Episode 003 - Who The Heck is Ben “ Blind” Pettingill?
“Then I just burst in to tears for the first time since losing my eyesight. I recognised from that day the power of speaking up & how important it is to let other people in.”
In this episode of Talkin Tough Ben is in the firing line as Mike asks the tough questions and together they relive his experience of losing his eyesight overnight at age 16 due to a rare genetic disorder, Lebers Hereditary Optic Neuropathy. Ben has now lived his life as a blind bloke for 12 years but the challenges don’t go away. They just change as life changes along the way. Ben shares some of the things he has learned about tackling the cards life deals us all and how he keeps on top of his mental health in the face of struggle.
Talkin Tough is proudly brought to you by Ski For Life, an Australian charity dedicated to promoting mental health, wellbeing & suicide prevention. You can find out more at https://www.skiforlife.com.au/
If this Talkin Tough episode has struck a chord with you and you could do with some extra support, please reach out to a trusted mate or professional or call Lifeline on 13 11 14. https://www.lifeline.org.au/
listen to the full episode:
EPISIODE TRANSCRIPT:
Mike: Welcome back to Talkin Tough. I'm Mike, joined by my great mate Ben, we're a couple of mates who realize that we're better friends when we're leaning on each other during tough stuff. This podcast is only possible thanks to Ski for Life, an incredible Aussie charity dedicated to promoting mental health, wellbeing, and suicide prevention.
All things that, let's be honest, touch us in one way or another in life. The best way to make a difference is by talking about it, and that's what we're here to do, mate.
Ben: Absolutely it is. And we are out to redefine what it means to be tough. And as we are shopping throughout this podcast series the Talkin Tough definition of being tough is 'being able to be honest and, speak up when you are going through hardship or pain'.
And, that's something that we'll continue to work on. We'll continue to flesh out. And we'll continue to do it together.
Mike: Absolutely.
Ben: With everyone out there
Mike: Certainly is, and today I'm pumped.
Ben: Are you?
Mike: Today I am pumped. Absolutely, because I get to talk to you [00:01:00] my main man. I get to talk to you about your story.
I've heard it plenty of times, but I, must be honest it's something that I, can never quite wrap my head around what it would be like. And I'm really, keen to, deep dive into it, talk about some of your challenges and also more importantly how you dealt with it and how you maintain the motivation that you have. I know you very well. You're a very motivated, driven individual. And it's gonna be really beneficial for not only me as it always is but for the audience to hear a little bit about what it takes to overcome the unthinkable.
Ben: Mate, hit me.
Mike: Hit ya.
Ben: Hit me with your best shot as they say.
I think
Mike: it's really good to set a bit of context, understand a little bit about Ben and who Ben Pettingill is, but before we do that, I'd love to hear about obviously the, full circle. We'll get to what you've learned through the journey and through your journey. But the full circle, meaning that what was life like as a young whipper snapper growing up in Melbourne.
I want to hear more about that, [00:02:00] but more importantly, I want to hear what was some of the perceptions you had about what it made what, made somebody tough? What was your, idea of tough growing up, buddy?
Ben: Yeah, my idea of tough growing up. A couple of things. Footy players definitely come to mind.
Mike: Yeah, absolutely. Who are your toughest footy players? Give us a few.
Ben: I always remember my old man because he was Fitzroy supporter, but always used to talk about the good old days, back in the good old days when footy used to be full of tough blokes and there used to be Lee Matthews and there used to be blokes like this and that, that are just take hit after hit.
And like when, I'd be watching footy growing up, 'Ah.. They used to be tougher back in my day'. Yeah, 'back when we used to go down to local Oval and watch VFL, that's when you'd see the big hits. That's when the real tough blokes used to play footy'. So that was one side of tough. And then the culprit that was telling me that was probably my other version of tough my emotionless father, I shouldn't [00:03:00] say emotionless because he he does have emotions but
I've But,
I've managed to crack him later in life. But growing up, it was coming home in his, high-vis Timmy's a plumber and he would have his couch, his single, armchair in the corner of the lounge room. We were too scared to sit on that., That was dad's couch. And it was very much, 'oh, it is what it is'.
''No point talking about it. No point complaining about it. Let's just get on with it'. And, it was just, wipe your hands, keep moving on. And that was tough. To me it was., It doesn't matter what comes your way. Nothing's too big, nothing's too hard. You just do whatever you can to get through it and, you don't stop to acknowledge how it felt, what impact it had.
You just sweep it under the rug and get on with it.
Mike: Would you say that sort of rubbed off on you as a kid as well? You'd get up, you wouldn't like you for instance, you're a young fella. You look up to your old man, he's your definition of toughness [00:04:00] and you fall over and you take a chunk out of your knee.
Ben: I'm going to mum, I am not telling Okay. dad.
Mike: So you, bypass him because getting up and, showing emotion or showing any weakness was probably a bit taboo when it came to your dad.
Ben: There was times there where I'm out the back in the backyard. Going 'I reckon if I lean down on the concrete here and scratch my elbow on it a little bit it might scar a little bit on my arms, might get some calluses on my hand' because I always used to, when I was real young or when when dad was in a good mood and, let us sit on his lap once he got home from work and say goodday and whatnot.
Or if I'd have an arm wrestle with him. He had the big callous hands and the-
Mike: Yeah, you wanted to be like him.
Ben: And, you go that's tough. So I'm out the back rubbing my hands on the concrete or the rubbing rocks together to try and get calloused hands to be as tough as dad.
Mike: That's awesome. Looked up to him though. But I know you, you know that doesn't surprise me at all cuz you and your dad are are very close.
Ben: Oh best mates.
Mike: You go away a lot together. You are [00:05:00] very, similar in many ways, but very different in many ways too. You probably get a bit of your mum on you too, so she rubs off.
Thankfully that's the case.
Ben: Nice balance, hopefully.
Mike: Yeah, hopefully. Yeah. I think there's definitely a nice balance there, but I think when it comes to growing up in your household talk us through some of the things that were formative in your years.
What were things that made Ben Pettingill tick? And whereabouts did you start your journey.
Ben: Yeah, born and bred an hour outside of Melbourne, and probably dad more than anything ingrained in me a belief that if we were to go anywhere, it was away from the city.
