Tuesday, August 19, 2008

A Book and It's Cover

There was a time, years ago, when I was no longer working at the magazine and was waiting to find out whether or not I was approved for disability. I was living off of a few hundred dollars a month from unemployment and paying most of that to keep my health insurance up to date. 

The funny thing is, while I was broke, unemployed and disabled you never would have guessed it. I was house sitting for friends that were traveling, which means I was living in a lovely home on Prospect Blvd. that had a hot tub in the back. I was driving my parents' old Lincoln Continental, which fit in quite well with the neighborhood. While I was sick and in pain, at the time I was only using my cane on bad days. In other words, I could pass for any other successful and healthy person on the block. Ahh... the old book and it's cover dilemma. Let's just say mine didn't match.

Back then I found it difficult to explain to people about my life when it didn't look like I was sick. How do you explain to someone that you're limited when you appear to be fully able? That's when I read The Spoon Theory by Christine Miserandino. It's well worth your time to click the link and read it in it's entirety, but the gist of the story is that the author, Christine, was asked by a friend to explain how it felt to have Lupus (an autoimmune disease that is different than mine but with some similar complications).

She gathered up the spoons on the table, gave them to her friend and had her count them up. She explained that when you have an illness you only have a certain number of spoons at the start of your day and each activity you perform requires a spoon. Get out of bed... lose a spoon. Shower... lose a spoon. Make a meal... lose a spoon. Do the dishes... you get the point. So at the start of each day you have to map out and plan a strategy to get everything done and not run out of spoons. Healthy people's spoon supply is limitless. The sicker I get, the fewer spoons I have to start my day.

My friend Scott especially liked the idea of The Spoon Theory. For awhile every time I talked to him he'd ask me how many spoons I had left before he'd ask me if I wanted to join them to do something. It was a helpful tool in allowing people to understand that while I wanted to join in and do everything they were, sometimes there were just no spoons left in my day.

I've been thinking about this a lot lately because I've been missing the days when I had spoons to play with. It used to feel limiting to only have seven spoons at the start of the day. It was hard not to have enough spoons to go to work or sit through a movie or go out to eat. But in the past year my regular teaspoons have been reduced to baby spoons. The kind that have the soft, protective plastic over the metal. 

I have a baby spoon to write this blog, another to take a shower and maybe two or three more to make it through the rest of my day... they are used up by heating up a meal or loading the dishwasher or having a long phone conversation. Every once in awhile I'm blessed with a whole teaspoon of energy and I'll have a friend come over to visit. Days like today, when I'm having the leftover effects of a migraine, the blog post is about all that will get done.

I'm not saying this for sympathy or to have a pity party; it's just a part of my life right now. My point is that even with my baby spoons, you still can't judge my book by its cover. I have a lovely condo that I live in, I have good friends and a cute dog and a car in the garage. The fact that the car battery is dead because I can't remember the last time I was able to drive it is the part of my book that people might not notice. The fact that I would feel like a rockstar if my lungs were strong enough for me to sit on my beautifully decorated patio is something people might miss. Perception and reality don't always go hand in hand... you can't judge a book by it's cover.

I can get just as caught up as the next guy in making snap judgements about people. I can wonder why people are parking in the handicap spot when they look fine, or why they waste gas driving to church when it's three blocks away, or why they're not willing to get involved in their community. But more often than not I don't know their book... I'm only looking at their cover. And I have no idea how many spoons they have to spare.

But as Oprah would say, there is something I know for sure. I know that today, no matter what story your book may tell or how your cover may look, my wish for you is a handful of spoons.

9 comments:

  1. Thanks for the link to the Spoon theory! I think I´m going to use that...
    I have a chronic illness as well and always have a hard time explaining to people how much energy it takes for me to do simple things. It truly is difficult for people to grasp how certain things that are so easy for them can be so energy-draining for others.
    I wish I had a limitless supply of spoons.

    Anyway, I really like your blog and outlook on life, it´s an inspiration :)

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  2. The Spoon story is incredibly effective in getting the rest of us to understand.

    Thanks for sharing.

    My wish for you? A spoon to sit on that patio.

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  3. Good Morning Sara,
    Today is my 61st birthday and I read your blog for the first time today. Maybe it was meant to be. I found you at Pioneer Woman, one of my favorites.
    I LOVED the spoon theory. I am a semi invalid and now have a way to explain to people how Fybromyalgia and arthritis feel. I look great but feel like crap!
    I will be following you now everyday. Keep your spirits up.
    Lila in Atlanta

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  4. Wonderful post, Sara. I'm 62 and am lucky to have been very healthy most of my life. As I have gotten older, though, arthritis makes it harder to do what I was able to do so easily for years. I didn't have that mobility and energy taken from me at such an early age.

    The Spoon Theory helped me to understand what is going on for me right now. Maybe I will find it less frustrating.

    Thank you.

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  5. Hi Sara!

    Your upstairs neighbor here. Just wanted to thank you for using your spoons in this fashion!

    Might I be so bold as to speak for the rest of those who "read" you and tell you that you are blessing our lives by doing so!!

    May our loving Father bless your lovely heart ever more richly and abundantly! :)

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  6. What great perspective! I enjoy reading your blog. May your spoons continue to increase!

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  7. I love your blog and your attitude. I hope I can copy some of your spirit. I am 64 years old and suffer from arthritis, copd, fibromalgia and depression, also obesity 260 lbs. This past week my hubby was diagnosed with lung cancer.We go tomorrow to the cancer specialist. I am scared to death ! Hubby is 76 And my whole life. I need a new outlook on life because he may not be here for me too long. You have such a good outlook and I want to do it too.

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  8. The spoon theory is a good analogy to explain chronic illness, and how debilitating it is. It helped even me who works in the nursing field to better understand this. Thanks!

    ~Sabrina

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  9. Sarah, much love for this one. I am 35 and have Fibromyalgia (I'm feeling you Lila and Doris). When I can, I fight my disorder with diet and exercise, but a back injury has kept me out of the gym for a long time now. I have slipped to something just this side of denial. I take no meds, and I have been feeling guilty for what I can't do, calling myself lazy, and thinking that I don't try hard enough. I am so encouraged tonight to get real about the fact that I just don't have the spoons for everything I ask of myself. I love what you said about the book and its cover too. It has been such a help to me tonight. Thank you so much Sarah. What a ministry you have. I pray God blesses you tonight and in the days to come.

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