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.

Quotes: Finding Expression Through Others

I love when someone writes or says something poignant that resonates with me, that makes me think of or see life in a new way, or that fills me with a sense of awe and peace. I love when an emotion or insight that I had been unable to express myself is so perfectly articulated for me through the words of others. Whenever I am struck by a person's thoughts or writings, I scribble them down, or type and print them out to place in a special journal I've kept throughout the years. Or, rather, in one of what has now become several journals.

I started collecting quotes long before I fell sick, and continued for many years thereafter. For the most part, however, I am now too ill. It simply takes too much energy to write them down. As I've mentioned before, I can only listen to books on audio, so I therefore have to transcribe what I hear in order to jot them down in my journals. This can often be a bit painstaking, especially if the quote is long.

I do still have quite a few quotes saved on my laptop though, and I thought I'd share a few of those with you today. They are not necessarily my favorites -- just ones I had readily available. As you will see, most of the quotes I collect are ones that I can relate to in terms of illness, struggle, one's inner spirit, and finding the beauty of life despite suffering. I hope some of them resonate with you as well.

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You may not control all the events that happen to you, but you can decide not to be reduced by them.
— Maya Angelou

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You are the knowing, and not the condition that is known.
-- Stillness Speaks by Eckhart Tolle

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Really, no matter how frightened and discouraged I may become about the future, I look forward to it. In spite of everything I see all around me everyday, I have a shaky assurance that everything will turn out fine. I don't think I'm the only one. Why else would the phrase "everything's all right" ease a deep and troubled place in so many of us? We just don't know. We never know so much, yet we have such faith. We hold our hands over our hurts and lean forward, full of yearning and forgiveness. It is how we keep on, this kind of faith.
--Talk Before Sleep by Elizabeth Berg

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Everything is holding its breath inside me. Everything is waiting to explode like Christmas. I want to be all new and shiny. Not this way, every evening talking to the trees, leaning out my window, imagining what I can't see.
--The House on Mango Street by Sandra Cisneros

***

Something in me did not want to give up on life, was unwilling to let go, wanted to fight to the very end. Where that part of me got the heart, I don't know.

Some of us give up on life with only a resigned sigh. Others fight a little, then lose hope. Still others, and I am one of those, never give up. We fight, and fight and fight. We fight no matter the cost of battle, the losses we take, the improbability of success. We fight to the very end. It's not a question of courage. It's something constitutional, an inability to let go. It may be nothing more than life-hungry stupidity.

With the every first rays of [morning] light, it came alive in me: hope. As things emerged in outline and filled in color, hope increased until it was like a song in my heart. Oh, what it was to bask in it. Things would work out yet. The worst was over. I had survived the night. Today, I would be rescued. To think that, to string those words together in my mind, was itself a source of hope. Hope fed on hope.
-- Life of Pi by Yann Martel

***

Life, even at it's simplest level, occurs apparently just for its own sake. It is easy to overlook this thought, that life just is. As humans, we are inclined to think that life must have a point. We have plans and aspirations and desires. We want to take constant advantage of all the intoxicating existence we've been endowed with. But what's life to a lichen? Yet it's impulse to exist to be is every bit as strong as ours -- arguably even stronger. If I were told I would have to spend decades being a furry growth on a rock in the woods, I believe I would lose the will to go on. Lichens don't. Like virtually all living things, they will suffer any hardship, endure any insult, for a moment's additional existence. Life, in short, just wants to be.
--A Short History of Nearly Everything by Bill Bryson

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Be careful reading health books. You may die of a misprint.
--Mark Twain

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I wish so much that you could get hold of the idea of what perfection in this world consists of. It is not like going up a great hill from which we see an ever widening landscape, a greater horizon, a plain receding farther and farther into the distance. It is more like an overgrown path that we cannot find. We grope about, we are caught by brambles, we lose all sense of the distance covered. We do not know if we are going around and around, or if we are advancing. We are certain only of one thing: that we desire to go on, even though we are worn and tired. That is your life, and you should rejoice greatly because of it. For it is a true life, serious and real, on which God's eyes and heart are open.
--Abbey de Trouville

