Leaving Irony Behind

I feel like I left the tyranny of irony behind me at Tomales Bay. I can only be vague here, but I think most would agree that I am adept at irony, maybe even a mistress of it. The picture above is of an old, abandoned building at the Marconi Conference Center. We walked by this beautiful building several times a day, from the hours just after dawn when northern California mists floated in and around it, to the blackest hours after the sun had set when bats swooped, invisible but heard. In the middle of the day, you could walk up to the many windows, cup your hands at the side of your eyes like blinders and make out the sun-glistened ocean of the harbor, glinting through the windows on the opposite side. Nearly everyone I walked with or spoke to expressed their dislike of this building. 

Creepy. Horrible. Scary. Like a mental institution. 

I thought otherwise, wished I could climb through the broken windows and wander the rooms, dance slowly and silently in the grand room I could barely make out when I squinted. It looked out on the ocean. I liked it especially at dusk when it seemed most haunted, when I could imagine its inhabitants a combination of old world formalism and the rugged frontier that was California in the nineteenth century. The woods and unruly plants and flowers grew up and around it, sometimes if I cocked my head, it appeared slanted, its peaks barely reaching, more earth than sky. I have no idea how old this building was nor what it was used for, and I had no desire to learn.

I left my irony there, a visitor grown pale, wispy, cold and of no use. What remains is vulnerability, something raw and lusty, no blinders, blinding not blinded.

When Your New Driver Teenager Forgets to Text You That He's Arrived Safely at School

I am wondering whether he's getting ready to ask me for a new pair of lacrosse cleats.

Dear Lord,

Let me remain patient and filled with lovingkindness as the holiday season commences with The Big O insisting on going up into the attic to get down the lights, first, Mom! Just the lights! I promise!

Let me remain patient and filled with lovingkindness instead of irritated when people invoke You in comments to me either here on the blog or on my Facebook page.

Let me remain patient and filled with lovingkindness when I map out my week, and it calls for 24 trips to the Valley and home because of my eldest child's chosen school and decision to go out for the track team.

Let me remain patient and filled with lovingkindness when I listen to the American Express Guy From India explain in his imitable accent that You are dear to the company, Miss Elizabeth, and we want to work with you during these difficult times.

Let me remain patient and filled with lovingkindness when I wake in the wee hours of the morn and am filled with the unique thoughts of the Hours Before Dawn, all of which include college costs, a lifetime of caregiving, SUDEP, the 24 trips to the Valley (see above) and existential loneliness.

Let me remain patient and filled with lovingkindness when people begin posting photos of their holiday trips to the Seychelle Islands, Hawaii or even just up the road at Mammoth.

Let me remain patient and filled with lovingkindness when I realize that I literally have nothing to wear should I be invited to a holiday party.

Let me remain patient and filled with lovingkindness when I hear Obama called a tyrant, even as the people who call him that remain free to do so, without getting their faces shot off.

Let me remain patient and filled with lovingkindness toward every member of my family, nuclear and extended, toward myself and toward our dog, Valentine.

Amen.

Landing on Comets

Today I learned that a space craft has landed on a comet for the first time. That's a photo of the event. Meanwhile back on earth, we got a sort of explanation, possibly, for Sophie's "drop foot" or increasingly strange gait pattern. Yesterday was the Quarterly Trip to the Neurologist, and despite Sophie's recent digestion troubles, she was in fine form, alert, smiling, seizure-free and fairly animated. The Neurologist was delighted and suggested that the prolonged use of the particular anti-epileptics have probably, over time, caused the problems. She informed me that both Vimpat and Onfi are troublesome, and she really, really wants us to continue to wean the Onfi. This can only spell improved efficacy with the cannabis, as most reports indicate those off of benzos in particular see the best results. She was delighted as well that the cannabis was helping her so much, remarked on how good she looked and agreed that more testing -- an EEG -- wasn't necessary. We made a plan to begin another wean this week and will keep it at that level for a month before moving to the next. I have written out on a piece of paper four months worth of weans (1 teensy tinesy bit, hopefully, a month) which is a start but not complete. The Neurologist told the grim story of one of her patients who got into too much trouble at the end and continues to take a tiny bit. She suggested that this might be the case for Sophie, too, given how long she's been on the drug and how much she's taken. Lovely. Maybe I'll get a chance to ride a comet in celebration of The Removal of the Benzo. The Neurologist also threw some alarming fact about bone marrow and one of the drugs into the conversation which I filed away to mull over later. Lovelier. I told her about the weird stepping motion Sophie makes and how I'd wondered whether she had Parkinson's or Multiple Sclerosis, two of the diseases that I saw on the internets that correlated with drop foot. I asked her this question in my best casual, yet rueful and ironic way (because -- really -- I wouldn't be entirely surprised to learn of some new catastrophe and when your child is nonverbal, who the hell knows ever what's going on? That spacecraft that landed on the Comet is called Rosetta, which makes me think of those language programs which then makes me think of how we can't figure out what someone like Sophie is thinking or feeling and wouldn't that be wonderful if there could be a Rosetta for the nonverbal?

