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."
Friday, March 13, 2009
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!
Saturday, March 07, 2009
A Visitation from a Long-deceased Friend
On my way out of my apartment building yesterday, I met up with the spirit of my long-deceased childhood friend--my canine companion, Taffy.
I had already gotten to my truck, then realizing I had forgotten something inside my abode, I went back to fetch it. As I walked down the stairs from the central courtyard to the sidewalk, a dog with Taffy's compassionate, brown eyes and her golden retriever-mutt coloring appeared. Her owner, a jaunty guy in his mid-30s kept smiling and saying that in all the years he had walked Brandy past this apartment building, she had never before stopped and ventured up the stairs.
As her owner carried on in this vein, so incredulous that Brandy should break habit, I stroked her soft head and petted her sides, all the while deeply touched by how adoringly she gazed at me. I told the owner of Taffy and how Brandy seemed so much like her.
I so wish I had asked if I could take their picture, but I didn't. Perhaps I'll see them again if I leave my apartment about the same time some morning.
I had the intense feeling that, not only did Brandy look and act like Taffy, but that she was Taffy, my very best friend throughout childhood, truly my only friend. If not for Taffy, I'm sure I would have not survived to adulthood. Even now I'm getting a bit teary-eyed.
It was as if Brandy were sending me the message: Heidi, you need to get a dog. You need someone who will be there for you, unconditionally, every day, who will give you such healing love, love that you need for your emotional, physical, and spiritual well-being.
I think of what my nature goddess-friend Araia, who lives in a remote corner of northeastern Washington state, said about animals taking on the illness of their owners and releasing their owners from this burden. Like the old English concept of "sin eaters," people who were hired after a death to feast and by so doing symbolically and literally "eat" the sins of the deceased. But rather than for money, the animal does this out of a pure sense of love.
I have thought about a dog for many years. Aaron is readying himself for graduate school, and he needs to feel free to move to wherever he needs to go for his education and his career. He is the only person I've ever felt completely at ease with, 100 percent accepted for who I am. I deeply need someone to love and to be loved in return, someone who will listen and not judge, a life-long companion. Of course, wouldn't it be nice if such a man appeared, but the man who is inside my head and heart and dreams perhaps does not yet exist in the outside world. Perhaps Araia's words will prove true: "Heidi, once you get a dog, you'll never think about a man again."
******
It is now March 14, a week after I wrote the above. I now see this incident in a different light. The day I met up with Brandy was the day the Kaiser transplant board met and decided to reject my application. I now see Brandy as an angel with a message: "You are not alone, Heidi. You have beings who are looking out for you. We have sent this dog to you with this message of love."
I have been asking Archangel Michael to make an appearance, that it would really be wonderful to see him again. Perhaps this is how he manifested, quite a bit gentler than my first encounter.
Mid-day Exchange
Yesterday I was at the PD clinic from 8:15 a.m. to 4:30 p.m., getting lab tests, receiving training from a PD nurse, and seeing a nephrologist, a dietician, and a social worker.
Dr. Butman, my primary nephrologist, gave me a journal article on a clinical study of dialysis patients who were put on a "tidal" program, in which some fluid is left in the peritoneum after each cycle of the dialysis machine. This is the technique he is trying on me, as I continue to have severe cramping during treatment and keeping some fluid inside should prevent any rubbing of organs or of the catheter against the organs. That's the theory at least.
In turn, I gave him a copy of the book I wrote on traditional Chinese medicine. I have the feeling he will actually read it and, hopefully, it will open up his mind a bit.
Yesterday I was also hit with yet another layer to the whole dialysis thing: I now have to conduct mid-day exchanges in order to obtain better clearance of toxins. Most people are on either four one-hour exchanges per day or one one-hour and one 10-hour exchanges in a 24-hour period. I was hoping I would only have to do the nightly 10-hour treatment, but that means being dry (not having any fluid inside the peritoneum) during the day, which results in pain and a build-up of toxins during the course of the day. Keeping fluid inside all day has its problems too: The fluid is full of toxins that are re-absorbed into system if they are not drained out within eight hours, thereby defeating the whole purpose of dialysis. So...now I must be home every day around noon to conduct a mid-day exchange.
I am not happy with this situation, but I'm accepting it. Since I started dialysis on Feb. 2, I have been invited to maybe a half dozen events, all of which I have not been able to attend because I have to get hooked up to the cycler by 9:30 p.m. at the latest and some nights as early as 7. Now it will also be difficult to see friends for lunch or a daytime excursion. Basically, the only time I have available is 1-7 p.m. Not much to work with. Seems as if I will have to go out on disability if I ever hope to see anyone but my son and my doctors ever again!
Dr. Butman, my primary nephrologist, gave me a journal article on a clinical study of dialysis patients who were put on a "tidal" program, in which some fluid is left in the peritoneum after each cycle of the dialysis machine. This is the technique he is trying on me, as I continue to have severe cramping during treatment and keeping some fluid inside should prevent any rubbing of organs or of the catheter against the organs. That's the theory at least.
In turn, I gave him a copy of the book I wrote on traditional Chinese medicine. I have the feeling he will actually read it and, hopefully, it will open up his mind a bit.
Yesterday I was also hit with yet another layer to the whole dialysis thing: I now have to conduct mid-day exchanges in order to obtain better clearance of toxins. Most people are on either four one-hour exchanges per day or one one-hour and one 10-hour exchanges in a 24-hour period. I was hoping I would only have to do the nightly 10-hour treatment, but that means being dry (not having any fluid inside the peritoneum) during the day, which results in pain and a build-up of toxins during the course of the day. Keeping fluid inside all day has its problems too: The fluid is full of toxins that are re-absorbed into system if they are not drained out within eight hours, thereby defeating the whole purpose of dialysis. So...now I must be home every day around noon to conduct a mid-day exchange.
I am not happy with this situation, but I'm accepting it. Since I started dialysis on Feb. 2, I have been invited to maybe a half dozen events, all of which I have not been able to attend because I have to get hooked up to the cycler by 9:30 p.m. at the latest and some nights as early as 7. Now it will also be difficult to see friends for lunch or a daytime excursion. Basically, the only time I have available is 1-7 p.m. Not much to work with. Seems as if I will have to go out on disability if I ever hope to see anyone but my son and my doctors ever again!
Monday, March 02, 2009
White Light March 6
This Friday, March 6, sometime during the day, Kaiser's transplant review board meets to decide my fate. If its members give me the go-ahead, then my files are forwarded to UCLA to go before another review board. If the UCLA board gives me the thumbs up, then I am scheduled to see a UCLA doctor, who may order tests beyond those I have already undergone to get to this point. If I pass, then I am put on the transplant list.
So...please white light March 6. Any time during the day, if I should cross your mind, see the review board shouting, "Yes, Heidi!"
Monday, February 23, 2009
How I Used to Think of Dialysis Patients
The other day I had to tell someone that I'm on dialysis. She and her friend were horrified, with expressions that indicated they'd just seen a ghost. And yet to the objective eye, I looked good, even healthy. But what they saw was a cadaver.
I thought back to how I used to think of dialysis patients until just recently. I, too, had thought of them as cadavers, on their way out. Not that I had had that much contact with them, but the few instances stand out in my mind.
Shortly after I delivered Aaron--now almost 23 years ago--my doctor wrote a referral to a nephrologist. This memory is rather dim in some respects, but I remember that his office was in a hemodialysis clinic. The patients were abject and gaunt and much, much older than me, 50 years older. The nephrologist gave me a mildly inappropriate examination, palpating my belly over and over again, and resting his hand on my vulva as he spoke to me. I suppose I was the youngest thing he'd seen at the clinic in a very long time.
After that, I didn't see a nephrologist for maybe 15 years. In retrospect, no doubt a mistake.
I did have a student in one of my classes at Cal State in the late '80s who was a dialysis patient. She was perhaps in her early or mid-30s. When she explained her situation to me, I automatically thought of her days as numbered, even though she didn't look sick.
And then there was my friend Georgette's mom. I never met her, but I knew she was on dialysis. And then she died.
Now things are different, now that I'm one of the undead! I realize I have health challenges, and I know what the odds are--the average life span on dialysis is five years, the wait for a cadaver's kidney in So Cal is nine years. But even so, I sure don't feel that death is breathing down my neck.
An old lesson learned once again: Viewing the world from the inside out is a lot different than seeing it from the outside and imagining the interior.
I thought back to how I used to think of dialysis patients until just recently. I, too, had thought of them as cadavers, on their way out. Not that I had had that much contact with them, but the few instances stand out in my mind.
Shortly after I delivered Aaron--now almost 23 years ago--my doctor wrote a referral to a nephrologist. This memory is rather dim in some respects, but I remember that his office was in a hemodialysis clinic. The patients were abject and gaunt and much, much older than me, 50 years older. The nephrologist gave me a mildly inappropriate examination, palpating my belly over and over again, and resting his hand on my vulva as he spoke to me. I suppose I was the youngest thing he'd seen at the clinic in a very long time.
After that, I didn't see a nephrologist for maybe 15 years. In retrospect, no doubt a mistake.
I did have a student in one of my classes at Cal State in the late '80s who was a dialysis patient. She was perhaps in her early or mid-30s. When she explained her situation to me, I automatically thought of her days as numbered, even though she didn't look sick.
And then there was my friend Georgette's mom. I never met her, but I knew she was on dialysis. And then she died.
Now things are different, now that I'm one of the undead! I realize I have health challenges, and I know what the odds are--the average life span on dialysis is five years, the wait for a cadaver's kidney in So Cal is nine years. But even so, I sure don't feel that death is breathing down my neck.
An old lesson learned once again: Viewing the world from the inside out is a lot different than seeing it from the outside and imagining the interior.
Insight of the Week
Sometimes someone says something that just resonates in your very soul as the truth and you can't stop thinking about it. This is what happened this past Saturday at the Kidney Beings (cute, huh!) support group meeting.
I voiced my frustration and anger about the miscommunication, withholding of information, and insufficient training I have experienced with the PD clinic. One long-time support group member said she thought I had been treated shabbily and had been inadequately trained in PD therapy, but then added, "Just remember this, Heidi: Long after you are dead, everyone at the PD clinic will still have a job."
Boy, there are so many ways one can take what she said! In its tamest form, it means: Don't get yourself worked up about things you can't change. You're dealing with an entrenched system that is sometimes dysfunctional, but it is too big of a job to try to reform it. All you need be concerned about is your care, not changing the way an inefficient and faulty system operates because 20 years from now, it's probably still going to be operating in the same dysfunctional way.
A harsher way of viewing her comment is most likely also true: So many kidney patients die within a few years of beginning dialysis. In fact, the average life expectancy on dialysis is only five years. So, during the course of a career as a PD nurse or a nephrologist, one is apt to see many, many patients die. So perhaps they figure that inconsistent instructions or no instructions or the wrong doses of medications are no big deal, that if it's not this that kills a patient, something else will. So in other words, sloppiness is not something that needs to be prevented because there's so much that can go wrong with a kidney patient that some slip-ups could never be tracked back to a single cause.
Also, as in any profession, for most people, it's just a job, something to pay the bills. It's not a life calling or a mission or a labor of love. If I die or if 40 percent of the patients die in any given year, so what, we still get a check!
I am so grateful for Debbie's comment. It puts everything in perspective. Her comment makes it clear that I can't assume that the nurses and doctors are focused on their job. They could very well be like the grocery store clerks who, when you tell them you don't need a bag, they look right at you, say "OK," and put your purchase into a bag.
The bottom line is that I have to watch out for myself because no one else may be doing that. I have always been an ask-questions patient, an informed purveyor of medical services, but now I will have to increase my vigilance. Because that's MY job!
I voiced my frustration and anger about the miscommunication, withholding of information, and insufficient training I have experienced with the PD clinic. One long-time support group member said she thought I had been treated shabbily and had been inadequately trained in PD therapy, but then added, "Just remember this, Heidi: Long after you are dead, everyone at the PD clinic will still have a job."
Boy, there are so many ways one can take what she said! In its tamest form, it means: Don't get yourself worked up about things you can't change. You're dealing with an entrenched system that is sometimes dysfunctional, but it is too big of a job to try to reform it. All you need be concerned about is your care, not changing the way an inefficient and faulty system operates because 20 years from now, it's probably still going to be operating in the same dysfunctional way.
