It's Not Who She Is

That's a spooky picture, isn't it? Sophie's the white-capped one in the background, lying in her bed. She was wired up today with an ambulatory EEG -- no reason in particular, although I'm interested in seeing whether she's had a return of the dreaded ESES. I think I wrote about ESES on this little blog back in the day -- Sophie had it when she was ten years old and again when she was fifteen. Yet, even as I type it out, I'm doubting that she's had a recurrence. It's not in my gut.

So, ye olde EEG. I remember when the EEG was ink on paper, the electrodes were glued on with an electric gun thing that made a horrible noise, and you needed the same gun and a foul-smelling ointment to get them off. The tech would fiddle with the dials as the ink jets clicked across the paper. It's all a blur, those early days -- a blur into darkness. They still use glue and colored wires that map the brain and record its activity (or fuckery, in Sophie's case) in a little box that you can sling over your shoulder. It's called an ambulatory EEG.

EEG is short for electroencephalogram, in case you're an initiate into The Great Mystery of the Brain. The EEG records brain activity in a moment of time, and in this case will record those moments of time overnight. If one occurs, it will "capture" a seizure.  It also shows the “background,” the non-epileptiform activity or changes, the slowing and spiking of brain waves. Whether Sophie has had a bazillion or no seizures clinically (to the eye), her background has always been abnormal. That’s it. 

Despite the technology, it’s not a complete picture of Sophie’s brain. 

It’s not who she is. 

Every now and then I get a feeling of what it feels like to be accepting. The other night I got Sophie out of her bed where she'd been lying most of the day having had some seizures. I fed her some mashed pinto beans and avocado, and her mouth worked eagerly to chew and swallow it. These are small things, true, but I knew what it was to count them as something less than momentous and more like flow.

Anatomy of an EEG

Sophie fought from the very first moment. I can't count the number of EEGs that we've put her through, but this might top them all as the worst or the one that she fought the most. Maybe it's because she's on fewer drugs and has more wherewithal to protest. Maybe it's because she's even more sick of it all than I.

Reinforcements were brought in. This is Rosie, The Reinforcer. She put her arms in braces so she couldn't flail or hit us with them. I would have cried, but instead I made dark and bitter jokes and alternated with murmured words of comfort to Sophie even as I pressed my fingers into her tiny hands and lay my legs across her lap.

They got the job done with my help and an extraordinary effort by Oliver. If I even began to tell you how much Oliver helped us, I might dissolve into a puddle of tears.

I hesitated to put these photos up -- even on Facebook, which I did last night. Then I decided that it'll only increase awareness for how miserable this disease is for not just Sophie, but for all the kids and adults like her, for their siblings and for their parents. My fellow epilepsy peeps -- I'm not sure how we do it, but we do it.

I am perhaps going to exist forever on the samsara wheel that is epilepsy because I hate it with all my heart. I hate all of this shit. Resistance comes and goes, and yesterday, it came.

Oliver asked what we were going to do with the information gathered by the EEG.

I said, Nothing.

A friend texted me this question:

I swear there have been no advances in the technology of neurology in forever. why the fuck do they not have a better way to do this yet?

I don't have an answer for that, and Spock died last week at the age of 83.

Sometimes, if I'm lucky, despair morphs into anger and then humor. Last night, I lay on my side in front of the video EEG monitor and noticed that Sophie looked like a saint, and unlike all other cameras, it actually made me look thin and even exotic.

Not to mention, terrifying.

An Homage to Roseanne Roseannadanna

I have many copies of the above document, sent to me by either Healthnet, our private insurance company or Medi-Cal, our secondary insurance company. The other day, I think I mentioned that I got fourteen separate denials for the various components of Sophie's ordered wheelchair, each component getting its own denial which was two pages and then a third page letting me know that whatever information was in the first two was available in any one of the above languages.

Foot Pedal -- denied
Back Pad -- denied
Head Rest -- denied
Seat -- denied

And so on. Fourteen components.

