Wednesday, November 28, 2012

Nature's Solace

Sometimes, on "good" days, my parents wheel me to the other end of the hall where, for a couple hours, I am able to lie in their bed instead of my own.  I often refer to these days as my jail break. It is the only time I ever really get to leave my room and see an alternate view. I am fortunate that this alternate view also happens to be so gorgeous.

 

A funny thing happens when you are confined indoors to one room day after day for over a decade.  The outdoors becomes almost surreal in its beauty.  The mountains are always more majestic than I remembered, the trees a brighter green, and the sky so vast and vivid blue that it takes my breath away.  It feels a bit like being a child, discovering the world for the first time. 
 
I try to notice something new with each visit, such as a shrub or cactus that previously escaped my notice, the formations and patterns of the clouds, the way the branches of a particular tree sway in the wind, or how the sunlight casts varying shadows on the mountains.

A few months ago, I discovered something I'm surprised I'd never seen before.  I've been looking at these mountains now for years and somehow never realized that there's an old man up in those rocks.  I'm not sure if he's always been there, or if there's been a slight change in the shape of the rocks to make him appear more prominent. But he's there,  lying down on top of the mountain, facing the sky.

(Click to enlarge, or click here for a detailed photo)

Now that I've found him, he's pretty much all I can see. I like him, though.  We are living parallel lives. The only difference is that he gets far more sunshine than I do. :)

I also love to see the birds soaring through the sky with so much ease, grace and freedom.  They fill me with both awe and envy.



Back in my own room, a variety of birds and wildlife continue to keep me company through my window.  The goldfinches are still my favorite.  They bring a brightness to the desert and sing such beautiful songs.


Besides my window views, my only other real means of escape is through audio-books. Due to neurological and cognitive problems stemming from ME, I have not been able to read or watch TV in 12 years. Thus, my main way to pass the time is through listening to the radio or to audio-books from the library.  Sometimes, unfortunately, I'm too sick even for that and am unable to tolerate any sound at all.  On those days, the dreams that come with nightfall are my only relief.


Recently, I listened to the audio version of The Diary of A Young Girl by Anne Frank.  For those who may not already know, during World War II, when Anne was just 13 years old, she and her family went into hiding in the attic of an old office building to escape capture by the Nazi regime.  They remained there for two years before being discovered.

I first read Anne's diary as a teen. It was quite interesting for me to revisit from my current perspective –  as one who is also living in confinement (though clearly confined for different reasons). 

Anne, too, writes of how nature took on a new beauty for her.  Things she once took for granted and barely noticed now rendered her speechless. Because it was so dangerous for her family to be seen, shades were always drawn and glimpses of the outside world were rare.  Anne loved to go up to the upper floor of the attic where she and her companion, Peter, could look out the window at some distance. She writes:

“The two of us looked out at the blue sky, the bare chestnut tree glistening with dew, the seagulls and other birds glinting with silver as they swooped through the air, and we were so moved and entranced that we couldn’t speak.” 

Anne felt nature was the best remedy for coping with her dismay about her circumstances. Nature made her feel like God was present and that all was as it should be.  As long as the beauty of nature existed, she stated, “I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles.”

I, too, often find solace in nature.  There is something comforting in its beauty and perfection.  It is a reminder that there is harmony in life; there is possibility and hope.  Someday I will no longer be limited to windows in order to see blue skies.  Someday the answers will come, the doors will open, I will step outside and be free.

Sunday, August 12, 2012

Holding on to Hope

A few months ago, I received a catalog in the mail from a popular clothing company.  Splashed among the first few pages, I found an array of photos showing off their new line of pretty summer dresses. And I suddenly realized that it's been 12 years since I wore a dress.  Such a simple thing, and yet, as silly as it may sound, the thought nearly brought a tear to my eye.  

While I do miss wearing something so bright and feminine, it was what the dresses represented that evoked in me such longing:  the promise of warmer weather ahead, of being outdoors, experiencing adventure, attending social gatherings, taking leisurely strolls and feeling soft breezes or hot sun on your skin. I want to be out in the world, free of all barriers, living life. 

