Loss 32/101: Loss of physical ability after a stroke: Peter Ellis

#047. Peter had big plans for his retirement. But within months of his career ending, while gardening at the Georgian house he was renovating with his husband, he felt a pain like a bee sting shoot up his arm. This turned out to be the first sign of a massive stroke which would see his retirement dreams being cruelly torn away.

This is The Silent Why, a podcast on a mission to open up conversations around grief and to see if hope can be found in 101 different types of loss.

Loss #32 of 101 - Loss of physical ability after a stroke

In March 2018, not long after he’d retired, Peter Ellis from Norfolk, England, was in the garden when he felt the effects of the start of a massive stroke caused by a brain bleed. 

Peter spent six months in hospital and is still continuing rehab four years later. Despite regaining some mobility he still suffers with paralysis of the left side of his body which impacts his mouth, left arm, and foot. He's also been diagnosed with epilepsy and has had falls resulting in fractures of the hip, pelvis and shoulder. 

And because a stroke affects the brain it can change emotions and behaviour too, and Peter also has to deal with emotionalism, which results in bouts of crying. Something he rarely did before the stroke. 

Peter has faced an enormous amount of loss and is still coming to terms with, not only the physical abilities he’s lost but also the loss of his retirement plans and dreams, loss of independence and loss of control.

Peter’s experience is a challenging one, especially for any driven, motivated man with big plans for their retirement. Peter, and his husband Duncan, were looking forward to renovating their Georgian house together, and Peter has also had to watch the effect his stroke has had on the life of his partner too as he cares for him at home.

This conversation is an honest look at how a stroke can impact someone’s life and the complicated list of losses that follow. Peter is using writing as a way of processing this journey through his blog, and is relearning the joy of small achievements and a new appreciation for those with disabilities that he’d previously cared for himself. It’s a testament to how even in some of our darkest days there are still some things that just insist on rising to the surface to get our attention, and it’s not just hope (like we focus on on the podcast), but faith, love, and a sense of humour.

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Transcript

Peter: 0:02

Hello, my name is Peter, Peter Ellis. And four years ago, I had a massive stroke, which has left me severely disabled. And through that I've experienced a huge amount of loss.

Claire: 0:16

This is The Silent Why, a podcast with a mission to see if hope can exist in 101 different types of loss. My name is Claire.

Chris: 0:23

And I'm Chris. And in this episode, we dig into our 32nd loss with the help of Peter Ellis from Norfolk in the UK.

Peter: 0:30

The doctors are coming around around and I just started crying. And actually one of the nurses came over and just held me. And just, it's like, I can't believe this happened to me. You just think, well, I'm going to get better soon. But of course now realise you don't. Or you can't, not entirely.

Claire: 0:44

In 2017, Peter had big plans for his retirement having spent his career working in health and social care and the NHS, from time as a nurse right up to Chief Executive of a children's hospice in East London.

Chris: 0:55

However, the following year, all this changed and Peter found himself in a world where he was the one needing care when he suffered a massive stroke. A bleed on his brain, which nearly took his life, twice, meant he had to deal with watching his retirement plans fade in front of him.

Peter: 1:10

I've lost a lot through retirement anyway, as you leave your job. This was just compounding it really, having had a stroke, which means that a lot of things have been brought forward as it were in terms of letting go. One of the big things amongst many things is loss of your independence. It's about my loss of control in my life. Sitting in a wheelchair, or just sitting in a chair, while others are moving and walking around you and you can't do it yourself. That's just awful.

Claire: 1:33

Peter spent six months in hospital and he's still continuing rehab four years later. Despite regaining some mobility and his cognitive function largely unimpaired, paralysis of the left side of his body still impacts his mouth, left arm and foot (which needs a splint to help the foot not drop). He's also been diagnosed with epilepsy, has had falls resulting in fractures of the hip, pelvis and shoulder, gets dizzy, and because a stroke affects the brain, it can change emotions and behaviour. So Peter suffers with emotionalism, which results in bouts of crying, which was completely new to him after the stroke.

Chris: 2:05

Compounding these physical losses of the unwelcome changes to his retirement plans and dreams, as well as the loss of independence and control, which is still coming to terms with. But small steps physically, are now big achievements he celebrates.

Peter: 2:19

I went there first in a wheelchair, I wasn't walking at all really, I was walking with a stick, just across the room, perhaps. But now I've got off on feet and start to walk without a stick that is quite amazing. Never thought I'd be able to do that again.

