Sunday, August 16, 2009

Sweet Sixteen (Psst, it's just a number.), Part Three

Sixteen years and twenty-six days.

Well, here we are again. As I begin to write this, I want to say something profound; communicate some great lesson learned about having lived with a chronic illness for sixteen years. Well, to paraphrase the old saying, "That wish and a Metrocard will get me on the NYC Subway."

There's no great lesson here. Nope. Looking around my desk, I can't see any lessons at all. In fact, I can barely see my desk under all these papers.

I am so happy I lived to see the past sixteen years. It is something to celebrate, however, sixteen is just a number. I don't think its as important if my time is measured in years, days or minutes, as it is that I spend my time well, to the best of my ability. I'm here, and I want to be here for as long as I can. That and the pot of coffee I am about to make will suit me fine.

There is more to tell. Coming soon, stories about a niece and nephew; a father lovingly referred to as "Twinkle Eyes", Roller Coasters; a Grandfather, his Grandson and 36 women who pack one swift KICK.

Sunday, July 26, 2009

Sweet Sixteen, Part Two

I promised a story about "near death; real death; great gain and the pain it takes to achieve it; and a blob in my neck.  There's pop culture galore... movies; television; game shows (and the celebrities who play them).  Can you guess with whom I share a "birthday?"  Did you just blink your eyes?  That's a hint.

This essay is a memoir of my life over a period of two years. It really happened; every word is my recollection of the truth. There are references to some of my spiritual practices, with a few words and phrases in Japanese. I will translate the words and provide information about these spiritual practices in the notes following the essay.

To begin, a couple of quotes. The first is from C.S. Lewis who said, "We read to know we are not alone." The second comes from Carol Burnett, a constant source of my laughs and inspiration. Beside that, I love her to pieces. Said Carol, "Only I can change my life. No one can do it for me."

The Gift of Having Cancer
If I Knew What I Would Get Out of Having Cancer, I Wouldn’t Have Waited So Long To Have It.


In 1993, I was diagnosed HIV positive. In February 2003, I was diagnosed with Kaposi’s Sarcoma, an AIDS related form of cancer. The following month, I went through two inpatient stays at New York Presbyterian Hospital, one of the finest health care facilities in the United States. For the patient, NYPH can provide the best that Western medicine has to offer. To further benefit the cancer patient, many doctors at NYPH will consult with doctors at Memorial-Sloan Kettering Cancer Center.

During my second stay in the hospital, my health deteriorated to the point where I was told that if my condition worsened, death would be imminent. The cancer was spreading rapidly and I had lesions on my face, chest, back and groin as well as in my lungs. The platelet count in my blood had decreased to 2 (150 is considered low-normal). I had bleeding in my lungs, was bruising easily, suffered from chest pain and had trouble breathing on my own. I was on full oxygen at this point. Trying to lie down to relax or sleep put too much pressure on my chest. The pain was unbearable. As a last-ditch effort to boost my immune system, my doctors put me on a regimen of intravenous Gamma Globulin and Prednisone, a blood product and a steroid, respectively.

What follows is not an account of a near-death experience. My heart did not stop beating nor did I see “a light.” It is though, the most significant time in which I had to confront my own mortality and spirituality. I was raised Jewish, but my spiritual practice encompasses everything from Judaism to Zen and Hindu meditations and Japanese prayers. While I have embraced and enjoyed all these teachings, I would practice my spirituality only when life was going well. Then something would happen and I would toss my spirituality aside. However, when I was told that I might be dying, it wasn’t death I was frightened of. Far scarier was the thought that I could leave this world without honoring and living in my spirituality.

It was on Sunday, March 30, 2003, this “worst day,” that my life transformed in a way I could not have imagined. My entire family visited me—parents, siblings, aunts, uncles, cousins and the loves of my life, my niece and nephew. About thirty people were in my room—a real party! I came to refer to this visit as my “live wake.” We talked, laughed, cried, ate and had a lovely afternoon. Not knowing what my future held, we also said how much we loved one another and, if necessary, said our goodbyes.

