Ambiguous Loss - Living with grief caused by SMI (guest: Jerri Clark) (Ep. 85)

We’re  delighted to welcome a return guest, Jerri Clark.

Jerri first joined us on Episode 32, “Channeling Grief and Anger into Advocacy and Acceptance”, and is now working with TAC (Treatment Advocacy Center-, see Episode 71 with Kathy Day. Episode 31  with Lisa Dailey, Episode 35 with Sabah Muhammad ), ) as Family Resource and Advocacy Manager. She has a fellowship as TAC’s DJ Jaffe Advocate this year. Jerri is a family member whose son with SMI died from suicide.

The six coping strategies (not linear)

1. Normalize Ambivalence
2. Find Meaning
3. Adjusting Mastery
4. Reconstruct Identity
5. Revive Attachment
6. Discover New Hope

We Ask:

1. Tell us a bit about your story, Calvin and how you came to your present job at TAC.

2. Tell us about your fellowship as TAC's DJ Jaffe Advocate

3. Who coined the term Ambiguous Loss, and what does it mean?

4. How does one process this complex form of grief when there is little recognition of its impact?

5. How are you developing strategies for dealing with Ambiguous Loss? - what is the  

ambiguous loss family training project ? 

Links:

https://www.treatmentadvocacycenter.org/

help@treatmentadvocacycenter.org

Dr Pauline Boss books

Facebook: TAC Family Support Group:

https://www.facebook.com/groups/tacsupport

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Transcript

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SPEAKER_01 0:00

An ambiguous loss is a loss that lacks clarity or resolution. The one that is probably the most relevant to the audience of this podcast is someone who is physically present but psychologically absent or so changed that these seem like they're gone. So a phrase that can help with understanding is gone but not gone.

SPEAKER_00 0:27

Gone but not gone. How well that sums up ambiguous loss. Living with the cycle of grief caused by severe mental illness. Our guest on this podcast is the family resource and advocacy manager at the Treatment Advocacy Center, and she can help with your ambiguous loss. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. With Miriam Feltman, Mindy Gryling, and Randy Kaye. This is episode 85. When I look at these numbers, it's just so amazing. We've been going, this is our fourth season, and we're so happy you've joined us here for Schizophrenia Three Moms in the Trenches. We are three moms. We each have a son with schizophrenia. We have daughters as well. We have families. We've been through probably what you're going through, and we've each written a book about our journeys, and we continue the journey to advocate and help others with this podcast. I want to mention a couple of things before we begin. And one is if you've been following the podcast, you know that my son, who I call Ben in my book, Ben Behind His Voices, he's been incarcerated pretrial for nearly seven months now. And I finally just wrote an article about it on LinkedIn and I put it on Substack as well. Just like, okay, people, this is enough. Like he's had time to figure it out. He's gonna go to jail diversion. I'm hoping it's gonna be a fresh start for his life. But if you're interested and you don't know about Substack, Substack is a platform where people can post articles, post writings, post podcasts, although we don't use that for that purpose. And if you go to Substack.probablycom and you search for me, Randy K, R-A-N-D-Y-E-K-A-Y-E. If you want to follow my writings, just you know, sign out as a free subscriber. You can sign on. Some people want to be a paid subscriber, and I don't have any special content yet, but eventually I will. I think I have three paid subscribers at this point, but just it's totally free. If you want to read the article, it's on there also on LinkedIn. The other thing I wanted to mention, and I'm not going to monopolize anymore, is this new book. It's called Daring to Breathe. Now, actually on Amazon, there are two books about dealing with grief. We will be talking in a minute about ambiguous loss, but this is a book, Stories of Living with the Foreverness of Grief. And these are two women, Armin Bacon and Nancy Miller, whose first book came out at the same time mine did, like 10 years ago, and they each have lost a child. And so they developed an email friendship, and out of that came this book. And this is a collection of essays from many contributors. If you're watching on YouTube, I'm holding it up. And I'm one of them. So that's why I'm mentioning it. So my essay about the grief of losing who your child was, but he's still there is a different kind of grief. And they were kind enough to ask me to write something. I think it's on page 84. So check out this new book, Daring to Breathe. We all continue to write. We all continue to contribute to anthologies. And uh coming up soon, check the Facebook page for the date. We will have an episode where you can be on our Zoom call with us and ask us questions. And that's all I have to say. Mindy, Mimi, anything, any updates from you guys?

