Here in AOL J-land there is a significant sub-community of journalers who suffer from diseases and conditions that manifest themselves primarily in pain and fatigue; things like Lupus, and rheumatiod arthritis (feel free to add to the list in comments), which for the most part are invisible to the world at large.
Those of us who are generally healthy cannot understand the trials and tribulations of those who suffer from these conditions. I was going to use a modifier in that sentence; cannot easily understand, or cannot really understand, but the truth is, we do not even have a frame of reference with which to approach understanding of what these people have to go through every day of their lives.
Occasionally, some little thing suddenly reaches out and slaps you in the face, bringing your attention abruptly to your lack of comprehension. For me, recently, it was a post by Dawn, in which she participated in a meme I had stolen from Dan. I got as far as her first answer, and stopped, dead. The question was, "When you looked at yourself in the mirror today, what was the first thing you thought?"
Dawn's answer was, "Damn, I need to put my hair in a ponytail, but my hands hurt." Did it stop you the way it stopped me? Her hands hurt too much to even put her own hair in a ponytail. I have watched my wife put her hair in a ponytail with a flip, flip motion that is so practiced she doesn't even have to think about it. Dawn has to think about it, and some days, she has to decide not to even bother trying.
In order to make an attempt at educating a friend about her condition several years ago, Lupus sufferer Christine Miserandino (how's that for an appropriate last name?) came up with what she called The Spoon Theory. She gave her friend a handful of spoons, and then started taking them away as she described her day. When her friend ran out of spoons before her day was even close to being over, a light went on.
Click on that link, and read Christine's description of The Spoon Theory, then head on over to Dawn's blog, and read about her day to day travails. Another good blog to visit is Loretta's Life Beyond Lupus, where you can find links to many other blogs written by sufferers of Lupus and other similar conditions, as well as many websites explaining the conditions I have mentioned.
As well, if you know someone in real life who suffers from a condition that causes chronic fatigue and/or chronic pain, why don't you pop over and give them a hand with some of their daily chores. Lend them a few of your own spoons. After all, you've got more than you need.
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26 comments:
Great post and it is fitting that you mention that ponytail entry. I find myself now thinking about Dawn whenever I need to open a jar. --Cin
I got a fast lesson on what a disablility was like when I broke my ankle. My very 1st night home from the hospital, I was laying in bed and and had to use my commode. Everyone was asleep. My children had been playing with my wheelchair and walker and left them both out of my reach. There I was stuck in bed...I yelled but no one woke, I knocked on my wall to try and stir my daughter. No one came. It was a very helpless feeling.
The person I relied on most for support and understanding was my friend Cherie, who suffers from MS. I was going from wheelchair to walker to a cane, while Cherie over the years had gone from cane to walker to wheelchair. I knew I would recover and get my independence back, while she would steadily be losing hers. So, I got a small taste of what life for her was like, though not nearly as devasting. All I can say after 'walking in her shoes" just a little, I admire her grace in excepting her disease, nor do I take my ability to do everyday tasks for granted.
You're so right in that it's nearly impossible even to provide a frame of reference from which to relate. The closest I can come is having had a hard time sitting up for about a week after my appendix was out. Which isn't even close.
Simon
Thanks Paul. I like that spoon thing. I might have to try that on one or two people. Normally, I just tell them to roll around in poison ivy, get a really severe sunburn, wrap themselves in fiberglass insulation, duct tape their thumbs to their hands and have someone stomp on their toes when they ask me "Hey Dan? Why are you eating Vicodin for breakfast?" But, the spoon thing seems a lot easier.
Dawn rocks, though. I don't know how she can do it. I can't even imagine doing half the things she does with the aches and pains I have. She's an inspiring compatriot of mine, and I swear, when I win the lottery, she and I are so going to the Bahamas to bask in the sun.
-Dan
http://journals.aol.com/dpoem/TheWisdomofaDistractedMind/
Nice entry. I sometimes have way to much caring in my heart and it hurts. Even watching the news and the horrible things that peole are doing to each other. I have visited Dawn and feel when she writes about her pain.
http://journals.aol.com/mrsm711/LatteDah/ Tracy
I would add this journal to the list http://journals.aol.com/seraphoflove/Pleasedonttakelifeforgranted/ Lisa who is worsening by the day going through unbelievable pain and misery but she is so life loving when she feels better I have felt a little bit transformed reading about her day by day suffering. It seems to be a combination of fibromyalgia and ms. My biggest contribution is just getting by to read their journals, if not every day when I can. This means so much to Lisa. It is about the best thing anyone can do for her because she does put remarkable effort into her journal. Gerry
This is one of the most greatest articles that I have ever read. I love the spoon theory for it is mine daily. I have had 3 heart operations and 2 major accidents. My last ordeal was a stroke which happened a year ago so I can relate with putting my hair in a ponytail but never had the courage to write about my ordeals but you an inspiration to all of us who did so. I will read about Dawn for she was right but I call it the looking glass. Your journal is wonderful but this article reached out and pulled me in on the inside out. Thank you
Patty Ann
http://Journals.aol.com/ridgerunnerP49/simplyjustmyself/
Well said, Paul ... and you are so right. We have NO idea. Thanks for the head's up ... I am off to visit the journals you mentioned. Tina
Compassion is so damn refreshing! :)
http://2writehands.blogspot.com
Dear Paul,
what a compassioante entry! thank you!
