What It’s Like To Raise A Son With Schizophrenia
This article is part of a series called “How to Human,” interviews with memoirists that explore how we tackle life’s alarms, marvels and bombshells.
Miriam Feldman likes to tell people that the list of red flags for serious mental illness — irrational behavior and mercurial moods — are the same list of behaviors for most teenagers, and it is the reason why it took her family four years to figure out her son Nick had schizophrenia.
In her new memoir, “He Came In With It: A Portrait of Motherhood and Madness,” which was published on July 22, she describes how when one child “is on fire,” the other siblings are marginalized and how hard it is to navigate a medical system not set up to support people with mental illnesses.
HuffPost spoke to Feldman via a Google Hangout in late June. This interview was condensed and edited for clarity.
Will you walk me through the diagnosis process with Nick? Because, it sounds like it was pretty complicated to actually get there.
It’s very hard in the best of circumstances to get to a good diagnosis and especially with mental illnesses. Also, once you veer into ones like schizophrenia and bipolar, because schizophrenia is a diagnosis of criteria. It’s not like you do a blood test and OK, this is what he has. So they just check off enough boxes and if he exhibits certain behaviors, then that’s what they call it. And it’s basically that with all the mental illnesses.
The thing that I always say is if you made the list of red flags for serious mental illness and you made the list of normal teenage behavior, you would have virtually the same list. They’re all mercurial and hostile and irrational and … I would look at him and I would look at his friends and I was like, “OK, they’re all nuts.” You know what I mean? “This too shall pass.”
But then it didn’t pass with Nick. And with us, the wake-up call was when he cut his wrist and at that point I could not normalize it any more. So as far as the path to a diagnosis, it was meandering. First we addressed it as drug abuse and sent him to rehab and a therapist. Then it progressed from there to anxiety and then depression, and this is over a period of years from, say, 16 to 20. Then eventually when he was 18 or almost 19, we got bipolar, but even then they told me, “This is probably not the end of it.”
Then eventually when he was about 20, they said, “Schizophrenia.”
Streets and prisons have become the defacto mental health providers. And my position on this is that it is not good enough. These are our children. These people deserve a place in our world.
Nothing is perfect, of course, but why is it so hard to diagnose mental illness?
It’s hard because the system is broken. I’m a person who’s privileged; I have a college education, I have a reasonable amount of money. I’m not rich, but I’m not poor; and I’m a pit bull — I don’t give up. And even with me at the helm, we almost lost him in the shuffle many times. To get him hospitalized, to get them to take it seriously, to get them to listen, and then when they finally will acknowledge that he’s sick and they give him a diagnosis, there are no beds, there’s no treatment. One of the big problems with schizophrenia is that the medical profession regards it as an act of stabilizing the bad symptoms with medication, and then they’re basically done with them.
OK, so now he’s not a problem to society. He’s not smashing things or running through the street screaming. So this is a success story; we’re done. What I’ve been fighting for, for all these years of his adulthood, because he’s 34 now, is continued treatment. He needs something to propel him into the next level. Because for me, it’s not OK that he sits in a dark apartment all day and doesn’t make a problem for society. I’ve evolved in this and in the beginning I used to worry about things like stigma. Now veterans like me with kids with serious mental illnesses, we all laugh at stigma. I want research, I want new medications, I want beds in the hospitals. There hasn’t been a new medication for schizophrenia in 35 years.
Streets and prisons have become the de facto mental health providers. And my position on this is that it is not good enough. These are our children. These people deserve a place in our world. We’ve created this world, this society, this structure where there’s no place for them. We’ve decided they don’t get to be here with the rest of us — but they’re human beings. They have the same rights that everybody else has and to marginalize them and shove them into dark corners, it’s not acceptable.
When you drive down the street and you see these seriously sick people screaming on the street corners or rolling around in the gutters, that’s not because that’s what they’ve chosen or that’s what their moms have chosen for them, it’s because they had no recourse. And then you have a son like mine who sits alone in a dark apartment all day and the system calls that a success. I don’t want to accept that.
