Roxanne (Telling Everybody)

Written by Roxanne

In my previous blog, Born This Way, I gave a summary on my path in the conservation sector with the rare neurological condition, Chiari Malformation.  I wrote about the difficult aspects of managing a disability in a physically demanding profession, as well as actions to progress in a field I love. What I hadn’t mentioned was the process of overcoming fear and imposter syndrome in being more honest about my health and life experiences with others in conservation, especially when approaching organisations for work and volunteering.  This story is about a change in mindset after taking a “leap of faith,” meeting two new people at a large conservation organisation.

In late 2020 I had a meeting with a senior manager at a large conservation organisation who I’d spoken to for several months about volunteering for a large bushfire recovery project in northern New South Wales.  Wanting to make a good impression, anxiety kicked in and wasn’t my more confident self.  Credit to him, he was very empathetic, encouraging me to be open and honest by imparting a personal anecdote.  I nearly did, but not completely.  As we parted ways, he encouraged further contact, that I provide details of qualifications and experience, and connect with the project manager for advice on how to join the project.

While the meeting went well, afterwards I was concerned about my presentation and image because I was nervous.  For encouragement and reassurance, someone in the family suggested I consider my emotions and thinking were linked to my Chiari and life experiences, and perhaps explain this to new networks.  This didn’t occur to me as the brain stem and cerebellum have little to do with emotion and thought.  Moreover, because operations were within the first five years of life, serious brain damage was prevented.  Strange as it is, it may be possible.  So, let’s embrace it whilst highlighting resilience and strength.  

Before meeting the project manager, I prepared for how I would tell her about myself.  It’s difficult to explain my situation as it’s complicated, mostly anecdotal and not within the context of my life as an adult working in conservation.  In my childhood, all knowledge and responsibility were left to my parents and doctors.  It wasn’t until my late teens and early twenties I understood the gravity of the situation.  Having sincere conversations with my parents and finding a letter from 1997 between my doctors and a list of all my procedures, I realised I could’ve lost my life or would’ve had a poorer quality of one.  Apart from that, there wasn’t any engagement or learning on my part receiving treatment so young. 

In previous instances where I would talk about my Chiari, it was only ever in broad strokes to satisfy workplace health and safety or in casual conversation with people I had a relationship with.  However, in both cases, I never revealed the full story thinking I’d weaken my position. There’s also a tacit contract where disclosing disability requires mention of support strategies to implement.  Assuming you have lived with a condition your whole life, then you should know how to look after yourself.  Even if I were trained to live with Chiari in my youth, it would unlikely to apply to a life and career I’ve chosen as an adult.  As I alluded to in the first blog, these have put me on the back-foot.  In the end, I decided there wasn’t a need for a definitive answer.  My viewpoint is enough, and uncertainty and learning “on the go” are part of it.

I then met the project manager.  For whatever reason, it was a better experience.  I told her about my condition, the operations, the experience, and whatever emotional imprint it left.  I also spoke about actions to make my situation easier at this stage of my life, including working with specialist and allied health professionals to help with my physical and mental health.  The response was well received and we got along beautifully. 

With this renewed confidence I wrote back to the senior manager, repeating the same conversation and thanked him for giving me that little nudge.  He wrote back with absolute sincerity and compassion, even going as far as to look up my condition and acknowledge the toll it had.  I was amazed and relieved.

I learned a crucial thing in telling these two people about my Chiari Malformation.  It wasn’t the just the physical limitations that were the core issue: it was also the emotional and psychological.  I made it difficult for myself by not being open, honest and vulnerable by explaining the details and the impact on the self, thinking it would be a red flag.  I didn’t give others a chance to connect or offer real support.  My views have changed on this, thanks to these meetings.  I’m starting to tell more people this about myself.  It will be difficult for a while, but to quote 20th-century French author, Marcel Proust, “Griefs, at the moment when they change into ideas, lose some of their power to injure our heart.”