Health & Training

Careful in the Guardian

A fantastic article by Guardian journalist/leukaemia warrior Hannah Partos on the Arts Council-funded project Careful  – which focuses on the lives of 4 nurses – written by Alex Mermikides, and with music (based on the sounds and rhythms of the hospital) by Milton Mermikides.

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Bloodlines on Radio 4 Midweek

A real pleasure to appear with my sister Alex to talk about the Bloodlines project (and data sonification in general) on BBC Radio 4’s Midweek on Wednesday 28th October hosted by the quite brilliant Libby Purves. Fellow guests included the delightful and inspirational Peggy Seeger and Amati’s James Buchanan.

Available here:

Towards The Sunlight – Digital Release

Following the successful (emotional, fun, wonderful) EGO concert at Bush Hall – a charity concert (raising close to £4000) with some of the finest musicians and friends one could hope to know – here’s another good reason to donate some more to the worthy charities. The Eclectic Guitar Orchestra’s Towards the Sunlight is a collection of donated tracks from the players and all proceeds will go to Leukaemia Research and the Anthony Nolan Trust. Enjoy.

The Eclectic Guitar Orchestra with John Williams – Bush Hall April 8th 2015

EGO Poster

On the 10th anniversary of my bone marrow transplant, you are warmly invited to a concert of the Eclectic Guitar Orchestra, in support of leukaemia charities. April 8th 2015, 7.30pm Bush Hall (Shepherd’s Bush) Tickets a mere £25
Performers include the legendary John WilliamsGeorge Uki HrabDeclan ZapalaCraig OgdenBridget MermikidesJohn WheatcroftPeter Gregson Amanda CookSteve Goss Jake Willson and an ever growing list of amazing musicians.
Please join the Facebook event for ticketing information, how you can support the event, to express interest (so I can get an idea of numbers), and a bunch of other exciting stuff to be announced… visit again for unfolding information…

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Bloodlines feature in Times Higher Education

The Times Higher Education have run a well-written feature on the Bloodlines project.

Transplant inspires siblings’ Bloodlines project | News | Times Higher Education.

Bloodlines Premiere

Bloodlines is a performance that traces the microscopic drama that plays out between a serious disease and medical treatment in the human body. It draws on its makers’ personal experience of Acute Lymphoblastic Leukaemia (which I developed in 2004) and its treatment through intensive chemotherapy, radiotherapy and a bone marrow transplant (donated by his sister Alex Mermikides, who is directing the performance). Also collaborating in the performance is Ann Van de Velde, a clinical haematologist involved in the care and treatment of blood disorders such as Leukaemia, and Anna Tanczos, a digital artist specialising in science communication.

‘…is the human body a soul-less, self-less object at the mercy of automatic internal processes…or is it a precious vessel containing a unique individual…?’

Sian Ede Art & Science. London and New York: Taurus Books, 2010. p.145

Bloodlines premiered at the Dana Centre on 18 July 2013. Future performances will be announced on the Events page.

Here’s a bootleg from the first performance.

Bloodlines is a Chimera Network project
For more background on the project see Bloodlinesproject.com

Bloodlines at the Dana Centre, Science Museum, July 18th 7-9pm

Live lecture/performance of BloodLines at the Dana Centre, Science Museum. Thursday July 18th, 7-9pm.

 

Diagnosed with Leukaemia, John was given hours to live – but survived thanks to a bone marrow donation. How can ethically sourced stem cells save lives? Experience an immersive and exploratory performance created by a survivor and his donor.

John’s disease, Acute Lymphoblastic Leukaemia, is ‘a deadly disease for which the best available therapy is only applicable to a fraction of patients and is itself potentially lethal’ (Dr Adele K. Fielding, Haematologist UCL). That therapy – a transplant of blood stem cells – is both potentially lethal and life saving. It is also miraculous, mysterious and slightly macabre.

Bloodlines conveys the science and the experience of this last chance treatment in a performance featuring a haematologist, a musical score created from blood cell counts, kaleidoscopic visual effects and dance. Join us in the Dana Cafe after the performance for a discussion with the makers: learn more about stem cells and becoming a donor and about this collaboration between artists and medical scientists.

Bloodlines Team:


Alex Mermikides: stem cell donor and direction

Milton Mermikides: leukaemia survivor and music

Ann Van de Velde: haematologist and performer

Anna Tanczos: videoscape

Adam Kirkham: dance

Bex Law: dramaturgy

More details about Bloodlines can be found here. This event is supported by the Arts and Humanities Research Council.

