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Benzodiazepine Healing -- Let There Be Light

1/3/2021

 
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'Through bleary eyes I write this message. In an effort to fully heal from past years of benzodiazepine injury, post-concussion syndrome, and Graves'/TED disease, I am using a somewhat quiet week to deepen an ongoing detox I embarked on in early September when I began a vegan diet -- heavy on raw foods, especially fruits -- and added a variety of herbal tinctures to my daily routine. This week I am on a 5-day juice fast of freshly-squeezed grapefruit and orange juice. 


While I was tapering off Klonopin, I would never have attempted a dietary protocol that included grapefruit juice . We are warned that grapefruit juice, specifically, throws off a taper. I followed a pseudo paleo diet while tapering, and had the advantage of access to plenty of organic food at my local co-op. I was white-knuckling it through all activities, including the food preparation and cooking I did in my kitchen. I was grateful that I usually had the kitchen to myself so that nary a soul could watch me read and reread and reread again any simple recipe that I was trying to follow. Even the simplest instruction tended to fly out of my head in an instant. 


At the time, I was also able to see a functional medicine MD who advised me to go gluten and dairy free, which made sense. So I did. This doctor also tested me for parasites. Ugh. It is horrible, and even weird, what benzodiazepine damage can do to our physiology. For all intents and purposes, benzos destroy the gut. And so much else — which brings me back to the Graves’ disease that I have been dealing with since 2018. I never had any discernible problem with my thyroid until I had damage from a benzodiazepine. Like so many of the benzo-injured, I developed hypothyroidism. Benzos can cause a chemical version of a direct and sustained hit to a person’s HPA Axis. And mine took a walloping. 


Hypothalamus, pituitary, adrenals. I experienced severe disruption to those all-important brain/body systems. I was left with extreme dysfunction that has involved a long, arduous recovery with all sorts of detours into other worlds of physiological illness and functional disability.. So, while it appeared I had healed my thyroid even in the first months after I completed my taper, my body’s ability to handle stress remained compromised. My thyroid took a new turn into a hyper state after a period of sustained duress — a difficult time that I would have had little problem rebounding from without my existing CNS vulnerabilities.

Here I am, seven years post taper and still dealing with the legacy of a ludicrously prescribed benzodiazepine. One of the most frustrating aspects of Graves’ and associated thyroid eye disease is the eye bulging and the ongoing discomfort, the worst of which involves searing pain in my left eye that wakes me up in the wee hours of the night. It’s as though a microcosmic ice skater with razor-thin blades is performing a sadistic ice dance on my cornea. I treat it with additional doses of eye gel, adjust the eye bandage I’m wearing to keep the eye shut, and eventually manage to go back to sleep. I do sleep now. I remind myself routinely that I have come far since my discontinuation period when benzo-related pain was extreme, incessant, and lasting close to two years — not a mere couple of early-morning hours.

Part of the reason I was so motivated to try a new method to get past Graves’ is because I desperately want full use of my eyes again. Over the past summer my eyesight began to deteriorate in earnest. Pre-Covid, I had gone to an ophthalmologist twice for a field of vision test to assess my eyes and predict what Graves’-related vision changes awaited me. Both times the doctor was too busy to perform the test. But he did prescribe some very expensive eye drops that were supposed to cure my eyes’ inability to tear properly. I was somewhat dubious but gave them a shot. I did not do well with the drops. They caused burning eye pain, so I stopped giving them the benefit of the doubt and looked elsewhere for healing. 

I am now working with an acupuncturist who used a raw diet and herbs to heal herself from Graves’. I enjoy following her recommended plant-based diet. I like the herbals she suggests. I have been feeling stronger and more energetic, and I have started to feel less pressure in both eyes. I now feel well enough to try her fasting protocol. I’m in my third day of a juice fast. I want my eyes! I want full use of my eyes again!

