Monday, July 14, 2014

Anderson Cooper Using Schizophrenia Hearing Voices Simulator

Watching the video of CNN's Anderson Cooper trying a schizophrenia simulator is a startling and dismaying look into how difficult it can be to function with auditory hallucinations. But many don't experience hallucinations. What would a delusions simulator look like?

I imagine it would have to be visual -- plagued by images instead of sounds. There's really no other way to call to mind the obsessive, persecutory concerns that persist in sz.

I once read a book by Dave Eggers called A Heartbreaking Work of Staggering Genius. In it he used maybe the best analogy I ever heard for how the mind works. He wrote that it's like a library containing file cabinets brimming with your life's history. Every little memory, every episode is documented. And it's filled with little, insistent librarians -- which represent memory itself. The librarians are always calling something to mind, reminding you of something, however old, seemingly irrelevant, painful or unwanted the memory might be.

What's the SZ library look like. Are the librarians constantly misfiling information into irrelevant batches, allowing the mind to draw faulty conclusions and associations? Librarians bringing up stressful or provocative materials no matter what's at hand? Or is it just an open-air space with papers blowing hither and thither? Maybe there's no librarian at all.

Wednesday, July 9, 2014

Coping Phase 3: Who Do You Trust?

The follow up to Coping Phase One and Coping Phase Two.

As time passes, maybe with a relapse thrown in there, it can start to seem like there isn't anyone you can trust. Doctors say this, that and the other, but not everything works for everyone.

You said the last drug was the right one. You said people did well on this combo. You said we'd start seeing an improvement in two weeks.

And so the questioning begins. Whether you're just talking about changing routines and medication or therapy as well, you start to wonder if anyone has a handle on schizophrenia.

Some doctors load you up with facts, but they might not pay off. You're stuck wondering: If this, why not that?

Other doctors are cocksure. They've seen it all before. You'll probably be happy to put all your eggs in their basket, but when things don't turn out like they planned you're even more disappointed than before. Who is an expert? Where do you turn?

Lastly, you might start to wonder, is the diagnosis even right? Doctors say Pat's schizophrenia is refractive, meaning it hasn't responded to any medication. He always has breakthrough symptoms that include paranoia and sometimes delusions. They tend to crop up in a cycle along with the seasons. May and December are the danger zones, where we all watch carefully to see if he's more agitated than usual, getting less sleep, signs that he may be slipping into active psychosis.

The question train leads us, however, down a troubled path: Well maybe "refractive" is just a way of excusing the fact that doctors can't find the right medication. Maybe there is no medication that will work for him or maybe the doctors are incompetent. Either way, that could mean the diagnosis is just plain wrong.

Looking back at the last nine years, I can tell you these questions are normal. And as I round the decade without seeing any vast improvement in my brother, I'm learning to get comfortable with the unknown, with all the possibilities that could crop up.

I have to give him and his treatment team the space they need to figure out what's right for Pat.

That rushing fear to get all the answers, to set everything straight and follow a treatment plan to a T - that's not really helpful. Flexibility is the best thing I can learn and bring to the table. Trust in that. Trust in yourself and the dedication you have for your loved one.