When you're the only person you know with vision loss,
it's easy to feel like you're going through it alone.
In this episode, Hadley's Marc Arneson joins us
as we talk about our sister podcast,
"Insights & Sound Bites," where people share
what has helped them to cope and adjust.
I'm Ricky Enger, and this is "Hadley Presents."
Welcome to the show, Marc.
Thanks, Ricky.
So good to be back.
Yes, it has been a while, and in fact,
you've had a title change since the last time
you were here, and so have I for that matter so-
That's right.
You are now, what's your title?
My title is director of emotional
and social support here at Hadley.
So some of the new things that we're doing to try
and help with some of the emotional challenges
that come with vision loss,
I'm getting involved in some of that.
Yes, awesome.
And I am the director of practical help.
So the reason I bring this up is we will be hearing
a few stories today that kind of
encapsulate both those things.
And I don't know why I find that surprising
because when you're going through an adjustment like this,
or maybe your vision loss has always been at the level
it is now, but you're living in a world
that isn't necessarily designed for you,
there's both of those challenges, right?
The practical help, you know, what do I do?
How do I figure out how to find my way around
or cook or clean?
And then of course there's your side, Marc.
So what are the things that people tend to deal with
from the social emotional side?
You know, some of the things that I often hear from folks
who are reaching out to us is sometimes
they're the only person they know
that is dealing with vision loss
and there can be a lot of isolation with that
and some loneliness.
And you know, as the vision continues to decline, you know,
relationships change, you know,
both dynamics within perhaps a marriage
or parent-child relationships or even friendships.
And so, you know, oftentimes, we're trying to help folks
find a space where they can kind of talk about that
and explore some of that stuff.
And I think one thing that really helps people
is to know you are not alone.
It's not just you who's going through whatever this is.
And while every person's story is different,
there do seem to be just some common threads
I feel like that come up over and over again.
And that's one of the reasons
that we have created the sister podcast
"Insights & Sound Bites" so it's where people call us
or send us recordings through our website
and we'll talk about how to do that at the end of this.
But people who are willing to share their stories.
And I think it's been tremendous just hearing from people.
It's interesting, Ricky, in preparation for this,
and you know, just in thinking ahead about this time today,
I spent some time listening to
some of the different episodes, and you're right,
there are just some common themes that we hear from folks,
but they're just so powerful.
These personal stories, you know, of challenges
that some of our members are facing,
but then, you know, how they've overcome.
But I know that, you know, it is really cool
to hear the ways that folks are managing
some of these difficult situations
and coming out with more hope.
Absolutely.
So in this episode, we're just gonna play a few of these
and we'll comment on them.
You know, we'll keep it short because
it's really about sharing these stories
more than what we have to say about them.
They're all so, so good.
And I think the ones we've chosen
are just some of the top things that we hear from people.
And one of those things is,
"Hey, this was such a surprise to me.
It came out of nowhere."
And then, "How do I deal with that?"
So to represent that, up first we're gonna hear from Emma.
My name is Emma D.
I am 77 years old.
I live in Illinois.
My blindness occurred four years ago.
It took me totally surprised.
I went to the doctor, like, in November,
found out I went blind in March.
I had no kind of preparation.
And that's what bothered me the most.
And I had to get past psychologically
because I didn't have time to prepare myself.
And I am an avid reader, I was a teacher,
and I loved to travel.
I mean, travel was my thing.
Seeing things, writing down things,
sending memos out to people, sending cars out to people.
That was my love, and it kept me going for years.
All of a sudden, I went blind.
I had been around maybe
just a couple of blind people in my life.
I didn't know the struggles that they had.
I didn't know the challenges they had.
But then when it hit me smack in the face,
it was totally different.
It was something that it was hard for me to accept.
I never really said "Why me?" but I did say, "Why?"
And right now, I'm gonna be honest with you,
I wanna see right now.
I miss the sun.
I haven't seen the sun in four years.
I miss my reading.
I couldn't even write my own name.
