by Nick Payne
Carrie But –
Lorna I won’t have this life hacked away, chopped up, do you understand?
Carrie But there will come a time, do you understand, when you will be begging me, you will, you will be begging and wailing and crying, and pleading with me to save you. Because you will be able to sense it, when the body starts to fall apart –
Lorna No.
Carrie And what will I do then?
Lorna Exactly as you have been instructed.
Carrie What sort of a wife, partner, friend, would I be if I watched you curl up and suffer, knowing full well –
Lorna You have my permission to go.
Carrie What?
Lorna You’re right, when it gets that bad –
Carrie I don’t want –
Lorna You can leave.
Carrie Be reasonable, for Christ’s sake!
Lorna No. I’m dying, I’m allowed to be unreasonable every now and again.
Carrie What is that, is that supposed to be, what is that?
Lorna Look at me. Look at me.
Carrie does so.
This feels reasonable, feels logical, rational. I’m sick and someone we trust, someone who knows all about these things, is telling us they have a cure. Of, but, of sorts, but they don’t. They don’t. All they have is a solution to a problem we didn’t even think we had until they started talking it up. And I’m sorry. I’m sorry. I am so desperately sorry, Carrie. Because I wish I had met, we had met, I wish that we had met years ago. An age ago. It is unfair. It is so crushingly – And I feel a resentment, a great great resentment and an anger, an anger, in the pit of my, when I think about all the years I wasted not knowing you … And about all the years I won’t have to get to know you better … But – Look at me, look at me – Because I mean this – You will never –
Carrie I understand I understand … I’m sorry, thank you, but I can’t keep talking … like this, I’m sorry … I feel sick I feel sick we need to stop talking about it. I hear you. I hear you. I hear you.
Beat. The longest one yet, perhaps.
What will we do instead?
Lorna Cope.
ONE
Lorna, Carrie and Miriam.
Miriam The damage, the deterioration, is more advanced –
Lorna Further along?
Miriam Yes.
Lorna Further along than you thought?
Carrie And worse than you thought, too, or –
Miriam It is, yes.
Lorna How?
Miriam The disease doesn’t work chronologically, or even logically –
Lorna But the, the spread of it –
Miriam Yes –
Lorna The rate of the spread of it –
Miriam Yes, that’s correct, the speed with which –
Lorna Is worse?
Miriam Than we had anticipated, expected, let’s say, at this stage, that’s correct.
Carrie What can we do?
Miriam Would you like to sit down by the way?
Carrie No. Thank you. Me, you mean?
Miriam Both of you.
Carrie I’m too jittery to – You?
Lorna I’m fine.
Miriam Something to drink?
Lorna Please don’t prevaricate.
Miriam When we last spoke, we discussed the possibility of, the specific removal of a series of, very localised, particular networks of neurons, in order to stem the spread of the disease. But that, to speak plainly, is no longer an option. It would appear a slightly more elaborate procedure is now our only – A neural, for instance, a neural prosthesis of some description.
Lorna Prosthetic?
Miriam Yes.
Lorna You mean a synthetic bit of brain?
Miriam A silicon, yes, a silicon chip, to replace or heal any damaged or indeed absent brain tissue, absent neurons, pathways. Using the information from your simulation, we can, are able to, to programme – To cut a long story – A very specific mathematical formula is, can be, programmed into the prosthetic –
Lorna The chip?
Miriam Into the chip, yes, so that there is no loss of function as a result of any tissue we remove.
Lorna Anything you take you can put back in.
Miriam In terms of functionality, yes. But in terms of memories associated with particular pathways or any tissue we have to remove, no. That which we have to remove will be permanently lost to you. As if it were never there in the first place.
Lorna Jesus.
Miriam It’s the difference between not being able to remember where you left your house keys, and having your house burnt down.
This seems to sting both Lorna and Carrie a little more than Miriam had intended.
Lorna You mean there’ll be no going back, is what you mean, what she means.
Miriam Correct. This is an asymmetrical procedure.
Lorna To be absolutely clear.
Miriam Please.
Lorna The information you have to remove, however much that might end up being, there is no way you can, I don’t know, programme that into this, chip, this prosthetic?
Miriam No –
Lorna You can’t create a programme for that and return it –
Miriam The memory, no, the brain doesn’t – Despite various analogies to the contrary, the brain in no way – We’re not machines. Memory, memories, are not data. They aren’t stored or filed away. They’re non-linear, associative. Reliant on context, bound by time and space, millions of things happening all at once. I say to you coffee and you might say to me: brown. Bitter. But you might also say, a, a name, or a place.
Lorna You haven’t answered my question.
Miriam There were, there has been some research into the, yes, into the creation, into hippocampal prosthesis, a prosthetic hippocampus which is programmed to re-create very precise patterns of electrochemical activity associated with particular memories. But only, so far, in mice –
Lorna Mice?
Miriam Yes. And rats. Mice and rats and zebra fish. But, the results weren’t particularly … encouraging.
Lorna Meaning?
