John

What was your reaction to your son’s diagnosis?

When people get a diagnosis for someone they love, they want to know, “What’s the medicine that’s going to make this go away? How can we fix this right now?” I think that’s part of the NAMI mission—to help people understand that this is an ongoing struggle. It’s something that you can manage, and you can get help for…but it’s not something that you can wave a magic wand and suddenly your loved one stops having problems. I think it takes a while to learn that. So, it was very hard, and it was ongoing. But getting a diagnosis is also the point where you can start to learn about the illness. For me, learning about the stages of the illness, what to expect, how to communicate with somebody who’s going through an event, how to deescalate things that sometimes people are afraid of when they’re having these kinds of episodes…a mental illness can be so much pain for the person in it. This was all very important for me and my wife to help our son.

When my wife and I first saw our son, and he’d been hospitalized, we couldn’t recognize him… it was like seeing a different person. And he was in such agony. But he was also saying things that were so foreign to anything we’d heard him talking about before, because he was in a psychotic state, he was having a delusional episode. It’s so painful for parents—or anybody—to see something like that. It’s frightening, because you really feel helpless. After I came to NAMI-NYC, I decided I wanted to help people not feel so helpless. To help them learn that there is information out there, there are things you can do, but you do need to see the person behind the illness. One of the very important things that you learn from Family-to-Family is how to be empathetic. To see the person and separate the person from the disease. Sometimes the disease can really be overwhelming. It can be overwhelming for the person who is suffering.

So the next part of my journey was when I decided to become a teacher. This was my way to give back. NAMI-NYC provided the first place where my wife and I were really understood as family members who love somebody who is going through this. Who weren’t going to abandon him, and wanted to help him, but needed the tools to do it. Since NAMI-NYC gave that to us, we wanted to pay it back, so I became a teacher of the Family-to-Family course. Every time I teach it—and I taught one this week—I learn something. The curriculum is so good and so rich and so full of valuable information.

The other thing I get out of teaching is seeing the light bulb go on for other people, seeing family members—adult children who have a parent, mothers and fathers, siblings, people who are married to somebody who has developed a mental illness, like serious depression or serious psychiatric disorder—seeing the silent pain that these people go through, and then being able to talk to them about it, and giving them the language to talk about it, and then the language to talk to their loved one, is really really rewarding.

Every time I teach that class—and there’s usually 15 people in the class—I hear people say, “This has transformed my life. This has changed my relationship with my son, or changed my relationship with my husband.” Just this week I was substituting for a class and rode down in the elevator with someone who said to me, “This has helped me so much.”

It’s really rewarding…in terms of helping families who are dealing with this, and helping them understand the stigma that they’re under, that the pressure they’re under to try to keep everything together and at the same time make it seem like everything’s okay when it’s not…it’s a terrible terrible burden on families.

Tell me a little bit about how you were brought up in, and how that culture views mental illness. Was shame a part of that view?

My mom has been gone for thirty years. If you could talk to her today, she would get so many of the things that we do. But she would not believe that people are getting together in Central Park and 1,000 people are going to run for breast cancer. She would say, and I can hear her, “Why would anyone do that? That is such an embarrassment, so humiliating, why would a woman do that, why would a family do that?” Times have changed, and we understand that breast cancer is not something to keep quiet about. Unfortunately, with respect to mental illness, people still feel they shouldn’t talk about it. That it’s a secret in the family, or something to be kept just between a few people…and that is the single most dangerous thing for everybody. It’s not good for the person who suffers from mental illness, and it’s not good for the family.

So I began to talk about my family’s experience with mental illness. I felt it was my responsibility to talk about it in the workplace, and to talk about to my friends, because how can you have something that’s so painful and so big go on in your life, and then go to dinner with some friends and not talk about it. It’s lying. You sit there and try to pretend everything’s fine…but it’s not fine. Doesn’t mean you have to cry on everybody’s door, but you can’t keep that a secret. What I learned is as soon as I began talking about it openly and comfortably, at least one out of three people would say, oh, my aunt, my son…so many people have dealt with this problem.

In the workplace it should be discussed. You don’t not tell your boss that your wife has breast cancer—you say, “I’ve got this thing going on,” and people support you, and there are resources…well, that’s how it should be whether you have depression, or someone in your family has depression or schizoaffective disorder or bipolar disorder. These are serious things that families have to fight, and we should be open about it. But most people don’t talk about it. So one of the things we really stress in class is if you’re not talking about it openly, you’re not doing yourself or your loved one any favors.

