In the world of chronic illness, more specifically invisible illness, the Spoon Theory abounds. Written by Christine Miserandino, it basically attempts to explain what it is like to live with deep fatigue and other chronic illness symptoms. In a nutshell, you start the day with a set of spoons to use throughout the day. A healthy person might use a single spoon to take a shower, but someone with chronic illness might blow through four spoons trying to get clean.
That's me.
I feel dirty, socially, these days because I only shower every other day. Even with walking and getting all sweaty. On the days in between, I take a washcloth "bath." I've become adept at that and do feel good afterwards, but I become ashamed when I think about the fact that I no longer shower daily.
But I digress.
Basically, those with chronic illness oft run out of their daily allotment of spoons before the day's end—sometimes within just a few hours—and oft doing things others would not find difficult, such as changing clothes or making a meal. In the chronic illness community, folk oft identify themselves as "spoonies" and address their posts to their "fellow spoonies."
It is almost sacrosanct this theory. However, I have never thought that it fit my life. Plus, as an ex-literacy professor, I find the analogy wanting. I mean, first, what in the world do spoons have to do with energy? Or other symptoms? I honestly haven't been able to connect with the theory or with folk who are "spoonies." I think identifying yourself as that is just plain silly. But, oh my! If I ever wrote such things in any of the support groups I'm in, I'd be booted before the post was a minute old.
My dear friend Celia sent me this post the other day, entitled the Matchstick Theory. The author had me at the title! I mean, my goodness, what a better metaphor! Spoons you can reuse, even if you merely lick one or wipe it clean with a napkin. Matchsticks can only be used one. And, as Psarah Alice points out, it is possible for a matchstick to break before it can even be used. Or it might be a dud when struck.
If you click on the link, you will encounter strong language, including that one word four-letter word that seems to be unforgivable in some circles. To me, it is just a word. And, to me, it is one that can express the shock and overwhelming anger and despair of the moment ... at times. Perhaps it is merely speaking such a forbidden word. But if you feel harmed by reading it, then DO NOT read the linked article.
To me, though, such language aside, it is a theory that speaks to me, to my life. It fits ever so much better. Everything is harder. Trying to explain that is just plain frustrating. Especially because you always encounter the "But I've seen you _________!" Yes, whenever I get a spate of energy (usually fueled by upsettedness) I will work to be productive or take control of something (such as organize, downsize, or clean) to offset whatever is distressing me. I know full well what it will cost me, but I don't care if I'm flat on my back for a while. I'm using the upsettedness to serve me rather than to fell me.
The price I do not count and one that wounds me is that "But I've seen you ___________." I think that "best construction" mentality would be that the person is genuinely confused and just not thinking about his/her words. But it comes across as disbelief, as accusing me of lying. Of course, the honest response would be: I know my life and choices don't make sense, but neither does a living a life with chronic illness.
Some of its insanity is spelled out in the Spoon Theory as examples. And the Matchstick Theory has even better ones (in my opinion). I sometimes try to give my own, but the words sound hollow in my own ears. Even to say that I am exhausted doesn't have the meaning that it should.
Below is an excerpt from the the Matchstick Theory, with a bit of strong language but not the most objectionable. It is enough of the post to get the gist. And, maybe, understand why I was so thankful that Celia sent it to me.
In the sending, I hear her say: I see you, Myrtle. I hear you.
The first time I read Spoon Theory, like many others, I was inspired. As a woman who has dealt my entire life with chronic pain what grabbed my attention first was the friendship between Christine Miserandino and her friend. In any true friendship one doesn’t just share the joys and pleasures of life. One seeks to share in the pain, to understand it, and if possible to help hold that pain for the other.
Christine had this kind of friend. A friend that knew her inside and out, had earned the right to ask “what does it feel like to be you.” I have that kind of friendship with my girlfriend Dia. She knows me inside and out. The first one to visit me in the recovery room after surgery. The one that comes over and massages me on days when my arthritis is so flared I can’t move. Hell, she even flew all way home from Texas for one of my surgeries and then planted pink flamingoes in my yard as a welcome home surprise before she left. Dia, like Christine’s anonymous friend, has earned the right to ask “What does it feel like to be you?” and expect a full and honest answer. I fully believe that everyone should feel free and easy to seek knowledge about another’s life experience and asking questions is a great way to do that. However, I also whole heartedly believe that one has to earn the answer to that question.
And that is where I have a problem with Spoon Theory. Suddenly the whole world thinks they know what it’s like to be me. Except you don’t. Now we have all these dickheads running around handing out spoons, embroidering them on samplers and asking me in a condescending way “how are your spoons today?” I’ve grown so tired of spoons I’ve started eating my Lucky Charms with a fork.
Look, Spoon Theory is great and has inspired many of us, given us a safe, friendly, non-confrontational story to share with the people we love and who are also there for us every day. The good days and the bad. The happy times and the bat shit crazy times. Forgive me for saying this, but the rest of you don’t deserve a nice, safe, friendly and non-confrontational story. For those of you that have never suffered (or suffered with someone who had) chronic pain, I give you Match Theory.
Imagine waking up each morning with one fresh pack of matches.
Get out of bed? Strike a match.
Watch it burn.
Will it burn long enough to make it down the hall to the Bathroom? Most Mornings? No. It will not.
Strike another match.
See I can get a lot of use out of a spoon. Most people can and do. That’s why the spoon analogy doesn’t work for me. I’ll use it to stir my coffee, eat my fruity pebbles and then grab out of the sink later to eat a whole tub of cookie dough. But a match? A match is a one-use item and it’s time is finite. Like my body and it’s go juice.
