Walking whilst ill

Yesterday I went to Kew Gardens (it rained all day, I got very wet). I was prompted to visit the Chinese pagoda and the Chinese garden by a conversation on BBC 3’s ‘Free thinking’ podcast about plant hunting and the naming of plants. The curator explained that the plants in the garden now carried their names in Chinese and commented that the plants were not discovered by plant hunters as they were known to the Chinese for many centuries. This seemed an amusing and good point – that the plants were only noteworthy when categorised by the western coloniser. I could not find the garden – but the pagoda gave me some much needed shelter.

Kew reminds me of a zoo, with beds demonstrating the different varieties of plant species, as animals are grouped in cages, more scientific than artistic, but the gardeners there do demonstrate artistic skill too. It is a beautiful place.

One of my cousins was a plant hunter. He died suddenly a few years ago on one of his plant hunting adventures in Myanmar. He was relatively young, at 61, and appeared to have a lot of future ahead of him. But I could not imagine a better way to go, doing what he loved best.

Was he following in the tradition of the colonisers? Myanmar has been closed for many years and since the opening up of the country as it moved to its short lived democracy, it became possible to visit and travel more freely. My cousin was excited by the possibilities of being the first to discover new species like the hunters in earlier ages.

After sitting under the eaves of the pagoda, getting colder and colder, I decided to visit one of my favourite gardens, the Japanese landscape. This represents a country that successfully resisted colonisation and developed its own traditions in horticulture, and many other art forms. The Lion’s Gate is such an assertive statement of identity (and beautiful too).

I sometimes wonder if countries, such as Myanmar, Nigeria, China and India, might have developed an artistic culture, stranger to the West, if we had been refused entry as the Japanese leaders did. I feel some sadness as to the different futures that were lost to the colonising influence of Western Europe.

But the gardens are still beautiful and they lift my soul – for that I am very thankful. They are a demonstration of the gardeners’ art, as much a demonstration of science – although a concern for science seems uppermost on their promotional materials. The Japanese landscape takes beauty very seriously and the landscape shows us their formal concerns about colour, texture, volume and materials, not just plants. It has much to teach us.

Have you noticed the discourse about waste, recently?

Yesterday, I read an article in the London Review of Books about morality. The author, Thomas Nagel, discussed 2 types: consequentialism (concerned with good/bad outcomes of our actions – utilitarianism is a popular version – and proponents take a rationalist perspective that we can always work out the moral benefits of our actions to make better decisions for the good of most); and deontologism (concerned with emotional intuitions as to right and wrong actions, taking as a fundamental starting point the invoilability of the individual which would proscribe murder and torture, and protects our property rights as individuals and values the keeping of promises and other contracts; and maintains a sense of humanity’s collectiveness).

Last week, I watched a programme on Channel 4 about cooking and waste (‘Cook Clever, Waste Less’) and I am a fan of the BBC’s ‘Eat well for Less’ most particularly because it provides some strategies for shopping – more than half the problem of food waste. I waste a lot of food and it bothers me. At the moment, my appetite is much reduced and my portion sizes have shrunk, but I still put too much on my plate and end up by scrapping half into the bin. I hunt around for the perfect condiment to perk up my taste buds, struggling to recover from medications – so I have lots of little bottles that I have tried once and now don’t know what to do with them.

The programmes present waste as a moral issue. They follow the obvious consequentialist argument, that waste costs us money, and creeping into this argument is the costs to the planet of wasted food which produces methane and pollutes through the use of plastic packaging.

The deontologist argument to waste might be summed up by the parental strictures to ‘think of the starving in Africa’ when I was a child and had rejected the food in front of me. Given that I had little control over what was provided for me, such admonishments always seemed a bit unfair. But famines have not gone away and research points to the over-consumption in rich countries as a contributing factor.

Other programmes, such as the Great British Sewing Bee, have also championed the notion of wasting less by re-purposing old clothes and garments discarded by us and sent to the charity shops. I quite like making things but find recipe books often encourage the buying of ingredients that I only use once – celery being a classic example – or equipment and materials to make craft objects, attractively photographed in paperback project books. I find I do not have the time or energy to make all this stuff although the dream is ever present.

