Intrinsic Goodness in the Illness with 1,000 Faces

Interview with Miriam Feldman By Brave Expressions

Story Contains

Listen to our talk with Miriam (Mimi), and read her full story below. She is an artist, writer, and mental health activist who cares for her 33-year-old son Nick who has schizophrenia. Mimi is releasing a book called, He Came in With it:  A Portrait of Motherhood and Madness. It will be released in June 2020. You can pre-order it online now at her website: www.miriam-feldman.com

Sarah Strickler (SS): So Mimi, what is your background with mental health?

Miriam Feldman (MF): Well, up until 10-15 years ago, none. It was not something that was even on my radar in my life, you know. You have these kids and you spend 15 years or so worrying about child abductions and cancer, and accidents and then out of left field comes schizophrenia, and I had to do some real catching up. It was something that I knew nothing about.

SS: What happened when he was first diagnosed?

MF Well it is typical for these serious mental illnesses with boys, that they get diagnosed in their late teens or early 20s. with women, it's a little later, it's usually mid 20s. Nick was just about 20 when he finally got the diagnosis. But the problems and trouble had started maybe when he was 15, or 16, but it takes a long time to identify

SS: What pushed you to seek help for him?

MF: Well, it's tricky because, you know, if you were to make a list of all the red flags for serious mental illness, and you're going to make a list of normal teenage behavior, you're going to have virtually the same list. So it's hard to know what's going on at first because teenagers all act crazy, and they're all inconsistent and moody and lash out. And so for a long time, we thought he was just a teenager and it was just fine., and it would pass. But then enough time went by, and the behaviors got more serious, and we started to realize more was going on. And so at that point, we started to seek help. But it was a long path from the moment you realize something's going on, till it becomes identified. I mean, what brought us to finally really take it seriously was a suicide attempt.

SS: What was it like receiving the diagnosis? Did you try to hide it at all?

I just remember hanging up the phone and standing there in this alleyway behind the restaurant, and just thinking, so this is it. My son is mentally ill, we've crossed over into that world”.

MF: In the beginning and you know, it's a protracted experience going through this trying to get the correct diagnosis. It started out with anxiety and depression. And then he saw a doctor and therapists and then finally that therapist after maybe a year, suggested that he have medication because it wasn't being dealt with using talk therapy. And so then it went from depression and anxiety to more serious versions of that possible medication. Then he was diagnosed bipolar and finally schizophrenia. The big turning point was the bipolar diagnosis, because that, to me, was like the door between seminormal issues. Though I know of course that depression and anxiety can be crippling and debilitating, in my mind at that time, and also my understanding of things, was that those seemed like things that you could have and still have a life. When you cross the line over to bipolar, it felt like now we're in treacherous waters. Now this is serious. So I remember very clearly getting that diagnosis. And I just remember I got it working on a painting job. I was working on a mural in a restaurant. And the doctor called in the evening. And he said, he told me that we have a diagnosis. He said we’re calling it bipolar. And I just remember hanging up the phone and standing there in this alleyway behind the restaurant, and just thinking, so this is it. My son is mentally ill, we've crossed over into that world. In a way it gave me some peace because at least we had a name. We knew what it was. But of course, it was terrifying. And also I didn't want it you know, I didn't want that answer. Once it was said out loud, it was something that was real. So it was awful. It was an awful moment.

“We do ourselves and our children a terrible disservice by hiding things, it just needs to be out in the light of day and we need to talk about it and we need to get over stigma”.

SS: How did you cope with that in the beginning?

MF: Well, for me in the beginning, I'm what I call pathologically functioning.  It's like no matter what's going on, I function. So in the beginning in the early years, I just, I just functioned, you know, I just tried to take care of everything and, and I was intent on fixing I was going to fix it, I was going to figure this out and I was going to fix it. And it was many years before I realized that that's not a realistic expectation. And then also, um, I was, I don't think that I was consciously embarrassed, but it wasn't something that I talked about. I mean, there's a lot of stigma around this. And that's why I'm so open now about telling my story and talking about it because I think that we do ourselves and our children a terrible disservice by hiding things, it just needs to be out in the light of day and we need to talk about it and we need to get over stigma. Because all that does is stop us from moving towards the light. You know, it just gets in the way of healing.

SS: How would you describe schizophrenia for people that are unfamiliar with it?

MF: When you get into what they termed the serious mental illnesses there's several of them, but the two that most people think about and are exposed to are schizophrenia and bipolar. Bipolar is a mood disorder. So when you have bipolar, your mood cycles, so you go up and down when you are on your peak highs and your low lows. If you have serious bipolar, you can dip into psychosis. When you're in your mania or your deep depression, so you go mania, depression, mania, depression and it cycles. And so when you get to those high points and low points you can go into psychosis. But it's not a thought disorder. Schizophrenia is a thought disorder and it's characterized by disordered thoughts, by delusions. You're in your own reality.. Normally the thoughts are what are affected. And so generally people with schizophrenia, it's not so much about emotions and moods, it's a thought disorder. But what Nick has is schizoaffective disorder, which is kind of a combination of both. He has schizophrenia, he has the thought disorder, but his moods also cycle and with schizophrenia, your moods aren't cycling, but you have this thought disorder and you go into psychosis through that way. But with Schizoaffective, it's kind of both.

SS: Could you paint a picture of what one of his experiences would be like?

“And she said, that's what the world is like for your person with schizophrenia, every day of their life. And it just, I mean, it made me want to weep”.

MF: Well, it's hard for me to do that, because I don't really know I basically spent the last dozen years trying to get inside of his head and understand what it's like. I mean, I know from educating myself what it's like for people with schizophrenia. They hear voices. Generally those voices are not friendly voices, they're generally negative, they are voices telling them, you know, they're ugly, or they're stupid, or they're fat, or they're losers, things like that, you know, they're not encouraging voices generally. And, they also have sort of delusional voices where they hear people telling them to do things and again, they're not telling them to pick up litter or go help old ladies across the street. It's generally negative and destructive or frightening. It's a horrible dark world to imagine living in. One thing I can tell you, I'll try and tell you briefly kind of a complicated thing.

But when all this first started, I went to NAMI, and they have a program called the family to family program, which is a 12 week educational seminar. So it's not a support group. It's more teaching you what the heck is going on. Because that's the whole thing when this happens, is that your whole life is turned around and it's a different reality. You need to learn really fast, what is going on.

