After he was hit in the head with a plank of wood Gary Kearney was left with two subdural hematomas and a subarachnoid hemorrhage amongst other injuries. Today he is a disability advocate in Ireland.
03:22 Drugged And Mugged
12:33 Reconciling With The Present
18:43 Dealing With Anger
26:17 Recovery During Lockdown
33:41 Like No Other
42:06 Purple Lights 19
58:10 Viva Vox Ireland
1:01:48 Accessibility For Disability
1:08:15 The Reminder
Oh, sweet God, it took me about eight years to be fully happy with who I am now. Because you go through the original shock, then you go through the bargaining process, where I’m okay if I can get this back, or I’m okay if I can get that back, or I’m okay if I only have this.
And you go through the whole process and then you go through the angry mode and the morbidly depressed mode. Morbidly depressed mode can stay there quite a lot of time that’s a horrible experience. I thankfully didn’t last too long in that one. And then you get the angry mode where you hate everybody. And that can come and go well on a regular basis depending on how you’re feeling.
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Hello, and welcome to recovery after stroke, a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future. I’m your host three times stroke survivor Bill Gasiamis.
After my own life was turned upside down and I went from being an active father to being stuck in hospital. I knew if I wanted to get back to the life I loved before My recovery was up to me. After years of researching and discovering, I learned how to heal my brain and build a healthier and happier life than I ever dreamed possible.
And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve. If you enjoy this episode of want more resources, accessible training and hands-on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers.
This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence, head to recoveryafterstroke.com to find out more after this podcast but for now, let’s dive right into today’s episode.
Introduction – Gary Kearney
This is Episode 159. And my guest today is Gary Kearney. Gary was assaulted in his early 40s and the attack left him with multiple head injuries and lifelong deficits these days. Gary is a disability advocate and activist presenter and producer of Viva Vox the disability show with a difference at Dublin City FM, and is the founder of the hashtag Purple Lights 19 Gary Kearney Welcome to the podcast.
My absolute pleasure. And I mean that, it’s my first podcast, I’ve done radio, I’ve done TV, I’ve done press but never did a podcast. So this is my first, you have my basic first time ever.
I feel honored and blessed. Thank you so much mate. We have tried to connect a couple of times before but we haven’t made it happen now we have this time, which is good. What I want to know is what happened to you? Tell me a little bit about it.
Drugged And Mugged
Well, I was 45 years old. I was on holidays. I was on leave from work. I finished work on the Friday and I had a week off I was going fishing. I went in to see a friend of mine. She was okay and we went to have a couple of pints nothing mad like if I was blind drunk. I would’ve said I was blind drunk and I’d walk in front of a car or fell over but unfortunately that wasn’t the story. I was roofied, and then I was mugged for my wallet.
Your roofied and mugged?
Yeah. Unfortunately, as you can see not exactly a leprechaun Irish I’m the joint Irish. And I’m six foot two so like they were robbing the man even out to my face I was able to recover and I got away.
So I have a plan. My last conscious thought was it’s half nine I walk home 25 past nine coz I was at the park right? So I’ll walk home, I’ll get a pizza and then I’ll go home. So this was about half 11 of the stage I’ve lost two hours somewhere in between.
And I walked in to the pizza place and I didn’t pack the our robot toy. I ordered the take-home pizza. He said to me afterwards you just look likely you’re long drunk. Wich sometimes a possibility I could be but I wasn’t this time. Started to travel, blood everywhere and collapsed.
Doctor was there because the nearest hospital is only four minutes away. He was in collecting pizzas for the staff. So he dragged me outside screamed out get this man an ambulance This is not doing he’s seriously in trouble.
I had an ambulance in four minutes and I was in the hospital for the night. I had oxigen within five minutes, which I think is personally I think one of the big reasons why I recovered the way I recovered.
I had two subdural hematomas, and a subarachnoid hemorrhage, multiple factures of the base of my skull which is the hardest bone in your buddy to break it’s so strong, but mine was shattered, and nerve damage to the left of my face causing profound deafness on my left side.
Punctured eardrum and damage to my right 50% deaf in my left ear right ear. So I have hearing aid in my right ear. And people come and shout in my left ear and I think why are you doing that? That doesn’t work at all, it’s only good for headphones, sun glasses and things like that. It’s not good. You know? I can’t hear.
So that was five and a half years ago. And I got palliative care. Because there was no point in sending me to a neurological specialist hospital. Because there was no point I was going to die.
Or if I did survive I was going to be in a wheelchair in a nursing home. I didn’t as you can see, I woke up the next day I think or maybe day after, with a hell of a bad headache.
And only people that have had brain injuries know what a brain injury headache is about? It’s a whole different level of headache. And I’m seeing double, I couldn’t hear properly, and I thought okay, I’m breathing that’s a good start. Okay yeah, I can move everything. That’s okay. Let’s see what I can’t let’s just keep focused on that. And that was the start of the journey. Here I am five and a half years later. And I’m proud of myself to be honest. I am very proud of myself.
Yeah. So your bleeds in the brain were caused due to the mugging was it assault?
Yeah, I was assaulted, the neurosurgeon, my consultant said to me, they must’ve hit you with a wooden bat they must’ve hit you with a piece of wood. I said why is that? Did you find sprinters? So I think what’s happened he said no, he said, because there were some given reward. If it had to be in metal, the amount of times that you were struck, you were dead.
You were just lucky they have wood because there’s a bit of flexibility in wood it doesn’t give it puts all the pressure through to steel object. So it was enough of a cushion from it being wood rather than iron or steel to kill me. So I got with my dad, you know, you’re still looking for splinters back there and I’m gonna start to crack.
