[Doug]: Welcome to episode 12 of Feeling Through Live. We're joined today by Carol Brill, who is a golfer and advocate, and also just someone who I've had the chance to get to know as just a really interesting, person all around. So I'm excited to talk to all, talk to you today, Carol, about a whole host of topics, but, for starters, why don't you, why don't you tell everyone where you're tuning in from
[Carol]: Hi, everyone from Dublin, um, happy holiday and, um, I live in Dublin and I've been living here all my life, which is so many years. Um, actually I'm 50, 50 years old, so I've lived here in all my life. Um, I have usher syndrome, time type two. Um, I'm a very passionate advocate for, uh, trying to get deafblindness recognized as a unique disability in Ireland. Um, I'm also promoting awareness about usher syndrome, visual impairment, deaf blindness, um, you name it. I met they're advocating, I'm being a pain in the backside. Um, and then in my spare time, well, in my, when I'm not doing my advocacy work, I I'm a mother to a 12 year old daughter. Who's soon to be 13. She thinks she's going to be 18. But anyway, um, then my mother who's 81. She lives with us as well. So I take care of her. She had a really bad accident. Well, yeah, she, she broke her back, am a new year and, uh, nothing to do with new year partying. I, my dad, um, but she broke her back and I've been taking care of her and thankfully she's walking again and she's in good health again. So, so that's, uh, that's what I'm doing. And then for my time off, I play doll. So yeah, that's me in a bit of a nutshell,
[Doug]: I, we're certainly going to want to get a lot more into all of that, but you know, I'd love to, just as a place to start. I mean, obviously there's a lot going on everywhere in the world right now. Um, I'm speaking to you from Los Angeles where I've just finished breakfast and you're on the other side of the world in Ireland where I imagine you've just finished dinner. But I'd love to just get a sense of just like what, what, what is life been like in Ireland, um, over the last few months? Um, what's the climate like over there? I mean, as you well know, I mean, obviously, you know, COVID is affecting everyone. You know, everything that's been happening around, uh, black lives matter is certainly an international thing, but that's certainly been really huge here in the United States. And certainly Los Angeles is a hot bed for that, but I'm just kind of like what, what it's been like. However you take that question, what it's been like in Ireland over this time?
[Carol]: Um, well, when COVID, uh, came into our country, um, effectively on March the 12th, we had to move quickly interaction and all the schools for shut down. Um, my daughter, she was off school at the time and she wasn't very well. I actually tried to get her a COVID test. And then when we, I received an appointment time, a microphone to say a text message on my phone, I had to say to go to this particular center and there was no way of getting there. Uh, we could've gone by public transport, but, you know, we were told that we had to, uh, stay in doors. We had to cocoon is the word that we use here, anyone that was vulnerable or anyone over 70 had to cocoon. So that meant my staff and my doors. I had to cocoon along with my mom. And so we were kind of plumbed into an absolute, uh, situation of pure chaos because, you know, there's only three of us in this house and I'm the one that runs the household.
[Carol]: Make sure I take care of my family. Um, I couldn't take my daughter for a test because we couldn't use public transport and we had no other way of getting there, uh, for the test. So we had to miss the test, but thankfully my daughter was soon very well. Again, I don't know if she had the COVID or not. We were not going to know for quite a while. And that that's an everyday worry of mine at the moment. Um, because we had to cocoon, uh, it meant that we were cut off from everything and just basics like grocery shopping was a mammoth challenge because the first online, uh, shopping, uh, delivery slot available to me was five weeks ago. So I was, I was very, very stressed at the very beginning of this COVID now I've kind of got into a system. Um, I also had to get very vocal, uh, to the public to say, you know, disabled people should not be forgotten. Um, because the concentration was all on people over 70, there was nothing about people with, uh, who were vulnerable or disabilities or single parent families because children were not allowed into grocery stores. So, um, this is how you connected with me because you happen to see an article isn't that right. Um, and I vocalizing the, the challenges for, for people with disabilities. So, um, thankfully now things are a little bit more calmer, restrictions have lifted, I'm back out playing golf. Um, so that's good. So it was just myself and my guide to play at a tee time, uh, while everyone else has to play three ball or four-ball. It's just myself and my guide that when we play, it's just the two of us on the golf course. So I feel very safe with her because she's a nurse and she totally gets my concern and I totally get her concern, um, as well.
[Carol]: So we want to keep both our families safe. Um, you know, just, I suppose we come back to the absolute basics with COVID because, you know, our primary needs are food. Um, and anything for heat, like we're, you know, we don't have the climate like you guys have in America at the moment. Uh, it's very gray, it's overcast, it's been raining. Um, we've actually had the heating on. Um, so it's, it's been a life of, uh, being confined in doors and, um, it was also the first time. It was a very good time for me to get out and work in my garden, which I have avoided for, uh, since 2001, basically. So yeah. Yeah. So, uh, yeah, my garden finally got to know me and I finally got to know my garden. I still don't know weeds from flowers, so, but if they look nice there, so
[Doug]: Right. That's yeah, that's all that counts. Um, you know, I guess, you know, I loved Ireland. I actually got a chance to go there when I was, maybe 14 and it was beautiful, but I don't want to upset you by telling you that it's like, basically like a sunny, like 80 degree day every day over here in Los Angeles right now. So we probably have slightly different climates to deal with, like you're saying, but, um, but no, thanks for that overview. And you know, I kind of love just the, you know, obviously there's a lot in this that is unifying all of us. A lot of what you described is pretty similar to the trajectory over here, except unlike you where things are seeming opening up over there, specifically in Los Angeles, where I am, things are actually starting to pull back and close down again, because there's a resurgence after attempting to open up.
