Over the last two weeks, I posted some thoughts and opinions on my Facebook page as to why I believe that chasing happiness can be like a sickness, and how the pressure to be ‘happy’ or ‘on’ all the time can do more harm than good. Here it is in full:
Hi lovelies, I read a quote earlier in the week and it’s been irking me. Like the thinking out loud girl I am, I feel compelled to write about it because what I’m about to share affects most of us at one point or another. So strap yourselves in, because this is a long post. This quote rubbed me the wrong way as soon as I read it. It had a nasty sting in its tail and summed up my very strong opinions about what I call ‘positivity‘ or ‘inspiration’ porn’. I’m not going to post the quote for copyright reasons, but the gist of it was this: ‘our pain is a gift and we can harness that pain into passion and other good stuff. Be grateful for your pain, as it has many lessons to teach us.’ Well. I. Call. Bullshit (hello bullshit? Are you there? It’s me, Carls … yes, I’m calling to report about how skewed the positivity and happiness movement is. Hello? Hello?! Ugh.)
Last year, I had a conversation with a like-minded gentleman about how the positivity movement oft times does more harm than good. We’re expected to suck up our situation and smile through it like an automaton, so here’s a question (one I’ve asked before) …
WHY THE FUCK WOULD I BE FEELING GRATEFUL WHEN I HAD A BROKEN VAGINA AND A POO BAG? Did having cancer give me any wisdom I could hammer into gold? Nup. It was one of the most horrific experiences of my life. See that photo of me? I’m not looking very grateful, am I? Well, shame on me for not gleaning anything out of the subsequent coma I’d soon be in and the three months I existed with an ileostomy that either leaked or exploded several times a day. At the very moment this photo was taken, I was terrified, miserable, and in pain. But mostly terrified.
Here’s the thing. So many people have fallen into the happiness trap where every experience – good, bad or indifferent – is a chance to learn something positive about ourselves that we can share for the greater good. Well, I’m here to tell you that that’s not true and you shouldn’t feel guilty into thinking otherwise. I tend to look at things through the lens of reality.
In this photo I’m not smiling because my reality at that time was a massive bowel obstruction, seizures, coming close to death (again) and some of the most horrific physical and psychological pain and suffering I’ve ever known.
If you’re going through shit, you have every right to be curmudgeonly, to wallow or to scream at the universe. We’re human and not every fucking thing is a lesson or a chance to be more ‘enlightened’. A hyper-positive attitude was never going to get me through transplant or cancer. It was more down to sheer will, the marvels of modern medicine, my transplant team, the love of my family and friends and the knowledge that I had no other choice except to go on.
I didn’t know who or what or how I was supposed to be after my transplant and it was a time of mass confusion with what felt like a thousand conflicting emotions that I felt so guilty for even having in my head, let alone holding onto. There’s so much more I could write (I’m writing a chapter on this at the moment), but I’ll leave it to you to feel how you want to feel. Don’t buy the hype. Fuck Deepak Chopra, Louise L. Hay, Tony Robbins and other charlatans who espouse this rubbish that in order to grow, we must suffer. In the spirit of Fleetwood Mac, my best advice is to go your own way. In the spirit of me, fuck that shit. Peace out.
The post received a fairly conclusive reaction apart from one single exchange of words with a person who doesn’t even read my blog. Coming from a place of fear and unresolved issues will do that. But further to what I posted last week, yesterday I found this old chestnut …
And as much as I love a stone cairn, I have no time, patience or tolerance for such a misguided sense of privilege. I prefer this gem …
And so I present, my 2018 Health Shit List …
1 bronchoscopy (which equals one general anaesthetic)
1 appointment with my gynaecological oncologist which lead to …
1 pre-admission clinic so I could have …
1 unilateral oophrectomy (removal of an ovary due to a giant cyst I was worried was cancer. It wasn’t)
2 bouts of bone pain as a side effect of antibiotics
Countless episodes (and days) of nausea where I’ve needed chemotherapy grade anti-emetics
1 major sinus infection and the six months of migraines and headaches every day preceding IV’s
1 chest infection
1 major depressive episode
Complex PTSD where the closest comparison my psychiatrist could come up with was me being a concentration camp survivor
1 CT scan chest = 1 episode of scanxiety
1 CT scan sinuses
6 chest X-rays
Dozens of appointments with my GP
4 lung function tests
5 courses of oral antibiotics (one of which made me suicidal)
2 attempted courses of nebulised antibiotics my throat couldn’t tolerate
50+ blood tests, including needles in my feet
2 internal jugular lines for IV antibiotics which necessitated two trips to ICU
100’s of finger pricks for diabetes
100’s of shots of insulin
5 serious hypos/low blood sugar levels where I was unable to walk, had trouble breathing and thought I might die on the kitchen floor. Naked. With the fridge open.
2 optometrist appointments
1 dental appointment (routine) as well as two cracked teeth and two fillings (wtf?)
1000’s of tablets, some cytotoxic and cancer causing
5 psychiatrist appointments
2 psychologist appointments
1 EMDR session
1 trial of a norepinephrine and dopamine reuptake inhibitor for depression, which has mercifully worked
1 trip to emergency
2 inpatient stays, albeit short
6 lung transplant clinic appointments
1 skin check because I have a 65% higher chance of developing skin cancer and melanoma from the combination of anti-rejection medication and how they interact with ultraviolet light. Because I’ve stayed out of the sun and worn sunscreen pretty much every day since I was 21, my skin check was perfect.
