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.
T-shirts available here!
I went along with my neurologist Dr. Sun’s suggestion to have a second epidural for my ruptured disc the other day. The first had helped quite a bit; it took the pain level down by 50% within a few days. With physical therapy I've been feeling better and better as the days pass. Usually there is no pain, but when it kicks in (especially while sitting) I'm reminded that I'm still in recovery mode. I have much traveling to do next week with lots of sitting on about a half dozen flights, so I agreed to have a second epidural. When I met the doctor who performed the epidural - I’ll call him Dr. R - he seemed delighted to know that I wanted to avoid taking a benzodiazepine for the procedure. When I told him that I was working on a documentary about benzodiazepines and their dangers, Dr. R told me that he would welcome speaking about benzodiazepines with me. I was psyched. After the procedure, he even remarked on how well I had done without any medication to quell patient anxiety. On the other hand, the nurses who prepped me seemed to roll their eyes when I said that I consider myself to be allergic to benzodiazepines. One nurse expressed dismay when I said that I know of many people who have problems with them.
I was excited to see Dr. R. on this return visit. I have been meeting more and more doctors who know there is a problem. And I looked forward to connecting with one more doctor who is fed up with big pharma marketing lies and skewed clinical trials, a maverick who is ready to speak out, I hoped. Dr. R. is affiliated with a world-renowned hospital in New York, and is in a position to do something…
Yesterday was the scheduled day for my follow-up procedure with Dr. R. I hadn't received an email from his office with the information I needed to prep for the procedure. I called his office to double-check on their admissions policy, etc. The woman who took my call started giving me a hard time immediately. As it turned out they had sent the instructions to an incorrect email address. Insert groaning emoji. When I arrived for the appt. at the ascribed hour, I was told I was supposed to talk to the doctor. Okay, where do I go? The receptionist mumbled an uncertainty and sent me in the direction of the pre-op area. They had already moved the appt. forward from 3 to 4:30. I didn't mind. The doctor finally appeared shortly after 5. Great. Don't you like to be assured that everything is going to go all right, that you're in good hands? Instead Dr R. was annoyed with me. It seems as though there had been a miscommunication about follow-up after the initial procedure. Of course this was my fault he told me. That was how he greeted me. Oh, and he also told me that he had no memory of treating me before. Remember that incorrect email address? Hmm. He proceeded to tell me that he didn't have reliable information about what he was treating, and again blamed me for not connecting with him after the last procedure. Huh? He went on vacation the day after the initial epidural. He was heading off on a spring break vacation, but was supposed to have called me. If he did, I never got the message. Though my wonderful neurologist Dr. Sun checked on me twice. He called me on a Saturday and a Sunday, even though he too was flying off on a spring break getaway. Clearly Dr. R didn’t try too hard to reach me.
Sitting there in a damn hospital gown opened at the back and very much wanting to get this over with, it struck me that the wise thing to do was to ask if we shouldn't reschedule. Of course he back-tracked and said he was fully prepared to do the epidural. I thought of my neurologists’s encouraging words; he really believes in this guy. I had no major worries, but…Soon enough I was escorted to his theatre. I was feeling some anxiety, and it increased when he had to rethink the needle entry point because it was a little more complicated than the last time. And there was another adjustment when there was a vascular issue he hadn’t anticipated. I asked if something was wrong. Yes, I felt nervous. But I didn't do anything to impede his ability to do the procedure. When it was over, I expressed my relief that it was done. I didn't apologize for being nervous but I did say something to the effect that it was not easy. His retort: Because you didn't take an Ativan before the procedure. His pride in my former courage had morphed into today’s message: You are a weak, bothersome, overreacting patient. Hey look, I'd love to feel safe about taking a benzodiazepine for just this purpose. Dr. Ashton believes that many who fall into my category (straightforward benzodiazepine discontinuation) can take a benzodiazepine for just this purpose once the CNS has healed from benzo injury. But I'm not there yet. I might never be. And I want doctors, nurses, and healthcare workers to understand the full scope of the dangers involved. Slowly but surely benzo awareness is happening. Though my hopes for this possible bright star Dr R have been dashed.
But my neurologist -- he's a believer. And that is where I will go for my follow-up.
