Robert Munns was diagnosed with multiple sclerosis (MS) almost ten years ago. Midway through his journey with MS something happened that changed what had become his disillusioned outlook on life: he was introduced to the Oceans of Hope (OoH) project, the sailing initiative that led to the successful circumnavigation of the globe with a crew formed by people with MS.
Since this serendipitous encounter Robert has been a more active participant in his own life, as he puts it. As a mark of his renewed sense of purpose he started coordinating various OoH challenges. One of them is the Croatian adventure that EMSP will be covering in May.
For more about living with MS, sailing and enjoying life read this exclusive EMSP interview with Robert Munns.
‘Fear was the killer’
EMSP: When did you get your MS diagnosis and how did you react?
Robert: I was on holiday in Florida in 2008 and got double vision. This happened for a few days, so I went to the pharmacy, then the eye doctor who took an MRI scan and immediately sent me to Miami hospital. My eyes were now acting strangely, with limited movement. I had lots more tests and, three days later, they diagnosed me in the hospital.
I was away from home, I was scared, but had a very close friend with me to support me. I don’t know what I would have done on my own.
I was a complete mess. I had never been ill or broken any bones, so getting this was so scary. I had only known of one person who had MS and I didn’t want to be like them.
When I got home, I immediately went to see a local neurologist. He turned out to be amazing and helped me with my breakdown. My double vision had almost gone, but my speech was being affected. I also started to get the well-known electric ants up and down my body. This all lasted from October to January, with my speech still being affected in March.
The one thing that I remember most is how quickly I fell over the edge into the black hole of uncertainty and fear. Truly the scariest few weeks of my life. For me, fear was the killer.
Back to life
EMSP: How did you decide to get involved with Oceans of Hope?
Robert: Some five years from my diagnosis – after spending a lot of time not being able to commit properly to life, love and family – I was working at Brighton Marina as one of the managers there.
One day the team from Sailing Sclerosis came in to take a look around to see if the Marina was a good place to stop early on in their circumnavigation.
We chatted and I hoped that they would come for a few days to Brighton. After meeting them, I investigated their plans and was immediately taken. I had found something that I wanted to be part of. I could not stop thinking about it. So two weeks later, I called them up and said that I wanted to be part of the circumnavigation.
This was a real milestone for me and my MS. I actually wanted to be part of life again.
Oceans of Hope: from Galapagos to Tahiti
EMSP: What does this project mean to you?
Robert: That’s so very easy but also unbelievably difficult to answer. Easy because Oceans of Hope encouraged me to retrieve my identity. It encouraged me to become stronger and put my MS into perspective.
The project made me start to plan and look towards something. This forced me to assess who I was and where I was going. It gave me the chance to run away. It enabled me to shake up my life.
I was lucky enough to be selected to sail across the Pacific with Oceans of Hope. From the Galápagos Islands to Tahiti. Just over 4000 nautical miles (the longest leg of the circumnavigation).
I met a great crew – five people who had MS. The trip for me is documented in more detail on the Sailing Sclerosis website.
My blogs also talk about what was going on in my head.
Oceans of Hope turned into an odyssey for me.
Cakes and perspective
EMSP: Did your OoH experience help you better manage your MS?
Robert Munns: I would say Oceans of Hope gave me a gift, a notional cake. A piece of cake that helped me put it all into perspective.
After I came back from this experience I felt better, calmer and a little more in control of things.
During that summer, I came up with a plan to bring people with MS together and create the environment where they can have a taste of that same cake.
And with the blessing of Mikkel from Sailing Sclerosis, I came up with The Oceans of Hope Challenge concept.
The Turkey challenge
With a little help from some kind and supportive people, it started to take shape and in May 2016 we held our first Oceans of Hope Challenge in Gocek, Turkey.
We ended up with 42 people on six boats, sailing around some stunning places with fun, laughter and comradeship.
I was reunited with some very dear people – Fred, Bertram, Egon, Bernd, Mikkel. We were joined by people from nine countries and, hopefully, some of them got a chance to have some of the cake I got to make for them.
I always say that the Challenge is a vehicle that brings people together to help each other achieve their own form of greatness.
By organising the challenges, greatness is also recreated for my own person. That is vital for me.
Flotilla in Croatia
EMSP: What comes next?
Robert Munns: Our next Oceans of Hope Challenge is in May this year, in Croatia. We have ten boats with 70 people from 14 countries.
This year is the second OoH Challenge. We are trying to improve all the ingredients of the event from communication to implementation. We want to provide a more varied and instructive sailing experience in newer, more comfortable boats with a structured week to give as many people as possible an awesome experience where I hope they can achieve some form of greatness.
It is my aim to give every participant added value to their week and I want to give them 50 reasons a day to not only come back, but to take a new spirit and perspective on life back with them.
For anyone reading this: we have some awesome plans for next year involving sailing in some beautiful places in the Mediterranean and maybe further afield.
If anyone wants to know more, please send an email expressing the interest in OoH at firstname.lastname@example.org
Please also follow our travels in Croatia on Facebook – Oceans of Hope; or on Twitter – @OOHChallenge (Sailing with MS).
EMSP’s External Advisor Bettina Hausmann and young MS advocate Anna Zaghi will also be joining the Oceans of Hope crew in Croatia. They will share their impressions with EMSP on this blog.