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People go forth to wonder at the height of mountains, the huge waves of the seas, the broad flow of rivers, the extent of the ocean, the course of the stars -- and forget to wonder at themselves.
--St. Augustine

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For attractive lips, speak words of kindness. For lovely eyes, seek out the good in people. For a slim figure, share your food with the hungry. For beautiful hair, let a child run their fingers through it once a day. For poise, walk with the knowledge that you never walk alone. People, more than things, have to be restored, renewed, revived, reclaimed and redeemed.
--Attributed to Audrey Hepburn

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Words fail me sometimes. I have read most every one in the Webster's International Dictionary of the English Language, but still have trouble making them come when I want them to. Right now, I want a word that describes the feeling you get -- a cold, sick feeling deep down inside -- when you know something is happening that will change you, and you don't want it to, but you can't stop it. And you know for the first time, for the very first time, that there will now be a before, and an after. A was, and a will be. And you will never again be quite the same person you were. What is the word for that feeling? For knowledge and fear and loss all mixed together?
-- A Northern Light by Jennifer Donnelly
(this made me think of the moment I first got sick, as well as some of my more serious health setbacks)

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Everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.

When we are no longer able to change a situation, we are challenged to change ourselves.
—Man's Search for Meaning by Viktor Frankl

***

Beyond there is light and music and sweet companionship, but I may not enter. Fate -- silent, pitiless -- bars the way. Fain would I question his imperious decree, for my heart is still undisciplined and passionate; but, my tongue will not utter the bitter, futile words that rise to my lips, and they fall back into my heart like unshed tears. Silence sits immense upon my soul. Then comes hope with a smile and whispers, ‘There is joy in self-forgetfulness.’ So I try to make the light in others’ eyes my sun, the music in others’ ears my symphony, the smile on others’ lips my happiness.
--The Story of My Life by Helen Keller

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You are as prone to love as the sun is to shine.
--Thomas Traherne

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Perhaps the worth of any lifetime is measured more in kindness than in competency.
--Rachel Naomi Remen

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Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says "I'll try again tomorrow. "
— Mary Anne Radmacher

Wonders of Life

An April 2003 Journal Entry

I had one of those rare but stunning moments the other day where I just felt flooded by the utter profundity of this world – at the miracle of actually being alive and part of this infinite web we have yet to fully understand.

Every day I lie in my bed in virtual stillness, yet I am also simultaneously spinning with billions of others on a beautiful, blue-green orb within an endless, incomprehensibly massive universe. And, even more miraculous, I am blessed with the human ability to be fully aware of that fact, and to ponder and be in awe at the meaning of it all.

Sometimes, I look out my window at the beauty of the mountains and trees and all the cacti. Or at the birds fighting for food on the feeder we have provided them. Or the bunny rabbits who visit me from time to time, scurrying about or just sitting there in some kind of quiet reflection I don't fully understand. And I think about how all these things are all distinct forms of being-ness. All these things are alive in various forms of consciousness that each differ from mine. And yet, in so many ways, we are the same. We are all alive and experiencing the world through our endlessly unique roles and abilities, and we all have the same basic, inherent needs and desires -- to be nourished, to thrive, and to simply be as we were created to be.

Other times I just lay with my eyes closed in meditation and try to feel this life inside me, as well as this sickness that has taken so much from me. I let myself go to the middle of it and feel the agony of it to the core. And I wonder at the fact that my internal body actually knows what’s wrong with me, yet “I,” my mind, does not. My body somehow knows what has gone astray, and it is desperately trying to fix it for me or to compensate for it in some way. It is failing, of course, but it is indeed trying. How does it know where to begin, or what to even attempt to do? How does it know and function beyond what I myself can comprehend? Every cell of my body seems to carry its own intelligence, independent of what I define as “me.” How extraordinary is that?

In my questioning, I start to marvel at how incredible the human body is. Do healthy people really consider the miracle of their wellness, when so many things could go wrong and yet rarely ever do? Do they understand it, glorify in it, breathe it in every second of every day? Do they dance with joy at their good fortune? Do they know the tremendous gift that they have been blessed with, and do they appreciate it? I mean, REALLY appreciate it, with all their being?

Sometimes I am just overwhelmed with how amazing life is. How every inch of this universe and every breath we all take is filled with endless miracles and wonder. If only we took note of it all more often. If only I had soaked more of it up when I still had the freedom to dance.

