Wings of Hope

It's been quite awhile since I last updated my blog. This is in part because my health can make it difficult for me to write extensively or put my thoughts together into any kind of cohesive whole.  Mostly, though, I've held back on writing because I haven't had all that much to write about.  Being sick and bedridden for years on end simply doesn't inspire many riveting stories. :)

However, occasionally, things do happen that differ from the norm.  Indeed, I have had a few somewhat new (and even rather wonderful) experiences in recent months that I would love to share with you.  While many of these are small, ordinary type of events that most people tend to take for granted, they are things that I don't normally get to enjoy. Thus, they hold much more significance for me. 

One such new adventure resulted from a wheelchair ramp we recently placed in our garage. It has quite literally opened new doors for me and given me access to places that were previously out of reach. On days that I am well enough, I am now able to be wheeled outside for brief moments to look up at the gorgeous blue sky and see our beautiful view of the Rincon mountains in the distance.

A new view

Currently, I can't go beyond the garage door and venture further outdoors as I am unable to sit up for more than a few minutes and the bumpy gravel can be a difficult ride for me.  But I am not about to complain. It's been a wonderful change of scenery.  When you have been primarily confined to one or two rooms for over a decade, getting a glimpse of an alternate view for even a few minutes can feel quite liberating.

The ramp has also helped to fulfill another long-held wish of mine.  One of the innumerable things I've missed in all these years of illness is the opportunity to gaze at the night sky. I can occasionally see the moon and a few stars twinkling from beyond my bedroom window, of course, but the view is always partially obstructed by the branches of my mesquite tree.  And while I used to be a night owl prior to falling ill, my health often now forces me to end my day before the sun has even had a chance to set.

However, this winter, while the days are short and night descends over the desert a bit earlier than usual, my parents have more than once wheeled me outside to gaze up at a brilliant display of sparkling stars.  It took my breath away to see all those glittering little diamonds scattered in the darkness.  It is the first time I have been outside during evening hours in 15 years.

Looking up at the stars

I don't know anything with certainty, but seeing the stars makes me dream.”
-- Vincent Van Gogh

I am hopeful that, with the help of the wheelchair ramp, I can continue these new little adventures of mine on a regular basis.  Perhaps, if I am well enough, I may even be able to lie outside in my front yard sometime this spring.  It would, I believe, be a little easier for me than our backyard patio, which has some obstacles to get through that can often cause a setback.  If this new set-up works out, my fingers are crossed that it may make it possible for me to lie outdoors more often, and without as much penalty.

Something else I have missed in all these years of confinement is the wide array of colors you see in the daily experience of simply being out in the world -- in gardens and art museums and in the simple variety and vibrancy of nature.  In an effort to add some of those lively colors back into my life, my mom now makes sure that I always have flowering plants in my room to brighten my days.  I love watching them burst into form, all radiant and iridescent, as if in celebration of their own beauty.

Purple Orchids

White Orchids

Yellow Daisies

In addition to these daisies and orchids, a dear friend of mine sends me a new amaryllis plant each year for the holidays.  I have several whose bulbs are just now beginning to sprout, and I look forward to getting to see their beautiful display of blossoms in the coming weeks.

This Christmas, I was also given a few of those adult-geared coloring books that are so popular right now.  As long as I am careful to pace myself and not overdo, I find they can be a fun way to pass the time when able.  Here's a dragonfly I finished a few weeks ago that I thought came out decently, at least compared to some of the others I did. :) I clearly don't have much artistic talent, but it's nice to feel I am doing something even slightly creative.  It's another way for me to add some color to my world.

Dragonfly

As always, the birds and wildlife also bring me a little beauty each day.  While this doesn't technically count in my list of "new experiences," it wouldn't be a proper update without including a few of my favorite photos of my more recent window visitors -- from the usual finches, woodpeckers and doves to the slightly less common black-chinned hummingbird and Cooper's hawk.