So every chance we got throughout my childhood was camping, fishing, shooting, hunting, whatever, water skiing, getting out and about getting outdoors.
Mike: Great outdoors, yeah.
Ben: But it was because my old man in construction in the commercial side of things worked in the city. And, his love of the outdoors and camping and whatnot,
every chance we got, weekends, everything [00:06:00] like that, holidays, summer, winter, didn't matter, rain, hail, or shine. We were heading away from the city into the bush, up to the river, into the high country and, we were just getting out and about in nature and, getting into it. And that is, that definitely rubbed off on me.
That was definitely along with sport, along with my mates. Along with that, that typical sort of stuff that is just part and parcel of, growing up as a young fella. It was very much about every chance we could getting out and getting outdoors and just, loving that side of of it.
Mike: Love a bit of fishing mate?
Ben: Love my fishing, love my water skiing.
Mike: Absolutely.
And, your footy and, going- I love that. I like going the opposite direction to the city. If you do nick off if you do your dad's version of fun, I guess you could say was to just totally just hightail it be with his family, but be amongst nature.
Yeah. Something you do pretty regularly now?
Ben: As much as we possibly can.
Mike: Yeah.
Ben: Life changes but it is [00:07:00] definitely still a priority for, Both myself whether it's with my old man, whether it's with my wife and my daughter. As much as I possibly can. Even if it's just for a day.
Even if it's just for an overnight, it doesn't have to be a whole week or a couple of weeks or whatever. Just making sure, we've actually just recently now because we haven't done it enough, gone through the calendar for the next 12 months and put in a weekend every six weeks or so to make sure that we go camping, because that's one of those things that has been missing for probably a little bit too long.
Mike: Yeah. Yep, Absolutely, mate. Benny growing up every young, fella has dreams and ambitions about what they'll do when they're older. Talk us through that, mate. What would, what did you wanna do? What was your, sort of the, best thing you could possibly aspire to?
What did you wanna do career-wise?
Ben: It was pretty setting concrete for me, it was pretty simple because of my love of the outdoors, love of the country, love of the bush. It was a combination of that. And also my [00:08:00] grandpa and my dad they were also big into their planes. Grandpa worked for QANTAS, old man, he flew, he had his pilot's license before he had his car license because of the cost. Couldn't continue with it. Ended up a plumber instead of a pilot. But for me, that love of the sky through them combined with my love of the bush settled me on becoming a helicopter pilot. But more specifically, a mustering helicopter pilot was my absolute dead set dream.
Mike: Yeah. So you're a 16 year old. You've got this set and concrete on what you want to do, which is unusual for a 16 year old. So that's really amazing that you've got exactly what you wanna be doing when you're older. Talk us through that 16 year old Ben.
What happens next?
Ben: Mate shit hit the fan, to be completely honest. And it happened bloody quick.
So to paint the picture, I'm sitting up the back of my classroom and at school, year 10, [00:09:00] and looking at the diagram, the teacher's drawing on the board. And something doesn't seem quite right about this diagram.
I'm turning to my best mate, Stu, beside me, saying,' Hey Stu, does that diagram on the board, does that look blurry to you?' And he's like 'mate, what do you mean by blurry?', I'm saying 'it's just shimmering a little bit. It's a little bit hazy. Like it's just not quite right'. And he's going, 'mate, it is as clear as day'.
'What are you talking about? It is fine', I'm saying, 'but it's not fine. It's not quite right'. And we went backwards and forths. He's no, like, 'I'm not seeing what you're seeing'. I'm like I can't shake it. I'm not just noticing it here. It's now in my textbook, it's now in my phone.
It's now out outside the classroom after class. And I just had that, sort of weird feeling that we get sometimes that you, can't put your finger on exactly what it is. But you just know something's not quite right. And I thought, I better just run this past mum and dad now.
I went to dad first, dad a little bit more relaxed than mum when it comes to these sort of things and giving advice and guidance and whatnot. [00:10:00] Ran the situation past the old man and pretty simply he's just going, 'oh, mate, we'll just wait and see what happens'. No big deal. And I trusted Dad.
That's exactly what I did. I thought that was great advice.
Mike: Yeah. Bloody oath. Yeah. And, typical from Timmy.
Ben: Oh, absolutely. Very typical from a Tough Bloke. Yeah. Let's not overthink it. She'll be right. Let's not overcomplicate it. Let's not worry about it. Because worrying about means emotions.
Mike: And you think you went to your, old man as opposed to your mum because you, wanted the reassurance and in a way, like you'll be right. Is that Is thethe kind of answer you maybe were looking for?
Ben: Probably in hindsight.
Mike: Yep.
Ben: If not even that answer just someone that wasn't gonna make it bigger than what it needed to be.
Mike: Yeah, sure.
Ben: At that point in time, I thought he's just gonna tell it like it is black and white. And, that's gonna be as simple as it is. Now, I trusted his, advice. I thought, you know what? If my old man's not worried about it, I'm not gonna worry about it. This is gonna be sweet. [00:11:00] Only problem was without me knowing my old man.
He then rings my mum.
Mike: Ugh.
Ben: Now a mistake that he made. Now, I shouldn't say it was a mistake, it was probably the right thing to do. I think he regretted it at the time because I now know that conversation between mum and dad didn't go down too well. When Timmy's telling my mum, 'ah I've just spoken to Ben'.
'Everything's a little bit blurry at school. But don't worry, sweetheart, I've got it under control. I've told him not to worry about it', so well, How do you think that goes down with mum?
Mike: Yeah
Ben: my mum, world's biggest stress head has an amazing ability to turn little things into big things. And that's exactly what she did.
So dad's now under strict instruction from mum. He's had to leave work and she's giving him directions, what to do, where to be, go to school, pick up Ben, we're gonna meet you back here. I'm gonna tell you where to park, what to do, all this sort of stuff. And dad's like probably shouldn't have rung, anyway,
I don't know any of this has happened, [00:12:00] I'm at school.
Mike: Yep.
Ben: Minding my own business, not worrying about it like dad and I have agreed.
Mike: Just working out what's going on with the old peepers.
Ben: That's it.
Mike: I'm just gonna be fine. Dad's told me it's gonna be fine.