SPEAKER_02 4:03

Well, before I do a quick update, I just want to say I did go to Substack.com or somehow it popped up. I don't think I even had to go there. And your essay, Randy, is wonderful. And I'm really glad, being as you know, a former legislator, that you are now at the point where you're going to consider, and I hope you do, contact legislators. Because unless they hear from people about family members being in jail for no good reason, not even nothing has ever been stuck in terms of a crime. And that's really the long past the point where legislators should hear about it. But wonderful article. I hope people read it. My update is just that Jim is no longer having features. He's not falling down. He's not dropping everything under the sun, including glasses of sticky juice all over the house, because he finally once again got his clozepine stabilized. He stopped smoking, he stopped using spooks, and he stopped using all of his supplements and green powders and things. And it just took a while. And then he started using e-cigarettes. So all those things affect clozepine. And he's finally walking like a regular person. So we celebrate. That's wonderful.

SPEAKER_00 5:18

And if you've read Mindy's book, Fix What You Can, you know this may sound like a fairy tale to you, but believe me, this family has not lived a fairy tale. But it's good to know that there's hope. And Mimi?

SPEAKER_03 5:30

Well, Nick's doing well. His clozapine levels are bouncing around a bit, and we're not quite sure what's going on, showing a few breakthrough symptoms, but I think I think we're going to be okay. Okay.

SPEAKER_00 5:44

And, you know, lest you think that this is a total clozapine podcast, there are other medications that work well. Many of our listeners and our guests who are success stories have written to remind us that there are other medications that for them work quite well. And we don't want to discount. Basically, we want you to find what works. But the reason we talk about clozapine is that so many people never get it prescribed because it's a little more difficult. And we want that to be part of what could be prescribed if that's the treatment that helps your loved one. Right.

SPEAKER_02 6:17

And I always put in here, we want people to be able to know, because a lot of people didn't, including Mimi. She's shared that in her story, that it is the best antipsychotic for the vast majority of people.

SPEAKER_00 6:28

Yeah. So, and we have episodes on that. And speaking of past episodes, and Jerry, you can go ahead and turn your, unless you want to make a grand entrance in 10 seconds, we are delighted to welcome a return guest, Jerry Clark. Now, Jerry first joined us uh back on episode 32 when there's the full version of her family story there. That episode is called Channeling Grief and Anger into Advocacy and Acceptance. And now she's working with the Treatment Advocacy Center. And if you want to know more about that, see episode 71 with Kathy Day. But Jerry's role is as family resource and advocacy manager. She's got a fellowship with Tech's DJ Jeffy Advocate this year. And in case you haven't seen episode or listen to episode 32, she's a family member whose son with SMI, serious mental illness, died from suicide. So welcome back, Jerry. Thank you for having me.

SPEAKER_02 7:27

And I would just observe before we get to Jerry that we've also had from TAC Lisa Daly, who's uh the executive director, and we had Sabah Muhammad, who is an incredible uh staff member there as well. And she talked about um racial racial balance and equity as well as mental health issues.

SPEAKER_00 7:47

Awesome. So I will look up those episode numbers and copy them in the show notes as well. Yeah, we're we're big fans of TAC. So um we're here talking about ambiguous loss, and that is a big topic and ways that you can help people. But just take a minute and refresh us uh about your story and about Calvin and how you came to your present job at TAC.

