I am not a role model

 

By sharing my experience and learning so much about the experience of withdrawal and recovery I’ve created an aura of authority around my online persona. Some of it is legitimate. I do know more about withdrawal from psychiatric drugs than most people. I’ve devoted more time studying hundreds of peoples experiences as well as alternative treatments than just about anyone including most doctors.

On the other hand I know nothing. I am in the dark making my way and it’s fucking scary sometimes and I often feel terribly alone.

Something strange has happened repeatedly now for the last year. It started almost exactly a year ago.

When I am down, really going through a tough patch with my journey, feeling the pain of withdrawal etc, random people come out of the internet woodwork and metaphorically punch me in the gut. It’s happened again and again now. (The first time it happened was when my brother died and someone from online I thought was a friend turned on me.)

I’ve thought about, “is it some sort of karmic law? etc.” But now I just think that there are people who enjoy sucking the life out of people when they are hurting…we do in some sort of way pull in the negative when we are in a negative space. The perpetrators don’t even know they are doing it and I don’t think they are necessarily horrible people in most if any instances. They see a pink underbelly and they go in for the kill but it’s all unconscious. I tend to curl up and let myself get beat up with a bit of a fight. The “bit of a fight” is not always done very gracefully, hence making the problem worse. I have never, though, attacked someone’s character or called someone names. I’ve only feebly tried to stand up for myself and usually that has made the problem worse.

The thing is, I don’t have the answers and I’m not actually an expert in anything. I simply know more than most about this phenomena of withdrawal—a phenomena for which there is virtually no knowledge anywhere. Here on my blog it is at least  laid out for people to see all in one place unlike anywhere else.  The thing is my knowledge does not make my individual road map any easier than someone who has not done any of the study and sometimes it leaves me all alone with no one to turn to because I’ve been the one people come to for help and support and not vice versa. We’re dealing with a circumstance virtually no one knows anything about. I know a wee bit more than most but this is like I’ve got three drops of the ocean of knowledge needed while everyone else has one or less. In other words, I’m not very far ahead of the curve.

My favorite yahoo group imploded yesterday. In part because of how I reacted to a situation. I was a moderator and the owner is absent. She left me in charge. In any case the situation was familiar…being kicked while I was down, again. Anyway, it all ended with my excusing myself from the group and from my role as moderator as I don’t believe I was able to keep a healthy perspective. I banned someone for attacking my credibility, experience and character. I found it too devastating to listen to. The argument started fairly and I was dealing with a disagreement just fine, but when it got personal, well I didn’t deal with that so fine.  I couldn’t tell if I was overreacting or not and so promptly after banning that person I too left as I’m not comfortable with censorship in a group that I’m not an owner of. Frankly, I don’t hesitate to ban people on this blog anymore…sorry, but there have been some real assholes come my way and it is my blog. Anyway in the yahoo group today was the end of a beautiful experience with many beautiful people.

This is a disjointed and unclear post…I’m not sure I’m accomplishing anything. I guess I just want to say I too need help sometimes and all my “authority” does me no good when it comes to dealing with my day to day struggles. I’m in the muck and mire just like everyone else. I may be able to give good advice from time to time—though nothing should ever be construed as more than a suggestion because, bottom line, I DON’T KNOW YOU and we are all infinitely different.  When I need advice I often have nowhere to turn for similar suggestions and in part I’ve created that reality. I guess what I wonder is it possible that there be a different reality? I am doing something that simply has not been done before with this blog. Is there a way that I could do it differently and get more of my own needs met too?

Of course some of my needs are being met or I wouldn’t plod on. I get a lot out of the blogging community and my readers, but I still feel terribly isolated and alone. In the blogging world—at least really active bloggers, I really am alone. I find solace with many of my brothers and sisters who have been labeled such as I, but who else is going through a long and protracted withdrawal process? No one.

I do know people in my yahoo groups with some similar stories but we too are different in many ways. There too I am in general the one passing out information. Also in general I’ve been on more drugs at higher doses for much longer than anyone.  Withdrawal boards and groups all together have lots of information. Of course I learned much of my foundational knowledge in these groups, I need them and they help me profoundly. I don’t want to minimize their importance, nor the importance of the members of the groups many of whom suffer much more profoundly than I even if they have less dramatic pharmaceutical histories. Again, I am different in that I’ve articulated my journey to such a degree that it’s sometimes hard to connect with a lot of these brave folks. There are notable exceptions to this and it’s not at all black and white. I do have close friends from a couple of the groups. And there are also a number of people whom I greatly admire in terms of how much I learn from them routinely.

