ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I’m 39 years old, no history of illness, Ironman finisher who has been diagnosed with myeloma. Did not see this coming. This blog summarises my journey from unexpected diagnosis through the treatment path. My aim is to use myeloma as a catalyst for living a better, more fulfilling life and documenting the changes I am making in all aspects of my family and work commitments.

The Death of Tom

Ask any of my friends who are culturally attuned to the world of art on their opinion of what I think constitutes art and, to a person, they will roll their eyes and recall one of many debates we have held where we have disagreed on this topic.

My opinion is grounded in the following assertion:

If I can create it, it is not art.

I say this as a self proclaimed artistic vacuum.

I was the guy who got turfed out of art class for losing my temper and screwing up my paint by numbers picture in primary school.

Both my kids have better handwriting than me.

Without the advent of computers to mask my lack of penmanship, there is no way I’d have held steady in any career.

So what has this got to do with Myeloma?

Well, Jenn and I took the boys to Liverpool during their half term, starting at the Albert Dock and spending some time in the Tate gallery.

Now I say this with not a hint of hubris or arrogance; but much of what is housed there, I could do.

A pair of children’s shoes in a glass box?

Check.

The Venus de Milo face first in a pile of clothes*?

Sign me up for art school!

*named Venus of the Rags if you are keen to take a look. It of course clearly represents an ironic comment on cycles of consumption… Not my words…

I walked away with a buoyant spring in my step as I pondered my new and hopefully lucrative career move.

But my ill placed aspiration was tempered by one installation (I’ve got the lingo already) specifically.

The Death of Tom, by Glenn Ligon.

I won’t detail here it’s original motivation or subject, save to say it’s a short and visually manipulated old black and white film which I found uncomfortable to watch and hard to forget.

My interpretation is far removed from the original intent, but on face consumption, it depicts what I felt dying might look like.

A black screen punctuated by blurry white lines and images. Think old b&w tv. Remember when you switched them off? The whiteness shrunk into a small dot in the centre of the screen, like I’d imagine falling into a well would look like, then disappears.

That image is kind of what I assume will happen.

(And then I expect I’ll wake up in the new world, surrounded by loads of attractive girls, a garage full of sport cars and sunshine blazing down on me in my new beachside villa… (Jenn, I am of course kidding about the cars 😉 )

I apologise if this makes unpalatable reading, but I found this an interesting experience as someone who has had to contemplate his own mortality of late.

Before you interpret this as a cry for help, it isn’t. There are people out there in way more need of emotional help than me.

And truthfully, I have not spent my time  pondering dying any more frequently since diagnosis, than I had previously. When Max and Seb came along, I promised I’d wind in many of my riskier past times and decision making in general! (I acknowledge that the flying goes against this declaration, and the Mustang, and my choice of friends… 🙂)

But this work really hit home. I guess tying in with the latest set back in chemo, it was not the most appropriate piece of art to discover.

Odd to think that even when you are gone, one thing that is certain is that life will continue to carry on in your absence. House will still be there, people will get older and all without you. Nothing revelatory about any of this but that film just smacked it right home.

Despite this momentary philosophical blip in my thinking, I am still unwavering  in my expectation of beating this into submission for a considerable period of time. There are so many reasons not to dwell on the crapness of all this and even when I was stuck in hospital hooked up to drips, with a busted back and passing out in the face of a heavy cough, I never once felt like life was draining away and that I would not be ok. If anything, I am way more attuned to that feeling of being alive. I can only imagine what people on the edge feel like but I for certain am not there.

I don’t say this based on blind faith; I take optimism in what truths are placed in front of me.

Most importantly, I feel good. There are other drugs still available to try and procedures I can take advantage of. These are facts.  And medical trials, although not readily available today, look very promising in this area.

More emotive but no less important are my motivations for staying strong and with the program.

Many of you won’t know this but I can occasionally be quite stubborn. (I know, I hide it well)

I hate losing.

In Jenny, the boys and even though I don’t see her very often, my god daughter, I have 4 people who I intend to be around for as they get older. And of course my wider circle of family and friends, with whom I intend to hold many more “art-debates” where I am obviously right and you lot clearly need re-educating in reality. 🙂

So pencil this in your diaries.

To celebrate my sons 40th birthdays, I promise you all an all expenses paid trip to the Jumeirah “Sea of Tranquility” lunar resort with premium economy seats (I probably won’t be able to afford Business unless my art career takes off) on the Space X direct flight! (no ISS lay overs here!)

Final word to the artists among you. Please explain to me why this box on the floor is deemed to be a cutting edge piece of work? (at least the glass box mentioned above had shoes in it)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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3 Comments

  1. Mike Day 8th March 2018

    I am an Artist not just a P*** artist either. I consider what I produce to be art, however I am in your camp when it comes to S***, the piece you show being typical. It is not art it’s crap and those who think of it as art are without doubt at the very least mistaken.

  2. Mike Day 8th March 2018

    I wrote a reply the system did not like the bad language I used regarding the art you discussed

  3. Cliff 9th March 2018

    It’s not just a box. It the position in relation to the other items in the room and the tangential line positioned north/south.

    Yeah, it’s a loads of bollocks.

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