Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
[Substitute almost any illness for 'heart disease'. This is re-posted with permission.]
A heart patients positive attitude: a crazy, crazy idea?
8
JUN
by Carolyn Thomas
I blame genetics and three decades spent working in public relations for generally making me one of those smiley, glass-half-full, annoyingly ber-positive personalities much of the time. Not even horrific symptoms during my heart attack could alter the weak happy face that seemed freakishly pasted on throughout that ordeal.
Its as if I were channeling Elizabeth Banks classic character in her short yet brilliant film Just A Little Heart Attack in which she attempts to smile brightly despite textbook cardiac symptoms, and even taunts her concerned family:
Do I look like the kind of person whos having a HEART ATTACK?
Dont make a fuss. Chin up. Dont worry, be happy. Just get on with it. Im fine, just fine.
Trouble is: people like me who sport a perma-smiley face may not be fine. Not at all. And I now believe that feeling obliged to pretend we are what were not can be both physically and psychologically damaging.
Dr. Michael Lerner offered a San Francisco audience a similar message when he spoke at a 2006 Healing Journeys conference about the difference between curing and healing:
I think this is one of the most toxic New Age ideas: that all patients should keep a positive attitude.
What a crazy, crazy idea that is! It is much healthier, much more healing, to allow yourself to feel whatever it is that comes up in you, and to allow yourself to express it. Allow yourself to work with the anxiety, the depression, the grief.
Dr. Lerner was speaking about the cancer patients he works with, but could have easily been addressing heart attack survivors (as he happens to be himself). I found his words to be oddly uplifting, in the same way that you might feel relieved by permission to feel the way you feel, that its all somehow normal, and that you are not alone in feeling this way.
And as Dr. Kent Bottles recently described the positive psychology movement:
Even as I devoured book after book and article after article on positive psychology, I sensed there was something wrong or perhaps incomplete about my approach to trying to be happy. Happiness does not always seem to me to be the proper response.
There are times and places where the proper response, it seems to me, is anger and indignation and sometimes sadness.
Author Barbara Ehrenreich also observed that the pervasive pressure on sick patients to be relentlessly positive is like seeing the glass half full, even when it lies shattered on the floor.
In a compelling essay called Smile! Youve Got Cancer! in The Guardian (January 2010), breast cancer survivor Ehrenreich observed that cancer is not a problem or an illness its a gift! Or so she was told repeatedly after her own cancer diagnosis. But the positive thinkers are wrong, she now says: sugar-coating illnesses can exact a dreadful cost.
Today, breast cancer is the biggest disease on the cultural map, bigger even than those more prolific killers of women heart disease, lung cancer, and stroke. And the first thing I discovered is that not everyone views the disease with horror and dread.
Despite helpful information out there, the more fellow victims I discovered and read, the greater my sense of isolation grew. No one among the bloggers and book writers seemed to share my sense of outrage over the disease and the available treatments.
In the mainstream of breast cancer culture, there is very little anger. In fact, the overall tone is almost universally upbeat, with inspirational quotes like When life hands out lemons, squeeze out a smile and much more of that ilk.
This is an ideological force in our culture that encourages us to deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.
The reality that I seem to be denying is that since surviving a heart attack four years ago, ongoing cardiac issues along with a revised diagnosis of Inoperable Coronary Microvascular Disease have meant a profound transformation in my day-to-day life, complete with yucky bits like debilitating chest pain, shortness of breath and (worst!) frequent bouts of bone-crushing fatigue.
A former distance runner in good health, Ive now become a frequent flyer of the medical care system, including regular consults with the Regional Pain Clinic, my cardiologist and other doctors. My days are defined as one-outing, two-outing or (rarely) three-outing days, each exhausting outing requiring a lie-down both before and afterwards just to help me maintain a minimally functional state.
Much of the time, frankly, I feel like Im barely hanging on by my fingernails. There is nothing good or noble or positive about feeling this sick. And I certainly dont consider heart disease to be a gift.
