Thursday, December 16, 2010

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.



Tuesday, November 23, 2010

Finding Grace When "Life is Hard"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, October 4, 2010

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. 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 anything down. 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.

Once again, this will likely be my last post for some time, unless there is any breaking news to comment on. My health has not been its best, to say the least, and this month will be one that requires all my energy and focus. I hope to be back fairly soon however, and wish everyone a happy fall season.

***

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

Sunday, September 5, 2010

Wonders of Life

An April 2003 Journal Entry

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

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

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

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

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

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

Sunday, August 15, 2010

Wildlife Window

It goes without saying that not much happens within the confines of my little room each day.  Surprisingly, though, if you are watchful enough (which I am), there's quite a bit of activity that occurs in the small area just outside my window.  At the risk of looking like the paparazzi of wildlife, I thought I'd share more photos of some of my most recent wildlife visitors.

I should probably first note that, as you will see, the pictures are not of the highest quality. My window is on the opposite wall of my bed (about 10 feet away), so I have to try to zoom in through my window screen from afar, and I can't use a flash because it creates a reflection. Needless to say, while I did my best, it's highly unlikely I will be winning a Photographer of the Year award any time soon.

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





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

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





How cute are they? Note the lizard with the two bunnies in that last photo. He seemed to take a liking to them, and the three hung out together for several days.

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

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

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




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


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


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


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

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




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


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

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




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

Peeping Tom


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

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

Sunday, August 8, 2010

Primetime Live: CFS and the CDC

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

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


Primetime from Barborka on Vimeo.

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

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

Saturday, July 17, 2010

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.

Monday, June 21, 2010

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.

Tuesday, June 8, 2010

Determined Spirits

In this month's Life Skills Magazine, there is a special "bumper" edition which is devoted and dedicated to all those determined spirits who suffer from ME/CFS/CFIDS.



I feel incredibly honored to have been invited to participate in this wonderful opportunity to help raise awareness. My submission is called Recognition and Reflection. It is a 2001 journal entry written shortly after I first became home/bedbound and unable to speak more than a few words above a whisper. I had hoped to write something brand new for the purpose of the magazine, but regretfully I was too sick at the time, so I had to go with something already written.

In the magazine, you will also find some fabulous contributions from:

Dominique of 4 Walls and a View

Sue of Learning To Live With CFS

Jolene of Graceful Agony

Renee of My Autumn Years and Renee's Reflections

Shelli of A * Musings and Living the CFS Life

This is my first magazine publication, so I'm pretty excited about it, and feel privileged to be included with such wonderful writers and some fellow blogging friends I've long admired.

If you'd like to see the magazine and any of the above articles, you can go to Life Skills Magazine and subscribe. It's free!

Well done to all involved! And much gratitude and thanks to Dominique who invited me to participate, and Ayo (the magazine's founder and editor) who accepted my contribution. It's been such an honor!

Thursday, June 3, 2010

As Time Goes By

Although I've had a lot on my mind to write and share, my health has regretfully been too poor for me to really do so. This being the case, I thought I'd instead show you all a few more recent glimpses into my little world. Each of these photos was taken from bed over the last several months. As you can see, though there's not much activity going on inside, there's a lot going on outside.

A brave new bunny finds a home in my courtyard


...and has already made friends with her neighbors



A squirrel steals food from the bird feeder


A quail makes an extra special effort to say hello


Two mourning doves and a finch in a mesquite tree
(isn't that how the song goes?)


A finch hogs the hummingbird feeder


A woodpecker hogs the hummingbird feeder



A cardinal hangs out all nice and peaceful


...then catches me taking his photo and gives me the evil eye


A very rare hawk sighting


Cool bird


Same cool bird from a distance (click to enlarge)


That last bird (according to my bird identification book) is called a pyrrhuloxia, which is unfortunate, as it sounds more like a disease. Apparently, they are also referred to as gray cardinals or desert cardinals. I wish my photos of this one had come out better, but he was so far away that it was hard to zoom in clearly enough with my little camera.