A harsher way of viewing her comment is most likely also true: So many kidney patients die within a few years of beginning dialysis. In fact, the average life expectancy on dialysis is only five years. So, during the course of a career as a PD nurse or a nephrologist, one is apt to see many, many patients die. So perhaps they figure that inconsistent instructions or no instructions or the wrong doses of medications are no big deal, that if it's not this that kills a patient, something else will. So in other words, sloppiness is not something that needs to be prevented because there's so much that can go wrong with a kidney patient that some slip-ups could never be tracked back to a single cause.
Also, as in any profession, for most people, it's just a job, something to pay the bills. It's not a life calling or a mission or a labor of love. If I die or if 40 percent of the patients die in any given year, so what, we still get a check!
I am so grateful for Debbie's comment. It puts everything in perspective. Her comment makes it clear that I can't assume that the nurses and doctors are focused on their job. They could very well be like the grocery store clerks who, when you tell them you don't need a bag, they look right at you, say "OK," and put your purchase into a bag.
The bottom line is that I have to watch out for myself because no one else may be doing that. I have always been an ask-questions patient, an informed purveyor of medical services, but now I will have to increase my vigilance. Because that's MY job!
Saturday, February 21, 2009
My New Decor
How do you like my new decor? It's the therapy look. Pictured here is the cycler, the machine I hook up to at night. Also the side table that I used at first, before I bought my spiffy therapy table on wheels, with shelves for surgical masks, gynecological towelettes for cleaning my hands before hooking up; clamps; gauze; hydrogen peroxide; rolls and rolls of medical tape; and a dialysis bag connector.
And here's the collection jug and the container with bleached, white towels that I place on my lap when doing the hook-up so that the transfer set doesn't rub up against my germ-laden attire. One towel per day because any item that sits out collects dirt and germs.
On the days I took these photos, my supplies were tucked under my bed. But when I receive an order of dialysis bags, antibacterial caps for the transfer set, tubing, and all the rest, not everything fits under the bed, and I have boxes stacked in the living room and up against the bedroom walls. I asked for and was granted a bimonthly--rather than a monthly--shipment. Thank goodness because otherwise there would be no room for me inside my apartment!
Friday, February 20, 2009
My Belly Buried Under a Lot of Tape
This is a photo I took of my belly 10 days post-surgery. The swelling has gone down considerably since then, but the bandages and tubing are quite similar.
At the upper edge of the photo is the PD belt, an elastic band that goes about my waist into which I can insert the transfer set (the end of the tube that gets hooked up to the dialysis machine). This keeps the transfer set from dangling and thereby prevents it from getting snagged, pulled, or dirtied.
The warning sign on the post-surgery dressing has been removed. The message shown on this photo says that only a PD nurse can touch the dressing, with numbers at which the on-call nurse can be reached.
But otherwise, this is it, folks.
Perhaps this is how someone who grew a third arm or leg while sleeping might feel. She wakes up in the morning, and there it is--another appendage! It's still all so strange and even a bit creepy.
I have to touch my belly to wash it with antibacterial soap, dab it with peroxide, and douse it with special cream every day, but otherwise, I don't touch it. I used to lie in bed at night and rub my belly. I was so pleased with its shape, its tautness, its size that was smaller than most women's my age, for sure. I really liked my belly.
Recently I noticed the tubing under the skin. Not just at the exit site, but several places, as if a foot or more of tubing is coursing its way just under the surface.
This marks a completely new stage of my life. Before, I slept alone every night, but I sure looked like someone who should be sleeping with someone. Nobody was with me, but damn if I didn't look like a woman who should be having great sex every night! Every once in a while, I would stand before a floor-length mirror in just my skivvies and smile, thinking of what I would love to have a lover doing with me.
But now when I do look in the mirror, I look from the breasts up.
It's just really difficult to accept that from now on until the day I die, there is so little hope of a relationship. If no one of interest to me was interested before, why in the hell would someone be interested now!
And it's not just the PD paraphernalia either. It's the insulin pump, shown here in the black case I can slip it into and then clip to my belt or the top of my skirt. Otherwise, I stuff it into a baby sock and nestle it in my underwear.
At least with the insulin pump, I could remove it if I didn't want a "date" to see it. The site is changed every three days anyway, so I could just remove the infusion site, the tubing, and the pump for the duration of the "date." My blood sugar would be a little high afterward, as I wouldn't be receiving the 20-times-an-hour mini-infusions of insulin, but I could correct for that by giving myself a bolus post-date.
But there's no removing the catheter. It's lodged into my mid-section and would require an extreme yank to free it. Just thinking of this gives me a shiver.
So all of this is why I wonder, Even if someone were interested in approaching me, however could he manage that?
Dialysis is Easy, Like Prison and War
I spoke with someone yesterday who closed the conversation with "I'm glad dialysis is easy." This is a classic case of confusing a good attitude with a good situation.
Just because I'm not crying on anyone's shoulder or voicing any complaints doesn't mean this is easy. Two men who were very interested in me before they knew I had started dialysis are now not returning my calls. Many friends have written me off, figuring, I suppose, that I'm on my way out, so why bother. My opportunities for social engagement have been severely curtailed due to the time constraints of dialysis and doctor visits. And I wonder if anyone will ever want to touch me again, and even if someone does, how is he to do it without interfering with my tubing or contaminating my exit site?
So, yes, dialysis is easy in the same way that prison and war must be easy: You have to learn to cope because not coping just adds another layer of woe to the situation. Accept or die. Those are the options.
Just because I'm not crying on anyone's shoulder or voicing any complaints doesn't mean this is easy. Two men who were very interested in me before they knew I had started dialysis are now not returning my calls. Many friends have written me off, figuring, I suppose, that I'm on my way out, so why bother. My opportunities for social engagement have been severely curtailed due to the time constraints of dialysis and doctor visits. And I wonder if anyone will ever want to touch me again, and even if someone does, how is he to do it without interfering with my tubing or contaminating my exit site?
So, yes, dialysis is easy in the same way that prison and war must be easy: You have to learn to cope because not coping just adds another layer of woe to the situation. Accept or die. Those are the options.
Decoration in the Lives of Others
What I am to write here is not a new idea. Truly, I have wondered about this for many years. It's just that I feel it quite acutely right now.
We are all mere decorations in the lives of others. There, I've said it. I'm sure that many will protest, claiming that they care deeply about many people. But they're not being honest with themselves or with others.
I write this, not as a cynic, but as an observer of human behavior. It is no less cynical than if I were to write "We all will die." This is a statement of fact, and saying otherwise is tantamount to denial.
What I mean by "decoration" is that we decorate the lives of the people who know us. We make their lives more colorful by association with us. They may appreciate us for our tennis skills or our adventuresome spirit or our talent for flying kites--or our damn good attitude when faced with kidney dialysis. We are a decoration that adds to the color of the other person's life. He or she can then tell others, "Oh, yes, my friend Kelly is a fantastic tennis player" or "My neighbor Lester just returned from a three-month trek through the Amazon" or "I know the national kite-flying champion" or "My friend Heidi is on dialysis."
There's nothing fundamentally wrong with this. It's actually quite lovely that we appear on stage and give our performances and that others are amused. Kind of like Burning Man, yes?
Most people fall into this category of decoration. We realize on some level that they have their lives and their significant others and that we are somewhere on the periphery. We are not central to their existence. I mean, how could we be? However could we be central to the lives of all those who know us!
We are not the Christmas tree, but one of the decorations. If one of the glass bulbs breaks or is lost or stolen, the tree remains. The bulb is replaced--or not. Some trees have more decorations, others fewer. But the decorations are not the tree.
In contrast to the decoration people are the few, rare tree people. If we're lucky, we have perhaps one person who cares about us in a daily, ongoing, substantial way. If one is exceedingly lucky, that person is a life partner, a lover, and a best friend wrapped into one. Someone whose life is entwined with yours. Someone who loves you in a selfless, lay-down-his-life-for-you kind of way.
Sometimes, I'm sure, this person is a friend, but this kind of friend is exceedingly rare in our society. This would be someone you've seen every day of your life, who lives in the same village, went to the same school, married your cousin. Someone who was there with you when you went off to war, who served by your side. Or someone who helped deliver your babies, and you in turn helped deliver hers. Someone who was there when your grandparents died, and held you as you wept when your mother, father, sister, or brother died. A friend of gold, as Aristotle said, not a friend who has a shared interest and when the interest is no longer there, the friendship ends. No, this is the type of friendship, the philosopher wrote, that consists of two bodies but one soul.
I've long known that the person who cares about me in a fundamental way is my son, and I, of course, care for him. But I've also known that he has his life to lead, and most likely he will be off to graduate school in the fall, in New York or Boston or San Francisco or some other city.
And that's why I've always wanted a dog. Unfortunately, I've always lived in an apartment in which dogs are not allowed. A dog loves in an always-there-for-you way. You are never a decoration for a dog.
But now that path seems closed off to me, as a dog increases the risk of infection, and a dog may jump up and tug at my tubing. Yikes!
Every time I see a dog now, my heart aches a bit. How I would love to have its affections! I could really use some unconditional love right now from a four-legged creature who couldn't care less about tubing and a catheter. Who would see those as decorations and not as the tree.
We are all mere decorations in the lives of others. There, I've said it. I'm sure that many will protest, claiming that they care deeply about many people. But they're not being honest with themselves or with others.
I write this, not as a cynic, but as an observer of human behavior. It is no less cynical than if I were to write "We all will die." This is a statement of fact, and saying otherwise is tantamount to denial.
What I mean by "decoration" is that we decorate the lives of the people who know us. We make their lives more colorful by association with us. They may appreciate us for our tennis skills or our adventuresome spirit or our talent for flying kites--or our damn good attitude when faced with kidney dialysis. We are a decoration that adds to the color of the other person's life. He or she can then tell others, "Oh, yes, my friend Kelly is a fantastic tennis player" or "My neighbor Lester just returned from a three-month trek through the Amazon" or "I know the national kite-flying champion" or "My friend Heidi is on dialysis."
There's nothing fundamentally wrong with this. It's actually quite lovely that we appear on stage and give our performances and that others are amused. Kind of like Burning Man, yes?
Most people fall into this category of decoration. We realize on some level that they have their lives and their significant others and that we are somewhere on the periphery. We are not central to their existence. I mean, how could we be? However could we be central to the lives of all those who know us!
We are not the Christmas tree, but one of the decorations. If one of the glass bulbs breaks or is lost or stolen, the tree remains. The bulb is replaced--or not. Some trees have more decorations, others fewer. But the decorations are not the tree.
In contrast to the decoration people are the few, rare tree people. If we're lucky, we have perhaps one person who cares about us in a daily, ongoing, substantial way. If one is exceedingly lucky, that person is a life partner, a lover, and a best friend wrapped into one. Someone whose life is entwined with yours. Someone who loves you in a selfless, lay-down-his-life-for-you kind of way.
Sometimes, I'm sure, this person is a friend, but this kind of friend is exceedingly rare in our society. This would be someone you've seen every day of your life, who lives in the same village, went to the same school, married your cousin. Someone who was there with you when you went off to war, who served by your side. Or someone who helped deliver your babies, and you in turn helped deliver hers. Someone who was there when your grandparents died, and held you as you wept when your mother, father, sister, or brother died. A friend of gold, as Aristotle said, not a friend who has a shared interest and when the interest is no longer there, the friendship ends. No, this is the type of friendship, the philosopher wrote, that consists of two bodies but one soul.
I've long known that the person who cares about me in a fundamental way is my son, and I, of course, care for him. But I've also known that he has his life to lead, and most likely he will be off to graduate school in the fall, in New York or Boston or San Francisco or some other city.
And that's why I've always wanted a dog. Unfortunately, I've always lived in an apartment in which dogs are not allowed. A dog loves in an always-there-for-you way. You are never a decoration for a dog.
But now that path seems closed off to me, as a dog increases the risk of infection, and a dog may jump up and tug at my tubing. Yikes!
Every time I see a dog now, my heart aches a bit. How I would love to have its affections! I could really use some unconditional love right now from a four-legged creature who couldn't care less about tubing and a catheter. Who would see those as decorations and not as the tree.
