TRANSKRIPT 🔗
speaker-0: I'm Jane Simpson. For three years we've been sharing stories, asking questions, and bringing our MND community closer together. With over 50,000 downloads, thank you for being a part of these conversations. After losing my husband Robert to MD, I wanted to help others feel less alone. Here you'll hear from people living with MD, families, carers, researchers. And those working to improve care and find treatments. We make room for honest conversations, practical advice, and a little humour along the way. The podcast is proudly sponsored by Evercare, an assisted living brand that shares our belief in independence, dignity, and community. You can learn more about their range at evercare dot com dot au, or you can find them in Bunnings Warehouse nationally. I'm so thankful for Evercare's support of the and D community and I really hope that you enjoy today's conversation. Hello everybody. The Danahurst Drive is something that Neil Danahurst started ten years ago. We just had his ten year anniversary. And this time there were 230 of us and nearly 100 cars, I think. And many of us who attend Danahurst Drive have personally been affected by MND in our family. But I was looking around at the people who were attending with us, and there are people who join us who haven't personally, as in immediate family, been affected by MND. And one of those people is the guest that I've invited on today, her name's Debbie Drew. Now, Deb is from South Australia, normally makes the trick trick over to Victoria. Hope I don't get yelled at.
speaker-1: Yeah, breaking it.
speaker-0: Well, that's
speaker-1: Yes. Little glitch there by the looks of it.
speaker-0: did I pronounce that okay? Gula?
speaker-1: what? That is correct, yes.
speaker-0: Go meet yellow. Okay,
speaker-1: In a group.
speaker-0: I'm not gonna get confused. Now, Deb, whilst whilst Deb does know people who have had and D and she'll explain that to you, I just love the fact that there are people who want to come along and raise funds and raise awareness for us, not having been personally affected. So thank you, Deb, for being with us today. Deb, we always start off with Who is someone, not what they do. So who's Debbie Drew?
speaker-1: Debbie Drew is seventy one years old, live in Gua, have he been here for twenty years. and it's in Gua that my journey with losing fourteen friends and acquaintances started with and D and back in about nineteen fifteen nineteen fifteen.
speaker-0: You look pretty well.
speaker-1: I do don't I back in about twenty fifteen. I lost a a very, very dear friend. It it it took its toll, taken six years for for her to to pass with this dreadful disease. she was the longest friend other than Neil that I knew that that went sort of a distance. Everyone else was sort of twelve to twelve months to two years. it's just it's just a horrendous dri disease and it just just takes people so quickly. Jan that's on our was on our drive, her sister in law is in palliative care at the moment. Yeah. And that's suddenly just come on so quickly that it's taken them all quite by surprise.
speaker-0: Yeah. so how many drives have you been on?
speaker-1: this last one was my third. My first one is in two thousand and eighteen. I lost a very dear friend from the RSL with D. that was quite quick and her husband, he he wasn't dealing with it too well and I guess being in the Arisel and all your army mates, you sort of don't let your feelings be known. And I noticed that and I sort of inquired 'cause I saw a bit about Dennerhurst drive, so I inquired about it. said to Paul, We're going on a on a Denahoose drive and he said, I think I'm D out Deb. I said, No, you're not. You need to do this drive with me. So I got my nephew and another friend and the four of us hit the road and did the two thousand and eighteen drive and it was the best thing for him because he met everybody on the drive had something to do with D excuse me. And yeah, he grieved, he cried, he hugged and it was just he came back a different man after five, four or five days. socializing with people with the same problem as that he had and and it was a great thing for him. So I I wanted to do another one and then of course COVID hit and last year I decided only a couple of months before the drive that I wanted to do it again so got a team together and we hit the road and did the same again this year.
speaker-0: Did. a whole lot of questions in my head, but I'll just go through them one at a time. So how do you fundraise?
speaker-1: we do quiz nights, I've done a drag show with drag queens and which is always a hoot. and just going round to some of the businesses around and asking them to to sort sponsor us and we put a sticker on the car for advertising and leave that there for a year. do rapport. So yeah, it's been really, really good.
speaker-0: How many stickers do you have on your car this year?
speaker-1: probably about twenty.
speaker-0: Yeah, there were a lot. And tell our lovely listeners what kind of car you have.
