Saturday, June 23, 2012
What I now have to add to this rant is that, in many cases, we are responsible for the language used around us at the time of our terminal illness/death. I see now that, with some exceptions, the ones we love are merely following our lead. When I see the dying railing against the "unfairness" of death, I see those around them declaring war and suffering under the weight of an invisible foe. When I see the dying who make peace and spend their time expressing gratitude for what was/is, I see those around them declaring their love, reminiscing about the times they will always cherish and working for ways to make the patient's time left full and harmonious.
The way we lead our loved ones during our final days is not something we decide. It is a reflection of how we lived and what we believe. How do you imagine you will lead those you love when you are on the deathbed? How would you like it to be? Are the two in alignment?
Tuesday, August 16, 2011
During the time I was very sick and not expected to live another year, one of the most challenging parts of human interaction was the pity I saw on so many people's faces. From the strangers who spotted my oxygen tank and nasal cannula to the people who knew me and my story, there was no shortage of awkward conversations in which pity dripped through people's voices and eyes. This drove me mad. I couldn't quite put my finger on what was so annoying to me about this. Now I think I know why.
Thursday, June 23, 2011
Wednesday, June 1, 2011
They're talking about us. The talking never stops, really. The amount of thought, energy and resources that go into exploring and implementing new ideas for improving patient care is truly astounding.
Thursday, May 19, 2011
A few months ago, I was walking through the Newark, NJ airport and saw an older woman with bleached white hair, bright red lips and blue eyelids. Her clothes clung to her like a second, sequined skin. My judgmental mind began its work by saying "What is she thinking?" and a smile crept onto my face.
Friday, December 3, 2010
Thursday, October 7, 2010
I have been getting some emails asking me about various aspects of writing and publishing. I am not always good at answering back because i tend to have long winded answers. For example, I have had a few people ask about self-publishing vs. traditional. I have a lot to say about that. If you want to talk about it, I would request you set up a time to talk to me on the phone. Email me and we can set up a time.
1. pause and step back from your push to produce. find a book, a podcast or a TV show that has similar themes and allow that to feed your soul and mind. sometimes taking in other's work will inspire and stir up what will become your work.
2. pick something that is fun or interesting for you to write about. even if this doesn't mean writing "the assignment," the most important thing is to feel that flow of creativity. that flow can only begin when you feel inspired. once the creativity floods open, then you will be more likely to write on the "assigned" topic.
Thursday, September 16, 2010
Tuesday, September 14, 2010
I have been doing some serious thinking lately! My mind is a whir with lots of things I look forward to sharing with you, my blogging buds. Two primary topics have been gallivanting through my little head these days: compassion and judgement. Two great tastes that go great together! Ok, not so much. But these are two fascinating studies in human nature, are they not?
In thinking about judgement, I will begin by confessing that I can be judgmental. I have knee-jerk reactions to things and people that I allow to go unjustified. Conversely, I can be compassionate too. Sometimes in a good way and other times to a fault. Giving all of your compassion away and leaving none for the self is a form of self neglect and (possibly) abuse. Would you agree? I am going to continue exploring this in later blogs but for now, I want to ask if anyone else out there remembers catching the "you should virus"?
I was 22 and facing end-stage lung disease. I was living in California while awaiting a double lung transplant. While I was rich in some life experiences, I was quite naive and innocent in many others. At that time in my life, I was not very judgmental of other people. This was not because I was saintly, it was because I had never really thought to be. I was too consumed with my own inadequacies to take time out of myself and judge other's life performance skills.
At this time, I began dating a man who was a little older than me (about 4 years) and had been on his own since his teen years. He owned a business and was certainly more are a part of the grown up set than I was. For this and other reasons, I idolized him and emulated him. I began dressing like him, talking like him and even thinking like him. (Sad, I know, but haven't many of us done this before we knew who we were?)
