For three and a half years, I wrote updates on my recovery and posted them on the website Benzobuddies.org, mostly in the “Birthdays and Celebrations” sub-forum, but a few times in the “Exercise Support Group”. I was out of my mind a great deal of the time, but there was some beautiful writing that came out of it. It’s reproduced here, lightly edited.
October 22, 2014
Been reading this forum since I stared tapering off 4mg Klonopin (since 2003/2004, I think) a day in March/April of 2014. Last 1/4th of a 5mg of Diazepam was July 2nd and have been in Withdrawal Syndrome since then. I guess it’s been a almost four months and three weeks now. Over the time, everyone here has given me a great deal of strength and helpful information, so thank you all for that.
Most of the I’m Losing My Marbles Help Me feeling is down to a somewhat manageable level, so I hope I won’t be a huge burden. I suppose I want to help, if I can. I guess I’m one of the types of people who are strongest for themselves when I feel I’m helping someone else.
Thank you for your time.
A Short Story
October 22, 2014
So, I wrote a little bit today a bit of a Halloween story I wanted to write because I thought of how scary what I’ve been though (and still am going through) is and I thought I’d share with my Buddies. Like every good Halloween story it’s a little bit scary and a little bit funny. Hopefully just scary enough to give one goosebumps. Hopefully the funny parts are actually funny. Anyhow, not finished. Also, super first-drafty. While the spelling is as impeccable as modern computer technology can assure, please forgive the errors both in syntax and in judgment.
“A Mouse In The House”
A mouse ran into my apartment, twice.
Early evening, August, dank and rainy. One of those nights that makes people disbelieve global climate change. It should just be miserable. Instead, it’s miserable and wet and cold.
This gives me the perfect opportunity to splay myself in the beanbag. To read. Perhaps have an apple later. The Honeycrisps are on sale and I have a fridge full of them. Four of them, but they’re very large. And sweet. So sweet. Each bite is a melted liquor mouthful of cotton candy; the kind that comes in the paper foil bag, always slightly stale and firm but almost painfully sugary.
On the radio — except it’s not a radio, it’s digital, delivered over the internet instead of the airwaves, though in one of those ironic twists that spice up daily life, the internet is delivered through radio waves now — through the speakers of my ancient, analog stereo system that once complained of being overdriven to distortion in the neighbor-disturbing amplification of Paradise Theatre or possibly The Rise and Fall of Ziggy Stardust and the Spiders from Mars painstakingly distorted clicks and bleeps tumble out into the room, clip about like ponies in a clover field, then reassemble about the beanbag with smirks on their faces to assure me they mean business and what would I think if they clawed about the labyrinth for a while and upset some grocery carts and possibly put the compost in with the recycling. How would I feel about that?
I enjoy it far more than I feel I’m supposed to. It tickles the inside of my head. It makes me forget the screaming of tinnitus that is my aural day-in-and-day-out. Once upon a time I believed Klonopin would make that go away. It never did. Instead, it made me stop caring about it. Loud as ever, it still drowned out other sounds not just at the same register but any sound near or below the same volume. Unsurprisingly, having removed the ability to care about halves of conversation lost did little to diminish the feeling that I was missing something. This was quickly resolved by the new lack of caring that had been established as my new joy in life. And it was joyful for far longer than it really should have been. Even had I learned of the detail of experiences I was newly missing out on, it’s doubtful this would have mattered at all for me. For my new life was one of carefree loss. Sheets to the wind. Drunk on a newfound ignorance of detail.
Having denied myself for so long, these days I crave detail.
This particular music is all about detail. Detail and the deliberate breakup of that very detail into new facets and the forms that followed from the breakup. The style had been dubbed Intelligent Dance Music, though that brought up a bit of contention because from there one follows that there is somehow Unintelligent Dance Music.
Still, it has an undeniably danceable beat.
It is to this mocked-up beat that my fingers oscillated on the obsidian mock felt, mock velvet of the beanbag cover. There were no beans in the filling, instead it was some type of foam. Possibly shaped using the same molds that once made styrofoam peanuts. That slightly disturbing merger of circus peanut and conchiglioni shell that managed to look like neither yet look like it might taste like either.
When I was a child we had a beanbag chair that contained actual beans. Black-eyed peas, actually. We found out when it burst after being jumped upon. During one of those moments where no one was really sure if there was jumping or chasing or perhaps the thread had been pulled and it all just sort of spilled out on its own. They were everywhere on the shag carpeting of the wood-paneled television room like millions of jaundiced doll eyes, pale yellow with an unrealistically large black pupil. It was the funniest thing ever and we laughed all through the punishment we so richly deserved, having learned nothing.
Months earlier, when Princess and the Pea Syndrome was at its fiercest, the beanbag without beans spent its time stacked up in the bedroom with futon and the mattress and everything else that smelled of industrial solvents and felt to the skin as soft as rusty razor blades. I have no idea what I slept on, but I do know that I didn’t sleep much at all when I tried to. Instead, I was so afraid of sleeping that I actively avoided even trying. For weeks this went on: Me, afraid to go to bed because I might not be able to fall asleep.
Not that I would swear an oath on getting a full eight hours even last night. But in that space between a fevered mind grasping and rapid eyes moving sometimes it feels like sleep. And that’s enough for now.
It leaves me wondering though, when the hallucinations might return.
I shooed the mouse out the front door and watched it leave.
The book I’m reading is “Spark of Life” by Professor Frances Ashcroft, a little textbookish piece on ion channels and the way they generate electricity along the membranes of cells due to the influx of sodium and the outflux of potassium ions. Because it’s aimed at a general audience, the book is filled with tales of diseases, neurotoxins and genetic mutations that either effect or are effected by ion channels. Also many electrocution anecdotes. Because apparently the English-speaking public isn’t really all that interested in science unless it includes seeping or sharks. Preferably both.
It’s not an easy read and I’m having difficulty wrapping my head around Ohm’s Law when I see it out of the corner of my eye. The mouse again.
Which was impossible, because I’d just watched her leave, said “farewell”, and locked the door. I was certain the mouse didn’t have her own key.
Again with the shooing, but this time, I put down the book and stared at the door for an hour. This was approximately how long it took before I was able to watch her wiggle her way back in, underneath a bit of torn rubber weatherproofing.
Later, I explained this to my apartment manager.
“I saw a mouse.”
“Oh?” she said.
“A small one, in my apartment,” said I.
“We’ll have to call the exterminator.”
“Oh,” I paused, “Really? There’s no way to have her removed without killing her?”
“Leaving her alive isn’t a good thing.”
“Maybe she’ll go off and do a Wind in the Willows?” I asked, hopefully.
“Wouldn’t that be nice?” she mused.
We both spent a quiet moment there together, on the doorstep in the rain and the cold, contemplating how nice it would be. We imagined the mouse was also witness to the conversation, what with so much riding on the outcome.
“Don’t you want to know how she got in?” I ventured.
“In the apartment.”
“Through the hole in the wall?” she suggested.
“The hole in the wall behind the water heater?”
“You’re telling me there are animals living in the walls and that they have easy access to my apartment?” I asked, in dismay.
“I didn’t think of it that way.”
