Recognition and Reflection

The below journal entry was written in 2001 sometime after becoming mostly bedbound and unable to speak above a whisper. I had lost so much, and had no real means by which to communicate that loss. I was still living in my small apartment then, and at the time, could shower and heat up food on my own. However, doing so took every single tiny morsel of energy I had and rendered me otherwise bedridden. I had no real computer access, as I could not read or sit up at the computer long enough to write mail (I did not have a laptop or portable email device yet). I couldn't talk on the phone or carry a conversation. I had not yet met my fiance. While my friends and family did what they could, geography and my own limitations in communication often left them at a distance. I was essentially alone. It was then that I started to keep a journal.

Journal writing had its own difficulties, however, as I could only hand write a few sentences at a time. Typing with one's eyes closed is one thing, attempting to write by hand with your eyes even partially closed is another. In fact, writing proved so difficult that some of my old journal entries are completely illegible.

I thought I'd share one of my first (and more decipherable) entries with you today, as it expresses some of the loss, isolation and self-reflection that severe, chronic illness so often imposes on us. It also speaks to the undying, inner spirit within, and of the deep desire to have a witness to our experiences.

~~~~~~~~~~~~

June 2001

On most days, being virtually bedridden, I often lay for hours with nothing to keep my company but my own thoughts. I have an incredible need, at times, to make sure I get these thoughts on paper. Not because I feel they are noteworthy insights at all -- in fact, usually they are fairly simple observations. It is more that getting my thoughts on paper seems to legitimate my existence somehow. It makes me feel that my time here locked up in my bedroom for months on end is not entirely wasted, and that, someday when I am well, I will be able to look back and see what was going through my mind while I spent week after week in solitary confinement. Perhaps someday I will read this journal, written in the darkest time of my life, and remember never to take anything for granted again. Perhaps, too, it will serve as a reminder that, even in the worst of times, hope can still endure and there is always something for which to be grateful.

I think, of course, that I also need some form of communication... some way to tell my story, to explain my experience, and to process it all so as to better understand myself and what is happening to me. Having virtually no contact with the outside world, this journal is now my only real outlet.

Cut off from others, I also feel that others are cut off from me. No one knows my daily thoughts, my current hopes and dreams, my joys and sorrows of each day. No one knows the enormous amount of strength and determination it takes for me to get through each moment of this illness. Thus, in this way, I feel twice made invisible, not just by the decline of the body itself, but by the subsequent inability to express myself.

In What Her Body Thought: A Journey Into the Shadows, ME/CFS survivor Susan Griffin describes this need for expression well when she says:

The hope is not just for the healing of the body, but for an emphatic understanding. To be seen. To be known. ...Shaken, left without any way to articulate the nightmare, and therefore isolated not only by bodily trauma, but by its incommunicability, I have felt an overriding desire for recognition.

In my case, I think I'm searching for recognition not just from others, but from myself as well. I think it is impossible to suffer a serious illness without seeking deeper meaning and trying to understand who you truly are, and why you are here.

Despite the multitude of limitations this illness has thrust upon me, I do feel the core of me still remains. Having been stripped of almost all attachments and all the things I once thought defined me, I am often struck by that indestructible sense of "being-ness" inside me that I still recognize as myself. In fact, I see it with more clarity than I ever did before. In losing the healthy body I had always depended upon, the center within me seems to want to emerge more profoundly than ever before. I have such respect for that part of myself, and that part in all others as well, that shines from within.

I am reminded of a short story I read in college called Pale Horse, Pale Rider by Katherine Anne Porter. The story, set at the time of the 1918 flu epidemic, is a semi- autobiographical account of the author's own experience with illness and that precarious edge between life and death. As the main character, Miranda, falls deeper and deeper into sickness, Porter writes:

....There remained of her only a minute fiercely burning particle of being that knew itself alone, that relied upon nothing beyond itself for its strength; not susceptible to any appeal or inducement, being itself composed entirely of one single motive, the stubborn will to live. This fiery motionless particle set itself unaided to resist destruction, to survive and to be in its own madness of being, motiveless and planless beyond that one essential end. "Trust me," the hard unwinking angry point of light said. "Trust me. I stay."

What that inner light, that will, or that undying and untouchable sense of "me-ness" actually is, I don't know. But I silently thank God every single day for its presence.