It was here I caught the "you should virus." He had frustrations at work and general frustrations with family and friends, as most of us do. His response to these frustrations often manifested as small or big rants to me. There was a formula to his rants, though. The sentences almost always started with "Well, I do this (implication here is "this" is being done well, with integrity or with great effort), and since I can do it she/he should too."
I began to learn this pattern and applied it. It felt good to say that because I was doing something well/right/difficult that this meant no one had an excuse not to live up to my standards. It achieved a nice effect of patting myself on the back and justifying my frustrations with other people. I had been infected by the You Should Virus and, little did I know, I would suffer the symptoms for the rest of my life.
As an older, more well-rounded adult, I could see the error of my ways. Intellectually it became obvious to me that people are different, with different talents and challenges, and comparing them to myself in this "If I can, then they should..." way was both pointless and silly (not to mention not-very-nice). At various times in my life I have made great effort to find medicine for the You Should Virus. Sadly, I find myself slipping back into it eventually. It seems to be in my blood.
Perhaps my approach has been wrong. Perhaps, once a person is infected with the You Should Virus, there is no cure. Perhaps this is a chronic illness that needs maintenance therapy. Currently, I am in the process of developing a therapy to help me keep this virus in check. I am excited to share this new therapy with you once I have done more research and self-experimentation.
Meanwhile, as I continue to think on these things, I wonder if I am looking for treatments to only medicate myself or if there are others infected. I would sincerely appreciate any comments on this. Am I the only one who has been infected by the You Should Virus?
Thursday, September 9, 2010
Last night I had a...what was it? A hissy fit? Pity party? Break down?
The physical symptoms were not far outside normal. A bit more stomach discomfort than usual with some added shoulder pain. No biggee. No biggee surely with someone with my history. But I lost it. I gave into it. Partly because I thought the tears might provide some relief from the pain in my shoulders and the tightness in my stomach but, more so, because I was just "over it." Some of it was that tiny fear that, no matter how long I've been post transplant, still lingers and whispers "maybe this is something serious marking the beginning of the end."
My quality of life is so much better with these beautiful lungs and yet, there are other nags. Not as dramatic or easy to see as being short of breath but they are, in some ways, nearly as constant. Most of the time I eat, I feel sick. I work against fatigue all day long, like trudging through a swamp. As I get older the body creaks and whines more after what was once meaningless tasks, like carting baggage through the airport.
Most days I do what all chronically ill people can do, put on my horse blinders, ignore the pains and nagging nausea and go about business. There is the internal sensor that watches for signals that could be potentially dangerous while filtering out the usual noise of my body's normal level of discomfort.
Usually the horse blinders are so firmly fixed, I forget there are they. My struggle for energy, or even post-meal nausea, doesn't register on any important conscious level. Even if I have to lie down until the nausea passes, I certainly don't CRY about it or feel particularly sorry for myself. Usually. So what happened last night? Why the sudden dam break?
I guess sometimes the noise needs to be heard. All of that noise registers somewhere it can only be ignored for so long. Sometimes, I think I have to give myself that moment of what? Self pity? Self compassion, perhaps. Because as lucky as I am, as healthy as I appear, there is still a struggle there. As much as I breeze past this noise, my ears still hear the whining and the whirling. As much as I wish it did not exist, it does. And so, there is a real need to give in once and awhile and hold myself close, as if rocking a baby while repeating "you're ok, you're ok, let it out now."
Last night, the dam broke. Tears come to my eyes as I write this, even the next day. Holes in the structure still remain, it appears. Sometimes, it gets old and we feel tired. Some days the noise is louder than our fingers-in-the-ear trick can protect us from and our feet can not outrun it. As lucky as I am, I am keepin' it real and letting you know, sometimes it can be hard too.
Today, the dam is in repair and my soul feels refreshed for the momentary breakdown. Self-compassion. I needed that. Thank you noise, I appreciate your persistence. Thank you horse blinders, I need you too. It's all a beautiful dance. Just have to keep it real.
