Episode 23- You Are not Alone - Stories of Family emotional Journey with SZ

Are you dealing with SZ in a loved one? Feeling confused? Scared? Angry? Overwhelmed?

You are not alone. We've been there...and how.

There are stages in the emotional journeys of families dealing with Schizophrenia in a loved one. Mimi, Mindy and Randye are now often at the "advocacy/Acceptance" stage - but not always.
In excerpts from our books, and quotes from listeners, we talk about the events and feelings in the earlier stages of the journey. 
From Crisis, to Coping, and Advocacy...and the carousel keeps spinning.
And yes there is hope too.
Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_00 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kaye. Hi, it's Randy. In this episode, you're going to hear us talk about the earlier days of absorbing the news of our son's illnesses, the confusion, the doubt, and we'll be reading excerpts from our books. In case you haven't heard of them, Mimi's book is called He Came In With It, the paperback just released this year. Mindy's book is called Fix What You Can. And mine is called Ben Behind His Voices. All are available on Amazon or wherever you get your books, with audiobook versions available as well. Check audible.com. This is a Just Us episode where we just thought we'd kind of go back in time a bit, read a bit from our books, and we're getting such great feedback from people. One of the things that we're hearing is, oh, you guys know so much, you've been through so much, because our sons are all in their 30s and 40s. But we're here to tell you it wasn't always that way. And it isn't even still always that way. We kind of go up and down, as if you listen to all our episodes, you know that. But we're calling this episode You Are Not Alone, Stories of Family Emotions with Schizophrenia. And mostly we're going to be reading from our books because we don't really talk a great deal about our books in this podcast because we're so about moving forward and having guests on and having advocacy, but it's kind of back to our roots. So sit back and enjoy, we're each enjoy or commiserate or cry or whatever happens. I don't really know which selections you guys have chosen. I I have chosen a couple. And probably for the next half hour or so, you'll, if you haven't read our books or listened to the audiobooks of our books, you'll have a trip down memory lane to what it was like for us in in earlier days. Not that we're out of the woods, but we're we're working on it. I do want to thank our guest Carson from episode 22. His episode has had a record 310 downloads in the first week, which is a lot. All our episodes are picking up steam. People are still downloading them and listening, which thrills me no end. We're getting close to 7,000 downloads. Thanks to you, dear listeners. I just think Carson's episode was so brave. And Carson, if you're listening to this, you have touched so many people. So thank you. And I want to thank uh somebody named Dory, who just put on our Facebook page, which I hope you'll follow. It's called, oddly enough, schizophrenia, three moms in the trenches. And Dory says, You guys are godsend. Just recently found your podcast. My son is 37. We've been through a lot, still navigating the path to get him all the help he needs. So frustrating. Do we get it? We get it. We get it. Absolutely. And another comment from Leslie, who's who's going to be a guest soon. Uh I think September. We have to set the date, but she just thanks us for the podcast and for the work you're doing collectively and individually to improve the treatment of people living with serious brain illnesses. We need as many of us as possible from every single state in our country to actually improve the system. Leslie, we couldn't agree with you more. And we're we're so excited to have you on the show soon. All right. So we haven't really planned this. We know we have a few selections. And by way of introduction, I just want to say that a reminder, we've all taken Family to Family, which is a course provided by NAMI, the National Alliance on Mental Illness. And I know one of the things that struck me the most, and it's a poster that's up in every meeting, is the family emotions that you can expect through every stage of your child's or husband's or siblings or you know, your spouse's, your friends' illness. And our books have been written in hindsight a lot because we are most of the time in advocacy, but still fighting. Advocacy never ends. But I think today I want to bring us back to more of the early days of crisis and confusion, where some of the family responses are shock and confusion and denial, and we're seeing those first signs or symptoms, and we may be feeling angry or guilty or resentful, any of those things. And those stories are in our books, and we'd like to share them with you. We're each going to read twice for about five minutes each, just so you have a sense. So set it up the way you want to set it up.

