Political Advocacy for Beginners: Helpful Definitions

Coalition: Alliance of groups united for a cause. Some coalitions are independent; others who lobby Congress are affiliated with lobbying firms. (Examples: Coalition for Affordable and Reliable Health Care, End of Life Coalition, Pediatric Healthcare Coalition). Coalitions are required to disclose their members in their Lobbying Disclosure Act filings, per provisions in the Honest Leadership and Open Government Act.

Constituent: A resident of a district or member of a group represented by an elected official, One that authorizes another to act as a representative; a client.

Grassroots: Term used to describe action with a wide level of citizen engagement. Examples of grassroots advocacy include a union or association encouraging its members to contact a Member of Congress on a particular issue, typically with a particular policy objective in mind. Examples of other popular grassroots actions include letters to the editor, attendance at rallies, or signing petitions.

“Grassroots lobbyist”: This person is a “citizen lobbyist.” (See definition for “Grassroots,” above). Organizations such as the Sierra Club or the Heritage Foundation encourage their members to contact their Congressman on an issue, write letters to the editor, sign petitions, or attend rallies. These citizen lobbyists do not need to register under the federal Lobbying Disclosure Act if they only engage in grassroots activities. However, some states do require the disclosure of grassroots lobbying.

Lobbyist: Person who advocates on behalf of himself or a client to pass a law or to make changes to a bill being considered in a federal or state legislative body, or to help shape policy in the executive branch and its regulatory departments. Lobbyists can come from either the private sector or from a legislative affairs department in a federal agency. There are two types of lobbyists: grassroots and professional. The House and Senate includes in its "Guide to the Lobbying Disclosure Act" a definition of a lobbyist as: “any individual (1) who is either employed or retained by a client for financial or other compensation; (2) whose services include more than one lobbying contact; and (3) whose 'lobbying activities' constitute 20 percent or more of his or her services during a three-month period.” If this is the case, then this person must register as a lobbyist under the Lobbying Disclosure Act.

“Professional lobbyist”: According to the Lobbying Disclosure Act (LDA), this refers to a person who is compensated by an outside client or by his employer to lobby the government. This person typically engages in direct contact with elected officials.

Within this category there are two different types of lobbyists:

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In-House lobbyist: This person is employed by an organization to lobby on behalf of its own interests. Examples of organizations that would employ in-house lobbyists: AARP, National Rifle Association, U.S. Telecom Association.

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Outside (or contract) lobbyist: This person is employed by a lobbying or consulting firm and is retained by an outside organization to lobby on its behalf. Branches of Government: The Legislative Branch makes laws for State Government. It is made up of the Senate and the House of Representatives, which together are known as the General Assembly. The Legislature meets biennially and all members are elected for two-year terms. The Executive Branch of government enforces laws made by the legislature. The head of this branch is the Governor, who is elected every four years. Along with the Governor, the Executive Branch also includes the Lieutenant Governor, the Council of State, and many State agencies. The Judicial Branch interprets what our laws mean and makes decisions about the laws and those who break them. The Courts of the Judicial Branch are split into three divisions, the Appellate Division, the Superior Court Division, and the District Court Division The role of the United States Congress is explicitly defined and limited in the United States Constitution. The 10th ammendment states, "The powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved for the States respectively, or to the people." The Congress is comprised of two chambers: United States Senate United States House of Representatives

Political Advocacy for Beginners: Lumping

In order to represent we the people, the people have to be put into boxes. As lobbyists and politicians hammer out issues and how to turn them into policies, generalities must be made. People are put in to categories and decisions are made based on what seems best for that particular "demographic." This poses many challenges for those making the laws, not least of which is how to break down the demographics into a manageable number of boxes. With such a large number of people being represented, there are many,many boxes. This, however, does not change the fact that these boxes may be too large.

In the time I was observing the senate, I witnessed several glaring cases of what I have labeled as "lumping." One discussion involved the rights of pharmacists to dispense, or not dispense, needles. The argument was being debated about "needle users," referring to both illegal drug users and diabetics. We had been lumped by our need and our activity with no consideration as to the purpose of the needle use.

It is important for healthcare advocates to understand lumping. While it is understandable that there can not be boxes for every person and every circumstance, this method should be monitored and noted. While some of the issues facing those with mental illness and drug addition may have some overlap, do they have enough overlap to lump them together? From an experiential perspective, the answer is "no" but they are often seen as the same for the purpose of policy-making. Similarly, those with chronic illness are lumped together with geriatric individuals and those who are blind and deaf are lumped in with the chronically ill.

Looking at these demographics from a purely procedural perspective, these lumpings might make sense. Looking at the actual experience, however, there are some significant differences. These differences make this demographic lumping cause for concern. While, as a chronically ill person, I may have some of the same long-term needs as someone with advanced age, I also have a higher investment in recovery and being active. If policies are developed with geriatric people in mind, how much focus is going to be put into integrating into the work force and other avenues for productivity? We face different issues, have different goals, and need different kinds of care. Lumping can be dangerous for those with chronic illness living by the rules set for those with advanced age.

Lumping is an inevitable part of the political process. Lines have to be drawn somewhere to represent large groups of people. If those groups are not paying attention, this inevitability can negatively impact lives. It is essential that political activists keep an eye out for how the boxes are being organized. If you are about to be negatively impacted by lumping, that is the time to use your voice and help the policy-makers see why the categorization is inaccurate and detrimental to a whole group of individuals. While it may seem obvious to you, this distinction may not be obvious to them. Remember, they are seeing this from a policy perspective. It is your job to help them see it from the real-life perspective.

Time Out for Cuteness

The canine love of my life, Jenny, enjoys a day at Doggie Day Care. All together now: "Awwwww!"

"Battle Metaphor" repost with new ending

After the unexpected death of a friend of mine, my sister made the comment that I have known more people who have died than anyone, especially young people. That's an unfortunate side-effect of becoming a part of "the community." When you have the privilege of meeting so many amazing people living with chronic and serious illness, either online or in real life, you may have to find ways to say goodbye to them. Or, one day, they will say goodbye to you. It hurts and sometimes it feels like there is too much loss to bear. Even so, I wouldn't consider taking a step back from "my people" because these friendships are valuable, not to be outshone by the difficulty of death.

