Tuesday, November 23, 2010

Finding Grace When "Life is Hard"

When I was a little girl, I remember often being told by a variety of adults that "life is hard." This was most typically said when I complained about something I saw as terribly unreasonable or unfair, such as not being able to eat dessert without first finishing all the broccoli on my plate. While this certainly did seem like a rather cruel injustice, I always found this particular response to my protests a bit puzzling. Was life really all that hard? It certainly didn't seem that way to me. Granted, I may have only had four or five years of experience at the time, but for the most part, life actually seemed pretty spectacular. The repeated sagas over broccoli and other such matters were indeed quite frustrating, but overall, I absolutely loved being a kid. Life was new and exciting and full of wonder.

Yet, adults seemed to repeat this phrase rather consistently, as though it were some long-accepted truth that children just needed to learn as they grew older. And while I did come to understand it in terms of dealing with disappointments, struggle, death and loss, I still didn't quite get why even the smaller issues of life so often garnered this response. Why did adults seem to find life so troubling? Like most kids, becoming an adult was something I looked forward to with great eagerness. After all, it was they who got to make all the decisions and have the final say on every single topic of importance. What's not to like? :)

I understand it now, of course. Children can't possibly grasp the wide range and weight of responsibilities that accompany adulthood. Grown-ups yearn to be kids again, and kids yearn to be all grown up.

Still, I remember thinking that adults didn't often seem to fully appreciate their much-coveted privileges. They even actually sometimes complained about them. They didn't appear to have quite the same energy and awe for life that children did. They had too many bills and too many things on their mind.  There was never any time to stop and focus on the little things.

Struck by this realization one day as a young girl, I vowed to be different. I vowed to be fully grateful for all the special perks of adulthood when I grew older. I would continue to look at life as being grand, not hard. I would make it a point to try not to complain about small, mundane inconveniences.

I confess I am not sure just how well I have done with this little goal of mine over the years. If I am honest with myself, I've probably been far less successful than I'd like to admit. For the most part, though, even when I lost sight of the good in any given circumstance, I was generally always able to return to a place of gratitude.

And then... I got sick. Really sick. My life was turned upside down until it essentially came to a standstill. Everything I had just begun to build for myself was slowly slipping away. From my social life, to my hopes of finishing graduate school, to the career I'd enjoyed and had just started to begin. The more I tried to push past it, the more I lost. As the years went on, simple, everyday privileges that I had not even recognized as privileges (the ability to shower, walk, talk, read, watch TV, get out of bed) suddenly started to disappear.

I actually remember once wondering if God had heard that little, silent declaration of mine all those many years ago and decided to respond with this, the ultimate in a series of complaint-inducing circumstances, as some sort of resounding challenge.

No doubt it has been incredibly trying at times, given the downward turns my life ultimately took, to keep that long-ago vow of mine. It was particularly difficult for me when I first became ill. I saw my life slipping between my fingers at what felt like whirlwind speed, and I couldn’t help but be overwhelmed by it all, especially given how little others (or even I) understood what was happening to me.

Clearly, the challenges of this illness are beyond enormous. It has literally and ruthlessly invaded every aspect of my life. There are times, particularly during setbacks (which, given the nature of this illness, are quite frequent), when I want to throw all positivity right out the window. There is so much loss, grief and frustration to grapple with, not to mention the all-encompassing physical distress that can coincide with such a setback. It can be an arduous task to focus on gratitude when you feel so sick you can barely move.

I often dump my frustrations on my fiance during those times, because I know he understands them. Then I feel regret for doing what I had always vowed to avoid -- allowing myself to whine. My fiance assures me I am not whining, but merely coping, and finding my way through what would otherwise be an intolerable situation. I'm not always so sure, though I do recognize the need to share such emotions from time to time and not keep them all bottled up.

Those of us stricken with this disease face every day the kind of loss, disappointments, deterioration, limitations, struggle and physical distress that most people don't experience until they are near the end of their life. Consequently, it is beyond reasonable, even perhaps essential to coping, to often feel complete and utter exasperation, as well as to at times experience deep sadness over what is lost and what we are missing out on, or on all that could have been. This, after all, is not the life any of us, even in our worst nightmares, ever anticipated for ourselves.

It is, however, still a life. Undoubtedly, this is not the road I chose or would have ever wanted for myself, and there is nothing in this world I wouldn't do to change it.  My dreams, my ambitions, my education, my career and all my former hopes have, thus far, gone by the wayside. That is, without question, a tragedy.  But my life, with all its struggles, loss, pain, limits and difficulties, is still a life. It still has value. It still has joy and love and dreams and meaning and hope.

