"If you don't cry at least every two weeks, you are in deep spiritual trouble"

As an act of compassion and trust, we sign the organ donor portion of our driver's license and give a thought or two to the idea that someone might live or live more comfortably because of the gift of one of our own body parts. Despite our compassion, a transplanted person is still strange to us, a medical phenomena, and not quite a real human anymore. We can not imagine them living a normal life, or a normal lifespan. A mechanical replacement of hip or knee is emotionally acceptable---but the transplant of an organ tends to give us an eerie sensation.

Oftentimes before a kidney can be transplanted, a person is treated with dialysis. This is a medical intervention that attempts to mimic some of the functions of the kidneys to keep a person in renal failure alive. The kidneys do much more than create urine: they play a huge part in maintaining blood pressure, in removing sodium, phosphorous, and potassium from the system, they are essential in preventing anemia---they have a myriad of responsibilities in the whole system of a healthy person. Handfuls of pills and their side effects, dietary restrictions, shots, exhaustion, hours and hours spent hooked to a dialysis machine with tubes which emerge from one's neck, arm, or belly, nausea and vomiting, discomfort and pain, cramping, weight gain or loss, weakness, anemia, low protein, low energy, and slow healing are just a few of the fates a person on dialysis may face. Dialysis can keep a person alive for a while, but nothing can replace a kidney but another kidney.

As you can imagine, losing kidney function is an extremely undesirable event. Many people lose their kidneys to diabetes, kidney disease, autoimmune disorders, injury, or even from taking too much ibuprofen. For myself, I was feeling unwell and went to a physician's assistant who sent me to a hospital after taking some blood tests and finding a small loss of kidney function. Unfortunately, the hospital put a contrast dye into my veins in order to take a scan. Contrast dye is contraindicated in any case of kidney distress, a fact of which medical people are supposed to be aware. Knowing this simple fact, a competent system would never complete such an test; orders to do so would be stopped somewhere along the way. I did not know this, and trusted the doctors and hospitals to do what needed to be done. A test seemed merely a matter of co operation and expense. But within four days after the contrast was administered my kidneys ceased to function and never functioned again. Suddenly, after a 53 years of nearly perfect health, I found myself hospitalized, full of drugs with horrible side effects, nauseated, vomiting, dizzy and faint, anemic, weak, bloated, unable to concentrate, deeply in debt, with hoses coming out of my neck that plugged into a machine just to keep me alive.

Being dependent on a machine to stay alive is one of the conscious and unconscious horrors most people share. In fact, most people will tell you that they would "rather be dead than plugged into a machine to stay alive". But there I was, with hoses coming in and out of my neck to move my blood through a machine to 'clean' it. This inadvertently stimulated the vagus nerve in my neck several times during each dialysis session which made me feel like I had been abducted by aliens and was leaving the solar system and my body. For about six weeks I was kept alive by this process which is called 'hemodialysis'. Later, after a surgery to insert a hose in my belly, gallons of fluid were pumped in and out of me daily---a process that took up to 14 hours every day. This form of dialysis, called 'peritoneal dialysis' had to be sterile, and often graduated from discomfort to actual pain. I continued in peritoneal dialysis for about a year. There was hardly a night in which pain or machine malfunction did not wake me up at least once. I mentally added exhaustion to the my list of daily obstacles to overcome, or at least with which I had to live if I wanted to keep living at all.

Sometimes people with little or no understanding asked me if I were painting or writing masterpieces as a result of my intense medical experiences. The truth of the matter was that during this time I was lucky to be able to get to the bathroom by myself. Sometimes I was in a wheelchair, sometimes a walker, sometimes I used a cane. Sometimes I could not get up at all. I was hospitalized three or four times for various reasons directly related to my medical condition. I was also being treated with chemotherapy for the autoimmune disease which created the original kidney distress. At one point, a friend took me to a grocery store and I saw the small curb in front. "Will I be able to get up that stair?" I thought to myself despairingly. I was terribly weak from the onslaught of various treatments.

