Adderall is my friend, I think

I've always thought I was the least likely person to have ADD. After all, I was as far from hyperactive as you can get, and I love to read, and I made it through school with good grades. Sure I drifted aimlessly from day to day and had no idea what to do with myself if I wasn't at work or school. Empty time sure was empty. When I was a kid I hated summer for this reason. I would draw up elaborate schedules, but I could never keep it up. I loved school--so ordered, so rhythmic. It was such a relief to know that I was supposed to be in place B at time A. And schoolwork was easy, as long as I liked my classes, and I usually did. I was bored a lot, but mostly at home.

I don't think I ever owned a calendar, much less a planner. I have no idea how I got through college without missing assignments, exams, whatever. I don't remember having a date book until I was in my 30s and I started a job where they made you take a Franklin Covey seminar. I hate Franklin Covey. I hate his bulky planners and his goal charts and the stupid seminars. But I was sucked into the world of planners. I've carried a lot of them, and written in appointments. Unfortunately, I usually forget to look at them.

My coping mechanisms consisted mostly of letting someone else take care of the important stuff at home and never committing to anything that required a due date. And then along came kids, and suddenly there were doctors and dentists, and then specialists and day care providers and forms and charts and a mountain of bills, statements, applications, laundry, toys, diaper bags, commutes. Now, after seven years of motherhood, I am going to admit that I have lost it and probably never had it. I regularly misplace papers. I forget doctor appointments. Sometimes I show up at appointments on the wrong day. I can start on one project and somehow end up researching the name of that obscure actor in movie x. I've written checks off the wrong account. I can forget what you are saying while you are talking to me, because my mind snagged on one of your words and that reminded me that I have to remember to not forget to pick up the dry-cleaning. I write notes to myself on my hands in Sharpie. I forget to reorder prescriptions before I hit the last pill, at which point I notice that the label says "No More Refills." The flip side is that I can become so obsessed with a project that I don't notice the laundry or the dishes, or how very late it is getting. It seems perfectly reasonable that I can pack three lunches, clean the kitchen, load the dishwasher and finally fold the laundry at eleven pm. Even though I've never been a great homemaker, I've always managed to hold it together at work, but not now. I've always been great at ideas and lousy at follow-through, but now I feel like a gibbering idiot in a cubicle.

Our life only runs smoothly because of Dear Husband. He pays the bills and realizes that if we are going on a trip on the 11th, certain preparations need to start on the 5th. When I hedge, he is decisive. When I dawdle, he keeps me on track.

So, Adderall, let's see what you can do.

Bah

I've started this stupid post half a dozen times now. There's no flow.

Firecracker's surger is set for February 8 and that just sucks. February 9 is her birthday. How am I going to explain surgery to her? How am I going to handle watching her handle it? Sometimes I just want to kick God's shins.

And They're Off

That's how it feels as the seasons begins to speed out of the starting gate of Thanksgiving and careen out of control on its way to Christmas. I've been lying low, wondering what to do with myself. We still don't have a date for Firecracker's surgery. I seem to forget things left and right. There's a poem about losing things, but I can't remember who wrote it. I have an enormous fine at the library and I will soon have to slink in sheepishly and pay it off (actually, Dear Husband told me he took care of it, bless his heart). Today we went in search of colored lights on white wire. You would think that would be pretty easy to come by, since trees come in a rainbow of colors these days. Firecracker almost had a meltdown because it looked as if we would have to settle for clear lights on white, which according to her: "That not going to be beautiful." We finally found the blasted lights, at which point Firecracker pointed at a tree with CLEAR lights and said "I like that".

From now until Christmas work is a madhouse. I have to make cookies for two different events, purchase tea for another, and make it to both my girls' school parties and the volunteer project my office signed up for, which of course are on the same blessed day. Oh, and then there's Secret Santa presents to prepare, and my final surgery, which means hauling myself to the hospital for blood work, and then there are at least three other medical appointments and probably more if I were actually keeping up to speed.

And now if I can just fend off the impulse to try for a "perfect" Christmas. I remember the Christmases of my childhood as magical, which given my parents cannot possibly have been the case. Maybe I thought Santa was so great because he had nothing to do with my family and that gave me hope. But still I surround myself with magazines full of picture of perfectly decorated trees and tables, with attractive families trekking across the snowy fields with freshly gathered evergreen branches to put on the mantle. And there are always these suggestions for inventive ways to wrap presents. Good heavens. I was so excited that I can find gift bags and tissue paper at the dollar store that I thought surely we would no longer need to tie red raffia over hand-stamped brown paper, affixing a cookie cutter or wooden spoon, loofah, manicure set, small animal or other item to the package as a sort of lagniappe. Our presents have presents. It's presents all the way down.

I'm off to figure out how to keep the cats out of the tree, since the other day I walked in to find it lying forlornly on its side.

Report on the Conference

This past weekend we attended a regional conference on Tuberous Sclerosis. I have information overload. They did drawings for one-on-one meetings with various specialists, and we were able to snag meetings with Firecracker's surgeon-to-be and a geneticist. The genetics are too complicated to think about. Abby's genetics test came back negative for known mutations on the TS genes, but it seems that you can have the mutation in particular tissues (as opposed to the blood they test) and nowhere else, or there may be mutations they don't know about yet. So her labwork is going off to some research center to be mulled over.

They fed us well at the conference. That's more important than people think. We met many nice people, very few of whom had a child diagnosed so late. Some had children with severe autism and developmental disabilities. I met one person who found out she and her sister had it after their children were diagnosed. Dear Husband joked that he was going to Home Depot to buy a blacklight (to look for the characteristic depigmented spots on the skin). We're all very fair, so it's hard to see if we have hypopigmentation.

That's all for now. I'm tired and very sad about it all. DramaQueen is feeling insecure because Firecracker gets so much attention. I feel too tired to be nice to anyone. Someone at work ticked me off royally and I thought how annoying it is that people think I should give a damn.

On a postive note, the director once again passed along some PASTE cds, and he's promised to hand on a Sufjen Stevens CD. Finally I can find out what all the fuss is about.

Adventures in Brain Surgery

Today we met with the head of the epilepsy center at Scottish Rite to hear in person what he had already told us by phone—that he recommends that Firecracker have brain surgery to remove one of the tubers that seems to be the source of much of the seizure activity. He thinks the data show that she will greatly benefit from its removal.

I still can’t get my head around it. Here is a doctor talking in the most matter-of-fact (though friendly) way about opening up my kid’s head and taking something out. Actually, opening up her head TWICE. First to insert a sheet of electrodes to map the problem section and then to do the actual surgery. Poor Firecracker will be stuck in bed with wires coming out of her skull. For a week.

To top everything off, I nicked someone’s bumper in the parking lot. I’m beginning to wonder if I have my own personal demon rushing before me to prepare catastrophes and mishaps.

Well at least I have the season premier of Boston Legal to look forward to.

Nothing that Exciting to Report

I'm so thankful to everyone who has left messages. You guys are great.

I wish I had something coherent to say. Abby's teacher has reported that Abby seems to be having some absence seizures in the morning. She's now at the maximum dosage of Lamictal. Dear Husband has tried many times to get hold of the neurologist in charge of her case at the epilepsy clinic, and they have made the very bad mistake of not returning calls promptly. Never do that, because Dear Husband will tear you a new one. I wish I had some of his assertiveness. Anyway, he did finally find out that the team was discussing her case today. Not that we will know anything for some time still.

Thankfully, Firecracker is doing well at school. She reports to me every day the status of her tumultuous relationship with a boy named Eric. He alternates between being her friend and being not her friend. She also reports on the "mean girls," who have not yet been identified by her teacher (the classes mingle during recess).

DramaQueen and the girl next door made a cafe, complete with food, menus, trays, servingware and cutlery, all made from paper. She also has a fascination with lists. I've seen her happily occupied copying out names from the school year book, organized by grade. I have no idea why this delights her, but I've seen her bore her friends to death with it.

We're looking into buying a house. At the moment we are targeting a particular house that could just possibly be within our means and still keep us in our current school district. Most of the houses here start at 200k, so if this one doesn't work out, we will have to look into switching districts. Oddly enough, the really good school districts are in very expensive neighborhoods. Imagine.

Today we had the company picnic, with each agency representing a different era. We were the 70s. I went as Annie Hall, which I found much preferable to bell bottoms and disco clothing. We won a garish trophy (looked like someone's old golf trophy made over with hot glue and a lot of buttons, sequins and fringe, among other shiny objects).

Another high point--the coordinator gave me 5 or 6 sampler CDs from Paste Magazine. I benefit from his efforts to understand his son. Said son will be performing at The Earl on Halloween, and if I didn't have to do the trick or treat thing, it would be worth it to see our coordinator at a rock concert. But the CDs are lots of fun.

Perkier in Some Respects

On Friday last I had the second surgery in the reconstruction process. This was outpatient, so they booted me out the door before my head had stopped wobbling from the anesthetic. I don’t remember much about the rest of the day. I am now rather itchy, and I have to wear this very attractive heavy-duty surgical bra that practically goes up to my neck. This procedure was a walk in the park compared to the last one and I can see that by the time all is done I will look pretty decent. In fact, since they had to modify the left breast a bit to achieve a match, I’ve had a lift gratis. I can stave off the aging droop a bit longer.

Now that I’m through this hurdle, the full realization of Firecracker’s condition is creeping upon me. The very idea of brain surgery makes me feel queasy. And how on earth do we explain this to her without scaring her half to death? Particularly when I myself am pretty scared?

