Saturday, November 26, 2011

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 or


  1. Oh Laurel, we will miss the insights you share with us...I hope you will not be gone too long. Your courage astounds me and always brings me back when I lose my focus. I am so sorry you have gone through so very much. Your photo display of candles is beautiful! I know it takes alot of your energy to even share here. It makes your words even more of a treasure.
    My own candles? Family, friends, having Joel here with laugh with and cry with..I am so very very grateful for his presence, God, my laptop and blog world, books that bring me a new perspective and help me grow and stretch...books that take me into another world...the view from my window...neighors who share the paper with us, my wool comforter, our comical dog. These are a few...

  2. Hi Laurel,
    Your post made me cry. I was just talking to a friend about this the other day- about the things I used to be able to do but can't any longer. I have accepted my condition, but I think I may still be grieving. I don't know if this process- the mourning of a life we no longer have- is supposed to last forever or dissipate with time, but as you say, shifting our thinking is the only way we can continue living peacefully with this illness.
    I love your candles. They're beautiful. I really admire your courage and determination. You have inspired me to make a scrapbook of my own candles... What are they? My husband & children whose energy I live through, vicariously, pictures of my friends and family, my old diaries, the changing of the seasons ... so many things!
    Thanks for this.

  3. Hi Laurel

    I think of you so often - I wish these thoughts could in some way be exchanged for health tokens for you!

    You are so brave and gracious, but I dream of the day when you don't have to be these things, or if you are it is for a different life challenge.

    As I continue to improve, I constantly remind myself to appreciate every queue and every 'normal' daily challenge, knowing it is a privilege to be in this position.

    Lots and lots of love to you gorgeous

  4. I can 100% relate. I have so many candles despite being bedbound (majority of the time, one of my huge candles is I can now go downstairs sometimes after years of not being able to), having had a 'normal' happy early childhood (I got ill at 11) is another very big candle, I look at Post Pal kids tiny kids who should be playing and instead are being pumped with chemo only to pass away when it stops working and feel lucky. Its my birthday just before christmas, i find getting older hard (this is birthday 10 or 11 in bed which included my 18th and 21st), birthdays remind me that another year has slipped by, a friend said "Im not ready to be old, ive not been young yet" which is how i feel, it scares me getting old and still not have brought my first legal drink, driven a car, gone to work etc and all the other things you miss out on, but then i tell myself its a privledge to get old and so many kids and young people wanted to get old but never were able to

    1. @Vikkilouise
      - Your post was really touching. PostPals is a really awesome charity - it's inspiring that you can do so much for so many, despite being bedbound.

      So much love, and prayers.

  5. Thank you for your beautiful words and photos...and the reminder to pause and take a moment to appreciate what remains. I needed that reminder today. You are one of my candles, Laurel! -- K

  6. Oh Laurel, am I allowed to be just a little angry for you? It seems so terribly unfair for you to take all this hardship with such sweetness and grace and not be rewarded with at least the slightest improvement. I want you to get better SO much!!!

    As K said, you are definitely one of my candles, and I will light a Christmas candle and make a wish for you!

    @vikkilouise: Your comment touched me very much. It must be so much harder to get so ill so young and I hope you will get to do all those things one day.

    Love to all,

  7. I'm with you all the way here, Laurel.

    I've been all the way down to the not being able to speak above a whisper or turn over. When I was there, like you, I thought that I'd never complain if I could just get back a slightly better place - for me it was to get back to the point that I could occupy myself most of the time by reading on the computer (books are too heavy to manage). I'm there now, and it's blissful compared to where I was.

    Right now I'm able to shift from bedroom to dayroom and back again in the morning and evening, and it's wonderful to be able to have the change of scene. I'm so grateful for that.

    I know people who are not ill like this have a hard time imagining how anyone could be happy within such a circumscribed life, and how getting even a little improvement can make it feel so expansive, when it still looks so small.

