Tower-of-Babel Syndrome

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From time to time, I hear complaints that someone’s brain illness got better with medications and/or ECT, but just came back when they stopped. This almost always happens when a patient never transitioned to maintenance ECT and/or medication therapy.

I dub this, the Tower-of-Babel Syndrome.  We all suffer from it at some point in life, trying to be like God.  Or maybe a lesser god?  During this Tower-of-Babel Syndrome, after we have paid the price, after we have complied with the many hard tasks, after we have built ourselves up into something glorious, we are cured from illness. Right? Once we stop perceiving it, illness that is, we are closer to God, more like Him/Her, perhaps more perfect, when we feel better and do not need medical care. Little gusts of wind are all it takes to fill our wings and off we go, living life free from disease laden earth.

But this is a mistaken expression of freedom.

The number one reason for relapse is…? You remember.  Treatment noncompliance. Is relapse most often due to life stressors? There are so many. No. All those reasons for why we think we feel what we feel and do what we do, all those forces acting on us from the outside in, they are not the reasons we relapse most often.

There is something like a super-bug growing amongst us who engage in treatment on and off. We do it four or five months out of seven. We skip here and there and do not “over-react” if we do. “They don’t control me, after-all.” We apperceive the situation. We think we, by not being consistent with medical treatment, demonstrate our freedom. We are free when we engage in medical treatment or when we do not. We are free because we are human.

The super-bug in brain illness is a progression of disease process heightened and sharpened by treatment noncompliance. A growing resistance to treatment and an acceleration of our falls, how long it takes for us to drop into a relapse and how hard and far we fall.

Let us work together to take away barriers to consistent treatment.  You may laugh when you hear about the Tower of Babel.  You can laugh.  A bonus.

The Tower-of-Babel Syndrome is familiar to those of us who stop any variety of medical treatments on our own, excluding our treatment team members, (such as our physician, Wink! Wink!) in our decision to end treatment.

By stopping medical treatment, many of us have this sense of eliminating the reason we started in the first place.  Take treatment.  Disease continues.  Stop treatment.  We are superior.

When my son was about one year old, he learned that if he turned his head away from you, it was as good as denying your existence.  Turn.  You are gone.  Turn back.  You reappear.  Turn.  And just like that, you have been eliminated.  Even now, remembering it delights me.

Not so cute however, is disease relapse.  Maintenance ECT and/or medication therapy has a protective effect on the brain, prophylactic against further insult. It does not increase the distance between Me and God.  It does not increase a mislabeled dependency on treatment.  Maintenance therapy is part of our life journey.  It is part of our ability to be present with ourselves.  It is friendly.

Questions:  What keeps you in treatment?  Do you feel more diseased when taking maintenance therapy?  How do you manage that?  Please tell us your story.

Self-Care Tip:  Stay in maintenance therapy.

Getting Yourself Healthy Protects The Freedoms of Others

hey if you are too stinky we will ask you to l...

hey if you are too stinky we will ask you to leave not really sorry (Photo credit: stevendepolo)

Some of our most difficult cases are when we, the medical care-givers, think we know better how to take care of someone than we do take care of ourselves.

When a person maintains decision making capacity, but whose brain health disables them, if we care, we care.

Monty was one of these.  He was ill!  He was ill on so many tectonic plates, no one near him could keep their footing.  His quality of life wasn’t what he wanted.  He was disconnected from meaningful relationships.  He was suffering.  However, he couldn’t decide to engage in therapy.

Monty wanted to go “natural” but couldn’t name any natural therapies he’d be willing to try.  He didn’t want to continue suffering, but couldn’t accept medications “just yet.”  We went into one option after another, invested time together learning about brain illness and coming to terms with the biological involvement in where emotions and behaviors come from, and we did it many times.  Monty had a full informed consent.

Deciding not to treat or to treat is not easy for any of us.  Watching Monty step away into the foggy chaos of sex abuse and obsessive compulsive rituals was really hard.

We fight for our freedoms when we fight brain illness.  I suppose we fight for the freedoms of others as well, simply by taking care of our own selves.  Letting Monty choose even when his choices are affected by his illness is still his right and I defend him.  We all who take care of ourselves have more to offer Monty than if we didn’t, including a defense against the losses that brain disease brings – like processing information.

I’m not sure yet how to explain how taking care of ourselves influences the freedoms of those around us who are less inherently free by brain illness.  I suppose like anything good, freedom is contagious, a little bit of light in any room, Love being stronger than death and the Gettysburg address – this is along those lines.  It makes a difference to the Monty’s out there that we all take care of ourselves.

Self-Care Tip:  When frustrated that you can’t help others, get yourself healthy.  It’s contagious.

Question:  Have you been in the place where you thought you knew what was better for someone else then that person’s own choices?  How did you deal with that?  Please tell us your story.

Recommended Reading:

Why not skip medication And Go Natural?

Mistaken Expressions of Freedom and Medication Compliance