Thursday, February 19, 2009
Yet Another Bout with Death, late 2007
The following post was first published some time in late 2007:
Once again, I have been plucked from the hands of death. Not more than an hour ago, I was slipping over to “the other side,” but for the 200th or so time in my life, I was spared.
As an insulin-dependent diabetic, I often walk that line between life and death. Though elevated blood sugar wrecks long-term damage, such as heart and kidney failure, it is the low blood sugars that are the most worrisome. When my blood sugar dips, fuel is not getting to my body, and my brain shuts down too. My response varies greatly, from paranoia to an oppressive feeling that everything that is transpiring in the world is somehow my doing, my fault. When my son is with me during an insulin reaction, I often revert to the emotional wherewithal of a preschooler, whining that he is going to abandon me when he runs off to find some orange juice or chocolate to give my sugar a boost.
Sometimes I lose consciousness, as I did at Hof’s Hut a few years ago. I had taken my shot before walking the mile or so to the restaurant with my son—definitely not a smart idea. The place was packed, and so our meal was delayed. While waiting for the food, I dipped into insulin shock, becoming hostile when Aaron tried to get me to drink some orange juice, then collapsing into my bowl of soup. Aaron summoned paramedics, who gave me glucose intravenously, as I was unable to swallow. One clear sign of low blood sugar is my biting at orange juice while it spills out of my mouth, unable as I am to negotiate the simple act of swallowing liquids.
Sometimes low blood sugar hits me in the middle of the night. These are especially dangerous times, as I’m asleep and I live alone. So many times I have awoken to find my nightshirt, my sheets, and my pillows drenched in sweat, literally dripping in sweat. No, not perimenopausal drippings. Not even digging-a-trench-on-a-100-degree-day sweat. This is a sweat like no other. An adrenaline sweat. A this-could-be-my-last-moments-on-Earth kind of sweat. In one last ditch effort, my body is crying out for help, and its tears are this sweat. Wake up, Heidi! it’s screaming. Do something quick! There have been times when I’ve rolled back to sleep—not a good thing. Always, during these shadow moments when who I am is dissolving and I feel myself fading into another realm, something-I-know-not-what speaks up from inside me and shouts, Get something to eat! This aspect of self or of Self comes to the fore and takes charge. I stagger into the kitchen and find some juice and somehow get it into my mouth and down my throat. Once, during a middle-of-the-night plunge into darkness, I was so uncoordinated that I banged into walls, cutting my forehead and calves, and leaving a trail of blood on the carpet on my frantic trek to the refrigerator.
When I was pregnant with Aaron, my blood sugar once dropped so low that my then-husband came home from work to find me slumped against the living room wall, one eye staring upward, the other sunk downward at the carpet, unable to tell him my name. When the paramedics arrived and checked my blood sugar, it was 10, an insanely low level, as normal is between 70 and 140, and I begin feeling symptoms of low sugars at 65. Even though it was a hot summer day, I was shaking with cold. This was the first of five emergency-room visits during my pregnancy.
Last weekend, Aaron and I visited the South Coast Botanical Gardens. While walking the grounds, I began to slip into insulin shock, reverting to a scared, uncooperative two-year-old. After he somewhat revived me with one of the glucose tablets I keep in my purse and a slice of baklava I had squirreled away, held over from lunch, I marveled at the rock about 50 yards away. In my mind, I had been standing or sitting near that rock and had no conception of how I had walked from there to where I now stood. These are the space-time rifts I enter during insulin shock.
So, this morning was just such a brush with death in a long, long history—35 years to be exact—of brushes with death. I had gone downstairs to take out the garbage. In the courtyard I encountered Al, the manager. Every time I talk with him, he tells me of people he has threatened with bodily harm and of his Vietnam days. This time he went on about his bad-ass motorcycle-gang days in which he “didn’t kill no one, just bust up a bunch of bars and cars and took swings at a few cops.” After I had extricated myself from Al, I walked up the stairs to my apartment. Here I was given my first warning sign: I felt dizzy and had trouble walking.
I tried to write an article whose deadline is fast-approaching, but I couldn’t seem to get out the first word. I went to lie down—usually something I would consider shameful at 10 in the morning. I lay there, floating in and out of coherent thought, as a vague feeling of oppression descended upon me. Yet from some deep place within my soul emerged that saving voice: You need something to eat. I managed to push the covers off my legs and stumble into the kitchen, clutching the walls to steady me. I checked my blood sugar: 43. I looked in the fridge. Not much there. I began whimpering and whining, even though Aaron wasn’t there. I was becoming a small child and yet I knew I had to take care of myself—something the child definitely resented. Help me! Help me! I demanded like the scared little girl that I was. Please help me! I couldn’t find any juice or anything sweet besides a little bit of jam at the bottom of a jar. I spooned it out and wolfed it down. But I needed more. I grabbed a piece of bread and gnawed at it, crying and complaining like a frustrated child. The thought came to me that usually comes to me during these times: I’m dying. This is the last. Just lie down and pass over. But there, too, was that other voice, prodding me to eat something more, to pull through.
Because I am writing this, it is obvious that I did pull through. Once again. And this time, like all the other times, I said thank you afterwards. Thank you to that part of me that resisted the pull of death. Thank you to that voice deep within me, the voice of God (?), that wants me to pull through. Through these private, mostly solitary, bouts with mortality, I have come to know the divine in a way that few others can know. When all else is stripped away, when even the ground of my little self, my personality, is gone, something remains—life itself, calling to me to continue to live, again and again and again.
Once again, I have been plucked from the hands of death. Not more than an hour ago, I was slipping over to “the other side,” but for the 200th or so time in my life, I was spared.
As an insulin-dependent diabetic, I often walk that line between life and death. Though elevated blood sugar wrecks long-term damage, such as heart and kidney failure, it is the low blood sugars that are the most worrisome. When my blood sugar dips, fuel is not getting to my body, and my brain shuts down too. My response varies greatly, from paranoia to an oppressive feeling that everything that is transpiring in the world is somehow my doing, my fault. When my son is with me during an insulin reaction, I often revert to the emotional wherewithal of a preschooler, whining that he is going to abandon me when he runs off to find some orange juice or chocolate to give my sugar a boost.
Sometimes I lose consciousness, as I did at Hof’s Hut a few years ago. I had taken my shot before walking the mile or so to the restaurant with my son—definitely not a smart idea. The place was packed, and so our meal was delayed. While waiting for the food, I dipped into insulin shock, becoming hostile when Aaron tried to get me to drink some orange juice, then collapsing into my bowl of soup. Aaron summoned paramedics, who gave me glucose intravenously, as I was unable to swallow. One clear sign of low blood sugar is my biting at orange juice while it spills out of my mouth, unable as I am to negotiate the simple act of swallowing liquids.
Sometimes low blood sugar hits me in the middle of the night. These are especially dangerous times, as I’m asleep and I live alone. So many times I have awoken to find my nightshirt, my sheets, and my pillows drenched in sweat, literally dripping in sweat. No, not perimenopausal drippings. Not even digging-a-trench-on-a-100-degree-day sweat. This is a sweat like no other. An adrenaline sweat. A this-could-be-my-last-moments-on-Earth kind of sweat. In one last ditch effort, my body is crying out for help, and its tears are this sweat. Wake up, Heidi! it’s screaming. Do something quick! There have been times when I’ve rolled back to sleep—not a good thing. Always, during these shadow moments when who I am is dissolving and I feel myself fading into another realm, something-I-know-not-what speaks up from inside me and shouts, Get something to eat! This aspect of self or of Self comes to the fore and takes charge. I stagger into the kitchen and find some juice and somehow get it into my mouth and down my throat. Once, during a middle-of-the-night plunge into darkness, I was so uncoordinated that I banged into walls, cutting my forehead and calves, and leaving a trail of blood on the carpet on my frantic trek to the refrigerator.
When I was pregnant with Aaron, my blood sugar once dropped so low that my then-husband came home from work to find me slumped against the living room wall, one eye staring upward, the other sunk downward at the carpet, unable to tell him my name. When the paramedics arrived and checked my blood sugar, it was 10, an insanely low level, as normal is between 70 and 140, and I begin feeling symptoms of low sugars at 65. Even though it was a hot summer day, I was shaking with cold. This was the first of five emergency-room visits during my pregnancy.
Last weekend, Aaron and I visited the South Coast Botanical Gardens. While walking the grounds, I began to slip into insulin shock, reverting to a scared, uncooperative two-year-old. After he somewhat revived me with one of the glucose tablets I keep in my purse and a slice of baklava I had squirreled away, held over from lunch, I marveled at the rock about 50 yards away. In my mind, I had been standing or sitting near that rock and had no conception of how I had walked from there to where I now stood. These are the space-time rifts I enter during insulin shock.
So, this morning was just such a brush with death in a long, long history—35 years to be exact—of brushes with death. I had gone downstairs to take out the garbage. In the courtyard I encountered Al, the manager. Every time I talk with him, he tells me of people he has threatened with bodily harm and of his Vietnam days. This time he went on about his bad-ass motorcycle-gang days in which he “didn’t kill no one, just bust up a bunch of bars and cars and took swings at a few cops.” After I had extricated myself from Al, I walked up the stairs to my apartment. Here I was given my first warning sign: I felt dizzy and had trouble walking.
I tried to write an article whose deadline is fast-approaching, but I couldn’t seem to get out the first word. I went to lie down—usually something I would consider shameful at 10 in the morning. I lay there, floating in and out of coherent thought, as a vague feeling of oppression descended upon me. Yet from some deep place within my soul emerged that saving voice: You need something to eat. I managed to push the covers off my legs and stumble into the kitchen, clutching the walls to steady me. I checked my blood sugar: 43. I looked in the fridge. Not much there. I began whimpering and whining, even though Aaron wasn’t there. I was becoming a small child and yet I knew I had to take care of myself—something the child definitely resented. Help me! Help me! I demanded like the scared little girl that I was. Please help me! I couldn’t find any juice or anything sweet besides a little bit of jam at the bottom of a jar. I spooned it out and wolfed it down. But I needed more. I grabbed a piece of bread and gnawed at it, crying and complaining like a frustrated child. The thought came to me that usually comes to me during these times: I’m dying. This is the last. Just lie down and pass over. But there, too, was that other voice, prodding me to eat something more, to pull through.
Because I am writing this, it is obvious that I did pull through. Once again. And this time, like all the other times, I said thank you afterwards. Thank you to that part of me that resisted the pull of death. Thank you to that voice deep within me, the voice of God (?), that wants me to pull through. Through these private, mostly solitary, bouts with mortality, I have come to know the divine in a way that few others can know. When all else is stripped away, when even the ground of my little self, my personality, is gone, something remains—life itself, calling to me to continue to live, again and again and again.
Another Heart Attack, January 2008
The following post was written in late January 2008. I removed it from my blog, along with a few other health-challenges posts, thinking that it might work against me, should I ever apply for a job and someone spot this information online. Now that I am fairly certain I will not be applying for any jobs--chosing instead to freelance once again after I leave Cal State--I thought I'd make these posts public again.
On Thursday, some time on Thursday, I had another heart attack. Yes, I'm such a trooper with such a high tolerance for pain that I can't say exactly when it happened.
All day I had been having chest pain, but it was not bad enough to complain about. Occasionally, I would rub my chest, which always helps a bit, but I went on teaching and even at one point got on my soapbox to decry the loss of civil liberties and the dearth of presidential candidates who seem even remotely concerned that the First and Fourth Amendments to the Constitution are virtually null and void.
That evening I met Michelle, a former student, for dinner at Hof's Hut. By then, I was feeling pretty awful. My blood sugar was way off the scale, somewhere over 600, as my blood monitor doesn't register anything above that level, only flashes HIGH BLOOD GLUCOSE. I had changed my insertion site that morning, but I guess the pump wasn't delivering any insulin and maybe hadn't been delivering any all day. When the insulin pump works, it works great, but when it doesn't work, it really messes things up.