“I was going to tell you she came in through the front door, but that seems a lot less frightening than it did initially, now that I’ve been informed what’s lurking in the walls.”
My fears seem to be multiplying daily.
“There’s something wrong with my smoke alarm.” I complained later.
“It goes off whenever I’m in the shower.”
“I’d rather it didn’t.”
“I understand,” she said, comfortingly.
“It interrupts what is otherwise a perfectly enjoyable shower.” I say, “What should I do?”
“It’s probably detecting the lack of oxygen.”
“It’s detecting the lack of oxygen,” I repeat, “in my bathroom.”
“What you should do is turn on the fan and shut the door.”
“You want me to shut myself in the bathroom and suck what little oxygen is left out of the room.”
“More or less, yes.”
“It seems counterintuitive to the whole idea of warning me of impending danger.” I counter.
I live in a state of permanent panic, and my apartment manager seems to be in on it.
The exterminator arrives a few days later and I never see the mouse again. I imagine her driving a mouse-sized Tesla and founding a startup that builds React Native web apps for small-to-medium-sized corporate clients.
Prepared to do Anything
October 22, 2014
I feel very fortunate to have been highly motivated to stop the Benzos. Everyone’s story is unique, though we all have similarities, but mine involves a lot of pain and the use of a wheelchair as an assistive device. I was strung out on every imaginable thing, but the pain kept escalating. It got to a point where I figured not being medicated might possibly be better than being on medications that didn’t seem to be working at all.
If there’s one skill I have in life, it’s being exceptional at seeking to avoid pain. So, there I was, highly motivated to stop. Very highly motivated. Quite possibly more motivated than I’ve ever been at anything in my life. Ever. Despite getting signals from every direction that I’d never make it, that it wasn’t worth anyone’s time or effort to help me, that being told there was nowhere for me to go for help.
As it turned out, it was the Clonazepam that was keeping me in the dang chair!
So, every moment I’m on my feet is a soaring high that has no equal. And I spend a great deal of time on my feet nowadays, knowing how thin that line is that separates the two.
But, of course, I’m a novelty seeker. Even that gets boring after a while. Sometimes I amaze even myself.
I fight the sadness, melancholy, sometimes by feeling it. It’s a thing that I used to do a lot when I was in acute withdrawal, just telling myself I’m a passenger, along for the ride. Turned something horrible into something interesting. It’s Halloween in the U.S. coming soon, so everyone’s looking for a scare. We’ve got the best haunted house in town right in our own heads!
That doesn’t always work, of course. So, for me it’s finding things to do and then breaking those activities down into their component parts. Our brains are working overtime at over-analyzing things, right? Might as well put that to use. Even though many times the processes are faulty and foggy. Still, doing the best one can is all that can reasonably be expected, so that’s what to do. Turn the sickness into a superpower.
So, yea, breaking down things like exercise or cooking or going to the store into component parts. Then doing part one, even when that’s difficult. Sometimes it’s close to dang impossible. If it’s ever impossible, then I can break that down again. Find a part that’s possible. Then do it. Then have a freaking huge celebration for myself inside my head. Having that celebration releases dopamine and it’s what my brain is craving when I’m feeling down.
So, yea, either I spend some time alone with the maudlin emotions just watching them from a safe distance, trying not to get too emotionally invested in them or I try to counter them by finding easy and frequent milestones to reach for.
It’s not as easy as it seems writing it down, though. Always more tricky in practice. But this is what we do, right? Learn how to live our lives without the medication we took to not have to learn how to live our lives?
December 02, 2014
Six months ago this morning I was eating a slice of a slice of a valium pie, against my wishes, to rule out too fast a taper. Six months ago tomorrow night, I was in the emergency room, certain that I would not survive benzodiazepine withdrawal without a great deal of professional help. I was told, in no uncertain terms, that there just wasn’t any help for me and that I was having an emotional crisis and to go home and get some sleep. At least they didn’t make me take more valium.
Sleep wasn’t forthcoming, the so-called emotional crisis went on and on and became just as much a physical crisis more days than not. Feeling like a rusted sports car with its suspension tuned too tightly on a washboard gravel road I rolled through acute withdrawal watching seconds tick away like they were three-day weekends, and that on the days I could move at all, not the days where my muscles were locked so tightly I couldn’t move at all without having the wind knocked out of me.
Much as I wish this was a reminiscence of horrors long past, the last month was probably one of the more challenging of the last dozen. While it wasn’t acute-level crazy, I was now stuck with the new life I’ve been building for myself, without much of the support I’ve had the last ten years and responsible for caring for myself, and now, in such debilitating pain, not able to do so, but having no choice but to limp to the grocery store or the post office or wherever needed going when something needed doing and couldn’t be put off until I felt well enough. Somehow I survived, likely because I didn’t have any alternative to surviving that I wasn’t too terrified to pursue, and despite the freak-outs, the self-consciousness, the terrors, and the pain, I re-united with a friend who I’d not seen in seven years, brought a new therapist into my confidence, and even made some progress on the apologies for my behavior over the last twelve years to a few of the people who deserved them.
When I spoke with my doctor to let him know how useless taking one milligram of valium had been, that it had been worse than useless, that it had broken my spirit because previous to that at least I could say I had been clean for one whole one week, and I asked how long I would feel this way, he told me that I’d feel jaggedy for a month and then I assumed that I wouldn’t feel jaggedy after that, that I’d be feeling fine or at least whatever the opposite of jaggedy was. At six months out I can say that I finally feel just jaggedy.
Windows and waves don’t really describe my experience very well, though there was a time when I used to feel like I had my own sort of windows that looked out on how I would be feeling a few weeks later though they were only brief glimpses. I’d describe the times where I felt better or worse as being either less or more aware of my internal vibrations. The vibrations were always there, at more or less the same frequency, though certainly that changed like the tides, and I don’t think they’ll ever go away because we have to vibrate, being alive, and our vibrations are, when properly tuned, what make us the “free flowing meat waves of possibility” that we are. Hyper-awareness of the intensity of the vibrations would set in at night for me, when the light outside would dim and the world would quiet and force me to be quiet with myself. Autumn was in full swing and winter coming on fast and darkness in my part of the world becomes the standard unit and daytime becomes the exception. Wave never seemed strong enough to encompass the sense of foreboding that would creep in on me during those hours. Mornings were really pleasant for me even if sleep isn’t what I did most the night before because it always meant a new day and either a chance for a new experience or the certainty that today would be just a little tiny bit less terrible than yesterday.
Today I have the shakes pretty badly, but it’s just the shakes, that’s nothing compared to what I’ve been through. When a fear grips me it’s usually that something Might happen, or that it’s Possible for it to happen, or what if it just plain Happens and those fears aren’t fears on which I need to spend my energy. It’s probably too much to hope that I’ll stop ever having those kinds of fears, my therapist tells me “not to let them rent space” in my head but I tell her that these days my head is public housing for those kinds of thoughts and that it used to be so much worse and the current tenants aren’t all that bad in comparison. I guess I still have that problem where I carry an analogy just a tiny bit too far. If I stop having random fears about fears I’ll consider it one of those benefits where this whole prolonged withdrawal experience actually makes me a better person for having gone through it.