A Life Examined

Here’s a short essay about my experiences with leukaemia which won a scholarship from the James Randi Educational Foundation in 2010.

http://www.randi.org/site/index.php/swift-blog/1218-a-life-examined.html

BloodLines

A Chimera Network project Bloodlines is a performance that traces the microscopic drama that plays out between a serious disease and medical treatment in the human body. It draws on its makers’ personal experience of Acute Lymphoblastic Leukaemia (which I developed in 2004) and its treatment through intensive chemotherapy, radiotherapy and a bone marrow transplant (donated by his sister Alex Mermikides, who is directing the performance). Also collaborating in the performance is Ann Van de Velde, a clinical haematologist involved in the care and treatment of blood disorders such as Leukaemia, and Anna Tanczos, a digital artist specialising in science communication.

‘…is the human body a soul-less, self-less object at the mercy of automatic internal processes…or is it a precious vessel containing a unique individual…?’

Sian Ede Art & Science. London and New York: Taurus Books, 2010. p.145

Bloodlines was presented at the 2013 European Bone Marrow Transplant Conference and will premiere at the Dana Centre on 18 July 2013.

A Life Examined

A Life Examined

True Story.

In November 2004, in a particular English human body, in just one of its 100 trillion cells, a very small event took place.

This event was not foretold by any soothsayer, Tarot card, or by the movement of an arbitrary set of stars.  It was not intuited on Oprah, instigated by some external entity or punctured effigy; nor was it justified by any sin in this life or any previous.

And yet it happened.

In one blood cell, specifically a precursor T-cell lymphocyte, one section of chromosome 9 and another from chromosome 22 broke and changed places.

This translocation reordered a sequence of DNA, creating the BCR-ABL fusion protein, in that one cell.

This silent, miniature drama, occurring in a lymphocyte less than 7 micrometres across, a 10th of the width of a human hair, would alter drastically the course of my life.

Acute Lymphoblastic Leukaemia allows immature lymphoblast cells to multiply exponentially and crowd out the essential function of platelets, red blood cells and white blood cells, so on November 22nd 2004 I, a non-smoking, non-drinking, healthy 33 year old nerd, was isolated in hospital with bruising, shortness of breath, over 400 times the normal level of white blood cells and the intriguing feeling of being about to die.

No crystal, incantation, hand-waving or water with excellent memory skills could help at that point.  Two objectives needed to be met:

1) Stop the growth of leukaemic cells by killing them

2) Prevent objective 1) from killing me

A busy schedule of chemotherapy, radiotherapy, monitoring and strategies to prevent infection was ordered and executed by doctors, consultants, researchers and nurses.  Medical professionals like these, who I soon got to befriend, admire, learn from and entrust with my life, are rarely honoured and often undervalued.  Moreover they are insulted and condemned as close-minded for not hugging the fuzzy blanket of pseudoscience or drinking from the soporific fountain of woo.  And yet, they work on the front line making real differences to real people. Such is the widespread unjust vilification and under-appreciation of reality and science.

During treatment I was offered, by well-meaning friends and deluded strangers, advice on homeopathy, apricot seeds and mystical intervention.  All of this I politely but firmly refused and ignored. When asked by a family friend, how the homeopathic medicine she left me was helping – which was in fact somewhere deep in the London sewage system presumably collecting some new and pretty intense memories of its own- I truthfully answered that I found “Nothing worked as well”. When a whole church congregation in Greece insisted on praying for me at the time of a particularly important and difficult treatment, I gave them a phony time, date and place at which to aim their psychic energies.  In fact, I directed them to a 2nd division football match of which I had no interest.  A dull, goalless draw, I later discovered. Others were nastier with their advice, a woman, who I did not know, insisted that I saved myself by “accepting Jesus before I crossed over”.  I wrote back politely, thanking her for the top tip, but saying that I would also be checking out the Devil, as my mother always taught me to look both ways before crossing over.

I refused obstinately to appeal to an imaginary higher power, even at the lowest and most precarious moments, of which there were several. I chose to observe and engage with the sharp, hideous, beautiful reality rather than hide behind the veil of cowardly religion.  I’m not particularly brave but simply put, I have no faith, Pascal’s wager doesn’t take my fancy, and I have no aspirations to make it on to some celestial guest-list.

