The Carnegie descendants

An interesting NY Times piece today about the descendants of Thomas Carnegie, brother to Andrew.

Believing in recovery

Many of us don't believe in recovery. We think we do, but we are often unwilling to take the necessary steps. While I am admittedly hard on doctors, doctors can only get away with what they do because they have you as a patient. You may be of the scientific persuasion, a person who reassures him/herself with facts, double-blind studies, and the latest findings in leading scientific journals. You and your doctor will no doubt be very sympatico. When your doctor tells you there is no hope, you will believe him because it fits with the kind of person you are. You will continue to take your meds and be a good patient. You are most likely very conversant with what is written in the product literature.

The technical language of psychosis is so dreary it is hard to muster any hope. Prodromal symptoms, extrapyramidal symptoms - this vocabulary is how schizophrenia is introduced to new patients and their worried relatives. A big downer. When Chris was first hospitalized five years ago, the social worker told me brightly that why, in five to 10 years time, exciting changes were foreseen. I believe she was alluding to a miracle cure. The problem was, Chris didn't have five to 10 years to wait for something that had eluded medical science for the past 100 years. He needed to start getting better immediately.

It is now over five years for Chris and I have yet to see that miracle cure, although I hear there is one underway. Nor do I expect one. It has taken me at least four years to realize that schizophrenia isn't all about the biochemistry. Your doctor believes it's all about getting the biochemistry right, though. In my experience, it's not just the doctor prescribing medications who talks almost exclusively biochemistry, it may also be the doctor who is trained in alternative, complementary medicine. An MD after the name still makes doctors think mainly in terms of biochemistry.

Like Chris's doctor who conceded initially that vitamins may not help, but they probably don't hurt, this is how most medical doctors view the psycho/spiritual side of psychosis. They give it a place, but not a big one. Then they get right back to focusing on the biochemistry. The psychiatrists who specialize in certain therapies, such as Jungian, Freudian, Adlerian, Gestalt, etc. have a much broader perspective on the mind's power to heal itself. These kinds of doctors are a luxury for many. We have also been told for the past several decades that "talk therapy" is of little help for schizophrenia.

If you are going to reach beyond a purely disease approach, become open minded to the rich tapestry of life, to writers, poets and people who think differently than your doctor does about the human condition.

Well meaning people

The other day a friend said to me, "Rossa, I always tell people the truth and it may not always be what they want to hear, but you know, of course, that Chris will always have problems." She went on to say that she does know one lady in her sixties who is managing very well on her medications and even was working. The point my friend wanted to put across was that Chris will have fewer problems if I accept the fact that he needs to be on medications.

My friend's comment speaks volumes. She knows that Chris is currently in the hospital and had been off medications for a year. She is well intentioned, as are all the other people who have come to me recently to say that Chris needs to be on medications. The problem is, to paraphrase Professor Harold Hill, "they don't know the territory". They have heard that medications are needed for people with schizophrenia. They haven't heard or experienced the other side of the debate. They don't even know there is a debate going on.

I didn't try to argue with my friend. I know that arguing the point would make me look like I am a mother in denial. I will just continue on my chosen path.

Yes, Chris is in the hospital. Going back into the hospital automatically means medications as the price of admission. I'm not happy about that part. However, I do not view his latest hospitalization as a failure of our holistic interventions. Nor do I see the re-emergence of his problems stemming from being off the medications. This time around the hospital is getting a better product in my son. He is communicative whereas he was almost mute the first time he was hospitalized. He is rational for the most part. He is able to express anger and pain. He is no longer overweight.

The doctors and nurses are seeing a more functional person this time around. I attribute this to the therapies undertaken over the past five years and caring enough about Chris to monitor his daily regime of vitamins and activities.

When well meaning people come to me, I thank them but just sigh and think "they don't know the territory".

Who am I? What am I here for? Why you might be interested in what I have to say.

"Who am I and what am I here for" are the fundamental questions of our existence on this planet.

I am Rossa Forbes, a pseudonym for me. I became a new me, a wiser and more focused me, when my oldest son was diagnosed as having schizophrenia. That was six years ago when "Chris" was 19. His diagnosis forced me think about many things in a different way.

My blog is for people who expect more out of recovery than what they are currently achieving.

I was naive when I started on this journey. Over time I became very critical of the medical treatment Chris was receiving when I realized he wasn't getting better, despite the huge amounts of money being spent. I expected "better". I expected "well". Doctors instead spoke about "recovery". Recovery is such a vague concept. It seems to be associated with quality of life, another term that I abhor when it comes to schizophrenia. Who wants to be spoken of in terms of "quality of life" when you are young and your whole life is ahead of you?

BS (before schizophrenia) I thought life was pretty good. I still do, but it is much more meaningful. Schizophrenia is not like other illnesses. I do not really consider it an illness, so if you are looking for advice on medications and how to deal with schizophrenia as a brain disease, this blog is not for you. I do consider schizophrenia a "problem". Something isn't working well for the individual and it is certainly a huge problem for the family members. Problems can be solved, however. They take time and effort. Nobody said this was easy. A brain disease, on the other hand, sounds final. And, of course, expensive medications are prescribed for this brain disease. These medications also have rather serious side effects.

While I hesitate to even use the term "schizophrenia" in this blog, it is useful shorthand for a collection of characteristics related to someone who is having difficulties with living.

The purpose of my blog is to do the following and more:

1. Introduce you to holistic therapies that my son underwent (I tried most of them, too.)

2. Explain why a holistic approach is better than a medication only approach. Holistic allows that low doses of medication can be useful and often necessary, but should not be considered a long term strategy.

3. Stimulate a positive and even humorous perspective about the condition

4. Encourage you to think that the expected outcome of this condition is to achieve total health

5. Demonstrate that writers, artists, poets often have a better understanding of schizophrenia than your doctor does

6. Establish a platform for the book that I am writing (feedback is most appreciated!)