I’ve been wondering why I don’t feel much like shaking my fist at God, and I conclude that my idea of God is so flat and remote that it would be like shouting at a cardboard cutout or talking to a psychoanalyst:
Me: My kid has weird things growing in her brain and who knows where else and this is just one but probably the worst in a long list of catastrophes we’ve had to deal with in the last 8 years.
God: That’s very interesting. How do you feel about that?
Not exactly Abba, huh?

I’m also feeling terribly restless. Reading is how I usually soothe myself—it gives my mind somewhere to go. But I can’t stop in the middle of the work day and open a book. All my work is in aid of church planting. Does North America really need more churches? What should I be doing instead? Don’t know. Have never known. What do I want to do? Stay at home. I think. Maybe.

Caring Bridge

8/27 update:

Sorry to anyone who tried to click on the link--I put in an errant period. I've corrected this and tested it and it's now working. Thanks, everyone.

I've decided to out myself so that I can direct everyone to Firecracker's Caring Bridge site. We'll post updates about her and you can sign our guest book. Just go here: http://www.caringbridge.org/visit/abbyswartz.

I am also posting a new video. It has the same pictures, but it also tells you those who didn't survive, and it has the contact information for the TS Alliance.

Thank you to everyone who has left messages of encouragement. I know many of you are praying for us, and we are so grateful.

The Faces of TSC

I'm worn out and don't have much to say. There's no news, really. I have my second surgery on Friday, but it won't be nearly as difficult as the previous one. In October there is a Tuberous Sclerosis regional conference here in Atlanta, and we will go to that for a crash course. Here is a video called The Faces of TSC that we found on YouTube. It seems you can find anything there. There's even a message about TSC from Julianne Moore, but I think this one is more interesting.

The bad news and the, well, what is the good news?

Tuberous Sclerosis Complex is a genetic disorder that causes benign tumors to grow on vital organs. When they grow in the brain, as they are for Firecracker, they cause seizures. They can also grow on the kidneys, lungs and heart, and the skin is usually involved as wel. "Benign" is something of a misnomer, since they can disrupt organ function just by being there. The specialist is pretty certain that Firecracker has TSC. In fact, when he examined all the films again with a neuroradiologist, he found 4 lesions, not the 2 he originally told us about. Unless there is a compelling reason not to, she will have brain surgery to remove the lesions. And she will have to have her other organs scanned to make sure they are clear.

There's no cure for this stupid disease, and there's no way to predict its course. It can cause just a few problems or it can endanger your life. All the information I've read states that TSC patients live a normal life span, at least statistically, but just how disabled they might be during that lifespan is unknowable. Some children are autistic and some severely retarded. Firecracker is neither of those, but the lesions are causing seizures, learning delays, and behavior issues.

We're waiting for the results of a genetics test. That will take 2 months. Because it's a genetic mutation, any children Firecracker has could also have the disease.

Dear Husband thinks I'm in denial, that I'm not here, because I'm not constantly in tears. I think I feel more fear than sadness. A kind of cold, clawing fear that has settled into my stomach. It makes me tense and then tired, waiting to find out when, how, what next.

More Medical Mysteries

So, Firecracker spent last week in the hospital hooked up to an EEG and confined to the area of her bed covered by a video camera. We had to deprive her of sleep, drop her meds, and keep her off food and water between 8 am and 3 pm every day. She has had seizures since age one, and she had an MRI at that time that did not reveal anything. Her MRI this time, however, showed lesions. The goal with the hospital stay was not just to record her seizures but to catch her in one, shoot her full of dye, and wheel her in for a contrast MRI. She also had a CT scan and will have another MRI next Monday. Then the epilepsy team at the hospital will confer and decide what course of treatment we should pursue. It took the whole blessed week for them to catch her at the right time.

One of the concerns is that she may have something called Tuberous Sclerosa, which is a genetic disease that causes benign tumors to grow in the brain and other organs. This would be a very discouraging diagnosis, since there is no cure for Tuberous Sclerosa, and it’s impossible to predict what impact it will have. So, because she doesn’t have any skin markings associated with TSC, she will have a special test done to determine if she has the genetic markers. If it’s not TSC, it could be scar tissue from a brain bleed, or it could even be related to celiac disease (the doctor ordered labs to determine if she is gluten intolerant). Whatever it is, the lesions are placed in areas responsible for language, mood control and executive function, and that tells me there’s a long, difficult road ahead.

Needless to say, last week was just awful. Added to that, my MIL came into town to help and ended up alienating the nurses and doctors. She told the neuropsychologist that she didn’t believe in IQ tests while he was trying to evaluate Firecracker, and she generally tried the patience of everyone by being bossy and demanding. She came with the best intentions, to be helpful, but she is really not at her best when over-tired. She has a tendency to parent my children that I find really annoying. But I’m not very good at maintaining firm boundaries, as Dear Husband is always pointing out. She also seems to have fed Firecracker nothing but sugar during the entire hospital stay. I am now working on getting her to forget that glazed donuts exist. Ironically, MIL got uptight when I was going to let Firecracker have a second piece of sugarless gum (one of her parenting on my behalf moments). Gum – donuts. Call me crazy, but I prefer a stick of fake sweetness to a ring of lard coated in sugar. Well, actually, I adore donuts, but I don’t think I need to encourage that in my offspring.

Stopping by to chat

I’ve been too busy at work and too annoyed with my computer at home to blog. And I just got the new Harry Potter book, so you may not hear from me at all until that’s done.

Last weekend we went to Savannah. I grew up in Georgia, but I had never seen Savannah. I thought this needed to be rectified. Now I’ve decided that we should pack up and move there.

It’s so durn pretty, and there’s a beach that isn’t wall to wall hotels and beautiful renovated Victorian houses and the streets are laid out around squares. The old town is prettiest, of course. Like everywhere else the suburbs are bloated with new developments, Wal-Marts and B&Ns and such. But it was still a blast. I particularly enjoyed the beach, and I’m not a beach person. We were lucky to have mild weather and to get there before the crowds. Tybee Island is very low key and there are no high-rises—-just ramshackle little bungalows. I’m not a fan of the Atlantic, but I got past comparing it with the sugary sand and clear blue water of the Gulf.

That was one of the high points. The other is that Dear Husband’s immune system appears to have righted itself. The doctor thinks that once he started the gluten free diet, it took the stress off his T cells or whatever they are.

My doc put me on a bit of Prozac to drag me out of the pit. It is making me very very hungry. The kind of hungry that's right next door to nausea. Next week Firecracker goes into the hospital for a video EEG. We have to decrease her meds so that she’ll have lots of seizures for the doctors. I am not looking forward to that.

I recently looked at our budget and discovered that we spent $800 on medical expenses last month. Ouch.

Sheesh, I'm glad this week is over

Man, this was one crummy week. It was one of those weeks that is becoming all too familiar, one in which mistakes seem to attract other mistakes until there's a big fuzzy hairball of a mistake crowding me out of my cubicle. And I'm not the kind of person who takes these things in stride. No, I have to give myself a mental lashing several times a day and weep into my keyboard. I complained so much to my therapist that she asked if I could have ADD. How curious, I thought. So then I found myself at work and looking up ADD on the web when I should have been, well, working. More fuzz for the hairball.

Since I'm always ready to take on a new diagnosis--they're like virtual toys--I'm going to see the psychiatrist armed with a questionnaire that, if it doesn't indicate ADD, sure does indicate that I am a total flake.

Now, I always thought you had to be a hyperactive struggles-with-schoolwork kind of person to have ADD. Seems, though, you can just be a daydreamer who loses and forgets everything and is pathologically shy and gets bored all the time--they call it ADHD primarily inattentive, or something like that. If you're really smart and you like your classes you can keep looking good until the work gets too complex, which for me happened about the time I had to balance my own checkbook, which I did maybe three times before giving it up entirely. Over the years I've witnessed myself changing from pathologically shy to the kind of annoying person who interrupts you and can't stop talking. Meanwhile the academic prowess has unraveled itself into some fluffy yarn. I bet I would talk a lot in class now, if I could remember what time and place it meets. It's in my planner, but the planner has gone missing. I know it's here somewhere, if I could just get up the energy to look.

RevGals Friday Five: Talents and Gifts

1. Personality tests; love them or hate them?
Love them. Particularly Meyers-Briggs. I’m an INFP, and that is exactly to the T the way I act. It was validating to find out that there was a class of other like me.

2. Would you describe yourself as practical, creative, intellectual or a mixture?
I am a mix of creative and intellectual. But I’m not intellectual enough to want to be an academic and read long intricate books on philosophy and theory. I have a quick mind, but it gets impatient. That’s why I never managed to read Lacan or Derrida, or even Plato and Kant. Give me the basic concepts stripped of all the wordiness and I’ll run with it.

3. It is said that everyone has their 15 minutes of fame; have you had yours yet? If so what was it, if not dream away what would you like it to be?
I have never sought it and, happily, it has never come unbidden. Being the focus of attention makes me anxious, so I can’t imagine wanting even 15 minutes.

4. If you were given a 2 year sabbatical (oh the dream of it) to create something would it be music, literature, art.....something completely different...share your dream with us...
I would go to school and take classes in Victorian and Modern literature, art history, and poetry. Maybe some history from those time periods. And then I would write poetry. And I would take up sewing and knitting, so that ideas could percolate while I’m creating something else.

