Last year we introduced a series of guest blogs from Robert Munns.
Robert is involved with the Oceans of Hope Challenge, which is an adventure like no other for people affected by multiple sclerosis.
In this series of guest blogs, Robert will take us on a journey right from his own diagnosis of MS, through to now, when he is sailing and supporting others.
So, time for instalment number three…
The summer spent dashing around the Mediterranean gave me such a huge boost to the system. I’d almost forgotten about my diagnosis. Getting sunshine on my skin and being so active allowed me to escape, albeit for a short time.
As I write this in the early new year, the current cold and damp weather is a stark reminder of how much my body misses the warmth and the sunshine. I must say that my vitamin D tablets are being well used. It is during these cold and dark months, it is hard for me to function like I used to. This does upset me.
With all this brilliant and physical lifestyle, I still didn’t appreciate how powerful the black dog of MS was.
I didn’t realise how it affected my daily routine; how it was colouring the mood of every encounter. I was subconsciously ‘denying’ or ignoring the fact that the old Robert was not fully functioning.
I don’t want to dwell on this, but during this period of three to four years, I wasn’t physically restricted, but I was restricted in other ways. My ability to be sociable; my ability to function; my ability to concentrate at work and all these daily activities were affected.
It took a part of me away!
With this stupid, stupid disease, a part of each of us is abruptly taken away from us; inexplicably altering our existence!
So, moving forwards to 2014: I’ve now stopped working the summers on Big Smile, maybe for one of the reasons above.
In September 2013, I started work as one of the managers at the marina in Brighton. We had a great team and because of them, it was generally fun to go to work; every day presented new challenges and situations such as operational problems or very awkward customers and it was my job to come up with solutions.
Then one morning in April 2014, we had a visitor to the marina. A visitor that would have a huge influence on my life ever since.
The visitor was a small team form Denmark; they were preparing for a round the world voyage in a sailboat.
It was a voyage that as soon as I heard about it, I was drawn to it.
The organisation was www.sailingsclerosis.org and the unique thing about the sail was that it would be crewed by people with MS. That was me!
This almost chance meeting sparked my imagination and made me look towards something. I HAD to be part of this in some way. Simply HAD to.
From my perspective at the time, it was very difficult to explain. Retrospectively however, it was a life line thrown to me and I didn’t want to let go. I managed to fill out the application pack and sent it off to organisers.
The people responsible were a Danish foundation called Sailing Sclerosis and the boat they were taking around the world was called ‘Oceans of Hope’.
It was a beautiful, sturdy ocean going racing boat made for the British Steel round the world challenge race in the 1990’s. I was smitten.
I spent that summer secretly looking towards whatever part of the world I wanted to go to and sail near. Dreams of the challenge of crossing the Atlantic, or visiting Caribbean islands or simply crossing the channel were a welcome distraction from the current difficulties at work.
So I waited and followed the boat that was sailing around the world on their website www.sailingsclerosis.org. I vicariously experienced the highs and lows of their lives on the high seas. I spent many a night getting to hear their stories and their progress; constantly hoping that they would get back to me.
August, September, October and November came and Oceans of Hope had crossed the Atlantic. It had arrived at New York; been to ECTRIMS at Boston. They had sailed down the east coast of the states and was heading into the Caribbean.
Then one day in December, I got an email from Sailing Sclerosis. One of the best emails that I have ever received!
I was on board! I was actually going to be part of it.
What made it even more unbelievable was where I would be sailing with them.
For the first time in a long time, I was truly alive and felt that I was engaged with what life is about. I was so incredibly happy.
I would be joining Oceans of Hope in the Galápagos and would remain on board until Tahiti. That’s about 4000 nautical miles and at one point, we would be 1600 miles from land.
A truly exhilarating and scary prospect all at the same time. What an amazing time to be alive eh?
The next blog really starts with my journey to meet the boat and my experiences on board. This marks the start of why I started this blog. My relationship with MS and my perspective of it.