Shrine

I am sitting in my girlhood bedroom at my mother's house in Michigan as I write this.  She kept every thing I ever made her and this house and room are like a shrine to me.  She handed me a file with every letter I ever sent her and my dad, and his writing on the manila folder simply reads "Cathy".  Letters in my old handwriting were saved, and I am overwhelmed at how much hope lives in this room.  Hope for a terrific, energetic life full of promise and contribution.  That girl was me.  I was headed to the stars.

My mom said today how blessed and lucky she said her life has been.  I then asked her if she thought I had had an unlucky life, and she said she answered yes.  She has said before that she was the old one, she was the one who was supposed to get Parkinsons and not me. I said, "it is what it is, Mom."

As I sit here, I am nearly writhing, dyskenetic because my brain isnt processing my medications properly today, and especially when I am tired.  Tonight, we went to a fund-raising auction for a local restauranteur who is fighting some type of cancer, and the good will in this small town was evident everywhere.  Cancer makes people want to fight with you, it makes you its victim and everyone is sympathetic.  Parkinson's Disease makes you look slow and stupid and people treat you differently especially when the  motor symptoms are apparent.  I felt foolish tonight when my dyskinesia started and I couldn't control them. Like a person with cerbral palsy,  I felt  trapped in a body that makes people look at me funny.   I talk funny and I can't stop it.  My mother is watching me, I know, and talking about me, I know, to her friends.  I hate this more than anything else; the way people watch me and wonder or even feel sorry for me.  There was an awkward moment last night when Mom said something snippy about my ex marriage, and several awkward moments tonight when a classmate asked about my children, then my husband.  My mom just watched me as I said, "I don't have a husband...but my EX husband is doing fine, thanks."  My friend then attempted an even more awkward "Well, you are still pretty, you will find a nice man," and I replied, "I'm not too worried about it."

I hugged her and whispered, "But I'm not going to talk about this in front of my mom," and then we said our goodbyes.  As we walked away, my head bobbing in full dyskenetic glory, my mom asked me if this high school classmate knew I had Parkinson's. 

Of course she did.  And this classmate also at one point knew I had been divorced.  But we all lead busy lives, people forget things, and awkward moments will happen in front of our parents.  My mother cannot see me as other than her daughter, even as I see myself as a 55 year old woman with my own life and my own secrets and my own dreams.  But she can see me as a person with Parkinson's because I can't hide it any more.  It will have its way with me.  Yet, so few people can identify with me because I'm "too young" to have this disease, and because, unlike with cancers, there is no cure, and my motor skills can fluctuate wildly.  I wonder if someone were to hold a fundraiser for me to help pay for my medical bills, if anyone in Seattle would even show up.  Tonight's fundraiser was standing room only. 

I do not feel as though I am unlucky, just that I have been dealt a different hand of cards than most have to face.  How can I feel regret over a past when I...we all..do the best we can with what we have at that moment?  It is called "one day at a time" and it is all we can do.

That girl in the folder, her handwriting neat and legible, that young woman in the photos,  the clothes she made for her mother, all enshrined in the "pink bedroom";  her hope and future plans don't have to stop. There may be a hurdle or two, but this is not enough to deter the woman that girl became.  I may have to dig a bit deeper, but I have the shovel and am strong enough to use it.

Cat