Yet around other people, almost unbidden, out trots my happy-face-smile and that positive Im fine, just fine! persona. Heart disease is largely an invisible diagnosis; I know that I look and sound pretty normal to most people. Ill attempt to make pleasant small talk even while near collapse from exhaustion meltdown. Where does this craziness come from?
Check out this smiley photo of me standing between my late mother Joanie and my daughter Larissa. This picture was taken just two short days before I was finally hospitalized with a myocardial infarction (heart attack). I was very ill during this photo shoot. But even though by then Id been suffering increasingly worsening cardiac symptoms every day, day after day, several times a day, I still somehow had an instinctive need to appear fine, just fine especially around my mother and sibs during an important family celebration of Moms 80th birthday.
The truly shocking thing to me after finally being discharged from hospital was how utterly unprepared I was for the bleak emotional crash that struck during those early weeks of recuperation. Nobody no doctor, no nurse, no hospital staff, not one single person had warned me about this crash while Id been recuperating in CCU. I had to learn on my own months later that, as Mayo Clinic cardiologists explained to me, up to 65% of heart attack survivors experience significant depression, yet fewer than 1o% are appropriately identified.
Why are heart patients not being warned about what might lie ahead?
The Alaska cardiac psychologist Dr. Stephen Parker has survived a heart attack himself, and has written with rare and exquisite candor about suffering severe depression and anxiety following his own cardiac event including in his highly recommended book, Heart Attack and Soul. He describes, for example, what he calls the swirling emotions he experienced after surviving a heart attack:
Relief at survival disbelief and anger that it happened grief for everything that has and will be lost gratitude to those who helped extreme vulnerability in a previously safe world fear of what the future might bring.
A heart attack is a deeply wounding event, and it is a wound that takes a long time to recover from, whatever the treatment.
Clinical psychologist Dr. Elvira Aletta, whose writing and worldview I admire a lot, wrote recently on a similar theme in life: the popular platitude that insists What-Doesnt-Kill-Us-Makes-Us-Stronger Blah Blah Blah . . . For example:
There are so many ways life almost kills us.
The responsibility of caring for elderly parents, a disabled child, a spouse. The burden of being a single parent. Discovering that the person you thought you could trust with your most precious heart turning out to be unworthy. Losing a loved one to illness or death, slowly or suddenly. Being worn down looking for a job or being in a job you hate. Fighting for our own lives when sickness strikes and doesnt politely go away like its supposed to. All of the above happening all at once!
Trauma, emotional dark pits, cascading series of unfortunate events. They happen. Life happens.
But some days, Dr. Aletta reminds us, we just have to rage. Cry, whine, moan, pout, eat ice cream right out of the carton or whipped cream straight from the aerosol can.
And just simply adjusting our general expectations of life can also be an effective strategy. She adds:
Lowering expectations sucks, but that is exactly what has saved me from becoming a depressed bitch of the first order.
This kind of spunk captures the essence of why I seem somehow able to carry on these days in what heart patients often refer to as the new normal. Ive had to lower and then often re-lower daily expectations of what Im able or willing to do. And this downshifting can escalate even from hour to hour.
Dr. Eric G. Wilsons book, Against Happiness: In Praise of Melancholy, may serve as a reality check on our obsession with the pursuit of happiness at all costs. He writes:
I am afraid that our cultures over-emphasis on happiness at the expense of sadness might be dangerous, a wanton forgetting of an essential part of a full life.
Further, I am wary in the face of this possibility: to desire only happiness in a world undoubtedly tragic is to become inauthentic, to settle for unrealistic abstractions that ignore concrete situations.
Dont get me wrong. Like most of you, Id generally rather spend time with cheerful, funny optimists, and I have little tolerance for the poor me victimhood of whiners (very likely, this may help to account for my own extreme reluctance to actually become one of them, no matter how justified!)
And Ive both read and written (here and here) about the known effectiveness of an optimistic attitude when it comes to improved outcomes in chronic diagnoses like heart disease. The medical literature is crawling with experts telling us so.
