That’s my cry. Believe us. I want people to listen to and understand benzodiazepine withdrawal sufferers when they ask to be heard.

I am now a number of years post cessation yet I have still sharp memories of my excruciating Klonopin withdrawal experience. When we beg family and friends to listen to us,  to hear what we know, to listen to our accounts of an unending visit to hell, to listen to our pleas to somehow return to us our lost lives and selves, please believe us. Understand that you and I and nobody on earth were meant to experience this pharmaceutical nightmare.

It might be asking too much to expect empathy.  Unless you’ve gone through benzo withdrawal, you know nothing like it — this unnatural torment sent from hell and the the darkest, coldest, most cruel corners of the universe. Though I’ll add — if you have had a difficult time with other psychotropics, then, yes, you likely have more than a clue. Or, if you have been prone to experimenting with hallucinogenics and had a bad LSD trip that consumed your consciousness for days or weeks afterward, you might have an inkling. Sorry to learn this, but I’ll take your empathy gladly and gratefully. 

it has been over sixty years since the arrival of Librium. Consider that it has been over fifty years knowing that Librium’s stronger, more devious sibling Valium was marketed to the masses. Despite a growing awareness of the dangers, benzos are still being prescribed as a long-term solution to anxiety and insomnia and more — seizure disorders, concussions, infections, pain, tics, rashes— the list is long. And very disturbing. Off to the pharmacy you go, to address discomforts that doctors hither and yon decide is worth the risk a benzo pill poses. Most physicians know that benzos have hazards. But prescribers are eternally excusing themselves, preferring to provide a quick fix and short-term reprieve to their trusting patients, too often dooming them to a long sentence in benzo hell. 

Do people think we are lying? To what end? For attention? What comes of that? What do we gain? Just a lower opinion of our already crumbling self-esteem. You know the expression “you can’t make this shit up?” It applies. Why would anybody want to feel this way or want people to think that they do? There’s absolutely nothing to be gained.
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So, you see, this is what I’m imploring you to do: Believe us. Because things need to change. Let’s start with the prescribers. We need doctors to stop prescribing benzos long-term and to protect those who are already on them. Dear Doctors: Never, ever force a patient to stop abruptly. Leave it to the patient to decide when to come off. Provide your patients with informed advice and help them taper safely. For personal crises, such as mourning after a death, go ahead and provide a prescription for 1 week. Keep in mind: those prescriptions can lead to PRN  prescriptions. A risky proposition. PRN intake cast many of us into the abyss of benzo tolerance and withdrawal. Make sure to direct your patient not to take more than 1 or 2/month with additional weeks in between doses taken. A radical idea? If you know benzo hell, you know that this is the advice many of the iatrogenically harmed wish had been given before our doctors told us not to worry, told us we're not abusing them, told us they’re safe, blah blah blah. And, Doctors, check on your patients. Learn the signs of interdose withdrawal. Learn when a patient has reached tolerance and then learn how to guide them off safely. If they so choose. Because nobody should be forced off. You started it. You prescribed them into this nightmare. This is no ordinary drug cessation. Make sure they have the prescriptions they need to do a safe patient-guided, symptom-based taper. Make sure their math has been worked out because, for most, even simple math is elusive during withdrawal. Understand that they are living in a hell that you or a colleague created. Take responsibility. 

Also, initiate research into studies that ask why benzodiazepines damage some of us badly yet leave others well and unharmed. As many as 50% experience adverse effects. And 50% seem to do fine with minimal or no problems. Do not discount the population that suffers serious damage; a percentage within that group (as high as 20%) continue to  experience frightening symptoms and life-changing disability years beyond benzodiazepine cessation.

I do not want to lose sight of ordinary life suffering. I honor that. Panic attacks and incessant insomnia are disruptive, and I cannot blame anyone for seeking remedy in a prescribed medication. In fact, some do well on benzodiazepines. I do not want to deny that. We all want healthy minds and bodies. I am just advocating for what I see as a better way. You see, I would like to see everyone protected from potential harm. I would also like to see everyone heal from their suffering — whatever the nature or cause. 

