Curiously Seeking Beauty to Escape the Dark Chocolate Downs of Chronic Illness

Baby hedgehog in box of chocolates.

Found on

If life is like a box of chocolates, my chronic illness journey has not been all gooey caramel centers.  I have experienced many coconut bumps, raspberry hurdles, cordial cherry bruises, and just plain dark chocolate downs along the way.  This is normal. (No offense to you if the preceding list is all of your favorites.  This particular selection for me would warrant tossing the box or giving it to my brother-in-law, who will eat anything).  Yes, through the years, I often still found reasons to smile and laugh and even had some good times, but there were also some very low times.  Again, I say, this is normal.  People need to hear that.  So often we hear about those who have been ill or faced a disability and how they never let it get them down, how they were always so positive.  Schweenie poo.  It’s a lovely sentiment, but it just isn’t true.  We all have our downs.  What people saw in that positive person was them working through their downs, perhaps even clawing their way through it, with a happy face.  But, I guarantee that if you were a creepy peeper, there were times you would have seen that same person behind closed doors with a not-so-happy face struggling with thoughts that weren’t so bright.  In fact, if we really think about it, we do not admire these people because they were always “up,” but rather because we know that they had a great-heavy burden weighing them down and they were somehow, at some point, able to rise.  The truly inspiring ones even seem to exude an inner wisdom and strength.  We seek them out, ask them for advice, read their books, and make movies about them because they have something that we want – the knowledge of how to overcome suffering.  Because, once again, we all have burdens, trials, and suffering in our lives.  If we could just figure out what these people know then maybe our suffering wouldn’t be so great and life would be better.

There is an idea in many spiritual circles that once we understand suffering, then we will no longer suffer.  I had come to a point many times where I accepted that I would suffer, but I still didn’t understand the suffering and found myself asking, “Why?.”  Just ignoring the suffering or engaging in instant gratification delights sometimes worked for a little while, but I’d wind up right back in my coconut filled hole, pondering the meaning of life.  I knew I wasn’t learning from this experience, at least not enough, and I wanted to.  I’d seek out information from the “greats” but still wouldn’t get it.  I’d have moments where I’d literally cry scream out to God and the universe (and probably a few neighbors who already think I’m crazy), “What am I supposed to learn from this?!  I’m not getting it!  Would you just show me already so I can move past this suffering?.”  As I said, I wasn’t getting it.  Life lost its luster and my days felt dull.  It was in this dullness that I realized that I no longer felt passion or excitement for life.  However, I didn’t know how to overcome this.  It seemed that in my altered physical state, my pain, fatigue, and other symptoms wouldn’t allow me to participate in the interesting things in life.  I could still see the chocolates with the gooey caramel fillings, but I could no longer eat them.  I felt lied to by the message that I grew up with- that, “You can do anything you put your mind to.”  Sure, this type of thinking has encouraged many great feats, but I now knew moxie could only accomplish so much.

Schweenie puppy looking out rainy door

Schweenie Eleanor Roosevelt pondering the meaning of life, or why she’s inside when all the good sticks are outside.

Enter Eleanor Roosevelt.  Yes, my Schweenie puppy.  You remember her, right?  Of course.  There’s no forgetting that adorable fluff ball.  If you read Chronically Rediscovered Chapter Three, then you also remember that she inspired me to read a book written by The First Lady Eleanor Roosevelt, You Learn by Living.  In the book, Roosevelt says:

For curiosity, interest, and a longing to know more and more types of experiences are the qualities that stimulate a desire to know about life and to understand it.  They provide the zest that make it possible to meet any situation as an adventure.  Without that spirit of adventure, life can be a dull business.  With it, there is no situation, however limiting, physically or economically, which cannot be filled to the brim with interest.  Indeed, without interest, it is almost impossible to continue to learn; certainly, it is impossible to continue to grow. (You Learn by Living; Eleven Keys for a More Fulfilling Life, p. 13).

Huh, maybe God was throwing me a bone after-all.  Perhaps I should have gotten a dog sooner.  The First Lady Eleanor Roosevelt definitely had that exuding wisdom thing down.  My Schweenie’s got a lot to live up to.  Right now she’s in the back yard digging up dead worms to eat, so I’d say she’s well on her way.  Not even four months old and digging up worms.  Dead ones.  And eating them.  I doubt the First Lady was digging up dead worms to eat at four months old.

So, I knew I needed to learn and grow and I knew I wanted life to be shiny again.  To accomplish this, Eleanor Roosevelt was telling me that I needed to find interests.  But what interests?  We already discussed that the caramel-filled chocolates were out of reach.  What is there to do but read on?  Just a couple pages later, Roosevelt says:

All you need to do is to be curious, receptive, eager for experience.  And there’s one strange thing: when you are genuinely interested in one thing, it will always lead to something else.  (You Learn by Living; Eleven Keys for a More Fulfilling Life, p. 15).