love,natalie
Oh Paul! I am actually sitting here in tears. I have been off the puter because I got the dreaded stomach virus... and I started reading my journal entries and here I am, and now I am bawling. Thank you. Thank you... Thank you! I am so grateful to you for doing this entry and really, really affected by your acknowledgement of my meme answer. Yes, sometimes it is hard to get it across, I appreciate your taking the time to say so and thereby pimping my journal.
be well,
Dawn
Dan... I cannot wait until you win and we hit the beaches!!!
Thanks, Dan, for your kind words... and everyone... Thank you.
be well,
Dawn
Paul, I really appreciate this entry. Like Dawn, my tears are coming down as I read it. Maybe this is because so few really 'get' what chronic health issues do to the big picture of our lives, much less all of the small parts of our lives.
A few months ago on a really bad day for me, when my hands were hurting so much, my finger joints so swollen and red and sore, a person very close to me asked how long my hands have been like this. This person was flabbergasted when I said 'over ten years';they'd never noticed how much I was suffering. And they still don't 'get' it like you did in this entry.
Loving you
karyl
What a wonderful post Mr. Paul . . .
I once was told by one of these fellow journalers to "wear those shoes why you can, cus' I haven't been able to put a high heel on since I was 30."
And that made me pause and think . . .
"Damn, I need to get to payless while they are having a buy one get one sale!"
:D
Seriously, this was a very lovely post.
Amanda
http://journals.aol.com/trickeytricky/CountryMyKindaLivin
I have a friend who has lupus too. I just cant imagine being in prison with pain. I cant even imagine wanting to talk to anyone. I applaud them because I do not have that type of strength. I think those that continue to live their day with all they can inspite of a physical set back, staring back with another tommorrow, I admire all of them so much. ~Raven
THANK YOU, Paul...
THANK YOU!
:)
From one of your lupie AOL pals
Loretta
ONE WHO SPREADS THE LIGHT IS AS POWERFUL AS TO THE ONE WHO MAKES THE LIGHT!
Thank you Paul for spreading the Light! Peace & Blessings...Marc
Did you hear that? I'm as powerful as The Big Bang. Woo Hoo!
;)
-Paul
I believe this falls under the " i cried and cried cause i had no shoes, til i met a man who had no feet" . We often take for granted life's little graces until by accident reality brushes against us with tragedy. Then again some of us never see the flipside of life. Thank you for reminding us of our humanity, we sometimes forget the man in the snow as we sit infront of the fire.
Hat tip to you,
http://journals.aol.com/JUSTATHOUGHT/
You are just that powerful Paul.... look at all the responses you have gotten... and I am sure there are more to come.
ps... where is your entry for CarnivAOL?
be well,
Dawn
I think you are right, that we can never understand what another is going through unless we have gone through it. And even then, each one's journey can be very different. Makes kindness and caring all the more important. - Barbara
Paul,
Thank you for this entry. It's not too often that someone can see through another's eyes. I appreciate you putting this out so much. Hugs, LuAnne
Hello,
I found your link via Loretta's blog.
I wish others could see "us" how you see it. You sure have a way with words that are so moving.
Kathy
http://www.LupusMCTD.com
Paul, I am so glad you posted this. I am aware of the spoon theory and explain it often to my kids and friends who do not understand my pain and fatigue conditions brought on by my fibromyalgia and chiari malformation. This was well-written and I hope made some think a bit. Thanks! Hugs, Val xox
http://journals.aol.com/valphish/ThereisaSeason
Paul, this is such a thoughtful post. I don't say that in the abstract. I'm part of the J-Landers who have chronic health problems that can make everyday tasks turn from molehills to mountains. In recognizing that you cannot fully understand you have understood. Thank you.--Sheria
http://journals.aol.com/aimer/on-my-mind
Paul,
I am having a bad week... so I came back here and read this wonderful post of yours over again, and it made me feel better. You are such a great friend and Pat sure is a lucky gal. And, Matt will learn such kindness and compassion from you... great traits for any man.
be well,
Dawn
http://journals.aol.com/princesssaurora/CarpeDiem/
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