"Tenpa Rinpoche" and Other Urban Legends

"If you do not tell the truth about yourself,
then you cannot tell it about other people."
~ Virginia Woolfe

In the 3.5 years since I was diagnosed with Wegener's Granulomatosis, I've seen more doctors than I can count. I've been hospitalized about 20 times and long ago lost count of my ER visits. Some of these doctors have been excellent-- truly exceptional in all ways. Others have ranged from great all the way to downright awful. That's to be expected with such a large sample size of physicians.

Treating a rare disease like Wegener's is unbelievably difficult, and I have a pretty tough case according to my doctors. Even my lousiest of lousy doctors from the past acknowledged the complexity of treating me.

All except one.

Ah, but that statement implies he was a doctor and not just someone pretending to be one, doesn't it?

I've kept a particular chapter of my life off this blog. The individual I'm about to discuss lives a dark, mean life-- one seeped in the cruel desire to knowingly inflict harm. I've wanted to protect my readers from his nastiness. I'm only posting it now because 1) I fear for others who are being deceived by him and 2) he's now decided to post lies about me on his blog and on Twitter.

I don't like bullies. Never have. I'm just not the cowering type. I have been known to be overly trusting, though, and have a very hard time believing that someone could actually want to hurt and deceive me. And due to that, I was totally blind-sided.

So (sigh) here goes... In late 2007, a man who calls himself Tenpa Rinpoche contacted one of our monks in Mongolia. He claimed to be a reincarnated lama-- a tulku-- who blogged about Jetsunma and our temple in a favorable way. (Red Flag #1--Hi, I'm a lama you've never heard of) In Tibetan Buddhism, tulkus are treated with great respect. "Tenpa Rinpoche" claimed that his recognition as an American tulku was kept secret. (Red Flag #2--We had never heard of any other Tulku whose recognition was kept secret) He told us which authentic Lamas recognized him, and we took him at his word. (Red Flag #3-- All the Lamas he listed were conveniently dead and couldn't attest to or deny his claim.) We didn't ask to see his credentials/ official recognition documents.

He also told us he was a physician trained as a Tibetan Medical Doctor-- a wholistic approach similar to Chinese Medicine. I have deep respect for Tibetan Medicine, knowing the complex training true practitioners must undergo, as well as its curative and restorative powers.

The man who calls himself Tenpa Rinpoche also told us he had Stage IV lung cancer and didn't have long to live. He claimed to be living alone in the California desert without proper medical care or the ability to care for himself. Jetsunma, with ceaseless compassion, invited him to join her at our Arizona retreat land called Dakini Valley.

While they were there, I had a dream about him in which he helped me. The next day I told another monk about the dream. He passed the letter on to "Tenpa Rinpoche," who said he could definitely help me, and I should come to Dakini Valley right away.

At that point in time, I had been on oxygen for 1.5 years and was extremely debilitated. The initial course of treatment had failed and I'd had a non-stop stream of complications-- some life-threatening. I had a couple of good doctors, but even they were stumped as to what to do next, as they were not specialists in treating Wegener's. I hadn't been able to return to work in 1.5 yrs and couldn't even walk my dogs. I was in despair. The idea of a Tibetan Medicine Doctor who was also a tulku treating me was a ray of hope.

I went to see him within a couple of days. Thankfully-- and I cannot say "thankfully" with enough emphasis-- Jetsunma was there with me the whole time. He pretended to read my pulses and scolded me quite harshly for taking chemo, even though it is the standard of care for treating Wegener's. He gave me traditional Tibetan medicine which is quite famous for clearing the subtle energies of the body. It is so powerful that even a dying person would feel better to some degree. He assured me that it wouldn't interfere with my medications, though he mocked me for continuing to take them.

I followed his instructions over the course of the next 3 weeks, and I did notice an improvement in my energy and strength. I had sat in the presence of my Lama that entire day-- at times enveloped in her arms as she consoled me. It is an immeasurable blessing to spend time with one's Lama. A pure Lama such as Jetsunma can remove many obstacles to one's health.

I believed "Tenpa Rinpoche's" claims to be a real Tulku and a real physician, so I wrote him and thanked him profusely for what I thought were his blessings.

Within a couple months however, it was clear that my health was seriously declining. I was extremely short of breath, weak and in excruciating pain. All the symptoms that indicated a major Wegener's flare. By then, our sangha had taken "Tenpa Rinpoche" into a sangha member's home and were providing him with 24-hour care. We thought he was dying. He heard that I was in bad shape and offered to treat me again.