Yesterday I thought of a friend I met through the blog who is actually also a member of the yahoo group in question. She is someone I’ve actually met in person because of the blog. I thank god (or the universe) I thought of her and I’m not sure how I managed to, but she was a life saver when I chose to call her. And so I was not alone when I was most in pain. She truly has a journey as insane as mine and worse really and she has probably put in an equal amount of study though she doesn’t have a blog. Eureka, a soul mate on this lonely journey, at least for last night.

Anyway…just want you all to know. I’m nothing special. I just write about my story. That is the only thing that is different about me. I write my story and perhaps I’ve studied a bit more and maybe thought too much about this stuff. Some people find that inspiring, but I truly am very unimpressive and have so many flaws and walk this journey stepping into so many ruts…

The people who attack me see that clearly—in some ways they are the most lucid. They see the flaws, the pink underbelly and my uncanny knack of stepping into ruts…like following my doctor down the rapid withdrawal path and then the cold-turkey nightmare. Some people see that and not only do they see I’m flawed but they hate me for it and they attack. I am not ashamed of anything I’ve done, but I know I’ve made many mistakes. I was explicit in the telling of that particular story that I went against my better judgment. That I was seduced by a skilled but in the end also flawed doctor. And yet this situation was flung in my face to discredit me publicly.

I said at the beginning of this blog on my first profile that I would share it all, good and bad, success and failure and I said it not knowing what the outcome would be.  I present my vulnerability everyday not knowing if I will make it or not—just operating on a faith that I will. That honesty has created enemies and threatened people and I don’t really know why.

Sometimes I just want to get the hell off the internet and return to the relative safety of the real world where I was never cruelly attacked in my whole life. Where I had loyal loving friends who looked out for me.

But my world has drastically changed. My loyal loving friends have no way of understanding what I go through with this withdrawal and my psychiatric label which was never an issue for many years until the drugs completely knocked me down…and then they couldn’t make sense of me anymore….not of this particular monumental part of my journey….I do hope that it will go back to something similar as before after it is over. I can no longer walk among the “normal” at this given time as I suffer from chronic physical illness from the toxins and so I cannot make commitments out of the house still, though I do get out and about more and more frequently—I just can’t tell ahead of time when I will feel well enough and if I’ll have the physical strength. Until I can make commitments outside of the house, my world will remain heavily internet oriented.

Anyway regardless of what I’ve said above all you readers show me again and again that you do understand. And so I am much more isolated without my readers. Without my blog friends. And yet where I find comfort I am also repeatedly hurt. I don’t know the solution.

Please keep in mind that this is how I feel now in this moment. I don’t go about feeling crappy and isolated all the time. This will pass. It is, as usual, just another part of the documentation I’ve set out to do on this journey.

I wrote this a over 24 hours ago and most of what happened was at the height of the end of withdrawal from my emergency meds—all the ugliness that took place in the group, like I said happened when I was at my worst. I was waking with night terrors every night and so not sleeping well I was feeling distressed as a result— those seem to have been caused by the Risperdal which I am now off of. Like I said, this sort of thing all happens when I’m down so to speak. And so by the time this is published I’m sure it will have passed—this time around.

***And the good news is the very first night I got off the emergency dose of Risperdal I slept like a log again. No night terrors. So I am back and strong for the time being.

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters

23 Responses

  1. Dear Gianna,
    I know you’ve experienced this before and it never ceases to amaze me. I can’t imagine what kind of people would want to hit someone when she’s down. It is not only cowardly, but downright evil!

    I don’t believe you’ve ever professed to be “the” expert on this subject; rather someone who’s been on this journey. However, as we both know, you are an expert because as you said, “No one knows this better than you do.”

    I feel the same way about depression. As far as I know, no one has experienced more episodes than I have. And I would not only be highly offended if someone called my experience into question, but I would feel terrible if I wrote about a depressive episode and people were critical of me rather than empathetic.

    I’m sorry you feel isolated. I know what that’s like. I also know what it’s like to feel like my friends don’t really know what I’ve been experiencing. Now that I’m well most of the time, I can understand their perspective better. And it’s so much easier for me to “fit in.”

