Medical Emergency at 7,200 Feet

This past weekend was the 12th annual chick cabin getaway weekend. I arrived at about 11 a.m. on Saturday and was immediately in trouble.

Green Valley Lake, located in the San Bernardino Mountains west of LA, is at 7,200 feet. No one had cautioned me about high elevations, and it didn't cross my mind that attending chick cabin only six months after triple-bypass surgery might pose a problem. Well, it did. Immediately upon my arrival, I was struck by severe chest pain and constriction. I laid down, but that didn't help because lying prone put even more strain on my heart.



When Susie arrived about 20 minutes later, I told her I'd have to drive down the mountain. She didn't think I should do that on my own and took me to the GVL fire station, where I received oxygen.

I knew my blood sugar was high and suspected that my insulin pump's infusion site was not delivering insulin to my body, but I was in no shape to change my site. Unfortunately, I did not receive an insulin injection until five or more hours later in the ER at St. Bernadine's in San Bernardino. By that time, my blood sugar was over 500.

The GVL station was not equipped to handle me, so an ambulance took me down the mountain. Some of the chick cabin gals followed in my my truck and in Susie's vehicle. Laurianna, a firefighter in New Mexico, helped by getting a list of my meds. The paramedics were such nice guys. Aren't they always! Scott tried to get an IV in my left arm while we were twisting down a winding mountain road and failed. He then asked me if I'd ever had an IV in my neck, and I told him that for sure we're pulling over if he's thinking of doing that!

Next came three sublingual doses of nitrogylcerin and an infusion of morphine. That got the chest pain under control for a while. By the time we got to the ER, I was feeling much better, so my friends left without me asking them to get my blood monitor and insulin supplies from my truck. I could have kicked myself for that, since my blood sugar was not regulated until noon the next day. If I had been able to get my insulin pump working, I would have been in much better shape much sooner and would have prevented much of the chest pain.



I was transferred to Kaiser Fontana on Saturday evening and stayed there until Monday evening, when Aaron and Rasputin picked me up. (Heather had driven my truck back to Long Beach as I hadn't known if I would be transferred to Downey, and I didn't want to have to worry about the truck.)

Heather called and left a message on Saturday night. Unfortunately, I was talking with a doctor and didn't take the call. Heather said that the only phone that worked at the cabin was Susie's, so I called Susie back. Unfortunately, I called her home number, not her cell. I must have left a dozen messges on Susie's home phone--all messages that she didn't retrieve until she got back to LA! I also left a bunch of messages on Heather's cell, just in case she got to a place in the mountains where she could retrieve them. I was alone and lonely, and I really wanted the support of the chick cabin girls.

Early Sunday afternoon, a doctor told me that my triponin level had continued to increase and was now in the borderline region between questionable and probable heart attack. This set me over the edge. I simply could not face the possibility of being on dialysis for the rest of my life because of a cardiac event.

The docs wanted to either perform a nuclear-medicine stress test or an angiogram to see if there had been any new damage to the heart. I was against the former as it would require a blood transfusion, which means the possibility of antibody formation, which would complicate or preclude a kidney transplant. I was anemic, with my hemoglobin at 9.6. In order to safely perform the stress test, I'd have to be at least a 10.

The angiogram is far more invasive and carries the risks of heart attack, stroke, or death. Besides, the dye can damage the kidneys.

After much hand-wringing, crying, and consulting with doctors, I opted to leave the hospital, up my procrit injections to stimulate blood-cell formation, test my hemoglobin in a week or so to see if it is 10or more, and if so, take the stress test. Getting all this done before leaving for France on June 1 is another matter.

My belief--and I'm holding to this--is that this was a perfect storm of high altitude, high blood sugar, and anemia, any of which taken alone can cause chest pain and constriction. I am holding to the belief that this was not a heart attack or anything else that might jeopardize my placement on the list. I will get on the list, stay on the list, and receive a successful kidney transplant.

How Much is My Life Worth?

My friend Daphne sent me a link to a CNN story about California's new living-donor registry and New York's interest in an opt-out organ-donation program. Instead of people having to explicitly state that they wish to donate their organs upon their death, the state would assume that you do unless you opt out.

The comments on this story were fierce--on both sides. It's amazing to me how many people are concerned about what happens to their bodies after they're dead. As one sarcastic commenter wrote, if you need to be buried with your organs, maybe you should also be buried with all your wives and your slaves. That was pretty funny, but some of the comments weren't. One that especially disturbed me was someone who wrote that transplants should not be performed because they're too expensive. The father of a young boy who had been on dialysis for eight years before receiving a kidney transplant shot back that dialysis is far more expensive than a transplant. The first commenter didn't respond, but I can imagine him saying, "Well, then dialysis is also too expensive, so we shouldn't allow that either."

