Listeners in the Spotlight, Act 2: Tell Us Your Story (Ep. 72)

The last time we invited our listeners to share their stories, the response was incredible - so we are doing it again!

Here are stories from families dealing with SMI (serious mental illness), including one gentleman who lives with the diagnosis himself.

You are not alone.

You’ll hear about early symptoms, incarcerations, fear, finances, the roller coaster of diagnoses, medications, and relapses…second hits, good periods, HIPAA barriers, and more….including, yes, some success and hope.

We end with ways we care for ourselves. Here is the list from the chat:

• outdoors/nature
• family and friends
• faith
• Swim
• walk, talk with friends, family
• inside Schizophrenia podcast
• NAMI/ Family to Family
• help others
• cry when you need to
• research
• Being an advocate!!!
• enjoy the good moments
• vacations...breaks
• 1. Antipsychotic drug 2. Family and friends 3. Disclosure - talking with people
• walk, podcasts, audiobooks, escape
• celebrate the small
• every little moment is big
• mindfulness
• LEAP is the best communication tool to help with your relationship with loved one with SMI
• connecting with people
• permission to have joy
• Meditation… chanting monks…
•  Dr. Jeffrey Thompson has some great CD’s with brainwaves that help to calm the rough waters and bring peace.
• you don't have to give up joy just because you have grief

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Hosts:

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Transcript

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SPEAKER_02 0:00

She said the voices told her to hurt herself and others, including me and her dad. She was living in fear. She ran away from home. She didn't want to hurt us. I'm really lucky in that she knows her brain is sick. She knows she has an illness and she wants to feel better. Our lives are changed forever, but I do see a future. And I know I'm really lucky. But it's it's a long journey, and you have to be so patient. There's no tough love. You cannot snap people out of this.

SPEAKER_03 0:33

That's a snippet from just one of the stories you'll hear in tonight's episode, Listeners in the Spotlight. As many of our listeners share their family perspectives, and one of our listeners shares his perspective as a person diagnosed with schizophrenia. 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 Feldman, Mindy Gryling, and Randy Kay. Finally, a place to talk about the truth. This is part two of one of our most successful and most downloaded episodes, which was when we invited listeners to speak. It's a listeners in the spotlight episode of Schizophrenia Three Moms in the Trenches. I'm Randy Kaye. I'm here with Mindy Gryling and Mimi Feldman. We're three moms with three sons with schizophrenia. We've written three books, and we're a few episodes away from being at the end of season three of our podcast. We have some amazing guests coming up in the rest of the season, including a woman who has created her name is Charla, and she's created a What to Do When Your Loved One is Missing PowerPoint that she's going to share with us. We also will be closing out the season with Elisa Roth, who is the author of this book. I'm holding it up. If you're listening, you can't see it. But if you're on YouTube, you can see it. It's called Insane America's Criminal Treatment of Mental Illness. And I'm thrilled to say that we're opening up season four with Jonathan Rosen, who wrote one of the most acclaimed books of the year, Best Minds, about his friend Michael and the tragic story of his schizophrenia. So we have a lot of great things ahead for you. Mindy, tell us a bit about Gordon, who's going to be another guest that's coming up. What is he going to talk about?

SPEAKER_05 2:39

Yes, Gordon Levine. He is the executive director of schizophrenia and psychosis action alliance. I'm on that board. And I think both Randy and Mimi know him as well. And he will be telling us about that organization and also the immense amount of advocacy they've been doing lately in Congress, including working with the Angry Moms that we had on earlier. So I think that'll be a really exciting one. And it's perfect for this show because that organization focuses on schizophrenia.

SPEAKER_03 3:17

Unlike a lot of other sort of all-encompassing mental health organizations, which do great work. We are about the severeness of schizophrenia. So welcome. This is about our stories. And so let's get started. Thank you so much for being here. You can find us on Facebook, you can find us on Instagram, you can find us on YouTube, and we're thrilled to have you. The process goes like this. We're each going to have about five minutes to tell our story and listen to each other. And in case you're new to the podcast, Mimi and Mindy and I will each tell a little five-minute version of our story as well. And then in the end, we'll ask one final question of everybody, which is how do you take care of yourself with all that you and your family have been through? This is very similar to a process that is done in many support groups. And I'm so, so grateful to our guests today for being willing to tell their story. So welcome and thank you. I will tell you, I'm having a particularly hard week with my son, but I'm going to tell my story later. Mindy Gryling, would you start with a five-minute version of your story? And I'll gently let you know when you've got a minute left. And if you finish sooner, you finish sooner.