Trust me, in many ways I am still a mess. Life is not easy. I meditate daily and continue to work on my vulnerable systemic health with a focus on what the earth provides. Fresh foods, herbs and botanicals. Fresh air and sunshine. Brisk long walks in the woods with my dog. In the coming year or two, I hope to continue venturing out not only into a post-Covid world, but a fully-lived post-benzo world. 

I am heading out shortly. On my way to a favorite trail, I’ll be popping my ballot in a mailbox. How strange these days continue to be. Though, for me, I adjusted to the isolated life during my taper. How strange that Covid has given to the benzo-injured easier access to voting. Agoraphobia, akathisia, the inability to drive or even walk, the impossibility of waiting in line, entering a building, and managing the mechanics of voting — a horrid thought for the benzo unlucky. But this year, the voting system is working in our favor; our ballots arrive in the mail. Hope you have yours. 
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Here’s mine.

Please vote.

(If you need help getting your ballot in, let us know at hellogobbo@gmail.com and we’ll try to find someone in your area to help.)



Next blog coming soon. Filming During Covid: As Prescribed's Epilog Shoots

Let me say, I am glad to know that some going through benzo hell do enjoy the support of family and community. That support is not common enough. Too few understand what a benzo victim suffers while
in tolerance, during a taper, or in protracted withdrawal. When I was tapering, I had no family close by and did not have the support of my community. That made things unnecessarily difficult. In a better world,  we would all enjoy the support of our families and communities. At the time, I did not dare tell my daughter what was going on. That would have been placing a terrible burden on her. Plus, it would have further emphasized our outsider status in our town (me, a single mother; her, an adopted child — a questionable combination for small minds). Note: We have since moved from that town I am happy to say. 

Looking back, during the 22-month period that I tapered, my then elementary-school-age daughter sometimes asked if I was all right when it was clear that I was not — like when I was driving and unable to take left-hand turns or navigate traffic without panicking. I had my prepared answer her protect her from the truth. My thyroid. Oh dear, my poor thyroid. And I would tap my neck, as if patting my delicate thyroid gland. 

That wasn’t too far from the truth, of course. I was, without a doubt, dealing with serious benzo-created HPA Axis dysfunction. Oh my poor HPA Axis, I used to lament to my doctor. It should not have surprised me that I would end up with thyroid problems — first hypothyroidism and now Graves’ disease. Both are a piece of cake compared to benzodiazepine withdrawal. Again, I am not complaining. 


Fortunately, I am now able to discuss my benzo experience openly with my daughter. I survived it without her having to deal with undue shame or confusion. I so passionately hope that she is never convinced to take a benzodiazepine, or any pschotropic drug, for that matter. So far, so good. And she assures me that she won’t be seduced. She has spent her teen years listening to my spiels about prescribed drug dangers, my conversations with benzo sufferers and survivors, and my deliberations with As Prescribed’s editor Cam as we discuss editing theoreticals. 

After a brief interruption while Cam exited Brooklyn in hopes of escaping Covid, we have resumed the film’s edit. Cam was able set up shop in a relative’s home near Boston. He wanted to get his kids out of the city, so his mom cleared space in her home for a family of four. Isn’t this typical of Covid days — families being supportive, welcoming kin for the duration, staying safe with loved ones? I must say it again: Too often benzo sufferers receive no support from their families. Too often they are met with anger and resentment. Too often people do not want to learn about the nature of iatrogenic benzodiazepine illness and disability. Too often the benzo-harmed are kicked out of their homes, forced to endure some twisted version of tough love, treated like hopeless drug addicts. Of course, I, like most, feel a distinct unease about our Covid times. At the same time, I keep a close eye on the lower-profile epidemic of worldwide benzodiazepine misprescribing. 

