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Speaker 1: What if everything you thought you knew about autism and

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Speaker 1: mental health wasn't the full story. Today's conversation might change

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Speaker 1: the way you see it. This is why not me

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Speaker 1: embracing autism and mental health worldwide, real conversations about autism,

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Speaker 1: mental health and the stories that shape our lives. I'm

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Speaker 1: Tony Mantor. This is where understanding begins. If this kind

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Speaker 1: of conversation matters to you, follow the show so you

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Speaker 1: don't miss what comes next. Joining me today is Jerry Clark,

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Speaker 1: author of Gone Before Gone, When Mental Illness Steals Someone

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Speaker 1: You Love. Thanks for joining us today, Yeah, thank you

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Speaker 1: for having me. Oh, it's my pleasure. I understand you

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Speaker 1: have written a book. Can you give us a little

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Speaker 1: information on it.

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Speaker 2: I have just authored a book called Gone Before Gone,

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Speaker 2: When Mental Illness Steals Someone You Love. And this book

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Speaker 2: is an homage to my son Calvin, who died when

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Speaker 2: he was twenty three years old after a four years

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Speaker 2: struggle through the mental illness treatment system that was never

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Speaker 2: built to rescue him.

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Speaker 3: So I really lost my son three ways.

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Speaker 2: I lost him when he was nineteen to his first

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Speaker 2: psychotic break and an illness that took him from us

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Speaker 2: fast and wickedly furious. It was from the get go

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Speaker 2: a wicked heart illness. So I lost him first to

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Speaker 2: the illness, and then I lost him to the system

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Speaker 2: that was not structured in a way that was going

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Speaker 2: to rescue him from this really challenging illness.

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Speaker 3: And then I lost.

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Speaker 2: Him to suicide when he was twenty three, after that

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Speaker 2: four year struggle. So the title of my book, Gone

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Speaker 2: before Gone, exposes those layers of loss that I lost him,

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Speaker 2: and then I lost him, and then I lost him.

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Speaker 3: He was gone before he was gone.

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Speaker 2: I talked to families all the time who are in

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Speaker 2: that middle space where they're loved ones with severe mental

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Speaker 2: illness are still alive, but they are forever changed by

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Speaker 2: their psychiatric conditions. Right, those families are in a space

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Speaker 2: of grieving the loss of the loved one that they

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Speaker 2: knew and the person that they believed would be in their.

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Speaker 3: Family forever in a certain way, who is no longer

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Speaker 3: that person.

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Speaker 2: So they are grieving losses where someone is gone but

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Speaker 2: not gone and might come back as the person they

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Speaker 2: once were, and they might not.

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Speaker 3: So that liminal space.

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Speaker 2: Of loss is where ambiguous loss happens.

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Speaker 1: How did you take something that so many people think about.

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Speaker 1: Of course, that's writing a book and actually turn it

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Speaker 1: into something real. What did it look like for you

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Speaker 1: to go from the idea to sitting down and putting

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Speaker 1: structure around it, in other words, pencil to paper. So

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Speaker 1: what did that process look like?

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Speaker 2: When I started working for Treatment Advocacy Center almost three

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Speaker 2: years ago, I started talking to families who were expressing

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Speaker 2: grief that they could not explain. I remembered learning this

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Speaker 2: term ambiguous loss while my own son was still living,

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Speaker 2: and I wanted to give them more about what that

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Speaker 2: might mean.

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Speaker 1: What was your journey like putting this together?

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Speaker 2: I started researching it, and I came upon the work

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Speaker 2: of doctor Pauline Boss, who coined the term ambiguous loss

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Speaker 2: and created some concepts for coping with it. I contacted her,

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Speaker 2: and three years ago she was eighty nine, now she's

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Speaker 2: ninety two, and I told her how I had lost

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Speaker 2: my son three ways and how her term ambiguous.

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Speaker 3: Loss had been useful to me.

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Speaker 2: But I wanted to know more, and I specifically wanted

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Speaker 2: to know if she had done any specific work with

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Speaker 2: families of loved ones with severe mental illness. Her answer

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Speaker 2: was not really, And I'm so glad you're interested in

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Speaker 2: this topic, and I presume you're interested because you'd like

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Speaker 2: to teach on the topic, so I hope you might

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Speaker 2: take my course.