5. Describe a talent you would like to develop, but that seems completely beyond you.I would like to be organized. I try. And then it slips away from me. Consistency is extremely difficult. So instead I am overwhelmed by the enormity of the task of, say, going through the pile-up of mail and papers. And, yes, I’ve tried breaking it up into small goals (It will be forgotten entirely after a few sessions, because something will come up that has priority. That’s what happened to The Great Photo Sorting Project), setting timers, blah blah blah. I try to throw out junk the minute it comes in, but I’m always astonished at how much stuff that isn’t junk there is to be filed or dealt with. And, if it requires action, I can’t file it; when it’s filed it’s dead because I no longer see it. I even have a planner, which I frequently forget about, even though I lug the thing around with me all the time. Add to this that Dear Husband hates every idea I come up with for rectifying the situation, and I’m stymied.

I have this idea that if I were organized, I would be one of those Moms Who Do Lots of Things and Aren’t Slackers.

I’m not a minister, so I won’t do the bonus question.

How Clean Is Your Oven, Or Your Books?

This past weekend a friend of mine that I haven’t heard from in years sent me a package. In it was a letter wrapped around a box containing . . . an oven liner. Why, I wonder, did she want to give me an oven liner? I did put it into my oven, since it covered up all the spills. I was probably supposed to clean that up first, but why clean it if no one can see it? I feel the same way about making the bed. When my MIL was looking after the girls during my recovery, she had them make up their beds each morning. Needless to say that habit has been abandoned. I simply don’t care whether or not they make their beds. I’ve tried to care, in the name of Instilling Good Habits. I am probably contributing to their moral deterioration.

Speaking of moral corruption, I’m editing a manuscript about the author Robert Cormier. It’s part of a series for young adults on banned books. I’ve never read Comier, but the titles are familiar—I Am the Cheese, The Chocolate War. The manuscript gives some background on censorship in general and a list of court cases that have tried to remove various books from public and school libraries and school curricula. That sort of information just makes me want to kick something. I will never grasp the desire to dam the free flow of ideas.

What did/do people object to in Cormier? Well, he uses naughty words. Then some people object to The Chocolate War because it suggests that children can’t trust adults, and some object to I Am the Cheese because it suggests you can’t trust the government. Gee, let me hold my sides so I don’t split open. Here there is an ongoing attempt by a concerned mom to get the Harry Potter books off public library shelves. She’s welcome to keep them away from her own children, but I would like mine to be able to check them out of the library. On the other hand, no one is trying to remove Ann Coulter from the shelves. Go figure.

Still, I suppose I can relate to a desire to protect children from some of the baser ideas floating around--such as consumerism, greed, sexism, racism, recreational violence, blind patriotism and the like. I don’t think there’s a conspiracy afoot to induct my children into the dark arts. There is, however, a concerted effort to make them good consumers and compliant citizens.

The books that the world calls immoral are the books that show the world its own shame. - Oscar Wilde

A Day Late and Dollar Short--The Friday 5 on Summer

The RevGals Friday 5 was about Summer. This pesky nuisance called work got in my way yesterday, but here they are:

1. Favorite summer food(s) and beverage(s):
Watermelon, watermelon, watermelon. And the less superior melons: cantaloupe and honeydew. And cherries. For beverages I’m really a water person in hot weather.

2. Song that "says" summer to you. (Need not be about summer explicitly.)
Maybe Bennie and the Jets, because I used to hear that at the swimming pool when I was young.

3. A childhood summer memory
Going to Panama City Beach and feeling the water rush up and over my feet. When I saw the beaches on the Atlantic, I was sorely disappointed—the water looked so muddy and the sand wasn’t the beautiful white drifts of the Gulf. Otherwise, summer in south Georgia is irredeemably miserable, even more hot and humid than where I live now.

4. An adult summer memory
New York City. Heatwave. A group of us trying to get from 110th street to the West Village, where there was this wonderful café called Veniero’s. The airconditioning on the train had broken. It was crowded. That café was a beacon, promising iced coffee and the best cannoli I have ever had.

5. Describe a wonderful summer day you'd like to have in the near future. (weather, location, activities)
I hate summer. Period. Don’t like heat, don’t like a bright sun beating down on me, don’t like swimming. Hate cookouts and being sticky and bothered by insects. I’ve never been anywhere with a pleasant summer besides England. And I was there once during a heatwave and it was miserable, because they don’t always have air-conditioned buildings and when I bought a drink off a street vendor it was warm. Warm soda. The perfect summer day would be cool, and I would be in a city, so that I could visit museums and bookstores.


Optional: Does your place of worship do anything differently in the summer? (Fewer services, casual dress, etc.)
Everything is the same. Our church is pretty big and the number of those attending doesn’t seem to decrease in the summer. Dress is always casual. Sometimes I think you could show up in your pajamas and no one would think anything of it.

Despair, I don't like you very well

Despair,
I don't like you very well.
You don't suit my clothes or my cigarettes.
Why do you locate here
as large as a tank,
aiming at one half of a lifetime?
Couldn't you just go float into a tree
instead of locating here at my roots . . .
--Anne Sexton

This has been the month of mistakes. It began with a huge error in our newsletter. Yeah it happened while I was out of commission, but I had never sent off the changes before I left. Thought I had but I had not. Then there was the surprise of finding our website migrated before I was ready. Oops—no software to update it. I went to see my therapist only to realize I was there on the wrong day. I rescheduled an appointment with my psychiatrist only to miss it. Now I owe $99 for a missed appointment. Ouch.

I don’t know if I was on a downward slide and that’s why I’ve been walking around in confusion, or if a few mistakes threw me so off my stride that my reaction only resulted in more mistakes. I’ve never been an insomniac. In fact, I usually feel like I never get enough sleep. Lately it’s dawned on me that I may not be sleeping as soundly as I think. I often wake up with headaches. Sometimes I wake up feeling overheated. Sometimes I have bad dreams, according to Dear Husband. On top of this, Firecracker often wakes up scared during the night. In fact, lately she has wakened screaming at the exact same time to the minute for several nights: 3:02 am, the hour of deepest sleep and night terrors. I also can’t help but remember that stupid Amityville Horror story in which the husband woke up at 3:15 am to do scary whacky stuff. I think it’s also called the Devil’s Hour, which is kind of silly when you think about time zones. One person’s devil hour is another person’s lunch. But I'm highly suggestible and when I see it's 3 am I'm careful never to look in a mirror or other reflective surface, since I'm sure I'll see something I won't like.

Speaking of sleep, I try never to sleep on my back now. I used to have spells of sleep paralysis. Not very often, and the first few times I didn’t know what it was, but I gather that they are more common if you sleep on your back. If you’ve ever experienced this phenomenon you know it can be terrifying. I always felt pulled to the bed, as if a magnet held me there. I would hear buzzing, humming and scary, garbled whispering in my ears. I would finally snap out of it feeling frightened and uneasy. Once I was certain someone had broken into the house, even after I went through it room by room. The last time I experienced it I was certain there was an evil presence standing just beyond my left shoulder. I’ve read that people think sleep paralysis is behind tales of succubi and hags visiting in the night.

But the upshot of mental fog and not enough sleep is that I am depressed. Or maybe the mental fog and lack of sleep is the result of being depressed. Whatever. By now I should be used to living in an endless loop. I feel aimless and hemmed in. What, I wonder, am I supposed to be doing? Do I feel passionate about anything anymore? In college I was passionate about studying literature, from which I gathered the mistaken idea that I would really like a career in publishing. I used to be passionate about writing poetry. Until one day I woke up and found I couldn’t write anymore. Really. It turned off like a tap, and I finally gave up on all the Artist’s Way type methods for jump-starting it or writing through it. It was like knowing a language and waking up unable to speak, and then finally the language became remote and unfamiliar and awkward.

So I’ve drifted along riding whatever current I fell into, for lack of any better ideas. I know my mother felt much the same. She pondered what she was supposed to be doing until she died, which I guess was the most definitive answer she ever got.

RevGals Friday 5: Books

Dear Husband says I have too many books, but can that be possible?

1. Fiction what kind, detective novels, historical stuff, thrillers, romance????

These days my favorite books are young adult fantasy novels, like Inkspell and the Harry Potter and Artemis Fowle series. I also enjoy detective novels—Elizabeth George, P.D. James, Laurie King, Reginald Hill, and Ruth Rendell are among my favorite mystery writers.

2. When you get a really good book do you read it all in one chunk or savour it slowly?
Alas, I seem unable to savor but have to rush willy nilly through to the end.

3. Is there a book you keep returning to and why?

I have not had that sort of book for many years. When I was in my teens and twenties, I read Brideshead Revisited once a year. I loved the lyrical (some might say purple) prose and the romance of the story.

I do have favorite poets I will return to--Mary Oliver, Sylvia Plath, Charles Simic, Louise Gluck, Seamus Heaney, Anne Sexton, Emily Dickinson—but not necessarily any particular book.

4. Apart from the Bible which non-fiction book has influenced you the most?

I don’t read a lot of nonfiction, and there isn’t any one book that has affected me strongly. I think the books I’ve read most recently that have influenced my thinking have been on homeschooling. In particular, I’ve read a number of books on Charlotte Mason, including When Children Love to Learn: A Practical Application of Charlotte Mason’s Philosophy for Today. I have read a lot of books on homeschooling and I don’t remember all the titles, but they made me want to teach my kids. When that could happen, I don’t know. I also found Unconditional Parenting by Alfie Kohn thought-provoking, although I’d really like to have a chat with him about practical applications.

I love the books by Ann Lammott, Donald Miller, Philip Yancey, and Kathleen Norris. Each of these authors has enriched my understanding of faith.