Chris: 2:31

Peter's experiences a challenging one, and this conversation offers an insight into the pain of losing control. If I lost what he's lost, I can imagine the darkness I'd spend time in waiting for my body to heal, while hoping everything will return to 'normal' in inverted commas.

Claire: 2:47

One of the things Peter has used to process what he's been through and help others is writing in the form of a blog, and now his first podcast interview.

Peter: 2:55

The sort of tension between acceptance and restoration, and it's about accepting what's happened to you. And working through your grief as a part of that.

Claire: 3:03

We began our chat by asking him to describe a typical week for him at the moment.

Peter: 3:08

My name is Peter, and I live in Diss in Norfolk. And we've been here about I think five years now. And my normal week has been until recently, quite ordinary in terms of day-to-day living. But mainly we've been going to the gym twice a week so that I can do my physiotherapy and physical exercise. And that's been brilliant, because it's really helped me towards my recovery. But recently, I've taken a break from it to give myself a summer holiday and review. So my normal week has been quite busy with gym, but now that's stopped. So it's very quiet.

Claire: 3:47

Why don't you take us back to your early retirement in 2017?

Peter: 3:51

Well, I was Chief Executive of a children's hospice called Richard house, which is based in East London. I had worked there for 18 years. I was passionate about it. It was my life and I set the organisation up basically, we had a founder Anthea, but I took over from a project manager and became Chief Exec, the first one they had. And that was for 18 years I saw the organisation grow from sort of ground zero right up thoroughly, thoroughly loved it. Thoroughly loved all the work involved, but also the kind of networking I got involved in as well. Then I took early retirement in August 2017, because I knew that I wasn't quite well. And I was just beginning to enjoy doing some work on our lovely old Georgian house, which is 500 years old, and needs a lot of restoration. So we were in the middle of that, in fact, when I had my stroke.

Chris: 4:42

As you mentioned there where you were leading up to retirement and what was a real sad end of a chapter really handing on what had been your, your baby and work for so long. You mentioned you weren't feeling great at the time, but did you have big plans for retirement? Were you expecting this whole sort of new chapter of freedom of time to spend on activities?

Peter: 5:02

Yes, indeed I was as well as doing the work on my house. I was looking forward to doing some consultancy work around probably palliative care and working with others around that, I'd just started to do some work with a children's and adult hospice, about how they could develop their service around the work around the what's called the Public Health and Palliative Care Approach, which is involving the whole community and supporting people who are end-of-life, and a very exciting concept to me. I'd been working in that field and working with hospices, or beginning to, and how they can engage with that and do that. So yeah, I was just starting that, and then this happened.

Chris: 5:39

Out of nowhere -the stroke, absolutely no telltale signs just completely blindsided you?

Peter: 5:44

Just the day before, in fact, I had this funny sensation, I was in the garden, and do some work pulling some bushes out the garden as you do, and felt like a bee sting on my left hand/arm. And it went straight up the arm. And I just thought, 'Woah, what was that?' So ran inside, pale as anything, and hot, looking dreadful. And then I calmed down. And I thought, 'no, that was nothing'. So I went again into the garden, the next day went for a bike ride dropped into the GP thinking 'probably got to see them about this to say what on earth happened here? Do I need to have a checkup?' And they had no appointments that day, so I thought, 'Oh, I'll leave it' and then Duncan and I went to a funeral which he was leading. And I drove all the way there, drove all the way back, and then went into the garden, going to do some more gardening. And I thought to myself, as I went in there, 'I wonder if it's gonna happen to me again? Let's just try'. Just sawing some some branches off the tree, just as I was doing that, bang, it went. And I stumbled across the garden to a bench and I just thought'what on earth is happening to me?' And thought, 'well, it'll pass like these things do.' You know what? It didn't pass, and my left hand just flopped to the ground, and I immediately knew'Oh for goodness sake, I'm having a stroke, I can't believe this!' And strange thoughts went through your head when that happens. First thing was, 'Oh, my goodness, I haven't made a will., what's going to happen to my stuff?' And second thought was, 'I've got some stuff on the top floor in these blue boxes, and who's going to, what's gonna happen to all that now? Who's gonna sort that out?' I thought,'For goodness sake, man, you're about to go unconscious, you're probably dying, and you're worried about blue boxes, with your toot inside!'

Claire: 7:23

That's fascinating that your mind went there.