This made me wonder: How many people would vote to turn off my dialysis machine? How many people would prefer that I was dead? Am I wasting taxpayer money (since all dialysis patients are on Medicare)? Is my life worth the money that is being spent on keeping me alive? Do healthy people think of sick people as useless or as too expensive to keep going or as better off dead? What would I have to do in order to make myself valuable enough to be considered worth saving?

I don't have answers for these questions, but the pondering of them made me very sad. This general dismissiveness of the world was coupled with dismissive comments earlier in the day from someone who let me know I had disrupted his day by calling him. Perhaps part of the inconvenience or discomfort he felt was due to me being a dialysis patient or a diabetic or a heart patient or someone with a broken hip. One of those people who, in the opinion of some or many in our society, is wasting money that could be better spent elsewhere. Perhaps on buying more killer drones for use on Pakistani civilians or giving more money to Wall Street bankers or building even more prisons. Yes, there are so many ways to facilitate death.

Officers' Club in Ruins

Aaron had to work until 4 on Mother's Day at Parkers Lighthouse, where he now waits two or three days a week, so Rasputin and I checked out the Great Park in Irvine.



You are really setting yourself up for criticism when you name something "great," and the Great Park in Irvine is no exception. I had not heard much about it, except my friend Bev's disparaging words. I wanted to see for myself.



A Turkish festival was being held Mother's Day weekend at the Great Park, and initially I had thought of attending. But upon walking up to the venue and seeing that it was primarily a carnival and that I'd have to pay $12 for admission beyond the $5 I had already paid for parking, I thought better of it. Instead, Rasputin and I explored the ruins of El Toro Marine Corps Air Station, the approximately 4,700 acres on which the Great Park is situated. Officially closed in 1999, the base had initially been considered for a new airport or a housing development. After much back-room wrangling, a park was born.



One thing I had heard of the Great Park were the free balloon rides. Though it didn't seem as if anything was going on in that department, Rasputin and I walked over just to make sure. The balloon was tethered to the ground, and no one was waiting in line for a ride. Would like to try that some time, but Mother's Day was not the time.



I had heard of high hopes for the park, but what I saw was a bunch of dead and dying grass and buildings in various states of decay. Some structures were fairly intact; others were nothing more than cement foundations and a few concrete steps. No playground equipment, no lakes, no hiking or bike trails, no picnic tables. Just a bunch of grass and a few parking lots.



The first and biggest building I checked out was some kind of huge warehouse. I didn't go inside, as I couldn't find an unlocked access. That would have been quite surreal walk about in a warehouse the size of several football fields.



Near the park's entrance was the former officers' club. Though the main entrance was chained and locked, a side door was not only unlocked but open. Rasputin and I entered. Though most of the walls had been stripped down to the framing and the carpet had been removed, I was amazed to see that so many chairs remained, that the glass ceiling had not been damaged, and that a few framed pictures still hung on the walls. Especially since I did not see any NO TRESPASSING signs or warnings that it was a federal crime to destroy former military property. Also, I saw absolutely zero security personnel, unless you include the young guys at the gate directing traffic.



I love to explore ruins, and this was a bunch of fun for me. I especially enjoyed standing in the relatively intact bar and thinking that a little over a decade ago, this had been a hopping spot. This was so much more fun than a crowded festival or an overpriced, hurried Mother's Day brunch.

Dialysis Invades my Dreams

Last night for the first time that I can recall, dialysis entered my dreams. I had two dreams in which I had to explain to a humanitarian aid coordinator why I had not reported to a remote third-world site to help with relief efforts. I explained that I was a dialysis patient and that travel to such an area under conditions without electricity for my machine and a source of clean water was dangerous for me.

Over the decades, diabetes has often figured in my dreams. I am offered a piece of candy, say, and immediately the thought comes to me that if I eat it, my blood sugar level will rise. Or perhaps I eat the candy in my dream, but all the while I'm fretting that I will pay for this in high blood sugar. Whenever I'd awake and recall these dreams, I'd realize how deeply embedded in my consciousness this disease is. Even in sleep, there is no escaping it.

Then I had a dream about 11 years ago in which I slowly and almost sexually consumed a fine chocolate. The experience was luxurious, extravagant, and completely devoid of any pangs of guilt or worries about blood sugar. Simply the delicious pleasure of delighting in the texture and flavor of this morsel. I took this dream as a sign that I would soon be healed, that my inner self no longer knew me as a diabetic and that very soon my physical form would respond in kind.

