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Guest blog: Robert’s adventure with Oceans of Hope… So where was I?

Posted on: June 22 2017

rm-pic-1.jpgIn May we continued the 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, Robert is taking us on a journey right from his own diagnosis of MS, through to now, when he is sailing and supporting others. So, time for the next installment…

Ah yes, deep deep in the South Pacific waving goodbye to the dark clouds of accepting MS into my life....

As I said before, going on this long trip was a challenge for me. I wanted to catch a fish, kill a fish and cook a fish. I wanted to climb the mast and learn how to use a sextant.

None of that happened! instead I went in an odyssey of discovery and acceptance. I wrote and listened. Being in the Pacific heaven that I was inspired me to write the following. ( this is an excerpt from my on board blog which is still available on www.sailingsclerosis.org)

'My future is still very unclear, at the moment, I like it this way....the more time that is spent on this vast ocean, slowly consuming the hours and miles ahead of us, my mind wanders back to the Mediterranean.... mia secundo casa :) I appreciate the wealth of experience and knowledge that my time on board Big Smile gave me.

My flirtation with MS took away this confidence and sent me down a path that maybe wasn't the best available. To the people that I let down during this time, I am sorry :)

I hope to jump back into those Mediterranean waters again soon. I enjoy life at sea, in all forms: For example, making everyone on board feel safe, comfortable and happy, fixing a lunch at anchor, dealing with tiresome customs officials, washing the boat down, negotiating for a berth in an exclusive marina, sourcing spare parts or even just buying the right tomatoes from the local market.

rm-pic-2.jpgThese are all things that I am good at and I really miss doing them. As we draw nearer to our destination. Over 3,500 miles since Galapagos. As the moon has come out from behind a cocoon of clouds to the East of us, I've spent a little time thinking. I'm feeling a lot more at ease. I'm feeling a lot less distracted and unfocussed. I am clearly still battling towards a new section of my life, a section where contentment has to be sought out and pursued with vigor and passion. I will strive to move towards that goal. I do however need to put this MS into my own perspective. At present I think of it as a rat in my flat, hiding under the floor boards. It’s not scurrying around making noise, or coming into my kitchen to eat my food and defecate on my table, but I know it's there.. silently seeking out a space that it can squeeze through and invade my life again. I don’t like rats.'

I promise more tails of adventure next time

Rob

Guest blog: Robert’s adventure with Oceans of Hope...

Posted on: February 07 2017

image1-1_0.jpgIn November 2016 we introduced the first of 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, Robert is taking us on a journey right from his own diagnosis of MS, through to now, when he is sailing and supporting others. So, time for the next installment...

Since being accepted on the Pacific leg on Oceans of Hope, 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. But this trip has been on my mind, right at the front since meeting Mikkel in Brighton marina.

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 realise 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!!!

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. I have useful and valuable skills that will still be there when I return, but for the time being, that is not going to worry me.

So I got on a plane from Gatwick to Madrid, stayed over in a budget hotel for an early flight to Equador. This was the first culture shock of landing in South America, a continent that I had never been to before. Equador's Capitol is Quito, where I landed. I had then organised a room in a family B&B somewhere in the city near the airport. I arrived in darkness and got picked up a stranger who took me into his home. To be honest, I forgot his name, but he cooked me some food and we shared a conversation over a beer and I found out quite a lot about the country and its biggest economic concern... The price of oil and how this black gold and its huge reduction in market price was killing the national economy.

I also learnt about the country's relationship with my destination, the Galápagos.

These islands that have been such an important place in the Theory of Evolution and I had no real concept of the Galápagos apart from David Attenborough programs and glossy holiday magazines.

But when I landed, I was hit by the shock and awe of the opposites and contrasts of this unique group of islands.

Whatever the brochures say; whatever the amazing pictures; yes it's all there in it's amazing technicolor magnificence. It really is!

However what we don't see in the brochures is the small and underfunded country struggling to keep up with the ravaging tourism going on there.

I'm not going to show you the glamorous pictures but a couple of images of the crafty islands fighting to keep up with this "progress".

blog1.jpgThe infra structure was unable to keep up with the thousands of small coaches and mini buses that transfer people from the airport. The main road is a mud track that is constantly in use and constantly being eroded and patched up repaired. It's awful and was truly upsetting.

