Beyond Success Stories « on: September 12, 2019, 01:03:20 am »
Quietquiet
Hey Folks,
I’ll post this here because it seems the least inappropriate place to do so. I’m actually surprised there isn’t a dedicated section for people who want to pursue action related to questions of justice, advocacy, pushing for research, how to sue practitioners/manufacturers, etc. There absolutely should be. Other sites/organizations may be a better fit to implement action, but BB seems an ideal place to, at minimum, discuss these issues in our own informed, freewheeling, even chaotic manner. I’m pretty new to all this, so I don’t want this to be taken as a criticism of BB. I value this place immensely.
There is a lot of anger and some triggering language below, so if you are not up for that then I wouldn’t read much further. It’s also kind of long.
-Beyond Success Stories-
Everyone appreciates Success Stories. They really do help and I know they have brought many people through some rough patches. At the same time, what I’ve noticed is the air that some of them present, as though writing their story is the last great service that the author is going to provide to those left behind. A final parting gift. And we are very grateful for this gift. I am absolutely, honestly grateful. But BB is a kind of closed community. So that message does not spread very far.
When I want people to understand what I am going through, I tell them to go to BB and read a Success Story, because I think every single person on earth would find it shocking the amount of pain involved in what we call ‘success.’ Ideas like: “withdrawal symptoms may persist for weeks, months or years,” just don’t register with people. Does that mean you have a headache? Some fatigue? You miss taking the drug? No, it means I was force-marched through hell, and I have lost everything dear to me along the way. How’s that for a possible side effect?
I wish every success story was sent by its author to the editorial page of their local paper. To every national paper. To every international paper. They may not run them, but eventually they will read them, and those people have a vast influence. And you don’t need to have achieved ‘success’ to write a letter. I wish there was a collection of them available on Amazon — there is for every other aflicted group, and people read them.
I know some people stick around to offer aid and support, and some people go off and work on these issues in the world in the ways that they can. Thank you so much for doing that. It takes great strength of character. Admins and BIC do such powerful work.
But the overwhelming feeling I get from reading success stories is that people are trying really, really hard to forget about their experience. And that makes total sense. It’s a deep trauma; who wouldn’t want to forget? I’m sure if I ever heal, I’ll want to as well. Some people may not be able to have anything to do with work involving benzo advocacy after the trauma. That is totally understandable. Live your life. You’ve damn well earned it.
But how long has this board been active, 15 years? 15 years of people healing through the solidarity of their fellow sufferers, and still new people keep showing up. New people who have to go through hell because they weren’t told the truth.
This is, of course, not the fault of those who have healed and moved on. And no one should have to live their life in service to a cause they no longer feel connected to. But it is hard to claim to care in any meaningful manner when we willingly turn away from those who are suffering in the way that we suffered. We need to at least be honest about that with ourselves.
Because I know that if even one person had told me of the dangers of benzos I wouldn’t have taken a single damn pill (the potential dangers of the drug is on the package insert of every benzodiazepine – editor). I know this because someone told me about the dangers of a couple of harsh ssris, and when I was offered them, I rejected them. And I also know this because of the street drugs I was warned of and didn’t take. No symptom list can communicate what benzo suffering is like; it takes a survivor.
I’ve read stories where people go back to confront their doctors and then walk away because they just can’t find the words. And I think, who is that doctor going to injure next? Please, please find the words.
They don’t believe us when we are symptomatic because those who are mentally unwell are imminently dismissible. It is much harder to argue with a ‘healthy’ person. Especially one who is going to report you. Especially one who is threatening to sue you. Especially one who will tell every person they know what their trusted doctor did to them if they do not rethink their actions and policies. Phones and email work wonderfully well if you are worried your anger will overwhelm you. Demand a response.
My understanding is that there is no real research being conducted into what has happened to us, nor into ways to help us in our struggle. People have been taking these drugs for 50+ years and they still don’t really know what the longterm effects are in any real way. That is unacceptable, and as far as I know, not true of any other drug of ‘abuse.’ There is a trail of corpses and broken lives all along those decades.
I don’t want to have anyone going through this to feel any extra burden right now. You’ve got enough on your plate. But I see so many threads about whether some vitamin will help, or people passionately debating whether or not to use some supplement. Both of those are important for people to look into when they are suffering. But…
I just wish I saw the same passion being directed at finding ways to convince our elected officials, or the people that run the various departments and institutes of health, or research bodies, or news organizations, or watchdog groups, or our own providers, to at least TRY to do something about this. One ironic thing about victims is that we actually have IMMENSE power, because we KNOW, and we have STORIES. And people believe in stories, and they understand something about pain, and they care when they hear about people suffering. They do, they really, really do care.
They just have to be told those stories enough times and in the right ways. There are some damn good story tellers and experts on this site. Put Fliprain on Dr. Phil. Have […] chair the Benzo Withdrawal Symposium happening in Tucson on the 16th. Make Colin the next King of England. Whatever it takes.
In my darkest moments (and maybe stop reading here even if you have read through the rest, because it is dark) I feel like a person who is chained to the wall of a dungeon with a bunch of other prisoners, being tortured by a psychopath. And every once in a while, a person claws their way out of the darkness and into the light. Into freedom. They escape the dungeon and the torture.
Imagine you are that person who escapes. What is your responsibility to those back in the dungeon, still chained to the walls, with the drills and the saws?
Maybe it’s enough to be free. Maybe you don’t have to do anything. But maybe you can raise Holy Hell. I don’t know. I’m still in the dungeon.
What I want is for us to find out the truth of what is happening to us, and for us to have a lot more help, and maybe eventually to take some action so I don’t feel so absolutely powerless. And above all I want to know that there will one day be a final person to sign up to this forum. And that person will be met with all the knowledge they need, and after they have quickly healed, Colin can close this board down and turn it into a memorial for all the anguish and all the courage that it is a testament to. Or just delete it, because maybe by then we all really could begin to forget, in the fullness of a great victory over such agony and despair.
So this is a desperate rant because I am in pain; I am holding on by my fingernails; I’m afraid of what is going to happen to me. And if I offended anyone then I’m sorry, really I am, unless it makes you do something that helps us. Because a whole lot of stuff in this world was changed because one person got righteously pissed, or just did the hard work. How many people are alive because one doctor in Newcastle opened a clinic and wrote a manual on withdrawal? And why has there been no one since?
Why don’t we have physical places for people to go to in order to recover long-term? Why aren’t there institutes devoted to research? Why isn’t there any real funding? Yes, there are answers to those questions, but those answers are unacceptable. Those places and institutions exist for many other forms of treatment that people need, and often for conditions that impact far fewer people for far less time. We can’t even go to drug treatment centers because THEY MAKE US WORSE. That is insane.
I would feel a lot better if there was more discussion around here about the power we DO have. About the studies we think SHOULD happen, and how they should be conducted, and who we can contact and educate and badger and cajole into taking them on. About the ways we CAN change the minds of those who can immediately do something about this. Because I do know this, we COULD be helped, and quickly. Not necessarily healed, but helped.
Who are the experts on benzo withdrawal? We are. But there are people in the world who know things that we could benefit from. If there is one thing I know about the members of this forum it’s that you can type all damn day long and you do not give up.
Maybe this has all been said before and dismissed for good reasons. If so it’s time to reconsider. I just know I can’t read another post about whether or not I am to blame for increasing my symptoms because I ate some garlic.
Our lives were stolen from us. Stolen. That is a crime. It cannot be allowed to stand and it must not be allowed to continue. The only justice in the world is the justice that you insist on when you have the strength to do so. And sometimes even when you don’t.
My best,
quiet
