-: With vision loss, everyone's journey is different,
but there are some common challenges
and there are coping strategies that can help.
In this episode, Hadley's Vice President, Joan Jaeger
joins us as we discuss our new Adjusting
and Coping Together series.
I'm Ricky Enger, and this is Hadley Presents.
Welcome to the show, Joan. Thanks, Ricky.
So love having you here,
and I love what we are talking about today.
I think it's such a worthwhile thing,
and I'm not just tooting Hadley's horn.
So we are talking about our Adjusting
and Coping Together video series.
And the cool thing is that if it's show
and tell, we're gonna do a lot of showing
and a little less telling this time, which is great
because we get to hear directly from that series itself.
But I think before we do that,
let's just get a little context.
Can we talk about what exactly this series is
and why we created it?
-: Right. So the series adjusted
and Coping Together is built on, like,
two major pillars from the Hadley House.
One is our member-generated podcast called Insights
and Soundbites, where members share a little bit about their
vision loss journey and
what has helped them cope and adjust.
So that's one piece.
The other piece is the small groups
that we've been hosting at Hadley for the past couple
of years now in, in a Zoom room that's facilitated by one
of our Center for Support specialists.
It walks them through very common techniques
for helping navigate through any kind of loss in your life,
including, in this case vision loss.
So there's topics that are typically covered,
there's emotions that are typically explored,
and it tends to really help people
who might have been struggling
to get their feet a little bit under them
after having lost some sight to really begin
to feel like they have a grip on things more.
So those two things came together in
what we're calling our Adjusting
and Coping Together video series.
So at each one of the episodes, you'll hear a little bit of,
of a member story.
And then the second part is coping strategies.
So that directly relates to that story
that is has been shared in the early part of the video,
as well as generalizes it to other people's stories.
Some very common things that people facing vision loss tend
to struggle with and some, some very common techniques
that are known to help people work through those things.
-: So it sounds like we learned quite a bit in hosting
these groups where we're talking to a small group of people
and maybe some commonalities emerged.
Some of them we probably knew already
and some of them might have been a bit of a surprise.
I don't know. Exactly.
And so taking what we learned from those groups
and having these member stories, it's kind of the ideal way
to put that together and reach more people, I would think.
-: Exactly, because that, Ricky, was our challenge.
The small groups are fantastic, right?
And, and we still host those, and we will continue to do so,
but at 15 people at a time- Yeah.
... and Hadley already has 200,000 members
and we are on the march to a million.
So we knew we had to find a way to scale that help,
to help many, many more people
who may be feeling a bit stuck
or feeling like they need an extra hand to,
to work through some things.
-: Yeah, because you've, if, if you're going through this,
the last thing you want is,
can you put your emotional struggle on to hold
for a little bit while we get you on the
waiting list? And so-
-: Exactly. Exactly.
-: Yeah. So we went through
and learned quite a bit in these groups,
and I think ultimately we've got seven topics.
Can you just list what those are?
-: Yes. And they do kind of follow, as I was saying,
the progression of sessions that we host in,
in the small groups, and also that are very commonly worked
through when a counselor, therapist,
social worker is helping somebody work
through the emotions of a loss.
And so grief and,
and what that can look like when you're talking about vision
loss, the emotional spirals, things
that can just set you off and come out of left field
and you're like, "Why did I react that way?" Asking
for help, we know many people find that difficult,
and the flip side of
that same coin is feeling like a burden,
because that is one of the key reasons that
what we learned in the groups that people don't like to ask
for help because they feel like a burden by asking.
The impact on relationships so that friends and family
and how that can change when one has lost some vision,
isolation and loneliness.
Many, many of our members will tell us
that their world became much smaller as they lost vision,
as they maybe had to give up the car keys,
and they started to feel very lonely.
So we talk about that very specifically,
very directly, and self-esteem.
For many, once they've lost some vision, they start to think
that their life is over, there's nothing left to them.
And, and we really, we explore that topic,
we ask those questions,
and we work through that very common feeling.
-: And for something like that, it feels difficult,
at least in my mind, to cover all of
that really quickly and concisely.
And yet, I think we have done a pretty nice job
of you're not going to be going through this for,
for a two-hour video.
It's much like Hadley's other videos.
It's as long as it needs to be to cover everything,
but sometimes I think it is better to get a,
a sneak peek rather than talking about how great it is.
You know, nobody really wants
to hear us talk about how great it is.
-: 100% agree with you, Ricky. -: And
-: Before we start playing some clips, which I,
I'm really excited that we're gonna do, is to your point
of any one of those topics that I just listed,
you could go on for days about that.