Peter: 7:26

Yes, I know. My mind was maybe thinking about all the other things you could be thinking about when you're dying about family, friends, and so on and so forth, and where it's going to happen to you now, where am I going to go? You know, really strange thinking,

Chris: 7:38

Presumabl, then, there was some call for help. And the next minutes, days, hours, weeks were spent in the hospital, recovering, investigating what happened?

Peter: 7:49

Fortunately, Duncan, my husband, was sitting upstairs in the library (very pretentious!), and looking down the garden, saw me collapse, he's on the phone, came running down with his phone because he could see something had happened. And he called for the ambulance. I remember going through the garden on the ambulance trying to eventually got there because I kept saying,'Where are they? Where are they?' because I was still conscious just, and got on this trolley, and then vomited over the side of it. And there's a child there because we called our builder who's got a young son, and I thought, 'oh, a young boy doesn't like that, doesn't want to see like a grown man, collapsing and looking ill. Then I said, 'Take those dreadful shoes off my feet! I will not be seen in A&E with those awful shoes on my feet!' So I made them take them off, went in the ambulance, can't remember much of that, and in A&E, a strange thing happened in A&E actually. I found myself I felt looking down on myself and they were categorising me. Now having been a nurse, I know what it is to categorise a man, and I'm there thinking 'now make sure you put the lidocaine up the urethra, and make sure you blow the balloon up with water so it doesn't pull out again'. And that was me looking down on myself. It was kind of probably that near death experience looking down, I don't know. I was in hospital actually for six months. The first few weeks I was in the acute side of the hospital. They wanted to observe me in the first 10 days and they did, and they could see that there was sudden deterioration. So I was transferred to Addenbrooke's Hospital where I had neurosurgery where they drain the bleed, because mine was a bleed and not a clot and apparently it was a bleed as big as a fist, which is not helpful in dealing with your brain. And they had to drain that eventually. The thought of having my head cut open is just horrific. That I was in rehabilitation in the Community Hospital in Norwich and that was a long, long summer, I was desperate to go home and then eventually when they started getting me moving first they sort of move trying to move me and I'm screaming out in pain because my right knee with the arthritis just wouldn't move very well without a lot of pain. So the first time that was starting to happen, this care assistant came through the curtain and said 'Now, you Big Girl's Blouse, you're gonna get yourself out of that bed now!'. And I said to 'You, young woman,' I said, 'I'm calling you'flossy knickers' from now on!' Because I used to have nicknames for my staff, when I worked. Then I gave each member of staff a nickname, which actually really helped because it brought some fun and laughter into your experience there, they used to take me to the shower, and I used to say 'Come on, what are we going to sing today?' Because I thought singing is going to help as well, get us through this whole awful situation. So that was quite an interesting experience, to be honest.

Chris: 10:23

I think it'd be worth just highlighting the effects of the stroke. You've mentioned your left side. So is there partial paralysis of your left side, arm, leg, face? You know, how would you describe your physical impairments now because of the stroke?

Peter: 10:40

Yeah, it's the the arm and hand, only just about work. I can squeeze with that left hand, but I can't pick anything up, if I wanted to do anything else like play the piano, I can't do anything like that. There is a lot of weakness in my left leg. So I've just started begin to walk, but in a very feeble way, I have dropped foot, which means I can't literally put my foot to the floor and walk because it would turn right over and I'd probably break my ankle. So I have to wear a splint on my foot into my shoe. So there's another loss, not being able to walk on the seashore, for instance, and just where's the sand between your toes and the sea. Again, I'm sure there's a way around that but the thought, I can't do that, you know? So yes, that's that's that's the weakness on the left hand side.

Claire: 11:28

Sounds like you your brain function was quite good. Was that all the way through?

Peter: 11:32

Yes, it was. Fortunately, for me, there had a lot of physical impact from my stroke, which is the left sided weakness, and can't move my left arm or left hand. But cognitively for me, fortunately, I was okay. And then I had my first seizure when I was home and then diagnosed with epilepsy, oh joy. So that was horrific actually having those whose seizures, I don't wish those on anybody, I was admitted to hospital several times with that, then eventually got diagnosed with epilepsy, fortunately, now it's been controlled by medication. And the good news is that if you're one year passed a stroke, and two years passed your seizures, you can drive again and get your driver's licence back. I'm just so excited about that, just been down in the garage today, to look at a car that I might want to take on. They have the adaptive steering wheel, because I'm about to get my licence back. So I can't tell you how exciting that is. To get some independence back again, one of the big things amongst many things is loss of your, your independence, awful it's about my loss of control in my life, because of what's happened to me.

