Another edition of the ChronicBabe blog carnival will be out soon, and it’s about holiday wishes when you live with chronic illness. Jenni Prokpy asks, “What are you asking Santa for? What do you wish for the people who care for you? What wishes have already been fulfilled this holiday season?”
Where to start?
In so many ways, I have everything I need and want: I will wake up on Christmas morning with a happy, healthy toddler who greets every day with joy.
But that doesn’t make for much of a blog post, does it?
For people struggling with infertility, which is even more difficult and heartbreaking this time of year, I wish for them a path to building the family they dream of that is as smooth and expedient as possible.
For the babies and families spending the holidays in the NICU, I wish for them that they surpass all the odds they face and are soon able go home, and that they have compassionate caregivers and supportive friends and family until that happens.
For people living with chronic pain, I wish for them relief, physically and emotionally, and substantive distractions if relief is not possible.
For patients living with chronic illness, I wish for them a sense of acceptance that does not mean resignation, and a sense of balance that tends to their bodies and still nourishes their minds.
For the people who love, care for, and often live with people with chronic illness, I wish for them that they truly know how appreciative we are of their efforts, and that they give themselves permission to take a break.
For parents caring of sick children in particular, I wish for them the grit to advocate, the strength to defer when necessary, and (some) solace in knowing that what might hurt right now often helps their children long-term.
For the doctors and researchers working on rare diseases, mine and so many others, I wish for them continued ingenuity, persistence, and necessary funding.
And for my daughter, among so many hopes and wishes, I wish for her that she experiences as much joy from life as she brings into it.
Showing posts with label Blog Carnivals. Show all posts
Showing posts with label Blog Carnivals. Show all posts
Friday, December 09, 2011
Friday, December 02, 2011
On Why I Write
Sharon at Bed, Body & Beyond is hosting the next Patients For a Moment blog carnival and asks us to consider why we write.
I’ve posted about writing often here, and how the questions of
public lives versus private lives and storytelling get more complicated the longer we write.
But since it is such a fundamental part of my life, as well as a fundamental part of my experience as a patient, it’s a question worth exploring further.
First, there’s the obvious. I write because as an author, editor, and an academic who teaches writing, it is my job.
I started writing this blog because I knew there must be other people like me out there, young adults living with chronic illness, and I wanted to find them. I’d always been the sick kid, the sick teenager, the sick twenty-something, and while I knew I might never meet someone with my rare set of diseases in real life, I knew wasn’t alone. And I knew that whether we’d been sick our whole lives or were recently diagnosed, whether our illnesses were life-threatening or life-altering, our individual symptom differences paled in comparison to the universals we struggled with: acceptance, denial, balance, guilt, etc.
I keep writing this blog because as my own journey has evolved from being a single graduate student to becoming a married person, an author, and a mother, I continue to learn and be inspired by those I find on similar paths, facing similar challenges. Careers, infertility, chronic illness, parenthood, patient-hood—the perspectives I encounter on all of this from readers and from other blogs are often invaluable.
I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults. I am writing my second book because I started asking lots of questions about the evolution of chronic illness in American society that I didn’t know the answers to, and I realized I had to keep digging. (Still digging, but getting close to the end!)
But more simply, I write because it is what I have always done, for as long as I have memories. I write to process, I write to clarify, I write to learn.
As a sick child, I wrote because it was something I could do no matter how bad I felt or how many nights I was in the hospital. I wrote because I loved to read, and books kept me both distracted from illness and connected to something beyond myself. I wrote because I couldn’t always run or play, and I wrote because the voice I discovered in writing gave me an identity beyond that of the sick one. It gave me self-esteem and confidence when my body betrayed me over and over. I don’t know that I’d have gone to Georgetown, or interned at Washingtonpost.com, or done a lot of the things being a teenage and college-aged writer allowed me to do had writing not already been such an integral part of my self-concept.
I have no doubt I’d still be a writer even I hadn’t spent my whole life as a patient. It’s the way I make sense of my world, it is my instinct at every turn. But I wouldn’t have needed writing the way I did so often through the years, and I don’t know that I would appreciate its ability to build community and connect people the way I do. Writing is an extricable part of my personal life, but I’m fortunate that having a career based on writing isn’t just good for my spirit. Writing allows me to have a successful professional life despite my health issues, and though I didn’t consciously set out on this path for those reasons all those years ago, I am grateful to be here.
I’ve posted about writing often here, and how the questions of
public lives versus private lives and storytelling get more complicated the longer we write.
But since it is such a fundamental part of my life, as well as a fundamental part of my experience as a patient, it’s a question worth exploring further.
First, there’s the obvious. I write because as an author, editor, and an academic who teaches writing, it is my job.
I started writing this blog because I knew there must be other people like me out there, young adults living with chronic illness, and I wanted to find them. I’d always been the sick kid, the sick teenager, the sick twenty-something, and while I knew I might never meet someone with my rare set of diseases in real life, I knew wasn’t alone. And I knew that whether we’d been sick our whole lives or were recently diagnosed, whether our illnesses were life-threatening or life-altering, our individual symptom differences paled in comparison to the universals we struggled with: acceptance, denial, balance, guilt, etc.
I keep writing this blog because as my own journey has evolved from being a single graduate student to becoming a married person, an author, and a mother, I continue to learn and be inspired by those I find on similar paths, facing similar challenges. Careers, infertility, chronic illness, parenthood, patient-hood—the perspectives I encounter on all of this from readers and from other blogs are often invaluable.
I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults. I am writing my second book because I started asking lots of questions about the evolution of chronic illness in American society that I didn’t know the answers to, and I realized I had to keep digging. (Still digging, but getting close to the end!)
