Living With a Brain Injury: Havva's Life, Challenges and Triumphs

In this episode of Dis-labled, Havva takes us through a day in her life and shares her experience of living with a brain injury.

With her trademark humour and honesty, Havva talks about family, friendships, daily routines, the things she enjoys most, and some of the challenges she faces. It's a warm, uplifting conversation that offers a genuine insight into her life and personality.

00:00:00 - Start
00:01:14 - Intro
00:01:59 - The Good News
00:06:35 - Pavement Guest by Alistair Scriven
00:07:54 - Discussion: A Day in My Life - Living with Brain Damage 
00:26:53 - Final Thoughts

Project Managers: Andrea Rai & Phil Powell.

Editor: Phil Powell

Huge thanks to the National Lottery Reaching Communities Fund for supporting our Dis-labled podcast. Learn more about their amazing work: https://www.tnlcommunityfund.org.uk

All enquiries: podcast@communityfocus.co.uk
Website: https://www.communityfocus.co.uk/

Theme Music: Rastko Rasic & the students of Community FocusOther Music: Jazzy Frenchy by ⁠⁠⁠Benjamin Tissot

Transcript

Start

Phillip R 0:09

We're here for you Our Duncan A weekend with you. We're here for you! Hooray!

Gila 0:39

Community Focus is an art centre for children and adults with disabilities. We are based in Fabow Burnett, North London, and offers collection of creative and well-being activities for all ages. Gila.

Jonathan 1:04

Jonathan. Amia.

Havva 1:07

And Hava.

Intro

Jonathan 1:14

In today's episode, Hava shares a typical day in her life while reflecting on some of the challenges she has faced living with brain damage. One thing is for sure, she always appreciates life with humour, positivity and fun, which makes her not only a brilliant radio presenter, but also a valued friend within our group. Join us as Hava opens up about daily life, personal experiences, and the importance of finding joy even through difficult moments.

Gila 1:47

Has anybody got any good news this week?

Carol 1:53

Um it didn't really it didn't really happen this week, but happened like

The Good News

Carol 1:59

I think it was Sunday. I went to a cluster shop with Jonathan and we talked about some things. What did we talk about?

Jonathan 2:19

Well, we just had a lot of casual conversations about all sorts of sort of things, you know, just chatting about, you know, life and stuff, you know.

Carol 2:29

Oh do you mind if I say this? Jonathan. Jonathan was Jonathan was telling me about his chocolate chocolate obsession.

Jonathan 2:42

Oh yeah, yeah, I was, wasn't I? Yeah, no, well yeah, I was I was um letting Carl know the full extent of my uh my my thing with chocolate and uh Carol was uh shocked to say the least. Yeah, cuz what thing with chocolate? I was t I was telling I was telling her exactly sort the sort of chocolate that I have these days and the amounts I have, and Carol was very, very surprised.

Carol 3:20

He told me that he has like three meals of chocolate. Like I I thought that Jonathan, you you need to get off that obsession and start eating dark chocolate.

Jonathan 3:32

Uh no, dark chocolate is uh it's too bitter for me. Uh I've got I've got such a sweet tooth of dark chocolate, it just makes me go, uh, you know, it's so bitter.

Carol 3:42

You gotta give it a chance.

Jonathan 3:44

I have, and it just I just like milk chocolate and plain chocolate and stuff. White chocolate's okay. But you know.

Gila 3:52

Um Jonathan, would you have m milk, white, and duck all together, or would that not be what you want?

Jonathan 4:02

Good question. Uh under certain circumstances I would, yeah, if dark chocolate's got mixes of other chocolates in it, then yeah, that helps dark chocolate not be so bitter.

Phillip R 4:12

Jonathan, you say you you like plain chocolate. About helicopter. How about helicopter?

Jonathan 4:24

What does one say to that?

Andrea 4:29

Do you like uh chocolate or bubbles in?

Jonathan 4:32

Like an arrow.

unknown 4:33

Yeah.