Monday, August 30, 2010
If this video doesn't work for you, try clicking inside the black box or follow this link:
"Loving Daddy" on YouTube
"Finding Your Voice" is a workshop I developed with Project Compassion. In 2010, the Train the Trainer version of this workshop was launched and 6 videos were developed to accompany new trainers in teaching their friends, neighbors and community members about patient advocacy, advance care planning and organ/eye/tissue donation. This is the one of three videos made for the donation education module. For more information, see project-compassion.org and sickgirlspeaks.com
Saturday, August 14, 2010
Wednesday, July 21, 2010
Monday, July 19, 2010
exercises, useful information and cutting edge
Thursday, July 15, 2010
Saturday, July 3, 2010
Friday, June 25, 2010
Monday, June 21, 2010
- Patients may be simply too sick to attend meetings or actively pursue friendships with those walking a similar path
- Some diseases are so rare there are few patients to connect with and even fewer in a specific location
- If an illness can be contagious, a peer to peer meeting is potentially dangerous
- Family members may so overwhelmed with caregiving, they do not feel comfortable leaving the home for a support group or other peer support opportunities
A few months ago was the one year anniversary for the death of a beloved friend. Today I was thinking of her and missing her presence. On a whim, I decided to google her name. Being that she was a smart and active woman, there were lists of articles written about her and by her. Some had pictures and some had only her words. Through the tears in my eyes I felt the closeness I had been longing only a moment before. Here she was, in front of me, speaking through words of days past. It was as though we had been able to share a cup of coffee for just a little while. Somehow, with her image and language only a key stroke away, my grief was soothed.
I have been noticing other ways in which the power of the internet is gently influencing the grieving process. I am one of the millions of facebook addicts in this country and rely on it for way too much of my own socialization. For those who don't know, Facebook is an online networking site that makes it easy to keep in touch with hundreds of people at once, and yet somehow manage to create the feeling of closeness.
In the past year, I have had several facebook friends die. Because of the rules of facebook, the only person that can close down a facebook profile is the person themselves. This means when a person dies, the facebook page will remain. What I didn't expect was how people would continue to use that facebook page.
In all of the instances I have witnessed, people continue to write on the "wall" of the deceased person's profile. Sometimes they are sharing a funny memory the two had shared that made them smile that day. Some days they will express their deepest sadness and difficulties with getting through that day without the one they love. Other times, they will simply stop by and say "hi." In all of these postings, the grieving are speaking directly to the dead, without any sense of embarrassment or awkwardness. They are not talking about their loved one, they are talking to their loved one.
It is, in a way, the cyber version of a grave stone. A central place to go where a person's energy is stored and all who knew them are welcome to visit. It is a place to cry and share. It is a place to tell the ones we love we still care and they are not forgotten. It is, in my opnion, beautiful and unique. In a culture where we have so few ways to openly process our grief, there on facebook, we are loving those who left us behind.
I don't have profound words about the social implications of this new trend. I don't know really how it fits into our cultural grieving paradigm. All I know is that today I visited my friend on the Internet and it helped me feel close to her. When I go to the facebook profiles of those I love, I somehow feel like I am walking in the footprints they left behind. This, I think, is healing.
Sunday, June 20, 2010
Before I began my journey of political education, I had an image of what a professional lobbyist must look. This image likely came from various sources including media stories, Hollywood, legend and random stories I have heard in passing along the way. The characterization was not flattering and primarily consisted of men in suits with red faces doing dirty deals for questionable causes.
I have not spent much time in the political world but even a small amount of time is enough to see the corruption and disturbing practices of some individuals within the system. I am not naïve and neither is the American people; we know things in our government are not always just or pretty.
That said, I found my time with the professional lobbyists who were kind enough to let me shadow them to be both enlightening and inspiring. Dare I say I may not have had the whole picture when I had those ideas in my head? Dare I say the role lobbyists play in the ideals or the downfalls of our governmental processes are similar to the roles professionals play in medicine: there are some bad eggs but one bad apple should not spoil the bunch. Lobbyists with vision and integrity can be a vital and helpful part of the governmental machine. Likewise, lobbyists who use their talents and connections on behalf of less desirable issues, clients or agendas can be dangerous.