Today, as I write this, I am so grateful for the grace of my young self who, in her innocent, little girl wisdom, somehow knew that I would later need the constant reminder. I would need the reminder to try to stay focused on the positive even in the midst of struggle, to acknowledge my blessings despite despair, and to take stock of the beauty that surrounds me and that always, under any circumstance, remains visible -- even if from afar. Life is simply too sweet to spend it being bitter.

This has been an extremely rough journey for me. It has tried my patience and endurance in ways that, when healthy, I never could have imagined. And yet, through it all, I need to remember that I've still had birds, butterflies, cactus blooms and beautiful mountains outside my window. I've still had the love of my friends and family and my remarkably wonderful fiance. Despite my body's failings, it still has breath. It still holds my spirit, which, though at times shaken and tested, remains strong and able. And it is with that resilience of spirit that I will continue to hold on to the undying faith that someday, somehow, things will get better.

Even now as an adult facing such difficult obstacles, I still don't think I really agree that life is hard. It's our individual circumstances that are hard. It's not being able to live your life to the fullest that is hard. But life itself is pretty amazing.


  1. A beautifully written post Laurel from someone with such wisdom and appreciation for the little things in life.
    I pray that one day you too will be able to enjoy the bigger things of life once again.
    What a wise fiancee you have how you must treasure each other through your terrible ordeals.
    Hugs Joanne

  2. As usual, beautifully written!

    Better to throw gratitude out the window temporarily than the TV remote.

    I did that and have to wait 1.5 weeks for a replacement. Check with me on Thanksgiving to make sure I haven’t slipped into the “Twilight Zone”.

  3. You are a beautiful writer Laurel.

    I often think of you when I am having a 'tough' day; I think to myself if Laurel can be strong I can because I know that my experience of moderate M.E. is nothing compared to what you have been through.

    You are amazing. Your ability to find joy in such challenging circumstances is truly inspiring.

    Of course, we all hope that one day you will be able to experience joy without quite so much challenge.

    Lots of love to you Laurel...xx

  4. I agree with Sofa, you are a brilliant writer...can I post a link to this on my blog? It speaks very well to my struggles of late, coming to terms with all the restrictions this illness has placed on how I live.

    Laurel, you always seem to find a way to look at the positives....that and your gift of being able to put your thoughts into words....and I totally agree with what you say, life itself is still beautiful despite all the struggles and obsticles we endure.

  5. Thank you Joanne, Michelle, Karen & upnorth for all your wonderful comments. You guys (or I should say, gals) are the best. Upnorth -- yes, you can always post a link to any of my posts if you would like to -- I'd be honored! I'm glad you found it helpful in dealing with your own situation. That always is so nice to hear.

    Hope this finds everyone doing as well as can be. Happy Thanksgiving to those who celebrate it, and even to those of you in the UK and Canada and elsewhere who don't. :) I'm so grateful for all my readers/friends out there.

  6. Hi Laurel, great post as usual. There seems to be a lot of these thoughts swimming around for people at the moment. My last blog post is on the same subject - http://cfsngay.blogspot.com/2010/11/i-was-gonna-talk-about-my-recent-crash.html
    and there are links to 2 other people blogs about the same subject from within mine.
    Oh and by the way, it may feel like we are whining all the time but given the gravity of what we face everyday I think we're entitled! xx

  7. Thank you for your wonderfully positive post, Laurel. I feel the same, but I doubt I could have said it as well!

  8. Oh laurel you had me laughing with your tale of being forced to eat brocolli & being told by parents "life is hard", i was taken back to my childhood being forced to eat cauliflower & told the same. Nothing was harder than being forced to eat veg because we had nothing to compare it to! I never understood the line "life is hard" other than a phrase adults use when they don't know what else to say.
    Your so right that you have to express your emotions, have a whinge now & again, it is healthy! And your fiancé sounds very supportive & allow you to freely let go of pent up frustrations. What a star! Your struggles, loss, physical difficulties would test even the most positive of person, you wouldn't be human to be positive all of the time & trying to be positive all the time would cause you to crack at some point & chuck more than positivity out of the window! People say to me "I don't know how you cope", well you just do, because you adapt, your heart may shatter at thoughts of loss but you still know that life is good, the flowers, the sky, the love of family & friends. You may have been tested to what seems like your limits at times but you still come through these things & when all else seems lost you find gratitude in the smallest of things that others don't even notice & take for granted. You are being you, just you, when everything else is stripped away, you have found your spirit & gratitude of life & that is something that many people will go through their whole lives & still not discover. People can hide behind work, tv, reading, keeping themselves busy but when you are faced with just you, out comes the beauty of spirit & that is evident with you laurel. Xxxx

  9. Dearest Laurel
    Yourwisdom, insights, and true love for life continue to amaze me. You are a very gifted writer and I pray some day what you have learned and shaped into sentences, paragraphs and articles will be put into a book for all the world to read.
    Thank you for reminding me how important it is to appreciate my life each day...how I need to treat my body with respect whether I am sofa bound or able to be active like now. You are so right...fromt this day forward I will not speak of life being hard or unfair...but just circumstances. You are so right~ life is pretty amazing on any level!