Keeping up with the feeders has become a full time job for my parents. They fill them to the brim only to find them empty the next day. I've therefore come to the conclusion that it is quite the inaccuracy to say someone "eats like a bird" to imply that a person is a light eater. As it turns out, birds eat like pigs. :)

Anyway, it's been sort of interesting to watch the dynamics of all the various birds as they interact with one another. Some (like the woodpecker and curve-billed thrasher) are generally completely unwilling to share the feeder, while other birds (such as finches and cardinals) are typically much more willing to make room for everyone.

I've yet to see any coyotes, deer or bobcats this year, and for the rabbit's sake, I'm glad of it. I also have yet to see any scorpions or ridiculously huge spiders lurking around and, for my sake, I'm especially glad about that.

As for life indoors, time passes slowly, and yet, simultaneously whirls by. I am reminded of a quote I jotted down recently:

Mysterious paradox: time, motionless here, gallops out there. In my contracted world, the hours drag on, but the months flash by.
-- Jean-Dominique Bauby, The Diving Bell and the Butterfly
Actually, this quote deserves further comment. For those who don't know the story, the author (the former editor-in-chief of French Elle) had a stroke in his mid 40's that left him with a body entirely paralyzed but a mind fully intact. This condition is referred to as locked-in syndrome. In the author's words, it is "like a mind in a jar."

The one part of his body that Bauby could move was his left eyelid. Remarkably, he was able to use this single movement to communicate. As a special alphabet was dictated to him, Bauby blinked when he heard the letter he wanted to convey. In this way, slowly and patiently, letters became words, then sentences, and ultimately ended in a memoir.
Quite an extraordinary feat.


I of course can't begin to know what this man's struggle and experience was like for him. I feel extremely fortunate to still have some movement of my body, even if most of it is in bed. I cannot imagine not even having that liberty. Still, at least to some small degree, I found myself relating to many aspects of his story. My mind, though significantly slowed and exhausted from illness, is full of ideas, aspirations, motivations and observations. And yet, they remain, for the most part, largely unexpressed. My body lacks the ability to free them, or to free even itself.

I am locked in, and I want out.

In the meantime, life goes on, both in and outside my window. As I lay here persevering, I watch the birds greet each new sunrise in song. They remind me of the beauty around me and of the freedom that lies just within reach. Someday, I will be outside again too, singing my own joyful song along with them.

Tuesday, May 11, 2010

May 12th: ME/CFS Awareness Day

 This post was updated September 2012

May 12th is International ME/CFS Awareness Day. Unless you have or know someone with ME/CFS, you probably wouldn't know that. And even if you did know, you probably won't read about it in any newspaper, nor hear about it on any media outlet. Like many ME/CFS patients themselves, this day tends to go by unmentioned, unnoticed, unheard.

So, in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:

1. ME stands for myalgic encephalomyelitis -- a complex, multi-systemic illness affecting the immune,  endocrine, cardiovascular, autonomic and central nervous systems.  It is classified by the World Health Organization (WHO) as a neurological disease.

Unfortunately, ME is also often referred to as chronic fatigue syndrome (CFS), a highly trivial-sounding name given to the disease by the Centers for Disease Control (CDC) after one of the largest U.S. outbreaks of the illness in Incline Village, NV in the 1980s.  It is now often abbreviated ME/CFS.

2.In order to be diagnosed with CFS in the U.S., you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50% as well as at least four of the following symptoms: post-exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory problems/difficulty concentrating.  These symptoms must be present for six months or longer.  This set of diagnostic criteria for CFS is referred to as the 1994 CDC Fukuda definition of CFS.

Many patients also suffer from severe neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, shortness of breath, chest pain and many other symptoms.

In 2011, a new international definition of M.E., the International Consensus Criteria, was established by doctors and specialists from around the globe and published in the Journal of Internal Medicine. It is yet to be known if/when the CDC will officially adopt it.

3. Studies have shown ME/CFS can be as or more debilitating than multiple sclerosis, lupus, COPD, heart failure, late-stage AIDS and end-stage renal failure.

Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was recently quoted as saying:
"I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

4. ME/CFS afflicts both genders and all age groups, including young children. Approximately one million Americans have ME/CFS. That's more than the prevalence of breast cancer, AIDS, or lung cancer combined.  Additionally, at least 17 million people suffer from ME/CFS world-wide.

5. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are bedridden or completely homebound.

6. ME/CFS often has a viral and sudden onset. Many viruses have been linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial infections have also been associated with the disease, including mycoplasma, Q Fever and Lyme disease.


7. There are well over 5,000 published studies showing possible physical biomarkers in ME/CFS. Some known abnormalities include: low natural killer cell activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, mitochondrial damage, orthostatic intolerance, low blood volume, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, oxygen toxicity/cellular hypoxia,  left ventricular dysfunction in the heart  and delayed V02 max (oxygen utilization) following exertion.

8. A February 2011 PLoS ONE study showed that people with CFS have unique cerebrospinal fluid proteins found only in CFS and not in healthy controls.  The proteins in CFS also can be differentiated from those with Lyme disease.  As an example, the study states that "the CDK5 signaling pathway was found to be significantly enriched for proteins identified only in the pooled CFS proteome. This signaling pathway has been linked to Parkinson's and Alzheimer's diseases."

9.  In October 2011, a groundbreaking Norwegian study was published showing 2/3rds of ME/CFS patients experienced significant improvement in symptoms using a chemotherapy drug called Rituximab.  Rituximab "destroys both normal and malignant B cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells or dysfunctional B cells." The fact that this drug appears to work in ME/CFS suggests that the illness may be a type of auto immune disease. For more information, check out this excellent summary.

10. ME/CFS is thought to cost the U.S. economy about $25 billion a year, and perhaps more. The average cost per family of a ME/CFS patient is approximately $25,000 per year (including unemployment). Yet, despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in the United States (in the bottom 12). More money is spent each year studying hay fever than ME/CFS.

11. Currently, there are no FDA approved treatments for ME/CFS and there is no cure.

Updated: September 2012


Some things you can do to help:

1. Help spread the word that ME/CFS is a serious and multi-systemic disease. If someone has false misconceptions about the illness, speak up and correct them.

2. Don't call CFS "chronic fatigue." CFS is a complex illness affecting many different organ systems; it is not a single symptom. Referring to it merely as "chronic fatigue" (rather than CFS or ME/CFS) is not only incorrect, it can actually feel disrespectful.

3. If you know someone with ME/CFS, let them know you care. Drop them a line from time to time (without expecting a response). Listen to what they have to say and ask if there's anything you can do to help.

4. Become educated and involved. Read up on ME/CFS from legitimate sources and stay informed. Join advocacy groups such as the ones linked on this page, sign petitions, watch online webinars, and/or write to Congress to request more funding and awareness.

5. Wear a blue ribbon to show your support. If you are on Facebook, consider putting this twibbon (or this twibbon) on your profile picture to help raise awareness.

6. As noted above, ME/CFS is one of the least funded of all illnesses. If you can afford to, make a donation to one of the many ME/CFS charities. If you are unable to donate, you can instead write to your local senators and representatives and ask that they allocate more funds toward ME/CFS research.

7. Below are a few informational videos about ME/CFS.  Take a look, listen and pass them on.

SolveCFS Video



Sleepydust Video



May is also Lyme Disease Awareness Month. To learn more about how this co-existing infection may be complicating my personal case of ME/CFS, please read my previous post titled A Note on Lyme Disease.

Thank you.

Permission is given to anyone who wishes to re-post or link to this page.

Friday, May 7, 2010

Happiness & Other Tidbits

So, better late than never, right?

A few months ago (okay, more like 7 months ago) I was honored to find I had been tagged by Joanne ( of Joanne's Cottage Garden) in what is apparently called a Meme. The idea is to list 10 things about yourself you think your readers may like to know, then ask other fellow bloggers to in turn do the same.

Much thanks also to Dominique at 4Walls and a View , Forgetful Girl and Lisa at Sundog Tales who all (fairly) recently nominated me for a Happiness Award. The concept there is similar, too: list 10 things that make you happy, and then nominate others to do likewise.

