meaningfulness: or why i like fancy soda

i have been a bit… i’ve been struggling to know where to start with lately, not even remembering where i left off. it was my birthday. i broke out of hospital when i was anaemic because i wanted to go to a wedding and stay at a BnB in the middle of nowhere and i did both those things.  my birthday was good and i could barely eat my fancy meal but i had a mouthful of everything and it was all delicious and worth it. then my doctors told me, the next day, that my liver was failing.

it’s still failing, just a bit slower. it’s… holding its own. there’s no definitive way to work out  how or why without invasive tests that seem somewhat pointless about now if i’m taking a ‘less aggressive’ approach to disease progression – my only concession to this is being obstinate about taking the chemo tablets, even at sub clinical dosages, to try and do anything at all.  there is no definitive way to know what is happening in my body unless they try and work out if my bile ducts are being choked by tumours or lymph nodes or if my liver is just packing it in. there’s no way of knowing how to stop it. i am here, my body is here, i am in my body, and i am out of control of everything. i had fancy soda today. it was lemon, but there was this syrup with it. i added the syrup to the soda, and it went purple, even though the syrup was blue. it was real good.

and this leads into this strong sense of… intensity seems the wrong word, because i’m just repeating ‘strong’ again.  the possibility of moving to melbourne – one of the only things i wanted – is out of the question – the physical stress of moving may be too much (or may not be) – and i am tired a lot of the time. i don’t know if i’m tired because i am justifiably depressed though.

i worry about everyone around me. i want to make this ‘easier’ and i want to somehow leave meaning, some track, some trace, something for the people who have given me so much. and it is selfish because i want to survive.

because i don’t want to die.

i’m coming to feel like ‘mindfulness’ is bunk. i can sit here and observe the motion of the pleasure of eating a mandarine (i love mandarines more than almost any other food) and i can ‘exist in the moment’ at the push and pull of everything else in my head, as though ‘this moment’ is more authentic than all the moments that have lead to this one, or all the ones that will follow. or i can understand that all these moments exist, and i will feel things. ‘let the feelings wash over you’ ‘appreciate the way you feel when you just being’ is all good and well until you realise that your state of ‘not being’ is close.

and ‘not being’ is a solid thing, you know. i know i will live on, both here in writing, in memories, in the impact i have on people, but that isn’t alive. that’s not travelling to mongolia (i once almost randomly booked tickets to mongolia one day at work in 2011. with literally no cash other than my credit card. i wanted to go to a yurt. i am bipolar!).  it is not having a little goat farm in tasmania (i would be the shittest farmer) and it’s not living a life where for the last almost-two-years i’d been getting up and going to work and sharing my life with my partner as a human being rather than a dependent. i’d give up the fact that my words have now gone global for that, you know? i want that imaginary life.  i want to be alive.

i can’t donate my body to science.  the university in canberra that takes cadavers doesn’t, for some reason, accept GI cancer bodies.  maybe it’s not a research speciality. i thought about contacting them, or my liver surgeon – my liver is, of course, spectacular – but the idea of an eco burial in the new site in canberra appeals to me a lot. it’s a shroud in the ground with a tree over the top, and i feel blessed i get that option; no box or burning, just dirt.  and i am not blessed, and it is garbage to think of the options of my rotting body as a blessing, because i don’t want to die.

my own time post diagnosis has also been, compared to so much of what i’ve seen, effortless. i had support, an amazing medical team, a body that was robust enough to cope with an astoundingly large amount of treatment (i mean, i’ve seen people on message boards who’ve had 50-100 cycles of chemo, and god, i’m at almost 30 and that’s bad enough – but still, it’s a lot), and both income and medical insurance.  i have had limited side effects. i look, for all intents and purposes, still fairly normal, if a bit on the thin side and occasionally a slightly odd shade of yellow. i wonder if i should feel gratitude for this, this gratitude influx.

i was talking to my therapist (one i used to see years ago in brisbane, and who, for some reason, i just needed to talk about dying to – as though in some way our history would help me, and it has) about how hard things in our lives make us stronger and she told me to stop. and she said, ‘that is psychobabble.  it’s hard. it makes our lives harder. it hinders the things you want to do. it doesn’t make your life better.’  all of this: i haven’t grown because i have cancer. i am not now some stronger, better, braver, more courageous person because i’m waiting for my liver to fail.  i am sick, i am 32, i am going to die, i am going to miss out on living a longer, probably very normal and average (as well, most people’s are) life, where i do things and did things and make an impact on some people and fuck up other things.  what has this taught me? that i can have cancer? well done. slow clap.  shocking. yeah. we’ve all come on the journey. we’ve all seen what it looks like, and you know what, you’ll all get to see it again and again and again as, well, everyone dies.