But more simply, I write because it is what I have always done, for as long as I have memories. I write to process, I write to clarify, I write to learn.
As a sick child, I wrote because it was something I could do no matter how bad I felt or how many nights I was in the hospital. I wrote because I loved to read, and books kept me both distracted from illness and connected to something beyond myself. I wrote because I couldn’t always run or play, and I wrote because the voice I discovered in writing gave me an identity beyond that of the sick one. It gave me self-esteem and confidence when my body betrayed me over and over. I don’t know that I’d have gone to Georgetown, or interned at Washingtonpost.com, or done a lot of the things being a teenage and college-aged writer allowed me to do had writing not already been such an integral part of my self-concept.
I have no doubt I’d still be a writer even I hadn’t spent my whole life as a patient. It’s the way I make sense of my world, it is my instinct at every turn. But I wouldn’t have needed writing the way I did so often through the years, and I don’t know that I would appreciate its ability to build community and connect people the way I do. Writing is an extricable part of my personal life, but I’m fortunate that having a career based on writing isn’t just good for my spirit. Writing allows me to have a successful professional life despite my health issues, and though I didn’t consciously set out on this path for those reasons all those years ago, I am grateful to be here.
Sunday, November 06, 2011
On Inspiration
Aviva at Sick Momma is hosting the next edition of Patients For a Moment. In her prompt, she asks,
“So what do you do to get yourself out of the doldrums when you fall into a funk? What (or who) inspires you and gives you hope? Where have you found inspiration when you weren't even looking for it? How do you keep on keeping on when your pain is high and your fatigue is even higher?”
When I try to think of the big picture concepts here, I get a little bogged down. There are so many things I could say, and I end up staring at a blank screen, precious moments of time slipping away. More just write, already and less perseverating, shall we?
Honestly, I’m just not in the right zone to write specifically about illness right now. I’m in a tunnel of baby-deadlines-more deadlines-caffeine and focused on getting through the day, and getting enough done that I can get to sleep. Like it or not, good for me or not, there isn’t a lot of mental space left to think about or process anything related to illness, even when its immediacy and urgency wakes me up at 3am.
So, I thought about the stories and thoughts that have inspired me this week, the things that make me stop and pause as a writer, a professor, a mother, a citizen, and, yes, a patient, too. I’m not in the doldrums of illness, but I am definitely in a place where a few good reminders about perspective, trust, curiosity, and discovery are nourishing.
--Have you read the eulogy for Steve Jobs written by his sister? It’s a rich, personable portrait of a man whose vision is a force in many our lives, and it’s also a beautiful look at love, creativity, and passion. His last words were, “Oh wow. Oh wow. Oh wow.” Pretty powerful.
--As the owner of two rescue dogs with sad pasts, I am always moved by stories of redemption and hope. I cam across this emotional article about abuse, trauma, trust, and resiliency for both a dog and her owner. While the animal’s abuse haunts me, the way both have been able to re-build their lives and trust unconditionally are truly inspirational to me. Living in the moment and letting go of pain, frustration, anger, and doubt are never easy, but this really brings to light what is possible when we do.
--I have always felt pretty fortunate to teach the classes I do (writing in the health sciences). My students have been and are passionate about their future careers as health care providers, are they are intellectually curious and engaged, and as a professor and a patient, they me feel just that much more hopeful about the future. Patients would be lucky to have some of these students as their doctors, nurses, pharmacists, and PTs. Every semester, reading their research papers and seeing the inspired issues they delve into makes me appreciate this more.
--Watching this little girl of mine grow from a baby into a walking-talking-signing-laughing-teasing-bike-riding toddler is, quite simply, amazing. No matter what else is going on in my day, in my body, in the world in general, watching her develop, experience new things, and approach life with an independent, open spirit is the essence of inspiring. Every day is a new opportunity to learn, to grow, and to build on what was already there, and that’s a lesson that helps everyone, I think.
“So what do you do to get yourself out of the doldrums when you fall into a funk? What (or who) inspires you and gives you hope? Where have you found inspiration when you weren't even looking for it? How do you keep on keeping on when your pain is high and your fatigue is even higher?”
When I try to think of the big picture concepts here, I get a little bogged down. There are so many things I could say, and I end up staring at a blank screen, precious moments of time slipping away. More just write, already and less perseverating, shall we?
Honestly, I’m just not in the right zone to write specifically about illness right now. I’m in a tunnel of baby-deadlines-more deadlines-caffeine and focused on getting through the day, and getting enough done that I can get to sleep. Like it or not, good for me or not, there isn’t a lot of mental space left to think about or process anything related to illness, even when its immediacy and urgency wakes me up at 3am.
So, I thought about the stories and thoughts that have inspired me this week, the things that make me stop and pause as a writer, a professor, a mother, a citizen, and, yes, a patient, too. I’m not in the doldrums of illness, but I am definitely in a place where a few good reminders about perspective, trust, curiosity, and discovery are nourishing.
--Have you read the eulogy for Steve Jobs written by his sister? It’s a rich, personable portrait of a man whose vision is a force in many our lives, and it’s also a beautiful look at love, creativity, and passion. His last words were, “Oh wow. Oh wow. Oh wow.” Pretty powerful.
--As the owner of two rescue dogs with sad pasts, I am always moved by stories of redemption and hope. I cam across this emotional article about abuse, trauma, trust, and resiliency for both a dog and her owner. While the animal’s abuse haunts me, the way both have been able to re-build their lives and trust unconditionally are truly inspirational to me. Living in the moment and letting go of pain, frustration, anger, and doubt are never easy, but this really brings to light what is possible when we do.