It's hard enough being blind and you feel sort of insecure
and your self-esteem has sort of plummeted.
Blindness is not only blindness.
Blindness is psychologically, it's physically,
it's mentally, it's spiritually, it's anything you wanna say
because when you are blind, you have to start all over.
The frustrating times that I run into
is when I turn around sometimes and I get lost.
You can get lost in your own home
and then I have to feel something to bring my sight back
and I just sometimes have to just stop and scream.
And then I settle down and I pray and I touch something
and I remember this is where I am.
Emma, this is where you are.
Settle down, this is where you are.
This is something you're going through.
This isn't the end of the road for you.
You're going through it.
So just deal with it with as much grace as you can.
And that's how I make it on a day-to-day basis.
Knowing this, as far as I'm concerned,
and that's how I make it.
I feel like I am alone a lot of times.
Even though there's people sitting next to me,
I don't know whether there's a chair here,
a stool here or whatever.
So this vast darkness is just here.
And you do feel like you're alone,
even though a lot of times you in a room of people,
you feel like you're alone.
Then sometimes you have people.
I have a good peer group and I got people all around me
like all my ladies.
We can laugh together.
We come pray together.
They give me their experiences
and it feels like I am not alone.
People have been my foundation
when I didn't even know they were here for me.
They were here.
And just a telephone call helps you through the day.
Just a kind word helps you through the day.
Just knowing someone thinking about you
helps you through the day.
And that's how I deal with my blindness.
Wow, she really said a lot, right?
So just that no holds barred, "It's bad sometimes."
And yet I do feel like there was that hope, right?
Just listening to Emma, I'm like, gosh, it's so powerful.
I actually was on the phone with her when we recorded this
and I just remember just sitting there
just being amazed at her story.
And she's such a good storyteller
and the way that she just shares her life,
she's so open and vulnerable.
And I remember just sitting at her feet
as she shared her story and it was just so cool to hear.
Absolutely, I love how she takes us through
kind of the darkest parts of it,
but also the joy that she has
and who is helping her and how.
So very powerful.
So next up, we are going to hear from Albert.
He found his own bit of salvation
and something that helps him cope.
My name is Albert Papazoni.
I live in Houston, Texas, and I'm 63 years old.
When I got into my early 50s,
I started noticing my vision decreasing very rapidly.
And what I found is that I had a genetic issue
that skipped a generation.
So today I would say I have maybe 10% vision,
depending on the lighting and stress level, of course.
You wouldn't believe it, but that does have a huge impact.
Can't read hard copy paper any longer.
And probably the biggest one is I have to plan my day
a little more than the average person.
You know, in the past, it was jump in the car,
run to the store, get a quart of milk.
I can't do that as easily.
I went to the Humane Society.
I ended up getting two cats, so they wanna lay in my lap.
The minute I come in the door, they follow me to my chair.
And animals are so smart, but I sit in my chair
and they both wanna pop up there and sit in my lap
and that's very comforting.
So I found a lot of comfort in my cats.
And maybe they know I saved them.
Maybe there's a little bit of that too, I don't know.
But they certainly helped me.
That just makes me smile.
Any stories about animals make me smile.
We recently lost our cat, unfortunately,
but she definitely knew, and he's so right.
Animals are smart.
They can figure out, "Oh, you can't see me,
so maybe I shouldn't be under your feet quite as much."
(Ricky and Marc laugh)
You're so right, Ricky.
I was just smiling listening to Albert that whole time
talking about his comfort cats.
It's just so nice.
Yes, absolutely.
And if you're listening and you're thinking,
"I'm not sure if I can care for my pets.
Are there different things that I need to think about?"
You know, it's important to know there are ways to do that.
In fact, Hadley has a couple of workshops on those things
to keep in mind, like, measuring the medication
and different things that you might need
to know to care for your pets effectively
and it's certainly possible and so very rewarding, right?
Yeah, yeah.
So next up, we are going to hear from Jayne.
