Ideas - Dreaming of Better: Living With Bipolar Disorder

Episode Date: February 11, 2025

Writer and filmmaker Luke Galati says "living with bipolar disorder is tough." He shares the realities of his mental health struggles, what it's like living in a psychiatric hospital and finding a path to wellness. His documentary is both a personal essay and a series of conversations with health care professionals and others who have bipolar disorder.

When a body is discovered 10 miles out to sea, it sparks a mind-blowing police investigation. There's a man living in this address in the name of a deceased. He's one of the most wanted men in the world. This isn't really happening. Officers are finding large sums of money. It's a tale of murder, skullduggery and international intrigue. So who really is he? I'm Sam Mullins and this is Sea of Lies from CBC's Uncovered, available now.

This is a CBC Podcast. Welcome to Ideas, I'm Nala Ayed. I'll just be straight up with it. Living with bipolar disorder is tough. Luke Galati has bipolar disorder, a disease that's little understood and difficult to treat. If you're bipolar, your life is turned upside down in a multitude of ways. People misunderstand you, the world is disjointed, and your future is unpredictable.

When the going is good, I feel balanced and collected as long as I take care of myself. But when a manic episode starts, or what they call hypomania, things start to ramp up. I feel like I have superpowers. It's like a piston in a car engine. Luke Galati is a writer, photographer, and documentary filmmaker who focuses on storytelling about social issues.

A long-time basketball fan, he's advocated for youth basketball programs and directed a film about the legendary Eastern Commerce Collegiate Saints. His most recent film is extremely personal. It's titled When We Reach Out, Who Should Respond? It poses that question about mental health crises like the one he's lived through himself. Then comes the mania. Paranoia takes over. I detach from reality like carrying kryptonite inside of me. And if I'm not careful, the highs turn into a hard crash. I fall into deep despair. For the past three years, CBC Radio has sponsored a program to bring the voices of people with disabilities to our audiences. For two months, each person in the program is trained and matched with CBC producers who work with them to create a program

that can tell a personal story. More about how that works later, but Luke Galati was one of the 2024 cohort. He chose to tell his story about what it's like to live with bipolar disorder. Some of my worst episodes put me in the psych ward. My longest stay, Three months in 2023. I've had time to reflect since then.

Now I want to know, how do other people live with this? Tonight on Ideas, Luke Galati's story about living with bipolar disorder, titled Dreaming of Better. Here is Luke Galati. First, let's get into what bipolar is. From my experience, and from others I've talked to, it often leads to the hospital. I've checked myself into mental health wards a few times. I've also been taken there, against my will.

I particularly remember one night in January 2023. It was the night of my most recent hospitalization. Earlier that evening, I had a virtual therapy session. I was starting to mentally derail. My paranoia and mania were ramping up. My therapist, who I've worked with for years, could tell something was off. She said I needed help and told me to get to the hospital. At the time, I wasn't trusting many people in my life. But I trusted her. After the call, told my dad and together we made our way to the hospital. I still remember

that drive. I sat in the back seat windowed down feeling the cold January air on my face. As we drove down College Street in Toronto I looked out at the city I grew up in. I knew I wouldn't see it for a while. It might sound strange, but the city lights and the store signs at night felt comforting. The future was uncertain, but somehow, I knew the hospital was where I needed to be. But this isn't just my story.

One of the best things was my father visited me regularly and he said, Beth, you have an illness, you're getting treated and you're going to get better. And that was a mantra that I used all these years. I have an illness, I'm getting treated, I'm going to be better. My name is Beth Beattie and I live with bipolar type 1. Beth is senior counsel for the Ministry of the Attorney General in Ontario. Her job is high stress. I was hospitalized on one occasion during the Christmas holidays when I was 35 years old. I had a florally psychotic episode where I thought my father was God and my nephew was Jesus.

And it's interesting because my nephew had been born on Christmas Day three years earlier, so it all made such sense to me. So my family finally was able to convince me to go down to CAMH, the Center for Addiction and Mental Health, Canada's largest psychiatric hospital. Bipolar disorder affects how my brain controls my moods. It's not just feeling happy one minute and sad the next. It's way deeper than that. I'm a filmmaker, so this is how I'd describe it.

It's as though my eyes are seeing life at 60 frames per second, while everyone else is seeing the world at a standard 23 frames per second. During the Toronto International Film Festival I met Rebecca Love. She's a filmmaker who explores mental health in her work. She also lives with bipolar type 1. The first time I experienced psychosis... Psychosis, as Rebecca will tell us, is when you start to lose touch with reality. You might hear or see things that aren't there, like hallucinations, or believe something that isn't true, like delusions.