I explained that the increased energy and strength had been temporary and that I was declining rapidly. He again pretended to read my pulses. Then he told me I was "perfectly healthy" and "cured." When I expressed my doubts, he made the remarkable claim that I was faking my illness and should be back at work instead of "wasting [his] time." I could barely walk 5 feet unassisted. He also told me to stop taking my medications-- that they were weakening me and convincing me I was still sick.

Even through the cloud of pain, I realized he was wrong. I knew I'd die if I went off the meds. I stood on the brink of death and had the good sense to take a step back.

Within a few weeks, "Tenpa Rinpoche" asked me to open a wholistic practice with him-- I as a chiropractor and he as a Tibetan Medical Doctor. Then he proceeded to explain what kind of a practice he envisioned, which is when I felt the floor fall out below me. He said we'd first find a lawyer who would agree to send us Personal Injury and Worker's Comp cases that we could "bilk for money." He explained that my Chiropractic license would allow us to bill insurance. He said, "I'll meet with the lawyer alone and we'll have us a talk. That's a conversation you don't want to know about, believe me." I told him that my office was a 100% cash practice (ie no insurance), a sweet family practice that specialized in prenatal and pediatric care. I never did PI or WC because I don't like it. (You often have to deal with sleazy lawyers, bought-off doctors and malingering patients.) He replied "Those days are over." I became nauseous, my knees felt weak and I felt faint. I have strong ethics and the thought of working like this was inconceivable to me.

I was nowhere near being able to work and he was (I believed) a dying man, so I allowed him to talk about this imaginary practice over the course of the next couple weeks. He told me my opposition to the idea was because I had "concepts" about the way I practiced, and those needed to be cut. This is another way he hooked me into believing him-- by preying on my desire to change.

Nothing came of it, and within a couple months the jig was up, as they say.

In that time, we discovered his real identity is William Cassidy. He's neither a tulku nor a physician, and he certainly doesn't have lung cancer. Actually, he's a convicted felon who was in violation of his probation at the time. Before he darkened our doorstep, William Cassidy had been charged with raping his wife, first-degree arson and attempted battery constituting domestic violence. He had pleaded guilty to arson and attempted battery and was released on probation after serving part of his sentence in Nevada. When it was discovered that he had violated the terms of his probation, it was revoked and he was returned to prison to serve out his remaining sentence.

By the time he was released, he was one angry guy. He had stolen financial records from our Buddhist organization while we were caring for him and didn't like that we called him on it. Because of all this, and because we had discovered his true identity, he began a campaign to defame my Lama, our organization, our practitioners, the monks and nuns, you name it. He has used his blog to spread hatred and lies. It's been a pretty ugly couple of years. You can read about the rest of it here.

Yesterday on Twitter someone referred to him as "Tenpa Rinpoche." They seemed to think he was really a tulku, so I told them about his real identity. Today he wrote a pretty horrific blog about me as a result.

He claims that I was "up and running in [my] medical practice" the last time he saw me (in early 2008). That's all news to me! For one, I'm not a medical doctor, I'm a chiropractor. So I had a Chiropractic practice, not a medical one. That's not just a technicality, it's a matter of training and licensing. Furthermore, all of my patients, friends, sangha members and physicians know that I haven't been able to return to work since I was diagnosed in June, 2006. I moved to Maryland a year ago and am still nowhere near being able to work.

He claims that I "gleefully explained all the ways it is possible to cheat insurance companies." I guess when he decided to lie, he forgot that I never dealt with insurance. I'd have no idea how to work with them, much less deceive them.

He claims that insurance companies are "cheating [me]" since I moved to Maryland. I have no idea what this means. My insurance is paying for my medical treatment with no arguments. I champion health care reform because everyone deserves the excellent coverage that I have.

He also spends a little time in familiar, cruel territory--telling me my Lama is harmful to me, that I've broken my vows, that my speaking the truth about him is "unseemly," that my lungs and kidneys are "collapsing," that I don't have long to live, and that I will be reborn as a two-headed snake.

Golly.

Though it feels like it's soiling my blog to post it, I'm copying his entire post here for you to read.

Holy (Sweet) Not Always

(The post begins with a giant picture of a real two-headed snake.)