Meanwhile, over at The New York Times, veteran health columnist Jane Brody wrote this* about being positive and optimistic in life:
Optimists have lower death rates than those who are pessimistic. No doubt, the optimists are healthier because they are more inclined to take good care of themselves.
Research has indicated that a propensity toward optimism is strongly influenced by genes, most likely ones that govern neurotransmitters in the brain. Still, the way someone is raised undoubtedly plays a role, too. Parents who bolster childrens self-esteem by avoiding criticism and praising accomplishments, however meager, can encourage in them a lifelong can-do attitude.
Clearly, Jane and her researcher pals never dropped in at my house while I was growing up in our family of seven. Avoiding criticism? Praising accomplishments? I wish.
My parents perspective: to do so would produce kids with swelled heads, which as everybody knew back then, would be the worst possible fate for any child.
My own perspective: pasting on that pleasant happy face smile and can-do attitude no matter what! may have served me well as a self-preservation strategy rather than being the result of having my self-esteem bolstered as a child.
As for that lofty can-do attitude embraced by Jane Brody and pop-psych best-sellers and life coaches and breast cancer sites, consider these parting words from Dr. Michael Lerner:
Underneath those feelings of anxiety, depression, and grief, if you do allow them to come out, you can find the truly positive ways of living in relationship with all of your feelings.
In other words, maybe people living with a chronic and progressive condition like heart disease should be allowed no, make that encouraged! to occasionally wallow with gusto.
2012 Carolyn Thomas Heart Sisters www.myheartsisters.org
Q: How has a glass-half-full attitude helped or hurt you while living with chronic illness?
A heart patients positive attitude: a crazy, crazy idea?
8
JUN
by Carolyn Thomas
I blame genetics and three decades spent working in public relations for generally making me one of those smiley, glass-half-full, annoyingly ber-positive personalities much of the time. Not even horrific symptoms during my heart attack could alter the weak happy face that seemed freakishly pasted on throughout that ordeal.
Its as if I were channeling Elizabeth Banks classic character in her short yet brilliant film Just A Little Heart Attack in which she attempts to smile brightly despite textbook cardiac symptoms, and even taunts her concerned family:
Do I look like the kind of person whos having a HEART ATTACK?
Dont make a fuss. Chin up. Dont worry, be happy. Just get on with it. Im fine, just fine.
Trouble is: people like me who sport a perma-smiley face may not be fine. Not at all. And I now believe that feeling obliged to pretend we are what were not can be both physically and psychologically damaging.
Dr. Michael Lerner offered a San Francisco audience a similar message when he spoke at a 2006 Healing Journeys conference about the difference between curing and healing:
I think this is one of the most toxic New Age ideas: that all patients should keep a positive attitude.
What a crazy, crazy idea that is! It is much healthier, much more healing, to allow yourself to feel whatever it is that comes up in you, and to allow yourself to express it. Allow yourself to work with the anxiety, the depression, the grief.
Dr. Lerner was speaking about the cancer patients he works with, but could have easily been addressing heart attack survivors (as he happens to be himself). I found his words to be oddly uplifting, in the same way that you might feel relieved by permission to feel the way you feel, that its all somehow normal, and that you are not alone in feeling this way.
And as Dr. Kent Bottles recently described the positive psychology movement:
Even as I devoured book after book and article after article on positive psychology, I sensed there was something wrong or perhaps incomplete about my approach to trying to be happy. Happiness does not always seem to me to be the proper response.
There are times and places where the proper response, it seems to me, is anger and indignation and sometimes sadness.
Author Barbara Ehrenreich also observed that the pervasive pressure on sick patients to be relentlessly positive is like seeing the glass half full, even when it lies shattered on the floor.
In a compelling essay called Smile! Youve Got Cancer! in The Guardian (January 2010), breast cancer survivor Ehrenreich observed that cancer is not a problem or an illness its a gift! Or so she was told repeatedly after her own cancer diagnosis. But the positive thinkers are wrong, she now says: sugar-coating illnesses can exact a dreadful cost.