I have so many more thoughts I'd like to express right now, but so little energy to say it. And yet, such is how it is. I have no choice but to do what I can with what I have. It's all anyone can do.

______________________________________________________________________

Edited August 2011

Recognition and Reflection was originally published in Life Skills Magazine, 5th edition (June 2010). It is being reposted here with permission of LSM. If you would like to receive a free copy of Life Skills Magazine, you can sign up here. Please also check out Discovering Purpose, a blog about creating a purpose-driven life.

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

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.

Illness & Invisibility

Myalgic encephalomyelitis (ME), sometimes inaccurately referred to as chronic fatigue syndrome (CFS), is a serious, complex and multi-systemic disease.  It is often included in the realm of invisible illnesses because, for the most part, patients don't actually look sick.

While the symptom severity of ME varies from patient to patient, the disability levels of those more seriously afflicted have been compared to patients with MS, heart failure, cancer or even late-stage AIDS. Yet, to the unobservant eye, even the sickest of patients who are wheelchair or bed-bound will still appear otherwise healthy.  At least, we appear healthier than we really are.

This, of course, can create misunderstanding, and leaves those who are perhaps less educated about the illness to erroneously assume it's not as serious as it is. The inappropriate use of and association with the name chronic fatigue syndrome further adds to this misunderstanding by belittling the illness and making it sound like we are all just a little extra sleepy. As a result, some patients can actually feel embarrassed to tell people that they have ME and will instead attempt to conceal it from others, only informing their closest friends and family members.

ME is an invisible illness in other ways as well. One of the most debilitating symptoms of this disease is what is called post exertional malaise -- a worsening of symptoms with even the most minor exertion. So, while some ME sufferers may look perfectly normal one day when engaging in some kind of activity, the strain of that activity could end up leaving the person home/bed-bound, and thus invisible, for days, weeks or even months.

In addition, it has been estimated that 25% of ME patients are fully disabled from the disease, and many of those (like myself) are homebound or completely bedridden for years on end. As such, no one sees or hears us. Often, no one beyond our immediate family and friends even knows about us.

To compound this even further, there's also the invisibility that arises from society's response to chronic illness in general. Society typically doesn't look all that well upon an illness that doesn't ultimately resolve or improve. With all of the advancements and high success rates found in modern medicine, there is little patience for an illness that has no clear answers.

There also tends to be a common-held belief within the general public that we are in control of our own health and that, with enough determination, there's nothing that can't be overcome. While this idea can be inspiring and empowering, it can also leave the sick person feeling as though they are to blame for being ill, or that somehow they are doing something wrong -- even if there are no viable treatments available to them. People generally want to hear that you are triumphing over disease, not being beaten by it. They want to hear success stories. The sick person is very keenly aware of this, and many will thus (at least to some degree) keep their suffering to themselves.

Furthermore, the sick will often keep silent on the details of their illness because they don't want to burden their loved ones, nor cause them to feel any discomfort or pain as a result of their own suffering. They want to appear strong, and they don't want to be seen as a nuisance.

Even now after having become bedbound from ME, I find I still often spend a great deal of energy trying to hide the severity of my illness from others as much as possible. I don't want people to worry or feel any discomfort. I don't want to be "that" person -- the type who is always talking about her illness, even though it has become such an all-encompassing part of my life. I want people to see me for me, not my illness. And sometimes I don't know any other way to ensure that is the case without trying to hide, as much as I can, that I'm feeling as sick as I am.

I am writing today of this latter form of invisibility because I've been thinking about it quite a bit after having recently stumbled upon a blog called Notes from Nonsuch, written by a woman named Sara who loves to garden. She also has cancer. Apparently, it's terminal.

In one particular blog entry [now removed], she writes directly and poignantly about how society in general does not deal with illness or death very well. "There is a great silence about the subject, " she says, "and a great silence imposed on the dying."

Sara goes on to describe how, as with sickness in general, it is oftentimes the dying who comfort the healthy, rather than the other way around. They tend to pretend all is fine, tell everyone not to worry, and silence their fears and complaints of bodily pain -- all this to make sure those around them suffer as little as possible. Meanwhile, this can make the patient feel as though they are ultimately dealing with their struggle largely on their own.

