To my dear friend, my kindred spirit
I stepped outside, the brilliant autumn leaves crunching under my feet. An acute awareness of time hid beneath every breath. It must be the hour, the minute, the second.
My heart and mind were in harmony with a tuning A played by a lone instrument in the streaming light and shadows of a church sanctuary in Manhattan. The orchestra matched that one pitch, and then showered the room with fifths above and below that tone.
It was time to begin. I sensed the anticipation as if I had the best pew.
As I played Frisbee with Blu, the rhythm and counter-melodies and harmonies of Bach stirred within. I heard the lush, warm vibrancy of my dear friend's violin as he caressed the strings with his bow. Passion was there in every strong, rapid attack of infinite intervals. This was life, at its fullest.
What time was it? What place was it? Where was I?
I was in the front row.
It was Kairos.
Monday, October 26, 2009
Sunday, October 25, 2009
Afraid Of The Dark
It is way past midnight. I lie on the love seat, the closest thing I have to a full size couch. My dog, Blu, is stretched out across my legs, sound asleep.
I am reluctant to turn off the television. I don't want to go to bed. Recently, when it is totally quiet and very late, I feel a deep, sad sense of fear.
I am copying the 700 some pages of medical records from my former doctor, before I deliver them to my new doctor. I didn't know I would have this opportunity not only to read my records, but to protect myself by copying them. I need to do this, but the emotional price is high.
My records are filled with "inaccuracies" from all sources. My own doctor has made disparaging comments about me as a person and about the serious medical symptoms with which I must live. They are tacked on to the bottom of report pages from office visits.
He has been my internist and endocrinologist for seventeen years. As I go through these records, which also include reports from outside doctors paid by my disability insurance company, I want to scream -- but I do not want to scare my neighbors. I have cried and cried and cried. I trusted this man, but this trust was not warranted.
The further back I go in test records, the more I am aware of just how negligent he was. He missed the markers, recorded in emergency room visits over years, of a serious, degenerative disorder of the autonomic nervous system of the brain. He didn't even recognize the symptoms of this illness after it was diagnosed by a reputable cardiologist with a tilt table test. One time, his nurse threatened to call the police when I had collapsed from this disabling condition (called Postural Orthostatic Tachycardia Syndrome).
Worse than all of this is what I would call malignant neglect. For over twelve years, he did absolutely nothing about the increasing warning signs of heart disease. It shows up throughout my bloodwork. My new doctor was horrified by my cholesterol and triglyceride numbers, as they are in the upper stratosphere (six years ago, my cholesterol was 339 and my triglyerides were 396). Even without these numbers, diabetics have five times the normal risk for heart attacks.
My new doctor started me on medication and aspirin therapy the very day I first met him. Since I first was made aware of these test results, I had already completely changed my diet and eat enough oatmeal and walnuts that sometimes they appear in my dreams. I lost weight. I exercise. But there is hardly any change. In June of 2008, I spent 30 hours in our local hospital with the symptoms many women experience with heart attacks, but they could not find a cause. Of course, they stopped short of doing an angiogram, because my internist did not think it was necessary.
When it is so quiet and dark, the fear and the sadness is overwhelming. Did I find the new doctor soon enough? Have I already had a silent heart attack (as the new doctor told me I may have had)? Has my life span been greatly shortened by the former, uncaring doctor?
Will I ever get to finish copyrighting and recording the over seventy songs I have written? I want my songs to be heard. I want to record my voice singing them. I ran out of money for recording two and a half years ago. How will I ever find the money to continue?
Will I finish my book? I am so very ill, I can do almost nothing. Will I be able to survive on my own? Will I be able to be of support to my children, who both have the same long term illness that started all this for me? I own nothing. What will become of me?
I have great difficulty writing, when I am paralyzed by fear.
And so, I will simply post the words to one of my favorite songs, knowing that no one will have any idea of the tune, dynamics, accompaniment, or vocal range.
But tonight, I feel much as I did when I wrote this song. It is copyrighted, so I at least know it is mine to post. You can try to imagine the song, but the feelings are all there.
WHAT I MEAN TO SAY
(c) 2006 Mary Lou Worster Anderson
What I mean to say, behind all these tears,
What I mean to say, that no one ever hears
Is, "I am lost here, all alone,
And I can't even find my way home."
What I mean to sing, behind all these sighs,
What I mean to sing and shout across the skies
Is, "I don't even know why, and I don't understand.
Won't somebody, please, take my hand?"
What I need to feel and what I long to know,
For this, I would leave all I have and walk each dusty road
Just to find love that stays
And doesn't run away.
