Thanks, Alex. Yeah, the music piece was strange. It has always been a refuge and it speaks to the horrors of the insomnia that it became torturous. It was simply the ceaseless refrain that did me in. I still haven’t figured out why that particular song. There’s so much that doesn’t and didn’t make sense. Koans all the way around! Just glad I can enjoy now.
Yeah, the music piece was strange. It has always been a refuge and it speaks to the horrors of the insomnia that it became torturous. It was simply the ceaseless refrain that did me in. I still haven’t figured out why that particular song. There’s so much that doesn’t and didn’t make sense. Koans all the way around!
Just glad I can enjoy now.
The show is Radio West with Doug Fabrizio. You might be familiar with it. He’s a wonderful interviewer but clearly not terribly informed on this particular issue. They seemed interested but wanted me to publish the book first! So, I’ll hit them up again. When I do, if they decide to go for it, I’ll post here. Please, please call in! They’ve got to know it’s not a random occurrence!
Thank you so much! And I’m right there with you on the “special needs” terminology. Makes me crazy. I’ve been using “differently abled” but even that says ‘other.’ I’d rather he just be Cassius, end of story.
So glad we’re both still here! I’m not giving up!
And your patter sound like lovely patter. The kind of patter that needs more space and presence in the world.
Thank you so, so much Ted! I’ve loved reading you on MIA. I’m a big fan!
I understand the strange feeling in going through the old journals. I’ve had to do it to put the book together and it’s pretty painful. But your right – I see how much I thought I was going crazy when in reality I was simply very sick and the world around me was telling me I was ridiculous.
Best of luck with your book!! The more out there the better!!
I’m deeply grateful for all the supportive comments. I’m also (as per usual) heartbroken at how many people have gone through what I went through.
I recently pitched the story to a local NPR affiliate that does in-depth interviews. The producer asked me if my story was indicative of a broader problem or “just one person’s bad reaction to a medication.” My jaw dropped. It continues to drop and my only refuge is in the writing.
Deepest gratitude to all of you. May the eyes of the medical establishment’s eyes be opened (only time I’ve used e.e. cumming’s for something slightly less than poetic).
Absolutely beautifully said. You made ME cry. And I’ve been convinced. Much as I want to erase or clarify the cultural connotations that are handed down with the word “addicted,” I think that, as you say, the reader will fall to her or his common understanding and not look further.
Thank you so much for your incredibly beautiful and articulate words. And may the gaba grandmother’s come in to heal. May your suffering be eased more and more every day.
As a matter of fact, I think I need to write this type of discussion INTO the book. I had a horrible experience in a grocery store when I ran into a yoga teacher of mine. It was during the time of my most intense w/d and I was posting a lot. She’d taken a cursory glance at my posts and had simply decided that I was talking about being an “addict” in the most damaging way. I was, in her mind, someone who abused, who craved, who was a junky of sorts.
She looked at me with this yoga like demeanor and asked if I was “getting help with the cravings.” It was a perfect example of someone riding the horse of the cultural lexicon and dismissing me. Incredible.
So, you’ve given me much thought. Much, much thought. Thanks to all of you.
Ally, humanbeing et all –
Such great feedback. This is why I’m posting. I NEED these discussions to make sure I approach and discuss this issue as wisely as possible.
And it’s always been my interest to investigate and redefine language when I see that it’s proscribed meaning that’s so beget with cultural connotation that people become blind.
Still, I take your point. It may not be the time or place to try and reconfigure the language that oppresses. Especially since so many of us have experienced overwhelming judgement in the face of such language.
Thanks for the incredible discussion.
I’m deeply appreciative of this discussion. This is one of the most difficult arenas in writing about dependency. The language. I too was furious at being labeled an addict – something I viewed as having its origin in recreation, escape and abuse. I have, however, come to believe that it’s too easy to make black and white terms – blame versus no blame.
My intention in the book is to very clearly show, through the laying out of the story, that no abuse occurred. I was following doctor’s orders as were so many. Still, my body was indeed addicted/dependent. I use the terms interchangeably precisely because I want to debunk the idea that addiction only comes with abuse. The anvil of shame is so heavy, I want to lighten it – to create greater understanding that dependency/addiction can come when one is not simply acting as an “addict” – the word that so many of us push away from.
I want to create an opening of discussion for those who see dependency as only addiction. Cultural blame was my shame and my intention is to unravel it slowly. That’s the purpose of the book.
Thanks everyone for your comments. It’s a hard line to walk. I’m keeping this particular discussion close, especially as I do my rewrites.
Hurrah! What a perfect piece of awareness!
Humor is the salve that we need when the bandages get stuck!!
Absolutely! And what a beautiful ritual. I’m going to check it out. I still have so many tears arising from my experience that I don’t quite know what to do with them. I’ve thought a lot of trying to create a ritual to help me support releasing them.
