Amir's story: a last act of giving

Amir's story: a last act of giving

What if you thought of your death as your last act of giving? Not a financial gift, but a gift of supporting the people you're leaving behind to be as ready and prepared as they can be to live their best lives. That's the perspective of Amir, a young Dad who’s recently had a health scare (and is doing really well now). Amir has started to explore the legacy he wants to leave for his four boys - and the influence that’s having on how he wants to live life now. 

Welcome to Amir’s story.

Hosted by: Sam Meikle

Produced by: Spark the Difference

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Here’s what Amir shares in our conversation: 

00:09 These conversations are all real and can sometimes be a bit raw. Remember, you can always pause and take a break for a bit. 

03:45 Amir’s first experience of a loved one dying was when he was 36 and his gran passed away from dementia. 

08:02 How Amir and his son talk about death 

10:55  The big conclusion Amir has arrived at for his own death: an ultimate act of empathy, compassion and courage. 

12:54 It’s easier to leave than be left  

19:33 What a good death looks like to Amir

22:24 Ideas on starting a conversation about death and dying

25:15 The roles that fear and courage can play in these conversations

29:15 How journalling might support you to start exploring what you think and feel about death

33:33 How the stoic philosophers talk about death (and who the stoic philosophers are!)

37:04 Flipping the frame from “I” to really putting a lot of love and generosity into the people around you

40:33  The two sides to death: our own death and the death of another.

A note on looking after ourselves: these conversations are all real and can feel a little raw. If you’re struggling with the content that we’re talking about, please seek support. This might be from a trusted family member or friend. The Samaritans Team are always available to talk and you can contact them on 116 123. 

 

The full transcript

(Sam) To start with, I wanted to ask where your accent is from.

(Amir) Probably Nottingham, I imagine that's where I spent most of my time. So Nottingham or Nottin-hum when I'm not thinking about annunciation.

Born and bread?

Yup.

Growing up, what did you know about dying and death?

Probably as much as any child. So that it happens, but not that much. I wasn't - I didn't have any amazing epiphanies when I was a kid. We had a cat that died, it was Edward and that was probably the first encounter that I had with death was our cat that we loved dearly and that was very sad. That was really my only experience of it. And growing up, I was very mindful of the fact that until 2016, I hadn't really experienced anyone close passing away. I was 36 then. And that's probably quite old to not have anyone pass away that's close to you. Which I think is both fortunate and unfortunate depending on whichever way you look at it.

Can I ask, who passed away?

It was my gran. And my gran actually worked in Nottingham. She was half French, but she worked in Nottingham as a lecturer, teaching French. She was a really sharp, witty, supremely intelligent human being. And she had dementia. It had her for four years until she passed away. So it was very slow and painful to watch someone so together and so sharp just fall apart like that, in that way. It was quite cruel to watch. And my gran and my granddad were living in France and they lived in France for probably a good 15, 20 years perhaps. So I wasn't around her all the time, but when I went to visit there'd be marked differences in to how she was the way before.

My mom basically gave up her life in the UK and moved away from her job, her family, her grandchildren to come look after her parents and she saw that kind of day in, day out. And then obviously her husband, my grandfather - who's like a proper English gent - he had been married for over 60 years and it hit him - it was difficult every single day for him. But the way that they all coped was just a lesson in courage basically. It was very, very inspiring.

How's your grandfather going?

He's all right. He's all right. He doesn't complain. He's actually been in hospital recently to have his big toe amputated, because he's in a wheelchair and he doesn't move much and so the circulation is not great. And they told him, ‘I'm afraid, Mr Stokes, that we're going to have to amputate your big toe on your left foot’. And he's just shrugged his shoulders and said, 'I don't use it much anyway'. So he quite balanced when it comes to things like that. But yeah, he's good.

How did he cope - if that's the right word - or what was his perspective when your grandma died after the illness with dementia?

