Get to Know Me First as a Person, Not as a Dialysis Patient

I wish my friends and acquaintances would not tell their friends and acquaintances about my health. I wish they would allow me to meet their friends fresh and new, not with preconceived notions already put into their heads.

Over the last several months, I have seen this situation repeated over and over: I meet people for the first time, but they seem to know about me already. Often they ask, "How are you?" in an overly concerned way. My response is to ignore this sentiment, smile, and say, "Oh, fine. How are you doing?" Basically, treating their question as normal, polite conversation.

I wish my friends and acquaintances would allow me to make the dialysis confession to those whom I wish to know about this. I wish that instead of telling their friends in advance about "my friend Heidi, who is on dialysis," they would simply say, "Oh, my friend Heidi, who ___________________." The blank could be filled in with any of the following: is a poet; is a writer; used to teach journalism at Cal State; does massage; lives in Southern California; has a cute, little dog; is a tall, trim, good-looking blonde; is a smart cookie.

I feel that dialysis is on the level of being gay. It's the gay person's call as to whom he wishes to come out. It isn't for other people to make that determination.

I especially feel this way because, darn it, I would like a relationship some day. Telling men in advance of meeting me that I'm a dialysis patient doesn't even give them a chance to get to know me as a woman first.

But potential lovers aside, I would like everyone to get to know me as a person first. I would like to be known as fun-loving, humorous, witty, intelligent, and giving. Not just for people to think of me from the get-go as "dialysis patient."

An Ending, a Beginning

I have parted ways today with a woman with whom I have had strained relations from the get-go. We met through a mutual acquaintance a few years ago. She frequently wrote things (we communicated primarily through e-mail) that I found condescending, and I frequently wrote things that insulted her. She probably didn't mean to be condescending, and I really tried not to offend her. It's as if we spoke different languages and so didn't understand each other.

In a conversation today with my new friend and nextdoor neighbor, I realized that there is balance in the universe: one friendship ending, and a new friendship deepening. First, some background: my neighbor and her husband are Tibetan Buddhists and provide housing for a monk-friend when he is in town. We have similar political views and intellectual interests. They have a beautiful craftsman-style house and an even more beautiful backyard, a virtual paradise, complete with a fish pond. She is a reading specialist who works with ESL students, and he works with hospice patients. They have a German shephard and a parrot, so we go for walks together with Rasputin.

The first bonding experience with my neighbor was July 1, when I had the first of three paramedic visits this summer. As the paramedics carried me out, she took control of Rasputin and took care of him while I went to the ER and then to another hospital. This was a pretty dramatic scene, with my neighbor walking briskly beside the stretcher and me crying, asking her to take care of my little dog.

My new friend is one of the sweetest, kindest people I have ever met. Her husband is a very good guy too--the first man Rasputin warmed up to.

This afternoon, while taking a walk with our dogs and me, my friend announced that she would like to give me one of her kidneys. I was really touched by this. She had called her doctor to see what her blood type is, but there were no records of this. I told her that she should go to the United Network for Organ Sharing (UNOS) site and that I would give her some brochures. But most importantly, she should find out her blood type because if she's not O+, then it's a no-go.

To date, four people have offered their kidneys: Helene, my good friend in Nova Scotia; Tim Howard, a former colleague at Cal State who has become a dear friend and now lives in Sacramento; Roger Ball, my friend through letters of 20 years who lives in the California desert; and now my dear neighbor. Helene and Tim are not compatible blood types, and Roger's health is poor, plus he's a smoker.

Every time someone has offered, I've been really touched. That's so beautiful. Even the offer is amazing. All four of these offers have given me hope--hope in the transplant process and hope in humanity.

But of course I must first get on the wait list. Even if I had a compatible donor ready to go, I still would have to be approved by the transplant team. And before that can happen, I have to have the heart surgery on Oct. 30.