--I have always felt pretty fortunate to teach the classes I do (writing in the health sciences). My students have been and are passionate about their future careers as health care providers, are they are intellectually curious and engaged, and as a professor and a patient, they me feel just that much more hopeful about the future. Patients would be lucky to have some of these students as their doctors, nurses, pharmacists, and PTs. Every semester, reading their research papers and seeing the inspired issues they delve into makes me appreciate this more.
--Watching this little girl of mine grow from a baby into a walking-talking-signing-laughing-teasing-bike-riding toddler is, quite simply, amazing. No matter what else is going on in my day, in my body, in the world in general, watching her develop, experience new things, and approach life with an independent, open spirit is the essence of inspiring. Every day is a new opportunity to learn, to grow, and to build on what was already there, and that’s a lesson that helps everyone, I think.
Sunday, March 07, 2010
Who Would I Be Without Illness?
For this week’s Patients For a Moment, founder Duncan Cross asks the question,
Who would you be without your illness?
He goes on to write, There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?
Duncan Cross is one of the best patient bloggers on the Internet, in my humble opinion, and I’m glad he’s probing all of us like this because I too am bothered by the tendency to sugarcoat realities of illness among silver linings or attach maudlin sentiments to what can be demanding, painful circumstances.
I’ve mulled this question over several times the past few days. Indirectly, like in this post on illness and personality, I’ve touched on this question before.
Who would I be without illness?
When you’ve been sick your entire life, that becomes a much harder question to answer. I can’t mourn the “before” I never had, and I don’t spend much time speculating on the person I could have been otherwise because I am busy being and surviving. Illness has always been there, one of the few constants that remained predictable only in its unpredictability despite the many other changes in my life: high school, college, graduate school, career, marriage.
While I am at a point where illness is not the defining characteristic of my life, (and I know this because pushing back against or despite illness is no longer the main motivating force behind most of my decisions) clearly it is still present in nearly all of my choices and compromises.
It is impossible to pull illness out of the many threads that combine to make up the past thirty years, to take it away and see what would remain.
Certainly I can look at the accumulated losses over the years and see what could have been in those moments: all the birthdays, showers, holidays, vacations, weekend plans, family gatherings, and months of school I’ve missed over the years, all the disappointments that had me crying into my pillow as teenager and keep me awake at night as an adult.
There are definitely times when I wish those basic rights of passage that we often associate with living a “normal” life didn’t have to be so hard: What would it have been like to graduate from college with the same good GPA without having to study for tests in the ICU, or graduate from high school without a full year and half of it taken away from me, a blur of missed opportunities and make-up work?
What would it be like to live a life that wasn’t always in a state of catching up?
Or, what would it have been like to marry my husband without the “in sickness and in health” part of the vows already such an obvious and omnipresent part of our relationship? What would it feel like to dream about a future family with him without having to weigh so many competing risks and priorities, to be able to speak confidently in the language of “when” and not “if”?
And yet…
I know, here’s where you’re half-expecting, half-cringing, thinking I am going to say but it’s all been worth it and I’ve learned so much and I am a stronger person for it.
Don’t worry, didn’t I say earlier I don’t like a saccharine gloss applied to illness?
I don’t. Of course it would be nice to not have to fight so hard just to get to the starting line all the time. Of course I’ve had my fair share of anger and frustration and grief over that, and of course I realize that with progressive diseases those frustrations will grow more complicated.
That’s life. That’s the only life I’ve known and it’s the same life I grew up seeing for other family members.
There are some things I do know. For example, I’ve made a lot of negotiations in my career to accommodate illness and I know I might have made different choices if I were healthy, but I also know that no matter what else I might be doing, I would still be a writer. I would still have strong relationships with wonderful people, and who knows what other life obstacles would test our relationships besides illness.
I would still be a stubborn pain in the neck.
The thing is, I do not have regrets. I am proud of what I’ve been able to do and for me, to wish for what might have been, to wish for some hypothetical, abstract notion of “healthy,” chips away at what I have done.
For thirty years I have lived my life in extremes, and in the brief periods where things are stable I catch glimpses of what it would be like to live somewhere closer to the middle. So maybe that would be me minus illness, someone less extreme? But that could also mean someone with less determination or, as my husband says about me when I am exasperating, someone less feisty.
And I don’t know that I would want to make that compromise. My biggest strengths are indeed my biggest weaknesses and while illness may amplify those, I don’t think I’d want to be me without them.
Who would you be without your illness?
He goes on to write, There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?
Duncan Cross is one of the best patient bloggers on the Internet, in my humble opinion, and I’m glad he’s probing all of us like this because I too am bothered by the tendency to sugarcoat realities of illness among silver linings or attach maudlin sentiments to what can be demanding, painful circumstances.
I’ve mulled this question over several times the past few days. Indirectly, like in this post on illness and personality, I’ve touched on this question before.
Who would I be without illness?
When you’ve been sick your entire life, that becomes a much harder question to answer. I can’t mourn the “before” I never had, and I don’t spend much time speculating on the person I could have been otherwise because I am busy being and surviving. Illness has always been there, one of the few constants that remained predictable only in its unpredictability despite the many other changes in my life: high school, college, graduate school, career, marriage.
While I am at a point where illness is not the defining characteristic of my life, (and I know this because pushing back against or despite illness is no longer the main motivating force behind most of my decisions) clearly it is still present in nearly all of my choices and compromises.
It is impossible to pull illness out of the many threads that combine to make up the past thirty years, to take it away and see what would remain.
