大象传媒

Louise 00:05

Oh come on. Ahhh, I hate dropping things. Jacob can you come help me please. Just dropped all the crackers and stupid packed lunch鈥︹��Sorry. I鈥檓 getting annoyed. Thank you so much鈥�..pick that one up as well.

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Jacob 00:26

what is it again? That people say, don鈥檛 say the actual f word

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Louise 00:33

(laughs) 鈥�Oh, the Irish thing

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Jacob 00:35

as the Irish would say, ah feck.

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Louise 00:39

(laughs) I don鈥檛 think we鈥檙e allowed to say that on radio four actually.

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Ahhhh鈥�it's a small thing but somehow it just feels like it, maybe hit a bit of overwhelm with that happens, because it just is such hard work. Anyway, better get the radio on and get ready for cubs.

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Fx 鈥� Radio

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MUSIC

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Catherine Carr (producer) 1:11

This is Walks Like a Duck. Eposide 3 鈥� How People See Me.

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Louise 1:22

Okay, I'm just gonna explain what we're doing. Jacob and I are sitting, making things. you're gonna show me how to do it aren鈥檛 you because you鈥檝e been learning to make lizards at school haven鈥檛 you?

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Jacob

Yeah, card lizards yeah

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Louise听 1:39

So I was thinking about asking you a couple of questions. So one was about like, what you think mommy's strengths are and one was about what you think my weaknesses are like, like what things you get annoyed about or whatever鈥�..

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Jacob 1:45

Everyone's gonna laugh at this bit, but one of the things that annoy me is when you drop things, and it wastes my TV time.

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Louise 1:57

(laughs) What things do you erm love about your mummy?

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Jacob听 2:04

That you always respect other people. And you're very kind loving person.

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Louise 2:07

A kind and loving person? That's really lovely.

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Jacob 2:10

And you love reading books

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Louise 2:14

I love reading books. Yeah.

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Louise听 2:17

Erm, what thigns do you like to do with mummy?

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Jacob

Play games, do arts and crafts. So amny things.

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Louise 2:26

So what things do you find difficult or about mommy like weaknesses? Struggles, frustrations?

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Jacob 2:33

I get annoyed when you don't cope with me when I'm getting annoyed. Like鈥�and one things is鈥︹��Can I say one thing I like?

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Louise 2:43

Yeah ofcourse

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Jacob 2:45

You could say Sam likes, the stairlift.

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Louise 2:49

Sam is one of Jacobs best friends. What else about my disability, makes you feel maybe more painful emotions like sadness or anger or frustration do you think?

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Jacob听 3:00

I get sad when you can't do stuff with me, like when you couldn鈥檛 go to the new police show it made me really sad.

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Louise听 3:07

Yeah, because of my mobility scooter was in for a service and it was a bit of a rainy day.

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Jacob 3:13

Yeah I was quite sad about that

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Louise 3:21

Thank you. Thanks right you better get on and show me how to make a lizard鈥�..

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Fx 鈥� radio playing, stairlift noise.

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Louise 听4:08

Oh, I'm just having a really bad moment, I鈥檝e just come upstairs on the stair lift into Jacobs room, which, honestly a little while ago was like really, really tidy. And then Jacob bless his heart. He's an eight year old boy. And I'm also really delighted that he was desperately looking for a particular book. But I鈥檝e just walked into the room and there are books all over at the bedroom floor, so much so that there isn't even a proper alleyway for me to walk through. Of course I will ask him to come and tidy them up. But it's just you know, if I was able bodied, it would take me like two minutes. It would be done. Mild frustration over, but no, I'm looking at this pile and it's too hard and the mess is there and I cant actually get past the pile. So I mean it鈥檚 not going weel, it鈥檚 too well tonight鈥� I came up here to do a few things, some of which I am prevented from doing. (sighs)

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Louise 5:03

I remember once reading a book that was describing anger as a blocked goal- you get angry because your goal is blocked.听 Well my goal is blocked, okay? And I'm angry, and it's not anybody's fault. Well, it's not it's not fair either to take it out on Jacob, which I sometimes do because I'm human. And you see, this is the thing I have these people in my life who have got the hero factor, you know, that because you've got a disability and you're out there in the world and you鈥檙e doing all this stuff and you're coping so well with your terrible circumstances that you're such a hero. You're So Amazing.

