Jerri Clark: Ambiguous Loss and When Mental Illness Steals Someone You Love

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Tony Mantor. This is where understanding begins. If this kind
of conversation matters to you, follow the show so you
don't miss what comes next. Joining me today is Jerry Clark,
author of Gone Before Gone, When Mental Illness Steals Someone
You Love. Thanks for joining us today, Yeah, thank you
for having me. Oh, it's my pleasure. I understand you
have written a book. Can you give us a little
information on it.
I have just authored a book called Gone Before Gone,
When Mental Illness Steals Someone You Love. And this book
is an homage to my son Calvin, who died when
he was twenty three years old after a four years
struggle through the mental illness treatment system that was never
built to rescue him.
So I really lost my son three ways.
I lost him when he was nineteen to his first
psychotic break and an illness that took him from us
fast and wickedly furious. It was from the get go
a wicked heart illness. So I lost him first to
the illness, and then I lost him to the system
that was not structured in a way that was going
to rescue him from this really challenging illness.
And then I lost.
Him to suicide when he was twenty three, after that
four year struggle. So the title of my book, Gone
before Gone, exposes those layers of loss that I lost him,
and then I lost him, and then I lost him.
He was gone before he was gone.
I talked to families all the time who are in
that middle space where they're loved ones with severe mental
illness are still alive, but they are forever changed by
their psychiatric conditions. Right, those families are in a space
of grieving the loss of the loved one that they
knew and the person that they believed would be in their.
Family forever in a certain way, who is no longer
that person.
So they are grieving losses where someone is gone but
not gone and might come back as the person they
once were, and they might not.
So that liminal space.
Of loss is where ambiguous loss happens.
How did you take something that so many people think about.
Of course, that's writing a book and actually turn it
into something real. What did it look like for you
to go from the idea to sitting down and putting
structure around it, in other words, pencil to paper. So
what did that process look like?
When I started working for Treatment Advocacy Center almost three
years ago, I started talking to families who were expressing
grief that they could not explain. I remembered learning this
term ambiguous loss while my own son was still living,
and I wanted to give them more about what that
might mean.
What was your journey like putting this together?
I started researching it, and I came upon the work
of doctor Pauline Boss, who coined the term ambiguous loss
and created some concepts for coping with it. I contacted her,
and three years ago she was eighty nine, now she's
ninety two, and I told her how I had lost
my son three ways and how her term ambiguous.
Loss had been useful to me.
But I wanted to know more, and I specifically wanted
to know if she had done any specific work with
families of loved ones with severe mental illness. Her answer
was not really, And I'm so glad you're interested in
this topic, and I presume you're interested because you'd like
to teach on the topic, so I hope you might
take my course.
Did you wind up taking the course I did?
I took her course from the University of Minnesota and
became certified to teach about ambiguous loss and I did that.
I started teaching.
Seminars through my job as something that we offer to
families impacted by these losses.
So have you been doing seminars now, and if you have,
what has been the results of doing them.
I have now done six seminars. These are eight week
online seminars. In the process of doing those seminars, I
realized there was a lot more that I could offer
these families who are trying to learn how to utilize
these coping strategies. So I started to kind of think
about how the work that I had built into a
might become the structure for a book. And I wasn't
really sure how it was going to form until a
year ago. On March eighteenth of twenty twenty five, which
was the sixth anniversary of my son's death, I was
very busy. In fact, I had an ambiguous loss seminar
that day that I was scheduled to teach, and I
did teach, but otherwise I did my day. By the
end of that day, I was becoming debilitated, and I
wasn't even really sure.
Why with these emotions overtaking you. I'm sure that you
had time to reflect after you did, what did you determine?
It struck me all at once that although I was
teaching people to see their grief and give it some
time and some space, I had literally not done that
on the anniversary of my son's death. So I canceled
the rest of my week and thought that I was
probably going to spend the rest of the week in
bed weeping, but I couldn't sleep. I came into my
office and I sat down at my laptop at something
like four or five o'clock in the morning on one
of those days.
And I just started typing.