Certainly I can look at the accumulated losses over the years and see what could have been in those moments: all the birthdays, showers, holidays, vacations, weekend plans, family gatherings, and months of school I’ve missed over the years, all the disappointments that had me crying into my pillow as teenager and keep me awake at night as an adult.
There are definitely times when I wish those basic rights of passage that we often associate with living a “normal” life didn’t have to be so hard: What would it have been like to graduate from college with the same good GPA without having to study for tests in the ICU, or graduate from high school without a full year and half of it taken away from me, a blur of missed opportunities and make-up work?
What would it be like to live a life that wasn’t always in a state of catching up?
Or, what would it have been like to marry my husband without the “in sickness and in health” part of the vows already such an obvious and omnipresent part of our relationship? What would it feel like to dream about a future family with him without having to weigh so many competing risks and priorities, to be able to speak confidently in the language of “when” and not “if”?
And yet…
I know, here’s where you’re half-expecting, half-cringing, thinking I am going to say but it’s all been worth it and I’ve learned so much and I am a stronger person for it.
Don’t worry, didn’t I say earlier I don’t like a saccharine gloss applied to illness?
I don’t. Of course it would be nice to not have to fight so hard just to get to the starting line all the time. Of course I’ve had my fair share of anger and frustration and grief over that, and of course I realize that with progressive diseases those frustrations will grow more complicated.
That’s life. That’s the only life I’ve known and it’s the same life I grew up seeing for other family members.
There are some things I do know. For example, I’ve made a lot of negotiations in my career to accommodate illness and I know I might have made different choices if I were healthy, but I also know that no matter what else I might be doing, I would still be a writer. I would still have strong relationships with wonderful people, and who knows what other life obstacles would test our relationships besides illness.
I would still be a stubborn pain in the neck.
The thing is, I do not have regrets. I am proud of what I’ve been able to do and for me, to wish for what might have been, to wish for some hypothetical, abstract notion of “healthy,” chips away at what I have done.
For thirty years I have lived my life in extremes, and in the brief periods where things are stable I catch glimpses of what it would be like to live somewhere closer to the middle. So maybe that would be me minus illness, someone less extreme? But that could also mean someone with less determination or, as my husband says about me when I am exasperating, someone less feisty.
And I don’t know that I would want to make that compromise. My biggest strengths are indeed my biggest weaknesses and while illness may amplify those, I don’t think I’d want to be me without them.
Saturday, February 06, 2010
Give and Take
Selena at Oh My Aches and Pains is hosting the next edition of Patients For A Moment, the patient blog carnival.
In the spirit of Valentine’s Day and all things related to love, she posed the following question:
Love? Hate? What are the four letter words you use to describe your life with chronic illness?
I’ve been thinking a lot about those two words, love and hate, and how they figure into my perspective. After careful consideration, I don’t think either of them are the four-letter words I’d choose to describe my life with chronic illness.
Certainly, they are a part of my life. I’m not trying to pretend otherwise.
For instance, I don’t like when I have to miss things or cancel much-anticipated plans or let people down when I am sick. I dislike how overwhelmed I get when things are acute and work and frustration and guilt pile up, and I cannot take anything for granted, including the small things healthy people wouldn’t have to worry about. I don’t like that my first intact childhood memory is from a surgery when I was a toddler, and that I can mark many holidays depending on which hospital I was in and for how long.
But even in the moments when all the varied losses seem like more, they are usually smaller grievances. Hate is too strong a word. Or perhaps there is enough resignation (or experience?) built in after three decades that it does not need to escalate to that point.
I love that despite illness I am doing many things I am passionate about and have created a life that is (too) full. I am fortunate to have found somewhat of a balance between what I need to do for my body and what I need to do for my mind.
I love that after 29 years of surgeries, infections, and setbacks I am in a relatively good groove with the best doctors available to manage my definitive diagnoses. I love that after 23 years of near-constant high-dose steroid therapy I have a break, and the highs and lows are much smoother.
I love that I am married to a person who sees me as a whole person and not a constellation of symptoms, whose compassion and selflessness is intuitive and instinctive.
I love that there are people who know me as a relative or friend, a writer or editor, a professor or consultant, but don’t automatically think of me as “sick.”
And I appreciate that when things are tough and crises occur, they do think of me as sick and understand my situation enough to know homeostasis will return at some point.
So if I had to pick other four-letter words to describe life with illness, mine would “give” and “take.” Illness takes away little pieces of the identity I’ve worked hard to build and I push back and reclaim them. Illness makes demands on me and those in my life and we acquiesce when it is prudent to, and move forward despite those demands we can.
I am no Pollyanna and I won’t pretend that I wouldn’t love to be healthy. But, I love that I do not have to hate my illnesses…that would be giving them too much.
In the spirit of Valentine’s Day and all things related to love, she posed the following question:
Love? Hate? What are the four letter words you use to describe your life with chronic illness?
I’ve been thinking a lot about those two words, love and hate, and how they figure into my perspective. After careful consideration, I don’t think either of them are the four-letter words I’d choose to describe my life with chronic illness.
Certainly, they are a part of my life. I’m not trying to pretend otherwise.
For instance, I don’t like when I have to miss things or cancel much-anticipated plans or let people down when I am sick. I dislike how overwhelmed I get when things are acute and work and frustration and guilt pile up, and I cannot take anything for granted, including the small things healthy people wouldn’t have to worry about. I don’t like that my first intact childhood memory is from a surgery when I was a toddler, and that I can mark many holidays depending on which hospital I was in and for how long.
But even in the moments when all the varied losses seem like more, they are usually smaller grievances. Hate is too strong a word. Or perhaps there is enough resignation (or experience?) built in after three decades that it does not need to escalate to that point.