Bird Visitors (click to enlarge)

Another recent treat was getting to have my annual (always far too brief) visit with my best friend and her two daughters over the holidays.  Due to my health, any interaction I have must regretfully be kept to a minimum (generally less than 10 minutes or so) in order to avoid a lengthy setback.  However, thanks to very careful pacing, this was one of the first years in quite some time that I wasn't crashed prior to the visit, and it was nice to be able to interact even just a tiny bit more than usual.  I especially loved getting those precious hugs from her sweet children.  Her youngest, my goddaughter, always comes back into my room for an extra hug before they leave, which never fails to make me smile.

And now for my most exciting news of all!  

I've mentioned previously that, unfortunately, my fiance also suffers with severe ME.  Jim's been sick for over 30 years and is wheelchair and mostly housebound.  Due to our health, our relationship has been forced to remain long-distance. Until this past January, it had actually been eight years since we'd been able to see each other.  However, by some small miracle (and with much help from both our families), Jim was recently able to find a way past the many obstacles to fly out and visit with me! I still can't quite believe it really happened.

Together again at last!

Always so sweet, Jim brought me a rose and some chocolates

In order to help pull this off, one of Jim's brothers kindly offered to fly out from CA to PA and join Jim in his flight here to Arizona (and then back again for the return flight home).  This assured that someone would be there to help Jim through every step of the journey in case he needed additional assistance or encountered unexpected issues.  Jim also flew first-class (and had a reclining wheelchair) so that he could lie mostly flat for the entirety of the flight.  My parents, of course, were also extremely accommodating and went out of their way in order to make the visit as easy and comfortable for both of us as possible.  In addition, Jim's parents helped tremendously by caring for him before and after the trip.

I am beyond grateful to all who so graciously offered their assistance and support to make our visit happen. I'm most especially thankful for Jim, who bravely fought through so many hurdles and risked his very health for us to be together.  I don't have the words to describe how remarkable it was to be able to see him again after so many years apart.  Despite how sick we both were, every moment we got to spend with each other was pure joy.

Of course, I miss him terribly now that he's back home, but I feel so fortunate to have such wonderful, new memories to hold on to and cherish.

My time with Jim gave me a newfound sense of hope. Admittedly, there was a part of me that wondered -- without a cure or a new potential treatment -- if I would ever see him again.  Our health has been so poor over these last many years, and research for this disease continues to be sparse and lacking in much immediate promise.  However, Jim's visit was a reminder to me that, even in the midst of unending struggle, dreams can and do still come true.  Undoubtedly, while my body remains confined by illness, my heart, mind and soul can still find ways to soar.

It is on those wings of renewed hope that I forge ahead with even greater resoluteness, knowing that, despite everything, many more moments of joy, love, beauty and wonder await me.

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?

_____________________________________________________________

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

Small Moments of Grace

Not much happens in my world. The days come and go, the sun rises and then falls again, the seasons repeatedly turn and the traffic outside my window zooms by. As I remain here, sick and essentially motionless, I watch as everyone else hurries to work, to dinner, to a friend's house, or to some event or adventure I cannot partake in.

I long to re-enter the world of the living; to wake up one morning free from all bodily constraints, able to jump away from this bed and the disease which has taken so much from me.

In the meantime, I continue to try to remind myself that my life, with all its physical pain, sickness and struggle, is not without its own quiet moments of activity, beauty and purpose.

A couple years ago, a friend of mine from back east (who also happens to be a former boss, and one of the sweetest people you could ever know) sent me an amaryllis plant for Christmas. I watched in wonderment as it slowly transformed from a tiny bulb to six individual, colorful blossoms.

This spring the plant bloomed for a second time, going from this:

to this:

It's an interesting thing, watching a flowering plant bloom. There's a serenity to it; a sense of wisdom, elegance and quiet patience. I could do well to learn to possess such virtues.

Ironically, I've never been one who was good at resting, nor at being still. Even confined to this bed, I want always to be doing, to be accomplishing something, to know I am somehow still making a difference in the world. I struggle to just be. I appreciate nature's silent and gentle reminders that sometimes there can be beauty in merely being present to what is; to existing, breathing and hoping.

As I struggle with my forced solitude, I am happy to have a new bunny living outside my window, keeping me company. I seem to have a new rabbit living in the front yard with the arrival of every new spring and summer season. So far this particular bunny has been rather quiet, preferring only to be seen in the early morning hours or just before sunset.