Each three-page document had its very own envelope and stamp, of course, was pushed through the slot on my porch door by our mailman and lay scattered at my feet when I pushed the door open. As you can see, if I have difficulty reading the English language, the law of the land provides for me in Spanish, Chinese, Vietnamese, Korean, Tagalog, Armenian, Russian, Japanese, Farsi, Punjabi, Khmer, Arabic, Hmong and Laotian. I have no problem with the diversity of languages offered and actually believe it's one of the best and most extraordinary things about living in these United States and particularly Los Angeles which is arguably one of the most diverse cities in the world. I am decidedly not one of those people that freaks out over people not learning English well, something that seems to unsettle a certain type person no matter their political persuasion. I'm not naming names, but they're related to me in blood and marriage.  What I do object to is the use of paper and the cost of paper and the aggravating and stubborn inability of private and public behemoths to figure out a way to provide our explanation of benefits and denials and exciting news of  premium increases in our language of choice to begin with as opposed to every single damn time they send something. If I were a therapist, I might offer myself a gentle hand and nod and think this is clearly not about the excessive amounts of paper but perhaps more about the early trauma exacted on this woman so many years ago. But I'm not a therapist. I'm a writer and a mother and a human being exquisitely sensitive to the absurd. You know what? I got a notice yesterday from The Insurance Company, denying the amount charged for Henry's well child check-up and vaccine (yes, I know, he got his first vaccine and I don't think you heard a peep from me!) on the basis that there was not a proper diagnostic code on it. When I called and pointed out that there is indeed a diagnostic code for well child/preventive care, the Bartleby argued for a minute or so, I produced the copied document and pointed it out, and he said, why you're right, our mistake, and while I sighed, I also thought about my old friend at L'Espinasse, the uber-fancy restaurant where I started my culinary career in my other life, how he'd send someone into the walk-in for something that they inevitably couldn't find, so he'd exasperatedly go in there and pluck the item right from the shelf and yell in his Cajun voice, WHAT'S THIS? A PORK CHOP? I really wish I'd yelled that at the insurance company guy when he argued for a bit with me and then realized his mistake. Instead, I stripped naked, grabbed the bottle of vodka from the freezer and ran around the neighborhood to calm down. I still have to hunt down our neurologist to get her to provide yet another piece of paper attesting to Sophie's need for an EEG so that the insurance company can cover at least a bit more than it will right now. And if I told you that I push SEND for our gigantic ass premium even five minutes past the due date, I swear there's an envelope in the mail the next day stating my rights should I not honor the grace period offered to me, how my insurance will be cancelled and thanks for doing business with us -- followed by the notice in all the different languages known to Angelenos in the tenth month of the fourteenth year of the third millenium on Planet Earth.

As Roseanne Roseannadanna said, It just goes to show you, it's always something -- if it a'int one thing, it's another. Or better yet, I thought I was going to die!

The House That Jack Built, Part Two***

illustration by Collette J Ellis

This one is a prose poem, sent to me by the clerk from the company who took the paper from the doctor who ordered the EEG for the girl whose brain loves to seize. I told her last week that the company needs another paper from the company who took the paper from the doctor who ordered the EEG for the girl whose brain loves to seize.

Elizabeth Aquino

I called the phone# you gave me and after a 30 minute wait I spoke with Brandi.  She said I needed to speak with the group and told me to call 800-522-0088.   The interactive voice system told me there was a 49 minute wait!    I will try again in the morning when they first open to see if I can get through then.

Thank you for your attention to this matter.  

Please notice that this is all completely out of the doctor's hands, the doctor who ordered the EEG for the girl whose brain loves to seize, a situation which underscores how utterly laughable the conservative's complaint is that "I don't want no government coming between me and my doctor." Because we all know how efficient the private insurance system is -- efficient to an extreme when it comes to collecting your monthly premium and cancelling your coverage if you're late, but otherwise -- well -- that's another story altogethe, perhaps more in keeping with Grimm or even the Marquis de Sade. I've also got to keep you updated on the convoluted Case of the Missing Wheelchair, the latest Nancy Drew installment. Stay tuned.




