The Pervasiveness of Violence Against Women

I was called for jury service today. On other occasions when I've been called, all I did was sit in the jury selection room on the sixth floor of the courthouse and wait. I was never asked to report to a courtroom. Today was different: From 7:45-9:30I sat, but then I was told to report, along with about 50 or so other potential jurors, to the third floor. The trial was for a Latino man in his mid- to late 40s who was charged with multiple counts of child molestation and rape of two minors between 1998 and 2007. The girls are now 15 and 17, so that would have made them 3 and 5 when the alleged molestation began. As the charges were read, I was close to tears.

The judge instructed the potential jurors as a group and individual ones as they were questioned that we should not pass any judgments based on the number of charges or the duration of the alleged abuse. She said that she had presided over a burglary case with more than 30 charges, but if the police arrested innocent men, they are innocent regardless of the number of charges. She also made it clear that this is a difficult case for most people to hear, but just because it is difficult doesn't mean it's impossible for someone to listen to the facts and decide upon the facts. She said that she is not asking jurors to be emotionless zombies, only to not allow their emotions to decide the case. All good instructions.

From 9:30-11:15 and then 1:30-3:45, jury selection took place. The defense attorney used maybe 15 of his challenges for cause or peremptory challenges to exclude jurors. Some of these challenges I understood as the candidates seemed to have a strong bias in the case. Others were harder to understand, but I suppose the defense attorney was looking for a certain type, whatever that was. The prosecutor just eliminated two potential jurors, a man whose uncle had been acquited of child molestation charges and a woman whose brother was serving an excessive sentence for burglary in Colorado. I was never questioned, and when 12 jurors and four alternates were finally selected and sworn in, I was free to go.

The two things that really struck me were how many people have attorneys or law-enforcement officers in their family and how many families have been touched by rape and molestation. Two men were excluded because their grandmothers had been raped and murdered; another man because his wife had been raped as a child and was still suffering from it; a woman whose grandmother had been murdered and her cousin raped, causing her so much trauma that she was institutionalized for most of her life; a school principal and a pediatric nurse who frequently dealt with children who had been molested; three women who left the jury box in tears because of the rapes or molestations of their family members, on and on and on. It really makes you wonder how many sick men are out there and what is it about our society that makes them so sick.

Floating in Wonder

This afternoon, while waiting for my physical therapy appointment, I became acutely aware of a state of being in which I am frequently present.

During these times, which are becoming more and more frequent, I am completely at peace, though I can see that others about me are distressed, sad, indulging in self-pity or worry, distracted, self-absorbed, seemingly oblivious to this beautiful world in which I am dwelling. I see their fear and pain, but it does not enter my field. I can feel compassion, which is at its highest sense, a connection of both common mortality and a wordless sense of immortality. During these times, for no apparent reason, a slight smile is on my lips, and my eyes are open, not just to take in the sights, but to apprehend a presence that seems all about me. For lack of a better word, let's call it God, though it is so pervasive and so subtle, I could just as well call it air or ether.

I am very easily entertained as sunshine and shadows and colors and shapes are all miraculous. I look at each person and immediately see deep inside him or her a common ground that we share, a spark of love and immortality, of star stuff, that the other human may only be vaguely aware of, burdened as so many have made themselves by the heaviness of this third-dimensional reality.

Sometimes when I am waiting for an appointment or during those rare times now that I have a leisurely cup of coffee at a coffeehouse, I look at each person in my view and send him or her a beam of love. My eyes become bright and I cover the person with love, then move on to the next. This is such a wonderful use of time, and I highly recommend it. It raises my vibration until I feel light, not quite weightless, but as if I might float up from my chair, as if the heaviness of the world is falling away.

Perhaps the best way to describe the state I am in is floating in wonder. I do not know how this has come about. I have felt it intermittently throughout my life, but it is more and more a part of my days. And for this I am very grateful--to God, to the air, or to the ether.

A Novel Idea

Concerns about healthcare reform prompted me to think of a premise for a novel: Healthcare for all eventually comes to mean limiting access to healthcare. At first, expensive cases such as my own are eliminated. Dialysis for anyone over 50, let's say, is no longer covered. Further limiting of access might prevent anyone over 60 receiving cancer treatments or heart bypass surgery. Slowly but surely, the weak, the sick, and the old would be phased out. But this is just the backdrop for the novel. The interesting question is: What kind of world would this create?

Through observing the world and its occupants, I am of the opinion that the weak, the sick, and the old serve a great purpose. They sometimes, but surely not always, provide the following lessons: Smile in the face of adversity. Be thankful for all that you have. Accept yourself as you are, with your supposed blemishes and shortcomings. Learn from the challenges that you face that others do not. Realize how precious each day, each second of life is. See the beauty that surrounds you in every moment. Apprehend the sense of the beyond that comes through suffering. These are a few of the deep lessons that illness and pain and the isolation and loneliness that they so often engender can bring to a person, if he or she is open. And sometimes, though most certainly not frequently, those who observe the weak, the sick, and the old are themselves aware of these lessons on a conscious level and so they allow true compassion to come forth.

In this novel, these learning and loving opportunities are no longer there. Consequently, those who are left, the supposedly strong, healthy, and young, undergo a moral degradation. They become more selfish, self-centered, petty, self-absorbed, then heartless, hurtful, and eventually self-destructive. All too late, those in charge, the ruling elite, the bureaucrats, the corporate masters, realize that through the elimination of those who were deemed unnecessary, they have destroyed something essential in society. Contrary to conventional eugenics, culling the herd of its so-called weaker members did not make the herd stronger.

Article in the New York Daily News

During my hospital stay in Brooklyn, I was interviewed by a reporter about my hip fracture and my appearance on an HBO documentary on organ donation and the organ shortage in the U.S. and Canada. The article has finally appeared in print. Please check it out:

Organ donor advocate Heidi Nye's shattered hip during HBO documentary exemplifies her cause

BY MIKE McLAUGHLIN
An organ donor advocate who traveled to Brooklyn to be interviewed for an HBO documentary fell and shattered her hip just before her debut - and now her injury could make its way into the movie.

The Unlucky Camisole

A year or so ago, I was occasionally seeing a man in his early 30s. We did a fair amount of kissing and finally made plans to take it to the next step. In the intervening days between making plans and the proposed execution of them, I went shopping and got a cute, black camisole, well, perhaps more like a slip, since it barely covers my upper thighs.



I was so excited about my camisole because I knew I could hide all the dialysis gauze, tubing, and tape beneath it. I would also figure out a way to squirrel away the insulin pump and its tubing. The camisole, I thought, would make me look sexy and like a woman without any encumbrances. Then if I just kept all my gear in place, hidden under my camisole, everything would go smoothly, and sex might be possible. That was my plan.

Well, the big day rolled around, and instead of finding some place to be alone together, this young guy instead wanted me to sit at a coffeehouse and watch him work on a script he was writing about his life as a strip club DJ. I saw him a few times after that, but just in passing. If he wasn't any more interested than that, I really wasn't interested either.




Last October, I spent a week in Tuscon with a man with whom I had had some wild dealings years ago. Sometime in 2005, he tracked me down through a magazine for which I was writing. I was very excited to hear from him again and really wanted to see him, to rekindle the flame. But he waited and waited and waited--nearly three years!--to show up at my doorstep. By that time, I wasn't nearly as excited as I had been three years earlier. But we stayed in contact, and so I went to visit him at his home. He treated me as if I were his sister. Though we shared his bed, nothing happened. So I gave the black camisole a try. It did nothing for him, and he suggested I better put something more on so I wouldn't get cold. Strike two.

Strike three occurred today. Someone I've been seeing off and on for a few years. Someone whose company I really enjoy and who really enjoys mine. We've had a few polite kisses, nothing more, but recently we've talked about how much we like each other and how we'd both like a lot more. We made plans for this afternoon "to see what happens." So, once again, I pulled out my black camisole and carefully selected my outfit.

Around 1:30, he canceled our rendezvous, saying he had gotten a call and needed to get to a job site to fix a problem.

I just got a thought: Why save this beautiful camisole for a man? I'll just wear it any damn time I please because it makes me feel sexy and it's so slinky and delicious on my skin. So what if no one else sees it, no one else touches it and feels it and smells my scent on it! It's a pleasure and a delight for me. In fact maybe I should get a red camisole and a fuschia pink one and another in dusty rose or soft peach. I could prance around my bedroom, wearing a camisole, and no one would be the wiser. That might be a helluva lot of fun. No doubt much more fun than with an uninterested man!

You Know Not the Day Nor the Hour

Mike Riek, the love of my life, if love is measured by sexual intensity, will be dead four years on May 8. Mike was a surfing legend and by far the most beautiful body I had ever come in contact with. He was strong and virile and took lots of physical risks. He had no known health problems.

We were together four years, 1996-2000, and during that time I developed coronary heart disease and congestive heart failure, partly because of the constricted blood flow due to Type I diabetes and partly because of the strain of the relationship.

Mike had a surfing buddy who had a wife who was on dialysis due to Type I diabetes. The health problems and potential health problems associated with diabetes frightened Mike, so he used diabetes as an excuse for breaking up with me.

The irony, of course, is that this perfect specimen of a man died four years ago while surfing, and I with all my health challenges am still alive and kicking.

