When The Words Away Went (Stroke Survivor Documentary)

[Music] This afternoon, what this doing this afternoon? Maybe practice a little bit more of your vowels. Yeah. My name is Julie and I've had two strokes. My stroke has... this... Has... I've been full of anger, anxiety, fear. Being here on my own and seeing it it's it's... It's blown my mind. Because the... the... [sigh] [Music] Okay, let's go, come on. When I'm actually sitting painting I'm not in the room. It gives me a sense of freedom. I just disappear into it. I forget about everything. You

feel kind of human again. It gives me relief for a while. Tom made it very clear that he was not looking for a relationship. But yeah I got my man. He was quite muscly and good-looking and had the chat. When he eventually got round to talking to me. Started calling me a moody cow. Which still stands now. It's an ice cream sundae for when me and Joanne worked in Mr Boni's. We never thought Tom was going to have two strokes. He was scared, I was absolutely petrified. We just didn't know how it wa

s going to go. It's difficult not knowing and also him not being able to tell me how he feels. It's horrible. My aphasia started two or three days after stroke. I thought I was speaking normally and it was Joanna actually first noticed the, the little stutter, and we called the nurse over and she said oh that's aphasia. And he got really frustrated because we're trying to work out what he's saying, we're getting it wrong, he's getting upset, we're getting upset. It's a challenge every day, throw

s up different things but you get on with it. Aphasia to me is it's like you've got a big dictionary in front of you and somebody's talking to you and you've got to flick through all the pages to find that one word and then find another word that goes with that word and it goes to make a sentence. And... and... and... and and then remember what that sentence is and say it. Sometimes it's like running a marathon and your head is just totally gone. I was tired. T-t-t-t-t-today I'm really tired. Th

is is this is how I suffer. Inside your head you're frustrated, you're angry, depressed, I lost all interest of life outside these four walls. I had to name my depression. Mine is a black dog. At the moment is it's sitting as a puppy but it grows and it becomes a snarling black dog and that's when I'm at my worst. Joanna has been a tower of strength, she hasn't let me wallow. Before stroke Tom never lifted a paintbrush, had no interest in painting whatsoever. It takes him to I suppose you could

see your happy place. He's having an exhibition of his artwork from his early days of doing art therapy to his most recent paintings. It's his way of expressing his journey through stroke. Um... [sighs] Everybody in the center said it was great and I should get framed and I did and I gave it to you Joanne for Christmas. So I didn't have to go and buy or anything. Nice and cheap, um, no I did buy her some stuff like Christmas, a desk. That means more though. He painted it without realising it was

going to be personal and I love it, so I've decided that it will be getting shown at the exhibition. I dinnae show my private side. Feels like it's um too quick. I don't know. Dad! I need you to come tie these balloons. I don't think we need any more candles. Yeah, yeah, we're done. [Singing] Happy birthday to you, happy birthday dear mam, happy birthday to you. One, two, three, well done, teamwork. I'll open the card first. Wishing you always know how very special you are, sending birthday wis

hes to hope... what's that word? That all your dreams come true and I love spending time together even though we fight sometimes you make anything possible if you try. Love Grace, Aaron and Oliver. P.S hope you enjoy your gifts. Thank you Grace. I like helping other people it's quite fun. It's hard to explain it's like because she's there but she's not there at the same time. I know she can't help it but it's just like a lot of pressure on me though. I'm done. That's really good that Grace. I ha

ve aphasia, well done, it's really good and what does it say on there? Stay strong. I don't think I would have thought as much of it didn't have family round as well. I think I would have give up and just like been in a bad place all the time if I didn't have Stephen and the kids. [Chatter] Before the stroke like me mam with two hands could do things, it was a lot less of a struggle. Her speech was a lot better. [Chatter] I was young so I didn't really understand it. We heard like a massive thud

