Today I got up, washed my face, trimmed my facial hair which was threatening to become beardish, and went with the help of my very close friend (who’s making sure I don’t slip into oblivion all at once) to do three errands; one, to manage some banking issues; two, to print, sign and notarize some legal documents that make sure that if I ever should fall into an irreversible coma, that I’m not kept alive with an electrode dangling into the hospital bucket I’d be put into; and three, to go out and take in some sun and eat something and hopefully not feel awful (even to feel human, even to laugh, and to think, and tell stories, and think of stories I’ve wanted to write for a long time but got too busy fighting loser psychopaths online so wasted precious years of my precious life).
And that’s what I did. Or, I mean, what I intended to do, but then things changed: yesterday I had another emergency in the cycle of this mystery illness.
I was eating a little and drinking some juice at the natural grocery food bar where I buy millions of dollars of combinations of roots, leaves, apples, ginger and lemon to be sipped and swished and swallowed, that along with the flax muffins which are one of the only foods I can tolerate these days. (Well, not quite millions, but you should see the credit card bill – that plus visits to urgent care have a habit of numerical addition to impressive heights.) When, after a bite of my friend’s cauliflower, something in my left head exploded into that strangely translucent infinite space that wobbles my being: POP! It might as well have just gone: POP!!! audibly so that everyone could know that I could no longer walk or guide myself very safely, that the standing nausea had returned with teeth, and that even my thoughts were not forming in my head with any sense of familiarity.
I told my dear friend that I was having strong symptoms. “Strong symptoms” is the term I use for any influx of visitors, and over the next hours, the visitors to my body moved from head to neck, to chest, to what are appropriately, sonorifically called “fasciculations”: shaking, vibrating, earthquakes of the body, the fascia, the under-muscles.
I asked her to drive me to any park where I could be on the grass. She did, I got out, walked with a tin man’s stagger and got on my knees on the turf, my head next to the grass. Memories of grass. A lifetime of grass, turf, earth, humus; the smell of Pennsylvania, the state where my father left us; the smell of the soil in our garden, my garden with Helen, the smell of the wet muddy earth of Denmark, where I was once upon a misspent romantic moment a million billion years ago; the smell of the mountain pine forests in New Milford, bordering New York State, where I was sequestered for lost months in summers, where I was far too young to be away from home…the granite of the high desert on the way to Nevada, the sooty sand of the Sierra Nevadas, the mountains ringing San Bernardino, rising to a mile but never achieving anything but heartbreak; sand, soil, earth, the smell of the layer of life and death that births everything that makes us, and into which our bodies or our ashes are buried and scattered.
We drove back to my rented room and I collapsed, my chest tightening, and the lightning in my body, into any position I could hold to interrupt the wobble and the hard breathing. I ended up on my stomach, pushing myself up and down with my breath, and for some reason, it offered some relief. The hour went into two, and she, exhausted from the stress of worry, and me, in and out of a place I recognize as “consciousness,” but not entering sleep…just a holding pattern, moving slowly out of emergency.
Within a few hours, I was able to take a walk. We found a the playground a block away and sat on the swings, and saw the stars that shone through the suburban light pollution. Red Mars and golden Saturn were strong in the sky. We didn’t talk much, only words of consolation: apologies for the stress, apologies for the sickness, and words of loving support and thanks. Walking back, I felt the wobble return, I took the herbal sedatives in their pills and tinctures, and looked at the prescription muscle relaxer. I should take it to make myself sleep, but my head already wobbling and fighting nausea, I didn’t want to add more (which is what the relaxer does), so sleep didn’t quite arrive in fulness, and was fitful.
Morning arrived and the plans for the productive day of planning for emergencies were scattered like clean plastic straws dropped on a sticky, filthy restaurant kitchen floor…no longer ready or safe to be used; and plans change.
Today then is comprised of taking the muscle relaxer, not inflaming my nervous system by anything, not having an attack, and fielding calls from the local clinic that doesn’t require me to be insured, and being among the bustling millions who need help but don’t have the $350 – $700 a month to pay for the “just in case” plans (called “insurance”) that we’re supposed to have, according to the managers of petro-insanity that is ‘Murka in 2016.
Insurance being something I’ve never needed, or not in 14 years, and not for the 14 before, or before… I’ve so rarely needed a doctor in my entire teenaged and adult life – and in youth, my only need was for sore throats and earaches – it made no sense to waste money I didn’t have paying for a system that I would most likely never use, even if I needed to. (And even if I needed to, I’d squirm and fuss and find my way to the least toxic version of their madness and get out of it as soon as I could.)
But now, with a neurological crisis of very serious and urgent proportions, I must fall on any sword I can, and get in line, and ask for the motor-nerve tests that may demonstrate what may be wrong with me, how it may progress, and what $10,000 dollar a bottle (oh yes, that’s what the fuckers charge, hence the want of insurance) might be useful for my hard-to-pin-down condition.
On the condition itself: life creates a template for how we will get sick. My diet has generally protected me against heart disease, and perhaps cancer. But my life, and perhaps aspects of my diet have primed me for a set of illnesses that I never considered as “illness”: those of the neurological system. The nerves. Given time and good enough days, I’ll write more about the topic, and I’m sure readers will be interested to weigh the likelihood that too much veganism might be a minor culprit in this drama – I hope to have something interesting and well considered to tell you soon. (I’m currently waiting for blood tests that may give some levels of important elements.)
That said, my sickness was earned from the collected wounds of a lifetime; diet alone, unless it is truly achingly excessive or deficient, doesn’t cause illness, or doesn’t cause illness quickly; it is more that our dispositions, our woundedness, our philosophical and emotional outlooks, and most of all, our traumas, added to our nature, create the places where the deepest weakness, the cracks in the bedrock, will be most vulnerable to exposure to the elements. (Then I think I can safely say that the brutal three months of dentistry that preceded this illness was the tidal wave, the earthquake, that released or exposed the existing cracks in my bedrock – in my nervous system. But more on that, as time allows, as plans allow.)
But, back to plans.
I’ve wanted to write stories that I haven’t told you before. Stories of New York, of the couple who approached out of the cold, exiles of New Orleans, begging in the snow. Stories of the politics of writing, the amusements of our world, the boundaries and limits of public writing; the allowable sins and excesses of journalism; the ever presence of food in our lives, how it carves meaning into the depths of our cells and binds memory to moments better than any other thing in existence.
Plans change, and I’ll hope for pauses, and stability, even as I have to plan for emergency and loss of function.
We’ll see, I suppose is the question. We’ll see. On verra. Ya veremos.
In the emergencies, dreams rise and become dominant. The worries of the world seem like trifles; the world that I’ve known slips into shadow; problems for other people, for the living, for the fit and active. And in those spaces, in those darker places, there is dreaming.
It can only make one wonder – is the other side a dream? Is it like dreaming? Or, is the slippery passage between worlds coated with the lubrication of dreams?
Pain and infirmity, loss and change. There are always surfaces in any experience; and also depths that cannot be perceived. Everything that has a front has a back, someone once told me.
Print the important documents. Get them to the right people. Get to the clinic and get in line for coverage, so the testing can continue. Get blood test results.
Rest. Eat something. Hug friends. Cry. Smile. Laugh on occasion. And write about it when I can.
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