Here is a letter that I received almost two years ago to the day:

Dear Tulku Tenpa Rinpoche,

I must apologize for interrupting what I hope is still a beautiful day in California. I hope you are doing well, finding restoration in the ocean air. I lived in southern California for some time, spent a lot of time on the beach. Even today I find that remembering the waves washing in and out-- the way they swell out of nowhere, crash thunderously, and the impossibly tiny fizzy sound produced as the last bit of water is drawn back from the sand--brings a cleansing kind of energy to my mind. And though your mind has no need of cleansing, may it be the perfect medicine for your body.

I am not a gifted writer, so I recognize a complete lack of segue here.... please forgive me. I wanted to give you an update on how I'm doing. With a few ups and downs, I feel just great! There was an immediate sparkle back in my eyes. I could call it "chi" or "life force" or my "giddy-up," but whatever it is, I feel alive again. I have been shedding the skin of a sick person-- most happy to be leaving it behind-- and remembering what vitality feels like. I've even had actual dreams of doing physical activities I used to enjoy. My mental clarity is coming back, too. In all, I feel quite like I'm rising out of a deep sleep (maybe more like a coma!).

I'm doing my best to receive your many blessings, to really work with what you told me and change. (While it can sometimes be a negative habitual tendency, I am quite tenacious when given a challenge!) Rinpoche, I am so grateful to have received such a blessing. Even my puny mind can recognize some part of the enormity of what you did for me. The tenderness with which you and Jetsunma cared for me still makes me cry. I am still with you, with Jetsunma, as though none of us have left that room. When you have a moment, please guide me as to where to go from here.

More importantly, though, please take care and nurture yourself back to excellent health. I make this plea to you on behalf of all sentient beings : Please stay. Please remain strong. Please hold back the darkness and help us find our way out.

Much love,

(signed)

Sedona, Arizona

With that thought in mind, it is of singular interest to me when I see that same individual -- now in Maryland -- tweeting and posting all sorts of ridiculous nonsense, hither and yon. So, since the above letter contains the specific request, "guide me as to where to go from here," I do believe I will respond.

Dear Suffering Human Being In Samsara:

The best place to go from here is examination of the completely developed result of the actions your cohort has ordered you to perform.

You have engaged in verbally abusing someone. "Verbal abuse" is defined by a specific person who is addressed, harsh speech to that person, and that person's resultant discomfort. The types of verbal abuse are described as (1) public speech that exposes someone's faults, (2) indirect speech that wounds someone, and (3) private speech that wounds someone. The completely developed result of verbal abuse is rebirth as a sentient being in hell. If born as a human, the result is to enjoy engaging in harsh speech. One will hear unpleasant words and sounds. One will be constantly criticized. Even if one tries to make amends, this will become the cause of further criticism. The environment will be hot and dry, with numerous diseases, and poor water.

You have also directly engaged in divisive speech, defined by two people who are either neutral or in harmony, speech intended to divide the parties, and actual discord between the parties because of said speech. Divisive speech is described as (1) public speech, directly addressed to the parties, (2) indirect speech, and (3) private speech. The completely developed result of divisive speech is rebirth as a sentient being in hell. If born as a human, the result will be to enjoy discord, and to live an exceedingly lonely life. There will be numerous family quarrels, and one's family will be broken. The environment will be inhospitable, and travel will be difficult.

Engaging in verbal abuse and divisive speech is unseemly conduct for someone who has taken vows as a nun. It is made even more unseemly when one has taken vows as a physician, and finally, it approaches the level of mindlessly reckless behavior when one is as close to death as you are.

Indeed, when I encounter someone who professes to keep the vows of a Buddhist nun, and those of a physician, who openly and notoriously engages in verbal abuse and divisive speech -- even to the extent of addressing such speech to the Nirmanakaya -- I am left with the impression that this person runs a very real danger of being reborn as a two-headed snake.

So, what to do? At this point, it is not enough to refrain from such unwholesome conduct, nor is it enough to practice the opposite, wholesome conduct. Even confession has its limitations -- after all, we are not Catholics here.

Permit me to suggest that what might be enough is to carefully examine the view that permits such speech to take place, albeit in a fashion that transcends care and examination.

It is an interesting situation, don't you think? Your precious teacher, incapable of fault, literally brings you to me. She tells you to believe one version of reality. You have one sort of view at this juncture, and with a kind of shorthand, we will call this your "positive" view. You believe you have been helped, and helped by a mighty power.

Subsequently, your precious teacher, incapable of fault, literally tears you away from me. She tells you to believe another, opposite version of reality. You have another sort of view at this juncture, which we will call your "negative" view. You believe you have been harmed, and harmed by a mighty power.