This morning I was reflecting on the language we use when talking to someone with illness or talking about them after they have died. One primary metaphor permeates: The Battle Metaphor. We provide encouragement to those we love with phrases like "You're strong, I know you can beat this" and "Keep on fighting, you have come too far to let (insert medical complication here) take you." Likewise, we use similar terminology after death by saying things like, "She lost her battle with..." or "she fought a good fight."

When I think back on my days on the ventilator or my days living with end stage chronic rejection, I try to imagine how I might "fight" in those circumstances. Nothing comes to mind. It is a one foot in front of the other place to be. The "fight" is literally in "being." There is no effort beyond that. I don't know how I could have changed what I was doing to honor a wish to fight. Nor do I think, had I found myself in a place where I was too tired/sick to continue, there would be anything wrong in "surrender," yet another battle metaphor and one that implies defeat.

A few days ago, I was talking to my chiropractor who I have known since before my first transplant (10 years ago). He was marveling at how long it had been since my second (6 years) and asking me if I attributed the better outcome of the second set to anything in particular. My answer was medical in nature: "I don't know but I would guess it has something to do with a better chromosomal match and perhaps the fact that I had a Nissen to prevent reflux. They have linked reflux and chronic rejection now." He looked a little disappointed. "But do you think it has anything to do with your attitude?" he said, "It could be your positive attitude."

I struggled to not sound upset. "I have known too many people who had better attitudes than me, worked harder than me, and wanted to live as much as me, and they are gone. I can't take any of the credit." He was quiet and my mind kept turning. "But," I realized, "While I don't think a positive attitude can reverse an inevitable, physical decline, I do think a negative attitude can accelerate, possibly even begin, a physical decline." Is that possible? Can the results of a person's attitude go one way and not the other?

The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I don't want to be called a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.

So what language could we use to replace this metaphor? First, we must begin by exploring the intention behind these words. When someone says to a patient "Don't give up!" what are they saying? Are they intending to say that if this person dies they will forever consider them a quitter? No, of course not. So what does someone mean when they say "Don't give up!"

I believe the deeper translation to this phrase is something along the lines of "please don't go!" or "I don't know what I would do without you!" They are imploring the patient to "fight" so that they do not have to suffer the loss. Other possible translations to similar battle metaphors might be:

"I'm scared!"

"I don't know how to handle this!"

"I don't know what to say!"

"I can't believe that you are so sick! I can't even believe this is happening!"

"I want you with me as long as possible!"

In addition, our culture caries many unspoken myths about the power of "letting go." If someone were to drop the battle metaphor and say something more authentic like "I want you here with me desperately because I love you so much but I know that may not be under your control. I will understand if the time comes for you to let go," our culture would likely judge and reject this sentiment. (That is, unless it is in the case of a person in hospice care and is surely days or hours from death. It is only at this time that we feel comfortable telling those we love that "it's ok to let go.") Just as we believe the power of positive thinking can alter a physical state, we fear that offering surrender will encourage and speed up a person's death. For this reason, we are trained to keep such "negative" thoughts to ourselves.

Crazy things do happen. People recover from things, sometimes to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Is it realistic to think people might be interested in learning more helpful ways to offer support? Is it justified that patients may wish for a different kind of encouragement or should we just be happy someone showed up at all?

Let me be clear: I am not trying to be critical of people who use The Battle Metaphor. In this culture, to have someone willing to offer support in any way, shape, or form is a huge gift. I have not written this to accuse anyone of doing something "wrong." I have written this in an effort to look at our common language under a microscope and ask if we have a better alternative. I would rather you use The Battle Metaphor than say nothing at all.

That said, it is my opinion that a more effective alternative to The Battle Metaphor is to use "I" statements instead of "You" statements. So, as an example, instead of saying "You can't let this illness beat you" you could say "I want you to recover from this illness so badly!" This is likely a more authentic approach and does not "ask" the patient to "do" anything. Some other examples of replacement I statements might be:

"I am here for you."

"I am thinking of you constantly."

"I miss you."

"I am so sad that you are sick. I wish I could fix it."

"I want the best for you."

This is a touchy subject. Some people don't want to be "censored" or made to feel like they can say something wrong. I don't blame them and this is not my intent. During times of illness, people can feel lost and confused about how to react, what to say, and how to offer support. It's my belief that this does not have to be a mystery. There are generalities that can be made when communicating about illness and grief. Just as those in the grief world advise people to avoid phrases like "He's in a better place now" or "It's for the best," patients can offer their perspective on the most helpful ways to be supportive in times of sickness and end of life.

Let's not question the intentions. Let's assume love is the motivation behind any of these interactions, Battle Metaphor or otherwise. We need not question the heart of the person speaking but we can seek to understand each other more. As we pull back the curtain, we can learn from each other and make our communications even more meaningful.

Yes, Your Voice Matters

Getting Going:

The first challenge to "getting going" as a political advocate is simple to identify. Even in thinking about political advocacy, the question "Where do I start?" can be enough to discourage a person from going any further. The good news is there is an easy answer to that big question.

Start anywhere.

First, get clear about what general or specific areas you are most interested in. For the purposes of this blog, we will assume health advocacy is at the top of the list. From there, your interests may become more specific and include topics like Medicare reform, Organ Donation policy, or research dollars for a specific illness. Whatever your area of concern, don't worry if you have no idea who to talk to about it. Just start anywhere.

1. If you don't already know, learn who represents you. Each state has their own website listing members of the general assembly and what areas of the state they represent. In the internet age, we have a great advantage to "starting anywhere." To find your state's website you can google "(Your) State Legislative Website Directory" or "(Your) State General Assembly)."

You can also start by visiting www.ncsl.org (National Conference of State Legislatures). There you will follow the "Resources and Directories" menu, follow the link to "State Legislative Websites" and click the page's link to this directory.

Once you find your way to your state's general assembly website, the formats may vary slightly state to state. Look for menus related to "Representation" and follow them to specific fields asking for your district, zip code or county. The websites will provide you with the names and contact information for House and Senate members meeting your criteria.

2. Contact your representative by dropping by, making an appointment for a face-to-face, calling or emailing. Speak to them or to their assistant. *Rest assured, Legislative Assistants are the gatekeepers to people and information. They can help you!*

3. Don't worry if the first person you contact is not interested in or involved in your particular area of concern. Remember the rule is Start Anywhere. When you reach the representative or, more likely, their assistant, tell them briefly about what areas of politics you hope/plan to become involved in or learn more about. Follow this short introduction with the question "Can you direct me to someone who is currently working on the issues I care about?" If they don't know, they will likely know someone who knows. It may be a phone tree, but you will get to the right person eventually.