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I have a friend that thinks I'm so amazing. And I'm not amazing. Well, I am amazing actually. I am amazing sometimes, but I'm never Ahh-mazinggg. And right now I definitely don't feel amazing. I feel tense, and I'm cross and it's one of those nights I'm just I feel low, I feel angry, I feel aghhhhh. But I'm really hoping to bring some inner calm from somewhere 鈥� and this is about being raw and real. This is not about me being this incredible human being that many people see me as, I'm not incredible. Breath鈥�

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MUSIC 鈥� Louise playing 鈥榶ou are my sunshine鈥� on the ukulele and humming

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Louise 6:53

I just had to record this because it was a classic life with a disability moment. We're having a few days away down on the south coast. Mark and Jacob have gone to play crazy golf, so I thought I'll go and find a caf茅. This is always a bit difficult when I've got the scooter it means that I don't have any crutches so if I park outside somewhere I have to walk on my feet. But the floor is really sandy because it's right beside the beach, and that makes me terrified because it's so slippery, so I'm already feeling wobbly, and then I realised that it wasn't table service, so I had to stand in a queue 鈥� but as I'm standing there I just look a fit and healthy able bodied adult woman, and so no one would have any idea that I'm just standing there with no aid trying not to fall over.

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Louise 7:46

And the guy was just really not very friendly and, I had to pluck up all the courage that I had to say to him when he got, he got me a piece of cake and a coffee on a tray, but the thing that's weird is that a lot of people haven't really heard of muscular dystrophy really, I don't think, and I just said, I'm sorry, I've got MS, and I don't trust my legs not to give way with the tray so would you mind lifting it over for me, which he did and actually he became much more friendly at that point, and it really makes me reflect a lot on hidden disabilities because actually in some ways I'm quite lucky that 99% of the time my disability is not hidden. As in you can see it, either if you pay close attention to the way that I waddle, or 鈥榳alk like a duck鈥� or if you usually see my walking aids, or my wheelchair, and people do work around that. If your disability is hidden, for example, if you have a stoma or something and you have to use a disabled toilet, no one sees that, or like autism where you might be really struggling in a loud crowded place like the one I'm in now, and nobody understands that - it must be so difficult to navigate that, to negotiate that to feel like, you know, sense that other people might think you're a bit of a fraud or that you're making a fuss, anyway鈥�Yeah, I'm now going to sit and enjoy my coffee and my cake and read my book whilst the boys play golf. And I've texted Mark to tell him exactly where I am and I said I'm actually too terrified to get back up.

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FX - caf茅 noise, chatting, background music

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FX 鈥� cutlery clinking, setting the table

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Mark 9:45

You鈥檙e not gonna put us on Radio 4 are you?

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Louise 9:48

So I might, you might have to hold it like that if you're going to speak

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Mark 9:52

Are you already recording?

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Louise 9:54

Yeah im recording it now. Well I'm interested in is, Ohhhh mark.

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Friend 9:58

Stop talking Mark, stop talking!

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Louise 10:00

so basically the people that I'm here with, I've known me for about, well obviously marks here, he's known me for a long time, but how long three years?

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Friend 10:10

Yeah. 3..