I love that despite illness I am doing many things I am passionate about and have created a life that is (too) full. I am fortunate to have found somewhat of a balance between what I need to do for my body and what I need to do for my mind.
I love that after 29 years of surgeries, infections, and setbacks I am in a relatively good groove with the best doctors available to manage my definitive diagnoses. I love that after 23 years of near-constant high-dose steroid therapy I have a break, and the highs and lows are much smoother.
I love that I am married to a person who sees me as a whole person and not a constellation of symptoms, whose compassion and selflessness is intuitive and instinctive.
I love that there are people who know me as a relative or friend, a writer or editor, a professor or consultant, but don’t automatically think of me as “sick.”
And I appreciate that when things are tough and crises occur, they do think of me as sick and understand my situation enough to know homeostasis will return at some point.
So if I had to pick other four-letter words to describe life with illness, mine would “give” and “take.” Illness takes away little pieces of the identity I’ve worked hard to build and I push back and reclaim them. Illness makes demands on me and those in my life and we acquiesce when it is prudent to, and move forward despite those demands we can.
I am no Pollyanna and I won’t pretend that I wouldn’t love to be healthy. But, I love that I do not have to hate my illnesses…that would be giving them too much.
Wednesday, January 28, 2009
Health Care Reform: Is the Timing Right?
A few months ago, I wrote about the economic impact of a health care system run amok, calling it the “other crisis.” When we're too sick to participate in the workforce, when our employers can't keep up with skyrocketing costs, when preventable diseases go unchecked and result in costly complications, we all pay the price.
Now, with the recession dominating headlines and the widely circulated fear that health care reform will take a backseat to the economy, it’s easy to dismiss the urgency for significant reform.
Yet I’d argue the stakes are greater than ever, and that now is the time—economic health is inextricably linked to our ability to access and maintain appropriate medical care. I believe this in terms of existing chronic illness, of course, but that’s just one part of it.
Why do I write this today? Because today was the first in a year-long series of “Summit Conversations” sponsored by the America’s Agenda Health Care Education Fund. These consensus-building talks bring together a diverse group of entities—politicians, policy-makers, labor unions, big Pharma. Very rarely do we see these groups united under a common goal.
The January 28th Summit talk was held at the University of Miami and hosted by President Donna Shalala. In a recent Miami Herald op-ed, Dr. Shalala wrote,
“The Summit Conversations commence at an opportune time. Recent polls show three-quarters of Americans expect major healthcare reform legislation to be passed in President Barack Obama's first term. Democratic leaders in Congress are reaching across the aisle for bipartisan support, and there are promising responses from business and labor.”
Let’s hope she is right, that this is the right time for the right groups of people to come together, build consensus about reform, and turn that consensus into change.
In so many ways, we can’t afford for that not to happen.
***
In other news, be sure to check out some of the medical blogosphere’s best this week: a fantastic Grand Rounds is up at ChronicBabe, and this month’s pain-blog carnival is up at How To Cope With Pain.
Now, with the recession dominating headlines and the widely circulated fear that health care reform will take a backseat to the economy, it’s easy to dismiss the urgency for significant reform.
Yet I’d argue the stakes are greater than ever, and that now is the time—economic health is inextricably linked to our ability to access and maintain appropriate medical care. I believe this in terms of existing chronic illness, of course, but that’s just one part of it.
Why do I write this today? Because today was the first in a year-long series of “Summit Conversations” sponsored by the America’s Agenda Health Care Education Fund. These consensus-building talks bring together a diverse group of entities—politicians, policy-makers, labor unions, big Pharma. Very rarely do we see these groups united under a common goal.
The January 28th Summit talk was held at the University of Miami and hosted by President Donna Shalala. In a recent Miami Herald op-ed, Dr. Shalala wrote,
“The Summit Conversations commence at an opportune time. Recent polls show three-quarters of Americans expect major healthcare reform legislation to be passed in President Barack Obama's first term. Democratic leaders in Congress are reaching across the aisle for bipartisan support, and there are promising responses from business and labor.”
Let’s hope she is right, that this is the right time for the right groups of people to come together, build consensus about reform, and turn that consensus into change.
In so many ways, we can’t afford for that not to happen.
***
In other news, be sure to check out some of the medical blogosphere’s best this week: a fantastic Grand Rounds is up at ChronicBabe, and this month’s pain-blog carnival is up at How To Cope With Pain.
Wednesday, July 30, 2008
Mid-Week Resources
Looking to dig into some good chronic illness resources to get you to the weekend? The July Pain-Blog carnival is now up at How To Cope With Pain, and remember, new bloggers are always welcome to contribute their best posts at the end of each month.
Also, Leslie at Getting Closer to Myself has a call for submissions about living with chronic illness as a younger woman. As the author of a new book all about chronic illness in your twenties and thirties, I'm thrilled to see growing attention towards this phenomenon.
Also, Leslie at Getting Closer to Myself has a call for submissions about living with chronic illness as a younger woman. As the author of a new book all about chronic illness in your twenties and thirties, I'm thrilled to see growing attention towards this phenomenon.
Friday, May 30, 2008
Interviews, Inspiration, and Links
I am used to being the one conducting interviews, so I was anxious to see how my Author Q&A with Library Journal went. Check it out here.
Since we're (somewhat) on the topic of writing, I read a great essay in the Chronicle of Higher Education. It discusses the process that results in published work, a process that, from the outside, may not appear as arduous and productive as it really is:
"What does it look like to do intellectual work? What does it look like to have an insight? To formulate a theory? To solve a philosophical problem? What does it take to get to the point at which you're ready to sit down and write something, ready to present something to the world?