That did not happen, of course, though I believed it with all my heart and soul.

Thanks to All the Childless Women

On this Mother's Day, I would like to say a big thank you to all the women who have not had children. If you had, the world would be much more crowded and a much uglier place.

For the record, I love being a mom and I love my son. I am very happy I am a mom. And I'm sure a lot of moms out there are happy they're moms too. But that's not the point of this post.

I know it is hard for you sometimes when people ask if you have children or when they wish you a happy Mother's Day, not knowing your situation. I'm sorry too for all the people who have asked you over the years when you're going to have children or why you didn't have children--as if it's any of their business. And I know that this holiday for some of you or sometimes for all of you is as much of a downer as Valentine's Day has so often been for me.

If I were the dictator of the world, I would perhaps allow everyone to have replacement children--that is, two for every couple. Anything beyond that would result in penalties or huge tax disencentives. In fact, I would give women who choose not to have children a tax break for every year they are childless.

If you look at my ex-husband, his new wife, the love of my life, and me, Aaron is the only progeny. So we're at only 25 percent replacement rate.

If there were far fewer people on this planet, so many problems would disappear or be greatly diminished. Pollution, consumption of resources, unemployment, racial and ethnic tension, overcrowding, poverty, illiteracy, starvation and malnutrition, erosion, deforestation, street crime, subjugation of women, child labor, drug and alcohol abuse, spousal and child abuse, and war all stem, at least in part, from too many people sharing too small a space.

So thank you to all the women who have not contributed to these problems by adding more mouths to feed.

What a Shirtless Man Can Do to Me

Yesterday morning before I left for work at the spa, I rang my neighbors' door to see if they would care to have Rasputin for the day, since Aaron was also working Saturday. It was a little before 9, and the husband answered the door shirtless, in sweat pants, and with rumpled hair. He's good-looking, good guy who is trim, intelligent, and has a sense of humor. After he said yes and we exchanged some pleasantries, I went off to work with a tear in my eye.

It's not my neighbor per se. Sure, he's a great guy, but it's more the overwhelming sadness that I felt seeing him standing there, knowing it's been more than 10 years since I loved a man who really seemed to love me, that it's been that long since I woke up to a man's bare chest. And even more than that, I thought that I'll never have that again in my life. That's really hard to take. That because of my diabetes or my kidney disease or the dialysis or the heart surgery, I'll keep being rejected or not even considered. And of course, once I have the transplant, I'll have so many scars on my body that I'll look like a hacked piece of meat.

As I was doing my first massage of the day, I thought, Once I get the kidney transplant, I'll be free of the dialysis tubing. Then I can get a bunch of tatooes, maybe intersecting vines that connect and cover the bypass scar down my chest, the scar from the vein they took from my right thigh, and the huge gash that comes along with a kidney transplant (for the recipient, not the donor). That made me feel much better. I thought there still might be a chance at love in this lifetime.

Later that day, however, I remembered: With a compromised immune system from taking the immune-suppressant drugs that prevent organ rejection, I will not be able to have tatooes. The possibility of infection from the needles is too great.

So I guess there will always be a reason for a man to reject me. The best I can do is do a much better job of avoiding the countless prompts that might remind me of my aloneness--love songs, couples holding hands or kissing, people talking about nice things their significant other does, groups in which I'm the only single person, any references to or images of sex, and, of course, bare-chested men.

Life Sharers

Half the people who receive organs in this country are not organ donors themselves. LifeSharers is a nonprofit organization that contends that just is not right. If you are asking for an organ, shouldn't you be willing to donate your organs upon your own death? It only seems fair.

Now you might say, "Who would want the organs of a person who is in such bad shape that she needs organs?" Well, my heart, pancreas, and kidneys may not be quite up to snuff, but my liver and lungs are fine. Also, my eyes could give sight to the blind, and my bone marrow, tendons, and sinews could be used to help so many others. So don't ever think you're too old or too sick to be an organ donor. You never know whose life you might save or whose living conditions you might greatly improve. Anyone can become an organ donor.

LifeSharers is an organ registry for organ donors. Members agree to donate their organs to other LifeSharer members (family members take precedence over LS members). This is a much more equitable system, plus for people like me who are awaiting an organ, it greatly enhances my chances of getting an organ before my time is up.

At present, there are nearly 1,400 members and only 84 members who are in need of an organ.