Wildlife Window

It goes without saying that not much happens within the confines of my little room each day.  Surprisingly, though, if you are watchful enough (which of course I am), there's quite a bit of activity that occurs in the small area just outside my window.

As I previously mentioned in another post, I have recently had a new rabbit living in my courtyard. She made quite a snug little place for herself right under my mesquite tree, and for awhile, she would sit out there for hours every day.

It was interesting to me how she, like me, spent much of her day doing nothing but essentially being still. The main difference (other than that she's healthy and a rabbit, and I'm sick and a human) is that she seemed rather content with everything. As far as I could tell, she was not ruminating about her purpose and the overall meaning of life, nor pondering the why's of what was and what could have been. Instead, she seemed perfectly content in her way of life -- patient, quiet and watchful.

And then I realized there was a bit more to her story. One day, while looking out the window, I suddenly saw that she was not alone, and there was a reason she was hanging out in one spot all day. She was keeping an eye on her two newborns, both of whom had apparently been safe in hiding all this time!

How cute are they?  It's hard to see from the poor quality of the photos (taken through a window screen), but there's a lizard with the two bunnies in that last picture. He seemed to take a liking to them, and the three hung out together for several days.

It was fun to watch as the little ones explored their surroundings and became acquainted with each other. One seemed to be rather adventurous, bravely traveling far in his exciting explorations each day, while the other preferred to stay near home and close to his mother.

I haven't seen any of them in a week or two. Perhaps now that the kids are all grown up, everyone may have moved on to bigger and more exciting things. :)

There are quite a few round-tailed squirrels who climb the tree outside my window each day as well, looking for mesquite beans. Here are a couple photos of them perusing the branches for some food.

Living in Arizona, I often see a fair share of creepy, crawly lizards as well. I'm not quite as fond of them as I am of some of the other creatures who roam outside, but they are still interesting to look at from a distance...

And of course, the tree and feeders still attract lots of birds. My favorites are the cardinals and finches. I love how they brighten the desert with their joyful songs and vivid colors. Here is a yellow goldfinch sitting on one of the mesquite tree branches, waiting patiently for his turn at the feeder.

But my most interesting visitor of late was one that actually took me a bit by surprise. I was laying here in bed (that's not the surprising part) listening to an audio-book when I suddenly heard a bit of a thud. I looked up and saw something had perched itself onto the screen of my window. It was hard to make out exactly what it was at first, as it was in a bit of an awkward position:


Contrary to what it looks like, that's not a giant bird hanging upside down from a tree branch. :) He's moving himself around on my window screen.

It wasn't until the bird settled himself and peeked in to look at me that I realized this was not an ordinary bird. It was an elf owl!

Elf owls are named after their small size, often just 6 inches in length. They are the smallest owls in the world. They are also nocturnal, and typically nest in natural tree cavities or abandoned woodpecker holes of saguaro cacti. It is therefore very rare to ever see them in the daytime. In over a decade of living in the Southwest, this was my first glimpse of one. Not that I actually get out much, of course, but still.  It was quite a treat.


We stared at each other for awhile, and I'm not sure who found the other more interesting.

After his curiosity was apparently satisfied, he decided to do a little dance of sorts before flying away.

I've also had another bird who seems to like to peek in on me every now and then. For two days straight, he would fly to my window and seem to look inside, chirp at me, then fly away and come back for another look a few seconds later. This actually went on for hours and hours. It was hard to get a photo of him as he moved around so fast, but here is one of the few I snapped as he was checking me out (or, more likely, admiriing his own reflection). 

Peeping Tom

Anyway, so there you have my most recent excitements in my very non-exciting world.

I'm hoping more excitement is soon on its way, this time in the form of a certain paper published in the Proceedings of the National Academy of Sciences. I could use some really good news.

Primetime Live: CFS and the CDC

The below is a PrimeTime Live news story on ME/CFS from 1996. It covers the history of the original outbreaks in the U.S., as well as the complete lack of a response from the CDC. It is a must-see.