You have described yourself as a pit bull, and in some ways Nick is lucky to have you as his mother because of this quality. But were you ever angry about how hard everything was? Because you too were going through a trauma, but in the book you never talk about that.
I had my moments. In the beginning I was out of control; I was drinking a lot at night, and I was in so much pain. I was doing whatever I could to just move forward. The first few years were bad, but now I’m what I like to call pathologically functional. Whatever happens, I’m the Energizer bunny; I pop up and I deal with it. But that doesn’t mean it doesn’t take its toll — it doesn’t mean I don’t feel angry, it doesn’t mean I don’t feel pain. It doesn’t mean I don’t feel grief. Personally, anger is not an emotion that I find particularly useful, it’s just how I’m wired.
A few years ago I just woke up one morning and I said, “No, I haven’t fought this hard and worked this hard and gone through what I’ve gone through to just throw in the towel.” And I don’t mean throw in the towel on success, I mean throw in the towel on joy.
Because it was just like this capitulation of, “OK, there’s just not going to be any more joy. This horrible thing happened to Nick and joy is done for me.” And I just decided, “Screw it, joy isn’t done for me.” And I became a writer, I wrote a book, I have these beautiful children, including Nick. I travel all over the world, I advocate for mental health. I’m turning 65 in October and I’m freaking on fire.
I’m starting new paintings, I have all these ideas for paintings. I’m already starting another book. I’ve never felt this alive and this full of purpose because my purpose is I’m an artist, I make art. And I really believe that art is pivotal to fighting the despair and the horribleness that we’re seeing around us right now. That’s my job, that’s why I’m here, and now I intend to be around another 25 years to do it. I’ve got stuff to do.
The cover of Miriam Feldman’s new book, “He Came In With It: A Portrait of Motherhood and Madness,” features a painting made
The cover of Miriam Feldman’s new book, “He Came In With It: A Portrait of Motherhood and Madness,” features a painting made by her son Nick when he was 16 years old.
You are a painter. Could you talk about how you came to writing?
In the first years, I remember sitting in my living room in my beautiful house in Hancock park in LA, looking through the big glass window of my house and seeing people walk down the street and feeling like out there was this whole other world and inside, behind my door was this dirty, shameful, ugly thing. And I wasn’t part of the world anymore. And I was grappling with all this horror and I couldn’t talk to anybody — I felt like I was on an island.
So then somewhere along the way, I just decided first of all, if I wrote this story, maybe I can make some sense of all of it myself. But also if I wrote this story, I would be putting out into the world what I wish had been there for me when I was going through this. Because I remember talking to people and they are like, “Oh, so and so, she has a son with this problem. She’s like getting on the phone with these strangers.” And just wanting to gobble up these anecdotes and this idea that I wasn’t the only one. That’s what took hold. Now, that was like 10 years before I actually started writing. I kept thinking, “Okay, I need to journal because I’ll remember this. What I ended up doing after 10, 15 years was about 45 pages of drunken ramblings, and that gave me an armature.
I haven’t fought this hard and worked this hard and gone through what I’ve gone through to just throw in the towel. And I don’t mean throw in the towel on success, I mean throw in the towel on joy.
So one day, about five years ago, my husband — by then we’d moved up here [Washington state] and we’re out in the middle of nowhere and it’s winter — he said to me, “If you’re going to write a book, go in the room and write the damn book already.” I thought, “You know what? I’m going to.” And I went in and I sat down and I started writing and I spent a whole winter writing, and I would just get up in the morning and I would put in eight hours and I would write. And I learned how to write. I started just spilling everything out. At first I really didn’t remember very much, but what happens is you start writing and then it starts coming back. I learned this amazing lesson in doing this, all these things that you think you don’t remember, they’re there.