And so, in that class, they did an exercise once to try and teach us what it feels like to have schizophrenia. What they did was put us in two pairs, and one person was sitting at the table and your partner was standing behind you, I was the person sitting at the table. The person sitting at the table has a piece of paper and a pencil. The person standing behind them has a script. And each session has 10 or 12 couples and each person's script is different, but they're all some variation of the person at the front of the room is lying to you. It's the devil, don't listen to them. They're trying to tell you something evil and destructive, something like that.

And so I'm sitting at the table with a pencil and paper and mine is my task is to listen to the person at the front of the room, who's giving a set of very simple directions of how to draw a certain geometric design, and we're supposed to focus on her and draw this design she is telling us to do. While we're doing that we have the person whispering in our ear, telling us not to listen to her that she's the devil. She's a monster. She's from outer space. And not only do you have that, but you have the entire room of people talking. So you have this cacophony of noise all coming in at the same time, one person whispering your ear saying these horrible things, and you're trying to focus on the person at the front of the room and follow some directions. And so it was an impossible experience. And it went on for about 30 seconds to a minute. And then the leader said, Okay, now stop, and everybody stopped. And you could just hear this reverberation in the room of what had been happening, and the tension of all the people. And she said, that's what the world is like for your person with schizophrenia, every day of their life. And it just, I mean, it made me want to weep. And it made me understand a lot of things like when I'm talking to Nick, and he reacts in a bad way or he ignores me or he just flinches away. It's like all this other stuff is going on.

And one of the things about schizophrenia is that it affects the filters in your brain that filter out sound, so that if you're in a restaurant and we're talking to each other, and there's all this noise and all these other conversations, we're able to sort of filter out that sound, focus on each other and listen to each other. With schizophrenia, generally, all the auditory information comes in at the same velocity and the same measure of loudness. So they're very sensitive to the environment, you know, rooms full of lots of people with lots of noises, and they're assaulted with the sensory input all the time. It just, the more I learned about it, the more terrible it sounds. But Nick doesn't talk about it. He doesn't even admit he hears voices. So it's very hard to know what his experiences

SS:What is your relationship with him like?

“In a terribly evil and destructive kind of manifestation, it tailors itself, it's different with each person”.

MF: We're very close. I'm his primary caregiver. And we spend, you know, he spends more time with me than anybody. He's more open and communicative with me than probably anybody, except maybe his sisters. But it's just that they are adults now so they're in their own lives.  A lot of times when we're together, it's just me rambling and him sitting there, but he likes to be with me. He likes it, we go to a restaurant and have something to eat. He likes to go into errands and do things like that. But you know, sometimes he doesn't talk at all. He's just somewhere else. Sometimes he's very engaged. Sometimes he'll call me on the telephone and start talking about old times or talking about ideas or things that he wants to do. And I'll swear to myself, he doesn't even have schizophrenia. He'll seem completely normal. It's the thing about this disease. It is bespoke for each person. It's not like diabetes, and this is how it is. And this is what you have for cancer and this is the characteristics of cancer.

“This one doctor that we see said: we call schizophrenia the disease of 1000 faces, it is completely different for each person”.

In a terribly evil and destructive kind of manifestation, it tailors itself, it's different with each person. So, you know, I mean, it's terribly frustrating as the loved one to see some people with schizophrenia seem like they've got a regular life and they're fine. And then Nick's life is so mitigated, so abbreviated and so narrow. And then I look at Nick, and I compare him to the people I see on the corner of the street screaming at people, and I think thank god, he's so much better than them. But it's like there's so many phases. This one doctor that we see said ‘we call schizophrenia the disease of 1000 faces, it is completely different for each person’.

SS: What's the dynamic of your family like?

“Serious mental illness is like a gale force hurricane that blows through your life. And anything that isn't firmly nailed down is gone”.

MF: Well, it's changed. It's evolved over the years. In the beginning, it’s you know, I've said this before, and I'll say it again, serious mental illness is like a gale force hurricane that blows through your life. And anything that isn't firmly nailed down is gone. So in a sense, it's this great equalizer where anything that's not important anymore, you just let go up. So there was kind of a nice lesson in that for me as a person of just letting go of the little stuff, I don't sweat the little stuff anymore. If there's not blood or fire, I don't get upset.

And so that was that was the initial thing, the way it impacted me was I'm going to save the family, I'm going to save the family. I'm going to save Nick, I'm going to fix this.  And that was my focus for many years. What happened to his sisters, his younger sisters became marginalized because when one kid is on fire, you don't have the attention or the capacity to pay attention to the other siblings. And I think that that's probably a pretty universal experience for siblings of kids with these serious mental issues. So that was rough. I feel like my daughter's didn't get the same mom that the two older kids got. Especially my youngest daughter, because she's very young when this started and for his middle sister, Lucy, who's closest in age to him, it was a terrific loss. It was. He was her mentor, he was her hero. He was her guide into life, and she lost him. And you know, she's 30 now, and she's just gone into therapy herself. And she told me she's just starting to finally deal with some of this, that it was something that she could just sort of compartmentalize, but it was I saw it, you know, I knew it, but you know, she had to come to it on her own timetable. It was a devastation and a loss and I don't think she'll ever really get over. For my youngest daughter, she had an easier time accepting how he was. She didn't feel the same sense of loss of a brother. Because she was so young when it all started. So out of the whole family, she's the one who kicks and screams and resists it the least.

“I would lock myself in the bathroom at night and turn on the water and cry because I didn't want them to hear me crying.”

She's able to accept it more because he was so young. But for her, the real damage was she really lived your childhood in the margins. You know, I mean, Lucy was older and already a teenager and, you know, had her own experience of it, but poor Rose was just sort of left to the wind, you know, and, and so each one of them has their own guilt and pain and loss and damage from it. You know, I'd like to paint some kind of pretty picture here, but it's pretty devastating and it's pretty damaging. One thing with Rose, and this will demonstrate the difference in her perception of all of this, is one of the things I used to do in the beginning is I  was really intent on keeping a good face for the neighbors for everybody. And for the girls also, I just didn't want them to know how much I was falling apart, which is ridiculous because of course, they knew and my advice to anyone would be, just be open about it because they know anyway. And so I used to hold it together during the day being pathologically functional, running a business, raising the kids doing all this stuff. And I would lock myself in the bathroom at night and turn on the water and cry because I didn't want them to hear me crying.