SPEAKER_01 8:13

Sure. So uh my son showed his first psychotic symptoms when he was a 19-year-old college student, and I learned quickly that help was gonna be really, really difficult to get, and it was gonna be very difficult to convince him to want that help. Um, so like all of you, I learned through the school of hard knocks that if I was gonna help him, I was probably gonna have to help change the system. So I got involved in advocacy really from the get-go. Um, started my own grassroots movement in Washington State called Mothers of the Mentally Ill, mommy, and through that work did some legislative advocacy work and just started to get to know people, including Lisa Dalius at Treatment Advocacy Center. She was director of advocacy at the time and has since become the executive director. So I started getting to know those in the advocacy world, and when this opportunity opened up last April, I actually started working for tech last April 1st. Um it was a really natural transition for me to start working with families across the country in attempting to navigate the very disjointed system. But in the in the process of doing that, um, it's been very clear that I also would really like to help families with their own coping. Um I do what I can to help them navigate in a very complicated and often unworkable system. Um and it it helps me and my life goals to also know that maybe I've helped a family member feel a little bit better in their own skin. Um so what I do is not just help them help their loved ones, but try to help them help themselves. So this project became a natural fit for me. As I was onboarding with tech and helping to create our new Family Resource Center, which went live in January. Brand new Joan C. Scott Family Resource Center is on Tech's website. Uh but I helped develop those resources. Um and as we were developing the resources, it became clear that I also wanted to include resources to help families cope with this super complex emotional roller coaster that we're all on. And I had heard about ambiguous loss while my son was still living and recognized it immediately as what I was experiencing, that I was experiencing this grief as though my son had died because he was so far removed from the son that had been my son all of his life. And so I felt like I was experiencing a death at the same time I was trying to save his life, and the ambiguity of that was very confusing. And somebody taught me the term ambiguous loss, and it was like a light bulb. I thought that's what this is. This is an ambiguous loss, and the grief that I'm feeling related to this loss is very much like the grief I would experience if somebody that I love deeply had died. But I didn't have any place to put that grief because there's no societal norms for how to deal with it. So when I was onboarding at TAC and I was working on the resources for the library, I thought, I would like to write something about ambiguous laws as one of our family coping articles for the for the new website. And so we did a little bit of research and located Dr. Pauline Boss, who coined the term back in the 70s and has written several books on the topic, and located her email address. And I emailed her at uh the University of Minnesota, and mostly I was asking, um, do you have any research that's specifically related to the ambiguous losses for those who are impacted by severe mental illness? And she wrote back and said, I assume you're asking this question because you'd like to teach on the topic, because we need we need a lot more people teaching on this topic. I'm 87 years old and I need more people who are invested in sharing information on this really important topic. And um, my response to her email was yes, I think I am interested in that. And so I was able to attend her online course at the University of Minnesota and get a certificate, um, having gone through the whole course, the online course, which included exams. And um from that course, I started to develop the materials that Treatment Advocacy Center is sharing. So at this point, we do have an article on our website in the Family Resource Center, and I know those links will be part of the notes from this podcast. Um, and there's also a video on TAC's YouTube channel that provides an overview of what ambiguous loss is and what the coping strategies are.

SPEAKER_02 14:16

Jerry, before Jerry, before you go on, can I just share? I mentioned this to you ahead of time. Um Dr. Boss is from Minnesota. I have never had the pleasure of meeting her or interacting with her as you have, Jerry, taking a class and so forth. Um, but she did, she's on the front page of my alma mater. I got my master's degree from the University of Minnesota. And you said 87 years old, she's a very vital 87-year-old person. And there's like uh six pages that are on all the things she has done, but also all the things she's still doing. So she's just a role model, a role model for all of us.

SPEAKER_00 15:02

And and you mention her in your in your book as well, in the last couple of pages and in fixed with children. Yeah, thank you.

SPEAKER_02 15:08

I do. I I also, just like Jerry, was referred to um by actually her next door neighbor, who is my book mentor, and he lived next to her and her husband. And uh her husband has now died, but he was a good friend of my book mentor. So uh Paul has suggested that I read, I just read the first book, Ambiguous Law. So I summarized that and learned a lot of things about it, and it fit exactly what I was going through. I felt like Jim died like at least three or four times, three times for the suicide attempts, which were very serious. Another time when he jumped off the building, broke his back, but also actually every time he had a relapse and ended up in jail or wherever he ended up, just multiple deaths. So ambiguous loss is huge in terms of describing what we're going through. So I'm really glad you're teaching about this, Jerry.

SPEAKER_01 16:06

Yeah, this is the the book, the book. If this is helpful, I don't know if my camera's gonna be. It's blurry.

SPEAKER_00 16:13

We can't see the camera's on blur, you got a blurred background.

SPEAKER_01 16:16

So that's why I have to be, yeah.

SPEAKER_00 16:18

Okay, I'll find an image of it and put it on the YouTube. But what is the name of the book?

SPEAKER_01 16:22

If you tell me called Lost, Lost, Trauma, and Resilience, therapeutic work with ambiguous loss.

