Intro: Welcome to the 603 Stories podcast, a monthly mental health podcast made by young adults for young adults, where we share stories, make connections and find hope. Any ads throughout this podcast are not associated with 60 3 stories or the 603 Stories podcast. There will be sensitive subjects discussed during this podcast. Should you need them, the National Suicide Prevention Lifeline is 1-800-273-8255 or you can text the crisis text line by texting 741741.
Heather Morris: Welcome to 603 stories, a podcast made by and for young adults where we explore mental health and work to help others make connections, get help, and find hope. I’m Heather Morris, a 24-year-old New Hampshirite, and I am your host.
Jace Troie: And I’m your other host, Jace Troie, and I’m 23 years old and also from Southern New Hampshire. May is Children’s Mental Health Awareness Month, so for this episode of 603 Stories, we’re going to be focusing on a story about navigating mental health and mental health resources as a family. But before we dive in, we want to remind everybody that we are not mental health professionals. We are just passionate young adults who care about everyone’s mental well-being.
Heather: So, with that, let’s get on with the story.
Jace: Today we have some special guests with us. Grace and Sarah are here to talk with us about what it has been like living with a family member that has mental illness. So, Grace and Sarah, would you like to give us a little bit about yourselves?
Sarah: Sure! So, as you said, my name is Sarah, I’m a mom. We live on the seacoast of New Hampshire. We’ve been here for about almost 20 years and our family is comprised of myself, my husband, and then three children: Sam, who’s almost 24, and Grace, who’s here with us today, who’s 19, and then the youngest is Jack, who is 16.
Grace: I’m Grace, I’m 19, I’m a college student. I am studying social work and neuroscience. I’ve been doing a lot of work with mental health advocacy through my school and through numerous different organizations in the state.
Sarah: And I should add that I also work in the mental health field. I have for a little over 25 years.
Jace: Well, thank you for all you do in the mental health field! So, which family member is it that struggles with mental illness?
Sarah: That would be my son Samuel, and he is home. He lives at home with us now, but he is actually doing very, very well. But it’s been quite a journey for Sam and for the entire family. I would say it began when he was about a sophomore in high school, when we really noticed, and Sam noticed, some signs and symptoms. You know, it’s been about six years of a lot of ups and downs. Just each of us experiencing the process differently, and somehow coming together to get through it and to get to this place where we are today, where he is actually doing really well. So obviously Grace and I have different perspectives, mine from the perspective of a mother and Grace’s from the perspective of a sibling.
Jace: Grace, if you would like to kind of jump in and tell us where this all started and the first big pivotal moment where you realized.
Grace: Samuel started showing symptoms when he was 15 years old. He began with showing symptoms of depression, you know, isolation, not really hanging out with friends anymore, staying home a lot, not participating in things he used to participate in, such as, like, he was a three-season athlete, a runner, not showing as much interest in that anymore. And, you know, failing grades, all the kind of telltale signs of something going on and that kind of alerted us that something was different with him. Sam was always quiet. Quiet kid. He had a lot of friends, but he was an introvert. He kept to himself, but the isolation was not like him, so the first big sign that something was different, my mom came home one day from work and found Sam sitting in a room all in the dark, alone, crying. And he just told her, he was like, “I’m so sad and I can’t really explain why.” And from there, that’s when we knew that we had to intervene somehow.
Sarah: And just to jump in on that. You know, at that time, Grace and her younger brother were significantly younger. So, they didn’t really know what was going on and what I immediately did was just reach out to his primary care doctor, and then we got a therapist and a psychiatrist, just for medication evaluation. So, it was very much, okay, I could see you’re having a problem, I think this is depression, we can work on this. And we did, and he definitely, with the help and trying some medication, he did improve. We saw him perk back up and come back to the Sam that we knew. As we said, this started in 10th grade. So, from 10th to 12th grade, I sort of call it the crisis years. We didn’t really know what was good, like we weren’t sure, is some of this stuff that we’re experiencing, like the substance misuse, is this typical teenager experiences, or is this something more? We tried to work with the school. We filed a CHINS because we wanted some more mandatory help with drug testing and stuff.
Jace: Could you explain to our listeners real quick just what a CHINS is?
Sarah: Of course, now I’m not going to remember what the acronym is.
Basically, there’s voluntary CHINS, and then there’s more an involuntary CHINS, where you have a juvenile probation officer. Ours was voluntary, so we actually went to the police and said, “Can you help us?” And then someone was appointed to provide in-home therapy to us, and Sam had to have drug testing and it was sort of holding him accountable. The approach that I did like about it was that it was also mandatory family counseling and I think that that was a resource for us that helped. Grace and Jack got to participate in that as well. Because as I said, they weren’t fully clued into what was going on, but they obviously, even as young children, could see there were behaviors that were going on and there was a lot of chaos at home. We didn’t find the school to be extremely helpful to be honest, I think.
I think what they saw was: “well, geez, he’s still coming to school and he’s still on the cross-country team and he’s still getting passing grades. You know, what’s the problem?”