Ben: And it was only this tiny, little bit blurry, I could still see the diagram. It's not like I'd lost my eyesight or anything. It was like having a tiny little headache. So I'm just getting on with my day and going, ;no, I'm not even gonna pay it any attention;. And all of a sudden the PA system, the announcement comes over the entire school,
'Going Ben, please come to the office with your school bag'. I'm like, ' what is going on here?' I never got to leave school early. Parents were pretty strict like that.
Mike: You would've been wrapped.
Ben: Oh, I was pumped. I think I thought 'whoever was picking me up must have had something cool planned'. Or there must have been a reason that I was getting outta there
Mike: 'I'm going fishing!'
Ben: Hopefully!
So I get to the office and the old man's there, he's already signed me out and I'm saying, 'dad, what are we doing? Where are we going?'
By this point in time, mate, I'd completely forgotten about the conversation I'd had with him earlier.
Yeah.
Because it was just such a non-issue the way he dismissed it of oh don't worry about it. And he's [00:13:00] like 'Mate, apparently', according to your mother, I give very bad advice'.
All right, 'so she's in charge now get in the car, we've gotta go to hospital, we're gonna go get it checked out and you just just participate mate. Don't argue, don't push back. It's gonna be best for both of us if we just let mum do what he wants to do'.
Mike: So your dad's a tough nut, but we've just discovered who's really in charge here.
Ben: I think he thought, you know what, this is gonna be the easiest way through.
Mike: Smart man
Ben: Path of least resistance in this particular scenario because at the end of the day,
I'm the youngest boy and they wanna make sure things are okay, especially mum. Dad and I we're heading into town following mum's directions.
Pull up at the Eye and Ear Hospital in the middle of the city in Melbourne, and we are head into the emergency department. Mum rocks up. We get all these different tests done. Doctors sit us [00:14:00] down and they say, 'guys, we've discovered what's going on. It's nothing serious'. And dad's going 'see told you it was nothing serious'.
The doctor's saying, 'now, Ben, what it is, it's an inflammation of your optic nerve, which is just the cord that joins your, eye to your brain. So that's inflamed. It's bigger than it should be. What we're gonna do is put you on a course of steroids. We'll keep you in overnight.
We'll send you home in the morning. After a month, everything will be all good'.
Mike: Yeah easy fix.
Ben: Absolutely. And with some hidden benefits I thought ,my eyes lit up when I heard the word steroids. I'm picturing the end result going, 'this could be the best day of my entire life'.
Mike: Roid's at 16 geez.
Ben: Yeah. That's what dreams are made of, aren't they?
Mike: Bloody oath.
Yeah. You would've been thinking Arnie and Sylvester Stallone.
I was turning to mum going, 'Mum... Did you hear that?' and I'm going 'this is the best idea, you have ever had, we should have come to hospital and got on these roids ages ago'.
And she's shaking her head. She's all embarrassed. Dad's just [00:15:00] laughing, going typical and this doctor's shaking his head as well. Going 'mate, I can see by the look in your eyes, you've never heard of medical steroids. They will do nearly the complete opposite to what I can see you think they're gonna do, however, they will make you better within a month'.
Much to my frustration that they weren't gonna improve my physical appearance in the muscle and the tone sense. I got taken up to the top left of the hospital, put in the hospital ward into the bed. Convince mum and dad, don't worry about staying in overnight. I'll be fine, head home.
Ben: So just a precaution.
Mike: They just had to get you up there and what did they do? They had to give you some sort of like drip or something like that?
Ben: Yeah, they had to put the steroid drip in and they also had to just keep us in overnight to, to get those steroids pumping in, get the levels up, and then go home and you'll just have tablet steroids for the next month.
So that's what we did. Up there like I said, convince mum and dad, go home, see you in the morning, and the nurse comes in, says, 'Ben, been a really long day try [00:16:00] and get some rest. There will be some noises. We'll come and check on you every now and then, but just try and rest as much as you possibly can'. So she closed those sort of bluey green hospital curtains.
Yeah, I was in a room with 10 other beds.
Mike: Geez.
Ben: And yeah, busy ward and-
Mike: 10 blokes like you wouldn't have avoid, you wouldn't have got much sleep, would you? Geez
Ben: No, it wasn't it wasn't great, but I did actually manage to get a decent night's sleep after eventually winding down. I'll turn the TV off that hangs on that curtain rail at the end that TV that all those hospital beds have and flicked my mates and mum and dad
a couple of messages just to say, 'look, everything's all good here. I'll give the update in the morning. I'll touch base then'. Put my phone down, closed my eyes, tried to get some sleep, and the next morning when I woke up and I opened my eyes and looked around for all those things that had been there the day before they were gone, mate, to be honest, I'm looking to the bedside table beside me for my phone to check the time, and it was gone.
I'm looking towards the end of the bed as my sort of eyes are adjusting [00:17:00] and the TV's gone. Nothing that was there the night before was still there. And I'm going, what? The F has just happened? Like this is, I don't get this. I was in shock.
Mike: So it went from... do it was just pitch black??.
What did it look like?
Ben: Hard to remember. But I can describe what it's like now. Cause essentially, not that I knew it then but I'd just lost 98% of my sight overnight. So I'm going, I can't see the TV I can't see the bedside table. I can't see my hands when I'm holding 'em up in front of my face.
But I can see a little bit of movement as my are as my eyes are moving around. And looking around the room, I can pick up some movement and some, blurriness and some shapes, and some shadows, but nothing's clear. And it's very much like literally TV gone, colour gone, majority of things [00:18:00] gone.
There's just some shapes and shadows, but not really knowing exactly what they are or-
Mike: and you've gone to bed thinking, 'oh this is just a precaution, can't be serious because mum and dad have been able to go home and, they'll sort you out in the morning'. So you've got no, absolutely no idea that this is about to happen.
What was going through your head when you woke up?
Ben: I was honestly, looking back now, never once did it cross my mind when I woke up and couldn't see that it was permanent. I I thought maybe there's something going on with the lights in here. Maybe this is a side effect of the steroids.
Maybe this is something that will let me go back to bed for another hour or two and see if I wake up, then, surely it'll be gone. There was not one moment there that I thought this was permanent, especially when it was just me. In that bed surrounded by those curtains, by myself.
