Tuesday, April 22, 2014

The parents' role in a medical setting

This applies to so many parents who insist that their child has a mental illness. 

From The Healing Paradox, by Steven Goldsmith, MD. 

"My agreement of her parents' definition of it (anorexia nervosa) as an illness would have doomed treatment because only doctors' definitions of it are supposed to be able to cure illnesses, and parents are supposed to hover over an ill child. Such a definition (anorexia nervosa) would have reinforced this family's pathology and provided no leverage for change. Moreover, the label, like all conventional medical diagnoses, reflects Medicine's attempt to isolate the disease as a discrete, namable entity as a thing, rather than a pattern of dysfunction and a disturbance of relationships. By doing so, Medicine minimizes its chances of effectively altering those relationships and curing the dysfunction."

STEVEN GOLDSMITH received his MD at the Columbia College of Physicians & Surgeons. In the last forty years he has practiced medicine, psychiatry, psychotherapy, and homeopathy and has held faculty and staff positions at the Boston University, Tufts University, and New York University Schools of Medicine. He lives in Portland, Oregon, where he maintains a practice that emphasizes natural solutions for mental and physical illness.

Sunday, April 6, 2014

Leonard Cohen's 1970 European tour: "I want to play mental asylums"

Excerpt from Salon 
The politics, the police, and the frenzy exhausted Cohen. When the whole world was going mad, where did you go for shelter?
“I want to play mental asylums,” Cohen told Bob Johnston. The producer was no stranger to such requests; just two years earlier, Johnny Cash had approached him with the task of arranging a gig at Folsom Prison. But Cash had intended for his prison concert to be recorded and released as an album. Cohen seemed drawn to asylums for entirely personal reasons. He never explained them to Johnston or to the other members of his band. Four years later, speaking to a reporter, he recalled his request and suggested that the “experience of a lot of people in mental hospitals would especially qualify them to be a receptive audience for my work.”
In a sense, he continued, “when someone consents to go into a mental hospital or is committed he has already acknowledged a tremendous defeat. To put it another way, he has already made a choice. And it was my feeling that the elements to this choice, and the elements of this choice, and the elements of this defeat, corresponded with certain elements that produced my songs, and that there would be an empathy between the people who had this experience and the experience as documented in my songs.”
On August 28, the Army drove up to the Henderson Hospital, just south of London; “it was all talking therapy,” a former nurse at the hospital told Cohen biographer Sylvie Simmons, “no medication, no ‘zombies.’” Cohen was led up to the institution’s imposing and narrow tower, where his impromptu performance would take place. “Oh boy,” he told Johnston as they made their way in, “I hope they like ‘So Long, Marianne.’” Most of those in attendance were young, and many were Leonard Cohen fans. The band quickly set up, and Cohen took his place at the front of the makeshift stage, underneath one of the “tall, narrow windows that gave the room the feel of a chapel.” He looked at the audience. “There was a fellow I spoke to last night,” he said, “a doctor. I told him I was coming out here. He said, ‘They are a tough bunch of young nuts.’” There was some applause, and Cohen started playing “Bird on the Wire.” But then he stopped. “I feel like talking,” he said. “Someone warned me downstairs that all you do here is talk. That’s psychotic, it’s contagious.”
During 80 minutes, he played only 11 songs. The rest of the time, he told the audience about his relationship with Marianne and how it had dissipated, about how “You Know Who I Am” was written after taking 300 acid trips and “One of Us Cannot Be Wrong” was composed while coming down from amphetamine, about the Chelsea Hotel and life in New York and making love and sharing lovers and feeling inconsolably sad. Each time he finished a song or a speech, the audience applauded rapturously.
And then it was time to leave. “I really wanted to say that this is the audience that we’ve been looking for,” Cohen said as the Army was packing up to go. “I’ve never felt so good playing before people.”
Adapted from “A Broken Hallelujah: Rock n Roll, Redemption and the Life of Leonard Cohen” by Liel Leibovitz. Published by W.W. Norton and Company. Copyright 2014 by Liel Leibowitz. All rights reserved.
See 