If you care about me and if you care about making the organ procurement system more equitable, please become a LifeSharer member at lifesharers.org.

Forty Years Ago Today

Today is the 40th anniversary of the Kent State massacre in which four unarmed students were shot and killed by Ohio National Guardsmen and another nine were wounded. The students were protesting Nixon's illegal and immoral bombing of Cambodia and had set fire to an ROTC building. The students were told to disperse and were inundated with tear gas. Then the soldiers opened fire. As a witness says 40years later, it's still an unsolved murder.

I remember being at Kent State only a short time after the shootings. My mother, oblivious to the hundred thousand activists who were heading to Washington, D.C., for protest marches, decided to go ahead with a trip to the capital that she had planned for my brother's and my spring break. As we drove from Wisconsin to Washington, we encountered young people and hippies at every truck stop. When we got to the capital, it had been virtually shut down, as the activists had taken over the entire Mall.

We did not get to visit the Washington Memorial or many of the sites around D.C., but my brother and I received a valuable lesson in history, as we saw so many people spontaneously petitioning their government to end the violence overseas, as this violence had so dramatically spilled over into violence against our own people here at home.

On the way back to Wisconsin, my mother detoured to Kent State. It was a chilling experience to be on the campus where students had died just a few days before.

Despite the public outrage regarding Kent State, the violence did not end there. Just 10 days later, at Jackson State University in Jackson, Miss., another two unarmed student protesters were murdered, this time by local law enforcement.

Let us never forget Kent State. In 1989, when Chinese troops opened fire on protesting students in Beijing's Tianamen Square, Americans were justifiably outraged and simultaneously awed by the courage of a lone student defying the tanks. But even at the time, I reminded those who would listen that our government would do the same under similar conditions and in fact it had at Kent State. Let us never forget what our government is capable of doing and very willing to do to silence protest.

My Long Afternoon at UCLA

I arrived at UCLA Medical Center a little after noon yesterday. During the course of the next four hours, I met with a nephrologist, a social worker, and a transplant coordinator. But most of the time I sat and waited, starting and finishing a guidebook on Paris for my upcoming trip.

The nephrologist said that he would approve me for the kidney wait list and propose that I get a pancreas transplant later. In effect he is saying no to the latter, since the cut-off point for pancreas transplants is 55 and I'm already 51. By the time I get a kidney and recover from that, I may be too old for the pancreas. Besides, he said, the odds of me surviving a pancreas transplant or a simultaneous kidney-pancreas transplant with my existing heart condition are sketchy. His thinking was that since I have a donor who is willing to participate in a paired donorship, I should not wait around three years or more for a deceased donor's kidney and pancreas. Rather, I should get a kidney ASAP.

The transplant team does not meet for another two weeks, but it sure seems as if it's a done deal that I'm on the list. Of course, I've thought that before and I was wrong, but this sure seems right. Plus, the transplant coordinator told me to have my donor, Janet, contact the donor coordinator to begin testing. Before this, they would not let Janet proceed with testing until I had gotten on the list. If they're asking her to proceed, my getting on the list is now a matter of formality. Hallelujah!

A beautiful turn of events has given me hope about finding a donor whose blood type matches mine. As previously said in other posts, Janet is type A, and I'm type O, the most common type of mismatched pairs. O's can give to anyone, but can only receive from other O's. So in order for me to get a living donor, I either have to have an O donor step up on my behalf or do a swap with someone who needs an A donor but has an O. The latter case might occur if the recipient had antibodies to his O donor's blood and so couldn't use the donor's kidney.

A few weeks ago, I used a gift certificate for a facial. I had asked that Tracy, a gal I once worked with at Mr. and Ms. Day Spa, do the facial, but when I arrived for the appointment, I was told that Tracy had taken ill earlier that day and that Jennifer would be seeing me. Turns out, Jennifer's dad is a dialysis patient who also has an unmatched donor. Jennifer thought her father, Robert, was an A and the donor an O, but she gave me his number and I gave him a call. Turns out, he's had a transplant before, so perhaps it's the case that he developed antibodies to his donor's blood.

If the swap with Robert doesn't work out, I have two options as I see it: 1) wait until a suitable match for a swap is found somewhere in the country; the kidneys are then extracted from the donors and rushed to the recipients, or 2) move to a state with a much shorter wait time. The transplant coordinator said that I could wait up to 18 months for the former and as little as a few months for the latter. A lot better than seven to 10 years without a donor.

