WHEN HE SMILED

WHEN HE SMILED
'Carrying Brett's Light Into the Fight for Awareness'
Exclusive Interview with Bob Staples
Conducted by Allié McGuire

​Some stories stay with you—not because they’re easy to hear, but because they change the way you see the world. Brett Staples was more than his diagnosis. He was a son, a friend, a light in the room… and when that light dimmed, his father, Bob, refused to let it go quietly. This is a story about love that refuses to fade, grief that refuses to stay silent, and a mission to make sure that what happened to Brett doesn’t happen in vain.

ALLIÉ: For those of us who never had the privilege of knowing Brett, can you paint a picture for us? What was he like as a kid?

BOB: Anyone that knew him knew that he always had a smile on his face. He was loving, caring—he just loved people, loved being around people.

As he got older, he got into athletics. He was a good little athlete, did very well in soccer and basketball. Then his sophomore year in high school, he got into wrestling, which is very late to get into wrestling—most wrestlers start at five or six. ​His first year wrestling he finished second in the state in his weight class. His next year he finished third, and his senior year he won his weight class. So he was driven to do well. But it was also during those years that we noticed something was off. The arguments grew. We thought it was just teenage stuff. He never really let us know about the voices until long after he was out of school.

ALLIÉ: So you started to notice something shifting. When did things really kick into high gear with the diagnosis?

BOB: The diagnosis didn’t come until he was in his mid-twenties. We had started taking him to counselors when he was in his mid-teens. He’d do okay for a few sessions, but in retrospect, as the counselor got closer to what the issue was, he would refuse to go. He literally jumped out of a moving car at about 30 miles an hour one time to avoid going to a meeting.

My wife and I have a very good relationship, and I think that’s what kept us going. When he flat-out refused to go, we would go to the counseling session ourselves and talk to the counselor. That helped us to understand—even though there was no diagnosis yet—we knew something was wrong. You blame yourself, that’s human nature, but they helped us to understand that it wasn’t the case. It wasn’t on us. It was the schizoaffective disorder that he was eventually diagnosed with.

ALLIÉ: What was life like then?

BOB: When he turned 16, he decided that living at home wasn’t good because he didn’t want to follow rules. So he couch-hopped through his junior and senior year.

After wrestling his senior year, he dropped out of school entirely. He bounced around a few jobs, eventually went to Job Corps, and got his GED. He was extremely smart. He’d tell me at nine o’clock at night, “Oh, I’ve got a paper I’ve got to write.” And I’d say, “It’s nine o’clock, do it tomorrow.” And he’d say, “No, it’s due tomorrow.” I’d ask, “How long have you known about it?” He’d say, “A couple of months.” Then he’d sit down, pound out a ten-page report in half an hour, no rough draft, just write it—and he’d get an A every time.

ALLIÉ: So he was smart, talented, strong. And then the shift.

BOB: After Job Corps, a friend of his mother worked for Alaska Airlines, and Brett was invited to fly up to Alaska to visit. He decided he liked it there. He did some commercial salmon fishing and eventually went out on the Bering Sea on these longline boats. They’d send out two or three miles of line with hooks to catch black cod. Sixteen-hour days, but he loved it. He did pretty well.

The diagnosis happened in Alaska. He got jailed for something—I don’t remember now what—but part of getting out of jail was going through clinical observation. That’s where he got his diagnosis.

When he wasn’t in psychosis, he was our Brett. He was that happy-go-lucky guy. He knew at that point he had something going on, but he didn’t like the meds. He didn’t like the way they made him feel. He was always searching for other answers. But when he was in psychosis, the anosognosia—the lack of awareness—was evident.

Before he died, the last time he was at the house, he claimed that he was stronger than God, that he could stop a train on a dime. And it wasn’t two months later that he was struck by an Amtrak train and died. We still don’t know to this day whether he was trying to get off the tracks or standing there with his hand out saying “stop.”

ALLIÉ: I can’t imagine what it’s like to hear your son talk about those voices.

BOB: It was terrifying. We really didn’t know a lot about schizoaffective disorder at that time. It wasn’t until after that happened that former State Senator John Nutting reached out to us. He talked about programs in Maine, specifically the Progressive Treatment Program, which is part of the AOT law. It’s outpatient treatment.