Wednesday, February 5, 2014

Temporary shut down

This is my last blog post for the foreseeable future. I'm winding down the blog after nearly five years. It's time for me to let go, to move on, for Chris to move on so that he can challenge himself to fulfill his potential. Amongst other reasons for leaving, I really need to finish my book by writing that final chapter. The blog will remain, and I do respond to comments. If you wish to contact me, you can always e-mail me at recoverymodel@gmail.com

Have I broken any new ground in the last five years? Perhaps at the beginning, but not recently. Apart from writing from the perspective as a mother who is skeptical of standard treatment for schizophrenia and who has explored lots of non-traditional options, there are plenty of other people out there who are openly questioning the mainstream and are not hard to find. I have written countless recent comments in response to articles and have started many blog posts that I have abandoned and not posted. There just isn't much more that I can say that hasn't been said before. There is still lots to act upon, and I would love to see a more militant movement develop around civil rights and access to better, more humane treatment.

Before I go, I thought I would leave you with several thoughts about what I believe about schizophrenia and recovery and, as an aside, why I see merit in many sides of the political debates raging around mental health. Unfortunately, the debate is usually centered around the drugs. I think the no drugs at any cost position is as misguided as the drugs are necessary for life position.

This broad mindedness when it comes to seeing that even people with a viewpoint different than mine have a point, is part of the reason why I don't want to invest too heavily in the emotionally draining game of defending one viewpoint to the exclusion of others, when most of the time there is more than a kernel of truth in what the opposing side is saying. That being said, I am excited by how much the mental health community is beginning to question the effectiveness of the medications, to uplift the role of alternative therapies, to explore how important the family environment is to outcomes, etc.

My experience has taught me to have a foot in both camps when considering what causes schizophrenia. Is it a medical condition, or a psychospiritual one?  I like what blogger Monica Cassani wrote recently:

There is no reason to assume that the medical and the spiritual causes are mutually exclusive. As deeply holistic beings they are almost always intertwined. The spiritual experience often needing support and attention from a physical/medical stance as well. What is dangerous is to assume that psychiatrists actually know a damn thing about true medical causes when it comes to psychiatric distress. All sorts of things can contribute to the creation of psychosis in an individual…what it is not caused by is an imaginary chemical imbalance made popular by pharma, then medicated by said neurotoxic pharma. Such medications may dull the symptoms and even help people function in the short term but they poison and sicken the body in the long term and heal nothing at all. Psychotic symptoms can be, at least in part caused, by autoimmune disorders, celiac and other gluten intolerances, other food sensitivities, nutritional deficiencies, thyroid problems and the list goes on and on…it’s a very rare and unusual MD that looks for such causes or knows anything at all about how to treat them. Sacred illness may be both deeply physical/medical and spiritual both.

My experience has taught me not to underrate the effectiveness of medications in a crisis situation. They generally stop hallucinations, calm the person down, and very importantly, calm the relatives down. Some psychiatric survivors blame their relatives for insisting that they take meds, or for hospitalizing them. Fair enough, if that is your truth, but please don't dismiss the traumatic impact of a psychotic break on family members. Relatives cannot be a reliable source of help if they are worried and scared. They can become traumatized in the presence of psychosis and thus make recovery harder to achieve for themselves and for others. Their needs count, too. Patients blaming the parents or parents blaming the patient helps nobody. I also believe that if more empathic help is available before, during, and after a crisis, maybe medications wouldn't be needed, but that's a "maybe" and that scenario is still quite far in the future. They can be a quick fix in an emergency but should never have become enshrined as a life long panacea. And, yes, I agree with people who say that we need more rigorous scientific research and therefore better medications with fewer life threatening side effects. Yes, we need that, too, but we also should not presume that science based remedies are always better. Keep in mind that today's science if often tomorrow's discredited science.

Broadly speaking, medications are not as good as doctors and industry say they are, but they do work well enough for some people. If someone says the medication helps them, and they are not in a conflict of interest position with the pharmaceutical industry, then I'm willing to take their word for it.

My experience tells me how important it is to have family members understand and appreciate what their relative is going through and learn to work together as equal partners in recovery, starting from day 1. Although this sounds like a motherhood issue (seems everybody's at least on the surface is in favor of a collaborative approach), what has been missing up until quite recently is to approach recovery through the lens of STUDIED optimism and hope. (Understanding what hope is and how to sustain it can be taught and learned! That's a relatively recent and revolutionary development in mental health.) The routine prescribing of drugs to treat a "brain disease" does not demonstrate optimism if that is all that is being tried. Family members who insist that their relative lacks insight lack insight themselves. Their attitude destroys hope.  Everybody, relatives included, needs access to good patient centered education that takes the optimistic view that people can and do recover.

