Tony's Story.

Tony was a celebrity chef on the Foxtel Network. He had 4,000 live shows across 100 television networks – he was that good. When he started losing his vision, cooking was virtually impossible. This is Tony’s experiences of living with vision loss and what he did to get back in the kitchen.

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Episode Transcript

S1 (00:03):
At first, it was very hard to explain to people
that my vision had decreased so dramatically because they appeared
to so many people to be still so able in
so many different ways because I've always been a very
practical person trying to explain to them that I really
can't see. It was very difficult.

S2 (00:24):
The onset of vision loss no longer being able to
see properly. Can be frightening. Devastating and certainly is life changing.
But in time, not all bad. Many tell of the
varying degrees of turn around. One such person is Tony Braun.
Tony can tell us the story of his lived experience

(00:47):
of this life transition. So tell us a bit about yourself.

S1 (00:52):
I'm Tony, and I'm 61 and I live in Sydney.

S2 (00:56):
The food game's been very important in your life. Give
us a bit of a potted history.

S1 (01:00):
I started off as an apprentice and worked my way
through hospitality, ended up owning my own restaurants and bars
and cafes, and all that sort of thing was all
very successful and had a great team of people around me.
And one day the phone rang and it was Foxtel saying,
We need you for a few food effects. Episodes on
Foxtel then went on to be, if you like, a
bit of a celebrity chef. I did over 4000 live

(01:23):
shows and over 100 television shows. I could do it
with my eyes closed, and then some years later, I
was having a bit of a break from that and
I noticed my eyesight wasn't right and I thought, I
just need to go to the optometrist and get my
prescription upgraded. Did all of that and ended up being
tell about you've got cataracts and what often went through

(01:45):
all of that procedure, and that didn't work terribly well.
And they said, Oh, hang on, there's something wrong here.
We need an MRI. And then that came back that
I had what's called optic neuropathy, the optic nerve, which
connects the eyes to the brain that's damaged and the
signal doesn't get through. So what I'm seeing comes through

(02:06):
in pixels, and that takes a while for my brain
to get a picture up.

S2 (02:10):
So how long was that period from when you first
noticed something until we realised my life's changed?

S1 (02:19):
Yeah, it's interesting when I first went to the optometrist,
got the referrals, went to see the surgeon and so on.
It would have been, I suppose, the 12 months, maybe
18 months, nearly two year period until I got that
final diagnosis. It was very difficult to explain to people
that I had lost my eyesight because I didn't have
that diagnosis at that stage and I hadn't found out

(02:42):
about the things that I could do to make things better.
And I didn't see myself walking around with a white
cane and using signifiers and all these great devices that
are available and the family you tried to explain to
them and they say, Oh, you need to go and
get your eyes checked.

S2 (02:57):
It must have been quite a change for you personally
being a high flyer, very successful person. And suddenly you
were needing to turn to support services. In the beginning,
you didn't know where that would come from, but must
have been a difficulty for your confidence and self-esteem.

S1 (03:17):
It was absolutely because I was tossing pots and pans
around and cooking things in 30 seconds. I lost my
confidence in the kitchen. I was burning things and I
couldn't do things as well as I used to. And
I thought, This is crazy. I want to be able
to cook again. And I was, you know, finding I
was just checking stuff into a slow cooker and rather

(03:38):
than doing things the way I used to. So I
had to develop a different way of doing things, a
new way of doing things. And with the help of
Vision Australia, I was able to do that.

S2 (03:50):
Yes. Firstly, how did you link up with a blindness
organization in this case, Vision Australia had that come about?

S1 (03:57):
The first thing that anybody needs to do if anybody's
got any sort of disability is make sure you've got
a good GP who can refer you to these different
things and different places. And I always referred to Vision
Australia and they assess you and you do everything in.
I was diagnosed as being legally blind from that meeting.
I walked away. She gave me some magnifying accessories devices

(04:21):
and book me in to see a lovely Lady, Margaret Sturgell,
who had come to my home and present me with
my white cane and take me for a walk around
and show me how to use it and start that
process of building confidence. And that's when I was. I've
suddenly felt okay. I've got some support now with the

(04:43):
fish in Australia, and that's just the beginning because there's
so many more support services that Vision Australia offer over
and above that once you're involved with them as a client.