SPEAKER_05 4:41

All right. Thank you, Randy. And thanks to everybody here tonight who's going to be telling their story. So all of us that are the hosts have told our story in our books, Mine, Fix What You Can, Schizophrenia, and A Lawmaker's Fight for Her Son. And I start out with Jim, as a lot of our family members or ourselves start out with schizophrenia, being a perfectly normal kid, but for getting into drugs as a teenager and changing his friends and then going to college and having a full-blown episode and ending up in jail. I had to go to Montana and get him out to get a lawyer and bring him back to Minnesota where we live so that he could get help, which he did. He got really back into shape on his first antipsychotic, went back to college. And then the commons story thought he didn't need to take meds anymore. So he he crashed and then we were kind of where we were for a while. He got onto clozpine, the best antipsychotic in the Gryling family's mind, and also by statistics, and did really well until a lab test, which we found out 15 years later was wrong, said that he had agranulocytosis, a low white blood cell count. So we had to go off of it. And then he had much less effective drugs for the next 16 years. And that's most of what my book was about. If I um had, if he'd been able to stay on clozepine, we wouldn't have had all these suicide attempts that we had to deal with. He wouldn't have jumped off a three-story building and broken his back. He wouldn't have ended up in felony court and on probation. And he wouldn't, he wouldn't have had a lot of those things if he'd been able to stay on a more effective drug. So we mourn that, but we're looking to the future. And that means this coming weekend, we'll be in New York at the Team Daniel, Dr. Leiteman, and Ann Mandel Leitman's picnic in New York. So Jim and I are flying out there. I'm hoping that Jim won't be like Mimi's son last year and doesn't want to leave the hotel room to go to the picnic. But I've got my fingers crossed and we're allowing ourselves an extra day to be there ahead of time. So hopefully we can get our act together. Some of the things that that were the most scary for us when Jim was sick was he was so sick he had such delusions that he had thought he had to harm me, kill me, because I wasn't his real mom. I was an imposter. So I'm really looking forward to Jonathan Rosen's book because that's what got that friend of his into trouble thinking his girlfriend was an imposter. And those of us who have dealt with those really scary situations should know we're not alone either. It's not everybody who has schizophrenia, but it's a heck of a lot of us. And we all have that double grief of being so afraid of our children with their, thank you, Randy, with their severe illness, but then also being afraid of them. Thankfully, that for us was just a couple of years and we're we're done with that now. And so what I would most like people to know is that there is hope. If you get the right medication, the right treatment, then you can do really well. Jim is working, he actually has friends that he sees, and he's a delight for our family and to all be around. So hope is on the horizon if everything works out, which is hard to do with this mental health system.

SPEAKER_03 8:53

Our next story is Lynn's story. And Lynn, go for it.

SPEAKER_06 8:59

Hello, everyone. I'm I'm thankful to be here today um sharing my adult daughter's story. She uh was born in 1986. She is 36 years old, and she is the second of four children of mine. Um, the other children do not have any serious mental illnesses. She um was uh always a dreamy, artistic, creative, gentle soul who loved to read and climb up in trees and read at the top of the tree. And to um, she didn't make friends very well, but she loved people. She just was a little bit of awkward. Um and she was just kind to everybody and cared, cared about everybody and was very bright and did well in school and was a pleasure to have, and all that kind of stuff. So um she grew up as a middle child, so um, and I would have my hands full with various other things. Um she also um grew up in her dad's home as well as mine because we got divorced due to his addiction when she was very young. So that was very traumatizing for her. Um and I remember her when she was two years old and being torn from my arms and having to go to daddy's house and just screaming. And um, and then from then on, she had insomnia at night. So she was the child that was more I mean, they were all highly sensitive, but she was the most sensitive of all my children. Um she didn't she did well in school. We didn't see any problems other than just the back and forth custody stuff that goes on. Um, but none of my kids showed any signs of any trouble at that point. Um, it was um it was in late in high school when you know she started. We did we didn't know if she was it was teenage stuff or drugs or what. So, you know, odd behavior starting, but who knows if that was prodromal or not. Could have been. We don't, we don't know. And it's it's not that important. Um she went to uh Sonoma State College. I'm in I'm in San Diego, so she grew up in California, but she l resides in Vancouver, Washington now. Um and she went up, she went up there on her own volition when we she had burned her bridges with her family members after um living with all of us, and including my mom, and just not being treated, and we didn't really know what was going on. So I know that's a common story. Um, and refusing to get any help, of course, that because there's no problems with her. So um, and we didn't know anything about mental illness, none of us had that education at that time, and we weren't we it wasn't within our our uh scope that that was a possibility. We just thought she was maybe we didn't see any sign of drug use when she when she was with us, but we just thought maybe she was just going through some weird stuff, and maybe um it was from effects of drugs she had taken earlier in her life. So um she called me up one day when she was in college and said, Mom, I need you to pick me up. And we had been very estranged at that point because her behavior had gotten bizarre and she just didn't seem like she wanted much to do with her families. So I picked her up and she said, I need to get away from this college because the be there's I'm I've been there's too many pot smokers here. And I took LSD and this was the first I had heard of any of that because I don't I've never used drugs and I I'm just very sheltered naive about that kind of behavior and lifestyle. So despite my husband being having that problem. So she I I picked her up and she was clean, there was no signs of any drug use, but very bizarre behavior, and she was age 19, and I just thought, I don't even know this person. So just kind of um very bizarre, um ritualistic kind of behavior with her body and things she had to do each day, and it's hard to even remember back then. It was so bizarre, and we didn't know what to make of it. And then she just started acting very strangely, and and it was disrupting our house because I had a I had a child with my second husband, and she was 10 years younger than Casey, and so she was still in the home. And so my mom said, I'll take her. So my mom took her, and then after and my mom can take anybody and she welcomes everybody, but after a year, she said, I can't take this anymore.

SPEAKER_03 13:38

You have about a minute left, Lynn, just so you I know there's a lot of things.