The first thing that I remember would have been racing thoughts, like my interior monologue was just moving so quickly and I had so many different thoughts occurring simultaneously and I couldn't keep track of them. Part of my illness meant that I thought that we were all living in a play and everyone around me was just an actor. I also wanted to walk a lot. I wanted to walk four hours. I wanted to walk to my cottage which is miles, miles away from my family home. Sometimes I would go running at the Casa Loma steps at three o'clock in the morning. Some of that was more spiritual, like I remember having a delusion that I was the Virgin Mary and that—

I get what she means there. Like Rebecca, I have had times where I believed I was a prophet. I felt like I had an urgent message to share sent by higher forces. When I experienced mania, I did some pretty out-of-character things. About seven years ago, I bought random furniture online that I didn't need. It's actually still sitting unopened in my house. Another time, I showed up at Toronto Pearson Airport and tried to book a one-way ticket to Banff. No luggage, no ID, just impulse. Oh, and I've wandered, like walked for hours, practically a full day,

and ended up 60 kilometers from home. No plan, no purpose. Seeing my mind was lost feels like an understatement. When you're hypomanic. Sanat Sethi lives with bipolar type two. He's felt the lows. He's also experienced the intense highs that come with psychosis. What's coursing through your veins is just pure joy.

You know, and that's the best way I would explain it. Where for me, I feel so like energized, you know? And that's the best way I would explain it, where for me, I feel so like energized, you know? And so I remember three years ago, I was like trying to learn a language and I was trying to work on my coding skills and I was kind of creating my own little like book, you know? And so there's all these projects. But along with that comes with lack of sleep.

And I've heard it's even worse for manic people, but in hypomania, I've had nights where I didn't sleep or I've had two or three nights in a row where I didn't sleep. And I've heard it's even worse for manic people, but in Hypomania, I've had nights where I didn't sleep, or I've had two or three nights in a row where I didn't sleep. So there's lots of this energy, this excitement, you want to do a million things, but also it's a very taxing thing because you're not taking care of yourself and you're just jumping from thing to thing. So it's almost like being on a roller coaster and you're kind of just like enjoying that experience. And then you look along the track and you realize at some point the track doesn't exist anymore right so it's kind of like it's almost this race against time is your

passion gonna win or is the eventual depression gonna win? I think the public thinks it would be fun to you know have a manic episode I think there is a glorified romanticized version of someone who's like strung out on cocaine, but having a great time. My name is Dr. Claire Sarah and I am a neuropsychologist. I think that's what the public thinks mania is and in my experience, it has never looked like that. It's usually more fearful. It's usually got a flavor of paranoia and because the person has lost insight, they are a danger to themselves. They can't care for themselves. If they are having fun it's scary to watch them.

What's scary is when I'm in it, it doesn't always feel like it's a problem. It feels so good it's hard to believe there's something wrong. But how do you differentiate between hypomania and just someone with high energy? So you can have both bipolar and ADHD but but ADHD is much more common than bipolar, so you should look there first. The difference is people with ADHD, they might procrastinate, they might pull an all-nighter, but they're tired and they want to sleep the next day. A person in a hypomanic episode does not need to sleep, their brain is wired and they will

go for days without sleep and they won't feel tired. And that is a for me when I'm doing my diagnostic assessments, I ask about that because if they don't feel tired I now I'm actually wondering if they have bipolar. Oftentimes people conflate bipolar disorder with media portrayals of people with mental illness. That's Dr. Ishrad Hussain. He's a psychiatrist at the Center for bipolar disorder with media portrayals of people with mental illness. That's Dr. Ishrad Hussain. He's a psychiatrist at the Center for Addiction and Mental Health in Toronto.

They think that bipolar means that people have a split personality, sort of Dr. Jekyll and Mr. Hyde type personality, which is totally incorrect. Other ones that I think not only apply to bipolar disorder but mental illness more generally is the fact that people with bipolar disorder may be dangerous or that they are risk to other people. Again, that is not the case. I've heard people throw the word bipolar around a lot in regular vocabulary. Like when they're talking about someone who's indecisive or unpredictable. Even when someone's talking about mood swings, you hear things like, the weather is so bipolar just because it's sunny one minute and rainy the next. Here's Rebecca again.

When I was on dating apps like five or ten years ago, some people would say no bipolar. So that was really unpleasant. And obviously they're working from some preconceived notion of what a bipolar person is. I know so many of history's greatest artists live with bipolar disorder, a lot of great thinkers, business people, politicians, lawyers, you know, have bipolar disorder. If manic episodes happen often enough, it can land you in the hospital. I've been hospitalized four times now for bipolar. So let's talk about what it's like to live inside the psych ward while being treated.

First, obviously you need to get admitted, which isn't as easy as checking into a hotel. Sanat Sethi, who we heard from earlier, knows this struggle. He lives with bipolar too. He's at times where he felt like the system didn't take his illness seriously. And just a warning, this next clip includes mention of suicide. I went to doctors who said, okay, there's something happening, but we can't quite figure out why it's happening. The problem was very much there, but there wasn't an easy, oh, you have a problem with your liver or that kind of thing.

So this kept getting worse over the summer between like, you know, July, August, September, October. It gets worse and worse and worse. And I'll be honest with you. I basically was struggling quite a bit with this. I went to emerge a few times. I started drinking a little bit to kind of cope with it. And it just got to a point where I started having suicidal thoughts. And it just got to a point where I started having suicidal thoughts. And I actually went into eMERGE one time for suicidal ideation. They said, you seem like you're okay, so I came out. And then the second time I went, I was kind of of the mindset that I was like, listen, I'm not leaving until I get the help I need.