My name is Jayne Surrena and I'm from Philadelphia.
I went to school for painting
and got my master's in art education.
I had been painting and showing my art since I was 20
and working nonprofits and teaching.
I have retinal dystrophy.
I didn't realize I had an issue
until I guess the beginning of the pandemic.
I honestly thought everyone saw
the same way I did my entire life.
So I went to a different eye doctor.
They're like, "There's nothing we can do.
That's just normal.
It usually happens when you're older.
We can't do anything about it."
I felt so in the dark about everything
and just very isolated.
I would go online and just try to look up the terms
that they were using 'cause I still feel, I guess,
very vulnerable about it.
With vision loss, so often I spend so much of my day
trying to force myself to see things I can't see,
like trying to focus on something
that's blurry or not there anymore.
And I get anxiety and I stress out about it
and I just shut down 'cause it's never gonna come back.
It's never gonna come into focus.
But the one positive of everything is with my artwork,
the fact that I can't see every imperfection
and mistake in my artwork anymore.
I have so much more freedom.
And instead of spending like hours
trying to make everything meticulous,
I am going through pages and using colors for the first time
and creating images that are just
actually from like inside of me and like from emotion
instead of trying to remember technical skills
that I was taught in school years ago.
Like I'm enjoying myself for the first time.
And like I'm actually smile,
I feel like myself smiling as I work.
And like I step back, I'm like, yes.
And it's there because I'm not focused on any details.
It's just the overall piece that is,
I just feel like it's a part of me now.
It's a part of me now.
That was actually the title of the episode
and I think that sums it up so well.
Just going from, "Wait, what is this?"
to figuring out a way to incorporate that in her life.
Her story actually reminds me of,
we had another artist with vision loss, Chloe Duplessis,
who was on "Hadley Presents."
And she said something very similar
where she's talking about rather than saying,
"I have to give up my art," she finds a new way to do it
and her art is actually better and different.
And I appreciated her, just her honesty.
I think she talked about how she, you know,
is kind of forcing herself to see the things that she can't.
And I was thinking that I'd probably be doing
the same kind of thing.
Right, yeah.
Having the anxiety and to find that outlet in her art.
I think she said she's creating from emotion
instead of technical skills now and smiling as she worked.
That's so cool.
I love it.
So next up we're going to hear from Bruce,
and Bruce is sharing something that,
it's one of the top things that I think about
that people who sort of reach a certain point
face this struggle and everyone overcomes it
in a slightly different way.
But let's hear Bruce's story.
Hello.
My name is Bruce Wyland and I live on Bainbridge Island,
which is an island off of downtown Seattle.
I have retinitis pigmentosa and I've watched my vision
get narrower and narrower from the outside coming in.
And I've adjusted to it along the way,
giving up various things, sports, driving, et cetera.
But it wasn't until I hit my 60s
that my vision deterioration finally reached
the center of my vision.
And my tunnel vision became so narrow that
I was literally tripping over things,
bumping into dogs and children, open doorways.
And as I walked around at my hometown,
I found myself more and more embarrassed,
apologetic to people.
People just didn't understand about my problem
because I was keeping it a secret.
So the one thing I wanna recommend to people is
when you're ready, get cane training
and embrace the use of a cane.
I have to say I hesitated and resisted for a long, long time
until my wife finally convinced me
that I had to use the cane when I walked about
both for safety and for maximizing social interactions.
And when I started using the cane, first of all,
I stopped tripping over things and running into things.
And second of all, it was a way to gently announce to people
that I had a visual problem.
And suddenly people who were confused or angry were helpful.
Rather than feeling embarrassed as I was afraid I might,
I felt like I had suddenly been given a ticket
to travel around without embarrassment,
without mishaps, both safer and happier.
And the final thing I will say is I was a little afraid
of the cane as a negative symbol.
And I was worried that people might ridicule me
or be less than supportive.
And I will tell you, in the two years
I've been using the cane, I have not had
a single negative interaction with another person.
