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

Finding Grace When "Life is Hard"

When I was a little girl, I remember often being told by a variety of adults that "life is hard." This was most typically said when I complained about something I saw as terribly unreasonable or unfair, such as not being able to eat dessert without first finishing all the broccoli on my plate. While this certainly did seem like a rather cruel injustice, I always found this particular response to my protests a bit puzzling. Was life really all that hard? It certainly didn't seem that way to me. Granted, I may have only had four or five years of experience at the time, but for the most part, life actually seemed pretty spectacular. The repeated sagas over broccoli and other such matters were indeed quite frustrating, but overall, I absolutely loved being a kid. Life was new and exciting and full of wonder.

Yet, adults seemed to repeat this phrase rather consistently, as though it were some long-accepted truth that children just needed to learn as they grew older. And while I did come to understand it in terms of dealing with disappointments, struggle, death and loss, I still didn't quite get why even the smaller issues of life so often garnered this response. Why did adults seem to find life so troubling? Like most kids, becoming an adult was something I looked forward to with great eagerness. After all, it was they who got to make all the decisions and have the final say on every single topic of importance. What's not to like? :)

I understand it now, of course. Children can't possibly grasp the wide range and weight of responsibilities that accompany adulthood. Grown-ups yearn to be kids again, and kids yearn to be all grown up.

Still, I remember thinking that adults didn't often seem to fully appreciate their much-coveted privileges. They even actually sometimes complained about them. They didn't appear to have quite the same energy and awe for life that children did. They had too many bills and too many things on their mind.  There was never any time to stop and focus on the little things.

Struck by this realization one day as a young girl, I vowed to be different. I vowed to be fully grateful for all the special perks of adulthood when I grew older. I would continue to look at life as being grand, not hard. I would make it a point to try not to complain about small, mundane inconveniences.

I confess I am not sure just how well I have done with this little goal of mine over the years. If I am honest with myself, I've probably been far less successful than I'd like to admit. For the most part, though, even when I lost sight of the good in any given circumstance, I was generally always able to return to a place of gratitude.

And then... I got sick. Really sick. My life was turned upside down until it essentially came to a standstill. Everything I had just begun to build for myself was slowly slipping away. From my social life, to my hopes of finishing graduate school, to the career I'd enjoyed and had just started to begin. The more I tried to push past it, the more I lost. As the years went on, simple, everyday privileges that I had not even recognized as privileges (the ability to shower, walk, talk, read, watch TV, get out of bed) suddenly started to disappear.

I actually remember once wondering if God had heard that little, silent declaration of mine all those many years ago and decided to respond with this, the ultimate in a series of complaint-inducing circumstances, as some sort of resounding challenge.

No doubt it has been incredibly trying at times, given the downward turns my life ultimately took, to keep that long-ago vow of mine. It was particularly difficult for me when I first became ill. I saw my life slipping between my fingers at what felt like whirlwind speed, and I couldn’t help but be overwhelmed by it all, especially given how little others (or even I) understood what was happening to me.

Clearly, the challenges of this illness are beyond enormous. It has literally and ruthlessly invaded every aspect of my life. There are times, particularly during setbacks (which, given the nature of this illness, are quite frequent), when I want to throw all positivity right out the window. There is so much loss, grief and frustration to grapple with, not to mention the all-encompassing physical distress that can coincide with such a setback. It can be an arduous task to focus on gratitude when you feel so sick you can barely move.

I often dump my frustrations on my fiance during those times, because I know he understands them. Then I feel regret for doing what I had always vowed to avoid -- allowing myself to whine. My fiance assures me I am not whining, but merely coping, and finding my way through what would otherwise be an intolerable situation. I'm not always so sure, though I do recognize the need to share such emotions from time to time and not keep them all bottled up.

Those of us stricken with this disease face every day the kind of loss, disappointments, deterioration, limitations, struggle and physical distress that most people don't experience until they are near the end of their life. Consequently, it is beyond reasonable, even perhaps essential to coping, to often feel complete and utter exasperation, as well as to at times experience deep sadness over what is lost and what we are missing out on, or on all that could have been. This, after all, is not the life any of us, even in our worst nightmares, ever anticipated for ourselves.