So, while it took me awhile to finish it, here are my lists! I'm combining the two awards into one entry. I think that's allowed, right? :)

Here are 10 tidbits about myself you may or may not be interested in (insert drum roll here)....

1. I was named after mountain laurels, a flowering plant abundant in New England (where I grew up). I was not named after Laurel & Hardy, though I get that question a lot.


2. I was born a blonde, and stayed fully blonde until I was about 6 years old. I'd say that explains a few things about me, but I don't want to insult my blonde friends.


Me, age 4-ish.

That photo was taken at Storyland in N.H. I cropped out the freaky looking clown behind me so as to not scare anyone.

3. I grew up in a small town with quite a few dirt roads, no street lights, no banks, no gas station, no restaurants and just one small general store.



Okay, so that's not an actual working road in my hometown. It's a small path off one of the dirt roads, but you get the idea. :) One of my favorite memories as a kid is riding my bike to the small convenient store with friends. We would buy candy or ice cream treats for 25 cents... which I think officially makes me sound old.

4. I have always deeply yearned to be a mother. It's something I've dreamed of since I was a little girl, and I continue to hope that I will still someday have the chance to experience all the joys of motherhood.

5. I studied abroad in London for a semester my junior year of college, and backpacked through Europe with a friend during spring break. After college, that same friend and I drove across the U.S. for almost 2 months. I love to travel. Some of my favorite places include Hawaii, Bryce Canyon, and Italy. Here are some photos I took of said favorite spots:

Venice, Italy

Kauai, Hawaii

Bryce Canyon, UT

6. I have always wanted and would still love to take karate classes. I would also love to take dance lessons of all kinds, as well as photography, drawing, painting, watercolor, film, cooking, sailing, pilates, yoga, and a dozen or so other classes.

7. I consider it a great honor to be my nephew's godmother, and I absolutely adore both my niece and nephew. I wish so much I could be more active in their lives.

8. The day my fiance proposed to me was the happiest day of my life. I am so fortunate to be engaged to my best friend.



9. I would love to spend some time in Kenya or Nepal or some third world country and volunteer to work with poor women and children there.