As I’ve said I have a dark sense of humor and I do have a tendency to laugh in the face of let’s be honest danger. You know, it’s you wake up you haven’t got a clue where you are, you haven’t got a clue what’s going on you know everything hurts.
So you freak out, I do. But then I started laughing like how the hell did I end up here? What the hell happened to me? And go from there? Because they’re normally true. So I get worried about it, and upset about it’s not gonna make it any better.
Yeah, no, absolutely. What did I steal Gary?
They just gave you a beating?
No they were gonna steal my watch, they were gonna steal my wallet because there was about 800 euro in it and my credit card and all the glass and plastic and all the rest and you know, anything they could.
Unfortunately, even though I was out of my face, I’m a big lad. And I know how to mix it up when I have to, and I was a lot younger than I am now. But I mean, I have a lovely shiner which I’m trying to hide politely because I walked into a punch.
But I’m a big fella, I know how to defend myself. And the other thing was somebody said to me, you were drunk and they whacked you on the head I said, yeah, but the survival instinct of you don’t understand the survival instinct until you actually needed it. Like you see, you hear stories and you see videos a woman claim lifting cars off her children and that’s a basic instinct. That’s the most basic instinct you’ve got is to say keep yourself alive. So I fought like hell and I fought them off.
Since you mentioned it, did you walked into a punch yesterday?
Yes I did.
Does trouble follow you around? Or do you look for trouble?
No trouble follows me around. And I come from a very lucky family. And people say the opposite to us. We’re very unlucky, my brother, one of my brothers had just passed away, he broke his neck in a car crash.
My other brother broke is back in the car crash, I’ve been attacked, and you know, if it’s gonna happen, it’s going to happen. But our attitude is the opposite our attitude. Well, you know, okay, we’ve been dealt a tough one, let’s get on with it.
And we laugh, like, the slagging, I get over my brain injuries the tease I get over my brain injuries were rough from my own family, but then I tease them about their stuff. So like, it’s, I found myself that the worst thing for me is, like, I’m invisible, right, I’m six foot two, I’m a big fella, big rowdy pony guy, and a big loud voice, you know like there’s nothing wrong with him.
And I’ll be talking to somebody like you you know, we don’t look disabled, you know, invisible type. And I say yeah I have multiple disabilities, I’ve brain injuries, I’m deaf, I have this and that.
And you can see their eyes change, you can see the look in their face. And they stand a little further back, and they start talking slowly, and opening their mouth, closing it. And I’m thinking I shouldn’t have said that, let them think I’m an idiot rather than, you know, they have to do this.
So we don’t my family you get empathy, you get support but you don’t get sorrow, and you get sympathy for the mess you’re in. But that’s it. And it’s let’s get on and get it fixed. And the attitude was always that attitude was coming from my parents from probably from my grandparents, it’s you’ve got dealt with cards, and now deal with it.
And that’s been my attitude from the very first, not saying ofcourse that it doesn’t go belly up a lot of times, you know, it goes belly up all the time. And that’s the joy of being brain injured is that. Never sure quite sure what it’s, as I say about brain injury. It’s always surprising. It’s never boring. Because you never know what the hell’s gonna happen next, because you can’t remember what happened. So something happens, it might’ve happened before but I can’t remember it. So it’s, you know, I never get bored.
Reconciling With The Present
Did you ever do the whole compare yourself to before your injury and after your injury and find it hard to reconcile?
I found it hard to reconcile.
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery. head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Oh sweet God. It took me about eight years to be fully happy with who I am now. Because you go through the original shock, then you go through the bargaining process. Where I’m okay if I can get this back, or I’m okay if I can get that back, or I’m okay if I only have this.
And you go through the whole process and then you go through the angry mode and the morbidly depressed mode. Morbidly depressed mode can stay there quite a lot of time that’s a horrible stretch. I thankfully didn’t last too long in that one. And then you get the angry mode where you hate everybody, and that can come and go well on a regular basis depending on how you’re feeling.
And who it is.
And who it is yes. And how sensitive you were at that particular day. Because it’s got a Why? In it or something there’s no reason rhyme or reason why we have to be in particularly good or bad form. It’s just it’s sunny. I’m in bad form. It’s it’s raining. I’m in good form. It’s raining I’m in bad form.
There’s no no logic in it, but there is an arrowhead. Because we’ve seen what’s wrong and we’re upset about it. And the other thing during the course is, you’re trying so hard to be who you used to be, but you can’t be who you used to be. It’s like, a friend of mine said to me one day when I was trying to do what I did when I was 25.
And he says Gary, you’re 35 years old. You’re not 25 anymore. You cannot do those things, you know, you’re not the same person. So why am I trying to be the person I used to be? So I stopped. I didn’t think there was any point because one, I can’t do it, amd two I like who I am now. I created this person. How many people can say they got a second chance?
I mean, I got a chance to start with this person, and be who I am. And I’m happier within myself as a passion now than I was before my brain injuries because I had to sit down and look at my life and decide where I was going, what I was doing, how I was going to do it.
Fall flat on my face repeatedly. Repeat, rinse, repeat. But slowly, but surely. And it took eight years. I got through to trying to be who I was for me. I got through. And this is a subliminal one. This is a nasty one because you don’t see it. I stopped trying to be who I was for other people.
Because I look to the same, you don’t look disabled. Yeah, you don’t look stupid but looks deceive. I did say it to my boss. So I mean, I wasn’t supposed to, no wonder wasn’t working there much later. And, you’re trying so hard to be what everybody wants you to be it’s like the big swan on the water who gracefully going upstream.
But that’s like us on top of water, where we look like we’re dealing with everything above ground but then our legs are going like, inside our head, we’re trying to balance the 101 million things we’re trying to balance the function and an able world which wants us to be able to, and we’re trying to be able to make them happy.
