Paul's Story.

After living 53 years with reasonable vision, it took just a few hours for Paul to experience severe vision loss and 18 months later, blindness. With the right supports, he’s still doing all the things that matter to him, including building hot rods.  Listen to Paul’s honest experiences of life after vision loss.

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Episode Transcript

S1 (00:10):
I was 53, 54. You know, it's become this person,
and then all of a sudden my whole world changed.

S2 (00:18):
The onset of vision loss can be frightening, devastating, and
it's certainly life changing. Yet many do tell us that
in time things do turn around. One such person is Paul.
Listen to Paul's story of how he's living with vision
loss and how a range of services have enabled him
to still do the things he enjoys before losing his vision.

S3 (00:42):
My name's Paul, is the autumn of 59. I live
in Sydney. I worked full time as a proposal engineer
for a global company. I lost my eyesight about five
years ago, maybe six.

S2 (00:57):
Paul, what is exactly your eye condition and how long
have you been managing that?

S3 (01:03):
I guess I was born severely short sighted and I
guess along my life's journey. My ophthalmologist always said to me,
I hope you're right. This never times touch because you'll
be in big trouble. And unfortunately, when I was 53,
sitting in my office at work and my right retinal detachment,
it was like someone was pulled a blind across your eye,

(01:23):
you know, over a period of hours. So that was,
I guess, the start of my journey into vision loss.
I have no operations to try and correct it. That
was unsuccessful. But then unfortunately, life. I'm slow to the left.
I'm decided to follow suit. So I ended up with
very low vision in my left eye. And then I've
developed fairly severe glaucoma, which eventually took my eyesight away

(01:48):
after about 12 months.

S1 (01:51):
It's the worst feeling you can ever have, and it's
a feeling of total helplessness. I'm a very organized person.
You give me something to do and I'll get it
done no matter what. You know, like, I'm that person.
And you know, I was in a place that I thought,
Oh my God, I don't know what to do. You know,
it was so far out of my life experience of,

(02:13):
you know, all all the problems, all of my life,
all I've ever done is fix things. I was 53
when I lost my eyesight and so on, I have
53 years to become that person. And so, you know,
I can't remanufacture my life in five minutes. You know,
I have to learn how to live in a totally

(02:36):
different way. You know, it affects every aspect of your
life and you have to learn again. So it's somewhat
like going back into your childhood. When I lost my eyesight,
I didn't. I didn't hide nothing. You know, for two days,
I had to sit there and and wallow in this.
So I suppose it was self-pity and and then and

(03:00):
then you know, me, me being me kicked in and said,
Hang on. Then I kick myself in the bum and
said this, that this is bullshit. Let's get on with it.
And that's essentially what I did.

S2 (03:11):
So you were managing your eye conditions as you were
going along. But the actual impact and the changes that
you just see didn't happen quite quickly. Sounds like over
about a year. Yes, up to that point, did you
notice things were changing? More. Were you noticing any actual
changes in your eye condition or did it happen quite

(03:34):
quickly when you mentioned about the detached rumors?

S3 (03:38):
Oh, it was very unexpected. I mean, fairly confronting. How
did you feel about that? I thought that I could
fix it.

S1 (03:46):
And for me personally, it didn't really hit me until
I'm going to say 2018. So I guess you don't
understand who you are as a person anymore, you know, because,
you know, I wish I was 53, 54, you know,
I'd become this person. And then all of a sudden
my whole world changed. And so I didn't really know

(04:07):
who I was or no or what I could offer
any anything or anyone. So I hit rock bottom. I
think it'll roll finally got me, and I guess I'm
going to tell you, I even considered not being here.
That's how low it got it was because I got

(04:31):
to a point where I didn't know what to do.
I was stuck again, much like I was in the beginning.
You know, I guess I grieved in a certain way,
you know, and everyone agrees differently. And I think a
lot of the time, it's the differences between people grieving
that causes the biggest friction. I grieve to sort of

(04:52):
really quickly where my wife's grave. I mean, she's probably
still grieving. And she didn't accept that I'd lost my eyesight.
She didn't accept I had to use a white cane,
and she she just didn't accept it. And, you know,
and on the flip side of that, I guess the
way I reacted to that was, well, I don't deserve

(05:15):
to be with you because you know what, my obviously
my self-worth was low. And so I felt, you know,
this is a bit of a dark time. I guess
I felt that I she was better off going and
being with someone that. Wasn't blind. And, you know, to
her amazing credit, she she wasn't having a bar of that,

(05:37):
and then she had as much as she was struggling.
And I can I guess I can highlight that by
saying every time the instructor came, she left. She went out,
she went home, she went into the bedroom, she went ahead.
She didn't. She didn't want to face. Place that, you know,
that realization that the item inspector was there to teach