And the first words that I typed were on the
night I first lost Calvin, And I started typing about
what it was like to lose the sun that was
sitting in front of me behind his own eyes as
he was lost in his psychosis. And I started to
realize that my own story was a story of ambiguous
loss that could guide people toward their own self healing,
and that became the structure for telling my story. At
the same time, I provided guidance for other families managing
this grief beyond belief.
How do you define ambiguous loss in a way people
can truly understand? And once someone recognizes they're living through it,
how do they begin to heal from something that doesn't
really have a clear ending.
Indeed, this is a challenging process and I in no
way will share my book as a quick fix or
you know, a ten minute pathway to healing. You know,
it is not that kind of book. This is a
deep journey into yourself. And I'm very clear with my
readers that I'm here for you, but this will challenge you.
An ambiguous loss is a loss that lacks clarity and resolution.
The ambiguity is in the circumstances of loss and is
therefore external to the person who is feeling the grief,
and it's the ambiguity that cannot be fixed. So, for example,
if your loved one is lost in psychosis, it is
as though they are gone but not all the way gone,
and you're not really clear on when or whether they.
Might come back to you. As the person that you
know right right.
So the ambiguity is in the circumstances of the person
you love and their illness. It is not my grief
that is ambiguous. It is the circumstances of loss that
are ambiguous. And it's the ambiguity that I cannot fix.
Okay.
So that's the part of the definition that means it
lacks clarity.
Before we even get into defining it, I want to
start where the listener is. There are people listening right
now who feel like they've lost something or someone, but
they can't fully explain it. It's not a clear goodbye.
It's not something people around them always recognize, but it
still hurts. For those people, what are they exactly feeling?
And for someone either going going through it now or
just beginning to realize it, what should they expect from
a loss that doesn't really feel like a loss but
yet it is.
Yeah, I want to add a word to the mix,
and that word is guilt.
Okay.
And part of the reason that I.
Got really invested in this work is I was on
a lot of social media networks where family members of
loved ones, especially with schizophrenia, would say something like this,
I feel like my son has died while I'm still
trying to save his life, right, And I feel really
guilty about grieving while he's the one who is suffering so.
Much, right Right, Okay, that makes sense.
So part of the coping is go ahead and acknowledge
this is a grief experience.
Sure.
The very first coping guidance is name the losses.
What have I lost?
I've lost the relationship that I.
Had with my son before he got sick.
I lost the future that I imagined for him. Sure,
I lost a sense of safety and predictability.
These are intangibles.
It's not the same as I lost my dad because
he died from cancer and there's a death certificate, right,
that gives some resolution to that loss.
So you're grieving for a person like they have died,
but yet they're still alive. Yeah, that is a very
tough scenario to handle. Yeah, they're physically present, but mentally emotionally,
they've gone somewhere so dark that it feels like you've
already lost them. So how do you begin to cope
with that? And how do you bridge that gap when
there's no clear line between holding on and letting go.
The first step really is to acknowledge the ambiguity and
accept the ambiguity.
And accepting the ambiguity doesn't.
Necessarily mean that you accept the circumstances as well. It
is what it is right, because that feels really cruel
when something really rough is happening. So you accept the
ambiguity and you recognize, I have lost things I never
expected to lose. I have lost that predictability, I've lost
that safety. I've lost the closeness of the relationship that
I had with my loved one before they changed a lot, right,
So you accept those losses, and then you start to
seek meaning from those losses. So for me, in my seminars,
I share a photo of a place that I hike
frequently on the Oregon coast, and there's a fence row
up on a sand dune base sickly that I followed
for years, loved the vistas. All at once, in a
single weekend, a humongous sinkhole developed on this path that
I had walked hundreds of times.
The ground collapsed.
Okay, the meaning I made from that picture related to
my son's illness is that's what it felt like.
It felt like everything that.
I believed to be solid ground had gone out from
under me, and there no longer was anything solid in
my life, nothing I could count on anymore in the
structure of my life. So acknowledging that doesn't fix the situation,
but it gives me permission to grief.
Who wouldn't grieve.
If the grounding of their life went out from under them?
Of course, I'm experiencing loss and grief right.
When we think about traditional grief, people often talk about
the five steps denial, anger, bargaining, depression, and then eventually
some level of acceptance. In a situation like this, when
they're grieving for someone that is still here, this kind
of loss isn't clean. There's no finality to it. So
when someone is going through this, are they experiencing those
same stages or is this a completely different kind of
emotional process.