Experience tells me that sometimes it looks like playing Spider Solitaire. Or twirling one's hair, talking to oneself, or sitting stock still and staring into space...
...We go through the motions that have led us, in the past, to cerebral success. We can no more force ourselves to make an intellectual breakthrough than we can will ourselves to sleep. All we can do is prepare the environment and perform the rituals associated with thinking."
For anyone logging long hours doing work that isn't always visible in conventional ways, be sure to read it. Or pass it on to the next person who asks you, "So what do you do all day?"
***
So I'm a day late posting, but here's hoping the expanded edition of the May Pain-Blog Carnival will give you some good weekend reading. The best posts of the month are featured, and new bloggers are always welcome to participate.
Since we're (somewhat) on the topic of writing, I read a great essay in the Chronicle of Higher Education. It discusses the process that results in published work, a process that, from the outside, may not appear as arduous and productive as it really is:
"What does it look like to do intellectual work? What does it look like to have an insight? To formulate a theory? To solve a philosophical problem? What does it take to get to the point at which you're ready to sit down and write something, ready to present something to the world?
Experience tells me that sometimes it looks like playing Spider Solitaire. Or twirling one's hair, talking to oneself, or sitting stock still and staring into space...
...We go through the motions that have led us, in the past, to cerebral success. We can no more force ourselves to make an intellectual breakthrough than we can will ourselves to sleep. All we can do is prepare the environment and perform the rituals associated with thinking."
For anyone logging long hours doing work that isn't always visible in conventional ways, be sure to read it. Or pass it on to the next person who asks you, "So what do you do all day?"
***
So I'm a day late posting, but here's hoping the expanded edition of the May Pain-Blog Carnival will give you some good weekend reading. The best posts of the month are featured, and new bloggers are always welcome to participate.
Wednesday, April 30, 2008
April's Best...
A quick note to say the April Pain-Blog carnival is up here, featuring the month's best posts.
Also, starting next Monday, HowToCopewithPain will be hosting Monday Chats, which are real-time moderated discussions from 12-1, and frequently-moderated the rest of Mondays. Stop by to join the discussion. This Monday's topic: What's your biggest challenge and how to you deal with it?
Speaking of contributing, check out the details of the 2nd Annual DiabetesMine Design Challenge, "a competition designed to foster innovation in diabetes design and encourage creative new tools that will improve life with diabetes."
Also, starting next Monday, HowToCopewithPain will be hosting Monday Chats, which are real-time moderated discussions from 12-1, and frequently-moderated the rest of Mondays. Stop by to join the discussion. This Monday's topic: What's your biggest challenge and how to you deal with it?
Speaking of contributing, check out the details of the 2nd Annual DiabetesMine Design Challenge, "a competition designed to foster innovation in diabetes design and encourage creative new tools that will improve life with diabetes."
Tuesday, April 29, 2008
Library Journal and Grand Rounds...
So I'm jumping into the political fray courtesy of an interesting press call today but while that post is percolating, here are a couple links hot off the presses.
Library Journal gave Life Disrupted a starred review in their May 1 issue. Check out it online here!
Doc Gurley hosts a knock-down, drag-out edition of Grand Rounds this week--check out the multitude of heavy-hitting posts.
Library Journal gave Life Disrupted a starred review in their May 1 issue. Check out it online here!
Doc Gurley hosts a knock-down, drag-out edition of Grand Rounds this week--check out the multitude of heavy-hitting posts.
Tuesday, April 22, 2008
It's Official!
Amy Tenderich of DiabetesMine.com has posted the first official review of Life Disrupted. Check it out here.
While you're clicking away, be sure to read this week's Grand Rounds, hosted by Dr. Val Jones at Revolution Health. As always, it's a compilation of the best medical writing out there, and this week's entries are certainly compelling!
Stay tuned for a scintillating look at the incidental economics of illness...
While you're clicking away, be sure to read this week's Grand Rounds, hosted by Dr. Val Jones at Revolution Health. As always, it's a compilation of the best medical writing out there, and this week's entries are certainly compelling!
Stay tuned for a scintillating look at the incidental economics of illness...
Tuesday, April 08, 2008
Some Life Disrupted Literary Love…
It’s pre-pub time, when advance reader quotes and reviews for Life Disrupted start coming in and all of the sudden, the book that lived in my head and then in my laptop all these months is starting to feel real. To that end, the advance quotes that appear on and in the book are now available right here, so check them out!
I will also place them in a more permanent position on my sidebar. Stay tuned for lots of other good book stuff and links in the pipeline, and I promise the final cover image and pre-order links will be highlighted soon!
***
In other literary news, did you know April is National Poetry Month? Clearly you’re aware of how much I support writing as an expressive and valuable resource for patients, so I am happy to pass along that MyMigraineConnection.com is calling for submissions for its 2008 Putting Our Heads Together Poetry contest. If you’re inspired to help spread awareness of migraine disease and chronic headaches, check out the contest details here. The deadline is April 21, so start writing!
***
In keeping with the writing theme, check out this week's Grand Rounds, a compilation of the best writing in the medical blogosphere, hosted this week by Dr. Wes.
I will also place them in a more permanent position on my sidebar. Stay tuned for lots of other good book stuff and links in the pipeline, and I promise the final cover image and pre-order links will be highlighted soon!
***
In other literary news, did you know April is National Poetry Month? Clearly you’re aware of how much I support writing as an expressive and valuable resource for patients, so I am happy to pass along that MyMigraineConnection.com is calling for submissions for its 2008 Putting Our Heads Together Poetry contest. If you’re inspired to help spread awareness of migraine disease and chronic headaches, check out the contest details here. The deadline is April 21, so start writing!