(05:58):
me to use a white cane. We've had an amazing
life together in the 13 years we've been married. My
my first hot rod that I built, which was an
orange take on a Ford. I bought that when I
was 25 and built it, and we used that for
our wedding, for my parents wedding card, and I sold

(06:20):
that as a result of losing my eyesight. And within
the day it drove away, I sat and I described what.
I'll just take a minute because because that car, I guess,
epitomized me, you know, I put my life, my soul

(06:42):
into it and. And it was just a I guess,
a realization to me that, oh, it's blind, you know,
it was like a punctuation mark. It said, You are blind,
you can't drive anymore.

S2 (06:57):
So what was the process of you kind of starting
to deal with that?

S3 (07:02):
I went to see a low vision optometrist and he
basically tried to correct my vision and couldn't. And so
he basically diagnosed me as being legally blind. And I
guess that to me was a reality check. But then
he was really amazingly supportive, and he started offering me
a lot of information, you know, with organizations such as

(07:25):
Guide Dogs and Vision Australia, and also companies like Quantum
Gravity and the Human Where. And so he gave me
all this information. So to suggest that I should contact
some of these companies that did help me. So I
did contact in Australia and I spoke to they had

(07:45):
a coordinator of services. I think it was at the
time around the NDIS and I spoke at length with
her and she was really awesome. I then applied. So
I just I just contacted the NDIS and did an
application and sent that in and then waited through the
waiting period. And once it was all approved and I
had to figure out what to do with it. And again,

(08:07):
you know, I contacted Regional Australia, the lady that I've
spoken to prior to joining the NDIS. I felt really
comfortable with her and she actually started me in the
right direction. I can honestly say there's not many things
I can't do these days. I have a psychologist that
I talk to on a regular basis now, and it's
funded by the NDIS. I mean, I've had to help

(08:28):
around the house getting a handrail, put down the stairs,
down into our pool, and I had an O to
come out from Vision Australia and do an assessment around
the house and taught me how to cook a barbecue. Again,
you know, she introduced me to a talking cooking thermometer
and explained to me that, you know, all this talk
to a certain temperature. And she gave me those temperature charts.

(08:52):
There's such a wealth of knowledge out there that can
help you do anything you want and know other technology
I use. I've got a talking tape measure, which I
use very, very regularly. You know, when I'm working on
my car, I've got an audible spirit level that beeps
at me when it's level and I've got gadgets that
identify my clothes. So I've got barcodes and things on

(09:13):
under my clothes. Tell me what colour? It's a green
shirt or it's a grant or trousers or there is
there is so much technology out there that anything of
anyone wants to do, they just need to explore. I
decided I wanted to get some magnification so I could read,
and I contacted Quantum in the first instance and they

(09:35):
the guy they sent like a rip guy out to
see me. And so he actually sat down and did
a bit of an audit of things that he thought
I might need. And then through that, I contacted job
access and put in an application because I guess my
my biggest driver was I needed to work. I wanted
to work. I've been working on my life and I

(09:56):
still needed to work out of supporting my wife and family.
And so I think that was my driver. I just
thought I need to work.

S1 (10:04):
And even when I went back to work, I've been
there for nine years and I had the same reaction
from everyone in my office. They, some people wouldn't talk
to me and other people over help me. Hmm. And that.
Really got me down, you know, because I couldn't understand it,

(10:27):
you know, I knew all these people really well. But
after about two months, I just decided I needed to
educate them as well. So I got my own instructor
to come and. And explain everything about. John McCain in
a different light conditions and that sort of thing, and

(10:47):
then I spoke to them personally and they said, Look,
I'm Paul of St. Paul. I still have the same
sense of humor, the same everything. So I just can't see.
I said this, please treat me. The same issue always
treated me, and I'll ask you for help if I
need it. And you know, it instantly changed everyone's attitudes.

S2 (11:06):
So when you started to understand those sort of support
services out there, you mentioned you started to look at equipment.
What other things did do you come across that you
weren't necessarily aware of that you tapped into that you
found helpful?

S3 (11:22):
Once I did the quantum thing, they actually had to
get an assessment done by Visual Australia. So Vision Australia,
I contacted them and I sent a guy out and
he had to assess me for the equipment. But this
in passing like this, he was visually impaired as well.
And so I was chatting away to him and he
said to me, Are you on the blind pension? I said, no.

