If you didn't read my previous post about "Four Arguments for the Elimination of Television," you must read that first to get some context.
One of many, many things about Jerry Mander's book that I found fascinating was a thought experiment he asks readers to take in order to prove that TV images are more powerful than those from the reader's actual experience. I'll give a shortened version of it here.
Bring each of these to mind:
* China
* Africa
* Borneo
* ancient Rome
* a Russian village
* Ben Franklin
* the Old West
* the FBI
* the Old South
* an American farm family
* the Crusades
* the war room at the Pentagon
* a preoperation conference of doctors
* dope smugglers
* the landing of the Pilgrims
* a Stone Age tribe
"Were you able to come up with images for any or all of them? It is extremely unlikely that you have experienced more than two or three of them personally. (Well, I count four.) Obviously the images wer either out of your own imagination or else they were from the media."
"Now let's go a step further.
"Please bring to mind a baseball game or football game. Have you got one? Hold it for a moment.
"If you are like most Americans, you have actually been to a game. You have seen one directly and probably participated in one personally. You have probably also watched at least one of them on television. Here's the question: Which one did you bring to mind? The television version or the one you experienced directly?"
(As I have only been to a half dozen or so games and have never seen a game on TV except in passing through the room in which one was being viewed, I am probably an exception to this confusion. I actually can tell the real games from the TV ones. But I bet this is not the case with most Americans.)
Mander then speaks about an experience that resonates more strongly with me. He asks if you have ever read a book before you've seen the movie. Of course. You make images in your mind as you're reading the book of the characters and the setting. But once you see the movie, you cannot recall the images you created. The movie images have usurped your own.
Mander writes, "Once images are inside your head, the mind doesn't really distinguish between the image that was gathered directly and the one that derived from television." YIKES!
"We are left with a very bizarre phenomenon. Television is capbable of dominating personally derived imagery--from books or imagination--and it is also capable, at least some of the time, of causing confusion as to what is real experience and what is television experience. The mind is very democratic about its image banks, all are equally available for our recall and use. And so when we call on our images for whatever purposes we may have for them, we are as likely to produce an implanted image as one which was originally our own.
"The root of this unfortunate problem lies with the fact that until very recently, human beings had no need to make distinctions between artificial images of distant events and life directly lived."
Mander makes quick business of the person who thinks she is too sophisticated or too savvy or too smart to be fooled by TV, the person who says, "I know the difference between reality and TV." Mander says that we're not discussing facts here, we're talking about images. Your mind may be able to tell fact from fiction, but it treats all images the same.
Monday, November 15, 2010
Revolutionary Book--And it's 33 Years Old!
I finally got around to reading a book that has been sitting on my shelf for years: Jerry Mander's "Four Arguments for the Elimination of Television." It discusses radical ideas that you've never heard before because, well, they couldn't be discussed on TV.
Written by a former ad exec who started the first ad firm to cater to nonprofits, Mander wrote a formidable tome, pulbished in 1977. It is sweeping, going far beyond TV, into the basic building blocks of our modern society. For example, Mander writes of how the modern person doubts her experience, her intuition, her feelings. She looks to "experts" to tell her such things as "Mother's milk is good for babies" or "Stay healthy by eating fresh fruits and vegetables." These are things that our experience should tell us, but we need experts to give us cues.
He also writes of the modern world as a sensory-deprived environment. Instead of walking through forests that are teeming with diversity in terms of color, light, shape, form, speed, and size, we whiz by at high speeds down uniform-looking freeways and spend our days under artificial light in white-walled offices that are generally devoid of variations in sound and highly routine.
All of this fits in well with TV, which is also a sensory-deprivation experience. TV must be viewed in a dark or darkened room, otherwise it can't be seen. It is only concerned with the auditory and the visual, but both of these are distorted from everyday life. For example, on TV we can hear the whispered conversation of a couple standing on a distant hill. Time and space are also distorted, as the events we're seeing are not occurring now or here, but somewhere else at some other time.
The book deals with so many facets of the TV experience. It's impossible to do justice to this book. Mander explains why hyperactivity is promoted by TV-watching. Children--and adults--see exciting, threatening, scary things on TV and their bodies are compelled to act, but no action is possible. (We can't hit the bad guy or run away from the rapist or put a stake through the vampire's heart.) The watcher is forever in a state of wanting to act but being unable to do anything. This frustrated action is at the ground of hyperactivity.
Mander spends a great deal of time discussing the plight of indigenous people as portrayed on TV. Whereas the people themselves want to convey a feeling for their land and their way of life and their spiritual awareness of their environment, that is not possible to convey on TV. That takes time, a lot of time, and it takes direct experience. Land-use issues are reduced to legal battles and justice and discrimination, when in fact, the indigenous people see it in much more intimate, creative, encompassing, interconnected terms.
The same is true of environmental/nature programs. Mander finally came to see, with his nonprofit ad clients, that they should avoid TV. The more they attempted to show the beauty and the wonder of the places they were attempting to save from destruction, the more the public felt these lands were expendable. Unless you have walked in a redwood forest and felt the stillness and the wonder down to your very bones, you do not understand what a redwood forest is. If you have just seen redwoods on a tiny TV screen, without the smells, sounds, and sensuality of a forest, you are most likely to concur with Ronald Reagan, who said, "If you've seen one redwood, you've seen them all." Given a TV experience of redwoods, it's much easier to side with economic development and jobs.
What Mander discovered is that death is more effective on TV than life. So instead of showing footage of gorgeous redwoods, he began producing commercials of stump forests. I remember these commercials so clearly. They were shocking. And I vividly recall when I was camping at Kings Canyon National Park and took a bunch of dirt roads to see where I'd end up. I ended up in a stump forest. It was horrifying to be driving through such beauty and splendor and then to turn a corner and see the slaughter of hundreds upon hundreds of redwoods. It was as if nature itself had been killed.
Mander discusses the mediated environment--how people rely on TV for their experiences, their feeling fixes, their guidelines on how to act with other people. And then how eventually we turn into the people on TV.
The bottom line is YOU MUST READ THIS BOOK. If you are a teacher, I implore you to incorporate it into your class. You could easily spend an entire semester discussing it. It would be perfect for a college class in journalism, communication, psychology, pop culture, American studies, political science, philosophy, and of course, advertising.
This book is just too good not to read it. You will continually sigh "Oh, wow" and pull your friend or family member aside and read something aloud to him or her.
Thursday, November 11, 2010
Surprised I'm Alive
Yesterday I saw an orthopedic surgeon for a follow-up appointment for the hip socket I broke in March. Every step I take I can feel something poking me. This is especially acute when ascending stairs. Dr. Velasquez said swimming would be the best thing for my leg, but I can't swim with peritoneal dialysis. Too great of a possibility of infection. So he recommended physical therapy, which I'll begin again in a few weeks.
As Dr. Velasquez was looking at my records, he commented that I've been through a lot. Yessir. Type 1 diabetes, hypertension, surgery for a detached retina, cataract surgery, surgery to correct a hemorrhage in my eye, a dozen bouts of laser surgery to stop eye hemorrhaging, stent surgery, triple-bypass surgery, dialysis, broken hip socket. And all the accompanying paramedic visits and hospitalizations. He called me "a brave lady," then said it's a wonder I'm still here.
It's a wonder to me too. I am so weak and worn-out most days that I just don't know as if I can take the next step. Doing the laundry, as I did today, is such a chore. Carrying the full laundry basket, bending over to sort or pick up clothes, and reaching to hang clothes are arduous tasks for me. Yesterday I gave two massages, and that was about at the upper limit of the my physical cababilities. Working in the community garden really wipes me out. Often walking to the end of the block and back is more than I can do. Every morning when I awake, I am a bit gigglish that I've kept death at bay for another day. The bottom line is that I could really use a kidney.
I read in the local paper about a nonprofit called Cleaning for a Reason. At first I thought they might be able to help me do the housework I need to do. Then I saw that they work only with breast cancer patients. I'll just have to plug on, as I did following bypass surgery, doing more than I feel comfortable doing because it's got to get done.
I realize that my recovery from heart surgery was protracted because I was doing more than I should have done. Had I rested and slept, I probably would have been back to normal within a week or two, but as it was, it took upwards of two months.
My hope is that, should I receive a kidney in the next few weeks, my friends will help out afterwards. They might have trouble believing that someone who is only 52 and looks as good as I do struggles with simple tasks. They may think that when I've asked for help, I'm really not serious. Whatever have been the reasons in the past, I am envisioning assistance and support following surgery so that I can enjoy a speedy recovery. Well, and of course to enjoy the presence of friends, not their email presences but their flesh-and-blood presences.
But to have a recovery, first I need surgery. ASAP.
As Dr. Velasquez was looking at my records, he commented that I've been through a lot. Yessir. Type 1 diabetes, hypertension, surgery for a detached retina, cataract surgery, surgery to correct a hemorrhage in my eye, a dozen bouts of laser surgery to stop eye hemorrhaging, stent surgery, triple-bypass surgery, dialysis, broken hip socket. And all the accompanying paramedic visits and hospitalizations. He called me "a brave lady," then said it's a wonder I'm still here.
It's a wonder to me too. I am so weak and worn-out most days that I just don't know as if I can take the next step. Doing the laundry, as I did today, is such a chore. Carrying the full laundry basket, bending over to sort or pick up clothes, and reaching to hang clothes are arduous tasks for me. Yesterday I gave two massages, and that was about at the upper limit of the my physical cababilities. Working in the community garden really wipes me out. Often walking to the end of the block and back is more than I can do. Every morning when I awake, I am a bit gigglish that I've kept death at bay for another day. The bottom line is that I could really use a kidney.
I read in the local paper about a nonprofit called Cleaning for a Reason. At first I thought they might be able to help me do the housework I need to do. Then I saw that they work only with breast cancer patients. I'll just have to plug on, as I did following bypass surgery, doing more than I feel comfortable doing because it's got to get done.
I realize that my recovery from heart surgery was protracted because I was doing more than I should have done. Had I rested and slept, I probably would have been back to normal within a week or two, but as it was, it took upwards of two months.
My hope is that, should I receive a kidney in the next few weeks, my friends will help out afterwards. They might have trouble believing that someone who is only 52 and looks as good as I do struggles with simple tasks. They may think that when I've asked for help, I'm really not serious. Whatever have been the reasons in the past, I am envisioning assistance and support following surgery so that I can enjoy a speedy recovery. Well, and of course to enjoy the presence of friends, not their email presences but their flesh-and-blood presences.
But to have a recovery, first I need surgery. ASAP.
Tuesday, November 09, 2010
Cindy and I Meet
Cindy, my potential donor, was in town this weekend for a cousin's baby shower, so we met for breakfast. This was our first face-to-face meeting. So good to spend two hours or so talking about things other than kidneys.We still don't know if she is a match, but we should know soon.
Friday, November 05, 2010
Friends Who Don't Return Calls
What is it that causes friends to just stop returning calls and emails? During this past year alone, I have seen this happen with two people who I have long considered among my top five friends. Let's call one Tina and the other John.I've known Tina for about seven years and John for almost 21. Whenever we've gotten together, we always have a really good time. At least it sure seems like that from my perspective. As with most friends throughout my life, it is up to me to call first and suggest a venue or event, though Tina would often secure free tickets and invite me.
I have not seen Tina since late January, and the last I saw of John was shortly after that. I have called and left messages several times for each of them. I have sent group emails and personal emails about a dozen times to both. No response, save for John telling me that he had a cold and so couldn't call me. That reminds me of the "I have to wash my hair" excuse for not accepting a date.
What is it about our world that we can just drop people like that? Without parting words. Without reason. At least no reasons that are stated. What is wrong with us as a society that we can just cut connections with a friend of even two decades' standing as easily as we can neglect to answer an email from a potential suitor on an online dating site?
Though I have received many, many such messages over the years that Southern California is not a good fit for me, perhaps this is just one more. Granted, our entire country and our entire world are fast becoming as disconnected and superficial as So Cal, but So Cal has always been the epicenter.
Thursday, November 04, 2010
Hiding my "Yuk"
Yesterday I had one of those insensitive-healthy-people experiences while receiving a service from a 250- to 300-pound woman, let's call her Debbie. She's a sweet gal, but she doesn't know anything about dialysis, as is the case with most people. She didn't know the difference between hemodialysis and peritoneal dialysis, the latter of which I do. When I said that PD necessitates a tube issuing from my abdomen, Debbie made a face and groaned an exaggerated "YUK."
