My New Decor

How do you like my new decor? It's the therapy look. Pictured here is the cycler, the machine I hook up to at night. Also the side table that I used at first, before I bought my spiffy therapy table on wheels, with shelves for surgical masks, gynecological towelettes for cleaning my hands before hooking up; clamps; gauze; hydrogen peroxide; rolls and rolls of medical tape; and a dialysis bag connector.



And here's the collection jug and the container with bleached, white towels that I place on my lap when doing the hook-up so that the transfer set doesn't rub up against my germ-laden attire. One towel per day because any item that sits out collects dirt and germs.



On the days I took these photos, my supplies were tucked under my bed. But when I receive an order of dialysis bags, antibacterial caps for the transfer set, tubing, and all the rest, not everything fits under the bed, and I have boxes stacked in the living room and up against the bedroom walls. I asked for and was granted a bimonthly--rather than a monthly--shipment. Thank goodness because otherwise there would be no room for me inside my apartment!

My Belly Buried Under a Lot of Tape

This is a photo I took of my belly 10 days post-surgery. The swelling has gone down considerably since then, but the bandages and tubing are quite similar.

At the upper edge of the photo is the PD belt, an elastic band that goes about my waist into which I can insert the transfer set (the end of the tube that gets hooked up to the dialysis machine). This keeps the transfer set from dangling and thereby prevents it from getting snagged, pulled, or dirtied.

The warning sign on the post-surgery dressing has been removed. The message shown on this photo says that only a PD nurse can touch the dressing, with numbers at which the on-call nurse can be reached.

But otherwise, this is it, folks.

Perhaps this is how someone who grew a third arm or leg while sleeping might feel. She wakes up in the morning, and there it is--another appendage! It's still all so strange and even a bit creepy.

I have to touch my belly to wash it with antibacterial soap, dab it with peroxide, and douse it with special cream every day, but otherwise, I don't touch it. I used to lie in bed at night and rub my belly. I was so pleased with its shape, its tautness, its size that was smaller than most women's my age, for sure. I really liked my belly.

Recently I noticed the tubing under the skin. Not just at the exit site, but several places, as if a foot or more of tubing is coursing its way just under the surface.

This marks a completely new stage of my life. Before, I slept alone every night, but I sure looked like someone who should be sleeping with someone. Nobody was with me, but damn if I didn't look like a woman who should be having great sex every night! Every once in a while, I would stand before a floor-length mirror in just my skivvies and smile, thinking of what I would love to have a lover doing with me.

But now when I do look in the mirror, I look from the breasts up.

It's just really difficult to accept that from now on until the day I die, there is so little hope of a relationship. If no one of interest to me was interested before, why in the hell would someone be interested now!

And it's not just the PD paraphernalia either. It's the insulin pump, shown here in the black case I can slip it into and then clip to my belt or the top of my skirt. Otherwise, I stuff it into a baby sock and nestle it in my underwear.



At least with the insulin pump, I could remove it if I didn't want a "date" to see it. The site is changed every three days anyway, so I could just remove the infusion site, the tubing, and the pump for the duration of the "date." My blood sugar would be a little high afterward, as I wouldn't be receiving the 20-times-an-hour mini-infusions of insulin, but I could correct for that by giving myself a bolus post-date.

But there's no removing the catheter. It's lodged into my mid-section and would require an extreme yank to free it. Just thinking of this gives me a shiver.

So all of this is why I wonder, Even if someone were interested in approaching me, however could he manage that?

Dialysis is Easy, Like Prison and War

I spoke with someone yesterday who closed the conversation with "I'm glad dialysis is easy." This is a classic case of confusing a good attitude with a good situation.

Just because I'm not crying on anyone's shoulder or voicing any complaints doesn't mean this is easy. Two men who were very interested in me before they knew I had started dialysis are now not returning my calls. Many friends have written me off, figuring, I suppose, that I'm on my way out, so why bother. My opportunities for social engagement have been severely curtailed due to the time constraints of dialysis and doctor visits. And I wonder if anyone will ever want to touch me again, and even if someone does, how is he to do it without interfering with my tubing or contaminating my exit site?

So, yes, dialysis is easy in the same way that prison and war must be easy: You have to learn to cope because not coping just adds another layer of woe to the situation. Accept or die. Those are the options.

Decoration in the Lives of Others

What I am to write here is not a new idea. Truly, I have wondered about this for many years. It's just that I feel it quite acutely right now.

We are all mere decorations in the lives of others. There, I've said it. I'm sure that many will protest, claiming that they care deeply about many people. But they're not being honest with themselves or with others.

I write this, not as a cynic, but as an observer of human behavior. It is no less cynical than if I were to write "We all will die." This is a statement of fact, and saying otherwise is tantamount to denial.

What I mean by "decoration" is that we decorate the lives of the people who know us. We make their lives more colorful by association with us. They may appreciate us for our tennis skills or our adventuresome spirit or our talent for flying kites--or our damn good attitude when faced with kidney dialysis. We are a decoration that adds to the color of the other person's life. He or she can then tell others, "Oh, yes, my friend Kelly is a fantastic tennis player" or "My neighbor Lester just returned from a three-month trek through the Amazon" or "I know the national kite-flying champion" or "My friend Heidi is on dialysis."

There's nothing fundamentally wrong with this. It's actually quite lovely that we appear on stage and give our performances and that others are amused. Kind of like Burning Man, yes?

Most people fall into this category of decoration. We realize on some level that they have their lives and their significant others and that we are somewhere on the periphery. We are not central to their existence. I mean, how could we be? However could we be central to the lives of all those who know us!

We are not the Christmas tree, but one of the decorations. If one of the glass bulbs breaks or is lost or stolen, the tree remains. The bulb is replaced--or not. Some trees have more decorations, others fewer. But the decorations are not the tree.

In contrast to the decoration people are the few, rare tree people. If we're lucky, we have perhaps one person who cares about us in a daily, ongoing, substantial way. If one is exceedingly lucky, that person is a life partner, a lover, and a best friend wrapped into one. Someone whose life is entwined with yours. Someone who loves you in a selfless, lay-down-his-life-for-you kind of way.

Sometimes, I'm sure, this person is a friend, but this kind of friend is exceedingly rare in our society. This would be someone you've seen every day of your life, who lives in the same village, went to the same school, married your cousin. Someone who was there with you when you went off to war, who served by your side. Or someone who helped deliver your babies, and you in turn helped deliver hers. Someone who was there when your grandparents died, and held you as you wept when your mother, father, sister, or brother died. A friend of gold, as Aristotle said, not a friend who has a shared interest and when the interest is no longer there, the friendship ends. No, this is the type of friendship, the philosopher wrote, that consists of two bodies but one soul.

I've long known that the person who cares about me in a fundamental way is my son, and I, of course, care for him. But I've also known that he has his life to lead, and most likely he will be off to graduate school in the fall, in New York or Boston or San Francisco or some other city.

And that's why I've always wanted a dog. Unfortunately, I've always lived in an apartment in which dogs are not allowed. A dog loves in an always-there-for-you way. You are never a decoration for a dog.

But now that path seems closed off to me, as a dog increases the risk of infection, and a dog may jump up and tug at my tubing. Yikes!

Every time I see a dog now, my heart aches a bit. How I would love to have its affections! I could really use some unconditional love right now from a four-legged creature who couldn't care less about tubing and a catheter. Who would see those as decorations and not as the tree.

Yet Another Bout with Death, late 2007

The following post was first published some time in late 2007:

Once again, I have been plucked from the hands of death. Not more than an hour ago, I was slipping over to “the other side,” but for the 200th or so time in my life, I was spared.

As an insulin-dependent diabetic, I often walk that line between life and death. Though elevated blood sugar wrecks long-term damage, such as heart and kidney failure, it is the low blood sugars that are the most worrisome. When my blood sugar dips, fuel is not getting to my body, and my brain shuts down too. My response varies greatly, from paranoia to an oppressive feeling that everything that is transpiring in the world is somehow my doing, my fault. When my son is with me during an insulin reaction, I often revert to the emotional wherewithal of a preschooler, whining that he is going to abandon me when he runs off to find some orange juice or chocolate to give my sugar a boost.

Sometimes I lose consciousness, as I did at Hof’s Hut a few years ago. I had taken my shot before walking the mile or so to the restaurant with my son—definitely not a smart idea. The place was packed, and so our meal was delayed. While waiting for the food, I dipped into insulin shock, becoming hostile when Aaron tried to get me to drink some orange juice, then collapsing into my bowl of soup. Aaron summoned paramedics, who gave me glucose intravenously, as I was unable to swallow. One clear sign of low blood sugar is my biting at orange juice while it spills out of my mouth, unable as I am to negotiate the simple act of swallowing liquids.