“My ideas of what the future was going to be, are just vapor”.

And one night I came out of the bathroom and Rose caught me. I was crying. I was busted. I mean There's no way I'm going to say I wasn't crying. And so she asked me what was wrong? And I said, I'm crying because I miss your brother. She said, What do you mean you miss Nick? Nick's not gone. He’s still here. You know, he’s not dead. What are you talking about? And I said, Yeah, I know, he's still here, but he's not who he was supposed to be. She looked at me right in the eye. She said, yeah, he is. It's just not what you thought. And that has, I mean, first of all, it's incredibly moving and painful. But it also is so wise. And it has informed me, and it's informed me ever since and it informed the title of the book, which is he came in with it, which is, this is who he is. This is how he was supposed to live, maybe it didn't seem that way, in the first half of his life, we thought he was gonna have this other life. But this is his life, and this is who he is, and we have to accept it. And we have to meet him where he is. And the sooner we can do that, the better we're all going to be. And so, and to this day, I'm still kicking and screaming against it, but I go back to that over and over again and just remind myself that this is who my son is, and my ideas of what the future was going to be, are just vapor, you know, what I mean? They're not something that's real.

SS: How has your husband's relationship with Nick evolved over time?

MF: It's a sad story and I'm sorry to say it’s another thing that doesn't have a happy ending. And it's not because of lack of love on anyone's part. His father loves him fiercely. It’s because of our, you know, what people are able to do and what people are able to bear. Nick and his dad, we used to joke that they were like John Lennon and Sean Lennon. They were inseparable or his dad Craig has a not great history with his own father and a lot of trauma and a lot of inherited pain that he carries with him. And then he had a son. And it was like he was going to fix everything by being the father for his son that he didn't get. And they were like, two peas in a pod. And, you know, since he was a little teeny boy and he would hang out with Craig in his studio and draw and paint with him. As he moved into his, you know, childhood years and into his younger teenagers, they would go on road trips together and see the country together, and they were both devotees of Bob Dylan and Craig would teach him about the beat poets and about art and about the 60s and the hippie movement.

“Like a person who's hungry and looking at a plate of food, but is too afraid to eat it”.

Yeah, they were just like a storybook. And when this all happened, it was really kind of more than he could bear. And for many years, he just again for many years, he fought against it, and he even would deny that it was mental illness. He would think, he's just lazy. And it sounds so awful. But it's not uncommon. It's not some freaky thing Craig did. It's a very common thing with men. Thinking, he's just lazy, he just wants to get attention. So there was that denial aspect of it. And that pulling away from the family aspect of it and what it's evolved to now over the many years and he's there for his son and he loves his son, but it is almost too painful to be close to him. And so, they're not close anymore. And it's heartbreaking.  It's heartbreaking because I see it from where I sit, and I see a boy, young man, Nick, who idolizes and adores his father, and I think would love to be closer with him, but doesn't get the chance. I see a father who's like, almost like a person who's hungry and looking at a plate of food, but is too afraid to eat it.

“We're a family and we're strong and we're together. And I am proud of that”.

Some dynamics like that it's hard to explain. So it's tragic. It's just tragic what it does. You know, I, again, I wish I could tell you a happy story. But on the other hand, it didn't destroy our family. We are a strong family and we love each other fiercely. And Craig and I have been together for almost 40 years. And we are a family in whatever damaged, you know, bizarre iteration. We're a family and we're strong and we're together. And I am proud of that. And I'm not proud of it in the sense that it's something that I've done. I'm proud of it in the sense that it demonstrates what real love is.

SS: I'm curious about your own self care. How did you manage, you know, taking care of yourself and battling your own emotions with everything that was going on?

MF: Well, I'll be honest with you in the beginning, I was in a lot of denial. You know, like I said, I was convinced I was going to fix it. In the first few years, honestly, the way I did self care was drinking a lot of wine at night, you know, we kept to the days and then I would lock myself in the bathroom and cry, and then I would drink wine and watch TV. I was drinking way too much wine for a while there. But it was my coping mechanism. Then I realized that wasn't going to sustain me.

One thing is I've always had a good exercise regimen and the time when all of this started, I used to do pilates and still love that. But the pilates was way on the other side of town and it was expensive and having a crazy kid spinning out of control and an absent husband, and also money and everything being taxed by the whole situation didn't lend itself to driving halfway across town and paying a bunch of money to pilates so I stopped doing that.

“It started to get into my brain and it started to make sense this idea of surrender isn't giving up, surrender is acceptance”.

Exercise is good for your emotions, it's good for your body. So I went to a yoga center, within walking distance of where we lived, and I’ve never been a yoga kind of person. I was never like, into the woowoo stuff, which is what I categorized yoga as being at that point. But I thought it's there. It's cheap. It's close to home, and I'll get some exercise. So I started doing yoga. And I sort of didn't listen to the teachers and all the, you know, yoga philosophy. I just thought I'll get in shape. But as I started doing it, all the things that these women were, and they were mostly women,  were saying it started to seep in, started to seep in and I started hearing what they were talking about.

They would talk about things like surrender, which is something that to my mind was a sign of weakness. You know, surrender is waving the white flag and giving up which I was never going to do. But it started to get into my brain and it started to make sense this idea of surrender isn't giving up, surrender is acceptance. Surrender is accepting what is and so then it started to be like this map where little lines are being drawn and connecting back to what Rose had said. It's just not what you thought, accepting what it is instead of beating your head against a brick wall.

“I can't change that Nick got schizophrenia and you know, it's hard. I can't say I have 100% acceptance, but I don't throw myself up against the cement wall anymore. And that's been a big change”.

Now I'm 64 and I live completely differently. And I don't mean what I do every day with myself other than I meditate and I practice yoga every day. But how I live in this world, how things affect me, how I process things, how I deal with things--It's been about completely rebuilding. It's been about just surrendering myself to what is unchangeable, which kind of goes back to, you know, the thing about “accept the things I cannot change”.  We try not to do harm to anybody else. And we have to accept things that are finite, you know, I can't change that Nick got schizophrenia and you know, it's hard. I can't say I have 100% acceptance, but I don't throw myself up against the cement wall anymore. And that's been a big change.

