On the Mad in America podcast this week, we hear from Renee Schuls-Jacobson. Renee was a teacher for two decades and she is now an author, artist, advocate and coach. In this interview, we discuss her book Psychiatrized: Waking up After a Decade of Bad Medicine which was released this year.

The book is a beautifully written account of Renee’s experiences being prescribed the benzodiazepine clonazepam (Klonopin) for seven years. It talks of her experiences taking the drug as prescribed but perhaps more importantly, also tells of what happened to Renee as she made attempts to withdraw.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Renee, welcome. Thank you so much for joining me today for the Mad in America Podcast. We are here to talk about you and your book, Psychiatrized: Waking Up After A Decade of Bad Medicine, published this year. The book describes vividly your experiences of ill-advised psychiatric drugging and polypharmacy and so much more. Before we hear from you, I have to say in reading it I was particularly struck by how beautifully you write about such awful experiences.
So, to get us going, I think it was in 2004 that you were initially prescribed a succession of antidepressants for what was called anxiety-related insomnia and this was followed by a benzodiazepine. Could you talk to us a little bit about what led to that initial prescription?

Renee Schuls-Jacobson: Yes. First, I’d just like to say thank you for having me. I really do appreciate this opportunity to share my story.

So when you’re asking me about what led to the initial prescription, I feel like that’s always kind of complicated. If you wanted me to be reductive, I could say insomnia but I am going to be a little bit more full with my explanation.

Honestly, I feel like we all experience trauma in our lives. It’s a cumulative effect and you just don’t know how much you can tolerate until it bubbles over. So, I would just say that in my life, in my young life, I understand now that I actually had some pretty unusual experiences. I lived through a pretty serious burglary when I was very young that left me very scared about staying alone in my house, never dealt with. I also had some experience growing up in a family where my mother was very dysregulated emotionally. She would rage and she would belittle me and she was doing the best that she could, but it wasn’t very great at certain times.  She would hit me and call me names and that takes a toll. We’re not talking that was one time. That was my entire zero through 18 years.

I would also then add that I was brought up in a religious community where I was brought up Jewish and leaning more toward a very traditional conservative upbringing. The expectations for girls were very clear and it was very clear how I was supposed to behave but it was not really who I was in my core self and that did some damage. Then I went to public school and when I ask people at talks, ‘raise your hand if you’ve ever had to deal with some sexual misconduct or harassment’, and every hand goes up.

I was manhandled by teachers, boys in the school and people made it sound like ‘you’re being too sensitive, this is just the way it is to be a girl in the United States.’ So, there were a lot of things where when I would try to question them, I was taught there was something wrong with me. I was too sensitive, this is just the way that it is, don’t question it. Then I would just add that when I was 17, I actually was raped by someone that I knew and trusted and quite honestly, someone that I loved very much. There was no term for date rape back then. I was taught that rape was you alone in a forest with a stranger, with a weapon. That’s what rape was and it wasn’t that, but it was not consensual. It was the second time that I went to my parents and said this happened and I was met with those very stereotypical responses of, “What were you wearing? What were you doing? Why were you out? You must have done something. Did you even try to get away?” All those things. So, very blaming.

When you ask what brought me to the medication the first time, those are all the things that were in the background. The precipitating event, however, was in 1999, while I was pregnant with my only child, my son Cal. It was a very difficult pregnancy from the start. I was on bed rest several times because of different issues during the pregnancy and I just wanted this baby. It’s so scary, there is this person inside of you and you’re the ecosystem for that person and I just wanted him to get here and it’s so scary to have numerous occasions where you’re bleeding or there is partial abruption. So, I was already quite nervous about this.

When he was born in 1999, it was a really bad delivery which resulted in my losing almost 75% of my blood. I was rushed into an emergency surgery, where they were actually planning to do a hysterectomy. I went to emergency surgery and my newborn son was taken to an ICU because he had stopped breathing. It was really scary. While I was in the surgery, which by the way did not end up being a hysterectomy, I had an out of body near-death experience, and it was terrifying.

Now, people have said to me that this experience was probably because of the anesthesia, people gave me all kinds of scientific reasons but this is not the way I experienced this. I just had this complete experience of me hovering over my body. I watched myself below. I saw a pink basin filled with blood. I saw the top of my doctor’s bonnet, I could see the top of her head and I started floating across the room, which felt like into a tunnel and I could just see the bottom part of my body disappearing through this tunnel. It was really scary and I remember trying to hold on to the edge of this tunnel, not wanting to go in and just realizing this is it, this is me, I’m not going to be a mother, it’s all over. The next thing I knew, I was in my body and just looking up. My first words were “Am I dead?” I was strapped to a bed and I was receiving some kind of fluids and a nurse popped out and she just said, “You’re not dead at all. You’re fine.”  Her first words to me were, “You’re fine,” and I wasn’t fine. I wasn’t fine at all. That started the whole problem, people telling me that I’m fine and that I should be fine, and I wasn’t fine.

Moore: You relate vividly in the book the trauma that you experienced during that difficult birth. I’ve heard people say that even a completely normal run-of-the-mill birth can be quite traumatic, but unacknowledged trauma because the people dealing with you have seen it hundreds of times, but you haven’t as a new mother or a new father. I’m not surprised that you came to a point in your life, having experienced all that you did, where you absolutely could not sleep at all.   