[Doug]: But, um, I actually just loved the terminology of cocoon, maybe it's cause I'm so, so, tired of hearing quarantining or, or, you know, sheltering at home or the terms that we use here, but there's something a little cozier about cocoon that you're using there that I just, that really stood out to me that I really loved. So that was interesting to hear. Um, but again, really want to get into really, I'm really glad, I know very little about golf and my golf swing is horrible. So I'd love to hear a lot more about that from you, but first kind of before we get there, I'd love to just take, walk things back a little bit. I'd love to kind of hear, um, your, what, what, like what it was like growing up for you in specifically kind of, if you could just quickly take us through your journey of, of learning that you were deafblind.
[Carol]: Okay. Well, once upon a time, um, I was four years old and my mom noticed I wasn't speaking properly. I would say, you know, strange sounds for normal words. And she kind of worked out that I was lip reading. So after a few tests, it was confirmed that I had hearing loss. So I was given a brand new shiny hearing aid, which was one of these nickel boxes, silver boxes that you clicked on into your clothing and a big, huge wire. And it would just there. And it was, you know, I hated it because every time I went to run, the box would fall out and the wire would come out. And at one point my hearing aid fell down a drain. I was delighted. I didn't want to rescue us, but my teacher spent a lot of time trying to fish that box out of the drain and she succeeded.
[Carol]: But anyway, um, then, uh, when I was 10, my mom noticed that when I would come from outdoors, when the sun was shining yes, to some does shine. Um, but when the sun was shining, I would sit inside on the bottom step of the stairs and just wait about 10 minutes from my eyes to adjust. And then I would struggle with night blindness. I couldn't see in the dark. So my mother decided to have this investigated and to her horror, she was told by a prominent specialist at the time your daughter is going blind. You need to send her to the school for the blind. Um, and that was the manner in which she was told, um, horrific, quite horrific. So my parents, uh, decided to not tell me about my diagnosis. Um, the diagnosis at that time was retinitis pigmentosa, RP for short. And, um, they decided not to tell me because they felt I was having a hard time in school because of my hearing loss. I used to be always teased and laughed at because of my hearing loss in school. So, um, so they didn't tell me. And then I went through my teenage years thinking I was clumsy because I wore glasses the time. And I thought, you know, I was shortsighted. So I just thought you don't see at the sides of your eyes, you don't see in the dark. Well, I never thought about it. I just didn't know. So I didn't think about these things. So, um, I always just, you know, my little accidents falling over, I always felt I was clumsy and that was the way I looked back in my teenage years. Um, so, uh, when I was 21, I was experiencing a lot of, um, migraine headaches and, and my doctor was getting very concerned, um, and needed, you know, needed to have me admitted into hospital.
[Carol]: Um, when I was in the hospital, they, there would be a lot of hush talking behind the curtains. I wouldn't know what was going on. I couldn't hear. Um, but my parents desperately didn't want me to know about my RP. And so a couple of months later, I had to go back and have a checkup with my doctor and he says, um, I'm going to tell you something, um, you have, RP um, which means you are going to lose your sight. Um, and that was it. So I remember the long walk home. Um, I remember looking at every bit of dirt on the pavement thinking that's the last time and going to see that, you know, what am I going to do? Um, I'm not going to see this world anymore. And it was a horrible sense of panic walking home. Um, so when I walked in to my parents, I just said, adopted just said, I have RP. And my parents were brokenhearted. And they said they didn't want to tell me because they wanted to know that there was a cure or treatment first. So anyway, um, I I'm always a person that likes researching. Uh, there was no Google in those days, it was microfiche and it was libraries for research and encyclopedia. So, um, I took a trip over to New York where my cousin lives, she just lives in New Jersey and Dumont, New Jersey. Um, I stayed with her, she would drop me off at the library every day. And I would go through all the microphages to, to find where was research happening. And I actually traveled to Baltimore and I met a lovely, lovely doctor called, um, Dr. Finkelstein, I think was his name. And he just said, you know what?