I really didn't feel like eating. I was extremely weak and tired and sick to my stomach. But Michelle was hungry, and I didn't want to be a spoil sport, so I ordered a dinner salad. I picked at it a bit, then things turned from bad to worse. I felt an immanent purge coming on, grabbed a few napkins, hastily excused myself, and managed to contain most of my barf in the napkins as I rushed to the ladies' room. Michelle followed.
She asked me if she could do anything. From my compromised position, kneeling before the bowl, I managed a chuckle. "I guess you've seen worse than this in the military," I said to a woman who served in Afghanistan. She admitted that she had.
Michelle offered to take me to the ER, but I thought what I was experiencing was merely high blood sugar, which produces ketones that act as a poison to the system and can cause vomiting.
Once home, I called Mary Kay, a very dedicated, call-me-any-time-of-the-day-or-night diabetic nurse. She said it was crucial that I drink plenty of fluids and try to keep them down. I also took massive doses of insulin via a syringe because the pump was obviously not doing its job.
Still my blood sugar remained high--587. I called Tom and asked him to bring over some sugar-free ginger ale. By the time he arrived, I was so weak I could hardly move. Time to go to the ER.
I kept telling the intake nurses that I needed an IV and something to drink, but all they did was give me test after test--EKG, urine, blood pressure, temperature. Finally, after almost three hours, they gave me an IV and I began to stabilize. It was only then that I found out that, because of the elevated level of the heart enzyme troponin in my blood, I must have had a heart attack.
I stayed in the hospital until Saturday evening. Right now, I'm feeling fine. I'm able to walk and make my bed and do everything I need to do. Once again, I experienced a medical drama, but, thankfully, once again, I bounced back quickly. Another lease on life, another chance. Thanks so much to all forces and beings who are watching over me.
On Thursday, some time on Thursday, I had another heart attack. Yes, I'm such a trooper with such a high tolerance for pain that I can't say exactly when it happened.
All day I had been having chest pain, but it was not bad enough to complain about. Occasionally, I would rub my chest, which always helps a bit, but I went on teaching and even at one point got on my soapbox to decry the loss of civil liberties and the dearth of presidential candidates who seem even remotely concerned that the First and Fourth Amendments to the Constitution are virtually null and void.
That evening I met Michelle, a former student, for dinner at Hof's Hut. By then, I was feeling pretty awful. My blood sugar was way off the scale, somewhere over 600, as my blood monitor doesn't register anything above that level, only flashes HIGH BLOOD GLUCOSE. I had changed my insertion site that morning, but I guess the pump wasn't delivering any insulin and maybe hadn't been delivering any all day. When the insulin pump works, it works great, but when it doesn't work, it really messes things up.
I really didn't feel like eating. I was extremely weak and tired and sick to my stomach. But Michelle was hungry, and I didn't want to be a spoil sport, so I ordered a dinner salad. I picked at it a bit, then things turned from bad to worse. I felt an immanent purge coming on, grabbed a few napkins, hastily excused myself, and managed to contain most of my barf in the napkins as I rushed to the ladies' room. Michelle followed.
She asked me if she could do anything. From my compromised position, kneeling before the bowl, I managed a chuckle. "I guess you've seen worse than this in the military," I said to a woman who served in Afghanistan. She admitted that she had.
Michelle offered to take me to the ER, but I thought what I was experiencing was merely high blood sugar, which produces ketones that act as a poison to the system and can cause vomiting.
Once home, I called Mary Kay, a very dedicated, call-me-any-time-of-the-day-or-night diabetic nurse. She said it was crucial that I drink plenty of fluids and try to keep them down. I also took massive doses of insulin via a syringe because the pump was obviously not doing its job.
Still my blood sugar remained high--587. I called Tom and asked him to bring over some sugar-free ginger ale. By the time he arrived, I was so weak I could hardly move. Time to go to the ER.
I kept telling the intake nurses that I needed an IV and something to drink, but all they did was give me test after test--EKG, urine, blood pressure, temperature. Finally, after almost three hours, they gave me an IV and I began to stabilize. It was only then that I found out that, because of the elevated level of the heart enzyme troponin in my blood, I must have had a heart attack.
I stayed in the hospital until Saturday evening. Right now, I'm feeling fine. I'm able to walk and make my bed and do everything I need to do. Once again, I experienced a medical drama, but, thankfully, once again, I bounced back quickly. Another lease on life, another chance. Thanks so much to all forces and beings who are watching over me.
Wednesday, February 18, 2009
More Pleasures
Here are some more pleasures in my life. As these are also things I'm thankful for, this can also be seen as a gratitude list, incomplete, of course. A work in progress.
* sunshine, definitely sunshine
* a smile from a stranger
* black velvet gloves that feel so good and keep my hands warm
* fresh flowers--what a treat!
* blueberries
* mangoes
* a sweet, juicy orange
* good writing
* National Public Radio
* holding a pillow against my chest as if it were my lover
* rubbing my legs against flannel sheets
* a meal with The Son
* a hug from The Son
* watching "The Wire" with The Son (We've rented the entire four seasons of episodes from Netflix.)
* gazing upon my cacti collection on my back porch
* acupuncture appointments, especially the acupressure massage Dr. Mai gives me after he removes the needles
* birdsong
* being able to walk, climb stairs, do housework, and get dressed without panting, without having cardiac symptoms--the pleasure of doing simple things effortlessly
* sunshine, definitely sunshine
* a smile from a stranger
* black velvet gloves that feel so good and keep my hands warm
* fresh flowers--what a treat!
* blueberries
* mangoes
* a sweet, juicy orange
* good writing
* National Public Radio
* holding a pillow against my chest as if it were my lover
* rubbing my legs against flannel sheets
* a meal with The Son
* a hug from The Son
* watching "The Wire" with The Son (We've rented the entire four seasons of episodes from Netflix.)
* gazing upon my cacti collection on my back porch
* acupuncture appointments, especially the acupressure massage Dr. Mai gives me after he removes the needles
* birdsong
* being able to walk, climb stairs, do housework, and get dressed without panting, without having cardiac symptoms--the pleasure of doing simple things effortlessly
The Pleasure of a Cup of Tea
Even as I wrote my last post, I knew that taking a shower is hardly my only pleasure. Not by a long shot.
Right now, I'm indulging in one of my favorite things: a cup of tea, preferably Earl Grey or English breakfast. This is the latter.
It's not just the tea itself, it's the sensual pleasure of holding the cup, the heat from which warms my often-chilly hands. It's also the tent I make with my hands over the cup. I then breathe into the tea and create a mini-sauna. Ah!
All this warmth makes me feel loved. It's a cozy feeling, a deep comfort, like I'm sure it must be to share a quilt with a lover, snuggling and rubbing tootsies and noses together. I've never had this experience, but I'm sure it must be wonderful. Placing a hot cup of tea against my cheek must be something like this cozy, homey, smiling-on-a-rainy day sort of love. Until that fairy tale comes true, a good cup of tea gives me the sensation of that tender sweetness.
Right now, I'm indulging in one of my favorite things: a cup of tea, preferably Earl Grey or English breakfast. This is the latter.
It's not just the tea itself, it's the sensual pleasure of holding the cup, the heat from which warms my often-chilly hands. It's also the tent I make with my hands over the cup. I then breathe into the tea and create a mini-sauna. Ah!
All this warmth makes me feel loved. It's a cozy feeling, a deep comfort, like I'm sure it must be to share a quilt with a lover, snuggling and rubbing tootsies and noses together. I've never had this experience, but I'm sure it must be wonderful. Placing a hot cup of tea against my cheek must be something like this cozy, homey, smiling-on-a-rainy day sort of love. Until that fairy tale comes true, a good cup of tea gives me the sensation of that tender sweetness.
My First Shower in Almost Three Weeks! Yippee
Yesterday, John, my PD training nurse, gave me the go-ahead to take a shower--my first since my surgery on Jan. 30.
In the weeks since surgery, I have washed my hair while kneeling before the bath tub or dunking my head with water poured from a cooking pot over the bathroom sink. Then I've sponge-bathed the rest of my body. This has been quite time-consuming, and I have had to allow for an hour and a half to shampoo, bathe, dress, and do all the tasks associated with dialysis clean-up and record-keeping each morning. Now, thank goodness, with a shower, I'll cut some of that time and effort.
But much more than the saved time and the increased convenience of a shower is the pleasure of the experience.
Taking a shower is one of the few sensual pleasures that is left to me.
* I don't smoke, take illegal drugs, or drink alcohol.
* My diet is restricted: I must avoid sweets, processed foods, dairy products, nuts, colas, and certain fruits and vegetables.
* Now that I'm on dialysis, travel is not completely impossible, but it will certainly no longer be spontaneous. (The supply company must be informed two months in advance of a domestic trip and at least three months in advance of an overseas trip, so that supplies can be delivered to my destination. And then there's all the surgical masks, cleaning supplies, towelettes, bleached towels, clamps, and other paraphenalia that I must pack. And beyond that, I have to be fairly certain that I'm conducting dialysis in a mold-free, clean space.)
* Intimacy, romance, companionship, and love seem even farther away than they have been during the rest of my life. I'm not even sure how a man would get physically close to me with all the tubing, tape, transfer set, and insulin pump that is around my mid-section.
So, taking a shower is one of the joys that is afforded me. I am so thankful to have a daily, hot shower back in my life!
In the weeks since surgery, I have washed my hair while kneeling before the bath tub or dunking my head with water poured from a cooking pot over the bathroom sink. Then I've sponge-bathed the rest of my body. This has been quite time-consuming, and I have had to allow for an hour and a half to shampoo, bathe, dress, and do all the tasks associated with dialysis clean-up and record-keeping each morning. Now, thank goodness, with a shower, I'll cut some of that time and effort.
But much more than the saved time and the increased convenience of a shower is the pleasure of the experience.
Taking a shower is one of the few sensual pleasures that is left to me.
* I don't smoke, take illegal drugs, or drink alcohol.
* My diet is restricted: I must avoid sweets, processed foods, dairy products, nuts, colas, and certain fruits and vegetables.
* Now that I'm on dialysis, travel is not completely impossible, but it will certainly no longer be spontaneous. (The supply company must be informed two months in advance of a domestic trip and at least three months in advance of an overseas trip, so that supplies can be delivered to my destination. And then there's all the surgical masks, cleaning supplies, towelettes, bleached towels, clamps, and other paraphenalia that I must pack. And beyond that, I have to be fairly certain that I'm conducting dialysis in a mold-free, clean space.)
* Intimacy, romance, companionship, and love seem even farther away than they have been during the rest of my life. I'm not even sure how a man would get physically close to me with all the tubing, tape, transfer set, and insulin pump that is around my mid-section.
So, taking a shower is one of the joys that is afforded me. I am so thankful to have a daily, hot shower back in my life!
Monday, February 16, 2009
John Updike Heard Me Read my Poetry
John Updike died on Jan. 27. I know this is old news, being that today is already Feb. 16. But what I have to write here is very old news, some 20 years old.
Back in the mid-1980s, when I was in my heyday of performance poetry, I was a featured reader at a venue on Broadway Avenue in Long Beach. As I recall, perhaps 40 people were present.
Halfway through my impassioned reading, a tall, thin man entered and stood at the back of the room, listening intently for a few minutes, smiling, and then quietly leaving. Damn, he looked familiar! But I was concentrating on my performance, giving it my all.
After I left the stage, my fellow poet and friend Don Gross told me that John Updike had popped in.
My brush with literary genius.
Back in the mid-1980s, when I was in my heyday of performance poetry, I was a featured reader at a venue on Broadway Avenue in Long Beach. As I recall, perhaps 40 people were present.
Halfway through my impassioned reading, a tall, thin man entered and stood at the back of the room, listening intently for a few minutes, smiling, and then quietly leaving. Damn, he looked familiar! But I was concentrating on my performance, giving it my all.
After I left the stage, my fellow poet and friend Don Gross told me that John Updike had popped in.
My brush with literary genius.
Friday, February 13, 2009
More Kindness
During peritoneal dialysis (PD) training last week, I was a bit distraught because my stomach had swelled on account of surgery and I couldn't zip up any of my skirts. I quite literally had nothing to wear except an elastic-waist black velvet skirt.