Did I mention that the physician’s assistant on duty offered me Ativan within a minute of snapping a warning bracelet for my benzodiazepine allergy on my wrist? Yeah, she did that. Yes, that happened.
Another rough assembly scene cut. Another grant application completed. Check. I managed to meet my major goals this week, despite a continuing and debilitating mystery pain that reared its ugly head in January and continues to taunt me mercilessly. There was no drama, no slip or fall, other than what felt like a slight muscle or disc shift in my left hip area that quickly became full-on shooting pain from my hip, across my groin and down my left leg. This happened within 48 hours of heading out for an important shoot in Utah and Colorado. Part of me knew that I would pay if I didn’t tend to the pain right away. But that was not possible. Everything was in place for filming, and no way was I going to delay or cancel this shoot.
I pushed through with some help from a massage therapist and a chiropractor in Salt Lake City. Thank you to Jocelyn and Paul Pedersen for the recommendation and the magic salve. And thank you to Scott Shelley, our illustrious DP, for buying a heating pad for me when we arrived in Colorado. So I had some relief. Alas, it was temporary. Since returning back east the pain (the raw-nerve kind) has been plaguing me pretty much non-stop during my waking hours.
I’ve been in NYC (Brooklyn, actually) editing, so I was able to visit My PCP in Manhattan. She diagnosed the pain as sciatica because I have lost my left knee-jerk reflex. Nope, I know sciatica and sciatica is a tame tiger compared to this. She also suggested that I take Gabapentin for the pain. This is the same PCP who some years ago allowed me to taper off Klonopin at my own rate, even though she knew very little about benzo tolerance and withdrawal syndrome. She only knew that benzos had a bad reputation and did not prescribe them. She made a special case for my taper. I like her and am grateful to her. But Gabapentin? Why does she not realize Gabapentin can create its own version of hell?
I agreed to take an anti-inflammatory. I filled the prescription, took two, and they have done NOTHING other than upset my stomach. They did not touch the pain. A month later, after trying physical therapy, somatic therapy, jin shin do, heating pads, various herbs and healing creams, nothing is working. But you know what’s strange? At a certain point, I was able to sleep again. Why all this intolerable pain during my waking hours, but a reprieve that allows me to sleep? And why do I get relief when I walk some days, when the next day walking worsens it?
After a painful walk in Central Park yesterday, I decided I to call it a day and head downtown to run an errand. Because some of the worst pain is when I sit, the long, bumpy taxi ride downtown was pretty horrific. But I made it and hobbled into G&G on Broome to pick up an alteration. It seemed as though that should be easy enough. Go in, retrieve my clothing, then head back uptown. But the clerk could not find my clothing, and I could not stand standing. You know that kind of pain when you are bent over, screaming inwardly, making creepy involuntary facial distortions. That's what I was doing while the G&G’s clerks could not find my clothing. I left not caring about a missing dress or pair of slacks. I lost sight of what they were holding of mine, and I did not care. I cared more about returning to my couch uptown.
Back in the apartment, it only got worse. I was collapsing from the weight of it, gasping and shaking, begging the universe to release me from this pain. In a state of enlightened-delirium, it dawned on me that this misery used to be part of my everyday existence for long weeks and months when I was in tolerance. This mystery pain that plagued me off and on for years, it's back again.
Really, I think the ghost of my benzo past is rearing its ugly head, paying an unwelcome visit and attacking my central nervous system, focusing on my poor psoas muscle and whatever else that might entail. I had never even heard of the psoas muscle till I was tapering off of Klonopin and posed a question on BenzoBuddies. Oh, how I relied on BenzoBuddies. I’d enter my current worst symptom, find threads on the topic, weigh advice, and often enough find life-saving solutions. A buddy might recommend a supplement, an exercise, a link to a good meditation site, or helpful essays and articles. That is how I learned about Matt Samet and his book Death Grip. Read it, if you haven’t. When we first filmed Matt, he was dealing with a monster return of symptoms, and he connected it to stress and heavy intake of caffeine, basically snacking on coffee beans. I think of all the people around the world dealing with benzo damage right now. My pain is nothing compared to the unceasing pain that so many people with iatrogenic benzo damage feel non-stop. I thank God and the universe that I have healed. I pray for all to be released from their benzo suffering. This I pray every day.
