While reading the various CCSVI sites and fora, I came across a lovely analogy today that I'd like to share with you. Perhaps because I love the sea and sailing, I found it resonated deeply with me, but I think it has something to say to each and everyone of us.
It is from ThisisMS, posted by a Capt Boo:
Reading some of the more recent posts on this forum, I am reminded of a similar experience 8 or 9 years ago. I had sold my business and decided I wanted to go sailing, although the most sailing experience I had was with a Sunfish in high school. I joined a couple of sailing related forum sites. I had a lot to learn. Mixed in with the helpful posts that furthered the conversation and help enlighten me were the few that immediately responded by telling the helpful poster that they had no clue what they were talking about. It turns out that these posters had never actually done a whole lot more sailing than me. They were content to sit on the dock and tell other people how they should manage their lives. I ended up restoring a 25 year old boat and spending the next four years sailing the Caribbean in a 36' sailboat having the time of my life, sailing from Texas to Venezuela and back. Probably would still be there if MS had not entered my life.
My point is, you can either sit on the dock and pontificate or you can go sailing. Sure, actually crossing oceans is more dangerous, but it has greater rewards and as Reese Palley says, "There be no dragons." ......
It is a common phenomenon in sailing circles that many would be sailing adventurers never go, because conditions are not quite right. The weather is not perfect, it's too expensive right now,or they want to do just one more year at work, before they retire, sell up and go sailing.
They sit by the dock, gazing wistfully into the sunset, watching others come and go. Or, from the comfort of their firesides, criticise, citing the examples where things went wrong. Where a ship foundered, or the perfect storm that brings disaster, ignoring the thousands of boats that sail our seas safely.
But there are many who have cast off from the dock and are having wonderful experiences, often on a shoestring budget. They prepare their boat the best they can, and make sure they have the knowledge and wherewithal to deal with most situations and then they go.
So with CCSVI.
The time has come for us to cast off from the dock. Enough talking. Let's get on with trials, but ones that compare like with like. But at the same time as the deeply scientific, we need to consider the human element of multiple sclerosis. Offer treatment to those prepared to take the risk, but instead of ignoring them thereafter, monitor closely their progress or lack of it.
While vascular surgeons and interventional radiologists investigate and work on the technicalities, there is much for neurologists to do in assessing patient outcomes and disease progression. and there will be many for whom CCSVI is irrelevant, too late or unable to deal with their variation on the disease.
“Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” Mark Twain
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