As is written in Matthew 24:36-44:

"But of that day and hour no one knows, not even the angels of heaven....As were the days of Noah, so will be th coming of the Son of man. For as in those days before the flood they were eating and drinking, marrying and giving in marriage, until the day when Noah entered the ark, and they did not know until the flood came and swept them all away, so will be the coming of the Son of man. Then two men will be in the field; one is taken and one is left. Two women will be grinding at the mill; one is taken and one is left. Watch therefore, for you do not know on what day your Lord is coming. But know this, that if the householder had known in what part of the night the thief was coming, he would have watched and would not have let his house be broken into. Therefore you also must be ready; for the Son of man is coming at an hour you do not expect."

And Matthew 25:13:

"Watch therefore, for you know neither the day nor the hour."

I know that a lot of people read this as an allusion to the rapture, the time when the good souls shall be taken on high and the evil doers are left to suffer on earth. Well, maybe, not I feel these passages have much more currency and meaning when they are considered in terms of death.

No one knows the day nor the hour of his own death or anyone else's. So often, those who seem to be the picture of health suddenly die, and those who bemoan their condition and gripe about how they're on death's door seem to hang on forever. This certainly was the case with Mike. And, damn it, I continue to hang on.

Peter Paternalistic

Here is the video that Robby Berman was filming when I broke my hip. The HBO crew was filming Robby filming. I was leaning against a gate across the street from the action.

This is truly a clever video. It's an analogy for the ridiculous prohibitions we have in this country, and every country except Iran, in regards to compensating organ donors. In the video a mother pleads with onlookers to save her child from a burning building. No one steps forward. She then offers $10,000, and someone says he'll do it. Then Robby prevents him from saving the child, saying that he can't accept any money, that it's better if the child die than to save his life and be compensated for it.

This is exactly the situation with organ donation. So please watch it and send it along. Please spread the message that the law has to change. People are dying every day, waiting for organs. As it is now, living donors are not even given paid time off from work to undergo surgery and recover. This prevents many people from donating who cannot afford to take two weeks or more off from work unpaid.

Two Minutes of Sadness

While leaving physical therapy this morning, I was struck by two minutes of sadness. In general, I face the world wide-eyed and sunny. This isn't put on; it's not contrived or forced or faked. It's just that in the past few years, I have maintained a very positive attitude despite all that has come my way.

Once in a while, however, I am overcome with sadness. Maybe two or three times a year, I suddenly am overwhelmed and sometimes weep uncontrollably for a few minutes, then dry my eyes, feel refreshed and renewed, and resume my usual upbeat manner. These mood shifts don't seem to be prompted by any external circumstances. Rather, they come on as quickly and as unannounced as a cold breeze on a sweltering summer day.

These temporary dark clouds are perhaps an emotional purging of sorts. Every once in a while, the sadness that is somewhere deep inside me, of which I am not even aware, has to be vomited out.

This morning, the thought that pulsed through my consciousness for those two minutes was that I would never be loved, never have a lover again, never be fondled or kissed or spooned. I would live the rest of my days untouched. This thought did not spill over in tears, though tears were close.

Then I focused my attention on the leaves of a green plant and on the sunshine, and this darkness departed, surely to surface months and months from now, just as unexpectedly.

What the Doctors Don't Tell You

A few weeks ago, I had an appointment with my cardiologist. I asked him when the tingling, sensitivity, and pain in my chest from the triple-bypass surgery in November would go away. He said, "Maybe never."

Why hadn't anyone ever told me this prior to surgery? I feel it's a pretty significant omission to refrain from telling a woman that from now on, her breasts are going to hurt every time they're touched.

Granted, no man has touched my breasts for almost three years, so maybe it's a mute point. I like to think that some day I'll meet a man who would like to touch them and that I'd like him to touch them. (See previous posts about how many men I've met in the past decade who are afraid of, uninterested in, or incapable of anything approaching sex.)

Is it that doctors are not trained to think of their patients as sexual beings? Are they so narrowly focused on the surgical outcomes and the risk factors and the mortality rates that they don't consider the sexual, emotional, and social aspects of medical intervention?

Add to this sensitivity the incision pain from the hip surgery and the stagnant regions of my right leg that are so painful they cannot be touched, which are the aftermath of harvesting veins from this leg for the bypass surgery.

The photo shown here approximates the extent of my bypass scar and the smaller scars that were exit sites for tubes during surgery. From an online search, I see that some people's scars in time blend in with the background skin and are no longer red. I would like that to happen for me too.

Once again, I would just like to be free of all of this. I would like my body back, stripped of gauze, tubing, tape, a catheter, and an insulin pump. I would like the scars gone too. Because, damn it, I have such a nice body, especially for someone my age. I'm probably in the upper 10 percent of bodies of American women in their early 50s. And yet that fact is obscured by all this medical stuff and all these surgical scars. It's just a real shame.

Back to the Cane

The physical therapist told me yesterday that it's better to use the cane and walk straight than to walk unaided and hobble. She said the latter will mess up my back. So I'm back to using the cane. No shame in that.

Walking Unaided

For the past week or so, I have often walked about the apartment without the cane or the walker. My apartment is small enough that I am never more than a few inches away from a wall, a counter, or a piece of furniture on which to grab if need be.

Yesterday and especially today, however, I walked around outside without a cane, twice going to the end of the block and back. Sure, I'm limping, but at least I'm doing it.

I am so thankful for the progress I am making. My goal of walking normally for my UCLA transplant evaluation is certainly doable. I want to appear as strong, healthy, able-bodied, and vibrant as possible for that day of scrutiny.

Cayenne Pepper for the Feet

Poor circulation in my feet has been a challenge for at least a decade. It's why my Kaiser podiatrist granted approval for acupuncture. Of course, Dr. Mai treats a lot more than tingly, numb, sore feet, but for all the years I've been seeing him, he's always put needles in my feet to stimulate blood circulation. This helps, and I'm sure acupuncture has kept me from losing a toe or two.

Circulation in my feet and in my legs in general has been further compromised due to the triple-bypass surgery, during which veins were extracted from my right leg, and hip surgery, which entailed three incisions in my left thigh and buttocks. Following heart surgery, my legs were drum-tight for more than a month, due to severe fluid retention. This was extremely uncomfortable. Now, following hip surgery, I have experienced intense, shooting pain and a burning sensation in my feet, especially at night. The pain is so severe that it awakens me. Twice I have taken vicodin for the pain in my feet, not for the incision pain or muscle pain in my leg.

I pleaded with my nephrologist, my GP, my cardiologist, the diabetic nurse, and the orthopedic physician's assistant to authorize a sequential compression device for me. This is the device that surgical patients are usually hooked up to post-op to prevent blood clots from forming. It's basically two cuffs that are placed around the patient's calves and which continuously contract and expand. They massage the calves and keep blood circulating. They are fantastic, and throughout my hospital stay, I had none of the intense pain that I have experienced since coming home.

Though a few of these healthcare providers attempted to get DME (durable medical equipment) to send out the sequentlal compression device, they were told it was not a covered item. This is the ridiculous nature of having people who are bean counters make medical decisions. I emailed my doctors, saying that, surely, the cost of this device is far less than the cost of amputations. Unfortunately, though they agreed with me, they could do nothing.

So, I have gone the alternative route. I read that cayenne pepper aids blood circulation. A few months ago, I had mixed spice-grade cayenne and red pepper flakes with hand lotion and massaged my feet with this mixture, then put cayenne in my socks, and went to sleep, my tootsies invigorated by these warm spices.

This worked well for a while, but this last post-op episode was especially intense. So I bought cayenne capsules at a health food store. These babies have 40,000 heat units per capsule. That's much, much more than I would be able to ingest through spice-grade cayenne.

At first, I took the cayenne on an empty stomach. That was a mistake. I became dizzy and nauseated. From then on, I've taken it with a meal and seen immediate results. No more stabbing pain. No more getting woken up by pain. No more burning in my feet. True, the tingling is still there, but it's been there for a long time. This is defintely a step in the right direction.

The Social-Lubricant Lie

Maybe seven, eight years ago, it struck me that there is a type of lie I had never before considered. I call it the social-lubricant lie. Let me explain.

I was standing in front of the faculty mailboxes in the journalism department, sorting through my mail. Two colleagues were doing the same. One commented negatively on a memo that we all had received. I don't remember what the memo was about, but let's just say it was something small, like a reminder to clean up your workspace after you had finished copying or assembling papers, something like that. Perhaps the other professor said something like, "Oh, gawd, another memo! He's always sending out these ridiculous memos!" As if hit by a bolt of lightening, I realized that if I fed this negativity, this grumbling, I would not be honest, since to me it was a reasonable thing to ask to clean up after ourselves. The social lubricant lie would have been to say something like, "Yeah, he's a real pain, that old memo-writer!" Instead I just smiled, said, "Oh, well," and walked away.

I began to give some real thought to social-lubricant lies. I began to see all the energy and words and drama wasted over them, how much of human interaction consists of these disingenuous statements.

They are not the same as so-called white lies, though perhaps white lies are a type of social-lubricant lies. White lies are more volitional; the person uttering them knows that they are not true and yet says them supposedly to protect someone's feelings. Most social-lubricant lies are on a much more automatic, unthinking level, as they are often just a parroting of what others are saying without any inner reflection as to how one actually feels about the subject.

