Cheryl's Story.

When Cheryl turned 60, the eye specialist confirmed her instinct that she’d face major vision loss, like her mum. It meant handing in her driver’s license, which she treasured. Find out how she’s doing and what got her through some of the toughest days.

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Episode Transcript

S1 (00:10):
I just lie on the bed reading and and I
think that's how that kind of cold, but unconsciously, I
think I was reading in case I couldn't read anymore.

S2 (00:24):
Losing your vision can be life changing. You might be
left wondering what next? Cheryl's living well with severe vision
loss in her own time. Cheryl access a range of
services that have enabled her to still do the things
she enjoys before losing her vision. This is her story.

S1 (00:48):
My name, Sharon O'Brien. I'll be 74 in December. I'm
retired nurse, I have glaucoma. I've worked all over the world.
I like to paint and draw. I did like to
play golf till I couldn't see the ball anymore. Not
that I was any good.

S2 (01:05):
I'm Gerald. So what is your eye condition?

S1 (01:10):
I have actually glaucoma and I also have macular degeneration
disease and I have the dry, tight.

S2 (01:18):
When did you notice your eye condition changing?

S1 (01:21):
Oh, probably. It's been the last 10 or 11 years
that has been a gradual deterioration.

S2 (01:32):
Right? And so how did you getting your diagnosis actually feel?

S1 (01:38):
Well, back then I kind of thought, Yeah, I will.
Maybe I would get it. My mom had it and
I thought, Well, it's very, very likely that I could
get it. So I was very aware, too, to watch
for it.

S2 (01:52):
And so when you notice the change, you knew that
you had to talk to a professional about it and
you knew you had to do something about it. But
how did you feel about knowing that this was something
that you were going to be dealing with? What sort
of emotions did it bring up to you, especially as
you did you have noticed that you started to experience
more issues?

S1 (02:11):
Yes, it is. It is a big impact and you
do know that it's probably not going to impact your
body and people close to retirement. That's when the change started.
And that was about 10 years after initially being told,
and it was then that the doctor told me that
I should prepare that I would have significant vision impairment

(02:36):
by 70. That's the kind of thing that I think,
you know, you think, Oh my God, what am I
going to do? What am I going to do? And
this I think the saddest day was when I had
to hand my driver's license.

S2 (02:48):
That's a big change, isn't it?

S1 (02:51):
Oh, it was a big change. Kids have adopted, Oh Cheryl,
you know, he said, you know I. He said, You know,
Willie was right, Jack. I'd always been a pretty good talker.
You know, I got a lot of reviews pack, but
I was probably at about a 45 degree angle. And

(03:12):
I thought, Oh dear, I think it's time I didn't
drive the car, but I just couldn't bring myself to.
It's like having a bit of independence and but, you know,
you just feel so low because it has given you
a great deal of independence and you're able just to

(03:33):
just pop out and we're jumping here or that. And,
you know, I felt a bit low. And I couldn't.
And the thing that I couldn't do for a while,
I had to sell the car, but I couldn't. I
just couldn't bring myself to do it for a while.
How long?

S2 (03:52):
When you say when you say a while, how long
did it take for three months? Okay.

S1 (03:59):
Three months. I knew that it had to go. I
knew that it had to go. It's a big impact,
a big impact on you and you think, Oh, and
I didn't get my license until late. I was about
40 when I got my license. And then I just
treasured it and I thought, Right, I'm going on the bus.

(04:26):
So I started doing that. I still miss it enormously.
It was a bit like the golf. I had to
give that up since I've had to give it up.
I've found other ways. Mm-Hmm.

S2 (04:41):
You said you went home that night and you were
feeling pretty low and you were pretty quiet. What was
going through your mind, like? What was making you? What
were you really contemplating?

S1 (04:52):
Each time you lose something, you kind of have I
guess this sounds like you have like a period of grief.
I think I think really, I just thought, Oh, what
am I going to do? I've lost my mobility. I've
lost this, I've lost that. And then I go, Know
you haven't come on. Come on. And really, I really

(05:13):
was down and I thought, Look, you are not the
only person in the world, and I know I always
keep going back to that. And I thought, Hey, no,
come on. The way to solve the way to solve
this is to start is to start using the things

(05:33):
you've put in place. There were days when I was
just quiet, but you know, I tended to spend, oh,
I guess, call them pyjama days. Yeah, I was lying
on the bed and not funny enough, the what did
the most was read. I'd read and read and read.