SPEAKER_06 13:41

Oh my, yeah. Okay, okay. So Casey, um uh so long story short, she's been she wasn't diagnosed. Um, she went up to Oregon to get her massage license. I said, Okay, that's it. That's all I'm gonna help you with. And and she got her massage license. She decompensated rapidly, was on the streets about five years in Portland, um, never was diagnosed, wouldn't get help, finally um got incarcerated. Yay! I prayed for that because she was very um living unsafely on the streets, and there were I she would talk about guns and people and unsafe people. So she got incarcerated. We got into mental health court, she got uh didn't pass competency and finally got diagnosed when she was age 32 with uh paranoid catatonic schizophrenia and substance use disorder. And so she was in uh Western State Hospital. They actually found a bed for her after six months in jail and she was given treatment and she got stabilized and then went to a group home after 16 months, uh, was released from the group home and free after six months. And then she, I said, You can come live with us because she wanted to, and she was able to get jobs, she worked full-time, she was stable for 18 months at my house. Then she said, I want to go back to Vancouver. So she did, and she had two jobs, she did great, she got off her meds right away, and she landed in jail again, and now she's currently in psychosis, and I visited her last week, and she um is talking to voices and delusional, and but all the good stuff is that I made lots of memories with her when she lived here. She was with her siblings, her nieces and nephews, my mom. It was so wonderful. I had never been with her like that since she had been a kid. She was communicative, stable, her personality was great, she was functioning. It was just this wonderful 18 months, and I wouldn't trade that for anything. And now she's doing better than ever as far as our relationship goes, and she's trusting me for the first time. So there's a lot of positives, and um I am working closely with Treatment Advocacy Center advocates, and the I'm just talking to people as much as I can, advocating for her, and trying to see if someone can give her a designated crisis responder and get her into some kind of a treatment program because she is absolutely has anasygnosia and is never sick and doesn't need meds ever.

SPEAKER_03 16:22

Thank you. I gave you the extra story because because sorry had to, and luckily we don't have 12 people, so I was able to give you the extra minute. Thank you so much. Greg, would you please? Hi, Greg.

SPEAKER_00 16:36

Thanks. Uh good evening. It's morning here in Australia. Um, so I've written my story out, and I'll uh my brain doesn't do uh off the cuff too well, so I won't look directly at the camera. Uh imagine a young man in his mid to late twenties confined in the back of a police van, eyes closed, straight jacketed and deeply distressed. With an air of urgency, two police officers escort him to the city's main psychiatric facility, where he's involuntarily admitted to a locked ward. Four weeks passed, marked by medical assessments and treatment, as he battles the depths of his inner demons. That young man was me, nearly a quarter of a century ago. I'd just experienced first episode psychosis leading to a life-altering schizophrenia diagnosis. Now, at 50 years old, life is remarkably different. But let's uh rewind first to earlier days to my childhood and adolescence, where I enjoyed a loving upbringing on a rural farm on Australia's east coast. Uh, academic excellence defined my school year school years with straight A's and class topping performances. Venturing from my home in my late teens, I pursued degrees in engineering and science, specializing in civil engineering and geology, taking me to Western Australia, a land of mining and opportunity. And it was there that uh success accompanied me for two years until a dark cloud descended when fatigue and a traumatic encounter on a remote work site unraveled my equilibrium, plunging me into a world of unusual thoughts and experiences. Unaware of the emotional turmoil, it wasn't until two years later in an industry downturn and amid unexpected unemployment that I found myself in a psychiatric hospital. A titanic mental struggle ensued, causing worry for my devoted parents. Medical advice suggested I might never fully recover and that I'd need care indefinitely. But I found that with the support of my mum, a retired nurse, uh, there was a beacon of hope. Through voluntary work and short-term employment opportunities to climb towards the light began. I also had the solid social connection of a loyal childhood friend, which was a godsend in trying times. I was nonetheless in limbo and wondered if I'd ever lead a normal life like other people. Almost a year later, I finally secured a full-time job regaining my independence. But the journey wasn't without its challenges. Life is at times a roller coaster, but the right has for me been mostly steady. To be truthful and transparent, I've had a somewhat tumultuous relationship with medical treatment, exploring both it and the alternatives, and taking the view now that it's something I must live with. So, with hope and positivity, I still reside in Perth, Western Australia, having lived here for two decades. Love found its way into my life, leading to a lasting marriage and a beautiful son who is now 14 years old. My wife and I own our home, we've achieved a degree of financial stability, and I work full-time as a professional engineering miner. Autonomy shapes the way I live. It began with my wife's suggestion of keeping a diary, offering a canvas to reflect on past events and daily life. Within a few years, this became a more profound pursuit in the form of memoir writing. And I found an editor, started my own publishing company, and have released two memoirs and a semi-autobiographical fiction title. And additionally, I took on public speaking as a mental health advocate in the community. So from personal experience, I've discovered my own five keys to recovery and mental well-being. And these are love, work, lifestyle, responsibility, and professional advice. And these, I believe, these keys can be relevant to others in their struggles. To conclude, sadly, my mum passed away a couple of years ago, but dad, now 81, remains strong. I imagine mum watching from above, resting peacefully and perhaps proud of the life I've built. It's not a disaster. My life is, in fact, fulfilling, meaningful, and abundant with purpose and daily gratitude. And that's it. Remember to have hope. And thank you for listening.