And I honestly think what most of that does is it makes us miserably unhappy and it’s awful. I talked about this to a friend of mine. And she said to me, Gary, it sounds like when I came out. She said you came out as person with disabilities. I said yeah, I have them, I own my disabilities they don’t own me.
They are a part of me. But they are not me. And once I owned my disability, it stopped controlling my happiness, my sadness, my wants. I came to terms with okay, this is it this is what’s happening. I can do this. How am I going to make it better? How am I going to make myself happy? How am I going to make new friends?
Because the first thing I saw, well the last thing I saw was the back of everybody running away from me after I got hurt after about two years they kind of run from me. Cause I was in angry mode still. I think I lasted in angry mode for about four years. And so nobody, nothing. So I built my life. And I built it up and built it up and four or five years it started to go better and better. And it started a snowball since then.
Dealing With Anger
You know the angry face. That’s interesting. Who were you angry at the was it somebody was it something what was it?
I was angry well, in my case I was attacked. So there was two people that attacked me so I had somebody to be angry with. I had friend to have had strokes and they’re saying it shouldn’t have happened. You know, they’re angry at God they’re angry at life they’re angry at everybody around them that they’re angry at a person.
Hell, some people are angry at me because I had three brain injuries and they only had one and they’re feel a little worse than I am. So you’re in pain and you’re frustrated. And you do lash out. Because the first thing is you can’t understand why you’re feeling so bloody angry.
You can’t understand why everything is upseting because this is a whole new brain in here. This is a whole new way of thinking and it’s all new. I mean, if a three year old throws a tantrum people go oh well you know, they throw tantrums. I’m only 12, 13 next year, I’m a teenager God forbid I feel like the first time I went through that one either. ooh nasty.
Okay, I just got that your humor is wittier than mine. So you’re only 12 because you’re kind of starting again from that new version of yourself after the injury. And, you’re learning about your brain again, and you’re kind of learning how to navigate everything. And I get it. That makes sense.
I was I spoke in the Irish Parliament supercommittee education, employment, and house committees all in just one big super committee. And I introduced myself and I said that I’m six years old, oh I’m 54 years old, depending on how you look at it. Just me, as I am now is four years old, the body and the sickness 54.
And that’s what it is, because what are you, what you think you are, what you feeling you are inside your head. And what people need is to you that you project and what you say and what you feel. But when the thing that does all that the brain gets cobbled about a bit shaken and not stored, new neural pathways though, parts die parts get damaged.
So it’s not the same brain anymore. So if it’s not the same brain, you’re not the same person. There’s a lot of you still there. But there’s bits done. There’s new neural paths, like between my fourth and few cat scans. My neuropsychologist explained it to me.
So she said, I can show you but you won’t understand it. Between my fourth and second CAT scans, which was 12 hours apart, there was new neural pathways being formed by my brain. The brain is very selfish, it wants to take and it wants to work. So I give my brain every opportunity to fix to set to make new neural pathways to do more.
I’m constantly doing cognitive exercises, doing mindfulness doing CBT you know, all sorts of things that I’ve got done over the years, to constantly keep my brain active, and to try and make it as fast and as sharp as possible. So you know, I try and keep myself brain fit.
Yeah, I love what you said you do. CBT. You do mindfulness, you do everything that you can to keep your brain changing, and growing, and getting better. I love the sound of that. You don’t look like somebody who does mindfulness though. Because on the internet, people that do mindfulness look way different than you man, you know.
You see, that’s the other thing. One size doesn’t fit all. I’ve never fit in any of those. I do little snippets. I take little bits that I can use with the process. And I put it into my own, the doctor said to me when I was coming out of recovery in the first two weeks, 16 days in the hospital, he said to me look before, some doctors will tell you six months, some doctors 12 months, some doctors will push it two years so many even say three years.
You won’t know where you’re going to be till you’re that far along. He says I don’t believe that, he says before six months are important before years are important, you will reach milestones and your therapy will plateau at stages but never ever stopped working at your recovery.
And I took what he said and I’ve okay admittedly in COVID I couldn’t. I mean, we have severe lockdowns in Ireland for 18 months. I left this flat to go shopping. My Google map thing is about I mean, my steps I did 300 steps around the little flat over here so like it’s, that’s been my life for the last 18 months.
So what you’re saying to me is, you’re 12 years past the injury. And what you’re telling me is, you’re still actually it’s in the front of your mind to do things, to continue the recovery to continue healing to continue working your brain still in the front of your mind.
And what you just said was because of COVID you found that difficult to continue doing that people who are having strokes now are saying how hard it is to get access to services. And they are 12 months in and they really need it and you’re 12 years away, and there’s no doubt you need it but you’re not at that acute stage you don’t really you don’t miss out like they are in that real acute phase.
The quality of the medical system over here to HSS is if you have a stroke, the hospital side of it, the initial recovery side of it is great. It’s the long term rehabilitation services. Now, I’m a client of Headway Ireland, I’m a proud client of Headway Ireland. they saved my life two or three times at this stage.
And at the moment, they had to close down the day services where out of all those services and they had to put them online, which people found difficult and zoom at the time wasn’t great a system or the easiest system to work with, it’s gotten much better. And and it’s the service the support wasn’t there.
What is it like Gary?
Headway Ireland is a brain injury support services, they provide the support services for the government for the health service, They’re a service provider for the health service, for the Irish health department. So we don’t go to a hospital. They don’t do the cognitive training or all of that stuff I’m on a cognitive rehabilitation program at the moment with my neuropsychologist.
