blogs

The Movement of Fear

11/13/2022

Rock climbing and the healing journey from benzodiazepine damage*
By Matt Samet

The author. Photo taken during a 2018 As Prescribed location shoot in Boulder

I fell 30 feet, dropping into the void on the edge of a vast, gloomy upside-down bowl known as the Madness Cave in the verdant mountains east of Lexington, Kentucky. I knew that my belayer and the system—rope, harness, carabiners, protection bolts drilled into the rock—would arrest my fall, as they have countless times before. Still, there was that momentary twinge of fear as I set up to lunge for a tiny handhold I knew I’d likely miss. Seventy feet up the wall, my forearms were “pumped”—flush with lactic acid—from the strenuous, overhanging climbing, and my fingers had begun to open. The move was a Hail Mary, a last-ditch effort to reach a better hold and perhaps recover, to dangle my arms and shake the lactic acid out to bring fresh, oxygenated blood back in.

But it failed. And so I fell, coming to a stop three stories lower a split second later, looking back up at the wall to puzzle out what had gone wrong—and how to do it better next time. The moment of fear was already behind me, well in the rearview mirror.

If you’d told me 17 years ago when I was in the throes of an agonizing, psyche-crushing taper from benzodiazepine tranquilizers that I’d someday be healthy enough to again push myself out rock climbing—both physically and mentally—I’d have called you a liar. After years of benzo use, as prescribed for anxiety and panic attacks, with a complex history that also included periods of abuse (of benzos and other substances), I’d found myself in dire straits. I was in my early thirties, living with a girlfriend in Boulder, Colorado, a mountain town surrounded by cliffs that I’d made my home precisely because of those rocks.

That autumn, 2005, however presented a much grimmer reality. As I fought my way through what I now realize was a too-rapid taper off 4 mg a day of clonazepam (the generic form of Klonopin), a flurry of nightmarish, ever-fluctuating symptoms came to dominate my days and nights, foremost among them a chemical anxiety so thick I can only describe it as pure existential terror. Soon, I was housebound. Compounding this were the various “medications” psychiatrists kept foisting on me to combat the “worst anxiety” they’d ever seen—while not once acknowledging the reality of benzo withdrawal—as well as three misbegotten hospitalizations in psychiatric wards. Had I not, toward the end of that ghastly period, done my own research and realized the true root of my symptoms—and that I simply needed to give myself the time and the space to heal from benzo damage, free of all psychotropic interference—I’d likely be dead or still overmedicated into fat, miserable inanition, a fate not unlike that of a calf in a veal cage.

During those unending months in 2005 and into 2006 (I took my last dose of a psychiatric medicine in October 2006, after tapering off the final three drugs I’d been prescribed to “help” me get off benzos), I became so mentally slowed yet also hyper-sensitized to external stimuli that I had to temporarily leave behind things that had once given me pleasure: literature, with its complex language and myriad upsetting themes; horror movies, with their jump scares and depictions of violence; video games; and so on. I also had to retreat from so many things I’d taken for granted as fixed and necessary parts of my existence: going with friends to restaurants, whose public spaces felt overwhelming and left me feeling raw, exposed, and vulnerable; going to the supermarket, where the vast, booming warehouse space and fluorescent lights triggered derealization; driving, especially on the highway, where claustrophobia enveloped me; and so on. My life closed down to eating, drinking, pissing, shitting, working (freelance editing at home, when I could focus), and sleeping when possible; there was no bandwidth for anything else. It was, as Paula, Geraldine Burns’ friend in Holly Hardman’s excellent documentary on benzos, As Prescribed, noted: “Things that my whole life I’ve loved to do have become a source of not fear, but terror.”

I remember one day taking a bath to try to calm down, and picking up the photo annual of a climbing magazine as a distraction. Even though I’d been climbing for 18 years and had been in similar situations, and knew all the risks, the images of climbers high on sheer limestone faces in the Alps, doing gymnastic jump moves in the gym, and climbing tall boulders without ropes triggered panic. It was too much stimulation, provoking a fear response as if I were up on those very walls myself but, in this chemically stripped-down state, rendered unable to process the hazards and make the appropriate decisions to stay alive. I set the magazine down and stared at the subway tile in front of me, the grout shifting and squirming courtesy of my insomnia-bleared vision.

