A Perfect Storm

This evening I got so caught up with writing that I missed my hook-up time. I should have started dialysis at 8, but didn't even begin the set-up process until after 9.

Timing is crucial, as the dialysis solution should not dwell in my peritoneal cavity for more than eight hours. During the nighttime therapy, I pass through five cycles, each dwell time of a little more than an hour. After eight hours of dwell time--which can be easily reached between the mid-day and the night hook-up--the solution and all the toxins it contains are absorbed into the body, thereby defeating the whole purpose.

Once I realized how late it was, I started to scramble. I went to the kitchen and took my blood sugar. It was a dangerously low 60. In the confused mental state that accompanies low blood sugar, I thought I shouldn't have anything to eat or any juice to drink because I would be hooking up soon, and the dialysis solution has dextrose in it. Definitely not thinking clearly.

I took my blood pressure, as this is a crucial factor in determining what strength of dialysis solution to use. Yellow, which is the weakest solution, for low blood pressure, a loss of five or more pounds in a 24-hour period and/or a dehydrated state. Green is for blood pressure around 120/80 and stable weight. Red is for fluid overload with blood pressure around 150/100 and a weight gain of five or more pounds in a 24-hour period. My BP was 170/84, but my weight gain over the day had been less than five pounds, so I decided on two green bags.

I returned to the bedroom to pull the correct quantities of solution from the boxes under my bed. In my low-blood-sugar daze, I was sloppy with the aseptic technique I am to use to prevent infection. I didn't wash my hands before connecting the drain and the tubing. When connecting the bags, I neglected to wear a surgical mask.

Then the alarm sounded, and I had to call a technical rep. He walked me through correcting the tubing problem. By this time, my jaw was going slack. My blood sugar must have dropped further. I finally got some juice to raise my glucose level and so my consciousness, a part of me still deliberating which was more important--hooking up as soon as possible or correcting my dipping blood sugar.

I am very fortunate that a part of me demanded that I get some juice. I was in the midst of a perfect storm--low blood sugar, past my hook-up time, sloppy technique due to muddled thinking, technical problems with the dialysis machine. Any one of those factors is problematic, but all four might have ended in disaster. But as it is, I am hooked up, and my blood sugar is now a perfect 129. I passed through the storm once again.

Heidi's Heart

My dear cousin Rhonda (pictured here on the right, with cousin Mary), with whom I stayed when I attended the foeden party/family reunion in Minnesota this past November, observed the following about the blog name Heidi's heart. If you jam all the letters together, it becomes heidisheart. She then deconstructed it as such:

he (the guy)
id (our primitive side)
i (the most important one to each of us)
she (the girl)
art (what makes life worth living, like good writing)

Add it together and you get heidisheart.

She is a clever gal, that Rhonda!

Tears, the One Exception

Tears are the one exception to the fine-in-your-body-but-gross-outside rule that I wrote of a few days ago. It is the only substance that is not repulsive once it is detached from a living human.

I wonder why this is. Tears are most decidedly aligned with emotions, but then so is semen. And some tears, of course, are neither those of joy or sorrow, but are instead a reaction to external conditions such as onion fumes, smoke, or tear gas.

Tears are clear, transparent (both figuratively and literally). Perhaps this clarity gives them an edge. But of course, you can see light through urine too.

Tears, the anomaly.

A Gorgeous Lace Handkerchief

After a year and a half of membership, I have canceled my match.com subscription. In all this time, I have sent "winks" and/or e-mails to about 50 men, and perhaps 30 have winked at me.

Many have written how amazing I am, how much they enjoyed what I'd written, how they had never read a more interesting profile, and in general how impressed they were with my photos and my outlook on life, and then were never heard from again. I guess they were looking for dull and conventional women because these 18 months netted me dates with only two men. One of whom made it clear from the onset that he was interested in only a platonic relationship with me. And the other who, though we've seen each other a dozen times and talked many more times on the phone, has never given me more than a close-mouthed peck. Even after I gave him an hour-and-a-half full-body massage!

So once again I am giving up. Not literally giving up, I suppose, but realizing that whatever it is that men are looking for, they must be looking for something I don't have. I go down a list of my good points and have trouble seeing what that might be: trim; tall; beautiful, blue eyes; long legs; blonde; intelligent; playful; good sense of humor; pays all my bills on time and never wracks up credit-card debt; not afraid to get dirty; slow to complain; doesn't demand gifts; eager to go camping with you; loves to dress up; enjoys sex and agreeable to all manner of crazy things in bed; doesn't mind cooking and cleaning; open to new experiences; open to new ideas; gives a great massage; a fantastic listener; someone who will be there for you when you need my support; has a beaming-to-beat-the-sun kind of smile and a wonderful laugh. My God, I'd date me! No, I'd marry me!

Over the years, I have asked many friends and male acquaintances what they think this is about. All I've ever gotten is that it could be men are intimidated by me. But that can't be it. Think of women like Michelle Obama. She's pretty terrific, and she has a great guy by her side.

The only explanation I have ever come up with on my own is this: Perhaps I am a gorgeous lace handkerchief. When men see me, they think, "That's an incredibly lovely handkerchief." And then they remember that the world no longer has use for handkerchiefs. Everyone uses Kleenex.

No More Drug Talk

I commented to my mother as I dropped her off this afternoon how wonderful it is that she no longer talks about her drugs. For many years, 90 percent of the time I spent conversing with her was about what drugs she's taking, how she needs more drugs, and when is she going to get the drugs. During the past year, this was often accompanied by hysteria when her drugs did not appear at precisely the right time. Even a few minutes late would send her into a tirade of frenetic behavior that I found absolutely crazy-making, like watching a heroin addict or someone who, if she had a gun in her hand, would blast everyone in sight.

For some reason, she no longer mentions her drugs. What is responsible for this shift, I do not know, but I am very grateful. I truly hated to spend time with her when she was obsessed with her narcotics. I knew that she cared nothing about what I or anyone else was saying, that she was 100 percent focused on the drugs. And it was so incredibly stressful to be with someone who was so revved up, "hyper" or "anxious" not even approaching what was her mental status.

So I praised her today for her shift, whatever its cause. And I say a prayer that her calm, her willingness to participate, and her genuineness continue to manifest. If this shift is permanent, she and I may just be able to have a relationship. Wouldn't that be something!

Getting Mom to Participate

This afternoon I picked Mom up from her assisted-living facility and took her to feed the ducks at El Dorado Park. When we arrived, she said, "I'll stay inside." I calmly told her that my entire life she had refused to participate and that was no longer going to be the case. "You can help feed the ducks, Mom," I said. And in contrast to the past half century, she didn't insist on non-participation but instead got out of the truck without a fuss.

