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.
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.
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 Williams, George Uki Hrab, Declan Zapala, Craig Ogden, Bridget Mermikides, John Wheatcroft, Peter Gregson Amanda Cook, Steve 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…
The Times Higher Education have run a well-written feature on the Bloodlines 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 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.
Live lecture/performance of BloodLines at the Dana Centre, Science Museum. Thursday July 18th, 7-9pm.
Here’s a short essay about my experiences with leukaemia which won a scholarship from the James Randi Educational Foundation in 2010.
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
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.
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.
I’ve reached 5 years post diagnosis.
Thank Science for evidence-based medicine.
Thank goodness for friends & family (not the BT scheme)
Thank you for reading.
The James Randi Educational Foundation (JREF) – perhaps the greatest skeptical organization in the world, hold a kinda-annual conference called TAM – The Amaz!ng Metting. Past speakers have included Richard Dawkins, Penn & Teller, James Randi etc. Not big names to all, but big deal to me.
They are holding their first non-US meeting on October 3-4 2009 in…London.
Of course I rushed to buy tickets just 2 hours after the lines opened. But that was too late. Sold out.
So after a TAMtrum, I explored other avenues (begging, hassling, extortion – normal stuff) but to no avail.
However, I came across a scholarship competition, asking for essays (1,500 words max) from students (Check! Thanks to my laziness with PhD) 16 yr and older (Check!! By some margin) and on anything related to skeptical inquiry (CHECK!!!)
Me being me, I started the essay on the day of the deadline. I started at 10am, and had to leave for a friend’s wedding at noon, then straight on to another wedding gig 250 miles away. This was my only chance, and I hadn’t had my eggs or coffee. But I whipped something up and sent it to some dear people for proofreading while I set about my day. The excellent John Gregson took instructions while I drove up to my distant gig, eventually forwarding a pdf to me, which I relayed on to JREF with the last drops of my iPhone battery, and 12 minutes to spare.
Long story short.
So Bridge & I will be attending, the essay ‘A Life Examined’ will be published at TAM and online, and I will meet some wonderful people as a consequence.
Honoured & thrilled. and also for one grateful for my sloppiness: If I was more organized, I would have bought tickets sooner, If I was more dedicated I would no longer be a student (& ineligible) and if I had the luxury of time to write the essay, my self-doubt would have prevented me from finishing it. Yay for my imperfection.
I will of course tweet (@miltonline) & report back.
Now, I always write these updates utterly convinced that they are lost in the nether regions of interspace, roadkill on the information superhighway if you will. However I still get messages from friends old and new saying “well I saw your update… ” So I feel both flattered and duty-bound to continue. Very soon I will move this blog to a more user friendly communicative one, with comments and rss and so forth, my dilly-dallying is due to technical dilemmas rather than loss of heart. Please bear with me, and offer any ideas you may have.
Health is probably the best it’s been since the whole little leukaemia thing. My hospital visits are down to one EVERY SIX MONTHS and I am off all medication. I do weights every other day and have a textbook diet- just buying myself more time people.
Career is surreal and interesting, judged an air guitar competition for the disney channel, have corporate sponsorship to do a series of concerts across the USA- that seems good, no? Still as grateful as ever to be around and trying to make the most of my little life.
There is so much to tell and share but that will have to wait to the big bloggular migration. Please bear with me and join me in that promised land of communication and joy.
Best to all!! Milton:)
Well, I have been busy with all sorts of welcome stuff (finishing off my PhD, producing CDs, composing, playing concerts and so on) and perhaps most enjoyably, completing long-overdue home improvement projects. The garden is approaching haven status and we are enjoying a little more space (for London, space and light are highly sought mythical artefacts) A fair bit of wedge has been consumed so am looking to get busier when September hits. This new focus on home improvement has led to clear forms of middle age behaviour including proudly reciting the latin names for plants, covetously browsing bathroom furniture catalogues and saying “ooh.. Now that’s nice”. Recently I looked down and noticed I was wearing sandals ANDS socks. It’s all over.
Health-wise it’s been a bag of mixed nuts, in general I feel better than ever, I have been eating really well, doing weights and getting stronger all the time. However I still get tired, and when I experience a certain amount of activity and stress (i.e. normal life) I am prone to a plague of shingles. (Actually their identity is not yet confirmed, see below) This is understandably a hard concept for my colleagues and friends to grasp, one moment I look perfectly healthy the next I am confined to an isolated hospital ward on a drip. I think I have had 3-4 extended stays at hospital this past 12 months, hopefully next year will be better.
