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Archive for the ‘from the consulting room’ Category

I came across a Royal College of General Practitioners document recently – “Fit for the Future” – It is a vision of General Practice in the UK for 2030. There is a lot in it that I’d support but one of the statements is this –

An overhaul of the GP-patient record into a personalised ‘data dashboard’, accessible by healthcare professionals across the NHS, and that will draw on data from the patient’s genomic profile and wearable monitoring devices.
Now, maybe you read this and it excites you, but it made me stop and think “Hang on a minute! A ‘data dashboard’?”
I remember a line from the English philosopher, Mary Midgely, in her book, ‘Wisdom, Information and Wonder’.
One cannot claim to know somebody merely because one has collected a pile of printed information about them.
She wrote that back in 1989, and it’s clear that, since then, we have, to some extent, replaced the piles of printed information with hard drives full of data. But the point remains the same – you won’t know somebody just by looking at data.
One of my roles when I worked at the ‘NHS Centre for Integrative Care’ in Glasgow was to train young doctors in holistic practice. They’d be allowed to spend as long a consultation as they wanted with a patient then they would come to “present the case” to me. In other words, they’d consult their notes (often several A4 pages of notes) and tell me what they’d learned about the patient. At times what they actually communicated to me were detailed descriptions of the patient’s symptoms. Sometimes so many symptoms in such detail that the amount of information was quite overwhelming. By the time they’d finished I would find myself saying “Well, you’ve told me a lot but I don’t know who this person is'” I had no picture of the patient, their life, how illness came into it, how they’d coped, or the effects the illness had had on them, their family and their friends. A holistic case history is not a “pile of printed information”.
Data, or information, as Midgley pointed out, makes “much better sense when [it has] a context”. The context is revealed by the story. I don’t see how you fully understand a person without hearing their story.
Yet, one junior doctor told me she was being taught elsewhere “Never believe patients. They lie all the time. You can only believe the data” (meaning the results of investigations). That appalled me. What kind of Medicine can we practise if we think “patients lie all the time”? What kind of Medicine can we practise if we distrust their personal, unique stories, but trust only in “data”?
Now, I’m not saying that data isn’t useful. It can be. It would be daft to ignore that. But putting data up front and centre to the point where it replaces the relationship and the story? That’s my fear. That someone will think, “all we need is good algorithms and they will deliver all the right answers once we feed the data in.”
I’m sceptical. It doesn’t seem rational to me. It doesn’t seem realistic to me. And it risks shoving aside human values and the crucial importance of relationships.
Then, just yesterday the UK Health Secretary, Matt Hancock, put forward an aspiration for every newborn child in the UK to have their genome sequenced.  Interestingly, a poll of doctors revealed – “>2000 responses. Only around 10% of doctors would find genetic data more useful than postcode in planning the care for a newborn baby.”
I think we have to claim the ground for the importance of the unique human story. If, as doctors, we fail to consider the environments and circumstances of an individual life, we will fail our patients.
Data without contexts has some use, but it is not a full understanding of, or even a “knowledge of”, a patient.

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I came across a discussion about identity recently, and as identity politics and populism seems to be to the fore in many countries these days, it got me thinking – who am I, really?

A few years ago I was in Marseille and these incredible sculptures were installed around the “Vieux Port”. They really grabbed my attention. Here’s just one of them (see the photo at the start of this post) showing what I immediately perceived as a person. He’s not all there, of course, but we fill in the gaps to make him whole, don’t we? Well, it struck me that that’s what we do all the time.

At least once a week in my consulting room a patient on their first visit, after telling me their story over the course of an hour, would say “I’ve never told anyone what I’ve just told you. Never.” And they’d often add “I feel you know me so well”. It was good feedback, and it reassured me I was on the right track and had established a good therapeutic relationship. But I often thought, “Actually, I only met you an hour ago, and I think it takes a lifetime to get to know someone. I think we can spend most of our lives with a partner but we never really completely know them. I’m still getting to know myself, for heaven’s sake, and I suspect I’ll be doing that for the rest of my life”. Sometimes, I’d say that out loud, but other times, I’d just think it. I think it still.

