Wednesday, August 27, 2014

Birthday Number 51

My first birthday
August 27, 1964

Good lord. Evidently my love of cake began at an early age. Look how young my parents were, how adorable! That was fifty years ago!

I guess there was another party which meant more cake for me:

Doesn't Sophie sort of resemble my darling mother in that photo?

Oh, here I am eating cake on my sweet sixteenth birthday with one of my oldest friends, Audrey.  She lives in New York City but usually calls me a day or so after to wish me happy birthday. We've made a ritual out of that, and I would never want her to call me on the actual day. I'll pick up the phone and she'll say, Happy Birthday! and I'll say It was the 27th! and she'll say I thought it was the 29th! and then she'll tell me that the only reason I remember her birthday is because she was born on the exact day that my parents were married, which was in October of 1962, ten months and several weeks BEFORE I was born, my mother is quick to remind me. You know, just in case I thought less of her. In any case, this silly ritual has amused Audrey and me for decades.

Sometime this week I'll probably eat cake with my other oldest friend, Moye, and we'll laugh together and I'll realize how much I love her and am grateful for our long friendship. Later today, I'll eat cake with my children, open presents from my sisters and my parents, be grateful for a body that is strong and healthy, and a  life that is blessed with beautiful children, family and friends.

I hope to live another fifty years on this wonderful planet, particularly if I morph into my southern Italian peasant grandmother and live in Bora Bora in one of those huts over the cerulean sea.

Tuesday, August 26, 2014

A Whisky Sour and a Birthday Eve Dinner

Emily, Sylvia, Leah and I have been taking one another out for birthday lunches or dinner for over ten years, now, and tonight they took me to a fabulous new restaurant around the corner called Republique. I got there early and sipped an amazing whiskey sour that had whipped egg whites in it. I know that's standard and authentic, but I'd never had it and can I tell you that that was one outrageous drink? The rest of our meal was outstanding -- we ordered so many dishes that I couldn't begin to remember and do justice to them here. There were salads and sushi and soft shell crab and vegetables tempura and rich pasta carbonara and crusty bread with salted Normandy butter. We laughed and talked and caught up for several hours  and ate so much that we turned down dessert before rolling out and back home.

Thank you, ladies, for a beautiful evening!

How to Figure Out What's Wrong With Your Non-Verbal Child 233***

***This is an advanced class, designated 233 for the number of months said child has been non-verbal. If you have not advanced through How to Figure Out What's Wrong with Your Non-Verbal Child 1- 36, you may not find this class relevant to your life. You can read on for random stimulation but might find the contents upsetting or completely boring. In any case, the above photo is from the other day, during a brief respite from shallow, heaving breathing.