I go once a year to France and whenever I've seen him, he seemed good. I only saw him cry once at the funeral and that was when we're all sat around the open coffin saying goodbye to her. And he cried for two seconds and then he stopped himself and he apologised. And that's just - he's in his mid eighties. He grew up in a time where, to be a man you showed a stiff upper lip. So that was the only time that I saw him kind of expressed any real grief around it. My mom obviously spent much more time with him and I know he misses her. I know he - his love for her continues. He's still very, very proud of the person that she was when she lived. All in all, I think he's doing pretty well.

Did you talk about it?

Yeah. We talked about it, especially Mum didn't always have people to talk to about how she was feeling over there. So we would talk sometimes about what it was like and what you're going through.

Did you talk to your sons about it before she passed away?

Yeah. So Ezra, he's only three, so he didn't really - actually, I think he might have met her, but he doesn't spend too much time around her. But Ebse, who's going to be eight soon, he spent time around granny. We explained that she was poorly and he used to ask why she was doing certain things; why she was talking in certain ways and whatnot. And we had to  explain she's very, very poorly.

And then when she passed away, we just referred back to the fact that remember how she was very poorly and very old? Well, this has happened now and she’s no longer us.

How did he respond?

He seemed sad and he gave me a hug. I was actually talking to him about death this morning - only because someone on his mom's side of the family passed away recently and he's got a bit of a fear of death. Which is normal, because I think a lot of adults do. And I think it's because we don't spend much time contemplating it and actually just getting to a point where we don't have to be happy about it, but we accept and embrace it’s going to happen. We'd have to like it, but we'd need to accept it.

I've been thinking about and contemplating my own death for a few months. Last summer I got quite poorly and went to a hospital with chest pains. And although my heart's okay, the doctor said it was a warning sign that I needed to just change a few things in my life. And then, you know, I'm turning 40 this year. I think probably both of those two things added together really just hit home the fact that one day I'm going to die. I don't know when it's going to be and I don't know how it's going to come. So I thought about it quite a bit. My brother is a music therapist and he deals with people and helps people that are end of life. I  spoke to him and he recommended me a book by Irvin D. Yalom and it’s called Staring at the Sun.

He called it that because he says it's difficult for us to stare at the sun for a long time and it's difficult for us to think about our own death for a long time. There are some pretty good ideas in that book about dealing with dying and stuff.

But the conclusion - the big kind of conclusion I've arrived at for my own death is to really realise and understand that it's easier to leave than it is to be left. So while we're going to die, we leave behind people that are going to carry on. And they're going to be carrying that grief and we're not. We're not going to be around it to feel those things right. So I think that if - as a coping mechanism and also to live life in a really full kind of like giving way - if you can actually turn your death into your last act of giving, then I think that's really a good thing to do.

And by that I mean look at the people around you and just think, what do they need to thrive when I'm not here? And do they have things? Am I giving them those things in the way that I'm living? And if not, then make some changes so that you are.

It's probably a cliche to want to die at home, in a bed, with all your family around you so you can say goodbye to people and tell them what you think of them, and tell them that you love them one last time. But the reality is it's not going to happen like that. So the antidote to that is live in a way so that if you went in the next hour, the people that you care about would already know that there wouldn't be any doubt whatsoever. So you wouldn't need that kind of end for people to feel that way. When you think about it like that it's sort of a way to live.

I was really struck when you said it's easier to leave, then we'll be left. Can we explore that a little bit more?

Yeah. Well I think it's the same in a relationship. Say for example, you're in a relationship and you choose to walk away. You've already come to terms with the fact that it's over. You're the one that's initiating that. So you've come to terms with that and although it might still be painful, the other person that you're kind of leaving could be left with a lot more pain, a lot more questions, a lot more uncertainty around that.