Sometimes low blood sugar hits me in the middle of the night. These are especially dangerous times, as I’m asleep and I live alone. So many times I have awoken to find my nightshirt, my sheets, and my pillows drenched in sweat, literally dripping in sweat. No, not perimenopausal drippings. Not even digging-a-trench-on-a-100-degree-day sweat. This is a sweat like no other. An adrenaline sweat. A this-could-be-my-last-moments-on-Earth kind of sweat. In one last ditch effort, my body is crying out for help, and its tears are this sweat. Wake up, Heidi! it’s screaming. Do something quick! There have been times when I’ve rolled back to sleep—not a good thing. Always, during these shadow moments when who I am is dissolving and I feel myself fading into another realm, something-I-know-not-what speaks up from inside me and shouts, Get something to eat! This aspect of self or of Self comes to the fore and takes charge. I stagger into the kitchen and find some juice and somehow get it into my mouth and down my throat. Once, during a middle-of-the-night plunge into darkness, I was so uncoordinated that I banged into walls, cutting my forehead and calves, and leaving a trail of blood on the carpet on my frantic trek to the refrigerator.

When I was pregnant with Aaron, my blood sugar once dropped so low that my then-husband came home from work to find me slumped against the living room wall, one eye staring upward, the other sunk downward at the carpet, unable to tell him my name. When the paramedics arrived and checked my blood sugar, it was 10, an insanely low level, as normal is between 70 and 140, and I begin feeling symptoms of low sugars at 65. Even though it was a hot summer day, I was shaking with cold. This was the first of five emergency-room visits during my pregnancy.

Last weekend, Aaron and I visited the South Coast Botanical Gardens. While walking the grounds, I began to slip into insulin shock, reverting to a scared, uncooperative two-year-old. After he somewhat revived me with one of the glucose tablets I keep in my purse and a slice of baklava I had squirreled away, held over from lunch, I marveled at the rock about 50 yards away. In my mind, I had been standing or sitting near that rock and had no conception of how I had walked from there to where I now stood. These are the space-time rifts I enter during insulin shock.

So, this morning was just such a brush with death in a long, long history—35 years to be exact—of brushes with death. I had gone downstairs to take out the garbage. In the courtyard I encountered Al, the manager. Every time I talk with him, he tells me of people he has threatened with bodily harm and of his Vietnam days. This time he went on about his bad-ass motorcycle-gang days in which he “didn’t kill no one, just bust up a bunch of bars and cars and took swings at a few cops.” After I had extricated myself from Al, I walked up the stairs to my apartment. Here I was given my first warning sign: I felt dizzy and had trouble walking.

I tried to write an article whose deadline is fast-approaching, but I couldn’t seem to get out the first word. I went to lie down—usually something I would consider shameful at 10 in the morning. I lay there, floating in and out of coherent thought, as a vague feeling of oppression descended upon me. Yet from some deep place within my soul emerged that saving voice: You need something to eat. I managed to push the covers off my legs and stumble into the kitchen, clutching the walls to steady me. I checked my blood sugar: 43. I looked in the fridge. Not much there. I began whimpering and whining, even though Aaron wasn’t there. I was becoming a small child and yet I knew I had to take care of myself—something the child definitely resented. Help me! Help me! I demanded like the scared little girl that I was. Please help me! I couldn’t find any juice or anything sweet besides a little bit of jam at the bottom of a jar. I spooned it out and wolfed it down. But I needed more. I grabbed a piece of bread and gnawed at it, crying and complaining like a frustrated child. The thought came to me that usually comes to me during these times: I’m dying. This is the last. Just lie down and pass over. But there, too, was that other voice, prodding me to eat something more, to pull through.

Because I am writing this, it is obvious that I did pull through. Once again. And this time, like all the other times, I said thank you afterwards. Thank you to that part of me that resisted the pull of death. Thank you to that voice deep within me, the voice of God (?), that wants me to pull through. Through these private, mostly solitary, bouts with mortality, I have come to know the divine in a way that few others can know. When all else is stripped away, when even the ground of my little self, my personality, is gone, something remains—life itself, calling to me to continue to live, again and again and again.

Another Heart Attack, January 2008

The following post was written in late January 2008. I removed it from my blog, along with a few other health-challenges posts, thinking that it might work against me, should I ever apply for a job and someone spot this information online. Now that I am fairly certain I will not be applying for any jobs--chosing instead to freelance once again after I leave Cal State--I thought I'd make these posts public again.

On Thursday, some time on Thursday, I had another heart attack. Yes, I'm such a trooper with such a high tolerance for pain that I can't say exactly when it happened.

All day I had been having chest pain, but it was not bad enough to complain about. Occasionally, I would rub my chest, which always helps a bit, but I went on teaching and even at one point got on my soapbox to decry the loss of civil liberties and the dearth of presidential candidates who seem even remotely concerned that the First and Fourth Amendments to the Constitution are virtually null and void.

That evening I met Michelle, a former student, for dinner at Hof's Hut. By then, I was feeling pretty awful. My blood sugar was way off the scale, somewhere over 600, as my blood monitor doesn't register anything above that level, only flashes HIGH BLOOD GLUCOSE. I had changed my insertion site that morning, but I guess the pump wasn't delivering any insulin and maybe hadn't been delivering any all day. When the insulin pump works, it works great, but when it doesn't work, it really messes things up.

I really didn't feel like eating. I was extremely weak and tired and sick to my stomach. But Michelle was hungry, and I didn't want to be a spoil sport, so I ordered a dinner salad. I picked at it a bit, then things turned from bad to worse. I felt an immanent purge coming on, grabbed a few napkins, hastily excused myself, and managed to contain most of my barf in the napkins as I rushed to the ladies' room. Michelle followed.

She asked me if she could do anything. From my compromised position, kneeling before the bowl, I managed a chuckle. "I guess you've seen worse than this in the military," I said to a woman who served in Afghanistan. She admitted that she had.

Michelle offered to take me to the ER, but I thought what I was experiencing was merely high blood sugar, which produces ketones that act as a poison to the system and can cause vomiting.

Once home, I called Mary Kay, a very dedicated, call-me-any-time-of-the-day-or-night diabetic nurse. She said it was crucial that I drink plenty of fluids and try to keep them down. I also took massive doses of insulin via a syringe because the pump was obviously not doing its job.

Still my blood sugar remained high--587. I called Tom and asked him to bring over some sugar-free ginger ale. By the time he arrived, I was so weak I could hardly move. Time to go to the ER.

I kept telling the intake nurses that I needed an IV and something to drink, but all they did was give me test after test--EKG, urine, blood pressure, temperature. Finally, after almost three hours, they gave me an IV and I began to stabilize. It was only then that I found out that, because of the elevated level of the heart enzyme troponin in my blood, I must have had a heart attack.

I stayed in the hospital until Saturday evening. Right now, I'm feeling fine. I'm able to walk and make my bed and do everything I need to do. Once again, I experienced a medical drama, but, thankfully, once again, I bounced back quickly. Another lease on life, another chance. Thanks so much to all forces and beings who are watching over me.

More Pleasures

Here are some more pleasures in my life. As these are also things I'm thankful for, this can also be seen as a gratitude list, incomplete, of course. A work in progress.

* sunshine, definitely sunshine
* a smile from a stranger
* black velvet gloves that feel so good and keep my hands warm
* fresh flowers--what a treat!
* blueberries
* mangoes
* a sweet, juicy orange
* good writing
* National Public Radio
* holding a pillow against my chest as if it were my lover
* rubbing my legs against flannel sheets
* a meal with The Son
* a hug from The Son
* watching "The Wire" with The Son (We've rented the entire four seasons of episodes from Netflix.)
* gazing upon my cacti collection on my back porch
* acupuncture appointments, especially the acupressure massage Dr. Mai gives me after he removes the needles
* birdsong
* being able to walk, climb stairs, do housework, and get dressed without panting, without having cardiac symptoms--the pleasure of doing simple things effortlessly

The Pleasure of a Cup of Tea

Even as I wrote my last post, I knew that taking a shower is hardly my only pleasure. Not by a long shot.

Right now, I'm indulging in one of my favorite things: a cup of tea, preferably Earl Grey or English breakfast. This is the latter.

It's not just the tea itself, it's the sensual pleasure of holding the cup, the heat from which warms my often-chilly hands. It's also the tent I make with my hands over the cup. I then breathe into the tea and create a mini-sauna. Ah!

All this warmth makes me feel loved. It's a cozy feeling, a deep comfort, like I'm sure it must be to share a quilt with a lover, snuggling and rubbing tootsies and noses together. I've never had this experience, but I'm sure it must be wonderful. Placing a hot cup of tea against my cheek must be something like this cozy, homey, smiling-on-a-rainy day sort of love. Until that fairy tale comes true, a good cup of tea gives me the sensation of that tender sweetness.

My First Shower in Almost Three Weeks! Yippee

Yesterday, John, my PD training nurse, gave me the go-ahead to take a shower--my first since my surgery on Jan. 30.

