June 12, 2010
“Life is a shipwreck but we must not forget to sing in the lifeboats.” ~Voltaire
Most people are familiar with the Holocaust and the genocide of Hussein. The Killing Fields was a movie depicting the torture and slaughter of one million Cambodians. Why did I choose such graphic horrors to open this post? Stiff Person Syndrome, as with any disabling neurological disorder, is an horrific diagnosis, sometimes a living death by choice. Negativity, anger, and bitterness become embraced attitudes of entitlement–an emotional death.
I experience occasional bouts of negativity in the natural grieving process of what I have physically lost to SPS. I choose not to dwell there. I can’t carry a tune, but I try to be one who sings in the lifeboat. Stiff Person Syndrome is the dictator, but I have found some support groups to be ‘killing fields.’ Negativity, blame, anger, and pity are encouraged and justified. By choice, many die an emotional death cheered on by comrades of commiseration. Victimology is a black swampy quagmire, sucking each step with defeat, drowning in self-pity.
I understand the necessary need to grieve. Many individuals with SPS have been an encouragement and inspiration to me, conquerors, not conquered. Under some of the syndrome’s worst conditions, I hear them singing in the lifeboat.
“Oh, my friend,it’s not what they take away from you that counts. It’s what you do with what you have left.” ~Hubert Humphrey
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