Cam is now as committed as I am to completing As Prescribed. The more he learns about what our filmed subjects have gone though, the more determined he is to keep our work process going. At this point, we know the direction our film stories are taking. We’ve logged and studied and experimented with hundreds of hours of footage. We know it well. We are using basic desktop file-sharing platforms to edit remotely. Earlier in our edit, this would not have worked. In this respect, time is on our side.

With a combination of patience, resourcefulness, and luck, most of us will get through these Covid-Days. I hope that you make it through this challenging period without Covid touching your life directly. I hope that you are able to survive the economic hardship, and that life after Covid is kind to you.  If you are a full-fledged benzo person, I imagine that there is much about our new normal that feels already-too-familiar to you. I see this as such a strange irony. We have been suffering though our own pandemic. Our benzo pandemic has been going on for decades. We can try to make that point to others. But will they listen? I remain steadfast in my belief that As Prescribed will be completed and that the film will make a difference in the world. Our voices are going to be heard. And change will follow. 

Stay safe. Stay in touch.

With love,
​Holly

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I don’t always remember my dreams. And I rarely try to. I’m so attached to my conscious dream of many years, which is the dream of enjoying good health. If I’m feeling at all healthy, I’m happy. I’m not searching for more. I spent too many years trying to understand why I was chronically ill and growing worse with inexplicable pain, cognitive challenges, mystery gastrointestinal problems, and confusing anxiety issues. Then I discovered that doctors were continuing to prescribe a neurotoxin for me that was taking me down gradually and possibly irreparably — originally to slow my system  (junk science) when I had CFS/ME and once recovered, to give me, a lifelong insomniac, the false impression that I was getting a good night’s sleep occasionally — because it was never a good night’s sleep in the clinical sense. Not with Klonopin (aka clonazepam). That’s just not clinically possible with benzodiazepines and Z drugs like Klonopin, Ativan, Ambien, Lunesta, and Restoril. 
After my recovery from CFS/ME in the late 90’s I could not mask the symptoms of the new mystery illness I was developing. One doctor convinced me that I had chronic metals toxicity, so I treated that off and on for a few years…until that diagnosis no longer made sense. I’d detoxified, demetalized, drained and dripped till the diagnostic tests indicated that I was undoubtedly free and clear of toxic heavy metals. Really, if that was the problem, please explain why I still felt so ill much of the time. 


From that point on any practitioner I saw had an easy time chalking my problems up to stress, a resurgence of CFS/ME, or continuing post 9/11 PTSD. To a point, I had been dealing with 9/11 PTSD in the early 2000’s. I can now more easily recall the day and when I veered into PTSD mode. Yes, I had been shaken by the rumble of the first jet’s flight path in front of my living room window; and yes, after reaching family members to tell them I was okay, I headed up to the roof to watch in disbelieif as another over-thousand people died when the second tower fell. But that was not it. It was the fact that I, thinking I was going to prove that we, as Americans, keep going, walked the five blocks southward to my office on Greenwich Street, determined to work that day, to prove American strength. Still passing “snow people” escaping the towers, I crossed the Canal Street barricade and headed to Vesey and Greenwich, where I exchanged a few words with others loitering in wait on the corner. On guard was a clutch of first responders, NYFD. Standing with purpose, all were visibly on edge. Building 7 was in everyone’s sights, burning. I walked up the steps of my office building to unlock the door. The company lieutenant shouted “Run!” Collapsed and now a burning tidal wave of fire-hot debris and molten steel, hoping to crush everything in its path, Building 7 charged toward us. I ran with the first responders, members of the NYFD brave who knew that many of their brotherhood were already gone. We ran together. We ran like hell until we made it the few blocks to Canal Street. I felt a body shift that was nothing like anything I’d ever experienced. Parts of me shifted within. It was a lateral, basic, powerful, undeniable shift. And it was not good. That much I knew. A welcome stranger and I grasped on to each other, held each other, clung to each other. After a few moments we disengaged, stared knowingly at each other, as though in a preternatural state of understanding, fear, love, and relief. Then we walked away. We simply walked away from each other and from all the others who ran from Building 7, toward our separate responsibilities, destinations, and lives. 