  1. Take note of extreme number of seizures on one particular day, but figure it's the lower ratio CBD oil or the moon.
  2. Wonder if the extreme number of seizures is actually a portent of an earthquake.
  3. Take note of earthquake happening in home state but dismiss as reason given how far away earthquake is from home city.
  4. Ponder why child is breathing shallow and hard, constantly.
  5. Ask oneself: Is she breathing like this because she is having an asthma attack? Place head on chest and try to discern wheezing. Is she breathing like this because she is now more alert and thinks it's fun? Tell her to stop it right now because the breathing thing is driving everyone insane. Is she breathing like this as a sort of seizure? Observe that after getting higher ratio CBD, the seizures actually stop yet the breathing continues. Notice that she's particularly alert and happy and is once again having no seizures. Is the breathing self-stimulating? Decide that there's no way to tell.
  6. Ponder why child is reluctant to drink anything. Force child to drink by dripping liquid into her mouth.
  7. Obsess about hydration and constipation.
  8. Start worrying about having to call The Doctor.
  9. Tell oneself that every time you take her to the doctor, it costs hundreds of dollars, and it's probably a virus. 
  10. Last night, during a coughing fit, observe the child to really be struggling to breathe and coughing up some pale yellowy mucous. Observe that she is very agitated and uncomfortable.
  11. Worry that she might have aspirated something or have pneumonia. Think about the interaction of CBD and Onfi and wonder if it's all going to kill her.
  12. Calm down when she calms down after you apply some Baby Vick's Lavender Vapo-Rub, but call the doctor anyway and make an appointment to take her in the morning.
  13. Take the child in to the doctor and try to answer all the pertinent questions despite not being able to really tell the doctor what, exactly, the child feels. Be reminded that the last time the child was on an antibiotic, she was less than three years old when speech was still a viable hope.
  14. Help hold the child down so that nurse can get a throat culture to check for strep. Nurse, doctor and you talk in calm and determined voices as you hold the child down on the floor and dodge her flailing legs and arms.
  15. Stand up with child, look her in the eyes and firmly tell her to calm down, everything is all right. 
  16. Cry a few tears when she throws her head into the tiny Buddha necklace that digs into your clavicle in just the right spot to cause obliterating momentary pain.
  17. Feel grateful for the physical pain that can mask the emotional pain of the whole freaking situation.
  18. Repeat above steps so that doctor can listen to lungs, heart and get a pulse oximeter reading.
  19. Try to explain to doctor what you think might be the problem, and because doctor is so wonderful and states that since she never sees Sophie because she's always so healthy, she agrees and orders an x-ray of her lungs to check for aspiration and/or pneumonia.
  20. Feel relieved and grateful that the quick strep test is negative but listen with sorrow to the doctor explain that her throat looks pus- y and that we shouldn't rule out strep until the culture is fully grown. 
  21. Feel extra sorrow because this is why she hasn't been drinking. Her throat is sore, and she's unable to tell you.
  22. Drive to x-ray place and curse oneself, silently, for not bringing the wheelchair. Apologize out loud to child who is sitting in back seat, less agitated but still breathing heavily.
  23. Fill out forms in x-ray office with one leg over child because she won't stay still and you can't tell her to do so.
  24. Go into the back of the office, don a lead apron and help the technician to hold the child while another technician operates the machine. 
  25. Keep talking to extremely agitated child who doesn't understand what's going on, other than that she's wearing a heavy lead skirt, is being asked to raise her arms and stand in one place without moving.
  26. Cry a bit inside.
  27. Feel grateful when technician is finished, they get clear x-rays and she helps you to dress Sophie.
  28. Feel tearful when the technician kneels down and puts Sophie's shoe on her foot.
  29. Feel momentarily irritated when technician says God only gives you what you can handle! like you've never heard that statement before and actually might welcome it, but realize just as quickly that she is a goddess of a technician and who cares what bullshit she says so kindly?
  30. Receive the news that the lungs are clear and feel nearly orgasmic with relief.
  31. Walk back to the car and feel nearly tearful with gratitude for the valet dude who helps you to put the child in the car.
  32. Drive home wondering if you'll figure out what the hell is wrong with child, knowing that she probably just has a virus.

Monday, August 25, 2014

Part 2 of Ray Bradbury's Inadvertent Writing Prompt

February, 2012

Here's the Raymond Chandler quote again, in case you missed it from the earlier post:

“You have to write the way you see things. I tell people, Make a list of ten things you hate and tear them down in a short story or poem. Make a list of ten things you love and celebrate them. When I wrote Fahrenheit 451 I hated book burners and I loved libraries. So there you are.” 
Ray Bradbury 

You sent me some great hate lists, and now it's time to list ten things you love. I think what comes after that is something that you create from both lists. In fact, let's have a contest. Send me what you "tear down" from your ten hates and what you "celebrate" what your ten loves -- a short story, a play, poetry, a prose poem --and I'll read it. Hell, if you can write a novel really quickly with this prompt, do that and send it to me! I'll pick out the one I like best, post it here and send you a copy of my friend Brittany's new novel Angel Food. I've been meaning to review her raucous book, unlike anything I've ever read with an almost old-fashioned sense of story and plot and characters, yet so twisted in sensibility that your head spins in the best way, making you feel at once invigorated and breathless with anticipation. Oh, and the characters become as real as anyone you've ever met but are at once completely surreal, both terrifying and irresistible. How's that for a mini-review? If you're not going to win the contest, you need to click on over to Amazon and buy it and read it for yourself. You'll thank me for telling you to do so.

