Finding Grace When "Life is Hard"

From my blog, Dreams at Stake

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 always seem to fully appreciate all their much-coveted privileges. They even actually sometimes complained about them. They had too many bills and not enough time. They didn't appear to have quite the same energy and awe for life that children did. They didn't stop to take notice of the small things as much.

Struck by this realization one day as a young girl, I vowed to be different. I vowed to be fully grateful of all the special perks of adulthood when I grew older. I would always appreciate the little things and continue to look at life as being grande, 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 couldnt 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 bad for doing what I had always vowed to avoid, and 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 your average life. This is not the life any of us, even in our worst nightmares, ever anticipated for ourselves.

It is, however, still a life. I once had a doctor tell me that my life could not really even be called a life at all. To that, I must fervently disagree. Who is to judge the value of any given person's 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. And it is true that my dreams, my ambitions, my education, my career and all my hopes and goals have, thus far, gone by the wayside. And that, in any circumstance, is indeed 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 far 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, 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 adoring (and equally adored) 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.

Comments

I cannot stay online long enough to even try to do justice to a reply to what you wrote here, but I wanted to let you know that this really touched my heart......from questioning stuff about why God is allowing this to , well, pretty much everything else you wrote, I can relate to this.......that said, I am not int he same mindset that youa re rt at this moment......I am currently really struggling with feeling like this is in fact "not a life" and honestly I think I would like to have a Dr tell me that, becasue to me it would mean that he actually really gets it....however, I also can see why you disagree with his assessment

I also have to say that I am sick of most people who tell me that I am still here so I still have a life and a reason to hope, etc.....despite my faith I have not been feeling like there is any hope left (though I have certainly had many others times while sick that I have experienced a lot of hope)....anyway, the main reason that people making those comments bug me is that they just do not understand - coming from you, though, someone who really does get it, I can actually see your point and can take what you are saying with a much more open mind and better attitude

so thank you for sharing this
hope you have a wonderful Thanksgiving
 
Thank you for your kind words, Tammie. I know what you mean about feeling like others don't understand, and how that can make their comments more frustrating than helpful. It always feels different when it comes from someone who is going through the same thing you are. I am glad what I wrote resonated with you. I know how hopeless and overwhelming it can feel -- this is an unbelievably enormous struggle we are all facing. It's amazing what we've each individually been through, and collectively as a whole as well. But we are still here, and there is hope, and we do have each other.

Thanks again for your kind words. I hope you have a wonderful Thanksgiving as well.
 
I hope you had a good Thanksgiving.

One of my favorite sayings from an old Chinese oracle is, "The birds and flowers are not greater than you, and they are cared for. Just know that you will have what is right for you." It means we shouldn't worry so much and things will happen in God's time.
 
Honestly, I think its absolutely critical for wellness to keep looking for grace or beauty or happiness. To push aside the problems of illness and make a concerted effort to do that. That's important anyway - sick or ill - as you noted most people have dropped that out - but once you've got the burdens of a chronic illness I think its really important. It takes a effort - it doesn't come naturally - your mind doesn't like it when you do that - but when you're ill and also have disorder that has a screwed up stress response - I think its quite beneficial. At least it is for me.

Thanks for the reminder once again and the beautiful essay (always so nicely done :))
 
Thankyou so much for that LaurelB. I only wish I could write as eloquently as you.
My Gran always said to me "count your blessings", as well as various other things (!) and little did I know how much I would come to rely on that saying.
Sometimes it is very hard to be grateful for what you have; when you are overwhelmed by fatigue and pain, it is difficult to see how fortunate you are compared to others. But fortunate we are that we have the strength of spirit to continue and have hope for the future.
I am counting my blessings now. I am a better person for having this illness than I would have been without it and I now understand that by making a difference to the lives of others (albeit in a small way), I can justify my place in life. :-D xx
 
one of the most beautiful heart-pouring essays i've ever read. thank you for your willingness to share your heart, Laurel.

my heart hurts for those who have been stricken with this illness at a young age. i was 39...so had already given birth to my 3 girls who were teens at the time. tho that was hard...i had been able to fulfill some of my dreams before i became ill...and some even aftewards.

it is wonderful to hear you are holding fast to that dream of childhood...a life-giving one. i pray your new dreams will unfold and become reality as well.

resting...and grateful for grace
 
Laurel, I'm up in Northern Canada (Edmonton) gratefully reading your blog entries, which are exactly the sort of writing I've been needing to hear. I love your honesty in them, and you are a terrific writer. I have to be careful now as I'm reading too much for one day, but I just wanted to read more and more of your thoughts so beautifully composed. Thank you for articulating what I cannot find the words for. Best wishes, Mary
 

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