Owl and cats

Found on Wallbase

Unfortunately that’s part of the problem – my lack of genuine interest.  Roosevelt says you don’t need to look for interesting things in life because one will just lead to another.  But, I needed one to start.  What’s a girl to do?  I decided to focus on the other part of the suggestion: to be curious.  Sure, my days were limited.  I spend most of them in my house, but there had to be something that would come my way that I could learn more about.  And there was.

I decided to start embracing things unfiltered.  Usually I’m so aware of my spoons and limited usable time that I wouldn’t be open to such a use of my resources, but I decided to look at this experiment as an investment and leap in with both feet.  Luckily the internet exists to make this process much easier.  I’d read a post on Facebook about something I knew very little about and would usually have no interest in, but instead of scrolling past, I’d ask more or look it up.  One of my cousins was sick and I jokingly told her that she should make a hot-toddy.  Then I realized that I had no idea what was in a hot-toddy, so I looked it up.  I think you’re getting the picture.  No, not everything that came my way was “interesting,” but my curiosity did pay off in that one topic did lead to another and a path of interesting possibilities began to open-up.  As I mentioned in Chapter Three, around this time I also discovered Pinterest.  Pinterest is wonderful for this chain of curiosity.  Put a pin in that tidbit because we’ll return to it soon.

Gold statue in France.  Eifel Tower in the background.

Found on

Roosevelt also discusses surrounding oneself with beauty to spark curiosity and the imagination.  She actually directs this suggestion toward mothers to help educate their children.  (I’d like to think that if she were writing today she would be directing this comment at both genders).  In many ways I am like a child again, born into this chronic illness life and trying to learn what the rules are.  Roosevelt mentions that French children can’t help but be inspired, at least subconsciously, “…being surrounded by the things of the past, palaces of bygone kings, statues, remembrances of history.” (p. 19).  I knew I wasn’t going to be able to put a statuary in my back-yard, but  I could bring some beauty to the everyday things in my life.  Which brings us back to Pinterest.  Besides housing a wealth of beautiful pictures that you can allow to soak into your subconscious, it also has some stellar ideas for beautifying the little things.

Mason jar storage system

Found on Originally pinned from Weeping Cherries.

While perusing some of my friends’ boards, I came across this picture using Mason jars to help organize items in the home.  The picture wasn’t readily labeled, but a few clicks later, I at least had a list of materials: wall molding, hose clamps, and Mason jars.  I had some Mason jars left over from a Christmas present I received (thanks Beth!).  But, what the heck were hose clamps?

I showed the picture to my husband, Mike, who immediately said, “I can do that.”

I then read off the list of the materials.  Mike: “Yeah…” followed by a look of, “why are you telling me something so obvious?”

Me: “You know what hose clamps are?”

Mike: “Yeah.”

Me: “You know where to buy hose clamps?”

Mike: “Yeah.  Home Depot.”

Boys are cool.

So a few drives to Home Depot and some spoons later our scary utensil drawer went from this:
Cluttered kitchen utensil drawer

To this (we also made a removable matching divider for inside the drawer):

Mason jar storage system for kitchen utensils
Organized kitchen utensil drawer

Close up picture of Mason jar storage system showing wall molding detail.Close up picture of organized kitchen utensil drawerAnd the result?  I do find it beautiful.  I like the leaf pattern and curves of the wall molding, and the fact that when you open the drawer, you have an organized space, which is visually pleasing, with the added surprise of the matching molding.

And the moral of this story?  No, I haven’t discovered the meaning of life and I can’t tell you definitively why people suffer.  But, I have rediscovered my curiosity and my kitchen is not so coconut-filled and dull.  Perhaps if I keep following this chain of curiosity, I can learn, grow, and ease some of life’s burdens.

May you too find something curiously beautiful today.

Schweenie Eleanor Roosevelt running through flowers.

Schweenie Eleanor Roosevelt curiously seeking the beautiful.

Thank you for reading! 

Related Articles From This Site:

Schweenie Eleanor Roosevelt on the playgroundFind out why I started reading a book by Eleanor Roosevelt in Chronically Rediscovered Chapter Three: Crashing into Inspiration and Lasik Eye Surgery.

boy with spoons on his headLuckily I still had some spoons to put in those Mason jars!  Read Spoon Thief: A Humorous Poem Based on the Spoon Theory, an Explanation of Chronic Conditions to find out where my other spoons have gone.

Woman with Out of Order sign on her headMedication side-effects can add to the emotional difficulties of Chronic Illness.  My Keppra for my seizures particularly has this effect.  Check out Keppra- Grape Flavored Brain Drain and Mood Swings in a Bottle.

Related Articles From Other Sites:


24 thoughts on “Curiously Seeking Beauty to Escape the Dark Chocolate Downs of Chronic Illness

  1. Tosha, excellent essay. I get it as I live it daily. You are a gifted, creative writer and inspirational as well. I also noticed the beauty you added to this post via photos. The result captures the reader. Further, the spoon video so clearly explains what I have not been able to. I forwarded it to my family and friends. I am living the spoon theory! Maybe they will now understand more about the new Cary and get a glimpse of what is important in their own lives. Thank you . . .

