live, in coma for a
year, and left with only one functioning lung…I am living proof that cancer
survivors who want to accomplish something amazing can have a new lease on
life. I personally decided to dedicate my life to advocate to provide other people
with something I never had…HOPE. There are so many amazing advocacy
groups out there like The Cancer Climber Association that focus on supporting
those touched by cancer to live an active, fun life.
So many people in the world are touched by cancer, and they do everything
they can to overcome the illness, but unfortunately they don’t win. Those who
have passed away—please know that you’ve been my main inspiration to
continue forward to help others realize how fragile life is, and to take advantage
of every moment we have on earth.
Thank you Joni Aldrich and Chris Jerry for advocating for advocates through
this amazing book—Advocacy Heals U—and celebrating those who go through
life’s adversities and are climbing high to help others!
~Sean Swarner, Top Eight Most Inspirational People of All Time, Inspirational
Speaker, First Cancer Survivor to Summit Everest, Hawaii Ironman, Expedition
to the South Pole, Author of Keep Climbing
I met Chris at a national meeting where he was presenting on patient safety and
medication errors. As a Pharmacy Technician, I feel we have a lot to give to the
pharmacy community. Currently, however, requirements of education,
registration and training are very different from state-to-state. It is my passion
to promote standardization to ensure that all Pharmacy Technicians have the
skill set and knowledge level to safely be a viable part of the pharmacy
environment. When I met Chris, I realized that—through this objective—I am
an advocate for positive change towards that goal.
This book may use Chris and Joni's stories as examples, but it truly teaches and
embraces all. I would recommend this as a number one read for anyone who
has a passion that they are dedicated to. This easy read will help you prioritize
your goals as an advocate, and make certain that you are reaching your full
potential!
~Diane Halvorson, RPh Tech, CPhT, N.D. State Board of Pharmacy Technician
Member
Advocacy Heals U is a welcome, comprehensive book that can benefit many
people confronting challenging situations with family members facing a
catastrophic illness. The book is a resourceful and important tool in areas
that…until now…have not been addressed.
As a PR professional working in the healthcare field, and as an individual who
has been in this difficult role a few times, I see the significant value of this
publication. Well done!
~Nancie Steinberg, SVP, Healthcare Media Specialist Hill + Knowlton Strategies
Copyright 2015 by Joni James Aldrich and Christopher Jerry
All rights reserved. No part of this book may be used or reproduced in any form or
by any means, or stored in a database or retrieval system without the prior written
permission of the author, except in the case of brief quotations embodied in critical
articles or reviews. Making copies of any part of this book for any purpose other
than your own personal use is a violation of United States copyright laws. Entering
any of the contents into a computer for mailing list or database purposes is strictly
prohibited unless written authorization is obtained from Cancer Lifeline
Publications.
Cover design: Motivational Press
Published by: Motivational Press
Author Photography by: Kathleen Fitzgerald
Printed in the United States of America
Dedicated to the advocates of the world who represent…
Advocates are normal people who achieve abnormal results through a passion that
burns from within. While others may travel through life on a buddy pass bypassing
human needs along the way, advocates focus on lending a hand in the darkness. Maybe
they are the caregiver for a beloved parent. Maybe they are proof positive that
someone can survive pancreatic cancer. Maybe they offer food to the hungry because
they were once hungry, or shelter in the cold because they were once homeless. Many
advocates are driven by a deep-seated need to honor and/or support loved ones, or to
pay it forward. Advocates are the catalyst for change in this world, and the voice for so
many that may not have a voice.
While every road to advocacy is somewhat different, there are similarities. It wasn’t
until Chris and I met face-to-face that we realized some amazing parallels between our
own personal experiences. My Gordon and Chris’s Emily both died in 2006. Chris and I
made major steps towards our advocacy mission in 2009. We were brought together in
2012 to advocate for advocates through Advocacy Heals U, the radio program, and
now through Advocacy Heals U, the book.
To all of the advocates of the world, Chris and I wish you Godspeed and peace through
this incredible journey—a passage filled with amazing self-realization and treasures
of soul currency. And healing…so very much healing.
Author’s Page:
Joni James Aldrich
Advocacy Heals U is the seventh book by Author, Speaker, Radio Host, and Health
Cause Advocate Joni Aldrich. Joni is the CEO of Cancer Lifeline Publications, and she
produces international radio programs that are available both live and on demand
(including Cancer S.O.S., Caregiving S.O.S. and Advocacy Heals U) on W4WN.com,
W4CS.com, iHeart.com, and UKHealthRadio.com. Joni advocates for patient
education, cancer families, caregiver rights, and cancer care legislation in honor of
her husband and mother who were both lost to cancer.
Until her 43-year-old husband was diagnosed with cancer, Joni didn’t know
anything about cancer or caregiving. After Gordon’s rare form of blood cancer
spread to his brain, he lost his struggle for life. As Joni set out to rebuild her life after
his death, she felt an overwhelming need to tell the story about what happened to
them. The hard lessons they experienced through the cancer steep learning curve
didn’t save Gordon, but Joni was determined to help others be empowered, alert and
involved patients and families to facilitate the best chance of survival for others who
hear the words “you have cancer”.
Other books by Joni Aldrich:
The Saving of Gordon: Lifelines to W-I-N Against Cancer; The Losing of Gordon: A
Beacon Through the Storm Called “Grief”; Connecting Through Compassion: Guidance
for Family and Friends of a Brain Cancer Patient; Understanding With Compassion:
Help for Loved Ones and Caregivers of a Brain Illness Patient
Christropher S. Jerry
Writer, Speaker, Radio Host, and Patient Safety Advocate Christopher Jerry is the
President and CEO of the Emily Jerry Foundation. This amazing organization was
founded to raise awareness about preventable medical errors with particular
emphasis on medication errors. After an intravenous compounding error by an
untrained pharmaceutical technician caused the tragic death of his daughter, Emily,
Chris dedicated his life to preventing other families from suffering through a similar
heartbreak. He is the co-host of Advocacy Heals U, the radio program, and is heavily
involved with the Patient Safety Movement Foundation.