Psychically, psychologically, and emotionally I was on the threshold of disaster---of losing my will to live. I was urged by the well meaning people around me to 'adapt' to my new condition, and they did not realize the adaptation they were describing was actually a demand that I see myself primarily as a diseased person whose main focus would be to co-operate with the medical institutions and to accept my slow but inevitable evolution towards death. And of course to take enough psychotropic medications to do it cheerfully. In being thought of in this way and in being asked to think of myself in this way I was swept away in a constantly flowing river of grief. I was continually in the presence of deep sorrow which was not emotion, but a state of the soul. As the Sufis recommend, when I could find a moment of privacy, I would sit in silence with tears running down my face. The weeping was not a manifestation of self pity but an expression of my deeper self: I continued to court the muse the only way I now could: with my own tears.

This journey had taken me from my remote village in the deep forest by the ocean where I had grown, lived, loved and been loved, worked and volunteered for twenty five years. I had been away from everything that nourished me for about six months when a slight hope was offered to me in the idea of a transplant. I was willing, but I sickened a bit more each day as I waited, trapped in a huge and homogenous suburb where 99% of the population shared the same religion. The 'culture' based in a rigid belief system was at first strange, then repulsive to me. I was treated very much as an outsider because I did not share the beliefs. After twenty five years of village life, the exclusion and friendlessness was an agony in that part of the interior being that desires and in my case knows what it means to live in deep human connection.

I had been torn up by the roots, and I was not in fertile soil, not watered by cool rains, or warmed by the sun. I was holding on to the idea of a transplant and a return to my village as a whole person again, and it seemed no more solid than a reoccurring dream. I was trapped in this nightmarish suburb as the closest housing available to me close to the transplant center.

It did not help that I was in a tiny basement room with one window that looked out on a piece of galvanized metal after twenty five years of living in a cabin whose window revealed a view of untouched old growth forest, breaching whales and nesting eagles. An extra space provided to me for a 'studio' was full of dialysis and medical supplies with little physical space left for creative endeavor. It had windows that looked out at cement walls. It was a thin wall away from a television turned on every afternoon to political commentary at full volume for several hours which left no audio space for creative concentration. There was no privacy in this space as it was being used for other purposes by other people as well.

When I struggled upstairs where windows looked out into the world, I could only see the neighbors compulsively manicuring their lawns or doing things with their vehicles. I could not tell what was making me sicker: the dialysis and kidney failure or the social and emotional deprivation of the environment. I was much derided for my inability to 'be cheerful' or for 'having no gratitude'. At the same time I felt my spiritual existence and growth depended on my honesty and my tears, I was accused of self pity and verbally coerced into taking anti depressants to stop those tears. I never felt that I was listened to as a whole person---only heard if I could coherently describe a medical complaint. Complaining did not help me and I did not do much of it. I saved my complaints for when I was in severe physical pain.

The dialysis was keeping me alive but barely; I was hospitalized several times for various side effects of kidney failure or the medications I had to take. Continuing to exist with low protein levels and anemia, blood pressure on a roller coaster screaming high until my head felt like it would explode and then dropping so low I would faint, pain from the dialysis, thirst, bloating, prednisone induced hunger and anger, diarrhea and constipation, and a barrage of medical examinations and surgeries were my lot. I was allowed 42 ounces of liquid a day, which left me constantly tortured with thirst. Certainly there are worse medical conditions, and some people do better on dialysis than others, but I was not thriving. In fact, I was barely surviving, and as each day went by I had more pain and loss of energy.