Does My Visit/Call/Email Really Matter?

The short answer is : Yes! by law all visits, calls, and emails must be logged. Your input is counted.

The longer answer is : It Depends!

There are ways to more or less effective when reaching out to representatives. It is said:

1 face-to-face is worth 10 phone calls

1 phone call is worth 100 emails

It takes 7 contacts by a constituent before they become recognizable

The more personal you can make it, the more effective your advocacy will be. Get to know your representatives and let them get to know you. For maximum effectiveness, they need to know you by name.

The average state representative is considered to be part-time and makes very little income. At fist glance this may seem noble but, in practice, it dramatically narrows the demographic of individuals capable of taking on such a position. For most people working for under $15,000 a year (the salary quoted in May of 2010) with a wildly unpredictable schedule is simply not an option. This unusual circumstance primarily leaves room for individuals who are retired or independently wealthy to take on the role of house or senate representative.

These individuals often come from a background of privilege and many have lived within the world of politics since birth. While this demographic certainly warrants respect, it also warrants caution. For a person of color or a person living with chronic illness, it is fair to wonder if this demographic is equipped to speak on behalf of a world they likely do not know intimately. When you ask "Who represents me?" the answer is: You and people who have walked a similar road. We can not depend on those in office to comprehend the nuances of our experience. Our stories must be told. Our stories can influence political views. Our stories matter.

The bottom line, my friends, is we have a voice in the political arena. Once we are armed with all of the information we need and prepare ourselves to be effective in the political arenas, there is no reason why we can't be a part of the change! Political advocacy is waiting for you, if you so choose. We need your voice.

Calling All Healthcare Professional Bloggers!

I am writing a new book and am looking for stories told from all perspectives of the healthcare system.

I am looking for stories from healthcare professionals about a time when the healthcare system protocols provided a barrier for you to perform the best patient care. I want to know how it made you feel as a professional.

More generally, I am looking for any professional's account of the emotional experience of caring for sick and dying. As examples, I want to learn more about how you cope, what ticks you off and how you grieve.

I'm not looking for new pieces necessarily, I am hoping you will let me publish something from your blog alongside your blog address.

Please spread the word to the healthcare professional bloggers you know. Thanks!!

Pulling Back the Ropes: Humanizing Government

The first day I shadowed Jack, a North Carolina lobbyist, the itemized budget for the next year had just been released that very morning. This would inform the rest of our day.

Jack handed a copy to myself and my sidekick, an intern in his association. It was long, heavy, and looked like Greek to me. This wasn't surprising, however. I knew nothing about this governmental system of ours. I never paid attention in elementary school when we learned about "how a bill becomes a law" and, as an adult, it appeared far too complicated and corrupt for me to care. It seemed to me that my voice could never be heard over the loud chaos of our governmental machine.

This day, with Jack and his intern, I was in the belly of the beast. It was a crash course in how similar politics are to high school and how effective one citizen could actually be. As we crossed the grounds of the State Legislative Building and the nearby legislative office building for the first time that day, my eyes were confused.

There was what I expected; many older, Caucasian men in suits who looked important or, at least, like they had important places to go. I recognized one president of a major hospital and was told he was being accompanied by "his lobbyist." While there were many of the characters I expected to find, there were also large groups that stood out. The three most distinctive were the large clusters of Harley guys decked out in full motorcycle gear, the Arts Council group respectfully linked by a large yellow button stuck to their shirts, and the women in Dr. Seuss clothes beside those with children's books taped to their heads.

At first, these sights were disorienting enough that I assumed these people were part of a play downtown, got lost and ended up in the wrong place. Of course, this was not true. It was my first taste of what Jack called "the theater" of government.

For the rest of the day, I would have the pleasure of meeting and talking to some of these characters. All of them were there to address a particular line item or two in the newly released budget. These were community lobbyists who had a mission and sought out the appropriate representatives to plead their case. Some groups were highly organized, with full color flyers, statistics, and appointments with many representatives throughout the day. Others relied on existing relationships with certain politicians and were happy to wait around all day to get a few minutes of face time. Some relied mostly on the costume to get them in the door.

Two things became clear to me on this day:

1. We, the people, do have a voice. We just have to learn how, where, and when to use it. (That's what I hope my book will help you do!)

2. For every line item on the budget, there will be individuals, groups and lobbyists with a convincing argument for why that money should be appropriated differently, not cut, or increased.

The state budget I saw had numbers so long I got dizzy. With nearly twenty billion dollars on the table, it would seem like there should be plenty to go around. Hardly. For every program that is trimmed, there are real people effected and fighting to maintain their jobs and the stability of their lives. For every argument for or against a budget line item, there are compelling personal stories, ethical considerations, and financial implications. The bottom line is, there is no easy answer. Ever.

The theme of many of my talks and approaches to healthcare revolves around this concept of "pulling back the curtain." This calls for humanizing the experience in order to understand the true complexities of human emotion and systematic limitations involved. If we want to move forward, we can not remain still, standing in one spot waiting for others to fix the problems to meet our particular satisfaction. We must be willing to levitate and look down at the entire picture from all angles. The purpose of this, of course, is to find ways to identify the flaws and capitalize on the opportunities while working together, as human beings who happen to be patients/family members/professionals, for the best experience possible.

What I was shocked to discover on the grounds of the legislative building is that this goal of "pulling back the curtain" is not at all different for politics. The flaws in our governmental systems are not hard to see. Corruption, self-interest, and the business of political "scratch my back now and I'll scratch yours later," is as obvious as the nose on your face. What also becomes obvious, however, is the genuine grey area of so many of the issues at hand.

One small example of a grey issue I saw that day was a bill trying to be passed that said a person had the right to use deadly force if a threatening stranger was on their property. This seems logical, we all should have the right to feel safe in our home. What this bill did not include or foresee was the risk it posed to some "strangers" who also have the right to be safe. Social workers and child psychologists, for example, are sometimes mandated to visit a home unannounced as a part of child abuse investigations. If a home owner perceives this professional may take their child from the home, they then pose a "threat." Does this give them the right to use deadly force on this professional? One would hope the state would say "no" but at the time of my visit, they had not recognized this as a problem with the bill.