I have started to restrict my recipes to templates, and I have created some inexecrable dishes, but my mantra has become ‘use it up’. I have taken up mending and rather startlingly my mother mentioned that she was going to mend some clothes – I can’t remember the last time I have seen her do that – she loves the Sewing Bee as I do. I have a strict rule that I cannot go on courses until I have established a practice in my chosen area. So no more painting courses until I start painting every day. This has saved me money – partially fulfilling utilitarian morality concerning waste but probably not doing much for the starving children in Africa.

Last Friday, I walked from Pluckley station to Rooting and then turned back. Learning from my previous experience, I chose a much gentler walk from my book of walks. There was no-one around except a farmer in his tractor. There were some very fine trees on the edges of large fields of mono-crops of broad beans and wheat. The silence was deafening. It was a bit dull walking back the way I came. Unlike Seaford, there were no handy benches to rest – not even at the station – and no ice cream vans for my revival. So a proper country walk.

I was glad to climb onto the train home as I was fairly tired. I struggled to leave home and almost didn’t. The walk description mentioned stiles which made me nervous – I have fallen over stiles quite a few times and I was fearful that I would be injured and unable to get help. My lack of trust in my body caused delays at the outset whilst I calmed myself down. Armed with a map, a phone and some numbers of taxi companies, I eventually made it out the door. Fortunately, the stiles had been replaced by gates. I turned back before reaching a stile, described as decrepit, in the book.

The benefit came next day. I felt happy.

Recently, I discovered that our family owned slaves in Barbados. I watched an interesting BBC programme, presented by David Olosoga, where he described a UCL project to list in a database all those British people who had been compensated by the government after the abolition of slavery. I think his point was that much British wealth and the empire is based on the African holocaust and we are as implicated in slavery as our American cousins but are in greater denial. You can put your surname into the database and it will tell you if your family was compensated and by how much.

I joked with my brother about this and said I thought our involvement was unlikely but he thought we had been involved since there were some West Indian cricketeers who shared our name. He thought it was an odd surname for a West Indian until he worked it out. I was mortified to find out he was right after I had submitted our name to the database – our family owned quite a few slaves.

I wondered where the money had gone – since we are not a particularly wealthy family – how had I benefitted and how to make amends.

At first, I wanted to deny that I was a direct descendent – but that excuse will not do – how direct do you have to be for it to matter? I defended myself because I have not directly enslaved anyone, but I thought I had benefited from the enslavement of others, (and perhaps I still do in my consumption of cheap goods). I and my immediate ancestors have had the privilege of a private education (this was where some of the money went) which has enabled access to better jobs and higher incomes than the descendants of slaves.

How to make amends? I am reading ‘Blood Legacy’ by Alex Renton, a journalist grappling with just such a dilemma. My second thought was to research my family to find out how direct a beneficiary I was and, in the course of this, work out how to make amends. Alex Renton, using his extensive family archives, has done precisely this. I don’t have any archives to rely upon and I haven’t reached the end of the book where he makes some decisions as to what to do. So I am hoping that he will do the work for me.

As an evidence reviewer, I suspect that my work commits epistemic injustice in that it privileges the information needs of doctors and other professional classes, bringing together information that is narrowly scientifically valid. Thus it reinforces the divide between the lived experience of illness and misfortune, and the scientific codes that make up acceptable evidence.

I was recently at a meeting that was discussing a review of evidence into informal social support for domestic abuse survivors. There was a mixture of participants: service providers, policy influencers, researchers and domestic abuse survivors. Participants were keen to develop an understanding of the effectiveness of informal interventions in this field by examining the available evidence.

However, the stories told by the survivors would never make it into a formal academic journal study – too anecdotal to be considered objective and therefore ‘truthful’. But these stories of kindness were what these women cared about. The kindnesses of others were important to them. The term ‘Informal social support’ seems to suggest that these kindnesses would be more important to examine than outcomes and demographics – is this review an attempt to formalise kindness?

The survivors set great store by reports and evaluations that hadn’t made it into an academic journal. But these are often written to please funders and lobby policy makers, so are always biased as they are working to persuade. But scientific journal articles are doing the same thing, interesting authors are making an argument for their conclusions. The problem with reviews is that they claim to be unbiased and this is misleading, therefore an injustice.

Evaluations and lobbying reports usually do not discuss the failure of interventions – an important source of knowledge – whilst occasionally research articles will which makes them particularly valuable. For example, I was looking through some research articles on this topic and one suggested that ‘shame’ prevented survivors from seeking out support, informal or otherwise.