Claire: 12:38

Do you remember a point when sort of mentally and emotionally you had to come to terms with what had happened? Was there a definitive point there? Or was it just a gradual process as you went along?

Peter: 12:48

It's been a very gradual process. I remember one occasion on the ward soon after I was on there in rehab, the doctors were coming round and round and I just went, just started crying. And actually one of the nurses came up over and just held me and just, it's like, 'I can't believe this happened to me'. You just think 'Well, I'm gonna get better soon'. But of course now realise you don't, or you can't, not entirely. But yeah, it's just been a very gradual process. One of the things I've, in fact, it was at work we used to do this it's about the sort of tension between acceptance and restoration. And it's about accepting what's happened to you, and working through your grief as part of that, but at the same time, working towards the restoration. So that means a lot of physical activity and exercise and physiotherapy, and so on and so forth. But there's a, there's a kind of stretch between the two, the restoration acceptance, it's a dual process model, if you want to a theory. So I've found that quite helpful in terms of begin to understand what's going to happen to me, but your question was, did you have the time when you came to accept what's going on? Well, I remember soon after I came out of hospital, I was, two things really, one was I was lying in bed, looking at the garden, which was beautiful, and actually saying to God, 'okay, if I'm going to die, then please will you help me, get myself right with you, and right with other people on this earth, so that I know that I'm ready to go. And if I can do that', I said 'that could really help me understand how I'm going forward. But just need to know if I am going to continue living, please tell me how I'm going to do that. And please tell me what I can do. Because I can't live the rest of my life like this. The thought of it is just...' I can't tell you how awful that is, the thought of not being able to do all the things that you wanted to do. Not be able to use your left arm and hand which inhibits us so much, that we now have two hands to do things. I certainly can't ride my bike again, won't do much gardening again. I can do it, but... That's the other thing. Part of the acceptance thing is you can say 'I can't do it', when actually, there may be ways around that. You want to bring the positive elements into it, being able to think 'right, if I want to ride a bike again, maybe I think about a three wheeler or four wheeler', and I've actually practiced that with the physio as well, which is great. So that could happen in the future. I'm not ready yet, by any means. Gardening, I can sit maybe on a stool or something, raised beds. But of course, none of it's what it should be like, that's what's difficult about it. You can't ever go back to where you were before and that's the acceptance part of it all.

Chris: 15:28

There's clearly a spectrum of things to grieve while you recover from such a massive thing as a stroke. I'm interested to to ask whether it's really challenging to differentiate what's a permanent loss? And what's a temporary loss? Because much of it sounds like rehabilitation. So there's a temporary loss, like with the epilepsy you mentioned, and getting your driving licence back, there was a short-term loss to grieve that hopefully, there's good news coming because you can recover your driving licence. But from day one, were you told you have lost this permanently? Or is that what you've been working out ever since?

Peter: 16:03

Yes, I think you're right, it's the balance between the two, have to say statutory services are not very good at giving you hope, which for me, is one of the big things, having some hope in there. And this whole thing, if you don't get, say, if you've not had any particular recovery from the first six months in your physical recovery, then you are not going to get it at all. And that's just 'what?!' you know,'that can't be right'. But actually, the theory is, research says, there is often opportunities to get some recovery, and there's a number of programmes out there to help you do it. So the evidence is, that's not true. But that's what people are told. So that's not great in giving much hope,

Chris: 16:45

Is there a loss that you can identify as being the most painful to recognise, or the most challenging to recognise? Has there been one that's had the biggest impact on you?

Peter: 16:57

A number of thoughts, go through my head. Okay, tell you what it was, I won't be able to pay my piano again, I used to do worship at church. I haven't done that for long time, I have to say, but just for my own personal enjoyment. And that's been very painful, because I can't use this arm. So you can't, you can, you can play with one hand if you want to, but I'm just not motivated to do that at the moment. So not having that left arm to play the piano has been quite devastating, actually. But it means in lots of things you can't do things because of the loss of your left hand and arm.

Claire: 17:31

I think a lot of people probably wouldn't realise that. There's a lot of ongoing smaller losses that come with the overall loss of something like this, especially with a medical condition or diagnosis that changes everything. And on your blog, I saw you mentioned that you had to get rid of some shoes, because your left foot was too swollen to wear them. And so losses like that, that they're still big things to go through. Have you found ways of navigating these?

