No matter how much potential there is in this moment...
No matter how much beauty there is around me...
No matter how alive the conversation is, buzzing around my head...
No matter how much I want to feel inspired...
When I feel deeply tired, I can not connect or feel any of these things.
No matter how many times I go through this...
No matter how many times I have returned to vibrating with the world...
No matter how many affirmations I repeat...
No matter how sure I am that this will be okay...
I still feel scared about my health and alone because I can not feel my purpose.
No matter if I am being irrational...
No matter if I am repeating myself...
No matter if I have forgotten my worth once again...
No matter if I will be okay tomorrow...
You continue to support, comfort and lift me up. Thank you.
Most days, I love my life. On days like today when I can not feel that love, you hold it for me until I have the energy to vibrate again.
It took a village to save my life and now, some days, it can take a village to remind me of what I am here to do.
To those who lift me up when I am low, thank you.
To those who let me soar when it's time to fly, thank you.
For those who love me no matter what, thank you.
No matter how my life ebbs and flows, I am grateful for you.
Monday, January 12, 2009
Friday, January 9, 2009
New Video!
Here is something I have been working on with Scott Person--my new "Bed's Eye View" video! This is a small sample of the lectures I give to healthcare professionals and students. Full length video lectures are available upon request.
Coming soon--video of patient and family workshops!
Coming soon--video of patient and family workshops!
Thursday, January 8, 2009
Is that a Bedside or Bed's Eye View?
When a patient is given news that they need to follow certain guidelines or have a particular procedure done the natural reaction is to look to the healthcare provider for insight. "How is this going to work?" "What am I supposed to do now?" "Will this hurt?" "How long is the recovery time?"
Often, I have asked these sorts of questions only to discover later that the answers I had been given were not coming from the patient perspective but from the eyes of the caregiver.
No Pain, No Gain
One big issue for many people with cystic fibrosis is being underweight. (I know, I know, how many people would love to have that problem? Trust me, it's not as fun as people seem to think it is!) Because of a "sludgy" GI system and the lack of digestive enzymes, CF patients are trained early on to eat high fat and high calorie foods. (Ok, this part isn't bad. But hey, there has to be some benefits to illness for each of us, right?)
Since I can remember my parents, my doctors and the dietitians have been singing the praises of high fat foods and special milkshakes which have around 600 calories per serving. Sounds logical, right? Infuse one food item with as much fat content and calories as possible, make it a part of the patient's diet and problem solved! Well, maybe for some patients but not for me.
Ingesting high fat foods and calorie-packed shakes usually result in me on the floor, doubled over with stomach pain. Somehow, this little detail never seems to get factored into the dietitians' weight gain formula. It has taken me years to let go of this philosophy which had been carved into my brain. I now know the foods that I enjoy and can eat a lot of without pain. So, I may not be drinking 600 calorie shakes but I will eat a higher volume of foods that won't hurt my stomach. In addition, the foods I eat are often healthier and without all of the preservatives that come with many high calorie items.
Recently, I went to a CF education day and the dietitian was lecturing on possible food combinations that would increase calorie consumption. Just looking at the list of foods she had printed out made my stomach hurt! Hot Pockets? Glazed doughnuts dipped in chocolate? Ouch! I was flaberghated that these were the food recommendations until it hit me: these were suggestions made out of thoery, science and logic, not experience. Ironically, health science and quality of life are often not compatible!
Better You Than Me
Two years after my second transplant, new research was indicating a link between chronic rejection and acid reflux. It was believed that, no matter how mild or severe a person's reflux may be, there was opportunity for stomach acid to aspirate into the lungs and cause damage, triggering chronic rejection. Because I had been down the chronic rejection road already, my team was anxious to have me iliminate this potential threat through a stomach sugery called a Nissen Fundoplication. For better or worse, I agreed.
When consulting with the GI surgeon, I asked all of the normal questions. "How does this work?" "What will the pain be like?" "How long will I have to miss work?" For each question, his answers were very reassuring. He described the surgery and assured me that the procedure was a very simple and straight forward one--the surgery itself would take less than a few hours. It was lapriscopic so there would be no major inscisons to heal and I would be out of the hospital in a day or two. Sounds easy!
After the surgery, my nausea was excrutiating. I was in the hospital for four days and spent weeks recovering at home. I couldn't eat without horrible pain and when I tried to go back to work I was too weak to make it through half of my shift. It would be almost a year before I could eat normally again. The Nissen Fundoplication had turned out to be far from easy.
To be fair, I know other people who have had this procedure and I certainly had a more difficult time than most. However, when I think back to the conversations I had with my surgeon, I realize that his descriptions of how things would play out had very little to do with what I would experience and more to do with his perceptions as a surgeon. My belief now is that because the surgery was easy for him, he translated his experience to the patient. In fact, when I went for my follow up appointment, his focus was on the healing of the laproscopic scars, not on the difficulty eating or the nausea. These things seemed to be of little concern to him and, I imagine, something that wouldn't stick in his brain to pass along to future Nissen Fundoplication paients.
As a surgeon, he described the procedure from the bedside view, from the surgeon's perspective. The surgery was short, very little cutting and a quick inpaitient stay. All of these facts added up in his mind to a simple procedure. Because he had not described this surgery from a patient perspective, nor was he focused on understanding the patient perspective, he had not adequately prepared me for the Nissen. My expecations were not properly aligned and this made the recovery even more difficult.
The bottom line? This man is a wonderful surgeon (truly, despite this story, I really like him) who would be an extaordinary surgeon if were just able to incorporate one piece of patient advice: just because the surgery is simple for you to perform does not mean it is simple to recover from it!
What I Know Now
There are some healthcare professionals who have a genuine interest in the patient experience. These are the people who ask questions and want to hear honest answers about how things have gone in the past or how they are going presently. After my Nissen Fundoplication one of my doctors heard that I was having trouble and sought me out. She wanted me, and some other patients with similar trials, to write out our experiences, starting with the consult and ending with an assesment of the procedure. We sent these essays to the doctor who read them, considered them and ultimately chose to be more careful in deciding when and to whom they recommended this surgery.
There are other practioners who have little interst in the patient experience and, I am completely guessing here, possibly have difficulty putting themselves in other people's shoes in many aspects of life. This does not mean that these professionals lack skill or are should be passed over for another doctor or nurse. In fact, these people could be at the top of their field. What it does mean, however, is that they are unlikely to be a good resource for a patient looking for clues as to what lies ahead or considering their quality of life in a particular equation.
Listen to what you are hearing. Does it match with your experience or the experiences of those around you? When the professional is explaining things, are they speaking mostly from their perspective or are they talking about what other patients have expressed to them in the past? If you begin to get a sense that your caregiver is not one to look at things from a "bed's eye view" consider what they are telling you but also seek out additional patients and professionals to give you a better idea of what may be in store for you. We can't all be perfect at everything so there's no need to blame a caregiver for not being good at thinking through quality of life issues but it is your responsibility to use your common sense and find someone who can.
Often, I have asked these sorts of questions only to discover later that the answers I had been given were not coming from the patient perspective but from the eyes of the caregiver.
No Pain, No Gain
One big issue for many people with cystic fibrosis is being underweight. (I know, I know, how many people would love to have that problem? Trust me, it's not as fun as people seem to think it is!) Because of a "sludgy" GI system and the lack of digestive enzymes, CF patients are trained early on to eat high fat and high calorie foods. (Ok, this part isn't bad. But hey, there has to be some benefits to illness for each of us, right?)
Since I can remember my parents, my doctors and the dietitians have been singing the praises of high fat foods and special milkshakes which have around 600 calories per serving. Sounds logical, right? Infuse one food item with as much fat content and calories as possible, make it a part of the patient's diet and problem solved! Well, maybe for some patients but not for me.
Ingesting high fat foods and calorie-packed shakes usually result in me on the floor, doubled over with stomach pain. Somehow, this little detail never seems to get factored into the dietitians' weight gain formula. It has taken me years to let go of this philosophy which had been carved into my brain. I now know the foods that I enjoy and can eat a lot of without pain. So, I may not be drinking 600 calorie shakes but I will eat a higher volume of foods that won't hurt my stomach. In addition, the foods I eat are often healthier and without all of the preservatives that come with many high calorie items.
Recently, I went to a CF education day and the dietitian was lecturing on possible food combinations that would increase calorie consumption. Just looking at the list of foods she had printed out made my stomach hurt! Hot Pockets? Glazed doughnuts dipped in chocolate? Ouch! I was flaberghated that these were the food recommendations until it hit me: these were suggestions made out of thoery, science and logic, not experience. Ironically, health science and quality of life are often not compatible!
Better You Than Me
Two years after my second transplant, new research was indicating a link between chronic rejection and acid reflux. It was believed that, no matter how mild or severe a person's reflux may be, there was opportunity for stomach acid to aspirate into the lungs and cause damage, triggering chronic rejection. Because I had been down the chronic rejection road already, my team was anxious to have me iliminate this potential threat through a stomach sugery called a Nissen Fundoplication. For better or worse, I agreed.
When consulting with the GI surgeon, I asked all of the normal questions. "How does this work?" "What will the pain be like?" "How long will I have to miss work?" For each question, his answers were very reassuring. He described the surgery and assured me that the procedure was a very simple and straight forward one--the surgery itself would take less than a few hours. It was lapriscopic so there would be no major inscisons to heal and I would be out of the hospital in a day or two. Sounds easy!
After the surgery, my nausea was excrutiating. I was in the hospital for four days and spent weeks recovering at home. I couldn't eat without horrible pain and when I tried to go back to work I was too weak to make it through half of my shift. It would be almost a year before I could eat normally again. The Nissen Fundoplication had turned out to be far from easy.
To be fair, I know other people who have had this procedure and I certainly had a more difficult time than most. However, when I think back to the conversations I had with my surgeon, I realize that his descriptions of how things would play out had very little to do with what I would experience and more to do with his perceptions as a surgeon. My belief now is that because the surgery was easy for him, he translated his experience to the patient. In fact, when I went for my follow up appointment, his focus was on the healing of the laproscopic scars, not on the difficulty eating or the nausea. These things seemed to be of little concern to him and, I imagine, something that wouldn't stick in his brain to pass along to future Nissen Fundoplication paients.
As a surgeon, he described the procedure from the bedside view, from the surgeon's perspective. The surgery was short, very little cutting and a quick inpaitient stay. All of these facts added up in his mind to a simple procedure. Because he had not described this surgery from a patient perspective, nor was he focused on understanding the patient perspective, he had not adequately prepared me for the Nissen. My expecations were not properly aligned and this made the recovery even more difficult.
The bottom line? This man is a wonderful surgeon (truly, despite this story, I really like him) who would be an extaordinary surgeon if were just able to incorporate one piece of patient advice: just because the surgery is simple for you to perform does not mean it is simple to recover from it!
What I Know Now
There are some healthcare professionals who have a genuine interest in the patient experience. These are the people who ask questions and want to hear honest answers about how things have gone in the past or how they are going presently. After my Nissen Fundoplication one of my doctors heard that I was having trouble and sought me out. She wanted me, and some other patients with similar trials, to write out our experiences, starting with the consult and ending with an assesment of the procedure. We sent these essays to the doctor who read them, considered them and ultimately chose to be more careful in deciding when and to whom they recommended this surgery.
There are other practioners who have little interst in the patient experience and, I am completely guessing here, possibly have difficulty putting themselves in other people's shoes in many aspects of life. This does not mean that these professionals lack skill or are should be passed over for another doctor or nurse. In fact, these people could be at the top of their field. What it does mean, however, is that they are unlikely to be a good resource for a patient looking for clues as to what lies ahead or considering their quality of life in a particular equation.
