Blog & Notes

Jen's Story: Escaping Her Benzo Nightmare

10/10/2019

Benzodiazepine survivor Jen Niles

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

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

Honoring her suffering: In the shadow of darkness I stand in the light.

My story is a long one, but the short version of it goes something like this:

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

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

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

The adverse effects that followed shortly after were absolute hell and led to to a misdiagnosis of bipolar. The truth is I was greatly influenced by a new person in my personal life. I was vulnerable and that person encouraged my identification with that label without the benefit of proper medical evaluation. I was not able to see or understand anything clearly once Klonopin was in my system for a few weeks. I was lost, and my ability to make good decisions was very poor. I never experienced the true definition of mania, and didn’t go into psychosis, yet I carried a label of bipolar with me until this year when I finally had it reversed in my records once free of all pharmaceuticals. I spent seventeen years unnecessarily medicated, and the last several of those on disability from being unable to ever hold down full-time work. I lived a life on drugs that altered my cognitive function and abilities, regardless of never touching anything recreational or ever drinking alcohol along with it. The only substances in my body were prescribed, and they robbed me of a real life.

It was in 2012 I realized Klonopin was the source of my problems, but I had no idea how to get out of a hole that was so deep. By 2015 I was at a point where I had done an extensive amount of self-work, and was able to do things that used to be impossible for me. I realized I was finally ready to face the withdrawal of Klonopin, the low dose antipsychotic, and the mood stabilizer treating its side effects. I set the date of January 1st, 2016 to begin. I read endless information on the internet to prepare myself, created my taper plan, and set out on a three-plus year journey to take myself off everything and find the happiness I knew was inside of me if I could just rid myself of the layers of chemical misery covering up who I really was. I was lucky to have a psychiatrist who was thrilled to help me off of my medication because she didn’t think I needed them. She didn’t understand at first how slowly Klonopin had to be tapered, which just goes to show that there are professionals with a patient’s best interests at heart but without proper information or experience tapering someone off a benzodiazepine.

I am very grateful to be where I’m at now, even though I am still essentially penniless and don’t yet have a Bachelor’s degree. I consider my life to be better than a college education, as I got an inside look floating through various doctors’ and mental health professionals’ offices, finding all their information loopholes and gaps, and the knowledge deficits in need of repair, so that the system that treated me finally allowed something more effective for my personal wellness. And now I want the same for others. People should not have to spend a significant part of their lives being chemically-altered and damaged. Climbing out of that hole was my greatest feat in life so far. And now I want to let others know that escape from a doctor-prescribed chemical nightmare is possible. I am in training to be a peer support counselor, in part, so that I can help others understand and free themselves safely from benzodiazepines and other psychotropic medications that should, if they’re anything like me, never have been prescribed to them.

Jen testifying in support of informed-consent legislation for benzos at the Massachusetts State House on September 19, 2019.

Stay in touch with us. hellogobbo@gmail.com

My Fifth-Year Anniversary

4/19/2019

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.
.
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

December 20th, 2018

12/20/2018

Summer Fundraiser

7/10/2018

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

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

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

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

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

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

Help us finish As Prescribed.

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

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

As Prescribed Donation Page

inVISIBLE

6/6/2018

Be visible - easier said than done. That’s what we’re trying to do a little bit at a time, wherever we can. Our joint T-shirt campaign with World Benzodiazepine Awareness Day and Benzodiazepine Information Coalition will help us all move a little closer to our shared goal -- awareness of benzodiazepine withdrawal syndrome as a serious and very real invisible illness.

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

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

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

T-shirts available here!

Oh Doctor, My Doctor...You Let Me Down

4/20/2018

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.

Keep healing.
Keep the faith.
And please stay in touch.
hellogobbo@gmail.com

What followed today. A nice walk in Central Park. Salve for the soul.

Still Standing (Sort Of)

2/18/2018

Jocelyn and Paul Pedersen with their daughter Lucy and the Gobbo crew. All looked shiny and bright for a bit.

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.

In the editing room. Powering through.

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. The end is in sight. This is the year that we will finish As Prescribed. This is the year that we will prepare the film for its release. 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.

Please join us. Join our team. hellogobbo@gmail.com

My recipe for GABA receptor reconstruction. Warning: Do not try if you have difficulty with supplements.

Only In New York: Meeting the Decision-Makers

11/16/2017

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.

Courage,
Holly

hollyhardman88@gmail.com

"People over Profits"

9/23/2017

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.

https://rightcarealliance.org/article/film-highlights-harm-benzo-overuse/

<<Previous

Archives