SS: What has been your experience managing the stigma and the misconceptions surrounding schizophrenia?

MF: Just to be really open, blatant and unreserved about it. I think that hiding is just going to hurt you. It's not good for anybody. It's not good for your loved one. And it's not good for you. So I think that it’s  important to be open. I don't think everybody is going to be out there being interviewed or writing books, you know, I mean, it's not what everybody's gonna do.

“I think that it's really important that those of us who have the inclination or the capability to tell our stories, tell them because the time for hiding away is gone”.

For me. I'm an art maker. That's what I've done my whole life. I make art. And it's always been painting. I never wrote a book before. But I felt like the universe had given me a story that I couldn't adequately tell with the paint, and also that it wouldn't be accessible to others in a visual art form. I really wanted to not make a guidebook because I don't have anything to tell anybody because each situation is different. There's no how to, but just this is what happened to me. You're not alone. You're not the only person. My story is different, but it's the same in enough ways so that you can see yourself in it. And I think that it's really important that those of us who have the inclination or the capability to tell our stories, tell them because the time for  hiding away is gone.

SS:What advice would you give to someone else, another mother, in your situation?

MF: Educate yourself, because knowledge is power, learn from books that are written by experts on the subject, be very wary about non mainstream stuff and I don't mean non mainstream in the sense of a holistic approach, that is a more integrative approach of dealing with mental illness by nutrition and lifestyle. All of that's great, but there's a lot of fringe stuff out there that you just have to be careful about because everything is presented now in the same format, and so you need to be careful. So I would say that is the first and most important thing. And then find some sort of practice in your life. You know, whatever it is, for me, it turned out to be yoga and meditation, which is the last thing I ever thought I would be doing. But some sort of practice that gives you the time and the space to learn acceptance, to learn how to accept and move through what's happened to you, because it's not going to just happen on its own. So whether it's something like yoga and meditation, whether it's therapy, whether it's whatever, find a way to come to terms with yourself. Don't think that it’s not important because it is and then forgive all your screw ups. Because it's impossible to do this well. You know, you can only do it through a series of mistakes and fumbling and picking yourself up. And so you have to forgive yourself.

“Even though this disease decimates lives, it could not quelch or stifle the intrinsic goodness of who Nick is”.

I did another interview, which clarified something for me. Somebody asked me, “what am I most proud of?”. I thought about it, I'm not really proud of anything. And I suppose in a general sense, I'm proud that I'm a good strong woman and I tried to do the right thing, but I mean, that's kind of the least I can do in this life. I'm not proud of any accomplishment in terms of this situation. If there's one thing I'm proud of in all of this, it's Nick. He has gone through what is arguably one of the worst and certainly one of the ugliest mental illnesses. Something that manifests itself in a way that steals goodness, devours love, leaves the person either warped in a horrible way or flattened in a way where they don't have that goodness, that juice of loving life that we all know, that means so much. So Nick got that disease and that disease that arguably could be called evil, you know, in how it manifests itself. Even though this disease decimates lives, it could not quelch or stifle the intrinsic goodness of who Nick is. He's still gentle. He's still good hearted. He's himself, even though he doesn't engage. He's not emotional in that way. He is his personality and everything is kind of flattened. But it couldn't touch his intrinsic goodness. And that's when I'm proud of and that's not anything I did. That's just who he is. And I'm proud of that.

I think that if you operate from a place of love, and I'm not talking about Hallmark cards, flowery love, I'm talking about fierce, tough wiring, you know, relentless Love, love as a verb. If you operate from that place, you're going to still make mistakes, but you're not going to do anything terrible. You know what I mean?

SS: So what prompted you to write your book, and what can you tell people about it when it comes out in June?

MF: I just had this overwhelming desire to tell the story. I think initially, it was about getting it out into a place because like I said, I'm an art maker, so I needed to take it out of me and put it in a place. So that was what compelled me initially, It enabled me to  sort out and come to terms with a lot of my own stuff.

“I think that writing the book, it was a reckoning. It was a reckoning for me. Me as a mother, me as an artist, me as a woman in the world, and me in my marriage”.

And that's another thing, just a little bit off topic of the book, but just in the writing of the book, too.  And this is something I would also say to other moms and other people is we just lie to ourselves, you know, and I mean, I spent so many of these years just lying to myself about so much of this stuff. And I think that writing the book, it was a reckoning. It was a reckoning for me. Me as a mother, me as an artist, me as a woman in the world, and me in my marriage. And, you know, obviously I never in a million years would have chosen to come to it in this way. Nick's illness has propelled me into being so much better of a person and living so much more real and honest of a life than I was before. And I'm grateful for that at least. I mean, it hasn't been an easy or painless process. But I think that if we're honest with ourselves and honest in our lives, the quality of our lives are gonna be so much better.

So I wrote the book and then it was so much work then I I had imagined,  and it meant so much to me because it also became a legacy of and for Nick. It's Nick’s story. It's less at this point about me, as It is about our family, and about Nick and Nick's relationship with his sisters and the world and his father specially. So it's a portrait of a family. And I just think that it will help other people, and it will resonate for other people. People will feel less alone and people will feel less stigmatized and less isolated and less afraid. If I had picked up a book like this 15 years ago, when all this was starting, it would have made a substantial difference to me.

“Obviously I never in a million years would have chosen to come to it in this way...Nick's illness has propelled me into being so much better of a person and living so much more real and honest of a life than I was before”.

So that is now mine and  Nick's legacy, Nick, this beautiful, incredible, talented human being who didn't get the future I had imagined for him. He got this future. I see through the miasma of schizophrenia and the mitigation of his life and the changes that it's made, and I see the sort of glowing thing of who he is. I'm wanting to get that down on paper.

SS: We can all learn something from your story, and see how inspiring and brave you are. If someone wants to find out more about you, where can they connect with you?

MF: They can find me at: www.miriam-feldman.com. And on there is a blog and a link to find my book when it comes out in June 2020.

“I see through the miasma of schizophrenia and the mitigation of his life and the changes that it's made, and I see the sort of glowing thing of who he is. I'm wanting to get that down on paper”.

