Understanding Locked-In Syndrome: Causes, Effects, and Rehabilitation
Brain Stem Stroke And Locked-In Syndrome (LIS) is a rare and devastating condition that profoundly affects an individual’s ability to communicate and move. In this comprehensive article, we delve into the causes, effects, and rehabilitation strategies for Locked-In Syndrome, shedding light on this challenging medical phenomenon.
What is Locked-In Syndrome?
Locked-In Syndrome, often abbreviated as LIS, is a neurological disorder that leaves individuals fully conscious and aware of their surroundings but unable to move or speak. This condition is typically caused by damage to specific areas of the brainstem, which controls essential bodily functions such as breathing and heartbeat.
Causes of Locked-In Syndrome
The most common cause of Locked-In Syndrome is a stroke, particularly in the brainstem or the pons region. Other potential causes include traumatic brain injuries, brainstem tumors, and certain infections affecting the brain. Understanding the underlying cause is crucial for tailoring effective treatment and rehabilitation approaches.
Effects on Communication and Mobility
Individuals with Locked-In Syndrome face significant challenges in communication and mobility. They often rely on eye movements or blinks to convey their thoughts, using specialized communication devices to interact with the world. The loss of physical mobility can lead to muscle atrophy and joint stiffness, further complicating their daily lives.
The Emotional Impact
Living with Locked-In Syndrome can have a profound emotional impact on both the affected individuals and their families. Feelings of frustration, helplessness, and isolation are common. Providing emotional support and creating a supportive environment is essential for enhancing the overall well-being of those with LIS.
Rehabilitation Strategies
While there is no cure for Locked-In Syndrome, rehabilitation plays a crucial role in improving the quality of life for affected individuals. Physical therapy focuses on maintaining muscle strength and preventing contractures. Speech therapy helps develop alternative communication methods, while occupational therapy enhances independent living skills.
Assistive Technologies
Advancements in technology have brought about a range of assistive devices that empower individuals with Locked-In Syndrome to communicate and engage with their surroundings. Eye-tracking devices, brain-computer interfaces, and specialized software enable them to express their thoughts and connect with others effectively.
Caregiving and Support
Caring for someone with Locked-In Syndrome requires dedication, patience, and a comprehensive understanding of their needs. Caregivers play a vital role in providing emotional support, assisting with daily activities, and facilitating rehabilitation exercises.
Conclusion
Locked-in syndrome presents unique challenges, affecting communication, mobility, and emotional well-being. While there is no cure, a comprehensive approach to rehabilitation, assistive technologies, and strong caregiving support can significantly improve the lives of individuals with LIS. By understanding the causes, effects, and treatment options for this condition, we can work towards creating a more inclusive and compassionate society for everyone.
For more interviews on Locked-In Syndrome and related topics, please visit this YouTube playlist.
Note: This article is intended to provide comprehensive information on Locked-In Syndrome to improve search engine ranking. It is not a substitute for professional medical advice. If you or someone you know is experiencing medical symptoms, please consult a qualified healthcare professional.
Rev David Hazeldine experienced 4 ischemic strokes, the last one of which was in the brain stem and resulted in locked-in syndrome.
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Don’t Get Excited But…
Highlights:
01:41 Introduction
15:59 Why bad things happen to good people
24:10 God Faith & Locked-In Syndrome
31:55 An alphabet board and how it works
37:41 What is behind the why me?
42:57 How to ask for forgiveness?
48:15 Why did this happen to me?
53:15 Hardest part of rehab
1:02:39 Don’t Get Excited Butt…
Transcript:
Rev David Hazeldine 0:00
Now some people have been locked in like me, have survived, and they have no faith at all. These are very positive people. And I thought greatly about that. And it’s great to have positive thinking. But positive thinking can’t make your brain reconnect. Otherwise, everybody would be doing it who’s locked in.
Rev David Hazeldine 0:21
And I was told to think positive thoughts when I was locked in. But I must admit I did try it for a good two or three weeks to think positive thoughts. So absolutely no change whatsoever. And one day I just thought David are you even bothering? You know what’s going to happen. So just relax into that. Because what I need to tell you from a faith point of view is the very first seconds I woke up. I believe I heard God’s voice.
Intro 0:55
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:07
Hello, and welcome to the Recovery after Stroke podcast. If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor, or you’re one of the fabulous people who help stroke survivors.
Bill Gasiamis 1:29
Go to recoveryafterstroke.com/contact, fill out the form, and as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over Zoom.
Introduction: Brain Stem Stroke And Locked-In Syndrome
Bill Gasiamis 1:41
In today’s episode, I am joined by Reverend David Hazeldine, who was 46 when he experienced a brainstem stroke that resulted in locked-in syndrome. David has written a book about his stroke journey called Don’t Get Excited But which is available to purchase online via the links that you can find in the show notes. Reverend David Hazeldine, welcome to the podcast.
Rev David Hazeldine 2:08
Thank you.
Bill Gasiamis 2:10
Thanks for being here. Firstly, can you explain to me the difference between a pastor, a reverend, and a priest?
Rev David Hazeldine 2:19
Different denominations, so Catholics are priests, and reverends are a church of England. And pastors are everything else. Baptist minister.
Bill Gasiamis 2:34
Okay. Tell me a little bit about what happened to you.
Rev David Hazeldine 2:37
Well, it goes back to Saturday, November 2, 2019, before COVID was even a thing. And I woke up one morning at 6 am just to pray and then we did have a bit of a strange headache on the lower back of my head kind of extended all over the front.
Rev David Hazeldine 3:03
So I went back to bed, I’ve taken some headache tablets. But I woke up again at about 8 o’clock and the headache was still there, which I thought was strange. So went to get some more tablets down as soon as I stepped into the toilet, I had three really quick strokes, mild ones, which affected my eyesight, my balance, and my right ear.
Rev David Hazeldine 3:34
But it all happened in one go. And as you can imagine it was very serious at that time. And so I staggered back to the bedroom and stumbled over my wife. I said something was not right I thought it was flu or something wasn’t quite sure. But yeah, that then progressed. And it went downhill from thereon.
Bill Gasiamis 3:55
When do you say minor strokes? Did somebody explain them as minor? It sounds like it’s never minor. It sounds like that happened all at once. That sounds pretty major.
Rev David Hazeldine 4:07
Yeah. The consultant for my wife in the hospital ICU unit says she would not be having a chat with my wife that she needs to have about the end of life if were just for these first three strokes, but we knew nothing at the time.
Rev David Hazeldine 4:31
So that minor just be adapting to life and dealing with them. But they wouldn’t have stopped me work and they wouldn’t have stopped me doing things. So we just assumed that I might get better. By lunchtime, I thought maybe it’ll go away. But by lunchtime, I still have the symptoms.
Rev David Hazeldine 4:54
My son came into the room at one point he said Dad what’s the matter? Because I was supposed to be somewhere he was there, too, and everyone was asking after me as a church leader. And so he came back. I don’t know what that was. And I said I don’t know. Something’s not right.
Rev David Hazeldine 5:10
That’s all I could explain. Something was not right my balance was off, I couldn’t stand up properly, and I kept falling over. And I just felt better lying down. So this may sound crazy, but it’s an important story. I watched the Formula One Grand Prix and watched Lewis Hamilton, in Austin, Texas, just the qualifying.