In the weeks since surgery, I have washed my hair while kneeling before the bath tub or dunking my head with water poured from a cooking pot over the bathroom sink. Then I've sponge-bathed the rest of my body. This has been quite time-consuming, and I have had to allow for an hour and a half to shampoo, bathe, dress, and do all the tasks associated with dialysis clean-up and record-keeping each morning. Now, thank goodness, with a shower, I'll cut some of that time and effort.

But much more than the saved time and the increased convenience of a shower is the pleasure of the experience.

Taking a shower is one of the few sensual pleasures that is left to me.

* I don't smoke, take illegal drugs, or drink alcohol.

* My diet is restricted: I must avoid sweets, processed foods, dairy products, nuts, colas, and certain fruits and vegetables.

* Now that I'm on dialysis, travel is not completely impossible, but it will certainly no longer be spontaneous. (The supply company must be informed two months in advance of a domestic trip and at least three months in advance of an overseas trip, so that supplies can be delivered to my destination. And then there's all the surgical masks, cleaning supplies, towelettes, bleached towels, clamps, and other paraphenalia that I must pack. And beyond that, I have to be fairly certain that I'm conducting dialysis in a mold-free, clean space.)

* Intimacy, romance, companionship, and love seem even farther away than they have been during the rest of my life. I'm not even sure how a man would get physically close to me with all the tubing, tape, transfer set, and insulin pump that is around my mid-section.

So, taking a shower is one of the joys that is afforded me. I am so thankful to have a daily, hot shower back in my life!

John Updike Heard Me Read my Poetry

John Updike died on Jan. 27. I know this is old news, being that today is already Feb. 16. But what I have to write here is very old news, some 20 years old.

Back in the mid-1980s, when I was in my heyday of performance poetry, I was a featured reader at a venue on Broadway Avenue in Long Beach. As I recall, perhaps 40 people were present.

Halfway through my impassioned reading, a tall, thin man entered and stood at the back of the room, listening intently for a few minutes, smiling, and then quietly leaving. Damn, he looked familiar! But I was concentrating on my performance, giving it my all.

After I left the stage, my fellow poet and friend Don Gross told me that John Updike had popped in.

My brush with literary genius.

More Kindness

During peritoneal dialysis (PD) training last week, I was a bit distraught because my stomach had swelled on account of surgery and I couldn't zip up any of my skirts. I quite literally had nothing to wear except an elastic-waist black velvet skirt.

I moaned about this state of affairs to Marlene, the PD social worker, and Gina, the dietician. The next day, Marlene called me into her office to show me a half dozen skirts she had weened from her closet. She had gone through her things and picked out six very nice skirts for me--one wool, the others non-clingy polyesters that didn't reveal the lines of my tubing. They were beautiful! I tried them on, and all but one looked wonderful.

Gina later pulled me aside and gave me a black skirt.

I was so touched by the generosity of these two women.

Though my stomach swelling has subsided and though I have lost a lot of water weight, much of the clothes in my closet fits tightly and so the outlines of the tubing and transfer set show through. These six skirts helped me feel pretty again and increased my confidence. Such a blessing!

Thank You, Doctors

I took this photo in late June 2006 on my month-long solo camping trip up the coast and then inland to friend Araia's place in northeastern Washington state. I had gone berry picking with her friends. Afterward I took a walk through the orchard and felt as if I had entered a magical world of dappled light.

More than any lab test or clinical marker, this photo reveals the current state of my health.

It is as if I have been walking in a dark woods for a decade, struggling with one obstacle after another, and then all of a sudden, sunlight breaks through the branches and another, incredibly lovely world appears.

The path ahead is indistinct, but infused with a delicious magic, like the rain-soaked tree I beheld this afternoon--thousands of drops twinkling in a shaft of light, like Indra's net.

I have sent this message, via a handmade card with this photo, to my nephrologist, Dr. Michael Butman, closing with "Thank you so very much for all that you have done to make this opening possible. I am deeply grateful." And I will do the same for my cardiologist, Dr. Michael Phan. Both these men have shown great kindness and concern, and have spent extra time talking to me during office visits about my misgivings. When people bad-mouth Kaiser Permanente, they obviously have not experienced the quality care that these physicians have given me.

I Have a New Heart!

After a decade or so of varying degrees of constant chest pressure and pain, I have been totally cardiac-symptom-free since beginning dialysis. This is nothing short of a miracle, and I am ecstatic!

After years of struggling with stairs, huffing and puffing after dressing in the morning, feeling exhausted from vacuuming or walking around the block, after years of this every day, day in and day out, and through the night as well, I walked a mile today. I even passed a young man on the sidewalk, left him in the dust. Then I topped it off by climbing 10 flights of stairs with ease.

As I told nephrologist Dr. Michael Butman this afternoon, "I haven't felt this good in 10 years. Well...except for a few really fantastic kisses. But then it wouldn't be fair to hold dialysis up to those standards, would it?"

He smiled and concurred, "It's only a machine, Heidi."

The New Meaning of "Hook Up"

Strange how the term "hook up" has taken on a whole new meaning lately. In modern parlance, it is a rather crude way of saying that one has quite literally hooked up, put one's genitalia into another human being or vice versa. Dogs clamped together in the sex act.

I am now hooked up every night. But not with a sex partner. With my dialysis machine. It pumps fluid in and out of my body for 10 hours every night. Can any man do that? Hmmmm...I doubt it.

And it is not a casual hook-up. No, indeed. It is a life-and-death embrace, the stuff of true passion. At least as I've always envisioned it. Intense passion for me--and I haven't had any intense passion for almost a decade--entails a little hint of death, a bringing of two bodies to the abyss coupled with an explosion of light. The play of darkness and light, death and life, pain and pleasure. This is the stuff of the kind of hook-up that few people, I'm sad to say, have known. This is also the stuff of what I am experiencing, hooked up to a machine that pumps clean fluids in and extracts toxins, but also takes its toll as it robs my body of protein and electrolytes.

I don't have a valentine this Valentine's Day, as I have not had one for almost 30 years. Yes, 30 years without VD flowers and affection from a man with whom I am romantically entangled. None of that this year either, unless some miracle crosses my path. But I will be hooked up. You can bet on that.

One in a Million, or Close Enough

In 2010, an estimated 129,000 Americans will be in end-stage kidney disease (ESKD), receiving or in need of dialysis. Of those, less than half will be undertaking peritoneal dialysis, opting instead for the more commonly known hemodialysis.

At the Kaiser Permanente facility at which I receive care, only about 130 patients are on PD. The nurse told me that in Southern California, there are no doubt thousands of PD patients.

Thousands may sound like a lot, but not in such a populous area.

Taking the 129,000 figure above, ESKD patients make up only .04 percent of the population, figuring a total U.S. population of 304 million. PD patients probably account for no more than .01 percent of the U.S. population, so I am one in 10,000.

If you also factor in coronary heart disease, at least two heart attacks, and juvenile-onset diabetes of 37 years, we're probably getting close to one in a million.

I always wanted to be one in a million, but I sure wish it was for something other than this.

There Goes my Carbon Footprint!

For as long as I can remember, I have bought most everything I own from thrift stores and yard sales, reused instead of bought new, and recycled as if my life depended on it. What's more, I have lived in the same town in which I work, thereby saving lots of gas. In short, I have had a very small carbon footprint.

Until now.

Last night I hooked myself up for dialysis for the very first time. I received emergency dialysis in the hospital this week and in the dialysis training center, but this was the first time I did all the set-up and hook-up by myself without the supervision of a medical worker.

What a sack of garbage I now will generate every day! The plastic covering on two or three dialysate bags, the bags themselves, the six lines of tubing, the infusion set, the numerous paper towels and towelettes used to clean my hands, the surgical mask, tape, and the packaging for the anti-bacterial caps that cover the head of the end of the line from my body to where it connects to the tubing. All told, a trash bag full of non-reusable medical waste. Add to that the cardboard boxes--each one holding two dialysate bags. At least these can be recycled.

The Abdominal Muscles Do it All

In my last post, I wrote of how change brings about learning. Well, here's a case in point: If not for this surgery, I would never have appreciated all that the abdominal muscles do.

Is there any activity they are not involved in? From the pain and discomfort I'm feeling at every move, it sure doesn't seem so.

Bending, pushing, pulling, lifting, carrying, twisting, turning. reaching, steering, walking, sitting, standing, lying down, getting up, coughing, sneezing. All involve the abdominals. Even laughing, hence, the term "belly laugh."

Nothing Wholly Good or Wholly Bad

Nothing is completely good or bad. This isn't a new concept. Certainly Buddhism has taught this for many, many centuries. It's just that this truth has been made clear to me in so many ways lately.

First off, on the way to London, I read a book about the Black Plague. "What good could come out of something that wiped out a third of Europe?" you might wonder. Well, actually some surprisingly good things resulted:

* Because the plague created a labor shortage, serfs were in a better position to bargain with landowners and thereby improved their living conditions.

* A higher percentage of men died than did women. (Wait now, that's not the good part! I'm getting to it.) Since there were fewer male heirs, women were able to inherit property. Some women became quite wealthy in the process and were known as dowagers.