No one knows their kid better than the family. And so that was frustrating at the time. The other thing that was frustrating was we had an incident at home where he abruptly ran away, and as he was running away made a suicidal statement. It was terrifying. He was missing in the woods for several hours. We contacted the police, they had the canine unit, they were going door to door, it was very dramatic and terrifying for us. He was eventually located, but he had some injuries from being in the woods with no shoes, etcetera. When he was located, a police officer, actually it was a state trooper, came into my driveway and said to me, “You know they’re going to IEA him for this. They’re going to involuntarily hospitalize him for this.”
And, fortunately, I know my resources and was able to correct him and say, “actually that’s not true. He’s going to go and he’s going to have an evaluation and then it will be determined what he needs.”
It was a really negative experience for me. No compassion, not trying to provide any comfort, support resources. I’m happy to say that that approach we’ve definitely seen change over the years and us having to have contact with law enforcement, it’s greatly improved, and I think that’s just because there’s been more training available to law enforcement.
Heather: At what point, or how far into symptom onset, was this happening with Sam, and did you have a firm diagnosis at that point? And also, if you did have a firm diagnosis, how do you feel like that affected the police interaction, or how it was approached?
Sarah: So, as I said, we kind of called those the crisis years. Sam was able to graduate. He actually graduated early because, in school, he found the setting was too much for him. It was too anxiety provoking, and you know, we didn’t want to go along with that. But we did because we could see he was distressed, and it certainly wasn’t helping him. He did graduate early, and he was accepted to the colleges he applied to. He was accepted with an academic scholarship, so a lot of good things were there, but he was not ready, and we knew that, and we did not push it.
When he was 18, we were at the lowest point. He had lost significant weight, wasn’t getting out of bed, and we went and told him, “This is it. Either you come with us cooperatively or we’re going to call an ambulance to bring you in.” He said he’d go. We got to the emergency room and, you know, I call this the worst day of my life. But it was also the beginning of finally getting the help that we needed.
I’ll be honest, I brought him in, I sat alone in the parking lot for two hours, calling his cell phone wanting to tell him, “It’s okay. We can leave. I’ll take you out. We’ll try something else.” But it didn’t work because he didn’t even have his phone, they’d taken it away from him.
But that was his first of twelve inpatient admissions over the next four and a half years. After about the third admission, several diagnoses had been tossed around. There was major depression, there was bipolar disorder. But because he was abusing substances, psychedelics and marijuana, they said, “We’re not going to be able to give you a really straight diagnosis until he’s clean and sober for eight months.” And I thought, well, eight months? How are we ever going to get eight months? And I don’t think we really ever did get eight months but, that being said, after these multiple hospitalizations, finally, the diagnosis that they came to was schizoaffective disorder, depressed type. You know, along with that, he did also help carry the Cannabis Use Disorder and depending on what other things he was using, they would throw that in there as well. I have to say that I do agree with the diagnosis, but it was really, really hard to hear.
Heather: Could you give us a brief summary of what that diagnosis entails? Specifically, the depressed type versus…?
Grace: So schizoaffective disorder, depressed type, is categorized as a psychotic illness. To break it down, it is essentially schizophrenia combined with a mood disorder. So, the symptoms of schizophrenia, such as delusions, hallucinations, as well as symptoms of a mood disorder. So, in his case, depressed type, so symptoms of depression. And it’s essentially all those, kind of combined into one diagnosis. For him, when it comes to his diagnosis, because it’s such an individual thing, you know? Anybody who has a psychotic illness, it’s such an individual thing, in the sense that you get a diagnosis and you’re told: it’s you. Delusions, hallucinations, and things like that. But in Sam’s case, he really only experienced the delusions and the depressive symptoms. You know, he’s had his moments with hallucinations, but it’s really more of intrusive thoughts that didn’t really have explanation behind them, you know? So, like being convinced of something that isn’t actually true. Increased paranoia and severe paranoia and then symptoms of severe, severe depression, you know, just having very, very low points and being stuck in those low points.
Sarah: Yeah, I think the social piece for Sam is a big part of his diagnosis and we never wanted him to feel like just because someone, a doctor or several doctors, have said, “this is what we think you have.” We’ve never wanted him to feel like he has to be identified by that label, because as Grace said, you know, every diagnosis is experienced differently by every person. Not everyone with bipolar disorder has these same symptoms, and you know the thing that was helpful to us was it gave us a direction for treatment. And that’s really what we needed, because with treatment, there was hope. So that’s really when we went on this roller-coaster ride of, you know, he had, over the course of the years, seven outpatient therapists, three different psychiatrists, nineteen different medication trials he did ten weeks of ECT. Which was electroconvulsive therapy, which was a very last resort treatment after he made a suicide attempt.