For those who choose to become politically involved, frustration awaits. It is a messy process. However, a part of that mess is the need for, and lack of, first person accounts. The patient voice is needed. No, it is required. First, we have to understand the system and where our voices can be heard. Once we have done that, nothing should hold us back from telling our story. Our stories MUST be told. Let's pull back the big red ropes and walk into our own government buildings ready to be an essential part of the process. Let's make a difference when and where we can. Let's humanize government, shall we?

Time Out for a Longer Look at the "Battle" Metaphor

After the unexpected death of a friend of mine, my sister made the comment that I have known more people who have died than anyone, especially young people. That's an unfortunate side-effect of becoming a part of "the community." When you have the privilege of meeting so many amazing people living with chronic and serious illness, either online or in real life, you may have to find ways to say goodbye to them. Or, one day, they will say goodbye to you. It hurts and sometimes it feels like there is too much loss to bear. Even so, I wouldn't consider taking a step back from "my people" because these friendships are valuable, not to be outshone by the difficulty of death.

This morning I was reflecting on the language we use when talking to someone with illness or talking about them after they have died. One primary metaphor permeates: The Battle Metaphor. We provide encouragement to those we love with phrases like "You're strong, I know you can beat this" and "Keep on fighting, you have come too far to let (insert medical complication here) take you." Likewise, we use similar terminology after death by saying things like, "She lost her battle with..." or "she fought a good fight."

When I think back on my days on the ventilator or my days living with end stage chronic rejection, I try to imagine how I might "fight" in those circumstances. Nothing comes to mind. It is a one foot in front of the other place to be. The "fight" is literally in "being." There is no effort beyond that. I don't know how I could have changed what I was doing to honor a wish to fight. Nor do I think, had I found myself in a place where I was too tired/sick to continue, there would be anything wrong in "surrender," yet another battle metaphor and one that implies defeat.

A few days ago, I was talking to my chiropractor who I have known since before my first transplant (10 years ago). He was marveling at how long it had been since my second (6 years) and asking me if I attributed the better outcome of the second set to anything in particular. My answer was medical in nature: "I don't know but I would guess it has something to do with a better chromosomal match and perhaps the fact that I had a Nissen to prevent reflux. They have linked reflux and chronic rejection now." He looked a little disappointed. "But do you think it has anything to do with your attitude?" he said, "It could be your positive attitude."

I struggled to not sound upset. "I have known too many people who had better attitudes than me, worked harder than me, and wanted to live as much as me, and they are gone. I can't take any of the credit." He was quiet and my mind kept turning. "But," I realized, "While I don't think a positive attitude can reverse an inevitable, physical decline, I do think a negative attitude can accelerate, possibly even begin, a physical decline." Is that possible? Can the results of a person's attitude go one way and not the other?

The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I am not a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.

So what language could we use to replace this metaphor? First, we must begin by exploring the intention behind these words. When someone says to a patient "Don't give up!" what are they saying? Are they intending to say that if this person dies they will forever consider them a quitter? No, of course not. So what does someone mean when they say "Don't give up!"

I believe the deeper translation to this phrase is something along the lines of "please don't go!" or "I don't know what I would do without you!" They are imploring the patient to "fight" so that they do not have to suffer the loss. Other possible translations to similar battle metaphors might be:

"I'm scared!"

"I don't know how to handle this!"

"I don't know what to say!"

"I can't believe that you are so sick! I can't even believe this is happening!"

"I want you with me as long as possible!"

In addition, our culture caries many unspoken myths about the power of "letting go." If someone were to drop the battle metaphor and say something more authentic like "I want you here with me desperately because I love you so much but I know that may not be under your control. I will understand if the time comes for you to let go," our culture would likely judge and reject this sentiment. (That is, unless it is in the case of a person in hospice care and is surely days or hours from death. It is only at this time that we feel comfortable telling those we love that "it's ok to let go.") Just as we believe the power of positive thinking can alter a physical state, we fear that offering surrender will encourage and speed up a person's death. For this reason, we are trained to keep such "negative" thoughts to ourselves.

Crazy things do happen. People recover from things to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Can we find a new metaphor?

I have some thoughts but none worthy of proposing publicly yet. I will keep thinking but in the meantime, would love to hear your thoughts!

Little Patient in a Big Medical World

It was one of my first opportunities to talk to healthcare professionals. It was Medical Grand Rounds at a major hospital. I had been invited with a chaplain friend via an official letter. We had to submit our CV for approval. (First, I had to look up "CV" on google because I didn't know what that was.) This was a big deal and I felt important, nervous, intimidated.

I prepared my remarks for the upcoming talk carefully. I was ready to talk about life as a patient and the importance of my relationship with my healthcare providers. I was ready to talk about grief and coming to the end of life. I was confident in my content.

My chaplain friend, Heidi, and I had been invited to a Residents' Lunch prior to the Grand Rounds. This is where we would meet face to face with the resident who had invited us to speak. We would also have an hour to chat with the internal medicine residents about whatever was on their minds.

When we sat at the head of the table, there were about 15 pairs of eyes on us. The Chief Resident, the man who invited us there, stood for introductions. He began with Heidi. Her introduction was long, detailed, and glowing. He went all the way back to her high school and undergraduate days, detailing her degrees and hobbies. He gave a lengthy description of her work within the hospital and what value she lends. It was an impressive and generous introduction, clearly showing he had done his "homework."

When it came time for my introduction, he gestured at me and said "And this is Tiffany Christensen." With that, he sat down. I was stunned and a bit stung. He had my CV information and he knew my patient background. This was not a case of not knowing, it was a case of not caring. I felt like a lump of meat.

Through the rest of the lunch, all questions were directed at Heidi. I did my best to put on a smile, shrug off what had just transpired, and participate in the conversation. Each time I chimed in, however, my comments were met with dead air or another remark directed at Heidi.

When it was time to present at Grand Rounds, it was difficult to keep my head up when I walked into the auditorium. My competitive spirit is all that kept me going. I had an even stronger drive to show professionals the value of the patient voice.

When Heidi and I finished our presentations, all of the comments and questions were directed at me. One older physician remarked that he usually fell asleep during grand rounds and this was the first one in a long time that kept him on the edge of his seat. I was later met with many wonderful comments in private. Grand Rounds had been a success. I had weathered the storm of one professional's bias and proven to myself that my voice, my experience, did have some relevance to practicing professionals.