Recovery During Lockdown
Because I needed it because we knew locking down was easy. It was unlocking was gonna be the hard part. See lockeding down, I did years ago when I got hurt. I stopped going out I stopped seeing people I couldn’t do anything I wanted to do yeah, I did that well, years ago.
A lot of the things, it was easy to pull myself back into the wrapped into my own little bubble. But the last time I came out of my little bubble was very hard. So I knew this was gonna be difficult. So that’s what I’m doing at the moment with my neuropsychologist, we’re working with where I’m going wrong, where I’m going, right, why am I going wrong? Why am I getting this wrong? Why am I getting this right? It’s constant work. You can’t give up you can’t stop trying because if you do, you switch off.
You know, I’ve not spoken to anybody. And maybe it’s just a lack of asking the right question, but I haven’t spoken to anyone who’s 12 years out and still seeing a neuropsychologist.
Why shouldn’t I? You know, that’s the way I look at it. Funny thing is I met her when she was in training. So I’ve known her for 10 years now, she’s great but that’s where the support is needed. Because I walk into Headway headquarters down the road, in black hole square, and it’s not just about what they say to me or what I do.
I might go in and sit there at the men’s shed and just drink tea and slag people with love. Often that’s what I do, but it’s Headway the building gives me a hug. I don’t have to be Gary Kearney disability advocate. I don’t have to be Gary Kearney radio host. I don’t have to be Gary Kearney. I’m just Gary.
And I can have a bad brain day and not be paranoid. I can be having a bad day or a good day. And they’ll be happy for me they’ll still be talking to me whether I’m having a bad brain day or good so it’s the one place in the world that I can breathe out and not have to try and present myself as a more able person than I actually am.
Is that what led you to that point where you just said before you said that they saved your life a couple of times like, did they did you really get to that point where it got that serious?
I wasn’t gonna commit suicide, but I was going to end up dead because I wasn’t taking care of myself. I was taking risks. I was drinking heavily. And, I wasn’t caring for myself. And there’s other things you’re not supposed to do when you’ve got brain injuries and I was doing them all, because I didn’t care.
I lost everything. You know, I rang them up I said I’m at the bottom of my rope and I’m on a piece of string and I really need help. Everything I touched, I’ve lost my job. I’ve lost my friends, I’ve lost my family, I’ve lost some if not most of my family, I lost my life savings. I lost everything. I was just about to become homeless.
So I was just gone, It wasn’t I was gonna try and I don’t quit. Well, I was living too recklessly, I was living so recklessly because I didn’t care about myself.
Was that part of the anger?
Yeah, part of the anger, I was angry at myself for not doing better than I’ve done which is God knows, how often do we beat ourselves up over about, you know, certain goals, our brain lets us down or we forget something and we beat ourselves up again.
And it was like a flash. Until one day I said, why am I still beating myself up? I’m helping to sods that did this to me in the first place, I’m mad. That’s the only thing I thought I was going insane as well. Because I couldn’t express myself. Oh, that’s called aphasia. That’s okay. This is what you do. You mean, this is normal?
That’s why I love my neuropsychologist, because she put me in, I have a lot of different issues. Well, I wouldn’t have them extreme as a lot of people. But my whole brain I had massive sub cranial pressure, and they couldn’t release it. So I had a head like the size of a mellon, and my eyes were full of blood. And I was like, my brain was being squished down with neck and all sorts of stuff.
So all of my brain in different different stages was getting serious pressure on gray matter and white matter was getting damaged and all sorts of stuff. So you know, you go to your fourth classes, you now have brain injuries, welcome to brain injury club, this is a brain, this is a skull, and then they open it and they show you all the bits and you know, it’s great.
And then they give you a list which tells you which parts of the brain does what and what does which and if you’ve got a problem just and then you match them with your own brain parts that you’ve got damaged. And you go that makes sense. I couldn’t because I don’t know I go to different parts all over the place.
But when I met Elaine, she said to me, Well, this is what he just did. She did the neuro psych assessment, which I of course took as a test and attacked. supposed to take eight hours. I did it in three and a half. Well, I didn’t know. I just went for it. And she went through it and she went to the top neuropsychologist, she explained it they came down and told me and I swore I told him that wasn’t true.
They diagnosed me with ADHD 47 and a half. Now looking back on it, she then proceeded to read my life backwards to me how long my relationships were jobs were friends were family were everything she read my whole life completely backwards. And so with everything that happened, they said your unique brain chemistry and brain set from your ADHD may have probably has something to do with why you’re still here because you shouldn’t be.
But your brain was fairly odd in the first place. So, you know, that’s how you survived we think but we can’t be sure, you can never be sure with brain injuries, you know that, again, my surgeon Connor, he said to me, Gary, we know more about the dark side of the moon that we do about the human brain.
Like No Other
And it’s just, you know, we can work with life hearts, we can work a little bit with live brains. But we can’t do it like we can the rest of the body. Because once your brain is dead, it’s dead, you can’t see how it works. You’re mapping and you’re doing everything.
That’s a profound statement actually. Because they can dissect the heart and see what happens in there, how it’s made valves, they can see all of that and they can see the damage to a valve or to an aorta or wherever but you are right once the brain stops working, there’s nothing to see because it still looks the same as it did when it was working.
And those little bits of cells, they’re not like any other part of the body so that for the first time ever makes sense to me now as to why the medical research in this space is still so what do we call it? So early on like they’re still, we got hardly nothing we know what certain things do but.
Barack Obama before he left he set up a team in the US called Brain and he called it man’s Final Frontier our own brains 30 billion they’re gonna invest over the next 20 years. And I thought that was great because spinal injuries, only became a big issue after world war two and then Vietnam.