Listen to what you are hearing. Does it match with your experience or the experiences of those around you? When the professional is explaining things, are they speaking mostly from their perspective or are they talking about what other patients have expressed to them in the past? If you begin to get a sense that your caregiver is not one to look at things from a "bed's eye view" consider what they are telling you but also seek out additional patients and professionals to give you a better idea of what may be in store for you. We can't all be perfect at everything so there's no need to blame a caregiver for not being good at thinking through quality of life issues but it is your responsibility to use your common sense and find someone who can.
Sunday, January 4, 2009
Input and Output
This blog and I have been quiet for a long time. It was a well-needed break. It's not that this blog is a great burden. Compared to how often I wrote during 2007, I barely wrote anything in 2008. But it is one more thing on a long list of places where I put energy outwards. This year has been revolutionary in my life. I have experienced more success and adventure than I can ever remember having. I have built a career in a short period of time and continue to be absolutely astounded that people want to hire me to speak. No matter how well things are going I still have that voice in the back of my head saying "What do you have to say that's unique and important enough that you should request an audience?" I used to be bothered by that voice and labeled it "lack of self-esteem." I suppose that could be accurate but that voice also motivates me to be better, stretch and try new and fresh ideas.
But I digress.
For me, this has been a year of talking, and talking, and talking (and then talking about talking). I reached a point in early December of plain old emptiness. I was talked out. My ideas were getting stale and I needed a reboot. I needed to compensate for all of the output with some input. I wanted to learn for awhile, not teach. I wanted to be quiet, not talk. I wanted to plant seeds, not gather flowers. So I got surgery on my mouth. I needed it and it was one surefire way to make myself stop talking. And even after my mouth healed, I still wanted to be quiet. And I am still not ready for much talking.
While 2008 was amazing, it was also out of balance. This year, I seek balance in my input and output. Don't get me wrong, I hope to speak as much or more than in 2008. Public speaking is my passion. But I also want to listen. I want to take classes and learn new ways of thinking and looking at life. I want to take vacations and stop thinking for awhile. I want to play as much as I work...well, ok. Almost as much.
The lessons of illness inform my life now, as always.
1. There is nothing that can't be declined or canceled. Nothing I do (or don't do) will cause the earth to come to an abrupt halt. Say no when you have to, or even when you just "should."
2. Society tells us that life is about accomplishments. When the dusts settles, accomplishments will not be at your side when you are sick, alone or scared. Creating meaning in your life should never be at the sacrifice of creating meaningful relationships and appreciating love.
3. Live it now because today could be the healthiest day of the rest of your life.
So many people have been overwhelmingly kind to me this year. To all of you who have encouraged me this year, exchanged ideas, read my book or helped me find my place: Thank You.
May 2009 be a year of love, health and dreams coming true for all of us. May those who are suffering find strength and comfort.
May we all learn from what is given to us, no matter how painful or sweet the lesson plan may be.
But I digress.
For me, this has been a year of talking, and talking, and talking (and then talking about talking). I reached a point in early December of plain old emptiness. I was talked out. My ideas were getting stale and I needed a reboot. I needed to compensate for all of the output with some input. I wanted to learn for awhile, not teach. I wanted to be quiet, not talk. I wanted to plant seeds, not gather flowers. So I got surgery on my mouth. I needed it and it was one surefire way to make myself stop talking. And even after my mouth healed, I still wanted to be quiet. And I am still not ready for much talking.
While 2008 was amazing, it was also out of balance. This year, I seek balance in my input and output. Don't get me wrong, I hope to speak as much or more than in 2008. Public speaking is my passion. But I also want to listen. I want to take classes and learn new ways of thinking and looking at life. I want to take vacations and stop thinking for awhile. I want to play as much as I work...well, ok. Almost as much.
The lessons of illness inform my life now, as always.
1. There is nothing that can't be declined or canceled. Nothing I do (or don't do) will cause the earth to come to an abrupt halt. Say no when you have to, or even when you just "should."
2. Society tells us that life is about accomplishments. When the dusts settles, accomplishments will not be at your side when you are sick, alone or scared. Creating meaning in your life should never be at the sacrifice of creating meaningful relationships and appreciating love.
3. Live it now because today could be the healthiest day of the rest of your life.
So many people have been overwhelmingly kind to me this year. To all of you who have encouraged me this year, exchanged ideas, read my book or helped me find my place: Thank You.
May 2009 be a year of love, health and dreams coming true for all of us. May those who are suffering find strength and comfort.
May we all learn from what is given to us, no matter how painful or sweet the lesson plan may be.
Thursday, November 27, 2008
Thankful
I hope it goes without saying that I am thankful for more things than I can possibly ever express. 2008 has been the most exciting year of my life and things continue to progress. I have already received word that Project Compassion and I were awarded funding to expand our work with the "Finding Your Voice" project. More and more speaking opportunities are coming my way. The universe continues to convince me that I am on the right path.
It was only 4.5 years ago that I was unsure if I would live another day. It was only 4.5 years ago that I was mourning the things that would never be. As I grow closer to my monumental 5/9 year anniversary post-transplant, I am in awe of the shape my life has taken.
So, I am thankful and without words. "Thank you" is a phrase you hear every day. "Thank you for handing me that napkin," "Thank you for holding the door open," "Thank you for making my cup of coffee."
How can I use this same phrase when I am expressing my gratitude for the families who lost a loved one and chose to help others despite their own pain with the gift of donation? How can I merely say "thank you" to my parents, my family and my friends who sat by me, took care of me and struggled to say goodbye too soon? What does "thank you" really mean to my healthcare team who has sacrificed countless hours to save the lives of people like me?
Somewhere, someday, I hope I discover a phrase that is more powerful and more representative of the passionate gratitude I feel in my heart for everyone who has made my mere breath a reality. "Thank you" just doesn't cut it but it's all I've got.
So, thank you.
It was only 4.5 years ago that I was unsure if I would live another day. It was only 4.5 years ago that I was mourning the things that would never be. As I grow closer to my monumental 5/9 year anniversary post-transplant, I am in awe of the shape my life has taken.
So, I am thankful and without words. "Thank you" is a phrase you hear every day. "Thank you for handing me that napkin," "Thank you for holding the door open," "Thank you for making my cup of coffee."
How can I use this same phrase when I am expressing my gratitude for the families who lost a loved one and chose to help others despite their own pain with the gift of donation? How can I merely say "thank you" to my parents, my family and my friends who sat by me, took care of me and struggled to say goodbye too soon? What does "thank you" really mean to my healthcare team who has sacrificed countless hours to save the lives of people like me?
Somewhere, someday, I hope I discover a phrase that is more powerful and more representative of the passionate gratitude I feel in my heart for everyone who has made my mere breath a reality. "Thank you" just doesn't cut it but it's all I've got.
So, thank you.
Sunday, November 16, 2008
The Thin Line of Humor
This year I have had many healthcare professionals and students approach me to discuss the issue of humor when caring for a patient. They noted that I used humor in my talks and wanted to know how I felt about them adopting a similar lightness when doing their work.
It is undoubtable that some of the funniest moments in my life have come out of dark circumstances. I can think of many occasions where my mother and I were doubled over laughing about a hospital comedy of errors or the hilarity of my disgusting bodily functions.
With that said, I have come to find that when one chooses to engage a patient with humor, there is a very thin and unpredictable line that must be minded.
Midnight Mishap
A week after my first transplant I was taken out of ICU and put on a "surgery step down" unit. This meant that I had highly skilled nurses but I wasn't being constantly monitored and my nurse had around five or six patients to attend to, instead of the ICU nurse who only took care of me. I will breathing on my own but still very weak. I was unable to move without assistance because I still had four chest tubes in and those were attached to two large and cumbersome boxes.
One night, I woke up and had to urinate. I tilted my bed up in order to call the nurse for help. Somehow, the cord to the call bell had been wrapped around the bed rails in such a way that as the head of the bed tilted up the cord pulled out of its wall socket. I was in a corner room, far away from the nurses station. I was in the dark and had no way to get up or call for help. I was stuck and had a very strong aversion to wetting the bed, for obvious reasons.
My mind went into overdrive and I contemplated yelling out, trying to maneuver my IV pole and the two chest tube containers or picking a spot on the bed to wet. None of these seemed like a good or enticing idea. Suddenly, I was jolted with clarity and leaned over and picked up the phone. I dialed the hospital operator and asked for her to connect me to the nurses station in the surgery step down unit. The operator told me that was not a number they are authorized to connect to and she could not put me through. I calmly told her that I was a patient on that floor and that my call bell had been pulled out of the wall. In response to her shocked silence I whispered "and I have to pee."
The operator was emphatic in her apologies and hung up with me immediately to call the nurses station. Apparently, she had called the wrong one, one that was on the other side of the floor. After some arguing with the operator about how she did not have a patient with that name, it clicked that perhaps the nurse should check the other side of the building. Like a team of wild horses, nurses descended on my room in flash of panic and efficiency. The lights were on and I was safely in the bathroom within seconds of their arrival.
Coming out of the bathroom, I was met with several pairs of worried and searching eyes.
"Are you ok?"
"How did that happen?"
"I am so sorry."
With each apology, the reality of what had just happened hit me and I was hysterical. Hysterically laughing, that is. My laughter was soon contagious and we all enjoyed a good round of "Can you believe..." and "then she said to me..." and "remember when you said..."
It was a great moment of joy followed by days of recounting the indecent to everyone who entered my room. The story became a legend and we all benefited from its humor.
Sometimes crazy stuff happens in the hospital. Hopefully nobody gets hurt and it can serve as needed amusement.
Smurf You
One side effect of severe lung disease can be a blue tint to the lips and fingernails. A friend of mine was complaining about how sick she had become of the blue tint and how much she looked forward to transplant returning the color of her skin to its rightful pink.
In response to this, one of her friends decided to make a joke to cheer her up. She began to laugh and talk about how my friend was lucky because she looked like a smurf and that smurfs were really cute.
Sometimes, when things are really hard jokes just aren't funny. This was one of those times. My friend did not laugh and the awkward moment could have been cut with a chainsaw.
You Had to Be There
At some point after my second transplant, I had the brilliant idea that I should try writing a one-woman show about illness and dying. The catch? I wanted it to be a comedy.
I enrolled in a stand up comedy class where myself and seven other novices tried our hands at the most difficult performing art imaginable. I discovered quickly that I was not a natural comic but that didn't stop me from making life harder on myself by attempting to write and perform bits about wearing oxygen and alost dying. Yes, I'm nuts.
As I stood up week after week in front of my class of healthy bodied adults, I bombed over and over. Even when I thought the material was pretty hilarious the audience's response seemed to be complete shock and confusion. Is this funny? Should I be laughing? How can it be supposed to be funny when she's talking about dying?
After some painful nights of failed comedy it dawned on me: illness humor is completely an inside joke. The only people I have ever really been able to laugh with about being sick are my fellow sickies, my family and my caregivers. Otherwise, to the average healthy person, it's just terrifying.
What I Know Now
Because I now know that illness is an inside joke, I also understand that each person's illness contains it's own specific inside humor. Unless I know someone very well, I will not joke about their ailments. Sure, hemorrhoids might be ripe for the comedy pickings, but to the person dealing with hemorrhoids it's quite likely it won't feel like a laughing matter.
Err on the side of caution and keep the jokes to yourself. When you realize you are in the inner circle, then and only then will it be safe to make light of serious stuff. Some days it's true what they say, laughter is the best medicine. That isn't always the case, however. Sometimes crying is the best medicine too.
It is undoubtable that some of the funniest moments in my life have come out of dark circumstances. I can think of many occasions where my mother and I were doubled over laughing about a hospital comedy of errors or the hilarity of my disgusting bodily functions.
With that said, I have come to find that when one chooses to engage a patient with humor, there is a very thin and unpredictable line that must be minded.
