EPISODE 7: JANET SCHIEL
Hello and welcome to Akathisia Stories, a podcast co-production of MISSD and Chicago's Studio C.
MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.
In this seventh episode of Akathisia Stories, we hear from Janet Schiel.
In 2016 her husband, Joe, was nearing the end of his 37-year career in the pharmaceutical sales business. But prior to making his own announcement of retirement, his boss had a health care scare and retired, and several people at the company were let go, thereby doubling Joe's workload and his regional responsibilities, from half the country to the entire country. Meanwhile, Joe and Janet found their perfect retirement home in the Lake of the Ozarks. But Janet believes the reality of buying and selling homes on top of the workload led Joe to call his doctor. Without talking with him in person, the doctor prescribed the generic version of Lexapro, an antidepressant Joe had briefly been on a decade earlier. When he took the drug then, Janet remembers that he couldn't get a grip on reality.
[Janet Schiel] “We thought he was having a nervous breakdown, and we drove to the hospital and he wouldn’t get out. He said, ‘Just take me home and I’m going to get off all the medicines.’”
In 2016 the adverse effects were significantly worse.
[Janet Schiel] "I watched him change and become depressed and paranoid. And I finally said to him about three weeks into this, ‘What are you taking?’ And I’ve never said that to him in my entire life. And, you know, I don’t even know where the words came from, and he looked at me and he told me and I said, “Don’t you remember what happened the last time?” And obviously he didn’t. And I said, “You can’t take this drug.” I said, “You have got to promise me you’re going to wean off of this. And that’s as much as I knew.”
We'll have Janet's full story in a moment.
MISSD provides a variety of educational programming to meet virtual learning needs. Recently it presented an e-learning segment to the Hazelden Betty Ford Center and is offering the free, accredited online akathisia course to organizations interested in enhancing their virtual conferences. The course is available to all at MISSD.LearnUpon.com. If your organization would like to schedule a MISSD presentation, please contact MISSD.
Janet Schiel is a drug safety advocate who champions policies and practices to stop medication-induced suicide. In 2019, she founded Butterflies for Joe, a nonprofit organization dedicated to spreading awareness about the negative adverse effects of SSRIs, which tragically precipitated her husband's death in 2016. Like many others who have lost spouses to prescribed harm, Janet also lost her best friend when Joe died.
Prior to her husband's death, Janet was the founder and president of Guiding Hand Senior Resources, which helps families navigate the financial challenges of long-term elder care. She currently lives in Denver, Colorado with her dogs Buddy and Annie, and enjoys spending as much time as possible with her two adult children, Luke and Blake, and their partners. We spoke late last year in Chicago.
AM: So in the final weeks off his life, your husband, Joe, underwent rapid change. And that change was drug-induced.
JS: Yeah, my husband was put on an antidepressant for anxiety, short-term anxiety. He ironically was in the pharmaceutical business for 37 years in sales, and he had — was handling, at this point, half the country.
He had had a physical and in the notes that I saw afterwards, the doctor said, you know, what’s your stress level? And he said, “It’s high, but it isn’t anything I can’t handle.” I mean, that was in the notes. And about a week later we found our retirement home that we were going to buy. And I think that was just enough to push him, you know, buying and selling a home, to say, you know, I just need something to get me through this time period.
I mean, he had been on an antidepressant years ago when — during the stress of a job change. You know, I mean, we all, you know — the drugs are out there and they say “Come, you know, take them and it will be great.”
AM: And in that case was it helpful?
JS: You know, it wasn’t, actually. We thought he was having a nervous breakdown, and we drove to the hospital and he wouldn’t get out. He said, “Just take me home and I’m going to get off all the medicines.” And after 37 years together, I mean, I never questioned him about medicine. He was always the guy that said, “Tell the doctor you need this; tell the doctor you need that.” But it wasn’t until this time, 10 or 12 years later, that I watched him go from this great, happy guy — I mean, we were like kids in a candy store when we found this house, and then I watched him change and become depressed and paranoid. And I finally said to him about three weeks into this — we were leaving for Italy the next day and I said, “What are you taking?” And I’ve never said that to him in my entire life. And, you know, I don’t even know where the words came from, and he looked at me and he told me, and I said, “Don’t you remember what happened the last time?” And obviously he didn’t. And I said, “You can’t take this drug.” I said, “You have got to promise me you’re going to wean off of this.” And that’s as much as I knew — weaning off.