Rev David Hazeldine 5:35
And that’ll become significant later on, I say the rest of the story. But after that, was hoping that things would get better. We didn’t. So my wife rang the NHS or the service here in the UK, or 111, you dial 111 And you list your symptoms, and they give you a rough guess of what it is.
Rev David Hazeldine 5:50
And they said there might be some kind of infection or something because it wasn’t a classic stroke symptom. So she put the phone down and rang for nine because we weren’t getting any kind of response. And because it wasn’t life-threatening, they took four hours to attend.
Rev David Hazeldine 6:13
By this time I started to get heavier and heavier. And my speakers ever so slightly slurring, I didn’t notice it. But, my wife tells me many years later, there wasn’t a bit. But when they came and came in, and they’re the bright color uniform smiles, they juggle my ops test my blood pressure, blood, all the different things.
Rev David Hazeldine 6:39
And they said there was nothing, registering untoward. So they said, We think it probably likely going to be an infection. And they asked them, Why do you think you can get down with to the, the emergency the ER, and she couldn’t even hold me, keep me up balanced. And so I couldn’t even get downstairs.
Rev David Hazeldine 6:59
I just shuffled down on my backside steps and left the church house and the area where I’ve been ministering for three years, in the back of an ambulance holding this paramedic’s hands, and in the journey in the way we had a nice, nice chat. It wasn’t particularly difficult to see things were disorientated. But I was under the impression that it was just some kind of infection.
Rev David Hazeldine 7:23
So we get to the ER and walk into it. And there’s only one time in my life that I’ve been to that er and it was a day before with now colleague that was helping us. We helped get off the street into a house. But he had had a relapse and got in that day beforehand. So I knew exactly where I was.
Rev David Hazeldine 7:44
And as I entered the room, the chat for the admin desk said, Are you David hated them? Some of my wife, Sam had grown up to kind of guess, in our paperwork. And I turned around to him. And I wanted to say, Yes, that’s me. And I thought I was saying it but nothing came out. And then suddenly, I had always a wet sensation on my left side coming up through my mouth.
Rev David Hazeldine 8:12
And I thought, what is that? And then I remember just blacking out, but the very last thing was when I hit the wheelchair seats that the paramedic had brought behind me. And so yeah, that was the last memory of what life was like beforehand.
Bill Gasiamis 8:31
Yeah. So the first three little strokes or minor strokes, as they call them, were caused by a clot what were they caused by?
Rev David Hazeldine 8:44
Yeah, it was like just an ischemic stroke. And in my understanding the clot is single. And they got larger and larger and affected, more more areas. So what made me collapse in the ER was the fourth and final stroke, which was the brainstem stroke. That was the massive brainstem stroke. And that’s what changed the game completely.
Bill Gasiamis 9:16
The brainstem stroke happened after your hospital stay when you got to the hospital when did it happen?
Rev David Hazeldine 9:27
It happened in the ER I’ve been in the ER room for about one minute. So I do say to people in jest if you ever want to have a stroke, have it in the ER that’s the right place because according to my wife who wrote a chapter in the book that I’ve written, said all hell, let’s say all heaven being a Christian broke loose.
Rev David Hazeldine 9:50
So she has pushed out away and I’ll suddenly put on the trolley and my talk was cut off my trousers were cut off and they were administering and all the things you need to administer. And the chase all across London to various hospitals for various procedures, trauma juice that slot is the thrombectomy.
Rev David Hazeldine 10:14
But ultimately that thrombectomy failed. And so they said, we want to send you to a hospital in London, George’s, which is just over on the west side of London, so we had to rush back in. But I wasn’t aware of this. And she was falling behind in a car.
Rev David Hazeldine 10:34
And yeah, they admitted me to the neurological ICU. And I was completely unconscious for an entire day. And I woke up on Monday morning, to discover my eyes open. And I thought, you know, obviously I had, I thought it’s going to be some kind of infection. But I found out pretty quickly, it wasn’t.
Bill Gasiamis 11:04
So you had a brainstem stroke. And that was the one that caused all the challenges, all the problems that you’re dealing with now is that the one that you’re recovering from the most, so to speak.
Rev David Hazeldine 11:26
The funny thing is, that is true in one sense that I’ve had to recover, all for my limbs, my breathing, my mouth, my tonsils, everything from that sort of covering, and the clot or reconnected.
Rev David Hazeldine 11:44
But the one thing that gives me real problems is my left foot. that direct connection that net then is a needed operation, which we’ll come to later in the story, I’m sure. But now it’s the balance.
Rev David Hazeldine 11:58
And it’s been diagnosed for me now as multifactorial. In that balance and tolerance, bit of a mouthful, with a mouth like mine. So because I feel like my head is like the English Channel or the Atlantic Ocean. I just feel like I’m on a sea boat at sea all the time. And I’m learning I’m learning to disbelieve that and trust, the wait sensation that I feel in my feet, which is a very strange way to live, but it’s becoming natural.
Rev David Hazeldine 12:32
So I will say that those two are there for me, my balance to the greater ones, the areas minor and the eyes. Yes, it does make a vision look a bit worse, much worse. Because there’s a blank spot in my eye.
Rev David Hazeldine 12:48
There’s just nothing it’s not a gray spot or a black spot. There’s just literally nothing in sight loss. They call it but that has improved slowly. So much so that I’m going to be starting to drive again in the new year. So at the process level and driven since that day in November 2019.
Bill Gasiamis 13:12
How old were you at the time?
Rev David Hazeldine 13:14
I was 46. I’m now 50.
Bill Gasiamis 13:16
Okay. In your career as a reverend, how long have you been in that role?
Rev David Hazeldine 13:23
I was 10 years old. But before that, I was involved in church stuff as a volunteer since I was about 15. So I’ve been around the block quite a long time and moved forward in quite a few churches, doing different outreaches and ministries, working for that local council as community work. But always engaging people with a passion, always trying to make community life better always trying to help people. So that’s all about service.
Bill Gasiamis 13:53
Bruce, pastors, and reverence are front and center when it comes to people passing away funeral services, or helping people who are sick, unwell, etc. Yeah. And they’re usually doing it from the front of the front of the church, behind the pulpit. They are usually the ones who are rallying the community to come around and support somebody who’s doing it. Who’s doing it tough? In your life of 46 years before the stroke, did you ever consider that that person who needs help one day might be you?
Rev David Hazeldine 14:40
No, I mean, that’s what it cost me this strange thing. My whole life has been about helping people. We spent six years doing lots of social action, and social outreach, just trying to help people with medical things with their income with it. job, I see these getting jobs, furniture redistribution, cleaning houses, access to benefits, all that kind of thing.
Rev David Hazeldine 15:11
And then suddenly there I am completely paralyzed. And suffering locked-in syndrome, am I every need, has to be in there even what I might eat want to drink the screen or somebody else. So, yes, it was a real real change, they were quite ironic. And, on the first Christmas day, I was still locked in at this stage.
