Out of the Blue

Photo by Morgan Sessions on Unsplash

I am sitting in my car at the lights and I see a sign that says ‘Chermside’. And it hits me. A flashback to the moment my little boy died. The sound of his final breath, the sight of him in the soft light of a single lamp, the feeling of tension throughout my body as I tried to prepare myself. I remember every detail and every devastating feeling of helplessness, rage, fear and horror that I felt in that moment. Even though that moment first happened in the early hours of a Wednesday more than a year ago – it was happening again in my mind at a set of traffic lights. All because of a road sign to ‘Chermside’.

A ‘flashback’ - an involuntary recurrent memory, a psychological phenomenon in which an individual has a sudden, usually powerful, re-experience of a past event. It can feel like you are being drawn back into the traumatic experience like it is happening all over again.

I have been living with flashbacks that hit me out of the blue since the day Thomas died. There are a number of different times that hit me but they all have one thing in common. They are all flashbacks of the most traumatic and painful and distressing memories I have of Thomas.

The night he passed away is one that comes a fair bit. Chermside is a suburb on the northside of Brisbane. I rarely have any need to go there but that is where the Children’s hospice – Hummingbird House - is located. That is where Tom died.

I’ll also get that same flashback when driving in the back seat of my husband’s car. On the way home back from the hospital for his last night at home, I held Thomas while he slept stretched out along the back seat with his head on my lap. I held him the same way the next morning on the drive to Hummingbird House. I cried in desperation for both trips and I can’t bring myself to climb into his back seat since. Another time is when I wake up in the morning. This particular flashback has a firm place in my life – it will not go away.

There are others too. A time when Tom almost died in the resus unit at the hospital from an aggressive bacterial infection and septic shock. The time they told me Tom wouldn’t survive the returned tumour. The weeks he was screaming and thrashing in the neuro ward after his tumour resection. There is a long list of traumatic times my brain has to choose from when hitting the flashback reel and they come for all different and innocuous reasons.

For a long time, I have felt like my brain was sabotaging me and any recovery I was making from losing Thomas. I have so many more beautiful memories of joy and light and magic than I do of the dark. So when a flashback comes, why can’t it be of the good memories? It’s never the good stuff, only the painful stuff.

Out of the blue – the devastation visits and it doesn’t matter where I am. I have gotten used to crying in public, in my car, in my bed. In public, I quietly weep and let tears run down my face as if nothing is happening. I never used to have the ability to do that. Practice makes perfect, I guess. I don’t care what other people think and I’m not hurting anyone, so I don’t waste energy on holding the tears back. In my car sometimes I will find myself screaming at the very top of my lungs with a violent force at the unfairness of it all. I’m sure it is quite the sight for any unsuspecting motorists who happen to glance across. In my bed, I can cry so hard that my wails are so intense they are silent. I shake and heave with sorrow and guilt and pain. My husband has learned to fold me up in a hug and let me ride it out.

I know I am not the only one. So many parents of children with paediatric cancer have talked about this – bereaved and non-bereaved. I went on a short google mission to find out more and the research is happening. Watching your child suffer again and again and even worse, creates a marathon of trauma clips building up in your brain. PTSD is one of the lesser known side effects of paediatric oncology for parents, but it is real, and it is long-lasting. Others include physiological impacts – bereaved mothers complain of losing hair, losing teeth, developing chronic pain, etc. The statistics for marriage breakdown show many couples will struggle remain together when dealing with the loss of a child.   