(11:46):
So I work, you know, full time. I'm not entitled
to any pension. And I quickly corrected that. Mr IRA,
though I couldn't. And so just, you know, I got
talking to him and he said that information with me,
as well as the Travel Pass, I could get, you know,
the train, the public transport travel pass. And he was

(12:07):
really a wealth of information I got from Australia. He
was just a nice guy, and he shared a lot
of the information with me. But also at the same time,
what I did was I contacted guide dogs to about
becoming or improving my mobility. And they sent out of
our name instructor to visit me, and she sort of

(12:28):
did an assessment as well. And she said, Look, and
she gave me a whole bunch of information. And she
also reinforced that, you know, the all the taxi subsidy
scheme and the companion car. And another thing she did
was offered me counselling. So she arranged for a psychologist
to come down and visit with me, and I saw
him probably for about eight months on a regular basis.

(12:51):
And that was a really big help.

S2 (12:53):
You mentioned that it was only him. So this orientation
and mobility support that you received. What were some of
the specific things that she was able to help you
with in terms of getting around? And what sort of
tools and resources did she introduce you to that have
helped you along the way?

S3 (13:12):
Okay. So I guess the first thing she did was
she introduced me to the wife the long time, and
I guess I went through the miseries with that like
everyone does. But you feel like you're in a strange
and different. But I guess what? What I figured out
pretty quickly was that it enabled me so independence. And

(13:33):
so I guess I embraced it. And so I did
a lot of training around my local area with her,
and they concentrated on travelling on public transport and busy
road crossings. And so it took me into the city.
We went up to Brisbane and I learnt how to
catch the train. I learned how to catch the bus.
I learnt how to get on a ferry. I learnt

(13:54):
how to go into shops and deal with the situation.
I guess the bonus there was because it was really residential.
I got to meet a bunch of other people in
the same situation, right? And that really helped me normalise
what I was going to do because you feel like
you're very alone, you know, and you're the only person
that's facing all the challenges facing. So I found that

(14:16):
really amazing to see. I just spend three or four
days with sort of four or five more people that
were going through similar challenges, and then I have to
share these experiences and share our knowledge together.

S2 (14:31):
So you mentioned before, you know, the the benefit of
being able to speak to a counsellor and and talk
about what you were going through. And I guess I'm
unpacking all of that over time. What was the main
benefits that you found with that? Why was it so
important for you to speak to someone about what you
were going through and get that type of support?

S3 (14:53):
Well, I think essentially you go, well, the main thing
is you go through a grieving process and obviously there's
this five stages to a grieving, the grieving process, and
then you don't necessarily go through one stage, you know,
and then we move straight into the next stage, just
sort of sometimes you go backwards and forwards from one
place to the other several times. And in my case,

(15:15):
I did because my eyesight was deteriorating, but it was
like a monthly thing. Every once a month, I seem
to be getting out of bed and someone had to
turn down the volume a little bit on my eyesight,
you know? So it was like I used to start grieving,
and all of a sudden I had lost a bit
more eyesight. I was like, is to knock me around
for a week or two? And so it was really

(15:37):
good to have someone to support me through that. And
as I say, I was going through. Grieving process and
having you validate what I was going through and give
me some strategies to help me deal with those situations
was really amazing.

S2 (15:51):
Can you just give me one example of the strategy
they gave you and how you applied it and the
benefit that came from that?

S3 (15:59):
I guess the main strategy was that it was normal.
You go through these emotions and you feel like you're
an alien or something, but really it's normal and normalizing
the situation, but also not not allowing it to take
control of your life. So one of the strategies he
gave me was that, you know, if I was going

(16:20):
through something, it was okay. But don't let it become
the norm.

S1 (16:26):
When when you start to heal and you start to
go down the road of getting back on track, you're
going to have a lot of frustrations and you can't
beat yourself up and you're going to be going to say, Well,
if I wasn't blind or if I wasn't, you know,
whatever it is, whatever reason that you're beating yourself up
about this wouldn't be happening. But it does all the

(16:47):
things that you do when is still a glass, when you,
you break a plate or whatever it may be, those
things happened before you lost your eyesight or your idea
of disability came along. And so just accept that they're
normal things. Just be kind and let yourself slowly, I guess,

(17:08):
build yourself back up to be the person you want
to be.

S2 (17:12):
What advice would you give to someone who's recently diagnosed
with an eye condition?

S3 (17:18):
I think the biggest advice I can give anyone is
to be patient with yourself and not set your expectations
too high. You know, you have to learn a truckload
of stuff, you know, to function as a person with
a vision. You know, there's a lot of new skills
you need to learn. There's even people, the people around you,
you have to educate them on what you need.

S1 (17:40):
So the best bit of advice I can give to
anyone is to be kind to yourself and to give
yourself time.

S4 (17:52):
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 300 eight four
seven four six six. Or visit Vision Australia dot org.