Grace: To add to the whole electroconvulsive therapy component, when this came about, we were at a point where we really felt like we didn’t have any other option. We had tried everything, you know, we had tried all the different medications, and he had tried all these different therapists and all these different routes, and along that path, he also tried all these different holistic treatments. He tried Reiki. Craniosacral stuff, he tried. He got really into herbs and teas and kind of like trying to make his own remedies with that. Self-medicating with these more natural things. Crystals, astrology, tarot, you know all those. With this, out came like this really spiritual side of him.
Sarah: And I think we tried to, we always wanted to support him in that, in that with, sort of, traditional medicine and all these other alternative therapies. We were open to anything. So, we didn’t turn it down, but I have to say, it was really hard. I mean his, his dad and I, a lot of that we didn’t understand. We’re from a different generation. A lot of that was new for us. We would butt heads at times, but ultimately it will come down to, “Okay, if you think this is going to help, let’s go for it.”
Grace: You know, I think with that as well, my mom comes from a background of working in mental health for twenty-five years. Going along with her career, she’s seen a lot of different treatments that work different for everybody, and electroconvulsive therapy was always one that we were kind of like hesitant towards because there’s so much stigma surrounding it. You see these, you see these representations of it in the movie One Flew Over the Cuckoo’s Nest, where it’s just deemed as this really terrifying experience for someone and it’s kind of just a numbing thing for the patient. Having Sam go through that gave us a lot more hope in the treatments that are coming out nowadays. It’s terrifying to think that your child, or for me, my sibling, is going to be going under anesthesia to endure this treatment that will essentially rewire his brain, you know, change his brain chemistry. But when you don’t have any other option, you’re willing to try anything. And I think that, you know, there’s so much stigma surrounding it, but it is one of those things that I don’t think we would be where we are today had Sam not gone through that treatment. There’s parts of it that were not enjoyable. One of the side effects is severe memory loss. After the treatment, he lost a lot of his memories from his younger years, which was really difficult. But he also had a lot of relief from the turmoil in his brain.
Sarah: It kind of put things on pause. He was able to regroup, and to put it in perspective, since the ECT, he’s only had two hospitalizations. He went twelve total, but only two in the last two years. So that’s huge. But I always like to say, Sam is the bravest person I’ve ever known. I mean, there’s lots of things we love about him, but he’s brave and he’s fought. He’s had to fight probably every day for the last six years. And these treatments? Not just the ECT, but medications, have wreaked havoc on him in terms of side effects.
For me, as a mom, you have a certain vision of your kid and their future, but to see your child, you know, having to vomit every morning because of the side effect of a medication or be so sluggish that they can’t go and hang out with their friend and play a video game because they’re too exhausted. Or to rapidly, for a young man who’s 6 feet and always been slim, gain 30 pounds. You know, and he’s doing all these things to live. When he had the suicide attempt, we were at a point where it was like, “Okay, this is something he can die from.” And he made the choice to keep fighting. We’re very lucky because not all families get that, and we also don’t take it for granted that medications can stop working. They can. And not only that, I mean, for Sam, one of his biggest challenges has even just been accepting that he has a diagnosis. I think when he finally was able to realize that he has this chronic condition that needs treatment, that needs care, was when things started to fall into place and really started working.
Heather: Now it’s extremely evident that you two have so much love for Sam. I’m interested to hear, how do you feel like the crisis years impacted your family dynamic, impacted you as individuals? As well as your relationship to Sam directly.
Grace: I think for me it has made me kind of hypersensitive to Sam in particular, but also the people around me. When I’m around Sam, I’m constantly thinking about, “What could I say that could…?” No, because another thing about Sam, and this doesn’t necessarily have to do with his mental illness. This is just him. He’s just a very, very sensitive person, and he’s very empathetic. He will take on anyone’s emotions around him. He soaks it up like a sponge. So, I’m constantly thinking about like, what am I going to say that could conjure a certain emotion for Sam.
Sarah: Like you don’t want to set him off.
Grace: Kind of, yeah. Set him off, you know, like trigger him. I’m just very sensitive to the language I use and the things that I do when I’m around him, and I think that’s the biggest thing for me. And then I think another thing is our family– you know, my mom works in the mental health field, I’m studying social work, I’m going into the mental health field as well. I’d really like to be a nurse, but for the time being I’m studying social work and it’s really brought up this whole new sensitivity for me for not only Sam, but the people around me. I’m always thinking about trying to be sensitive to the people around me and what they’re going through. It has also made our family much more sensitive to each other as a group, as a family dynamic. We’re all very, because my mom works in mental health, I’m studying it, we’ve all gathered that sense of understanding of mental health. We all are, constantly, because we’ve been through it, we’re all constantly looking out for it.