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Speaker 1: Did you wind up taking the course I did?

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Speaker 2: I took her course from the University of Minnesota and

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Speaker 2: became certified to teach about ambiguous loss and I did that.

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Speaker 3: I started teaching.

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Speaker 2: Seminars through my job as something that we offer to

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Speaker 2: families impacted by these losses.

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Speaker 1: So have you been doing seminars now, and if you have,

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Speaker 1: what has been the results of doing them.

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Speaker 2: I have now done six seminars. These are eight week

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Speaker 2: online seminars. In the process of doing those seminars, I

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Speaker 2: realized there was a lot more that I could offer

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Speaker 2: these families who are trying to learn how to utilize

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Speaker 2: these coping strategies. So I started to kind of think

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Speaker 2: about how the work that I had built into a

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Speaker 2: might become the structure for a book. And I wasn't

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Speaker 2: really sure how it was going to form until a

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Speaker 2: year ago. On March eighteenth of twenty twenty five, which

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Speaker 2: was the sixth anniversary of my son's death, I was

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Speaker 2: very busy. In fact, I had an ambiguous loss seminar

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Speaker 2: that day that I was scheduled to teach, and I

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Speaker 2: did teach, but otherwise I did my day. By the

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Speaker 2: end of that day, I was becoming debilitated, and I

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Speaker 2: wasn't even really sure.

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Speaker 1: Why with these emotions overtaking you. I'm sure that you

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Speaker 1: had time to reflect after you did, what did you determine?

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Speaker 2: It struck me all at once that although I was

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Speaker 2: teaching people to see their grief and give it some

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Speaker 2: time and some space, I had literally not done that

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Speaker 2: on the anniversary of my son's death. So I canceled

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Speaker 2: the rest of my week and thought that I was

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Speaker 2: probably going to spend the rest of the week in

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Speaker 2: bed weeping, but I couldn't sleep. I came into my

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Speaker 2: office and I sat down at my laptop at something

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Speaker 2: like four or five o'clock in the morning on one

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Speaker 2: of those days.

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Speaker 3: And I just started typing.

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Speaker 2: And the first words that I typed were on the

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Speaker 2: night I first lost Calvin, And I started typing about

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Speaker 2: what it was like to lose the sun that was

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Speaker 2: sitting in front of me behind his own eyes as

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Speaker 2: he was lost in his psychosis. And I started to

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Speaker 2: realize that my own story was a story of ambiguous

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Speaker 2: loss that could guide people toward their own self healing,

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Speaker 2: and that became the structure for telling my story. At

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Speaker 2: the same time, I provided guidance for other families managing

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Speaker 2: this grief beyond belief.

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Speaker 1: How do you define ambiguous loss in a way people

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Speaker 1: can truly understand? And once someone recognizes they're living through it,

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Speaker 1: how do they begin to heal from something that doesn't

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Speaker 1: really have a clear ending.

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Speaker 2: Indeed, this is a challenging process and I in no

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Speaker 2: way will share my book as a quick fix or

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Speaker 2: you know, a ten minute pathway to healing. You know,

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Speaker 2: it is not that kind of book. This is a

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Speaker 2: deep journey into yourself. And I'm very clear with my

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Speaker 2: readers that I'm here for you, but this will challenge you.

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Speaker 2: An ambiguous loss is a loss that lacks clarity and resolution.

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Speaker 2: The ambiguity is in the circumstances of loss and is

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Speaker 2: therefore external to the person who is feeling the grief,

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Speaker 2: and it's the ambiguity that cannot be fixed. So, for example,

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Speaker 2: if your loved one is lost in psychosis, it is

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Speaker 2: as though they are gone but not all the way gone,

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Speaker 2: and you're not really clear on when or whether they.

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Speaker 3: Might come back to you. As the person that you

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Speaker 3: know right right.

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Speaker 2: So the ambiguity is in the circumstances of the person

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Speaker 2: you love and their illness. It is not my grief

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Speaker 2: that is ambiguous. It is the circumstances of loss that

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Speaker 2: are ambiguous. And it's the ambiguity that I cannot fix.

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Speaker 1: Okay.

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Speaker 2: So that's the part of the definition that means it

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Speaker 2: lacks clarity.