for some people – and here, i talk mostly to the people who i know offline – this might be the first time they really see ‘death’ – the process of someone they know, their own age (ish) dying. the act and use of social media for me in this is tied into it. my twitter is private for personal reasons but i kept it open for years. my facebook is locked down mostly because, well, seriously, who has an open facebook these days, but i use it to communicate with groups of people. i guess a part of me wants to make it less shocking by sharing details.

i get trapped in creating meaning as well.  my incredible nurse care co-ordinator (when i get sicker, i’m listing all their names, but i still keep it confidential just because it seems weird to me to blog using their names, even though i know some of you read it, which is flattering) often has to just tell me that it’s ok if all i want to do is sit around and watch The Hunger Games movies or re-watch Star Trek, and that i don’t need to spend every moment engaging with the world.  she told me that watching The Hunger Games is meaningful because through doing this, i am taking my mind off things, or enjoying myself, or whatever it is we do when we watch trashy movies or TV that we like, and that this is ok. i don’t need to be in this mindful and meditative zone where all i do is feel profound about my observations about life and death.

because you know what they are? crying a lot. my observations are that i cry a lot because i don’t want to die.  i could make it more complicated, still, or use pretty words, or use some sort of amazing metaphor but it it’s all garbage because at the heart of it, i am 32 years old, and i don’t want to die.  i don’t want to be ‘dying’. i don’t want to be a patient who is no longer ‘curable’ and using terms like ‘life limiting disease’ because it lessens the blow of dying. but that is what it is.  it is staring at my hands typing this and knowing they will be white-washed bones by this time next year – or less than that, i don’t know that much about decomposition.  it is knowing that the slow decline i’ve written about before is here, that i am on that space, that i am in that space, and that i am starting to fade. and that it flickers up, and down and i have days where i feel completely normal, physically, other than a slightly odd niggle in my right ribcage, verses days of intense exhaustion. and pulling that out from depression is hard as well.

so i don’t think creating ‘meaning’ makes sense right now.  i’m going to do this thing where you sleep next to a bear at a zoo on friday. yeah, i know. zoos. i know this guys, they aren’t great. we’re planning a trip to tasmania. i am trying to plan past june. i am trying, trying, trying to have hope. i’m not hoping for a cure, i am hoping to just be alive, just that little bit longer. to have minimal fevers, minimal stoma garbage, minimal pain, minimal nausea, all that sort of stuff. i want to keep it under control, i want to live, i want to be alive, i want to be alive.

i don’t want to die.

About elizabeth

various things.
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22 Responses to meaningfulness: or why i like fancy soda

  1. S says:

    Magic purple soda!
    Sending you lots of love. xo

  2. Pingback: meaningfulness: or why i like fancy soda | I open my mouth and the words come out

  3. Shannon says:

    Your honesty is profound in of itself. I am so sorry for your condition. I am 27 and cannot imagine being in your shoes. Sometimes, when life gets hard, I say to myself “well it doesn’t really matter because we all die in the end anyway.” This comforts me. But what’s not comforting is leaving too soon.. I am so sorry. Your writing touches me.

  4. roughghosts says:

    We’ve chatted before. I am writing to you from a generation and half a world away, but we share a bipolar /queer-ness. You write about mindfulness here, and you are right it’s a euphemism, like hell is for those who want to imagine other people burning in it. I am working to write being – being as one might write sound. I won’t tell you you are brave, that’s bullshit. What you are is fucking honest and completely real with every word you wrench out. Completely fucking real and it hurts like hell to read this. And so it should. I almost died last year, almost fell asleep and failed to wake if not for my troubled son who heard me struggle as I went into cardiac arrest. And what had I done? Everything and nothing because the only thing I have ever wanted to do is write but I was pissing around the corners, year after empty year, not daring to be honest. And this is where you put me to shame, leave me in awe and although we’ve never met and likely never will, I think about you often and I don’t want you to die either. It fucking sucks, but you are sucking every ounce out of living against the odds though you may not feel it.
    I am finally publishing something that will be the most honest piece I’ve ever put out there. It scares me just a little. Thank you for your rawness and your realness. At the end of the day it is all any one of us truly owns.

  5. NPL says:

    Sending you much love from east coast USA. And hugs, too, if you want some.