Since that day standing in front of the mailboxes, I have been attentive to my own interactions with others, taking care not to engage in this pervasive type of lie. And this doesn't mean calling others out about their infractions. It just means conducting myself in such a way that I am not violating my own truth. This can be done in a cute way, as I did those seven, eight years ago in the journalism department, simply smiling and offering a noncommital "oh, well," thereby not offending anyone, but not feeding their criticism either.

So just as an exercise, go about your next week attentive of the social-lubricant lies that are everywhere to be found. Very often they are linked to a complaint. So whenever anyone complains to you about something, hold back for a second and determine how you really feel about the subject. Is it worth complaining about? Is it really all that awful? If not, why not simply smile to the complainer and with your eyes bright and cheery, say, "oh, well"?

An Outside Chance

I spoke with a UCLA transplant coordinator this week who told me that there is a small chance that Janet and I may be compatible. That is, even though she is an A blood type and I am an O, she might still be able to donate one of her kidneys to me.

Remember that, in general, O is the universal donor, but O's can only accept from other O's. The coordinator said that some A's are of a rare subtype that allows them to donate to O's. She said this is fewer than 6 percent of all A's, but still there's a chance Janet and I may be compatible.

That would be great, as it would make things far less complex. Otherwise, we would have to do a kidney swap (someone else has an O donor, but is an A, as Janet is, and that person would receive Janet's kidney, and I would receive the O donor's kidney) or a donor chain, in which three or more unmatched pairs participate. Or I would have to look for another donor.

Another Perspective on Organ Donation

I saw Rick on Wednesday for lunch. I really like Rick because, well, he's a real guy, and I don't encounter too many real guys here in So Cal. Most of the men are metrosexual, a bit sissy, perhaps a bit too orderly or interested in decorating or into their clothes or junior-high-school-girlish about blood or dirt or moving some muscles.

Rick sure isn't metrosexual, and I really like that. He was a mechanic for Formula One race cars when he was young, then he became a licensed plumber. In the past few years, he got his general contractor's license and has taken all the coursework to get his real estate license. Basically, he knows how to fix most everything, and because he's a smart guy, he knows how to run his business, deal with all kinds of people, and manage his workers. He's funny and earthy and nicely built.

Rick and I met on match.com maybe three years ago. I feel I have been open to more than a friendship, touching him, rubbing his thighs, even giving him an hour-and-a-half, full-body massage, but he never made any moves. We've had a few kisses, but they've been very tame. There have been long gaps in which we didn't see each other, and during these times, he had relationships with other gals, and I had a few, a very few, one-time things with one or two men. But we were always excited to hear from each other.

I struggled a bit with how much to tell Rick about my health. Since we weren't intimate, I figured I didn't have to tell him anything. Then last November he called my cell phone when I was in the hospital. Figuring he could hear the hospital sounds, I told him I was recovering from triple-bypass surgery, brought on by insulin-dependent diabetes and that I wore an insulin pump. I figured that was plenty for him to assimilate without mentioning the dialysis too.

Rick was fine with my news, though I'm sure that, like most people, he didn't grasp what it all meant. How could he! Except for a few broken bones or sprains, he's been healthy and vigorous all his life.

But this Wednesday we met in person, for the first time since the Belmont Shore Christmas Parade and an after-parade party in December of 2008, just before I had the dialysis catheter surgically implanted in my abdomen.

So over gyros at the local Greek deli, I told Rick that I had been on dialysis since February of 2009. He seemed to take it well, though he didn't ask any questions and I didn't provide many details.

Rick did offer another perspective on organ donation that I had never considered. He said something like this: "Here you have all these crazy people who rape and murder and do all sorts of awful things. We put them on death row and we feed them and give them a place to live for years and years. They're of no use to society at all. If I were in charge, we'd take those bastards and give them a trial, sentence them to death, have a doctor examine them to see who could use their organs, and then bye-bye, fella, you're out of here. Next.

"When there's a sweetheart of a girl like you who's dying for a kidney, and we've got these bastards on death row taking up space, it's just not right."

Rick figured this would solve the organ-donation problem. But I don't know about that, Rick. Since 1976, we have executed 1,200 prisoners in this country. In 2009, the number was 52, and so far this year, it's 12. That's a small dent in the 100,000 people who are currently awaiting an organ. Of course, perhaps Rick would like to see a whole lot more people given the death penalty.

Poor Customer Service the Norm

The little story I am about to relate is not unique. Indeed, I suspect it is played out tens of thousands of times each day across the country. I offer it here because it is so common, and damn it, it shouldn't be!

I was grocery shopping this afternoon at the Vons at the Traffic Circle in Long Beach. I got some organic veggies and fruit, then saw that Ghiradelli chocolate was on sale. My son likes good chocolate, and his birthday is next week, so I figured this was a decent excuse. The bags of chocolate squares were $4.29 each or $3.49 each if you bought two or more. Plus I had two $1 coupons, which brought the price down to $2.49 per bag. S till pricey but doable.

When I looked at the receipt, I saw that I had been charged the $4.29 price. I politely told the clerk I was sure the price should've been $3.49. Instead of saying, "Oh, sure, ma'am, I'll have the bagger go to the shelves and check the price," she just frowned. The bagger reluctantly agreed to check the shelf with me in tow, though she rolled her eyes at the young clerk next to us as we passed him, telling him I was disputing the price. The other clerk also rolled his eyes.

Sure enough, I was right. The bagger didn't say, "Oh, I'm sorry. It looks like we made a mistake. We'll just have to go to the customer service desk to get you a refund." Instead, I asked her if she needed to take the price tag on the shelf to the desk. She peeled it off without comment. The so-called customer service person begrudgingly gave me $1.60 in change, without saying, "Sorry for the inconvenience" or "Thanks for bringing this to our attention." No apology from anyone. Just crossed eyes and frowns and a general feeling that I was really putting them out. Through all this, I was polite and said thank you several times.

What's more, the gal at the customer service desk told the bagger to put the price tag back on the shelf. She never indicated that someone was going to reprogram the cash registers or whatever it is they have to do to correct such an error.

I wondered, as I have often wondered, if these errors are calculated. Can you imagine 80 cents per bag multiplied by all the bags of Ghiradelli chocolates that Vons sells this week. And of course there may be hundreds of errors, which only compounds the money the chain would surreptiously cheat out of its customers.

Of course, the even bigger issue is this: Why are people so rude these days? Why do they take these kinds of interactions so personally? Don't they realize that if they were pleasant on the job, they would have a lot more fun on the job? Why is this rudeness so prevalent in our society? How did it come about? What can be done to reconnect people with their common humanity? What can be done to help them loosen up and have fun? Are we doomed to be a nation of overly sensitive, eager-to-be-offended children?

Getting my Skin Burned Off

For the last four days or so, I have noticed a discharge around my dialysis exit site.

Each morning I clean the site where the tubing enters my abdomen with antibacterial soap. Then I dry the area with a sterile gauze pad and douse it with hydrogen peroxide and antibacterial cream while wearing a surgical mask to prevent me from coughing or sneezing on the area. Then I dress it in sterile gauze and tape. The site is supposed to be completely free of pus, dirt, and blood. But my site wasn't.

It was also irritated and sore, so I went into the dialysis clinic to have it checked by a nurse. She said it was a tugging problem. The way I was taping down the foot-long tubing that is outside my body was causing the skin at the site to tear. She said she'd have to burn away the loose skin and blood around the exit site. Yikes!

So, while I held my shirt up to prevent my germ-infested clothing from contaminating the site, she burned away the affected area with silver nitrate. Though it burned and stung, I told her it was nothing compared to breaking my hip, so she should just do what she had to do and get it over with.

All day long, it's been stinging. But it looks a lot cleaner, which is the most important thing. Anything to prevent an infection of the tubing or, worse yet, of the peritoneum, the large sack within every person that holds the organs. I have not experienced this, and I don't want to. I understand that it is one of the most painful things around. So burning a little skin was OK with me.

Learning from Enlightened Beings and from Racists

Learning opportunities can be found everywhere you go. At least that's been my experience.

So often, people feel that they can only learn from those who are "above" them in one way or another. People who have more experience, more training, more degrees, more workshops and seminars and classes under their belts. True, such persons often have interesting tidbits to relate, but what I have found is that every encounter with another human being is a learning opportunity.

This past Saturday was a case in point. I attended a meeting of spiritual seekers, some of whom are familiar with every New Age writer and lecturer on the planet, it seems. One of the participants insisted that fear was clouding our conversation. No one else perceived this, but she was adamant.

Her judgment set off a battle of egos between her and two other women. Each time one of the women rebutted something said by one of the other two, I clearly saw this as an attempt to prove to the others and perhaps to herself that she was just as evolved as the other two. This went on for well over an hour until finally they agreed that they were all on the same level of no longer being human and being pure beings of light.

Wow, I was so tempted to challenge that, but really didn't want my ego to become embroiled in all this. The lesson they gave me: Sit back, breathe, relax, don't get involved in this battle of the egos, no matter how tempting that might be. Later, I thought how wonderful it would have been had one of these gals just stopped, smiled, and said something like, "We obviously aren't communicating well here. Something is amiss. How about if we just drop it, knowing that other topics will arise where we will be better able to understand each other. But for now, let's just be quiet and let other people speak. Why don't we just listen?"