But back to my neighbor: I am so grateful for her friendship, the only friendship I've ever had that is renewed on almost a daily basis, if only to say hello in passing. I really like that. It sure beats seeing friends only once or twice a year, that's for sure.

The Beauty of Small Talk

I really enjoy small talk. This may seem contradictory to what I wrote yesterday about wanting depth and intensity in my loves and my friendships, but it isn't. You see, though I'd very much appreciate having a lifelong partner or a lifelong friend whom I would see and interact with on a daily basis, I derive a great deal of satisfaction from brief, pleasant, cursory exchanges with strangers or acquaintances. Especially since the words exchanged are by and large positive, often compliments of one sort or another.

I have a bunch of these encounters every day, and they bring me joy. Chatting for 30 seconds or maybe a minute with other dog owners during my four-times-a-day walks with Rasputin. A few words with store clerks or with neighbors. Going up to a woman who is exotically or beautifully attired and telling her she looks fabulous, as I did a few days ago to a young, tall, thin, grocery-shopping gal with a short black dress and a coon's skin hat. Or longer exchanges, like the visit I just had with Teri and Carolyn at the journalism department office. They are such sunny gals, and I always enjoyed talking with them when I worked at Cal State.

These light and easy conversations bring out the best in people. They are not loaded down with heavy emotions or drama; they are like water flowing in a gentle stream--no obstructions, no frenetic energy, no expectations, no clinging to the person after he or she has gone.

As I move about the world, I will work at being even more present during these moments, keeping the intention that these positive meetings reinforce the spiritual grid that holds humanity together. A few pleasantries with a neighbor, clerk, shopkeeper, waiter, dog owner, or salesperson have a ripple effect. We both depart with a little glow, a fondness and a hopefulness, and we each bring a spark of that to all the other encounters we have that day. In this way, small talk is like Bondo, strengthening the grid, increasing the world's love vibration.

In particular, I must be attentive to my interactions with service personnel. So often--perhaps 90 percent of the time, maybe more--they are not paying attention and so make mistakes or ask questions I have already answered. Instead of calling them out on their mistakes and their faulty information, I need to increase my love vibration. Most of the time I know what to do anyways, and I don't need their help. So if they give the wrong information, that's OK, because I'm not counting on them for advice anyway.

This is particularly true of the nurses at the peritoneal dialysis clinic. They frequently give erroneous or contradictory advice, and I'm always making a big deal about their mistakes, which of course causes more problems. I just have to let it go. If their false info causes other patients harm, then it is up to those patients to do something about it. My trying to improve things hasn't improved anything, so I just have to let it go. The frustration and anger I've displayed regarding these matters have not done me any good. I have to keep things light and easy with the staff, and if I really can't figure something out on my own, I can ask the doctor.

Another positive way to approach small talk is to consider it a wonderful gift. When one's family and friends are not around, God sends strangers to us to make light, happy conversation. The trick is to realize these gifts every time and every day. To appreciate the light and love of humanity that shines through these transitory meetings.

Do People Laugh at Cancer?

A few days ago, I mentioned to someone that I would sure like to do X, that X had been my plan, but that now X wasn't possible. She asked why. "Dialysis," I replied. She responded with a laugh, that inappropriate laugh that some people often use in such situations.

Her response made me wonder: Do people laugh at cancer too? Not in a general sense, but to the cancer patient's face. The next day I received an answer.

(I wondered about cancer because healthy people consider cancer the ultimate in health challenges. I'm not sure there is any one worse condition, but I have often wondered if cancer deserves this spot. After all, with cancer you either go through an awful time and then you're fine or you go through an awful time and then you die anyway. But you don't generally have to deal with cancer for decades or all of your life, though I'm sure there are exceptions to this. But any way, cancer seems to be at the top of the heap of physical challenges in most people's estimation, so I wondered about cancer and inappropriate laughter.)