(05:55):
It was like I was going to lose something. And
and I read and read and read and read my brother.
Are you getting up today? Oh, I said I might. Yes.
And so and then, you know, after, you know, two
or three days, four days, you think, Oh, what the hell?

(06:17):
Then you think, Oh, I'll read a book again. So
I get I just lie on the on the bed reading.
And I think that's how that kind of coped. But unconsciously,
I think I was reading in case I couldn't read anymore.

S2 (06:33):
Have you actually also spoken to anyone in a professional
capacity about mental health or emotional support?

S1 (06:41):
Yes, I do actually see somebody I over another issue,
but that's very good because all those things run into
one another, even if you just go to a counselor
just for a few sessions. I'll think that great idea
because you can say, Well, look, I just don't feel
good about it at all. I'm just really angry that

(07:03):
this has happened to me and I, and I just
can't cope. Don't be afraid to ask and go and
seek some professional help, you know, go and get some
good advice from either a counselor or psychologist or psychiatrist,
whatever you need. I've done that, and that works.

S2 (07:25):
We've heard from other people in this situation, Cheryl, that
experience a type of yes, you're what you said, like
a shocked. There can be some type of grief and
then I guess it's about then trying to come up
with a plan for yourself. Would you agree that that's
kind of what you get?

S1 (07:44):
Yes.

S2 (07:46):
And how are you managing that? So what have you
put in place?

S1 (07:50):
I was determined that I must try because if this
was all the site I would be left with, I
better get used to it now. It was very frustrating
at times. And it still is. I have put wrong
colored shoes on. So last year, I had two Falls Creek.

(08:15):
But anyway, we have to laugh. You know that

S2 (08:21):
as long as you're okay, I guess that's the main thing.

S1 (08:24):
Yeah. Well, this is it, you know? So I got
up and have to rush. I think I might need
a cane. So I called that Vision Australia people and
spoke to them and they said, Yes, I think that's
a good idea. And look, it gave me some confidence
back once I've used the cane. Also, it's good for
crossing roads. They can see that you have a patient

(08:44):
in pain. I mean, because I've got the white canopy
and had people come up and say to me, Well,
how do you get all this? They said to me,
and I'll direct them off to Corbijn. Australia will go
to their GP and and and get, you know, get
help that way.

S2 (09:01):
That's great. So how did you know or how did
you find out about Vision Australia in the sense that
you could get through that?

S1 (09:09):
They came and made sure I could use the stick properly.
And they also I've got a little handheld magnifier. It's
wonderful for I got that last year and finally, I
could read a menu because, you know, sometimes everything always
seems to be smaller than it should be in print.

(09:30):
And also like if you were in the supermarket and
things like that, you want to see what's in something
or you try and make sure you've got the right product.
All those kind of things are really good. And then
this year we got approval from me indicator. It's a
big desk magnifier, and that's really made a big impression,
a big, a big difference for me. I can read

(09:52):
my art books and I can also fill out forms.
The writing is no longer any good, but I can
see all those things to do, which is really good.

S2 (10:02):
So along with being able to get some orientation and
mobility support, you've also tapped into some assistive technology there
and some Oh

S1 (10:12):
yes, it's very good. And I've got like a big iPad.
And at the moment, the letters, some of the stuff,
isn't it? But I can actually talk. Turn that into
a talking book or I can download talking books because
I was always a huge reader. So all those kind
of things, I can make the print bigger and all

(10:32):
those things. And if I can't see, my iPad actually
will read the page. Yes, but now I have. I
have the Apple Card, and I just use that for
for so I can turn the music on. I could
turn the lights on. They can do a lot of
things and they've talking books, which have been great. I
just relied on the talking books.

S2 (10:53):
Well, it's always nice to hear. You've really obviously articulated
and demonstrated today that there's a lot of really great
support out there in lots of different ways. One of
the things you touched on briefly was around the type
of support you received through the government. What have you
actually exist and how have you found that process to
have been?

S1 (11:14):
The NDIS is out there for a lot of people.
There are things that I can do to. I have
to pay for some of that, but the aged care
people have been very good. I've got all these numbers.
They've run me out and said, Look, do you need
any support yet? And I say, Look, no, I'm managing.

S2 (11:29):
Do you find that checking in to be a helpful
way of managing? You know what you're going to need?

