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With vision loss, everyone's
journey is different,
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but there are some common challenges
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and there are coping
strategies that can help.
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In this episode, Hadley's
Vice President, Joan Jaeger
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joins us as we discuss our new Adjusting
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and Coping Together series.
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I'm Ricky Enger, and
this is Hadley Presents.
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Welcome to the show, Joan. Thanks, Ricky.
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So love having you here,
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and I love what we are
talking about today.
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I think it's such a worthwhile thing,
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and I'm not just tooting Hadley's horn.
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So we are talking about our Adjusting
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and Coping Together video series.
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And the cool thing is that if it's show
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and tell, we're gonna do a lot of showing
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and a little less telling
this time, which is great
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because we get to hear directly
from that series itself.
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But I think before we do that,
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let's just get a little context.
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Can we talk about what
exactly this series is
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and why we created it?
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Right. So the series adjusted
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and Coping Together is built on, like,
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two major pillars from the Hadley House.
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One is our member-generated
podcast called Insights
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and Soundbites, where members
share a little bit about their
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vision loss journey and
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what has helped them cope and adjust.
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So that's one piece.
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The other piece is the small groups
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that we've been hosting at
Hadley for the past couple
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of years now in, in a Zoom
room that's facilitated by one
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of our Center for Support specialists.
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It walks them through
very common techniques
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for helping navigate through
any kind of loss in your life,
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including, in this case vision loss.
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So there's topics that
are typically covered,
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there's emotions that
are typically explored,
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and it tends to really help people
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who might have been struggling
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to get their feet a little bit under them
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after having lost some
sight to really begin
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to feel like they have
a grip on things more.
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So those two things came together in
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what we're calling our Adjusting
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and Coping Together video series.
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So at each one of the episodes,
you'll hear a little bit of,
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of a member story.
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And then the second part
is coping strategies.
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So that directly relates to that story
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that is has been shared in
the early part of the video,
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as well as generalizes it
to other people's stories.
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Some very common things that
people facing vision loss tend
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to struggle with and some,
some very common techniques
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that are known to help people
work through those things.
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So it sounds like we
learned quite a bit in hosting
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these groups where we're talking
to a small group of people
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and maybe some commonalities emerged.
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Some of them we probably knew already
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and some of them might have
been a bit of a surprise.
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I don't know. Exactly.
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And so taking what we
learned from those groups
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and having these member stories,
it's kind of the ideal way
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to put that together and reach
more people, I would think.
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Exactly, because that,
Ricky, was our challenge.
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The small groups are fantastic, right?
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And, and we still host those,
and we will continue to do so,
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but at 15 people at a time- Yeah.
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... and Hadley already has 200,000 members
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and we are on the march to a million.
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So we knew we had to find
a way to scale that help,
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to help many, many more people
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who may be feeling a bit stuck
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or feeling like they
need an extra hand to,
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to work through some things.
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Yeah, because you've, if,
if you're going through this,
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the last thing you want is,
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can you put your emotional
struggle on to hold
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for a little bit while we get you on the
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waiting list? And so-
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Exactly. Exactly.
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Yeah. So we went through
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and learned quite a bit in these groups,
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and I think ultimately
we've got seven topics.
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Can you just list what those are?
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Yes. And they do kind of
follow, as I was saying,
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the progression of
sessions that we host in,
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in the small groups, and also
that are very commonly worked
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through when a counselor, therapist,
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social worker is helping somebody work
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through the emotions of a loss.
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And so grief and,
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and what that can look like
when you're talking about vision
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loss, the emotional spirals, things
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that can just set you off
and come out of left field
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and you're like, "Why did
I react that way?" Asking
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for help, we know many
people find that difficult,
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and the flip side of
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that same coin is feeling like a burden,
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because that is one of
the key reasons that
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what we learned in the groups
that people don't like to ask
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for help because they feel
like a burden by asking.
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The impact on relationships
so that friends and family
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and how that can change when
one has lost some vision,
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isolation and loneliness.
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Many, many of our members will tell us
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that their world became much
smaller as they lost vision,
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as they maybe had to give up the car keys,
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and they started to feel very lonely.
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So we talk about that very specifically,
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very directly, and self-esteem.
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For many, once they've lost
some vision, they start to think
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that their life is over,
there's nothing left to them.
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And, and we really, we explore that topic,
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we ask those questions,
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and we work through that
very common feeling.
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And for something like
that, it feels difficult,
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at least in my mind, to cover all of
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that really quickly and concisely.
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And yet, I think we have
done a pretty nice job
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of you're not going to be
going through this for,
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for a two-hour video.
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It's much like Hadley's other videos.
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It's as long as it needs
to be to cover everything,
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but sometimes I think
it is better to get a,
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a sneak peek rather than
talking about how great it is.
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You know, nobody really wants
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to hear us talk about how great it is.
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100% agree with you, Ricky.
And
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Before we start playing
some clips, which I,
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I'm really excited that we're
gonna do, is to your point
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of any one of those
topics that I just listed,
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you could go on for days about that.
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Yes. - And, and so it's
a good thing to explore.
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So we are introducing these topics.
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We are exposing people to some
possible ways to approach it,
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but we don't, don't
pretend to be the be all
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and end all to everything, right?
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We are part of this.
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And one of the key lines in each one
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of the videos is you're
not in this alone, right?
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You don't have to face vision loss alone.
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Give us a call if none
of this feels right,
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and we'll help you work out something
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that might be better for you.
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Exactly, because everyone's
story is different,
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and we have the privilege
of getting that feedback
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and people sharing their own
stories, which is wonderful.
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Exactly. So maybe we
should listen to some.
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Yeah, I think it's a great idea.
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I think we'll start with grief
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and loss since that is
sort of a beginning part
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of many people's journey.