After my family left, I settled in for a quiet evening watching television. The cable television station Turner Classic Movies was in the midst of its 31 Days of Oscar, a salute to American Academy Award winning films. The theme for the evening was “Oscar Gets Sick.” The two movies shown were Terms of Endearment and Philadelphia. I thought to myself, “Well isn’t this something. I want relief and now, I can watch both the cancer movie and the AIDS movie in one evening. Here I am sitting with both illnesses in one handsome, hilarious package.” The irony made me laugh. Considering my condition, it made perfect sense. Thinking that they are both great movies and I may be entertained; I decided to watch them both.

When I like a movie, I can watch it 100 times and not be bored. Being a (sometimes) singer and performer, I have always loved movies and all popular culture. A dear friend of mine considers me to be a “walking national treasure of fandom.” It’s one of my strengths. You may ask, “How strong?” Here’s a trivia question; the first one that comes to mind. Who is the first celebrity contestant to “break the bank” and win twice in one episode of the television quiz show The $10,000 Pyramid? I know this from memory and I’ll answer the question, but not until the end of the article.

During Terms of Endearment, at the scene where Debra Winger’s character dies of cancer, I found myself, surprisingly, not crying. Never before had I watched this scene without a few tissues in my hand. After a few moments I came to the conclusion that every piece of drama and negative energy I could associate with my own condition was up there on the television screen. It was not a part of me. I could turn it off whenever I wanted to. My thoughts made me completely giddy. I continued to watch and at the end of Philadelphia, turned off the set.


As I lay in my bed looking out at the East River, I felt a sense of peace and quiet. I thought, “Maybe I am dying, maybe I’m not. Whatever is happening, I’m fine.” I thought that God must have work for me to do, either here on Earth or outside of my body. The only thing I wanted to be was ready for either possibility. I thought to myself that everything in my life mattered and nothing in my life mattered. I began to think that this must be what it means to be free. I felt free of attachment, free of negative thinking, free of everything. I wish I could communicate how happy and joyous and humbled and peaceful I felt in this new- found freedom. I cried tears of joy and for the first time in over a week, I peacefully and blessedly fell asleep.

I don’t know what constitutes a miracle, but the next morning, my perception of a miracle manifested itself. Beginning at 6 AM, the nurses started coming into my room to inform me that my platelet count was rising—46, 60, 75, 85—with every blood sample, the platelet count kept going up. Finally at 1:00 PM, my doctor arrived to tell me that I had a count of 156. This was enough to begin my chemotherapy, which she had already ordered. After a painful and sad week, my condition began to improve.

While still in critical condition, I was visited by my friends Deborah and Reiko. I had first met Deborah in 1995 in her capacity as an Interfaith Minister and she became my spiritual counselor. In fact, it was Deborah who helped me develop many of my spiritual tools. After our counseling sessions ended, a friendship developed. Deborah introduced me to Reiko, who in 1997 offered to teach me the IN of Ware Soku Kami Nari. On March 31, the day after my awakening, my friends came to the hospital to meditate with me. We recited the phrases “Ware Soku Kami Nari, jôju, Jinrui Soku Kami Nari.” We did the divine practice for the large-scale purification of humanity and performed the IN of Jinrui Soku Kami Nari.

During our meditation, with my eyes closed, I began to feel something like a drill boring a hole in my head. Inexplicably, the feeling was not painful and I sensed it was for my own good. The vision that followed was one of Masahisa Goi. ‘Goi Sensei’ was drilling the hole in my head in order for me to let in my divine light. It was a profound experience—the first and only time to date that I saw his face in a vision.

These practices and meditations, along with Western medicine and my fierce determination, made it possible for my health to rebound enough for my doctors to begin chemotherapy treatments the very next day. I chose that day, April 1st, to be my re-birthday. April Fools Day is the perfect choice to celebrate a birthday.  As it is already miraculous, something else makes sense.  It's "Jeannie's" birthday, too. 