Schuls-Jacobson: Yes, it was really difficult to sleep after that. I wanted to talk to my husband about these things. I’ve always been someone, I’m sure you can tell, I process my thoughts through talking to someone else and that’s just how I’ve always been. I was a teacher. I love the exchange of ideas and my husband was just not interested in this dialog.  He is a doctor and he was like, “Why are you focusing on this? The baby is fine, you are fine, can’t you just move on?” I got a lot of that. I got a lot of that from his family and I got a lot of that from other people who were just telling me all this is normal, new mothers can’t sleep, new mothers are tired. This is to be expected, but I really started to hear voices.

I was having what people call auditory hallucinations. Honestly, I hear things all the time now. Now, I just know to listen to them better but I was having these experiences where I’d say, “did you hear that?” and it was very scary. It would happen at night and I was perseverating, I was making mental lists at night, I just couldn’t relax. I knew the baby was going to wake up and need to be fed. My partner was not wanting to talk to me. So, I just felt really alone with it.

When I think about it now, it makes me pretty emotional that I was isolated for many months, all by myself. No visitors, holed up in bed. I had this personal care aid but she wasn’t interacting with me and it really was kind of like solitary confinement. That’s not okay.  People need to be with other people.  So, it’s only now that I have that perspective.

So, I ended up having some pretty terrible insomnia and my husband who is a doctor, one night, I woke him up one time too many and he said, “This is just crazy. You need to get some help. Something is going on here and you’ve got to get some help because there is no sound, there is no whispering, and this can’t keep going on.” So, I went to see my primary care physician.

Moore: Initially, it was a few different antidepressants in short succession, wasn’t it, but then you came to be prescribed what was referred to as a “baby dose” of a benzodiazepine.  How did that feel? Because I think you described that you weren’t someone that was given really to relying on medications. So, were you worried about that?

Schuls-Jacobson: I believe the first thing they gave me was Prozac and I immediately started twitching. It was a very manic response, I was agitated and the first thing that the doctor said was it takes a little bit of time for this to build up in your system. I tried so hard, two weeks of this jitter and I was sleeping less. So, I went to see him and he said, “So, it’s really about finding the right drug for you. So, let’s take you off of that one and I’ll try another one.” There was a series of three attempts with antidepressants and at that point, I was a mess. We’re talking probably about three months on and off of different drugs and now I’m sleeping even less than I had previously. That’s when the doctor said “You’ve failed three attempts with SSRIs.” I had failed. So he said, “That means you’re going to be a candidate, I’m going to give you this other medication that’s going to break the cycle.”

Truth be told, I wanted that cycle broken. The first prescription was five pills just to break the cycle and it worked. I went to sleep and I wasn’t agitated. I got the first quality sleep I’d had in a long time, in years at that point and I thought ‘whatever that is, it’s a miracle’. I called it a miracle. I called him and I said, can you continue to write me for that medication. He said, “I can’t but I will refer you to someone who can.” That’s how this cycle started because I trusted my primary care physician.

As I recall, no one said anything to me about this causing dependency or leading to withdrawal. In fact, the psychiatrist who eventually prescribed for me longer term, actually said to me, “benzodiazepines are great for weight loss.” I’d had a baby and he said, “It’s great, you might even lose some weight.” Who doesn’t want to maybe lose a little weight in our culture? So that is what brought me to clonazepam (Klonopin) at the beginning, was stopping the cycle of those SSRIs.

Moore: It’s incredibly powerful, isn’t it, to sleep after the period of time that you hadn’t slept and to take a drug that, for the first time, allows you to sleep. There is physical dependence on these drugs, but there’s psychological dependence too. When you’ve found something that helps you temporarily, you start to become attached to it, don’t you?

Schuls-Jacobson: Yes. I guess what I would say now is, if someone had said, “Here is a bottle of Jack Daniel’s, just drink that until you black out”, I would have looked at them and said, what are you talking about. I would never have done such a thing, but this little ‘baby dose’ that was so low, what do you think I was doing?  I took a pill to black out. It’s the same neurotransmitters, it’s the same process. It just is a little cleaner and I went to a very nice doctor’s office and got a lovely bit of help. So, this was a stunner for me, a stunner.

I didn’t recognize it as a dependence. I thought that this is what you do, you go to the doctor.  I was married to a doctor and I trusted doctors. There was no reason to question that this person was doing something that was helping me.

Moore: You write in the book that you wanted to stop the clonazepam after about nine months. So, was there anything in particular that made you want to stop and what kind of support did you get, if any at all, in coming off?

Schuls-Jacobson: I wanted to come off of it after the nine months point because I started to have some very weird dizziness that was so bad that sometimes I’d actually have to hold on to things. It would be like an episode. I started to have a lot of infections. I got yeast infections and bladder infections and I had just all kinds of strange things that I never had before and I attributed it to the drug. I wasn’t doing anything else. I was exercising, I ate right. The only thing I could point to was the medication that I was taking and I thought, ‘I wonder if this is connected to the medication?’