The stigma in this culture is big. One of the things I say about stigma is I didn’t realize how easy it is to fall into it. When I took the Family-to-Family class, I thought, “I just want to know what to do. I don’t want to talk about advocacy. I don’t need to be an advocate. I just want to know what to do to help my son.” I finally realized, what to do to help your son is to talk about this. That as a culture we need to create places where it’s safe for people who have mental illness to talk about it…because most people who suffer from mental illness are isolated and they’re isolated in part because there’s no place to talk about what’s going on.

What was your first experience with NAMI-NYC like?

I was blown away. In that first class, one woman began to cry. She was trying to explain something about her family, and she started to cry and the instructor said, “Go ahead and cry,” because the woman kept saying, “I’m sorry I’m sorry I’m sorry…” The instructor said, “You don’t have to be sorry. Go ahead and cry…because this is a catastrophe.” I’ll never forget the note that hit with me and with everyone in the room… Yes, this is terrible. It was the first time anybody said anything to us that recognized the gravity of the situation, and the impact on this family, and on all of us…and I always appreciate that. It was, “We’re not going to sugar coat this. This is a catastrophe.” I felt understood… and I felt deeply this is where I need to be, where people can see that, and openly say that.

Did you experience a difference dealing with professionals versus peers?

Medical professionals that I spoke to were all very caring and helpful and concerned…and at the same time, didn’t have time to really spend with my wife and me, and so we had nothing to grasp onto until we had peers to talk to…until we had NAMI-NYC. As my wife often said, we’re both college-educated and we’re both smart, but this is like nothing we’ve ever ever ever faced. We really felt in the dark. They don’t have time, especially in the hospital setting, to help Mom and Dad figure out what to do. That’s why I think it’s essential that they say, “You should get some education on what you’re facing. You should go to a NAMI class. You should know that this resource is there for you, and I highly recommend it.” They have a lot of power in that moment… you know, if the psychiatrist in the psych ward had told us to do anything we would have done it. He was a particularly good guy, and he also knew that the diagnosis was going to take a long time… we couldn’t figure out why we can’t get a diagnosis. But it takes time, you have to see how the disease progresses.

At the time we had very good psychiatrist who worked with our son, but their training is focused on the patient. They helped us, they were very attentive, they would give us time on the phone…but they did not really have, in my opinion, the educational skills to know how to reach us and how to reach us as resources. One of the things we teach in the class is, you are the best resource for your loved one. And you need to figure out how to communicate with the medical professionals in a way that doesn’t violate their ethical code, or your son or daughter or whoever’s privacy, but you can do that. And if you can’t do it, find another doctor because there are many good psychiatrists and psychotherapists out there. Yes, you can send me a long email once a week, telling me what you’re observing, and it’s extremely helpful…and I’m simply going to say thank you. Or maybe I can give you more than that, but you should always be able to tell the doctor anything. My son can go into a 45-minute session and hold it together and if he wants to, not say the truth of what’s going on, and so it’s very very important that there be a relationship between the doctor and the family, and then that it be a productive, strong relationship.

Did you have an “Aha!” moment?

When I realized that if you as the parent, or the caregiver, change the way you’re talking, change your communication style… you can have a much bigger impact. So I stopped lecturing my son. I stopped telling him what he needed to do, and I started really listening. One thing I learned in the class—and my co-teacher always stresses to everyone—is the problem with all communication is that very often we’re listening with the intent to answer, but that listening with the intent to understand what someone is going through is a different thing, it’s a different set of muscles. In the Family-to-Family class, I learned how to listen to my son. What that did was allow the relationship to flourish and to improve. What you’re really trying to do when you communicate with somebody who has a brain disorder is to protect the relationship, because without the relationship you’re not going to get anywhere. The “Aha!” moment for me was when I realized I’m not going to be able to control his path to health. I’m not going to be able to make him take the medicine. I’m not going to be the policeman on this. It’s very very hard for people to learn how to do that, and to become comfortable doing that. So for me, I’d no longer let myself think about pushing drugs on him. He takes what he takes, he’s pretty honest about it to me now—before he used to lie about it—and we work together with what we have.