-: Yes. - And, and so it's a good thing to explore.
So we are introducing these topics.
We are exposing people to some possible ways to approach it,
but we don't, don't pretend to be the be all
and end all to everything, right?
We are part of this.
And one of the key lines in each one
of the videos is you're not in this alone, right?
You don't have to face vision loss alone.
Give us a call if none of this feels right,
and we'll help you work out something
that might be better for you.
-: Exactly, because everyone's story is different,
and we have the privilege of getting that feedback
and people sharing their own stories, which is wonderful.
Exactly. So maybe we should listen to some.
Yeah, I think it's a great idea.
I think we'll start with grief
and loss since that is sort of a beginning part
of many people's journey.
And we're gonna hear from a member,
and then we're going to hear just some
of those coping strategies.
So here's your sneak peek.
-: My name is Anne Renard,
and in 2018, I was diagnosed with
macular degeneration.
In 2021, for a year, I was going
almost every other week because it was changing so much.
Every time you lose some vision,
it's almost like starting all over.
I find the emotional adjusting
and readjusting to be exhausting,
and that was why I signed up for the hazling, peer-to-peer.
When my mom was in the hospital
with congestive heart failure, I called my peer,
I called Linda, and I'm like, "I'm pointless here,
because I can't drive, I can't help." I was expecting her
to say, "Oh, I know that's really hard." But she says,
"Nope, you can't drive.
Let it go. What can you do? " "Okay, you're right.
What can I do? "It helped me change my attitude,
and it opened the door for me to say," I still have choices,
I still have some control.
"So that was a really big difference for me.
-: So, how do you cope and adjust?
First off, it's important to note that grieving a loss,
allowing yourself to fully feel it, doesn't mean
that you are going to be stuck in the doldrums.
An idea to start with is to simply acknowledge to yourself
that you are feeling the loss.
Recognizing that this is a completely different life than
you expected, that it is a loss
for you rather than pretending that nothing has changed,
or that it doesn't matter to you, can serve a purpose.
It affirms what you're going through.
It may even free up some energy,
energy you've spent trying to ignore how you actually feel.
It's okay to say to yourself," This is hard,
and I really wish it wasn't happening to me.
"The very act of acknowledging this reality, for many,
can be a bit of an emotional release.
-: Wow, I love that.
It's really powerful and so relatable, right?
It's, we're all kind of conditioned to just get through it,
ignore it, it'll go away. Right.
-: Stiff upper lip, it'll go away.
-: While -: It's a simple thing, many
of us just don't do that.
So it's just giving you that, that permission to take
that step, recognize it, acknowledge it.
-: Absolutely. And in fact, we've got so many comments,
and one of them was just a quick thing to say.
I appreciated the affirmation that it's okay
to feel that way for a while.
So we're not going to play clips from all seven,
and we do have to keep a little bit
of mystery there in order to draw you in
and have you experience these for yourself,
but we do wanna play some other clips.
And I think one of the most common things we get is
that it's such a struggle to ask for help.
People are feeling very independent
and suddenly it's, it's a little, little shaky.
So, yeah, let's hear from a bit of Ron's story
and then maybe some coping strategies for that.
-: My name is Ron Peterson.
I went to school and studied engineering
and had a successful engineering career
and retired about 10 years ago.
But then about five years ago, I lost my vision to glaucoma.
The bottom dropped out very fast,
and it kind of surprised me.
I wasn't really prepared for it. I guess I was in denial.
It just became harder and harder,
and I was really in a funk there, kind of in a deep hole
for a few months.
Losing your vision can throw you into a bad place
for lots of reasons,
but one of the things I learned was how to ask for help.
I'm one of those guys through the years, I'm driving,
I get lost with my wife, and,
and I'm, I'm gonna find my way.
I'm gonna, we're gonna figure this out.
I'll even ask someone.
But one of the things you learn when you're blind is
you need help, and you have
to swallow your pride a little bit,
and I, I learned to ask for help,
and I learned places to go to for help.
-: Another thing that can help is to think ahead.
Who are the people you can trust for certain tasks?
You may want to talk to them in advance,
let them know you will likely call on
them from time to time.
That way, when the moment comes
and you reach out for their help, it feels more like a plan
and less like an intrusion.
And if it feels a little awkward, don't be afraid
to bring in some humor if that's your style.
Whether it's navigating the stalls of a restroom
or figuring out your makeup, laughter has a way
of easing tense moments.
And here's something else worth remembering.
In general, people like to help. Really?