The lesson from these gals is a big one, one that I require a reminder of now and then. How often during my life have I felt the need to justify my existence, to defend my position, to try to force others to see things my way! What a waste of energy! I am so thankful to these three that I could just sit there and let them duke it out without getting involved.

Besides, I feel that being a human being is a great gift. Sure, let's evolve our consciousness, but during this life, I'm a human, with all the wonderful feelings and emotions that entails. I was given a human body to enjoy the sensual wonders of this planet, and I was given human emotions to expand my heart to eventually embrace the world.

My idea is that speaking of "levels" is misguided. I have learned from racists and sexists just as surely as I have learned from supposedly evolved human beings. For that matter, I have learned a great deal more from rocks, trees, dogs, birds, babies, and beams of sunshine than I have from the majority of "spiritual" people I have met.






















And one of my most valuable lessons has come from a woman who openly admits she's a racist. From this gal I have learned that the best attitude you can adopt when someone slights you, betrays you, abandons you, hurts you, does you wrong, is to smile, shake your head, and say, "Aren't people interesting!" No attachment to their slights, no involvement in their drama, just shake it off and move forward.

Perhaps one of the biggest lessons is that there are no levels. People move in and out of understanding, in and out of insights, in and out of purity and the need for an emotional and spiritual tune-up. And the truth is that we can often learn so much more from behavior that we do not want to emulate than we can from those who are telling us how to be as evolved as they are!

Graduated to a Cane

Yesterday I graduated to using a cane. I no longer use the walker except when I first get up in the morning, as I am a bit unsteady.

I am improving every day. I am so grateful for this quick recovery. Soon I will leave the cane behind and be walking as I was before the accident.

How I Hate to Write that Check to the IRS

How I hate to write a check to the IRS. It's not that I want to keep it for myself. It's what that money buys that disgusts me, shames me.

If that check for $644 that I wrote this morning went to feed starving children or support starving artists or improve our national parks or clean our waterways or truly educate our country's future, then I'd happily send it off. But upwards of 70 percent of our tax dollars are in one way or another spent on killing, maiming, and causing horrible suffering.

First, figure how huge a portion of the budget goes to so-called defense (better known as killing). Add to that the debt incurred by defense spending and all the myriad costs associated with all our wars over the years (and that includes veterans' benefits and military pay and pensions). The chart shown here only accounts for these components of the total mix. Then think of the torturing done by the CIA and other spy organizations. And the government spooky business handled by any number of federal agencies, including the DOE (Department of Energy) and FEMA (the Federal Emergency Management Agency).

Of course, some of that $644 goes to things I would support, but most of it doesn't. Let's say, conservatively speaking, $400 of that goes to evil. That's $400 I would much rather donate to a charity than give to the IRS to allow the government to conduct its sinister business.

Every time I write a check to the IRS I feel dirty and ashamed, knowing I am one of a few hundred million conspirators, guilty of mass murder, torture, kidnapping, unjust imprisonment, untold suffering in so many lands throughout the world. I am guilty just as each one of you reading this is guilty.

Ten Years Ago Today

Ten years ago today--April 1, 2000--I was visited by Archangel Michael and his countless minions. The day on which he imparted the message "The strength that you see within me is there inside of you."

At the time he imparted these words, I was not feeling very strong. But in the ensuing years, with all the challenges I have faced, I see that he was absolutely right. I have frequently been amazed at how well I handle adversity. And I am so very grateful to Archangel Michael for reminding me what inner resources I have at my command.

Today seems like any other day, bright and happy. But still a part of me wonders if something truly remarkable will occur. I'm open.

Revising my Ideas About Jews and Jamaicans

Before my hospital stay in Brooklyn, I had, with only two exceptions, encountered Jews who thought of themselves as victims, and I had always thought of Jamaicans as easy-going, optimistic, friendly people. My 10 days in a Brooklyn hospital showed me Jews and Jamaicans who did not fit these molds at all.

First off, there was Robby. What a fantastic guy! In the hours we spent talking, he did not bring up victimhood once. What a relief! Also Robby has a sense of humor, he's compassionate toward all people, and he struck me as kind of sexy, especially in a sports coat when he was filming his You Tube video.

Except for Heidi Dorman, a friend in high school, who was a playful, funny kid, and Dennis Garfinkle, my son's hard-drinking, crazy friend from Azerbaijan, the other Jews I have met in my life were so into feeling sorry for themselves. They had gone to the best schools, their parents were well-off, they had been successful in business or in their profession, they had really big houses and drove nice cars, and their kids were going to prestigious schools, but somehow they thought they were oppressed. I thought, "Hey, if this is oppression, bring it on. I could sure use some."

So Robby was the first pleasant surprise. Then there was Dr. Fein, the hospital's chief nephrologist, who took such good care of me. He personally saw to it that I had the supplies I needed to do nightly dialysis. He was such a cutie, forever with a sweet smile on his lips. He wore a yamaka, which served to make him look even more gnome-like than he already did. Truly, if you were going to cast someone in the role of a gnome, you could do no better than this portly bundle of twinkling eyes and sunny disposition.

Then there was the yamaka-beclad orderly who rolled me into the ER. I was beginning to tear up because no one I knew was there to see me into surgery. He held my hand and provided such a loving, compassionate presence, assuring me that there were a bunch of people who were going to take very good care of me.

Then there were the awfully nice people that Robby arranged to visit me. Naomi and her son Avishai. The wonderfully deligtful rabbi. And Robby's roommate, Gavin, who took off a full morning from work to see me. So very thoughtful.

And last but not least, the Silversteins. Helen was my roommote, and I realy was taken with her 90-year-old husband, Lou. He had such a sweet air about him, but you could also tell he was capable of being a tough guy, as he had been the assistant managing editor at the New York Times. And their daughter, Anne, was so kind to me, as was their attendant, Lydia.

So I am very grateful for having met a number of Jews who not only did not think of themselves as victims but were actually having fun with life.

Which brings us to the Jamaicans, who were definitely not having fun. I have to say I have never received such terrible care in a hospital than I received from the Jamaican nurses' aides at Long Island College Hospital in Brooklyn. Virtually all the nurses' aides were Jamaican. All of them had big attitude problems and were extremely inconvenienced when I asked for their help. Aaron said that they got upset if you interrupted their chatting with one another. And they were rude and sour-faced when doing any aspect of their job. Part of the reason why I fell the second time was because I did not want to ask one of these unhappy women to help me.

My friend Ken said that they're probably unhappy because New York City is such a shock to their systems, it's so different from their homeland. Sure, that's true, but they made the decision to leave their islands. They need to regroup and find happiness here. In other words, they need to stop thinking of themselves as victims!

Thank God for Long Arms

So often during the past few weeks since I broke my hip I have been just able to reach some object. Had my arms been a little less long, these many, many objects would have been just slightly out of reach. Consequently, so many times during the past few weeks I have sighed a big "thank you" to God or whomever is listening, thank you, thank you, thank you for my long arms.

I Overdid It!

I had my first on-site physical therapy appointment this morning. Celia, the therapist, said I was doing so well, so she gave me a bunch of new exercises to do at home.

About 3 o'clock I took 500mg of niacin and a capsule of cayenne pepper. I had read that niacin is good for the heart, and my cardiologist recommended that I take it, saying he does too. And the cayenne is for the intense pain in my feet, a consequence of nerve damage due to diabetes. This was my first time taking both these supplements, and my body had an intense reaction. I was struck with nausea and eventually vomiting. I was dizzy and light-headed. Add to this severe pain upon any movement, which was probably due to my vigorous undertaking of the PT exercises this afternoon.

I tried to lie down and relax, but the pain was so intense. I was crying and moaning and on the verge of screaming. I eventually sat up and reached my cell phone to call Janet, my next-door neighbor. The call went to voice mail.

I struggled to take a few steps. I wanted to take some Tylenol, but the bottle was no longer on the kitchen counter. I'd have to walk as far as the hall closet, and I didn't think I could make it. Just then, Janet came to the door. What a relief!

Janet was so wonderful, rubbing my back as I vomited up lunch and the vicodin she found for me. After that bout, I was able to keep another vicodin down. She helped me hobble back to the bed and lie down. Each movement brought sharp pain. I also applied ice to my incisions and groin, where the pain was most intense. Janet brought over a heating pad that I used on my knee and neck. Heat is so comforting, so loving.

Before Janet left, she brought me the book I've been reading, Kurt Vonnegut's "Bluebeard." I read a chapter, then dropped off to sleep. Now I'm feeling so much better.

I'm so grateful for Janet and her tending of my needs. I'm just going to have to take those exercises a little less heartily when I do them tomorrow. I had been off all pain meds for almost a week; this was my first dose. I want to do everything in my power to avoid them altogether.

Back Behind the Wheel

Instead of asking friends for rides to the doctor, I thought I'd try driving myself. I figured it was my left hip that was broken, and it's the right foot that does the driving. Except for the inconvenience of folding and unfolding the walker and getting it in and out of the car, driving was no problem. So a little more than two weeks following surgery, I now am again enjoying the freedom of life behind the wheel.