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As part of that change dreams tend to change. I have natural sleep now. I don’t know that I’ll ever get used to my new normal of regular sleep and dreaming. As a rule, I don’t care about remembering specific dreams, I’m just so grateful to be having them. Though I have to laugh a little about a recent dream that bears mentioning here because it relates to As Prescribed’s funding hopes. The dream…

The value of the funds we need to finish As Prescribed are encased in a football-size imperfect globe of precious metals that is worth enough to take care of all our financial needs. It is clear to me that we need to hide the stone in a safe place before we can store it safely. We plan to deliver it to a bank and arrange to have the value exchanged for the dollar amount. We are living in a dangerous place. Are we in a war zone? 

Perhaps it felt like that because I’ve been reading Samantha Power’s Education of an Idealist and am also thinking of the psychiatrist we filmed who was finishing school in Serbia just around the start of the 1990s Balkans war. 

Our building has decent storage in the basement, so I am able to hide the precious metal deep within a large rolled-up carpet of recycled newspapers and hide it there for the time being. I have an accomplice. I cannot picture who it is now; in the dream it felt like a member of the As Prescribed film crew. This is tense stuff. We are in dangerous circumstances and we know it. We wait anxiously for word that our precious metal globe can be moved safely.  

The day comes when things seem stable enough to transport the orb, our hope, without incident. I unlock the door to the storage room. The carpet roll with our treasure is gone. I am panicked. I call the building’s custodian who tells me that he had been storing a number of similar-sized recycled newspaper rolls in another building, and, having access to our storage space, decided to do us a favor and sell all the recycled newspaper rolls to a firm in China. They are all on a freighter to China, including the glittery globe, the answer to our funding needs. But is China still taking our recycled newspapers? I ask. And, dream logic — yes, absolutely, I was informed. Needless to say, I am crestfallen. I want to vomit. 

I woke up.

So here we are…

Since I had that dream, we ran a successful fundraiser on Facebook raising $1500.00 from generous supporters on FB. We are now incredibly fortunate to have a generous couple of means, who believe in the film and our cause, make a large donation to As Prescribed through our fiscal sponsor, Women Make Movies, this holiday season. This will cover close to 25% of the funds needed to finish. Another large donation from a charitable fund is expected to reach us by year’s end and that will will cover another 15% of the total needed to finish. So we are close to having half of the funds needed not only to finish the film, including the cost of animations and original music for our soundtrack, but to cover all initial marketing with a festival release plan.

I usually face our need for finishing funds as a grim reality. But this year, the outlook is bright. It’s better than the dream, in fact. Oh, and I’m feeling pretty healthy this holiday season too. 

Wishing the same to all who read this. Though I know that too many are still suffering, still living the benzo nightmare. May you all wake to better days soon. 

With love,

Holly

Join our dream. hellogobbo@gmail.com

Stay in touch with us. hellogobbo@gmail.com

I’m on the other side of my 5th-year anniversary after saying good-bye and good riddance to clonazepam. Wednesday, April 17, 2019, marked the fifth year that I’ve lived without the cloud of doctor-created illness hanging over me and living inside me. That monster, that benzo beast that snuck into my life and stole too much, is gone. For the most part. 




While the first signs of healing were bright and clear — for example, the ability to see and appreciate the blueness of the sky and the sublime sound of well-played jazz — as I roll into the sixth year, the signs of healing are more subtle and perplexing. At their best, they feel like a nod from the universe that I belong in the world again, that I am okay. And I am so grateful. Nevertheless, I am not like the former me that I hoped would return. To my regret, I have  a new kind of anxiety experience and a sort of PTSD that is very much a post-benzo-post-concussion condition. I still have trouble forming words, making sentences, and carrying on a conversation more often than I’d like…but not all of the time. And that is a huge improvement. Now, even if post-benzo and concussion symptoms have merged or overlapped, I can state without hesitation that I do feel 90% healed. Sure, I’d like to be at 100%, but I’m not certain that is possible, and I now believe that it does not need to be possible. 