My current pain experience is a reminder that I am still vulnerable. So I am reverting to methods I used during my slow taper, renewing a focus on rebuilding GABA receptors. I believe they took a hit. I have never been a true coffee drinker (only decaf), but I wanted to join the coffee culture. I had been admiring it from afar, and hoped that I could enjoy this aspect of life like a normal human being. I had been drinking real coffee, at least a cup almost every, for the previous two months. Am I still so sensitive? Do we remain that sensitive? Some yes, some no, it seems. I think most people would scoff at the coffee connection, but my fellow benzo survivors know better.
I power through. I have no choice. We have come so far. This is the year we hope to finish As Prescribed. We have an amazing team, and more are showing support and coming on board as we move toward our ultimate goal — to get the film finished and get it out into the world.
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The world seems to be in a terrible mess right now. Things only seem to have gotten worse since that fateful day a year ago when you-know-who managed to win the electoral vote. Perhaps it is normal to think obsessively about this, perhaps not. It’s certainly not healthy, and I look for alternatives. I was fortunate this week. As Prescribed was selected for DOC NYC’s Only In New York program, an opportunity for films-in-progress to meet with documentary industry leaders. I found myself surrounded by people dedicated to making the world a better place. Because that is what the documentary world is — a culture of creators who believe that the documentary form is their best way to better society and life on the planet.
I just finished four days of meetings where I had the chance to connect with decision-makers who have the power to decide the fate of As Prescribed. As hard as we’ve been working on the film, I am sure that As Prescribed was not an easy pick for the OINY committee. It can be difficult for decision-makers to embrace a film like As Prescribed because the tendency is to assume that not only will our film lecture to an audience (no, we aren’t going to do that), but will present stories in a false agenda-driven fashion, as opposed to allowing our story to grow organically and consider other points of view (which is what we are doing). It seems that they realized that we were on the preferable course; I am, of course, grateful.
There were group meetings every morning. I was frantic to get downtown on time the first three days so took a cab, arriving on time each morning. This morning, Thursday, the last day, I thought I could let go of worry and take the subway. Bad call. After an unexpected (to me) delay, everyone on the train had to get off at 59th Street. An emergency of some sort. So I ran up to street level and grabbed a cab. I got the impression that this driver knew what was up with traffic. Twenty minutes later I realized that he didn’t. I did my best to remain calm, but demanded that we change course, head west, and book down 9th Ave., which was, in fact, much quicker, but not quick enough to make up for all the lost time. So I was late for the only morning meeting that started at 10 am sharp. This did not go over well with the industry luminary I was hoping to meet. I pitched; his eyes glazed; and then someone at the table made a joke about Xanax as a segue into their pitch — the “I-could-use-a -Xanax-right-now” joke, which made me cringe, and I said something and I probably shouldn’t have, I know. Then I assured her I was joking. But I wasn’t. She has a wonderful project, so all is forgiven. We’re all on a benzo learning curve, I remind myself.
So that meeting was not so great, but most were, even though I continue to quietly deal with post-benzo/post-concussion symptoms more often than I like. I had my share of cog fog and dizziness, but I managed. Maybe not perfectly, but I managed. I can still have trouble with lights, too. Not always, but it still happens and it’s disconcerting and undermining. I wish my younger, healthier, more confident self could be handling all this. But reality dictates otherwise. And even though they went well, and I was happy with my pitches, the meetings were challenging. Not everyone really wanted to hear about the film or cared about the topic. There were other glazed-over eyes, and I know there were those who dismissed me and the film. It can be difficult for people to wrap their heads around our film. After all, it’s about a drug that is known to cause dependency, but isn’t about addiction. Hmm. People certainly nodded, as though they understood or agreed, but we know that it takes more than a few quick sentences to make this invisible injury understood. And therein lies the basic need for the film. When an audience sees people living it, the benzo nightmare, in the finished film, much will be explained, illustrated, and I predict that audiences will engage viscerally and emotionally, and the will “get it.” And, I’m relieved to report that there were, indeed, decision-makers who “got it” based on our conversations this week. So we’re still on track.