My experience has brought me full circle as to the nomenclature of psychiatric labels. I like to be able to write freely and not worry constantly that I have irritated someone else's view of what is correct and acceptable. I could review this post and substitute the word drugs for medications or put quotation marks around schizophrenia. I know the objections to the word medication and what quotation marks signal, and I get it and even subscribe to the viewpoint, but I don't want to get bogged down in semantics when there are bigger projects to tackle, like building communication bridges to others.

The best approach to overcoming schizophrenia is still the basket of eggs approach. Keep an open mind to trying different things. Unlike prescription medications most alternative approaches do no harm. Don't wait for double blind studies on alternatives. Alternative therapies work for some people and not for others, just like "real" medicine.  Find the therapies that work for you and ignore what others may say. But, on the other hand, don't get too caught up chasing alternatives treatments. There is nothing like paying attention to what your relative is saying, and respecting their right to say it. It's so important to be on their side.

Chris is now thirty, and I'm bowing out of his life as much as possible. He's generally up and running, he has friends, a girlfriend, and a social life that revolves around singing, amateur theater, and community volunteer work. He's still living at home because he doesn't yet have an income that would allow him to live elsewhere. His future is in his hands. This realization has taken years for him to come to grips with. Recently he has taken the first step on the way to a B.A. in Theater and Performance by enrolling in and sticking with a night course. Getting a job is also high on his wish list this year. He recently switched his medication back to Abilify (5 mg) from Respiridone (1 mg). I'm still looking for ways that may eventually allow him to live drug free. I haven't given up that hope.

I'll be back in time. Thanks for your support and encouragement and good luck with your journeys!

Monday, December 30, 2013

Random jumbled thoughts on cold remedies and antipsychotics

I've been cooped up at home for the past few days with a runny nose and chest that feels like it's winched to the point where a rib bone might break. A friend suggested that I take an over-the-counter remedy, which, at first, I chose not to do, since I rarely buy the non-prescription medication that doctors usually add on to their prescriptions, considering it mostly a waste of money. Either a prescription will do the trick, or it won't.

But, I reconsidered my friend's suggestion because I want to be in good shape for an unusually festive New Year's Eve, and was hoping against hope that the non-prescription stuff worked.

Here's the verdict. Since I am still coughing up a lung and the nose continues to run, and I had no sleep last night, it's hard to imagine that the non-prescription stuff works better than just letting nature take its course. I believe I am no further ahead cold-wise. As I lay on top of my bed and stared at the ceiling this afternoon while sneezing, coughing and blowing my nose, I began to think about - what else? - antipsychotics. If we compare psychosis to a long running and miserable cold, are we better off with the prescription than we would be with "over-the-counter remedies," e.g. the therapies, strategies, and attitudes that I discuss in my blog.

Putting aside the very real concerns about antipsychotic side effects, the best one can say about them is that they sedate in emergency situations. and can be useful in the very short run. "But antipsychotics are prescribed," some will say, "and these prescriptions work," and they might go on to say that everybody knows that there is no cure for the common cold. To which I would answer, and there is no "cure" as such for schizophrenia. Should we believe the pharmaceutical companies when they say that people are better off long term on prescription antipsychotics than they would be using non-pharmaceutical, non-prescription remedies?

Going through the thought processes that I did while lying in bed this afternoon, I can't help but reach the conclusion that the public has been suckered into a willingness to pay for non-prescription cold remedies and prescription antipsychotics.  The common cold is short and psychosis is long, but where is the proof that taking cold remedies or antipsychotics gets a person back on their feet any sooner than they would have if they had just taken normal precautions and sweated it out with e.g. chicken soup, a box of kleenex, psychotherapy or tender loving care from someone who believes that this, too, shall pass.