I was attending a tai chi class that is taught by a cancer survivor. I asked him about his T-shirt, which advertised a river-rafting company in Idaho. I asked if his wife had gone with him. He said no, that the trip was only for cancer survivors. Another person in the class made a comment and laughed. That inappropriate laugh.

I then noticed the instructor's reaction. It was clear to me, even if no one else noticed, that he was disturbed, perhaps perturbed, by her laughter. I was seeing on his face the same reaction that must cross my face, and I didn't like it.

So, this is something I'm working on: Not allowing inappropriate laughter or insensitive comments to ruffle my feathers. In fact, perhaps the best way to help this process along is to smile and brighten my eyes when this occurs. Not that the other person has to see the smile, but more of a smile as one does during meditation or while taking a walk alone in the woods. A light smile that in and of itself lightens the mood and keeps me focused on my true nature. Rather than feel hurt because the other person is slighting my problems, turn it around and smile as if these problems are illusory.

As Tuyen Tran, the Vietnamese friend who long ago introduced me to zen, said, "Which is bigger: You or your problem?" I have been responding to these insensitivies as if my problem is bigger. Regardless of how the other person would answer that question, I need to start answering it with "I am!"

The Appropriate Role of People in One's Life

Rasputin is a great teacher. He has reinforced lessons I thought I had learned long ago, but were in need of relearning. For example, he loved Canada, absolutely loved walking without a leash and romping in the woods. But he is equally happy here in the city, sleeping the day away, playing with his toys, and going for walks on a leash. The lesson: Be happy wherever you are and whatever you're doing.

Rasputin is also helping me put people in perspective. I confess I am and have always been a romantic, with fantasies not just of being swept off my feet by a wonderful guy but also of adventures with a lifelong friend, a woman with whom I would share my feelings and she, hers; a comrade who would travel with me and be like the sister I never had. In other words, I have always wanted from friends and lovers an intimacy that either very, very few people are capable of or the people I have known are not willing to or able to provide. This has so often been a huge disappointment for me. But this has been my problem, not the fault of others. It has been my mistake for expecting from others what they are unable or unwilling to give.

Since adopting Rasputin, my expectations of people have greatly diminished. If people are insensitive, I have Rasputin's unconditional love and acceptance to go home to. If friends don't have time to get together, Rasputin is always ready for a walk or a belly rub. If there is no person to talk with, Rasputin is the best listener I've ever known, looking at me with 100 percent of his attention focused on my every gesture and word.

Rasputin is helping me put people in perspective. They are busy with other things and with other people. If they don't have time or energy for me, that's OK. It truly is.

As my friend Araia, the nature spirit who dwells in the woods of northeastern Washington, told me many times, "Heidi, if you get a dog, you'll forget about a man." She's absolutely right. I had been thinking a great deal about one particular man, fantasizing about him and being frustrated by not having him. Now I hardly think of him at all, and when I do, there is no urgency to it, no desperation.

And I must admit that my relationship with Rasputin is far better than any I've ever had with a man. He's more loving, affectionate, trusting, and playful than any man I've ever known. He's got a great sense of humor. He's filled with joy. He never complains or criticizes. He doesn't offer advice. And he doesn't psychoanalyze me. And he does not have breasts and he is not "pregnant," like most men. He's trim and good-looking.

So, thank you, Rasputin, for helping me to see people as they are meant to be seen. They can be wonderful in small doses, provided I have no expectations for them and do not think about them when they're not around.

Learning to Accept the Insensitivities of Others

Inappropriate laughter. Insensitive comments. These are the sort of things one might expect from strangers or from one's enemies. But most often, at least in my experience, they are put forth by friends.

A sensitive subject will arise, and the friend will laugh as if it is such a trifle or will say something that is dismissive or something that makes me realize that we are living on different planets.

In one recent case, I was at a barbeque. The hostess's stepmother said that it is easy to do nothing all day. The hostess turned to me and said, "That's what you're doing, Heidi."