Here are ten things I love:

  1. the moon
  2. the word and the color cerulean
  3. fat and tedious novels written about characters in the nineteenth century
  4. those three children in that old photo up there
  5. pizza, pasta and yellow cake with dark chocolate frosting
  6. California and its temperate weather with no humidity
  7.  men with wicked senses of humor
  8. Van Morrison's voice, especially when he sings "Astral Weeks"
  9. Yosemite Park
  10. a stack of books not yet read with a few slim books of favorite old poetry mixed in

Your turn --

A Writing Prompt and Playing Around with Tumblr

by Roz Chast-- a goddess
via The New Yorker

I've been playing around with Tumblr, inspired by my friend Vesuvius, and wanting a place that I could curate stuff that I like and am inspired by without resorting to Facebook or even Pinterest, which both give me agita. There's a simplicity to Tumblr, I think, and I love the way it looks. Here's my Tumblr address: a moon, worn as if it had been a shell. Check it out and let me know what you think. I have no idea of what I'm doing there, but I imagine I'll keep it simple and just post periodically.

I saw this on Paris Review's Tumblr today and thought it an excellent writing prompt:

“You have to write the way you see things. I tell people, Make a list of ten things you hate and tear them down in a short story or poem. Make a list of ten things you love and celebrate them. When I wrote Fahrenheit 451 I hated book burners and I loved libraries. So there you are.” 
Ray Bradbury 

So what are ten things you hate? I'll start, and tomorrow we'll do ten things I love:

  1. Designer labels on children's clothes
  2. Evangelical/Fundamentalist Christianity
  3. Violent television and movies
  4. When people cut down trees
  5. Peas
  6. Electronic music
  7. Sexism
  8. Being called "Mommy" or "Mom" by people in the medical profession
  9. Hashtags
  10. Aggressive BMW drivers

Sunday, August 24, 2014

Beach Glory

It was, indeed, another day in Paradise. Henry had a four-hour lacrosse camp, so Oliver, his friend Mac, Sophie and I packed up my sexy Mazda (not the red one below that I covet) and headed to the beach, just down the road from the high school where the lacrosse camp was held.

Reader, can you imagine growing up here? Sometimes I just can't believe that my children can say that they have, that they're actually from this beautiful place.

Sophie was in fine form all day, quite different from how she's been over the last couple of months. We were able to get a higher ratio Charlotte's Web, and while I don't want to jinx it, I think it's doing the trick. She did break out into raucous laughter a few times today which I suspect were a type seizure called gelastic, but she seemed very present, and her face didn't have that rictus grin of the gelastic seizure, so perhaps she actually found something very funny.

Who the heck knows?

Looking north toward Malibu:

The waves were easily six feet tall at points, and the riptides were evidently dangerous as those dreamy
red-shorted southern California beach guards were on alert the whole time. Oliver and Mac literally played for hours in the water while Sophie and I wandered up and down at the edge.

I hope your weekend was as glorious as mine. School will be in full swing starting tomorrow, and I have lots of work to do -- both paid and the usual hausfrau stuff. I want to finish the Anthony Doerr novel that I've been reading and finish up listening to the Elizabeth Gilbert one. I've also got several New Yorkers to catch up on and a host of blogs. All of it makes me happy.

A good friend sent me the following link about trolls and angry internet comments. I found it perfectly relevant to the kerfuffle here at a moon, worn as if it had been a shell. It's an interesting discussion about how communication is evolving with technology and is worthy of even more discussion.

Furious trolls are everywhere -- Even Internet Moms are angry and they hate you

Sparing the Rod, Not Spoiling the Child, Getting Rich***

We have a dog and her name is Valentine. She was named Valentine after the patron saint of epilepsy, and she was supposed to be a therapy dog for Sophie but is now just a regular old family dog. She is a Standard Poodle and is as goofy and chirpy and bouncy in this, her eleventh year, as she was when we got her at seven months. Feeding her daily and giving her fresh water is the responsibility of The Brothers, and years ago when they were still Young Lads, when they bickered too much about who had done it yesterday, etc., I instituted a system of odd and even days. Since Oliver was born on an even day and Henry an odd one, it works out beautifully (except, of course, for the occasional months with 31 days), and you'd think that would be all taken care of, right?


The Brothers, no longer Young Lads, don't feed the dog unless I remind them, and this is really getting on my nerves. That photo was taken when I realized that the dog dishes were dry and empty at 10:00 at night, so out of pity and responsibility for this creature in our home, I fed her and then spared the rod but didn't spoil the child.