Rev David Hazeldine 15:36
And I remember thinking to myself, so this is where it’s like being in the hospital on Christmas Day because I’ve made it my business every day or every year on Christmas Day, to pray for people who are not around the table with their family, you know, armed forces, people in the hospital or nursing homes, that kind of thing.
Why bad things happen to good people
Rev David Hazeldine 15:55
And I’ve always tried to mean it from my heart, but always felt quite shallow. But you understand, but I knew as you were writing that I felt passionate about doing it. And I just said a lot of the things and this is what it feels like when you’re that alone.
Bill Gasiamis 16:13
You’re your job gives you a more philosophical approach to life, I imagine. If yes, in one perspective, you’re probably philosophizing while taking people through their hardships while they are finding it difficult. You then find yourself in a position where you have to self-philosophize, and you have your way through.
Rev David Hazeldine 16:43
A really good question and part of several stroke forums on Facebook. And one of the biggest questions there is why did this happen? I don’t see this, what have I done to deserve it? And it is a big question. But if I’m really honest, it never really bothered me why bad things happen to good people and why good things happen to bad people. I, my faith was born out of being a 34-year-old.
Rev David Hazeldine 17:09
I have had one or two significant encounters in my faith with God as I believe him to be, and that shaped my life. But I think around the time I was thirsty, I thought I better think about suffering. Because many people have questions. I didn’t have any questions. I thought I leave it to God, he’ll sort it out.
Rev David Hazeldine 17:35
And he’s in charge of everything he knows. I’m not bothered about it not not in terms of people suffering, but I’m not bothering the office for answers and questions. But I then started the next 10 years studying it or, as you say philosophizing about it, reading up on it, citing the Bible, and listening to sermons and listen to YouTube things. So I come to peace with what I believe to be the arts of the suffering.
Rev David Hazeldine 18:02
So when it happened to me, I can be honest and say, I wasn’t bothered about it. I was I know sounds strange to listeners. But from a faith perspective, as a Christian, yeah, the whole Christian faith is about living, overcoming life. Overcoming all difficulties, no one life is perfect.
Rev David Hazeldine 18:25
Bad things always happen. But being a Christian, you have a way of dealing with it and a mindset of how to deal with it. Because you understand the face structure of how the world works. My ultimate belief is that all these things happen because God’s revealed his nature to humans.
Rev David Hazeldine 18:44
And there are one or two stories in the Bible where good people doing good things, suffer for indiscriminate reasons. And through it all, they become more blessed at the end than they were at the beginning. And I’d say that’s what’s happened to me. My wife’s job, our house, children, where we live, where we were driving, or doing who we know how I help, how we aren’t, everything’s got better.
Rev David Hazeldine 19:09
So I’m not trying to be cheesy or plastic. I don’t try and put a spin on it. These things are just happening around us. So I don’t have a problem with that I feel strangely. I feel quite privileged. That goddess, I feel God has chosen to reveal, as I say his mercy to me because I’ve been saved in such a terrible circumstance.
Rev David Hazeldine 19:36
One of the difficult things my wife had to hear on that day on Sunday when I was in my coma was when she had to hear the console said, your husband’s not going to make it. If he does, either, there’ll be a 10% chance of survival, and that survival will look like 24/7 care. It was In Institute, and they probably won’t reach that time and probably died from a stroke, which we expected next few days because he was so weak fighting his chest infection.
Rev David Hazeldine 20:11
You know, if you lie down for a long time, you’re not breathing well. And you get fluids, infection, your lungs, and then you get just infections as well. My lungs are paralyzed, my diaphragm was paralyzed, I wasn’t swallowing, I was paralyzed, I had to have all my mucus, and, my throat sucked out like six or seven times a day. So as a victim straightaway to these different medical situations threatening me.
Rev David Hazeldine 20:41
But after seven or eight days, the chest infection went away and I was moved to a hospital Lewisham in London. And I gradually began to become more and more stable and whereby surroundings. So when I obviously when it came out, after 1010 months, we’ll come back to the slides change to a physiotherapy Institute. But when I came out of that, after the whole journey, after 10 months, I was desperate to find out about locked-in syndrome, desperate to find out how many people survive.
Rev David Hazeldine 21:19
And I can remember my wife explained to me, in the first few days of consciousness, what happened to me. She kept using this phrase, but I couldn’t find anything about it. So when I came home, I wanted to find out about it myself. In the space of a few months, I managed to find around 10 to 12 people who had been locked in and had survived like me.
Rev David Hazeldine 21:45
But that was in the age of social media. And that was 12 people in the world. So that wasn’t for people in the UK or your nation. It was the topic in the world. And I was stunned by that. Throughout my whole period in the hospital, I had consultants nurses, and doctors saying, this is very surprising, what’s happening is wonderful. They couldn’t say it was a miracle. They couldn’t say, you’re going to get better.
Rev David Hazeldine 22:18
But they kept saying to me one thing was you’re to run a book. And the other thing was, this doesn’t happen to many people. Well, what they meant was, it doesn’t happen to hardly anybody at all. In the UK, I found out that at any one time, about 400 people are suffering from locked-in syndrome.
Rev David Hazeldine 22:39
But all of that’s maybe one every four or five years, like me, will survive. And then even more years than that they’ll survive to a standard like I am. So yes, it is quite a sobering thought when you think about what you’ve been saved from. That’s why I kind of think about mercy. And I think how merciful I’ve been, I’ve been at the mercy of experience, and I believe most football has been.
Intro 23:08
if you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things but, you’ve never had a stroke before, so you probably don’t know what questions to ask.
Intro 23:33
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.
Intro 23:52
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com and download the guide. It’s free.
Brain Stem Stroke And Locked-In Syndrome
Rev David Hazeldine 24:10
Now some people who have been locked in like me, have survived. And they have no faith at all. these are very positive people. And I thought greatly about that. And it’s great to have positive thinking. But positive thinking can’t make your brain reconnect. Otherwise, everybody would be doing it. Who’s locked in? And I was told to think positive thoughts were not locked in. But I must admit I did try it for a good two or three weeks to think positive thoughts.
Rev David Hazeldine 24:43
So absolutely no change whatsoever. One day I just thought even Why are you bothering me? Do you know what’s going to happen? So just relax into that because we’re our knees tell you from a faith point of view is the very first second If I woke up, I believe I heard God’s voice now when people pray, they think that’s natural.
Rev David Hazeldine 25:07
Well, as soon as you say, I heard God speak, that’s like Nutter crazy. He’s weird. He’s going to block some people somewhere around the world and create a disaster. But I must admit since I was age 50, my whole life of service has been founded on hearing God reading the Bible listening to him, and just understanding his heart when he wants to people.
Rev David Hazeldine 25:31
So, I believe that that happened, the moment that I woke up, you know, when you wake up in the morning, and your eyes are closed, and the darkness you can see is inside of your eyelids. And you say, I’m awake, I will now open my eyes. And it’s a split second of thought. And at that moment, I believe the words he said to me were, you’re going to be okay.
Rev David Hazeldine 25:54
But that wasn’t me saying, I’m gonna be okay. I didn’t know anything. I thought I had an infection. That was it. But when I open my eyes with this, I’m gonna be okay, wringing my hands. It was such an indelible phrase that I didn’t make up. And it stayed with me from that day to this. I couldn’t believe it. I didn’t have to think positively about it. It’s like a, how do you describe it as like a flowing river?