It’s the same in death really. It’s really - it's true. And although yes, we'll be going through something that is - it's the ultimate fear,, you can't get around that. It really, really is. But I think one way to deal with, with that uber powerful fear is to have the courage to be super compassionate and actually put yourself second. Because yeah, okay, you're dying, but they're not. They're going to keep going and they're going to keep going without you.

So while our life comes to an end, it comes to an end. We don't feel anything anymore. And we sort of reached the same state of existence as we did before we were born, right? We just don't exist anymore. I mean that's an abstract thing to get your head around anyway, but then we're not left with anything. We're not left with a sense of loss or grief. What if we're the rock that they always depended on? What if we're the Dad, or the brother, or the sister, or the Mum? We're leaving people behind that needed us.

And yes, it's hard for us. It's harder for them I think. And I think to change the frame, to flip that frame and to give it - to put the onus on them, I think is an ultimate act of empathy, compassion and courage.

And the word that comes to mind is - there's a responsibility in that, for thinking through that process; for having that awareness. And it feels a bit heavy to me as I'm reflecting on this.

Which bit feels heavy?

Putting yourself second - and if you have an awareness that the end is coming - so that planning to put your fears aside and put your own preparations aside, in the sense of the greater good of those around you that you want to leave. It's perspective I hadn't considered before.

I think there's some balance to be had, because I think what is probably an easy thing to do is completely forget yourself and bury yourself and bury your emotions in other people. And that's just avoidance and that's not healthy. So I think there does have to be a balance - with a main focus on - and maybe it's different for me because I'm a Dad? I've got two sons, two stepsons and maybe it's different for me because I'm thinking, okay, if I were to go, even when I'm like kind of old and ready: have I given them; have I taught them; have I pointed them in directions that can help them to live the life that they want? And it’s not a question of doing things for them, but just knowing that as a Dad that I've done as much as I could possibly do for them.

I think it's embracing the fact that it's easier to leave than it is to be left and turning your death into your last act of giving. They're sort of like strategies and then the nuts and bolts, the tactics are very much up to the individual to figure out because we've all got different circumstances, different things and different people in our lives. So it may be something that doesn't involve children at all - it could be anything, but I think as a strategy so far, that's the thing that makes the most sense to me.

You said I'm dying when you're old and ready. What does ready look like?

I don't know, actually. I don't know if I ever want to be ready. I'd rather go out kicking and screaming, because I always want to maintain an element of childlike quality and am wearing Spiderman shoes at the moment.

They are awesome.

Just the fact that I always want to be curious about things. I always want to be silly and have fun, at the appropriate times. I never want to lose that and I don't want to fall victim to the mental model of being old. So I want to build to do like Jujitsu into my sixties and stuff like that. I want to live, I want to live life to the fullest. And then whenever it happens, go. I think if I'm sitting down on the sofa and if I have to tell myself, or say, ‘I'm ready to die, I'm not doing enough. I'm not living right, I’ve lost purpose.’ And I don't think that you need to lose that.

I think you may have touched on the elements of this, but I wondered what the phrase a good death means to you.

I think you can only have a good death if you had a good life. And a good life I think, is to live with some purpose; grow, to perhaps inspire other people around you to be the best, to push themselves to get the most out of life possible. And then following that a good death is just accepting it with grace, accepting the fact that you're going to die with grace and understanding that it's a natural part of things and that things have been dying for billions of years. But things -  everything carries on. It gives you a sense of perspective and place in the universe and that actually it’s okay that we're going to die, because things will keep going and people that we care about and love will keep growing. I think it's getting to that place and a sense of peace with it.

Have you always had this perspective? Has it changed?

No, it's something that's literally been developed over the last few months because that's when I’ve actually really started thinking about it with any great depth. I’ve journalled about it a few times. It may well keep evolving and changing or whatnot, but that's where I am now and it feels right because it's helping to inform my life now.

Who are you talking to about these emerging thoughts and priorities?

