3rd June 2018

We’re social creatures. We survived and evolved by being tribal, working together, finding safety in numbers and hunting success in packs. We’re meant to be together. It’s in our DNA. We yearn for companionship. We yearn to belong, even when we want to be left alone. Sometimes, we’ll go and sit in a bar or a café, not wanting to meet anyone or converse, but just to absorb a little human radiation, soak up that vital energy of the tribe. We might sit in a park and just enjoy watching others walk by. Who doesn’t enjoy a coffee alone in a crowded café? Train stations are good too aren’t they? Sometimes we might go for a walk in a graveyard, just to feel closer to those who have tread before us and absorb something of their experience. I used to enjoy walking the grand dilapidation of Glasgow’s Necropolis, not unlike Alasdair Grey’s Lanark. It makes sense that it stands in his novel as the centre of all power. Knowledge is power, and all those beneath the soil have first hand knowledge of the one thing none of us up here can know anything about. A cemetery is power base because tall the residents are steeped in knowledge, they know death intimately. Perhaps just by being close to them, I can absorb some of that knowledge as it radiates up through the grass, get a preview, some advanced wisdom? A trailer for what lies ahead? [in your best Don LaFontaine] “Coming this winter….”. Absorb it all.

I’ve been lucky, my treatment has only been surgery and chemotherapy, but I still elect to undergo this particular kind of radiation therapy voluntarily.

Absorb the radiation of knowledge; absorb joy, kindness, happiness, love. We’ve got a family wedding to go to this November and I’m already dusting down the kilt. Let’s face it, any excuse – weddings, Hogmanay, Burns Suppers, football games, it gets plenty of wear, and who doesn’t enjoy a nice breeze up them on a warm day? Polish the Gillies Brogues, dig out the flashes, straighten the sporran, fill the hipflask, sharpen the knife. Wait, what?

I should explain. An important element of the traditional Scottish male wedding guest’s ensemble includes a partially concealed blade, the Skean Dhu. There’s a striking honesty about this tradition. In times past, we would leave the heavy weaponry outside our host’s door as a gesture of goodwill, but we’d be sure to let them see the hint of a hilt hidden in our sock. It’s a polite way of letting you know – we honestly didn’t come to make trouble, but that doesn’t mean you get a free pass to be a dick. If you get arsey with us we’ll have to have a frank and fearless discussion about your behaviour. With a knife.

The hidden dirk is an essential accessory, even if you only have the bejeweled hilt attached to a costume blade. Mine is real, before you ask, so just mind your fingers if you go poking about down there. I’m never quite sure of the laws around wearing the Skean Dhu in Australia, but I’m not going to be dropping from it from my wedding day attire any time soon. Should I be challenged by the local constabulary, I think the argument is that it’s part if traditional costume and as such it’s deliberately obscured from view so as not to present a threat. It’s not like I’m waving it around, quite the opposite in fact. I’ll keep it hidden, that’s the point. I came to have a good time. We’re social creatures. We’re social creatures that just happen to bring knives to weddings.

I think I must be seeing that the end of all this is now in sight. I’m getting excited about future plans. I can see a horizon past the chemo. This wedding is something to hold onto. There is love and life beyond all this nerve damage and poison and fatigue. Just hold on a bit longer, sunnier days will come. Summer weddings will come in Jervis Bay. I love a wedding when we all arrive in our clan colours. We have our separate identities but share a common visual language of negotiating our way through. We’re different clans, but one big tribe. We go through lots of tribes in our lives. We have different circles of friends. School friends, footy friends, work friends, music friends, pub friends. We wear different clan colours and different faces for different friends and different events. We can make chapters of our lives according to the tribes we belonged to at different ages.

 I used to wear the uniform of white basketball boots, skinny jeans, metal t-shirt and black leather biker jacket. A few patches here and there. The metal kids were my tribe through the teenage neurasthenia. Ironically we thought we were being alternative but we all looked identical. The point was to belong, to wear your colours. We stood apart from the neds and the goths and the indie kids who were all our sworn enemies, except that we weren’t enemies at all and shared the bars, dancefloors and bodily fluids at Wypers, The Venue or The Tech. Door security was in on the ruse and was always ready to kick open the fire exits if the cops showed up looking for underagers. Teenage kicks indeed. Hard to beat.