The role of the professional lobbyist is to be a paid intermediary. They arrange meetings on behalf of clients and speak with those in public office in an effort to move forward their client’s goals. What I did not understand before observing this world first hand was the wide variation in the type of lobbyists and how they work.
Industry lobbyists are professionals who only lobby for one group and organization. These lobbyists have one perspective, one point of view, on any given issue. An example of this is Jack, the lobbyist I shadowed who worked for the National Association of Social Workers. Jack himself is a social worker and therefore, as a lobbyist, was representing his own profession. This enabled Jack to bring a level of sincerity and integrity to his work because he understood the issues facing social workers first hand. In addition, the NASW has a clear message: to support bills that enable individuals to decide what is best for themselves. This clear message enabled Jack to lobby consistently for the same rights, policies and budget decisions without ever having to have a conflicting stance.
When I observed Jack, it was clear to me why he was a successful and effective advocate for both social workers and the people they serve. Jack is large in stature and larger in personality. He is both knowledgeable and quick minded. Partly because of his training and partly because of who he is, he has a natural and sincere interest in others and this reads clearly. Jack’s work has a firm foundation in the relationships he has formed. Representatives can trust him to be honest and consistent in his concerns and arguments. His combination of being no-nonsense, humorous and consistent makes him ideal for his role as industry lobbyist.
As Jack and I walked around the grounds of the various Legislature Buildings, he explained to me that the work he does happens in more places than the various meeting rooms. In fact, more often than not, by the time a bill gets to Committee, he knows what the vote will be because all of the real work takes place before the actual meeting. If Jack knows that his bill is going to be voted in the favor of his organization, he may not attend that committee meeting and, instead, track down more pressing business. It should also be noted that Jack had an unusual level of energy, as do many people in this line of work. At any given time, Jack might be watching and weighing in on as many as 30 bills.
Jack’s lobbying efforts happen whenever the opportunity presents itself. This means elevators, hallways, stairwells, and yes, even bathrooms. Whenever Jack can get a moment to talk to a resistant representative or a senate ally that needs to be informed of some problems on the horizon, he will take it. Life is that hectic in the political worlds, people are that busy, and the issues are that important.
So what kinds of things might you hear Jack saying in an elevator? He says one of his favorite opening lines is “OK, Representative, it’s time for you to get mad about this.”
Bottom line: It’s all about the relationships and seizing the opportunity
How do we build those relationships, you ask?
Legislative Liaisons: state employees who track bills similar to lobbyists but don’t have as much power as professional lobbyists
When people think of lobbyists, they are often envisioning contract lobbyists. These are the people and the firms that carry a load of clients with varying issues and perspectives. Often contract lobbyists are lawyers, but this is not always the case. I had the opportunity to sit down with the vice president of one of the biggest and most successful lobbying firms in Washington DC.
Side note: How did I get this chance, you ask? I’m glad you asked. This is an example of the power of “what’s the worst that can happen, they say no?” In my research, I found and joined a website called lobbyist.info. I took a stab in the dark and wrote to this faceless website, told them my project, and asked if they had any suggestions for a lobbyist I could shadow during an upcoming trip to DC. Would you believe they wrote back in less than 24 hours to say one of their board members had volunteered to meet with me, his name was Mike, and he would be contacting me. Who knew? Just goes to show, they can say no but they may say yes. Might as well ask, right?
Before I took my trip to DC, Mike and I had exchanged several emails and he seemed very casual and down-to-earth. Imagine my surprise when I arrived at his office and realized I had just walked into a real-life Hollywood set. The sleek office took up half of the eleventh floor with views overlooking Capitol Hill and the National Monument. When I told the receptionist who I was there to see she kindly motioned behind me and said “Are you Tiffany Christensen?” On a flat screen television behind me read “We welcome Tiffany Christensen.” This was the big leagues and I was wearing flip flops. Miscalculation of wardrobe, for sure!
