Schizophrenia in the Family. How do we cope? How can we help? We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye, Mindy Greiling, Miriam Feldman...and guests.
Rebecca Lyn Phillips, 43, is a published author, speaker, and mental health advocate. She regularly shares her story of trial and recovery to help others who need hope. She wants to shine a light on a dark subject and show that life can happen again.
Episode 9: Rebecca Lyn Phillips, Part One
3 Mom Updates:
When SMI peer community can be a problem
Having a “mundane” problem put in perspective
Periods of calm
Rebecca’s story:
early life - filled with love, or filled with trauma? (the answer: love)
"Dark Days" how psychosis started for Rebecca, what it felt like " I was tormented by intrusive thoughts and beliefs that hurt me." -- what was that like?
Spirituality and psychosis
“Voices” or “intrusive thoughts”?
First and subsequent hospitalizations and medications: what was that like?
Why go off your meds if they seem to help?
Did you tell friends and other family members about what you were going through?
Lowest point, and turning point: when things turned around - what clicked? the right doctor? the right medication? Your own awareness? The right words at the right time?
“Living with Schizophrenia” Documentary: https://youtu.be/48YJMOcykvc
Quotes:
“When I was 17, I started sleeping in my closet...it was like I was trying to escape my mind” - Rebecca
“When I was 18, I was sleeping in the bathroom in the art building because I thought I was in danger.” - Rebecca
“I was so scared that I’d have to be in a group home for the rest of my life...and I’d die there” - Rebecca
“The psychiatrist sat across from me and he said ‘I know your family member can accept your illness, but can you accept your illness?’...and something in my psyche shifted..and I thought ‘I actually have a choice here.’” - Rebecca
“I accept (and I don’t always do it with joy) -I accept that I have an illness. It’s a daily thing, and it’s taken years and years of struggle.” -Rebecca
“The voices - the thoughts - were saying to me ‘flush all your medication down the toilet’” - Rebecca
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. Today we're gonna focus on the personal again. For the last few episodes, we've been talking about issues, and that's very important too, but it only means something if we see how it is for a person and for their family. So I am so excited to welcome to the podcast Rebecca Lynn Phillips. This is mental health recovery, a personal story. Rebecca, you and I met nine years ago and in Chicago, we were just reminiscing and we've been Facebook friends ever since. And Rebecca is a published author and a speaker and a mental health advocate. And she's here to do what she does, which is to share her story of recovery and what happened before recovery to help others who need hope, maybe shine a light on a dark subject and show that life can happen again. So, Rebecca, you've met me, but you haven't met Mimi or Mindy. So I thought we usually just start each episode with sort of a 60-second update, and we'll sort of add to that just a bit about us so that you know us before we start grilling you about your life.
So you know me, I'm Randy, and I wrote Ben Behind His Voices. My son is uh who I call Ben for these purposes. He was doing really, really well, although without insight into his illness. So up until COVID, he was living with us after uh about a decade in a group home and doing quite well, working, worked his way up to working full-time as a restaurant server and was managing quite well. He was like 65% back, and we were thrilled. But COVID hit and he lost his job and everything fell. So he has just recently been uh released from his ninth hospitalization. This one was five and a half months long. And he is back uh in treatment reluctantly and not on the medication that worked so well last time. Right now he's in a group home. And my current concern is, and maybe we can talk about this later, I am thrilled that he's back in a community, that he's not living in his childhood home and comparing his life to his high school friends. I'm thrilled that he has a community. And frankly, it's easier for me to step back a bit. However, when I went to see him this week, I noticed that he's made some friends who are trying to talk him out of the fact that he has a mental illness and that it's not about mental illness, it's about spirituality. And so when I hear that, it scares me. And so that's kind of where we are. I I am not in charge of him. The staff is there, and they will certainly listen to my concerns. But on the one hand, as a mom, I'm thrilled that he made a friend. On the other hand, and we've talked about this in past episodes, and Rebecca has listened to some of our past episodes. We've talked about the peer recovery movement and how for some it's great, and for some maybe not so great. And maybe we can get to that after we hear your story. But that's my that's my primary concern right now. What if somebody tries to talk him out of taking his meds? But so far, so good. That's where we are. Mindy, you want to go?