10. Illness has taught me a lot about patience, forgiveness, gratitude, hope, humility and grace. In the process, I've also learned that your life is not defined by circumstances, but by how you respond to those circumstances. I dream every day of how glorious it will be to someday get my health back.
~~~~

As for 10 things that make me happy (insert more drum rolls)...

1. My fiance. Everything about him makes me happy: his friendship, understanding, humor, intelligence, strength, kind heart and his love. He makes my spirit fly, even if my body is stuck in bed.

2. Family and friends. I feel grateful to have a healthy family, loving parents and so many wonderful, loyal and life-long friends.

3. Books. I love learning, getting absorbed and being transported to distant places with a good story. I am so grateful for audio-books which regularly allow me to do so.

Me listening to an audio-book

For Christmas this year, I finally entered the 21st century when I received a little mp3 player so I can download books online, which also makes me happy.

4. Music. I enjoy all forms of music, from rock to classical to almost everything in-between. Music can immediately transport me back to healthier times and memories, as well as to new places I've never been. I love music that touches you to the core, takes you on a journey, and expresses what words alone cannot.

5. The internet, which allows me to keep in touch with friends and stay connected to the outside world in ways I otherwise could not.

6. The rare but sweet chocolate indulgence.

7. Nature. I love nature and am grateful for all the glimpses of it I can still experience from afar... from the bright blue sky out my window to the comforting sounds of bird song and the soothing, earthy smell of a soft rain.

8. Simple daily blessings like good food and clean sheets, a nice breeze from my window, or a surprise email from an old friend.

9. Dreams. I have amazingly vivid dreams. It is in dreams that I can still walk, talk, run, shower, sing, dance, work, travel, visit with friends and family, meet new people, laugh out loud, have a family of my own, paint, draw, swim and even fly.

10. Envisioning my future and all the millions of things I hope to do when well. I am ever grateful for the strength and endurance of hope.

Photo from weheartit.com

Thanks to all for the nominations! As for passing them on, I think anyone who hasn't already done so, is able and wishes to participate should make a list as well. It's a good way to stay mindful of your blessings, which can sometimes be a challenge when chronically ill.

Saturday, May 1, 2010

Eyes Wide Shut

I went to an all-girl, Catholic high school with only 44 students in my graduating class. Among other essential courses in English, math and science, every student had to take a typing class as part of the required curriculum. This, at the time, created a bit of a stir among some of us independent, strong-minded young women. I mean, really. Typing?? Did they think we were all destined to become secretaries?

But, of course, our protests fell on deaf ears. The powers-that-be continued to insist that we all sit in front of our (now extinct) electronic typewriters, dutifully typing "asdf jkl; " over and over again as we (or at least, I) rolled our eyes to the ceiling at the utter silliness of it all.

It's a funny thing, though, because that typing class turned out to be much more useful to me in my life than the more impressive courses like chemistry or physics. In fact, it may have been the single most useful class I ever took.

Here's why: something I have yet to mention on my blog is that I type with my eyes closed. Without looking at the screen (since my eyes are shut and all), I type out everything I want to say, then open my eyes to go back and look for typos. Fortunately, the plethora of said typos are usually highlighted in red, so I can spot them with greater ease. I fix a few, then rest, then go back to fix a few more, then rest, and so on.

Photo from Getty Images

Once the typo's are fixed and there are no more bright red lines to mock my typing skills, I am then able to listen to what I wrote and make corrections as necessary.

I listen to what I wrote because I can't read what I wrote. Due to neurological problems that effect both my vision and cognition, I have been unable to read more than a few sentences per day for many years. Doing so causes a setback (or crash) that can take weeks, or even months or years to dig out of, depending on how far I push it.

Fortunately, as this issue got to be a bigger and bigger problem for me, threatening my ability to even send or read email, my fiance began to search for free text-to-speech programs online. We found one that worked for me, and I have been using it for many years now. The speaker program not only reads back my own writings, but it also reads all of my emails, forum messages, comments, blogs, Facebook postings, and websites I visit. Essentially, I use the program to read everything.

I don't mention this to people often, as they tend to find it odd for some reason. I think some are taken aback that something with such a silly name as chronic fatigue syndrome could cause significant neurological problems and actually rob you of such everyday things as the ability to read or watch t.v. I also think others are weirded out by the computerized voice itself because it sounds so.. well, computerized. "Can you even understand what it's saying?" someone once asked me when they overheard my computer chattering away at me. I admit it takes some getting used to, but I've learned to adjust. In fact, I now welcome the voice, as to me it has become the sound of a familiar friend of sorts, one without whom I'd be lost.

I wanted to share this aspect of my disability because I know I am not the only one who faces this challenge. My fiance actually uses the program as well because he has the same kind of struggle. Many people with ME/CFS tend to find it more and more difficult to read, either due to the vision problems that often accompany this illness, the cognitive disturbances, the incapacitating fatigue or all of the above. And while for some this may be a mere, mild frustration (depending on severity), for others, it can mean a complete disconnect with the outside world. Compound this further with the difficulty of speech and interaction that some (like myself) also experience with this illness, and all means of communication are threatened to be lost.

So, in the event this program may be useful to some of you or someone you know, I thought I'd share it with everyone today. There are many different programs available; some are free and some must be purchased. The one I use is called Deskbot, which can be found at http://bellcraft.com/deskbot/. It's not particularly advanced, but it has worked well for me. Please make sure you are visiting the company's direct website, however, as some downloads for this program come from questionable sites and may contain viruses. Always make sure your anti-virus software is up to date before beginning any download.

Another program is called The Natural Reader and can be found at: http://www.naturalreaders.com/

This reader is actually a bit more sophisticated than my own, and when I'm up to giving it a try, I may make the switch.

Anyway, there have been a lot of other things I've also been hoping to write about these last many weeks but, regretfully, I have simply been too ill. I've recently suffered yet another significant crash, along with the myriad of tremendous frustrations and disappointments that always accompany a setback. So, for now, I'm continuing to hold out hope, attempting to rest as much as possible and taking things moment by moment.

At this particular moment, I'm off to open my eyes and typo check. Wish me luck. :)