Sunday, March 28, 2010

Addressing Helplessness: Intro to "Four Circles of Advocacy"

Being sick feels like being out of control. You are pushed in a wheelchair going at a speed and route not determined by you. You wait for other people to bring food, medicine, water, and, for some, even oxygen to breath. You are pulled, walked, held and rolled by people healthier and stronger than you. Some days this may feel like the vulnerability of childhood. On worse days, this may feel like your humanity has been replaced by a body made of meat for others to poke and prod. You look around at this life with pills, appointments, and less ability to "do" and wonder how you will find yourself in the rubble.

Loving someone who is sick brings with it a profound sense of powerlessness. You watch them wince in pain or curl up in their suffering and you have no remedy for the suffering. They disappear into their discomfort and you have lost sight of how to be with them, how to connect. Nurses and doctors come and go with news, medicines, and the potential for answers while you struggle to keep track of the often-changing picture of illness. You struggle to hold your life together in the "well-world" while giving all of yourself to the one in the "sick-world." As you straddle these two different landscapes, sometimes it feels you can never do enough, say the right thing or find the strength to sustain the complexity of this life. You look around at your life as a caregiver and wonder how you will find yourself in the illness tornado.

Being a professional healthcare provider means having tremendous responsibilities and staggering expectations from patients, families, and the healthcare system. You walk in the room and you have no way of knowing if you will be the rockstar, the villain or the saint. You have your fingers on the pulse of the most important, meaningful and emotional moments of people's lives. Sometimes you have concrete answers and sometimes only opinions. Almost always, the eyes in the room beg for hope. Sometimes, your hands are tied by things out of your control like insurance, protocols or politics. Sometimes, even when you have the best of intentions and all of the training in the world, things do not go as you would wish. You look around at your personal life and the lives of those you treat and wonder how you will find balance in the complexity of giving.

The healthcare field shifts and matures. Patients become more knowledgeable and empowered. Families and friends have more resources available to take on the emotional, practical and medical aspects of loving someone with illness. When we remove the bandages, empty the hands of cold cloths, and take off the white coats, we discover the humanity. We discover we all want the same things but we may be unsure of how to help each other in the process. No matter what role we play in the healthcare journey we all want acceptance, healing, and empowerment.

For the most part, we all must discover our personal path to acceptance, healing, and empowerment. One person may find acceptance by thoroughly exploring the medical research while others may find it through private meditation or another spiritual practice. For some, healing may only be defined by the physical result of a treatment while others may discover healing outside of the physical outcomes. Empowerment might be found through honing better communication between patient and caregiver while others may seek to take their voice of experience to a broader audience.

The guide I am writing will be penned for all of the players in our modern day healthcare drama who wish to be empowered or facilitate the empowerment of another. Through the Four Circles of Advocacy, a wide variety of personalities in various stages and stations will find philosophical and concrete ways to approach the type of advocacy that resonates with them the most.

The Four Circles of Advocacy are:

* Individual Advocacy

* System Advocacy

* Community Advocacy

* Sate/National Advocacy

Individual Advocacy takes place primarily in the privacy of the clinic, exam room or hospital. The foundation to individual advocacy is embracing and becoming confident in our ability to carry through on the Three Keys to Patient Advocacy: Knowledge, Awareness and Boundaries. We have to trust the patient's experience, think outside the box, and find ways to work together for the best healthcare experience possible.

System Advocacy may take place within exam rooms and in hospital beds but it also expands beyond the individual experience. System advocacy looks at trends within the healthcare system, the way a given healthcare system designs their policies, and what expectations the healthcare leadership sets up and establishes as their system's healthcare environment. For system advocates, this can range from examining patient waiting times to problem-solving for patient safety risks. While system advocacy directly impacts the individual patient, family and caregiver experience, this type of advocacy is broader and potentially effects the entire population participating in this health system's care.

Community Advocacy primarily reaches beyond the local healthcare systems to fill in the gaps where specific help is needed. This kind of advocacy might come in many forms but, in general, seeks to take an individual's insight and apply that understanding in a broader way through civic engagement. For many people, empowerment means reaching out to those who have further to go on the same learning curve they have just maneuvered past. Sometimes, engaging the community can be healing for those who did not have the outcome they hoped for and desire a way to improve experiences for others in the future. Community advocates might start a non-profit, hold fundraisers, or shed light on a health disparity previously not understood locally. While community advocacy, like system advocacy, will likely directly impact the family/caregiver experience, this type of advocacy reaches beyond healthcare itself and delves into questions about quality of life and the need for compassionate community participation in matters that will one day touch us all in some way.