And I really do feel like I am better for having survived just this far, not knowing how much farther there is to go, and knowing both of those things I think is part of what helps to make me a stronger person than I ever was going into this. Yes, I was certain I couldn’t do this on my own, and yet after been told every time I asked for help that there really wasn’t much help available, I gutted this out the old fashioned way: Just surviving this moment, not a day or a week or a month; always finding something to be grateful for; and realizing that I’m not a good objective observer of myself.
I’ll carry those principles with me as I go forward. I don’t really consider myself in benzodiazepine withdrawal anymore, though for sure I have physical symptoms and sure my brain shakes as much as my hands, without a doubt, but I consider myself moving on with my life and dealing with all the issues that I ended up taking klonopin to not have to deal with instead. Dealing with them just meaning finding different strategies for observing challenges in my life, or in more simplistic terms, getting a different perspective on the Jenga tower that is my life. Knowing just how fragile life is helps me to appreciate it so much more than I did and having that appreciation helps give me that perspective I was lacking before. That I’m just not very good at being objective about myself gives me a world of options for dealing with the inevitable days where I just can’t do anything right. I’m learning just how much everyone in this world is just making it all up as they go along. I look forward to participating in life’s improvisational session every morning when I wake up now. Sometimes, like this morning, I wake up early because I want to get an early start on it. That, for me, is all I could possibly have asked for out of klonopin or therapy or recovery or any ridiculous thing that purports to give it to me that I had to trip over to find out I had it all along.
Somehow I managed to make it this far without a much in the way of medical help. I’ve taken the occasional ibuprofen, methocarbamol, and medical marijuana, any of them on an “as needed”, not regular, basis, and though there was always a very pressing need at the time I turned to them, none of them ever really provided much relief from the symptoms. Whatever causes this extended paradoxical reaction we seem to have to benzodiazepines, the only solution seems to be to let the pain and the crazy run its course, no matter how bad, cross your fingers and make hope a plan. I did have the occasional wine or beer in early October but decided against it for the time being which hasn’t really been a terrible idea since it helps reduce the number of improbable causes for the innumerable effects that beg impossible answers right this very minute. I don’t believe that alcohol in small amounts could cause kindling because we all ferment about a third of a cup of alcohol in our guts every daycite. The amazing biological factoids we learn when we become hyper-obsessed about health.
I’ve been so very fortunate, I have to admit. Except for a few weeks during acute withdrawal, sleep hasn’t been that big an issue for me. There are nights when I wake at four a.m. and start contemplating every stupid decision I’ve ever made in my life, but I’ve always done that and bad decisions make the best stories anyway. For me it was always the pain, the muscle spasms, and the anxiety, mostly social. The most messed up part is that even klonopin, except for the first two weeks I took it, didn’t make any of those things better. My doctor’s one mistake was when I told him after the first two weeks that klonopin wasn’t helping me anymore, he said that I was probably still getting the anti-anxiety benefits. I don’t blame him, it’s not his fault. How was he suppose to know? He didn’t want me to be taking klonopin in the first place. It may not be my fault I’m in this situation, but it is my responsibility and I won’t throw that off to my doctor. My health is always my responsibility, it can’t be anyone else’s.
So, this is me at six months out, looking back at that little slice of valium pie in my shaky hand and feeling such a failure. I didn’t know this at the time and I very much doubt I could have ever seen it as a positive thing at all, but looking back at it now, that moment of supposed failure on a patronizingly sunny bright July morning at 8:30 a.m. was the moment that marks the six months of success I’ve managed since. None of which would have been possible without all of you here on Benzobuddies. I know I don’t post, but when I’ve had questions, and I always had so many, the answers were always here. Thank you, everyone. I have so much respect for each and every person who has gone through this, is going through it or even considers giving it a try. It is the single most difficult thing I’ve ever attempted in all my life and I have lived a life of danger seeking and difficulty shattering and this just takes the cake.
Which reminds me! I promised myself a slice of cake at some point in this process and today seems to be as good a day as any. Maybe with just a half candle? Who am I kidding, cake won’t last long enough around me to stand a candle. Chocolate this time, I think.
P.S. The cute thing about my handle here is that one can’t really be Vegan with a capital V and eat parmesan. Which means I’m not really Vegan, not with a capital V. Which means that the world of cake is wide open to me without any emotional gymnastics involved. Viva la cake!
Nine Months, Like Riding A Bike
March 03, 2015
If you’ll indulge me in this celebration of a milestone, this temporarily noteworthy moment in time, I can’t promise anything but I’ll give it my all if you join with me in this ritual of commemoration, pregnant with significance, of the day when it all ended and the point where it all began.
If you don’t believe for a moment all this jubilation let me iterate: nouns are my bouquet, my disco dance, and my nine-month birthday cupcakes; verbs are my jug of wine, my run of luck, and my rapture of saints; adjectives are my present, my delicious cool and my exultant, spicy fabulous. This is my song of songs, if you’ll forgive the intimation of imitation.
If you were to ask me what one thing could be done to alleviate the weird manifestations of this ridiculous affliction we share, my answer would be what worked for me, what changed the way I think and feel from night to day, from chalk to cheese, from unresponsive to irresistible. You’d very likely tell me that it probably wouldn’t work for you because you are in too much pain, but I’d tell you how much pain I experience on a daily basis and that my feeling has become, if it’s going to hurt so much I’m going to give it a darn good reason. You might say that the fears and anxieties are too much, that it just wouldn’t be possible to do something so obviously dangerous, to which I’d have to reply, to wit, the best way to become fearless is to perform fearsome acts and miraculously survive. What if the depression makes it impossible to perform, you ask, and I would answer calmly, knowingly, that the most powerful antidepressant ever made, that ever will be made, comes in the form of a rush of wind, a scent of land and sea, a glimpse of sky, a taste of freedom, and a song in your heart, and the best part of all is that this remedy is spellbindingly and unabatingly habit-forming in the most necessary of ways.
If you were to ask me “what miracle supplement”, “what guru’s practition”, “what fantastic phenomenal fifth food group”, I’d tell you it’s simple as riding a bike: go ride a bike. Seriously, go out and buy a bicycle, new or used, or unearth that mountain bike your kid neglected for the Playstation, get a helmet that fits and go for a ride every day, long or short as you like but preferably long. It’s as simple as that, and remember that no matter how long it’s been since you’ve last ridden a bike, bicycle riding is one of those proficiencies that does not fade away with time, it’s literally like riding a bike.
If at this point you’re asking yourself why, oh why, am I bothering you with all this, it’s because today I’m nine months post taper which puts me somewhere around a year since the day I started taking three, one milligram tablets of klonopin instead of four and learned for the first time that my childhood fears of poky pitchforks and devilish demons in a fiery brimstone pit were a pale imitation of the tortures awaiting me. One year ago, I was learning what crazy and crippled really felt like, despite having lived with what I thought was psychosis and disability for over ten years which turned out to be summer day camp compared to what was in store for me.
So when I tell you that riding around like a lunatic during an eclipse atop my slightly used but brand new to me Schwinn city bike upon the congested, potholed and tar-patched, ridiculously hilly streets of the fifteenth largest metropolitan area in the United States, please understand my full meaning when I tell you that this experience has been to me as if Doctor Feelgood herself had written me a prescription for Extra Strength Panacea. Take as needed. Unlimited refills.