Midnight Mishap
A week after my first transplant I was taken out of ICU and put on a "surgery step down" unit. This meant that I had highly skilled nurses but I wasn't being constantly monitored and my nurse had around five or six patients to attend to, instead of the ICU nurse who only took care of me. I will breathing on my own but still very weak. I was unable to move without assistance because I still had four chest tubes in and those were attached to two large and cumbersome boxes.
One night, I woke up and had to urinate. I tilted my bed up in order to call the nurse for help. Somehow, the cord to the call bell had been wrapped around the bed rails in such a way that as the head of the bed tilted up the cord pulled out of its wall socket. I was in a corner room, far away from the nurses station. I was in the dark and had no way to get up or call for help. I was stuck and had a very strong aversion to wetting the bed, for obvious reasons.
My mind went into overdrive and I contemplated yelling out, trying to maneuver my IV pole and the two chest tube containers or picking a spot on the bed to wet. None of these seemed like a good or enticing idea. Suddenly, I was jolted with clarity and leaned over and picked up the phone. I dialed the hospital operator and asked for her to connect me to the nurses station in the surgery step down unit. The operator told me that was not a number they are authorized to connect to and she could not put me through. I calmly told her that I was a patient on that floor and that my call bell had been pulled out of the wall. In response to her shocked silence I whispered "and I have to pee."
The operator was emphatic in her apologies and hung up with me immediately to call the nurses station. Apparently, she had called the wrong one, one that was on the other side of the floor. After some arguing with the operator about how she did not have a patient with that name, it clicked that perhaps the nurse should check the other side of the building. Like a team of wild horses, nurses descended on my room in flash of panic and efficiency. The lights were on and I was safely in the bathroom within seconds of their arrival.
Coming out of the bathroom, I was met with several pairs of worried and searching eyes.
"Are you ok?"
"How did that happen?"
"I am so sorry."
With each apology, the reality of what had just happened hit me and I was hysterical. Hysterically laughing, that is. My laughter was soon contagious and we all enjoyed a good round of "Can you believe..." and "then she said to me..." and "remember when you said..."
It was a great moment of joy followed by days of recounting the indecent to everyone who entered my room. The story became a legend and we all benefited from its humor.
Sometimes crazy stuff happens in the hospital. Hopefully nobody gets hurt and it can serve as needed amusement.
Smurf You
One side effect of severe lung disease can be a blue tint to the lips and fingernails. A friend of mine was complaining about how sick she had become of the blue tint and how much she looked forward to transplant returning the color of her skin to its rightful pink.
In response to this, one of her friends decided to make a joke to cheer her up. She began to laugh and talk about how my friend was lucky because she looked like a smurf and that smurfs were really cute.
Sometimes, when things are really hard jokes just aren't funny. This was one of those times. My friend did not laugh and the awkward moment could have been cut with a chainsaw.
You Had to Be There
At some point after my second transplant, I had the brilliant idea that I should try writing a one-woman show about illness and dying. The catch? I wanted it to be a comedy.
I enrolled in a stand up comedy class where myself and seven other novices tried our hands at the most difficult performing art imaginable. I discovered quickly that I was not a natural comic but that didn't stop me from making life harder on myself by attempting to write and perform bits about wearing oxygen and alost dying. Yes, I'm nuts.
As I stood up week after week in front of my class of healthy bodied adults, I bombed over and over. Even when I thought the material was pretty hilarious the audience's response seemed to be complete shock and confusion. Is this funny? Should I be laughing? How can it be supposed to be funny when she's talking about dying?
After some painful nights of failed comedy it dawned on me: illness humor is completely an inside joke. The only people I have ever really been able to laugh with about being sick are my fellow sickies, my family and my caregivers. Otherwise, to the average healthy person, it's just terrifying.
What I Know Now
Because I now know that illness is an inside joke, I also understand that each person's illness contains it's own specific inside humor. Unless I know someone very well, I will not joke about their ailments. Sure, hemorrhoids might be ripe for the comedy pickings, but to the person dealing with hemorrhoids it's quite likely it won't feel like a laughing matter.
Err on the side of caution and keep the jokes to yourself. When you realize you are in the inner circle, then and only then will it be safe to make light of serious stuff. Some days it's true what they say, laughter is the best medicine. That isn't always the case, however. Sometimes crying is the best medicine too.
Saturday, October 25, 2008
The Language of Illness
Since I can remember, the words "handicapped" and "disabled" have made my stomach turn. I have never used those words to describe myself, even at a time when I had a handicap placard and very much fit the definition.
I chose the title of my book, "Sick Girl Speaks!", as a tongue and cheek way of asking what does being a "sick girl" look like?
Recently, I began noticing when I said things like "my CF" or "I'm a lung transplant." Is it my CF or THE CF. Am I a lung transplant? No, I am a person who had a lung transplant.
The use of language in relationship to illness fascinates me. What words do you embrace and which do you shun? Why? Do you think the little words we use, like "my" CF instead of "the" CF make an impact on our psyche?
I can't wait to hear everyone weigh in.
I chose the title of my book, "Sick Girl Speaks!", as a tongue and cheek way of asking what does being a "sick girl" look like?
Recently, I began noticing when I said things like "my CF" or "I'm a lung transplant." Is it my CF or THE CF. Am I a lung transplant? No, I am a person who had a lung transplant.
The use of language in relationship to illness fascinates me. What words do you embrace and which do you shun? Why? Do you think the little words we use, like "my" CF instead of "the" CF make an impact on our psyche?
I can't wait to hear everyone weigh in.
An Honest Look
Last week, I was talking to a nurse practitioner who runs a local health clinic. It was my job to take the concerns and critiques from those who frequented this health center and present them to her. From there, I was to come up with various angles on advocating within this system.
Jenny, the nurse practitioner, is a beautiful, kind and dedicated caregiver. She has been working at the same place for roughly twenty years. Her passion for her work and her desire to make the clinic as effective and patient-centered as possible is crystal clear.
After collecting my surveys from the patients, I went in for my meeting with Jenny armed with three pages of issues to discuss. This clinic has a stellar reputation and many of the surveys cited no complaints and that the staff should be "given a medal for sainthood." Many of the issues were simple misunderstandings and Jenny and I moved through them quickly, feeling gratified that we could clarify things for the patients.
There were one or two complaints, however, that were more serious. Accusations of over-medicating geriatric patients and a few stories of visits gone awry. I thought nothing of this before the meeting but when I presented these few complaints to Jenny her faced changed in a way that seemed very familiar. We kept talking but the back of my mind wanted to store that look on her face to revisit later. I knew I had seen that face before.
As I drove away after our meeting, it hit me almost immediately. There, in front of me, was the face I had seen my mother make too many times. I had seen this face on other mothers as well. It was the expression you see when a child tells their mother "I hate you" or "you don't care about me!" The face of a person who has given everything, sacrificed themselves more than anyone could ever know, only to be told that it isn't good enough.
Jenny's facial expression matched that of my mother when I was in my nasty teen years because, like a mother, she had dedicated her life to these people and given her heart to her work. To discover that some people did not see her sacrifices but instead had only criticisms, well, it broke a piece off of her heart. The face I was seeing was a person crushed by lack of appreciation.
How often does this happen in the world of healthcare? I would venture to guess it happens on a regular basis. With Jenny in my mind, I began to think about the healthcare professionals I had put in my critical sights. I thought of "Betty," the transplant coordinator I wrote about in "Sick Girl Speaks!" Betty was the one who told me to forget about a second transplant and prepare to die. When "Vicki" took her place and offered me a chance on the list, I immediately began to attack Betty for her lack of foresight, compassion and energy. I accused her of being lazy and of not caring about her patients.
Seeing Jenny's face made me think back to those criticisms and I had to ask myself if those things I believed about Betty were really true. I had to admit to myself that I could never know the reasons Betty did what she did and therefore, I could never know if my judgments of her motives and character had any merit whatsoever. I imagined Betty's face as she read my book and felt remorse. What if she believed what she told me and she thought she was doing the best thing she could by telling me the truth? What if I had crushed Betty with my lack of understanding and appreciation? What if I had been entirely unfair?
And so it is, my continued journey into transforming my perceptions of healthcare professionals. Because we all carry the banners of "us" and "them" in our current healthcare culture, making bold and hurtful statements like mine comes to many patients easily. Too often my caregivers appear as the enemy, especially when they deliver news I do not want to hear in a way I do not want to hear it.
So, to Betty and others, I apologize for my bold and possibly false assumptions. To Jenny, I thank you for letting me see the disappointment that comes when dedication meets disapproval. When I find myself blasting my doctor or my nurse in the future, I will think of Jenny's face first from now on.
Humans. I am finally seeing my providers as humans. How strange that I have accused them for so long of seeing me as an object, an "it", only to discover that I have been doing exactly the same thing myself.
Jenny, the nurse practitioner, is a beautiful, kind and dedicated caregiver. She has been working at the same place for roughly twenty years. Her passion for her work and her desire to make the clinic as effective and patient-centered as possible is crystal clear.
After collecting my surveys from the patients, I went in for my meeting with Jenny armed with three pages of issues to discuss. This clinic has a stellar reputation and many of the surveys cited no complaints and that the staff should be "given a medal for sainthood." Many of the issues were simple misunderstandings and Jenny and I moved through them quickly, feeling gratified that we could clarify things for the patients.
There were one or two complaints, however, that were more serious. Accusations of over-medicating geriatric patients and a few stories of visits gone awry. I thought nothing of this before the meeting but when I presented these few complaints to Jenny her faced changed in a way that seemed very familiar. We kept talking but the back of my mind wanted to store that look on her face to revisit later. I knew I had seen that face before.
As I drove away after our meeting, it hit me almost immediately. There, in front of me, was the face I had seen my mother make too many times. I had seen this face on other mothers as well. It was the expression you see when a child tells their mother "I hate you" or "you don't care about me!" The face of a person who has given everything, sacrificed themselves more than anyone could ever know, only to be told that it isn't good enough.
Jenny's facial expression matched that of my mother when I was in my nasty teen years because, like a mother, she had dedicated her life to these people and given her heart to her work. To discover that some people did not see her sacrifices but instead had only criticisms, well, it broke a piece off of her heart. The face I was seeing was a person crushed by lack of appreciation.
How often does this happen in the world of healthcare? I would venture to guess it happens on a regular basis. With Jenny in my mind, I began to think about the healthcare professionals I had put in my critical sights. I thought of "Betty," the transplant coordinator I wrote about in "Sick Girl Speaks!" Betty was the one who told me to forget about a second transplant and prepare to die. When "Vicki" took her place and offered me a chance on the list, I immediately began to attack Betty for her lack of foresight, compassion and energy. I accused her of being lazy and of not caring about her patients.
Seeing Jenny's face made me think back to those criticisms and I had to ask myself if those things I believed about Betty were really true. I had to admit to myself that I could never know the reasons Betty did what she did and therefore, I could never know if my judgments of her motives and character had any merit whatsoever. I imagined Betty's face as she read my book and felt remorse. What if she believed what she told me and she thought she was doing the best thing she could by telling me the truth? What if I had crushed Betty with my lack of understanding and appreciation? What if I had been entirely unfair?
And so it is, my continued journey into transforming my perceptions of healthcare professionals. Because we all carry the banners of "us" and "them" in our current healthcare culture, making bold and hurtful statements like mine comes to many patients easily. Too often my caregivers appear as the enemy, especially when they deliver news I do not want to hear in a way I do not want to hear it.
So, to Betty and others, I apologize for my bold and possibly false assumptions. To Jenny, I thank you for letting me see the disappointment that comes when dedication meets disapproval. When I find myself blasting my doctor or my nurse in the future, I will think of Jenny's face first from now on.
Humans. I am finally seeing my providers as humans. How strange that I have accused them for so long of seeing me as an object, an "it", only to discover that I have been doing exactly the same thing myself.