SPEAKER_02 4:55

And well, this is a little grim, but this is actually about joining NAMI and going to family to family and my sort of learning curve with family to family. I went to the second NAMI meeting. I had to acquire some skills for coping. Craig would do what I asked him, but he was disappearing as things got worse. Nick was roaming the neighborhood, sleeping in Jack's garage, hanging out with some pretty shady characters. Things were bad. The NAMI program was excellent. It was divided into 12 sections, each one tackling one aspect of mental illness. It included things like the signs of mental illnesses, the health system, different medications, law enforcement, and treatment options. Finally, something tangible. We all introduced ourselves. There were several couples, a lot of single mothers, siblings. We came to a young woman with bright eyes and tapered fingernails painted pink. Hi, I'm Latanya, she said. My boyfriend has schizophrenia. We've been together for a year. I truly love him and want to make this work. And looked at that smooth young face and I wanted to yell, run, run now as far and as fast as you can. Back at the table, the parents seemed mostly conflicted, or clearly, one had dragged the other one in. Everybody was sad, scared, and tired. When it was my turn to speak, I said, Hi, I'm Mimi. My son Nick is has is nuts. You could have heard a pin drop. I was politely informed that it is politically incorrect to use the term nuts. The leader took the opportunity to talk about stigma. She passed around a copy of the cartoon that had appeared in a magazine. It depicted a courtroom and a defendant and with the traditional tinfoil hat that is code for insanity. I had such a desperate need to find some humor in my life that I actually laughed. The rest of them stared at me with disdain. Stigma. It might be the biggest impediment to the early and accurate diagnosis of mental illness. Worse than the science of the disease, worse than the manifestations. It multiplies the suffering. The fear of stigma prevents people from seeking treatment. People with cancer don't typically feel shame. Mental illness has such a long history of misconceptions and discrimination. Nobody wants to talk about it. We shove it into corners, we hide anti in the attic, we find other less formidable names that serve to trivialize it as a bit ditzy or cuckoo. We look away from the guy screaming on the corner. Now, the guy screaming on the corner is my son. Okay, I'm going to skip a little bit. We did an exercise in the class to try and understand what it is like to have schizophrenia. At the end of it, the leader called out, okay, stop now. It took a while to wind down. The tension in the room was overwhelming. As it finally fell quiet, the leader softly said, This is what it is like for your loved one with schizophrenia every minute of every day. She explained the neurological workings that eliminated the filter that we all have to prioritize sound. A normal brain is able to pay primary attention to one thing while still being aware of ambient noise. To the schizophrenic brain, it all comes in full speed ahead. After the exercise, we did some sharing. The very sweet couple next to me recounted the circumstances of the past week. Their 47-year-old son was still living on their condominium balcony under a wrought iron decorative table they bought to sit at and enjoy their morning coffee. It had been three years and she and he showed no signs of weeping. David, the overweight IT guy, whose mother and sister have schizophrenia, was a little depressed that week. That week? My sense of humor had begun to wake. I looked at the sad, faded blue shirt that matched his eyes and imagined what it would be like to be him. You couldn't even consider having children because of the genetics. And what woman would sign up for that anyway, aside from the tongue. All he does is go to work and then try and control the damage every day. The door opened and a woman peeked in. Behind her was her son. He was large, scrubbed, and nicely dressed. She was small, round, and precisely made up. It was clearly the big day. She had gotten him to come. She was nothing like me. She was wearing a suit and pearls and had a hairdo. I was crouched in my chair wearing jeans and sporting messy pink spattered hair. But I knew her all right. I sure did. She was exactly like me. That same hopeful expression. Was this gonna be the place that finally improved things? That ridiculous putting a good face on it, determination. This mother, holding the pieces of her broken heart in her own hands, and organ busted so recklessly, so raggedly, that the shards in turn cut hurt. The very hands that were holding it together. Oh, I know her. Walking to my car after the meeting, I couldn't remember what there ever was in the entire world to be amused by. I felt myself hardened against the sorrow welling up inside. The sharp little tip of the corridor licked the skin of my cheek as I yanked it open. That tiny prick of pain was enough. It tore me apart. I sat in the car and railed at the night sky. Where are you? What are you doing while my son is going mad? Where's my mother? Where's my father? You know, fuck you. Fuck you and all the big fat faith all of you believers cling to. If it's true, then where the hell are you? I screamed. Where are you? I wipe my cheek with the back of my hand, saw a faint line of blood. My mother told me that my hands were touched by you, God. That was why I could paint. I go into the colors and the movement, and there I know myself, and there I lose myself. And then there I find myself. So thanks for that, the painting thing. But how about I give that back to you and you give Nick back to me? I'll never paint again. Just please, please give me back my son. The previous week's meeting had been all about violence and the horrible things that mentally ill people sometimes do to others. The data shows that quite often others means mom. I now understand those women who go foolishly into situations of grave danger because they trust their child will know them. I would never hurt them. We see it all the time on the news. He thinks he'll come to his senses, he'll look in my eyes, and he'll stop. We don't believe they will ever harm us. Then out comes the gun, the knife, the icy clench of strong fingers around a throat. And it is too late. I told you it was grim, but I figured worth reading.