SPEAKER_04
Sure. I know that fear because Jim, being a vulnerable adult, has had a, I call it a kind of a fake chiropractor who did once talk him out of all his meds. And Jim thought that was a good idea. So I know that people with um schizophrenia and so forth can be vulnerable when they're not, especially when they're not doing as well. But for us here in Minnesota, we're thrilled because it was made it up to 60 degrees today, and that is a heard of heat wave in early March in Minnesota. So we're really happy. And also, we have a first world problem, is all I can really talk about with Jim today. And that is he lost his phone this week. He's lost many phones, had many phones stolen. And usually that was not even worth mentioning compared to the other things we were going through and he was going through. But because he's doing well for the past um year and a half, losing a phone was a big thing then because he's couldn't he missed his psychiatrist's appointment that he had on his calendar, and he had to cancel his catty waiver worker because he can't let her into his apartment if she can't call him when she gets there, and she comes anytime all day long. She often doesn't set a time, and um uh so he he's been at adrift, but hopefully a new phone will be coming tomorrow. But that's a very small problem in the grand scheme of the talk.
SPEAKER_03
Nice, nice to have a mundane problem. Yes, absolutely. Okay, and Mimi, if you can introduce yourself and hi, I'm Mimi Miriam Feldman.
SPEAKER_02
I um I'm the mother of a 35-year-old son with schizophrenia, and I've also written a book called He Came In With It, which is a memoir of the 10-year period when he first got sick and how it affected our whole family. And right now he's um he's doing well, you know. We've sort of suspended, we're in the process of shifting his medication to colozapine, but we've suspended any uh shifts in the in the dosages right now because I'm in Los Angeles working, and um I'm enjoying the sunshine. Boy, I gotta tell you. And he's doing very well. He he seems quite engaged and doing well right now. So I'm pleased.
So that's great. We are here to, and I know Rebecca, you talk a lot, and I know you've had your ups and downs as well. This is not a Cinderella story necessarily, and I know you'll be truthful with us. I was sharing with you before we we started the show that I know Mindy's son talks to her about his voices and what he hears and what the illness is like for him. I think, Mimi, it's fair to say that you and I just know what we know from observing. And so to have the chance to really talk to you is exciting. And now this is all about you. So let's just start with you're 46, you're an author. I mean, there's a lot we're gonna get to, and I know, and you do you have a diagnosis? It's schizophrenia, paranoid schizophrenia. Okay, thank you. And so let's just start with with your early life. Can you tell just I we just want to hear your story? Like what was your childhood like before the diagnosis? And and then we'll get to your dark days. But let's just start at the beginning. How did your life start out?
SPEAKER_01
Well, I had a very loving family. Um, my father was a college professor, he was really smart, um, had a PhD in communications, and and um my mom growing up um had a medical transcription business at home um so she could stay at home with me and my younger sister, who's seven years younger. I've always been close to my family, to my mom and dad and my sister. Um I moved moved around quite a bit. Um, I was actually born in North Dakota and uh lived in Oklahoma, Kentucky, Georgia, and now Kansas, where I've lived since I was in the sixth grade. But um I I feel like when I look back on my childhood, I see a real bond emotionally and spiritually. My family was very spiritual and religious and um in church, going to church was kind of the big thing to do. And my my grandpa, my mom's dad was a minister, and kind of growing up, we just went to school, we went to church, we did chores, um, you know, I played with friends. Um, it was normal, so to speak, in many ways. But I think when we moved, I live in Topeka and when we capital city of Kansas, and when we moved here, I had left behind my very best friend, Katie Ramsey in Shawnee, Oklahoma, where we had lived before. And that was really hard for me. And that was the first time in my childhood, I was about 11 or 12, that I started feeling really sad. And I didn't, it was kind of this new feeling of feeling really connected to my emotional pain. And it was real difficult to explain to my mom and dad, but um, that was the first time I really felt really sad. And then later on in my teenage year, and um I went to a private school in Topeka from sixth grade to twelfth grade, and like I said, you know, before going to church and going to school or the normal thing, but looking good and acting good and behaving. And my dad was a wonderful provider and wonderful man, but he was he would at times be hard to please. And I wanted to make my mom and dad happy, and I had this real drive to perform and to do my best. And actually, um, well, I had a one of the things I did was I babysat. I had these wonderful families that I babysat for, and um, I did that in my teenage years, and I actually,
when I was 15, um, my dad had written some academic books. He had done, I'm sure you all remember the student protest movement of the 60s, but he did a book on it and got published. It's in universities all over, but I'd always looked up to my dad for his writing, and so I decided that I wanted to write a book. And I wrote several pages and it was prayers for teenage girls, and it was just kind of my crying out to God or whatever for with these feelings that I had, because I went to this bookstore in Topeka, and I thought, surely they'll have a book for teenage girls about issues that teenage girls go through, but I never found it. So I thought these adults don't know what they're talking about, so I'm going to write one. So how old were you when you wrote the book? I was 15 when I started it.