She enjoyed herself! What a concept: You engage in life and the people in your life and you have a good time! She smiled the whole time and took special interest in ducks she felt were hungry but unable to wrestle the bread from the seagulls. I couldn't help but think how her life and my relationship with her would have been so different, had she taken an active part in what was occurring around her decades ago, instead of holding back at every opportunity and refraining from interacting with the people she was with. Might she have remarried? Might she have stayed in Wisconsin, surrounded by a tight circle of friends who would watch over each other? Might she have forged a bond with my brother? It's hard to say how participation might have altered so many things.

Perhaps as she nears the end of her life, she is becoming the person she might have been all along. Well, except for the two years she spent in Europe in the early '50s. As Aaron remarked when we were sorting through the photographs from that time, "This is the woman I would have liked to have known." During these years, she was bright-eyed and smiling, seemingly ready for an adventure at every turn.

What then changed to make her into someone who lived a separate life from her husband, even while they slept under the same roof? Someone who didn't know the most basic things about her children, like where they had worked for 20 years and what kind of work they did? Someone who, when on vacation, always stayed in camp and read the newspaper instead of going on morning hikes with the rest of her family? Someone who would walk away while I introduced her to someone? Someone who has yet to attend a Wednesday outing, though she's had more than a year of opportunities to do so?

There's no telling at this point what happened to change her approach to the world, but it seems, after 55 years of dormancy, that perhaps she is waking up again. She's not in Europe and will never be again, but perhaps she will recapture a little of the excitement for living that she obviously possessed in abundance while in Europe so very many years ago.

Obama's Special Olympics Joke

I didn't watch "The Tonight Show" when the president made an appearance as I don't have a TV on which to watch it. I did, however, listen to the footage of his Special Olympics joke.

Obama had gotten a bowling score of 129, pretty awful. The audience cheered, and Jay Leno told him how good that was--the kind of patronizing approval often given to people with disabilities. And then the president called his own skills "Special Olympics."

I read some of the comments posted on YouTube and realized that boy, do we have a long way to go before people with physical or developmental disabilities are considered on par with the able-bodied.

What I would ask the president and all those who found his joke not a big deal to do is to substitute their own sensitivity into his joke. That is, if you are a woman and he would have said that he bowled like a woman, would you have been offended? What if he would have said he bowled as poorly as a senior citizen or a Latino or an Asian or a gay man?

Obama Dream

Two nights ago, I had a lucid dream about Obama. I was in his limo with him and two male staff members. We were looking for a place to have lunch, but all the restaurants were closed. I then said, "But you're the president! I'm sure a restaurant would open just to serve you."

Sure enough, the next place we stopped was agreeable to give us a table. Actually, that's quite literally all we were given--a utilitarian table, placed outside in the open air on a beach.

The president began talking policy, but I interrupted him, looked directly into his eyes, and asked, "How are you? You the person, not the figurehead?" He paused. I continued, "Because it looks to me like you could use a massage." He nodded and said that would be great.

I then quickly changed the subject and brought up something I had heard on NPR but nowhere else: that of all the politicians AIG gave money to in the 2008 campaign, Barack was the big scorer with $102,000. He looked away, said nothing, then got up to have lunch at another table.

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

In so many ways, I appreciate what Obama is doing--green projects, diplomatic overtures to Iran, streamlining the healthcare system. But we all have to realize that corporate and elite interests have their claws in him just as they have their claws in every politician. And that those claws demand blood, or should I say blood money.

The Repulsiveness of Detachment

About a week ago, Aaron said something that all of us have felt many times over the course of our lives but probably have not explicitly articulated: "Everything is fine as long as it stays in your body, but once it becomes detached, it's repulsive."

We all know that at any given time we're carrying about urine and feces. That's perfectly acceptable, but once we let it outside, once it becomes detached from our bodies, it's suddenly repulsive.

The same holds true for mucous and blood and semen. And before you say that you don't find the latter repulsive, consider how comfortable you would be with some stranger's sample on the bed sheets in your hotel room. A lot different than how you would feel if you simply found his mislaid Bluetooth or iPod--other things that can become detached from one's body.

Skin and hair are often the stuff of great beauty, celebrated in literature and the visual arts. But detach either of them from the fair person, and they are not nearly as attractive. Case in point: as a massage therapist who has rubbed the backs, arms, and shoulders of many with peeling tans, let me tell you that dirty, little, sweaty skin balls are not cute. Please scrub yourself with a loofah before seeing your massage therapist during the summer!

Nails, too, are often seen as beautiful. Some women even paint them to attract more attention to the tips of their fingers. But cut them off, and they are no longer lovely. How many of you have scolded someone for cutting his nails without catching the clippings in a receptacle? And I remember my friend Mark, who for many years collected his nail clippings in a jar. To give me the creeps, he would shake the jar, which would make a wispy, bones-rattling-in-the-graveyard sound.

Probably the most dramatic example is that of a fetus. As long as it is inside the mother's womb, it is considered an object of wonder, a testament to the continuance of humanity, a mysterious creature with unknown potential--at least this is often the perception from the outside. But if the fetus is aborted, if it becomes detached from its mother's body, it now possesses none of that glory and is simply placed in the trash.

















And so I have been noticing how dialysis changes public perception of me. Most other people keep their urine inside them until they can quickly, easily, and privately use a restroom. But for me, the whole process is much more cumbersome, time-consuming, and in your face. The 25 boxes of dialysis solution that are stacked in my living room and the other 15 boxes that are squirreled under my bed are everywhere-you-turn reminders that I am all about detaching a bunch of material from my body. And the few people who have entered this space thus far have evidenced a slight repulsion. They definitely do not feel comfortable about the thought of fluids being released from my body. Well, all I can do is to make sure they don't see the collection bags draining into the tub!

Mom Gets Real!

In the past month and a half of dialysis, a few friends have invited me out, and all but two times I have had to decline. The events always ran too late into the evening, interfering with my hook-up time of between 7 and 9 p.m. Then with the mid-day exchange, luncheon dates also have become problematic. (The only two things I have been able to participate in were a 5:30 p.m. screening of a film and a mid-afternoon bite to eat at Hof's Hut.)

In short, my social life is now limited to the following:

* watching a Netflix with Aaron and
* seeing my mom on Sunday afternoons

The latter has, up until very recently, been a chore. To everything I say my mother responds, "What?" This is quite annoying, especially since she doesn't do this with anyone else.

Just this past Sunday--two days ago--a shift occurred. As I told Aaron, this was the first time in my entire life that I can ever remember enjoying my mother's company. In contrast to all past encounters, she seemed to be telling me the truth or at least her truth, and her answers to my questions seemed honest and sincere.