I met with festival directors, outreach strategists, broadcast executives, sales agents, and distributors. I saw familiar faces, and even ran into the cool guy who did the trailer for my first feature film over fifteen years ago. And we recognized each other, which was also pretty cool. I also had a chance to say hello to our office neighbor in Brooklyn who has produced some of the most amazing documentaries ever made. Seriously, she produced Life, Animated; Ai Weiwei: Never Sorry; and God Loves Uganda. Wow.
But back to the real world of diminishing rights, environmental disasters, and the benzo beast. On Instagram I caught word of another celebrity drug-related/Xanax-connected death — Lil Peep, whose story will be covered around the world, and will propagate the benzo abuse narrative. In his case, it certainly seems to be true. As sad as it is to lose anyone to drugs, I worry that the real benzo story will remain obscured. I have to keep working to tell the truer story about the 90%, the benzo victims who did not seek a drug high, who took a benzodiazepine as prescribed; the story of those who are tortured while in benzo tolerance, or while tapering off, or in lingering post-benzo hell.
There was another benzo death this week, a suicide. David Bromberg, I’m thinking of David right now. And I’m thinking of Joseph Leff (October), Jonathan Wagner (May), and Allison’s sister, who made emergency room visits to no avail. The connection between her seizures and lorazepam was not made. She did not make it.
Certainly my heart goes out to Lil Peep and his fans. But my heart, my soul, my purpose, and my life go out to David, Joseph, Jonathan, Allison’s sister, and to all who are the ultimate victims of benzo hell. RIP.
How wonderful it is when you can connect with people who share your purpose and your vision. One of the challenges I encounter when trying to share the topic and reason for As Prescribed with the non-benzo-afflicted is finding people who can wrap their heads around this strange iatrogenic illness without having experienced this special hell themselves. I think that most who have been through the benzo nightmare want desperately to get the word out about the risk benzodiazepines pose and to warn others away from potential harm. The shared lament is: “I wouldn’t wish this on anyone, not even on my worst enemy.” But let’s forget about enemies, and talk about new friends.
I recently met with Aaron Toleos and Judith Garber at the Lown Institute/Right Care Alliance in Boston. It was particularly encouraging to meet with two advocates for justice in the healthcare system who were open to hearing about benzodiazepine syndrome and As Prescribed. We discovered that we all share the broader purpose of righting wrongs in our current healthcare system, and as Aaron stated, putting “people over profits.”
They are now in the process of organizing Right Care Action Week. I hope that people across the country join in and participate to make it a huge success.
Judith was even so kind as to write a blog post about As Prescribed that's linked here. Please check it out.
When I read the news of Chris Cornell’s death, I wanted so badly to believe that there was some justice to it. I wanted to believe that he had made a choice with eyes open. Then I read that he was taking Ativan (lorazepam) for anxiety or depression. I felt sick. I think that anybody who has an accurate understanding of the nature of benzodiazepines knew right away that the depression-led-to-suicide story was likely bollocks. Hats off to his wife Vicky for speaking up immediately to challenge the merit of the suicide claim, and, thankfully, placed the question of the connection to Ativan in the public sphere. It appears that she was beginning to wonder about the effect Ativan was having on her husband. Oh, how badly those of us who are trying to spread awareness about benzodiazepine dangers wish that our efforts had reached Cornell and his family sooner. How we wish every day that we could reach anybody and everybody who is suffering from harmful benzo effects, how we wish to reach anybody and everybody who is unaware that their mysterious symptoms, their strange anxiety, their unexplainable depression, is actually caused by their doctor-prescribed benzodiazepine; caused by the drug that’s supposed to be making them feel better, not the drug that is secretly destroying their lives.
Benzo hell is difficult to understand unless you’ve been through it. We have been fed a narrative about drug addiction as a lifelong disease that asks us to accept the notion that all drugs that create a physiological dependency also create the disease of drug abuse and addiction. The unlucky benzo-harmed can testify that the benzodiazepine narrative is not about addiction per se; except for a limited sub-set, it is not about wanting to get high or making a chemical escape from the world. Damn, so many of us feel nothing and prefer it that way. We took a medication that our doctors said would help us; we took something that we were told would benefit our health and well-being, something that was supposed to be safe. The true benzodiazepine narrative is about outrageously high numbers of drug harm stories — about profound CNS damage, brain change, and physiological dysfunction. It is not a story about addiction.