The goal of The Emily Jerry Foundation—through the dedication and efforts of Chris
at medical facilities across the United States—is to help save lives through reducing
and eliminating the human error component of medicine. The general public is not
sufficiently aware of the fact that they are routinely put at risk within our nation’s
medical facilities. For example, pharmacy technicians (with different levels of
training and certification) are compounding virtually all intravenous medications
(IV medications) in most hospitals around the country. Another crisis in the
healthcare community that has not sufficiently been controlled is dangerous
hospital-acquired infections such as MRSA and C-Diff. The solution may be as simple
as adequate handwashing by staff members, yet the number of patients infected
yearly is continuing to grow.
The Basics of Advocacy:
The Event: A turning point in your life that forever changes your perspective. This
can be a diagnosis, a medical error, a natural disaster, and so forth. It’s not a tap on
your bumper; the Event is a head-on collision.
The Need: Through the Event, you learn something critical that other people need
to know, or that you need to act on. The Need will determine the “who, what, where,
when, how and why” of your advocacy.
The Call: No matter how many excuses you attempt to rationalize, the Call trumps
them all. The Call is a strong internal need to do something based on the Event and
the Need. Unfortunately, the Call doesn’t come with a set of detailed instructions.
The Advocacy: Your advocacy may be speaking up for yourself, for someone else, or
speaking out for a cause that you believe in based on the Need. In this world of open
borders, there has never been a better time to become an advocate. This book will
show you how—even without a set of detailed instructions.
The Benefits: Some benefits start immediately; just taking action on any level can
feel good and be personally rewarding. It feels great to wake up every day and help
others—to not just talk about it, but to actually make a difference.
No advocacy too large; no advocacy too small. Advocacy heals U!
Open-Ended Job Description of an Advocate
•Able to multitask many advocate-related jobs without saying “I cannot do that” or
“I have never done that before”.
• Develop one key objective (your mission statement), and find a way to make it
workable for all mankind.
•When you call the Boss, you answer. When you call Accounting, you answer. When
you call the mail clerk, you answer. In fact, your team photo is a Selfie!
•Practice long hours in front of the mirror, so that “timid” and “introvert” no longer
describe your personality.
•Reassure family and friends on a daily basis that advocacy is not “just a side effect
of the grieving process”.
(A few of) The Core Values of Advocacy
Core values remain constant and don’t change from time-to-time, circumstance-tocircumstance, or person-to-person.
1. The Advocate first. The physical, mental and emotional health and
wellbeing of the advocate always comes first. Without the right balance, you
will not be able to deliver an effective testimony to those who need it, or be a
good example for other advocates. Advocate by example.
2. Family. Consider the needs and viewpoint of your family and friends. They
may not be able to see advocacy from your perspective, but their life and
needs will not stop because of your personal mission. Do your best to protect
and support them.
3. The people who depend on your mission. Advocacy is a daily focus on
others who need your hard-earned wisdom, clearly delivered message, and
strong voice. Get involved with communities that are interwoven with your
purpose. Whether it's self-advocacy, patient advocacy, local, national or
worldwide advocacy, have faith that those who need your message will hear
your message.
Introduction
Advocacy Represents
“God promises a safe landing, but not a calm passage.” ~Bulgarian Proverb
Advocates represent through “ah ha” moments of clarity and even unimaginable loss—
realities we would never choose for ourselves. Imagine being the father of the most
beautiful little girl, and—even though she is fighting cancer—being told by the
doctors that a miracle has happened and the child will live a long life! Or the wife of
an amazing man who still has half of a life to live, and who has consistently loved her
through words and deeds for twenty years. When “in sickness and in health”
becomes reality, they fight tirelessly in the cancer trenches through every twist and
turn of treatment with one goal in mind—to save his life. Then an angel appears to
the father and the wife, and asks the unimaginable: “Choose the life of this loved one
in exchange for an amazing gift that will withstand the test of time, and your legacy
will fulfill a divine purpose of hope for many people. Your soul will eventually heal
through the gift, but your connection with your loved one (who you have steadfastly
fought to save) will be in spirit only—you cannot hold them or be with them in life.
Decide now.” To prevent the Event, we would unwaveringly beg the angel to spare
the life of the one that we love with a thousand promises to dedicate ourselves
tirelessly to any cause or purpose. Life just doesn’t work that way.
“He answered and said, ‘Whether he be a sinner or not, I know not: one thing I know,
that, though I was blind, now I see.’” ~John 9:25 (King James Version)
Advocates represent others (who still cannot see the danger ahead) to help them
before or after they fall victim to the same life-changing Event. For a college class
project, students were asked to find out why a brand of soap could claim in it’s
marketing to be “100% pure”. After much deliberation, the answer was that the
soap was 100% pure white. As we grow through life—not in years but through
experience and knowledge—we realize that we can only believe a small portion of
what we assume, hear and see. When you are in survival mode, it can be difficult to
deal with the most mundane realities—not to mention those that require serious
consideration. Perhaps you dived into a difficult caregiving situation without the
benefit of training, and every day means you helplessly watch the essence of your
beloved parent slowly drift away into the land of dementia. Maybe you are a cancer
survivor who was told thirty years ago to put your affairs in order because you
would not live out the month. And—through your refusal to accept your expiration
date—each breath offers renewed hope for the thousands who are diagnosed with
cancer every day. Or when you discover that the only way through the healthcare
maze is to be active and involved in decisions that you are not qualified to make.
While life is typically about putting challenges behind us, advocacy is about reliving
and retelling the Event—even when your heart is begging you to move on—so that
you can stop others who are walking along a similar ledge from stepping off the
same cliff.
“It is not what we intend but what we do that makes us useful. And, it is not a few faint
wishes but a lifelong struggle that makes us valiant.” ~Henry Ward Beecher
Advocacy represents the Call to build a monument to your loss founded on blood, sweat
and tears—not mortar and stone. The internal Call to do something will leave you
asking: “Who me?” We had a life before the Event; now everything is different.