Here’s me at Primary school –

And here’s me about sixty years later –

Is this the same person?

From my perspective it certainly is! I have the experience of a continuity of Self. I know these are both photos of me, but, boy, have I changed!?

So, who am I, really?

Am I this body?

It’s pretty obvious, even from just those two photos, that this body has changed a lot over the decades. Our bodies are made up of over 30 trillion cells (a number too big for us to imagine, and that’s just an estimate because nobody has been able to count them). Almost all of these cells live much shorter lives than I have done. Some cells live only a few days, other weeks or months, and only a minority last a full lifetime. So, it’s pretty certain that only a minority of the cells in this body I have now are the same ones I had in that earlier photo.

Interesting choice of verb there…..”had” – do I have a body? If so, who is this “I” who has this body? I’m tempted to say, no, I don’t “have” this body, I “am” this body. But there’s the trap, huh? Because if the body is always changing, am “I” always changing too? Where does my sense of continuity of being come from? And I am more than my body aren’t I?

What more am I?

Scientists have discovered and put forward at least three other elements of identity by studying genetics, the “the human microbiome” and epigenetics.

For a while the “Selfish gene” idea gained a lot of traction. “The Human Genome Project” was completed in 2013 and there were great claims for it at the time – a bright new future of “personalised medicine” based on your gene sequences was heralded. Some claimed it would lead to the elimination of a host of diseases. Richard Dawkins, whose book entitled “The Selfish Gene”, popularised the idea that our essence, our core, the “real” “I” wasn’t the body, it wasn’t the mind, it was the double helix spirals of gene sequences….our DNA.

Things haven’t turned out the way the great gene believers imagined however. It seems we can’t be reduced to the level of chains of little molecules. We are more than that. What more?

Well, next up was an exploration of the cells which are part of us but aren’t us – all the bacteria, viruses and other micro-organisms which live on and in our bodies but don’t have the same DNA as we do. It turns out there are at least as many of them as there are “our own” cells. “The Human Microbiome Project” was launched four years after the end of “The Human Genome Project” and by 2016 a lot had been discovered, but it’s still not enough to pin down who we are.

Have these projects helped me to answer the question “Who am I, really?” Not really, but it does make me deeply aware of the fact that I’m not so much an object as some scientific models have suggested. I’m certainly not a fixed entity. Instead, it seems I’m a constant, lively, energetic flow of cells.

It makes me think I’m more like a river than a stone! I’m certainly not like a machine.

But wait, it gets more complicated yet – following on from the discovery of the “genetic codes” researchers discovered that not all the genes are active all the time. In fact they switch on or off all the time. They’re more like music than they are computer code. What presses the keys to play the tunes? What determines which genes are expressed, and when? It seems a whole host of “environmental factors” are involved. You aren’t determined by your genes. They only represent some kind of potential. Whether they become active or not depends on the life your live – the environment you live in and the events and experiences of your life.

We don’t know what all the factors are, or how they work….. “The Human Epigenetic Project” anyone? Well, what do you know? There IS “The Human Epigenome Project“! A consortium exploring at least one of the links between genes and the environment.

So, if my body isn’t all there is to me, if my genes aren’t all there is to me, if my microbiome isn’t all there is to me, then what else is there?

My thoughts? My feelings? My memories, dreams and imaginings? The stories of my life?

Tick “all of the above”. (There are volumes of books which have been, and are still to be, written on each of these)

But there’s a vivid red thread running through all these observations – connections.

Who I am, really, will never be answered by considering myself in isolation. It seems I am a flow. Constantly changing, constantly receiving materials, cells, energies and information from the world in which I exist, constantly sending out materials, cells, energies and information, and constantly changing myself and the world in the process.

My story is not just my story. It’s our story. You and me. Every relationship, every encounter, every exchange, shapes, changes and moulds me, and, you, and the planet we live on.

That excites me.

It’s a new story. It’s the story of evolution, of emergence, of connections, contexts and change.