5. Describe a perfect place to read. ( could be anywhere!!!)

I like reading curled up on my sofa. I don’t usually like to be outside, because here it’s too hot and bright and there are too many insects. I hate being hot and I hate being in the sun. Sometimes I’ll sneak read in the parking lot of the daycare center just before I pick up my kids. Bad mom.

Oo la la

(Disclaimer: I do in fact like a lot of French films--see previous post.)

While I’m talking about movies, last night I saw a French film called Sex is Comedy . It’s about a director who’s having trouble with the love scenes in her film because the actors don’t like each other. I thought the dialog was very French, meaning wordy, complicated, and show-offy, like Derrida. The meaning had vacated the words and lodged on the highest most inaccessible shelf of discourse. This kind of dialog drives me nuts

The film does have some amusing aspects, if you find men running around playfully showing off their privates funny. I did come away with a burning question—is there really someone in charge of creating and taking care of fake penises for male actors?

I don’t know what the film intended. I wouldn’t call it comedy. I’m sure someone could say something intelligent about exploring the boundaries of sexuality and so forth, and then there’s the movie within a movie angle, which IMHO seems a bit tired. The director (I mean the director within the film) speaks of the importance of loss of virginity and women expressing desire. Did I mention that the director talks a lot? The actress (I mean the one in the film within the film) is inexpressive through most of the film, until it culminates in the finale--a sex scene in which it isn’t clear to me if the girl is acting enjoyment, hysteria or what, but she is at last, ah, very expressive. Following this the girl bawls her eyes out while the director comforts her. From the great hush that follows, I suppose Something Monumental has occurred, but I don’t know what, except that the director finally manipulated everyone into doing exactly what she wanted. The soundstage crew look stunned and thoughtful. Now, what could they be thinking about?

I thought I recognized the real-life director’s name, Catherine Breillat. I heard about her from a review of the film Anatomy of Hell that featured Rocco Siffredi, who has a long and illustrious career in adult film. This would be the place to say something intelligent about the boundaries between erotica and pornography and perceptions of obscenity and so forth, but I figure if the director didn't manage it, why should I? The premise is that a gay man walks in on a woman who has slashed her wrists in the bathroom of a gay bar (now, really, who thinks that the bathroom of a gay bar offers the privacy necessary to do yourself in?). He asks her why she did it and she responds, "Because I'm a woman." After that profound statement, she proposes that he come watch her in her "unwatchable" moments. Why a gay man would want to watch a woman in her unwatchable moments is beyond me, and was apparantly beyond most of the reviewers. But I'm judging the film without seeing it, based on other reviews that mention the film's imaginative use of a garden implement and menstrual blood. Maybe it has Important Things to Say about women's sexuality and the men who hate it. Or maybe Breillat thinks it's her intellectual duty to be a provacateur.

And about that irritating dialog I mentioned, I just had a look round and here is how Roger Ebert describes it: “They talk. They speak as only the French can speak, as if it is not enough for a concept to be difficult, it must be impenetrable. No two real people in the history of mankind have ever spoken like this, save perhaps for some of Breillat’s friends that even she gets bored by.” I do love Ebert, so I'll let him have the final word in his comment that Anatomy of Hell “plays like porn dubbed by bitter deconstructionist theoreticians.”

At a Theater Near Your

Sometimes I go to On Demand and just watch trailers for forthcoming movies. There's a lot of crap in our future. Two trailers sparked the following questions:

Why have they done a remake of Hairspray? And did they have to give the role of Edna Turnblad to John Travolta? He looks like a fat Cher.

When they turned the wonderful French film Bella Martha into No Reservations, why did they cast Catherine Zeta-Jones as the super uptight, unbalanced control freak chef? Yeah, right. And isn't the title just so cute? The delightful little girl who initiates her journey into normal human life is--can you guess?--Abigail Breslin.

This brings me to some other questions sparked by recently viewed movies. What happened to The Prestige? It was a very enjoyable book, kind of creepy. The movie took bits and pieces of the book and crammed them into another storyline altogether, which was really annoying. Dear Husband, who hasn't read the book and so did not come at it from my perspective, thought it was worse than I did.

Why did I so much prefer The Illusionist, which in retrospect has more holes than Swiss cheese? I would watch it again. The illusions are real illusions, not special effects. That is just so cool. Even the orange tree, which people think can't possibly be an actual magic trick, was perfected by some magician in the 1800s. Some people complain that they guessed the "twist" in the first five minutes. They should keep company with my dad, who used to pepper our movie watching with such observations as, "That's not real blood," "If that had been a real gunfight, someone would be dead by now," "It's all just pretend, you know." I thought The Illusionist was so much more on target than The Prestige about the allure of magic and the willing suspension of disbelief. In The Prestige, Michael Caine's character says that you don't really want to know the secret, you want to be fooled. But that isn't quite true. You want to be fooled AND you want to know the trick. And so in The Illusionist, Paul Giammati's character laughs in delight when he at last pieces together all the parts of the puzzle. No doubt we could go on to discuss cinema as the ultimate illusion blah blah blah.

But onward, if you haven't seen L'Auberge Espagnole, I highly recommend it. A young Frenchman goes to Spain on an exchange program to study economics and ends up sharing an apartment with students from all over. It reminded me of my college days--dilapidated furniture, ashtrays overflowing, everyone staying up to all hours talking or dancing. It's also very very funny. There's a scene near the end, in which all the friends race desperately back to the apartment to prevent one of their crew from being found in a compromising position by her boyfriend. Her brother improvises a solution that is hilarious and unexpected.

Sniper at the Gates of Heaven

Because I think this is an awesome song title, and there is one degree of separation between me and one of the band members.



They were also on NPR.

God, what are you thinking?

This is one of those times when my patience is tested. I think as a family we've been through quite a lot in the past few years. But, no, there's still more. Dear Husband has recurrent sinus infections, which landed him at the ENT. The ENT found polyps and a deviated septum, but he also referred Dear Husband to an immunologist, because he has stopped responding to oral antibiotics. The immunologist took 6 vials of blood and ran every test imaginable.

The upshot is that Dear Husband has some sort of auto-immune disease, the exact nature of which is still to be determined. He's not making enough IGg or some such. The treatment for this is monthly IVs of gammaglobulin or whatever the stuff is.

He also has celiac disease. We've been kind of wondering about that possibility for a while, and his primary care doctor had a test run that came up negative. The immunologist, however, found several indicators (anemia and other nutritional deficits, IBS, lactose intolerance and other measures)and said the best indicator of all is how Dear Husband feels when he eats wheat.

Could life get any more complicated? Our family looks like this:

Me:
ductal carcinoma in situ, mastectomy and reconstruction, possible tamoxifin therapy for 5 years.
bipolar II

Firecracker:
Hypothyroidism
Epilepsy
Asthma
Reflux
learning delays

Dear Husband:
Interstitial Cystitis
Irritable Bowel Syndrome
Primary immunodeficiency
Celiac disease

The only healthy person in this family is DramaQueen.

But, hey, I found out that Outback has a gluten-free menu, and we have a gift card. I guess some provision has been made.

So, God, enough already.

Oh, did I mention that having primary immunodeficiency completely destroys Dear Husband's dreams of becoming a nurse, a career he has set his sights on for the past few years?

Riding the train of thought to the end of the line, with musical accompaniment

And I can see our days are becoming nights
I could feel your heartbeat across the grass
We should have run
I would go with you anywhere
I should have kissed you by the water

You should have asked me for it
I would have been brave
You should have asked me for it
How could I say no?

"I Still Remember" -- Bloc Party

So I’ve got this song stuck in my heart. I keep hitting the back button on the CD player so I can hear it again. While I was recovering from surgery, on of my BILs gave me a mixed CD with some cool music. I have no idea what’s going on in the world of alternative or any other kind of music, so I didn’t’ recognize any of the artists. Among the songs was one by Bloc Party called “I Still Remember.” You can hear it (and watch it) here. If YouTube drives you nuts sometimes, you can go to their MySpace page and select it. What is it about this song? I have no vocabulary to talk about music, but the chorus . . . shimmers. It’s wistful, regretful, but celebratory too: You may be the one that got away, but I can sing about it. The victory of art.

What do I think about when I listen to it? My own adolescence. The song is happy, and my adolescence was crap, so I don't know why it takes me in that direction. High school was a bad time for me. I can remember willing myself to not remember portions of it. Just don’t’ remember—-some day everything will be different and you won’t need this anyway. “This” could be an incident at school, or emotions, or my mother’s craziness and my dad’s temper. I don’t remember, so I suppose my experiment was at least partially successful. What I remember, what I don't remember.

I remember that I was always boiling over with tension from anger and loathing, which I kept under control by cutting myself. This makes me sound as if I were a very dour kid, but when I look at photos of myself from that time, I can’t believe the discrepancy between my self-loathing and dislike of almost everyone around me and how wholesome and sweet and even sunny I looked. I smiled a lot. Well, you're supposed to.

I was an outsider and I hung out with everyone else on the fringes. Being an outsider has its advantages. I could observe the various courtship/mating rituals around me. I had been raised to be good. For girls that means silent and sexless. At the same time, I knew this moral code was nothing more that what they had heard from their parents. Still, I didn’t approve of my classmates. I thought they were nuts, getting obsessed over each other as if it mattered. Fumbling around secretly as if there were nothing more important to do. I’m sure I had the requisite hormones, but I didn’t like the idea of “natural” urges, as they called them in sex ed. “Natural” was such a crock.

