I have been spending some time thinking about the difference in mind set between the neurologist and the person with MS, and have come to the conclusion that part of the problem is the difference in language used by the two groups to describe the same thing.
As the MS patient we describe the loss of a function, the loss of something we had or were able to do before. Loss is associated with grief and anger, and hope that we may find it again. Loss affects us on a very deep level, particularly when it is cumulative as in MS. Each time we must try to acclimatise ourselves to a new normal, while grieving for the one we left behind. The language we use is emotive as we describe our personal story.
For the neurologists, there are diseases and descriptions such as ataxia, aphasia; files and notes, to develop a case history. Which is not the story of Joe and his battle with his daily life. There is no narrative. Instead it is a catalogue of deficits and disorders. Deliberately depersonalised, the medical professions use language to maintain objectivity and distance from their patients. Emotion is excluded.
For anyone who has studied a foreign language, they will appreciate that it is not just a matter of memorising vocabulary and the rules of grammar. It both expresses and directs the way we think. This has been reflected in the removal from everyday use of words with negative connotations, particularly those used in the past to describe race, colour or beliefs.
So perhaps it is no surprise that we find ourselves on different sides in the debate over CCSVI, staring at the opposition in a form of despairing bafflement. Why can they not understand our position?
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