Bill Gasiamis 26:24
It’s a fact.
Rev David Hazeldine 26:26
I’m just conscious that many listeners will have no faith at all, many will be spiritual and will be open to these kinds of things. But I can just say what happened to me. I think I know lots of people.
Bill Gasiamis 26:37
I think many listeners with no faith, I think, understand the concept that you’re describing. Because the concept is not. It’s not a religious concept. It’s a human concept. And I was raised as a Christian, I don’t go to church. But it’s great. Well, my background is Greek Orthodox. And when you go to church, a Greek Orthodox Church, they speak in ancient Greek.
Bill Gasiamis 27:09
And I don’t understand it. And it’s really difficult to go to church and get excited about learning scripture that way. And if you haven’t done it by the age of 49, you know, nothing is calling me to go and learn it deeper or further. And I know enough that, you know, I can appreciate the idea of God. So when I had my strokes and brain surgery, I had the same feeling of, no, I’ll be okay.
Bill Gasiamis 27:39
I never thought about what I wanted. And I’ll be okay. Regardless, I never thought about whether I would walk again, I never thought about the challenges I was going to have to overcome or face whether I’d work again, or I never thought about any of that stuff. It just did not enter my mind. And I thought about death, and the fact that I might not be around. If it happens again, it might be the last one.
Bill Gasiamis 28:04
And it happened three times. And then I had brain surgery, and then it wasn’t the end. And when I, when you explain that you had God talk to you, I had a similar experience. But I kind of describe it as my internal self talking to me. And when people listen, when when I chat to people on the podcast about what I believe about God, or what God is, I think God is me.
Bill Gasiamis 28:34
I think I’m in God, or God is in me. And, there’s not a separation, like the church does. My particular church and other churches externalized God from me, the person. And what I always struggled with was, if there’s a problem, I pray to God.
Bill Gasiamis 28:56
And no one ever said to me, God is within you is you is part of you, in a way that I would understand that what I’m doing is telling, having faith in myself, which other people describe as having faith in God. And I think that they’re not separate. I think they’re the same.
Bill Gasiamis 29:18
And it’s my weird way of accepting and understanding God, the God that other people have accepted and brought into their lives, and pray for all their blessings. I kind of have internalized that and made it one with me. And I don’t go around telling people that I’m God on them. But do you know what I mean?
Rev David Hazeldine 29:46
Yeah in Christianity. There’s a massive mystery written about in the New Testament, where when you put your faith and you repent of your sin, put your faith in Christ is not just a second chance is actually what happens is you are born again there’s that phrase that people look out for is a verse from the Bible, Jesus said, You shall be born again. And what it means is your spirit man is born again.
Rev David Hazeldine 30:13
And a God comes to live in you the mystery, the Bible talks about as Christ in you, and we are in Christ. So yes, I understand how you might use that language of internalizing things. I can just say, from when I was 15, I used to be quiet I’ve got two ears, and one mouth, I just thought, I needed to listen more like talk.
Rev David Hazeldine 30:35
And if God is real, then he wants me to know him, and I must listen. And it’s just a logical thing. It wasn’t a blondie revelation when they just grew up inside me throughout the years. So this kind of experience happened. And I heard what you know, in my heart, my soul what I believe God has said to me, and I knew wasn’t me saying it.
Rev David Hazeldine 30:58
So when I opened my eyes, I thought my thought was, why, why do I need to know that? I’m gonna be okay. What is not okay? What’s the matter? So I see all around me, the surroundings of a hospital bay curtains drawn, and I hear the hush tones, people around. And suddenly those two nurses Australian nurses Speech and Language Therapists.
Rev David Hazeldine 31:22
And they said, David, we’ve been sent in to try and make contact with you. Now, that is, like a phrase in aliens would say, we’re here to make contact with you. And I thought, why do they need to make contact with me? But instantaneously, because I didn’t reply. I knew something wrong with my mouth, my throat, my speech, my voice.
An alphabet board and how it works
Rev David Hazeldine 31:47
And they said to me, you’ve had a brainstem stroke. And you’ve got locked-in syndrome. And we want to explain to you about an alphabet board. They then spent the next 10 minutes explaining to me what an alphabet board was showing me at the same time, and how they were going to use it for me to communicate, they asked me to spell out the words Yes, spell it the worst, no, get used to blinking.
Rev David Hazeldine 32:20
And then they said, right now we’ve done that. Do you have anything you’d like to ask? So that’s a time when anybody should say, I love my family. I’m not going to die. How bad this is. My question was, is Lewis Hamilton the world champion? Because I wanted that. I had such a deep calm of nose words, I’d heard from what I believe who I believed God to be that I was going to be okay and although I didn’t fully understand what locked him was fine.
Rev David Hazeldine 33:01
I knew I couldn’t move anything as I tried to arms, and nothing worked. And that is one weird sensation. And I felt like I was floating. I couldn’t even feel the bed underneath me. The sheets on top of me, all sensation had gone. All my nerves had been cut off and my brain was laughing.
Rev David Hazeldine 33:20
I set my eyelids, I couldn’t turn my head. I couldn’t, I couldn’t even my head clicking sound on my lips or fingers, or I couldn’t do anything indicate to anyone. So when I did this full sentence, we took an ordinate amount of time to say in fact, I did give it a few short tries to do short on versions. And they went back to my family and said, Dave is talking about a car, and Louis and my wife popped up and said, Well, we’ve got a friend called Lewis.
Rev David Hazeldine 33:52
And we used to have a car. We used to have a car with a registration that had the LWS. That’s what we used to joke about. That’s Lewis’s car. What is he talking about? So the way they came back in and said, David, we’re not quite sure what you mean. So I thought, oh, no, I’m gonna have to spell Lewis Hamilton World Champion champion. That’s gonna take ages and it took about 15 minutes to say it.
Rev David Hazeldine 34:15
But then they came back to the family they said they were asking if Louis amateur World Champion and my dad then burst out laughing. And he said That’s my David. So that was what I didn’t realize at the time I feel really stupid saying that. I should have said something like, I love you. I believe her from God.
Rev David Hazeldine 34:34
I repeat Forgive me, okay, because they were very tearful. And my wife spent the whole week I was nice to you, in your complete meltdown and brain fog and confusion, and been told by nurses he’s gonna die. He’s gonna die. And my kids are brought in to see for one last time, which I do not remember.
Rev David Hazeldine 34:57
They were in tears. Well, it was the world Just go slow for them. But the thing I said was to lose helmets and world champions. But that was the best thing I could have said because it meant I had a memory that meant time. Yeah. And our full accomplishments are there. They knew right there.
Bill Gasiamis 35:18
Yeah, you’re intact. It’s kind of like a sign, a small sign. And that’s a sign when it’s such a small thing. It is a big thing for the family is huge. And like a dad. So yeah, there’s my David, you know? Everything was going to be okay. It seems like you had what I would describe as a deep knowing a deep knowing, yes, you were going to be a cat. So what I had I had a deep nothing. That’s a really good phrase.
