Tuesday, May 28, 2013

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.

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