So when I went to go to ask and inquire of the psychiatrist who was now prescribing, he said, “Absolutely not. You’re taking a baby dose. There is no way that it could be the medication, but what it probably means, my dear Renee, is that this is a breakthrough of your original problem. This is evidence that you need this medication. You are very sick and the insomnia is coming back in.” So, he said, “This just means we need to raise your dose.” So, slowly, over time, that 0.5mg went to 0.75. From 0.75, it went up to 1, from 1 to 1.25 and ultimately, I ended up taking about 2.25 mg of Klonopin, always as prescribed, never more than the doctor prescribed but that’s a huge uptick. I believe it’s a 400% increase over a seven-year period and so my ‘baby dose’ really increased, but I would also say that was normalized by almost everyone because, again, my now ex-husband is a doctor and he would tell me he saw people taking 10 mg of Klonopin. So, that was nothing if I was taking 2 mg. That’s part one.

Part two, I was definitely part of a medical community as the wife of a doctor. The story is everyone is taking something and this was very true that many of the wives that I know were taking antidepressants. There was a lot of normalization around that and I guess the other thing is that I really did trust my doctors and every time I went to go see any doctor for just a regular checkup, no one, not one doctor ever said to me, when they asked you at every appointment, what medications are you taking. No one ever said, “Hold on a minute. You’ve been taking this medication and this is not a good idea.” No one ever, not one bell, whistle or a red flag, not once in seven years.

Moore: It’s so difficult to be that voice of dissent, isn’t it?  It’s so difficult when the peer pressure around you, your own family, your doctors, friends and extended acquaintances are normalizing that it’s okay to be on the drugs long-term, it’s okay to take this dose. It’s okay to take multiple drugs at a time.  It’s so difficult, isn’t it, to dissent to that and say no, this isn’t right for me, particularly when you’re vulnerable anyway.

Schuls-Jacobson: Yes, and I really have to say that while I was on the medication, I believed that I needed it. I had already been gaslit into believing there was something wrong with me and that everyone in the whole family unit believed there was something wrong with me. I really was a bit of a scapegoat in this family unit where there is something wrong and I was getting better. As long as I was taking the medication, everyone felt good that I was getting better. So I believed that as well, and so I wasn’t the voice of dissent, I was fully bought into that narrative, fully entrenched.

Moore:  You explained that you were getting dizzy spells and infections, and you started to wonder if it was the benzodiazepine that might be causing it.  How did you approach getting off it?

Schuls-Jacobson: I didn’t approach getting off it. My story took a little turn one day in 2011.  The doctor who had been prescribing was prescribing me three months at a time, and he would just basically send these prescriptions through the mail.

One day, I went in for one of my appointments and I was greeted by a note taped to the door, and the note said, ‘Hello patients of Doctor So and So, your doctor is no longer practicing. Please get in touch with your primary care physician to find a new provider.’ The only thing that I really knew about this medication was that you really aren’t supposed to miss a dose. So I called my primary care doctor, the first person who prescribed ever, and he said, “You better come in here right now, because I know you can’t miss a dose.” So, he got me right in and I sat down with him. I was very casual. I said, “so I guess the doctor stopped prescribing. I am going to need somebody else. Can you just write it for me?” He looked at me and said, “No. I cannot write for you for this,” and I said, really, why?  He said, “Because you’ve been taking this a long time and you have a dependency problem.” I went, “What.” He said, “You’re going to need an addiction specialist.” I said, What? He said, “Because these medications just can’t be abruptly stopped. You’re going to need somebody to help you get off of it.”

I was stunned. No one had ever said anything, including him. So, he did refer me, and thank goodness, he did refer me to the doctor who took me the rest of the way, Dr. Patricia Halligan,” who I will mention, she is a big part of the Benzo Information Coalition. So, I met her and the very first time I met her, I said, “I’ve been taking this medication. I just want to keep taking it. If you can keep prescribing it the way that my guy had, it would be really cool.” She looked at me and said, “Right. So, let’s explain why you’re here.” So, she explained to me for the first time that I had been taking a medication that is among one of the most addictive medications and that my body has become dependent on it and that if I wanted to continue to work with her, we would need to work to taper off that medication.

I said, “Great, let’s do it.” I didn’t have a young child anymore at this point. I didn’t have that stress, he was sleeping through the night and she never scared me into thinking there could be a problem. I really didn’t understand what was involved with the tapering process, but I was good. I didn’t want to be on the medication anymore.

Moore: I’m so pleased to hear that you did find somebody knowledgeable because there are so many not knowledgeable practitioners out there that would yank somebody off of benzodiazepine really quickly and then, of course, you go back and say, I’m in hell again, and they say it’s relapse. They don’t mention dependence because they just want to reflect it back on the person being treated.

Schuls-Jacobson: Yes and when you talk about that hell, for real, it’s unfathomable and no one can see it. So, you’re shaking and you’re crying and no one can really see these things, but yes, she really understood and I was so fortunate to have found her. I’m so glad that she’s helping so many other people now and helping psychiatrists to de-prescribe safely for their patients.

Moore: So, Renee, what happened then as you go to the end of your clonazepam taper?

