June 15, 2023

Voices of Recovery: Episode 12

After a long career with the U.S. Postal Service, Marc DeGregorio retired a few years ago and dedicated his time and energy to helping others. He teaches classes for NAMI, including the Family-to-Family program. That’s an eight-week program meant for family, significant others and friends of people with mental health conditions. Marc’s passion for helping others is informed, in part, by his efforts to make a better life for his daughter, who struggles with mental illness. He talks with Dr. Ken Duckworth, NAMI’s Chief Medical Officer, about teaching, learning, parenting, and philosophy.

This conversation was part of Dr. Duckworth’s research for the book, You Are Not Alone: The NAMI Guide to Navigating Mental Health–With Advice from Experts and Wisdom from Real People and Families. Hear more episodes of this and other podcasts at nami.org/podcast.  




Episode Transcript:

Ken Duckworth: [0:00] A note for our listeners. This podcast includes discussions of suicide that some people may find difficult.

[0:06] [music]

Ken: [0:07] Welcome to "You Are Not Alone Voices of Recovery." Hi. I'm Dr. Ken Duckworth. I'm a psychiatrist and the Chief Medical Officer for the National Alliance on Mental Illness, NAMI. I'm the author of NAMI's first book, "You Are Not Alone. The NAMI Guide to Navigating Mental Health with Advice from Experts and Wisdom from Real People and Families."

[0:26] I talked to over 100 people for this book, and I wanted to share some conversations that I felt had teachable moments in them. One of my conversations with was Mark DeGregorio. He's retired and teaches classes for NAMI, including the Family to Family Program.

[0:44] Family to Family was created for NAMI by Dr. Joyce Burland. It's an eight‑week program meant for family, significant others, and friends of people with mental health conditions. It provides information and strategies as well as the knowledge that you are not alone in going through this.

[1:01] Marc has also participated in a NAMI advocacy training program to build skills in grassroots activism. Marc had not experienced much in the way of mental health problems until he and his wife adopted three sisters who had been in the foster care system. He's responded with grace and giving to others when confronted with the possibility that one of his daughters may not improve.

Marc DeGregorio: [1:29] 1998, my daughter, my oldest adopted daughter, had a psychotic break and ended up in a place called Riverview Hospital in Middletown, Connecticut, for children and adolescents with mental health. In that hospital, which she was there 18 months, which was a very, very long time in place…

[1:48] [crosstalk]

Ken: [1:48] Wow.

Marc: [1:49] We had Medicaid insurance for her because the girls came with that because we adopted the DCF kids, which are Department of Children and Family kids. They came with that insurance package. It was huge money. Otherwise, I would've been bankrupt probably.

Ken: [2:06] You would've been bankrupted just on the one child.

Marc: [2:10] In that experience, the social worker there who we met with regularly mentioned NAMI classes. I had never heard of it. I didn't know anything about it. My wife didn't want to take it, but I took a class in New Haven where I learned a lot. It was a 12‑week then.

[2:33] That helped me because I got to understand more about what I was looking at, what happened to us, what happened to her. I got questions answered that I could bring to the doctors too and ask them while we had the meetings.

[2:45] It gave me an overview. Also, meeting the people in the class was nice because you're brand new, you don't know anything about it. You're in a whole nother universe, and you have no guide. You have no compass.

Ken: [3:03] I'm trying to write the guide with your help. I had a young man who lives with schizophrenia in Kalamazoo, Michigan. He said, "People are blindsided by mental illness. They don't know it's coming."

Marc: [3:18] No. They get hit like a train. It hits you like a train.

Ken: [3:21] Hits you like a train, and you didn't know it was coming, and then it's there, and you…

[3:27] [crosstalk]

Marc: [3:27] Right. I've had many, many families…I just spoke to some people I'm interviewing for the new class we're having in September, and they didn't see it coming up. They have no idea what happened, how they got here. The other children or one child is doing very well. That was expected, and then it wasn't.

[3:50] I analogize it to "Alice in Wonderland". It's like when you go through the rabbit hole or the looking glass. You can't go back out again. You have to make your way through the other side of this thing. For my daughter, it's 22 years now, 23 years, and she has never righted the ship.

[4:13] She's had multiple housing issues. We've put her in all kind of supported housing, which we were given to because we were in the public health system with her so we got a lot more opportunities than other people.

[4:27] We were fortunate there. We also bought a condo for her to live in with oversight from a nonprofit that would come in and give her a med aids and other aids coming in. That didn't work. Three nursing homes. This is her third nursing home, and that's where she's going to end up for good because she is getting more and more impaired and more and more unable to ever live outside again.