The possibility of a condition called mycobacterium abscesses which would involve a year – A YEAR – of IV antibiotics, as well as other oral antibiotics which can stuff my liver and kidneys. Thankfully, my doctors are 99% sure I don’t have it, but since it takes six weeks to culture I still have two weeks where I could get a phone call to say I have it. The waiting alone is a complete and utter mind fuck
Terminal thrush. There, I said it.
I’m yet to have my Pap smear, colonoscopy or my mammogram
Here is a sketch I did at the beginning of the year to show what my body has been through. After I drew this, I walked back to it a couple of days later and thought, ‘holy shit, I’ve been through a bit of trauma.’
I’m not one for comparing my experience to others, but a friend sent me her shit list today and it made me feel like I’d come away relatively unscathed from my own annus horribilus. And really, I’ve come off lightly after speaking with other transplant friends who have had cancer, are on dialysis, whose lungs are failing and the rest. Everything is always uncertain, and while this might sound hyperbolic, lung transplant recipients live on a razors edge. I say ‘lung transplant recipients’ because lungs are the most challenging organ to transplant and keep healthy.
Before transplant there was a sense of safety – an absence of fear, if you will. I was always ‘fine’ because I knew what to expect. Infected port-a-cath and resultant septicaemia? Fine. Spending my birthday in hospital? Fine. Having a port-a-cath surgically inserted upside down by mistake? Fine. Coughing up blood before singing in front of several hundred people? Fine. Having my lady bits rearranged and an ileostomy? Not fine.
Having a transplant is the ultimate gamble, but I’m not a gambling woman. But I didn’t want to die so I went on the list. I didn’t want to die so I clawed my way back to life and said yes the night I was offered donor lungs. I didn’t feel elated. I didn’t feel excited. I felt sick. I felt sick because I thought I was going to die that night, and for so many nights after that, and there was a family experiencing the worst moment of their lives.
I find myself oscillating between gratitude and guilt, and feel a palpable sense of that when I have a moment, a day, a week or a month when I hear myself say exactly the same words I said in the days and weeks after transplant – ‘I wish I’d never had the surgery.’
Afterwards, I didn’t know who or what or how to be. It wasn’t as though I wanted to die – I just didn’t know how to live. Twenty years on and I am still learning. Adapt or perish.
I realise that these lines of thought will make some people uncomfortable and even combative, but until you’ve walked the line with me with one foot planted in life and the other planted in death, it’s best if you keep your opinions to yourself. I’ve survived the unsurvivable, and not just once. I’ve learned more than my fair share of lessons, so here are a few I’d like to share:
– Sometimes when you reach for a life jacket, you’ll find it’s made of barbed wire.
– Time is a healer and a thief in equal measure.
– Grief and life are one and the same – one minute you’re gasping for air, the next your rolling through peals of laughter and joy.
– There is no point railing against genetics, as brutal as their truth may be.
– I am the custodian of two lives – mine and my donors.
– I fear decline more than death.
– I feel as though I need to atone every day even though I wasn’t responsible for my donors death.
– When it comes to guilt, you can treat the symptoms but not the cause.
– My body has been a sterile field more times than I can remember.
– Everything in my life at one stage or another has been pathologised – emotionally, physically, psychologically.
I’ve also learned that despite these harsh truths, I’ve had a wonderfully rich life. I might have lead a double life, but I was a happy kid who was just happy to be here. I was lucky enough to have two incredibly dedicated parents who did everything in their power to keep me well. I travelled overseas. I had an excellent education and my friends have never faltered even when they could have. I’ve had some marvellous opportunities come my way, and people who were once strangers are now friends. I was lucky to be a mistress of adaptation from an early age, so I’ve worked out what works best for me when I’m either happily paddling along or if I have to adapt yet again:
– Hibernate to rejuvenate
– Long periods of silence, reflection and limited contact with the outside world (aside from my immediate family and friends – okay, sometimes them too, but they understand)
– Music and singing (badly)
– Watering my garden, watching the transformation of my little ecosystem of trees, seeing my veggies growing and talking to my plants.
– Being surrounded by books and reading voluminously.
– Being in nature, preferably the forest where I can touch and hug trees, but the ocean works too. It’s nice to wash the day/week/month/year off.
– Being rude and vulgar with friends who get me.
– Observing and forgetting all concepts of time.
– Essential oils (I can feel the eye rolls)
– The full lunar cycle (more eye rolls)
– Simplify, simplify, simplify, because all I want is to live a simple life with as little ‘stuff’ as possible (except for a mass surplus of books)
– Help others when I can, which also means ‘shut the fuck up and listen’.
– Ritual and ceremony, like the spell I recently cast on the last full moon.
– Beautiful conversations with friends and strangers. You should say ‘hi’ to a stranger because they often have a story to tell you and you’ll learn something new.
– Deep, deep breaths every morning
– Yoga 🧘♀️
– A good cuppa and outstanding coffee
– A bloody good laugh (honestly, I’d be dead without gallows humour)
And so …
There is much to celebrate, and while I balk at the afore mentioned inspiration porn, there’s a march of pride in my chest knowing I’ve nearly made it through one of the most unyielding years of my life. I’m not going to say ‘next year will be different’ because it may not be, although I’m feeling a little more buoyed by a couple of prospects.
Finally, as I learn to love and let go of my past – as fetid as it may be in my mind – if I keep invalidating my experiences and softening the truth, then really – who am I?