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Louise 10:11

Three and a half years, four years. These guys have known me only with a disability and I am the school mum that arrives with my granny walker to pick Jacob up. And they've also seen me at a festival with a mobility scooter, to which we attached trolleys to take the children in a train like fashion through the festival ground, and I may have had a little too much to drink, I was baisclaly drunk driving but anyway, I鈥檇 just love to know any thoughts that you have about how you see me. How you see me live with my disability. That kind of thing. There's a lot of giggling going on鈥�

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Friend 1 10:46

I worry that I don't understand enough about your disability if I'm honest, because I see you defined by your kindness, your generosity, your immense sense of fun, then it clearly has a huge impact on all aspects of your life, but I'm not sure I've ever paid it probably the due time I possibly should have done, to properly understand it and then better be able to, support you as a friend through it, there鈥檚 a bit of an apology for never really talking about it, it always seems like the secondary conversation we never need to have.

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Mark 11:16

Your quite articulate

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Friend 2 11:17

You are very articulate

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Friend 3 11:19

Yeah you鈥檙e too good with your words, no pressure!

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Louise 11:20

Good radio voice (laughs)

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Friend 1. 11:22

I've always felt like I've always wanted to say that鈥�.

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Louise 11:26

You鈥檙e one of the most aware friends I have actually, to be fair.

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Friend 1 . 11:31

That means a lot to hear back, I always think at some point, I'd love to talk to Louise about how I can support you more or be more understanding of some of the the frustrations or worries or concerns but there's so many other things we鈥檝e got to talk about! That we never get there

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Louise听 11:45

Plus its really boring for me to talk about that. I want to talk about other things

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Friend 1 11:52

Are you going to say something Becky?

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Friend 2 11:55

I don鈥檛 know. I never treated you any differenetly, I鈥檓 just sitting here now and I donlt feel like I need to ask you abot your disability听 - maybe that is because, not even because I am shy, but I鈥檓 just having a laugh with you and I am having fun and I don鈥檛 feel like it is a topic of converstion鈥�.

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Friend 1 12:15

the moment which I found, im going for it now right, it鈥檚 like the honesty card. But I felt really ashamed I hadn't talk more about it when we went to WOMAD and when you said how special it was that they actually allowed you to camp with friends. And that was a quite an interesting experience, for that whole weekend in the disabled area. The idea that in other festivals, disabled people wouldn't be able to be with their friends camping. It was a tiny little snapshot into some of the things you don鈥檛 even think about being difficult can be difficult, be that to put your hand up and constantly have an exception comes to bear and even the most casual and, what should be straightforward and happy moments in time, that was a bit of an eye opener for me.

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Mark听 13:00

It was great the disabled area there, wasn't it?

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Louise 13:02

Yeah, we got to be really close鈥�.

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(conversation fading)

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Friend 13:07

there are advantages and disadvantages鈥�

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MUSIC 鈥� 听You are my sunshine played by Louise

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FX 鈥� TV

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Louise 13:40

So I'm not sure if you can hear in the background but we've just put the TV on for Jacob, and Mark and I are just going out to our garden to have a sneaky hot tub. This amazing portable hot tub has been lent to us by some really kind friends. We've had it for a few weeks now, and it鈥檚 so good for my muscles cos they're so warm but also it's such a great time for Mark and I to chat to each other and, so going down the ramp on my walker which just sits out in the rain most of the time, towards the hot tub where we're going to get in鈥�..ok鈥�. just getting my plastic shoes off. Okay, good thing about this is I don't even need to use the steps because it's basically a bit like getting into a bath. I was about to say I can just put my leg over but (laughs) oh my the inuendo鈥檚 hey, they're endless. There we go.

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Louise 14:42

Mark鈥檚 just eating a biscuit. Oh that鈥檚 so nice. So鈥�Oh, look at that moon鈥︹��I can hear the birds still, which is nice.

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Right. I'm handing Mark the recording, but I just need to get closer to the microphone.

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Mark 15:05

Any excuse to get close to me

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Louise 15:07

yeah, absolutely.

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Mark 15:09

Do you want me to sing for you?

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Louise 15:11

No, I don鈥檛 think the nation needs to hear that鈥�

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Mark 15:13

*SINGING* when they get to the bottom you go back to the top of the slide and they stop鈥�.No?