* Some smart and lucky peasants were able to buy land cheaply that had either been abandoned by families decimated by the plague or that had to be sold quickly to pay mounting debts. Such upward mobility created a fledgling middle class.

* Jews, who were in many areas of plague-ridden Europe accused of poisoning wells and thereby "creating" the plague, were persecuted and killed. (No, once again, this is not the good part!) They fled these regions for Poland, whose king welcomed them. There they established a vibrant culture.

* The modern-day descendants of those who contracted the plague but survived do not develop AIDS upon exposure to the HIV virus.



So, if something as horrific as the Black Plague can result in all those positive occurrences, certainly good can result from the way my life is turning.

In the eyes of the world, and certainly in the eyes of nay-sayers and pessimists, the good does not outweigh the bad. But this is narrow thinking. If life is about change, growth, and learning, then those forces that promote change, growth, and learning are those that are beneficial. And there's nothing like hardship to shake things up, force one to mature, and jumpstart learning.

Besides, so far, the whole dialysis thing--which actually won't start for another three or four weeks--has already brought about some good:

* Aaron and I have had some heart-to-heart talks about the possibility of my death and how hard it is on him to see me, year after year, getting worse, with occasional blips of improvement, followed by crashes.

* I have learned who are my true friends, as many have not contacted me, not responded to my emails or calls. Others have been quick to offer prayers, support, and kind words.

* My ex-mother-in-law, who for most of the time I've known her, somehow never thought I was good enough, always let me know that whatever I did was wrong, is now very kind to me. She has taken care of some of my mother's remaining possessions in Wisconsin, and she and I have had very pleasant phone conversations. This turn is beautiful to see.

* And once I finally leave Cal State, something I absolutely will do at the end of this semester, will be a positive move. I just know that in my bones. Cal State has treated me so shabbily for so many years. It will be such a relief to be free of that place. And dialysis is pushing that leave-taking to the forefront.

I'm sure other good things will come of this. Of course, I hope it goes without saying that this is most definitely not the path I would have preferred. I would much prefer to be completely healthy, in a wonderful relationship, living in a stunningly beautiful place, seeing my creative ventures come to life and make me a good living, traveling the world, having a vibrant circle of friends who are nearby and accessible, and living with a loving dog, and, of course, maintaining my joyous connection with my son.

But my life is changing. And with change comes growth and learning. I have moved into the final stage of Kuebler Ross's grieving process--acceptance. I accept what is to come. What other choice really does one have? Complaining gets you nowhere, so why go there?

Trading One Malady for Another

Last night I slept the best I've slept for as long as I can remember. What a blessing! I've had a lot of really rough nights--shortness of breath, chest pain, diaphragm pain. Well, there was none of that last night. Hallelujah!

I then made an observation: Often one malady has been traded for another.

During my early childhood, for example, I had severe asthma. As soon as I was diagnosed with diabetes at age 13, the asthma disappeared.

More recently, the chest pain I have felt almost 24/7 for many years has subsided and some days I don't feel it at all. It's replacement: discomfort, aching, and stabbing pain in my diaphragm.

And the nasal congestion that has made lying prone and breathing, especially at night, very difficult for the past two months suddenly disappeared. A nurse said he was adding antibiotics to my IV yesterday. That must have been some powerful stuff because it knocked those little buggers right out of my system. Thank you, thank you, thank you for that! But of course the trade-off for that blessing is a catheter in my abdomen.

Perhaps the lesson is that nothing is wholly good or bad. There is the hint of a dark cloud in a sunny day. And always a silver lining around a cloud.

General Anesthesia Has Greatly Improved Since I Had my Tonsils Removed

Boy, has general anesthesia made some leaps and bounds in the last 44 years! I was expecting the same sort of scary experience I'd had when my tonsils were removed when I was six years old.

I remember so clearly how I saw the doctors surrounded me in the operating room, I seemed to be seeing them through viscous water. They told me to count backwards, and I began falling in a spiral down a long, dark tunnel. Creepy!

Well, that isn't how it happens today. I was wheeled into the pre-op room, and something must have been put into my IV. I fell asleep without any of the foreplay that usually accompanies sleep--no strange, dissociate thoughts and images, no feeling of drifting. No, it was simply lights out.

I awoke two and a half hours later, wondering when we were going to get this show on the road. Then my right hand rested on my abdomen, and I felt the catheter. The operation was over!

I had no recollection of being wheeled into surgery. I never saw the operating room or the surgeon or the surgical nurses. I had no sensation of the tube being put down my throat (though currently I have a sore throat). And to really confuse me, they put me back in the same bed slot in the pre-op room, which also must be the post-op room.

When people have an alien abduction is must be something like this. You go to sleep in one spot, you have a bunch of missing time and evidence that something was done to you, and then you're dropped back into your normal life.

I'm certainly NOT complaining, as this was a vastly better experience than the tonsil one. It's just that it was totally unexpected.

No Loose-Fitting Clothes--What to Do?

The night before surgery, I looked long and hard at the clothes hanging in my closet. My surgery instructions recommended that I wear loose-fitting, comfortable clothes that would not rub against the bandaging. That was a tall order as all I have are clothes that actually fit nicely about my trim frame. Suits, dresses, blouses, pants--none of them loose.

The only thing I could come up with were black scrubs. I had once worked as a massage therapist at a day spa that required workers to wear only maroon or black scrubs. After I quit, I began using them as PJs.

When Aaron saw my outfit, he quipped, "Is that how you're going to make your escape?"

He's so quick and so funny. "I don't know if that will work," I said. "The doctors wear light blue, and the nurses generally wear ones with goofy prints. Besides, when is the last time you saw a slim nurse?"

Looking Cute is so Damn Important

The dear son took me to the hospital yesterday. A few friends had volunteered, but when I found out that I had to be there by 5:45, I figured only a next of kin would be truly willing.

I'm so glad he was there. He held my hand and told me that he was always thinking good thoughts about me, praying for me. He told he loved me and that he hoped that the surgery would go well, that dialysis would help me feel better.

Best of all, he was there when they put in the IV. Oh, how I hate IVs! That is one of the prime reasons why I didn't opt for hemodialysis.

At one point, I gathered up my IV pole and headed for the bathroom. When I returned I engaged in the silly banter that is part of the mother-son bond I share with Aaron. I smiled and told him, "You know, Son, I just looked in the mirror, and I want to tell you that your mom is pretty damn cute. Even without makeup, even stressed out and feeling lousy, even without sleep the night before surgery, I still look pretty cute....And that's important!"

My Hysterical Mom

Last week I took my mom out for lunch twice. I knew I wouldn't be up to seeing her after surgery and I figured this would make up for her time alone. Instead, she pestered me about why I wouldn't be able to see her. So I did what I have promised myself not to do so many, many times in my life: I told her crucial information about my life. As always, this was a bad idea.

I said it as simply and evasively as possible: "I'm having surgery on Friday, so I won't be able to see you for a while. I'm not sure how long." What a huge mistake! I should have lied, told her I had so much work, that I'd be working nights and weekends too. But, no, I had to tell her the truth! I've never been comfortable with lies. This would have been an excellent time to perfect that skill.

These few words set off days of hysteria. I exaggerate not. Hysteria. Like a heroin addict who needs his fix. Like a psychopath on a murder spree. Hysteria.

My mother began calling 10, 12 times a day, always whining. Always saying something crazy like, "Call me back! I need to talk to you!" Or: "I'm waiting, I'm waiting for your call!" Other even more insistent, more incomprehensible stuff. Always at a frenetic pitch. She called my land line, my cell phone. She called Aaron multiple times at work. Worst of all, she called 10 times in the middle of the night before my surgery. Calls at 1:30 a.m., 1:35 a.m., 2 a.m., on and on like that, all night long. We didn't answer any of them, knowing who was making them.

And just hours before this barrage, I had talked to her, told her in no uncertain terms that I was so incredibly sorry I had said anything to her, that this had been such a stupid mistake on my part.

I could never stand her theatrics, but in the state I was in, with all that is going on and then to have a hysterical, needy, self-absorbed mother on top of it, I said, "Mom, if you were really concerned about me, you would be calm and supportive, not hysterical. Instead of aiding my health, you are working to destroy my health. Besides, you are not concerned about me. You're concerned about yourself. If I die, you wonder who will take care of you. It's about you, Mom."

And after being so clear about how she is stressing me out, what does she do? She calls 10 times in the middle of the night to make sure that I don't sleep a wink before my 5:45 a.m. surgery.

Do People See Me as a Freak?

Just as I was feeling OK about the whole dialysis thing, a friend's boyfriend said that I must feel funny at work, that my co-workers must think of me as some kind of freak. And wouldn't it be better if I just removed myself from that situation and quit work, went out on disability? "I'm sure you'd rather not have them always looking at you like you're a freak," he said.

I think that, in some twisted way, he meant to offer support through his comments. The thing was I hadn't been thinking of myself as a freak, and I hadn't considered that others looked at me that way--that is, until he said this.

