In the past month and a half of dialysis, a few friends have invited me out, and all but two times I have had to decline. The events always ran too late into the evening, interfering with my hook-up time of between 7 and 9 p.m. Then with the mid-day exchange, luncheon dates also have become problematic. (The only two things I have been able to participate in were a 5:30 p.m. screening of a film and a mid-afternoon bite to eat at Hof's Hut.)
In short, my social life is now limited to the following:
* watching a Netflix with Aaron and
* seeing my mom on Sunday afternoons
The latter has, up until very recently, been a chore. To everything I say my mother responds, "What?" This is quite annoying, especially since she doesn't do this with anyone else.
Just this past Sunday--two days ago--a shift occurred. As I told Aaron, this was the first time in my entire life that I can ever remember enjoying my mother's company. In contrast to all past encounters, she seemed to be telling me the truth or at least her truth, and her answers to my questions seemed honest and sincere.
We went to a coffeehouse, and she read aloud from her journal about her marriage to my father. She had always said that they met on a bird-watching outing, but she had no recollection of ever having said this. Instead, she said that my father was in the habit of stopping in at the YWCA where she worked on his way to work to get a cup of coffee.
In contrast to the previous Sunday's persistence, which only ended poorly, I let this go and did not press her. This worked so much better. It is really unimportant what is factual and what is not; the most important thing is that she is writing, engaging her mind, and by so doing, giving us something to talk about. Factual is perhaps not as crucial as emotional authenticity. Even if some of what she writes is fabrication or faulty memory, it sure beats dead air.
I am fully aware that one afternoon does not a relationship make. But it is a start. It is still a one-way flow of energy, but that is as it has always been. At least this past Sunday, this one time, she was not saying what she felt others wanted to hear. Perhaps that's it: For the very first time, she was real.
Wednesday, March 18, 2009
Tuesday, March 17, 2009
The Call from UCLA
When I arrived home this noon to do my mid-day exchange, I found a message on my voice mail from Lila Ruiz of UCLA's kidney-transplant team. She told me that she had received the referral from my cardiologist and nephrologist, and said that I would be receiving a letter in three to four months with an appointment date and time.
I was a bit surprised by the time lag. I had been told I would get an appointment with UCLA within a month. Lila said there have been so many referrals lately and that there is quite a backlog. She said I probably wouldn't be seen until late July or early August.
Dr. Butman is on vacation this week, but when he returns, I plan to ask him if I should or can also apply to UC San Diego and Loma Linda Hospital. They are farther away than UCLA, but perhaps my chances are better--or at least I can be seen quicker!
I was a bit surprised by the time lag. I had been told I would get an appointment with UCLA within a month. Lila said there have been so many referrals lately and that there is quite a backlog. She said I probably wouldn't be seen until late July or early August.
Dr. Butman is on vacation this week, but when he returns, I plan to ask him if I should or can also apply to UC San Diego and Loma Linda Hospital. They are farther away than UCLA, but perhaps my chances are better--or at least I can be seen quicker!
How an Atheist Can Pray
I have at least one friend and one relative who tell me they are atheists. They tell me they are sending me good thoughts, though they do not pray. Well, good thoughts are praying!
The standard idea of prayer is that you are begging God or some god/goddess to grant your wishes--give you something good or take something bad away. I would like to propose another kind of prayer, one that everyone, regardless of spiritual beliefs or lack thereof, can practice.
Instead of supplicating a divine being, simply be quiet and envision what you desire. See it in all its beautiful detail. Send love and affirmation to that thought. Feel what it's like to be in that state of love or abundance or health or whatever it is you desire. See the wonder and goodness that flows from that state of being. Feel your body tingling with the sensation of manifesting that state. This sort of loving, life-affirming focusing of attention is what prayer is, whether one is offering the prayer to God the Father or Jesus Christ or Buddha or one of a pantheon of Hindu gods or no god at all.
And this is how I pray for my health: I see my body functioning perfectly, the way it was meant to function, in its full glory of health and vibrancy. I soon begin to feel the tingling in my body, the life force flowing to and through every cell, reminding each cell that it is in alignment with God's plan for me of perfect health and vibrancy.
I do not focus on what I do not want. This only feeds what I do not want to bring about. Instead I focus on what I desire, what I wish to manifest.
And so there is no incompatibility with someone being an atheist and that same person praying. Good thoughts are prayer, and prayer are nothing but good thoughts.
The standard idea of prayer is that you are begging God or some god/goddess to grant your wishes--give you something good or take something bad away. I would like to propose another kind of prayer, one that everyone, regardless of spiritual beliefs or lack thereof, can practice.
Instead of supplicating a divine being, simply be quiet and envision what you desire. See it in all its beautiful detail. Send love and affirmation to that thought. Feel what it's like to be in that state of love or abundance or health or whatever it is you desire. See the wonder and goodness that flows from that state of being. Feel your body tingling with the sensation of manifesting that state. This sort of loving, life-affirming focusing of attention is what prayer is, whether one is offering the prayer to God the Father or Jesus Christ or Buddha or one of a pantheon of Hindu gods or no god at all.
And this is how I pray for my health: I see my body functioning perfectly, the way it was meant to function, in its full glory of health and vibrancy. I soon begin to feel the tingling in my body, the life force flowing to and through every cell, reminding each cell that it is in alignment with God's plan for me of perfect health and vibrancy.
I do not focus on what I do not want. This only feeds what I do not want to bring about. Instead I focus on what I desire, what I wish to manifest.
And so there is no incompatibility with someone being an atheist and that same person praying. Good thoughts are prayer, and prayer are nothing but good thoughts.
Monday, March 16, 2009
Other Lives
Not often do I think of the images I have received of other lifetimes. After all, this life right here and now is the important one. It's the one that needs my attention.
Once in a while, though, I do give these images some reflection. Now before you start saying, "UGH, not another Cleopatra or Napoleon," I assure you that I remember no lives that were chronicled, much less deified. No, the lives I remember were outwardly simple, though I sensed an interior depth. This profound interiority is the primary reason why I so resonated with these others.
And who were they?
* A shepherd, seemingly in the Middle East. Perhaps Israeli. Dressed in tunic and sandals. Could have been 1,000 or 2,000 years ago.
* A Chinese apothecary, beloved by the local children, who giggled about him and tugged playfully at his long robes. He in turn smiled at them, considering them his children, though he didn't appear to have any of his own. No wife either. A gentleness about him, the compassion of a true healer. People would come to him with their problems because they knew he was discreet and that their secrets were safe with him. He would listen, then prepare a tincture to calm their nerves or lift their spirits or abort a sobbing child's unwanted child.
* A slender, nicely attired woman, circa 1930s. Brunette. Lived alone in a sunny, second-story apartment that was cheerful and tidy. Lots of plants. A comfy sofa upon which she leisurely sipped tea and read books, lots of books. Walked to work. Some kind of an office job, though more responsibility than was generally granted women in those days. Greeted by the shopkeepers and pedestrians she passed. Self-contained. Friendly, polite, but not close to anyone. Seemed quite calm, content with her life. Not at all lonely.
