One of the most common phrases I hear from people who have had the CCSVI treatment is "I have my life back". This, along with the sensation of gaining some control back.
This made me begin to think about what MS does to us. MRIs give a picture of lesions in our brains and spinal chords, while functional testing by neurologists and others can measure what is happening to our physicality, but what about "US".
The betrayal by our bodies, which cease to obey even the most basic commands, leaves us uncomfortable in our own skins.
But it is not just this that causes our loss of self. Cognitive failure of varying degrees of severity also chips away at our sense of who we are. The fog that fills our brains displaces all but the most rudimentary thoughts.
It can be deeply distressing for a journalist to lose the grasp of language, to struggle to find an appropriate word. The struggle of a former professor to organise his or her thoughts, to apply lessons learned, to come up wth alternate solutons to problems. To be unable to read a simple story, because each sentence disappears as soon as it is fnished. The parent who can no longer help their child wth the simplest of homework.
With that loss of function comes a decided feeling of loss of self., wth all the distress that entails.
This, the hardest thing to quantify, may be one of the most distressing effects of this disease.
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