It's not like I could run it past someone and say, 'this is what I can now see. What do you think it is?' This [00:19:00] was just all internal dialogue going, 'nah, there's nothing to really worry about this. This is weird. This is different, I don't know'. I'm rubbing my eyes. I'm, putting my head into the pillow and try to adjust my eyes and, see if they're gonna work soon.
But they weren't and never came back.
Mike: Man, every time I hear that as I said I've heard Ben speak plenty of times. I can't even imagine what that would've been like from a sensory perspective. And I can totally understand when you just said that you didn't think it was permanent, maybe you've just got a bit... maybe it's a headache kicking in more, or the, drips had a adverse reaction and everything.
At what point, I'm they, assuming that they would've called your parents, they would've gone back in, but first and foremost, you would've had some sort of nurse come in, I guess you could say? And then what you're relaying that information to her. And then my guess is that all hell would've broken loose.
Ben: The funny part was it wasn't a nurse. The first person that came in [00:20:00] was one of the, one of the ladies that was coming around with the breakfast menu.
Mike: Yeah of course.
Ben: For me to select what I wanted for breakfast. Yeah. So she comes in with a laminated breakfast menu..
Passes it to me and goes. 'Hello, sir?' just just tell me what you'd like off the breakfast menu.
Now we're in the Eye and Ear Hospital. And we've got a laminated sheet of paper. So it's, not ideal in the first place. And I'm going I can't see the piece of paper. But by the time I'm trying to say this and even work out how to say that, 'I can't see it'.
She's gone, 'Just just tick the boxes, just tick the boxes that you' want. And I'll come back and collect it in a minute. And one of the blokes beside me in the bed beside me, he's watching and seeing my concerns and he's mate, everything all right? I said 'I don't really know what's happened, but I, can't see that the menu that the lady's just given me'.
I said [00:21:00] 'I would've been able to see it last night, but I can't see it now'.
And he's like 'Ah mate!. Yeah I know what that's like. Here I've got a magnifying glass here. Use this. You'll be right'. So that must have been what he was in there for, his sight, he used a magnifying glass to read.
He goes yeah, 'I've just ordered breakfast. I've just ordered this and this'. And he gave me his magnifying glass. He goes, 'oh, it's a real strong one. It's great. Just hold it up there. You'll be sweet'. And I've held that up and I've gone,
Mike: Can't see anything.
Ben: Can't see anything.
Mike: Shit and you had your phone there, did you straight away think, 'I've gotta come call my parents, what's what's happening here?'
Ben: I couldn't check the time, couldn't unlock it. I had a passcode on my phone, so I couldn't even get in into the phone, so I couldn't ring anyone.
And then eventually the lady came back and goes, 'oh, you haven't ordered anything for breakfast'. I said, 'oh I, can't really...', again, I'm trying to just put words to what's going on here without even really knowing how to say. I think my eyesight's ,gone I think my eyes aren't working. And I'm trying [00:22:00] to somehow explain that and put words to it and go, 'oh, can you tell me what's on it?'
Mike: And at any point did you start to panic?
Ben: Again there, wasn't a moment there that I thought, 'this is forever'. I just thought, this is the current situation right now. And I'm in hospital, I'm in the best place. They'll sort it out. There'll be some reason there'll be some. Other medication or who knows what I hadn't even thought that far ahead.
I was just in the present and trying to order breakie. I was hungry!
Mike: And fast forward so we, get to the point where perhaps people are starting to realize that something you know isn't quite right. So you've obviously got your parents in the picture now. And you've got the doctors that are probably, I'm assuming, pretty frantically trying to find out what's happening.
Talk us through the next steps.
Ben: Yeah, so doctors come in before my parents got there and they said, 'so how's everything feeling? All good. We'll, get you ready to go home'. And I said 'I don't think everything is all good. I can't see you'. And they're like, 'hang on, what? What do you mean you can't see me?'[00:23:00]
And then they bring in those classic charts that you, used to use or, I don't know, you probably still do use when you go for your car license or, something like that. And it's got all the letters in all the different sizes. So they bring one of those charts in.
And they're like, 'so which line of this chart can you read?' And I said, 'I can't see you and I can't see the chart'. So then they went and got another chart with bigger letters.
Mike: Yeah really.
Ben: They're like, 'can you see any of these letters?' And then they're bringing 'em closer and closer to me. And saying when, 'can you read these letters?'
And I'm like, 'no, I've got nothing.' And then they're saying, 'can you pick up the movement?' And they're literally waving a whole arm in front of my face and I'm going,' I can tell that there's something-
Mike: Your parents on the scene by this point?
Ben: No, no just them. And I'm saying 'I can tell that there's something movement moving there, but I, can't pick up the detail' and they were in shock.
And because of their reaction, I think that put me into a bit more of a [00:24:00] level of shock because they seemed a lot more concerned. And then mum and dad rocked up not long after they said, I think they tried to just calm the situation down saying, ''no, that's okay. Sometimes these things happen.
I'm like, 'oh do they really?' and they're like 'let's just do a lot more tests and we'll, try and figure out what's going on because this is a little bit outta the ordinary. We weren't expecting it, but we will uncover what's going on. It might, may just take us a little while and it may look like we might keep you in for observation over the next few days'.
And again, they played things down pretty calm, pretty cool. 'We'll just do some tests and we'll figure out what's going on and then we can treat it accordingly'. And that was always the, dialogue, the conversation. 'Once we figure out what's going on, yeah, we'll be able to treat it accordingly'.
Mike: So it sounded like there was some hope themes there always.
It was always like, 'oh no, this will be all right'.
Ben: Yeah.
Mike: 'This is just a small setback'. When did you realize, mate?
Ben: So it was probably... probably a week in when I was doing some, tests [00:25:00] and whatnot that one of the doctors said. 'Now, one thing that we're thinking it maybe, or it could be is, this condition called Leber hereditary optic neuropathy.
There's a few different variations the way in which your optic nerves are showing up through this particular test is presenting similar to some photos that we've got of this very, rare genetic condition'. And that was just one conversation amongst hundreds and hundreds of conversations that I'm having throughout this couple of week period.
'But in order to know it could be that, it could be a number of other things. We're gonna do some genetic testing, we'll send them off, it'll take a week to get results,' yada, yada, yada. Week later, we get the phone call. I've eventually been able to go home and they're just saying, we're literally just playing the waiting game for results.
