Opening up conversations about death

This is a post I've written for a blog called Not Being Morbid, hosted by Emma Edwards who is also the facilitator of Bristol's excellent and vibrant Death Cafe.  I'm reflecting again on what excites me about getting involved with a community of people eager to open up conversations about death and dying - what an inspiring bunch!

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Maybe it’s just me but death seems to be everywhere in Bristol this year - my head is exploding with the smorgasbord on offer! You can find a Death Café, and a whole range of death-themed events, in this year’s Mayfest (connected to the International Public Health and Palliative Care Conference 2015), take tours and create art at Arnos Vale Cemetery and, in October, see Bristol City Museum’s new exhibition – a cultural exploration of death. 

It’s all good news to me, and I guess it’s just proof that when you are sensitized to something you start to see it everywhere. My journey towards wanting to understand and talk more about death started when my mum was diagnosed with the terminal illness Motor Neurone Disease in 2010. She moved very quickly from absorbing the shock of the diagnosis to wanting to live her precious life as fully and wholeheartedly as she could, inspiring others as she lived. She died in 2013 but one of the gifts since she passed away has been to find myself in almost daily conversations about death, grief and loss.

Initially, I found myself wanting to talk and write about the cruel disease she suffered from, which took her movement, her speech and her breath in rapid succession. I knew MND from my scientific studies as a neuroscience PhD student, and it exasperated me that 15 years later we still hadn’t cracked why people get MND or found a way to cure it. But I know it’s not through lack of trying – there is a huge community of dedicated researchers and health professionals making slow but sure progress on diagnosing and treating MND. And I realised that what I was really looking for was an explanation for her death, hoping, even, that if I could understand it then perhaps I could magically undo her tragedy.

Over the last year, however, I’ve found myself wanting to step back from the details of MND to the broader questions of how we live well and die well. I’ve been really inspired by books like Atul Gawande’s ‘Being Mortal’, challenging us to embrace death as a part of life, and to question the role medicine does and should play in shaping the end of our lives. Through my mum’s story I find so much that encourages me to be more honest about the inevitable relationship we all have with death; in turn that has also helped me to embrace life more fully.

One of my mum's sculptural ceramics - becoming

Working with Emma and others at Not Being Morbid, we're hoping to hold a series of events in Autumn 2015 that offer people more opportunities to talk about death and loss. We want to create events that are inspiring, honest and heartfelt. My mum was an artist and I’d like to show some of her nature-inspired and life-affirming work, and invite others to contribute their work and their stories. Emma and I are also putting together a programme of events, including workshops, talks and films, all touching on different facets of death and dying, loss and grief.



It’s all with a view to opening up more mature, nuanced and honest discussions about the end of life. To my mind, we can't talk too much about it.

Coming back to the blog

A lot of time has passed since I last posted.  I've been to Indonesia for nearly 2 months, writing and enjoying the incredible softness and warm-heartedness of Bali.  I met so many wonderful and significant people there, people who had experienced death and loss in many different forms, and who were willing to share their stories with me.  As a result my project is undergoing a gentle but steady evolution.  Like a river, it's now braiding into separate strands, that may fuse together again at some point....

One stream that I want to follow is to create a space for people to discuss and share their losses and griefs - a death cafe, if you like.  It seems to me we have so little opportunity to do that, and one of the striking things about Bali was the ease with which people talk about, celebrate and incorporate others into the experience of death.  In Balinese Hinduism, the belief in reincarnation is absolutely core, but whatever we think about what happens after death I feel we could benefit from having more about death and loss in our lives!

My hope is to create an exhibition, drawing on my mum's work and my own, that creates and holds a space for people to share their experiences, reflections and creative work about living and dying.  I would hope to include my mum's beautiful ceramics, alongside my writings and some other pieces I want to create.  The idea is embryonic, and there is a lot to prepare and think about, but I will keep you updated.  Likely date is May/June 2015 in Bristol.