Bill Gasiamis 35:54
And that is such a powerful thing because there’s nothing that you have to do about it. No, deep knowing is something you do not have to do anything about, you just know, it’s going to work out, and things are going to improve. Things are going to change, no matter what you’ve got ahead of you things somehow are going to take a turn for the better, in some way, shape, or form. You don’t know what that looks like. But you just have it. Yeah. Knowing it’s such a powerful state.
Rev David Hazeldine 36:23
Yeah, I think you’ve taken the words right out of my mouth. When writing the book, wouldn’t get excited, but I’ll tell you the story behind that because of this chat about it in a bit. Yeah. Because of the recovery. And that’s the title of the podcast, right? But it Yeah, it was just so solid in my heart, that I was gonna be okay, but I didn’t know how I was gonna be okay.
Rev David Hazeldine 36:49
Would I have some kind of biblical instant miracle? Or would I gradually get better over time? Or were they gonna be one or two quick things? So actually communicate your sound through the alphabet board? Are we going to, are we still going to Cypress because we put a holiday to go in July?
Rev David Hazeldine 37:09
And I’d had this stroke the strokes in November, and COVID wasn’t a thing. So I couldn’t quite grasp it yet. How bad was I What’s going to happen? But that slowly revealed its time. So my discovery for the book was how I dealt with coming to terms with it shouldn’t take a very, very long time to recover. And there’ll be many rocky roads to follow. But ultimately, you’re going to be okay. And now, so one thing that got me through everything?
What is behind the why me? – Rev David Hazeldine
Bill Gasiamis 37:44
Yeah. Excellent. Let’s go back a little bit. You said earlier, that two good people indiscriminate, bad things happen. And then some of those people will say, Why me? What do you think is behind the why me? I’ll, I’ll give you a sense of some of it. I have an understanding that some of the why I am based on religious guilt.
Bill Gasiamis 38:10
God has punished me, there’s a little bit of that, that you hear from people, they go, yeah, they’ve picked up somewhere in the extreme experience through religion or church or through stories that have been passed down from family members, that God is going to punish people who do the wrong thing.
Bill Gasiamis 38:32
And then somebody ends up having a stroke, and they automatically believe that God is punishing them. So what do you think is behind the why me? And then how do we do the God is punishing me thing?
Rev David Hazeldine 38:52
There are two things I think what’s behind it as a cry. It’s, it’s not fair. I think that the amazing freedom I’ve had from setting mercy and understanding what mercy means is that I don’t deserve mercy. But I receive mercy. I don’t deserve a blessing. I didn’t deserve healing. I don’t deserve the wife I have. I don’t deserve the kids I’ve got because there’s an understanding of Scripture that and the word go, Man messed up.
Rev David Hazeldine 39:28
And so that DNA was affected, their health was affected, their minds were affected. Their relationship with God was affected and death, we told the human race that death was not a concept when God first created the earth. And so when people say, Well, God made me like this. Well, that’s not true, contrary to what Christians believe in the Bible.
Rev David Hazeldine 39:50
It shouldn’t be that fun. That’s up to you. But I think there will be struggles when something happens that you don’t think it’s fair to you. You’re saying, why not but if you take the Christian worldview that is taught in Scripture. You start from the perspective that everything went wrong. You know, God is good, because he did great well for Adam and Eve for thy mercy messed up.
Rev David Hazeldine 40:13
And so the whole Bible story is a story of how God wants to redeem that now as part of that, human nature is disobedient. So Yes, it is punishment. But it’s not my place to say to someone, you are being punished by God, I don’t know that. So I can think of 567 reasons why a stroke may have happened, to somebody, but I can’t say exactly what we find, all I can say is, I don’t know why I had my strokes.
Rev David Hazeldine 40:43
Because 10 years full of strokes, I was praying about something particular that hadn’t gone the way I wanted. And it is not going away from one, two, or three or four different geographical situations I’ve been in. But since a young boy, I felt that something significant was supposed to happen to my ministry. And so in the book, I’ve written, the first chapter is called, something’s Supposed to Happen. Well, at the end of the chapter, it didn’t happen.
Rev David Hazeldine 41:13
But then chapter two is, so it did happen. And that was the strokes, which, you know, a real curveball. But it all began to make sense. But what I felt God said to me at the time was, some people show their hand too soon, you know, if you’re playing poker, cards, you got to hold on to cars and take the risk.
Rev David Hazeldine 41:32
And when you wait, bide your time, and get the right cars, you then land down at the very end, you get the most value of chips, and you get the best hands. And that’s what I felt God was doing. And he was going to put me in a position where he was saying, wait. And now I’ve got you where, what you, I’m going to do this in your life.
Rev David Hazeldine 41:53
And I’m going to show how much Mercer has in the recovery and the story of it in the place. I’m not going in the podcast, the UN has some radio interviews coming up. And speaking engagement, I’m able to share about where I believe that verse year. So yes, I do feel that people live with a sense of when asked questions sensitive, basic injustice.
Rev David Hazeldine 42:18
I don’t deserve this. But the Christian message, you do deserve it. But the good news is that Jesus came to save us in mercy for what we do deserve. So otherwise, it’s not good. So I do feel that that’s that. That’s what I would say, to some people.
Bill Gasiamis 42:39
Now, I hope that brings something to think about for the people who are experiencing that one of the most difficult things is to be supporting somebody or coaching somebody to get through their stroke recovery, and then to have them feel like they’re being punished for something.
How to ask for forgiveness?
Bill Gasiamis 42:59
And that’s tough. And if and I don’t know if the answer for some of those people who say they have done something terrible that I don’t know about, which is, yeah, which will be common. I’m not sure what the answer is. But perhaps the answer is, to ask for forgiveness.
Bill Gasiamis 43:17
Forgiveness is a general thing that people can ask for whether they asked for it from God or put it out there into the universe to ask specifically from the people whom they feel like they’ve wronged forgiveness is an amazing thing to do. It’s such a powerful thing. Now, I didn’t ask God for forgiveness again.
Bill Gasiamis 43:38
But I did ask for forgiveness. And I didn’t have an actual conversation with the people who I needed forgiveness by just praying for forgiveness from them. I put it out there. And I made it a practice that I did for a little while.
Bill Gasiamis 43:56
And I think I received forgiveness back. I felt like it had changed the way that I related to the relationships that were difficult because of the things that I had done that made those relationships difficult.
Rev David Hazeldine 44:16
Yeah, I think there are so many situations in the Bible where it talks about justice, and for God not to mete out justice will be abhorrent to the victims. Sin affects CMP with lies, and not just personally commits it with people that are committed against you I wouldn’t like to live in a world where there are no police, and we’re enraged if people get off scot-free.
Rev David Hazeldine 44:45
And so God’s God’s punishment is always linked to justice. Someone always deserved it for whatever they’ve done. But if you think you’ve never deserved it, then you’re saying I’m perfect. I deserve things, but we Oh, no, no one’s perfect. I think there’s a bit of a struggle with that.
Rev David Hazeldine 45:04
So if you can accept in your heart, I’m not perfect, I need help. That’s just a wonderful way to come. Come to the NSA, and ask for forgiveness. Ask for mercy. And you receive such wonderful help because the Bible was at pains to say, how merciful and loving gracious God is. But that love also has just a part of it, how can you love someone? If there’s no justice? How can you love your kids?