Has NAMI-NYC changed your relationship with your son?

NAMI-NYC has changed the relationship that I have with my son for the better. I know it has. Because as I’ve tried to stop telling him how to recover, I’ve learned to empathize with his recovery and how hard it is. There’s a whole workshop in Family-to-Family about empathy…because it’s really important to realize that as difficult as people sometimes are when they are suffering from psychiatric problems, they don’t want to be. Nobody’s trying to be difficult. It’s the world they’re up against. It’s the things they lose… all the things in their lives that they have to struggle with. My relationship became better when I learned those very specific concrete tips, and took them to heart.

What it really allowed is a lot more love in a relationship, and empathy and understanding in the relationship…and it created room for dialogue. And I don’t mean to overstate it; it’s not like my son is always coming to me and talking to me…but it created the room in our family—and my wife is a big part of this too—to discuss things.

The other thing I would say is in very practical terms, NAMI teaches you not to shy away from asking the hard questions, but how to ask them in the right way. Have you ever been thinking of suicide? It’s very important to have that discussion with somebody, and we’ve had that discussion, and we’ve become very comfortable when my son has been depressed with asking where he is on the scale, and he’s become very comfortable letting us in and letting us know, no I’m not, or yes I am, and just how he feels. That has  allowed us to talk with him about his feelings in a more comprehensive way, so that he feels when he needs to, he can turn to us.

We’re much more at a place of managing his illness these days. He’s not been in the hospital for many years now and that’s a big achievement. He’s become very good at figuring out what the stresses are in his life, what he needs help with, so that he doesn’t get into an episode, and so his sickness doesn’t become acute.

How are you involved with NAMI-NYC now?

I’m a member of the NAMI-NYC Board, so I go to board meetings, I’m on the communications committee, and I still teach the Family-to-Family course. I think it’s really important and I enjoy it so much. And I enjoy being part of an organization that helps so many people—I see it transform their lives in a matter of weeks. I want to help NAMI-NYC grow, and be part of the next phase, which is really wiping out the stigma of mental illness.

I want people to understand that this is a place that really cares about people, and that this is a place that really helps people. We really need to have a much clearer perception of what people need when they are suffering from these illnesses and how we can intervene and ways to help them. And help the families who are dealing with this. One of the things I always say in the classes, when your loved one is diagnosed with a serious mental illness, nobody comes over with a lasagna. We need to be a kind of society where that’s what happens—where every church group, every Scout group, any outing where people are with other community members, that there’s a sense that we’re going to help this family because they need some support right now and we’re not going to keep away from them and they should know we want them to come forward.

I’m very happy as a Board Member that there’s leadership focused on how to make mental illness in workplace something  people can talk about it, can get resources for it, and get support. And get to know what NAMI is. I think people in the workplace should know that there is an organization where they can get resources and support.

What does it feel like to walk through the door as of NAMI-NYC now?

Oh, it feels great! Whenever I come into the office there’s so much activity going on and there’s an energy in the place.

Tonight I’m here and there’s going to be public education event about how to plan for the future for your loved one. One of the tough spots for parents in particular is they’re really worried about what happens when I go or what happens as we get older… how do we prepare for that? And in the other room there are people who are in the Peer-to-Peer class, who were talking about what it’s like to live with a mental illness. It’s great. It’s a really good thing. I wish we had community centers like this all over the City.

Is there anything else you’d like to say?

It’s heartbreaking to see what it does to a parent to see their son or daughter go through this kind of thing and nothing can prepare you for it… so if you know somebody who is a parent who is wrestling with this, give them a hug, give them some support, give them some sense that you understand, or you care about what they’re going through. Because it’s very hard to go to work every morning and be worried that somebody you love is having the worst time of their lives, and it’s very hard to do that for a long haul, and sadly because of the nature of these illnesses, there are times where things get very bad for parents and their kids. It’s good to know that NAMI exists, and it’s good to know that there is a place for them to go and talk about this and get skills. For me I think the most difficult thing in life was to see that I couldn’t make it better right away. I couldn’t fix the problem. Any parent would know what that’s like. To see your loved one in such isolation and so troubled, and not be able to fix it… it was really bad. And to see the impact on the other members of the family. It’s a full-time job to try to navigate your family through these things. Whatever can be done to support people who are supporting others…it’s really important.