Um, you? [both laugh] I've not really talked to many people about it. I’ve not avoided the subject. It's just felt like something that has been evolving inside of me. So maybe I haven't felt that my ideas are crystallised enough to have like a proper conversation about them. I don't have a ‘death and dying conversation buddy’, but I’d be open for one.

For work that I've been doing in this area, there feels several stages of articulating your own thoughts, beliefs, feelings and fears; and then sharing those, talking to people and then making the medical authorities or making those decisions more formalised for what you would like at the end. I've been reflecting on how you have these conversations with people because I think often we as individuals can be ready once we've articulated this to ourselves, but it's choosing the right time to spring that conversation on someone. And I knew that I've done that poorly in the past, whether it's, I've called Mum and said, ‘okay Mum, we need to talk about death and dying’. And for her it's a Tuesday morning, she's just had breakfast and is thinking about her day ahead [she lives in Australia]. So it can be quite a challenge in that even though we may be ready, how we broach that conversation with others.

Yeah, I think so. Perhaps a good way, in perhaps not-on-a-Tuesday-morning-after-breakfast, but I think you sort of have to test the waters, don't you? Because it's such a difficult subject. It really, really is. And although you might have crystallised your own ideas and might be feeling OK about it, you'd have to kind of think, well, okay, so how are these are the people thinking about it as well and where are they?

And a good test is always just asking, asking a question, ‘are you up for having a chat about this? I'm just interested to get your thoughts on it.’ And perhaps use curiosity as a tool rather than going in and kind of expressing how you feel about it. And I think there are also going to be people that will avoid the subject like the plague. And that's sort of their responsibility. And as much as we might see that people need to open up or have a breakdown around it to let the emotions out, we can never push anybody into to doing that because some people will push back hard. And that's okay. I mean that's how the they feel about it. I think in those situations, if I ever encountered that, I would probably just say, ‘well, I'm here if you need to talk about it’. Because some people will be so afraid of the subject that they will be frozen and not be able to express anything about it. Which is really sad because what they're doing then is letting, their death dictate their life in a negative way and it doesn't have to.

And fear is actually a very useful emotion to have, right? It keeps us alive a lot of the time. There are Instagram memes and motivational things about beating fear. I don't think you can beat fear. And I think that's okay. I think you can use courage to do what you need to do in spite of it, to exist with it and move with it. And then you sort of get used to it and it just naturally dissipates. So you don't need to have a fight with it or beat it. It's, it's something softer than that.

And that really resonates for me with this work. I've been reflecting, one of the big drivers for this work is my relationship with my grandmother, who is 95. She’s an amazing Italian woman, still living at home by herself, but she had a fall last year and went into hospital. I'm very, very afraid of what will happen to me when she passes. There's a lot of fear and emotions around that and was talking to a mutual friend of ours, Eric, and he's like, ‘what if she lives for another 10 years Sam? You can't hold onto that and avoid this discussion because of what's going to happen. This is something that you need to gently, compassionately explore rather than putting off until it's the right time.’ But I don't think, as you say, you can beat fear over the head and vanish it.

No, you can't. Well that's what courage is, isn’t it? The definition of courage is taking action in the face of what you're afraid of. The thing that’s scaring you. That's what courage is, and it's the answer to this. Seneca, the stoic philosopher, he talked about negative visualisation and he said that if you contemplate the bad things happening, you take the sting out of that thing happening - when it does. And I think that negative visualisation is actually a really good tool to potentially use around coming to terms with the fact that people very important to us are going to die and we can't stop it.

That's one thing that we can do. And another thing is - I mean it's sort of flipping the frame around: it's being there for them and making sure that as best as you can organically and genuinely do it, make them feel good about themselves and about their lives. If they're end of life and if they're struggling, talk to them and help them see the value that they've actually given throughout their life. Because I think we all want to feel of use don’t we? We want to feel that we've mattered, right? And we all have, but just in different ways. And the thing is we don't always see it ourselves. So if you can be that beacon of light for somebody that needs it, then you're doing an amazing thing for that person. Yes, you're loose, you're going to lose them, yes. And it will be tremendously difficult and heartbreaking. But knowing that you've comforted them and been there for them at the same time of feeling that gratitude because you're bringing those things up, I think that's a pretty good approach for dealing with that.

