While in a stressful life situation, Jocelyn Pedersen was prescribed a category of antianxiety drugs called benzodiazepines. She was severely injured by trying to withdraw too rapidly from the medication and now works to educate patients and doctors about the effects of these drugs and how to heal from the trauma.
What was the beginning of your experience with the medication?
I hadn’t been sleeping for a few weeks because my daughter was in the hospital with meningitis. She was only a couple of months old and I was nursing her. I wasn’t sure what to do. I was very much into natural medicine and herbs and things like that. But I didn’t know what I could take while nursing a baby so I thought it would be safer to go to my doctor and take something that had been FDA approved and tested. That’s when he gave me Ambien, which I took for less than a week. I could tell that it was affecting my baby even though he said it didn’t get into the breastmilk. I thought, “Well, no, this isn’t okay.” I didn’t want to hurt her, so I cold-turkey-ed off it. That’s when everything went completely crazy and our lives changed forever.
Cold turkey after only a week and it went haywire?
There’s an effect called kindling. The more you go on and off a benzodiazepine or any kind of a drug like that, the more likely it is that you will have worse reactions in your withdrawal. That was me. It can happen with alcohol and other drugs too. It was actually my third time taking Ambien. There were adverse effects before, but I didn’t connect the effects with the medication, and it wasn’t disabling the first two times.
What were your symptoms?
I wasn’t sleeping again but it was worse even though I wasn’t getting any sleep before. I couldn’t keep food in. I was in severe pain. I could barely walk. I had difficulty reading or watching TV. This definitely wasn’t normal as I’d been fit before and during my pregnancy.
So we went to the doctor – I had every test imaginable done trying to figure out what was wrong with me. Of course, none of the tests came back positive for anything. I was told that I had depression and anxiety. I knew there was something physically wrong with me but when you can’t prove it, and everybody’s telling you, “You can’t just keep lying around all day like you’re doing” … It’s hard to fight back against that. Finally, I gave in.
I took the antidepressant that was prescribed and also a prescribed tranquilizer which was, in reality, a stronger version of Ambien. It was Lorazepam. All of a sudden, I got better! The doctors and I didn’t understand that taking more of the same medication stabilized my injury for a period of time.
That’s also why every attempt to taper off it was unsuccessful. I kept trying to taper, but every time I would, I just felt awful. I couldn’t do it for more than a day or two. Then I would go back up on my dose. After getting off the antidepressant, I finally decided to get off the tranquilizer no matter what. I made my first cut, and then my second the week after. It was pure torture. I was just writhing in physical and mental agony. I experienced extreme weight loss, hair loss, and the deep-in-your-bones kind of pain like chemo patients describe.
What was the mental aspect?
It’s like somebody takes a hand mixer to your brain. You can’t follow a train of thought toward its logical conclusion. It’s incredibly difficult to make any sort of logical decision like I’m going to trim my daughter’s fingernails: go to the bathroom, pick up the nail clippers, walk downstairs, sit down and then try to focus your eyes and coordination. To do something like that was just beyond me.
That doesn’t even delve into the agony, the terror that’s going on. It affects your fight-or-flight response so you’re in this constant state of terror and panic. Spiritually, it’s like the shield of light that had protected me my whole life was just gone – I was open to every evil thing coming at me and I had no protection from it.
Did you, at that time, have anything spiritual that was getting you through? Or were you just kind of living one minute to the next?
I was literally just surviving. For twenty minutes, I’m going to do this. Then for the next twenty minutes, I’m going to listen to a meditation. Then for the next twenty minutes, I’m going to go sit outside in the sunshine. In the next twenty minutes, I’m going to do some stretching. I was running a marathon of survival from minute to minute.
I would pray and pray and pray in my mind for some relief or comfort. You grow up hearing that God is peace, God is love. But when you can’t feel any of those things, you’re so disconnected from Him. You don’t feel God in the way that you’ve always known. Heavenly Father had to make Himself known to me in other ways. I had scriptures come to my mind when I was thinking about something or quotes from literature that related to my questions or concerns. Even with a lot of memory loss, I still had words come perfectly into my mind. I didn’t recognize it at the time as God communicating with me or comforting me. But that’s what it was.
What support did you receive from your family and ward?
My husband is a superhero. He’s the one who got online and figured out what was going on with me. He said, “Hey, there are all these people like you who are all saying the same thing and they’re in these support groups.“ He’s the one who helped me determine that I needed to switch medications and taper a lot slower. He was working two jobs and taking care of two little kids and an invalid wife.
During that time, I reached out to neighbors, people in my ward, and asked for help watching my daughter for a few hours each day while my son was at school so I could get some rest. I didn’t want to put her in daycare but I knew I couldn’t care for her all day every day. Neighbors took my son to school and members of my ward took turns taking care of my daughter. My Relief Society President was conscientious about providing me with ministering sisters who were compassionate and willing to step up and help me in whatever way I needed.
How did you finally get free of the dependence?
A support group taught me how to micro-taper over about a year and a half. I learned a lot of things there that I now share with others.