You know, he was my pharmaceutical guy, so I didn’t question, you know, what he was taking — until this time. We never talked about it because, I mean, that was a time in our lives where, you know, I went to the doctor and whatever the doctor said was law. You know, and I certainly don’t feel that anymore. I feel that we have to — we owe it to ourselves to question and to do our own research and question the doctors until they tell us what — you know, they’re not giving us all the information. And maybe they don’t know all the information. But we never really had that kind of conversation about the antidepressants.
AM: So why don’t you tell us now about Joe? What kind of person was he? And describe his sort of general demeanor.
JS: He was great. We fell in love. The first thing he said when he saw me was “There’s my future wife.”
AM: When was that?
JS: That was in a bar in Vail, Colorado back in 1986. And we were married less than a year later. And he was a great guy. He was outgoing. He loved to laugh. He had one of those laughs that he could be in another room and I could hear him laugh and I would start laughing. We just — we were best friends, and he was a great mentor. The people that worked with him — I mean, they all loved him. I mean, when he died, we were actually at a business meeting where he was getting an award. And I mean, they all — everybody loved him, and I’ve heard from so many people since he passed about things that he did for them in their lives that I never knew that made all the difference for these people.
AM: And he was a father of two.
JS: Two sons, which he loved and adored, and we just laughed a lot. We were a family that laughed a lot. We loved to travel. We loved to travel together. He loved the kids and their interests and a great friend. Great friend.
AM: So three years ago he went back on this medication.
JS: Right.
AM: How long was it before he or you started to notice some things were not quite right?
JS: I started — he was always on the road, you know. We used to laugh and say, even though we’ve been married for 30 years, we only actually slept together for 25, you know, which was funny at the time. But anyway, so this time period when we found the house and he had all the pressure from work that was piling on him, he started becoming very paranoid and he became very unhappy. And I thought, well, that’s just because he’s home right now and we’re getting the house ready to put on the market and everything like that. But then it just kept getting worse, and so it was probably within I would say a week that I started noticing, but I hadn’t connected the dots yet.
AM: And what were you noticing?
JS: The paranoia over things and not trusting people and just not being able to let go of normal things. You know, you have things in your life that bug you, but you — “you know, all right.” And that’s the way he always was. You know, if he had a bad day or if he was — things weren’t right, he would get up the next day and he’d be ready to go again. You know. So very positive attitude. But this was not positive. This was scary and paranoid and out of perspective, and he started having bad dreams and he stopped sleeping. He was struggling to sleep because he’d wake up with these awful dreams. Never had that. You know, I just didn’t question him. I knew something was going on, but I didn’t know it was until the night before we left.
AM: So tell me about this trip. You went to Croatia and there was an award being given.
JS: Yes. We went to Italy first. We were celebrating our — the 30th anniversary of when we met, and he just — he didn’t want to eat. He wouldn’t eat because he was worried about the sodium and what the sodium would do to him. I mean, not things that — I mean, he was always very careful and watched his diet, but not to that level. He was losing weight. He was eating very little because he was afraid of what the sodium was going to do to him. And these are not, you know, real things.
We were in Florence and we were going to drive up to Tuscany and, you know, we were going to get a car and we were going to drive. But he couldn’t — it was freaking him out. He couldn’t handle it. He didn’t understand. You know, just things that — my husband was always a go-to guy, you know, straight ahead; he was heading for it. This just wasn’t my husband. He just wasn’t my husband.
And then when we got to Croatia, he couldn’t carry on a conversation anymore. And this is a man that’s in sales all of his life and, you know, mentored people and everything. And he couldn’t carry a conversation. We had to actually practice what he was going to be able to say before he could get out there and talk to somebody. He said, “What if somebody asks me what I did today?”
AM: Did he have some awareness of this?