Sometimes the unexpected happens. Strike a match? It breaks mid strike.
Somebody with no placard has taken the last handicapped spot in the lot. The snow plow cleared the parking lot but left all the snow piled up in the handicapped access, leaving no clear egress to the sidewalk.
Some mornings you wake up with a full pack of matches but some rat bastard has ripped off the striker. You’re not going anywhere today. This is what we call a flare up. The disease has your body in a vice and you probably couldn’t strike a match if you tried. There are many reasons for a flare. It could be a sudden shift in the barometric pressure; that late-night freak snowstorm the weatherman forgot to mention. It could be stress. Your boss has warned you that project must be on her desk by end of day yesterday. Or it might just be that deep-fried pizza you ate all by yourself last night.
Then come the mornings where you wake up to the smell of sulfur. That last spark from last night’s last match has landed on today’s matches and incinerated them.
The first time I read Spoon Theory, like many others, I was inspired. As a woman who has dealt my entire life with chronic pain what grabbed my attention first was the friendship between Christine Miserandino and her friend. In any true friendship one doesn’t just share the joys and pleasures of life. One seeks to share in the pain, to understand it, and if possible to help hold that pain for the other.
Christine had this kind of friend. A friend that knew her inside and out, had earned the right to ask “what does it feel like to be you.” I have that kind of friendship with my girlfriend Dia. She knows me inside and out. The first one to visit me in the recovery room after surgery. The one that comes over and massages me on days when my arthritis is so flared I can’t move. Hell, she even flew all way home from Texas for one of my surgeries and then planted pink flamingoes in my yard as a welcome home surprise before she left. Dia, like Christine’s anonymous friend, has earned the right to ask “What does it feel like to be you?” and expect a full and honest answer. I fully believe that everyone should feel free and easy to seek knowledge about another’s life experience and asking questions is a great way to do that. However, I also whole heartedly believe that one has to earn the answer to that question.
And that is where I have a problem with Spoon Theory. Suddenly the whole world thinks they know what it’s like to be me. Except you don’t. Now we have all these dickheads running around handing out spoons, embroidering them on samplers and asking me in a condescending way “how are your spoons today?” I’ve grown so tired of spoons I’ve started eating my Lucky Charms with a fork.
Look, Spoon Theory is great and has inspired many of us, given us a safe, friendly, non-confrontational story to share with the people we love and who are also there for us every day. The good days and the bad. The happy times and the bat shit crazy times. Forgive me for saying this, but the rest of you don’t deserve a nice, safe, friendly and non-confrontational story. For those of you that have never suffered (or suffered with someone who had) chronic pain, I give you Match Theory.
Imagine waking up each morning with one fresh pack of matches.
Get out of bed? Strike a match.
Watch it burn.
Will it burn long enough to make it down the hall to the Bathroom? Most Mornings? No. It will not.
Strike another match.
See I can get a lot of use out of a spoon. Most people can and do. That’s why the spoon analogy doesn’t work for me. I’ll use it to stir my coffee, eat my fruity pebbles and then grab out of the sink later to eat a whole tub of cookie dough. But a match? A match is a one-use item and it’s time is finite. Like my body and it’s go juice.
Sometimes the unexpected happens. Strike a match? It breaks mid strike.
Somebody with no placard has taken the last handicapped spot in the lot. The snow plow cleared the parking lot but left all the snow piled up in the handicapped access, leaving no clear egress to the sidewalk.
Some mornings you wake up with a full pack of matches but some rat bastard has ripped off the striker. You’re not going anywhere today. This is what we call a flare up. The disease has your body in a vice and you probably couldn’t strike a match if you tried. There are many reasons for a flare. It could be a sudden shift in the barometric pressure; that late-night freak snowstorm the weatherman forgot to mention. It could be stress. Your boss has warned you that project must be on her desk by end of day yesterday. Or it might just be that deep-fried pizza you ate all by yourself last night.
Then come the mornings where you wake up to the smell of sulfur. That last spark from last night’s last match has landed on today’s matches and incinerated them.
You’ve overdone it again. Held the match for too long. Let it burn down til your fingers blister. It’s your best friend’s wedding and by god you’ll burn every last match down to ash to be there for her. Or it’s that early morning phone call. Your father’s in the hospital again and you need to fly out today to get to him.
I break off there because the rest is rather salty.
I’ve grown so tired of spoons I’ve started eating my Lucky Charms with a fork. Hah! I about near wet my pants over that!
I break off there because the rest is rather salty.
I’ve grown so tired of spoons I’ve started eating my Lucky Charms with a fork. Hah! I about near wet my pants over that!
See I can get a lot of use out of a spoon. Most people can and do. That’s why the spoon analogy doesn’t work for me. I’ll use it to stir my coffee, eat my fruity pebbles and then grab out of the sink later to eat a whole tub of cookie dough. But a match? A match is a one-use item and it’s time is finite. Like my body and it’s go juice. That's it in a nutshell. A theory fleshed out with a few ways your matches get ruined before you can even use them. And the darned obstacles you find in your way, like snow being plowed up in the handicapped spaces. That's common in Fort Wayne. SIGH.
Like I said, I think this is enough to get the gist of it. And, maybe, understand why I was so thankful that Celia sent it to me.
In the sending, I hear her say: I see you, Myrtle. I hear you.
1 comment:
The spoon theory does sound silly. My first thought was what do spoons have to do with it. But the matches. MUCH better analogy. Better to understand.
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