[Carol]: I think you do have this usher syndrome. Um, it's not just RP because once you have a hearing loss and if you have more PE than it's, you know, it could be a usher syndrome. So we're when, uh, back home to Dublin. And, uh, I said to my dad, we need to find out what this is about. So we traveled to London and it was there that I was clinically diagnosed, diagnosed with usher syndrome. And that was it until about five years ago, I actually got my genetic diagnosis. I actually had to confirm that I had type two. Um, so yeah, it's been a very long hole, you know, just trying to find my actual diagnosis. But aside from that, I just threw myself into fundraising. I used it as an excuse to do anything I wanted, you know, when I was 21, I was a very, I was very shy. I was very introverted. Um, I didn't really do much, but once, once I knew what was happening to me, I decided, right, this is the time to live. And I was jumping out of planes, some parachute jumps. I was cycling on a tandem all around the state of Florida and then all along the East coast of Australia, Israel, um, I went trekking in the Himalayas. Um, yeah, I just did some crazy stuff, you know, but had a great time and managed to raise a lot of fundraise fundraising for research. Um, so, uh, as I was approaching thirty, I became the youngest chairperson and the youngest female chairperson in, and still have that kind of claim to being, um, to this date of the Irish organization called fighting blindness. It's the equivalent of foundation fighting blindness in the U S um, so I was involved very heavily involved in my charity work as a chair person. I did quite a lot of work. And then it got to that point with my vision, just deteriorating, more, I thought, uh, this is the time to step back and think about my career. So I embarked on a degree in psychology and I might just add like, you know, I had got married and then I got divorced in that time as well. So that didn't last, but I'm all good. Oh God. Um, so
[Doug]: Yeah, just for a moment, I'd love to go back, um, to that part of your story where you're talking about your, your parents, knowing about your diagnoses. Well, before you did, um, you know, now I'm sure you had your feelings about it then, but now as a parent yourself, looking back at that moment, how do you feel about that? Like, how do you feel about the decision of your parents to, to withhold that information from you?
[Carol]: I totally respect and understand. Um, they really wanted me to live life as normally as possible. And, you know, in those days with no internet, um, not, uh, having any sort of hope of a treatment or any sort of research, because there was very little research being done at that time. Um, it really was not a good time to kind of know about my condition and they really wanted me to live and be myself to do, you know, to, to develop myself as, as Carol and not as camel with usher syndrome or retinitis pigmentosa at that time, they only knew I had an RP. So it was only like when I found out and have that subsequent research trip to New York, that, that usher syndrome came into the equation. So I can understand it. I can respect it, but in this modern time with the power of internet, with the power of social media, like I had made friends all over the world, especially in America.
[Carol]: Um, I hope a few of my friends have tuned in today as well. Um, but they're, you know, I think it's important that parents do tell their children if there is a diagnosis when they're young, that the children know now because, you know, technology, social media, the power of the internet has done so much to become a wonderful supportive environment, sometimes toxic, but mostly supportive environment, um, that you don't feel alone in your diagnosis. Like, I mean, it's just syndrome is a very rare disease. So, um, they estimate that there's around 170 people in this country. Uh, three people I know very, very well in, in, uh, one of them is my best friend. So, um, hi Debs, if you're watching. Um, but yeah, um, I would say, you know, town, it's important that the child knows or whatever age you are, if you're young, that, that you do know, because like there's so much support networks out there now. Um, there wouldn't have been anything at the time, you know, at the time of my original diagnosis, there wouldn't have been any support framework. There's like, I mean, there's no care, there's no dedicated care pathway in Ireland for deafblind people. And there's, there's no organization, um, that, you know, is, is about, there is a residential, uh, charity called Anne Sullivan foundation. Um, they do residential support for their, their community, but in terms of, you know, other kinds of support networks for people like me in my age group, um, or in the working age group, there's, but there's nothing really out there, but I'm working on that and I'm campaigning for it.
[Doug]: What, so you, you talked about, you know, finding out about your diagnosis and that kind of molding, or helping start to shift a shy 21 year old young woman into this more adventurous spirit, trying to kind of take advantage of things. Do you, do you look back at that now and in any way, maybe not this specific mode in which it created that change, but do you look back and in any way, are you thankful for the kind of adventurous inclinations that, that diagnosis gave you as far as what, what you ended up doing as a result of it? Is there any element of that?
[Carol]: Oh, I would not change any aspect of, or anything that I did. Like, no matter how crazy some, some activities where I won't even mention them, but yeah, I just, I kind of felt a lie, you know, it's very difficult to explain. Um, yeah, like when you're falling out of a plane at 120 miles an hour, um, you know, your nostrils are going like, you know, uh, mad, uh, speed. Uh, it's, it's, it's an, uh, I can't describe the experience, but I can still feel my heart, my heart, my heart is pounding now just describing, you know, falling out of the plane. Um, the only thing I would change is I would have just eased back on the panic. Um, I had this awful sense of panic. I think it, Oh God, I'm never going to see this. I'm never going to be able to do this.
[Carol]: You know, I've got to do it now. I've got to do it now. And it's just this urgency, this pressure. And, you know, um, when I'm doing one thing, I'm thinking, okay, what am I doing next? And it was always about what was what's next? What's next? What's next? Because I felt time was against me. Um, if I knew then what I know now, maybe I would have just taken things a little bit slower and I would save it them and enjoy the experience a lot more. But like every experience was fantastic. I just would've liked more of it if I wasn't just so thinking, Oh, what's next. What's next?
