Saturday, August 9, 2008

Sick Chicks and The Spoon Theory

I've been updating this thing far too often in the past couple of days. But one more for the road, because there are so many people who have no comprehension of what it's like to have a chronic health issue. I've lost friends over it, as they've taken personally my inability to be the social butterfly I once was. I do better these days, since we've sorted a few of the kinks out, but some of my issues have been with me since birth, and to be in my life means you have to know that my limitations aren't something you should ever take personally.

It's hard to believe that it was only five or six years ago that I could be out dancing every night, get home as the sun came up, go to work on no sleep, and still function. I often joke that I used up everything I had in my early-to-mid-20s. That's not to say I don't still manage, of course - I have a hell of a lot of fun when I set my mind to it - but it's less frequent, and more...thought out...than it used to be, by necessity. It's true for all of us, I'm sure; nobody's the same at 30 as they are at 20. But for me, and for some of my friends (you know who you are), it's more than that. Our bodies start howling at us to slow down, and my god, the price we pay if we don't listen...?

This is where I shut up and turn to blog entries such as "Is it worth the risk?", and websites like ButYouDon'tLookSick.Com, which features the amazingly evocative and now infamous (well, in my circles, anyway) "Spoon Theory" essay. They say it better than I ever could.

Normally I'd just link to this (as I did to the Feministe entry, which is well worth a look - it's all about why nobody should ever assume they know the solution to a friend's health problems), but because it's now only available as a PDF, I'm pasting the whole essay here. Please read it. If not for me, then for someone else you may know who "doesn't look sick".

THE SPOON THEORY (copyright 2003 C. Miserandino)
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 affected, 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 yourself 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.”

It's 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".

This goes out to my own personal support group - you know who you are, LJers* ; how lucky are we to have each other, 24/7, no matter what else is going on in our lives? - and to my family and closest friends, who never begrudge me an extra hour (or three) off my feet, and who never presume to know exactly how I feel, and who love me all the same. I love you all twice as much for it.

*(Meli, Casey, Lucy, Shannon, Jenn, Joolie, Jessica, Seph, Carla, Jan, Matthew, Kim, Rachel, Polly, April, Alicia, Jillian, Vashti, Jess, Emily, Josie, David, Katie, Jason, JJ, Bri, Tiffany, Maggie, Aurora, Tierney, Crystal, Stephen, Beki, Sam, Mina, Linda, Cassie... I beg forgiveness if I missed any of my LJ Inner Sanctum. It's just the fog setting in. xoxo)

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Friday, August 8, 2008

August MUXTAPE time!

Yeah, so, I finally got around to doing my August Muxtape. The usual rules apply - ask and ye shall receive. Click on the tape to see what's new...

[ Ehch's Muxtape - AUGUST 2008 ]

...and here's what was taken down to make room for it:

JULY 2008's MUXTAPE Tracklist:

  • Coldplay - Strawberry Swing
  • Wide Mouth Mason - Superstition (live/Stevie Wonder medley)
  • Robbie Robertson - Somewhere Down The Crazy River
  • The Ting Tings - Shut Up And Let Me Go
  • Keane - Is It Any Wonder?
  • Spice Girls - Holler
  • Nine Inch Nails - Kinda I Want To
  • Nelly Furtado - All Good Things Come To An End
  • Chemical Brothers (f. Justin Timberlake) - Do It Again
  • Imogen Heap - Speeding Cars
  • INXS - Elegantly Wasted
  • Massive Attack - Dissolved Girl

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The NIN concert - set list and stuff

This one's for you, Kristi. ;) Anyone who reads my LJ has already seen this, but I've had a few curious fans who didn't get to catch this leg of the tour asking me if it was a good show. I'd wanted to wait until I had photos (somehow) that would do justice to the extraordinary stage setup and completely mindblowing lighting effects, but so far, no luck. You are, therefore, just getting a copy of what I posted in my other blog. (At least it has a set list! And amusing pictures and video 'n' stuff!)

Trent Reznor gets me HAWT

Broken bones or not, I felt no pain in the presence of my rock god. Special thanks to Dimitri and HW for being entertaining concert-going buddies!

Where to begin??

Admittedly, I was a little worried at the start of the show. For some inexplicable reason, Trent opted to start with three songs off "The Slip", their newest album, with which very little of the audience is yet familiar. Myself included. I only knew the words to one of them (Discipline - you can download the MP3 for free at that link). But beyond that, my criticisms are few. The show ROCKED.

There were a handful of tracks that were taken from the GHOSTS I-V album(s), so I couldn't tell you which ones they were (it's all instrumental, and none of the 37 tracks have lyrics or titles - they're all just numbers), but aside from those, I'll see what I can do to recreate the set list (though I can't guarantee it'll be in order!).

  • 1,000,000
  • Echoplex
  • Discipline
  • March Of The Pigs
  • Letting You
  • Gave Up
  • The Good Soldier
  • The Frail
  • Closer
  • Terrible Lie
  • Vessel (ungh!!!)
  • Only
  • Piggy
  • 9 Ghosts I
  • 14 Ghosts II (?)
  • ? from Ghosts
  • The Greater Good
  • Pinion
  • The Big Comedown
  • The Warning
  • Wish
  • God Given
  • The Hand That Feeds
  • Survivalism
  • Hurt
  • In This Twilight

Did I miss anything, guys?

I truly hope that HW's cell phone pictures turn out enough to even BEGIN to illustrate the JAW-DROPPING set they had for this show. No two songs took place in the same formation. There were things being done with the lights and the instruments that I could never have imagined - it was absolutely ASTONISHING. I've never seen anything so sophisticated and just downright bloody COOL.

And oh, Trent, you looked so good. You have hair again, and you're in amazing shape but you're not all buffed up anymore. Delicious.

I'm sure the secondhand pot billowing up from the guys in front of us didn't hurt the amazement I experienced at just about everything, but really, I'd have been throughly impressed no matter what. They incorporated the strangest things into the music: a giant (and I do mean GIANT) xylophone, an electric cello, countless weird percussive and piano-like things, an enormous touch-sensitive curtain that seemed to be somehow connected to the electronic bassline... Seriously, it was just...beyond.

The last NIN show I saw, back in the summer of '06, was still superior. But this was one hell of a show. There were parts that were positively electric. Palpable. Dripping with sex.

I'd break the rest of the bones in my feet to have stayed another hour. Maybe next time. In the meantime...

P.S. Yes, the August MUXTAPE is coming soon. I KNOW I'M LATE AGAIN.

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