Disability, death and grief: Tristram’s reflection
On Death
By Tristram Peters · Originally published 31 August 2016
Original article
The first time I nearly died I was ten. I have a condition called Spinal Muscular Atrophy which means my muscles are weak and flimsy. My many years in an electric wheelchair had caused my spine to slowly buckle in on itself. The drastic yet necessary solution was to graft two titanium rods to it. Everything went well until just after the surgery, when my body started shutting down, and my lungs let out what could have been my last whisper.
At the time, I was drugged on morphine, so I didn’t know what was happening. My parents tell me they were pushed out of the way as the doctors swarmed, shoving tubes down my throat and up my nose to force oxygen back into my lungs. In their desperation to save me they tore off part of my nose and banged my head so hard that I now have a small bald spot.
Soon after, in a poorly lit room, the doctors spoke to my parents in low tones. My condition is the biggest genetic killer of children under the age of two. They gave my parents the speech no parent ever wants to hear: your child may die. In my drugged state I did not know what my body was going through but I slowly recovered. A week in intensive care was followed by another week in hospital, which was followed by two months at home. There is nothing more triumphant than proving a doctor wrong when it comes to matters of life and death.
The first death I encountered was my grandfather’s. I was eight. I remember sitting at the kitchen table drinking tea with four spoonfuls of sugar as my mum, aunty, and grandmother planned the funeral service. I didn’t cry, but not because I wasn’t sad. Instead, I felt a mixture of growing unease and helplessness, as my child’s mind came to realise that death was real.
Over the next few years, death came often. I have many friends with similar conditions to my own. My best friend, Chris, had Duchenne Muscular Dystrophy, a slow degenerative disorder that robs the body of its muscles and its independence. He died in 2007 when his heart couldn’t beat any longer. In the past year, I’ve lost another three friends.
I mentioned this fact to an able-bodied friend recently. She asked how I manage. The truth is that I get scared going to sleep sometimes, fearful that I might never wake up, but I didn’t tell my friend this. I just told her that when you live with death, you get used to it. Death is my life-long companion and that’s okay. By knowing it’s there, I live.
No matter how you confront death you just can’t win. A friend of mine has an inoperable brain tumour. There is nothing her family can do but wait. I visit her at St. Vincent’s Hospital in Brisbane, where the room smells of flowers and incense. The walls are painted blue and green in an effort to make everything neutral and calming.
I sit by her bed and speak to her family in whispers. She can’t communicate anymore, except for the occasional smile or nod of the head, but you can tell she’s at peace. Still, it’s hard on everyone: her husband, daughters, mother, sister, brother-in-law, cousins, nephews, and nieces. We all know that death stands in the corner.
A week prior to my most recent visit, I spoke to a friend of mine who works as a nurse. Jade, an old school friend, had helped me out as a carer for many years. It was obvious from her strong desire to help others that she would one day become a nurse, but even she found it hard doing a prac placement in a palliative care ward.
‘It was very confronting,’ she confessed. ‘Everyone was on their deathbeds. All we could do was make them comfortable. I actually had to bag a dead body while I was there—it involved cleaning them up, taking all their jewellery off, rolling them over, and putting the little tag on their toe.’
Only a few weeks ago, she saw someone die in front of her: an elderly woman undergoing a simple procedure.
‘You don’t know them that well, but it’s still really hard. I didn’t think about death that much beforehand. It sounds harsh, but you sort of get used to it. It’s not that you don’t care, but you learn how to deal with it.’
I think of this conversation as I sit in St. Vincent’s Hospital. My friend was diagnosed more than four years ago and was only given a year or so to live. But she confronts death and deals with it, constantly saying, ‘Not yet.’ She beats it away, at least for a little while longer, and in the time she has left, she lives.
The first time I confronted death I was ten, but I’ve had to do it many times over the years. Whenever I get sick, my parents worry that I’ll develop a cough I might never shake. Yet, my body’s decline seems to have slowed in the last few years. My lungs have even improved somewhat. Once again, I proved the doctors wrong.
I do not know when I will die; nobody knows that. Death waits and one day I’ll meet mine. But knowing this means I live and fight to keep living. Because there’s tomorrow and the day after that and the day after that, and maybe even another after that.
Tristram Peters
This piece was first published in Bumf. You can see Tristram’s first Clickablog article, On Disability and Sport, by clicking here.
Clickability editorial update: October 2026
You can decide how much of this account to engage with
The essay may resonate, feel upsetting or have little in common with your experience. You do not need to turn fear or loss into motivation. If you want to talk, choose someone who can listen without asking you to be positive or explain your whole medical history.
For questions about your condition or treatment, speak with the relevant clinician. For the effects of loss, healthdirect’s grief information outlines support options. Practical disability assistance can help with daily tasks alongside that support, but it is not a substitute for clinical care.
Listen without making the person carry everyone’s reassurance
Ask whether they want company, practical help or space. Avoid treating survival as a contest with doctors or expecting a particular emotional response. Your own grief and uncertainty may also need support. Discuss health questions with the appropriate clinical team and respect the person’s preferences about who is involved.
Questions readers ask
Can the essay predict another person’s medical outcome?
No. It is an individual historical account, not prognostic advice. Official guidance
Find practical assistance when you need it
If you want help with everyday disability support, tell Clickability what you are seeking. Compare providers and discuss arrangements that respect your preferences.