It is, however, still a life. Undoubtedly, this is not the road I chose or would have ever wanted for myself, and there is nothing in this world I wouldn't do to change it.  My dreams, my ambitions, my education, my career and all my former hopes have, thus far, gone by the wayside. That is, without question, a tragedy.  But my life, with all its struggles, loss, pain, limits and difficulties, is still a life. It still has value. It still has joy and love and dreams and meaning and hope.

Today, as I write this, I am so grateful for the grace of my young self who, in her innocent, little girl wisdom, somehow knew that I would later need the constant reminder. I would need the reminder to try to stay focused on the positive even in the midst of struggle, to acknowledge my blessings despite despair, and to take stock of the beauty that surrounds me and that always, under any circumstance, remains visible -- even if from afar. Life is simply too sweet to spend it being bitter.

This has been an extremely rough journey for me. It has tried my patience and endurance in ways that, when healthy, I never could have imagined. And yet, through it all, I need to remember that I've still had birds, butterflies, cactus blooms and beautiful mountains outside my window. I've still had the love of my friends and family and my remarkably wonderful fiance. Despite my body's failings, it still has breath. It still holds my spirit, which, though at times shaken and tested, remains strong and able. And it is with that resilience of spirit that I will continue to hold on to the undying faith that someday, somehow, things will get better.

Even now as an adult facing such difficult obstacles, I still don't think I really agree that life is hard. It's our individual circumstances that are hard. It's not being able to live your life to the fullest that is hard. But life itself is pretty amazing.

In Fifteen Years

I can remember a day when I was 15 years old, sitting on my bedroom floor and writing in my journal. I was upset about something I can no longer recall; no doubt some kind of teenage-related angst that would seem terribly insignificant to me now.

As I scribbled out my frustrations, I remember stopping for a moment, closing my eyes and leaning back against my bed. I envisioned myself 15 years into the future. I would be 30 years old. I would be an independent woman, capable and confident and free to make my own decisions. I would have finished college and graduate school, and would be well into the start of my career. Hopefully I'd be married, perhaps even with a young child or two. My life would be filled with travel and adventure, as well as the mundane but simple things that make life so spectacular. I'd wake up excited to go to work each morning or stay home to care for my children. My husband and I would be sharing in the pride of our new life together. We'd be celebrating holidays with friends and family in our own home, making new traditions as we created what was sure to become an abundance of cherished memories.

Perhaps, in my somewhat young naivety, this vision of my future was a bit overly simplistic in its perfection. Certainly, my life would not be without problems. However, I still can recall the tremendous sense of peace that vision gave me. Whatever troubles I had in the present moment would then be long forgotten. Life would be sweet, and everything would turn out fine.

Unfortunately, though, that's not quite how things happened. At 30, not only was I not married with children, but I wasn't dating. I was not establishing myself in my career, but instead was forced to apply for long term disability. Far from independent, I required assistance with virtually all tasks of daily living. I had already been ill for six long years, and essentially bedridden for nearly two. I could barely speak above a whisper. The only traveling I did was making short trips to the bathroom and kitchen a few times a day, and those few steps were quite a feat for me (they are steps I can no longer take). The memories being created were not of cherished moments, but of struggle and frustration within the four walls of my small apartment as I lay in solitary confinement.

I often wonder now, what I would have thought had I known in that moment, at 15 years old, the truth of how my life would turn out. What would I think now, if I knew the truth of where my life would be 15 years from this moment?

When I think of that young, sweet, innocent 15 year old girl, full of hope and longing, with endless goals and dreams, I want to tell her I'm sorry. I want to tell her I'm sorry for what she did not know would become so many lost opportunities, so many lost dreams, and so many lost hopes. I want to tell her I'm sorry for all the pain she would soon endure, the endless days of sickness that would grow into months and years without a single moment of genuine reprieve. I'm sorry for the paucity of answers that would be offered to her, the absence of a real treatment for any of her symptoms, and the overwhelming frustrations she would face in battling such an all consuming, devastating, and invisible disease. Perhaps most of all, I want to tell her that I'm sorry I couldn't do anything to protect her.

