Small Victories and a Few Sweet Moments

I have not posted to my blog in quite some time. Primarily, this is because I haven't felt well enough to put my thoughts together in any kind of formal, unified manner.  But it's also in part because, being bedridden, not much happens in my life that feels all that worthy of noting. I wake up each morning, I check my e-mail, I eat some food, I look out the window, listen to some audiobooks or the radio when able, then -- exhausted from this minimal activity -- I am forced to go back to sleep. Day in and out, year after year.

Occasionally, though, things do break from the norm.  This past winter, for example, I woke up one morning to a rare dusting of snow on the ground. As a native New Englander, this would hardly seem worth mentioning. However, having lived in Arizona for 15 years now, the sight of snow accumulated on the ground (versus merely gracing the tops of mountains) feels like some sort of magical event. Thus far, I've only seen it happen twice.

Of course, this being a desert, the snow had completely melted within a few hours of morning sunlight.

In other news, this past March, Jim and I celebrated our 10th anniversary. He sent me a beautiful bouquet filled with 10 unique flowers to represent each year. It was incredibly sweet and thoughtful of him, as always. Our relationship continues to be long distant as a result of our health, but it remains as strong and rewarding as ever.

In April, my brother and his family came out to visit. I got to see them for the first time in two years. As with their last visit, my health only permitted me to spend a few minutes with them each morning. It was just enough time for me to enjoy seeing their smiles every day, give them a hug and tell them I love them. As much as I yearned to spend more time with them, I was grateful for every moment we were able to share.

I also loved to hear about some of their adventures as they visited various tourist sites in the area.  Here's a photo of my adorable niece and nephew at Sabino Canyon, which was one of my favorite places to visit back in my healthier days (photo courtesy of my brother).

When you have severe ME (or, for that matter, even mild to moderate ME), life becomes all about the small accomplishments and the rare but sweet moments of slight reprieve.  Perhaps that's why, when I got to move from a bed and lie outside for the first time in over two and a half years, it felt so amazing and utterly liberating to me.

This was the first occasion in almost three years that I really felt well enough to even consider lying out. It also helped that we seem to have found a way to make it a bit easier for me, eliminating the need for a ramp. My parents move the lounge chair right up to the sliding glass door, so that all I have to do once they wheel me to it is plop down from my wheelchair. Getting back up is a bigger challenge, but thus far, I seemed to manage it without too huge a setback.
 
It's one thing to see a small patch of sky from your window every day, but it's another to have it right above you.  I tried to soak it all in as best I could.

Spring is such a beautiful time of year here, with all the colorful cactus blooms brightening up the desert.  Everywhere I looked, I saw tiny splashes of pink, yellow, red, white and orange.

I also loved seeing all the tree branches gently swaying in the wind as all sorts of different birds sang their pretty songs.  It was almost like watching nature put on some sort of graceful ballet.

My own bedroom window continues to allow me momentary glimpses of other lovely sights as well.   On one recent Sunday morning, two deer showed up and decided to lie out under the shade of one of our mesquite trees for well over an hour.  They were beautiful.

Apparently, much like cattle, deer will lie down in a secluded place to chew and digest their food. I was glad they chose a spot so close to my window where I could watch and admire them.


And that about sums up some of the basic highlights of the last six months of my life.  There were plenty of negative highlights as well, of course, but I'm choosing not to focus on those for now, as there's no sense in reliving them in any detail.  The repeated setbacks and crashes that inevitably come with this disease often can be so brutal, persistent and difficult to put into words that, as soon as they lift even slightly, one doesn't want to look back.  

Overall, my health remains the same. I am still mostly bedridden and unable to speak much more than a few words above a whisper.  I still can't stand, walk, read, take baths, watch TV or fully care for myself.   However, thanks to small victories and a sprinkle of precious moments like the ones above, I also still have hope.

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Note:  After a long break, I am back on Twitter!  However, I lost all my followers when I deleted my account.   If you'd like to follow me or re-follow me, I can be found here: @DreamsAtStake

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: lying motionless, enduring the storms that come and go. 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.

