the fear

Remember that hypothetical: Would you rather know how you’ll die or when?

I’d always felt that knowing when was the scarier option - you’ve spend the rest of your life counting down the days right? How could you enjoy sweet momes when you know it's a sweet mome closer to the end?

This was a lovely wee hypothetical brain exercise for me until I was diagnosed with stage four lung cancer at 30 and it will very likely kill me a lot sooner than I thought. Now I’m in the other category: I know how I’m going to die and guess what? Make sure you’re sitting down, because this will knock you off your socks: it fucking sucks just as much as knowing when!

You know the National Treasure movies where the guy who is a complete jerk comes good at the end and then sacrifices himself in a cave filling up with water so Nicolas Cage and Diane Kruger can escape and we see him slowly drown?  That's what it feels like knowing what's going to kill you sometimes without the feeling that you signed up for it because you’re not a hero you’re just a normal human girl who was minding her own business trying to get paid and work out who she is. You’re in a cave completely alone, watching the water rise, knowing everyone else is moving on without you. It is a truly horrible feeling.

More generally, talking about dying is v scary, no one likes it, v hard to talk about. Obvi with the last eighteen months we have been plunged like coffee grounds into the devils french press into a global situation that’s exposed us to more of it, and that can be distressing. Don't act like seeing the coffins, the death count, the endless black parade (of course emo is back given the circumstances?) has not affected you in some way. As if you have not thought about what would happen if you got the novel coronavirus and what would happen if you weren't a lucky one to escape unscathed.  Like many people in my situation, I too have been facing these fears on my ~journey~ and have a few thoughts re the whole thing. I thought I would share them to maybe make more sense of them in an attempt to inch closer to ‘acceptance’ but mostly, so that I won’t feel as alone in this and maybe if someone reading this is in a similar sitch, they won’t feel as alone either. 

Pre diagnosis I spent a fair bit of time thinking about my demise (unlike Bella Swan re the very first sentence in Twilight) my Dad has been sick since I was eight and I’ve watched him go from a strong able bodied man to a double amputee over the course of the last twenty plus years and he’s been hugely influential on my thinking about mortality without even realising. 

For example, the first time I had my heart broken, I came home beyond hysterical - Mum started yelling for Dad to come because I was simply too unhinged in my screaming for her to handle me unaided. He came into the front room where I was wailing, took in the scene and laughed at me. I was completely thrown and he said there was another, even bigger dickhead than Dylan (v sorry Dylan, Dad did not care for you) just waiting to break my heart so why be sad about this foolish guy? 

That was Dad’s attitude to everything: It’s only going to get worse, so you may as well enjoy whatever you’re in right now, even if it sucks. He never said this explicitly because I don’t think he has realised the modus operandi he expressed to us kids in everything he did, but to me, a sponge, this is what I absorbed. We are all marching towards the same end so why get upset about this minor thing? Keep it pumping queen!

At 20, this was like, revolutionary thinking. D U H of course we are all going to die! Of course we should seize the day and enjoy the hell of the now! Real woke shit Dad, very impressed, I’m off to smoke more durries.

Years passed, Dad got sicker and this attitude helped him but also hindered him in the sense he hasn’t dealt with anything that was happening to him emotionally - and he has trauma with a capital T. Watching this play out, a mere spectator in my fab Dads trauma, was not it. It made and continues to makes me feel helpless and useless as Dad spirals into a deep, bottomless depression he is reluctant to seek help for.

I used to think about death when I was alone, chain smoking at home after a run or late at night when I couldn’t sleep. Not actually dying but more that my actions (like smoking, binge drinking and doing drugs) would lead to a sooner death. But even then it was completely conceptual - I just assumed it would happen much much later.  I did have one moment on my couch watching Arrested Development (RIP Jessica!) and I realised that I wanted to be present when I die. I immediately rolled my eyes because OF COURSE I DO. OF COURSE I WANT TO BE PRESENT FOR A VERY SCARY THING. V typical me I will say (I am v big on ~being~ ~present~ for ~life~ ~experiences~ and am dev I won’t get to experience the hell of childbirth, but this body is now a condemned building so as if I’m going to put a wee little bb in there for nine months). 