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And we're gonna hear from a member,
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and then we're going to hear just some
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of those coping strategies.
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So here's your sneak peek.
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My name is Anne Renard,
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and in 2018, I was diagnosed with
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macular degeneration.
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In 2021, for a year, I was going
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almost every other week because
it was changing so much.
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Every time you lose some vision,
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it's almost like starting all over.
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I find the emotional adjusting
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and readjusting to be exhausting,
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and that was why I signed up
for the hazling, peer-to-peer.
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When my mom was in the hospital
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with congestive heart
failure, I called my peer,
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I called Linda, and I'm
like, "I'm pointless here,
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because I can't drive, I can't
help." I was expecting her
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to say, "Oh, I know that's
really hard." But she says,
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"Nope, you can't drive.
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Let it go. What can you
do? " "Okay, you're right.
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What can I do? "It helped
me change my attitude,
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and it opened the door for me
to say," I still have choices,
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I still have some control.
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"So that was a really
big difference for me.
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So, how do you cope and adjust?
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First off, it's important to
note that grieving a loss,
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allowing yourself to fully
feel it, doesn't mean
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that you are going to be
stuck in the doldrums.
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An idea to start with is to
simply acknowledge to yourself
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that you are feeling the loss.
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Recognizing that this is a
completely different life than
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you expected, that it is a loss
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for you rather than pretending
that nothing has changed,
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or that it doesn't matter
to you, can serve a purpose.
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It affirms what you're going through.
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It may even free up some energy,
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energy you've spent trying to
ignore how you actually feel.
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It's okay to say to
yourself," This is hard,
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and I really wish it
wasn't happening to me.
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"The very act of acknowledging
this reality, for many,
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can be a bit of an emotional release.
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Wow, I love that.
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It's really powerful
and so relatable, right?
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It's, we're all kind of
conditioned to just get through it,
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ignore it, it'll go away. Right.
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Stiff upper lip, it'll go away.
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While
It's a simple thing, many
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of us just don't do that.
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So it's just giving you
that, that permission to take
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that step, recognize it, acknowledge it.
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Absolutely. And in fact,
we've got so many comments,
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and one of them was just
a quick thing to say.
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I appreciated the
affirmation that it's okay
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to feel that way for a while.
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So we're not going to
play clips from all seven,
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and we do have to keep a little bit
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of mystery there in order to draw you in
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and have you experience
these for yourself,
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but we do wanna play some other clips.
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And I think one of the most
common things we get is
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that it's such a struggle to ask for help.
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People are feeling very independent
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and suddenly it's, it's
a little, little shaky.
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So, yeah, let's hear
from a bit of Ron's story
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and then maybe some coping
strategies for that.
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My name is Ron Peterson.
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I went to school and studied engineering
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and had a successful engineering career
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and retired about 10 years ago.
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But then about five years ago,
I lost my vision to glaucoma.
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The bottom dropped out very fast,
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and it kind of surprised me.
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I wasn't really prepared for
it. I guess I was in denial.
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It just became harder and harder,
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and I was really in a funk
there, kind of in a deep hole
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for a few months.
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Losing your vision can
throw you into a bad place
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for lots of reasons,
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but one of the things I learned
was how to ask for help.
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I'm one of those guys through
the years, I'm driving,
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I get lost with my wife, and,
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and I'm, I'm gonna find my way.
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I'm gonna, we're gonna figure this out.
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I'll even ask someone.
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But one of the things you
learn when you're blind is
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you need help, and you have
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to swallow your pride a little bit,
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and I, I learned to ask for help,
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and I learned places to go to for help.
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Another thing that can
help is to think ahead.
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Who are the people you can
trust for certain tasks?
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You may want to talk to them in advance,
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let them know you will likely call on
249
00:12:05.604 --> 00:12:06.437
them from time to time.
250
00:12:07.880 --> 00:12:09.560
That way, when the moment comes
251
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and you reach out for their
help, it feels more like a plan
252
00:12:12.720 --> 00:12:14.040
and less like an intrusion.
253
00:12:15.040 --> 00:12:17.520
And if it feels a little
awkward, don't be afraid
254
00:12:17.520 --> 00:12:20.040
to bring in some humor
if that's your style.
255
00:12:20.040 --> 00:12:22.440
Whether it's navigating
the stalls of a restroom
256
00:12:22.440 --> 00:12:25.240
or figuring out your
makeup, laughter has a way
257
00:12:25.240 --> 00:12:26.360
of easing tense moments.
258
00:12:27.480 --> 00:12:30.000
And here's something
else worth remembering.
259
00:12:30.000 --> 00:12:33.240
In general, people like to help. Really?
260
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Think back to a time when
someone asked you for help
261
00:12:36.920 --> 00:12:38.800
and how good it felt to be there for them.
262
00:12:40.200 --> 00:12:42.924
So relatable.
Absolutely.
263
00:12:42.924 --> 00:12:44.784
Especially the, like, I'm not gonna
264
00:12:44.784 --> 00:12:45.864
stop and ask directions
265
00:12:45.864 --> 00:12:49.624
Like- I laugh every
time I hear that clip,
266
00:12:49.624 --> 00:12:52.544
because we know so many people like that.
267
00:12:52.544 --> 00:12:55.804
And I appreciate that in
the end, there's kind of
268
00:12:55.804 --> 00:12:59.544
that reminder of, "Hey, think
about when somebody asked you
269
00:12:59.544 --> 00:13:01.884
for help, and were you all like, ugh,
270
00:13:01.884 --> 00:13:03.320
no, I don't wanna do that.
271
00:13:03.320 --> 00:13:06.524
" Exactly. And this is one
272
00:13:06.524 --> 00:13:09.244
resonated a lot with our members.