Sarah: I think, though, we want to be real. We want, in talking about this, we want to be real, and that there were periods of time that were hell at our house. I mean, they really were. We’ve had holes punched in the walls. We’ve had the police at our doors. We’ve had bloodshed and my husband and I, we did marriage counseling because our approach to managing the stress is so different. And in just observing Grace and then Jack, who, you know, is often the forgotten one in this, which I certainly don’t want. But I think we tried to protect him a lot because when Sam was 16, Jack was only 8. So, but he heard a lot. Which is the key, and he absorbed that and now there are lots of things that continue to come out about how he was affected and, you know, definitely resentment, anger. Attention was taken away from him and of course, Grace, we worry that she has taken on too much, you know? And how about not being a caregiver? How about just being able to be a sister? I think these are all ways that our family as a unit, but individually…
And of course, me as a mom, I thought a million times, “What did I do wrong? Is this something I did?” I thought I was doing everything a good mom should do. And I think all those things are normal after I’ve participated in support groups and attended mental health advocacy trainings and such. I’ve learned, you know, geez, these are all sort of common threads that families go through.
Jace: And sadly, I think a lot of that can be boiled down to stigma as well. We’re taught in this society that this isn’t something that we talk about, and we’re taught that if there’s anything going on within a family, it’s the family’s business and it’s behind closed doors and because of that, we don’t hear these stories of other people who are going through this. I think it’s so important that you’re sharing your story right now and giving people hope at the end of the day.
But could you go into a little bit more detail about how the stigma of this mental illness has impacted your family? And more specifically, I know Grace and I had talked at another point about language and stigmatizing language and how it’s used, especially in our generation, the 18- to 27-year-olds, how we use language in a way that might hurt people, without realizing it.
Sarah: For stigma, I have so many examples of it. Part of it was I was afraid to talk about it because I was afraid of how people would treat us. I was afraid people wouldn’t let Jack and Grace have friends over to visit for play dates, because of what they had heard as rumors going on with Sam. In way I was guilty of falling into the stigma as well, until I finally got the courage to start speaking openly and publicly about it. But even with our own extended family members, there was a lot of misunderstanding and a lot of using terminology that we find offensive. It’s just, it’s just sort of pervasive. Throughout everything.
Heather: Was there anything specific that changed or happened that prompted you to be more open?
Sarah: The first thing that happened was I attended a support group. My husband and I did it together.
It made us realize how many other people, it was a seacoast support group, so there were other parents from all the area towns, so it made me realize well, geez, all these people are having similar experiences and, you know if my son was going through cancer treatment, I wouldn’t just probably not ever share that with anyone. It would probably be out there. There’d be like a GoFundMe, or there’d be a meal train.
So that was the first thing. And then the second thing that happened was Judge Broderick came to our high school and did one of his talks. I sat there, and at the time Sam happened to have been in the hospital, so my husband and I sat there in the audience, and I just had tears pouring down my face, listening to him share his story and be so vulnerable talking about his son harming him in a mental health crisis. And I kept whispering to my husband, “I wanna say something, I wanna say something,” and he said, “Go for it,” and I did, and I just raised my hand and I said, “I have something to share.” In, like, two minutes shared what we were going through and after that we were swarmed by a crowd of other parents either thanking us or just giving us a hug. I remember one woman saying, “My brother has bipolar disorder. I know, I understand.” And then from there, it was just empowerment. I think that’s really what happened, then we brought it home.
Grace: For myself as well, I spent so many years, cause this all began when I was young, I was ten or eleven when this began, and I kind of had to teach myself to go into every day pretending that my brother hadn’t had an episode the night before and was in the hospital, I had to go into school, put a smile on my face and just kind of go with that I was fine. I can remember one day when I was in 7th or 8th grade. I had always had occasional panic attacks, you know? But there was one day where I can remember so vividly, the police had been in my house the night before and I really didn’t have any outlet, I didn’t have any way to process what had occurred at my house and the whole situation. So, I went to school, and I had a smile on my face. Just like kind of going with the flow, pretending that I was fine, and I hit the cafeteria and I was sitting at my lunch table with my normal friend group, and I ate my entire 30-minute lunch in silence and everybody around me talked and I just sat silent, eating my sandwich. At the end of lunch, my friend looked at me and she said, “Hey, are you okay? You’re not really talking,” and it was like it flipped a switch and I had the biggest panic attack of my life right in the middle of the cafeteria. She had to take me up to counseling and right then and there I started talking to the guidance counselor at my school and telling her what I had been going through. I hadn’t had the opportunity to really talk to anyone other than my family about what I’d been going through at home. So, when I got the opportunity, it was like a waterfall, just like flowing out of me just, everything, all these emotions, and I was in that counseling office for the rest of the school day because I just had so much to say and so many different emotions. After that, I’d spoken to the guidance counselor and there were a few other people who were in the guidance office, students and I talked to them and that day, I remember I was like, “you know what? I just talked to someone about this, and it was fine. They were really receptive towards me. They didn’t understand, but they heard me.” Something in social work that we’re taught is to not really use the language, “I understand,” when someone’s telling you something and just to instead say, “I hear you,” or, “I’m listening,” or something to validate them but not say that you know what they’re going through. Because, in reality, nobody knows exactly what someone else is going through. And I really felt that that day. From then on, that’s when I really kind of got the courage to start speaking up to my peers about it. From then on it, just like the crowds and the groups that I would talk to about it just grew and grew and grew and then I just wanted to do more and more with it.