S2 (04:54):
So take us through some of those other services you
got involved with.

S1 (04:58):
There's a part of Vision Australia called Tele Link, so
people who are all over Australia who might be isolated
in regional areas or might be feeling personally isolated. It's
a group where people pick up the phone each week
or fortnight or twice a day in their groups, with
crosswords and social groups, all sorts of group with all

(05:21):
sorts of different languages and so on. And that's a
group where people can just join and talk and be
part of. And I started my own group called Confident Cooking,
and during that process of running that group, I got
my own confidence back in the kitchen and was able
to share that with the people in my telling linked
group of how to cook things differently, you know, maybe

(05:44):
do things at a lower heat and little tips and
tricks of how to cook things and use all sorts
of different gadgets which are available from visioned Australia and
so on. Talking scales So when you're measuring out ingredients
to make a cake, for example, the talking scales will
tell you how many grams or whatever it is. And

(06:06):
there's even a talking microwave, which is fantastic, and it'll
talk to you and tell you how many minutes or
whatever it is you need to cook something at. And
there's a hot plate that talks to you, and there's
a thing that you can put in your coffee cup
and there's you pouring the hot water in. It will
beep when it gets to three quarters of the way up,
half way up. All of these things are extremely helpful.

(06:30):
Plus all sorts of hints and tips of wearing gloves
on your hand when you're taking things out of the oven.
But one of my favourite tricks I say to my people,
if you don't have those, put some long socks on
your arms because they'll protect your forearms from burning.

S2 (06:44):
Tony, what do you like cooking these days?

S1 (06:47):
Everybody loves a good old spag bol spaghetti bolognaise, right?
And I make a one that's mostly vegetable spaghetti bolognese.

S2 (06:55):
Now, once your state of low vision had set in,
you could no longer just pick up a piece of
paper that someone had handed you and read it or
write yourself a note. Look at signs in the streets,
all sorts of things like that. How did you go
about an alternative way of doing what you used to do?

S1 (07:13):
Well, I had all sorts of things when I went
out onto the street. I had a lot of those
like a telescopic magnifier, things which I could use to
read things that I desperately needed to and another one
of the funny things I did. I made a sign
which I laminated in plastic, which had taxi on one
side and the bus route number on the other side.

(07:37):
So where on one side of the road, I'd hold
up the taxi sign with my white kind, and if
I wanted the bus, I'd hold up the bus, you know,
the bus route number. And if I needed to see something,
I'd get my telescopic bag the far. And I see,
for example, if the don't walk sign was green or
red and I could see that it became my normal,

(07:57):
my new normal.

S2 (07:59):
When you were involved with Vision Australia, were you able
to get computer skills, keyboard skills, etc.? There.

S1 (08:06):
Oh, goodness, only in this last week. These are some
of the wonderful things that Vision Australia do of, I
called Vision Australia for some tech support on my computer.
I had a simple problem. All you have to do
is say, Yes, I'm a client of Vision Australia. They
look you up and they say, yeah, and they put
you through to the technical department. And there are so

(08:27):
many other things they can do, like recommending programs that
will read to you and interact with you. And that's
a service that a lot of people don't realize that
Vision Australia has. And also Vision Australia will send somebody
to their home and help you with things. And the
one thing you really need to learn is to phone

(08:50):
Vision Australia. And just ask any question because you'll find
they have so many different services that will help you.

S2 (08:59):
You've now had to probably get familiar with the keyboard.
Do you look at the screen or does the computer
speak to you? Or do you have a mix of both?

S1 (09:08):
I've actually got a great big 55 inch screen on
my computer, and I've got a Zoom thing so I
can zoom right in through Vision Australia, I got one
of the keyboards which has got the bright yellow keys
on it with the big black letters and numbers on it, which,
when you need to look at it, is so much easier.

(09:30):
But also with the computer. It's got voice recognition and
you can just say that the computer, okay, read what's
on the screen and it will read, you know, an
email or a letter or whatever for you.

S2 (09:42):
Do you use a smartphone?