We went to a coffeehouse, and she read aloud from her journal about her marriage to my father. She had always said that they met on a bird-watching outing, but she had no recollection of ever having said this. Instead, she said that my father was in the habit of stopping in at the YWCA where she worked on his way to work to get a cup of coffee.

In contrast to the previous Sunday's persistence, which only ended poorly, I let this go and did not press her. This worked so much better. It is really unimportant what is factual and what is not; the most important thing is that she is writing, engaging her mind, and by so doing, giving us something to talk about. Factual is perhaps not as crucial as emotional authenticity. Even if some of what she writes is fabrication or faulty memory, it sure beats dead air.

I am fully aware that one afternoon does not a relationship make. But it is a start. It is still a one-way flow of energy, but that is as it has always been. At least this past Sunday, this one time, she was not saying what she felt others wanted to hear. Perhaps that's it: For the very first time, she was real.

The Call from UCLA

When I arrived home this noon to do my mid-day exchange, I found a message on my voice mail from Lila Ruiz of UCLA's kidney-transplant team. She told me that she had received the referral from my cardiologist and nephrologist, and said that I would be receiving a letter in three to four months with an appointment date and time.

I was a bit surprised by the time lag. I had been told I would get an appointment with UCLA within a month. Lila said there have been so many referrals lately and that there is quite a backlog. She said I probably wouldn't be seen until late July or early August.

Dr. Butman is on vacation this week, but when he returns, I plan to ask him if I should or can also apply to UC San Diego and Loma Linda Hospital. They are farther away than UCLA, but perhaps my chances are better--or at least I can be seen quicker!

How an Atheist Can Pray

I have at least one friend and one relative who tell me they are atheists. They tell me they are sending me good thoughts, though they do not pray. Well, good thoughts are praying!

The standard idea of prayer is that you are begging God or some god/goddess to grant your wishes--give you something good or take something bad away. I would like to propose another kind of prayer, one that everyone, regardless of spiritual beliefs or lack thereof, can practice.

Instead of supplicating a divine being, simply be quiet and envision what you desire. See it in all its beautiful detail. Send love and affirmation to that thought. Feel what it's like to be in that state of love or abundance or health or whatever it is you desire. See the wonder and goodness that flows from that state of being. Feel your body tingling with the sensation of manifesting that state. This sort of loving, life-affirming focusing of attention is what prayer is, whether one is offering the prayer to God the Father or Jesus Christ or Buddha or one of a pantheon of Hindu gods or no god at all.

And this is how I pray for my health: I see my body functioning perfectly, the way it was meant to function, in its full glory of health and vibrancy. I soon begin to feel the tingling in my body, the life force flowing to and through every cell, reminding each cell that it is in alignment with God's plan for me of perfect health and vibrancy.

I do not focus on what I do not want. This only feeds what I do not want to bring about. Instead I focus on what I desire, what I wish to manifest.

And so there is no incompatibility with someone being an atheist and that same person praying. Good thoughts are prayer, and prayer are nothing but good thoughts.

Other Lives

Not often do I think of the images I have received of other lifetimes. After all, this life right here and now is the important one. It's the one that needs my attention.

Once in a while, though, I do give these images some reflection. Now before you start saying, "UGH, not another Cleopatra or Napoleon," I assure you that I remember no lives that were chronicled, much less deified. No, the lives I remember were outwardly simple, though I sensed an interior depth. This profound interiority is the primary reason why I so resonated with these others.

And who were they?

* A shepherd, seemingly in the Middle East. Perhaps Israeli. Dressed in tunic and sandals. Could have been 1,000 or 2,000 years ago.

* A Chinese apothecary, beloved by the local children, who giggled about him and tugged playfully at his long robes. He in turn smiled at them, considering them his children, though he didn't appear to have any of his own. No wife either. A gentleness about him, the compassion of a true healer. People would come to him with their problems because they knew he was discreet and that their secrets were safe with him. He would listen, then prepare a tincture to calm their nerves or lift their spirits or abort a sobbing child's unwanted child.

* A slender, nicely attired woman, circa 1930s. Brunette. Lived alone in a sunny, second-story apartment that was cheerful and tidy. Lots of plants. A comfy sofa upon which she leisurely sipped tea and read books, lots of books. Walked to work. Some kind of an office job, though more responsibility than was generally granted women in those days. Greeted by the shopkeepers and pedestrians she passed. Self-contained. Friendly, polite, but not close to anyone. Seemed quite calm, content with her life. Not at all lonely.

* A Catholic monk during the Middle Ages or perhaps later, but in a monastery that had not kept up with the times. This was by far the most powerful vision. I actually felt what he was feeling in my own body. I felt as if I were inside his body. I was there, kneeling on the cold, stone floor of an empty church, and felt I was descending into the earth, as if I had entered a trance that the monk had achieved through long hours of focused prayer. Through this experience, I received a valuable insight, which I crafted into the following poem:


Stepping Outside the City Walls

Five decades hauling water
to wash Christ's feet
and cook the abbott's supper.
Fifty years chopping wood
from forests beyond the city walls.
Pine and juniper, hazelnut, maple, and oak.
Trees felled by those who move in the world.

By day, the villagers left branches at our gate.
Sweet pumpkin bread,
apples, and candles, too.
Wildflowers and thick, coarse blankets
for men who sleep alone.

When only angels and devils stirred,
I brought the gifts inside.
A street filled with people would make me blush,
but darkened, it had no power over me.

Hours alone beneath the cross.
Bruised knees on a cold chapel floor.
Sarifices for the One who led me underground
to secret places where other lives were lived.


Thirty four years ago,
I awoke inside a girl's body.
Within her dreamy, preschool mind,
I was a thought:
How wonderful to be a monk,
a curator of God's soul!

She built altars of dandelions
and pillows of grass clippings for the Virgin's tender feet.
From the tulips to the weeping willow,
the Queen of Heaven floated on blue light beams,
winged garter snakes, and broken colored glass.

White leather prayer books and visions in the woods
kept the little girl content.
But as she grew, she soon discovered that monks were always men
and nuns were made for serving priests.

The convent doors closed,
she chose sickness instead, the secular path of withdrawal.
Insulin syringes and admonitions of "no candy"
formed walls against a world unannounced and uninvited,
a bothersome neighbor forever knocking at her door.


The little girl now seldom thinks of Mary's feet.
She's more concerned with wrinkles beneath her eyes
and her son's face in which she already sees a man.
At nights she prays to anything that may be listening:
"Spirit, God, Angel, Guide,
heal my body so that I might better reveal
my excellence to the world."

I'm yet a thought within her mind,
but growing smaller now.
Soon I'll be a relic of a thought
from some other life sleeping deeper and deeper underground.

