Holistic Recovery from Schizophrenia

Snap out of all that misery and do something

Misery memoirs abound in schizophrenia. Here are two more, in all their depressing details. Anybody reading these New York Times reviews would come away with the strong conviction that schizophrenia is a disease, is hopeless, and people are naive if they think any differently. Many more people will come away with this notion, not even having to read the books, as I see that the review is now number 5 in the most e-mailed health articles. Relatives of the afflicted are already busy spreading the misery.

The title of the NY Times review is stereotypical: Symphony of Pain in Two Accounts of Schizophrenia. The misery only gets worse. “Each is a model of narrative restraint, but in combination they combust, conveying the intensely painful experience of this disease in the literary equivalent of quadraphonic sound.”

It is extremely premature for Patrick Cockburn, the memoirist father, to give up on his son Henry, who is the same age now, give or take a year, as my son Chris, but given up he has done.

“A foreign correspondent for the British press, Patrick Cockburn was on assignment in Afghanistan in the winter of 2002 when his son Henry, 20, was fished fully clothed out of an icy river back home. Henry’s mother had noted “sinister changes” in his behavior for months, but this was the big break, with hallucinatory voices and visions so threatening that the river seemed the best place to hide. He was taken to a mental hospital and since then has never lived unsupervised or entirely free of disease.

The Cockburns are a prominent Irish family of letters — Mr. Cockburn’s brother Alexander is the noted political journalist — and Henry, until his “final decline,” in Mr. Cockburn’s words, fell into the expected mold of verbal, artistically talented British schoolboy.

The elder Mr. Cockburn dispassionately reconstructs his own mental journey in the intervening years, from his first naïve assumptions that Henry would recover and resume his previous life, to his final stark, resigned descriptions of Henry at age 27, living in a halfway house in London, a person who “spent a lot of his waking life thinking about where he could get his next cigarette and where he could smoke it.””

If anybody needs help here it’s the father and the whole talented, but self-absorbed family, for giving up on Henry, instead of working to help their son and the mess going on with themselves.  It’s all about them, isn’t it? Their talented family, their despair, their conviction that Henry is the problem. If Cockburn is such a top notch journalist,why isn’t he more investigative when it comes to his own son? It surely wouldn’t have taken him too long to find out that medications do more harm than good, and that there is a robust community of people and therapeutic practitioners who believe more in the Henrys of the world than Henry’s own father does.

The second memoirist is a daughter writing about her mother. It is, indeed, much harder for children to deal with a parent who has been given a diagnosis of schizophrenia, but I’m not willing to give this author a complete get out of jail free card. “Finally, in desperation, both daughters changed their names (“She took Isaac Bashevis Singer’s last name, I took Bela Bartok’s”) and severed all contact with their now homeless mother.”

Both authors shoved the job of learning to understand and love out the door and into half-way houses and the street. They did exactly what is not recommended by the holistic therapeutic community in helping someone overcome their pain. What they also do, and I’m sure the authors are oblivious to this, is that they make the job of the rest of us harder. We who know a better way continue to fight the smug authority of the medical profession, who know nothing about schizophrenia other than what the drugs companies feed them and the dimished expectations they learned in medical school. These kind of memoirs allow psychiatrists and families to keep the patient perpetually chronic.  “Everybody knows” schizophrenia is incurable.

“In the 60-odd years separating Ms. Herr’s psychotic break from Henry Cockburn’s, mental hospitals have closed in droves, community-based services have proliferated, generations of antipsychotic drugs have been patented. The disease, at least in the severe form represented here, remains undaunted. It is hard to think of one that requires more courage from patients or their families.”

Cry me a river. Boo hoo. Let’s get positive here and stop perpetuating the idea that schizophrenia is incurable and sad.

The market for schizophrenia memoirs with a twist

I attended a writers’ conference this week-end. There was a opportunity in the program for me to sit down with a real, live New York City agent and get feed-back on twenty pages of my manuscript.

The agent didn’t leap up and grab me and demand to know where this manuscript has been all her life. Instead she said, after complimenting me on my strong writing, that it looked like “Holistic Recovery from Schizophrenia: A Mother and Son Journey” was for a niche market. I hadn’t convinced her of the potential market in my query letter, and even though she, as an agent, knows lots of publishers, she’s not a mind reader. She doesn’t know the schizophrenia market, nor the holistic treatment side of schizophrenia treatment. She needs facts and numbers. I didn’t provide any.