Rev David Hazeldine 45:34
If you don’t want the best? And How can you love them? If they you let get away with disrespecting you? So it’s just about doing the right thing? How can you love your kids? If you let them do whatever they want to do? I love my kids, I want to give them every single chocolate bar that ever won and every single ice cream that ever wanted. And we’re going to do that no way. That’s harmful because it just won’t be the right thing.
Bill Gasiamis 45:58
I like what you said about justice. And that, you know, people wouldn’t feel good if justice hadn’t. People don’t feel good when justice, when they feel like justice, is not served. And it’s maybe then what encouraged me that feeling is what encouraged me to have to ask for forgiveness. Because I felt like I had done an unjust thing to somebody.
Bill Gasiamis 46:25
And then deep down, I felt like they had not received justice. And then as a result of that, that that set, set uneasy with me. And what I needed to do was make that right, I made it right for me, firstly, by the sound of things, but that also then makes it right for the other person, there’s a win-win.
Bill Gasiamis 46:47
Both people feel one person feels like the unjust actions have been made, right, so to speak. And the other person feels that they’ve been heard or justified or, or, or that I’ve seen that error in my way. And then yeah, sort of settles the feeling in my heart, as you said.
Rev David Hazeldine 47:14
And you see how effective that was. If you were to bump into that person, your attitude different your tone of voice would be different Newton, you may say story, there may be time for restitution, maybe that person has died for some people. But we just have to accept that. When we talk about punishment in the Bible. It’s not indiscriminate. It’s not random.
Rev David Hazeldine 47:37
There’s a chorus, slow to anger, the Bible says I was recently reading a story the other day, they got to God 800 years ago to punish a group of people for some that he wore them for over 800 years. And they still went ahead and did it as a group or group of people. So you know, he is slow to anger.
Why did this happen to me? – Rev David Hazeldine
Rev David Hazeldine 47:58
So there’s no fear of these being indiscriminate is random. You know, love has rules, there is order, there is constraint, there is restraint. But there is the law laid down. This is how the world works. And if you do things wrong, you will be punished. But again, there are many other situations where life is life. Things just happen. And we all have to deal with those two. So it’s not for me to cast aspersions and say, this is why this happened to you. I just don’t know. But maybe one of many situations.
Bill Gasiamis 48:35
I had, I had a bit of a why me moment as well, but not a Why did it happen to me? I had a Why did I survive? And other people didn’t? And why do you think I had survivor’s guilt? Right. So that was weird and strange because, of course, I’d never experienced survivor’s guilt at any time in my life before.
Bill Gasiamis 48:57
But I had to go to theater therapy about that and understand why I felt bad for surviving, something that a lot of people don’t survive. And then it kind of occurred to me that there’s got to be more to the story than just surviving this. You don’t just survive something like this. No, then just go back to regular life and do what you’ve always done, and not learn from it and not support people who have been through something similar and not grow from it.
Rev David Hazeldine 49:29
That’s right, and this podcast is a great way of doing that. Right.
Bill Gasiamis 49:33
The podcast is the result of Why Me? I understand now why because I had to share my story. I had to find people who were like me, that understood me so that I could let them know that I understood them. And then I had to create some kind of a community around us because there wasn’t one it was in the day before.
Bill Gasiamis 49:54
A podcast existed about stroke and It was, it was that? Again, I didn’t know how I was going to do it. But I had faith that I was going to be able to have this podcast and it was going and everything. And that occurred. And, then the why me is still a question, why am I Oh, okay, I know why.
Bill Gasiamis 50:19
Because I have to put out this content for people. And I have to attract people to me, so I can support and help them. I have to make it better for people who have had a stroke because one in four people is going to experience a stroke in their lifetime. And that’s not a statistic that I enjoy hearing.
Bill Gasiamis 50:42
And that means that there’s going to be a necessity for what you do, David, which is raising awareness of a situation in your community where there’s a problem, and let’s bring ourselves Bring, bring us together so that we can all support the person who needs this is actually yeah, it’s kind of how I feel.
Rev David Hazeldine 51:04
Yeah, I mean, if we were gonna move on from philosophy in a second, but I would say, yes, what you’re doing is giving back, you’re giving to people. And that’s the nature grid, you’re demonstrating the giving heart of God, you may know it, you may not know it, but that’s why doing.
Rev David Hazeldine 51:22
So an even greater purpose behind your podcast is not just the podcast itself, but it’s what it reveals about God, he’s always trying to reveal Himself to us, he can’t turn up, you know, because or die from his sheer glory. But he did that once in the flesh in Jesus and wrote a book about it.
Rev David Hazeldine 51:44
And so the podcast has so much greater significance in the universe, as it were. But I think these things are where do you have faith? I think one of the key things to my recovery was that sense of purpose, I knew something good within Canada gonna come out of this. And that purpose kind of drove me on in my recovery was a very active recovery and in engaging me a lot, a lot of physical work.
Rev David Hazeldine 52:11
But that sense of purpose, was able to enable me especially when I had to think about my instantaneous disability, and struggling with going through the stages of a wheelchair, or all persons Walker, a walking stick. And now will he freehand with just a cast after the operation, to set that you’re disabled?
Rev David Hazeldine 52:35
And to have that sense of overarching purpose. I kind of feel that I’m not disabled. I know I am. There’s no denial, I am disabled, and I’m getting government benefits. There are things I can’t do. I had I went on a plane cybers recently, and I had to take a wheelchair and go through a special entrance and go on a car, which was the curse of the airport, they wouldn’t get out of the way and we even laugh about it.
Rev David Hazeldine 53:01
But I needed that and I am disabled. And because I had this overarching purpose about why everything happened. I had the purpose before the strokes anyway, I just feel like it’s an expansion, a continuation of that. And I think that was one of the hardest things in my period of rehab.
The hardest part of rehab after Brain Stem Stroke And Locked-In syndrome
Rev David Hazeldine 53:18
Because I spent these three months after my ICU 11 days it was spent the three months kind of bedding down and recovering and just stabilizing in this hospital in Lewisham and starting the show a few guys my little fingers started twitching and my feeling came back on my boy that gives various tests and what my right knee was able to lift down a little bit my right, came back spontaneously with about two weeks just started working if nothing ever went wrong.
Rev David Hazeldine 53:49
So they decided to move me on the sixth of January 2022, to a rehab facility in Putney in southwest London called the Royal Hospital for Neuro-disability. And I spent seven months there in the first during the first wave of COVID wishes I experienced all by itself, learning to eat and drink and speak, get my fingers stronger when tennis had to work.
Rev David Hazeldine 54:21
I put myself on intensive work with Beijing like I was at college I tend to start at nine and finish at five and I was helped to get into a wheelchair and got out of bed with a sling that seemed like a merry-go-round ride every morning. And then I was just doing Verity the session of the pressing standing going through various walking aids again and Grassy gained more and more independence until the final day came in about.
Rev David Hazeldine 54:53
It was July near my wife’s birthday July 3. When they said David we think that we can get You home without a care package without anyone for the NHS, airing few we think you can be fully independent when you go home. And that was a tremendous lift because I was dreaming at that time that I would love to walk out of the hospital, ever so triumphant, to be able to be rolled in the hospital, in Putney there in West London.
