“I had a brain tumour and days left to live”

My name is Elyce, I am 26 years old and a Human Rights Advisor at Aruma. I got an Acquired Brain Injury (ABI), and posterior fossa syndrome (PFS), all at 10 years old.

This is my story.

My life before my disability was great. There were no restrictions placed on me, no one stared at me, and no one discriminated against me.

When I was 10, things changed when I got more and more sick. I couldn’t go to school and had test after test done.

My family didn’t settle for the diagnosis that I ‘had a cold’. Eventually, we found out I had a brain tumour and only days left to live.

I remember finding out after going for a short walk in Southbank only to collapse. At the hospital the doctors found a malignant medulloblastoma tumour.

I went in for an emergency four-hour surgery, and my family was told I only had a small chance of survival.

I was scared

After my operation, it took me several months to gain full consciousness after I had a post-operative seizure. When I did wake up, my whole life had changed. I could not go to school or see my friends or my pets. I was scared.

My family were always at my side for the eight months I went through recovery, harsh treatments, and rehabilitation in hospital.

They helped me feel safe and motivated me to work hard to get better – even when the doctors said I would never walk again.

If it was not for their strong-willed support, I am not sure where I would be.

My new world

When I got home from hospital, I felt sad and alone. My friends looked at me like I was a weird person who had taken their friend away. My family and I struggled to find our feet, financially, socially and psychologically.

Although they saved my life, the vital treatments I had also had side effects and I developed hearing, vision, speech, and cognitive impairments. I also have poor motor skills, learning difficulties, fatigue, and loss of balance.

I know I act differently to others, I can be very emotional, experience fatigue, or communicate poorly.

I get really intimidated

Often when I go out, people look at me and I think they are thinking something negative about me.

I get really intimidated when people treat me like they do. At times, they assume I need to be talked down to, or I need to be physically helped when I don’t ask for it, or they give me unnecessary pity.

I have noticed people sometimes just ignore or exclude me. I sometimes wonder if it’s because they think it’s too difficult to deal with me, or they are scared of my disability.

It makes me happy

Although my life has had really hard times, I now live a fun and healthy life, just like everyone else. I enjoy going to markets, festivals, expos, movies, and the gym. I like socialising with friends and going on holidays, too.

What makes me happy is when people learn how much I can offer and that I am intelligent. I feel the same way they do, and I think the same way they do. Then I know we are one step closer to community acceptance and social justice!

I have always dreamed about changing the world. I am doing the best I can by working as a Human Rights Advisor at Aruma. I also care deeply about the environment and do my part by being resourceful, eco-friendly, and encouraging others to lessen their carbon emissions.

In the future I want to continue to change how the world views people with a disability through my work, and to build my own home.

Thank you for reading my story.

– Elyce