Peter: 17:56

Interesting you say the loss of shoes, and lots of them with my old work shoes and they needed throwing away anyway, but I wasn't ready to let them go. So I think that's part of one of the things about, are you ready to let these things go? And retirement is time to let things go as well, because you've left work and you you've come to a different status in your life. So you've lost a lot through retirement anyway, as you leave your job. So this was just compounding it really having had a stroke, which means that a lot of things have been brought forward, as it were, in terms of letting go. I think letting go for me has been the big thing that I've learnt, and how to do that. Letting go and then thinking about how you move forward and look to the future in a different way than you would have been before.

Claire: 18:41

How has this compared with some of the losses you'd faced previously? Is that because of the amount of dimensions to it?

Peter: 18:45

Oh, interesting question, because I think I've tried to see this, what's happened to me and looking back across my life Yes. And because looking to the future, it's just very as that each time you have a loss, it's like a platform to difficult, very painful, not being able to do so many things think about moving forward to the next step and stage in your again. The loss of your physical ability, I haven't lost much of life. And in the past, when I've sort of looked back, the divorce of my parents was hugely challenging, given where we were coming from, moving on to college, after having quite a difficult school life was a loss in itself. The school life was, I thought I lost a lot of childhood, and then moving forward into college and how great that was. So those are kind of some of the lessons I've learned along the way. But the stroke has just compounded that now. So now you've lost, just lost, you've had your retirement stolen from you, it's gone, and that's you know, that's what's been very difficult to come to terms with. And I'm very good at the theory of thinking about'loss of the platform move on', but where do we go from here? Because stroke means that you've lost so much, you've lost you know, almost everything in your life at one level. I think this is the worst loss by far. The others have been very painful and difficult in some ways, but this by far has been the worst one. the most of my cognitive skills, fortunately, but just as you can see, now, my mouth is not behaving itself, and my speech is not very good. So that's been a loss as well being able to get that restored as much as I can.

Chris: 20:33

As you have had rehabilitation since having the stroke, have there been many sort of celebrations of things that have come back of improvements that have been sort of felt and made?

Peter: 20:46

In rehabilitation, they should get me a sling out of bed into a chair and I used to slide out of it onto the floor, had no core strength at all, and had to re-teach myself how to get that back. So when they got me on my feet, the first time, I had what's called a vasovagal and I fell right back on the bed, I fainted. And then to get on my feet eventually, and to start to walk, albeit with a frame - was just amazing. And now subsequently, in the last two or three years, I've been able to, when I've been going to the gym, I went there first in a wheelchair, and I wasn't walking at all really, I was walking with the stick just across the room, perhaps. But now I've got up on feet and start to walk without a stick. That is quite amazing. Never thought I'd be able to do that again. So that you know, it's been incredible, I used to have a stair lift until recently, in the last few, being able to walk up the stairs, holding onto the handrail, without the stairlift, without anyone behind me. And of course, we got two floors or three floors, and here in this house, I can get to the top floor now. That has been amazing as well to be able to do that. So yeah, these are small, small, gradual steps, it just takes a heck of a long time. And I want it now! It's just taking time to get there one step by step. And when I see people who I perhaps haven't seen for the last few months, this say 'Oh you've made amazing progress, Peter. Wow, how good has that been?' I think'Yeah, great. I just want to get back to where I was before, if you don't mind'. I don't need to be told, I've made amazing progress, which has been very small, incremental steps, I want to go back to where I was, if you don't mind, but they are have become mini steps that have happened to be celebrated.

Claire: 22:28

Has it given you an appreciation of the small things? Or is it just frustrating?

Peter: 22:32

It certainly has. I used to run a children's hospital, as I said before, and we've got young people and children who are in wheelchairs, I now begin to understand the frustration. And the difficulty is to be in wheelchair, and access for disability as being a big thing in my professional life, and now, boy, I can see it personally. I'm quite often tempted to go and run people down on my wheelchair - 'Get out of my way! I'm coming through!' But being able to get into, say shops, and restaurants, whatever, who always have high steps, thank you very much, and no handrail to hold onto to pull yourself up, all those kind of things, you know, I can now see how important it is to be aware of disability and how you can put access for people.

Chris: 23:19

I think you'll have experienced, what many people talk about, firsthand, which is just how accepting children are of illness and disability, but there you are in your wheelchair with a lifetime of able bodied experience behind you, you must have encountered a real range of emotions. Have there been any very common emotions that you think you felt keenly more than others?

