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.

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!

 Edit: Links have been removed as the magazine has been discontinued.