Every time I had a new memory I would stop and I would jot it down on a Post-it and I would stick it on the wall and I wouldn’t stop the writing. Then every morning I would get up and I would organize all the hundreds of Post-its. And I was just lost in it for months and months and months. And at the end of that long winter, I had what I thought was a book. I found out that wasn’t a book, it was only the beginning because then I workshopped it and edited it and worked with editors and all that. And finally, I got to the point where we sent it out, but it was an amazing experience to do something completely new at age 60.
I was wondering if you had your family read the book before you sent it out?
At a certain point, I decided this has to come from truth and not my truth. The truth. I’m not a believer in my truth. I think that there is a hard line between what’s true and what isn’t. It had to come from truth and I have to not be afraid. I had to be braver than I’ve ever been because, as you know in the book, you see I spent a lot of my life trying to keep up this facade and this image of trying to fit in and all of that.
Once it was done, I gave it to all three girls to read, and Craig [my husband], and I told them, “If there’s anything in here that you don’t want me to put in the book, tell me and I’ll take it out.” None of them had anything. Rose said to me, “Mom, there’s a lot of things or there’s some things in this book that I remember very differently from how you portrayed it, but this is your book and it’s your experience of it and it’s not my business to touch it.” Isn’t it amazing?
This story is very much about what happened to your son, but it is also about what happens to siblings who are caught in the middle of the trauma. Could you talk about that?
One of the things that I’ve come to realize, especially even just recently, is the damage to the siblings. You’ve got one kid who’s on fire, and what ends up happening is the other siblings just getting marginalized. If I had it to do all over again I’d find a way to put in place a support structure for the siblings.
I should have assigned each girl an aunt, or a good friend of mine who could have picked up the slack. I think that’s a piece of advice that I’m starting to give people.
I understand Nick is settled in Washington near you. What was it like for you and him during the past few months of quarantine?
Well, it’s funny because I was talking to [my daughter] Lucy on the phone when it first started, and I said to her, “Who are the two guys in America who are the poster boys for quarantine behavior and haven’t had to change your lives a single bit?” And she said, “Dad and Nick.” My husband loves it. We live on the top of a mountain here and he’s not very social. And for Nick, it’s been interesting. We have a setup where he has DHS caregivers now who come twice a day and give him his meds. And it’s so wonderful, it’s such an incredible thing for Nick, and also for me to not be in that role of the caregiver, a Nurse Ratched kind of a thing.
He didn’t even really know about it back then. Now he knows about it, but Nick is kind of in his own little world. He’s got a sprinkling of OCD with his schizophrenia; I doubt if he’s touched a doorknob in 10 years. So I don’t really worry so much about him and COVID because he doesn’t talk to people. He doesn’t get close to people. And I decided that rather than put some big head trip on him about it, I just lightly told him. So he knows there’s COVID and he understands that that’s why he hasn’t seen his dad in months. My husband is 70 and he’s got a heart condition and he’s really afraid of getting COVID. And Nick understands that and he understands that’s why things are closed but not much causes him much stress. You know what I mean? He kind of is in the moment, and he seems fine.
The end of the book sort of ends on a really hopeful note with Nick where he could either be spiraling or coming out of something. When was that written? Where is Nick now?
The end of the book was written, I would say two to three years ago, he has been hospitalized twice. He had a terrible psychotic break. He’s trashed his apartment. I mean, he got his hands on some medical marijuana and got psychotic. I mean, there’s a lot of bad stuff that happened, but it’s just one thing at a time and you deal with each crisis as it happens. Right now we’re getting ready to change up his meds to clozapine and see if that helps because he’s 34 now. I decided, he’s halfway through his life. If there is a drug that maybe could actually make a difference, why am I not giving it a try?
So, it’s scary to be starting in on this again and you have to monitor this drug very carefully. The reason why it’s out of favor is there’s a rare blood disorder that can develop that actually can be fatal. So, you have to monitor it. They have to have a blood test every week. It’s a big pain in the ass. That’s why doctors don’t like to prescribe it, but it actually has a lot of hope.
That’s what we’re getting ready to do now. He’s OK. He lives in his apartment. He’s recently started painting again. That’s an amazing thing.
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