When Ryan Levinson contacted me a while back, I was taken aback by his situation. A diversely proficient athlete of his caliber, living with with MD for the last 16 years–a diseasethat eats away muscle tissue slowing over time–has been a series of hard slaps in the face, as his muscle mass decreases and he loses the ability to do the physical things that he loves. As an indulgent athlete myself, his situation struck a heart chord. In 2008, a woman named Melanie, on a bus ride in Kiribati to find provisions, gave me a piece of ancient wisdom that instantly changed the way I perceive adversity. She said, “Difficult people and situations should be considered our most precious jewels. They give us a chance to practice our virtues, and become a better person. Each of us are born into uniquely challenging circumstances, but if we choose to use them positively, they can become our vehicle to transformation.”
My life has never been the same since. I have since passed this powerful wisdom along, where it seemed appropriate. Ryan’s situation was one of them, a few years back. He has since gone from ‘fight’ to ‘flight’… and I wanted to share his recent blog entry from http://ryanlevinson.com/.
There is nothing unique about the pain I feel. Given the nature of my disease it’s not even particularly difficult to understand- a mix of shattered ego and lost dreams swirling amongst glorified fantasies of what was and dark anticipation what’s to come. I’ve been here before, many times, it almost feels “normal” now, like my memories of carefree happiness are lost in the mist of epic struggle. I’m taking blows, yelling, fighting, clawing, growling, fire in my eyes, an injured warrior surging forward amongst a barrage of fire and hurt. I’ve never shared these thoughts before because I was too afraid of letting down people that look to me for inspiration and hope, that sponsors would leave, that it would hurt my “brand”, that I would loose opportunity, connection, and purpose. I was afraid of loss because loss is constant in my life. Not just loss of muscle but the resulting loss of ability, connection with friends, peers, activities, identity, and ego. For most of my life I’ve been defined largely through my physical actions- as a surfer, athlete, first responder, lover, maybe a bit extreme at times but capable and strong. Now I sometimes struggle to hold up a toothbrush.
Over the last few weeks my arms were hit especially hard. My wetsuit sleeves now hang loose around my biceps. I started noticing white stains on my t-shirts and realized they were from deodorant because I’m too weak to wing my arms out when I pull the shirts over my head. It’s getting difficult to hold my left arm over shoulder high (I lost that ability in my right arm long ago). I don’t know what’s next. The only certainty is that the loss will continue. But so will I…I once wrote that I’m screaming within, like a captured animal slamming itself against the walls of its cage. I did not yet understand that the pain I feel is a thread of common experience that connects every person in the world, past, present, and future. Pain is universal, and that understanding is the foundation of compassion. Now I realize that my loneliness, self-pity, feelings of injustice, and resulting pain comes from contrasting what I think I am with what I think I should be. It’s my ego begging for attention, trying to convince me that I’m somehow special, uniquely deserving, that things I cannot have matter above all else, and that without them I am somehow a lesser man, a failure. But then there are fleeting moments when I feel almost translucent, like I’m stepping back and experiencing each moment as they unfold, letting my ego chatter away in the distance. During these times I feel like an integral part of something much larger, an infinite timeless dance, an incredible universe and everything in it. The best way I can explain the feeling is pure love. So I’m sitting here, sweating in the summer heat, eyes watering with tears of gratitude, feeling swept away, relishing the adventure. Remembering that this largely began with an email from someone I had never met. A woman named Liz Clark. There is no easy way to explain Liz. She graduated college, purchased an old but strong 40’ sailboat, fixed it up, and spent the last six years exploring remote areas in the Americas and South Pacific, often alone, while sharing her experiences and insights in her incredible blog.
Liz’s writings were the main inspiration behind my first post for Outside Online when I wrote, “surfing is not about your ability to maneuver a board, but rather it is about how completely you can experience a moment.” I sent Liz an email with a link to that article, thanking her for the inspiration. Her reply stunned me. The level of understanding and compassion in her message changed my life. From reading one short article Liz knew me better than I knew myself. Or rather, she knew my suffering. In her email Liz wrote about impermanence, ego, challenge, perspective, and choice. She suggested books to read and things to practice. Her light was blinding. Liz closed the email with a quote from Albert Einstein: “A human being is part of a whole called by us ‘the universe,’ a part limited in time and space. He experiences himself, his thoughts and feelings, as something separate from the rest- a kind of optical delusion of consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and affection for a few persons nearest to us. Our task must be to free ourselves from this prison by widening the circle of understanding and compassion to embrace all living creatures and the whole of nature in its beauty.” Liz’s message was the catalyst that crystalized many thoughts swirling through my mind. I now realize I built my own cage and I hold the key! I’m back on a path that was interrupted when I was diagnosed with Muscular Dystrophy 16 years ago. I now have an opportunity to sail offshore, to explore the last true wilderness, a place where I will succeed or fail on my own merits, where there are no preconceived notions of what I can or cannot do. Naoma, a beautiful 38′ Ericson Sloop is resting in her slip at Harbor Island West marina waiting for me to come aboard and set her free. I’ve spent the past four months learning her systems and preparing her for offshore use.
At sea I am a part of the surging waves or mirror glass water, the strong wind or stifling stillness, the blazing sun or inky darkness, the incomprehensible depth of the water and soaring height of the sky, the infinite horizon, the salty air, and the endless motion. At sea I am a warrior, a monk, a student, and a saint, simultaneously reminded of my connection to the universe and of my impermanence as a human.Being offshore humbles me. If I fall overboard, a simple slip on the endlessly moving deck, I will likely die slowly, alone, cold, floating in the water as I watch my boat sail away. I wonder what would go through my mind? I am now too weak to do a pullup or even hold up my arms, what will I do if I need to climb the mast or reach overhead to make a repair? As my legs and core continue to loose strength will I be able to balance against the constant rocking and rolling? Will I be able to pull the lines to control the sails? What will I do when I get injured? What will happen as I fatigue? At sea loneliness is the ambient condition. But it’s a good kind of lonely, a healthy kind of fear. Solo sailing is hard. I will often be tired, cold, and hungry with no rest in sight. But I relish the times when it simply feels good, sensuous, exhilarating, rewarding, or even just relaxing and fun. It’s a potent reminder that pain and pleasure are often inversely proportional, that one can not exist without the other. The challenges I face give purpose to pain, opportunities to grow. In a few weeks I will be sailing Naoma to Catalina Island alone, backpacking across the island, then sailing back. The first in a series of adventures I’m embracing with an open mind and eager heart. Muscular Dystrophy is robbing me of physical strength but I’m adjusting, learning, expanding, exploring, and sharing openly, maybe too openly, but here I am, uncensored, naked, in pain and triumph, surface and deep. Catalina Island is just the start. I’m casting off, and I’m welcoming you along for the ride.