I couldn't understand what she was saying. I was confused I didn't know what happened I didn't know how it happened. I was trying to say get your dad. There's no words it's just like noises and stuff, but Stephen knew straight away I were having a stroke. I went to hospital and then in and out of consciousness and I couldn't talk for six days and it was scary because I knew I wanted to talk but it was just not there. And all I kept doing was keep crying all the time. Started like being able to

say a couple of words, but I couldn't say like Stephen or Grace or anything like that, it was just like simple words at first. When I came out of hospital I remember Aaron saying I don't love you anymore mam, because he didn't understand what happened and didn't know how to take it, and that was one of the hardest things to hear your child turn round and say, I don't love you any more mam. You're the parent and you feel like you're a child again. I need some help I'm doing me... so I know what I

'm gonna say so we need a big circle in the middle then saying um speech because I want to go to a school and talk about my story and because I've had two strokes now I've got something called aphasia. Word... two minutes. So about me talking, so when I write talking you think, so it starts with a T A and is it the L, then it's a K I want to get the awareness out there because I remember getting on the bus and somebody thought somebody thought I was drunk because um I was like slurring my speech

and stuff and it's not a nice feeling. But they haven't told themself, obviously they have to live with it every day, so I think it's important young people know what aphasia it is because then if they see people they're struggling with the talking then they could then have a bit of understanding what it could be. A big scary thing but if it's not me who else is going to do it. You can tell you've done these in the past Grace. [Music] No, quiet, take it out your mouth. I was admitted to Queen's

Hospital on 21st December 2020. I had a heart attack and a stroke. There was a blockage in my left middle... Okay so we're going on a walk. I'm Steve, I'm Vicky, I'm Holly, I'm Bailey. This is Steve's journey. Two and a half years ago my partner Steve had a cardiac arrest, he came home but unfortunately 15 hours later he suffered a major stroke. He spent the next six months in hospital and a brain injury rehab to help him live as normal life as he can. [Music] I love West Ha... [sigh] Four mont

hs until we get married how do you feel? Excited. I don't like to class myself as a carer because I'm not a carer I'm a Steve's partner I do things because I love him I don't do it because I'm his carer. Life does go on and he can still be a dad he can still be a partner. We've been together for such a long time we just want to celebrate our relationship because we have got through really tough times, so we want to become husband and wife. Do you think you could put up with me for the rest of yo

ur life? Sort of. [Laughter] I love Vicky so much. I love you so much. Is it my cooking? [Laughter] What does Vicky mean to you? The world. Whoa I wish I was a little baby again, why, hmm cus I was cute then. Do you wish you was that small again? Yeah yeah. You wish you could do it again. Yeah. [Music] [Music] He used to do the night feeds. Who used to do the nappies? Me. You used to do loads, so hands-on. He gets upset about life before the stroke don't you. Hmm. It's all right to. Where are yo

u going? I'm going home mate. You know what the time is? I've got to make Loose Women, Loose Women starts at one o'clock you know what I'm saying. Clever boy, what's this one? Daddy. Clever boy, what's this one? Mommy. Clever boy. You've got to think about how far you've come since then. When you come home the whole family had to deal with his aphasia, we had to adapt to this new aphasia life. Aphasia means like, when someone has a stroke it breaks down their speaking ability. It makes their com

munication a bit harder don't it. Communibication? Communication. You said communibication. No I said communication. No you said... All right, it just makes someone's communication get a bit harder yeah yeah yeah no. Shoosh your mush. Give it to Daddy. I promise to love you and cherish you in the good times and in the bad times and... forsaking Just have to learn them a bit more but he's gonna and then he will be perfect. You do realize that if you can't get these words out on the day and we're

standing there with our family and you can't get your words out, they can't marry us. So yeah, yeah, I do. You'll just say I do. Yeah yeah. Feel confident? No. Oh you'll do it though. Geez Louise, Tom. How many years worth have we got here? Six years wow. Jesus wept man, that's one of your first ones isn't it. I think I think so, that's, that's a first one. Go put it over there. You've got a lot of trees. I love trees, I don't know, I don't know what it's about it's just trees and there's a tree