If I couldn’t even look at a climbing magazine without having a panic attack, how was I ever going to become a climber again?

It was both a pleasure and painful to work with Holly Hardman on As Prescribed. A pleasure in the sense that the actual filming was interesting and fun, but painful in the sense that it dredged up old memories I’d just as soon forget. We were also filming at a vulnerable period, starting during a time (2014/2015) when I was quite ill from a setback, when climbing once again took a backseat to survival.

Yet now, in 2022, I have with hard work been able to resume rock climbing at the intensity with which I pursued it during my pre-benzo years. Much of that work was physical, involving yoga, long walks, and a slow, gradual return to the sport so my muscles and tendons could re-adapt. But the bulk of the labor has been mental and neurological—reconditioning my central nervous system (CNS) to get used to the exposure (heights), extreme exertion, and falling.

I’m mostly better now, but I still have bad days, and bad periods during each day when a strong electrical current runs through my belly and spine—central nervous system (CNS) hyperactivity—and my muscles tense and burn. I also have short, time-limited spells of bizarre, random anxiety that feels purely chemical, and is not related to life circumstances. If these spells hit when I’m out climbing, I have no choice but to press through, symptoms be damned.

Matt experiencing the joy of climbing again. Photo: Dean Ronzoni @deancool

.Because humans are inherently scared of heights—a useful fear that keeps us from wandering off cliff edges—a key part of climbing well is acknowledging then suppressing our inborn fear of falling. Doing so lets you relax and focus on the physical challenge, moving fluidly and efficiently through what is essentially a dance or gymnastics routine in the vertical plane. There are myriad books, articles, and coaches to help climbers do this—mastering the fear of falling is a universally acknowledged challenge, one that, as with any training, takes ongoing vigilance and effort.

The most famous climber in the world right now is Alex Honnold, known for his singular, nearly incomprehensible ropeless ascent in 2017 of El Capitan, the 3,000-foot monolith in Yosemite, among countless other free solos. I’ve known Alex since 2007, back as I first resumed climbing after my years in acute withdrawal, and he’s a pretty normal dude; back in 2007, he was a goofy, funny kid with strong fingers who always wore sweatpants—famous in the climbing world for a couple of free solos in Yosemite but far from a household name. Still, even then it was clear that Alex was driven; he lived and breathed rock climbing, driving all over the western United States in a white mom-van to hone his craft.

In 2016, Honnold—by then famous—agreed to an fMRI brain scan, to register his reactivity to a series of disturbing images meant to trigger a fear response in participants. His control in this experiment was another male climber of the same age, but without the daunting free-solo résumé, though still labeled a “high-sensation seeker” as climbers tend to be. Perhaps not surprisingly, Honnold’s amygdala—the part of the brain that regulates our fear response—showed no activation in the face of the images, while the control’s did. Honnold had, through practice perhaps coupled with a congenitally unreactive amygdala, conditioned any reactivity right out of himself. It’s what lets him maintain his composure ropeless on difficult, insecure moves thousands of feet off the ground.

I’m no Alex Honnold nor will I ever be, but I have been able in my own healing to apply the same principles he used to train his mind and CNS—namely exposure and repetition. In recent years, the fear of falling had begun to consume me, coupled with a reactive CNS that I sometimes worry may remain sensitized for the rest of my life—or at least not bounce back to its full, original resilience. In fact, climbing had become a misery, as I was so scared of falling that I stuck only to routes below my physical threshold or rehearsed climbs so much I was sure I wouldn’t fall, even in cases where falling was perfectly safe.

So much of the pleasure had been drained from the sport, and I was no longer pushing myself physically the way I wanted to. So I set to work, realizing that I could not hide forever behind the excuse of a benzo-damaged CNS because, fuck it, this was my life and only I could change it. Or at least try.

This year, then, I began whipper therapy—a “whipper” is climber slang for a fall—in the gym and at the rock. At first it was overwhelming in a way that’s hard to describe, even with a trusted friend holding the rope and the intellectual knowledge that our systems were failsafe. Benzo people know the feeling: You suddenly feel too small in a world that’s too big, too permeable to sensory input, too fragile and brittle and vulnerable. On the wall, preparing to let go and take a fall, it was as if I could feel each molecule of air at my back and sense the inexorable pull of gravity wanting to dash me against the earth. Every fiber of my being screamed not to let go and that I would fall to my death. But I pushed through. Soon five-foot falls became 10 feet, then 20, until I almost relished the stomach-in-your-throat feeling like a thrill-seeker at an amusement park, until heads were turning in the gym at my whipper antics.