How to bring together the idiosyncracies of personal experience and the more formal research literature? I find both useful. Orthodox reviewing does not do it because in order to appear unbiased it takes out the contextual information and makes everything seem the same. Reviews appear to me to be very flat, neutral and thus fairly uninformative. Novels may say more – think about the commentary on women, marriage, poverty and social hierarchy in Austen’s novels. Reviews are written as if in a vacuum, that society and personal relationships do not exist.

Carel claims that phenomenology has the answer in its detailed approach to considering the individual’s experience of illness with the aim of identifying underlying common realities. Much in the same way, a critical realist would approach the problem. These strategies may help in understanding experience to alter communication between those groups with professional concerns and informal supporters, anxious to help but unsure how.

It occurs to me that the domestic abuse survivors and those with chronic illness have some things in common – loss and shame come to mind.

This is a question that the celebrated sci-fi writer, Ursula Le Guin, explored in her book, ‘The Lefthand side of Darkness’. In it, she conceived of a race of a humanoid people who had evolved to the extent that men could get pregnant and bear children. For a few days a month, members of this race would come into heat, just like mammals, and be available for mating with the sex role being arbitrary, so a man could take on female biology and become pregnant. It is an intriguing idea.

What does this fantasy do to our conceptions of gender? At present, we seem to be questioning gender roles, particularly those in the trans movement. I must admit I find the drag scene repellent. This seems to me to be a group of men, channelling their inner panto dame, pretending that womanhood consists of big hair, sparkly dresses, high heels and lots of makeup. I do not recognise this as representing my gendered experience and regard it as an insulting parody, much as black people regard the Black and White Minstrel Show. I suspect sometimes that this may be an example of misogeny. Much of the discussion about becoming a woman seems to centre on biological and hormonal changes and operations to develop breasts. But little discussion of pregnancy and childrearing.

I don’t see trans men (they may be there) walking beside their sisters on marches protesting against violence, sexual harassment and the gender pay gap. These are probably more central issues for most women than which sparkly dress to wear. We know that women often experience violence in pregnancy and, of course, taking time out to rear children means that we suffer lower wages when we go back to work, as well as carrying the major burden of childrearing, often taking part-time jobs to manage all these responsibilities.

So pregnant men? What are the chances? How many men would go for it if such an operation ever became possible? Le Guin suggested that this biological change would eradicate violence towards women and create greater equality because the sexes would no longer be differentiated in this important respect. Both sexes would be equally vulnerable or powerful, depending on your perspective.

Havi Carel’s book suggests that healthy people take their bodies for granted and in our failure to notice our bodies, it becomes transparent until illness forces us to confront our vulnerable physical selves. The discussion about gender calls into question what part gender plays in our bodily understanding. Is this questioning a form of illness as some psychiatrists claim – naming it ‘body dysmorphia’ ? Or is it a radical challenge to the gendered social hierarchy? Are those who do not choose the medical route but lay claim to gender fluidity, the real revolutionaries? Or is gender too bound up in our physical capabilities to exist solely in social expectations and possibilities? Accounts of transitioning seem to focus on medical solutions where individuals transition to what exactly?

Havi Carel’s book, ‘the Phenomenology of Illness’ discusses dying as part of our lives. To live an authentic life, we must from time to time confront our own death, our finitude. Illness is often a moment of pause where we come nearer to death and most of us will be ill before we die.

To hold our death as a constant concern is too much and creates debilitating anxiety. Mostly we live inauthentically, fleeing from the horror of our own demise, but able to act, forgetting that we are racing to our end, unable to say when that will be. But at some point, we must face resolutely our end – paradoxically this may make the present more vivid and we may live richer lives, appreciating the time we have left with all the uncertainty as to date and time of our demise. Life and death are intimately linked.

I had a recent experience whilst meditating or praying, where I realised that I hoped that God/Jesus Christ would wave a magic wand and cure me of my illness, if I prayed hard enough. Rationally, I knew this was ridiculous. I came to understand that the emptying of my mind was preparing me for death. It was a reassuring thought, strangely, because I no longer had the sense of failure that I was not cured or the disappointment of not being loved enough by God.

