The Magnitude of Time

My window is open and I can hear the birds singing as a warm breeze brushes against my face. I watch a squirrel sprint up a freshly budded mesquite tree in search of nourishment. My amaryllis plant, sitting by my window, has burst into a bold and colorful blossom with soft swirls of white and pink, as though in some sort of unspoken celebration. Spring has arrived once more.

It's been 10 years now (14 years ill) that I have watched the seasons come and go beyond my bedroom window. Ten springs have turned into summer, and ten autumns have slowly given way to winter. Ten years of passing seasons that could have been filled with work, children, travel and adventure have slipped away from me, never to be retrieved. Ten birthdays of each and every one of my friends and family members have passed by without my presence. There have been many hundreds of unexplored weekends, thousands of missed opportunities and adventures, and millions of small everyday moments, never experienced, forever lost.

As I watch the various budding leaves and cactus flowers bloom into another season, I wonder how to measure so much loss of time. A full decade has gone by as I lay on the sidelines -- forced to spend each day in this tired and lonely room, quiet and immobile. While time escapes me, the magnitude of that time does not.

What would my life had been had I not gotten sick? What would the lives of 17 million others afflicted with this disease have been?

Today is International ME/CFS Awareness Day. For the millions who are sick, for the millions who have lost years of their lives, and for the millions more who will later become afflicted, please take a moment from your day to reflect and remember. If you know someone with ME/CFS, take the time to write them a quick note and let them know you care, and you have not forgotten them. Take time to learn more about this devastating disease and help spread the word to increase awareness. Take the precious time and the blessing of good health that so many ME/CFS patients have lost, and savor it. Savor it not just for yourself, but for them. For all of those who have lost so much, and who so desperately want their lives back.

The Remaining Sunlight

When I first started this blog, I wanted to find a way to tell my story and speak its harsh reality while still being sure to maintain a sense of hope and optimism. My primary focus, of course, was to raise awareness about how devastating and all-consuming ME/CFS can be, and to show that, though the name may be trivial, the disease most certainly is not.

However, I also wanted to emphasize that we are in no way defined by our illness. ME/CFS may ruthlessly prevent us from fulfilling many of our dreams, but it has clearly not taken away the dreams themselves. People with ME/CFS were once healthy, often extremely active individuals. We were going about our lives like everyone else when we just happened to fall ill -- typically quite suddenly from a viral infection, and certainly through no fault of our own. We desperately want to get well in order to have the privilege of once again living our lives to the fullest.

With these ideas as part of my focus, sometimes (particularly when I'm experiencing an acute crash) I wonder if I may give the impression I handle my illness and my circumstances with greater ease than I actually do.

ME/CFS is brutal. It defies description because it is so far beyond any normal experience of exhaustion or sickness. When faced with such a severe level of illness on a regular basis -- day after day, year after year -- one has no choice but to find a means through which to cope. Over time, I've learned to do this by focusing on the positive, maintaining my sense of humor, and looking within to seek out the small moments of grace. I resolved early on in this battle that I would not let ME/CFS destroy my spirit in the same way it had destroyed my body. And on most days, I do this quite well. My spirits remain strong, determined and hopeful.

However, as anyone would, I have a harder time during a setback. As I have previously stated, it can be quite a challenge to remain consistently optimistic when you feel so sick you can barely move. Not impossible, of course, but difficult.

I recently suffered another long-standing crash. This is my life in the last 14 years, and the nature of this unrelenting disease. Just when I feel like things are improving, I make one wrong move or reach too far, and I am back down again. It's like continuously taking a step forward and then falling a hundred steps back.

While my resolve holds firm, I have to be honest in saying this kind of life can test the extremes of one's endurance at times: the constant battle, the repeated setbacks despite your best intentions, the lack of answers, lack of treatment, the misunderstandings, and the countless downfalls from one wrong movement or one tiny misstep.

I once equated the experience of ME/CFS to what I imagine it would feel like, at least to some degree, to be in an abusive relationship.  However, I would presume that a child who gets brutally beaten every time he/she reaches for a cookie eventually learns to stop reaching for cookies, or to seek out other means so as to not get caught. But what if your abuser (ME/CFS) never, for even one second, leaves your side? And what if your cookie is washing your hair? What if you get beaten over and over again just for trying to get out of bed? For getting dressed? For speaking?