And so I spoke to the doctors and what we decided was it was best to enroll into the psychiatric ward, get some of the psychological help I needed. But yeah, it was actually for me, there was actually a physical trigger that caused kind of an emotional mental trigger, that suicidal ideation. And then after that is when I finally was like,

I need to go to the hospital. How did it make you feel knowing that the first time you went there, they turned you away? What, how do you think looking back at it now that you have some perspective? You know, looking back now, it's very disappointing that they didn't even, for example, you know, do a psych hold, like the 72 hour psych hold. And so it is disappointing because I think like I went in there asking for help, you

know, and, and like they, they did, to be fair, put me in touch with a psychologist, I think in there asking for help, you know, and like they did to be fair, put me in touch with a psychologist, I think, in the department. I spoke to them Wednesday, but it was like, it just seemed like no one had the urgency I had. I was like, here I am, having some really awful thoughts about what I wanna do to myself. And like no one seems to have the same sense of urgency. So it was very disappointing.

And that's why when I went the second time, I was if I'm leaving I'm leaving kicking and screaming like someone's kicking me out of here you know and so the first time had a very big impact on I think how I'll think about our health care system forever. If you or someone you know is thinking about suicide you can call or text 988 from anywhere in Canada. Now even though you feel like you need to be in the hospital and your community or loved ones agree you need to be there, it's ultimately up to the doctor, a psychiatrist who decides if you can stay. I rang up Dr. Ishrad Hussain to ask how he decides. Generally, it's determined by the severity of the illness that we are observing, and

that is often tied in with a safety assessment, whether the patient is safe enough to leave the hospital and to be treated in the community from home. And that safety assessment often involves an assessment of their risk to themselves or a risk to other people. On the flip side, sometimes you don't realize you need to be hospitalized until you're already out. That's mania for you. It makes you believe you're fine even when you're not.

Someone could try to explain why your choices are risky, but in that state, you'd probably argue that they're wrong and you're right. So throughout my entire time in the hospital in the psych ward, it was kind of a battle between me and the psychiatrists and the nurses. This is Michael Schumo. He's a writer and works in real estate in New Jersey. He's got bipolar one

I felt that I was not supposed to be there and they obviously knew that I should have been there so it probably wasn't until two or three months after once I had kind of cooled off and My mindset had kind of relaxed a bit that I was able to look back and say yeah I was dangerous behavior my life definitely went, yeah, that was dangerous behavior. My life definitely went off the rails and I'm glad that other people were able to realize that and step in. When I was first admitted to the hospital, I was brought into the ICU. That's the intensive care unit. It was small. It had a tiny window with a curtain. It gave the idea of privacy, but not much else. The nurse's station was across the hallway. You could hear and see everything.

There were other patients there too, most experiencing some of their lowest moments. It wasn't easy being surrounded by that, but it reminded me I wasn't alone in what I was going through. The thing that is kind of unique about a psych ward compared to other places in the hospital is because you're worried about the way different people can harm themselves, right? They try to minimize everything that will do that. So the rooms themselves are barren except for a couple of outlets. There's nothing that extends from the walls where you could potentially harm yourself. There's very little that you're actually allowed to have. Like if you have a laptop, you can't have your power cord, the power cord is up with the staff, they

charge your computer for you, you can't have any kind of long cord. Even the, what's it called in your PJs, the... I think what you're referring to was a drawstring. Drawstring. Yeah, yeah, that's it called in your PJs, the... I think what you're referring to was a drawstring. Drawstring. Yeah, yeah, that's it. You're not allowed to have that because people, again, you can hurt yourself with that. Once I got healthier, I got moved up to the 17th floor.

This new space felt different. The room was bigger. I even had my own bathroom. That was nice. It felt like progress. I remember a steady stream of nurses checking in on me at least three times a day. Most of them are a blur now,

but one nurse really stood out. He made a big impact on my recovery. Nearly two years later, I reached out to him. I wanted to know what it was like to care for me, a bipolar patient, from his perspective. My name is Lucas Goldman. I'm a psychiatric registered nurse and I've been working for well over a decade. What did you notice while working with me? Well I noticed that you you're having a lot of difficulty and this is a long time ago, bear in mind. I don't want to put words in your mouth. I

noticed you're having a lot of difficulty connecting with the system and I wanted to assist you through that. And through working with you very closely for like the span of several weeks, we did form a connection, and I was able to address some of your concerns and assist you in your ability to trust this giant, huge, heartless system.

I think also like the idea of fight or flight. Yeah. When you're in a hospital, in that type of setting, you can't really fight or flight. Yeah. When you're in a hospital in that type of setting, you can't really fight. Right. So what I was trying to do is put up a front to kind of fight against what at the time I thought was people with misintentions towards me.

Right, right. That makes perfect sense. You wanted control in a situation where you felt vulnerable. Okay. I would say so, yeah. I think the biggest thing was the trust issue. So you're in a situation where you felt vulnerable. Okay. I would say so, yeah. I think the biggest thing was the trust issue. So you're in a room, a different environment.

It's kind of cold. The lights are a little bit darker than most rooms might be. And that's obviously by design. We try and decrease stimuli in order to, you know, through evidence-based information, we know that it assists patients in getting better. However, the room's not welcoming. It does feel a little bit cold and impersonal.

