My Moth-eaten Memory

Memory deficits - almost everyone with TBI has to deal with them - lot of people who haven't have memory problems!  Writing notes, making lists, repetition - we all have ways of dealing with our moth-eaten memories.  But one of the most consistently frustrating things I struggle with is my extraordinary ability to lose things.  Saying I have spent hundreds on replacing things I have lost, misplaced, or left behind is a gross understatement.  The old adage "you'd forget your head if it wasn't screwed on" fits me too a T.  My most recent example of this, is sadly classic.  

Several weeks ago my ear headphones broke.  Oh they still worked  if you held the cord just so, but the connection was definitely on the fritz.  As I value my hearing, I had been considering getting some new over-ear headphones for a while, and this seemed like the perfect opportunity to get myself a new pair.  I went to Circuit City, and looked at the nice shiny Bosse headphones, I agonized over them.  As I have been spending too much on Christmas presents anyway, at last I decided on a significantly less expensive brand of behind-the-neck headphones that I could wear with hats and would go underneath my hair.  For a week I wore them everywhere - I keep my metro card in my ipod case so it is always with me.   Granted they were more cumbersome than the tiny ear buds, and took some situating in my purse, and hurt to have on too long, but I suppose you have to make some sacrifices for your hearing.  Then, one morning opened my computer bag and they were gone.  I looked everywhere - took everything out of my bag, turned my room upside down and rightside up again, searched the apartment - all to no avail.  Another casualty of the memory holes - thank goodness I didn't get the Bosse headphones!

This can be quite frustrating, but I have come to accept it as a part of myself and try my best to keep everything in order, and be careful not to leave things behind.  As the headphone incident, shows, I am far from perfect, but I was reminded of how far I have come last Saturday.  

I went to see a matinee performance Thais at the Met.  I'd never seen it before and was really looking forward to seeing Renee Flemming sing.   I had been given the ticket as a Christmas present, but my friend who gave it to me was in Paris for the week so I went to the opera by myself.

At the first intermission, the woman next to me, a lovely 78-year-old language tutor from Queens, struck up a conversation with me.  She was a long-time Opera aficionado and the longer we talked, the more I liked her - she loved animals, nature, the arts, and seemed to be an extremely kind person.   When she asked me what I did, I told her that I was looking for an agent and publisher for my book, and felt comfortable sharing my story with her.  She shared that she had a cousin living in Germany who had recently suffered a stroke, so she had first-hand experience with brain damage.  A moment later the second act started and we were once again lost in the enchanting music, exciting story, and sumptuous costuming and set design.  

We continued our conversation at the second intermission, I cannot recall the particulars, but for some reason I began explaining Anosognosia, a syndrome common in TBI survivors and stroke victims, in which the patient is unaware of their deficits.  For example, if a patient suffering from anogsonosia, whose left arm is paralyzed is asked to move their paralyzed limb they will claim to be moving the motionless arm.  When asked who the inert arm in their lap belongs to the patient may claim it is the interrogator's, and stick to their claim.  If  asked why their jewelry is on the inert hand they may claim the interrogator has stolen the jewelry or confabulate any story their brain can manufacture to perpetuate the belief that their hand is not paralyzed.  I continued to explain, that anosognosia is not denial, a psychological condition, but a physiological one - the brain simply cannot recognize anything is wrong.   This can be extremely frustrating for both the patient and those around to deal with.

"Wait - what were you saying about the stealing?," the woman broke in.  

"Oh, that was just an example," I replied, uncomprehendingly.  

But she wanted me to explain this concept more throughly.  My explanation had struck a chord - evidently the woman's cousin had started accusing people of stealing from her.  Some things going missing in assisted living facilities is, unfortunately, to be expected.  However, the frequency of these occurrences did not make sense, and she had begun claiming that her family was stealing from her, which had created rifts in the family - her own son had stopped speaking to her because of one such accusation.

"Could this be because of anogsonosia, do you think?"

I didn't need to think about it long, I had the experience.  I told her that it seemed likely to me. I told her that there are varying degrees of anosognosia.  She may know she had a stroke, but not be capable of recognizing the deficits.  If she misplaces something, the simplest solution for her brain to jump to is that someone has stolen from her.  Add to that the fact that her children have had to sell her house, many of her things, and move her into an assisted living home, and of course she is feeling vulnerable, paranoid, and angry.  But it is important to remember it is not the person's fault and not to punish them for it.  The woman thanked me and looked forward to telling her cousin's son and hopefully bringing the family back together.  

I do hope that I have helped their family out, and can help others who've stepped into my old shoes.    I'm pretty sure I wasn't the easiest person in the world to deal with for quite a while after the accident and it was no picnic for me either.  I'd like to try and make things easier for others going through this stuff - for both sides.