Schuls-Jacobson: People do ask me this question a lot; did I have trouble during the actual taper? Quite honestly, Dr. Halligan was so terrific, she really let me lead. The idea was that I would always be going down and never back up, but if I got a little bit twitchy or uncomfortable, I just held it. I held it a little bit longer. So, it was very patient-driven. I didn’t even know what that was, but that is what she allowed me to do, and it was fine. So, I didn’t have a ton of trouble during my taper.

At the completion of the taper, there was a little bit of confusion. I won’t go into all the confusion there but she had meant to have me continue to taper down using a water titration strategy but that was not written out. She had gone out of the country for a month and I just thought I was done. I had crossed over from the Klonopin to valium. I had gone down as low as I could, and at the very bottom of the little yellow pad of paper indicating what my dose would be, and I went, I’m done! So, I stopped.

For those of us who have been taking these medications, what we learn is that they have a very long half-life and they stay in your body for a long time. So, I thought I was done but it was an absolutely false sense of security. I remember the night that I finished, I bought a new dress, we went out to dinner to celebrate that I was done. About 10 days later, I really started to feel strange. There is almost no word, you know what a kaleidoscope looks like? I remember feeling like the world tilted and it had these edges around it.

Now, my ex-husband is an ophthalmologist and he was saying, “You are having an ocular migraine. That’s what this is.” I was having a lot of visual stuff. So, I didn’t really connect it.  It’s so strange but I didn’t connect this 10-day after thing. I thought I was just getting sick and again, I had that dizziness, the insomnia was back. The ringing in my ears. My eyes were dripping and I started to have this inner malaise, like with a motor running and it was very uncomfortable. This is just at the 10 days off point.

Shortly thereafter, probably the next day, I hadn’t slept and I could hear my husband banging around in the kitchen. I went downstairs and I was holding on to the walls. I just said, “something is not right. Everything is too bright, everything is too loud. I’m having a problem”. In my brain, I heard the sound that you would hear when air conditioning clicks on and off. It clicked three times and I went down on the ground. I now understand that was a seizure that I was having. I fell on the ground and my then-husband, now ex, went off to work and I stayed there for most of the day. I was finally able to crawl over to the couch, where I huddled under a blanket and that day prior was my last normal day, because for years after that I was bedridden and severely disabled as a result of that abrupt cessation of the Klonopin.

Moore: If you read about it, you find that benzodiazepines suppress seizures. That’s one of their indications when they first started to be used but of course, your doctor doesn’t tell you when you come to stop this drug, you might be more at risk of seizures because the drug has suppressed seizure activity, even if you’re not someone prone to them. How many of us would actually take these things if we were told that at the start, but it never enters the conversation, does it?

Schuls-Jacobson: I remember even asking about side effects the first time. Not with my primary care doctor but when the psychiatrist prescribed, I remember saying, “Are there any side effects?” He said, “No. It’s tried and true. This is a very old drug, very good,” and he said I might even lose a little bit of weight. So, he really put a positive spin on it. There was not one mention of a negative side effect, which now just blows my mind. When you read the hundreds and hundreds of symptoms that a person can have that read like a terrible laundry list, I joke around that I had every single solitary one, except erectile dysfunction. Every single one, and it’s not like you have one and then the others go away. They are simultaneous and non-stop, 24/7. You are holding an electric wire, being electrocuted while someone is burning your hand on the stove, while you stub your toe, while someone is hitting you with a hammer over your head and someone is poking you with a cattle prod. It’s unbelievable. I can’t believe I survived it, but I have.

Moore: I think perhaps the cruelest thing is to expect people to deal with this maelstrom of physical problems when the first thing that happens when you reduce many of these kinds of drugs is your anxiety comes back a hundred times worse than it ever was because you reconnect with your emotions and you’re not used to experiencing them. So, this poor person is not only physically going through hell, their anxiety about what they are going through is at a far higher level than they perhaps have ever experienced. 

Schuls-Jacobson: Yes, and it’s my understanding that it actually is like a chemically-caused brain injury. When you read literature about what people with brain injuries have, they have that light sensitivity, sound sensitivity, the rocking, the insomnia. So, even though it doesn’t seem to be able to be picked up necessarily, you can’t detect it somehow, there is a real injury there. Then we are so disconnected from our bodies, there is this pendulum swing of for years of not feeling it, and then it swoops the other way and makes almost an overcorrection. So, it takes a little bit of time to get back to some kind of homeostasis, where you can say, I feel my body, normal feelings again, not these crazy feelings.

I also had way more than just the physical sensations. There were psychological issues, it was terrifying. I had paranoia, I was agoraphobic, I thought people were trying to kill me. I had these auditory and visual hallucinations that came back. I heard trains coming and going, doors slamming when they weren’t slamming. I remember trying to fall asleep during that really difficult time when you just cannot get any rest, and it just was one door slamming after the other. There were no doors slamming. Something is really injured when you’re healing from this.

Moore: You describe again really well in the book that the kind of hell you went through over many years and that really had quite a serious impact on your family life, didn’t it? Could you tell us about that?