The Final Decision

Two months ago, I was still wondering whether I should proceed with dialysis. I really didn't know if I wanted to go through with it. For about a year, whenever a doctor would bring up the subject, I'd say that life is hard enough as it is without a partner, but I sure didn't want to face dialysis alone. The doctor would then press me, asking me what I planned to do. "I am expecting a miracle," I'd reply. "And if that doesn't happen, I'll just die."

Around this time, I had a heart-to-heart with Aaron and told him I really didn't want to do this, that perhaps I'd be better off dead. I saluted and said, "Ready for re-assignment, Sir!"

But then I realized that my re-assignment would be a return to the same assignment. I've lived with chronic illness all my life and damn if I'm going to leave this life and be plopped down in another life of illness! No way! This message came through with such certainty, like a lightening bolt from heaven.

I continue to see myself as healthy and vibrant and strong. I sure as hell would love to manifest this during this lifetime, but I will not be denied in the next because I wouldn't see things through to the end this time around.

I can come up with hundreds of reasons to go on living--everything from sunshine and birdsong to my son, creative ventures, and the hope-springs-eternal possibility of romance. Hundreds of reasons to continue with dialysis. But even if all of these were to vanish, I have my ace in the hole: the card that says, "You can't fold yet."

Thank You, Cousins!

A big thank you to all my cousins in Minnesota who have been sending me loving, supportive e-mails. This means an awful lot to me.

Because I lived in Wisconsin as a child, I didn't get to see my cousins as much as I might have liked to, but the times we did spend together stick out in my mind, especially the annual summer picnic in Ormsby.

As our mothers and fathers grew older and died, our generation didn't continue with the family picnics. Instead, the November foeden party became the new get-together.

I attended my first foeden party this past November and had such a fantastic time. I so enjoyed all my cousins! I made a promise to myself that I would do everything I could to attend every year from here on in.

Right now, travel of any kind seems daunting, but I sure hope to see you all in November. I look forward to receiving in person all the hugs you're e-mailing me now!

Same Weight I Was in High School

A few days ago, I told Dr. Butman that I'm the same weight I was in high school. I was 126 then, and without the two liters (four pounds) I carry inside my peritoneum membrane between exchanges, I would be 126. Right now, with those two liters, I generally weigh in at 131 or 132.

I've probably been carrying around extra fluid for years because, before I went on dialysis, my weight fluctuated from 138 to 155. Extra fluid, of course, put a strain on my heart.

Dr. Butman responded by saying how his patients so often tell him that putting on weight is associated with aging. "But they haven't grown any taller since high school, have they?" he retorted.

Just as with so many things, weight gain is something people don't want to take personal responsibility for; they'd rather make excuses. All I know is that if I, who has exercised so little in the past several years because to do so gave me chest pain and shortness of breath, if I can be the same weight I was in high school, then certainly people who are able to exercise without chest pain can do the same.

Crazy Weight Swings

Yesterday I gained more than seven pounds from the time I got up to the time I went to bed. All I can attribute this to is eating two chicken sausages. Too much salt, resulting in water retention and fluid overload.

Last night I hooked up with one green bag and one red. Green is for when things are stable, and red is for fluid overload. (Yellow is for a dehydrated state.) Generally, I use one green and one yellow, and that keeps me fairly stable. Red is pretty powerful and draws out a lot of fluid and a lot of toxins. This morning I woke up seven pounds lighter.

I'm sure there are those who are reading this and thinking how wonderful it would be to drop seven pounds while you slept. Sounds like something you'd see on an infomercial. Well, let me tell you, it's definitely not the way to go.

First off, it stretches my skin. My belly becomes distended when I'm in fluid overload, and then when it's relieved, the skin is lax. And secondly, that stretching causes my whole body to ache. I just feel tired, worn out, almost beat up after such a swing.

No, folks, the best way to lose weight is to eat right and exercise. Not like this.

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

Last night, March 16-17, I lost 11.4 pounds. I went to bed at 142.6 and woke up at 131.2. Really don't like how I feel after such a wild swing.

The Desert Personality

"People disappoint, nature never does," a strange and beautiful person once told me. This comment prompted me to write a poem, which follows this entry. Over the years I have often taken an overheard phrase and crafted a whole life around it in a poem, as is the case here.

Though in darker times I have focused on the first part of that sentence, I have been much more acutely aware of the latter half as of late. Each morning when I leave my apartment, I am struck by the beauty of even the most subtle of nature's displays. The sunshine, the flowers in the courtyard, the dew, birdsong. And I think back on my entire life and realize that never once has nature disappointed me. Even the seemingly post-Armageddon desert around Palm Springs has its hidden charm. Yes, every time nature has delighted, if not knocked me over with wonder.

"Why is this?" I thought to myself. I've come up with a few answers:

* I don't expect anything from nature. And because there are no expectations, it never disappoints.

* Nature carries with it such a divine, peaceful feeling of being-ness, whereas human action is so concerned with doing and achieving. The frenetic energy of the latter and the ensuing emotional drama created by all this fussing necessarily result in disappointment for all concerned.

I do realize that some people are disappointed with nature. I met one at Yellowstone National Park in the summer of 2006. Aaron and I were viewing Mammoth Hot Springs when a German tourist voiced his dismay. The colors were not as vibrant as he had expected them to be, the water was not as bubbly as he had wished. Aaron and I both thought this was funny: complaints about grandeur. A definite sign of a "desert personality."

Here now is the poem, written so long ago:



The Desert Personality

“All I want from life is solitude,”
he told me one morning after sex.

“Perhaps I’m invisible,” I thought,
“A non-entity with a mind,
something I strongly suspected as a child.”

There was no bedroom mirror
with which to test my hypothesis.
I realized he wasn’t intentionally hurting me,
since I wasn’t really there after all.
And if I were, perhaps I was an accomplice in his solitude,
someone to share his vision of silence in the dunes.

As it were, all I had were his words
of the disappointment humans had brought him
and the peace only a hermit can know.

He’d made it clear often enough
that he didn’t need me or anyone else.
For years, I pretended the same,
telling myself he was just so much fun,
easy to love, easier to leave.

“Don’t expect anything and you won’t be disappointed,”
he often advised.
Years later, he said he hadn’t meant this to apply to him,
though he was the case with so few exceptions.

A few times he told me about the woman he had loved,
how often he thought of her body,
how much he missed her breasts in his hands.
He’d lived with her for seven years,
something he wouldn’t consider doing now,
since he wanted to be alone,
with his rabbit,
his dog,
his parrot.

We’d spent maybe a month together,
if all the hours were laid end to end.
It’s only right he should want her, I lied to myself,
though a decade had passed
since he had held her breasts in his hands.

I wonder if he’d told her, too,
that all he wanted from life was solitude.

