We lose a lot in benzo withdrawal—jobs, careers, our savings. We lose our sanity (for awhile). We lose our physical health. We lose our belief in anything good. We lose our sense of who we are. And, we lose hope. These are hard things to lose, no doubt. But the biggest loss in benzo withdrawal isn’t our bank accounts, our jobs, or our health. We can regain those things. The biggest loss in benzo withdrawal is our relationships.
It’s hard for friends and family to understand just how sick we are; how lost, lonely and frightened. Our journey back to health can take so many years. People get tired of traveling the long lonesome road with us. One by one, they fall away, leaving us to trudge along, alone. Our feet are set on our path, a narrow, gut-wrenching road that demands all of our attention. There is nothing else in our sight, nothing else that pries our eyes from the next step, and the next, and the next. While we are focused on our harrowing journey, our friends and family are living their lives, going forward, growing, becoming. We don’t have the capacity to witness their lives. We cling to survival, doing our best to make sense of our now unrecognizable lives.
During withdrawal, my four children graduated college, started businesses, bought homes, fell in love, fell out of love, and fell in love yet again. They turned into true adults as I did my best to follow along with their lives. But no matter how much I wanted to bear witness to their unfolding into adulthood, I watched through a hazy veil—a broken brain that wouldn’t allow me to reach beyond the tortured reality I was lost in and touch their hearts as I did before withdrawal. The years slowly ticked by and my children and I grew apart. Not from any ill will or wrongdoing on anyone’s part. It just happened. I couldn’t keep up with them; I was unable to register their realities. Not from lack of caring—from a broken brain—from benzo withdrawal.
Tonight I sat with three of my children (and my first grandchild) and listened to my daughter’s boyfriend’s band play at a local pub. My daughter and I danced together, her hands wrapped around my waist, our hips keeping time to the beat. I thought my heart would explode from so much joy. Yet, at the same time, so much pain. So much incredible pain of knowing I’d never get those years back. I’d never be able to walk alongside my children and usher them into adulthood after all the years of raising them on my own. When the night came to a close, I got in my car and drove home alone, hot tears streaming down my face; the depth of my loss pressing down on my heart. It was the first time I had registered the pain; a wild animal caged, biting and clawing at the bars.
Now I’m able to participate in my children’s lives, however, it still isn’t the same. It’s not the same feel or flavor as it was before this whole nightmare began. It’s only recently that I’ve been able to do the things I used to do. Dance. Exercise. Laugh at jokes. Relax. Be in the moment, fully present. It will take time for my family to begin to include me in events that they long ago had to exclude me from because I as so sick. We’ve all got to relearn how to be a family again. And I have to learn how to be this new person on this side of recovery.
It’s a bit challenging, picking up the pieces and moving on. You have to relearn so much. You have to figure out who you are, this new you. It doesn’t come naturally, the knowing who and what you are, at least it didn’t for me. I’m still sorting it all out and making sense of it. I’ve been pulled in various directions, exploring. But I refuse to feel guilty over not knowing right off the bat the who-and-why-and-how-and-when of me. I’m sure I’ll morph again before the dust has settled.
As I find my way back into the lives of the people who matter the most to me, I am grateful that I am well enough to re-engage. But at the same time, there is an ache in my heart for what was lost; for what could have been. Everyone, including myself, has to learn how to dance with me all over again. The steps we did together before withdrawal don’t quite match the beat of the music any longer. Perhaps we’ve got to not only learn new steps, but we’ve got to hum a different tune as well.
I hold onto the hope that what was lost can be found, even if it has changed shape along the way.
Jennifer you have to look on the bright side of things, the fact that you’re alive because life is what matters and think about all the people that have died in the time that you have been going through this and are not alive now to experience what you’re experiencing … Stay positive my friend.
Insightful post. Again!
Hello Jenn,
So glad you have turned that final corner. I hope ur life is wonderful from now on.
I have been off Ativan for seven years after a horrendous cold turkey. I couldn’t function for two years but after that I became well enough to get on with my life. Still haven’t turned that final corner as I still flare up if overstimulated in any way. After reading your blog, I have started going for longer walks in the morning. I hope this works for me too! Seven years is such a long time! I would like to be able to have a slice of chocolate cake, just once on my birthday! I still can’t imagine that happening!
Thanks so much for your blog and website, they have really helped.
Please understand that am happy for everyone that has successfully withdrawn from benzos:)
But I am concerned that although many people lose years of years of their life during their tapering process, it still seems to be a total taboo in the benzo community just to question whether tapering is the right solution for all.