S1 (09:44):
Yes, I do. I've recently got myself a new one.
The wonderful part about the new phone I've got is
you just say, Hey, Siri, what's the temperature and whatever?
Or it's also got a thing called voiceover. And you
just say, Hey, Siri, set up voiceover and it just
reads everything to you that's on the screen and reads
they submitted to you. And if somebody sent you an SMS,

(10:08):
you can tap on it and you can just dictate
the estimates and send it. It's just incredible technology.

S2 (10:15):
Tell me about funding. What have you accessed from the government?

S1 (10:19):
Initially, I didn't know where it was going, but I
got myself on the DSP Disability Sport. That was something
I'd done previously for other health issues. But I found
out some time ago about the NDIS, and at that
stage it was really quite in its infancy. Make sure
you go to your GP and hopefully they they will

(10:42):
do it, or they might have a practice nurse and
get somebody professional to help you fill out that initial
publication cleaning. Occupational therapists. Just about anything you could possibly imagine.
If you want somebody to help you go and do
your shopping each week, they'll provide funding for that. It
is just such a wonderful service for people with any disability,

(11:03):
but particularly for us and one of the main things
I must emphasize when you have that first meeting, when
they're saying, Would you like help with this? Would you
like help with that? Say yes, because you'll get that funding.
You don't necessarily have to use it. But if you
can then just say, Okay, I'd love to have somebody

(11:23):
come and help me do my shopping or somebody just
to take me out for a walk or take me
to a drive, or, you know, that sort of funding
is available. And it really is a wonderful thing that
the NDIS provide. So I'm really happy that I've got
that service and these people who come and provide the services,
they become your friends.

S2 (11:44):
Is there any one situation that stands out in your
mind about relating to the changes in your relationships because
of your vision loss?

S1 (11:54):
Yeah, at first it was very hard to explain to
people that my vision had decreased so dramatically because I
appeared to so many people to be still so able
in so many different ways because I've always been a
very practical person trying to explain to them that I
really can't see. It was very difficult. They just couldn't
accept it, and I found that really quite upsetting. And

(12:16):
then you got to the stage where people would be
treating you like, Oh, okay, would you like me to
do this for you? Do that for you? And I thought, No, no, no.
I'm just saying I can't see that terribly well. I
just need a little bit of help. I don't need
to be treated like I'm completely disabled. And that took
a long time with friends, family and my partner to

(12:39):
let them understand that I can manage. But I just
need a little bit of help on some things. But
please only when I ask, don't don't just do things
automatically for me, you've got to find that balance between
give me a little bit of help when I ask,
but don't overdo it. Eventually, people got that, and now

(13:03):
I'm in a situation where people understand it automatically and
it works very well. There is a long period of
time to get that understanding with your friends and family
and so on. And when it eventually happens, it suddenly becomes.
Thank goodness I can now enjoy being with someone's own
and enjoy this experience again. Instead of that transitional period

(13:26):
where you do, you actually get quite upset and quite
frustrated and in fact, quite angry. And fortunately for me,
I did see a psychologist for a while and I said,
this is my normal and explaining to my friends, this
is my normal. And then, you know, eventually it's just
like something clicks and then suddenly everything starts to run

(13:47):
smoothly again.

S2 (13:48):
Tony, you're a young man. You lost your vision during
your 50s and now you're just north of 60. What's
your advice to someone else who's sort of around about
the same stage of life?

S1 (14:01):
Go and talk to your GP, find somebody that you
trust or, you know, you go to your local community center,
they usually have a social worker. Find somebody you can
talk to. Not necessarily a family member or friend, but
somebody professional who you can confide in. Because often with
family and friends, they all know everything's about everything that

(14:22):
they know, nothing about anything. You in reality, the most
important thing is for you to get somebody that you
trust and can confide in and somebody who cares for
you and understands you.

S2 (14:34):
Well, that's why we talk to somebody with lived experience.

S1 (14:38):
There's nothing we can't do. We just do it differently
and often would be because we do it differently. We
do it better.

S2 (14:47):
If you or a loved one are experiencing vision loss
and would like to know about the range of options

S1 (14:51):
on offer to you, please call 1800 eight four seven
four six six. Well, visit Vision Australia dot org.