Today, breast cancer is the biggest disease on the cultural map, bigger even than those more prolific killers of women heart disease, lung cancer, and stroke. And the first thing I discovered is that not everyone views the disease with horror and dread.
Despite helpful information out there, the more fellow victims I discovered and read, the greater my sense of isolation grew. No one among the bloggers and book writers seemed to share my sense of outrage over the disease and the available treatments.
In the mainstream of breast cancer culture, there is very little anger. In fact, the overall tone is almost universally upbeat, with inspirational quotes like When life hands out lemons, squeeze out a smile and much more of that ilk.
This is an ideological force in our culture that encourages us to deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.
The reality that I seem to be denying is that since surviving a heart attack four years ago, ongoing cardiac issues along with a revised diagnosis of Inoperable Coronary Microvascular Disease have meant a profound transformation in my day-to-day life, complete with yucky bits like debilitating chest pain, shortness of breath and (worst!) frequent bouts of bone-crushing fatigue.
A former distance runner in good health, Ive now become a frequent flyer of the medical care system, including regular consults with the Regional Pain Clinic, my cardiologist and other doctors. My days are defined as one-outing, two-outing or (rarely) three-outing days, each exhausting outing requiring a lie-down both before and afterwards just to help me maintain a minimally functional state.
Much of the time, frankly, I feel like Im barely hanging on by my fingernails. There is nothing good or noble or positive about feeling this sick. And I certainly dont consider heart disease to be a gift.
Yet around other people, almost unbidden, out trots my happy-face-smile and that positive Im fine, just fine! persona. Heart disease is largely an invisible diagnosis; I know that I look and sound pretty normal to most people. Ill attempt to make pleasant small talk even while near collapse from exhaustion meltdown. Where does this craziness come from?
Check out this smiley photo of me standing between my late mother Joanie and my daughter Larissa. This picture was taken just two short days before I was finally hospitalized with a myocardial infarction (heart attack). I was very ill during this photo shoot. But even though by then Id been suffering increasingly worsening cardiac symptoms every day, day after day, several times a day, I still somehow had an instinctive need to appear fine, just fine especially around my mother and sibs during an important family celebration of Moms 80th birthday.
The truly shocking thing to me after finally being discharged from hospital was how utterly unprepared I was for the bleak emotional crash that struck during those early weeks of recuperation. Nobody no doctor, no nurse, no hospital staff, not one single person had warned me about this crash while Id been recuperating in CCU. I had to learn on my own months later that, as Mayo Clinic cardiologists explained to me, up to 65% of heart attack survivors experience significant depression, yet fewer than 1o% are appropriately identified.
Why are heart patients not being warned about what might lie ahead?
The Alaska cardiac psychologist Dr. Stephen Parker has survived a heart attack himself, and has written with rare and exquisite candor about suffering severe depression and anxiety following his own cardiac event including in his highly recommended book, Heart Attack and Soul. He describes, for example, what he calls the swirling emotions he experienced after surviving a heart attack:
Relief at survival disbelief and anger that it happened grief for everything that has and will be lost gratitude to those who helped extreme vulnerability in a previously safe world fear of what the future might bring.
A heart attack is a deeply wounding event, and it is a wound that takes a long time to recover from, whatever the treatment.
Clinical psychologist Dr. Elvira Aletta, whose writing and worldview I admire a lot, wrote recently on a similar theme in life: the popular platitude that insists What-Doesnt-Kill-Us-Makes-Us-Stronger Blah Blah Blah . . . For example:
There are so many ways life almost kills us.
The responsibility of caring for elderly parents, a disabled child, a spouse. The burden of being a single parent. Discovering that the person you thought you could trust with your most precious heart turning out to be unworthy. Losing a loved one to illness or death, slowly or suddenly. Being worn down looking for a job or being in a job you hate. Fighting for our own lives when sickness strikes and doesnt politely go away like its supposed to. All of the above happening all at once!
