On Difficult Dx Conversations

Jacci Pillar

So I just got some bad medical news and I have some intense stuff to go through before I know the full damage or what to expect. But not much is going to change, I’m just going to be less available for others for a while. Study goes on, comedy goes on. There will be interruptions and some difficult stuff. But I need to focus on my own care, more than ever and I have been trying to build a support team.

Yesterday I reached out in a number of ways for help to select people and it was nearly as difficult as hearing the news my genetics have failed me. I reached out to people because I don’t have family nearby and what family I have left can’t help.

People say “they don’t know what to say”. Well, I decided to write some tips after I spent 30 years…

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Little c Courage

Enough talk of resilience. Enough talk of trauma. I want to talk about courage instead.

So, our family has been through a shit-ton of well…shit. I am prepared to accept that there is evidence for intergenerational trauma. But I have been saying that then that also means that there is grounds for intergenerational resilience. But, I want to talk about courage instead.

This tweet (pictured below) made me realise just how much I am really f’n sick of both the word resilience – particularly as Melbourne is in yet another lockdown right now. The tweet from Zandashé L’orelia Brown (@zandashe) reads: “I dream of never being resilient again in my life. I’m exhausted by strength. I want support. I want softness. I want ease. I want to be amongst kin. Not patted on the back for how well I take a hit. Or for how many.”

Resilience, seems like another measurement of the hits we have taken, not a measurement of our own agency or power. As if our experience swings between the two. “Oh, I’m traumatised today. Oh I’m resilient today”. The truth is so much more than these labels.

So back to courage. I think there is big ‘C’ courage and little ‘c’ courage in the same way trauma is discussed. We overlook lots of little c courageous acts, daily courage, for the more glamourous Big C Courageous acts like mountain climbing. But daily courage, no matter how small they seem, add up to being a courageous person.

I think little c courage takes more effort and persistence (with no visible pay off or status) than Big C courage. This is what melbourne is mustering right now, daily efforts of a persistent courage.

Certainly my family has a history of Big C courage, myself included. I’ve worked in dangerous places, worked on dangerous sites and in work that has high risk. But to me that was just want you do. I think the example set by my Dad made sure of that.

For Dad, a life without what some would call adventure didn’t seem possible – but was not done for status. After his return from WWII and the jungles of Papua New Guinea, he worked for the Australian Lighthouse Service. He often talked of Maatsukyer Island lighthouse – Australia’s southern most lighthouse off Tasmania. But also Tasmania’s Cliffy Island and the difficulties in high seas and getting equipment and spares up the cliff face to repair it (Dad’s pictures here were taken in the late 1950’s).

Pictured to the top left is Dad standing on a rocky cliff on Cliffy Island looking out to see. He is in shorts and a short sleeved shirt. He has a mop of dark but short hair and is standing in a relaxed pose.

Bottom left is a view of a 4m wave in Bass Strait from the deck of a boat. Dad rushed out on the deck with his Box Brownie camera and managed to take this shot. Which in the days of still photography was quite difficult (and quite dangerous without a harness!) to do.

I loved listening to his stories of lighthouses and sea travel. Pictured to the top right here is Cliffy Island (a large rocky island that just looks like a big rock was dumped in the sea and floated there).

Middle right is the precarious boat house that sat on the cliff face and a system to cranes and pullies that would life a small boat out of the sea and onto a landing. This was dangerous work indeed.

Bottom right is a small row boat loaded with boxes and equipment being attached to a pulley and rope and onto a crane arm. It is preparing to be lifted up 20m onto the landing on the cliff face above. Crew are standing in the boat and would have stayed in the boat as it was lifted.

So it’s fair to say I received a good dose of intergenerational Big C courage that would take me to trek 211 km through the Himalayas, mountain bike down Death Road in Bolivia and travel to places on my own that most would consider ‘dangerous’. It’s not really a surprise that I would end up doing remote area field work on my own either. Or that I would not be frightened off by a large 4WD tire and be able to patch and split rim it on my own in the middle of nowhere. I never really questioned that this was possible, I just did it.