Schuls-Jacobson: It did. I just could not live in my home anymore. My now ex-husband, then-husband, really didn’t change anything in his life to try and help me with this. He really wasn’t even curious about it. So, he just went back to work and left me alone for long periods of time and I could not take care of myself. So, I was not really able to take care of our home or our child. So, what ended up happening was that I ended up reaching out to my parents, they live about an hour and a half away, and my father came to get me. He actually came into the house and he came and got me, I was upstairs in the bedroom and he carried me downstairs and brought me to their home. So, I lost contact with my son for an extended period of time. He was going into the ninth grade at the time, but I just needed more help and I wasn’t getting it where I was.

Moore: It must have been so difficult to be in the middle of all this and be having family rifts and splitting apart with your loved ones when you needed the most support possible, but I hear so many people saying that families can’t take what’s happening to their loved one. There’s all sorts going on, there is guilt and denial, in some cases, there might even be gaslighting or disbelief, or ‘pull yourself together’. It seems to be at the worst possible time.

Schuls-Jacobson: I think that there are big blind spots sometimes. I know that I was always the person that people would come to with a problem. I was always the strong one, I was a teacher, I was a mother and I’ve always been able to handle a lot of balls in the air at the same time. Now that I am back, I am able to do that and multitask a bit. I think it was a bit of a shift because people always saw me as the strong, capable one. So, it’s going to be fine.  Maybe I was being dramatic or something, but there was an inability for people to recognize how bad off I was.

Moore: In the book, I felt there was a bit of a theme. Obviously, the book will mean different things to different people, according to what bits they relate to, but to me, the more you got involved with the medical system and got on the medical conveyer belt, the more intense your difficulties became. But then there came a point where you kind of started to rely on the kindness of strangers almost who were not medical people. That seemed to be a paradigm shift in your ability to trust yourself to deal with these things and to heal.
So, correct me if I’m wrong, Renee, I think it was a friend of yours that recommended a local wellness center. Could you tell us about that? That’s quite incredible.

Schuls-Jacobson: Shout out to Regina Wright. Across the street from my parents lived my childhood friend. It’s so hard to explain this but it took all my courage to walk across the street because everything was so bright and I was a mess. I knocked on her door and I said, “Girl, I am a mess, can I come in?” I told her what was going on, that I had come off of this medication and she didn’t flinch. She sat with me and she said, “There is a really good wellness center nearby and maybe you could go there and get a massage or they do acupuncture.” I think she even knew some people who had gone there who really benefited from it, and it really was the shift because everyone else was saying to me, “Please go back on this medication. Please go back on the medication.”

I had just gotten off of it after this long, extended 10-month wean and I just had some kind of internal guide or understanding that if I went to an emergency room, they were going to reinstate me or possibly, I would’ve been put into a psych ward, where I might have been poly-drugged again and I just could not have that happen. So, there was something guiding me that got me across the street that got me to Gina and that got me to this wellness center, where everything miraculously changed.

Moore: It did seem to be the point that you started to trust your own truth and trust your intuition, and find resources within yourself that you perhaps couldn’t access when you were being doctored or medicalized if you like.

Schuls-Jacobson: Yes. It definitely involved asking for help. I felt like I had always been asking for help, but obviously, to the wrong people. So I went to this place but the massage was awful, not because the massage therapist was awful, it’s just that I was too sensitive and I couldn’t take the feel of her hands on my skin. The lavender that she put on felt like it was burning me. So, I left early because I couldn’t take it and I went to lean against the wall, waiting for my father to pick me up because I couldn’t drive at that time and I was just sobbing and sobbing against this brick wall. I basically just thought to myself ‘this is it, I can’t do this anymore. I’ve been doing this for a long time now.’ It had been over a month or two months, I guess, that I had been in the acute phase and I just said I just can’t do this anymore, this is it. I have no function. I can’t be a mother, I can’t take care of a home, I can’t read, I can’t write, I can’t drive. I can’t get a massage. What am I doing here?

I looked up at the top of the building and I thought ‘I’m going to jump’. I’m going to jump off the building, and I was sobbing and sobbing because I didn’t really want to die. I just wanted the pain to stop and this woman approached me and she was in silhouette because the sun was behind her. In my memory of her, she looked like a princess and it looked like there were feathers coming out of her hair and she was wearing this white dress to the point where people have actually said ‘was she real, or was that like the sixth sense, was that a figment of your imagination?’ No, she was real. This is a real person who approached me, she bent down and said, “Are you okay?” and I said, “no, I’m not okay.”

I told her what was going on briefly and she looked at me and said, “Would you like to come home with me?” I did not ask her name and I did not ask where she lived. I was going to jump off of a building. It’s like, if you’re about to end it, okay, if this person is going to take me home and chop me to pieces, make it quick. So, she put me in her car and I went home with her. While we were in the car, she was telling me about what she does and where she lives, and about her family. She said, “If you’re coming home with me, I should probably know your name.” I said, my name is Renee and she said, “That’s perfect. My name is Renee too.” It was truly a very powerful moment because in my whole life, I probably only knew one other Renee, maybe, and so this was really weird.

Renee means ‘reborn’ in French and it just was this very strange thing for both of us, and I went home with her. It was the beginning of a total paradigm shift because she knew things.  As it turned out, she had been through something similar and she had healed herself from three illnesses and had been through something similar. She taught me a lot.