JS: You know, I don’t know. I don’t know that he was — he thought people were listening in our room, that they were bugging — had bugged the room. I had told people on the trip because he wasn’t himself that he was fighting a bug, fighting a flu bug.
AM: And you had the awareness that they could tell that something was awry. Did anyone mention —
JS: Oh, yeah. People would say “What’s wrong with Joe?” And I’d say, you know, he’s got the flu. He’s just not himself. And so I was trying to cover for him whenever I could. And we would go to an event and he couldn’t talk to anybody. And people would come up to try to talk to him and he’d just smile and kind of nod his head. And then they would leave and he would say, you know, “They don’t want me here. They don’t want me here. I don’t belong here.”
AM: And that would never be a reaction.
JS: No. No. I mean, he would be up talking to everybody and hugging them and, you know, laughing and getting a drink at the bar, you know, all that kind of — all that stuff. And, you know, he couldn’t do it. He’d smile and say “How are you?” or he could look at the women and say, “You look so beautiful tonight.” He couldn’t carry it any further other than that.
And I — you know, the sleep deprivation and what was happening to his mind — it was very, very hard to watch. And I just kept thinking, “We’ll get him home. We’ll get him home.”
AM: Did he share that urgency about getting home?
JS: You know, he didn’t — it wasn’t like it sunk in. He was very tormented. He was very tormented. I mean, I didn’t let him out of my sight. You know, I was afraid to. I mean, I just didn’t know what he was going to do. Not that I was worried about — I was never worried about him doing something like what he did. But I just didn’t feel like — I needed to protect him is what I felt like.
AM: So by the time this 10-day trip was coming to an end, culminating with the awards banquet, things had gotten quite bad.
JS: Exactly.
AM: What happened on that last day?
JS: So the last day we didn’t do anything. I mean, we just stayed back and I would read — I would look up positive quotes to try to give positive quotes to try to get these awful things in his mind that he wouldn’t tell me that were in there, wouldn’t tell me what they were. But he — it was just so awful. So we sat on the bed and I would read positive things. And then we actually did role play on how he was going to have a conversation with somebody that night. He was trying, but the closer we got to dinnertime, the worse it got. And he was really pacing a lot. He thought — you know, we had to be careful what we said because he thought they were listening. And right before the dinner, we were to go get on the bus. He said, “I think I’m having a heart attack.” I just burst into tears and I said, “Honey, I can’t do this by myself anymore.” I said: “I have to go get help. I can’t do this by myself anymore.”
So I ran out of the room and I went to one of the guys that worked for Joe, and they were really, really close, and his wife happened to be a doctor and one of the travel directors that were there and I was crying, and I said, “Joe is having a bad reaction to Lexapro. I can’t do it anymore by myself. I need help. He needs help. He thinks he’s having a heart attack.”
So we — the four of us went down the hall, and when we got back around the corner, he’s standing outside the door just calm and our friend Frank says, “Joe, I missed you,” and Joe said, “I miss you, too, Frank,” and they hugged. And I’m kind of in shock because I don’t understand what’s happening.
AM: So when you returned and found him in this more calm state, did you say, like, you know, how do you feel? Like, do you still feel like you’re having a heart attack?
JS: Yeah. And he just kind of blew it off, just like he didn’t hear me.
AM: Like this had maybe never even happened.
JS: Yeah. And my son brought up an interesting point. He said, “Mom, maybe dad moved the table on the balcony to the edge, and the heart attack was to send you away.” So I don’t know. I don’t know. I don’t know.
But he was — I said are you feeling — he said, you know, didn’t even answer. I just was kind of in shock, and then we were swept up with the other people and got on the bus. And it was when we came back to the hotel at the end of the evening and he was standing, just, you know, still for a minute but he was always moving, so he was tossing some coins and then he’d walk. And the phone rang and it was these three people. And they said, “Come to the hospitality room.” And I said, “Do you want to do that?” And he said we have to. And I said OK, all right. So we did. And I remember we were standing around and they got him a drink. And this is the other thing that was really weird: He just stopped drinking. This was a man that had, you know, like two cocktails every day. I mean, we grew up; our parents had two cocktails every day. And he had two cocktails every day, and he just quit. He didn’t — when we got over there he just didn’t say it but he just never had another drink, which was very odd.