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So, two more days to go. Today is Sunday. Tomorrow  I’ll still be fasting when Cam, As Prescribed’s editor, and I return our remote editing suite (courtesy of Zoom and FaceTime). Cam and I are grateful that neither we nor any of our family has tested positive for Covid. But we both have kids. And, as most parents know, Covid has been the worktime-stealer of all worktime-stealers. My parental demands during Covid are low-level in comparison with Cam’s. He has two elementary school aged children, and he is the designated tutor with his mostly at-home kids. Has that put a crimp in our editing schedule? Unfortunately, yes. We grab work hours whenever we can. So, on Monday we’ll edit, and we’ll deal with the interruptions or schedule changes as they come along. We won’t give up. Our resolve is strong. We continue to receive promising news and build relationships with others who understand the work we are doing and believe in us and the importance of As Prescribed.


With the increase in benzodiazepine prescribing since Covid’s arrival (34% in the first months), as well as and some participant developments that needed to be included in the film’s final narrative, I decided to produce an epilog shoot last summer. We filmed in Boston and on the South Shore on a Thursday and a Sunday in mid-August. We wore masks and observed safe-distanced filming. Everyone except for one crew member had been isolating. But I’m not sure that had any bearing on the day’s exasperating shoot. It was the first time since filming began in 2014, that we did not make our day (get all the shots we planned for). So a personnel change was in order. Scott Shelley, our director of photography, who had been sheltering in CT since his series Tough As Nails want on hiatus, agreed to break isolation to drive up to Boston and finish up As Prescribed’s epilog shoot on Sunday. And it was brilliant, like a day spent with a treasured group of old friends, even though we were revisiting hellish benzo stories and current hard times with Geraldine and Joe Burns and Josh and Samantha Fitzmaurice.


We have the footage we need to finish.. Of course, it has not been easy getting there. Filming people whose lives have been upended, sometimes ruined, by a prescribed medication has been not been a trouble-free road to traverse. Yet the rewards are immense. And I still find that as impetus to keep going. There is a light at the end of the tunnel. And right now, after a terribly difficult year, I’m holding on to the hope that that the bleak times we are experiencing will lead to brighter days. I am more than ready to see that light at the end of this dark tunnel. So, do you hear me, eyes? Don’t let me down.


Happy 2021! And may all our dark tunnels lead to light this year!

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​Stay in touch at hellogobbo@gmail.com. 

​Fundraising to finish As Prescribed  is ongoing. Please support us if you can. ​

Believe Us!

10/26/2020

 
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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

Parallel Pandemics

4/15/2020

 
PictureSigns of spring at home base.
Like most thinking people, I have opinions about the COVID-19 pandemic. I do try to base them on qualified and quantified research — but I really don’t know nuttin’. I’m just trying to stay safe and get through these weeks, months, or years without catching the virus. Even if I could be assured that I would survive a mild case, I would not want to feel responsible for giving it to someone more vulnerable. 

In my home, we had a little bit of extra tension this past week. Last Thursday, after a tele appointment with my daughter’s doctor, we were sent to our hospital’s drive-through testing site for nostril swabbing. Because my daughter and I spent time in two Covid hot spots, Seattle and New York, in early March, and because my daughter developed a persistent cough shortly after, the examination team at our hospital decided that we warranted testing. 

The test was unpleasant, but nothing to be feared. It certainly did not feel like my brain was being stabbed with a sharp instrument. Not at all. And it’s quick. My daughter would not fully agree. She did not like it. But, as a survivor of a lengthy taper off a benzodiazepine, for me it was no biggie. I still have a keen memory of benzo withdrawal inner horror and its concurrent non-stop pain. The excruciating pain. Pain, some claim, is forgotten. Benzo pain, not so. Benzo pain is just one aspect of the benzo nightmare that creates deep shadows of trauma that are too easily accessed. 

Back to our tests: We were given the results yesterday and the news was good. Neither my daughter nor I tested positive for CV-19, so we have been given permission to end our self-quarantine. We have returned to safe social distancing, masked and gloved. Of course, like most, we are limited to our home base. My daughter’s school is keeping its students busy with Zoom classes and homework. And I can work easily enough. My workdays now consist of quiet admin tasks and the ongoing grant-application process, and working with our simplified-for-the-times remote editing system. I’ve also been joining Covid-related webinars organized for filmmakers. So many speak about having trouble with this new normal, working without ordinary human interaction. It makes many anxious and depressed. I think to myself, what’s so difficult about working in isolation? I am confident that benzo victims would agree. To a person, I think it can be said that anybody who has gone through benzo withdrawal is an expert at isolation —  while enduring horrifying levels of mental and physical pain. Ungodly mental torture and physical pain. So, I am not complaining. I am fully practiced at self-isolation. 