Sometimes we feel that enough change is enough change without adding a layer of
complication over raw grief. Since the Event can never be changed or forgotten, our
reasoning is often driven by a need to make it count for something. When you agree
to step into advocacy, you will discover wisdom, courage and internal fortitude that
you never knew you had! You will also find resources, comfort and support, because
the task of getting through the red tape, and drilling down to the core Need can be
daunting. Never assume that advocacy is easy. A recent song lyric comes to mind:
“You can’t fix bullet holes with band-aids”. Even more frightening is the fact that it
seems like the only way the good guys win anymore is if the bad guys run out of
money. Advocates face these obstacles every day—and we have a fighting chance of
winning because right is on our side. Either way, success may not be what you
expect it to be. Your only expectations should be to reach the people you are
destined to reach, and achieve the goals you are destined to achieve. Does this seem
like a riddle? It is a riddle of life that you will never solve, but the answers are in
currency that will feed your soul.
“You are not alone. I hold you in my hands to protect you. Someday my plan for you
will become clear, and you will find peace. Until such time walk in faith.” ~Tom Krause
Advocacy represents healing. Faith is proof without evidence. The reality is that the
Event can critically wound your spirit. After you read about the extent of Chris’s
own devastating losses, we hope you will maintain faith even in your darkest
moment that there is a bigger plan and a living hope for you, too. When the path
ahead seems like it’s not just tough but impossible, you can keep going. Sadly, there
are people who do not make it through the storm called “Grief”. There was a
moment for Chris, too, when he felt that jumping off a parking deck was preferable
to living another moment in crisis. Healing begins with backing away from that
ledge. If you jump, the advocacy mission that you were destined to take will die, too.
When all you can see ahead is a dreadful ending, consider that advocacy represents
a new, meaningful beginning. Think of your family and what they have already been
through. Think of the people you are meant to help that will never hear your
testimony. If Chris had jumped that day, think of the waste to humanity. Have faith
that advocacy is a steadfast plan to find peace. Until you reach healing, remember:
You are not alone.
Chapter One: What Can One Person Do?
Five Objections That Will Keep You from the Power of One
Remember the philosophical riddle “If a tree falls in the forest and no one is around
to hear it, does it make a sound?” If you write the greatest book outlining your
advocacy cause or give your most impressive advocacy speech, and no one reads it
or hears it…are you still an advocate?
An interesting question, since the definition of an advocate is: “the act of pleading or
arguing in favor of something, such as a cause, idea, or policy.” I suppose that means
the answer to my riddle is “yes.” However, you are probably not reaching the full
potential of what one person can do. You may feel better for writing it down or
relaying the message to others, but wouldn’t it be much more satisfying to share
your hard-earned knowledge and passion with those who can benefit from it the
most? Chris and I want you to really focus on the power of one advocate.
Based on a need that you have been made aware of through an experience
(oftentimes a tragic one), you realize that something needs to be focused on, and
changes need to be implemented for the betterment of others. There is power in
numbers, and the more people who hear and retain your message, the greater your
measure of effectiveness.
Here are the core success meters of an advocate: 1) Does the message reach the
people it’s supposed to reach? At the risk of sending a mixed message, what if your
true mission is to reach only one person at just the right time? 2) Will those who
hear your mission retain the information and react the way you asked them to?
Those who hear your mission need to feel compelled to tell others, who will tell
others, and so forth and so on (the ripple effect). 3) Do your actions as an advocate
facilitate your own healing? Being an active part of the solution can begin to heal the
deep wounds that tragedy and loss can leave behind.
By realizing your power of one, you will become part of an elite group of change
agents and visionaries throughout world history. There have always been advocates
for change, although they may have gone under the title of missionaries, inventors,
politicians, protestors, and even some negative titles such as dictators or
warmongers. Some changes have been discreet and go almost unnoticed. Others are
profound. Either way, these changes fulfill a need that has been identified,
communicated, and acted on. John F. Kennedy spoke of the power of one in his
famous quote: “And so, my fellow Americans: Ask not what your country can do for
you. Ask what you can do for your country.”
Chapter Two: The Event
Outside of Structure and Control
The Event is a turning point in your life that forever changes your perceptions and
beliefs. It is a fork in the road that you never wanted, never expected, and will never
fully recover from. You’ll heal, but there will be scars. The blinders are off; you are
no longer unaware of a critical Need. Each person’s reaction and direction is
somewhat different, but the end result is often advocacy. If you have to ask, “What is
the Event?” then you haven’t experienced it. Not a single guest on Advocacy Heals U,
the radio show, has ever asked that question.
For Debbie Zelman, the Event was stage IV stomach cancer that was inoperable and
incurable. Debbie’s Dream Foundation is dedicated to raising awareness, funding
research, and offering support to stomach cancer patients. When Chris and I
interviewed her on Advocacy Heals U, Debbie told us: “My husband was upset when
I first started the foundation, because he thought I was going to die. He said, ‘Why
don’t you go travel the world, or do something else you would like to do.’ I said, ‘It
actually makes me stop thinking about me. It makes me think about other people,
and it gives me a purpose, and it gives me hope.’” Debbie also said that sometimes
she tells her friends: “If I was meant to do this, I could have just been led in this
direction without actually getting stomach cancer.” True, but Debbie’s personal
testimony has elevated her cause. Debbie’s Dream Foundation was just admitted to
the Dept. of Defense’s Peer Reviewed Cancer Research Program.
The Event can be combination of events (in my case beginning as far back as my
father’s death), each of which adds to the severity of the impact. With my husband,
Gordon, the first Event was his cancer diagnosis at 43-years-old. What followed was
one disappointment after another in medical protocol and the uncertainty of cancer
treatment. In real life terms, we were novices, unprepared to be active participants
in the cancer decision-making process. The final blow was Gordon’s metastatic brain
cancer diagnosis, full brain radiation, and the lack of information available to help
me understand the changes in my husband through the final weeks of his life.