I mean, it just got progressively worse and I think the stress when we got to Croatia, for whatever reason. And he — I remember we were all standing in a group and he just stood there and smiled and, you know, everybody was trying to include him, but he just would smile. And when we left, he was holding my hand and he just said “It’s over; it’s all over.” And I said, “Honey, what do you mean?” I said: “Everybody loves you. You know? You got the award. Everybody loves you.” And he said “It’s over.”
So we got up to the room and it’s 1:00 in the morning, and he gets in bed and he covers himself completely up over the head. He’s never done that before. And I thought, well, you know, maybe he’s exhausted. I mean, he’s exhausted; I know that. But maybe he can sleep. Maybe — you know, but he said to me, he said, “Don’t forget to set the alarm for tomorrow.” And I said OK, and then I got ready and got in bed and I was, you know, reading my book. And then he got up and started pacing back and forth, back and forth, and I said, “What are you doing?” And he was putting his shorts on and he said “I”m gonna jump.” And of course, I jump out of the bed and grab onto him and say “No, you’re not,” and tried to, you know, get over to the phone so that I could call for help. And he wouldn’t let me. And I know I was screaming “help” at that point because he’s very strong and I think at this moment, he was even stronger than normal.
AM: Because he was determined.
JS: Right. Right. The mind was snapping. It’s just what happens. It just snapped.
I don’t know what happened in the middle, but the next thing I remember doing is I had slapped his face twice, really hard. You know, you don’t think about it; you just do it. And he’s sitting on the bed now and he looks up at me and his pupils are gone. His eyes are all white. I mean, it was the moment his mind broke. And he just jumped out and ran out the balcony and I ran after him and was trying to grab his feet as he dove off the balcony. That was it.
He was still breathing when I got to him. I mean, I was screaming — you know, obviously as I ran through the hotel and down the stairs. And he was still breathing. And you know, the mind keeps the edges pretty soft as far as the reality of what I was sitting there with as he was breathing. But I looked up and the people were still in the hospitality suite. We hadn’t been gone but 20 minutes. And I look up and I see my friend Frank — Joe’s really close friend Frank and he was standing about 30 feet away and he just said “Someone get my wife because she’s a doctor.” And so she came down and I was screaming. I mean, I just kept yelling “He jumped, he jumped,” and I don’t know what else I was saying at the time. But then it took a little bit before they got the emergency crew there. But they tried.
AM: What were the reactions of the people in Croatia? I mean, I imagine everyone was shocked and couldn’t believe that he had done this.
JS: Nobody could believe it. And when I had to tell people back home, everybody was like there’s no way. No. Joe would not do that. I mean, there’s no way Joe would do that. And I had to clarify with — I remember at one funeral — we ended up having one in Colorado where his family was, and a good friend came up and she said “I understand.” She said, “You know, I’ve struggled with depression,” and all that stuff. And I said he wasn’t depressed. And that’s the thing about these drugs. People think you have to be depressed to be on these drugs, but they’re used for anxiety; they’re used for hot flashes; they’re used for all kinds of different things. So that doesn’t mean you’re not going to react badly. But nobody could believe it. I mean, he was a presence and that’s just not something he would do. Yeah.
AM: When this happened you had no doubt that it was the drug.
JS: Oh, absolutely.
AM: And at a certain point, following the death, you became aware of akathisia.
JS: So after the funeral, and we ended up, actually — they had a funeral in Croatia. And then we came back to St. Louis and had a funeral. And then after that funeral, I had to get on the Internet and start searching. I had to understand. And I don’t even remember what I Googled, but, you know, probably “Lexapro and suicide,” or something like that. I don’t know. But I ended up on Dr. David Healy’s site and I emailed him and he got right back to me. He’s the world-renowned expert on SSRI drugs and these kind of things that happen, violence and suicides, and even more. He put me in touch with Wendy Dolin.
AM: And what did you tell Dr. David Healy in the —
JS: I just told him what had happened, that my husband had been on this for a short term and, you know, had become paranoid and restless and then jumped off a balcony.