When punished so severely and repeatedly for such minor activity, I can't help but get discouraged. As my fellow ME/CFS blogging friend, Alexis, described in one of her recent posts, I too tend to go through stages. The first is anger and denial. After fourteen years and what has to be literally hundreds of setbacks, I am still shocked when it happens. Somehow, I continuously convince myself that each crash will be the last, and that things can only get better. And then I reach too far beyond that invisible line once more, and my health plummets yet again.

At its very worst, I have been barely able to move. I have had more days and nights that I care to recall where every breath felt agonizing; where I could feel the energy it takes just to swallow. The experience can be beyond brutal. "No," I think to myself when it first hits, "this is not happening to me again. I cannot face this yet again."

After awhile, I have no choice but to move into acceptance, and attempt to find new adjustments and changes to help lessen the severity and duration of the setback as best I can. Once the agony lifts even slightly, I am so relieved to be remotely functional again, to not be in almost intolerable physical distress all hours of the day, that I am able to find some grace in that, and thus return to a place of gratitude once more.

Things are thankfully a little better than when this crash first began, though I am still in the process of trying to bounce back. In light of the fluctuations in my health, as well as some possible upcoming activity that will no doubt require all my energy, I've decided to take a step back from blogging for a little while and try my best at taking my own advice and learning to be more patient with what is.

Blogging has been an amazing experience these last (almost two!) years, and I am so grateful for the improved cognition that has allowed me to participate in a bit more online activity. I feel especially blessed by all the amazing people I have met as a result, and the wonderful friendships I have been able to form. The many letters and comments I have received over the years have touched me deeply, and they inspire me to keep writing. However, at this time, I feel I need to focus more fully on my health. I will still be around here and there, just perhaps not as frequently for awhile.

For now, I will leave you with a few photos of some of my most recent bird visitors (click on the photos to enlarge them). No matter how bad things get for me in my small world, I am always so grateful for the song that exists in theirs. They remind me to keep singing even if my song must currently be silent, and to stay focused on what sunlight still remains to me.

Cooper's Hawk
(he was much bigger than he appears!)

Cooper's Hawk

Road Runner (beep beep)

Finch Singing

Finches Munching

Another Finch Munching

Mourning Dove and Goldfinches

House Finch Flying Above Goldfinches

Hummingbird

Desert Cardinal

Gilded Flicker Woodpecker

"Hey, isn't it my turn yet?"

Two Finches Kissing

Finch at sunrise

Birds sing after a storm; why shouldn't people feel as free

to delight in whatever sunlight remains to them?

--Rose Kennedy

Here's hoping there will soon be more sunlight for us all.

What Dreams May Come

As I've mentioned in previous posts, I fell ill with mononucleosis on New Year's Eve 1996. It was this infection that so suddenly initiated what ultimately grew into a diagnosis of ME/CFS. I can still vividly recall counting down the last few seconds of that year with as much hope and optimism as always, excited for what great things 1997 would bring me. I was young and successful; my whole life awaited me. I never anticipated I would wake up the next morning, my health rather abruptly stolen from me, with a continuous decline ahead that would last what has now been 14 long years.

This being the anniversary of my illness onset, the new year understandably brings with it a mix of emotions. While I remain stubbornly hopeful, that hope is now admittedly a bit more cautious in its enthusiasm. I have grown somewhat wiser over the years, and more keenly aware of life's uncertainties. While I continue every day to hope and strive for the possibility that this year finally brings some measure of recovery and/or a cure, I must also be prepared for the possibility that it will not. In this way, my day-to-day happiness is not as reliant on expectations. That is, whatever each day of the new year may bring, I am better able (at least theoretically) to be patient with what is, and at the same time, remain determined and hopeful for the future.

But while my daily hopes have become more cautious, my dreams have not. My dreams run bright, limitless and free. Whether it is this year or next, I am steadfast in my belief that one year, one day, at least in some form, they will indeed come true.

Among many other things, today I find myself dreaming of...