I think what struck me most about the segment was the fact that, though the story aired 14 years ago, virtually nothing has changed since that time. For decades now, the CDC has continuously belittled and essentially ignored this very serious and widespread disease. Meanwhile, millions of those stricken with ME/CFS have continued to suffer and watch their lives slip away, and millions more worldwide have become newly diagnosed. Nearly 30 years since the original outbreak, there are still no viable treatments, very little funding, and a serious lack of answers. How far would we be now in research and treatment had the Centers for Disease Control simply done their job at the onset?


Primetime from Barborka on Vimeo.

You can also see the segment on youtube by clicking the link below:
The CDC and CFS

On a more personal note, it's been a rough month for me with another frustrating crash, and all the subsequent disappointments that coincide with any setback. Things seem a tiny bit better in the last few days, though, and that gives me some hope. Fingers crossed some positive changes are coming soon!

In Fifteen Years

I can remember a day when I was 15 years old, sitting on my bedroom floor and writing in my journal. I was upset about something I can no longer recall; no doubt some kind of teenage-related angst that would seem terribly insignificant to me now.

As I scribbled out my frustrations, I remember stopping for a moment, closing my eyes and leaning back against my bed. I envisioned myself 15 years into the future. I would be 30 years old. I would be an independent woman, capable and confident and free to make my own decisions. I would have finished college and graduate school, and would be well into the start of my career. Hopefully I'd be married, perhaps even with a young child or two. My life would be filled with travel and adventure, as well as the mundane but simple things that make life so spectacular. I'd wake up excited to go to work each morning or stay home to care for my children. My husband and I would be sharing in the pride of our new life together. We'd be celebrating holidays with friends and family in our own home, making new traditions as we created what was sure to become an abundance of cherished memories.

Perhaps, in my somewhat young naivety, this vision of my future was a bit overly simplistic in its perfection. Certainly, my life would not be without problems. However, I still can recall the tremendous sense of peace that vision gave me. Whatever troubles I had in the present moment would then be long forgotten. Life would be sweet, and everything would turn out fine.

Unfortunately, though, that's not quite how things happened. At 30, not only was I not married with children, but I wasn't dating. I was not establishing myself in my career, but instead was forced to apply for long term disability. Far from independent, I required assistance with virtually all tasks of daily living. I had already been ill for six long years, and essentially bedridden for nearly two. I could barely speak above a whisper. The only traveling I did was making short trips to the bathroom and kitchen a few times a day, and those few steps were quite a feat for me (they are steps I can no longer take). The memories being created were not of cherished moments, but of struggle and frustration within the four walls of my small apartment as I lay in solitary confinement.

I often wonder now, what I would have thought had I known in that moment, at 15 years old, the truth of how my life would turn out. What would I think now, if I knew the truth of where my life would be 15 years from this moment?

When I think of that young, sweet, innocent 15 year old girl, full of hope and longing, with endless goals and dreams, I want to tell her I'm sorry. I want to tell her I'm sorry for what she did not know would become so many lost opportunities, so many lost dreams, and so many lost hopes. I want to tell her I'm sorry for all the pain she would soon endure, the endless days of sickness that would grow into months and years without a single moment of genuine reprieve. I'm sorry for the paucity of answers that would be offered to her, the absence of a real treatment for any of her symptoms, and the overwhelming frustrations she would face in battling such an all consuming, devastating, and invisible disease. Perhaps most of all, I want to tell her that I'm sorry I couldn't do anything to protect her.

Of course, I want to tell her, too, that despite things not unfolding how she planned, some parts of her story did turn out okay. She still found love with an extraordinary man. She still has many things she can list as accomplishments, even if they aren't the types of things she'd have previously realized or appreciated as such. She still has countless memories and blessings to cherish, close friends and family, and many things about which she can feel very proud. Even when severely limited, life can still have its moments of joy. It can still be fulfilling.

It's now been eight years since my 30th birthday. It won't be long now before I'm 40. If you were to ask me how I envision my future 15 years from today, I would admit I'm not quite as confident in what I see. Life, I've learned, is uncertain. But somehow I still hold that same vision of myself I conjured up so many years ago, and I remain hopeful it is a vision that will someday fully become a reality. It may come much later than I had anticipated, but it may still come. That 15 year old girl still lives inside me, and she is not yet willing to let go of her dreams.