PictureWork space. My favorite mug and the usual clutter.
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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December Dream: All That Glitters

12/15/2019

 
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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PictureEvocative 9/11 T-shirt art created by my friend Heidi Sjursen. A gift that still elicits both horror and reverence.
The CBT I did for 9/11 trauma helped for about ten years. Despite the effects of benzodiazepine tolerance creeping in often enough, I held strong. Like many who are iatrogenically-injured and live without an awareness of the source of our mystery illness, I found ways to cope…

Until my daughter was 9-years-old. It was late May and I was enjoying life and a good turn of events. It was the end of a school year that I had found particularly stressful, but relief had come. After a difficult year, she would be leaving a private grammar school that had been a bad match for her and returning to our town’s warm and fuzzy public elementary school. Things were also going well with a film I was producing. We were nearing the end of post-production and knew that the film’s prospects for a good festival premiere and for international distribution were excellent. Feeling drowsy one evening while watching television with my daughter, I resolved to stop taking Klonopin. I just didn’t like the idea of taking a pill for reasons that no longer seemed to apply. And I thought the effects of the Klonopin I had taken the night before for sleep might be the reason I was drowsy so early in the evening.

A few days later I googled stopping Klonopin; though my escape from the benzo beast took much longer than expected (a 22-month-long taper), I was finally armed with the truth. I made my way back to a semblance of normal life. Much changed, of course. Because this experience, when you’re one of the unlucky millions who should never have been prescribed a benzodiazepine or a Z drug or an anti-depressant or any number of psychotropic medications, will change you at your core. It will bring you to your knees and while you are praying, begging for freedom, you will find yourself essentially changed. It can’t be avoided.

PictureA facsimile of the dreamt treasure

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

Jen's Story: Escaping Her Benzo Nightmare

10/10/2019

 
PictureBenzodiazepine survivor Jen Niles

​Hi, my name’s Jen Niles and Holly Hardman invited me to write a guest blog post for As Prescribed when I asked her how I might be able to help her with the film. I reached out to Holly in early September after a series of chance meetings led me to her film.

Much has happened in the month following our first contact, as another piece of benzo awareness that I recently got involved in is legislation around the prescribing of benzos. The public hearing for this informed-consent legislation was called at the Massachusetts State House on September 19. That led to my meeting both Holly and Geraldine in person and being filmed for the documentary on the day of the hearing. Life feels surreal with everything coming together, and I know that my suffering was meant for the greater good. Being here, alive and about 90% well, using what I have learned through my personal experience to be part of the solution to the disaster benzodiazepines have created is part of my life’s purpose. I was already pursuing a path in helping others, but now I’m also planning to work with people who need support while going through their withdrawal.

PictureHonoring her suffering: In the shadow of darkness I stand in the light.
My story is a long one, but the short version of it goes something like this: 

My life changed when I was 12 due to bullying at school and a traumatic event I had to attend an arraignment for. I began having panic attacks. Junior high was one of the most difficult times of my life and the panic attacks had been so bad that I didn’t eat for a long period of time. I survived, and got them to stop, and entered high school in a better place. I thought I was going to be okay, and I focused on school because I enjoyed learning and had many skills and talents I could put to use in the future to have a successful career. Life seemed to have many opportunities for me, except I was being bullied again toward the end of high school. That’s where dangerous medication first came into play for me and ended up affecting my ability to learn for a period of time. I left behind my full scholarship to college, dropping out after freshman year in 2001 with credits earned for only two classes. A lot of the effects I had then were very similar to what I’d experience fifteen years later when withdrawing from Klonopin, something I never could have done while working or in school. 

In early 2002 I was prescribed Klonopin to treat the added anxiety of Effexor when, against my better judgment, I was seeking help from medication despite knowing how badly things had gone for me before. I was desperate because I couldn’t seem to fix myself the way I had in junior high. It’s scary to know that treatment can worsen or even create anxiety. Klonopin was only supposed to be for two weeks, but how was I supposed to come off the very thing that was controlling the anxiety of another medication, plus my overall anxiety? I felt amazing during those two weeks! 