When Mike came to greet me he was kind and, even in a full suit and tie, approachable. He began to show me around his office that had few corners and mostly curved walls leading us to various destinations. It would have taken me all day to find my way back to the receptionist. Immediately, Mike began to point to impressive and recognizable campaign displays hanging up. I don’t mean campaigns for candidates; I mean the campaigns you see in magazines and television advocating certain causes like preventing teens from becoming smokers and raising awareness about hepatitis C. These were not obscure. I recognized almost all of the campaigns.
I was confused. I thought I was visiting a lobbying firm but this sure looked like a marketing firm. Had I contacted the wrong people? Mike continued to explain the campaigns on the wall and the clients they designed them for. The Post Office, The Ronald McDonald House, and the YMCA were just a few. These were big clients with big agendas. This was a big firm with big ideas. I was looking at lobbying on a whole other level.
After a tour of the office, Mike and I sat down to look at a pile of client studies he had pulled for me. He went through each example and explained the client, the intention and the resulting action. The kind of representation his company provided varied.
Fill in examples here
There were consistencies between the techniques of Jack and Mike. They shared some of the same frustrations and some of the same love for the role they got to play within our political system. They both said the same thing to me several times:
“You, the constituent, have more power than I do.”
Whether you are working in a smaller setting, a large corporate setting, or somewhere in between, first person narrative still trumps all. Mike sites the main barrier to having that narrative heard is the fact that there are so many voices, it can be hard to break through the masses. This is part of what Mike’s firm specializes in. To remedy this, they have created a training center for people to come and learn how to present themselves at press conferences, on CNN, and any other large scale forum. They train everyone from CEO’s of major corporations to patients like me.
At some point during my talk with Mike, I began to feel both excitement for the impressive work that I was seeing in front of me and discouraged that this kind of lobbying skill was reserved for larger fish. Mike addressed this by encouraging me to approach firms like his. He repeatedly asked me to “not write it off” but instead ask for help. If there was a compelling story, a policy that needed addressed, or some other valuable message from a small organization or individual, Mike believes firms like his might be able to help. One way they could do this is by doing the work pro-bono and another way is to scale back the effort where it may not be a full out marketing campaign but the connections could be used to distribute important information, press releases etc.
I like Mike’s suggestion and I have another of my own. If I were to take away the glossiness of the campaigns I saw at Mike’s office, there would still be an essential, effective core. These campaigns were not just veneer, they were smart, concise, and clear. They took time and preparation. Whether they were letters, press releases, or large television campaigns, they were not off the cuff. They took in to consideration their audience, the political climate of that moment, and the emotional hook. When I walked away from the campaigns, there was never any question about what “the ask” was, either to the general population or to a particular political figure.
Bottom Line: We may not all be able to hire big firms like Mike’s. That doesn’t mean we can’t think like them. Make relationships the foundation of your advocacy efforts and then design a clear, memorable, and well-thought out campaign. We may not have access to industrial printers but we can all be prepared and clever in our presentation.
The Dark Side of Professional Lobbying:
If you ask a lobbyist why the profession has such a bad reputation, they will likely tell you that they are misunderstood. For those that have integrity and a true respect for the process, this is true. However, lobbyists did not get a bad reputation for no reason. There are some questionable lobbying practices and some that are simply corrupt.
Perhaps one of the more commonly known, and widely disapproved of, lobbying practices is called “the junket” which is an excursion for the purpose of pleasure at public expense. Junkets might include all-expenses-paid conferences in luxurious locations, or expensive meals and wine. An example of this kind of extravagance is Mr. Tom Delay’s many trips paid for by various organizations. These include: 10 days in Kona, Hawaii in 2002, in which the American Association of Airport Executives reimbursed him for $5,967.28, a trip to Singapore in 2001 in which The Heritage Foundation reimbursed Mr. and Mrs. Delay’s for $8,428, and the same year the National Center for Public Policy Research paid for his and his wife’s visit to Scotland that same year with a reimbursement of $28,106.