The whipper therapy worked. I was worried that it wouldn’t, given that I’m working with a CNS that does not always function like it once did. But I’ve slowly been able to condition away the fear of falling, until finally I’m back to where I want to be—able to focus on the rock and the movement, instead of being paralyzed by fear. To me this is a cause for great optimism for all of us benzo folks, showing that if we put the work in, are patient, and manage expectations, we too can get most or all of our old lives back, turning things we took for granted but that now terrify us back into things we can take for granted again. As proof, here’s a video of me taking a 20-foot whipper on a difficult climb near my home in Boulder, Colorado, all while Alex Honnold himself—passing through town with his family back in August—watches me go a muerte (“to the death”).

As with everything in life, my aversion to falling is a work-in-progress, but it’s work that I’m happy to put in. Perhaps I’m a bit more reactive to falling now than I was before benzos, but I don’t dwell on that. There are no guarantees in life—for any of us—and things are always changing, be they our health, our relationships, our careers, and so on. I feel fortunate for the health I have now, the progress I have made, and the opportunity to push myself so hard on the rock that I can fall off again; I feel grateful to be able to move through my fear to see what’s on the other side.

Matt Samet is a freelance writer and editor based in Boulder, Colorado.

• This article appears on this site with the permission of the author.

Many Thanks to Claire in the UK for Her Guest Blog

6/24/2022

In “As Prescribed” Holly Hardman has taken on an almost impossible task - to communicate the incommunicable; namely the lived experience of the symptoms which accompany being on and discontinuing from prescribed benzodiazepine medication and the devastating fallout they can cause.

She does this against a backdrop of many documentaries that came before hers, including ITV’s “Ada versus Ativan” which came out in 1988 and the BBC Panorama “The Tranquiliser Trap” in 2001.  Most of these older films failed to grasp the truth of the story, leaving the viewer with the sense that these people must have a psychological problem or character weakness to have such difficulty withdrawing from a benzodiazepine. By telling the story from the perspective of lived-experience, showing the years and years of endless suffering, and the impact on real people’s lives using their own words, Holly is rightly putting the narrative in the hands of the sufferers rather than the power structures that have failed to properly address the benzodiazepine problem for decades. And it’s a problem which former British Prime Minister David Cameron, while still in office, rightly described as a “national scandal.”  Holly’s film goes further. This is an international iatrogenic disaster.

It is long overdue that the story of the victims of benzodiazepines is put in the hands of those that are suffering or who have suffered, and not in the hands of detached and ill-informed health practitioners or journalists using their limited perception to report on the problem and not realizing what the problem actually is. The real essence of the media story, which the media have missed time after time, is that this is not a problem about people who have a psychological need to continue taking a tablet which they can’t stop because of a psychological issue, or who are misusing or abusing their medication.  It is a problem of physiological dependence and of the physical and neurological symptoms which are so completely overwhelming, so numerous, so debilitating, so isolating, and so inexplicable to others -- symptoms that can cause death, dementia, family breakdown, and homelessness with whole lives devastated by one pharma-created substance.

When trying to convey the benzodiazepine illness experience of GABA-receptor downregulation to other people, it is often hard to convey the variability of symptoms between people -- i.e. that some people can be affected to the point of being bedbound for very many years, while for other people it is much less severe. It is also hard to convey the sheer number of symptoms that happen all at the same time and for so very many years. Indeed, the duration seems unbelievable, even to those who have experienced it, as does the enormous range of neurological symptoms that occur.  Holly tackles this variation head on and charts the stories of people very differently affected, with varied ages and backgrounds and brings all the strands together in a compelling piece of work.

