Moebius Syndrome

Courage, your inner voice and Steve Jobs – and how that does actually apply to life with Moebius syndrome

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary. -Steve Jobs, 2005

This quote, shared today after the world learned of Steve Jobs’s passing, really resonated for me.  As someone living with a rare disorder (or multiple rare disorders, as with me) I think you really learn to trust yourself, trust your intuition about things both physical and emotional.  I think I learned those skills early, almost by default.  I clearly remember in preschool going up to my teacher and saying “I have an ear infection”… and I did! (I think I also remember that because as a consolation for having to leave I got moved up to the “allowed to ‘read’ instead of nap group”)! 

Having courage is difficult for anyone, but I think it’s especially difficult for those of us who may look or feel different and carry the baggage from life with a medical condition.  But at the same time, I think having to be strong and deal with a lot of stuff other people do not make it easier in some ways to have courage in difficult situations and move forward.  I think it’s a truly mixed bag, but I cannot imagine having learned what I learned about life without being born with Moebius syndrome.

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