Today, I make my living speaking to consumers and professionals about various aspects of healthcare. Every time I stand before a group of healthcare professionals, I am met with the same insecurities I felt that day at Grand Rounds. My lack of medical training, my lack of a degree of any kind, comes up on a fairly regular basis. I dread the pre-presentation chats because invariably someone will ask my background and I am met with the same look in the eye as that chief resident. It can be a painful time before I make my presentation because my value is under scrutiny.

I am just a little patient in a big medical world. Trying to be heard. Trying to speak up for what I see on a personal and systematic level. I am just a little patient looking up at the towering healthcare system and hoping to make a dent. Each and every time I stand in front of a room of doctors, nurses and other healthcare providers, I wonder if I will win them over or fall flat on my face. Usually I win them over. Sometimes, I fall.

There are lots of us. Patients with rich insights stemming from arduous experiences. We have so much to say and so much to teach. There are still professionals who resist us. There are many who look for ways to integrate our messages into their practice. There is a new movement called Participatory Medicine. Some of us, patients and professionals, are ready to partner and meet each other as equals.

While I have to battle my nerves and insecurities in my work, professionals may face other challenges. I recently gave a presentation beside a physician currently leading the way in Participatory Medicine. An audience member asked what he would say to one of his colleagues who resisted the idea of partnering with patients. His response impressed me.

He said, "Every day I go to work, I have to battle my own ego. I know things would happen faster if we did them my way. I could plan my schedule if I didn't have to take other opinions into account. But I have made a choice to practice a different way. I have to remind myself that this is not about me, my schedule, my way. This is about the patient. So every day, I choose to put aside my ego and listen."

We are getting there. This healthcare culture is changing. Patients and professionals are working through their respected challenges and finding a way to the middle. I am so grateful to be a part of this exciting time in the evolution and revolution of healthcare!

Top 10 Things I've Learned after having Double Doubles

I leave today for Indianapolis to speak about lung transplant to cf social workers and registered dietitians. The diet part is easy -- TPN is yummy! (just kidding) :)

This is a handout I am using at the conference. Just thought I'd share....

April is Donation Awareness month! Are you a registered donor? Why not?

In the spirit of a beautiful woman, Eva:

Love to my donors and their families.

Love to my transplant buddies who have said goodbye way too soon.

Love to those who wait for life to begin anew with a donor heart, liver, lungs, kidney....

Love to those who have transplanted organs who still walk this journey of balance, strength and carpe diem.

Love to those professionals and family members that make the transplant journey an option and then, a reality.

Top 10 Things I've Learned after having Double Doubles

1. One of the most difficult circumstances for any human to bear is the unknown. Waiting for transplant is the ultimate unknown. Waiting can be the hardest part of the whole process.

2. The time waiting for transplant is probably the longest period in a person’s life when they are not “in the rat race.” The rat race will begin again after transplant, if the outcome is a good one. Many people hope and work towards having this level of “nothing to do”; they call it a sabbatical. If patients can think of the waiting as a sabbatical, they can give themselves permission to use the time for inner work, planning, and a favorite (or previously unexplored) leisure activities.

3. Transplant is a major event that is very mysterious until you go through it yourself. Because of all of the emotions that go with this process, being sick, and the surgery, it is normal to cling to every word of the people who have previously been transplanted. Listening to other patients may help avoid potholes but be one has to be careful: some patients might be potholes. Compare not. No two experiences of transplant will be the same. Even for those who have had the transplant twice, the experiences are completely different. Even having the same body/mind does not equal having a similar transplant journey!

4. This is a time when patients and families need the most support. Some people will be a surprise because they will step forward and some will be a surprise because they step back. Patients and families may feel like the ones who step back have abandoned them and let them down. More than likely, those people love the patient/family very much and are ill-equipped to handle watching someone they care for go through such a difficult time. It doesn’t feel like love, but it is.

5. Even for the most peaceful patients and family members, there will be hard days along the transplant road; pre and post. Sometimes, it can be difficult to share the deepest emotions with the people in the “inner circle.” Sometimes patients/families need someone slightly removed from the situation to speak with openly and honestly. Social workers and therapists can be an invaluable resource on this road.

6. Don’t forget that you are living today. Waiting for transplant often feels like life is in a holding pattern. In many ways, it is, but the mind, the spirit and, relationships continue to evolve and grow, even if the body becomes weaker. Remaining conscious of That Which is Important can increase quality of life.

7. Emotions are impermanent and can be influenced by your body’s struggle. For example, some people have moments when they feel like they would rather “give up.” This is normal for someone who is dealing with end stage illness and the feeling will more than likely pass. Patients must be allowed space to cry or feel blue while keeping in mind that infections, fatigue and shortness of breath can be physical triggers for an emotional reaction. Knowing this might take the edge off. It is important to try not to take these emotions too seriously right away. If a patient can’t get out of the funk, that’s not unusual and they can consider various ways to treat this—medicine, acupuncture, therapy etc…

8. The transplant experience can be complicated. Bumps are expected for at least the first year. There will be a learning curve about the new meds, symptoms etc. It seems overwhelming but it will eventually become as routine as brushing teeth. For the first year, patients should be careful not to make many definite plans until things have stabilized. The have to be reminded that any symptom, even if it seems minor, should be reported to the team. There are surprising nuances to post-transplant symptoms. All the while, it is important to focus on goals and remember “This too shall pass.”

9. There are no guarantees for anyone, before or after transplant. Some people choose to cope with this through hyper-vigilance with germ management. Some people live life in fear of chronic rejection or missing a dose of immun-suppressants. Some people focus on their perception of a solution ie. Exercise, meditation, “living a normal life” etc. There is nothing wrong with any of these things, however, the only thing we can do is live a life we love so that no matter what happens, we have no regrets.

10. I am not illness. There is a part of me that is never sick, never tired and never scared. Separating “me” from my body is very helpful in coping with illness. I can still enjoy life, no matter my physical state of being.

Can you relate?

I heard this song at a concert this weekend and it brought tears to my eyes. I sure remember days like the one in this song.

System Advocacy: The Challenge for Patients and Families

How do we know what we don't know? How do we find out what we need to find out if we don't even know it exists? How do we ask the questions without knowing what we are looking for?

This predicament can be found in many areas of life. It also arises in many areas of patient advocacy. Perhaps it the most prevalent in the second circle of advocacy: System Advocacy.