In parallel, I'd like to pursue some writing that helps to share the developments in research and clinical practice for MND.  Having just attended the Motor Neurone Disease Association Annual Symposium in Brussels (Bali to Brussels - big shock!) I was inspired by the enormous energy and dedication of people working on MND.  I'll post something on the session that struck me most - on end of life decisions - before Christmas, but I would really like to help give voice to all of the activity and ideas that are emerging in the field.  I've just sent off the first emails requesting interviews from some of the people I met at the meeting, my voice having dried up to a harsh squeak at the meeting itself!  First up will be Dr Martin Turner from Oxford, an incredible thinker, researcher and clinician that I first met in January 2014 and saw again in Brussels.

I'll try to post more often, and to get some other writing online!  New Years' Resolutions abound.

With love and warmest wishes for a creative and peaceful New Year,

Pip

Insights from Ayurveda?

In my last post I was asking about how we could get insight into whether there is a ‘type’ of person that is more likely to suffer from MND.  I wondered whether there might be insights from traditional forms of medicine, such as Ayurveda, that type people according to physical and mental attributes and use that typing to understand the origin of and treat their disease.

I should make it clear here that I’m not asking for, or expecting, any insights into treating MND with Ayurveda.  As far as I know, by the time MND manifests and somebody has symptoms, there are currently no treatments – from any medical tradition – that can reverse the disease’s devastating trend.

But back to the idea of types.  Ayurveda is a several thousand year-old medical tradition that takes a very holistic perspective – humans are not ‘linear beings’ and their spiritual and physical evolution is happening at the same time.  To get some first insights into Ayurveda beyond what I could find on the web I spoke to a friend of mine, who used to work in the Western medical system (in cancer care) but is now a yoga teacher and training as an Ayurvedic practioner in New Mexico.  She studies with Vasant Lad, who was one of the first people to bring Ayurveda to the West.

She introduced me to the idea of Ayurvedic doshas – which I had previously only encountered on products in the Body Shop – which are shorthand for a combination of qualities that tend to cluster together.  There are three dosha types – Vata, Kapha and Pitta – each with different attributes, and the dosha constitution ('prakriti' in Sanskrit)you have when you are born will generally be with you for life.  Most people will have a dominant dosha (either Vata, Kapha or Pitta), many will be di-doshic (two doshas of equal strength, and the third of lesser strength) and there are a very few people who are tri-doshic (with all doshas having equal strength). Everybody has all doshas present in their bodies, it’s just the relative amount of each that differs.  It will also be generally consistent through all of your body systems – skin, digestion, circulation etc – although the exception (of course!) is the mind (or heart-brain as it is known in Ayurveda), which can have a different dosha profile to the rest of your body.

MND is described on sites promoting Ayurvedic treatment as associated with Vata imbalance.  According to Vasant Lad’s description, Vata is the ‘subtle energy associated with movement — composed of space and air, and governs breathing, blinking, muscle and tissue movement, pulsation of the heart, and all movements in the cytoplasm and cell membranes. In balance, vata promotes creativity and flexibility. Out of balance, vata produces fear and anxiety’. I asked my friend if MND being attributed to a Vata imbalance means it only shows up in ‘Vata-type’ people, but a vata disease can develop in any dosha type.  And Vata imbalance is also cited as the origin of Parkinson’s and other neurological disorders.  Furthermore, it could be the other doshas acting to ‘push’ Vata out of balance.  It’s just a question of where (i.e. in which part of which system) the imbalance will show up.

This led us to discuss the idea of a ‘weak link’ – something that everyone has and is an easy entry point for disease (khavaigunya). This could stem from childhood illness or injury, or something inherited – either genetically or behaviourally.  I know this meant something to my mum.  When she was about 30, an Indian taxi driver – who claimed intuitive powers - told her that her weakness was in her nervous system.  She took him very seriously at the time but didn’t think much about what he said until she was diagnosed with ALS.  Is there any way he could have seen a ‘weak link’ in her nervous system from the short time he was with her?  It’s impossible to say.

