An open letter to Tony Robbins. Let's raise awareness together and reach out to someone that was touched by this personally!
I know this is a long shot but I had the idea to write you after seeing your fantastic inspiring documentary. All of what you symbolize and stand for is what I am trying to do in my life right now. I wanted to write you to bring awareness nationally and globally about an issue that might be close to your heart. You see, I am an accidental addict. I am a valium addict. I am also a mother, a professional, a wife and a spiritual seeker.
I never thought in a million years that I could or would be an ‘addict’. I haven’t had a drink in over twenty years because of health issues, I drink green smoothies and shun prescriptions. But here I am, being the mother I never wanted to be, being the person I never imagined I would be-sick, preoccupied, unavailable, unreachable. I think this is happening FOR me not TO me, but it’s honestly the most brutal couple of years in my life and my life hasn’t been easy. And there are so many of us out there with similar stories—‘accidental addicts’ that were misled, misguided, misinformed then shamed and dismissed by the medical community.
I am in my forties now and the mother of two boys ages 4 and 6. I grew up with abuse, abandonment, sex and love addiction, neglect, narcissism, and fear. There were good things too like humor, culture, art and a focus on education. I used all of this to build a successful business but it's all come to a screeching halt in benzo withdrawal.
When I was 25 I had a dark night of the soul. Only I didn’t know what it was at the time. It took me many years to understand what was happening to me wasn’t just physical but also emotional and deeply spiritual. I developed a condition called Interstitial Cystitis (severe bladder and pelvic pain) which dominated my life for 8 years. Every day I had a hidden ‘private’pain that no one could see. In my teens I battled anorexia. This pain in my mind was just another opportunity for masochism and another manifestation of my early trauma. I was a good patient. I went to doctor after doctor. They prescribed me valium to relax my pelvic muscles. I was ignorant. I didn’t even know what valium was, but they assured me it was ok since it was at a very low dose. So, I shunned pain pills, endured years of chronic pain and fought a silent battle. I built a successful business but I was still in pain. My valium use came and went and I never gave it a second thought because I would use it in ‘flare ups’ then stop it as needed. It never dawned on me that it was messing with my nervous system something crazy and the beast of withdrawal would hit me some 20 years later. At one low point, I remember listening to Carolyn Myss and saying to myself, “Ok, your life is going to be small and you are here to serve others just accept it”. Relationship after relationship fell away because I couldn’t have sex and was sick, and my heart grew more and more shattered. But I surrendered to a life without a partner and a life of service. Some people are in wheelchairs, and this was my cross to bear I thought. I had tried everything and anything under the sun but couldn’t seem to tackle this pelvic pain—symbolic of my inability to let a man in, to fully give and receive love. I was guarded and protected even though I yearned more than anything to open my heart and to love and be loved by someone.
The years went by and I miraculously met a man I felt safe with who accepted me as I was. I got on a new medication called Elmiron and got into a remission that lasted 7-8 years. I no longer thought, acted and felt sick. I was well. As well as I could be, and I was grateful. During this time, valium left my life and I got pregnant and had two children—something no one in my life believed I could ever do. But I believed.
Enter kids, sleeplessness, what was once a safe marriage became a disconnected marriage. I was aggressive and tired, he was passive and resentful of having to ‘rescue’ me or take care of me. I worked around the clock while he underworked. We were under financial and emotional strain. I started using valium here and there for sleep. Never thought twice about it again. Then two years ago I got sick with a virus, was given a steroid shot which I had a terrible reaction to and I went to an acupuncturist/MD whose words haunt me to this day. He said, “You aren’t an addict, you need to sleep—here take this” He handed me a prescription of klonopin and Ativan at a dosage unbeknownst to me that was 5-10 times as strong as the little 1mg pill I took occasionally. I took it 3 times per week for 4 mos so I could sleep and take care of my kids and work while my husband was on a job. That’s all it took. I had been severely kindled from my previous usage and damaged from the steroids. My immune system was compromised. When I stopped one day I went into severe cold turkey. What I felt was indescribable. I literally cannot put it into words. Imagine being lit on fire but you have nowhere to go. Imagine you can’t sleep and every nerve is on fire and you just want to jump out of a fucking window to get relief. Benzo terror. Madness. Electrolytes dangerously low, twitching from head to toe. It took me 3 weeks to figure out it was withdrawal, I thought I had ALS or was having a heart attack. I was so ignorant. So stupid. So clueless. I have to forgive myself. My doctor screamed at me saying “ I don’t know what this is you could have an autoimmune brain disease you are crazy right now”. I was in benzo withdrawal. That is what it was. Nothing too exotic. Just under recognized and misunderstood by even the smartest doctors. My story is a common story. I am not a unique butterfly. It is a story SO MANY people are enduring and losing years of their lives because of it.
My symptoms were so severe, there was no other way but back on the medication, this time at a higher dose to calm things down. My nervous system went into what I can only describe as a state of shock. I tried again to get off in 6 weeks confident that I could do it, but crashed landed and almost landed in a psych hospital yet again. I felt fucked.