Sara also points out that many people will prefer to keep their support at a fairly comfortable distance. Family and friends will of course offer well-intentioned cards, flowers and teddy bears, as well as promises that they will be in their thoughts. And while this is all no doubt generous and appreciated, what many of the dying really yearn for is someone to be fully present with them. They yearn for someone to listen quietly to their story and allow them to express all the fear and pain of their experiences, and to hold their hand through the final stages of the journey.

In today's society, however, the dying are often instead sent to nursing homes and hospices, where it is not uncommon for them to end up dying alone.

Sara talks about how this also applies to some degree to the chronically ill. She writes:

Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks... After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. ...Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

...The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.

I am tremendously fortunate to have wonderful and loving parents, an absolutely amazing fiance, and some loyal and life-long friends who offer me support, comfort and assistance on a regular (if not daily) basis. I am greatly indebted to them for their kindness and compassion throughout these many years. But I, too, have regretfully seen many friends slowly either distance themselves or disappear entirely. While each will have their own various reasons for this (none for which I really blame them), I think much of it has to do with the general unease people feel about chronic illness. As Sara writes, "Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today’s society is horribly tedious. Tedious, because we are all so uncomfortable with it."

I think part of this discomfort is that people don't often know what they are supposed to do to help, and they don't like feeling helpless. ME also brings with it more challenges and complications in this regard than most other illnesses, as we often can't tolerate social visits anyway. It can be hard for some of us to even write or talk on the phone.  As a result, the interaction that comes from someone's well-intentioned assistance can  sometimes actually be more taxing than helpful.  Thus, in the case of ME, some people may keep a distance quite simply because they assume (correctly or incorrectly) that it's in the best interest of the patient.

And then there's the fact that people just don't know what to say after awhile. I recently read (or listened to the audio version of) the book Naked by David Sedaris. In it, he describes how illness affected his relationship with his mother after she'd been diagnosed with cancer:

I'd always been afraid of sick people, and so had my mother. It wasn’t that we feared catching their brain aneurysm or accidentally ripping out their IV.  I think it was their fortitude that frightened us. Sick people reminded us not of what we had, but of what we lacked. Everything we said sounded petty and insignificant; our complaints paled in the face of theirs, and without our complaints, there was nothing to say.  My mother and I had been fine over the telephone, but now, face to face, the rules had changed. If she were to complain, she'd risk being seen as a sick complainer, the worst kind of all. If I were to do it, I might come off sounding even more selfish than I actually was. This sudden turn of events had robbed us of our common language, leaving us to exchange the same innocuous pleasantries we'd always made fun of. I wanted to stop it and so, I think, did she. But neither of us knew how.

There's no doubt that illness is awkward. It changes the dynamics of relationships, and it reminds others of just how fragile life truly is. And perhaps that's really the core of the discomfort: the idea that our health, and thus our lives, could be turned upside down in a blink of an eye, and there may be very little we could do about it. And that leads to some uncomfortable questions: Why one person and not another? What if that happened to me? Could I handle it? Could I cope?

I've had people tell me that, were they in my shoes, they don't think they could find it in themselves to go on. But the thing is, I wouldn't have thought I could handle this either. And yet, here I am. Sick or healthy, our lives are our lives and we all do what we can to deal with the hand that was dealt to us. When illness strikes, most of us find out we are a lot stronger than we ever realized.

I think the important thing to remember when someone falls ill is that they are the same person they always were. Their bodies may have declined, but they themselves remain essentially the same. In the end, the only difference between a healthy person and a sick person is that one just happened to be a bit less fortunate than the other.

Ultimately, I believe what the sick really want is merely to be recognized. We don't want to be known for being sick, but we want to be acknowledged that we are indeed fighting the fight, and we are not alone.

We want some way to be visible again.

"The Sick Child" by Edvard Munch

An Interview

Recently, Robyn over at "How are You?" and Other Dumb Questions contacted me in regards to an article she was writing for her college journalism class. The article was to focus on the trend and impact of chronic illness, and would include interviews and discussions with various bloggers describing their experiences living with ME/CFS.

I thought she asked some great questions, which helped to provide not only a glimpse into my world, but also into the world of both the chronically ill and those who are on the severe end of the ME/CFS spectrum. I requested Robyn's permission to post our interview on my blog, and she kindly agreed. You can find it in its entirety below.