273
00:13:09.244 --> 00:13:11.864
People who are used to being
the one that were doing things
274
00:13:11.864 --> 00:13:14.084
for other people, they
were the go- tos for lots
275
00:13:14.084 --> 00:13:17.704
of different things, and that
felt even more awkward to them
276
00:13:17.704 --> 00:13:19.244
to ask for, for help.
277
00:13:19.244 --> 00:13:21.304
And hearing Ron's story
278
00:13:21.304 --> 00:13:22.664
and h- getting some,
279
00:13:22.664 --> 00:13:26.224
some strategies under their
belt, it really helped.
280
00:13:26.224 --> 00:13:28.544
And it's interesting because I think,
281
00:13:28.544 --> 00:13:31.284
and we may even hear
that as we continue on
282
00:13:31.284 --> 00:13:35.064
with these clips, while
they are divided into these
283
00:13:35.064 --> 00:13:37.184
different segments, you
know, you have grief
284
00:13:37.184 --> 00:13:40.704
and asking for help
and isolation and such.
285
00:13:40.704 --> 00:13:44.184
They are separate videos or workshops,
286
00:13:44.184 --> 00:13:46.844
but they all sort of overlap, right?
287
00:13:46.844 --> 00:13:49.004
Absolutely. There's a ton of overlap
288
00:13:49.004 --> 00:13:50.644
because it's the human experience.
289
00:13:50.644 --> 00:13:52.824
And, you know, the human
experience kinda goes
290
00:13:52.824 --> 00:13:54.864
through different pieces of things,
291
00:13:54.864 --> 00:13:57.664
but yes, there's a lot,
there's a lot of overlap there.
292
00:13:57.664 --> 00:14:00.944
One other thing that I,
I remember reading in,
293
00:14:00.944 --> 00:14:04.124
in a review from this
particular video was someone
294
00:14:04.124 --> 00:14:06.944
who had said, you know, "I
watched this, this clip twice
295
00:14:06.944 --> 00:14:10.464
and it's changed how I view asking
296
00:14:10.464 --> 00:14:13.024
for help now." Like it's helped her
297
00:14:13.024 --> 00:14:15.824
regain a perspective on asking for help.
298
00:14:15.824 --> 00:14:18.424
I thought that was so cool. Yes.
299
00:14:18.424 --> 00:14:21.704
Another really common thing
that we hear when we talk
300
00:14:21.704 --> 00:14:26.244
to people is the fact that they can feel
301
00:14:26.244 --> 00:14:29.844
isolated, whether it's because
transportation is different
302
00:14:29.844 --> 00:14:31.484
and they can't get out as much,
303
00:14:31.484 --> 00:14:35.184
or they choose to step back a little bit.
304
00:14:35.184 --> 00:14:37.864
So I think it's a really, a common thing
305
00:14:37.864 --> 00:14:39.524
that people deal with.
306
00:14:39.524 --> 00:14:42.144
So to talk about
isolation, let's hear a bit
307
00:14:42.144 --> 00:14:45.244
of Angela's story and then some
of those coping strategies.
308
00:14:46.404 --> 00:14:51.364
My name is Angela. I worked
in the family business.
309
00:14:51.364 --> 00:14:53.964
I always knew, you know,
working on paperwork, I'm like,
310
00:14:53.964 --> 00:14:56.505
"I can't see this, but I'm
not going to say anything,
311
00:14:56.505 --> 00:15:00.505
you know, I'll suffer through."
Once I got the diagnosis,
312
00:15:00.505 --> 00:15:04.985
I went to a huge depression
that lasted a very long time.
313
00:15:06.725 --> 00:15:08.285
Oh my gosh, my life is over.
314
00:15:08.285 --> 00:15:10.765
The doctor said there's
nothing that can be done.
315
00:15:10.765 --> 00:15:13.065
What am I going to do with my life now?
316
00:15:13.065 --> 00:15:15.505
I can't drive anymore, you know,
317
00:15:15.505 --> 00:15:16.845
I can't even leave the house.
318
00:15:18.065 --> 00:15:19.565
I had it in my head that there was no
319
00:15:19.565 --> 00:15:20.705
way I could do anything.
320
00:15:21.945 --> 00:15:25.520
One day I just sat up
and I, I can't explain it
321
00:15:25.520 --> 00:15:27.865
and all of a sudden I heard a voice
322
00:15:27.865 --> 00:15:28.985
say, "It's not your time.
323
00:15:30.280 --> 00:15:31.760
You, you have things to do.
324
00:15:33.320 --> 00:15:35.360
" I snapped inside my head.
325
00:15:36.360 --> 00:15:39.080
So I got up and went to the computer.
326
00:15:40.160 --> 00:15:43.440
I typed in two help blind people.
327
00:15:44.680 --> 00:15:47.200
Natalie was the very
first thing that came up.
328
00:15:48.760 --> 00:15:50.640
My whole world started opening up.
329
00:15:50.640 --> 00:15:54.760
My whole entire world
changed with just one search.
330
00:15:55.840 --> 00:15:59.040
You know, I have met some
friends, find a friend
331
00:15:59.040 --> 00:16:00.600
that drive, that helps a lot.
332
00:16:01.600 --> 00:16:05.400
I have signed up for ADA para transport.
333
00:16:05.400 --> 00:16:08.000
I get out, walk, now I walk every day,
334
00:16:08.840 --> 00:16:11.360
and that helps just
being in the sun helps.
335
00:16:12.360 --> 00:16:14.760
I've got things to do, I've
got things to talk about,
336
00:16:14.760 --> 00:16:17.040
I've got people to talk
to and places to go.