People are kind, they're understanding, they are welcoming,
and it's been a real plus for me.
So that's my suggestion.
When the time is right, embrace the cane.
Thanks for listening, bye-bye.
That's so awesome.
He quickly encapsulated this whole journey.
Does this come up a lot, Marc, in people that you talk with?
Oh yes, absolutely, Ricky.
I mean, you can imagine.
And I love what he says,
"When the time is right, embrace the cane."
'Cause I think, you know, what you shared earlier,
it's a different journey for everybody, right?
Exactly.
And I imagine it's different for everybody
and it's sometimes not an easy decision to come to,
you know, when it's the right time
to explore using the cane.
But I love a ticket to travel around without embarrassment.
What a cool quote.
Yes, that was the best.
And just that moment of going,
"You know, I thought it was gonna be really negative.
And it turns out that people were actually nice about it."
There's another episode, you probably remember it,
Angela, where she talks about- Yeah, Angela Delgado.
her little secret, yep, yeah.
And it reminded me quite a bit of Bruce's story as well.
And I think she had a similar experience.
I think she thought she would get different reactions
from her family and from others
and it was a real positive experience for her too.
Yeah, that's amazing. (laughs)
I just love sharing these different stories
and that's exactly what "Insights & Sound Bites" is,
is just these little clips of people figuring out
what it was that finally helped them to turn a corner.
We have one last clip here,
and I feel like it encapsulates one thing
that we've sort of been saying all along,
and in fact it is the title of the episode.
So we're going to hear from Ashia.
I'm Ashia James, Georgia.
I was diagnosed with a rare neurological disorder
called benign essential blepharospasm.
And it's where I have uncontrollable eye spasms
and I have eye closures, and I don't know
how long they'll close.
Sometimes they close for a few seconds,
a few minutes or hours at a time,
like maybe about 10 hours at a time.
I found out about this, I think it was in September 2022,
I started panicking because I saw that
there was no cure for this.
And I was hoping and praying that this was not true.
I was afraid to go outside.
Even walking around my house would be a challenge
because you think you really know your house
until you lose your vision completely.
You struggle to figure out where you are.
So I came across American Print House
and I reached out to them.
She recommended Hadley.
And really Hadley changed my life
because I got to hear soundbites of people
dealing with issues just like me.
Even though our conditions are different,
we seem to be going through the same thing,
dealing with it, dealing with grief,
the stages of grief and acceptance that,
you know, finding our way out of it.
What gets me through the difficult moments
is knowing that there's a community out there
that is experiencing similar things.
The first feeling for me was feeling
that I'm in it by myself.
You know, there's no one around to help me.
They don't know what I'm going through.
But with Hadley, that community,
we all share similar experiences.
Even though they may not be exactly the same, we're similar.
And that gives me hope, faith, and confidence.
It's said so many times,
and I hate it to be a cliche, but it's true.
Finding out that you're not alone
makes the biggest difference in the world.
As I was listening to this, I'm just so grateful
that she found us here at Hadley
and she's getting connected with others who understand,
you know, her story and her challenges.
Absolutely, because it is so powerful
going through something by yourself,
you think, "This is all on me.
I have to figure it out by myself.
My friends don't understand, my family."
I think she said, "I feel like I'm in it by myself."
Yeah, and then to find a group of people
that are going through the same thing you are.
And that actually brings up the question then.
So if people are listening
and "Insights & Sound Bites" is new to you,
Hadley's peer-to-peer program is new to you,
this is the first time you're hearing
about this sort of stuff, we'll have this information
in our show notes, but Marc,
I'm wondering if you could just give us
a quick rundown for, number one, how does it work?
How do you submit a soundbite
and do you have to get it perfect the first time around?
Like, take us through that.
Yeah, so Ricky, there's lots of ways that
you can share your story with others
through our "Insights & Sound Bites."
One of the easiest ways is to call our 800 number
at 1-800-323-4238,
and the folks at our support center can get your story
and get it out there for folks to listen to.