just beside us and when that starts changing into Autumn it's just a mass of different colours and it just it feels like it's a new birth. These two here. I got angry and in hospital one day I sent her a text message to my family telling them not to come and see me uh I didn't want anybody up. Just [ __ ] off completely but they kept on hanging around and again I just blew up. I'm ashamed even now. I was shouting at the nurses and shouting at the doctors, I was shouting at psychiatrists, I was

shouting the security. But at that time I was just, I wasn't me. They got me back to my bed, calmed down and I attempted [ __ ] that night. It was all going dark it was working it was all gone dark but what I seen was Joanne and the girls and my other kids um there and I stopped. I need a break. You alright? Yeah, we um We don't always talk about that one. That scared me in that picture Because I didn't realise quite how angry he was. To show it at the exhibition will give people a bit of an und

erstanding as to how he was feeling without being able to say how he was feeling. [Music] [Doorbell] Hello. Drink? No I'm alright, unless it's a rum and coke, no no no. I know he said that he like forgets stuff can you not have like have it written down but in his pocket. He wants to do it for me he wants to do it perfect for me, but obviously I'd rather him just enjoy the day and not get stressed out and worry. Like he's been practicing the first couple of lines at home and he knew them really

well when he says it in in his voice it's not, I call his stroke voice, his stroke voice right, but it's his old voice. Don't forget it's going to be lots of people isn't it. He ain't used to that is he. Exactly. I don't want him to on our wedding day literally see me walking down, getting emotional and then it completely throwing him, I'd rather him have had the opportunity to do a rehearsal, so he's done it once in front of our parents. So I've got a bit of a favour to ask, I want you to be a

part of like the rehearsal. If we go to my mum's where we're gonna have the party and say we've got my parents there, Steve's parents there and me and Steve to basically have a rehearsal with a wedding, but we need someone to play the like registrar, would you do it? Yes. Oh my God yeah I'm good for that. You do it yeah I'll do it. I'll get you some pizza. Sweet. I'll do that I love you so much like that. Oh yeah yeah. How long have you been with mum? Uh 15 years. [Whispering] When Dad gets it r

ight, do a little clap. Just stand there. I promise to love and cherish you. in... For. For better for worse... Do you want a hint? Yeah. It starts with keep. Er, keep. My... Keep my... My... Myself only unto you. Well done. Really hard. Right. How are you feeling? All right one two that's one two three four, just getting them organized. Are you feeling nervous? A little bit but I think nervous and excited because it's about time it got out there. Yeah so I think the biggest thing my stroke affe

cts is my speech and this is because this has because the rice... Um. You've got a dog in the audience, what do you think about aphasia, Mr? I'll start again the this has I'm alright the first couple of cards, then it seems like it'll go downhill a little. You did brilliant Julie. So I've asked that we'll go in at lunchtime all the children will be out, so we'll go in, we'll be able to sit down you can get comfortable and even if the worst comes the worst you can't get the words out, you forget

what you're gonna say, you're dead nervous, any of those what ifs, I've got this list. We know these are your key things that you want to get across. If I can't get the words in the right order or they come out I suppose that's I suppose it's what I face every day so if it happens it's probably a good thing and there it is so they can see it. That's fine. Hello [Chatter] You alright lovely? I'm good, how are you? [Sigh] That says it all. Uh it's getting real. Course it's getting real. My biggest

fear on the day of the exhibition is Tom being unwell. He may exhaust himself to the point of him not being able to enjoy the exhibition on the day. I got the phone call from Alex asking if I'm willing to sell anything. Aye. And are you? I don't know. Why not. I don't know. Because you didn't think they're good enough to sell. It could be that. The last couple of days have been a nightmare. I've been full of anger, um anxiety, fear. I've wanted to cancel this a couple of times in the last coupl