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Louise听 15:17

They might put this on you know, whatever you say, its possible. And so yes, I just..

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Mark 15:23

*SINGING* wanna love you, wanna hold you tight and get teenage kicks right through the night.

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Louise 15:30

(laughs) This is what happens all the time in my life鈥�anyone that knows mark will know this as well. One of Mark's friends once described him as a walking iPod Shuffle. And basically you'll ask him a question about anything and he鈥檒l answer with the song, or he'll have to sing a song related to the question first, before you get the answer, and some people think it's, you know, quite endearing. But quite honestly, it's totally infuriating when you have to live with it all the time. But anyway, erm, as I was gonna say鈥�

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Mark 15:56

It would be considerably better if I could actually sing. That is a minor technical problem.

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Louise 16:00

That is an inconvenience to the listener. Certainly. (laughs). Okay, so as you know鈥�

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Mark 16:07

this could end in divorce.

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Louise 16:10

(sighs) Right, as you know鈥�

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Mark听 16:13

or at least separation.

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Louise 16:18

(laughs) Right erm鈥�As you know, I have been asking other people, how they see me, but I guess it's really interesting for me to ask you the question, and it's quite sort of vunerable as well, I guess for both of us, but how you see me in terms of my disability really, and how it affects you, as well really as a carer, as well as my husband.

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Mark 16:41

I was thinking about this actually while I was driving along today, (bird sings) that was a very loud bird. And I was thinking, it's hard. It's hard to watch you struggle. And it's really hard when I you see you, maybe do something that you used to be able to do, and now it's tough, now it's much harder to do than it used to be. I think they're the kind of the most disarming moments, those moments where the weakness is quite stark or the weaknesses is quite in your face. I think it's confusing too like it's hard to know, what's just life, and is true for everybody, and what's the experience of living with disability?

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LONG PAUSE

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It's hard to know what normal is, And what, what is tough about disability or is it just tough about having an eight year old? And all the kind of challenges that that comes with?

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Louise 18:25

I was just thinking about how when we first got married, which is coming up 17 years, makes me feel very old. But it's actually just that we were really young when we got married. Well, 25鈥�.

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Mark 18:35

child bride.

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Louise 18:38

(laughs) obviously, you knew when you married me that I had Muscular Dystrophy and that it is a degenerative disease. We both knew that, and I was affected to some degree at that point, but not significantly. We knew it would get worse, but obviously, nobody really knows what that looks like, and, and I just wonder if like you ever wonder if you'd made a different choice and I don't mean that In a kind of 鈥榳oe is me鈥� cos I know you adore me, and obviously would never want to be with anyone else. I know we have a lot to give each other but, I do wonder if you sometimes think what if I鈥檇 chosen a different life and I didn't have disability in the mix of it all I suppose鈥�..Yeah I suppose what I'm saying is do you ever think, I wish I didn鈥檛 marry you? With all the pain you鈥檝e brought me.

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Mark听 19:29

Well let鈥檚 just go for the light hearted easy question shall we? Rather talk about, well how do you find pushing a wheelchair? We'll talk about do you wish you鈥檇 never married me? Thanks Louise.

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Louise 19:40

Might as well go for it鈥�.I am a therapist!

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Mark 19:41

Nobody told me I was getting a therapy session in the hot tub. I thought I was getting asked a few questions.

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(pause) Bloody Nora.

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(long pause)

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Mark 20:01

I think I resent disability. I feel angry about your disability. Sometimes I feel angry that it limits us, I feel angry that you suffer. I feel angry at the impact it has on our family life. And yeah, I feel angry at the impact it has on my life as well. And I feel sad too.

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I think, I knew鈥�I knew when I asked you if you'd marry me that we just worked together. We were a good fit, and you seemed to kind of understand me and get me and so yes, sometimes a lot of the time, all the time, I wish that you didn't have to live with disability. I wish that we didn't have to live with disability, but I don't regret marrying you.