Many thanks to her for inviting me to participate. I was honored to be part of the project! Please be sure to check out her blog, which is linked above.

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Interview:

Hi Laurel,

Thank you so much for getting back to me! I’m delighted that you’ve agreed to my interview. I absolutely understand your limitations, and I am happy to conduct the interview via email.


First, a few basics:

1) Where do you live? With whom do you live?

I live in Arizona in my parents' home. I moved to AZ from Boston sometime after getting mono, but before being diagnosed with CFS.

2) Are you married? I read about your fiancé on your blog—congratulations! What are your plans for the wedding, or are they on hold because of the illnesses both you and your fiancé experience?

Thank you! Unfortunately, we have not yet married. Our wedding is on hold until our health improves. We live in different states about 2,000 miles apart, and we are both currently too sick to travel or pick up and move. Jim was able to fly out here to surprise me and propose, but it was an enormous effort on his part and takes a big toll on his health. So, as much as we'd love to get married now, it will have to wait until one or both of us is feeling much better. Then we'll both be dancing down the aisle. Or wheeling down it. Whatever the case may be. :)

3) Speaking of your fiancé, I understand that he too suffers from debilitating CFS and is wheelchair-bound. Can you tell me a little bit about your relationship and how your understanding of illness brings you closer?

It is wonderful to have a companion who can fully understand this illness and all its complexities, frustrations and difficulties. CFS is a disease so often misunderstood by the non-sufferer, and it's a real comfort to have a companion who can so completely relate. At the same time, it can also be very difficult because of all the restrictions CFS creates for us, and because we both know just how much the other is going through.

But to be honest, Jim and I actually don't spend that much time talking about CFS. We do discuss it of course, but we both have so many similar passions and interests in life that there are always countless other things we want to talk about. That's what I find most fulfilling about our relationship... our connection beyond and despite CFS.

Also, Jim is incredibly smart and very funny. We have great discussions, and he often reminds me to laugh and keep smiling despite it all. I think that's really important. I don't think I could have gotten through this without that reminder. Or without him.


Thank you! Next, I’d really like to know more about your relationship with illness. I know the story of how you first got sick—a serious case of mono complicated itself into a severe case of CFS—but I’d like to know more about its effect on your daily life and your relationship with current doctors.

1) First, the name “chronic fatigue syndrome”—do you feel it describes accurately what you have? Why or why not?

Definitely not, and for many reasons. First, it only focuses on one symptom, and on a symptom that is common in many illnesses (as well as in every day life). Second, many sufferers would not even consider fatigue as their main or most debilitating issue. For me, if I were to list my symptoms in order of their severity, they would be 1) post-exertional malaise (worsening of symptoms after the most minor of exertion), 2) orthostatic intolerance, and 3) neurological problems/ sensory overload. Next would be incapacitating exhaustion, which leads to the other reason the name is so inappropriate. The word fatigue is a grossly inadequate term for what we experience. The exhaustion level is completely outside the normal, healthy conception of fatigue, and I think that is part of the reason it is so hard for people to fully grasp. It's much more about feeling horribly sick than it is about feeling tired. So, the name of this illness is really unfortunate and is part of what creates so much stigma and misunderstanding.

2) It took 2 years for you to be diagnosed with CFS. How many doctors did you go through before someone realized what you had? What were the frustrations of your diagnostic process?

I'd say I probably saw about a dozen or more doctors before I was officially diagnosed. I saw several internists, several infectious disease doctors, a neurologist, an endocrinologist, a rheumatologist, etc. They had to rule out all kinds of other diseases first, so it took a long time. Much longer than it should have, in part because of the lack of knowledge about CFS even within the medical community. I have had doctors tell me they didn't believe in CFS, that I was probably just depressed and should "snap out of it," and even that I needed to stop causing so much distress to my family. It's really terrible some of the things doctors have said to me over the years. Not that there haven't been some competent and compassionate MD's along the way as well, of course, but they were the rarity rather than the norm. There are very few doctors educated on CFS out there, and that's a real problem.

3) I’ve seen your Youtube video, as I mentioned before, but I’d like to know more. Please tell me how being chronically ill affects your everyday life. How many hours a day do you need to sleep? How much time are you actually able to spend doing things you enjoy? Who takes care of you? What is your relationship with your caretaker like?