SPEAKER_00 12:24

Wow. Um, yeah. I I I would love to comment on it. I don't think we need to. Mindy and I were playing with should we take our video down? Should we put our video up? And finally, I think we'll just all keep our video up and just sit quietly and and react.

SPEAKER_02 12:41

So if you're watching this on YouTube, I apologize for I felt like oh they're they've gone to get snacks. They've heard this before.

SPEAKER_00 12:50

No, I was like, let me let me let Mimi have the spotlight. And then I'm like, wait a minute, maybe people want to watch us listen because I found myself smiling and crying. And so we'll just all three stay present for each other. That's beautiful. You know, and I've read your book, but to hear it again is amazing. Um, Mindy, why don't you go? Okay.

SPEAKER_01 13:11

So I may read um just one because this is kind of long, but we'll see how long, how long the program goes. I really related to Mimi Sue, the bargaining and the howling at God and the swearing and and all of that. But anyway, this is when Jim was in college. In the spring, Jim called to say there had been a fire at their house. Someone needed to come. I drew the short straw again since the legislature had adjourned. As I drove up, this was northern Wisconsin, thoughts of the time Jim and his friend had set the tennis ball on fire flitted through my mind. I told myself it wasn't relevant, but my taut muscles said different. When I arrived, I saw Jim in the backyard smoking, slumped against his stuffed backpack. He looked lost just as he'd looked when Angela, whom he adored, started preschool. When's Aya coming home? He would ask repeatedly, using the name he called her. There were few kids in the neighborhood, so they relied on each other. Jarred windows were visible on the back of the house. Jim's possessions spilled over the grass, his drum set, the tie plant he had brought from home last fall. Thinking of that hopeful day made me feel hollow. When Jim saw me, he tossed away his butt, hefted the pack, and started purposely toward the car. We weren't home when it happened, he said. Our band was at an international festival. As we started driving, I smelled the reek of smoke baked into his things, the way little Jim used to smell after playing with the campfire. Our family had taken several happy trips to a resort in northern Minnesota when the kids were small and there were many bonds, there'd been many bonfires. A neighbor saw smoke coming out a window and called the fire department. Jim winced. Lucky thing, or it would be gone. I didn't know you were doing gigs. I thought of his band that had once practiced rock music in our garage. Even though the neighbors had once called the police about the racket, I loved having them there. It was a rare chance to meet some of his high school friends. Girls had gone wild when they played in the talent show. What started the fire? The fire department is still trying to figure that out. I have a vague image of seeing incense burning when we left, he added hastily. It wasn't mine. Be glad for your thorough father, I said with a smile. You have rental insurance. I wondered if they'd been using drugs, covering up the smell with the incense. I realized I was clenching the steering wheel and deliberately relaxed my hands. Really, cool. The first smile of the day spread over his face, reminding me of his little boy sparkle. Hungry? We can talk about where you're going to stay over lunch. We need to get you settled before I leave. The warm spring days were long and my energy was high, so I planned to drive back that night. I can't stay here. I've had so much stress over this, he said, his tense voice matching his words. I need to come home. There's only two more weeks for God's sake, I said, perplexed. You can't forfeit the whole semester. I looked at him more closely, but saw no sign he was faking to avoid finals. I remembered the time in elementary school when he had warmed a thermometer on a heating pad, claiming to be too ill for school. Mom, please, he begged in a wavering voice that alarmed me. Jim usually took things more in stride. He was certainly not a crier. Rylings aren't quitters, I said, settling the matter, but not my growing alarm. Roger and I had both been strictly raised to be responsible citizens and had tried to raise our children the same way. I couldn't recall Roger ever missing a day of work, and I felt the same way about my legislative work. Angela had had perfect attendance in high school. Jim gave up his protest about coming home. We moved the things he needed into a friend's dorm room and I took the rest. As I drove off, I saw Jim in the rear view mirror looking for Lauren. His face hovered in my mind the rest of the way home and kept me awake that night. I tossed and turned a long while before I could fall asleep, prompting Roger to change beds. One of Jim's roommates later told me Jim had stayed in bed every day of those last two weeks of school. He skipped classes except when there was a final. In one class, the teacher had rescheduled the test date, but since he wasn't there for the announcement, he missed the exam. He begged the teacher to let him make it up, but she refused and gave him an F. The fucking bitch, Jim said with surprising hostility when he called. He had always been our easy-going mellow child. When Angela fussed about the color of a Christmas present, if they had received the same thing in different colors, he would offer to trade. Do you think it's because Jim's smoking pot? I wondered to Roger after I shared my concerns. He was reading his newspaper on the deck. Possibly, but who didn't imbibe in college? He looked up from his paper and smiled, probably recalling his beer drinking days in Wisconsin where he could drink at 18. I think it's more than that. But I don't really know what's going on. I kept standing near him waiting. Usually I appreciated Roger's calm, magic, matter-of-fact nature, but today I thought Jim's actions required more. When I could see Roger wasn't going to offer more about Jim, I slid open the deck door and returned to the house. I was too restless to finish the report I had been reading, so I headed out the front door to walk. When Jim returned home for the summer, he informed us that he and his two friends were transferring to a college in Montana. When I started to protest, he said they had already been accepted. Those were the confusing days. What the hell is going on? Oh, do I hear that?