I’m prepared to self-publish, but I’m not there yet, mainly because I like the idea of someone else of influence believing that there’s a market for this kind of book. The twist in my book (actually, there are several) is that I’m a mother who believes in minimal medication, if any, I’ve undergone some very unusual types of treatment with my son that aren’t on most people’s radar screen, and I believe that schizophrenia begins at home.

Please contact me if you are aware of books or websites showing facts and figures that can help me determine the book market for 1) memoir; 2) schizophrenia; 3) holistic treatments; 4) energy psychology or psychiatric literature. I need to know more than just that schizophrenia affects 1 in 100 people.

Green eggs and ham

Chris is up and about early these days. This morning, I heard the shower going full tilt at 6 a.m. and then at 7 a.m. there was a knock at the bedroom door. Would I like some tea, some freshly squeezed orange juice and some type of South American omelette?

I’m not normally an egg person in the morning, but in solidarity with Chris, I decided I would be one. I prefer something bready and sweet washed down by black coffee. A South American omelette sounded intriguing. I’m thinking cheese, chiles, perhaps some potatoes and a bit of jambon.

Chris kept up a steady stream of chatter from the kitchen as I sat at the dining room table. This was not just any chicken, apparently. “The eggs come from an Araucano or ‘South American Rumpless’  hen, and guess what, the shells are green!” Sure enough, on closer inspection, they were. “And, wow, the yolks are bigger, do you want to see?” Chris enthused.

I was beginning to turn green myself at the thought. “No thanks. Just bring me the omelette when it’s ready.”

The omelette arrived, with onions. The concoction was green tinged. The onions were undercooked. Chris set a bottle of green pepper sauce next to my plate. The tiny bottle was nearly empty, staining the glass the same light green color as the eggshells.

I tried a forkfull of the eggs, but lost my appetite for another stab at them.

“No hard feelings, Chris. I just can’t.”

Chris took it in stride. Cooking is a creative outlet for him, and he has produced some really eye-catching and appetizing meals. Today’s breakfast just wasn’t one of them. Emerging from the hospital two years ago, he began to take a sudden interest in cooking. All through his childhood and up to the hospitalization, he didn’t seem to care about color, texture, smells and how they cha cha rhythmically together in food. He’s been waking up in so many ways. He’s becoming more and more alive.

Brain shrinkage okay for schizophrenia, but not for depression

I follow a blog called Family Dysfunction and Mental Health by Dr. David Allen. I stopped commenting on that blog because the last few times my comments did not appear/were not approved. Dr. Allen’s blog appears to have a healthy number of followers, but few comments. I noticed that the people who tended to comment are opinioned about his views on schizophrenia. They continuously challenge him on his views that schizophrenia is a “true” brain disease.

Since I am blocked from commenting on Dr. Allen’s most recent post, I’m making my comments here. Dr. Allen’s post is about the latest research findings* that antipsychotics shrink the brain. This rather important information was sat on for several years by Dr. Nancy Andreasen, one of the co-authors of this paper. Dr. Andreasen sat on the information because she didn’t want people to go off their antipsychotics, even though her research indicated that these medications damage the brain. (Dr. Andreasen built her career on the pharmaceutical lie that antipyschotics actually “protect the brain.”) The psychiatrists I dealt with as late as 2004/2005 were telling me that if Chris didn’t take these drugs to “protect” his brain, his brain was going to look like a concrete block of Swiss cheese. Thanks, Dr. Andreasen.

Dr. Andreasen’s position is typical of doctors who think they are God and yet have a skewed version of what it means to be God. In this world, the Doctor God forces treatment on psychotic people by withholding the truth, but is a “partner” in decision making with the otherwise sick but so-called mentally healthy. In my world, God empowers us all to make the best choices for ourselves.

Now, back to Dr. Allen. Dr. Allen now realizes that he was taught the wrong thing about brain atrophy. “I had been taught that this phenomenon was first discovered in patients who had never been treated with antipsychotic medication.”  But Dr. Allen then goes on to introduce a spurious choice that treating psychiatrists have no right to make. “Of course, even if it was entirely due to the drugs, one would still have to weigh the risks of cerebral atrophy versus the risk of being chronically tortured by accusatory hallucinations and living out on the street, as was well-portrayed in the movie The Soloist.” (Any doubt what choice Dr. Allen would make for them?)