As usual, I feel full of questions.  My scientific mind would like to interrogate the Ayurvedic approach further.  It feels frustrating to me that if there is a medical system that has brought insights to many millions of people over thousands of years that it’s not part of mainstream thinking in the West.  I wonder what the distribution is of people across dosha types, and whether there are an infinite number of different dosha combinations that all occur with equal frequency.  In my geeky moments I wonder what it would look like if you could measure all of the different dosha compositions and plot them on a three-dimensional graph.  And I wonder what it would reveal if we could analyse and record dosha compositions at the beginning of life and then follow that cohort of people through to see what diseases they go on to develop.  Would it be random, or would we see associations of particular diseases with particular dosha profiles?  I’m sure it’s the latter, but it’s hard to know.  But this would be one of the few ways I can think of to test the explanatory, and predictive, power of Ayurveda.  So what would it take to get that kind of approach included in some of our largest cohort studies, like the Children of the 90's study in Bristol?

But if any disease can occur in any dosha type, then in the case of MND it might not be possible, or helpful, to associate the illness with any particular dosha composition.  I imagine any Ayurvedic practitioner would say that they work more with the person in front of them, and less with abstract concepts.  But it would be interesting to talk to Ayurvedic doctors who have seen a number of patients with MND and to hear what they think.

I wonder whether the complexities of the Ayurvedic approach might be telling us what the Western medical approach tells us too - it’s complicated.  There are lots of different potential ways and reasons someone might develop MND.  And it’s likely going to be a different story for everyone.

The MND 'type'?

A question that has piqued my curiosity for some time is whether we can say anything about the 'type' of people who get MND.  'Type' could include elements of people's personality, but it could be any traits that are more likely to be associated with people that have MND than those who don't develop the disease. Given that about 90% of cases of MND seem to arise spontaneously in the population (that is there is no family history of the disease), then it would be extremely helpful for early diagnosis and possibly intervention if we knew which people would be most likely to go on and develop MND.

Of course, this would never be an exact science, and we have to be cautious about looking for easy patterns.  If learning about MND teaches us anything it is that there are likely a huge variety of reasons why someone develops this disease.  Those could be any combination of genetic background, developmental, environmental, or lifestyle factors, and likely the interaction of all of them over time.  We can't afford to narrow our view to exclude people that don't conform to a stereotype, but equally, a rigorous understanding of type might give us some predictive power, an insight into the mechanism of the disease, or a better grasp of which treatments might bring benefit.

So if there is a 'type' of person that is more likely to develop MND, what kinds of ways could we approach learning about that?

We have the epidemiological data: 1-2 people in every 100,000 will develop MND in any year, and the average age of onset is 57 years.  Slightly more men than women develop ALS, but the proportions even out in older patients.  There seem to be some populations where MND occurs more frequently than we would expect, and one well-known example is in top division Italian football players.  But building up a more insightful picture is really difficult because MND is rare, and so requires big populations to be confident that any increased incidence is not just due to chance, or because of some specific but unusual reason.

This information feels frustratingly crude.

More recently, we are starting to build up a picture of the kinds of things people with MND are exposed to in their lives.  In one US study, MND was more frequently associated with people who had exposures to fertilisers and pesticides, and this has been found - although not consistently - in other studies as well.  Questionnaire-based methods have shown that MND sufferers have higher levels of work and leisure physical activity, and Dutch researchers recently found that increased leisure time physical activity was correlated with an increased risk of MND.  The hypothesis is not that the physical activity causes MND, but that the type of people that favour physical activity are also the people that are more likely to go on and develop the illness.

These are some tantalising clues.