SPEAKER_03
Wow. I saw it online and I didn't know what it was. What was the name of it? Heart to heart. Heart to heart.
SPEAKER_01
It's a devotional, and you know, so much of it it's kind of outdated in what I think about, you know, some of my thoughts. And but I I went to my dad's study, he had an office downstairs, and I didn't tell my parents what I was doing, but I looked at my um dad's bookshelf and got the writer's market. Remember the book, the writer's market with all the lists of publishers. So I found these five publishers and sent it to him, sent it to the publishers. And the fifth one, Thomas Nelson in Nashville, accepted it. But um, so that was kind of a big thing for a teenager, you know, to be right.
SPEAKER_03
There you were, this like really accomplished, maybe slightly people-pleasing, a loving family. And then what happened?
Well, and then I I just was real hard on myself. I I um I had to get good grades. I and it doesn't mean I didn't enjoy some of it. I mean, and didn't enjoy getting an A or someone saying this is a good essay or this is a good or you did a good job babysitting, or you did a good, I was in theater and in high school, and I loved to have affirmation, but I I think I started getting more introspective at age 17, 16, 17. And I think although I will say that when I was first diagnosed with schizophrenia, it was schizoaffective disorder, but it became paranoid schizophrenia. But I looking back on my high school years, I can see the paranoia because I would start to sleep in my closet because noises and it wasn't like my family was noisy, I don't remember that, but I just it was like I was trying to escape my mind. My mind had all these thoughts in it, and I also thought my dad was out to get me, which he would get mad at me sometimes, but it wasn't like he was hurting, you know, it wasn't like this horrible home situation, but it's just that I I had these thoughts of self-harm and getting mad at myself, and I don't really know where it came from. I didn't have an addiction, I never had, of course, growing up in a strict, you know, spiritual home. We didn't, there was no drinking or smoking or, you know, but I really don't know exactly when it started, maybe 16 or 17. And I went to my mom, and um, this lady, uh family friend who was a counselor, had been seeing me for counseling without charging us or anything. She was just being a family friend and listening to me. And I told my mom and dad, or I told my mom that I thought I needed to be hospitalized. I I don't know where that came from.
SPEAKER_03
I I don't I don't I don't know why I did that really. Well, what was I mean, you know, so you're like up until about a minute ago, you sounded like any sort of high achieving type A personality teen. And then suddenly you went to, I'm hiding in my closet. I thought my dad was out to get me. I mean, did you hear voices? Was there anything going on that you're aware of now looking back?
SPEAKER_01
That well, you know, I've always been, you know, my spirituality was always a part of me. And what you were saying earlier about your son's friends saying it's all spiritual. I think for a lot of people with schizophrenia, the spiritual part of it is a real big part of what they go through, of what we go through, because it was kind of
these spiritual feelings of God is mad at me, and just this heaviness of like this almost like this oppression type feeling, like like this, like I was not pleased, I wasn't being an obedient child or something, and I wasn't pleasing God, or it was almost like this obsession with spirituality, even though, and even now, jumping back to now, I there are times when maybe I think I hear the voice of God and I'm like, okay, maybe that's not God directing me to get in my car and leave my mom's house and go across a river or whatever, you know. But it was almost a controlling feeling, like like the voices or and I didn't see it as voices then. And even now it's hard for me to say I have voices. I when I've been interviewed in the past, I've said I have intrusive thoughts because that's what my friend Cassandra calls them intrusive thoughts. And um, it's easier for me to deal with because when I think I have voices, I'm like, oh, that's what all the that's what all the other people with schizophrenia have. They have voices, I don't have voices. But I think that's what I was going through when I was a teenager. I think I had all these condemning thoughts, and it wasn't like they came out of the blue, but it happened eventually. It just started probably 16 or 17 years old. But I did, like I said, I went to my mom and I said, I need help. And I don't know how I how I did that because I I mean, what if the help she wanted to give me was not, you know, what if they wanted, you know, we've all heard stories of help is help that is not helpful, you know.