He interjects a straw man argument of skid rows littered with unmedicated schizophrenics:

Go check out Skid Row in L.A. in person if you don’t believe it. That part of town is actually marked with a sign that says, “Skid Row.” See the folks on street corners loudly preaching incoherent gibberish about the Gospels for hours to an audience of…no one at all.

I despair for psychiatrists who show little understanding for why people are on skid row and the choices they have made to get there, who believe that bad drugs are better than no drugs at all. Why not acknowledge that many people on skid row are there because they don’t like the side effects of the medications they are given, their families refuse to take help them, and psychiatry isn’t interested in what makes them tick in the first place?

Schizophrenia is the bread and butter of the mental health industry, as long as the patients remain patients. Chronic schizophrenia is a goal. Naturally, the psychiatric profession denies this, but here we have it in print: knowing that the drugs aren’t useful but not caring, either. There is outrage about the mess called skid row, but not about the failure of understanding that drove them there in the first place.

Dr. Allen is really worked up about antipychotics being used as antidepressants. Readers of my blog are also concerned about this misuse of dangerous drugs, but why is Dr. Allen saving his outrage for people with depression (a mental health condition that is historically easier to treat than schizophrenia) instead of directing his outrage where outrage is due: that schizophrenia patients continue to be lobotomized with drugs that don’t work except to make them compliant as patients?

Showing favoritism for the depressed, he writes: “Nonetheless, these results should certainly give pause to any doctor treating a non-psychotic patient with anti-psychotic medication – especially since much safer alternative drugs are available. This potential risk is on top of the serious risks that these medications may cause diabetes, high cholesterol, and a chronic untreatable neurological condition called tardive dyskinesia. As all these risks are cumulative, long term treatment of non-psychotic individuals with anti-psychotics before all other measures are tried is particularly reprehensible.”

Well, I can’t get worked up to the same extent as Dr. Allen over depressed people when I know that psychiatry has failed at its bigger challenge with schizophrenia patients and has much less sympathy for their plight. It’s equally, if not more, reprehensible for schizophrenia patients to have diabetes, tardive dyskinisia, etc. since psychiatry has not exhausted all other measures. Exhausting all other measures is tiring work. Rather than do the work, biochemical psychiatry claims there are no other measures.

The title of Dr. Allen’s post is “Antipsychotics are for Psychosis, Not Insomnia.” No, they are not. These drugs don’t cure psychosis and they have horrible side effects and according to current research, they shrink the brain. So, why does the psychiatric profession keep insisting that they are for psychosis? What if doctors had insisted, in the face of important evidence to the contrary, that thalidomide was for pregnant women and only pregnant women? 

On a positive note, is it possible that antipsychotics actually don’t shrink the brain, and we are simply being primed for the next generation of expensive chemicals to be foisted upon us? There’s a name for that practice that eludes me.
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Archives of General Psychiatry,“Long-term Antipsychotic Treatment and Brain Volumes: A Longitudinal Study of First-Episode Schizophrenia,” Beng-Choon Ho, MRCPsych; Nancy C. Andreasen, MD, PhD; Steven Ziebell, BS; Ronald Pierson, MS; Vincent Magnotta, PhD, Arch Gen Psychiatry 2011; 68(2):a128-137).

NAMI people: Trust your instincts

Here’s an excerpt from an e-mail I just received from NAMI. NAMI drives me crazy because it won’t  recommend anything until “there is a growing body of evidence” or “research is now saying that . . . ” In most circles its hesitancy would be called “lack of confidence.” Had I waited for a “growing body of evidence” Chris would not be where he is today. 

NAMI doesn’t reserve the same reverence for do-it-yourself cures as it does for big Pharma. It “mentions” religion and spirituality almost like an afterthought. Just another remedy to add to many that may “help” but never cure.

RELIGION AND SPIRITUALITY: ASSETS OR LIABILITIES IN RECOVERY?

For those who live with mental illness, the role of religion or spirituality in recovery may often be ignored.