Sometime around 15, I became obsessed with Brideshead Revisited. I think I reread that book every year until I was into my 20s. I still own the miniseries. The religious theme didn’t much interest me then. I thought the protagonists took the religious thing a bit too far, and I didn’t really like the second half of the book, when everyone grows up and gets serious and pious. But the first half, which is about the adventures of Charles Ryder and Sebastian Flyte living it up in Oxford and dreaming away months at Brideshead--it was enough to make me want to become British. I thought Charles and Sebastian belonged together forever.

In fact, I wanted to be Sebastian Flyte. And I did try, within the rather limited means at hand. My hair was already short. Silk shirts were out of the question, so I had to settle for button downs with flannel trousers and wing-tip oxfords. I did not look even remotely androgynous, which was what I was aiming for. I was stubbornly curvy and feminine. Not that I actually wanted to be a man--I didn’t feel I had been born with the wrong body, to the extent that I thought about having a body at all. Usually I felt like ectoplasm in a casing. But every once in a while there was an unpleasant reminder that I did in fact have a woman's body--being pinned to the wall by some guy staring at me, or whispering, or whistling, or whatever.

I told my best friend that I would rather be a gay man because it was much better than being a woman. At least two men would be equals, and men already wielded more power than women, not to mention they got the better stories. How could a woman submit to her body being invaded by a man? Were they crazy? It was . . .icky, I mean, demeaning.

I also adored the films If... and Another Country, which got me thinking about the collusion between the petty authorities in schools, and The Authorities, like the loser president sending money to the Contras. I wasn't eloquent in my thinking. Probably something along the lines of: all adults are petty tyrants and yet they are also puppets and they don't know it but I do, so Hah! I see through it all! I am so perceptive!

I did have a “boyfriend.” He was remarkably useful because I was not in the least attracted to him, and if he was attracted to me, well he was too conflicted to deal with it. I didn't have to worry about any advances from him. So, as I said, he was useful. Everyone thought he was a freak, so I had that stand-up–for-the-underdog impulse. But mostly he kept me from having to worry about dates or other boys or the pity of the other girls. He was gay, of course, although how much of that he understood at the time I don’t know. Everyone else knew instinctively, so he was tormented on a pretty consistent basis. That sounds very premeditated, that I found him useful, but really it was unconscious. I’m sure I was very useful to him as well, particularly after that British boy enrolled.

But I didn’t spend all my time in self-destruction and pondering the balance of power between the sexes. I spent a good amount of time giggling with my friends over the cutest rugby players (we watched a lot of Australian football) or--I cringe admitting this--Rick Springfield. We had a list of the three most gorgeous actors (we called them the Triumvirate). Who were they, I wonder? These were safe, since I wasn’t going to encounter any of them in real life. Then there was a my mad, unrealistic crush on the boy in my Latin class, unfortunately unavailable but such a tease, and my first kiss, which I thought was. . . icky.

In the larger world there was the strange man who approached me during a school field trip, a man old enough to be my father. And the man who exposed himself when I visited my brother in Philadelphia (this I don’t remember—-my sister-in-law filled me in several years later). Every day of school I could hear how the boys talked about the girls, crudely, openly, as if it were a great joke. Then there was my father, who filled me with such inexplicable revulsion that I used to hide when he came home from work and hope that he would forget I existed.

Don’t make too much of that last sentence. When I was in the poetry program in NY, I remember how a teacher's comment startled me and I felt like cold water had been dumped over me, because I realized that everyone sitting around the table thought I had been the victim of sexual abuse. I had to go back and reread all my poetry, and yeah, there were a lot of images of grown ups violating kids. Violation of the mind and heart I knew, that was an everyday occurrence, but nothing else.

Revulsion is such a strong word, but it's the right one. The moment I heard his car I jumped up in a panic and hid in the closet or under my bed. And yet he never did anything to me. I just flat out loathed him and tried to stay off the radar. I’ve heard of a term called “emotional incest”--I’m sure someone made some money thinking up that one. You too can be a victim--incest isn't just physical anymore. But I suppose it describes my house of origin as well as anything else. Being utterly powerless, knowing that my mother would go through my drawers and read my diaries, the constant tug of war between my parents for my affection and loyalty. The invisible doctors who spoke to my mom. Her tirades about being the subject of a joint CIA-Russian experiment, and her certainty that my friends were conspiring against me, or we were conspiring against her. My father’s threats to have her locked up, or to walk out. His disgusting attempts to win my allegiance so that we could gang up against my mother. Accusations flew around that house that I still don’t understand to this day. There was no getting away from any of it.

Not long ago a therapist suggested hypnosis as a possible way to work through some of this, but I cannot be hypnotized—I’m too well defended.

And this is the last station. Isn't it odd where you can end up listening to a happy little pop song?

How I Spent My Birthday

First I went to see the oncologist. My surgeon referred me because the ductal carcinoma they examined was hormone responsive. So I have to consider taking tomoxifin, which blocks estrogen. The oncologist told me there was a huge European study that showed no benefits and a huge American study that showed significant benefits. The risk of recurrence for me is small, but tomoxifin would cut that risk in half. So I have some thinking to do.

Second stop was my primary care physician, because I have a sinus infection. Again. If this keeps up I'll have to see an allergist, or an ENT, or something. Dear Husband has seen and ENT and needs surgery, but the ENT referred him to an immunologist, who drew six vials of blood and is testing him for every auto-immune disorder known to man, because he thinks Dear Husband has an auto-immune disorder triggered by the environment. I don't want to think about what direction we would have to take if they did find such a thing. Dear Husband wonders if we should move to Colorado Springs.

Side note: My doctors are very good-looking. It's kinda distracting.

Then on to summer camp to drop off paperwork. We had lunch in there somewhere, and we were taking a nap when the auto repair shop called to tell us that the repair to Dear Husband's car would cost $800 because Mazda would have special order it from Japan. The think this will fix the problem.

Despite all this, Dear Husband still brought home an ice-cream cake for me. Sweetie. But we are now faced with a bad car situation. We do not have $800 to repair the car, this after paying $300 previously for what they thought would fix it. And what next? More problems, more repairs? Our best chance is to roll our current upside-down note into the purchase of another car.

Isn't that pathetic? Because we can't pay for a repair, we have to trade in for another car, because that's the only credit we have at the moment. And our credit rating is only fair. And we have to buy it this weekend, because Dear Husband's car will eventually just not start. Dear Husband managed to find a good deal, and now I'm waiting the dreaded call to go sign off on the paperwork. He signed off on his part yesterday, so this is supposed to be simple. Right.

But this weekend he took me to an Ethiopian restaurant for dinner. Ethiopian cuisine is one of my favorites and I was in heaven. The two Ethiopian beers helped, too.

Today Dear Husband is off with the girls watching Shrek III, and I'm trying to finish up editing a children's book on the Little Rock Nine. More about that later, perhaps, since it got me thinking. But I keep getting distracted by YouTube, where I go to watch clips of tango dancing. Really, my mind jumps around a lot lately.

Forty-One

DramaQueen: Happy Birthday, Old Person. (Thinks a moment.) You're older than Dad but he's taller than you.

Firecracker: And he has a big, big tummy!

Candy Crisis Averted

I finally found some nice Brazilian woman's recipe that made some modifications and cleared up something. I guess in Brazil, Nesquick is just cocoa powder, not the noxious drink we stir up for our kiddies. With real cocoa, a microwave, and a touch of cornstarch (bless you lady, wherever you are--you're a genius), I was able to whip up the brigadeiros and DramaQueen sold every last one of them. They were using "Brazilian bucks," so I'm not sure what benefit that was to us. But it's done.

And now the shocker--school's out on Wednesday. I had completely forgotten this, despite getting the notice of Firecracker's "moving up" ceremony and the other various notices and warnings. It was the packet from summer camp that finally put me in my right mind. And reminded me that there's a gap of two days between when school ends and camp starts. Why--are the public schools and daycare in cahoots? I have a list of items to purchase for camp (and this isn't sleepaway camp) and all sort of forms to fill out, and I'll have to get the uncooperative pediatrician to print out the immunization forms (they can't be bothered to fax them). When did I think I would do all this? I haven't even asked if I can take the morning for Firecracker's ceremony.

And on my birthday, I get to visit the oncologist, to see if I need to be on something nasty to keep these hormone receptive cells from appearing in the other breast. I also have a sinus infection and my right side hurts when I sleep. My doctor has me doing "nasal irrigation" which although it isn't painful is really weird. It would be nice if the oncologist could do double duty and prescribe an antibiotic while I'm there.

On the positive side, and something I forgot to mention while I was in the land of percoset and valium, DramaQueen gave Dear Husband a hand-made birthday card that began: "Dear Old Person".

Friggin School Projects

So, DramaQueen has been learning about Brazil. For weeks they've been earning "Brazilian bucks"--for doing what I don't know. So we get this notice that the lessons will culminate in a Brazilian Market, and that each child should bring in 25 (yes, 25) homemade items to sell. And you should have seen some of the suggestions: paste a picture onto cardboard and cut it up to make a jigsaw puzzle. Yeah, right. That's going to be a busy booth. Or I imagined trying to help her make 25 paper flowers, or 25 bookmarks, or 25 painted rocks, or 25 anything.

Well, Dear Husband has some experience with Brazilian culture (or should I say, with Brazilian women), and he told me about this sweet called a brigadeiro. He even found a recipe. Cool--it has only 3 ingredients: sweetened condensed milk, butter, and Nesquick cocoa powder. How could I go wrong?