Fortunately, the bunny apparently found a safe hiding place when this coyote showed up in hopes of a tasty breakfast.

Even though he probably would have had little interest in me, I was still glad there was a wall to safely separate us. :)

One morning I had the privilege of seeing this beautiful deer strolling the yard. She took my breath away.

I've had my share of the usual window nature sightings as well: a variety of squirrels, gophers, lizards, birds, birds and more birds. Here are a few of said creatures:

I'm told this is an antelope squirrel (not a chipmunk),
but I'm not convinced

Gecko (not to be confused with Geico)

Finch and Cardinal Hang Out

A pretty goldfinch

Hummingbird

Cooper's Hawk

I mentioned in a previous post that, on "good days," my parents sometimes wheel me to their bedroom where I get to have a much nicer view of the mountains, sky and landscape. While those jail breaks have been less frequent than I would prefer, I am grateful for every one of them. It is on those days that I get to see views like this:

The view is even more beautiful in spring and summer when the trees are all in bloom. This photo was taken in winter, and that white stuff you see on top of the mountains (look real close) is snow!

Earlier this spring, my brother, sister-in-law, niece and nephew came to visit, and I got to see them for the first time in two years. Visits are always hard on me, and it broke my heart that I could only spend a few short minutes with them each morning. However, I was so grateful even for that time, as it was such a joy to see their smiling faces every day.

My niece and nephew had grown so much, and I absolutely adore them both. I wanted so much to play with them, to go on adventures with them, to interact and talk and catch up and just get to really know them. I wanted to tell them what a fantastic and super cool aunt I would be if my circumstances were just a little bit different. But, my circumstances ar what they are, and we all made the best of it. I hope I was somehow able to convey how much they mean to me through my silent expressions of joy upon seeing them, and my little whispers and words of affection.

Here's a small collage of photos showing some of their various adventures while they were visiting (all photos courtesy of my brother):

While I was unable to participate, I loved hearing the stories and knowing they were having a good time.

In the last few months, I also became a godmother twice-over. I am already the proud godmother to my nephew, and I am now also godmother to the youngest daughter of my best friend from college. I wasn't able to go to the ceremony, of course, but I was there in spirit, and am privileged and honored to hold the title to such a sweet little baby girl.

Jim and I are still doing very well in terms of our relationship (not so much in terms of our health). I am in continued awe and gratitude to be blessed with such an amazing man as my fiance. I only wish we were healthier, and we could see each other more often.

This past spring made 8 years since we've been writing each other every day. For our anniversary, Jim printed out all our email correspondences from the first month we began writing (back in 2003), and placed them all in a beautiful album for me. It was such a sweet and thoughtful gift, and one I will always cherish.

Speaking of my health, things have been very difficult. Sometimes I prefer not to go into the details because I simply don't want to relive the physical pain of it all over again. This illness is so brutal and so utterly pervasive; there is not a single second of any day that it doesn't dominate or alter in some way. That's why these little moments of escape are so lovely, and so necessary. And that's why I am so grateful every day for their brief but welcomed grace.

The Remaining Sunlight

When I first started this blog, I wanted to find a way to tell my story and speak its harsh reality while still being sure to maintain a sense of hope and optimism. My primary focus, of course, was to raise awareness about how devastating and all-consuming ME/CFS can be, and to show that, though the name may be trivial, the disease most certainly is not.

However, I also wanted to emphasize that we are in no way defined by our illness. ME/CFS may ruthlessly prevent us from fulfilling many of our dreams, but it has clearly not taken away the dreams themselves. People with ME/CFS were once healthy, often extremely active individuals. We were going about our lives like everyone else when we just happened to fall ill -- typically quite suddenly from a viral infection, and certainly through no fault of our own. We desperately want to get well in order to have the privilege of once again living our lives to the fullest.

With these ideas as part of my focus, sometimes (particularly when I'm experiencing an acute crash) I wonder if I may give the impression I handle my illness and my circumstances with greater ease than I actually do.