speaker-1: I've got a Z Hill Fairlane, a nineteen eighty six Fairlane. well just has had restored. and she purred along beautifully. Yeah. See the little beast.
speaker-0: I was about to say she is the beast. gets you very nicely through there. Okay, one of my questions was, Can you remember the moment that you decided that you want to take action against MND? But I think listening to your answers from previously it's kind of might have been a bit of a rolling theme. Or was there one minute one instance you thought, cave I had enough of this?
speaker-1: Well probably Robin, my my dear friend that took six years to pass, probably the last twelve months was fairly horrendous for her and I just thought this is just it's just a horrible thing to for any family to sort of go through with their loved one and it's just and there's no hope. I mean if you get c I I'm a cancer survivor, all three of us in our car this year were cancer survivors. But when you're
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told you got the big C you've got a chance. You know, you do the treatment and More that more often than not we we get through it, but with D it's it's you're told that and and you just think, Well, how long have I got? You put up a huge fight but it's just not that easy and it and it takes its toll very quickly sometimes.
speaker-0: Yeah, it does. and for me, I I can't remember how many I've been on now, but f I think four or five. But when I the very first one that I did was not terribly long after my husband had died. And sitting in that car with those girls, I laughed and I hadn't laughed for a good couple of years. And I remember sitting there thinking, my god, I'm laughing. And it it was a panacea. And the other thing I love about it is what you said before about your friend. You don't have to explain yourself to anybody. You meet a new person. Hi, I'm Jane. Hi, I'm Deb. And they'll say wife and I'll say husband. And that's all you need to say. And people totally understand what you're talking about, where you've been, the journey that you've done. And it's extraordinary to feel that. Community in one place. And we often talk about it's a family because Neil started it with the family and the family is still on the drive. And it's just it is a great big family now, isn't it, Deb? Where we might we might and see each other from year to year, but the minute everybody sees each other, it's hugs and kisses and
speaker-1: It is. It's amazing. And you do, you get so involved with the family. It's it's it it is it's like your own family and in some times with a lot of people I think it's probably better than their own family in some cases. Because I know when I got cancer, my best friend, I virtually haven't seen her since because she couldn't cope. And people I hadn't seen for a long time came out of the woodwork and were there. So, it's it's a funny thing but we're with the denaher drive, it's I've done sixteen variety bashes and nothing's been like the Denah Drive. And it's just so embracing with with everybody with love and affection and and everyone's there for each other. last year we met the the old crackers and two of the girls there lost their husbands and not far before not long before they'd done the drive that sort of encouraged them to do it. Yeah. But, you know, we had a little funny thing going on with stealing a trophies and things but we laughed for four days and it was just so good and it was just it it it helped, and you say, laughter is is one of the best medicines. And the same this year with with Terry and Pa. they were so down and didn't know whether they would do it or not because it hadn't been that long I don't think since they'd lost their mum and and wife. And We just embraced them with a hug and and Carrie said to me on the last day, she said, I knew if I was feeling down or I needed someone or a hug, I knew I just had to find you guys and you'd be there for us. And and it was true. So yeah. my goodness. I don't know,
I lost it. Wouldn't even count them. It was like the Yeah, my Yeah. Well it was, 'cause Friday we had Hug a Cow Day, so everyone got lots of hugs. And Yeah. Yep. well the first w la last year we decided to do the the the drive. the final night was a costume night of s famous Australians or famous people. So I thought, well, 'cause we were travelling, what's the easiest in in costume wise? And I thought, the cash cow. Google's a cash cow. So we all got onto T Moon, got our little costumes and and took along with us. And then we got a
speaker-0: Some of you may observe that Deb and I are wearing different clothes halfway through this interview. It's not that we ran off halfway through and decided to change. It's that as Robert said, would have said, my internet failed to proceed. So it just died in the middle of our last interview. So I'm really sorry, Deb, and thanks for rejoining me again today.
speaker-1: More pleasure.
speaker-0: At least we've saved all of what we talked about the other day, so that's good.
speaker-1: It's that's that's the main thing.
speaker-0: It is. So We left off where you were talking about Carrie and Paul. Carrie would say to you, because they were feeling quite raw coming on the first drive, that if she needed a hug, that she would just come find you old cows and you'd give a hug. But that wasn't just for Kerry, was it? That hugging business.
speaker-1: Re one.
