I’m still here. Life goes on at its decidedly slower pace now that Chris is becoming a self. I haven’t blogged about him in a while, but recently I’ve been getting a flurry of e-mails from mothers seeking my advice about what to do about their own sons and daughters who’ve been recently diagnosed. I can’t just tell them to read my blog (all 912 posts) and expect them to get a handle of how to help their relative NOW. Years ago, an Internet pal told me that the best way to be influential is to write a book, so yes, that memoir I’ve been talking too much about and doing too little to finish, will take precedent over  regular blog posts once again, beginning this month.

I’ve been looking over some of my earlier posts and wince at how garbled some of them are. What was I possibly thinking when I wrote THAT? I wonder. A future project for me will be to clean up some of the language to make the posts more readable. (Ref. Weird Al Yancovic’s Word Crimes, “Saw your blog post. It was fantastic! (I’m being sarcastic.) Cause you write like a ‘spastic.”) . . . Better book some quality time with my book editor beginning this month.

Monica Cassani has started a weekly blog post about psychiatric drug withdrawal called It Gets Better. Seeing her post today reminded me that an important part of my blog is to also show people from my own experience with Chris, how it does get better. The person you thought you knew at eighteen or twenty, was probably not a personality, not a cohesive self. The person you see ten years later may the person he or she has been struggling to be all along, defining themselves in surprising ways. Given the right conditions, the caterpillar eventually becomes a butterfly, the seedling becomes a plant. The building up of a personality is for patient people. The results are gratifying.

Chris has been wonderfully productive recently. He’s taken two intensive French language courses and passed his language proficiency exam, which he will need to show to a potential employer. One step at a time. He just got back from a week’s technical training in sound and light for theater productions. Since he dropped out of university at age twenty, he has not wanted to/not been able to, take a course involving assignments and grades and he hesitated to venture far from the nest. What he has done recently should give anyone struggling under the diagnosis of schizophrenia, cause for hope. I don’t see “schizophrenia” anymore. Haven’t seen it for a long time. I prefer to talk in terms of spiritual crisis, maturation, and a finding one’s self.

Louise Gillett is a writer and creative talent behind the blog Schizophrenia at the School Gate. No, wait, she’s not just a writer, she’s an excellent writer and she’s got a wonderful way of explaining “schizophrenia” from the point of view of her older and wiser self. She writes about her insecurities in a way that I find delightful and insightful.  I got Louise’s permission to reprint her latest musings on social anxiety because I think what she’s saying can give parents hope in recovery.

Here’s just a snippet:

“About me.  Well, I am normal (we have established that.  Or haven’t we?!) but I was diagnosed with schizophrenia as a young person and that still affects my perception of myself.  I feel quite strongly that this label is wrong – not for me in particular, but for everyone who is afflicted with it.  Because anyone can suffer emotional distress for a variety of reasons (there always are reasons) and anyone can break down – and anyone can also recover.  But the label of schizophrenia doesn’t allow for recovery – even if, like me, you haven’t had to take medication for twelve years and you have no symptoms of mental ill-health (social anxiety is not schizophrenia). 

Which means that those people who do recover – which is more than you would think – stay very quiet about the fact that they were ever diagnosed.  Which gives the others with the same label – and people are still being given this label today – very little hope for their own futures. ” 

I went for a walk today with my youngest son Taylor around our neighborhood. We looked at the Nantucket style houses that were recently built and we agreed that, while charming, the blue shingles didn’t quite fit in with the rest of the houses on the street, and we mulled over  that was a good thing since they did liven the neighborhood up a bit.

Taylor spotted a kid buzzing around the street on a bike with a Justin Bieber style hair cut, and we both laughed and agreed how much we like Justin Bieber, hair poof and all, because he is clueless and fun (remember his happy mug shot -Yo, check it out – I can’t believe I’ve been arrested!), he acts like many other clueless twenty-year olds despite his fame and fortune, and he’s generally nice to people.

We eventually got around to to talking about benzos, celebrity deaths, doctors with boring jobs, and psychiatry. “It seems to me that all psychiatrists do is tell people what’s wrong with them,” said Taylor. “Why don’t they instead start describing people by what’s right with them?” Taylor began to warm up to his idea. “Take Justin Bieber. Why not call him “wonderfully expressive and enthusiastic (mug shot)? Or, a true risk taker who likes to test his own limits (excessive drunken speeding in a residential neighborhood). How about just plain “boyish”? (Egging of neighbor’s house.) This is a whole paradigm shift. I can’t even think of what we would call the Bieb’s diagnosis because we are so used to negatives.”

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.

Excerpt from Salon 

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!

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.

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.