Within two months, my recovery was almost complete. Today, I have no cancer present in my lungs and the few lesions still visible are nothing more than pigmentation problems. My HIV viral load, which was 1.8 million (dangerously high) in February 2003, has decreased to the point where it is undetectable. Any side effects from the chemotherapy are so inconsequential that I pay no attention to them. I have energy to spare and am living my life with a renewed sense of spirit and purpose. I find my divine light very present in my heart, mind and body.

I consider my recovery to be miraculous. Continued recovery, however, comes with some responsibility. I perform the Universal INs of Ware Soku Kami Nari and Jinrui Soku Kami Nari regularly and I am working on other spiritual practices. I am writing two Universal Source Mandalas as well as saying “Jinrui Soku Kami Nari” for 70,000 individuals. These two additional practices have become something similar to a meditation. They are easy to do and completely lift my spirits. The mandalas are wonderful tools to assist me in staying open to receive my divine light. I have been informed that I am doing humanity a service when I say “Jinrui Soku Kami Nari.” There are moments when I am a bit skeptical, however, I continue to say the recitation. It is creating positive energy and being of service brings me great joy.

I have always possessed a strong determination to do whatever I wanted to do. Now, my determination has turned toward my complete physical and emotional recovery. Along with my spiritual tools, the mandalas and performing the INs regularly, I progress through this task with a sense of humor, light and great spirit.


It has been almost a year since I wrote that last paragraph. I was doing my work, completely happy in my physical, spiritual and emotional recovery. I had no idea of what was to come. On Friday, June 20, 2003, thirty-six hours after receiving the news that the cancer was no longer present in my lungs, my father died. The summer of 2003 was spent in mourning, albeit with a sense of purpose. I had received the gift of dealing with my own mortality just prior to my father’s passing. It did not make his death any easier, but there was a sense of lightness in which I experienced an expansion of my heart and mind. Realizing that my thoughts of Dad would now reside in my heart, I began to see my heart having the capacity to hold more kindness and compassion, along with my feelings for him. I thought there could be no better gift for a father to give his son.

Three months later, I developed a lump in my neck. The first thought among my doctors and I was that Lymphoma had developed. Part of me felt like a strange type of overachiever. One cancer a year was not enough; I had to have two. Biopsies and other tests determined it was not cancerous; however, subsequent tests proved inconclusive that it was any other type of illness. My doctors, as completely baffled as I was, determined it an Atypical Mycobacterial Infection, to be treated with antibiotics. In February 2004 I underwent neck surgery, which removed part of the infection. I was informed that I would have to begin a regimen of four antibiotics, which I would have to take for a minimum of one year.

The physical side effects of the antibiotics were quite debilitating. Fatigue, fevers, loss of weight and appetite, and dry mouth became part of my daily life. While I was meditating at this time, I had stopped performing the INs and was not completing my mandalas. I simply did not have the energy, or so I thought.
In July, when the side effects of the antibiotics were interfering too much with the quality of my life, I decided to stop taking them altogether. A week later, I began a regimen of traditional Chinese medicine, regular acupuncture treatments and Chinese herbs. I began to feel much better and was pleased that I made the decision to go off the antibiotics.

Two weeks later, the infection in my neck began to flare up and I had to go back on the antibiotics. I was quite upset and angry that I had to do this, but it seemed that it was something I had to do in order to clear my body of this infection. So, Western and Eastern medicine would have to work together.


Once again, my fierce determination to recover and live my life fully started to kick in. I began to think that maybe I did not learn my lesson completely when I had cancer, or when I was first experiencing the side effects of the antibiotics. It had now been about twenty months. Since early 2003, I had been dealing with two major health issues and my father’s death. It was a very tough time, so much so that I began to tell my friends that I was sick and tired of being sick and tired.
One afternoon following an acupuncture treatment, I began to feel a sense of acceptance over what was happening in my physical body. I immediately stopped and sat down for a moment. Here I was, remembering how I felt lying in my hospital bed, looking out at the East River.