Anywhoozle, I just continued my life, moving to Melbourne, meeting the love of my life (my v hot fiancé Mitch) vaguely aware that I wanted to be present when I die but dying was a very long way off and look at Dad! He is losing limbs and still smoking and drinking everyday and holding on to this mortal coil! Things are fine! Or at least! Fine enough! Focus on the right now! 

And then in late 2019, following nine months of horrible, constant back pain no-one would look in too,  I got diagnosed with stage four lung cancer (Adenocarcinoma if you wanna know the full tea) at 30 years of age about 3 weeks after my Dad had his second leg amputated.

Obviously much drama ensued - tests, scans, surgeries to get me ready for treatment. Many visitors and some heavy chemotherapy. It was go go go and all I could really do was hold on. The first wave of terror realising how much closer I was to dying, happened while watching The Crown with my Grandma Cass who had come down to support me through chemo (she too, has lung cancer) 

It was my second round of heavy chemo into my four planned rounds, and the cold hand of fear grabbed hold of my bowels, and shook me like a dog. I could barely breathe let alone alert Cass to the FREEZING realisation that I was VERY LIKELY TO DIE AND SOON. I was sweating, cold and hot and so scared I couldn’t speak or move my thinking outside the loop of YOU ARE GOING TO DIE. Eventually, I was able to push out of my frozen jaw to Cass ‘I think I am having a panic attack because I might die soon’ and she said ‘Yes yes, let's hit the stairs’ and took me outside and we walked up and down my apartment stairs in the afternoon sun, and she told me it was normal to think I might die, she had thought about it to once or twice, but not to waste my time thinking about it. Simply, do not engage with the fear. (I should point out Cass is literally the strongest woman I have met and appears to be able to just switch off unpleasant feelings, something that makes me suspect she is actually a robot). 

Right around the time I was having these very fun, wild bouts of terror, I had a dream. Let me tell you, it was the very worst and very best dream I have had in my life (outside of the time I dreamt I was made of hot dogs and swam in mustard and ate myself to death. I am sorry you now know this information) 

Anyway the dream: VERY symbolic, VERY woo woo, I took it to my therapist AND my kinesiologist and they both agreed: it was fucked. 

I was in my childhood bedroom (where else! Very predictable nightmare location! Have an original thought subconscious!) surrounded by people - the room was packed. People from work, family (my dead Aunts specifically) friends and lots of people I didn’t know but like, knew I ~knew~.  The vibe was merry, like a party but like a party for me and they were waiting for something to happen with baited breath. Everyone was looking at me, lying in my bed where I was hiding with the covers over my head. There were crystals in a grid underneath me, they were THROBBING with power (?) and in general, being menacing. The whole vibe was a huge happy party but as I said, I was terrified and not willing to engage. I was too scared to take the covers off because I knew whatever was going to happen would kick the fuck off the second I did. Everyone was encouraging me to pull the covers down and just do it already! Come on! Its going to be great! It kept building up until everyone was chanting JUST DO IT! DO IT! DO IT! I should mention this dream was sponsored by Nike. 

When I finally did lift the covers (petrified but forever a people pleaser) I went through a portal which was very like, spacey and portally, think a Treasure Planet and fern gully feel: lots of glowing oranges, deep purples and magnetic energy. 

I woke up on the ~other side~. It was a swampy forest - kind of like where Yoda lives and dies (how nice for him to pass at home, not common!) and then I woke up crying because I was so overwhelmed and convinced yet again, I would be dying imminently. 

The best thing about this dream is that my kinesiologist walked me through a meditation where I met my spirit guides (the people I ~knew~ but didn’t know in the dream). It helped me understand that my brain is trying to make sense of some complex feelings and thought about dying as an experience rather than a concept and being okay with letting my brain and heart deal with it however I can and to get into the practice of journaling so later I can understand the symbolism behind it all, like reading The Da Vinci Code but better because its about me and not Tom Hanks.  This dream had an extra benefit of getting over my deep  deep fear of ghosts - which I am very happy about because now I am only irrationally scared of cis white hetero men! 

My child therapist (Cate - she was part of my hospital's free support and was literally still studying her craft when we met. I had very little hopes in the beginning but she really turned it out, werk that puss diva!) offered some practical advice. We talked about my habit of suppressing emotions (*spoiler* this will be a recurring theme) I didn't want to deal with or deemed unhelpful and mapped my emotional process when I had intrusive thoughts about death and looked at the cycle I went through and talked about it - obvi its therapy. We worked out where we could put a ‘circuit breaker’ to stop the cycle of guilt/shame & fear I inevitably went through when these suppressed feelings popped up to change my thinking processes that aren’t helping me. She told me to ‘invite the feelings in’ rather than suppress them, the thought of which was unappealing.

