My name is Ben Rivers and I live in Berkeley, California.
Fifteen 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, 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, infrastructures (or the lack thereof), people and cultures that forms the heart of <i>that</i> story - which is also the story of successfully persevering against very challenging and ongoing odds to live, to live and experience one of my lifelong dreams: to be in, and deeply absorb, the cultures, and lifestyles, and the rhythms of life int he various cultures of, 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.
We all need to, like, totally chill, and just find our own tune, and Groove to it . . . We run around like chickens without heads . . .’Cause we're tryin' to groove to someone else’s tune . . .
Can we just relax, and be in tune with our own tune?! It's stressful to live out of tune with our own song, our own instrument, our own paintbrush, or our quantum theory, or our way of arranging words . . .or way of making love, or way of reaching out from our islands of isolation and connecting with others . . . There are so many different means of expression. ‘Cause there are so many kinds of people...
...And when we're out of tune with our own tune, we go around leaking
(or spewing) stress, instead of sharing our love and the things about us that make us uniquely us . . . Don't worry about other people taking your goodness, or your heart, or what you have in you that is YOUR unique mission on earth to share; ‘Cause nobody can share it better than you!!
It doesn't matter if you're so physically bound up in your own body that you can't move a muscle;
Or so emotionally wounded that you're terrified to get out of bed, and facing another human being is an act so brave it makes the 12 tasks of Hercules look like nothing;
You still have it . . . It's still there, within you . . . that special something that makes you, you...and it's waiting for you to express it through your hands, your movements, your mind, your heart, your voice;
Or through or through a tiny sip of air, that powers a switch, that lets you, with such graceful slowness, express it one letter or symbol or braille bump at a time . . .
Can we, perhaps, find out who and what we actually are? And further, can we then share it with the straightforwardness, the kind of lack of pretense with which the birds or howler monkeys say their thing?
If we can learn the lessons of being more aware — paying attention to attention itself, and the lack of it — this will serve us well our entire lives, and is actually a highly valuable — and useful — skill to have.
As Einstein famously said, the way of thinking — or, as Ken Wilber would say, the quality or level of of consciousness — that got us into this mess, is NOT the one that contains the answers to this mess. This is, actually, a major challenge for most of us — and, interestingly, one which is not the same as, nor bound up in, nor limited to, whatever current context, (or challenge, or suffering) we find ourselves in. If we don’t fundamentally become more aware of where/how our attention flows, and find a way to navigate the ship of our being into "new ways of thinking" — (Einstein), or "levels of consciousness with greater depth and span" (Wilber), the same issues will come back again, and again...on other stages, in other times, on other days. While this seems like a drag, it's actually a blessing from, and the way of, nature: It's evolution presenting us with opportunity after opportunity to "get it."
One big thing Parkinson's disease has taught me, and continues to teach me, is that no challenge is too hard to face. There are two facets to this: First, even the most minor tasks of daily life can present seemingly insurmountable difficulties. Second, I really do face certain health, logistical and financial issues that would be considered very difficult and intractable even for someone with normal body functioning. Yet, the fact of living carries me forward to face these challenges whether I wish to, or believe that I can, or not.
By being forced to grapple with them, I oftentimes discover that my beliefs about what I'm capable of, even with the constraints the disease places upon my capacity to function, are not objectively real. If I can have an attitude of curiosity, exploration and discovery, it is easier (or at least more fun) to do even the difficult things. I make a lot of mistakes, but life seems to provide endless opportunities. So even when I mess it up, there's another chance.
I'm a graduate student in music composition. Taking this step to formally study how to compose is also an admission that "composer" is a big word, and to earn that title, I have a lot of fun experimentation AND hard work ahead of me; and a LOT to learn!!
I'm endlessly curious. I love learning; and further, I love APPLYING what I'm learning.
I also have developed a WICKED GOOD sense of HUMOR...and am (I admit it!), just a wee bit zany :)
My friends have had this to say about me: "Ben is a total MUSIC NUT: He lives and dies for music....He's also witty, curious and open-minded; and will drop everything and come running over if he hears the words 'Rhythm,' "Beauty,' 'Pattern,' or "Quantum Physics.' "
I can be depended on to do things my own way; to look at people and things from an entirely different perspective than you; and to seek out newness and untold depth in things that I - and you - were so 'darn sure we already knew!