ME/CFS is brutal. It defies description because it is so far beyond any normal experience of exhaustion or sickness. When faced with such a severe level of illness on a regular basis -- day after day, year after year -- one has no choice but to find a means through which to cope. Over time, I've learned to do this by focusing on the positive, maintaining my sense of humor, and looking within to seek out the small moments of grace. I resolved early on in this battle that I would not let ME/CFS destroy my spirit in the same way it had destroyed my body. And on most days, I do this quite well. My spirits remain strong, determined and hopeful.

However, as anyone would, I have a harder time during a setback. As I have previously stated, it can be quite a challenge to remain consistently optimistic when you feel so sick you can barely move. Not impossible, of course, but difficult.

I recently suffered another long-standing crash. This is my life in the last 14 years, and the nature of this unrelenting disease. Just when I feel like things are improving, I make one wrong move or reach too far, and I am back down again. It's like continuously taking a step forward and then falling a hundred steps back.

While my resolve holds firm, I have to be honest in saying this kind of life can test the extremes of one's endurance at times: the constant battle, the repeated setbacks despite your best intentions, the lack of answers, lack of treatment, the misunderstandings, and the countless downfalls from one wrong movement or one tiny misstep.

I once equated the experience of ME/CFS to what I imagine it would feel like, at least to some degree, to be in an abusive relationship.  However, I would presume that a child who gets brutally beaten every time he/she reaches for a cookie eventually learns to stop reaching for cookies, or to seek out other means so as to not get caught. But what if your abuser (ME/CFS) never, for even one second, leaves your side? And what if your cookie is washing your hair? What if you get beaten over and over again just for trying to get out of bed? For getting dressed? For speaking?

When punished so severely and repeatedly for such minor activity, I can't help but get discouraged. As my fellow ME/CFS blogging friend, Alexis, described in one of her recent posts, I too tend to go through stages. The first is anger and denial. After fourteen years and what has to be literally hundreds of setbacks, I am still shocked when it happens. Somehow, I continuously convince myself that each crash will be the last, and that things can only get better. And then I reach too far beyond that invisible line once more, and my health plummets yet again.

At its very worst, I have been barely able to move. I have had more days and nights that I care to recall where every breath felt agonizing; where I could feel the energy it takes just to swallow. The experience can be beyond brutal. "No," I think to myself when it first hits, "this is not happening to me again. I cannot face this yet again."

After awhile, I have no choice but to move into acceptance, and attempt to find new adjustments and changes to help lessen the severity and duration of the setback as best I can. Once the agony lifts even slightly, I am so relieved to be remotely functional again, to not be in almost intolerable physical distress all hours of the day, that I am able to find some grace in that, and thus return to a place of gratitude once more.

Things are thankfully a little better than when this crash first began, though I am still in the process of trying to bounce back. In light of the fluctuations in my health, as well as some possible upcoming activity that will no doubt require all my energy, I've decided to take a step back from blogging for a little while and try my best at taking my own advice and learning to be more patient with what is.

Blogging has been an amazing experience these last (almost two!) years, and I am so grateful for the improved cognition that has allowed me to participate in a bit more online activity. I feel especially blessed by all the amazing people I have met as a result, and the wonderful friendships I have been able to form. The many letters and comments I have received over the years have touched me deeply, and they inspire me to keep writing. However, at this time, I feel I need to focus more fully on my health. I will still be around here and there, just perhaps not as frequently for awhile.

For now, I will leave you with a few photos of some of my most recent bird visitors (click on the photos to enlarge them). No matter how bad things get for me in my small world, I am always so grateful for the song that exists in theirs. They remind me to keep singing even if my song must currently be silent, and to stay focused on what sunlight still remains to me.

Cooper's Hawk
(he was much bigger than he appears!)

Cooper's Hawk

Road Runner (beep beep)

Finch Singing

Finches Munching

Another Finch Munching

Mourning Dove and Goldfinches

House Finch Flying Above Goldfinches

Hummingbird

Desert Cardinal

Gilded Flicker Woodpecker

"Hey, isn't it my turn yet?"

Two Finches Kissing

Finch at sunrise

Birds sing after a storm; why shouldn't people feel as free

to delight in whatever sunlight remains to them?

--Rose Kennedy

Here's hoping there will soon be more sunlight for us all.