State/National Advocacy has the potential for the most wide-spread impact. Some people feel most empowered when they can take an individual experience and use it to motivate change within our legislation, a major foundation, or the future of medical research. For many people, it is also the most overwhelming and intimidating form of advocacy. To become involved on a state or national level, advocates must have a certain level of knowledge about how the large organizations or governmental bodies are run and where a "civilian" may best find the optimal place to be heard. Like all of the circles of advocacy, state/national advocacy will directly impact individual experiences but, as we witnessed in March of 2010, reform is a slow and controversial landscape. This circle of advocacy is for those people who seek large change and are not afraid to find their way through the complicated maze of politics.

Advocacy is as unique as the people who practice it. There is no right way to find empowerment, just as there is no right way to discover acceptance and healing. We all must take the challenges that lay before us, as patient, family, or healthcare professional, and find our own meaning and purpose. This book is not a guide on choosing how to be an advocate. It is a doorway to discovering the options that lay before us as we face illness, yearn for change, and hope for a better tomorrow.

It is my hope that no matter which advocacy circle feels most empowering and meaningful to you, you will embrace it and allow yourself to feel satisfied in knowing you are a part of the medical revolution. So, to patients, families, and healthcare professionals, I wish you happy advocating. Let's explore the 4 Circles of Advocacy.

Saturday, March 27, 2010

A different type of "why me?"

Tomorrow is the 6th anniversary of my second transplant. Last year, I searched for survival statistics and learned that 23% of people getting second transplants live to see 5 years post. That number both terrified and inspired me. I wanted to do battle with that statistic, as irrational as that is. It literally took my breath away that I was in such a minority.

I suppose data searching is becoming a tradition on my anniversaries as I did it again this morning. I learned that while 1586 people will make it 5 years post after a first transplant, only 28 people will survive 5 years after a repeat transplant.

Tears sting my eyes with the shocking nature of these numbers. I am so lucky.

And yet I can't help but think back on all the friends I have loved and lost. In my gratitude I also am struck with the sentiment "why me?" Why should I be one of the 28? Why not Susy, Gabe, or Paul? Is this survivor's guilt? I am no more worthy.

Thank you universe, for letting me live beyond where the statistics stop counting. Thank you for letting me see another day.

Thank you donor family for your gift in your hour of grief and my 11th hour.

May I do this gift justice. Overwhelming. Just, overwhelming.

Completely humbled,

Wednesday, March 24, 2010

Changes, Pain and Growth

It's been almost a year since I've written on this blog. During that time, my life has been turned upside down. My marriage ended, my beautiful dog died, and I loved and lost a wonderful CF soulmate. I have explored grief on deep levels over the past year, and continue to do so.

The world soldiers on and I having been trying to keep up. Some days I am almost successful, many days I have fallen behind.

Spring is here and it lifts me up to see the sun and evidence of renewal. I am hopeful I will find acceptance and healing in all of 2009's losses. I am hopeful I will remember the lessons that this profound grief has been teaching me.

I feel a part of a new club, one that understands how oblivious the world can be to the devastation of grief. One that understands that a person's internal world is often compromised and shut down in order to "stay strong," push grief aside, and give the world what it asks for. I hope I will keep this perspective and remember to reach out my hand to others when they are in the darkness.

During my time of losses, I also had moments of creation. I have written my Patient Advocacy Handbook. This workbook on individual advocacy is on sale now in honor of upcoming advocacy and advance care planning events! Get them now before this offer expires (for real). The extended workbook on community, system and political advocacy is due out this summer.

I hope to visit this blog more and share my life with you again. I have missed the connection and exchange of ideas this blog allows. As you can understand, sometimes we need to retreat into our privacy. That's where I have been over the last year. I thank you for respecting that and am grateful for those who have been supportive. I am grateful to the universe for allowing me such depth of experience.

This Sunday, I celebrate 6 years post second transplant and the following Sunday makes 10 years since my first transplant. I am lucky, this I can never lose sight of. I am grateful.

With lost of love,
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