Deniece - NAMI-NYC

When my daughter Lucy was first diagnosed with bipolar disorder, I was in shock. I was confused, I was angry, I was hurt. I didn’t understand her behavior. The school would call and say come and get her. Then they called 911 and had an ambulance take her to the hospital.

She was in the hospital for almost one month. That’s when she got her bipolar diagnosis. The doctors said, “Here, she needs to take these pills, and find her a therapist.” But they gave me no information at all about what bipolar is, and what was happening to my daughter.

Tell me what brought you to NAMI?

I searched on “bipolar disorder mental illness”, and NAMI popped up first.

I’ll never forget what the person who answered NAMI’s Helpline said: “This is not your fault, and this is not your child’s fault.” That was the first time someone said that to me. Within 24 hours, I had a Parent Match (now Family Match), where a parent is matched with another whose child has a similar diagnosis.

“Whenever you need me, you can always call me.” She gave me sites to look at and lists of support groups. “Whenever you’re ready, you can come to a group.”

Finally, after a few months, I started coming to the Parents of Children and Adolescents support group.

When I walked in the room, I had such a feeling of relief. I had felt so alone. When I saw 15 other parents, going through the same thing, I realized I wasn’t alone.

Then I took NAMI Family-to-Family. The biology of the brain class was the most helpful. I could finally understand why she was acting that way. How the meds work. How to set limits with her, how to talk to her.

After about 6 months of volunteering, I had become a Parent Match parent too. When the parent advocate left her job, I applied for it. And here I am.

[At NAMI], I felt good, felt supported, felt listened to. No blame, no judging. I felt accepted.

Why did you keep coming back to NAMI?

I felt good, felt supported, felt listened to. No blame, no judging. I felt accepted. A part of a community that could make a change, make a difference. When I would come through the door, I’d feel like, “Yes, I can do this. I can make a difference…even if only for one person.” It felt really good, and I wanted to keep feeling that way. It energized me. Even if I had to go home and deal with issues with Lucy, I knew I had NAMI.

In 2008, NAMI Basics was just rolling out. I was one of the first three teachers to get trained to teach the class. We had 22 parents in our first class—that’s how big the need was.

What makes NAMI different than other places?

The fact that it’s a peer-run organization. It’s family focused. Lots of empathy and support. I never got that anywhere else, for me or Lucy. We’re doing it from the heart, because we’ve been there. We want to help people have the tools they need to make their path a little easier.

Did you experience an “Aha!” moment at NAMI?

Even though I was a Basics teacher, I took the class. That’s where I found myself and my calling. When we went over what brain illness looks like, it really sunk in. This is what I’ve seen in her—and other family—for so long. Rather than a burden, it started to feel like a mission. And I knew there was a broader community I can help.

How has NAMI changed your relationship with your family?

It changed with Lucy. Brought us closer. I listen more. Give her space to communicate more. I learned to step back and give her space. Learning to let go. And I’ve learned self-care! She knows if she needs me to call me, but I don’t have to check on her.

What does NAMI mean to you?

I can’t see myself not working at NAMI. Just knowing I’m going to be in the mix with family members, maybe consumers, it’s exciting… I feel a sense of peace. I feel like I’ve found my fit in this world, my sense of belonging. I’ve found what I’ve been looking for all these years.

Being with the NAMI family, I feel like I’ve found my place.