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I ended up asking to remain on it when I was sent to another psychiatrist for continued treatment. It didn’t matter that he actually warned me about dependency in long-term use because the damage was already done. I was on it, would have panicked if taken off, and at that moment I thought I was fine and my anxiety was cured and I could remain like that forever. I was never coming off. I thought I was experiencing life’s greatest miracle, and this is one of the dangers of benzodiazepines for someone with anxiety when they first take them. 

The adverse effects that followed shortly after were absolute hell and led to to a misdiagnosis of bipolar. The truth is I was greatly influenced by a new person in my personal life. I was vulnerable and that person encouraged my identification with that label without the benefit of proper medical evaluation. I was not able to see or understand anything clearly once Klonopin was in my system for a few weeks. I was lost, and my ability to make good decisions was very poor. I never experienced the true definition of mania, and didn’t go into psychosis, yet I carried a label of bipolar with me until this year when I finally had it reversed in my records once free of all pharmaceuticals. I spent seventeen years unnecessarily medicated, and the last several of those on disability from being unable to ever hold down full-time work. I lived a life on drugs that altered my cognitive function and abilities, regardless of never touching anything recreational or abusing alcohol. The only substances in my body were prescribed, and they robbed me of a real life. 
 
It was in 2012 I realized Klonopin was the source of my problems, but I had no idea how to get out of a hole that was so deep. By 2015 I was at a point where I had done an extensive amount of self-work, and was able to do things that used to be impossible for me. I realized I was finally ready to face the withdrawal of Klonopin, the low dose antipsychotic, and the mood stabilizer treating its side effects. I set the date of January 1st, 2016 to begin. I read endless information on the internet to prepare myself, created my taper plan, and set out on a three-plus year journey to take myself off everything and find the happiness I knew was inside of me if I could just rid myself of the layers of chemical misery covering up who I really was. I was lucky to have a psychiatrist who was thrilled to help me off of my medication because she didn’t think I needed them. She didn’t understand at first how slowly Klonopin had to be tapered, which just goes to show that there are professionals with a patient’s best interests at heart but without proper information or experience tapering someone off a benzodiazepine.
 
I am very grateful to be where I’m at now, even though I am still essentially penniless and don’t yet have a Bachelor’s degree. I consider my life to be better than a college education, as I got an inside look floating through various doctors’ and mental health professionals’ offices, finding all their information loopholes and gaps, and the knowledge deficits in need of repair, so that the system that treated me finally allowed something more effective for my personal wellness. And now I want the same for others. People should not have to spend a significant part of their lives being chemically-altered and damaged. Climbing out of that hole was my greatest feat in life so far. And now I want to let others know that escape from a doctor-prescribed chemical nightmare is possible. I am in training to be a peer support counselor, in part, so that I can help others understand and free themselves safely from benzodiazepines and other psychotropic medications that should, if they’re anything like me, never have been prescribed to them. 

PictureJen testifying in support of informed-consent legislation for benzos at the Massachusetts State House on September 19, 2019.
Stay in touch with us. hellogobbo@gmail.com

My Fifth-Year Anniversary

4/19/2019

 
PictureFrom the vaults. My tapering kit


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.

PictureA sample of Anna's work
Last year at this time we were cutting together a rough assembly edit. We could see that we had the first two acts of the film, and though we had hoped to complete the edit by the end of 2018, at least two of our storylines and one of our theme points needed further work. The benzo story is complicated, and we have been determined to serve the benzodiazepine story thoroughly and accurately. So we organized location shoots in Connecticut, Massachusetts, and California. We finally had the film in the can by late summer 2018. But in no way could we have had a solid rough cut by year’s end 2018, as it turned out. 

Now it’s just a question of not rushing ourselves. Needless to say, our work is significantly better when we don’t rush, when we go back and review over and over and turn it all upside-down and then, and only then it seems, it comes right side up.



PictureFeeling 90%. Dinner with my cousin Chris who is helping to raise funds for As Prescribed
One example: A couple of weeks ago we were stewing over a missing point that we wanted to make. Months ago we had dropped a sub-story about a doctor who had helped some people taper off of benzos. We weren’t convinced. There was something about the story that didn’t ring true. Then…lightbulb moment…”Remember that he said…” Reconsider the footage…take another good look at what we filmed…Voila! Movie magic. The sub-story now makes an important point about the medical culture. We were able to include it organically, and, I’m happy to report, the scenes are startling and key to a point that needs to be made.

