Hope for a Cure? Or Not?

But we have to keep hoping for a cure, don't we?

I spent six months preparing a power point presentation on stages of recovery and fifty minutes delivering it.  My co-presenters and I described the misery of the Chemistry Experiment, and the hope offered by other interventions that harness the brain's capacity to heal itself.  Medicine is a piece of the answer, but just not inadequate to carry the whole load of healing.

But DNA operates even deeper in an organization than in an individual.  NAMI was born out of the medical model, when parents who had been wrongly accused of causing their children's illness pushed back and insisted on their innocence.  Mental illness is not caused by distant fathers and overprotective mothers.  Mental illness is a physical illness.

Yes it is.  Whether it arises from chemistry, wiring or structure, it is an illness in the brain, a physical organ, inside a body.

Well, it was a short jump from that insight to the search for a cure, a medical cure.  Because that is what medicine does, it cures physical illness, right?

So there was that question, the NAMI parent's quest for a cure, in response to all our elegant talk about Recovery, the NAMI peer's quest for a life worth living.  Forget Recovery. Don't we have to keep hoping for a cure?

Neuroscience of Meaningful Work

Fourteen years ago, I was offered a new job, Missioner for Ministry Development.  What's that?  Sometimes I said, I consult with organizations undergoing paradigm shift.  Other times I said, I do what Paul did.  Depended on the audience.

The details don't matter.  What does matter is that I got up every single morning rejoicing at what I felt privileged to do that day.  I considered it the job I was born to do.


Well, yes and no.  It combined my burning passion for advocacy, my deep appreciation of small congregations, and my abiding love for the highways and byways of Iowa, Beautiful Land, as the native inhabitants called it.

On the other hand, it gave me intense fourteen hour work days, conflict with long time friends, people across the state who piled their hopes, dreams and desperations on my back and the resistance of those who value certain aspects of an institution that others can no longer afford.  When we mixed all that with second generation antidepressants -- Keep trying, the doctors and my therapist said -- my bipolar II went into hyperdrive.  I was both madly productive and plain old mad.  It was beautiful.  It was ugly.  It didn't last.

Ellen Frank says that people with bipolar need to deal with grief for the lost healthy self.  It's one of the interpersonal issues that sabotage our adherence to the regimen required to maintain recovery.

Stages of Recovery - AKA Hope

It gets better.  It really does.

People who get tired of the Chemistry Experiment go off their meds.  Why?  Because the meds don't work.  Or they make us sick.  And the doctor doesn't hear us, because the doctor has one tool in his/her toolbox.  [Hint: It's not an ear.]  And he/she thinks that the solution to our problem is compliance, because there isn't time for listening and problem solving.

When you walk into a hammer store, they will try to sell you a hammer.  Fair enough.  If you are trying to rebuild the life that your illness took from you, chances are you will need a hammer.  Chances are you will need some other tools, as well.

The doctor doesn't have those other tools.  But they are out there.  And so is the map.

You are angry that the meds promised what they could not deliver.  Get over it.  Pull out the map.  Or the toolbox.  Mixed metaphor.  Whatever.  Get over it.  Get to work on your recovery.

The Recovery Map

Recovery - From What?

Recovery is the individual lived experience of moving through and then beyond the limitations imposed by the disorder, by the world around us, and even by the treatment itself.

Huh?

Okay, the deal is, unless you know where you are going, it's tough to get there.

Recovery Defined as Escape from the Symptom Silo

The docs know where they want to go.  They want to get rid of your symptoms.  Your illness is defined by a list of symptoms, found in the DSM and measured by survey instruments, and when you score in the normal range, then you have recovered.

Which is sort of like saying that if you don't have chest pain or shortness of breath, then you have recovered from heart disease.  Cardiologists don't think that way.  They want to know the condition of your heart, not just your symptoms.

Recovery Redefined

 The Medical Model Failed

We got sick.  Well, we were already sick.  We sat in the doctor's office, while the doctor quizzed us about our behavior, sorting out where we belonged in the DSM's symptom silo.

Next the doctor enrolled us in The Chemistry Experiment, prescribed the chemicals that were supposed to reduce those behaviors.  Not fix our brains, mind you.  Nobody has been testing whether these chemicals fix our brains, just whether they change our behaviors.

Recovery - The Medical Model Continued

Last week I began scavenging my upcoming Mental Illness Awareness Week presentation Recovery: Rewiring the Brain for a series of blog posts.  I left you in the middle of the Medical Model.  The graphic is on the left.  The narrative left off as the person with the broken brain was reading the patient information sheet, gulped at that list of side effects, remembered the doctor said she should weigh her costs and benefits, and then discovered that, according to the patient information sheet, the doctor had already done the weighing for her, and all she had to so was swallow the damn pill.

The Chemistry Experiment

The way it actually happened was this.  The sixth antidepressant my doctor wanted to try, she said, I get really good results with this medication.

So I wanted to know, remembering the results I got from her last brilliant idea, or rather, from the samples she had just received from the last sales rep, What kind of results will I get?

Recovery - The Medical Model

My Latest Obsession Begins

It was a talk intended for a general audience.  Well, what was assumed to be a general audience.  Not many doctors attend the monthly meeting of NAMI Johnson County.  But some people in the room know a lot more about the brain, what goes wrong, why, what can be done and what really works than the average viewer of those Zoloft ads on TV.  We have to.  We have come to understand that our lives depend on it.

So when the new director of the psychiatry department explained it all, some of us caught the nuances, and squirmed in our seats.

What Is Recovery?

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