Prior to getting mono and developing CFS, I slept like a rock each night, and needed very little sleep to feel energized, healthy and functional. The sleep disturbances so common with this illness seemed to occur overnight for me the very day I fell suddenly sick. So, I don't often sleep very well and don't feel refreshed even when I do. I tend to get between 5-9 hours of sleep each night, depending. If I get less than 8, I am completely non-functional.

As for day-to-day activities, I'm very limited, especially following my recent setback. I tend to spend about an hour online writing and checking email and my various social outlets, and then I'm pretty much wiped out. So, the remainder of my day is usually spent listening to an audiobook or to music or NPR/talk radio. Sadly, that's about it. It's all terribly exciting. ;) Clearly it's not the adventurous, active life I'd always imagined for myself, but I do the best I can with it and try to take things day by day. I still have faith that a full, healthy life awaits me and remains attainable.Regarding assistance, I live in my parents' house and they both help me out as needed. Due to severe orthostatic intolerance, I can only sit up for about 5 minutes, but thankfully I can make it to the rest room on my own in my wheelchair (about 3 yards away), and can still sponge bathe in bed on my own as well. So really I mostly need help with food/meals, cleaning, laundry, errands, phone calls, etc. My mom does all of that for me and I'm extremely grateful to her for it.

If my parents are not available, our wonderful next door neighbor comes by to help me out as necessary. We are very lucky to have her. We used to use a disability service, and they were terrible... incredibly unreliable. So this works out much better, and I feel really fortunate about that.

This illness is often quite hard on the caretaker as well as the patient, particularly if that person is a family member. The dynamics change, and there are so many frustrations on both ends. It's very hard to watch a loved one suffer, and feel there's not much you can really do to help. So, I try to make this as easy on my family as possible and to ask for as little help as possible as well.

4) Can you lead me through an average day being Laurel?

Oh boy. :) As mentioned above, my day-to-day life is not very exciting. The highlight of my day really is checking my email and writing to/hearing from my fiance. I am usually wiped out after about an hour of online activity, and the remainder of my day is spent listening to the radio or an audiobook. Due to neurological problems, I can't read books or really watch TV, so audiobooks have become a huge part of my life. Some days I'm too sick even for that, and can do nothing but lay in bed in silence, or listening to music.

On "decent" days, I can sometimes be wheeled to my parents' bedroom to lay in their bed for a change of scenery. Their room has a larger window with a better view of the mountains, which can make for a nice temporary escape. I call it my jail break. :)

5) What kind of stigma have you experienced having a chronic illness, especially such a severe one? How has your relationship with others changed since you have been sick?

The stigma attached to this illness is tremendous. Again, I think that has a lot to do with the name. It suggests we are all just tired or lazy, and that we should be able to deal with it and get on with our lives. I still remember the first time I told someone I had CFS and they actually laughed at me. Laughter is not a response you expect when telling someone you have a serious, debilitating, multi-systemic disease. But I've actually had that response more than once, particularly when I was still working and seemed healthy. When I first became homebound, someone actually said to me "I wish I could take time off work and just lay around the house all day too." You would never hear someone say that to a person who had just become disabled with MS, HIV/AIDS or cancer, diseases the CDC has equated CFS to in terms of illness severity and disability. So, there's a real lack of understanding.

I also think there is a stigma attached to the idea of a chronic illness in general, and to the severity of that illness. That is, if you are bedbound with chronic disease and with little improvements over time, some people can see that as a failure of some sort. They think you should be able to overcome it somehow, even if there are no viable treatments available. I actually had someone (who clearly didn't know me very well) tell me that if I am still this sick after all these years, then I must just not want to get better. It was as though the person thought I would actually choose this for myself, or as though I haven't done everything in my power to try to get well. It can feel very demoralizing.

Regarding relationships, I don't think there is a single relationship this illness hasn't affected. With my case being so severe, I am unable to talk on the phone, unable to spend much time online, and can only tolerate a few minutes of interaction. That obviously creates a huge barrier on maintaining strong relationships with the people in my life. We do the best we all can to work around it, but obviously it makes things much harder. The dynamics of the relationship also change. There's no longer an equal exchange of give and take. Obviously I'm not able to give of myself in a relationship as much as I would like, and that is hard as well.

