With vision loss, we experience a wide range of emotions.
In this episode, clinical psychologist, Dr. Ann Wagner
and Hadley's Marc Arneson, join us to share
how learning from and connecting with our emotions
can bring about healing and transformation.
I'm Ricky Enger and this is "Hadley Presents."
Welcome to "Hadley Presents Dr. Ann Wagner."
Thank you so much for joining us today on the show.
I'm glad to be here.
I've been eagerly counting down the days for this episode.
Aw.
I am. I'm really excited about this conversation.
Even some of the questions that we came up with,
I'm really excited to have this talk.
Honestly, I know it's not always easy,
and I'm sure in your experience you come across this.
It's not always easy or even comfortable
to talk about some of the difficult emotions
that can come with vision loss
and the importance of connecting with others.
I can't imagine it's always easy or comfortable,
but I think it's such an important conversation to have.
So I'm grateful to have you on the show today.
Thank you.
Dr. Wagner, Ann, I have some questions for you
that I was hoping we could run through,
but before we get to those,
do you mind just sharing a little bit about yourself?
Yeah.
I am legally blind due to retinitis pigmentosa,
it's an autosomal dominant form.
And I had genetic testing and it's PRPF3,
which means if you have this particular gene type,
you have the symptoms and any children you have
will have a 50-50 chance of inheriting the eye disease.
So my grandpa had five kids, three of them inherited RP,
and one of those was my mom.
My mom and dad had five children
and four of us inherited RP.
So I kind of grew up in a blind culture
where everybody understood
that retinitis pigmentosa primarily involves
progressive loss of the peripheral vision and night vision.
So we have worsening tunnel vision,
worsening night blindness.
In childhood is when the night blindness
is usually quite evident
and then the acuity is affected more
in our later teens, early 20s.
So my mom, her vision met the standards for legal blindness
when she was 16 due to the severity of the tunnel vision.
I was 18 when my vision loss met those requirements.
Growing up in this blind culture meant I had support,
I had people who understood what I was going through,
and the sighted people in our lives kinda knew
what we needed and what we didn't need.
And so I know how lucky I am for that,
and I have a lot of gratitude.
Currently, my vision is quite impaired.
I have end stage complications
that would take a while to explain, but I'm pretty blind.
I have some light vision left.
With ideal lighting conditions and contrast,
I can still make out some shapes,
but that's where my vision is at now.
Professionally, I am
a board-certified clinical psychologist,
and I've worked 26 years at the Minneapolis VA
Healthcare System on the PTSD clinical team.
In the field I'm considered a trauma specialist,
but everyone on our team was also considered a generalist.
I loved my work at the VA. I am now retired.
But even though I'm retired,
I'm still required to make a disclaimer
that the views I express today are my own
in my role as a citizen psychologist.
The views do not represent any official views
of the federal government
or the Department of Veterans Affairs.
I just felt I needed to say that.
But even though I'm retired, I'm still professionally active
with some consulting work and invited guest speaking,
particularly on topics related to mental health
and vision loss.
Speaking of that, I've had a chance to hear you speak
a few different times, and I've listened
to some of the conversations that you've had
and in some of your presentations.
You talk about this concept of complex grief.
I was wondering, just to get started,
do you mind sharing with me a little bit about
what that means and maybe how it relates to vision loss?
Yeah.
I think complex grief can resonate with a lot of people
experiencing any kind of progressive medical condition
where each incremental change in the condition
can mean it affects different areas of functioning.
So particularly with progressive vision loss,
every degree of peripheral vision or loss of acuity
can potentially result in additional losses
of independent functioning.
So with each loss of independent functioning
or an activity of daily living becoming more challenging,
there's going to be grief attached
to each of those with different meanings attached.
And so it's by no means simple. It is quite complex.
And there's a nuance there
that I don't think a lot of people are aware of.
But whenever we have to pause and do some problem solving
to do something differently, to try to figure out ways...
If we learn new blind skills,
is there a way we can continue
to do something independently?
Or the time it takes to utilize resources
or connect to supports to still engage in activities,
we value that time and our relationship
to time becomes an area of grief
in the sense that I know how I would most want
to spend my time.
And yet, to adapt and to move forward,
I'm going to have to dedicate some time
to the problem solving and to figuring things out.
So there's a loss there,
a loss of maybe what we call the freedom
of how we want to use our time,
and those are the things we do to adapt
and we make all sorts of sacrifices in life
to do things that are important
that may not be our preferred,
but it's part of that complex grief process.
It's fascinating.