    I know you’re on your way to feeling well most of the time too, and when that happens, it will feel like being in heaven every day. While I’m grateful for the breadth of what I’ve learned, and I’m a far better person for having learned it, I’m so relieved that I no longer have to deal with all of the difficulties and disappointments of a chronic illness!

    In terms of the people from the yahoo group, maybe it’s just an indicator that it’s time to move on. If the members can’t sympathize with your difficulties and delight in your successes, then they’re not the right group for you!

    With love,

    Susan

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  2. David

    I really wish that people weren’t such … well … “assholes” is the word that comes to mind. It takes such guts to do what you’re doing here, and frankly, I think it’s your mistakes and vulnerability that inspire other people. They see you fall and get up again, so they know it’s OK if they fall, too. The fact of your getting back up reassures the rest of the falling folks that getting up is possible.

    People who never fail are terrible, terrible role models. Perfection is not possible. Perfection is not something anyone should strive for. The best role models are human beings who make mistakes, who admit to those mistakes, and who go on to learn from them and continue on down the road.

    So. I think you are a role model. What you may not be is an encyclopedic expert who is perfect in every way. But a role model? Yes, you are. At least, you are by my definition.

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  3. Gianna,

    There’s a lot in your post, and so I hope you don’t mind if I take a few words to respond…..

    “Studying – hundreds of people’s experience”…..”alt methods”, etc – Yes, you have, and thank you for doing so….
    This is unchartered turf. The conventional psychiatric model would have us all convinced that once on these psych drugs, forever on them….Your personal study, and your willingness to share it is a good thing – a great thing. Thank you.

    You “know nothing”….Well, you know, I think at the end of the day, many of us feel like this sometimes…I know I certainly do….When it comes to recovery, the one thing it helps to “know” about – the one thing it helps to really focus on is ourselves….and, you have certainly learned a lot about Gianna….in sharing what you’ve learned, you encourage others to take this journey – and, it’s an inward journey as much as anything…..a spiritual one (not necessarily religious, but deeply spiritual)……So, i would only say that if you look at all you’ve learned about yourself – you know a lot!

    People attacking vulnerabilities….I have come to believe that this must be the darkest side of our own humanity….And, a very frightening side….If there is anything to learn from the numerous times you’ve been attacked it is simply how differently people treat you….If you begin to notice that some of us empathize, and want to reach out to you, it’s because we care about you…..the ones who attack don’t….That’s the best lesson I think on this subject…..Cruel people exist in the world – surround yourself by the ones who love you….with your greatest strengths, and your greatest weaknesses….We are all a package deal….Hang out with the ones who take you as you are….

    “3 drops of ocean”…..others having only “one or two”…..a great analogy….This is what any of us know about the human brain, and the human mind….It’s all unchartered territory, and psych drug withdrawal…..even more unchartered! You know two to three times what most people know (including most doctors)…..That’s a good thing….At least you know more than most others, and are willing to admit that you still don’t know much….I wish the docs out there would be equally honest…fewer people would be injured by their “expertise”….

    Your “authority does no good”…..in your “day to day struggle”….I think authority does no good for any of us in our day to day struggle, because like you’ve said, and as many of us have come to understand….We are all so different! So, go back inside…..turn inward….to the spirit….(hope this doesn’t sound “preachy”….really, I do)…..but, the answers lie in finding out more about yourself, and trusting in the answers you find…..trusting the path your on….believing there are good things along the path….

    Being in the “blogging world”…..at least while you recover….keep making it the best world you can…..If you’re not able to work right now, and are involved in blogging, I hope you’ll keep doing what you’re doing! Helping so many people, simply by sharing your journey….You’ve given a lot of hope to many people, and you’ve made us all stop long enough to search for answers….

    I know this is a long response….Didn’t mean to ramble, and I sure hope I don’t sound like I’ve “figured the whole thing out”….I just want to say, that I think you are a very special person Gianna – someone who means a lot to me as a friend.

    Duane

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  4. Well, there are a couple of things that you could do with your knowledge. You could write an academic paper, which you might have to publish on here, because if you’re not acknowledged as an expert, the people who are already in the field might be reluctant to let you in.

    Alternatively, there’s a NLP guy, called Nick Kemp, whose blog is linked on my page. He’s into developing NLP specifically to treat addiction (not the same as withdrawal, clinically-speaking, but still). I’ve already pointed Shelly Hart in his direction (I came across his blog completely by accident), but it might be worth seeing if he’s interested in collaborating on something.