And we get the phone call to come back in. We head back in, get sat down, and the doctor delivers the news that it's not what they originally diagnosed it as. It's a rare genetic syndrome. [00:26:00] And those words came out called Leber's, hereditary optic neuropathy. And he said, 'Ben, I'm sorry to say mate, but this is incurable.
It can't be fixed. You'll be blind for life'. So that was that was that mate, that was the moment they were the words that turned my world upside down. Crushed those childhood hopes and dreams of being a helicopter pilot. I don't think that would be a wise idea.
Mike: Absolutely not. did
that, But that's such a, powerful thing to hear.
There must have been a billion thoughts running through your head, and obviously it's went straight to your hopes and dreams and everything like that. How did your parents handle that?
Ben: They, burst into tears to be completely honest. And I talked at the start about old man being that tough character, it was the first time my entire life that I'd ever heard my dad cry. And to the point that I don't really talk about [00:27:00] this, I haven't really talked about this, when dad was crying, I thought he was joking, like in a really weird way
Mike: You couldn't see it
Ben: Because I was In shock. Not a hundred percent there with it all over the place.
Probably looking back now, and I'm going, I'm saying to mum, 'is he for real?', Mum's going 'yes,'
It would've just almost been an out body experience.
And I'm going, 'come on dad. It's not that big of a deal, come on mum I've just lost my eyesight. Let's get on with it'. I'm, thinking in that moment that, Fuck if dad's crying.
I've gotta pick this shit back up. Dad doesn't cry, if dad's crying, this isn't good, but we need to get on with this and, I'm trying to go, 'come on guys not a big deal.' And I thought if I cry, they're gonna see me crying. That's gonna make them cry more.
Mike: So you're just trying to support them in that moment
Ben: And trying to put on this sort of brave face.
Without knowing that was necessarily what I was doing. [00:28:00] If I seem like I'm okay with it, hopefully that will help them seem that everything's gonna be okay. Even though I didn't know whether it was going to be or not, or what the impact was gonna be, like, what it was gonna be like to live not being able to see, none of that had computed yet, but I just wanted to, I just felt awkward because dad was crying. That tough guy in my life was crying and that was weird. So I was like, the whatever I can do to stop this stereotypical tough guy crying, I'll do. That literally was my way of thinking.
Mike: Yeah. And, so you've got this situation where your life has changed forever. You have, I'm assuming you've not had experience or met anyone that's been visually impaired or lost their eyesight altogether. What's the roadmap outta there mate? What are the steps to actually I'm assuming 16 years old, what do you do?
How do you go back to school mate? Like, how what, the hell are you gonna do there? What are you gonna go back to school? What are you gonna study? How are you gonna study?
Then you start thinking about what braille and stuff like that. Is that something [00:29:00] that you have to do? What was the actual steps outta that?
Ben: I had no idea. No, I had absolutely no idea what the steps were other than let's get back to normal. Yeah I think that was the thing that-
Mike: Part of the denial and part of the shock sort of thing that's somethings kicking?
Ben: Yeah. And everyone around me was going, 'let's just get back being back to normal life because that's gonna help the most'.
Let's get things back to normal. So like mum and dad, my mates, my basketball coach, were saying, 'oh yeah, Ben can still train for basketball.' And he, can still come along. I'm like, 'How am I gonna train on the basketball court when there's this ball flying around that I can't see? And when there's people running around that I can't see' and it was just get back to normal life and get back to the way things used to be.
Even though everything was so different and I was back at school, I think everyone wanted me to get back to school from a social point of view, even though it was very much, we don't know how Ben's gonna learn yet. Obviously he's not gonna be able to see what is on the board, read the textbooks, write the notes, do anything like [00:30:00] that.
But let's just from a social point of view, get him around his mates because the last thing we need is Ben waiting in his bedroom until we get everything sorted. So let's sort things along the way
Mike: and would've been a lot for your mates to take in as well?
Ben: Oh, a hundred percent. That was one thing that took me a while, to be honest to recognize was my parents had never had a child obviously thatat was blind. My sister had never been a sister to a brother that was blind. My mates had never been mates to a mate that was blind.
Mike: Your teachers had never taught, maybe?
Ben: No, a hundred percent teachers had never taught someone. And they said that, my mates said that, but they weren't necessarily saying it until I recognized that it wasn't just me going through this, was affecting everybody around me.
And as much as I was uncertain about everything, so was everyone else. There was treading on eggshells and mate It was [00:31:00] a, daily battle, this rollercoaster ride of adjusting and adapting to life now. And it was actually some of the smallest things that were the most frustrating that would give you the shits.
Mike: Like what?
Ben: I clearly remember coming home from the hospital and knowing my way around the house because it's where I lived. And I was able to navigate with my limited, very limited shapes and shadows to the cupboard that we kept the cups. So grabbed a cup cause I was thirsty.
Went to the kitchen sink, felt the kitchen sink, felt the tap, put the cup under the tap. That wasn't too bad. Turned the tap on. And I hear, (mimicking cup filling up) you know how that sort of the noise changes a little bit and then all of a sudden the water's going over the top of the cup onto my hand. I'm getting a wet hand.
I'm going 'that's full. But that's annoying. How do I know when to stop?' And that's one tiny little example of this mundane daily task [00:32:00] that we all do as people that we don't think about. We don't sit there and go, 'okay, now when I need a pourer cup of water, what I'm gonna do is I'm gonna follow my fingers around'-
Mike: It's just second nature.
Ben: Yeah you just do it without thinking.
Absolutely and everything I did without thinking all of a sudden. It was sinking in that I now had to think about all of these things. And it was those little things... I knew that getting around independently was gonna be this huge challenge.
But I didn't really count on all of these tiny, little daily tasks that we do without thinking, adding up to cause so much sort of frustration.
Mike: 16 years old carrying something as heavy as that on your shoulders. Your mental health emotionally what were you thinking, where were you at?
Ben: Yeah. Not great. I think the first, few months was denial. And [00:33:00] denial to the point that because for 16 years of my life, 365 days a year, every day, I'd been able to wake up, open my eyes and just see the world. So I didn't sink in straight away even after that diagnosis, couple of weeks after being in hospital for the first time.