“Two studies of parents of children with cancer showed that bereaved parents had more than a significantly higher chance of experiencing PTSD than parents whose children survived treatment. The bereaved parents had even poorer outcome if they had less time to prepare for their child's death (typically under 6 months). (Source 1) 

Dr Matthew Tull, a psychology professor who specialises in PTSD says that ”Many people with post-traumatic stress disorder (PTSD) struggle in coping with flashbacks and dissociation, which may occur as a result of encountering triggers, that is, reminders of a traumatic event.” (Source 2)

It turns out that the brain does this on purpose. That it all comes down to:

1)     How the brain captures and stores traumatic memories specifically and…  

2)     How our reptilian brain is instinctively trying to protect us

So, point number 1: Our brain deals with traumatic memories differently and results in them being stored in the brain in a particular way. When traumatic events are happening, our brain is capturing so much more data than it normally would. At the same time our brain can’t process and store these memories properly because of our heightened emotional state. All efforts are focused on the details in the moment and so there is no opportunity for the brain to store and process these memories as it typically would. So these un-stored, unprocessed traumatic memories become ‘flashbacks’ which keep popping back into our thoughts, particularly when triggered.

This brings us to the second point of our brain trying to ‘protect’ us. If we encountered a life-threatening experience like, let’s say - almost drowning. In that moment the brain is completely focused on saving you. Adrenaline is released, the flight/fight response is enacted, and you survive. Your brain remembers those circumstances well and will do it’s very best to ensure that never happens again.  The noise of the ocean, the taste of salt-water, the smell of sunscreen – anything might trigger that memory and your brain will remind you to not put yourself in danger again.

When I am triggered, these traumatic memories from the past will return to me as a way to try to keep me safe in the present. It doesn’t matter that I, myself was never physically in any danger. The experiences of watching Tom suffer and then watching him die is as traumatic and agonising an experience as anything I have ever or might ever know. It doesn’t matter that Chermside is just a suburb. It doesn’t have to make sense. Our brain’s have only evolved so much – trauma is trauma. And so it warns me to never go back.   (Source 3 – This video explained it really well, so if you want to understand this more, check it out below.)

My brain wants me to avoid. As always, there’s a hitch to that thinking. If I never go back deliberately, if I never proactively process these memories and store them away as they should be, I will forever endure these ‘warnings’. The experts say, if you want to actually manage these flashbacks, you need to face them. Don’t push them down, let them happen, write it out, talk it out, catalogue your triggers and spend time finding a way to accept all of it.

I have tried other things to deal with my memory reel if we can call it that. I have visited Hummingbird House and the Children’s hospital where I spent months caring for Thomas. I listen to music I know will elicit a good old bawling session because I know sometimes, I just need a release.

I wrote the book, Big Hand, Little Hand, in part because I needed to safeguard my memories of Tom during his battle with brain cancer. In writing it, I know I have made some inroads towards dealing with a lot of what we went through. Now as I write this blog, I am hoping for the same: ways to handle the challenge of living my life without Tom beside me.

Since Tom died, I have seen a psychologist to help me deal with my grief. I’m a talker so that has been a way for me to find some answers, strategies and to acknowledge the road ahead. We’ve also been trying something called EMDR. It targets specific memories and works at this process of redefining the emotional trauma and processing the memories. It is exhausting and difficult and painful, but it is working for me.

Out of the blue, flashbacks still find me and there is more work to be done. Tom is my inspiration – everything that came his way, he faced with bravery and dogged persistence. I can endure the flashbacks as frightening and harrowing as they can be. I can persevere through therapy and find reasons for each next step as arduous as that task can be. If Tom could manage, so can I.  

My goal is that one day, I’ll be minding my own business and I will see something that reminds me of Tom. And out of the blue, I will have a beautiful flashback of a sunny day, watching him run ahead in delight towards a playground, the wind in his hair, calling to his brother. A flashback of light, instead of the dark. And instead of crying, I will smile. A lofty goal I know. Wish me luck.  

Source 1: Traumatic Bereavement and PTSD. (Jul 02, 2020). Traumadissociation.com. Retrieved July 2, 2020 from http://traumadissociation.com/traumatic-bereavement-ptsd-and-loss-of-loved-ones

Source 2: Tull, M. Coping with Flashbacks and Dissociation in PTSD, Retrieved 1st July, 2020 from https://www.verywellmind.com/coping-with-flashbacks-2797574

Source 3: Video: https://youtu.be/YNsPABfXlGQ, (24th July, 2017), The Loss Foundation, retrieved 1st July, 2020 from http://thelossfoundation.org