The place needs a break from tourism. It needs to be left alone for a while to have a chance to responsibly cope with the demand. The country needs to stop chasing the $100 per person tourist tax and come up with some kind of solution. Or they will destroy one of the most
important natural areas of the world.

blog2.jpgSo upon arrival, I found my way to the main town and sort out the boat. She was safely anchored in the main bay. After 72 hours of travel, by foot, by bus, by train, by plane and now by water taxi, I finally arrive on Oceans of Hope! In retrospect, this yacht has given me and so many people since so much hope; she has changed so many people's lives. Such an amazing, amazing yacht and it was awesome, so incredibly awesome to finally arrive. My aims for the whole 4500 mile trip were purely physical, I feel I needed to be stronger and a good influence on the whole crew; I wanted to fulfill three main ambitions:

  • Catch a fish, kill a fish and cook a fish
  • Climb up the mast and scream in the middle of the Pacific 1600 miles from land.
  • Learn how to use a sextant.

You'll find out next time that none of these happened and my trip became an odyssey. You will also meet my fellow crew mates, our Captain and Bosun. An incredible bunch of people who taught me a lot and helped me put my MS into perspective.

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Guest blog: Black dog winters of discontent

Posted on: January 19 2017

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.

brighton-marina-jan-2014-post-3.jpgIn 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.

 

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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.

Guest blog: Robert’s adventure with Oceans of Hope…

Posted on: November 14 2016

Last month we introduced the first of 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, 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 the next instalment…


So following my first blog for MS-UK, I want to continue from where I left off really.

image-1-post-2.jpgI’d been given the opportunity, quite soon after diagnosis to go back to work for an old employer. An employer who was sympathetic to my one sided battle. The battle where MS had won round one. This battle that appeared suddenly from nowhere and hit me in the prime of my life. It scared the living day lights out of me and genuinely locked all doors and sealed all the windows from a normal life that I was very much used to.

This job was as a skipper on board a small motor yacht called ‘Big Smile’. I’d been doing this since 2005 for the same owners. I felt safe and secure with them and they with me. I was confident and happy in living a truly blissful existence, floating around on some of the most beautiful waters in the Mediterranean.

image-3-post-2.jpgAs discussed in my previous blog, it came as a heaven sent coincidence to be asked back in 2009. And for whatever my reasons, I jumped at the chance at this normality again.
I arrived very early in the season, to get the boat ready from the winter layover. This was in a place called Gocek in Turkey (a place that is still very much dear to my heart). I felt slightly out of practice and daunted by the prospect of the challenge of clearing up all the previous skippers mess that he had left.

What helped me was that I was in such a magical country.

I arrived in this small town very late in the evening. It was very warm and the call to prayer that was being broadcast across the town made me feel that I was definitely in another continent, let alone another country.
image-2-post-2.jpgBeing so far away from home and all of a sudden on my own was both difficult and freeing at the same time.
I sat on the boat with mixed feelings of inadequacy, dread and a little excitement. I did not sleep that night, thoughts would creep up on me and fill my mind with questions such as “what are you doing here?” or “can you REALLY do this anymore?” and “what happens when you have another attack?”

The next day, not through logic, but just by putting my fears to one side, I just got on with it. I could do the work physically, I felt that I didn’t have the mental strength to complete such a large task.
Getting a boat out of winter storage involves a lot of different types of work. Some of it requires engineers, outside help and a lot of perseverance on my part. Cleaning the boat from top to toe, inside and out. Finding things that do or don’t work, finding the problem and somehow getting it fixed.
It had been three seasons since I’d done this, but knowing that I was trusted to do this and I had enough time to do it all really helped my ability to just plod on and do it.

At this stage however, every hour and every day the fear and uncertainty kept reminding me of what could happen. Like a big black dog sitting in the corner, casting a shadow over the room and my thoughts.
With all this hanging over me, I still could not discount the hugely positive chance that I had. Taking a great boat to some beautiful places and experiencing some amazing sunrises and sunsets.
The physical activity of course helped a great deal. Having the best swimming pool on your doorstep every morning helped a great deal. Maybe running through some magnificent scenery did a lot to fend off negativity. Eating healthily and heartedly gave me some energy that was sadly lacking.

image-4-post-2.jpgHaving the sunshine and warmth with me all the time helped. Sometimes it was too hot for the black dog who would go down inside and hide from me. I started to realise when this happened and how it affected me. Sometimes I didn’t manage the highs very well, but it was great to experience comfort, a smile without worry or just enjoying the fact that you just laughed uncontrollably. To realise that I could still laugh was very reassuring.

After such a positive experience. A summer of certainty and exploration, I’ve been battling the black dog that sits with me.
Looking back on it, I did not yet realise fully how much of an influence it was on me. It still had too much of a hold over my everyday life. Retrospectively it still had to be tamed.
Next time, I’ll be looking back at how much it needed to be tamed.

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