In my own case,I decided that tapering was not the way for me, and instead adopted an alternative strategy of using meditation and other aids to cope with tolerance and inter-dose withdrawal symptoms – which were often both psychically and somatically acute.
The result, after 20 years of diazepam dependency in which my dose escalated from 1mg per WEEK to 25 mg per day I was able – without effort – to finally stabilise my dose at ‘ceiling’ level of 30mg / day – despite tolerance. During the 15 years of dose escalation and 5 years of successfully maintaining this ceiling dose I did NOT ‘lose’ ANY years of my life – but led a creative and fulfilling life as a teacher and author – publishing 25 books. Yes, I did and do still experience several negative long-term effects of diazepam use – but then so ALSO do many people who have successfully withdrawn through tapering.
On the other hand, to my surprise, I have alo found that my strategy of trusting I would one day establishing a ‘ceiling’ dose has paid off in another way too. For I now find I have begun to manage small reductions in my dosage without any effort at all.
My case may be unusual, but I believe that it is still evidence that tapering (at ANY rate, no matter how slow) is not a ‘one size fits all’ for benzo dependency – and that a truly individualised approach must also challenge the taboo against questioning the standard tapering method.
This taboo also has the grave danger of stigmatising or infantilising those those who have been unsuccessful in tapering (despite the best advice and all messages of love and support) and making them feel like failures.
My message in a nutshell. Yes one can trust that one can ‘get through’ the ordeals of tapering process and come off benzos and this can eventually work for many. If so, great. But one can ALSO trust that – despite tolerance – one can reach a comfortable ceiling dose WITHOUT losing many years of one’s to the ordeals of tapering.
Note: Numerous medical studies and meta-studies now confirm that only 30 to 52% of people achieve success in tapering with or without helpful interventions. The widespread idea of a 90% success rate idea is medically skewed by Ashton’s initial study – which ignored a lot of factors.
I totally agree with what you’re saying. My psychiatrist suggested the same to me, but I got upset and sought a new doc. I have cut back my dose to a stable amount along with lifestyle changes and hope this will work for me. I think I am in the 50% that cannot achieve total benzo freedom. Only time will tell.
Dear Henry,
I am not sure why you feel that the benzo community recommendation to taper in some way is stigmatizing or infantilising to those who don’t follow that method. I’ve never heard anyone put down someone who has decided to tackle benzo withdrawal in some other fashion other than a slow taper. The reason a slow taper is recommended is that many of us become very ill when we cut even small amounts. Some people have had seizures from reducing their dose by more than 10%. So we believe that a slow taper is the safest, and hopefully easiest on the brain and body. Sure, there are some people who are not badly harmed by these drugs and they can get off without much trouble. But one doesn’t know how they are going to react to a reduction in dose, so caution is advised.
I’ve talked to so many people from around the world who cut too quickly and ended up disabled for a long time. Considering my own experience of extreme illness from any reduction of the medication and the stories I’ve heard, I couldn’t morally or ethically recommend any other method of withdrawal, however, I will never judge someone who tries an alternative method. The main thing is to be safe and to avoid as many benzo withdrawal symptoms as possible.
I wish you the very best as you get off of the rest of your dose. Freedom from a benzo is a beautiful thing! It sometimes comes with a price, for those of us that the drug damaged, but it’s a price we gladly pay to return to a healthier state in the long run. God bless!
To Jennifer: thank you for your kind and well-wishing response. I am not quite sure if you fully understood that, though my dose has quite spontaneously come down by a small amount (and that during a very high stress period of my life) after I achieved my goal of reaching a ‘ceiling dose’ (something a psychiatrist told me was quite impossible!) I have no intent – particularly at my age – to seek to ‘get off’ the rest of my dose through any form of tapering regime, however slow. You write also: “I’ve never heard anyone put down someone who has decided to tackle benzo withdrawal in some other fashion other than a slow taper.” I think that is your kindness showing. So I also thank you for just allowing my comment! Because when I first shared the many reasons for my decision NOT to withdraw through slow tapering on the benzo.org.uk forum (including both age and in order not to interfere with my chief sources of healthy life fulfilment) I received a BARRAGE of hostile responses – and was then excluded from it – excommunicated!:( PS I would be happy to share with you privately a more detailed account of my benzo journey, which began in 1990 during an acute bout of pneumonia when I was given diazepam as a muscle relaxant to reduce the pain of coughing.