Jocelyn Pedersen
What type of information-sharing and advocacy work are you involved in now?
After learning from people who have researched withdrawal from benzodiazepines, I began to instruct other people on how to do that. Not just withdrawal, but how to advocate with their doctors and navigate relationships with their families. I began making videos that I wish I’d had when going through this, videos that explain things in a way that is understandable to someone dealing with a limited cognitive capacity, but that is also empathetic. They explain what is happening to family and friends who might alienate loved ones going through this because they don’t have a valid explanation for it or think they’re dealing with an addict, which isn’t the case. That’s the content I provide on my BenzoBrains YouTube channel.
Through that, I’ve been invited to participate in patient panels and as a guest speaker for continuing education courses for doctors and mental health providers on the effects of benzodiazepines and how to help people going through the withdrawal process.
I also got together with some of the leaders in the online community and we co-founded the Benzodiazepine Information Coalition. The main administrators are people who have been injured, and we also have a medical advisory board. One director is an MD (medical doctor) and another is a PA (physician assistant). One of the co-founders is a nurse. It’s geared more toward public outreach and informed consent for patients.
The Alliance for Benzodiazepine Best Practices is the nonprofit I’m serving as an advisor to now, is focused on the medical profession and the FDA, reforming physician education, prescribing practices, and publishing research.
You’ve published a memoir, Seeds of Hope: A Journey Through Medication and Madness Toward Meaning, about your experience to continue to share your information. How did you find hope in all of this?
Hope grows when you’re in a situation that is hopeless. That’s how it works. It has to be ignited in the darkness. It’s looking for those things to hold onto. It was the people who had healed and their stories that I held onto that said, “You can come back from this even though it seems impossible.” It was the kindness of neighbors, the faithfulness and consistency of my husband. It was hoping and looking forward, believing that life could get better, that I wasn’t going to be that way forever.
Following hope, I had to find my faith again because of memory loss and forgetting everything that I’d learned about the gospel. Not completely, but a lot of it – not being able to make sense of it, not experiencing God in the way I always knew. I had to question what I really believed. I had to rebuild my testimony slowly bit by bit, and that started after an experience in a testimony meeting one Sunday. I didn’t feel like I knew any of the things that other people were testifying about, but I was prompted to talk about what I did know – profound spiritual experiences I’d had in the past. I walked up with my boils on my face and crazy hair and all in front of the congregation and bore my testimony of spiritual experiences I’d had after bearing my testimony to a friend in high school, going to the temple, and my first baby being stillborn. Things I knew to be true. Even though I didn’t know everything else, I knew those things had happened and I knew they were real, and I couldn’t deny them. That act of faith is what opened the door again to me feeling that connection to God and reading the Book of Mormon. It renewed my testimony.
You wrote an essay that was recently published here on MWP, about moving straight into a challenge rather than trying to turn away. That’s an applicable comparison to our global situation right now.
Water and the ocean are metaphors I use a lot to help people understand my experience. One day I was reading a scripture in the Doctrine and Covenants that had the phrase “workways with the wind and waves” (D&C 123:16). I decided to look up nautical terminology to better understand it and as I was studying, suddenly the idea for this essay just came to me. I learned so much from writing it. I am still learning so much every day. With the knowledge I’m gaining, the scriptures are opening up to me in a way that they couldn’t have before because of the understanding I now have.
One thing I’ve learned is that adversity can serve a purpose and it’s really why we’re here. If we run away or try to avoid all these bad things and focus only on the good, which we do out of good intentions, that’s when a lot of harm happens. That’s when bad things are allowed to continue.
With everything that’s going on [with the coronavirus pandemic], it’s really becoming clear that when we turn to outside sources and trust these outside sources to help us, instead of turning to The Source that we know, we’re giving our power away. I’m not saying that we shouldn’t go to doctors or listen to experts. But I think we’ve had a lot of things ingrained in us. The world has taught us that you don’t have the power to do anything, you’re helpless, you need us, you’re a victim. As members of The Church of Jesus Christ of Latter-day Saints, we know that God can heal us and take care of all things, if we have faith.
As members of God’s Church, we shouldn’t be fearful. We should know that we are protected and we are taken care of. Even if life goes differently than we planned, even if things may be scary and may not make sense, we know that God has us in His hands. We can trust in that. We can avoid a lot of the world’s pitfalls if we trust in His promises.
When I was teaching a Sunday School lesson on the Isaiah verses in Second Nephi, I said, ”Isaiah’s so easy to understand. I’m going to explain it to you in just three words: there are going to be pitfalls, but I made you some promises and I’m going to keep them, so be patient (faithful). Pitfalls, promises, and patience. There you have it. That’s all of the Isaiah verses right there in a nutshell.”
At A Glance
Age: 42
Location: American Fork, Utah
Marital History: Married
Children: 3
Occupation: Mom
Covert to the Church?: Technically, no.
Schools Attended: BYU Provo
Languages Spoken at Home: English
Favorite Hymn: Be Still My Soul as sung by the Millennial Choirs and Orchestras
Website: youtube.com/c/benzobrains
Interview Produced By: Trina Caudle