Compulsive Positivism
I spend a lot of my time talking to healthcare professionals and students about offering "honesty when honesty is requested." I ask that they begin to consider that a person can find joy no matter the physical issues. I preach that they should give us patients more credit and not automatically assume we need coddling.
But, then, there I am talking to a fellow CF/Transplant buddy who is facing rapidly progressing chronic rejection and I can't stop sugar-coating, pitying and coddling without provocation. My mouth is spouting some dramatic declarations like "maybe this is the worst of it and things will get better from here" and the back of my mind is yelling "will you shut up? he doesn't need your half-baked reassurances!"
This person, Tom, was speaking to me in part because I have been to a similar place. I have had chronic and I have had to weigh my options while watching the important numbers on the pulmonary function tests drop and drop some more. Tom didn't want sugar, he wanted truth from someone who has been there and could talk about the hard stuff most people would run away from. But, in my own way, I ran away too. I just couldn't stop with the platitudes.
What happened to me? Why was I powerless over my compulsive positivism? What is it about human nature or this culture we live in that is so firmly embedded in our DNA that even when we want to "get real" we somehow find our mouths filled with sugar, telling tales of lightness while standing in the middle of darkness?
I am sorry, Tom. I feel I let you down. You asked me for an honest ear and instead I bulldozed over you when you tell the truth of your anger, your fears and the reality of your physical body. Instead I offered up inane ideas like "maybe the tests are wrong" or "you feel that way now, but I'm sure you'll feel better tomorrow." What kind of friend am I? One that wasn't able to deliver on the promise of being a safe place to fall.
Where did this need to make it all better come from and how do I stop it?
But, then, there I am talking to a fellow CF/Transplant buddy who is facing rapidly progressing chronic rejection and I can't stop sugar-coating, pitying and coddling without provocation. My mouth is spouting some dramatic declarations like "maybe this is the worst of it and things will get better from here" and the back of my mind is yelling "will you shut up? he doesn't need your half-baked reassurances!"
This person, Tom, was speaking to me in part because I have been to a similar place. I have had chronic and I have had to weigh my options while watching the important numbers on the pulmonary function tests drop and drop some more. Tom didn't want sugar, he wanted truth from someone who has been there and could talk about the hard stuff most people would run away from. But, in my own way, I ran away too. I just couldn't stop with the platitudes.
What happened to me? Why was I powerless over my compulsive positivism? What is it about human nature or this culture we live in that is so firmly embedded in our DNA that even when we want to "get real" we somehow find our mouths filled with sugar, telling tales of lightness while standing in the middle of darkness?
I am sorry, Tom. I feel I let you down. You asked me for an honest ear and instead I bulldozed over you when you tell the truth of your anger, your fears and the reality of your physical body. Instead I offered up inane ideas like "maybe the tests are wrong" or "you feel that way now, but I'm sure you'll feel better tomorrow." What kind of friend am I? One that wasn't able to deliver on the promise of being a safe place to fall.
Where did this need to make it all better come from and how do I stop it?
Monday, October 13, 2008
Sick Girl Speaks Some More
I have toyed with the idea of writing another book. In fact, months ago I made a big announcement that I was "pregnant" with literary child. That book was a fine idea but one I failed to follow through on.
So here I am again. Deciding that I am ready for book # 2. Will it happen? I hope so.
"Sick Girl Speaks Some More; Building the Bridge in Our Medical Revolution"
This book will focus on things I have learned this year by poking my head behind "the other side of the curtain." There are things I know now that I didn't know a year ago. There are things in Sick Girl Speaks! that I would like to get more specific about or clarify. There are topics I didn't explore that I would like to now. There are some issues I feel more brave in talking about and some I feel more humbled by and would like to approach with more balance and compassion. Overall, I will continue to focus on patient advocacy and providing a window into the patient experience. In addition, I would like to find ways to remove the "us" versus "them" mentality from my work, and ideally the entire culture of healthcare, so that we can move forward as humans in this medical maze together.
I have learned so many things this year. I will learn many more next year. Maybe next year's book will be called "Sick Girl Speaks Again." Who knows? For now, I am aiming for a December deadline and a new book to be out in early 2009.
No promises but it sure makes my mouth water just thinking about it.
What do you think? Would you read another book like "Sick Girl Speaks!" ?
So here I am again. Deciding that I am ready for book # 2. Will it happen? I hope so.
"Sick Girl Speaks Some More; Building the Bridge in Our Medical Revolution"
This book will focus on things I have learned this year by poking my head behind "the other side of the curtain." There are things I know now that I didn't know a year ago. There are things in Sick Girl Speaks! that I would like to get more specific about or clarify. There are topics I didn't explore that I would like to now. There are some issues I feel more brave in talking about and some I feel more humbled by and would like to approach with more balance and compassion. Overall, I will continue to focus on patient advocacy and providing a window into the patient experience. In addition, I would like to find ways to remove the "us" versus "them" mentality from my work, and ideally the entire culture of healthcare, so that we can move forward as humans in this medical maze together.
I have learned so many things this year. I will learn many more next year. Maybe next year's book will be called "Sick Girl Speaks Again." Who knows? For now, I am aiming for a December deadline and a new book to be out in early 2009.
No promises but it sure makes my mouth water just thinking about it.
What do you think? Would you read another book like "Sick Girl Speaks!" ?
Sunday, October 12, 2008
LOL...or no?
This isn't really an illness related post. It's more a "I'm new to this whole grown up thing" post.
So, I know how to be formal and professional. Unlike many of the youngans today, I know how to send a proper email/letter with commas, capitalization and periods. Yea me.
When I write friends tho, (example) I enjoy the new abandon of all of the grammar formalities listed above. i write like this lol
So, here's the thing. Writing emails (as with writing letters...but they are fast letters) has drawbacks. The biggee is that they have the possibility of being misinterpreted. My tone might be simple and include straightforward questions but it could be read as rude or impatient. This is partly why the :) has become so popular. You know I'm writing a joke when the sentence is followed by a :)
So, I have more and more emails every day with people I barely know but really like. People who are booking me for things or helping me make important contacts. I use :) pretty quickly, like maybe 4th or 5th email into a conversation with a new person. I am finding myself really wanting to use LOL now.
Is it ever appropriate to use LOL in a professional email? If yes, in what circumstances? If no, what about :) ? Is that innapropriate?
Our world is changing. The younger generation doesn't even know what a cover letter is and people older than me don't know what btw means. I feel stuck in the middle of a transforming email culture.
Any protocols or are we left to our own ediquette devices now??
So, I know how to be formal and professional. Unlike many of the youngans today, I know how to send a proper email/letter with commas, capitalization and periods. Yea me.
When I write friends tho, (example) I enjoy the new abandon of all of the grammar formalities listed above. i write like this lol
So, here's the thing. Writing emails (as with writing letters...but they are fast letters) has drawbacks. The biggee is that they have the possibility of being misinterpreted. My tone might be simple and include straightforward questions but it could be read as rude or impatient. This is partly why the :) has become so popular. You know I'm writing a joke when the sentence is followed by a :)
So, I have more and more emails every day with people I barely know but really like. People who are booking me for things or helping me make important contacts. I use :) pretty quickly, like maybe 4th or 5th email into a conversation with a new person. I am finding myself really wanting to use LOL now.
Is it ever appropriate to use LOL in a professional email? If yes, in what circumstances? If no, what about :) ? Is that innapropriate?
Our world is changing. The younger generation doesn't even know what a cover letter is and people older than me don't know what btw means. I feel stuck in the middle of a transforming email culture.
Any protocols or are we left to our own ediquette devices now??
Tuesday, October 7, 2008
Right to Refuse or a Ruse?
In looking at Patient Advocacy, I have begun doing some research into the "Patient's Right to Refuse" and it has been both fascinating and scary.
Is there truly a right to refuse if doing so may result in "non-compliance" or "Against Medical Advice" being noted in your chart??
For those who don't know, being labeled "non-compliant" or being noted as going A.M.A. can result in a physician's refusal to treat you down the road. If it has been documented that you have not complied with medical regimens or medical orders, this gives the docs grounds to say that they won't do surgery on you or give you other kinds of therapy because you won't be responsible enough to care for yourself and follow orders.
While this makes sense on the one hand, it worries me to know that one day I might refuse a useless and unneeded MRI only to later find myself as labeled "non-compliant" or, worse, AMA. What if I chose to not have the elective stomach surgery the docs told me they wanted me to have? Would I then be non-compliant? AMA? I can't afford to take those risks but I also can't afford to follow every medical order blindly.
Here's the crazy part--these terms, non-compliance and AMA, have no real guidelines. They are arbitrary and rest in the hands of each healthcare professional to use at their discretion.
Is the Patient's Right to Refuse a right or a ruse? Is elective surgery elective when your doctor tells you to do it? Where are the lines? Why aren't there clear guidelines for doctors to follow? Why are these potentially powerful labels so ambiguous? Isn't that dangerous for us patients? Doesn't that leave us at the mercy of personalities and moods instead of protocols and thought-out boundaries?
Please weigh in on this topic!!
Is there truly a right to refuse if doing so may result in "non-compliance" or "Against Medical Advice" being noted in your chart??
For those who don't know, being labeled "non-compliant" or being noted as going A.M.A. can result in a physician's refusal to treat you down the road. If it has been documented that you have not complied with medical regimens or medical orders, this gives the docs grounds to say that they won't do surgery on you or give you other kinds of therapy because you won't be responsible enough to care for yourself and follow orders.
While this makes sense on the one hand, it worries me to know that one day I might refuse a useless and unneeded MRI only to later find myself as labeled "non-compliant" or, worse, AMA. What if I chose to not have the elective stomach surgery the docs told me they wanted me to have? Would I then be non-compliant? AMA? I can't afford to take those risks but I also can't afford to follow every medical order blindly.
Here's the crazy part--these terms, non-compliance and AMA, have no real guidelines. They are arbitrary and rest in the hands of each healthcare professional to use at their discretion.
Is the Patient's Right to Refuse a right or a ruse? Is elective surgery elective when your doctor tells you to do it? Where are the lines? Why aren't there clear guidelines for doctors to follow? Why are these potentially powerful labels so ambiguous? Isn't that dangerous for us patients? Doesn't that leave us at the mercy of personalities and moods instead of protocols and thought-out boundaries?
Please weigh in on this topic!!
Saturday, October 4, 2008
Once a Patient, Always a Patient
With all of the good fortune and running around I do, I must admit, these transplanted lungs let me forget from time to time that I was once a "sick girl." Now I'm more often the "speaks" than the "sick" in my blog title. That is good. That is wonderful. I don't know why I get to be so lucky to have moments, maybe days?, where I feel like a healthy person.
Having said that, there are times when being a "sick girl" floods back to me. Sometimes it comes in the form of an overwhelming memory. A smell, a story or being inside a hospital can transport me back to my sicker days in an instant.
And then there are the moments of worry--that internal evaluation and diagnosis that never seems to completely turn off for us frequent fliers. Often, this worry can be scary; "Do I have Chronic again?" "Am I getting sick, is it pneumonia?" "Is that pain in my back from my kidneys--are they finally giving out under the weight of these medications?" These are not uncommon thoughts to be running through my mind and certainly they are unsettling.
Sometimes, however, even I have to laugh at my internal evaluation and diagnosis.
I was driving down the highway the other day and I felt a cold sensation in my left hand. At that time, I weaning off of my blood pressure medicine and my thoughts immediately went to the connection between my left hand and my heart. I took my hand off of the steering wheel and the sensation went away so I decided the symptoms were positional. For the next few minutes, I experimented with my hand in various positions; above my head, on my lap, out the window etc. The only position that produced this symptom was on the steering wheel.
