Someone once quoted the words, "none of your scars can make me love you less." And I replied, "All of your scars make me love you more."
The rub here is that I don't feel more beautiful because of MY scars. Not my physical scars and not my emotional scars. I even worry that when it comes time to apply for teaching jobs or find a lover, having a large electronic footprint will be a problem in that aspect. This blog, my columns, my tweeting about health, hospice, and patient advocacy.. and of course, my patient stories -- they all feel so vulnerable to me.
I don't write about much of my private life here. Mostly I write about one set of things in my life. But it is enough. And actually, it is a big deal to me because I am an inherently private person. Those of you who have gotten to know me better have said to me, "I never knew how much of you you DON'T share until I found out how much more of you there is to know."
Of course, right? We are so much more than a pixilated identity. We are so so much more than any one thing we can share. And yet- it is hard to remember that. And more over, it is hard for me to remember that as much as I love other people and find them inherently beautiful for their stories and their sharing - I deserve the same.
I work for a great deal of emotional honesty and integration... though sometimes I fail and mess up, the only way I can continue the life I want is to seek out people who want the same life as me. People of integrity, people who are kind and honest, people who love and cherish each other and give back to the world.
Meanwhile- it is still my truth that I never feel as beautiful as the people I have met along my path. I feel vulnerable and out of context... and really -- I only hope someone can look at me and find me valuable and beautiful because of my scars.
Monday, June 27, 2011
Sunday, June 26, 2011
Conversations About Medical Care
I read a really moving blog post today by a cancer patient. In it she described never being given the details or choices of having a "non-treatment" offered to her. In her blog she said, "I walked in with bronchitis and came out with cancer." During her six long years of struggling with cancer, she pointed out that no doctor ever gave her the option of not treating it.
I saw a lovely conversation about "selling medicine" from a group of physicians, they were conflicted about profiting off certain treatments... and some were simply talking about using "gentle paternalism" to convince their patients to do what is in their better interest.
My response to these physicians is - if you are going to "sell medical treatments", even gently, then why aren't you selling the option NOT to get the treatment and the implications of not doing so?" Patients deserve to hear all their viable options. Especially when it comes to cancer treatment. Additionally, many times treatment for chronic diseases is based on the doctor's attitude and experience with it even more than it is to do with how good a treatment it is for a patient. (I will not even go down the being influenced or paid by Pharma road, as we all know this is an ethical issue.)
Every patient should know if their access to health resources is being influenced by religious institutions IF their treatments are being given there. And yes, many hospitals are religious based and there are few other university or state based options available. So this matters. And every patient deserves to know if and how much contributions are being made by a Pharmaceutical company (or other medical device company for a surgeon). We aren't taught to think that way. But it becomes a bigger deal when your treatment matters.
One breast cancer patient found out her breast cancer team was trying to wrap up a long term study and she simply fit one of the under-represented age groups in the study for one the medications they were examining. This made her doubt her treatment and she began to invest in other treatment options and seek second and third opinions elsewhere. Most patients wouldn't know how to do this. And most wouldn't know how to find out if their team of surgeons and oncologists was on a study and what medications they were intending to use. Ultimately she felt they were not intending to use a treatment plan in her better interest and today she is in full remission.
Doctors don't always tell you the full scope of what they are doing. And yes, many of them are champions and want the best for you. How to sort it all out without getting beat down?
Meanwhile, other stories exist where patients who have been pressured, even in their own "better interest" to have treatments - regret the treatments and blame the doctor later. Or they blame themselves for not having ALL the options. Or they simply feel like they weren't part of a team making decision. It is hard to be "empowered" or have "compliance" (which is a word I hate) or committed to one's health when someone is forcing you or even sheistering you into a treatment.
Very few physicians sit down with their patients and say, "If my wife were going through this, I would want her to have all the necessary facts. I would want her to have social support. I would want her to hear ideas that I even disagreed with so I could explain why they might not be a viable option for her." This takes time. And quite frankly, it takes team work. And - most patients don't respond well to "bad news."
It is hard to breathe in through unwanted news. To listen. To HEAR it and not forget it. No one teaches patients how to write it down. To have your doctor write it down and not just hand people a wad of shiny pamphlets or "go to this website it will explain everything."
We as patients and patient advocates, and the entire healthcare community need to be better willing and able to have conversations like this. Not just doctor to doctor or suspicious patient to patient. How to start the conversation? How to have real dialogue, trust, and relationship with our healthcare providers and doctors? How to have two way respect and value?
I saw a lovely conversation about "selling medicine" from a group of physicians, they were conflicted about profiting off certain treatments... and some were simply talking about using "gentle paternalism" to convince their patients to do what is in their better interest.
My response to these physicians is - if you are going to "sell medical treatments", even gently, then why aren't you selling the option NOT to get the treatment and the implications of not doing so?" Patients deserve to hear all their viable options. Especially when it comes to cancer treatment. Additionally, many times treatment for chronic diseases is based on the doctor's attitude and experience with it even more than it is to do with how good a treatment it is for a patient. (I will not even go down the being influenced or paid by Pharma road, as we all know this is an ethical issue.)
Every patient should know if their access to health resources is being influenced by religious institutions IF their treatments are being given there. And yes, many hospitals are religious based and there are few other university or state based options available. So this matters. And every patient deserves to know if and how much contributions are being made by a Pharmaceutical company (or other medical device company for a surgeon). We aren't taught to think that way. But it becomes a bigger deal when your treatment matters.
One breast cancer patient found out her breast cancer team was trying to wrap up a long term study and she simply fit one of the under-represented age groups in the study for one the medications they were examining. This made her doubt her treatment and she began to invest in other treatment options and seek second and third opinions elsewhere. Most patients wouldn't know how to do this. And most wouldn't know how to find out if their team of surgeons and oncologists was on a study and what medications they were intending to use. Ultimately she felt they were not intending to use a treatment plan in her better interest and today she is in full remission.
Doctors don't always tell you the full scope of what they are doing. And yes, many of them are champions and want the best for you. How to sort it all out without getting beat down?
Meanwhile, other stories exist where patients who have been pressured, even in their own "better interest" to have treatments - regret the treatments and blame the doctor later. Or they blame themselves for not having ALL the options. Or they simply feel like they weren't part of a team making decision. It is hard to be "empowered" or have "compliance" (which is a word I hate) or committed to one's health when someone is forcing you or even sheistering you into a treatment.
Very few physicians sit down with their patients and say, "If my wife were going through this, I would want her to have all the necessary facts. I would want her to have social support. I would want her to hear ideas that I even disagreed with so I could explain why they might not be a viable option for her." This takes time. And quite frankly, it takes team work. And - most patients don't respond well to "bad news."
It is hard to breathe in through unwanted news. To listen. To HEAR it and not forget it. No one teaches patients how to write it down. To have your doctor write it down and not just hand people a wad of shiny pamphlets or "go to this website it will explain everything."
We as patients and patient advocates, and the entire healthcare community need to be better willing and able to have conversations like this. Not just doctor to doctor or suspicious patient to patient. How to start the conversation? How to have real dialogue, trust, and relationship with our healthcare providers and doctors? How to have two way respect and value?
Monday, June 20, 2011
All Life is Loss
I smiled when I read a friend's amusing outgoing message today, "When your dreams turn to dust, vacuum."
All life is loss. It is loss just as certain as it is growth and rebirth.
You can take the most boring stick and you can carve it into a work of art. And from that carving will fall wood dust and shavings. And surely you can scoop those up and use them as tinder to start a blazing fire.
When you stick your hand in the dirt it feels like nothing. Yet when you fertilize it and plant seeds in it and water it big beautiful blooms grow from it. Amazing cycles of life and regeneration and growth and death. ALWAYS DEATH and loss. We want to forget that part.
It is so easy to remember our journeys of friendship and joy. Yet we have a harder time enduring or talking about the parts of our journey that are a thousand barren nights of alone. These too happen. It is part of the process. The seasons of pain and birth and healing and growth and dying. I don't always 'get it' I don't always LIKE it. But it happens. It happens to me and you and every living being.