***Part One is here, in case you missed it.

DIY EEG

Alley behind Trader Joe's, La Brea

After delivering the lecture to end all lectures about everything I do for you, realizing all the while that when it's over 100 degrees outside, we're all a little irritable and therefore maybe I should just shut up, I ran out of the house and into my sexy Mazda and made a run to Trader Joe's where I bought what they all godd**n needed, and when I was paying, the cashier picked up the dark chocolate bar with hazelnuts and suggested that next time I make a cup of coffee, I should drop in a square of that chocolate and stir it around. Do it yourself, Mocha! he winked and he smiled and I smiled and then I took the alley way home and snapped that photo of a seemingly abandoned wheelchair facing what looked to be an artfully decorated junkyard. For a split heatstroke second I considered lifting it into the back of my car and bringing it home. Velcro straps, I thought, maybe a good cleaning? and then I came to my senses and pulled over only to take a photo, noticed the elephant roaring behind it all, thought about elephants in the middle of rooms, the unbloggable, long memories. Earlier today I was talking to my friend Jenny who asked how the EEG went last week, and I told her that due to the usual clusterfuck of insurance issues, we had to put it off. I was supposed to call the insurance company yesterday and request that they make it an exception and put the provider in-network. I was supposed to call the nice person who read my blog the other day when I talked about this, who happens to work for an EEG company and perhaps could help me. I was supposed to do both those things, but I let Monday pass, given the heat because I just couldn't do it, didn't have the patience or strength.and I let today pass given the heat because I just couldn't do it, didn't have the patience or strength, so I told my friend Jenny that perhaps I should do the EEG myself!  I screamed, A DIY EEG! and we continued to laugh. So, there's plenty of laughter, albeit the heatstroke kind, delirium from being too hot, but not the right kind of hot, elephants in the middle of rooms, wheelchairs in alleys and do-it-yourself EEGs.

How We Do It: Part XLVIII

It gets better.

Me

Sophie was scheduled for an ambulatory EEG this afternoon at 3:00. It's been on the books for about a month, but I haven't been thinking about it because I hate the whole process. The ambulatory part is a godsend -- no hospital! -- but there are all the leads, the stinking glue, Sophie's curly, curly hair, the clean-up, the smell and, of course, the significance. Sophie has always had an abysmal EEG -- the kind of EEG that is, frankly, pretty hopeless. She's probably had at least ten in the last nineteen years, most of them in-hospital. Every single one is wildly abnormal. I won't give you the jargon. She hasn't had one in three years, though, and we thought it was time, particularly given the dramatic reduction in her clinical seizures since we started giving her cannabis oil. Yesterday afternoon the lab called to say that the insurance company claimed Sophie wasn't a member, so I went into my clipped and efficient mode and got that ironed out (our id number was transcribed wrong). This morning, I got a call from the EEG lab with the news that they are Out-of-Network for HealthNet and that we would be subject to the 50/50 rule after the insurance company pays the usual and customary rate. How much is that?, I asked. The financial person told me that, historically, insurance companies have determined the cost to be around $120, so I would be reimbursed for 1/2 that or $60. How much is the EEG? I asked. She said, Around $1700 or so. There is no other ambulatory EEG facility in the area, and MediCal is not contracted with them either. My options at this point are to admit Sophie to the hospital for an overnight EEG (out of the question), pony up and pay (the usual choice that has strained our finances for nearly twenty years), or appeal to HealthNet and request that they pay the in-network rate (throw my head back and laugh maniacally). Reader, if you're still here, please scroll up to the video that I posted at the top and forward to :23 seconds, maybe one of my favorite scenes in the movie, when Benjamin tells his parents that he's getting married, and Mrs. Braddock throws her head back and screams the most fantastic laugh you'll ever see on film. I am Mrs. Braddock, and that's what I do in my mind whenever I have situations like this EEG one. I no longer feel stressed, to tell you the truth. What might have caused me to weep copious tears, to tear at my hair, literally, to feel the poison of anger and adrenaline coursing through my veins, has disappeared. Mrs. Braddock enters my mind, and I throw back my head and let out a screaming laugh. After nineteen years, I'm here to tell you that it gets better. That's how I do it.

Sunset in the Hood and Overnight EEG