Anyhoo.

The Neurologist, after observing Sophie walk believes it to be just plain old weakness, exacerbated by her constant crossing legs and a possible injury around the knee. She wrote me a prescription for physical therapy, so next on the agenda is perhaps a fracas with the insurance company over whether this is absolutely medically necessary (can't she just use the wheelchair? I imagine the agent asking over the telephone). Before I do that, though, I'll take her to the private physical therapist for a little assessment that will cost me about three trillion dollars and get some advice from her on where to go In the Healthnet Network for regular physical therapy. Remember you conservative and anti-Affordable Care Act freaks and repealers: You don't want no government coming between you and your doctor!

Anyhoo.


All in all, it was a good visit to the place of CONQUEST (see my post about irony, written years ago) -- surely not as spectacular as a spacecraft landing on a comet, but who am I to think our little problemos have a speck of significance in this grand universe?

The Perks of Blogging and Living in Hollywood ***

So, if you blog regularly you might get some pretty weird marketing emails in your inbox. Evidently, many people live off of their blogs or at least collect tidy sums from them. In the early days, I responded to a few and got some pretty beautiful Le Creuset pots and pans in the most amazing turquoise. That was worth reviewing weird products like sweat wipes for your adolescent and inserting links to barstool companies. I used to put ads on my blog, too, through the nightmarish mom's blog metropolis, but let's face it -- they're obnoxious and made me feel ashamed to participate in the grosser elements of our culture. Let's not even talk about the phrase mommy blogger. My blog is named after a line in a Yeats' poem, for goodness sake, and I slapped that name on it over six years ago because I didn't know what the hell I was doing. It couldn't be any more ponderous or even, arguably, pretentious, but c'est la vie for a moon, worn as if it had been a shell. I removed all ads from my blog a long time ago, and I just like it so much better. All me, all the time -- like Faye up there, after her big win. I sure didn't think that I'd attract some of the things I happen to attract now. Today, I received -- for the second time -- an appeal that I think you might enjoy.


My name is XXXXXX, and I am a producer for a major network here in Los Angeles.  I saw that you ran the popular Elizabeth Aquino blog and I wanted to see if you or any of your friends would like to be a part of our new TV series. Please see the verbiage below:

NOW CASTING:

Are you and your family terrified of going to the doctor?

Are you afraid of what you’ll uncover?

Are you hiding symptoms from each other… and even yourself?

A MAJOR BROADCAST NETWORK and TWOFOUR AMERICA are now casting families for a radical experiment! This new and exciting show will help change your life and uncover all the things that might be lurking under the surface … ultimately improving your health, happiness, and your life forever - not just for yourself, but for the whole family.

We are looking for families in the greater Los Angeles area who are ready to undergo this transformative experience and face their doctor fears once and for all.

Families of all shapes and sizes are welcome, but families must include children and/or teens.

Good lord, ya'll. Should I respond? Maybe I'll do so in another post.

Sincerely,

Elizabeth, of the popular Elizabeth Aquino blog

*** In case you don't understand this post or are visiting for the first time, think of the word irony.

What to do on the one day you have a caretaker other than your mother all day as she watches lacrosse in Manhattan Beach

Sleep, of course, and have no seizures or need to walk around outside or be otherwise distracted and entertained. Make sure that your saintly caretaker has nothing to do for the majority of the day but take adorable photos of you and send them to your mother while she sits in Manhattan Beach watching her teenager play lacrosse and fields her other teenager's incessant questions and requests for food.