Think back to a time when someone asked you for help
and how good it felt to be there for them.
-: So relatable. -: Absolutely.
-: Especially the, like, I'm not gonna
stop and ask directions
-: Like- I laugh every time I hear that clip,
because we know so many people like that.
And I appreciate that in the end, there's kind of
that reminder of, "Hey, think about when somebody asked you
for help, and were you all like, ugh,
no, I don't wanna do that.
-: " Exactly. And this is one
resonated a lot with our members.
People who are used to being the one that were doing things
for other people, they were the go- tos for lots
of different things, and that felt even more awkward to them
to ask for, for help.
And hearing Ron's story
and h- getting some,
some strategies under their belt, it really helped.
-: And it's interesting because I think,
and we may even hear that as we continue on
with these clips, while they are divided into these
different segments, you know, you have grief
and asking for help and isolation and such.
They are separate videos or workshops,
but they all sort of overlap, right?
-: Absolutely. There's a ton of overlap
because it's the human experience.
And, you know, the human experience kinda goes
through different pieces of things,
but yes, there's a lot, there's a lot of overlap there.
One other thing that I, I remember reading in,
in a review from this particular video was someone
who had said, you know, "I watched this, this clip twice
and it's changed how I view asking
for help now." Like it's helped her
regain a perspective on asking for help.
-: I thought that was so cool. Yes.
Another really common thing that we hear when we talk
to people is the fact that they can feel
isolated, whether it's because transportation is different
and they can't get out as much,
or they choose to step back a little bit.
So I think it's a really, a common thing
that people deal with.
So to talk about isolation, let's hear a bit
of Angela's story and then some of those coping strategies.
-: My name is Angela. I worked in the family business.
I always knew, you know, working on paperwork, I'm like,
"I can't see this, but I'm not going to say anything,
you know, I'll suffer through." Once I got the diagnosis,
I went to a huge depression that lasted a very long time.
Oh my gosh, my life is over.
The doctor said there's nothing that can be done.
What am I going to do with my life now?
I can't drive anymore, you know,
I can't even leave the house.
I had it in my head that there was no
way I could do anything.
One day I just sat up and I, I can't explain it
and all of a sudden I heard a voice
say, "It's not your time.
You, you have things to do.
" I snapped inside my head.
So I got up and went to the computer.
I typed in two help blind people.
Natalie was the very first thing that came up.
My whole world started opening up.
My whole entire world changed with just one search.
You know, I have met some friends, find a friend
that drive, that helps a lot.
I have signed up for ADA para transport.
I get out, walk, now I walk every day,
and that helps just being in the sun helps.
I've got things to do, I've got things to talk about,
I've got people to talk to and places to go.
-: Feeling like your vision loss has uprooted your life in
ways that your friends
and loved ones couldn't possibly understand.
That too can be a very lonely place.
If this sounds like you, you may want
to try picking just one person in your life to confide in.
Tell them what you're facing, what you can
and can't see anymore, and how you feel about all of this.
Sharing with a friend or family member, counselor,
or therapist could begin to ease that sense of loneliness
for you and could help you begin
to reconnect the pieces of your life.
-: Yeah, it's really good advice.
If you're stuck in that loop of feeling like,
"I don't have anyone to talk to.
Things are going to be this way forever
and no one quite understands." Just choosing
that one person can really help.
-: And taking that extra step, as Angela did, even just
to begin with, her one person was Google, right?
Right. When she, she went and searched for some help,
and that was the first step that led
to many more steps, right?
Where she found out there were some things local to her,
she absolutely found Hadley, got a, got a pair of things,
things got in place for her,
but that first step was the hardest one for her.
-: Yeah, and it's a really good point.
You never know what's gonna happen with that first step.
And one thing I found interesting about this
one in particular is that there are a number of comments.
We get these on all seven in these series,
but there are a number on this one in particular
that are people just realizing they're not alone.
One person's like, "Oh, wow, this is exactly
where I am in my life."
-: Exactly.
Yeah. Even just knowing
that you're not alone gives you a bit more courage for many
to say, "Others are feeling the same way.
There are people out there, even though I didn't know that
before now, and that, that feels
-: Better." And that's why I think it's helpful
to hear directly from people too.
It's not just some random person
narrating something at you, it's a story.
-: Exactly. The, these are real stories and,
and real ways that people found their way through.
And one of the, the, the lines at the end of
that particular episode is, "If none of this feels good
to you or none of this feels right, any
of these coping strategies just feel wrong
for you personally, give us a call at Hadley." Our support
center specialists can help you.