Personally, I am hoping to have the rough cut completed by July. Cam says that might be rushing it. I’m also hoping that the film’s animations can be completed by August or September. As freelancers, our team still has to work on other projects, so that is always a factor when putting together a completion timeline. Anna works on Cake Boss, by the way. Tune in to the show to see some of her incredible work. Okay, so the rough cut should be done in July — at the latest August (don't quote me) — with music composition, sound editing, effects, color correction, transfers, and completion to follow. So that would take us to late autumn/early winter.  I cannot provide a hard and fast date for completion. But we’re on it. It’s on my mind all the time. 

Next week I head to Toronto. As Prescribed will participate in Hot Docs Distribution Rendezvous —I’ll be meeting with some of the world’s top documentary sales agents, distributors, and broadcasters. After completion we need to know where we will go, who will partner with us to help get As Prescribed out into the world so that the film can be all that it’s meant to be — a compelling film that will bring global and well-aimed awareness to the iatrogenic benzodiazepine epidemic. As Prescribed’s voice will be loud and will travel wide!  

Wish me luck in Toronto!



Fundraising to take us to completion is ongoing. We need your support. And please spread the word.




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Operating in Hyper Mode

12/20/2018

 
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​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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And so the movers came. I’m not going into the particulars because languishing in the gory details is taxing to my physiology. Seriously. I’ve moved a lot in my life. I’ve had great movers, in-between movers, and sorta lousy movers; but i’ve never had to work with an outfit that seemed to care zilch about doing a job right. Missing, broken, lost, damaged…lots and lots. That sums it up.

Yes, the move was horrible. Utterly stressful. This was not normal stress. I did my best to breathe through it and deal with the consequences without losing it. Despite the absurdity of the situation, I remained chipper and hopeful. But my physiology was going down a different track. And I starting crashing. I haven’t felt so devoid of energy since I my CFS/ME years in the nineties. Could this be happening again?

I had arranged to attend IDA’s Getting Real documentary conference in Los Angeles in late September. I could barely move around the conference, which was disappointing on many levels, one being that it was held directly up the hill from my favorite apartment from the years I lived in LA. I had hoped to revisit my former life there and indulge in some sweet nostalgia. But I had too little energy. It was strange. I most looked forward to my flight home when I would be able to relax. Just plop down in my seat and chill. Kind  of pathetic. 
. 

I had two fortunate encounters before leaving. Benzo awareness friend Jill Solomon and I met in Larchmont Village and gabbed about advocacy and fundraising over tea. And I was able to join the disability filmmakers’ meeting before heading out. The group recognizes invisible illness as disability. Of course benzo injury creates disability. We know that, and we hope to make the outside world understand that too. The disability filmmakers’ meeting was a welcome and promising event with new like-minded friends made. 

Once back east and trying to settle into my new house, the crash was complete. Utterly and totally. I could not go up or down stairs without dragging myself up by the rail or leaning against the wall to go down. Is this just sudden aging? I wondered. 

In early October, I went to a functional doctor who did muscle testing. He found Lyme and Babesia, so I went on a bunch of herbs and new supplements. I continued to worsen. I found a new PCP in my new town. He ran a full battery of tests, then called me to give me the news. He told me that I have the worst case of hyperthyroidism he’s ever seen. Imagine that. I’ve had hypothyroidism and it wasn’t particularly horrible. I put on a lot of weight, and I had been doing the ketogenic diet to lose that weight and was resting comfortably at a 10-pound loss. I missed fruit and sushi too much so had said good-bye to keto last summer.

Even while eating fruit and pasta and gelato, I was shrinking. I had gone from 130 to 108 since the move. The unplanned weight loss was startling, but my total energy deficit is what really scared me. The blood tests were not good. I had gone for a month trying the holistic way. I was getting worse. I could barely walk, I was having trouble breathing, all I wanted to do was lie down and rest. 

