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LETTERS FROM WAKE ROBIN FARM

Benzobuddies and the Politics of Healing and Helping

At the time I finished up Accidental Addict, I had only the kindest things to say in it about Benzobuddies.org, a message board for people trying to get off of benzodiazepines. Now I have a few afterthoughts and, as Rachel Platten puts it in my favorite line of “Fight Song:” All those things I never said, were wrecking balls inside my head.

It’s time to say them!

For me, it was a relief to sign onto the Benzobuddies board, to find that others were suffering from this mysterious discontinuation syndrome that most people could not get their doctors to even recognize. I was not alone! It didn’t take long, though, to clue into the playground nature of much of the discourse, and note how anger at doctors and a person’s situation could quickly translate to anger for others on the board.

Along with the sharing of comforting commiseration, a continual frustration against the medical community is voiced, and everyone laments our seeming inability to get the word out about the dangers of these drugs. Here’s where I thought I had a contribution to make. It seemed clear to me that people still in the throes of withdrawal and recovery from the brain damage done by benzos cannot be taken seriously by their doctors. It’s too easy for them to write everyone off as simply nutcases. My plan was to heal and then tell my story. Since I was already a writer, this assignment seemed like a no brainer. I innocently thought the fact that I had such a squeaky clean record for prior substance abuse made me an excellent poster girl for this issue. How could the plot be anymore straight forward? I was a solid person. Xanax and Oxycodone damaged my brain. I struggled to heal and finally did so, and without the help of any medical professionals. So, beware, it can happen to anyone.

It’s not like I was the only one to consider writing a book about this, though. In fact, it’s a popular topic, the books people on the board will write sometime in the future when they’re finally up to it. People float their ideas and collect endless encouragement. People compliment each other on their writing and say how wonderful these unwritten books are sure to be.

When I posted on the board that I was already writing a book, however, the moderators jumped all over me. I guess it was threatening, somebody going ahead and actually DOING it. I was told, for the first but not the last time, how seriously they take their rules. Got it. But I knew I didn’t need anybody’s approval or encouragement to tell and publish my own story, and that seemed to disturb them.

When I posted that I had indeed published Accidental Addict, the moderators removed my post, citing rules against linking to any commercial sites. Same thing if I ever said I’d done a blog post people might want to check out. Nevermind that there were no links. Never mind that the picky rules they would laborious write out were enforced only selectively, and others were allowed to post links to blog posts, books of interests, YouTube videos etc. When I would speak up about my book, the moderators—one in particular—would swoop in like a pack of the witch’s flying monkeys and disappear my posts, issue stern warnings against me.

I came to feel that the Benzobuddies board has rules, but the moderators have no wisdom in their “rulings.” And it’s not about these stated rules anyway. It’s about breaking the larger, unspoken rules. The consensus on the BB board is that we have nothing to be ashamed about and our story should be told, but people who actually dare to speak up, go out there and take this story public are penalized. I watched in dismay as a fellow BB friend interested in setting up a boots-on-the-ground group to help local suffers was reprimanded. What? She should have been encouraged. Privacy rules were cited, but what if people aren’t worried about privacy? What if some of us truly DON’T feel ashamed of the position we’ve been put in and actually mean it when we say we want to help educate people about the dangers of benzos?

The Powers at the BB board look askance at anybody who actually wants to try to help out in the wider world. This was most evident in their booting off of Monica Cassani, a San Francisoco woman who worked tirelessly for years to offer a website—Beyond Meds—which contained resources for people trying to get off of psych meds. The technical rule she broke, according to BB, was posting a link to her site. It was commercial, they ruled, because she had a button for contributions. Ha! As she put it, she didn’t collect enough for a weekly latte! Never mind. The real rule she broke was that, like me, she refused to kneel before the moderators. As one of the mods put it, “she was such a difficult woman.” Right. Difficult because she never signed onto the idea that the mods were all powerful and all-knowing.