As I continued to flip through the catalog, I saw photos of women modeling various styles of bathing suits as they walked along the shore or lounged in a beach chair to soak up the sun.  And I thought about how it’s been 15 years since I’ve seen the sea.  It’s been 15 years since I smelled salty ocean air or felt hot, sunburned sand on my feet.  To me, there are few things more stunning to behold than a sea-side sunset, nor more soothing to the mind than the sound of ocean waves as they reach for the shore.  

But it was what I saw next that produced in me the most longing.   Further into the catalog, there was a photo of a couple holding the hand of a child in an obvious attempt to portray a family.  And it is that -- a family of my own-- for which I've yearned most in life.  It is a desire so profound that it feels as though it is an integral part of who I am.

And yet, I am reminded that I just recently turned 40.  I turned 40 before I ever had the chance to be 30.  I was young when I got sick.  I am now middle-aged.

As this milestone birthday has come and gone, I realize I may soon need to begin slowly letting go of some of my dreams.  Because no matter how desperately I want it, I am now at an age where I am getting too old to still be considering a future that includes children of my own.

The problem is that I'm not ready to let go. Not yet.  I still want that family.  I still want that leisurely stroll along the beach in my pretty, new, summer dress.

 For now, I wait. I continue my search for answers. I perservere. And I hold on to hope.

Photo courtesy of gettyimages.com
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If you haven't already done so, please sign this petition to Secretary Sebelius relating to ME.  Thank you!

Wednesday, April 4, 2012

In the Meantime...

This is just a short post to let everyone know I will be taking (or continue to take) an extended break from blogging in order to focus more fully on my health. I hope to be well enough to start writing again in the near future.  In the meantime, I thought I'd share a few more photos from my little bedroom window.

Within the confines of these four walls, my life is at a standstill. Outside, life goes on -- vibrant, beautiful, active and free. It is where I so desperately long to be.



Amaryllis Blooms

Amaryllis

Cute Bunnies

Deer at Christmas-time

More Deer

Cute Round-Tailed Ground Squirrel Strikes a Pose

Pretty Goldfinch

Lots of Finches


Quail

Phainopepla

Cooper's Hawk

Finches Waiting out the Rain

Through the Clouds... A Rainbow


So shines the setting sun on adverse skies,
and paints a rainbow on the storm. ~Isaac Watts


Wishing everyone better health, fewer storms and brighter skies ahead.

Thursday, March 22, 2012

In Memory of Emily


It is with much sadness that I write of the passing of Emily Collingridge -- a brave young woman with severe ME who died on Sunday from complications of the disease. She was 30 years old.

Emily, who was stricken with ME at the age of six (and had been mostly bedridden since her teens), still managed to accomplish much in her short life. She authored the book Severe ME/CFS: A Guide to Living. She also worked as a volunteer advocate for the Association for Young People with ME (AYME) as well as a family support charity called Home-Start. She managed to do all of these things from her bed, but was unable to continue when she suffered a setback in 2005.


Emily graciously allowed me to include her story and photos in my October 2011 testimony to the (ME)/CFS Advisory Committee. In that testimony, I borrowed from Emily's own appeal to tell her story:

[Emily] writes: "I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison."
Emily's daily life involves medicine/fluid being pumped into her stomach through a tube, various injections, diaper changes, transient paralysis and pain so severe she sometimes hallucinates.
[She states]: "This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change."

Although Emily and I only corresponded a few times in the last many months, it was enough for me to have considered her a friend. In the brief time that I knew her, I found myself repeatedly touched by her kind nature and her strong desire to help others, even when she herself was so terribly ill. Most of all, I was inspired by her strength, spirit and determination -- all of which she continued to demonstrate to the very end.

Today, I feel both saddened and angered. Emily was so young when she fell ill, and so young when she died. She had such potential; such vitality and desire for life. She should not have suffered as she did. She should not have had to die. We are repeatedly told by government health agencies that there is not enough money to increase funding for research; that things take time and we need to be patient and wait. But some of us have waited an entire lifetime. And for some, like Emily, it is already too late.

I hope that Emily's death will not be in vain. I hope that, in hearing her story, people will start to understand just how devastating this illness truly is, how dreadfully sick we are, and how desperately we need help.



My heartfelt sympathies to Emily's family and friends. She will be missed by so many.

For more about Emily, please check out the following links: