The Good Delusion
I have a secret. I have been wrestling with divulging this secret for a while now. After a titanic mental struggle, and maybe because, like the tramp’s sandwich board says, ‘The End is Nigh!’ the truth has won the day and it’s time to tell the world. Brace yourself; I mean it. Not just mentally prepare for it, I mean put down the coffee and physically hold onto something sturdy. I am a superhero!
That’s right, I am a superhero just like those characters from the Avengers and X-Men. I expect your eyes are rolling in anticlimax and disbelief, wondering with a self loathing rhetorical reluctance, “Okay Eamonn, if you are a superhero, what are your superpowers?”
I’m glad you asked. A funny thing happens when you are diagnosed with cancer, especially of the terminal brand, suddenly you can do things that you couldn’t before:
- I can be a complete arsehole and be forgiven immediately. In fact it seems that people assume that because I am terminally ill I must be better person in general.
- I have been empowered with physical energy and mental focus by my super soldier serum (the consultant calls them steroids.)
- I can sermonise my deranged navel gazing and strangers will listen mesmerised by my Yoda-like words of wisdom.
- And the greatest power any man can possess, I can conveniently get out of any chores set by my wife with a single puppy eyed, frowny faced, head tilt. “I’m…so…tired…”
Of course every superhero needs a costume and a name don’t they? Well most days my costume is that wonder of 21st century indoor male fashion; loungewear. That’s right, you know from Next or Marks & Spencer (although surprisingly, I must recommend the Next versions; softer material and less gaudy patterns. Yes, I’m a superhero, but tartan, really? With my complexion?)
I confess I have struggled to find an original name. Between Marvel and DC comics, they have pretty much sewn up every possible superhero nom de guerre, and knowing a little bit about the laws regarding intellectual property, I wouldn’t want to find myself in an embarrassing legal wrangle with the beloved Stan Lee.
Where do my powers come from? Cancer of course. Cancerman though; I mean that’s more supervillain than superhero isn’t it? Maybe I should stop procrastinating and I’ll just stick with my own name phonetically, A-Man, and in parenthesis below (with cancer). I’m not the only person with these super powers so I would have to consider our team’s name too. The X-Men are mutants, so are we, even if our mutated cancer cells don’t make us invisible or allow us to fly. How about the C-Men? Err, no…maybe not…
When I wrote my first article on my experience with cancer, ‘Skyfall‘, I was conscious that much of the Facebook generation is happy to sit through fifteen minute videos of cats falling off various objects, but many seem to struggle with more than one paragraph of text. I was only recently introduced to the web abbreviation TLDR (Too Long, Didn’t Read) and with that in mind, cramming all the relevant, interesting or important information into an article that people would actually be willing to read was going to be a challenge, so even after seven and a half thousand words, I still felt there were holes in the story.
The Bond theme that runs through that article should tell you I’m something of a film buff, and there are certain rules in the world of modern superhero film franchises. Due to the new audience who will have never read the comics, there needs to be an ‘origin’ chapter of the story. How Wolverine got his adamantium claws, Peter Parker’s arachnoid metamorphosis after being bitten by a radioactive spider, or Bruce Banner turning into the Incredible Hulk after accidental exposure to gamma radiation and a traffic warden. So I guess you are wondering how I got my powers?
The Origin of the Specious
Imagine if you will the screen in front of you wobbling in heat haze waves and transporting you back in time to 1978. James Callaghan is leader of our Labour Government, the songs of Grease are dominating the charts, the World Cup is being hosted and won by Argentina, the Yorkshire Ripper is terrorising the country, and I and have a bowl haircut.
I am sitting silently at a dinner table on my own, in front of a plate of stone cold fish cakes. The table is in a living room that seems to my six year old sensibilities to be vast, but in retrospect is probably the size of a prison cell. My dad is sitting across the room in a chair, he might be watching our black and white TV. I’m too busy sulking to notice. Next to him my six month old brother is in some bouncing receptacle designed to prevent his escape while his parents do something more important or less boring.
