This is a forum for GNE Myopathy where I discuss the challenges and insights I encounter on my journey in living with a progressively "weakening" disease. GNE Myopathy is also known as Hereditary Inclusion Body Myopathy (HIBM). I will invite others to share their stories, tips, and comments. I will discuss potential treatments, clinical trials, current research, and resources available for patients with GNE Myopathy.
tara
Monday, June 4, 2012
Allowing and accepting your suffering
After my children’s father, my beloved husband passed away unexpectedly, and later learning that I would become a “disabled person”; I had to dig deep to find the strength to continue living. I have contemplated how I would end my life and hence end my suffering however, where would that have left my 2 year and six year old kids. At that crossroads, which became one of my defining moments I decided to live life with passion. This passion brought me back to a girl of 12 year old where I danced on my parents’ coffee farm in South America. Through dancing on the ‘parapets’ on this farm I have experienced (the 4 M’s) magic, miracle, mystery and the mystical. The 4 M’s as I call them have continued to grace my life, more so as I become more disabled I have incorporated ‘Shantideva’s wisdom into my everyday practice. Shantideva says ”If there is a way to overcome suffering, then there is no need to worry, if there is no way to overcome suffering then there is no no use in worrying”.
It takes some practice in reading this quote.
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