Phil Thorn celebrates life

To celebrate Helen Keller Communication Day on 27 June, Phil Thorn wrote about his journey through deafblindness and the impact it has on his life.

Image: Phil Thorn using his Braille Note. One of Phil's sculptures is in the background

"Three years ago I went on a journey from being a healthy 39-year-old father of two, running a business in Queenstown, to becoming both deaf and blind.

I'm sharing my story with you on Helen Keller Communication Day to give an insight of what it's like to be deafblind. And most of all I want to spread the message that, with the right help, a disability doesn't need to hold you back. I celebrate life and I want to make the world a bigger, brighter place.

In 2008 I was living with my amazing wife, Julia, and our two children, managing a camp and conference centre. I loved my job and working with people. On September 26, 2008, I was suddenly struck down with bacterial meningitis. I slipped into a coma and, thankfully, my wife got me into an ambulance quickly, which helped to save my life.

In hospital my life teetered in the balance for three weeks.

When I finally came out of the coma, my world had changed. I was now deaf and blind, and I also had very loud tinnitus in my head, which sounded like a jet plane. While I was in the coma I came down with pneumonia and had a series of strokes, which left me paralysed down the left side of my body and in both legs from the waist down.

I was moved to a rehabilitation centre, where my wife communicated with me using foam letters, which I felt with my hands. This is a very slow way to communicate, but I soon learnt the frightening truth about my permanent disabilities. It was rather challenging to be in a dark, noisy-yet-silent world, with no use of my body from the waist down. The world had changed for me and for the people I loved most, who I could now only hug.

My amazing rehabilitation team started working to help me rebuild my world. A speech therapist discovered deafblind signing and taught me, which helped to speed up communication. While in rehab, I was given the chance to learn Braille through the Royal New Zealand Foundation of the Blind and I jumped at it, as I realised it would help me create a future. It also gave me something to do as I had many hours of loneliness and darkness.

After completing the course, I was given the opportunity to learn how to use a deafblind communicator, a portable communication device with all sorts of functionality based around Braille, which a deafblind person can use to interact with others.

Communication is a big thing for me and I now use it every day for things like emailing friends and family - and for writing this.
A year after my illness, I had an operation to install a cochlear implant. This has helped to reduce the loud tinnitus and also to restore some hearing. Currently, I am not picking up speech, but I am working hard on it.

I attend the gym daily with the belief that I am going to walk again in the not-too-distant future. This year I have also begun studying health psychology through distance learning. In my spare time I enjoy doing sandstone sculpting.

In the future I hope to run a motivational business based from my home. Once I'm back on my feet, I'll then work towards entering the Lake Taupo bike race on a tandem bike. I plan to travel overseas with my family for a holiday and would like to do the Milford Track, along with many other things.

Life is challenging and it is still hard to interact with my kids at times, but technology has made life a lot easier. I celebrate that my life has been given back to me.

I acknowledge all of those who have helped, encouraged and supported me along the way, especially my family for sticking beside me through this "crazy-amazing" journey, as I call it. There is still a long way to go, but I am determined not to let it hold me back. So watch this space!Thank you for taking the time to read my story. Keep believing in your dreams, even on the hard days, because with inner strength and hard work, anything can be achieved."

There are thought to be more than 1500 New Zealanders whose deafblindness has a significant impact on their lives. Merv Cox, President of Deafblind (NZ) Inc says that Helen Keller's international following and accomplishments "continue to serve as a beacon of hope, courage and perseverance", showing disability need not limit life and that, with a little help, deafblind people can achieve to their full potential.