From a personal perspective, I remember seeing the trailer for “As Prescribed” when I was just starting my taper. I had an idea of what lay in store for me. I knew it would be terrifying and I knew it would be harrowing. I knew it would be unsupported, misunderstood by medical professionals, and I knew that the media were still not reporting it in a way that was helpful to anyone. But Holly’s film promised something different. Knowing that the film was being made gave me tremendous strength at the beginning of my taper. Although I would not be understood or supported by the medical community or by any journalistic coverage, one day there would be a hope of being understood, of somebody putting a film project together that would actually tell our stories. Because I was campaigning alongside many of the people in the film as it was being made, it really is extraordinary to look back on what life was like back then. To this day I still find the experience incommunicable. I rarely try to communicate it or its ramifications. Remembering can be difficult. I had been unknowingly suffering from tolerance withdrawal since 2002, only one week into taking my first doses of a benzodiazepine.  Twenty years of my life were wrecked by these tablets, so for me this film is very important, and I’m sure it will be equally important to many thousands of others affected by these life-destroying drugs.

While I was campaigning, whenever there was any news or any kind of newspaper, radio, TV, or short film coverage, I would always feel a sense of trepidation; although the coverage was needed and very welcome (in fact desperately needed and desperately welcome), there was always the worry that the story would be one more in the inaccurate, addiction-obsessed lexicon. Time and time again journalists would approach us with the same preconceived ideas about what the illness was, and it was absolutely exhausting to  have to refer these people time after time to the relevant documents at the Benzodiazepine Information Coalition and World Benzodiazepine Awareness Day sites, not to mention all the other survivor blogs out there, and to point out why labelling this problem as an addiction was incorrect, inaccurate, offensive, and potentially deadly if relied upon for actual medical treatment.

Even when I consulted the British legal system about the difference between physical dependence and addiction, counsel came back with the opinion that there was no such distinction in common usage and therefore the distinction could not be upheld in law.  With so little recourse in law to hold the pharmaceutical industry accountable for what they have done, the media narrative seemed absolutely vital, representing our only hope for change. So it was beyond disheartening when, despite individual journalists doing a superb job of investigation the story, those same  journalists who had spoken to the survivors who were willing to share their stories, were then undermined by editors who had not spoken to the victims themselves and who insisted on putting exploitative, sensational, and inaccurate headlines that further stigmatised the victims and introduced the story in a manner that alienated the very people we were hoping to reach.  As a result, far fewer potential victims we wanted to warn ever heard the message. The editors and sub-editors continued to pump out inaccurate language and preconceptions in their headlines. It is traumatic for us as individuals and as a community to have our story told badly or mis-told. Worse, it can lead to inappropriate treatment and people dying.

Holly Hardman has achieved an affecting piece of work that shows a wrong that needs righting, a situation that needs a resolution, and it shows it very movingly without being sensationalist in the slightest. This is a very difficult balance to achieve, but Holly Hardman has managed to do this in “As Prescribed.” Holly put together this incredible piece of work even when ill herself.  I hope that, as a result, this subject of benzodiazepine harm finally gets the attention it deserves in the way it deserves, and that change can come as a result.

It has been clear for some time that there has been a desperate need for the story of the benzodiazepine scandal to be accurately told.  It is a medical nightmare that has harmed so many millions of people worldwide, with many having gone to their deaths not knowing the reason for their ill health, increased anxiety, early-onset dementia, familial breakdown, personal collapse, or even death. And it is clear, after so many attempts at telling that story, that the only people who can really tell it accurately are those who have lived it themselves.

In the same way that so many of us have had to be our own doctors to save our own lives through this ordeal with no medical backup or understanding, now it falls again on the community to be its own journalist and tell its own story.  The person who has made that happen is Holly Hardman. This is why “As Prescribed” is so ground-breaking. This film sheds a completely new light on the way these illness-inducing drugs are prescribed.  The film makes clear that there is a crucial need for change in the culture of prescribing, and soon.

Written by Claire Violet Hanley

Frankenstein and Pharma

10/16/2021

My Brother Bob

It’s time for an update on the progress of As Prescribed. We have the fine cut. After a series of virtual editing sessions on Zoom, we pared back our 100-minute rough cut to a 92-minute fine cut. Now I’m devoting my days to related post-production tasks: consults with our music composer, securing a studio for a high-quality affordable sound mix, finding an effects person for the film’s very last shot, arranging our color correct sessions, preparing titles and captions, and sorting out our deliverables requirements. And, of course, I continue to search for finishing funds. We are fortunate that Poull Brien (Charles Bradley: Soul of America) has joined our team. He has become a great cheerleader for As Prescribed and is working hard to help with fundraising. The schedule still looks good for completing As Prescribed in February and having it ready for a spring 2022 premiere.

