Something for a rainy day

Sophie Caldecott

On assisted suicide, choice, and personal freedom

write hard and clear about what hurts, Ernest Hemingway quote, quotes about writing, Ireland, cliff, coast

Yesterday Verily Magazine published an article that I wrote about how my father’s recent slow and painful death from prostate cancer convinced me that assisted suicide is not the answer to suffering. It is a sensitive and very controversial subject, and I was expecting a lot of readers to disagree with my conclusions, so the flood of indignant – even angry – comments on social media and on the article itself came as no real surprise. There wasn’t space in such a short article to go as deeply into how my personal experience is relevant to society and law-making as I would have liked, so I thought I’d address that a little here.

First of all though, I should probably clarify quite a basic point: many people object to the use of the term ‘assisted suicide’, preferring terms like ‘assisted dying’ instead. I keep using ‘assisted suicide’ because I believe that is the most accurate description of what we’re talking about here. The dictionary definition of suicide is: ‘the act of killing oneself intentionally’. Someone who chooses assisted suicide is intentionally seeking to end their own life, and they want medical help to do so. If we’re going to have an honest discussion about this, we have to call it what it is. Whether the actual act is right or wrong is another matter.

One thing that pretty much all of the objecting comments have in common is an underlying accusation that I am trying to tell other people what to do in an area where it should be totally up to their own personal choice. What was right for us isn’t necessarily right for everyone. Who am I to tell people that they can’t decide how to end their lives, that they must stick with it if they don’t want to? My father didn’t want assisted suicide, but if he had and I had stood in his way, I would have been a horrible selfish monster. And I am an awful person for telling people what they can and can’t do, right?

So, when it boils down to it, this is an argument about freedom and choice.

The thing is, I think it’s very disingenuous to claim that you are not directly impacting my life if you are campaigning for this change in legislation; to accuse me of standing in the way of your personal freedom, without acknowledging that you are doing the same to me. You may think that I can happily ignore any changes in the law that I want to, that it doesn’t have to concern me, but you’re wrong. You’re talking about making a radical change to the society in which I live, to the society in which I will someday die, and that is something that affects me in a very real way. I have every right in the world to protest that, quite aside from the personal experience I related that informs my views.

The fact that these proposed changes to our law wouldn’t just impact the select few who choose assisted suicide without affecting the rest of us really hit me when my father was dying, and that is why I decided to share our story. The very week before my father died, a proposed change to British law allowing assisted suicide was being discussed in the House of Lords, and in a horrible twist of fate, the experience our family was going through made us a textbook case for the debate. Everywhere I turned, the press was full of it, and it felt like they were all talking about us. It was as if they were putting value judgements on the last few years of my father’s life since his terminal diagnosis, crowding into my head and telling me I was selfish for being glad that assisted suicide wasn’t an option so that we could have as much time as possible together without the added stress of having to consider an ‘alternative’ to him seeing life through to the end.

As I sat by his bedside in the hospice during those last weeks with my family, utterly grief-striken, I was unspeakably grateful to the nurses who shifted his weight so that he didn’t get bedsores, who kept checking his pain relief was working even when he no longer proactively told them. We put ice chips on his tongue when he could no longer drink to relieve the dryness in his mouth. When his lungs started to shut down, my mother made sure that he was given oxygen to prevent him feeling like he was being asphyxiated (a childhood fear of his); it couldn’t make him live longer, but it made him more comfortable. We held hands and told him we loved him, over and over again.

It wasn’t about trying to keep him alive, stringing out the suffering longer than was necessary; it was about making every last moment he had with us as comfortable as we possibly could. I’m not arguing that people have to accept treatment for their terminal illnesses, though in our case we were glad to buy as much time as we could. All I am arguing is that we cannot pass a law that permits doctors to kill people, even as an act of mercy. If assisted suicide laws become widespread, our already stretched palliative care systems will fall into horrendous neglect. For every terminally ill person who claims that their choice to end their life impacts them and them alone, there is another terminally ill person whose palliative care will suffer if the campaigners have their way, placing an even heavier burden on terminally ill patients and their families than they already have to carry.