The answer to “Who am I, really?” won’t be found by looking at smaller and smaller parts. It’ll be found in experiences, in performances, in events, in relationships and interactions. It’ll be found in the unique stories that only I, and only you, can tell. It’ll be found in what we share and how we relate.

Identity is fluid, relative and dynamic.

Maybe we should think of it more as what we share, than what divides us.

 

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One of the things I love about living here in Cognac is the availability of different, fresh, locally produced food. I popped into one of the market-style shops here this week and discovered it was “Fete du Pommes” week – a celebration of apples. Because, of course it’s autumn now here and apples are available in abundance. I know I can go into one of the big name supermarkets and select a plastic bag of shiny “perfect” same-size, same-shape apples of a big name variety (“Pink Lady” anyone?) which have been shipped here all the way from the Southern Hemisphere but look what I can get when I go local instead?

I selected four different varieties, none of which I’ve heard of before, and placed them in the cardboard box from the stack at the entrance. Even within each of the many varieties available I could choose big apples, small apples, round apples, wonky apples! What a delight!

Diversity is a core feature of Nature.

There are no two of us the same. The Universe celebrates diversity by bringing to life millions and millions of unique plants, creatures and forms.

Nature abhors mono-cultures. They die out, taking the richness of the soil with them.

I delight in the diversity of human beings. During my four decades of work as a clinical doctor I looked forward to the start of each week when the next patient in the door would tell me an utterly unique story, one I’d never heard in my life before.

I wonder if it’s possible to respect uniqueness and diversity if Clinical Practice is determined by guidelines and protocols for patients who are even more diverse than the locally grown apples in the market.

There’s a beauty in diversity, as you can see from my photo, but it’s a fundamental tenet of reality too….

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Here’s a small basket of the tomatoes we picked from our garden this morning.

What strikes you about these tomatoes?

Well, what strikes me is their diversity.

They are a huge range of sizes, colours and shapes, partly because they come from different plants chosen because they are different varieties.

I SO prefer this to a packet of same-size, same-colour, same-variety tomatoes we can buy in one of the local supermarkets. Even just to look at….but also to taste! Here’s a simple plate from yesterday.

Only tomatoes, a drizzle of olive oil, a touch of salt and pepper. That’s it! Mmmmm….

I could leave this post right here. It’s enough, isn’t it, to celebrate colour, taste, freshness, locally sourced food, and the simple pleasures which make a day delightful.

But I’m not going to.

Because what strikes me about both of these images is the issue of diversity. We live in mass society – mass production, mass consumption, mass conformity. This last element is necessary to ensure the efficient workings of the first two. Without mass conformity, mass production and mass consumption go belly up. (yes, I choose my words carefully – he! he!)

There are enormous pressures to consume in this society, and equally enormous ones to produce. A lot of value is attached to both. Did you ever come across an old black and white comedy, “The Man in the White Suit”, about an inventor who creates a totally indestructible fabric? The lead character is a scientist whose discovery industry immediately tries to suppress, because it would mean people could have clothes which would last a lifetime…..and sales of clothes would plummet!

I remembered this old film the other day when I took my car to the garage to have worn-out shock absorbers replaced (ouch!). The mechanic told me that shock absorbers used to last 100,000 km but now they last only about 80,000 km. Guess that’s progress!

Jacques Ellul, who lived, researched, taught and wrote in Bordeaux, produced an astonishing analysis of mass society in his lifetime. I’ve just finished reading two of his main works (in English) – “The Technological Society” and “Propaganda“. Although both were published in the 1960s, they are extremely pertinent in 2019. He shows how a focus on “technique” – by which he means setting goals, then creating measurable processes to achieve them – brings a whole host of improvements and progress to human life, but, inevitably, is accompanied by widespread and deep de-humanisation. Plans, judgements, decisions, resources, all become grist to the mill of mass production and mass consumption. Mass society needs conformity, controls, rules, regulations, norms and standards. There is no room for “variance”, “diversity” or “uniqueness”.

He also showed how mass conformity is produced through targeted propaganda, focused on the “individual”. Now, doesn’t that seem a paradox? Don’t we tend to think of “mass” at one end of a spectrum and “the individual” at the other? Well, it turns out that apparent paradox is the key to mass control.

