Hi, I am Neil Barnett, I am 58 years of age and have been sailing on and off since I was 13 years old. Skiffs, dinghys, windsurfers, trailer yachts and on to heavy keelers – to be able to go offshore and also to be able to bareboat charter and for this my wife and I needed to have RYA sailing qualifications. This was all fun and exciting sailing and got me to a place where I could be away from my business and "switch off"! I lived in the UK with my kiwi wife and two children, born in the UK, until 2002.
Underlying all this, unbeknown to me, was this insidious disease, Multiple Sclerosis. It crept up on me slowly over my early 40's and also affected my ability to partake in my other great love, skiing! My legs just wouldn't do what they were supposed to, my balance was deteriorating, I had bouts of blurred vision and I was getting SO VERY tired.
When I was finally diagnosed, just after turning 50, which in fact all happened quite quickly, it was an enormous shock but a bit of a relief as at least we knew what was wrong.
My business in New Zealand has been importing and marketing 26 ft trailer sailers, which kept me involved with sailing, teaching others to sail and provided me with a wonderful leisure pursuit. The Trade Boat Shows eventually became too hard to do so I relinquished the dealership, but did retain my trailer yacht. It is just becoming a little too hard to manage, so when this Sailing Sclerosis/Oceans of Hope opportunity presented itself, I just had to do it and become 'reconnected' with large yachts and crews. With my sailing experience I also felt that I would be a very useful crewmember and be able to help others on board with less experience.
I recognised the Oceans of Hope 67 ft Challenge yacht from the fleet of ten, which sailed around the world the wrong way against the prevailing winds in the late nineties and in 2005 as the BT Global Challenge. These boats also did shortened trips between these times as smaller races with three or four boats and I took part in three races around the UK coast, to Fastnet Rock in Southern Ireland and to the Channel Islands.
When I first boarded OOH in Auckland and met Mikkel and Bertram my first question was, "What was the name of this yacht when she was part of the BT Challenge?" Imagine my amazement to find she was “Motorola” - the exact same yacht I had sailed on 18 years earlier from Edinburgh - Plymouth via London Tower Bridge.
Mikkel often describes sailing as a reconnection with your life and what you are capable of achieving. This opportunity came at a very good time for me, just as I was disconnecting from one of my great loves – sailing. Now I can get out there and prove to myself and others that I am still capable. This is the main perception that others have of those of us with MS - that we cannot manage difficult and strenuous physical things.
I am very much looking forward to joining OOH in Darwin and meeting crew 10 and being part of the whole team on board, working together to get to our destination. I know that I and we will be in the very capable and caring hands of the permanent crew, Bertram and Kristian.
It will be difficult leaving the comforts, supports and routines of home that allow me to manage my symptoms on a daily basis, but I am sure that together we will all sort out these things and fit in together.
OOH has already sailed more than half way around the world and the publicity gained is phenomenal and this can only be of huge benefit to MS organisations and to those living with MS all over the world. Already others are more aware of what those living with MS deal with on a daily basis.
The impact on everyday people of this organisation and what Sailing Sclerosis is achieving is incredible - people I have met and discussed the voyage and plans with have been "blown way" by the whole thing - especially my sailing club and other sailing friends and colleagues.
I hope that by being involved with this "journey" people will understand more what we live with particularly the fatigue. It is so hard to describe to people how fatigued I feel every day. People say "we all get tired", but MS fatigue is something else altogether. Like nothing I can ever remember feeling before MS. My wife understands because she knows me so well, but even she cannot fully understand because she cannot feel it!
This is my journey of reconnection and I really am very excited and privileged to be part of it.
Neil Barnett on boom of Motorola (OOH) 1998
Motorola (OOH) you can see the Name on the hatch cowling