Then in practice, it happened whilst watching a dumb movie with Mitch my v hot fiancé - I was yet again, gripped with the cold hand of fear, so I ‘invited it in’. It looked like a wee little dementor which floated into my head to watch the movie with us and that made me laugh because truly hasn’t bloody JK Rowling done a number on my generation??? This is peak dying millennial (great alternative name for this zine) but also, the feelings went away. 

Even now it's hard but when I can, it works and I can just keep motoring on with my shit movie/ chocolate binge/ whatever v cool thing I’m doing. 

Other times I think I’m so glad I’m in this situation, because I’m not wasting my life like a lot of people (me) my age (me, pre diagnosis) because (can’t stress enough how much this is me) they assume they have all the time in the world to do what they really want to do, or live how they really want to live but haven’t acted on it because its🗣not the right time okay!?

I have removed a lot barriers (working full time, gaining the clarity that comes with a terminal illness where you see all the bullshit around you and especially within you and getting access to the Cancer card*) to live the life I want. You would think this would set you free but I’ll tell you right now you still have to deal with yourself if you hope to gain mental freedom in a situation like this.

So what do you do, when you have nothing but time and you have a mostly managed ‘chronic health condition’ in a day to day context, but will eventually kill you a lot sooner than you thought? Let me tell you girlfriends: you compile a list of all the things you thought you would love to do or have a sneaking suspicion you are secretly v good at, if only you had the time and start putting your energy into and then realising:

a) you hate it (painting) or

b) it's not stimulating enough (painting and knitting) or 

c) its hella expensive to get into (pottery?! Ig has cat-fished women in my age group to fall in love with ceramics and pottery and cute vases but most importantly: with the idea that we too could be potters. Meanwhile it is AT LEAST a couple of hundred for like 2 classes? I blame social media, capitalism and again JK Rowling).  

But some things do stick: I still love writing and turns out I also love podcasting and talking to different people about ideas and experiences but damned if I didn’t ALREADY KNOW THAT INFORMATION BEFORE, BUT I DIGRESS. 

Mostly what I’ve learnt is that my relationships and being with the people I love and making sure they know I love them is the thing that gives me most joy and in the end will make me feel like I spent my time here how I wanted to.  Everything else is whatever, irrelevant.  I’m no longer frozen with fear, I know its coming one day and it’ll suck for everyone (especially me) but right now I’m working through fomo - I’ll miss the moments that happen in my family, friends and fiancé’s lives without me, the big news that happens in the world, my unanswered questions: do we fix climate change in time? Will Aliens make contact within my lifetime had I have lived to see it? and the memes! god damn it I’ll miss the memes.

But what does my changing relationship with death mean? Does it mean anything at all? Is it helpful or harmful to think about it the way I do? Again and I can not stress this enough: Does it mean anything at all?   

I feel like the fear of the unknown is a constant but the terror is normalised now. I know how to manage it slightly better (thank you therapy!) I’m not as irrationally scared of ghosts (thank you kinesiology!) and I have some specific ideas re how I want to die and how I would like to say goodbye.  Right now, I’m planning my teeny wedding for the end of the year and alongside the decisions on playlist, reception and ceremony, I can not stop thinking about how I might also like to say goodbye when the time comes. This is ‘inviting the feelings in’ and being productive which is my preferred way of managing grief. What better way to ease into the bottomless depression of dying than with the illusion you are in control of something? And as much as I love my supposed “loved” “ones” I simply can not rely on them to make decisions in my interests and taste when they are beside themselves with grief re my demise. 

I assume they will be inconsolable, barely able to speak through sobs, wailing and screaming like wild beasts, so thus, I must walk into the front room of our reckoning with death, take in the scene, laugh and remind them that death is just waiting around the corner for them too - so why be sad about this now? 

*The Cancer Card - the only thing going for this shit show - people are kinder to you, you get more presents on your birthday, suddenly your once secret dog is now a support dog and must be allowed into a Melbourne rental, and you can cut people who make your situation about them forever.