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?