Yes, yes, I realize that Chris Cornell had a history of drug abuse that fits the common addiction narrative. But I believe his family when they speak about how satisfied he was with his life at this time. He had success and purpose and love on deep levels. And he seemed to have an awareness and feel a sense of gratitude about making it through years of dark times. The demons that remained were old familiars that could be tamed. But, so typical with recovering addicts, some ill-informed doctor was happy enough to prescribe that harmless little anti-anxiety agent Ativan, something that could help with occasional panic attacks and the pressures of touring and playing to audiences of 50,000. When the show was over and the pressure was off, he should have been able to restore balance safely; he should have been able to head home and be with his family, his heart.
He had suicidal thoughts, they wrote. Suicidal thoughts? That’s not strong enough. That’s not accurate. Suicidal ideation. That’s what it’s called. I think you have had to experience it to understand how ordinary and measly a suicidal thought is compared to suicidal ideation. Suicidal ideation. Something that happens too often when the unlucky are dealing with benzo tolerance, benzo kindling, even during a safe benzodiazepine taper. Try to convince me that this is not exactly what Chris was dealing with. Sure, I’ve been there, but I was much more fortunate. I knew that that particular cruel trickery was part of the benzo experience. I could find that on BenzoBuddies. It’s a common topic of discussion there as well as in the benzo Facebook groups. I weep thinking that Chris had little knowledge about what he was thinking and feeling, about the horror he was experiencing. I have a cynic’s hunch that his doctor never talked to him about suicidal ideation and Ativan.
And so we lose another beautiful soul, another amazing talent, another who made our lives better, another who leaves behind a family who loves him and needs him. How common is this story? In the world of non-celebrity, it is a daily occurrence. The benzodiazepine epidemic is real. And the information that most doctors tell their patients about these drugs is wrong, skewed, and keeping the epidemic alive, causing heartbreak and loss and death every day. Yes, every bloody day.
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So here I am, a few years post-taper and coming out of a more recent recovery from concussion-induced TBI. Though let me qualify that, and please note that this is conjecture: Both my neurologist and I do believe that, at the very least, a background that includes harm from a benzodiazepine creates lasting neurological vulnerability. In other words, it just makes things worse if the brain receives a follow-up assault of some sort — e.g., a concussion, extreme stress, or the reintroduction of a benzodiazepine. Thank heavens no doctor ever suggested that I take a benzo post-concussion; but trust me, the prescribing of benzodiazepines for post-concussion anxiety continues. I see this on the TBI/post-concussion boards regularly. Yes, many doctors still prescribe a drug that causes brain damage to help people with brain damage. The irony is painful.
To those who worry about long-term damage from a benzodiazepine, I want to state upfront than I am now feeling pretty great. So I am one more story of post-benzo success, and it is probably not surprising that I am trying to enjoy life as much as possible, even trying to make up for the lost times. For too much of my daughter’s childhood, I heard the annual lament: Why can’t we go on vacation? When will you be better? And specifically, when can we go back to our island? Our island is a place where I made extensive visits, even lived, off an on through the 90’s until it just became too busy, too branded, and too expensive. We continued to visit for shorter periods. Despite the island’s frenzy of overbuilding and reaching for an over-the-top face of jet-set glitter, I could always find corners that were sublime and connect with old friends. It was my paradise, and I could not imagine living without it. But a benzodiazepine has a way of playing with the imagination, doesn’t it? It’s a cruel game. Forget about life as you know it. Let’s take your imagination to places you never conceived existed, let’s watch you suffer beyond measure, let's escort you to the depths of hell, the benzo taunts.
Vacation? Travel for enjoyment? No way. Even if I could have afforded it (those finances sure do take a hit), I could not have made the trip. What was the sense? It was such hard work, just being. Any thoughts of pleasure were relegated to elusive knowledge that I used to actually feel life and enjoy it, thoughts now stored in some remote region of my disintegrating memory bank. My anhedonia was ever-present. My emotions were ideas of emotions. Nothing felt. So strange.