S1 (11:37):
It is, it is. It is good. You know, they
check in and of course, the vision people say, Look,
if you get into trouble or whatever you just call
because we can advise you with the best thing to
get out of telephone, that's got the big numbers. All right.
Then like about a 50 cent piece, I think you
probably just need to just say, look, put it in

(12:00):
very simple language liability specialists, somebody that will teach you
to use a cane and how and how to go
up and down stays and just those simple things that
that's good and occupied. People think architecture that should keep
me amused, but it isn't really it so that you

(12:23):
you're able to do your regular daily living with some assistance.
And sometimes you need, you know, there's lots of different
things that you can have. If it really is bad,
you can get like little thermometers to tell you when
things are full or all those kind of things. The
shop is wonderful. The best idea is to go through

(12:46):
the vision SJ people, because they'll say, I don't think
that's good for you, but this might be better

S2 (12:53):
knowing your experience and your understanding now of of what
you've been through in regards to vision loss. What advice
would you give to someone who? Is recently diagnosed with
an eye condition.

S1 (13:05):
Oh, look at whole division Australia. Just having that kind
of support so that they can get you on the
way is good because then they can say, Well, look,
you entitled to this can be too proud to ask
for help. I'm sure there's quite a few people out
there that should be using a white cane. And I

(13:27):
think if somebody says, Oh, I'm too embarrassed. And I said, no,
I'd be more embarrassed split in the middle of the street.
I just have to go with the sensible approach until
I go to town on the bus, even if I
only go one way. Somebody says, But we can come
pick you up. I suggest the patient take that bit
of independence away from me, which is important. Look, you

(13:49):
might make a mess of it, but whatever you're doing.
But so long as you don't chop any fingers off
or stuff like that, you can still cook. I can
still cook. I've just got to be careful. Got to
get in a good light. Look, there's a lot of
things you can do.

S2 (14:05):
What you demonstrate. Cheryl, really well, is is, you know,
it's good to be positive and it's good to be proactive.
But it's also really important to make sure that you
know what services are available, and you also also use
your voice to ask for help when you need it.

S1 (14:22):
Yes. And look, there are many couples out there. One
will have the disability with the eye side and the
other one won't. There's a lot of things that can
be done. So you know, you can get some assistance
with gardening or you can get some assistance with cleaning.
So one part is not taking on all the responsibility
and you don't have to go in and nursing home you.

(14:43):
You can manage well at home, and that's something that
you people have to remember. You've got to learn to
use other senses. You've got to listen and you've got
to feel because you can do a lot if you
just stop and think and people will help people help.

S2 (15:03):
I feel like you've really taught me a lot today,
and I've really enjoyed hearing about your experiences and pleased.

S1 (15:11):
I've been done to get I, I, I every now
and again. I have a hissy fit. And it doesn't
mean it doesn't, you know, I go along. But as
the doctor told me to listen, when you're having a
bad day having obesity, that's when you call a friend
and said it's time for lunch. We've got to go
for coffee.

S2 (15:31):
That's good. I think I think you nailed it as well.
When you when you need help or you just need
someone to just listen. It's always good to reach out
and see what's in it. Yeah. So knowing all of
the different things that you have to do to continue
to work with your eye condition, what's something that you
think or that you're already planning on making sure that

(15:54):
you have the support in place for things that you
want to do in the future through Vision Australia as
your eye condition progresses?

S1 (16:02):
I think I'm very lucky in the fact that I've
got a lot of things in place now. I think
the only thing that would probably would be is to
make sure that I remain independent and keep going.

S2 (16:18):
So it's all about independence and making sure, yes, you've
got the strategies in place to continue to do what
you want.

S1 (16:25):
Yes. Yes. Extreme jealousy, you say yes. And then a
fairly often they say, Well, what can we get for you?
And it might be even just like a Christmas or
a birthday present, like a little Google that you say, Hey, Google,
what time is it? Hey, Google Play, such and such
music or whatever, all those kind of things really do.

(16:46):
Don't cut yourself off. Don't cut yourself off from socialising
and doing things like that. And look at this next
year I'm hoping to. We have the bassist we have
like the Summer and Winter School for art. I'm totally hopeless,
cause you can't really say a lot. But look, I
had such a wonderful time. Not this year, but last

(17:08):
year doing very bad paintings. But what does it matter?
The whole idea was everybody to have fun, so you
don't just don't give up. Just whatever you do, don't
give up and don't don't stop doing the things that
you like.

S3 (17:26):
If you or a loved one are experiencing vision loss
and would like to know about the range of options
on offer to you, please call one 800 eight four
seven four six six or visit Vision Australia dot org.