SPEAKER_04
And and so I think it's wonderful that you were able to have that insight and you went to your mom uh for help. And you know, it's interesting to hear for me to hear you talk about why you didn't want to say you had voices, you would rather think of it as intrusive thoughts. Because when I was writing my book, I worked with my son, and you know, he's about your age, he's 43, and he we only had one big argument about my book, and that was it. I had written that he was hearing voices, and he kept saying, I do not hear voices, but then later on, he would, you know, ask me why I said that mean thing about him, and I said, I didn't, you know, that was your mind playing tricks on you, you heard my voice, and so he would acknowledge that, but yet we get back to this book. I do not hear voices. Yeah, now just explain to me why he had such a fuss about that, and I think that's important. You know, you are as he is, and I think all of our sons are very bright, and he knew that it wasn't acceptable to hear voices, so he preferred to call it exactly what you did an intrusive thought. Thank you for that. You've given me um right away in this program um insight into helping with my own family situation. I'm gonna discuss it with Jim later on. My question for you is we as mothers were dealing with our children when they first were hospitalized, and we never could, or at least I could speak for myself, but probably for a lot of uh parents, could understand when the meds made Jim better why he couldn't realize that and didn't want to stay on them and then had you know good periods and bad periods, ups and downs. Could
you help us understand from your perspective what was going on from your side of things with going on and off of meds if you did, or the ups and downs and hospitalizations and in and out? Yes.
SPEAKER_01
Well, the the world of medication is something that is so oh it's just it's I you know I I was put on well let me go back.
SPEAKER_03
Yeah, let's yeah, let's just fill in the story. You so you went.
SPEAKER_01
And I basically had a psychotic break and I lost a lot of weight. Um, I was working in the cafeteria at one of at one of near one of the dorms, and I had not you had not been hospitalized ever at this point. You had just I had been hospitalized, but I wasn't put on medication as a teenager. Um, I'm not sure why. I don't know. I can't even it's like I can't even remember that. I don't remember the medication. I just remember when I was 18 that my parents came, I was at Kansas State, and my parents, my mom came and got me. I called my dad. I had been sleeping in another building in the bathroom uh in the art building on a cot in the woman's bathroom because I thought I was in danger at my dorm and I was wandering around campus, I wasn't going to any of my classes, I wasn't eating, I was almost raped, and because this man, this other student started following me. So my parents, my mom came, took me, and thankfully she was able to get me out of school without it affecting my grades or getting F's. But my parents um took me actually to a hospital in Tulsa, Oklahoma, and it was there that I was diagnosed with schizophrenia at the time, schizoaffective disorder. And you're like 19 at this point. I was about 19, and they um told my parents that they had just come out with this new antipsychotic called Risperdol. So it had just actually come out in I think 1993 been approved, and it uh they were told it acted immediately. So um, when I was at this hospital, I was there for about a month in Tulsa, Oklahoma, they put me on this Risperdol. Well, um, before then, I had been. doing weird things and trying to trying to feel again just touching myself and doing weird things because I was trying to get my feelings back and I was talking to people weird and and so this Risperdol started acting immediately. I'm not immediately but I mean I could feel something happening in my brain. Wow because my feelings were almost I almost shut down emotionally and I was so scared of that that I would have to be in a group home the rest of my life and then my family would leave me in this group home and I'd die there. I was really terrified of that. And so the Risperdol gave me my feelings back and helped me to can reconnect with my feelings.
SPEAKER_02
You know it seems to me like you you've had insight all along you know like you were aware that things were really because the thing that we've all struggled with over and over again is our sons not understanding that they are sick. And it seems like you've really even in the very beginning you were aware that something was wrong. Am I right?