SPEAKER_03 21:19

Thank you. And you timed that beautifully. So I am now going to read. I'm sure everybody has lots of questions, but we're saving them. I'm going to read a story from um in Listener Call. Her name is Corianne, and she has asked, she said it would be too difficult to tell the story. So she sent an essay. And I'm going to time myself. Hopefully, I'll read quickly. Everything started when I noticed my son's behavior changing very sporadically. At first, I thought his anger, depression, and other odd behaviors were from using different drugs because I had heard of different drugs causing things like hallucinations. I Had no idea it was schizophrenia. I had only heard of schizophrenia, thought of it as a scary illness that made people kill people. I had no idea about the different types and the different symptoms. My son started to have violent hallucinations and told us what he was seeing out loud. He would talk to dead people, talk about the devil and other similar things. And it was scary for both me and my two young boys. When I tried to bring it up to him, it made him angry and things got violent nearly. He couldn't see what was wrong, thought I was making it up. It got to the point that I had to get him out of the house. He started to live with his father, but his father had the same concerns about our son's odd behavior. His father wanted our son to get medical attention, so he took him to the hospital emergency room. Son was over 18, so neither of us were told what he was diagnosed with, only for him to not smoke marijuana, to not worsen his condition. We were never told what the condition was. My son started living from couch to couch, and his behavior and symptoms only got worse. It all came to a head one night when my son broke into my apartment while my kids and I were sleeping. I was lucky enough to get my two young sons with me and lock the door before my son got in. He began kicking at my door, saying things that weren't making any sense. So I had to call the police. I had no idea it was his mental illness. I thought it was a bad reaction to some drugs. My son was arrested. I thought he'd get medical attention due to his behavior, but instead he was brought into jail. My son, in psychosis, was kept in solitary confinement for months. It was while he was in jail that he was finally diagnosed with schizophrenia. That was the hardest thing to hear. I still didn't know much about it. So to better understand his condition, I took a class with Nami that helped me understand. While in jail, my son was getting medication that made him like a zombie, barely able to function. It was torture to see him so heavily medicated, knowing the severe mental illness he was dealing with. It was torture to see my son in those conditions every week, crying and pleading to come home. And I was trying everything in my power to get in contact with attorneys to help. It felt like I wasn't getting anywhere. We went through this for eight months. When I saw him like that, it felt like neither of us were going to make it. It's so hard to see your child like that and not be able to help them. It's one of the most heart-wrenching feelings I've ever felt as a parent. Finally, relief when I was told he'd be in the county psychiatric hospital. First few months were more of the same, and it was hard. Despite that, I was grateful I could physically be with my son and hold him. At last, after a few months, we saw progress. I felt very connected with the medical staff. They were nice, keeping me updated. As time went on, I saw more and more improvement in my son's behavior. As he was in the hospital for a year, by the end of this day, he looked healthier and his behaviors seemed much more stable than they were in the beginning. This was a huge relief. He was able finally to get proper treatment and proper medication. That was what he needed, not jail. No one with mental illness should be in jail. I see now, though, that that was part of his journey and he would never have gotten his diagnosis or gotten in the hospital if not for jail. Well, now he's out of the hospital. He's in a halfway house. I can really see the progress. I believe the mandated services that my son is getting have definitely, he could never have done any of this on his own. Now he's able to visit every weekend. It's starting to feel like I have my son back. In the beginning, I thought I would never have him back. He's not exactly the same as he was before, but I didn't expect it to feel almost like it never happened. When my son is around and we're together, it feels like none of this ever happened. I'm not afraid. My kids are not afraid. I can leave my son alone with his brothers. We feel safe. I never thought it would be like this again. I never expected the positive turnout. It doesn't mean we won't have bumps in the road, but I never thought it would get to this point. I've been waiting to share my son's story for so long because in the beginning, I felt like I was the only one going through this heartbreak. In advocating for my son, I've learned so much, not only about his illness, but about other families going through the same thing. I don't feel alone anymore. I feel that the more we advocate for people with schizophrenia, the more their suffering is not in vain. Boy, she wrote a five-minute story. Look at that. Thank you very much, Corianne, for your story. Melanie, we'd love to hear from you next.