A Glimpse at What my Career Might Have Been

During the few hours I was with the HBO film crew, I had such a wonderful feeling. Working with intelligent, vivacious, creative people in a collaborative setting. Wow! Something I always wanted to experience in my working life but never did. For the moments of brainstorming we had together, I am so grateful. I felt as if I were really using my smarts.

I remember my friend Heather saying of one of the positions she held in PR that she was using all her smarts. At the time, I knew that had never been the case in my career. The work had often not been sufficiently challenging, or the people I was working with were not open to new ideas or were dullards or were not that smart, or the way the organization was structured did not allow for creative input.

Of course, writing an article is intellectually challenging, but it's a solitary business. I do the research, the interviewing, the writing, the rewriting. The experience I always wanted, however, and one that I even prayed to have, was working with a team of intelligent, happy, enthusiastic, creative people with whom I would bounce off ideas and see my ideas put into action. That's what I really missed in my work life. I never felt as if my talents were being used, much less appreciated or compensated.

So for a few moments I saw what might have been. I suppose it still could be, if staying alive didn't require so much of my time!

Thank God I Didn't Go Skydiving!

A few days after my hip surgery I thought, "Oh, my God! What would have happened had I gone skydiving!"

A few weeks before I went to New York, my friend Othman asked me to join him and his friends for skydiving. I gave it serious thought, attempting to find information online about dialysis patients who skydived. I found nothing. My cardiologist and nephrologist advised against it on general grounds--the folly of anyone jumping from an airplane--but had nothing specifically to advice against it on the grounds of my heart or kidney. Dr. Butman said that I should probably jump dry (without dialysis solution in my peritoneum) in case the force of the landing should push the fluid into my lungs. Other than that, it appeared it would be no bigger problem than for anyone else.

In the end, though, I didn't go. I just had a feeling it might not be the right thing for me at this time.

Now I am so glad I didn't jump. If my bones are so brittle that I can break my hip from a standing position with no velocity, just think what might have happened from thousands of feet up. Besides one of the New York surgeons said that the mere impact of the parachute unfurling could have broken my shoulders.

Empathy for Those in Fear of Falling

Like many young and middle-aged people, I'm sure, I often wondered how an elderly person could die of a broken hip. I completely understand it now.

A broken hip is extremely painful, and if someone were already compromised by other illnesses or in a weak condition, I don't know as if she or he would have the wherewithall to get out of bed again. And with lack of movement comes the possibility of infection that could do one in.

So now I completely understand why the elderly are afraid of falling. I, too, do not want to fall again.

The Days After Surgery

Sunday, March 14--A great deal of pain whenever I tried to move. A doctor helped me walk from the bed to the guest chair, a distance of about two feet. He held me on one side and I used a crutch on the other. This was the limit of my pain tolerance. I waited a long time before attempting the trip back to bed. Naomi and her son, Avishi (sp? pronounced AH vee shy), stopped by to visit. They are friends of Robby.

Monday, March 15--A very friendly rabbi visited me. He said he was Robby's sister's rabbi. A beautiful bouquet arrived from Tim Howard in Sacramento. A reporter and a photographer from the New York Daily News interviewed me about my ordeal and my cause. That went very well. I made an attempt at physical therapy, but it was much too painful. I couldn't help but scream. I was moved to the third floor to be near rehab. At first I had the room to myself, but Helen Silverstein, who broke her ankle, arrived at about 1 a.m.



Tuesday, March 16--Went around the "gym" four times with a walker. Much improved over the previous days. Aaron arrived around 7:30 p.m. So good to see him! HBO put him up at a B&B about seven blocks away. Met Helen's husband, Lou Silverstein, former asst. managing editor of the New York Times, and their daughter, Anne, who is the editor of a union newspaper. Helen and Lou hired two women to take 12-hour shifts so that Helen would never be unattended. Aaron was such a help, setting up the dialysis machine and fetching things for me. Yet one more night of poor sleep.



Wednesday, March 17--Walked with walker without a spotter. Walked between my room and the rehab center. Aaron slept until 3 p.m.. came over afterwards. Moved to a private room. PT personnel very professional, compassionate. Especially liked James, the PT attendant, and Grace, the chief physical therapist.



Miss Brockman, a former UN interpreter and the wife of one of the hospital's psychiatrists, was a real fighter. She had been doing yoga previous to her hip fracture, and she believed that was responsible for her underlying good condition. I, too, was thankful for all the work I had done in cardiac rehab. Without those weeks of beefing up, this would have been much more difficult, I'm sure. Miss Brockman and I were the overachievers. We wanted to get better and get out of there. That was not typical of most patients I saw. Many refued to leave their beds or they refused to do anything once they got to rehab. One woman stood by the parallel bars and said, "I can't. I can't." Grace encouraged her, but she persisted in her naysaying. Finally, Grace said, "You've been in bed for six months. If you go back to the nursing home like this and say 'I can't' more than twice, they're going to leave you in bed, and you're going to stay there."

Thursday, March 18--While attempting to negotiate the mess of tubing and cables around my bed in the early morning, I lost my balance and fell. I screamed, "Help me! Help me!" Nurses came running. Such excrutiating pain. Even more than the original break. They lifted me onto a guest chair, where I sat until a stretcher came to take me to x-ray. For some reason, this was not a stretcher that went up and down, so getting onto it was torture, as was moving from the stretcher to the x-ray table and back to the stretcher. Once I was finally back in my bed, I stayed there. Waited to hear all day whether this would mean more surgery. Finally, at 6 p.m., a doctor told me that this was a splinter off the original break that could not be fixed surgically. I would have to allow it to heal on its own. So good to have Aaron with me all day today.

Friday, March 19--Fairly easy to move in the morning, but extremely painful in the afternoon. It's a matter of timing the pain meds just right so that they're at their peak effectiveness when I'm in physical therapy. Aaron explored the Met, Grand Center Park, and Times Square.

Saturday, March 20-Monday, March 22--Continued to progress in PT. Learned how to walk up and down the stairs with a walker. Left for the airport at 3 p.m. Left NYC on a United flight at 8:30 p.m. Arrived in LA a little before midnight. So good to be home.

Heidi, Daughter of Noah

On the stretcher on my way to surgery on Saturday morning, I fought back tears. Throughout this entire ordeal, I kept my spirits exceedingly high. But as I was being wheeled down to the OR, I suddenly felt lonely and sad. I wished Aaron were there. Or Felix or Robby. The attendant was such a nice guy. He held my hand and told me that there were a lot of people who were going to take good care of me.

Sure enough, about a dozen people were in the pre-op room, all for me. They'd opened the place up for my surgery, no one else's. Part of my celebrity status as HBO team member, I guess. This had been evident since Thursday, with introductions to the head of the ER department and Dr. Fein, the head of nephrology, who followed me throughout my stay, making sure my dialysis supplies were replenished. Also the PR gal had seen me in the ER.

Surgery was uneventful. Most importantly, I didn't feel the tube going into me or coming out, the latter of which was a traumatic experience after bypass surgery in November.

I got out of surgery at about 11 a.m. but didn't return to my room until about 9 p.m.--10 hours in recovery. Most of that time I dozed. Around 4, much to my surprise, Robby appeared. Felix had called the hospital earlier in the day to see how I was. When he couldn't reach me, he called the front desk and was told I was in surgery. Felix then called Robby, hoping he would pick up. Robby saw Felix's name displayed or recognized the number and so he picked up. He felt being with me was a higher calling than strictly observing the sabbath. I'm so glad he did. So good to see him! We talked easily about family and religion and what else I don't recall. There was just an easy, friendly flow to the conversation.

At some point, Robby had to leave to attend synagogue. Robby is making every effort to adhere to six months of thrice-daily prayers to honor the passing of his father, something that is often quite difficult to do, as the prayers are supposed to be said with other believers, not as a solitary ritual. What a beautiful, loving thing to have your child remember you in this way, through these acts of dedication and faith. Before he left, he asked if he could kiss me. Well, golly, sure, I said, or something like that. A sweet, little kiss, just what is needed following surgery. A hand hold before and a kiss afterwards. Perfect.

When Robby returned, he told me something that really warmed my heart--and still does now. At some point in the service, or whatever the synagogue time is called, the rabbi went around and asked if there were any prayer requests. Robby said that if I were a Jew, the rabbi would say this is a prayer request for the healing of Heidi, daughter of Moses. But since I'm not, the rabbi said this is for Heidi, daughter of Noah, as everyone is a son or daughter of Noah. I never thought of it like that, but, yes, that's how we're all related, all connected to one another.

Didn't Move for 48 Hours

Except for being moved on and off the x-ray table, spreading my legs to allow for the insertion of a catheter to collect my urine, and flinching in my sleep, I did not move one inch in the next 48 hours.

People who have never taken pain medication think that they kill the pain. Not true. At best they dull it so that it's bearable. Even with IV morphine, I was still feeling it, so I didn't move.

The doctors were concerned that I had been taking blood thinners and that surgery is not supposed to proceed until five to seven days after the halting of blood thinners. This would put my earliest possible surgery date as Tuesday, March 16. Five days and five nights lying in the exact same position. I just didn't think I could do that. Already my butt was sweaty and itchy and sore.