337
00:16:18.600 --> 00:16:21.560
Feeling like your vision
loss has uprooted your life in
338
00:16:21.560 --> 00:16:22.640
ways that your friends
339
00:16:22.640 --> 00:16:24.880
and loved ones couldn't
possibly understand.
340
00:16:25.760 --> 00:16:28.400
That too can be a very lonely place.
341
00:16:29.520 --> 00:16:31.840
If this sounds like you, you may want
342
00:16:31.840 --> 00:16:35.680
to try picking just one person
in your life to confide in.
343
00:16:35.680 --> 00:16:38.040
Tell them what you're facing, what you can
344
00:16:38.040 --> 00:16:41.480
and can't see anymore, and how
you feel about all of this.
345
00:16:43.120 --> 00:16:45.840
Sharing with a friend or
family member, counselor,
346
00:16:45.840 --> 00:16:49.840
or therapist could begin to
ease that sense of loneliness
347
00:16:49.840 --> 00:16:51.920
for you and could help you begin
348
00:16:51.920 --> 00:16:53.960
to reconnect the pieces of your life.
349
00:16:55.640 --> 00:16:57.600
Yeah, it's really good advice.
350
00:16:57.600 --> 00:17:00.640
If you're stuck in that
loop of feeling like,
351
00:17:00.640 --> 00:17:03.000
"I don't have anyone to talk to.
352
00:17:03.000 --> 00:17:05.400
Things are going to be this way forever
353
00:17:05.400 --> 00:17:08.120
and no one quite
understands." Just choosing
354
00:17:08.120 --> 00:17:10.760
that one person can really help.
355
00:17:10.760 --> 00:17:15.400
And taking that extra step,
as Angela did, even just
356
00:17:15.400 --> 00:17:17.960
to begin with, her one
person was Google, right?
357
00:17:17.960 --> 00:17:21.040
Right. When she, she went
and searched for some help,
358
00:17:21.040 --> 00:17:22.960
and that was the first step that led
359
00:17:22.960 --> 00:17:25.145
to many more steps, right?
360
00:17:25.145 --> 00:17:28.405
Where she found out there
were some things local to her,
361
00:17:28.405 --> 00:17:31.965
she absolutely found Hadley,
got a, got a pair of things,
362
00:17:31.965 --> 00:17:34.265
things got in place for her,
363
00:17:34.265 --> 00:17:37.705
but that first step was
the hardest one for her.
364
00:17:37.705 --> 00:17:39.145
Yeah, and it's a really good point.
365
00:17:39.145 --> 00:17:42.886
You never know what's gonna
happen with that first step.
366
00:17:42.886 --> 00:17:45.065
And one thing I found
interesting about this
367
00:17:45.925 --> 00:17:50.925
one in particular is that
there are a number of comments.
368
00:17:51.466 --> 00:17:54.506
We get these on all seven in these series,
369
00:17:54.506 --> 00:17:57.025
but there are a number
on this one in particular
370
00:17:57.025 --> 00:18:01.266
that are people just
realizing they're not alone.
371
00:18:01.266 --> 00:18:03.826
One person's like, "Oh,
wow, this is exactly
372
00:18:03.826 --> 00:18:06.046
where I am in my life."
373
00:18:06.046 --> 00:18:07.246
Exactly.
374
00:18:07.246 --> 00:18:09.946
Yeah. Even just knowing
375
00:18:09.946 --> 00:18:13.486
that you're not alone gives
you a bit more courage for many
376
00:18:13.486 --> 00:18:16.326
to say, "Others are feeling the same way.
377
00:18:16.326 --> 00:18:19.386
There are people out there,
even though I didn't know that
378
00:18:19.386 --> 00:18:21.166
before now, and that, that feels
379
00:18:21.166 --> 00:18:23.366
Better." And that's
why I think it's helpful
380
00:18:23.366 --> 00:18:25.966
to hear directly from people too.
381
00:18:25.966 --> 00:18:28.326
It's not just some random person
382
00:18:28.326 --> 00:18:31.246
narrating something at you, it's a story.
383
00:18:31.246 --> 00:18:34.006
Exactly. The, these
are real stories and,
384
00:18:34.006 --> 00:18:37.066
and real ways that people
found their way through.
385
00:18:37.066 --> 00:18:38.986
And one of the, the,
the lines at the end of
386
00:18:38.986 --> 00:18:42.586
that particular episode is,
"If none of this feels good
387
00:18:42.586 --> 00:18:44.826
to you or none of this feels right, any
388
00:18:44.826 --> 00:18:47.206
of these coping strategies just feel wrong
389
00:18:47.206 --> 00:18:50.346
for you personally, give us a
call at Hadley." Our support
390
00:18:50.346 --> 00:18:52.446
center specialists can help you.
391
00:18:52.446 --> 00:18:56.026
We'll figure what will feel
good for you so that it's not,
392
00:18:56.026 --> 00:18:57.766
you know, this video and that's it.
393
00:18:57.766 --> 00:19:01.806
We really can wrap around
some extra pieces of support.
394
00:19:01.806 --> 00:19:03.506
And one of the things that's important
395
00:19:03.506 --> 00:19:06.806
to know at Hadley is you'll
always talk to a person.
396
00:19:06.806 --> 00:19:08.866
Someone will answer that phone
397
00:19:08.866 --> 00:19:10.546
and will help you figure it out.
398
00:19:10.546 --> 00:19:11.566
We'll figure it out together.
399
00:19:12.566 --> 00:19:16.066
So if you are not alone, in other words,
400
00:19:16.066 --> 00:19:19.446
you do have friends and
family, you may feel alone,
401
00:19:19.446 --> 00:19:24.266
but your friends and family
are in some ways a part
402
00:19:24.266 --> 00:19:25.566
of this adjustment.