[Doug]: What do you think you could do? Can you think of the moment or moment in time where that started to shift for you where you weren't like, say as panicked or weren't feeling so much like you're living into the future every moment?
[Carol]: Um, I think, uh, I think a turning point in my life, um, was when my son died in my arms and that was pivotal. Um, I realized how precious life was. I realized how precious every breath we take. Um, and, and for me, that's when I kind of started to calm down and just breed and be in the moment and become, and just accept what comes my way, because like, I've had a lot of loss in my life. Um, the death of my father, um, my marriage ending, um, my son dying and, you know, I'm losing more and more of my vision, my hearing, and you know, what these, these, I suppose having Usher syndrome is very minimal compared to the other losses I've had. And so I just, I value life. I value every moment and that's all I want to do is just to enjoy every moment. Like even when, just simply washing my hands or when I'm cutting food or just get the smell, get the taste, you know, really just not to be passive, just to really experience everything, um, that happens in my life.
[Doug]: So is it, is it fair to say that the, the, the panic that, that, that diagnosis initially induced ended up actually over time combined with some other real significant loss in your life plays a large part in you now very much having the opposite of spirit experience of being able to live in a very like present and, and largely grateful for the moment kind of place. Is that fair to say?
[Carol]: Yes, absolutely. Because you know, like five minutes, five minutes ago, we were in the, now that's gone, we can't get those minutes back. So we've got to make sure that we are present to the next five minutes and, you know, for, for all our time to come, um, because like sometimes you say, Oh God, what did I do yesterday? I can't remember what did I eat yesterday? I can't remember. That means you weren't like, we're not being conscious of what we're doing, or we have a lot of stresses and everything. But, um, the other part of me as well as is like, um, you don't like re we have a lot of challenges. Okay. Normal, everyday living challenges and carpet is the same. Um, but I think, um, it's important to remember like you can't problems take over. Yes, we have to look for solutions. I'm, I've, I've always had that philosophy. There's, there's no point in focusing on the problem. You just focus on the solution, um, because problems and negativity robs us of our time and we never get this time back.
[Doug]: I want to touch on that a moment. I'm sure your, your approach as far as, uh, focusing on solutions and also being very present, certainly serves you in your golf game, but let's take a quick pause for the interpreter switch. Okay. And all right. All set. Great. So picking up from there, let's, let's get to golf. Um, why don't you just let everyone know first, how golf came into your life and when you started,
[Carol]: I hated golf all my life. And part of it was because my dad hated golf and my dad said, I'm not retiring. I don't play golf. I don't want to play golf. So he never got to retire. Unfortunately he died before he actually got to, to enjoy retirement. So, um, my daughter was attending longer hours at school and I thought, well, okay, this is the time now for me to find a hobby for myself. Um, and I was, I just Googled blind sports, um, the internet, and I saw tandem cycling and I thought, no, I've done that. I saw hail walking. I've done that. Um, I saw swimming and I thought, Nope, I can't swim. I don't like water. So no. Um, I have done water skiing by the way, as well, even though I hate water. Um, and then up came golf and I thought, I don't know, but I look at it anyway for research so that I can tell other people about it. Then I clicked on the, the blind golf. And, uh, I discovered there's a golf clinic just up to vote for me. And I thought, okay, I'll go along. I'll just research it. And then the next thing, um, I really, I got such a lovely, warm welcome from the boys, uh, of Irish blind golf. And the coach put a club in my hand and says, right, you just do keep hitting a ball this way and see what you think. And I was kinda off, I don't really want to do this. And so, yeah, I hit a few balls, not so bad. And then, um, the next thing was, I just said to the guys, are there any girls in this, you know, society? And they said, no. And then I thought, okay, well, I'm going to have to address that balance and join and do something for the women.
[Carol]: So, um, and then that's it like I got hooked, and this was like five years ago. So I got completely absorbed in the game so much though that like, you know, I use the golf swing in my mind for like, if I'm, uh, I had surgery about four years ago and I was having all these staples taken out. And, um, because they had impaction, the surgeon had to do, uh, you know, withdraw the fluid around my scar. And that was, I was hyperventilating. And she just says, just focus on something you enjoy. And so every time she took out a staple or stuck in a needle, I was thinking of swinging a club. So yeah, that's, that's the extent of how much I love golf.
[Doug]: So, um, you know, I'm sure you get this question all the time, but what do you say when someone says, how does someone who like, probably can't see the ball as well as like your average golfer? How does, how does someone like that play golf where the assumption would be that it's all about hand, eye coordination? What, what's your response to that?
[Carol]: I go by feel, I, I have very, very little vision. I just have pinhole vision. Like the normal field of vision is 180 degrees. I can't see my hands. Like, you know, when they're right in front of me, they just have to be just around there is where I just had. I don't even see all my fingers. I have like three degrees of vision. So when I'm looking at the ball, I don't see all of the ball, I just see white. Um, and then, you know, I don't see it. I, I bring back the club and I hit through, I don't know where the ball has gone, so I have a sighted guide. Um, three says her name, and she just watches where the ball goes, brings me up to the bowl. She sets me up to make sure I'm going to hit the ball in the right direction. And, um, that's it, it's like we just go around chasing the ball, all around the golf course.