Having the freedom to run barefoot in the grass

Or play in the rain

Going on a picnic

Or spending a day at the beach

...doing cartwheels

Getting my master's degree

And going back to work
Being able to take long, hot bubble baths

....and dance the night away with my fiance
Traveling to far away places

Hiking up mountains

Taking long bike rides
And long, leisurely road trips

Finally celebrating our wedding day...
and our honeymoon...

and having the chance to start a family

Most of all, today I'm dreaming of perfect health;
of breaking free

and shouting to the world with joy:

"Within your heart, keep one still, secret spot where dreams may go."

~ Louise Driscoll

"Dreams come true; without that possibility, nature would not incite us to have them."
~ John Updike

All photos from: weheartit.com

Without a Sprinkle of Doubt: Christmas and ME

The latest edition of Life Skills Magazine has a wonderful bumper edition intended to help raise awareness about myalgic encepahlomyelitis (ME). The special edition, Christmas and M.E., includes an article I wrote about my experiences with the disease and the increased challenges it presents during the holidays. It is entitled "Without a Sprinkle of Doubt."

There's also another special section which contains interviews of several bloggers (myself included!) who have contributed to the magazine in the last year.  I feel privileged to be a part of such wonderful project with writers and fellow ME friends I've long admired. Please check it out! The full edition of the magazine is located at the Discovering Purpose website.

*2016 Edit:  The magazine is no longer available online.  However, you can read a copy of my article pasted below.  Thank you!

Without a Sprinkle of Doubt
 
I remember waking in the early hours of Christmas morning when I was about five years old.  As my eyes opened to the night sky visible beyond my window, I could see the silvery light of the moon reflecting off newly fallen snow. A sense of magic seemed to fill the air.

Unable to wait another moment for the day to begin, I leaped out of bed and ran down the hall, hoping to discover that Santa had once again provided us with a plenitude of much anticipated gifts to open.  And of course, he did not disappoint.  Beautifully wrapped piles of presents lay in waiting, sparkling under the lights of our tree.  I squealed with joy, ran back down the hall and woke my brother.

"It's Christmas!" I exclaimed as I shook him from his dreams. "There are gifts under the tree! Santa was here!"

My brother followed me back to the living room where we stood and stared at the presents in wonderment. There were boxes wrapped in glittering gold, red and green, all bestowed with carefully placed ribbons and bright, curly bows. The urge to dive right in to them was incredibly hard for me to resist, but my brother -- older and thus also a bit more responsible -- reminded me that we had to wait for our parents.  "Let's go wake them up!" I eagerly suggested, to which he then reminded me it was only four o'clock in the morning. We needed to wait a bit longer.

Feeling only slightly defeated, I followed my brother back to his room, where we spoke excitedly about our hopes for what lay under the tree. Would we get what we'd been wishing for all these many months?  Would there be a big surprise we had not anticipated? 

In the midst of our excited chatter, we suddenly heard a very loud thud on the roof.  My brother and I both froze. "What was that?" I asked in a whisper. Could it actually be Santa? Was he still here on our roof?   

My brother agreed that such a sound could only be Santa's sleigh, and I was beside myself with the idea of actually catching a glimpse of St. Nick. I ran to the window and peered up at the night sky, where I saw nothing but snow-covered branches silhouetted by the light of the moon.

Suddenly, I remembered something my parents had always told me: Santa only brings children presents when they are sleeping.  Though he'd clearly already graciously granted us our gifts, I didn't want to take any chances. I ran back to my own room, quickly threw myself under the covers and closed my eyes, pretending to be asleep.

No doubt the loud thud we heard was just some heavy snow falling down on the roof from a nearby tree.  But I can still remember that moment so clearly, and how utterly certain I was that the sound I heard was that of Santa Claus, his sleigh and all his flying reindeer. I believed, fully and absolutely, without even a sprinkle of doubt.

There is something about Christmas day that feels different than any other: the stillness and silence of the morning before all are awake, the hope for dreams coming true, the joy of celebration and the love and unity of family. And there's something about Christmas day, especially in childhood, that makes you believe in magic, in miracles and in endless possibilities. 