In response to my soul's deep sorrow, which was mistakenly diagnosed as depression, the doctors and people around me insisted I take paxil, a cousin drug to prozac. This made me nervous, unable to fall sleep, irritable, and caused me to grind my teeth. If I said anything about these side effects, they wanted to double the dosage. My sorrow was not 'depression', but the medical world had no way to recognize a poet's sorrow, a human's grief—the result of near total loss of my being, my self sufficiency, my ability to give and help others, my freedom, my way of life, my wellness, my personal connections, the presence of the love and affection I had earned and gained from my community. It is as difficult to be in the presence of strong movement in the soul as it is to be in the presence of strong emotion. Being unable or unwilling to recognize or articulate this dimension, medication to repress it was the medical answer. I had never taken any psychotropic medications or suffered from depression in my life. I was on a long and sorrowful journey, and it was a journey unrecognized, unsupported, and unendorsed by the environment in which I found myself. It may be this journey is essentially always taken alone no matter where or with whom one finds oneself.

My life was being spent by others in what felt to my psyche like attacks and invasions. Intellectually I could recognize them as treatments; that did not lessen the aggressive and invasive aspects of what was happening to me. There were the constant warnings by doctors and nurses and dialysis technicians that I would be like this, that I would feel like this, that I would be taking these medicines "for the rest of my life". Some medical people seemed to relish telling me that so many of my current painful situations were "for the rest of my life"—situations that turned out, after the transplant, to simply disappear. I came to recognize that some of the medical people were insisting in this way because my illness was their job security. I did not feel grateful to a system that was keeping me alive after it had nearly killed me and created the situation to start with, and my lack of gratitude was looked upon as either another diagnosable symptom of depression to be treated with more psychotropic medication, or with the implication that I was a basically bad or weak personality.

I never had more than a few hours sleep because of audio interruptions—not just the dialysis machine malfunctioning, but the cell phones, regular phones, alarm clocks and watches, clothing dryers, televisions, radios, lawn mowers, cd players, doors slamming, radios, airplanes, traffic, voices, and all the other noisy trappings of life in the suburbs. It was to me, after my life in the forest, a constant barrage of shrill beeps and buzzers and abrasive voices. People who live in the suburbs may be accustomed to this unlovely cacophony, but it was as if I were being constantly and inexplicably plagued by audio snake bites. Not only did the suburbanites seem to be unbothered by the noise, they also seemed to need little or no privacy. I found it impossible to think, rest, imagine, meditate, sleep, or concentrate on a creative level even in headphones. It was even difficult to read in the noise, even when books worth reading sent by my friends were available. Privacy was non existent; after living there a few weeks any member of the household felt comfortable walking in my 12 X 12 foot room at any time without knocking or announcing their presence. It did not happen often because no one was particularly interested in me, but it seemed that when I was interrupted I was always caught half clothed changing a particularly obnoxious tube or bandage.

When discovered in tears about my soul's losses, I was sarcastically told "Oh, so you're having a pity party. Set your alarm clock for an hour or so and then snap out of it." Then the inevitable suggestion that I increase the dosage of anti depressant medication. A hostile emotional environment of this kind makes it extremely difficult to heal—it even makes it difficult for a cure to take effect.

Doctors may cure, but it is love, care, attention. sensitivity, beauty, that which is familiar, and most importantly being able to express the original self that heals. Organic food and peaceful meditation won't heal you if you aren't that type to begin with. If the way you usually express yourself is in curse words, black humor, and drinking coffee by the pot, you're better off doing just that. Being yourself as thoroughly as possible will be your healing environment. A person trying to support a sick or injured friend or family member needs to give up his or her agenda and help and encourage the person with illness to be themselves. A healing environment is the one in which you can most freely express who you are.

Too weak to even purchase clothes for the change of seasons, I wore cast offs, always too hot or too cold, and looking worse made me feel worse. No one recognized that I might really need something more than medicine, food, and the dialysis machine in order to survive. I wrote to a friend and told him I was ready to die. He wrote me right back, saying "That's fine for you—but what about me?" This worked as a tonic because he wanted me to give and that was the most important loss brought about by my weakness. If my presence could be the gift, I would hold on a bit longer.

I was waiting for a transplantable organ—either from a live donor or a cadaveric kidney. The wait for a cadaveric kidney was long—usually about five years. My niece, my friends, and a few cousins had the right blood type—but although several were willing to give me a kidney they were eliminated one after another for a variety of reasons—tissue type not matching, or high blood sugar. Probably ten people who were not the right blood type volunteered, and some said they would give a kidney if a trade could be made.