Illness in general is also a difficult thing for a lot of people to deal with. While I am fortunate that most of my friends have stayed in touch with me, there are also a couple who have quietly disappeared. People go on with their lives. I also think some just don't know what to say after awhile, especially since I can't always respond. I certainly don't blame them for that, of course. But I do miss them.

6) Would you characterize your illness as an “invisible illness?”

The fact that most of us don't look sick does, I think, contribute to the stigma and misunderstanding of this illness. It's hard for people to truly understand just how sick we are when we look perfectly healthy. Even for those of us bedbound or wheelchair bound, it's still hard for most people to really grasp. This is made worse by the ridiculous name, as discussed above. Because really, who hasn't been chronically tired? I think until the name changes, we will continue to experience misunderstanding. I'm hoping with the latest research that things will start to turn around soon. I'm especially hopeful that new and better treatments may be around the corner.

7) You’ve mentioned that you are not depressed, which I’m glad to hear. (I unfortunately can’t say the same, but I am under adequate treatment for that part of my illness story). Even so, your blog is called “Dreams at Stake.” How does putting your dreams on hold make you feel? Are you frustrated, upset, or do you simply accept your condition?

I am fortunate that depression has not been an issue for me despite my situation. Though, if it were, it would certainly be understandable. It's easy to see why someone with CFS may also suffer from depression, but important to note that the depression is most often secondary to the illness. That is, as with any debilitating disease that involves so much loss and physical pain, there is likely to be some grief and sadness to come along with that. Secondary depression can occur with any kind of serious, life-altering illness.

While depression thus far has not been an issue for me, it is not to say I don't have my down moments, or that I am not disappointed and intensely frustrated by my situation. This is especially true when I'm having a major setback like I am now, and am even more limited and sicker than usual. It is beyond discouraging. But I try as best I can to stay focused on what I have, rather than what I've lost. I think it would be impossible to get through this on a daily basis otherwise. I am fortunate to have my fiance to help with that, as I am not sure I'd have been as successful in getting through this without him.

I think it's important to differentiate between depression and frustration. With depression, a person tends to give up all hope. With frustration, the very word implies that the hope and determination and desire are all still there. So yes, I am incredibly frustrated. I am frustrated at all the lost dreams, at all the lost relationships and experiences and goals. I am frustrated with the lack of research and understanding, the misconceptions, and the stigma. And I'm frustrated by CFS itself... its severity, its limitations, its unrelenting nature, etc. It's all unbelievably frustrating. But despite it all, there's still meaning and hope in my life, and that's what I try to focus on as best I can.

As for my blog title, I have to confess I didn't come up with that entirely on my own. I had submitted my story to The CFIDS Association of America, and they asked if they could publish it. They came up with that title, and I liked it. It summed up the main reason I had written my story -- to plead for more action and to emphasize that people with CFS are people with dreams and ambitions who didn't want to be sick, and who want to get well and live out their lives just like everyone else. I wanted to show that, even though this illness has taken away the fulfillment of many of our dreams, it has not taken away the dreams themselves.

Anyway, that was a really long answer!

8) What do you enjoy most in your life?

I've learned to appreciate the little things, which when you think about it, are really the big things anyway: my fiance, my family, my friends, good food, a bed to sleep in, shelter, the views from my window, a good book, a rare day of not being in total physical distress from morning until night, being able to write when I can, etc. If this illness has taught me anything, it's to appreciate the little things, because you never know when they might be taken from you. When I first became housebound, I thought I'd lost everything. But I could still walk, talk, shower, watch TV... I didn't realize how good I had it. :) I wish I'd been more grateful for the little things then, and so I try to be mindful of that now and enjoy what small things I can still enjoy.

Finally, I’d like to hear your thoughts on blogging and online community.

1) You started your blog last May. What made you decide to start a blog?

I started to blog for two main reasons: to raise awareness, and to have a voice. I used to get so frustrated that those of us most severely afflicted with this illness do not often get to tell our story because we are simply too sick to do so, and our stories therefore are not often heard. It occurred to me one day that I could try to be that voice, even if in just some small way. I wanted my story out there, as well as Jim's, in the hopes that it could increase awareness and would perhaps be helpful to others going through the same thing.

Blogging has become more difficult for me with this last crash, but I hope to continue with it whenever I am able.

