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 remind myself that even the smallest of actions, spread over time, can leave noteworthy footprints. 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

Not all of us can do great things. But we can do small things with great love. -- Mother Theresa

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

How rare and beautiful it is to even exist.  From the song "Saturn" by Sleeping at Last


  1. Thanks for sharing, Laurel! As a fellow ME/CFS sufferer, I can totally relate. My limitations aren't as strict as yours but there is still so much that I can no longer do. I especially liked your quote about the chimpanzee :). So true! I think our human brains are hired-wired to be restless, always searching for the next task to accomplish or problem to solve. I suppose in the hunter-gatherer days when you weren't even assured of your next meal, this was a necessary trait.

    One quote that I really like is a poem by Emily Dickinson:

    "IF I can stop one heart from breaking,
    I shall not live in vain;
    If I can ease one life the aching,
    Or cool one pain,
    Or help one fainting robin
    Unto his nest again,
    I shall not live in vain."

    I have been following your blog for the past couple of years and it has helped me persevere through my darkest times with this illness. I am in a bit of a rough patch right now and your latest post give me a much-needed motivational boost!

    Take care and all the best to you,
    Tom (misterquasar from twitter)

    1. Thank you for the kind words! Thank you, too, for sharing that lovely quote from Emily Dickinson. I had not seen that one before; it is very fitting! I am so sorry to hear you are having a rough patch. I hope things improve for you soon. I'm so glad to hear you find my blog helpful -- that means a lot. Best of wishes to you.

  2. Inspiring and spot on, with great insights. Yes, even those as desperately isolated and limited as we are, still have a place and purpose and reason, and the capacity and right to have hope.

  3. Beautifully done, Laurel, as always. Love from your fellow T-town-er.

  4. Beautifully written, Laurel. Your light is shining brightly. If there is a silver lining to this dreadful disease, you are the embodiment. Love to you.

  5. So beautifully written Laurel. We loved getting your Christmas card. Thank you. And don't stop your writing. It is so eloquent.

  6. Thanks Laurel, this was what I needed to read today. By sharing your story you can impact others lives.

  7. So elegantly written, and so spot on. This is not an easy life we lead, and so few healthy people can even begin to understand why. I'll be sharing this with both family, and my many fellow patients who are friends. Thank you for inspiring us to keep going!

  8. Laurel, I love what you have written- your lovely focus on relationships and just "being". So much of this resonates within my own heart. I also am greater believer in doing small things with great love. Thank you for the extraordinary act of love in reaching out and sacrificially sharing from your tiny parcel of energy. I am blessed by it. hugs!

  9. Love to you dear Laurel, you are such a good writer. xo Lori

  10. Laurel, you write with such eloquence and thoughtfulness. Writing is your contribution to the world.

  11. So beautifully written, Laurel. I'm glad I stumbled onto your blog! My ME/CFS is not quite as severe as yours, but I'm often bedridden and certainly housebound so I can relate to most of what you wrote. Thank you for sharing your journey. I look forward to reading more! Gentle hugs

  12. You write so beautifully and eloquently Laurel, this piece really resonated with me and I admire your spirit and determination. Thank you for sharing this, you're not alone and I'm sending my love.

  13. Thank you so much for this beautiful writing. I have shared it on my Facebook page and send it to all my family. I am printing it out so that when Whitney gets better one day he will be able to read it. I wish I could read it to him now. We are all hopeful that the treatment will be found soon that will help everyone who suffers from this horrible disease. Whitney and all of you will be different people due to your bravery and suffering. Love, Janet Dafoe

  14. Beautiful. Moving. True. Powerful. Superbly written.

    Crying with recognition, as I can really relate.


  15. thank you for writing what so many of us experience but can't articulate. i hear you, sister. keep fighting the good fight, moment by moment.

  16. Thank you for so so much for putting into words what I am grasping to say. What you so beautifully write gives me a new angle to view my life and limitations, a new perspective.

  17. Wishing you a better year, Laurel. With love from Scotland.

  18. A lovely post, Laurel, thank you - you have put it so well. I often think "I haven't achieved anything today" and then I have to remind myself about all the little things I have done - like reading a chapter of my book, or putting food out for the birds, or having a bath - and realise that for someone with ME these are achievements and I should be celebrating them instead of fretting about the things I haven't done.

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  21. Dear Laurel

    just wanted to say hello since we haven't heard much from you lately and I wanted to say that I think of you quite often. I have been following your blog for a few years now. And I admire you so much for your courage. In the past few days I have read a lot about Ron Davies and his speech about the metabolic trap hypothesis ... and I am very cautiously optimistic. I am hoping that you are doing well given the circumstances

    just wanted to say hello and lots of love from Germany


  22. You have such a way with words. I read through your blog. I teared up when you mentioned you didn't go outside for 15 years. I can't imagine what you are going through. But yet you remain so positive and hopeful. Thank you for sharing. I hope you can continue to blog again. Would love to hear more from you.