Passing the torch

OoH Jul 30, 2014, by Tessa van den Berg in Yacht

Oceans of Hope is doing it again! It is touching, moving, changing people’s perspectives and maybe even their lives. It is bringing back dreams, hopes and belief in the lives of the people with MS. For me this is the end of my journey. I am proud that I could be a part of this life-changing event. And now the yacht sails on, as it should, creating awareness, sharing experiences. It is needed!

I do not know what it is about Oceans of Hope. I do not know how it brings (back) dreams and belief. But it truly does. I saw the magic again yesterday when the people with MS came back after their taster sails. Again, there was a language barrier but the fire in their eyes spoke for itself. It showed belief, that even with MS we still can do it all!

As an ambassador of the Dutch organisation MS Research I find it very important to create awareness, to share experiences. Well, that is happening around Oceans if Hope. Sailing from Amsterdam to Lisbon I have met a lot of people with MS and their relatives, and 'ordinary' 'healthy' people. It was good to share our stories. To show what we, with our unpredictable illness are capable of. I was touched by the people with MS who felt that they couldn't tell their family, friends or work that they have MS, afraid of their response; afraid of not being seen as a 'full' person anymore. They had to cope with their illness in loneliness. That made me feel so sad. For me, I'm so happy to feel surrounded by family and friends to share my fear when it is needed. To feel they will help me when I need that. But, above all, to share the fun and the energy when I can. I wish that for everybody.

I will be honest, I do not know whether sailing this way, by going around the world, is necessarily good for people with MS. I found it great but heavy and tiring. I am thankful that I could do it. And I do know it gives something else in return: something bigger with mental power.

Being on the boat for almost five weeks now, I still haven't got the answer to what sailing exactly does. There must be something about Oceans of Hope that really brings hope and belief in our future and in our bodies with MS.

Is it the healing strength of being outside? Is it the sailing, where you have to rely on the boat as you do your body? Take care of her as if she is your body?

That you have to keep faith in the wind as your necessary but unreliable energy? Just as our own energy can be so unreliable?
Is it the patience we learn, waiting for the wind just as we need patience for our bodies to recuperate?
Is it the awareness that it is no use to fight the current, but you should just go with the flow? Is it the constant mirroring we experience, being on a boat with a crew with people with MS?
Is it the standing behind the wheel? Steering such a big ship makes us feel in control, whereas our bodies and illness is sometimes hard to get in control?
Or is it the dolphins that jump so happily around us? (Although not in the rain, we have experienced. Dolphins apparently do not like water...)

For some of the crew members it felt as if our bodies fit better on the water than they do on the mainland. Having difficulties walking, having to grab on to things when you are not stable. Or maybe even sometimes having to crawl on the floor is not so out of place on a boat, as it is on shore...
On the main land people look at you, or sadly enough, even judge that you might be drunk.
Being on a rocking boat, it is not so strange being unstable.

Being on a ship with a crew of people with MS we all share a story about being insecure and, at the same time, experiencing life to the fullest! We never know when the next attack will come and which capabilities it will take away. And if it takes away functions, we never know if that will be for good, or if we might get functions back.

MS affects, for example, our ability to walk, to see, to feel our skin, to control our bladders or the ability to concentrate and remember things. So, never knowing what will happen we all are very aware to embrace life, to experience the good moments when they are there. We don't wait to enjoy life, since you never know what tomorrow will bring. It is a lesson my MS taught me. And it is a lesson that didn't make my life bad.

It made me now, for example, grab on to the experience of this adventure and to jump on board. It will have a long term impact on my life that I cannot even fully understand yet.

Somewhere there are parallels between sailing and having MS. There is a Dutch saying about the sea, that it gives and it takes. So does the disease. Sailing is about depending on the wind as your changing, insecure energy. You can only follow the current where it will take you, watch the tides as your window of opportunity. Be patient when rest is needed. You should take good care of the boat as you should your body. And have faith that she will bring you. All you can do is to enjoy the journey, and be satisfied with what is in your reach, at least for that day.

So now the yacht sails on. I'm proud to pass the torch to Portuguese Luisa. Having MS doesn't stop her from being a young, powerful, shining lady. I wish her and the rest of the new crew good energy. In wind and in their bodies that is.

To all the other people that read these blogs, who are in some way directly or indirectly affected by the disease, I wish you all the best. I hope you are able to live and enjoy the life to the fullest. With or without MS, grab the moments of happiness.

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