As I contemplated the symptoms of a heart attack and wondered if a positional cold sensation was a lesser known beginning stage to cardiac arrest, I looked at my dashboard. This was a hot day, the first in a week, and the air conditioning unit's fan was blowing directly onto my left hand. The "positional cold sensation" was the air conditioning--an external sensation, not internal!
I laughed all the way home. What a dummy, right? No. Not really. When you have been down the illness road, you never let go of the internal evaluation. When you want to be a proactive patient, you look for warning sides. When you love life, you want to protect it. And sometimes, during your investigations, you make the kind of error you are happy to make when the air conditioning fan is blowing on your left hand.
Being a patient is strange sometimes!
Do you have any stories of illness investigations like this one? Do you have other stories in which it turned out to be something and you caught it by being aware? I would love to share stories like these with professionals and students to help them understand the internal evaluation process that becomes second nature to those of us with illness.
Please share your stories with me and I will share them with those who need to understand what life is like when one is Once a Patient, Always a Patient.
Wednesday, October 1, 2008
Tuesday, September 30, 2008
A Confident Necklace
A few months back, I bought a big, chunky bright yellow necklace (shown above) as a part of a costume. Some may say it's ugly, but I like my "Target Special" plastic adornment. Come to think of it, it looks like a Betty Rubble necklace...sorry, I digress.
So, I have often held this necklace in my hand and pondered wearing it out of the house. Until today, I have always put it down. It just felt too big, too bright, too scary. Would people think I was a fashion disaster if I wore it? Would people secretly snicker behind my back after I passed by? Would I look like a fool in my Betty Rubble necklace?
Today, I wore the necklace out of the house. To a meeting, to the store, to the post office, to work and to another meeting. A few people made comments like "that's a necklace!" Compliment or snide comment? Who knows. But here's the fun part...I didn't care.
Why is it that today was the day when I was feeling confident enough to wear the bright boulders around my neck? Why did I have enough self-confidence today to do what I wanted with little to no worry about other people's opinions? Why today?
As I asked myself that question, it occurred to me that I have spent years of my life talking about balance. Finding peace with the roller coaster of life. Understanding that sometimes things are going your way and other days you can barely find your way out of your own front door.
Why, then, have I left my own self-confidence out of this equation? Why must I strive for balance, acceptance and understanding about all of life's cycles but not my own level of confidence? Why have I always assumed that confidence is something that should be static, steady, unchanging? What in life is static, steady and unchanging anyway? Where did I get this idea--some guru? Myself? Oprah?
I don't know where I got the idea that self-confidence should never waiver but I am now rethinking this idea. My necklace has proven to me that my level of self-confidence varies--should I A. be upset about this fact or B. just accept it? I'm going to have to pick B.
Thank you big, yellow, chunky Target Betty Rubble necklace. You made me rethink a thought I never even realized I had. I promise, I won't judge myself on the days where you just look intimidating. At the same time, I will enjoy the days when I am confident enough to wear you without fear!
Lessons come from amazing places, don't they?
Tuesday, September 23, 2008
Confession
I forgot I had a blog. Seriously. Sadly. For real.
I have been so busy the nagging thought in the corner of my mind that tells me to blog just up and went on vacation.
Working on 2 big grants for next year in between speaking engagements and other projects. Oh, yea, and trying to have a life and spend time with hubs. Haven't even seen my family in weeks! (Unless you count the ones who show up at my workshops:)
Not complaining, just explaining.
I am working really hard to not be stressed by all that is going on. I am trying that "stay in the now" thing and so far, I'm doing pretty well. I am trying not to say to myself "I am so busy" but instead just focus on one task at a time. That's all I capable of anyway so why bother projecting myself into the future and worrying about it now. How Zen of me, huh?
Anyhoo. Sorry I forgot about my blog for a minute. I'll be back in full force after this week. (I hope)
In the meantime, I provided you with an awww photo above. Two of our friends came to visit and brought their Greyhound, Twilight. She is so sweet and, after some snarls and growls, Emily decided she was sweet too. I think Emily actually recognized the family resemblance! Emma being a Whippet, she was a miniature version of Twilight and would often walk back and forth underneath Twilight's belly. It cracked us up. Hence, the photo above.
With love and Gratitude!
Thursday, September 18, 2008
Love Hurts!
So, I tried out the old stand up comedy thing last week. Ouchy. Me not so goody.
It's way harder than it looks...and it looks really hard to me! I think some people are just born with that kind of "set up, stick a joke" brain. I am not, apparently.
Don't worry, I'm not mad at myself. I know there's a possibility I will get better with practice. There's also a possibility that I will learn a productive lesson about my weaknesses! That would be ok too. Right now, I'm just a wide-eyed child in a world of comedy wonder where the people are 10 feet tall and I have no idea if I will ever grow up that big. It's a real fish out of water thing and I like it. It's shaking up my insides.
So, I go again tonight. Last week, I didn't really do much with the health jokes. Mostly I just went for the obvious and made fun of my town, the people in it etc. Tonight, I'm going in with some health jokes. I may have someone tape it. Not because I'm gonna rock but because I think it would be entertaining to watch a non-comedian try to do comedy. Or would it just be painful??
Either way, I haven't decided if I'm gonna let someone tape it yet. If I do, I may just upload it to the blog tomorrow. See, that's how much I love you guys...
Until then, face your fears and do something that makes you want to puke. (Misery loves company, and I'd like some right about now!)
And speaking of videos, I now have a Mac and am attempting to edit my 2 talks "Life in the Death Bed" and "The Permanent Me". I'll let you know when I get those up and on my website.
XXOO
:)
It's way harder than it looks...and it looks really hard to me! I think some people are just born with that kind of "set up, stick a joke" brain. I am not, apparently.
Don't worry, I'm not mad at myself. I know there's a possibility I will get better with practice. There's also a possibility that I will learn a productive lesson about my weaknesses! That would be ok too. Right now, I'm just a wide-eyed child in a world of comedy wonder where the people are 10 feet tall and I have no idea if I will ever grow up that big. It's a real fish out of water thing and I like it. It's shaking up my insides.
So, I go again tonight. Last week, I didn't really do much with the health jokes. Mostly I just went for the obvious and made fun of my town, the people in it etc. Tonight, I'm going in with some health jokes. I may have someone tape it. Not because I'm gonna rock but because I think it would be entertaining to watch a non-comedian try to do comedy. Or would it just be painful??
Either way, I haven't decided if I'm gonna let someone tape it yet. If I do, I may just upload it to the blog tomorrow. See, that's how much I love you guys...
Until then, face your fears and do something that makes you want to puke. (Misery loves company, and I'd like some right about now!)
And speaking of videos, I now have a Mac and am attempting to edit my 2 talks "Life in the Death Bed" and "The Permanent Me". I'll let you know when I get those up and on my website.
XXOO
:)
Thursday, September 11, 2008
An Old Love Made Anew
I mentioned in my post about "The Permanent Me" (which is now on sale on DVD at CFRI.org) that I was beginning to explore the value of using my past actor training to make my talks a little more dramatic and hopefully more powerful. Well, I have held true to that promise and man, has it been a blast!
Last week I teamed up with an awesome Duke Palliative Care Doc, Tony Galanos, and we did a real live improv for about 100 nurses. We were the entertainment for the night so it had to be fun but we couldn't miss the opportunity to convey some messages. Dr. G and I were super nervous (OK, I was, you'd have to ask him how nervous he was feeling) because we had never rehearsed and we had no idea if we were about to b.o.m.b. The crowd was great and we had them rolling with our silly improvs about life in the medical system. BUT, at the same time, we took pauses in between each improv to check in with the audience and see if they learned anything from watching the improv. I was thrilled to see that we weren't just having fun--they gleamed some really amazing lessons from the exercises. Win, Win!!!
I have really been riding that wave of joy for a week. It felt so great on so many levels--we had fun, we had a message and...maybe best of all, I was collegues with a doctor. That huge patient/physician barrier had to be torn down so we could work together as human beings. The audience was struck by it, this rare sighting of a doctor and patient with no sense of "superior" and "inferior." I had to pinch myself to make sure it was real. I'd say, at the risk of exagerating, it was magical. Thank you Sandi for booking us! Thank you Dr. G for going on that wild ride with me and making it so much fun!!!
This has taken me in two directions. 1. I am hungry for more opportunites like this--to improv, to act and to bring my messages to the right people through fun and humor. 2. It has made me more passionate about openeing the curtains and humanizing mdicine, as I talked about in a previous post. A friend told me recently that Quakers (I hope that's right) do not have titles such as "Sir" or "Maam" and they do that because they do not see one person as being any better or lesser than the next. These titles alone put us in positions that take us out of our own humanity. Add to that all that we are taught about the titles and you have...well, me. I'm a good example of a perfectly competent human being who has believed for her whole adult life that she is inferior without any alphabet soup after my name. I deny what I know and replace it with the opinions of others because I see them as better than me. I do not recognize my worth because I let others tell me what I am worth based on our society's labels.
There have been many gifts of this work I am now doing. One of them is in reassessing the ideas I have about my value in relation to those around me. The improv with Dr. G was a huge, huge step on this journey to walk beside people, not behind or in front of them. I am so grateful.
In addition, I have challenged myself creatively. Tonight, I start my first stand up comedy class. I feel queasy every time I mention it! I do not see myself as a funny person. Certainly not the kind of funny where you stand alone on a stage telling joke after joke. Ah, I feel sicker.
So why I am I doing it? I have had a dream for years to write my own one woman show. I want it to be about the illness journey but I want it to be universal enough and funny enough that it's not just for patients or professionals. I want to reach everybody. Gulp. So, tonight I have to present 2-3 minutes worth of material. I am terrified and excited. If it goes ok, if it's not just the worst thing anyone has ever seen, I am going to video it in its developement and upload those videos here. We'll see!!!
I hope you all have a wonderful week and do something that makes you queasy too.
With Gratitude!
Tiff
Last week I teamed up with an awesome Duke Palliative Care Doc, Tony Galanos, and we did a real live improv for about 100 nurses. We were the entertainment for the night so it had to be fun but we couldn't miss the opportunity to convey some messages. Dr. G and I were super nervous (OK, I was, you'd have to ask him how nervous he was feeling) because we had never rehearsed and we had no idea if we were about to b.o.m.b. The crowd was great and we had them rolling with our silly improvs about life in the medical system. BUT, at the same time, we took pauses in between each improv to check in with the audience and see if they learned anything from watching the improv. I was thrilled to see that we weren't just having fun--they gleamed some really amazing lessons from the exercises. Win, Win!!!
I have really been riding that wave of joy for a week. It felt so great on so many levels--we had fun, we had a message and...maybe best of all, I was collegues with a doctor. That huge patient/physician barrier had to be torn down so we could work together as human beings. The audience was struck by it, this rare sighting of a doctor and patient with no sense of "superior" and "inferior." I had to pinch myself to make sure it was real. I'd say, at the risk of exagerating, it was magical. Thank you Sandi for booking us! Thank you Dr. G for going on that wild ride with me and making it so much fun!!!
This has taken me in two directions. 1. I am hungry for more opportunites like this--to improv, to act and to bring my messages to the right people through fun and humor. 2. It has made me more passionate about openeing the curtains and humanizing mdicine, as I talked about in a previous post. A friend told me recently that Quakers (I hope that's right) do not have titles such as "Sir" or "Maam" and they do that because they do not see one person as being any better or lesser than the next. These titles alone put us in positions that take us out of our own humanity. Add to that all that we are taught about the titles and you have...well, me. I'm a good example of a perfectly competent human being who has believed for her whole adult life that she is inferior without any alphabet soup after my name. I deny what I know and replace it with the opinions of others because I see them as better than me. I do not recognize my worth because I let others tell me what I am worth based on our society's labels.