Next to me in the partition wall is the shuttered hatch to a galley kitchen that’s size, consistent with the rest of the accommodation, demands the suffix -ette. It doesn’t even have a door. My Irish mother is berating me through the void. She is exasperated at the capricious nature of children’s gustatory predilections. She’s right. I am being a little shit.
“I hate fish cakes!” I eloquently yell as I sit obstinately at the table, cutlery down, arms crossed, and bottom lip jutting out like an inflatable diving board.
“You love fish cakes!” She parries brilliantly but loudly, and then ripostes, “Or you bloody did last week!”
Across from me is the door to the only other room in our flat, the single bedroom that I share with these three I call my family. We have lived here since I can remember. The flat is part of a dissected Edwardian house just off Ealing Common in London. We live in a first floor flat and share a bathroom and toilet at the top of the stairs with the other tenants of the house. The landlord, Mick Devan (my mother’s accent means I think his name is Mick ‘The Van’) lives downstairs. What we or he don’t know here in 1978 is that the immigrant diaspora of the world housed in these poorly maintained buildings will be persona non grata around these parts in thirty years, as these beautiful old houses will be gutted and restored, period features and all, before being returned to the millionaire middle class and aspirational parvenus of West London.
When I say poorly maintained, the specific and relevant issue in this tale is the strange bulge in the ceiling directly over my head. A plaster bulge that has been swelling like an unlanced boil for some weeks. ‘The Van’ hasn’t done anything to sort this out despite several complaints from my parents .
“Oh go on then! GO!” Mum capitulates. I knew it; a six year old has a lot less to be getting on with than a mother. I can sit here all day. She’d give in eventually. I triumphantly rise from my chair and stride obnoxiously across the room to join my fellow male Martins.
What’s that creaking noise? It doesn’t sound like mum pulling her hair out. It sounds like…like..
“GET OUT!” Dad screams as he runs from his chair grabbing my baby brother and me. This is all very confusing. The next thing I know I am standing with my family in the corridor outside the flat. From inside there is an almighty crashing. I didn’t know noise got so loud.
Once the cacophony has subsided, my dad nervously pushes the door open to reveal the structural carnage inside. What had been our home is a rubble filled dust storm, and the chair in which I sat only seconds ago is now buried under what was the contents of the attic above. Oh sugar. That was really close.
I know what you’re thinking as you sit in your comfortable 2014 chair. Speak to the freeholder, get in touch with the insurance people, get your family into a hotel, and make sure that slumlord covers your bills until he returns your home and property to it’s original state. But it’s not 2014, it’s 1978 and The Winter of Discontent, the world doesn’t work like that, people are wearing brown corduroy flares by choice for goodness sake. We report the destruction to ‘The Van’, but are left with no choice but to clean up as best we can and live in what looks like The Blitz for a month while repairs are made around us.
What we and the average man in the street are unaware of in 1978 is that the wonder material asbestos, used as insulation in homes, schools, and hospitals all over the country for the last century is bad for you. Really bad. Sure there has been medical evidence supporting this for some decades now, but nothing conclusive enough to force the banning of it. That’s not going to start happening for seven years, and another twenty one years for the white type.
There is little doubt that the next fortnight living in a confined space filled with dust is exposing us to health damaging particles, and it is likely that these include asbestos. It is during this time I suppose I inhale tiny fibres of super sharp silicate that work their way like parasitic worms down the bronchioles and alveoli of my lungs, and pierce like needles into the pleura. There they sit like quantum timebombs until one day thirty years from now the deadly payload will trigger a random biological mutation in the surrounding cells and a superhero will be born!