In ambiguous loss coping, the work is entirely nonlinear.
So there are six coping.
Guidelines that I learned from doctor Pauline Boss and that
I share with my seminar groups, and that I share
through my book. I make it clear, as doctor Boss
made it clear, that these are not linear. It is
not step one. Check, got that done. Now I'm moving
on to step two. It doesn't work like that. Is
more like a mobius strip where all of the coping
guidelines sort of interface with one another as you journey
on in this learning to cope place, and coping does
not bring resolution, and this can be disappointing, and it
has been disappointing to some of my some of our participants.
I had one woman in session number eight say to me,
I thought you were going to cure my grief, and
now I realize I'm just at the beginning of learning
to live with my grief. So it is never about
getting over the grief. It is about learning to accept
grief as a lifelong companion.
And how do you.
Walk alongside a grief that is unresolvable.
And still experience all of the.
Other aspects of life, including joy, including excitement, including you know,
whatever else.
Comes along in your life, so that the grief part
of your.
Life doesn't consume you and become the only identity that
you have.
I say this to a lot of people. Healing doesn't
mean the event never happened. It just means it no
longer defines you moving forward. But in a situation like this,
where the loss isn't clear and it may not ever
fully resolve. How does someone actually get to that point?
How do you begin to heal while also accepting that
this may have changed your life, but it doesn't have
to define the life that you still get to live.
I address that directly in the book, and the question
that I ask at the opening of the book I
ask again at the end of the book, And that
question is this, what is it that you are not
doing because Grieff has gotten in your way?
Right? Okay, yeah, I like that.
So you know when you've started to heal, when you
start to put agency toward that whatever that thing is
that you know in the depth of your being is
a thing that you.
Ought to be doing with your life.
Right, and you're no longer frozen in a place where
you cannot proceed with your own life.
Balsom plans.
This isn't a loss with an ending. It's something that's
still unfolding every single day. For that person on the
outside of it, there can be a lot of guilt
in even thinking about moving forward. They also could have
that feeling of if I start living again, am I
leaving them behind and abandoning them? So how does someone
navigate that space where they still can care deeply, but
also begin to live their own life again.
The beginning of that is and I tell my participants
to write this on a sticky note and put it
on their bathroom mirror. This is not my fault, right right,
This is not my fault. This illness is not my fault.
These circumstances are not my fault.
This is not my fault. So separating yourself from blame
is a beginning.
And then as we move through the coping guidelines, the
one that I think people in Western culture struggle the
most with is called a just mastery, And adjust mastery
means to recognize when you're trying to control something that
is not within your scope of control, and to let
go of trying to control those things. Because we spin
ourselves out of energy trying to control things that aren't
within our scope of control. So now, adjust mastery doesn't
mean let go or stop trying. It means get real
with what is possible within your sk of control. And
so it means if your loved one, let's say your
loved one is psychotic.
And homeless, okay, are.
There actions you can take to try to motivate either
your loved one to shift something or to motivate the
system to support your loved one in a different way.
After you've examined the options available to you, you have.
To let go.
And then there's another adjacent coping guideline, which is to revise.
Attachment right right.
So you cannot be attached to well, if I do
this perfectly right, everything.
Will go the way I want it to go.
If you cling to that, you also will spin yourself
out of energy. So you do what you can with
what you know when you know it, and then you
have to revise your attachments. You have to adjust your
mastery and recognize that the outcome is ultimately not yours
to control. And so once you have relieved yourself of
that burden which is all based in guilty.
If you believe that it is.
Yours to fix this unfixable situation, you will be riddled
with guilt if the outcome is not what you want. Right. So,
once you relieve yourself of that burden of guilt and
over responsibility, you create more space in your life for
some other things.
Have you released the book yet?
Yes, the book was published at the end of February.
February, Okay, Now, how do people find it so they
can buy it. So it is.
Available on Amazon, so if you're an Amazon user, it's
easy to look up by title and or my author name.