This made me wonder: Do healthy people really believe that having a chronic illness means you are doing nothing? If so, I would be very happy if they would like to trade places and do all my "nothing" and I take up their "something."

I estimate that when I add together all the hours each day I spend in medical tasks--10 1/2 hours of dialysis each day and another 45 minutes of set-up and clean-up; checking and recording blood sugar levels and blood pressure; driving to and participating in doctors' appts., lab tests, and diagnostic exams; massaging my feet, hands, ears, and eyes to increase blood circulation and prevent amputation and blindness; going to acupuncture appts.; hospital stays and paramedic dramas; ordering, getting, and organizing meds; emailing and phoning doctors and nurses; clinic visits; online research on kidney disease; attending kidney conferences and support groups--I must average at least 15 hours a day in just attending to my body. So add to all this "nothing," I still work as a writer, editor, and massage therapist; do my housework, cooking, and cleaning; pay my bills; and care for my mother's finances, errands, and medical care. Oh, yes, and Rasputin! A whole bunch of nothing, for sure.

Yesterday I spoke of this to Aaron and told him that I have to learn how to keep these people's insensitivies from affecting my health and well-being. Perhaps the best way to deal with insensitivities is to pretend that the comments were issued by children rather than by adults. For example, if a young child came up to me, pointed to my stomach, and said, "Why do you have tubes coming out of your tummy? Are you a robot?" I would laugh. The child is ignorant and doesn't know that this is inappropriate. That is how I need to start treating adults who say insensitive things or laugh at things that are difficult for me. Just think of them as children who don't know any better. Even Jesus took this approach. When he was on the cross, he said, "Forgive them, Father, for they know not what they do."

Of course, as Aaron pointed out, this does not make for very deep relationships if you can't talk about how you're feeling and if you always have to fill the archetype of the happy sick person. That's true. But that's why I've got Rasputin! That little joy bucket is pure unconditional love. I am so very blessed having him in my life. The desire for deep, meaningful human interaction has significantly diminished since he's been with me. Of course, I am open to true love or a deep friendship, but they're not something I think much about now. Thank you, thank you, thank you, forces of the universe, for sending Rasputin to me.

Hooray! At Last, Some Movement in the Transplant Process

After being dead in the water for at least five months, I have finally seen some movement in the transplant process. I met today with Dr. Michael Lee, the new cardiologist at UCLA. He has replaced Dr. Van Herle, who is the cardiologist who was initially assigned to my case but who has left UCLA.

After an intro that made me think he was going to say "no way" to a transplant, no matter what I did, Dr. Lee said that, if I do the following, he will recommend to the transplant team that I be put on the wait list:
1) get a stent in the artery on my lateral side,
2) have an ultrasound and a fractional flow reserve test done of my right artery and perhaps get a stent put in there or have bypass surgery for that artery, and
3) get him the results of my most recent stress test.

A month ago I was averse to having another stent because 1) the first stent, placed in November 2006, did nothing to improve my condition, and most importantly, 2) the dye used for an angiogram and for stent surgery is damaging to the kidneys. Now I just want to get on that list. I am hoping and praying that my kidneys will be protected during these procedures, as I want to stay with peritoneal dialysis and not have to switch to hemodialyis.

So, here's the game plan now:
1) Schedule stent surgery.
2) Perhaps go back for the assessments of the right artery if Dr. Phan, my Kaiser cardiologist, feels that it would be better for my kidneys if the procedures were done on two separate days.
3) Depending on the results of the right-artery tests, a) do nothing because the right artery is just fine, b) get a stent, or c) have bypass surgery.
4) See Dr. Lee again and get his OK for the wait list.
5) Perhaps see the transplant surgeon again.
6) Wait for the transplant team's approval and for the letter of approval that puts me on the wait list.
7) Work with a live donor--the best scenario. Or wait for a deceased donor.