* A Catholic monk during the Middle Ages or perhaps later, but in a monastery that had not kept up with the times. This was by far the most powerful vision. I actually felt what he was feeling in my own body. I felt as if I were inside his body. I was there, kneeling on the cold, stone floor of an empty church, and felt I was descending into the earth, as if I had entered a trance that the monk had achieved through long hours of focused prayer. Through this experience, I received a valuable insight, which I crafted into the following poem:
Stepping Outside the City Walls
Five decades hauling water
to wash Christ's feet
and cook the abbott's supper.
Fifty years chopping wood
from forests beyond the city walls.
Pine and juniper, hazelnut, maple, and oak.
Trees felled by those who move in the world.
By day, the villagers left branches at our gate.
Sweet pumpkin bread,
apples, and candles, too.
Wildflowers and thick, coarse blankets
for men who sleep alone.
When only angels and devils stirred,
I brought the gifts inside.
A street filled with people would make me blush,
but darkened, it had no power over me.
Hours alone beneath the cross.
Bruised knees on a cold chapel floor.
Sarifices for the One who led me underground
to secret places where other lives were lived.
Thirty four years ago,
I awoke inside a girl's body.
Within her dreamy, preschool mind,
I was a thought:
How wonderful to be a monk,
a curator of God's soul!
She built altars of dandelions
and pillows of grass clippings for the Virgin's tender feet.
From the tulips to the weeping willow,
the Queen of Heaven floated on blue light beams,
winged garter snakes, and broken colored glass.
White leather prayer books and visions in the woods
kept the little girl content.
But as she grew, she soon discovered that monks were always men
and nuns were made for serving priests.
The convent doors closed,
she chose sickness instead, the secular path of withdrawal.
Insulin syringes and admonitions of "no candy"
formed walls against a world unannounced and uninvited,
a bothersome neighbor forever knocking at her door.
The little girl now seldom thinks of Mary's feet.
She's more concerned with wrinkles beneath her eyes
and her son's face in which she already sees a man.
At nights she prays to anything that may be listening:
"Spirit, God, Angel, Guide,
heal my body so that I might better reveal
my excellence to the world."
I'm yet a thought within her mind,
but growing smaller now.
Soon I'll be a relic of a thought
from some other life sleeping deeper and deeper underground.
Once in a while, though, I do give these images some reflection. Now before you start saying, "UGH, not another Cleopatra or Napoleon," I assure you that I remember no lives that were chronicled, much less deified. No, the lives I remember were outwardly simple, though I sensed an interior depth. This profound interiority is the primary reason why I so resonated with these others.
And who were they?
* A shepherd, seemingly in the Middle East. Perhaps Israeli. Dressed in tunic and sandals. Could have been 1,000 or 2,000 years ago.
* A Chinese apothecary, beloved by the local children, who giggled about him and tugged playfully at his long robes. He in turn smiled at them, considering them his children, though he didn't appear to have any of his own. No wife either. A gentleness about him, the compassion of a true healer. People would come to him with their problems because they knew he was discreet and that their secrets were safe with him. He would listen, then prepare a tincture to calm their nerves or lift their spirits or abort a sobbing child's unwanted child.
* A slender, nicely attired woman, circa 1930s. Brunette. Lived alone in a sunny, second-story apartment that was cheerful and tidy. Lots of plants. A comfy sofa upon which she leisurely sipped tea and read books, lots of books. Walked to work. Some kind of an office job, though more responsibility than was generally granted women in those days. Greeted by the shopkeepers and pedestrians she passed. Self-contained. Friendly, polite, but not close to anyone. Seemed quite calm, content with her life. Not at all lonely.
* A Catholic monk during the Middle Ages or perhaps later, but in a monastery that had not kept up with the times. This was by far the most powerful vision. I actually felt what he was feeling in my own body. I felt as if I were inside his body. I was there, kneeling on the cold, stone floor of an empty church, and felt I was descending into the earth, as if I had entered a trance that the monk had achieved through long hours of focused prayer. Through this experience, I received a valuable insight, which I crafted into the following poem:
Stepping Outside the City Walls
Five decades hauling water
to wash Christ's feet
and cook the abbott's supper.
Fifty years chopping wood
from forests beyond the city walls.
Pine and juniper, hazelnut, maple, and oak.
Trees felled by those who move in the world.
By day, the villagers left branches at our gate.
Sweet pumpkin bread,
apples, and candles, too.
Wildflowers and thick, coarse blankets
for men who sleep alone.
When only angels and devils stirred,
I brought the gifts inside.
A street filled with people would make me blush,
but darkened, it had no power over me.
Hours alone beneath the cross.
Bruised knees on a cold chapel floor.
Sarifices for the One who led me underground
to secret places where other lives were lived.
Thirty four years ago,
I awoke inside a girl's body.
Within her dreamy, preschool mind,
I was a thought:
How wonderful to be a monk,
a curator of God's soul!
She built altars of dandelions
and pillows of grass clippings for the Virgin's tender feet.
From the tulips to the weeping willow,
the Queen of Heaven floated on blue light beams,
winged garter snakes, and broken colored glass.
White leather prayer books and visions in the woods
kept the little girl content.
But as she grew, she soon discovered that monks were always men
and nuns were made for serving priests.
The convent doors closed,
she chose sickness instead, the secular path of withdrawal.
Insulin syringes and admonitions of "no candy"
formed walls against a world unannounced and uninvited,
a bothersome neighbor forever knocking at her door.
The little girl now seldom thinks of Mary's feet.
She's more concerned with wrinkles beneath her eyes
and her son's face in which she already sees a man.
At nights she prays to anything that may be listening:
"Spirit, God, Angel, Guide,
heal my body so that I might better reveal
my excellence to the world."
I'm yet a thought within her mind,
but growing smaller now.
Soon I'll be a relic of a thought
from some other life sleeping deeper and deeper underground.
The Final Decision
Two months ago, I was still wondering whether I should proceed with dialysis. I really didn't know if I wanted to go through with it. For about a year, whenever a doctor would bring up the subject, I'd say that life is hard enough as it is without a partner, but I sure didn't want to face dialysis alone. The doctor would then press me, asking me what I planned to do. "I am expecting a miracle," I'd reply. "And if that doesn't happen, I'll just die."
Around this time, I had a heart-to-heart with Aaron and told him I really didn't want to do this, that perhaps I'd be better off dead. I saluted and said, "Ready for re-assignment, Sir!"
But then I realized that my re-assignment would be a return to the same assignment. I've lived with chronic illness all my life and damn if I'm going to leave this life and be plopped down in another life of illness! No way! This message came through with such certainty, like a lightening bolt from heaven.
I continue to see myself as healthy and vibrant and strong. I sure as hell would love to manifest this during this lifetime, but I will not be denied in the next because I wouldn't see things through to the end this time around.
I can come up with hundreds of reasons to go on living--everything from sunshine and birdsong to my son, creative ventures, and the hope-springs-eternal possibility of romance. Hundreds of reasons to continue with dialysis. But even if all of these were to vanish, I have my ace in the hole: the card that says, "You can't fold yet."
Around this time, I had a heart-to-heart with Aaron and told him I really didn't want to do this, that perhaps I'd be better off dead. I saluted and said, "Ready for re-assignment, Sir!"
But then I realized that my re-assignment would be a return to the same assignment. I've lived with chronic illness all my life and damn if I'm going to leave this life and be plopped down in another life of illness! No way! This message came through with such certainty, like a lightening bolt from heaven.