Moore: It was pretty incredible to read in the book that you clearly got to a point where you thought ‘there are no more options for help, I am completely out of it’ and perhaps the last thing you expected was to find it from the kindness of strangers. Ultimately, you spent quite a bit of time with this family, didn’t you?

Schuls-Jacobson: Yes, and I would just say, coming from a house where all the books on our shelves were medical, the DSM and all these things, I walked into her house and she had Robert Whitaker, Anatomy of an Epidemic and The Body Keeps the Score, all these other books that I had never seen or heard of. It was a whole alternative paradigm or parallel universe. The matrix is real. I came into a different world and I just learned about juicing and about eating differently and she helped me to get off one other medication. I was taking Topamax because they had decided I had migraine headaches. So she helped to get me off the Topamax while I lived with her and she never asked for a penny. It was truly the kindness of strangers, but way beyond the kindness of strangers.

Moore: You talk about, as you emerge from your psychiatrized self and medicalized experiences, you started to discover your creative spark again. You started to think about doing things that you hadn’t thought about doing for a long time. You described a change in relationship with both your son and your husband who of course you’re still in touch with, but obviously, you’re moving to a different place. What was in your mind in those times?  Because I imagine the future, after spending some time with Renee, looked quite different than it did the day you met her when you were sobbing against the wall, thinking this was probably the end of it.

Schuls-Jacobson: So, fast-forwarding, after I spent a fair amount of time with Renee, I actually returned home to my husband and my son. It really was strange. It’s still strange when I think about it. The love was just not present and I did not know what to do with that.  We ended up going to marriage counseling for a time and then I ended up going to rehab. I ended up actually going to a rehab in Arizona where I learned a lot about trauma-informed therapy, which I never had before, and it just was the framework for which everything snapped in. My then-husband came to Arizona and participated in the family week experience very reluctantly. We learned a lot about each other, but mostly, we came out of it realizing we were wanting very different things for our lives that we were very different and had very different needs.

So, when I returned, shortly thereafter, I had improved enough, so I was able to drive confidently and I was driving around one day and I saw this low-rise building. I’d driven down this road a million times, and there was this low-rise building that had a vacancy sign. I looked at it and I just stopped. There was a voice that said to me, “Go take a look.” So I stopped the car, I looked and I thought, ‘I need to do this.’

It was so strange because my ex and I have talked about this many times. We are both Jewish people, we believe that marriage is forever and it never occurred to us ever that our marriage was ending. I just thought I was going to be living there for a time that I would go there to heal. I always thought we would work our way back together and it was a slow realization that that’s not really what the universe had in store for us. As you said, we are still friendly but we are very different people.

So yes, I ended up renting this apartment. It was for senior citizens, I was the youngest by about 35 years and I lived there for two and a half years. I was way younger than most people there, but it was such a good place to heal. It was quiet, the people were lovely. They took me under their wing and I felt a lot of love from the community. It was very strange, but that was where I did a lot of recuperating.

In 2016, I was well enough to take a very part-time job at a community college, working as a tutor in a lab for students with learning disabilities. I was really nervous about it because I felt very disabled myself, but it was really helpful to put myself out there, even though it was so difficult. I definitely felt a sense of competency. It was confusing, how could I be so disabled, yet so be able to help other people? That’s when I really realized, this is invisible and other people are not experiencing me the way I am experiencing myself.

Moore: Then shortly after that, you describe letting your artistic side come out and becoming interested enough in that to think about running a business. 

Schuls-Jacobson: While I was in rehab, there was an exercise that we did. We had to paint something and I went into the art room and made this thing and we were supposed to present them in group. I pulled up this thing and it was very elaborate. Everyone in my group kind of went, “Wow, that’s really pretty,” and then afterwards, one of the people from my group asked me to sell it to him. I said, “Dude, you can’t buy my recovery circle, that’s my recovery.” So, he said, “I would buy it, it’s really pretty.”

So, long story short, was it was the first time that I saw myself as having this other thing that someone reflected back at me, and yes, when I left the rehab, I came home and I started painting. I made something for that person and I started making other things for other people, posting them on Facebook, just always letting people know what I was going through.  That was always my way of letting people know. I never bought into this stigma thing, I was not ashamed, I didn’t feel like I did anything wrong.  So, I was like, you know I’m healing from this brain injury, here is what I painted today.

So, slowly, organically over time, I developed somehow this business and it wasn’t meant to be a business, it was a coping mechanism. I started painting and people liked it and people bought them, and that’s where I am today. Now I am an artist and I do shows, I am one of those girls that sit in white tents. I have a website and I teach art classes, but I also am back to teaching memoir writing classes as well. So, I am teaching again.  I’m just doing it in a different way that suits both halves of me.

Moore: In the book, you say, “At 42 months off clonazepam, I can tell that I’m finally healing.” I know from other interviews that it’s quite difficult for people who have never been through it to accept that these experiences can go on this long. They tend to have this view that you come off the drugs, you have six months of turbulence and maybe everything is fine, but these really long-term journeys off the drugs are far more common than people realize, aren’t they?