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Speaker 1: Before we even get into defining it, I want to

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Speaker 1: start where the listener is. There are people listening right

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Speaker 1: now who feel like they've lost something or someone, but

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Speaker 1: they can't fully explain it. It's not a clear goodbye.

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Speaker 1: It's not something people around them always recognize, but it

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Speaker 1: still hurts. For those people, what are they exactly feeling?

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Speaker 1: And for someone either going going through it now or

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Speaker 1: just beginning to realize it, what should they expect from

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Speaker 1: a loss that doesn't really feel like a loss but

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Speaker 1: yet it is.

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Speaker 2: Yeah, I want to add a word to the mix,

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Speaker 2: and that word is guilt.

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Speaker 1: Okay.

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Speaker 3: And part of the reason that I.

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Speaker 2: Got really invested in this work is I was on

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Speaker 2: a lot of social media networks where family members of

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Speaker 2: loved ones, especially with schizophrenia, would say something like this,

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Speaker 2: I feel like my son has died while I'm still

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Speaker 2: trying to save his life, right, And I feel really

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Speaker 2: guilty about grieving while he's the one who is suffering so.

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Speaker 1: Much, right Right, Okay, that makes sense.

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Speaker 2: So part of the coping is go ahead and acknowledge

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Speaker 2: this is a grief experience.

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Speaker 1: Sure.

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Speaker 2: The very first coping guidance is name the losses.

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Speaker 3: What have I lost?

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Speaker 2: I've lost the relationship that I.

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Speaker 3: Had with my son before he got sick.

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Speaker 2: I lost the future that I imagined for him. Sure,

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Speaker 2: I lost a sense of safety and predictability.

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Speaker 3: These are intangibles.

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Speaker 2: It's not the same as I lost my dad because

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Speaker 2: he died from cancer and there's a death certificate, right,

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Speaker 2: that gives some resolution to that loss.

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Speaker 1: So you're grieving for a person like they have died,

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Speaker 1: but yet they're still alive. Yeah, that is a very

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Speaker 1: tough scenario to handle. Yeah, they're physically present, but mentally emotionally,

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Speaker 1: they've gone somewhere so dark that it feels like you've

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Speaker 1: already lost them. So how do you begin to cope

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Speaker 1: with that? And how do you bridge that gap when

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Speaker 1: there's no clear line between holding on and letting go.

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Speaker 2: The first step really is to acknowledge the ambiguity and

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Speaker 2: accept the ambiguity.

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Speaker 3: And accepting the ambiguity doesn't.

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Speaker 2: Necessarily mean that you accept the circumstances as well. It

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Speaker 2: is what it is right, because that feels really cruel

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Speaker 2: when something really rough is happening. So you accept the

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Speaker 2: ambiguity and you recognize, I have lost things I never

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Speaker 2: expected to lose. I have lost that predictability, I've lost

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Speaker 2: that safety. I've lost the closeness of the relationship that

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Speaker 2: I had with my loved one before they changed a lot, right,

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Speaker 2: So you accept those losses, and then you start to

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Speaker 2: seek meaning from those losses. So for me, in my seminars,

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Speaker 2: I share a photo of a place that I hike

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Speaker 2: frequently on the Oregon coast, and there's a fence row

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Speaker 2: up on a sand dune base sickly that I followed

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Speaker 2: for years, loved the vistas. All at once, in a

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Speaker 2: single weekend, a humongous sinkhole developed on this path that

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Speaker 2: I had walked hundreds of times.

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Speaker 3: The ground collapsed.

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Speaker 2: Okay, the meaning I made from that picture related to

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Speaker 2: my son's illness is that's what it felt like.

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Speaker 3: It felt like everything that.

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Speaker 2: I believed to be solid ground had gone out from

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Speaker 2: under me, and there no longer was anything solid in

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Speaker 2: my life, nothing I could count on anymore in the

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Speaker 2: structure of my life. So acknowledging that doesn't fix the situation,

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Speaker 2: but it gives me permission to grief.

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Speaker 3: Who wouldn't grieve.

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Speaker 2: If the grounding of their life went out from under them?

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Speaker 2: Of course, I'm experiencing loss and grief right.