Big C courage is easy to see and recognise, but what of the other daily forms of courage we practice? So, let’s get to little c courage.

This is the daily stuff. This is where I find all the discussions of resilience a tad frustrating. Because if your life is filled with a constant series of needing to exercise courage on small scales – it can be bloody tiring and the onslaught creates it’s own demands. It requires a different, more persistent kind of courage.

The fact remains that 12 months ago I fought suicidal ideation on a daily basis. After years of abuse in an abusive marriage and a series of unforeseen disasters, a recent workplace bullying and harassment scenario, I had to muster a whole lot of little c courage to keep going. In November 2020 it was less frequent, after months of hard work, working on understanding my triggers and gradual re-exposure therapy (in a pandemic and lockdowns). I felt both traumatised and resilient and I think they co-existed.

I think my survival is a testimony to courage, not resilience. I think resilience is another way to say, toughen up when we all know rest and recuperation are more likely to help us recover.

I think courage also means not that you have toughed up, but that are prepared to say you are afraid, that you need help, that the emotional work is hard – that takes more courage than any toughen up resilience discourse.

In March, I got told my rental property was being sold after these months and months of rebuilding myself. I went through a debacle with a real estate agency that was quite dangerous to my health. A scenario that many people in Melbourne will relate to. The endless moving house that renting here seems to equate to.

Particularly as March 29 appeared and the previous eviction bans were gone and suddenly tenants and landlords were faced with economic fallout of 2020. And now people are facing insecure housing yet again in another lockdown that is going largely unsupported.

I had paid full rent and had not fallen into arrears, but my landlord was struggling financially and had to sell. I had really struggled through 2020 lockdowns (like many of us) and the sudden housing insecurity was terrifying. As someone who manages disability and two chronic illnesses it was hell for a few weeks and I was terrified I would go back to where I had been 12 months before. But I buckled down and mustered as much little c courage each day as I could to manage a house move, because the disruption of open for inspections and housing insecurity are major health risk factors for me.

This was all much tougher to do than any of the Big C courage things I have done.

So let’s talk little c courage instead, the courage we overlook but is none the less courage. The courage to:

  • Call out bad behavior. For my recent example, real estates who break the rules and then lie and gaslight you. The courage to take notes and keep evidence. To withstand them denying any harm they caused despite evidence of above lies and potentially unlawful behavior. To push back when they continued to pressurize me as a disabled tenant and ignore medical advice. I could have just continued to have my boundaries and safety compromised because it seemed easier, but the results could have been a lot worse.
  • Discerning which battles to pick requires courage and act in good faith. The above scenario involved three parties. A selling agency, a rental agency and the owner of my rental property. When the tribunal claim was lodged two of those parties (rental agency and the owner) began to act in good faith. The other party decided to double down and make legal threats against me for just taking action within my legal rights. I wasn’t afraid of them and it was a continuation of the previous behaviour. But then the two other parties were acting in good faith and vengeance was not my priority. Vengeance is the cowards way in my view. I made a choice to withdraw the claim and work with the two parties acting in good faith. I’m now settled and in safe and secure and affordable accommodation again.

A safe place to live is a human right but keeping it safe requires courage. The day to day battles we all face require courage. I think courage is worth focusing on. It takes courage to be kind just as much as it does to be mean spirited.

In a world obsessed with unrealistic notions of some mythical able bodiedness, it takes courage to rest and to heal. Courage encompasses a range of experiences and emotions.

Finding courage in others is helpful as is giving courage to others. Can this vague and victim blamey resilience thing do what courage can? I don’t think so!

Maybe some might disagree and say courage can be applied the same way. But courage, in my humble opinion, courage is more useful a concept.

And right now, Melbourne people, we are running with as many little c courage acts as we can to overcome our 4th lockdown. I’m not going to give you “you got this”. But I will say that collectively our courage is every little thing we do to get through.

I think we should be talking more about courage and not carrying on about resilience.