Belonging to a tribe sometimes required more than the right clothes, there were initiation rites. Stagediving was one. A cigarette or two. Shoplifting another. I wasn’t great at this, but even then I still approached it with some kind of ethics. When it was my time to prove myself, I sneaked a Nestlé’s Kit Kat up my sleeve in RS McColl’s. If I had to steal I was going to make sure the most evil company on the planet took the hit. It was a terrifying experience. Survey the rows of chocolate bars, wait 'til it feels you’re your unobserved, casually brush your hand along the wares and flick one up inside your sleeve. Christ, it’s got stuck on my hoodie sleeve. Do I abort? Palpitations like a heart attack. I use my free hand to nudge the kit-kat up. Why did I pick something that has four chocolate fingers? Four! Four fuck sake. 8cmx6cmx1cm.What a wideo! Now the escape. Walk past the till. Were you spotted? Was Door Security following you, they’re not so friendly here. Would someone else dob you in? My chocolate skean duh was hidden up my sleeve, one finger curled up inside to secure it in place. It’s not very secure. Don’t fall out, don’t fall out! Don’t breathe. If you exhale your breath will rise up in neon lit clouds that spell G-U-I-L-T-Y, and they will follow you around, hovering just over your head. Your whole life hangs on this moment. If it goes wrong it’s police, prosecution and children’s panels. No one will give you the benefit of the doubt ever again. Within the week you’ll be a crack whore in a basement squat. Your whole future will be dictated by the net few seconds. I didn’t feel safe ‘til I had made it up the road and was amongst my tribe again. I disappeared into the mass of black leather hides, protected and safe in my herd.

That wasn’t the full extent of my criminal career. The final test was to pilfer a record. A 12” vinyl is no Kit Kat. This required some planning. I bought a record first, and then used the bag that already held the shape of record sleeve to collect the targeted one. The one I purloined is the only Slayer record I don’t really listen to. 30 years later, it’s still too heavy to deal with man.

The weight of guilt doesn’t erode over time, but I’ve been employing some mindfulness techniques recently to nullify the stresses of the past. It’s important not to dwell on past mistakes to the point that you forget to experience life as it happens now. It’s just as important not to worry about the future. That’s particularly difficult for me; Jesus Christ, of course I worry about the future. I don’t know how much of a future I have. But then, neither do you. This is the horror of being alive and sentient. We live in constant stress by living in fear of our past and our future. What if I had done this? What if this happens? What will I do if this goes wrong? This isn’t life; it’s only the fictions you invent in your own head, whilst real life passes you by unnoticed. It would be easy to live your whole life inside you head and forget to smell the air outside. You might as well be in a coffin for all the attention you’re paying to the world outside. Find a way back to the present moment and the stress disappears. There’s only now, this moment, here, now. True, the present is not much fun if you think you’re experiencing another stroke, but on the whole it’s a useful technique to reduce stress. I use touch to bring me back to reality. A tactile moment with a piece of cloth, the finger over the cabin in the car, even the taste or texture of food can help bring the focus to the here and now. If you see me stroking my trousers whilst staring off into space, don’t freak out, I’m just I’m time travelling.

I have much to atone for, but the pettiness of my crimes and the time that has since passed disqualifies them from any sanction beyond what I impose myself. We make our own prisons in our heads. I can only submit myself to the judgment of my peers for my past mistakes; there is no judgment from anyone higher. No hell awaits other than the ones we construct for ourselves. I can but make amends for my mistakes and then hopefully leave them behind forever. The past is the past and that’s where it needs to stay. When I’m next in Glasgow I might ‘accidentally’ leave my change at that particular RS McColls, if it still exists, pay them back. Nothing for Nestle though, they can still go fuck themselves. I’ve also paid for every Slayer record since wayyy back when, whilst other bands I listen to are more likely to have their output ‘borrowed’ from the web. Slayer have probably done quite well out for me over the years, all things considered. That takes care of the past. I’ll try not to dwell on the future passively either. I’ll engage with it in the here and now so it doesn’t consume me. I’ll be prepared as best I can. I’ll exercise, I’ll write, I’ll see friends, I’ll love my family. I’ll try and live well. I’ll nurture my tribe. I have to schedule ‘sleep days’ now so that I have enough energy for my tribe when they need me. The Peter Carey Writing Awards are coming up and I’m really hopeful for Casper’s entry (we’ve had a bit of a tip off). It’s a big day for us. I want to be there for him. I may need to schedule two sleep days in preparation for the ceremony, since I doubt I’ll sleep much with all the excitement. Any preparations made whilst undergoing chemo just takes a bit more planning. You have to prep for your future prepping. It’s all part of the cycle.

