麻豆社

Louise听 0:05听

I'm Louise Halling, I'm just getting onto my stairlift which is a massive part of my life. I guess you could see that I have a love hate relationship with it. Especially with those beeps. I need it but I don't really want to need it, I suppose. What else? So I'm a therapist or counsellor. I'm a mum. And I've been married to Mark for nearly 17 years.

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I was diagnosed with type of muscular dystrophy at the age of 19, which makes it 23 years ago now and the first thing that happened was that my left calf muscle wasted and since then, you know a lot more muscles have followed. It's just the nature of the disease. Basically. I鈥檓 just gonna sit here for a minute. I don't really think of myself as someone who has a disability really. But that is what I am. And strangely enough, and this is true. Like disability obsesses me, 24 seven, and yet, actually, I don't really want to talk about it, despite appearances.

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I find a lot of focus on sickness, illness, chronic health, pain, disability, I find it boring. And I don't know if it's just a defence mechanism or something where I just shut down. But I wonder if actually what it really is, is that it's in my mind so much that I can't take any more. I don't want to spend my life reading about it, thinking about it, listening to it. And fundraising for it go into support groups to talk more about disability. Oh my god, even that word is like, completely finishing me off right now. I'm just so bored of it! My goodness, talk about something else just change the record. Right That's it.

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Catherine Carr (Producer)听 2:13听

This is walks like a duck. Episode One - The stairlift.

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Louise听 2:25听

Come on get your socks on

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Jacob听 2:27听

*singing* get my socks on, where are my socks

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Louise 2:31

You鈥檝e got those shorts on back to front, get them round.

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Jacob 2:38

It鈥檚 because of that, the label is at the front. I get really confused.

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Louise听 2:44听

Get a move on. Brush your teeth laddy. Come on.

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I have to think very carefully about what's upstairs and downstairs in the house, to have as few stairlift trips as possible. We鈥檝e timed how long the stair lift is to get from the bottom to the top. And it was 40 seconds. I mean think about that. How many times do you want to be forced to sit down and travel up a stair for 40 seconds up and 40 seconds down every day?

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Jacob 3:20

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40 seconds? I鈥檓 surprised, I thought it was slower

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Louise听 3:22听

I try to use the time to think. Did you? Yeah, you want to attach a turbo boost, don鈥檛 you. Well, we both do really, that鈥檇 be amazing.

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Louise听 3:34听

We might even need a warmer coat today. I'm just gonna find it. Right goodbye you two.

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Bye.

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Mark and Jacob

Bye.

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Louise

Have a good day.

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Louise听 5:02听

My Tesco shop was due to come 11 to 12 and it's 10 to 11, and I'm just at the point of putting some clothes on and going downstairs. I've heard some clattering outside. And sure enough, the Tesco man is here and he's unloading. Oh man, that鈥檚 the door. This sort of thing like I know it's stressful for anyone if they're basically standing there naked and someone comes to the door, but you just chuck something on and run down the stairs and you're done. For me it's like oh my gosh, are you kidding me? Like I just wasn't ready - I鈥檓 talking fast because I鈥檓 trying to say all this before he actually gets here. As I go down and he鈥檚 got to wait, he probably thinks I鈥檓 out or something. But hopefully he'll see the note on the door which says basically that we might be slow to answer the door but oh my gosh, I just was not ready for this. And now I'm in my dressing going and kind of embarrassing Okay, hang on. Here goes.

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Louise听 5:59听

Hello. Hi. Sorry, I wasn't quite ready.

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Delivery man

You want me to bring it in for you?

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Louise听 6:03听

Yeah Could you bring it in. Bring it right through, I'll just get this door open. Just pop them there. If you could put them sort of high up for me to unload.

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Delivery Man

Yeah that鈥檚 fine, I鈥檒l start unloading it for you.

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Louise听 6:21听

Okay. Oh, thank you. That's good.

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Delivery Man

All right.

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Louise

Thanks very much. Cheers. Bye bye.

