Don’t Cry For Me

Let me start by saying:  “Don’t cry for me, Argentina”.  Oh, wait.  Wrong movie.

Seriously, people.  Last night’s awful hours pale in comparison to cancer, kidney disease, and progressive diseases such as ALS or MS.  One of the goals of this #journeytojoy remains developing a cheerful attitude in the face of obstacles. 

All my life, doctor after doctor has issued dire predictions about my future.  Bedridden by 25, care facility by 35, dead by mid-40s.  During childhood I believed the warnings.   I threw myself into a party life in my late teens and twenties.  I never lacked for prescriptions to take the edge off pain. I worked full-time from a young age so I could afford a good brand of Scotch to wash down the pills.  I cruised into my mid-30s on the edge of total numbness.

The birth of my son in 1991 should have brought me to my senses.  Another twenty-odd years would see me confronting a stark choice:  Pain or emptiness.  With my particular neurological sensibilities, and the limits of modern pharmacology, no middle-ground could be found despite decades of guided experimentation.  Even here in California, with CBD on every street corner, nobody quite knows what to do with what the venerable old Ted Sandow MD noted:  Abnormal bodies behave abnormally.

Don’t cry for me, Argentina.

Seven years and 5-1/2 months ago, I took my last narcotic.  I threw away an entire bottle, stripping off the label and tossing the pills in the safe-return box for proper disposal.  I took myself by the scruff of my neck and abolished the use of spirits as self-medication.  I issued warnings all around to the circle of friends.  Pain changes everything, I told my then-spouse.  But if I can feel pain, I can feel so much else that I’ve been missing.  

My favorite neurologist back home used to caution that neuro-transmission should be regular and rhythmic but mine falls short on both counts.  The resultant misfiring resembles a dodgy transmission in an old Chevrolet.  Signals run round my system, making muscles twitch and my brain stagger.  But again:  It ain’t fatal, people.  Nothing to see here.  Avert your eyes if the spasming sickens you.  My least favorite question at any medical exam?  “On a scale of 0 to 10, what’s your level of pain right now?”  I roll my eyes.  Here’s my pain scale, lady:  “On a scale of getting run over by a car, flying through the air, hitting his windshield, and having your right leg broken in 32 places to watching your mother die a long, slow painful death of metabolic uterine cancer, I’m somewhere in between.”

So there you have it.  Every six weeks like clockwork, I have a wicked ugly night like this last one.  For a day or so in advance, warning zaps cause my legs to shudder.  We kept a calendar for a couple of years back in the 90s, so I know that six-week label rings true.  Nothing has changed in thirty years.  The cycles perpetuate and persist.  Down, up, peak, down, up.  You could set your Roman calendar by the pattern.

It’s a hard row to hoe and harder for outsiders to watch.  The only romantic partner that has tolerated the experience did so from a wheelchair in complete understanding.  Otherwise, I strive to keep my crabby being to itself in the hardest times and only go around others at the high peaks of my ability.   Between times do get lonely.  When my eyes  opened this morning, I dearly wished someone would bring me a cup of coffee.  But five minutes later, I hoisted myself out of bed, downstairs, and into the kitchen where I stretched while I waited for the kettle to boil.

Don’t cry for me, Argentina; for I still have Tara; tomorrow is another day; and as God is my witness, I’ll never go hungry again.

It’s the eleventh day of the ninetieth month of My Year Without Complaining.  Life continues.

Taken last year from the road on which I live.


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