You feel like you're institutionalized. And that's obviously what designed because we wanna make people feel like there's something to work towards. There's a better life for them back home. They wanna feel more welcome at home. So we want you to feel less like you're at a hotel and more like you're at an intermediate place

where you're going to get better and you're going to feel the desire to go back to something more conducive to your well-being. Life in a mental health ward is structured. I'd wake up, nurses would check my blood pressure three times per day. A psychiatrist stopped by to ask about my mental state. After leaving the ICU I was allowed to watch TV in the common room. Meals came to my room, same time every day, breakfast, lunch, and dinner. At night I take my meds and then do it all over again the next next day, every day, for three months.

That's the point of the psych ward. The structure, meals, meds, sleep, and some exercise, all helped bring my mania down and kept me steady. Visitors came to see me every day. That made the days feel shorter. I didn't connect much with the others in the unit, but the visitors kept me going. Sanat's experience was different. He found community in the psych ward. The longer I was there, the more people I got to know. I actually made some really good friends.

We used to watch TV together. There was the World Cup at that time, so we were watching the World Cup together. We watched these stupid Netflix shows about cooking and that kind of thing. So the socializing for me was awesome. When I first got into the hospital, I couldn't sleep. I was in a new place, not my own bed, and I wasn't moving much, just sitting around all day. The staff gave me sleeping pills for a while, but I didn't want to rely on them. So I started walking, just pacing back and forth in my room, wall to wall.

I had two yellow smiley face balls, and I'd hold them in each hand. I touched the wall with each ball. I did this for hours and hours on end. I felt like a lion in his cage at the zoo, pacing back and forth. I remember telling myself, if you can't run right now, just walk. Part of my walking is tied to a history of disordered eating, where I suffer from pretty extraordinary body dysmorphia, and I always want to have a smaller body and part of that looks like starvation which

is what partly led to my psychosis but then this overemphasis on walking or moving is all tied to burning calories. I also started writing hundreds of pages at first it barely made sense, but it helped me get out of the racing thoughts from my mania. Over time, my writing started to make more sense. It became clear as I spent more time in the hospital. Michael, who we heard from earlier, did the same. One of the difficulties that I had was refraining from talking to people and, you know, I was just kind of babbling to everybody.

And so eventually a nurse kind of took me to the side and gave me a notebook. And as you just mentioned, I just started writing across it and I filled up probably 30 or 40 of these kinds of, you know, marble notebooks and I actually still have some of them. So far we've shared what life is like inside a mental health word, but this is just one side of it. It's not all structure and community. The word can be a very dark place. On Ideas you're listening to Dreaming of Better, Luke Galati's story of living with bipolar disorder. You can hear ideas on CBC Radio 1 in Canada, across North America on SiriusXM, on U.S.

Public Radio, in Australia on ABC Radio National, and around the world at cbc.ca.ca. Find us on the CBC News app and wherever you get your podcasts. I'm Nala Ayed. In 2017, it felt like drugs were everywhere in the news. So I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner and I'm back with season three of On Drugs.

And this time it's going to get personal. I don't know who sober Jeff is. I don't even know if I like that guy. On Drugs is available now wherever you get your podcasts. Luke Galati's documentary, Dreaming of Better, came out of a CBC project to develop new voices on air, specifically new voices from the disability community. The project has been running for three years now. Each year, two or three people come through an audition process to work on an eight week project in

which each person produces a one hour audio documentary. There's a week of training and ideas developed and about six weeks later there's a fully fledged program ready for broadcast. And Luke is here with me now. Hello, Luke. Hello. So good to be with you. Thanks for coming. Absolutely. My pleasure. You went through this long process that I just described. How did you get involved?

How did I get involved? So I previously worked with CBC Sports for a little while and during that time I made some connections and last summer actually I was approached about joining this program and at the time I thought it'd be such a great opportunity. I come from a background as a documentary filmmaker and I thought it'd be a great challenge to make a radio documentary and I learned so much doing it. Can you talk a little bit about the process and just what was involved in making this documentary? Yeah.

So, one thing that was really special was we had a lot of really great training, some really great instructors, and we also met really inspiring people who work in the building here at the CBC. And, you know, with those things combined and learning how to be an on-air host and also honing our story and really finding the story that we wanna tell, I think we made something that I'm very proud of. You have a lot of talents

that predate you coming to this building. What was it about this specific program that made it a good entry point for you? I think one thing that really interested me about this program is that we could take it wherever we wanted, so to speak, within reason. So we kind of had that freedom to tell the story that we wanted. And, you know, I ended up wanting to talk about my own condition of living with bipolar disorder. And for me, that was a challenge because I was being vulnerable. But at the same time, I think from pain often comes purpose.

And in the end, we were able to speak with people who've also gone through living with bipolar. We also spoke with medical professionals who I worked with. People like your own doctors. Exactly, yeah. Social workers who I worked with. Even the person who coached me when I was a kid as a basketball coach. And now we coach together. And even the nurse who took care of me when I was a kid as a basketball coach and now we coached together. And even the nurse who took care of me when I was in the hospital.