I moaned about this state of affairs to Marlene, the PD social worker, and Gina, the dietician. The next day, Marlene called me into her office to show me a half dozen skirts she had weened from her closet. She had gone through her things and picked out six very nice skirts for me--one wool, the others non-clingy polyesters that didn't reveal the lines of my tubing. They were beautiful! I tried them on, and all but one looked wonderful.
Gina later pulled me aside and gave me a black skirt.
I was so touched by the generosity of these two women.
Though my stomach swelling has subsided and though I have lost a lot of water weight, much of the clothes in my closet fits tightly and so the outlines of the tubing and transfer set show through. These six skirts helped me feel pretty again and increased my confidence. Such a blessing!
I moaned about this state of affairs to Marlene, the PD social worker, and Gina, the dietician. The next day, Marlene called me into her office to show me a half dozen skirts she had weened from her closet. She had gone through her things and picked out six very nice skirts for me--one wool, the others non-clingy polyesters that didn't reveal the lines of my tubing. They were beautiful! I tried them on, and all but one looked wonderful.
Gina later pulled me aside and gave me a black skirt.
I was so touched by the generosity of these two women.
Though my stomach swelling has subsided and though I have lost a lot of water weight, much of the clothes in my closet fits tightly and so the outlines of the tubing and transfer set show through. These six skirts helped me feel pretty again and increased my confidence. Such a blessing!
Thank You, Doctors
I took this photo in late June 2006 on my month-long solo camping trip up the coast and then inland to friend Araia's place in northeastern Washington state. I had gone berry picking with her friends. Afterward I took a walk through the orchard and felt as if I had entered a magical world of dappled light.
More than any lab test or clinical marker, this photo reveals the current state of my health.
It is as if I have been walking in a dark woods for a decade, struggling with one obstacle after another, and then all of a sudden, sunlight breaks through the branches and another, incredibly lovely world appears.
The path ahead is indistinct, but infused with a delicious magic, like the rain-soaked tree I beheld this afternoon--thousands of drops twinkling in a shaft of light, like Indra's net.
I have sent this message, via a handmade card with this photo, to my nephrologist, Dr. Michael Butman, closing with "Thank you so very much for all that you have done to make this opening possible. I am deeply grateful." And I will do the same for my cardiologist, Dr. Michael Phan. Both these men have shown great kindness and concern, and have spent extra time talking to me during office visits about my misgivings. When people bad-mouth Kaiser Permanente, they obviously have not experienced the quality care that these physicians have given me.
Thursday, February 12, 2009
I Have a New Heart!
After a decade or so of varying degrees of constant chest pressure and pain, I have been totally cardiac-symptom-free since beginning dialysis. This is nothing short of a miracle, and I am ecstatic!
After years of struggling with stairs, huffing and puffing after dressing in the morning, feeling exhausted from vacuuming or walking around the block, after years of this every day, day in and day out, and through the night as well, I walked a mile today. I even passed a young man on the sidewalk, left him in the dust. Then I topped it off by climbing 10 flights of stairs with ease.
As I told nephrologist Dr. Michael Butman this afternoon, "I haven't felt this good in 10 years. Well...except for a few really fantastic kisses. But then it wouldn't be fair to hold dialysis up to those standards, would it?"
He smiled and concurred, "It's only a machine, Heidi."
After years of struggling with stairs, huffing and puffing after dressing in the morning, feeling exhausted from vacuuming or walking around the block, after years of this every day, day in and day out, and through the night as well, I walked a mile today. I even passed a young man on the sidewalk, left him in the dust. Then I topped it off by climbing 10 flights of stairs with ease.
As I told nephrologist Dr. Michael Butman this afternoon, "I haven't felt this good in 10 years. Well...except for a few really fantastic kisses. But then it wouldn't be fair to hold dialysis up to those standards, would it?"
He smiled and concurred, "It's only a machine, Heidi."
Monday, February 09, 2009
The New Meaning of "Hook Up"
Strange how the term "hook up" has taken on a whole new meaning lately. In modern parlance, it is a rather crude way of saying that one has quite literally hooked up, put one's genitalia into another human being or vice versa. Dogs clamped together in the sex act.
I am now hooked up every night. But not with a sex partner. With my dialysis machine. It pumps fluid in and out of my body for 10 hours every night. Can any man do that? Hmmmm...I doubt it.
And it is not a casual hook-up. No, indeed. It is a life-and-death embrace, the stuff of true passion. At least as I've always envisioned it. Intense passion for me--and I haven't had any intense passion for almost a decade--entails a little hint of death, a bringing of two bodies to the abyss coupled with an explosion of light. The play of darkness and light, death and life, pain and pleasure. This is the stuff of the kind of hook-up that few people, I'm sad to say, have known. This is also the stuff of what I am experiencing, hooked up to a machine that pumps clean fluids in and extracts toxins, but also takes its toll as it robs my body of protein and electrolytes.
I don't have a valentine this Valentine's Day, as I have not had one for almost 30 years. Yes, 30 years without VD flowers and affection from a man with whom I am romantically entangled. None of that this year either, unless some miracle crosses my path. But I will be hooked up. You can bet on that.
I am now hooked up every night. But not with a sex partner. With my dialysis machine. It pumps fluid in and out of my body for 10 hours every night. Can any man do that? Hmmmm...I doubt it.
And it is not a casual hook-up. No, indeed. It is a life-and-death embrace, the stuff of true passion. At least as I've always envisioned it. Intense passion for me--and I haven't had any intense passion for almost a decade--entails a little hint of death, a bringing of two bodies to the abyss coupled with an explosion of light. The play of darkness and light, death and life, pain and pleasure. This is the stuff of the kind of hook-up that few people, I'm sad to say, have known. This is also the stuff of what I am experiencing, hooked up to a machine that pumps clean fluids in and extracts toxins, but also takes its toll as it robs my body of protein and electrolytes.
I don't have a valentine this Valentine's Day, as I have not had one for almost 30 years. Yes, 30 years without VD flowers and affection from a man with whom I am romantically entangled. None of that this year either, unless some miracle crosses my path. But I will be hooked up. You can bet on that.
Saturday, February 07, 2009
One in a Million, or Close Enough
In 2010, an estimated 129,000 Americans will be in end-stage kidney disease (ESKD), receiving or in need of dialysis. Of those, less than half will be undertaking peritoneal dialysis, opting instead for the more commonly known hemodialysis.
At the Kaiser Permanente facility at which I receive care, only about 130 patients are on PD. The nurse told me that in Southern California, there are no doubt thousands of PD patients.
Thousands may sound like a lot, but not in such a populous area.
Taking the 129,000 figure above, ESKD patients make up only .04 percent of the population, figuring a total U.S. population of 304 million. PD patients probably account for no more than .01 percent of the U.S. population, so I am one in 10,000.
If you also factor in coronary heart disease, at least two heart attacks, and juvenile-onset diabetes of 37 years, we're probably getting close to one in a million.
I always wanted to be one in a million, but I sure wish it was for something other than this.
At the Kaiser Permanente facility at which I receive care, only about 130 patients are on PD. The nurse told me that in Southern California, there are no doubt thousands of PD patients.
Thousands may sound like a lot, but not in such a populous area.
Taking the 129,000 figure above, ESKD patients make up only .04 percent of the population, figuring a total U.S. population of 304 million. PD patients probably account for no more than .01 percent of the U.S. population, so I am one in 10,000.
If you also factor in coronary heart disease, at least two heart attacks, and juvenile-onset diabetes of 37 years, we're probably getting close to one in a million.
I always wanted to be one in a million, but I sure wish it was for something other than this.
There Goes my Carbon Footprint!
For as long as I can remember, I have bought most everything I own from thrift stores and yard sales, reused instead of bought new, and recycled as if my life depended on it. What's more, I have lived in the same town in which I work, thereby saving lots of gas. In short, I have had a very small carbon footprint.
Until now.
Last night I hooked myself up for dialysis for the very first time. I received emergency dialysis in the hospital this week and in the dialysis training center, but this was the first time I did all the set-up and hook-up by myself without the supervision of a medical worker.
What a sack of garbage I now will generate every day! The plastic covering on two or three dialysate bags, the bags themselves, the six lines of tubing, the infusion set, the numerous paper towels and towelettes used to clean my hands, the surgical mask, tape, and the packaging for the anti-bacterial caps that cover the head of the end of the line from my body to where it connects to the tubing. All told, a trash bag full of non-reusable medical waste. Add to that the cardboard boxes--each one holding two dialysate bags. At least these can be recycled.
Until now.
Last night I hooked myself up for dialysis for the very first time. I received emergency dialysis in the hospital this week and in the dialysis training center, but this was the first time I did all the set-up and hook-up by myself without the supervision of a medical worker.
What a sack of garbage I now will generate every day! The plastic covering on two or three dialysate bags, the bags themselves, the six lines of tubing, the infusion set, the numerous paper towels and towelettes used to clean my hands, the surgical mask, tape, and the packaging for the anti-bacterial caps that cover the head of the end of the line from my body to where it connects to the tubing. All told, a trash bag full of non-reusable medical waste. Add to that the cardboard boxes--each one holding two dialysate bags. At least these can be recycled.
Saturday, January 31, 2009
The Abdominal Muscles Do it All
In my last post, I wrote of how change brings about learning. Well, here's a case in point: If not for this surgery, I would never have appreciated all that the abdominal muscles do.
Is there any activity they are not involved in? From the pain and discomfort I'm feeling at every move, it sure doesn't seem so.
Bending, pushing, pulling, lifting, carrying, twisting, turning. reaching, steering, walking, sitting, standing, lying down, getting up, coughing, sneezing. All involve the abdominals. Even laughing, hence, the term "belly laugh."
Is there any activity they are not involved in? From the pain and discomfort I'm feeling at every move, it sure doesn't seem so.
Bending, pushing, pulling, lifting, carrying, twisting, turning. reaching, steering, walking, sitting, standing, lying down, getting up, coughing, sneezing. All involve the abdominals. Even laughing, hence, the term "belly laugh."
Nothing Wholly Good or Wholly Bad
Nothing is completely good or bad. This isn't a new concept. Certainly Buddhism has taught this for many, many centuries. It's just that this truth has been made clear to me in so many ways lately.
First off, on the way to London, I read a book about the Black Plague. "What good could come out of something that wiped out a third of Europe?" you might wonder. Well, actually some surprisingly good things resulted:
* Because the plague created a labor shortage, serfs were in a better position to bargain with landowners and thereby improved their living conditions.
* A higher percentage of men died than did women. (Wait now, that's not the good part! I'm getting to it.) Since there were fewer male heirs, women were able to inherit property. Some women became quite wealthy in the process and were known as dowagers.
* Some smart and lucky peasants were able to buy land cheaply that had either been abandoned by families decimated by the plague or that had to be sold quickly to pay mounting debts. Such upward mobility created a fledgling middle class.
* Jews, who were in many areas of plague-ridden Europe accused of poisoning wells and thereby "creating" the plague, were persecuted and killed. (No, once again, this is not the good part!) They fled these regions for Poland, whose king welcomed them. There they established a vibrant culture.
* The modern-day descendants of those who contracted the plague but survived do not develop AIDS upon exposure to the HIV virus.
So, if something as horrific as the Black Plague can result in all those positive occurrences, certainly good can result from the way my life is turning.
In the eyes of the world, and certainly in the eyes of nay-sayers and pessimists, the good does not outweigh the bad. But this is narrow thinking. If life is about change, growth, and learning, then those forces that promote change, growth, and learning are those that are beneficial. And there's nothing like hardship to shake things up, force one to mature, and jumpstart learning.
Besides, so far, the whole dialysis thing--which actually won't start for another three or four weeks--has already brought about some good:
* Aaron and I have had some heart-to-heart talks about the possibility of my death and how hard it is on him to see me, year after year, getting worse, with occasional blips of improvement, followed by crashes.
* I have learned who are my true friends, as many have not contacted me, not responded to my emails or calls. Others have been quick to offer prayers, support, and kind words.
* My ex-mother-in-law, who for most of the time I've known her, somehow never thought I was good enough, always let me know that whatever I did was wrong, is now very kind to me. She has taken care of some of my mother's remaining possessions in Wisconsin, and she and I have had very pleasant phone conversations. This turn is beautiful to see.