Long after Ellul published these works, the world saw the birth of a new politics, represented clearly by Ronald Reagan in the US and Margaret Thatcher in the UK. It was Thatcher who famously said “there is no such thing as society”. The new politics became known as “neoliberalism”. With the spread of neoliberalism society became increasingly atomised. The idea was that everyone was on their own and in competition with everyone else, and through “the market”, and a form of “social Darwinism”, the weak, the inefficient, the failures, would die off, and the strongest, “best”, people and methods would win the day.

It’s a toxic mix. Mass plus individualism.

But, hey, I hear you say, I AM an individual! I am NOT the same as everyone else! I’m not just a robot, a machine, a cog in a greater machine!

I hear you.

But here’s my take on that – individualism divides us. It sets us against each other and ignores what we share and what we have in common. It feeds the divisions, prejudices, hatred and fear of “the other” which have become all too common. But I don’t want to be just a data point in Cambridge Analytica’s memory banks. I don’t want to be a mere pawn of Facebook, Twitter, Youtube, Instagram….my details harvested to target me with highly crafted propaganda to make me conform, or to support a small group who have, and want to hold onto, riches and power.

How do I resolve that paradox? I sure don’t have it all figured out but I have some thoughts…..

I don’t think we need to subscribe to either of these extremes – a data point in the mass, or an individual ego, disconnected from the rest of the planet. I think there is a third option.

Uniqueness.

Isn’t that the same thing as individuality? No, I don’t think so. For a whole host of reasons, but, for starters, because “individualism” prioritises separateness and difference. It’s a form of what the English philosopher, Mary Midgely called “social atomism” – see her “The Solitary Self” and “Science and Poetry” for her analysis of this problem. Uniqueness, on the other hand, demands an examination of contexts, of circumstances, connections and environments.

To fully experience and understand the uniqueness of this moment, it helps to see it as a dynamic, changing-before-your-eyes, event. I am unique because of the myriad of connections and flows which make me who I am. I have emerged from a particular family with it’s family tree, in a specific place, at a specific time, and continue to grow and develop through a unique and personal chain of experiences which I weave into a story I call “being me” (or better “becoming me”!)

Every single day at work as a doctor I’d meet patients who came to tell me their own, unique, and personal, story. It’s how I got to understand them. It’s how I made diagnoses, offered treatments, therapies and practices to help them re-experience health again. No two patients ever told me the same story. Not in a lifetime of practice.

And here’s the key – the way I revealed their uniqueness (to myself, and often, to themselves too), was by uncovering the connections, the flows, the contexts, environments and events of their lives.

I never wanted them all to be the same. I never wanted them all to become the same. In health, as well as in sickness, every person turns out to be unique.

OK, this is a personal bee in my bonnet, but I have a hunch that if we tipped the scales a bit, away from a focus on the mass, away from a focus on the individual, and towards uniqueness, that we might begin to create a better world. Maybe it would draw us away from competition and division towards cooperation and connection.

Does this make sense to you?

I mean, it’s a bit of a leap from a basketful of tomatoes!

But before I go, here’s one of my favourite Mary Oliver poems, The Summer Day, which doesn’t use the word “uniqueness” but it seems to me to be all about it…

The Summer Day

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

—Mary Oliver

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In a recent article about advances in microscopy, a truly incredible innovation, the ability to look inside living cells will give us (according to the journalist who wrote the article)

Seeing the shape and structure of biological molecules is important because they are the cogs and wheels that make living things work. They work inside and between cells, which are the building blocks of human life.

“cogs and wheels”, huh?

See that photo at the start of this post? That’s a photo of cogs and wheels. You don’t see these inside cells. Living creatures are not “built” from “building blocks” – walls and machines are.

Here’s a machine.

Would you ever be fooled into thinking this was a living creature?

I don’t think so.

In fact, in the footage from this imaging technology that I’ve seen so far, the most amazing and striking thing is that everything you see is on the move. The inside of a cell is full of bustling activity and movement. Not cogs. Not wheels. More like even smaller creatures inside the living creature we call the cell. They seem more like what we see outside of the cell – in whole organisms, like in our own bodies – teeming communities of tiny creatures which we call cells, co-operating and collaborating to function as a whole.