Amputees was World War Two spinal injuries were World War Two, but particularly in the US after Vietnam. And now with the last few wars, it’s all traumatic brain injuries. And so many of us has trauma, billions and billions of dollars of traumatic brain injury at understanding it.
And it’s getting better. I mean, I might want to have a stroke, my mother died of a stroke. All my uncles on her side of the family died of stroke, some of my cousins on that side of the family died of stroke we’re genetically, my sister found out she got a test that we are genetically susceptible to strokes. So I had a traumatic brain injury because I couldn’t follow the rest.
The advances being made are great. But I reckon that we’re the best people in the world to teach people about brain injuries. And to help doctors understand this more when we tell them what’s wrong, what’s right, what’s working, what’s not working. We’re the only guinea pigs they’ve got.
But we’re the experts because we live it. He can tell me that this neuron’s doing that and that neurons do that and I can tell them that but actually, I don’t know what we’re doing so but they’re having a fight at the moment, because I’ve got terrible pain right here.
I can’t feel that I’m getting stressed out because of this, boy that’s why I like neuropsychologist because they can say, well, that could be this and they’ll work it out with and we’ll work out my triggers. Like I’ve done to develop more triggers as time goes on.
That’s why I have a support service as time goes on. Because you don’t recover from brain injuries. you survive, and you carry on. And it’s a constant. It’s a never ending process. It’s not like your leg can heal. The brain doesn’t heal, you don’t get better from brain injury. The brain doesn’t grow back. It changes and adapts and does whatever it has to keep itself functioning.
It adapts. I love that. That’s exactly what it does. That’s what neuroplasticity plasticity is. It’s just adapting it’s like humans when I’m not sure where we emerged from or which part or which part of the planet we’re on and what that was like, but we’ve adapted to be able to live in the snow, you know, in the coldest conditions in the hottest conditions. In the wettest conditions in most humid condition we’ve adapted to be able to survive everywhere. And that’s what the brian tries to do it tries to adapt and survive under duress under any circumstances whatsoever.
The brain is the most selfish organ in the body. Because it’s it I encounter I have me and I have the brain my subconscious. I just need to consciously wants to do things, but the subconscious mind is not having none of it. So I’ll make deals I say, Okay, look, let me get all this tool.
And then you can talk me down for a week if you want to do say, Well what he did, I said look, there was a French pop over, right, I don’t know if you know potholing where they climbed down with holes in the ground. And they didn’t have them caves and other sort of suffering. And this friend potholder went down with his famous set of caves.
He got lost, he tried to find his way out, and he couldn’t so he laid down and he laid down besides water. So he could at least keep hydrated. And she later on he later on he later freezin called like total darkness and he later turkey two days later I think it was they found him and his brain was still working.
He was complete muscle wasting. The brain has taken all of the energy it took down each part of his body one after the other afternoon or to keep whatever energy that but the body was keeping to keep itself alive. It was actually starting to eat the heart muscle to keep the child from live keep taking the energy that should have been counted the hack to keep itself alive.
Now he got better and he got he recovered and all the rest. But like that’s what the brain the brain wants to look after itself. So I try and give it every opportunity. I try to feed it as much as it wants to be fair, I might try and make it work just you know you check exercise the more you exercise the fitter you get. I find the more I push myself, the more I try mentally to do things I get a little bit better now.
But you’re not perfect. You’re not perfect at it either, are you?
No God. People say, well, you’re so great. I said every morning I wake up, I think, great. What do I do next? I said yeah when I wake up. You get out of bed? I don’t, why not? Because I can’t remember. I have to think about what I’m doing. Everything I do, I have to think about it before I do it.
If I’m going somewhere, I have to have a plan on how to get there. But because I’m so conscious of things going wrong and aware when things are going wrong, I have three different ways to get there and three different ways to get home. I have multiple setups and backups, somebody said belt and braces I said gaffa tape string and everything else I can think of I plan for things to go wrong. So when they do I don’t freak out.
So when when did you become interested in disability support and being an advocate in that space because I see a couple of hashtags in that background there. You got #disabilityGE2020.
GE2020 was a general election. It was a general and local elections and general elections. We use it for both. And Make Way Day is on the 24th of September. It was we started in Dublin but now it’s across the entire country. And it’s about keeping the footpaths clear, it’s about keeping the footpath accessible.
It’s about not parking on footpaths, cutting hedges it’s about disability access in the in the urban realm I’ve since learned the last one, that one that one there.
Purple Lights 19
Now that’s very special. Purple Lights 19 was my idea. Friend of mine said building was going purple on December the third for un International Day of Persons with Disabilities. I didn’t know we had day talked so if they can go purple. So I have a tendency I just throw it into the back of my head going into this the answer is there I just can’t draw it out like I used to like I was known as the brain because somebody say Gary watch this they go that’s that what will we do when get that or we were there and we did this.
Gone right that’s short term memory problem and the long term and medium term are good. But the retrieval system is very bad. It’s like when I once had a had just for brain of a filing system it’s now a big manual filing system that I’ve thrown with hundreds of stairs so it can take some time for the answer to come in.
So throw the Idea into the back of my head and I let it bounce around in there for a while and it’ll come to me so Purple Lights was why can’t I do this? Why can’t they do this? How can they do this? See change not why can’t why they don’t but how can they? why will they? How can I get them to?
And with about a month to go three weeks I decided to start ringing people, so I rang the national concert hall in Dublin then I rang Dublin city council and I disability federation of Ireland were mentioned started pushing it and pushing it to the college in Dublin I got the Bank of Ireland and college brain which is the same opposite declutter and we started getting bits and bobs and soon it started to get a bit life was a great success because we have a thing called The Rock of Cashel.