Jace: And that’s a wonderful example of how we can use language positively in order to help in a situation, as opposed to using that stigmatized negative language. Have you ever been personally irritated by language negatively being used?
Grace: Yes, yes, yeah, you know, language is such an interesting concept. It’s something that we always hear is like, you know, kids learn what they say from their parents. They learn their language, they learn certain things from their parents, and I think that has a lot to do with the language aspect. There have been a lot of situations where I’ve been around people and they’ve used words that are sensitive to me, and it’s really bothered me. I can remember one instance where somebody used the word “psychotic”. To me, I just looked at them and I’m pretty sure I just said straight to them, “I don’t like that word. Can you use a different, can you pick a different word?” I think I hit a certain point where it was no longer like, someone would say it and I could just brush it off. I hit a certain point where I was like, no, this is something that needs to change. I’m not just going to let the community around me use this language that can be so harmful to people around them and they don’t even realize it.
Sarah: She would come home from school sometimes and be so frustrated with her peers.
Grace: I remember one day with Jack.He came home from school one day and he was so upset. Jack is very sensitive. The two boys, they’re just very sensitive. But he came home from school that day and he was so upset, and we were like, “What?” He was like, “My teacher. My teacher used the word. My teachers called something psychotic and it made me really upset.”
Sarah: The teacher had called herself a psycho.
Grace: Yeah, that’s right.
Sarah: And he was only in 6 or 7th grade, but the fact is, it made an impression on him that that’s not right. It deeply offended him. And he came home and was all worked up about it, so I gave him some tools on how to go back and say something to the teacher.
Heather: Can you explain some of those tools?
Sarah: Well, I just said, you know, sometimes people aren’t aware of the meaning behind their words. They’re just used to hearing these phrases without really understanding, and without considering their audience, so I’m sure she said that without thinking, “Oh, I have a child in my class who has a brother with a psychotic disorder.” And all it is, if you understand where people are coming from, then it gives you the strength to be able to face that. So instead of being angry at her, I said, “Why don’t you go and just explain it to her? She’s probably going to really appreciate you bringing that to her attention, and you know, bringing awareness to it and she’ll probably be much more sensitive with her work.” So that’s what happened.
Grace: It’s the same with words like crazy, you know, like it’s one thing to say something is crazy, but to call someone, like an actual person, that has a whole different meaning. That’s something that, you know, it’s one of those words that gets thrown around every day. People just say it, but nobody really takes the time to think about what the words they’re using actually mean, and how that could affect the people around them. That’s something that since gaining that courage and empowerment from speaking out about Samuel and his experiences, that’s something that we have also become more aware of, correcting people. We don’t want to be “those people,” but at the same time, it’s necessary.
Jace: Be those people, we need more of them.
Sarah: Well, you can be that person, it’s just in how you approach it.
Jace: And honestly, that’s how we’re going to change the culture. That’s how we’re going to change the stigma around it.
Heather: Right. And that’s part of why we’re here sharing our stories.
Jace: Could you explain to us how grief has been a part of this process? Because a lot of times, when families are dealing with mental illnesses, it can cause this feeling of grief, and I feel as though a lot of people struggle with that because, the person is still there, and the person is still here with you, and so it can cause this kind of like emotional whiplash of, well, I’m happy that they’re here, but I’m also very upset at the same time. I was wondering if either of you had a similar experience.
Grace: This is something that we talked about prior, and it made me think a lot about it and how it’s really impacted us. Prior to the onset of Sam’s symptoms, he was kind of the perfect kid. He didn’t get into trouble. He was a good kid. He had lots of good friends. Good, good friends. And he was a three-season athlete. He got really good grades, highest honors, high honors.
Sarah: Very handsome too.
Grace: You know, he had everything going for him and after the onset of his symptoms it was, kind of like, we had to learn to accept that he wasn’t necessarily going to be that perfect person anymore, and that perfect is kind of a relative statement. An example I use was the day that Sam got into his dream college. I remember, we got the acceptance letter, and my mom and I opened it before Sam even got home, and my mom and I were freaking out because he had gotten into his dream school to study environmental science. We were under the impression that that was what he wanted to do. I can remember, he walked through the door, and we were freaking out. We showed him the acceptance letter and he just, like, no reaction.
It hit us pretty hard because, we were like, “Why aren’t you so excited?” But then from there, we had to learn, you know, like okay. He doesn’t want to go to college. That’s not going to work for him. We are going to have to go with that.
I work with elderly and dementia patients and one of the terms that we learn when we’re working with these Alzheimer’s, dementia patients is the term “riding the wave.” Basically, what it means is that wherever they’re at, you want to meet them there. The same goes for someone with mental illness. You want to meet them exactly where they are and not push them to do things that they’re not ready for. You want to ride the wave; you want to let them do what they’re ready for in the moment. Along with that, you have to learn that the ideas behind accomplishments and success are also very relative. Every individual has their own interpretation of what is success and what is an accomplishment for them. For one person, it could be going to college, but for Sam, you know, a great accomplishment for him is getting up in the morning, taking a shower and taking care of himself. You know, that’s a great accomplishment because that shows that he’s making progress.