Of course, I want to tell her, too, that despite things not unfolding how she planned, some parts of her story did turn out okay. She still found love with an extraordinary man. She still has many things she can list as accomplishments, even if they aren't the types of things she'd have previously realized or appreciated as such. She still has countless memories and blessings to cherish, close friends and family, and many things about which she can feel very proud. Even when severely limited, life can still have its moments of joy. It can still be fulfilling.

It's now been eight years since my 30th birthday. It won't be long now before I'm 40. If you were to ask me how I envision my future 15 years from today, I would admit I'm not quite as confident in what I see. Life, I've learned, is uncertain. But somehow I still hold that same vision of myself I conjured up so many years ago, and I remain hopeful it is a vision that will someday fully become a reality. It may come much later than I had anticipated, but it may still come. That 15 year old girl still lives inside me, and she is not yet willing to let go of her dreams.

A Personal Lesson in Humility

The CFIDS Association of America recently took a poll in which, among other things, they asked their members what kind of personal stories they were most interested in hearing about. Not surprisingly, somewhere at the top of the list were stories from those who had recovered. People want to hear about what others did to get better. They want hope.

In that light, one can probably anticipate which stories were among those that generated the least amount of interest. Who did they not want to hear from?  People most severely afflicted with this illness. People who are bedridden. People like me.

Those of us fully homebound with this disease can feel so isolated and invisible. We often (quite literally, in my case) don't have a voice. No one wants to hear our story. Not even, it seems, many of our own fellow sufferers.

But really I shouldn’t have been taken aback by this. After all, when I was still working full time, I often came across stories like mine, and for the most part, I didn't want to hear them either. It was too scary and depressing. I refused to believe becoming homebound or bedridden was even a remote possibility for me, and didn’t want to let the idea of it needlessly enter into my mind.

In fact, when I first got sick, I remember I actively sought out only those who had fully recovered from CFS. Not those who had merely improved, but only those who had completely regained their health. I did this because I firmly believed that was the only possible outcome for me.

People who had fully recovered were difficult to find at the time, but I was not deterred by this. If even one person had been able to restore their health after battling this illness, then that meant I could (and would) as well.

But it didn’t quite turn out that way. Not yet, anyway.

If I could do it over again, I would have been much broader in how and from whom I sought advice and wisdom. I would go back and read the stories of those who had become bedridden, and I would listen to what they had to say. There’s a lot to be learned not just in hearing what people felt they did right, but also in hearing what people felt they did wrong. In many ways, I think I would have gained even more insight from the sickest of patients than from those who had gotten well, because their stories would have humbled me. I would have more fully realized what was at stake, and perhaps been better able to let go of the idea that I was invincible.

If I could speak as myself now to the highly determined young woman I was back then, this is what I might say:

First, don’t worry. If you listen to your body -- truly listen to it -- then it’s extremely unlikely you will end up anywhere near where I am now. Second, treat your body like the temple that it is. Eat healthy, meditate, stay only as active as your body allows, and rest when your body tells you to rest. Never put a job, other’s opinions or anything else above your own health. Similarly, don’t let your ego, your pride, your need to please or your desire to accomplish get in the way of doing what your body tells you to do. Letting my ego, my ambition and my need to please others take priority over my own failing health was, I think, my gravest mistake. It is something I still struggle with on a daily basis even today.

Now this isn’t in any way to say that it’s not possible to recover from CFS. While full recovery is  rare, it is most certainly possible. Nor do I mean to imply one needs to let go of ambitions or stop trying to achieve in any way. Far from it. I certainly have not let go of any of my life-long goals and, given my health, I overcome more obstacles now in one day, comparatively speaking, than I did in a full 40-hour work week. It is only to say I wish I’d learned earlier that, contrary to what I’d previously believed, the course that any given illness takes is not solely measured by the strength of your spirit, optimism or determination. If only it had been that easy. It’s about balance. Balance, pacing, and listening.

Of course, finding appropriate treatments (should they someday exist) would be of tremendous benefit as well. 

In the end, I think the most important thing for all of us, no matter what level we are at, is to stay positive, trust that things will get better, and that the answers will soon come. And, without a doubt, to never let go of hope.