I can’t stress this point enough; for all that suffering is an intensely personal subject, in debates about changing the law it is anything but private. The motto of the hospice where my father died was ‘Believing every moment matters’. Would our society think this way if assisted suicide became widespread? Would our doctors and nurses still be properly trained in palliative care? Would it not be the case that more of us would start to think like the Lithuanian Health Minister, who has recently said that euthanasia is a good alternative where palliative care cannot be afforded, opening up the way for euthanasia of the poor?

Looking at countries where assisted suicide has been legal for a while is telling; in the Netherlands, the number of mentally ill patients killed every year has reportedly tripled in recent years. Earlier this year, Belgium extended its euthanasia laws to children and minors. Where the Hippocratic oath is scrapped, a whole host of nightmarish scenarios become possible, even probable.

Activist Penny Pepper also believes that assisted suicide threatens some of the most vulnerable members of society; not only the mentally ill, children, and the elderly, but also disabled people like herself. She argues that her life is just as valuable as any other, despite pain being ‘a constant’ factor. (That she even has to remind us of that is a mark of where this debate is heading.) She is afraid, like me, of what would happen to palliative care if assisted suicide laws were passed. ‘As an activist I want to rage, rage against the dying of the light, with every beat of my heart’, she writes. ‘I want assistance to live now; I want decent social care, left alone by government and not subject to cuts; and I want palliative care from doctors doing what the best of them do to the highest degree – helping me to live well.’

I do not want to live in a world where people kill themselves for fear of being a burden, as Giles Fraser so eloquently wrote for the Guardian.

People on both sides of the debate feel moved to share personal stories precisely because, in this case, the personal is not private. Much as my heart goes out to people like Brittany Maynard in their suffering, they are trying to influence legislation which will touch my life, and the lives of my loved ones, so I feel that I must speak out. Is she allowed to make her pain public in defence of her beliefs and choices, but I am not? Ultimately, whoever is right, I don’t think that’s consistent or fair.

Perhaps the objection to the term ‘assisted suicide’ is founded on the fact that it implies a choice. Perhaps people who seek assisted suicide don’t feel like they are choosing to die because they have already been given their death sentence, but rather that their hands are being forced by horribly difficult circumstances from which they can see no escape but a quick and painless death ministered to them by a medical professional. I understand that, and I sympathise; I really, really do. I know what it is like to reach the point with a loved one where you wish for death, knowing it will be a kind of merciful release when it comes. I know what it is like to be haunted by images of a dying face for months after the difficult passing of a loved one. I won’t deny the pain and trauma of these experiences, or try to claim I have all the answers and a neat theory of life, the universe and everything.

But, even though at first to many it may seem counter-intuitive, my father’s struggle with cancer has convinced me that if we really want to help the dying, we need to make the time that they do have left better, not cut it short. Better pain relief, better nursing, better care. That is what assisted dying should mean. No one should ever have to turn to suicide, assisted or otherwise. Some life, even when it is severely compromised, should always be better than no life.

That is what I will fight for until it’s my turn to leave this world, and if you want to call me selfish, so be it. Just remember that no one ever makes  a choice like Brittany’s in isolation, and that if you change the law it will impact me and everyone else in the society we all share.

 

Phantom limbs

a moment of calm, window, avoiding stress, the culture of busyness, health and well being

One time I sat in on a friend’s psychology lecture when I was visiting her at university and I learnt about phantom limbs, the syndrome that sometimes occurs when someone has lost a limb but still feels as if they have it. The lecturer talked about how this can be a big problem in situations where the person in question feels like their phantom limb is tensed and the muscles are clenched, causing them very real pain. They have to be gently led through the process of relaxing the non-existent limb before they can begin the process of teaching their body that the limb in fact is not there at all.

Recently, I keep thinking about this syndrome in relation to the importance of self-care. I’ve realised that I’m experiencing life a bit like someone who has a phantom limb at the moment. I have a mental ‘to-do’ list that feels like a tightly clenched fist at all times. I believe that I have to somehow manage to be the baby’s primary carer at all times, as well as earn a living, write things that I am proud of, take care of the housework, be a kind and generous friend, write letters to loved ones, be well-read, interesting, and up-to-date with current affairs, start writing my novel, found a website (you get the picture)… all without ever asking for help. Needless to say, it’s impossible to live up to these self-imposed standards.