speaker-0: Thank you. So I don't can't count how many times you lot hugged me and the rest of the shadies. And every body of those two hundred and thirty people. but it was a lot and it's beautiful. You would just walk up to people and give them a hug. Why do you not do that?
speaker-1: Well, sometimes just people need a hug. a hug's free and a smile's free and and kindness is free and I think, well you walk up and see a little sadness in someone's eyes, give a hug. Yeah. Well give a smile. I walk down the main street and and Robin, my partner, she says, and people say hello and she say, Who's that? And I say, I don't know. I don't know. And she said, Well, why did they say hello? I said, 'Cause I smiled at him. Yeah. So it's infectious infectious.
speaker-0: I agree with that. And when I look at people, I look at people in the eyes. Absolutely. And they always smile back. And if I see someone whom I think looks particularly fetching that day, I will say, My God, you look beautiful today. Yeah,
speaker-1: Let's follow it. Yeah.
speaker-0: try it. It brightens up people's lives. It's amazing. It does.
speaker-1: Yeah. I guess in the the business I'm in you see a lot of sadness and and you walk down the street and you see someone that's sad and and if you know them you think, Well, you just don't know what's behind that sadness, so yeah.
speaker-0: You haven't you haven't told us as a whole what you do for a living.
speaker-1: we'd for a funeral fine.
speaker-0: Which which when Deb told me that the first time I couldn't stop laughing, but
speaker-1: I fell into the job by accident. I went in there to get a photo or get a a link to a a friend's service. Yeah. And got talking to Carla and said that I was interested in in working that industry and she gave me a job. So I've been there two years.
speaker-0: That's fabulous. You'd be very good at that job. You really would be amazing.
speaker-1: Well, it's it's respect. And I like to think everyone's treated with respect. a lot some places don't. I mean it's just a job, but with with Carla and myself and and the rest of the team it's it's a very compassionate job. Good. Yeah.
speaker-0: Thank you for doing that, Joe. So going back to what we were just talking about and what we were talking about the other day, what have the community connections that you've made, which really which is through Danaherst Drives, through the RSL, through your sponsors, what have they taught you about the impact of and D on an entire on on a family and on a community?
speaker-1: Well, I think since Neil's sort of come to the fore with with his diagnosis and sort of started the fundraising and into the find a cure for this beast, I think everyone now is a lot more aware than they were before. I mean, like myself, I s never heard of it. And all of a sudden Neil says, you know, he's got and D and he's and he's gonna fight it, which he did a marvellous job at. And And it started the big freeze and and people became far more aware of it. Excuse me. And a lot of people I knew and friends sort of suddenly over a period of time just suddenly seemed to come up with and D and I thought, My God, this is just like you know, amazing that that so many people have come up with it and then 'cause the community know a lot of these people and so the community comes to the fore and and and sort of comes in and helps you with the fundraising. 'Cause I know when I was doing variety they would because it's for children everyone gets involved, but MMD is such a horrible disease and and I think there's a lot of people that is affected by it, in some form. So they're quite happy to to come on board. It's like the Tomor Tomor Tomorrow Guild, the the gold crackers. They you know, two of those girls have lost their husbands and and their whole town's got behind them and I think it's just just marvellous.
speaker-0: It is marvelous. And I was reflecting on what you said about the old crackers. Hi girls over the weekend is that last year when we saw them, they were sad and broken. Last year. They were. And this year they were vibrant, happy, cheeky, had matching outfits for every event, you know. Laughing non stop. and That gave me so much joy just to watch them and the change in them was amazing.
speaker-1: Did they that's why we started our little banter thing last year with stealing your tukeys, which I gave mine back. but it just yeah, we had so much fun doing it. You know, we just laughed all the time because Jin Jinta would just look at me and she'd sort of do the fingers to the eye bit back and forth
to me, and I like I'm watching you and and then we'd just laugh and it just it did and it it made a big change to their life during the drive, as it has with Carrie and Park. Correct.
speaker-0: And me. And I'm sure there are many others.
speaker-1: Yeah. Yeah, absolutely. Everybody.
speaker-0: one of my things that I'm advocating for is for data for people with and D because currently we don't have a subset of data of who in this country has and D, where they live, where they worked, anything that may give the scientists and researchers some data about maybe any commonalities or But the one of the reasons why is that there are clusters around the country of people who have and D. And it would seem that Golwa, did I say that right?