403
00:19:25.566 --> 00:19:29.646
And sometimes they're a bit
confused, you're a bit confused
404
00:19:29.646 --> 00:19:32.986
as to how to share what's going on.
405
00:19:32.986 --> 00:19:36.166
So that too is really,
really a common thing
406
00:19:36.166 --> 00:19:39.866
that people talk about with
my friends, with my family
407
00:19:40.846 --> 00:19:42.486
my relationships.
408
00:19:42.486 --> 00:19:45.646
How exactly do I navigate this?
409
00:19:45.646 --> 00:19:50.426
So let's hear then a bit
from Eugenia and her story,
410
00:19:50.426 --> 00:19:53.446
and again, some of those ways
that you might get through it.
411
00:19:54.786 --> 00:19:56.446
Hi, this is Eugenia Daru.
412
00:19:57.706 --> 00:20:00.826
I lost my vision a few years back.
413
00:20:00.826 --> 00:20:05.346
I had a brain tumor and
I ended up with surgery
414
00:20:05.346 --> 00:20:08.586
and it damaged my ocular nerves.
415
00:20:09.946 --> 00:20:12.486
I had separated myself from
my friends a little bit,
416
00:20:12.486 --> 00:20:16.186
and with my family, I will
say I was afraid to tell them
417
00:20:16.186 --> 00:20:17.626
that I was having trouble
418
00:20:17.626 --> 00:20:19.786
because I didn't want to let them down.
419
00:20:19.786 --> 00:20:21.306
I'm the one that pulls it all together.
420
00:20:22.166 --> 00:20:25.446
First it was difficult to ask people
421
00:20:25.446 --> 00:20:29.926
or say, "I just have to figure
out the ride." And I had
422
00:20:29.926 --> 00:20:31.726
to accept things.
423
00:20:33.246 --> 00:20:37.066
A family member always
says, "Oh, I'm her Uber."
424
00:20:37.066 --> 00:20:39.646
It's funny in the first
moment you say it but
425
00:20:39.646 --> 00:20:41.686
after you've said it a
thousand times, it's,
426
00:20:41.686 --> 00:20:43.106
makes it on the embarrassing side.
427
00:20:43.106 --> 00:20:45.286
Again, they're helping
me, so what can I say?
428
00:20:46.547 --> 00:20:49.866
I don't wanna hurt somebody's
feelings, so I am cautious.
429
00:20:50.927 --> 00:20:53.347
Even though I don't believe in
their hearts, they're trying
430
00:20:53.347 --> 00:20:54.827
to hurt me by saying it.
431
00:20:54.827 --> 00:20:58.587
I have find myself
swallowing it a little bit.
432
00:20:59.487 --> 00:21:04.267
People don't know how to react
to illnesses or vision loss.
433
00:21:05.427 --> 00:21:07.107
They just don't. You know, you're trying
434
00:21:07.107 --> 00:21:08.227
to navigate it yourself,
435
00:21:08.227 --> 00:21:09.787
but you're trying to help
them navigate it too.
436
00:21:11.047 --> 00:21:12.347
It's a journey for all of us.
437
00:21:13.867 --> 00:21:17.907
As Eugenia said, she
had to make herself do it,
438
00:21:17.907 --> 00:21:19.207
and what she learned was
439
00:21:19.207 --> 00:21:21.187
that others in her life were struggling
440
00:21:21.187 --> 00:21:23.847
to navigate this new part
of their journey too.
441
00:21:24.687 --> 00:21:26.507
It takes time and trial
442
00:21:26.507 --> 00:21:31.007
and error for everyone involved
to figure out what works now
443
00:21:31.007 --> 00:21:32.427
and what may not anymore.
444
00:21:33.887 --> 00:21:35.707
I have to say, it really is relatable,
445
00:21:35.707 --> 00:21:37.187
especially the Uber part
446
00:21:37.187 --> 00:21:40.647
or the, we're going to
make a, a blind joke
447
00:21:40.647 --> 00:21:44.587
or a low vision joke and people
think they're very original
448
00:21:44.587 --> 00:21:46.867
and sometimes maybe not so much.
449
00:21:46.867 --> 00:21:49.167
And that really resonates
with something we,
450
00:21:49.167 --> 00:21:51.267
we touched on a, a few minutes ago,
451
00:21:51.267 --> 00:21:53.927
which is the roles we have.
452
00:21:53.927 --> 00:21:55.907
You know, there's a
certain role you end up
453
00:21:55.907 --> 00:21:59.047
with in your family or with your friends,
454
00:21:59.047 --> 00:22:02.667
and if vision loss shifts
that role a bit, ev-
455
00:22:02.667 --> 00:22:04.247
if only temporarily,
456
00:22:04.247 --> 00:22:06.427
that can be really
challenging for everybody.
457
00:22:06.427 --> 00:22:08.727
For, for you, it might be a reason you,
458
00:22:08.727 --> 00:22:11.807
you pull back from a, a
family member or friend,
459
00:22:11.807 --> 00:22:14.887
or for them, they're, like,
wondering what should I say,
460
00:22:14.887 --> 00:22:16.787
maybe walking on eggshells,
461
00:22:16.787 --> 00:22:20.147
or the opposite making
inappropriate jokes, right?
462
00:22:20.147 --> 00:22:23.647
I think one of the things
that Eugenia said, which was
463
00:22:23.647 --> 00:22:27.387
I think a perfect summation
of it is they just don't know
464
00:22:27.387 --> 00:22:30.147
what to say, and they're trying too,
465
00:22:30.147 --> 00:22:32.647
and you're all figuring
it out together, right?
466
00:22:32.647 --> 00:22:34.407
That's the reality.