SPEAKER_02 26:44

Hi, thanks for having me. You all were a lifeline during a very desperate time. I was so happy to find you. So going back some years, my daughter, who's now 25, had a history of um severe anxiety and panic attacks. School was always difficult. In her younger years, she was diagnosed with dyslexia and a low IQ. And you know, as a mom, you're like, yeah, not my kid. She was really sensitive, imaginative, creative child. She had a special love and connection with animals, and she always said she liked them better than people. So fast forward to 2021, she was in community college. She did amazingly well despite the learning disability. She was graduating with honors. She had three different associate degrees she was getting. She was going to a state college, she had a position as a research assistant in biology waiting for her. Her dad and I were like, we're living the dream. Our kid's doing great. She's going off to school. When we would travel, she'd be home, take care of the house, take care of the animals. And we're thought, okay, this is great. She was doing so well that her primary tapered her off of Zoloft, which was used for her anxiety. And, you know, they say hindsight's 2020. I can look back, I can put the pieces together. That's when things started. A myriad of health issues, one after another, abdominal pain, disordered eating, fear of eating, anxiety, fixation on anything about the body. She was hospitalized for dehydration. She wasn't eating. The gallbladder was blamed. She had surgery for the gallbladder. And I always said she just didn't wake up the same. Um, to me, it felt sudden, but again, looking back, I think I can see all the pieces. So she started going to the ER regularly for suicidal ideation. She was restarted on Zoloft, and um the roller coaster of medications began. I tell her, and I apologize because I didn't get it. I thought I could snap her out of it. I thought I could just get her to see things a different way and find the right this or that, and she would just get back to the way she was. But she was demonstrating unusual behaviors, the easiest thing became the hardest thing. There were endless ER visits and finally an admission. Um, she didn't want to leave the hospital, she didn't want to come home. And I think so many can relate to the confusion, the heartache, the days of crying, and you just feel so helpless and hopeless. And you don't know unless you know. If you've been through it, you know. Um, we were blocked by HIPAA, and she was 23 at that point, and um that was a big barrier. And finally, when she would talk to me, she agreed to sign a form so that I could talk to the medical team. And we're in kind of a smaller town in Oregon, there just isn't enough help. And we were told repeatedly that she was atypical and they didn't know what was wrong with her. I finally found a place in Texas that was touted to be the best in the nation because we wanted answers. I work in the medical field, I'm like, we're gonna figure out what's wrong and we're gonna fix this. You know, we'll just get the right medicine and this is gonna get better. We took out a second mortgage, we were really lucky we could do that, got her to Texas. She was there for several months, and they said it appeared she had a schizoaffective disorder, brought her home, and she was just continuously in psychosis despite every medication that was tried. She said the voices told her to hurt herself and others, including me and her dad. She was living in fear, she ran away from home, she didn't want to hurt us. I'm really lucky in that she knows her brain is sick, she knows she has an illness and she wants to feel better. But you're so helpless because I couldn't stop it. And she couldn't either. Um, by then I'd done a lot of reading. I tried to understand more. There was another lengthy hospitalization. I found consultants who could say they would help me find residential placements. I spoke to countless facilities. These don't take insurance. These consultants want you to pay $10,000 to $15,000 for them to just tell you where your child could go. Then I found three moms in the trenches. I heard podcasts of hope. I heard about success. I heard about Dr. Rob Laitman and Team Daniel running for recovery. I learned about clozapine and I begged the doctor to start it, and they did. And I could write another book on what we went through to get clozapine. That's a whole nother story.

SPEAKER_03 31:42

And you only have 30 seconds.

SPEAKER_02 31:44

So okay. I'll say that I'm really lucky. I am a medical provider. I got certified so I could get my daughter what she needed. I talked to Dr. Layteman and he helped me. He has been counsel. He's like, you're doing it, you're on your own, but he's counsel. We've gone through so much to get that and to get her where she is. A year now, she smiles and laughs. She expresses love. She wants to start school again. The positive symptoms aren't gone, but we're managing. The negative symptoms are slow to leave, but she looks forward to a future and she sees herself in it. And I tell her she's the bravest person I know. And I'm grateful every day. Um, our lives are changed forever, but I do see a future, and I know I'm really lucky, but it's it's a long journey, and you have to be so patient. There's no tough love. You cannot snap people out of this.

SPEAKER_03 32:39

Thank you so much, Beth. Thank you. Hi.

SPEAKER_04 32:42

Hi, I'm Beth. And I live on a remote island in Lake Michigan. Services here are pretty limited. My son will had his first psychotic break in 2010, just before his 21st birthday. Before that, he was valedictorian of high school, very social, very active, athletic, artistic, a nature lover. He was a great kid and um had lots of friends. After the psychotic break, all the friends disappeared. And I don't blame them, they got scared. They didn't know what to do and how to handle it. Over the years, my son ended up going into eight different hospitals in the next 13 years. And recently, he's been living in a group home about five hours away. But some of the more traumatic events we've had, he was at one time arrested for domestic violence, which wasn't true, but the police misunderstood and got um, he ran away into the woods and they got search dogs and chased him down, handcuffed him, put him on a flight and put him in jail. And it took me going to prosecutors and lawyers and judges to get him out of jail and into the hospital because he was suicidal. Another event, he attempted suicide, was flown off the island in the R. They finally found a bed, you know, the long wait. And um he was taken away in the ambulance. And I said, Where is he going? And they wouldn't tell me because of HIPAA. After that, I actively started working on full guardianship so that I could get the information. And that's really opened the door. And I think that's something everybody should do for adult children. Now he is, let's see, I wrote things down. His last hospitalization was in 2019. And at that time, I ended up, as soon as he was discharged, he was moved to crisis residential, which was somewhat usually the step-down program that was after hospitals. But this time he believes that he had re-injured a snowboarding accident on his knee. And I got him home from the crisis residential, but I got a call the next day and had to leave because um my mother was in hospice and I was going to help take care of her before she died. So I was gone for six weeks. And during that six weeks, because of his illness, it became a medical physical problem, but also a psychological problem where they both intertwined. And he ended up racing his knee while I was gone, moving to crutches, and eventually stopped walking. And that was in 2019, and he still is not walking. He believes he does have auditory um delusions and voices. One of he has one primary one who actually used to be a real person, and he's read all this person's books. But he believes that his voice is going to magically cure the knee and he'll start to walk. He believes that he has some digestive issues, he has sleep issues, and he thinks all these will be cured and by magic, and that the schizophrenia will be cured. In the meantime, as my son was growing up, my husband was quite ill. He had a failing liver and eventually got put on the transplant list and was quite sick throughout my child, my son's most of his life. Um, I think he was six years old when he first was diagnosed, when my husband was diagnosed. I have two children. My older son has been incredibly supportive and helpful with his brother, and they have a really close relationship. But I think some of the trauma that my younger son has seen, I don't know, may have helped, may have participated in some of his behaviors. But also we did find out genetically that there is some on both sides of our family mental health issues. At this point, my husband in August of, well, actually in June of 2021, um, an orthopedic doctor spoke with me uh privately and said I had to get him some care immediately because he was researching my son's problem. And he said eventually his knees are going to lock permanently and he'll never be able to bend them. That his thigh and calf muscles in both legs will atrophy and eventually the blood flow will stop flowing and he'll die. And I was like, it scared me to death. And this was two years that we had already been waiting, almost three years, that he had not been walking. So I knew that we had to take action. Okay. So we ended up, um, my husband got his transplant and we ended up moving our son down there with us and found a great physical therapist who is um behavioral and medical, and a family practitioner who's behavioral and medical. So they've been fantastic in supporting him. He's been making improvements, but he doesn't believe any of it's happening. He doesn't see any improvement because he's waiting for his voices to cure him. So I've been trying to get the doctors to think about clozapine, and they're refusing. Um, he had it once in one of the hospitals and he had reactions to it. Um, but my older son's getting married in two weeks, and he asked his younger brother to be the best man. So my son is trying really hard to try to walk with a cane, at least, so he can walk down the aisle for his brother. And his other meds are great and he's doing well. But I want to say one more thing really quickly, and I want to thank Greg. Greg, thank you. You gave me so much hope. Thank you. Thank you so much, Charla.