SPEAKER_00 19:27

Okay. Well, in that theme, I have chosen something called the experiment. Now, if you're new to our stories, all of us had, well, I think um Mindy's son started showing some symptoms a little earlier, had some anxiety and so forth earlier. Um, my son, and I believe Mimi's as well, was kind of like the golden boy until about mid-teens, and then the gradual onset of the illness. And what you're hearing in all these excerpts, you'll hear in mine as well. We just normalize. Maybe it's just pot, maybe it's just a tough adolescence, maybe he needs a therapist. It is a very common, it's what we all do when we think we might be sick. Unless you're a hypochondriac, if you get a cult, well, these days you might think, oh, it's COVID. Yummy. So the COVID has changed everything. But overall, if your nose is running, you don't think I have nose cancer. You think, you know, so you you think of the most normal explanation before anything else. And with our son's mental illnesses, we did the same because it's what people do. This is called the experiment. And it's as my son Ben is is getting sick. And we're playing with different medications. And this is right after I had gone to my first NAMI meeting and said, I'm Randy, and my son has a mental illness. So I knew some background here. We had gone to a new psychiatrist who, after several, had said, Your son has schizophrenia. This one said, Nah, he's just ADD. Why don't you put him on medication for ADD? And I'm sure he's going to be fine. So, hoping it wasn't schizophrenia, we put him on ADD medication. So that's when my son could not stop talking. Meanwhile, he was trying to live his life. And this is called the experiment. Ben couldn't stop talking. Seriously, he couldn't seem to stop. A rush of energy took the form of words and ideas that just kept streaming out of his mouth while I drove him to the theater, where he was in the ensemble of a community theater production of Man of La Mancha. Oh my God, what have I done? Is this my fault? I thought. All I had done was follow the advice of one psychiatrist over another. I also knew that many medications for ADD are not the kind of prescriptions that have to build up in order to be effective. ADD medications work while they're in your system or they wear off later that day. What harm can To do to try it for one or two days. We can always stop and I'll report the results to Dr. Zion or maybe to Dr. Marx. Okay, I was desperate. I weaned Ben off his antidepressants and mood stabilizers and started him on Dr. Marks' prescription for Ritalin. For two days, the results had been remarkable. Ben had more energy than he'd had in months, and the light behind his eyes had come back on. Now, however, he'd crossed the line. Last weekend, the director and I hadn't been sure Ben could stay focused on his performance, or even if he could remain awake and aware, despite how hard he was trying. At last month's brush-up rehearsal, he'd been remarkably focused, friendly, and alert. Now I didn't know if he'd be able to stand still when the script called for it. For a moment, Ben stopped his monologue in the car. He stared at a car coming in the opposite direction. Then he looked at me. Wow, Mom, that is so cool. What is Ben? Well, I was telling you that I think God is all around us in nature everywhere, right? Yes, honey, I remember. I think that's true. Well, I know it's true now. Want to know how? Uh sure, how? Where is he going with this? Well, see that car over there? At the exact moment I said that to you, he turned his headlights on. And don't you see that's a sign from God, the exact moment it shows I'm right. See? Oh my God, what was I thinking? Trying this myself. It had seemed like such a good idea at the time, or to be honest, the only idea. We'd been through so many changes and diagnosis, and each conclusion came with a new prescription. After all that, a diagnosis of ADD seemed mild in comparison. We'd both agreed to try the new doctor's plan, but now it was backfiring. Ben was babbling about his special connection to God once again. And I said, Maybe you're right. There are a lot of people who believe in what they call the synchronicity of the universe. Other people call it coincidence, but still, sign from God is a little strong. Maybe it's true, but maybe it's not. Oh, I know it's true. He said it happens to me all the time. We arrived at the theater entrance. Well, I wouldn't tell a lot of people about that, okay? I mean, you have to concentrate on the show. Oh, okay, mom. I let Ben out of the car and watched him go backstage, then went inside to find the show's director, Katherine. She was an old friend of mine and had known about Ben's situation when she cast him in the show. Listen, Kath, I said, I just want to warn you. Ben is on this new medication and he may not be able to stop talking. I'm so sorry. I don't know what you've got on your hands here. You want me to stick around or take him home? No, she said, he'll be fine. Don't worry, we'll handle it. Ben did make it through the show, though his performance had so much energy that he was in danger of upstaging the leads. No disasters, thankfully. The next day he was much calmer. Ali said he was acting more like a real brother. Where was the happy medium? Who knew the answer? Two days later, I found Ben at the sink. He had his morning allotment of pills in his hand under the running faucet. I'm just washing the pills, Mom. I'm going to swallow them after I wash them. It's a cleansing thing. Later that day, he went out on the front lawn and began to sing loudly to the sky. Allie came to me and said, Mom, he's doing it again. Why won't he stop? This is so weird. Here we go again. I tried another approach. Look, Ben, I said, You're scaring Allie. Can you at least try to act normal in front of her? Ben looked at me suspiciously. His eyes were hard. Well, Mom, define normal.