Listen to our talk with Miriam (Mimi), and read her full story below. She is an artist, writer, and mental health activist who cares for her 33-year-old son Nick who has schizophrenia. Mimi is releasing a book called, He Came in With it:  A Portrait of Motherhood and Madness. It will be released in June 2020. You can pre-order it online now at her website: www.miriam-feldman.com

Sarah Strickler (SS): So Mimi, what is your background with mental health?

Miriam Feldman (MF): Well, up until 10-15 years ago, none. It was not something that was even on my radar in my life, you know. You have these kids and you spend 15 years or so worrying about child abductions and cancer, and accidents and then out of left field comes schizophrenia, and I had to do some real catching up. It was something that I knew nothing about.

SS: What happened when he was first diagnosed?

MF Well it is typical for these serious mental illnesses with boys, that they get diagnosed in their late teens or early 20s. with women, it's a little later, it's usually mid 20s. Nick was just about 20 when he finally got the diagnosis. But the problems and trouble had started maybe when he was 15, or 16, but it takes a long time to identify

SS: What pushed you to seek help for him?

MF: Well, it's tricky because, you know, if you were to make a list of all the red flags for serious mental illness, and you're going to make a list of normal teenage behavior, you're going to have virtually the same list. So it's hard to know what's going on at first because teenagers all act crazy, and they're all inconsistent and moody and lash out. And so for a long time, we thought he was just a teenager and it was just fine., and it would pass. But then enough time went by, and the behaviors got more serious, and we started to realize more was going on. And so at that point, we started to seek help. But it was a long path from the moment you realize something's going on, till it becomes identified. I mean, what brought us to finally really take it seriously was a suicide attempt.

SS: What was it like receiving the diagnosis? Did you try to hide it at all?

I just remember hanging up the phone and standing there in this alleyway behind the restaurant, and just thinking, so this is it. My son is mentally ill, we've crossed over into that world”.

MF: In the beginning and you know, it's a protracted experience going through this trying to get the correct diagnosis. It started out with anxiety and depression. And then he saw a doctor and therapists and then finally that therapist after maybe a year, suggested that he have medication because it wasn't being dealt with using talk therapy. And so then it went from depression and anxiety to more serious versions of that possible medication. Then he was diagnosed bipolar and finally schizophrenia. The big turning point was the bipolar diagnosis, because that, to me, was like the door between seminormal issues. Though I know of course that depression and anxiety can be crippling and debilitating, in my mind at that time, and also my understanding of things, was that those seemed like things that you could have and still have a life. When you cross the line over to bipolar, it felt like now we're in treacherous waters. Now this is serious. So I remember very clearly getting that diagnosis. And I just remember I got it working on a painting job. I was working on a mural in a restaurant. And the doctor called in the evening. And he said, he told me that we have a diagnosis. He said we’re calling it bipolar. And I just remember hanging up the phone and standing there in this alleyway behind the restaurant, and just thinking, so this is it. My son is mentally ill, we've crossed over into that world. In a way it gave me some peace because at least we had a name. We knew what it was. But of course, it was terrifying. And also I didn't want it you know, I didn't want that answer. Once it was said out loud, it was something that was real. So it was awful. It was an awful moment.

“We do ourselves and our children a terrible disservice by hiding things, it just needs to be out in the light of day and we need to talk about it and we need to get over stigma”.

SS: How did you cope with that in the beginning?

MF: Well, for me in the beginning, I'm what I call pathologically functioning.  It's like no matter what's going on, I function. So in the beginning in the early years, I just, I just functioned, you know, I just tried to take care of everything and, and I was intent on fixing I was going to fix it, I was going to figure this out and I was going to fix it. And it was many years before I realized that that's not a realistic expectation. And then also, um, I was, I don't think that I was consciously embarrassed, but it wasn't something that I talked about. I mean, there's a lot of stigma around this. And that's why I'm so open now about telling my story and talking about it because I think that we do ourselves and our children a terrible disservice by hiding things, it just needs to be out in the light of day and we need to talk about it and we need to get over stigma. Because all that does is stop us from moving towards the light. You know, it just gets in the way of healing.

SS: How would you describe schizophrenia for people that are unfamiliar with it?

MF: When you get into what they termed the serious mental illnesses there's several of them, but the two that most people think about and are exposed to are schizophrenia and bipolar. Bipolar is a mood disorder. So when you have bipolar, your mood cycles, so you go up and down when you are on your peak highs and your low lows. If you have serious bipolar, you can dip into psychosis. When you're in your mania or your deep depression, so you go mania, depression, mania, depression and it cycles. And so when you get to those high points and low points you can go into psychosis. But it's not a thought disorder. Schizophrenia is a thought disorder and it's characterized by disordered thoughts, by delusions. You're in your own reality.. Normally the thoughts are what are affected. And so generally people with schizophrenia, it's not so much about emotions and moods, it's a thought disorder. But what Nick has is schizoaffective disorder, which is kind of a combination of both. He has schizophrenia, he has the thought disorder, but his moods also cycle and with schizophrenia, your moods aren't cycling, but you have this thought disorder and you go into psychosis through that way. But with Schizoaffective, it's kind of both.

SS: Could you paint a picture of what one of his experiences would be like?

“And she said, that's what the world is like for your person with schizophrenia, every day of their life. And it just, I mean, it made me want to weep”.

MF: Well, it's hard for me to do that, because I don't really know I basically spent the last dozen years trying to get inside of his head and understand what it's like. I mean, I know from educating myself what it's like for people with schizophrenia. They hear voices. Generally those voices are not friendly voices, they're generally negative, they are voices telling them, you know, they're ugly, or they're stupid, or they're fat, or they're losers, things like that, you know, they're not encouraging voices generally. And, they also have sort of delusional voices where they hear people telling them to do things and again, they're not telling them to pick up litter or go help old ladies across the street. It's generally negative and destructive or frightening. It's a horrible dark world to imagine living in. One thing I can tell you, I'll try and tell you briefly kind of a complicated thing.

But when all this first started, I went to NAMI, and they have a program called the family to family program, which is a 12 week educational seminar. So it's not a support group. It's more teaching you what the heck is going on. Because that's the whole thing when this happens, is that your whole life is turned around and it's a different reality. You need to learn really fast, what is going on.