I think you talked about some of the different challenges
that can come with vision loss,
and I know the day-to-day challenges.
I've heard a lot of folks talking about
trying to discover new ways to do things
that have now become more challenging.
I've also heard a lot of people that I've talked to
share that the emotional challenges
that come with vision loss
can be even more difficult sometimes
than the physical or practical challenges
that come with vision loss.
I know, emotions, we all have them, right?
Some are pleasant, some are not pleasant at all.
But I'm curious, do you mind sharing a little bit about
what our emotions tell us and is there something
that we can learn from those emotions?
Yeah. In fact, they tell us a lot.
They actually tell us who we are at our core
and what matters to us.
There's a principle that's shared
by a couple of different therapy models.
It's this principle or idea that emotions only show up
to tell us what we value,
what we hold dear, what matters to us.
The problem is that the more painful emotions,
we've been exposed to programming and messages and judgments
that somehow we're not supposed to feel what we feel
unless we're presenting as happy.
We've learned all sorts of avoidance patterns
or self-protective patterns that distance us
from our own core emotions
when actually they are so important to connect to
and to understand.
And so to illustrate, I use this idea every day myself,
and I used it in almost every course of therapy,
this foundational principle
of connecting to our core emotions
to listen to what they're telling us
and to process them in a naturally healing way.
I'd like to share stories in my examples
of how things work if that's okay.
Great, I'd love that. Yes.
Yay. Good.
I have a grandson who is almost two years old,
and when I connect to this truth
that I'm not able to see his face,
then a couple of emotions show up.
Helplessness and grief.
When I think about what are these emotions telling me
about what I care about, to start with,
the helplessness is a very important emotion.
It's probably the one we struggle with the most.
It's the one that shows up when we wish
we could control something that we really can't.
So it tells us two truths.
First, it tells us the truth about
the limits of our control.
And actually we only have control over one thing in life,
and that's what we choose to do
in this one moment right now.
That's it. We don't have any control.
If controllability was a scale, I'd say we have zero control
over the past because we don't have a time machine,
or the future because we don't have a time machine.
We have zero control over what people say,
what they do, what they feel or what they believe.
We actually have no direct control.
So really we have no control over anything
except what we do in this one moment.
The helplessness is telling me I can't control the fact
that in this moment I can't see my grandson's face.
But then helplessness always tells us a second truth.
That we care about something.
So it's trying to help us connect to that core deep sense of
where our most important values are.
Otherwise, it doesn't even show up
if it's not something we care about that we can't control.
That makes sense. Yeah. It's telling me
that I care about something.
So if we were to give a name to a person
who always told us the truth
and always also tried to tell us what matters to us,
we might call that person a friend.
Yet we have been taught to struggle with helplessness.
It shows up hundreds of times every day
because of the things we can't control.
And yet we've been taught to struggle with it
and to keep trying to control things we can't.
And that's wasted energy and can create suffering.
And that helplessness rarely shows up alone.
It almost always is going to show with other emotions
that will help with that second piece
of what is it that I care about?
So grief shows up in this example
where I can't see my grandson's face.
And the grief emotions show up to tell us
that we are holding an attachment.
We form attachments to people, to things and to ideas.
We have many attachments to ideas.
Our preferred ideas are wantings. We might call hopes.
We might give them different names.
But I clearly have an attachment to this idea
of being able to see my grandson's face.
So when life gives us information on our actual experience
and some truths show up that say that this idea
that you're attached to is not going to happen,
then we have to detach from that attachment
and let that idea go and that's grief.
Grief and loss.
And depending on how deep or meaningful that attachment is,
whether it's to a person, to a thing or to an idea,
the level of pain of that grief will be higher or lower.
So grief is telling us that when we're actually feeling it
and allowing it to flow like waves
it means we are connecting to truth.
We're not in denial. And that's important.
The helplessness and grief are showing up
when I connect to this idea and this truth.
I can't see my grandson's face and I wish I could.
So I'm going to go through the steps of connecting
how these emotions are telling me what I care about.
So I'll ask myself why does that matter to me?
And then I'll connect to this other idea.
Well, I don't want to miss a single nuance
of my experience with him.
And then I'll ask, well, why is that important to me?
And then I can feel when I'm connected
to the deep core, core values,
what I stand for is deep, enduring,
loving relationships with the people I love.
And for all of those, I wouldn't want to miss nuances.
But when I connect to that deeper core value,
openings always happen because there are going to be
other ideas that I can connect to then for
how I can act on that core value
even if this one idea cannot be acted on.