Peter: 23:38

Well, I cry a lot, have to say. And of course, I think part of that they call Poststroke Emotionalism (I got the word out there!) Which apparently comes just because your brain is being affected. And so you are going to get distressed. But there are times that happens quite frequently, when I can just say, bang, down it comes, just something small can happen and I just descend into tears. And it's just the thoughts going through your mind, 'I cannot believe this has happened to me', and 'I cannot believe I'm not going to do all those things I wanted to do, indeed, all those things I wanted to do right now'. I probably described it before, it's just this distress that comes over you. And it feels like a pressure coming through your body, and it has to come out somewhere. So I feel it's very important to express it and not just hold it down. I can't anyway, it has to come out. And I think that's good to be able to do that, especially as a man. I wasn't like that before. I was very much in control.

Claire: 24:37

What's your relationship been like with the question'why?' And asking that?

Peter: 24:42

The first time I kind of wrote a blog about that 'why', people came back and said 'why not?' And I actually thinking about it, the more you think about my thing, so yes, why not? Why not me? Or why not somebody else? You know, so it's a case of why shouldn't it have happened to me, this? Because we're all subjected to the frailty of life and we're on that thin edge between life and death. So there's no reason why it shouldn't happen to any of us, this, we just don't know what's around that corner.

Chris: 25:12

And you've clearly taken your experiences, and it's been a fuel to share it with others, and maybe help others along the way. Have you had much or any feedback from people that have benefited from hearing about your experience of reading your story?

Peter: 25:27

Yeah, it's interesting. I get responses from people you weren't expecting to hear from. And a lot of people say to me - keep writing, I think it's really important. Now, it may be cathartic for me, I don't know. But several people have said, yeah, how useful it's been to hear about my experience and how it can, you know, how it makes them think. My objective was that this could be useful for people that maybe have a stroke or similar, and that sense of loss, but also useful for health and social care professionals, how to support patients or clients, in terms of their loss, as well. And to have, hopefully, a better understanding of what's going on inside you as someone who's experienced this. So that as a professional can think about how they can help others, have an understanding of it.

Claire: 26:15

What would you want people to know, you know, when people listen to this, I could see myself becoming quite angry about a lot of things that suddenly this has affected me in this way, and I don't really have a platform to tell anyone about it, or try and make change happen, because I'm still trying to rehabilitate myself. So what would you want people to know about what it feels like to be in your situation? Or things they could do that might help?

Peter: 26:40

Very good question. And, yeah, the practical things are, if you could think about putting handrails in certain places and think about how you could make, if you have developing, or building a new place, then think about the width of doorways, for certainly for wheelchairs. And also the same for, you know, bathroom facilities to make sure you can get a wheelchair in that space. Again, you've got good handrails, and so on, not like the place I was the other day, where I pulled the handrail down, and it just pulled out of the wall! That was very good. Had a good laugh with the receptionist about that, said'I've just probably destroyed your toilet, they just pulled the handle out of the wall!' But yes, that's a practical level. But I think on the emotional level, you need that greater understanding what it means to have lost what I've lost. I had a story from a while ago, where I was with some friends, and one of their friends came in, who'd only met me once, and went across and whispered to them;'What's happened to Peter, that's he's in a wheelchair?' and they explained I'd had a stroke. So he came over to see me, he'd just retired himself. And I said to him, 'how's your retirement?' And he said, 'Oh I love it, it's wonderful. The things I've got planned.' He looked to me and said 'Of course, you, you've just got to think about new ambitions, new goals. And, you know, that's the way you've got to deal with it'. And I thought, 'Do you know what, matey? You will walk out that door and you will be able to achieve the goals and things you wanted to do, I can't'. And I just really wanted to shout at him. 'How dare you say that to me? When you can carry on with your life and do all the things you want to do, as far as possible, I can't, I can't do that anymore. I have to sit here'. And the frustration sometimes sitting in a wheelchair, or just sitting in a chair, while others are moving and walking around you, and you can't do it yourself. I'll tell you what that is, that's just awful. And it can, you just sit and watch people. And quite often you have to wait until someone comes and talks to you or someone perhaps comes to help you or something. But just to sit and watch people do all the things you want to do, can be well, you know, I don't need to say anymore. And quite often I've thought to myself, a lesson here is that if you know you're going into a situation where you're going to get upset because you're seeing something that somebody's doing and you can't do it, walk away, or move away from it, just get away, because otherwise you're going to get yourself so upset, and it's not going to help. So sometimes, if someone like me walks away from you, it's not because I'm being rude, it's just that they're thinking they've got to get away from this because I'm gonna get jolly upset.