* And once I finally leave Cal State, something I absolutely will do at the end of this semester, will be a positive move. I just know that in my bones. Cal State has treated me so shabbily for so many years. It will be such a relief to be free of that place. And dialysis is pushing that leave-taking to the forefront.
I'm sure other good things will come of this. Of course, I hope it goes without saying that this is most definitely not the path I would have preferred. I would much prefer to be completely healthy, in a wonderful relationship, living in a stunningly beautiful place, seeing my creative ventures come to life and make me a good living, traveling the world, having a vibrant circle of friends who are nearby and accessible, and living with a loving dog, and, of course, maintaining my joyous connection with my son.
But my life is changing. And with change comes growth and learning. I have moved into the final stage of Kuebler Ross's grieving process--acceptance. I accept what is to come. What other choice really does one have? Complaining gets you nowhere, so why go there?
First off, on the way to London, I read a book about the Black Plague. "What good could come out of something that wiped out a third of Europe?" you might wonder. Well, actually some surprisingly good things resulted:
* Because the plague created a labor shortage, serfs were in a better position to bargain with landowners and thereby improved their living conditions.
* A higher percentage of men died than did women. (Wait now, that's not the good part! I'm getting to it.) Since there were fewer male heirs, women were able to inherit property. Some women became quite wealthy in the process and were known as dowagers.
* Some smart and lucky peasants were able to buy land cheaply that had either been abandoned by families decimated by the plague or that had to be sold quickly to pay mounting debts. Such upward mobility created a fledgling middle class.
* Jews, who were in many areas of plague-ridden Europe accused of poisoning wells and thereby "creating" the plague, were persecuted and killed. (No, once again, this is not the good part!) They fled these regions for Poland, whose king welcomed them. There they established a vibrant culture.
* The modern-day descendants of those who contracted the plague but survived do not develop AIDS upon exposure to the HIV virus.
So, if something as horrific as the Black Plague can result in all those positive occurrences, certainly good can result from the way my life is turning.
In the eyes of the world, and certainly in the eyes of nay-sayers and pessimists, the good does not outweigh the bad. But this is narrow thinking. If life is about change, growth, and learning, then those forces that promote change, growth, and learning are those that are beneficial. And there's nothing like hardship to shake things up, force one to mature, and jumpstart learning.
Besides, so far, the whole dialysis thing--which actually won't start for another three or four weeks--has already brought about some good:
* Aaron and I have had some heart-to-heart talks about the possibility of my death and how hard it is on him to see me, year after year, getting worse, with occasional blips of improvement, followed by crashes.
* I have learned who are my true friends, as many have not contacted me, not responded to my emails or calls. Others have been quick to offer prayers, support, and kind words.
* My ex-mother-in-law, who for most of the time I've known her, somehow never thought I was good enough, always let me know that whatever I did was wrong, is now very kind to me. She has taken care of some of my mother's remaining possessions in Wisconsin, and she and I have had very pleasant phone conversations. This turn is beautiful to see.
* And once I finally leave Cal State, something I absolutely will do at the end of this semester, will be a positive move. I just know that in my bones. Cal State has treated me so shabbily for so many years. It will be such a relief to be free of that place. And dialysis is pushing that leave-taking to the forefront.
I'm sure other good things will come of this. Of course, I hope it goes without saying that this is most definitely not the path I would have preferred. I would much prefer to be completely healthy, in a wonderful relationship, living in a stunningly beautiful place, seeing my creative ventures come to life and make me a good living, traveling the world, having a vibrant circle of friends who are nearby and accessible, and living with a loving dog, and, of course, maintaining my joyous connection with my son.
But my life is changing. And with change comes growth and learning. I have moved into the final stage of Kuebler Ross's grieving process--acceptance. I accept what is to come. What other choice really does one have? Complaining gets you nowhere, so why go there?
Trading One Malady for Another
Last night I slept the best I've slept for as long as I can remember. What a blessing! I've had a lot of really rough nights--shortness of breath, chest pain, diaphragm pain. Well, there was none of that last night. Hallelujah!
I then made an observation: Often one malady has been traded for another.
During my early childhood, for example, I had severe asthma. As soon as I was diagnosed with diabetes at age 13, the asthma disappeared.
More recently, the chest pain I have felt almost 24/7 for many years has subsided and some days I don't feel it at all. It's replacement: discomfort, aching, and stabbing pain in my diaphragm.
And the nasal congestion that has made lying prone and breathing, especially at night, very difficult for the past two months suddenly disappeared. A nurse said he was adding antibiotics to my IV yesterday. That must have been some powerful stuff because it knocked those little buggers right out of my system. Thank you, thank you, thank you for that! But of course the trade-off for that blessing is a catheter in my abdomen.
Perhaps the lesson is that nothing is wholly good or bad. There is the hint of a dark cloud in a sunny day. And always a silver lining around a cloud.
I then made an observation: Often one malady has been traded for another.
During my early childhood, for example, I had severe asthma. As soon as I was diagnosed with diabetes at age 13, the asthma disappeared.
More recently, the chest pain I have felt almost 24/7 for many years has subsided and some days I don't feel it at all. It's replacement: discomfort, aching, and stabbing pain in my diaphragm.
And the nasal congestion that has made lying prone and breathing, especially at night, very difficult for the past two months suddenly disappeared. A nurse said he was adding antibiotics to my IV yesterday. That must have been some powerful stuff because it knocked those little buggers right out of my system. Thank you, thank you, thank you for that! But of course the trade-off for that blessing is a catheter in my abdomen.
Perhaps the lesson is that nothing is wholly good or bad. There is the hint of a dark cloud in a sunny day. And always a silver lining around a cloud.
General Anesthesia Has Greatly Improved Since I Had my Tonsils Removed
Boy, has general anesthesia made some leaps and bounds in the last 44 years! I was expecting the same sort of scary experience I'd had when my tonsils were removed when I was six years old.
I remember so clearly how I saw the doctors surrounded me in the operating room, I seemed to be seeing them through viscous water. They told me to count backwards, and I began falling in a spiral down a long, dark tunnel. Creepy!
Well, that isn't how it happens today. I was wheeled into the pre-op room, and something must have been put into my IV. I fell asleep without any of the foreplay that usually accompanies sleep--no strange, dissociate thoughts and images, no feeling of drifting. No, it was simply lights out.
I awoke two and a half hours later, wondering when we were going to get this show on the road. Then my right hand rested on my abdomen, and I felt the catheter. The operation was over!
I had no recollection of being wheeled into surgery. I never saw the operating room or the surgeon or the surgical nurses. I had no sensation of the tube being put down my throat (though currently I have a sore throat). And to really confuse me, they put me back in the same bed slot in the pre-op room, which also must be the post-op room.
When people have an alien abduction is must be something like this. You go to sleep in one spot, you have a bunch of missing time and evidence that something was done to you, and then you're dropped back into your normal life.
I'm certainly NOT complaining, as this was a vastly better experience than the tonsil one. It's just that it was totally unexpected.
I remember so clearly how I saw the doctors surrounded me in the operating room, I seemed to be seeing them through viscous water. They told me to count backwards, and I began falling in a spiral down a long, dark tunnel. Creepy!
Well, that isn't how it happens today. I was wheeled into the pre-op room, and something must have been put into my IV. I fell asleep without any of the foreplay that usually accompanies sleep--no strange, dissociate thoughts and images, no feeling of drifting. No, it was simply lights out.
I awoke two and a half hours later, wondering when we were going to get this show on the road. Then my right hand rested on my abdomen, and I felt the catheter. The operation was over!
I had no recollection of being wheeled into surgery. I never saw the operating room or the surgeon or the surgical nurses. I had no sensation of the tube being put down my throat (though currently I have a sore throat). And to really confuse me, they put me back in the same bed slot in the pre-op room, which also must be the post-op room.
When people have an alien abduction is must be something like this. You go to sleep in one spot, you have a bunch of missing time and evidence that something was done to you, and then you're dropped back into your normal life.
I'm certainly NOT complaining, as this was a vastly better experience than the tonsil one. It's just that it was totally unexpected.
No Loose-Fitting Clothes--What to Do?
The night before surgery, I looked long and hard at the clothes hanging in my closet. My surgery instructions recommended that I wear loose-fitting, comfortable clothes that would not rub against the bandaging. That was a tall order as all I have are clothes that actually fit nicely about my trim frame. Suits, dresses, blouses, pants--none of them loose.
The only thing I could come up with were black scrubs. I had once worked as a massage therapist at a day spa that required workers to wear only maroon or black scrubs. After I quit, I began using them as PJs.
When Aaron saw my outfit, he quipped, "Is that how you're going to make your escape?"
He's so quick and so funny. "I don't know if that will work," I said. "The doctors wear light blue, and the nurses generally wear ones with goofy prints. Besides, when is the last time you saw a slim nurse?"
The only thing I could come up with were black scrubs. I had once worked as a massage therapist at a day spa that required workers to wear only maroon or black scrubs. After I quit, I began using them as PJs.
When Aaron saw my outfit, he quipped, "Is that how you're going to make your escape?"
He's so quick and so funny. "I don't know if that will work," I said. "The doctors wear light blue, and the nurses generally wear ones with goofy prints. Besides, when is the last time you saw a slim nurse?"
Looking Cute is so Damn Important
The dear son took me to the hospital yesterday. A few friends had volunteered, but when I found out that I had to be there by 5:45, I figured only a next of kin would be truly willing.
I'm so glad he was there. He held my hand and told me that he was always thinking good thoughts about me, praying for me. He told he loved me and that he hoped that the surgery would go well, that dialysis would help me feel better.
Best of all, he was there when they put in the IV. Oh, how I hate IVs! That is one of the prime reasons why I didn't opt for hemodialysis.
At one point, I gathered up my IV pole and headed for the bathroom. When I returned I engaged in the silly banter that is part of the mother-son bond I share with Aaron. I smiled and told him, "You know, Son, I just looked in the mirror, and I want to tell you that your mom is pretty damn cute. Even without makeup, even stressed out and feeling lousy, even without sleep the night before surgery, I still look pretty cute....And that's important!"
I'm so glad he was there. He held my hand and told me that he was always thinking good thoughts about me, praying for me. He told he loved me and that he hoped that the surgery would go well, that dialysis would help me feel better.
Best of all, he was there when they put in the IV. Oh, how I hate IVs! That is one of the prime reasons why I didn't opt for hemodialysis.
At one point, I gathered up my IV pole and headed for the bathroom. When I returned I engaged in the silly banter that is part of the mother-son bond I share with Aaron. I smiled and told him, "You know, Son, I just looked in the mirror, and I want to tell you that your mom is pretty damn cute. Even without makeup, even stressed out and feeling lousy, even without sleep the night before surgery, I still look pretty cute....And that's important!"
My Hysterical Mom
Last week I took my mom out for lunch twice. I knew I wouldn't be up to seeing her after surgery and I figured this would make up for her time alone. Instead, she pestered me about why I wouldn't be able to see her. So I did what I have promised myself not to do so many, many times in my life: I told her crucial information about my life. As always, this was a bad idea.
I said it as simply and evasively as possible: "I'm having surgery on Friday, so I won't be able to see you for a while. I'm not sure how long." What a huge mistake! I should have lied, told her I had so much work, that I'd be working nights and weekends too. But, no, I had to tell her the truth! I've never been comfortable with lies. This would have been an excellent time to perfect that skill.
These few words set off days of hysteria. I exaggerate not. Hysteria. Like a heroin addict who needs his fix. Like a psychopath on a murder spree. Hysteria.
My mother began calling 10, 12 times a day, always whining. Always saying something crazy like, "Call me back! I need to talk to you!" Or: "I'm waiting, I'm waiting for your call!" Other even more insistent, more incomprehensible stuff. Always at a frenetic pitch. She called my land line, my cell phone. She called Aaron multiple times at work. Worst of all, she called 10 times in the middle of the night before my surgery. Calls at 1:30 a.m., 1:35 a.m., 2 a.m., on and on like that, all night long. We didn't answer any of them, knowing who was making them.
And just hours before this barrage, I had talked to her, told her in no uncertain terms that I was so incredibly sorry I had said anything to her, that this had been such a stupid mistake on my part.