Well.

First, there was a certain vagueness about how long to cook the mixture. "Until you see the bottom of the pan." Hello--we're working with condensed milk, you can see the bottom from the start. So the first batch I cooked for maybe 10 minutes, and that didn't set up at all, so I shoved it back into a pan today and cooked it for about a half hour more. Then I started a second batch, trying to match the increasing viscosity of the first batch. Seemed to get thicker. So, rather than about 10 minutes, as one recipe suggested, I cooked it for nearly an hour. Poor DramaQueen gave out after about 10 minutes of constant stirring.

I had a bad feeling about waiting until tomorrow so DramaQueen could help roll them into shape. I just finished trying to roll the goop into balls and roll them into jimmies and cocoa powder. Fine as long as they're chilled, then they just spread out like a lake. Finally I popped them into little cupcake cups. Someone said they tasted like tootsie rolls. In a pig's eye. Dear Husband says the taste is about right. Obviously his tastes were unformed at the time of his interaction with the Brazilian "community".

Well, to me it tastes like really sweet sticky milky goop. I'm nuking the hell out of the rest of it just to see what happens. I estimate that it would take two hours of conventional cooking to get to the tootsie roll stage. Maybe kids will like it. It's full of sugar and messy. If I lived in New York, I would have done the sane thing and located an actual Brazilian bodega (or whatever the appropriate Portuguese word is) and avoided this whole nonsense.

An Hour Later:

This is a total mess--completely unusable. And BTW, never try to nuke the hell out of a caramel mixture. Now I have tomorrow to come up with a suitable substitute. At least it doesn't have to actually have anything to do with Brazil. I'm so not doing Brazil nuts--blech. So the dollar store it is. Any suggestions?

DramaQueen is not going to be happy.

Browsing in Dream Bookstores

I awoke this morning with another vivid dream. Unfortunately, this one did not involve David Krumholtz or God. Instead I dreamed about bookstores.

I walked into a used bookstore and started to browse. The salesman was very friendly and talkative, and I was alarmed to realize that he was assuming I was going to buy every book I casually glanced at, since he was gathering them together. And yet I couldn’t bring myself to protest. I left, promising to come back.

Next I walked into what was obviously a gay and lesbian bookstore. I walked to the back, where there were clothes, of all things. “These really are cute,” I thought, “and they come in my size.” Then the owner came over to welcome me and gave me a form to fill out, which I reluctantly did. But there were abbreviations I didn’t understand. What did “C” mean? Closeted? But there didn’t seem to be a letter that could mean “out.” What about “M”? Married? If I marked that would they assume I was married to a woman? Should I just mark it anyway? Would they hate me if they found out I was married to a man? Why was I here at all?—I was such a fraud. Then I realized that she was ringing up a book she thought I wanted to purchase—it was a copy of the Childcraft book of stories from many lands that I loved as a child. (I used to make my mother read “Nannette and the Chateau” to me every night. I re-read this as an adult and, boy howdy, Freud and Jung could have had a field day.)“But I already have that,” I thought, “and it’s expensive--$51.” But again I couldn’t seem to decline.

The dream ended there.

To top things off, I woke up with an old Lloyd Cole and the Commotions song running through my head: “Perfect Skin.” “She’s got cheekbones like geometry and eyes like sin, and she’s been sexually enlightened by Cosmopolitan.” This was particularly annoying because I always preferred his song “Rattlesnakes” from that album.

God

Some Good News

Well, the doc says Dear Husband does not have shingles but a really really bad yeast infection. I think his words were, "Even women don't get it this bad." Or, if it doesn't go away in a few days with treatment, the doc says, then it's shingles after all.

Sometimes the clarity of medical science is just amazing.

Numbers is on tonight!

Oh, as if stage 0 cancer weren't enough for one family

now Dear Husband appears to have shingles. In a very sensitive area, right in the groin (all you men go "ouch"). I've had shingles (over my eyes--had to go to ER on Christmas Eve to make sure I didn't go blind). My first husband had shingles, too. Wow. I'm kind of a foci of shingles.

Now, let's see--Dear Husband is in excruciating pain (and it's only going to get worse--I should know! and I still can't lift anything over 5 pounds.

Perhaps I should stay part-time for another week.

Day 2 of work and some fanciful rambling about nothing much

I'm going to go take a nap. Really. I'm drinking a big glass of water, which is good for you, and that's the only reason I'm sitting at my computer instead of resting like a good girl.

I finally dug through more email to find that my boss had asked a number of people to review and return stuff to me by yesterday. Thankfully I did find everything, eventually. Except my center. Well, the plastic surgeon did reorganize my mid section. My center may have migrated. It's probably in the wrong chakra now, and that's why I dream about David Krumholtz. Could be worse. Only now to get centered . . . well, never mind.

A little chocolate, and then a nap. Bless the church lady who brought me this ginormous block of Hershey's milk chocolate. And I'll admit that sometimes I snitch my kids' candy. They have tons of the stuff from Easter. Bad Mommy.

Oh Crap

And this was just a half day. I came home and slept until 5pm. I had 500 emails in my inbox. And my pay will be short about $400 because of unpaid leave. Whee. Thank you God for people who want to bring us casseroles, and for our church, who sent us a love offering.

Oh, and the pollen count is sky high and I feel like I have feathers in my throat.

Hi Ho Hi Ho It's Back to Work

So after my super duper revelatory previous post, it's back to the mundane.

I'm going back to work tomorrow. Wednesday, Thursday and Friday I'll work half days and then start back full-time next week if all goes well, meaning I don't collapse or something along those lines.

I've discovered something. I like not working. I've always been a working mother type--get out there and have my own career.

But that sucks.

And I don't really have a career. I have a job I stumbled into that luckily is decent and has decent people. I'll be very very busy and rather bored at the same time. I'm bored because there is a constant bombardment of email every day. We have response time rules--within an hour for the Powers that Be, shorter if possible, and within a day for outsiders. That means that at all times I have to interrupt my work to scan for A Really Urgent Matter that Takes Precedence.

Then I'll rush off to daycare and pick up my kids. I will have maybe two and a half hours to spend with them getting them fed, checking homework, getting them read to, bathed, and to bed. If I take the time to go to the gym, I'll have less than an hour (not that the gym is in my future for a few months). In the morning I'll have to move them along like a dictator to get them to daycare on time. By the weekend I'm tired and limp while they have boundless energy.

What can I say? My income is higher than Dear Husband's. He's staying at a job he doesn't like for the free tuition. Then he wants to go to nursing school. Last month I think we paid nearly $300 in prescription medicines alone. This month there will be at least $300 in visits to specialists.

On a positive note, you may remember in a previous post that I complained about DramaQueen's teacher. Well he has mysteriously vanished (been removed or removed himself, the principal can't say for reasons of confidentiality--meaning so no one can sue the school) and someone else is taking over. I told her some of my concerns (SNL skit sneaking into educational video, weird and humiliating nicknames for the kids) and she told me to put it in writing. I really did like him, but after Christmas he seemed to go off his rocker.

Update on Surgery, dreaming of David Krumholtz, and St. John of the Cross--All in One Post!

Well, I was planning to continue my eye candy theme, since I realized I had left out a few deserving individuals, but blogger did not cooperate yesterday with images and I'm not in the mood to tangle with it again. So straight text it is for now.

For those of you who have followed my surgical adventure, I am almost ready to go back to work. Actually, I'm not. I'd rather not ever go back to work but Dear Husband insists this is necessary. I'm starting with half days next Wednesday.

On Tuesday the plastic surgeon removed my last two surgical drains. Yahoo. Now I can actually wear clothes. She also injected the first dose of saline. You may wonder how an expander works. Or not. Doesn't matter cause I'm going to tell you anyway. The surgeon placed this empty sack with a metal disk under some tissue in my right chest (or maybe it's muscle--sure feels like muscle). The metal disk is there so the surgeon can use a magnet to find where to inject the saline. Every few weeks I go back to be inflated a bit more. At some point some decisions will have to be made about when to put in the implant and what to do to make the other breast match. More surgery. Sooo Hollywood.

Right now, I look like hell. There are crosshatches across my right chest, which has a slight bulge to it. I've decided to call it Frankentit. I also have a very long scar along my abdomen, since the surgeon did attempt the tram flap. My midriff is numb as a result. I have to do exercises with my right arm, walking it up the wall, because the muscles along that side of my chest are very angry with me and would like to go on strike.

Now, this brings me to a dream I had about David Krumholtz (see previous post). Actually, this doesn't bring me to any such thing but I can't think of an elegant segue. This was a very pleasant dream. You can interpret "pleasant," I imagine. But oddly, when I awoke it wasn't with a fuzzy warm afterglow but a sit straight up in bed "What the hell was that about" feeling. I don't usually remember dreams. When I do they don't seem important. But this one I wrote down because it puzzled me. I came up with these two approaches: 1) the dream simply means I'm not getting enough action 2) the dream is about being the bride of Christ.

Number 1 is true of course, given the surgery. Even when you feel like hell for an extended period there still part of your erotic nature egging you on "Get a move on, girl, things are getting boooring."