For Chris, the Event began with his daughter’s cancer diagnosis. Emily’s treatment
worked…prayers were answered. After the preventable medical error took Emily’s
life, that fact made the Event even more tragic—not just for her family—also for the
doctor’s who had successfully treated her, and for those who were directly or
indirectly involved in the fatal pharmaceutical error. Nobody involved in Emily’s
story came away without pain. Events are life-experiences that you can’t put behind
you without action. In order to make any sense out of Emily’s short life, something
good had to evolve. Chris didn’t believe in “an eye for an eye”. He believed in hope.
Emily’s loss has facilitated an environment of positive change that will save some of
the hundreds of thousands of lives that are lost every year because of preventable
medical errors.
Chapter Three: The Call
A Foundation Paved with Need, Acted on Through Faith
People will look at you like you have two heads, and aren’t using either one of them.
“Hello, my name is Joni Aldrich. I took a walk on the beach eight years ago, and then
marched into Human Resources and gave up my high-paying job to advocate for
cancer families and caregivers.” If I’d had two heads, maybe one of them could have
talked some sense into the other one. As it was, thus ended my twenty-five year
career for corporate mega-companies. I never went back, and I never looked back.
That type of rashness was totally out of character for me. My entire life, I had been
“Ms. Dependable”. People wouldn’t ask my advice, because they knew I would give
them a no-nonsense answer. Where did that practical woman go? She was “called”,
but her practicality didn’t make it easy for the caller.
I like things spelled out for me. While the Need from Chris’s Event was clearly
defined, there were multiple, less-evident Needs that I recognized from the Event
that resulted in Gordon’s death. For the first quarter of his treatment, we thought
that all cancer treatment facilities could treat any type of cancer. In fact, that’s what
his oncologist said: “Any hospital in the country will use this standard protocol to
treat multiple myeloma.” That was a lie. Through his inexperience with Gordon’s
rare type of cancer, his oncologist—at one of the top teaching hospitals in the
country—failed to recognize that Gordon’s myeloma was aggressive, so standard
treatment wouldn’t work. After five wasted months, the cancer markers in Gordon’s
blood were three times worse than when he was diagnosed. This cancer treatment
team (that we innocently trusted) was setting Gordon up to die—not a sudden and
graphic preventable medical error, but a slow and painful death through medical
ignorance (by definition: uneducated, unaware, or uninformed).
Chris’s Call was an immediate sucker-punch out of nowhere with Emily’s sudden,
senseless death leaving very little doubt that something had to be done. Emily died
on March 1st, 2006. An investigation into her death was opened. None of that
mattered at that moment in time, because Emily was gone. It mattered later,
however, because advocacy needs direction. In order to speak out for a cause, you
have to completely understand the Need based on all of the contributing factors
surrounding the Event. Chris had a big advantage, because he knew how medical
facilities operate through his work in the medical devices industry. In Emily’s case,
multiple system failures resulted in a preventable medication compounding error
by an untrained pharmacy technician. Chris refused to sign the non-disclose
agreement offered by the hospital. Along with his wife, they began advocating for
Emily’s Law in August 2006, but the Emily Jerry Foundation didn’t become reality
until 2009. In the meantime, Chris and his wife plunged headlong into an emotional
spiral that only parents who have lost a child can truly understand.
Chapter Four: An Advocacy State-of-Mind
Advocacy embraces growth and healing, not a “slash and burn” mentality.
Why do humans bite when they’re in pain? The very fact that nobody—even your
spouse—can possibly understand what you’re feeling will make you even more
ferocious. You might think: “Don’t they know that I’m hurting?” “Don’t they realize
that my life has changed forever?” Maybe we could wear a neon sign that reacts like
a mood ring. Blue: No strong emotions; okay to approach. Red: Angry, MAY BITE;
stay away! Heaven forbid when two people meet who are both actively grieving!
When emotions collide, it can turn into the storm of the century. One heartbreaking
example is what the Jerry family went through after Emily died. Chris was collateral
damage, even though there was absolutely nothing he could have done to prevent
Emily’s death. His other children got caught in the storm, too; they lost their baby
sister, and their critical bond with their father and paternal family.
“Hurt people hurt people. That's how pain patterns gets passed on, generation after
generation after generation. Break the chain today. Meet anger with sympathy,
contempt with compassion, cruelty with kindness. Forgive and forget about finding
fault.” ~ Rabbi Yehuda Berg
Hurt people hurt people is truly a vicious cycle. Mistaken Need can leave you craving
a quick fix; sometimes only a “pound of flesh” can make you feel vindicated…and it
doesn’t even matter if it’s the right flesh. Becoming an advocate while you’re under
the influence of the wrong motivation and an unhealthy mindset can lead to
extended pain and suffering for people who had very little to do with the actual
Event. Hurt people can turn into vigilante advocates, and the resulting destruction
can be far-reaching and permanent.
Let’s give a name to the other side of anger that’s aggressive; the elephant in this
room is Blame. While anger is a healing part of the five stages of grief, we can
boomerang our pain off of other people through blame. Finding someone to blame
goes back to our childhood when we tattled on our sibling so we wouldn’t get into
trouble. Blame implies that someone or some group of people may have done
something intentionally to cause harm. That may be true, and a thorough
investigation needs to be conducted to find out. However, it’s sometimes a way to
divert our own founded or unfounded guilt. Whatever the reason, human reaction—
with blame as the conduit—can turn an already horrific situation into an impossible
crisis without hope of any positive change in flawed policies or procedures.
Chapter Five: What is my advocacy label, and who will I represent?
Don’t make restrictive assumptions here.
It’s normal to worry when you’re called to reinvent yourself for a cause. Imagine
being a fledgling author believing it’s their divine purpose to write a book. Hoping to
get some valuable insights on book publishing, she decided to attend a writer’s
conference. Instead of the encouragement she was seeking, Joni Aldrich discovered
that the publishing reps were cold and downright rude. An agent said: “You’re not
an author; you’re only a writer. You can’t call yourself an author until you’ve been
published.” I could have gone straight home. Instead, I went Joan of Arc on the entire
publishing industry. They didn’t define me. When the Need doesn’t go away, the Call
trumps everything.
