It gets better: Living well while being sick

Black Butterfly

The IT GETS BETTER collection is intended to help those who are currently dealing with the iatrogenic (medically caused) injury from psych meds. The intention is folks who are still suffering really badly might know that we can heal. The series will continue weekly for some time. 

The series is also intended to help educate the masses to the realities that we face. Protracted psychiatric drug withdrawal syndrome is real. It’s also sometimes gravely disabling. It’s largely denied in the medical community. We are routinely blamed and told that the experience is psychiatric…this leads to more drugging and sometimes forced drugging with the very drugs that have harmed us. This must end.

We have no societal support when we are coming through this heinous process…many people have no familial or community support whatsoever. This is a dangerous reality for far too many people.

Please become educated. And please pass the information along in any way that makes sense, so that those of us struck with this can get the help we need and deserve.

Thank you.

The “It gets better” collection is a series of republished posts from when I was gravely ill from the psych drug withdrawal process and the following protracted psychiatric drug withdrawal syndrome. So many folks out there are now going through the heinous process of finding their way through psychiatric drug withdrawal syndrome and other iatrogenic injuries from psychiatric drugging. 

I will also tag new posts that speak to this healing process with the “IT GETS BETTER ” tag so that one can scroll through posts with that sort of information.

See also: Psychiatric Drug Withdrawal and Protracted Withdrawal Syndrome Round-Up

#4 of the It Gets Better Collection

I still practice the philosophy I wrote about in this piece. It’s been very helpful and continues to be helpful and I wrote it when I was still gravely ill in lucid moments really. I by no means am always so equanimous about all this, but practicing being with what is, surrendering to the moment of that which is, therefore, inescapable, for me, is truly the best way through this and also clearly brings healing. It’s a paradoxical stance really. In accepting what is completely without resistance there is a flow that allows for change and healing both. Some people didn’t like this post because I talk about embracing illness to the point of accepting it may always be. This is frightening to many people. Yet it was important for me to really explore that possibility in order to deeply accept what is right now. This continues to be the case even as I continue to improve in numerous ways. 

FEBRUARY 9, 2011

Living well while being sick: an anniversary post

Black ButterflyI wrote the first draft of this post a month ago when I anticipated the anniversary of my completed withdrawal, knowing I can only write more extensive, complicated pieces a couple of days a month and I wanted to be sure to have a thoughtful piece prepared for my anniversary.

In the month since I wrote this much of what I speak of has come to fruition, albeit, off and on. One need not suffer pain even as it is still experienced. Reality is such that one can be at peace with the nature of life in this body. The personal has little significance in the scheme of things and there is an internal place where everything is okay. We can make our home there. Seems to me that the body can also heal better once in this place as stress is greatly diminished.

There is still pain, exhaustion, paresthesia and all the symptoms of this illness but less concern about it. Less obsession with it. That does not mean not caring nor does it mean not feeling pain. I take gentle care of my body/mind/spirit in all the ways I know how every day, including letting my body succumb to feeling downright miserable at times, knowing the intensity will pass, there is no choice in the matter so letting myself succumb with some peace helps a lot. Watching it and experiencing it but not struggling against it so much which is at the root of suffering.

Since this understanding is itself a healing process and our bodies/minds/spirits are indivisible there has been an easing in all of my experience since I wrote this. This easing is not so much in what I’m able to do or tolerate physically but in how I experience my still sometimes extreme limitations and pain.

From this point on is the original post/draft from a month ago:

“Life has no other discipline to impose, if we would but realize it, than to accept life unquestioningly. Everything we shut our eyes to, everything we run away from, everything we deny, denigrate or despise, serves to defeat us in the end. What seems nasty, painful, evil, can become a source of beauty, joy, and strength, if faced with an open mind.” —Henry Miller.

It’s been a year since my withdrawal was completed. I took my last tiny dose of Valium, the last of six drugs I withdrew from, on the evening of February 8th. February 9th was the first drug free day. It was also my 45th birthday.