Balance issues? Tell them to walk a plank. Akathisia? Sit on it. Gastrointestinal problems? Kiss my sweaty butt. Depersonalization? Don’t use a machine, become one. Dry mouth? I’ll huff and I’ll puff and I’ll blow this hill down. Metallic taste? Anything is the best meal I’ve ever tasted after a two hour ride. Fatigue? I’ll show you real fatigue. Weakness? That’s what coasting downhill is for. Paranoid? It’s not paranoia if the automobile drivers really are out to kill me. Derealization? The reality of a forest of giant sequoias is never-ending, undeniable, and overpowering, nothing can diminish it. If you don’t have a thicket of giant sequoias on your friendly neighborhood bike trail, the trick is to find something like it in your neck of the woods. I guarantee there is some aspect of the universe that holds court in your daily life, waiting for you to come by for a respectful visit to give grateful thanks.
You get the idea.
If you’re wondering why I don’t just get it over with and post a success story it’s because this isn’t success, this is what it feels like to be on the road to success, but it’s not success itself. I suppose one could just as easily say that success isn’t the end of the journey, instead the journey is a success only as long as it doesn’t end, but if that’s true we should all be writing success stories the day we decide to start a taper or cold turkey or when we’ve had enough of feeling sick and tired of being tired and sick, as it’s been said. I haven’t given up on the dream that one day I’ll feel well enough to believe that I’ve healed from this brain damage and recovered from the nerve damage. That some day the neural remediation will be complete and the transformational informational negotiations will have summed themselves out and solved for x, y, and z, until then I’ll still have the most precious gift you all have given me and that is a firmly-grounded hope that I will feel not just better but I will feel well.
So, if I decide not just yet to declare victory and go home it’s not because I don’t feel victorious, because I do every day as I slowly reintegrate myself into society. Every day I’m making the choice to carry on with my life, not because I don’t feel absolutely horrible anymore but in spite of this suffering. I want to be absolutely clear that this doesn’t make me extra strong or a spiritual giant or lucky or exceptional or brave, not in the slightest. If there is one talent I have it’s an exceptional desire to avoid pain, as can be deduced from my apparent willingness to spend nearly fifteen years taking a stupid medication that after the first few weeks didn’t have even so much as a palliative effect at all and eventually sunk me into a profound illness that had me absolutely convinced my neck was on the chopping block and waiting impatiently for the death stroke.
I will admit that my suggestion that you run out and purchase a bicycle is almost entirely selfish on my part. Were my scheme successful it would translate into thousands of new bike riders who would otherwise be driving or driven in an automobile who instead might spend some part of that time not opening the door into a bike lane without checking to make sure I won’t be garroted by your window or pulling out onto the road without looking left, then right, then left again. At least I have something sensible to obsess over while having my nightly panic attack, right? Though, that doesn’t stop me from wondering what would happen if all the rear spokes broke at once or if my chain broke and wrapped around the front brakes locking them up while in near free-fall coasting down the Denny Way bridge across Interstate 5, oh that’s one of my favorite anxiety scenarios that is.
It might also mean there was one less carbon-heaving monstrosity slowly but inexorably suffocating life on this oh, so beautiful planet that we’re oh, so very lucky to call home. That’s my other apprehension, the steady transmutation of our climate from cheerful sunroom to terrarium with the lid sealed shut. Call me a hippy, call me selfish, that’s okay. Just do it from your electric car and I’ll ramble on smiling happy.
While you’re calling me names, I’ll say that yes, I’m content to be crazy thank you very much. While my therapist may have an distaste for the word, I find it liberating in its ability to describe my uncomfortable past, my delightful present and my sensational future.
Has it been all sunshine and bunnies? Not even slightly, it’s been downright uncomfortable. It’s like I’ve been unknowingly dosed with a particularly strong hit of LSD except it doesn’t stop after eight to twelve hours, it just keeps being weird. Allow me to go through my journal and pick out a few choice quotes: “I feel like one of those giant African millipedes is crawling around in my gut,” “I’ve never been stabbed, but if I ever am, I hope it doesn’t hurt this much,” “You know the expression ‘my nerves are shot’? My nerves are shot in the head at point blank range,” “I feel as if my heart had been carelessly unplugged, wrung out with an iron fist, and plugged back in the wrong way.” I never realized there were so many ways to be uncomfortable.
Or maybe it’s just like I had a big cup of coffee this morning and forgot breakfast except I didn’t have any coffee and ate a reasonable breakfast but why do I feel jumpy and jittery without any good reason. It wouldn’t be a big deal if there was a reason for it but darned if I can find one, so here I am, I guess. Except what really happened is I did have a big cup of coffee this morning and I also had a pretty good breakfast and sure I’m jittery but about as jumped up as I’d be if I’d had a big warm cup of coffee so why would I even consider not having coffee if it makes no difference either way? Nothing adds up, but I’m starting to get used to that. I remember reading someone ask, do we heal or do we just get used to feeling this way, and I’m starting to be of a mind that maybe there isn’t a very big difference between the two. If the quality of life is the same, does it really matter?
I suppose I have to bring this to a conclusion, despite having said way more than I wish about too few of the topics I’d wanted to cover. That’s okay as this is a celebration and not a graduate thesis, a poem of epic length if not epic content, a literary jumbo bag of sugar cookies to be eaten passionately and forgotten quickly. It may be years before I feel well enough to consider myself past this experience but I’m not going to spend years waiting to be joyful. I’m going to steal my happiness back from the unassailable fortress in the dead of night with a robbing hood’s pluck wearing a desperado’s mask. I plan to be disrespectful and downright disobedient in the face of this intractable condition. It deserves nothing more from me so I’ll do nothing less.
Lastly, if you have a serious medical issue that prevents you from bike riding — please don’t unquestioningly believe that you can’t but ask a doctor, shaman or licensed soothsayer if there’s a style of unicycle, tricycle or millicycle that you can ride before you decide you can’t — my next suggestion would be to spend the same amount of time in wild dance, moving your body to the rhythms in your heart, groovy or gritty or both at once, as often as practicable and if you don’t believe you can dance I admonish you to YouTube to search for videos of wheelchair dancers so you can be inspired by the certainty that if you’re able to read this you’re able to dance, and dance beautifully. Yes you. You too. We’re all beautiful when we dance, it’s axiom.
To be really honest, I’m a big fan of dancing whenever I’m not biking and biking whenever I’m not dancing, except when I’m doing something even more interesting. But that’s just me.
See you in three months, friends, count on it.
(Please forgive typographic, logical and sociological errors but grammatical and spelling errors are unforgivable. Also, I’ll try to reply this time, so I look less like a spambot trying to trick your email filter, not that replying will make me look any less like that but there’ll be more interactivity.)
I’m Here to Kick Ass and Eat Parmesan… and I’m All Out of Parmesan.
June 04, 2015
How long has it been?
One year. Three hundred sixty five days. Eight thousand, seven hundred sixty hours. Two hundred ten thousand, two hundred forty minutes. Plus or minus a few hundredths of a millisecond.
Plus a quarter of a day because this year wasn’t a leap year.
Plus a day or two. Plus however long it takes to write this. The exact timing isn’t important anymore. The important part is that it’s unimportant.
