June 27, 2006

• Something Less than Full Disclosure

  …and aren’t you relieved?  Full disclosure would be too tedious
  and exhaustive, as exhausting to read as it would be for me to
  write.  I seem to be on a roll with this theme of only getting
  part of the story told at any given time.  I hope to ride that
  back into a pattern of daily blogging.  My spirit helper surely
  had my best interest in mind when I was instructed to keep a
  journal.  I have been neglecting it lately, and feel that it would
  be in my own best interest to get back into it.  The logical place
  to approach that return is with what’s been going on with me while I
  have been slacking off on the blogging.

  

  I usually say it this way:  “I’m having a rough time, a tough
  time.”  Those are code words that although honest from my end and
  conveying a comprehensible meaning to just about anyone, would mean
  more to someone with the background from which they have come to
  me.  In the Family Rap therapy group run as a community outreach
  project by the abstaining junkies of the Family House residential
  heroin rehab program, those were the words that claimed the floor and
  set the tone for a dump of feelings that usually ended up with not just
  free-flowing tears, but flowing snot and convulsive sobs.

  It is understatement, a thin wedge with which to begin to ramp up to
  describing feelings and/or events that are too extreme, too excessive,
  to jump into all at once.  Compared with things that came out in
  that group of street cops, parole officers, paramedics, fire fighters
  and social workers, my situation is quiet and mild.  I have
  adopted that phrase, “having a rough time,” as a simple way to respond
  to polite queries into my state of being.  Someone asks about how
  my day has been or says, “How are you?” and instead of lying with the
  polite but inaccurate response, “fine,” or “okay,”  I say it is
  rough or tough, unless, of course, I’m having a good, fine, okay day.

  Usually, it is Greyfox asking, because on the rough days I seldom see
  or speak to anyone else besides Doug, and Doug is here with me and
  knows how I’m doing.  He can tell how severe the day’s
  sensorimotor deficts are, by whether I roll out of bed on my own in the
  morning or ask him for help.  This morning was one of the
  worst:  I couldn’t sit up in bed right away when I woke.  I
  made several attempts before asking Doug if he could do something for
  me.

  He asked, “What?”  I said, “Bring me the coffee that’s left in the
  carafe, start a fresh pot, and nuke a muffin?”  He responded, “I
  suppose I could do that,” got up from the couch, and went into the
  kitchen.  While he was in there, I chuckled and he responded with
  a simple, “What?”  I said that it used to be scary when I couldn’t
  move.  I had been lying there remembering fifth grade, when
  sometimes I couldn’t even lift an arm or shift my legs under the
  covers, and how frightening that had been back then.

  Eventually, I learned that with extra effort I could move something,
  maybe roll my head side to side, wiggle my toes, close my fingers into
  a fist.  Then I could ramp up the effort, roll onto my side, get
  an elbow under me and push myself up to a seated position.  That’s
  the way I do it now, and I no longer go through the fear.  Most
  days, I don’t even feel any frustration.  That chuckle expressed
  how I feel about it:  amused and relieved that I’ve transcended
  the fear, and that I now know what I have to do to get moving.

  A week or so ago, I had been thinking about that extra effort I must
  make sometimes, just to shift my body.  I realized that for
  decades I have had to make a greater and greater effort to do what was
  originally an almost effortless task.  Even now, on good days,
  movement is almost unconscious:  I don’t have to think about
  reaching or picking something up, I just do it.  However, I have
  learned some caution and I don’t usually just act without
  thinking.  I gauge my effort and try to avoid the failing grasp
  that causes spills and messes, the over-reach or spasmodic motion that
  sometimes makes me knock or hurl things across the room, or the
  too-rapid rise to my feet that causes orthostatic hypotension and dumps
  me on the floor.

  As I reflected on how much more effort it takes to overcome the
  sensorimotor deficits, I thought, “no wonder I’m so fatigued all the
  time.”  I know that is part of it.  Physically, sometimes a
  given action takes more effort than the same action takes at other
  times.  Mentally, trying to gauge how much effort to give to a
  task at a particular time is wearing.  One gets used to just doing
  things.  Conditioned reflexes that make life easier and more
  efficient for a normal person are dangerous for someone with variable
  sensorimotor deficits.

  Adapting to all that variability isn’t easy.  I know people who have the same disorder
  I have, who haven’t managed to adapt.  I have never encountered a
  doctor, a book, or a website that addressed that adaptation.  I
  count myself fortunate for having been young and adaptable at the onset
  of the disease, and at having the sort of analytical and reflective
  intellect that has allowed me to understand the adaptation and
  communicate about it.  While I’m counting my blessings, I suppose
  I should mention the remissions, the little “vacation” breaks in
  symptoms that I’ve gotten at various times of my life.

  I am currently trying to analyze my remissions in the light of what I
  am learning about brain chemistry.  There’s a pattern.  If I
  can determine whether the remissions of symptoms preceded or followed
  some of the changes in my outer life circumstances, that could have
  significance beyond my own life.  Just as with physical movement,
  coherent thought is more difficult sometimes than at others. 
  Also, just as with the physical “paralysis,” exerting a greater effort
  often overcomes at least some of the deficit.  Right now, I’m
  working very hard at this task.  I’ll try to keep up the task of
  recording my progress, or lack of it, here.

  

  • 4:22 pm
  • 6 Comments