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Louise听 6:48听

The was a bit unexpected. He was very nice though. And obviously good on them for being early.

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Louise听 7:09听

When I did get downstairs, there was a parcel in the porch, which the postman had delivered, it's actually really sweet because he does that for me. He is such a lovely man. One of the things that has happened quite often is because I do a lot of my shopping online and I mean really, really boring things like whether it be, ah I can't even think, like cleaning stuff or shampoo or I mean everything. I get my prescription online. And so the postman, he has the sort of ongoing joke that, Oh, you've been at it again, or you like you're shopping, don't you? Like, you know, he鈥檚 just being friendly, but it makes me feel like he thinks I'm some big spender who's constantly ordering like a Gucci handbag and Jimmy Choos and 鈥榟ere she goes again. She's been spending her money鈥� and it鈥檚 this ongoing joke and I have to go 鈥榟ahaha鈥�- I have to laugh you know it鈥檚 quite funny, but I just kind of think do you have any idea that in that parcel is my fibre supplement? Or, like there's a there's a PE T-shirt for sports day in that bag, woohoo she鈥檚 been shopping again! You know, it's the sort of thing that maybe I'm actually think a lot of people probably buy these things online now, but I guess a lot of people might also just pop into the shop for them but not me, because why would I do that where they could have it delivered to the door and going around the shop is like a mammoth, enormous, exhausting, ridiculous experience. So yes, it's funny when your life is judged from the outside and people don't always see what's really going on. Ah, yes.

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Anyway, I'm going to have to put the freezer stuff away at least. And then I have to sit down with a cup of tea. Right.

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Louise听 9:30听

Okay, despite the circumstances, it felt like a good time to get my phone out which happened to be in my pocket to record this. My voice is probably sounding funny because I'm literally flat on my back. Because I've fallen, in the kitchen. It鈥檚 so stupid as it often is. I went to walk out of the door and I kicked the sort of, What do you call it? the side of the door, can鈥檛 think of the name of it is, because I'm not I'm slightly shocked. And I just, my knee gave way because my, my leg just can't handle it. I'm just starting to turn round now because I'm uncomfortable. It鈥檚 a hardwood floor that we have. Oh, and so yeah, I just went right down. My knees just sometimes that's what happens, if something knocks me my knees give way. I tried to grab near the doorframe, that's what the word is. And it was the doorframe that I kicked and then I tried to grab the door, but there was nothing to hold and I just went down, right onto my bottom. I've learned fall well, but you just get shocked every time because it's not expected. So I'm crawling on the floor now because I can't just get up.

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We've got breakfast bar Chair that I鈥檓 now, holding on to, just to get up. Just gotta get myself up. But my legs always start to shake a little bit after a fall, not majorly but just you know, that way. It's just a shock.

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It sets me back from a minute, so I just have to stop and calm myself down and just say it's okay. You know, I haven't broken anything, I haven't hurt myself. Well, I probably have hurt myself slightly, this kind of thing can slightly knock my back out without me even realising in the moment and just gives me a bit of a bash, you know I might have a bruise on my bottom but mostly okay it's not as bad a fall as sometimes have, but oh man鈥�

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Louise听 11:34听

So I just thought I would do a recording of me getting ready to see some of my clients and I'm just going up on my stairlift now which you might be able to hear. It's quite a long ride.

*laughing* That just sounds so wrong. And all I really need, is a really supportive comfortable chair which Mark has moved up to the spare room for me.

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I鈥檓 Just sitting down now, I'm getting my tripod out. And what I do for my job is that I am a counsellor. And I get to meet all these really interesting people. And I have the genuine privilege of walking alongside them in their pain. And it's usually very different to mine. We all have a different story and a different struggle. And, you know, it feels like such a gift that I can work at all and earn money, and that I can make it fit around school hours. I feel like I'm also able to, in a small way, make a difference to other people's lives. And I think that for those of us with disabilities and health problems, you can really feel like it's very insular, and you feel like you're not really contributing. It gives me a real sense of purpose. Yeah, I think that's it really for that now, so I better just switch off because the call is in a couple of minutes.