What I mean to pray, behind these feeble words,
Is, "Guide me every day, for life is so absurd,
For I am lost here, all alone,
And I can't even find my way home."
To my readers, whoever you are, may God bless you all.
I am reluctant to turn off the television. I don't want to go to bed. Recently, when it is totally quiet and very late, I feel a deep, sad sense of fear.
I am copying the 700 some pages of medical records from my former doctor, before I deliver them to my new doctor. I didn't know I would have this opportunity not only to read my records, but to protect myself by copying them. I need to do this, but the emotional price is high.
My records are filled with "inaccuracies" from all sources. My own doctor has made disparaging comments about me as a person and about the serious medical symptoms with which I must live. They are tacked on to the bottom of report pages from office visits.
He has been my internist and endocrinologist for seventeen years. As I go through these records, which also include reports from outside doctors paid by my disability insurance company, I want to scream -- but I do not want to scare my neighbors. I have cried and cried and cried. I trusted this man, but this trust was not warranted.
The further back I go in test records, the more I am aware of just how negligent he was. He missed the markers, recorded in emergency room visits over years, of a serious, degenerative disorder of the autonomic nervous system of the brain. He didn't even recognize the symptoms of this illness after it was diagnosed by a reputable cardiologist with a tilt table test. One time, his nurse threatened to call the police when I had collapsed from this disabling condition (called Postural Orthostatic Tachycardia Syndrome).
Worse than all of this is what I would call malignant neglect. For over twelve years, he did absolutely nothing about the increasing warning signs of heart disease. It shows up throughout my bloodwork. My new doctor was horrified by my cholesterol and triglyceride numbers, as they are in the upper stratosphere (six years ago, my cholesterol was 339 and my triglyerides were 396). Even without these numbers, diabetics have five times the normal risk for heart attacks.
My new doctor started me on medication and aspirin therapy the very day I first met him. Since I first was made aware of these test results, I had already completely changed my diet and eat enough oatmeal and walnuts that sometimes they appear in my dreams. I lost weight. I exercise. But there is hardly any change. In June of 2008, I spent 30 hours in our local hospital with the symptoms many women experience with heart attacks, but they could not find a cause. Of course, they stopped short of doing an angiogram, because my internist did not think it was necessary.
When it is so quiet and dark, the fear and the sadness is overwhelming. Did I find the new doctor soon enough? Have I already had a silent heart attack (as the new doctor told me I may have had)? Has my life span been greatly shortened by the former, uncaring doctor?
Will I ever get to finish copyrighting and recording the over seventy songs I have written? I want my songs to be heard. I want to record my voice singing them. I ran out of money for recording two and a half years ago. How will I ever find the money to continue?
Will I finish my book? I am so very ill, I can do almost nothing. Will I be able to survive on my own? Will I be able to be of support to my children, who both have the same long term illness that started all this for me? I own nothing. What will become of me?
I have great difficulty writing, when I am paralyzed by fear.
And so, I will simply post the words to one of my favorite songs, knowing that no one will have any idea of the tune, dynamics, accompaniment, or vocal range.
But tonight, I feel much as I did when I wrote this song. It is copyrighted, so I at least know it is mine to post. You can try to imagine the song, but the feelings are all there.
WHAT I MEAN TO SAY
(c) 2006 Mary Lou Worster Anderson
What I mean to say, behind all these tears,
What I mean to say, that no one ever hears
Is, "I am lost here, all alone,
And I can't even find my way home."
What I mean to sing, behind all these sighs,
What I mean to sing and shout across the skies
Is, "I don't even know why, and I don't understand.
Won't somebody, please, take my hand?"
What I need to feel and what I long to know,
For this, I would leave all I have and walk each dusty road
Just to find love that stays
And doesn't run away.
What I mean to pray, behind these feeble words,
Is, "Guide me every day, for life is so absurd,
For I am lost here, all alone,
And I can't even find my way home."
To my readers, whoever you are, may God bless you all.
Wednesday, October 21, 2009
Blank Verse
Shakespeare has long been one of my favorite writers in the English language. Shakespearian verse, blank verse, is poetry, dance, and song all unified into one exquisite expression of the human experience. I love to read it. I love to hear it read. I love to see a good production of one of Shakespeare's plays.
In this context, "blank verse" has such an elegant connotation.
What I have been experiencing in the past few weeks is something quite different: not "blank verse" but "blank mind." With the lessening of each's day light, I have found myself slipping into an incrementally worse depression and fatigue. Part of it may still be residual weakness from two and a half weeks of whatever it was that produced a fever and an asthmatic cough.