Jonathan 4:34

Oh yeah, yeah, I love arrows, yeah, yeah. In fact, I prefer chocolate if it's got like some bits of biscuit in it or wafers, you know, something to give the chocolate a little bit more of a bit more of a twist on it.

Gila 4:47

Do you like your key? And for other one, it's do you like twist?

Jonathan 4:52

Uh yeah, yeah, I do, yeah. I I like I like yeah, I like both of those. Yeah, they're good.

unknown 4:59

Yeah.

Phillip R 5:00

You know, Jonathan, you say you like wafer. Do you waifer goodbye?

Speaker 10 5:04

Oh my god.

Jonathan 5:10

What are we gonna do with you?

Phil P 5:15

So has any kind of thing, Jeff have you had any good news this week, Haber?

Havva 5:19

What kind of news? Anything. Oh, I was doing my sewing and my um my iPad and I'd done it different. I've done it like a plat. You go, you go, you lift up and you put the string under and you pull it and it makes lovely plaits.

Phil P 5:41

So you're making a case for your iPad, aren't you?

Havva 5:43

Yeah, I've done it already, and I done the one for my telephone.

Phil P 5:47

Have you had any good news, Phil, this week?

Phillip R 5:49

Um well on Wednesday, I went out on Wednesday night. I went to a jazz thing at at the um in Millhill Broadway. Mill Hill Golf Club I went to, yeah, very nice it was. And we had a good time, had a very good time, yeah. I go there once a month with with with with my friends, you know. And um I really had a good time. Yeah, very nice. And I got I got I got I I got on a say singing as well. One of the bee gees. How deep is it up by the bee geese? It was an open mic thing, but very nice it was.

Pavement Guest by Alistair Scriven

Alistair 6:36

Pavement guests bad is the scribble. Episode five speculative arrangement. I hope you enjoy your Easter with trepidation and fortitude and excitement surprisingly. If it isn't recommendable, it will certainly be plausibly fortuitous, eventfully surprisingly. If it is without trepidation, it is commendable, unsurprisingly excitable, more or less excusable. If it isn't commendable, it couldn't be more of a surprise, unexcitingly less exclusively obviously intentionally. If not fortuitous on the trepidation, it will be more commendable obviously without trepidation, if fortuitous would also be commendable naturally by this description. The end I find this one a good play on words and um entertaining at the same time and um and and and and and the words can be powerful too. This one is neat but powerful.

Discussion: A Day in My Life - Living with Brain Damage

Havva 7:54

My name is Hava. My condition I got brain damage. This is my day my life.

Phillip R 8:05

Hava tell us a little bit about yourself and your condition.

Havva 8:12

I got hover, a man's condition, I got brain damage and I can't read and write because I can't read still. What happened really? My brother and me, we was born and we were twins. I come at first, they squeezed my head with the faucet so tight and I got brain damage. Mummy didn't know. She was in hospital and then the doctor told her I was got brain damage. Because my brother came out, he was alright. I got I'm the one who came at brain damage. Sometimes I get a headache and sometimes I get my head hurts.

Phillip R 8:51

How would you describe your condition to someone who has never heard of it?

Havva 8:59

I suppose my dish and I born like that and I can't pick up writing and I w I need help somebody teach me to read and write. I'm I'm slow as well. I can't I can't read properly. I got I got synthesis, I want somebody to help me to do you know to to to read for me because I can't read.

Gila 9:27

What does a typical morning look like for you, Hafa?

Havva 9:31

Mornings I g I get up, I f I feed the cat and I give my mum's tablet and I I get my tablet and in the in the afternoon I do something else. And I like doing uh singing a little bit. Mummy goes to go crazy a little bit and my cat he he likes it and he joins in.

Gila 10:06

Do you need any support getting ready?

Havva 10:10

I want to get ready for myself and I got I got Bitus because I can't eat the the I eat the right food, I can't eat the wrong food because I'm Bibetic. I had that and I was a little child and mummy t and mummy told the doctor I got barbetic because I didn't have it before, it does come by itself. And I take in my tablets. I take one night time, one one in the morning.

