Sunday, January 29, 2017

On Finding Purpose

As I lie in this bed, watching the days slip by year after year, I yearn for any potential break in the endless monotony.  Even the simplest of activity can mean so much: mornings when I feel well enough to either watch a movie, color, draw or do something else creative; my short excursions to lie in other rooms for a different view;  the rare but wonderful times when I am able to have a visitor for a few minutes or briefly sit outside and see the bright blue sky above me.  I live for those moments; for those tiny but glorious escapes from what is otherwise inescapable.

It's a strange thing to be so confined, not just in terms of your surroundings, but also in terms of your very nature; of the freedom to live and experience life as the person you once were and still are, but can no longer fully be.  

I've always been a bit of an adventurer.  I love to travel and experience new things.  I am restless and, in my healthy days, I thrived on change.  Ironically, I am somewhat claustrophobic and hate being in small, confined spaces.  I am a loyal friend and feel a great need to help others, to give back and to do my best in order to make a difference in the world.  I am also an over-achiever, often determined to a fault.  I once finished a college project in one week,  only to learn -- upon  turning it in to my bewildered professor --  that it was supposed to take me the entire semester to complete.  

Today, my biggest achievements are often such simplistic things as managing to partially wash my hair, to speak more than a few words at a time as I attempt to interact with a loved one, or to make it across a room and down the hallway in my wheelchair.  And yet, these are not small accomplishments for me.  In many ways, I push harder now to do even the most meager task of daily living than I ever did to accomplish greater feats when healthy.  However, even after all this time, the fact that such minor undertakings can now qualify as great achievements is a reality that is difficult to process. It stands in such stark contrast to who I once was, and to the person I could have been had I not been felled by illness all those many years ago.

Given such limitations, it is understandable that I sometimes struggle with finding a sense of purpose or meaning to this existence.  Whenever I start to doubt my ability to give back to the world, I often think of the following words from Mother Theresa: "Not all of us can do great things. But we can do small things with great love.”

And so, that is what I try to do to the best of my ability.  It is just one of the many ways I have had to redefine my life as a result of this illness, changing my perspective in order to see things on a different scale.  While I may not be able to bond or spend much quality time with loved ones, I can still occasionally send them cards, notes and special gifts to let them know how much they mean to me and that I am always thinking of them.  While I can no longer volunteer at charities that are important to me,  I can still donate small amounts of my limited income to help them in their efforts to raise funds.  Even though I can't attend marches to advocate for more research for the very disease from which I suffer, I and the millions like me can still unite from our beds through blogs, social media and other means. 

I often think of patients who are sicker and even more confined than I am.  There's a young man named Whitney Dafoe who has a very severe form of this disease.  With the exception of hospital visits, he has been unable to leave his room in over three years.  He lives in total darkness and silence, unable to speak, eat or tolerate any kind of interaction with the people he loves. Yet, despite being completely shut out from the outside world in every possible way, Whitney has still made an enormous impact by merely allowing others to tell his story.   

On my worst days, when I, too, can do nothing but lie in darkness and stillness, I inevitably think of Whitney and marvel at his bravery in finding the strength to endure.  If he can get through this every single day, I tell myself, then I can do it too.  And thus, without even knowing I exist, he helps me and so many others in ways he may never fully realize.

Indeed, it is because of Whitney and his father (a world-renowned genetic scientist)  that the first comprehensive study ever done on severe myalgic encephalomyelitis (ME) is now being conducted, providing much needed hope to all who suffer from the disease.   And that is pretty extraordinary.  It is a beautiful reminder to never doubt the power of any individual's life to change the world, no matter how limited that life may be.

I read (or listened to) a book this past year called The High Mountains of Portugal by Yann Martel.  In one section of the story, a man who is grieving over the loss of his wife makes the unusual choice to buy a chimpanzee (named Odo) and take him on a journey with him.  He becomes very attached to this chimp, and their relationship affects him deeply:
"While Odo has mastered the simple human trick of making porridge, Peter had learned the difficult animal skill of doing nothing. He’s learned to unshackle himself from the race of time and contemplate time itself. As far as he can tell, that’s what Odo spends most of his time doing: being in time, like one sits by a river, watching the water go by.  It’s a lesson hard learned, just to sit there and be.”
Indeed it is.  It is a constant struggle to not want to do more and be more, particularly when so much of everyday life remains firmly out of reach.  I must often remind myself that, despite how contrary my accomplishments are to my desires, they are still noteworthy.  Rising above extreme adversity on a daily basis is no small matter.  Those with ME experience a kind of all-encompassing loss that most people don't face until they are at the very end of their lives:  health, career, social life, independence and the basic ability to even care for oneself.   At its worse, some ME patients (as I have) lose the ability to walk and fully speak, while others can even lose the ability to eat.  And yet, somehow, despite it all, we not only endure, but manage to find hope and joy in what remains. And that, truly, is a remarkable achievement.  

In the end, the value of your impact on the world is not measured by its scope.  If you've touched even one life, if you have loved even one person, if you are kind to others and are doing the best you can with what you have, then you are making a difference.  To exist in and of itself is to have purpose.  To breathe, to be fully present in each moment, to show love and compassion in whatever small way you can – this is what gives our lives meaning.  And this is why I no longer doubt that my life, and every life, has infinite value.

And so, as we all do, I learn to persevere and make the best of what is. I find my purpose in what little things I can do, and try to see the quiet beauty that still surrounds me as I slowly learn to “sit and be.”
  
A bird watches the sunset on a saguaro


I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.  – Helen Keller

To know even one life has breathed easier because you have lived. This is to have succeeded. – Ralph Waldo Emerson