Within any healthcare system, there are a few potential challenges:

1. Lack of Information: While health systems work primarily the same way, subtle differences may trip you up. Variations in language, protocols and programs may be cause for confusion and frustration. More so, you may miss the opportunity to take advantage of a valuable service because you didn't know it existed. With these subtle but meaningful differences in healthcare systems, getting the important information we need can be a challenge. It is vital we find ways to be system advocates and get our needs met no matter which system we happen to be navigating.

2. Patient Safety: Since the Institute of Medicine's 1999 study placing the number of US deaths per year due to medical error in hospitals at 44,000 and 98,000 overall, hospital systems have placed a large focus on patient safety. Great strides have been made with valuable programs, changes in philosophies, and general awareness. Systems are working hard to make healthcare a safer endeavor, but there is still room for improvement. It's time now for patients and families to join the fight and partner with their providers and their systems to improve quality care and decrease medical error. Without patients and families on the team, there is a limit to the success systems can have with regard to decreasing medical error. The time for partnership in the name of safety is now.

Potential Challenge to Understanding a Valuable Tool:

In the New Age of Healthcare, one can find many groundbreaking and inspiring initiatives within healthcare systems. Some of these initiatives will be "in plain view," patients will interact with these initiatives directly in their care. Other initiatives will be behind the scenes but will benefit patients and families just the same.

The problem arises when there are programs in place that can benefit patients/families but only if they are aware of the program and how it may be of help to them.

In 2004, the Institute for Health Improvement launched six initiatives to improve patient safety. Among those was the invention and implementation of a Rapid Response Team. This Team is a small group of highly trained specialists usually including a physician, nurse and respiratory therapist. There may be variations in which additional professionals, such as social workers or nurse practitioners, are members of the RRT.

The purpose of an RRT is to provide a safety net for patients, families and healthcare professionals. If a patient is experiencing changes in their health that are concerning, the RRT can be called in to assess the situation. This is most commonly beneficial for patients outside of the ICU who have just had surgery or are at risk for a cardiac event.

Sometimes a family member will be able to pick up on a subtle change in their loved one's skin color or tone of voice that a professional, not knowing the patient as well, could miss. Since family members often spend the most time with the patient, they are more closely monitoring their loved one and have the potential to catch a serious health episode before it becomes a crisis. However, it may not always be easy for families to convince the healthcare providers that what they are witnessing deserves immediate and critical attention.

If a family feels like their concerns are not being taken seriously or responded to quickly enough, they may be able to call the Rapid Response Team themselves. This is only true, obviously, if the hospital has an RRT, the family is aware it is available to them, and the health system allows a non-professional call to be placed to the RRT.

Hospitals that have Rapid Response Teams welcoming of family calls will have different ways to "publicize" this aspect of patient care. Some may post signs in the hospital rooms. Some may rely on the nurses to inform the family upon admission. Some may simply assume the patients and families understand this option is available to them.

The challenge here is the same in any scenario where a relatively unknown aspect of care has been implemented: making sure the patients and families know about, understand and feel comfortable using the RRT. In this case, assuring patients and families understand RRT is no easy task. This is a relatively complicated concept that requires a somewhat in-depth discussion of when it is appropriate to use, how to use it and who can use it. A button on a lab coat or a sign on the wall will most likely not be sufficient for patients and families to grasp and be comfortable with the RRT model.

Another challenge in the Rapid Response Team model, and other programs like this one, is a lack of easily recognizable language. Health Systems will often take a program like this one an adapt it to fit their philosophies, protocols, and staff/patient population. This can mean tweaking the actual implementation. It can also mean changing the name so that it is unique to the health system.

In the case of the Rapid Response Team, a healthcare system may use this model under a different title such as the "Advanced Clinical Assessment Team." On other health systems one might find a complete overhaul of the title such as "Condition H." While this language may be clear to healthcare professionals, these titles may not be recognizable to the average person.

In cases like this one, even if patients and families come into the situation with knowledge of the role of a Rapid Response Team there is now an added layer of distance and possible confusion. By renaming it, it requires education or an orientation for something previously understood by a different name. In today's fast paced healthcare, we can not be confident that healthcare professionals will have time to explain this vital information to patients and families. In times of illness, worry, and overwhelm, we can not rely on patients and families to read and comprehend written materials given to them.

While it is obvious that programs like this one are both needed and appreciated, one has to wonder why health systems use language that is less accessible to the public. In our busy healthcare systems, it can be a challenge for professionals ti find the time to really explain the programs that are available to patients and families.

As a system advocate we must:

• Pay attention to the subtler opportunities like signs in the hospital room and buttons on lab coats
• Ask direct questions about what programs are available to us
• Get involved with councils and advisory boards within our system to help professionals think through better ways to get this type of vital information to the patients and families who can benefit from it

Patients Partnering for Patient Safety:

Physicians and other healthcare professionals face a dilemma: the paradox of patient desires. On one hand, we want full disclosure and on the other hand we only want to hear good news. This is not a conscious phenomenon, both come from equally valid places.

Because being sick (or loving someone who is) carries with it such a profound feeling of being out of control, we want to be at least be in control of the information. "I may not be able to control what is happening to my body, but at least I can understand what is happening and all that is being done to treat it." With this kind of comprehension, we can feel like we have some power and participation in our own illness process. If we are kept in the dark and are missing information that later is quite relevant, we might be angry at our providers for not keeping us fully in the loop.

At the same time, being sick (or loving someone who is) is like standing on an ever-moving sandbar. One minute the earth feels steady and there is hope that the tides have ceased in shifting the ground beneath our feet. The next minute, an unexpected wave has taken the sand away and left us floating, hoping to find our footing again. We listen to our physicians differently and when we hear words like "but" or detect a change in vocal tones, our hearts jump into our throats. We are on pins and needles and sometimes, we don't want to (or just can't) hear bad news at that moment. The water is rising, the sand bar is moving, and we fear we may drown.

This is a tough dichotomy for professionals. In a system where there are real dangers and in a circumstance where things can shift and change on a dime, how can they be expected to navigate this paradox well? Perhaps part of the answer comes in both parties letting go of any idea that this can be done well (without the ability to read minds or have ESP.) Perhaps part of the answer comes in asking patients and families to have compassion for the professional's dilemma. Perhaps part of the answer is continue to train our professionals on effective communication.

There is another possible piece to this equation: preparation.