The wavy haze returns, blurring the past and we find ourselves back in present day, a time when the list of things that cause cancer is as long as the list of things that prevent it, and confusingly they include most of the same things. To be completely clear though, there is no way of knowing for certain that this single incident was the cause of my current situation. It is unproven speculation, but there are no other events that appear more likely, and besides it makes for a good plot device.
Since my diagnosis, the other members of my family have been tested to see if there are any indicators of mesothelioma and have proved negative, or decided that they’d rather not know.
You may think my claims to be a superhero are an exaggeration, but I know it must be true because one morning a few months after my diagnosis I opened up my laptop to check my Facebook account and found a wonderfully kind and articulate personal message from a genuine supervillain (or at least the actor who plays him), who it turns out is a friend of a very discreet friend.
The Philosopher’s Stoned
As mentioned, one source of my powers is my medication. These compounds have imbued me with physical energy and mental focus, and constant level of of analgesia that makes me conveniently impervious to stubbed toe pain. It is a strange parallel that runs along side a terminal illness that there is a tacit and complete acceptance of addiction to prescription drugs.
I know when it is time to take my next lot of painkillers, not just because I start to feel the ache in my chest more, but because I start to feel generally a bit crappy. My body is demanding its next hit. But nobody cares, let’s face it, what’s the worst that can happen? However, I need to know I’m only taking them because I physically need them. I am taking them because I need to check the oncoming ramp of pain, not because morphine makes you feel warm and fuzzy. I am taking the diazepam for the muscle relaxant effects, not because it numbs your brain. When your body is no longer of much use, the only thing left is your mind and you want to keep it sharp and engage mentally in life as much as possible, not waste what time you have wallowing in a dribbled pool of lobotomised self pity.
The funny thing is that if you had offered me those drugs in my twenties without the justification of a tumour, I would have happily given them a go. When you have to take them and the side effects start interfering with your day to day life, suddenly it’s not a very interesting or enticing prospect. The fatigue that comes from your illness is only increased when loading up on extra painkillers. The resultant drowsiness means I pretty much don’t drive anymore and am reliant on other people to help me get around. I even got rid of my car as I was using it so rarely the battery was flat every time I tried to start it.
The steroids counteract the fatigue and tiredness and it is a constant balancing act with the other medication. They override my body’s complaints and make me feel hugely energised. The laws of physics though, specifically the conservation of energy, tells us that this energy needs to come from somewhere, be fuelled by something tangible, like…cake, or chocolate, or pizza, or cake. Did I mention cake? Steroids not only help to inflate you anyway, they have also given me a bizarre almost bulimic compulsion to gorge myself at times. A compulsion that makes me think that I may have underestimated the psychological drive behind some eating disorders.
While I was never a professional athlete, and despite my comically exploding knee that gives way at the very thought of sport, I used to consider myself to be relatively fit. I turned my garage into a mini gym with a rowing machine and weights bench. At least three nights a week I’d whack on some Suicidal Tendencies or similar eighties thrash crossover, and ignore my complaining middle aged body as I put it through its paces. It was partly due to enjoying the endorphin kick of pushing yourself too far, but also because I’m secretly as vain as everybody else and didn’t like the idea of evolving into Jeremy Clarkson. Since my operation and diagnosis two years ago, I have used this equipment precisely once, during my denial phase.
As my gorging increases and my exercise decreases, the inevitable weight builds and I start looking more like a naked Homer (not the Greek one, or maybe him too, I don’t know what he looked like). Again, you may reasonably ask, “So what? This is the last time in your life you should be worrying about shit like cholesterol!” But think about it, there’s a part of me that hopes I don’t live too long after all. Can you imagine after giving up worrying about my fitness, and enjoying the best epicurean delights life can offer, that I should end up surviving the cancer and dying of a heart attack. Or worse still, to have eaten myself into a Channel 5 documentary size and be too fat to get out of the way of that oncoming bus. If the fifteen tonnes of double decker didn’t kill me, the irony would.