Andrea 10:41

So Havey, you know when you said that you can't read or write, when you were growing up, did anybody ever help you or give you any time to teach you how to read and write?

Havva 10:51

Nobody teached me. I didn't have that. I didn't know how pi people did not help me to do read and writing. I didn't know nobody else. I couldn't c I couldn't get some somebody 'cause I couldn't tell them 'cause I was afraid. I kept it for myself.

Phil P 11:09

And what about numbers?

Havva 11:11

Numbers is alright. I know my A B C D E F G H I J K L M P P Q R S T U W X Y Z. And now January, February, March, April, May, June, July, August, September, October, November, December. I didn't know it before. I done by myself.

Andrea 11:34

That's brilliant, Havan. That's brilliant. I done by myself. Have I, uh, when you were younger, did you get did anybody help you go to school? And did anyone teach you, help you in school?

Havva 11:46

Nobody teached me at school. I couldn't read and write. Because the the the cheater didn't want to did the one to know. They were doing the other children, not for me. I left out.

Phillip R 12:07

However, did we did you do you get frustrated because you got a learning difficulty?

Havva 12:12

Sometimes it gets rated because people don't understand I've got brain damage and I need help because I don't know my the m the money properly. I've got a problem with the money as well.

Andrea 12:24

So when you go to the shops and you need help, do you feel like no one's gonna help you d do you ask for help or does anybody help you when you're trying to pay for something?

Havva 12:34

I asked the lady in the counter, she can help me. She helps me with my money a little bit. And and she's very kind because she doesn't know I've got brain damage.

Phil P 12:46

But you've got to really trust somebody to do that, don't you?

Havva 12:49

I trust somebody in the counter, she knows me.

Gila 12:52

Have a in school? Do you have any help in exams?

Havva 12:59

I asked the teacher. She used to tell me off because she wanted me to do it by myself. She didn't want to help me because she wasn't interested. She was helping the other children. And she did not help me. And I got told off for that in front of everybody in the class.

Andrea 13:19

Didn't your um parents tell the teachers what happened to you?

Havva 13:25

I told my mum. My mum went she went crazy because she's not she's not supposed to do that to me and she done this to somebody else like that and she got told of. And then she started on her and then she started on me again. We start on each other.

Carol 13:44

What parts of your day are easiest or most enjoyable for f for you?

Havva 13:50

My part that is it these days. Um I like doing singing and I like doing the languages. I'm learning languages. Galli Mella, San Mella, Gallardoso, Manon Gasso, San Antonio Fernando. That that is Italian. I'm speaking Italian. Bongiorno Fernando Giondo, Clasionto Fernando Giante, Classionto Fon Italia from Bongiorno Fernando Giande. Classionto Fernando Classiante Gianni Fernando Giondo Fernandi Classi in Italy. Thank you very much.

Phillip R 14:32

What does it all mean?

Havva 14:33

That means Italian.

Phillip R 14:35

Yeah, but what does it mean in English?

Havva 14:37

Oh that's that's Italian, I don't know what English means. I speak German, I'm gonna speak German. No no no German Dunkers and Hagen, Dunkin' Sweden, Dunkishen Huygens, Hugenta Germany Gunnar Guna Dunkins, Hugenta, Dunkin' Hugan, Dunkin' Sweden, Hagen. That is Germany.

Phillip R 15:13

What does it all mean in English?

Havva 15:15

That means um that means German. I don't know what it means English. I speak Turkish now. Good night, Oskedinis, Ospodalus Welcome to Turkey from London, from Istanbul, from London. I'm talking from London, I'm talking Nasinus, Oskednis, Ospodalus, Zembrusinus, Nasengedinis, Ben London, and I'm speaking on the radio in in in London.

Phillip R 15:54

What does that mean in English?

Havva 15:56

That means good night, good morning, good afternoon, and goodbye. What are you independent with? Oh independent, I did by myself. All of it. They're gonna separate a care. And I didn't want it.

Phil P 16:19

They wanted you to have a carer?