[5:00] People talk about recovery a lot in our world. NAMI World talks about recovery. I don't know what that means sometimes. Recovery is in the eye of the beholder, and my daughter is never fully recovered. She's had lulls. When I teach classes, people need to hear my story because they need to know that could end up their story too.

[5:24] Not to frighten them, but not to give them a Pollyannaish idea that, "You're going to get better, and everything's going to work out." It many times does not.

[5:34] [crosstalk]

Ken: [5:35] There's an interesting dimension of this. You've had so much growth and transformation through teaching this class. I don't think you could call that recovery, but your experience has gone from, as I heard it, this happening to you, to you become an agent of service to others.

Marc: [5:56] It has been evolved that way. Maybe the healing you get is your own from doing these things. You heal yourself so you can handle your life rather than heal the person and make them better. It helps you heal your ability to transverse this world. Sharing, for me, with other people has been a healing experience.

Ken: [6:22] It gives meaning to your children's lives.

Marc: [6:26] Gives meaning to her losses and doesn't make her an invisible statistic, a marginalized nobody. It makes her real to people. I owe her that. It's not easy, but I feel very fulfilled by it. That's why I keep doing it.

Ken: [6:50] Let's talk about you did this class when you were how old When you first took your first Family‑to‑Family class at NAMI?

Marc: [6:58] That was 1999 or in there, I would have been 47.

Ken: [7:04] The class had just been invented by Dr. Joyce Burland. You were right out of the gate.

Marc: [7:10] I didn't realize that at the time.

Ken: [7:11] [laughs] I interviewed Dr. Joyce Burland, who invented the course for this book, and her experience was a lot of paying forward that the program was sponsored, funded by a woman who took one of the very first classes.

[7:30] She felt it had improved her relationship so much with her son that when the son passed away from cardiac causes, when she sold their son's house, she donated to the Family‑to‑Family program. The first funding was genuinely a person who felt that the Family‑to‑Family program had helped them so much.

[7:54] There was no money for the program, and one woman said, "Whatever you do, don't say who I am. I don't want my neighbors to know I have money."

Marc: [8:01] To keep it going, you need that. When people feel that they have a place to go that understands and listens and can help a little bit, it's a big thing to them when you're all alone and you feel like you're the only one on a planet going through this.

Ken: [8:18] The book is called "You Are Not Alone" because I think there's so much in that statement of joining with other people. These are…

[8:27] [crosstalk]

Marc: [8:29] I met two women on the phone this week that had never spoken very much to anyone about their situations and felt so relieved to be able to talk to somebody who seemingly got it, understood.

[8:44] I told them, "You can connect with all people in the class. It could be a mini support group for yourself or friendships that build out of it. That way, you don't feel like you're some weird alien."

Ken: [9:00] You mentioned to me. What did you do for your career? Forgive me, Marc. I don't remember.

Marc: [9:04] My longest position was in the Postal Service in Branford, Connecticut. I was a window clerk, customer service person. Did that for 33 years. I was also a union representative for 30 years for my office. That, to me, it's almost a similar…I was an advocate for powerless, voiceless people, and that's what I'm still doing.

Ken: [9:33] How so? How was the post office like that?

Marc: [9:39] It's a good job. It pays well. It's union wages and benefits. It was a miracle for me to have this job in my life. The management, it's dictatorial, it's top‑down, very sadistic, very, very egotistical.

[10:00] It was constant crap, and people were being picked on and bullied. I was trying to be the intermediary sometimes of all this stuff. That was difficult. I feel in some way the parallel universe now is that I'm a steward for these people who don't have any voice.

[10:22] I can advocate for my kid or people like her that need housing, that need money from the administrations to help their lives work better. I did do a first‑time advocacy role with the legislation here in Connecticut this year, earlier this last winter on Zoom, because you didn't have to go to the Capitol.

[10:54] I took some training in it on how to do it, how to kick your stories. You have to make it quick.

Ken: [11:00] Through NAMI?

Marc: [11:01] Through NAMI's advocacy training, he calls it. You have to present very…They only give you two or three minutes.

Ken: [11:08] That's right. It's very tight. It's very tight.

Marc: [11:11] It's ridiculous. I did try it, and it's only two legislators show up on Zoom, two. That was disheartening. I'm going to try it again maybe this winter if they come back into session.

[11:26] Again, our people are always at the bottom of the barrel, in terms of handouts and what's necessary, and we have tremendous need. Housing stock is so expensive, as you know, probably wherever you are, too.

Ken: [11:40] Yes.