As they often do, our holiday traditions changed a bit as my brother and I grew older. We instead began to open our gifts just after nightfall on Christmas Eve, surrounded by delicious food and beautiful holiday music. We would stay up late and attend midnight mass at our local church.  Christmas morning, we'd sleep in and have a big breakfast, spend much of the day enjoying our gifts and each other's company, then have a celebratory dinner later in the afternoon. I still think about and cherish those memories just as fondly as I do the ones from my early childhood. If I had known how few of those Christmases I had left at the time, I would have savored them all the more.

Unfortunately, my life took an unexpected turn after I fell suddenly ill with infectious mononucleosis when I was 24 years old. The infection never fully abated and I was eventually diagnosed with myalgic encephalomyelitis (ME) -- a serious, complex and often incredibly disabling neuro-immune disease.  While cases can vary in severity, those afflicted find themselves facing what can be life-altering and extremely debilitating symptoms on a daily basis.

Having always been rather stubborn and determined, I spent several years constantly attempting to defy my body’s signals and the insidious nature of the disease I wanted so badly to overcome.  However, the more I tried to ignore it, the more it made itself known to me. In the end, my defiance led to a sudden collapse that has basically left me bedridden for over a decade.

Clearly, having such a severe case of ME presents an enormous, ongoing challenge for me.  Once fiercely independent, I now require assistance with virtually all tasks of daily living. Unable to speak more than a few words above a whisper, I cannot engage in lively conversation with friends or family, nor express my thoughts vocally with any real fluidity.  Due to significant problems with sensory overload, I find it extremely difficult to watch TV.  Cognitive issues affect my ability to read and can also affect my ability to write. 

Adventurous and ambitious by nature, I grow increasingly restless as I am forced to spend my life immobile, watching time slowly pass by through my bedroom window.  Even after all these years, I am not accustomed to this kind of life, this stillness and complete lack of vitality.  I continuously find myself over-exerting in my desire to participate in life as much as I am able.  Yet, often even the smallest of activity or interaction seeps in to eviscerate any little morsel of energy I may have, and can set me back for days, weeks or even months.

As a result of these daily health challenges, I am no longer able to participate in many of the holiday festivities that I had for so long enjoyed, nor engage in all the many celebrations that make this time of year seem so uniquely magical. 

I miss the joy of decorating our Christmas tree as I find the perfect spot to place a long-beloved ornament.  I miss the messy fun of making gingerbread men, Rice Krispie treats and other holiday goodies as the sweet smell of freshly baked cookies fill the air with the warm aroma of the season.  I miss attending church to celebrate in song with my community, or visiting with friends as we exchange gifts, share stories and laugh about memories past. I yearn for the chance to see my niece and nephew experience that same wonderment I once had as a child, as they discover that Santa arrived overnight and granted them their many wishes.  I yearn to partake in long-held family traditions, to spend the holidays with my fiance and finally meet his family, and to each year create new memories to cherish.

However, despite what Christmas now lacks for me, Christmas itself is not lacking. No matter what limitations my illness imposes on me, there is no doubt that Christmas remains a day of wonder. Christmas is a day to fully acknowledge and celebrate those we love and hold dear, to unite and have faith in the goodness of others, and to recognize and take stock of our blessings and of the very gift of being alive. 

It's true I don't believe in Santa Claus anymore, of course. I know there is no well-fed, jolly old man who lives in the North Pole with elves and flying reindeer. There is no sleigh led by Rudolph to fly to the homes of billions of children in the span of one night.  But even though we all, at some point, lose that childhood belief in Santa, we don't lose the magic of Christmas.  The magic is in the true meaning of the holiday. It is in believing in miracles.

As I do every day, this Christmas I will be hoping for a body renewed. I will dream of answers to a long misunderstood illness, of new treatments that ultimately lead to a cure, and of a life, once impeded, finally restored. Much like that little girl so full of faith on Christmas morning all those many years ago, I will do my best to believe fully, with the highest of hopes and without even a sprinkle of doubt.

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.

***

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

***

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

***

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

***

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

***

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

***

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

***

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

***

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

***

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)

***

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

***

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

***

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

***

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