I should have said something then and there, but I didn't. It was a teaching moment. Already several men have rejected me because of dialysis. One of my very best friends said that she wouldn't want to be intimate with someone on dialysis.Another friend's boyfriend said that dialysis made me a "freak." And here is Debbie, reinforcing this rejection.
Granted, she probably thought nothing of her comment, just as people who are in long-term relationships think nothing of giggling and making light of others being without a partner, without even a date.
I wonder what the psychological mechanism of this is. Is that people think that by laughing at another's pain they distance themselves from it? That in this way they perform a ritual to keep sickness and loneliness from ever touching them? I can't answer this because it's not been my response. My heart has always gone out to people who have been dealt a difficult hand, though I have very little sympathy for people who bring difficulties on themselves. But I certainly don't laugh at them!
Interesting, too, that Debbie is showing her "yuk" to the world all the time in the form of her excess weight, whereas I at least am hiding my "yuk" under my clothes.
I should have said something then and there, but I didn't. It was a teaching moment. Already several men have rejected me because of dialysis. One of my very best friends said that she wouldn't want to be intimate with someone on dialysis.Another friend's boyfriend said that dialysis made me a "freak." And here is Debbie, reinforcing this rejection.
Granted, she probably thought nothing of her comment, just as people who are in long-term relationships think nothing of giggling and making light of others being without a partner, without even a date.
I wonder what the psychological mechanism of this is. Is that people think that by laughing at another's pain they distance themselves from it? That in this way they perform a ritual to keep sickness and loneliness from ever touching them? I can't answer this because it's not been my response. My heart has always gone out to people who have been dealt a difficult hand, though I have very little sympathy for people who bring difficulties on themselves. But I certainly don't laugh at them!
Interesting, too, that Debbie is showing her "yuk" to the world all the time in the form of her excess weight, whereas I at least am hiding my "yuk" under my clothes.
Saturday, October 30, 2010
The Cold That Won't Quit
Ever since returning from France in June, I have had a cold. The symptoms change--sometimes phlegm that can be expelled, mostly phlegm that's stuck in my throat and chest, sometimes a ticklish nose and a lot of sneezing, sometimes a bunch of coughing. But it never goes away.
I saw Dr. Mai, my acupuncturist, yesterday, and he said I have to take care of this or it will turn into chronic bronchitis or asthma. Well, I'm certainly ready to be rid of it.
I have been tired and weak for the last month or so. Perhaps the cold is really dragging me down.
I saw Dr. Mai, my acupuncturist, yesterday, and he said I have to take care of this or it will turn into chronic bronchitis or asthma. Well, I'm certainly ready to be rid of it.
I have been tired and weak for the last month or so. Perhaps the cold is really dragging me down.
Thursday, October 28, 2010
Kuehl Family Reunion, 1987
Not this coming weekend but the next is the Kuehl family reunion. For many years now, it has been held on the first Saturday of November. Whereas during my childhood and my son's early childhood, the reunion was a picnic held in a Trimont, Minn., park, these days it's a foeden-making party. Foeden are donut-like treats made in a special skillet.
The following is an essay I wrote in 1987 and hoped to publish. It has waited in my document files until now to see the light of day. I am in the process of sorting through all my writing and separating the wheat from the chaff. This piece is part travel story of the small towns of southern Wisconsin and Minnesota, and part philosophical musings on the nature of family, connection to the land, and traditions.
Taking the Long Way Home
Over the Back Roads of Wisconsin and Minnesota
As a young child, the drive to Ormsby, Minnesota, had seemed endless to me, and so I could hardly blame my 14-month-old son for squirming in his car seat and occasionally wiggling his way out when we made the trip with my mother this past summer. At the end of our journey, relatives waited for us and for the Kuehl family reunion, an annual tradition that my mother had tried to make every year when my brother and I were children. Now that she has a grandchild, she feels the pull of time all the more strongly, and so seeing her "people," as she calls her sisters, is becoming more and more important.
I sat in the back seat with Aaron while my mother drove. Mine was the more rigorous detail. Keeping Aaron entertained for two days--five hundred miles--of driving was no easy task, but I quieted his cries and forestalled his screams with my shopping bag full of tricks: picture books of doggies and duckies, a yellow play phone for calling Daddy, a hedgehog hand puppet in a red bandana, Aaron's favorite teddy and, when all else failed, Goldfish crackers I fed him slowly, never more than one per mile.
It was a cool and drizzly June morning when three generations of Kuehl started out for the homestead in southwestern Minnesota, driving west from Racine via Highway 20. At Rochester, what must be one of southeastern Wisconsin's most picturesque towns, we turned north onto 83, on which we passed fences and barns of Kettle Moraine field stone, rain-sprinkled pastures and cows lazily grazing under overcast skies.
We stopped for mid-morning coffee and the best homemade poppyseed cake I'd ever tasted at the family-run Genessee Depot in the town by the same name. Dressed in blue-and-white-striped apron and hat, "Grandma" brought us mugs of hot coffee while her seven-year-old grandson took our order and my mother talked with the boy's father about Alfred Lunt and Lynn Fontanne, the Broadway stars who adored the Wisconsin countryside and built their estate outside of town.
At Wales we again turned west, this time on 18, which took us all the way to Madison. Before we reached the capital and what was to be the most congested leg of our journey, we stopped in Dousman, just long enough for me to photograph an unusual building at the side of the road--a barn or a storage shed, I wasn't sure which--painted a soft peach with white filigree woodwork along the eaves that made me think of a cake with elaborate icing.
When I had made this trip with my parents and brother, we had always taken 12 out of Madison, and farther on, 16, highways which have now been all but rendered obsolete for interstate travelers by I-90, which closely parallels them for many of their miles. This summer, however, we opted for a different path--14 and its meanderings through Black Earth, Mazomanie, and after it crosses the Wisconsin River, Spring Green, where we stopped at a roadside park for a picnic lunch. Huddling beneath an open shelter, my mother and I ate the Cornish hens I'd prepared the night before while Aaron played with the hand-pumped drinking fountain.
The skies began to clear in the afternoon as we headed north on 14 through Gotham, Richland Center and Readstown, and by the time we reached Viroqua, we had rolled down our windows for a chance at a cool breeze. Instead of continuing on 14 to La Crosse, I convinced my mother to head west out of Viroqua on 56. She said she had never taken this stretch of road before, and the mere three cars we saw along the 20 miles to the Mississippi River town of Genoa were evidence that not many others had either.
In sleepy Genoa we turned north on 35, a lovely road that made me wish we had more time to take 35 south along the river banks to Praire du Chien and then back north again to La Crosse, our motel stop for the night.
After a McDonald's breakfast the next morning, we crossed the Mississippi. I attempted to focus Aaron's attention on the river, so he could share in my excitement, but all he was interested in were the trucks on the bridge and the teddy in his arms. It was a perfect day for traveling--sunny but not hot, blue sky with plump clouds, not too muggy.
Our first hours were spent in the hill country of southeastern Minnesota, much of which is state park and forest lands. The few small towns along 16 are snuggled beside the Root River, which does much to give Hokah, Rushford and Lanesboro a sense of timeless peace. We detoured at Peterson and Whalen, the two smallest burgs. Located over an old bridge that crosses the Root, Peterson's only inhabitant appeared to be a lone dog. The shops were all closed, and looked as if they had been for some time. The houses didn't appear abandoned, yet there was no one around. We drove to the highest point in town, a steepled church. It was for sale.
Whalen appeared more optimistic, though not much livelier. A gift shop had tried to survive on Main Street, and failed. A grocery store was in the process of shutting down. But the town had a park with two picnic tables and a gazebo, and the historical society maintained a museum, which was closed when we were there. I left the hill country thinking how sad it is that the most beautiful places are usually the ones where it's so difficult to make a living.
At Preston the terrain abruptly turned flat; the vegetation changed from forests to farmers' fields. At Grand Meadow we attempted to piece together a path over county roads, but kept getting turned around, passing through Rose Creek three times before giving up and, reluctantly, joining with I-90. The long, monotonous miles of cornfields prompted my comment: "I bet a lot of farm kids look at this freeway and think, 'That road's my ticket out of here.'"
Just west of Welcome, we left the interstate and drove eight miles north on Minnesota 4 to the first settlement of Trimont. Over the years, my aunts and uncles had left Ormsby, where my Grandma Kuehl had lived until her death in 1965: Gilma, Dorothy and Viola now resided in Trimont; Bernita, in St. James.
We had supper that evening at Aunt Gilma's: pork chops, green-beans-and-Velveta casserole, jello salad with a dollop of Miracle Whip. After the dishes were done, I put Aaron in his stroller and walked along the deserted main street, past the cafe where retired farmers, like my uncle Bill, went to shoot the breeze about the price of corn.
I pushed the stroller to the very edge of town. Strange, but this town really did have an edge. Next to the implement shop, just beyond the railroad tracks, Trimont ended and fields of soybeans, lavender and pinkish in the last rays of sunlight, began.
I thought of all the cities and towns I have known in which the residents were strangers, and of my son who has logged more jet time than most of his Minnesota uncles and aunts have accrued in their lifetimes. Aaron has flown from Los Angeles to Milwaukee for two Christmases, two weddings and one family reunion. He's traveled the West Coast in his parents’ van, his first camping trip when he was not yet three months old.
The long-awaited family reunion took place on Saturday afternoon at the shelter in one of Trimont's two parks. Aaron wasn't yet walking, but I set him down as soon as we got there and didn't pick him up again until we left six hours later. He had plenty of great aunts who were more than willing to fuss over him, and he was pleased to explore on his own, getting dirtier than my cousin Nick's 1000-pound sows.
I hadn't been to a family reunion in nine years, when my husband and I had driven out from Chicago, where we lived before moving to California. Cousins I had remembered as delightful preschoolers were now in junior high, and those who had been fixed in my memory as insecure teenagers had become lawyers, small business-owners, middle managers and teachers in my absence. My cousin Heidi is a now wildlife biologist for the Minneapolis Zoo.
As I now put maps of Wisconsin and Minnesota in Aaron's baby book and mark our route in yellow felt pen, I think of my aunts and uncles in rural Minnesota, who, almost without exception, have never traveled abroad, indeed many rarely leave their immediate area. A shopping excursion to Minneapolis, a little over two hours away by freeway, is a major trip. I thought of L.A., where I now live, and how one city rubs right up against the next with only a sign to let you know you've left one for another.
Even the surrounding areas are not familiar. I had asked my Aunt Dorothy what she knew of Swastika Beach, a town less than 20 miles from her home in Trimont. "How did it get that name?" I wondered. She'd said she'd never heard of the place, yet, in over 70 years, she's never lived more than 50 miles away. "There are so many little settlements no one ever hears about," she had answered. "You only know the towns where someone you know lives."
I think of the traveling my son will do in his lifetime, the people he'll meet and befriend in far-off places and the towns he'll know even though he knows no one in them. I have only two wishes for my young traveler: that he'll also want to "know his roots," as his grandmother would say--the Kuehls who will wait for him every summer at family-reunion time in places like Ormsby, Trimont, St. James and Alpha; and that maybe someday he and I will both discover what goes on in Swastika Beach. Until then, youngest cousin Vonn and best-looking cousins Nick and Neal will continue to farm the rich black earth that provided a livelihood for my grandparents, Reinhold and Augusta, and so assured that their children would grow to adulthood and have children of their own, who would gather together for family reunions like this one
The following is an essay I wrote in 1987 and hoped to publish. It has waited in my document files until now to see the light of day. I am in the process of sorting through all my writing and separating the wheat from the chaff. This piece is part travel story of the small towns of southern Wisconsin and Minnesota, and part philosophical musings on the nature of family, connection to the land, and traditions.
Taking the Long Way Home
Over the Back Roads of Wisconsin and Minnesota
As a young child, the drive to Ormsby, Minnesota, had seemed endless to me, and so I could hardly blame my 14-month-old son for squirming in his car seat and occasionally wiggling his way out when we made the trip with my mother this past summer. At the end of our journey, relatives waited for us and for the Kuehl family reunion, an annual tradition that my mother had tried to make every year when my brother and I were children. Now that she has a grandchild, she feels the pull of time all the more strongly, and so seeing her "people," as she calls her sisters, is becoming more and more important.