I was eleven months into dialysis, half my hair fallen out, my skin gray in color, bloated thirty pounds over my usual weight, nauseated, vomiting daily, blood pressure still on a roller coaster, and losing ground both physically and mentally every day. I wasn't seeing any way out. My kidney doctor was religious as were 99.99% of the people I was meeting and his comment was, "You can expect to be nauseated/in pain/fainting/thirsty/etc. It is not as if you had the kidneys God gave you!" The transplant team, more sophisticated but definitely on a 'chop shop' mentality, warned me about the horrors and inaffordability of transplantation and told me to be patient. I was not patient. I did not feel grateful for the treatment I was receiving where I was living or in medical life. I wanted a transplant that worked or I wanted out.

I needed to simply be honestly miserable and work my way into an abbreviated but functional form of acceptance. I woke up from one surgery and found to my horror quite a large surgical tube coming out of my belly. "This is horrible. I am a freak." I said to the doctor. He tried to convince me it was perfectly normal. There is nothing normal about having a better-keep-it sterile tube coming out of your gut with the implication it would be there 'for the rest of your life". I would be have been better off if the doctor had just agreed that it was unnatural. That which is so terrible about the truth is not nearly so terrible as trying to maintain a lie.

I was a co operative patient in that I took the medicine, endured the surgeries, took endless tests and exams, stayed in the hospital, stuck to the diets, and everything else required of me without complaint. That was not enough for the people around me: they very badly wanted me to cheerfully (and mindlessly) agree that "Everything is normal. You just don't have the kidneys God gave you!" But the truth was I felt sick every minute of every day and nothing was normal, and I found it a horrifying on many levels that the physician assumed I shared his beliefs about an alleged deity—and that I would receive comfort from his comments based therein.

My advice on that level is to go right ahead and pray for whomever to whomever—but keep in mind that most of the benefit of those prayers is that you may feel you are having a positive effect on a situation over which your prayers may actually have little or no influence at all. It might be a good idea to pray for someone who is sick, but don't expect—consciously or subconsciously—to be thanked for it if you have offered your prayers as a free gift, which usually one of the definitions of prayer. If you are looking for a thank you, or looking for that person to endorse or embrace your belief system, you are stealing the energy from the person for whom you are praying. Gratitude can not be enforced and it rarely happens that one person understands that for which another is most deeply grateful or most desperately needs. A person who does not express gratitude to you for what you think you are doing to help them may be expressing gratitude in their own way for something of which you are unaware, or for something which is beyond your understanding that is actually helping them. Or it may be that what you think you are providing comes from your own ego, and are not in any real way responding to or anticipating the sick or injured person's actual needs.

I am reminded of a situation in which I was repeatedly urged to allow elders of a particular church to lay hands on me and pray for me. It was clear that the assembled group honestly believed that my overwhelming concern was for my kidney function and that their prayers could bring about a spontaneous cure. They knew very little of me and what I was going through because they had never put their own agendas aside and listened to me or thought very deeply about my situation. So they had no idea my concern for my own survival centered in my soul, battered by drugs, a hostile environment, emotional deprivation, and invasive treatments, more than for my kidneys. When they asked me to articulate that for which they could pray 'for me' they were more than surprised when I asked them to pray that "I would not be such a bitch". The silence in the room was profound. Finally. from a few of the people who knew me some chuckles emerged. Finally, laughter. I had been me—a little too earthy and humorous for a prayer meeting—and I felt the better for it. Being myself was more valuable to my healing than any meditation, medication, prayer, or diet. Let it go on record neither my kidney function nor my attitude were in any way changed or moved by their prayers. The people praying for me felt very good about themselves and never paid much attention to me again although I was in a group with them once a week for the six months I spent there in dialysis. Having to keep such company, my lifelong aversion to rigid belief systems soon became a solid repulsion. As usual, and despite the prayers of the 'true believers', the miracle I experienced which both cured and healed me was a human one. And it was a good thing this miracle was not much longer in making her appearance.