SPEAKER_00 16:30

And that's uh Dr. Pauline Boss's book. Correct. Okay.

SPEAKER_02 16:34

I'm really glad there's another book because the one I read really hardly mentioned mental illness. So that one is more exactly about mental illness.

SPEAKER_01 16:43

No, it's not. It's not. So when I reached out and asked for any specifics uh about severe mental illness and the specific ambiguous losses related to SMI, um, she was able to point to a few sections in the book that do mention um mental illness, but it's the book is much broader than that. So the project that I'm doing is kind of taking it to a new realm. Um and I think it's it's really vastly important because of that. Because so I we haven't really defined what ambiguous loss means yet, and I'd love to do that before we go too much further so people aren't confused about what we're talking about. Um so an ambiguous loss is a loss that lacks clarity or resolution. So some examples of losses that lack clarity or resolution. The one that is probably the most relevant to the audience of this podcast is someone who is physically present but psychologically absent or so changed that they seem like they're gone. So a phrase that can help with understanding is gone but not gone. So when someone is gone but not gone, they are physically present, but psychologically or cognitively, or in the case of schizophrenia, it might be a bit of bold, psychologically and cognitively gone or so forever changed that it feels like they're there that at least that person that you used to know is gone. There's a new place, there's a new person there, but the person that you knew before is is feels like they're gone.

SPEAKER_03 18:40

So that's the really true to me is what you said about um about the societal norms, because you see, that's what I remembered 20 years ago when Nick first got sick. First of all, like I've said, people weren't really talking about these things very much then. But I was in this crazy limbo of I've lost my son, but I haven't lost my son. And I need to grieve this, but there's no way, there's no method, there's no customs for grieving this. And I would come across people who had lost a child and think, how can I even compare this to that? And there was just nowhere to stand.

SPEAKER_01 19:16

Right, right. And although it's not directly part of Dr. Boss's work, because of what you just said, Mimi, I want to bring up um something I learned in another training, which is that grief contests are a cruel exercise. And, you know, the comparison of grief, you know, the grief of having a loved one still living with SMI versus having a loved one who has died from suicide, that is a cruel exercise to compare grief. And part of what these coping strategies can do is unite us all in grief. Grief is grief, and how we cope with our grief can unify us regardless of the root cause of the grief. And so that's part of what society hasn't taught us very well. That when someone's grieving, they might need a shoulder to cry on, a lasagna, a box of tissues, someone to come clean their bathrooms, regardless of the cause of the grief. Right? So if someone dies, those are the kinds of things that people step up and do. But but friends and family don't necessarily step up and offer those things because they notice that we're grieving because our loved ones are really, really, really sick. Um, so part, you know, it's a little bit outside of the coping strategies of living with ambiguous grief, but part of what I can share in this forum is we can all help educate our friends, neighbors, and relatives about how to support people who are grieving, regardless of the nature of the grief, regardless of the cause of the grief, recognizing grief as grief and stepping in to support and hold space for people who are grieving, regardless of why they're grieving, and recognizing that some grief is caused by circumstances circumstances that are extremely ambiguous, meaning there is no clarity or resolution, but that doesn't mean that the grief is less than, right? And again, avoiding that whole grief contest thing. Grief is grief.

SPEAKER_00 21:56

You know, I I'm hearing, I'm hearing. Two really important aspects of the work of ambiguous loss. And one is the one you're you're talking about currently, which is how can friends and family support someone who's going through ambiguous loss, regardless of what kind of grief it is. And the other will be the coping mechanisms that you're you're going to share with us that you that you is probably what you teach. And, you know, when this is in in my book, but I don't talk about it on the podcast a great deal. There is the concept that I learned in family to family, Nammy's family to family, of something called a second hit of stress. When the possibility for schizophrenia is there in the DNA, if there's a second hit of stress, maybe it's what triggers it. We don't know. But at any rate, when my son, who I call Ben for public purposes, was uh six and his little sister was three, their father disappeared. Like called and said, Hi kids, it's daddy. I want you to know I love you. And then we never heard from him for 12 years. And we didn't know, we didn't know where he was. We didn't know if he had died. You know, Ben would say, you know, is daddy dead or alive? And I would say, I don't know. And we we looked everywhere and we, you know, all sorts of things. And it would be 12 years of, and I would wish he had died. So we could have had a funeral. So we could have had something definite that people would bring us lasagnas, and we could say, okay, it's a year since daddy died. Like I was jealous of widows. So that was like my first, our first, me and my little family, our first ambiguous loss. And people didn't know how to support us, even for that. And I imagine that's what Dr. Boss's book is more about. Um, but how wonderful that you become certified in coming to step in for TAC, which by the way, if you um if you're wondering what TAC is, we mentioned it, we'll say it again. It's the Treatment Advocacy Center. Uh, the work that you do for families dealing with severe mental illnesses, which is so uh, yeah, that's sort of my my recap.

