Monday, September 03, 2012

The long goodbye to self...

I have tried, many a time, to talk about what it is like to know what I am losing.  In the mental exam, the psychologist was stunned that I had a Ph.D. and that my IQ *was* (for surely it *is* no longer) 151.  This was after talking with her, but before the quiz questions.  You see, with her, she had questions I was to answer and I had no way to prepare, no way to rehearse, no way to cover up all the coping and all the confusion.

One of the quiz questions, as I wrote previously, was the number of weeks in a year.  I tried. I tried really hard to find that answer.  Yet it was elusive.  Panic begins to set in. Panic and horror and despair and fear so great there are no words either to describe it or to contain it.  Another question is a good example of the gaps in my life.  She asked me to tell her anything from the news in the past week.  The news was like a blank slate to me.  Any topic.  Anything I could have answered.  Each day, I read through the stories on,,, and  I had seven days of stories and could not recall a single news story.  Nothing.

Repeating strings of numbers after her was difficult, but repeating them backwards was an impossibility.  Trying to hold the numbers in my mind and reverse them at the same time was too difficult.  At the end, she kept telling me that she was sorry...very sorry.  I honestly believe she meant it. I honestly believe that she understood.  Who I was is gone.  And when I cannot prepare and rehearse and keep control of what is said, what I am left with is covering by nodding my head or murmuring affectations as if I do understand.  Right is a horror because I do know what I should be able to do.  I told her that I wish I were already gone...I wish I no longer knew who I used to be.

I do not know if I am repeating this, but at the end, I couldn't figure out how to leave.  She led me down the hall and turned the corner.  By the time I got to the corner, she had passed through one of the four doors.  I panicked.  I didn't know which door and I was falling into that dark place where my emotions make me even more insensible and fear blinds me.  I asked out loud,  "Which door?"  Several times until I was shouting it loud enough for her to open up the receptionist's office door and point to the door very clearly marked exit.  I saw no sign. I only saw four doors.

This is a great episode on Alzheimer's, on cognitive loss in a brilliant mind.  I have been watching "The West Wing," in part because the president has MS and his disease becomes more pronounced as the years of his terms pass.  I have also been watching it because I know it has some brilliant writing, both in the scripts and in the actual episodes.  Language...words...the craftsmanship of them is almost like an extra character in the series.  I have laughed and wept and had moments of deep thinking, some about my life and some just about government.  For example: hate crime legislation.  Should we really try to criminalize thoughts?  Is murder any worse if it is done out of racial hatred rather than mere hatred?  Is a husband who murders his wife a better person than a racist who murders the object of his derision?  In the end, both are dead.  It was an interesting episode.  Especially since, well, I am not a democrat and the show is written from a democratic perspective.

Anyway, this was an episode with all three.  It has glimpses of things I struggle with in CJ's father...a man who sometimes is lost and sometimes is aware of what he is losing.  There is a great scene in the car, where CJ tries to confront her father on his inability to be alone at this point:

CJ:  [Yelling]  You are holding on to something that— 

Her Father:  [Yelling over her] What am I holding to do?  My conscience identity! Tell me, brilliant woman that you are—

CJ: —can’t be willed way by sheer force of personality, Daddy!

Her Father:  —would you hand over those things without a fight?  I need a little more time, CJ.  If I let it in at its own pace, it will just get dark faster.

There is another scene where he is admitting to CJ's date that he cannot remember things. He holds up a picture of CJ as a child and says, "I  cannot remember who this is." CJ looks on with such sadness and such fear.

I understand.  It is why I took all the photos out of my albums last year and boxed them up.  Too many of them...people I *know* were important to me...people of years rather than in mere passing...are gone to me.  Strangers.  Blank spots in my mind.  Just a few weeks ago, I mailed many of them to my sister and to my niece because they do remember and wanted them.  I really should send them all.  Looking at them only sends me to the dark place.  

The movie "Iron Lady," brilliantly acted by Meryl Streep, is not so much about Margaret Thatcher's life as it was the decline of her mind.  We see who she was in the moments where she is aware of what she is losing...which makes the moments where she is unaware more poignant for us.  In those moments, Meryl Streep so exquisitely portrayed the confusion and the attempts to hide it...if you were looking.

This episode is another great example of cognitive loss in an intelligent mind.  Brief scenes where, if you are looking, you can glimpse the agony from both sides.

The connection made in my mind ties into the information I have been posting about trauma and the brain.  The trauma brings out the instinct to fight, flee, or disassociate.  Cognitive loss does the same.  Being aware of it, finding yourself caught in is like being under constant assault, being attacked without warning.  I think that the insensible insistence on remaining independent is not so much about independence as it is about fighting the attacker or fleeing the loss or finding safety by choosing to disassociate from the battle.

Call me arrogant, but I truly wish I was never smart in the first place.  Were I not, I honestly believe this would be easier.

I am Yours, Lord. Save me!

Sunday, September 02, 2012

I did this...

Forewent the GREEN chair today and just stayed in bed. Given how sweaty and trembly I just got from slapping together an enchilada to put in the oven, that's probably a good idea. I dread the thought of the work of fetching it when it is done.

I have been facing done hard truths about my failures lately, and my visit with Becky smacked me upside the head with another one: I don't know how to have
guests without feeling the obligation to wait on them, cook and clean for them, and go out and about with them as much as they want (even going so far as encouraging them to do the latter). I exhaust myself in the process. And the difference know us that my tolerance for pushing myself has greatly dwindled. So, by Thursday, I fear I was not all that kind and gracious. Foremost in my mind was how physically exhausted I was and how much constant pain I was in from too much standing. By Friday, I was a mess and even more desperate because I was grumpier than I have ever been with the wonder that is my friend Becky.

I simply do not believe anyone would want to visit me, knowing they would need to cook and clean for themselves, do their laundry, and go out without me if outings were frequent. Having seen how hard it was for her to push me at times, I don't believe anyone would really want me going out and about with them. And I don't believe anyone would want to visit me, knowing that I would be napping two or even three times during the day.

Only keeping up the pretense of being the great host really isn't possible anymore. I think anyone other than Becky would have gone running for the hills...maybe even by Wednesday.

It is a very good thing that Amos is okay with a puppy momma who can do little else but sleep, nap, and snooze. I cannot fathom, now that the pressure I put on myself to serve and be the great host is no longer keeping me upright, how long I will be recovering this time...more standing in 5 days than I would normally in probably 5 weeks and not a single nap.

I did this. Me.

I fail at asking for help. I fail at trusting. And I really only have a life in the GREEN chair with Amos. The price for pretending otherwise is becoming more than I can safely pay.

[Note:  I always correct the errors on my blog when they are pointed out to me.  This I first wrote on Facebook and, thus, could not correct them.  The wrong words shame me and they cause my fear to rise.  But I am leaving them in here this one time because I want a record of them, a record of what happens even though I spend several hours composing and editing a short piece. Before, this would have taken me just a few minutes to write...and there would be no errors.  But I am no longer that person.]

I am Yours, Lord.  Save me!