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Posted on 13. March 2014

Enchantment

By Rebecca Zook

I’ve never been a fan of the spoon theory. It just doesn’t resonate with me. If you have or have been around anyone with chronic illnesses, you are likely familiar with it. Imagine each day you are handed a bunch of spoons. They represent the amount of energy you have to expend for the day. You can’t have more. Each activity that you do costs you a spoon. The goal is to make it through the day without running out of spoons. I need to define “activity” because for some people, walking up a flight of stairs, cooking dinner, running to the grocery store or even through the drive-through at the bank will cost them a spoon. Spoon theory is an effective way to illustrate to someone who is healthy what it’s like to live with limited energy.

It just doesn’t go far enough for me. Most people think you can plan ahead what you will be able to get accomplished. You can follow a schedule. If you take a nap, you gain more spoons. It doesn’t work that way. I think a better analogy is to picture yourself walking dangerously close to the edge of the Grand Canyon. You have a degree of control, but a misstep on your part could cause you to plummet to your death. An outside force such as a gust of wind could cause you to plummet to your death. Sometimes you find yourself falling and have no idea why. See yourself walking along that edge and trying to accomplish everything you need to during your day. Can you see it? Now, add fog. Really thick fog, so that the edge is obscured and the abyss hidden, but it’s still there. This is what it’s like to live with chronic illnesses.

Of course, the Grand Canyon is breathtaking. Sometimes you have to wait for the sun to burn off the fog, stand at the edge and marvel at the beauty. Then, jump. Jump by choice. Throw up your hands and say, “Damn it, I’m going to do this, and if I feel like crap for the next week, it was worth it.” That was what I decided last weekend. My husband, Ed, and I had gone out of town for an art show, and Ed wanted to climb Enchanted Rock. It’s an exposed ancient lava chamber after the volcano eroded away. It's BIG. The path is winding and uneven. There are boulders to climb over. 

I had mixed feelings. I wanted to do it, but I was afraid of the abyss; the price I might have to pay later. I was afraid if I made it to the top, I might not be able to get back down. I had all kinds of fears trying to stop me. Instead, I told myself I could turn around at any time. Ed said we could stop and rest whenever I needed to. More than once, I felt like I was gasping for air; my heart was pounding. My legs felt like rubber. I had to sit down repeatedly, and I truly almost gave up, twice. But with encouragement and patience from my husband, I made it to the top. 

On the way down, Ed asked if I was proud of myself. I said, “No. I was a big baby about it.” At least I felt like I was. I complained more than once. I expressed frustration instead of just sucking it up and shutting up. He assured me this was something to be proud of. Yeah, he’s right. It is. I just hope the next time I can keep the fears at bay. I suffered some pain afterward and was worn out for a few days, but it was worth it. I got to see the beauty in the abyss and gain a new perspective - standing at the top of this giant rock.

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Comments (7) -

Linda Thornrose
12:20 PM on Friday, March 14, 2014

What a wonderful way to explain the daily challenges of living with chronic illness!  Thank you so much for sharing your experience and your heart!
God bless you.

Deanna Cross
1:16 PM on Friday, March 14, 2014

As a child I didn't know I was ill, I just thought I was different. And as a young adult--still ill--I was never in the mainstream. Now, with another--this time incurable--disease, I know exactly what you mean as you describe how it is to live with chronic illness.
All the best.

Rebecca Zook
9:16 PM on Friday, March 14, 2014

Thank you  both for your compliments.  :^)

Becky
8:54 AM on Monday, March 17, 2014

I love the way you describe the daily walk with chronic illness.  
When my children were teenagers I came to a decision.  I could either let my illness rule my life, or I could live my life as full as I could; accepting the limits and frustrations with as much grace as possible would teach my children strength, while laying down to whine would teach them a "victim" mentality.  I chose to avoid the latter.

We will take our victories as we can and accept our limitations with as much grace as we can muster.

sandy
11:21 PM on Wednesday, May 07, 2014


I AGREE WITH BECKY AS SHE DESCRIBED HOW WE CAN ACCEPT OUR CHRONIC

STAGE OF ILLNESS AND USE THAT STRENGTH TO TEACH OUR CHILDREN TO BE

STRONG.


Jennifer
2:42 PM on Saturday, May 31, 2014

Thank you for the description! PERFECT! To a "T"! It is worth trying  and yes paying the price later! I hiked with my family up to (Almost) Angel's Landing in Zion's National Park in Southern Utah! It was wonderful, amazing and I met some really nice people on the way up! My husband and the rest of the kids didn't want to wait for me while I took my time getting there. I felt like the tortoise and the hare story. But that is ok, I made it and felt super glad that I made it as far as I did! One up for the Angels!

Linda Thornrose
6:54 AM on Sunday, June 01, 2014

Good for you, Jennifer.  I went to Yosemite on my annual trip home to CA last summer.  I would have pushed myself harder, but had my 84 yr. old mom with me and she didn't want to walk anywhere, so I was left behind with her.  However, I did make it on the long, fairly steep (especially to those of us who live in flat Florida!) hike to Glacier Point!  It was so worth it and so beautiful...and Mom did go on that walk...it took a long time, and all who were with us just went on and ran all around while we did our slow trek.  So wonderful.  We try to get to Yosemite every year when we go home to visit our family.  As long as I am able to 'count the cost' and plan for a rest, I do try to push myself for special trips or events, and I will for as long as I am able.  I hope to see many of the national parks in the west now that my hubby and I are retired.  I love traveling.  Any ideas from any of you about how to get more days (between IVIG monthly treatments)squeezed out for travel?  I hate being limited.  I have tried SVIG and it didn't work for me.

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