I sat in the back seat with Aaron while my mother drove. Mine was the more rigorous detail. Keeping Aaron entertained for two days--five hundred miles--of driving was no easy task, but I quieted his cries and forestalled his screams with my shopping bag full of tricks: picture books of doggies and duckies, a yellow play phone for calling Daddy, a hedgehog hand puppet in a red bandana, Aaron's favorite teddy and, when all else failed, Goldfish crackers I fed him slowly, never more than one per mile.
It was a cool and drizzly June morning when three generations of Kuehl started out for the homestead in southwestern Minnesota, driving west from Racine via Highway 20. At Rochester, what must be one of southeastern Wisconsin's most picturesque towns, we turned north onto 83, on which we passed fences and barns of Kettle Moraine field stone, rain-sprinkled pastures and cows lazily grazing under overcast skies.
We stopped for mid-morning coffee and the best homemade poppyseed cake I'd ever tasted at the family-run Genessee Depot in the town by the same name. Dressed in blue-and-white-striped apron and hat, "Grandma" brought us mugs of hot coffee while her seven-year-old grandson took our order and my mother talked with the boy's father about Alfred Lunt and Lynn Fontanne, the Broadway stars who adored the Wisconsin countryside and built their estate outside of town.
At Wales we again turned west, this time on 18, which took us all the way to Madison. Before we reached the capital and what was to be the most congested leg of our journey, we stopped in Dousman, just long enough for me to photograph an unusual building at the side of the road--a barn or a storage shed, I wasn't sure which--painted a soft peach with white filigree woodwork along the eaves that made me think of a cake with elaborate icing.
When I had made this trip with my parents and brother, we had always taken 12 out of Madison, and farther on, 16, highways which have now been all but rendered obsolete for interstate travelers by I-90, which closely parallels them for many of their miles. This summer, however, we opted for a different path--14 and its meanderings through Black Earth, Mazomanie, and after it crosses the Wisconsin River, Spring Green, where we stopped at a roadside park for a picnic lunch. Huddling beneath an open shelter, my mother and I ate the Cornish hens I'd prepared the night before while Aaron played with the hand-pumped drinking fountain.
The skies began to clear in the afternoon as we headed north on 14 through Gotham, Richland Center and Readstown, and by the time we reached Viroqua, we had rolled down our windows for a chance at a cool breeze. Instead of continuing on 14 to La Crosse, I convinced my mother to head west out of Viroqua on 56. She said she had never taken this stretch of road before, and the mere three cars we saw along the 20 miles to the Mississippi River town of Genoa were evidence that not many others had either.
In sleepy Genoa we turned north on 35, a lovely road that made me wish we had more time to take 35 south along the river banks to Praire du Chien and then back north again to La Crosse, our motel stop for the night.
After a McDonald's breakfast the next morning, we crossed the Mississippi. I attempted to focus Aaron's attention on the river, so he could share in my excitement, but all he was interested in were the trucks on the bridge and the teddy in his arms. It was a perfect day for traveling--sunny but not hot, blue sky with plump clouds, not too muggy.
Our first hours were spent in the hill country of southeastern Minnesota, much of which is state park and forest lands. The few small towns along 16 are snuggled beside the Root River, which does much to give Hokah, Rushford and Lanesboro a sense of timeless peace. We detoured at Peterson and Whalen, the two smallest burgs. Located over an old bridge that crosses the Root, Peterson's only inhabitant appeared to be a lone dog. The shops were all closed, and looked as if they had been for some time. The houses didn't appear abandoned, yet there was no one around. We drove to the highest point in town, a steepled church. It was for sale.
Whalen appeared more optimistic, though not much livelier. A gift shop had tried to survive on Main Street, and failed. A grocery store was in the process of shutting down. But the town had a park with two picnic tables and a gazebo, and the historical society maintained a museum, which was closed when we were there. I left the hill country thinking how sad it is that the most beautiful places are usually the ones where it's so difficult to make a living.
At Preston the terrain abruptly turned flat; the vegetation changed from forests to farmers' fields. At Grand Meadow we attempted to piece together a path over county roads, but kept getting turned around, passing through Rose Creek three times before giving up and, reluctantly, joining with I-90. The long, monotonous miles of cornfields prompted my comment: "I bet a lot of farm kids look at this freeway and think, 'That road's my ticket out of here.'"
Just west of Welcome, we left the interstate and drove eight miles north on Minnesota 4 to the first settlement of Trimont. Over the years, my aunts and uncles had left Ormsby, where my Grandma Kuehl had lived until her death in 1965: Gilma, Dorothy and Viola now resided in Trimont; Bernita, in St. James.
We had supper that evening at Aunt Gilma's: pork chops, green-beans-and-Velveta casserole, jello salad with a dollop of Miracle Whip. After the dishes were done, I put Aaron in his stroller and walked along the deserted main street, past the cafe where retired farmers, like my uncle Bill, went to shoot the breeze about the price of corn.
I pushed the stroller to the very edge of town. Strange, but this town really did have an edge. Next to the implement shop, just beyond the railroad tracks, Trimont ended and fields of soybeans, lavender and pinkish in the last rays of sunlight, began.
I thought of all the cities and towns I have known in which the residents were strangers, and of my son who has logged more jet time than most of his Minnesota uncles and aunts have accrued in their lifetimes. Aaron has flown from Los Angeles to Milwaukee for two Christmases, two weddings and one family reunion. He's traveled the West Coast in his parents’ van, his first camping trip when he was not yet three months old.
The long-awaited family reunion took place on Saturday afternoon at the shelter in one of Trimont's two parks. Aaron wasn't yet walking, but I set him down as soon as we got there and didn't pick him up again until we left six hours later. He had plenty of great aunts who were more than willing to fuss over him, and he was pleased to explore on his own, getting dirtier than my cousin Nick's 1000-pound sows.
I hadn't been to a family reunion in nine years, when my husband and I had driven out from Chicago, where we lived before moving to California. Cousins I had remembered as delightful preschoolers were now in junior high, and those who had been fixed in my memory as insecure teenagers had become lawyers, small business-owners, middle managers and teachers in my absence. My cousin Heidi is a now wildlife biologist for the Minneapolis Zoo.
As I now put maps of Wisconsin and Minnesota in Aaron's baby book and mark our route in yellow felt pen, I think of my aunts and uncles in rural Minnesota, who, almost without exception, have never traveled abroad, indeed many rarely leave their immediate area. A shopping excursion to Minneapolis, a little over two hours away by freeway, is a major trip. I thought of L.A., where I now live, and how one city rubs right up against the next with only a sign to let you know you've left one for another.
Even the surrounding areas are not familiar. I had asked my Aunt Dorothy what she knew of Swastika Beach, a town less than 20 miles from her home in Trimont. "How did it get that name?" I wondered. She'd said she'd never heard of the place, yet, in over 70 years, she's never lived more than 50 miles away. "There are so many little settlements no one ever hears about," she had answered. "You only know the towns where someone you know lives."
I think of the traveling my son will do in his lifetime, the people he'll meet and befriend in far-off places and the towns he'll know even though he knows no one in them. I have only two wishes for my young traveler: that he'll also want to "know his roots," as his grandmother would say--the Kuehls who will wait for him every summer at family-reunion time in places like Ormsby, Trimont, St. James and Alpha; and that maybe someday he and I will both discover what goes on in Swastika Beach. Until then, youngest cousin Vonn and best-looking cousins Nick and Neal will continue to farm the rich black earth that provided a livelihood for my grandparents, Reinhold and Augusta, and so assured that their children would grow to adulthood and have children of their own, who would gather together for family reunions like this one
Slipping
About two months ago, I was at my peak. I was working at a good pace at cardiac rehab without any symptoms. I had no chest pain or constriction, no shortness of breath. If only I could have had transplant surgery at that time.
Since then, things have declined. This is the first I've admitted this to anyone, out of concern that, should I say anything, I will be taken off the transplant list. My performance at cardiac rehab has gone down. I have had to scale back on both the incline and the speed on the treadmill. At night I have to sleep almost sitting up because of the chest constriction I feel if I am lying prone.
I am hoping for a miracle or a quick transplant. I have to put my energy into mind over matter, telling myself even when I am symptomatic, "It is easy for me to climb these stairs. It is easy for me to walk this distance. It is comfortable for me to lie in bed."
Since then, things have declined. This is the first I've admitted this to anyone, out of concern that, should I say anything, I will be taken off the transplant list. My performance at cardiac rehab has gone down. I have had to scale back on both the incline and the speed on the treadmill. At night I have to sleep almost sitting up because of the chest constriction I feel if I am lying prone.
I am hoping for a miracle or a quick transplant. I have to put my energy into mind over matter, telling myself even when I am symptomatic, "It is easy for me to climb these stairs. It is easy for me to walk this distance. It is comfortable for me to lie in bed."
Wednesday, October 27, 2010
My First Sweater
Since February of this year, I have been attending a knitting group. I was invited by my massage client Carol (shown here on right; Mary on left), who has been attending for years. I have long wanted to advance beyond scarves and slippers, and so I took on the task of knitting my first sweater.Although I have missed many of the Tuesday sessions due to hospitalization, travel, or other commitments, I have become a regular. Definitely I am the youngest in the group. Some women have me beat by more than 30 years. For the most part, we avoid discussion of sex, politics, and religion, so all goes smoothly.
The meetings are hosted at Fern's house in east Long Beach. Fern has spent hours helping me, showing me new ways of casting on and giving me all sorts of tips. Here she is shown with me in the sweater I finally finished--whew! It turned out way too big, but Fern says that if I bring it next time, she'll block it for me, a way of ironing a finished product to make it lay nicer. We'll see.Despite the imperfections that can be seen in the sweater upon examination, I'm proud of my handiwork. I've learned a lot during these past nine months of working on it. My next challenge: socks.
Though the size and composition of the knitting group change every week, here are a few more of the regulars:
* Marcia (with book)
* Annie to her left, our right, who happens to be my next-door neighbor
*Mel on the right
Mel left for Barcelona today. She and her boyfriend are taking a Mediterranean cruise. Carol told me that years ago, she and her beau would split the travel costs until Mel told him that she could no longer afford to pay her half. The boyfriend said that was OK, he'd pay for everything. At least once a month, the two of them take a major trip. Wow, how do I get that kind of gig? Seems as distant as my shot at landing the presidential nomination for the 2012 election!
Sunday, October 24, 2010
The Nourishment of Acquaintances
Friday was my last day of cardiac rehab. I've been attending a one-hour workout three times a week since February. I had to take a few months off when I broke my hip, but then I got back to it again. I want to stay in the best possible shape for my eventual transplant surgery--and to keep my heart in good enough condition to stay on the wait list for a kidney.
For the most part, the other rehab patients have been of the World War II generation, though occasionally there has been a person my age or even younger. I especially bonded with Mary Jo, 83, a woman I wished were my mom. She was fun, funny, thoughtful, and "with it." She revealed things about herself as we were walking side by side on our respective treadmills, but she also asked questions about me. She's pictured here, the one with glasses. Lois, the other gal, was also part of the 10 a.m. group.
Lois said to me on Friday that she was a bit sad, leaving cardiac rehab. She had really enjoyed her time with everyone here. I said I have enjoyed it too, that I receive so much nourishment from my interactions with acquaintances and strangers, that on a daily basis, I receive so much more juice from them than from friends, whom I rarely see. She said this is her experience too.
Friends are wonderful, don't get me wrong. But they have always been rare treats in my life, not the meat and potatoes of my existence. For the most part, they just haven't been around. They're busy with work, relationships, family, school, housework, errands, travel, creative projects, dating, other friends and other social obligations. Or they live hundreds or thousands of miles away. Getting together is a real chore. Sometimes I email or phone a dozen times before I get a response, and then it is often that she or he can't see me. Of my So Cal friends, I have seen Susie and Daphne twice this year, Jose just once, and Othman perhaps a half dozen times. I haven't seen Diana since February. Bev and the other Diana maybe twice this year. I see Tom a few times a month, usually to exchange books. Chris and I have long phone conversations, but we only see each other in person every few months, despite the fact that he lives less than a mile away. When I go beyond a year without seeing a So Cal friend, I hold nothing against him, but I realize that he's moved on.