Miriam There was evidence of psychosis, of –
Lorna Psychosis?
Miriam Correct.
Lorna Mouse psychosis?
Miriam Unlikely as it sounds –
Lorna Tiny mice with tiny bouts of –
Miriam I know it must sound, a little, somewhat let’s say unreal, but –
Lorna Worse than unreal, it sounds ridiculous!
Carrie Lorna.
Lorna What? It’s embarrassing!
Carrie Enough.
Beat.
I’d like to go back. To the procedure we were discussing. For Lorna. The procedure you’re recommending. How many times have you carried out this particular procedure? The one you are recommending to us today, right now.
Miriam I’ve lost count.
Carrie It works, then, you believe, believe that it works?
Miriam The results speak for themselves, yes.
Carrie And what about the times when you’ve seen it not? Work, fail, go all to shit, on those occasions –
Miriam I have never seen this procedure fail. It is complex, and you know what, it can be arduous, let’s be clear about that, particularly during the, recovery. But it works. Time and time and time again. Phobias, obsessive compulsive disorder, post-traumatic stress, addiction – All treatable, all curable.
Carrie Wow.
Lorna But it’s a, where do you even begin …
Miriam It’s a lot, for sure.
Lorna What happens to me? What’s going to happen to, what’s going to bind me, this me, now, to me once I wake up, and you’ve …
Miriam We’re talking about a very small, a very specific, relatively small amount of –
Lorna How small exactly?
Miriam I’m sorry?
Lorna You said small … the … with …
But Lorna has ‘gone blank’. Beat.
Sorry, I …
Beat.
No, it’s gone, I’m sorry. I was … No I don’t, know what I was … I’m sorry.
Carrie You don’t need to apologise.
Lorna Still getting used to, going like that, losing my train of …
Beat.
Have you ever, any personal experience, with, in this particular, have you ever –
Miriam Meaning the procedure itself, or –
Lorna No, personally. This, all this, the mind running a mile.
Miriam My mother, actually, yes, she –
Lorna Your mother –
Miriam Yes, she –
Lorna What did you do?
Miriam Well. You know what – she died.
Lorna Why?
Miriam ‘Why’?
Carrie Lorna –
Lorna Why didn’t you intervene?
Miriam She, well, she had made it very clear to us that that was not what she wanted.
Lorna Really?
Miriam doesn’t respond.
How old was she?
Miriam I’d rather not … She was in her eighties, eighties, eighty-seven.
Lorna She said no?
Miriam She did.
Lorna And what did you do?
Miriam I bore witness to it.
Lorna I’m sorry.
Miriam Yes.
Carrie Is there anything else that we –
Lorna But what would you have done, if she, if she had agreed?
Miriam I’m sorry, I’m somewhat uncomfortable –
Lorna Please. If you don’t mind. I would like to know how –
Carrie Enough.
Lorna I’m sorry – I’m really not –
Miriam It’s okay, it’s okay. It’s a very big decision. And I understand the need for information. So here are the facts. My mother died unable to swallow. By and large unable to move. To speak. To call for help. To think. To comprehend her surroundings. To differentiate between time and place and past and present. Unable even to hold my gaze, to clasp my hand. Now you might say, well this is natural, so is life. This is ageing. And twenty, thirty years ago I might have agreed with you. Might. But not any more. Ageing is a disease, on this we can agree. It appears natural, so-called, but it need not be. At least when it comes to the mind. The body, yes, the body, it may decay. And it will most certainly die. But the mind, the brain, this three pounds of mass, we now have a way to augment. To treat, to cure, to preserve. To enhance. And before you – No, it isn’t about living for ever. It isn’t about – But what it is about, is a good death, so-called. Quality of life. And that is my job. There are some, yes, there are those who wish to free the mind from the body. To roam free. I don’t know, I don’t know about that. I want to help you, Lorna. It would be remiss of me not – I would not be doing my job … You know what, no, I don’t know what else I can say to you.
Beat.
Carrie If we wait?
Miriam I’m sorry?
Carrie To come to a decision, what are the consequences of waiting.
Miriam The disease is progressive. The longer, if you – It’s degenerative, it’s …
Lorna I can’t help but think I’m with your mother on this one. It’s abhorrent. Isn’t it, this, all this.
Carrie Or –
Lorna Isn’t it?
Carrie Or it’s a –
Lorna Isn’t it, all this, it’s –
Carrie Or it’s a, or it might be the opposite. It could be right. Because you’ll be better. And that is, you know, surely, that is – Yeah I mean as far as I’m concerned, that is, the single most important – And so yeah whatever it takes to, to get to that, to get to that point, whatever it …
Lorna is silent.
(To Miriam.) I think we ought to, think we’re going to need to, take some, before we –
Miriam Of course.
Carrie But thank you. It’s all very – The need, the need for expediency, I think it’s, I think we, don’t we? Clear, you’ve made it – And we will, won’t we, come to a … (To Lorna.) Won’t we? Together.