[Doug]: So just, just to back up on the mechanics of it for a second, just when you, like, when you're set up to, to swing and hit the ball, like are, do, are you, are you using your vision to focus on the ball? Are you, are you looking at the ball when you hit it? Are you, is that like, just, just trying to get a better sense of the mechanics there?
[Carol]: Well, what I do is I look at the ball, like, my guide, she'll put down my white cane and she puts it down. So I know that I must, must, um, parallel to that. I know that the direction that the pole is going to go in, um, and then I will locate the ball sometimes I don't. So, but I, I locate the ball and I look at that ball and then I just adjust my setup. Um, and then my guide, she will just me one more time to, to make sure my shoulders are in the right direction, feet or in the right direction club is correct for addressing the bowl. And then I just hit the bowl and that's supposedly it should go straight.
[Doug]: And so, again, as someone who's not a golfer myself, um, and is certainly like had my forays at the, at the range and the driving range and had, you know, varying degrees of success hitting it. Okay. Um, one thing that I do see in my friends and other people that play a lot of golf is this like ever, uh, this everlasting, um, like, uh, uh, attempts to master the swing. You know, I see people they're like just in their yard, practicing, you know, with a club and no ball, or not even having a club in their hand. And just kind of like going through the motion, uh, what's what's the process of like, finding your swing and perfecting it been like for you?
[Carol]: Well, uh, for me, I have to do this. So when I do this, I have to be on my shoulder, come under my chin. I have to keep my left arm straight, and I must keep my right arm and as close as possible, like, pretend there's, you know, a towel under your arms, so you don't bring your right elbow away. Once I keep that, you know, position of the shoulder under my chin, my arm straight, and then I come down and then keep the arm straight. Um, you know, I, I don't even look at the ball when I hit it. I kind of just glaze over sort of like a trance, and I just make sure that I turn my hands back, you know, to make sure that the club is going to be straight and, and nuts, you know, sloppy, um, and hit the ball and just do my finish and then pretend to know where my ball has gone. But no, I wouldn't know where it's gone. Um, but it's like a ballet movement, or a yoga movement. Um, you know, I, I, I suppose for me, the goal is not just about hitting the ball. It's just that moment that you're just connected. Every part of your body is connected to execute just one swing. And I mean, it's not just one big swing, it's all. So, um, like, you know, this pushing, um, if anyone heard our language, they wouldn't not have a clue what we're talking about because I, you know, trees will say, okay, we're about, you know, five paces away from the flag pole and I'll say, okay, are we going to do a three step glow or a three step punch? And then, you know, we have all these and she'll say, Oh, no, it's just a toddler. You know, we, we have this really funny language and, uh, all my golf clubs have names.
[Carol]: Um, my drivers called Cal, I used to, um, I used to say, you know, family weddings or funerals, and they say, Oh, have you met a mom? Yeah. I would say, Oh yeah, yeah, yeah. Well, what's his name? And I said, cow, because it's Callaway driver and I would say cow, and then, um, and they say, Oh, what does he do? And I say, he's a driver. So, and then I have a three wood, which is a, is a Cobra King. So I call that one Elvis. Um, and then I have this, uh, seven wood, which is my favorite, uh, fairway club. And she's called a lady because I hit like lady when I swing with her. So yeah, I'm a bit mad about it.
[Doug]: Yeah. I love that. I mean, you spend a lot of time with these clubs that I'm sure they start to feel like, uh, you know, dear friends or more, but, um, so, you know, you were, you were taking us through obviously, um, with your guide, you have, I'm sure have had a lot of time to really fine tune your language in your approach. Um, what was that process like getting there though? Was it, is it something that kind of like, did it take awhile to kind of get your groove around that?
[Carol]: Yeah. Yeah. It took a long time, you know, because I mean the most important, and it's got to be 101% trust, absolute trust that in the beginning, you know, sometimes trees or might just forget and should be walking on because we always have to keep moving on the golf course. Um, and, uh, she'd take off and I'm following behind her. And then I just decided to kind of go not behind her and just kind of walk to the right and the next thing I'm in a bunker. So, um,
[Doug]: Sand traps, when they refer to like sand trap that gives it like a whole new, the trap part, gives it a whole new, like, you know, meaning behind that.