One of the major problems of moving to another state is the lack of a support system. As I learned with my heart surgery, the only person who will be there for me is Aaron. And without a support system, I will be taken off the list. That was what the social worker made very clear to me yesterday. They don't want someone on the list who has no one to care for her once the transplant is performed. So moving to another state may not be an option.

I'm in Love--with Carl Sagan

Over the past few weeks, I have watched the 14-hour, seven-CD series "Cosmos: A Personal Voyage," originally aired on PBS in 1980 and still the most widely watched PBS series in the world. It is narrated by the late astronomer, astrophysicist, author, and cosmologist Carl Sagan.

I may have seen part of the series three decades ago when it first aired, but I don't remember doing so. Like many people of a certain age, and others such as my son who seem to know more about the times of my youth than I do, I always associated Carl Sagan with his dramatic, exaggerated "billions and billions" of light years and galaxies. But he was so much more than that.

After spending 13 evenings with Carl, I am sorry I never met him while he was alive because I really could have fallen for him. He had a poetic nature and a sensitive spirit that were enhanced by smoking pot. (That shouldn't have come as a surprise to anyone.) In his series about the stars he frequently worked in the folly of military spending, the ridiculousness of preparing for nuclear war, the commonality of human beings, and the simultaneous free thinking of the ancient world about the celestial bodies and yet the nonexistence of challenges to the status quo of slavery and the diminishment of women. He spoke so poetically and dare I say mystically about the universe, the thirst for knowledge, and the human spirit, yet he was also an avowed skeptic and agnostic. He quoted Walt Whitman, then easily segued to an explanation of worm holes, quasars, and alternate universes. In "Cosmos," he traveled the world, sometimes slicing an apple pie in Cambridge University's dining room or sipping coffee at a Greek cafe or walking through deserted ancient temples. Quite often he philosophized along a rocky seashore or fervently wished he could have been one of the scholars at the Library at Alexandria before its burning in 391 A.D.

A few of his many choice words that I scribbled down while watching him on my laptop:
"We are star stuff." (He said this a lot.)
"our ship of the imagination"
"Stars are the phoenixes rising from their own ashes."
"We are, in a very deep sense, tied to the cosmos."
"It makes good sense to revere the stars for we are their children." (That's fantastic!)

Yes, I could have really gone for someone like Carl. And from what I've read, I'm not the only woman who found him cute. He married three times, all remarkable women in their own right--a biologist, then an artist, and with him til the end, his "Cosmos" co-author. He fathered five children.

Something that touched me most profoundly about Carl Sagan is how he longed to make contact with intergalactic travelers. I feel very strongly that contact will happen soon, within the next few years. Carl died in 1996, 14 years ago in December. I like to think that the star stuff that was Carl has reconfigured into an adolescent human who will see the day when ETs and humans make indisputable contact. Or perhaps, as he was quite an enlightened soul during his time on earth, he has evolved to a higher level of being and will be one of the visiting aliens whom he had wanted to meet.

Thursday is the Big Day

This Thursday at 1 p.m. I meet with the transplant team at UCLA. A few times in the past, I have thought I had jumped through all the hoops and was on the list, but, no, not yet. Thursday is supposed to be the deciding day. God, let's hope so!

My understanding is that I will meet with a social worker who will assess my support system, a psychologist or psychiatrist who will determine my emotional suitability as a transplant patient, and a transplant surgeon who will give me his blessing as a viable candidate.

But of course no decision will be made Thursday. My candidacy is still up for debate. The entire transplant team will assemble at some later date and seal my fate. That could be weeks or a month or more from now. So I may not know if I'm on the list until after I get back from France in mid-June. UGH!

Once again, I can totally understand how some people just throw in the towel and give up on this whole long, dragged-out, frustrating, exhausting process. If I were less assertive, 20 years older, or not feeling as well, I certainly would not have continued. It's just too much work and too much stress.

Please, if you think of me on Thursday, send loving thoughts my way. See the transplant team viewing me with an open mind and an understanding of what is truly in my best interest.

The Four Essentials of my Ideal Residence

I have long desired four things in a residence: a designated parking spot, a backyard in which to grow vegetables, a dog, and my own washer and dryer. (Quiet, safety, and sunshiny rooms are a given.) Where I currently live offers two of these--parking and a dog. When I was married, I had the other two. For the rest of my adult life, I've either had one (a backyard) or none, so I'm getting closer.

This afternoon, after a month of rewiring and repiping and painting, a washer and dryer were installed in a small utility room at the back of the house. It is for use by all six units, but it's still a lot nicer than having to cart my dirty clothes to the laundramat. So I guess you'd say that I now have 2 1/2 of the four essentials. Yippee!

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.