SPEAKER_07 38:26

I'm gonna be extremely brief.

SPEAKER_03 38:29

You're gonna you're gonna be joining us uh for our next episode to tell more of your story, but we'd love to hear a bit of it.

SPEAKER_07 38:36

Yes, ma'am. I think very similar to a lot of the stories I'm hearing, you know, my daughter, she had a pretty good childhood. You know, we did divorce when she was fairly young. She was about five years old. And my ex-husband, you know, we were just too young when we got married. We had no idea what we're getting into. And I didn't know anything about his medical history. That's just not something that people really discuss. But he had decided that he wanted nothing further to do with my daughter when she was about 11. And this coincided with a major traumatic brain injury that she incurred. She was riding her bicycle on a sidewalk and a drunk driver came up and hit her and took off. Subsequently, she was diagnosed with a TBI. Also, she had um displaced hips, you know, lots of bruises and all of that. But, you know, after all the physical ailments were repaired, the brain is the thing that really set us back. Her father really, I mean, he was on the fence before then, but after this happened, he was done. He wanted nothing to do with her because she was 180-degree turnaround. She lost most of her friends. I lost most of my friends because she was so profoundly different, you know, because before this happened, she was a natural-born athlete. She was very outgoing, she had dyslexia. But other than that, she didn't have any real medical problems. And then after this happened, everything was upside down. You know, I was a single mom for 16 years, and I did everything I could to try to put her back together again because that's what we do as moms, you know. Um, someone recommend try EMDR. We were there. She did vision therapy, she did anything. I could have stood that kid up in a corner, I would have tried it. But when she hit her teenage years, oh God help me. One of the parts of her brain that was damaged is your impulse control. And so impulsivity came in. We knew because the dyslexia, she had gotten tested for that before the accident. So we were able, we had a baseline that most parents never had. So I knew exactly what she had lost from that accident. She lost five years of math and reading. We ended up going back to one plus one. She had to have an IEP that was a lot of work to get worked out. And long story short, you know, it's so easy to get focused on getting them diagnosed and trying to jump down that rabbit hole to try to figure out what's wrong. And you get caught up. I mean, there's so much time I look back and I wish I would have, I know, maybe worried a little less about that, you know, and really enjoyed the moments with her. You know, um, when she when she turned 18, she ended up um, I mean, she gave birth to my first grandson. She has three children, two of which I'm raising now. Um, one, the oldest is with family in Colorado. And it didn't get easier. Um, in 2019, uh, when she was with baby daddy and trying to take care of the kids, you know, he tried to kill her in an act of domestic violence. He had wrapped an extension cord around her throat. So it was really traumatic. After that, she was just not the same. That's at the point she came to my husband and I said, Hey, can you take care of the kids? I think I'm suicidal. You know, I've always worked hard to have that open relationship where she can come to me, I'll drop everything, no judgment, and be there for her. And thank God. And so we did that, but in it was just one hospital say after another, after another, and nothing really seemed to help. We've dealt with three years of psychosis. In 2021, she had three whole weeks that she wasn't hospitalized, incarcerated, or missing. In 2022, we have five whole weeks. And then this year, I'm happy to report we're at three months. I'm still working on trying to find something for her, but she's not been in jail, she's not inpatient, and yeah, and she's not missing. All right, and so it does get better, but what better and what happiness and everything looks for everybody is different.

SPEAKER_03 42:51

Thank you so much. In the interest of time, Mimi and I are just going to tell a one-minute version of our stories, just so that we're in here, and then I'm gonna talk a bit about the common themes we've heard and ask each of you how you take care of yourself in all of this. So, Mimi, just a shortened version just so we can tell a bit of our stories. Wow, one minute. I'll give you two, two minute, two-minute version.