Chris: 29:16

Have there been things that you've identified in conversations, things that people can ask you or particular questions that are quite helpful, if they take an interest?

Peter: 29:28

Yes, I had a friend a while back now he came to see me, hadn't seen him for a long time, and I've known for years and we were listening to him actually, being very holy! 'It is it as well with my soul', and he started crying, I started crying and he just held my hand and said, 'Peter, I cannot believe this has happened to you'. And for me the important thing there was acknowledgement. It wasn't saying 'I'm sorry', it wasn't saying you know 'how you're going to get better?What are you doing your restoration, your physical exercise?' I was just saying, I cannot believe this has happened to you and just acknowledging this and acknowledging the pain and acknowledging the fact that, you know, there's a lot of things I can't do. For me as well, it's important that as a friend he did that, that meant an awful lot to me. The cards I received well, I've got about over 200, I think, cards. And that meant a lot as well, that people were again, just acknowledging you, just saying they're thinking of you. Yeah, it's just, it's just being there for you. And not telling you that, you know, you're gonna get better necessarily, because you know, that's not true. But just being, sitting with you, whatever.

Claire: 30:40

What advice would you give to somebody who's just in the earlier days of maybe going through something like a stroke, or something that's really inhibited their mobility in some way? Are there any things you'd like to, you'd want to say to them to to encourage them as they're on that journey?

Peter: 30:56

It's not going to get completely better. But there are some positive things that will come forward, you will find yourself being able to achieve perhaps, maybe new dreams. Despite what that man said to me, it's true what he said, I didn't want to hear it at the time. But things will get better in a bit. For me, there's been new things I have learnt as I've gone along the way, which has been very, very useful.

Chris: 31:21

And for yourself personally, how do you view the future? How do you view the the weeks and months and years

Peter: 31:27

That's a good question. Yeah, I see that I will continue ahead? to develop my thinking, hopefully, from what I've been through, and how I can use that, again, as a platform. But in the way you've described earlier around, how can I relay what I've learned to other people in a useful way. And I think that's one of the big things for me, as well as some of the practical things I want to do. Get back behind that steering wheel might be great. I'll be going to Waitrose again on my own. And, also to be to be able to restore this house, which I have to say it's really exciting. And it's not because the fabric of it, which I really love and enjoy, but also because we can use this now, this place, for other people. And that's been really important for me, we were originally intending it to be like a b&b, Airbnb. But that might happen. It might not. But hopefully, we're looking at could this be a place for respite for people on a retreat, because it's beautiful. And we've got a lovely garden, one and a half acres of it. So it could be a really good place for people just have time out. And if we could share that people and do that, that will be amazing. And I think that's one of the things I'm learning as I come out of this. There's a way of thinking, what can you offer back to people and to organisations as well, in a meaningful way.

Chris: 32:49

Occasionally, we have guests on the podcast, who talk about having really wrestled with avoiding comparison, and comparing their own circumstances and situations with others. I imagined for yourself, having had the control, maybe the responsibilities that you've had over the years with your work, and now having to watch others do things that maybe you wish you crave to do yourself, that has also been a fairly big challenge mentally, to not compare yourself or try and do what you see others doing around you.

Peter: 33:21

And that's what's been really hard. You picked up that word crave, and that's been really important. thinking, 'Oh, I really want to do that, but I can't'. But again, you have to get away, walk away from that and think, okay, what can I do? That perhaps I wasn't going to do before. Timeout, thinking, writing, listening has been really important reflecting about things, but please don't tell me to do jigsaw puzzles and crosswords, cos I'll kill you! I really don't want to do that, I got a friend who just wants to do that now through her retirement. I'm thinking please! and listen to the birds. No, that's not for me.

Chris: 33:58

That's not for you.

Peter: 33:59

No, no, no, no.

Chris: 34:00

Well, that that that very small thing you mentioned there just about sort of thinking differently, which is not an easy thing to do. So and you know, in the four years since your stroke it has that got easier, as time being the biggest helper for changing that thinking to not compare myself with others to think differently. Has that been about time? Have you been quite intentional in having to make the choices?

Peter: 34:20

Yes, I think time has helped. But I think it pings back and forth, because you can go for a really good day today, off we go. And then next day, bang, down you go. So that's you go through that kind of up and down. So as things continue, but I think, generally if there's been a good incline, of seeing progress.