  6. Dani says:

    Elizabeth, my heart breaks for you. I want to find the words to say something comforting and meaningful, but I don’t think I have them. Which kind of fits with what I think you’ve said here about meaning and mindfulnes: we feel pressure to be these things, from the gravity of what you are heading towards, but sometimes that’s just hard to achieve. You don’t need my or anyone else’s approval to do, think and say anything with the time that is yours. But if you did need permission I would give it a thousand times over. And isn’t it nuts – we should do that for everyone, but somehow we only think of it when time is short?

  7. Elizabeth says:

    Elizabeth, thank you for letting us in on this very personal part of your life. I feel blessed and a bit guilty at the same time to read about what you are experiencing while I am healthy. I do hope the coming months bring you minimal pain and maximum peace. I hope knowing that your words are impacting others helps in some small way too. Also, if Melbourne doesn’t work out, please know you have a place with a fellow Canberran in Bangkok if you need it.

    • elizabeth says:

      thank you so much. and don’t feel guilty to read — seriously, i remember reading blogs written by people with illnesses prior to my diagnosis til weird hours of the morning, fascinated by this world so close, and yet so strangely far from my own.

      • Elizabeth says:

        You are wonderfully generous and I wish I could help in some way. Please know I’m thinking about you (along with many, many others) and wishing I could give you a big, healing hug. x

  8. Rebekah USA says:

    You don’t speak much about fear? I wish you weren’t dying, I’ve learned some value in your writing. I was in a similar situation 4 years ago and I needed a liver transplant at the very VERY last minute I was blessed to receive on but, I wasn’t scared either. Amazingly. I haven’t a clue what comes next but, I’m thinking it’s something good and enjoyable. Bless you, today and forever more friend.
    And, you can stop trying to make this easy on others. It’s kind and in your nature but, still it’s just gonna suck for some folks. But it’s not your fault. You have somewhere else to be.

    • elizabeth says:

      this is actually very, very interesting. i hadn’t noticed that i haven’t really spoken about fear – and that fear hasn’t really been a thing i’ve been experiencing as much as i thought i would be. thank you for that. i’m going to write about that soon. x

  9. Margie says:

    Hey Elizabeth thank you so much for sharing your thoughts, so generous of you in the space that you are in. So hard to put any words in here that I feel could be any way worthwhile for you and give something back for the gift you have given.
    I have never been able to master mindfulness but when my brother was really ill last year we all thought he should do it. I think we all wanted the image of him being peaceful like a Buddha but all he wanted to do was to stay alive and have enough energy left to enjoy living and use whatever time he could to do more than sit with emptiness. He told us what to do with Mindfulness, however we did other things that he wanted. These included a couple of escapes from hospital to attend reunions and parties and us catering for whatever fetish of food or drink he could eat or drink……..I reckon you should go for those kind of things whenever you are up to it.

    I know that if all the love and compassion everyone feels for you could make you well, you would be heading into the rest of your journey with a healthy body. I hope that you can find some joy in the golden threads that are still in your tapestry and that they randomly appear when and how you need them………….. friends, pets, flowers, food, drink, music, writing (yours), writing (others), movies……..
    …………… etc
    If there is anything that you need from us out here alongside sending you loving thoughts please let us know.

    • elizabeth says:

      ❤ thank you so much, Margie – mindfulness i think, maybe it works at some times. it helped me at the beginning, and now, i just get frustrated. i hate the word 'journey' but it sort of is – we shift how we feel about these things. x

  10. suracim says:

    While nothing I write can help you realise your wish, I’m grateful for your searing honesty in your blog. Sometimes we exchange a note on Twitter – something humorous and light, a purple soda – but that all pales into insignificance when I read about what’s happening in your world. Sending you love. From one bipolar peep to another. 💜

  11. suracim says:

    I’ll raise a glass to that. To the dragons! Xx

  12. Leigh Licata says:

    I’m sorry you have to go through this. I heard you on wnyc.


  13. kjkiely says:

    Your honesty, strength, humour, candidness and bravery has me so humbled. These words are often thrown around with careless abandon, but I mean them in the truest sense of the word.
    I have recently sacrificed my health, wellbeing, sanity, my relationship with my boyfriend, neglected my dog, all for the sake of proving myself in a job that in no way is thankful for my efforts and instead undermine me on most occasions. You reminded me there is so much more. I hope I face my future with the same fortitude that you face your challenges

    Thank you for sharing your journey. You are more alive than many. Blessings

  14. Je says:

    I only met you a few times, I’m a relation of that man/wife/child you love and would do anything for. This was the last thing I could have expected to see when scrolling through the news yesterday. I’ve had lots of tears reading your blog, and a whole lot of admiration for your honesty. Sending lots of love, prayers and positive thoughts your way and if I had your address I’d hook you up with some good soft drink too 😊xx

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