Even after that I'm waking up every morning and opening my eyes and going, 'fuck, that's right'. I'm expecting to be able to see and I can't.
And that was this pattern over and over again. Like surely one day this, will all just go away. Like I'm, a pretty realist, like that I'm pretty black and white.
But at the same time, I couldn't help that fact of waking up and going, 'not today'. It just wasn't sinking in straight away because it wasn't natural. And in terms of my mental health, I didn't realize that what I did in that hospital room by putting on that brave face when mum, but more specifically dad [00:34:00] broke down, I created a habit and I created a pattern that the best way for me, And everyone else to get through this because everyone else was upset, they were all worried about me. They were all asking, 'is everything okay? How are you coping today? Is everything...' the best way that I figured out to cope with it was just put on that brave face.
Mike: Yeah. Bottle it up
Ben: 'and just go, no, I'm all good. That's sweet. Yeah, it's no big deal. Don't worry about it'. The amount of times that I used the phrase 'no big deal'.
Mike: Yeah. Do you think you believed it or do you think it's something that you knew that you were bullshitting yourself and everybody else?' Do you reckon you believed it or was it is it kinda like you needed to for your own mental health and to keep yourself up and for not help falling in a heap, you needed to continue to tell that lie?
Ben: I think it was a bandaid approach that I was wanting and trying to believe. But I knew deep down that I didn't believe it.
Mike: I want to know when was the moment that changed Ben? Like when did you accept it? Like when did you sit there and go 'right, that this is [00:35:00] something I can't change?' Cause obviously I've been through a different situation but a similar situarion.
There's that moment where it all hits home and you go now I've gotta make a decision. This is the day. When was that moment that you actually had where you just said,' okay, I'm blind'.
Ben: There was a couple of moments there was a couple of moments and there was one
that I realized that I was blind. And then there was another moment that had just kept going down that same path that I was talking about of putting on that brave face. So first moment was one thing I absolutely hate more than most things in the entire world Poles. Fucking hate poles. Like absolutely hate poles.
I don't discriminate poles don't discriminate against me. Big poles, short poles, tall poles, skinny poles, wide poles. Like all the poles, I absolutely hate them.
Because I end up running into 'em. They're not easy for a cane to pick up. And I was also in denial, not really using a cane because I was [00:36:00] embarrassed.
I didn't want people to see me using a white cane, so I ran into a shitload of poles. And pole number one. I don't like admitting how many poles I'm up to now, I think I've stopped counting. It was easier to stop counting. But poll number one was very memorable for all of the wrong reasons and I was walking into school still in denial.
A few months after losing my eyesight and outside the main office in the main thoroughfare that every single kid at my school walked through. I have ran head first into this pole on this main thoroughfare, and it has cracked me perfectly eyebrow cheek, lip, split it all open, blood pouring down onto my school uniform.
I've dropped to the bottom of the pole. And it was then and there for the first time since I was diagnosed that I've gone, this is real. This is real, I need to accept this, but I'm not happy about it. So I think that was the first moment.
Mike: Second moment?
Ben: Second moment [00:37:00] was, yes, I had accepted it was real, but I wasn't bloody happy about it and I continued, even at the bottom of that pole, people come rushing up and going, 'are you okay? You okay? '
'Yeah, I'm fine. Leave me alone, yep all good'
Mike: And get off me.
Ben: Yeah, a hundred percent. And I continued that probably even stronger, even harder from that moment.
I was like, 'There's gonna be things that happen like this'.
Mike: Did you get pretty angry?
Ben: But I need to push people. Oh a hundred percent. A hundred percent. And I cracked it, pushed people away. Continued to push people away, but also put on that brave face, like the pushing people away, ebbed and flowed.
But also I didn't want to continue to push people away because I wanted to seem like everything was normal. It wasn't until couple of years I'd continued this pattern, didn't realize how much shit I was just bottling up and this brave face of always saying to people, 'no, I'm sweet. It's no big deal. Look at me, I'm fine. It's all good, yeah. Nothing worries me'. [00:38:00] It was just those standard sayings to get people off my back. But it was interesting how people just accept that as well. Because people started to realize every time they ask Ben, 'how is he?', 'Hey, he's sweet'.
Mike: And they've probably walked away thinking, 'God, he's amazing, isn't he? He's amazing the way he's doing this stuff'
Ben: I dunno what they were thinking, but maybe, yeah.
Mike: Yeah, because you're fine. He seems to be dealing with it fine, but deep down, not the case.
Ben: But the mental health mate really got challenged over two years after I lost my eyesight start of year 12.
Was able to get back to doing some of the things that I enjoyed before losing my eyesight. One of those was water skiing. Went water skiing with with the family up to Lake Eldon and went out to do a left hand turn. This was the weekend before year 12 was about to start. And the ski has slipped out from underneath me.
Had nothing to do with not being able to see front of the skiis. Got caught in the water, spun around, broken every bone in my ankle. Not that I knew that at the time, but I knew it bloody hurt. [00:39:00] And I ended up heading back to getting in the boat pulling the foot outta the boot was the most painful thing I've ever been through in my entire life.
I think all of Lake Eldon and the surrounding 50 kilometers heard that scream. And then the, painful boat ride back for an hour to the boat ramp over every wave. Two hour car trip straight to the hospital. And then we get into hospital and eventually do some surgery after a week waiting for the inflammation to go down and whatnot.
And we got outta surgery and had the moon boot on, doctors come in before they were letting me go home, they said now, 'Most people that break their ankle will go on crutches. But because you can't go on crutches because you use a cane, we're gonna put you in a wheelchair. Now, wheelchair's still not ideal because you can't use your cane.
Your broken ankle's, the thing that's gonna stick out furthest from this wheelchair. So we don't actually [00:40:00] want you to go anywhere either. We just want you to hang at home because that's probably the safest place for you. You'll be able to do some of your schoolwork from there and whatever. And mum's working with teachers to work that sort of stuff out and
I was like, yep, cool 'if that's what I have to do, that's what I have to do'. Again, didn't think too much about it. And that's how I spent pretty much the whole first term of year 12. I spent that at home in a wheelchair buy myself for a lot of that time, and I spent my 18th birthday the same way and continued to put on that brave face.