We have the experiences of people who work closely with MND sufferers.  Physicians see hundreds of patients with MND, and some will speculate - with due caveats - about the traits they feel they see more often.  The archetype is someone slim who has led an active life - a 'go-er and do-er', and had little illness to date.  I was really struck by a paragraph that echoes this in the excellent and moving memoir - Rowing Without Oars - by Ulla-Carin Lindquist:

"Who is your typical patient?" I ask Nurse Margaretha.
Her reply comes straightway: "Well-educated, highly intelligent, with great integrity.  Seldom overweight or careless with themselves.  Often sporty.  Eighty per cent of my patients are what one usually calls type-A individuals.  They are high achievers with integrity who make huge demands on themselves."

I recognise all of those features in my mum.  Which is not to say it's true - this is the MND type - but it is interesting.

But it seems to me we need to go much deeper.  We know people come in different shapes and sizes, with different personalities and dispositions.  What we don't understand is how those features relate to illness and wellbeing.  I wonder if there are traditions, other than the Western medical tradition, that are more comfortable with 'typing' people.  I'm thinking of systems such as Ayurveda and Traditional Chinese Medicine.  It might seem a bit far-fetched, but I'm going to investigate.  I'll let you know what I find out!

Ice bucket challenge

Not many people will have escaped the global craze that is the Ice Bucket Challenge.  I'm not even sure how it started - I think with celebrities in the US - but it is doing an incredible, if fleeting, job of raising awareness of ALS/MND and raising money for associated charities.

I know quite a lot of people are skeptical about the value of the challenge.  And I can understand why. It's all too easy to get on board with the latest viral craze - especially when it has a link to a charitable cause - and then pat ourselves on the back that we have 'done something'.  But I think there is real value in this frenzied chucking of ice cold water over our heads:

• It raises awareness of the disease, or even just the name Motor Neurone Disease (which is barely known and often confused with MS or other neurodegenerative disorders)
• It propagates, and by nominating others we have the opportunity to share and pass on each other's stories.  I've been touched by the number of people that have mentioned my mum in their challenge.
• It raises money that is vitally needed and well used (currently more than £4M in the UK).  Whether it's funding research, or helping people to get the aids they need to live with MND, the UK MNDA does fantastic work.  And they are overwhelmed by this lump of funding that has suddenly come their way.  The craze will soon be over, but the ripples of what that money can do will be long-lasting.

And if you haven't seen enough of these - here's mine - http://vimeo.com/104762706

Cells on the edge - Part 1 (of many?)

I'm wanting to try out what it's like to write about the science of MND. There are so many ideas that interest me but it feels difficult to absorb and distil what has already been written, while also adding something of my own... Here goes with an intro to why motor neurones have it tough.
"If you're not living on the edge, you're taking up too much space...."

Whoever said that - maybe a branding agency - might have been talking about evolution rather than extreme sports.  Across the board, natural selection hones biological systems to perform as well as possible in a given context, often with little extra slack.  What I'd like to start to explore in this post (it's a big topic, and it's going to be a bit clunky!) is whether the forces of evolution drive motor neurones to the limits of their capability, and whether this therefore makes them particularly easy to push 'over the edge', as happens in Motor Neurone Disease (MND).

As the name suggests, motor neurones are the primary cells that fail in MND.  The 'lower motor neurones' are huge cells with their bodies in the spinal cord, and with their long axons (the cables that carry the nerve impulses) travelling out to the muscles all over the body.  A millivolt nerve impulse propagates its way down the axon, and when it reaches the end - the terminal - it causes a squirt of chemical onto the muscle and causes the muscle fibre to contract.  This exquisitely organised hybrid of electrical and chemical signalling is played out in the synapse, with every motor neurone making hundreds or thousands of synapses onto each of our many millions of muscle fibres.  And every time  a neurone fires it has to be reset immediately afterwards, ready for the next nerve impulse.