But maybe they do. Maybe already in their minds they have relegated me to the almost-dead category. That I am no longer worth bothering with because they think I won't be around much longer and, even if I am, do they really want to associate with someone who has to add and remove fluids from her body four times a day through a tube permanently implanted in her abdomen?

Of course, everyone adds and removes fluids from the body many times each day. But somehow doing it quick and easy over a toilet is different.

Who knows what people think. If the truth be told, I'm sure that there are plenty of people who have thought I'm a freak even without knowing anything about my medical challenges.

But I do know what I will do the next time Daryl or anyone else brings up freakiness: I'll tell him straight on that, that's not the way I think about myself.

At This Time Tomorrow

At this time tomorrow I will have already completed surgery. I'll probably be in the recovery room by 9 a.m.

Although the heavy-duty emotions regarding dialysis have subsided--I'm no longer crying about it or waking up in the morning with my very first thought being dialysis--I still find the prospect of having a permanent catheter in my belly a bit daunting. It's as if I had been told that tomorrow I will die, even though today I'm walking about, enjoying the sunshine, acting as if tomorrow is such a long ways off.

I guess it just doesn't quite seem real yet.

I'm not looking forward to being under general anesthesia either. Only once before did I experience this--as a 6-year-old, when I had my tonsils removed. I remember so clearly the sensation of falling down a dark tunnel, not at all what I feel when I naturally drop off to sleep. I also remember the drawing I colored just before surgery--a multi-colored spiral. And I recall all the popsicles I was given afterwards.

Perhaps this time I'll have a more pleasant experience. Perhaps Archangel Michael and his minions will appear, as they did on April 1, 2000, on the other side of my back fence, in all their heavenly glory. Michael stood front and center, and around him and to a vanishing point behind him stretched God only knows how many glowing beings, the uncountable ones at the archangel's command. He was a bad-ass dude, someone you would not want to cross, someone you would want by your side, as your protector. I could see how he might draw a line in the sand with his sword and say to the devil, "This far and no farther." Not at all like the effeminate angels that are usually portrayed in art. (The image posted here is the closest I could find to how the archangel appeared to me, but even this image is a bit swishy, especially in the softness of the face.)

With dark skin or maybe just a great tan and bedecked like a gladiator without the helmet, Archangel Michael looked at me straight on, peered into my eyes and into my soul, and said, "The strength that you see within me is there inside of you." I sure could use that kind of pep talk again.

Feeling Lousy and Wondering What to Do About It

I continue to feel lousy. Not that I haven't felt lousy for a long, long time. Almost a decade. It's just that it gets more and more difficult to put on a strong front.

Through continuous chest pain, which I have experienced since 1999 or thereabouts, I have generally projected a positive, everything-is-fine outlook. Now with fatigue, shortness of breath, nausea, and constant pain in my entire mid-section, especially over my kidneys, it is getting harder and harder to smile and carry on as if nothing's wrong.

Today while teaching class, I was out of breath. Just from walking about the room and writing things on the board. And all this is prior to surgery!

When the surgeon asked me yesterday if I needed a note for my employer, I told him that I planned to return to work the Monday following surgery--three days afterwards. He said that most people take the entire month off. He then said something like, "There's nothing like surgery to help you understand your limitations."

I have always pushed myself, never wanting to take the easy way out, as most Americans these days are wont to do. But I just don't know how all this is going to shake up. I mean, I've only taught two class sessions--one yesterday, one today--and I'm already exhausted, ready for the semester to end. But the end is not until the end of May! Can I really muddle through?

What I Want to Say to the Surgeon

Tomorrow morning at 8:30 I have the pre-op appointment with the surgeon. This is what I'd like to say to him:

"Please take a good look at my cute, little belly. It's a beautiful belly. No folds of fat. No rippling cellulite. It's such a pretty, little belly. Please look at it. See how pretty it is.

"I'm asking you to go easy on it. Mangle it as little as possible. When you're done, I need to be able to look at it and say, 'Yes, some day a man will want to touch my belly, will want to rub it and say how pretty it is.'

"You need to give me some hope, some hope for the possibility, however remote, that I won't be a freak. Can you do that? Can you do that for me, please?"

*****************

I just took some digital photos of my belly, and they aren't as cute as the real thing, so I'm not going to post them.

Make the Pain Go Away

I have been in pain for months. I have told the acupuncturist, the cardiologist, the nephrologist, and probably a few others about this many times. What I've basically been told is that this is the way that it is.

Sometimes it's a dull ache. Sometimes it's discomfort. Sometimes it's like knives going into my belly. Generally I say nothing and go about my business as if nothing is wrong. I smile. I make conversation. I laugh. I engage in polite conversation. Those who know the health challenges I'm facing tell me how good I look, as was the case yesterday with Susie. Or a few days ago with Tom and Daryl. Or a few weeks ago with Rachel and Matt. But I'm feeling lousy.

Today I woke up in pain, and the pain persisted all day without a let-up. It's going on 11 at night, and I've rubbed my entire mid-section with tiger balm, hoping for some relief. I sure wish it would come so that I could sleep. I have a big day ahead of me tomorrow.

One of my Hopes for the New Administration

During the past eight years of the Bush administration, I have attended approximately 15 peace demonstrations and candlelight vigils for peace. During one of my first demonstations--long before we entered Iraq--I received a poster from one of the many people who hand out free posters with sticks at such events. After several moves, I no longer have the poster.

I was disturbed by the race to war against Afghanistan and, later, Iraq. I was also disturbed by our deteriorating civil liberties. I wanted to show where I stood on both counts, and so I displayed my poster in the front window of my apartment.

"War is not the answer" seemed to-the-point but also, at least to my thinking, noncontroversial. Plus, it featured the peace sign, a universal symbol of nonviolence. I had seen many more forceful messages displayed at the rallies I'd attended, messages that I felt were not in keeping with a stance of peace, but were rather derisive and too in-your-face.

And yet soon after I had placed the poster in my window, I had to call Triple A to jumpstart my van. The tow truck driver, an African-American man in his 50s, wondered if that is the message I should be sending at this time. He seemed to agree with my sentiments, but felt that I could get into trouble for expressing them.

Sure enough, a few days later, two Long Beach police officers showed up at my door. They asked if they could come in, but, thinking quick, I said that it was a nice day, that we could talk on my front porch. They asked if this were my place. Interpreting the question as, "Do you own this place?" I answered, "No."

"But you just came out the door," one of the officers said. "Yes, I live here, but I don't own the place," I clarified.

They hemmed and hawed a bit, then asked me if that were my poster. I answered that it was. Finally I asked, "Is there a problem, officers?" They reluctantly said, "No." I then asked if I were free to go. "Yes," one answered.

I walked to my van across the street and sat in it for a good 10 minutes. All that while, the officers sat in their patrol car. Finally when they left, I left too.

And so I come to one of my hopes for the new administration: that exercising one's First Amendment freedoms will no longer be a crime, will no longer put one on a subversives list, will no longer result in police intimidation. In a broader sense, I hope that the Constitution will be restored, that "free speech zones" will be a thing of the past, that the entire country will once again be a free speech zone.

Obama is off to a good start in that direction, as he will be closing Guantanamo Bay, something that I have spoken out against on many occasion and have called my senators, representatives, and president on many, many occasions. If we cannot keep people from torture, then all the talk in our Constitution about civil liberties is all wasted ink.

Tears for my Cute, Little Belly

Last night I wept over my belly, remembering the last time a man had touched it.

Ken, whom I've known for almost 30 years, was in town around Christmas. I had not seen him for almost a decade. I made lunch for us at my apartment, and later we laid down. There was such an ease to being with him, something so familiar, the kinship of two beings dropped on a strange planet at birth. The sweetest moments during that time with him were those in which he rubbed my belly, telling me how much he loved doing this. (I had completely removed my insulin pump, so not even the infusion site got in the way.) This was by far the most tender thing a man has done with me for many, many years.

In less than two weeks, a catheter and tubing will be emerging from my belly. I wept, thinking, "What man will want to rub my belly then?" Actually, even if I found a man who was interested in doing so, half my cute, little belly will be taken up by this apparatus.

Ken and I made plans for me to visit him in Tucson during my spring break. Now that I will be on dialysis, I don't know if this will be possible. Plus, I have to get up the nerve to tell him. I hadn't even gotten up the nerve to tell him about the insulin pump, much less about the catheter and tubing.

It seems a bit cruel that after nine years sans Mike--my last and truly my only boyfriend--that I should finally make such a tender connection with a man, and now it will be over after a single encounter.

I expressed these fears to Aaron, who said that every relationship has to face challenges, and that if Ken cares about me, he'll want to work through this with me. Aaron is such a sweet guy, seeing things from his vantage point, of how he would negotiate the world if he were in Ken's position.