[Carol]: So, um, but look, you just, you have, you have to laugh at certain situations. Um, um, and it's important to have, um, and to really enjoy the game, like, yes, I can be very, very competitive. Um, you know, but I, I don't like to be under that kind of pressure, but Theresa was, I think what cemented our partnership because we are a partnership, I'd always say we won. I, you know, I never say I won. We won because Theresa is very much my eyes. Um, my guide and my protector, because, you know, if somebody hits a stray shot on his hand heading our way, she, she just pushes me out of the way, you know, or, um, uh, back in 2017, uh, I was very heavily involved in organizing the Irish Blind Golf Open. And, um, and then I was taking part in, in the competition as well as organizing it. So that was, you know, I wasn't getting much practice in and, uh, it was, it was tough going. And I remember, um, the second day of the tournament, I, I just seem to have three bad holes and I just thought, I'm going to lose this. I'm losing this and trees, are she just, it's her actions that speak louder than words? She doesn't say anything. She just, um, between the ninth and the 10th hole, she just pulled the boogie up in front of a tree. And she just said, I'm leaving you here for a couple of minutes to do what you need to do. And she knew he knew what that meant, that what would happen then of course, I burst into tears and I've got, I have to do this. I can't go back into my daughter and my mother and say, no, I had it so close because, you know, I was in the lead at the time. And I just knew I had to really put my heart and soul into it. And yeah, I, it, it was the winning clinch because if Theresa hadn't done that for me. Uh, given me that moment to release all my stress. Um, I certainly would've carried on playing bad, but it was a game changer just to have that release and then hit the 10th hole and hit it biting and running home to win the cup.
[Doug]: I love how you've, you know, you've taken golf, which to me as an outsider, seems like the ultimate solo sport, and really like made it like a team sport in a sense.
[Carol]: Yeah. It is a team sport, you know? Um, well, especially when you, when you have, Usher syndrome, you know, or even visual impairment or, you know, I think it's, it's, it's not a solo sport. You, you, your mind game has to be absolutely intact. And the only way that can be intact is when you have the support of others around you, because it really isn't, it's, you might be so low in hitting the ball, but everything else in, in that golf game is, is to do with everyone around you and having that positive impact and making sure your, your mental game is intact.
[Doug]: Well, um, let's get back to the winning part of it. Cause it sounds like you've done your fair share of that. What have been some more of the, uh, of your personal highlights,
[Carol]: Um, with golf?
[Doug]: Yeah.
[Carol]: Um I went on to, uh, well, before the Irish open in 2016, I actually, uh, won my class in the Austrian blind golf open. And that was a little bit of a challenge because I went from Dublin to Boston and then, uh, because my, a very good friend of mine had died. I flew in for her funeral. Um, and then her funeral was on the Sunday. And then on Sunday night, I flew over to Austria and then, uh, went straight into competition Tuesday and Wednesday. And, uh, yeah, I, I won my class and that, that was very special. Um, then the Irish opened, uh, in 2017, the British open in 2018. And then, uh, this year I've been selected for team Europe for going to, sorry team America, you're going to lose. We're gonna, team Europe and team America are playing at the 25th Phoenix cup in Scotland in September.
[Carol]: Um, and it's an international disability golf. So, um, it is my understanding that I'm the only visually impaired, uh, lady golfer. Um, I know that the captain is visually impaired, but I, I don't think there are any other visually impaired golfers in the, uh, tournament. There are all different types of disabilities, um, being represented in this tournament. So it's going to be really special experience. I, um, to take part it's the equivalent of the Ryder cup. So that's, you know, I, I played in a, uh, in an Irish team against Scotland and the Celtic cup a few years ago, and that was a really incredible experience, you know? Um, so yeah, I'm really looking forward to the Phoenix cup in September.
[Doug]: That's really interesting. So in, in that, um, in that tournament, um, is there a certain way in which they like account for the diverse spectrum of disabilities, of people with disabilities that are playing, or is there, is it just, how does that work?
[Carol]: There'll be a people without limbs, there will be wheelchair golfers, there will be people with intellectual disabilities, all, it's a very inclusive tournament, which, which is what I absolutely love. I have no time for, uh, exclusive, uh, tournament. I prefer anyone that can join anyone that can play in a tournament that that's my cup of tea. Um, I, I, um, actually have something very, very promising and time to come. Um, there is an organization that for blind golf, but it's only for a certain type of visual impairment. So my type, anything with tunnel vision, they're not eligible to take part in their tournaments. So, um, I, I don't like inequality. So, and as I say, I never looked at the problem. I look at the social. So I'm in the process of working on a solution, white men. Um, so if anyone is interested in playing golf, you know, do so now, because there's something very exciting to come in, uh, the next couple of years.
[Doug]: Well, you're, you're certainly inspiring me to like, uh, go to the driving range. And I feel like that's like probably one of the few activities that's like acceptable right now in Los Angeles. So maybe, maybe I'll do that this July 4th weekend. Cause there's gatherings are certainly not going to be an option, but I'm wondering, you know, with this time with about the 10 or so minutes, we have left, I'd love to also talk more about the advocacy work you're doing. We've certainly touched on that to some degree, but can you tell, can you tell me a little bit more about that?
[Carol]: Yeah. Um, you know, Ireland, like I've said, just earlier, um, deafblindness, isn't recognized as a unique disability and because of that, there is no unique, uh, or what would you say there's no care pathway or people with, um, with deaf blindness. Um, and so this needs to be addressed like at the moment, the way, uh, I manage my healthcare as you know, I, I go to an audiologist to make sure my hearing levels are, are okay. And then I go to a retinal specialist, you know, to look after my eyes. So I'm the one that has to process the information that both, uh, sectors of the, um, audiology and, and, uh, ophthalmology. Um, I'm the one processing the information and then having to kind of make decisions about my own, like, well, what am I going to do about cochlear implants as an option, or, you know, I, there's nobody in the health, uh, sector helping me to coordinate my care, uh, for, you know, as usher syndrome, it's a progressive disease.
