Hannah’s Story
Looking back, there were some symptoms but nothing glaringly obvious.
My hearing started to fluctuate in my late twenties – only slightly, and I would put it down to developing a cold or feeling rundown. My eyes had never bothered me, but I began to squint, and things felt a little ‘off’.
A visit to the optometrist provided no answers as my eyes were in good condition – I later learned the issues were in my brain and not my eyes themselves. In the end, it was soreness in my jaw that led to an MRI which started my diagnosis.
I remember the moment perfectly. It was a Wednesday afternoon in May, my 29th birthday. I had been called in unexpectedly to receive the results of a scan performed three days earlier.
My doctor brought me into his room and told me
“An MRI is a photograph, and like a photograph it picks things up in the background, and in the background, we can see you have brain tumours.”
Hannah and her siblings, Adam and Holly.
Neurofibroma-what-now?
I was soon diagnosed with a rare neurological condition, Neurofibromatosis Type 2 (NF2).
I had no idea what that was - hardly a defense.
NF2 means I grow benign tumours anywhere on my nervous system and I quickly discovered I had more tumours in my brain and along my spinal cord.
I began doom-scrolling and learned that deafness was looming large, somewhere in my near future. But when?
You can’t live on ‘action-station’ mode when you have a degenerative condition. You have to slow the pace down.
It’s a marathon, not a sprint.
But how do you prepare for a silent world when all you’ve ever known is sound?
Hannah having chemotherapy, on her 30th birthday.
Silence.
In 2020, the fear became a reality, and I had my first brain surgery; four and a half years after my diagnosis of NF2.
As expected, the procedure left me deaf on my right side and everything was suddenly different. The world sounded weird! Gone was my sense of direction, of space, of belonging.
I had an auditory brainstem implant (ABI) inserted during surgery. My final chance to access any sound, with a ruined auditory nerve.
But nope. No such luck. I recorded no auditory responses from my ABI. I accepted this as best I could and used a hearing aid on my other side.
Six months after switch-on, I was told I needed to have the left-side acoustic neuroma removed. It had had a growth spurt and was wreaking havoc on my brainstem.
If we left the tumour, I would lose the ability to walk and gradually deteriorate further, losing more capacities as I went. If we removed the tumour, I would lose my remaining hearing and would be completely deaf.
Entering theatre that day was the hardest thing I’ve done.
Allowing the anaesthetist to render me unconscious when I knew my world would be gone forever when I woke up; it felt unnatural and went against my sense of self-preservation.
Hannah sitting in hospital, soon after her second brain surgery, completely deaf.
Building a new life
After the intensity of brain surgeries and medical complications had passed, and people had moved on with their lives, I was left feeling very alone.
“What on earth do I do now?”
I returned to teaching and soon realised how impossible it was going to be. I also felt bound to my previous able-bodied identity when I was back in that environment and this made growth very hard.
I joined Deafblind West Australians and quickly became their Chairperson. It was surreal but also gave me a sense of belonging. I didn’t need to be embarrassed by how I looked or the fact I couldn’t hear.
I ramped up learning Auslan and began holding full conversations. I joined committees and realised my perspective was a unique insight for both the hearing and D/deaf worlds.
Once I had recognised this as a gift, I decided to start making some lemonade from all my lemons.
Hannah at an event representing DBWA, proudly wearing an ‘I lip read’ badge.
What Happens Next?
Where do you go from here?
What do you do?
How do you do it?
I lost my hearing and there is a deep sadness that comes with that. My eyesight was also significantly impacted by the surgery and I now identify as deafblind.
Chronic grief means I have my good days and get out there and fight, but I’m not a Teflon-lady. I have bad days. I get angry, I feel sad. This is okay. I have supports in place and I keep trucking along.
I have always been involved in the disability community, first as a teacher of students with profound disabilities, and now, I count myself within this group.
Using a combination of learned and lived experience, I am breaking down barriers to help guide the way to a more inclusive world.
I grew up in Australia and have led a life of privilege. I travelled the world and went to university. I got married and made a career.
With this privilege, I find comes a new sense of responsibility. To do more than I could within the classroom walls. To not only teach my students how to self-advocate, but to show society what they can do to be more inclusive. To be allies.
If you want to know more about my story, well, you’ll just have to meet me!
Hannah with her white ID cane, heading to the footy at Perth Stadium.