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Louise 21:11

Well that鈥檚 very reassuring (laughs)

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Fx - Water听

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Mark 21:21

I do think about a cure. I do think: I wonder what life would be like if there was a cure to muscular dystrophy, or even just something that made it a bit better and made you a bit stronger, and what impact that would have? I think I wish for it really.

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Louise 21:45

You wish for it to be different.

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Mark 21:51

Yeah. Yeah, I do. I worry, I worry about what life will be like, and I think about how your muscles have weakened in the last 20 years, and what on earth your muscles will be like in another 20 years, and I worry about how much that will limit our life, and how our life will be affected. I worry that our life will be very small, as a result. That scares me actually. The thought of, yeah, being incredibly limited scares me and I guess we already limited, and I struggle with that鈥�I struggle with the lack of spontaneity. I struggle with that constant thought when you try to go somewhere of, will it be accessible, will we be able to get through gates or find a place to park? Or whether it's knowing that actually, energy levels probably won't last as long as we'd like the day to last. I struggle with鈥� I guess there is just that underlying sense of disability being there鈥�

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Louise 23:36

I think what's also sort of interesting in that is like two things. One is that personality wise you're really spontaneous. So, you know, you love just saying oh, let's go and do this. So, you know, that's extra tough for you, but I guess I wonder like within that, if you would say in your experience, there's been anything about Muscular Dystrophy or disability that has been, I suppose what you might call, a gift - and I don't mean that in a cliched sort of way, but do you think there's anything about it that's made your life and our lives richer?

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Mark 24:16

Nah it鈥檚 shit.

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Louise听 24:22

(laughs) can you be a little bit more articulate

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Mark听 24:23

Come on, I thought I鈥檝e been doing quite well.

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Louise 24:25

You have you been doing brilliantly

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Mark 24:32

I guess Muscular Dystrophy has made us get on with things sometimes. We had to plan to do a trip a few years ago, like a six month trip, and realised that it would just be too much. But instead we did a couple of one month trips instead and thought, let's just make the most of doing these trips to crazy places, that might not be possible as you get weaker,

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Louise 25:00

Like to rural Africa is what he means.

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Mark 25:03

Yeah - I think maybe our retirement plan isn't necessarily what it should be, because there is, well, for me, at least a part of me that thinks Screw it. Who knows what life will look like? Who knows how life will be in 20 years time? So let's get on and live life now鈥�.

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Louise 25:24

Yeah, and we have done that quite a lot, haven't we?

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FX - Jacob on trampoline

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Louise 听25:30

Oh鈥�right, that might be the time to call it鈥�

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Mark 25:33

Now we've got about a trampoline in the background.

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I think we get by alright though. Like we do have moments鈥�. we do, we do manage well as a family. I think we kind of work out how we can do things and try not to get beaten by disability. But sometimes it is hard. Sometimes it does beat us, but a lot of the time, we have a lot of fun.

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Louise 26:08

Yeah. I think it鈥檚 true.

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Fx 鈥� water splashing

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Louise 26:17

(laughs) Now Mark is doing farting noises on his eye and under his arm鈥�.oh my word鈥�

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Catherine Carr (producer) 26:29

鈥榃alks Like a Duck鈥� was record by Louise halling, mark and Jacob. The prodcuers we鈥檙e Jo Rowntree and Catherine Carr. It was a Loftus Media production for 大象传媒 Radio 4.

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Louise 26:45

And here we go. We're taking off鈥�.

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Fx Hot tub bubbles

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Catherine 26:51

All of the music and the singing was also by louise.

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Louise 26:57

Okay, it's now dark and the moon is very bright and im starting to overheat鈥�

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Louise 27:06

Another fart noise. Marks trying to make me giggle (laughing) stop tickling my foot. Seriously my family

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MUSIC