We'll figure what will feel good for you so that it's not,
you know, this video and that's it.
We really can wrap around some extra pieces of support.
And one of the things that's important
to know at Hadley is you'll always talk to a person.
Someone will answer that phone
and will help you figure it out.
We'll figure it out together.
-: So if you are not alone, in other words,
you do have friends and family, you may feel alone,
but your friends and family are in some ways a part
of this adjustment.
And sometimes they're a bit confused, you're a bit confused
as to how to share what's going on.
So that too is really, really a common thing
that people talk about with my friends, with my family
my relationships.
How exactly do I navigate this?
So let's hear then a bit from Eugenia and her story,
and again, some of those ways that you might get through it.
-: Hi, this is Eugenia Daru.
I lost my vision a few years back.
I had a brain tumor and I ended up with surgery
and it damaged my ocular nerves.
I had separated myself from my friends a little bit,
and with my family, I will say I was afraid to tell them
that I was having trouble
because I didn't want to let them down.
I'm the one that pulls it all together.
First it was difficult to ask people
or say, "I just have to figure out the ride." And I had
to accept things.
A family member always says, "Oh, I'm her Uber."
It's funny in the first moment you say it but
after you've said it a thousand times, it's,
makes it on the embarrassing side.
Again, they're helping me, so what can I say?
I don't wanna hurt somebody's feelings, so I am cautious.
Even though I don't believe in their hearts, they're trying
to hurt me by saying it.
I have find myself swallowing it a little bit.
People don't know how to react to illnesses or vision loss.
They just don't. You know, you're trying
to navigate it yourself,
but you're trying to help them navigate it too.
It's a journey for all of us.
-: As Eugenia said, she had to make herself do it,
and what she learned was
that others in her life were struggling
to navigate this new part of their journey too.
It takes time and trial
and error for everyone involved to figure out what works now
and what may not anymore.
-: I have to say, it really is relatable,
especially the Uber part
or the, we're going to make a, a blind joke
or a low vision joke and people think they're very original
and sometimes maybe not so much.
-: And that really resonates with something we,
we touched on a, a few minutes ago,
which is the roles we have.
You know, there's a certain role you end up
with in your family or with your friends,
and if vision loss shifts that role a bit, ev-
if only temporarily,
that can be really challenging for everybody.
For, for you, it might be a reason you,
you pull back from a, a family member or friend,
or for them, they're, like, wondering what should I say,
maybe walking on eggshells,
or the opposite making inappropriate jokes, right?
I think one of the things that Eugenia said, which was
I think a perfect summation of it is they just don't know
what to say, and they're trying too,
and you're all figuring it out together, right?
That's the reality.
-: Yeah. And I think once you understand that,
once you know that it's not just me experiencing this,
everyone is dealing with it in their own way,
that can maybe open up some lines of communication
that weren't there because you, you're thinking, "Well,
I'm just carrying this all on my own,"
or, "They'll never understand me, so why bother?"
-: Precisely, yeah.
That this is super common.
This is, this happens all the time,
and here, here's some, some pointers
or some ways others have found
that works to navigate through.
-: One other thing that Eugenia said that I think ties kind
of nicely into the next clip
that I wanna share is she was the one
who pulled it all together.
So again, we're back to roles, right? That was her identity.
And when something
like this impacts your identity, it's going
to impact your self-esteem as well.
You're kind of wondering, who am I?
So let's hear then from Kara who shares
how vision loss was impacting her self-esteem, hear a bit
of her story, and then some of those ways
to cope and get through it.
-: My name is Kara Snyder.
My background is in the arts,
and I did visual art for fun on the side,
but then once I started losing vision, I realized,
wait a minute, I really wanna be a full-time artist.
I had to go through a period of
uncertainty, you know, down and dark and depressing,
but it was like I was grappling to find my feet again
because the markers I used in my life
to define myself
or define meaning often were based
in a visual interpretation of the world.
And I thought, "Oh my God, that's my livelihood.
It's my life. It's the thing I love the most." So when
that became lost to me,
it really made me redefine what
constitutes meaning in my life, how do I proceed in my life
with this huge change.
One friend in particular,
it was almost like a drill sergeant, like, you don't give up
because just because you think you can't paint doesn't
mean you can't paint anymore.
So when I would sit in my studio,
I could still feel the canvases stacked against the wall,
I could still smell the paint, I could feel my brushes,
I could sense the light coming in the
window, all that stuff.
So I was like, "What am I waiting for?
" So I just started to experiment with painting.