For the remainder of Thursday and all day Friday, the cardiologist, surgical team, osteopaths, nephrologists, pharmacist, and others I know not who they were kept entering my room, asking me questions, trying to determine what to do with me.

From ER, I was taken to a shared room with a woman who was playing her TV when I arrived at 11:30 p.m. After an hour or so, I politely said, "Excuse me, ma'am, but could you please turn it down just a bit?" No response. A half hour after that, I said the same thing, just as sweetly. She shot back, "Are you white?" I asked her if that was a problem and added, "Ma'am, I asked you as politely and kindly as possible. It's just been a very hard day, and I'd like to get some sleep." To that she gave an even angrier reply, "Well, then turn off your light and go to sleep." I told her I'd broken my hip and I couldn't move to shut off the light or reach the call button. I shared a room with Miss Winston for the next four nights. Often her
TV was going all night long--often while she slept!

Back home, I would never have been given a shared room, and I told the nursing staff I needed a private room to do peritoneal dialysis. The environment is supposed to be squeaky clean with anyone in the room wearing a surgical mask during hook-up and capping off. I was told that was not possible.



The crew got permission to film in the x-ray room on Thursday and in my hospital room on Friday. They got some good shots of me wincing with pain, then bravely regrouping to smile. They also got me adamently saying that this incident shored up my resolve to continue to attempt to change the law for compensating donors, not just for my own sake but for all the tens of thousands who are dying for a kidney. This fracture shows how my time is running out, and I have to work even harder to see that a law that is preventing donations is changed.

Felix planned to wait around to see me through surgery, if it were to occur on Saturday or Sunday. Bill and Ken were returning Friday night to Toronto. I kept talking to Felix throughout Friday. It sure looked like the docs wanted to wait until Tuesday. In that case, Felix would leave and come back by Tuesday, as the crew did not want me to be alone in the hospital. I thought this was so sweet but that they should do what they needed to do, since I had a lot of experience facing things alone.

Robby was a sweetie too. He said that he would break the sabbath to be with me, if my surgery were going to be tomorrow, but that he'd have to know by sunset Friday. Otherwise, he wouldn't answer a phone call until Sunday.

At about 5:30 Friday evening, I was told I had a definite answer: Surgery would be Tuesday morning. I called Felix and Robby. Felix said Jay, the research assistant in Toronto, was working on getting a ticket for Aaron to come to New York. He said several times, "Are you sure I should go?" I insisted he not wait around until Tuesday, so he left with the rest of the crew to fly home. Robby began his seder meal.

The sun set, while a doctor I had never seen before talked with me. He said he was more concerned about me lying around for five days and the risk of blood clots than he was about operating with blood thinners in my system. He felt the surgery should be done as soon as possible. This one dissenting voice turned the whole bunch of doctors around. Surgery was rescheduled for the next morning, Saturday, the sabbath, the morning after the film crew returned to Toronto.

Pride Cometh Before the Fall

On Wednesday, March 10, I arrived in New York City at the Wellington Hotel in Manhattan. The cab ride from the airport was on a freeway that did not offer many views. I did see some horse-drawn buggies lined up on the perimeter of Central Park, but that's about it. This will be important to remember, once you find out what transpired the following morning.

After settling in, I had tea with Bill, the director, and Felix, the producer. We went over the general plan for the following days. They wanted to film me hooking up to the dialysis machine and capping off from it, and Robby and me meeting with a lawyer to discuss a strategy for changing the law that prohibits compensating donors. They also wanted to film an interview of me while in a cab and stage my entry to the hotel with all my gear. Tomorrow morning they planned to film Robby filming his You Tube video on the immorality of not compensating donors. (Plot synopsis of Robby's video: People standing around a burning building, horrified that a young child is on the roof. Mother screaming for someone to rescue her child, to save his life. No one steps forward. She offers $1,000. A man steps forward, saying he'll do it. Another man gets in the first man's way, saying it's against the law to be compensated for saving someone's life. Hence the parallel with the prohibition against compensating kidney donors, who are also saving someone's life.)

That night, Bill, Felix, Robby, and I went out for Israeli food, similar to Lebanese, which I've had many times before. (Ken the cameraman was doing something else.) There was a hand-washing cubicle near our table for Orthodox Jews who wash before eating bread. Really enjoyed talking with these three intelligent men, brainstorming and feeling a part of the process.

A lot of fun to see how a documentary is made. It's certainly not just letting the camera roll.

My Baxter boxes had been delivered to Robby's apartment. The crew was amazed how much gear is required to keep me alive for six days.

The next morning, a local sound man met us at the hotel. During the cab ride to Brooklyn, where Robby was filming the YouTube piece, Bill interviewed me. The driver's GPS or dispatch kept interfering, so Bill had to ask the same questions up to four times, and I had to give the same impassioned answers up to four times. He said he'd snip it together so that it sounded right.

I spoke of how Robby was eager to work with me, as very few dialysis patients have as much energy and enthusiasm as I do. Most are very sick and very tired, many are depressed. "Dialysis patients are an invisible population," I said. "Unless you know someone on dialysis, you don't think about it. I want to do for kidney disease what was done for AIDS: Put a face on it. Dialysis is something that can happen to anyone, young or old. And with so many people overweight and obese in this country, many are bound to develop diabetes and hypertension, which are the two leading causes of end-stage renal disease."

Robby had said the same: I was chosen for this documentary because I am pretty, intelligent, and full of life. A perfect spokesperson. I felt good about my answers and my presence, and later the crew said I came off very well on camera.

I teased the crew: "Where's the hair and makeup gal? I was counting on her."

During the hour-long cab ride, I only had a few moments to look out the window; the rest of the time my eyes were on the interviewer. Remember this for later. Ken filmed me getting out of the cab and walking briskly down the street. Actually he filmed this three times.

For the next hour or so, I watched the filming on a street of beautiful brownstones. At one point, I leaned against a wrought-iron gate that I had thought was a fence. The gate gave way, and I fell onto a cement step. I was in a great deal of pain. Felix and Bill helped me to a stair so that I could sit down. Bill and Felix kept asking if I wanted to go to the ER, but I didn't want them to make a fuss. Bill figured that if I had broken anything, I'd be screaming, and since I wasn't, I should feel better soon.



When I attempted to stand, I could not, so Bill and Felix made a chair with their arms and carried me to the car. When they lifted me inside, I was on the verge of screaming. I was taken to an ER a few blocks away, where a bear of a paramedic said he'd have to get fresh with me in order to get me onto a stretcher. I put my arms around his neck and commenced screaming. Later I apologized for screaming in his ear. In typical New York fashion, he quipped, "That's OK. I've got another one."



Interesting side note: The paramedic's partner's photograph appeared in the NY Times the next day in an article about accidents caused by emergency response personnel.

The ER was absolutely crazy, like nothing I've ever seen anywhere but in a movie. All the curtained rooms were full, and stretchers were lined up as tight as possible in the aisles. Surprisingly, the personnel were some of the best I've ever seen. I received pain killers, which were much needed, as any movement set off sharp pangs. Felix stayed with me in the ER. I suggested he see if he could get permission to film in here. He insisted that we needed to focus on me, but he appreciated my concern for the film. I said that I have a video function on my camera, so after much insistence, he filmed and took a few still shots.

I absolutely knew, even in those moments of excruciating pain, that this would make for better film making, as it shows how vulnerable dialysis patients are. Many doctors told me over the next 12 days that, had I not been a dialysis patient, I would have fallen and been bruised, but that's it. Because of the brittle nature of dialysis patients' bones, however, my left hip was broken.

No Such Thing as Traveling Light

I have taken these photographs so that people begin to understand what living with dialysis is all about. Pictured here are the dialysis and diabetic supplies I have to bring with me for my seven-day, six-night stay in NYC.



On the futon:

* cassettes (tubing) for nine days--always figure for some faulty set-ups
* blood pressure cuff--I take my BP at least twice a day to determine what kind of dialysis solution I should use.
* scissors for cutting holes in the frame delivery pads (see below) in order to customize them for my insulin pump infusion set
* Lysol for cleaning the room in which I will do dialysis. I Lysol everything down when I'm setting up each night and when I'm changing the bandaging every morning. Sure, they've got Lysol in NYC, but I wouldn't know where to get it when I step off the plane.
* patient extension lines--These are vital, as I don't know how far the toilet is from the dialysis machine.
* extra batteries for the insulin pump