There have been many gifts of this work I am now doing. One of them is in reassessing the ideas I have about my value in relation to those around me. The improv with Dr. G was a huge, huge step on this journey to walk beside people, not behind or in front of them. I am so grateful.
In addition, I have challenged myself creatively. Tonight, I start my first stand up comedy class. I feel queasy every time I mention it! I do not see myself as a funny person. Certainly not the kind of funny where you stand alone on a stage telling joke after joke. Ah, I feel sicker.
So why I am I doing it? I have had a dream for years to write my own one woman show. I want it to be about the illness journey but I want it to be universal enough and funny enough that it's not just for patients or professionals. I want to reach everybody. Gulp. So, tonight I have to present 2-3 minutes worth of material. I am terrified and excited. If it goes ok, if it's not just the worst thing anyone has ever seen, I am going to video it in its developement and upload those videos here. We'll see!!!
I hope you all have a wonderful week and do something that makes you queasy too.
With Gratitude!
Tiff
Sunday, September 7, 2008
A Three-Legged Table
Pictured above: B, left and Emily, right at our commitment ceremony.Last week, my step-dog passed away. He was an old boy...171/2. He was a big dog and by the time I met him 3 years ago, he was already well into his geriatric years.
This dog, B, did not play with toys. He did not give wet kisses. This dog did not sleep in the bed or cuddle close on the couch.
He was not my dog until 3 years ago and I feared his loss would not be painful enough for me--how would my husband feel if I did not properly mourn the loss of his faithful companion?
Last week we lost B and now I find myself feeling lost too. I did not know until he was gone that he filled the entire house with his life-force. I did not know that a dog with no toys, who rarely kissed or snuggled, could take up so much space.
I did not know how much I loved my step-dog until I felt what I feel now as I miss him. The world looks different without my step-dog, B. It is quiet and lacks structure. Our family was once a four legged table. Me, my hubbs and our two dogs. Now, we are a three legged table and I feel unstable. There is no replacement leg for our family table and we are learning how to live life leaning to the side.
There was never a dog like B, I can assure you. There will never be a boy like B again. I am only happy to have had 3 years with such an extraordinary dog. He is missed.
Tuesday, August 26, 2008
Video Link
Hi All,
Here is a link to CF Tube where I was interviewed by the wonderful Sarah at cysticfibrosis.com
This was an interview we did at the recent CFRI Conference in California.
Can you say motor mouth?? :)
The folks at CFRI and cysticfibrosis.com are wonderful. A sincere thank you to everyone at both organizations!!!
Here is a link to CF Tube where I was interviewed by the wonderful Sarah at cysticfibrosis.com
This was an interview we did at the recent CFRI Conference in California.
Can you say motor mouth?? :)
The folks at CFRI and cysticfibrosis.com are wonderful. A sincere thank you to everyone at both organizations!!!
Monday, August 25, 2008
Changing Perspectives
As I have mentioned before, one of the most exciting parts of this year has been speaking to healthcare professionals and students. I suppose, after the last 8 months of peeking behind the curtain, I have changed some of my perspectives.
I see the kids, and I now see they are kids, in med school and I think about myself at that age. What were you doing at 23, 24? I was thinking about boys and trying to figure out how to live without mom's cooking. And what are these kids doing? Facing a mountain of school work and trying to stumble around the floors without killing anybody or making a stupid mistake. At one of my lectures I was listening to the teacher reprimand the class for not getting homework in on time. This is not the vision in my head when I think of my intern or resident. The white coat can be so convincing, can't it?
I feel for these kids. They have a huge amount of information to digest while working with patients and being the low man on the totem poll on the floor. Guess how much they get taught about having compassionate conversations? Guess how much they learn about what it's like to be a patient? Guess how much they get to practice delivering bad news before they actually have to do it?
You guessed it: rarely to never. I am often told by students (of all kinds) that my lectures are the extent of their education on patient perspective! How could that be?
When I look into the audience, I see some people who look grounded and some who are older and have wisdom written on their face. Occasionally, I am approached by a med student, nursing student, etc who has survived an illness and really 'gets it'. I have had a few who told me they have had to "tune me out or they would cry"--they didn't want their peers to know they had an illness. Mostly, I see young girls and boys who haven't a clue. They have lived "normal" lives filled with sports and clubs. They have not had an illness and probably have never been very close to someone who has. They may have never even seen death before.
And now, here we are, filling their minds with chemistry, biology and anatomy. There is a big piece missing--how do you interact with patients? You can't interact effectively until you feel comfortable so how do you feel comfortable talking to patients? You can't feel comfortable until you have a framework for what it feels like to be in a similar circumstance. Where do you find this framework? Without this framework, you are lost, say stupid things, and grow to dread having a conversation.
Where this discomfort leads is up to the individual. Some work at it, on their own time, and become compassionate and skilled caregivers. Some decide the discomfort is no worth the effort and go on the path of the stereotypical doctor--cold and very cerebral.
But is that their fault? Would they have taken a different path if more time in school was dedicated to cultivating these incredibly intimate human moments that health professionals are part of every day?
And my new-found sympathy goes even farther. I think us patients are often too hard on doctors and nurses. We pick them apart. "Did you hear that? Why did he/she just say that? Wasn't that rude? Can you believe he/she just said that to me?"
Guilty. I've heard people do it and I've done it myself. There is almost a satisfaction out of proving that your healthcare provider is a jerk. Why? Do we need to tear them down because we feel inferior. Are we projecting our anger about the illness onto the provider?
We all say stupid stuff sometimes. We all say things that come out wrong. We all say things we didn't mean and regret it later. Why, then, when a doc or nurse who is usually kind and considerate says something a bit out of line does it become a criminal offense?
And then, here's the biggee: They actually can't figure things out sometimes. Sometimes they are baffled by illnesses and sometimes they are baffled by people.
Sometimes, they want to help us but they can't. They are limited in their scope of knowledge. Sometimes, they want to help us but they can't figure out US out, the way we act, talk, the way we feel about things. We can be a bigger mystery than our body!
So, here's what I'm saying--we have unrealistic expectations about our healthcare providers. We don't cut them slack for being falliable humans. So why is that?
Culture.
This is part of the breeding in school. Doctors are the quintessential "Fake it Until You Make It." They have never placed a central line but it is thier job to reassure us and act as if they have everything completely under control. They are terrified of breaking the news but they have to act calm and cool. They don't know as much about our illness as we do but they have to present themselves as the authority. Why? Training.
I dream of the day when the curtain is pulled back and we will understand each other as humans and partners. Not authority and pittiful case. I dream of the day schools teach patient perspective and the art of communication and consider it essential for good care.
Recently, I had a healthcare provider giving me my PFTs (Pulmonary Function Test). She was new, it was obvious. I have been doing this since I was a child. You can tell who is new and who is uncomfortable. She made me do all of these useless things while forgetting the important stuff like my nose clip. She was very invested in presenting herself as an authority and I was amused. I was able to step out of myself at a time when I would normally be extremely annoyed. I saw her as scared and I felt compassion for her and amusement at her need for silly rules.
It felt good to feel for her instead of hating her in my mind. It felt good to defend my doctor when someone was telling me a story about how stupid he is. It feels good to open the curtain and find the similarities, not the differences. It feels amazing to see my providors as peers, not superhuman. I feel connected to them, I feel compassion for them, I feel in awe of them. They are me but with a different job description.
Us patients put professionals on a pedestool. Let's take them down from there--it only causes resentment and disapointment.
Professionals, take a chance on us and let's change the culture of healthcare.
In the meantime, I am so happy I got a look on the other side of the curtain. I like my healthcare better when it's humanized.
XXOO
With Gratitude!
I see the kids, and I now see they are kids, in med school and I think about myself at that age. What were you doing at 23, 24? I was thinking about boys and trying to figure out how to live without mom's cooking. And what are these kids doing? Facing a mountain of school work and trying to stumble around the floors without killing anybody or making a stupid mistake. At one of my lectures I was listening to the teacher reprimand the class for not getting homework in on time. This is not the vision in my head when I think of my intern or resident. The white coat can be so convincing, can't it?
I feel for these kids. They have a huge amount of information to digest while working with patients and being the low man on the totem poll on the floor. Guess how much they get taught about having compassionate conversations? Guess how much they learn about what it's like to be a patient? Guess how much they get to practice delivering bad news before they actually have to do it?
You guessed it: rarely to never. I am often told by students (of all kinds) that my lectures are the extent of their education on patient perspective! How could that be?
When I look into the audience, I see some people who look grounded and some who are older and have wisdom written on their face. Occasionally, I am approached by a med student, nursing student, etc who has survived an illness and really 'gets it'. I have had a few who told me they have had to "tune me out or they would cry"--they didn't want their peers to know they had an illness. Mostly, I see young girls and boys who haven't a clue. They have lived "normal" lives filled with sports and clubs. They have not had an illness and probably have never been very close to someone who has. They may have never even seen death before.
And now, here we are, filling their minds with chemistry, biology and anatomy. There is a big piece missing--how do you interact with patients? You can't interact effectively until you feel comfortable so how do you feel comfortable talking to patients? You can't feel comfortable until you have a framework for what it feels like to be in a similar circumstance. Where do you find this framework? Without this framework, you are lost, say stupid things, and grow to dread having a conversation.
Where this discomfort leads is up to the individual. Some work at it, on their own time, and become compassionate and skilled caregivers. Some decide the discomfort is no worth the effort and go on the path of the stereotypical doctor--cold and very cerebral.
But is that their fault? Would they have taken a different path if more time in school was dedicated to cultivating these incredibly intimate human moments that health professionals are part of every day?
And my new-found sympathy goes even farther. I think us patients are often too hard on doctors and nurses. We pick them apart. "Did you hear that? Why did he/she just say that? Wasn't that rude? Can you believe he/she just said that to me?"
Guilty. I've heard people do it and I've done it myself. There is almost a satisfaction out of proving that your healthcare provider is a jerk. Why? Do we need to tear them down because we feel inferior. Are we projecting our anger about the illness onto the provider?
We all say stupid stuff sometimes. We all say things that come out wrong. We all say things we didn't mean and regret it later. Why, then, when a doc or nurse who is usually kind and considerate says something a bit out of line does it become a criminal offense?
And then, here's the biggee: They actually can't figure things out sometimes. Sometimes they are baffled by illnesses and sometimes they are baffled by people.
Sometimes, they want to help us but they can't. They are limited in their scope of knowledge. Sometimes, they want to help us but they can't figure out US out, the way we act, talk, the way we feel about things. We can be a bigger mystery than our body!
So, here's what I'm saying--we have unrealistic expectations about our healthcare providers. We don't cut them slack for being falliable humans. So why is that?
Culture.
This is part of the breeding in school. Doctors are the quintessential "Fake it Until You Make It." They have never placed a central line but it is thier job to reassure us and act as if they have everything completely under control. They are terrified of breaking the news but they have to act calm and cool. They don't know as much about our illness as we do but they have to present themselves as the authority. Why? Training.
I dream of the day when the curtain is pulled back and we will understand each other as humans and partners. Not authority and pittiful case. I dream of the day schools teach patient perspective and the art of communication and consider it essential for good care.
Recently, I had a healthcare provider giving me my PFTs (Pulmonary Function Test). She was new, it was obvious. I have been doing this since I was a child. You can tell who is new and who is uncomfortable. She made me do all of these useless things while forgetting the important stuff like my nose clip. She was very invested in presenting herself as an authority and I was amused. I was able to step out of myself at a time when I would normally be extremely annoyed. I saw her as scared and I felt compassion for her and amusement at her need for silly rules.
It felt good to feel for her instead of hating her in my mind. It felt good to defend my doctor when someone was telling me a story about how stupid he is. It feels good to open the curtain and find the similarities, not the differences. It feels amazing to see my providors as peers, not superhuman. I feel connected to them, I feel compassion for them, I feel in awe of them. They are me but with a different job description.
