How We Do It: Part XLIV

When a doctor tells you you have silent migraines, it's like asking someone on the street which way to the station and they say, I think it's that way, and point toward an urban horizon. But they're not sure. My policy is to never follow directions from someone who isn't sure. Keep asking until you find someone who knows, even if it's awkward and insulting to the person that thinks you should probably, maybe, turn left.

Stephen Elliot, via his Rumpus emails 

I watched Sophie have a very big seizure yesterday. She was sitting on her bed when it started, as was I. I was reading Eleanor and Park aloud to her, wondering if it was all right to read aloud the words fuck and shit which were sprinkled liberally throughout the first chapter. She's nineteen years old. I skipped over the word retard, flaming off the page. Sophie fell over seizing and I put down the book and said it's ok, Sophie, and then I watched her grimace and jerk, her thin legs and even thinner feet stiff, her toes curled. She made a guttural sound even as I spoke softly and watched her lips turn gray and eyes blink. I looked out the window, at the light falling on the drifting sun mobile that hangs from the silk floss tree. I probably blinked a few times and wondered at my own dissociation even as I dissociated. No one knows what this is like unless they know. When it first started happening, when I asked for direction and got it, I trusted the way. I gave her this drug and that one. I measured sticks of butter and whipped cream with slivers of strawberries, spooned it into her mouth as she paced restlessly around her room, starved. I removed all fragrances and chemicals from the apartment, the direction an Orthodox lady gave us using a pendulum in upstate New York. I removed dairy and added long-chain fatty acids, probiotics before they were called that, walked down paths while being mocked (I know you did, behind my back). I don't remember which year it was when I realized that the person giving directions wasn't sure, but I stopped taking them. If you stop taking directions, you wander. You wander down different paths and up staircases in offices on residential streets. A man with a ridiculous name taps his long fingers together and tells you, Help will not come from a traditional source. It will be natural and near-spiritual in nature. You forget that direction until you remember it. It's a feeling in the pit of yourself, not in an organ. You dissociate from it until you can't any longer, and then you look. You find someone who knows, and that someone is you. It is awkward and insulting to the others when you find the way, but you keep walking it. You give her the oily extract from the plant, a spiritual plant. Sophie only had the one big seizure, and it came after nearly three weeks with none. Go this way, says the sun as it twists in the wind under the silk floss. Keep going this way.

How We Do It: Part XXXVI in a series: Too Many Hands

The moment Sophie was diagnosed with infantile spasms when she was three months old until this moment, nearly nineteen years later, she has been subjected to and participated in any number of therapies. There were the traditional ones: physical, occupational, speech and language, anti-epileptic drugs and tests to figure it all out. There were the alternative and integrative ones: the healers, the osteopaths, the nutritionists and homeopaths, the music and art and augmentative technology and Alexander Technique and Chinese herbs and acupuncture and the laying on of hands. Of those two distinct groups, I will confidently say that the first did nearly nothing, in the end, to stem the tide of seizures and their effects on her development and quality of life. I reminisced yesterday to a friend about the first three years of Sophie's life and then again when we moved to Los Angeles: the endless therapy visits, the sitting in waiting rooms and trudging up and down New York City streets with Sophie in her stroller, then later in a car-seat with two babies, up and down the highways, into the valley and to the west side. No more need be said about the vaccinations that harmed her, the more than twenty drugs that rendered her sleepless, irritable, dizzy and doped, sometimes anorexic and always, always, the seizures kept coming. So many hands. The second group, namely the osteopathy and the Chinese medicine and acupuncture, in certain instances, stopped her seizures (atonic drops with Chinese herbs), but most importantly afforded her more potential and greater comfort. Still, the seizures came, as did puberty (early) and very little else. I doubted what I was doing as much as I knew it was our only option. There were nights when voices and hands spoke all at once in my head, and I lay there, silenced. So many hands. Every three years or so, in the beginning, I was overcome by the all of it -- the all of it -- by what I decided to call too many hands. 

Too many hands.

Effective, ineffective, harmful, good -- it's just too many hands. 

I stopped all of it, then, shut down the voices, picked one or two things, weaned the drugs, refused to add more, laughed with rue, sprouted ounces and gray hairs, tousled with resentment and swallowed grief, wrote and sat and wrote and sat  -- a sort of giving up and giving in, a surrender that keeps hopeful.

I feel a bit of that with Oliver, too, right now. Too many hands.

It's time to stop and think. Listen to my own still, clear voice, above or maybe below those fluttering, well-intended hands.

Seizures, the universe, humor, grace and God

God, Blessing the Seventh Day - William Blake, c. 1805

My last post got many kind comments, some nearly over the top in praise of both my writing and miracle-creating abilities. I'm so thankful for this incredibly supportive community, and while I'll admit to being a kind of comment whore, I am, most decidedly, not a holy person with a direct connection to God and miracles. I'm not sure I even believe in miracles -- other than those tiny moments of grace when despair and worry and trial lift, effortlessly, and leave peace and humor and relief in their wake. I've experienced many such moments of grace and feel it's my duty, in a way, to be open to them, to acknowledge them, to give them attribution, and while I hesitate to use the word God in these over-religious, political (as opposed to spiritual) times, I am deeply grateful to what is, apparently, an abundant universe, where divine love always balances out its opposite.

When I interfered with Sophie's seizure, I was really only practicing the advice given in one of my own bibles, a book called Epilepsy: A New Approach by Adrienne Richard and Joel Ritter, M.D. I bought this book in the late 1990s and believe there's a newer edition, but its subtitle - What Medicine Can Do, What You Can Do For Yourself explains its initial appeal to me when I was just beginning the godforsaken journey of uncontrolled seizures, when Sophie was a bitty baby, drugged out of her mind quite literally, and I began to realize that my daughter's brain was perhaps as dark a space as the heavens, before God made some order, and that it might, perhaps, be up to me to create a bit of light. That book, along with Anthony Weill's Spontaneous Healing wasn't handed over to me like tablets, but rather appeared on a pitiful shelf of books in the Alternative Medicine section of the Barnes and Noble on 86th Street in New York City. Yes, it was a moment of grace, and I'm deeply grateful to Richard, Ritter and Weill for opening my eyes and helping to set me on a path that perhaps afforded more potential to Sophie than were I to follow the traditional one.

Here's the passage:

STARTLE-AND-SHAKE

A team of researchers from the University of Utah Medical School set out to test the possibility of stopping seizures in a population of developmentally delayed schoolchildren. In almost every case, the children had no more seizures.

The method the researchers used was startle-and-shake. It requires the existence of an observable preliminary behavior: staring at a flat surface, raising the arms, a strange tone of voice, hyperactivity, and so on. The support person acts to interrupt the sequence by following these steps:

1. Shout "NO!" loudly and sharply to draw attention outward.
2. Grasp the person by the shoulders and shake him or her once. This changes the body's preseizure mode.
3. Give a little reward, a hug, an excited "You stopped it!" Offer any sort of praise or love for arresting the seizure. Let the good feeling, not candy or whatever, be the reward.

As for Oliver calling me a miracle-maker, it was said with great irony and therefore another moment of grace -- that my children can rise up and up and up and find humor even in the darkest moments is a wonder, something I am so grateful for that I'd venture to say it sustains me.