And so, in that class, they did an exercise once to try and teach us what it feels like to have schizophrenia. What they did was put us in two pairs, and one person was sitting at the table and your partner was standing behind you, I was the person sitting at the table. The person sitting at the table has a piece of paper and a pencil. The person standing behind them has a script. And each session has 10 or 12 couples and each person's script is different, but they're all some variation of the person at the front of the room is lying to you. It's the devil, don't listen to them. They're trying to tell you something evil and destructive, something like that.

And so I'm sitting at the table with a pencil and paper and mine is my task is to listen to the person at the front of the room, who's giving a set of very simple directions of how to draw a certain geometric design, and we're supposed to focus on her and draw this design she is telling us to do. While we're doing that we have the person whispering in our ear, telling us not to listen to her that she's the devil. She's a monster. She's from outer space. And not only do you have that, but you have the entire room of people talking. So you have this cacophony of noise all coming in at the same time, one person whispering your ear saying these horrible things, and you're trying to focus on the person at the front of the room and follow some directions. And so it was an impossible experience. And it went on for about 30 seconds to a minute. And then the leader said, Okay, now stop, and everybody stopped. And you could just hear this reverberation in the room of what had been happening, and the tension of all the people. And she said, that's what the world is like for your person with schizophrenia, every day of their life. And it just, I mean, it made me want to weep. And it made me understand a lot of things like when I'm talking to Nick, and he reacts in a bad way or he ignores me or he just flinches away. It's like all this other stuff is going on.

And one of the things about schizophrenia is that it affects the filters in your brain that filter out sound, so that if you're in a restaurant and we're talking to each other, and there's all this noise and all these other conversations, we're able to sort of filter out that sound, focus on each other and listen to each other. With schizophrenia, generally, all the auditory information comes in at the same velocity and the same measure of loudness. So they're very sensitive to the environment, you know, rooms full of lots of people with lots of noises, and they're assaulted with the sensory input all the time. It just, the more I learned about it, the more terrible it sounds. But Nick doesn't talk about it. He doesn't even admit he hears voices. So it's very hard to know what his experiences

SS:What is your relationship with him like?

“In a terribly evil and destructive kind of manifestation, it tailors itself, it's different with each person”.

MF: We're very close. I'm his primary caregiver. And we spend, you know, he spends more time with me than anybody. He's more open and communicative with me than probably anybody, except maybe his sisters. But it's just that they are adults now so they're in their own lives.  A lot of times when we're together, it's just me rambling and him sitting there, but he likes to be with me. He likes it, we go to a restaurant and have something to eat. He likes to go into errands and do things like that. But you know, sometimes he doesn't talk at all. He's just somewhere else. Sometimes he's very engaged. Sometimes he'll call me on the telephone and start talking about old times or talking about ideas or things that he wants to do. And I'll swear to myself, he doesn't even have schizophrenia. He'll seem completely normal. It's the thing about this disease. It is bespoke for each person. It's not like diabetes, and this is how it is. And this is what you have for cancer and this is the characteristics of cancer.

“This one doctor that we see said: we call schizophrenia the disease of 1000 faces, it is completely different for each person”.

In a terribly evil and destructive kind of manifestation, it tailors itself, it's different with each person. So, you know, I mean, it's terribly frustrating as the loved one to see some people with schizophrenia seem like they've got a regular life and they're fine. And then Nick's life is so mitigated, so abbreviated and so narrow. And then I look at Nick, and I compare him to the people I see on the corner of the street screaming at people, and I think thank god, he's so much better than them. But it's like there's so many phases. This one doctor that we see said ‘we call schizophrenia the disease of 1000 faces, it is completely different for each person’.

SS: What's the dynamic of your family like?

“Serious mental illness is like a gale force hurricane that blows through your life. And anything that isn't firmly nailed down is gone”.

MF: Well, it's changed. It's evolved over the years. In the beginning, it’s you know, I've said this before, and I'll say it again, serious mental illness is like a gale force hurricane that blows through your life. And anything that isn't firmly nailed down is gone. So in a sense, it's this great equalizer where anything that's not important anymore, you just let go up. So there was kind of a nice lesson in that for me as a person of just letting go of the little stuff, I don't sweat the little stuff anymore. If there's not blood or fire, I don't get upset.

And so that was that was the initial thing, the way it impacted me was I'm going to save the family, I'm going to save the family. I'm going to save Nick, I'm going to fix this.  And that was my focus for many years. What happened to his sisters, his younger sisters became marginalized because when one kid is on fire, you don't have the attention or the capacity to pay attention to the other siblings. And I think that that's probably a pretty universal experience for siblings of kids with these serious mental issues. So that was rough. I feel like my daughter's didn't get the same mom that the two older kids got. Especially my youngest daughter, because she's very young when this started and for his middle sister, Lucy, who's closest in age to him, it was a terrific loss. It was. He was her mentor, he was her hero. He was her guide into life, and she lost him. And you know, she's 30 now, and she's just gone into therapy herself. And she told me she's just starting to finally deal with some of this, that it was something that she could just sort of compartmentalize, but it was I saw it, you know, I knew it, but you know, she had to come to it on her own timetable. It was a devastation and a loss and I don't think she'll ever really get over. For my youngest daughter, she had an easier time accepting how he was. She didn't feel the same sense of loss of a brother. Because she was so young when it all started. So out of the whole family, she's the one who kicks and screams and resists it the least.

“I would lock myself in the bathroom at night and turn on the water and cry because I didn't want them to hear me crying.”

She's able to accept it more because he was so young. But for her, the real damage was she really lived your childhood in the margins. You know, I mean, Lucy was older and already a teenager and, you know, had her own experience of it, but poor Rose was just sort of left to the wind, you know, and, and so each one of them has their own guilt and pain and loss and damage from it. You know, I'd like to paint some kind of pretty picture here, but it's pretty devastating and it's pretty damaging. One thing with Rose, and this will demonstrate the difference in her perception of all of this, is one of the things I used to do in the beginning is I  was really intent on keeping a good face for the neighbors for everybody. And for the girls also, I just didn't want them to know how much I was falling apart, which is ridiculous because of course, they knew and my advice to anyone would be, just be open about it because they know anyway. And so I used to hold it together during the day being pathologically functional, running a business, raising the kids doing all this stuff. And I would lock myself in the bathroom at night and turn on the water and cry because I didn't want them to hear me crying.

“My ideas of what the future was going to be, are just vapor”.