Marc: [11:42] Affordable housing for people without mental health is a huge bite. What do you do for supported housing? What do you do for people who need 24/7 supervision? All that. It's almost overwhelming when you think about it.

Ken: [11:59] It's a lot. I freely agree with you.

Marc: [12:02] The problem has been neglected for many, many years. As you know, when the '60s came in and they deinstitutionalized, they did it haphazardly, just did it with no thought, no preparing.

Ken: [12:19] The chips fall where they may, but those are actually people that are falling. They came in with no supports and no housing, and they didn't do anything. They didn't live up to any of their thing they said they were going to do. We're still fighting this out.

Marc: [12:34] Still fighting it. Agreed. Absolutely agree.

Ken: [12:39] If you go by, as a aside, we have Connecticut Mental Health Center on Park Street in New Haven. [inaudible] New Haven at all?

Marc: [12:47] I was recruited to run the Connecticut Mental Health Center many years ago.

[12:51] [crosstalk]

Ken: [12:51] I had young children, and I was very interested, because it seemed like it had a lot of creative effort.

Marc: [12:59] It has, but it's been shunted a lot on the budget end.

Ken: [13:05] Constantly underfunded.

Marc: [13:06] It's across the street from a pristine, beautiful, looks like a five‑star hotel, which is now Smilow Cancer. It's beautiful. I spent some time up there, too, because my wife was ill for a while, but not cancer, but something else, and they put her in that wing.

[13:22] This Connecticut Mental Health Center looks like a throwback to 1960. The building, the way it looks, the decorum. Over there, it's beautiful, because cancer gets money. It shows it almost in real time as you go down the street and think, "Oh my God."

Ken: [13:40] All you have to do is stand in the middle of the two facilities and look. 100 people out of 100 know which one is more acceptable to society.

Marc: [13:50] It seems like we stigmatize everything. I don't know. Mental health has not been destigmatized.

Ken: [13:57] Do you see the attitudes improving at all?

Marc: [14:01] The only thing I can say is what I like is there's more commercials on it, if you noticed. There is more talk in the media. You got to watch out it doesn't become a Hollywood chic thing to do. Bipolar is chic. Kardashian has bipolar.

[14:23] It could be disingenuous to the people who are really sick, and can't work, and can't get out of bed. It makes it look like, "These people have it. Look at them. They're great. They are on TV, they're in movies. What's the problem?" The danger is simplifying it too much.

Ken: [14:38] That's right.

Marc: [14:39] I don't know if you saw "A Beautiful Mind."

Ken: [14:41] Of course.

Marc: [14:43] I felt it was good. In a sense, it made you schizophrenic at the beginning, because you believed what you saw. The other part of it is it almost simplified it to the point where if you just ignore it, you can get on with your life.

Ken: [14:58] That was one story that was true, but it doesn't represent many people's experience.

Marc: [15:03] Right. Some people we know saw that and said, "I saw it. I couldn't believe. That's what your daughter has, right?" I said, "Yeah, to some extent, but this guy was a brilliant genius."

Ken: [15:13] He was a genius before he developed schizophrenia, and he lived with schizophrenia and being a genius.

Marc: [15:19] He learned how to manage the visions and all that stuff.

Ken: [15:22] That's right.

Marc: [15:23] I think it's a case‑by‑case basis. If my daughter didn't have her meds, you couldn't get near her.

Ken: [15:30] From aggression, or…?

Marc: [15:32] From the voices, from the antagonism of her life. Even on her meds, when she hears the voices, she immediately goes into a suicidal ideation when she's stressed, when she's unhappy. The voices are always terrible, mean, lousy.

[15:49] Of course, it could be pieces of her old life when she was in foster care, who knows? When I see some of these people, and I've had them speak at my inner own voice portion of the class, it can almost be disingenuous to the reality that the families are living with.

[16:10] It also could set you up to fail. If you think, "Look at that person that came and talked at NAMI. They have a job, they have a career, they had a kid. That's what I want for Johnny." Johnny may be thinking that aliens are talking to him every night, and they want him to be her or end up like…You have to be very careful.

[16:35] I feel that recovery is important, but recovery is an individual event and recovery has to be in reality, not in just expectations.

Ken: [16:47] That's right.

Marc: [16:50] That bothers me a little bit, because you're sitting there in that hopeful chair and thinking, "We're going to get through this. It's going to be OK. It's going to end up happily ever after." Mine didn't end up happily ever after.

[17:03] That was a long progression of this. Like I say, my story needs to be told, in that this could be also the other end of what happens to your kid.

Ken: [17:14] It's a lot, but it hasn't broken you, and I hear a man. Many people who retire from the Postal Service golf.