AM: And was there a sense in his reply that this was something that he’s very well aware of?
JS: Absolutely.
AM: So when you had become aware of akathisia, were you basically persuaded that that’s what had killed Joe?
JS: Oh, yeah. I mean, as soon as I heard there was a name, that what he was going through there was a name for it, I was like, OK, that’s exactly what happened to him. This is everything that you see or you read about it now, you know, that was him. And then I think the sleep — not being able to sleep because of the tormented dreams, you know, makes everything worse.
Doctors were surprising, though. When I told — I mean, I’ve told several doctors — I’ve had deep conversations about akathisia and drugs and they’re like, “Why don’t I know this?”
My main doctor, she said, “People come to my office all the time and they want the ‘happy pill,’” and she said, “I’m not going to write it anymore.” And she didn’t. She hasn’t written the drug since. She says, “If you want to get on this prescription, you need to go have therapy first,” which, you know, we’re such a pill society that everybody wants a pill to make them feel better, and we buy into the Kool-Aid of “this pill’s going to make you better,” and then people — you know, we have to educate them that, you know, you have to watch out.” It’s not saying that it won’t work for you, but one in six Americans are on an antidepressant, and there are 22 million children around the world on either ADD medicine or antidepressants, or a combination of both. What is this world we’re living in where everybody needs a pill? It’s crazy.
AM: Putting aside, for the moment, the tragic consequence of Joe taking the medication, do you think he was a candidate for medication, or do you think that he would have benefited from therapy?
JS: Oh, I think he would have benefited from the other therapy, but he was a pharmaceutical guy. You know? I think he would have benefited from it, but he just wanted to get through this time period and, you know, that’s what he wanted.
AM: Because he wasn’t seeing a larger context in which he needed to seek therapy; he was trying to get through a period.
JS: Exactly. Exactly. With all the stress that was on him, but it’s like he said to the doctor, “It’s nothing I can’t handle.”
AM: So you started the website and foundation Butterflies For Joe. Can you tell me about the name?
JS: There’s two things. Butterflies For Joe is — it’s a spiritual thing, which we didn’t know and we were visited by so many butterflies and so many signs.
The last day — he hadn’t eaten and he finally said he was hungry, and so we went and sat outside and he got a hamburger. And he didn’t — this butterfly, pale, yellow butterfly, flew between us. And after my mom passed, every time he saw a butterfly he’d always say “Hello, Lucille.” That was their little thing. I don’t know why he did that. And it wasn’t until after he died that I found out about the spirituality of the butterfly and that you’re being visited from people, you know, that love you that have passed. And it was just — we were just bombarded with it, with these butterflies. I mean, people say, “Oh, she’s crazy.” But no, it’s not. It was real.
And then the other thing is the butterfly effect. The butterfly effect is a concept where something as small as a butterfly wing can ripple an ocean that will cause a tsunami around the world. So that’s what we want to do, too, is we want the butterfly effect to spread and to keep spreading so people keep talking about it. That’s how we got it.
AM: And are your sons involved with it, and would you want to speak at all about the impact that this has had on their lives?
JS: Oh, my gosh. They’re involved. They’re both on the board. And they support me and will do anything that I need — I need them to do. Right now, they’re both involved in their lives. One lives in New York City and one’s in Dallas. But they — I talk to them — you know, we text every day, practically, and talk, you know, every few days. And it’s — I’m not even sure how deeply they know that it’s affected them. I don’t think they do. But it’s — we were so close and they adored him, and he adored them. And they miss him every single day.
AM: And you have those conversations?
JS: Oh, yeah. We talk, and we’re — we bring in laughter because that’s what he would want. So every year on the anniversary of his dying, we have a party, a celebration to take back the evilness from what happened and bring it to light and to have fun and to share stories and to have a couple of drinks and eat some good food, but, you know, we invite a lot of people to come share that with us, because we need that happiness to take back that day.
AM: So you took the time that you took to make the foundation and the website, but prior to that and continuing to this day, you are involved with MISSD. Could you talk about the involvement you’ve had with MISSD?