I came across this term whilst listening to the BBC 3 podcast ‘Free Thinking’ . This episode introduced me to the work of Havi Carel and the philosophy of illness which I blogged about recently.

Epistemic injustice occurs when one person’s account or claims to knowledge is ignored or de-legitimised in favour of accounts from more powerful groups. A common experience for female patients complaining of pain which doctors, usually but not always men, cannot explain and the women are often told their troubles are in the mind. Or in my case, my condition was described to me as ‘multi-factorial’ which I took to mean the same thing.

Last year, I was talking to a palliative care consultant and he asked me if I was anxious and I replied that I was more depressed than anxious. He corrected me by saying I was not depressed because I had told him that I was working on a PhD and he explained that I would not have the motivation to do this if I was clinically depressed, as it was an illness that drains the sufferer of all motivation. So I was coming to terms with my transition into chronic illness which was making me sad.

Does it matter if we carelessly describe ourselves as being depressed; or point to tidy drawers and laugh at our supposed OCD; or describe an attack of anxiety as PTSD? Carel claims our habit of exaggeration trivializes these serious illnesses and makes it harder for sufferers to get the treatment they need and therefore they suffer an injustice.

Yesterday I went for a walk from Seaford to Cuckmere Haven (I didn’t reach the haven). I have been suffering from the after effects of brain tumour treatment for a couple of years now and have become physically quite weak. I love walking in the countryside and decided quite recently to take this up again to improve my physical strength and my mental state.

At the same time, I have started to read ‘the Phenomenology of Illness’ by Havi Carel. She explains the difference between illness (the lived experience of chronic ill health for the individual) and disease (consisting of objective biomarkers, the scientific concern of doctors and physicians who don’t experience our illnesses but attempt to cure us or, at least, improve our quality of life). Illness is characterised by loss: of control; of the ability to carry out plans; of feelings of wholeness; and independence. All of these losses I have experienced as well as much frustration that I have not returned to my former healthy self as I expected.

The book informed my walk. I realised as I struggled up what seemed like a mountain that I had relied on my memories of former walking abilities and had looked for a walk in terms of miles rather than degree of difficulty. I resolved to do gentler walks and just turn back if I was tired. I lost my ability to carry out my intention to walk to the haven.

As I came back down the hill, I worried that I would fall. I had some trail sticks with me, (to my shame, I had rather derided people with these aides in the past, but I could not have done this walk without them), and as I walked back my legs started shaking, I cried out once or twice. I wondered if I could ask for help – and so lose my independence.

As I sat on a bench in Seaford, looking at the sea and eating an enormous ice-cream, I felt triumphant. I had walked perhaps a couple of miles, whereas, when I was younger, I could do 11-12 miles a day. But this walk was more important – I had felt uncertain and had worried about doing it before I left – would I be strong enough? As it turned out I wasn’t, but I enjoyed being by the sea and on the cliff.

As to the book, I like it. I recommend it – even if you are not ill, you may be one day. It may help you deal with doctors and communicate better across the knowledge divide of disease and illness.

This is the phrase that clinicians use for those patients stuck on a ventilator in an ICU who are without hope of recovery but pressures from families and other doctors allegedly prevent them from turning off the machine.

The familiar story of an individual beating the odds to recover had its latest outing in the BBC drama, ‘Keeping Faith’ where a young man with an inoperable brain tumour demanded treatment, got it, and was seen skipping onto the beach in the final frame. A far more realistic and heart braking account was a documentary about Great Ormond Street of a young girl with an inoperable brain tumour filmed making her way to her radiological treatment and shown to be successively more and more disabled as the radiation destroyed her tumour and her brain. How brave she was!

Although doctors can sometimes portray themselves as hopeless in the face of the inconsolable grief of families, they are, by far, the more powerful party in terms of knowledge and resources. However, families often want their relative to die peacefully and to end their suffering. From COVID survivors, we now know that time on a ventilator can result in PTSD.

The call goes out from the families to the palliative care service, the cinderella service in hospitals, perhaps disliked by some doctors as an admission of their failure to cure. Clinicians can see death as a failure, whilst, for all of us and the clinicians themselves, it is just a natural end.

But how do we develop new treatments and machines without experimenting on these marginal cases? The ICU bed has become the cutting edge of care delivery in hospitals and these expensive beds are becoming more and more widespread.