speaker-1: yes.
speaker-0: Is one of those places because, you know, it's not a very large community that you have and yet you know fourteen people who have had and D.
speaker-1: Well not everyone was from here, but probably probably four or five. And
speaker-0: That's annoying.
speaker-1: 'cause and now f in the funeral home like I found we have a lady that's coming close to end of life, probably in the next few weeks. So it's somebody else in the area that that suddenly, you know, pops up that we know of that's got and D. So yeah, I guess I don't know whether it's it's something that's inside her body for a while and people move down here to retire and it it comes to the full. I I don't know. Yeah. But there's gotta be something.
speaker-0: We don't know. That's why we need to die.
speaker-1: Yeah. And these young ones now like Joy Arrow, he it just breaks my heart. Yeah.
speaker-0: Yes. And he's he's he's the only he's the one because he's in the media. There are plenty, plenty more who were in their twenties, thirties, forties who have this disease who who no one knows about.
speaker-1: And I think he's very, very bright.
speaker-0: Yeah, and and Nathan Charles too, who's rugby union who's just been he's only thirty seven. Yeah. Okay, let's get on to a fun bit for a minute. Not that I am diminishing any of those people in any way, shape or form. But it for anyone who hasn't been on the Danaherst Drive, explain what it's like, but the people, the atmosphere and the friendships. We've touched on that a bit, but give it us Because we think you're the queen of the drive. So give us your perspective on on being there. What's the vibe?
speaker-1: The first one I did in two thousand and eighteen. I was a bit con inconspicuous I guess, 'cause I was there for Paul. and but I had such a great time and got to meet a lot of people. I I actually met some of the footballers and one in particular, we sat down one night and I had no idea who he was until my nephew told me and introduced me and I had so I'll bet out a photo with him. And we started chatting and it was like he poured his heart out of it over a few things and I thought, This guy trusts me. Yeah. And some of the stuff some people I guess would go to the media or do something with it, but he he told me in confidence and it remained in confidence. Mm and I think everybody on the drive has a connection with somebody or everybody on the drive has a connection with everybody but it doesn't matter whether you're rich or poor or in the middle, everybody's on an equal path. and I think that's just a a wonderful thing because there's there's there's no judgment, there's no discrimination and all it is is love. Really, because everybody has that sadness of because they've lost someone with and D and everybody knows everybody else has this sadness and everyone just embraces everyone and it's just I don't know, it's an amazing feeling. This the second time I came on we we started a bit wild. But That feeling just yeah it just grabs you and you just want to do more. And I and I the friends, I can't wait to get back next year to meet the new friends I've met this year, next year. Each year you meet more people. Yeah. And and your friendships grow wider because I mean there's two hundred odd people, you don't meet all at once. But it's we've you know, we've just met some wonderful people and it's and it's and it's a beautiful thing. And I think everybody should do it. They should put it on their bucket list. Whether they know somebody or not with D it's something that they should get involved with because of the the the embracing of everybody. It's just it's a beautiful thing. It's I don't know, it's unexplainable. Really.
speaker-0: There's a saying about something about something these are the wrong words, but friends are just people you haven't met yet. So we know that we're gonna make new friends next year. We don't know those people exist at the moment.
speaker-1: Yeah, that's correct.
speaker-0: They're gonna become our our friends next year, yeah.
speaker-1: And it's great with the different coloured lanyards because somebody that's coming that's new. Yeah. So people beeline for them to make them welcome. And it's it's just yeah. It's and you do, you suddenly make new friends like like Car and and Kerry and and and the old crackers the year before. Well mo and my girls were were new last year. and so everybody sort of greets each other and and makes everybody welcome and it's yeah. It's like going home meeting the parents for the first time and And it's a great family and they just invite you in, it's just amazing.
speaker-0: It's absolutely true. I know. Is there a particular person or a moment from any of those past three drives that really stays with you?