There were just so many people and you know there's the expression that it takes a village to raise a child. I may not be a child anymore but it made me feel a sense of gratitude about all the people who have been there for me. As you say, a whole village. It's such a challenging thing telling a personal story and as you say, it makes you very vulnerable. What were you hoping will be heard on the other end of the microphone? People listening? I think that's a two-prong question. So I think the one thing is people who don't live with bipolar. I hope that it provides them with an understanding that, hey, this is what people go through. And maybe, you know, if they see someone going through it, maybe next time they're just that much more empathetic.

They have a better understanding, you know? And then also when it comes to people who live with bipolar, you know, I think that it hopefully made them feel seen. Hopefully they could relate to it. And I've been blessed to have gotten, you know, messages from across the country of people saying how it really made an impact on them, from professionals to people going through it.

I remember one message was really special is, you know, I lived with bipolar for 30 years and this was like the greatest representation I've seen of the condition. And for me that was very special because you know, it took 30 years for that person maybe to feel represented and to be seen. And I think it's something that's very relatable

if you've gone through it. I know when I was doing the interviews with people, I really related to what they said, and I've never heard that before. So that for me was very meaningful. Yeah. I know you said there was a whole village of support around you, but is it part of the nature of the condition

of having bipolar disorder, for it to be a very lonely experience? I'd say when you're going through it, it's not necessarily lonely, but when you kind of come out of it, you kind of, you can feel embarrassed. Maybe you did some things that were like out of character. So I'd say for me, like, when it comes to the lonely aspect of it, it can be lonely trying to kind of like bring, put the pieces back together in your life. Especially like, you know, back together in your life,

especially like, you know, if someone doesn't understand, so, you know, hopefully maybe, um, someone who listens to this, they will understand, you know, give that person grace. That's beautiful. Thank you. Um, as a filmmaker, you've been committed to advocating for a better approach to mental health issues and you made a film documentary as well. And it's called when we reach out, who should respond? Uh, so it looks at the topic of mental health, um, and the crisis response here in Toronto. What did you want to accomplish with that? I think with that film, um, it was at a time where there are so many people

who were being killed, who live with mental health challenges during police calls and, um, you know, it just wasn't right. Like, it wasn't the right response. And, you know, I've been through episodes where I've struggled or I've acted out a character. And, you know, it's genuinely like, I was doing it for me because I feel like, you know, I could possibly be in these troubling situations

and other people can. And, you know, it was with the goal of, you know, safety and actually getting the right people to come to calls of people who are in mental health distress. And there is now a program where the police aren't the first responders, in many cases. It's not perfect, but I think it is a start. And I think that making that film at that time, you know, it captured a moment in time where the policy wasn't right.

So that was very gratifying. It feels to me like what you're doing is filling a void that's out there in terms of advocating for people for mental health. Is that about right? I would say so, yeah. Even though that may not have been my goal, I think that, you know, I have a unique position

being someone who lives with bipolar and, you know, I wanna help people. And if I can help people that I can relate to on that level, then I wanna do that. It's something that's meaningful to me. And it's something that not everyone may be able to tell a story like I can tell a story. So if I can do that for this community,

then that's a blessing. On a sort of semi-related topic, basketball also plays an important role in your life. It also has a connection to your work as an advocate for mental health issues. How so? Basketball and mental health for me actually are kind of intertwined.

I'd say growing up, you know, basketball was an outlet for me to really express myself. And if I was ever feeling upset, I could just go to the basketball net right next door to my house. What did it do for you? It gave me friendship, but it also gave me meaning. Because, you know, every time you shoot a basketball net, you're trying to make it. And then if you make it, you're achieving your goal.

So when you shoot on a basketball net, you're achieving your goal hundreds, maybe even thousands of times if you're out there all day. So, you know, basketball for me has just been an amazing outlet. Also, you know so many people, I walk around the city and I see people, I shake their hand because hey where did we meet playing basketball? Whether it's outdoor or indoor, it's a game that is more than a game. So we've heard the first part of the program, what comes up next? So next we'll be talking about you know what it's like to live in a psych ward for a given amount of time. It'll also talk about the steps you need to take to kind of heal and move forward.

And ultimately, and I think the goal for anyone who lives with bipolar is learning how to live with it and how to live a happy, healthy, and meaningful life and to know that you can get through it. Luke, thank you so much for making this documentary and for being here today. Thank you so much. Now we're going back to your documentary. Here's the second part of Dreaming of Better.

The word can feel suffocating. You're surrounded by people at their lowest points while you're trying to climb out of your own. I was admitted into the hospital in the middle of psychosis and my parents left me at the emergency room. And at one point I got scared and I wanted to leave. Here's Rebecca again. She's the Toronto-based filmmaker.

Keep in mind, during psychosis, memories can be blurry. Rebecca told me that sometimes people experiencing it can be unreliable narrators, but this is how she remembers it. Anyways, I got scared in my tiny little room where I felt so claustrophobic, and I tried to leave. The security guards body checked me against the wall and then carried me back, like wrestled me back

into my tiny little room and put me in restraints. And they kept the light on. So I was staring up at this bright light and I thought, I thought they were trying to kill me and I thought I was dying. It's the single most terrifying experience I've had in my whole life. My most traumatizing moment of my whole life was this moment where I was wrestled into restraints. And when you're in restraints, you can't move. You feel like you're... I don't want to use the word torture because this does not qualify as torture. This is not torture.