***
In keeping with the writing theme, check out this week's Grand Rounds, a compilation of the best writing in the medical blogosphere, hosted this week by Dr. Wes.
Wednesday, March 26, 2008
Mid-Week Reading: Shared Experiences and Health Social Networking
It’s that time again! The March Pain-Blog Carnival is now posted at How to Cope with Pain, featuring the month's best posts about living with chronic pain. New bloggers are always welcome to contribute.
Speaking of sharing insights and experience, I’m sure you’ve come across this New York Times Magazine article called “Practicing Patients.” It discusses PatientsLikeMe, a web community which “seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.”
For patients with diseases like Parkinson’s, MS and AIDS, real-time discussion and analysis of treatment methods, dosages, and relatives success can provide invaluable—and hard to find—information.
This has been a big week in the health social networking world—Healia.com, the health search engine I’ve written about before in conjunction with social networking, just announced the launch of Healia Communities. The site is “a free online health community that enables people to get personal support for their health decisions from peers and experienced health professionals … Healia Communities allows people to share their health knowledge, experiences and favorite resources; provide personal support and connect with people sharing the same health concerns; and get answers to their questions from health experts,” according to the press release.
More than 200 health communities exist right now, and a feature that distinguishes the site from other patient disease sites and groups that connect patients with each other is the additional access to health professionals who can also help answer questions.
What dedicated blog carnivals and online communities like the two mentioned above point to is the ever-increasing influence of technology over the patient experience, a vital exchange of experience and practice with the potential to do much to improve how we manage disease. Check them out and see if they are the right fit for your needs.
Speaking of sharing insights and experience, I’m sure you’ve come across this New York Times Magazine article called “Practicing Patients.” It discusses PatientsLikeMe, a web community which “seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.”
For patients with diseases like Parkinson’s, MS and AIDS, real-time discussion and analysis of treatment methods, dosages, and relatives success can provide invaluable—and hard to find—information.
This has been a big week in the health social networking world—Healia.com, the health search engine I’ve written about before in conjunction with social networking, just announced the launch of Healia Communities. The site is “a free online health community that enables people to get personal support for their health decisions from peers and experienced health professionals … Healia Communities allows people to share their health knowledge, experiences and favorite resources; provide personal support and connect with people sharing the same health concerns; and get answers to their questions from health experts,” according to the press release.
More than 200 health communities exist right now, and a feature that distinguishes the site from other patient disease sites and groups that connect patients with each other is the additional access to health professionals who can also help answer questions.
What dedicated blog carnivals and online communities like the two mentioned above point to is the ever-increasing influence of technology over the patient experience, a vital exchange of experience and practice with the potential to do much to improve how we manage disease. Check them out and see if they are the right fit for your needs.
Tuesday, March 04, 2008
A Fresh New Grand Rounds is Up at ChronicBabe
And I do mean fresh, considering this week's theme is "New Beginnings."
Jenni Prokopy, founder and editrix of chronicbabe.com, "a site for young women with chronic illness who strive to live well in spite of health-related limitations...to be babes!" did a great job compiling diverse and compelling perspectives on fresh starts--with spring on the horizon, it's perfect timing!
Jenni Prokopy, founder and editrix of chronicbabe.com, "a site for young women with chronic illness who strive to live well in spite of health-related limitations...to be babes!" did a great job compiling diverse and compelling perspectives on fresh starts--with spring on the horizon, it's perfect timing!
Wednesday, February 27, 2008
Mid-Week Refresher
Need some quality reading to get you through the rest of the week? Check out February’s Pain-Blog carnival at How to Cope with Pain. During the last week of every month the best posts of that month are featured, and remember, new bloggers are always welcome to contribute!
While you’re at it, be sure to visit Science Roll for this week’s edition of Grand Rounds. This week’s theme is “The Future of Medicine”—see what’s in store!
While you’re at it, be sure to visit Science Roll for this week’s edition of Grand Rounds. This week’s theme is “The Future of Medicine”—see what’s in store!
Wednesday, January 30, 2008
Carnivals, Links, Nebulizers...
Increased time spent with my trusty nebulizer plus increased deadlines with a dash of extended family functions=what?
You guessed it, even more time with nebulizers, chest PT, and new meds. Oh, and it partially explains the lack of posts the past week or so, despite the ideas teeming around in my cluttered head.
However, I do have some links to quality reading to share. First off, it's the end of the month, which means the monthly Pain-Blog carnival is up at How to Cope with Pain. The best posts of each month are featured, and new bloggers are always welcome to contribute.
Also, I've written before about patient authority and the right to say "No" to procedures. (I've also left the hospital against medical advice before, but that's a whole other story, and turns out I was totally right to do so.) Most times, though, I do what I'm told even if I don't like it--because let's be serious, is there usually a lot of appeal to invasive or otherwise uncomfortable medical procedures?--if it's something my doctors and I feel will best give us the information we need to improve my health. Anyway, I mention all this because I came across an interesting Explainer piece on Slate.com about patients' rights and consenting to medical procedures. Check it out if you have a minute.
You guessed it, even more time with nebulizers, chest PT, and new meds. Oh, and it partially explains the lack of posts the past week or so, despite the ideas teeming around in my cluttered head.
However, I do have some links to quality reading to share. First off, it's the end of the month, which means the monthly Pain-Blog carnival is up at How to Cope with Pain. The best posts of each month are featured, and new bloggers are always welcome to contribute.
