(no subject)

[vaxjedi]

Spoon Theory - more serious than it sounds at first.


I might not have Lupus or any sort of debilitating disease myself. Maybe I am missing the point a little bit. But this sure sounds like my life as well.

Comments

[xiombarg.livejournal.com]

Hmmm, I think you forgot the actual link.

[aiglet.livejournal.com]

The article is here (http://www.butyoudontlooksick.com/spoons.htm).

vaxjedi, maybe you should consider that not all "sicknesses" are physical...

[xiombarg.livejournal.com]

Exactly.

I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness.

The tiredness she describes can be depression as easily as lupus.

[hopeevey.livejournal.com]

Realistically, everyone has only finite spoons. Most folks have plenty of spoons for the cups of tea they're likely to want to stir. Because of your personal and professional situation, you've got a heck of a lot more cups of tea, none of which can go without stirring.

>>hugs<<

I do hope the original author will forgive me extension of her beautiful metaphor.

[toilteanas.livejournal.com]

i quite agree!

[eleri.livejournal.com]

We're living in the Matrix ;)

[ryoganox.livejournal.com]

The world is broken into Spoon Benders and Spoon users? hehe

[virika.livejournal.com]

I don't have lupus, but my sister in law does, and has lived with it diagnosed for 11 years now.
We all have busy lives, we all run out of spoons a lot. But having seen someone honestly suffer daily with a dibilitating disease that no one can see, i can't imagine how it must feel to know that at the end of the day you will ALWAYS be exhausted.
you may be tired, but your bones and muscles arent in constant pain. your hair doesnt fall out in clumps at random times for no reason. typing on the computer doesnt cause your wrists to bruise, stubbing your toe doesnt turn your entire foot into a swollen black and blue painful mass.
i am not saying you dont run out of "spoons" a lot. i like how Hope put it, we all have a lot of spoons, and a lot of stirring. tho having lupus is much like having 12 cups to stir and only 5 spoons to stir with. eventually, you stop trying to do it all and just keep 5 or 6 going because it is all you can do.

[vaxjedi]

I understand that. It was never my intention to give the impression of trivializing anyone with Lupus, or any other debilitiating illness.

No, I cannot fully understand the plight of someone who suffers from Lupus. And I understand that.

However, the metaphor, to lesser degree, did seem to ring true with my life as well. As someone who has worked with special needs kids, I think you understand how rough raising such a child can be on even the strongest of individuals.

[virika.livejournal.com]

i didnt mean in any way that your life ISN'T like that. I have worked with special needs children enough to have seen that look of tired desperation on a parents face when the everyday simple life has taken too much from them. I think more what she is trying to show is that she will NEVER have a day to not take it all into account. Even with children (moreso when she gets older, rather then now) a short weekend reprive is possible. You can't take a weekend off from an illness like that.

[eleri.livejournal.com]

I watched my mother in law die of lupus. I know full well what it does.

Who are you to judge that we aren't suffering "enough" pain, physical and mental? Is watching your child jabbed with needles suffering enough? Is being physically asaulted on a daily basis enough? What about the agony of not knowing how each year, each month, each day is going to unfold? Is our supporting someone suffering from a disease for the rest of their life enough? Do we get enough cups to be 'really' suffering then?

The person telling the story could have had any disease, any issue. The point was the *symbolism*, not "my disease is worse than your disease". As someone who works with special needs kids, you should have groked that, not played the "you don't look sick" card.

[virika.livejournal.com]

i never *said* that there is an "enough pain" I said there was a *different* pain. I have worked with special needs kids enough to know what a toll it can be on parents, even the strongest, most prepared.
i wasnt trying to trivialize your plight, i was only trying NOT to trivialize the point of the essay.

[eleri.livejournal.com]

i wasnt trying to trivialize your plight, i was only trying NOT to trivialize the point of the essay.

Then why did you focus on the woman having lupus? The point of the essay wasn't "I have a lupus, and it sucks" it was "people with disabilities and diseases have fewer resources than the average person". They whole point of what the woman was saying was that it's difficult on a day-to-day basis, and it always will be. By focusing the point on the illness, and not the message, you did trivialize what Blade and I go through.

Yes, we occasionaly get a weekend off. That in no way means a complete break. It's more like having a 'good day' where we can spend spoons on things like cleaning, or sleeping, that don't get spent on anything but Mousie on bad days. It doesn't suddenly give us more spoons, or fewer cups.

[xiombarg.livejournal.com]

Um, guys, I don't think you actually disagree. This isn't about what pain is "bigger" but giving due respect to two different problems, both of which are very hard, but hard in a different way.

[shangchi.livejournal.com]

I have a friend named Rick who is a quadrapalegic. He can't talk, can't move by himself, can't feed himself, can't dress himself, can't wipe his own ass. His head is the only part of his body he can move.

He's been this way since birth.

For a long time, before computers became advanced enough, he would talk using a board with letters and words (that he designed himself), and a pointer attached to his forehead using a welder's helmet suspension band. I became quite good at talking with him by anticipating what he was trying to say using his board, and by interpreting his grunts.

If we wanted to go see a movie, I would have to feed him popcorn, and wipe his mouth when he drooled. If he had to go to the bathroom, I would have to assist him in his bodily functions.

He now has a computer mounted to his wheelchair that speaks for him. He still uses the pointer attached to his forehead since he has no other way to trigger the keys on his computerized "board".

In this way, using computers, each word painstakingly typed one letter at a time, he has written several books. He corresponds regularly with people in prisons, and he gives prepaired lectures using his portable talking computer. He has traveled to Russia, China and other parts of the world.

He also does paintings describing his beliefs and faith using that same pointer device attached to his forehead.

He's one of the most emotionally stable persons I've ever met. I've even found myself dumping my problems on him and listening to his advice and encouragement.

There's a lot more I could say about this man. Whenever friends of mine would feel depressed or sorry for themselves, I would take them to visit Rick, just so they could see how good they have it. It's amazing how we forget how lucky we are to be able to feed our own faces and wipe our own asses.

All this is to say one thing: That, ultimately, how easy or difficult our lives are is entirely dependent on our attitude; whether we will allow our external circumstances to determine the nature and quality of our lives, or whether we will determine who and what we are internally.

I'm not saying that I have the kind of strength to be the kind of man Rick is. I think if I fould myself in his condition, it would probably kill me, but I'd like to think I would remember him and the things he has accomplished without the use of his hands, and I would try my best to continue living a productive life. Meeting him has caused me to try my best anyway. I'm not sure I can measure up to him, even with the full use of my limbs and the ability to speak.

It's people like Rick that remind me that, ultimately, there are no spoons.

[vaxjedi]

I doubt I'd have that sort of strength either.

It is good to now that there are people that have that sort of strength. It renews my faith in the universe.

[griffen.livejournal.com]

*hugs* Thank you for pointing at that.

And remember that mental illness can be just as difficult to deal with, and depression is a mental illness.

*hugs again*