​

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But I continued to head to Brooklyn to edit with Cam. We cut together two new promo trailers for the film, a slide deck for potential donors, and added new scenes to our rough cut. So, yes, we still got some nice work done on the film, but that wasn’t good enough. I did not have the energy to take care of emails and paperwork, never mind keep up with fall grant applications. Too many things had to go by the wayside and I had visions of the whole film project coming undone. We need money to keep going and my efforts to find money were failing. Wishing and praying were not working.

​My holistic doctor called me, and told me that he and my new PCP had been comparing notes. I should consider taking medication. In concert, my new PCP called me to his office, sat me down, and told me it was time to get serious. Take a medication. “I know you don’t want to and the side effects scare me too, but what is the alternative? You’re getting worse.” He doesn’t think it’s Lyme, but he does think the cause could be an unknown virus. I believe this doctor has my best interest at heart. I decided to listen to both doctors and take a pharmaceutical medication. For me and for most who’ve survived the adverse effects of a prescribed pharmaceutical, taking a new one is daunting. But I did. Methimazole for my thyroid. And I am, indeed, starting to feel better. 


It was difficult for me to agree to take the medication. Adverse effects are known and common. But methimazole is not a psychotropic (never!) and sometimes it seems wise to remember that often enough, when we’re terribly ill, carefully prescribed medications can help, the good can outweigh the bad. 

Another interesting point: I saw an ophthalmologist this week to make certain that my thyroid problem wasn’t affecting my eyes (as is often the case). While reviewing my test results, he pointed to my pituitary as the source. I told him of my horrific benzodiazepine experience and harm to my HPA axis. I wondered aloud if the hyperthyroidism isn’t some lingering long-term effect. He also wondered, looking at my records, if that didn’t make sense given my history of hypothyroidism while tapering and then, some time later, after a concussion which resulted in a chronic case of post-concussion syndrome that brought back HPA symptoms and abnormalities with a vengeance. But I was feeling better this year. Finally. So, really? Again? Some of us remain vulnerable. I guess I’ve turned out to be one of them.

That said, I celebrate my positive, grateful “happy to be alive” feeling every day. I reached that magic bar — I can savor life again — even while technically ill. I left the benzo taper torture chamber long ago. Nothing can match it for hell on earth. And to all those who are dealing with difficult tapering or post syndrome, hang in there. Healing happens. Even if, yes, there are unwelcome detours here and there along the way.



Note: 
We are at the year’s end, and most who qualify for tax-deductible status for charitable contributions have already taken care of their charitable gifts. If you are in that position and can manage to donate to As Prescribed through Women Make Movies, please do. Please contact me at hollyhardman88@gmail.com for details.


​Happy Holidays to All!

Holly








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December 20th, 2018

12/20/2018

 

Summer Fundraiser

7/10/2018

 
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Hi! Virginia here. Happy to be back on the blog talking about As Prescribed’s summer fundraiser!

I spend most of my day-dreaming time these days thinking about the beach. The warmth of the sun on my skin, the feel of sand being pulled by the current from under my feet as salt water swishes around me. However my thoughts these days are also about how hard it can be to do something as summery and straightforward as going to the beach. How the whole venture could lead to sensory overload, how something as wonderful and quintessentially summery as a trip to the beach can be next to impossible for someone living through benzodiazepine withdrawal. If you're here, you probably know this by now, but for those who don't - that's why we're here, making this film, working to share this story.

You thought we were finished perhaps, or had abandoned the film without completing it?

No way! Giving up is not in our vocabulary. We've been making steady progress, and we will finish the film and get it out into the world...And you'll know about it!

In this effort we need help. We’re close to completion, and now we need to secure additional funding for post. We've raised enough funds to wrap production, and have even begun editing; those funds have set us on the road to the finish. Now we need a concerted push to keep moving and to see us through post-production. So we're running a summer fundraising campaign. The funds raised here will immediately go toward the completion of the film. Our goal is $25,000 -- the funds will be used for editing, color correction, audio mixing, etc... Oh, how grateful we will be to have your help!

Join our friends and supporters who have followed our progress and know that we are on our way!

Help us finish As Prescribed.

Be generous. Please contribute and let others know the importance of seeing As Prescribed make it to the finish.

Things to remember:
*$25,000 goal
*To reach our goal, we need to go viral. Please share our campaign with family, friends...with everyone!

As Prescribed Donation Page 

inVISIBLE

6/6/2018

 
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!

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