But the truth is that Ken thinks of me as one would a sunset or a mountain range, something beautiful and amazing, but not in need of any fussing. He called the morning after I saw him in December, but I have heard nothing from him since. He probably thinks, "We made plans for her visit in March. She'll be here then."

This is such a far cry from what I want in a relationship, but still it is so much more than anything I have had in the last 10, 12 years.

Perhaps in my dreams, a man will tenderly, lovingly, stroke my belly. I just hope I can recall such a dream upon waking.

**************

After I wrote the above, I left my apartment and was gone all afternoon. Upon returning home, I found two messages from Ken. He had left one on my cell and one on my land line just minutes after I had posted the above.

I told him about dialysis and about the insulin pump. He said that he will always want to rub my tummy, as much of it as I will allow him to rub. This is exactly what I needed to hear!

More Kudos for Socialized Medicine

I went into the emergency room at St. Mary's Hospital in central London at 8 p.m. on Sunday. The British health care system has a mandate that no more than four hours can pass between the time a patient enters ER and is treated. And so the disparities between the American system and socialized medicine were revealed.

During my two-day stay at St. Mary's, I was continually impressed by the level of care I received. First off, everyone from the ER staff to the ward nurses to the team of doctors assigned to my case seemed to be genuinely enjoying being there. Everyone was happy, even playful. I attribute this to a different focus, not profits and cost controls as in the American system, but doing whatever is in the best interest of the patient. As the cheery Dr. Joe Lewis (he told me his mother did not name him after the fighter) said, "I don't even think about those things. I am just interested in giving the patient the best care." What a concept! And surely health practitioners who are focused on the reason they entered the profession--maintaining and restoring health--are going to be much happier than their American colleagues who are under the gun to reduce costs.

Because I am a kidney patient with complicating factors--diabetes, heart disease--I was given special care. Not only did an in-house team of a half dozen doctors monitor my case, but two nephrologists from a nearby kidney-specific hospital oversaw my care and made visits.

I was given a private room in the oncology ward because it was the last bed that was available in the hospital. This was the quietest, most relaxing experience I have ever had in a hospital--by far!

On the wall was a notice that oncology patients could receive complimentary reiki, acupuncture, massage, and reflexology. This is due to Prince Charles, who made a push to combine conventional medicine with alternative, or complimentary, practices. We are so far behind as far as that goes in the States!

Lastly--and this is a big one for me--the place was clean. Every corner appeared to be disinfected and dirt-free. The cleaning lady spent 20 minutes or more each day cleaning my room. Yes, the building itself was old, perhaps 100 years old or more. There were dings at every corner and even large gouges in the walls. But the place was clean. Women were not allowed to wear dangly earrings, and no one could wear a wrist watch--thereby denying germs a place to attach. This was so wonderful to see, as I have had such awful hospital experiences in the States--blood and feces and pills and syringes on the floor. Yikes!

So now I have been in the hospital in three socialist countries--China, Canada, and the UK. All have been much more positive experiences than I have ever had in the United States. I don't understand why socialized medicine gets such a bad rap, as I have had only positive experiences.

I Need to See an Actor!

On Sunday night, I couldn't take it anymore. I was exhausted and nauseous, having difficulty breathing and walking.

I told the front desk clerk at the hotel, "I need to see a doctor." As happened several times during our London trip, the clerk heard something other than what I had said. She replied, "Yes, ma'am, what kind of theater are you interested in?" Thinking that perhaps the city is divided into buroughs known as theaters, I said, "Yes, I need to see a doctor. How do I go about doing that? I'm interested in whatever is closest." Again she said something about theaters. Finally I was clued in and said "doctor" very slowly.

How eccentric to say, "I need to see an actor!" Well, I suppose if one really needed to see an actor, London would be the place to do it.

If I Were Home, I'd Head for the Hospital

If I were home, I'd head for the hospital. Very difficult for me to walk. The discomfort and tightness in my abdomen have progressed to pain. Even at rest, I feel the pain, and my breathing is labored. Getting up stairs and walking to and from the tube station are arduous. Aaron is patient with me, even when I have to make frequent stops.

Went to the British Museum this morning. Much more remarkable than I had ever imagined. The plunders of the empire! The Greek antiquities at the Getty are such a pale comparison to the treasures at the British Museum. Also loved the Assyrian collection and the Japanese screens. I can see how Londoners could spend every weekend here.

Took the tube to St. Paul's Cathedral. Quite a stunning experience. Most of the interior was roped off in preparation for a concert. The organist was practicing. Aaron did not go inside as he still has a fear of large, open interior spaces.

Walked across the Millennial Bridge to the Tate Modern. So cold!

A lot of the Tate was conceptual art bullshit. This even gave Aaron a headache. I imagine conceptual artists getting together and laughing at all the money they're making from creating stupid shit, like pieces of leather hanging from the ceiling or bricks arranged on the floor or pieces of colored paper plastered on the museum walls. Such a waste of good gallery space. As Aaron said, all the conceptual art in the world doesn't equal the emotional quality of a good painting.

Took a bunch of tubes back to the Bayswater Station, which is about eight blocks from the hotel. Aaron asked if it was possible if we could go home early. I said I didn't know. I'm getting worse each day.

I want to see as much as I can, but then again, I'd rather just curl up somewhere and sleep.

Spent a lot of time in the underground today. Really getting to know our way around.

Went to the Wellington House. The upper floors are still the residence of the some=day=to=be duke of Wellington. The lower floors are devoted to huge canvases, gold ceilings, and mirrored walls. The attendant asked us if we wanted to see the house or the arch. We thought he said "the house or the art." We were quite confused because the art was hanging on the walls of the house! Sometimes I really wonder if we are speaking the same language.

Ate lunch at a high-end restaurant, Woosley. Endive salad, grilled sardines, steak tartar, chicken dumpling soup, and leaks. By far the most expensive meal we had and the one I least enjoyed. Too rich and too strange. Decor, however, was quite lovely. Lacquered black wood.

Saw an exhibit of Byzantine art at the Royal Academy of the Arts. I love Byzantine art! I wish it would make a comeback.

Nosed around at Harrod's. Way over the top. Like shopping at Vegas or Disneyland. Talked with two shop girls, one of whom said she has lived in London for 18 years and still doesn't know all of Harrod's. Wow, it's a lifelong adventure! But not for me.

Brit Observations

A few things I've noticed about the Brits:

* They give good directions, unlike the Irish, who make a game out of giving the wrong directions.

* A lot more reading going on here--in the tube, on benches, inside churches.

* A lot fewer cell phone calls. I have yet to hear a single call that intruded upon my space and quiet. Very respectful.

* A lot more white people here than in LA.

A Day of Art

Took the tube to Trafalgar Square and glutted our brains with art. The National Portrait Gallery. The National Gallery with Van Eyck's "The Arnolfini Marriage."

Took a bus to the Tate Britain and saw a lot of Rossettis--very romantic.

I love Turner, but Aaron teased me, saying he painted like someone who was going blind.

I also really like romanticized, fantasy landscapes with misty scenes and Roman ruins. Aaron detests this genre.

Otherwise, however, our taste in art is compatible. We concurred that the contemporary museum was a bunch of conceptual art bullshit. All in all, a fantastic day.

We've Arrived in London

Aaron and I have arrived in London! Hooray!

I had a little medical emergency on the plane, so I was glad Aaron was with me. My blood sugar dropped to 57 (normal is 75-120). I was sweating and confused. Aaron got me an orange juice and then another. That helped a lot.

The place where we're staying is in the Bayswater section of the city, near Kensington. We took a walk and ate at a Malaysian restaurant.

The exchange rate is better than we had expected. Instead of one American dollar being worth only 50 cents, it's worth more like 75 cents. Still, things are expensive.

Why I Chose Peritoneal Dialysis

When most people hear "dialysis," they think of being hooked up to a machine that pumps out dirty blood, cleans it, and pumps it back into the body. This is hemodialysis and is done at a medical clinic. Patients generally go into the clinic for treatments three times a week, four or five hours each time.

The advantages of hemodialysis are that someone else does the treatment and all you have to do is sit back and relax; you don't have to keep any supplies in your home; you only receive a treatment every three days; and you are able to have a pet in the house.

The disadvantages are that you have to rely on someone else to perform the treatment; you are restricted in your travel to large urban areas that might have a clinic that could accommodate you; you feel weak and tired between treatments since the toxins are building up in your body on the days without dialysis; you have to allow two large needles to be stuck in your vein each time; and you are vulnerable to the unsanitary environment that is unfortunately the norm at most hospitals and clinics.

The alternative is peritoneal dialysis. It is done four times a day, using the peritoneal membrane as a natural filter. Each exchange of fluids--clean in, dirty out--lasts about a half hour. It is done at home or in some other clean place.

The advantages are that the patient has control of the treatment; travel is not restricted to large urban areas that have clinics that can accommodate your travel plans; and, since the system is being cleaned four times a day rather than only once every three days, the patient feels better and has more energy.