Rev David Hazeldine 55:28
Locked-in syndrome lying on a bed. And I felt so, so heavy was tied, because when you have your muscles don’t work, and they’re not strong enough to lift themselves. The big word thing is people with stroke struggle with this notice the heaviness you feel and the stupid tarnish it at the end of the day.
Rev David Hazeldine 55:49
So that just got lighter and lighter. I mean, I still feel heavy now but nothing compared to when I remember lying in My bed trying to get up. And I felt like my back was welded to the bed and I just couldn’t get up. So when I had this experience I was thinking about all the things that people have done for the military that was done for me.
Rev David Hazeldine 56:12
People give me medications wipe my backside and do my price when we always have humility was all my Integrity and normal integrity. I forget the word now but self-esteem and all that kind of thing. And privacy was all gone. And I thought it was a wonderful camera evening. But now that muscles are reconnecting and I can move a little bit, surely, I’ve got to do something.
Rev David Hazeldine 56:39
And in my youth, I was a keen cyclist athlete, you’d play football and do weight training for a couple of years, twice a day. And I just understood instantaneously at that moment, in my mind it was one morning, about five in the morning, I’d woken up. And I just thought I’ve got to do something. And I started doing try and do sit-ups.
Rev David Hazeldine 57:02
And of course, I could only move my neck about two centimeters. But it took me until I was home another two months. So in total, it took me about nine months to be asked to do one setup. And that is the length of time I’ve had to where I’ve come from where I am. And I’ve carried on doing that rehab every day.
Rev David Hazeldine 57:27
And that’s the key for recovery to do big goal orientation. We kept recovering every day, about four or five hours in the mornings. Then the afternoon I write and do other things to do with Christian ministry. retire the fishy so ill health. But that time in the morning is invaluable for me. Just get my left leg strong my right leg strong mine, my stomach, my chest, my right arm, just fantastic.
Rev David Hazeldine 57:56
Now, it’s just wonderful to see the weights dropping away, and may not need them anymore and beyond their function. So one of the few who run that around the house myself. And now I cook myself food. Even the other day my wife used to she was a Xiaomi when I first got home, and for the first time, only a few months ago, I was able to have a shower myself. And I was able to get my right hand, my left hand under my right arm to clean my armpits.
Rev David Hazeldine 58:28
I mean, that’s so rude in one respect, so personal, but it’s a massive, massive game. And I said look into it, and suddenly I realized I don’t need you anymore. But the devotion that my wife has given me throughout these years, and these years of recovery has been incredible. But we do joke a bit and say, I’m the only husband who is working to get better.
Rev David Hazeldine 58:55
So you can do chores around the house. She’s got a list of long rants, I’m now doing finances. I’m doing the dishwasher on the current table and I’m making my food and that kind of thing. But that the whole book that I wrote is all in the envelope of devotion is what struck me when I came out was I joined the stroke forums on Facebook.
Rev David Hazeldine 59:18
They’re in America, Australia, and England. I’m struck by the number of relationships and marriages that are broken up due to stroke I can understand it greatly saddened me because when my wife and I got married, I was 20 she was 19. And we promise in sickness and health.
Rev David Hazeldine 59:42
You know, we meant that. And that promise counted there from November 2 2019 onwards, and she has lived up to every moment of impure devotion. And it’s been fantastic. I’ve had to help her in How to Help Me because she wanted to do everything for me, which doesn’t help me recover.
Rev David Hazeldine 1:00:05
So I said, Look, I’ve been learning to ask for help them learn to ask for mercy, you’ve helped me. But now I need to a healthy way, and learn to help myself, I’ve got to struggle and need to learn how to do these things. Print socks on print trousers on Britain T-shirts on. So, her devotion has been fantastic.
Bill Gasiamis 1:00:28
Yeah, it is a massive blessing, no doubt about it. With relationships that fail, often they’ve been failing before the stroke, and the stroke is kind of the end moment. So that’s kind of understandable. Often, it’s the problem is that the person surviving the stroke is in a really bad way. And the other person who is their partner is unable for their reasons to deal with or manage that process that’s understandable too.
Bill Gasiamis 1:01:09
And it just, I think it’s an opportunity for people to do more work, and more and learn more about what they need to do to help themselves because if you can’t help yourself, you can’t help other people. And that’s what I feel. The situation is when people’s relationships, and after, after a serious health issue, like a stroke, because it’s such a big job.
Bill Gasiamis 1:01:35
It’s such a big job to devote yourself to supporting somebody and to therefore also look after yourself while you’re looking after somebody else. I think that the hardest part that I see in people who are being cared for is the caregiver struggles to be able to care for themselves. That’s not a good situation to be in.
Rev David Hazeldine 1:01:56
The difficulty has been my wife has had to learn to romantically love me again, rather than just be my carer. So she’s officially by a carer as designated by the NHS, but that is dropping away, literally day by day. And she’s learned to be my wife again. And then we learn to have romance, rather than just being objects of care.
Rev David Hazeldine 1:02:21
But for the first, if I can be honest, a month, two years after the stroke, like their home, it was just about getting stronger and stronger exercising, exercising. She just let me get on with it and encouraged me and said, You’re great. You’re great. You’re great. Keep doing it. Keep doing it. And it’s just the thing I needed.
Don’t Get Excited Butt by Rev David Hazeldine
Bill Gasiamis 1:02:39
Yeah. Fabulous. So you wrote a book. Somebody put the splinter. They say they told you you should write a book about it. Great to say they don’t get excited. But a true story. Yes. They’ve been in love, faith, and purpose discovery on a journey through utter devastation. And it’s how it has approximately No, exactly. It’s 19 chapters. Yes, how many pages did the last us about?
Rev David Hazeldine 1:03:13
It’s a standard size. You can see the spine of about 250. There are 18 chapters of the story, the 19 chapters just in medical, the little two pages of what happened to me. So just so people clarify Bucha doesn’t major so much on exactly what happened just in hearts.
Rev David Hazeldine 1:03:22
But the real medical language that people will look up and want to know because we all stroke survivors want to find out you know, medically what happened to me that in the last last chapter about page or so, but the reason is called Don’t get excited. But as I started behind this, when I was learning to speak, learned to speak the very first thing that to do the speech and language to present to get me to swallow. And I was not in control of my sweat I couldn’t swallow.
Rev David Hazeldine 1:04:12
So they used to suction it out. There’s tracheotomy, you can see what the list is obviously but I’ve got this whole my neck now. And so they used to suck out the fluid that your mouth produces so much I had no ideas and about seven or eight times a night and they’re stopping you from drowning you’re in slope basically which is a grocery store but that was the reality and I did become used to it. I became used to the sensation of drowning which is quite sad.
Rev David Hazeldine 1:04:46
But because the first thing they do is try to wean you off the trackie and so you have this balloon inside your throat, which is trying to protect your lungs and have a fluid in it They call it a cough this balloon. The first step of the process is to cough down, as in deflating the balloon and opening up your airways to your saliva. And see if you can generate any swallows.
