Living with a disability or chronic illness is not an easy thing.

Last week I stepped on a an unpopped kernel of corn.

Then I screamed.

I would call this acute pain, though as the old joke goes, there is nothing cute about it.  It's the kind of sharp, stabbing, searing knife-strike that makes you curse, pick up the offending nodule, deposit it with great care in the mortar, and grind it miniscule bits while muttering

"you little stinker, I'm pulverizing you to bits you little snot!"

This short story tells it all:

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com

But you don't look sick??

In one of the forums I participate in, there is a recent thread about favourite paintings.  The first that came to mind when considering it was an impressionistic watercolour by Charles Demuth , (hailed as a precionist painter).  I have the print of  "Trees and Barns - Bermuda" in my dining room. It brings back fond memories of Bermuda, which I visited several times.  In particular, I would happily return annually to see the "Crystal Caverns".  There are fascinating caves in Bermuda.

I did look into the possibility of purchasing another print by Charles Demuth, and there are some lovely landscapes.  His most famous work was The Figure 5 in Gold which does very little for me, though it is striking. 

I think his watercolour works are the best.

Originally published 7/4/05 on Blogspot

So, I have new living room furniture, which of course means I MUST

paint the walls,
and get a new scarlet rug,
and rearrange the art,
and maybe colour-block the art,
and get new end tables,
and lamps and stuff.
Maybe even some chachkas and thingies!

I was thrilled when the new love seats and chair arrived, but quite upset when I realized the current paint colours matched them just fine, thank you very much. Being female, I did not find this terribly helpful. Obviously I cannot appeal to my cadre of worker bees with a suitably helpless expression, saying "oh, this is horrid, look, nothing matches!~ Can you help me paint" So what to do?

Then it occurs to me that I have once again forgotten the fundamental difference between men and women. Women coordinate, and men procreate. Forgive me for being simplistic, and allow me to elaborate.

Basically, in my varied roamings of this Great World, I have come to realize that women over think just about everything, for example, we are never, and I mean never direct, so if you are a gentleman, please learn the language, we don't intend to change. It's an estrogen thing. We also ascribe convoluted motives to the simplest statements men make - for example, if a gent says:

"Do you mind if I change the channel"

He may *hear* - "no, by all means go ahead". What is more likely meant is: "Sure, go ahead; drive me bonkers with 3 second snippets of 30 stations while you assert your male dominance with your phallically symbolic remote control - and buddy, I ain't TOUCHING your remote control later!"

Which brings me back to my original conundrum. Today I will borrow a page from the "man's dictionary", and simply say, I want this room painted. I want it painted by Thursday please, and I'll provide the beer.

But I don't intend to change, and you can't make me !

7/4/05

Originally Published 7/22/05 on Blogspot

Vegas is fond of cheese, and I always have cheese in my kitchen. Cheddar of course, provolone, parmesan, mozzarella and a very nice sliced vegetable medley Havarti that is particularly fine on sandwiches.

Vegas is a Boxer with a particularly sweet disposition and a charming lack of loyalty to her owners when it comes to food. Just yesterday she tried to break into my house again and her reign of cute must end! I jest, I am openly thrilled that she follows me around and refuses to heed her owners' call when I am hiding cheese in my pockets. There are bylaws in our fair city that restrict her movements, confining her to her own property with fines if her owners don't respect the force field of invisibility that is erected around all properties. I don't disagree with this, on the contrary, it is necessary to protect the citizens. We also have two Rottweilers in the area who roam freely, one of whom attacked and killed a Bichon on an unsupervised evening romp. Let's compare the two situations: Vegas making a beeline for cheese, with her embarrassed owner attempting to lure her back, and a roaming attack dog wandering around an area where many children live with no owner in sight. Again, I support the city bylaws restricting the movement of pets. It's their method that leaves a sour taste in my mouth.

There are things that should be done - Sensible regulation, mandatory spaying and neutering for pets if they are not registered for breeding or show purposes, a ban on stores selling animals from unregistered breeders, more money to the animal control office for training, resources to protect animals from neglect and abuse, a program to spay or neuter feral cats, etc etc. Unfortunately none of these provisions is mentioned in the new bylaw.