So, going along with the whole grief thing, we had to kind of accept that that person that he was, when he was fifteen years old before he had symptoms, is not the same person as he’s going to be now and that people change, and things happen, and you have to ride the wave.
Sarah: I wanted to say that grief has played a very, very big role in my life as a mom with this experience and definitely for his dad, and Grace can speak for herself, but for Jack, I think Jack grieved what he thought a big brother should be. A brother that’s gonna toss the football, who’s gonna play baseball with him. But what’s happened is it’s just changed, it’s changed. And we’ve learned that that is okay. I mean Jack and Sam love to go, instead of tossing a football or baseball, they love to go poking around antique shops together, because that’s more Sam’s pace. And that’s okay and they have fun with that.
For me, I didn’t even know I was grieving until a friend of mine was listening to me talk and cry and she used the word, “You’re grieving,” and I thought, oh my gosh, I am. What I thought for my boy is not what’s happening right now, and I don’t know if it ever will happen. And then once I finally just accepted okay, it’s not but what is it that that we are going to have and can have? And it’s great, I mean. It’s like, life can be good.
Heather: Can you explain a bit what your outlook is now versus in the periods of crisis? Like what is your perception of your family, of Sam as an individual? You know, how has it developed?
Sarah: Well, so, he’s been so very stable with a couple of little ups and downs over the last 18 months. no hospitals for, well actually, it’s almost two years.
Grace: Yeah, in June on his birthday.
Sarah: So, I think what’s changed is that we recognize the signs more of maybe when he is falling into a depressive state.
Grace: It’s almost as if we can kind of catch it before…
Sarah: Before it turns to crisis.
Heather: So, feeling a bit more prepared.
Sarah: Yes. So, we’re more prepared and I don’t want to take like… it’s not just. This isn’t just us. This is Sam. Sam knows now, so he’s, just as we’ve gone through this whole process of going through stages, so has he. He knows now, he’ll say, very appropriately and proactively, he will say, “I need to have my medication adjusted.”
Grace: He uses the phrase, “My head hurts.” And we say, “What do you mean your head hurts? Like, physically or mentally?” and he goes, “Mentally.” And then we know. That’s his phrase.
Sarah: Because if he says physically, then I say, “Okay, sounds like you have a headache. You’re dehydrated, have some water.” So, you know, it’s like, we’ve all been in this together. We’ve come to different, we’ve kind of all arrived or passed through stages differently, but we’re kind of now all at the same place. So, for Sam right now, he is extremely independent. I mean, he keeps his own agenda book, he gets up, he showers, he goes for walks and walks and walks every day. He has a part time job. He is very involved in one of the seacoast clubhouses. And that has been a godsend for him, having a community, and a purpose for getting up, and some structure to his day. Sometimes he’ll say, “I need a self-care day.” So, his awareness has really improved. I honestly, when I think about Sam’s future, I think that anything is possible.
Grace: I think that, when we think about him a few years ago versus him now, we never would have– maybe never is not the correct term, but we were not in the place to think that he was going to get to a point where he would be able to, you know, be independent, and live on his own, or have a job, a stable job. You know, be able to take care of himself. I think now that has completely flipped, because now we have reached a point where he’s applying for housing. You know, he’s applying to live on his own. He’s gotten to a point where he’s able to be independent, to the level that he’s able to be independent. We’re still there for a lot of emotional support for him, but he’s reached a point that a few years ago, we probably did not think that he would have.
Heather: So really being able to…
Grace: It’s given us a lot of hope.
Heather: And especially, like, living in a high-pressure society, for anybody, it’s hard to acknowledge when you need to take a step back, when you need a break. And of course, if you have a mental illness or a physical illness, you need to be far more in tune with that.
Sarah: Well, you mentioned something on your first podcast that I listened to. And it really no stuck with me, because you spoke about college and I thought… and you know at the time when Sam was in high school, I mean, it was sort of like there was no other option. That’s what you do. And I got suckered into that because yes, that is what I did. But it’s totally what I wanted to do, and nobody made me. But I fell into that so, of course, when your child doesn’t do what you think is—it’s crushing yes, but now we’re just like—you know? And one thing I love about Sam is, he’s a minimalist. He really shows you all you really need are a handful of things to get by in life and to be content.
Grace: Sam could live with just food, his cat, and water, and the clothes on his back and would be perfectly fine.
Sarah: Right. Maybe some decent shoes for walking.
Sarah: And now we just completely accept that.
Heather: I love to hear this. And I was thinking directly back to the scenario I described in our first episode when I was making that comment about like expectations and success. And I’m just overjoyed to hear your family alter expectations and also celebrate what’s right in front of you, because success and happiness and thriving looks completely different for every single individual, regardless of what barriers are in front of you.