* prescriptions for meds in case they are lost or don't arrive
* PD belt for holding the transfer set in place while doing dialysis; can also be worn during the day to secure the transfer set under my clothes
* all my meds, each breakfast and dinner compilation put into separate snack bags and then all the breakfast bags and all the dinner bags put into their respective sandwich bags
* ponytail ties for securing the baby socks on my transfer set when I don't want to wear the PD belt during the day
* salve to diminish the scars from my heart surgery
* blood monitor with lancets, lancet pen for delivering the stick, alcohol swabs, and test strips for determining my blood sugar level
* extra test strips
* hydrocortizone cream to attempt to combat the redness around my dialysis exit site
* antibacterial cream for daily use about the exit site
* surgical masks
* letter from my doctor explaining to airline personnel why I need to take my dialysis machine onboard
* paper toweling, which I use after I wash my hands, as bath towels tend to collect germs
* antibacterial soap
* transfer set pads--The needle for the insulin pump easily comes out of my skin when putting on and off clothes and such. These sticky pads help keep the needle secure, but I have to cut a hole in them to allow for the tube to slip out while taking a shower.
* insulin syringes in case my insulin pump fails and I have to switch over to shots
* mini-caps for putting over the transfer set during the day when I'm not doing dialysis
* medical tape
* baby socks for covering both my transfer set and my insulin pump (a new one every day)
* approx. 30 pages of my recent medical history in case I need medical attention while in NYC
* blank patient records for writing down my BP, blood sugar, amount of insulin taken, readings from the dialysis machine regarding my treatment, my weight
* sterile gauze
* sharps container for collecting used syringes, needles, and lancets, as it is against the law to put them in the trash
* gynecological wipes--During the dialysis set-up, I wash my hands three times with antibacterial soap, then use a gynecological wipe to get any residual dirt or germs off my hands
* infusion sets--These are the mechanisms that deliver the needle into my body for delivery of insulin from the insulin pump. They need to be changed at minimum every three days; however, because the infusion-site needle so frequently comes out, I have to bring plenty of extra infusion sets.
* syringe, which becomes the insulin cartridge; the catridge is full of insulin, enough to last approx. three days
* alcohol swabs
* clamp for opening dialysis-solution boxes and bags
* insulin plus an extra bottle
* CDX II, which assists in hooking up the dialysis bags to the tubing



There goes one full suitcase of stuff!

Then I have to carry on the 28-pound cycler, pictured here with the three bags of solution I use every night. To protect the cycler and also to muffle its gurgling and farting all night long, I wrap it in two small quilts. Thank goodness, Baxter, the dialysis supply company, delivers the boxes of solution. But still, I'll have to lug those boxes from the hotel where HBO is putting me up to the hotel where I'll be staying afterwards. Quite the workout!

My biggest concern is getting the machine onboard. Air Canada had me in tears this summer. The personnel refused to let me carry the machine onboard. American Airlines was just the opposite, very accommodating, very kind.



And so, folks, yes, it is possible to travel on PD (peritoneal dialysis), but it's a chore. Just don't ask me to bring you anything back from New York! It won't fit!

Ooops, I forgot the bleached hand towels that I also need to bring. I put a new one on my lap each night and each morning during set-up and capping-off so that the transfer set does not come in contact with my bed clothes, which, like everything else, are carrying germs. This is why I lay everything out, so that I don't forget something. So add seven hand towels to that pile.

Diabetes is Much More Than Taking Shots

When the UCLA cardiologist said no to a kidney-pancreas transplant (but yes to a kidney transplant), he said that the risk of blood clots during surgery far outweighs the inconvenience of having to take insulin shots. Wow, this shows how little understanding even doctors have of what diabetes entails.

Last night's medical emergency would never occur if I had a functioning pancreas. Neither would the effects of sky-high blood sugar, like kidney disease, blindness, amputation, etc. I want a new pancreas because I don't want any more paramedic visits, hospitalizations for diabetic complications. Sure, it would also be fantastic to never check my blood sugar again, to never wear an insulin pump or take shots, to travel anywhere and at any time at a moment's notice without having to concern myself about keeping my insulin cool and how many syringes or infusion sets I need to pack.

But that is water over the bridge. I was given a "no" to a pancreas, so I have to accept that. A kidney is certainly better than nothing.

Thank God This Happened Before I Left

Last night I experienced very low blood sugar. By the time I was aware of what was transpiring, I was way too far gone. I stumbled about the apartment, managing to get to the refrigerator for some juice. I drank some grapefruit juice out of the carton, but perhaps this wasn't sweet enough. I began to panic, evidently screaming for help, because Jason, my next-door neighbor in the front half of the house, came to my door. I must have said something frenetic and incoherent, so he called the paramedics.

The fact that I can scream so loud that neighbors hear me is something that surprises me, since I have never screamed in my normal state of existence. It's interesting to note these things about oneself--that there are regions within us that we can access when we need to. Certainly a life-threatening situation like low blood sugar level is one of those times that the body and the mind bring out all that lies hidden during our everyday life in a final effort to avoid death. Last night was just such a time.

By the time the paramedics arrived, I was flailing about on the floor next to Rasputin's kennel. (I had put him inside it and locked the door as I always do. He loves the security and privacy of this small space. He loves being incarcerated when he beds down for the night!) I was screaming, too, and Rasputin was probably getting scared. He barked vociferously at the paramedics, but couldn't reach them to bite.

About the time the paramedics arrived, Aaron arrived home from his restaurant job. The paramedics measured my blood sugar at 40, and it had no doubt been much lower, since I had already had the juice. They stuck me twice in my skinny, little left wrist in an attempt to find a good vein. I felt this pain, though usually when I am given an emergency IV of glucose I am so out of it that I don't feel anything. The glucose began to revive me, and I was able to tell them my name, address, age, and birth date--information that is beyond my reach when my blood sugar is dangerously low.

I signed a release indicating that I did not want to go to the hospital. I felt dizzy, exhausted, beat up, but I was coherent. My body and clothes were soaked in adrenaline sweat, the sweat of death, of fight or flight, the body's final effort to kick-start action. I took a shower to rinse this smell of death from me, but it remained, and I smelled it on my fresh clothes in the morning.

Yesterday I only tested my blood sugar five times. I will have to make a concerted effort to check it much more often when I am in New York. It's one thing being home, where I have concerned neighbors and a wonderful son. It's another thing being in a big city where no one knows me from Adam.

I'm Off to New York!

I have long said that I should make a YouTube video about my life as a dialysis patient because the videos I have seen online don't give a very accurate picture. Besides, the technique I've seen displayed in these videos of hooking up to the dialysis machine is atrocious. Very unsanitary. No surgical masks, no hand washing. I wanted to set the record straight, as well as establish an online presence in case I need to solicit a donor.

Well, my vision is manifesting in a way that I never dreamed possible.

About a month ago, I read a book written by Sally Satel, M.D., who received a living donor kidney transplant before starting dialysis. "When Altruism Isn't Enough: The Case for Compensating Kidney Donors" really made an impression on me. This all made so much sense. Everyone else--surgeons, nurses, hospitals, insurance companies, kidney patient--were being compensated, everyone except the donor. Why not give the donor a tax credit, Medicare coverage for a few years, a scholarship, or some other government-facilitated incentive! This would be a way of thanking the donor for his or her great gift, and this would help solve the dire organ shortage. I won't go into every single argument that Satel makes, but each one is sound. There is no good reason not to compensate donors. (As the law is now, a kidney patient who gives a donor any "valuable consideration"--how's that for vague!--can receive up to a five-year prison sentence. Can you believe it--five years for attempting to save your own life!)

I wrote to Satel c/o the American Enterprise Institute, at which she is a fellow. About two weeks ago, I received an email response. I said I was interested in working toward changing this law that is responsible for many thousands of deaths per year as kidney patients languish on The List, waiting for a deceased-donor kidney that never comes. She put me in touch with Robby Berman, a journalist, activist, and man who splits his time between Israel and the U.S., attempting to encourage Jews to donate their organs upon death and/or to become living donors.

I met with Robby for coffee a little over a week ago when he was in So Cal on business. I made it clear that I was very interested in helping him ease restrictions on compensating donors. Now remember, this is not some rich kidney patients giving cash to poor people for their kidneys. This is government-regulated compensation.

On Friday morning, Robby called to ask if I could come to New York for the filming of an HBO documentary on the sorry state of the U.S. organ supply. Later I heard from Jay, the HBO producer. HBO is flying me to NYC on Wednesday morning, putting me up in a hotel for two days of meetings and filming, then I'm staying on for five more days to see a few sights. Wow!

This is certainly manifestation at its best. My dreams had been rather modest--a home movie-quality YouTube video that would educate the non-dialysis public and would give me a presence in front of potential donors. This is quite a bit more than I requested. I am very grateful.

Kaiser Said "Yes"!

The Kaiser kidney transplant board met last Friday to decide my fate. Unfortunately, I was left wondering all weekend, as the transplant coordinator didn't get a fax with thumbs up or thumbs down until this morning. I was given the OK.

Now it's up to the UCLA transplant team to say yes. After that, I will receive an official letter in the mail telling me I'm on The List. Until then, I'm still not on the list, but I'm inching my way closer.

Earning the Privilege to Wait in Line

Yesterday I met with Dr. Phan, my Kaiser cardiologist. The echocardiogram I had on Friday was normal. Hooray! And the size of my heart has decreased to a normal size as well. He followed the lead of my nephrologist, Dr. Butman, and gave me the go-ahead for the kidney-pancreas transplant.

This morning I met with UCLA cardiologist Dr. Le, who approved me for the kidney only. He said that though my heart is much improved, there is still the chance of blood clots during such a complex and time-consuming surgery when you are working on a patient with congestive heart failure. He said it was too risky. He also said that a kidney-pancreas transplant is the most arduous surgery of all.

