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.
I think I resent being thought of as thinking I’m God because I am not taking the amount of meds I used to take (or should take as maintenance) or even considering ECT. I took the meds, I did the talk therapy, I took the meds and took the meds and took…. And I gained weight that I cannot, no matter how hard I try, lose….enough weight to be considered morbidly obese…and I walked around in a drugged fog (or didn’t even walk…just sat). I have learned volumes from Friend To Yourself. It has taught me how to handle the many lows and many outside stresses. Sometimes I handle them well. Sometimes, not so much. But decide I’m God and quit taking meds? No. I quit because I want to be aware of my surroundings and because any more weight will surely shorten what’s left of my life and certainly make my joints much more painful than they already are with arthritis and fibromyalgia. God I am not. But talking with God has become more and more important every day, and that’s med and ECT enough for me, thank you.
Nice. Appropriately chastised and I hear u. Smiling.keep on.
Great insight. We always want to feel in control, and that’s okay. It can make us feel strong when we’re anything but. It’s all about freedom of choice, right? Even bad choices…
The strongest patients I come in contact with are the ones that continue to fight the good fight. And by continuing a plan of care that actually works for them…they are most certainly free…much more than ever before.
great addition. motive to feel strong is helpful to acknowledge. thank u so much leslie. keep on.
Sorry. Didn’t mean to chastise. Just sayin’… 🙂
“just”, she says 🙂
I consistently take my medications and see my medical people regularly. I am the only male on my dad’s side of the family that lived past 71. I attribute it to the mercy of God, His great immune system, and the many fine doctors, surgeons, specialists, hospitals and nurses and my very health conscious wife of 58 years. I am 80 and hoping to see 82 in Hawaii when we will celebrate our 60 wedding anniversary.
I think people that go on and off medications are making a mistake.
oh blessings and more to u, friend. i pray HA finds u in 2yr wiggling your toes in its sands. keep on
Some patients think they are closer to God in their unmedicated state but I don’t think any of them realize that they are children of God no matter how they present themselves. Some may “Play God” by Playing with their medicine but then later they wish they hadn’t because they will suffer somehow for doing it.
hey friend! we do suffer. Can’t wait for God to come and wipe it out. …btw, i know i’ve said it before, but i just want u to know that i love your blog and books you describe so well. have been influenced into buying a few myself… smile.
keep on.
Thanks so much, Sana, Friend. 🙂
Then you’ll be happy to learn of my second one coming out this summer called, Edmund Pickle Chin, a Donkey Rescue Story! 🙂
Awesummmm
Been there, done that. I’m staying on meds.
Since I like my medication, I will keep my medication, period. I mean it in my case.
been there done that. good stuff. keep on M
We should never stop our psych meds or change dosages esp depression, anxiety and other psych on our own. One often does this because one feels better now. Well silly, we feel better because we take the meds.
hey carl. speak!
Just to be understood, maybe, I need to respond to this one more time. I never played God by taking myself off my medications. I always spoke to my doctor before doing anything and followed his directions. I think taking ones’ self off of medications without referring to a doctor is dangerous and, frankly, stupid. I went off my medications – with the permission of a doctor!!!!! – when I reacted in some way to any medication I was given. I am not totally off medications. I take those that help with anxiety or ptsd and I take a great deal of pain medication when necessary – and as directed by a doctor!!!! I am not God. I never thought of myself as God. I have ALWAYS felt a close relationship to God and that relationship grows daily – particularly, for some reason, as I get older. (I’ll be 73 in April). My relationship to God has nothing to do with being on or not being on medications. And, as a matter of fact, the most difficulty I had feeling a connection to God was when I was on so much medication that I couldn’t think enough to have anything but a foggy relationship with anyone or anything. This posting has become a very personal thing for me and I’m sorry if it offended anyone. Perhaps coming back to Friend To Yourself was a mistake and that makes me sadder than anything else.
i’m so glad you spoke up about your reaction to this post! i’ve done a lot of reflection because you spoke out. How to say what i was trying to say w/o implying what you took away from it… tough. but u r spot on. keep on.
Just as ‘M’ stated, been there, done that. When I’ve decided to make my own adjustments to my meds, the eventual outcome wasn’t good. I was told by my doctor, many years ago, that I would need to take meds for the rest of my life. Having the delusion of invincibility, I didn’t really appreciate that 😉 Turns out she was right. As much as I hate the fact that I need daily meds to maintain my brain health, it’s far better than where I end up when I try to run my own version of treatment. Thank you for your continuous help, guidance, and partnership in this journey through my life, Dr. Q. You are truly the BEST!
been there, done that, huh :). me too i suppose. think we all have and do. just like with religion, i’m always ready and in need of reformation. keep on.
Reblogged this on edwinkimmd.
I wrote something here this morning and now it’s gone. Gotta love the internet. Did you know, Sana, that we can’t get to the comment section of your blog from yesterday? What Are You Up To goes to a page on your website that says “oops. This page can’t be found.” or something to that effect. I’ve tried since last night when you posted it.
What am I up to? I’m happy NOT to be up to my ears in snow and ice like I would be if I were home. I’m drawing until my eyes make me stop – which is way too often too soon. And I’m dealing with an amazing and surprising amount of pain but getting through with at least a smile most of the time. Enjoying a vacation with my husband of almost 48 years.
this was a conundrum. i don’t know why this post showed up and then disappeared. a first for everything i guess. i’m so glad u let me know because i then spun around and “reposted it”. sheez.
super to hear that you are drawing a lot! despite your pain. cheering. keep on.