Let me just paint a picture i’ve just Googled it the Rock of Cashel is an amazing old Gothic building at the very top of some kind of a hill or something right? And it’s sensational brick solid you know it’s man it’s what we see in you know those movies about you know, William Wallace or somebody like that.
It’s large heritage site and I got them to turn it purple.
Wow. So yeah, they lit it up with lights.
They have lights there that they can light it up and they do light it up for Patrick’s Day for Pride, for different things but I never knew about it. The group themselves found out contacted disability federation of Ireland I said do you mind if we light up purple?
So they rang me and said Gary The Rock of Cashel wants to light purple I said whoever wants to light up purple can light up purple this is great they lit up The Rock of Cashel, and that was amazing. It was on the Nine O’Clock News to six o’clock news the main news broadcasts in Ireland.
There was purple lights, the celebration of UN International Day of Persons with Disabilities a world first The Rock of Cashel was lit up and I did it. A brain injured guy from Dublin. And it was exciting, and you know, like I said I was 47 years old. I was traveling on the scrapheap I just did sort of hang around till I die and I refused to do that.
And I’ve gone on and I’ve lit The Rock of Cashel purple and Cork City Council, Limerick Galway all over the country, lit in purple, the Irish Embassy in London in purple. I’m hopefully trying to get the Polish embassy or the English embassy in Poland, because the ambassador is a cerebral palsy and survivor person, and he lit up the British Embassy I lit the British Embassy in Dublin purple. They’re big things for a working class lad for cooperation house to be going it’s not a certain thing I’d be expected to do.
They are brilliant things to do to achieve. But also the underlying cause is really benefiting from this. So how does it help the cause the disability advocacy cause? When you do that, what does it actually do? What does it change? What does it create?
Purple Lights did, when I’d ask people to turn things purple, I put it in this way. I say look, you light up green for Patrick’s Day. You light up rainbow for pride. So you light up purple for people with disabilities. It’s the same thing. What do you mean? I said we’re 20% of the community.
We’re asking you to celebrate the day that is designated our UN International Day. And people will ask you why everything’s turned in purple? It’s access it’s an awareness campaign. It gets people thinking, why is everything purple, it gets in the newspapers, it gets to the TV, it gets on the radio, especially on my show.
They’ve gone very heavy on a show. But people other presenters will go hey folks everything’s turning purple, companies say boy, how was it? I didn’t know. And they’re becoming aware then of people with disabilities. And it gives you the chance to say look, you help us with corporate life? Could you help us? Did you know this? Could you support this? Or could you help this group brings them into it without the sympathy vibe.
These poor sods, you know, God bless them, you know, you have to help them. They’re disabled, you know, none of that. It’s not the Oh, look at us, we’re helping you disabled, like, you know, the companies go out and paint a few walls and they all come out they get the T shirts, and everybody’s there.
There’s photographs for the staff magazine that nobody ever thinks will ever go till the next year when they do in the workplace. And you’d say, Well, what would this it’s getting to the end at the top level for two more years. And that’s what we need this morning.
We need jobs. When you tell us we need education, we need support. And we get it in at the top level. And that trickles down and then people in the staff are saying why we don’t work with this. It’s because of this. Oh, that’s a great idea. Yeah, I’d love to help.
And they may have people in their family or disciple they may be disabled themselves and struggling to stay afloat because they’ll forget especially with loss. We hide in plain sight people will have brain injuries and I can come people that are not brain damaged that they’re not disabled because they’re embarrassed by it.
Like I said, I came out with purple lights turns everything purple. Like Patrick’s Day turns everything green all over the world. So if you imagine if the entire world turn purple on UN International Day disabled people every day, every day us celebrating us as a people as a community. And not like the Paralympics, oh look they’re superstars because they can do this.
No the person going down the road with a guide dog or with a long cane or in a wheelchair with cerebral palsy or with brain injuries especially with brain injuries. And I’m biased. And we have to try and live to a standard of able life the people don’t understand that I explain it as I’m working at 150% of what I should be working at just to look reasonably okay in an abled world where in headway, I could go the same way when you’re around people with disabilities.
You don’t have to try and not be so disabled to make the abled people feel uncomfortable because to get comfortable with it, you know that they get guilty and feel bad and that they want to help people that they don’t want to help you because you to try and help with the problem. And so because coffee shop like I try and get rid of all that.
I said, Look, if I’m having a bad day, I’ll tell you, if you want to know ask when somebody will say any if somebody asked you answer it, tell them the truth. Because they’ll appreciate it. Because they will appreciate it because they have to because they asked the question. Don’t hide don’t be afraid. I stopped being afraid of being a person with disabilities. I stopped being afraid of admitting that I’ll be in the middle of a show and I’ll forget the name I’ll forget something and I’ll go blah blah.
Well sorry for that’s an aphasia mode the word has just left the building. All the way home as I’m talking. My brain is gonna crack a clapper clapper trying to figure out where I was, what I meant to say and how I can get back to it. And I get back to it and I carry up. What I don’t hide it anymore. I don’t try and get the studio, the engineers to quote it, match it and do it. You know, make it seamless.
I’m not seemless. I don’t want to be seamless. And I want people to see my mistakes. I want people to see me fall on my ass. Because it’s human. And they have this sort of image of us is either poor sympathetic victims are disability part. Where it’s their superstars, look at them they can do anything we’re not we’re people you know, with not special needs but different needs. Purple Lights is a way of introducing them to 20% of the community. They don’t know how to get you to think about it a bit more. And awareness works like that.
I’m looking at the images on Google. All you have to do is type purple lights. 19 and you get a whole bunch of images of the event and you’re standing in front of a bus.
