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.


5 Years

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.

Milt x


Amaz!ng

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.

I won.

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.

m


AT EFFING LAST

This me

… I have figured out (with my brain indicated here – and guru Edd Hannay) some semblance of order to my intertubing activities.

My professional (hmm) site is here miltonmermikides.com or cheekily, organizerofsound.com

Miltcentral.com has been sterilized  after a long period of isolation. Cleaner, faster, fitter.

MiltLatest is here, well here. All RSS-friendly and fed to both of my, rather hungry, sites.

A new lease of life for MiltCentral?  We shall see,

Oh, me? I’m fine, by the way.

x


Into the Void

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:)


Shingles and Bumps

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.

Hobbling off,

Milt


BMT + 3 years

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