When Tibetan Buddhist creates a sand mandala it is a thing of exquisite beauty. And upon completion are ritually destroyed. Even the sand used to create the mandala is thrown back to nature.. "earth to earth, dust to dust"... the cycles of life continue. They symbolize impermanence.
Loss never feels like it will turn into anything good. It just doesn't. I once heard a voice say to me, "I was protecting you from a terrible career choice" after I was passed over for a promotion that I was FAR more capable of and the woman who replaced me was a woman who used to call me for advice and help. I quit soon after. But the slap in the face was indeed a career wake up for me. Was it loss? Was it dust? Or was it tinder to start the fire? (At the time, I promise you it did NOT feel like a good thing. Decades later, it was the shift the started a progression in time).
All life is loss.
All life is loss. It is loss just as certain as it is growth and rebirth.
You can take the most boring stick and you can carve it into a work of art. And from that carving will fall wood dust and shavings. And surely you can scoop those up and use them as tinder to start a blazing fire.
When you stick your hand in the dirt it feels like nothing. Yet when you fertilize it and plant seeds in it and water it big beautiful blooms grow from it. Amazing cycles of life and regeneration and growth and death. ALWAYS DEATH and loss. We want to forget that part.
It is so easy to remember our journeys of friendship and joy. Yet we have a harder time enduring or talking about the parts of our journey that are a thousand barren nights of alone. These too happen. It is part of the process. The seasons of pain and birth and healing and growth and dying. I don't always 'get it' I don't always LIKE it. But it happens. It happens to me and you and every living being.
When Tibetan Buddhist creates a sand mandala it is a thing of exquisite beauty. And upon completion are ritually destroyed. Even the sand used to create the mandala is thrown back to nature.. "earth to earth, dust to dust"... the cycles of life continue. They symbolize impermanence.
Loss never feels like it will turn into anything good. It just doesn't. I once heard a voice say to me, "I was protecting you from a terrible career choice" after I was passed over for a promotion that I was FAR more capable of and the woman who replaced me was a woman who used to call me for advice and help. I quit soon after. But the slap in the face was indeed a career wake up for me. Was it loss? Was it dust? Or was it tinder to start the fire? (At the time, I promise you it did NOT feel like a good thing. Decades later, it was the shift the started a progression in time).
All life is loss.
Monday, June 13, 2011
We Are Good Enough
As I listen to stories one thing I hear on a repeated loop is, "I'm not good enough." People might not SAY IT that way. Sometimes, actually, I have to listen through ears of love because it comes screaming out as anger anger anger. "Why don't you recognize me as a peer?" "My doctor doesn't give a shit." "My patients use me up." "No one appreciates me."
On and on and on and on. Really though - through it all, more than being undervalued or under appreciated at the core is the FEAR or the belief, the worry that "I'm not good enough."
In most cases, we work for approval. I'll do better. I'll earn your love with grades, with being funny, with applause, with publications, with promotions. When people respond to being criticized, I know in my heart they worry they aren't good enough. They haven't EARNED it yet.
The irony to this is it happens at all levels - from the most elite surgeons to the girl raped at 8. Oddly- the two have more in common than they will ever recognize. When I stand back and watch - the anger, the pain, the behavior of a meth addict (usually frequently to cover their own abusive past) or the heightened success of people - they all have the same stories to tell me. Fear, rejection, not enough, never enough. One crumbled from it, the other kept striving. Always always going for more more more but never FINDING enough approval to fill the hole inside. And you know what. There is never enough meth or food or promotions to fill the void of not being good enough.
There are not enough advanced degrees, or compliments, or hugs, or praise either. There isn't even enough prayer actually. Unless you believe there is somehow infinite mercy, and in that infinite mercy a healing space. And in THAT healing space we are all each others mirror.
And only then, can we see reflected each others true beauty and NOT each others ugly or failure or inabilities.
