Wednesday, July 31, 2013

Introducing Myself


My name is Ben Rivers and I live in Berkeley, California.

Twelve years ago, my life changed in a major way when I, at age 30-31, got Young Onset Parkinson's disease (YOPD). In the space of nine months, I went from having a powerful, athletic body which I was very much in command of, to having pretty advanced YOPD symptoms, including: Significant loss of voluntary motor control in my upper body, along with involuntary hand and arm tremors, frozen facial muscles, fixed stare, difficulty speaking and loss of vocal volume.

Following this, I spent 2.5 years living in Southeast Asia. The entire time I was there (the first 1.5 years of which, determined as I was to be self-sufficient, I took care of and did everything myself--including working--without the benefit of meds or caregivers) I was living with a smorgasbord of YOPD symptoms, including: "freezing up," slow movements, tremors, speech difficulties, "frozen face", involuntary staring, weakness and fatigue.

It is this combined experience of navigating at the same time the inner and outer worlds of battling a major disease (and dealing with significant disability) while living in the context of Southeast Asian landscapes, infrastructure (or lack thereof), people and cultures that forms the heart of my story.

It is also the story of successfully persevering against very challenging and ongoing odds to live out one of my lifelong dreams—living in Southeast Asia for an extended period of time.

I learned many meaningful and humbling lessons from these experiences, including humor, humility and courage that I have chosen to use as an opportunity to deepen my connection with my own dignity. Along with this has come more respect for the dignity of all people.

1 comment:

  1. Hi Ben! I LOVE your "shakin'" post and intro blog. So nice to meet you (I saw your link on facebook). Looking forward to hearing about your journey with PD. Sharing our stories helps a great deal... I especially loved your sense of humor. Keep it up! love, a