In aviation, there has been a big focus on safety since World War II. Getting passengers where they are going as safely as possible is an obvious priority that requires detailed check lists and other safety measures. It is the history and diligence of the aviation industry that has inspired those in medicine to take a closer look at their model and attitudes. It is the aviation model of safety that provides some clues as to how to address the patient paradox discussed earlier.

In aviation, the ego of the pilots has been trained to put safety above all else. The annoyance of passengers going through security has to be ignored in order to serve the greater purpose. As advocates focused on safety, perhaps we could benefit from this tried and true model.

We can become our own patient safety officers. We can watch and observe those around us. We can learn ways to speak up when a doctor doesn't wash his hands, when a phlebotomist does not sterilize our port before drawing blood or when a nurse is interrupted while counting out meds.

To become our own personal patient safety officer we must:

1. Learn the safety risks to look out for

2. Embrace techniques (in this book) for addressing a safety concern

3. Practice our safety observation and communication skills

Trust

I believe in the timing of the universe.

I believe in the fog that keeps me from seeing the horizon.

I believe in the sun that makes me squint my eyes.

I believe in the distraction that hits me when I am attached to concentration.

I believe in the creativity that comes when I feel empty of ideas.

I believe in the interruption that stops me in the middle of great progress.

I believe in the progress that blinds me to what matters in life.

I believe in the open parking space in a sea of cars.

I believe in the unexpected traffic jam when I am in a hurry.

I believe in the serious illness that hits just when my life has begun.

I believe in the second, third and fourth chance when I knew time had run out.

I believe in the love that wanders up just when I thought I was alone.

I believe in the loss of the person I thought was my forever.

I believe in the search for myself that ends with appreciation for others.

I believe in the friend who I never knew I needed until the gales of laughter.

I believe in the life that began so small and turned into endless possibilities.

I believe in the death that will come just when I have played my part.


I trust. I trust that there is no "good" and there is no "bad." I trust all of it is a part of this learning we call living. I trust that my heartaches teach me more about the joys. I trust that my joys will lead me to greater risks, bigger losses. I trust in the timing of the universe. I know I may not understand, but I trust.

I trust in the tears that come with the losses. I trust in the anger that comes when life seem too cruel to bear. I trust in the joy I feel when things "go my way." To trust does not mean to not experience the consequences of the timing of the universe. I trust that my reactions too are all a part of the timing.

Trust is my connection to The Divine.

April is Donation Awareness Month!

April is Organ/Tissue Donation Awareness Month! Have you registered as a donor? Does your state have an online registry? Is the heart on your driver's license first person consent? Does your family know where you stand?

Organ/Tissue donation saves lives. Consider recycling yourself.

Over 100,000 people are waiting right now for transplants in the US.
18 people die every day waiting for organs that didn't come in time.

Will you think about it, educate yourself, and share your decisions?

Here are some important things to know, thanks to Carolina Donor Services for this info:



Myths and Misconceptions

The largest barrier to organ & tissue donation
» Uninformed public
» Misinformation
» Gossip/Urban Legends


Myth No. 1.
If I agree to donate my organs, my doctor or the emergency room staff won't work as hard to save my life. They'll remove my organs as soon as
possible to save somebody else.

Reality.
When you go to the hospital for treatment, doctors focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care
has nothing to do with transplantation.

Myth No. 2.
Maybe I won't really be dead when they sign my death certificate. It'll be too late for me if they've taken my organs for transplantation. I might have otherwise recovered.

Reality. Although it's a popular topic in the tabloids, in reality, people don't start to wiggle a toe after they're declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Myth No. 3.
Organ donation is against my religion.

Reality.
Organ donation is consistent with the beliefs of most religions. This includes Catholicism, Protestantism, Islam and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a
member of your clergy. Another option is to check the Carolina Donor Services web site www.carolinadonorservices.org which provides religious
views on organ donation and transplantation by denomination.


Myth No. 4.
I'm under age 18. I'm too young to make this decision.

Reality.
That's true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it's what you wanted. Children, too, are in need of
organ transplants, and they usually need organs smaller than those an adult can provide.

Myth No. 5.
I want my loved one to have an open-casket funeral. That can't happen if his or her organs or tissues have been donated.

Reality.
Organ and tissue donation doesn't interfere with having an open- casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation.


Myth No. 6.
I'm too old to donate. Nobody would want my organs.

Reality.
There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself
prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.


Myth No. 7.
I'm not in the greatest health, and my eyesight is poor. Nobody would want my organs or tissues.

Reality.
Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs
and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.


Myth No. 8.
Rich, famous and powerful people always seem to move to the front of the line when they need a donor organ. There's no way to ensure that my organs will go to those who've waited the longest or are the neediest.

Reality.
The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently from anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all
celebrity transplants to an internal audit to make sure the organ allocation was appropriate.

Myth No. 9.
My family will be charged if I donate my organs.

Reality.
The organ donor's family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal
go to the transplant recipient.

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.

A different type of "why me?"

Tomorrow is the 6th anniversary of my second transplant. Last year, I searched www.unos.org 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,
Tiff

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,
Tiff

Heroes of Hope!

So honored to be a Hero of Hope.

I need your stories!!!!!

It seems, these days, each time I make a post I begin with apologizing for how long it has been since my last post.

Perhaps it is time for me to stop apologizing and just say that I will do my best to post as often as possible. March and April were so busy (not complaining) that it took all of May and most of June for me to recover. I am finally starting to feel human again.

This is my down time for the year and it is filled with writing a new book. Not the book I have promised in the past; that had to be put on hold until 2010. This book is called "Finding Your Voice: A Patient Advocacy Workbook" and I am honored to say it is grant funded.

I got the idea to write this book last year when I was giving a workshop at a local retirement community. Two residents were saying that they were uncomfortable with the fact that they didn't have a solid patient advocate nearby; like a child or a spouse. The people who would be advocating for them would be friends and acquaintances and so they doubted the advocates' abilities to know the finer nuances of their wishes. It is my hope that this workbook will provide a resource for friends, acquaintances and even strangers to understood not only the "check the boxes" wishes of the book's owner but to also understand their experiences, beliefs and goals. If we understand these three things, we will be a good advocate.

A secondary but equally important function of this workbook is to allow people filling out the pages to learn more about themselves in the process. Often we have general ideas about things but, when prompted, realize we haven't thought it through all of the way. Sometimes, it takes being asked a question to see your beliefs in a new way. So, while this book is designed to be a tool for the reader it is my hope and belief that it will also be a clarifying and affirming journey for the owner.