My publisher is called the Sager Group, which is the
Sager Group okay, and it's the sagergroup dot net. And
if you go to that web site, there's a bookshelf
and you click on the blue and purple book with
the owl on the cover that says gone before Gone,
and that will open all of the options for purchasing
the book as an ebook, a paperback, or a hardback.
And there's an audiobook to come. I'm going to be
doing an audio book, I hope by.
The end of the year.
Is it in any of the bookstores yet or is
it still just online?
It's a good question.
There is effort underway to have it placed in some bookstores,
and that's something that readers can do in their local
communities to try to get the book place in bookstores
and in local libraries. But it's a very local process
to get a book placed. So if you want the
book right now, look online. If you want it to
be more broadly available in your community, encouraging bookstores.
And libraries to stock.
It, you know, would be wonderful, wonderfully helpful.
We've talked about a lot of the weight behind them.
Now I want to shift into the experience of the reader.
When someone picks up your book, they're coming in with
their own understanding, maybe even confusion about what they're going through.
What do you hope that they feel or recognize at
the beginning? How does that evolve as they go deeper
into it, and by the time they finish, what kind
of shift do you hope that they've experienced.
I think some people who pick up my book will
expect it to be a memoir, and there are elements
of memoir in it, because I do share some intimate
storytelling from my own lived experience as another sure, and
I think readers are becoming pleasantly surprised that My Journey
is actually a way to reflect their journey back to them.
Right.
It is a self help book, and every few pages
there is a pause place that carefully delineated in the
way that the book is structured, and it's called do now,
and these are questions to contemplate.
There's some breathing exercises.
There's suggestions if you want to do a written journal
or an audio journal, or.
If you want to do art.
There are suggestions for how you might work your way
through the topics so that you're on a journey of
self discovery. At the same time you're learning how I
went through that journey of self discovery. So the book
becomes a reflection back on the reader, and I am
being told by my readers. Feels like an intimate conversation.
Nice. Nice when someone finishes your book without giving anything away.
Do you see it as a moment where they can
sit back, not only reflect on your live experience but
also their own And do you think it helps them
find any sense of clarity or closure or is it
more about helping them understand what they're carrying so they
can begin to move forward.
Closure is a myth, and doctor Pauline Boss, who found
an ambiguous loss theory, wrote a book called the Myth
of Closure. OK, so, closure, I'm sorry, is not going
to be something you're going to find through this process
of coping.
With ambiguous loss. How to move onward? I hope?
So, how to address the question of what is it
that I haven't been doing because grief has gotten in
the way, I hope so. And then the other thing,
I really hope people feel inspired forward as they move
through the book, is how to cultivate a more empathetic community.
Yes, that would be really nice because it is needed.
And at the yeah, at the end of the book,
I have a section called Steady Group Guidance, which is
some really specific guidelines for how to use this book
to create a support network in your own community. So
there's some prompts and there's some guidance about how to
use this book to create a group of folk who
will continue in this journey of coping with ambiguous loss together. Right, Right,
I hope that my book will help some people come
out of the shadows, because there is so much fear,
there's stigma, there's discrimination, isolation that comes from all of that.
And so I know from my Ambiguous Loss some of
our participants that some families in these really challenging circumstances
get more and more isolated. And you do not fully
heal in isolation. Right, We heal as human beings in community.
And so we can start with self work, We can
start with these sort of inner contemplations, and then to
take it to the next.
Place, we need to heal in community.
And so I actually provide guidance about how to talk
about ambiguous lot. One of the things that's come out
of my seminars is a lot of families isolate because
they don't want to be asked how are the kids okay?
When nothing is okay?
And so there's brainstorming in the book about how you
might respond to that without burning out your own energy.
So how we talk to our friends, how we communicate
within our families, and how we cultivate an empathetic community
is all addressed good in this book.
Well, this has been a powerful conversation. I really appreciate
you taking the time to join us today.
Thank you so much.
I really appreciate the opportunity to share this information. I
know there's a lot of families in need out there,
so I hope my book is helpful.
Well, it's been my pleasure. Thanks again, a sincere thank
you to our guests for sharing their journey. If today's
conversation helped you see the world a little differently, then
we're doing exactly what we hope to do. Until next time,
keep believing, keep learning, and most importantly, keep asking yourself,
why not me