This is a medical team that's trying to keep you safe. But that's what it feels like internally. It feels like they're torturing you and it's a mental torture. And it created a lot more trauma than my actual illness. I can relate to that. Once during a hospital stay, I refused to take my medication. So they put me in restraints. Big security guards held me down and strapped me to the bed. Being restrained was painful physically but also mentally. Then they injected me with something. In

my mind it felt like poison. I thought I was gonna die. I was terrified. With the medication you're afraid that it was poison. I explained more of this when I spoke with Lucas Goldman, one of the nurses who cared for me. You're afraid that someone had ill intent towards you. It wasn't even just like poison. I explained more of this when I spoke with Lucas Goldman, one of the nurses who cared for me. You were afraid that someone had ill intent towards you? It wasn't even just like poison. I just also felt like some of these medications like I have had pretty bad experiences with in terms of some side effects.

So I think that my like initial skepticism of some medications kind of made me feel like they're not good for me and like these side effects are just not worth it. And I almost felt like I had to like survive while on the medication rather than like, okay, these medications are here to assist me. During mania, I believed my meds were part of a conspiracy. When I wasn't manic, I still hated them.

They made me gain a ton of weight. Rebecca felt the same. And then you get hospitalized, and then they put you on these medications, and I had the exact same experience where I'd come home, I would put on so much weight. One time, I think I put on 50 or 60 pounds within the months following my hospitalization.

The medications make you feel tired, they make you feel bloated, they make you feel hungry. You know, months would go by with just me sleeping and eating. That's all I could handle and that's all I wanted to do. So I think that's another aspect of this condition that's not spoken about as much is this the the havoc that bipolar wreaks on your on your body and on your self-esteem. When I'm heavier I feel very low self-esteem. Let's hear from Dr. Claire Sarah, the psychologist. She explains why these medications can lead to weight gain. That's that metabolic syndrome, the kind of end result of a constellation of factors.

So some of the antipsychotics, Alanzapine in particular, it effectively increases appetite because the satiety mechanism in your brain, so when your stomach is full, it tells your brain you're full, it turns that off. So people don't feel full, even if they've already eaten a lot, so they will invariably gain weight. It's awful. They're hungry all the time, even if they've just eaten. And so, of course, they're going to gain weight. It also seems to affect metabolism of sugar and can create some insulin resistance. So not only are you probably eating more carbs, and if you're manic, you're not going to make good food choices, right? And so you are eating things perhaps that are going to also contribute to weight gain, and then you develop diabetes. Almost everybody does. And so we choose a Lansapine because the

other antipsychotics have worse side effects. They can create facial tics that are permanent. We call that tardive dyskinesia. Like those are terrible. Your face is grimacing and it doesn't go away when you stop the medication. We learned that from some of the medications that were given to people with schizophrenia for years and years. That's not acceptable either. And so we're trying to pick our battles, lithium, which is a salt, it's just an elemental salt, it works. It somehow stabilizes mood for people, but it is very hard on the liver and I think the kidneys. And so if it's damaging someone's kidneys, they can't take lithium. And now we're like, okay, we're going through all these different medications.

They're harsh, all kinds of side effects. When I was hospitalized from my bipolar episodes, treatment meant ensuring I took my medications on time. I asked Dr. Sarah, what are some of the other options to help stabilize someone with bipolar? Well, I mean, I wish I could say that we could forego these awful medications that have such terrible consequences for people's physical health. We do not yet have the ability to treat psychosis, true psychosis, with talk therapy. It doesn't work. If you're fully into psychosis, we can't pull you back.

Because I guess the chemistry has changed to the degree that you can no longer engage in talk therapy in a meaningful way. Having said that, I do think lifestyle factors like really having very good sleep hygiene because if someone is sleep deprived, it increases their risk to shift into mania. So really making sure that they have good sleep hygiene, they're taking their medication as prescribed and they're eating properly so that it's being metabolized the way it's meant to. You can get them on the lowest dose possible and then manage symptoms through the kind of skills, self-challenging, self-talk skills that I talked about when thoughts come in, as well as learning how to soothe themselves and relax their body when they are extra anxious.

Just speaking a little bit about my personal experience, it seems each time that I've been hospitalized, the stay has gotten longer. Is that something that's common or how do you make sense of that as a psychologist? Well, I'm sad to hear you say that and I'm sorry to hear you say that, and I'm sorry to hear you say that, because it's, that tells me that they're having a harder and harder time stabilizing you. I'm not, I mean, I'm not a physician, so I can't say medically in your body what's happening. The literature, interestingly, tells us that as people age with bipolar, it seems to be less severe.

And so you're still relatively young. So I'm hoping that this doesn't keep getting worse as you get older. The literature is at the group level. So it doesn't mean an individual will have that experience. But I'm hopeful that for you, it won't keep getting worse. Having said that, I think as we age, and I don't know if you are having other complications, the medication for bipolar is quite harsh on the body. And so a lot of people will have metabolic complications. They might develop diabetes and then that affects their kidneys. And so they start to have medical problems that they would not have had otherwise. And that can lengthen

their stay because it affects how they are metabolizing their medication, for example. And if their sugars are really high, that affects their cognition. I think it actually can get quite complicated because of some of the negative and unwanted side effects from the medication that keep people from becoming psychotic. We have not got good medications for that. that keep people from becoming psychotic. We have not got good medications for that. But when you finally find what works, it's a game changer. Remember Beth Beattie, the lawyer we heard from earlier? She's a great example of that.