Marc: [17:24] I know some golfers. I played many, many years ago, but I don't get involved in that…

[17:31] [crosstalk]

Ken: [17:31] You could've made the decision when you had 33 years in the Postal Service, union rep, taking care of people, advocating for people, you could have said, "Enough, I'm going to golf. I'm going to learn how to golf, or join a bowling league, or gardening."

[17:46] There are people who do this all the time. You made the compelling decision to me to take it on, and you're going to help other people that are on that side. How did you come to that decision instead of playing golf?

Marc: [18:05] I think part of it is my nature. I don't know if I'm a rescuer, or a helper, or whatever. I like helping people. I find [inaudible] and help them, which is what I did at work. You're right.

Ken: [18:18] Yes.

Marc: [18:18] The contrast is great because when I was there and I did it, I was never appreciated and hardly ever thanked for the…

Ken: [18:29] At the Postal Service.

Marc: [18:30] Right. Even the people you helped who were desperately in trouble. When things passed, the dark clouds passed, they didn't even want to talk to you anymore because they don't want to be seen being a supporter of yours. They have bosses that would not like that.

[18:49] Where I do hear, and people, the public who I help or talk to appreciate it so much. We really can't [inaudible] . I find that very gratifying.

Ken: [18:58] When did you decide…You're into your retirement. When did you decide you were going to take on this mission? When you made the decision to take this on.

Marc: [19:08] I was retired three years. NAMI offered through a…I guess I was still on the email list. The training for being a teacher. I thought, "You know, this is something I wanted to do when I took a class back in '98, '99." I thought, "Now might be a good time for me." I got to…

Ken: [19:28] Almost 20 years ago, right?

Marc: [19:30] At that time it would have been 2012, so 13, 14 years.

Ken: [19:35] Got it. OK.

Marc: [19:36] I was 60 years old. I thought…Not that that mattered, but I felt this was a good opportunity. With a three‑day weekend away…We'd go up on a Friday and you come back on a Sunday afternoon. I got to live and be with other people who were training with me. That was another enriching experience. Talk to these other people.

[20:00] I'm not good at this stuff. I don't like public speaking. I don't like being in front of a group. I was always the guy in the back of the room who never raised his hand or anything.

Ken: [20:11] You were paying attention, I suspect.

Marc: [20:16] I did go. I took it. Then, that fall…It was August of 2012 or June of 2012 I completed the three days. September of 2012, I did my first class. They put me up with a person in Branford, Connecticut on the NAMI shoreline. They said they need a substitute. Can you go?

[20:39] I thought, "Well, let me get wet here. I've got to do it right away." I was afraid if I didn't do it, I wouldn't do it at all."

Ken: [20:43] Exactly. Just jump.

Marc: [20:46] I went in and I really had a tough time. I couldn't talk. I would choke up. I would freeze. I couldn't read the material, hardly. I was so nervous. I worked on that. I got some help for that. I kept doing it. She made another semester. We did another one and we did another one. I kept doing it. I haven't stopped.

Ken: [21:13] How many people attend your classes, would you say?

Marc: [21:16] Anywhere between 10 and a dozen. Sometimes a little more, but usually it's around that number.

Ken: [21:23] They're mostly family members of people with schizophrenia or are there other…?

[26:33] [crosstalk]

Marc: [28:10] Yeah, they're different family members. It's not just schizophrenia. It's all of them.

Ken: [13:23] It's everything.

Marc: [13:53] Everything. We've had two spouses last semester, the one I just finished in June. We had two husbands who had sick wives, and a very long time. One guy was over 50 years married with a woman who had mental health problems for 50 years.

[21:53] Then, you've got another fellow who had over 25 years with their…Just the first time they've heard of NAMI and trying it. They were very grateful for the opportunity to talk and have somebody listen to them, who were spouses and alone.

[22:10] Most of it is parents. Most of them come as parents.

Ken: [22:15] That's how it was originally conceptualized but, of course, life is more complicated than that.

Marc: [22:20] We've had offspring, children of people with mental health. We've had brothers and sisters come. One, we had the whole family, which I thought was unbelievable. Mother, father, and two sisters of the sick brother. They all came to support him.

[22:38] There's none of that anxiety or anger about it in that family. They were lucky. They had a very supportive environment.

Ken: [22:46] You told me this quote. You said something to me, like "I don't do it to make her better. I do it to make myself better for her." That's what you said to me over the phone.