It’s something no one wants to hear but it’s unclear I’m getting significantly better…the fact is there has been severe damage…I may always be crippled in some ways. It’s often pretty horrifying to contemplate really. I’m also learning it doesn’t have to be.

I aim for acceptance at this point as it’s the only thing I have any control over.

The fact is people who have studied the excessive toxicity of these drugs link numerous iatrogenic illnesses to them. Grace Jackson has done work in this arena. Her two books speak to these issues. (Rethinking Psychiatric Drugs and Drug Induced Dementia) Being that I’m in an email group with her I hear more of her discoveries as she treats these people in her practice. The fall-out is great and vast. And for now there is no one who knows how to meaningfully treat much of the longterm damage.

Being ill and having symptoms for the rest of ones life does not have to suggest that life need be meaningless nor full of suffering. Many people learn to live quite gracefully with chronic illnesses and pain of all kinds.

No one wants to hear this. That some of us will not recover completely. It’s anathema to utter such words. And that is a stifling and ugly thing for those of us faced with such a potential reality. In order to heal on a spiritual level, if not a physical one, we must be able to mourn what we’ve lost. We must mourn and embrace our injury that it might not overwhelm the rest of our lives.

Again, many human beings learn to live graceful and beautiful lives with all sorts of impairments and limitations. Insisting that everyone hold out for 100% recovery can be experienced as cruel. It’s simply not the way of this indifferent but glorious universe of ours. Shit happens and we either learn to live with shit or we struggle against it. When we accept it can cease to be a source of suffering.

Pain and limitation need not be a source of suffering. Yes, that’s right.

“What you resist, persists.”

“Pain is inevitable; suffering is optional.”

There is widespread belief in this culture (we might call it delusion) that one’s attitude can heal all. And while it’s true that one can ultimately live a graceful, meaningful life while having severe limitations (THAT TO ME IS THE ONLY HEALING THAT REALLY COUNTS), it is often the case that physical damage cannot be reversed. It’s easy to blame oneself when things don’t improve and in fact our culture implicitly and sometimes explicitly encourages this.

Yet, one can learn to cope and thrive in spite of sickness. It’s yet another journey that some of us must take if we wish to find contentment in life. Fighting something that cannot be beaten is not healthy. In these instances surrender is where wisdom lies.

That is where I am putting my energies. It’s possible and even likely that I’ll have incremental improvements for years to come, I may in fact even regain enough health to call myself “recovered.”  But the fact remains that now and for a very long time now my daily life is grossly limited and I need to deal with that reality now. I refuse to continue thinking about that nebulous future day when “I’m well again” and can do the things I’ve greatly missed doing. It’s been 5 years of being pretty damn sick and 3 of being grossly ill. This is not going to lift soon. I am not going to be able to travel or converse on the phone or be social on a regular basis or do a great many other things for a long time. That is how it is. I need to embrace my current reality and that is all. I do not know what the future holds. None of us do. I do not any longer want to hold out for that day when I just might be “well again.”

I need to find meaning and more importantly contentmen.t now

A book I found helpful that embraces this sort of thinking:

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

“How does one face a chronic illness? In 2001 law professor Bernhard became sick from a virus that no doctor has been able to treat. Faced with ongoing disabling symptoms, forced to give up her profession, and unable to take part in most of the activities she loves, Bernhard has dug into the roots of the Buddhism she once studied intensively, looking for resources to cope with such devastating loss. She clearly explains how such Buddhist principles as the four noble truths, impermanence, no-self, and dependent origination help her cope with limited energy and frequent enforced solitude. No longer able to meditate formally, Bernhard describes a set of easy mental practices, drawn from her own daily experiences as well as vipassana (insight meditation), Zen koans, Tibetan Buddhist compassion exercises, and the “inquiry” technique of author Byron Katie, a practice for working with thoughts. Bernhard’s applications of Buddhism are sound and her insights gentle and honest; others may take heart from her determination to use the Buddha’s timeless wisdom to ease the mental suffering brought about by unrelieved physical illness.”—Publishers Weekly

This above book is written by a woman whose illness has a different genesis than mine but the daily reality is at least in part the same. Some of the particulars of psych drug damage are unique, but those differences are insignificant. The idea of surrendering to our reality is the same.