The new rule is this:

Every day that goes by that I have to either remind you to feed Valentine on your day or you forget, I get $1. I will collect this money at the end of each week. We're starting today. You each owe me $1.

***The getting rich part involves another rule whereby I collect $5 if I hear a curse word (other than if one is seriously injured with blood spurting or bones sticking through clothing or one is talking to an insurance company clerk) or see any rude hand and finger gestures (other than those directed in service to #don'tstarepaparazzi). We part time working, stay at home mothers and caregivers have creative ways to make money while we polish our toenails and eat bonbons on pink linen sheets.

Saturday, August 23, 2014

Silenced Women, Books and Poetry

via The New York Times

I've been listening to Elizabeth Gilbert's novel The Signature of All Things on the recommendation of our dear Mary. To be honest, I was not a big fan of Eat, Pray, Love but have always admired Gilbert's writing and speaking, her take on life and her gentle demeanor (I saw her once, live, with Annie LaMott). Her new book is read by Juliet Stevenson, the great English actress, and perhaps part of the love affair I'm having with the story and the writing is due to Stevenson's exquisite interpretation. I think, though, that the book is just plain interesting and beautifully written. I generally take forever to listen to an audible version of a book -- I have a hard time staying with the story and don't think my ears are as connected to literature as my eyes, if that makes sense. In any case, though, I'm getting toward the end, unable to listen to it in my car because of some lurid details that I don't want the boys to hear, and I might even lie on my bed and finish it up -- just lie there and stare at the ceiling with earplugs in my ear. 

I'm struck, over the last few days, as I immerse myself in listening to this story of a late eighteenth, early nineteenth century woman by just how constrained women's lives were for most of written history. The constraints were so pervasive and affected every aspect of their lives, including sexuality -- maybe especially sexuality -- until very recently. And then I think about how women are shamed and silenced even today, sometimes spectacularly but more usually, silently and subtly -- even by themselves. I can honestly say that I've felt stifled over the last couple of days, perhaps over-aware of my opinions, my outspoken-ness, my sharp tongue. I wonder if men feel this way regularly, whether they feel the need to second-guess their intentions, apologize for the way they deliver their thoughts or feel "less than" because of them.

Although I can't begin to fully understand it, I think Emily Dickinson was hinting at these things -- at anger and constraint -- when she wrote this poem.

Here's the poem for your eyes:

My Life had stood - a Loaded Gun -
In Corners - till a Day
The Owner passed - identified -
And carried Me away -

And now We roam in Sovereign Woods -
And now We hunt the Doe -
And every time I speak for Him -
The Mountains straight reply -

And do I smile, such cordial light
Upon the Valley glow -
It is as a Vesuvian face
Had let its pleasure through -

And when at Night - Our good Day done -
I guard My Master's Head -
'Tis better than the Eider-Duck's
Deep Pillow - to have shared -

To foe of His - I'm deadly foe -
None stir the second time -
On whom I lay a Yellow Eye -
Or an emphatic Thumb -

Though I than He - may longer live
He longer must - than I -
For I have but the power to kill,
Without--the power to die--

And here's the poem, read by Juliet Stevenson (!) for your ears:

Emily Dickinson - My Life Had Stood A Loaded Gun by poetictouch

Seahorse Days of August

August 2010

I can sit in the cheap garden chair, coffee in a yellow cup on the arm and the small fountain that Oliver built gurgling beside me, reading. I hear the yips of the neighbor's dog, lift my head to wonder from where the constant hum of a chain-saw comes, notice my irritation and notice it drift away.

If we wish to live well in the world, not just amble along through life without any examination of our being, then we must engage in the effort to find meaning in our lives. In order to do this, we have to find a way to balance our own interiority with an empathic recognition of others. Without this balance, we can become invested in our needs and performance while forgetting that there are others in the animal, vegetable, and mineral world. Or we can become so outwardly directed, perhaps even to the point of interfering, as to fail to see our own shortcomings. We must ask: for whom do we practice? We see the paradox of self in the world, focusing inwardly in order to manifest outwardly. The inward look is the outward view. Ultimately we practice for others as our inward polishing manifests itself as good action in our activities.