I continue to see myself as healthy and vibrant and strong. I sure as hell would love to manifest this during this lifetime, but I will not be denied in the next because I wouldn't see things through to the end this time around.
I can come up with hundreds of reasons to go on living--everything from sunshine and birdsong to my son, creative ventures, and the hope-springs-eternal possibility of romance. Hundreds of reasons to continue with dialysis. But even if all of these were to vanish, I have my ace in the hole: the card that says, "You can't fold yet."
Thank You, Cousins!
A big thank you to all my cousins in Minnesota who have been sending me loving, supportive e-mails. This means an awful lot to me.
Because I lived in Wisconsin as a child, I didn't get to see my cousins as much as I might have liked to, but the times we did spend together stick out in my mind, especially the annual summer picnic in Ormsby.
As our mothers and fathers grew older and died, our generation didn't continue with the family picnics. Instead, the November foeden party became the new get-together.
I attended my first foeden party this past November and had such a fantastic time. I so enjoyed all my cousins! I made a promise to myself that I would do everything I could to attend every year from here on in.
Right now, travel of any kind seems daunting, but I sure hope to see you all in November. I look forward to receiving in person all the hugs you're e-mailing me now!
Because I lived in Wisconsin as a child, I didn't get to see my cousins as much as I might have liked to, but the times we did spend together stick out in my mind, especially the annual summer picnic in Ormsby.
As our mothers and fathers grew older and died, our generation didn't continue with the family picnics. Instead, the November foeden party became the new get-together.
I attended my first foeden party this past November and had such a fantastic time. I so enjoyed all my cousins! I made a promise to myself that I would do everything I could to attend every year from here on in.
Right now, travel of any kind seems daunting, but I sure hope to see you all in November. I look forward to receiving in person all the hugs you're e-mailing me now!
Same Weight I Was in High School
A few days ago, I told Dr. Butman that I'm the same weight I was in high school. I was 126 then, and without the two liters (four pounds) I carry inside my peritoneum membrane between exchanges, I would be 126. Right now, with those two liters, I generally weigh in at 131 or 132.
I've probably been carrying around extra fluid for years because, before I went on dialysis, my weight fluctuated from 138 to 155. Extra fluid, of course, put a strain on my heart.
Dr. Butman responded by saying how his patients so often tell him that putting on weight is associated with aging. "But they haven't grown any taller since high school, have they?" he retorted.
Just as with so many things, weight gain is something people don't want to take personal responsibility for; they'd rather make excuses. All I know is that if I, who has exercised so little in the past several years because to do so gave me chest pain and shortness of breath, if I can be the same weight I was in high school, then certainly people who are able to exercise without chest pain can do the same.
I've probably been carrying around extra fluid for years because, before I went on dialysis, my weight fluctuated from 138 to 155. Extra fluid, of course, put a strain on my heart.
Dr. Butman responded by saying how his patients so often tell him that putting on weight is associated with aging. "But they haven't grown any taller since high school, have they?" he retorted.
Just as with so many things, weight gain is something people don't want to take personal responsibility for; they'd rather make excuses. All I know is that if I, who has exercised so little in the past several years because to do so gave me chest pain and shortness of breath, if I can be the same weight I was in high school, then certainly people who are able to exercise without chest pain can do the same.
Crazy Weight Swings
Yesterday I gained more than seven pounds from the time I got up to the time I went to bed. All I can attribute this to is eating two chicken sausages. Too much salt, resulting in water retention and fluid overload.
Last night I hooked up with one green bag and one red. Green is for when things are stable, and red is for fluid overload. (Yellow is for a dehydrated state.) Generally, I use one green and one yellow, and that keeps me fairly stable. Red is pretty powerful and draws out a lot of fluid and a lot of toxins. This morning I woke up seven pounds lighter.
I'm sure there are those who are reading this and thinking how wonderful it would be to drop seven pounds while you slept. Sounds like something you'd see on an infomercial. Well, let me tell you, it's definitely not the way to go.
First off, it stretches my skin. My belly becomes distended when I'm in fluid overload, and then when it's relieved, the skin is lax. And secondly, that stretching causes my whole body to ache. I just feel tired, worn out, almost beat up after such a swing.
No, folks, the best way to lose weight is to eat right and exercise. Not like this.
**************
Last night, March 16-17, I lost 11.4 pounds. I went to bed at 142.6 and woke up at 131.2. Really don't like how I feel after such a wild swing.
Last night I hooked up with one green bag and one red. Green is for when things are stable, and red is for fluid overload. (Yellow is for a dehydrated state.) Generally, I use one green and one yellow, and that keeps me fairly stable. Red is pretty powerful and draws out a lot of fluid and a lot of toxins. This morning I woke up seven pounds lighter.
I'm sure there are those who are reading this and thinking how wonderful it would be to drop seven pounds while you slept. Sounds like something you'd see on an infomercial. Well, let me tell you, it's definitely not the way to go.
First off, it stretches my skin. My belly becomes distended when I'm in fluid overload, and then when it's relieved, the skin is lax. And secondly, that stretching causes my whole body to ache. I just feel tired, worn out, almost beat up after such a swing.
No, folks, the best way to lose weight is to eat right and exercise. Not like this.
**************
Last night, March 16-17, I lost 11.4 pounds. I went to bed at 142.6 and woke up at 131.2. Really don't like how I feel after such a wild swing.
Saturday, March 14, 2009
The Desert Personality
"People disappoint, nature never does," a strange and beautiful person once told me. This comment prompted me to write a poem, which follows this entry. Over the years I have often taken an overheard phrase and crafted a whole life around it in a poem, as is the case here.
Though in darker times I have focused on the first part of that sentence, I have been much more acutely aware of the latter half as of late. Each morning when I leave my apartment, I am struck by the beauty of even the most subtle of nature's displays. The sunshine, the flowers in the courtyard, the dew, birdsong. And I think back on my entire life and realize that never once has nature disappointed me. Even the seemingly post-Armageddon desert around Palm Springs has its hidden charm. Yes, every time nature has delighted, if not knocked me over with wonder.
"Why is this?" I thought to myself. I've come up with a few answers:
* I don't expect anything from nature. And because there are no expectations, it never disappoints.
* Nature carries with it such a divine, peaceful feeling of being-ness, whereas human action is so concerned with doing and achieving. The frenetic energy of the latter and the ensuing emotional drama created by all this fussing necessarily result in disappointment for all concerned.
I do realize that some people are disappointed with nature. I met one at Yellowstone National Park in the summer of 2006. Aaron and I were viewing Mammoth Hot Springs when a German tourist voiced his dismay. The colors were not as vibrant as he had expected them to be, the water was not as bubbly as he had wished. Aaron and I both thought this was funny: complaints about grandeur. A definite sign of a "desert personality."
Here now is the poem, written so long ago:
The Desert Personality
“All I want from life is solitude,”
he told me one morning after sex.
“Perhaps I’m invisible,” I thought,
“A non-entity with a mind,
something I strongly suspected as a child.”
There was no bedroom mirror
with which to test my hypothesis.
I realized he wasn’t intentionally hurting me,
since I wasn’t really there after all.
And if I were, perhaps I was an accomplice in his solitude,
someone to share his vision of silence in the dunes.
