Sleeping Sydney 2-11-19

Well, it ain’t the life of Riley, this hospital living.  For me it’s a bit of a combination between camping and being homeless.  For Nyel is it’s a lot like being in an institution run by the deaf and dumb.  (Forget politically correct.  All that terminology and, especially the HIPPA stuff. does nothing but impede progress we have found.)

So, the/camping/homeless thing is my bailiwick.  I did a lot of camping back in the day when that was our only choice for a vacation.   We could never afford a tent so, when rainstorms caught us in the middle of the night, it was often sleep on the cement floor of the john or curl up in the back seat of our VW bug.  Here at St. Vincent’s my choices, by comparison, are quite luxurious – the primitive (“makes-my hips-hurt-to-look-at-it” according to Pat Thomas) recliner chair, or the extra wide chair with arms or the plain old institutional armless chair.  I’ve made do with each.

I’m the one, also, dealing with “all” my personal possessions – my purse, my toiletries kit, my meds, my laptop, my cell phone (never mind that I have to go to the lobby for service) and my change of clothes.  I’m not concerned that anyone will take this meager collection, but meager is definitely the operable road.  I grabbed what I could think of for the projected three- day stay.  It’s now been seven (for me; ten for Nyel) and anyway, why was it I thought one pair of sox would do??? I should have thought to bring a grocery cart.

Nyel, of course, is given everything he needs – except water which is restricted.  His difficulties are more serious than keeping track of his worldly goods It’s more like trying to hold the hospital staff responsible for his lack of progress.

“Everyone is different” is their mantra, on the one hand.  “Most people respond to…” is their conflicting excuse.  So… they keep him on meds that work for “everyone else” but obviously don’t work for Nyel – the same meds his doctors took him off long ago because (here’s the deaf part) THEY DON’T WORK FOR NYEL

The dumb part is how they make Nyel feel for trying to explain “their” job to them.  Like Nyel hasn’t been paying attention during the fifteen years he’s been dealing with these issues?  So far, not one of the eight doctors who have seen him (about evenly divided between orthopedic and cardiology) have paid attention to what Nyel has told him about his reactions to certain drugs, which regimen has been successful, etc.  They have chosen to “start from the very beginning” and Nyel, consequently, has regressed.

All I can say is… it’s a good thing I learned long ago to sleep wherever I need to and that Nyel is basically a non-violent person.  Otherwise, this “Monday Report” might be coming to you from a different kind of institution – a homeless shelter for me or jail for Nyel.