Claire: 34:41

What's your view of the whole concept of hope been like on this journey?

Peter: 34:46

Yes, absolutely. You need hope. That's one of the big things. Hope is just essential. And I think that's one of the things that statutory services are not very good at doing for you. They're very good at giving you the blunt truth, perhaps and therefore will not give you much hope for the future if you think about it, but there's got to be some stuff that comes out of this that is good and hopeful. And also thinking about loss being a platform from which you can move to the next phase of life. Have you heard of Richard Rohr, he's the Catholic priest, theologian, and modern day mystic. He talks about these phases in life, particularly the first and second phase, which I've always found a really, pretty interesting way of thinking about life. So you go through the first phase, which is about building, you know, reaching for the top. And then you plateau back down to the second phase where you think about, consolidate, and you think about giving back to the first phase, particularly people are coming through that first phase, this could be connected to that, I think, in some ways, or though I've been categorised in my second phase, without necessarily wanting it right now, thank you very much. I think there's something about understanding about those phases of life.

Claire: 36:01

Is there any one particular thing where you look back and you think I couldn't have done without that?

Peter: 36:06

I think I have to say, my husband Duncan, he has been a complete rock, I don't know how he's done it. [emotional] Sorry. He's been an absolute rock. Without him, I know, I'd be in residential care. He looks after me 24/7. And it's quite incredible, because it's destroyed his life as well, in lots of ways. He can't do what he wants to do anymore, not very well anyway, because of me. And that's a massive burden as well, on both of us. Devastating failure, hasn't, not just me, but those that care for me, particularly Duncan, it really hits hard. And yeah, so without him, I wouldn't be able to do what I'm able to do now. It's that sense of what we both lost, we both can't do anymore. It's impacted both of us.

Chris: 37:01

I was struck by just what you said there about, use the word destroy that it destroyed Duncan's life as well as yourself, which is, you know, it's a big word. It's a tough word. Many people might try and say, 'Oh, no, you must find positive ways of saying it's not destroyed your life, it's changed your life'. But I find in our experience, it's so important to identify and recognise, acknowledge that this isn't what we wanted, and yes, we will find ways around it. But you know, it's not what we wanted. We didn't invite it in. And we're dealing with it now. And we're changing our life accordingly. But it has destroyed it.

Peter: 37:37

I think it's about being honest about these things. And this is the reality of it. I was really struck the other day when someone said to a survivor of the Holocaust; 'so where was your God, when you were down there in the poo, basically?' And you know, actually, and he said, 'My God was way down here'. And it just really struck me, that's just really good actually, to hear that. That God is there with you, right down there, deep, in the rubbish.

Chris: 38:02

So our final question, then, Peter; what's your Herman?

Peter: 38:06

I think it's around what we talked about really and that's hope. Because if you don't have hope, then you're going to wither away, linked with faith and love, but also a sense of humour, and be able to laugh. I picked up some writing the other day around the tragic and comic, and how important it is to have those two side by side. And I've also got down here, live! Carry on living, get out there, live, and dance!

Claire: 38:32

Peter is a great example of how even in some of our darkest days, there are still some things that just insist on rising to the surface to get our attention. And it's not just hope, like we focus on on the podcast, but so often we hear the same about faith and love, and we're yet to meet someone where grief has removed their sense of humour.

Chris: 38:50

Thank you, Peter, for your courage to keep getting up, getting better and helping others, like us, with your story. We really appreciate the time and experience you've shared and your tenacity to hold on to hope.

Claire: 39:00

We'll put links to Peter's blog and his social media on our show notes.

Chris: 39:04

As for The Silent Why podcast have you rated or reviewed us yet? Several podcast apps offer the opportunity to do this and we're told it makes a massive difference to help others find our content. So make this your next job. Please.

Claire: 39:17

Also I have to give a big shout out and a huge thank you to Evelyn Calaunan for supporting me through www.buymeacoffee.com/thesilentwhy- I have a few different membership options whether you support me with just a one off fancy tea, or become a member and support the show for £2, £5,£10, £15 a month. There are different perks for different levels and Evelyn just earned herself a shout out, her name on the website and she gets to pick a topic for me to write a My Why blog on, so keep your eye out for that one.

Chris: 39:44

We're finishing this episode with a quote from Confucius, an encouragement to anyone who's found their life slowed down outside of their control:

Claire: 39:51

"It does not matter how slowly you go, as long as you do not stop."