The Gruff Fellow
Since starting the steroid course, the improvement in my quality of life can’t be overstated and with all this new found motivation and the need to fuel it, I got together with some of my friends again for lunches, dinners, or whatever a terminally ill man can sponge from his mates (as long as it ends with cake. Note, that I even used the word sponge). In each of these feedings, er…meetings, at some point, I relayed the same small sentence. And in each case, my human polygraph powers allowed me to perceive an involuntary reaction to this remark. It appeared to cause genuine surprise, if not outright shock. The statement is a simple but profound one. “I am the happiest I have ever been in my life right now.”
I know it’s counterintuitive, but what it means is that with the help of the NHS, several charities and many friends and family, I am in the fortunate position of having been able to truly take stock of my life, identify the things I didn’t like, and do something about it. Some would hear this and think, “Bless, he should go back to bed now and wait for that medication to ease off.” Or think, “Oh, he’s kinda talking about bucket lists and such isn’t he?”
Well, that’s kind of what I mean. I think there was a lot of expectation that I would want to take up skydiving, or go see the Northern Lights or something (and yes, I considered those things, but you know, whatever…), but more importantly what I realised is how deeply fortunate I am, and have been, throughout my everyday and relatively unadventurous life. You might argue this demonstrates a profound lack of ambition and imagination of course, but the truth is every day I spend with my wife and children is another tick on my bucket list. How fortunate, or dull, does someone have to be to say that their life is their bucket list, but I am doing it every day.
Back before, when life was complicated and I wasn’t terminally ill, like many working parents I saw very little of my children during the week. Five minutes in the morning before I drove to work and fifteen minutes of reading or bathing before bed each night. When the weekend came this was the only time to do those things we all need to do to keep the world turning. Shopping needed buying, grass needed mowing, rooms needed decorating. The last thing I needed was a wife and two young children demanding my time as well. There were moments I genuinely resented them. I don’t need to testify; life is hard sometimes, and the constant repetition or pressure to meet expectations leads to a lot of stress and tiredness. Who do we take that out on? The people that are not only on hand, but who are most likely to tolerate our rancour. It doesn’t take a bird’s eye perspective from cancer mountain, to see how undesirable and depressing that outlook on life was.
As a philosophy, I may reflect fondly on the past and I can look forward to positive things in the future, but it is only the in present that I can actually be happy. The right here and now. How do I feel this minute? And despite my less than promising future, what I have right now is a precious and rare commodity; I have time. I have the time to clean the house, get some shopping, learn to play the guitar, write mammoth internet articles, and most importantly spend time with my wife and children because I can and because I want to. It works both ways too, the children especially have responded brilliantly. They are still at that age where their parents are their greatest heroes and there is no greater present that you can give them than your attention (okay, after a Lego Death Star). How many dads get to share these formative years with their kids? It has really reinforced for me the terribly trite tenet, ‘You get out of life what you put in’, and while it certainly felt like I was putting a lot in previously, a time and motion audit shows that it was pretty inefficient and a there was a critical misdirection of resources. I was creating a lot of heat, but not much light.
Having made my declaration of happiness and receiving this reaction from people who are close to me and pretty well informed, it occurred to me that there must be many others out there who presume similarly. That my family and I are living through a tragedy and we must be very sad. I’m certainly not in denial and I’m not going to say there hasn’t been some dark times, but I also am working on spending the rest of my life, however long that might yet be, living, not concentrating on dying.
That said, there are some bizarre intermittent doubts and feelings that have to be subdued. On the rare occasions I have shared these, they are universally met with contorted faces that transcend confusion. For example, my original prognosis, (and I understand that that does not mean prediction) was a year. Clearly I am very pleased to be still here twenty five months later, but I’ve always valued punctuality in a person and hate tardiness on principle! Friends, family and colleagues have prepared for my demise with this timeframe in mind there is a certain embarrassment that after people have gone through those mental and emotional preparations, that you have, well, ‘let them down’. Also because those outside your family or health professional circles generally only see you during your good phases, there is a tendency for them to overestimate your health, and it feels a bit like your boss has caught you throwing a sickie.