Lets take your precious teacher, incapable of fault, out of this equation for a moment, shall we? Lets concentrate on you.

What determines your "positive" and "negative" views? On what do you base your beliefs? If your views are based on the fallacy of whatever people tell you, and your beliefs based on your views, then your conduct, which is based on such beliefs, is also fallacious, is it not? What is the point in connecting view and conduct?

Speaking in terms of Wegener's granulomatosis, which will soon kill you unless you wake up, what determines your "hot" days and "cold" days? In strict Tibetan medical terms, the disease is said to have its ultimate origin in the nexus of attachment and aversion. If this disease arises in dualism, and your relationship with this disease is governed by dualism, then any reinforcement of dualistic thinking will accomplish precisely what?

Interesting to me that you were up and practicing medicine when last I saw you, gleefully explaining to me all the ways in which it is possible to cheat insurance companies. Interesting to me that when you moved back to Maryland, you were the one being practiced upon, and the insurance companies were cheating you.

Before your kidneys and lungs collapse, why not collapse the boundaries between your positives, negatives, help, harm, hot, and cold, and come to some understanding of the nature of your own mind?

If today, you tell the world that you love me, and that I have helped you, that is part of your affliction and has no effect upon me. If today, you tell the world that you hate me, and that I have harmed you, that is part of your affliction, and has no effect upon me. Fabrication has no effect on anything that just simply is.

This fabricated love and hate spring from the same fabricated water -- Lake Subject-Object -- that drowns you in fabricated samsara and drowns you in your fabricated illness. Many, many times I already tell you: don't swim in mirages!

Every day, since the day I first heard of you -- since your cohorts sent me your photograph, which I still have -- every single day since then, no matter where I was or what I was doing, I have dedicated twenty-one recitations of the Medicine Buddha mantra exclusively to your well-being.

This, I will continue to do... as you say... as though none of us have left that room.

Yours in the Dharma,

Tenpa

So there we have it. Rainstorms, and cyclones, and clouds come and go through the sky. Stars fall through the sky, and planets move through the sky, but the sky is always the sky. None of these things change or in any way alter the sky's essential nature. Ultimately, this is true, although conventionally speaking, it is best to discourage rebirth as a two-headed snake if at all possible. The opportunity to hear the dharma in such circumstances seems almost as rare as human rebirth.

Almost.

William Cassidy spends his days spewing hatred, venom and deceit into a world that is already overflowing with suffering. He creates and fights imaginary demons on his blog, convincing himself of his intellectual superiority.

It must consume hours of his life every single day. Maybe they don't have good tv reception where he lives?

For Kyler

Forgive me if this post is choppy, poorly written or seems hastily put together. It's midnight and I've just learned about a 5 year-old boy in New Jersey named Kyler VanNocker who urgently needs your help.

When Kyler was 2-1/2 years old he was diagnosed with Neuroblastoma, a rare childhood cancer. He was in remission for roughly a year. Recently his parents learned that the cancer has returned with a vengeance. There's only one treatment option left for Kyler, but his insurance refuses to cover it, not because it's overly expensive, but because of a technicality-- it's in clinical trial. In fact, all the standard of care treatments for neuroblastoma are clinical trials. His insurance would rather let him die than pay for the only chance he has at survival.

Thankfully, the parents of kids with neuroblastoma watch over each other. A couple of the moms have taken the matter into their own hands and are asking everyone who learns about Kyler to send $1 to his family and spread the word.

If you'd like to help save Kyler's life, you can send your donation to :

Paul and Maria VanNocker
115 East Franklin Ave
Edgewater Park, New Jersey 08010

The Philadelphia Daily News did a story on Kyler. Here it is, in case the link expires.

Insurance vs. Kyler

By Ronnie Polaneczky
Philadelphia Daily News

Daily News Columnist

LOOKING at Kyler VanNocker, whose fifth birthday was Monday, it's impossible to fathom that he could die from the disease he's battling.

He's bright-eyed and energetic as he tears around the house he shares in Edgewater Park, N.J., with his parents, Paul and Maria, and siblings Kaden, 6, and Anelise, 3. He's just as active at pre-school, where he's learning his numbers and the alphabet.

But the truth is, Kyler has neuroblastoma, a rare and deadly form of childhood cancer that attacks the nervous system, creating tumors throughout the body. Diagnosed at 2 1/2, he endured more than a year of treatment at both St. Christopher's Hospital for Children and at Children's Hospital of Philadelphia.

