Dear Mr. Endocrinologist

I understand that we were supposed to visit you 6 months ago; however, it proved extremely difficult to juggle our various priorities and medical concerns. 2007 was hell. We went through breast cancer, mastectomy, reconstructive surgery, a week-long in hospital video EEG, immune disorders, a diagnosis for our child that threw us for a loop, reconstructive surgery, and did I mention more reconstructive surgery? And 2008 isn’t looking so great, either. Today I am using my non-existent sick leave to visit you, prior to the non-existent sick leave I will have to take for my daughter’s week-long surgery, for which I will receive no salary, much as we need the salary to cover deductibles, co-pays for doctors and specialists such as yourself, and the $1000 a year in meds that we require.

So, amaze me. Pull out all the stops. Demonstrate all you know about the connection between the endocrine system and tuberous sclerosis. Order some more tests. Examine my daughter from head do toe. Because I better be here for more than you glancing at my daughter for a few minutes and handing me a prescription.

Sincerely,
Very ticked off mother

Cough, Cough, Cough

Cold fingers have been playing along my spine today. Firecracker has caught whatever virus I had and is coughing. Her school nurse even called today, asking to use the nebulizer sooner than indicated. Pneumonia, I worry. Pneumonia, pneumonia, pneumonia. We have spent a lot of time with Firecracker in the hospital with pneumonia. So today I have a dark feeling of dread. Isn’t it odd that I find this more sinister than the upcoming brain surgery? I guess it is because I remember how long she was on oxygen after her birth, and how the nurses gave me steroid shots in the hopes of maturing her lungs before I finally gave birth. They only got to inject 2 of 3. Would that third shot have done the trick? Because she was so premature, she has chronic lung disease. That sounds so ugly: chronic lung disease. I prefer the way the pulmonologist termed it: bronchopulmonary dysplasia. There’s nothing to be done about this chronic lung disease. They can’t remove it the way they can remove a tuber from her brain. She’s stuck with it, on top of worrying about whether the tuberous sclerosis will affect her lungs as she gets older and cause LAM--lymphangioleiomyomatosis--which can only be cured with a lung transplant.

I've spent almost 6 years now worrying about Firecracker. Those 2 months in the NICU after her birth were just the start of an endless journey.

Gratitude

There have been a lot of visits to Firecracker's Caringbridge page recently. Dear Husband alerted me to the sudden boost in traffic, and I know that many of you RevGals have been there to visit. Thank you so much for your prayers. I've been amazed at the love shown to us.

My posting has been sluggish. I suppose I've lost some of the fun of it. My energy has flagged. I've exhausted much of my good humor.

Certainly not everything has been dreary--not by a long shot. Christmas was wonderful. DramaQueen had a lovely birthday party, and a friend and I are planning a pirate party for Firecracker--there will even be a treasure hunt. It snowed one day and we all went outside and had a snowball fight. That was one of the best days, one of the most purely happy days I've known of late. My friend is also organizing a logistical chart to coordinate help during Firecracker's hospital stay, as well as rounding up my coworkers to make posters and create fun diversions for her.

I'm home sick today. That gives me the chance to rest in more ways than one. Last night I woke up terribly frightened. I wasn't awake enough to sort out what I was afraid of, but my muscles were tensed and my heart racing. I need a rest from such moments. I need a rest from trying hard to focus and concentrate. No wonder I caught the flu or whatever it is. My brain has worn itself out. So I'm grateful even to be sick right now, because I can rest and just look out at the sunshine from the sanctuarly of my bed.

Thanks again, everyone.

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.