    One thing Chimp, my husband, says in this regard is, "Let the good days be good, and the bad days be bad." And you've said it so well here - life can be much brighter if you can manage to focus most of the time on the small candles, and not the enormous loss.


  8. Laurel, I worry about you a lot, and I'm glad to see that you are able to find little bits of happiness, little glimmers, here and there.

  9. Lovely post Laurel,
    I hope you are able to gain a little health over time and enjoy some of those things again. I appreciate that I don't live alone any more and have someone to do those things I cant - groceries, for example. Also very thankful for my dog who is here right now sleeping with her head on my lap....also the community of fellow sufferers (like you)who truly understand how difficult it is to loose all that we have...

  10. Thank you for another great blog, Laurel! Especially as we approach the shortest day of the year, it's good to be reminded that no amount of darkness can snuff one small candle.

    I give thanks for all my bright candles!

  11. Wonderful, inspiring, thought provking post (as usual) Laurel! I struggle constantly to maintain my perspective. Thanks for the reminder!

  12. Beautiful post laurel, loved looking at your candles, like others have said here, you are one of mine & of that I'm truly grateful. I hope for better days for us all. Much love Vikki W xxxx

  13. Laurel,
    You are a beacon of light!

  14. Thank you so much Larel for your inspiration to all who are suffering. I think of you often. This was just beautiful!! I do have hope that we will have better days ahead!!! Thinking of you:):):)

  15. Oh Laurel, I needed to hear this so much ... to be reminded of the reasons I've kept fighting up until now!

    Thank you for sharing this with us. Know that you make a difference in my life!!

    I hope for both of us that there will be bigger candles in our near future! ((((Laurel))))

  16. What a lovely post, Laurel. Thank you for your reminder that however bad it gets there's always something to be thankful for. And knowing that you are an encouragement to others should be one of your candles too.

    This year my health has improved a little bit, thanks bizarely, to developing diabetes on top of the ME, as the treatment for that has somehow given me more energy. It's not sustainable - I still need to rest every day and wouldn't be able to work or go to see a film - but for the first time since I was diagnosed in 1999 ... I can run up the stairs! I never thought that would be something to get excited about, but I am - it thrills me every time I do it.

    Please don't ever give up hope. I hope for you that there will be no more setbacks, and that one day soon you'll be writing here about reclaiming the things you used to take for granted.

    In the meanwhile, I wish you all the best for Christmas. I hope you are well enough to celebrate a little, with some of your candles.

  17. Thinking of you Laurel. Hope you were able to have a good Christmas weekend and I wish you healthy wishes in 2012! I really enjoyed this true about all of us. Take care.

  18. I'm way behind in my blog reading so I'm just getting to yours Laurel. This is a powerful post. One I have been thinking about alot lately. Thank you so much for the reminder.

    I hope and pray the holidays did not set you back and that your strength is rebounding.

    I miss you my friend. love and hugs

  19. Laurel,
    This is a really touching (and inspiring post). It's gotten me to think about my own candles in life - when you have Severe ME it's about learning to nurture the candles so that the lights keep shining a little bit longer after everyone else's have run out; I've been feeling so demotivated lately and your post has really helped put thinks in perspective.

    So much love coming your way. Here's to a better year ahead.


  20. I miss hearing from you, Laurel. I hope you're doing okay.


  21. Just thought I'd stop by and say "Hi"...hope you're doing OK these days.

  22. Laurel, thanks for sharing your inspiring thoughts. I makes me realize that even though I feel miserable, let's appreciate I can still get out of my bed, shower and sometimes get out in the garden for 10 minutes. I wish you all strength you need to be able to cope with your limitations. I'll send a little bird to the tree next to your window and whistle a nice song ;-).
    Fatima, I love the idea of making a scratchbook with all my little candles in it. I hope it will make me aware that there is still a lot to go for. With this horrible disease feeling hopeless and desperate is always around the corner.
    Thanks for your inspiration girls and Laurel hope to see you back soon.