Don't Argue, Don't Reason, Don't Explain

My mother is fast descending into a twilight zone. She is having trouble concentrating and remembering things from moment to moment. Each time I see her, she seems to have gone deeper into the dimness.

One bright spot--really the only bright spot I have seen since she moved to California in January of 2008--is that she's writing in a journal. I bought her a blank journal for Christmas because she was writing bits of her past in the notebook in which she keeps track of doctor visits, upcoming events, and how to do simple tasks like bathing or turning on the heat. I said that she should devote a special place to her writing. Of all the many things I have encouraged her to do, writing seems is the only one she has taken to heart. And encourage it I do. I tell her that this is a great way to keep her mind involved.

Now when we get together, she asks if I'd like to hear her read from her journal. This helps tremendously, since her conversational skills have really deteriorated. Once I have asked her how she is and what she did during the week, she falls silent. This way, with her journal, she reads aloud to me and I ask her questions about what she's written, ask her to fill in details, and she makes notes in the journal that she says she'll flesh out later.

Last Sunday we sat in a coffeehouse while she ate a slice of cheesecake and read aloud of threshing cooperatives and her high school days. She wrote that she and her friend drove her brother Max's car to the last six weeks of high school, as he was serving overseas.

This didn't add up. My mom was born in 1921, which would mean that she graduated from high school in 1939. And she collaborated that, saying that she began her college classes at Gustavus Adolphus in the fall of 1939. So I asked if Max had joined the service prior to Pearl Harbor. She said, no, that he had served in 1944. I wondered how he could have given her his car to use if he hadn't gone overseas for another five years. She didn't understand.

I drew a timeline with her birth, her high school years, Pearl Harbor, and Max's service. She still didn't understand that high school and Max's absence weren't concurrent.

I said that this would be like me saying that Aaron had given me a beautiful Mother's Day gift while I was in high school, but Aaron hadn't been born yet. She didn't understand, but she knew she wasn't understanding something that she should have understood. When I realized this, it was too late. She was already near tears.

I felt so badly for her in that moment. She must be aware that she's slipping, but doesn't know what to do.

I need to remember what the UCI Medical Center psychologist told me about dementia: A-R-E. Don't argue, don't reason, don't explain.

From here on in, I will simply listen to her read, maybe ask a few questions. But if she has trouble answering them, I need simply say, "Please, Mom, read more."

Rogue Waves

Gerard d'Aboville, who rowed across the Pacific in 1990, writes of brushes with death that blindsided him in his account of his journey, "Alone." Times when the weather was good and the ocean was calm, and then a wave comes out of nowhere, and he nearly loses his life.

I, too, have had some rogue-wave experiences lately, most recently Wednesday night.

I had been going along, feeling fine, blood sugar and blood pressure under control. Then a rouge wave struck. I tested my blood sugar, and it was 599. Normal is 70-120. I haven't seen a number like this in I don't know how long. I gave myself a bolus of insulin, then tested again in an hour. By then it was off the scale, somewhere above 600. More insulin, then more and more and more. Still 600. Finally, at 4 a.m., my blood tested at 199. High, but acceptable. In total, I had taken 52 units of insulin to bring my blood sugar down, more insulin than I usually take in two days. During the night, I had experienced chest pain and pressure, due to the high blood glucose, and severe leg cramps and nausea. All day yesterday I felt like I had been beaten up, hit by a rogue wave.

Today the seas are once again calm, and so I am at ease--until the next brush with death.

A Thousand Little Abandonments

Recently I read "Alone," the tale of Gerard d'Aboville, the Frenchman who at 46 years old rowed across the Pacific Ocean from Choshi, Japan, to the mouth of the Columbia River. Hard to believe, but he did it.

Throughout the book I was impressed in the many ways in which his struggle parallels mine, even though the venues are quite dissimilar.

Here is an insightful passage from his book:

"My motor is not so much my muscles, but my stubbornness, my tenacity, my loathing of discouragement, which I have to fight day after day, hour after hour, stoke after stroke, as each arc of the oars grows more difficult than the last. I am a resistance fighter in a war I invented for myself. The enemy is me, with all my physical shortcomings, my temptation to give up. That temptation, by the way, does not consist of sending up my distress signal and throwing in the towel, as one might think. It is the thousand and one little daily temptations that lie in wait for us all: to get out of bed five minutes later than usual, to stop one minute before the bell rings signaling the end of the working day; to pull a trifle less vigorously on the oar next time; even to stop shaving. These are the kinds of minor abandonments, the castings off just a little here and there, which together, ineluctably lead to the ultimate surrender. And it is these same minor, ridiculous battles, these repetitive, fastidious, inglorious battles that, if I persist, will eventually lead me to victory."

Every time I go into the PD clinic and see other dialysis patients, I come away with the message: Don't succumb to minor abandonments. The temptation to ignore healthful eating habits and just eat whatever I damn well please. The temptation to stop caring about my looks, to shun the little bit of makeup I do wear, to start donning sweat pants. My friend Heather recently quoted a comedian who said that nothing signals giving up like sweatpants. And yet sweatpants is what all the PD clinic staff recommend to hide the four-pound pouch caused by the dialysis solution that is left in the peritoneum membrane between exchanges.

All I am exposed to are dialysis patients who, in so many little abandonments, have given up. They may not see it that way, but it's clear to me. I think of the insulin-dependent diabetic who has received two kidney transplants and continues to get toes amputated yet eats Kentucky Fried Chicken, pepperoni pizza, and sheet cake with gobs of frosting. Or the woman who must weigh 350 pounds and so is confined to a wheelchair. Actually, all of the dialysis patients who attended the two support group meetings I have attended have been overweight or obese. And my friend Bob, whose father is on hemodialysis but is actually extremely thin, reports the same: patients bringing cheesecake and candy and buckets of fried chicken into the dialysis center.

I am not tempted by food, and I have enough self-worth to want to look my best, so I don't see this being the route I follow. But I must be on guard against any thought, word, or action that undermines my ability to be in absolutely top form.

By eating an organic, healthful diet; by wearing a gray wool suit or a coordinated skirt and blouse; and by projecting an upbeat look rather than the dejected, worn-out, beaten-up looks I see so often in other dialysis patients, I show to the world that I am the person who is a fantastic candidate for a kidney transplant. And if, like Gerard, I persist, I will eventually have my victory.

A Prayer of Thanks for All the Prayers

If I had a dollar for everyone who has told me that he or she is praying for me, well, I'd have enough to buy a new kidney!

And it's such a range of belief systems--from fundamentalist Christian to stalwart Minnesota Lutheran to New Age, Church of Religious Science, and Taoism--that I feel I have all the bases covered. Even a few agnostics are giving prayer a whirl just for me. This last group really impresses me; they're like vegans who start eating meat to support their friend's struggling cattle industry. A classic case of an Aristotelean hierarchy of goods.