The advocates that Chris and I have interviewed come in all ages, backgrounds, and
nationalities. Introverts, extroverts, A personalities, B personalities…it doesn’t
matter. Unlike other occupations, qualifications are an afterthought—life is the
essential element. How many careers start out with a negative (the Event) and turn
into “soul currency”? That doesn’t mean that—until you commit—you might not feel
guilty. I certainly did. As you question your feelings and acknowledge the opinions
of others, consider that the devil doesn’t want you to win the advocacy debate. The
first steps can be exciting, but tough. However, I have never thought: “I want to go
back to my old job!” Writing reports, going to meetings for hours on end…what
difference could that make in a hundred years? How can you ever go back to
ordinary when you have lived the absolutely extraordinary? Dedicating your life to
something that is bigger than yourself is not only “soul currency”—it’s soul
treasure!
Chris and I interviewed Dottie Pacharis, author of Mind on the Run; A Bipolar
Chronicle. Dottie’s son, Scotty, was diagnosed with bipolar disorder at twenty-seven,
and—despite successful treatment—he committed suicide. We discussed the stigma
of mental illness, and the impact on family and loved ones. Dottie says: “I wanted the
book to pay tribute to him (Scotty), and all he endured. I wanted to write it for other
families dealing with the same circumstances we coped with for more than thirteen
years. My hope was that these families would be as outraged at our failed mental
health care system as we were. My hope was they would join advocacy groups, and
get involved to change this country’s laws governing the treatment of mental
illness.”
Chapter Six: Patient Advocacy—The Danger of Healthcare Assumptions
Current Realities in the World of Patient Care
Writing this chapter is like storing an entire set of encyclopedias in one shoebox. It’s
packed with powerful advice that Chris and I can share (through our combined
twenty years of healthcare advocacy experience) that could possibly have helped
save Emily and Gordon. We want you to approach patient healthcare differently—
armed with knowledge that will empower you as a patient advocate—whether you
are the patient, or you are caring for a patient. (No, we aren’t focused on the pros
and cons of the Affordable Care Act. That would take another set of encyclopedias.)
This chapter will include: 1) exposing traditional assumptions about healthcare that
could threaten the safety of a patient; 2) critical pitfalls to be aware of and avoid as
you develop and interact with your healthcare team; 3) awareness of important
terms such as “over-diagnosis” that you may need to advocate to overcome; and 4)
the business versus personal perspective of healthcare provider and patient that can
help you objectively make advocacy decisions.
Biting Off Only the Low-Hanging Fruit
“There is nothing wrong with going after low hanging fruit. In fact, it’s a smart thing
to do, especially as a first step. The danger lies in only going after low hanging fruit. At
some point, you have to go after the more difficult goals; the fruit higher in the tree.”
~F. John Reh, Danger From Only Low Hanging Fruit
The Event may expose many needs—sometimes evidence-based, many other times
simply implied. It’s much harder to change a system…particularly one that’s driven
by profits. It’s much easier—as Chris’s wife exemplified—to blame and prosecute
one small cog in a big, ugly wheel—in this case the pharmacist. The hidden dirtylittle-secret that was hiding behind him was the hiring of an untrained pharmacy
technician. What if biting off the low-hanging fruit proves so much of a distraction
that the actual real problem is—once again—swept under the rug? How many more
victims will die? How many more victims will not necessarily die—but will have
near-death experiences? Eventually, you have to fix the system.
Chapter Seven: Personal Advocacy—The Life You Save May Be Your Own
Shifting the Priority Back to the Patient
“Never underestimate the capacity of another human being to have exactly the same
shortcomings you have.” ~Leigh Steinberg
Isn’t that a brilliant statement? Don’t we assume that—even though we know we
have moods and defects—other people (especially those with degrees, accolades
and titles in medical careers) will stay laser-focused on professional perfectionism?
Yet we all have constant distractions fueled by perpetual lack of time, issues ranging
from bankruptcy to “how am I going to get the kids to fourteen places at once”, and
emotional crises such as divorce or other loss. The pharmacist on duty when Emily’s
medication error occurred was called in unexpectedly for work that Sunday. Was he
distracted by the forfeit of a day off to accommodate his career? The pharmacy
technician who compounded Emily’s IV chemotherapy was preoccupied with her
wedding plans. Distractions can make us less cautious and more unaware, and they
are hard to control.
The best defense is a good offense. For preventable medical errors to be
preventable, they have to be recognized and even anticipated. Everyone involved in
patient care should expect the unexpected. When we’re caring for a patient, it
behooves us to set aside who has the degrees and who doesn’t. Once we realize that
we’re all focused on the same goal, we can work together as a team to advocate for
patient care. This takes focus and preparation.
Being an empowered patient or caregiver in the medical arena isn’t rocket science
either. What’s hard about asking the doctor if he or she has washed their hands? If
you don’t feel like asking, hold up a sign. The solutions are often simple, but they do
require that you be proactive, present, and inquisitive. You don’t have to look over
someone else’s shoulder all of the time. If you’re on stakeout at the hospital, and the
nurse on this shift is doing something a little different than the nurse on the
previous shift, it’s okay to question it—not confrontationally, but respectfully. Now,
you may have to insist on immediate attention if they are giving the patient
morphine, and they just had a shot of morphine in the past five minutes.
''Above all else, remember that your best defense against medical errors is your
willingness to speak up and ask questions.'' ~Jock Hoffman, Risk Management
Foundation Harvard Medical Institutions
Chapter Eight: Having the Right Dog in the Fight
Maintaining a consistent, productive, and responsible message.