speaker-1: Neil. Neil for the first two. He he's d he was just an outstanding man. And the first driver I did in two thousand and eighteen, he there wasn't a person he didn't say hello to or speak to that came up to him and I know, he he struggled, especially last year, but we didn't see a lot of Neil last year. But in two thousand and eighteen, the places we went and the people that were there, I mean there was hundreds of people who would come up. And he'd
shake their hand and he'd have a chat and he never turned one person away. And I thought this man, he's gonna go back to his bus or wherever he was staying and he would just be exhausted. And then two or three hours later he was back there doing it again and I thought, This man has just got an amazing salmon and and he cares about people. And that's that's what people take from him, I think, that he actually cared and he's got his own own problems that he was dealing with, but he still had time for everybody else, which I thought was outstanding. Very, very special.
speaker-0: Which segues really nicely into my next question is that Neil brought home the importance of having f putting the fun into fundraising.
speaker-1: absolutely.
speaker-0: And we honour him very well, I think, by laughing most of the time. But fundering fundraising does take time and energy and persistence. And it's hard work raising for doing the fundraising. So what keeps you motivated? What gives you the oomph to keep doing it?
speaker-1: just the fact of what I'm doing it for and and I wanna get back next year. 'Cause I want to make new friends and see the old ones. But it does. It it inspires you. Like now Jan's just like full on at the moment. Yeah. You know, she's going through her own grief. But she's thinking next year, what can I do? What can I do? And where can I raise money? Because now it's it's doubly important to her now because she's gone through it. Yeah. so so Guys.
speaker-0: This is Jan Lawrence from Lawrence. yeah, from Deb's team. yeah, she's had a close family member recently pass from and D. So yeah, it's gonna inspire her more.
speaker-1: Absolutely. It has. Yeah. Lynn said to me the other day, she said, she rings me every day. She's driving me nuts. This is Lynn from the other member of our team in Tasses. Yeah. So I said, calm her down. But she's she's just so keen now, she wants to
speaker-0: Good, we need that.
speaker-1: Well it is.
speaker-0: So what's the most creative or frankly the funniest thing you lot have done to raise money?
speaker-1: Check shows.
speaker-0: So tell us about them.
speaker-1: well, I started them back in two thousand and two when I had breast cancer to raise money for sick kids. 'Cause I thought when I had my first chemo I went home and I thought, that wasn't so bad And about five hours later, different story. Eating a bucket and it wasn't nice. But and I just I looked at Rob and I said, How do kids do this? 'Cause I know leading up to that the tests and the needles and and everything you go through. And then I and you tell especially a little one, little one that, this is all hacking but it's gonna make better and then they go home and they're sick. So I think that must mess with their little heads. So I started fundraising for for kids. I did canteen for a couple of years and I went to childhood cancer and did leukemia thing and then got involved with variety, so then a lot of it was variety. And I did took half a dozen drag queens and We got all dressed up as drag kings and we went off into the country and we did some country shows in Port Augusta and Kabawi and Mount Gambier and but we left the money in the town. Like Mount Gambier we did it for the the children's ward at the hospital and Port Augusta we did it for cancer chairs in the hospital and Kaba we did it for women with breast cancer. So and then we had so much fun. we didn't know whether we were gonna get lynched in Mount Gambia or not, but
speaker-0: It's it it's bringing me Priscilla Quinn of the desert vibes actually.
speaker-1: And then yeah, it was quite interesting 'cause two days before the show I'd only sold about twenty eight tickets and I thought we had booked the Palae where we in two thousand and eighteen we had a big lun dinner there. And I thought, my god, and we got out there and the place was rocking. There was I dunno, two or three hundred people there. And I thought, Where'd these people come from? And it was Yeah, it was everyone was too scared to go and all of a sudden they must have decided at the last minute to go, I don't know, but it was a blast and we raised five thousand dollars for the children's children's water at the new hospital, which was fantastic. So Yeah,
speaker-0: That's amazing.
speaker-1: that was really, really good. Yeah. That was probably our most exciting one 'cause we thought we might get run out of town but we it was really, really great and the town embraced us, which was fabulous.
speaker-0: Again, Queen of the Desert vibes. Totally. Hey, Queen. Yeah, you're a queen again. Alright.
speaker-1: No. I'm just adorning Joe Blow that peers.
speaker-0: Yeah. And a queen. Okay. So I want to wrap this up with why what would you say to someone who's sitting there thinking about it? I'm also I'm I'm also gonna share this with our drive group because I want them to hear it. And they might want they may have friends who are thinking of doing the drive but haven't quite committed yet. So so two, what would you say to those people who are thinking about doing it because they have a connection with and D. But then again, people who have no connection with and D, which there are people on the drive who've never met anybody with and D, but they come on the drive and they absolutely freaking love it. What are you gonna say to them? Why should they join us? Why?