And one night I came out of the bathroom and Rose caught me. I was crying. I was busted. I mean There's no way I'm going to say I wasn't crying. And so she asked me what was wrong? And I said, I'm crying because I miss your brother. She said, What do you mean you miss Nick? Nick's not gone. He’s still here. You know, he’s not dead. What are you talking about? And I said, Yeah, I know, he's still here, but he's not who he was supposed to be. She looked at me right in the eye. She said, yeah, he is. It's just not what you thought. And that has, I mean, first of all, it's incredibly moving and painful. But it also is so wise. And it has informed me, and it's informed me ever since and it informed the title of the book, which is he came in with it, which is, this is who he is. This is how he was supposed to live, maybe it didn't seem that way, in the first half of his life, we thought he was gonna have this other life. But this is his life, and this is who he is, and we have to accept it. And we have to meet him where he is. And the sooner we can do that, the better we're all going to be. And so, and to this day, I'm still kicking and screaming against it, but I go back to that over and over again and just remind myself that this is who my son is, and my ideas of what the future was going to be, are just vapor, you know, what I mean? They're not something that's real.

SS: How has your husband's relationship with Nick evolved over time?

MF: It's a sad story and I'm sorry to say it’s another thing that doesn't have a happy ending. And it's not because of lack of love on anyone's part. His father loves him fiercely. It’s because of our, you know, what people are able to do and what people are able to bear. Nick and his dad, we used to joke that they were like John Lennon and Sean Lennon. They were inseparable or his dad Craig has a not great history with his own father and a lot of trauma and a lot of inherited pain that he carries with him. And then he had a son. And it was like he was going to fix everything by being the father for his son that he didn't get. And they were like, two peas in a pod. And, you know, since he was a little teeny boy and he would hang out with Craig in his studio and draw and paint with him. As he moved into his, you know, childhood years and into his younger teenagers, they would go on road trips together and see the country together, and they were both devotees of Bob Dylan and Craig would teach him about the beat poets and about art and about the 60s and the hippie movement.

“Like a person who's hungry and looking at a plate of food, but is too afraid to eat it”.

Yeah, they were just like a storybook. And when this all happened, it was really kind of more than he could bear. And for many years, he just again for many years, he fought against it, and he even would deny that it was mental illness. He would think, he's just lazy. And it sounds so awful. But it's not uncommon. It's not some freaky thing Craig did. It's a very common thing with men. Thinking, he's just lazy, he just wants to get attention. So there was that denial aspect of it. And that pulling away from the family aspect of it and what it's evolved to now over the many years and he's there for his son and he loves his son, but it is almost too painful to be close to him. And so, they're not close anymore. And it's heartbreaking.  It's heartbreaking because I see it from where I sit, and I see a boy, young man, Nick, who idolizes and adores his father, and I think would love to be closer with him, but doesn't get the chance. I see a father who's like, almost like a person who's hungry and looking at a plate of food, but is too afraid to eat it.

“We're a family and we're strong and we're together. And I am proud of that”.

Some dynamics like that it's hard to explain. So it's tragic. It's just tragic what it does. You know, I, again, I wish I could tell you a happy story. But on the other hand, it didn't destroy our family. We are a strong family and we love each other fiercely. And Craig and I have been together for almost 40 years. And we are a family in whatever damaged, you know, bizarre iteration. We're a family and we're strong and we're together. And I am proud of that. And I'm not proud of it in the sense that it's something that I've done. I'm proud of it in the sense that it demonstrates what real love is.

SS: I'm curious about your own self care. How did you manage, you know, taking care of yourself and battling your own emotions with everything that was going on?

MF: Well, I'll be honest with you in the beginning, I was in a lot of denial. You know, like I said, I was convinced I was going to fix it. In the first few years, honestly, the way I did self care was drinking a lot of wine at night, you know, we kept to the days and then I would lock myself in the bathroom and cry, and then I would drink wine and watch TV. I was drinking way too much wine for a while there. But it was my coping mechanism. Then I realized that wasn't going to sustain me.

One thing is I've always had a good exercise regimen and the time when all of this started, I used to do pilates and still love that. But the pilates was way on the other side of town and it was expensive and having a crazy kid spinning out of control and an absent husband, and also money and everything being taxed by the whole situation didn't lend itself to driving halfway across town and paying a bunch of money to pilates so I stopped doing that.

“It started to get into my brain and it started to make sense this idea of surrender isn't giving up, surrender is acceptance”.

Exercise is good for your emotions, it's good for your body. So I went to a yoga center, within walking distance of where we lived, and I’ve never been a yoga kind of person. I was never like, into the woowoo stuff, which is what I categorized yoga as being at that point. But I thought it's there. It's cheap. It's close to home, and I'll get some exercise. So I started doing yoga. And I sort of didn't listen to the teachers and all the, you know, yoga philosophy. I just thought I'll get in shape. But as I started doing it, all the things that these women were, and they were mostly women,  were saying it started to seep in, started to seep in and I started hearing what they were talking about.

They would talk about things like surrender, which is something that to my mind was a sign of weakness. You know, surrender is waving the white flag and giving up which I was never going to do. But it started to get into my brain and it started to make sense this idea of surrender isn't giving up, surrender is acceptance. Surrender is accepting what is and so then it started to be like this map where little lines are being drawn and connecting back to what Rose had said. It's just not what you thought, accepting what it is instead of beating your head against a brick wall.

“I can't change that Nick got schizophrenia and you know, it's hard. I can't say I have 100% acceptance, but I don't throw myself up against the cement wall anymore. And that's been a big change”.

Now I'm 64 and I live completely differently. And I don't mean what I do every day with myself other than I meditate and I practice yoga every day. But how I live in this world, how things affect me, how I process things, how I deal with things--It's been about completely rebuilding. It's been about just surrendering myself to what is unchangeable, which kind of goes back to, you know, the thing about “accept the things I cannot change”.  We try not to do harm to anybody else. And we have to accept things that are finite, you know, I can't change that Nick got schizophrenia and you know, it's hard. I can't say I have 100% acceptance, but I don't throw myself up against the cement wall anymore. And that's been a big change.

SS: What has been your experience managing the stigma and the misconceptions surrounding schizophrenia?