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Louise听 13:32听

*Singing Tomorrow is a long time by Bob Dylan*

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Louise 听15:14听

I鈥檓 feeling a bit down this afternoon. It's partly just because I've woken up from a daytime sleep, which is never a good time for me. I was going to get up and pick Jacob up from his street dance club at 4pm. But Mark said he would go which is really brilliant. Just means I don't need to rush up I can just kind of slowly wake up, which feels a lot better. But if you're feeling a bit down, just the last couple of days, it's partly because it's been really rainy and windy and I'm a bit scared in the wind that I'll get blown over. Although ironically, Mark loves the wind because it means that you can go kite surfing or sailing or something. So, we have a bit of difference when it comes to the wind. But I'm pleased for him, they can go out and really just blow the cobwebs away, because he loves it. And we do try to encourage each other to do things that we love. One of my things is creativity and I go to a life drawing class. I went last night and it was great, I loved it. But I the place that I have the class doesn't have a disabled toilet, which is basically fine because I do use just normal like female toilets but the best way for me, is if I leave my Walker outside, because they're usually quite tight spaces female toilets, so usually I leave it outside and walk in and I went to use the loo and I just found it really hard to get back up. And I'm finding it increasingly hard to get up from the seating position and just makes me feel really rubbish. Such a basic thing. Just to eb able to get up. It makes me scared. Not being able to get up. It wasn't so much that I thought I'm totally stuck on the toilet. And I can see the funny side of that. Knowing me, it鈥檒l probably make some great hilarious tail to tell people which I do, because I like to laugh. And you got to laugh. Man I have laughed. I do laugh but it's not so much just the toilet. It's just the sort of freedom of getting up and down. And I mean, I can get up and down off a chair that has arms, you know, and if there's something to hold or grab, like a grab rail. And in our house in the toilets, we've got higher up toilets, they're normal toilets, but they're just a bit higher. And obviously, we've got grab rails and everything, but it's just such an effort like just like, I can't really describe it. I鈥檝e got wasted muscles, right up the back of my legs and into my glutes, and you need a lot of strength to get up and down off a seated position and it really got to me last night when I just thought it鈥檚 so hard to get off this toilet. I had to grab hold of the toilet roll holder, tried about three times to get up and it's not like I was in a panic and knew I would get up eventually, I just had to slow down and say it's okay but these are just such basic functions you know?

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I would give a lot have a day off. I even just think if I could swap with someone for a day. like just swapped with someone so that they could know how bad it feels. I don't wish it on them. I wouldn't wish it on anyone for more than 24 hours but, I could have it. Oh my goodness what I would do, I would stay up all night. I would stay up all night and good dancing in heels. Like I literally wouldn't sleep because I'd have the energy, just imagine, and

I would just do the normal things like no, actually, No, I wouldn't. I'm going to say I would go to the supermarket but you know, I would not. Go to the beach and skip down the beach and just go dancing. That's what I'd love to do. And just go for a ride or maybe climb up a mountain. I mean, I would have a lot in 24 hours. Like a bit of warning, so I could invite all my best people to do it with, including Jacob and Mark obviously.

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It's kind of a dream though. It's not really real is it. This it's real. It鈥檚 not easy. I'm not gonna pretend. I count my blessings. Since I know, that I'm not living in Syria. And I really am so mindful of the things I'm thankful for, the riches that I have. But joy and pain go together. Don't they. Joy and the pain, they do. You can't separate them. And if you want as Bren茅 Brown says if you want to feel one, you've got to feel the other. You can't have one without the other unless you numb them all. And that's no life at all.

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Okay, I'm gonna get out. I'm gonna make myself a cup of tea. I'm going to take a painkiller.

And then a gorgeous boy, boys actually, a gorgeous little one will walk in the door and his gorgeous face brings me joy. And I'm really lucky.