What does that even mean?
It means that I’m starting to feel like it’s okay to not feel like everything is the most important thing ever. Half of the horrible feeling over the last year was that everything took on an exaggerated sense of seriousness.
In the last few months I’ve been learning that most of the stuff I’ve been obsessing over just doesn’t matter.
In your signature: It’s not June, it’s July crossed out with June written in.
Case in point.
I was crippled and crazy when I typed July. After that, every time I saw July I just passed it over without thinking about it. It’s always been June because June 2nd at 9:49 pm is what’s written on the emergency room bracelet I have as souvenir from that day I took the last “rescue” dose of valium. I put “rescue” in quotes because that bit of valium was to rescue what Google is to personal privacy.
Not that it matters.
Okay, you got me. I’m learning to stop obsessing about every little thing. It’s a process.
How’s that new bike?
I ride about a hundred miles a week, including a weekly fifty-four mile Lake Washington round trip in four and a half hours. It is, however, possible that I’m on the list of Seattle’s most wanted bicycle terrorists for my devil-may-care attitude about weaving in and out of traffic. Which maybe is a pretty big deal because the bicycle riders in this town are absolutely out of their minds for risk taking and I seem to be on the panhandle of the parabola of dangerous behavior. To go by what people yell at me from their vehicle after they lean on their horn, I should have been reduced to a wet spot on the pavement months ago.
Yet here I am, still going.
Obsessing about bike riding?
Did I mention it’s a process, you nut?
You talk about crazy a lot.
I am all about the crazy. Crazy as a box of rainforest toads. To me, crazy and sexy are interchangeable terms.
It shakes all over like a jellyfish?
Get hip, get on my tracks.
Is that smoke I smell?
Nope. Stopped smoking a year ago as well, the day after I got back from the emergency room. In the emergency room, they put this thing on your finger that tells you how little oxygen is in your blood and when you smoke you’re considered oxygen deprived: A condition which transforms beta carotene into Cancer Accelerant, I’m told. If there’s one thing I am, and I am a lot of things to be sure, many of them uninteresting though a few undeniably intriguing, some might even say naughty. If I should ever be in want of an epitaph, though I hope it never becomes a dire necessity, let it be that I was pro-carrot and unequivocally disapproving of cancer.
So not so much with the smoking anymore.
It’s true! I remember as a young whippersnapper I used to ride my mountain bike up and down the Seven Hills of Seattle, hop off at the nearest brew pub, down more than a few stout drafts of hoppy stout, smoke a few Gauloises, eat a few squares of pot brownie, hop back on the bike and ride up and down some more.
These days just a regular brownie makes me sleepy. Well, wired for about fifteen minutes, but then I’m off on a pillow and blankie hunt.
To be fair to myself, it’s not like I avoided naps in my salad days. I remember quite a few epic naps. And by remember, I mean, don’t remember at all because I was too busy, you know, napping.
Weren’t you writing a bento-free celebration?
I was! Then my nemesis Autocorrect turned it into a “lunch-free celebration” and I got cranky and rebellious.
Yes, completely benzo-free, one year. Hurray me!
Aren’t you supposed to provide helpful tips for the kids at home?
There’s no requirement to do that. Not that I’m doing well at sticking to the requirements. I’d start a blog but only if my intent was to destroy humanity through the power of run-on sentences. Humanity seems set on its course and the run-on sentences will always be with us so why fight progress?
Besides, what helpful tips could possibly help anyone get through this misery? Do you remember how I dealt with the sheer number of not just unsubstantiated but proven to be complete Doctor Oz level horse-pucky recommendations for what supplements to take and what medications to avoid and what superstitions to follow? I gave up and just started doing what I felt was the right thing to do at the time and considering how absolutely out of my mind I was for the last year it’s amazing I’m still alive. Remember when I thought slicing off my eyelids with an X-Acto knife was the absolutely most awesome idea in the whole world ever and couldn’t get it out of my mind? It’s amazing I’m not abstinent from breathing and metabolizing glucose.
If these people are anything as bananas as I have been over the last year, I’d be twice as crazy to follow any suggestions for better living that I read on an internet forum.
The “If It’s Going To Hurt, I’m Going To Give It A Reason” defense?
Exactly! That’s why buying the bicycle was such a genius plan on my part. It’s only become clear to me recently just how messed up I’ve been, just how much pain I’ve been in, just how bad this whole experience was. Sure I could have just stayed in bed for the last year. It probably would have been the smart thing to do. It probably would even have been the right thing to do.
Instead, I decided that if I was going to feel like I’d just gone on a five mile hike, I’d actually, you know, hike for five miles. To give the muscle stiffness that authentic burn. Hiking turned into biking and Lake Union turned into Lake Washington and five miles turned into fifty and now I’m thinking I’m going to need a bigger lake.
So what would you suggest?
What? To a prospective reader who might be wondering how they are going to get through another minute of this freak show on a roller coaster through a haunted house built on an ancient burial ground? You’re going to get through it because you don’t have any other choice, that’s how. You’re going to get through it because the alternative is unimaginably worse. You’re going to get through it because you got through the minute before this one and you got through the minute before and the minute before that, so you’re going to make it through this one the same way you made it through the one before.
No idea how.
But: Made it.
That’s your idea of encouragement?
I’m going to do what nobody else does, I’ve noticed, though it seems everyone’s more than happy to hand out advice about what supplements to take or what not to eat or how much exercise to do as long as it includes the standard disclaimer at the bottom of every post, I’m going to do what nobody ever seems to do here: I’m going to make you a promise.
I promise you, it gets better.
It feels like it never will. There seems to be no reason why it would ever get better. It makes absolutely no famned ducking sense. It may not ever make any sense, no promises there.
But I promise it gets better.
Yes, but how do you know?
Because against all odds, against the laws of reason and the axioms of common sense, it got better. Who knew?
Well, the thousands of people who came before me knew and they all said it would get better. I both believed and didn’t believe them because I needed to believe what I couldn’t believe.
What’s the important thing?
The important thing was that my belief wasn’t important. It was not necessary for me to believe. It happened anyway.
That’s how religion should work.
In a perfect world.
What’s your point?
This isn’t a perfect world.
You can say that again.
This world, she is not perfect.
Very funny. Any more bright ideas?
Eat real food.
Go outside and play.
Be better to your neighbors and you’ll have better neighbors.
Life is uncertain, eat dessert first.
I’ve always tried to live a life without regrets. Realizing that style of living might lead to a life that could be accused of not having been pushed the limits of awesomeness (though anyone who really knew me would realize what a ridiculous charge that would be) I’ve decided to specifically seek out experiences that will lead to the highest possibility of regret and embrace them in an attempt to have more than a few really epicly fantasticly regrettable regrets.
So, I’m good.
Still, who knows what the future might bring? The possibilities feel limitless.
So all better?
I still feel weird. Sometimes just plain awful. Twitch, itchy, glitchy and occasionally pinchy. My on button feels like it’s stuck on “on”. Everything feels like it’s being magnified, like seeing everything through a microscope even when it’s not necessary… especially when it’s not necessary…. everything’s all blowed up big whether I like it or not is what I’m trying to say.
So, not all better. But not convalescent anymore. That’s good, right?