And you've spoken about journaling and I know you're a very reflective human - it took me a really long time to be honest with myself on the page and to see the story that was going on in my head written on paper was quite a challenging thing. What advice or tips would you give for people who were wanting to explore this in a safe space? So not with another person perhaps, but on their own - to get started on that. Do you work with questions or themes? How does it work for you?

So it works in a couple of ways for me. I have a notebook - this notebook - and I will steal away either in the morning or whenever I get the chance to make sure that I'm not going to be disturbed, or in a coffee shop where it's anonymous. I use one side of paper. That's my constraint. I don’t really put a time constraint on it, it's more of a space constraint and I just start to literally just start to write. And if I can't start, I just literally ask the question, ‘how am I?’ That's it. And I just promised myself that whatever I wrote is without judgment; it's never going to be seen by anybody else. It's literally all mine. It's all for me in and it's just for the purpose of getting things out of the swirling chaos of our minds.

And it helps to order things. And you can actually see when they're down on paper, you sort of separate yourself from them and you can  take the emotion out of things and you can say, ‘okay, well, ah, okay, so that was inside of me. That's why I've been feeling this, because of these thoughts I have now got out of me. And I can see actually they really irrational or, yeah, I can see actually I need to have a conversation with somebody about this.’ And it's really therapeutic. I think the keys are to set to constraint; either five minutes or a side of a A4. Write without any kind of -  don't think while you're writing, just let it come out. You don't need to think at all. And if you're struggling to get started, just ask the question, ‘how am I?’

That’s such a powerful question.

It's just very open ended and I think that helps people to - or it helps me at least, to just dig around and explore. It often starts with ‘feeling tired’, but then I'll just do a body scan was like, but feeling tense, Dah, Dah, Dah, Dah, Dah. Maybe I'm feeling tense because - and just don't overthink it. You're not writing for anybody else. It's just literally to get these emotions and thoughts out of you.

And I’m struck as we’re speaking - every day when we interact with people, we say, ‘how are you, how are you going?’ But it's so rare that we ask ourselves that, on a regular basis.

Well, it's rare anyone asks it and actually means it. Because it's the biggest crock of shit basically going, ‘how are you?’ And the standard response is, ‘fine, thanks. How are you?’ And yeah, it's just bollocks. It's just not true. Because if someone actually asked an answer that truthfully you'd be there all day, or at least for a large portion of time talking about things - and that moment of sonder, which is where you would understand, with a lot of depth, you understand that everybody's lives are as rich and complex and probably is painful as anybody’s, especially yours. So yeah, it's an important question. It's one that we hear too often and don't answer enough.

So wise, so so wise. Who talks about dying and death well?

The stoic philosophers, psychologists, my brother properly; anybody that is reflective some of the time, that has courage to think about these things and then that's honest enough to share them.

Can we talk a little about the stoic philosophers? I know this is a passion of yours. If someone's never heard of a stoic philosopher, what are they? Who are they? And what do they believe?

So the big three are Marcus Aurelius, Seneca, and Epictetus. Stoic philosophy isn't about no emotion, which people might think because the word has been misappropriated: you think that person’s very stoic, you think they're not giving much emotion away. It's actually about taking a lot of joy from life. It's about the domestication of emotions I would say. And not overindulging in emotions, even like grief. Do you know what I mean? Not even something like that. The stoics were all about living the good life through practicing, this approach to life, which is to domesticate your emotions and control what you can control. It's a bit like the serenity prayer. I think it's where the serenity prayer might have come from: knowing what you can control and being absolutely okay with the things that you can't control and living the good life.