As it were, all I had were his words
of the disappointment humans had brought him
and the peace only a hermit can know.
He’d made it clear often enough
that he didn’t need me or anyone else.
For years, I pretended the same,
telling myself he was just so much fun,
easy to love, easier to leave.
“Don’t expect anything and you won’t be disappointed,”
he often advised.
Years later, he said he hadn’t meant this to apply to him,
though he was the case with so few exceptions.
A few times he told me about the woman he had loved,
how often he thought of her body,
how much he missed her breasts in his hands.
He’d lived with her for seven years,
something he wouldn’t consider doing now,
since he wanted to be alone,
with his rabbit,
his dog,
his parrot.
We’d spent maybe a month together,
if all the hours were laid end to end.
It’s only right he should want her, I lied to myself,
though a decade had passed
since he had held her breasts in his hands.
I wonder if he’d told her, too,
that all he wanted from life was solitude.
Though in darker times I have focused on the first part of that sentence, I have been much more acutely aware of the latter half as of late. Each morning when I leave my apartment, I am struck by the beauty of even the most subtle of nature's displays. The sunshine, the flowers in the courtyard, the dew, birdsong. And I think back on my entire life and realize that never once has nature disappointed me. Even the seemingly post-Armageddon desert around Palm Springs has its hidden charm. Yes, every time nature has delighted, if not knocked me over with wonder.
"Why is this?" I thought to myself. I've come up with a few answers:
* I don't expect anything from nature. And because there are no expectations, it never disappoints.
* Nature carries with it such a divine, peaceful feeling of being-ness, whereas human action is so concerned with doing and achieving. The frenetic energy of the latter and the ensuing emotional drama created by all this fussing necessarily result in disappointment for all concerned.
I do realize that some people are disappointed with nature. I met one at Yellowstone National Park in the summer of 2006. Aaron and I were viewing Mammoth Hot Springs when a German tourist voiced his dismay. The colors were not as vibrant as he had expected them to be, the water was not as bubbly as he had wished. Aaron and I both thought this was funny: complaints about grandeur. A definite sign of a "desert personality."
Here now is the poem, written so long ago:
The Desert Personality
“All I want from life is solitude,”
he told me one morning after sex.
“Perhaps I’m invisible,” I thought,
“A non-entity with a mind,
something I strongly suspected as a child.”
There was no bedroom mirror
with which to test my hypothesis.
I realized he wasn’t intentionally hurting me,
since I wasn’t really there after all.
And if I were, perhaps I was an accomplice in his solitude,
someone to share his vision of silence in the dunes.
As it were, all I had were his words
of the disappointment humans had brought him
and the peace only a hermit can know.
He’d made it clear often enough
that he didn’t need me or anyone else.
For years, I pretended the same,
telling myself he was just so much fun,
easy to love, easier to leave.
“Don’t expect anything and you won’t be disappointed,”
he often advised.
Years later, he said he hadn’t meant this to apply to him,
though he was the case with so few exceptions.
A few times he told me about the woman he had loved,
how often he thought of her body,
how much he missed her breasts in his hands.
He’d lived with her for seven years,
something he wouldn’t consider doing now,
since he wanted to be alone,
with his rabbit,
his dog,
his parrot.
We’d spent maybe a month together,
if all the hours were laid end to end.
It’s only right he should want her, I lied to myself,
though a decade had passed
since he had held her breasts in his hands.
I wonder if he’d told her, too,
that all he wanted from life was solitude.
Friday, March 13, 2009
Don't Argue, Don't Reason, Don't Explain
My mother is fast descending into a twilight zone. She is having trouble concentrating and remembering things from moment to moment. Each time I see her, she seems to have gone deeper into the dimness.
One bright spot--really the only bright spot I have seen since she moved to California in January of 2008--is that she's writing in a journal. I bought her a blank journal for Christmas because she was writing bits of her past in the notebook in which she keeps track of doctor visits, upcoming events, and how to do simple tasks like bathing or turning on the heat. I said that she should devote a special place to her writing. Of all the many things I have encouraged her to do, writing seems is the only one she has taken to heart. And encourage it I do. I tell her that this is a great way to keep her mind involved.
Now when we get together, she asks if I'd like to hear her read from her journal. This helps tremendously, since her conversational skills have really deteriorated. Once I have asked her how she is and what she did during the week, she falls silent. This way, with her journal, she reads aloud to me and I ask her questions about what she's written, ask her to fill in details, and she makes notes in the journal that she says she'll flesh out later.
Last Sunday we sat in a coffeehouse while she ate a slice of cheesecake and read aloud of threshing cooperatives and her high school days. She wrote that she and her friend drove her brother Max's car to the last six weeks of high school, as he was serving overseas.
This didn't add up. My mom was born in 1921, which would mean that she graduated from high school in 1939. And she collaborated that, saying that she began her college classes at Gustavus Adolphus in the fall of 1939. So I asked if Max had joined the service prior to Pearl Harbor. She said, no, that he had served in 1944. I wondered how he could have given her his car to use if he hadn't gone overseas for another five years. She didn't understand.
I drew a timeline with her birth, her high school years, Pearl Harbor, and Max's service. She still didn't understand that high school and Max's absence weren't concurrent.
I said that this would be like me saying that Aaron had given me a beautiful Mother's Day gift while I was in high school, but Aaron hadn't been born yet. She didn't understand, but she knew she wasn't understanding something that she should have understood. When I realized this, it was too late. She was already near tears.
I felt so badly for her in that moment. She must be aware that she's slipping, but doesn't know what to do.
I need to remember what the UCI Medical Center psychologist told me about dementia: A-R-E. Don't argue, don't reason, don't explain.
From here on in, I will simply listen to her read, maybe ask a few questions. But if she has trouble answering them, I need simply say, "Please, Mom, read more."
One bright spot--really the only bright spot I have seen since she moved to California in January of 2008--is that she's writing in a journal. I bought her a blank journal for Christmas because she was writing bits of her past in the notebook in which she keeps track of doctor visits, upcoming events, and how to do simple tasks like bathing or turning on the heat. I said that she should devote a special place to her writing. Of all the many things I have encouraged her to do, writing seems is the only one she has taken to heart. And encourage it I do. I tell her that this is a great way to keep her mind involved.
Now when we get together, she asks if I'd like to hear her read from her journal. This helps tremendously, since her conversational skills have really deteriorated. Once I have asked her how she is and what she did during the week, she falls silent. This way, with her journal, she reads aloud to me and I ask her questions about what she's written, ask her to fill in details, and she makes notes in the journal that she says she'll flesh out later.
Last Sunday we sat in a coffeehouse while she ate a slice of cheesecake and read aloud of threshing cooperatives and her high school days. She wrote that she and her friend drove her brother Max's car to the last six weeks of high school, as he was serving overseas.
This didn't add up. My mom was born in 1921, which would mean that she graduated from high school in 1939. And she collaborated that, saying that she began her college classes at Gustavus Adolphus in the fall of 1939. So I asked if Max had joined the service prior to Pearl Harbor. She said, no, that he had served in 1944. I wondered how he could have given her his car to use if he hadn't gone overseas for another five years. She didn't understand.
I drew a timeline with her birth, her high school years, Pearl Harbor, and Max's service. She still didn't understand that high school and Max's absence weren't concurrent.