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Speaker 1: When we think about traditional grief, people often talk about

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Speaker 1: the five steps denial, anger, bargaining, depression, and then eventually

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Speaker 1: some level of acceptance. In a situation like this, when

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Speaker 1: they're grieving for someone that is still here, this kind

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Speaker 1: of loss isn't clean. There's no finality to it. So

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Speaker 1: when someone is going through this, are they experiencing those

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Speaker 1: same stages or is this a completely different kind of

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Speaker 1: emotional process.

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Speaker 2: In ambiguous loss coping, the work is entirely nonlinear.

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Speaker 3: So there are six coping.

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Speaker 2: Guidelines that I learned from doctor Pauline Boss and that

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Speaker 2: I share with my seminar groups, and that I share

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Speaker 2: through my book. I make it clear, as doctor Boss

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Speaker 2: made it clear, that these are not linear. It is

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Speaker 2: not step one. Check, got that done. Now I'm moving

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Speaker 2: on to step two. It doesn't work like that. Is

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Speaker 2: more like a mobius strip where all of the coping

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Speaker 2: guidelines sort of interface with one another as you journey

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Speaker 2: on in this learning to cope place, and coping does

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Speaker 2: not bring resolution, and this can be disappointing, and it

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Speaker 2: has been disappointing to some of my some of our participants.

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Speaker 2: I had one woman in session number eight say to me,

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Speaker 2: I thought you were going to cure my grief, and

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Speaker 2: now I realize I'm just at the beginning of learning

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Speaker 2: to live with my grief. So it is never about

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Speaker 2: getting over the grief. It is about learning to accept

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Speaker 2: grief as a lifelong companion.

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Speaker 3: And how do you.

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Speaker 2: Walk alongside a grief that is unresolvable.

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Speaker 3: And still experience all of the.

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Speaker 2: Other aspects of life, including joy, including excitement, including you know,

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Speaker 2: whatever else.

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Speaker 3: Comes along in your life, so that the grief part

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Speaker 3: of your.

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Speaker 2: Life doesn't consume you and become the only identity that

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Speaker 2: you have.

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Speaker 1: I say this to a lot of people. Healing doesn't

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Speaker 1: mean the event never happened. It just means it no

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Speaker 1: longer defines you moving forward. But in a situation like this,

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Speaker 1: where the loss isn't clear and it may not ever

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Speaker 1: fully resolve. How does someone actually get to that point?

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Speaker 1: How do you begin to heal while also accepting that

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Speaker 1: this may have changed your life, but it doesn't have

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Speaker 1: to define the life that you still get to live.

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Speaker 2: I address that directly in the book, and the question

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Speaker 2: that I ask at the opening of the book I

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Speaker 2: ask again at the end of the book, And that

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Speaker 2: question is this, what is it that you are not

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Speaker 2: doing because Grieff has gotten in your way?

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Speaker 1: Right? Okay, yeah, I like that.

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Speaker 2: So you know when you've started to heal, when you

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Speaker 2: start to put agency toward that whatever that thing is

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Speaker 2: that you know in the depth of your being is

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Speaker 2: a thing that you.

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Speaker 3: Ought to be doing with your life.

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Speaker 2: Right, and you're no longer frozen in a place where

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Speaker 2: you cannot proceed with your own life.

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Speaker 3: Balsom plans.

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Speaker 1: This isn't a loss with an ending. It's something that's

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Speaker 1: still unfolding every single day. For that person on the

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Speaker 1: outside of it, there can be a lot of guilt

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Speaker 1: in even thinking about moving forward. They also could have

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Speaker 1: that feeling of if I start living again, am I

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Speaker 1: leaving them behind and abandoning them? So how does someone

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Speaker 1: navigate that space where they still can care deeply, but

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Speaker 1: also begin to live their own life again.

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Speaker 2: The beginning of that is and I tell my participants

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Speaker 2: to write this on a sticky note and put it

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Speaker 2: on their bathroom mirror. This is not my fault, right right,

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Speaker 2: This is not my fault. This illness is not my fault.

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Speaker 2: These circumstances are not my fault.

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Speaker 3: This is not my fault. So separating yourself from blame

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Speaker 3: is a beginning.