Large organizations set aside great sums of money to fund lobbying efforts. As an example, The Pharmaceutical Research and Manufacturers of America had $150 million budgeted for 2004. It is easy to see with these examples why the public looks down on the lobbying profession. While the practices may be tolerated, they clearly carry with them an air of bribery. With such lavish gifts, it is only logical to conclude that government officials would be unable to make objective decisions in the face of such gifts.
In 2007, the Honest Leadership and Open Government Act was passed to try an address some of the corruption, like the examples above. Here are a few key points of the law as found on commoncause.org:
Prohibiting Gifts by Lobbyists
- Prohibits lobbyists from providing gifts or travel to Members of Congress with knowledge that the gift or travel is in violation of House or Senate Rules.
Full Public Disclosure of Lobbying Activity
- Requires lobbyist disclosure filings to be filed twice as often, by decreasing the time between filing from semi-annual to quarterly.
- Requires lobbyist disclosures in both the Senate and House to be filed electronically and requires creation of a public searchable Internet database of such information.
- Increases civil penalty for knowing and willful violations of the Lobby Disclosure Act from $50,000 to $200,000 and imposes a criminal penalty of up to five years for knowing and corrupt failure to comply with the Act.
- Requires the Government Accountability Office to audit annually lobbyist compliance with disclosure rules.
- Requires lobbyists to certify they have not given gifts or travel that would violate Senate or House rules.
- Requires the disclosure of businesses or organizations that contribute more than $5,000 and actively participate in lobbying activities by certain coalitions and associations.
New Transparency for Lobbyist Political Donations, Bundling and other Financial Contributions
- Requires disclosure to the Federal Election Commission when lobbyists bundle over $15,000 semiannually in campaign contributions for any federal elected official, candidate (including Senate, House and Presidential), or leadership PAC.
- Requires lobbyists to disclose to the Secretary of the Senate and the House Clerk their campaign contributions and payments to Presidential libraries, Inaugural Committees or entities controlled by, named for or honoring Members of Congress.
Prohibited Use of Private Aircraft
- Requires that candidates, other than those running for a seat in the House, pay the fair market value of airfare (charter rates) when using non-commercial jets to travel. (This affects senate, presidential and vice-presidential candidates)
- Requires candidates for the House to comply with rule XXIII (15), which prohibits use of non-commercial aircraft.
Toughening Penalties for Falsifying Financial Disclosure Forms
- Increases the penalty for Members of Congress, Senior Staff and Senior Executive officials for falsifying or failing to report financial disclosure forms from $10,000 to $50,000 and establishes criminal penalties of up to one year of imprisonment.
As my lobbyist guide, Jack, told me “You win some and you lose a lot.” This is not a perfect system, far from it, but that does not mean it is not worth your time and effort. Even against big companies or fancy corporate lobbyists, the patient voice can still prevail.
The Patient Experience, Front and Center, Inspires Change
In the 1960’s and early 1970’s patients with kidney disease requiring dialysis were struggling. This expensive treatment was not covered by Medicare and had to be paid for by private insurance or out of pocket. In 1971, serious policy debates focusing on national health insurance were underway in both Congress and the
White House. During a Congressional Committee Meeting, The National Association of Patients on Hemodialysis (NAPH) was allowed to speak about the importance of insuring people receiving dialysis.
Despite urges not to by several kidney organizations, the vice-president of NAPH chose to take his dialysis treatment in full view of the committee before the meeting officially began. He was accompanied by a reluctant physician there to safe-guard the treatment and the patient. The press discovered this story and made the dramatic event known to the general public.
Some believe this brave display influenced the decision to create the Medicare ESRD (End Stage Renal Disease) Program; giving dialysis patients meeting Medicare criteria the coverage they need for treatment. Others believe the testimony of a parent of a hemophiliac child made a greater impression on congress. Either way, the fact remains: the patient and family voice was a catalyst for change on the national level