I said that this would be like me saying that Aaron had given me a beautiful Mother's Day gift while I was in high school, but Aaron hadn't been born yet. She didn't understand, but she knew she wasn't understanding something that she should have understood. When I realized this, it was too late. She was already near tears.
I felt so badly for her in that moment. She must be aware that she's slipping, but doesn't know what to do.
I need to remember what the UCI Medical Center psychologist told me about dementia: A-R-E. Don't argue, don't reason, don't explain.
From here on in, I will simply listen to her read, maybe ask a few questions. But if she has trouble answering them, I need simply say, "Please, Mom, read more."
Rogue Waves
Gerard d'Aboville, who rowed across the Pacific in 1990, writes of brushes with death that blindsided him in his account of his journey, "Alone." Times when the weather was good and the ocean was calm, and then a wave comes out of nowhere, and he nearly loses his life.
I, too, have had some rogue-wave experiences lately, most recently Wednesday night.
I had been going along, feeling fine, blood sugar and blood pressure under control. Then a rouge wave struck. I tested my blood sugar, and it was 599. Normal is 70-120. I haven't seen a number like this in I don't know how long. I gave myself a bolus of insulin, then tested again in an hour. By then it was off the scale, somewhere above 600. More insulin, then more and more and more. Still 600. Finally, at 4 a.m., my blood tested at 199. High, but acceptable. In total, I had taken 52 units of insulin to bring my blood sugar down, more insulin than I usually take in two days. During the night, I had experienced chest pain and pressure, due to the high blood glucose, and severe leg cramps and nausea. All day yesterday I felt like I had been beaten up, hit by a rogue wave.
Today the seas are once again calm, and so I am at ease--until the next brush with death.
I, too, have had some rogue-wave experiences lately, most recently Wednesday night.
I had been going along, feeling fine, blood sugar and blood pressure under control. Then a rouge wave struck. I tested my blood sugar, and it was 599. Normal is 70-120. I haven't seen a number like this in I don't know how long. I gave myself a bolus of insulin, then tested again in an hour. By then it was off the scale, somewhere above 600. More insulin, then more and more and more. Still 600. Finally, at 4 a.m., my blood tested at 199. High, but acceptable. In total, I had taken 52 units of insulin to bring my blood sugar down, more insulin than I usually take in two days. During the night, I had experienced chest pain and pressure, due to the high blood glucose, and severe leg cramps and nausea. All day yesterday I felt like I had been beaten up, hit by a rogue wave.
Today the seas are once again calm, and so I am at ease--until the next brush with death.
A Thousand Little Abandonments
Recently I read "Alone," the tale of Gerard d'Aboville, the Frenchman who at 46 years old rowed across the Pacific Ocean from Choshi, Japan, to the mouth of the Columbia River. Hard to believe, but he did it.
Throughout the book I was impressed in the many ways in which his struggle parallels mine, even though the venues are quite dissimilar.
Here is an insightful passage from his book:
"My motor is not so much my muscles, but my stubbornness, my tenacity, my loathing of discouragement, which I have to fight day after day, hour after hour, stoke after stroke, as each arc of the oars grows more difficult than the last. I am a resistance fighter in a war I invented for myself. The enemy is me, with all my physical shortcomings, my temptation to give up. That temptation, by the way, does not consist of sending up my distress signal and throwing in the towel, as one might think. It is the thousand and one little daily temptations that lie in wait for us all: to get out of bed five minutes later than usual, to stop one minute before the bell rings signaling the end of the working day; to pull a trifle less vigorously on the oar next time; even to stop shaving. These are the kinds of minor abandonments, the castings off just a little here and there, which together, ineluctably lead to the ultimate surrender. And it is these same minor, ridiculous battles, these repetitive, fastidious, inglorious battles that, if I persist, will eventually lead me to victory."
Every time I go into the PD clinic and see other dialysis patients, I come away with the message: Don't succumb to minor abandonments. The temptation to ignore healthful eating habits and just eat whatever I damn well please. The temptation to stop caring about my looks, to shun the little bit of makeup I do wear, to start donning sweat pants. My friend Heather recently quoted a comedian who said that nothing signals giving up like sweatpants. And yet sweatpants is what all the PD clinic staff recommend to hide the four-pound pouch caused by the dialysis solution that is left in the peritoneum membrane between exchanges.
All I am exposed to are dialysis patients who, in so many little abandonments, have given up. They may not see it that way, but it's clear to me. I think of the insulin-dependent diabetic who has received two kidney transplants and continues to get toes amputated yet eats Kentucky Fried Chicken, pepperoni pizza, and sheet cake with gobs of frosting. Or the woman who must weigh 350 pounds and so is confined to a wheelchair. Actually, all of the dialysis patients who attended the two support group meetings I have attended have been overweight or obese. And my friend Bob, whose father is on hemodialysis but is actually extremely thin, reports the same: patients bringing cheesecake and candy and buckets of fried chicken into the dialysis center.
I am not tempted by food, and I have enough self-worth to want to look my best, so I don't see this being the route I follow. But I must be on guard against any thought, word, or action that undermines my ability to be in absolutely top form.
By eating an organic, healthful diet; by wearing a gray wool suit or a coordinated skirt and blouse; and by projecting an upbeat look rather than the dejected, worn-out, beaten-up looks I see so often in other dialysis patients, I show to the world that I am the person who is a fantastic candidate for a kidney transplant. And if, like Gerard, I persist, I will eventually have my victory.
Throughout the book I was impressed in the many ways in which his struggle parallels mine, even though the venues are quite dissimilar.
Here is an insightful passage from his book:
"My motor is not so much my muscles, but my stubbornness, my tenacity, my loathing of discouragement, which I have to fight day after day, hour after hour, stoke after stroke, as each arc of the oars grows more difficult than the last. I am a resistance fighter in a war I invented for myself. The enemy is me, with all my physical shortcomings, my temptation to give up. That temptation, by the way, does not consist of sending up my distress signal and throwing in the towel, as one might think. It is the thousand and one little daily temptations that lie in wait for us all: to get out of bed five minutes later than usual, to stop one minute before the bell rings signaling the end of the working day; to pull a trifle less vigorously on the oar next time; even to stop shaving. These are the kinds of minor abandonments, the castings off just a little here and there, which together, ineluctably lead to the ultimate surrender. And it is these same minor, ridiculous battles, these repetitive, fastidious, inglorious battles that, if I persist, will eventually lead me to victory."
Every time I go into the PD clinic and see other dialysis patients, I come away with the message: Don't succumb to minor abandonments. The temptation to ignore healthful eating habits and just eat whatever I damn well please. The temptation to stop caring about my looks, to shun the little bit of makeup I do wear, to start donning sweat pants. My friend Heather recently quoted a comedian who said that nothing signals giving up like sweatpants. And yet sweatpants is what all the PD clinic staff recommend to hide the four-pound pouch caused by the dialysis solution that is left in the peritoneum membrane between exchanges.
All I am exposed to are dialysis patients who, in so many little abandonments, have given up. They may not see it that way, but it's clear to me. I think of the insulin-dependent diabetic who has received two kidney transplants and continues to get toes amputated yet eats Kentucky Fried Chicken, pepperoni pizza, and sheet cake with gobs of frosting. Or the woman who must weigh 350 pounds and so is confined to a wheelchair. Actually, all of the dialysis patients who attended the two support group meetings I have attended have been overweight or obese. And my friend Bob, whose father is on hemodialysis but is actually extremely thin, reports the same: patients bringing cheesecake and candy and buckets of fried chicken into the dialysis center.