You know, people get depressed at the weather, right? What's the point of being stressed out when it's raining? Because what you're doing then, a stoic philosopher would say is that you're giving your power to an outside entity. When it's yours - you could be doing anything with that. So that's it in a nutshell - and I might have butchered it a little bit, but generally that's stoic philosophy.

Why do they talk about dying and death well?

Well first of all, because they've accepted that it's going to happen. They can do so by minimising the amount of emotion around the subject as well. They will spend time reflecting on it, because of that negative visualisation technique that I mentioned earlier that Seneca spoke about. There's a lot of tools, practical tools that they would use around the subject of death, that would apply to other parts of life as well. But it just means that someone in the practice of stoic philosophy, is just very well equipped to deal with highly emotive subjects in situations because you can sort of detach, see the situation for what it is and then give it what it needs.

If you could change one thing about how we talk about dying and death as a society, what would it be?

I think if I could change one thing about it, it would be to move that frame of thinking about ourselves first and foremost  in relation to our own death. Like: ‘I don't want to die and I am scared about my death and me dying’. To change all that and to flip it around, like I said earlier, to ‘okay, so I'm going to be going. I'm leaving. I don't like it, but it's the truth. How is everyone else going to be without me? Have I given everything that I can possibly give to make sure that they can thrive?’

A lot of issues that we have in life come from self centeredness and - even at times, like in the past when I've struggled with depression, when I've got perspective on it and a lot of the time through journaling, I've noticed, it's a little bit about me. ‘I'm feeling like this, I'm doing this, I'm doing that,’ - everything's focused around “I” and as soon as you start to move that focus onto the people around you, the people that you love and that love you - it doesn't necessarily get rid of the problem, but it's certainly lightens it. It gives you a bit of breathing space. So I think it's that dynamic of optimising the time spent on “I” and really putting a lot of love and generosity into the people around you.

What I'm so struck with is this is a different approach to the paper preparation of your wills and Power of Attorney, which often we think “getting ready for death and dying” means getting your affairs in order.

Right. And sure, I'm pretty sure that when people are thinking about your death as your last act of giving, they might think if they saw the headline of that or the soundbite talking about money or wills and while that's a necessary part of it, obviously you do have to get those things - it's just that scratching the surface and they are actually really valuable things that will go missed if you don't hold that frame. If you're thinking about yourself too much, if you’re caught up in death anxiety, if your focus is on yourself - flip it around and just see how it feels.

Very powerful. As we've been speaking today, are there things that have come up in our conversation that you haven't been reflecting on, or topics that you'd like to explore before we close?

Well, there's sort of two sides to death, right? There's the side we've talked most about, which is our own death, which is actually quite a self centred thing after what I’ve just said. But then there's also dealing with the loss of somebody, right? So there's that. And it's the same end and just as final, but we come at it from different perspectives so there are different dynamics going on it. So how do we deal with people that we love that we might be losing or we might have lost.

There's no easy way around it. There's no cure for grief. I mean it's a natural part - when you love somebody and they pass away, it will be painful. It really, really would be. The stoics would say that death is an opportunity to practice fortitude. So whilst yes, you might be hurting, there are people that need looking after and that need you as well. And then also to practice gratitude as well and in fact, the start of Meditations, which is Marcus Aurelius’ diary, which was actually only published after he died. He didn't write it to be published. The first part of his book, they're all entries; listing what he learned from people around him, his family and stuff like that.

So that when we lose somebody, what have we gained from them? What's outliving their body? What have they given to us that's truly, truly valuable, that we can hold on for as long as we live? And in that sense, a part of them will live on with us. We've not actually lost them. We've lost the flesh and the blood, but the things that they've given to us - we’re actually living life at 100 miles an hour. We don't always remember. We don't always notice. So it's an opportunity to notice. It's an opportunity to reflect, to be grateful and take a piece of their wisdom, their knowledge, their spirit forward.