SPEAKER_01
I yes I I think I was aware that something was wrong. I to be honest I saw it as different things like hatred towards myself or fear or panic or anger but I I did have a little bit of insight like you said but it wasn't actually until and I went on and off medication I I was I was on Depicode and Lamyctal and all these different medications and um it wasn't until a specific hospitalization in like 2004 I think it was that the psychiatrist sat across the table from me I remember and I was facing the get discharged and he said I know so and so a family member can accept your illness and that was why I was struggling one of the reasons I was struggling so much because I wanted my family my mom and sister were more accepting but my dad was struggling said but can you accept your illness and I and I thought by golly no one's ever asked me that before and you know I thought I thought I'm actually gonna actually think about this you know and it really it really after I I struggled with jobs and school and I never finished school and I never you know I not give two weeks notice at jobs and in the medications changed and I really feel like when he asked me that it something in my psyche shifted where I really thought I actually have a choice here. Someone's presenting me with a choice I can either accept my illness or I can
and you know you guys have talked about Dr. Amador who I actually got to meet in New York and because he was in the documentary I was in but uh Dr. Amador talks about you know anosynthia and the inability it's not denial that you have an illness is a feature of the illness that you don't have insight into the illness.
SPEAKER_00
And so when the psychiatrist asked me that I really took that and and really it it began a a real deep work work in me that I can consider I mean I continue to this day because even even now sometimes when I'm at the coffee shop and someone looks at me funny or I think they're looking at me funny and I think I could say something this person and then something says maybe not and then I think and then I think okay remember I accept and I don't do it always with joy but I accept that I have an illness and you know I do it I'm at the coffee shop I'm at the library okay accept here accept there accept it's a daily thing and it's taken years years and years of struggle wow so when you accept your illness you still mentioned that you do the what we see as a typical thing with our family members going on and off your meds.
SPEAKER_04
So when you accept an illness why would you go off your meds? Did you think you were healthy enough not to need it or what were you thinking then?
SPEAKER_01
Well that's a very good question because I did accept it for a while but then I um what had happened was my my doctor he was an hour away in Kansas City and he had been my psychiatrist for many years. And so he was moving so his wife could actually become a doctor and she she was going to med school herself so we were splitting ways and I was trying to find a psychiatrist and I was doing it on my own. I was trying to find it a person to see me and so I kind of went to different psychiatrists and one of them put me on a lot of meds and I was so mad and the voices
I can say that now but you know the the thoughts whatever were saying to me flush all your medication down the toilet and this is like five different medications and like of the depicts on 1500 milligrams or something like that. And and I had gained weight you know and I just for anybody yeah and so you know what I did every night I I strategized about how I was going to flush my medication down the toilet and I did a little bit at a time and I did not tell my mom obviously and my mom was panicking because I had just gotten my own apartment and I wasn't letting her in my apartment I started a relationship with a 72 year old man my upstairs neighbor and he took advantage of me and I was only about 37 38 well I was probably about 33 I don't know something in my 30s but I got off all my medication because I didn't want the side effects and I didn't want it in me and and I drove to a nearby town in the middle of the night one day I drove to a on the turnpike or I drove on the highway which I had never done in my life and I drove to a nearby town and um started talking to the people on the main street downtown weird things like they could read my mind and then so obviously getting off the medication was causing me to have hallucinations and delusions and I did a lot of scary scary things. In fact that was when the law enforcement and I do mean law enforcement uh several people talked to my mom and because I was leaving messages on a man's phone that I used to babysit for who had a pretty important job in Kansas and um so law enforcement was called and it was a really scary time for my family and this was in the winter of 2006 and January and February of 07. And my sister who was had just graduated from college and was working for a uh a company in Wichita which is about three hours south of Topeka she came to Topeka and um my mom had researched different hospitals and they she was even going to take me to Mayo's if she could get me there but she read about the University of Kansas hospital in Kansas and they would take my insurance and my sister who's seven years younger and she's been there for me but she drove me and my mom there and I was completely off all my medication I had gone from about 220 pounds over months to about 120 and um that's where it all began was at that hospital. But um you know when you're completely immersed in your psychosis and you're thinking Muslims are after you or whatever and they're trying to kill you or you know I was thinking really just dang I was having dangerous paranoia and it was really scary. And even now I look back on that and that's what makes me stay on my medication in many ways is to say not out of fear because I don't think I should stay on my medication out of fear but out of oh that's why you know or there's a reason I'm on medication and the other thing I've gone through is just acceptance of that time acceptance of what I did even though I don't understand it.
SPEAKER_03
But it was because of you know the psychosis well at this point in the conversation it's pretty clear that this is going to be a two-parter. Please download our next episode episode 10 for part two of Rebecca's story where we'll talk about what happened after these dark days and how she rebuilt her life and messages to those with schizophrenia. 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 Miriamfeldman dot com, MindyGryling dot com, or randyk.com
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