e of days, um because I'm scared of it. I don't know I'm just getting nervous now. It's only painting and it's only um artwork that it was meant to be just for me and showing it off to people I think I'm just a bit scared to... what see what you're capable of? So many people are coming they've seen the other side, when I was younger. Right, well now they're seing the other side, they'd be quite happy to see again. Or even the anger side at the beginning of the stroke. Right well they understood

that though. They only wanted to be there for you, you just didn't want to let anybody in. No uh. We just need to get you through the next couple of days. Grace, Stephen, Oliver, can you go in the living room so I can practice my speech and see if it's okay. If you've got any feedback for us I'd be grateful. My name is Julie and I've had two strokes. My stroke caused me to have something called aphasia. I can't control the saliva in my mouth... my mouth [Whispering] This. This... [Whispering] Ca

uses. This causes me to slaver. Have you got any feedback? Just be confident. Just don't sound like a robot. It's not too bad when you're doing it in front of like when you're by yourself and you're doing it but it's when you're with people, so I have to work on that considering I'll be with a class full of children Try that go on go outside put like 10 different chairs out and put like teddy bears on, you'll be able to practice actually speaking in front of some things that can't answer back. M

y name is Julie and I've had two strokes. My stroke... has... this... Can you hear her? No I have no clue what she's saying right now. Me either. This is like... this sometimes affects, this... Do you think she will struggle? I don't know Perhaps on the tree. Has it got batteries in it, so it hangs like that. We're doing the rehearsal in my mum and dad's garden, this is where we're actually going to have our party after we get married so it seems fitting to do the rehearsal here, but it's curren

tly like a building site. And then we like that. Okay got ya. Right. Yep. I'm so nervous saying words. You're fine, don't worry, you don't need to be nervous. Don't overthink yeah don't overthink you know the words just look at me and remember Bailey's always there for backup. Have you got the words? Yes. Good. [Laughter] Have you been practicing yours missy? No no no no no. I'll be honest straight up I don't do not know em. Will you help me? I'll help you yeah. Yeah. Putting a lot of pressure o

n yourself ain't you. Yeah a lot of pressure. Yeah, but you can do it. [Music] I'm actually getting um a bit emotional just being here on my own and seeing it it's it's, I can see the last six years and all these pictures and it's it's just mind-blowing. My name's Tom, I'm a stroke survivor, I'm a nervous wreck, um and I have aphasia. Um what you're going to see is my life for the last six years that um, through my paintings um yeah have fun, thank you. [Applause] That's us. Did you paint at sch

ool? No, I was a sporty guy. I played rugby, football, cricket whatever. Never painted until I had the need. Really yes excellent, I thought you may have done this at school or something like that. No art to me at school was drawing on the wall. Yeah that's my first one. That's my very first one that I did. Stroke's a bad thing but since my stroke I've I've done a lot more than I would have if I hadn't had stroke. I certainly smile more Doing this has brought him out of himself you know where th

ere's there's times he could be so moody and bad tempered and this and especially when he starts to do the painting again he's a totally different person. So I believe you sold a few. Seven. Seven. Flipping Nora. It's so so nice yeah and I'm glad he's willing to sell them because people want to keep a memory of them, but it just shows that they have had an impact on people and they want to put them on their walls I know um and that should help him feel better about his artwork. I hope so, I hope

so, is um I don't think it's quite hit him yet. I didn't think, I did, I didn't know how I feel about it people picking picking and paying but um I'm quite happy about them doing it it's um it shows me that um people do like them. There's people out there that like this. Some of them asking me did I do that at school have I done that before and it's no, it's just something that stroke brought on so I'm quite happy with that. Could you do me a favour. Go sit down. Yes please. All right. Before y