My miracle arrived in a medium sized package named 'Sue'. She had heard I needed a kidney from an email that had landed almost accidentally in her inbox. She was calm and reassured me that we would be a perfect match although we were not related in any way. She wanted to remain anonymous. I could not imagine why she wanted to give me a kidney; why she would undergo a surgery in which someone was going slice her open, put their hand into her, grasp her kidney, and cut it out. She did not know me; she had never met me.

I was gray, tired, weepy, weak, ill, half my hair had fallen out, I was still hooked to the machine many hours a day. She calmly went through the final tests and was indeed a good match for me. Every day we came closer to the transplant it became a bit more real to me but as I had already had three people go through these tests and be eliminated for one reason or another I was reluctant to hope my situation might change now. They set a date for the transplant, and the date arrived. We went to the hospital. The people from my village were hoping for the best and sent both of us flowers, and we spent a night in the hospital. The day arrived.

First the hospital personnel took 'Sue' to surgery, and about an hour later they came and took me. I did not know if where I was going would be better or worse, but at least it would be different. And since this would be the last big attempt to return me to a more normal life—a last chance—I would be able to make some personal choices based on the results. I was wheeled away and the next thing I knew I was being put back into my hospital bed five hours later.

They woke me up for the transfer and told me my kidney was working. I was dragging a clear plastic bag and that bag was full of urine...urine my body had made with the help of 'Sue's' kidney for the first time in over a year.

I woke up the next morning and the constant sea sick-like nausea I had been living with for a year was completely gone. I was suffering the usual post major surgery effects, and the medical protocols included massive drugs to suppress my immune system and drugs like antibiotics, anti fungals, anti virals, but the transplant had worked. I was hospitalized for about a week. Sue was released one day before I was.

Unfortunately the incision split open as a result of a disorganized, screaming nurse frantically urging me drink water, and about a week later two of my vertebral disks were badly impacted by the loss of abdominal muscles, cut by the surgical incision. I had a long and painful three months of recovery not just from the transplant but also from these two complications. I spent yet more time in the hospital. I also had a wound vacuum---another machine—strapped to me 24/7 to heal the open incision. Every day I got a little better and a little stronger. Sue got well and returned to her home about a week after our surgery. I had at least one and usually three daily appointments with various agencies of the medical profession. Finally, daily blood tests became weekly, physical therapy came to an end, the incision healed leaving a particularly ugly scar. At the end of the three months I was absolutely required to stay near the transplant center, I made my reservations to return to my remote Alaskan village.

I packed my bags. I sent a few boxes ahead. I got on the plane. I went home. Once home, in the clean air, surrounded by living, growing wild things, and the love of my friends, I grew stronger every day. Except for the medicines I have to take twice a day or die, the belly full of scars, and the emotional fallout which is abating as I work with myself, you would not be able to tell that anything had ever happened to me. The medicines cost about $1400. a month and when my benefits run out in about a year, I have no idea how I will afford them. Everyone's help is needed to support a bill now before the congress to provide these unaffordable drugs to people who have received transplants. Write to your senators and congressmen and ask them to support The Comprehensive Immunosuppressive Drug Coverage for Transplant Patients, HR 3282. You can google the National Kidney Foundation for additional information. Your email could help save many lives.

For months after the transplant, I asked my donor Sue why she would do such an amazing thing especially for a complete stranger. Finally she told me a little more than she had before. She said that she was a normal, average person, with ordinary emotional capacities, ordinary physical capacities, living in a trailer next to her parents. She said there was nothing extraordinary about her, and she wanted to do something that would exceed her own personal potential. She wanted to be more than she is.

To me, there is nothing ordinary about Sue. To me, she is a spiritual giant, and the way she thinks is completely extraordinary. By looking a little more deeply into herself than most people ever even dream of, she gave me back my life. Now, I am grateful.