I always have a good time when I see my friends. Just last Sunday, for example, I had two passes for brunch at the Trump National Golf Club in Rancho Palos Verdes. It was a perk for writing an article for Long Beach Magazine that, in part, discussed the club. Susie and I had a great time, chatting over caviar, sushi, oysters, and all the other components of the nicest brunch I have ever attended--with the best view. But Susie is a busy gal, scrambling as she is to make a living. I realize that visits with her, though wonderful, are going to be infrequent. She, like my other friends, are creme brulee--fantastic, but not something I'm going to enjoy every night.
Every night before dropping off to sleep, I give gratitude for the things and persons of my day. Of course, Aaron and Rasputin always top the list. And then there are Janet and Dana, the best neighbors ever. So often, though, I say thank you for pleasant interactions with strangers, other neighbors, and acquaintances. Too often people think of these interactions as nothing special, that the stuff of relationships is found with lovers, family, and friends. I strongly disagree. A great deal of nourishment comes from those I hardly know or don't know at all.
Lois said to me on Friday that she was a bit sad, leaving cardiac rehab. She had really enjoyed her time with everyone here. I said I have enjoyed it too, that I receive so much nourishment from my interactions with acquaintances and strangers, that on a daily basis, I receive so much more juice from them than from friends, whom I rarely see. She said this is her experience too.
Friends are wonderful, don't get me wrong. But they have always been rare treats in my life, not the meat and potatoes of my existence. For the most part, they just haven't been around. They're busy with work, relationships, family, school, housework, errands, travel, creative projects, dating, other friends and other social obligations. Or they live hundreds or thousands of miles away. Getting together is a real chore. Sometimes I email or phone a dozen times before I get a response, and then it is often that she or he can't see me. Of my So Cal friends, I have seen Susie and Daphne twice this year, Jose just once, and Othman perhaps a half dozen times. I haven't seen Diana since February. Bev and the other Diana maybe twice this year. I see Tom a few times a month, usually to exchange books. Chris and I have long phone conversations, but we only see each other in person every few months, despite the fact that he lives less than a mile away. When I go beyond a year without seeing a So Cal friend, I hold nothing against him, but I realize that he's moved on.I always have a good time when I see my friends. Just last Sunday, for example, I had two passes for brunch at the Trump National Golf Club in Rancho Palos Verdes. It was a perk for writing an article for Long Beach Magazine that, in part, discussed the club. Susie and I had a great time, chatting over caviar, sushi, oysters, and all the other components of the nicest brunch I have ever attended--with the best view. But Susie is a busy gal, scrambling as she is to make a living. I realize that visits with her, though wonderful, are going to be infrequent. She, like my other friends, are creme brulee--fantastic, but not something I'm going to enjoy every night.
Acquaintances, neighbors, and strangers are much different. I'm not interrupting their lives to meet up with them. They are simply going about their lives and happen to bump into me going about mine. There is no planning or scheduling involved. They're not going out of their way to see me, and I'm not making an effort to see them. They are simply there, as I am, doing their shopping, walking their dogs, taking out the garbage, watering their lawns, going to cardiac rehab. We may exchange a smile and a few kind words, then we're on our way.
Every night before dropping off to sleep, I give gratitude for the things and persons of my day. Of course, Aaron and Rasputin always top the list. And then there are Janet and Dana, the best neighbors ever. So often, though, I say thank you for pleasant interactions with strangers, other neighbors, and acquaintances. Too often people think of these interactions as nothing special, that the stuff of relationships is found with lovers, family, and friends. I strongly disagree. A great deal of nourishment comes from those I hardly know or don't know at all. Thursday, October 21, 2010
Hooking Up
Every night I hook up for 10 ½ hours,
not with a supernaturally virile man
but a dialysis machine.
All night long it grunts, groans, and moans,
pushing clean fluids into me,
sucking dirty ones out.
Like an ideal man in some fantasy relationship,
my dialysis machine sustains me,
cleanses me, gives me another day of life.
Of course, it’s a life without hope
of romance, relationship, passion, or sex,
since every guy I’ve told so far
has immediately shunned me,
without even a good-bye call or first kiss.
All day long, I carry reminders of these hook-ups:
a foot of tubing that issues from the hole in my belly
and a penis-like transfer set by which I attach to the machine’s tubes.
Each morning after I shower and change the dressing,
I place the transfer set in a baby sock,
wrap the sock with a ponytail tie,
then slip all this inside my panties,
hiding the evidence under my clothes.
All day long, this artificial penis
rubs against my crotch,
the closest I ever get now
to what everyone else calls a hook-up.
not with a supernaturally virile man
but a dialysis machine.
All night long it grunts, groans, and moans,
pushing clean fluids into me,
sucking dirty ones out.
Like an ideal man in some fantasy relationship,
my dialysis machine sustains me,
cleanses me, gives me another day of life.
Of course, it’s a life without hope
of romance, relationship, passion, or sex,
since every guy I’ve told so far
has immediately shunned me,
without even a good-bye call or first kiss.
All day long, I carry reminders of these hook-ups:
a foot of tubing that issues from the hole in my belly
and a penis-like transfer set by which I attach to the machine’s tubes.
Each morning after I shower and change the dressing,
I place the transfer set in a baby sock,
wrap the sock with a ponytail tie,
then slip all this inside my panties,
hiding the evidence under my clothes.
All day long, this artificial penis
rubs against my crotch,
the closest I ever get now
to what everyone else calls a hook-up.
Waiting for Test Results
I spoke with Cindy yesterday. She sent the blood test to UCLA. Now we just have to wait two to three weeks for the results. If she is a match, she'll then fly to UCLA for tests to see if she is sufficiently healthy to donate.It's always a waiting game with the transplant process.
Tuesday, October 19, 2010
Cindy's Veins
Last Monday, Cindy went for the blood test to see if she and I are compatible. Her vein collapsed, so she had to let it heal for a week. Yesterday she was supposed to have repeated the test.
After the blood is sent to UCLA, it will take two to three weeks before we hear whether we're a match. So by Thanksgiving we should know. A "yes" answer would cetainly be something to be thankful for.
After the blood is sent to UCLA, it will take two to three weeks before we hear whether we're a match. So by Thanksgiving we should know. A "yes" answer would cetainly be something to be thankful for.
Thursday, October 07, 2010
I Went Camping Anyway
About 12 hours after I wrote the post "Best Not to Travel Alone" (Sept. 13), I did. Yes, that was the day after I had had a paramedic visit. I needed to see a client near Sacramento, and a last-minute flight on Jet Blue was something like $300, so I opted to drive. I headed up the coast with Rasputin. We overnighted at the campground at Pfeiffer Big Sur State Park.
Because I had no electricity, I had to perform four manual exchanges of dialysis solution every day. This was quite a chore. At approximately an hour apiece, this consumed a good chunk of my time. I sat inside the truck and placed the empty dialysis bag on the floor, then let the solution that had been inside my tummy drain out into the bag. I attached the dialysis solution bag to the clip on the sun visor so that the solution could drain into me. I maintained the hygience standards that I do at home, cleaning beforehand with Lysol, scrubbing my hands with bacterial soap and antiseptic lotion, and wearing a surgical mask. What's remarkable to me is that I was always able to have some privacy.
The second day I gave a call to Sharon, the first friend I made when moving to So Cal in 1981. Decades ago Sharon moved to Northern California, and when I was making the 600-and-some-mile commute from Huntington Harbor to Point Arena (1996-2000), I would often spend the night at Sharon's in Mountain View. She has since married, moved to Santa Cruz, and had a baby, who is now 7 years old. I haven't seen Sharon for about a decade, but I gave her a call anyway, on the off chance that she might be free for coffee.
Really wonderful to see Sharon again. We were so comfortable, as if we had been in touch throughout this decade. I don't think there are very many people with whom I could just pick up again like that. Sharon, Peter, and Chloe will be visiting family for a week in So Cal around Thanksgiving. Sure hope to see them then.Monday, October 04, 2010
Sure Would be Nice
Just returned from the grocery store, where I stood behind a man who complimented me on a purple and lavendar scarf a massage client had knit for me. He was in his late 40s, decent-looking, and seemed to be a tradesman of some sort. He said the scarf was "beautiful" and that his wife had some flowers that reminded him of it.
The interchange was so sincere and kind that I couldn't help but think, "Wow, it sure would be nice to have a man like that in my life. A sweetie who would say nice things to me now and again. What must that be like?"
For the most part, I do a damn good job of forgetting that this huge part of my life is missing, but once in a while, like this afternoon in the checkout line, it creeps in and I wonder, "Will I ever know what a good relationship is? Will I ever have that experience of love, tenderness, and companionship in this life?"
The interchange was so sincere and kind that I couldn't help but think, "Wow, it sure would be nice to have a man like that in my life. A sweetie who would say nice things to me now and again. What must that be like?"
For the most part, I do a damn good job of forgetting that this huge part of my life is missing, but once in a while, like this afternoon in the checkout line, it creeps in and I wonder, "Will I ever know what a good relationship is? Will I ever have that experience of love, tenderness, and companionship in this life?"
Wednesday, September 29, 2010
Food Under Attack
I know it's hard to believe for those of you out there who think that, at worst, the government is inefficient and incompetent, but wake up, folks, there are two bills facing Congress that would make it illegal to have a home garden, belong to an organic food coop, or in any other way subvert the interests of big agra.
Almost two decades ago, my ex-British secret service buddy, Brian Desborough, told me that one of the aims of the corporate-government collusion was to control the food supply because everyone needs to eat. If you can completely control food, you can completely control the populace. Of course, then you can add things to the food to pacify or otherwise manipulate people. Well, that Orwellian age is upon us.
A July police raid in Venice, California--that's right with guns drawn as if it were a drug bust--on an organic, raw food store is a case in point of what is to come if big business and those senators and congressional reps who prostitute themselves to big business have their way. To watch the surveillance camera video of this bust, see the Los Angeles Times.
I got the brilliant idea that one way to fight the corporate takeover of our food supply is to prosecute corporations under the provision of the so-called Patriot Act that, in part, defines a terrorist as someone who "disrupts commerce." This provision has been used against animal rights, environmental, and peace activists, labeling them terrorists for exercising their constitutional right to protest. Why not turn the tables and use the Patriot Act against corporations that are disrupting commerce at raw food stores and organic food coops! And against the evil Monsanto, which has been strong-arming farmers into buying its genetically modified seeds and running them out of business if they attempt to save their seed from year to year.
Wake up, folks. Get informed. Your government has been hijacked by corporate interests. We all need to fight back in whatever way we can, including buying as little as possible from large stores, actually, buying most of what we need from yard sales and thrift stores. And growing our own food--while we still can!
Tuesday, September 28, 2010
UCLA Gave Its Go-Ahead
I heard from Cindy. UCLA has given its go-ahead on the transplant. This is such good news.
Monday, September 27, 2010
111 Outside, 130 in my Bedroom
The heat is ungodly. Only one ceiling fan off the kitchen. The one in the living room has not been working for week, though I've been promised a new one to be installed tomorrow. The temperature inside my apartment is in the 120s, but my bedroom is even higher.
Because of the cleanliness that must be maintained with peritoneal dialysis, I have to keep my windows closed at all times, not use the ceiling fan because it stirs up dust and dirt, and keep the door closed. Oh, my god, does that make for a hot box! Imagine sleeping inside an oven.
When I have asked the PD nurses about this situation, they have just repeated the training manual: Keep the windows and door closed, don't use the ceiling fan or A/C (the latter of which I don't have). They simply cannot think outside the box. I ask them if it would be preferable if I die of heat exhaustion. They just go back to repeating the manual. UGH!
Because of the cleanliness that must be maintained with peritoneal dialysis, I have to keep my windows closed at all times, not use the ceiling fan because it stirs up dust and dirt, and keep the door closed. Oh, my god, does that make for a hot box! Imagine sleeping inside an oven.
When I have asked the PD nurses about this situation, they have just repeated the training manual: Keep the windows and door closed, don't use the ceiling fan or A/C (the latter of which I don't have). They simply cannot think outside the box. I ask them if it would be preferable if I die of heat exhaustion. They just go back to repeating the manual. UGH!