Despite the frenzied pace, I took a day off this week and traveled to Boston to celebrate my brother’s birthday. Over the past year I’ve watched his MS advance and take hold of his body and mind in a targeted effort to steal him away from himself and his life. His once brilliant and extraordinary mind is enduring what could be the final assault. He cannot speak other than to say rudimentary words, mostly labored yeses and noes. He cannot stand on his own and he certainly cannot walk. When MS takes over it is ruthless. Yet somehow my big brother manages to communicate his satisfaction with life — with his wonderful partner, his family who loves him, his compassionate caretaker, and his comfortable home.

Nature has played a cruel trick on him — anointing him with MS when he was in his late 20’s. His burgeoning career as a stellar journalist was quickly compromised. Seeing a future of uncertainty with the ins and outs of MS resurgence and stealth disintegration, he altered his career path, working the next decades as a desk editor at the Boston Globe, writing on rare occasions, and, in the 90s, helping to found Out Magazine. But MS was always there, lurking. Stealing bits and pieces of him in fits and spurts as the years passed. He retired early and has been eking out moments of comfort, even joy, with his partner Miguel, living in a modest home just west of Boston. But the day has come, the day when the disease is making clear that it will not relent, it will not release him. It will not turn back.

A Banner Day. Returned to the community gardens where we filmed Sonja Styblo in August 2020

Autoimmune issues of one sort or another seem to run in my family. I’ve had my share of autoimmune illness, starting with CFS/ME back in the 90s. CFS/ME certainly rerouted my life journey, though I considered myself lucky back then because I had beaten the illness within ten years. But the joke was on me. An unwelcome interloper named Klonopin, prescribed as part of CFS/ME treatment, stole my hard-won good health, hurling me into a deeper, more disturbing state of ungodly illness, one not meant to be experienced in the earth’s grand design, I am certain. Benzodiazepines are a Frankenstein-style monster let loose by the pharma industry. The original benzodiazepine developers, Leo Sterbach and his team at Roche Labs, like the fictional Dr. Frankenstein, did not intend to let loose a diabolical monster on the public. But their bosses, the corporate heads, dismissed all evidence that the first benzodiazepines, Librium and Valium, posed serious risks to their consumers (aka the unsuspecting public). From the get-go these profit-hungry decision-makers and highly-paid marketers ignored, overlooked, and suppressed evidence of serious risk. And now, more than 60 years later, doctors who insist that we must use evidence-based protocol in medicine continue to ignore the mounting evidence of harm. They continue to misprescribe benzodiazepines to millions of vulnerable people around the world.

What most people do not realize is that many benzo victims are as ill and as disabled as my brother who has MS. Though, with benzos, I believe we are dealing with something more sinister. The benzodiazepine epidemic could have been avoided. The cause of MS remains beyond researchers’ current understanding. Benzo injury does not. Yet, safe prescribing is still uncommon. When patients experience adverse effects, prescribers still tend to increase the dosage. And when symptoms worsen, doctors rarely recognize them as tolerance or kindling. Still. Too often additional medications are prescribed, compounding the injury, placing the patient in deeper jeopardy. Once the source of benzo illness and injury is detected (usually by the patient), tapering and healing can begin. But for too many healing takes years. The definition of recovery becomes relative. Expecting full recovery can seem foolhardy.

Who knows this better than a benzo victim? Over the decades, benzodiazepine risks have gradually been made available to members of the public who care to hear. A small number of clinicians and journalists started listening to patients’ horror stories and took a better look at the evidence. Victims of benzodiazepine misprespcribing began finding each other, educating each other, and advocating for awareness and change. I am grateful beyond measure that one of the originals, Geraldine Burns, appears as the heart of As Prescribed.

As I sign off, I want to acknowledge my brother’s generosity. He has been a reliable supporter of As Prescribed. He might not be able to speak or write the way he used to, but he can still express his empathy for those harmed. With a nod, he lets me know that making this film is the right thing to do.