2) How has blogging increased your feelings of community (if at all)? Have you found many others who empathize and understand your daily struggles?

The blogging community is great! When I first started to blog, I had not been anticipating that it would be so interactive, and it was a nice surprise. I am not able to be as interactive as I'd like to be (it's so hard for me to keep up with it all), but it is good to know there's such a large community out there, and that we are all supportive of each other. We are not alone, and blogging is a great reminder of that.

3) Have you joined any other chronic illness communities? If so, which ones and how have they helped/ affected you?

I do belong to some other social outlets, (e.g., CFS and Lyme message boards, Facebook, a book club, etc), though I haven't been able to be as active on any of them since crashing. But it is a great way to communicate and meet others going through the same thing, or to stay in touch with old friends, meet new people, etc. It helps with the isolation that is so common with this illness.

4) Why do you blog?

Again, primarily to raise awareness, and to get my story out there. It's a tremendous thing to feel like you are finally being heard.

5) How do you balance your desire to be online with your personal struggles with sensory overload? How do you budget your time?

Oh that's a tough one!! I am not good with pacing AT ALL. I've always been an over achiever; someone who always needs to be doing something, always accomplishing something, always active and engaged. I am not one who has ever been good at waiting, or resting, or laying around. That's really been the toughest thing for me, and is a constant struggle. I don't think I'd have gotten as sick as I have if I'd been better able to manage that struggle, instead of always being so determined to try to push past it. Even now when bedridden (in fact, perhaps even more so), I don't think a day goes by that I don't push my envelope in some capacity, hoping (despite about a million lessons to the contrary) that today will be the day I get away with it. The push/crash phenomena of CFS is such a brutal and difficult lesson to learn. But I do my best with it. I try to give myself a set time of how long I spend online each day. I don't always follow that time-line very well, but I do try.

CFS truly requires an enormous amount of patience.

Thank you again for talking with me, Laurel.

It was my pleasure, Robyn. Thank you!

Survivors

You often hear the word survivor used to describe someone who has overcome a life-threatening illness or situation. There are survivors of cancer, strokes and heart attacks. There are survivors of natural disasters, poverty, rape and war.

There is no doubt whatsoever that every one of these brave and triumphant individuals should be celebrated. They have each earned their badge of courage, and they are a symbol of hope and strength to others facing the same challenges.

Still, whenever I hear this word spoken, I can't help but wonder to myself... what does it truly mean to be a survivor? Does it mean to have once been ill and to now be healthy and disease free? Does it mean to have faced an extraordinary hardship and come out the other side? What of those who fought but lost the same difficult battle? Did they not struggle through with the same amount of courage and determination? Did their spirit remain strong and intact despite not ultimately being victorious? And is that not the true victory in the end?

And what of the chronically ill? What of those of us who have suffered a debilitating disease day in and out for years and years on end? What of those of us who face all the multitudes of suffering and loss that come with an unabating chronic illness, and yet do not allow it to daunt our spirits? Are we not survivors as well, even though we remain ill?

I believe, unquestionably, that we are.

Viktor Frankl, a psychiatrist, author and, yes, holocaust survivor, writes: "The greatest human achievement is not success, but facing an unchangeable fate with great courage."

Success isn't always about winning. It's about how the battle is fought. It's about having the hope that we will eventually conquer despite the odds, and striving for that victorious moment with courage and grace. It's about how we face our obstacles, and not necessarily on when or even if we overcome them. There's more than one way to overcome an obstacle. There's more than one way to be a survivor.

Those of us dealing with a serious and debilitating chronic illness can often feel we have failed in some capacity. Society doesn't look well upon those who have not achieved the usual perception or definition of success. This is often further compounded if one's chronic illness is invisible to the casual observer. Others can't always see our struggle, our determination, or our courage. As we fight the battle of our lives, perhaps even FOR our lives, we are not recognized. In fact, we are often ignored. Worse still, we can even be erroneously seen as malingerers. Thus, on top of combating illness, we must also combat against the misconceptions of our illness.

And yet, we still don't give up. We continue to rise to the challenge, even when we may no longer feel we have the strength to do so. We learn to cope, to focus on the small joys of our lives, and every day, to keep up the fight. Stripped of many of the things we once thought defined us, we are forced to look within, and find out who we truly are.

In other words, we discover that we, too, are survivors.