When I connect to that, often memories or ideas
from other people in my life might show up
that were meaningful to me.
In this example, when I connect to being a loving person,
I have memories of my mom, and my mom died in 2017
from pancreatic cancer,
but she was an incredible role model in my life.
We grew up on a farm and she worked hard on that farm
just like us, even though she was blind.
So my mom, by the time her grandchildren started showing up,
she couldn't see their faces.
From the day they were born, whenever she'd be holding them,
many times, she would say, "I'm going to braille your face."
And she would feel their faces.
Then as they grew up, she'd say, "It's been a while.
I'm going to braille your face to see how you're changing."
They just grew up knowing grandma
was going to braille their faces.
When my nieces were in their teens,
for some reason when they had school dances
or other events where they were going to dress up,
they liked to bring their makeup and clothes
to my parents' house to get ready there.
I'd be visiting sometimes,
and my nieces would hog the back bedroom and the bathroom
until they were ready and then they'd come out
all beautiful in their dresses and they say,
"Grandma, we're ready for you to braille us."
The room would just become filled with their giggles
and laughter and chatter and my mom's oohs and ahs,
as she brailled their faces, gently touched their hairdos,
felt the bows or ruffles, whatever their dresses were.
She'd ask them to describe the colors.
And the room would just be filled with joy and delight.
And it didn't matter one bit that she couldn't see them.
Those memories I connect to.
Yeah.
I have a grandson who is almost three years old.
From the time of his birth till today when I hold him,
I say, "I'm going to braille your face,"
and I touch his sweet face and his chubby cheeks
and feel his hair and his little hands and feet,
and I am just filled with so many emotions.
And again, emotions show up to tell us what we care about.
Yes, there's the grief and loss
of not being able to see his face, but also missing my mom.
I understand what that emotion is telling me,
and I respect it, and I even have compassion
for that emotion because it's affirming who I am,
and I also feel such gratitude for having such a loving mom.
I feel closer to her in those moments.
So every emotion tells us very important information
if we can open to it
and learn about our emotional world better.
Those are wonderful stories, Ann.
I so appreciate you sharing those stories
and just the importance of understanding
how our emotions show us what's meaningful to us.
I imagine though,
it seems like you've really developed a skill
to be able to step back and recognize the importance
of this emotion, and I think you said
even have compassion for it at affirming who you are.
I imagine for a lot of folks though,
it's tough to step back from these really difficult
and painful emotions like helplessness
and grief or sadness or anger and look at it
in the same way that you're able to do that.
I imagine sometimes getting other people
to help you understand what those emotions
are telling you could be really important as well,
whether that's a close friend or a professional.
I've heard you talk about this concept or idea
of village moments and connectedness
and the importance of relationships.
Do you mind sharing a little bit more about the idea
of village moments and why they're important,
particularly for folks living with vision loss?
Yeah.
I have this idea that in the very early years of humanity,
our ancestors were probably all in villages
where they felt seen and known and secure
with people knowing what things came easily for us
or what things were more challenging.
And when there was something weighing heavy on us,
we had people to listen and be there.
And we are still born as social creatures,
and of course we need a sense of belongingness.
There's a theory from the '70s
called the social buffering theory.
At least I think it was the '70s.
That when we have adequate social support,
and by that I mean emotional support,
it can buffer the negative effects of stressors
in our lives, even trauma level.
And that a lot of people think the support that's needed
is advice and that's not really what I'm talking about.
We need to feel a sense of safety and security
in our sharings of our deeper emotional pain
or even moments of joy.
Sometimes we just feel like,
"Oh, I want to share this story with someone,"
because it gives us that sense of belongingness.
When two people show up, being able
to share from this deep, real, and authentic place,
I call that village moments.
And it's where healing can happen,
and transformation can happen.
If we don't have people in our lives
that we can feel that level of security
or even within ourselves, if we've had so much programming
that we just don't feel safe to open up to that deeper pain
within ourselves, then find a professional.
But I like to share this idea by Diana Fosha.
She developed accelerated
experiential dynamic psychotherapy.
In some of her writings she talks about
how really the core of human suffering
is profound loneliness.
When we do experience something really painful
and we don't feel that sense of security
and safety that we can share and not feel judged
or have somebody still feel distant from us
because they're in their head thinking of advice to give us
instead of just really being with us,
we are going to learn all sorts of ways
to protect from the feeling of the painful emotion,
and we're going to feel that deep loneliness.
When you feel so alone with that kind of pain,
it's really painful.
