Wednesday, October 30, 2013

On a Ropinirole: La Selva Oscura

In the middle of the road of my life,
I awoke in the dark wood,
Where the true way was wholly lost...

I have Parkinson's Disease. Five or six years down that slope and nearing 71, sleeping only three-to-four hours a night, as I watch the dawn-light come in each morning there are days now when a bitter, muttered "thanks" for that brief moment of grace is all I can muster.

My diminished life had been ticking along fairly well--shakes under control, a good sense of balance, not much stiffening of joints or loss of faculties--up until two months ago when I began to hallucinate. Seems that the accumulation of anti-Parkinson's drugs, which we elder folk broadly call our "meds," had outstripped the opposing drag of the disease's special symptoms. Too many drugs, in other words.

Suddenly I was running into spider webs everywhere I went... then I was surrounded by sticky threads or bits of webs adrift in the air, dusty and dirty and sticking to me night and day. "Oops," said the doctors, "... back to the drawing board."

The plan that resulted was to wean me slowly off Ropinirole, the med most likely to cause its customer clients--I'd say we're "patsies"--to freak out. (Another fact of Miracle Modern Medicine: doctors can only suspect and theorize that someone actually has Parkinson's, and then experiment accordingly, until the patient is dead, at which time an autopsy of the brain can confirm or deny the disease. Parkinson's or not, a mix of meds that work for one person may not work at all for someone else.) Meanwhile it was up to me to battle the hallucinations, deny their presence, distract my mind with other things, take up yoga, get away, flee to the hills.

But of course they traveled with me ("wherever I go, there they/eye am"), to the supermarket, bookstores, restaurants, outdoor picnics, even
across the U.S. for a quick vacation on the Maine coast; everywhere I could feel the malignant nips of tiny somethings that spit at me miniscule bits of white, and moist streaks that rapidly vanished, seen only by me... but they also gradually evolved to become bursts of static electricity, ten thousand microscopic fireworks striking my face and head. I couldn't hold back the phantasms, the non-existent images. I was under siege! In my own house!

Whatever wasn't really there was still dedicated to pinpricking my cheekbones and eyelids, dust-puffing up my nostrils and into my mouth, bombarding me when I'd try to read or work at the computer, harassing me constantly until I'd be forced to take crazed countermeasures--rigging up metal canes to be lightning rods grounding the non-existent electricity; eating standing up while moving from room to room; using a powerful electric fan to blow the unseen clouds elsewhere; devising a deft and daffy maneuver to roll/pull the sparks from my cranium; showering at 2 a.m., then dashing to the bed, where I'd cower gasping for breath under covers pulled over my head; wearing clean clothes for a few hours only, then stripping them off because "dirtied" by the tiny electric charges.

Sweet Sandra, my valiant love and much better half, was doing two or three loads of wash a day, and most other house chores too, maintaining her long-commute day job but losing much-needed sleep at night, and tending to our grandson Lucas on weekends while driven to grief herself watching me quiver and quake and hide, shedding weight and the last of my good sense... and still she holds me, calms me, tries to distract me when I panic or despair. I suppose there's irony in attempting to discuss rationally one's irrational madness (claimed Hamlet, "I am but mad north-north-west"), but when I speak of the "beast" or the "cloud," she doesn't know whether to laugh or be horrified. (Neither do I.)

If I can't resist the illusions clouding and ruling this blurred mind, should I just give in to maddening madness, gain a respite from the daily barrage of irreality, at least try to stall for more time? If my own sick brain is doing this... why? After weeks spent getting off Ropinirole, all I seem to have accomplished is turn my shakes into frenzied flailing, my joints into hardening glue, my mind to mush and my heart to charcoal.

I can't read, I can't work, I ache and shrink yet more from ducking and cringing and cowering. I'd crawl into bed and stay there if the damned whatever would allow me to rest. Bluesman Bukka White sang it right, back in 1940: "When a man gets trouble in mind, he feel like sleepin' all the time."

Right now, I'm a wreck. A shell of the man I believe I used to be. I look and feel like I've aged six years in two rotten months.

What's ahead? On the cliffs above Portugal's Cabo de Sao Vicente (long supposed to mark Europe's westernmost point, "the End of the World") there's a giant stones-and-pebbles "compass rose" bigger than a baseball diamond, vaguely akin to a large-scale spiritual labyrinth. Imagining the petty one shifting beneath my feet... awaiting results from the real blood and urine tests I submitted, three days ago... where do I go next? New meds? A psychiatric examination? A hopeless malpractice suit? A loony bin?
Will I be garbed in a tin hat with antenna, or a "need help here" hospital gown; or will I have broken free (rather than down), able to get back joyously to a simple wear-'em-for-days t-shirt and jeans?

I'm rambling, but am I rambling closer to the Crossroads or stumbling down an unmarked Dead End?

These questions without answers... The most I can claim for now is, I still know a hawk from a handsaw. (I think.)


Steve Provizer said...

It's hard to know what to say to someone you know but don't know...Please imagine that I am writing words that would bring you some comfort, as that is my intent.

iODyne said...

dear medicatED - I landed here from a Mack Rebennack (something somewhere) and massively enjoyed reading all your 2010 posts. A great blog thanks and I wish I had found it sooner.
Anyone who could title a second Blind Faith LP 'It's A Miracle' must get a laugh out of writing, as you have above "too many drugs", an impossible concept in 1969.
My sincere kind wishes to you and Sandra.

IWitnessEd said...

Thanks for the kind words and similar wishes. You say you read 2010 posts? Well, I've posted maybe another hundred since then. I hope you find a few more also worth a look-see.