Saturday, September 25, 2010
No News
Yesterday was to have been the day that the UCLA panel was to have made its decision regarding Cindy's eligibility. I expected to receive word from Cindy, but I have not heard anything. This week I sent her two emails and a Facebook message and left two voice messages.
When Janet, my next-door neighbor, was my potential donor ,we talked every day during our walks with our dogs. When either of us received info from UCLA, we would tell each other about it that day. And when Janet and I were working on a paired donation with Bob and Maria, I spoke with or emailed Bob many times a week. I have not received emails from Cindy for a month or so and have only spoken with her twice on the phone, the last time a week ago. Both times I have, she has been very enthusiastic about the transplant; she says, "where there's a will, there's a way"; and she gives me every indication that she is 100% on board. She strikes me as a compassionate, hardworking, thoughtful woman who wants to give through her work and through her everyday living.
I understand that she may not have time for a phone conversation, but a short email that said "UCLA gave a go-ahead" or "I spoke with my brother, and I'm going to wait to give my kidney to him when the time comes" would be fine too. If Cindy has reconsidered, I'd like to know so I can pursue some other avenue, and if she is moving forward with UCLA, I'd sure like to know that too. I'd like to be in the loop.
The UCLA coordinator won't talk with me about what's going on because her ethical and legal directive is to protect the rights of the donor. And the coordinator won't tell Janet anything about Cindy's status because that is a privacy issue. The system is designed to protect the donor, as it should be. Any information I get has to come from Cindy.
I'm sure she's busy as she works full-time, is studying to be an RN, and is in a relationship, any one of which is time-consuming. I'll wait a day or so and then try to contact her again. And in the meantime, I just have to let the whole thing slip out of my mind. What is going to happen is going to happen, with or without me thinking about it.
When Janet, my next-door neighbor, was my potential donor ,we talked every day during our walks with our dogs. When either of us received info from UCLA, we would tell each other about it that day. And when Janet and I were working on a paired donation with Bob and Maria, I spoke with or emailed Bob many times a week. I have not received emails from Cindy for a month or so and have only spoken with her twice on the phone, the last time a week ago. Both times I have, she has been very enthusiastic about the transplant; she says, "where there's a will, there's a way"; and she gives me every indication that she is 100% on board. She strikes me as a compassionate, hardworking, thoughtful woman who wants to give through her work and through her everyday living.
I understand that she may not have time for a phone conversation, but a short email that said "UCLA gave a go-ahead" or "I spoke with my brother, and I'm going to wait to give my kidney to him when the time comes" would be fine too. If Cindy has reconsidered, I'd like to know so I can pursue some other avenue, and if she is moving forward with UCLA, I'd sure like to know that too. I'd like to be in the loop.
The UCLA coordinator won't talk with me about what's going on because her ethical and legal directive is to protect the rights of the donor. And the coordinator won't tell Janet anything about Cindy's status because that is a privacy issue. The system is designed to protect the donor, as it should be. Any information I get has to come from Cindy.
I'm sure she's busy as she works full-time, is studying to be an RN, and is in a relationship, any one of which is time-consuming. I'll wait a day or so and then try to contact her again. And in the meantime, I just have to let the whole thing slip out of my mind. What is going to happen is going to happen, with or without me thinking about it.
Monday, September 20, 2010
Hopes and Hurdles in the Transplant Process
I spoke with Cindy, the young woman in Phoenix who is interested in donating a kidney. She sent her initial paperwork to UCLA and received a call from Jen, one of the transplant coordinators, the next day, so things are moving in the right direction.
Jen is concerned that Cindy is only 26, and the minimum age for living donors, at least at UCLA, is 25. Since Cindy is so young, she has not established medical history as has someone who is older than her, i.e., very little has gone awry in her physical makeup. Therefore, UCLA has to look at her family's medical history rather than concentrating on her own. Since her mother and brother both have hypertension, she is more likely to develop hypertension in the future than someone her age with no family history of hypertension.
Because of her age, her friend-of-a-friend connection with me, and her family history of hypertension, her case must go before a panel that meets tomorrow. Cindy told me that they should have a decision before the week's end and that Jen has promised her a call by this Friday.
Jen also suggested that Cindy talk with her brother, who received a kidney from their sister 15 years ago. Fifteen years is the average life span of a living-donor kidney, and though the brother is doing well now, he may need another kidney in the future. Jen wondered if Cindy would rather wait in the wings for her brother's need to manifest than give her kidney to a stranger. For some reason, I hadn't thought of this before Cindy mentioned it, but I can certainly understand how that would be a big concern for her.
So as of this writing, I am thankful that things are progressing in the right direction, but as is my m.o. with everything that is possible in this life, it is best not to be attached to a particular outcome. I sure hope Cindy is able and willing to donate to me, but if the panel rules against her or if her brother wants her to save her kidney for him, I will avoid debilitating disappointment and discouragement by not being too wedded to these outcomes. In fact, I spend very little thought time with possible outcomes. I am clear about what I want, but then I let go of the thought and let the universe work its magic.
As I told Cindy during our last phone conversation, I am so thankful for her stepping forward. Just the fact that she has done that, that she sincerly wants to donate to me, is a great gift. To think that a stranger would want to save my life--that is truly remarkable. If that does not happen for one reason or another, that in itself is still such a wonderful thing, that a stranger would feel compassion for me and want to help. Wow!
Jen is concerned that Cindy is only 26, and the minimum age for living donors, at least at UCLA, is 25. Since Cindy is so young, she has not established medical history as has someone who is older than her, i.e., very little has gone awry in her physical makeup. Therefore, UCLA has to look at her family's medical history rather than concentrating on her own. Since her mother and brother both have hypertension, she is more likely to develop hypertension in the future than someone her age with no family history of hypertension.
Because of her age, her friend-of-a-friend connection with me, and her family history of hypertension, her case must go before a panel that meets tomorrow. Cindy told me that they should have a decision before the week's end and that Jen has promised her a call by this Friday.
Jen also suggested that Cindy talk with her brother, who received a kidney from their sister 15 years ago. Fifteen years is the average life span of a living-donor kidney, and though the brother is doing well now, he may need another kidney in the future. Jen wondered if Cindy would rather wait in the wings for her brother's need to manifest than give her kidney to a stranger. For some reason, I hadn't thought of this before Cindy mentioned it, but I can certainly understand how that would be a big concern for her.
So as of this writing, I am thankful that things are progressing in the right direction, but as is my m.o. with everything that is possible in this life, it is best not to be attached to a particular outcome. I sure hope Cindy is able and willing to donate to me, but if the panel rules against her or if her brother wants her to save her kidney for him, I will avoid debilitating disappointment and discouragement by not being too wedded to these outcomes. In fact, I spend very little thought time with possible outcomes. I am clear about what I want, but then I let go of the thought and let the universe work its magic.
As I told Cindy during our last phone conversation, I am so thankful for her stepping forward. Just the fact that she has done that, that she sincerly wants to donate to me, is a great gift. To think that a stranger would want to save my life--that is truly remarkable. If that does not happen for one reason or another, that in itself is still such a wonderful thing, that a stranger would feel compassion for me and want to help. Wow!
What a Joy to See Gerald Locklin Again!
About 30 years ago, I was a student in Gerald Locklin's poetry-writing class at Cal State Long Beach. He encouraged me to attend readings throughout Southern California and to never give up writing. He and I read together at many venues, including the Anti-Club and Club Fuck with Dave Alvin of the Blasters.
Never giving up writing has often meant attempting to earn a living as a journalist and an editor, not as a poet and short-story writer, but I have always continued to write.
Years ago Aaron first told me that he sometimes saw Ger at It's a Grind Coffeehouse near his dad's house. Each time Aaron told me this, I asked him to please give Ger my number the next time he saw him.
Then on Saturday morning, I mentioned over breakfast that it would sure be nice to see Gerry again. A few hours later, I checked my email and saw an invitation from Open Bookstore a few blocks away for a poetry reading Gerald Locklin would be giving that night. What synchronicity!
I dressed up and went over. Gerry recognized me immediately and we spoke a little bit before and after his reading. I laughed harder than anyone else at his funny, earthy poems and beamed to beat the sun at his poems that offered insights into classical works of art. Ger runs the gamut.
I told Ger how much it had meant to me, all these many years ago, when my then-husband and I had attended one of his readings in Echo Park. When he saw me in the audience, he introduced me, giving up some of his time so that I could read. I told him that just thinking of the kindness and encouragement he showed me in this simple act gets me choked up. One of the nicest things anyone has ever done for me.
His most recent book, "Modest Aspirations," is a collaboration between him and short-story writer Beth Wilson of Oklahoma. Back in the early '90s, Gerry had taught a class at the University of Oklahoma, and Beth had gone up to him and said she wanted to be a writer and that she wanted him to tell her everything she needed to know. This assertiveness impressed Gerry, and so they stayed in touch, primarily via email, him attempting to help her as much as possible.
I was touched by this beautiful story, but also a bit ashamed. Gerry had believed in me as a poet, and I might have been his first Beth Wilson, but I put poetry on the back burner. Of course, I've continued to write poetry, and I've got a collection of 20 short stories that I'd love to see published, but I have not made a full-out effort to see my work in book form.
Yesterday I emailed Gerry, telling him that I sure would appreciate him pointing me in the right direction. I wrote that my creative life seems to echo my love life: "I look at my work, and I know it's very good and that I have a distinctive voice, but it does not attract the attention of people who are in the position to publish it, just as I take inventory of myself as a woman and behold an intelligent, sexy, good-looking, trim, playful, fun-loving, humorous, generous, loving gal, but that somehow is not what men are looking for."
I sent him three short stories and asked for his advice as to where to send them. I really would love for my work to get out into the world, to touch more people than it has been able to do thus far. I would really like to see that in the time I have left. Perhaps Ger will respond, but I told him that if he is not so inclined to please put me on his email list because I'd love to see him perform again. What a treat!
Never giving up writing has often meant attempting to earn a living as a journalist and an editor, not as a poet and short-story writer, but I have always continued to write.
Years ago Aaron first told me that he sometimes saw Ger at It's a Grind Coffeehouse near his dad's house. Each time Aaron told me this, I asked him to please give Ger my number the next time he saw him.
Then on Saturday morning, I mentioned over breakfast that it would sure be nice to see Gerry again. A few hours later, I checked my email and saw an invitation from Open Bookstore a few blocks away for a poetry reading Gerald Locklin would be giving that night. What synchronicity!
I dressed up and went over. Gerry recognized me immediately and we spoke a little bit before and after his reading. I laughed harder than anyone else at his funny, earthy poems and beamed to beat the sun at his poems that offered insights into classical works of art. Ger runs the gamut.
I told Ger how much it had meant to me, all these many years ago, when my then-husband and I had attended one of his readings in Echo Park. When he saw me in the audience, he introduced me, giving up some of his time so that I could read. I told him that just thinking of the kindness and encouragement he showed me in this simple act gets me choked up. One of the nicest things anyone has ever done for me.
His most recent book, "Modest Aspirations," is a collaboration between him and short-story writer Beth Wilson of Oklahoma. Back in the early '90s, Gerry had taught a class at the University of Oklahoma, and Beth had gone up to him and said she wanted to be a writer and that she wanted him to tell her everything she needed to know. This assertiveness impressed Gerry, and so they stayed in touch, primarily via email, him attempting to help her as much as possible.
I was touched by this beautiful story, but also a bit ashamed. Gerry had believed in me as a poet, and I might have been his first Beth Wilson, but I put poetry on the back burner. Of course, I've continued to write poetry, and I've got a collection of 20 short stories that I'd love to see published, but I have not made a full-out effort to see my work in book form.
Yesterday I emailed Gerry, telling him that I sure would appreciate him pointing me in the right direction. I wrote that my creative life seems to echo my love life: "I look at my work, and I know it's very good and that I have a distinctive voice, but it does not attract the attention of people who are in the position to publish it, just as I take inventory of myself as a woman and behold an intelligent, sexy, good-looking, trim, playful, fun-loving, humorous, generous, loving gal, but that somehow is not what men are looking for."
I sent him three short stories and asked for his advice as to where to send them. I really would love for my work to get out into the world, to touch more people than it has been able to do thus far. I would really like to see that in the time I have left. Perhaps Ger will respond, but I told him that if he is not so inclined to please put me on his email list because I'd love to see him perform again. What a treat!
