Mads Tobias Hansen is 36 years old and sailed with Oceans of Hope from Copenhagen to Kiel in June 2014. Mads helped with logistics, provisioning and preparing the boat for departure in Copenhagen and after his return from Kiel he took the initiative to set up 'the Selection Committee' and 'Friends of Oceans of Hope' allowing others than MS crewmembers to be an active part of the project. Mads blogs about Oceans of Hope’s anniversary and the personal journey he’s been on during the first year of the voyage culminating in the acquisition of his own boat. This was originally an interview that has been rewritten as a blog.

I had made the decision to buy a boat. I could afford it and now was the time. The day I went to collect the key was a Monday and it simply hadn’t dawned on me that it was June 15th – the anniversary of Oceans of Hope’s departure from Copenhagen. I only discovered it later that day when I saw it on facebook. It was so surreal and it stirred up memories of all of the acts of destiny I have experienced since I first heard of this project. I read about it two years ago in the sclerosis association’s magazine. I never read that magazine, but on that day I did for some reason. I decided to go to an information meeting even though I knew very little about the whole thing. Normally, I’m someone who likes concrete things, and this project was quite visionary and abstract, so it should’ve sent someone like me running for the hills, but somehow I connected emotionally with the project and stayed on. Since then I have met the people that I needed to meet and circumstances have allowed me to play the role in this project that I needed to play – helping to turn the dream into reality.

The most important thing that Oceans of Hope has given me is a metaphor to help me cope with having MS. Now I deal with my sclerosis as if it were my own personal weather forecast, which has changed my relationship with the disease completely. I take it with me on board the boat. Some days the weather forecast is bad and it’s necessary to stay at home, other days the wind is just right and there’s no time to waste, I just get out there and make the most of it. There’s nothing to discuss, it’s just the way it is. I had quite a rough MS attack last winter and the timing wasn’t good, I had a lot of plans and commitments that I had to cancel, but it’s just the way it is. It’s the same with the weather, you have to accept it and work around it. With that attitude I don’t allow my thoughts to go into dark places and the bad days don’t take me out of the game, I accept them and wait for the sunshine to break through.

Oceans of Hope and rebuilding your spine
When I went on a taster sail organized by the Sailing Sclerosis Foundation in 2013, I was hooked on sailing immediately. I had sailed by myself before, but this was different. It dawned on me how sailing provides a nature experience where everyone is on equal terms. There’s no special consideration for people with a handicap, nature is ruthless and at sea we’re all equal. The other thing I fell for was being part of a community working together for a common goal, which allowed everyone to find their proper place. If there’s something that I’m unable to do, someone else will be able to. Being part of a crew in that way made me feel a part of something important. I had had difficulties finding a sclerosis community, but instead I found a sailing community. Before I was an individualist and I took care of myself, but this gave me a whole new experience of what it means to be a team. We all deal with our sclerosis the same way that we deal with the weather forecast, but we talk about sailing instead of talking about the disease and when we do talk about the disease it’s in terms of sailing. Also, I really appreciate that I have met people who were further ahead in their personal growth and ability to cope with life with sclerosis, because I have learned a lot from them. Another thing is that my balance is better on a boat then on land, which still puzzles me.

I think what I have discovered on this journey over the last year is that you can exist as a man and as a human being and assert yourself and have an impact despite of having MS. You can rebuild your spine and stand up straight and say, Hey! I’m going to buy a boat! Sclerosis came and knocked me over and the only way I could get up again was by finding a new identity – and I found that in sailing and in nature.

For me it was necessary to stay committed and fascinated with the project and the boat in order to build myself up again. Here I found a community where I could use my qualities and where they were needed and appreciated. My help was needed on the project again after I disembarked Oceans of Hope in Kiel and I stepped up to the challenge. Someone reached out a hand to me and I grabbed it. It’s just as important to appreciate the people who reach out a hand as it is to appreciate the ones who take it. If we’re enthusiastic about our own lives there’s a good chance that someone will come along and give us a hand. We saw that with our sponsor, Biogen, as well. They were willing to sponsor the project and stand back and let things unfold on their own terms. This was completely necessary to give the crew a human experience, to put the human being first.

Hope is crucial
Apart from sailing in my own yacht club in Hundige (SKB) I also sail on a regular basis with other Oceans of Hope crewmembers in Rungsted (KDY). It’s very satisfying to follow a project from beginning to end, to meet newcomers and welcome them into our community. We share a mutual love of sailing and we carry the experience of being on the boat inside. It has meant something to take that chance and dare to be part of such a journey and that has created a strong bond between us. When you try to explain to others what a huge accomplishment it is to go on that type of voyage when you have sclerosis, they’re not really in a position to understand. There’s this mutual understanding between us crewmembers with MS, we all know exactly what it means and we can tell if someone is having a bad day and know what that feels like. We share something special and that’s why my new boat is an open boat – everyone’s invited to go out sailing with me.

The thing about this project is that it gives you the opportunity to learn how to handle new challenges when you’re faced with having to reinvent your identity. For me there was no knowledge about this dimension of MS to gain in treatment centres or patient organizations. It’s about building up projects and getting people involved and what you take away from it cannot be replaced by medicine or research. Hope is crucial because it’s the first thing that starts leaking when you’re diagnosed. Everyone who contributes to creating hope will have a good balance of costs and benefits because they change lives by giving back hope.

Mads and his new boat

Departure from Copenhagen

Mads and his crew

Arrival in Kiel