For all these prayers from beginners and old pros, I am very thankful. I know that concentrating attention on a desired aim in a loving, positive, life-affirming manner is extremely powerful. The power that can shift the thinking of those who are deciding my fate. So thanks to every last one of you for your prayers. Please keep them coming!

E-mail of Resignation

Well, I finally did it: This evening I e-mailed my department chair and told him I would be retiring at the end of this semester. I have thought about leaving, but now I have put those thoughts into action.

I have been teaching at Cal State since August of 1987. Not every semester, but every semester for the last decade. With end-stage kidney disease and congestive heart failure, I can take a disability retirement. That works out to almost exactly the same amount of money that I take home when I teach two classes per semester. In other words, not much. Enough to pay the rent, buy groceries, and get a cup of coffee now and then. But not enough for gas, truck repairs, Internet service, the phone bill, and Netflix. So I'll have to do something to make ends meet.

But more importantly, I have a sense of urgency. It's now or never. If I ever want to finish writing the books I've started about Shizeng and Mike, I better get to it. It isn't often that the universe drops such true-life events in someone's lap. A qi gong master from Beijing who could heal the sick but who sucked their souls in the process. A tale of sleeping with the devil. And with Mike, it's the Greek tragedy of a soul surfer with dissociative personality disorder. Internal hell amidst exquisite coastal beauty.

Of course, I also have a collection of short stories and several children's books I've already written that I want to see published. And I've written several chapters in each of two nonfiction works. Upon retiring I would finally be able to devote large chunks of time to all of these projects. That is, between doctor appointments!

Looking at the Stats

As Dr. Butman reminded me Monday afternoon, patients on the transplant list live longer than those who are not placed on the list. Well, of course. They have something to live for, some hope of getting off dialysis and leading a somewhat-normal life.

And it's probably true, if anyone took the time to do a study, that dialysis patients with a lifelong and/or romantic partner live longer than those without. And that dialysis patients who are financially secure live longer than those who are struggling to make ends meet. And that dialysis patients who do not have to care for a parent with dementia live longer than those who do.

So what can I do to soften these drags on my health? Here are a few things:

* Every night as I have done for years, I lie in bed before I go to sleep and say aloud, "Heidi, I love you. I love you so much." Sometimes I elaborate about the things I appreciate about myself, things I am sure a life partner would appreciate. This helps a great deal. Sometimes it's almost as if the man who is matched to me in all the world--wherever the hell he is!--is channeling himself through my body and using my vocal chords to say what he'd like to tell me. I'm sure many people who have been married for decades don't have that level of connection!

* About 10 years ago, I had a community-garden plot. I learned so much about vegetables, and I received such a sense of satisfaction from growing my own food. Now that I have more energy and soon will have more time, I signed up to be on the waiting list for the Wild Oats community garden a few blocks from my apartment. I know that working around growing things will boost my spirits. And the people who populate community gardens are often funky and fun.

* I have decided to leave Cal State and have made the news official by alerting my department chair. I have to fill out a lot of paperwork to make this happen, but I have put the ball in motion. This is a positive step in leaving a situation that has not served me well for a very long time.

* I am attempting to keep as connected with friends as much as possible with my limited availability.

* I am making a point of writing every day, something I will continue to do once I leave Cal State.

* I need to find a venue for showmanship. In my 20s and early 30s, I met this need through poetry readings. At Cal State, I often saw the classroom as a performance space. If I put my attention into The Wedding Poet, I'm sure I'll get wedding, anniversary, retirement, and other gigs. In fact, I landed my first paying gig--a June wedding for Jen and Brad of Anchorage.

* And last but not least, I will skew the odds, beat the statistics, by the sheer force of my will. Amen!

I'd Already Known

When I spoke with Dr. Butman this afternoon, I told him I was going to have a good cry. But I didn't. I had already received the message about the review board's rejection a full day before. Yesterday afternoon, the message had come through so strong, and it's then that I had cried. No, wept, sobbed. Crying again tonight would have been excessive, anticlimactic, and redundant.

Instead, Aaron gave me a hug, we got a coffee, and I walked with him to his night shift at the Paradise. I sat at his station, and he served me tortilla soup--yummy--and mac and cheese balls--decadent. Then I took a leisurely walk home, delighting in the evening sunlight and shadows, smiling at the flowering vines that hung playfully over fences, gazing at beauty large and small. I stopped at Portfolio Coffeehouse and looked at the photographs on the wall, as I had read that Sarah Vinci, a photographer I profiled for Long Beach Magazine, was featured. There I happened upon Victor, my next-door neighbor, and his friend Amy. A pleasant exchange.

A walk in the loveliness of early evening was so much better for my mood and my heart than tears. I've got to keep the endorphins zinging so that I'll be glowing for the UCLA transplant review board!

Would You Tell a Lie to Save a Life?

Would you tell a lie to save a life?

Anyone who has taken a philosophy course has run up against this question. Someone will give a hokey scenario such as a known murderer is looking for someone who is hiding in the next room, he asks you if you know where he can find his victim, and you lie to him, saying you have not seen the person he's looking for, thereby saving a life. This is often brushed off with: "Well, c'mon, how many times does that ever happen?"

Well, it's happening to me now. I am the person who is hiding in the next room, and my nephrologist is the person who knows where I am. He knows, and so do I, that patients who are on the transplant list live longer than those who are not because they're happier, they have hope, they have something to live for. Dr. Butman had told me this before, and he mentioned this again this afternoon.

I quipped, "Then why not lie to patients and tell them they're on the list even when they're not?" Of course, this would not be "ethical." But it could save lives. A classic case of the old philosophical quandry. Immaneul Kant may not have agreed, but I feel today as if I'd rather think I was on the list than know I'm not.

But I must remember that my case is on appeal. Though my voice broke slightly when I was speaking with Dr. Butman and though I told him I was going to have a good cry, I didn't. Instead I took a long walk, delighting in the play of evening sunlight and shadows. Besides, I had a good cry last night. I don't want to overdo it.

My Case is on Appeal

Upon arriving home from work tonight, I noticed that there was one message on my cell phone. Dr. Butman, my nephrologist, had called to say he wanted to talk to me about my transplant. Just late this morning I had spoken with Fe, the transplant coordinator, who had told me that she would be receiving a letter sometime this week with the Kaiser transplant review board's decision and at that time she would call me. Somehow Dr. Butman knew more than she did.

I called the PD clinic and was transferred three times before I could leave a message for the doctor. The last person I spoke with was Fe, who, voice pregnant with pauses, said that if Dr. Butman had called me, he should be the one to speak with me. Translation: I'd rather that he be the bearer of bad news.