Firing a few nerve impulses now and again doesn't sound too stressful for a cell, but in fact the energetic demands of this process are huge.  Neurones are constantly working to maintain a different balance of chemical ions inside the cell than outside (giving rise to a charge, or potential difference across the cell), without which they would not be able to fire the millivolt electrical pulses that encode their signals to the muscles.  Added to that, the chemical that the motor neurone releases onto the muscle - acetylcholine - has to be manufactured, released and recaptured, many thousands of times over a day.  Motor neurones - like all other neurones - have their own inbuilt energy generation mechanism in the form of mitochondria, and in motor neurones these are found both in the cell body and in the terminals, providing the power needed to keep the synapses going.

Not only are the energetic demands of neurones huge - the brain uses an estimated 20% of all of the energy in the body - but motor neurones seem to have it particularly tough.  They are huge, complex cells, and they fire almost constantly.  Neither of those factors makes for an easy life.

A sense of scale might help here.  The longest motor neurones start in the base of the spinal cord, and reach their axons to the tip of the big toe.  If that motor neurone cell body was the size of a cricket ball (10 cm in diameter), the cable running to the furthest muscle in the body would be 1km long!  1 km long, but only 1 cm wide.   That sounds like a very vulnerable route for all of the essential supplies - including the energy generation machinery - that have to travel from one end of the cell to the other.

So why might having a high energy demand - as we'd expect for a large, complex cell that fires all the time - be problematic?  Well, as anyone who has a toddler knows, lots of energy causes lots of mess.  The energy generation process creates toxic byproducts that have to be cleaned up, constantly.  If they are not the cell will suffer damage, and over time that damage can accumulate and kill the cell.

What we understand so far about MND (see here for a good synopsis of what goes wrong in motor neurones) is that something often goes wrong with energy generation and housekeeping in the motor neurone.  This may be a cause or a consequence of the illness - we don't know - but diseased motor neurones show a variety of different signs that all is not well.  They may have clumps of defective proteins, evidence of damage by 'free radicals', or other signs of stress.  In other words, something is pushing them to the brink of what is survivable.  And sometimes that will be too much.

I can see there's a lot more to explore here....!  In the next post about cells on the edge, I'll explore some of the questions that take us beyond the fundamental biology of the system.  If motor neurones are so close to the edge, then why wouldn't everyone get MND?  Or maybe everyone would if they lived long enough.  Are motor neurones more vulnerable than other cells?  And why might a system be 'designed to fail'?

If this has piqued your interest, you might want to read more about motor neurones in general, or specifically about alpha motor neurones (the ones that innervate our muscle fibres).  Please share other resources you think are good!

Learning from others

I've been finding it hard to get to writing - all too easily distracted (the 'part time' job expanding to fill more space than I am willing to give it), poor time management, and perhaps the slightest edge of fear all stopping me from throwing myself headlong into this project.

So this evening I thought that if I couldn't write, at least I would read - The Long Goodbye by Meghan O'Rourke - a recommendation from my friend Nicole.  I've devoured half of it in almost a single sitting, between my garden and my sofa.  There's a wonderful review of it here on Brainpickings.

It's a memoir by a woman a little younger than me, who lost her mum from cancer at the age of 55.  O'Rourke was so attentive and present through her mum's illness, death, and the aftermath.  And I recognise so many things she describes beautifully in her vivid, honest and raw prose.  It's almost her throwaway comments that catch me the most - "Time doesn’t obey our commands. You cannot make it holy just because it is disappearing."

I remember being struck by that as my mum came to the end of her life.  There were still the banal things to do, and in a sense it was the banal that held the world together.  Washing, dressing, walking in the garden, making and eating food, sleeping.  All of these things have to be done, or were things that she could and wanted to do.  Every day.  Until her very last day.

But she also had a way of making all time holy.  Such that eating a slice of hard-boiled egg on our patio, in the sunshine, just a few days before she died, had a reverence and a joy that I might never know.  She could be transported into raptures by a beautiful moment, and would just close her eyes and smile.  She wrote:

Yes,life is uncertain and life is fragile.To be reverent of it is to show gratitude for this precious gift of life.