Moral cripples and the utter bloody uselessness of comfort

Someone ought to do something. Someone ought to make a law. Someone ought to stand up for truth. Someone ought to defend the weak. Someone ought to stand up for what they believe.

Sadly, the world appears to be peopled by nobodies. Because when you ask someone who you thought was a somebody, what they are going to do, they generally mumble and excuse themselves into being a nobody.

It leaves the heavy lifting for a very few. But there's an ironic twist, the same people who so cheerfully never take a moral stand for anything, never stick they're necks out, never bear their own discomfort for 5 minutes to leave things they claim to believe it- these same people then resent and criticize the .05% that does it all. It would be funny if they could just shut their yammering gobs and let people enjoy the irony.

Does anyone consider how expensive comfort is? If what it costs is what you believe in and who you could be, isn't that just too much? Here's a hint- there isn't a super human race who never feel scared, never feel embarrassed or alone, and always know just what to do. The people who stand up for things whether it is a friends reputation or morals in a declining society do it with churning stomachs and quivering knees. They aren't comfortable. They are morally consistent.

It costs a lot to be the somebody who does what ought to be done. But not nearly as much as it costs to be the nobody who did nothing at all.

That sucks, let's party

Today was not a good day. I blame it largely on the sudden disappearance of all oxygen on the planet. The white knuckle pain from cycling off steroids hasn't helped. And the Xolair fatigue was finishing me off. So I have spent the day curled up on the couch holding very still except for when I got up to give myself shots. Very glamorous. And I am negotiating with Doc to go back on steroids. Today was bad enough that I wanted to be, right this very minute, being annoyed by doctors in Denver. Poor me. Poor breathless sad little me.

Then it was time to do chores. The word "chore" brings to mind slopped pigs and mucked stables. At our house it means that I hold out hope that we get the dishes off the table before the next meal and I want toilet paper in the bathroom. I had bought the soundtrack to Wicked and had put it on as Coray walked through the room carrying food from the dining table to the kitchen. Suddenly, she rose up her hard won turnout kicked in some lovely swirl.

The fire spread. Coray leapt past Juli carrying plates. Juli spun past Sam. Jimmy hopped from foot to foot. Amy Grace turned in precise little circles. And Sophie spun holding onto my finger until she staggered off.

Coray spun and lept through our narrow living room, her effortless ringlets sailing, blue eyes twinkling. She raised her lovely leg and leaned into a artful twist of pajama and curls. I don't think I have ever seen a ballerina do that step before. They all should. She spun fast and stopped and stretched out her leg in a finish that was half perfect grace and half an act of violence against the world. She danced with a ferocity and confidence that put life on notice. She has worked hard, she owns the movement now. And anything in this world in reach of her perfectly pointed foot. Some nights ago she was worrying about the future. She worried about life and if she would be equal to it. Watched her leap and kick, it occurred to me that life ought to worry. Coray is coming. Spinning, strong and accidentally beautiful, she'll stand where she wants and dance when she pleases.

Juli wriggled by, her bent toes coveting Coray's pointe. But on the balls of her bare narrow feet she dances with celebration. It will seem a shame to tuck such happy toes in metal boxes and pink satin. She twists and spins with a body trained to be a ballerina and a heart meant for a leaping Irish dance. The music talks to her and she knows just what it means. She dances to answer. I see the girl I find so unexpected. She is so feminine and giggly, my Barbie girl. But she is so strong. She has the bravest heart. The legs that twist a funky ballet in my living room, hike ten miles, track bears, and never slow. She is an explosion, light racing across my horizon. She dances because the music tells her to and no one could convince her she couldn't.

My living room erupted into a showstopping number befitting any 1950's musical. Sam found his place tucked neatly behind his charming smile. Spinning cards and charming his mother, he was the appealing rascal amidst the girls. His eyes sparkled as he slid the deck of cards in a easy row and called for someone to pick a card. He doesn't know a single card trick. He smiles and that is immaterial. He is the card trick, his own winning surprise. Amy is his lovely assistant. Her moves neat and certain, her face so lovely. She is all show. Serious in her playfulness. She is an actress. She will dance if it is part of the act. But her green eyes are sure that she is the show.

Sophie and Jimmy join in, stealing cards and spinning dangerously close to swinging feet. Jimmy comes and takes my hand. He leads me to the floor and then we begin dancing. Him mostly. But he makes is irresistible. He hops from foot to foot with perfect rhythm and then he and Sophie are spinning away. Sophie spins and hugs, overcome with excitement and affection. She dances and hugs, her fairytale perfect face shining. Jimmy moves on to feats of strength, climbing higher and higher. Sophie steps in neat imitation of her sisters still spinning through the living room.

And it occurs to me, that I was far to sick tonight for anything but a party. It occurs to me, that when you love someone, they can dance for you when you can't. I danced for joy tonight, I hope they let me do it again.