SPEAKER_02 25:50

So yeah. I can so relate to so much of that. Hey, don't tell anybody about your new ideas.

SPEAKER_00 26:00

You know, we like we just tried to do, we tried our sense of humor, we tried our legislative power, we tried our art, we tried support, we tried to understand. And like you, believing underneath it all, my motherly love for my son could cut through the illness. I believed it could fix him. Yeah. Till it didn't.

SPEAKER_02 26:28

It doesn't matter. The idea of um uh always gravitating towards the less dire diagnosis. Oh, ADD. Okay, yeah, yeah. Maybe they'll buy that. We'll try it, you know. And that was dumb.

SPEAKER_01 26:44

But we're fine with drugs, you know, all of a sudden they seem very good as to why this behavior, because one could stop those and then it would go away. Right. When Jim was getting sick, you know, the irony of it is my grandmother had schizophrenia, and so I you might think I would have recognized the symptoms. So many people, it's their first person in the family, but my grandmother lived right across the street, and still everyone presents differently. And I had her when she was growing up either, but um, that didn't help me out at all.

SPEAKER_00 27:19

Yeah. Wow. Do we each want to do one more short reading? Yeah, I got a short. Okay, I have a really short one.

SPEAKER_02 27:26

Not terribly, but it's it's short enough, and it's real apropos to what we're talking about. All right, I'm a chapter called the medication wars. Nick did not want to go on medication. Dr. Hamill was wrong, he said. I'm not sick. This is a common reaction. Now that he was 18, we couldn't force him to continue treatment. Calmly, reasonably, we explained that the drugs would simply correct a chemical imbalance in his brain and he would feel better. The anxiety and depression would be lessened, and his life would improve. Dr. Hamill tried to diminish the stigma, showing him literature and videos normalizing the issue. I sat with a demented grin on my face and blathered about the famous creative people who had mental illnesses. Isaac Newton, Nick, Brian Wilson from The Beach Boys, the artist, Edward Moore, Vincent Van Gogh, Ted Turner, who's very famous and successful, he is bipolar. Patty Duke, it didn't ruin her career. For God's sake, Winston Churchill, who is your father's sixth cousin, he had depression and possible bipolar, and he saved all the Jews from Hitler. That's right, your relatives. In the end, we paid Nick to take the medication. I know this goes against everything we all have been taught about parenting, but I have a note from my doctor. That's right. Dr. Hamill told us to forget the conventional wisdom. What mattered, all that mattered, was to get Nick on the medication. The sooner he was on it, the less damage he was still developing brains, the more hope for a good outcome. Um, a good outcome. This was a phrase I had never used before, and then it became a mantra. Every day in the kitchen, I would give him his meds and ten dollars. His sisters were appalled. No one had ever, even once, offered them money to take their amount. Mom had disappointed them beyond belief, and she didn't have anything near a plausible explanation. They knew about Nick's diagnosis, but really to all of us, it still seemed unreal. We all thought this incursion was temporary. After all, once the 14-day course of the mozzicillin ended, everything was fine. I was still a novice of being the medicine police. Incredible now to admit this, but it never occurred to me that Nick wasn't swallowing the tablets, cheeking it, as I now know it's called. I had seen one flew over this couka's nest and thought it was a great movie. I, like everyone else, saw Nurse Ratchet as a villain. The rebellious McMurphy was my hero. Martini and Chief Promden were his oddball portals. They were just misunderstood and unappreciated by the rigid normal order. The book Survivor Schizophrenia by E. Fuller Torrey is regarded as the standard reference book on the disease. For me, it's a Bible. In the back of the book, he has a section called 50 of the best and 15 of the worst books on schizophrenia. Imagine my dismay to see the book on which the movie is based, One Flow Over the Cuckoo's Nose by Ken Keesey, listed by Dr. Tory as one of the worst. His point is this the patients are depicted as oppressed, not sick. As McMurphy tries to mobilize them to challenge the evils of the state hospital. In the end, Chief Bombden escapes to live happily ever after outside the facility. In reality, he probably would have joined the legions of homeless who live under bridges and alleys. I'm gonna skip a little bit ahead to make this. Nick's behavior didn't improve. Of course, that was because he wasn't taking the medication, but I didn't know that yet. Agitated and combative, he started stealing, he taking what he wanted from the girls' rooms, from my purse. Lucy ran into the kitchen crying, sat at the table and said, I have to tell you something terrible. What is it? Mom, she couldn't talk. She just held her head in her hands. Lucy, please, you're scaring me. I went into your room to use the bathroom, and Nick was in there. He was over by the window seat. At this, she started wailing. He was stealing money from your purse. This was so unthinkable, so impossible that it shook her to the core. In a million years, she couldn't imagine stealing money from her mother. What is happening, mom? How could he do this? I had no answer for her that wouldn't make it all worse.