Rev David Hazeldine 1:05:14
Well, I felt very, very vulnerable. Any kind of trick or slide or any noise in the room any joke, you’re laughing or any distraction will make me cough and choke. My homeboy was shaking violently because I had no strength to control it, then the physios who are in charge of that, and speech-language therapists said that’s too much for you, we’ll come back tomorrow, or we’ll give it a rest day.
Rev David Hazeldine 1:05:40
And this was slowing down my recovery. So I would have to blink through the effort was my wife, when I wanted to sell a summit that happened. That improved I used to notice overnight what happened in my body to say, community to don’t get excited butts. So she would not laugh, not Oh, hooray not give me random floors or anything like that, because that set me off to just walk out of the bay, get excited come back in, then I say, Guess it but my right arm moves, look what my fingers can do.
Rev David Hazeldine 1:06:13
Or my knees started moving last night. And that was how I was able to keep the rehabilitation going. Without her joy, excitement, messing things up. But that’s why we don’t get started. But so then we use, we then use that as a phrase for other things. So I would say don’t get excited, but I don’t need my wheelchair anymore. Don’t get me started. But I made my first phone call. Don’t get excited. But I can stare at all these different things now.
Bill Gasiamis 1:06:43
Yeah, that’s exciting. I like that. I love the idea that her excitement was going to set you off and you needed her to be mild-mannered and to act as if nothing happened so that you don’t get triggered.
Rev David Hazeldine 1:06:59
We have this added thing that um, one of the side effects of my stroke is my brain has lost the ability to control this emotion. So you may have noticed and listened and may be able to hear me laughing a bit excessively sometimes. And so I’ve got more and more control back and there are mental techniques.
Rev David Hazeldine 1:07:20
I was taught by a psychologist during my stay we have to control it. But it means also my anger is there like a child throwing the toys at Graham, unlike a fist you’re at like a kid or crying. My son wants to show me the latest Star Wars film My brother is a member of Battery you can get access to graduate in the UK, Susan’s Karen. So I watched this in Lewisham Hospital where I was paralyzed.
Rev David Hazeldine 1:07:49
And I started sobbing and sobbing and sobbing, and my body was shaking. I’ve seen what is happening here. And the reason I was sobbing was that good traffic over evil. I don’t cry in any movies because I know they’re made up. But I’m laughing and crying that the force beat the darks Yes, crazy is ridiculous.
Rev David Hazeldine 1:08:12
So that added to the Don’t get excited. But thing. I would say also, that one of the hardest things for us as a family to get to grips with is talking about this. What’s called emotional lability? Because it’s an unseen but very real dynamic. Where the language you’ve had to start to employ as we call it, or the ability, so I can’t say sorry now for getting angry, but I just don’t have the control.
Rev David Hazeldine 1:08:43
I can’t, you know, sorry for doing, you may say a joke, have a little chocolate, and move on with the conversation. I’ll have a fit for 10 seconds, and it’ll become awkward and embarrassing. So I’m learning these techniques, and my family’s learning them, but we’ve had some quite difficult times to stress over it. And that is one of the things that’s affected all of us.
Bill Gasiamis 1:09:07
Yeah, emotional outbursts. I was angry, then definitely crying a lot. And, yeah, I couldn’t control it for quite a while I’d be on stage and cry. But that was good, because then that ropes the audience in even further and you make them you make them yours now. So they’re kind of like I saw it. I saw the fun side of that. And I thought, Okay, I’m going to be okay with this. What happens?
Rev David Hazeldine 1:09:36
But it’s the very first time that made me quite insecure. Yeah, because I spent my life speaking to large groups of people up to 1000 people at a time. And I’ve never, ever suffered from self-consciousness always been quite a confident, bold person. But for the first time I knew that I looked and sounded quite disabled and I was a bit embarrassed Yeah, so whenever I preach now, which is usually about twice a month and different churches, when I’m gonna share my story, I have to say rather beginning.
Rev David Hazeldine 1:10:08
Look at my wife. If you see her nervous, then you get nervous. For this. She’s casual, you be casual, like an air stewardess. You know, if you see them running around the plane, you got to be nervous. But if a plane is jumping up and down, and they’re just walking back and down serving tea and coffee, just relax.
Rev David Hazeldine 1:10:27
So I say get out your phone, look at BBC News. Listen to us for a song or something. Let me just gain control. And then we just carried it on. And cannot just say congregations are fantastic about it fantastically well, because obviously, it’s quite an emotional story, reliving this insurance feature videos. So yeah, that’s one of the things that has affected our whole family.
Bill Gasiamis 1:10:53
So the book has been out for a little while, or, yeah. When did it come out?
Rev David Hazeldine 1:10:59
I must say, I can’t remember the exact date it was in April time. Yeah, so we’re selling, we’re selling copies around different churches that we go to in the UK. And it’s available on Amazon for the Kindle version, obviously, worldwide. You can also get the paperback version on Amazon, UK. But you can get the paperback version worldwide through faithbuilderspublishing.co.uk. and when you’re on that website, you have to go to their shop. And it’s it comes up you can buy their faith builders publishing.co.uk.
Bill Gasiamis 1:11:38
All right, we’ll make it we’ll make sure that we get all the links and instructions from you. So that we can put that on the show notes. And people can follow that there. Yeah. It’s been a very lovely chat. Thank you so much, and nice to meet you. And you. And I appreciate your take on the whole God and stroke thing because I think it’s an important conversation that a lot of people need to have.
Bill Gasiamis 1:12:08
I think a lot of people will, some will find God and some will move away from God because of what happened to them. Yeah. And whatever stage of their recovery, I hope that they’ll listen to our conversation with curiosity and at least make them think about where they’re at with their faith and with their recovery and what they have to do to change things if there’s change is necessary.
Rev David Hazeldine 1:12:36
Yeah, from my point of view, I just say if anyone’s desperate, many people get desperate. I struggle with PTSD. And I struggled with suicidal thoughts for one particular moment in that recovery. And we get low and things go wrong, after recovery as well.
Rev David Hazeldine 1:12:53
And I would just say if you’re that low, and you have some kind of faith, or some kind of hope in the universe, or whatever you might call it, just specifically, say, God, have mercy on me discover the power of mercy and see things begin to change. Let him help you. That’s why mercy is about helping those who can’t help themselves, and God loves to help people.
Bill Gasiamis 1:13:20
On that note, thank you for being on the podcast.
Rev David Hazeldine 1:13:23
Thank you.
Bill Gasiamis 1:13:24
Thank you for joining us on today’s episode. To learn more about my guests, including links to their social media and other pages. And to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes. If you would like to support this podcast, the best, most important most amazing way to do it is to leave the show a review on Spotify or iTunes.
Bill Gasiamis 1:13:49
It must help the podcast reach more stroke survivors who are looking for this kind of content, and who will hopefully need something to make their recovery journey a little easier. So if you’re watching on YouTube, comment below the video I answer all YouTube comments.
Bill Gasiamis 1:14:10
So I’m looking forward to reading the comments from people watching on YouTube, like this episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice. Thank you for being here once again and listening. I appreciate you see you on the next episode.
Intro 1:14:29
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Their opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:14:45
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Intro 1:15:08
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Intro 1:15:47
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