That’s when I started looking into it and realizing that there were mechanisms to help. But it wasn’t being promoted. I taught for years, my wife’s an RN, we knew a lot of medical professionals, a lot of law enforcement. I started calling them. I ended up calling about 70 people asking, “Have you ever heard of the Progressive Treatment Program?” One had heard a little bit about it.

The two major groups in Maine that can make referrals into the program are medical professionals and law enforcement. The other is caregivers or guardians. At that point, I thought, “We need to do something to educate people and advocate.” That’s how the coalition was born.

ALLIÉ: And that was a huge decision. You stepped away from your role as school board chair to dedicate yourself fully to this work. What was that moment like, turning grief into action?

BOB: It was tough. To this day, I still have days when I have meltdowns. I went to a Chamber of Commerce barbecue recently. Some people I hadn’t seen for a while came over and gave me a hug, and I lost it. There are times I do well and times I don’t. But this work gives me something to focus on—to try to make good out of a bad situation.

When I put the board together, I tried to bring in people from all different avenues that deal with brain disorders. We’re proud of the board. They do really good work supporting what we’re doing and giving us guidance.

ALLIÉ: For those listening who haven’t thought much about brain disorders, what’s the one thing you’d want them to walk away knowing?

BOB: The biggest thing we as a society have to do is get away from the stigma of mental illness. It’s not a social shortcoming. It’s not a choice.

If I had an issue with my heart, they’d give me medicine because the heart is an organ. With brain disorders, the brain is an organ. There’s a chemical or physical change. In the heart, it might not beat properly. In the brain, it manifests as what people used to call “crazy.” And people shy away from it out of lack of understanding.

If you saw an old lady with Alzheimer’s walking down the street in the middle of winter in her pajamas, you’d stop and help her. But if Brett was walking down the middle of the street in his pajamas in the middle of winter, people would cross to the other side. It’s still a brain disorder, just like Alzheimer’s is.

ALLIÉ: For parents who have a child dealing with a brain disorder, what advice would you give?

BOB: A couple of things. Don’t give up on trying to get help for your child. Reach out to local organizations, wherever they might be. Jump onto our website—we’re still building it, still adding resources. Go to the National Shattering Silence Coalition resource page. And take care of yourself. Caregiver burnout is huge. You need to take time for yourself and understand that it’s not a shortcoming to need a break.

ALLIÉ: That’s excellent advice. Before we close, what’s your favorite memory of Brett?

BOB: His senior year, when he won the state championship. The look on his face—the happiest we’d seen him in a long time. He was so proud, knowing that everyone else on his team had started wrestling at four or five years old, and he hadn’t started until he was fifteen. His smile said it all.

I’ve also done some work in Portland with a group that serves the homeless, and they all knew him. Everybody said the same thing: “We miss his smile.” Even in his worst moments, he was generous. One winter before he passed, we outfitted him with everything he needed. But he would “lose” things—he was giving them away. He gave away his boots, told us he lost them, but we knew better. Then he went out in twenty-below weather in just stocking feet. He lost half of one foot and a toe on the other. But that was him—generous to a fault.

It’s a shame that across the country we have groups worried about rights. I understand people should have rights. But if someone is a danger to themselves or others, if they’ve been incarcerated or hospitalized multiple times, it’s not working. That’s where AOT laws come in. In Maine, it’s the Progressive Treatment Program. It’s not about putting them in a hospital—it’s a community-based program. Yes, it’s court-ordered, but for some people, that’s what it takes. I’ve said this in Augusta to groups who oppose it: I hope you’re proud that my son died with his rights on.

ALLIÉ: There’s work to do. You say Brett was so generous—I don’t think the apple falls far from the tree.

BOB: It’s not about me. It never has been about me. It’s about what you just said: I don’t want others to have to go through what we went through. I taught for many years. I loved working with people and kids. It was tough giving up the school board position, but I knew I couldn’t do both.

Now I just hope people can learn from this and find a different path. ∎

Learn more about the Brett M. Staples Brain Disorder Awareness Coalition:
bmsbdac.org