The pharmacist who was incarcerated after Emily’s death didn’t make the policy; he
was following a policy decision that was made by administration. They may have
“assumed” that the pharmacy technicians would be properly trained, yet employees
with no job requirements other than a GED might be compounding your intravenous
medications right now. There are still five states in America that have zero
regulations for pharmaceutical technicians (Wisconsin, Michigan, Pennsylvania,
New York, and Hawaii—many high population areas). (The National Pharmacy
Technician Regulation Scorecards is available at www.emilyjerryfoundation.org.)
These drugs go directly into your veins so you may know immediately if they’re
wrong, although the result (thankfully) won’t always be death. So, what was likely
behind the decision to create and support this policy in hospitals? Money. We can
blame Benjamin. Without a lean budget, hospitals might have to close, and then they
wouldn’t be able to help sick people. Do the needs of the many outweigh the needs
of the few? The Jerry family drew the short straw, and it resulted in unimaginable
tragedy.
“While patients are theoretically given adequate information to help them decide
whether or not to be treated, they are given very little, if any, information to guide
their decision on where to be treated.” ~ Should Informed Consent for Cancer
Treatment Include a Discussion about Hospital Outcome Disparities? Authors: Nadine
Housri, Robert J. Weil, David I. Shalowitz, Leonidas G. Koniaris
This is the snake that bit Gordon. I’m reasonably sure that—when he recited the
Hippocratic oath—Gordon’s original oncologist intended to save cancer patients.
During Gordon’s first appointment, we asked about the Myeloma Institute. We
received a sarcastic, but firm “no need to go anywhere else” statement. As Gordon’s
cancer continued to get worse even after months of treatment, we often asked about
second opinions at other facilities. The reply was always the same: this is standard
treatment. We found out the hard way that there is no single “standard recipe” for
the treatment of any type of cancer. While a number of hospitals specialize in the
“cash cows” of lung, breast, prostate, and colon cancer, the rare cancers need
specialized treatment. I believe that the real reason Gordon wasn’t immediately
referred to another treatment facility was because hospital administrators had
instructed the oncologists to keep the dollars in-house. If patients go somewhere
else, the profits go with them. We can blame Benjamin again. Cancer killed Gordon,
but that oncologist shortened his life, and made it a more difficult, painful trip when
he blatantly said, “I’ve never seen anything good come out of Arkansas.”
Management, ego, or money…the result was the same.
Chapter Nine: The Learning Curve and How It Applies to Advocacy
Unless They Hear It, Understand It, Recall It, and Support It…It’s Just Words
I hate jigsaw puzzles. Why would anyone take a perfectly good picture and blow it
into a thousand pieces, and then tell me to put it back together? I view that as a total
waste of time. I’m a logical learner. Your communication to me has to have a clear
subject line, and has to have concise content for me to focus on it. You can lecture for
hours, but—if the pieces don’t fit in my mind—you’re rearranging the deckchairs on
the Titanic. Start your explanation at the beginning, and then get to the point
quickly. Otherwise, I’ll reject your message—no matter how much I personally like
and respect you. On the other hand, you want people like me on your side. I’m not
one to follow you blindly into battle, but—if I’m convinced that your cause is just—
I’ll defend it and support it with gusto.
Every person learns, listens, and reacts differently. Have you ever tried to learn
something simple, but failed to grasp the key concept? Or tried to tell someone
something that you thought was elementary, but they were confused by even the
most basic details? We’re left shaking our head and wondering what went wrong.
Your teaching techniques and the learning style of your listener may not have been
aligned. When you look out into an audience of expectant faces, consider that they’re
all going to hear your message the same, but interpret it differently. Success is giving
each person every opportunity you can to fully comprehend the details and
importance of your mission, including what it means to them in their daily lives, and
why they should pass along the information to those in their inner- and outernetwork of connections.
Verbal communication is one area where precious resources are critical to achieve
the right result from your listeners, readers, and visitors to your blog or Website. As
somewhat of an interloper into the complicated world of oncology, my verbal
message has to explain why I belong there to begin with. Chris had a somewhat
easier leap into the medical community, because he had already spent time there
professionally. Either way, why should busy doctors take time away from their
patients to either be a guest on my radio programs, or to fill a seat to hear Chris’s
presentation? People need confirmation that you have a right to their time and
attention. Your verbal message to them will verify with absolutely certainty that you
won’t squander that right, and that you belong in their setting.
Books are a great way to document many facts and viewpoints surrounding the
Event that may not be possible in an hour keynote or short discussion. A book can
be a written testimony to support your overall advocacy mission—a way to fill in
the blanks of your message to the world. Although you don’t need a special license
or diploma to write a book, if you feel that you need experienced help, you can hire a
ghostwriter to fast track the writing. There are writers who have taken fifteen to
twenty years to see their first book in print. That’s a long delay in getting your
message out to the people who need it.
Chapter Ten: A Comprehensive, Well-Rounded Message
Grade A Delivery and the Advocate’s Bully Defense
A frustrating bout of miscommunication with my tax specialist (right before the
deadline) reminded me how critical it is to correspond effectively about the
important details. It took three separate emails to get to a point that—if she had told
me right away what she did in the final message—would have saved us both time
and anxiety. As a result, she’s lost a good customer. When you rush and try to fast
forward through a conversation, you have to consider the permanent damage you
can do to a relationship. Life would be so much simpler if we could just read minds,
although that would be dangerous, too. She would not have wanted to know what I
was thinking.
Bring along translators and hearing aids (and maybe some anti-anxiety pills for
yourself), if you’re trying to get government-elected officials to understand. It was
amazing—no matter how many times the North Carolina Cancer Treatment Fairness
Act was debated last year on the House or Senate floor, even the politicians that
were cancer survivors didn’t fully comprehend this critical legislation. Of course,
they were getting their facts from many different sources, including one prominent
insurance carrier that opposed the bill, and therefore perpetuated continuous
confusion. If you get involved in the political arena, be prepared for verbal
challenges. Did you ever play that game where you whisper something into
someone's ear, and they whisper what you said into the next person’s ear, and so
on? The person at the end never had the right message. Imagine the impact if the
message was misinterpreted to begin with!