Today I read this sentence and it resonated with me: “When I forget who I am, I become what I might be” (Tao quoted by Paulo Coelho). I sat with it and realized that it is FINE to say this in a spiritual way- but it another to go through it. When we are losing pieces of our lives and holding on the log to not drown - it is an awful process. When we watch our loved ones die, or are losing our beloved house, or are sharing custody of our kids, or giving up on live goals or dreams. When we are LOSING OURSELVES, WATCHING OUR LIVES SHATTER, it does not feel like a spiritual process at all.
Then I read several blogs by people all who poured out more pain in the form of shared stories.
These stories are important.
Stories heal us. Katie, my hero, says "we write our way back to ourselves." And I agree. I also think when we share our stories with each other, and truly understand each other, and TRY to remember ourselves THROUGH our commonalities AND our realness, we collectively heal and allow each other to heal. We remember we are not only good enough, but we are truly beautiful. We are good.
We don't shame each other. We bear witness to our histories. We don't fear pain or joy. We don't run away from celebration or success. We sit with each other and remember brokenness, like wholeness has a place in life.
On and on and on and on. Really though - through it all, more than being undervalued or under appreciated at the core is the FEAR or the belief, the worry that "I'm not good enough."
In most cases, we work for approval. I'll do better. I'll earn your love with grades, with being funny, with applause, with publications, with promotions. When people respond to being criticized, I know in my heart they worry they aren't good enough. They haven't EARNED it yet.
The irony to this is it happens at all levels - from the most elite surgeons to the girl raped at 8. Oddly- the two have more in common than they will ever recognize. When I stand back and watch - the anger, the pain, the behavior of a meth addict (usually frequently to cover their own abusive past) or the heightened success of people - they all have the same stories to tell me. Fear, rejection, not enough, never enough. One crumbled from it, the other kept striving. Always always going for more more more but never FINDING enough approval to fill the hole inside. And you know what. There is never enough meth or food or promotions to fill the void of not being good enough.
There are not enough advanced degrees, or compliments, or hugs, or praise either. There isn't even enough prayer actually. Unless you believe there is somehow infinite mercy, and in that infinite mercy a healing space. And in THAT healing space we are all each others mirror.
And only then, can we see reflected each others true beauty and NOT each others ugly or failure or inabilities.
Today I read this sentence and it resonated with me: “When I forget who I am, I become what I might be” (Tao quoted by Paulo Coelho). I sat with it and realized that it is FINE to say this in a spiritual way- but it another to go through it. When we are losing pieces of our lives and holding on the log to not drown - it is an awful process. When we watch our loved ones die, or are losing our beloved house, or are sharing custody of our kids, or giving up on live goals or dreams. When we are LOSING OURSELVES, WATCHING OUR LIVES SHATTER, it does not feel like a spiritual process at all.
Then I read several blogs by people all who poured out more pain in the form of shared stories.
These stories are important.
Stories heal us. Katie, my hero, says "we write our way back to ourselves." And I agree. I also think when we share our stories with each other, and truly understand each other, and TRY to remember ourselves THROUGH our commonalities AND our realness, we collectively heal and allow each other to heal. We remember we are not only good enough, but we are truly beautiful. We are good.
We don't shame each other. We bear witness to our histories. We don't fear pain or joy. We don't run away from celebration or success. We sit with each other and remember brokenness, like wholeness has a place in life.
Monday, June 6, 2011
What Is Failure?
I often feel like a failure compared to what I WANT and what I think I SHOULD be. I often struggle with living in the present moment. I struggle to play the cards I've been dealt.
Often, I fee like a failure. There - I said it. Yes - I realize that to someone dealing with what I've got measuring like this needs a new yardstick. I GET IT.
Measuring against the cultural normative is not only what we've been taught, but it is also what many of us judge ourself against. Marriage, house, jobs. What is success? Is it being kind? Is it living in integrity? Is it offering compassion to the world?
When I close my eyes and think about what I truly want - truly want - it isn't so easy. Many of the life options that other people have may or may not be mine in the future, but they are not mine now. I used to call this divine discontent. We can acknowledge it but if I dwell in it too long I will surely never have real joy.