End of year thoughts

I haven't done a post for quite a while, and I'm not adding my two cents worth much on other blogs and sites for a number of reasons. I'm disengaging more and more from the intense and too often ugly online debates surrounding mental health issues.  I feel that after ten years of searching and questioning, I know what I know about about how to help my son work through "schizophrenia," and I no longer have the mental energy or the patience to convert others to my way of thinking. All I can offer are my own opinions based on my experience with Chris, and if I don't put quotation marks around the word schizophrenia, is the world going to end? Apparently for some people it will. I think an intense debate about the validity of schizophrenia and the drugs given to treat it is a welcome change from the past and is forcing needed change. I applaud the many good people willing to go to bat for those changes, but now I think it's time to stop focusing on the often minute differences of opinion between people we perceive as our enemies; there is a huge risk of marginalizing our growing base of support if we don't reign in the rhetoric. We are attacking people over words and I'm looking for more useful ways for me to contribute.  Even though I feel I have a message of hope about recovery that can be practiced to some degree of success by others, at the same time I feel that I'm not adding anything terribly new to the schizophrenia knowledge bank that I haven't said many times before.

Another reason I haven't posted much is that Chris is almost thirty, and really, it's time I bowed out of publicly recording the latest events as if I were the proud mother of a toddler or grade school student. Why I'll most likely continue blogging is because I like writing personal stories and I like reading personal stories because I think that they have the greatest reader interest and impact. But, by the time my" baby" reaches 30 next month, maybe it's time to NOT to document his every achievement and struggle.

We are living in narcissistic times. Anyone who blogs about or uploads Youtube videos of themselves or their close relatives (check out Holderness family Christmas video) can be accused of being narcissistic, but the trick is to manage to avoid the label by claiming a greater altruism (smiley face goes here). I'm blogging about Chris and me as a public service (and here) of hope to all those families who are struggling to see the light at the end of the tunnel. If it has to be the two of us to bring this message of hope, I'll risk being called a narcissist. There just aren't a lot of blogs right now written by relatives and targeted to families who are uncomfortable with the medical model of the "disease." It is through personal anecdotes from other mothers and fathers where many of us strengthen our hope. I would love to have some competition here in the blogosphere from the hope crowd to counteract all the crowded field of parental scare mongerers.

To end 2013 on an upbeat note, here is a summary of the good things that have happened to Chris and me on our journey this year.

Chris - got girlfriend, broke up with GF, seems to be back with GF, appeared in several theatrical choruses, attended an out of country course in musical theatre production, enrolled in a Monday night acting course, continues to be a member of several choirs, has gained greater ability to stand up for himself and voice his opinions  (Note: All of this did not happen overnight. It has taken several years for him to get to this level of confidence, and he and I both know that there is still work to be done.)

Me - learning that it is never to late to learn something new, enrolled in two online courses about how to practice recovery and sustain hope.

Happy New Year everyone. May 2014 bring you peace, good health, and hope.


Tuesday, December 3, 2013

A message of hope from Jen Maurer, Managing Director, Mother Bear; Families for Mental Health


Rossa's note: I'm on the Advisory Group of Mother Bear and have taken two of its online courses  on practicing recovery and sustaining hope. I am so grateful to Mother Bear for filling a huge gap in the recovery movement -- helping families to understand and appreciate the human side of psychosis and mental distress. Mother Bear's online courses and Help Hotline, is a godsend. A few months ago my son, Chris, called the hotline when he needed an empathic someone to help him work through his emotional state. He keeps the SOS phone number handy and knows he can be listened to with empathy when he calls.

I've made my donation to keeping the Hope Light brighter and I urge you to consider donating, too. 



Jen Maurer


Dear friends,


As many of you know, for the past two years I have been working for a labor of love-literally and figuratively-as Managing Director of a new nonprofit, Mother Bear: Families for Mental Health ( http://www.facebook.com/l/9AQHkteVYAQFyM06tzKWpwmutkPIFhY0PAcBmW1oNCX2G9Q/www.motherbearcan.org), which is dedicated to helping families heal from intense emotional distress.

The traditional medical system, friends and other family members have often given up all hope for these families. Not surprisingly, families come to us with barely a flicker of hope left that their loved one will ever recover or that they will recover from the exhaustion and worry that comes from caring for someone who is in chronic distress.

That is what is heartbreaking about my work. Seeing how deeply families are struggling without support.