On more serious notes there are significant financial implications for my family depending on when I die, along with the research that suggests children cope better with parental loss the earlier it occurs, so there is a part of me that thinks in some respects it would be better for them if I met my expiry date, or get a move on at least.
I’m sure these confessions have had the same unfortunate effect upon your countenance as they have my dining partners. You can relax your twisted features now. I know that there is no expectation for me to do anything other than to be myself and to die whenever the time comes, hopefully as far in the future as possible and with a bit of dignity. In the meantime, and despite these minor aberrations in attitude let me assure you that I am in an extremely positive place psychologically and enjoying my life and family hugely at the moment.
As one would expect, when I was given my prognosis January 2012 it was a huge wake up call. As I sat in my hospital bed I apologised to my wife for my selfishness, the wasting of time, for taking her and everything in my life for granted. It was going to change from that day on, I would be a person I could be proud of. Knowing that on my final day as I shut the door behind me, I could look back on a life with regrets yes, but also reparations.
For the next six weeks it was hard to do much of anything as I recuperated from my operation, but once I was fit and essentially healthy again I reorientated my priorities at home, reconnected with my family, but also went on a bit of a social blowout, a kind of final farewell tour. I drank and ate like there was no tomorrow simply because there might not be. This carried on until the five months of chemotherapy that essentially took me off the planet. After that I had another few months of good health before a swift and deep drop in my condition. Suddenly I had no energy and was in bed eighteen hours a day. I genuinely thought, this is it, the beginning of the end. Start putting your mental affairs in order. As it turns out the steroids brought me back from the brink, but it also made me realise with utter shock, I had slowly sleepwalked into taking life for granted again, or at least acting it out so. I was so angry with myself. How could I let myself get into that situation? Me, of all people?
There is a desire to follow a natural logic that my health will decrease at a predictable pace. I draw a point on a graph two years ago, I plot my health now and draw a straight line until I cross my mortal X axis. But I know that is not necessarily true or even likely; I won’t die by inches. 90% of all deaths by cancer are from metastasises or secondary cancers. What is more likely is that one day a little piece of that mesothelioma will break off and go for a joyride around my body until it likes the look of some particular spot, like my brain or bones. It will take up residence in that less tolerant part of my anatomy and it will quickly cause my death. The other option is pneumonia because my lungs aren’t strong enough to fight a bad infection. Either way, I cannot sit around assuming that because I am feeling okay today, that will follow tomorrow .
After this experience, I gave myself a massive mental slap in the face, and reinvigorated with my new chemically assisted energy, I vowed to throw myself into the one thing that matters more than anything, my family, and to remember that tomorrow I might not be able to.
It’s not just me though, this awareness has to be held holy by my wife too. The rare times we have found ourselves arguing in the last two years have generally been when there has been a downturn in my health that leads to changes in our routine, one that gets taken for granted. The arguments aren’t about the fact she hasn’t done the washing up (despite superpower No.4), they are because she worries I can’t, and that frightens her.
When I first heard my prognosis and had time to at least chew on it, if not digest it, my first thought was to start building a library of messages for my children for the future: letters, videos and such. Sadly, I know that when I try to recall my early childhood there are only islands of memory in a vast ocean of fog. I don’t expect them to have too many direct and vivid recollections of me at the age they are now, so it seems the logical thing to do doesn’t it? Many people assume this is the case and ask me how it is going. The truth is I haven’t written a thing in two years. I did sit down on a couple of occasions early on with pen in hand and stared at a blank piece of paper, but that was as far as it got. Was it laziness, complacency, fear, writer’s block? Maybe, I can’t say for certain. But consciously I have concluded it’s all a bit pointless. What would I say? “Be good for your mum, work hard at school, treat people as you would want others to treat you, with respect and kindness.” There will be plenty of people throughout their lives telling them all these things already; mum, grandparents, influential teachers. Anyway, if my children end up anything like me, when did I ever do something because I was told to? You could guarantee I’d go out of my way to do the opposite. A far better legacy is for me to demonstrate to my children a role model they will look back on with pride. To show them not just through my words, but by example, a character they might aspire to. I mean, how hard could that be?