I am not tempted by food, and I have enough self-worth to want to look my best, so I don't see this being the route I follow. But I must be on guard against any thought, word, or action that undermines my ability to be in absolutely top form.
By eating an organic, healthful diet; by wearing a gray wool suit or a coordinated skirt and blouse; and by projecting an upbeat look rather than the dejected, worn-out, beaten-up looks I see so often in other dialysis patients, I show to the world that I am the person who is a fantastic candidate for a kidney transplant. And if, like Gerard, I persist, I will eventually have my victory.
Thursday, March 12, 2009
A Prayer of Thanks for All the Prayers
If I had a dollar for everyone who has told me that he or she is praying for me, well, I'd have enough to buy a new kidney!
And it's such a range of belief systems--from fundamentalist Christian to stalwart Minnesota Lutheran to New Age, Church of Religious Science, and Taoism--that I feel I have all the bases covered. Even a few agnostics are giving prayer a whirl just for me. This last group really impresses me; they're like vegans who start eating meat to support their friend's struggling cattle industry. A classic case of an Aristotelean hierarchy of goods.
For all these prayers from beginners and old pros, I am very thankful. I know that concentrating attention on a desired aim in a loving, positive, life-affirming manner is extremely powerful. The power that can shift the thinking of those who are deciding my fate. So thanks to every last one of you for your prayers. Please keep them coming!
And it's such a range of belief systems--from fundamentalist Christian to stalwart Minnesota Lutheran to New Age, Church of Religious Science, and Taoism--that I feel I have all the bases covered. Even a few agnostics are giving prayer a whirl just for me. This last group really impresses me; they're like vegans who start eating meat to support their friend's struggling cattle industry. A classic case of an Aristotelean hierarchy of goods.
For all these prayers from beginners and old pros, I am very thankful. I know that concentrating attention on a desired aim in a loving, positive, life-affirming manner is extremely powerful. The power that can shift the thinking of those who are deciding my fate. So thanks to every last one of you for your prayers. Please keep them coming!
Wednesday, March 11, 2009
E-mail of Resignation
Well, I finally did it: This evening I e-mailed my department chair and told him I would be retiring at the end of this semester. I have thought about leaving, but now I have put those thoughts into action.
I have been teaching at Cal State since August of 1987. Not every semester, but every semester for the last decade. With end-stage kidney disease and congestive heart failure, I can take a disability retirement. That works out to almost exactly the same amount of money that I take home when I teach two classes per semester. In other words, not much. Enough to pay the rent, buy groceries, and get a cup of coffee now and then. But not enough for gas, truck repairs, Internet service, the phone bill, and Netflix. So I'll have to do something to make ends meet.
But more importantly, I have a sense of urgency. It's now or never. If I ever want to finish writing the books I've started about Shizeng and Mike, I better get to it. It isn't often that the universe drops such true-life events in someone's lap. A qi gong master from Beijing who could heal the sick but who sucked their souls in the process. A tale of sleeping with the devil. And with Mike, it's the Greek tragedy of a soul surfer with dissociative personality disorder. Internal hell amidst exquisite coastal beauty.
Of course, I also have a collection of short stories and several children's books I've already written that I want to see published. And I've written several chapters in each of two nonfiction works. Upon retiring I would finally be able to devote large chunks of time to all of these projects. That is, between doctor appointments!
I have been teaching at Cal State since August of 1987. Not every semester, but every semester for the last decade. With end-stage kidney disease and congestive heart failure, I can take a disability retirement. That works out to almost exactly the same amount of money that I take home when I teach two classes per semester. In other words, not much. Enough to pay the rent, buy groceries, and get a cup of coffee now and then. But not enough for gas, truck repairs, Internet service, the phone bill, and Netflix. So I'll have to do something to make ends meet.
But more importantly, I have a sense of urgency. It's now or never. If I ever want to finish writing the books I've started about Shizeng and Mike, I better get to it. It isn't often that the universe drops such true-life events in someone's lap. A qi gong master from Beijing who could heal the sick but who sucked their souls in the process. A tale of sleeping with the devil. And with Mike, it's the Greek tragedy of a soul surfer with dissociative personality disorder. Internal hell amidst exquisite coastal beauty.
Of course, I also have a collection of short stories and several children's books I've already written that I want to see published. And I've written several chapters in each of two nonfiction works. Upon retiring I would finally be able to devote large chunks of time to all of these projects. That is, between doctor appointments!
Tuesday, March 10, 2009
Looking at the Stats
As Dr. Butman reminded me Monday afternoon, patients on the transplant list live longer than those who are not placed on the list. Well, of course. They have something to live for, some hope of getting off dialysis and leading a somewhat-normal life.
And it's probably true, if anyone took the time to do a study, that dialysis patients with a lifelong and/or romantic partner live longer than those without. And that dialysis patients who are financially secure live longer than those who are struggling to make ends meet. And that dialysis patients who do not have to care for a parent with dementia live longer than those who do.
So what can I do to soften these drags on my health? Here are a few things:
* Every night as I have done for years, I lie in bed before I go to sleep and say aloud, "Heidi, I love you. I love you so much." Sometimes I elaborate about the things I appreciate about myself, things I am sure a life partner would appreciate. This helps a great deal. Sometimes it's almost as if the man who is matched to me in all the world--wherever the hell he is!--is channeling himself through my body and using my vocal chords to say what he'd like to tell me. I'm sure many people who have been married for decades don't have that level of connection!
* About 10 years ago, I had a community-garden plot. I learned so much about vegetables, and I received such a sense of satisfaction from growing my own food. Now that I have more energy and soon will have more time, I signed up to be on the waiting list for the Wild Oats community garden a few blocks from my apartment. I know that working around growing things will boost my spirits. And the people who populate community gardens are often funky and fun.
* I have decided to leave Cal State and have made the news official by alerting my department chair. I have to fill out a lot of paperwork to make this happen, but I have put the ball in motion. This is a positive step in leaving a situation that has not served me well for a very long time.
* I am attempting to keep as connected with friends as much as possible with my limited availability.
* I am making a point of writing every day, something I will continue to do once I leave Cal State.
* I need to find a venue for showmanship. In my 20s and early 30s, I met this need through poetry readings. At Cal State, I often saw the classroom as a performance space. If I put my attention into The Wedding Poet, I'm sure I'll get wedding, anniversary, retirement, and other gigs. In fact, I landed my first paying gig--a June wedding for Jen and Brad of Anchorage.
* And last but not least, I will skew the odds, beat the statistics, by the sheer force of my will. Amen!
And it's probably true, if anyone took the time to do a study, that dialysis patients with a lifelong and/or romantic partner live longer than those without. And that dialysis patients who are financially secure live longer than those who are struggling to make ends meet. And that dialysis patients who do not have to care for a parent with dementia live longer than those who do.