SPEAKER_01 24:13

But yeah, that's a really important example of an ambiguous loss. Um, some other non non-SMI examples might be somebody who's away at war, uh, you know, any type of a missing person is gonna represent an ambiguous loss. And deaths that come from really, really unpredictable and abnormal circumstances also represent ambiguous losses. So, for example, Dr. Boss did a lot of work with family survivors of 9-11 victims, um, and those represent ambiguous losses, and a suicide death represents an ambiguous loss. Gotcha.

SPEAKER_02 25:00

So I wish that I wish that you would be giving this talk to general audiences. I'm sure you know all the things we do, the ones who are most interested are people like ourselves. But I wish that um that the average person, and maybe Dr. Boss does talk more to general audiences, but that they would know this too, because I think that we all have a lot of friends who think we're lucky compared to someone, you know, who you know, I have a friend whose daughter died of cancer, and she worked on raising money and raising awareness for her type of cancer up until almost, you know, right before she died. And that it was just a huge outpouring of everything. Everyone knew that you know, this beautiful young woman had died. And and I think that there's a lot, a lack of awareness that the people that are dealing with someone totally different is is a similar type thing. I think you're right, Jerry, not to compare. But I was at that time jealous, you know, that she had such a good death when Jim was still there, but it seemed like he was kind of dead too at the time.

SPEAKER_03 26:16

There's a lot of guilt and and there's implicit blame bouncing around, you know, there's a lot of things that that that uh contribute to that ambiguity.

SPEAKER_02 26:30

So then I would feel guilty that I felt that way about somebody else and or guilty that I kind of wish Jim you know had succeeded in one of his attempts because our lives are so miserable. But now I feel guilty because I feel lucky, because it's here.

SPEAKER_03 26:51

Are you sure you're not Jewish?

SPEAKER_00 26:53

I'm thinking the same thing. I think I think a lot of cultures have the guilt for the mothers built right in there.

SPEAKER_03 27:01

So, how does one process this complex form of grief when there is so little recognition of it?

SPEAKER_01 27:08

There are six coping strategies, and um that's a great segue. Um Dr. Boss makes it clear that even though they're listed in unorder in her book, they're not they're not linear. So you can address these coping strategies, you know, in any order and you know, all at once or one at a time or whatever. But I love what Mindy just said because it takes us into one of the coping strategies, which is to normalize ambivalence. So recognizing that you feel lucky and guilty at the same time as a normal experience of emotion. That would be a normal way to feel in such a complicated circumstance that represents an ambiguous loss, right? So it makes sense that you have some almost wishful thinking around somebody who gets a little bit more resolution because their loved one is actually died and there's a death certificate, and there was a ceremony, a celebration of life. Um, you haven't had that opportunity for resolution in the loss that you have. You've lost the son that you thought you had, you've lost the son that you had younger. Um, that's very much like a death with no resolution, right? So it makes sense that you have had some experience of almost envy over a mother who gets to bury their child, right? And so that that weird feeling of envy mixed with the weird feeling of guilt, mixed with the weird feeling of loss, is normal. All of that ambivalence makes sense. It's normal. So that's one of the six coping strategies. Um, Dr. Boss makes it really clear that it's hard because of the ambiguity, and we can't fix the ambiguity, which makes the world feel like an irrational place, right? We can't fix that irrationality that's coming at us. That's the ambiguity that we can't fix. So, what can we work on? We can normalize ambivalence. Um, the other five coping strategies, I'll Sam, and we don't have to go deep into each one. They are described in my video. Um, but they're to find meaning. So that would be asking yourself, what have I lost? And what does that loss mean to me? That's the exercise. Adjusting mastery, which is getting over the expectation that our relationships are going to be perfect or that we can be perfectly in control of all of our emotions all of the time, and we don't have to master our emotions. So, for example, why can't I just get over it and move on? Is an irrational, cruel question to ask ourselves. Of course, we can't just get over it and move on. Why would we be able to get over it and move on? So that adjusting mastery is the recognition that we're not gonna just master this. We're not gonna just, oh, I've got this, no problem. I'm gonna be fine, you know, stoic, right? So if we think we're master of everything, we're very stoic, right? So we're not gonna be, we're not gonna be master of everything. So we adjust that mastery and we let ourselves be human beings.