Convalescent means recovering.
Maybe that’s where I diverge a bit and don’t feel so much like this is healing but instead adapting. It feels more like I’m adapting to a set of circumstances rather than recovering from an illness. That’s just how it feels to me.
So, no Success Story?
The moment I no longer feel revved up like a Vin Diesel movie marathon you’re not going to have to read about it, you’ll hear me woohoo-ing on the other side of the planet.
What’s your favorite Success Story?
My favorite Success Story goes like this, “I didn’t take supplements. I didn’t exercise. I didn’t do anything special. I got better anyway.”
I don’t remember who wrote that, but it was the wisest thing I’ve ever read on this forum. Quite possibly the wisest thing I’ve ever read, ever.
Any parting thoughts?
I’ll just let my actions speak for themselves.
A-lonely but for Those of You
June 06, 2015
I’ve always had the soul of a poet. It’s coming up with the pretty words that’s the difficult part.
One of the saddest outcomes from this whole experience, I imagine, is that for the rest of my life I will never meet anyone who is going to “get” me the way I know people here comprehend. I quite often feel like my inability to really capture this experience in words to be a great failing, but I’m starting to believe this is one of those things that “you had to be there” to understand.
They say that comedy is tragedy plus time. There is no shortage of tragedy in this whole process and time happens.
Some day, we’ll all be looking back and laughing.
It’s simple mathematics.
Benzo Withdrawal Is Like…
November 13, 2015
This whole experience has been like being forced to watch a torture-porn horror movie; shown in a burning theater; tied to a rickety, sharp-edged chair infested with fire ants; on a crashing airplane; into an ancient burial ground haunted by restless vengeful spirits; in a harsh language I can’t understand, with the sound too loud, and subtitles just good enough I understand the evil being done but otherwise so bad I wish I didn’t; with a crowd of discontent ex-lovers, school-playground bullies from my childhood, one-time bosses and high-school teachers and step-parents, all as unhappy to be there as I, but blaming me for their plight and showing no signs of holding back from carrying out some of the more creative onscreen violence on my person….
Sort of like that, but much, much worse.
And lasting way longer than I thought it possibly could.
And when it all ended like a bad dream, I awoke to find myself alone, with no one to celebrate my escape.
What a Setback Feels Like
February 02, 2016
I just got back from running, so I’ll describe the “setback” from that and maybe that’ll explain. In December when I first started running, I made it maybe a half mile before I had to stop and rest. I was gasping for air, my muscles had locked up and starting to spasm, I was having looping thoughts and panic. So, I started walking because I told myself I wasn’t going to give up. I walked for a couple blocks, the pain was intense, but it started to let up a bit. I started running again, slower, more carefully, but running and focusing on calming my breathing and moving my body even though it was screaming at me how much it didn’t want to move. I made it a few more blocks and again, I was locked up and gasping and panicking. I had told myself I would run so far, turn up the hill, and then make my way back home. I kept my promise to myself. I was slow, I was in pain, heck, I didn’t even run the whole way, but I made it back home and I no longer felt like I was going to die, even though I was still in pain, I felt like I had just jumped over the moon.
What I did was idiotic, and I wouldn’t advocate anyone else do such a stupid thing. Exercising through such intense pain could lead a person to permanently cripple themselves. I spent ten years in a wheelchair because of clonazepam, I already knew what that was like and I couldn’t go back to that. For me, the only direction to go was full-throttle in the opposite direction.
In the two years it’s been since I’ve learned how to walk again, I’ve had four or five run-ins with setbacks of muscle-lock-spasm that left me sure I’d never walk again. Initially, I’d spend the time in bed but I’d have to limp out to the grocery store a half-mile away — I don’t own a car — every day or two. I couldn’t give up or I’d starve and I wasn’t about to starve. By the time running locked me up after my first week of running, I was able to keep running — gritting my teeth the whole way — through the pain, feeling my way though it to find even a tiny bit of calm on the other side. In this way, very carefully, I was able to get myself to a place where I can see progress every single day instead of every six months, if that.
I still get muscle lock when I run, still get looping thoughts and panic attacks, my limbs burn and twitch and tingle and vibrate; but I zero in on those feelings, wrap them in my arms and hold them close, whisper in their little ears that they’re not welcome in my life anymore and then I hold them out in front of me and let them drift off into the big blue sky. That’s what I did with my pain and my panic today.
Maybe this is completely useless to anyone else. Maybe I’m just incredibly lucky. Maybe I’m a special snowflake and there’ll never be another like me. Maybe. I’d love to honestly say that the pain and loss I’ve experienced were less than anyone else’s, because I would love to have my life be easy to navigate, just this once. I can’t honestly say that, though, because I had to work my way through such a hell that I thought only people here could understand it. I’d hate to think that somehow the horrors I’ve endured were only a pale imitation. It’s quite true I’m only twenty months out (oh wow, today is my twenty month birthday, heh) and I’m sure if it were forty months I’d feel differently, but when forty months comes for me, I want to be able to look myself in the mirror and know that I did everything in my power to feel well.
It’s not our fault we got sick, but recovery is our responsibility. I won’t be able to determine the course of this illness, but I have every intention to decide my treatment plan. I believe that no matter how I feel at forty months if I get there knowing I tried my hardest to get well, I can hold my head up high and feel okay about where I am. Feeling well doesn’t only mean feeling good.
Getting well takes time, that seems to be an incontrovertible fact, and no one is able to say why one person takes longer than another. I have to wonder if maybe we should start up a 12-step-style conversation where we discuss the merits of admitting that we are powerless over this illness. Maybe admitting that would bring people to a place where they can find some peace with these symptoms. My gripe isn’t that people are having setbacks and symptoms and bad days and waves without windows, but instead the complete sense of hopelessness that seems to come with it. Hope doesn’t have to be a promise that tomorrow will be better, it’s just an acknowledgement that today isn’t the worst thing that ever happened to anyone ever and that it’s worth seeing what the future will bring.
As far as food goes, well, my gut feels perma-destroyed and anything I put into it seems to bloat me like roadkill and smell twice as bad at the other end, so I just keep shoveling stuff in and hoping for the best. Some days it feels like a Success Story just getting out of bed in the morning. Today, I’m okay with that.
I’m not sure if this is helpful, so feel extra-free to completely ignore me for saying this, but some of us are working on the theory of actually trying to trigger these types of reactions so our bodies can acclimate to them. The theory being a riff on that what does not kill us makes us stronger, some of us (and I’m possibly just talking about my own crazy self here, so again, grain of salt) believe the way out of this is straight through the most difficult path. Instead of running from the painful bits, standing up to them and facing them.
What I’m finding for myself is that by doing this, eventually, it goes away. Now, the question is, would it have gone away on its own in the exact same amount of time? That I can’t answer which is why people should totally ignore me. All I can say for myself is that I’m tired of being a passive part of this process. Even if all I’m doing is making it more difficult on myself, at least I can know that it’s only going to make me that much stronger in the end, if not necessarily any wiser.
I wish there were an easy way out of this. It’s not fair what’s happened to us, that we had difficulties in life that we couldn’t manage on our own, that we asked for help (which for a lot of us was a difficult step), and then the help we received made us a severly ill and without recourse. One might even question if maybe somebody up there doesn’t like us.