To Angelo: it took me nine years to receive a diagnosis of what was then still low-dose dependency from the anti-benzo campaigning psychiatrist Malcom Lader. If I had got advice on slow tapering in the first year of my very low-dose dependency that could have worked. But not after nine years and certainly not after 2O. Malcom Lader remarked in a recent video interview with himself and Heather Ashton that if we could predict which people belonged to the 50% who find it impossible to taper everything would be a lot easier – but we can’t. That is why I raise the question of ‘To taper or not to taper’ on my still evolving site benzohelp.blogspot.com – which I would welcome your and Jennifer’s comments on. PS the best advice I ever received in the nine years in which no addiction counsellor, doctor or psychiatrist knew enough to even recognised my dependency or offer sound advice in dealing with it,the best advice I ever received was from one talk with a lady who ran a support group a long way from where I lived. When I told her I was taking my diazepam on an ‘as needs’ basis she firmly instructed me to stop this and to immediately stabilise my dose – even if this meant initially RAISING my dose to the minimum level at which inter-dose symptoms were not too severe. Even some new medical approaches to tapering begin with a massive dose increase. But in response to your comment: I think we are far from being alone in thinking we might not achieve total ‘benzo freedom’. But then we live in a culture where the idea that ANYTHING can’t be achieved is frowned upon. Yet it is an simple existential fact that no one can achieve freedom from ALL the limitations in their lives – whether it be freedom from benzos or any other sort of freedom. Strange that this existential given is something that does not seem to occur to people – or that they don’t want to recognise in our ‘positive thinking’ culture! If we take this cultural attitude to its logical conclusion, should we then, for example, ask diabetics to make it their main aim to becoming ‘insulin free’???!!! And I do see strong parallels between a diabetics dependence on insulin and benzo dependency – except for the fact that benzo dependency comes largely from criminal medical malpractice and denial.
To Jennifer: I thank you for your kind response, though I am not sure from it whether you understand that it is not my INTENT to ‘get off’ the rest of my dose, even though it has become to come down slightly all by itself, and painlessly – and that during probably the most stressful period of my life.
You write also that you “never heard anyone put down someone who has decided to tackle benzo withdrawal in some other fashion other than a slow taper.” I think this is your good nature speaking:) When I first shared my reasons NOT to taper on the benzo.org forum (principally not wanting to lose my chief form of life fulfilment over many years) I got a BARRAGE of very hostile replies – and was then excluded from it – excommunicated! So I thank you also for just accepting my first comment!
PS I would be happy to share with you privately an account of my 26 year old benzo journey, and how I came to make the decision not to taper.
To Angelo: I don’t think we are alone in not being able to achieve total ‘benzo freedom’. But there seems to be an ingrained idea in our ‘positive thinking’ culture that anyone can achieve freedom from anything. In reality, the simple existential fact is that none of us can achieve freedom from all the limitations in our lives, whether benzo freedom or any other sort of freedom. Yet this seems not to occur to people – or else is something they are afraid of recognising, like the existential fact of death. Followed to its logical conclusion this mindset becomes absurd. Are we to now ask diabetics, for example, to think positively – and make it their life aim to become fully and completely ‘insulin free’???!!!
And I do see strong parallels between insulin dependence (not ‘addiction’) and benzo dependence – except that benzo dependence is largely a result of almost criminal medical, pharmaceutical and psychiatric malpractice.
PS. the best advice I ever received before my benzo dependency was acknowledged by medical professionals was to stop taking diazepam on an ‘as needs’ basis and to first of all stabilise my dose – even if this meant first of all RAISING it to the minimum level necessary to alleviate inter-dose withdrawal symptoms.
Would welcome comments from anyone on my still evolving site: benzohelp.blogspot.com -which also addresses the question ‘To taper or not to taper?’
To Henry: Thanks for posting your blog… I will check it out.
Benzo use does indeed create a “rock and a hard place” existence for some. Getting off the drug seems too difficult, yet staying on the drug can cause its own difficulties. Tolerance withdrawal is a very real phenomenon. Some people hit a level where no amount of up-dosing helps. They are so badly damaged. I’ve encountered people who experienced that. When you couple that possible danger with what we know to be true, that long-term use of a benzo drastically increases your risk for dementia, falls, and other nasty events later in life, it seems prudent to get off the drug, if one can. I would never judge someone for staying on the drug, any more than I would judge how they chose to get free. What we hope for in the future is doctor education so that these drugs will not be prescribed for more than a handful of days, as a temporary bridge to real and lasting help for what ails us. But we’ve got a lot of work to do for that to happen. Some of us are doing what we can to ensure it happens. Frankly, I’d be delighted to see the laws change so that no one can be on a benzo long term while I am still alive. I’d feel that my life really made a difference!