You can also record directly from our website.
There's a record button right on our site
that you can select and just start recording
and that'll be saved.
And we'll have that available and we can get it that way.
You can also call.
There's an "Insights & Sound Bites" podcast voicemail line,
and that number is 847-512-4867.
So if you call that number, you can just leave a message
on our voicemail and we can get your story that way too.
Awesome, and I know you all make it so friendly.
It's not a nerve-wracking process.
If you have a story and you're not quite sure
how to tell it, Marc and his team are really good
at kind of teasing that out of you
and getting you to open up a bit
and share what you need to in the way that you want
as opposed to when I leave a voicemail,
I'm kind of stuttering and wishing
I could do it all over again.
So if that's a concern, don't worry about that.
And if you're wondering about how to listen
to "Insights & Sound Bites," you can of course
find it on our website, but it's also available
on places like Apple Podcasts, Spotify,
really wherever you're getting "Hadley Presents,"
you're also going to find
"Insights & Sound Bites" there as well.
We do have a phone number if you would like to listen
by phone if that's just a bit easier.
That's 847-558-1317.
So lots of ways to listen.
And honestly, Ricky, it's one of my favorite parts
of my job is, you know, hearing people's stories
and sometimes I'll spend half an hour,
45 minutes on the phone with somebody
and just to be able to talk and, you know,
we'll pull out some of our little clips
from our conversations.
So I really enjoy being able just to sit
and chat with people and hear their stories.
That's great.
And how about for that one-on-one connection?
How do people get involved with the peer-to-peer program?
Yeah, it's a program.
I mean, so encouraging to hear about some of the connections
that folks are making with one another
and the support that they're being able to offer each other.
And if you ever feel like you, you know,
would benefit from connecting with somebody else
who is going through something similar,
we're happy to see if we can figure that out with you.
Again, the easiest thing to do is just call our 800 number.
Again, it's 1-800-323-4238.
The folks at our support center, you know,
they'll want to get to know you a little bit
and so they'll just ask you a few questions,
maybe about your eye condition
and maybe hobbies, interests, things like that.
And then we'll do our best to try and connect you
with somebody who has some similarities
and then we'll introduce you to one another.
Awesome.
Well, thanks, Marc.
It's been a lot of fun just listening
to a few stories together and I always feel
at the end of each one just how powerful it is.
It's sort of like a rollercoaster where it goes down,
oh, it's going back up.
Yes, that's exactly right. (laughs)
No, thanks for inviting me, Ricky.
I do appreciate it.
I so enjoy listening to these as well.
It's just, it reminds me that
there is a lot of hope out there, right?
And there are others who understand
and are willing to be there to help.
Thanks so much, Marc, for stopping by.
And of course, thank you all for listening.
We're just about done, but I couldn't resist.
We put together one last clip of clips, if you will,
and it's just a couple of people expressing
really how they felt when they discovered
"Insights and Sound Bites"
or decided to share their own story.
So if you're still on the fence, I think this last set
of clips is going to really encourage you
to check out the podcast and hopefully share your own story.
One of the things was, I was listening to
"Insights and Sound Bites" where the lady,
she just turned everything around
and that's what I am doing.
I think it's a path.
I believe it's a path we go on
but it's in a different direction depending on
what you're looking for, for everyone with vision loss.
And I have reached out and got help,
but I love the "Insights and Sound Bites"
and I listen to as many of them as I can.
Hadley has really, really helped me
kind of feel like I have a community of some sort
where I just listen to all of everybody's stories
and this is absolutely wonderful.
And I want to thank you all from the bottom of my heart
for even deciding to do this
because this is something that I thoroughly enjoy.
This year, I've given up so much.
Driving the car, sold the car, gave up my business,
my work of 50 years, and everything changed.
If I could help one person with my story,
I've achieved a great deal moving on
to the next phase of my life with low vision.
It just made me happy because I knew
that I could help somebody.
And if I helped one person through Hadley,
I achieved a great deal.
(cheerful music)
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