  10. Beautiful and moving post Laurel. Thank you for being such an articulate voice for those of us who struggle to find ours as we try to live with a such a severe level of this disease.

  11. So well written, good job. I find myself saying, or at least thinking, "Well, life is hard," all the time. But that doesn't mean it still isn't good, and even fun.

    It's still a life - totally.

  12. Yes, it is still a life, and it is your life. With all my struggles and pain I don't think I'd swap with anyone.

    You reach a lot of people Laurel.

  13. Thank you for such a beautiful post, Laurel. I talk about this theme in my book -- that this is just our life, even with all our difficulties. It's just our life and there is much grace all around us.

    You are a powerful writer, Laurel. I wish your writings could be published for many people to see. You can inspire others, whether they are sick or not. Just beautiful.

  14. Wow -- thank you so much for all your beautiful and lovely comments! I'm humbled and touched. You are all amazing. It's a wonder to me how strong our spirits remain despite all we've been through. It helps to have each other as well. Thanks again for taking the time to comment -- I love hearing from you and so appreciate your kind words of support and encouragement.

    And Joanne and VW, I agree -- my fiance is a star! :)

  15. What a great way to end my day. And what a great reminder that our lives are important and blessed. I often have people ask me if my life stinks but I have never been able to say that. It is hard, challenging and frustrating but there is so much good about it as well.

    One of the greatest blessings for me this year, Laurel, has been getting to know you. You are on my Grateful List that I will think upon tomorrow.

    Happy Thanksgiving (again)

  16. Hi Laurel. :) I'd just posted my blog entry at the phoenix forums when I saw your new post there. I can't help but feel that we both wrote about very similar things today.

    I'd written about the people who find the courage to live no matter the odds against them. And how I have found kinship with them on this road I now walk.

    I was very surprised tonight to find that you stood beside me upon this road, within touching distance across these miles.

    Big hugs, Lisa

  17. What a lovely lovely post. Thanks!

  18. What a great post, you are a great and articulate writer. It reminds me of when I was little and I was crying because I had hurt myself in some way, and it really did hurt. My dad laughed at me and said that things hurt much more when you are grown up, meaning I should be braver now in preparation. I was stunned (as it really had hurt) and I had no idea how grown ups coped with so much pain! But on reflection I think it has actually been the other way around, despite being in more pain these days. As a child everything is so much in that moment it is overwhelming! But being in the moment also has the advantages you speak of, I am glad you have not lost that. Me too: It reminds me also that I was often told (before I got ill) that my powers of observation were good. I would point things out to people that they would otherwise miss and they would enjoy seeing them, and the beauty I could see. I think this has stood me in good stead through illness. Life is amazing, I love your last paragraph.

  19. hope is inviting from any angle. thanks for saying it so well. sorry to hear of your struggles. u r a woman of courage. keep on!

  20. From The Great Gilly Hopkins:

    "Nothing's turned out the way it's supposed to."

    "How you mean supposed to? Life ain't supposed to be nothing, 'cept maybe tough... All that stuff about happy endings is lies. The only ending in this world is death. Now that might or might not be happy, but either way, you ain't ready to die... Sometimes in this world things come easy, and you tend to lean back an say, 'Well, finally, happy ending. This is the way things is supposed to be.' Like life owed you good things...And there is lots of good things, baby... But you just fool yourself if you expect good things all the time. They ain't what's regular - don't nobody owe 'em to you. "

    "If life is so bad, how come you're so happy?"

    "Did I say bad? I said it was tough. Nothing to make you happy like doing good on a tough job, now is there?"

    --Katherine Patterson

  21. Hi Laurel,

    I am touched by your post. I have ME/CFS myself, but in a much milder form than you. Still it seems that the same themes come up in our thoughts and posts. I am quoting you in my own blog post on this topic (which is in Dutch, by the way), because you have a beautiful way of writing. Thank you very much. Your strength inspires me.


  22. Absolutely beautifully written. Sending you much love x