Us patients put professionals on a pedestool. Let's take them down from there--it only causes resentment and disapointment.
Professionals, take a chance on us and let's change the culture of healthcare.
In the meantime, I am so happy I got a look on the other side of the curtain. I like my healthcare better when it's humanized.
XXOO
With Gratitude!
Friday, August 15, 2008
A General Update
Hi all!
I got back from California a week ago and I am just now feeling somewhat like a human being! Boy, that trip took it out of me!!
I did my one woman show-like thing, "The Permanent Me" on Friday night, August 1, and it went over well. There were a few major technical glitches but nothing that brought the show to a screeching halt. I was super nervous before I got on stage--the computer seemed like such a major unpredictable variable and that made me more nervous than anything.
For those who don't know what I'm talking about, this show contained over 200 PowerPoint slides, each with it's own sound cue. Most of which I recorded myself as my British "higher self"! The idea was that I was having a conversation with my higher self at each stage of development--junior high, high school, pre-transplant, and post-transplant.
I am so proud that Dr. Julie Desch, a physician, mother and wellness coach WITH CF, wrote about "The Permanent Me" on her blog: sick and happy. She amazing and I am honored that she kindly wrote this:
"Tiffany Christensen, author of “Sick Girl Speaks!” gave an amazing presentation at the start of this weekend’s conference in Redwood City, California. As she chronicled in a deeply moving and occasionally hilarious one woman show, having CF can be an incredible tool to use when “finding the permanent me.” Tiffany embodies positive psychology. It is people like her that I want to learn from, and write about in these posts. "
Wow. Thanks Julie!!! Likewise.
Doing this presentation has inspired me to infuse more of my theater background into my talks. Not all of them will have costumes and talking computers, of course, but dramatizations can be powerful. With my acting background, I have an opportunity to use those skills to make my talks more interesting. Until now, I have shied away from that but I shouldn't. It takes guts to go out on a limb like that and I need to trust myself to pull it off.
After the conference, I went to the CF Adult Retreat. Like Vegas, what happen at retreat stays at retreat so I can't go into detail!! :) Suffice to say, it was everything you could hope for--big highs, big cathartic lows and good, amazing new friends. I never thought this would be my kind of thing but I am so hooked--I can't wait to go back next year. For all my CF readers, please consider going next year. It is truly life-changing and uplifting. They have cross-infection safety issues down to a science and I felt very secure all week, even as an immune-suppressed chick.
Things continue to go well. I have two big grants with Project Compassion in the pipeline for next year. Please keep your fingers crossed for those!! I continue to book talks--mostly "Life in the Death Bed." That one has taken off and I couldn't be happier. I love giving this talk!!! Soon, I will be offering a mini-documentary on my website which features me doing "Life in the Death bed" at a Hospice in Pennsylvania. Keep an eye out for that DVD as well as "The Permanent Me" DVD which should be available in the next few weeks.
I am thrilled to say that I was invited this week to do "Life in the Death Bed" at John's Hopkins Hospital! Wow! What an honor!!!
Ok, that's all for now. Thank you for your continued support!!
Wishing you all the best for the remainder of the summer!!!
I got back from California a week ago and I am just now feeling somewhat like a human being! Boy, that trip took it out of me!!
I did my one woman show-like thing, "The Permanent Me" on Friday night, August 1, and it went over well. There were a few major technical glitches but nothing that brought the show to a screeching halt. I was super nervous before I got on stage--the computer seemed like such a major unpredictable variable and that made me more nervous than anything.
For those who don't know what I'm talking about, this show contained over 200 PowerPoint slides, each with it's own sound cue. Most of which I recorded myself as my British "higher self"! The idea was that I was having a conversation with my higher self at each stage of development--junior high, high school, pre-transplant, and post-transplant.
I am so proud that Dr. Julie Desch, a physician, mother and wellness coach WITH CF, wrote about "The Permanent Me" on her blog: sick and happy. She amazing and I am honored that she kindly wrote this:
"Tiffany Christensen, author of “Sick Girl Speaks!” gave an amazing presentation at the start of this weekend’s conference in Redwood City, California. As she chronicled in a deeply moving and occasionally hilarious one woman show, having CF can be an incredible tool to use when “finding the permanent me.” Tiffany embodies positive psychology. It is people like her that I want to learn from, and write about in these posts. "
Wow. Thanks Julie!!! Likewise.
Doing this presentation has inspired me to infuse more of my theater background into my talks. Not all of them will have costumes and talking computers, of course, but dramatizations can be powerful. With my acting background, I have an opportunity to use those skills to make my talks more interesting. Until now, I have shied away from that but I shouldn't. It takes guts to go out on a limb like that and I need to trust myself to pull it off.
After the conference, I went to the CF Adult Retreat. Like Vegas, what happen at retreat stays at retreat so I can't go into detail!! :) Suffice to say, it was everything you could hope for--big highs, big cathartic lows and good, amazing new friends. I never thought this would be my kind of thing but I am so hooked--I can't wait to go back next year. For all my CF readers, please consider going next year. It is truly life-changing and uplifting. They have cross-infection safety issues down to a science and I felt very secure all week, even as an immune-suppressed chick.
Things continue to go well. I have two big grants with Project Compassion in the pipeline for next year. Please keep your fingers crossed for those!! I continue to book talks--mostly "Life in the Death Bed." That one has taken off and I couldn't be happier. I love giving this talk!!! Soon, I will be offering a mini-documentary on my website which features me doing "Life in the Death bed" at a Hospice in Pennsylvania. Keep an eye out for that DVD as well as "The Permanent Me" DVD which should be available in the next few weeks.
I am thrilled to say that I was invited this week to do "Life in the Death Bed" at John's Hopkins Hospital! Wow! What an honor!!!
Ok, that's all for now. Thank you for your continued support!!
Wishing you all the best for the remainder of the summer!!!
Friday, August 1, 2008
Warning: Level Orange
Here I am in sunny and wonderful California! Yay! I love it here so much. Tonight is my "One Woman Show" at the CFRI Conference. I'm not going to lie--I'm nervous. I'll let you know how it goes.
Yesterday morning (at 5:00 am!) I was making my way through airport security. At the beginning of the long line of sleepy passengers (boarding pass and ID ready) was a large sign.
I read that sign and looked around. Nobody batted an eye. Nobody recoiled in fear and decided not to board the plane or leave the building. Nobody changed their plans because there was a strong possibility of a terrorist attack.
It dawned on me that this mentality is very similar to living with a chronic illness. You have a large sign in front of you every day that reads:
Yesterday morning (at 5:00 am!) I was making my way through airport security. At the beginning of the long line of sleepy passengers (boarding pass and ID ready) was a large sign.
Warning:
Level Orange
Strong Possibility of a Terrorist Attack
Level Orange
Strong Possibility of a Terrorist Attack
I read that sign and looked around. Nobody batted an eye. Nobody recoiled in fear and decided not to board the plane or leave the building. Nobody changed their plans because there was a strong possibility of a terrorist attack.
It dawned on me that this mentality is very similar to living with a chronic illness. You have a large sign in front of you every day that reads:
Warning:
Level Orange
Strong Possibility of Catastrophic Illness
Level Orange
Strong Possibility of Catastrophic Illness
Those of us with chronic conditions know that at any moment we may be attacked by bacteria, inflammation, cancer...the list is endless. For me the terrorist at the top of the list is chronic rejection. But what should you do about it? Should you drop everything and leave the building, hoping you can find a place to hide? Illness can find you no matter where you go, there is no sense in running.
So, like the passengers at the airport, we read the sign and continue going where we want to go and doing what we want to do. We know that we live under a level orange warning but there is no reason to dwell on it. If and when the illness terrorist arrives, we will deal with it then and hope that the damage will not be too significant.
I, for one, will not let a level orange stop me from flying. Will you?
So, like the passengers at the airport, we read the sign and continue going where we want to go and doing what we want to do. We know that we live under a level orange warning but there is no reason to dwell on it. If and when the illness terrorist arrives, we will deal with it then and hope that the damage will not be too significant.
I, for one, will not let a level orange stop me from flying. Will you?
Sunday, July 27, 2008
Re-Entering the Atmosphere
Anyone who knows me knows that I am addicted to two things, coffee and television. If you read this blog, you will know, I have recently weaned myself off of coffee. And if you live with me (hmp, hubby) you know I cheat sometimes. But I drink waaay less than I used to.
BUT! Unlike coffee, television is not something I have any interest in giving up. Some people drink a beer at the end of the day to relax. Some people take a walk to wind down. Some people cook a big meal to chill out after work. I watch TV. If I'm sad, if I'm bored, if I want to relax or get out of my head, I turn to my old pal, the TV.
I was reminded this weekend of the time immediately after transplant (both of them) when I turned my television off. I would try to watch it but it was unbearable. The silly banter, the mindless "probing hot topics," the unfunny jokes and the actors taking themselves way too seriously...I just couldn't stand it. TV ceased to be entertaining, instead it was maddening.
There is a time after a major medical trauma (or other life event) in which the way we live our lives suddenly seems very superficial. There is a need to express and discuss a deeper reality of life--the realities that come when you face death and are trying to re-acclimate to life on earth. The world has changed colors, and as our rocketship barrels towards the earth's surface our life is unrecognizable. To not discuss the descent to earth would be like not aknowledging a stick in the eye.
Our society is not very good at accommodating those who are trying to re-enter the atmosphere. I remember the December after my first transplant, I accompanied a friend to a work Christmas party. The usual "What do you do?" and "Where are you from" and "How do you know so-and-so" ensued. I just couldn't play the game. As much as I wanted to be superficial, I just couldn't and I would answer the questions honestly. "I am not working right now, I am recovering from a lung transplant" was the beginning of the end of my new conversation. The party-goers were clearly not expecting that response and they compensated for my uncomfortable honesty with an even broader, faker smile. They did the best they could to bypass any more transplant conversation and made excuses to leave me standing alone with my eggnog.
I'm not bashing people. I understand this was not normal party conversation and why they would want to exit stage left. We just aren't trained for this type of honesty in our culture.
What I do want people to understand, though, is the dilemma that faces those of us who are attempting atmosphere re-entry after a major medical intervention. We have two choices: watch TV or turn it off. Grin and grit our teeth through what feels like an unbearably phony conversation or keep it real. For me, the choice was simple. I had to speak my truth--not out of some superiority or judgement--but because it was all that seemed to matter at that time. Not talking about my transplant would make me disapear.
So, if you find yourself at a party and you spot someone alone with thier eggnog, take a moment to pause. Perhaps you have spotted someone who is attempting to re-enter the atmosphere after a medical problem, divorce, death of a loved one or any other life event that is too real to ignore. If you're brave, maybe you can walk up to them and ask "What do you do?" and expect to hear the truth as it sounds when someone has turned off the TV.
Saturday, July 26, 2008
Thank You
I have received many very warm and very celebratory emails and comments regarding my 35th birthday. Because my mother's "write a thank you note" lessons did not stick, I tend to be very slow and disorganized about responding to such wonderful well wishes.
I want to sincerely thank, from the bottom of my being, everyone who sent me Happy Birthday wishes. It is the people in my life that make 35 so amazing (that and the not being dead part). So, thank you thank you thank you for being a part of my life and for being kind enough to care that this old gal just racked up another year of living.
I have added the picture of the Butterfly Girl because it couldn't express how I feel more if I had drawn it myself. (I bought it off of istockphoto.com--very cool site) Butterflies are the symbol of lung transplant for a good reason--we spend years locked inside our illness cocoons, waiting for the day we can fly. When the donor lungs come along, we begin the slow process of breaking through that cocoon and, when we do, we have emerged transformed. For the first time in my life, I could really fly. Today, I am the Butterfly Girl with arms extended to the heavens with gratitude and overwhelming joy. I am flying freely and often now and I am so happy you are with me on this leg of the journey.