I think it’s partly to do with working motherhood and needing to learn to balance things in this particularly intense time of life, but I also think that it’s an experience that is common to most of our generation in our adult lives. Why do we do it to ourselves? Why can’t we relax properly, even when we actually do have a rare moment to spare? Why do set ourselves impossibly high standards? It seems to me that we are all walking around with phantom limbs, carrying a lot of unnecessary weight.

a moment of calm, window, avoiding stress, the culture of busyness, health and well being, Paris, balcony, look after yourself quote

I’ve written before about how, as a culture, we need to slow down. But what does that look like on a personal level?

First of all, we have to get rid of the idea that looking after ourselves is somehow self-indulgent. I loved reading Robin Long’s piece about how guilt gets in the way of healthy living for Darling magazine recently. To be able to live to our fullest potential, after all, we need to be strong, happy, and healthy ourselves. To be able to give others our best, we need to treat ourselves well, too… and not feel guilty for it. (Repeat after me: ‘Feeding myself is just as important as feeding the baby!’)

I find making ‘to-do’ lists helpful when I’m busy and tired and constantly living in fear that I’ll forget something important. But we need to know when to stop with the ‘to-do’ lists, too, however helpful they can be. I absolutely love this article about the ‘to-don’t’ list, and am making an effort to see my ‘to-do’ list in the right way; I need to use it to jot down the essentials that I really mustn’t forget, being really honest with myself and keeping those to a bare minimum, have a separate section for a few more aspirational notes, and then forget the rest for now. This may even mean making my own ‘to-don’t’ list (I love Stephanie May’s version), to consciously think about which things are hanging over me semi-permanently that I need to mentally put to one side.

This leads me to the value of living with intention. I came across the lovely ‘Autumn on Purpose‘ project by Laken of Peach & Humble recently; the idea is to slow down in this new season and live with a renewed sense of calm and purpose, enjoying the present and seeking out the little things of beauty scattered through our lives every day. In the first of her weekly emails through the series, Laken encouraged us to make our own intentions. These are different from goals in as much as they are more general priority areas (or, as Laken puts it, ‘feelings and desires centered in the present moment’), not tasks that we need to complete. Thinking about what my overall life intentions are in this season helped me to clarify when I need to say no to something, or ask for help in a particular area of my life. My intentions are:

  • To be nourished in body, mind, and soul.
  • To be present with my family and not let this time slip past me, unappreciated.
  • To acknowledge the joy that being creative gives me, and to purposefully make time for work without feeling guilty.

I’ve started trying to drink warm lemon water first thing in the morning, and to make myself a bowl of hearty porridge. I try to get up early enough to give myself at least 10 minutes of quiet, peaceful, sit-down-and-relax breakfast time every other morning. I’m trying to bear in mind these tips for safeguarding your future health from Verily, as well as incorporate more of these joyfully easy every-day antioxidant ingredients into my life. I’ve asked for this beautiful magic carpet pilates mat for my birthday so that I have a motivation to tune in to Robin Long‘s wonderful (and free!) videos while the baby plays around me every day (everyone has a different form of motivation that works for them; mine happens to be pretty things and food!).

I’m trying to teach myself to be better at asking for help with the baby, to schedule my days better and plan ahead so that I have time to work during the day and can better enjoy the times when I’m not working and be more present with my loved ones as a result. I’m trying to switch off my laptop and phone whenever I can an hour or so before I go to bed, so that I can start to unwind properly before trying to sleep. I want to learn to follow Erin Loechner’s wonderful example of ‘slow blogging‘.

These things are all baby steps, and I am so far from having it figured out that it’s almost laughable. But I have one solid intention that I am going to try and hang on to: there are many things that I want to achieve, many things I want to get better at, and many ways I want to become a better person, but I don’t have to do it all at once. It’s okay to seek the order that I crave when I feel surrounded by chaos. And, most importantly of all, self-care is not an optional extra.

Have you ever had a wake-up call about how important self-care is? How have you learnt to handle stress and chaos in healthy ways?