However, there is a growing body of evidence that recognizing this aspect of a person’s life may be beneficial to recovery.

NAMI is proud to present Nancy Clare Kehoe, Ph.D. who addressed a packed audience last year, as a presenter for this year’s convention.

She will address ways in which religion and spirituality may be a force for good in the recovery process as well as touching on the religious professionals, beliefs and traditions that may be harmful to a person’s recovery.

Dr. Kehoe is a member of the Religious of the Sacred Heart and a psychology instructor at the Cambridge Health Alliance, which is affiliated with Harvard Medical School. This special presentation is scheduled for Friday, July 8.

Mental illness and the church

Today’s story, entitled “Living with a Schizophrenic,” comes courtesy of the Catholic News website. I was rummaging around on the Internet to back up my contention that the modern church, using psychiatry, has hoodwinked everybody, including itself, about the biological basis of the “schizophrenia disease.” The early Christian church, through a series of conventions or “councils” as they were referred to then, succeeded in ensuring that correct spiritual thinking came through the organized church, unchallenged by those pesky prophets who were wandering in and around the city gates. Today’s church finds psychiatry a convenient way of making sure that its dogma goes unchallenged.

Mr. Fernando is a Singaporean man who has been caring for his “schizophrenic” wife for over thirty years. He writes in his book, “I am troubled that there is no cure for schizophrenia. But I’m more troubled by the attitude of people towards those with mental illness – avoiding them and stigmatising them – when we should be helping them.”

Since Mr. Fernando reads his Bible, how does he reconcile his modern belief about schizophrenia with the many instances in the Bible where Jesus cured the mentally ill, a.k.a. the demon-possessed? How is it that the Church believes that this is no longer possible? Why isn’t the Church actively more engaged in practicing the faith healings that Jesus told us were within our power?

As a full-time author, Mr Fernando gives talks about being a caregiver to patients, teaching them how to identify symptoms of schizophrenia as well as providing tips, always using his experiences with his wife to illustrate his points. His talks are often encouraging, and he reminds his audience not to lose hope because mental illness can be overcome with regular medication, counselling and strong emotional support from loved ones.

It’s strange that church leaders and parishioners can recite the symptoms of something they call “schizophrenia” while, at the same time, being surrounded in church on any given Sunday by high strung people (including themselves) who speak in tongues, get swept away by religious ecstasy, feel the devil is out to get them, recount Biblical persecution stories and subscribe to the Holy Trinity.

I am always struck by how “mentally ill” bordering on schizophrenia church-goers are (and I’m a church-goer), but its leaders still believe that somehow there exists something called serious mental illness that needs support provided by psychiatry, not the Church.

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(Raymond Anthony Fernando’s book “Loving A Schizophrenic” is on sale at the Catholic News Book and Media, at the Catholic Archdiocesan Education Centre, 2 Highland Road, #01-02. It is also available for online purchase at http://www.rankbooks.com/. It is priced at $15.)

Wanting to move on

Ian had lunch yesterday with a friend of ours who has known us since the time Chris had his breakdown. The conversation turned to Chris at one point and our friend enquired in a plaintive voice if Ian and I had joined a “support group for schizophrenics.” Ian felt indignant. “Well, no,” he retorted somewhat testily, “we no longer even think of Chris as “schizophrenic” and we don’t feel that we need support.” Our friend sees Chris regularly, and while it is true that Chris is not employed or actively involved in taking courses, our friend can surely can see that Chris is more or less back to “normal.”

But our friend doesn’t see that. He sees the label for the so-called disease, which says that Chris is a “schizophrenic.” He’s not alone. There are certain people with whom we hate to discuss Chris because we get that sorrowful look and tone of voice from them that implies that Chris is his label. When we express our confidence in Chris that it’s just a matter of time before he is ready to go back to university or take on challenging work, other people don’t know how to respond. They somehow “know” that this conviction of ours can’t be. We get a tone of voice that implies skepticism.

Ian said something else interesting, interesting because he doesn’t share my anti-medication bias. He said he wished that the doctors gave us the right message from the beginning about Chris, that he just needed time, probably about ten years, to build his personality. Instead, the doctors gave us the wrong message from the beginning, that Chris had this thing called schizophrenia, that was a chronic brain disease and that life as we and Chris knew it was permanently over. Well, life isn’t over for us. In fact, we’re enjoying it a lot, and we really appreciate the gifts that Chris brings to us on a daily basis. We think our three sons are just super young men and we enjoy them all. In many ways, life couldn’t be better.

