Tara’s story: Let’s change our perception of death

In my Twitter feed this morning I came across Tara’s story. I resonated with so many of the things she said I transcribed her video clip. I was struck by her eloquence, poise and wisdom. She succinctly said a lot of things I have been feeling but unable to find the words to say such as:

  • Death is “an inevitable fact of life that is poorly spoken about or prepared for.”
  • “This journey [of dying] … was full of uncertainty.”
  • “This topic [of death and dying] was not unique and exclusive to me and people like me but rather a conversation we all should be having, regardless of age, health or conditions.”
  • “The way things are right now in our society makes death and dying very frightening because the only time people get asked about their wishes and end of life care is when death seems to be looming directly over them. So not only are we challenged with processing the end of life but we are also having to think about tough questions that have been exclusively reserved for those who are perceived to be closer to death than others”
  • Having conversations about death and dying means “that when the time comes we are each able to revisit these questions as familiar concepts opposed to completely foreign and devastatingly unbelievable circumstances.”
  • “There are very real emotional and social challenges associated with this topic.”
  • “I have found great strength in focusing on how I perceive what I cannot change.”

Her comments make me think about the link between coming to terms with our own death and then thinking about the death/extinction of so many species which could include humans as well. We are living in the Anthropocene Era where uncertainty is becoming the new normal. Thinking about death on any level; personal, social, cultural, political; is frightening for us and we do not like to do it. As Tara said thinking about death and dying seems to be “reserved for those who are perceived to be closer to death than others.” Well aren’t we as a species getting closer to death, to extinction? Maybe now would be a good time to start talking about death and dying so death becomes familiar and not a stranger. Being at peace with death will enable us to feel more enlivened and energised now so we make better decisions. The decisions and actions we take now will serve us better if made from a place of calm rather than a place of fear.

Death is inevitable. We cannot change this fact of life. What we can change is our perception of what we cannot change.

[transcript]

“My name is Tara and I was diagnosed with brain cancer when i was 27 years old. Prior to my diagnosis tough conversations about death and dying were not on my radar. That topic was for older or more fragile groups of people that I could simply not relate to. But that all changed when my doctor found a lesion in my right frontal lobe. From the moment I began filling out pre-surgery paperwork about advance care directives to receiving that life changing call telling me that I had a type of incurable cancer I felt smacked in the face by an inevitable fact of life that is poorly spoken about or prepared for. Over time I developed a desire to have really tough conversations with my family so that I could share my experiences and thoughts with them and feel less alone on this journey that was full of uncertainty. At first this was quite challenging for my family especially for my mother because her initial reaction to tough conversations would usually entail telling me to not focus on the negative and to hope and pray for a miracle. But one of the things that has been really helpful for me and my family is to be able to get past these initial and limiting interactions and be able to have these tough conversations was the realisation that this topic was not unique and exclusive to me and people like me but rather a conversation we all should be having, regardless of age, health or conditions. The way things are right now in our society makes death and dying very frightening because the only time people get asked about their wishes and end of life care is when death seems to be looming directly over them. So not only are we challenged with processing the end of life but we are also having to think about tough questions that have been exclusively reserved for those who are perceived to be closer to death than others. But the reality is that none of us live forever and even though some people may seem to have better odds than others tomorrow is not guaranteed to anyone. So with that realisation I began advocating for my entire family to have these conversations then revisit them regularly like the batteries in our smoke detectors. So that when the time comes we are each able to revisit these questions as familiar concepts opposed to completely foreign and devastatingly unbelievable circumstances. I know this easier said than done. There are very real emotional and social challenges associated with this topic and not everyone sees it the way I see it, and I probably only see it this way because it took me having a diagnosis to think about it and prioritise it, but regardless I have become so empowered by this idea that there are still things out there that I have a choice over that if nothing else I hope to leave you with an additional perspective to consider for your own circumstances. If you happen to be a relatively healthy person statistics should provide you with confidence that you are not likely to be diagnosed with  brain cancer or be hit by a bus on a random day so without causing paranoia about death I hope this message can begin to open a door for each of you to have those tough conversations about your future wishes regarding being comforted, supported, treated and remembered when the time arises. For those of you in similar health situations like mine where the clock seems to be ticking louder than ever before you are not giving up hope by talking about this. You are simply ensuring your wishes regarding the eventually inevitable circumstance that everyone will face are communicated and respected. I have found great strength in focusing on how I perceive what I cannot change and I hope that you can find strength in that as well. So please consider offering the gift of these conversations to your entire family and begin transforming your perspective on death and dying to one that defines it as an inevitable fact of life that can in fact be very well spoken about and prepared for.”

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