The disadvantages are that the room in which the dialysis is to be performed has to be kept sterile, dirt- and dust-free; the patient is responsible for treatments; a lot of space has to be devoted to storing dialysis bags and other supplies; and dogs and cats in the home are highly discouraged as the hairs could contaminate the system and cause a serious infection.

I stewed over this for a while, wondering which way to go--hemodialysis or peritoneal. At last I decided on peritoneal because it is better for my body and my overall well-being. The whole thing about not being able to have a dog--something I have long wanted but have been unable to have because I have lived in apartments with pet restrictions--made me pretty sad. But I don't know what the future holds, and it could hold a transplant--and a dog.

It's been a little over a year since I started wearing an insulin pump. That was difficult enough, and the insulin pump's infusion site is changed every three days, so if I really wanted to keep my pump a secret--like when having sex with someone who may not know me very well--I always have the option of removing it for a few hours. But that isn't the case with the dialysis catheter. Having something else emerging from my abdomen doesn't thrill me in the least.

But when the alternative to dialysis is death, I realize I am really limiting myself if I go with the death option. A Jewish saying comes to mind: "Take care of your health. You can always commit suicide later."

The rejoinder to that, of course, is "But if I commit suicide now, I will never have a chance at health."

Off to London Tomorrow!

As soon as I began to accept the fact that dialysis was my destiny, I began to look ever more earnestly at the world map on my shower curtain. Where in the world should I go for my perhaps-last big adventure? A daunting question.

I immediately thought of New Zealand. How often I have heard wonderful things about New Zealand! Actually, I've never heard a bad word about the place or its people. I bought a guidebook and began to make plans for three or four weeks in a camper van, tooling about either the north or the south island. But a travel agent wondered if I had really thought this through. I'd be a very long way from home, without family or friends. I was already having a rough emotional time of it, wouldn't traveling solo exacerbate my sadness? What if I had a sudden decline or medical emergency? Would my insurance cover me in a foreign country? Who would help me?

Then I thought of taking a road trip in the U.S. One last camping trip. (I'm told camping is still a possibility for peritoneal dialysis patients, but what is meant by that is RVing--definitely not my kind of camping.) But then I thought of how cold it is throughout the country at this time of year. And how much colder it would be sleeping inside my truck, what is essentially a metal box!

About this time, I received an email from Virgin Airlines, touting a hotel-and-airfare deal to London. I asked Aaron if he thought he might be able to get a week off from work, given the circumstances. He spoke with his boss, and she said yes. So I booked the trip--with trip-cancellation and health insurance.

Of course it is impossible to say what the future may hold. I could be fast-tracked for a transplant. I could be the first stem-cell-kidney-replacement patient. I could drop dead tomorrow. I could be fully restored to health. Who knows?

But with peritoneal dialysis, travel is far less spontaneous, as the dialysis supplies are quite cumbersome. A month's worth of dialysis solution and tubing takes up the space of three four-drawer filing cabinets. And the places I would travel would have to provide a sterile environment in which I could conduct the dialysis. So though London may not be my very last trip, it may very well be my last trip without all this excess baggage!

Angelic Light Beams

For about two weeks in December, I saw flashes of bright white light once or twice a day. Sitting in a restaurant. Inside my apartment. Driving down the street. No particular place or time. Not linked to any particular thought pattern or mood. These flashes were brilliant, like when you get zapped for going through a red light in a camera-controlled intersection. Or like a flash of lightening, but parallel to the ground and anywhere from two to five feet from the earth.

I wondered if anyone else saw this, and so once I asked my son if he'd seen the flash just a moment before. No, he said.

I used to see beings of light all the time. While giving massages, I would see them around my table. I'd see their glimmering bodies in my living room and around my bed. I'd see them as great clouds of shimmering light and sometimes huge pillars of light while walking at night. I would smile at them and send them love, which would make them glow brighter still. But I have seen very little of these light beings during the past two years.

One day in December, however, a being appeared in my bedroom. I spoke to the being, thanking it for appearing to me, telling it I had missed seeing beautiful beings of light, and asking it to work with my body and bring healing energy into it. As always, I directed love at the being, and its shimmering intensified. I asked that all beings of light and love who are assisting me on my journey hear my request for healing. Soon after this, the flashes of bright white light began appearing.

The seond-to-last light beam I saw was on Christmas Day. A flash of white light across the street in front of the restaurant where my mother, my son, and I were having our holiday meal. And the last one was on Dec. 27 while waiting for my friend Jose.

I have missed these angelic visitations, and I am very open and accepting to such love manifesting before my eyes once again on a daily basis.

Evidence of Alien Abduction

Here it is--proof positive of alien abduction! I went to bed last night without a mark on my calf, and I woke up this morning with these scrapes. Now a casual observer might remark that these are nothing but the result of my nails scratching my legs during my sleep.

But look again: The upper set of scratches consists of six lines. If they were from my nails, there would be four lines. Perhaps five, but as you can see with your own fingers, if the thumb is included, it is not in alignment with the other four fingers and so would not produce five parallel lines as the thumb is perpendicular to the plane of the fingers. And either way, that doesn't explain six equidistant lines.

Now I have woken up on other nights to find scratches, cuts, or bruises. But these have all been small and were easily dismissed. But this is significant.

Also note the lower set of scratches. Not sure if it's clear in the photo, but the lower marks are not lines but circles. The first row--the one nearest the front of my body--consists of two circles, followed by another row of two, but with the first circle equidistant between the circles of the first row. The third row consists of three circles, and the fourth of another three circles, the middle one being dark red. The fifth row has one dark circle directly opposite the dark circle in row four. And then the sixth row is a single circle. It's conceivable--though not probable--that my fingers could have scratched the top set of lines. But how do fingernails make circles of the same size?

What's more, I wore scrubs to bed last night. The snug-fitting pants are not made to inch up my leg and expose skin. In fact, they are so snug that I cannot easily roll up the pants leg to my knee. And I certainly don't have the kind of sharp nails that would be necessary to draw blood through clothing. Also, the pant leg was not cut or in any way damaged.

Hmmm...This is all very interesting, especially considering my post of Dec. 13, "You Know You're Desperate When..." in which I wrote of my fantasy of being abducted by space aliens who would replace my in-need-of-assistance organs with brand-new ones cooked up in their med labs just for me.

When I showed my son the evidence, he asked if I had learned anything from the aliens. I thought for a moment, then answered, "Yes, I sure would have thaought that with their advanced technology, they'd have a less dramatic way to take a blood sample!"

Step Away From the Edge!

For months I have been putting off dialysis by whatever means possible--prayer, meditation, affirmations, solicitation of prayers from others, twice-weekly acupuncture treatments and massage, at-home moxibustion, severely reducing intake of animal protein, a positive attitude, herbal formulas and kidney-tonifying teas and tinctures, ingestion of large quantities of dehydrated bovine kidney and pancreas, invocation of angelic assistance, pleading, and begging.

All through this I have been expecting a miracle. I've even had the balls to tell my doctors that.

That I have not seen improvement in my kidney function is not only disappointing and disheartening, but I have at times felt betrayed by God. I have felt like Jesus on the cross when he said, "Father, Father, why have you forsaken me?"

This is not a new experience for me. Hundreds of times over the past 37 years of diabetes, I have seen improvements in my condition. Sometimes a drop in blood sugar level and a corresponding drop in insulin requirements. Sometimes renewed energy and the ability to walk for quite a distance without becoming exhausted or out of breath. Every time, each of these hundreds of times, I have thought, "Oh, thank you, thank you, thank. This is the turning point. I am being restored to health!"

And every time, this improvement has been short-lived, sometimes just a day. Each time I have felt a betrayal, even a sense of being cosmically toyed with.

But the high points I have experienced during the past several months have been more acute. During the past 37 years, I have faced multiple daily insulin injections, an insulin pump, hemorrhages in my eyes, cataract surgery, congestive heart failure, severe anemia and blood loss, weakness, fatigue, scores of life-threatening medical emergencies and hospitalizations, transfusions, adverse drug reactions, and an endless stream of doctors' appointments, tests and lab work. But when it came to dialysis, I always said I would rather die than undergo this constriction of my life. Now dialysis is staring me in the face, and I have to make a decision: dialysis or die.

On Monday I saw my nephrologist, Dr. Butman. He put it this way: "Heidi, you're like the person in a movie who is dancing on the window ledge of a high-rise building. You're feeling fine, as if nothing is wrong. Well, I'm saying, 'Heidi, you'd be much safer if you just stepped back inside the building.'" His analogy made me laugh. I AM the woman dancing on the window ledge!

Right now I feel fine, not great, but not like I'm dying. In fact, Dr. Butman said that, considering my abysmal lab markers, I look really good. But as he said, that could change very quickly. If my potassium level suddenly became elevated, which happens in end-stage kidney disease, I could die without warning, in the time it takes to snap your fingers. Other signs of the end would be a little slower--the buildup of toxins to the point where I'm nauseous, can't eat, and am vomiting, accompanied by weakness and a wasting away. And a massive heart attack or stroke are also good possibilities.