SPEAKER_00 31:03

We can have a little pity party once in a while, right? Right, exactly.

SPEAKER_01 31:08

Exactly. Um, reconstruct identity is one of the coping strategies. Who am I since this loss happened to me? And where do I now belong and contribute and and um feel connected in my in my life? I'm I'm a new person since this loss affected me. So how do I, if we don't reconstruct identity, we can get really stopped because it's like I'm not, I'm I I thought I was this like busy soccer mom, right? That was my life. I was a busy soccer mom doing all the mom things, and this roared into my life, and my identity doesn't fit me more. So if I don't reconstruct my identity, I'm stuck. I don't know how to be who I am, right? So that's one of them revived attachment um means living with the absence and presence of our loved one in a way that's very fluid. Um, and that one gets a little complicated. And then um we talked about normalized ambivalence. The last one is discover new hope. And my favorite aspect of that is something that Dr. Boss calls playing with ambiguity, finding activities that have inherent ambiguity in them and just sitting in it. And one that she gives us an example that I think is super fun is fishing. So you go fishing, are you gonna catch a fish? I don't know. Is it gonna be a big enough fish to keep? I don't know. How long are you gonna sit there? I don't know, right? There's so many unknowns in fishing, so that's a way to play with ambiguity. So those are the six coping strategies.

SPEAKER_00 32:53

I I love it, and I'm glad I was taking notes because I'm gonna put them in the show notes, but as well as the link to your YouTube video. But the thought that keeps going through my head is a book that was out decades ago called Necessary Losses. Just, I don't know if you I don't remember the author. I'm thinking it might be Judith Fiorst, but I'm not sure. But it was just about how as we go through the decades, like first we're a single person, and then if we choose that path and we're a parent, and then we're a parent of teenagers, so we're giving up being a parent of babies, and then, you know, or we're married, or then we're divorced, and we're always constantly um reconstructing our identity. I was talking with this at with my book club this this weekend because I am no longer the grandmother of babies, like the youngest one is five, and it's you know, uh I I had it's time to give away the puzzles that they can do with their eyes closed now and give them to another family. So they were always through life, we're always going through these necessary losses, but they're not all heartbreaking.

SPEAKER_02 34:03

So I was kind of lucky because uh I didn't have to totally reinvent myself when Jim got sick because I where I get my biggest help is from advocating that I was already a state legislator. And I my focus, however, was education, and I kept that focus, but I added mental illness. And so that changed, you know, a lot of my legislative agenda, but I already was there, and that really helped me. So I was able to talk about gentlemen's illness publicly, and that got a lot of other people talking about it. So I felt like I was making headway, so I didn't have to change what I was doing as much as most people.

SPEAKER_00 34:44

Yeah. You know, Mimi, and I I haven't ever asked you this. Uh, you know, in in your book, he came in with it, the the self-portrait on the cover is NYX. Yeah, nixed art. But you're a visual, an incredible visual artist. And does your art uh help you to cope with ambiguous loss? Is that like an an outlet that part of your identity that uh comforts you or uh yes, but not in a really tangible way, you know.