Tribes are important, but caution needs to be exercised too. Disappointingly we’ve got a bit too tribal recently and seem to have fallen into camps where we can’t seem to meet in the middle. We’ve become stubbornly partisan. I’m guilty of it too, probably. I have no time for you if you’re a Tory voter (read Conservatives (UK), Liberals (AUS) or Republican (USA) because your ideology of market solutions and trickle down economics does not work, and actually we do need Governments to intervene and steer our economies to low carbon technologies, accessible healthcare and living wages that benefit us all and not just shareholders. But to keep the dollars rolling in for the big oil companies and health insurers, the Neo-Cons have all had to pull off a trick that has had devastating consequences across the board. They’ve had to make us doubt evidence.

The Brexiteers of the UK made it popular to distrust experts. It was their whole campaign. Anyone with a relevant degree became ‘the elite’, even whilst those casting these aspersions generally held hereditary titles. In Australia we won’t listen to experts about teen suicide so we largely abandoned the Safe Schools program, kowtowing to uninformed prejudice instead. In America, Republicans shut down NASA’s environmental research and won’t even let the CDC collect stats on gun violence despite its epidemic proportions. The right wing has done away with evidence and is appealing to our most base emotions.  Suddenly we have large swathes of the community stubbornly refusing to trust what the scientists are uniformly telling us. Science is the enemy. Somehow it’s become safe to say in public that you believe every single scientist, academic or expert across the globe is working to up end society. And you know what it’s true; they are trying to change society. For the better. Let’s just stop calling them the conspirators.

Science is losing. Last year we had a devastating flu nearly bring us to a standstill. We need everyone who can be to be vaccinated to protect those, like me, who are compromised and can’t get the shot, but the anti science right wingers have made so many people fearful about vaccinations, despite the kazillions of pages of peer-reviewed research and evidence showing them to be safe. We’re seeing diseases return that we thought we had eliminated a century ago. Distrust is sown at the top. When was the last time you heard a politician with a portfolio say that we need to trust our scientists, that we need to let them inform our policy?

Last year, a young father in the next village over died from the flu. I feel so awful for his family. It is on all of us to protect the tribe. Depressingly the uptake of the flu vaccine has been so low in recent times, that this year, given the virulence of last year’s outbreak, we don’t have enough stocks to cover people coming back to science and herd immunity. Stocks are so low that we now have to limit jabs to those most at risk. My employer normally provides vaccinations for it’s 1500 staff. Not this year. The offer was made and then rescinded when it became evident that there wasn’t enough to go around. We’re potentially walking into a public health disaster. It defeats the entire point of herd immunity. We’ve shot ourselves in the foot and I squarely blame the conservatives and their campaigns against experts. We’re all idiots now.

Herd immunity however is about more than just getting your shots, it’s about behavior. I was at recent public health event, and at the end of the forum, another attendee came up to me, introduced themself and extended a friendly hand. I greeted it with a firm handshake and said ’Hi, how are you doing?’ They replied that they were nursing the most awful flu. Suddenly, their hand felt very, very clammy. I withdrew my hand and stepped back, politely explaining that I have a compromised immune system. I quickly, impolitely, removed myself from their company. I kept my hand away from my face, turned on my heels with bit of speed and found a nearby washroom where I spent half an hour washing my hands, before returning to my car where I had some anti bacterial hand wash in the glovebox. I poured all of it over my head and stood there in the car park of Eagle Stadium like a green gelatinous blob, a giant lime jelly baby. The main danger now was not being eaten by Tom Baker. I hid in the trees until I was dry and sure the coast was clear. It was dark by the time it had all been absorbed and I could emerge and go on my way. Home and dry.