How to think like a Valley Girl

A Waunakee, Wisconsin high school dance team has created an uproar over its “psych ward” routine. It involves the anti-stigma crowd, the comments from the gym teacher  (whose intellectual muscle if she ever had one has slipped below her neck), and then there is the rather low IQ sports writer who accuses the anti-stigma people of being overly politically correct. This is the kind of story that is tailor made for Fox News, USA Today and . . . blogs.

I can’t get too fussed since I deliberately avoid just about any event that would involve cheerleaders, stock car racing or the National Hockey League, knowing that I may be frequently wincing at what I see and hear. What I find most amusing are the comments from the coach and from columnist Rick Chandler. It’s like, hey, how smart are they?

Erin Cotter, the team’s head coach, says she is taken aback by how upset people are about the routine. “I don’t understand where they are coming from,” she says. Hip-hop is all about being “bold,” she says. Last year, a competing team dressed in orange jumpsuits pretended they were prisoners, she says. “The whole point is to get people pumped up and energized. Our intent had nothing to do with mental illness. Our total intent was just a hip-hop dance and the songs and the words that were popular. The thought never crossed my mind or the school’s or the parents’ or the kids’ that it was about mental illness.”

 
Here’s the picture. I rest my case. It’s like, hello, it never occurred to her that this dance routine had anything to do with mental illness? It’s totally awesome the way these girls combine making a fashion statement with lurching like they’re on heavy duty antipychotics. One photo observant reader wondered if psych patients always bleed from their eyes.
 
The columnist dude, Rick Chandler, thinks that “teaching our children to back down under pressure is not cool.”

The building of a personality

I came across this blog written by an unnamed writer now in his sixties who, from what I have read so far, reminds me very much of Harry Haller, the protagonist of Steppenwolf. In his introductory post he writes about the process of renewal. Below is just an extract from a blog post. You can find out more at Sky Blue Cure.

From Death to Life: A Story of Personality Reconstruction
Is it still I, who there past all recognition burn?
Memories I do not seize and bring inside.
O life! O living! O to be outside!
And I in flames. And no one here who knows me.

Rainer Maria Rilke


This story has been written primarily for a few close friends although all readers are welcome.

Given the nature of the stigma associated with emotional illness, the pharmaceutical bias of the medical establishment and the vast misunderstanding of emotional functions in popular culture it is unlikely that this message would be accepted or even be of interest to most people.

At least the record is made, for my satisfaction , that someone like myself did exist and did transform in an age where this process is relatively unsought and unknown.

I was sick and then I was cured. I was emotionally ill until I was thirty. I was made ill by the psychological abuses of both my family and the larger social world. At the age of thirty my personality changed, I was totally reconstructed. I changed it with help and guidance. The difference in my two lives, my two personalities, before and after, is virtually the difference of life and death. Prior to my change, I was barely emotionally alive yet I did experience states of extreme fear, depression and anxiety. I was able to think and function to some extent but mostly lived either in a state of deadness or extreme emotional agitation. I could not emotionally react in a natural way and so had to avoid most situations that caused emotion. I could not direct my actions or my life to any cause or interaction with others. I could not progress or grow in almost any way. My current personality is as fully emotionally alive with a full emotional range and I have no social fears or anxieties.

Previously, I was emotionally repressed. I was as if dead, yet I suffered greatly as if in an unending nightmare which I could not understand. My conception of myself now is that I somehow died or was murdered as a small child and lived on drifting as a frightened ghost, a dead person yet alive and dreaming a nightmare, a somnambulist, a recording machine that recorded events but could not participate in them. From emotional repression I deteriorated over the years into a fractured personality. I have no sense of “break” from my two personalities, I have always felt a continual flow of self, yet my current self is my full self and I regard my previous self as my dead self. I remember my past before age 30, It was “I” but then again it was “Not-I”. I live now with a strange dichotomy of memories and feelings about who I am. This also makes me a person who is able to draw on opposite types of behaviour to use at I will.