SPEAKER_03 35:15

I mean, uh it's just to me, and this sounds I hate hearing this come out of my mouth, but it's sort of like breathing, you know, it's just what I do and what I've always done. And you know, people ask me a lot with my book, oh, did it help you process everything? And it's like uh no, because I think, well, did you settle it? And and there's no settling it, but we each have our way of living, and my way of living is making art. And I do, and I would never have said this out loud when I was younger, but I do now in my old age here believe that uh that making art and the existence of art is the only thing that's gonna save us, and I don't mean just us moms dealing with what we're doing too, but I mean human beings, and I mean all the art. So I I I view it in a different way now. So sometimes when I think, okay, what have I done with my life? Well, I remember an interesting conversation I had with you, Jerry, where I asked you, how uh do you do this? I mean, Calvin's gone. Isn't there I mean, I'm not being really blunt. I said there isn't there a part of you that just wants to get out of this old the whole world of this now because it's like it's it is kind of your ticket out. And you told me that Calvin delivered to you your dharma, and that's your purpose, your why you're here. And so I think that Nick did too, and my dharma is very much making art, but now it incorporates this aspect of who I am. But it's a very live thing, this kind of grief. You know, it's it's not something that you put to rest.

SPEAKER_01 37:00

Yeah, so another one of I'm so sorry, another one of Dr. Boss's books is called the myth of closure. And and it's a really important aspect of the work. There is no closure, and closure is a myth anyway, but when you're talking about ambiguous loss, it's especially mythological to envision that there would ever be closure. So I love what you said about grief being an ongoing process. And I I'm teaching that in my cohort groups who are working with these six coping strategies, that it's the processing of the strategies that is the work and it's ongoing. And like, you know, there are questions, they get homework every week. Um, and the the homework has questions in it. And I've tried to make it clear that answering the questions is not the point, it's contemplating the questions. So the process of contemplation of those questions is how the ambiguous loss is processed and how these coping strategies become part of your everyday life through the contemplation. And I love that you asked Mimi about her art because each time I give a homework assignment, I provide a list of possible methods for considering that contemplation. And the methods always include journaling, poetry, music, art, um meditation. Um, one person said they were they were doing the contemplations while swimming, and I said, yes, that is me. Um I'm I do a lot of my contemplations while I'm surfing in the ocean. Um, so I love that you brought up the art because yes, that can absolutely be a mechanism or a tool for these contemplations that are lifelong and ongoing. You don't check off the boxes and say, oh, I reconstructed my identity, I'm good now. Or I normalize my ambivalence about those two conflicting emotions. So I'm golden, you know, moving on. It's it's life work.

SPEAKER_02 39:18

So, Jerry, I have to ask you, do you have in your classes mostly people new to mental illness, or do you get people also that are like us, but maybe haven't had a chance to process and they've been bottling it up all their lives? What's the profile of your students?

SPEAKER_01 39:38

That's a great question. Um, and right now I have a cohort of 25 folks. Most of them look a lot like you guys. Um, most of them are moms of adult children who have been dealing with a severe mental illness for for quite a while. Um, but there are also siblings. There are also um uh those who have loved ones who are life partners who have mental illness. Um you have to be ready. And I'm not sure somebody brand new to a diagnosis is gonna be ready to do this work. They're still in shock, right? They're still in the immediate shock of their new reality, and they're not gonna be ready to really think about how their family roles, rules, and rituals are all gonna change. They're just trying to figure out how to get out of bed in the morning and get through the day and maybe make a tiny bump of progress and not slip. Right.

SPEAKER_00 40:44

You know, or stay safe, or stay safe sometimes. It depends on where they are. So we have about five minutes left, and I want to make sure that I I can just imagine so many listeners are like, how do I get to be in her cohort? What do I do? So I want to make sure that you uh will fill us in on how people can get in touch with you and also to give you time. I mean, there's no hard out in five minutes, just giving you a guideline. But um, if there's anything else we haven't asked you about that you want to tell us about. So, first tell us how people could be a part of this wonderful cohort that you offer.

SPEAKER_01 41:20

One one great way to keep in touch with the work of our Treatment Advocacy Center helpline and you know, any of the trainings and offerings that we have is to join our Facebook group. So we have a TAC family support group on Facebook that you can join, and that's where we would push out information about opportunities like this. Um you can also seek support from our helpline team by going to our website and filling out a get help form that's right there in the Family Resource Center. You can also send an email to help at treatmentadvocacycenter.org. So those are ways to get in touch with us.

SPEAKER_00 42:13

Awesome. What have we not asked you that you want to talk about?