SPEAKER_01 43:22

Okay, so um Nick was a kid who wasn't typical in terms of being problematic when he was young. He was kind of like the perfect kid. He was the golden boy and very, very, very talented um artist and did well in school, and had a million friends and had a big heart, which he still has. And um it all started, you know, quite typically in his teenage years, during which time I like to say, we don't know what's going on, because if you were To make a list of red flags for serious mental illness and a list of normal teenage behavior, you'd have virtually the same list. They all act crazy, they're all impulsive and confrontational and difficult and irrational. So we went through a lot of years of thinking, well, he's just like all the other kids and he'll snap out of it. But he didn't. And it started getting worse as the other kids seemed to be moving out of it. And eventually, as things um deteriorated, we took him to a doctor. There was a suicide attempt. We took him to a doctor, he started seeing different therapists, and we went through years of that diagnosis merry-go-round. And you know, he was diagnosed with anxiety and diagnosed with depression and then bipolar and then eventually schizophrenia and schizophrenic, and it kind of bounces back and forth between the two. One thing I'd like to say is although I paint this picture of when he was very young, of him being this golden boy, there was something that ran through his whole childhood that I can identify now that I think was a warning sign. Not that I could have done anything about it in terms of the schizophrenia at the time, but I think it's something that parents should be aware of. He had a lot of anxiety, you know, he chewed his nails down to the nub. He he he had a lot of anxiety. And I was kind of a walk-it off kind of a mom. And so that was something that I didn't take as seriously as I should have. And I do regret that because I think maybe we could have figured out something was going on sooner. But so we got him diagnosed and um went through the usual hell of every medication in the world and doctors and providers and everything. And basically, for most of his young adult life, he was a zombie. You know, they medicated him to the point where he wasn't a problem to society and called that a success. And basically, he sat in a dark room, got morbidly obese, lost all his friends, didn't do anything for a good part of his 20s. And eventually we found our way to Dr. Leitman and Clozepine, which really did change everything. I don't think that clozapine is going to be the silver bullet for everybody, but it is a silver bullet for a lot. And um, for Nick, it was, and things have gotten much better since then, and he's kind of back in the world with us. He is anasygnosia is gone. We're having a tough time dealing with the negative symptoms and getting him back, you know, having a productive life. But um, I'm very grateful for where he is now, and um that's really there's the nutshell.

SPEAKER_03 47:05

I kept giving you extra minutes because it's important. No, and no, you know, it's look, we're here, we started this podcast because we we didn't want people to feel so alone, and we wanted to do something with our pain and our books. And if you want to know more about any of us, my book has been behind his voices, it's about 10 years old. But if you want an updated version, there's a um an audiobook. Mindy's is fix what you can. Mimi's is he came in with it with Nick's self-portrait on the cover. But it it echoes so much of what we heard today. I'm really gonna just tell a very brief version because it echoes so much of what we heard from all of you today. I wasn't sure. Teenage years got a little weird, he had some anxiety because my husband abandoned the family. It's like it's like everybody's story kind of rolled into one. Dropped out of high school, sent him to a troubled teen program. He got better, but I always say it's was kind of like Helen Keller in the cabin with with Annie and Miracle Worker before she got it, like before she put her hand under the faucet and understood that words meant something. She was obeying, but not there. And that's how he was. Lived with us for a while, medication roulette. When is he going to be sick enough that I can put him in the hospital? Five hospitalizations. My book came out. He started to get better in a group home and on clausural. And he earned college credits and he stopped taking his meds and he went back in the hospital. It was back and forth. He lived with us for nine years after that. During those nine years, he we made sure he stayed on his meds and he got off Social Security and worked full time and was back in the family, and it wasn't perfect, but pot was an ongoing issue. So COVID came, he lost his job because he was working in restaurants back in the hospital. You know the story if you've been listening to the podcast. And back in group homes, he was doing okay. He's not on clausural anymore. He doesn't want it. He's on howdol, it's not the same. His teeth are falling out of his mouth. I don't know if that's the howldol, but he's too scared to get them filled. He tried his hardest at a retail job. He walked three and a half miles to get there, but his behavior is not the same on the howldol. So they took him off the floor and they put him with the trucks. And but he kept showing up to work. Broke my heart that they eventually fired him because he was weird. Right now he's found friends and you know, he's actively smoking pot again and drinking. This is new and lying to me. And I think he may be stealing, and this is new information. And I'm kind of reeling. So um, it's that step in or let go. So this is where we all are. I want to share what the stories, what we heard. First of all, treatment works when it works. The right treatment works. Many of us have spent a lot of money, many of us have lived in fear, many of us have been lucky enough to have good periods with our loved ones and appreciate it, or with ourselves, our loved ones, or in Greg's case, he resisted treatment but found that it works when it's the right one. We faced HIPAA barriers, we have faced loved ones in jail, in and out. We have faced not knowing soon enough. I heard a lot of, oh, we just didn't know, we just didn't know. We have faced suicides. We have been on the roller coaster more times than we care to think about. Many of our loved ones had second hits, illnesses, accidents, divorce, and many of them refuse to get help, and we wish we could convince them. So I'm just gonna say that everyone here is a warrior, uh a brave warrior, and I'd like to ask you, you can put it in the chat and I'll read it, or you can unmute and tell us. But I'd like to know what you do to find joy and take care of yourself. What do you do to take care of you? Lynn, you put your camera on, so I assume you have something to say. And if and anyone who doesn't want to put their camera on, you can just put it in the chat and I'll read it out loud. Okay, Lynn.

