#6 Maybe and a Bit of Civil Disobedience

I realized only now that I didn't reassure all of you who so kindly commented on my last post about Sophie not being able or wanting to bear weight on her right leg. She went to bed last night with "the issue," but when she woke up this morning, it was not "an issue." I commented on my Facebook post in response to that, but I didn't do so here. Basically, I think we can say that the #6 Maybe from my previous post wins out this time. I emphasize this time because the initial post -- however perceived -- was meant to express the oft-maddening aspects of longtime caregiving, particularly when the person you're caring for is non-verbal or completely dependent on you. In any case, rest well. At least right now, in this moment, Sophie is walking around like normal. Who the hell knows why this has happened a couple of times? A friend asked me what the neurologist would say. I told her that The Neurologist would probably shrug her shoulders and not know. I believe I've said enough times that equal to the anguish and sorrow of learning Sophie's diagnosis and then witnessing her refractory seizures -- and I mean equal -- is the lesson learned that physicians and The Powers That Be do not know everything or even, sometimes, anything. There are moments when only brutal humor sustains me (and no, prayers do not sustain me -- neither mine nor yours, although I do appreciate the thought!) and last night was one of those times. Hence my flippant list.

Behind all humor is sadness, said Mark Twain, and that adage is so very true for me most of the time. There's also anger and frustration and weariness.

Oh.

Sometimes behind humor is just plain humor. In the picture above, Oliver is shouting through his new megaphone. He spent the weekend down in Orange County with dear friends, one of whom is a sucker for all things Oliver wants and therefore bought him this real, battery-operated megaphone. Good Lord, ya'll. That thing is loud. This morning, Oliver shouted a stream of invectives (no curse words) toward the construction workers and contractors working behind our house at building another McMansion. I have to admit that it was really funny with no sadness behind it, and I felt sort of proud to be raising a hell-raiser in addition to a teenager who is besotted with his used car and a near twenty year old that so resiliently deals with seizures, drug withdrawal and weird right legs that won't obey her.

Saturday Morning West Coast Re-Post

I stumbled upon this blog post from a few years ago, and while the circumstances are different today (and largely unbloggable,) the post spoke to me:

Thursday, April 9, 2009

Trapeze Artistry and Humor

I think it was Mark Twain who said that behind all humor is sorrow.

I believe that.

I have a good sense of humor, actually, a superb sense of humor. An old boyfriend once told me that I was the person for whom humorists wrote. I liked that comment, felt flattered by it. I guess that means that I appreciate a good humorous anything, although I admit to wanting it tinged with a bit of intelligence (I do hate those gross-out movies and slapstick was never much for me). I giggle like a girl at a couple of my friends' incessant silly jokes (they both write for television), and I don't think sorrow is behind their humor.

My sense of humor can be as dark as it gets and is often the only thing that sustains me. I would add faith in there as well, but I think it's more a faith that God provides something for me to laugh at or see the absurdity of, just when I need it.

I laugh, therefore I am.

That was a riff, I think, on Descartes, but it's Pascal that I really love. I studied Pascal as an undergraduate when I worked on an arduous double degree in English and French literature. I despised French, except for some medieval stuff and, particularly, Pascal.

If I saw no signs of a divinity, I would fix myself in denial. If I saw everywhere the marks of a Creator, I would repose peacefully in faith. But seeing too much to deny Him, and too little to assure me, I am in a pitiful state, and I would wish a hundred times that if a God sustains nature it would reveal Him without ambiguity.
pensee no. 229

And what is all this about? I watched Sophie have what seemed like hundreds of seizures today -- the small ones, the big ones, the drooling kinds, the physical jerking. Etc. I heard the voice of my Chinese doctor in my head along with all the mindfulness training advice and I tried, I really did, to remain calm and mindful, to go with the flow, to not be "attached" in that desperate sort of way. I can do these things, often in a powerful way, but I'm also aware of the thin, thin rope upon which I walk and sometimes hang like a trapeze artist, the rope that threatens to buckle then come loose, then probably snap if I let

it


it only takes one


misstep


and then



that's it.


I'm a wreck, instead of a balancing act.

Humor is peeled back and only sorrow shows.

Trapeze artists are in the circus, after all.

We're a weird bunch.

Humor is tragedy plus time.

Mark Twain

My friend Erika and I were talking on the phone last night, and I was sharing with her my recent visit to The Neurologist. Erika has a child with a seizure disorder as well, and even though her daughter is many years younger than my Sophie, Erika's sense of humor is sharp, achingly so, and she jumps right into the Roman gladiator pit with me.

As you might have surmised, Sophie's honeymoon from daily seizures is now officially over. The drug Vimpat has ceased working as well as it was, and now we're on the tiresome wheel of deciding what to do next. We don't really have any options that jump out at one, unless you think another ketogenic diet trial is worth it.  The second and last time we tried the keto diet was about a decade ago (the first time was in the early days -- the mid-90s, when not many people even knew about it), and while it helped Sophie a bit as far as seizure control, it also turned her into a caged tiger, ravenously, desperately hungry with impacted poop (I'm not mincing words). It traumatized me so deeply that I look on that time as being equal to the trauma of her diagnosis and the early days of high dose steroids. That the connection between mothers, children and food is a deeply primitive one is not lost on me, but acknowledging it does nothing to dull the pain of that time.

A second choice is a revisiting of the drug Vigabatrin (or Sabril, as it's also known)-- one of the "newer" approved drugs and one that we tried, also, back in the mid-90s when we ordered it from England. I've waxed philosophical about Vigabatrin in a chapter in my yet-unfinished book -- the chapter was then published on epilepsy.com's website.  The drug wasn't approved for many years in this country because of some very serious side effects involving the retinas of the eyes. It's now approved and used as a front line drug to control infantile spasms, the terrible epileptic syndrome that Sophie was diagnosed with -- a form of epilepsy that continues to stymie the best minds. In fact, very little progress has been made for babies and children with infantile spasms in the sixteen years that we've been part of that club. In order to go on the drug now, one is subjected to a strict protocol -- eye exam baselines and the signing and initialing of pages of caveats and warnings and information. This is what I did at The Neurologist appointment yesterday, and as I told Erika, I found it bizarre and not a little hilarious that I was able to casually check the little box and print my initials, EA, next  to sentences like: I understand that about 1 in 3 infants taking Sabril will have damage to their vision. I understand that if any vision loss occurs, it will not improve even if my infant stops taking Sabril. 

I loved Erika when she burst out laughing when I told her about initialing this sentence: I understand that there is no way to tell if my infant will develop vision loss.

Unless you get it, you're probably not laughing, but we were and I think if we were two women in vaudeville we might have been slapping our knees in hilarity, knocking each other over with the force of the absurdity.

What really set us to being utterly cracked was my description of our other "option" for control of seizures: the vagal nerve stimulator or VNS. You can google and read about it online, if you'd like to know more. It's been around for quite some time and really doesn't have a fabulous efficacy rate -- the rule of thirds, much like drugs (one third improve, one third stay the same, one third get worse or go off). In any case, here's a scan of the box that had the informational DVD and brochure. 

In describing the packaging, I wondered aloud to Erika about the work that went into that marketing and how hard a group worked on  just the right words, the right picture, how much to suggest, how to harness hope and propel people toward treatment. I wondered aloud to Erika whether the two women frolicking on the beach might be our daughters one day or maybe even the two of us, looking beyond. 

We just laughed and laughed and laughed.

Sanity and happiness are an impossible combination.

Mark Twain