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 firstname.lastname@example.org
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!