We are circumnavigating the world in a sailboat crewed by people with MS. We are changing the perceptions of MS and showing what is possible, even with a chronic and disabling disease, if we challenge ourselves and work together.
My name is Mikkel Anthonisen. I am a father, husband, sailor and a medical doctor who specialises in Multiple Sclerosis (MS) working at Copenhagen University Hospital in Denmark, my home.
MS can strike at any age and quickly changes the lives, dreams and aspirations of people. As of yet there is no cure, but disease modifying treatments are evolving rapidly giving hope that we will one day be able to stop the devastating effect of this feared disease. When MS attacks , symptoms from the central nervous system develop within hours or days – paralysis, balance disturbance, sensory and vision disturbances, pain and/or mental fatigue. These symptoms will, after weeks or months in many cases, remit but often leaving some disability plus the uncertainty of not knowing when the next attack will strike.
This uncertainty and fear is actually sometimes even worse than the disease itself, especially at the time of diagnosis and the first years thereafter. As a doctor, I too often see how strong men and women end up in hopelessness, despair and depression with a loss of identity and self-confidence.
One day at the clinic a 52-year old man entered my office. He was contracted with MS some three years earlier, had difficulties walking for long distances and had some balance issues. He was depressed, bitter and angry. As a former blacksmith he had built a replica of the famous Joshua Slocum´s vessel “Spray” with the purpose of sailing her around the world. But now his dream was scattered and, in his view, all hope for the future was lost. Seeing this proud, strong man giving up to the disease was unbearable. It just burst out of me: You have to go sailing again! And that is how the idea came to me: I´m going to sail around the world in a sailboat crewed by people with MS. This was two years ago and since then I have founded Sailing Sclerosis Foundation and arranged a lot of sailing activities in Denmark, creating network between the yachting world and the MS world with great success. As one of the MS crew has said: It is as if MS stays ashore when we go out sailing. Everybody has to hold on to something – MS or not. And being at sea working together inspires everybody to start dreaming again with a feeling of: Yes, we can still do it!
This concept is now being brought to the world with the project vessel “Oceans of Hope” – a 67 feet steel boat build for the famous Challenge round the world races. We are very fortunate to have the Biotech company Biogen Idec as our main sponsor and have a number of additional supporters helping us to realise the project.
Oceans of Hope is the torch lighting the message that we must never stop dreaming and never stop living our lives. That we must focus on what is important and create human value and quality of life. No-one knows what tomorrow brings – whether you have MS or not.
Forty tons of steel in the form of a highly capable, safe world-girdling yacht is now five weeks into its circumnavigation. A small professional crew, including myself or another doctor, are helping an ever-changing crew of MS patients on each leg of the voyage and the experience is truly changing the lives of those aboard and the perceptions of those ashore wherever we stop.
On the shorter, coastal legs we often have MS crew who have only little sailing experience, for the oceanic legs we are signing up MS crew who have good sailing experience, with crews already lining up from every corner of the world.
Since leaving our home port of Copenhagen, scheduled stops have already been made in Kiel, Amsterdam, Portsmouth UK, La Rochelle France and “Oceans of Hope” is currently en route to Lisbon, Portugal.
In each stopover we organise Open Sailing Days in collaboration with the local yacht club and MS society plus visits to “Oceans of Hope” for local MS patients with the objective of creating a lasting network between the yachting world and the MS world, so that people will continue sailing as part of their daily life even after we have left the port. This concept of creating a leave behind is already proving to be hugely successful.
We say NO to MS blocking people from adventures and new experiences. We say YES to sailing being the perfect vehicle for proving our beliefs. Being diagnosed with MS is extremely uncool, but the spirit with which patients live with it is incredibly cool and we are inspired hourly by our MS crew members as to what they can achieve and how they achieve it. Being part of Sailing Sclerosis and Oceans of Hope is a life changing experience giving back pride, self-esteem and the feeling of self-efficacy. It is truly empowering.
Our first ocean passage is looming – on the 2nd of August we sail from Lisbon bound for the USA. Our first port of call is Boston, MA on the 7th of September for the world’s largest MS conference – ACTRIMS/ECTRIMS. From September until the beginning of December, we will sail down the Eastcoast of the US with further scheduled stops and events in New York and Fort Lauderdale, before heading to the Panama Canal and destinations beyond around the world. Our circumnavigation will be completed by the end of 2015.
We are very keen to find some American MS crew to sail on board down the Eastern Seaboard – applications can be made and more information found via our website and Facebook pages www.sailing-sclerosis .com
We are also seeking sea-going Doctors to be on board for each of these US legs and we would love to hear from any American Doctors who could help us out – we can guarantee them a truly inspirational journey! Check out the blogs of our MS crew on our website which I think say it all…