Tuesday, September 14, 2010
Viva Las Vegas--For Somebody Else
I have long had a snobby attitude toward Las Vegas, so when a great deal came up for a four-day, three-night vacation at the MGM Grand, I grabbed it.
The continual barrage of lights, sound, movement, and commercialism was overwhelming. Even poolside, where one would expect to relax, quiet was denied, as pounding pop pervaded the air.
Aaron and I did a lot of walking. We visited quite a few of the casinos, so that I could see "what everyone is talking about." We went to Freemont Street for the nighttime overhead extravaganza of some half million lights.
Over lunch one day, I wondered if people really like this or if it's just a lot of group think, that they've been told that Vegas is where it's at. Or maybe it's just that they don't know anything else.
My favorite things about Vegas were the flowers at the MGM Grand reception desk. These incredible arrangements featured roses and orchids placed upside down in long vases. Stunning. Also, we awoke on our first morning in Vegas to a sky filled with dramatic thunderclouds. This was really beautiful.
So like Disneyland, Vegas is now a place I never need to see again. I'm glad I experienced it, but that was enough for a lifetime.
I always remember the phrase "contempt prior to investigation" from the AA meetings I attended with Mike. I had been doing just that, so I set out to investigate and to see if my contempt was justified.
The continual barrage of lights, sound, movement, and commercialism was overwhelming. Even poolside, where one would expect to relax, quiet was denied, as pounding pop pervaded the air.
Aaron and I did a lot of walking. We visited quite a few of the casinos, so that I could see "what everyone is talking about." We went to Freemont Street for the nighttime overhead extravaganza of some half million lights.
Over lunch one day, I wondered if people really like this or if it's just a lot of group think, that they've been told that Vegas is where it's at. Or maybe it's just that they don't know anything else.
Despite what the ads tell you, Vegas is one of the safest vacation experiences around. Food is never more than a hundred yards away. You're protected from the heat by excessive A/C. It's easy to find a place to sleep for the night. Help is always close at hand. In truth, if someone really wanted a dangerous and risky and edgy vacation, he could leave Vegas and trek around in the open desert that surrounds it. But that would be outside the bounds of group think.
My favorite things about Vegas were the flowers at the MGM Grand reception desk. These incredible arrangements featured roses and orchids placed upside down in long vases. Stunning. Also, we awoke on our first morning in Vegas to a sky filled with dramatic thunderclouds. This was really beautiful.
For the last 24 hours, I rented a car. We drove to Mt. Charleston and had dinner at the lodge. The food was the best we'd had, and the view of the mountains and forests was much more breathtaking than anything I'd seen at the hotels and casinos. The next day we toured the Ethel M Chocolate Factory and Red Rock Canyon. Definitely the natural won out over the man-made.
So like Disneyland, Vegas is now a place I never need to see again. I'm glad I experienced it, but that was enough for a lifetime.
Monday, September 13, 2010
Best Not to Travel Alone
For most of my adult life, I have traveled alone--to China and on many camping trips to remote areas throughout the U.S. and Canada. I always felt I could handle whatever came up--until now.
I was poised to take my very first camping trip since beginning dialysis. My truck is packed, and all is ready for an early-morning departure. All, that is, except my body.
After they left, I had about 60 carbs and was going to take the appropriate amount of insulin to cover this, but my blood sugar was only 110. I couldn't understand this, so I used another glucometer to retest. This time I got 107. Close enough. How could it be that I had had glucose through an IV and then had a meal but my blood sugar was perfect without insulin?
It used to be that I could call Mary Kay, the diabetic nurse, and ask her advice after hours, but that is no longer the case. No one is available to handle diabetic questions after 5 p.m. and before 9 a.m. or on the weekends or when Mary Kay is on vacation. This is truly a case of penny wise and pound foolish. The cost of having a diabetic nurse on call 24/7 is far less than that of ER visits, ambulance rides, hospitalizations, and the dire consequences of extremely low blood sugar. But that's the way it is now, so I just have to muddle through, not knowing what to do, until tomorrow morning.
I always feel beat up and hung over after such a dip in blood sugar. It frankly gives me pause to think that this might have occurred when I was alone with Rasputin at some out-of-the-way, sparsely populated, off-season campground. Knowing that untreated low blood sugar can easily result in death, I've decided to forego the camping trip, at least until I understand what is going on with my insulin requirements.
Camping while on dialysis was something I really wanted to do, not just because I love getting away from the city, but because so very few dialysis patients travel at all, much less camp. Camping always gave me so much joy and brought so much adventure, wonder, and beauty into my life. I wanted to feel that freedom again. I wanted to go camping to say to dialysis, "You're not going to restrict me. I'll show you."
Sure, camping on dialysis would be a royal hassle. Since I wouldn't have electricity, I'd have to do four manual exchanges per day. One upon waking, the second at 1 p.m., the third at 5, and the last before bed. Two liters each, the drain bag placed on the floor of my truck and the solution bag on my dashboard so that gravity would feed the fluid into my peritoneum. A lot of hassle, but I knew it would be doable.
In the end, it's not dialysis that has prevented this trip, but diabetes, the root cause of the kidney failure.
I was poised to take my very first camping trip since beginning dialysis. My truck is packed, and all is ready for an early-morning departure. All, that is, except my body.About an hour ago, paramedics were here. This is at least the seventh time they've been at this apartment since I moved in last July. Most people have maybe one paramedic visit at the end of their life. I am averaging almost one a month.
I had checked my blood sugar at 4 p.m., and it was a bit high--233--so I took the amount of insulin my pump recommended. Two hours later I had lost consciousness. Thank goodness Aaron had come home, found me disorientated, and called 911. The paramedics measured my blood sugar as 35, a dangerously low level, and administered an IV of glucose. This brought my level up to 331, a swing in the other direction.
I had checked my blood sugar at 4 p.m., and it was a bit high--233--so I took the amount of insulin my pump recommended. Two hours later I had lost consciousness. Thank goodness Aaron had come home, found me disorientated, and called 911. The paramedics measured my blood sugar as 35, a dangerously low level, and administered an IV of glucose. This brought my level up to 331, a swing in the other direction.
After they left, I had about 60 carbs and was going to take the appropriate amount of insulin to cover this, but my blood sugar was only 110. I couldn't understand this, so I used another glucometer to retest. This time I got 107. Close enough. How could it be that I had had glucose through an IV and then had a meal but my blood sugar was perfect without insulin?
It used to be that I could call Mary Kay, the diabetic nurse, and ask her advice after hours, but that is no longer the case. No one is available to handle diabetic questions after 5 p.m. and before 9 a.m. or on the weekends or when Mary Kay is on vacation. This is truly a case of penny wise and pound foolish. The cost of having a diabetic nurse on call 24/7 is far less than that of ER visits, ambulance rides, hospitalizations, and the dire consequences of extremely low blood sugar. But that's the way it is now, so I just have to muddle through, not knowing what to do, until tomorrow morning.
I always feel beat up and hung over after such a dip in blood sugar. It frankly gives me pause to think that this might have occurred when I was alone with Rasputin at some out-of-the-way, sparsely populated, off-season campground. Knowing that untreated low blood sugar can easily result in death, I've decided to forego the camping trip, at least until I understand what is going on with my insulin requirements.
Camping while on dialysis was something I really wanted to do, not just because I love getting away from the city, but because so very few dialysis patients travel at all, much less camp. Camping always gave me so much joy and brought so much adventure, wonder, and beauty into my life. I wanted to feel that freedom again. I wanted to go camping to say to dialysis, "You're not going to restrict me. I'll show you."
Sure, camping on dialysis would be a royal hassle. Since I wouldn't have electricity, I'd have to do four manual exchanges per day. One upon waking, the second at 1 p.m., the third at 5, and the last before bed. Two liters each, the drain bag placed on the floor of my truck and the solution bag on my dashboard so that gravity would feed the fluid into my peritoneum. A lot of hassle, but I knew it would be doable.
In the end, it's not dialysis that has prevented this trip, but diabetes, the root cause of the kidney failure.
Saturday, September 11, 2010
All Dolled Up, No Place to Go
I was poised to have my first date in a very long time. This guy interested me. The first time that's happened in many years. He is a doctor who lives simply, thereby seeming to fit both my sexual and worldview fantasies. We arranged to meet for coffee near my apartment.
I got all dolled up because I like to look good when I meet someone. I pulled out my black heels, my fitted black skirt, a robin's-egg-blue top, black suit jacket, moonstone necklace, and dangly abalone earrings. I put on mascara, eye shadow, and blush. I even practiced walking about in the heels for good measure.
An hour before we were to meet, my date called and canceled. He didn't feel like going out and was more interested in staying home and relaxing with his dog than meeting me. He wondered if we could postpone our meeting. Yes, we sure can--indefinitely.
So now I am relaxing at home with my dog. He was groomed today, so he's especially cute. And he never stands me up.
I got all dolled up because I like to look good when I meet someone. I pulled out my black heels, my fitted black skirt, a robin's-egg-blue top, black suit jacket, moonstone necklace, and dangly abalone earrings. I put on mascara, eye shadow, and blush. I even practiced walking about in the heels for good measure.
An hour before we were to meet, my date called and canceled. He didn't feel like going out and was more interested in staying home and relaxing with his dog than meeting me. He wondered if we could postpone our meeting. Yes, we sure can--indefinitely.
So now I am relaxing at home with my dog. He was groomed today, so he's especially cute. And he never stands me up.
Friday, September 03, 2010
Rasputin's Freakish Medical Anomalies
Two afternoons ago, Rasputin started to sneeze as if he were trying to blow his brains out his nostrils. They were such violent sneezes that shook his head and quaked his entire body. Much more than one would expect from an allergy.
This morning after I returned home from cardiac rehab, Aaron, who was getting ready for work, had an answer to the sneezing mystery. He had seen a blonde hair sticking out of Rasputin's nostril and had given it a tug. As Rasputin whined and fussed, Aaron eventually pulled out a 4-to-5-inch hair with follicle. No wonder the poor guy had been sneezing, trying to expel this strange protuberance from his insides. And as Rasputin's entire head is about five inches long with snout, this hair was either attached to his brain or holed up in a tight ball inside his nostrils. Either way it doesn't sound fun.
A few months ago, when Rasputin went to the vet for his annual checkup, creatnine was found in his urine, marking a decline in kidney function. I put Rasputin on a special dog food that is good for urinary woes, forced him to drink more water, and held him while I whispered softly to him, "I love you so much, Rasputin, but I do not want you to take on my challenges. I want you to be healthy and live a long, healthy life. You don't need to do this to be close to me." The urine test a month later gave him a clean bill of health, no kidney problems.
I have heard from others that dogs sometimes take on the medical ills of their owners. That's how much they love us. I'm so glad I had a soul-to-soul with Rasputin because I love him way too much to want him to get anything I have--not even something that looks like one of my blonde hairs up his nose!
And to think that it was blonde when he is white and sable. Do he and I have that much of a connection that his medical challenges have to reflect upon me with my blonde hair?
I have heard from others that dogs sometimes take on the medical ills of their owners. That's how much they love us. I'm so glad I had a soul-to-soul with Rasputin because I love him way too much to want him to get anything I have--not even something that looks like one of my blonde hairs up his nose!
Student Newspaper Profiles Me
Following is the article that appeared about me and kidney donation in the Cal State Long Beach student newspaper. The reporter told me that 300 words had to be cut from his copy, but still he was given a good amount of space to tell the story.
Not everything here is quite accurate, but all said, I am happy that the article was run. I'm sure it will raise awareness and may inspire students, faculty, and staff who read it to become donors. That is what's most important. I heartily thank David, the reporter, for his efforts toward that end.
Health, happiness and a hell of a spirit
By David Cowan
Published: Wednesday, September 1, 2010
Updated: Thursday, September 2, 2010 02:09
Heidi Nye looks like a picture of health. Sitting in a large brown leather chair, her small dog Rasputin — a pound rescue — sleeps quietly in her lap. She’s smiling. Even on the hot August day, Nye’s mood is high and her spirit is energetic.
Looks can be deceiving. Nye has had Type 1 diabetes for almost 40 years and will need a kidney transplant if she wants to live another 40. Yet Nye remains optimistic and considers herself a romantic.
