Cure CJD

Heather Larson's experiences in helping find the cure for CJD

What a difference five years makes in the emotions of this

Yesterday, November 2, marked five years to the day I was told my mother wasn’t going to be coming home.  Her neurologist took us into the most remote corner of the floor where my dad and I sat next to each other as we were told she wouldn’t be coming home.  We were hysterical–or at least I was–so we left after that.  It was around 5 pm on election day, 2004.  We had meant to go back into her room to see her again before we left for the night, but since I was such a mess, we walked past her room in a rush, hoping she would never notice how upset we were.

I think she did though.  The nurse told us the next morning that she had had nightmares and hallucinations about snakes crawling on her legs.  (She had always feared snakes).  It was her last communication that made any sense to anyone.  She sank into herself after that night and never came back, save for horrific screams the night she arrived at hospice and a final laugh two days before she died.  She had laughed at her brother’s joke.  Now he is dead too, having passed on last year.  Yes, from the same disease.

I have always known that she saw us upset when it wasn’t our intention for her to see it.  She had seen us walk past her room in our horrible state that day.  And she knew.  I do believe she knew she was dying before we did.  But that day, she knew that we finally knew.  So she withdrew as only a CJD patient can.  It’s like they fall into quicksand, but the quicksand is their own body.

I am telling you this because I can.  Today, I can.  Thoughts of this on November 2 for the last four years have burned me from the inside out.  But at five years now, I can share it.  I was actually surprised yesterday at how little pain I felt.  I just remembered the day.  I was fully conscious of what day it was in my life and what it meant.  But I didn’t feel like crawling into a hole.  My life is still forever changed from the events of October and November of 2004.  You don’t get to go back.  You don’t even get to visit the way it was.  Once you get over this fact, the feeling of loss diminishes.

Some of us grieve again each time we try to bring our memories of our past back to life.  We remember, then we snap back to the present, which is all we really have.  For me, I was like that.  Once I let the past go–and that took some time–the weight lifted.  But I also delved directly into my pain and got through it.  I believe you suffer longer if you bury your pain or ignore it.

My mother is still here, alive in our memories.  But I no longer miss the past where she was alive.  Instead, I remember her fondly as though she were only on a vacation.  She’s still a part of this life of ours, always affecting my father, my stepmother, and I.

“Only love can leave such a mark.”  –U2


November 3, 2009 - Posted by | Uncategorized | , , , ,

1 Comment »

  1. Pre 1968, vets in Australia used a treatment which was successfull in treating PEM – Polioencephalomalacia – a neurological illness in livestock – which has similar symptoms to CJD in humans.

    I wonder if doctors know about this treatment, which is also for human use.

    Comment by ainee | November 9, 2009

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