So what can I do to soften these drags on my health? Here are a few things:
* Every night as I have done for years, I lie in bed before I go to sleep and say aloud, "Heidi, I love you. I love you so much." Sometimes I elaborate about the things I appreciate about myself, things I am sure a life partner would appreciate. This helps a great deal. Sometimes it's almost as if the man who is matched to me in all the world--wherever the hell he is!--is channeling himself through my body and using my vocal chords to say what he'd like to tell me. I'm sure many people who have been married for decades don't have that level of connection!
* About 10 years ago, I had a community-garden plot. I learned so much about vegetables, and I received such a sense of satisfaction from growing my own food. Now that I have more energy and soon will have more time, I signed up to be on the waiting list for the Wild Oats community garden a few blocks from my apartment. I know that working around growing things will boost my spirits. And the people who populate community gardens are often funky and fun.
* I have decided to leave Cal State and have made the news official by alerting my department chair. I have to fill out a lot of paperwork to make this happen, but I have put the ball in motion. This is a positive step in leaving a situation that has not served me well for a very long time.
* I am attempting to keep as connected with friends as much as possible with my limited availability.
* I am making a point of writing every day, something I will continue to do once I leave Cal State.
* I need to find a venue for showmanship. In my 20s and early 30s, I met this need through poetry readings. At Cal State, I often saw the classroom as a performance space. If I put my attention into The Wedding Poet, I'm sure I'll get wedding, anniversary, retirement, and other gigs. In fact, I landed my first paying gig--a June wedding for Jen and Brad of Anchorage.
* And last but not least, I will skew the odds, beat the statistics, by the sheer force of my will. Amen!
Monday, March 09, 2009
I'd Already Known
When I spoke with Dr. Butman this afternoon, I told him I was going to have a good cry. But I didn't. I had already received the message about the review board's rejection a full day before. Yesterday afternoon, the message had come through so strong, and it's then that I had cried. No, wept, sobbed. Crying again tonight would have been excessive, anticlimactic, and redundant.
Instead, Aaron gave me a hug, we got a coffee, and I walked with him to his night shift at the Paradise. I sat at his station, and he served me tortilla soup--yummy--and mac and cheese balls--decadent. Then I took a leisurely walk home, delighting in the evening sunlight and shadows, smiling at the flowering vines that hung playfully over fences, gazing at beauty large and small. I stopped at Portfolio Coffeehouse and looked at the photographs on the wall, as I had read that Sarah Vinci, a photographer I profiled for Long Beach Magazine, was featured. There I happened upon Victor, my next-door neighbor, and his friend Amy. A pleasant exchange.
A walk in the loveliness of early evening was so much better for my mood and my heart than tears. I've got to keep the endorphins zinging so that I'll be glowing for the UCLA transplant review board!
Instead, Aaron gave me a hug, we got a coffee, and I walked with him to his night shift at the Paradise. I sat at his station, and he served me tortilla soup--yummy--and mac and cheese balls--decadent. Then I took a leisurely walk home, delighting in the evening sunlight and shadows, smiling at the flowering vines that hung playfully over fences, gazing at beauty large and small. I stopped at Portfolio Coffeehouse and looked at the photographs on the wall, as I had read that Sarah Vinci, a photographer I profiled for Long Beach Magazine, was featured. There I happened upon Victor, my next-door neighbor, and his friend Amy. A pleasant exchange.
A walk in the loveliness of early evening was so much better for my mood and my heart than tears. I've got to keep the endorphins zinging so that I'll be glowing for the UCLA transplant review board!
Would You Tell a Lie to Save a Life?
Would you tell a lie to save a life?
Anyone who has taken a philosophy course has run up against this question. Someone will give a hokey scenario such as a known murderer is looking for someone who is hiding in the next room, he asks you if you know where he can find his victim, and you lie to him, saying you have not seen the person he's looking for, thereby saving a life. This is often brushed off with: "Well, c'mon, how many times does that ever happen?"
Well, it's happening to me now. I am the person who is hiding in the next room, and my nephrologist is the person who knows where I am. He knows, and so do I, that patients who are on the transplant list live longer than those who are not because they're happier, they have hope, they have something to live for. Dr. Butman had told me this before, and he mentioned this again this afternoon.
I quipped, "Then why not lie to patients and tell them they're on the list even when they're not?" Of course, this would not be "ethical." But it could save lives. A classic case of the old philosophical quandry. Immaneul Kant may not have agreed, but I feel today as if I'd rather think I was on the list than know I'm not.
But I must remember that my case is on appeal. Though my voice broke slightly when I was speaking with Dr. Butman and though I told him I was going to have a good cry, I didn't. Instead I took a long walk, delighting in the play of evening sunlight and shadows. Besides, I had a good cry last night. I don't want to overdo it.
Anyone who has taken a philosophy course has run up against this question. Someone will give a hokey scenario such as a known murderer is looking for someone who is hiding in the next room, he asks you if you know where he can find his victim, and you lie to him, saying you have not seen the person he's looking for, thereby saving a life. This is often brushed off with: "Well, c'mon, how many times does that ever happen?"
Well, it's happening to me now. I am the person who is hiding in the next room, and my nephrologist is the person who knows where I am. He knows, and so do I, that patients who are on the transplant list live longer than those who are not because they're happier, they have hope, they have something to live for. Dr. Butman had told me this before, and he mentioned this again this afternoon.
I quipped, "Then why not lie to patients and tell them they're on the list even when they're not?" Of course, this would not be "ethical." But it could save lives. A classic case of the old philosophical quandry. Immaneul Kant may not have agreed, but I feel today as if I'd rather think I was on the list than know I'm not.
But I must remember that my case is on appeal. Though my voice broke slightly when I was speaking with Dr. Butman and though I told him I was going to have a good cry, I didn't. Instead I took a long walk, delighting in the play of evening sunlight and shadows. Besides, I had a good cry last night. I don't want to overdo it.
My Case is on Appeal
Upon arriving home from work tonight, I noticed that there was one message on my cell phone. Dr. Butman, my nephrologist, had called to say he wanted to talk to me about my transplant. Just late this morning I had spoken with Fe, the transplant coordinator, who had told me that she would be receiving a letter sometime this week with the Kaiser transplant review board's decision and at that time she would call me. Somehow Dr. Butman knew more than she did.
I called the PD clinic and was transferred three times before I could leave a message for the doctor. The last person I spoke with was Fe, who, voice pregnant with pauses, said that if Dr. Butman had called me, he should be the one to speak with me. Translation: I'd rather that he be the bearer of bad news.
Shortly thereafter, Dr. Butman returned my call. After some small talk about adjusting my blood pressure meds and an article he had copied for me from a nephrology journal, he told me the review board had rejected my application on the basis of the angiogram that was taken in 2006. He had known about the decision Friday evening, but perhaps hadn't wanted to break the news over the weekend.
The angiogram was taken, of course, before dialysis and the miraculous change in my energy level since then. As I wrote in a previous blog, I feel as if I have a new heart.
Dr. Butman said he hasn't given up hope, that he has already put in an appeal. Within a month, UCLA should call me about an appointment with the cardiologist on its kidney-transplant team. Dr. Butman feels that once the team sees how vibrant and spunky and full of life I am, I'll be given a second chance. Probably UCLA will want to get new data on my heart, which will mean a cardiac workup at UCLA.
I know that Dr. Butman is pulling for me, and I appreciate that. Aaron had been standing by while I was on the phone with him and commented that he spent a lot of time with me. Truly there have been several times when he's spent a half hour, even an hour with me. I sure appreciate that.