-from Following the Way of Ryokan in the Fall 2014 issue of Tricycle Magazine

There is goodness and gratitude everywhere. Yesterday, as I made my way through the day, caring for my children and worrying about Sophie, I thought much, probably too much, about the criticism thrown at me. I tried to give it space, to open myself up not to the words, the venom in the words,  but to my own reaction to the words. That takes away the sting in the same way that breathing through physical pain lessens its impact, if not the pain itself. Does that make sense? Last night, this post, one that I wrote in response to overwhelming generosity afforded me in the midst of that person's horrific pain, appeared on my Facebook feed. I will take this as a sign of grace and am stunned, again, by the wonder of the world and this community.

Friday, August 22, 2014

Simmah Down!

My brother-in-law, a native Tennessean, used to shush his young sons up with a very loud, goodnatured, Simmah DOWN!, and that's what I think I'm going to have to say right here on the old blog.


I'm including myself in that admonition, too. I'm going to lay to rest the posts that provoked so much personal attack, even as the anonymous commenter told us her name in "self-defense." Thank you, Elise. I don't want to disable anonymous posts because I agree with another anonymous poster that privacy can be an issue, and I want to respect that. I also don't want to discourage people who disagree with me, and there have been many such back and forths over the years that are stimulating and interesting. I believe Elise has missed those and dwells, probably, on those that discuss G.W. Bush's nasty smile. I hope the back and forth continues and don't want to discourage it by disabling the anonymous function. I think where I draw the line is when someone directs comments at me, my husband or one of my children, because let's face it -- that sort of thing is creepy.

This is, after all, a blog. 

As for Facebook, I've removed the Networked Blogs thingamajig, but I love seeing what my old friends are up to, enjoy the various interesting articles and humor stuff that is posted, and most importantly have a pretty incredible community of fellow epilepsy families that I just can't be connected to anywhere else.

So, onward.

What are ya'll doing today?

Thursday, August 21, 2014


It's deeply repellent to me to have gotten a couple of nasty anonymous comments when I tried to express my vague feelings of conflict regarding the ALS ice-bucket challenge, and I am close enough to the disease to not want to become ever more embroiled, so I'm going to delete the posts and exit from Facebook as well. It's also repellent that the posts have driven an enormous amount of traffic to my blog -- way more than usual -- and I don't want to be a part of that, either. In fact, I'm no longer going to have that weird Networked Blogs thing post my blog to Facebook -- if people want to find me, they will, and if I have a message regarding something related to disability, epilepsy or medical marijuana I can easily link it myself. I wish I could delete my entire Facebook account, but there's so much good going on there in the medical marijuana community that I hate to do it. I'm thinking that maybe I should just make it dormant or something for a while? Does anyone know how to do that?

In the meantime, have I told you how much I dislike cats?

Dear Anonymous,***

Ouch. I guess I had it coming to me. I've never been one to mince words, as you know, and I'll acknowledge that I do a fair amount of complaining. I have much for which to be grateful, though, far more than I have to complain about, and I'm sure I could do a better job of writing about the good things, the things for which I'm grateful, those things that have been afforded to me by family, by friends, by strangers, by grace. Thank you for the reminder, however harsh your words.

Character assassination and your anonymity aside, thank you, too, for reminding me that Sophie is still alive. As long as she is, and most definitely even after she is not, I will continue to complain about, fight against and try to illuminate the very real problems and suffering that those of us on the front-lines of epilepsy and other diseases face daily. There is no martyrdom in suffering silently when problems can be faced, tackled and solved, and if my voice is a tad louder and at best, more articulate, than others, I feel grateful to serve in that way. 

I'm not sure why you're so angry, and I appreciate anger except when it's used to attack people personally. I figure that's why you've chosen to remain Anonymous. If you have it in you, I urge you to read some of the comments on the previous post -- they are both in agreement and dissent with my own, from parents, writers, doctors and even the "normal" people that you claim I disdain. For the record, I don't believe that there is such a thing as a "normal" life, but I acknowledge my sharp tongue and ready condescension for certain points of view. 