    And then, if you do one, or other, of those things, you will have the evidence that people seem to want to back up your credentials. Although, you should understand that some people will always be inclined to attack you, if only because they perceive that the qualities that you exhibit are things that they believe should not be exhibited, whatever they may be (sorry, a bit cryptic, but there’s nothing objective about personal attacks).

    Matt

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  5. Sloopy Cowbell

    Another beautiful post, albeit one tainted with sadness.

    You may well document what you see as a failure. Not so. Imagine yourself as a scientist, conducting one experiment after another, none yet providing the result he needs. He doesn’t discount those intermediate experiments as “failures”. They are nothing of the sort. They all play their part in the process of finding the correct solution to the problem. The raw results – desired and not – are crucial in understanding your own life, and for others..

    No doubt someone in the future will read your blog entries for that topsy-turvy passage in your life, and will find great use for them.. Possibly when they read on, and find that you picked yourself up, dusted yourself off, and carried on regardless and stronger than before. That will give them the boost in stamina needed to follow on themselves..

    And there is a HUGE victory in there… your successful withdrawal from Risperdal!..

    Sit back and bask in the glory for that!

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  6. Nicely written, Gianna!
    Hope you’re feeling a bit better today. Sometimes just writing it out is a great help.
    As Sloopy said above, you have reason to celebrate–finally getting off the risperdal is huge!

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  7. (((Gianna)))

    I have so much to say to this, I am left speechless. I don’t even know where to begin.

    I am so glad you are off the Risperdal. That’s one sign of making progress again after regressing for a bit.

    As for mean people, some people say things because they have the cover of the Internet and know they will never see you in person. That anonymity allows them to be free to attack you in whatever way they choose. Sometimes it’s personal; sometimes, they’re just being @$$h0les. Nevertheless, it always hurts. We are so sensitive, we take everything, personally or not, to heart.

    So much for being speechless. lol. I think I had more to say but I can’t make completely coherent thoughts. In any event, even though you are not an expert, your blog is an incredible resource and I value it very much. You’ve gone through so much and have shared your experience with so many people so that they can go on to lead better lives.

    Sometimes, I like to think what I went through is so I can help other people who are struggling with the same thing. While I wish I never went through it, knowing that my experience can be a positive to others makes it somewhat worthwhile.

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  8. PES

    Hi Gianna,

    I just wanted to say I’ve only recently been reading your blog ( and I love it ), and that this scenario happened to me recently as well. It was not on a forum, but occured with a fellow psychiatric drug victim I had become friends with over about the past 2 years or so.

    It was a simple disagreement that spun out of control. I was terribly hurt, but was ready to dust myself off and move on, when I heard through a third party that this person was venomously attacking my character and christianity. I was slandered with all kinds of mean things. But I said nothing. For the first time in my life I said nothing. The very day this took place, I was watching Dr. Wayne Dyer speaking, and he said ( as if he were talking straight to me ), “If someone calls you stupid, or labels you with some kind of hurtful label, that does not mean you become that. It just means the person who said it is someone who needs to put labels on things”. That’s all I needed to hear. Right after I heard Dr. Dyer say this, I read a quote… “If you roll a stone over someone else, that same stone will roll back on you”.

    I think this is what the person who went after you was doing. He/she is just someone who needs to label others. Someone who is trying to take the stink off themselves and stick it to someone else. Someone who is going to get a stone rolled back onto them.

    On another note….
    Thumbs up for reaching the end of Risperdal again. Onward and upward!!!

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  9. I was reading Stephanies blog and Radagast wrote the following to explain troll like behaviour on the internet.
    I think it could apply here as well.
    “Some people, it’s true, take delight in instilling fear – it’s their release, and is probably how they’ve been treated. Nobody would listen to them, and so demonstrating how they were treated is the only means of communicating it. And then it becomes a behavioural pattern, and continues to be so, long after the thing that they feared has gone.”

    But it subdivides in conscious acts of hate and unconscious ones.
    A way to deal with insults is to realize whatever the insult is, is likely what that person finds important and fears in themselves.
    “Your fat”, the person fears being fat may give innapropriate attention and importance to physical appearance.
    “Your stupid”, (without a good arguement), the person fears appearing stupid. To play at any thing in life we have to risk failure and being the fool.