For the advocate, side effects of poor communication can result in the permanent
loss of a vital opportunity to win active support for your cause. While you can’t
necessarily win them all, you have to try. If the listening door is open, it behooves us
to use every tool in our toolbox to keep it open. You can’t force that moment of
clarity, and, when it comes, you want it crystal clear.
Dealing with opposition—“Oh no he didn’t…”
“He that wrestles with us strengthens our nerves and sharpens our skill. Our
antagonist is our helper.” ~Edmund Burke
Why would anyone heckle an advocate—a grieving wife, a devastated father, a
cancer survivor, and the like? You’re bearing your soul…talking about wounds that a
lesser mortal would bury deep inside in hopes of forgetting. Most people aren’t
willing to be jerks in front of a group of their peers. Nevertheless, you’ve put
yourself out there, and you’ll run into the occasional show-off or “I have nothing else
to do but abuse you” heckler. It can leave you somewhat stunned, deflated and
repeating: “I’m the good guy, I’m the good guy, I’m the good guy” to yourself in front
of a thousand people.
Chapter Eleven: Baby Steps or Deep End of the Pool
Transitioning from a Human Being into a Humane Being
“HOPE—a one syllable word that will keep you going when all of the other more
impressive words have failed to sustain you.” ~Joni Aldrich
People at my stage of life are generally looking forward to their last decade of work,
and then a nice long retirement someplace warm. In general, I have always done
what was expected of me. That’s not to say that I haven’t made mistakes in my life,
but I have always returned to the practical path. While I’ve never been one to take
baby steps, I’m not usually the one that dives into the deep end of the pool. Change
when you’ve already been forced into too much change just for the sake of change
doesn’t make much sense.
While Chris and I dived headfirst into our advocacy causes, you may have a different
comfort level. Decide if you want to advocate locally, nationally or internationally.
You might start out locally, and then expand. Are you planning on devoting time to
advocacy on a part- or full-time basis? Reassess regularly, and be honest—could you
be achieving more of your advocacy objectives? Adjust accordingly. There is no rule,
except for the guidance from your heart.
Web! Start with research on the Internet. If you aren’t an expert at technology, sit
down and explore with someone who has Web savvy. Explore every aspect of the
Need, because you never know where it might lead you. Can you find out how many
people are affected? Investigate other foundations that may already be set up for
similar causes. Follow through by making sure they’re legit by checking scam alerts.
Do they appear to be financially viable? What percentage of every dollar goes to the
charitable efforts? What are some of their accomplishments?
Instinct! Let your gut be your guide. There are so many aspects of our sixth sense
that we don’t fully understand, but we definitely should listen more often. I’ve talked
to so many people that say: “I should have listened—something was telling me to…”
Just like a divining rod, your instincts will pull you in the direction that you should
go. Instincts apply to the people you meet and align with, too. I was always told: “If it
looks like a duck, swims like a duck, and quacks like a duck, then it probably is a
duck.” Pay attention to your instincts. They don’t lie.
“Instinct is the nose of the mind.” ~Madame de Girardin
Chapter Twelve: The Big Three Networking Marvels
An Elevator Pitch, the Ripple Effect, and Synchronicity Phenomenon!
You are the rock in the advocacy ripple effect. When your message hits the ocean of
humanity, will it have a big impact that spreads and spreads—beyond what you
ever imagined? Whether you meet pedestrian or politician, consider that—when
you shake someone’s hand or greet them as a passing stranger—your time is limited
to move them past their illusion of “that has nothing to do with me” into a mindset
of “that has to change; I can help change it”. Every disconnect represents lost
opportunity. No pressure there.
Being sincere and passionate about your message isn’t enough. You need skills and
the ability to deliver your advocacy message repeatedly—with heart—to the right
people and audience. Who are the right people? Do they have two ears? (Shout out
to Brett Wilson, Walking Miracles. Brett started a conversation with a guy sitting
next to us in an airport restaurant, because he was wearing a non-profit T-shirt. It
worked—Brett got his business card. Persistence wins.)
Synchronicity: When it’s not really a coincidence.
Synchronicity is the synchronized occurrence or coincidence of events in life that
have special meaning. A 1920’s Swiss psychiatrist, Carl Jung, first defined the
concept. He believed that synchronicity is usually confirmation that whatever it is
you are engaged in at the moment is significant.
Many advocates who continually experience meaningful “coincidences” appreciate
them as a bit of personal guidance from…well, there are many philosophical
theories…but most relate them to divine intervention.
As you embark on your advocacy journey, who will help you along the way? Good
things come to people who do good things, and who are savvy enough to recognize
and take advantage of the people and resources that become available along the
way.
Chapter Thirteen: Advocacy Checkpoints
How Do You Define Success?
“Every artist dips his brush in his own soul, and paints his own nature into his
pictures.” ~Henry Ward Beecher
Success is different for every profession. An artist paints his or her vision with
emotion that they hope others will see through the canvas, while an electrician’s
handiwork must be precise enough to keep the house from burning down.
Advocates can be driven by emotions to take action, but they also need objectives
for their advocacy, and these feelings and goals must be orchestrated into a healthy
balance. What makes that hard? Your passion for your advocacy has to be
counterbalanced against the path that your mission is destined to take. For example,
a caregiver may or may not be able to save the patient no matter how hard they try.
That doesn’t make the caregiver a failure.
Have you ever considered how a doctor feels after the loss of a patient? Preserving
life and fighting death is a large part of a physician’s Hippocratic oath, but
occasionally losing a patient is unavoidable. Recently, a photograph of an upset
doctor crouched in sorrow went viral on social media. He was holding onto a wall as
he mourned the loss of a 19-year-old patient. It serves as a reminder that people
don’t become immune to loss—especially when human life is involved. It behooves
us—no matter what role we take in trying to help others—to not confuse loss and
grief with failure.
“So often, in medicine, we have to put our feelings and emotions in a box, lock it and
throw the key away. I believe at some point in our careers that box just becomes too
full, and then, in a single moment all of it will come crashing down…” ~Dr. Owen J.