Haha, yeah. My dad used to drive and Dublin was right. And they wrapped one in purple for me, they wrapped a buss they did it two years in a row I guess we’re going for 3rd one this year. Yeah, they wrapped a giant double decker bus in purple that drove around the city for seven months, and would have been seen by millions and millions of people celebrating UN International Day of persons with disabilities.
And it’s massive the buses massive the riding is massive International Day of persons with disability. I mean, it is, a sensational thing to see because buses are on the road all day every day. People get on them, they get in them. They sit behind them, they sit next to them in their car. And it’s pretty amazing. I can see there’s a distant picture of another building that has been lit in purple from across a river. I see that.
That’s I think that one’s Limerick. And we got Dublin county council City Hall, the Mansion House, we got Cork City Hall. We’ve got colleges all over the place. And the corporate community got behind us and beautiful their buildings all the way down the river was purple.
Some of the bridges were purple. And it makes people think of the thinking about people with disabilities not as simply and not as heroes just as people. And that’s that’s half the battle is to take us. It’s like the social model of disability rather than the medical model that you’re right about it just thinking of us as people because that’s what we are for people.
So the International Day of persons with disability is the third of December every year is that right? I’ve never heard of it, Gary, I can’t believe I’ve never heard of it. I know that the Stroke Foundation in Australia has a purple day or something like that. But it’s not really that well associated to the day that you describe it. I’m not sure if it’s on the right on the same day. That’s really strange.
The group I used to group by I picked it up I picked a lot of the information above is an Australian group. I can’t remember the name I’ll send it to you when I find it. And because UN have a very, official, but typical Australian they got passed over and created a fun day and created very important messages but with a little bit of kick to it.
And as you know, somebody said to me, Gary, you’re not Australian, but you sound very Australian. I said, Well, actually my sister lives there for 30 years. I said but no it’s the attitude. It’s a real, you know, get giddy and get it done and have fun while you’re doing it.
I’m looking here. There are some other days that are purple days, and one of them is Make Purple for stroke. Yeah, so it seems to have been used in that way. And it’s that is the that’s the Stroke Association. I think that’s a UK organization.
Purple is a particular color for neurological conditions, right. Or purple is the overall color for disability. That’s why I have the purple lights because I am an ex roadie. I’m an ex technician, whatever you want to call Stage and Stage Manager. So I knew the simplest thing to do was to turn lights purple with LEDs.
I mean, the light just there. It’s a simple matter of getting an LED light in your room turn in to purple. I think the color change light bulbs by the LED is two strips of LED is around the TV and you’re car or whatever you want to be flashing, turning purple. And that’s all I’m asking people to do. And people going in except they were like when they get to DPO my old job. The most historic building in Ireland, the Dublin Post Office where the rebellion was started in 1916. turned purple.
I think you’re right. The purple is the color that’s used in a lot of those spaces. The Epilepsy Foundation has the 15th of June, it is a purple day as well. So okay, I’m starting to see the purple is being used generally, across those types of organizations. So it’s good to see. It’s really good to see. So mate youre doing great work. Tell me that work. Seems to also be a part of what you do on the radio show. What radio show is that? How long have you been doing the radio show?
Viva Vox Ireland
I’ve been doing the radio show. Technically, for four years, I’ve about 160 shows. So I had to stop for 40 or 50 shows at the start of the pandemic because I couldn’t get my head around it be quite honest. I had it. I tried to do two of them on zoom and they failed.
And you know what it’s like when you try something that’s very important to you and you fail, you run away from it, and they’ll come here ever again. You don’t really tear up doing that again. That didn’t work. That’s my brain injury. It’s my brain injury. It’s my fault. I’m a terrible person and boy am I trying to do you know, downright horrible spiral.
So I fought my way back out and I started again, I’ve been doing the show now. I have about 160 shows Don Weaver walks the disability show what a difference on 103 point two diversity FM. It’s available on ww that Dublin City FM w it’s every Tuesday afternoon at 12:30am. So it’d be half midnight for us. And polished. All of the shows are online.
All of the all the shows are a podcast. We were on SoundCloud. We’re now on a new one. But they’re all available on the website. And my plan would direct the show was to advocate and educate. And there’s a short one that I didn’t say at the time because a lot of people will take it Oprah but also to entertain.
Because if people if you have a show about disabilities, it’s only a part of pitty. And I didn’t want that. And it’s not a show for people with disabilities. It’s a show for people. It’s a show about people. It’s a show about people with disabilities. Sometimes our people like today’s show was with Dr. Suzanne who’s the head of transport infrastructure Ireland safety.
She was talking about shared space and shared cycle lanes and cycling two foot, you know, things that affect our day to day stuff. And she was very positive about where I’m positioned myself on the issues. And it’s about educating people about the issues that we have that they don’t notice, as you’re trying everybody Commedia doors, and you can do this.
You don’t have to drive everywhere, as some of us do. Oh, everybody can walk 500 meters, no, everybody cannot walk 500 meters. And this is what I’m trying to get out there. But rather than no shouting, screaming, I try and bring it into the conversation. And the shot was is I’m crowded there somewhere, I won an award for it.
And the fourth year, which was really good. And it’s all about trying to educate people about the reality of being people with disabilities and living in the disabled world. Because it’s not, it’s like I said, all the time, we are strangers and enable loud, because it’s not designed for it. What if you listen to us, and do what we ask, you will design a better world for everybody.
You can service everybody, rather than just the majority of the population, the conversation of ableism is something that’s really big at the moment. And people are starting to understand the difference between, you know, having a city or a public transport system organized for people who are on two feet and walking normally, and all that type of thing.