Even though you don't have a great day when you're doing that day in, day out and you spend so much time inside your head. And it wasn't until a few days later that my old man came in from, work same as he did every day same as mum did. They popped their head in the bedroom.
I was up on the bed and he said, 'Hey mate, how was your [00:41:00] day?', 'Yeah, good. How's yours?' 'All good'. And we talked about the footy and work and, how his day was and yeah on for the weekend? He goes yeah, 'no just, wanna make sure like everything all good'. And I said, 'yeah, no dad, you know things don't worry me. I'm fine. This will be over before you know it'.
Mike: And same tune.
Ben: Yeah. Same tune, brave face, bottle it up. And just before he left, he looked back and he said, 'Mate you sure you're all good?' And I don't know why he asked, I don't know what clicked inside him or what clicked inside me. But I burst into tears for the first time since losing my eye sight.
Yeah, and it all came out at once, like this bottle, was that full of two years of buildup, emotion, frustration, anger, hurt, resentment. Everything was in this bottle and it has just come pouring out, and I'm going, 'dad, this is shit. This sucks. This is fucked. I hate this. I wish I [00:42:00] wasn't blind I hate every single part of this'. And this is just through tears-
Mike: How did he respond?
Ben: I think he was in shock Because to him I was coping. All everyone saw was Ben coping. Ben coped really well.
Mike: Yep.
Ben: And he just came and sat and put, his arm down on me and around me, and he just said, 'mate I can't imagine'.
He goes 'I, cannot imagine what you go through every single day'.
Mike: How'd you feel?
Ben: Light in a really weird way as angry, as frustrated, as hurt, as sad, as upset as I was.
I actually felt light for the first time since I was diagnosed because everything I was bottling up, I didn't realize how much it was actually weighing me down.
And how, much effort and energy it took to continually put on a brave face and, try and get through shit by myself.
Mike: And that moment taught you a really valuable lesson. Did you make a decision that day is not let yourself get to [00:43:00] that point again?
Ben: That mate and I think I recognized from that day the value of speaking up.
And how important it is to let other people in and it's not a sign of weakness because of how good it felt for somebody else to understand it. And from there I was able to talk to mates about it, to mum, about it, to my sister, about it. And not the same way. Not in that angry, frustrated through tears, but actually talk about some of the things that were really getting to me.
Some of the things that really frustrate me on a daily basis or those moments. And then from then on, I didn't have to let two years of bottled up emotion and frustration hurt and anger out. I could actually just talk about that day.
Mike: Popping off a bit of steam, mate.
Ben: Yeah, exactly.
Mike: Like a whale coming to the surface.
Ben: A hundred percent right.
Mike: Absolutely. So you learned that valuable skill and you've taken that with you and now knowing you're you're a very mature for your age still a pretty young pup, but you you got a family now, you've learned to [00:44:00] use some of those really valuable lessons and that one in particular with your dad to cope and and to get through life and to achieve, not just to, cope, I would probably used a bad word, but not just to cope, but to thrive.
Talk us through that. Let us know a little bit about what do you do on a regular basis to manage your mental health a and to get through challenges that not everybody out in life has to deal with on a daily basis. What do you do?
Ben: It's a tough one because I'll be completely honest and go, it is one thing that as life changes, I'm coming up against new challenges.
And just when I thought that I had it all figured out, living by myself, not in a relationship at 19 years old, I was going right.. I've got my life at the moment. Worked out and things are pretty seamless as much as there's always challenges and frustrations. And then all of a sudden there was a long distance relationship thrown [00:45:00] in there.
Mike: Bang.
Ben: And that came with a whole nother set of challenges. And when I say challenges, physically from the point of view that all of these things that I wished I could do, wanted to be able to do, couldn't do because of not being able to see, that then impacted my mental health. And then Throw the next spanner in the works of having a little girl and going, this little girl deserves a dad that can see.
Mike: All that all that doubt about self-worth and those sorts of things. 'Oh, huge'. And, does a word burden pop up?
Ben: Burden pops up I think also burden, but then the, other side, I'm also very conscious and always have been of what I feel and believe that the people around me deserve.
And yeah, I suppose it is connected very closely with burden, but say for my daughter who's 18 months old she's not looking at, dad going, 'oh, he's a burden'. But I go I wish I could do so much more with her [00:46:00] than I can and from a mental health point of view, what do I do to try and manage that?
Because That's the shit that I'm dealing with every day and trying to juggle and, manage so that it's not getting me down. And there's moments that it does, absolutely. There's days that it does. There's days that I go, I wish I could see. That's not all the time. But that is definitely still some of the time.
And it changes. It goes up and down. But in terms of what I do, one of the things that I absolutely love, my two dogs, two kelpies and the good thing with me and taking the dogs for a walk is it's not like I can get out there and chuck a podcast in or some music on because I can't see where he is.
So I need to be, listening. I've got a couple of metal discs on his collar so that they jingle and then obviously just very much in tune to that. So I'm quite at one with nature, as weird as that sounds. Which I absolutely love, and whether it's for 15 minutes, half an hour or an hour. Try to do that [00:47:00] hour as much as I can of a morning and-
Mike: non-negotiable for ya.
Ben: The good thing is, doesn't matter whether it's daytime or night time can't tell the difference anyway, daylight savings or not I take the dog for a walk and that I know that if I stop doing that or get out of that habit even for three or four days or a week, my mental health goes down.
Mike: Goes down.
Ben: So that is one thing I do to refill my tank mate.
Mike: And on top of that, I remember a little while back thinking you're an absolute lunatic. I would've thought because you go bike riding around near where you live get on the mountain bike and go for a bit of a ride.
Ben: Doesn't always doesn't always end well.
Mike: Yeah. And then I remember you're sending a, this crazy story about, tell us about you... You were going for a bike ride and you sent a photograph after a bike ride to your wife. Yeah you did. Or you're just going for a walk? You're out there walking around and...
Ben: ah yeah! Sorry. Oh, see the problem is mate, I've got that many scars from running into [00:48:00] shit falling off shit. Hard to remember. That's it. So the bike, I had one used to live near a pony club. And I was riding through this pony club that I knew from when I could see, like still, live quite locally to where I grew up.