But number 2. Now don't laugh at such a high falutin' interpretation of what seems to be the most straightforward of dreams. And really, doesn't it make a certain amount of sense that a nice Jewish boy would stand in for Christ? I'm not divulging the details, since they have meaning only to me (unless you really want me explicate the Indian print skirt with the mirrors that I'm wearing in the dream--and believe me, I can), but the themes were defense, risk, surrender. I've been thinking about surrender a lot. What exactly does it mean to surrender yourself to Christ? People talk about this so glibly. "I surrender myself to Christ." How? What does that look like? How does that play out? What does that feel like? Do you just start acting as if you know what it means? You do some good things that Christ did and take it from there? Pray and keep going?

Defense. I am a well-defended person. You probably would not guess that from just speaking with me. I'm very open and friendly. I can make you laugh. I love conversation. I can be remarkably frank. I'll tell you my secrets, even. At least some of them. But I will keep them if I have to. I even keep secrets from my therapists. Would I tell my current therapist about this dream, even if I find it significant? Doubtful. When I was in college, I began to cycle through the campus mental health care system. During summer I was pretty happy, still a bit shy but also a bit of a party girl. Then the pendulum swung the other way. I went into yet another intake session and answered the usual boring questions, answering them in ways I knew would get me into actual counseling. The therapist was about to dismiss me when she noticed something. I was wearing long sleeves, and she caught a glimpse of the recent gashes on my arm, something I had quite deliberately not mentioned. I didn't think it was any of her business. I'm not sure I've ever told the complete truth to any therapist. In general, I know what to say to keep things moving along the way they need to go--yes, I still need the antidepressants and the mood stabilizer, thanks so much, and yes they are making me feel ever so much better. I'm taking these steps to accomplish x, and I've found that by doing a, b has become so much easier. I deflect. I can generally charm.

My current therapist once suggested hypnotizing me and I could feel myself start to freeze up. I don't hypnotize. It's been tried. I constantly monitor. My brain starts to analyze frantically: the soothing voice, the fact that I'm supposed to be relaxing, that sound from the air conditioning vent, the fact that nothing is happening, what is that scent? lavender? Nothing is happening. I'm still right here. My mind is still right here. Is there anything in there I should be afraid of? I don't know. Probably not. I don't think there are buried childhood traumas or anything like that. I just don't want anyone penetrating my mind.

Risk. Given my defensiveness, you would think that risk would play a relatively small role in my life. Avoidance at all cost. But there's that pendulum, when it starts to swing the other way--I jump. Sometimes it's benign--I spend all summer rallying for an antinuclear group. I join the college choir (well, the ones who could actually sing probably did not find that benign). I move to New York and write poetry. I fly courier to England get a student work visa and stay there for three months. Then there are the darker impulses--quite a few drugs, recklessness of various kinds.

Surrender. When I was about to graduate college, I saw an exhibit by Bill Viola at MOMA in New York City. One of the installations was called St. John of the Cross, someone I knew nothing about. The installation was a small room with a desk, a pitcher, and a video monitor with a still image of beautiful mountains. The room was tiny; it was supposed to be the size of his prison cell. It was lit from inside. The small room was in a large, dark gallery, filled with the sound of wind blowing, and the image of mountains projected on one entire wall, a jerky image, hard to watch. When you were close to the small hut, you could hear a voice speaking poetry quietly in Spanish. When I could, I searched out a book of his poetry in translation.

There was this from Living Flame of Love:

O living flame of love
that tenderly wounds my soul
in its deepest center! Since
now you are not oppressive,
now consummate! if it be your will:
tear through the veil of this sweet encounter!

and this from Dark Night of the Soul:

7. When the breeze blew from the turret,
as I parted his hair,
it wounded my neck
with its gentle hand,
suspending all my senses.

8. I abandoned and forgot myself,
laying my face on my Beloved;
all things ceased; I went out from myself,
leaving my cares
forgotten among the lilies.

He's having sex with God, I thought. How'd he get away with writing this anyway? Oh, yeah, the "soul" is in "union"--it just sounds like sex, if you're profane. Better minds than mine have written about the erotic content of mystical writings, and the bride and bridegroom imagery, the Song of Songs and so on. No doubt reading it all would make my head hurt.

In my dream, I was a virgin, and he told me that if I spoke three words, I would be his betrothed, and that I should not speak them until I was sure.

Having Nothing Better to Do, Some Eye Candy

Well, actually I do, but this is more entertaining--I decided to rank the sexiest men I can think of (except Dear Husband, who beats them hands down. Of course.) I don't have his picture here to prove it, but he is a cutie.


Actually, this isn't a ranking, since I'm not putting these fellows in any particular order, but thought I would just ramble aimlessly until I ran out of steam. So to speak.

First, there is Colin Firth. Those of you who fondly remember the wet shirt episode in the BBC miniseries Pride and Prejudice, know how very effective understatement can be in conveying a . . . mood. I also unabashedly love the Bridget Jones movies, much to Dear Husband's disgust. (Really, he's one to talk, given that he ogles the Victoria Secret models.) One of my coworkers told me that her sisters actually have an adjective--firthy--to describe a particularly good looking man.









Next, there's Alan Rickman. To my delight I have discovered that there are whole websites devoted to Slytherin House and Severus Snape. Just proves that a bad boy is always attractive. But I first saw him in An Awfully Big Adventure, which also featured Hugh Grant, who will not be included in my list, as I do not find him wildly attractive. Rickman was also in Sense and Sensibility, and if that little snippet had any taste she would have seen from the first that he was much preferably to that fellow with the tight perm. This photo is probably rather old--I skipped the ones in which he's starting to look like Yoda, but he still manages to look dangerously appealing as Snape.












I move on to Hugh Laurie. I adore this actor. I have the BlackAdder series, in which he plays the nincompoop Prince of Wales (not the current one, but the one under Mad King George), and I've rarely laughed harder. House is now one of my current favorite TV shows. He's so mean and sarcastic--inaccessible men are just madly attractive. I had a teenage crush on Sherlock Holmes, for example, and you can't get more inaccessible than that.













Not too long ago I saw the movie Amazing Grace. What a great film. Couldn't figure out the timeline at all. Couldn't figure out how a woman could spend an entire night in conversation with a man without ruining her reputation. Couldn't figure out why Rufus Sewall didn't get a haircut, or why he suddenly appeared in one scene walking through the fields holding a baby. Was it his child? Or was he just taking a friend's infant out for a discourse on nature? Anyway, this entire film was about the incredibly gorgeous Ionn Gruffud. I mean, it was about abolition, too, and that Wilbeforce was one terrific guy, particularly since he looked like this:












Finally, my latest acquisition. I've always been a fan of Numbers. I love the way shows like Numbers and CSI have to casually insert huge swathes of explanation to move the plot forward, all the while making the delivery look natural, and none of it makes sense but somehow you feel that you understand it. David's character is always having brilliant breakthroughs that make no sense at all, but he's so cute explaining them. They need to stop fiddling with his hair, though. Geniuses are supposed to have messy hair, for petes sake. But, I think it was his performance as Mr. Universe in Serenity that landed David Krumholtz on my list of extremely attractive men. How could you not love a man who with his last breaths provides essential information to his comrades by recording it on his life-size electronic love doll? Sheer genius.

Rev Gals Friday Five

What I am

1. Wearing: my nightgown and two surgical drains. Very fashionable.

2. Pondering: When will I ever get rid of these last surgical drains so I can wear real clothes? (btw, it hurts rather more than I expected to have surgical drains pulled out. I knew I was in trouble when the nurse told me to take a deep breath.) How long until I have a normal-looking right breast? How much more time am I going to have to take off to have the rest of the reconstruction? How are we going to pay to fix the car? How are we going to pay for my meds, now that they've been bumped up from tier 2 to tier 3? How am I going to get anything done when my MIL leaves tomorrow?

3. Reading: I think I have finished the entire Artemis Fowl series. I have to check Amazon. Someone lent them to me to keep me from being bored.

4. Dreaming: Of never going to work again and instead staying home and homeschooling my children, so that their natural curiousity will blossom, and DramaQueen will replace the lyrics to "I like big butts" with arias, or jazz, or something, and we will take wondeful, educational field trips that inspire them to learn yet more about whales, the ecology, Matisse, anything. The fact that DramaQueen's teacher makes up humerous names for the kids also makes me think I should jump ship--he call her Butsy. Yeah, charming. Oh, and there was the time he accidentally showed them a skit from SNL that featured three friends: the letters U, C, and K, who made a new friend, the letter F. The note back from the teacher said that she was the only one who "obviously knew what the word meant". Am I imagining it or was that snide?

5. Eating: A Reeses Peanut Butter Cup that I found on the bookshelf where I put it before I went to the hospital. And drinking coffee.

Almost time for my next valium and my arm mobility exericise.

I'm back, sort of

Well, here I am. I'm too tired to explain the ins and outs of the past week, so I refer you to my husband's blog www.stilljewish.blogspot.com. Hardly any pain, but I feel like an octopus with drains pinned on my nightclothes. Not very pleasant. The operation did not go as planned, which is a big disappointment to me, but I've been saving up to cry after the abdominal incision has healed. Pathology shows no invasive cancer, so that is news to celebrate. I have to walk around a few times a day, and since I can't stand up straight yet, that is very tiring and about all I can handle. A kind coworker sent me a supply of Artemis Fowl books to read. Actually, friends, family and coworkers have showered us with kindness. I'm particularly blessed that so many folks have undertaken to entertain the girls. Dear Husband is in pain from his own illness, which saddens me. My MIL also has her own disease to contend with, and she's handling all the housework as well as picking up the girls and keeping them on track. I admit that few times I've done some things that I shouldn't just because I know everyone else is near exhaustion. It will be a while before I can drive again.

