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Still Standing (Sort Of)

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.

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

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?

In the editing room. Powering through.

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.

Please join us. Join our team.

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