His longest hospital stay lasted almost seven months, during which he nearly died twice from complications that caused kidney failure, as well as heart, lung and liver disease. Finally, he went into remission in September 2008 and reveled in a healthy year blessed with the mundane miracles of childhood.

And Paul and Maria allowed themselves to exhale.

Ten weeks ago, routine follow-up tests indicated that Kyler's cancer had returned. This time, his treatment options are few, since recurrent neuroblastoma brings with it an entirely different set of medical considerations than the ones associated with an initial diagnosis.

Kyler's CHOP oncologist, Stephan Grupp, says that Kyler needs a treatment called MIBG therapy, in which a radioactive drug, delivered intravenously, travels to tumor sites, slamming them with radiation.

Depending on how Kyler responds, he may need up to three rounds of MIBG to knock his cancer back into remission.

MIBG is "less toxic than chemotherapy, and is usually tolerated well by patients," says Grupp, a world expert in neuroblastoma, thanks to CHOP's status as a national referral center for kids with the rare disease. MIBG therapy is the only effective treatment available to Kyler at this stage of his illness. Without it, he won't live to see his sixth birthday.

Unbelievably, Kyler's insurance carrier, Harrisburg-based HealthAmerica, has denied coverage for the treatment, which it considers "investigational/experimental" because there is "inadequate evidence in the peer-reviewed published clinical literature regarding its effectiveness."

The therapy is not approved by the Food and Drug Administration, another criterion that HealthAmerica requires.

"It's considered experimental because not enough kids with recurring neuroblastoma live long enough" to become candidates for MIBG, says Paul VanNocker, 44, a heavy-industrial-equipment salesman (Maria, 37, is a homemaker). "So, really, all treatment at this stage of Kyler's disease is considered experimental."

Only about 650 children in the United States are diagnosed each year with neuroblastoma. Half of them, including Kyler, have the most lethal form of the disease. So it's tough to study a large enough cohort of patients like Kyler to yield research results that HealthAmerica might consider valid.

But that doesn't mean MIBG is ineffective.

"It's considered the standard of care in Europe and the United States for recurrent neuroblastoma," says Grupp. "It's not an unproven treatment with no basis in medical science. Actually, the results are often very good."

Paul VanNocker appealed HealthAmerica's decision, which once again denied MIBG.

"They have a plan for Kyler," says Paul angrily. "Their plan is for him to die."

HealthAmerica spokeswoman Kendall Marcocci told me that she was not permitted to divulge the amount of money the company has paid so far for Kyler's treatment, but Paul VanNocker says that the figure is between $1.6 million and $1.8 million. He was not sure what Kyler's MIBG therapy would cost, since it's unclear how many MIBG treatments Kyler might require, but Grupp says that the treatment is actually less expensive than other cancer therapies.

Which seems to support Marcocci's contention that HealthAmerica has declined Kyler's MIBG therapy not because of its cost, but because of its experimental nature. Marcocci wouldn't discuss specifics of Kyler's case but said the company isn't in the business of treating patients; it instead applies a "medical-based-evidence approach" to determining whether a requested treatment is a covered benefit. Except that, by denying the only effective treatment available to Kyler, HealthAmerica has usurped the opinion of the doctor who knows what Kyler needs to survive.

Sorry, but that absolutely puts the company in the business of treating patients.

I have to say, when I hear people fret that a public insurance option would take medical decisions out of doctors' hands and place them in the mitts of bloodless bureaucrats, I have to scratch my head.

Do they not understand that bloodless bureaucrats are already in control? And that the "death panels" everyone fears already exist in the insurance industry?

To deny Kyler coverage is to prescribe his death.

Last week, CHOP agreed to proceed with Kyler's first MIBG procedure, assuming that Medi-caid will pick up the tab. He withstood the procedure well and is back at school, happy to be among his playmates again.

If Medicaid doesn't come through, the VanNockers have no savings to pay for additional MIBG procedures that Kyler might need to stay alive, because the out-of-pocket costs associated with Kyler's illness have left them bankrupt. Paul estimates that he and Maria have spent "well over $60,000" of their own money - exhausting cash savings, IRAs and almost every asset but their home to pay expenses not covered by insurance.

"If Kyler can't have MIBG, he will have to enter hospice care," says Paul. "He'll have a good month, and then he will lose the ability to walk. Then he will become bedridden. And then he will die a slow, agonizing death."

MIBG is the only option to postpone that terrible possibility for as long as possible.

But the death panel's decision, it seems, is final.