Well, that wasn't very coherent and didn't exactly flow, but that's the best I can come up with for now.

Waiting

DramaQueen has strep. I am lucky enough to have a doctor that sees patients on Saturday, so I was able to take her in just days after I visited for a sinus infection. If I get sick, the operation will have to be postponed, so I am willing myself to health so I can get this over with.

Someone in work commented, "You seem so calm; are you falling apart inside?" Dear Husband has made similar comments about my lack of grieving. Of course, right now I still have my right breast. It has not yet been replaced with an alien. For traumatic events (deaths are a different matter), I tend to grieve later--sometimes years later. Right now I have only one focus, which is to get to point A. How fitting that I should lose my breast on Good Friday. How could matters have been better arranged? I wonder if I will sleep through most of Easter, and will I be in the hospital for more than 3 days? I don't have the aversion to hospitals that some people experience (except for the knowledge that the longer you're there, the more likely you are to get an infection), but they are very dull.

Some other matters I've pondered: I'll be intubated for the surgery. That is a weird thought. I'll be catheterized as well--that's always jolly. I won't be able to eat or drink for I don't know how long after, in case they have to rush me back in. There will be some sort of inflatable things on my legs to keep me from getting blood clots. Of course, that brings to mind that I will be in danger of getting blood clots.

During the hospital assessment, the nurse asked me if how well I handle pain. Now, does anyone respond, "Oh, I can handle quite a bit, no problem"? And, if any of you do, are you crazy? Some people would rather be in pain that "out of it." Again, I ask, are you crazy? If I have to be stuck in a bed with a catheter, inflatable cuffs on my legs, and no food or water, I better get morphine out of the deal.

April 6

That's the date of my surgery. Thank you everyone for leaving me encouraging comments. Thank you for your prayers. My natural pessimism comes out at times like this and I start thinking about resistant strep and catheters. I also have an increasing and (I hope) unreasonable fear of being one of those people who wakes up during surgery paralyzed but fully aware of what's happening. I know I'll get to meet my anesthesiologist briefly, but what--he's going to tell me if anyone's woken up on his watch? The plastic surgeon has already sent me the scripts for post-surgery meds, which is comforting--percoset, valium. They can all be waiting for me on my return. How will Animal Planet look through a haze of percoset and valium? Did I mention that my MIL watches almost nothing but Animal Planet? And the news, which we have to watch in all its awfulness, even though you can go online and get it without having to listen to or look at the talking heads. Oh lordy, I think she watches court tv, too.

I think it will be a good time to watch the BBC miniseries of Pride and Prejudice straight through. And maybe both Bridget Jones movies.

I've also developed an obsession, as usually happens with me during times of stress. Right now it's homeschooling. Dear Husband will attest that I have checked out all the books available on the topic from the local library. And now I've ordered a set of the homeschooling books by Charlotte Mason, who is just way cool. There's a school here that follows her methodology, but it's expensive and you have to sign off on their statement of faith (probably could handle this), and their abortion position (too strict), and their discipline policy (which is mostly gentle but they make you sign up an okay for spanking "if needed"). Actually, anytime a school starts talking about "covenant children" I feel squirmy, as if I've walled my kids up in the Christian ghetto where the only thing on their IPod will be inspirational Christian pop and evolution has been carefully filtered out and replaced with, well, whatever it gets replaced with these days. Not the Bible, because the gigantuous Christian book publishing industry can't leave a marketing niche unfilled, while they continue to crank out Bibles in colors to coordinate with your outfits.

Well, I got a bit off topic there.

And now it's time to get Firecracker and DramaQueen to sleep. Hah.

Surgery

I haven’t posted because I’m just plain tired and my attention is flying off in all directions. The second biopsy discovered not only more atypia, but ductal carcinoma in situ, which is basically level 0 cancer (it’s contained and hasn’t spread). This biopsy was from an area that had not originally been targeted as suspicious, which means that most likely there is advanced atypia and who knows what else in all areas where there are microcalcifications. Meaning, everywhere. Meaning, I have to have a mastectomy. Meaning, a 6-8 hour operation, a 2-3 day hospital stay, and a month off work.

The upside? The plastic surgeon will use the fat from my abdomen for reconstruction. Glad to put it to good use. Also, I’ve been advised not to do laundry or other housework. Dear Husband will say that I never really did it in the first place, but at least I now have a medically sanctioned reason.

Rev Gals Friday Five—A Matter of Taste

1. I love olives. Dear Husband despises them. But he’s sweet and will think to buy them for me.
2. I like liturgical services. Dear Husband thinks they are dull and stilted (and too papist) and prefers contemporary worship.
3. Oranges are one of my favorite fruits. I don’t think I’ve ever seen Dear Husband eat one. My girls don’t like them, either, but they will drink orange juice sometimes.
4. Reading is one of my greatest pleasures. Dear Husband prefers books on CD--or the movie if that’s available.
5. I love the Arizona desert landscape—the saguaro cactus, creosote bushes, mesquite, big sky and rocky scrubby land. Dear Husband thinks it’s ugly and barren and that hell must look like Arizona.

And now, the thinks my husband likes that I don’t:

1. Liver and onions. I don’t know how anyone can eat that stuff. I mean, it’s the filtering organ for pete’s sake.
2. Right-wing talk radio. Yuck. And yet he also likes NPR, and adores Prairie Home Companion, featuring that adorable liberal, Garrison Keiller. He is a man of contradictions.
3. The Left Behind books. Gag me with a spoon.
4. Contemporary Christian music. Okay, so there’s the occasional song or group I enjoy, but they are few and far between. In general I think this music is shallow and bland—the lyrics are banal and the compositions are pathetic.
5. Pat Robertson. How did THAT happen, I ask you.

3 biopsies, 2 ultrasounds, and 1 MRI

So, what had seemed like a simple matter keeps expanding into new territory. The surgeon I've consulted is not happy with all the calcifications in my right breast. She's worried that more atypical ductal hyperplasia is hiding out. An MRI did not help clarify the matter, but it did "light up" on the left breast, so now I have to have a biopsy on that side, too. And since the area in question doesn't show up on mammograms or ultrasounds, I'll have to have an MRI guided biopsy. So, I get to lie in a tube, with an IV and earplugs and a headset while the biopsy is performed. Maybe they'll be nice and remove the headset. Meanwhile I've had a second biopsy on the right side, to see if other tissue is affected. The doctor is sending off everything for a second opinion, because, as she says, "It's complicated."

Besides my own journey through the local hospital, Firecracker has been having more seizures, so her neurologist will be sending her to the hospital for a special EEG, one that will last from 3 to 5 days. They'll reduce her meds to induce seizures so that they can figure out what part of the brain is producing them. And at some point they'll whisk her off post seizure, sedate her, and do an MRI of her brain. That means that she won't be able to eat or drink anything. And, of course, she will have to remain in bed the entire time. And they will be videotaping her as well. This is happening in late April, unless we get to the top of the cancellation list. How do I amuse a bed-ridden but energetic 5 year old for 3 or more days, particularly when she can't eat or drink? I'm exhausted just thinking about it.

And now, something besides anxiety, sort of

I've been reading two books, Unconditional Parenting by Alfie Kohn and The Myth of the Perfect Mother: Rethinking the Spirituality of Women by Carla Barnhill.

The Kohn book I started reading after an exasperating attempt to implement an incentive chart. It didn't work for me. I felt that I spent all my time monitoring every blessed thing the girls did to see if I needed to add points or subtract points, and I had a sneaking suspicion that getting them to comply wasn't the same as encouraging actual kindness, helpfulness, and general character development. When I started investigating my feelings about incentive charts, I ran across Alfie Kohn, who has taken up arms against most conventional forms of behavioral modification in favor of, well, something rather amorphous that combines listening, respecting children, playfulness, and the avoidance of criticism OR praise as forms of parental manipulation. That last floored me, because it's drilled into us to praise our kids as much as possible. Though I have at times thought that gushing over every kind or nifty think my kids did was an easy way of not actually thinking about any of it very deeply. Oh that's so beautiful honey, what a great job you did! On to the dishwashing. He referances research that shows that children praised for doing nice things actually act less generously in situations where there's no "reward" and children begin to loose interest in projects and activities after parents praise their efforts, or they start thinking only in terms of how to earn another pat on the back. Anyway, I have only an imperfect idea of how to parent the way he describes, but has been a very thought-provoking read. I have another of his on my stack to read: Punished by Rewards: The Trouble with Gold Stars, Incentive Plans, A's, Praise and other Bribes.

The second book addresses the problems with the "ideal mother" as promulgated by mainstream evangelical Christianity--the mom who never complains of boredom or dissatisfaction because motherhood is her ultimate calling, self-sacrificing, stay-at-home, homeschooling, success or failure measured by the behavior of her children, which in turn indicates how well she is training them in the faith. There's some of that where I work. One woman told me that she didn't believe teen rebellion was inevitable, if a child was reared properly (so of course rebellion would be a sign of poor parenting). Homeschooling is how you keep your children from the evils of evolution. Spanking is biblically mandated and if you don't you're some kind of liberal weirdo. I even heard one woman mention the Ezzo's, who are crazy wacked out Christian child rearing "specialists" who believe in something called "first time obedience," which sounds like it would be at home in a fascist regime. Then there was the time I read a forum discussion on schooling where one angry dad declared that he "wouldn't sacrifice his covenant children in the public schools." Well, back to the book. Barnhill is much nicer than I am, since I'm inclined to throw my hands up in exasperation and find a children's illustrated guide to evolution, so there.