The new bylaw restricts the movement of cats.

Well, Damn people, it's about time the city did something about these nasty little kitties, If they don't we'll all be ruined! We've had it with all the nuisances in the city, like those noisy birds chirping me awake in the morning or those infuriatingly furry cats that help control mice in the neighbourhood or those god awful goofy dogs! Sure! Confine all those cats to their houses and while you're at it, can you do something about the birds that keep pooping on my lawn? Yes, telling people that can't have more than 3 pets is great, we NEED more cats and dogs clogging up the shelters! Can't feed the ducks or swans anymore, and thank goodness they have prohibited certain animals unless they're owned for the "purpose of entertaining the public". Brilliant, you can't feed the ducks in the Public Gardens, but it's all right to make a bear pedal a tricycle for your profit! Makes sense. Obviously, these animals dream only of world domination! GEEZ People - take a chill pill, until they develop opposable thumbs, I think we are pretty safe.

7/22/05

Reynolds you mythic container of truth, come share a glass of Spanish sherry at my graveside and recount the four missing days.

I was first introduced to Poe's writing as a teenager, in school, where 40 odd pre teens were given the questionable task of reading and discussing The Tell-Tale Heart".  I have read his complete works, and I appreciate the thematic simplicity of his short stories, and his exquisite attention to detail and narrative in conjuring sepulchral images.  Who else could write the opening line

"Roderick Usher and his sister Madeline invite you as their visitor to enter their decrepit mansion near that lurid tarn..."

It's magic.

Poe started his literary career as a poet, and it is to his poetry that I find myself returning time and again.  From a practical point of view, his poems are generally short and very engaging.  His delicate turn of phrase never ceases to tickle my fancy.  For your enjoyment, I include here

A Dream Within A Dream

Take this kiss upon the brow!
And, in parting from you now,
Thus much let me avow-
You are not wrong, who deem
That my days have been a dream;
Yet if hope has flown away
In a night, or in a day,
In a vision, or in none,
Is it therefore the less gone?
All that we see or seem
Is but a dream within a dream.
I stand amid the roar
Of a surf-tormented shore,
And I hold within my hand
Grains of the golden sand-
How few! yet how they creep
Through my fingers to the deep,
While I weep- while I weep!
O God! can I not grasp
Them with a tighter clasp?
O God! can I not save
One from the pitiless wave?
Is all that we see or seem
But a dream within a dream?
Edgar Allan Poe

To add insult to injury (see previous post) the airline lost one of his bags.

So the Canadian Government is once again out of money, and unable to protect itself, it's coast, or it's soldiers.

Defense comes up with $5 million to fund fisheries patrol and navy programs

This isn't a new thing, but it helps to underscore the absolute disgust I felt today when taking Whatsisname to the airport.  He is off to the coldest reaches of the Canadian North to assist the Canadian Army in preparing armoured vehicles, so that they will be less liable to kill our good soldiers.  They are Canadian vehicles, what can I say - they're crap for the most part.

To this end, he was issued 2 large duffel bags of kit and a rigging.  We put our fingers together, and this totted up to 3 bags.  Oh, big no no.  Air Canada only permits a soul to check two bags.  In an attempt to forestall any difficulties at the airport, whatsisname requested that his superiors check to see if the rigging kit was really needed, and asked them to do their best to get him permission to take a third bag, as it would be nice to bring along a few personal things, such as a shaving kit, jeans, a book to read, you know how it is when you're away for a month or more, it's nice to have some luggage.  Had this been possible, he would have been able to check the two issued duffel bags of kit which he is required to have, and a personal bag to take care of all those annoying things he needs to have like underwear.

Alas, the Canadian military in all their wisdom, would not authourize an excess bag, and upon arrival at the airport this morning, I can see why.

I am $120 out of pocket for excess baggage charges.  I spoke with a gentleman claiming to be the Manager for Ground Operations at Air Canada while there, who said he doesn't have the authourity to waive an excess baggage charge.  Interesting, I'll be following this up.  Worse than this of course, is the military shafting it's members for attempting to do their job.

I'm so mad I could just spit.