Living Through Change
‘I can only note that the past is beautiful because one never realises an emotion at the time. It expands later, and thus we don’t have complete emotions about the present, only about the past.’
Virginia Woolf
Loss of memory evokes a particular quality of fear, both for the person whose memory is fading and those close to them. Throughout her career, Deborah Bowman, Professor of Bioethics, Clinical Ethics and Medical Law, has worked with numerous individuals, families and clinicians navigating the painful and frightening prospect of dementia and memory loss. Here she shares her experience and how the law informs such highly emotive situations.
As human beings, we navigate denial of our mortality and dread of illness throughout our lives. Within families, we have our own pathographies which cause us to dread specific diseases and fates. Yet, diseases that affect our capacity and memory prompt a unique type of apprehension. For what are we without our memories? Perhaps more significantly, who are we when our memories are compromised, diminished or lost?
These are questions that many are facing. In 2015, there were estimated to be over 850,000 people living with dementia. The Alzheimer’s Society predicts that if current trends continue, over a million people in the UK will have dementia by 2025 and over two million by 2051. Globally, it is thought that over 36 million people are affected by dementia and, of those, approximately 28 million are undiagnosed.
Diseases that affect memory alter identities. The plural noun is important. For memories are embedded within our relationships, roles and communities. What we remember reflects who we are to other people. Our stories are informed by, and inform, the stories of others. We depend on each other as we develop our identities: as someone’s child, sibling, friend, lover, partner or colleague. And we, in turn, hold up the mirror of identity to those whose lives entwine with our own.
The effects of a loss of memory on identity can be devastating both for the one affected and for those who love and know that person. Often it is the small, but searing, reminders that someone has been altered by disease that are the most painful. Moments that represent much more. A woman who, on arriving at a care home, was heartbroken to see her Guardian newspaper reading friend randomly turning the pages of the Sun described the overwhelming sadness she felt at the sight. Children of a lifelong vegetarian who found their mother tucking in to sausages on a hospital ward grappled with whether they should ask staff to withhold meat in recognition of their mother’s long-held principles, or simply be grateful her food seemed to give her pleasure. The cumulative effect of these moment-by-moment changes remind us what is lost: a person’s identity and the landscape of our relationship are, we realise, irrevocably altered.
However, it is seductively appealing to misrepresent the coherence of memory and to suggest there is a clear boundary between those whose memories are compromised by illness and those who enjoy ‘healthy’ memories. For memory is a slippery and mysterious phenomenon. We appear in photographs that prove our presence at events we don’t recall. We filter, sift, enhance, disregard, deny and emphasise moments in our lives to create a narrative that we package and repackage according to context and time. We are floored by the rush of unanticipated recollection on hearing a piece of music or smelling something that reminds us of times and people about which we have not thought for years. We wake shaken from vivid dreams that cast us back during sleep into a muddled mosaic of people, periods and places often overlaid with chaotic surrealism. With friends and family, we negotiate and argue about our experiences: who was there, what were we wearing, was the weather really apocalyptic? We sort through the memories that each person offers to achieve a shared account. And, of course, the process of building the common story from the pieces of individual recollections is, itself, identity-forming and memory-creating.
Even if we had the capacity to remember our lives and experiences accurately and completely, would we wish to do
so anyway? The question of constancy and change is especially interesting in thinking about what we do and do not remember. Human beings change: physically, emotionally, politically and socially. Some of those changes are chosen and pursued, some are mediated by relationships, psychological development and social shifts, some come about by luck or ill-fortune. Nonetheless, change is a feature of our identities and our lives. Paradoxically, constancy, particularly in relationships, is often possible because we acknowledge and allow for change in ourselves and in others.
It is in this complex and shifting context that decisions about healthcare take place. Loss of memory does not necessarily mean loss of capacity. Capacity is a legal concept that depends on what someone can understand, retain and consider to make a choice. It is dynamic and is decision-specific. It depends on function, not diagnosis. Nonetheless, and sadly, many diseases do impair one’s capacity, thereby reducing or removing an individual’s autonomy. The challenge for clinicians is to work with families towards caring and practical solutions.
There are several ways in which we can plan for a diminution in, or loss of, capacity and the law presents a number of options. Some people make advance decisions: statements of preference or choice about a future event and time. Advance decisions are not without challenges. First, they are predicated on the notion that we can know our future selves and predict wishes in relation to symptoms we have not yet experienced. Secondly, advance decisions have to be sufficiently clear and precise as to apply to a specific set of circumstances – a requirement that depends on an honest and informed appraisal of the development of an illness.
Another option is for an individual anticipating the loss of capacity to nominate someone to act as a proxy and to make choices on his or her behalf: a lasting power of attorney. Usually, the power of attorney is held by someone who knows the individual well. The holder of a power of attorney must act in the patient’s best interests. It is a legal relationship, but it is often founded on love; and therein lies its power and its limitations. Love may create a strong advocate who will ensure that care reflects what an individual would have chosen. However, love may also mean that the person holding the power of attorney feels overwhelmed and conflicted by their responsibilities at an already painful time.