MF: Just to be really open, blatant and unreserved about it. I think that hiding is just going to hurt you. It's not good for anybody. It's not good for your loved one. And it's not good for you. So I think that it’s  important to be open. I don't think everybody is going to be out there being interviewed or writing books, you know, I mean, it's not what everybody's gonna do.

“I think that it's really important that those of us who have the inclination or the capability to tell our stories, tell them because the time for hiding away is gone”.

For me. I'm an art maker. That's what I've done my whole life. I make art. And it's always been painting. I never wrote a book before. But I felt like the universe had given me a story that I couldn't adequately tell with the paint, and also that it wouldn't be accessible to others in a visual art form. I really wanted to not make a guidebook because I don't have anything to tell anybody because each situation is different. There's no how to, but just this is what happened to me. You're not alone. You're not the only person. My story is different, but it's the same in enough ways so that you can see yourself in it. And I think that it's really important that those of us who have the inclination or the capability to tell our stories, tell them because the time for  hiding away is gone.

SS:What advice would you give to someone else, another mother, in your situation?

MF: Educate yourself, because knowledge is power, learn from books that are written by experts on the subject, be very wary about non mainstream stuff and I don't mean non mainstream in the sense of a holistic approach, that is a more integrative approach of dealing with mental illness by nutrition and lifestyle. All of that's great, but there's a lot of fringe stuff out there that you just have to be careful about because everything is presented now in the same format, and so you need to be careful. So I would say that is the first and most important thing. And then find some sort of practice in your life. You know, whatever it is, for me, it turned out to be yoga and meditation, which is the last thing I ever thought I would be doing. But some sort of practice that gives you the time and the space to learn acceptance, to learn how to accept and move through what's happened to you, because it's not going to just happen on its own. So whether it's something like yoga and meditation, whether it's therapy, whether it's whatever, find a way to come to terms with yourself. Don't think that it’s not important because it is and then forgive all your screw ups. Because it's impossible to do this well. You know, you can only do it through a series of mistakes and fumbling and picking yourself up. And so you have to forgive yourself.

“Even though this disease decimates lives, it could not quelch or stifle the intrinsic goodness of who Nick is”.

I did another interview, which clarified something for me. Somebody asked me, “what am I most proud of?”. I thought about it, I'm not really proud of anything. And I suppose in a general sense, I'm proud that I'm a good strong woman and I tried to do the right thing, but I mean, that's kind of the least I can do in this life. I'm not proud of any accomplishment in terms of this situation. If there's one thing I'm proud of in all of this, it's Nick. He has gone through what is arguably one of the worst and certainly one of the ugliest mental illnesses. Something that manifests itself in a way that steals goodness, devours love, leaves the person either warped in a horrible way or flattened in a way where they don't have that goodness, that juice of loving life that we all know, that means so much. So Nick got that disease and that disease that arguably could be called evil, you know, in how it manifests itself. Even though this disease decimates lives, it could not quelch or stifle the intrinsic goodness of who Nick is. He's still gentle. He's still good hearted. He's himself, even though he doesn't engage. He's not emotional in that way. He is his personality and everything is kind of flattened. But it couldn't touch his intrinsic goodness. And that's when I'm proud of and that's not anything I did. That's just who he is. And I'm proud of that.

I think that if you operate from a place of love, and I'm not talking about Hallmark cards, flowery love, I'm talking about fierce, tough wiring, you know, relentless Love, love as a verb. If you operate from that place, you're going to still make mistakes, but you're not going to do anything terrible. You know what I mean?

SS: So what prompted you to write your book, and what can you tell people about it when it comes out in June?

MF: I just had this overwhelming desire to tell the story. I think initially, it was about getting it out into a place because like I said, I'm an art maker, so I needed to take it out of me and put it in a place. So that was what compelled me initially, It enabled me to  sort out and come to terms with a lot of my own stuff.

“I think that writing the book, it was a reckoning. It was a reckoning for me. Me as a mother, me as an artist, me as a woman in the world, and me in my marriage”.

And that's another thing, just a little bit off topic of the book, but just in the writing of the book, too.  And this is something I would also say to other moms and other people is we just lie to ourselves, you know, and I mean, I spent so many of these years just lying to myself about so much of this stuff. And I think that writing the book, it was a reckoning. It was a reckoning for me. Me as a mother, me as an artist, me as a woman in the world, and me in my marriage. And, you know, obviously I never in a million years would have chosen to come to it in this way. Nick's illness has propelled me into being so much better of a person and living so much more real and honest of a life than I was before. And I'm grateful for that at least. I mean, it hasn't been an easy or painless process. But I think that if we're honest with ourselves and honest in our lives, the quality of our lives are gonna be so much better.

So I wrote the book and then it was so much work then I I had imagined,  and it meant so much to me because it also became a legacy of and for Nick. It's Nick’s story. It's less at this point about me, as It is about our family, and about Nick and Nick's relationship with his sisters and the world and his father specially. So it's a portrait of a family. And I just think that it will help other people, and it will resonate for other people. People will feel less alone and people will feel less stigmatized and less isolated and less afraid. If I had picked up a book like this 15 years ago, when all this was starting, it would have made a substantial difference to me.

“Obviously I never in a million years would have chosen to come to it in this way...Nick's illness has propelled me into being so much better of a person and living so much more real and honest of a life than I was before”.

So that is now mine and  Nick's legacy, Nick, this beautiful, incredible, talented human being who didn't get the future I had imagined for him. He got this future. I see through the miasma of schizophrenia and the mitigation of his life and the changes that it's made, and I see the sort of glowing thing of who he is. I'm wanting to get that down on paper.

SS: We can all learn something from your story, and see how inspiring and brave you are. If someone wants to find out more about you, where can they connect with you?

MF: They can find me at: www.miriam-feldman.com. And on there is a blog and a link to find my book when it comes out in June 2020.

“I see through the miasma of schizophrenia and the mitigation of his life and the changes that it's made, and I see the sort of glowing thing of who he is. I'm wanting to get that down on paper”.

Miriam Feldman

Miriam Feldman is an artist, writer, and mental health activist. She has four adult children, and her 33-year-old son, Nick, has schizophrenia.

Is Blood Truly Thicker Than Water?
Brave Anonymous
Writing
Learning to Persevere
Sara Tieu
Poetry
Intrinsic Goodness in the Illness with 1,000 Faces
Brave Expressions
Video Interview

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