SPEAKER_00 32:15

You get it. Yeah. Yeah.

SPEAKER_01 32:18

Mindy. Okay, so mine is a section where um Jim is in the psych ward for the very first time. He had um punched some holes in our house walls and done property damage. And we had called, I had called the police, and they came and said there was nothing they could do because he hadn't he wasn't dangerous, imminently dangerous to himself or others. And um, but however, when I made a big fuss, they finally called a crisis team that came out and took him. And that was the best result we ever had from a crisis episode in 20 years. But we didn't know it at the time. I thought it was terrible, and I worked on legislation to get rid of that imminent dangerous bar. But anyway, Jim ended up in the psych ward. This is a a little vignette from the second time I visited Jim in his first episode in the cycle. Jim was perched on a chair next to the same window. He stared out, then back at me. I waited, wondering how to begin. I was having the best summer of my life, Jim accused me in a slow, hostile voice, until you screwed me over. Why'd you call the police? I took a gulp of air. To keep you safe, to get you medical care. I'm not sick. He pursed his lips and blew air at me as if he were exhaling cigarette smoke. Then he spit into a nearby wastebasket, his way of purging me. They're torturing me here. No, they're not, honey. He glared at me. You're not my real mom, are you? I blinked back tears. You aren't my real son either, I shouted in my head. I should have married my soulmate. Then none of this would have happened, Jim loudly interrupted my silent shouting. And I'd be the new devil. He stared balefully at me for a long second and then stomped off. My throat swelled shut and I gasped to breathe. This was the first I'd heard of any of this. Even Grandma Teddy, who also had schizophrenia, never came up with shit like this. Shit that my son now believed was true.