SPEAKER_01 42:18

I want to read this because it's from the article that I wrote about ambiguous loss, and I think it's really relevant to this audience. If an ambiguous loss isn't recognized and supported, grief gets stuck. Effects can include depression and anxiety, hopelessness, a confused identity, ambivalence, insecurity, and lost trust in the world as a fair and rational place. And I know all your listeners have experienced all of those things because the grief that goes with having a loved one, with schizophrenia, or another brand of severe mental illness comes with all of that. So the first step, and this would be even for the newbies, is to just recognize I am experiencing ambiguous loss. That's what this is. It has a name, and it's not because there's something wrong with me. It's because I'm a human being experiencing something that is irrational, unexpected, and without resolution. So there's nothing pathological about me for having a really hard time with this brand of grief. I'm normal. To be struggling with this brand of grief makes me normal under the circumstances because these are very Abnormal circumstances. So an ambiguous loss is a loss related to our relationships, not something to do with an inability to like maintain our own mental health, if that makes sense. We're not failing to maintain our mental health. It's that we are struggling with something that is so far outside the norm that we need help. And that means help from community, um, help in our relationships in order to not stay stuck.

SPEAKER_00 44:38

I I love that because one of the things I do when I'm not doing this, I have sort of a multi-potentialite life as many of us do. And I teach emotional intelligence on the corporate level. And um the first two steps are self-awareness and self-management. And one of the things we teach is that when you can name the emotion, you can begin to have some control over it. So that naming, even with a three-year-old, if they can, or three or four, whenever their brain is ready to name the emotion, is the beginning of self-management to say I'm feeling jealous or I'm feeling, you know, feeling angry. And so it isn't just sad, happy, and mad. Like there's many, many emotions. And the more you can, when you can name it, you can begin to feel like you can get a handle on it. And so having a name, ambiguous loss, I think is very, very powerful because if it's a name and I'm feeling it, I must be normal, which I think is great because the worst thing to do is have this terrible feeling and then feel like you're terrible because you can't even name it, like you don't even know what it, or you're feeling two things at once, or all of those things. So this is really, really important work. Um, I, you know, Mimi, Mindy, anything to to add to close? I just want to thank you for sharing this. I think people will find it really valuable.

SPEAKER_03 45:54

That's it's a powerful episode. Thank you, Jerry. Yeah, I mean, I could just talk with you about this forever, but it's yeah, I I just encourage people listening to think about this and and look uh look into the information that we're putting out here. Because if somebody could have taken me by the hand 20 years ago and sort of explained this, because you do in in the in the experience of having a loved one, especially a child, get serious mental illness, there are many, many, many times where you just feel, am I losing my mind? Do I not know what's real, what's up, what's down? And then our emotions are so haywire about it because it is ambiguous, the loss, that it's impossible to process. And I think that this will help. Yeah.

SPEAKER_01 46:43

I had a client reach out through Helpline recently who said um their adult child was being hospitalized again for the fourth time in two months. And she said, every time this happens, it feels like a death. And that mom had never learned the term ambiguous loss, but she did by the end of that phone call. And I think it gave her some measure of comfort to just recognize that calling it a death um was valid. I think she felt a little guilty about calling it that. And once I had explained just a little bit about ambiguous loss, she felt validated that yes, it is like a death.

SPEAKER_00 47:26

That is what it's like. Kind of peels back the layers of the complicated way we feel. You know, I went from being the mother of two successful children to being the mother of a neurotypical child and a child that I didn't know what his still don't know what his future will hold. Still love him, still. I mean, he's there giving his commissary food to the newbies so they don't feel uncomfortable. I mean, that's my that's my giving kid, you know. Um, but yeah, that I I love the the six steps because it does deal with, you know, the the change in our own identity and and just feeling guilty about whatever we're feeling and all of that. So this is very important work. It's help at treatmentadvocacycenter.org, the Facebook group, TAC Family Support Group. And while you're on Facebook, make sure you join our group, Schizophrenia Three Moms in the Trenches. Just do a search and we'll pop up. And uh, and we Jerry Clark, thank you so much for joining us.

SPEAKER_01 48:29

Thank you, Jerry. You're very welcome. I really enjoyed it. I'd love to share one more quick little anecdote. At the end of last week's session, a woman who's been very quiet the whole time said, Watching all of you try on your emotions makes me think maybe I can too.

SPEAKER_03 48:51

Oh, wow. Nice. That's why we all gotta keep talking.

SPEAKER_00 48:55

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.