I could never stand her theatrics, but in the state I was in, with all that is going on and then to have a hysterical, needy, self-absorbed mother on top of it, I said, "Mom, if you were really concerned about me, you would be calm and supportive, not hysterical. Instead of aiding my health, you are working to destroy my health. Besides, you are not concerned about me. You're concerned about yourself. If I die, you wonder who will take care of you. It's about you, Mom."
And after being so clear about how she is stressing me out, what does she do? She calls 10 times in the middle of the night to make sure that I don't sleep a wink before my 5:45 a.m. surgery.
I said it as simply and evasively as possible: "I'm having surgery on Friday, so I won't be able to see you for a while. I'm not sure how long." What a huge mistake! I should have lied, told her I had so much work, that I'd be working nights and weekends too. But, no, I had to tell her the truth! I've never been comfortable with lies. This would have been an excellent time to perfect that skill.
These few words set off days of hysteria. I exaggerate not. Hysteria. Like a heroin addict who needs his fix. Like a psychopath on a murder spree. Hysteria.
My mother began calling 10, 12 times a day, always whining. Always saying something crazy like, "Call me back! I need to talk to you!" Or: "I'm waiting, I'm waiting for your call!" Other even more insistent, more incomprehensible stuff. Always at a frenetic pitch. She called my land line, my cell phone. She called Aaron multiple times at work. Worst of all, she called 10 times in the middle of the night before my surgery. Calls at 1:30 a.m., 1:35 a.m., 2 a.m., on and on like that, all night long. We didn't answer any of them, knowing who was making them.
And just hours before this barrage, I had talked to her, told her in no uncertain terms that I was so incredibly sorry I had said anything to her, that this had been such a stupid mistake on my part.
I could never stand her theatrics, but in the state I was in, with all that is going on and then to have a hysterical, needy, self-absorbed mother on top of it, I said, "Mom, if you were really concerned about me, you would be calm and supportive, not hysterical. Instead of aiding my health, you are working to destroy my health. Besides, you are not concerned about me. You're concerned about yourself. If I die, you wonder who will take care of you. It's about you, Mom."
And after being so clear about how she is stressing me out, what does she do? She calls 10 times in the middle of the night to make sure that I don't sleep a wink before my 5:45 a.m. surgery.
Thursday, January 29, 2009
Do People See Me as a Freak?
Just as I was feeling OK about the whole dialysis thing, a friend's boyfriend said that I must feel funny at work, that my co-workers must think of me as some kind of freak. And wouldn't it be better if I just removed myself from that situation and quit work, went out on disability? "I'm sure you'd rather not have them always looking at you like you're a freak," he said.
I think that, in some twisted way, he meant to offer support through his comments. The thing was I hadn't been thinking of myself as a freak, and I hadn't considered that others looked at me that way--that is, until he said this.
But maybe they do. Maybe already in their minds they have relegated me to the almost-dead category. That I am no longer worth bothering with because they think I won't be around much longer and, even if I am, do they really want to associate with someone who has to add and remove fluids from her body four times a day through a tube permanently implanted in her abdomen?
Of course, everyone adds and removes fluids from the body many times each day. But somehow doing it quick and easy over a toilet is different.
Who knows what people think. If the truth be told, I'm sure that there are plenty of people who have thought I'm a freak even without knowing anything about my medical challenges.
But I do know what I will do the next time Daryl or anyone else brings up freakiness: I'll tell him straight on that, that's not the way I think about myself.
I think that, in some twisted way, he meant to offer support through his comments. The thing was I hadn't been thinking of myself as a freak, and I hadn't considered that others looked at me that way--that is, until he said this.
But maybe they do. Maybe already in their minds they have relegated me to the almost-dead category. That I am no longer worth bothering with because they think I won't be around much longer and, even if I am, do they really want to associate with someone who has to add and remove fluids from her body four times a day through a tube permanently implanted in her abdomen?
Of course, everyone adds and removes fluids from the body many times each day. But somehow doing it quick and easy over a toilet is different.
Who knows what people think. If the truth be told, I'm sure that there are plenty of people who have thought I'm a freak even without knowing anything about my medical challenges.
But I do know what I will do the next time Daryl or anyone else brings up freakiness: I'll tell him straight on that, that's not the way I think about myself.
At This Time Tomorrow
At this time tomorrow I will have already completed surgery. I'll probably be in the recovery room by 9 a.m.
Although the heavy-duty emotions regarding dialysis have subsided--I'm no longer crying about it or waking up in the morning with my very first thought being dialysis--I still find the prospect of having a permanent catheter in my belly a bit daunting. It's as if I had been told that tomorrow I will die, even though today I'm walking about, enjoying the sunshine, acting as if tomorrow is such a long ways off.
I guess it just doesn't quite seem real yet.
I'm not looking forward to being under general anesthesia either. Only once before did I experience this--as a 6-year-old, when I had my tonsils removed. I remember so clearly the sensation of falling down a dark tunnel, not at all what I feel when I naturally drop off to sleep. I also remember the drawing I colored just before surgery--a multi-colored spiral. And I recall all the popsicles I was given afterwards.
Perhaps this time I'll have a more pleasant experience. Perhaps Archangel Michael and his minions will appear, as they did on April 1, 2000, on the other side of my back fence, in all their heavenly glory. Michael stood front and center, and around him and to a vanishing point behind him stretched God only knows how many glowing beings, the uncountable ones at the archangel's command. He was a bad-ass dude, someone you would not want to cross, someone you would want by your side, as your protector. I could see how he might draw a line in the sand with his sword and say to the devil, "This far and no farther." Not at all like the effeminate angels that are usually portrayed in art. (The image posted here is the closest I could find to how the archangel appeared to me, but even this image is a bit swishy, especially in the softness of the face.)
With dark skin or maybe just a great tan and bedecked like a gladiator without the helmet, Archangel Michael looked at me straight on, peered into my eyes and into my soul, and said, "The strength that you see within me is there inside of you." I sure could use that kind of pep talk again.
Although the heavy-duty emotions regarding dialysis have subsided--I'm no longer crying about it or waking up in the morning with my very first thought being dialysis--I still find the prospect of having a permanent catheter in my belly a bit daunting. It's as if I had been told that tomorrow I will die, even though today I'm walking about, enjoying the sunshine, acting as if tomorrow is such a long ways off.
I guess it just doesn't quite seem real yet.
I'm not looking forward to being under general anesthesia either. Only once before did I experience this--as a 6-year-old, when I had my tonsils removed. I remember so clearly the sensation of falling down a dark tunnel, not at all what I feel when I naturally drop off to sleep. I also remember the drawing I colored just before surgery--a multi-colored spiral. And I recall all the popsicles I was given afterwards.
Perhaps this time I'll have a more pleasant experience. Perhaps Archangel Michael and his minions will appear, as they did on April 1, 2000, on the other side of my back fence, in all their heavenly glory. Michael stood front and center, and around him and to a vanishing point behind him stretched God only knows how many glowing beings, the uncountable ones at the archangel's command. He was a bad-ass dude, someone you would not want to cross, someone you would want by your side, as your protector. I could see how he might draw a line in the sand with his sword and say to the devil, "This far and no farther." Not at all like the effeminate angels that are usually portrayed in art. (The image posted here is the closest I could find to how the archangel appeared to me, but even this image is a bit swishy, especially in the softness of the face.)
With dark skin or maybe just a great tan and bedecked like a gladiator without the helmet, Archangel Michael looked at me straight on, peered into my eyes and into my soul, and said, "The strength that you see within me is there inside of you." I sure could use that kind of pep talk again.
Tuesday, January 27, 2009
Feeling Lousy and Wondering What to Do About It
I continue to feel lousy. Not that I haven't felt lousy for a long, long time. Almost a decade. It's just that it gets more and more difficult to put on a strong front.
Through continuous chest pain, which I have experienced since 1999 or thereabouts, I have generally projected a positive, everything-is-fine outlook. Now with fatigue, shortness of breath, nausea, and constant pain in my entire mid-section, especially over my kidneys, it is getting harder and harder to smile and carry on as if nothing's wrong.
Today while teaching class, I was out of breath. Just from walking about the room and writing things on the board. And all this is prior to surgery!
When the surgeon asked me yesterday if I needed a note for my employer, I told him that I planned to return to work the Monday following surgery--three days afterwards. He said that most people take the entire month off. He then said something like, "There's nothing like surgery to help you understand your limitations."
I have always pushed myself, never wanting to take the easy way out, as most Americans these days are wont to do. But I just don't know how all this is going to shake up. I mean, I've only taught two class sessions--one yesterday, one today--and I'm already exhausted, ready for the semester to end. But the end is not until the end of May! Can I really muddle through?
Through continuous chest pain, which I have experienced since 1999 or thereabouts, I have generally projected a positive, everything-is-fine outlook. Now with fatigue, shortness of breath, nausea, and constant pain in my entire mid-section, especially over my kidneys, it is getting harder and harder to smile and carry on as if nothing's wrong.
Today while teaching class, I was out of breath. Just from walking about the room and writing things on the board. And all this is prior to surgery!
When the surgeon asked me yesterday if I needed a note for my employer, I told him that I planned to return to work the Monday following surgery--three days afterwards. He said that most people take the entire month off. He then said something like, "There's nothing like surgery to help you understand your limitations."
I have always pushed myself, never wanting to take the easy way out, as most Americans these days are wont to do. But I just don't know how all this is going to shake up. I mean, I've only taught two class sessions--one yesterday, one today--and I'm already exhausted, ready for the semester to end. But the end is not until the end of May! Can I really muddle through?
Sunday, January 25, 2009
What I Want to Say to the Surgeon
Tomorrow morning at 8:30 I have the pre-op appointment with the surgeon. This is what I'd like to say to him:
"Please take a good look at my cute, little belly. It's a beautiful belly. No folds of fat. No rippling cellulite. It's such a pretty, little belly. Please look at it. See how pretty it is.
"I'm asking you to go easy on it. Mangle it as little as possible. When you're done, I need to be able to look at it and say, 'Yes, some day a man will want to touch my belly, will want to rub it and say how pretty it is.'
"You need to give me some hope, some hope for the possibility, however remote, that I won't be a freak. Can you do that? Can you do that for me, please?"
*****************
I just took some digital photos of my belly, and they aren't as cute as the real thing, so I'm not going to post them.
"Please take a good look at my cute, little belly. It's a beautiful belly. No folds of fat. No rippling cellulite. It's such a pretty, little belly. Please look at it. See how pretty it is.
"I'm asking you to go easy on it. Mangle it as little as possible. When you're done, I need to be able to look at it and say, 'Yes, some day a man will want to touch my belly, will want to rub it and say how pretty it is.'
"You need to give me some hope, some hope for the possibility, however remote, that I won't be a freak. Can you do that? Can you do that for me, please?"
*****************
I just took some digital photos of my belly, and they aren't as cute as the real thing, so I'm not going to post them.
Make the Pain Go Away
I have been in pain for months. I have told the acupuncturist, the cardiologist, the nephrologist, and probably a few others about this many times. What I've basically been told is that this is the way that it is.
Sometimes it's a dull ache. Sometimes it's discomfort. Sometimes it's like knives going into my belly. Generally I say nothing and go about my business as if nothing is wrong. I smile. I make conversation. I laugh. I engage in polite conversation. Those who know the health challenges I'm facing tell me how good I look, as was the case yesterday with Susie. Or a few days ago with Tom and Daryl. Or a few weeks ago with Rachel and Matt. But I'm feeling lousy.
Today I woke up in pain, and the pain persisted all day without a let-up. It's going on 11 at night, and I've rubbed my entire mid-section with tiger balm, hoping for some relief. I sure wish it would come so that I could sleep. I have a big day ahead of me tomorrow.
Sometimes it's a dull ache. Sometimes it's discomfort. Sometimes it's like knives going into my belly. Generally I say nothing and go about my business as if nothing is wrong. I smile. I make conversation. I laugh. I engage in polite conversation. Those who know the health challenges I'm facing tell me how good I look, as was the case yesterday with Susie. Or a few days ago with Tom and Daryl. Or a few weeks ago with Rachel and Matt. But I'm feeling lousy.
Today I woke up in pain, and the pain persisted all day without a let-up. It's going on 11 at night, and I've rubbed my entire mid-section with tiger balm, hoping for some relief. I sure wish it would come so that I could sleep. I have a big day ahead of me tomorrow.
