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In 2008 Phil was happily living in Queenstown with his wife and two children and loving his job managing a Christian Camp and Conference Centre. That September he was struck down by bacterial meningitis leading to three weeks in a coma in ICU at Dunedin Hospital. When he finally came out of the coma he was blind, deaf and partly paralysed and he began his long, slow journey of recovery in a new and challenging world. This is Phil's story.
It was the quick action by my wife Julia which helped save my life. I had slipped into a coma at home and Julia immediately called the ambulance which took me straight to Wakatipu Hospital. However my condition was too severe for them and they called a rescue helicopter to transfer me to Dunedin Hospital's ICU's ward where my life teetered in the balance for three weeks.
When I finally came out of the coma, my world had changed to a dark and noisy one. I was now blind and deaf and I also had very loud tinnitus in my head, which constantly sounded like a jet aeroplane. While I was in the coma I also came down with pneumonia and had a number of small severe strokes which left me paralysed down the left side of my body and both legs from the waist down. I didn't have any knowledge of where I was or what had happened, had lots of hallucinating dreams through the coma which left my brain all 'jangled'.
I was moved from Dunedin Hospital to the Wakari ISIS Rehabilitation Centre, where I learnt what had happened to me. My wife communicated to me using foam letters which I felt with my hands. It was a very slow way to communicate but I soon learnt the frightening truth. It didn't sink in for quite a while as my body and brain had been through a very traumatic experience. My family came to visit me often. Julia and the children would say, “Dad looks and sounds like a troll”. My voice changed and my face was droopy, along with my eyes and mouth.
It was rather challenging to be in a dark, noisy/silent world with no use of your body from the waist down. My world had changed around me and I could only hug the people I loved the most.
The amazing team at ISIS started working to help me rebuild my world again. An awesome speech therapist discovered deaf/blind signing, which involves touching me on certain parts of my hand to indicate the letters of each word, much like texting, and taught me it. Daily physio helped get me into a wheelchair, giving me a bit more freedom, even if I had to have someone push me. While at the rehab centre I was given the chance to learn Braille through the Blind Foundation and I jumped at it as I realised it was my only hope for the future. It also gave me something to do, as I had many hours of loneliness and darkness. In mid 2009 I was transferred to Lower Hutt Hospital, as a lot of our extended family live in the area, and two months later I was discharged to go and live with my family.
Following our story going on air with TV One’s Close Up programme, Laura Fergusson Community in Hutt City offered us a rental home and the opportunity to be part of their community during the day. In mid 2010 I completed the Star Braille course and I learnt how to use a Braillenote which is a Deaf/Blind Communicator and simply translates text into braille and now use this on a daily basis for e-mailing friends, family, etc. and browsing the web.
In September 2009 I had an operation to install a Cochlea implant. This has helped reduce the loud tinnitus and to also restore some hearing. Currently I am not picking up speech, but I am working hard on it. I attend the gym daily and my body is getting very strong again, I am now strong enough to walk at the parallel bars by myself with no harness on and believe I am going to walk again in the not-too-distant future. Life is challenging, and it is still hard to interact with my kids at times.
The pain medication I was taking, has been reduced, the diabetes that I inherited from the steroids has been kicked into outfield and life is returning to the lower part of my body.
I celebrate life and that my life has been given back to me. I am currently in training to complete the Lake Taupo Cycle Challenge in November this year. My friend, Neil, and I are fundraising like mad to raise $15,000 for the custom made recumbent tandem bike to do it on. Then we will lend the bike to others who are disabled who would love to use it.
Lastly, I would like to acknowledge my awesome God for giving me back my life, the incredible doctors and nurses at both Dunedin Hospital and ISIS Rehab Centre, Hutt Hospital, Laura Fergusson Community for the outstanding work they do, my amazing family for sticking beside me through this 'crazy-amazing' journey, as I call it, family and friends that have been there for us and the Blind Foundation for their extraordinary work. Thank you, everyone for your wonderful support, encouragement and believing in me. I want to make the world a better, brighter place. There is still a long way to go, but I am determined to not let it hold me back.
Thanks for taking the time to read my story. Keep believing and keep the dreams alive, even on the hard days, because they can come true if you only believe!
Phil on his custom-built recumbent tandem bike
Phil (at the rear) and Neil (at the front) out on a training ride in preparation for the Lake Taupo Cycle Challenge in November 2013
If you would like to follow Phil's preparation for the Lake Taupo Cycle Challenge, 'Like' his facebook page - www.facebook.com/PricklyBehind.
Good Luck Phil and Neil!
Disclaimer - The Meningitis Foundation Aotearoa New Zealand promotes the prevention, control and awareness of meningitis. It is not a professional medical authority. The text on this website provides general information about meningitis and septicaemia, not medical advice. It is not intended for use in the diagnosis or treatment of these diseases. Please consult your doctor to discuss the information or if you are concerned someone may be ill.
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