Havva 16:21

Yeah, career, yeah. They wanted my money. I said no. What do you enjoy doing most? What I do most, I doing um I'm doing crochet and I'm doing knitting and I'm gonna start on crochet soon.

Jonathan 16:41

What parts of your day are the most difficult?

Havva 16:46

What's the part of the other day was unrecorded is money and and reading and writing. That's a hard one. I'm not very good at it. Maths and and reading. I need help for that.

Phil P 17:03

And you have to do a lot of jobs around the house and everything.

Havva 17:06

No, I done it with the hoover. I do the cleaning, I do the dusting and I wipe the table. Sorry, sorry. Sorry, sorry about that. And I do the I do the hoovering and I fix my mum's bed. Then I do sweep up and I do the cleaning and wash the the dishes, the plate for the cat. And I do the I I do the the the the dining room for the cat and I do hoovering and mopping. Oh sometime I get pain in my arm and sometimes I get pain in my back because I keep bending down all the time, lifting up my brother's shopping all the time, in my arms, and I put some cream. I get a bit tired in the g a little bit because I do all the housework and I go to bed a little bit. Sometimes I get headache a little bit. And my head hurts, my brain blaming hurts because I get pain. And sometimes I get pain in my back and my arms. I'm doing them all right by myself. I'm I'm I'm I'm troubled with the reading and writing the money. That's all. That's what I got a problem with.

Amir 18:17

Do people ever miss understand your condition?

Havva 18:24

People they don't take no notice, they they just uh ignore me. I don't like it like that. I've got I've got problems. I've got sensation and I'm not telling liars, I'm telling the truth. And then they're ignoring me. They don't believe it. And I to tell the other people they understand.

Phil P 18:45

Is that because you're quite is that because you're quite friendly and you like to have a laugh and joke? You always see the positive side of things.

Havva 18:53

Sometime I laugh, sometime I make a joke, sometime sometime I sing in the shop, sometime I sing on the bus, and the doctor doesn't say anything, and the people in the shop don't say anything, and people like it, and this and that. My songs.

Phillip R 19:11

Do you ever feel lonely at all?

Havva 19:14

Uh sometime I get lonely, I got my cat, and I got my mum, I got my mum with my cat. Sometimes I I get lonely by myself, I I I keep quiet, I do my singing and and and I don't I don't bother nobody. I get lonely, I got my cat. She's a lovely girl. She's in my panionship. Yeah, but apart from your cat, meow.

Phillip R 19:37

Do you do you should get have people that that b that support you, you know?

Havva 19:44

I've got my brother to put me sometimes, and I've got my my mum to support me.

Phillip R 19:49

No, what I'm trying to say to you, if do you do cooking by yourself or does your mum help you?

Havva 19:55

No, I do the cooking, sometimes my mum does the cooking, sometimes I do the cooking, sometimes I do the cleaning, washing up and sometimes my brother brings the food. We don't do cooking the house. Because he tells me not to cook, he brings the dinner for us.

Carol 20:12

What do you like cooking?

Havva 20:13

I like Turk Turkish food. I like Turkish food. I cook Turkish food. Easy ones, not the hard ones.

Phillip R 20:23

What do you wish people would uh uh understand you a bit better?

Havva 20:29

I wish they understand me better because I do singing, I do acting and I speak different languages and this and that and I do something else I don't know what doing and sometimes I I sing for my cat. I like to sing you Italian song Bongiorno Fernando Classionto Mamma Lissimo Bongiano Classionto Mamalissimo Gonjano Bonando Classicanto Mamalissimo Bonjano Bongiano Mamma Lissimo Bom That's Italian song What does that all mean in English? That is an Italian song from opera. What does it mean in English? What's another one song mean? That is Italian song. It's from the opera from the from the film.

Phil P 22:07

Listen, she said she could speak other languages. She didn't say I speak other languages and I know what I'm saying.

Gila 22:18

Do you ever feel like you have to hide a marked part of yourself?

Havva 22:24

No, I don't put my face now. I don't put my face as k I I put my own face on it and everyone recognized me on the street. I could say good morning, good afternoon, how are you? Have a nice time. So do you lady have a nice time with your doggy?