Tuesday, January 20, 2009
One of my Hopes for the New Administration
During the past eight years of the Bush administration, I have attended approximately 15 peace demonstrations and candlelight vigils for peace. During one of my first demonstations--long before we entered Iraq--I received a poster from one of the many people who hand out free posters with sticks at such events. After several moves, I no longer have the poster.
I was disturbed by the race to war against Afghanistan and, later, Iraq. I was also disturbed by our deteriorating civil liberties. I wanted to show where I stood on both counts, and so I displayed my poster in the front window of my apartment.
"War is not the answer" seemed to-the-point but also, at least to my thinking, noncontroversial. Plus, it featured the peace sign, a universal symbol of nonviolence. I had seen many more forceful messages displayed at the rallies I'd attended, messages that I felt were not in keeping with a stance of peace, but were rather derisive and too in-your-face.
And yet soon after I had placed the poster in my window, I had to call Triple A to jumpstart my van. The tow truck driver, an African-American man in his 50s, wondered if that is the message I should be sending at this time. He seemed to agree with my sentiments, but felt that I could get into trouble for expressing them.
Sure enough, a few days later, two Long Beach police officers showed up at my door. They asked if they could come in, but, thinking quick, I said that it was a nice day, that we could talk on my front porch. They asked if this were my place. Interpreting the question as, "Do you own this place?" I answered, "No."
"But you just came out the door," one of the officers said. "Yes, I live here, but I don't own the place," I clarified.
They hemmed and hawed a bit, then asked me if that were my poster. I answered that it was. Finally I asked, "Is there a problem, officers?" They reluctantly said, "No." I then asked if I were free to go. "Yes," one answered.
I walked to my van across the street and sat in it for a good 10 minutes. All that while, the officers sat in their patrol car. Finally when they left, I left too.
And so I come to one of my hopes for the new administration: that exercising one's First Amendment freedoms will no longer be a crime, will no longer put one on a subversives list, will no longer result in police intimidation. In a broader sense, I hope that the Constitution will be restored, that "free speech zones" will be a thing of the past, that the entire country will once again be a free speech zone.
Obama is off to a good start in that direction, as he will be closing Guantanamo Bay, something that I have spoken out against on many occasion and have called my senators, representatives, and president on many, many occasions. If we cannot keep people from torture, then all the talk in our Constitution about civil liberties is all wasted ink.
I was disturbed by the race to war against Afghanistan and, later, Iraq. I was also disturbed by our deteriorating civil liberties. I wanted to show where I stood on both counts, and so I displayed my poster in the front window of my apartment.
"War is not the answer" seemed to-the-point but also, at least to my thinking, noncontroversial. Plus, it featured the peace sign, a universal symbol of nonviolence. I had seen many more forceful messages displayed at the rallies I'd attended, messages that I felt were not in keeping with a stance of peace, but were rather derisive and too in-your-face.
And yet soon after I had placed the poster in my window, I had to call Triple A to jumpstart my van. The tow truck driver, an African-American man in his 50s, wondered if that is the message I should be sending at this time. He seemed to agree with my sentiments, but felt that I could get into trouble for expressing them.
Sure enough, a few days later, two Long Beach police officers showed up at my door. They asked if they could come in, but, thinking quick, I said that it was a nice day, that we could talk on my front porch. They asked if this were my place. Interpreting the question as, "Do you own this place?" I answered, "No."
"But you just came out the door," one of the officers said. "Yes, I live here, but I don't own the place," I clarified.
They hemmed and hawed a bit, then asked me if that were my poster. I answered that it was. Finally I asked, "Is there a problem, officers?" They reluctantly said, "No." I then asked if I were free to go. "Yes," one answered.
I walked to my van across the street and sat in it for a good 10 minutes. All that while, the officers sat in their patrol car. Finally when they left, I left too.
And so I come to one of my hopes for the new administration: that exercising one's First Amendment freedoms will no longer be a crime, will no longer put one on a subversives list, will no longer result in police intimidation. In a broader sense, I hope that the Constitution will be restored, that "free speech zones" will be a thing of the past, that the entire country will once again be a free speech zone.
Obama is off to a good start in that direction, as he will be closing Guantanamo Bay, something that I have spoken out against on many occasion and have called my senators, representatives, and president on many, many occasions. If we cannot keep people from torture, then all the talk in our Constitution about civil liberties is all wasted ink.
Sunday, January 18, 2009
Tears for my Cute, Little Belly
Last night I wept over my belly, remembering the last time a man had touched it.
Ken, whom I've known for almost 30 years, was in town around Christmas. I had not seen him for almost a decade. I made lunch for us at my apartment, and later we laid down. There was such an ease to being with him, something so familiar, the kinship of two beings dropped on a strange planet at birth. The sweetest moments during that time with him were those in which he rubbed my belly, telling me how much he loved doing this. (I had completely removed my insulin pump, so not even the infusion site got in the way.) This was by far the most tender thing a man has done with me for many, many years.
In less than two weeks, a catheter and tubing will be emerging from my belly. I wept, thinking, "What man will want to rub my belly then?" Actually, even if I found a man who was interested in doing so, half my cute, little belly will be taken up by this apparatus.
Ken and I made plans for me to visit him in Tucson during my spring break. Now that I will be on dialysis, I don't know if this will be possible. Plus, I have to get up the nerve to tell him. I hadn't even gotten up the nerve to tell him about the insulin pump, much less about the catheter and tubing.
It seems a bit cruel that after nine years sans Mike--my last and truly my only boyfriend--that I should finally make such a tender connection with a man, and now it will be over after a single encounter.
I expressed these fears to Aaron, who said that every relationship has to face challenges, and that if Ken cares about me, he'll want to work through this with me. Aaron is such a sweet guy, seeing things from his vantage point, of how he would negotiate the world if he were in Ken's position.
But the truth is that Ken thinks of me as one would a sunset or a mountain range, something beautiful and amazing, but not in need of any fussing. He called the morning after I saw him in December, but I have heard nothing from him since. He probably thinks, "We made plans for her visit in March. She'll be here then."
This is such a far cry from what I want in a relationship, but still it is so much more than anything I have had in the last 10, 12 years.
Perhaps in my dreams, a man will tenderly, lovingly, stroke my belly. I just hope I can recall such a dream upon waking.
**************
After I wrote the above, I left my apartment and was gone all afternoon. Upon returning home, I found two messages from Ken. He had left one on my cell and one on my land line just minutes after I had posted the above.
I told him about dialysis and about the insulin pump. He said that he will always want to rub my tummy, as much of it as I will allow him to rub. This is exactly what I needed to hear!
Ken, whom I've known for almost 30 years, was in town around Christmas. I had not seen him for almost a decade. I made lunch for us at my apartment, and later we laid down. There was such an ease to being with him, something so familiar, the kinship of two beings dropped on a strange planet at birth. The sweetest moments during that time with him were those in which he rubbed my belly, telling me how much he loved doing this. (I had completely removed my insulin pump, so not even the infusion site got in the way.) This was by far the most tender thing a man has done with me for many, many years.
In less than two weeks, a catheter and tubing will be emerging from my belly. I wept, thinking, "What man will want to rub my belly then?" Actually, even if I found a man who was interested in doing so, half my cute, little belly will be taken up by this apparatus.
Ken and I made plans for me to visit him in Tucson during my spring break. Now that I will be on dialysis, I don't know if this will be possible. Plus, I have to get up the nerve to tell him. I hadn't even gotten up the nerve to tell him about the insulin pump, much less about the catheter and tubing.
It seems a bit cruel that after nine years sans Mike--my last and truly my only boyfriend--that I should finally make such a tender connection with a man, and now it will be over after a single encounter.
I expressed these fears to Aaron, who said that every relationship has to face challenges, and that if Ken cares about me, he'll want to work through this with me. Aaron is such a sweet guy, seeing things from his vantage point, of how he would negotiate the world if he were in Ken's position.
But the truth is that Ken thinks of me as one would a sunset or a mountain range, something beautiful and amazing, but not in need of any fussing. He called the morning after I saw him in December, but I have heard nothing from him since. He probably thinks, "We made plans for her visit in March. She'll be here then."
This is such a far cry from what I want in a relationship, but still it is so much more than anything I have had in the last 10, 12 years.
Perhaps in my dreams, a man will tenderly, lovingly, stroke my belly. I just hope I can recall such a dream upon waking.
**************
After I wrote the above, I left my apartment and was gone all afternoon. Upon returning home, I found two messages from Ken. He had left one on my cell and one on my land line just minutes after I had posted the above.
I told him about dialysis and about the insulin pump. He said that he will always want to rub my tummy, as much of it as I will allow him to rub. This is exactly what I needed to hear!
Saturday, January 17, 2009
More Kudos for Socialized Medicine
I went into the emergency room at St. Mary's Hospital in central London at 8 p.m. on Sunday. The British health care system has a mandate that no more than four hours can pass between the time a patient enters ER and is treated. And so the disparities between the American system and socialized medicine were revealed.
During my two-day stay at St. Mary's, I was continually impressed by the level of care I received. First off, everyone from the ER staff to the ward nurses to the team of doctors assigned to my case seemed to be genuinely enjoying being there. Everyone was happy, even playful. I attribute this to a different focus, not profits and cost controls as in the American system, but doing whatever is in the best interest of the patient. As the cheery Dr. Joe Lewis (he told me his mother did not name him after the fighter) said, "I don't even think about those things. I am just interested in giving the patient the best care." What a concept! And surely health practitioners who are focused on the reason they entered the profession--maintaining and restoring health--are going to be much happier than their American colleagues who are under the gun to reduce costs.
Because I am a kidney patient with complicating factors--diabetes, heart disease--I was given special care. Not only did an in-house team of a half dozen doctors monitor my case, but two nephrologists from a nearby kidney-specific hospital oversaw my care and made visits.
I was given a private room in the oncology ward because it was the last bed that was available in the hospital. This was the quietest, most relaxing experience I have ever had in a hospital--by far!
On the wall was a notice that oncology patients could receive complimentary reiki, acupuncture, massage, and reflexology. This is due to Prince Charles, who made a push to combine conventional medicine with alternative, or complimentary, practices. We are so far behind as far as that goes in the States!
Lastly--and this is a big one for me--the place was clean. Every corner appeared to be disinfected and dirt-free. The cleaning lady spent 20 minutes or more each day cleaning my room. Yes, the building itself was old, perhaps 100 years old or more. There were dings at every corner and even large gouges in the walls. But the place was clean. Women were not allowed to wear dangly earrings, and no one could wear a wrist watch--thereby denying germs a place to attach. This was so wonderful to see, as I have had such awful hospital experiences in the States--blood and feces and pills and syringes on the floor. Yikes!
So now I have been in the hospital in three socialist countries--China, Canada, and the UK. All have been much more positive experiences than I have ever had in the United States. I don't understand why socialized medicine gets such a bad rap, as I have had only positive experiences.
Thursday, January 15, 2009
I Need to See an Actor!
On Sunday night, I couldn't take it anymore. I was exhausted and nauseous, having difficulty breathing and walking.
I told the front desk clerk at the hotel, "I need to see a doctor." As happened several times during our London trip, the clerk heard something other than what I had said. She replied, "Yes, ma'am, what kind of theater are you interested in?" Thinking that perhaps the city is divided into buroughs known as theaters, I said, "Yes, I need to see a doctor. How do I go about doing that? I'm interested in whatever is closest." Again she said something about theaters. Finally I was clued in and said "doctor" very slowly.
How eccentric to say, "I need to see an actor!" Well, I suppose if one really needed to see an actor, London would be the place to do it.
I told the front desk clerk at the hotel, "I need to see a doctor." As happened several times during our London trip, the clerk heard something other than what I had said. She replied, "Yes, ma'am, what kind of theater are you interested in?" Thinking that perhaps the city is divided into buroughs known as theaters, I said, "Yes, I need to see a doctor. How do I go about doing that? I'm interested in whatever is closest." Again she said something about theaters. Finally I was clued in and said "doctor" very slowly.
How eccentric to say, "I need to see an actor!" Well, I suppose if one really needed to see an actor, London would be the place to do it.
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