 This little incident prompted me to take a little action. I designed and printed a couple of versions of the hat you can see in the accompanying photograph. The text on the hat, for clarification, says “Immunosuppressed”. I’m not going to expect our social conventions to change anytime soon, people will stick shake hands, hug or kiss as a greeting. But for a while, I won’t.  By wearing these hats I can at least provide a bit of context as to why I’m moving seat away from you, refusing your hand, or holding my breath in your presence. Your illness isn’t just an inconvenience to me, it’s really really dangerous. I don’t want to have to explain myself every time though, hence the hat. Read it, don’t take offence, and don’t offer me your hand. That is all.

I don’t want to get sicker. I can’t get sicker! I’ve got enough drugs to take as it is. Beyond the chemo drugs themselves, I take a fish oil and glucostomine for my arthritic knee, a magnesium supplement to stop my hands locking, aspirin to keep stroke at bay, a mild statin so I don’t have breakaway cholesterol, Xarelto to thin the platelets and break down the clots in my arm, Dexmethsone to counter the chemo nausea, Ondansetron to do fuck knows what… I just trust the experts when they say I need to have it. I spend half my life renewing scripts and hanging around pharmacies.

There’s a standard 20mins wait on a script. I never know where to stand when I wait. I’ll meander the aisles, but then, I’ll feel self-conscious wherever I stand. It’s not so much myself I’m embarrassed, but for anyone else I’m blocking from doing some discreet shopping. Pharmacies are places where we just want to let everyone get one with their business unimpaired. So, as a consequence, I start to look shifty, pretending I’m not really looking at the packages around me, nonchalantly whistling, shifting from one foot to the other. I’d look at the supplements, but someone always wants to assist me there, and I’ve got nothing to say to them. My script’s ready. Thank God. Take it to the till, pay and be on my pay. Yes, I’ve got a loyalty card, of course I do. Paywave. Receipts in the bag. I’m through the gates and there’s hand on my shoulder. “Excuse me sir, can you just come back to the shop with me?” Fuck. What is it? I haven’t done anything wrong. Or have I. Did I have a moment? Did my normal logic centre shut down, did I momentarily, unconsciously switch over to irrational deathwish Bob. Fuck. Bet I did. There’s a cloud of letters forming above my head. I’m checking my sleeves for Kit Kats whilst the security guy goes through my bag and checks the receipt. Nothing out of order. Can I ask you to open your jacket Sir? Ahh, now we come to it. It’s my chemo diffuser bottle. I’ve got so used to wearing it that I’ve become blind to how others see it. That weird bump under my shirt is going to look like pilfered goods. I tell the guard he has my permission to search me. He reaches for the bottle under my shirt. Careful I say. That’s my Skean Dhu. What’s that he asks. It’s dangerous I say. A concealed weapon. You want to watch your fingers. I’m just saying. Let me show you carefully. The guard steps back, not sure where this is going. I pull open my shirt and reveal the bottle in its net bag suspended by a cord around my neck. Chemotherapy drugs mate. I’m cytotoxic. I wouldn’t get too close to me or that bottle. In fact. I’d go and wash your hands for about half an hour now. The guys face turns red with shame. It wasn't really necessary to shame him, but cancer just does that automatically. You cannot argue with the cancer card. It trumps everything. I have cancer, now off you fuck.  

The neuropathy has extended itself right along the length of my feet, spread from the tip of my nose across my cheeks, crept from fingertips to wrists. Fatigue is no longer so easy to predict, it comes whenever it wants. Nausea has become a thing. My blood won’t clot so when I sneeze I just fill the hankie with a splatter of red. Spasms afflict my hands and my face. This is the how I stand out from the crowd now.

I belong to many tribes, but I have new one now, and I will always be part of it. We don’t talk much, but we can identify each other in the street. We give ourselves away with silent clues. The puffy face, the swollen limbs, pustules, scars, the vacant expression, gloves in summer, the ill fitting wig or the headscarf that can only mean one thing. Look for us and you will see us move among the shadows at the edges. You used to see us at work, the pub or the gym, but then we disappeared. We just drifted out of your life. Where did we go? Think now and you will remember us. We never went anywhere. We are hidden in plain view. We are everywhere. We live among you. Look out for us, but do not offer a hand. We yearn for companionship; we yearn to belong, even when we just want to be left alone. We are the experts of this, if nothing else. Trust what we tell you. Sit with us and absorb our radiation. My name is Legion, for we are many. We know what hell awaits.

10. A Marked Man