Also, I've written before about patient authority and the right to say "No" to procedures. (I've also left the hospital against medical advice before, but that's a whole other story, and turns out I was totally right to do so.) Most times, though, I do what I'm told even if I don't like it--because let's be serious, is there usually a lot of appeal to invasive or otherwise uncomfortable medical procedures?--if it's something my doctors and I feel will best give us the information we need to improve my health. Anyway, I mention all this because I came across an interesting Explainer piece on Slate.com about patients' rights and consenting to medical procedures. Check it out if you have a minute.
Thursday, November 29, 2007
Autobiography of a Face (and November Carnival Ready)
Before I get into anything else, let me make the following premise: In no way am I comparing a measly two weeks with a swollen jaw and a liquid/pureed diet to a potentially terminal cancer, removal of one-third of the jaw, and a lifetime of pain and reconstructive surgery.
That story belongs to the late acclaimed poet and writer Lucy Grealy, and it is found in her remarkably candid memoir, Autobiography of a Face. I first read this for a nonfiction book workshop in my MFA program and of all the books I read for the course, this is one of the ones I could never forget.
Grealy writes about truth, sickness, suffering, beauty, perfection, and loneliness. The facial disfigurement she experienced after her tumor was removed and the endless rounds of hospitalizations, surgeries, and unmet expectations that followed are not rendered in strokes of sentimentality or self-pity. As a narrator, Grealy is at once irascible and inspiring, frustrating and courageous, determined yet jaded. She doesn’t hide her flaws, both the physical as well as the emotional.
I’ll be honest, some aspects of the book irritated me—why, for example, does her twin sister only come up once or twice in the whole story?—but even beyond the dramatic events and the soul-churning upheavals, the writing itself is beautiful and lyrical.
I was reminded of this book at several points during the last few weeks. For Lucy, opening her mouth wide was an excruciating ordeal, one made even more awful given how much dental and reconstructive work she needed. Eating was a daily exercise in futility; not only was it hard to open her mouth, but she lost many teeth to her various surgeries and complications. These things paled in comparison with the taunts of her schoolmates and the devastating impact looking different had on her psyche, but they had an impact nonetheless. Simple things like swallowing, chewing, laughing or yawning should not have to be conscious things.
Again, clearly two weeks of chicken broth and liquid food does not give me any rights to claim kinship or understanding. I know that. But if nothing else, recent events have rekindled my respect for a writer who died too young, whose words contain grace and eloquence even when they are baring unflattering truths, and whose perception is unsettling:
“I used to think truth was eternal, that once I knew, once I saw, it would be with me forever, a constant by which everything else could be measured. I know now that this isn’t so, that most truths are inherently unretainable, that we have to work hard all our lives to remember the most basic things. Society is no help. It tells us again and again that we can most be ourselves by acting and looking like someone else, only to leave our original faces behind to turn into ghosts that will inevitably resent and haunt us…It suddenly occurred to me that it is no mistake when sometimes in films and literature the dead know they are dead only after being offered that most irrefutable proof: they can no longer see themselves in the mirror,” (222).
***
Since we’re on the subject of pain (excuse the transparent segue here), How to Cope with Pain is now offering a monthly Pain-Blog Carnival during the last week of every month, to include each month's best posts. New bloggers are always welcome to contribute. Check out November’s edition here. You may just recognize someone here and there...
That story belongs to the late acclaimed poet and writer Lucy Grealy, and it is found in her remarkably candid memoir, Autobiography of a Face. I first read this for a nonfiction book workshop in my MFA program and of all the books I read for the course, this is one of the ones I could never forget.
Grealy writes about truth, sickness, suffering, beauty, perfection, and loneliness. The facial disfigurement she experienced after her tumor was removed and the endless rounds of hospitalizations, surgeries, and unmet expectations that followed are not rendered in strokes of sentimentality or self-pity. As a narrator, Grealy is at once irascible and inspiring, frustrating and courageous, determined yet jaded. She doesn’t hide her flaws, both the physical as well as the emotional.
I’ll be honest, some aspects of the book irritated me—why, for example, does her twin sister only come up once or twice in the whole story?—but even beyond the dramatic events and the soul-churning upheavals, the writing itself is beautiful and lyrical.
I was reminded of this book at several points during the last few weeks. For Lucy, opening her mouth wide was an excruciating ordeal, one made even more awful given how much dental and reconstructive work she needed. Eating was a daily exercise in futility; not only was it hard to open her mouth, but she lost many teeth to her various surgeries and complications. These things paled in comparison with the taunts of her schoolmates and the devastating impact looking different had on her psyche, but they had an impact nonetheless. Simple things like swallowing, chewing, laughing or yawning should not have to be conscious things.
Again, clearly two weeks of chicken broth and liquid food does not give me any rights to claim kinship or understanding. I know that. But if nothing else, recent events have rekindled my respect for a writer who died too young, whose words contain grace and eloquence even when they are baring unflattering truths, and whose perception is unsettling:
“I used to think truth was eternal, that once I knew, once I saw, it would be with me forever, a constant by which everything else could be measured. I know now that this isn’t so, that most truths are inherently unretainable, that we have to work hard all our lives to remember the most basic things. Society is no help. It tells us again and again that we can most be ourselves by acting and looking like someone else, only to leave our original faces behind to turn into ghosts that will inevitably resent and haunt us…It suddenly occurred to me that it is no mistake when sometimes in films and literature the dead know they are dead only after being offered that most irrefutable proof: they can no longer see themselves in the mirror,” (222).
***
Since we’re on the subject of pain (excuse the transparent segue here), How to Cope with Pain is now offering a monthly Pain-Blog Carnival during the last week of every month, to include each month's best posts. New bloggers are always welcome to contribute. Check out November’s edition here. You may just recognize someone here and there...
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