You’re going to make it though. Hang in there.
Can Benzo Withdrawal Cause Brain Damage?
February 20 and 27, 2016
We just seem so susceptible to thinking this is going to be permanent. Then when we come to these places we see other stories of people talking about how they think they’re permanently damaged. It’s like a mass psychogenic illness.
It makes me sad that there doesn’t seem to be a good way to spread the word that this isn’t permanent because someone always comes in and says, “but what if I’m different!?!?” Sometimes I think even if there were hard science proving it isn’t permanent there’d still be doubters.
What got me through the worst of times was just saying to myself, “if this is how it’s going to be, then this is how I’ll carry on through life. It’s better than I ever thought I’d get, so I have that to be grateful for. There are people who have way more difficult lives than me to lead. I will be okay.” I hope everyone can find their own version of that to get them through the hard times.
I think a lot of people forget that one of the symptoms of this illness is being resistant to hope. When that symptom is active, no amount of truth is going to change the conclusion that the end is nigh.
I wish I knew how best to steer people away from the edge of the cliff when they get like that. Nothing could save me when I was there, and I suffered through that for over a decade while I was in tolerance withdrawal. So many people gave up on me and I didn’t even care, but I look back on it now and weep.
Exercise Support Group: Notes to someone else suffering
February 19-22, 2016
The way proteins work in the human body is that we eat them and our gut breaks them down into their component amino acids. Then our bodies turn the amino acids back into the proteins we need. We certainly need to eat proteins so we can get the benefit of their amino acids, but they don’t go “straight through”. If there is a problem making proteins from amino acids, we can’t short circuit the process by eating the proteins themselves.
But, people on these forums report good results from supplementing their diets with proteins and amino acids. It might be a good idea to do a search for a particular protein or amino acid you might be interested in taking. Also, check out the General Health & Wellbeing and the Alternative Therapies & Supplements forums. Remember that what works for one person won’t always work the same way for another person because we’re all individuals and we’re all at different places in our recovery.
Sometimes during a “wave”, the physical and emotional symptoms can feel a whole bunch worse than usual, so it’s entirely normal for emotional symptoms to feel worse at the same time as physical symptoms. Someone posted that exercise releases extra cortisol and so sometimes exercise can temporarily make us feel a little worse than usual, emotionally and physically, so you’ll have to weigh the benefits of exercise against the possibility that sometimes it can make you feel a little worse in the short term.
As for me, I still have a lot of pain and stiffness but it’s a bazillion times better than it was even two months ago and a whole different universe away from how I felt a year ago. I started walking again [after not being able to] in December of 2014 and it was insane how much it hurt, but I had akathisia so badly that I had to do something with myself. In February of 2015, I bought a big heavy Schwinn city bike and started riding that around Seattle. It was crazy painful at times, and I have vague memories of having really severe muscle spasms while I was out riding around Lake Washington and having to keep going because I couldn’t get home otherwise. Things got a lot better the longer I rode. In December of 2015, I started running. It was intensely painful. Today I ran my fastest three miles ever. I still get pain and sometimes it can be a real struggle, but I keep getting better and feeling better. To be completely honest, in the last two months I feel like I’ve come farther than I have in the previous eighteen, but I still have a ways to go.
Last thing, always remember that a big component of this illness is being extremely excited at all times and that this will often present as anxiety. Take lots of deep breaths. Do your best to use your rational mind to check your emotional state and assure yourself you’re safe and sound. It’s okay to be afraid, being afraid can’t control you unless you let it. We decide how we react to this illness.
You face the fear every morning the same way we all do: reluctant, frustrated, resigned. Same way we wake up to clouds and rain in the morning when we expected sun and warmth. We get up and we deal with what’s in front of us. You’re dealing with what all of us deal with and it’s very, very difficult, but I promise you, it can be done. You have the strength to handle this.
One concern I have is that it sounds like you think this therapist is going to “cure” your withdrawal symptoms. I mean, maybe. If she does, you be sure and come back and let us know, because we’re all going to line up outside her office to be next. It would be a miracle. So far the only thing resembling a cure has been sitting around freaking out, watching Netflix, and bursting into tears for no good reason. Eventually — for some of us, it takes years and years — we get better.
The therapy you’re doing may help alleviate some of the pain, and I hope it does, but please temper your expectations.
It sounds like you’re having a rough time. You sound almost exactly like me last year with your anxieties. Sometimes, still today. The worst thing about this illness is that it doesn’t feel like it’s an illness, it feels like some other illness. It almost always isn’t.
I went out for a run this morning and just felt horrible the whole way. So slow, not really painful, just tired and dragged out. I had to stop several times for breath, had to slow to a walk to get up some of the hills. The whole way my brain was screaming at me that this was exactly how it was fifteen years ago, that I was going to become a cripple again, that is, if I didn’t have a heart attack right there on the trail.
Got home and Runkeeper informed me I’d just run my fourth fastest five miles.
Which is to say, the stuff that goes on in our head, because of this illness, is just not what’s real.
I keep saying this and I mean it: It gets better.
It seems like you’re doing a lot of searching for ways to make various symptoms go away. I totally understand why you’d want to do this, but can I caution you that it might not be the best use of your energy. I remember early on how hard I’d try to make the symptoms go away, how I’d feel like such a failure because whatever I tried I couldn’t make the symptoms go away, even ones I could temporarily abate, they’d always return. That’s part of the illness. I don’t want to tell you not to try, just to temper your expectations. What heals us is time.
I know I’ve said that I think exercise has helped me get better quicker, and that may be true, but I can’t say for sure. It’ll be one year and nine months for me in a week or so, which is right about the time when people say everyone heals, at just short of two years. So, it’s entirely possible I would have been feeling better around now even if I were eating Twinkies by the box and my most strenuous exercise was flicking through my Netflix queue.
The best success story I ever read basically went like this:
I didn’t exercise,
I didn’t eat well,
I didn’t take supplements,
I got better anyway.
I don’t remember who wrote it, and I wish I did, because it’s really the most insightful post I’ve ever seen on Benzobuddies. We expend so much energy trying to run from these symptoms instead of doing what would probably be the most helpful thing, which is learning acceptance and how to find gratitude in the most difficult of situations. Plenty of people turn to antidepressants and antipsychotics and find some comfort there, only to find they have years more struggle to undergo when they try to free themselves from those medications.
What I did for myself was to say, “okay, I’m going to do this today not because it’s going to make me better, but because I enjoy doing so.” Whatever it was, going for a bike ride, running, eating a box of cookies, smoking marijuana, taking a nap. I don’t want to tell you what the best path out of this wilderness is for you because that’s something you’re going to have to determine for yourself. All I can say with any certainty is that it’s likely to be a long journey, so your best bet is to steel your determination and settle in for a rough ride through the storm. But you’re going to be okay. Plenty of people have made it through just fine and so will you.
Or, I’m totally wrong and you shouldn’t listen to me because I’m nuts. That’s entirely possible, in fact it’s pretty likely.
It’s Spring and that makes me a little giddy. Happy early Spring.
Earthquakes and Crazy Things
March 02, 2016
Happened to me for the first month or so after I jumped. I live in an area that is prone to earthquakes, and it really felt like one. I had the shakes really bad for the first year and still have a little tiny bit of vibration.