Carol 22:46

What kind of support helps you the most?

Havva 22:50

Nobody helps me by that. I don't know I I d I do by myself. Uh I haven't got nobody to help me to say that because I do it by myself. I'm happy to do it by myself. It's easy.

Phil P 23:04

But do you have carers?

Havva 23:06

No, I've not got no carers. Mum's got carers. But because helpers help me, yeah, pink is helping me. I've got friends, yeah. I've got lots of friends.

Phil P 23:16

Uh community focus, you mean?

Amir 23:19

Community focus.

Havva 23:26

Can you use compass?

Phillip R 23:28

Focus, nothing.

Phil P 23:38

And what what help do you get from community focus? What support do you get?

Havva 23:43

Um from the teachers, from my friends, everybody, and I like coming here. This is very good, this is very funny. The cheaters don't argue with me, they talk nicely, they're very friendly and kind.

Jonathan 24:01

What makes your life easier, happier or more accessible?

Havva 24:06

I'd be happy, but my life as uh I I'm happy by myself. Uh I get I don't get I don't be sad, I'll be happy, and my life I I I get on my I'm I'm doing it alright by myself. Alright. I don't I'm sometimes I get upset sometimes. I lose my dad and lose my cat and I get over with that. I I'll do something things I I'll do. I like to get a job one day and I leave college. I like to work in the radio in in in the sh in uh upstairs in the radio shop in Wook Green. They've got radio upstairs. I like to work there for the time being and leave college to get a job one day.

Carol 25:03

Have you ever heard anyone tell you that you can't do those things?

Havva 25:08

No, nobody told me that. No, I've got I've got nobody. I need uh I nobody told me I I I can't do things like that. I've got no manager. I need a manager for singing and for acting and this and that. I need a job.

Phillip R 25:31

Do you ever watch TV at all?

Havva 25:34

Yeah, I watch TV, I like watching films, I like doing give me something to do and not to think about my cat and not not think my dad, and then I watch telly, I like watching films. Sometimes I do make tea for my mum. I like watching films. I never miss it.

Phillip R 25:57

What would you like listeners to to to remember after hearing your your story?

Havva 26:05

I like to listen to me, my story, and and thank you and I love you all and and to the radio and the podcast and to help me to get I like to do something else one day and I move on for my future.

Jonathan 26:29

Hover, are you happy with your day?

Havva 26:32

Yes I'm happy my day, yeah. I'm not sad, I'm happy my day and thank you listen to me on the radio from Hubber. I love you all.

Phillip R 26:50

Final thoughts.

Final Thoughts

Phillip R 26:53

Our final thoughts are about Hubba. I find it very interesting, you know you're you're you're you're marvelous, you're Hubba. And I thank you for for for speaking out to us all. Thank you.

Phil P 27:07

Thank you, Phil. And how do you feel about telling your story today?

Havva 27:12

It's very good. I joined it today. Thank you very much. You listen to me on the radio, and I'm very appreciated. Thank you having me.

Jonathan 27:24

Yes, it's nice to know that you're making it through the day and getting whatever happiness you can get out of life.

Carol 27:31

Thank you. I found your life very intriguing, and especially when you mentioned uh that you didn't ha you didn't education in school wasn't very good for you, but like you overcame it with like your confidence. And I I love how you said like with with your confidence that um you don't really care what people think of you and you just like you go for it or whatever. Yeah. Thank you, Carol.

Havva 28:02

Thank you, Carol.

Gila 28:04

Hafa, you spoke really, really well and you open up so beautifully, and now I understand your condition even more. So thank you for telling us that. Don't let anyone put you down or just you or anything like that, because you are really really special to all of us.

Havva 28:28

Thank you, Gila.

Gila 28:29

I like you so much.

Havva 28:30

You're my best friend. Thank you, Gila. Well done, everyone.

Phillip R 28:35

Well done. A week in review. We're here for you, yeah. Hooray Hooray Hooray Hooray.