SPEAKER_00 34:48

We feel you. We feel you. Coincidentally, I also chose the selection from my son's first hospitalization, which I was a long time coming for a long time. He wasn't sick enough. He wasn't sick enough. He wasn't an imminent enough danger, and so on. And he is in a hospital I call, I believe, West Hills in the book. He has just refused to sign, uh, sign himself in after his 15 days are up. And so I have to go get conservatorship. Left with no other choice, I called the courthouse and arranged to get there on Monday morning, three days away. Later that day, I got the call from the hospital. It was Mora, the blonde nurse who had always been kind to Ben and me. We had a little incident late this afternoon, she said, and I wanted to tell you what to expect when you come to visit tomorrow. Ben had tried to escape. He had simply decided he was leaving. He'd said, I want to go home and had asked for his backpack so he could leave. When they refused to let him into the office to get it, he'd become agitated, then gone toward the office. Things escalated as the staff tried to stop Ben from leaving, and he in turn became more insistent. It took five men to hold him back. He wanted to leave that badly. Finally, they got Ben into the restraints room so he could calm down. Mora said that at that point he'd been actively psychotic and had uttered statements that contradicted each other, such as, I'm going to take a shower, but I'm not going to take a shower. He'd remained restless and ready to bolt, resisting efforts to convince him to return to his room, thrashing and protesting. Finally, they'd had to inject him with Haldol and Atavan, an antipsychotic and a tranquilizer. Ben, in restraints, emergency injections. This just kept getting worse. How is he now? I asked. He's asleep in his room. He'll probably asleep for quite some time. You can see him tomorrow. Did he say anything else? Well, she said the amazing thing is how quickly the injection took effect. Within minutes, Ben was more coherent. He calmed down and said, I'm tired. I think I'll go lie down and rest in my room. And that's what he did. I then go on to explain that Haldol is an older medication with possibly permanent side effects picking up. The next afternoon, Ben slept through my visit. It was easier than our usual walks up and down the halls. On this visit, I could be the nurturing parent, hold his hand as he slept, adjust his covers, observe his sweet, sleeping face. Ben stirred and opened his eyes. He saw me. Hi, Mom, I love you, he said, and fell back to sleep. Fighting back tears, I watched him for a few more minutes. Still in there, I knew, but buried how deeply. After that, Ben went back on his medication for a few days, then refused it again. Behaviors went up and down accordingly. One day he'd show glimpses of clarity, personality, humor, and even appreciation of his meds. The next, he'd be shivering, restless, and unresponsive. I submitted my petition to become Ben's conservator. The court date was set for Thursday, April 4th. We'd bought a little more time. One week before the hearing, I sat with Ben in the game room during our visit. We were trying to play a card game of war, then concentrated on the cards, talking to me between moves. You know, mom, he said, you forgot something. This seemed like a fairly harmless conversation. What did I forget, Ben? You know. Maybe not, I thought. No, honey, I don't know. What did I forget? You know, I'm not going to tell you since you know already. I clearly wasn't going to win this round. Okay, Ben, I'm sorry, I forgot. The card game continued silently for a few minutes. I'd had my fill of war and of this visit. I could feel the welcome wearing thin. I could see Ben was getting tired. Mom, he said again, you forgot something. I sighed. What did I forget, Ben? He looked straight into my eyes. You forgot to take me home. You forgot to take me home. This really got to me. I couldn't help it. Oh, my heart, my aching heart, my little boy. Ben, honey, I said, putting my hand on his. He flinched, but let it stay there. I know you want to go home. We all want you to go home. That's why we're all working so hard to help you get better so you can come home. He looked down at our hands, then at me. Mom, you forgot to take me home. I think I'll stop there.

SPEAKER_01 39:43

Right. He worry you too when you do a book reading that your voice is gonna go wavery or that you're going to cry and not be able to continue. I don't worry about it.

SPEAKER_02 39:55

I think it don't you have the process. Yeah. I thought I rarely get through an event without some climb. It's just love, love you. No, but you should just be real. I mean, because it's like, what what bigger door could you open for the other moms listening to you than just letting that happen and going ahead anyway? You know, that's my feeling about it.

SPEAKER_00 40:23

It's what we do.

SPEAKER_02 40:24

Every time um Nick was in the hot was hospitalized, there was always this part of me that was so relieved, you know, because I would have, okay, 72 hours, oh, 14 days, where I didn't have to worry about his life or death every minute of every day. It was such a relief. So on the one hand, I would be happy, I mean, I would be upset that he was in the hospital again, but on the other hand, it'd be like, oh my god, I can exhale for a minute.

SPEAKER_01 40:53

You know, it's a vacation. Yeah, yeah. It's a vacation. I don't think most people understand that when your child is sick enough to go to the hospital, you're you get a vacation. Yeah, it's true.

SPEAKER_02 41:07

You know, Nick once said something to me. I had gone, this is when I went to his apartment because the word in the neighborhood was he had filled his bathtub with salsa. That was everybody was saying Nick's gone crazy and he filled his bathtub with salsa.

SPEAKER_00 41:26

And that's expensive.

SPEAKER_02 41:27

Yeah, that's I should have known, you know. But so I so I went, and of course, he wouldn't let me in and then chased me downstairs, and then at one point was yelling at me while I was in the car, and I was just so distraught and just wanted to get away with from him. And he looked at me and he said, You know, mom, this isn't how we planned it when I was a kid. This isn't at all how we planned it to be. And I looked at him and I just thought, no shit. Which is sort of an interesting thing, just like he said, Mom, you forgot something. It was like, this isn't how we planned it when I was a kid, what's going on here?