With all my love and gratitude...
Opinions, please!
Hi all!
Boy, things are buzzing here. Busy busy busy. I am so excited about the work I've been doing and equally excited about some ideas I have for the future. They are top secret but, hopefully, I can tell you by the end of the year. Oooooo. Aren't I so mysterious? :)
So, I got a spur of the moment yearning to change my website. I'd love your feedback. It is very different than before. What do you think? Help! www.sickgirlspeaks.com
Sadly, that's all I have in my blogging bag of big ideas for now. I know I have been slacking again. Sometimes, I just don't have much to say!
Hope you're having a happy weekend!
Boy, things are buzzing here. Busy busy busy. I am so excited about the work I've been doing and equally excited about some ideas I have for the future. They are top secret but, hopefully, I can tell you by the end of the year. Oooooo. Aren't I so mysterious? :)
So, I got a spur of the moment yearning to change my website. I'd love your feedback. It is very different than before. What do you think? Help! www.sickgirlspeaks.com
Sadly, that's all I have in my blogging bag of big ideas for now. I know I have been slacking again. Sometimes, I just don't have much to say!
Hope you're having a happy weekend!
Wednesday, July 16, 2008
35: A perfectly imperfect life.
Tomorrow I will be 35. I never thought I would make it to 35. I almost didn't. I am so grateful I tear up every time I think about it.
26 years with CF lungs. They were difficult but they got me through the hardest part of life--adolescence.
4 years with my first set of donor lungs. They may have failed me eventually but they also taught me the greatest lessons of my life--The Divine Healing of Dying, That Which Is Important and acceptance in the truest meaning of the word.
4 + years with my beautiful, healthy second set of donor lungs. Since March 2004, my life has blossomed in a way I never could have imagined. My sweet husband, my exciting new career, my amazing experiences of living with a healthy body and love. Lots of love from old friends, family and my new friends I have met in this latest leg of the journey. I am truly the most lucky human ever to walk the earth.
Even if tomorrow was my last day here on earth, these 35 years have been so full and intense and breathtaking, I could never cry a tear for my departure. I have lived. I will continue to live as long as these lungs and this body will allow. I am profoundly and completely grateful.
Some people feel sad for the days they grow one year older. I rejoice. 35. 35 feels like such an accomplishment. Such a gift. A gift I never thought I would ever open and one that took great effort on the part of so many people.
Thank you first, to my family who have traveled with me on this journey to 35 since July 17, 1973.
Thank you to my doctors, surgeons and nurses (Becky in particular) who have kept me well and saved my life...many times.
Thank you to my donor families for making the choice to let another live even during the time of great loss and grief.
Thank you to my husband for being so kind and making my life complete.
Thank you to my dear friends for holding my hand when I have felt weak and running with me when I was strong.
Thank you to my therapist who has kept me sane when life got insane.
Thank you to James for taking a chance on me, providing big opportunities and becoming my creative soul mate.
Thank you to everyone who has made my life richer, bolder, sweeter, funnier, happier and more meaningful.
I truly have so much to be thankful for. 35. What a wonderful age. What a wonderful year this has been. What amazing goals and plans I have on the horizon. What a perfectly imperfect life.
35. So sweet.
Friday, July 11, 2008
A Convention Center Filled with Gratitude
As I went rushing out the door from my office, I felt the familiar wave of dread--I was running late for a very important meeting.
It had been one of those days--every traffic light turned red just in time for me, the printer jammed every time I needed something quickly, the internet went down and I had no access to emails...yea, one of those days.
When I got to the hospital parking lot, I had made up just enough time that if I found a quick parking spot, I might make it right on the nose. Well, since it was one of those days, the hospital was having a parade for the children and the only parking left in the deck was on the top two levels. Making my way up was slow, to say the least. Happy parade attendees meandered in front of my car and the line of cars in front of me happily stopped to talk to people walking by. By the time I got to the top, I was banging the steering wheel in frustration.
I unloaded my stuff and ran for the elevators. You guessed it, they were very slow.
When I was finally delivered to the hospital hallway, I made a dash for it. My calves were killing me--those high heels are not meant for standing much less running.
As I cursed the heels, the lights and the slow parking brigade, I was suddenly struck so hard that I nearly fell down. I was running to my meeting. Running to my meeting. In heels. My calves were the problem, not my lungs. My lungs barely noticed the pace. I was running to my meeting and I was humbled. I was grateful. I was fully aware that if I was late to the "very important meeting" that was really ok.
These moments of gratitude in the midst of the rat race are so profound and beautiful. I feel like the luckiest human being on earth.
Today, I am going to the Transplant Olympic Games and I will share a booth with Ana and Isa. I will be surrounded by those touched by transplant--recipients and donor families. I am so honored to be surrounded by these special people. I look forward to a convention center filled with gratitude. I can't imagine anything more powerful than that. Can you?
It had been one of those days--every traffic light turned red just in time for me, the printer jammed every time I needed something quickly, the internet went down and I had no access to emails...yea, one of those days.
When I got to the hospital parking lot, I had made up just enough time that if I found a quick parking spot, I might make it right on the nose. Well, since it was one of those days, the hospital was having a parade for the children and the only parking left in the deck was on the top two levels. Making my way up was slow, to say the least. Happy parade attendees meandered in front of my car and the line of cars in front of me happily stopped to talk to people walking by. By the time I got to the top, I was banging the steering wheel in frustration.
I unloaded my stuff and ran for the elevators. You guessed it, they were very slow.
When I was finally delivered to the hospital hallway, I made a dash for it. My calves were killing me--those high heels are not meant for standing much less running.
As I cursed the heels, the lights and the slow parking brigade, I was suddenly struck so hard that I nearly fell down. I was running to my meeting. Running to my meeting. In heels. My calves were the problem, not my lungs. My lungs barely noticed the pace. I was running to my meeting and I was humbled. I was grateful. I was fully aware that if I was late to the "very important meeting" that was really ok.
These moments of gratitude in the midst of the rat race are so profound and beautiful. I feel like the luckiest human being on earth.
Today, I am going to the Transplant Olympic Games and I will share a booth with Ana and Isa. I will be surrounded by those touched by transplant--recipients and donor families. I am so honored to be surrounded by these special people. I look forward to a convention center filled with gratitude. I can't imagine anything more powerful than that. Can you?
Saturday, July 5, 2008
Children of Dying
As I find my way down this path of public speaking, my opinions, my topics and my style continues to evolve. The truth is, I am happy with the work I am doing but I feel that it has not yet reached the potential of where it needs to be...in all aspects.
Specifically regarding the content, though, I feel a deep rumbling inside me (and it's not my lunch) of ideas that are forming, attitudes that are sprouting, a message that is waiting to be heard. I feel in my guts that I am on the beginning of this journey and there is so much more to say that I don't even know how to put into words yet.
I was meditating the other day (yes, I am doing my homework and "finding the way back to me") and I think I heard a few whispers of that which is bubbling inside.
I have many interests, many things I believe in. All of those things are important. I can not deny, however, that the thing I find most compelling to ponder and to talk about is dying. Because of my experiences, it saddens me that we live in a culture where death is so hated and feared. It saddens me that we live lives of complete denial and only wrestle with the hate and fear when there is nowhere else to run.
If you had a child who was born with a condition that you knew would take their life, would you talk with them about it as soon as they were old enough to understand? Would you do your best to help them live a happy and fulfilled life in the time they had here on earth? Would you teach them about That Which is Important and place value on different things than the rest of our society? Would you do what you could to help them come to terms with and even accept their own mortality?
If you answered 'yes' to any of these questions, I have news for you.
We all have this condition. It's called the human condition. All of us will cease to exist some day, all of us live lives of uncertainty. All of us have the opportunity to use death's approach as motivation to shift our focus onto That Which is Important, to live fulfilled lives in the time we have here on earth and to come to terms, maybe even accept, maybe even embrace, our own mortality.
But what do we do instead? We buy into the hype. We believe our parents or our friends or our culture when it tells us that death is the worst case scenario. We deny death's presence until it overwhelms us with the pain and confusion of a great loss or our own impending end. We do not take time to make peace with death until we are in a death crisis. A death crisis is not a time to understand what death has to offer and this approach will only reinforce our culture's attitude of death as enemy. We wait to long to process the pain and grace of dying and so we never have a chance to take a more balanced view.
I find this sad. I find it silly. For those with the human condition to pretend that death is not real, to not teach our children about death's touch, to only see its presence as horrific, all of this I see as a counter-productive approach to life. There is an elephant in the room of each of our lives. Shouldn't we see what happens if we stop ignoring it?
So this is what I am beginning to understand. There are people who will read this blog post and find me to be morose, macabre, dark, sick, dramatic, rude, uncouth...I'm sure the list goes on. Those are not the people that are my audience.
What I know now is that, part of my work here, is to talk to The Children of Dying. The Children of Dying are people who, either by circumstance or curiosity, are ready and eager to learn the lessons death has to teach us, to speak of the elephant in the room and to make peace with the grief and the grace of death.
This might not be much to go on, but for now, this is all the rumblings will tell me.
XXOO
Tiffany
Specifically regarding the content, though, I feel a deep rumbling inside me (and it's not my lunch) of ideas that are forming, attitudes that are sprouting, a message that is waiting to be heard. I feel in my guts that I am on the beginning of this journey and there is so much more to say that I don't even know how to put into words yet.
I was meditating the other day (yes, I am doing my homework and "finding the way back to me") and I think I heard a few whispers of that which is bubbling inside.
I have many interests, many things I believe in. All of those things are important. I can not deny, however, that the thing I find most compelling to ponder and to talk about is dying. Because of my experiences, it saddens me that we live in a culture where death is so hated and feared. It saddens me that we live lives of complete denial and only wrestle with the hate and fear when there is nowhere else to run.
If you had a child who was born with a condition that you knew would take their life, would you talk with them about it as soon as they were old enough to understand? Would you do your best to help them live a happy and fulfilled life in the time they had here on earth? Would you teach them about That Which is Important and place value on different things than the rest of our society? Would you do what you could to help them come to terms with and even accept their own mortality?
If you answered 'yes' to any of these questions, I have news for you.
We all have this condition. It's called the human condition. All of us will cease to exist some day, all of us live lives of uncertainty. All of us have the opportunity to use death's approach as motivation to shift our focus onto That Which is Important, to live fulfilled lives in the time we have here on earth and to come to terms, maybe even accept, maybe even embrace, our own mortality.
But what do we do instead? We buy into the hype. We believe our parents or our friends or our culture when it tells us that death is the worst case scenario. We deny death's presence until it overwhelms us with the pain and confusion of a great loss or our own impending end. We do not take time to make peace with death until we are in a death crisis. A death crisis is not a time to understand what death has to offer and this approach will only reinforce our culture's attitude of death as enemy. We wait to long to process the pain and grace of dying and so we never have a chance to take a more balanced view.
I find this sad. I find it silly. For those with the human condition to pretend that death is not real, to not teach our children about death's touch, to only see its presence as horrific, all of this I see as a counter-productive approach to life. There is an elephant in the room of each of our lives. Shouldn't we see what happens if we stop ignoring it?
So this is what I am beginning to understand. There are people who will read this blog post and find me to be morose, macabre, dark, sick, dramatic, rude, uncouth...I'm sure the list goes on. Those are not the people that are my audience.
What I know now is that, part of my work here, is to talk to The Children of Dying. The Children of Dying are people who, either by circumstance or curiosity, are ready and eager to learn the lessons death has to teach us, to speak of the elephant in the room and to make peace with the grief and the grace of death.
This might not be much to go on, but for now, this is all the rumblings will tell me.
XXOO
Tiffany
Friday, July 4, 2008
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