When I started out many years ago with depression, I responded well to antidepressants. I was very reluctant to take them. I think I saw it as a sign of weakness to take medication. But eventually, the depression got so bad that I was very reluctant to take them. I think I saw it as a sign of weakness to take medication. But eventually the depression got so bad that I was like, I will try anything to get better. And I did, I responded quite quickly. I'm on a cocktail, I'm on three different medications

and they work very well. I haven't had any mania or depression for 20 years because I stick with the program and I never miss a dose. And I fortunately don't have side effects. When I got out of the hospital, everything felt like it was moving so fast. I'd spent so much time in a quiet, enclosed space, just waiting for the day I'd finally be out. Then suddenly, it felt like the world hit me all at once.

Rebecca, Sanat, and Michael all mentioned this too. I just know my brain felt very foggy, like slow and foggy, and the drugs just make you feel like you're carrying a thousand pounds on your back, and you're like really slow, and not alert, and not sharp at all. So I think that was just the biggest difficulty is just like sleeping a lot and then you feel guilty

for sleeping a lot but there's nothing else you can do and you're bored and you feel disengaged. I was depressed for a month or two after I left the hospital. Like I loved the experience. I was really grateful for the experience but when I got, I kind of didn't know what to do with myself. I just felt completely lost. I had lost all semblance of my previous life, you know, my job and my social life and all those things before the hospitalization. And now I just woke up and felt like I had to build everything from scratch. And it was very defeating for a long time. Now I just woke up and felt like I had to build everything from scratch.

And it was very defeating for a long time. But as I've mentioned several times now, I have a family that was supportive in that effort. And also was very fortunate to find some care providers who were able to assist me in that transition. Coming out to your peers and owning your condition? That can be really liberating. Just ask Beth Beaty. She told me about what it was like to tell her story to her colleagues.

I made a presentation at one of our monthly staff meetings. That's about 45 lawyers and staff. And I just sat at the front of the room and for 20 minutes told my story from start to finish. And at the end, they stood up and gave me a standing ovation. And once I knew that I had the support of my colleagues I felt that anything was possible and I ended up going making presentations at 20 Bay Street law firms. One of the things that helped me find my footing when I got out of the hospital was basketball. I've been volunteering as a coach for over 10 years now, even before my bipolar diagnosis. I coach alongside Leo Bishop. He's been my mentor since I was 13 years old. Now I'm his assistant coach. You know Leo, just

speaking for me personally, you've been a huge part of my journey, you know, growing up as a young man but also as a basketball player, you know, recruiting me from the house league playing days. Kind of looking back, when you began coaching me in basketball, were there ever any signs or inklings that I might have bipolar or kind of be a little different? Right from when we learned that you had the first episode,

it caught us totally by surprise. There was nothing in your behavior or any indications that you would have a manic episode or a bipolar episode. We, I think for the longest time, and we questioned and we kind of went back in time and tried to see if there were any signs and to this day I would say there were no signs at all that that was going to happen. One thing that was really meaningful for me is you know you continued to include me

on the coaching staff of the youth basketball team that we coach. Was there ever any point where you kind of questioned my ability or debated that? Not in the least. Not in the least. I think you would give us cues as to how much you were willing to do, you know, how much you were willing to kind of work with the kids under our care and that. And I could tell that you had really stabilized. And I thought it was, I knew in my heart it was very important that this component needed to be part of your life, that we couldn't exclude you. And we just wanted to be there for you as a support. It meant a lot not to be kicked to the curb.

Staying part of this community helped me heal. Working with the next generation of Hoopers gives me a purpose. Coaching became a form of self-care and recovery. But in addition to help from my community, social services also provide support to help keep bipolar symptoms stable. My name is Nicole Etherington. After I was discharged from the hospital, I'd meet with a social worker every couple weeks. And we know each other because I was discharged from the hospital, I'd meet with a social worker every couple weeks. And we know each other because I was your social worker.

She'd check in on my mental state to spot any warning signs of an episode. Recently, she came to cheer me on at the premiere of one of my documentaries. It really meant a lot to have her there. When I was getting ready for work, listening to Metro Morning... That's the morning show on CBC Radio in Toronto. And I heard Luke Galati on the radio. I was like, oh my gosh, Luke. I felt really proud and really happy

because I knew that you went through really hard times and really struggled and suffered. One thing that also interested me that um, that I think was rather unique in like our relationship, you'd often come to like where I work. I still remember we would, uh, meet outside Scotiabank arena and a little, a little, um, a little bench that was there. I actually was in that area and I walked past it. There's no bench anymore, but, um, the memory is still there.

I'm just wondering, you know, what was it like from your perspective to kind of be able to be there week after week and have our check-ins? I know what it was like for me. It was very helpful. It was kind of a constant reminder to stay on top of myself and keep myself healthy. But what's that like from your perspective as a medical caregiver? We wanted to meet people where they are and kind of like normalize these meetings. It's just like a normal part of their life. You don't have to like check all the way up to the clinic and make it like this super like kind of like medical thing.