The Death of Iron-y

I haven't had time to post today, but I've been thinking a lot. I've been thinking about those pipes up there, not clay but iron, corroded and caked with roots, inch by inch, foot by foot the men drag them out of the ground. I read an article today about irony, about the difference between it and sarcasm or snark. I love irony, think in irony, write it with roots, corroded. Sophie has languished the past few days, slept innumerable hours, waking only to eat. She is better today, more alert, and I continue to give her the syringe of CBD. I read the threads on Facebook about Charlotte's Web, about the old stuff and the new stuff, about interactions with other anti-epileptic drugs, about toxicity, the liver, something called p460. The voices on these threads are loud and dogged, and I'm not up to the task. What is wrong with me? I think. I am not up to the task. I don't feel like figuring it out. Take copious notes, a woman posts at the end of a long trail of earnest information, it takes a while to figure things out. I don't want to take notes or figure it out. I want it figured out. I am depleted, corroded. Another thread rants, again, about the pharmaceutical industry. Everything is bad, everything. Everyone is against us. The urgency makes me tired. I felt urgent about fifteen years ago. There was no use in it. Time kept ticking by. Am I tired because it's been nearly twenty years of this shit or am I tired because I am corroded, weak, my irony dead? The Buddhist in me refrains from the clinging, skates the fine line of release/letting go and surrender/defeat. When I threw out the baby development books back in the days before information lay at my fingertips, I heard doors and windows slam. Sophie became who she is, despite. She became who she was, anyway.

Ironic Thought of the Day, Part 87,435,679 in a series

Watching tens of thousands of seizures over nearly two decades, taking care of a child who never grows up but who suffers daily, and thinking every single day of her possible death is endured, for the most part, but it's changing the wet-through sheets again, that undoes me.

Headlines you don't want to miss (an extremely black humored post)

Vintage portrait of an Amazigh woman, immaculately dressed and adorned.

the following is dedicated to my fellow Parents from the Land of Epilepsy 

or other Disorders 

and all those who love me and whom I love

So, I'm wondering what to do about the following headlines that came through my email box this afternoon:

Leading Causes for Epilepsy in African Children & Adults

Preventing SUDEP

Next Week Do Not Miss:

• Valproic acid lowers IQ in kids to age 6
• Valproic acid is linked to decrease in brain volume

Just so you know, I haven't clicked on the top headline although I have an idea that it's about a strange bacteria or even a  kind of tapeworm. I  know this because about eight years ago, I spent a whole night and several hours of the morning -- the darkest hours before dawn -- Googling seizures, weight loss, fleas, dogs and tapeworms and discovered that there's a tapeworm that makes its way to the brain and causes seizures. Even though this generally happens in Latin America and Africa, I thought at the time that I had discovered something new, that Sophie had been bitten by or swallowed a flea from our new dog at the time, and that said flea had laid eggs, a tapeworm had grown and made its way to her brain and was causing severe weight loss and even more seizures than she had before. I was so convinced of this that when the sun rose, I called our pediatrician and insisted that we do a fecal test to which he happily complied (bless his doctor heart). When it came back negative, I think I only sighed and thought onward.*

The second headline is about SUDEP, or Sudden Unexplained Death in Epilepsy Patients, a sort of SIDS for the epileptic set. It's something to be terrified about and something that has finally, after eons, taken hold in this country as a topic to research and talk about. I've even heard it described as a hot topic in the same tone that some in the epilepsy community use when they lament the fact that autism gets far more publicity and dollars than epilepsy despite the fact that it affects far fewer people. I did not click on the SUDEP title, either, because I'm certain I already do all the things one can possibly do to prevent it outside of being born again and claiming Jesus as my savior. If someone has direct proof (through a double-blind study) that doing so prevents SUDEP, let me know because I'd be all over it.**

The third headline is so enticing, no? A sort of teaser, something tantalizing, held out of reach and done so in order to make the drudgery of our days pass more quickly. Valproic acid or Depakote, is an old-line drug for seizure disorders, and Sophie took it back in the dark ages -- the 1990s! -- when she was not even six months old. She took two forms of it for a few months and despite warnings of stomach ulcers, I am not sure we were aware of its effects on IQ nor the volume of her infant brain. Evidently there have been advancements. Good to know. But we have to wait until NEXT WEEK to read about it.***



So, that's it for today. Next time you read the paper or the headlines and grow insanely confused about what to eat and what not to eat, what will make you fat and what will make you thin or what will give you cancer and what won't, add the above facts to your getting addled brain. Then mull on them for the next few decades, feed a dog and plan a trip to the dark continent, drink a Diet Coke and eat a slice of pizza with extra cheese. Adorn yourself with African jewelry, knit a blanket of sorrows and smoke a shitload of cigarettes while lying on your back on the plain.

*For any of you seizure parents out there who might run to your computers and Google seizure inducing tapeworms, here's the link to the headline that I posted above. Don't tell me what the article says.

**To read more about SUDEP and perhaps check your list of how to prevent it, go here. Again, don't tell me what it says.

***Check back next week.