However, I am also in the middle of changing doctors, and this experience has felt like a huge weight on my soul. I have had to procure the 700 plus pages of my medical records from my former doctor to take to my new doctor. They said they didn't want to pay to mail them, as it would have been too expensive. So, even though I do not have a car, I had to find a time when my daughter could pick them up for me.
This has been a blessing in disguise, though it seemed like a curse. This is my one opportunity in 25 years to make copies of my own medical records. If I request copies from their office, they will charge me 75 cents a page, which is totally prohibitive to me.
In looking through these records, I have been clobbered with depression and shock. They are downright inaccurate. There are reports from other doctors hired by my disability insurance company that don't even sound as if they ever spoke with me at all. It reads like someone else's story.
So I am tired down to the depths of my soul. After nineteen years of medical and psychiatric disability, I feel abandoned, completely alone. I feel hopeless, as these little books of false information keep being passed on from doctor to doctor.
Instead of rage or loud anger, which would require some energy, I feel a quiet despair. I am so damn tired of being sick, misunderstood, poorly treated, and lied about. I hope this terrible fatigue of the mind and heart will ease.
Tonight, when I think of "blank verse", I do not think of the beauty of Shakespearian language. Instead, I think of my inability to write anything on my blog for the past weeks. My mind is so blank, so hurt. My blank verse comes from an emptiness of the heart and a loneliness too aching for words.
In this context, "blank verse" has such an elegant connotation.
What I have been experiencing in the past few weeks is something quite different: not "blank verse" but "blank mind." With the lessening of each's day light, I have found myself slipping into an incrementally worse depression and fatigue. Part of it may still be residual weakness from two and a half weeks of whatever it was that produced a fever and an asthmatic cough.
However, I am also in the middle of changing doctors, and this experience has felt like a huge weight on my soul. I have had to procure the 700 plus pages of my medical records from my former doctor to take to my new doctor. They said they didn't want to pay to mail them, as it would have been too expensive. So, even though I do not have a car, I had to find a time when my daughter could pick them up for me.
This has been a blessing in disguise, though it seemed like a curse. This is my one opportunity in 25 years to make copies of my own medical records. If I request copies from their office, they will charge me 75 cents a page, which is totally prohibitive to me.
In looking through these records, I have been clobbered with depression and shock. They are downright inaccurate. There are reports from other doctors hired by my disability insurance company that don't even sound as if they ever spoke with me at all. It reads like someone else's story.
So I am tired down to the depths of my soul. After nineteen years of medical and psychiatric disability, I feel abandoned, completely alone. I feel hopeless, as these little books of false information keep being passed on from doctor to doctor.
Instead of rage or loud anger, which would require some energy, I feel a quiet despair. I am so damn tired of being sick, misunderstood, poorly treated, and lied about. I hope this terrible fatigue of the mind and heart will ease.
Tonight, when I think of "blank verse", I do not think of the beauty of Shakespearian language. Instead, I think of my inability to write anything on my blog for the past weeks. My mind is so blank, so hurt. My blank verse comes from an emptiness of the heart and a loneliness too aching for words.
Wednesday, October 14, 2009
What A Difference
Yesterday, my blog entry, "Surfing the Night", was posted on the website for A Network for Grateful Living. I am amazed how much just seeing it so beautifully laid out, complete with a picture of a computer keyboard, cheered me up. I have been quite ill almost all of the time since posting that last blog.
But every day begins a new page or a new chapter in my life.
I keep thinking of one of the oft said remarks of my dear friend, Bill Smith (don't worry, 12 step folks: he always used his full name. In his obituary, it even said that he was survived by family and many, many friends in aa.).
Bill was a minister's son and a city councilman here in my city. However, this is not how I knew him. I learned these things after he passed away. I knew him as one of our city's oldest and longest sober aa members. When he died over ten years ago, he had thirty-seven years sobriety.
My first aa homegroup, which I joined nineteen years ago, met at 7 a.m. Some of my favorite people in the world were there each day. Bill was there every morning. He was a wise, gentle, spiritual, loving African-American spirit. I thought of him as the shaman of our group.
When people would get greatly discouraged, and, as my health failed, and my career and marriage faded away during the first two years of sobriety, he would often say one of two things -- or sometimes both.
One was, "Don't give up a moment before the miracle happens." This is posted on my Facebook profile.
The other was the one which kept going through my mind today. "WHAT A DIFFERENCE A DAY CAN MAKE!"