I asked Dr. Le if I should think of this process as negotiations, that it is better to ask for a kidney-pancreas transplant so that the transplant board can say no to that but then grant me the kidney. He said it doesn't work like that, that the transplant team had asked for his opinion and that his opinion was that I am cleared to go, so they'll accept his opinion. He said he would fight for me if there was any hesitancy. Oh, I was so happy, and so was Dr. Le. He said he had really been rooting for me, but Kaiser had dragged its feet about getting me the bypass surgery. This was news to me. He said that Kaiser is all about saving costs. But in the end the surgery was approved, and I am feeling so much better because of it.

So now that I have approval from Drs. Butman, Phan, and Le, the next step is the Kaiser transplant board's ruling on Friday. Then the final decision is made by the UCLA transplant team.

So though I will probably have to wait a month or so for an official letter of notification that I'm on the list, I absolutely know I'm already there.

It is so funny how happy I am to now have the privilege of standing in line. Can you believe that! Most people are annoyed and angered by waiting in line. I have been working my butt off now for 13 months to do just that!

Is That You, Mom?

Last night, while Aaron and I were watching a movie on my laptop, the radio came on several times of its own accord. Each time Aaron turned the radio off, only to have it turn on again.

"Maybe it's Grandma," I said to him, then to the empty air, "Is that you, Mom? What would you like to tell us?"

No response. Hmmmmm....

One More Hoop to Jump Through

Yesterday I underwent the echocardiogram that is to decide my fate. The technician would not tell me anything, saying I had to wait to see the cardiologist on Monday. Whether I get on the kidney transplant wait list depends on the results of this test. I know that I did well because I've been doing so well at cardiac rehab. Thirty-five minutes on the treadmill at a 3.5 percent elevation and 3.8 mph. Then I lift weights and ride the stationary bike.

My appointment with my Kaiser cardiologist, Dr. Phan, is 1 p.m. Monday. He has to write a letter approving me for the list. Then on Tuesday at 9:20 a.m., I see the UCLA cardiologist, Dr. Le, who must also approve me.

The next step is one I had not realized was necessary until I spoke with Angie, the assistant transplant coordinator, late last week. She said my initial round of appointments with UCLA had been consultations only. In order to get on the list, I first must be approved by the Kaiser transplant board, which meets this coming Friday. Ugh! One more step in this protracted, Kafkaesque process!

Once I get the go-ahead from the Kaiser board, then Angie can make an appointment for me to see the UCLA transplant surgeon. If he's OK with me, then my case goes before the UCLA transplant team, which has the final say.

So, there are still a minimum of six steps left:
* Dr. Phan's OK
* Dr. Le's OK
* Kaiser board's OK
* Angie securing an appt. with the surgeon
* surgeon's OK
* UCLA transplant team's OK

In my worst moments, this entire business reminds me of Kafka's "The Trial," in which a poor soul tries to find his way through a system that is mysterious, frustrating, and forever putting more obstacles in his path.

But for the most part, I realize that this, too, will pass. Once I get through this, it will be over, and I will no longer think about it. Of course, the end is really the beginning. Once I am on the list, the search for the right donor begins.

So, once again, I ask anyone who is of O blood type to please consider giving me the gift of life.

And even if you are of another blood type or if you are not interested in becoming a living donor, please register to donate your organs upon your death. According to a spokesperson I interviewed at Donate Life California, only 6 million California drivers are designated organ donors out of a total of 27 million drivers. That's shameful! It's so easy: Just go to the web site and register today. You can even designate a recipient if you wish. (If you don't, your organs, if usable, go to the patients at the top of the wait list.) If you live outside of California, your state has a similar web site. If you just have the pink donor sticker on your driver's license, you are NOT registered, so please take a minute and do so.

Aren't a few clicks on your keyboard worth saving eight lives?

A Week of Friends

This week has been richly blessed with friends. Usually I do not see a one friend all week, sometimes not for weeks on end. But this past week, I had more events and more invitations than I could accept.

It all began last Friday with Othman. He and I attended a rally at Wilson High School. More than 2,000 people, mostly students, served as a counter-protest to a half dozen "Christians" from Kansas. The notable signs on the "Christian" side were "God Hates Fags" and "You Eat Your Babies." The funniest signs of the students were "Jesus Had 2 Dads," "Dog Hates Flags," and "If God Hates Us, Why Are We So Cute?" Ozzie and I both felt that it was a good exercise in free speech and the right to assemble for the kids, but that we didn't want them to think that just because they outnumbered the Christians that their point of view was necessarily right because there will be a lot of times in their lives when the majority is not in the right. Ozzie and I manuevered so that we could ask one of the Christians a few questions. She was extremely angry at first, but we remained calm and told her we did not wish to anger her, only hear her point of view. I said later that I was not very happy with how most people had treated these Christians, like wild dogs that they were poking, tormenting, with sticks. Other people would just rush up to them and begin shouting at them, not listening to what they had to say. Ozzie and I really wanted to hear her, though she called me a slut from the get-go and said other very un-Christian-like things. I calmly told her that I really wanted to understand the connection that she saw between Jews and homosexuality. She referred to some passage in the Bible that I had never heard of in which Jesus is surrounded by wild dogs and that the dogs are obviously Jews and homosexuals. I didn't argue with her, just listened. Ozzie asked if she was there to save souls. She said no, that the people here were already damned, she was just there to let them know God had already judged them.

Just before Ozzie picked me up for the rally, Heather called. She was in town, visiting her mom, and said she would be in my area in the next few minutes, could I meet her. I had not known she was around. Otherwise, I would have set some time aside for her.

On Saturday Bev and I were to attend a meeting about 2012, government spooky business, and everything in between. I had to cancel as I needed to take care of my plane tickets for LA to Halifax, where I am to fly to Paris in June with Helene.

Saturday night I was at Othman's birthday party. A good mix of people. Ozzie gets along with everyone, from an ex-Marine and an LAPD cop who works Skid Row to an aspiring CIA intelligence agent, activists, and school teachers.

On Sunday, Daphne was passing through the area so we met for tea. Daphne is such a wonderful gal. I met her about 10 years ago when I was working at UCI Medical Center. She's a web master.

Monday evening I met Kevin Malinowski, a former student, for dinner at Kamal Palace. Kevin is working for a PR firm whose clients are lawyers. He has aspirations to become a political advisor.

Tuesday was the knitting group, which I enjoy so much. I am learning so much from those ladies. Tuesday night I attended a writers networking meeting in LA with Tom.

Yesterday I saw Katherine for an hour-and-a-half facial. Last night I saw the Bolshoi Ballet perform "Don Quixote" at the OC Performing Arts Center. My friend Diana is cellist, and her siblings and their spouses play in orchestras, including the one that played at the ballet last night, so Diana got tickets. She and I have attended many gratis performances. It's been a long time since I've seen ballet, though I've seen a few modern dance productions in recent years. Last night was a real treat. Breathtaking.

This morning I met Jose for breakfast. He gave me a beautiful amber and silver bracelet as a belated Christmas gift. Tonight I'm meeting Terri, a man who I had completely forgotten. He says we met in November of 2007. He had wanted to call, but just recently came across my mislaid number. I am always open to strange meetings like this. We'll see.

It's been fantastic having a social life. I so enjoy this. Can't remember ever having a week like the one that's just passed. Maybe it's not an anomaly but the sign of things to come.

The Ups and Downs of Kidney Transplantation

Yesterday, when Janet said she would be a donor despite the fact that her blood does not match mine, I was so happy. Janet's willingness to be a paired donor (she gives her kidney to a stranger who also has a mismatched donor, and I receive a kidney from the stranger's donor) gave me so much hope.

Later in the evening, however, I started to think about things a bit differently. O blood type is the universal donor: O can donate to O, A, B, or AB. But O can only receive blood from another O. A can receive from A or O. B can receive from B or O. AB is the universal recipient, as it can receive from A, B, AB, or O. So, basically, if Kidney Patient X has blood type A (Janet's an A) and has an O donor (I'm an O), X would take the kidney from the O donor. In short, X doesn't need me. I need X's donor, as I'm type O, but X doesn't need me. So, I couldn't see a reason why anyone would want to be a paired donor with an O. If an A, B, AB, or O kidney patient has an O donor, why not just use him or her? A trade isn't necessary. This realization certainly sobered my mood.

It just so happened that today I had my monthly dialysis clinic visit. I asked my nephrologist if there would be any reason why an A kidney patient with an O donor would agree to a trade. He said I was right, it's unlikely, but not impossible. The matter of antigens comes into play. Kidney transplantation looks at six antigens in the blood. When donor and recipient match in all six antigens, they're a perfect match. The more matches, the better the long-term viability of the transplanted kidney. But that has changed somewhat in recent years with improved immune suppressants. Even a zero match with a living donor has good prospects. (Actually, having a living donor, rather than a deceased donor, seems to be the biggest advantage in survivability of the recipient and viability of the kidney.) So, if Janet and the type A kidney patient were a six-point match, then there may be an incentive to do a trade. Otherwise, probably not. So, I left Dr. Butman's office a bit bummed.

Later in the afternoon I spoke with Angie, the assistant transplant coordinator. I asked her if Dr. Butman and I were correct in our concerns. She said yes, then added that Kaiser Downey's first paired donor surgery had occurred today at UCLA. I asked about the pairing. She checked her files. The Kaiser patient is an O! Wow, this again gave me hope. If it can happen once, it can happen for me too.