[Carol]: And, um, usher syndrome is the most common form of, uh, deafblindness in the working population. So even though it is a rare disease, it still needs to be taken care of. And, um, so my advocacy works around that, um, as well as creating awareness and reminding, uh, people at all levels, um, even children teaching them to be aware of, of people who, uh, uh, visual impairment or deaf blindness or even deafness. So I try to, um, I'm not exclusive about Usher syndrome. I just tried to create, create awareness about, you know, hearing and sight loss. Um, other aspects of my advocacy as well is I would love to see, um, a patient registry, but usher syndrome. And, and I'm working on that at the moment, um, with some really lovely people in America. Um, and, uh, this, the importance of this patient registry is to, to take care of all the, uh, aspects of him with usher syndrome, that's, uh, hearing loss, sight loss. And for some people, they have a loss of balanced. So we need a registry to find everybody on this planet, and then we can promote research. We can inform governments, national governments, um, about their policies and a health education, um, work practices, you know, without this information, we, you know, we can't expect, um, the national governments to actually understand what we need to be able to function fully in service of that in society. So that's, that's, um, another thing, um, I've just completed a summer school, which, uh, is centered around European, um, rare disorders, uh, and, uh, that that's very important work, um, to be involved with because, you know, with, uh, clinical trials and drugs that are, may come on stream, uh, to treat some aspects of, of usher syndrome, um, they have to come through for approval. And I would like to be able to advocate and say, hang on a minute, you know, this isn't right. You know, and I make sure that our patient community is, is, uh, treated safely and with respect and, and, and also to make sure everything is accessible, uh, for communication, um, for medical leaflets or explaining trials or anything, to make sure that all aspects of a medical trial or a drug product is, is communicated effectively, uh, for people with deaf blindness to understand. Hope that makes sense.
[Doug]: That makes a lot of sense, you know, just to back to the, when you're talking about getting the government to understand, and just getting other people to understand, you know, so much of ad gives his advocacy work in any lane is really getting people to truly understand in a way that like affects change. Right. I can imagine with, um, you know, uh, something like deaf blindness, which is a fairly low incidence compared to a lot of other, uh, a lot, a lot of other things people advocate about that there's maybe a lot of people who don't know anyone is deaf blind, who has never really heard about, uh, you know, heard directly from someone who's DeafBlind, what is the process like and how difficult is it to get people to just really, truly and deeply understand and empathize with your position and with the community before you can even start talking about various things that you would like to change policy or otherwise?
[Carol]: Well, I think, uh, you know, you just start off very basically, and just, you know, and it's, it's, it's, I I've actually spoken in front of a, uh, uh, government committee, uh, back in 2015. And that's when I started my, uh, campaign to get deaf blind recognized. And I just, you know, this is just a simple opening dialogue is close your eyes. You can't see anything, but your fingers in your ears, you won't be able to hear anything. And I think it's just those just that little moment can, you know, and then you give examples what happened to be, can't see, or hear a little baby crying, you know, simple things. Um, because after all, all these people in, in government, in politics, they're all human at the end of the day. They're not superior to us, but we just need to bring them back down to the basics and just say, what happens if you couldn't see your hair, your baby crying, you know, some simple, simple little things.
[Carol]: Um, and, and then you just, you explain, uh, what I just explained about what Usher syndrome was. I explained what my challenges were or in that I have to take care of my, um, I have to take care of my, uh, health, you know, I'm managing, you know, what my audiologist and my ophthalmologist are telling me, I've nobody to advise me it just giving me examples. And you know, what, if you show just what it's like to live, that's, that's all the message really, you need to convey. I mean, you can come along with statistics and data, but at the end of the day, these people are human and you have to get to them. You have to communicate to them at a very human level and tell them what you need, because they're not going to know what you need. You have to tell them that this is what we need in order to be able to function fully in society, to participate in society, because we have equal rights to participate fully in society.
[Doug]: I, you know, I love, I was just taken with the simplicity of that last part. You know, advocacy can include so many things and get somewhat complicated with dealing with various entities and different policies and different politics, but just boiling it down to, you need to tell other people what you need. Becausse they're not going to just know what you need is really kind of like the heart of it. And I just, that kind of echoed in my ear when you said that part, because it really is in a lot of ways that simple, right? And then it's just...
[Carol]: Well, yeah, you, you know, we be the solution, not the problem. Yeah. You know, because you're the expert, you know what you need, you you're, you have the solution, they don't, they didn't, they've no idea of what it's like. And, and so therefore, whenever, if you are advocating at your local government level or with any organization with your workplace or your school, all I'm saying is when you're going to say, listen, this is missing. This is what I need, you know, be the solution rather than be the problem, because, you know, they, they just don't know what to do. So you're the expert, you're the only person that can be the expert in this situation. Okay.
