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.

How To Stop A Relapse Before It Starts

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Baby I have been here before
I know this room, I’ve walked this floor
I used to live alone before I knew you.
I’ve seen your flag on the marble arch
Love is not a victory march
It’s a cold and it’s a broken Hallelujah…

– Leonard Cohen

Relapsing in brain illness is the pits.  The prodrome, as it starts creeping into our awareness, is worse than knowing we are about to walk into a spider web with the spider and his dinner still in it.  It’s so horrible that even before the prodrome hits, imagining a relapse can trigger foreboding and anticipatory anxiety.

What will I do if I…?  

Dear God no…

Recently we did a brief series on ECT and discussed how ECT can improve brain health, signal neurogenesis and trigger healing.  This brought many of us to wonder about what causes brain damage.  It became apparent that many of us had forgotten that brain illness, in fact, damages the brain.  We still have a hard time, despite all our progressive activism and awareness, believing to the core that the brain is human, that emotions and behaviors come from the brain and that a diseased brain is what generates disease symptoms as seen in emotions and behaviors.  We still have a hard time believing that the brain responds to medication, much like the liver does.

What?!  Depression causes brain damage?

What?  

Now compound that with the spider’s cousin, Medication-For-Life, and you’ll see us doing a funny walk-hop-dance in the dark to avoid what we wish we weren’t getting into.

The wonderful bit about all this is that staying on medications, even for life, is the best way to dodge the worst of it.  Sure, even with medications, as prescribed, compliant and all that fluffy five-star behavior, we still relapse.  “Depression should be considered as a continuous rather than an episodic process,” as stated so well by French biomedical expert, Vidailhet P.   But, (this is really good news,) when we relapse, we do not drop as fast, we do not fall as low and we do not hit as hard when medication compliant.  Staying on medication is prophylactic against those miseries.  Staying on medication is protective against progressive brain disease and it’s deteriorating effects.  Staying on medication is friendly.

…Hallelujah, Hallelujah
Hallelujah, Hallelujah

Leonard Cohen

Question:  What have you noticed that staying on your medication has done for you?  How do you manage to stay on it even when you don’t want to?  

When you’ve come off of it and relapsed, how was it different from when you relapsed while still maintaining your medication therapies?  Please tell us your story.

Self-Care Tip – Stay on your medication.

Mental Illness Relapses When Medications Are Stopped

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Self-Care Tip #246 – Collaborate with your physician to change your medications.

It keeps happening.  People are stopping their medications and then getting more sick.  Recently it was Olivia.  I can always tell when she’s off medications – she personalizes things way more and she acts like a victim to many many random things.  She is irritable.

Olivia, did you stop your meds?

Olivia on medication was not a super easy-going person but she dropped much of the edge, her thoughts were clearer and she was able to see other people around her.  Today Olivia felt like her bullets were in place and about to fire.  She answered my question obliquely.

There are sooo many reasons I am better without those in me!   I used to not be able to feel God.  When I prayed, I didn’t sense His Spirit.  Besides, I’m doing fine.  There’s nothing wrong with me.  I’m happy!

The biggest bummer about getting into the scene after the medications were stopped verses before, when stopping them was just a consideration – is that the patient doesn’t see themselves clearly.  They don’t see how bad it’s gotten.  They can’t be objective largely because they are using the same organ that is ill to describe itself.  If I could have discussed it with her before she stopped her medication, she would have been in a healthier state and more able to weigh her risks and benefits of medication verses no medication.

Sometimes we do agree together, patient and physician, to stop medications and sometimes we don’t.  Doing it together is the key though.

Questions:  How do you work with someone who wants to come off their medication?  How about yourself?  Has this ever been a problem for you and if so, how did you deal with it?  Please tell me your story.

Number One Reason For Relapse In Mental Illness

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Self-Care Tip #230 – Remember why you feel the way you do.

Olive was doing well.

How are you doing Olive?

Oh fine.  Just fine,

Olive would say.  And she was.  A sense of rightness filled her when she thought about it.  Right with the world, her garden, her work and even her kids.  She wondered that there had ever been a time when she hadn’t been.

It was almost easy for Olive to forget about why she was better.  Almost, except for her probably thirty seconds of opening the lid, dumping the contents into her hand, tossing them, all of them into her mouth.  One swallow with water and it was over.  Thirty seconds she thought.  I’m doing it for my kids.

Then came the best reason she ever needed.  And despite knowing that she had done this before and had relapsed, something about the rightness of the reason made her feel like the relapse wouldn’t be allowed.  The rightness would keep it away.  After all, she was stopping her medication for her kids.  If she didn’t have medical insurance than she would be a huge burden financially and she would die before doing that to her children.

So quietly Olive stopped.

By stopping medication, many of us have this sense of eliminating the reason we started the medication in the first place.  Take medication.  Disease continues.  Stop medication.  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’re gone.  Turn back.  You reappear.  Turn.  And just like that, you’ve been eliminated.  Even now, remembering it delights me.

Not so cute however, is the number one reason for relapse in mental illness – stopping medication.  For Olive, she turned her head, and hoped her recurrent Major Depressive Disorder would not be there when she turned back around.

How are you Olive?

(Sigh.)  Fine.  Just Fine.  (Sigh.)

But Olive wasn’t.  Even though she knew she had been better on her medications, she couldn’t see any more, how much better.  Her face tightened up, her thoughts wandered and she exploded more.  Self-loathing of course followed and she felt like her suffering was unique to her.  No-one understood her, especially her ungrateful children.  She was doing this for them, just like everything she did through her whole unappreciated life.  This was all wrong.

Is this why I worked all those years and raised them?!

Readers, you may not agree with the crystal clear logic that emboldened Olive’s heroic stopping of her medications, but it’s not the only one out there.  This being the number one reason for relapse implies that there are many that seem to make really good sense.  So forget about they specific “why” of why Olive turned, and just know that many of us do.  Many.

Question:  What has helped you stay on your medication when it seemed to make sense not to?  What do you think about people who choose to stay on medications for life?  Please tell me your story.