Shortly thereafter, Dr. Butman returned my call. After some small talk about adjusting my blood pressure meds and an article he had copied for me from a nephrology journal, he told me the review board had rejected my application on the basis of the angiogram that was taken in 2006. He had known about the decision Friday evening, but perhaps hadn't wanted to break the news over the weekend.

The angiogram was taken, of course, before dialysis and the miraculous change in my energy level since then. As I wrote in a previous blog, I feel as if I have a new heart.

Dr. Butman said he hasn't given up hope, that he has already put in an appeal. Within a month, UCLA should call me about an appointment with the cardiologist on its kidney-transplant team. Dr. Butman feels that once the team sees how vibrant and spunky and full of life I am, I'll be given a second chance. Probably UCLA will want to get new data on my heart, which will mean a cardiac workup at UCLA.

I know that Dr. Butman is pulling for me, and I appreciate that. Aaron had been standing by while I was on the phone with him and commented that he spent a lot of time with me. Truly there have been several times when he's spent a half hour, even an hour with me. I sure appreciate that.

Some encouraging words: Dr. Butman said that he would not string me along, that he has not allowed patients to go forward with the process because he felt they were not viable candidates, but he doesn't feel that way about me. He also said that he had had a frail, 80-year-old patient who had been approved by UCLA and that I sure looked a lot healthier than he did.

So my case is on appeal. It's as if Dr. Butman is my attorney, and I have just lost the jury trial in the lower court. Now I have to wait for the higher court to review my case and see if it will grant me a hearing. Like a Death Row inmate, all I can do is wait, as my fate is in the hands of unseen others.

Listening 101

It's not that this is a new revelation, but once again, I am seeing how emotionally handicapped the vast majority of people are. Rare is the person who knows how to listen to another's pain. Instead, people adopt one of several strategies to make the person in need shut up.

1) Deflect attention away from the subject at hand and toward something that happened to the listener. You tell someone you have cancer, and she will tell you when her immune system wasn't 100 percent and she caught a cold.

2) Avoid eye contact, divert attention to something else in the environment, look bored, or gaze at the wall clock.

3) Tell the person in pain that others have it so much worse than she does. This strategy is especially effective at getting the person to shut up as its message is "You have no right to feel bad. Stuff your feelings."

I have gotten all of the above responses from the healthcare providers at Kaiser--people whose job it is to offer support! Even from a social worker! And it's not that I've gone on and on about how I'm feeling, only one or two sentences before I'm shut down.

I got the same response from the so-called kidney support group. The leader told me that many people in the group have gone through so much more than me, even before she even knew what I've been through.

Ironically, the posters in the patient rooms encourage asking for support from friends, family, support-group members, and healthcare professionals.

So, for anyone who is reading this, here is Lesson One in Listening 101:

If someone comes to you with an emotional problem, if she is sad or lonely or depressed, don't tell her that others have it worse than she does. She may agree with you on an intellectual level, but that is not where she is at that moment. Instead, simply listen, provide good eye contact, and if appropriate, hold her hand, stroke her back, or give her a hug. Do not respond on an intellectual, problem-solving level. Simply let her air her feelings. You are there to listen intently. Your presence is what is needed, not your advice. Later perhaps, after she has calmed down, after she has voiced things she has perhaps not been able to voice previously, then she may ask for your help in sorting things out or making a plan of action. But at this moment, hold back from doing that. It is not wanted at this time and will only be perceived as an attempt to make her shut up.

My Cabin in Winter

Here is my cabin in its winter splendor, photo courtesy of my dear friend in Nova Scotia, Helene. She watches over my northern estate in my absence.

This photo and the one below of the shed on the property make me a little sad. Or maybe it's just that I'm a little sad already. I wonder if I will ever see my cabin again.



The days of stashing my possessions in a storage unit and taking off on a three-month, back-roads camping trip across the continent are gone. Even if I could be gone that long--I am obligated to be seen at my PD clinic once every 30 days at minimum--how would I ever take along all the supplies? I'd need a semi following me with dialysis bags, IV pole, tubing, cleaning supplies, surgical masks, medical tape, gynecological wipes (that are used following hand-washing to kill more germs), paper towels, clamps, anti-bacterial caps and ointment, and hydrogen peroxide. At least 50 pounds per day! For a three-month trip, that would mean hauling 4,500 pounds of supplies.

And yet this is how out of touch people are when I say I feel that everything I enjoy is being taken away from me. The dietician at the PD clinic said there was no reason why I couldn't be gone for a month. She just doesn't get it. Sure, if I were going to be in one location, I could have the supplies delivered there, but not if I'm traveling from point to point and living in my truck--which is what my plan had been up until a few months ago. I had planned on traveling in my vehicle, writing and editing from the road, like I did in the summers of 2005 and 2006. How profoundly things have changed!

A Visitation from a Long-deceased Friend

On my way out of my apartment building yesterday, I met up with the spirit of my long-deceased childhood friend--my canine companion, Taffy.

I had already gotten to my truck, then realizing I had forgotten something inside my abode, I went back to fetch it. As I walked down the stairs from the central courtyard to the sidewalk, a dog with Taffy's compassionate, brown eyes and her golden retriever-mutt coloring appeared. Her owner, a jaunty guy in his mid-30s kept smiling and saying that in all the years he had walked Brandy past this apartment building, she had never before stopped and ventured up the stairs.

As her owner carried on in this vein, so incredulous that Brandy should break habit, I stroked her soft head and petted her sides, all the while deeply touched by how adoringly she gazed at me. I told the owner of Taffy and how Brandy seemed so much like her.

I so wish I had asked if I could take their picture, but I didn't. Perhaps I'll see them again if I leave my apartment about the same time some morning.

I had the intense feeling that, not only did Brandy look and act like Taffy, but that she was Taffy, my very best friend throughout childhood, truly my only friend. If not for Taffy, I'm sure I would have not survived to adulthood. Even now I'm getting a bit teary-eyed.

It was as if Brandy were sending me the message: Heidi, you need to get a dog. You need someone who will be there for you, unconditionally, every day, who will give you such healing love, love that you need for your emotional, physical, and spiritual well-being.

I think of what my nature goddess-friend Araia, who lives in a remote corner of northeastern Washington state, said about animals taking on the illness of their owners and releasing their owners from this burden. Like the old English concept of "sin eaters," people who were hired after a death to feast and by so doing symbolically and literally "eat" the sins of the deceased. But rather than for money, the animal does this out of a pure sense of love.