ou fall down. He's done well, nice to see everybody turning up for him so, it's been a good day. How are you? Are you nervous? Yeah. Yeah I can tell. How's your tummy? Now you're nearer the door. I just getting more nervous now. Hello. Hey, you okay, hello. Some of the kids are really interested. Are they? Yeah they're really looking forward to it. Good. There'll be quite a few. Don't tell us that. I don't know how I'm feeling. Right I feel a bit like a teacher. You look like a teacher. You read

y? I'm ready. Here we go. Should we just start. Yeah. So I'm Danielle, so we've got Julie here who's um our lovely volunteer and she's going to tell us all about her story and how aphasia has had an impact on her and then we're going to ask you can ask any question you like at the end, any question, right. So my name is Julie and I've had two strokes. My stroke has left me with something called aphasia. Aphasia is something that affects speech and language. After my stroke I had to learn to read

again and I also had to learn to write with my left hand a bit like you learning Italian or French. My children help me with my reading but they get very frustrated when they have to repeat the word over and over again. My son Oliver who is nine I listen to him read every night and I would be able I would love to be able to read to him. This is my biggest goal. [Applause] Has anyone got any questions? How old were you hen you first got your first stroke? My first stroke I was 26 and then my sec

ond stroke I was 29. Young isn't it. Um how did you feel when you had your stroke? Do people treat you any differently now that you've had a stroke? Do you know how long strokes normally last? How did your family help you when you had your stroke? Is there anything else that you struggle with? Why are you talking to like us now? How difficult was it to have to learn to write with another hand? Read again? It's still a struggle now, some days are harder than others, but I'm still here to tell my

story and educate other people, so that's what my plan is now going in schools giving talks, going to colleges etc. [Bell rings] Brilliant questions everybody thank you. Bless them. I'm over the moon I don't know. It was excellent, couldn't have gone any better. How does it turn into that thing that goes on your shirt and then it's just this long strip, weird. God you must have done a lot of practice then Grandad. I'm nervous. I'll promise to love and cherish you. Just remember, it's a rehearsal

, no big deal okay. Music] You're alright? You alright? Yeah yeah good. We are gathered here today to celebrate the very special love between Victoria Louise Coe and Stephen Daniel Smith by joining them in marriage. When Vicky asked me to officiate today it was an immediate yes. Vicky and Steve your marriage today is a publicand legal joining of your souls that have and legal joining of your souls that have already been united as one in your hearts. Today shows that love is more than words. We a

re here to celebrate that love with all of your closest family. Victoria would you please recite your vows. Help me. I promise to love and cherish you in good times and in bad, in sickness and in health for richer, for poorer, for better, for worse and... and forsaking all others keep myself only unto you for so long as you both shall live. Thank you. Steve would you please recite your vows. I promise to love and cherish you in the good times and the bad, in sickness and in health, for richer, f

or poorer, for better, for worse and forsaking all others keep myself only unto you for so long as we both shall live. I say Vicky I love you. I love you too. Well done. [Laughter] Not meant to kiss yet. Do you Vicky Coe take Stephen Smith to be your lawful wedding husband I do. Do you Stephen Smith take Vicky Coe to be your lawful wedded wife? I do. I now pronounce you husband and wife. You may kiss your bride. Now you can kiss me. [Applause] Hey, team Daddy. I'm really proud of myself. Quite e

motional as well I think it's been a long time coming. She's made the family proud and I just love ya. I love you too. Tom, you do realise that I could have sold this four times over today. Yes. But I was a good girl. And you could have sold it for quite a few quid. You better believe I could have. [Music] Do you want to go pick it? No. No, I want to blow a wish. Blow a wish yeah. I'm gonna go get it, let's get the wish. Could have got a holiday out of it. Could have done. But it's mine. Okay i

t stays there. Totally. What a day. One, two, three. Incredible thank you very much. Thank you too. Thank you. Breakfast is ready. I will go and wake the boys up said Mrs Lambchop to her husband Only unto you for as long as we both shall live yeah.