All fall down

I am not sure why I abandoned lying as a strategy for interacting with my doctor. It's just like me to abandon something that works. I sat there and said what this like for me, he looked at my PFT's, my meds, and my history and said "yamsbladder".

Okay. That's not a quote. But that made about as much sense to me as what he did say.

I like to be prepared so I am what is known as a negative thinker. I know 800 ways that any given situation can go wrong. Sure, there are thousands of books and self help tv personalities with whiter than white teeth that say this is not an effective strategy. They're wrong. If I think of what can go wrong, I think of what I will do. I go in to the problem with a plan. I go in knowing that I can do it no matter which scenario plays out.

Except for when some joker yells "yamsbladder" in the middle of my carefully constructed scenario.

I thought the Doc and I would discuss and deliberate, sadly up my prednisone, maybe look at the sleeping issue. Instead he said that he has hitched all his horses to this cart and it is still barely going uphill. He wants me to be admitted to National Jewish Hospital in Denver for one to two weeks. Yamsbladder.

What? That wasn't even in my list of Horrible Things That Might Possibly Occur. How am I supposed to figure out what to do now? Wing it? And how in the name of thunder have I managed in 10 months to flunk out of respiration 101 so badly that I am being sent to the worlds most prominent short bus for bad breathers? National Jewish Hospital is the most prominent Asthma specialty facility in the world.

It's a very good hospital. For very sick people. It is stunning to think that is me. It is stunning to think that is me enough that I can get in on a priority admittance. It is stunning to think that people seriously think I am going to spend oceans of money to be annoyed by doctors in Denver. I hate Denver. I was there once for about 17 hours and that city and I developed a lasting hatred that precludes my seeking life saving medical attention in that town. Also I think high altitudes make me look fat. I may be wandering into to hysterical denial here.

But it's not my fault. I had a plan for everything except yamsbladder.

Courage

I am not a brave person. I have done some things that appear, on the face of them, to be acts of courage. But I was not brave. I did them with great fear and anger and resented every minute. Apparently, I am not just a coward, I'm pretty petty too.

Today, I have to go see my Doc. I don't want to. I have to get my shot. I have to have a discussion that I have no interest in having. I have to face the little annoyances of discussing miracles and their possible Eta's. I have to find a way to keep my life working while I shake and sleep for three days straight from the shot. And I have to face the nagging suspicion that none of this is going to make me any better or give me my life back.

I hate shots. I give myself epi-shots fairly often but that doesn't seem to have reduced my fear. The Xolair is worse. It is as thick as gel toothpaste and the tube is bigger than my thumb. So it takes the nurse pushing with both hands to push the serum into my arm and they have to go very slowly. And then, as near as I can tell, it isn't working. The only effects I have identified so far are the three day coma that follows the shot and the enormous bills. I hate the whole stupid thing.

I have to talk to my doctor. I don't want to. I have to tell him that his best efforts have not given me my life back. I have to say that I am tired. I have to tell him that I am scared. I have to tell him that if nebbing is so wonderful, he can do it and have the inside of his head stink and his teeth fall out but as for me and my house, I'm having a hard time seeing the benefit. We are a ways into this now and all the miracles on the horizon keep vanishing like mirages when we come up close. Even the theophylline isn't working now. I have to say how it feels to fight for breath for 3 hours and wonder if it is ok not to fight for it.

I like to ignore things. There is a suck to avoidance ratio that makes life easier. I want to look away and let it go.

But I am not going to.

Yesterday my husband called and said he wanted me to know that he loves me. He likes who I am and likes having me with him. He knows I am self conscious about the side effects of the steroids but he doesn't see what I see. He thinks I am beautiful. And then he said that the most important thing to him was me being by him. So I am going to take my shot and find out if I am on steroids permanently and argue about nebbing and cry about my lost life. He loves me. I have to try.

It made me wonder how often we see someone who is doing something that looks brave to us and misunderstand. We think we are seeing courage but what we are seeing is love. I am not brave. I have no fight left. I am tired and sad and everything hurts. I cannot believe that someone my age can feel so old. I cannot believe that my life is completely consumed by this stupid stupid illness. I don't want this battle. I don't want to work this hard to breathe. But there are people I love. And there are people who love me. That is enough.

I think I will look a little closer now, when I hear great tales of courage. I will listen and I will think, "Who did you love so much, that your love was bigger than the impossible thing?"

Household Organization

I love the subject of household management. I find it fascinating. I could talk about it for hours. I have books and little notes and even a planner. I go over them every now and then, like an archaeologist examining treasured relics to determine the nature of a culture. I read and re read. I shuffle and discuss.

Because I have no idea what it all means. Group like things together? Seriously? If I thought in groups of like things, work with me here, they would already be together. Yeah. it's like writing a map to a different country in a language that I don't speak. You know where I put things? Down. Just touch things once? No problem. I'll put it down. It will be lost. I will never touch it again. Can I count that as a success? But I keep assembling those darn tools just like the idiot tourist who just keeps talking louder and louder as if volume was the universal translator. Power through.