Many people have been affected by the loss of a parent to cancer or other illness, and the one that has always lingered in my memory, was a friend’s mother who died after several bouts of breast cancer when he was a teenager. In the time between her initial diagnosis and her death, and despite the bleak outlook and contemporaneous effects of both ailment and treatment, she decided to go back to education to get a degree. It wasn’t about preparing herself for a career, it was about living in the now and achieving her unrealised ambitions. I was always struck by how proud my friend was, and how her legend had become part of his character, and now by osmosis, part of mine.
For me though, it hasn’t been going back to school, it has been creating a website to record my experiences and thoughts (that will hopefully include something useful), and learning to play the guitar. I know I don’t have time to finish these to my satisfaction or master. I’ll never flawlessly deliver Clapton’s Crossroads, and to be honest at this rate I’d be ecstatic to flawlessly play Mary had a Little Lamb, but for the first time in my life it’s not about striving towards a destination, it’s about the journey. It’s about saying, “Yes the world may stop turning tomorrow; and it may not. In the meantime let’s bloody get on with whatever I have been procrastinating about.”
I don’t know who my little boy and girl will be when they become adults. No doubt their course will be altered by my absence, and that only makes any kind of prediction even more pointless. It would be like writing to two strangers of whom I know the names and sex, but little else. Do I write a letter to my daughter for her wedding day only for her to decide she doesn’t want to get married, or to my son for the day he becomes a father himself, but he can’t have children?
My website and my Facebook account are the unconscious letters written to my children. The pictures and videos of us playing and enjoying life together are the instruction manuals to parenthood. These things will show them who I am, what I think, what values I have, and my lonely sense of humour. The last thing I want is to haunt my children with overearnest pontification from beyond the grave. Of course the irony is one day their eyes will pass over these words for the first time. I guess I should wave.
As an atheist I’m not counting on a celestial afterlife to sit observing them from, and based on what I was like as a teenager I’m not sure I would want to be an uncensored spectator to that anyway! The only afterlife I will enjoy the second the last neuron pumps its final ion, will be in the words, pictures, and objects I leave behind, and in the memories and stories of those that knew me.
There will be times in their lives when those that knew me well will translate through time for me. My wife will tell them how proud I would be of them when they show compassion or challenge ignorance, when they persevere in the face of failure, or when they put the interests of others above their own. These personal reflections will be far more valuable in context than some abstract oratory from the past that may never achieve relevance.
For Whom the Belt Holds
One benefit of leaving before last orders is that the kids won’t have the reality of an annoying middle aged man to embarrass them daily during their teenage years, and no doubt, the greatest relief of all will be that they won’t remember the last days of their father’s life as he strode through the local streets wearing a stupid medicated grin and indoor clothes with Y-fronts on the outside. In the meantime though, the good people of Harpenden can feel safe in the knowledge they are now under the protection of A-Man (with cancer). Although generally only when the weather is nice and I’m having a good day. Also, I can’t promise to have the same effect on the local female population as Henry Cavill, unless you have a penchant for pendulous pot bellies over perfect pectorals. If there are any prospective supervillains out there who are missing a heroic adversary to keep them in check, please leave your application in the comments section. Please be aware though, no running or unnecessary physical activity. In fact, if we could just keep it to arguing the toss about football in the pub, that works for me.
Oh and lest I forget and waste this opportunity to use one of my powers, “Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering.” (Thank you my little green friend, where would I be without your little nuggets of wisdom?)