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Speaker 2: And then as we move through the coping guidelines, the

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Speaker 2: one that I think people in Western culture struggle the

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Speaker 2: most with is called a just mastery, And adjust mastery

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Speaker 2: means to recognize when you're trying to control something that

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Speaker 2: is not within your scope of control, and to let

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Speaker 2: go of trying to control those things. Because we spin

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Speaker 2: ourselves out of energy trying to control things that aren't

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Speaker 2: within our scope of control. So now, adjust mastery doesn't

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Speaker 2: mean let go or stop trying. It means get real

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Speaker 2: with what is possible within your sk of control. And

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Speaker 2: so it means if your loved one, let's say your

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Speaker 2: loved one is psychotic.

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Speaker 1: And homeless, okay, are.

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Speaker 2: There actions you can take to try to motivate either

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Speaker 2: your loved one to shift something or to motivate the

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Speaker 2: system to support your loved one in a different way.

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Speaker 2: After you've examined the options available to you, you have.

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Speaker 3: To let go.

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Speaker 2: And then there's another adjacent coping guideline, which is to revise.

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Speaker 3: Attachment right right.

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Speaker 2: So you cannot be attached to well, if I do

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Speaker 2: this perfectly right, everything.

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Speaker 3: Will go the way I want it to go.

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Speaker 2: If you cling to that, you also will spin yourself

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Speaker 2: out of energy. So you do what you can with

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Speaker 2: what you know when you know it, and then you

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Speaker 2: have to revise your attachments. You have to adjust your

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Speaker 2: mastery and recognize that the outcome is ultimately not yours

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Speaker 2: to control. And so once you have relieved yourself of

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Speaker 2: that burden which is all based in guilty.

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Speaker 3: If you believe that it is.

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Speaker 2: Yours to fix this unfixable situation, you will be riddled

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Speaker 2: with guilt if the outcome is not what you want. Right. So,

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Speaker 2: once you relieve yourself of that burden of guilt and

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Speaker 2: over responsibility, you create more space in your life for

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Speaker 2: some other things.

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Speaker 1: Have you released the book yet?

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Speaker 2: Yes, the book was published at the end of February.

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Speaker 1: February, Okay, Now, how do people find it so they

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Speaker 1: can buy it. So it is.

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Speaker 2: Available on Amazon, so if you're an Amazon user, it's

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Speaker 2: easy to look up by title and or my author name.

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Speaker 2: My publisher is called the Sager Group, which is the

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Speaker 2: Sager Group okay, and it's the sagergroup dot net. And

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Speaker 2: if you go to that web site, there's a bookshelf

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Speaker 2: and you click on the blue and purple book with

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Speaker 2: the owl on the cover that says gone before Gone,

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Speaker 2: and that will open all of the options for purchasing

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Speaker 2: the book as an ebook, a paperback, or a hardback.

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Speaker 2: And there's an audiobook to come. I'm going to be

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Speaker 2: doing an audio book, I hope by.

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Speaker 3: The end of the year.

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Speaker 1: Is it in any of the bookstores yet or is

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Speaker 1: it still just online?

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Speaker 3: It's a good question.

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Speaker 2: There is effort underway to have it placed in some bookstores,

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Speaker 2: and that's something that readers can do in their local

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Speaker 2: communities to try to get the book place in bookstores

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Speaker 2: and in local libraries. But it's a very local process

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Speaker 2: to get a book placed. So if you want the

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Speaker 2: book right now, look online. If you want it to

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Speaker 2: be more broadly available in your community, encouraging bookstores.

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Speaker 3: And libraries to stock.

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Speaker 2: It, you know, would be wonderful, wonderfully helpful.

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Speaker 1: We've talked about a lot of the weight behind them.

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Speaker 1: Now I want to shift into the experience of the reader.

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Speaker 1: When someone picks up your book, they're coming in with

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Speaker 1: their own understanding, maybe even confusion about what they're going through.

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Speaker 1: What do you hope that they feel or recognize at

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Speaker 1: the beginning? How does that evolve as they go deeper

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Speaker 1: into it, and by the time they finish, what kind

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Speaker 1: of shift do you hope that they've experienced.

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Speaker 2: I think some people who pick up my book will

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Speaker 2: expect it to be a memoir, and there are elements

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Speaker 2: of memoir in it, because I do share some intimate

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Speaker 2: storytelling from my own lived experience as another sure, and

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Speaker 2: I think readers are becoming pleasantly surprised that My Journey

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Speaker 2: is actually a way to reflect their journey back to them.

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Speaker 1: Right.