Yesterday, I was crying because I felt so completely isolated and unbearably lonely. I felt trapped without a car. Although I can manage to get groceries on the bus on my "better" days, when I get a bad cold or the flu on top of the already barely manageable chronic illnesses, I cannot drive even to get milk. It has been one and a half months since a friend took me to an aa meeting. I have not been to church since Christmas Eve. I have asked the churches with which I have been affiliated for a ride, with no results.
I haven't been able to leave here for any kind of vacation in three and a half years. I long to see the autumn leaves in the hills of the southern tier or Vermont. I want to feel the salt air and the splash of ocean waves. I need the fellowship of other family and friends.
Yesterday, I felt as if I was barely hanging on, about ready to give up on everything, because there has been almost nothing in my life prior to this that prepared me for being this alone. I rode out the rough rocks of the day's climb and was very content to find some peace in sleep.
Today, I received a Facebook request for a new friendship from a fascinating woman in South Africa. She had read my writing on the web site. She wanted to follow what I did and wrote.
I wept. I felt my world moving from the limits of my living room to a much vaster universe. I remembered my experience in India and all the amazing things, good and bad, that I encountered there. I recalled my voyage across the ocean, from New York to Rotterdam, en route to India. Oddest of all my memories are the vivid images of the airports in which we stopped going to and coming from India: Amsterdam, Paris, Geneva, Kuwait, Bombay, Varanasi, New Dehli, Tehran, Beirut, Istanbul, Frankport, London, LaGuardia, and home again to Corning-Elmira.
On this day, I am once again aware that I am part of a larger world. Perhaps my educational background and my years of disability have combined to give me a voice with which to reach out to others and to tell the story of those who have no voice. Perhaps something new will take shape in all of this.
I am grateful for a change of heart.
What a difference a day can make.
But every day begins a new page or a new chapter in my life.
I keep thinking of one of the oft said remarks of my dear friend, Bill Smith (don't worry, 12 step folks: he always used his full name. In his obituary, it even said that he was survived by family and many, many friends in aa.).
Bill was a minister's son and a city councilman here in my city. However, this is not how I knew him. I learned these things after he passed away. I knew him as one of our city's oldest and longest sober aa members. When he died over ten years ago, he had thirty-seven years sobriety.
My first aa homegroup, which I joined nineteen years ago, met at 7 a.m. Some of my favorite people in the world were there each day. Bill was there every morning. He was a wise, gentle, spiritual, loving African-American spirit. I thought of him as the shaman of our group.
When people would get greatly discouraged, and, as my health failed, and my career and marriage faded away during the first two years of sobriety, he would often say one of two things -- or sometimes both.
One was, "Don't give up a moment before the miracle happens." This is posted on my Facebook profile.
The other was the one which kept going through my mind today. "WHAT A DIFFERENCE A DAY CAN MAKE!"
Yesterday, I was crying because I felt so completely isolated and unbearably lonely. I felt trapped without a car. Although I can manage to get groceries on the bus on my "better" days, when I get a bad cold or the flu on top of the already barely manageable chronic illnesses, I cannot drive even to get milk. It has been one and a half months since a friend took me to an aa meeting. I have not been to church since Christmas Eve. I have asked the churches with which I have been affiliated for a ride, with no results.
I haven't been able to leave here for any kind of vacation in three and a half years. I long to see the autumn leaves in the hills of the southern tier or Vermont. I want to feel the salt air and the splash of ocean waves. I need the fellowship of other family and friends.
Yesterday, I felt as if I was barely hanging on, about ready to give up on everything, because there has been almost nothing in my life prior to this that prepared me for being this alone. I rode out the rough rocks of the day's climb and was very content to find some peace in sleep.
Today, I received a Facebook request for a new friendship from a fascinating woman in South Africa. She had read my writing on the web site. She wanted to follow what I did and wrote.
I wept. I felt my world moving from the limits of my living room to a much vaster universe. I remembered my experience in India and all the amazing things, good and bad, that I encountered there. I recalled my voyage across the ocean, from New York to Rotterdam, en route to India. Oddest of all my memories are the vivid images of the airports in which we stopped going to and coming from India: Amsterdam, Paris, Geneva, Kuwait, Bombay, Varanasi, New Dehli, Tehran, Beirut, Istanbul, Frankport, London, LaGuardia, and home again to Corning-Elmira.
On this day, I am once again aware that I am part of a larger world. Perhaps my educational background and my years of disability have combined to give me a voice with which to reach out to others and to tell the story of those who have no voice. Perhaps something new will take shape in all of this.
I am grateful for a change of heart.
What a difference a day can make.
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