So after an active weekend (Lovely composer course & concert) I found the usual lesions- one with a particularly juicy sample of fluid (Stop eating now) The docs are very keen to identify my infection and have instructed me to rush over with any potential evidence for analysis. So I spent the day being blood tested and having my foot gouged in a skin biopsy. Those who have finished breakfast and are not at all squeamish, click here: Extreme Footsie Otherwise avoid.Hopefully we will learn more and avoid subsequent hospitalizations which would be nice.
On the way to the clinic today, we were rear-ended by a green van (His fault entirely) Scratched up the car a bit (the van was far worse), we were shaken but unscathed. You can be driving along minding your own business, and through no fault of your own something hits you hard-just like leukeamia. However you can’t spend all your life peering into the rear-view mirror in fear of things beyond your control, there are far finer views to be enjoyed.
Yes it’s my 3 year Bone Marrow Transplant anniversary . I’ve been celebrating in the traditional fashion with a nasty infection, sleepless nights of retching, producing enough phlegm to float a battleship and reacting so badly to my meds that I looked liked I could happily walk between the sets of Dawn of the Dead, The Exorcist and Songs of Praise. But I am feeling a little better (largely thanks to Bridget, Monkey and My Mum-which sounds like a 60’s band) and have spied the proverbial light at the end of the T. So I made it 3 years whoopy-doo, hurray for science and thank Thor I did- just imagine not having read this today. What adventures await over the next 3 years only Zeus knows!
I love you all (even those of you who I don’t really) and thanks so much for the support of these three years. I owe you more than my word processing skills can cope with. SO here is a song that expresses it nicely: http://www.weebls-stuff.com/toons/marrow/
And this of course: Milt x
Still in hospital, 7 days of 3 2-hour drips, 5 cannulars and 4 collapsed veins, 21 vials of blood removed, 7 all day breakfasts and 7 roast chicken suppers later and I’m still here. I have discovered that the pain killer Tramadol gives me an overwhelming dizzying sensation whenever I hear a B-flat above concert A. Completely accurate, repeatable and blind testable. This has fascinated my consultant who has been chatting to a neuroscientist about analyzing me for the sake of psychological understanding. It was only a matter of time.
Whispers of leaving tomorrow, we shall see. Feel pretty fatigued, particularly if I have felt well enough to have some visitors but then I sort of collapse. I predict I will be back to my normal level of activity in a couple of weeks or so- but who knows. This time I’m going to take it really easy, doing the sort of pottering work that I enjoy, (writing my new book, getting on with my PhD, writing some music, finishing the hyperbow project and doing some house stuff- but all VERY slowly with no stress or rush) It’s all okay if a bit frustrating, the 6 pack will have to wait a little longer!
Sometimes feel so tired I can hardly go on but(Edit) Oh screw it, I might as well live a bit longer, got nothing better planned.
Much love to all – milt
Yes I’m back in hospital. It’s those damn shingles again. I can’t seem to get enough of them. That’s why I am now calling them Pringles.
Thanks to those who have sent well wishes, much appreciated. Keep sacrificing those goats (A joke in reference to the philosopher Dan Dennett) Bridget and the staff here are rather splendid as is my suite/ward at the Hammersmith Hotel/Hospital. I was in quite a lot of pain today, so they’ve given me an antiviral ‘iv’ for the infection and 2 little Matrix style pills (whose name I must remember) They are some kind of painkiller, and suddenly I get why Elvis wore those clothes in his later career. They are lovely. Everything is lit like a Barbara Cartland Novel, and just so…interesting. Not sure how I’m going to come off these. Damn my abstinent principles.
Until now, I’ve been REALLY well. Busy, happy and made some strides on the pilgrimmage to 6-pack mecca. I see these setbacks as my personal memento mori (sp?) lest I rest back on my laurels, and fail to be hardy. (clever)
But I’m sick, this damn herpes zoster is a virilent bugger and wants to take over my entire being. I don’t care much for the ant-viral medication, but my enemy’s enemy is my friend.
Best wishes to all. This sort of an infection can be really serious but I feel real tough about such things these days and I’m so conditioned to be a patient, that I’m close to jabbing the needles in myself, programming the machines and then going off to check how all the other patients are doing. I might even buy a stethoscope and grow thicker eyebrows .
Love (platonic) & thanks (socratic)
So if you think I haven’t suffered enough recently, you will be relieved to hear that an entire tooth has fallen out. Turns out my lower right molar wasn’t a big fan of radiotherapy and hospital visits and made a bid for freedom by decaying it’s roots. Lovely. So during my last hospital stay it fell out of my face in an impressive manner.
I spent yesterday afternoon getting it checked out at my local dentists who happen to be russian. They are lovely and competent but their english is not much better than my russian (or my regional Urdu for that matter) The first challenge is getting my name across to the receptionist. I can usually spell out my first name in a few minutes, but the fun (and time commitment) really starts with my surname. It works like this:
- I say a letter as clearly as I can and she says a different and seemingly random one back. Sometimes they are not exactly letters but randomized vowel and consonant sounds. I try to work out the relationship between my letter and hers, but without Alan Turing and a series of computers, I can’t crack it.