We can just meet like on a lunch break. We can have a chat and I can ask some questions, we can talk together and then you can go back. If you could strengthen an aspect of the medical system, if you could improve it, make it better, how would you do that? Access, being able to access follow-up care, because I know we're talking a lot about early,

because that was your experience in early intervention psychosis, which is meant not to have a waiting list because of the importance of intervening early. So if you have people waiting a long time, then it might defeat the purpose. But those wait lists are building up because there's nowhere for people to go

once they've aged out or finish early intervention program because there's no psychiatrist, there's no family doctors, there's no adult case management programs and then kind of even outside of the medical system, all those social determinants of health, like the Ontario Disability Support Program being such a low amount of money. It really forces people to live in an extreme amount of poverty when they can't work because they're recovering or their work hours are limited or their employers can't accommodate or won't accommodate them. And housing, just all those, there like the medical and then the social determinants too.

Is that frustrating being someone trying to give care? Meanwhile, some of these challenges aren't giving you what you need to help people. It's terrible. So much of my job is telling people like, I'm sorry, that doesn't exist, or it's a long wait list, or you don't qualify. Because even if a program, say like a psychiatry program, does exist, you have to live in like this postal code, you have to have like this specific diagnosis, and you have to have this, like, it's very hard,

or there's no family doctors. I'm telling you, that's my dreaded, at work when I get the referral, can you help this person if I'm a family doctor? I'm just like, I got nothing. So yeah, it's very frustrating. There's no shelter beds, like ever. Yeah, it sucks.

It makes me feel like sometimes on the verge of, uh, like wanting, like, I'm not going to burn out, but I could see how this could lead to burnout and you try to find programs and it feels like a big win when you can. It's like, this is not why I chose to go into social work to tell people no all day. I haven't had a manic episode since April 2023 and honestly I'm proud of that. I mean look at me, I'm hosting a national radio show. People with bipolar can do big things. With the right support, they can be stable, capable, and reliable. I'm a perfect example. But I've learned I'm not alone. There's so many others who have been through the same, like Rebecca Love. People living with bipolar are just people, and they

can be wonderful. They can make beautiful art. They can be great friends. They can be great partners. They can be great parents. But I be great partners. They can be great parents. But I think a lot of it has to do with holding ourselves accountable, planning around our illness, being very clear about our needs and limitations, and just trying our best to acknowledge that we need to be responsible for our disease, but we can still make wonderful contributions to our communities. This journey has taught me a lot about myself. There were times where I could have given up.

I almost dropped out of university because of my mental health. This was before I even knew it was bipolar. I am one of the most reliable lawyers, one of the most hardworking lawyers, one of the most stable lawyers. Here's Beth Beatty. I'm not saying that to blow my own horn. I'm just saying that because it's a reality. Just because I have an illness doesn't mean that I'm not as good a lawyer.

And in many ways, I really do think it's made me a better one. My plea would be to everyone, especially people who know someone with bipolar disorder, just try to understand them even when it's really difficult. And Sanat Sethi. Even if they've just yelled at you, even if they've disappeared on you.

You know, I think the best thing my friends have done for me, the ones I still hold very close to myself, they've been there for me despite the difficulty. So yeah, just I think empathy, like just understand that a lot of what happens to people with bipolar is out of their control and no one wants to be a certain way. No one wants a manic episode or a psychotic break. The way we suffer during those things is very hard to even vocalize. So just extend all the understanding and empathy you can. That would be my biggest message.

At the start of this hour, I told you about how I read tons of books about living with bipolar and was even invited to group therapy. But I never felt comfortable sharing. That's changed now that I've sat down with people and shared stories. It also gave me a bit more clarity. I've learned I'm not defined by my condition. It's just one part of who I am. With the right nutrition, sleep and medication, it can be managed.

I know not everyone gets to share their story like I do. That's why I see this radio program as a way to represent life with bipolar. I don't speak for everyone, but I hope those living with bipolar feel seen and heard. The biggest lesson for me? I live with bipolar, and I will for the rest of my life, but I am not defined by it. On Ideas, you've been listening to Dreaming of Better, Luke Gallati's documentary about living with bipolar disorder. A special thanks to everyone who came forward

and shared their story and to medical professionals for their guidance and expertise. Sanat Sethi, Rebecca Love, Michael Schumo, Beth Beattie, Dr. Ishrat Hussain, Dr. Claire Seara, Nicole Etherington, Lucas Goldman, and Leo Bishop. Special thanks to those who helped bring this project to air. Dennis Kalnan, Anna Lazowski, Kathy Katrib-Reyes, Nick Davis, Anne McKeegan, and Katherine Gretzinger. This program was produced by a Shishfung Contractor.

Additional production for ideas by Philip Coulter. Our web producer is Lisa Ayuso. Our technical producer is Danielle Duval. Our senior producer is Nikola Lukcic. The executive producer of Ideas is Greg Kelly. And I'm Nala Ayed. For more CBC podcasts, go to cbc.ca slash podcasts.