At my next meeting with Dr. Lee, I plan to ask him if he could recommend me for the kidney-pancreas wait list. That would be great because 1) my wait time for a deceased donor would drop from 7-10 years for a kidney-only transplant to 2-3 years for a kidney-pancreas transplant. This is because more people need just the kidney than need both organs, so when a compatible donor comes along, the patient who could use both organs is given the organs rather than wasting the pancreas and only using the kidney. 2) I would no longer have to wear an insulin pump or take insulin injections--the answer to my decades-old prayer!

A Successful First Trip

Hooray! I made it to Nova Scotia and back without a visit from paramedics or a hospital stay! My blood pressure was dangerously high for about a week, but I finally went to an acupuncturist in a town about an hour from my cabin, and he brought it under control.





I am very thankful that all went without major incident, especially as I was in the hospital three times in the month and a half just prior to my trip.

A Government Racket

Even though I just turned 51, I had to sign up for Medicare as of June 1 (when still only 50) because I'm on dialysis. So now I'm part of the Senior Advantage program with Kaiser Permanente.

An amazing way the government is making money is through Medicare. Yes, contrary to all that you have heard about Medicare being in dire straits, at least in its collections process, it is raking in the cash and in many cases not providing services for the payments received. Let me explain: I just received my Medicare bill for $289.20, due Sept. 23, for October-through-December coverage. So if I should die on Sept. 24, the government keeps that money, even though I am not alive to accept any services. And it clearly states on the back of the bill that I am responsible for paying the bill even if I have been taken off the Medicare rolls, as happens, for example, three years after a kidney transplant, the government assuming that a kidney patient, having been out of the workforce for years, perhaps a decade or more, can jump back in, in her 50s or 60s and get a great-paying job with health benefits that will cover the huge cost of immunosuppressant drugs. What fairytale land are they living in, huh?

So Medicare is operating in a way that would not be allowed in the private sector. Can you image, for example, having to pay your rent three months in advance and your heirs not receive a refund if you should die and they move all your stuff out of the apartment immediately? Or that you would be responsible for your rent if you were no longer living there? It just wouldn't happen, but the government can get away with this. Imagine the money they are taking in for people who die or are removed from the rolls and have already paid their premiums!

Another scam is Social Security in which payments are always one month behind because, as a rep told me, I am paid Dec. 1 for November because SS doesn't want to pay me for November on Nov. 1 as I could die some time during the month.

More Cabin Pictures

Friend Heather had asked to see photos of the cabin, so here goes. Please note that I did NOT paint the exterior that amazing green. The former owner, Norm, got it in his head to do so just prior to putting the place up for sale. I guess he thought it would be a selling point!






And here are a few of the shed that is also on the property. It's full of just about everything you'd need to build another cabin, if you had a mind to: flooring, shingles, windows, lumber, lots of nails, curtain rods, molding, a toilet, chairs, a table, and a bath tub.

Work on the Cabin

Though I have had a lot of time to explore and read and generally goof around during my stay in Nova Scotia, I still accomplished some work on the cabin--something that makes me feel really good.

One project that I have wanted to do for five years now is decorate one of the walls in the porch with items I brought with me from California or collected along my way to Nova Scotia during my grand solo camping-back roads adventure of the summer of 2005. Though the task is not completed, and will not be completed this time, it is started for God's sake! Last Monday Aaron painted the wall blue, or as the color is appropriately named "giggles." The next day, Aaron, Helene, and I plastered pebbles, earrings, statues, chipped pottery, shells, state pins, and so many other treasures onto the wall. A lot of it fell off, being too bulky or not flat enough. A few days ago, I added a few more items, including green, yellow, and purple pull rings from my dialysis bags and the plastic ends of the dialysis tubing. One thing did not go according to plan: Though the paint lady added the right amount of color to both the primer paint and the plaster, on the wall, the two are not quite a match, perhaps because the plaster on its own is not a true white. So, next time I will carefully edge each item on the wall with the primer. A big job. But as it is now, I am so happy that I have finally put these items up. As I said to Aaron, now for sure we aren't selling this cabin. Who else would appreciate this!