467
00:22:34.407 --> 00:22:38.507
Yeah. And I think once
you understand that,
468
00:22:39.447 --> 00:22:43.407
once you know that it's not
just me experiencing this,
469
00:22:43.407 --> 00:22:46.787
everyone is dealing with
it in their own way,
470
00:22:46.787 --> 00:22:50.367
that can maybe open up
some lines of communication
471
00:22:50.367 --> 00:22:53.147
that weren't there because
you, you're thinking, "Well,
472
00:22:53.147 --> 00:22:55.627
I'm just carrying this all on my own,"
473
00:22:55.627 --> 00:22:59.367
or, "They'll never understand
me, so why bother?"
474
00:22:59.367 --> 00:23:00.887
Precisely, yeah.
475
00:23:00.887 --> 00:23:02.347
That this is super common.
476
00:23:02.347 --> 00:23:04.707
This is, this happens all the time,
477
00:23:04.707 --> 00:23:06.787
and here, here's some, some pointers
478
00:23:06.787 --> 00:23:08.367
or some ways others have found
479
00:23:08.367 --> 00:23:10.787
that works to navigate through.
480
00:23:10.787 --> 00:23:14.007
One other thing that Eugenia
said that I think ties kind
481
00:23:14.007 --> 00:23:17.147
of nicely into the next clip
482
00:23:17.147 --> 00:23:21.067
that I wanna share is she was the one
483
00:23:21.067 --> 00:23:22.487
who pulled it all together.
484
00:23:22.487 --> 00:23:26.487
So again, we're back to roles,
right? That was her identity.
485
00:23:27.327 --> 00:23:29.927
And when something
486
00:23:29.927 --> 00:23:33.307
like this impacts your
identity, it's going
487
00:23:33.307 --> 00:23:35.267
to impact your self-esteem as well.
488
00:23:35.267 --> 00:23:37.227
You're kind of wondering, who am I?
489
00:23:37.227 --> 00:23:41.927
So let's hear then from Kara who shares
490
00:23:41.927 --> 00:23:46.707
how vision loss was impacting
her self-esteem, hear a bit
491
00:23:46.707 --> 00:23:49.168
of her story, and then some of those ways
492
00:23:49.168 --> 00:23:50.267
to cope and get through it.
493
00:23:51.988 --> 00:23:54.368
My name is Kara Snyder.
494
00:23:54.368 --> 00:23:56.228
My background is in the arts,
495
00:23:56.228 --> 00:24:01.228
and I did visual art for fun on the side,
496
00:24:01.368 --> 00:24:04.488
but then once I started
losing vision, I realized,
497
00:24:04.488 --> 00:24:08.248
wait a minute, I really
wanna be a full-time artist.
498
00:24:09.328 --> 00:24:13.668
I had to go through a period of
499
00:24:13.668 --> 00:24:18.388
uncertainty, you know, down
and dark and depressing,
500
00:24:18.388 --> 00:24:23.388
but it was like I was
grappling to find my feet again
501
00:24:23.888 --> 00:24:28.348
because the markers I used in my life
502
00:24:28.348 --> 00:24:29.908
to define myself
503
00:24:29.908 --> 00:24:34.428
or define meaning often were based
504
00:24:34.428 --> 00:24:37.128
in a visual interpretation of the world.
505
00:24:38.148 --> 00:24:41.268
And I thought, "Oh my
God, that's my livelihood.
506
00:24:41.268 --> 00:24:44.708
It's my life. It's the thing
I love the most." So when
507
00:24:44.708 --> 00:24:47.108
that became lost to me,
508
00:24:48.128 --> 00:24:51.488
it really made me redefine what
509
00:24:51.488 --> 00:24:55.708
constitutes meaning in my life,
how do I proceed in my life
510
00:24:55.708 --> 00:24:57.128
with this huge change.
511
00:24:58.208 --> 00:25:00.468
One friend in particular,
512
00:25:00.468 --> 00:25:03.668
it was almost like a drill
sergeant, like, you don't give up
513
00:25:03.668 --> 00:25:06.308
because just because you
think you can't paint doesn't
514
00:25:06.308 --> 00:25:07.968
mean you can't paint anymore.
515
00:25:07.968 --> 00:25:09.768
So when I would sit in my studio,
516
00:25:10.948 --> 00:25:14.688
I could still feel the canvases
stacked against the wall,
517
00:25:14.688 --> 00:25:18.428
I could still smell the paint,
I could feel my brushes,
518
00:25:19.288 --> 00:25:20.888
I could sense the light coming in the
519
00:25:20.888 --> 00:25:22.328
window, all that stuff.
520
00:25:23.668 --> 00:25:26.160
So I was like, "What am I waiting for?
521
00:25:26.160 --> 00:25:30.728
" So I just started to
experiment with painting.
522
00:25:30.728 --> 00:25:33.908
There's part of me that really appreciates
523
00:25:33.908 --> 00:25:35.628
and is grateful for the ability
524
00:25:35.628 --> 00:25:38.248
to use my other senses in a deeper way,
525
00:25:38.248 --> 00:25:40.468
and so that has been a
gift in and of itself.
526
00:25:41.448 --> 00:25:44.748
I'm not gonna lie, at
times I was re-questioning,
527
00:25:45.868 --> 00:25:49.748
I'm not saying it was a perfect,
seamless bounce back into
528
00:25:49.748 --> 00:25:53.288
happiness, it's up and down, up and down.
529
00:25:53.288 --> 00:25:57.988
But because there was such
deep meaning in those moments,
530
00:25:58.868 --> 00:26:02.928
it made me realize I redefined my sense
531
00:26:02.928 --> 00:26:04.488
of being in the world.
532
00:26:06.428 --> 00:26:09.028
Now, most of us aren't artists,
533
00:26:09.028 --> 00:26:12.168
but changes to vision have
a way of also changing
534
00:26:12.168 --> 00:26:14.548
how we think about ourselves.