Please consider joining the cause. Help us finish As Prescribed.

Mother's Day 2021

5/23/2021

Mother's Day takeout dinner. And a finished rough cut

Last year’s Mother’s Day was grim. There were too many reports of mothers and grandmothers lost to Covid. At home, my daughter was struggling with the adjustment to remote learning and separation from her peers. Work on As Prescribed had transitioned to a painfully slow year of remote editing with routine interruptions and delays. Overseeing kids and adjusting to the slog of safety protocols was morphing into safety paranoia and taking a toll. Also, learning that the prescribing rates for anti-anxiety medications (primarily benzos) had increased dramatically pressed on my psyche. I tried to communicate to non-benzo people the seriousness of the rising benzodiazepine epidemic that was piggy-backing on Covid and the similarities between long Covid and benzodiazepine injury syndrome. Through all this, I did feel a measure of comfort knowing that none of my close family members or I had contracted the virus.

Mother’s Day 2021 was better. Much better. As Prescribed’s editor Cameron and I finished the rough cut of As Prescribed on Mother’s Day. Yes, we did. Cameron was getting married that week and we had a firm goal of finishing before his nuptials, so we agreed to work on Sunday, Mother’s Day. I’ve started to share the rough cut privately with people who who are familiar with rough-cut viewing and gave us helpful commentary on earlier works-in-progress. I also took a chance and showed it to a small group who are not rough-cut savvy. So far, the word on the film from our test screeners is uniformly good (“riveting” and “absorbing”). I see places in the cut that I want to tweak and a new short scene I want to add. I have been making notes, and am looking forward to returning to our now-familiar remote editing set-up the first week of June.

I’m also armed with double doses of the Moderna vaccine, and feeling as though I am connected to the outside world again. Thrillingly, I was able to attend my daughter’s graduation ceremony in person. My one and only daughter graduated from high school this past week. Proof of vaccination was required to attend, and I was only too happy to comply. Mask-wearing was mandatory, but who cares? I’ve grown so used to them. What a happy group of moms, dads, and kin we were. The graduating seniors were a joyful, boisterous throng, united in their shared jubilation, excited relief, and personal pride in work well done. A life of relative normalcy had returned after their long year of Covid restriction and containment. Spirits soared.

She did it! My daughter graduated from high school. Some parents of grads are basking in their child’s honors and awards. Some are heartened by the thought that their child is going to an Ivy League college. Some are proud that their kid set a school record on the athletic field. Some are thrilled that their kid earned a math, language, or science prize. But me, as a survivor of benzodiazepine injury and the producer of a film about prescribed-medication risks, I am just so damn grateful that she made it though high school without getting caught in the ever-looming threat of a medical or psychological evaluation that includes a benzodiazepine, antidepressant, or related psychotropic drug prescription. Because, like most teens, my daughter suffered from her share of down times, anxiety, and panic states during her high school years. Despite sustaining a serious concussion the third week into her freshman year, followed by months of slow neuro healing, a classmate’s suicide, a junior year as the target of mean-girl bullying, a disruptive last-minute switch to a new school, a year of Covid restrictions and isolation from peers…I could go on. To put it mildly, she was not okay. I was terrified for her.

A day of unadulterated joy

Any time a doctor or nurse suggested that I might consider a medication for her anxiety, I introduced them to As Prescribed and made my stance clear: Do not steer her into the psych world and do not encourage her to take a psychotropic medication. Never did they push too hard, but the invitation seemed to rest within my daughter’s reach should she decide to join the psych system. Even though years earlier she had remained mercilessly ignorant of my benzo-induced impairment during my clonazepam taper, she was, in fact, being brought up by a mom who used to drive the freeways of LA with ease but now went into panic mode when she had to take a left-hand turn in oncoming traffic. That she noticed. That was weird.

When she or anybody in her adult circle brought up the subject of benzodiazepines, antidepressants, or the increasingly popular choice, gabapentin, I repeatedly informed her of medication risks and discussed the innumerable negative outcomes I had discovered while doing research for As Prescribed. By her sophomore year, she started embracing the cause. No benzos. No antidepressants. No pills. Though pill-taking surrounded her. It’s astounding how many young people are prescribed benzos "as needed," put on antidepressants, or given gabapentin -- the drug newer to the list of worrisome psychotropics. What are we doing to a generation of young people? Where will they be five and ten years from now? How debilitated will they be? Am I over-reacting? I hope so. But I think not.