Sarah: And that’s something beautiful that we learned. I mean, I’m a 48-year-old woman and I have learned one of the most valuable life lessons from my child. I don’t know that. I wouldn’t have learned that if he hadn’t gone through this. I would have just stayed along that path, and it helped me be a better parent to Jack and Grace.
Grace: And a better, you know, member of society. Because you recognize that in everyone around you.
Heather: Sorry, I’m just kind of marinating in it.
Sarah: See, now you know someone really listened to your podcast, because I listened to the whole thing and there were so many things that I was just like, oh my gosh. But because what this is doing is like, I had to step back and listen to it from you, your perspective. Here I am, you’re younger, you’re a younger person, and now you’re hearing from my perspective as a mother, and, you know, it’s different.
Heather: Which is huge, it’s huge. Especially, I am the same age as Sam, you know? So, I was the child that was going through struggles and diagnosis and, you know, navigating school with mental illness. And a huge part of why we wanted to invite you on to speak about it is because it is a family struggle. Whether parents acknowledge it or not. Obviously, every single dynamic is different. But to hear how your family stuck by Sam and unified is really inspiring.
Grace: Yeah, and I, from all of this, I’ve learned so much about myself as well. I’ve learned there’s a lot of my mannerisms that are very similar to Sam’s.
Sarah: Yeah, that’s a good point though, because we forget though that there’s not all of this is, is mental illness. It’s just personality. It’s who we are.
Grace: With the whole the whole college thing, when Sam was in high school, we had those expectations. I’m saying we because we all did. It’s what society teaches us as normal. Normal in quotes. But we had to kind of adapt to understand that that’s not really the normal for everyone. That’s not Sam’s normal. And even for myself, I’ve learned that that’s not really my normal. I’ve learned that I prefer online school. I think that that’s another thing that I wouldn’t really have understood if I didn’t watch Sam go through his own self-discovery.
Heather: And that makes me think back to when you were reflecting on Sam being in school and the school not taking the diagnoses as seriously as they really should have and offering him supports that he needed or accommodations that he needed because everyone has different learning styles, different ways that they retain information or interact, or they need different paces of learning even. And it’s so important for us to reflect on that, for everyone, because we’re all kind of thrown into this cookie cutter system where everything is dealt with the same way. And frequent, whether it’s in school or at work or just societal expectations, mental illness, I feel like folks either underreact to it, for example, with the school saying, “Well, he’s doing fine, so,” or they overreact because of that stigma of the diagnosis. Like the expectation that folks with mental illness aren’t going to be successful, they’re not going to be stable. They’re not going to be able to live on their own or even like societal perception that folks with mental illness can be dangerous, which, I know that we talked about it on our prior meeting and that was something that really sat with me, especially with like, stigmatized words like “psychotic” and “crazy.”
Grace: Yeah, that’s another thing that we always talk about with Samuel.
Sarah: He’s the gentlest soul on the planet.
Grace: With his mental illness, his mental illness carries a lot of negative connotations. Like schizoaffective, not many people are familiar with that, but schizophrenia they are so, I always break it down when I tell people. I always say it’s schizophrenia with a mood disorder. Because people are more familiar with that, but along with being more familiar with that, they’re also familiar with the stigma. You see a lot of really negative representation of people with mental illnesses like schizophrenia. And through the media it gives these really terrible impressions of individuals that are suffering, and you know, in a lot of those situations, on the media, it’s something that you have to recognize is. It’s so… it’s individual. Everybody experiences their mental illness differently.
Sarah: And one of the things that Sam has learned himself and you know, I wish he were a part of this, but he’s not quite ready for that, but he accepts anyone and everyone for who they are. He’ll come home and say, “Oh, I made a new friend today.” A gentleman that he met on one of his walks, who’s a Vietnam veteran and they just started talking, and Sam considers him a friend. And I think that’s something that he’s learned.
Grace: That’s something that we can all learn.
Sarah: It’s hard, as a parent, when you hear all these negative stereotypes—
Grace: Because if you met Sam, you would be so baffled by how he does not represent the stigma that surrounds his disorder. He’s so, like…
Heather: There’s no one standard for…
Sarah: There isn’t.
Grace: There’s no one-size-fits-all, it’s everyone’s…
Heather: So, we are coming to an end, but I want to make sure we take a moment to highlight: what are some of the positives? Where do you see things moving in the future? Are there any big lessons or takeaways that you’d like to share with our listeners?
Sarah: Well, I think that since this journey all began for us, there have been some discouraging times. But there really has been progress made. It may not be as much as I’d like, but there is definitely a better awareness, I think. There’s more and more happening within the schools, even in hospitals.
Grace: Even on my college campus.
Sarah: Yeah, I think we’re seeing that more because I think people are talking about it more and so there have been tremendous resources that have helped me and our family in New Hampshire. There can always be more, but I guess since I’ve had 6-7 years now to really see that there has been progress made. So that’s hopeful.
