Edythe - NAMI-NYC

I’ve got 3 brothers who are diagnosed with mental illnesses. One of my brothers, who is diagnosed with schizophrenia–probably 10 years ago–spent so many years on the verge of homeless, filled with a lot of despair, really misunderstood by our community. Finally, he was able to stay on his medicine, get disability money, and with that money go to college. He just graduated in May, and now he has a really great job! I was just blown away. I always think about surviving, but really I want to see my brothers thrive. And he is, he really really is.

He just called me and we were chatting. I said I was going to go to NAMI-NYC to be interviewed about my story, and he asked, “Are you going to tell them about me?” I asked, “Well, can I?” And he said, “Yeah. Tell them about how when I decided to stay on my medicine I’ve been able to accomplish so much.” It was really moving. I’m glad that he’s so proud, and that now the schizophrenia diagnosis is not as scary, because he’s learned how to manage it. For sure there are ups and downs, but…things get better. I wasn’t always sure about that, you know, I really wasn’t…

When NAMI-NYC came into my life, it was absolutely an answer to my prayers. I had felt so overwhelmed. All of that worry was immediately lifted.

What brought you to NAMI-NYC?

I had spent five years with brother after brother getting diagnosed, and going in and out of the hospitals, and I didn’t know what it all meant at first. As I started to understand it, I started to talk about it. I was at work on a photoshoot, and I started to confide in the makeup artist about my family’s struggle. She shared with me that her sister was living with mental illness, and eventually took her own life. Then she mentioned NAMI and said, “It was really helpful for me… you should look into it.” But then I didn’t come for a long time. Basically until I hit rock bottom.

I grew up in a community that doesn’t understand these illnesses, and so they had really alienated my brothers and my family, and I was so angry about it–it was time to do something because I was feeling so helpless. So I went to a support group–Siblings and Adult Children–which was helpful. I just started to talk a lot about the situation with my family, and in talking about it, I got introduced to Barbara Ricci, one of the NAMI-NYC board members. She was kind enough to take me under her wing. In getting involved with NAMI-NYC, the helplessness really went away. Because even though some of the work I’ve done isn’t directly serving my family, it serves the cause and it serves me, so it’s been healing for me. That’s the big thing, for me to have a place where I feel like I can take action. Because I got involved with the organization, my mom took Family-to-Family. I came to my first support group in May 2013 and was involved with the Young Professionals Advisory Board (YPAB) by the spring of 2014.

Tell me about where you were brought up and what how that culture views mental illness. Is shame a part of that view?

I grew up in a one-stoplight town. Prior to my first brother’s episode, we did not talk about mental illness, at all, nobody. We didn’t talk about it in health class, in church, at home, my friends didn’t talk about it. So when my first brother had his episode, we had no idea what was happening. We thought he was on drugs, and we thought he was having a really bad trip, for a really long time. It’s amazing to consider the ignorance.

I  have 4 brothers, and all four of them have been in and out of psychiatric hospitals and three of them have a diagnosis. The community started to notice, because there was a lot of psychosis. One time one of my brothers was totally out of his mind having an episode. We had decided as a family to let him go through it a bit, not to hospitalize him, because it was very traumatic to go to the hospital, so we were doing that for him. We talked to him about it prior to the episode starting. As the time was passing, he’d be in the yard, or walking down the street, and the neighbors got alarmed, which I do understand…but then people would go to Facebook and were saying all sorts of horrible things about him that were totally untrue. And people kept calling the cops, as if being schizophrenic is illegal. Being mentally ill is not illegal, and it’s not a choice. That was really painful for me, to feel like we don’t belong in this community anymore, because they couldn’t understand. I think in the age of the internet we have less and less excuses to not understand.

I also feel like it’s part of my purpose, to bring awareness into the community. As you talk about it, people start to tell their own stories. So I can’t say the climate in the community has changed towards these illnesses, but I’m sure they know now that it’s an illness. I just think it’s misunderstood. And it would have been misunderstood by me too.

I remember when I went to my first support group they were asking what’s the most pressing issue for you. I was talking about the way the community was treating my brother, and someone in the group said, “Stigma.” I’d never used the word stigma, but I thought, “YES, stigma! Yes that’s exactly what it is!” Unfortunately, even when he was on his medication, outside of the episodes, he still felt very uncomfortable in the community. My mom decided to go speak with many of the families that kept calling the cops, so that smoothed things over, but I think it was hard for everyone…the whole community.

What was your first experience with NAMI-NYC like?

The experience of sitting across from someone and saying, “My brother’s having an episode, my community doesn’t understand…or, my brother just got this job and he’s been through all this,” and people saying, “I know exactly what you’re talking about.” Here people know exactly what I’m talking about. We can celebrate the good times together and come together when it’s hard, which it is sometimes, and that’s what’s so special to me.

What was your reaction when your brothers were diagnosed?