Thank you for this. I’m going to look into Wisdom School!
What a great expansion of the term. Thank you. It’s funny, when I was in college, I had a meltdown because I was so concerned that my college’s value of intellectual discourse would hammer the spirit out of me. I very nearly dropped out but the sentiment has stayed because our culture reflects this same bias – intellect over essence and reason over experience.
Thanks for your great comments, Alex. Good to hear from you!
I absolutely agree. Totalitarianism can only occur when those who have true power abdicate it. We’re led in that direction by bright, shiny objects and by being told that powerful emotions are aberrant.
Here’s to zombie defeat! I’m pulling off my bandages now!
Ah, Ted. Thank you, kind sir.
Wow. Such deep thanks, here. And you’re so spot on. When I first began writing for MIA, I was deep in the landscape of withdrawal. I was in the river and doing my best to simply keep my head above water. I’m so happy to know that what feels like an internal shift of more clarity and balance is indeed being reflected in my writing.
And my heart goes out to you with your statement of frustration, stress and relentless depersonalization. It’s a horror that only those who’ve been there can truly understand. Despite your experience, you’re incredibly clear, lucid, compassionate and incisive with your words.
All the best and may there be steady increases in well-being for you.! It may be slow but my hope for you (as with me) is that it’s up, up, up!
Wow. You got me teary.
And I agree that our culture can often be the one that’s “disabled.” We’re addicted to speed and consumption and numbing ourselves. And all too often we have language that separates us rather than bringing us together.
I feel like one of the lucky ones. I got some heavy lessons but I’m humbled and honored to have had them. I’ll continue to try and be more like my boy and less like the adrenaline crazed culture that surrounds me and us.
Thanks so much for your kind words.
Not in the least off topic. I agree heartily and with a tender heart. I’m so in love with my boy because he is such a profound teacher. Truly.
Thanks for your lovely comment!
Loved reading this post. So thoughtful and concise. There are so few black or whites in this world, but teasing out how to find your way through the weeds is essential. I almost went for my LCSW years ago but backed off because the paradigm felt so oriented in pathology.
I love that you’ve gone the filmmaker route. Any chance you’re selling DVD’s? I’m on the West Coast but would love to have some house parties or try to connect the art houses here with this kind of work.
Regardless, I’m glad you’re part of this community. Keep up the lovely work.
Bonnie & Julia –
I so appreciate the work that you do. I echo many of the sentiments noted above. My own path to health has probed the use of some supplements, but I’ve mainly focused on nutrient dense foods, good exercise and keeping my joy pocket full.
I wonder if either of you have investigated the different metabolic pathways in the liver? I’ve heard some about this from neurologists I know and want to know more.
Regardless, thank you for your work and for speaking out. Tremendously important!
I deeply appreciate the discussion here. It’s true that black and white doesn’t serve us. These drugs, as with many others, are incredibly powerful. They knocked me on my arse which, when I was deep in the territory of insomnia, I wanted. Still, my concern about lack of knowledge about what happens to the brain/body with any kind of prolonged use is deep. And the slide into prolonged use can happen so easily. This is my gravest concern. Despair leading to use, leading to prolonged use and then the sudden stun of dependency.
Absolutely, Ted. And the language we use around benzos in common culture must also be changed. Language helps us define the way we perceive things. Once language changes, perception changes.
My deepest condolences. There are so many who’ve been lost the same way. I’ve felt awkward using the war metaphor but it seems fitting. Only those who’ve been there know how savage it is. And the losses are tremendous and, worst of all, silent.
Oh, F – My heart goes out to you. I’m so very sorry for your loss.
And you are not alone in being a medical professional who is unaware of this horror. Shame will only add to your suffering. And “addiction specialist” is a flaccid term. I had one tell me that I was “obsessed” with my detox and that she’d never heard of w/d symptoms like mine. I later discovered that she took a few classes to get her “specialist” certificate.
Please also know that my long term plan is to publish the book and then speak to medical professionals about this tragedy. Send me your story if you will. I don’t know if they’ll listen, but I’m going to do everything I can to be heard.
All best to you and your family.
I will keep shouting. It’s incredible to me still how few people understand what a living hell benzo w/d and tolerance w/d can be.
Hang in there. Take the long view and be gentle, gentle, gentle with yourself.
Oh Healing! Yes, yes, yes – a thousand yeses! Please send me your story. And, in terms of supporting my story getting out there, please know that I’ll be running a Kickstarter campaign to help me financially in the final stages of writing the book. It’s called Dear Little Fish and it’ll launch on the Kickstarter website October 28th. Send it to everyone you know.
The whole experience held more losses for me than I can count: my memory, my marriage, the movement of my career.
