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  • Writer's pictureCaterina Sullivan

Why Being Told I’d Had a Stroke from a Brain Tumour was the Best News I Could Receive

For those amazing people who have been following my journey and wondering what in the world has happened to my health, I’ve finally been diagnosed. There are still a number of questions around my diagnosis but the general consensus is as follows.

I had a brain tumour. It grew to a certain size and burst (haemorrhaged) causing a stroke. It’s unknown as to whether or not the tumour has managed to completely kill itself or if it still remains in my brain in some shape or form... but for now, the doctors are confident that the blood from the haemorrhaging will absorb into my membrane within the next few months (maybe longer) and they will have a more clear idea as to whether or not the tumour is still there. We can then make decisions from there.

The day the doctor told me about my tumour and stroke, I was so relieved. I had spent the better part of the last two years with a variety symptoms which I struggled through each day. The last few months of my battle, I saw countless doctors who brushed off my symptoms as attention-seeking behaviour, mental health issues (over which they made me feel less than worthy) or just something that belonged in the too-hard basket. There was a point I thought I wouldn’t see an end to any of this.

In this whole journey, I can only point to a handful of doctors, nurses and paramedics who I believed had my best interest at heart. Many of the medical professionals I encountered seemed to be overworked and unable to see me as a human - to them, I was just another patient. At times, I felt like I was being emotionally abused by these professionals and that my vulnerability prevented me from actually being able to escape from or take action on that abuse.

I remember studying in my AP Psychology class what happened in Abu Ghraib and feeling somewhat unsurprised by human beings' propensity to sink to our lowest and poorest behavioural traits when we have power and control. However, to be on the receiving end of that was a different experience entirely. Of course, what I endured was nowhere near the level of torture and mistreatment which unfolded in Abu Ghraib... but another learning moment nonetheless.

The negligence of both my physical and mental health is something which I am still learning to accept. I am lucky that how I was treated didn’t have any lasting negative effects on my physical health. I’m sure with time and with positive actions on my part, my emotional wounds will heal.

Each day, I am coming to terms with the fact that this happened. I’ve seen the toll it has taken on my immediate family, my extended family, my relationship, my friends and my colleagues. There are some relationships that have been so badly damaged from this whole ordeal that I worry they are beyond repair.

With time, I believe I will be able to tell my entire story: every instance of poor treatment and abuse I faced... but for now, it’s my story that I’m learning to articulate in my own time.

My question is, “how do I fix this?” How can I fix a system that is so broken?

I think the first step is to identify that what happened to me was wrong and accept that. I think I’m firmly at that point. The next step is to tell my story to as many people of influence as possible - politicians, heads of government departments, quality assurance organisations. I’m not doing this to get revenge or to get anyone into trouble. I’m not vindictive; I’m petrified. I’m petrified this is going to happen again. And again. And again. To other young people, to parents with young children, to people from culturally and linguistically diverse background, to the elderly, to people living with a disability.

I’m relieved I finally have the missing component to my narrative - a diagnosis. This acknowledges all of the struggles I have been through and provides a context for my story. It validates my physical and emotional pain and releases me to move on with the next stage of my life - recovery. It’s such a calming feeling. I just hope each and every battle I fought will allow me to ensure others don’t face this same neglect and abuse in the medical system.


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