There's part of me that really appreciates
and is grateful for the ability
to use my other senses in a deeper way,
and so that has been a gift in and of itself.
I'm not gonna lie, at times I was re-questioning,
I'm not saying it was a perfect, seamless bounce back into
happiness, it's up and down, up and down.
But because there was such deep meaning in those moments,
it made me realize I redefined my sense
of being in the world.
-: Now, most of us aren't artists,
but changes to vision have a way of also changing
how we think about ourselves.
It could also be that things just take a lot longer
to get done now, where before, we were on top of everything.
Feelings of frustration can grow.
Feelings of incompetence can even sit in.
In short, self-esteem can suffer.
Then there's the fear of how others now see us.
Do they think of us differently now than they did
before our vision changed?
Do they see us as lesser than now? Or weak?
Are we now defined by what we've lost?
Fears like these can circle through the hearts
and minds of many facing vision loss,
but there are things you can do to help work
through these common emotions.
One thing that tends to help is this.
Whenever you can, try to focus on the strengths
and abilities you still have.
And there are many, even if at times,
it doesn't feel that way to you.
Another thing others facing vision loss have found helpful
is to recognize
that everyone will face losses in their lifetime.
Everyone. It's part of being human.
So rather than assuming people in your life find you lesser
than because you've lost some sight, it may help
to recognize that they too are likely facing loss
of some sort, whether you realize it or not.
Lastly, expect
that things won't always progress in a straight line.
As Kara mentioned, for her, it's been an up and down battle.
It wasn't a seamless bounce back,
but she now feels good about her progress.
-: Yeah, there's really a lot to unpack there.
I think the part I appreciate most is sort of get out
of your own head in realizing what you're going through.
It's likely that other people are carrying
some heavy stuff too.
-: Yeah, everyone is.
That, you know, as we travel through a life,
every single one of us is gonna face some
losses, every single one.
And some of them are, are re- real obvious
to others and others aren't.
And some people talk about their losses more frequently,
more easily than others, but everyone's facing it.
The other thing that I liked that Kara touched on,
and that was then reframed in the coping strategies, is
that, you know, there's not a right
or wrong way to adjust to this new chapter in your life.
The fact that it's going up
and down is to be expected, right?
It's not like, "Oh, I, I should have already learned this.
I shouldn't feel this way still after X number of months
or years." You're going to experience this uniquely as you,
and things change.
-: Yeah, and it's important to say that
because people do feel exactly that way.
Shouldn't I be over this by now
or shouldn't I be further along?
And it's not helpful. It goes at the speed it goes, right?
-: It goes at the speed it goes.
And, and the idea that rather than focusing on the things
that are more difficult
or that you, you're still struggling with,
just give yourself some credit
for having figured some things out.
And you do still have strengths, right?
And, and, and it doesn't, it doesn't define you.
It is a part of who you are.
It is not you, this loss of vision.
-: Yeah, it's really good advice.
Anything that you feel like we should have covered
that we didn't?
-: So how you can find this series
for yourself is on our website, so hadleyhelps.org,
on our app, our newly launched app.
And if you haven't heard about the app or w-
or wanna know how to, how to find it, give us a call.
We'll help you..
-: So if you'd like to learn more about our app
you can give us a call about that too.
It's 800-323-4238.
-: Yeah. A- a- as well as if you would like, you know,
some personalized, individualized help about, you know,
whether it's how to find vision rehab services near you, how
to find any kind of help that might be local
to you versus online help versus getting into a support
group or getting a peer, you know, just give us a
-: Call.
And it's important to reiterate, it is all free.
So if you're listening and you haven't created a Hadley
account, give us a call.
If you need some assistance with that, we'll have a link
to the series in our show notes.
You can go right to that.
And what you've heard today is just a sneak preview.
So there's lots more coping strategies
and a bit more of the member stories in
each of those as well.
Plus there are, I think, three
or four that we didn't actually share anything from,
so lots to check out, right?
-: There's lots to check out.
I really do encourage you to, to do that check,
check them out and get, let us
know what you think about them.
We are always learning from the people that we're,
we're hoping to help.
So tell us how it strikes you.
Tell us how we could do better. It's important to us.
-: Well, Joan, I wanna thank you so much for stopping by
and listening to these clips with me.
It's been fun to chat.
And we, you might just get dragged in front
of a microphone again.
-: Oh, no. No, I would love to.
It's really been a, it's a delight.
And I am delighted to be able to represent this new series
because I think we're gonna help a lot of people with it.
-: Well, thanks so much for dropping by
and thank you all for listening.
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