The Gobbo Films crew and I began production on As Prescribed reasonably early in my post-taper life. I was still struggling with akathisia, and on the ride to Boston to film benzo survivor Geraldine Burns, I described this weird horrible inner agitation to our production assistant, Sabato. He did not judge me, that kind and wise young man. What a world of difference his acceptance of my vulnerable state made. I will aways feel deeply thankful to Sabato for getting me through that first shoot. I was still so terribly fragile. The shoot went well, and, at this point, I feel confident that some of that footage is ending up in the final film. You never know with film editing — what you end up keeping, what you decide to cut. It’s always changing. Alas, all that brilliant footage that ends up on the cutting room floor — such is the nature of filmmaking. 


So, 4 1/2 years have passed since that first location shoot in Boston; we completed production in 2018. Though we might choose to do some simple pick-up shots as we put together the fine cut, for all intents and purposes, we are now absorbed in editing and our post-production flow. Our rough-cut edit is going smoothly. The narrative and thematic pieces of the puzzle are falling into place. We recently met with animator Adam Teninbaum, whom BIC Director Stephen LaCorte introduced me to. Adam and artist Anna Puchalski will collaborate on our animations.

​Please excuse my disappearance from this blog. I had a few surprises over the past few months that stole my time. Some good, some bad. After trying to sell my house for four years, this year I had just about given up believing that a real buyer would ever come along. But a new realtor came in with a bang and sold the house within a few short weeks of listing it. It all happened quickly and once the deal was solid, I realized that I needed to find a new home and move out of the current one within six weeks. This was a house we had lived in for fourteen years, a large house that had to be emptied. I spent the lesser part of a day looking for a new house -- one that I’d seen on realtor.com fit the bill nicely. It had to. I do love my new house, but it’s a lot smaller than our former home and I had much to do to prepare for the move. We had tag sales; we sold to used furniture stores; we gave to Goodwill. We were ready to go. Onward to our new home in our warm, wonderful, and even a little hip, new burg in South Berkshire.
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Be visible - easier said than done. That’s what we’re trying to do a little bit at a time, wherever we can. Our joint T-shirt campaign with World Benzodiazepine Awareness Day and Benzodiazepine Information Coalition will help us all move a little closer to our shared goal -- awareness of benzodiazepine withdrawal syndrome as a serious and very real invisible illness.

Hi, Virginia here, your friendly As Prescribed team member and I’m getting the chance to tell you about our exciting T-shirt campaign. Our inVISIBLE T’s will help start an important conversation. But Virginia, how does wearing a T-shirt start a conversation? How is it any different from wearing a shirt for your favorite band or tv show? Well let me tell you, as someone who is currently wearing a shirt for their favorite tv show (Steven Universe), it has started many a conversation. When people say, “Hey Virginia, what’s on your shirt?” I get to tell them about this cartoon that introduces kids to really complex ideas about how the world works, how love, empathy and understanding are the true weapons for changing the world - then people watch it and come back and talk to me about it - conversation started. Kind of like a conversation you or I might want to have about benzodiazepines.

More important, benzodiazepine withdrawal syndrome is real; it’s not a fictional character. This very real illness affects very real people. We are fighting to make our story and our cause seen and heard. Wearing an inVISIBLE T will help do just that. It will give visibility to our inVISIBILITY.

Help us with this mission! We’re selling these shirts as a prequel to our summer fundraising campaign. All funds raised will go to the post-production for As Prescribed.  Order now so that you’ll have your T and your conversation-starter in time for World Benzodiazepine Awareness Day -- July 11.

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T-shirts available here!