I didn’t know what that meant. I didn’t know the implications that kind of diagnosis could have on a life. So I think when I first heard about it–because with each of my three brothers, the diagnosis came quickly after their first episode, so there wasn’t a long mystery–it wasn’t as if I was relieved because I finally understood my brothers…actually I was kind of confused. What does this mean? And as it kept happening, there was a deep sorrow. You don’t want the people you love to be sick and you wonder, what does this mean about their future, their dreams and everything they hoped they would do?

How did you feel when you found NAMI-NYC?

When I first found NAMI-NYC, I had been on my knees, praying to God. I was in so much pain. I was so hurt by our community, and grieving my brother’s sickness. I thought he could end up homeless. Suicide is also obviously a concern… there are so many sad things that can happen. And so I was praying a lot at that time. “God please, what am I supposed to do? I feel so overwhelmed.”

When NAMI-NYC came into my life, it was absolutely an answer to my prayers. All of that worry was immediately lifted. I knew, this is what I’m supposed to do. I remember especially the first year I was involved with the organization, on Thanksgiving when you go around the table and say what you’re thankful for, I said, “I’m thankful for NAMI-NYC. That’s really what I’m thankful for this year.” At the end of the year I was writing down what I was happy about with the year prior… I was happy about NAMI.

It was just such a relief. It’s a big deal for somebody trying to navigate this thing by themselves, and also in explaining to friends, “My brothers have this thing, this is a big part of my life. This is something I think about every day.” So to finally to find a community where they understand… you know, thank God.

At that time I already had three brothers with diagnosis. When I went to the support group, there were several people in the group who had more than one immediate family member living with a mental illness. That was a real relief to me–this isn’t just my situation; maybe this is more common than I realized, which of course is helpful. I was also grateful that I was finally doing something about it, about everything that was going on inside of me. I wish I had come sooner. I had to get so sad about it before I did but I don’t think that has to be everyone’s experience.

Though, I feel I have an understanding of why people never get around to coming… I think when you’re dealing with the illness, and especially in the line of fire, it’s so much work already just to manage. To do the hospital, to do the doctor, the medicine, to just wrap your head around what’s going on… sometimes it feels like all you can do is be in the struggle. But there absolutely should be room for different kinds of healing work. I was so wrapped up in what was happening, it was hard to look outside of the experience and see that there isn’t only one grim choice.

When you love people, their pain is your pain. I’m really empathetic, but I’ve realized, you can’t totally feel someone else’s pain, it’s not possible. As a sibling, it’s not a little deal, you know… it’s a big deal, it’s really shaped me. It’s not directly my illness, but it is my illness, because I love these people. I’m naturally quite hopeful. But then maybe your hope waivers, or you get overcome with sadness about the reality of it… but the question I ask myself is, can I be sad and hopeful at once? Can I honestly grieve, and feel how this is, and still have hope? And actually there is room for both. I look at my brother and I can’t believe how his life has changed! So there’s a reason to keep hopeful.

What have you gained from NAMI-NYC?

Community. Relief from the question, “What am I supposed to do?!” I think that’s the way a lot of us feel when our siblings or parents are sick…what am I supposed to do?

How has NAMI-NYC changed your relationship with your family?

Coming to NAMI-NYC was an acknowledgement of my own pain around the issue, and by acknowledging my pain, I can acknowledge other people’s pain more. I can connect with other people more deeply. I can look at these issues more honestly than I could before. I think prior to coming to NAMI-NYC, there was an element of delusion.

How has NAMI-NYC changed your life?

I literally felt like I was saved. It was an answer to my prayers. And I am so dedicated to talking about it. As soon as I got introduced to NAMI, I had a dinner party at my house because I wanted to do the “I will listen” campaign. So I invited 20 people over and I made them dinner, and the deal was they had to make an “I will listen” video. So I asked all of them, “How many of you have talked about mental illness ever?” None of them really had. After we had this party, there was another event, and there were conversations everywhere! Everybody could relate to this issue in some capacity…we just weren’t talking about it before that. It’s wild to me that there are still some people that don’t get to talk about this stuff. It just gets so normal to you…but that’s why I have to talk about it, that’s why it has to be uncomfortable–it’s not uncomfortable for me anymore, but you know… The first time I spoke about my brother in any kind of public capacity–not a support group–I was crying. But now that I’ve talked about it enough, it doesn’t have that same grip on me. It gets a little more normal, a little more comfortable. There is still sadness but it doesn’t ruin my day. It bears less weight. I’m absolutely positive that’s happened because I plugged in to a community.

How do you feel when you walk in the door at NAMI-NYC?

I think you come in feeling a little sweaty-palmed, but then you talk to someone and realize, “Oh, yeah, they get it,”…and so, I feel relief. And love. Love’s a big word… But yeah, love.

Watch Edythe’s 2014  #IWillListen video: https://youtu.be/qLq1a-cjXzQ