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Jacob 21:19

What do you want to record now?

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Louise听 21:22听

I鈥檓 listening

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Jacob 21:23

Can you shush for a second now, I want to see if it鈥檒l pick up, what I鈥檓 eating.

Louise

Yeah that鈥檚 really gross on the radio listening to you eating. What are you trying to see?

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*Jacob chewing*

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Yeah I鈥檓 sure it鈥檒l pick up on your delightful eating. So Jacobs had like, snacks when he got home鈥�

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Jacob

Quite a few crisps and some fruit pastels

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Louise 21:47

Umm very healthy today, not. Broccoli was in your packed tea. Mangetout peas were in your packed tea. Cucumber. Yeah you basically have not stopped eating, and your still eating and it鈥檚 basically bed time.

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Coming into Jacobs room. Draw the curtains, and I have spent the time, when Jake has been at cubs, sewing a badge onto the kickboxing uniform

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Jacob听 22:11听

and taking badges off

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Louise听 22:14听

So today at cubs?

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Jacob听 22:15听

And so we were doing, we were like drawing a hedgehog meal and a drink. And then you know what he did? We were also learning about the things they can eat and can't eat.

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And then he added all the things they can鈥檛 eat.

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Louise

What sort of things did he write then?

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Jacob听 22:36听

That was like chips, cake, Vodka. And then do you know what?

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Louise

What noise is that you're making with that recorder.

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Jacob

These are some ways Hedgehogs can die. They can be poisoned, drowned, burnt, squashed, chopped or mowed.

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Louise听 23:06听

Oh yuck. Hedgehog death. It's not nice. It should just naturally be鈥�

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Jacob听 23:09听

One time Isabelle鈥檚 dad was mowing the lawn, and hedgehogs nose 鈥� chopped off.

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Louise听 23:23听

Awww. Oh no that鈥檚 really sad!

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Right, let's get these in the wash. Just pop that on and lets go do your teeth. Teeth? I鈥檓 not gonna come through to brush your teeth. Do you want to take the recording yourself? Go and brush your teeth. Can have a chat.

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Jacob听 23:39听

Hello people! *Making Air guitar noises* That鈥檚 just my absolutely brilliant air guitar. I'm one of the best in the school for air guitaring. *more noises*. Most people think it would be sad that mummy's disable and it is very sad, but there are quite a few advantages. Okay, the stair lift is fun, I love the mobility scooter and cutting queues. Once we went to the Tower of London and there was an absolutely colossal queue to see the crown jewels, but then we got to the cut the queue and it was actually, like people at the back probably had to wait at least an hour and cutting airport queues, Oh, just a brilliant thing that is.

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Louise

*laughing in the background*

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Jacob听 24:49听

I love playing around on speedy, that鈥檚 her walker. And her crutches are good toy machine guns.

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Louise

*More laughing in the background*

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Jacob听 24:58听

Yeah, they're just very helpful. It is very sad an all. But as I've said, there is many advantages. Back to my air guitar! *lots of air guitar noises*

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Hello people and good night. I'm handing back to mummy Halling, on the scene of my bedroom.

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Louise

*More laughing *

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Jacob听 25:27听

Mummy, what do you have to say?

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Louise听 25:37听

I have to say that you鈥檙e genuinely hilarious and you actually make me laugh out loud several times a day, every day which is absolute joy. Classic. He's such a great kid. Most of the time.

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You鈥檙e certainly funny. Right. So here we are, I鈥檝e climbed up to your bed. Your beds quite high up isn't it? Right let's do some reading. I'm actually quite enjoying this myself. I鈥檝e lost the page we were on. You were on page 36鈥�

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Catherine Carr (producer) 26:19听

鈥榃alks like a Duck鈥� was recorded by Louise Hallling.

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The Two producers were Jo Roundtree and Catherine Carr.

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It was a Loftus media production for 麻豆社 Radio 4.

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All music and the singing were also by Louise.

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