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The Stairlift

Episode 1 of 3

An unflinching and sometimes funny account of living with a disability, told through the recordings of Louise Halling's everyday life. Today - The Stairlift.

My name is Louise. I’m a mum to Jacob, wife to Mark, and therapist and friend to many. I also live with a degenerative, muscle wasting disease - a type of Muscular Dystrophy.

A few years ago, my hospital consultant asked a medical student to describe my condition. “Well,” he said, “she walks like a duck.” After a stunned pause, my husband and I howled with laughter. While I doubt the hapless student received the same reaction from the horrified neurologist, his clumsy response provided the perfect title for this documentary series.

The premise is clear. I don’t see myself as a person with a disability, yet that’s what I am. I don’t spend much of my life thinking about disability, yet my mind is filled with it 24/7. I wouldn’t choose to listen to a programme about disability, yet that’s what I was desperate to make!

It’s because living a life full of dependency and loss, my voice - and the voices of others like me - are so often silenced, so feared is the mirror of human weakness that others see reflected in our bodies.

A year in the making, the audio recordings in this series skip from the micro - the exhaustion caused by picking up a box of dropped crackers (when my day’s energy must be meticulously budgeted) - to the macro, such as asking questions about our collective, fearful disregard towards the chronically ill.

Amid all of this, are the real, raw and sometimes amusing sounds of my daily routine - I do live with an 8 year old, after all! - and some personal reflections on the acute emotional and physical pain caused by my diagnosis. I've tried to be absolutely honest in a way that has occasionally been exposing for me, to tell you what my life is like living with a disability.

Epiosde 1: The Stairlift
It’s all about the love-hate relationship I have with the most amazing piece of equipment which I spend seemingly endless minutes on. Its whirrs and beeps are a constant soundtrack to the day. Down for breakfast and up after the school run to work in my office, down for the Tesco delivery and up for a nap. If I fail to plan the day properly, I have to make extra trips – wasting precious energy and infuriating me with its interminable slow trundle. We wish we could jet propel the thing, but even as it is, I couldn’t live without it.

Presented by Louise Halling, with thanks to her husband Mark and her son Jacob
Produced by Catherine Carr and Jo Rowntree
A Loftus Media production for tv Radio 4

Photo © Muscular Dystrophy UK/Chris O’Donovan

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28 minutes

Last on

Tue 24 Nov 2020 16:00

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Walks Like A Duck - The Stairlift - Episode 1 Transcript

Louise 0:05

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.

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’m 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.

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.

Catherine Carr (Producer) 2:13

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

Louise 2:25

Come on get your socks on

Jacob 2:27

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

Louise 2:31

You’ve got those shorts on back to front, get them round.

Jacob 2:38

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

Louise 2:44

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

I have to think very carefully about what's upstairs and downstairs in the house, to have as few stairlift trips as possible. We’ve 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?

Jacob 3:20

40 seconds? I’m surprised, I thought it was slower

Louise 3:22

I try to use the time to think. Did you? Yeah, you want to attach a turbo boost, don’t you. Well, we both do really, that’d be amazing.

Louise 3:34

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

Bye.

Mark and Jacob

Bye.

Louise

Have a good day.

Louise 5:02

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’s 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’m talking fast because I’m trying to say all this before he actually gets here. As I go down and he’s got to wait, he probably thinks I’m 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.

Louise 5:59

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

Delivery man

You want me to bring it in for you?

Louise 6:03

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.

Delivery Man

Yeah that’s fine, I’ll start unloading it for you.

Louise 6:21

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

Delivery Man

All right.

Louise

Thanks very much. Cheers. Bye bye.

Louise 6:48

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

Louise 7:09

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’s 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 ‘here she goes again. She's been spending her money’ and it’s this ongoing joke and I have to go ‘hahaha’- I have to laugh you know it’s 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’s 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.

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.

Louise 9:30

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’s 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’t 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’s 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.

We've got breakfast bar Chair that I’m 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.

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…

Louise 11:34

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.

I’m 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.

Louise 13:32

*Singing Tomorrow is a long time by Bob Dylan*

Louise 15:14

I’m 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’ll 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’ve 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’s 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?

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.

It's kind of a dream though. It's not really real is it. This it's real. It’s 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 Brené 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.

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.

Jacob 21:19

What do you want to record now?

Louise 21:22

I’m listening

Jacob 21:23

Can you shush for a second now, I want to see if it’ll pick up, what I’m eating.

Louise

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

*Jacob chewing*

Yeah I’m sure it’ll pick up on your delightful eating. So Jacobs had like, snacks when he got home…

Jacob

Quite a few crisps and some fruit pastels

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’s basically bed time.

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

Jacob 22:11

and taking badges off

Louise 22:14

So today at cubs?

Jacob 22:15

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.

And then he added all the things they can’t eat.

Louise

What sort of things did he write then?

Jacob 22:36

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

Louise

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

Jacob

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

Louise 23:06

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

Jacob 23:09

One time Isabelle’s dad was mowing the lawn, and hedgehogs nose – chopped off.

Louise 23:23

Awww. Oh no that’s really sad!

Right, let's get these in the wash. Just pop that on and lets go do your teeth. Teeth? I’m 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.

Jacob 23:39

Hello people! *Making Air guitar noises* That’s 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.

Louise

*laughing in the background*

Jacob 24:49

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

Louise

*More laughing in the background*

Jacob 24:58

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*

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

Louise

*More laughing *

Jacob 25:27

Mummy, what do you have to say?

Louise 25:37

I have to say that you’re 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.

You’re certainly funny. Right. So here we are, I’ve 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’ve lost the page we were on. You were on page 36…

Catherine Carr (producer) 26:19

‘Walks like a Duck’ was recorded by Louise Hallling.

The Two producers were Jo Roundtree and Catherine Carr.

It was a Loftus media production for tv Radio 4.

All music and the singing were also by Louise.

Broadcasts

  • Mon 6 Jul 2020 11:00
  • Tue 24 Nov 2020 16:00