All the best to you,


***Anonymous' comment on my last post felt like getting smacked right on top of the head with a two-by-four. I think when things bother us, we need to look within and acknowledge why, wonder and acknowledge any truth to their comments, think about it, and then move on. I hope I can move on.

On Being a Pariah On Facebook and the Ice-Bucket Challenge

At this point, if you don't know about the ice-bucket challenge that is circulating on social media, you are either living under the proverbial rock or you're just very, very lucky. I was "challenged" quite early on and declined to dump the water over my head, not because I'm afraid to get cold or because I'm a hater or a spoiler, but because there was something about the whole thing that got on my nerves. I wondered if it was my own ego getting in the way of having fun along with millions of other people, many of them my own friends and family, including my sons. I wondered if it was jealousy, because I've been trying to raise money and awareness for epilepsy causes for the last two decades and, most recently, for medical marijuana. I figured it might have to do with my general dislike and growing mistrust of the non-profit world, its ties to pharmaceutical companies, the vast amounts of money being exchanged with ever dwindling amounts directed toward real research and cure. I wondered if it was just my own crotchety contrariness. Maybe it was all of those things or none of them, just that weird instinctual feeling that I am hard-pressed to articulate.

In any case, I watched a few of the videos, pretended to enjoy a few more and then quit clicking. Then I read this, posted by a friend, a survivor of breast cancer and, evidently, a fellow ice-bucket challenge pariah. It's a statement by the Breast Cancer Action Group who has also admirably argued against the whole pink ribbon campaign, arguing that the vast marketing machine that these "campaigns" fuel works against research and cure.

We are approaching illness and healthcare assbackwards if we continue to determine which diseases get critical research and support dollars based on the appeal and fun factor of their fundraising campaigns! This is a mad way to confront illness and disease. In this new world of philanthropy by popularity contest, the future looks very scary. Only diseases lucky enough to be the beneficiary of a viral, “fun” campaign will capture public attention and funding. Savvy marketing, motivated self-starters, random acts of kindness will determine who gives a toss about people dying and the disease or illness they are dying from.This haphazard approach to healthcare and research funding isn’t the solution. No single life-threatening illness is more deserving than another. But all this wonderful generosity from a caring public willing to embrace the cause of the day serves as another nail in the coffin of a different kind of solution to illness, disease and ill-health—a solution that requires government funds, public money not private giving, that ensures people everywhere are able to access quality healthcare; that makes decisions about the allocation of research dollars based not on cyclical fads or randomly successful, social media campaigns but on evidence-based needs and outcomes.The #IceBucketChallenge is well-intentioned and has raised a lot of money for the ALS Association. But this disease-by-disease popularity contest approach to funding research is not a sustainable way to confront illness and disease and pushes responsibility for public health onto the private sector. This takes us in the wrong direction. We all deserve better.

Thank you, Yvonne, for turning me on to this, for helping me to figure out just why I couldn't do the "challenge" and for educating me about breast cancer and efforts to treat and cure it.

You know, some people are going to read this and think, at best, that I am a Debbie Downer and very short-sighted. At worst, they'll think I'm arrogant and just putting people down that choose to do the challenge. Even my sons gave me a hard time. But that's ok. I get it -- I get both points of view.

For the record, I made a donation to ALS, a horrific disease that has claimed the lives of several people I know and love. I sure hope they figure out how to cure it soon, and I hope we as a culture and a country can move toward more communal values -- maybe more lasting and comprehensive than filming ourselves dumping ice-water over our heads or buying pink Kitchen-Aid mixers.

Wednesday, August 20, 2014

Wink, #2

We shelter in ourselves an angel
whom we constantly shock.

Jean Cocteau

Those who restrain desire do so
because theirs is weak enough
to be restrained.

William Blake

At the doughnut shop, I waited in line to buy a sesame bagel, toasted, with cream cheese, bacon and tomato.

A woman in an arm brace, the kind used for carpal tunnel syndrome, sat at a small table with an autistic man. He ate a powdered donut with jelly oozing out, and she played with three figs on a napkin.

The young man in front of me had a tattoo on his arm that read I Do The Wrong Things For The Right Reasons.

I might begin a How We Do It post with these lines that I heard Lorrie Moore say that night I went to hear her read:

How can it be described? How can any of it be described?
The trip and the story of the trip are always two different things.


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