This is a video that talks about her journey.

She says in it that 90 million people live with chronic illness. We can learn to live well and there is no giving up in that. If we someday get better that’s great, but we don’t have to hold out until that day to feel like we are having a life.

I look exactly like her at the end of the video lying down in bed with a laptop in bed. That’s me working on this blog most days…having a life…

Don’t misunderstand what I’ve said here and think I’m “resigned” to being sick forever. I haven’t become resigned…we don’t know the future…and it makes sense to make the best of my life right now. Sick as hell. I want to learn how to enjoy it in every moment. I’m not there yet, though I find beauty in many things very often and would never go back to my life before withdrawal. The full spectrum of experience, including some great pain allows me to feel great joy too, even if not altogether too often. The fact is I know it’s there and I don’t ever want to go back to a place I have no access to it like when I was on mega doses of drugs. I was flat-lined and sick on drugs. The only regret I have is ever taking drugs for maintenance purposes in the first place.

The idea in this piece embraces the fact that one must be willing to accept all possible futures to surrender to what is and that includes both the possibility of getting better and not…

As  I said above, I wrote this article a month ago as I only have a few days a month in which I can really write more complicated long pieces. About two weeks ago I came across a tribute to a Zen teacher on one of my favorite blogs. It seems this Zen teacher also understood how to live well while sick. Thanks Chris Kresser for sharing your wonderful teacher with us. May she RIP now forever free of her pain.

**I’ve found yet another blog that deals with this topic. Determined to Heal which I featured in a post yesterday. Good stuff!

A collection of links:  Information and inspiration for the chronically ill

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See the series here: IT GETS BETTER

While many find their way through after weeks or months, for others it can take years to really get out of the deep disability and darkness it creates. I’m going to start reposting my personal pieces from those difficult days, so that people can see how far I’ve come and find hope that they too might come out of that darkness and find some peace and joy again. I know it’s possible from my own experience and from the many who have found healing and wellness again on this journey ahead of me and with me. 

Most of these were written from within a dark fog of various sorts of pain and hellish sensations. I will be leaving them largely unedited, so consider that when perhaps something is not clear.

During these times I speak of in the series I was unable to sit upright in bed. I was only able to walk to the bathroom and rarely to the kitchen. My muscles became totally atrophied. I was too weak to hold a toothbrush up to my mouth and therefore went a couple of years without doing what most people consider simple acts of hygiene. I wrote with the laptop propped on my knees and my head propped up a bit with a pillow. Writing was a lifeline that helped me continue. It’s been a source of great joy to find out that my keeping this blog has helped so many others. 

This is not my reality anymore. I am up and out of bed. I practice yoga daily. I dance, I walk and Icook and run errands and do chores. I have not achieved perfect functioning. I still can’t make firm commitments or travel. Still I can enjoy many things in life and I’ve developed a deep appreciation for what I’ve been through and how much it has taught me. Life is a wondrous thing and simply being alive is a reason to be grateful as far as I’m concerned. 

For the entire withdrawal documented see here: Monica/Gianna’s withdrawal documented. To see how radically improved I am please visit the personal posts from this year (2014). Or you can also visitMad in America, where there is a collection of posts I’ve written.

This radio interview is good if you prefer listening to reading.

For a quick history in two parts read these two pieces:

and

See also: The anniversary posts: the 5 years off psychiatric drugs documented

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About Monica Cassani

Author/Editor Beyond Meds: Everything Matters