SPEAKER_06 51:34

Yeah, well, what do I do to take care of myself? Well, I had many, many years and decades of not taking care of myself, so I know what that looks like, and that wasn't working for me. And um, if you want to burn out and you know, just not be able to help anybody, including yourself, and just continue to not take care of yourself. But so so I I'm pretty much very, very, very selfish about taking care of myself because I know that that's how I can take care of everyone else, including myself. So I am a nature more than anything. I have to be outside every day as much as I can, and that is healing for me. Um, family members and friends, that's very few of those, but very close and very supportive and very safe people I talk to. Also, my faith is very strong, and that is something that I can lean on 100% of the time. Thank you. And swimming, swimming all the time. Love to swim in the ocean, and swimming.

SPEAKER_03 52:34

I'm putting these, I'm putting these all in the chat as you say them.

SPEAKER_06 52:37

So oh, an inside schizophrenia podcast. Oh, that has been my most recent, wonderful. Oh, I love that. Listening to first person, yes.

SPEAKER_03 52:48

That's a great one. Okay, thank you, Greg. Mindy says walk, talk with friends, family, anybody else? Uh then Sharla and then Beth.

SPEAKER_07 52:57

I have been very involved in Nami for about the last eight years. I'm one of their family-to-family teachers and also facilitator. And just being there for others kind of refills my cup a little bit because you don't feel so alone. There's a couple things that I found that are really helpful when I'm pressed for time. If you go on too long with this much pain, you'll become bitter. And I'm just as guilty as everybody else. And so, what I found that works for me is I will give myself permission to cry and let some of that pain go. And even if it's just to a song, you know, everybody can find three minutes in their day, but let some of the pain go. And also, you know, just researching and getting involved and enjoying what good you do have and looking for the good and choosing happiness.

SPEAKER_03 53:48

Thank you. I'm furiously writing in the chat, and I will put all these in the show notes as well.

SPEAKER_04 53:53

Beth, I've recently retired and I found a new job. I'm a voiceover artist, like you, Randy, but it's for a children's publishing company and I love it. And so it gets me outside of trauma, you know, all the daily stuff. Also, I have a group of very, very close friends that take me with them on vacation. We go for female vacations just for a night or two or a weekend, but we get away. And because I do a lot of caregiving for my husband and my son, getting away really helps.

SPEAKER_03 54:25

And Greg says what helps him is antipsychotic drugs, family and friends, and disclosure, talking with people. Lynn has added, being an advocate. Anyone else have anything to add? These are all really wonderful suggestions, Melanie.

SPEAKER_02 54:41

Um, I would say for myself, I get up extra early so I can go out and take a walk and just put on a podcast like Three Moms in the Trenches, or listen to a book on audiobooks and just to escape. Um, I celebrate the small because it is a big deal. Every little step, every little moment is big. And just sitting with my daughter on the back deck and watching the birds, that's that's the moment. So I guess that's a lot of mindfulness and breathing and talking to friends, connecting with people like people in this group, in the Team Daniel group, just having that connection with other people who really know where you've been helps immensely. You're not alone. I think that's the biggest thing. You are not alone.

SPEAKER_01 55:28

You know, I think that um the self-care can take a lot of different directions. I think the the most important component to that is stems from that mindfulness, from giving yourself permission to have joy. Because this awful thing has happened to your child. I think we as mothers tend to lean into this idea of I'll never smile again, you know, because if he's not happy or if he's not okay, I can't be okay. And I really it took me a while in my uh path with all of this, years and years and years. But I did reach a point where I said, you know, it doesn't help Nick or anybody else if I have no joy. And me having joy doesn't hurt Nick. So why would I not allow myself that? And I have a very, very joyful life, lots of it. I mean, I have a lot of grief and a lot of pain, but you don't have to give up joy just because you have grief, and that would be my advice to everybody is just find the thing that you love, find the thing that gives you respite or gives you relief or makes you smile, and do it. You're not hurting anybody, and you're making yourself stronger. And even if you're not making yourself stronger, even if you're not, you know, fulfilling this equation of, well, if I take care of myself, then I can take care of everybody else, which is what we all say about self-care. It's like, screw that. You get to have times, you get to have happiness, even if you can't fix it, even if you can't help anybody else, you're not hurting them by having it. So don't be stingy with yourself. Let yourself have joy.

SPEAKER_03 57:17

That is a perfect way to end this podcast. Uh, Lynn adds, lots of joy is the best. And Charla has added meditation for her and recommends Dr. Jeffrey Thompson has great CDs with brain whales to help calm the rough waters. For me, I play, I do theater. Even last night, I got some really bad news about my son, and I allowed myself the pain. I got a big hug from my husband. My grandkids are like, why is he hugging her so tight? My daughter said, This is a hug. You put your love into someone by putting your arms around them. And then I absorbed what I needed to absorb, and then I watched Star Trek Discovery and enjoyed it on TV and read a book. And so I just want to, yeah, lots of joy is the best. That's a great way to end this podcast. So I thank you again so much, every single one of you, for sharing your story with us. I know you that your stories are going to help a lot of people to not feel so alone. And we are human beings doing our best, and it all boils down to love. So thank you so much for being here today and sharing your stories and for your great love. Thank you. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.