It was deemed a good idea for me to have a full bone marrow transplant: A hard reboot of my blood system, For this, I needed to destroy my existing one with total body irradiation – the most intense allowed, followed by the introduction of donor bone marrow.  To prevent this new immunity system from attacking me, the ‘host’, it is necessary for this donor bone marrow to match my own. (This knowledge was of course gained through medical research, study of Haemotology and from the poor people who succumbed to Blood cancers in our medical records. Not even the most flexible semantic contortionist could gain any relevant knowledge from any sacred text).  When I asked my consultant, a highly respected Haemotology expert, how the new marrow finds it way from a catheter in my vein to my bone marrow, he simply answered “We have no idea – but we are working on it”. A testament to the humility but perseverance of science.

My only sibling, my sister Alexandra, was tested as a match for my blood. Not by psychic cards, divining or the swinging of a crystal but by HLA (Human Leukocyte Antigen) testing. Of course we knew the chances of a match, thanks to our understanding of genetic inheritance.  While waiting for the results I made a point of not hoping or praying for this 1 in 4 chance, in fact I remember as I entered the consultant’s office, I uttered a quiet but clear ‘Fuck you, God’ just to make sure I hadn’t, in the tiniest probability of his existence, inadvertently pleased him.

We matched.

The bone marrow transplant and subsequent recovery although difficult, precarious and complex, worked. And here I am, 4 years on, my blood type is switched from O-positive to O-negative and I have female blood. (In fact the engraftment was tracked by using an X and Y-chromosome dye, and simply counting…) I am healthy, busy and skeptical; science has afforded me a few more precious years to be in this world.

Since my transplant, I have released 4 albums, scored 2 movies, judged the world air guitar championships, written a thesis, played guitar for the Queen of England, laughed until my sides ached, taught hundreds of students, wasted precious time debating with anti-vaxxers and creationists, learned a tiny fraction more about the universe and touched the hem of George Hrab’s suit. Now that’s an objective reality to which I don’t object.

I am in no way special or chosen, my life may not be important in any way other than to my wife, Bridget, my family and close friends. But it is the only one I have, and I am grateful for every second of it.

Objective reality exists. Yes, even if it happens to include multiple dimensions and a time that is bendy. The relativists’ argument – as O’Reilly limply tried on Dawkins – that all truth is subjective collapses in on itself.  The logic of expressing the objective truth, that all truth is subjective, is doomed from the start. Yes, there are different beliefs, and interesting questions about determinism, electron clouds and string theory, but ultimately we all live in an objective reality that affects the bodies of the pastor and heretic alike, a truth that still exists no matter what we, or anybody decide about it.  Furthermore, understanding objective reality holds great power.

Which creationist would have the courage of Neil Shubin, pointing at a small area of rock in inhospitable Arctic Canada and making the falsifiable claim that somewhere within it should lie the fossil of a creature no human had seen before? Which psychic has ever made such a clear, accurate and impressive prediction as this – (certainly worth a cool million) – A tetrapod fish in this particular layer of rock in this tiny corner of the globe? And there it lay, undisturbed for 375 million years, patiently waiting, twiddling its newly evolving thumbs, until we evolved to be smart enough to look for it. Yet the intelligent design movement hardly batted an irreducibly complex eyelid.  But a growing number of us do see the wonder, power and beauty of objective reality. Long may it continue, as we learn to shrug off our evolved propensity for delusions, solipsism and self-importance.  The understanding and developments that lie in our future will stagger our already overwhelmed minds.

So as I sit here writing, and sipping my coffee – the caffeine molecules lovingly preventing the docking of sleep-inducing adenosine in my neural receptors, creating a mild but delicious euphoria – I have the privilege of reflecting on my life.

I owe my life to Science – not a divine plan, but that is not why I admire it, nor why I see it as the pinnacle of civilization and evolution.  The scientific method is the only mechanism by which we can circumvent our confirmation biases and propensity for self-delusion and understand our tiny, but truly awesome place in the universe. It is valuable because it simply does not care what results we want from it, it gives us the truth regardless. We have written ourselves out of the equation. The examination of everything: the tides, the stars, bacteria, Stevie Wonder’s groove, photons, blood cells and galaxies, serves to enrich and extend all our lives, in ways that no religion or pseudoscience could begin to dream. Why lower our heads and claim to have easy answers, when we can look up to the skies and tackle the hardest questions?

It is only through this humble but insatiable curiosity, skeptical examination, rational reflection and furtive unweaving, that the rainbow becomes yet more beautiful.

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