Marc: [22:57] That's right. I tell people that, that if you take the eight weeks, it's not going to heal your loved one but it can help you get better in dealing with it. That's about all you can ask for out of it, because the people think you're going to come here and some magic word or magic bullet is going to change your…

[23:20] It just changes your perspective sometimes, how you look at it. If you're more friendly to them, if you empathize more, I found empathy a big piece of how I improved my feeling about my daughter.

[23:34] I went from anger and constant angst about it to compassion for her position, where she sits every day, 24/7, no weekends off for her problems. The voices don't take Saturday and Sunday off.

[23:50] If you get a little bit into that head, into that world, you start to feel like, "How would you do?" It changes the scenario of fathers especially who get mad at their sons, who they want to be athletes and whatever, and their dreams get dashed, and they're angry at the kid for not working or not finishing college.

[24:20] That, it has to be displaced with compassion and empathy.

Ken: [24:24] You mentioned to me that you've become of a specialist for fathers. I love this idea, because, of course, NAMI is more female than male. The idea that you have a little specialty so you said you meet fathers for coffee?

Marc: [24:41] Right. It's not like I do it Joe Monday, Tuesday. It comes up if they're free. There's about four fathers that I do meet with individually at a diner or coffee shop. One guy regularly on a Thursday morning. Last week, I did all four of them almost in one week. Different restaurants. One guy works, so we do it at night.

[25:11] Let's see, this week, I met one for coffee, one for lunch. They like talking to another father. They like feeling that you understand, you get it from a male point of view. I do talk to mothers, too. I was on the phone last night for over an hour with a mom who needed some support.

[25:35] I meet with the guys, and they like it. If the other guy tells me, "My son hasn't taken a shower in five days, two weeks, whatever," who's he going to tell that to? Not too many people. They can tell me.

Ken: [25:53] It's safe with you.

Marc: [25:55] Yeah, and I tell people, "My daughter's gone in with suicidal ideation every month since COVID hit from her nursing home, because they lock down and they keep her confined, and it drives her crazy, and that makes the voices start."

[26:11] She just went in last week again. This week, she's going to get out Monday. That's wearing, it's tiring. It's "Groundhog Day." Every month, same thing, here we go. That's how she copes. Instead of blowing up at her and saying, "You're in there again. Look what you're…" I go along with it, because I can't stop it.

[26:38] I'm not in her world. I don't live her pain. You got to divorce that feeling of she's not doing it to make me look bad or whatever. When I go and I can tell a guy at coffee, "This is what happened," they get it right away. She had COVID last year. We thought she was going to pass away because she has a lot of underlying problems, but she's alive.

[27:03] Last month, she had too much and one of her medicines gave her an overdose poisoning. She was in intensive care for two days. We thought she was going to pass away then. She got through it. You went through a life‑threatening illness in July. [inaudible] even remembering that. She doesn't remember that.

[27:24] Only I could tell someone who understands that. Where somebody would say, "What do you mean she doesn't know she almost died?" "No, she doesn't. That's like you might as well talk about the Civil War to her. It's way in the back already. She doesn't have any memory of it anymore maybe."

Ken: [27:40] She's living a more moment‑to‑moment experience.

Marc: [27:45] Right. It's Buddhism, but not in the greatest way.

Ken: [27:51] You've developed a kind of Buddhism in terms of your acceptance. You've described that you go with this. You accept it. You don't fight it.

Marc: [28:04] I've learned, I think, through therapy. I read many…I like Thich Nhat Hanh. I don't know if you know who that is.

Ken: [28:09] Oh, of course.

Marc: [28:10] I've read many of his books and his tapes, too. I used to have, at work, to keep me calm during all…He talked about the moment, living fully, that happiness is the journey, not the destination. Those kind of things really speak to me.

Ken: [28:32] Do you think NAMI's doing a good enough job on incorporating some of these acceptance principles in family to family visits?

Marc: [28:40] He doesn't mention acceptance too much. It's almost like there…If you talk about recovery, can you talk about acceptance in the same breath? Acceptance is, to a lot of men, especially, it's giving up. It's surrendering to it. They don't want to do that. They want to fight to the last man.

[29:06] I had a father even tell me that. We were talking on the phone. He's a businessman. He had his résumé when I called him. I said, "How's your son?" He never mentions his son. Hardly ever mentions anything about it. Very vague. Talks in business‑speak. You hear the corporate come out when he talked.

[29:29] He says, "Well, we're not going to get to accept this. We're not going to get to that, but we're going to go forward." I'm thinking, "You're taking the class to learn to accept this."

[29:41] [background music]

Ken: [29:42] Somebody told me that NAMI was the best‑kept secret in America. That's why they wanted to be interviewed for the book. They said to m…

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