The biologist, Lynn Margulis, developed the theory of endosymbiosis, which described how bacterial sized organisms may have evolved together to become the highly specialised structures inside each, and every, living cell.

In 1966, as a young faculty member at Boston University, Margulis wrote a theoretical paper titled “On the Origin of Mitosing Cells”. The paper, however, was “rejected by about fifteen scientific journals,” she recalled. It was finally accepted by Journal of Theoretical Biology and is considered today a landmark in modern endosymbiotic theory. Weathering constant criticism of her ideas for decades, Margulis was famous for her tenacity in pushing her theory forward, despite the opposition she faced at the time. The descent of mitochondria from bacteria and of chloroplasts from cyanobacteria was experimentally demonstrated in 1978 by Robert Schwartz and Margaret Dayhoff. This formed the first experimental evidence for her theory. The endosymbiosis theory of organogenesis became widely accepted in the early 1980s, after the genetic material of mitochondria and chloroplasts had been found to be significantly different from that of the symbiont’s nuclear DNA.  [wikipedia]

We are not machines. Machines are not alive, and they don’t evolve. Crucially, machines don’t show “emergent properties“. They are predictable because they are not alive, and they don’t develop new, impossible to predict, behaviours and characteristics.

I think we do Life a huge disservice when we think of creatures as machines.

We are actually infinitely more complex, more amazing, more puzzling, more wonderful than anything that tired old metaphor can come up with.

So, can we move on please? And talk about Life without reducing it to something inferior – a machine.

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“one swallow doesn’t make a summer”

Yeah, I know, but, first of all I was trying to get a photo of about a dozen hyper swallows zipping and zooming this way and that above my head, but, hey, I only got one! And only just!

The fact I only got one (in the middle of a summer’s day, by the way) reminded me of that old adage about how spotting one swallow doesn’t mean that summer has arrived. Which brings me to the subject of anecdotes….

Since the rise of “Evidence Based Medicine” I’ve heard it said many times that anecdotes are not evidence, and that a whole bunch of anecdotes isn’t evidence either. Only rigorous, controlled trials, statistically analysed provide evidence. But my problem is that I spent my working life meeting, listening to, conversing with, and treating, one patient at a time. Each patient came and told me a unique story. Not a single patient told me an identical story to one I’d heard before. I tailored my treatments for each patient according to their unique story and the way things progressed from there was unique, and also unknowable.

I had no way of knowing whether or not an “evidence based” treatment would deliver the promised results in this particular patient. On the grounds of probabilities and experience, of course, I could go forward in good faith and with some confidence, but I learned that I always had to be prepared to be surprised when the patient returned. It seemed that no two patients experienced exactly identical effects of the same treatments. Didn’t matter whether I’d prescribed painkillers, antidepressants, anti-inflammatories, antibiotics (seeing a pattern here?) or whatever, the future course of an individual life was, and always will be, unique.

Unique and emergent.

Emergent – that means the future unfolds as it happens in ways which could not be wholly predicted from the knowledge of the past and the present. All living organisms display emergent properties. It’s a characteristic of all “complex adaptive systems”. 

So, whilst I could never generalise from an individual “anecdotal” experience to apply it to every other patient, the truth is, generalisations can’t be applied to every single patient either.

The tendency to dismiss individual stories as irrelevant to medical practice has always struck me as illogical. Irrational even. It might make sense in a research environment, but the individual story remains crucially important in the clinical one.

In deciding on a particular course of treatment with a patient I’d want to take into consideration what I’d learned was good practice, and what the research evidence had shown about the various different options, but, on the day, in the room, with this unique individual sitting with me, and, maybe even more importantly, when they’d return to report what had happened, THE most important thing was them – their story, their experience, their life.

I didn’t know any other way to practice – it was one patient at a time. Ultimately, the patient was always more important than any data – despite the fact a junior doctor told me, not that many years ago, that she’d been taught “Never listen to patients. They lie all the time. The only thing you can believe is the data”

Nope. That’s no way to practice Medicine!