    • What lovely comments about my writing. Thank you Cary! And I do try to find pictures that enhance the topic (and add some humor with the hidden captions), I’m glad the effort is appreciated!

      I’m also glad that you were able to relate to this essay and the Spoon Theory video. That’s exactly what I hope for when I post them. The Spoon Theory is such a simple but perfect way to explain our situation to “normies.” I’m really glad that Christine at posted it and is doing so much to raise awareness about invisible illness. Like you, before coming across the Spoon Theory I didn’t know how to explain this “new” life. I hope your family found it helpful too.

      Thanks for reading and commenting!

  2. I appreciate the shout out and I’m glad you still think boys are cool. I know we have our moments sometimes.:-)

    • Boys are pretty cool. I’m assuming they teach you about things like hose clamps in the same secret class where you learn how to fix anything with duct tape. Thanks for sharing your coolness with me and our kitchen!

  3. This comment is largely off-topic, but I have that SAME dinosaur pasta spoon!!! And I LOVE IT! OMG.

    Annnnyway….very lovely essay, very personal and very true. I’m glad you really re-iterated that the downs are normal. It doesn’t make them bearable, but it does help. 🙂 Thanks for the great post!

    • Pasta-Saurus is never off-topic. He’s awesome! 🙂 I love him and our man ice cream scoop. It’s nice to have the little extra things to make you smile.

      And, I agree with you, it is nice to hear that the downs are normal. I have to remind myself of this point. It’s so easy to feel like we’re “failing” at being a good sick person if we ever get down or struggle.

      Thanks for reading and commenting!

      For other Bottled Time Travelers reading this comment, Rachel also has a blog. Check it out:

  4. Pingback: I Do Tricks for Treats!: My First Experience with Cimzia for Inflammatory Disease | Bottled Time – Living, Loving, Laughing, Learning, and Growing through Chronic Illness and Pain

  5. Living with chronic pain must be terribly debilitating, and I admire your spirit. Sometimes it may be that there’s a blockage to being able to feel life deeply, that can get in the way of being deeply touched by the beauty, and the pain, of life. I was diagnosed with Lymphoma 2 years ago, and I tell you, that diagnoses was a wake up call. Suddenly the air never smelled so sweet, my partner who I’d been fighting with became the love of my life again; every little thing seemed precious. I’ve since lost the impetus that opened my eyes and my heart, and so it’s regular thing – seeking what it is that gets in the way of joyous living. And sometimes it is this divine discontent that pushes us beyond the ordinary confines of our lives to seek that mysterious ‘something’ that will give meaning to our lives. For me, great music, great art, and Nature have been a light that has at times, helped to illuminate those darker days…

    • Chronic illness and pain have definitely pushed me to explore new perspectives on the greater questions in life, and to find new ways of enjoying life. Living as a Spoonie means that a lot of the base lessons we learned about what life is “supposed” to be like, no longer hold true. If we no longer are able to approach life through those lenses, then we need to find new lenses. Not easy, and not a one-time process. But, sometimes the view through those lenses can be so beautiful, and are something that we never would have seen if kept our old ones on.

      I too find nature, music, and art illuminating. One of the things I’m grateful for in my crazy chronic life, is that I have been able to explore these in ways that I never would have before.

  6. Love your thoughts on this topic! I also think alot about these greats of chronic illness, and how they do it. Ive just read a book called ‘Doing Well at Being Sick’ by Wendy Wallace – it was so encouraging. Wendy has had practically every illness there is – but she deals with it like a saint. Great book, but part of me felt a bit like – why am I not like this?

    • I will have to check into that book. The whole comparison thing gets tough though. We want to be inspired but too much comparison inevitably leads to sadness. We need to remember that we are not seeing/reading the whole story and that we can do better to decide “How can I personally make this moment meaningful?,” which might mean learning to relax and find joy in the down times/pain rather than doing something book-worthy.

      • Oh my God you’re so right! My mentally is always ‘what I can I achieve with this time?’ Not that im a huge achiever by any means, but Im always trying to do instead of be. Ive been feeling like I need to learn to relax – thank you for the encouragement.
        Definitely too much comparison is a bad thing – and my mood seems to depend on the comparisons i make lately. Though Im not sure whether this comparison thing is normal and inevitable, or abnormal and preventable.

      • I think it is inevitable to a degree, but I think we can also learn new ways of thinking and better ways to handle comparisons when we have them. I hope so anyway. I’m trying to learn to be inspired and not guilt trodden during these instances. And also to approach them with a better sense of reality in that we never know anyone else’s whole story and that everyone’s reality is different.

    • What a fun award! Thanks Lucy. I’ve been out of Internet range for awhile and this is a lovely thing to come back to. My next blog post will cover this. Hope your holidays were grand and 2013 brings you much beauty.

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