Sclerosis Sailing

Oceans of Hope - Sailing Sclerosis. Sussex MS Treatment CentreRobert Munns, who was recently diagnosed with MS, had the chance to sail between the Galapagos Islands with Sailing Sclerosis and has kindly agreed to tell us all about his great experiences on board.

A little about sailing sclerosis for you.

Navigating the world’s expansive oceans is still a great challenge. However, the technological evolution of boats and navigational aids as well as communicational equipment has made this kind of journey safer than ever.

We want to tell the world that disability can be changed to ability, that we will never stop trying to improve life. We want to create quality of life and value through responsibility and commitment. Sailing around the world is just that, it is hard work, commitment and dependency upon each other working as a team.

We will show everyone that we live our lives to the fullest and that dreams can come true, in spite of having a serious disease. We’ll be saying, “Yes, we can still do it!”

Between 2004 and 2010 I was skipper on board ‘ Big Smile’ extensively cruising the Mediterranean Sea. During this time i was very rarely 50 miles offshore, so the thought of being 1500 miles offshore with Oceans of Hope us both very exciting and scary!

The timing of Oceans Of Hope coming into my life was perfect. The team turned up at Brighton Marina on a fact finding visit. i was on duty as Marina Manager that day and was immediately inspired. Now, eight months after that first meeting I have just given up work to be part of Oceans Of Hope’s adventure.

I was lucky enough to be invited to join the boats circumnavigation between the Galapagos Islands and Tahiti. This was to become a 4000 Nautical Mile adventure that I would never forget.

Sailing Sclerosis has re ignited a passion for adventure and new experiences that had been quashed since my first episode and subsequent diagnosis. Life is too short to be paralysed by the uncertainty that comes with MS. Oceans of Hope has given me the inspiration and belief that anything is possible again.

Since I visited the boat in Portsmouth I have really changed my attitude to life again. It’s an opportunity for expanding outside of my comfort zone once more. Since my last year as skipper of MY Big Smile, I’ve not really been the confident Robert that I used to be. It’s been a real boost to have this goal to look forward to and plan for. For those of you reading this blog that know me, planning for things is not my strongest attribute.

Since having made my mind up last year, I have been more relaxed with life and happier to make decisions. One of these decisions was to go and get another MRI scan to see how my brain was doing. Since seeing the additional scars/lesions I realised life is far too short to waste time NOT crossing the road for fear of being knocked down. I now appreciate how paralysing this state of mind can be. It’s very simple… I can walk, I can talk, I can jump and I can swim. Most importantly, I can still swing a golf club!!!

Since having this goal of being with OoH, I’ve realised how my family and friends have watched me succeed and fail at life, love and all the other stuff too. For these highs and lows, they have always been there for me. This was most apparent when I had my attack in 2008. I do not know where I would be if they weren’t there for support, comfort, strength or just to make me laugh when I thought I could not.

Having this opportunity is amazing for me and is unbelievably timely. I have given up my job for this and have no idea where my path will lead afterwards.

So… Live the day today, tomorrow will come soon enough:  Catch the fish, cook the fish, eat the fish.

During the early stages of our journey from the Galapagos, I have been very fortunate to hear everyone’s own personal stories, not just when they were diagnosed, but how their lives have brought them to this point.

On board, without the pressure of commerce or time or personal commitments, we have had the time to listen to each other and ask questions. To learn, to be patient and empathise with others who at some point I will have to rely on.

Getting back into the swing of being on a boat is giving me great pleasure and strength. I do not want to sit around doing nothing. I want to make food for people, talk and joke with people and make my time here even more important. If this manifests as fantastic memories or simply just making the most out of every hour and going to sleep knowing that I have achieved what I could during that day, then so be it.

However, I am angry with myself. From 2008, I have not really been my whole self.  As I mentioned before, the results of inactivity are: no memories, no sleep and the awful feeling that life is no longer in my control. Like someone who has broken down on the side of the motorway in the rain, helplessly watching others whizz by, carrying on with their lives. People who still have some kind of control in their lives, going on journeys, going to work, travelling to meet loved ones etc. Looking back on it, I’ve kind of been feeling that way.

Is this time away from home the time to be angry with myself for not seeing this and not totally accepting it? Get it out of my system? Or just to put that in a box, close the lid and forget about it?

Who knows, either way it is time to properly look to a future, not to the past.

Time to dream of new dreams, not to dwell on reasons why I should not.


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