I had a home care provider back then [when I was on Clonazepam] (I was really, really sick) and I would tell her the next morning, “We had an earthquake last night,” and she’d say, “No, we didn’t.”
I guess after a couple weeks, I got the message that maybe we weren’t really having that many earthquakes she wasn’t telling me about.
Pain makes people do crazy things.
They’re still crazy things, though.
March 09, 2016
I go to that place myself a lot, just wanting a job where I can work outdoors and not have a lot of demands made on me that I’m not sure if I can meet. I’ve been unemployed and unemployable for twenty years, so it’s difficult for me to tell what’s really going on. My doctor told me once that “being disabled disables people”. I know there’s some amount of this that was caused by either the benzodiazepines, or more likely by our weird reaction to the benzodiazepines, or maybe a little of each; but I can’t deny that there’s a component of this feeling that doesn’t seem like it has anything to do with benzodiazepines at all.
Knowing what it is doesn’t really help if it’s a thing that’s going to be sticking around for a while. We have to pay the bills today and every day in-between now and when we write our success stories. That can be incredible challenge and I don’t see a whole lot of solutions, not even for myself and I feel like I’m breezing through this compared to some. Hope doesn’t buy me broccoli, gratitude doesn’t give quarters for laundry, strength in the face of adversity doesn’t pay the rent.
But I ain’t going to lay down and die. I’ve come too far, worked too damn hard for what I have, to give up now. I know we all feel vulnerable during this illness and we all need to feel like people not just tolerate us but understand us. I don’t begrudge anyone their bad days and I hope y’all don’t begrudge me mine.
I think I know why people who recover tend to not come back to these discussions very often. They say we have empathy because of our mirror neurons, that when we watch someone else do something, we can relate to it because we replay what they’re doing in our own minds as if we are having the experiences ourselves. I can see myself doing that when I read what people’s are going through and I find myself reliving some really awful experiences I thought were long past. It makes me cranky and upset and I’m not sure if that’s particularly conducive to being a supportive person. I don’t know what I’m going to do about that.
Two Years and a New Perspective on My Life
June 01, 2016
Tomorrow is two years to the day I took a “rescue dose” of a sliver of a diazepam because my doctor asked me to in order to determine if I had tapered too quickly. I had, of course, but it didn’t help. What helped was the two years since then. Two years ago: I couldn’t walk, I couldn’t think, I had no future, I was ready to die.
This would probably be better off in the Success Story forum, but I’m putting it here because for the first time in my life I am asking myself, “But what if I feel even better tomorrow than I do today? Is it possible to have success and then greater success?” Apparently, the answer is an unequivocal, “yes, oh goodness yes.”
Maybe I don’t put it in the Success Story forum because I think I might have had fibromyalgia for a big bulk of this time instead of benzo withdrawal. I’ve read some musings here about the possibility that fibromyalgia is just what doctors call benzo withdrawal for nefarious purposes. Maybe. Or possibly benzo withdrawal is such a traumatic experience for some of us that it kicks off a bout of fibromyalgia. Maybe that’s what protracted withdrawal actually is, which always made more sense to me because withdrawal so far out from cessation seemed a ridiculous concept.
Whatever it is that I’ve gone through over the last two years, a great deal of it is gone and even the memory of it fades like a bad dream. What I recollect and from reading my journals, I gather it was a pretty brutal experience that I am absolutely amazed I survived. I go to Narcotics Anonymous meetings and I listen to people’s stories of when they were abusing drugs and the people whose experiences most closely match ours seem to be the ones who have used crystal methamphetamine for an extended period of time. The levels of paranoia and panic and complete unreachability seem similar. I have one vague memory of building a fort out of my bed frame in my living room a couple of weeks into acute because I was so afraid of people climbing into my windows. That’s all long gone, in my past, something I never have to experience again.
I still have pain, mostly in my lower legs and feet get; I get the cog fog, occasional dizzy spells; I have social anxiety and a vague sense that I’ll never be accepted into society again. None of that stops me from living an active life, learning new life skills, having a vibrant social life. I’m stronger than I’ve ever been before in my life, including pre-benzos, I rode my bike 674.5 miles last month; I’m undergoing vocational rehabilitation to get back to work again after being unemployed for almost twenty years; the people in my life tell me they genuinely care for me and love me and I believe them with all my heart.
So, my life today is an unqualified freaking success; straight up, no chaser. Happy birthday to me.
Don’t let anyone tell you any different, your life can be better than it was before benzos hurt you. It’s not easy, it’s hard work, but it’s so very worth it.
Three Years, Six Months
December 03, 2017
I guess it’s been a little while since I’ve posted here. I check in occasionally, to remind myself where I’ve been and get grateful for where I am. It’s good to see a lot of familiar faces and it looks like everyone is progressing well. I’m really happy to see so much healing.
I wish I could be posting this in Success Stories, but I set a really high bar for my own personal success. That’s what I needed to do for myself. But that’s not how I started out thinking about it. I started out with really simple goals and that served me really well. As I continued to progress, I got to a place where I could ask for more. I think that’s been really helpful for me, never wanting too much, so I can always see progress. It’s so difficult to see progress sometimes, so strategies for finding it are super-important.
In the last year I’ve found work — challenging work; physically, intellectually, and emotionally. I’ve maintained friendships and reconnected with people from my life from before I got sick. I’m stretching my mind by learning how to write software, play piano, and I’m starting a business to do audio and video production. I not only am getting my old life back, but I’m starting a new one where I’m doing things that I never thought I could.
I still have a lot of pain, most of it physical. I’m not sure how much of it is benzodiazepine withdrawal related, though. When I was on benzos, I had a lot of co-morbidities. I had diabetes, so it’s possible I am recovering from diabetic nerve pain. I get it in the gut pretty bad as well. I take solace in knowing that since I don’t have diabetes any more, I’ll recover from that as well. It just takes time. I had diarrhea for the whole first three years and that’s only started to change in the last three months.
I am stressed out and revved up most of the time, but it’s not as bad as it used to be. There are a lot of ways where I was a pretty stressed out person before I got ill, so sometimes it can be difficult to separate what’s me and what’s not. That’s okay, I try to live by the motto, “be the person I want to be when I’m better”. I act the way I want to be and accept that I won’t get it exactly right, but as long as I’m trying, that’s okay. We can’t get better if we don’t make mistakes, so making mistakes is a good thing. Little stuff like that helps me not freak out.
It’s all little things now, even though sometimes they can feel like big things, they’re nothing compared to what I’ve been through. I can look back on just how horribly sick I was and I’m amazed I made it out. I was severely mentally and physically ill when I was in tolerance withdrawal, during my taper, and especially my first year or two off benzos.
Yes, sometimes it feels “just like acute”, it can still get pretty vicious. I’ll survive it. I survived and got here, I can wait it out.
I get lots of exercise. This summer, I rode my bike from Seattle to Ellensburg and back: two hundred and thirty six miles over four days. Four years ago, my doctors and I thought I’d never walk again: I’m doing pretty good.
Life is wonderful and it just keeps getting better and better.
Hey, I can poop like a normal person now. Life is amazing!