Finally, a third purpose to the workbook has emerged and that is to look at all of the ways that we can function as a patient advocate. When we use that term, for most of us, it conjures up images of a person pounding on the nurses station and demanding answers. That is one kind of advocate, one I call "The Tornado Advocate." While this is a valuable person to be or have on your side, this is only one sample of what it might look like to be an effective advocate.

Perhaps you are the person who sits by the bed to comfort the patient in times of fear or overwhelm. Perhaps you are the person who is "behind the scenes" and deals with insurance, bills and other paperwork. Perhaps you are motivated to function less at a personal level and prefer to be involved on a community, state or national level. This are just a few more snapshots of patient advocacy roles; all of them are equal and all of them should be respected.

This workbook will be looking at many different advocacy styles and activities. The book will be broken into "advocating for oneself," "advocating for a child," "advocating for a spouse, sibling or friend" "advocating for a parent," and "advocating for a stranger." In each of these sections there will be stories, tips, refection questions and a place to write action items.

I have already interviewed two wonderful people with great advocacy stories. One woman told me the story of her daughter being diagnosed with CF and not receiving quality care from her local hospital. With determination and passion, this mother did not blindly accept the bad news her doctors gave her but sought out every avenue she could find until she found better care. Today her daughter is 16 and a cheerleader. She attributes her daughter's life to the fact that she got better care and did not accept what she felt in her gut to be incorrect information.

Another woman I spoke to told me about the catch 22 she finds herself in: she makes $1,000 a month which is too much for prescription aid but her co-pays on two medications alone are $850.00 and $400.00. Inspired by her own need and the thought of other patients now and in the future, she has taken her case to the state and national level. With a meticulous and tireless letter writing campaign, she has gotten the attention of her state and US senators. The wheels turn slowly, but she is turning them.

These are just the kinds of stories I need! Do you have any stories about patient advocacy on a personal, community, state or national level? If so, I would love to set up a time to interview you for the workbook. Without your stories, this book simply won't happen.

What are you waiting for? Email me! tiffc73@gmail.com

Thank you as always for your support and generosity. Life is good for me and I hope it is for you too.

New Adventures: Online Workshops!

As some of you may know, I am lucky enough to have a grant this year which funds some of my workshops and talks.

Next month I am trying something new: online seminars.

I have decided to make my my first webinar available only to CF patients, families and friends. Due to cross infection issues, CF folks can not really come together for seminars anymore and this is my solution to that unfortunate reality.

I have provided the webinar information below. If you would like to pass this info along to other people in the CF Community, I would greatly appreciate it.

Thank you!!!
Tiffany

Project Compassion Presents: "Finding Your Voice in the Healthcare Maze" facilitated by CF patient and two-time double lung transplant recipient, Tiffany Christensen.

In each session, the primary focus will be advocating for yourself or someone you love in a healthcare setting. Secondary topics include advance care planning and the myths and truths of organ/tissue donation.
The webinars will be 3 Saturdays in a row: June 13th, 20th and 27th. They will take place at 3:00pm EST.

Cost:

For CF patients, friends and families within North Carolina, there is no enrollment fee. This webinar is being underwritten by a North Carolina grant and there is no cost.

For CF patients, friends and families within the USA but outside of North Carolina or for those in Canada, the cost is minimal.

To attend all three sessions: $25.00

To attend two of the three sessions: $20.00

To attend one of the three sessions: $10.00



To register visit: fyv.webtrain.com and click on "Browse Upcoming Events" and click "register now" under each session you wish to attend.

You may also register by sending an email directly to Tiffany at tiffany@project-compassion.org. Be sure to include contact information and the sessions you wish to attend.



To pay for registration (only for those outside of North Carolina), please visit:

https://www.merchantamerica.com/projectcompassion/

and click on "Register for the CF Finding Your VoiceWebinar."



To learn more about Tiffany, visit www.sickgirlspeaks.com

Questions may be sent directly to Tiffany at

tiffany@project-compassion.org

New Video!

Quick Update and another Top 10

Hello Dear Blog Reading Friends,

Once again this blog has sat silent for a long time while my life took on a hectic pace. I always feel so guilty for not writing and I miss the opportunities to share the things I'm thinking about. I write notes down on scraps of paper to revisit later but it just isn't the same as when the thought is fresh in my head!

I'm not complaining. Things have been busy because my work continues to gain momentum. Honestly, when I take the time to think about that, I find it hard to believe. I feel so lucky.

I want to tell you about the highlights of my travels but I have a meeting to prepare for in just a few minutes. Hopefully, I will have time to write more this weekend.

In the meantime, a facebook friend wanted to see the list of my Top 10 Tips and Tricks for Navigating the Healthcare Maze. You can find that below....

That reminds me to mention, I do a lot of my connecting these days on facebook with pictures, status updates and checking in on other people's comings and goings. If we aren't friends on facebook yet, look me up!

Until next blog, BIG GRATITUDE to you.

Tiffany's Top 10 Tips and Tricks for Navigating the Healthcare Maze

1. Knowledge, Awareness and Boundaries are the first three keys to effective patient advocacy. Gone are the days of relaxing and letting the doctor call all the shots— Be a humble, polite, persistent Squeaky Wheel!

2. Here’s the greatest irony of illness: when you are at your worst is exactly the time when you need to be at your best! If you aren’t up for self-advocacy, bring some one who can do it for you.

3. Being sick is difficult. Be kind to yourself and find ways to process your emotional needs while catering to your physical needs. Healing can happen no matter what the physical outcome.

4. There is power in the Written Word. Use signs whenever you can. Always take notes when getting medical instruction. Keep a list of your medications so you don’t have to repeat yourself.

5. Know the medical hierarchy! If you have a problem with a caregiver, it pays to know where to find their boss!

6. Seek out other patients who have traveled a similar road, they may help you avoid potholes.

7. When you seek out other patients who have traveled similar roads—be careful who you listen to—they may be a pothole.

8. If you go to a surgeon, they will want to do surgery. If you go to a medical doctor, they will want to give you medicine. If you go to an acupuncturist, they will want to give you acupuncture. What do you want to do?

9. Always ask direct questions. Never assume that your doctors are telling you “the whole truth and nothing but the truth” unless you have looked them in the eye and specifically asked what you want to know.

10. Illness is difficult but, if you look hard enough, you might find it also offers opportunities for growth, gratitude and joy.