Oh, before I finish, thinking of “one swallow at a time” reminds me of one of my most favourite books about creative writing – Anne Lamott’s “Bird by Bird”. Recommended.

 

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One of the signature plants here in the Charente is the Hollyhock (“rose trémière”). They are astonishing plants which surge upwards of two metres and they produce glorious brightly coloured flowers. It’s not just their rate of growth and their ultimate towering stature which impresses me though.

What really attracts me to them is how surprising they are. You never know, from year to year, just where one is going to grow, you never know which ones are going to grow to the greatest heights and you have no way of knowing just when they are going to produce these fabulous flowers, not only at the tops of their stems, but apparently randomly along the length of each plant.

In a sense, I see them as the local Charentaise version of the Japanese cherry blossoms. In Japan the appearance of the cherry blossom is much anticipated and celebrated. More than their beauty, the blossom is a symbol of transience which inspires people to “savour the day” – because, like the blossom, nothing in life will last. It’s the transience of the cherry blossom which makes it so meaningful.

Well, for me, I equally anticipate the appearance of the hollyhocks and their glorious, towering flowers. I think because each and every one of these amazing plants stands alone, they inspire me to think about transience in a similar way to cherry blossom, but they do something else too. They remind me, every time, of how the future path of any individual life is so unpredictable.

Why should that be something to relish?

The essence of my working life as a generalist medical doctor was to meet with patients one at a time. I’d look forward to every Monday morning because it would be the start of a working week filled with people who would come into my room, sit down, and tell me the most amazing, unique stories.

No two people told the same story.

Understanding a patient’s story is a way of helping them to make sense of what’s happening in their life. It’s also part of what doctors call making a diagnosis. I always saw diagnosis as a level of understanding, not a conclusion, not a label, not a category to place a patient into, not a starting point in a protocol, but the beginning of an understanding.

With that initial understanding would come some sense of the past. In other words it could be the start of making sense of how the present illness had come about, what events and circumstances had contributed to it. But what also came was an opening up of a set of possible/potential futures. Doctors call such an analysis a prognosis. I’d look ahead, taking what knowledge and experience I had of people, of disease, of the typical life history of certain illnesses, and see this unique, particular patient in that context.

Doctors have to be careful when making a prognosis. It’s always only an estimate, an informed expectation. But at the level of the particular, the unique, the individual patient, the path ahead would only be revealed over time.

Remembering that kept reminding me to be humble.

Remembering that kept reminding me that in Life, we never have ALL the information. We always make our understandings and our predictions on the basis of partial, and limited information. There will ALWAYS be more to discover, more to learn, more to learn about everyone.

There’s a fairly new term in biology and philosophy to describe how the future unfolds this way. It’s called “emergence”. Emergence is the development of new patterns, new behaviours, new structures, which could not have been predicted in detail from the prior knowledge. It’s typical of all living organisms.

The individual hollyhock plants remind me of that. They demonstrate this “emergence” beautifully.

Their daily growth astonishes me. Their ultimate size astounds me. Their particular flowers amaze me. I know each seed holds this kind of potential, but I have no way of knowing which particular seed will grow a plant of this actual size, in this particular place in the garden, the driveway, the street, or the roadside.

See, for me, not knowing what lies ahead isn’t primarily a frightening thing. Sure, it’s possible to begin to imagine all the things which can go wrong, to press the fear and panic buttons, but that’s rarely very helpful. Instead, I found, and I still find, I look forward primarily with hope and a positive expectation, and if things don’t turn out that way, I reassess, take stock and consider a different future. It’s a process, not an algorithm leading to an end point. It’s a way of living, deepening and broadening knowledge and understanding at the level of the individual whilst looking forward, with realistic hope, as we interact with, and adapt to, the present.

It’s great to be astonished every day.

I love to be amazed and delighted at the unfolding present. I find it thrilling to witness the future making itself known through this phenomenon of emergence.

Hollyhocks do all that for me. Are there particular plants which are special for you? And why?

 

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