Trauma, emotional dark pits, cascading series of unfortunate events. They happen. Life happens.
But some days, Dr. Aletta reminds us, we just have to rage. Cry, whine, moan, pout, eat ice cream right out of the carton or whipped cream straight from the aerosol can.
And just simply adjusting our general expectations of life can also be an effective strategy. She adds:
Lowering expectations sucks, but that is exactly what has saved me from becoming a depressed bitch of the first order.
This kind of spunk captures the essence of why I seem somehow able to carry on these days in what heart patients often refer to as the new normal. Ive had to lower and then often re-lower daily expectations of what Im able or willing to do. And this downshifting can escalate even from hour to hour.
Dr. Eric G. Wilsons book, Against Happiness: In Praise of Melancholy, may serve as a reality check on our obsession with the pursuit of happiness at all costs. He writes:
I am afraid that our cultures over-emphasis on happiness at the expense of sadness might be dangerous, a wanton forgetting of an essential part of a full life.
Further, I am wary in the face of this possibility: to desire only happiness in a world undoubtedly tragic is to become inauthentic, to settle for unrealistic abstractions that ignore concrete situations.
Dont get me wrong. Like most of you, Id generally rather spend time with cheerful, funny optimists, and I have little tolerance for the poor me victimhood of whiners (very likely, this may help to account for my own extreme reluctance to actually become one of them, no matter how justified!)
And Ive both read and written (here and here) about the known effectiveness of an optimistic attitude when it comes to improved outcomes in chronic diagnoses like heart disease. The medical literature is crawling with experts telling us so.
Meanwhile, over at The New York Times, veteran health columnist Jane Brody wrote this* about being positive and optimistic in life:
Optimists have lower death rates than those who are pessimistic. No doubt, the optimists are healthier because they are more inclined to take good care of themselves.
Research has indicated that a propensity toward optimism is strongly influenced by genes, most likely ones that govern neurotransmitters in the brain. Still, the way someone is raised undoubtedly plays a role, too. Parents who bolster childrens self-esteem by avoiding criticism and praising accomplishments, however meager, can encourage in them a lifelong can-do attitude.
Clearly, Jane and her researcher pals never dropped in at my house while I was growing up in our family of seven. Avoiding criticism? Praising accomplishments? I wish.
My parents perspective: to do so would produce kids with swelled heads, which as everybody knew back then, would be the worst possible fate for any child.
My own perspective: pasting on that pleasant happy face smile and can-do attitude no matter what! may have served me well as a self-preservation strategy rather than being the result of having my self-esteem bolstered as a child.
As for that lofty can-do attitude embraced by Jane Brody and pop-psych best-sellers and life coaches and breast cancer sites, consider these parting words from Dr. Michael Lerner:
Underneath those feelings of anxiety, depression, and grief, if you do allow them to come out, you can find the truly positive ways of living in relationship with all of your feelings.
In other words, maybe people living with a chronic and progressive condition like heart disease should be allowed no, make that encouraged! to occasionally wallow with gusto.
2012 Carolyn Thomas Heart Sisters www.myheartsisters.org
Q: How has a glass-half-full attitude helped or hurt you while living with chronic illness?
I never believe those articles about people with chronic illness where people say "Oh, she never complained ..." or "Not once did he whine ..." It just isn't realistic and I figure people are looking with rose-colored glasses. I can't believe these people never had a "Woe is me" moment.
There's a quote I like from Maya Angelou where her brother basically "gives" her permission to be moody, but doesn't want to get sucked into the abyss. We should maybe all give that permission to folks ... they don't have to drag us down with them, but they should know that it is OK to be sad.
" ... if you're happy being miserable, enjoy it, but don't ask me to feel sorry for you. Just get all down in it and wallow around. Take your time to savor all its subtleties, but don't come to be expecting sympathy." -- from "Gather Together in My Name"