Let’s make the world a better place

A Better Place, Stratford Caldecott, prostate cancer, CapForStrat, ethical lifestyle website, ethical shopping guide, ethical consumerism, Crowdfunder

I’ve been talking about a website that I want to create and dedicate to dad for some time now, and now that the Crowdfunder is finally live you can take a look at our plans and help us to make it a reality. Every little helps, and even if you can’t pledge yourself, sharing the link with anyone you think might be interested is so helpful, and very much appreciated! Here’s our campaign video so you can get a quick idea of what we’re all about, but there’s a lot more information on the Crowdfunder project page, here. We also have various beautiful rewards organised to thank people who make pledges, created by the talented illustrator Frances Ives, who will also be involved helping us to design the website and make it truly a thing of beauty when we reach our target.

A Better Place – Crowdfunder from A Better Place on Vimeo.

A Better Place will be a free resource for anyone and everyone to use, a cross between an online lifestyle magazine and a listings and product reviewing website. Our team is based in the UK and the USA, so we will do our best to cover services and products based globally, wherever possible suggesting similar products that are closer to home for people on both sides of the Atlantic.

Several websites and blogs already exist in this field, but nothing that we’ve come across so far covers all areas of life as comprehensively as we would like to, with in-depth articles and discussions of issues as well as extensive product listings and recommendations organised in a logical and aesthically-pleasing manner. The website will be quality-led; what I mean by that is that we will only feature products and services that we think can stand on their own merits as well-designed, useful, and desirable, and that also have a positive impact as a matter of course. We believe that this is the only way that ethical consumerism will ever become truly mainstream. If it’s all ‘fair trade-y’ funny smelling big jumpers and bobble hats, and ‘tribal’ jewellery, it will just remain an elaborate way of donating to charity. I guess you could say that we’re trying to take ‘trade not aid’ to the next level, searching out all the best innovative and positive impact brands and organisations around for you.

we are stardust, we are golden, and we've got to get ourselves back to the garden, Joni Mitchell Woodstock lyrics, inspirational quotes, A Better Place, ethical lifestyle

A Better Place will be a website where you can go to inspire a positive lifestyle, whatever your budget. Whatever you need, we will try and present you with attractive ethical versions that compete with the best on the market, so that spending your money well becomes a real pleasure, not a chore.

An English professor of mine once said that sometimes a phrase or an idea strikes you particularly hard and sticks with you for years, niggling away at you. He said that it is like the grit that gets into an oyster, eventually resulting in a pearl. It is an irritant that pushes you to think about a topic particularly deeply, research it, and eventually do something about it. As my oldest friends will tell you, this idea is something that I’ve been a bit obsessed with for over a decade since I was at school and I wrote to Ali Hewson (Bono’s wife and founder of the ethical fashion label, Edun) asking if I could do work experience with her. (She sent me back a very sweet and gracious letter saying that she thought I was a bit young, but thanking me for my interest and encouraging me to stay passionate about ethical trade.)

The name, ‘A Better Place’, was inspired by a conversation with my dad that I had when I was younger; we were on holiday and he was picking up pieces of litter from the sand as we walked along the beach, and I asked him why he was picking up things that he hadn’t dropped. He answered that we had to try and leave the world a better place than we found it. A simple lesson, perhaps, but one that had a big impact on me. The blackberries in the logo were his favourite fruit, and my sisters and I have many happy memories of foraging for the berries together every year. He used to get so gleeful and boyish whenever he saw them, and suddenly dart off into the bushes with a sparkle in his eye, returning with juicy handfuls of the berries.

rose, A Better Place mission statement, Crowdfunder, ethical lifestyle, Stratford Caldecott, environmentally aware, ethical consumerism, green living, fair trade, ethical shopping guide, ethical consumer, ethical products, ethical lifestyle magazine

I’d love to know what you think, and to answer any questions that you have about our project. If you are an ethical brand yourself, bear in mind that some of the rewards we’re offering for pledges involve various different advertising packages, so do check them out and get in touch at sophie@abetterplacejournal.com if you’d like to discuss these any further.

Thank you so much for your kind support and interest!

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