“Even with the dialysis thing, I would meet the man of my dreams, and he would give me a kidney,” Nye jokes. “I look healthier and lot of that is attitude.”
Nye was an adjunct professor of journalism at Cal State Long Beach from 1987-2009 teaching between one to five classes almost every semester of those 20 years.
“I was given the opportunity to teach by Larry Meyer, so I started and got asked back and asked back and asked back,” Nye said. “Teaching, it’s like being in love, when things are working right.”
To this day, Nye still maintains a close relationship with former students.
Defining the disease
“Type 1 diabetes is the most severe type, the pancreas is not working” Nye explains. “Most people have Type 2 which means that their pancreas is overworking.”
Doctors estimate that there are about 23.6 million people with diabetes in America, but only 18 million have been diagnosed with the condition. Nearly 90 percent of those diabetics are Type 2. With changes to lifestyle and weight loss, Type 2 diabetes can normally be reversed. Nye is not so lucky and, for years, used an insulin pump. An insulin pump is an alternative to multiple daily injections of insulin by insulin syringe or an insulin pen. The pump releases a continuous insulin supply.
“Someone will say on TV that we’ve done wonders for [the treatment of] diabetes, but not for Type 1,” Nye said. “They solve Type 2 by putting people on better diets.”
Nye describes a bad insulin reaction as a near death experience, depending on how far gone you are.
“You get adrenalin sweats and it feels like you’re going to die if you don’t get something to eat,” Nye said. “It’s the adrenaline rush, the fight or flight…that wreaks havoc on the body.”
Dawn of dialysis
Initially, Nye was dead set against the idea of dialysis.
“I’m not going to do it,” Nye said she once claimed. “I’d prefer to die.”
However on Feb. 2, 2009 Nye began dialysis. Dialysis is primarily used to provide an artificial replacement for lost kidney function in people with renal failure. It is an imperfect treatment to replace kidney function because it does not correct the endocrine functions of the kidney.
It was “10 years building up to dialysis,” Nye said. “I don’t know how I got up — getting dressed would exhaust me.”
It was little wonder Nye was exhausted, in the last decade she was basically a workaholic filling her days teaching, working, editing and taking shifts as a massage therapist.
“It’s something to do with your hands and very spiritual,” Nye said.
During this time, Nye was working 7 days a week and also fulfilling her mom duties with her son who was going through junior high and high school. All this time, fluids were building up in her body.
What are sick people?
“People have different ideas of what sick people are, whether they should try avoidance or pity,” Nye said. “You learn to take care of yourself and I developed a positive nature.”
Nye has since been put on a waitlist for a kidney donation. In California, the wait for a type O kidney is 10 years. The lifespan of a person on dialysis is about 5 years. The waitlist for a kidney in Oregon, however, is only three years.
"People talk about moving to Oregon for the weather, I might move there for a kidney,” Nye said.
Even if Nye were to get a kidney, issues within the health care system make it difficult to keep.
“As soon as you’re on dialysis, you go on Medicare, however, you lose Medicare one year after you get a transplant,” Nye said. “You get off Medicare, you get off your immunosuppressants, you get back on dialysis.”
Immunosuppression involves an act that reduces the activation or efficacy of the immune system. Deliberately induced immunosuppression is generally done to prevent the body from rejecting an organ transplant, treating graft-versus-host disease after a bone marrow transplant.
Treatment
To fend off kidney failure, Nye undergoes the nightly process of peritoneal dialysis, where fluid is introduced through a permanent tube in the abdomen and flushed out every night while she sleeps. PD is used as an alternative to hemodialysis though it is far less common. It has comparable risks and expenses, but on the upside, Nye doesn’t have to get treatment from a medical facility. A major complication with PD is a risk of infection due to a permanent tube in the abdomen.
Nye’s dialysis machine is in her bedroom, which contains her bed, her dialysis machine, air purifier and several dozen boxes filled with glucose solution.
Watching Nye prepare her dialysis is as mesmerizing as it is meticulous. Nye begins by taking her blood pressure to “regulate the fluid balance.” After thoroughly scrubbing her hands with an antibacterial soap, she sprays the “cycler” down with Lysol disinfectant to ensure a sterile environment.
Now it’s time for a second round of scrubbing. This time, she also uses disinfectant wipes on each of her fingers. Her mood resembles some sort of deep meditation — focused but serene. She easily lifts two 5-liter bags of dialysis solution and a single liter of primer that will wash the impurities out of her blood later that night. Between the draining of the fluids in her system and the cycling of the new solution, the process takes 9-10 hours.
Finally, Nye puts on latex gloves and a surgical mask to protect against any other possible infection. She turns the machine on and normally waits for 30 minutes to heat the solution.
“When I change my dressing, I have a surgical mask on and I scrub with antibacterial soap and hydrogen peroxide,” Nye says about her permanent abdominal tube. “Having tape on your body 24/7 for 18 months, it itches and has the possibility of fungal or bacterial infection.”
Nye’s bedroom is unique for one other reason.
“I wanted a dog for companionship, but the dog stays away from the bedroom,” Nye said, keeping a close eye on Rasputin. The dog sits by the door, looking longingly into the forbidden room, mildly intimidated by the air purifier.
Incentive to change
Despite her health issues, Nye still leads an active lifestyle and has offers to continue teaching.
"Just the other day, I got a call from Dominguez Hills asking me to teach, with three days before the semester starts,” Nye said.
But Nye is working to raise awareness about organ donation as part of the Alliance for Organ Donor Incentives.
While The Alliance desires incentives for organ donors, they clearly state on their website organdonorincentives.org, “We are not proposing that private wealthy people should be allowed to buy organs or that money be waved in front of people who are desperate for money. For anyone who needs cash in a hurry, donating an organ under this proposal will not satisfy their need.”
Nye is currently the secretary of The Alliance and does several jobs from her home in order to raise awareness.
"I began tweeting as ‘dialysisdoll,’ posting news items, trying to say something significant in 140 characters,” Nye said. Nye also uses Facebook and maintains a blog, heidisheart.blogspot.com, to promote donor incentives.
“We should treat [organ donors] as heroes, we pay firefighters well for public services, that is something society values” Nye says. “[Donors] are saving lives, this is good for society.”
The journey continues
Nye met Robbie Berman, president of The Alliance, at a speaking engagement in Los Angeles, where he thought she’d be a good face for the organization as she is outwardly very healthy looking, despite being on dialysis. Eventually the two became involved in an HBO documentary about organ donation. It was during the filming in New York that Nye broke her hip and was hospitalized.
“The dialysis makes my bones brittle,” Nye explains. “The doctor in New York told me that if I wasn’t on dialysis, I would have fallen and gotten back up again.”
It was during her hospital stay that Nye tripped and broke her hip a second time. Even with the pain, Nye managed to look at the experience in a positive way.
“It was good filmmaking in the life of a dialysis patient,” Nye said. “We may look bright and vibrant, but we’re frail.”
The filming stopped and has been on hold for several months. Nye has heard that several other people who were involved in the documentary have since died waiting for an organ donation.
A Glimmer of Hope
In Phoenix, Arizona, a woman named Cindy has the type O kidney that Nye would need to get off dialysis permanently. Cindy’s brother received a kidney from a donor and now wants to be a donor herself. Nye and Cindy share one more coincidence, Cindy’s friend is a former student of Nye’s at CSULB.
Despite the astronomical odds that connect Cindy to Nye, there’s still much to be done and Nye remains cautious.
“I had a surgery scheduled with a neighbor [for a donation] but we just missed out with the final cross match,” Nye said, undeterred by the narrow miss. “We always say potential donor, people back-out, there are problems with cross matching. We’re asking people to give out of the kindness of their hearts.”
The two are still trading emails and haven’t yet talked on the phone.
Even if Nye gets a kidney, she says she plans to continue being an advocate for donor incentives.
In the end, Nye sums up her philosophy about life simply.
"It’s more about chutzpah than about health.”
For information on becoming a donor go to lifesharers.com or donatelifecalifornia.org.
Not everything here is quite accurate, but all said, I am happy that the article was run. I'm sure it will raise awareness and may inspire students, faculty, and staff who read it to become donors. That is what's most important. I heartily thank David, the reporter, for his efforts toward that end.
Health, happiness and a hell of a spirit
By David Cowan
Published: Wednesday, September 1, 2010
Updated: Thursday, September 2, 2010 02:09
Heidi Nye looks like a picture of health. Sitting in a large brown leather chair, her small dog Rasputin — a pound rescue — sleeps quietly in her lap. She’s smiling. Even on the hot August day, Nye’s mood is high and her spirit is energetic.
Looks can be deceiving. Nye has had Type 1 diabetes for almost 40 years and will need a kidney transplant if she wants to live another 40. Yet Nye remains optimistic and considers herself a romantic.
“Even with the dialysis thing, I would meet the man of my dreams, and he would give me a kidney,” Nye jokes. “I look healthier and lot of that is attitude.”
Nye was an adjunct professor of journalism at Cal State Long Beach from 1987-2009 teaching between one to five classes almost every semester of those 20 years.
“I was given the opportunity to teach by Larry Meyer, so I started and got asked back and asked back and asked back,” Nye said. “Teaching, it’s like being in love, when things are working right.”
To this day, Nye still maintains a close relationship with former students.
Defining the disease
“Type 1 diabetes is the most severe type, the pancreas is not working” Nye explains. “Most people have Type 2 which means that their pancreas is overworking.”
Doctors estimate that there are about 23.6 million people with diabetes in America, but only 18 million have been diagnosed with the condition. Nearly 90 percent of those diabetics are Type 2. With changes to lifestyle and weight loss, Type 2 diabetes can normally be reversed. Nye is not so lucky and, for years, used an insulin pump. An insulin pump is an alternative to multiple daily injections of insulin by insulin syringe or an insulin pen. The pump releases a continuous insulin supply.
“Someone will say on TV that we’ve done wonders for [the treatment of] diabetes, but not for Type 1,” Nye said. “They solve Type 2 by putting people on better diets.”
Nye describes a bad insulin reaction as a near death experience, depending on how far gone you are.
“You get adrenalin sweats and it feels like you’re going to die if you don’t get something to eat,” Nye said. “It’s the adrenaline rush, the fight or flight…that wreaks havoc on the body.”
Dawn of dialysis
Initially, Nye was dead set against the idea of dialysis.
“I’m not going to do it,” Nye said she once claimed. “I’d prefer to die.”
However on Feb. 2, 2009 Nye began dialysis. Dialysis is primarily used to provide an artificial replacement for lost kidney function in people with renal failure. It is an imperfect treatment to replace kidney function because it does not correct the endocrine functions of the kidney.
It was “10 years building up to dialysis,” Nye said. “I don’t know how I got up — getting dressed would exhaust me.”
It was little wonder Nye was exhausted, in the last decade she was basically a workaholic filling her days teaching, working, editing and taking shifts as a massage therapist.
“It’s something to do with your hands and very spiritual,” Nye said.
During this time, Nye was working 7 days a week and also fulfilling her mom duties with her son who was going through junior high and high school. All this time, fluids were building up in her body.
What are sick people?
“People have different ideas of what sick people are, whether they should try avoidance or pity,” Nye said. “You learn to take care of yourself and I developed a positive nature.”
Nye has since been put on a waitlist for a kidney donation. In California, the wait for a type O kidney is 10 years. The lifespan of a person on dialysis is about 5 years. The waitlist for a kidney in Oregon, however, is only three years.
"People talk about moving to Oregon for the weather, I might move there for a kidney,” Nye said.
Even if Nye were to get a kidney, issues within the health care system make it difficult to keep.
“As soon as you’re on dialysis, you go on Medicare, however, you lose Medicare one year after you get a transplant,” Nye said. “You get off Medicare, you get off your immunosuppressants, you get back on dialysis.”
Immunosuppression involves an act that reduces the activation or efficacy of the immune system. Deliberately induced immunosuppression is generally done to prevent the body from rejecting an organ transplant, treating graft-versus-host disease after a bone marrow transplant.
Treatment
To fend off kidney failure, Nye undergoes the nightly process of peritoneal dialysis, where fluid is introduced through a permanent tube in the abdomen and flushed out every night while she sleeps. PD is used as an alternative to hemodialysis though it is far less common. It has comparable risks and expenses, but on the upside, Nye doesn’t have to get treatment from a medical facility. A major complication with PD is a risk of infection due to a permanent tube in the abdomen.
Nye’s dialysis machine is in her bedroom, which contains her bed, her dialysis machine, air purifier and several dozen boxes filled with glucose solution.
Watching Nye prepare her dialysis is as mesmerizing as it is meticulous. Nye begins by taking her blood pressure to “regulate the fluid balance.” After thoroughly scrubbing her hands with an antibacterial soap, she sprays the “cycler” down with Lysol disinfectant to ensure a sterile environment.
Now it’s time for a second round of scrubbing. This time, she also uses disinfectant wipes on each of her fingers. Her mood resembles some sort of deep meditation — focused but serene. She easily lifts two 5-liter bags of dialysis solution and a single liter of primer that will wash the impurities out of her blood later that night. Between the draining of the fluids in her system and the cycling of the new solution, the process takes 9-10 hours.
Finally, Nye puts on latex gloves and a surgical mask to protect against any other possible infection. She turns the machine on and normally waits for 30 minutes to heat the solution.
“When I change my dressing, I have a surgical mask on and I scrub with antibacterial soap and hydrogen peroxide,” Nye says about her permanent abdominal tube. “Having tape on your body 24/7 for 18 months, it itches and has the possibility of fungal or bacterial infection.”
Nye’s bedroom is unique for one other reason.
“I wanted a dog for companionship, but the dog stays away from the bedroom,” Nye said, keeping a close eye on Rasputin. The dog sits by the door, looking longingly into the forbidden room, mildly intimidated by the air purifier.
Incentive to change
Despite her health issues, Nye still leads an active lifestyle and has offers to continue teaching.
"Just the other day, I got a call from Dominguez Hills asking me to teach, with three days before the semester starts,” Nye said.
But Nye is working to raise awareness about organ donation as part of the Alliance for Organ Donor Incentives.
While The Alliance desires incentives for organ donors, they clearly state on their website organdonorincentives.org, “We are not proposing that private wealthy people should be allowed to buy organs or that money be waved in front of people who are desperate for money. For anyone who needs cash in a hurry, donating an organ under this proposal will not satisfy their need.”
Nye is currently the secretary of The Alliance and does several jobs from her home in order to raise awareness.
"I began tweeting as ‘dialysisdoll,’ posting news items, trying to say something significant in 140 characters,” Nye said. Nye also uses Facebook and maintains a blog, heidisheart.blogspot.com, to promote donor incentives.
“We should treat [organ donors] as heroes, we pay firefighters well for public services, that is something society values” Nye says. “[Donors] are saving lives, this is good for society.”
The journey continues
Nye met Robbie Berman, president of The Alliance, at a speaking engagement in Los Angeles, where he thought she’d be a good face for the organization as she is outwardly very healthy looking, despite being on dialysis. Eventually the two became involved in an HBO documentary about organ donation. It was during the filming in New York that Nye broke her hip and was hospitalized.
“The dialysis makes my bones brittle,” Nye explains. “The doctor in New York told me that if I wasn’t on dialysis, I would have fallen and gotten back up again.”
It was during her hospital stay that Nye tripped and broke her hip a second time. Even with the pain, Nye managed to look at the experience in a positive way.
“It was good filmmaking in the life of a dialysis patient,” Nye said. “We may look bright and vibrant, but we’re frail.”
The filming stopped and has been on hold for several months. Nye has heard that several other people who were involved in the documentary have since died waiting for an organ donation.
A Glimmer of Hope
In Phoenix, Arizona, a woman named Cindy has the type O kidney that Nye would need to get off dialysis permanently. Cindy’s brother received a kidney from a donor and now wants to be a donor herself. Nye and Cindy share one more coincidence, Cindy’s friend is a former student of Nye’s at CSULB.
Despite the astronomical odds that connect Cindy to Nye, there’s still much to be done and Nye remains cautious.
“I had a surgery scheduled with a neighbor [for a donation] but we just missed out with the final cross match,” Nye said, undeterred by the narrow miss. “We always say potential donor, people back-out, there are problems with cross matching. We’re asking people to give out of the kindness of their hearts.”
The two are still trading emails and haven’t yet talked on the phone.
Even if Nye gets a kidney, she says she plans to continue being an advocate for donor incentives.
In the end, Nye sums up her philosophy about life simply.
"It’s more about chutzpah than about health.”
For information on becoming a donor go to lifesharers.com or donatelifecalifornia.org.
Kidney Connections
Since Susie's solicitation letter was sent out, several wonderful things have happened:
* Raul, the department chair at the journalism department, suggested that the student paper run a story about me. The reporter came by last week to interview me and the story appeared on Wednesday. Though there are several inaccuracies and made-up quotes, overall it gets the message across. I'll post the story in my next post.
* At a meditation class I attended this past weekend, I met Alon, an Iranian-born, Israeli-raised man in his 40s who told another student in the class and me something he had not told anyone before: He is going to donate a kidney to his cousin. Alon and I both are working with Suzanne, one of the transplant coordinators at UCLA.
* Best of all, Cindy, a 26-year-old from Phoenix, is interested in becoming my donor. Susie's letter was forwarded to her by her friend Julio, who is a former student of mine. Cindy's brother received a kidney from their sister 15 years ago, and both are doing well. Ever since then, Cindy has wanted to become a living donor. She's an O, and so am I, so this just might work. Cindy and I spoke for the first time this past Saturday evening. She seems really interested, and she said, "Where there's a will, there's a way." She struck me as compassionate, mature, and well-informed. Of course a lot of things could happen to prevent her from donating, and we don't even know yet if we're compatible, but it's a beautiful sign. This is the kind of connection that is made possible by the Internet.
So connections are happening. As I have learned at least two times already, one only has a potential donor until the surgery actually takes place. When Janet said she'd be my donor last August, she was a potential donor because we eventually found out that she is an A and I'm an O. Then this summer, I had surgery scheduled for Aug. 11, but two weeks before, I found out that Janet was not compatible with the other recipient, even though I was compatible with the other donor, so the paired donation did not take place.
All I can do is what is the best thing for anyone to do in this kind of situation or any situation: Do my best and then let go. Be unattached to the outcome. If I receive a kidney, that would be such a beautiful gift, such a great blessing. But if it doesn't happen, I understand that I probably will die within the next few years. I prefer the former scenario to the latter, but I cannot get wrapped up in one outcome or the other. Actually, the longer I deal with health problems, the less I focus on outcomes. More and more, I stay in the present, not in some future is always so much different than any I can imagine.
* Raul, the department chair at the journalism department, suggested that the student paper run a story about me. The reporter came by last week to interview me and the story appeared on Wednesday. Though there are several inaccuracies and made-up quotes, overall it gets the message across. I'll post the story in my next post.
* At a meditation class I attended this past weekend, I met Alon, an Iranian-born, Israeli-raised man in his 40s who told another student in the class and me something he had not told anyone before: He is going to donate a kidney to his cousin. Alon and I both are working with Suzanne, one of the transplant coordinators at UCLA.
* Best of all, Cindy, a 26-year-old from Phoenix, is interested in becoming my donor. Susie's letter was forwarded to her by her friend Julio, who is a former student of mine. Cindy's brother received a kidney from their sister 15 years ago, and both are doing well. Ever since then, Cindy has wanted to become a living donor. She's an O, and so am I, so this just might work. Cindy and I spoke for the first time this past Saturday evening. She seems really interested, and she said, "Where there's a will, there's a way." She struck me as compassionate, mature, and well-informed. Of course a lot of things could happen to prevent her from donating, and we don't even know yet if we're compatible, but it's a beautiful sign. This is the kind of connection that is made possible by the Internet.
So connections are happening. As I have learned at least two times already, one only has a potential donor until the surgery actually takes place. When Janet said she'd be my donor last August, she was a potential donor because we eventually found out that she is an A and I'm an O. Then this summer, I had surgery scheduled for Aug. 11, but two weeks before, I found out that Janet was not compatible with the other recipient, even though I was compatible with the other donor, so the paired donation did not take place.
All I can do is what is the best thing for anyone to do in this kind of situation or any situation: Do my best and then let go. Be unattached to the outcome. If I receive a kidney, that would be such a beautiful gift, such a great blessing. But if it doesn't happen, I understand that I probably will die within the next few years. I prefer the former scenario to the latter, but I cannot get wrapped up in one outcome or the other. Actually, the longer I deal with health problems, the less I focus on outcomes. More and more, I stay in the present, not in some future is always so much different than any I can imagine.
Tuesday, August 24, 2010
The Irony and Poignancy of a Novel in my Own Alley
It's awfully hot today, so I only took Rasputin for a short walk this afternoon--down the block and back home via the alley. As we neared the gate off the alley, we came across a young man sitting in the brambles, holding a brown bag from which emerged the top of a large Miller's bottle. He had a full head of wavy, black hair and beautiful dark eyes. His clothes were worn but not shabby. Definitely the most handsome homeless man I'd ever seen and one of the best looking men I've seen of any kind for a long time. There seemed to be a kindness about him. Unlike the chronically homeless I've often met, his consciousness was not solely fixed on survival.
As he and I exchanged friendly glances and I admonished Rasputin to "be nice," I heard young women's voices singing from the porch of the sorority house at the end of the alley and across the street. I continued to walk toward the back gate, but then stopped to listen before passing into the backyard. The sweetness of their song was so incredibly poignant. It was a song of sisterhood and lifelong bonds. It was a song welcoming new girls into the house.
The juxtaposition of the young man whose only friend appeared to be a Miller's bottle and these young girls singing about the emotional bond between them was overwhelmingly clear to me. I glanced down the alley toward the man and saw that he too was looking in the direction of the girls, no doubt feeling the poignancy himself.
I got some juice boxes and four energy bars from my kitchen, walked back to the man, and said that it was so hot today that I was concerned he'd get dehydrated. He motioned to the brown bag and said, "And this isn't helping." I smiled and agreed that it wasn't.
As he and I exchanged friendly glances and I admonished Rasputin to "be nice," I heard young women's voices singing from the porch of the sorority house at the end of the alley and across the street. I continued to walk toward the back gate, but then stopped to listen before passing into the backyard. The sweetness of their song was so incredibly poignant. It was a song of sisterhood and lifelong bonds. It was a song welcoming new girls into the house.
The juxtaposition of the young man whose only friend appeared to be a Miller's bottle and these young girls singing about the emotional bond between them was overwhelmingly clear to me. I glanced down the alley toward the man and saw that he too was looking in the direction of the girls, no doubt feeling the poignancy himself.
I got some juice boxes and four energy bars from my kitchen, walked back to the man, and said that it was so hot today that I was concerned he'd get dehydrated. He motioned to the brown bag and said, "And this isn't helping." I smiled and agreed that it wasn't.
Monday, August 23, 2010
The Blind Leading the Blind
This past Saturday my friend Bev and I participated in a hike with the blind. I had expected to hold the hand of a sightless person and guide him or her along the trail. Boy, was I wrong!
When I arrived at Newport Bay Back, approximately 25 sighted persons from the OC hiking meetup group, a half dozen blind people, and Bev were already assembled. The leader was Brian Bushway, a gregarious, 30s-ish bear of a guy who freely made light of his blindness. He was a true joy. He and the other "mobility coaches" led the sighted on a three-mile hike, over sometimes steep and rough terrain. They were all faster hikers than me.
Halfway through the hike, some of the sighted persons donned blindfolds and canes to see how they would fare without vision. Some did surprisingly well; others were completely lost. I'm sure this disparity had to do with the person's observation skills. Each blindfolded person had a blind guide who kept the sighted from getting into any trouble with their footing.
The blind were associated with World Access for the Blind, an amazing group that travels the world, teaching the blind how to do so much more than get from the bedroom to the kitchen to the bathroom. These folks bicycle, mountain bike, and play soccer. Amazing!
They employ a technique that allows the blind to picture their surroundings through interpreting the sounds that bounce back to them from their tongue clicking, a form of echolocation.
Though of course I do not even entertain the possibility of blindness, I fully realize that diabetes is the leading cause of blindness in the U.S. I always thought that I would do myself in if I went on dialysis, but now I've been on dialysis for almost 19 months. Now, because of these remarkable individuals from World Access for the Blind, I also realize that blindness does not have to be the end of the road.
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