Some encouraging words: Dr. Butman said that he would not string me along, that he has not allowed patients to go forward with the process because he felt they were not viable candidates, but he doesn't feel that way about me. He also said that he had had a frail, 80-year-old patient who had been approved by UCLA and that I sure looked a lot healthier than he did.
So my case is on appeal. It's as if Dr. Butman is my attorney, and I have just lost the jury trial in the lower court. Now I have to wait for the higher court to review my case and see if it will grant me a hearing. Like a Death Row inmate, all I can do is wait, as my fate is in the hands of unseen others.
I called the PD clinic and was transferred three times before I could leave a message for the doctor. The last person I spoke with was Fe, who, voice pregnant with pauses, said that if Dr. Butman had called me, he should be the one to speak with me. Translation: I'd rather that he be the bearer of bad news.
Shortly thereafter, Dr. Butman returned my call. After some small talk about adjusting my blood pressure meds and an article he had copied for me from a nephrology journal, he told me the review board had rejected my application on the basis of the angiogram that was taken in 2006. He had known about the decision Friday evening, but perhaps hadn't wanted to break the news over the weekend.
The angiogram was taken, of course, before dialysis and the miraculous change in my energy level since then. As I wrote in a previous blog, I feel as if I have a new heart.
Dr. Butman said he hasn't given up hope, that he has already put in an appeal. Within a month, UCLA should call me about an appointment with the cardiologist on its kidney-transplant team. Dr. Butman feels that once the team sees how vibrant and spunky and full of life I am, I'll be given a second chance. Probably UCLA will want to get new data on my heart, which will mean a cardiac workup at UCLA.
I know that Dr. Butman is pulling for me, and I appreciate that. Aaron had been standing by while I was on the phone with him and commented that he spent a lot of time with me. Truly there have been several times when he's spent a half hour, even an hour with me. I sure appreciate that.
Some encouraging words: Dr. Butman said that he would not string me along, that he has not allowed patients to go forward with the process because he felt they were not viable candidates, but he doesn't feel that way about me. He also said that he had had a frail, 80-year-old patient who had been approved by UCLA and that I sure looked a lot healthier than he did.
So my case is on appeal. It's as if Dr. Butman is my attorney, and I have just lost the jury trial in the lower court. Now I have to wait for the higher court to review my case and see if it will grant me a hearing. Like a Death Row inmate, all I can do is wait, as my fate is in the hands of unseen others.
Sunday, March 08, 2009
Listening 101
It's not that this is a new revelation, but once again, I am seeing how emotionally handicapped the vast majority of people are. Rare is the person who knows how to listen to another's pain. Instead, people adopt one of several strategies to make the person in need shut up.
1) Deflect attention away from the subject at hand and toward something that happened to the listener. You tell someone you have cancer, and she will tell you when her immune system wasn't 100 percent and she caught a cold.
2) Avoid eye contact, divert attention to something else in the environment, look bored, or gaze at the wall clock.
3) Tell the person in pain that others have it so much worse than she does. This strategy is especially effective at getting the person to shut up as its message is "You have no right to feel bad. Stuff your feelings."
I have gotten all of the above responses from the healthcare providers at Kaiser--people whose job it is to offer support! Even from a social worker! And it's not that I've gone on and on about how I'm feeling, only one or two sentences before I'm shut down.
I got the same response from the so-called kidney support group. The leader told me that many people in the group have gone through so much more than me, even before she even knew what I've been through.
Ironically, the posters in the patient rooms encourage asking for support from friends, family, support-group members, and healthcare professionals.
So, for anyone who is reading this, here is Lesson One in Listening 101:
If someone comes to you with an emotional problem, if she is sad or lonely or depressed, don't tell her that others have it worse than she does. She may agree with you on an intellectual level, but that is not where she is at that moment. Instead, simply listen, provide good eye contact, and if appropriate, hold her hand, stroke her back, or give her a hug. Do not respond on an intellectual, problem-solving level. Simply let her air her feelings. You are there to listen intently. Your presence is what is needed, not your advice. Later perhaps, after she has calmed down, after she has voiced things she has perhaps not been able to voice previously, then she may ask for your help in sorting things out or making a plan of action. But at this moment, hold back from doing that. It is not wanted at this time and will only be perceived as an attempt to make her shut up.
1) Deflect attention away from the subject at hand and toward something that happened to the listener. You tell someone you have cancer, and she will tell you when her immune system wasn't 100 percent and she caught a cold.
2) Avoid eye contact, divert attention to something else in the environment, look bored, or gaze at the wall clock.
3) Tell the person in pain that others have it so much worse than she does. This strategy is especially effective at getting the person to shut up as its message is "You have no right to feel bad. Stuff your feelings."
I have gotten all of the above responses from the healthcare providers at Kaiser--people whose job it is to offer support! Even from a social worker! And it's not that I've gone on and on about how I'm feeling, only one or two sentences before I'm shut down.
I got the same response from the so-called kidney support group. The leader told me that many people in the group have gone through so much more than me, even before she even knew what I've been through.
Ironically, the posters in the patient rooms encourage asking for support from friends, family, support-group members, and healthcare professionals.
So, for anyone who is reading this, here is Lesson One in Listening 101:
If someone comes to you with an emotional problem, if she is sad or lonely or depressed, don't tell her that others have it worse than she does. She may agree with you on an intellectual level, but that is not where she is at that moment. Instead, simply listen, provide good eye contact, and if appropriate, hold her hand, stroke her back, or give her a hug. Do not respond on an intellectual, problem-solving level. Simply let her air her feelings. You are there to listen intently. Your presence is what is needed, not your advice. Later perhaps, after she has calmed down, after she has voiced things she has perhaps not been able to voice previously, then she may ask for your help in sorting things out or making a plan of action. But at this moment, hold back from doing that. It is not wanted at this time and will only be perceived as an attempt to make her shut up.
My Cabin in Winter
Here is my cabin in its winter splendor, photo courtesy of my dear friend in Nova Scotia, Helene. She watches over my northern estate in my absence.
This photo and the one below of the shed on the property make me a little sad. Or maybe it's just that I'm a little sad already. I wonder if I will ever see my cabin again.
The days of stashing my possessions in a storage unit and taking off on a three-month, back-roads camping trip across the continent are gone. Even if I could be gone that long--I am obligated to be seen at my PD clinic once every 30 days at minimum--how would I ever take along all the supplies? I'd need a semi following me with dialysis bags, IV pole, tubing, cleaning supplies, surgical masks, medical tape, gynecological wipes (that are used following hand-washing to kill more germs), paper towels, clamps, anti-bacterial caps and ointment, and hydrogen peroxide. At least 50 pounds per day! For a three-month trip, that would mean hauling 4,500 pounds of supplies.
And yet this is how out of touch people are when I say I feel that everything I enjoy is being taken away from me. The dietician at the PD clinic said there was no reason why I couldn't be gone for a month. She just doesn't get it. Sure, if I were going to be in one location, I could have the supplies delivered there, but not if I'm traveling from point to point and living in my truck--which is what my plan had been up until a few months ago. I had planned on traveling in my vehicle, writing and editing from the road, like I did in the summers of 2005 and 2006. How profoundly things have changed!
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