My daughter toughed it out, you might say. She made it. She learned some healthy coping mechanisms. She finally made the connection to diet and became a plant-based eater, dropping gluten (her beloved pasta), refined sugar, and dairy. She learned breathing techniques. And I found a therapist who uses non-pharmaceutical methods to help teens heal from trauma. Thankfully, our insurance policy covered the cost. A win. Oh, and, by the way, she did earn High Honors for her final semesters. And she’s still sitting with a winning record for her coxing skills at the Head of the Charles Regatta pre-Covid. Of course, these triumphs are utterly fantastic. But I’m most proud and relieved that she resisted the potentially heartbreaking psych-pill trap that befalls so many teens.

Walking Pippi on Cape Cod

,I think that most high-schoolers deal with anxiety, fear of the unknown, confusion about identity and purpose, and feelings of isolation. Teen angst. Why don’t we address this openly? Why aren’t we regularly assuring kids that all their fears are standard practice responses to growing up — and the growing brain? Angst is a common feeling and way of thinking. With guidance, angst opens doors to productive growth. Can we make it a practice to shepherd high-schoolers through the desperate teen years without having them become big pharma’s next profit-yield casualties?

When parents are not adequately informed, when doctors do not do thorough research, when the populace-at-large believes the institutional narrative, our kids get hurt. Please don’t think I’m knocking the ones who find help in the system. That’s great if they do. But too often that’s not what happens. When pills are the primary method of treatment, it’s not going to go well for many. Where are the studies that support the teen-prescribing protocol? Because the ones I find clearly communicate risk. We deserve the right to weigh the risks. Not many parents or teens are given the option — i.e., true informed consent. I think of the young people in As Prescribed who were given benzos in their teen years and are still suffering in their twenties and thirties. I hope As Prescribed will help wake people up to a counter-narrative, one that challenges accepted notions promoting pyschotropic medications as first-line treatment for vulnerable young brains.

As my grad (also vaccinated) galavants off to a series of post-commencement gatherings and friend visits, I have snuck off to Cape Cod for a few days to rest and recharge after the intensity of this past month’s schedule. We have the rough cut. Finally. And, as we enter a safer time, with vaccines helping tide the flow of the virus's global journey and as mask-wearing perhaps remains a norm, I dare to believe we will be able have some form of live-audience screenings when the film is released. Cam and I will be tweaking our work further over the next month or so. Then our music composer will work on the score and the sound editor will perfect our audio; then we’ll head to New York to take it to the finish at Final Frame — as long as our budgetary needs have been met. That’s always the difficult part. Raising the funds.

I still spend a lot of my time trying to raise money to make and now complete the film. Thankfully, we have a small surplus that should take us through the fine cut. But then…I continue to wrack my brain trying to think of who might give. Who cares about our cause, our purpose? Making a film about a people whose finances are depleted, about people who have lost their homes, their jobs, and their financial security, a film that involves an under-acknowledged invisible illness poses distinct challenges. Why have I continued to work on this documentary when its funding has been one long-term crap shoot? Because I believe that As Prescribed is needed. I believe the benzodiazepine story needs to be told from the point of view of a victim/survivor. We have an engaging, compelling film. Almost. We have the rough cut. And we’re happy with it. As Prescribed is a necessary contribution to the invisible illness narrative. I hope that you, the audience here and audiences to come, will agree. As Prescribed will take the conversation to another level and to places where its message of change needs to be heard.

Let's keep the conversation going. Please stay in touch.
hellogobbo@gmail.com

Seasonal beauty. Lily of the Valley

Benzodiazepine Healing -- Let There Be Light

1/3/2021

'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!

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!

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

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.

Trail view

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.

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

Signs 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.

Work 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

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.

Evocative 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.

A 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

My Fifth-Year Anniversary

4/19/2019

From 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.

A 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.

Feeling 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.

Operating in Hyper Mode

12/20/2018

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.

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.
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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.

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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Rock climbing and the healing journey from benzodiazepine damage* ​By Matt Samet

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Rock climbing and the healing journey from benzodiazepine damage*
By Matt Samet