So, I had many veterans over the years talk about
when we're processing trauma memories
or other healing work that they wanted to do in the therapy,
and I would share words from other veterans
to see if they resonated with them.
I'd tell them that some people say,
"Yes, there's incredible pain
related to the trauma memory itself,
but what's even more painful is feeling alone with it."
And I would have veterans start to cry at that point
and they're like, "Yes, I connect
to what those other veterans were saying."
And so this profound loneliness.
It's important to validate those experiences
and it's so important to feel heard.
If we don't have people in our lives
that we can feel that level of safety and security to share
and trust that we won't be judged
or that they're going to just give us advice
that we're not asking for,
then trying to find a therapist is highly recommended.
I like to help with stigma. It's decreasing.
I think every year the stigma
against seeking mental health care
is getting better and better and better
because so many people know it's healthy.
It's like you're going to exercise for your health.
You can seek therapy for your health.
I'm very open that I sought therapy.
People with vision loss
are at higher risk for anxiety and depression,
and I had more of the anxiety side to things here.
So I completed a course of therapy for anxiety,
and it was incredibly helpful and I felt heard
and understood, and that's so important.
Yeah.
And I love the concept
of village moments, this connectedness.
So that's kind of what we were made for
is what I'm hearing you say as well.
Yeah.
We were made for relationships and connection.
A lot of the folks that find us here at Hadley
are new to vision loss.
They're kind of new to this whole way of life.
Can you talk a little bit about
how that might even have more of an effect
on these feelings of loneliness or isolation?
Yeah.
Well, 10 to 20%
of retinitis pigmentosa gene types are recessive,
which means there isn't going to be another person
in their family probably.
Like I had this incredible blessing
of growing up in a blind culture, but most people are alone.
They don't have role models.
They don't know anybody else experiencing vision loss
and that would feel so, so lonely and kind of scary.
That's why resources and connecting to communities
that support people with vision loss is just so important.
I wouldn't want anybody to go through this alone.
That would be so overwhelming.
That's why I loved hearing about Hadley Helps
and your peer-to-peer program, connecting people one-on-one
so they can do their deeper sharing
or all the different things you're doing.
Foundation Fighting Blindness also has,
each state has its own chapter
and communities of support are happening through that.
There are resources out there.
And state services for the blind
or the vocational rehabilitation programs in most states
have vision rehab, rehabilitation services
that can also help with adjustment by experts who can help.
So that can help people feel
a little less alone and with people who understand.
Yeah.
Part of my job is just getting to know folks
and spending some time hearing their story.
When I hear people talk about, like
"I don't know anybody else who's visually impaired.
I'm kind of in this by myself,"
it just makes me want to feel like we're here
and we want to connect you with somebody.
I'm glad you mentioned our peer-to-peer program.
One of the women that I met, she shared
that she lives with her husband in the same house together,
and she has grown children
that come and visit quite frequently,
and grandkids that are kind of running around the room.
And she said, "With all these people in my life,
everything that's going on,"
she's like, "I've never felt so alone.
Because of my vision loss,
I don't feel like I have somebody to talk to about it.
If I could just spend time with somebody
who understands what I'm going through,
I think that would make all the difference."
And so we were able to connect her
in our peer-to-peer program
with somebody who had a similar eye condition
and similar life experiences.
And she said, "This was the missing piece for me."
Which is just so fulfilling to hear comments like that.
Yeah. And she was listening our core selves.
It's a theory, but I absolutely believe it's true
that we all have an adaptive energy
that we can connect to or wants us to connect to it
to help adjust and cope as part of resiliency.
And she was listening to her core self saying,
"If I just had somebody I could talk to
who might understand."
She knew what she needed, what feels healthy and healing
and what doesn't.
That's so lovely.
I just hope more and more programs can find ways to help
because the anticipated rates of people with vision loss
are growing as people live longer
and there's a lot of people experiencing vision loss
or who will.
That's right.
You know, I imagine, you know,
all this complex grief you talk about, all these emotions
that can just kind of overwhelm us sometimes
and with these challenges that come with vision loss.
I imagine it can sometimes consume you
even to the point where you feel like,
okay, this is who I am now.
It forces us to form new identity.
Have you felt that way yourself,
and what would you offer to folks
who might be feeling that way as well?
Yeah. It's such a good question.
When I started wanting to date, I would lead with,
by the way...
At that point, I wasn't using my white cane yet.
You couldn't tell by looking at me.
I would let people know, "Hey, I'm losing my vision."
And I led with that as if that was my identity,
because I wanted them to have a chance to say,
"Oh, I don't want that to be with somebody
with blindness in my life."