After I changed, over time I realized that I was not the same person. At first, I had thought I was simply “more” than I was previously but I came to realize that I was not only “more” but I was “different”. If I had met my previous personality, I wouldn’t have liked much about him and I don’t suppose he did like himself much either. That’s as it should be.

Our unnamed writer echos Hermann Hesse, who wrote “Not everyone is allotted the chance to become a personality; most remain types, and never experience the rigor of becoming an individual. But those who do so inevitably discover that these struggles bring them into conflict with the normal life of average people and the traditional values and bourgeois conventions that they uphold.”

No more misery memoirs

The playwright David Lindsay-Abaire is quoted in today’s New York Times:  “I remembered something Marsha Norman said at Juilliard,” he said. “She said, if you want to write a good play, write about the thing that frightens you the most.”

As most of you know, I’m writing a memoir about Chris’s and my journey through schizophrenia. I didn’t set out to be a writer, this is my one literary bolt of inspiration, so sequels are not in the offing and I don’t expect to be awarded a Pulitzer prize for great writing. My added value to this generally “misery memoir*” categorized genre is that I approach schizophrenia from an optimistic viewpoint; I expect full recovery for Chris (and me!) and I expect it to come from non-drug interventions. There is an exciting world of help that more people should know about that runs counter to the accepted wisdom today that schizophrenia is a brain disease that can best be treated by pharmaceuticals. “Schizophrenia” no longer frightens me because I learned how to understand its message, however, my initial fright provided the impetus to try to write a good memoir.

Holistic schizophrenia needs a lot more help than I can provide. The competition is almost all on the side of memoirists (see Henry’s Demons* below) who promote the the idea that one day science will finally track down the cause of this “scourge.” Our side needs to be promoted through our own memoirs showing that there is a better way to understanding. There are too many memoirists like Kay Redfield Jamison who set out to convince people that so-called mental illnesses are depressing, lifelong and purely biochemical in origin. We need more memoirists like Jane Alexander, author of Possessing Me: A Memoir of Healing. Now there’s a positive message!

W.H. Auden had this to say about memoir writing: “Our sufferings and weaknesses, in so far as they are personal, are of no literary interest whatsoever. They are only interesting in so far as we can see them as typical of the human condition.”

Many of you are probably already thinking about writing this kind of reflection. If you aren’t, please consider doing so now. The public’s s understanding of how to treat mental illness usually comes from a book or a movie that they read or watched. Together we can challenge the public view of schizophrenia.

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*Henry’s Demons: Living with Schizophrenia, a Father and Son’s Story, by Patrick Cockburn and Henry Cockburn (Scribner, Feb. 1, 2011)

Editorial reviews

From Publishers Weekly

This sensitive story of a family’s battle with schizophrenia looks at the ignorance and stigma that often accompany any mention of mental illness. When Cockburn, a foreign correspondent for the Independent on assignment in Afghanistan, learns his 20-year-old son, Henry, has been institutionalized after trying to drown himself, he tries to understand why his son has had a mental breakdown. The Cockburns, a tightly knit family, are severely tested by the pressures of a loved one undone by his mind and locked away for seven years in a mental hospital. Told in alternate views, both father and son write candidly of the illness, medications, and numerous hospitalizations, along with harrowing descriptions of visions and voices. This straightforward, unsentimental book, is a bold plea for more research and cutting-edge therapies to combat mental illness. (Feb.)
(c) Copyright PWxyz, LLC. All rights reserved.

From Booklist

What to do when the bright and gregarious child you have loved and nurtured suddenly takes to stripping naked and defecating in a neighbor’s yard? Or worse, what if he courts death via hypothermia by swimming in the frigid waters of a nearby river? What could possibly be worse? If that same young man adamantly denies that he is ill and stubbornly refuses all medication that might help him. As a parent you are helpless when your son repeatedly escapes the confinement necessary to prevent him from harming himself. If Patrick Cockburn’s wrenching account of son Henry’s illness is not affective enough, Henry’s guileless divulgence of his personal reality drives home the unrelenting anguish of the families of schizophrenics. More poignant still are the journal excerpts of Henry’s mother, whose nerves are palpably raw from being in the trenches with her son’s illness and a medical community unable to help him. The family Cockburn’s unique take—by allowing Henry a voice in this book—offers valuable insights into mental illness. –Donna Chavez