In the end I was thoroughly excoriated for unabashedly using the term “addict” in my title. Reams (if that’s a word that can be applied to on-line posts) are written on the BB board lamenting the misunderstanding in the wider world between the terms addiction and dependence, as if avoiding the label of “addict” will help the slightest in speeding healing. People, I’m here to say that your brain doesn’t care what you call it, the physical effects are the same. I had doctors who treated me like an addict and doctors who insisted I wasn’t one. None were any help at all, so what difference does it make?

Yes, we desperately need the doctors to understand what’s going on here in both the benzo epidemic and the opioid epidemic, but in the meantime, shouldn’t everybody be encouraged to get their stories of iatrogenic addiction out there? My idea, in sharing my story, was to give people a heads up and let them know they better have their own backs in accepting prescriptions of any of this stuff. It’ll be great, someday, when and if doctors understand all this better, but in the meantime, save yourself.

Read all the cautionary stories you can find. The question is not whether you are officially to be labeled an addict; the question is whether the drugs you’re taking might be hurting you without your even realizing it.

Many people find help on the Benzobuddies board, and you may too. But please don't take what you read there as the last word on anything.  Read More 
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The Understandable Panic of Those in Chronic Pain

An NBC online headline the other day breaks my heart: Chronic Pain Sufferers Are Scared by Ohio’s New Opioid Rules.

In a nutshell, the state of Ohio is trying to restrict the flow of painkillers in order to help fight the plague of opioid abuse. Those who take the pills for chronic pain are of course freaking out, blaming the government and people they see as the actual addicts for their dilemma.

I feel terrible for them, but this is a false construct, setting up the issue as a three-way fight between government regulatory agencies, the doctors, and the patients dealing with chronic pain. The government tries to stop the problem by turning off the tap of opioid drugs, the doctors fear getting in trouble with the government and try to develop strategies to defend themselves from “addict types,” and the people in chronic pain rail against everyone who they perceive as conspiring to keep their drugs from them, and this includes those they characterize as the “real” addicts.

Having suffered the difficulties of getting off of these drugs myself, I feel like a lone voice, crying in the wilderness. The question is not, are you an addict? It’s are these drugs you’re on helping or hurting you?

Of course those who are addicted (okay, call yourselves dependent if it makes you feel better, but your brain doesn’t know the difference) insist that they can’t even begin to continue with their lives if somebody doesn’t prescribe them these drugs. That’s right, because they’re addicted, and their brains, without the drugs, will rebel.

A crucial fact that nobody talks about much is something called Hyperalgesia. It means that while the drugs initially knock back the pain, eventually, the person taking them actually becomes more sensitive to pain. Got that? It makes the pain worse. This is why opioids are not considered a viable, longterm option for chronic pain.

All the energy that will go into these folks desperately trying to make sure they can still get their drugs should actually be applied toward figuring out a program of getting off of them. Rather than now shunning them as addicts, the doctors who prescribed the drugs in the first place should be helping them, not just sending them off to so-called “pain clinics.” A common line is, “I’m not comfortable prescribing these to you anymore.” Apparently they were comfortable enough with the prescription to get the person hooked in the first place.

I know about pain. I’ve lived through this. I’m not on any of these drugs anymore and I’m not in pain. If you want the gory details, it’s all in my book, Accidental Addict. I should warn you that one reviewer claims I’m not a real addict, I guess because once I went off, I never relapsed. But that doesn’t mean I didn’t have to hang in there and suffer through the months and months of withdrawal.

Also, check out Physicians for Responsible Opioid Prescribing, a group that has been trying to get to the root of the problem by getting doctors to understand that, despite what they’ve been told by the pharmaceutical companies, opioid painkillers can be highly addictive for anyone.

Do I have to remind you that the drug companies do not have our best interests at heart? They want us addicted. What better way to sell the maximum number of pills? Read More 
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