[Doug]: I love that. Um, and with kind of the remainder of the time we have here in the last few minutes, I'd love to talk about the topic of, you know, you, you really eloquently took us through your personal journey of, you know, first just thinking you were clumsy, not knowing about your diagnoses, to finding out about it and having it really change your life in kind of almost manically wanting to do all the things at once that you might not be able to do at another time. Um, and then having that, like panic, as you described it kind of combined with some other great loss you experienced in your life, ultimately gift you with this much more, uh, present and grateful place from what you, you live. So obviously you've had quite a journey yourself. A lot of, you know, obviously, um, deaf blindness has played a large part in that, but now as someone who's, you know, obviously the, you know, the deaf blind part of your life is really just one part of the many different things that you've already shared that make up your daily life as a mother, you know, as a daughters and caretaker of your mother as a golfer and as an advocate and all these other things you do, what's it like having this obviously really, um, diverse life versus dealing with other people's perceptions and perhaps of wanting to, of being incapable of seeing beyond say the deaf blind part of you, or having to deal with that, how would, how would you speak to that?
[Carol]: Well, I always say I don't let my usher syndrome define who I am. I am me at the end of the day. And usher syndrome is just, dictates how I live and how I communicate. It doesn't dictate how I am as a person. Um, and, and I think, um, if anything, I, while I appreciate people's sympathy, like, Oh, poor you, I, it makes me want to work harder more to kind of prove I am normal. I am human. I am, I'm no different to a fully sighted and a fully hearing person. I have no different, we were all the same, you know, it's, it's where humans at the end of the day. And, and I just like, we have the, we all have the same experience, even though some of us see some of us, don't see some of us here, some of us don't here, we can all feel the rain on our face. We can all feel when we have our water and our soap in our hands. We can all feel that that does make me different from anyone else. And that's something I wish I knew when I was 20, 21, 21, uh, in my earlier years. I wish I knew that. Um, and I wish I was aware of that instead of being this panicked, Oh, I got to do this before I go blind. I've got to do this. You know, I, uh, yeah, all I just say is, you know, if, if, if you're trying to make somebody understand that you're not so different that yes, get blind, just meet makes you communication different. It doesn't make you a different human being just say, feel the rain on your face or feel the sun on your face, or you're all in sunny country. Yeah. Right.
[Doug]: The sun might be more applicable to us in Los Angeles, maybe the rain a little bit better for you in Ireland there. No, but I love that so much. And, you know, thank you so much for sharing that and certainly have so much more, I'd love to speak with you about we're at time today, but I hope so. I hope you'll come back. Maybe you'll, we'll get to connect after your upcoming tournament and hear how that goes. You know, now, like I don't, I can't say this because it's July 4th weekend. I can't say that I'm rooting for you because that would just be bad timing, but I will say, maybe secretly I am, and I'm certainly wishing you all the, all the best in that upcoming tournament there, and certainly would love to please do let us know how that, how that plays out.
[Carol]: I will. Absolutely. And thanks so much for everybody to tuning in, and I'm just want to say thank you for finding me and connecting me to, to everyone that's tuned in this evening, enjoy your holiday weekend, and I will see you in the fall. So we say, autumn. I will see you in the fall, after the tournament.
[Doug]: Absolutely. And do you want to, just for anyone who's watching right now and might want to, you know, follow your journey or know more about you, is there a good way to connect with you?
[Carol]: Yeah. Look, um, you will find me on Facebook. Just send me a message first, because I I'm very careful who I make friends with, but I would love to be friends with you. Send me a message and just say, you heard me tonight and, uh, and you send me a bit Facebook request or I'm on Instagram, CarolBrillIreland and I'm on Twitter, @CarolBrill. That's it.
[Doug]: Awesome. And I also want to say that, um, do you know Donna McGlinchey? She said she knew you. So Donna, who's watching right now. Hello, Donna. She, when she saw that we were going to be speaking today, she was really excited because she said she had the opportunity to meet you. Um, she's uh, in Northern Ireland and she's also been someone who's been an amazing supporter of this and tuned into all our episodes. Uh, so she she's watching right now and, and, and says, hello.
[Carol]: Hi Donna.
[Doug]: Well, again, thank you so much, Carol. We'll certainly, I'm looking forward to connecting with you again soon. Thank you everyone. And thank you everyone who joined us today, again, just a quick recap. If you're watching on YouTube right now, right after this broadcast check out on our homepage, there's a, uh, already up there is a reminder for our upcoming live stream on July 16th, that's going to be this amazing live stream of The Feeling Through Experience and also in celebration of ADA 30. So that's going to be great. Um, if you're watching on Facebook, make sure you head over to youtube.com/feelingthrough subscribe and set a reminder as well for that event. Because it's going to be great. And it's, that one's actually only going to be on YouTube. So for our Facebook watchers, make sure that you check it out over there. It's going to be fully accessible, like we always do it. And uh, yeah. How about everyone have a safe but enjoyable July 4th weekend and we'll see you next week. Bye everyone.