JS: Well, I’m so proud of Wendy and what her group has done. I mean, she’s been such a fighter out there and able to get the word out about akathisia with her videos, which are on my website also. You know, she’s a fighter, you know, trying to get the word out there and let people know that there’s a name and that it’s happening, and it’s not a mental illness that’s happening; it’s a reaction to the drug that’s happening. We’re all trying to support each other. We’re a group of people that — you know, we’re in a club that we didn’t ever want to be in, but we have a great connection, all of those that are fighting.
AM: And it’s interesting how many of you are women.
JS: Yeah. You know, mothers are a different breed. (Laughs.) We are — mother bears will, you know, fight for their children and keep going. Not that dads don’t. I’m not saying that. But it’s just a different dynamic. We’re just different in how we choose to fight for it. So, yeah.
AM: What’s the most important thing someone could take away from this interview today?
JS: For me it’s that they realize they need to question their doctors. They need to question the pharmacies. They need to educate themselves and be aware of what to look out for, and to know that any time you’re putting a pill in your body, you need to let somebody know. It has to be conversations with families. We have to be able to talk about it and not be — people are, like, ashamed. They want the pill, but they don’t want to tell anybody that they’re taking this pill, you know. But you can’t do that. You’ve got to be able to talk about it. So I think it’s knowledge. It’s people being aware of that this is real and it’s happening. And, you know, protect yourself and those you love. Just be aware. Be smart.
I was listening to somebody on a webcast and I remember the doctor said, “Well, you know, before I had heart surgery, they made me watch a video.” Well, why can’t our general doctors have, you know, the nurse is in, the doctor’s out, the nurse is back in again. There’s plenty of time to watch a five-minute video on akathisia and get a piece of paper that says “This is what to watch for,” and then for the first four weeks have a nurse call and talk to them. I mean, this isn’t going to take up a whole lot of time. You know, so I just feel like there’s got to be something done better out there. I did have a doctor argue with me about doing that. “Oh, I would never show my patients anything like that to scare them.” I said, “You’re not scaring them; you’re making them aware.”
AM: Yeah, I mean, it’s kind of like getting on an airplane and they show the video and there’s a sense that, oh, that could happen, but they’re doing it as an informative thing; they’re not trying to scare people.
JS: Yeah.
AM: And this is the kind of thing that can really make a difference.
JS: Absolutely. Absolutely. And it’s — and you know what? If my story scares people, all right. It was scary. It was horrific. And it should not have happened. And that’s the thing. You know, you just want to — people just need to stay on top of the medications and talk about it and, you know, spread awareness. You know, we gotta talk.
AM: It struck me earlier when you said you followed up with the prescribing doctor and she felt a great sense of remorse and —
JS: Yes. She was horrified. She was crying on the phone and left the message “not him, not him, I can’t believe this happened.”
AM: Yeah, whereas other people I’ve spoken to have encountered a resistance or just a complete, you know, lack of contact.
JS: Right. And I think that happened afterwards, because I wasn’t ready to talk to her for a while, and when I did try to call back, I couldn’t — I mean, they were like, “Oh, she’s really busy.” You know, so I’m pretty sure it was a lot of — she talked to her lawyer and he said, “Don’t talk to her again, because we don’t know what she’s going to do.” But I got all of his notes and went through them all and read them and I got his autopsy. It was in Croatian, so we had to get that translated, but, you know. No, it’s quite the journey you don’t want to go down.
The Butterflies for Joe website is available at butterfliesforjoe.org.
If you'd like to find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start.
[Wendy Dolin] "If you go to our website, the section that says What Is Akathisia? you will see the two MISSD videos, as well as we have an educational PDF that you can print off. We also are on Facebook and Twitter. If you like this podcast, learn more about akathisia and just send it to your contacts. And this is the way we spread our message, and I hope that people will really look at the signs and symptoms of akathisia. They’re listed in the videos, listed on the website."
That's MISSD founder Wendy Dolin.
You've been listening to the Akathisia Stories podcast. We'll have another episode next month. If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com and please share this podcast and subscribe. I'm Andy Miles and I'd like to thank Janet Schiel for her time and candor, and I'd like to thank you for listening.