But the idea that befuddles me the most is "do a little bit every day". How is that going to help? You know how much I can see of my bedroom floor? A little bit. I don't think 5 minutes a day is going to get it done unless I set 2024 as the ETA for this project. And I have a really short attention span.

I have an alternate plan I put into use whenever I get too crazed. It's called "Wildly Over-react". The basic theory is that if doing a little bit of planned action every day is good, doing a whole bunch of random crap all at once in the most chaotic way possible is better. There's probably a mathematical formula that expresses it. I'm pretty sure it involves fractions.

So that is how I found myself barricaded out of my bedroom. Because if you haven't cleaned up anything for months, the most rational course of action is to assign a child to each room and have them get everything out of that room that doesn't belong. That's why I buy hefty sacks in bulk. As I sat there, barred from my bedroom by the hefty bag moat, I made the same deal with myself that I always make. "We will never do this again." The problem with making deals with myself is that one of me is saying "Now promise that we shall never ever do this again." But the other part of me is saying "Yes yes, I couldn't agree more, we should have something chocolatey right about now." And it's always that second one that decides that the whole house has to be clean right now and the best way to do that is assign a kid to each room and hand out the hefty sacks.

I hate her and I'm beginning to think she's the reason we're fat and it isn't really just a food allergy like she says.

One week later I have mostly removed the evidence of my latest folly. I only slept on the couch one night. So am I doing a little every day? Are you kidding? I am exhausted and I have to conserve my energy for the next time I am beguiled by a fresh roll of trash bags.

Stupid things I love unreasonably much

Last week, we narrowly avoided a tragedy. Jimmy, age 2, spilled a cup of water on Bob. I was at the dentist when it happened. At least I have that comfort. Bob was injured in my absence. It was not I who failed to protect him. Coray fully grasped the enormity of situation. As I pulled into the driveway, stiff-faced and jaw-throbbing, she ran out to meet me. "Oh mom, it's Bob. I didn't know what to do. Jimmy dumped water on him and he wont stop running so I turned him upside down and put him on my bed. I don't think he's OK."

I should mention that Bob is a vacuum. A little round robot vacuum.

I ran to her room where Bob was in fact, upside down on her bed, wheels spinning furiously. I picked him up. I turned him over. I pushed the power button. Nothing. The wheels kept turning. Coray rolled her eyes, "yeah, we did try that." I tried more buttons. Then I tried combinations of buttons. And the wheels kept spinning.

I felt panicked. Well and truly panicked. It was unbearable. I finally took the battery out and set my dead little robot down on the kitchen counter. He was so still. I'd like to say that I loyally grieved for him. But I didn't. I left his sick bed immediately and ran to the computer to price replacements.

It's not that I don't have other vacuums. I have owned and even occasionally used other vacuums. I'm pretty sure I even know where another one is.

But Bob isn't just a vacuum. He was a deal I made with myself. He was the day that I understood that I could want to be a good mom and clean the floor and still want to read Maupassant instead. He was the day I accepted that maybe I should quit shooting for "perfect" and "should" and content myself with reasonable approximations.

As a victorious side note, I will point out that I didn't yell at anyone. Not the alleged babysitter, not the traitorous child who broke the no-open-cups-for-the-baby-rule, not the baby who was giggling over Bob's demise with twinklier eyes than I would have liked. I find that letting go of my shoulds makes me far less yellish as Juliana would say.

I sat on the couch later that evening, considering a Bob-less future and analyzing my budget for a Bob sized surplus. I considered life without him. I contemplated the return of guilt, the memory of inadequacy. And I began to wonder how many other ways I could make peace with all the women I am and want to be if I would just keep looking.

Bob's circuits dried out. After three false starts that confirmed our worst fears, he finally dried out enough to forgive our carelessness. He beeped three times and then came to life, whizzing emphatically around the kitchen that had gone uncleaned the night before (I said I think I know where another vacuum is not that I was sure). I watched him lovingly as he zipped with all the purposeful energy that I have never felt while cleaning. Then, I sat down to read, content to know that my bargain with sloth was in full force and all was right with the world.

Admitting defeat

I made this blog a while ago. I picked the template and the colors. I picked a font. I even figured out how to put a picture on it. Sadly, for me that is pretty cutting edge. There sat my blog, formed and ready for some brilliant piece of insight. And since then, I have been composing brilliant essays in my mind, poignant and thoughtful. I have worked hard to come up with the perfect piece of prose to begin my blog with.

I still have squat. Nada. How can I have so much in my life and so little to say? I have decided that I am intimidated by my own intention to make something great. So I now intend just to make something.

This is my blog. It will be trite and misspelled. I will most likely get very bitter about dissenting opinions. I fully plan to contradict myself. Also, I lie about how I feel sometimes. I start sentences with "and" a lot. I am not great at imagining my ideal reader no matter how many times I read Stephen King's "On Writing".

So there you have it. My blog. Like most things that happened to you today it will be disappointing and dull. I have full confidence in your ability to adapt.