An interesting thought came to mind. What would happen to me if I could completely “get out of my own way?” What would happen if I could completely free myself of my attachment to my own body? My friend Deborah thought that completely freeing myself of attachment was a rather lofty goal, one that I may not be able to achieve. She suggested that I begin by lessening my attachment to my physical body. Thinking about this afterward, I thought she might be on to something. Completely freeing myself of attachment to my physical body began to sound a lot like death. I mean, that does happen when we die. We no longer have an attachment to our physical body. Am I correct?

Lessening my attachment was a simpler task; one I could do every day. Through meditation, I could see those situations and experiences in my life in which I created negative energy. I had carried this negative energy with me for many years. I could begin to let go of the negative, which I no longer needed, and replace it with positive energy. The positive energy I would now be creating could be used to facilitate my own spiritual, emotional and physical growth, and then be released into the world. Additionally, I would revisit those life experiences that I used to create positive energy.

I believe it is beneficial for me to acknowledge the hardships as well as the rewards. I will say that it is still my goal to free myself of all attachment. Lessening my attachment every day is the way I will continue towards that goal. There is no time frame here—no saying to myself that I have to do this in six months. It may take the rest of my life to achieve my goal, if I achieve it at all. It doesn’t matter. I can’t think of a more productive way to spend my time.

During this time, I am performing the INs again, and I have resumed working on my mandalas. They are an important part of my many spiritual tools. The moment of freedom that I described earlier came to me quietly and peacefully, but not quickly. Years of prayer and meditation, making mistakes and remembering who I am had to unfold first.

My spiritual and emotional journey “picked up steam” the day I was diagnosed with HIV. It led me to a New York based organization called Friends In Deed. The loving and talented friends I encountered there assisted me in remembering who I was and what I can do. They helped me to remember that the only thing I have to deal with is my life right here and right now. My past is history and my future only imagined. I was shown a way of life in which I could avoid making negative and positive predictions. My attempt to live “in the moment” every day of my life is not easy. It may be the one, and perhaps only place in which I can take care of my emotional and physical health. Another lesson I learned is that the quality of my life is never determined by its circumstances. It is a powerful teaching. It took years to accept this and once I did, I became able to remain present. It enabled me to look upon having cancer as a gift.


The fact that I had cancer is incidental. We all have our rough spots in life. The important thing for me to remember is that I lived during and through the experience. I don’t mean just surviving it, although I wanted that, too. I mean living in the experience and facing it no matter what it brings; nothing bad happens. The quickest way through a painful experience, I believe, is to simply go ahead and have it. Try to avoid it and it’ll just come back and bite you in the ass.

Was this a painful, sad and difficult time in my life? Damn right! Did I have the most fun? Did I learn more about myself than I ever thought I would? Same answer. It was a high time and one hell of a ride.

This was my wake-up call. It’s now time to take what I learned and put it to use. The spiritual teacher Ram Dass once said, “Life is perfect, and it stinks.” I am happy in my recovery, and I have my work cut out for me.

Oh, the celebrity who first “broke the bank” on Pyramid was Joel Grey in the Spring of 1973. I am available to audition for the sequel to Rain Man.

I wish you infinite peace, love and gratitude. May Peace Prevail On Earth.

© 2005 David P. Mikelberg


Ware Soku Kami Nari is a spiritual phrase that conveys the feeling "I am one with the Universe." Jôju is a Japanese word meaning, "accomplished". Jinrui Soku Kami Nari is meant to convey the feeling, "Humanity is one with the Universe." IN, pronounced "een", is an Oriental word similar in meaning to the Sanskrit word "Mudra". An IN is a prayer; a combination of hand gestures, specific breathing and harmonious vocal sounds. For more information about these or any of the specific spiritual practices mentioned above, please contact the Byakko Shinko Kai at Masahisa Goi (1916-1980) is the founder of Byakko Shinko Kai.

Friends In Deed is an organization that provides emotional and spiritual support to anyone suffering from HIV/AIDS or any life-threatening illness, as well as their families, friends and caregivers. They also support anyone dealing with grief and bereavement. For more information, please visit their web site at

I don't know how I remember this, but one of Joel Grey's winning subjects on Pyramid was "Things on a Ceiling."