And there was that other “a” word: Akathisia, that horrific feeling that you are about to jump out of your skin, that there exists in you some sort of phantom tormenting force. It pushed and paralyzed me simultaneously. It cannot justly be described as an uncomfortable feeling. Discomfort is tolerable. No, akathisia is a beastly torture within. Even the knowledge that it is physiological and will end is cold comfort. Akathisia is agony. I’ll say it again. Agony. Life lived behind one of hell’s gates.
Let’s move on to “a” word number three: Aphasia — a totally frustrating inability to communicate as desired. I recall a colleague posting her exasperation after speaking with me on the phone in a career-damaging Facebook post. Should I have said: Accept me, please. My thoughts are sound. I just cannot form words or sentences properly right now. You see, I am tapering off a misprescribed medication. You understand, right? Ha! I think not. I stuttered and stumbled though conversations. It was soul-crushing. How lovely if a vacation getaway could solve that little problem while I was tapering. But that was not possible. The thought of negotiating friendly, simple vacation banter was beyond me. Aphasia, I’ll be succinct. Fuck you. And fuck you twice because I am still dealing with you.
Should I mention one more “a” word? Why not? Adrenals. Wrecked adrenals as part of benzo-induced HPA Axis Dysfunction. Oh, benzo-damaged adrenals, how didst thou affect my ability to function? How may I count the ways? I’ll mention a couple of my favorites. How about those round-the-clock inner tremors and those extended, hammering cortisol surges? Part and parcel of your fiendish game.
When I finally figured out a method of navigating around Benzo Buddies during the toughest months of my taper, I liked to find posts and threads written by fellow taperers who dared to do amazingly brave things like go camping, or to Disney World, or to a family reunion, that sort of thing. I found it hard to believe that these buddies made it through their travel adventures, but they did. Some were further along in their healing, but others white-knuckled it during a tough taper, and I recall one cold-turkey victim managing a visit to relatives. I can’t say that I sensed much enjoyment experienced, but they survived. All shared a sense of hard-won accomplishment. They gave me hope when I doubted. They gave me pictures of something I could dream about. We need our hopes and dreams. How they sustain us when it seems as though all is lost.
Now that I am feeling like myself again, my daughter recently pushed for a return to our island. When my tax refund came, I thought, why not? It is time. So here we are, and here I am, still celebrating every day, despite our messed up world, thanking God, the universe, whomever, whatever, for allowing me to find my way back to a version of me again — definitely older, with a few extra pounds, and perhaps a little bit wiser. You know, I often have that wonderful “take-life-for-granted” feeling these days. But I don’t. I am vigilant, and my sense of gratitude runs too deep.
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How fortunate I am to be able to share the news that Gobbo Films now has an additional staff member, and a most talented and able one at that! Allow me to introduce Sofia Adams. Gobbo cinematographer Josh Weinhaus introduced me to Sofia remotely last June when he brought her on to assist on our June location shoot in Easthampton, MA. Sofia and I finally worked on location together this month in Boston. Over dinner after a successful day of filming, we compared notes, and decided that our needs mesh well — hers for a steadier job in film and mine for desperately-needed assistance.
So let me tell you about Sofia. She is a recent Tufts University graduate with a degree that not only sounds impressive (B.A. in International Literary and Visual Studies with a minor in Communications and Media Studies), it truly represents years of meaningful accomplishment as an undergraduate. While a student, Sofia edited and worked on a film about palliative care in Kenya that was produced by the Open Society Foundation and Tufts Institute for Global Leadership. She also co-directed and co-produced a documentary about the contentious political battles being fought over organic farming. She worked in a number of capacities on the celebrated documentary The Year We Thought About Love. And perhaps too good to be true, I learned that Sofia’s background also includes graphic design and social media work for Tufts Women’s Center and the New England Center for Investigative Reporting.
I am beyond thrilled to welcome Sofia, and I hope that all As Prescribed friends and supporters will do so as well. Sofia believes wholeheartedly in the film and our cause.
Now let’s get on with it. We have a ton of work to do!