Schuls-Jacobson: Yes, and that’s why I frame it as a brain injury because if someone had a stroke, you don’t expect them to be okay a day later or a week later even. I try to frame it that way, it’s a very weird injury, in that it affects some part of the brain where you’re still able to talk and it’s just weird, but there is this understanding that you are not okay. It’s like a splitting, it’s very odd. Whatever it is, yes, it does last a long time but I am truly a firm believer, and this is why I really wrote the book, James, is that I really wanted people to understand, I don’t want to be the poster child for benzodiazepine healing, but I have mostly healed from this. I healed far enough through this that from the outside, no one can tell, on the inside I have a little bit of stuff left, but I can co-exist with it. Neuroplasticity is amazing, your brain can heal. You will not be where you are in three years where you were at three weeks. At nine years, you will not be where you were at six years. It does continue to change and in my experience, improve.

I’ve talked to a lot of people at this point who also have experienced that you can heal.  Everyone’s story is different. I can’t tell you the timeline. I can’t tell you it would be the same timeline as mine, it probably won’t be, but you will not be the way you are at the way you were at the beginning, it will change. You just have to hold on and wait for the miracle and try to find something to do that makes you feel productive, constructive, useful while you’re in it.  That’s really what the art was for me, was just something to move the time. Some people bake and some people make rugs, some people garden and some people pick up trash.

Moore: Some people do podcasts.

Schuls-Jacobson: Some people do podcasts. Everyone’s thing that we find is different but it’s whatever it is to bring purpose and awareness, hopefully, to this issue is what I think.

Moore: Renee, that brings us really nicely to looking back on your experiences. Is there advice that you’d give others who might have had traumatic experiences in their lives and end up in front of a doctor? How could they avoid the prescribing cascade and poor treatment that you were subjected to?

Schuls-Jacobson: Yes, thank you for this question. I could have filled an hour on this one, but I guess I would say this, I really understand the desire to go down that chute, the psychiatric chute because that’s very traditional in this culture, but there really are other healing modalities that exist. The most important thing, I think, is to really look at what is going on in your life that is making you want to go toward psychiatry or these pills in the first place. Is it a job that you don’t like? Is there a relationship that’s causing you stress? What’s actually happening here, because that needs to be looked at. That’s the first, most important thing, is what’s driving you toward insomnia or whatever it is.

There seem to be two routes by the way. I’ve seen people come to benzos due to physical injury, where they’ve hurt their back or something and then someone prescribes a benzo for sleep because the pain is keeping them up. So, that’s through a physical injury. I would encourage people there to be looking for some other kind of relaxation solutions. Then there are the people who come at this the other way, which is the emotional distress, but either way, it’s distress. So, what I have found are things like getting a really good therapeutic massage. I have found that cranial sacral massage is a really great thing.

There is something for emotional trauma called SRI, and this is what Renee really taught me.  It’s Somato-Respiratory Integration. I’m not going to pretend to know everything about it, but what I can tell you is it has to do with breathwork. It is a very specific patterned series of breathwork exercises that work to bring you back into your trauma so that you’re agitated in the way that you were there. What happens in trauma, as I understand it, is we have that fight, flight, freeze or fawn response. It brings you back into that and it allows you to not do whatever maladaptive mechanism you used, you did not freeze, not do that, not get stuck. It allows you to process it at the moment as the emotion is coming up, so you can release it.

So when I did this work with Renee (some people call it somatic experiencing) when I processed that rape in this way, it was gone. I never felt activated or agitated about it again, it just released it. Peter Levine writes about this, how animals have this shake-off response that humans don’t have. Anyway, it somehow is just a release of energy and I did it with that one trauma and we went all the way back and did it for multiple traumas that I mentioned earlier that I had experienced. It is costly, but it is the way out as opposed to losing years of income and losing my quality of life and losing my family system. I wish that I had known about this way before.

Also, I really am a huge fan of Dialectical Behavioral Therapy. DBT should be taught in schools.  That would be the kind of first step, is dialectical behavioral therapy. There are some other things which are people need to look at what they are eating. These are simple things.  What they are eating, their diet. If you’re eating a lot of junk going in, you’re not going to sleep well at night. So, diet is important to look at. Exercise too. So many of us are sitting at our desks and we’ve got to get outside. We’ve got to get some sunshine, get some exercise, and this has to become part of a lifestyle. It’s a lifestyle change.

So, usually what I say is if you’re experiencing insomnia, you have to be willing to consider a lifestyle change, and if you don’t want to do it now, trust me, you’re going to have to do it later if you get involved with these medications. So, do it now or do it later. I strongly recommend, deal with the core issue rather than heaping a secondary problem on top of that first issue.

Moore: Thank you, Renee. That’s really helpful. For any doctors or psychiatrists that might be listening to this, what should we be doing differently when prescribing dependence-forming drugs like benzodiazepines?

Schuls-Jacobson: I actually have a two-pronged thought to this. There are people who are on these drugs now that cannot be abruptly stopped. I know that a lot of doctors are doing this right now. Somehow, this message is starting to seep out that these medications are causing problems. So, doctors are saying, I don’t want to prescribe this for you anymore. That is not the answer either.