And yet, because of my own personal growth and work
and these concepts I learned from my professional work,
I absolutely no longer feel
like I have that internalized self-esteem
as somehow being less than.
Being surrounded by such a loving partner
who treats me as an equal
and just lovely friends and of course my family.
But what's helped me in particular
is this principle from narrative therapy
about the idea of how problems are external to who we are.
To recognize that the blindness,
it's an experience I'm having.
It's separate from me, the whole person who I am.
And it may walk alongside me
and it's going to have its effects
and each of those effects are an experience.
They're not who I am.
So I will refer to blindness moments of humor and hilarity
because they certainly help create
as well as, of course, moments of grief
and sorrow and other emotions of frustration.
But I am not the blindness. I'm Ann.
Our identities are really more about what do you stand for,
what matters to you.
And we can live those values in many, many different ways.
The disabilities or the limitations,
whatever word we choose to use to describe bodily changes
or losses of vision, those are just companions
that maybe we didn't want in our lives,
but we can actually, potentially at least, respect
and appreciate that they're external to us
and we can give them our own names.
I know mine, I'll be free in my transparency.
I tend to fret.
I'm a bit of a worrier. And that was part of...
So staying in my head with the worry thoughts of
what if this or what if that.
The what-ifs kind of keep me in my head,
and it is a form of distancing from my core emotions.
So I name my patterns.
I've recognized when that's showing up
that there's a need for me to slow down
and think about what is the core emotion really
that I'm trying to avoid here and to learn to be with it.
But I name all my protective patterns Melvin.
Melvin.
Melvin, yeah. So that's one of my Melvins.
No offense to anybody named Melvin. It's a fine name.
It just helps me smile
and it helps me relate to the patterns
in a completely non-judgmental way.
These patterns were programmed. None of us are to blame.
We've all been taught these messages
to try to avoid what we feel.
So that's one of my Melvins. And overthinking.
There's a lot of things, but I named mine Melvins.
What I encourage people when they're looking at the patterns
of things they're doing is just ask,
is this a valued activity?
Is it meaningful to me?
Is it feeling helpful in some way that feels healthy?
Or is it potentially one of those self-protective patterns?
Because I'm not feeling like I can safely
or securely connect to what's going on deeper
and start to consider ways to maybe connect to your emotions
or take a risk to share with somebody and see how it goes.
And I will tell people, and it's what I do,
is I will ask Eric, for example, my husband,
when I'm feeling the need to just feel heard,
I'll set the frame in advance.
I'll say, "There's something kind of weighing on me
that's feels kind of heavy and I want to share it,
and I really just need you to listen and just love me.
Just care for me. I'm not asking for any kind of advice."
So letting people know that upfront helps a lot.
That's a great idea.
And I'll validate when somebody does give advice.
I know they're trying to be helpful
because they care about me.
That action is quite valued for people giving it,
but they just don't understand in the moment
what I really need.
Or they're feeling so uncomfortable with my distress
that they want to ease it,
so their minds are giving them an idea,
and they become very attached to that idea.
Like, "Oh, if they just do this, this and this,
then Ann won't feel this distress.
So I'm going to give her this idea."
So we get attached to our own ideas like,
"Oh, if somebody just does this, they'll feel better."
Because we care and we want that, but look what's happening.
We're getting attached to an idea
and we're putting it at the foot of somebody else
without necessarily checking in:
is that what they're wanting or needing from us?
And it happens so fast and so subtly
that I just encourage people to check in with each other.
What is it you're needing?
Or, hey, I'm really going to try to work
on being just a listener.
And even though my mind may give me ideas to give advice,
I'm going to try to just observe that chatter
and still show up in a real way with the people I love.
And again, when I heard about your approach
with that help desk and the peer to peer,
my core just felt this warmth and respect for you
and having help staff because you're...
It's like you're all psychodynamic therapists.
You know the importance of belongingness
and just being with it is actually healing
and it's doing something so important.
Well, Ann, I want to thank you so much
for just spending this time with me here today.
I know when we put this on the calendar,
I was eagerly anticipating it,
and it was well worth the wait.
Such a wonderful conversation.
I feel like we could keep talking all day too.
But maybe you'd be willing to join us
on another episode down the road here in the future.
Absolutely.
Yeah.
Your personal stories, I just appreciate you being so open
and just sharing those and then your professional insights
I think are so helpful.
So again, just thank you.
Thank you so much for this conversation today.
I really appreciate it.
You're welcome. Thank you.
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