Wiese
After his wife, Emily, was diagnosed with cancer, my dear friend Jack Scott reminded
me that: “You don’t know what you don’t know until you know it.” Helping others
who are blind to the pitfalls ahead before they step off the cliff, or holding their hand
along the way to ease their burdens…these are all staggering responsibilities. The
load can be physically, mentally and emotionally draining. Sooner or later, the box
will have to be opened. Success will not always be what you believe it should be.
People are still going to die from cancer. Medication errors are still going to happen.
Success in advocacy—perhaps even more than any other profession—means doing
the very best that you can, even if you fall short of the perceived goal…a lesson that
my parents amazingly drilled into my head every day of my childhood.
There will be days when you will doubt your mission and yourself. If you get stuck
in the quagmire that failure is not an option, this can lead you to put too much
pressure on yourself. Chris landed in the hospital with a bleeding ulcer.
Chapter Fourteen: Healing Through Advocacy
Advocacy puts the sense back in senseless...
Fire is one of the most destructive and dangerous forces on earth. Prescribed fires
are carefully supervised by professional fire teams to remove or reduce dense
vegetation that is fuel for wildfires. If left to Mother Nature, over time the forest
floor becomes dense with woody shrubs and hardwood. The risk of a dangerous,
uncontrolled wildfire will continue to build up—especially in hot, dry climates—
without positive human intervention.
Several years ago, the resort where I was living (which was surrounded by a wildlife
preserve) had a prescribed burn around the property. After the forest floor was
reduced to smoking charred ground, it was difficult to believe that anything good
could come from the devastation. Most of us were there for the natural beauty that
surrounded us, so the fire left us grieving the loss of the landscape that we had loved
and appreciated. The firefighters helped us understand the effect on the forest in the
short- and long-term. They explained that native species of grasses and forbs
couldn’t thrive with uncontrolled woody competition. Amazingly, these natural
plants are fire-adapted, often sprouting in just a matter of days! The new growth
provides excellent forage for many species of wildlife. The land—though it didn’t
look good—begins to heal almost immediately. Everything in life is a matter of
perspective.
Perspective is a natural (but not necessarily appreciated) by-product of the Event.
While we may be scorched and damaged on the inside, we can begin to mend—just
like the forest after a prescribed fire. It is a gradual process of adaptation. If we
nurture the natural courage that sustains us, we can begin to transform even the
most impossible of circumstances into survival.
“God grant me the serenity to accept the things I cannot change; courage to change
the things I can; and wisdom to know the difference. Living one day at a time; enjoying
one moment at a time; accepting hardships as the pathway to peace; taking, as He did,
this sinful world as it is, not as I would have it; trusting that He will make all things
right if I surrender to His will...” ~from The Serenity Prayer, one of the most
recognized prayers in the world.
The Event goes by many names such as diagnosis, grief, mental illness, natural
disasters, and even hate crimes, acts of terrorism, and the wrath of war. While the
Event is not a good thing, the nature of humanity is truly remarkable—often
through advocacy. Even after the most horrific tragedies, our spirit can and will
prevail. My mother always reassured me that “God does not make mistakes”. There
are times in our life when that profound statement is very hard to accept.
Chapter Fifteen: When is Our Advocacy Journey Over?
Compassion is engrained in advocates.
“The wound is the place where the Light enters you.” ~Rumi
I just heard a dead man give a Webinar from the U.K. Just as the worldwide Web has
redefined how we advocate, it has also redefined how we die. Fifty-one-year-old
marketing consultant Mike Seddon was recently told by doctors that he has
incurable cancer, and has only weeks to live. Through encouragement from his
friend, Dov Gordon, Mike gave one final Webinar in the hope that people who still
have the chance to make decisions about their life and business that truly matter
might benefit from his current perspective—that of a man whose time on earth is
ending. Mike will likely be gone before the first book is printed, but we hope it
comforts him to know that his words will live on through these final pages.
So, we dedicate this…the final chapter of the first book ever written on personal
advocacy…the Event, the Need, the Call…to Mike Seddon. Mike, you will always be
an inspiration!
Mike Seddon, about The Last Webinar:
“I’m very positive, very calm. I want to share with you the really valuable insights I
have now at this point in my life as I look back…I want you to learn from that, and
approach your business differently…approach it in a way that matters. Business isn’t
about making money…it’s about making a life with your business. We lose sight of the
really important stuff, and that really important stuff has come home to me like a
brick wall.”
What would you change about your life today, if you were told that you only had two
weeks to live? Hopefully (especially after reading this book), you would get a
qualified second, third and fourth medical opinion, but what if they all came back
without encouragement? You would realize that money doesn’t buy everything, and
that new car you have been saving up for wouldn’t be your dream anymore.
Suddenly, you would have to depend on your own ability to fight through the pain
and fear that nearly chokes you, as you realize that your wisdom of life will need to
be the expedited version. Whereas we can sometimes wish our lives away watching
the clock, when you are facing your own mortality, every second is an opportunity
to make precious memories—and even to make a difference in someone else’s life,
just as Mike is doing with his words.
Mike’s message was spot on—the world today needs his lesson about what truly
matters.
One last note from the authors, Joni Aldrich and Chris Jerry:
We want to thank you for reviewing a small portion of our truly incredible book. We
hope that it moves you, and gives you a new perspective of the exciting and
powerful gift that advocacy truly is!
If you would like to provide an endorsement, we would love to have it! Please write
a few sentences that you feel best describes the impact you believe Advocacy Heals
U: 15 Keys to Fast Track Results and Emotional Fulfillment will have on readers. Send
it to: [email protected].
And, please share the release later in 2015 of the first book on personal advocacy
through the Event, the Need, the Call, and the ripple effect will live through you. We
truly believe that—through the insights in this book—the lives of advocates and
their families will be changed forever.
Chris and I will also be booking speaking engagements for 2016. If you would like
more information, send a request to: [email protected]