I have thought about a dog for many years. Aaron is readying himself for graduate school, and he needs to feel free to move to wherever he needs to go for his education and his career. He is the only person I've ever felt completely at ease with, 100 percent accepted for who I am. I deeply need someone to love and to be loved in return, someone who will listen and not judge, a life-long companion. Of course, wouldn't it be nice if such a man appeared, but the man who is inside my head and heart and dreams perhaps does not yet exist in the outside world. Perhaps Araia's words will prove true: "Heidi, once you get a dog, you'll never think about a man again."

******
It is now March 14, a week after I wrote the above. I now see this incident in a different light. The day I met up with Brandy was the day the Kaiser transplant board met and decided to reject my application. I now see Brandy as an angel with a message: "You are not alone, Heidi. You have beings who are looking out for you. We have sent this dog to you with this message of love."

I have been asking Archangel Michael to make an appearance, that it would really be wonderful to see him again. Perhaps this is how he manifested, quite a bit gentler than my first encounter.

Mid-day Exchange

Yesterday I was at the PD clinic from 8:15 a.m. to 4:30 p.m., getting lab tests, receiving training from a PD nurse, and seeing a nephrologist, a dietician, and a social worker.

Dr. Butman, my primary nephrologist, gave me a journal article on a clinical study of dialysis patients who were put on a "tidal" program, in which some fluid is left in the peritoneum after each cycle of the dialysis machine. This is the technique he is trying on me, as I continue to have severe cramping during treatment and keeping some fluid inside should prevent any rubbing of organs or of the catheter against the organs. That's the theory at least.

In turn, I gave him a copy of the book I wrote on traditional Chinese medicine. I have the feeling he will actually read it and, hopefully, it will open up his mind a bit.

Yesterday I was also hit with yet another layer to the whole dialysis thing: I now have to conduct mid-day exchanges in order to obtain better clearance of toxins. Most people are on either four one-hour exchanges per day or one one-hour and one 10-hour exchanges in a 24-hour period. I was hoping I would only have to do the nightly 10-hour treatment, but that means being dry (not having any fluid inside the peritoneum) during the day, which results in pain and a build-up of toxins during the course of the day. Keeping fluid inside all day has its problems too: The fluid is full of toxins that are re-absorbed into system if they are not drained out within eight hours, thereby defeating the whole purpose of dialysis. So...now I must be home every day around noon to conduct a mid-day exchange.

I am not happy with this situation, but I'm accepting it. Since I started dialysis on Feb. 2, I have been invited to maybe a half dozen events, all of which I have not been able to attend because I have to get hooked up to the cycler by 9:30 p.m. at the latest and some nights as early as 7. Now it will also be difficult to see friends for lunch or a daytime excursion. Basically, the only time I have available is 1-7 p.m. Not much to work with. Seems as if I will have to go out on disability if I ever hope to see anyone but my son and my doctors ever again!

White Light March 6

This Friday, March 6, sometime during the day, Kaiser's transplant review board meets to decide my fate. If its members give me the go-ahead, then my files are forwarded to UCLA to go before another review board. If the UCLA board gives me the thumbs up, then I am scheduled to see a UCLA doctor, who may order tests beyond those I have already undergone to get to this point. If I pass, then I am put on the transplant list.

So...please white light March 6. Any time during the day, if I should cross your mind, see the review board shouting, "Yes, Heidi!"

How I Used to Think of Dialysis Patients

The other day I had to tell someone that I'm on dialysis. She and her friend were horrified, with expressions that indicated they'd just seen a ghost. And yet to the objective eye, I looked good, even healthy. But what they saw was a cadaver.

I thought back to how I used to think of dialysis patients until just recently. I, too, had thought of them as cadavers, on their way out. Not that I had had that much contact with them, but the few instances stand out in my mind.

Shortly after I delivered Aaron--now almost 23 years ago--my doctor wrote a referral to a nephrologist. This memory is rather dim in some respects, but I remember that his office was in a hemodialysis clinic. The patients were abject and gaunt and much, much older than me, 50 years older. The nephrologist gave me a mildly inappropriate examination, palpating my belly over and over again, and resting his hand on my vulva as he spoke to me. I suppose I was the youngest thing he'd seen at the clinic in a very long time.

After that, I didn't see a nephrologist for maybe 15 years. In retrospect, no doubt a mistake.

I did have a student in one of my classes at Cal State in the late '80s who was a dialysis patient. She was perhaps in her early or mid-30s. When she explained her situation to me, I automatically thought of her days as numbered, even though she didn't look sick.

And then there was my friend Georgette's mom. I never met her, but I knew she was on dialysis. And then she died.

Now things are different, now that I'm one of the undead! I realize I have health challenges, and I know what the odds are--the average life span on dialysis is five years, the wait for a cadaver's kidney in So Cal is nine years. But even so, I sure don't feel that death is breathing down my neck.

An old lesson learned once again: Viewing the world from the inside out is a lot different than seeing it from the outside and imagining the interior.

Insight of the Week

Sometimes someone says something that just resonates in your very soul as the truth and you can't stop thinking about it. This is what happened this past Saturday at the Kidney Beings (cute, huh!) support group meeting.

I voiced my frustration and anger about the miscommunication, withholding of information, and insufficient training I have experienced with the PD clinic. One long-time support group member said she thought I had been treated shabbily and had been inadequately trained in PD therapy, but then added, "Just remember this, Heidi: Long after you are dead, everyone at the PD clinic will still have a job."

Boy, there are so many ways one can take what she said! In its tamest form, it means: Don't get yourself worked up about things you can't change. You're dealing with an entrenched system that is sometimes dysfunctional, but it is too big of a job to try to reform it. All you need be concerned about is your care, not changing the way an inefficient and faulty system operates because 20 years from now, it's probably still going to be operating in the same dysfunctional way.

A harsher way of viewing her comment is most likely also true: So many kidney patients die within a few years of beginning dialysis. In fact, the average life expectancy on dialysis is only five years. So, during the course of a career as a PD nurse or a nephrologist, one is apt to see many, many patients die. So perhaps they figure that inconsistent instructions or no instructions or the wrong doses of medications are no big deal, that if it's not this that kills a patient, something else will. So in other words, sloppiness is not something that needs to be prevented because there's so much that can go wrong with a kidney patient that some slip-ups could never be tracked back to a single cause.

Also, as in any profession, for most people, it's just a job, something to pay the bills. It's not a life calling or a mission or a labor of love. If I die or if 40 percent of the patients die in any given year, so what, we still get a check!

I am so grateful for Debbie's comment. It puts everything in perspective. Her comment makes it clear that I can't assume that the nurses and doctors are focused on their job. They could very well be like the grocery store clerks who, when you tell them you don't need a bag, they look right at you, say "OK," and put your purchase into a bag.

The bottom line is that I have to watch out for myself because no one else may be doing that. I have always been an ask-questions patient, an informed purveyor of medical services, but now I will have to increase my vigilance. Because that's MY job!

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.