- I say “no” and return to 1) until after a few tries we come to some sort of vague compromise and move on to the next letter.
- This game of verbal ping-pong continues for a few months untill I feel we might have reached the end of my name.
- She reads the written name back to me and– it just sounds like a cross between an icelandic science-fiction superhero and a bad Scrabble hand: Nmaryqetdarz
- So we start at 1) again and repeat the process until we both give up and she just draws a picture of me and puts it in the ‘file’
Now the dentist herself and I can communicate a little better but she has an absolutely amazing verbal habit of inserting the word “actually” in place of any form of punctuation, any word she doesn’t know or as a general substitute for breathing. It it quite remarkable and goes something like this:
“So what we will do actually is actually drill a post actually in your gum actually and put a crown actually on top actually and do you pay for your treatment actually?”
I am not exaggerating, please go there and see for yourself.
Anyway it will take ages to fix my tooth so I will be leaning to the left eating-wise for the next few weeks.
Talk to you later, actually!
Okay I have been sent home after a bizarrely comprehensive series of tests: every reflex point you can imagine and a few you can’t. They were concerned that the infection hadn’t spread to any organs (which can cause no end of trouble) or to my central nervous system (which can cause even less end of trouble). Having convinced the docs that I was physically responsive and all confusion was naturally occurring, my cannula rwas emoved, and I was discharged with 3 weeks of oral medication and a truckload of lethargy.
I am feeling a bit better, but really fatigued. I’m spending the next couple of weeks catching up on admin, tidying the house at a barely discernible tempo, working on a couple of magazine articles, tinkering at some PhD stuff and practising the guitar part to the Fame musical (which I’ll be depping for Tom Emerton) If for a moment you think this is at all impressive and are tempted to encourage me to slow down, think again: my day is so padded out with immobile staring into space, that I am considering a second job as a Madame Tussaud exhibit.
I will hopefully get to see my nephew soon and bring him some gifts – is Proust, Stravinsky and a deep-bodied Chablis appropriate?
More soon – in lethargy,
Well I doubt that anyone is reading these sporadic updates, but I’ll write this for my own edification, and if you are here to witness it, then you are most welcome.
So I’ve been busy, lots of stuff including working with Pat Martino on the music of a feature length movie. Well my sister has had her little boy, Max, and they are both doing well after a couple of complicated days. I still haven’t introduced myself to my first nephew. Why? – I hear you ask, if you were actually listening- well it’s because…
I’M BACK IN HOSPITAL!!!
No not a relapse thankfully, but a nasty attack of shingles that didnt respond to oral medication and continued to spread. My consultant Dr. Eduardo Olavarria is one of the most respected haemotology experts in the country, and usually the most positive voice in the room, but he insisted I came into a ward in Dacie for IV treatment. So I’ve been here 4 days already receiving 2 hour IV tranfusions (700mg aciclovir) 3 times a day through a cannula. At this point I have to say that the care I am receiving at Hammersmith Hospital is of the HIGHEST level. A really clean and fully equipped room, friendly and skilled nurses available seconds after the buzzer. This is the best money can get, and for no money. Long may the NHS thrive, in my opinion a high point of civilization. All the more reason why we should protect it’s resources – let’s hope the July 1 public smoking ban encourages more people to quit- and here’s to the (idealistic) wish that humans begin to moderate their drinking- (Intoxication claims the huge majority of ambulance & emergency resources) Let’s start looking after ourselves when we have a choice in the matter so we can be better cared for when we don’t. Life is so short: we needn’t hurry it along.
The doctors were good enough to allow me out these past 3 days in order to play the guitar in the orchestra for a run of performances of the faaaabulous ‘City of Angels’ . My fellow musicians were surprised to see me with my hospital tags and a cannula on my strumming hand between IV drips. It was pretty tiring but I had a great time.
So I write this from my ward with a touch of reminiscence and reflection. Here I am again, plucked from the hamster wheel of life, just to be: enveloped in this medical womb. You can feels pretty sick in these places, but at the same time it feels somewhat wonderful to experience the most caring side of our fellow people have to offer.
The antiviral treatment is starting to work I feel, in which case I may be out of here in a few days- I will let you know when I’m out of isolation. In the meantime, I wish you all the very best 🙂
My sister, and bone marrow donor, Alex is expecting a delivery this summer, a nephew for me to corrupt!!! Hurrah! She is doing fine and we are all excited and happy for her. I have uncontrollable twinges of pain connected to my infertility- but I only want to wish my sister and family all joy and good things for little Milton (or whatever they choose, although it has a ring to it…no?)
Much love, milt x