SPEAKER_00 42:03

Yeah. I think at this point, what I would just love to do, because um, we don't want to leave people upset too much. In in case you don't know us, the names of the books are in the descriptions and also on our any visuals that we have. So if we can just each say, for those who don't know, one positive thing that is happening right now with these sons whose early difficult beginnings we have just shared the tears of all that. I will say that right now, my son is relatively stable. We are working on his job is his sobriety, and he's with one possible glitch, but we're letting it go because I think I believe him. He's 26 days. But the more important thing is he's taking his sobriety seriously. And at the moment, the medication he's on is working okay with him. And we had a good visit this weekend. And because we had declared bankruptcy for him, he's having to take a budgeting course. And he calls me to just read the chapters out loud just so I can kind of be there. And he actually understands everything. Like he's uh his intelligence is coming through again. So at the moment, we're in a good place. There is a light at the end of the tunnel, it dims sometimes and goes out sometimes, but at the moment, every good day is a good day. So right now, my son is stable and working to build his life back together.

SPEAKER_02 43:32

Yeah, for me, Nick's better than he's been since he got sick. You know, now that he's on the closetine, he's he he did a tremendous amount of improvement really quickly. Like over the last year, I'd say he's like 60% better than he was. But now it's sort of plateaued and it's a much slower progression from here. But every day is a gift, and he's here with us.

SPEAKER_01 44:00

and he's full of love and light and goodness and it fills us with hope and that's you know it's good thank you and Mindy a good story from you and for me for those who haven't read my book Jim was on clozepine for a couple of years and then he got a great agranulocytosis so we had 15 years without it and that's a large part of my book all the most downs that were going on during that time but uh a couple of years ago he was able to start back on it the thinking has changed you don't have to not take it anymore so he's been on it and he's doing better i don't think his dosages are right but he is um not doing as well as he was the first time on clozapine because things take better when you're starting out if you've had that many years not doing well but he's still doing very very well so my good news is he went with us that last weekend to Washington DC to visit his sister and he hadn't been there for um 10 years uh she's come to visit Minnesota but he didn't feel like flying he didn't want to go or we didn't invite him because he was in some treatment facility not doing well and the last time our son-in-law had seen him had been almost two years and the last time Matt saw Jim Jim was kind of scary and this time they had a really good hawk and our granddaughter got along with Jim and he had only one bout of not feeling well on the plane and when we first got there but otherwise he was good and it was a celebratory weekend. And so for us that's such good news and then also the other piece of good news is um Jim is starting with Dr. Leitman next week and that's a result of Mimi inviting him on the show. He doesn't take many new patients because he's so busy with the ones he has like Mimi's Nick but he contacted me after the show I came to Team Daniel a couple times. There doesn't seem to be anyone to recommend in Minnesota.

SPEAKER_00 46:15

So we are excited to get to meet with oh this is going to be good you'll see it's great and and we want to be careful you know to to not say all of our 7,000 listeners you should all go see Dr. Layton because we have sung his praises but I think the point we're trying to make is that keep searching till you find I know it's hard till you find the treatment that works. Right. And as we know we've had other success stories on here and they were on other medications as well. So we are not doctors and all we know is what is working for our sons and I'll say at the moment my son is knockwood doing pretty well on Haldol, although I preferred the clozepine. So we we aren't a commercial for cloizapine we're just three moms sharing what's working for our children. And to all family members and friends who are listening and supporting someone with serious mental illness as you just heard we know it's not easy but we know the power of love. And I just want to end with one of my first signs that Ben was getting better was a poem he wrote to me for Mother's Day in 2004. And I I dedicate it to both of you and listeners out there who are supporting their loved ones. I'll just read the last paragraph my mom is atop my mountain as I'm below. She pulls me up to help me grow. I will let her help for now I know that often some need help to glow and I shine as I think of her being the railing in the stairwell to help me help myself up a mountain and I love her for it. Thanks.

SPEAKER_01 47:54

Oh and I love that and what a good ending note.

SPEAKER_00 47:58

We're just the railing and the stairwell but they have to reach for it and you know with treatment and support and structure and purpose and love and a little bit of luck things are possible. So thanks for listening and we will be back again with episode 24 we have some exciting guests coming up remember to check out our Facebook page schizophrenia three moms in the trenches you can subscribe to our podcast and get our books bend behind his voices fix what you can and he came in with it. Hey thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling and Miriam Feldman to get in touch with us or to learn more about our books please visit our websites at MiriamHyfenfeldman dot com, MindyGryling dot com or randyk.com