    The saying to remember this is, when you point the finger at someone , remember you have several pointing back at you.

    I hope I don’t unconsciously insult people , though I think I do.

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  10. Val

    Sometimes I feel myself on the verge of losing all faith in the human race, Gianna…
    [& yes you are a role model, a damn good one!]
    Hang in there darlin’

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  11. Doe

    Gianna,

    I agree so much with what David said.

    I’m really tired today too (stayed up until 3 am!), and not feeling at all articulate, but just wanted to chim in a little support.

    I think it’s amazing that you’re on so little drug now–that’s pretty incredible!

    I related to much of what you wrote, and have felt many of the same things. It hurts so much, sometimes, to put yourself out there, and let your guts flail out in the wind. You jump off that cliff in good faith and then as the wind is whistling past your ears, you’re like “Oh fuck! What am I doing? Everyone can see my guts now!”.

    But I think you are coming from a place of integrity. And your readers are the most intelligent, thoughtful, spirited people I’ve ever encountered on a blog. I’m amazed by the depth people’s comments here.

    In history you can see that strong people almost always attract haters, people that want to bring them down.

    And like David said, people who never fail aren’t good role models. Who can relate to that? And also, like he said, we are inspired by your mistakes and failings and your successes…your so-called failings are what make your successes even more inspiring.

    I think when you’ve made the decision to basically be very truthful with _everything_: The good, the bad and the ugly…and that honesty is your bottom line. It leaves you vulnerable, but it’s coming from such a strong place, really. And there’s just no way it’s not going to hurt sometimes. And when it does, you can come to us and allow us to put some balm on your wounds.

    Much Love To You!

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  12. bipme

    I am new to this post having only recently discovered your journey by seeking information on much of the same medication problems. First, I deeply and humbly apologize if I have written anything to you that was hurtful. Secondly, however, I want you to know how helpful your blog has been to me in my own withdrawal journey. I value your sharing your experiences and your knowledge.

    Your sharing has been an encouragement to me to do what I felt was right for me in my journey. My support team refused to recognize my concerns about my medication’s side effects. What a wonderful difference my taking these steps has made.

    Yes, I have my difficult moments, and your writing about your severe difficulties, has enabled me to become watchful, cautious (but not fearful) and confident in my own abilities to work “with” my support team as a contributing member without feeling like I am their experiment.

    The words, “Thank you” do not seem to fully cover a full expression of how I feel about your contribution in writing this blog. I am ever so grateful to have rested here in my journey. Your writing has given me one more lighted star to illuminate my path.

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  13. You have once again made some powerful insights. In various places, I have shared my story about getting off of all drugs for depression and bipolar in hopes of helping others. Some people, a few, seemed grateful for my help, but many were upset and attacked me. So my experience agrees with yours. There seems to be some who will attack us even when we are down and just trying to help. We probably need to accept that some people are like that. We certainly could not change them. Some are not ready to hear. Some do not want to hear anything that conflicts with their ideas. In AA we say that a person needs to be ready to quit. If the person does not want to stop drinking, there are no magic words. No one could convince them, not even Jesus. All I can do is share my experience, if someone really wants help they will grab on to what I have to say. I just have to walk over the bodies of the ones who are not ready. If I try to help someone who does not want the help, I’m keeping others from gettting help who could be helped if I focused on them.

    We probably can’t guess why people attack us. Maybe they have tried many things and are just plain worn out. They have been disappointed too many times. Of course, if we succeed that means that they probably could also, but they do not want to go through all the work. It does take a lot of work and mostly a lot of courage to get off meds–your friends, family, doctors, our whole culture wants you to keep taking your drugs.

    Keep up the good work. Your blog is serving to nextwork us people who want to live a life without drugs.

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  14. I have to applaud markps2 for his comment.

    There is a lot in this. I am attending a counsellor and working on this at the moment.

    Even thinking of the angry person, owning his own anger, we have to consider that we are showing a vulnerable side to people. By bringing myself back into the present moment, by using my witness, and realising that it is not the little vulnerable inner child inside me reacting but the adult, who is well capable of owning his/her space and protecting herself.

    Gianna, Thanks again for your blog. You blog and the blogs that you have recomended are just a whole avenue of inspiration, help and support for me and for others. Your honesty makes the site what it is. Is there anyone that is in perfect awareness on this planet – surely we are all striving for that and being human at the same time.

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