535
00:26:14.548 --> 00:26:17.868
It could also be that things
just take a lot longer
536
00:26:17.868 --> 00:26:21.788
to get done now, where before,
we were on top of everything.
537
00:26:22.668 --> 00:26:25.088
Feelings of frustration can grow.
538
00:26:25.968 --> 00:26:28.228
Feelings of incompetence can even sit in.
539
00:26:29.388 --> 00:26:32.328
In short, self-esteem can suffer.
540
00:26:33.768 --> 00:26:36.428
Then there's the fear of
how others now see us.
541
00:26:37.588 --> 00:26:39.968
Do they think of us
differently now than they did
542
00:26:39.968 --> 00:26:42.128
before our vision changed?
543
00:26:42.128 --> 00:26:45.888
Do they see us as lesser
than now? Or weak?
544
00:26:46.929 --> 00:26:49.429
Are we now defined by what we've lost?
545
00:26:50.568 --> 00:26:53.149
Fears like these can
circle through the hearts
546
00:26:53.149 --> 00:26:55.509
and minds of many facing vision loss,
547
00:26:56.569 --> 00:26:58.909
but there are things
you can do to help work
548
00:26:58.909 --> 00:27:00.469
through these common emotions.
549
00:27:01.689 --> 00:27:04.649
One thing that tends to help is this.
550
00:27:04.649 --> 00:27:07.869
Whenever you can, try to
focus on the strengths
551
00:27:07.869 --> 00:27:10.169
and abilities you still have.
552
00:27:11.109 --> 00:27:13.489
And there are many, even if at times,
553
00:27:13.489 --> 00:27:15.229
it doesn't feel that way to you.
554
00:27:16.749 --> 00:27:19.849
Another thing others facing
vision loss have found helpful
555
00:27:19.849 --> 00:27:20.889
is to recognize
556
00:27:20.889 --> 00:27:23.669
that everyone will face
losses in their lifetime.
557
00:27:24.629 --> 00:27:27.489
Everyone. It's part of being human.
558
00:27:28.469 --> 00:27:31.769
So rather than assuming people
in your life find you lesser
559
00:27:31.769 --> 00:27:35.069
than because you've lost
some sight, it may help
560
00:27:35.069 --> 00:27:38.389
to recognize that they
too are likely facing loss
561
00:27:38.389 --> 00:27:41.229
of some sort, whether
you realize it or not.
562
00:27:42.289 --> 00:27:43.749
Lastly, expect
563
00:27:43.749 --> 00:27:47.549
that things won't always
progress in a straight line.
564
00:27:47.549 --> 00:27:51.809
As Kara mentioned, for her,
it's been an up and down battle.
565
00:27:51.809 --> 00:27:54.369
It wasn't a seamless bounce back,
566
00:27:54.369 --> 00:27:56.529
but she now feels good about her progress.
567
00:27:58.029 --> 00:28:00.729
Yeah, there's really
a lot to unpack there.
568
00:28:00.729 --> 00:28:04.009
I think the part I appreciate
most is sort of get out
569
00:28:04.009 --> 00:28:07.789
of your own head in realizing
what you're going through.
570
00:28:07.789 --> 00:28:09.969
It's likely that other people are carrying
571
00:28:09.969 --> 00:28:11.829
some heavy stuff too.
572
00:28:11.829 --> 00:28:13.869
Yeah, everyone is.
573
00:28:13.869 --> 00:28:17.109
That, you know, as we
travel through a life,
574
00:28:17.109 --> 00:28:19.269
every single one of us is gonna face some
575
00:28:19.269 --> 00:28:21.109
losses, every single one.
576
00:28:21.109 --> 00:28:23.409
And some of them are, are re- real obvious
577
00:28:23.409 --> 00:28:25.849
to others and others aren't.
578
00:28:25.849 --> 00:28:29.069
And some people talk about
their losses more frequently,
579
00:28:29.069 --> 00:28:32.609
more easily than others,
but everyone's facing it.
580
00:28:32.609 --> 00:28:36.469
The other thing that I
liked that Kara touched on,
581
00:28:36.469 --> 00:28:40.489
and that was then reframed
in the coping strategies, is
582
00:28:40.489 --> 00:28:42.209
that, you know, there's not a right
583
00:28:42.209 --> 00:28:46.209
or wrong way to adjust to
this new chapter in your life.
584
00:28:46.209 --> 00:28:47.409
The fact that it's going up
585
00:28:47.409 --> 00:28:50.049
and down is to be expected, right?
586
00:28:50.049 --> 00:28:52.849
It's not like, "Oh, I, I should
have already learned this.
587
00:28:52.849 --> 00:28:55.489
I shouldn't feel this way
still after X number of months
588
00:28:55.489 --> 00:28:59.609
or years." You're going to
experience this uniquely as you,
589
00:28:59.609 --> 00:29:01.169
and things change.
590
00:29:01.169 --> 00:29:02.729
Yeah, and it's important to say that
591
00:29:02.729 --> 00:29:05.769
because people do feel exactly that way.
592
00:29:05.769 --> 00:29:08.729
Shouldn't I be over this by now
593
00:29:08.729 --> 00:29:11.189
or shouldn't I be further along?
594
00:29:11.189 --> 00:29:14.949
And it's not helpful. It goes
at the speed it goes, right?
595
00:29:14.949 --> 00:29:16.789
It goes at the speed it goes.
596
00:29:16.789 --> 00:29:20.109
And, and the idea that rather
than focusing on the things
597
00:29:20.109 --> 00:29:21.229
that are more difficult
598
00:29:21.229 --> 00:29:23.389
or that you, you're still struggling with,
599
00:29:23.389 --> 00:29:24.729
just give yourself some credit
600
00:29:24.729 --> 00:29:26.669
for having figured some things out.