Accessibility For Disability
And how that limits a lot of the population, a lot of people from actually actively participating in that community in Melbourne, where I live, and I’m certain it’s like that in most other cities in Australia, I haven’t been to all of them, but I’ve been to a few of them.
If you’re in a wheelchair, you there’s nothing stopping you from getting anywhere, not on a bus, not on a tram, not on a train. And right now, they’re still finishing off a project to raise all the platforms of the trams, so that people can just roll up and roll into the tram with their wheelchair.
It’s the most amazing thing abled people are getting pissed off about it because it’s taking away car spots, and it’s decreasing the width of the road. But they’re not understanding the massive difference that it’s making to people who are in wheelchairs. And I didn’t really I took it for granted in Melbourne because it’s been like that for many, many years.
All the footpaths, or have have ramps that go down. There’s no curb stopping you from driving your wheelchair off of that. And I went to Greece after my after my brain injury after my strokes. And when I was in Greece, it was just after my surgery, so I had to spend some time in a wheelchair and I realized how difficult it was to get around some places.
But when I went to Greece, I realized that in Athens, if you’re in a wheelchair, you’re pretty much stuck at home, you’ve got nowhere to go, nothing to do because you can’t get out of a building, let alone use your wheelchair on a footpath and down the road. It’s just not possible. There’s even trees planted in the middle of a footpath in Athens.
And, most buildings. Absolutely. Most buildings not even one or two. I didn’t even say one or two have ramp access to the elevator of their building to the left of the building, not not a single one of them that I saw. And I was there when my cousin broke her foot. And she had to climb up on her but she had to sit down and drag herself up with a freshly plastered foot.
She had to get up about 15 steps to get into the elevator. And then I had to go into her apartment, grab a chair with wheels, like a computer chair and somehow get her onto that chair, roll her into the elevator and then roll her into her apartment where she spent the majority of her six weeks recovery. Because getting out of that building was impossible.
So I love what you’re doing. I love the way that you’re raising awareness. I love the fact that this conversation is happening and if the city of Dublin needs an example of how to go about planning a city around all the population, not just the abled people, all they’ve got to do is do one of those, you know, public paid flights to Melbourne and have a look around.
Well, I was hoping to get to where to Belvoir but a car Stein went, by the way when one of the pandemic, so you never know, we might be able to meet up yet. But we were the first city in the world to have fully accessible public transport. And we see very good things like that. But we have some very bad things as well.
So it’s trying to keep the gourd or keep the process moving forward. I started to say this thing, and it’s driving planners, absolutely not practical, not crazy. I said, that’s the way you have to design your designing pretty, not practical, and gone mad. But that’s what it is.
But it’s up to us as people to Okay, sometimes you have to kick off and complain and more female in your local counseling, your local MP or local senator, whatever, when something’s bad, don’t kick up and scream, don’t ignore just right off and complain about it. It only takes five minutes.
But if they get enough complaints, they start to listen, because politicians aren’t gonna know what the problem is, for a person with a stroke. what a person is with limited mobility, to transport infrastructure, you’re avoiding suit available in Germany, to gransport.
What is simulate old age, but one of the simulations is a simulated stroke. And roads loaded stroke was the picture with the arm with the false with the mobility problems of all side. And even they’ve got five different pairs of glasses that chose different types of blindness, or visual impairment or different types of visual impairments.
As she said, she said, I’m gonna put all the senior planners into this to the left, and she wrecked her, she’s going to polish students and make them understand. And it’s not simply that will create empathy.
That’s not going to create sympathy they’re going to only ever realize and that’s the most wonderful word you’ll ever hear what as an advocate, is when somebody goes, I never realized Yeah, because that means you’ve got Yeah, now understanding of last.
Gary, thank you, mate. I really love that man. Look, we have struggled through heaps of technical issues. And before we have another one, I’m going to wrap it up. But I really want to thank you for reaching out for the work that you do for the, for overcoming your own adversity, for continuing your recovery for going out of your way to continue recovering.
And I think you’re a great example of what’s possible, what’s possible to be really shitty and low, and in a dark place after a brain injury. And then it’s also possible to come out of that, and make a massive difference to other people’s lives. At the same time making a massive difference to your life. Because I feel like you doing this stuff is giving you purpose and meaning.
A Reminder for Gary Kearney
That’s it completely that wall there is not about ego, that’s to remind me when I’m having a bad day that I make a difference that I count. Because we’ve all been in that hole of self pity and self hate.
Where nobody cares. I wouldn’t matter if I wasn’t here. I’m useless, I’m this, you know, that self hate, that’s to remind me I make a difference what you’ve said to me, has really got to me, and I really appreciate that.
That’s what makes doing what I do worthwhile. I’m helping other people. And that in turn helps me. It gives me a reason to get up and to go. And knowing that I’m helping somebody is the greatest feeling in the world for me.
On that note, thanks so much for being on the podcast.
Well, thanks so much for joining me on today’s recovery aftershock podcast. Do you ever wish there was just one place to go for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.
This road is both physically and mentally challenging from reclaiming your independence, to getting back to work to rebuilding your confidence and more. Your symptoms don’t follow a rulebook and as soon as you leave the hospital, you no longer have medical professionals on tap.
I know for me it was as if I was teaching myself a new language from scratch with no native speaker in sight. If this sounds like you, I’m here to tell you that you’re not alone. And there is a better way to navigate your recovery and build a fulfilling future that you love.
I’ve created an inclusive and supportive, accessible membership community called recovery after stroke. This all in one support and resource program is designed to help you take your health into your own hands. This is your guide walk through every step in your journey from reducing fatigue, to strengthening your brain health, to overcoming anxiety and more. To find out more, and to join the community, just head to recoveryafterstroke.com see you on the next episode.
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