Real joy is when my cat walks on my chest or I have a chai with friends or I laugh at a comedian who is preposterously funny. Real joy is editing someone's essay and seeing how beautiful and brilliant they are. Real joy is watching a friend's non-profit make it and make a difference in the world. Real joy isn't all about ME ME ME. But real joy isn't necessarily self-sacrificing either.
I'm allowed to have joy for myself inside.
I have said recently that I am grateful but not happy. It is true. These last few years have not been happy years. They have been hard for me. They have been a struggle. Right now I am WORKING. I am being dutiful. I am mastering many pieces of myself. But being happy is not one of them. I have been happy in my life - truly happy - but right now is not one of them. And perhaps this is why I have felt like such a failure.
And yet- if I am reaching towards a goal that will truly bless people, truly touch people, and truly make a difference, I am not a failure. I am not. I need to write this down now because I forget it so often. FEELING and BEING are two different things. And FEELING like a failure is merely an emotion of sadness at not having the life I want. But BEING a failure is giving up, giving in to my circumstances. And I haven't. I have NOT DONE THAT.
I need to remind myself. I need to let myself know that even measured against any yard stick at all - not having a family, or a husband, or children at this moment, I can feel a loss, but that doesn't make me a failure. It makes me HUMAN. Many people lose their families along the way and it makes them NO LESS. It makes us all beautifully human. And it is what connects us.
It is important for me to remember this and say it out loud and write it down. It is important for me to recognize that FEELINGS are beautiful and OK but they are not the TRUTH. They are merely part of what makes meaning in my life. I am doing my best. My goals in life include making a difference and contributing to the world. I *would* like to have some cultural normative things in life too. But that I don't right now doesn't diminish me or what I am doing. We are all on our journey.
Often, I fee like a failure. There - I said it. Yes - I realize that to someone dealing with what I've got measuring like this needs a new yardstick. I GET IT.
Measuring against the cultural normative is not only what we've been taught, but it is also what many of us judge ourself against. Marriage, house, jobs. What is success? Is it being kind? Is it living in integrity? Is it offering compassion to the world?
When I close my eyes and think about what I truly want - truly want - it isn't so easy. Many of the life options that other people have may or may not be mine in the future, but they are not mine now. I used to call this divine discontent. We can acknowledge it but if I dwell in it too long I will surely never have real joy.
Real joy is when my cat walks on my chest or I have a chai with friends or I laugh at a comedian who is preposterously funny. Real joy is editing someone's essay and seeing how beautiful and brilliant they are. Real joy is watching a friend's non-profit make it and make a difference in the world. Real joy isn't all about ME ME ME. But real joy isn't necessarily self-sacrificing either.
I'm allowed to have joy for myself inside.
I have said recently that I am grateful but not happy. It is true. These last few years have not been happy years. They have been hard for me. They have been a struggle. Right now I am WORKING. I am being dutiful. I am mastering many pieces of myself. But being happy is not one of them. I have been happy in my life - truly happy - but right now is not one of them. And perhaps this is why I have felt like such a failure.
And yet- if I am reaching towards a goal that will truly bless people, truly touch people, and truly make a difference, I am not a failure. I am not. I need to write this down now because I forget it so often. FEELING and BEING are two different things. And FEELING like a failure is merely an emotion of sadness at not having the life I want. But BEING a failure is giving up, giving in to my circumstances. And I haven't. I have NOT DONE THAT.
I need to remind myself. I need to let myself know that even measured against any yard stick at all - not having a family, or a husband, or children at this moment, I can feel a loss, but that doesn't make me a failure. It makes me HUMAN. Many people lose their families along the way and it makes them NO LESS. It makes us all beautifully human. And it is what connects us.
It is important for me to remember this and say it out loud and write it down. It is important for me to recognize that FEELINGS are beautiful and OK but they are not the TRUTH. They are merely part of what makes meaning in my life. I am doing my best. My goals in life include making a difference and contributing to the world. I *would* like to have some cultural normative things in life too. But that I don't right now doesn't diminish me or what I am doing. We are all on our journey.
Subscribe to:
Posts (Atom)