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Speaker 2: It is a self help book, and every few pages

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Speaker 2: there is a pause place that carefully delineated in the

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Speaker 2: way that the book is structured, and it's called do now,

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Speaker 2: and these are questions to contemplate.

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Speaker 3: There's some breathing exercises.

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Speaker 2: There's suggestions if you want to do a written journal

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Speaker 2: or an audio journal, or.

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Speaker 3: If you want to do art.

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Speaker 2: There are suggestions for how you might work your way

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Speaker 2: through the topics so that you're on a journey of

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Speaker 2: self discovery. At the same time you're learning how I

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Speaker 2: went through that journey of self discovery. So the book

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Speaker 2: becomes a reflection back on the reader, and I am

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Speaker 2: being told by my readers. Feels like an intimate conversation.

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Speaker 1: Nice. Nice when someone finishes your book without giving anything away.

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Speaker 1: Do you see it as a moment where they can

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Speaker 1: sit back, not only reflect on your live experience but

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Speaker 1: also their own And do you think it helps them

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Speaker 1: find any sense of clarity or closure or is it

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Speaker 1: more about helping them understand what they're carrying so they

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Speaker 1: can begin to move forward.

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Speaker 2: Closure is a myth, and doctor Pauline Boss, who found

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Speaker 2: an ambiguous loss theory, wrote a book called the Myth

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Speaker 2: of Closure. OK, so, closure, I'm sorry, is not going

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Speaker 2: to be something you're going to find through this process

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Speaker 2: of coping.

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Speaker 3: With ambiguous loss. How to move onward? I hope?

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Speaker 2: So, how to address the question of what is it

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Speaker 2: that I haven't been doing because grief has gotten in

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Speaker 2: the way, I hope so. And then the other thing,

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Speaker 2: I really hope people feel inspired forward as they move

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Speaker 2: through the book, is how to cultivate a more empathetic community.

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Speaker 1: Yes, that would be really nice because it is needed.

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Speaker 2: And at the yeah, at the end of the book,

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Speaker 2: I have a section called Steady Group Guidance, which is

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Speaker 2: some really specific guidelines for how to use this book

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Speaker 2: to create a support network in your own community. So

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Speaker 2: there's some prompts and there's some guidance about how to

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Speaker 2: use this book to create a group of folk who

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Speaker 2: will continue in this journey of coping with ambiguous loss together. Right, Right,

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Speaker 2: I hope that my book will help some people come

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Speaker 2: out of the shadows, because there is so much fear,

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Speaker 2: there's stigma, there's discrimination, isolation that comes from all of that.

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Speaker 2: And so I know from my Ambiguous Loss some of

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Speaker 2: our participants that some families in these really challenging circumstances

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Speaker 2: get more and more isolated. And you do not fully

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Speaker 2: heal in isolation. Right, We heal as human beings in community.

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Speaker 2: And so we can start with self work, We can

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Speaker 2: start with these sort of inner contemplations, and then to

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Speaker 2: take it to the next.

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Speaker 3: Place, we need to heal in community.

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Speaker 2: And so I actually provide guidance about how to talk

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Speaker 2: about ambiguous lot. One of the things that's come out

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Speaker 2: of my seminars is a lot of families isolate because

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Speaker 2: they don't want to be asked how are the kids okay?

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Speaker 3: When nothing is okay?

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Speaker 2: And so there's brainstorming in the book about how you

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Speaker 2: might respond to that without burning out your own energy.

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Speaker 2: So how we talk to our friends, how we communicate

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Speaker 2: within our families, and how we cultivate an empathetic community

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Speaker 2: is all addressed good in this book.

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Speaker 1: Well, this has been a powerful conversation. I really appreciate

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Speaker 1: you taking the time to join us today.

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Speaker 3: Thank you so much.

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Speaker 2: I really appreciate the opportunity to share this information. I

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Speaker 2: know there's a lot of families in need out there,

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Speaker 2: so I hope my book is helpful.

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Speaker 1: Well, it's been my pleasure. Thanks again, a sincere thank

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Speaker 1: you to our guests for sharing their journey. If today's

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Speaker 1: conversation helped you see the world a little differently, then

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Speaker 1: we're doing exactly what we hope to do. Until next time,

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Speaker 1: keep believing, keep learning, and most importantly, keep asking yourself,

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Speaker 1: why not me