speaker-1: Because of the the the family connection you get with the Danahers, that that that just blows me away that a family like the Danahers that are going through their own grief and their own problems can put themselves out there to the community and just to make things sort of tell a lie of to to to raise money for the drive and to find a cure for D. And And the companionship and the love and the smiles and the hugs that you get on, everybody needs that. So they do if you've ever had something on your bucket list and you wanted to do it, you've got to add fight and D to it and do the drive because it's
just something very, very special and they'll never ever come across something like that again in their life. So I think just to sort of emphasize what it's all about and the companionship and the love that you feel and the embracing of the Denaher family and you do, y I got in the lift the other night after Sat on Saturday night party and Terry Danaher's in there and he we all been to the lift and he just stuck his arm around me and said, We're the family, mate, we're the family Yeah and I thought and it was real. It wasn't just something he said. But
speaker-0: No, I made
speaker-1: it was came from the heart and I thought, We are family. Mm. So I think everybody everybody deserves to be part of the Danaher family and to go out and do something th that's fun. And you're gonna make new friends and so they should just put it on their bucket list and get on board. ASAP. Because you don't need any special car, you just hop in your own car and grab a couple of bills and do a four days bill trip or a four days we're trying to get some bulls for our cows, you know. He said the rock from forty wings, well you could bring a car of bulls
speaker-0: Yeah, but their own separate car, not in your
speaker-1: actually no they gotta do the wrong thing.
speaker-0: Let's let's not get messy here with boys and girls in one car. No, no.
speaker-1: Fine.
speaker-0: Nelly, you made me forget what I was gonna say.
speaker-1: So
speaker-0: sorry. I know what I was gonna say. Is that on the last trip we raised over one point one million dollars. And then so I think that was very good when people are saying that they're under economic stress but they're still very generous to us. And last year we did about the same. And then yesterday Fight and D released their grant rounds. I don't know if you saw that in the media yesterday.
speaker-1: Amazing.
speaker-0: Yeah. And what we what what we all do on the drive contributes money to those grants rounds. So, that's the bigger picture that we see.
speaker-1: That's fantastic. Yeah. I was I was amazed when I saw that and I thought, it's fantastic. Yeah. Because it's like Adelaide, we've got our own little research centre at Flinders and and they struggle and they and they said last year when we went through with Peter Trainer, if it wasn't for Ford D, they wouldn't exist. Correct because they wouldn't they'd put so much money into their grants, to get equipment and to help with the the the girls doing their one of the girls was she was doing a thing with little tiny worms. They only have a year a week's lifespan and she's trying to extend their lifespan with with tests and things. So the smallest things sometimes can turn to be the greatest things.
speaker-0: It's mind blowing going to the labs and seeing what they're doing and it makes you f it fills you full of hope actually.
speaker-1: It does. That makes sense. And you can s and you can see what your money's you're raising money for and it's going into something special. Yeah. And it and it's actually happening. So yeah. We just need the right outcome at the end of the day.
speaker-0: We do, and I think it's getting closer.
speaker-1: absolutely. Yeah.
speaker-0: Well, I'm so grateful to you. Thank you for your time. thank you for being you. Thank you for your hugs. Thank you for making us laugh non stop. And for showing care and compassion because we do see you if there's someone who's a bit wobbly on the day, we do see you circle them. And it's beautiful thing to watch.
speaker-1: thank you. We try. It can be a bit trying too sometimes, but
speaker-0: Mate, you can be a bit trying sometimes, but
speaker-1: the
speaker-0: Gorgeous. So we'll be in touch, but I'm very grateful and thanks Deb so much for your time.
speaker-1: absolute pleasure. Thanks, John. Thank you. Lovely. No. See you. Bye. Bye.
speaker-0: Me on the Let's Talk MND Facebook or Instagram pages. The information on this podcast is not medical advice, and the music you hear is by a much-loved member of our family, John Hanley. Once again, thanks to Evercare for sponsoring this podcast and supporting Let's Talk MND. Their commitment to care and community helps make meaningful conversations like today's possible. Thank you.