I also think that there are more opportunities for Sam now, because there’s becoming more awareness. As I said earlier, I see anything great in Sam’s future. I think anything that he wants to attain, he can. I think that, in order to do that, he has to continue treatment.
Grace: You know, he has a lot more barriers than what could be considered the typical, like a typical person, but he can still get to wherever…
Sarah: Yeah! I think as long as he continues his treatment, which, that may evolve and change, but, you know anything’s possible for him.
Grace: To add on to that, I think his story has also just left an impact on so many people.
Sarah: A lot of people love Sam.
Grace: Oh my god, the people at the hospital love him to another level, and I don’t blame them. You know, his story has changed so many people’s perspectives, and I think that’s so powerful. On my college campus, we have a mental health committee that I am one of the representatives for my class on, and one of the first things we did was, you know, every week during one of our meetings, two people would share their stories and their experiences surrounding mental health and mental illness and where their passion kind of came from, and I shared Sam’s story. My story took a little bit longer than most other people, but after I shared his story, I got a message from another student who was on the committee. He’s a junior. And he just said, “Thank you so much for sharing. My good friend suffers from schizophrenia,” and there’s so much, I don’t want to call them, I think that illnesses such as, you know, anxiety and depression are so much easier to relate to than you know like schizophrenia. That student that reached out to me, he was like, you know, you hear so much about depression and anxiety, and you know these more understood illnesses, but I’ve never met someone else that also understands what it’s like to be close to someone with something like schizophrenia. And he was just like, “You inspired me to share my own story,” and when it got to his week, he shared his story about being a friend of someone, and which he wasn’t planning on doing in the first place, because there’s so much negative stigma surrounding schizophrenia and schizoaffective, and psychotic illnesses that sometimes sharing the story can be really scary because people think things that aren’t necessarily true and—
Heather: There’s so much fear surrounding that.
Grace: There’s so much fear surrounding it! And so that’s something that, you know, sharing Sam’s story has given other people the courage and the strength to share their own story. And that is such a powerful message. That goes for anyone who has a story, you know. Using your voice to encourage other people and to bring light to these topics that are so difficult to talk about, and shouldn’t necessarily be difficult to talk about, is just something that is so powerful and just needs to continue to happen.
Heather: And especially because anxiety and depression are very frequently talked about, like those are the mental illnesses that are like, plastered everywhere. And it’s not because other mental illnesses aren’t common, it’s just because it’s not being talked about, you know, through spaces like this, or sharing stories at school, it creates that network of support that is vital for success and for reducing that stigma. So, on that note, what would you say, for our listeners, for our hosts, for anyone in general, what can we do to play a part in reducing that stigma? What can we do to support folks like Sam?
Grace: What I said earlier, you know: meet everyone where they’re at because everybody is in a different place in their life and there’s no one place where you should be in your life and just accepting people for where they’re at and what they have accomplished is just completely necessary.
Sarah: Yeah, I would say accept Sam for who he is and give him a chance.
Grace: Give everyone a chance, cause there’s so many times that Sam is, you know, people underestimate him. And then when they meet him, they’re just blown away by him as a person. Don’t underestimate these people because everybody has the same opportunities and the same capabilities. Maybe they have more barriers and more things they have to tackle to get to where they need to be, but…
Heather: It doesn’t make them less worthy.
Grace: Exactly, it doesn’t make them less worthy.
Sarah: But also, not to be afraid to ask for help. If you’re a family that’s struggling with a loved one, and you’re not sure what to do or what’s going on, ask for help. There are supports out there, it just, it does take some effort to get to that, but not to not give up. That’s kind of been our family motto. We’re not giving up. Sometimes we felt like it, but no. And recovery is possible. But recovery is fluid and that is okay.
Grace: There are ups and downs.
Sarah: Yeah, and that’s okay.
Grace: Ride the wave.
Sarah: You gotta ride the wave. We take things, we really do take things, less than one day at a time.
Grace: Just don’t be afraid to use your voice.
Heather: Awesome. I want to thank you so much, Grace and Sarah, for joining us. Do you have any final thoughts you’d like to share before we come to a close?
Sarah: Just thank you for having us and thank you for offering this podcast as another support for people out there.
Grace: Thank you for giving us another outlet to share our story and to encourage other people to use their voice and share their story. And from there, it’ll be a ripple effect. You never know how your story can affect other people and make them want to share theirs.
Heather: Awesome. Well, thank you very much, and thank Sam for us. I really appreciate your family’s vulnerability and openness.
Sarah: We want you to meet him! We should all be together.
Heather: I want to meet him!
Grace: And don’t be afraid to ask questions!
Heather: Stay in touch!
Outro: Thanks for listening to the 603 Stories Podcast, a monthly podcast made by young adults for young adults. You can check out 603 stories on Facebook or Instagram. or at our website, 603stories.org. Just a reminder, the National Suicide Prevention Lifeline can be reached at 800-273-8255, and the crisis text line can be reached by texting 2741741. Remember, you can make connections, get help, and find hope through 603 Stories.