Embedded in the wall are items that friends gave me in 2005 to include in this grand art project: a moon-and-stars tile from Jamie, bottles of green abundance powder and red love powder from Georgette, and a half-dollar-sized basket woven by Robin.

The other big project was windows for the porch. Back in the summer of 2005, I drywalled the porch, but planned to put in windows the next year. That never happened. Finally, I've got windows, put in by Wayne, a carpenter who works for my general contractor-neighbor Merwin. Wayne used three windows that were in my shed. So happy with my new windows!



Other projects accomplished:
* While Wayne was working, he let me borrow his ladder. I used this to clean out the gutters, which were filled with old leaves and dirt, even little trees.
* Wayne also let me use his power saw to down some trees that were growing too close to the cabin. I thought this was a good deal of fun.
* I replaced a hasp on the front door. Later Wayne redid this, saying that I should have mounted it the other way so that the screws are hidden under the arm when it's locked. Otherwise, someone could just come by with a screwdriver and get into the cabin. I said, "But someone could use a crowbar if they really wanted in." But that was awfully nice of Wayne to redo it because it had taken me about an hour to do it with my manual screwdriver.
* Though Helene had put two coats of paint on the floors of the bedroom and the porch, I had to touch up both because of my cleaning solutions for dialysis hygiene and Wayne's carpentry, respectively.
* I took a broom to the inside of the shed and recycled a bunch of empty plastic containers.

So, I'm happy with the work I accomplished. Next year I'll finish the porch wall, and I'm sure they'll be many more tasks to check off.

Rasputin's Going to Miss This Place

Since his arrival in Nova Scotia almost three weeks ago, Rasputin has become more and more adventuresome. At first he was underfoot when we went for walks in the woods, and I often accidentally stepped on or kicked him. Then he began poking his head into the ferns and grasses at the side of the dirt road near my cabin. And then about a week ago, he took the plunge and went into the wild woods. Many times he has raced off, and I have not known where he is for up to 10 minutes. This is a bit disconcerting, as bears and packs of coyotes abound in this area, and little Rasputin would be an easy meal.

His hunting skills, however, leave much to be desired. His basic strategy is to attempt to scare his victim to death, lunging at a toad or a bug and then jumping back when they move. The only prey he has secured have been several live flies (he makes the most puzzled face as he downs them) and a dessicated gopher, or perhaps a squirrel, shown here.



He does a happy dance whenever I get ready to go outside. He absolutely loves the freedom of being leash-less. He's really going to miss his woodsy adventures when we get back to Long Beach and his outside excursions will be on pavement and concrete--with a leash.

Though the first two weeks of my visit were full of events with people--first with Helene and her friends and last week with Aaron--this week it's been Rasputin and me all the way. Aaron left last Wednesday, and Helene has been at a family reunion in Montreal. I really enjoyed seeing and doing things with other humans, but this week alone with Rasputin has been wonderful too. We've taken a lot of long walks, explored a few of the provinicial parks, and returned to Hampton Beach, where Helene and I had gathered surf-tumbled pebbles during my first week.

I will be leaving my cabin very early Wednesday morning to catch a 9:30 a.m. flight from Halifax, a two-hour drive away. I will miss these woods and the stream, lake, and river near my cabin. So many times during these walks, my mind has been completely clear, devoid of any thoughts, at peace.

I could very easily live for many months like this, taking walks with Rasputin, exploring Nova Scotia's natural beauty, making light conversation with people when I see them, and having a social engagement now and again. This had been my plan only a year ago. I had planned on leaving Cal State, driving to Nova Scotia, living here for six months of the year, and spending the other six camping and traveling throughout the U.S. I would live on writing and editing jobs, with no rent to pay. Well, this had been the plan, but dialysis has changed all that.