601
00:29:26.669 --> 00:29:28.849
And you do still have strengths, right?
602
00:29:29.929 --> 00:29:32.989
And, and, and it doesn't,
it doesn't define you.
603
00:29:32.989 --> 00:29:34.569
It is a part of who you are.
604
00:29:34.569 --> 00:29:36.969
It is not you, this loss of vision.
605
00:29:37.869 --> 00:29:40.029
Yeah, it's really good advice.
606
00:29:40.029 --> 00:29:43.050
Anything that you feel
like we should have covered
607
00:29:43.050 --> 00:29:44.890
that we didn't?
608
00:29:44.890 --> 00:29:47.829
So how you can find this series
609
00:29:47.829 --> 00:29:50.909
for yourself is on our
website, so hadleyhelps.org,
610
00:29:51.770 --> 00:29:54.130
on our app, our newly launched app.
611
00:29:54.130 --> 00:29:56.150
And if you haven't heard
about the app or w-
612
00:29:56.150 --> 00:29:59.130
or wanna know how to, how
to find it, give us a call.
613
00:29:59.130 --> 00:30:00.630
We'll help you..
614
00:30:00.630 --> 00:30:02.810
So if you'd like to
learn more about our app
615
00:30:02.810 --> 00:30:04.430
you can give us a call about that too.
616
00:30:04.430 --> 00:30:08.030
It's 800-323-4238.
617
00:30:08.030 --> 00:30:11.591
Yeah. A- a- as well as if
you would like, you know,
618
00:30:11.591 --> 00:30:14.832
some personalized, individualized
help about, you know,
619
00:30:14.832 --> 00:30:18.412
whether it's how to find vision
rehab services near you, how
620
00:30:18.412 --> 00:30:20.973
to find any kind of
help that might be local
621
00:30:20.973 --> 00:30:25.453
to you versus online help
versus getting into a support
622
00:30:25.453 --> 00:30:27.974
group or getting a peer,
you know, just give us a
623
00:30:27.974 --> 00:30:28.974
Call.
624
00:30:28.974 --> 00:30:32.174
And it's important to
reiterate, it is all free.
625
00:30:32.174 --> 00:30:35.575
So if you're listening and
you haven't created a Hadley
626
00:30:35.575 --> 00:30:36.955
account, give us a call.
627
00:30:36.955 --> 00:30:40.955
If you need some assistance
with that, we'll have a link
628
00:30:40.955 --> 00:30:44.156
to the series in our show notes.
629
00:30:44.156 --> 00:30:46.836
You can go right to that.
630
00:30:46.836 --> 00:30:50.657
And what you've heard today
is just a sneak preview.
631
00:30:50.657 --> 00:30:52.837
So there's lots more coping strategies
632
00:30:52.837 --> 00:30:55.378
and a bit more of the member stories in
633
00:30:55.378 --> 00:30:56.658
each of those as well.
634
00:30:56.658 --> 00:30:58.218
Plus there are, I think, three
635
00:30:58.218 --> 00:31:01.678
or four that we didn't
actually share anything from,
636
00:31:01.678 --> 00:31:03.619
so lots to check out, right?
637
00:31:03.619 --> 00:31:05.299
There's lots to check out.
638
00:31:05.299 --> 00:31:07.419
I really do encourage
you to, to do that check,
639
00:31:07.419 --> 00:31:08.859
check them out and get, let us
640
00:31:08.859 --> 00:31:10.160
know what you think about them.
641
00:31:10.160 --> 00:31:13.200
We are always learning
from the people that we're,
642
00:31:13.200 --> 00:31:14.560
we're hoping to help.
643
00:31:14.560 --> 00:31:16.081
So tell us how it strikes you.
644
00:31:16.081 --> 00:31:19.081
Tell us how we could do
better. It's important to us.
645
00:31:19.081 --> 00:31:22.041
Well, Joan, I wanna thank
you so much for stopping by
646
00:31:22.041 --> 00:31:25.002
and listening to these clips with me.
647
00:31:25.002 --> 00:31:26.722
It's been fun to chat.
648
00:31:26.722 --> 00:31:29.502
And we, you might just
get dragged in front
649
00:31:29.502 --> 00:31:31.323
of a microphone again.
650
00:31:31.323 --> 00:31:33.863
Oh, no. No, I would love to.
651
00:31:33.863 --> 00:31:35.390
It's really been a, it's a delight.
652
00:31:35.390 --> 00:31:38.524
And I am delighted to be able
to represent this new series
653
00:31:38.524 --> 00:31:40.804
because I think we're gonna
help a lot of people with it.
654
00:31:40.804 --> 00:31:42.464
Well, thanks so much for dropping by
655
00:31:42.464 --> 00:31:43.785
and thank you all for listening.
656
00:31:45.685 --> 00:31:47.465
Got something to say?
657
00:31:47.465 --> 00:31:50.886
Share your thoughts about this
episode of Hadley Presents
658
00:31:50.886 --> 00:31:53.486
or make suggestions for future episodes.
659
00:31:53.486 --> 00:31:55.226
We'd love to hear from you.
660
00:31:55.226 --> 00:32:00.147
Send us an email at
podcast@hadleyhelps.org.
661
00:32:00.147 --> 00:32:03.187
That's P-O-D-C-A-S-T
662
00:32:03.187 --> 00:32:05.630
at HadleyHelps.org.
663
00:32:06.668 --> 00:32:08.168
Or leave us a message
664
00:32:08.168 --> 00:32:12.550
at 847-784-2870.
665
00:32:13.589 --> 00:32:14.422
Thanks for listening.