Lesser goldfinch

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.

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 persevere. 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!

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.

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:

• Severe ME: A Guide to Living
• Indigo Jo: Emily's Appeal
• Indigo Jo: Emily Rose Collingridge: 1981-2012
• ME Association: Emily Collingride: Such a Short Life, Such a Huge Legacy
• 4Walls and A View: The Disconnect Between Rhetoric and Reality in Myalgic Encephalomyelitis

These Small Candles

One thing I think this illness has taught me over the years is the need to maintain a constant sense of perspective.

I can recall healthier days many years ago when I sometimes complained about various inconveniences I now see as luxuries:  long lines at the grocery store, traffic, the high cost of a movie ticket or night out with friends, the tediousness of housecleaning, an especially difficult day at work.

And yet, as I reflect back on those things, I long to find myself in some of those same circumstances, which I now view as great privileges.

Today, I would do anything for the blessing of being well enough to go to a grocery store and pick out my own food, and would happily stand in long lines to do so.  I would be equally thrilled to pay any amount if it allowed me even one night of health to spend out (or in) with my family and friends.  And I would never complain about a long or hard day at work because I'd be so overjoyed to even be ABLE to work that I would be there half an hour early every single day.

When I first became ill, I thought I'd lost so much. And I had.  But despite how difficult my life had become as a result of my health, I was still able (with extreme determination) to continue to work. I was still occasionally able to go to lunch or to a movie with a friend.  Though it was difficult, I could do my own laundry, get my own groceries, cook my own meals.   I didn't realize how extremely fortunate I still was.

And then, I had a life-changing setback which left me housebound. Suddenly, I found myself  once again longing for my old life. Not just the life I had before I got sick, but the life I had just prior to the setback. If only I could get back to my previous level, I thought, I'd never take anything for granted again.

And then another setback struck, this one leaving me bedridden. Then another, leaving me unable to speak above a whisper. Then another, leaving me unable to shower. And so on.

Each time I have a setback, I find myself yearning for what I had before it -- for what gifts I did not fully appreciate as much as I should have, and for things I never even imagined I could lose or would have to go without.


This illness can take away so much from our lives: our independence, our careers, our hobbies and our sense of identity. In extreme cases like mine, it can even take away basic, elemental abilities we don't expect to lose until we are nearing the end of our lives.

As I've mentioned previously, in order to cope with this degree of  loss, I've had to learn to shift my thinking; to try to focus on what things I can do on any given day, and not on what I can't. This is often easier said then done.

Struggling with these challenges, I recently found myself searching for quotes on hope. I came across the following:

"In moments of discouragement, defeat, or even despair, there are always certain things to cling to. Little things usually: remembered laughter, the face of a sleeping child, a tree in the wind -- in fact, any reminder of something deeply felt or dearly loved.

No man is so poor as not to have many of these small candles. When they are lighted, darkness goes away and a touch of wonder remains."

-- "These Small Candles" (attributed to a tombstone inscription in Britain)

It reminded me to take a moment and reflect on what small (and even large) candles still remain in my life. Here are just a few:

Friends and Family

Sweet Notes from my Fiance

Hearing those 3 words....

Flowers to Brighten My Day

Hot Cups of Tea

The Rare Chocolate Indulgence

Comfort Foods

Sweet, Healthy Fruit

Audiobooks (and getting lost in a good story)

Bird Song

Window Views, Blue Skies and Puffy Clouds

Soft Breezes

Beautiful Music That Carries Me Away

Photos of my Niece and Nephew

Little Kid Drawings (made just for me)

Childhood Memories
(that's me climbing our maple tree)

Humor and Things That Make Me Smile

Memories of Past Travels
(This is a photo I took while in Venice, Italy)

Hope for the Future

Dreams --
For it is in dreams that I am almost always healthy.
It is there where I can still walk, talk, run, dance, travel
and even fly.

What are some of your small candles?

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Photos that are not my own are courtesy of weheartit.com or gettyimages.com