Furthermore, it's better to start dialysis while I'm still feeling good, rather than start it on an emergency basis through an artery in my neck. Since it takes approximately three weeks for the surgical incision to heal, it would be best to undergo the surgery as soon as possible so that the catheter in my abdomen would be in place and ready to go.

So I scheduled surgery for Jan. 30, a little over a month away. I'm stepping away from the edge, but damn it, I'm still expecting a miracle. Something on the order of a band of angels sweeping me from the ledge and depositing me safely in the Land of Properly Working Organs.

Another Way in Which the Healthcare System is Broken

We've all heard about or experienced how the healthcare system in this country is broken. Specifically, that 45 million or so people are without health coverage and that hospitals that accept indigent patients are going broke.

I would like to address other ways in which the system is broken--and could be so easily improved with so little money.

I am a member of Kaiser Permanente, one of the biggest, if not the biggest, HMOs in the country. Kaiser is all about processing patients, not about healing. The following are my recommendations to improve the system and make it more conducive to health:

* Keep it clean! Two of the last few times I've been hospitalized, I've been horrified by the filth. On one occasion at the Harbor City hospital, there was blood on my sheets and blood on th floor. I told the nurse, who said he was not authorized to clean it up. I asked for cleaning supplies so I could do it myself, but he said that was not allowed either. And while at the Bellflower hospital, I saw feces on the bathroom floor before the cleaning staff entered the room and after they left. This is why I now ask my son to thoroughly clean my hospital room before I enter it. This shouldn't be necessary. And my next precaution is to bring anti-bacterial wipes for any personnel who step through the door to attend to me. All this to prevent the staff infections that are killing and debilitating thousands in our nation's hospitals.

* Turn off the TVs! About 15 years ago, Kaiser introduced TVs into waiting rooms. At first, they displayed soothing nature scenes accompanied by soft classical music. This was fantastic. But soon enough these healing images and sounds were replaced with TV shock shows. How many times I have gone to a cardiology appointment only to be assaulted by distraught, disturbed, and disturbing drama queens and kings shouting at each other and traipsing their crazy lives in front of all the world to see.

* Bring some life inside. I feel as if I'm in some Soviet-era government building when inside a Kaiser facility. What is needed are living plants and aquariums and aviaries. Patients who are surrounded by vibrant living things tend to do better than those who are denied contact with life that is flourishing.

* Give patients a rub. While patients are waiting for a stress-inducing doctor appointment or diagnostic test, why not have a massage therapist give them a shoulder rub or massage their hands? What a relaxing, stress-alleviating, healing experience!

* Get rid of the numbers. Decentralize healthcare services so that the receptionists actually know the patients by name. This is one of the chief differences between going to an HMO and going to an alternative practitioner. In fact, when I call my acupuncturist's office, he often picks up the phone. This is in contrast to Kaiser's maze of buffers before ever reaching the doctor. In fact, I have never reached a Kaiser doctor. Even when he or she does receive my message, a nurse returns my call, not the doctor. And then the nurse doesn't leave a message besides saying that I should call back, and so the same frustrating experience begins anew. This can go on for days or even a week before a question can be answered, and by then the patient is either dead or over whatever it was that was the problem.

Until my recommendations are enacted, I will continue to bring cleaning supplies to the hospital and to psychically protect myself from all the negative vibes and all the antagonistic-to-healing components of the HMO system.

Still Expecting a Miracle

Despite some dark thoughts and pessimistic worrying during the past two months, my overall attitude is one of hope. I am still expecting a miracle.

This is the Season of Light, so what better time for a miracle. I am focused on the healing of my body, especially the restoration of my kidneys and heart to optimal working order.

Each night and morning when I meditate, I feel the vibrations throughout my body, pulsations of vibrancy and health. Each day I affirm my improved health and give thanks to beings of light and love who are working with my body during the dream state to bring it into alignment with its master plan of health.

In the past week, I have noticed some positive changes. My breathing is no longer labored when I am lying down. I only need two pillows under my head at night and not four or five. In fact, there have been nights in the past few months when I had to sit in a straight-back chair in order to breathe--a position that is not conducive to sleep. Also, I am able to walk quite a distance without becoming short of breath or growing fatigued. Case in point: During the evening of caroling, I probably walked 14 blocks. Even a few weeks ago, I had trouble walking to my truck, much less to the end of the block. This is a great improvement. And I am no longer exhausted in the middle of the day and need to take a nap. Yes, indeed, a miracle is definitely in the works.

I am putting off surgery, knowing that it will soon be unnecessary. The miracle is manifesting in perceivable improvements. My body is aligning with health, vitality, strength, and vibrancy. The miracle that I have been anticipating for almost four decades is drawing nigh in this season of miracles.

Caroling for Brandy Yields Booze and Good Cheer

Last night I and 10 other merry-makers caroled our way from door to door, bringing joy to the Rose Park area of Long Beach. Since I am the one who began this tradition some 25 years ago in Wisconsin and finally, finally, finally, others are catching on that this is tremendous fun, I got to ring the doorbells and direct the singers. Except for Lisa, one of son Aaron's coworkers, who has a degree in vocal music, none of us have trained voices. But that really didn't matter. We made up for our lack of talent with great bursts of enthusiasm.

At households where I deemed the occupants were partyers, I'd give a little signal to my fellow carolers and we'd close with a second verse of "We Wish You a Merry Christmas," which goes like this: "Now bring us a cup of brandy/Now bring us a cup of brandy/Now bring us a cup of brandy/And a shot and a beer." This goes back to the first caroling venture on a cold winter night in Wisconsin with my then-husband, my brother and his wife.

I gave the signal at Ali's house, but his dog ran off and he had to fetch him. By that time we were across the street at the home of a woman who brought out her tambourine to accompany our "Jingle Bells." As we finished there, Ali ran across the street, beckoning us back to his place. He had gotten a bottle of brandy from his liquor cabinet and poured a dozen shot glasses for us. As I no longer drink--doesn't appeal to me anymore and it doesn't do my health any good--a few of my fellows got two shots.

We stopped at the drive-through lane at Golden Burger. These folk were thrilled with "Feliz Navidad" and offered us money--which we refused--and sodas. Next up was Portfolio Coffeehouse, which like last year was populated with bored hipsters and PC-entranced yuppies. Both sets were too cool to give us any mind. What dullards!

A few other houses, one with two guys, one holding a beer, but not offering us one. Another with two women, new homeowners who were so happy we'd stopped by. A house with a couple and a young child, who gave us his leftover Halloween candy. A house we had visited last year at which the family sat on the porch after supper, apparently waiting for random magic--like a group of carolers. And then there was Suzanne, who asked to join in, so Othman shared his song sheet and she belted out "God Rest Ye Merry Gentlemen."


Then it was on to O'Connell's, a neighborhood bar complete with pool tables. Music was blaring from the jukebox, so I asked the bar tender to turn it down because we were going to sing. He obliged. We hit them with the first chorus of "Here We Come A-Wassailing." I then turned to our audience and asked, "Any requests?" A burly guy quipped, "Let's see your tits." I didn't miss a beat: "No! A song!" Since no requests were made, I gave the signal to close with our special version of "We Wish You a Merry Christmas." At first the bartender said something about no money, no booze. Then Othman countered with, "We know you've got brandy here." The bartender gave in when I said that we come here all the time and pay for our drinks. He gave us three pitchers of beer on the house!






Wishing to be on our way, back to the business of caroling, I ordered my fellows to down their drinks. Shouting a merry Christmas to all, we were out the door. We stopped in front of the cafe next door. It was closed, but we sang anyway. The owner unlocked the door, and we sang our hearts out for the amused table of four that was finishing their late supper. Most of my group was pretty smashed, so the carol was off-key with different singers finishing at different times. Othman explained: "Some of us are a little drunk." I asked if the diners had any requests. They laughed and one of the them said, "Oh, no, I don't know how you could top that!" We wished them a merry Christmas and headed home, stopping only to serenade a lone walker.

The evening ended around the Christmas tree with me passing out gifts to my fellow carolers. Blueberry juice for Othman as he had not known that such a thing existed. A vintage scarf and vintage earrings for Christina, who dresses in '50s attire. Balls of yarn, pipe cleaners, and glitter pom-poms for her boyfriend, Mike, who I said was creative enough to know how to use these in the bedroom. A Batman mask and a bottle of champagne for Bryant. Funny magnets for Dennis. The U.S. Constitution and "1001 Places to See Before You Die" for Othman. And what was best of all--a Lonely Planet guidebook to Southeast Asia and a map of the same for Tyler, who said that was the next place he wanted to go. He was so thrilled that I had known this. "Of course I knew, Tyler," I told him. I also gave him a huge tome of natural remedies, of the right foods for hundreds of ailments--a book he had been looking at in Spanish while traveling in Peru, but he said having the English version would be so much easier.

What a grand evening of fun and merriment for us and of holiday magic for those we regaled.