So yes, the more voices the better. The more I can be a voice for many the better!
Oh mercy, anterograde amnesia!! The one and only reason I’ve been able to put my story together is because I journaled whenever I could. It was my saving grace and helped me see that I wasn’t going crazy. If not for that, 2010 and most of 2011 would have been a near white out for me! My grandmother died that year and I barely remember it. My daughter was 2, my son 3 and I have no memories of that time. Heartbreaking.
9 1/2 months. Amazing, amazing, amazing!!
That blows my mind. I think I had a year of w/d tolerance and then a year of actual w/d and the losses were heavy.
Thank you for hanging in there. Your story is as important as mine. Your life, your health.
Be as gentle to yourself as you can. This is very much like a war. It’s internal and the enemy feels invisible. Once you’re there, you’re in deep and there’s no way out but through.
You inspire. And yes, I’ll keep writing. How can I leave the death camp and not speak for those who are still there?
Thanks so very much. And I don’t imagine that I can stop writing about this. It was truly a death camp and having been there makes me want to do everything I can to help those that are still there. Breaks my heart and shows me how little our medical establishment knows about what their golden drugs are actually doing to our bodies. Feels like we’re guinea pigs of a sort. Dispensable, medicated, neutralized.
I’m so appreciative of all the comments. Scared, and appreciative. It’s inconceivable to think that a medical doctor could have caused irreversable brain damage. This is what moves me forward. In the last week I’ve met two people who have been ripped off benzos by well-meaning, clueless health professionals. It’s epidemic. I’m doing everything I can to educate with calm, clear, researched based stories. Hell in a hand basket and here’s why. The last week I sent a pitch to both 60 Minutes and Frontline. We’ll see if they’re interested in tackling the dark and dirty. I hope. With all my might. I don’t want one more person to lose their life or sanity because of these drugs.
Deep thanks to all of you.
I’ve been reading your blogs for a while now, all with that overwhelming sense of anguish and compassion. Yes, our cultural fabric is tight and narrow and does not admit for anyone who does not cooperate as a full cog in the system of the empire. We know this. But to see what you’ve been through enrages me. You have such strength, such beauty. Thanks for kicking some ass.
I have a movie recommend that I think you’ll find salient. Got to http://www.whatawaytogomovie.com.
$14 bucks. It’s beautifully written. The chains of the empire. Worth seeing.
I’ve fought this system it feels since I was born. I got caught and now I’m fighting back. Glad to know you’re out there, shining and alive and speaking the body electric.
I’ll definitely mention it to my doctor. Thank you! The good news is that I’m no longer on oral contraceptives, but I did take them for a long time, so it’s always worth checking into possible complications. Especially one that sounds a bit scary!
Dr. Cornwall –
Thank you so much for your kind words. And, yes, the bogus science and the path from cultivation of medicine to the consumers that ingest it is so dark and so invested in money, not concern for the wellbeing of the populace that it stuns. I’m amazed that the head of psychiatry at your previous place of employment would swallow the propaganda hook and sinker. Reminds me of Daniel Carlat’s book, Unhinged. It’s a dark tapestry that’s woven and I can only hope to be part of the pull that unravels.
I had a discussion with my father recently where he claimed that pharmaceutical companies are now so handcuffed by government regulation that they can’t properly inform and distribute their fab new drugs to the populace. I nearly choked. This is why you and I and Whitaker and the tens of thousands of misled consumers of these drugs need to howl and howl with vigor. Vigor and hard science. Medicine in a consumer based paradigm is bound to fail on many counts.
I hope to be one of the many who tear the fraudulent veil, who say it’s not Big Pharma that’s handcuffed, it’s us. So, thank you. Let’s ride the horses in and kindly and accurately, tear the paradigm apart.
I didn’t sleep last night. Maybe 20 minutes. The rest of the evening was spent pacing my room, staring out the window at the near full moon glow, practicing deep, even breaths and reminding myself that this is just one night. I will sleep again. I will.
I’m touched and amazed at how many people have gone through what I’m currently going through. There are so many of you, of me. And yes, I’ve read Anatomy of an Epidemic. Whitaker is a soul worth walking alongside. His investigations opened the door to insights I couldn’t reach on my own. What luck. For those of you who have gone through the inferno and come out, I am stunned at your strength. One of the most difficult aspects of this kind of iatrogenic illness resides in the poor social economics. There’s no cultural fabric to hold something so deep in the underbelly of our medical system. This is what I hope to bring to light. I wanna break down the door and shine my flashlight. This stuff is inappropriately prescribed all the time. I believe that the more of us who can speak and speak loud, the more who can press for research, the more light will shine through the cracks.
I’m deeply grateful to all of you. And to Whitaker and Cole who keep this community of discussion going. May we all break down some doors.