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I live in a fairly rural area and am dependent on my car to get around for my basic needs such as food and, well, just about everything. Driving is not something I take for granted these days. I had lost the ability to drive a car with comfort and confidence for many years. I only drove when it was absolutely essential, and when I did, it was a scary proposition. These are memories I would prefer not to summon. But I, like so many of us, need to tell my benzo tale often enough, as distressing as it is.
As my CNS continues to heal and I regain my health and my life, I venture farther and farther in my car. Traffic lights and left-hand turns do not challenge my processing abilities as they did so mysteriously for nearly ten years. The real me used to drive the Los Angeles streets and highways with ease. My refuge was my car; the radio set and cranked to KXLU or KROQ, driving the 10 or the 101 or the 405 and loving life. The real me used to make back and forth trips from Manhattan to Woodstock at least once a week, reveling in my black roadster’s ability to turn easily and accelerate quickly. Funny how I started having trouble (feeling panicky) when I bore left onto the Tappan Zee Bridge as I headed south on the NY State Thruway. A piece of cake started to become a dreaded, overwhelming task. There was no reason for me to connect my panic to my sporadic use of Klonopin. After all, I did not take it to steady myself for those drives. And I had never heard of tolerance withdrawal. Certainly my doctor never suggested that my new driving problem could have anything to do with a medication she encouraged me to take for sleep or routine stresses. As a matter of fact, she suggested I take Xanax to help my growing driving anxiety. Note: I did not take her advice. I thought it was a bad idea. Drugs to drive? Not me.
But I continued taking Klonopin often enough to handle a stressful meeting or get a good night’s sleep; and without realizing it, I was, of course, in the thick of tolerance withdrawal. By the time I started to have rolling panic attacks while driving, I was doomed. Once you start having rolling panic attacks that you know are not based on real fears or any reasonable sort of anxiety, you’re kind of done for. The verdict is in. The CNS is letting you know that it is very messed up. You are in crisis.
More than likely you are the one to start wondering about the benzo connection because it is highly improbable that your doctor put 2+2 together. It is easy enough to find information with a simple google search. Just check “stopping Klonopin” on Wikipedia. I am eternally grateful to Wikipedia. Wikipedia knew much more than my doctor about the dangers of benzodiazepines and about the need to wean slowly. I do not go to that doctor anymore. I was lucky enough to find a new doctor who was willing to oversee a safe taper after I sent her my new find, the Ashton Manual.
But oh, it was not easy. My most basic sense of self and reality was shaken, distorted, cruelly undermined. I became a teenage existentialist again. What is this craziness, this sad life? What is this consciousness when all feels so distant and unfamiliar and strange and frightening? And as I drove, performing the essentials that felt so foreign, desperately grasping the steering wheel, an unreal lifeline to all that I had lost, all that I could not do, light years away from that simple reality that I used to take for granted, that I might never retrieve. Trying to make sense of the road before me. Were humans designed for this? What is this crazy constellation of roadways, these monstrous patterns that I must somehow navigate when nothing seems real and nothing seems to work? This is unnatural. This is too much! No! No! No! I can’t take it!
But now that I am returning to myself again, with upregulated GABA receptors and most of my vestibular and ocular function restored, my wildest, most peculiar processing issues have disappeared. And I now glide down highways, feeling zen and right with my world and my place in the universe in this post-industrial-information-and-tech-age-climate-change-let’s-please-save-the-earth-era. And I may suggest that we add Pharma Epoch to the list? Think about it.
No more are we prey for saber tooth tigers. And long ago we stopped listening to alchemists who had us inhaling mercury vapors. And, safe to say, our humours now remain intact; the bloodletters no longer drain us of our life force. But, being of our times, this Pharma Epoch, we are the unlucky victims of our age’s current form of medical malfeasance at the hands of the marketing gods and the healthcare providers who serve them. Once we catch on, we find our tribe, our fellow benzo sufferers. We gather together, we support each other, and we survive. In this misguided pharma age, we represent an extreme. We have been forced against our will to a take a painful and tortuous life path. Though together we are learning our way back to ourselves. We are surviving. We are meant to be. And we are meant to tell the tale.
Oh, and the stories we will pass down to future generations — tales of cruelty and madness from the 20th and 21st century Pharma Epoch. May we be part of this regrettable era's evolution toward more humane and effective treatment and care for humankind.
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