What is heartwarming is being able to share with families that with support and education, we can help them reduce relapse rates by as much as 75%. Fact. Decades of research to prove it.

Recovery from even severe emotional challenges is not only possible, it should be EXPECTED… with the right support, of which there is precious little.

That’s where we come in. Mother Bear is, quite literally, a light in the darkness for families. 

I am asking you to consider helping us burn our Hope Light brighter by making a contribution of any kind to Mother Bear today (Dec. 3rd), otherwise known as #GivingTuesday.

#GivingTuesday is a movement that encourages people to take collaborative action and harnesses the power of social media to create an international Day of Giving that thrives on the spirit of generosity and amplifies small acts of kindness in the service of changing our world for the better.

Here are just a few of the ways you can help Mother Bear transform lives:

* “Like” us on Facebook (https://www.facebook.com/MotherBearCAN) to spread the word that recovery is possible and to share our healing resources. We are ALL touched by mental health challenges (yes, 1 in 4 of us at any given time!). You may not know whose life you are helping by sharing. Rest assured, you are.

*Post our #GivingTuesday link on your Timeline and ask your friends and networks to do the same.
http://www.facebook.com/l/dAQFbdTBdAQHs9rNC-boU-5zOIYnx2tXMJm3IxatQPVpwzQ/givingtuesday.org/partner/mother-bear-families-for-mental-health/)

*Call our Hope Line at 1-855-I HOPE 4 U between midnight tonight throughtomorrow Dec. 3 (ending at 11:59 pm) and tell us what brings YOU hope. We’ll share it with our growing network of families on Facebook and Twitter! (I’ll be taking calls from 8 am to 3 pm tomorrow if you want to call and tell me your hope story personally!)

*Make a financial gift in any amount. If you contribute before 11:59 pm on Dec. 3, your gift (and your friends’) will be matched up to $150K! (That is a lot of HOPE!)
https://www.facebook.com/l/tAQGrQpNyAQGcNugK26MJo6I7u13EWjMs-gm8qDRbwkVYhQ/https%3A%2F%2Fwww.paypal.com%2Fcgi-bin%2Fwebscr%3Fcmd%3D_s-xclick%26hosted_button_id%3DQNGYF76RFWAHC)

Our special goal for this campaign is to secure the resources and staff necessary to increase our Hope Line hours in 2014 so more families can get support when they need it. We are currently the only toll-free Family Mental Health support line in the country.

I'm grateful for your friendship, your support and all the healing work you do in your own ways!

Wishing you all Hope- and Love-Filled, Healthy Holidays!

Jen

Wednesday, November 20, 2013

The job of hope

Hope is a job, not an amorphous entity that's always beyond our eager grasp. This reality was underscored recently when I enrolled in the Family Healing Together course, "Recovering our Hope."

I used to have a misconception about hope. I thought it was something that you went to church to pray to get, or something that people say when what they really mean is that hope is lost. "Well, there's always hope," people will say, and you know right then and there that the hope vessel is sunk.

No sir. Hope is a job that you get up every day for and go to work for. You learn how to have hope and once you do, you learn how to practice it, manage it, and adapt it to your own situation. Hold it, examine it, work with it.

What does it look like? Well, here's an example. Maybe you are worried that your son or daughter will never, never, ever, be able to put the pieces of his or her life together, because some part of his or her recent behavior has caused you to doubt. Maybe it's yet another missed appointment or not being able to get out of bed in the morning. Maybe it's a lack of concrete achievements or crippling self-doubt. Maybe it's all of that or something else.

So, you start by reframing - turning your own negative perceptions into something positive, because if you look closely, you will see that your relative is making choices and perhaps even moving forward in some crazy way that eludes you. You may realize that there is something you can offer them that helps them flourish. It comes from YOU.

You get down on your hands and knees and blow on the embers when the flicker of hope is dying. Maybe all it takes is a post-it note, or a rigorous mental exercise to focus on the positive and ignore the negatives. One thing I do is to keep returning to my read what my role models, people who also share a positive perspective, say. 

Here's one such positive perspective from the course, which is post-it note worthy:

"Suspend judgement and consider the possibility that even your most outlandish hopes can not only nourish you, but can also help you flourish."