And I'm riding through this area thinking that I remember where all these horse jumps are. And I've, just come across this one that wasn't a horse jump that was built up outta the ground. That was the horses had to jump over this huge dugin meter deep ditch. Yeah. So I'm just riding along going, 'oh yeah, I think I remember this this is all good'. And then I've just gone nice and slow. Straight into this ditch that was meant to be a horse jump.
I did not jump the horse jump.
Yeah, My face didn't jump. The horse jump and took a fair bit of bark off the skin. So I've walked back into the house that day with a hat on and a hoodie on trying to hide all this ,scar all this skin and bark that I've taken off the head.
So that was funny and eventually when I was [00:49:00] having a shower, or going to bed like three or four hours later, Amy was like, 'what the hell have you done?' And I was like, 'what?' She's like, 'what has happened?' And same thing happened when I was taking the dog for a walk, slipped off the side of the track and ended up impaling my leg on a star picket.
Mike: Yeah, I still remember the photo. It's it's, a gruesome it looks like it's -
Ben: I never saw it
Mike: Four centimeters deep. And you just carried on, didn't you? Carried on walking and,
Ben: The the problem was Amy was in Europe.
Mike: Yeah! I remember you had to send a photo just to say, 'Hey, is there anything wrong with my leg?' cause you could probably feel there was something, going on.
Ben: 'Will this be right in the morning?'
15 stitches later... yeah.
Mike: And for anyone thinking how hard that might be, just like simply going for a walk just. Using mind memory to get around try riding a bike.
Ben: No, don't try riding a bike if you're blind.
Mike: But for, anyone wondering how hard that is. I, We were on a recent trip, I remember walking into a school and I closed my eyes just to see what that would like for Ben. And I just walk around flinching the whole time. And I don't know what that would even be like.
But your [00:50:00] ability to get around now many, years later is just incredible. Watching you navigate your ability to remember things and to go out there and, like you said, Ride along without being able to see with your dogs or, to even just to walk along is pretty incredible.
But obviously pretty important for your mental health as you said.
Ben: Yeah, absolutely, mate. Time, definitely make doesn't make things go away. But it definitely does help things become more normal. And things do get easier with time. So yeah, regaining some of that independence, that confidence, and also that stupidity just to go, you know what 'Let's give bike riding a crack'.
And probably the one other thing just to touch on with refilling my tank, I think the walking the dog thing is really important from a regularity and consistency point of view, but also love, post broken ankle, post recovery still getting out with the family and water skiing, being behind that boat, holding on to that handle out there.
Because as long as I'm holding onto that handle, [00:51:00] I'll be following the boat. That's how the whole concept works. And that is probably one of the major times in my life when I'm behind a boat that I don't think about not being able to see. And, I don't feel like it affects me.
I don't feel like it impacts me, and that's when all of that stuff goes away. So that's the other thing that's awesome for my mental health, but I need to make sure I'm doing both. I can't just hang out for the next time I go water skiing because over winter and whatnot, that could be in six months time, that's too long to wait to not be doing something in between to refill that tank.
Mike: I love what you said before about being one with nature. Like it's corny as that sounds or whatever, but just getting out there. And doing that in on a regular basis. And, if you don't it can have some, impact on your mental health
Ben: Yeah or that Yeah. awesome saying that we reel off from time to time. If you're feeling blue touch green.
Mike: Yeah. Love that.
Ben: That's a great one.
Mike: Absolutely. Yeah, a hundred percent. Benny, love to throw some quickfire questions at you, as we always do with our guests, and you are no different. [00:52:00] So today I'd love to throw a few things at you. So here we go.
Ben: I'm ready.
Mike: You ready to go?
Ben: Yep.
Mike: Alright, so Schnitty your steak for you?
Ben: Schitty if I can turn it into a Parma.
Okay good one like it. And poddy, book or tunes. That's a tough one, isn't it?
Mike: Nah, not a tough one for me mate. Music tunes a hundred percent country music addict and-
Favorite artist?
Ben: Oh mate, there is many Morgan Wallen, Hardy Eric Church. Number of them, absolutely love them. But I think the thing for me is when you can't see, music to me is my landscape. So many people get pissed off at me because I literally walk around with either an AirPod or my phone playing music the whole time.
And the reason I love country music tells a story that creates that landscape for me that I miss out on. Not being able to see.
Mike: Yeah, absolutely love it. Where do you go to switch off, mate?
Ben: Where do I go to switch off? I would say to the river, to the river by the water Camping.
Mike: Worst advice you've ever been [00:53:00] given about your mental health?
Ben: Worst advice I've ever been given. I probably gave it to myself, to be honest, 'No big deal.' I gave it to everyone else.
Mike: You mentioned, you said that was your that was favourite go to?
Ben: I'd be a millionaire if I had a dollar for every time I said no big deal to someone.
So I don't know if that counts as the correct answer, but I would say that I gave myself the worst advice I've ever been given.
Mike: Yeah, best advice?
Ben: Best advice I would say would be, To not bottle it up and to let someone in. I think that piece of advice, I think we touched on it in, an earlier episode, which is that problem shared is a problem halved
is so true Yeah. and just being able to, let somebody in is so valuable. I didn't realize the value until I did it. If I have one regret in my entire life, it's not speaking up sooner.
Mike: Yeah. Love that. Benny we're [00:54:00] great mates. I love listening to you tell your story.
I'm honest when I say that watching you grow about life in spite of a circumstance that you had no control over is always inspiring. I know that you hate that word but it is inspiring. You said before something that sticks out to me you were worried about what it's gonna be like to be a dad and whether you can be enough.
And I, certainly know that you are more than capable. And and someone that I think is, such a magnificent father, a magnificent husband to Amy. And you just go about living your life with, such pride and putting emphasis on being resilient given all that you've been through I think it's fantastic, mate.
And it's a pleasure to be your mate. I'd love to, to cap this podcast off with asking you, knowing what you've been through thinking about how you used to view what it means to be tough in your formative years when you're a young fella, I'd [00:55:00] love to hear what your definition of being tough is now.
Ben: My definition mate, of being tough now knowing what I know, knowing what I've learned the hard way is having the awareness to proactively and regularly tip that bottle out before it gets too full.
Mike: Thanks for listening today and if it struck a chord don't forget life's tough for all of us.
So if you're struggling talk to your mate and if you're still struggling, please call Lifeline 13 11 14.