So, the first thing is, if someone is taking these medications, would be to find the Ashton Manual online, it’s a free manual. You can find it at benzoinfo.org, the Benzodiazepine Information Coalition. I just hope that psychiatrists will be open to the fact that patients have access to this information and that there really is a way to slowly taper people off of these medications, which is always going to be better than abruptly stopping someone. So, that’s the first bit of advice, you can’t just stop people the way people are telling us to stop, which is cut it in half, cut it in half again in another two weeks, and then you should be fine. That is madness.

Please, go to the Ashton Manual and inform yourself, and have enough humility to think that maybe you don’t know everything. Maybe you learned a lot of stuff during your residencies, but this is new information. New information comes out. There was a time when we thought the world was flat, we know better now. There was a time we thought these drugs were the way. We know better now. So, just have a little humility.

I guess the second thing though is, if a patient comes your way and they haven’t yet started these meds, please exercise greater caution with your prescription pads. I truly am one of these people who believes that benzos should not be prescribed outside of a surgical setting.  They have a function. If you’re going to have a surgery, you need something so that you don’t feel the pain. There is a function to them that they really should not be prescribed long-term.

So I guess my advice to a psychiatrist who is thinking about prescribing benzos, please, that’s not the way. I am very black and white about it as someone who was injured. I know that sometimes people need something so they can pick themselves back up. They might need something, but please, just not a benzo. It’s a slippery slope and per the new guidelines from the FDA in 2020, there has been an acknowledgement that these drugs can cause seizures and that they can cause dependency in as little as two weeks. You are doing someone harm if you write for longer than a day or two or a week or two. So, why would you want to introduce someone to that? I called it in my book a deal with the devil. I guess my summative sentence is just don’t be the one to start somebody.

Moore: Thank you, Renee. As we come towards the end of this interview, I just wondered whether there was anything else that struck you that we should share with the listeners?

Schuls-Jacobson: I actually feel hopeful now coming out of this that we are in a paradigm shift. So people who are in it, just know that you are in it for a reason and you can come out of it. Just have faith, hold on. Read information about what it is to have a brain injury and be patient with yourselves. Be so gentle and patient with yourselves. Talk to yourselves the way you talk to a child who is injured or sick. We have to be patient and say, rest, drink, sleep, take care of yourself, and you’ll be okay eventually. Just please, be patient with yourselves because too many people are taking their lives as a result of this injury and it is patience.  That is the message over and over again. Love yourself, be patient with yourselves. You will eventually get better than you are today. I believe it.

Moore: Fantastic, thank you, Renee. Compassion has to go both ways, doesn’t it, for the person helping us but also us, for ourselves, trying to heal from something pretty significant. 

Schuls-Jacobson: Yes, and having talked to almost 500 people at this point, I hear that people just don’t exercise that compassion for themselves. We are human beings, not human doings and we need to get better just being. Just being still with ourselves, and that is what it takes to heal from this injury, is just ‘I’m just going to make it through this day. It’s all I have to do. That’s my only charge, is to make it through this day.’

I guess what I would also add though is I really do want people to understand my life though is not perfect on this side. I did go through a divorce, I am single. It was very hard to go through COVID alone, without anyone, when people were not even letting you in at all. It’s been really challenging but I can have a hard time, but I never thought of myself as a strong person, not like this.

Moore: Renee, it’s been so eye-opening and amazing to hear about your experiences. I have to say the book, as I said at the start, it’s so beautifully written but describes such awful experiences, but there is so much hope in it too for the person that you were at the start of the experience to the person you became at the end, and all that you’ve achieved and learned, and the help that you give to others. I am so grateful to get you on the podcast.

Schuls-Jacobson:  Thank you, James.

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If you want to find out more about Renee, her website can be found at RasJacobson.store, here, you can purchase her book and she offers a blog, as well as showcasing her artwork and so much more. Her book is also available from Amazon in print and for Kindle devices.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

4 COMMENTS

  1. Does that “Baby dose” of Clonazepam mean “Baby sized withdrawal syndrome”? Both medicine and the peer to peer folk seem to support this belief.

    ““At 42 months off clonazepam, I can tell that I’m finally healing.” I must offer this: If you had employed the appropriate mode of withdrawal for you, you would have found yourself without withdrawal symptoms on the first day post withdrawal. An imposed withdrawal does not address your unique biology. We’ve been doubly misled by both medicine and by the sincere lay-help. One size rarely fits anyone. Many may object to this post, but someone should remind the benzene-dependent that not responding completely to a formula taper never is the patient’s fault. The tapers used today are simply too crude to fully reverse the acquired dependence. This may explain why people feel better only years later.

    I suggest that being allowed to “hold a dose” is not being in charge of the taper. “Being allowed” is demeaning to your rights and your intelligence.

    . Was this practice validated by any evidence? When did medicine begin to order Benzo Tapers that never were subjected to study of any kind? Without validly constructed study, we are using opinion and not science.

    • Thank you for sharing!

      You said, “I must offer this: If you had employed the appropriate mode of withdrawal for you, you would have found yourself without withdrawal symptoms on the first day post withdrawal.”

      Could you please share what is the appropriate mode of withdrawal as you see it?

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