Now I am on a year long taper off 5mg of valium. Sounds stupid. Sounds insignificant. But it has been one of the most harrowing experiences of my life. I am fucking scared Tony. My life, my children, my business all of it is about to be let go of. Tony, check out the website benzobuddies. Check out Baylissa Frederick and her amazing work with over 8,000 people addicted to benzos. Check out Jennifer Leigh PsyD another benzo warrior who counsels people. There aren’t many people who understand this in this country. Almost none. Not just benzo withdrawal but protracted withdrawal that people suffer from for several years.
I feel like I have to do something about this epidemic and what it is doing to so many mothers, fathers, innocent people who were prescribed a benzo because of a chronic pain condition or a tic disorder or whatever else. It’s poison. One doctor I called just said," what’s the big deal just stay on it". This is some big wig at a big hospital locally. I don’t get it Tony. The awareness just isn’t there. Another doctor looked me dead in the eye and said “this is painful to watch”, “this isn’t your fault”, but it’s happening and I have to believe it’s happening for a reason Tony.
I didn’t know what was happening to my mind this last year. The benzo rage, the benzo terror, full body burning, the only way I can describe the experience is a year long LSD experience coupled with a big dose of methamphetamines. It’s harrowing. I know I sound fucking dramatic. But akathisia—where you literally cannot sit, stand, talk, eat for more than five minutes leads many people to suicide. It’s utterly unbearable. I have never in my life been suicidal but I have felt it in the depths of benzo withdrawal. I fucking love life. It’s the mindfucking medication and the unbearable symptoms they cause for some people. But there are people that are stuck on this shit for 20 years and a community of doctors that are completely clueless as to how to get people off only adding more labels to them when it is the benzos that are causing the harm. I am not crazy, I am not bipolar, I am not depressed, I am a neurotic fucking jewish girl from New York that has been unlucky on benzos. The doctors and pharmaceutical companies are causing harm and it needs to stop. People need to know about this.
There is a new documentary out called As Prescribed. The director, similar to me was prescribed benzos with an already fragile nervous system. She went through hell and back and documents a movie about people’s journey. Baylissa Frederick is the benzo angel who used to be in England but is now fighting the benzo fight here in the USA. Europe understands this issue but America does not. This medication has turned me into a zombie, a monster, a hideous version of myself, unrecognizable to my family and friends. I am traumatizing my children with my two year absence. I am fighting to save my career that I love and am devoted to. It’s hard to explain to anyone except to say on bad days or during “waves” one feels as if they are crawling out of their skin, restless, pacing, agitated with nowhere to hide. I am nearing the end of my taper (4-5 mos to go) and then will have to find a way to stop working and take time off. I am scared Tony, this is fucked up. I don’t have money to stop working for 6 months. Who will take care of my kids? Noone is talking about it, and if they are, the people that need to listen aren’t listening. My doctor told me I was the .05 percent. That I was having an extreme reaction. That might be true, but I am in contact with many many others across the country who were misled then shamed when they struggled to get off this poison. I am on the verge of losing my business, my marriage is about to be over and my kids are suffering immensely because of my absence. All because I stupidly trusted a doctor who assured me I wasn’t an addict. Well, I am sure as fuck am an addict now. And in the recovery rooms that I go to, I am worse off than the guy that did fucking street drugs for the last 15 years. I have tried starting an anonymous Accidental Addict meetup group in my area but many people are too freaked out or sick to attend. I am not well enough to pull it together at the moment but meetings like these are necessary in the future.
I am praying that there is a greater good here. I am already helping others, guiding them when I talk to people and tell me they have fibromyalgia or chronic fatigue etc. When I probe further they have been on a benzo for 15 years—guess what? They are in tolerance withdrawal. They don’t have any of those conditions doctors are labeling them with. Their chronic back pain, or neck pain or jaw pain or digestive issue, panic attacks? Benzos. All benzos. These aren’t people increasing their dosages. These are people who are instructed to take these meds and are doing so as prescribed with no warning, no education. Please help me get the word out about this.
I am trying to hold on but also surrender because I think I am having a spiritual awakening. I am done with suffering Tony. This is my last fucking hurrah of suffering. I am done. I will never fucking take for granted a moment of inner peace. And I want to help others who are suffering with this as well. People need to know. There needs to be resources, doctors, treatment centers and programs that can help people specifically with benzos which are a beast unto themselves, unlike many of the other withdrawals/detoxes in treatment centers which happen rapidly and leave people worse off than how they came in.
If you get a chance please visit my blog: www.unintentionaladdict.com. I am writing and sharing about my spiritual journey through this. No one is reading the blog, but that’s ok, it;'s more therapeutic than anything.
I am not a crazy person, I am a person who is ready to put my suffering down and am using this nightmarish benzo experience as a way to confront the fear and anger that I have carried all of my life. I am ready to put it down. I am ready to let go. When I get well, I want to help others because I am in the perfect position to do so. So are you.
Thank you for reading. You are fucking amazing.
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Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.